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The difference between a helping hand and an outstretched palm is a twist of the wrist.
~Laurence Leamer, King of the Night
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So it all started when I wrote THIS. Which, if you’re interested, was part one of THIS.
And you all spoke up. And asked how you could help. And while I hadn’t realized that the post had read as a cry for help, once I read your comments, I went back and re-read my post and I then I couldn’t really deny that I obviously needed help, which I wrote about HERE.
And then, because you are all sorts of brilliant, you came up with the idea of creating a place to help one another — A place where those with questions could ask them and those with wisdom could share it.
And then, because I am just smart enough to recognize a really good idea, I said, “Um, that’s a really good idea.”
So here’s how this works, my friends — If you have a question, you leave it for other readers in the comments. If you have ideas or suggestions that can help, you leave them in a comment replying directly to the person asking the question.
I will not be officially moderating the comments on this page, so …
PLEASE NOTE THAT THE COMMENTS ON THIS PAGE ARE NOT NECESSARILY REFLECTIVE OF MY VIEWS, AND ARE NEVER, EVER TO BE TAKEN AS GOSPEL. INSTEAD, THE THOUGHTS THAT YOU FIND HERE ARE INTENDED TO PROVIDE A STARTING POINT.
ALL OF US ARE DIFFERENT. ALL PEOPLE WITH AUTISM ARE DIFFERENT. NO TWO PEOPLE WILL RESPOND THE SAME WAY TO THE SAME THERAPY, TREATMENT, MEDICATION, ENVIRONMENT, INTERVENTION OR STRATEGY.
I URGE YOU TO THOROUGHLY RESEARCH ANYTHING YOU READ ABOUT HERE AND TO CONSULT WITH PROFESSIONALS TO DETERMINE APPROPRIATENESS BEFORE BEGINNING ANYTHING NEW.
Now, just because I won’t necessarily be a part of the conversation here, my absence does NOT mean that Diary’s Comment Policy will not be in effect on this page. It will be, just as it is everywhere else on the blog. It reads as follows.
My greatest hope is that the discourse on this blog and its accompanying Facebook page can serve as examples of environments in which compassion, understanding and mutual respect are paramount.
That said, I publish nearly all comments, but there are rare exceptions.
I have long been frustrated and deeply saddened by the chasms in the autism community. I will not allow diary’s comment section to become a megaphone for the anger that serves to keep us divided.
I will not abide personal attacks, either on me or my readers. While I actively welcome constructive disagreement and respectful discourse, this is not a forum for unproductive anger, particularly that which is directed at one another.
While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.
From the bottom of my heart, I thank you – not just for sharing in our family’s journey, but for joining the conversation. And in so doing, respecting each other, supporting one another, and finding ways to bridge the space between us.
BOTTOM LINE, THE COMMUNITY SUPPORT PAGE IS A JUDGEMENT-FREE ZONE. IF YOU DISAGREE, PLEASE DO SO CIVILLY AND REMEMBER THAT WE ALL HAVE DIFFERENT PATHS AND DIFFERENT PERSPECTIVES. FEEL FREE TO OFFER YOURS WITH RESPECT AND COURTESY FOR OTHERS.
Lastly, I reserve the right to remove any and all comments that do not comply with the policy above or for any other reason at any time.
Thank you so much for supporting each another. It’s everything.
Ed Note: It seems that WordPress limits the number of replies to a comment. If you find yourself unable to reply directly to someone’s question, please reply instead to the last person who replied to the same question. That way your response will still show up in that thread. Thank you!
a diary of a mom 
BRAVO!
Love you,
Mom
Perfect, incredible, resourceful!!
Happy to see this 🙂
Eva
My son had a tramatic experience at school. His psych is considering using EMDR. Has anyone ever used it?
Yes. I have done EMDR. I had a wonderful therapist who specializes in EMDR. It was probably the single best thing I’ve done for myself. If done correctly it will transform the trauma from something that pulls you down into the hell of reliving it whenever it is remembered, to just being a story that you know is part of your past, but will not necessarily pull you down into the horrors of it every time you think about it. It’s almost like having a scrim unfurled between you and the traumatic experience.
Thank you so much!
Awesome 🙂
this sounds like it will be a great resource to all of us with this in commen. thank you so much.
This is awesome. ❤
Perfect. Thank you.
OK so this is supposed to be where we can help each other, right? I’ll just put it out there then. I have a son on the severe end of the spectrum who is a sensory seeker. I need to put a behavioral plan in place for home but am at a loss as to where to start. I have tried professional after professional and they have turned us away, saying he is “too violent” for their programs. Funny, he isn’t too violent to live at home… and the violence isn’t intentional on his part, he just needs to find a better way to express things. At this point hospitalization has been mentioned. We are on waiting lists we have been on for months for specialists, but those lists don’t help me work on things TODAY and it’s rough. Does anyone know of a good how-to website or book for behavioral plans? I am on my own here, floundering, trying to do the right thing by my child… any information would be helpful. Thanks.
Perhaps you can look at the following books – if you look at them on Amazon, you can look inside them, I just have these links because that is where I bought them
http://www.bookdepository.co.uk/book/9781934575444/Outsmarting-Explosive-Behavior
http://www.bookdepository.co.uk/book/9781931282314/A-5-Could-Make-Me-Lose-Control!-an-Activity-based-Method-for-Evaluating-and-Supporting-Highly-Anxious-Students
http://www.bookdepository.co.uk/book/9781931282352/A-5-is-Against-the-Law!
http://www.bookdepository.co.uk/book/9781931282871/The-Way-to-A
Kim, I’m so sorry you’re having such a hard time finding support for your son locally. 😦 If you can answer a couple questions we might be able to help find some good resources.
How old is your son? What types of behaviors are you you most concerned about? Is he ablet o speak? If he is not, does he have any kind of communication system in place (sign language, picture exchange, pointing, speech generating device)? So many children have SIBs (self injurious behaviors) either from pain or frustration at not being understood (or a combination of those things). A behavior plan will only go so far to help if your son doesn’t have a way of making himself understood.
Is he in school? Is he in an early intervention program (if he’s 3 or younger)?
All that being said, a basic behavior plan involves identifying the things which cause your child to escalate his behaviors and then “trouble-shooting” in advance. For example, if he has trouble transitioning from one activity to another, you could try giving him a 2-minute (or whatever time works) warning and tell him that when the time is up, you will move on to (name of activity). Also, picture schedules or lists (if he can read) really help lots of kids feel some control by knowing what to expect next.
If you google “create a behavior plan” you can find lots of resources which may be helpful. Ter Mauro wrote an article about BH’s here: http://specialchildren.about.com/od/specialeducation/qt/behaviorplan.htm
I hope any of this helps. Best wishes!
If you want to email instead of answering here, you can reach me at niksmother (at) gmail (dot) com.
Wow, sorting through all of this… this is great, by the way, a place to give and take from! Ok so to answer your questions, my son is 6 years old and he is in an Autism program at school. The school hasn’t helped me any either… not sure if I mentioned that. They would like me to do things “exactly like we do it at school”, HOWEVER when I visit I see things like them allowing him to crawl on the floor and bark or things going on with other kids I don’t think is supposed to be going on, things they don’t tell me about. His school behavioral plan has him doing puzzles or hooking up connecting toys, which is all they tell me, however that isn’t the truth either. One time when I went they brought him up from the ‘quiet room’ where they said he was ‘readjusting’… no further explanation. He is in Kindergarten… well he was… last day was today… and has been in Autism programming for 3 years now.
As far as communication, we do some PECs, he isn’t very verbal. But the school requested I do nothing further because they said if I do it would go against what they have working at school. I was going to get him an ipad and they said if I do he will have no incentives to TALK for what he wants and so he might never be fully verbal. I also feel I need an Advocate, but the only one I have found was through our area education agency and she gave me some phone numbers and basically said have a great day. I have called every help organization in my area, and what it comes to is it’s all me. I made an appt. in Iowa City at behavioral health but that won’t be until November, they are really backed up, and it’s a two hour drive every trip up there, so I would like to make that trip as little as possible. A normal car trip involves my being punched in the back of the head, kicked in the back (he broke my seat), screaming… you name it he does it, no matter what toys or games I supply him with.
Hi Kim-
I was reading what your school said about PECS possibly removing your son’s incentive to talk. There is a lot of evidence to the contrary. My daughter is moderately deaf, autistic, nonverbal. We are using sign language and PECS with her. If and when she is ready to speak, she will,but until then, at least she has another avenue of communicating with us. I would question your son’s team more closely on why they feel PECS would interfere with speech, when there is a lot of evidence to show that it (like ASL) helps develop language in children, and in that way may actually encourage speech. Also, there is a book called The Out of Sync Child that may also help with many of the sensory issues. My suggestion would be to find a speech language pathologist who specializes in PECS. This doesn’t have to be an autism specialist. They could at least get you started. Perhaps some of the frustration would be eliminated if he had another way of communicating. I am so sorry that you are going through all of this. Feel free to email me if you need anything.
I’m trying to reply to Kim…. but it won’t let me! Kim… my son will be 6 this fall. We also just finally got an appt down at U of I Child Health Specialty clinics… took nearly a year. We go in late June. I’m running into some of the very same AEA/school issues you have mentioned and we really have to fight for anything and everything and in the end wind up doing it all ourselves. I feel for you and am right there with you. I will say this… PECS and the iPad were miracles for my son. He was never non-verbal, but now he is so much better able to express himself than he was before and he is using his words a lot more and just screaming at the top of his lungs a lot less. The iPad also is a savior for us on car trips… I guess I have no real advice other than do not totally discount PECS or iPad… and know you are absolutely NOT alone in this struggle.
oh, and I wanted to add, my son is also a sensory seeker with aggressive tendencies especially at school. OT was another godsend for us. Difficult, time consuming, and absolutely necessary. We also saw some progress with a system called Integrated Listening Systems, which they did at our OT appts when all of the other therapeutic listening things failed. These headphones vibrate and he really liked that input I think. The book the other poster mentioned The Out of Sync Child was really good and helpful too. There was something else but I can’t think of it right now…. will try to remember it. Also, I don’t know which direction you are from Iowa City but there are some awesome autism clinic resources in Dubuque at Mercy hospital there (we can’t get over there, but everyone I’ve met who went there had only good things to say). Of course U of I is supposed to be top notch as well (guess we’ll find out in June…)
Anytime a “professional” tells you that their way is the only way and that you should not try other approaches, this is a BIG, GIANT, RED FLAG. Ideally, you could confront them and remind them that this is your child, and they are only there to help you. YOU are in charge. It is an unfortunate reality that there are certain “professionals” who use their status to bully people. In this case, they use your concern and confusion over your child to try and take control of things that should not be controlled by them.
The appropriate attitude for a provider in this situation is one of collaborative effort. Good providers are overjoyed to find parents who are concerned and active in the care of their kids, because there are parents who are uninvolved the neglectful that they see all the time.
Now, I could be reading the situation wrong, but it sounds to me like they are using scare tactics to keep you from using other methods and other tools other than the ones they provide. This is completely inappropriate. It sounds like you really do need an advocate to help you. I wish I lived near. I would be happy to help, but this is a really hard one. The only thing I can offer at a distance is my support and a listening ear.
Feel free to contact me at scintor@aol.com or I can give you my phone number if you would rather talk over the phone. You were dealing with a very difficult situation and it never helps when you find you’re being bullied.
John Mark McDonald
Chadd.org will help you
I know that I’m really past the activity on this thread, but, I am wondering how things are for you and your son. What changes have you all made and which have ‘worked’?
I am asking because the reply thread includes some very helpful information, and there is more, as you know!
Please give an update, if you are still following this site! My son has violent outbursts at home, school, wherever, and I have come across some very helpful techniques in the last year, but would like to also know what has worked for you and others!
For us, utilizing Dr. Ross Greene’s model found in his book “The Explosive Child” has been extremely helpful. This model is well-described in his website: http://www.livesinthebalance.org/ where there are links to a weekly call-in online radio show for both parents and educators.
I hope all is well and look forward to a reply!
Thank you.
Thank you Jess. I woke up this morning thinking to myself…I could really use that community support page right about now…and here it was.
I NEED HELP…or at the very least some support Please…
My daughter is 4 and a half. She was doing amazing and making tons of progress up until a couple of months ago. She started making requests, was potty trained, communicating in her way, happy, and regulated.
Now…NOW…she is so bad. She is screaming at every little thing. ALL day. Screaming, crying. The behavior is off the charts. She’s also having more accidents, when she was doing really well. She is screaming in private therapy. We are loosing it over here.
We’ve racked our brains trying to figure out what’s wrong…allergies? 5 YO molars coming in? Both? Is something going on at school? Is she eating something she shouldn’t be? (she’s gf/cf)
ARe we doing enough? Are we doing too much?
I’m setting her up with therapeutic horse back riding. She went last year and it really helping. I’m hoping and praying my insurance company will cover some ABA therapy….working on that now.
I just can’t take much more of this. My heart is breaking. I can’t sleep. My marriage is stressed (though we talk a lot) and I’m crying pretty much every day.
What can we do?? What am i missing? Has anyone else had something like this happen? ANY idea at all what might be causing it, or what I can do to help?
It’s KILLING me to see her like this…and I’m desperate for some answers. Thank you all.Barb
Hi Barb. I’m sorry things are so hard right now. I totally get this. Sometimes it seems like these behavior changes come out of nowhere for my son too and I play detective to figure it out. Then three days later, it comes clear (sick, school anxiety, etc.) Best advice I ever got was to try to track everything, from hours slept to toileting changes to food. And ask if there’s something new happening at school. I know my 6 yr old has been anxiety-riddled over the end of the years school play and the constant talk of first grade.
If Jess is okay with this, I’m also linking to a post written by a friend of mine called “It isn’t Regression”. http://www.spdbloggernetwork.com/2012/04/26/it-isnt-regression-2/ This time of year is really hard for our kids sometimes, and we may have to give them a little more space to breathe to help them through.
Good luck. You sound like an awesome mom and your daughter is lucky to have you.
Thank you
That blog was AWESOME!! And I think that it’s helped me. And it’s right…this is a tough time of year for her. This was also her first full year of school. There could be so much going on she is just too stressed. Thank you so much for that.
My 6 yr old daughter (who is not autistic) has gone through SO many phases of emotional stresses in her life, that I often wonder if there IS more to it all (we’re in therapy with her for some issues currently). My point being, that even without the challenge of autism, girls can be tough! Have you considered problems with her ears at all? I know it sounds crazy, but we have had so many issues with my 2 yr old’s (he is PDD NOS) ears over his life so far, and it has caused him a lot of pain (we’re off to the ENT today to have his tubes checked). When he was an infant, he would scream for no reason and we had no idea why…at 6 mos old, we found out he had a dandelion seed stuck in his ear…had floated in there in the fall! He had to go through surgery to have it removed, it was so far lodged into his ear canal/on his ear drum. While this may not be helpful, it’s something you might want to consider…I know ear pain has caused him some pretty extreme discomfort and made him inconsolable at times. Hang in there and I hope you find some solutions!
It could be something like that going on. I’m planning to take her to the doctor, dentist…to get her checked. It could just be end of the year stress…it could be something more. Thank you so much for your support, it means a lot
Hi Barb! My son had a few potty accidents after a year of being potty trained and we discovered it was from anxiety and that he was being picked on by kids in preschool. They are all the same age but he’s little for his age and wasn’t speaking up for himself if they took a toy or something. After we brought up the problem the teachers and bus driver started watching for it and moved the kid to another area that was being mean to him. Try asking the teacher or anybody who would know because maybe that is happening but it’s not being caught.
Thanks, i will
As an Adult with Autism who is raising two autistic kids, I can sympathize. Since I am not there, I can only guess, but it really sounds like sensory issues. From my own experience, autistics tend to need a small amount of sensory stimulation of the right type and shielding from stimulation of the wrong type or overwhelming amounts of any type. Unfortunately, what kind of sensory stimulation is bad and what is good is different for each autistic person.
Because she is still little, the only way to figure this out is by observation. If she screams every time it gets quiet, it may be that she needs sound stimulation. Some low background music like classical or ambient could make a great deal of difference. On the other hand, if she screams every time there is a noise, this could mean she’s being overwhelmed by sound. A pair of headphones that completely cover the ears could be an amazing help to her.
If she likes to hide in dark places, or seems reluctant to go out into the sunlight, she may have light sensitivity. A pair of sunglasses, even indoors, can be a real help. If she is drawn to the light and things that are brightly colored, she made need more visual stimulation. Shimmering and iridescent things could be very comforting to her.
She’s constantly rubbing herself she may need more tactile stimulation. A stim brush such as occupational therapist use could be very helpful. On the other hand, it is not uncommon to be overwhelmed by things like clothing touching her skin. Warning signs here are things like constantly taking off her clothes or rejecting rough blankets or towels. In this case removing clothing tags and making sure the inside lining of the clothing is smooth and not scratchy can be very important. Another thing to watch out for here is sensitive skin. If she is constantly scratching at her skin until it’s red and raw, she may be sensitive to things like the chemicals in fabric softeners or the scents in laundry soaps.
Smell can also be the big sensory trigger. If she is constantly burying her nose and things she may be smelling them. In this case scented candles or Glade plugs might be useful. Conversely, she may be overwhelmed by smell. If she avoids the kitchen or rooms that have just been cleaned or any other strong smells, scents may be overwhelming to her. In this case Frabreeze becomes your friend.
In any case, sensory triggers tend to be a big deal for autistics of any age. Being overwhelmed by their senses makes all the other tasks in their life much more difficult. This can lead to her being unable to deal with things that she previously mastered. I really hope that this can be of use to you or others.
John Mark McDonald
http://cleoland.com/ Please view and leave comments at my newly created page, I could use the support. Thank you.
totally get what your saying. I am so sorry your dealing with this. It is hard when we can’t seem to figure it out. We have been through times like this with Sammy too. What we found it was for us was often a developmental leap about to happen. It gets sooo bad before he gains a new skill I just want to run away…or drink heavily
we do find that trying to isolate the skill and working on it can help. being really careful about sleep and water/hydration because those are huge triggers for my guy. Anything with Dyes, artificial flavor, or BHT make him CRAZY! I hope it’s better for you by now
Cheers;
Annemarie
What a wonderful idea!!! I’ve been trying to link up to some sort of support group (mostly under NEARC) but have had little luck, and not very much time to meet up face-to-face. While my concerns are not as trying ast those mentioned above…I do need help…
One thing–any ideas how to stop a child from chewing on their shirt? My 2-yr old son is ENDLESSLY CHEWING the collar of all his shirts (or the wrist area)…looking for ideas on how to stop this as we’re running out of shirts and he’s walking around with wet/smelly shirts all day. I’ve tried the vibrating teethers, but he’s chewed through them and they’re not ideal to carry around the house.
Valmae, have you tried behavioural type rewarding ie in the most simplistic terms – say, yay, you didn’t chew for 1 minute, have 5 minutes on a rewarding activity, then once the 1 minute is happening successfully, update it to 2 minutes – yay, you haven’t chewed for 2 minutes, have 5 minutes on the reward until you can get the time up – I know that sounds simplistic but you might have to start at a really short time interval and/big reward and gradually increase the demand/reduce the reward or maintain the reaward – you don’t need to keep increasing the reward if it is done slowly.
Am def going to give this a try, as I feel he finally understands. He has his favorite toys now, so I can certainly use those as “reward”. thanks!
At 2 yrs old, many children are still exploring their world through ALL of their senses. If the behavior is constant, you could try either a behavioral approach (not always successful with kids that young as they don’t have as much control over some impulses) or you could find something more suitable such as a chewy tube or “chewelry.” Both of them can be found online at various sites for various costs. Here are some links: http://www.mayer-johnson.com/nsearch/?keywords=chewelry&s_kwcid=TC|16135|chewelry||S|p|11413471264&gclid=CJ7utpjwk7ACFUdN4AodXkbMpg
and http://chewytubes.com/ The chewy tubes come in different thicknesses and textures, even letter shapes.
Also, I find that my son is less likely to chew when he is fully engaged in another activity. The chewing usually ramps up more with boredom, anxiety, or (when he was younger) teething. (Is your son getting his 2 yr molars?) Hope this helps!
Thanks so much for the links, I will have to check it out. I had made one myself, by braiding together teeshirt fabric, but that got pretty gross, pretty fast! I do feel he chews ALL the time, but it is certainly less when he is engrossed in an activity. Going to check out those links now, thanks!
I also turned up the heat in the house and took his shirt off him. He had to “deal” without the use of chewing on his shirt. He gets LOTS of therapy and I tried to up his stimulation on other things b/c his shirt chewing was mostly from computer stimulation. After a while it phased out and now we only see this on a hard day. I REALLY liked Wattle’s advice as well. A lot of autistic kids work well on the “first – then” way of thinking. First you don’t chew on your shirt for “x” minutes THEN you get a treat . Make sure it is a treat he really wants and GOOD LUCK 🙂 ps a good behaviorist has been a serious plus in our lives.
Thanks, this is on my list for the summer…no shirt…no pants 🙂 Hoping to start potty training…or at least awareness of the potty (he seems to have NONE) given that he will be 3 at the end of August. He is starting pre-k this fall to continue getting services that he outgrows through EI & Building Bocks, so I feel I need to nip this chewing in the bud…or at least provide some alternative. Thank you!
We also went through this phase when my son was 4. His OT bought him some really cool foam-like teethers (but stronger than foam, so he could really bite down hard on them but they didn’t fall apart in his mouth), and they were easy to carry around with him. The key was that we would give him the teether RIGHT when we saw him start to chew on his shirt, so eventually he started just going for the teether instead of the shirt. And, one day, out of nowhere when he had been obsessed with it the day before, he just stopped doing it — so maybe that will be your solution.
Thank you for the input…very good idea. I just have to have the patience/time to intervene when it happens. We did try the vibrating teethers and it worked for a bit…but he really did chew those up fast. We’ll give it another try!
As a 42-year-old autistic adult, I remember doing that very thing as a child. It sounds like a form of sensory stimulation to me. It might even be useful to try and use behavior rather than curb it. Beef jerky, chewing gum or other chewy foods can be used as rewards to help shape his behavior. I remember being given a rawhide dog chew toy as a child because I was doing this very thing. I took it as a challenge and chewed the thing completely to pieces within a day or two.
John Mark McDonald
Sounds kinda crazy… but get his zinc levels checked..
Yay!
This is terrific! Thank you!
This is great! Thank you!!
This is awesome! Our 3 year old son was diagnosed with high functioning autism. The whole process of getting the appropriate services him is really quite daunting! However, that’s not my question. We are having a really really hard time potty training him. We have tried the 3 day method twice. The second time we thought he had it but when he went to daycare, he did not have the same success as at home and he basically reverted back to having accidents all day. Plus, he would yell “NO! NO! NO!” when his teacher told him or asked him to go to the potty. They definitely did not force the issue. Do you have any recommendations for books or websites or advice? Thanks! I am SO glad I found this place!!!
Hi! We used a method with my daughter that is for children with developmental delays. It’s called Foxx/Asner. It WORKED. It’s not easy, and you have to be consistent…in school and at home. It took my daughter 2 weeks and she had the idea. If you want the info email me at mommylovescymbie@gmail.com, and let me know your from the page. I can email you over a copy of what we did with her…the hand out I got from school. If you’re interested. Good luck
Hi Anheerah, my high functioning boy took quite a while. My “typical” boy wasn’t really using the toilet regularly until 3.5, either–boys can just sometimes take quite a while. When we were having good success, and then not so much, my wonderful pediatrician suggested just backing off completely for a few months and starting again slowly. We did that when he was 4 and it all went smoothly–by that point he was really physically ready as well as emotionally ready. Hope this helps! Karin
I agree. My boy was about 3.5 when it became his decision. Until then, if we tried, he just didn’t care. But once it was his decision, it happened pretty quickly. However, not at night. It was really until he was almost 9 (yes, 9) until nighttime became dry. And that was when he decided to try an alarm that would wake him up. His typical sister went late, too, as far as the nighttime…so probably a family thing, as well!!
Thanks, Jess! This is going to help so many of us!!
Love this idea Jess! Thanks so much for starting this. I just have a gripe with my son’s school I wanted to share in case any of you have ideas for me.
Yesterday my son’s (HFA/adhd/spd/anxiety, age 8, 2nd grade)speech session was changed from am to pm because of a meeting conflict. He was told about it in the morning but refused to go at 1:30 when it was time. His para brought him to the office where he was put into the conference room to calm down. He crawled under the table to hide and picked up a paper clip from the floor. The determination was made that the paper clip was unsafe so they wrestled it away from him and did not give him time/space to chill out. He was removed from under the table and staring out the window when he wet his pants. He was told he needed to clean up his mess. He stripped and threw a wet sock at an adult which they took as an act of aggression and restrained him. After the restraint he got dressed and punched his restrainer in the stomach which resulted in a second restraint. Is it just me or could this entire scene have been avoided by letting him stay under the table until he was ready to talk?
Ugh . That sounds awful! I’m so sorry your son had to go through that. Yes, it does seem like the whole situation could have been avoided if they’d left him alone. The making him clean up his mess part bothers me. He likely wouldn’t have had an accident if he hadn’t been in that situation in the first place. It’s not his fault that he couldn’t go to the bathroom because he was locked in a conference room! They should have known that changing his schedule with such short notice would throw him off. It seems that they could have been more prepared than that.
Yes, this sounds like he was overwhelmed by the change in his schedule. The reaction by the teachers and paras simply escalated the situation until he had a meltdown. His para especially needs to learn to see these kinds of indications and take the initiative to cancel such appointments.it sounds like neither of these people were autism experts and they got confused and overwhelmed by him becoming confused and overwhelmed.
I would ask for a meeting with them, and try to explain what happened without making accusations. Let them know we would’ve been much better to cancel the appointment or simply let him isolate until he calmed down. They need to know that he was not being bad, he was simply being overwhelmed by his disability at that time. Helping them learn will help your son in the future. If they don’t learn this kind of thing could be repeated and possibly get worse.
John Mark McDonald
I agree. I’d say their responses really escalated the situation. Also, the school needs to make sure that the calm-down area is kept clean and safe so your child can have time to regroup.
Sounds like you have my daughter in male form (she hit her principal after stating “I know tai kwon do and I’m not afraid to use it”). The “professionals” absolutely escalated the situation. They could have let him have the paperclip and had someone watch over him instead.
You may want to talk the people at school after you have thought about ways that you have handled similar situations. As also, be as calm as possible and use a non-accusatory tone (even though I found that very hard in our situation I mentioned above).
Thank you SO much Jess. My 3 year old with high functioning autism holds her urine for as long as she can…hours or even all day. She doesn’t want to pee. She will get extremely agitated until she finally goes and then she feels better. She fights me to sit on a training potty and is terrified of a regular toilet. I’m not pushing her to potty-train. I would love it if she just went in her diaper, but she won’t. She does her little dance, holds herself, even digs into her “girly parts” and gets really upset. I began to wonder if urinating actually hurts her, so I took her to the pediatrician. A test for a UTI came back normal. On several occasions when she is holding it and getting agitated, I put her in the bathtub and turn on the water and she will go in the tub. In the last couple of days I’ve tried sitting her on the training potty and putting her feet in little bowls of warm water (old slumber party trick). She will go immediately! I’m glad to have found something to help her, but where do I go from here? I still think it hurts her to go. I think I should have her seen by a doctor, but her pediatrician doesn’t seem to know what is going on. What type of doctor should we see? Urologist? We are beginning ABA in August and I’m hoping they can help, but I don’t think we can do this for 2 more months. I would love some advice!
Amy, my daughter (now 8) did everything you describe when she was younger. I was convinced that it was painful for her to pee but it turned out to be just one of her behaviors. We did potty training boot camp over the course of 5 days with our ABA provider and a group of special education graduate students who needed some therapy experience. It basically involved taking her to the bathroom every 10-15 minutes, lots of positive reinforcement and then extending the times. I had my husband take our son away to visit friends for a few days and I took time off work. The grad students came in shifts so I would not lose my mind and would stick to the program. It was exhausting but it worked for us. Once she was potty trained the behaviors mostly went away although we still need to reimd her from time to time to use the bathroom.
It sounds like this is a sensory issue, rather than a pain one. Giving her something she likes to do while sitting on the training potty might be helpful. a mild pleasant sensory stimulation can often help with other sensory issues.
John Mark McDonald
Thank you so much. It is so nice to know that someone else has gone through the same thing. Everyone else I’ve talked to has been baffled about this one. I appreciate the advice and support!
My daughter struggled with potty training as well. She wore pull ups to bed until she was 7. I still struggle with getting her to go on a regular basis. For her, she doesn’t want to stop what she’s doing, to go. I have explained to her that tv and movies can be paused, as well as games, and that her teachers won’t mind if she gets up to go to the bathroom. But she waits, and then when the urge hits, it hits hard. She will drop to the floor, with her legs in the ‘W’ and she’ll wiggle until she ‘gets a hold of it.’ I do my best to remind her to go, but have learned that I have to be very specific with what I tell her. She would say that she didn’t need to go anymore so I would tell her just to go sit on the potty and see…..well, she sat on it, clothes and all. Now I am careful to explain that her pants should be pulled down before she tries to ‘sit on the potty’. lol
Hi Amy, Our 4-year old son was also trained using the method Dawn described. He is in an Autistic program at school, so his teacher and Para started him there first. They asked us to send in super-high reinforcers that he would do ANYTHING for – in our case, mini-m&ms. They started taking him every 10-15 minutes, and told us not to worry about following up at home just yet. Then after he was up to going every 30 minutes with a good success rate, we took over at home as well. There were lots of accidents in the beginning, he got bored of the m&ms (swedish fish was next), but eventually he did get the idea of it. Pooping was a different story. That took a full six weeks longer – but just when I thought I couldn’t clean up one more poopy mess – he got the hang of it. Believe me when I tell you that one year ago I looked at him and thought, “this kiddo will never get the hang of the whole potty thing” – and in just a few months – TAH-DAH! I have a book at home that describes the method step by step. I can scan the pages and email them to you if you’d like. Let me know via email at nickysmomma@yahoo.com
Hi Amy-
I am having problems training my five year old daughter. One thing that was helping for a while was this thing called the “potty watch.” You can google it. It’s about $10. It is basically a timer that goes off every 30, 60, or 90 minutes to remind her to go, and then it resets itself. If you had something positive (this thing lights up and plays a little song) to remind her to try, and then you could do your warm bowls of water? The trick with ABA is not that they typcially come in and wave a magic wand, but more that they have the ability to be extremely consistent (because they are there for a few hours instead of 24/7). If you had a tool to help you with the consistency part, it might hold you over until you can get therapy set up. (that’s all assuming this is behavioral and not medical. If you think she really is in pain, follow your mommy gut and talk to the doctor again). I will warn you, after about 5 months with the potty watch, my girl has become bored with it, and is still in diapers. Hope you have better luck!
Chiming in on the potty/holding it in issue. My son has a very difficult time simply relaxing his body enough to go until the need is so urgent that he simply MUST GO IMMEDIATELY. We’ve put him on a slightly loose schedule (roughly: TRY going potty every 90 minutes) and find that when he is distracted by singing a song or something, he can relax and goes fine.
Also, young children have SO little control over their worlds that they will often control the only things they can: what goes in and what comes out. Don’t know if this might be at play with your daughter or not. I would suggest trying some of the techniques people have recommended and then, if there is still no improvement, start with a visit to a pediatric urologist just to rule out any medical issue. Good luck!
Thanks for creating this great resource.
spectacular idea!
I look forward to the twist of the wrist…..
thank you for setting this up
This is a fabulous resource…thank you so much! I have never reached out to a support group before but am quickly realizing that I should have, and long before now. My daughter (9 yrs) has been diagnosed with Asperger’s. First it was developmental delay, then Asperger’s, then not Asperger’s, now possibly Asperger’s or severe anxiety. Whew…. She receives speech therapy at school, and spends time in the resource room each day. Overall, she is highly functioning, but there are issues that have me baffled. I have a very hard time communicating with her b/c she can’t stay in the moment. She is constantly in her own head, replaying a show she loves, or a funny moment she is recalling. I have tried making sure that I have her attention before I begin speaking, but she quickly disappears. Example…last night I told her it was time for dinner but she never came out. I went looking for her and she was naked, preparing for a shower. When I asked why she was naked, she sd that I sd that it was time for a shower. We had a little laugh about coming to the table without clothes. lol
It seems simple enough but it happens ALL the time. She is really beginning to struggle in school b/c she can’t keep up with subjects like science and social studies. She has become a decent reader but only with ‘fun’ books. Textbooks have far too many words that she has never heard before so she does her best to memorize and then she just guesses for the rest. They do in-class study sessions, and are even told which pages to find the answers for their study guides. Even with all of that, she usually gets failing grades b/c she isn’t listening during the study sessions and then just guesses on the study guides, in spite of basically having the answers right in front of her.
I guess the issue is comprehension and focus, and I am at a loss as to how we can achieve either of those.
The other struggle is that after all of these experiences with her, I am now convinced that I am struggling with whatever it is that she struggles with, but mine was never diagnosed. I had almost identical struggles as a child, but somehow learned better coping skills than I have been able to teach her. It’s very difficult to know how to help her when I am unclear as to how to help either of us.
Any tips on communication or comprehension….or sanity? 🙂 I think I just needed to vent more than anything, so thanks for listening! I’m sure I will post again…b/c I could keep writing all day and never get all of it out. Have a nice day!
Hi! I was wondering if you ever used visuals or PECS with your daughter in the past. I’m wondering if that might be a useful place to start. My son is a little younger at 6 yrs old, but I find that to really make sure he stays in the moment, he still needs visuals from time to time. They use them on the bus with him to remind him of the rules because when relayed verbally he doesn’t always hear it. I’m just thinking out loud, but I wonder if you were to give her a PECS picture of “dinner” as you said it was time for dinner, then she’d have it in her hand and know what is coming. It may help at school too for visual schedules as it’s also being told to her.
I have a similar problem as an adult…if someone verbally gives me directions somewhere, I’m lost after step 2. But if I have a visual map and written directions…no problems.
Good luck!
Hi Chelsea, wow do I know this one! (With my 11 yr old HFA/ aspergers.) As he likes to say “Mom, could you please be quiet? I’m thinking right now…” Why be out in the world, which can be so tough, when you can be having so much fun in your head? In addition to various therapeutic interventions, one thing that works with him is making a hand phone. You know that shape you can make with your hand that looks like a phone? I pick it up and say “ring, ring!” and he picks up on the other end! Never fails. A small whiteboard that we carry around is another way we communicate when he’s in his head. I write on it, hand it to him, and he’ll write his answer. It gets him engaged in the conversation/ exchange. I liked akbulter’s response, too, and am looking forward to what others have to say!
Karin
Chelsea–
Another possibility to consider is an auditory processing issue. Sometimes it can be difficult to filter what needs to be heard from the rest of the noise, hence the difficulty with attention span especially to spoken direction. Our 9 yo son still has auditory processing issues, but Tomatis therapy was very helpful for him. Warning Tomatis is still controversial, not helpful for every child and can be expensive but was very helpful for our son. I would carefully screen your provider and make sure there is pre-testing to see if auditory processing may be an issue with your daughter.
We have also found that when listening seems to be a problem a tap on the shoulder to get him focused on me and what I am saying can be a helpful small reminder to bring him to the present task.
Yes! We found therapeutic listening to be very helpful. It was 5-6 years ago so I’d almost forgotten. We’d always thought auditory processing was part of my son’s puzzle but he always came back in the “normal” range when tested. Yet clearly he still benefitted from some intervention in that area.
In that same vein, we also asked for (and still ask for) extra processing time in his IEP. Teachers often repeated and/or restated directions for him to make sure he was getting what was being covered.
Hi Chelsea, Your daughter’s evolving diagnosis is almost identical to my son’s. (He’s 12, almost 13). You mention anxiety…is she being treated for it? For us, the anxiety seems to be the key component and when it’s under control he is much more engaged and in tune. For him, sertraline (generic Zoloft) was literally a magic bullet. I know meds aren’t for everyone but they were a livesaver for my son. He’s recently weaned off them, by the way, and so far so good.
And for what it’s worth, I think I also had/have many of the same issues, yet milder. I think that’s fairly common today…kids ending up with “magnified” versions of issues their parents faced.
Thanks so much for all of the responses! What an awesome feeling….to be heard. 🙂
There was so much I left out, in the interest of space (and keeping others engaged lol), so I will add-on here. She had visual schedules in her earlier years at school but then expressed to us that she no longer felt she needed them. The start of a new school year always brings about the need for one, until she learns the routine, but we have never really had one at home…probably b/c I am such a scatterbrain as well. It’s a shame that ‘life coaches’ are so expensive b/c I sure could use a life makeover. lol I often tap her on the shoulder or hold her hand before I start talking but if I talk for more that 5-10 seconds (sometimes a little longer, depending on the subject), I have lost her again.
Anyway…she has also been tested for auditory processing issues and she tested in the normal range. I had her tested again, but a less extensive test, and it was normal as well. At the moment, she is taking Methylin ER and sertraline but has only been on them for about 4 months. I was hesitant to try pills in the beginning…convinced that mommy could make it better, I guess. I’m glad we went this route b/c I do believe that it’s helping, but while adjusting meds it feels like the wait is endless.
We live in southern Illinois so we don’t have a lot of resources around here. My daughter is in a small school system with very caring teachers and I am convinced that love and care from them, combined with all of us having a ‘never give up’ attitude, has got her further in school than any therapies that have been available.
Another question…my daughter loves tv. And when I say love I mean she LOVES it. I know how much peace and happiness it brings her to get lost in her shows but I also feel that it’s part of our problem. Where do I find the strength to take away or severely limit her favorite thing, or do you caution against doing that? It’s hard to get her outside b/c she is terrified of anything that buzzes. She doesn’t care for sports b/c she doesn’t have the patience for learning. When she tries the first time and doesn’t do it perfectly, she cries and quits.
My hope is that by limiting tv I can possibly pull her out of her own head a little more, possibly get her more interested in reading books to stimulate her own imagination, or develop a hobby. Thanks, in advance, for any advice…..
An idea that might work here is using a WebCam to record instructions be played back for use with video chat. If TV is that absorbing to her, using it is a medium of communication might be effective. I know that this won’t always be practical but it might work. . The reason I think this is because I’m an autistic adult that is easily absorbed by TVs. I have found I can absorb information through TVs much more quickly than I can from verbal. I don’t know why, it just seems to work like that.
John Mark McDonald
Thank you, John. She has an iPad and uses Skype to talk to her grandparents..maybe I can use that. I welcome any and all ideas…this was such a fantastic idea!
Awesome. I need a place like this. Thanks, Jess. You rock! ❤
Here to subscribe, thanks Jess your awesome!
Watching this happen… Just so awesome, so incredibly awesome. (and trying to subscribe to comments again, didn’t work the first time. 😉 ). So amazing… I am forever grateful to be part of this community.
LOVE LOVE LOVE THIS! Why didn’t we think of this sooner?? Thank you, Jess, for your sort-of accidental cry for help – see how well it all turned out? 🙂
Chelsea – For some reason I can’t reply against your post.
Another thing to test/look at is her working memory, my son has really struggled since year 3 at school because the working memory problems become exacerbated with the fact that from year 3 onwards, it is a lot less visual, a lot more talking and since the kids are supposed to be more independent, instructions aren’t repeated as much – so all the crutches that were there for all the children seem to be removed around year 3 and that is when things start really falling apart if you have a working memory problem. Using the Super Duper Auditory Hear Builder software (not that expensive) has highlighted where the problems are and helped (I feel) as they also provide strategies – the http://www.superduperinc.com/ page has some great resources and for anyone that knows their cards in a box, they have converted many to apps now and they are brilliant. Also Difflearn has Earobics on special at the moment and I know that is used for APD – not working memory
I think that there is a limit to the “depth” of the replies. I noticed it too. It’s probably built into WordPress.
John Mark McDonald
i think what we can do to skirt it is to reply to someone who has replied to the question. does that work?
That’s what I did earlier
Yes! Great tools (the Earobics, too) that my son’s old resource teacher and speech path used with him and similar peers. I’d forgotten about those, too! I think I’ve blanked out some things, especially if they appeared during a stressful time in our lives.
Chelsea, wanted to reply to your comment above about limiting her TV. It is such an ongoing dilemma for us: To indulge the obsession or discourage it? My son’t current obsession is sports on TV (ironic that he has evolved into a obsession that is socially acceptable!). We try to keep a balance (easier said than done, I know.) and not discourage it completely because we know it calms him and gives him a chance to unwind from the stresses of everyday life. He’s actually gotten pretty good at monitoring himself because he now worries that too much screen time is unhealthy, bless his heart, just like he worries that the chemicals in Diet Coke are poison to me!
I seem to always come back to how hard he works every day to function and how little he has in the way of joyful, easy interaction…so how can I deny him his one true pleasure? Sorry, that’s probably not very helpful right now.
Audra, You have no idea how much help it actually is to me! Just knowing that someone else has felt the same way about this subject…i love this part the most, “I seem to always come back to how hard he works every day to function and how little he has in the way of joyful, easy interaction…so how can I deny him his one true pleasure?” That’s fantastic and exactly how I feel most days, but I guess I worry that my desire to make my child happy could be hurting her. Goodness…sure wish this could be just a smidge easier. lol Thanks so much for reaching out!
Ok I need some help. We recently took my 13 year old autistic son off of anti-psych meds after being on them for 7 years. I am so happy this happened as now he is present, and talking more. The problem… He now gets stuck on one thought and can’t let it go. Right now its waterslides. We recently took a trip to a waterpark and he LOVED it. Now he wants to go back. Like NOW. He is wearing his bathing suit under his clothes to school. We have tried redirecting, telling him its broke, closed, tried to tell him we can’t go right now. Nothing is working. To the point that he was running around the house yesterday screaming. I had to give him his anxeity medicine and wait for it to kick in just to get him to settle down. Having to deal with my son having such a STRONG opinion is brand new to me, and I would appreciate any advice on how to handle this. I love that he is expressing himself now, but need to find a happy medium. After all we have been through in the past couple weeks with him detoxing from the old medicine and now this, I am just at the end of my rope.
We’ve had a very similar situation. I’d suggest scheduling a time that you *can* go back to the waterslides, then writing it on a calendar and putting the calendar up in a very central, visible place. Then, each day until the day, you can look together and count down how many days are left until you can go. My kid’s biggest hurdle with this stuff tends to be the anxiety that if she doesn’t go RIGHT THIS VERY SECOND that means she’ll never go at all. So finding a way to show her that not now doesn’t mean never tends to be really helpful. Incidentally, it’s also helped her understand time. ;). Good luck!!
We have also dealt with this in numerous analogous situations. My son wants to go visit certain stars of television programs he enjoys, which we have explained cannot happen until he is 18–by then we hope to be able to explain that stalking is illegal. I agree with Jess that scheduling a time when you can go is very helpful to diffusing anxiety. We have found that even if that time is a year or several years away as long as we have a commitment to a return trip, the perseveration and anxiety diminish. But only make the commitment if you can live up to it because the whole system only works if your child can trust that you will follow through on the commitment later. But also look at it this way–what a powerful motivator you have just found. Certainly a return trip could be used as a reward for meeting other expectations.
HAs anyone ever had to get a Religous exemption for vaccinations? I need to register my daughter for Kindergarten and I can’t because she is missing her MMR and a few boosters. We are in NY and that is the only exemption we can get…just looking for some info on what to say. We have already done her annual review…b ut I need to get her CSE transition meeting going and they “can’t” until she is registered. Help……
I did not realize that each State could individualize the exemptions. I am in Ohio and we have Religious, Medical or Philosophical. Have you obtained the form? You may simply just need to “sign off” and check a box and if your only box option is “religious” then, in my opinion, check it. My daughter has only received a tetanus booster since she was diagnosed at 2 1/2. ~Becky
No in NY only Religous or Medical are options. Which is horrible…because I can’t get any doctor to give us a medical and it is not just a check box. You have to explain your religous views…and can be subjected to “sincerity questioning” and possibly asked for backup documentation. Since we are catholic…..and there is nothing there to “forbid” vaccines….I basically have to concoct something! It is just to get her registered and move on with our lives and the services she desparately needs. You are forced to act a little crazy. Just wondering if anyone else had to do this???
Thanks, Jess, this is wonderful, just subscribing for now.
Stepping out of lurking to say thank you for this wonderful resource… I look forward to helping and being able to ask for help.
Brilliant idea, this will be helpful to so many people!
My son is 6 years old and has to have a root canal surgery. However he has astmah – the doctors have told me that they will have to put him to sleep for the proceedure.
Is it safe to put a child this young to sleep for surgery? Also considering he has astmah?
I need help from all the Moms out there. Has anyone gone through this before? I am just really woried.
Thanks in advance for all your help!!!
Miguel, assuming it is being done at a hospital facility, yes, it is. When they put him under they will have an entire team monitoring all of his breathing, heart rate, etc. they will also, most likely have you give his inhaler or nebulizer treatment the morning of the root canal, too.
My eight year old has had many surgeries in his life, including when he was 19 days old. He has respiratory issues and has not ever had trouble with sedation. All that being said, make sure you talk to the doctor or team performing the procedure and voice any concerns and ask as many questions as you need to to feel comfortable with it. No question is silly except the ones you don’t ask but wish you had. 🙂
Miguel, my daughter is 9 and had oral surgery last year. I was very nervous as well but it turned out to be a wonderful teaching experience for her. We were careful to go over everything so there wouldn’t be any surprises. She was a little nervous but mostly wanting to be reassured that she would be completely asleep. After it was over, she never required any of the pain meds that were sent home with us, and she even said “wow, surgery isn’t as scary as I thought!”
Ask lots of questions so that you feel comfortable with the surgical team, but I am sure that all will go well. Best of luck to you and your son!
I’m an autistic adult and I had oral surgery, and I remember them asking me to count to ten and then wondering when they were going to start and then they said “all done.” It was alot better than when they used shots that were never fully effective on me, which was a nightmare every time.
John Mark McDonald
Thanks so much for setting this up, Jess! You are awesome.
need help! I have a 7 year old girl with AUTISM . She is mostly non verbal.
we got an Ipad but i cant find sample communicaion pages anywhere that are relevant do daily living.
anyone? i feel that parents that have been succesful at making pages should share…. i would and once i am succesful i willl….
fee very lost
My son’s IBI therapist has just started using a program on the ipad called proloquo2go….check it out. I think it may be just what you need.
Shallada – here’s a FABULOUS list of apps complied and reviewed by an autism parent — http://www.squidalicious.com/2011/01/ipad-apps-for-autism-spreadsheet-of.html – hope it helps!
Hi Shallada-
My daughter uses a PECS program on the IPad called TapSpeak Choice. It has been working well for us, but it is pricey – so is proloquo2go that the earlier poster just mentioned. Before we invested in TapSpeak, we tried some of the free communication apps out there, just to see if it would work for her in general. One that was pretty easy to manipulate was Choice Board Maker (free!). (There is also a free app called Autism Apps that shows you different apps recommended by parents with reviews and prices listed.) You can upload your own pictures into both of these programs in addtion to the pictures already included. I’m not sure if you have an Apple store where you live? I found the folks there to be extremely helpful. Many of them are actually trained on these programs, and give you honest feedback on what they liked and disliked and what different teachers liked. I do wish you could give these apps a “test-drive,” though – especially the pricey ones.. We have considered proloquo2go for my daughter, but it looks like it may be too complicated for her just yet (too much scrolling through pages) as she is only 2 1/2. It is available on the iphone, which would be easier for her to carry around… But TapSpeak is working great for her. I think the big thing to remember is start small and start slow. We offer two choices on each page for now. (more / finished; yes/no; books/watch tv; eat/play; etc..) Then we will add three… Then we will start to add navigation buttons that switch pages for her. Any program you choose should let you start small. As far as daily living stuff, you can create your own pictures and words (the app can read them for you), in most if not all of these programs, so just start small. I know it’s really overwhelming, but take it in baby bites, and be patient.
Thank you all so much for your help, i have proloquo and go talk now and talk tablet….. they all have their vertues- what i am trully having a hard time is with page customazation and language build up.
proloquo can be a maze…how to customize and make pages that are appropiate and meaningful for a 7 year old girl and how to simplyfy proloquo so that i dont loose her in the complexity of the linked pages…
You are all amaizing for taking the time to respond to my desperate plea
what i think i was trying to ask was for a place were parents even my self can load copies of the pages we have built as an example for other parents who struggle with this like myself
There is an awesome app called AutismApps which has lots and lots of useful apps all categorised – brilliant.
We just finished (finally) the school system’s evaluation process for ASD. We actually school at home, but our son needs services and this is the only way for us to get them right now. One of my problems with this whole process is that basically since he was an infant we knew he was different. We spent the first 7 years of his life telling pediatricians, teachers, and anyone else who would listen that he was different and that we had concerns. We were always reassured that he was developing “normally”. Now, after a year of speech therapy through the school system, someone finally sees what we have always seen and they agreed to evaluate. I know in my heart that he has autism. I don’t need some do-da who has spent the past 7 years ignoring a mother’s concerns now be the one to confirm what we already know. I want to tell them to shove it and go to hell.
There’s already been talk by them about him needing to be back in school so he can learn social skills. The times we have had him there for the evaluation testing have been terrible. He comes home after an hour or two and rages then has a meltdown the rest of the day. Do we think that it is in his best interest to go there for 7 hours a day so that he can learn how to interact with his peers? Hell no.
At what cost would we be doing that? For our child that cannot articulate how he feels…our child who cannot put words to the emotions…we would be causing more harm than good just so he could learn how to socialize better.
And…I’m afraid of them trying to tell us once again that there’s nothing atypical about him…that he is really developing “normally” and that we have no idea what we are talking about.
In a few hours, my husband and I will be meeting with one of the school system psychologists. She will go over the evaluation with us and answer any questions we may have. I feel like I’m going to throw up. And cry. Because as much as I already know it…we have been fighting to get him the help he deserves for years…for a “professional” to finally acknowledge it is probably going to push me over the edge.
Thanks for listening.
Kate
I am so sorry that you are having such a challenging time. Please remember that you are the only person in the world that knows what is best for your child.
You and your husband need to decide what will work for your family and then see which ,if, and how the resources available out there would apply to your family.
Its easy to forget but you are in charge and yes this process is overwhlming.
but there is always hope. Autism is a challenge but its also an incredible journey. filled with beautiful chos, advocay battles, and trully earned sucess.
My daughter was diagnosed at age 2 and trully she has been my teacher.
We may always mourn the child we planned to have once in a while but belive you me My little girl is the most amaizing hard working happy little one on this earth.
much love shallada
I agree with the above and would add that there is a reason for a diagnosis. The reason for it is that it gives you leverage. As soon as he is diagnosed, he becomes part of a federally protected disadvantaged minority that has extra rights and protections under the law. This can help you get them to pay attention and help you find and receive services. It is by no means a guarantee, but it can be helpful.
John Mark McDonald
Ok so…we are back from the meeting. As much as I already knew it, I can’t believe how unbelievably difficult it was for me to hear them say it…the diagnosis they gave us is only for educational placement purposes…it’s not a medical diagnosis (whatever). He definitely falls into the Asberger’s category according to them. We meet next week for the case conference and IEP. We have a lot of thinking and praying to do between now and then. We have two other children (who of course, we also school at home)…my husband is thinking that if we send our son to school even a bit of the time to get the services he needs and deserves that we would have to send the other two full time. I know he is worried about me…he thinks I’m about to break…I feel like it sometimes…because it has been 7 years of doing it on our own…but this isn’t about me. I want our son to have the best possible chance at success. (Of course, so does my husband.)
I think we have to look at what our goals would be for our son…what are his needs. He does not struggle academically. (He struggles with how information is presented to him.) He tests high average for his age in reading and math. The area he struggles with is social development. He is below age level. I guess I wonder why we would send him to school for 7 hours a day to work on social development. It’s not like we have our family locked in our house with bars on the windows. We go out in the community. The kids are involved in several different activities.
I don’t know…I feel like I’m fighting my husband on this one. I have no problem with the actual school. It is a good school…the people are nice…the teachers are good (for the most part). I just don’t feel like it is the right choice for our son or our family.
Why does this have to be so hard? The main reason that we reached out for help yet again was because we have been having so many behavior problems with our son related to him not knowing what to do with the emotions he feels. How did we go from that to talking about putting him in the public school system?
You are right John Mark…this is a necessary step to get him the help/rights/services he needs and deserves. Thank you for the reminder.
Thank you for the encouragement Shallada. I really appreciate it.
I am so sorry you are going through this.
There are a LOT of EFFECTIVE treatments out there that can really help your son learn to socialize and manage and understand his emotions.
The diagnosis is your friend because it qualifies you for all sorts of services through medical insurance, mental health insurance, and through the school system. Our experience with the school system was that once one person finally understood what they were seeing, the others came on board. If not, it might be worth trying to get a diagnosis by paying for your own assessment. You want to use a psychologist who has had a LOT of experience with diagnosing kids on the spectrum who are your child’s age.
Even if he doesn’t go to school he can improve his social skills and emotion management. There are as many different ways to deal with ASD as their are people with it.
Good luck
Some detail that might be useful.
With a medical diagnosis (by a psychologist) health insurance usually covers:
1) weekly psychotherapy that can really help you son to recognize his emotions and how to manage them (sometimes there are short term caps on therapy services so you should check details with the insurance company)
2) weekly speech therapy (though the insurance company will likely have hoops you must jump thro before they will pay for anything so check their rules) which will deal with social cognition (what is the other person likely thinking if they are saying or behaving in a certain way – and what are they thinking of me if I am speaking or behaving in a certain way). You will need to find a speech therapist used to dealing with spectrum, especially high functioning ones.
3) weekly occupational therapy to deal with any sensory issues, and some of your sons behavior may be due to sensory integration issues. Again most insurance requires an assessment and a formal plan before they will pay for this.
Depending on the state you are in or the specific insurance you have (assuming you have it) your insurance might pay for a weekly social skills group. I really like groups that use a lot of Michelle Garcia Winner’s work on social cognition.
Depending on the state you are in and the specific insurance you have, your insurance may cover 20 hours a week of ABA (applied behavioral analysis). Depending on how difficult your son’s behavior is in the home, you might qualify for this under regular mental health/medical insurance. Again usually this won’t be covered without an assessment and formal plan and goals.
While it is great to have all these services, the out of pocket expenses are still hefty (we run about $4000 a year, though they can be much cheaper outside California). And you have to take a very zen-like and detail-oriented attitude in dealing with the insurance company (regardless of where you live).
To get the medical diagnosis, you can use the school diagnosis and ask your doctor to authorize an assessment. Once you have that in hand, check with your medical insurance about exactly what they will cover. Chances are you will have to go out of network to find an appropriate specialist.
For my son who was diagnosed at 6 and who is academically brilliant, but socially and emotionally slow, I have found reading Michelle Garcia Winner’s work really helpful in understanding what he is struggling with.
What having your son at public school might be able to give you –
Speech Therapy
Psychotherapy
A behavior plan
If he is not in a regular classroom but in a special education room he will be taught in a very small group, they can also get a behavior plan in place (in special ed or a regular classroom) and have an aid with him 7 hours a day.
Its worth discussing with the school behaviorist what your concerns are and what they think the best placement for him might be. They often have a lot of experience and can come up with a good plan. In our public school, some of the most academically able kids are in special ed. At least at our school, you do not have to worry about him not being served academically in that setting.
Hope that’s helpful.
I’m a 42 year old man with Asperger’s. I came from a time when they did not diagnose people with autism and had to struggle through school all the way to Masters level without the help of a diagnosis. I was always told that I was to smart to be having problems. If I was having any problems it was because I wasn’t trying hard enough. I had to get a diagnosis the hard way; a degree in psychology. The other good thing about a diagnosis besides the help gives you access to, is a really does let you know what you’re up against. I now know why some things are hard and what I need to work on. This would have been amazingly helpful for me as a child.
I really suggest that you start looking for blogs and websites by autistic adults. Autism never goes away, but you can adapt. There are many successful autistic adults including those for leaders in their fields. this is not some sense you have to serve; there is real hope out there. Your son can learn to be successful and thrive, but it’s going to take some work in areas that are not normally addressed.
as for the issue of socialization in school, you’re right to be worried in that simply throwing him into a school situation will not help with socialization issues. Having Asperger’s means that you not get social concepts by association the way non-autistic people do. People with autism have to study how to be social; and it needs to be that blatant. The good news is that there are any number of autistic adults who’ve mastered such things and proven it can be done.
While it is true that it is helpful to social development to be around other peers, this is not enough in another itself. As a parent, you can help make the difference. What he needs is a guide for social situations that are confusing. He needs someone to come to when he doesn’t understand what just happened with other students or teachers. Now that doesn’t mean that you need to have all the answers personally. That’s what the online community is for. I would suggest frequenting sites for autistic adults like wrongplanet.org, where you can ask questions of autistic adults who have faced similar questions and found answers. I can’t really speak for anyone else, but I can tell you that if I had such a resource growing up, it would have made so many things so much easier.
I will always be available to help in anyway I can and there are many other places you can look as well. You can always contact me by e-mail at Scintor@aol.com and I will do my best to help you or at least point you towards another resource that could help.
John Mark McDonald
Thank you for your post. We have a daughter who is almost 16 and just now being diagnosed. For the last 15 years we have been trying to get someone to notice, to help us help her. We’re with Kaiser and because she is so very high on the spectrum, there is a 50-50 chance that they will diagnose her. But yesterday — after all these years — we finally found a counselor who herself has a son on the spectrum and who told us, confidently and with the most encouraging smile “I will not try to ‘fix’ your daughter — she is not broken. I will try to help her learn to navigate through her world, focusing on her strengths and helping her meet her challenges.'” I wanted to cry. Finally, after all these years, it feels hopeful. The social stuff is the worst — but right now I think we may have found someone who can help smooth her path. I will also keep fighting for a formal diagnosis for all the reasons you mention. Your post is like a light pointing to the future. Thank you.
Ok so I’m googling dsm iv to find the criteria for aspergers to prepare for appt on tue and I’m not sure what I’m where I should be. Is there a specific website address or place that I can type in to find the actual criteria. Any suggestions would be greatly apriciated. Not as Davy as I’d like to be when searching stuff online.
Try this: http://www.autreat.com/dsm4-aspergers.html
Let me know if you need any extra info. My oldest has Aspergers, my middle has PDD-NOS but both are very similar, but different. Good luck!!
Just google Asperger’s DSM-IVtr and it comes right up. Also this link goes to a copy. http://www.autismindicators.com/asbergers-diagnosis. Be prepared, it is probably not as impressive or as useful as you are expecting.
John Mark McDonald
Hi again. We need some assistance in the department of telling our kids about the Asberger’s diagnosis. I think we feel comfortable talking to our son about his diagnosis. We are concerned about telling his 10 year old sister (she’s older). Does any one have any recommendations? Any books that might help her understand her brother a little better?
Thanks bunches!
Kate
“All cats have Aspergers” is a really good book that is kid friendly
I was going to say that, but you beat me to it.
John Mark McDonald
We bought this book for our oldest called Everbody Is Different : A Book for Young People Who Have Brothers or Sisters With Autism. We bought it a few months after our middle son’s diagnosis and it really helped us all understand and work better together as a family.
(http://www.amazon.com/gp/product/1931282064/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=1557663599&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0EY6PTFJX3RHXM3R1JNC)
You guys ROCK! Thank God Jess started this page…I wouldn’t have known where to go.
John Mark I especially appreciate your insight. Thanks for being present in this forum.
I love this! Thanks Jess! 🙂 I have several questions re autism and play, and Floortime. My son has mild autism (not PDD-NOS or Asperger’s) and thankfully does not deal with a lot of sensory/behavior issues. He is very weak, however, in the area of play/creativity/social skills when it comes to relating to peers. Because he is not a “challenging” student, he seems to sometimes “slip through the cracks” at school. Right now in his integrated preschool he does not require a dedicated aide and does very well in a lot of the academic areas (he does receive speech, OT, PT). There seems to be little emphasis on play, learning to play creatively, and interacting with peers…instead I get comments from his teachers like, “When he’s older he’ll learn how to relate to kids through video games.” He has social IEP goals but they haven’t seem to work too hard to show me how he’s reaching them. I am wondering in this day and age how much I can argue that play/social skills MUST be incorporated into his education, for example, even during recess? He is 4 and in pre-K. It’s sad to me that even for typical kids play and recess are being shoved aside to drill them for standardized tests, etc.
Also – while his school’s program is ABA-based, I follow Floortime principles at home. There are no Floortime therapists in our area, that kind of therapy is not covered by insurance, and we don’t have the finances right now to pay thousands for a thorough Floortime evaluation/consultation/training. I can’t seem to find anywhere online (a message board, etc.) where I could just talk to people who do Floortime and ask them some questions. For example, we’re kind of “stuck” in a certain stage and nothing I’ve read in the books really addresses my son’s specific issues. Does anyone have any experience in Floortime and could help me out just a little? Thank you sooo much! I would much appreciate it, as my son does not do ESY and every summer I am looking for strategies to help him with his play skills. Thanks again!! 🙂
Deb
Alysia asked ne to reach out to you
Are you the Deb who is also my blogging buddy from “Open up and let go”- if you are then you know so much already
Just in case you are a different Deb I had almost the identical situation as you and here is what I did on Floortime
http://www.floortimelitemama.com/p/floortime.html
Are you on the yahoo board ?
Hi Deb-
I’m a little embarassed to say that I’m not familiar with Floortime, but I do agree with you that a wait and see attitude with regards to your son’s social skills is frustrating. My oldest has Asperger’s and we started him in a social skills group when he was 5. It worked wonders for him. I don’t know where you are located, so I don’t know if you have access to something similar, but I can tell you what they did. They established goals for him, such as “initiating play” where he would practice asking another child to play with him. All the kids in his group have some form of “high-functioning” (i hate that way of categorizing it) autism- meaning they are for the most part in mainstream classes and just need a little help socializing. (it is a separate therapy, not related to school). Anyway, the teacher would prompt him, “try asking Sam if he wants to race cars with you.” It went on from there, (other goals have been, maintaining a recipricol conversation with a peer for 3 or more exchanges, following group directives, playing with toys appropriately, etc.) and he is doing great. You could try this if you have a fairly regular group of children to play with, and you could do the prompting yourself. It sounds too simple to work, but it really does. It just takes patience.
Mamabear99 (Kate) here again…
We go for our case conference tomorrow. They are going to present an IEP for our son being in public school full time. Now, if you remember my previous discussion a few posts ago, we educate our kids at home.
So, I have to say, I feel a little defensive already. Especially since we specifically asked to see what a plan with partial days or less would look like.
Like this isn’t hard enough. Then we have to deal with people who appear to be ignoring what we are saying. I am not feeling good about this.
Can someone please give some advice?!
Thanks.
Kate
go in with an open mind. listen. take it in. don’t respond on the spot to ANYTHING. sign nothing but the attendance sheet. it’s a conversation. remember that an IEP meeting is a TEAM meeting. YOU are a vital member of that team. so take a deep breath and hear what they have to say.
in a lot of years of doing this i have found that the best way to be heard is to be willing to listen.
oh, and bring cookies. 😉
Thanks Jess. I’m just feeling extraordinarily overwhelmed lately with everything that is going on with our son. Not to mention the fact that our youngest has been showing the same/similar signs of Autism for the past year. I’m just tired of always feeling judged. Judged for the way they behave. Judged for our decision to educate at home. Judged judged judged. I’m sick and effing tired of being judged.
I know you are right…we need to go in with ears open, mouths closed. And, I know it’s my issue…the one where I want to tell them all to go to hell because after 7 years freaking years where I’ve been doing our own therapy at home because they all said he was “developing normally” now they finally see what has always been there and now they want to give us advice and tell us how to do things.
When we brought our kids home from public school 2 years ago, we finally felt like we had our son back…we got him to reengage with us…reconnect with us. And I don’t want to lose him ever again.
Of course cookies! Cookies (and chocolate) make everything better. 🙂
Bring Cookies – that’s what I have been doing wrong ! 🙂
By the way, always have a nice photo of your child on your folder or somewhere visible on the table so that it reminds everyone that they are discussing a real child, not just a statistic.
Hi Kate-
I totally understand what you are saying about feeling judged. It is really hard for us to shelve our own emotions and try to focus objectively on what might help our children the most. I agree with Jess, listen, listen, listen. Then go home and really process it, and try to put your own emotions to the side. If you are worried about your youngest son, it might be worth considering “delegating” some of the therapy for your older child to the school district, then giving you time to find some answers for your youngest. Try your best to stay calm in the meeting, and treat it like business (even though it’s not to you). If you can, bring someone else with you that can listen as well, so you wilk have a better memory of what they are offering. In the end it is your decision on what your next step will be, but try to look at the long term picture – will this help him become more independent. That helps me. And cookies are good too. Good luck. We’ll be praying for you.
Thank you.
I will let you guys know how the meeting goes…
Kate
So we are back from our case conference/IEP meeting. I’ve let everything sink in for a few hours. Here’s the jist…
As I expected (because they are required to), they presented an IEP for our son being in public school full time. I was very pleased with their plan. Their goals are right in step with our goals for him. They each took turns discussing their findings and plan for him. Then at the end, after we voiced our concerns, the autism specialist looks at us and said something like:
What we are asking is that you sign this IEP today. We as a team
think that this is the best possible educational plan for J. We feel that
this IEP is the best possible plan for him.
So, this is when I turned to the principal and asked her “Don’t we have 10 days to sign this or not?”
That is when J’s speech pathologist (who has been an AMAZING advocate throughout our journey) spoke up and said, “Actually, you have 10 SCHOOL days to sign it. That means, you wouldn’t have to sign anything until August.”
X gets the square.
Anywho…the resource teacher starts talking again…trying to re-cap the re-cap. She said that to sum it up, J would spend 98% of his time in his regular classroom with his regular teacher and that 2% would be receiving special education services including:
Speech therapy 3 times/month (which we already do)
OT once/month
20 minutes of writing help/day
To re-cap for you:
The autism specialist told us that the best thing for J to get the services he needs is for him to be in public school 7 hours a day. Followed by the sentence that he will spend 98% of his time in his regular classroom with no help.
Are you following me here? Does this seem asinine to anyone else? If someone can explain it so that I can understand how that makes sense, go for it.
That is all for now. Thanks for listening!
Kate
Good job waiting to sign it- especially if you are not comfortable with the recommendations. Since I don’t know your son, I can’t tell you if that is enough therapy or not. Often therapy at school is limited to what would make a student “function” at school, so sensory needs, etc often get left to the parents. It may be necessary to get additional therapy outside of school.
Devil’s advocate- your autism specialist may want your son to spend time modeling “typical” peers and that would be why she may want him in Tge classroom. If you think he needs an aid, though, you should tell them so. My older two go to a Catholic school, but bring a one-on-one aid with them (called a TSS here for therapeutic staff support) and their behavioral consultant observes once a week as well. That way they get the experience of interacting with “normal” kids, but have the aid to make sure they are successful. It has helped them immensely, but they are in small highly structured classrooms. (sorry about typos- typing on an iPod… ;). ) anyway, my point is, take your time to think about it. You just got the diagnosis. give yourself some time to adjust. There is no emergency here. He is the same boy he was two weeks ago. You just have some different opportunities to consider.
Erin — I do disagree with the lack of OT in the plan…I think he would benefit greatly from receiving OT once/week. However, my bigger concern is this:
we educate our kids at home now. The school’s answer is that he should be in school full time to receive all of the services he needs. If he goes to school he will be receiving services 2% of the time. So, how does that really benefit him? How can they say that he needs to be there if they are only with him for 15-20 minutes a day? And that is only for help with writing?!
I get the whole social skills perspective…that is an area he needs to work on. However, I’m more concerned about uprooting him from what he knows in order to give him 20 minutes or less/day of “services” that we could do at home. ( They said he would receive 15-20 minutes/day of help with writing activities.)
If he stays at home like we have been doing, he is still eligible for speech therapy 1/week. And doing OT once/month is pointless to me…we have been doing OT at home for years.
Since nobody ever listened to us until recently, we had to come up with our own therapy program…we worked with him on whatever he needed. When he was 18 months old, I bought a book and started speech therapy with him…did it for two years. He made awesome progress. We backed off when his only trouble was /r/ and /sh/ and /ch/. Again…the school wouldn’t do anything because those particular sounds weren’t a considered a delay at his age. So, when he turned 7 1/2 and still couldn’t say them, we again pursued an evaluation…that is how we met his amazing speech pathologist who has been such a great advocate for him and for our family. When he was three and we realized that he was having sensory issues but nobody would help him (pediatrician & preschool teacher kept telling us he was developing “normally”) we worked on those.
First of all it isn’t like we live on a compound where nobody goes out and nobody comes in. We are social people. He has social opportunities in gymnastics and swimming at the YMCA. He has social opportunities in Cub Scouts, Religious Ed every Sunday and church. He has social opportunities every time we visit a nursing home to spend time with residents. He has social opportunities on our trips to the grocery, library, parks, friends’ houses. He has social opportunities with his baseball team.
I guess part of what we were hoping for help with his his rage and emotional outbursts. The school is aware…we have told them many stories. His speech pathologist witnessed an event. However, they don’t have a plan for that. We even asked about it.
I’m feeling like we are really no better off than we were before the evaluation except for having an official educational placement diagnosis. (Even though we already knew the answer.)
Ugh.
That really is frustrating. I wish I had some good answers for you. Do you know if there is any ABA (applied behavioral analysis) available in your area? It sounds like you might need more of that than anything else in terms of dealing with the outbursts. I’ve been there with my son more times than I care to recall. His team works on coping skills with him now that he’s old enough to understand what that means. (I also managed to record one episode on camera- not only did it work wonders with the insurance guy, but I also showed it to my son, and he realized how silly he looked….)
As far as sending him to school, as I said, I was just playing devil’s advocate. If you don’t think the social scene is what he needs (sounds like you’ve got that covered), then it sounds like they are currently not offering you much. Everything is negotiable, to a point. Think about what you think he needs, and see if they can work with you. If not, you may be able to secure those services elsewhere without having to send him to school full time. I’m not sure where you are, but in PA we have something called wrap-around services, paid for by a combination of private and state insurance (meaning it costs you nothing) where behavioral aides come to your home, out in the community with you and even to school. Perhaps that would be an option on some level?
This sounds so frustrating. I am so sorry you are going through this, but your son is so lucky to have a mom as dedicated to his well-being as you obviously are. Hugs.
Thank you everyone. I appreciate that you have taken the time to reply. This is so helpful…to have different perspectives from people with different experiences…to be able to vent to people who have absolutely no emotional or familial connection to us. I am so thankful for this community.
Blessings,
Kate
In this kind of circumstance, what I would do is set up a bidding war. I think you are already doing a much better job than they’re proposing. In order to make this clear, I would make a document in the same style as their IEP, but replace their proposed interventions with the interventions you been giving him at home. I would then return the next to meeting with them and place the two side-by-side.
I would then say something to the effect of, “I’m afraid I cannot accept this proposed IEP for my son as it’s clear that he’s already receiving better support. How could I possibly consider placing my son in a situation where he is not receiving at least comparable if not superior support.”
The ball would then be in their court. If they don’t come up with a better IEP with more supports for your son, then say, “thank you for your time but it looks like you’d be best for my son for him to stay at home.” If they come up with a better IEP, then your son wins out in the long run. If not, stick to your guns, and keep your son at home. They need to remember here, that the most important thing in this entire procedure is your son. If the outcome is not his benefit, then there’s really no point to the whole thing.
John Mark McDonald
Hi all…Chelsea, again. lol I have another concern to toss out there. My daughter (B, almost 10, Asperger’s) is having trouble understanding or remembering (not sure which) what is and isn’t appropriate behavior at appropriate times, and I am not sure how to achieve this goal.
If she interacts with the family, it is always on her terms (of course!) and on her time, but when she chooses it, it is usually some type of tickling or semi-wrestling or general roughhousing. We navigate things pretty well at home, but last night presented a new challenge. My youngest is playing softball and we were at a game. Toward the end, B and another child were playing and chasing and then a few of the parents got involved and everyone had a ball. However, B tries to tickle and wrestle these children and adults too, and not everyone understands or appreciates the situation. To make matters worse, I have to watch her very closely b/c she has a tendency to tickle at random and her hands can end up in places they shouldn’t. I know she isn’t intending to touch anyone in their “private areas” but sometimes she does, or the other person simply doesn’t want to be touched by a 9 yr old, with or without social graces.
We have talked, a LOT, about what is and isn’t appropriate, but when I quietly remind her that she needs to keep her hands to herself, she looks so defeated and deflated. I’m not trying to steal her joy, only to keep everyone happy and not feeling uncomfortable or violated.
Any thoughts, comments, advice??? Thanks, in advance! 🙂
Chelsea,
Our son is the same way. And he’s rock solid and has no concept of his brute force. He loves to wrestle and the deep pressure sensation it brings…he loves being tickled too, but not lightly…that only irritates him.
Carole’s suggestion of social stories works for us too…for just about everything (usually).
We have this problem when he wants to wrestle with his friends for example at Cub Scouts…the boys feed off of each other and it turns into a madhouse quickly. The problem is that when the other boys are done, they stop…our son keeps going and it leads to problems which gets stressful for me as a parent. However, I find that when I can take the emotion out of my voice and just tell our son things in a matter-of-fact way, he tends to not only take it better, but he seems to process it easier. I suppose this is because he isn’t trying to decipher the emotion on top of trying to figure out what I’m telling him.
Kate
I have a large autistic son as well loves to wrestle and tickle. I dealt with it by wrestling with him a lot and letting him know that he was a very big strong boy. Whenever you do something that was potentially damaging, I would stop and remind him that he need to be careful and gentle because he was strong. (And I collected quite in collection of bruises while teaching in this lesson.)
Another idea is to get her used to the rule that as soon as one person asks to stop, the game is over. Even without this kind of situation, it’s a good rule to have.
John Mark McDonald
Tommy is the same way. We wrestle him at home for the deep pressure release and to burn off his energy, telling him what a big, strong boy he is. We worked on gentle touching for quite a while. And we still need reminders occasionally.But it has worked tremendously well.
Tommy is having a hard time with the part about it being over when someone asks for it to stop. There are so many ways to say “stop”. He gets confused.
Chelsea,
My son has a similar issue with tickling and rough housing. He can take down a kid more than twice his size in a heart beat with his Very professional wrestling moves. Explaining does not work. Showing gets confusing. The only really useful tool we have found is social stories. When we run out of ideas for them his teacher at school has been invaluable. I learned some great tips from the Gray Center.
http://www.thegraycenter.org/social-stories/how-to-write-social-stories
I will look into that, thank you! I had forgot to mention her size earlier, but she is built like a tank and does not know her own strength. She is completely tenderhearted and means no harm but she just doesn’t realize how strong she is, and how tickling isn’t always as much fun for everyone else as it is for her. 😦
Tommy is in the same boat. He is twice the size of every kid in his class. And he is just having fun. It breaks my heart to tell him no when he is playing with “good intent”. I think that is another reason we prefer social stories. It is an easy out from having to be the bad guy who is always saying no. Good Luck!
I am not very succinct, please bear with me.
My 6 year old son, dxed with pdd-nos and is mainstreamed.
We just had his first re-evaluation since age 3. The school psychologist recommended going back to our DX doctor and have him *undiagnosed* and have the autism removed from his record, in case he wants to have a top security clearance job in his future (like my husband, who is undxed). They suggest getting his dx switched to ADHD.
On one hand, my son is doing incredible – especially when we thought at age three, he was considered violent and we were not functioning as a family – he spent the majority of his day in a meltdown.
Now, he fully participates in class, including most recently (Feb ’12) – being able to change teachers successfully without an aid, to participate in his reading-level class. Most people (including teachers) do not have any idea he is on the spectrum (mostly because he is a rule-follower).
On the other hand however, his day is structured and scripted; which has helped him thrive. He can not tolerate the gen-ed bus. He can not tolerate lining up for recess, sudden noises or touches, or other people not following his scripted routines/following the rules.
He still qualifies for an IEP – but only in one area: adaptability. I’m assuming next year we will have to roll over to the 504 plan (which I refused this year).
I am wondering why the school would suggest removing his autism label. Do they have something to gain from it? IS it truly better for his future to NOT have a DX? They would like to have him (and his NT twin) tested for highly-capabile. Is that something they can not do with a DX?
I do not want to hold him back, but I do not want to be duped into giving up our legal protection.
His NT twin, who I suspect to be very ADHD, lost his IEP last year due to graduating from speech (which I didn’t agree with); now that we are looking at ADHD and sensory issues, we do not have legal protection and battle his teacher almost weekly about using aids (chewy, and having an aid remind him to go to the bathroom – he comes home soiled once a week).
My question really is: why would they encourage me to have him “undiagnosed”? Do they have something to gain from this? Can they graduate him off of an IEP if he no longer tests as needing one – and just needs supports?
What kind of supports would be available/are typical with ADHD kids with or without a DX?
Oh, and although he is working at ‘pier-level’ for fine motor skills (writing, drawing, cutting) – he is receiving low marks for rushing and not being able to draw well, nor form his letters on a line and with punctuation/capitalization. That wasn’t marked as a qualifer for him, but if he gets low marks, how can it be pier level? Do schools consider anything “not completely failing” to be pier-level?
I don’t want to sound paranoid here, but this sounds like they’re trying to do it for their benefit not his. What sounds especially weird to me is their basis for doing so. High security clearances go through all of your records not just the latest ones if they have a question with autism and they will question it even whether it’s been undiagnosed or not. I know an awful lot of schools are facing pressure to cut down their social services simply because of budgets.
On the other hand, I don’t think they’re trying to dupe you and are taking away your legal protection. I think they are being pressured to cut down on their special needs kids load and are therefore wanting those who are doing the best to no longer be special needs.
As someone who’s had Asperger’s 42 years as well as two children with Asperger’s I really don’t believe it’s something that goes away with training. It’s something you can learn to adapt to. The only possible reason to undiagnosed someone would be they never had first place. Even if he’s adapting perfectly well to a main treatment environment and handling the challenges that come is way, it will always be something that affects his life.
I especially wouldn’t do this at the age of six. He still has an awful lot of developmental and social hurdles coming up. Even if he’s doing very well now, that doesn’t mean that there’s not going to be things coming up that he’s going to need help with. It seems like there’s a misunderstanding here that you cannot be on the spectrum and be high functioning. I went through school in honors and AP classes, but that didn’t me I didn’t need help in certain areas. Of course, back in those days, there wasn’t any help available.
Autism doesn’t mean that you sit there in special ed in this disability services all your life. There are plenty of very successful professionals with autism. It doesn’t mean that you’ll be unable to function. It does mean that there will always be times which you will need some help in some areas. I think that this request to undiagnose your son simply comes from a basic misunderstanding of what autism is on their part.
John Mark McDonald
Thank you, John. That is exactly what I needed to hear! Legally, can we keep an IEP if he doesn’t need accommodations? Currently, they tested him and said he only needs accommodation in one area – but like you said, that can change with the developmental and social changes the future holds.
It sounds to me like you already know what you should do. It sounds like you don’t agree with removing the diagnosis. You should follow your gut on this one. If he has no diagnosis, the school saves money on services they don’t have to offer him. You know your child best. Also, many children develop more issues as they near puberty. It might be harder for you to reapply for services by then if you lose the diagnosis now. Follow your own intuition on this. Good luck.
Yes, I do not agree with removing the diagnosis – I want to keep the legal protection if we should need it in the future. It just really surprised me that the school would suggest having the DX reversed because he has progressed. That the school saves money makes perfect sense to me – that gives me understanding at why they would suggest it.
I do worry about future issues, especially around puberty and changes in schools as he ages, etc.
Are we entitled to keep him on an IEP if there are no accommodations necessary at this time, other than giving him advanced warnings of changes? Can they legal force us off an IEP if they determine he does not currently need services?
The Individualized Educational Plan (IEP) was created to keep schools from warehousing disabled and troubled students by putting them in one classroom that was out of the way and then ignoring them. I know this because I’m from the generation when they used to do this. It forces the school to, when they find a problem, at least think about what to do about it.
Not having an IEP simply means that a given child does not have any problems or disabilities that warrant any specialized instruction or accommodations. Having said that, I cannot conceive of a situation where a child with autism would not benefit from an IEP to at least communicate to the teachers and staff that they are on the spectrum and may need leeway in certain areas. To put it another way, someone on the spectrum will always be an autistic person in a neuro-typical world. This will always present challenges and opportunities that are different from the norm. I say this as a 42 year old man on the spectrum with two children on the spectrum as well.
As far as I understand, being on the spectrum is a federally recognized disability, and therefore you are always entitled to a IEP, even if there are no extra services required. As I may have said before, the focus of an IEP should always be focused on the welfare of the child involved, regardless of any other considerations. I would simply remind them that ASD does not go away, no matter how well the child is adapting. As long as there is a disability, an IEP is basically a requirement.
John Mark McDonald
I often remind our team that if my child is doing well with the services provided, it does not mean that his autism is gone, or that he is cured, but rather it is proof that what we are doing is working and that those services are needed and warranted. They are covering their own behinds. You have to be the one looking out for your child.
Still reading all the comments and I think it’s wonderful that this community is reaching out to one another.
I have something that I’d like some input on. I believe my son is “sensory-seeking”… please excuse me if I use terminology out of the correct context. I believe that I am also sort of sensory seeking because I am also sensitive to touch, but in a good way. I use it as another sense, like finding my way in the dark and being able to know exactly what I’m holding without looking. Superpowers? LOL… no. What I mean to say is that I have nurtured this sensitivity and use it to my advantage and view it as an asset and something to nurture and develop and not to downplay. I also have very good eye-hand coordination.
My thing is this… I would like to do the same for my son, to somehow open that up for him. How can I do this? His sense of touch is not so sensitive that would overwhelm him… He loves to be touched and I’d like to show him the possibilities but don’t know how…. Are there books out there that can speak to this? Does anyone know what I’m talking about?
Thanks.. Debbie
I wrote an article about sensory issues and autism for my local autism group (REACH for a difference of Abilene) that might have some of the information you are looking for. I’m looking for a place online to publish it, but haven’t found one so far. In the meantime, I would be glad to share it with you if you could send me a note at scintor@aol.com or on Facebook at http://www.facebook.com/Scintor . Sensory seeking and sensory overload are huge deals in my and my children’s life as well as many other people on the spectrum learning to identify what senses someone on the spectrum is sensitive to, both good and bad, can open up the world to them.
John Mark McDonald
Hi everyone,
I’m a teacher and am working to get my Master’s in Applied Behavior Analysis. I’m currently writing a family perspectives paper and need to contact parents of children with Autism to better understand the needs of family members of children with Autism. What can schools or communities do to assist family members? What type of support aren’t family members getting that teachers can provide or at lest get you the information for?
I would love any input! Please feel free to email me if you don’t want to reply to the comment at kmchri10@asu.edu.
Thanks,
Katie Christopher
Does anyone have any suggestions of a method for teaching our son with Asberger’s how to spell? He is a phonetic speller and has been super frustrated with learning how to spell. Then again, he’s only 8 and maybe it’s not that important yet. I don’t know…thoughts?
Also…any suggestions for ways to encourage him to practice writing? I’m out of ideas. It is something we really need to work on.
Thanks!
Kate
Do you have a tablet or iPad or iPhone? Or does his school? There are some great apps for teaching spelling, sounding out words, blending sounds, etc.
Could you please tell me what the apps are? We school at home.
Thanks!
Sure! Here are great places to look for apps for kids with Asperger’s and all special needs kids:
http://www.squidalicious.com/p/on-ipads.html (click on her spreadsheet)
http://momswithapps.com/apps-for-special-needs/
Personally, we also have Rocket Speller and Build-A-Word, plus the Bob Books series which helps with reading too.
Separate from using apps, you can take words/sentences from his favorite books about preferred topics for him to copy and practice. A very very good friend gave me that idea and it’s a great way to feel a connection to the words.
Here are some other app lists:
http://www.geekslp.com/category/apps/target-audience/slp-apps/and one of the best is http://itunes.apple.com/au/app/autism-apps/id441600681?mt=8
This is mostly just a vent, but also looking for advice from anyone who has any to give…. son is 5, to be 6 in the fall. ASD/Asperger’s/SPD/ADHD. Lots of sensory issues, lots of anxiety, bit of OCD. Went through a horrible, horrible, did I mention “Horrible”?, biting phase from the age of 3 though turning 5 last fall. He finally stopped, and I thought we’d made progress. Yesterday it started again, seemingly out of the blue when he’d not bitten at all in about 9 months or so… and it’s almost like we’re right back where we were before all of the OT and the iLs and the play therapy and the behavior therapy and the floortime and the music therapy… color me at wits end… what to do? thoughts, ideas, input welcome. He’s to start Kindergarten in the fall and this won’t fly at his new school.
My son is in almost the same spot. But he is not facing a new school in the fall. We have had a lot of visitors to our home the last month and now we are facing the end of school for about three weeks. Thank goodness we will have school in July, but August will be no school again until after Labor Day. Is it possible your son in feeling anxiety about switching schools? A meet and greet or two before school starts might help relieve anxiety, if that is the issue.
My little guy is 5 with PDD. A couple of days ago he thought it was a good idea to remove his pants and underwear after school on the playground.
Full frontal nudity and 4or 5 older girls were sitting right there facing him.
Yesterday after school a few kids were calling him Wee Wee Boy. Others laughing. The trouble is that he looks typical a lot of the time but does things that are totally socially unacceptable to kids (and saying non-sensical things), Breaks a mama’s heart to see them turn on him.
I would be asking his teacher to identify the older children and discuss with them privately the fact that he has PDD and therefore challenges and that they are in effect bullying him and appealing to their better selves, should stop. It might work. Kids can be cruel but if they can be made to understand why he is doing it, perhaps if they were designated to help him out, then they might stop and be his advocates in future.
I know this won’t help the kids on the playground, but my son’s Kindergarten teacher said the best thing a parent can do is go and talk to the class about who your child is and why they act the way they do. She said the year goes much better. When I did it I talked about the similarities, how he tries to do his best just like they do.. I brought in a scribbled picture and talked about how proud I was of him. The expressions on their face were priceless! I talked about what they like, what he likes that is the same and the things that are different. AND the fact that he has autism and Fragile X which makes him different… along with a few of the things he struggles with. (He has super hero senses.. his hearing for example!) I did this same talk for his Sunday School class when he was out. The next week a kid said, “you mom told me your secret.. you are a super hero!” BA HA.
Of course the most important part is that they should never make fun of him or treat him mean. AND he learns by observing peers so they are often his teacher. I sent a note home to their parents just in case there were any conversations that could be had at home.
At the end when I asked them what questions they had they were things like, “what is his favorite color?” Ahh… gotta love kids!
As far as the older kids those comments would fall under bullying… which should be taken care of by the school.
My daughter’s doctor (developmental pediatrician) recommended medication for the first time yesterday. My daughter is 3 1/2 years old. The doctor is recommending Risperdal. She only wants her to take it “as needed.” I am so nervous and sick about it. It would be to help control irritability, aggressive beahviors (toward herself and my husband and I) and mood swings. My daughter does have these struggles, but I don’t know if they are severe enough for medication. Other than the aggressive behavior, I don’t know if the other symptoms are worse than many typical 3 year olds. I’m torn. I do want to try something to see if it will help her, but I definitely want the option of stopping immediately if we don’t like how it affects her. The thought of giving my baby an “anti-psychotic” medication makes me squirm. We recently started the gfcf diet (about a week ago) for her and she is scheduled to start ABA in August. I am tempted to wait on the medicine until we see if these two things help. Has anyone tried this medicine for a child this young? Why do these decisions have to be so difficult?
Hi Amy-
I have not tried any medications with my children, so I can’t speak to the pros and cons of the one your doctor is recommending, but I have learned that the very best thing you can do with any of these decisions is to follow your mommy gut. If you want to wait, then you should consider that as valid as any advice you receive from a professional. Also, it sounds like you are trying a bunch of stuff at once. Sometimes it helps to try just one thing at a time, so that if you see change (good or bad) you can attribute it to one thing instead of guessing at which therapy helped or hurt. This isn’t a sprint. It’s a marathon, so slow down and pace yourself a little. Take time to think things through, and most of all, trust your own instincts- you are the mom.
I have some friends with kids who have been given Risperdal and it certainly isn’t a “take as needed” medication, it has a long go on/come off period and has some fairly significant side effects although it can be very effective – these are older children. I agree with Erin, don’t try everything at once and given her age, I’d be trying behavioural interventions before medication as they can have considerable positive effects then if that doesn’t work or you need extra, then try the medication. Now this is just my opinion after I have watched other parents go down this route and when the behaviours after all other interventions haven’t been sufficient, then they have done medication but tried other things first.
Globe and Mail Article:
http://www.theglobeandmail.com/news/national/social-media-helping-autistic-children-navigate-the-world/article4358736/
I am taking my son for the formal autism evaluation at the center for disabilities and development at U of Iowa on Monday. Nervous does not begin to describe it. It took us a full year to get this appointment. Anyone have any tips or suggestions for me? Apparently it will take about 5 hrs with one break. My son is 5 yrs old, ADHD (H), SPD (seeking), and likely Asperger’s/HFA, but no idea what will come out Monday. He can have spectacular meltdowns and can be very aggressive. I don’t know what to think or how or if we should even try to prepare for this… any advice appreciated.
Just take him just like he is. They are used to autistic behavior, and they want to see it. Just let him know that some doctors want some advice from him. 🙂
John Mark McDonald
Try to have a mental (or even better written) list of behaviors that you find concerning or “different” and how often during a day he does them. They have all these fun questionairres for moms and dads to fill out, and it can be kind of overwhelming to try to recall details of an “average” day in that setting. For example, my daughter toe walks and flaps so much, that I simply don’t notice it too much, but it now (now that it’s been pointed out to me by the pros) gets checked off as “often”. It’s hard to be objective in quantifying something that you associate with your child’s personality. It never dawned on me as being different that my son wouldn’t let you change the tooic of a conversation, but the psychologist picked up on it right away.
Most importantly, remember, whatever they tell you, you will leave that appointment with the same precious little boy you walked in with. You may just have a little more information and insight into who he is.
Thanks, your replies were helpful. Much to my surprise, he was on ‘best ever’ behavior today and he ended up with a diagnosis of PDD-NOS (along with the ADHD and SPD). The Dr doing the evaluation said he fit the diagnostic criteria for Asperger’s but didn’t display the severity she would normally expect to see for that, so she was giving him PDD-NOS. I am not sure that makes sense, but I’m not a Dr, I don’t suppose there is much I can do about it, and I suppose it doesn’t matter in the long run… does it?
It shouldn’t matter. He should qualify for assisted services, which is one of the main points of a diagnosis. The differences of Autism, Asperger’s Syndrome and PDD-NOS are often a matter of how well you are doing that day in my own experience. I would also urge you to remember that people on the spectrum are capable of amazing things like artistic and scientific achievement that no one else in the world can. He is a wonder on his own merit and with your support and some help from others, he will amaze you.
John Mark McDonald
Thanks, John. We’ve been operating on an ‘as if’ basis for two years now, as every therapist we’ve seen was convinced he had “either Asperger’s or HFA” along with the other things. I denied it, argued at first, but it became clearer to me as he approached 5 years old.
He is very bright, very inventive. He is teaching himself Japanese from Godzilla videos. He mostly taught himself to read, seemingly over night. He has a huge vocabulary which he uses mostly correctly (not entirely). There was no significant language delay when a period of physical deafness is taken into account. The big problems are social, non-verbal communication, and emotional (frustration tolerance/anger/aggression)/sensory.
I know he has a chance to do amazing things. I know this. Yet, today, putting my signature on that line adding this diagnosis to his medical record, and hearing someone else say those words to me still felt like a kick in the gut, which I for some inexplicable reason was absolutely not expecting.
So thank you again for your words of encouragement. They mean the world to me tonight.
Your quite welcome. I am both on the spectrum (Asperger’s) and have two kids on the spectrum. I get worried and annoyed by some groups that treat autism as a fate worse than death. There are plenty of successful adults out there on the spectrum, so there is no reason to lose heart because of a diagnosis. That’s not to say that everything will be sunshine and roses. There are going to be a lot of challenges and hard times, but it is also not time for sackcloth and ashes.
John Mark McDonald
What does a neuropsych do and when would they come into play? My son is 7 and was diagnosed PDD-NOS 2 years ago. Since then he has received OT, PT, and SLT (for communication skills) through the school system. He also attends an outside social skills group run by a psychotherapist, and outside OT when we can get insurance to agree to it. He is completely verbal and has some sensory issues. We only saw the developmental pediatrician for the diagnosis and our regular pediatrician is useless for autism. So I’ve been flying solo, and I’d like to get a professional co-pilot on board. Right now I pass some things through the psychotherapist, who is wonderful, but I’m wondering if a neuropsych should be a part of our team? Thanks.
hi, i don’t have an answer for you and i know this was posted a long time ago, but i am in a similar situation now with my 6 1/2 year old daughter and am curious what path you took. thanks.
Okay, I’m out of ideas and would love any suggestions. My son is almost 5 and has had aggressive behaviors in the past – hitting and kicking mostly, but also biting occasionally. I was so happy about a year ago when he seemed to be controlling himself better and we weren’t seeing those behaviors. Then a few months ago, the aggressive behaviors started again worse than before. There are some clear triggers, one being when other children cry; he just loses it every time. However, sometimes there is no clear trigger for the agression. For example, today he was getting into his carpool for school and bit a girl for no apparent reason. We’ve tried everything we can think of: social stories, sticker charts, time-outs, Listerine on his tongue for biting. Nothing seems to help much or for very long. He does know that he’s not supposed to hurt people, and celebrates with us when he is able to cover his ears or walk away instead of hit/kick/bite. But sometimes it seems like he just can’t let go of something until he hurts someone. I’m so frustrated and out of ideas. Any suggestions?!?
Stacy, I had many of the same problems with my (now 5.5 yr old) son too. It was especially bad from the age of 2.5 – 5. We were desperate for solutions and it seemed that nothing was working. We also tried all of the things you mention, the charts, the punishments, the rewards, the encouragement. Every child is different and I can’t begin to say that what helped us will help your son, but in the end my son was most helped by three things: OT, iLs therapy, and ultimately guanfacine (he also has severe ADHD). Of the three, the guanfacine was the turning point, but by itself wasn’t the answer. We still deal with aggression, but not multiple times per day at school like in the past and not with the severity we used to see. The iLs and the OT seemed to help with the sensory issues which were underlying a lof of the aggressive episodes and I think the guanfacine helps a tiny bit with his impulse control. We also cleaned up his diet a lot, removing preservatives and food colorings and upping protein intake and limiting sugars… but I can’t say if that actually helped or not (I think it did, but no proof and ymmv). Wish I had more/better information to pass along…
My 7 yo daughter has a PDD-NOS diagnosis and is currently taking Celexa for anxiety issues. Celexa has helped tremendously in her ability to sleep at night and in her own room, not sure how much it has helped with her overall anxiety levels, particularly in regards to school. Her pediatric neurologist now wants to start her on Intuniv to help with attention and focus. (She tends to drift off into her own world and has trouble concentrating at school.) Anybody have experience with Intuniv and care to share your story? My daughter is very high functioning, verbal, few emotional outbursts, and primarily struggles with extended concentration and social skills.
Suzanne, see my reply to Stacy just above your original post here. My son, 5 soon to be 6, diagnosed with ADHD and SPD and also just formally diagnosed PDD-NOS started on Intuniv in March. After a few weeks we switched him to the generic, guanfacine, b/c it is shorter acting and he had some troubles with getting too lethargic in the afternoons on the longer acting Intuniv (name brand). The switch did the trick. We no longer see the lethargy and we are also not seeing any notable side effects. He continues to take the short acting generic at 1mg 2x daily and it does seem to help — some, it’s no miracle cure — with the attention issues and for him also with impulse control and aggression. That said, I have not seen that it has helped in any other way with social issues for him… but it does seem to help with attention for him. Just our recent experience, but I hope it helps!
Oh, and, sorry, meant to add, we saw similar benefits on the Intuniv as we do on the guanfacine… but the lethargy wasn’t acceptable and did not go away after a few weeks as purported.
Be very careful. These classes of medication tend to work differently for each individual. Knowing how it worked on one person may not tell you how it will work for your daughter. If you try it, watch her carefully and ask her questions. It took me nearly 20 years to find a good balance of medications to help with some of my autistic symptoms with side effects I could tolerate. We are still tweaking those for my two children. Be patient, because there isn’t any other way forward besides trial and error.
John Mark McDonald
What a wonderful resource! It’s beautiful to see everyone banding together here in support of one another!
I am mama to an amazing little girl, almost 3, who has the super powers of Asperger’s. We are blessed to live big with this sweet girl. Big joys and big sorrows.
We’re having one of those days. The ones that creep up without warning and every reaction to every event of days past come pouring out of a tiny body at a speed like no other. The broken pieces of my heart shatter a little more on these days as I try everything I know to bring peace to my baby and it’s still not enough.
This too shall pass and we will find peace again for a moment but what I’m hoping you can help me with is how you boost your spirit on these days? Where do you turn? What do you do to find hope and acceptance on these days? For me it’s an ongoing process but I’m in need of some new material.
To be on point…we just settled a two hour meltdown. Her little body was filled with the stresses of celebrating the 4th. She’s sleeping peacefully now. I’m feeling sad and broken down as is typical after the storm. What would you do for yourself at this point to return to a positive attitude, to prepare yourself to tackle the rest of the day?
Oh honey, we all know this feeling. It hurts so much to watch your child struggle and heaven knows it’s exhausting for both of you.
Use the time while she recharges to do the same – find a quiet space for yourself, take a quick bath, step outside and feel the sunshine on your face.
Allow yourself the room that you need to recover your energy, just as she is while she sleeps.
The positivity can be tough to find, but it’s in there. Hope is ALWAYS in there. And it does get better over time. Together, the two of you will both amass tools that will make these times less frequent – more avoidable.
In the meantime, when time’s are hardest, I take comfort in Mary Anne Radmacher’s words –
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.”
Hang in there. And remember to take care of YOU.
Jess
Jess, I want to thank you so much for writing this blog. I cannot express how much it has helped me the last few weeks as we try to move around this maze of IEPs, therapies, preschools, diagnoses, etc. There are days where I am not sure how I can do it. My husband is so optimistic and I am too but all the worries from Will he be bullied? to Will he ever have a friend? come streaming at me all at once. Luckily he is three and actually can speak so we are blessed to have that. And man, he is smart and funny to boot. Did I mention handsome? 😉 In all seriousness, I just want to thank you for this. The last few days have been especially hard and I am become more and more worried about renting a house on the Cape with a group of friends. Although they understand, will they really when he has a freakout? I suppose I can take this all in stride and just enjoy each moment to its fullest and not dwell on the what ifs, and negatives. Just thanks.
tis fills my heart. and i know the worry and the fear and the what the hell do we do? you try.
thank YOU.
xo
Hi Everyone. I know Jess has written a few times about Brooke and the repeating game she likes. I haven’t seen any other moms whose blogs I follow talk about the same thing but my son (who is 4 and just beginning to say a few words) does a similar thing. I’m wondering if it’s something that he will grow out of (I know no-one can answer that) or if there are any strategies that we might use to curb the frequency of it. He really gets bent out of shape and cries real tears if (for example) we are driving down the road and he sees a sculpture of a lion and then he says “lion” but we don’t repeat it. We usually indulge him but sometimes we just miss it or don’t understand the word that he’s saying so we can’t repeat it and he has a major meltdown. Any help/advice would be appreciated. Thanks.
Autistic kids have a hard time with social communication and connection, but this doesn’t mean that they do not crave it. This game is a form of social communication and connection for him, and therefore essential to him. He is trying desperately to share his world with you. My suggestion would be that rather than indulging him, that you join him. Engage with him in the game and slowly add rules that make things easier. Two rules I would add are that you get to point things out to him and he has to say them, and a “repeat rule” where he has to say the word again before you say it. This should be done at home where things don’t pass out of sight to get the new rules down before it is played in the car. I hope this is helpful to you.
John Mark McDonald
My son used to be like yours with the meltdowns if we did not repeat what he said. In my opinion, it wasn’t functional for us to just repeat exactly what he said back to him, so we started to elaborate on what he said. For example, when your son says “lion” I would reply with, ” I see the lion. A lion roars really loud.” He got upset at first with us not repeating him exactly, but after a while he started to repeat more words that we said. So he would say “lion” and I would reply with “I see the lion. A lion roars really loud.” and he would say “Lion roars!” and giggle. It’s all about expanding the communication while giving him the reassurance that you understand what he’s saying. I’m no expert, this is just what has worked in my experience. Best of luck to you!
Thank you for the suggestions. We will work on them and see how it goes. This support page is a really great resource 🙂 Love to you all!
Hi all — I haven’t posted here before but just lurking and reading has been helpful.
Today, I mostly just need a spot to vent for a minute – but who knows, maybe there will be help out there too!
My son N is 7 and seems to mostly be dealing with sensory processing issues. It was a heck of a year at school trying to deal with this new reality, but by the end of the school year I felt we were starting to get a handle on things.
Then – he and his dad went to visit grandma for three weeks.
I arrived today. Took an overnight train and crashed for a nap when I got in.
Right now N and I are sitting on the floor of the local multiplex playing on our iPhones, while dad and aunt and grandma are inside watching Madagascar 3D. Why? Because apparently no one listened to me when I reminded them to ask him if he wanted to go. Or if he was okay with the 3D. (I thought they had, but I was asleep so I just trusted then to do it.) This is a kid who can’t handle noises; needs earplugs for even regular movies; and needs a lot of prep for that kind of outing. But no, they wanted to see this showing, so that’s that.
So when we arrived he had a total meltdown. No surprise. Wouldn’t set foot in the theatre. And apparently dad had purged the earplugs I keep in the car. (why??)
He’s fine now, curled up in my lap on the floor. And I don’t care about the wasted $ for the tickets, because it’s not my fault (and I really didn’t want to see this anyway!)
But I’m not looking forward to dealing with grandma’s cluelessness when they get out; and I’m out of reason pissed at dad. Which I probably won’t express because it won’t make any difference.
Ugh. Just, why? Why am I his only advocate, the only one who listens to him? This meltdown, today, didn’t have to happen. And I’m angry. For him.
Not really expecting an answer…..but thanks for listening. 🙂 I just needed to get it off my chest.
I’m sorry you are in that position! I’ve spent many a day huddled on the floor of a movie theater/shopping mall/front lawn of a birthday party… My heart goes out to you. I’m sorry his needs are falling on deaf ears around you. Stay strong – you’re doing what’s right for your boy.
Keep on keeping on Mom. I have found that it is hardest for those who don’t deal with it as much. My in-laws don’t have a clue as to how to deal, but after 5 years my mother-in-law will now ask questions.
Anyone with advice on getting a 5 yr old sensory seeker to use the potty? He is perfectly content to sit in a wet or dirty pull up, unless he is painting. He is not severly affected.. he was briefly trained last year and now, not so much. I was hoping he would be out of his pull ups for kindergarten, but I just don\’t know.
I would suggest a set of rules with rewards. (e.g. children who use the potty right get a Popsicle. Children who have no accidents get to pick a movie to watch after dinner. Children who go for a week without an accident get a new movie or game.) It’s hard to do without threats or breaking the rules for your own convenience, but it can be effective.
John Mark McDonald
Hi Jennifer-
My daughter is five, just about to enter kindergarten, and we have had our share of potty training struggles too! We finally got her trained just about a month ago (Bribery finally worked! “I can’t afford to buy you that princess dress so long as I still have to buy you diapers….”) but it was way more than bribery. While she was in preschool her OT stumbled upon something called the “potty watch” (you can google it, it costs about $12). It is simple – you set the timer, and it goes off every 30,60 or 90 minutes. It lights up and plays a song, then resets itself. It gave her a measure of control over being responsible for remembering to go instead of us nagging her all the time. It did keep her mostly dry during school (until she started getting bored with it after three or four months). But it did help her lay the groundwork, so to speak. She started to understand the concept of going potty regularly a little better. The other kids in her class seemed to think it was just a neat toy watch…. I’ve also noticed that if she is wearing pull ups, she is more likely to use them. Her OT thinks she likes the feel of the wet diaper along with the extra weight on her waist. Underwear doesn’t seem to provide that as much (I know it’s a laundry risk, but actually seems to be working so far). Good luck. I totally understand your frustration.
This is also helpful for me. I don’t know when to begin potty training for my 3 year old who is finally to take her pants down, but many times will not let us know when she has soiled diaper,etc. I will look into the potty watch.
I think the website was pottytimeinc.com, if that helps. We are talking about starting to potty train my almost three year old. She is nonverbal, deaf, low-tone, etc. (we have three kids on the spectrum) but she is starting to leave the room when it’s time for her to “go.” We’re going to start with the potty watch, and see what happens. Anyone with any advice on potty-training someone with no expressive language, feel free to give me some advice– It took me three years to potty train the last one and she could talk!
In light of the Joe Scarborough debacle, as Jess called it 🙂 – I wrote a song about my baby… about our babies. I wanted to share it and wasn’t sure where to do that so this seemed like the best place. As Jess said, spread respect, love, understanding… that’s the purpose of this post… I appreciate having such a great community to reach out to… Heres’ the lyrics… followed by a link to vimeo…
“As the mother of a child with Asperger’s (Dear Joe Scarborough)…”
The way I feel right now
I got a lot of things I can’t count on
When I’m looking at my baby and he’s nowhere to be found
And the world goes spinnin’
Round and round…
The way I feel right now
I see a lot of evil can’t be changed
I see a lot of egos can’t be tamed
I see me runnin toward my baby
And he’s runnin
The other way…
I know you’re scared
I know you’re angry
I know you just can’t face what you fear ’bout reality
I know some days seem too big to be carried…
And then my baby stares up at the sunlight shining
And says: “Mama, I see those angels dancing…”
He says: “Mama, do you see those angels dancing?”
And I see… the light of an exquisite mind.
The way I feel right now
I got a lot of wishes I can’t make go away
And I’m dreaming ’bout my baby
And a day when he’ll be “okay”…
And he’s sitting in that corner while the other children play…
And the world’s spinnin’ faster every day…
I know you’re scared
I know you’re angry
I know you just can’t face what you fear ’bout reality
I know some days seem just too big to be carried…
And then my baby’s blue eyes light up the winter sky
And he touches my face but looks out at the world go by
And he says: “Mama I see those snowflakes laughing.”
He says: “Mama I see those snowflakes laughing.”
And man I see those snowflakes…
Man I see those snowflakes!
And the way I feel right now
With the light of this exquisite mind lightin’ up my inside
That’s when I think that sometimes …
That’s when I think that sometimes…
Oh my baby I wish I was a little more like you…
Oh my baby, I’d like to be a little bit more like you…
As the Mother of a Child with Asperger’s (Dear Joe Scarborough)… from amanda moresco on Vimeo.
As a mom with an aspie daughter, I so agree “I wish I was a little more like you…”
Hi,
I am new to this blog and so excited to be a part of the forum. My 3 year old daughter was diagnosed over a year ago. Every day is a challenge and new beginning. My daughter is the love of my life and my husbands. Recently she has been going through extreme behavioral changes.
Pulling her shirt over her head
Leaning over the couch
Pulling her hair
Major fits
I do have help in addition to where she is in school full time (9-4) once a week in home by a psychologist. It is just so stressful and at times I feel overwhelmed.
If you have any good tips or ideas, it would be appreciated. I also have a facebook page Autism-bridge.
I am not giving up or put blame on my sweet daughter. I only want the best for her in life.
Jill
JIll, My first instinct is to ask if she might be having GI / tummy trouble. The list of behaviors that you mention – pulling her shirt off, pulling her hair, but especially the leaning over the couch lead me to the question. When my girl’s got a tummy ache, the first thing she seeks is pressure to relieve it. If your little one’s in pain and doesn’t have the means to communicate it to you, the behaviors you describe would make a lot of sense.
Hi Jess,
Is there a specialist I should go to for this? I will check with the psychologist as well to get her opinion. I have been learning how to use reinforcers (chips, crackers, ipad, ball toy, puzzles, bubbles,etc) and other strategies to help when her behavior is difficult.
Thanks for your help.
Jill
Yes, a pediatric gastroenterologist (GI specialist) – preferably one with experience with autism if possible.
And the reinforcers are one thing, but I find that it’s VERY important to figure out WHAT Brooke is communicating with her behavior before trying to alter it. If a child is in pain – whether from sensory over- or under- stimulation or GI distress or anxiety or myriad other factors, a cookie may change the way that they express that pain, but it doesn’t get any closer to alleviating it.
One of the most important things to learn about in order to understand anyone on the spectrum is sensory issues. People on the spectrum really experience the world differently because our senses are set at a different level than the average person. These may be extremely high or extremely low. I wrote an article here http://autismtothefourth.blogspot.com/2012/06/sensory-issues-in-autism.html in which I go into detail about sensory issues.
Also, at your daughter’s age, it is very difficult to tell a meltdown from a tantrum, but this is a very important difference. Meltdown are caused be becoming overloaded (either emotionally or by sensory overload) and become involuntary once started. Tantrums can be dealt with by rules and consequences, but meltdowns have to be dealt with by removing her from the things that are overloading her and getting her where she can recover. I would also suggest visiting some adult autism self-advocate sites, as I have found they have much better and more practical advice than sites of “autism experts” who have not lived through a lifetime with autism.
John Mark McDonald
Thanks John, I will look into your suggestions. It is appreciated to get any feedback, especially personal insight that you have experience with.
I’d love to find more resources and support for kiddos that are nonverbal. Our 4-yr son is nonverbal and has a Vantage Lite communication device. This year he has taken more ownership of this talker and able to make more requests. However, I know he has more to share and I’m trying to find more support for him but also our family including his brothers. Thanks.
John Mark McDonald, I always find your responses so very helpful and easy to understand. Thank you for contributing and helping out here. 🙂
Does anyone know good stories or social stories about gettInv braces? My 9 yo daughter with ASD is about to start that process and could use some stories to guide her.
oi, i have no advice but i’m waiting to see what is posted. my 10 year old will need braces soon and my gut knots up anytime i think about it.
Hi Jess and everyone!
I hate to bug you on a holiday weekend, but I could use a teensy favor. You know your friend at Luck to Tuck? I have a friend like that too. I mentioned her to you in a comment on Welcome to the Club when you were on your island getaway last winter. Anyway, her son has been fighting neuroblastoma for seven years. He is 11 now, and his little brother is good friends with my son. One thing that means SO much to her is the gold ribbon for Childhood Cancer Awareness month – which just so happens to be September. Since you have such a huge stage, of skilled autism mamas who are great at spreading awareness and advocating, I was hoping you might just give it a mention somehow. It would make a world of difference to these families- just to have another group of parents take up there cause, just a little.
Here’s a little something I wrote earlier today, for a little background – statistics, etc. I know you’re busy, but just thought it wouldn’t hurt too much to ask. Thanks.
http://threepuzzlepieces.wordpress.com/2012/09/02/light-it-up-gold/
Erin
Hi Erin,
Thank you for sharing this story about your friend. This is another topic near and dear to my family. A dear childhood friend lost her 4 year old daughter 2 years ago to neuroblastoma. I would be happy to help spread the news. Thank you for letting us know.
My husband is the manager of a restaurant where we live and this Thursday they are donating 10% of their proceeds from the ENTIRE DAY to St. Jude’s. I’m so proud of him for initiating this and seeing it through!
Blessings,
Kate (Mamabear99)
erin, thanks for sharing. i posted the link on twitter. no child should have to face that. xo
I was wondering if anyone else has their child on Risperdal? My daughter, who is 8, started displaying SIB of biting her hands, wrists, and arms when she got upset or frustrated. Our developmental pediatrician prescribed Risperdal .25ml once a day. The medicine has worked wonders for her and the biting has almost completely stopped; maybe one or two bites a day. But now I’m noticing that her chest has started to sprout, and she is developing breasts. Does anyone know if this is a side affect? I’ve googled and have looked at the paperwork the doctor gave me; but I don’t see anything about this. Thanks in advance for your questions or comments~Amber
Found this on from the FDA indicating that in some studies hyperprolactinemia is a side effect of risperidone (Risperdal). http://www.fda.gov/ohrms/dockets/ac/08/slides/2008-4399s1-04%20(Risperidone).pdf
Your daughter may have an excess of prolactin (same hormone that in high enough doses brings on lactation) activating breast growth/development while not actually bringing on puberty. I would discuss this possibility with your developmental pediatrician, they should be able to determine this with a blood test.
Hi there. Looking for good books to use as support in discussing autism/Aspergers with my 8 year old son. Thanks so much for any recommendations!
l agree with “All Cats have Aspergers”. Also, “What it is to be me: An Asperger Kid book.
We just recently told our 8 year old that he is autistic and has Aspergers. We spent time reading both of those books with him. He seemed to like both books.
Kate
“All cats have Aspergers” is a very good book
I am in need of some ideas on how to handle a sudden, drastic, downward spiral. My 5 yr old son (soon to be 6, just started Kindergarten, officially PDD-NOS, but really more like mild Asperger’s, ADHD, SPD) had been doing fairly well in recent weeks.
Suddenly, seemingly out of the blue two days ago it was like someone flipped a switch. Every tiny little thing is sending him into severe and immediate meltdown mode. He is suddenly perceiving slights where there are none and getting complete and totally out of control and is suddenly RIGHT on that very knife edge every minute of every day. It was so horrible yesterday morning that I didn’t think I could possibly send him to school and contemplated taking him to the hospital though I wasn’t sure what would happen if I did (so I didn’t).
Things as simple as me asking what he wants for breakfast, him not deciding, and his father, joking, saying something like “Why don’t you have a can of sardines!” (they had just watched Cloudy with a Chance of Meatballs, where sardines are all the people have to eat before the machine is invented and of course no one liked them)… sends him into uncontrollable fits and screaming “YOU HATE ME! YOU’RE MAKING FUN OF ME!” If he sees or hears someone laughing he thinks that somehow they are laughing at HIM even if they have not interacted with him at all and aren’t looking at him, and are clear across the playground etc. He suddenly thinks everything that anyone does is directly related to him personally.
This is a huge and drastic and sudden change and I can not find rhyme or reason for it.
He is on guanfacine, 1.5mg 2x daily. He takes fish oil and a daily vitamin. We occasionally use melatonin, but haven’t in a long while. He sees a play therapist, a music/ floor time therapist, is starting ABA Social Skills therapy tonight, is on a waiting list for ABA therapy, and spent 1.5 years in OT though we’re on a break from that right now due to insurance red tape and “lack of therapeutic progress” or something.
Have you ever experienced this? What do you do in this situation? Who do you call? Where do you start? I’m at a loss….
I am sorry you are having such a tough time, and yes, we have experienced this too. My older son goes through periods like this, often when something has happened at school- either someone has picked on him, or he has perceived that they have picked on him. It often takes a while to drag it out of him. The other times I have noticed it has been when he gets MSG (listed on ingredients lists as monosodium glutamate). It is in all those prepackaged snacks that kids love to take to school with them – doritos, cheese puffs, vegetable dips, etc. it took me a while to catch on to it, but wow, what a difference it makes in him. We’ve found that Red dye #40 also affects him, but in a different (also not good) way. Kids are often eating different things at school than they are during the summer. It could also be just settling into the big transition of the school schedule. Usually the first couple weeks are kind of a getting to know you period, and then the real work starts – this could be like a separate transition for him. Talk to the teacher, the lunch lady and any other “spies” you may have at school to see if anything is up. Then try to keep your routine at home as tame as you can. Take a deep breath and just try to keep your cool through the storms – they will pass. I can’t comment on the medication, as my kids don’t take any, but I would try to keep everything – meal times, bedtimes, any other family routines and vitamins, as consistent as possible during a transition like starting school. Keep your chin up.
Thanks, Erin. We’ve already eliminated most/all food coloring (he especially reacts to red and yellow), preservatives of most types, and really severely limit processed foods of all sorts and he gets no junk foods like chips etc. He packs his lunch most days, but has had a few school lunches, so you may be on to something there. I’ve not looked for MSG, but I will now, thanks.
I should probably also mention that he has started throwing himself on the floor, thrashing around insanely, playing helpless for no apparent reason, and yelling things like “I can’t stand up! I don’t have any hands!” and other really bizarre things… I have never, ever seen him act like this…
Mine do that too. The weird thing is (I have 3 on the spectrum ages 8, 5, and almost 3), it seems like when they hit age 5, everything just kind of blows up – becomes way more obvious. I have no idea why, but it did with my son, and it’s now happening with my 5 year old (kindergarten too!) daughter… I have learned to just stand back as much as possible (so long as they are safe). Whenever I engaged my son in that way, it would just amplify the meltdown. It is NOT easy. Often these “tantrums” go on for upwards of an hour. I try to get them to a quiet cooling off place, like their room, or the car if we’re out. It often involves me carrying them (autism is like a great gym sometimes.;) ). Don’t worry about what anyone else is thinking at that point. The more intense he gets, the more calm and matter of fact you need to be. Over time, you will help hime learn coping skills to calm himself. When the event is over, and you have had time to separate from the episode., talk to him about it. There is no point in trying when he is thrashing. It WILL get better. Right now it just feels like you are running a marathon at a sprinter’s pace, but it will get better. I equate it to an asthma attack – when I have one asthma attack, for the rest of the day, my lungs are a bit more sensitive, and smaller things will set off another attack. For my kids the meltdowns are the same way, so keep that in mind for after it happens too. I have even explained that to my son (after he calms). Him being aware of that seems to help him.
Thank you, Erin… I so needed to hear that right now…. I was beginning to fear he was having some sort of psychotic break or something. I will attack it with calm and persistence and we will see how it goes. Thank you again!
Anytime. We’re all right here, anytime you need us. {{Hugs}}
Oh gosh, I remember worrying that my little guy was having a psychotic break in Kindergarten too. For my little guy it was anxiety that was driving the crazy thinking. The school behaviorist working with him an hour a week, and a very gentle treatment from the teacher worked wonders.
Thanks, Kinder, that’s good to hear!
Can anyone suggest ideas for how I can prepare for my daughters IEP meeting? She will be 4 yes old end of December and about to change from a private Aba therapy full time program the I loved and saved her life.
She is transferring schools in two weeks where she will go to a public charter school for autistic kids.
This is all new to me and would appreciate any advice. I know in time through experience things will get easier, atleast I hope.
The IEP meeting is supposed to be 3 weeks from when she starts October 1.
Thanks for the support!
Feedback is appreciated.
I actually don’t have a lot of experience with IEPs since my older two go to private school, but we just had our first IEP for my youngest yesterday. It would probably be helpful if you could talk to her team at her former school. Perhaps they may have some ideas of goals for you. Also, old treatment plans and evealuations might be helpful. One thing that we put into ours was an observation period for the PT and OT at the school to watch my daughter and evaluate her over 30 days and then come up with a treatment plan and goals that will be added into her IEP. We are sending our daughter to an approved private school, so they are very good at writing IEPs that protect the kids. My assumption is that if she is going to a specialized school, they may be less adversarial than a “mainstream” school, but that’s just a guess. Go in with your ideas. Listen to theirs. Then take the draft home and look it over before you sign it. Make sure the goals are not too vague. I’m pretty sure you can bring whoever you want as well, so it might be helpful to bring some of her current teachers or therapists if you can. (I brought three with me.) At least bring one other person you trust for moral support, if nothing else. Look through the comments here too, I think there has been some good (way better than mine!) advice given in the past on this. Good luck!!
Hi there. The best advice I’ve ever gotten from an advocate friend of mine is to be nice and never say what you “want’ for your child. Never say, what I want for my child is… – Politely say: what my child needs is blank – how can you provide this to her/him? – sometimes language makes all the difference. Also, it empowered me to realize that I am not asking for favors for them to help me – they are required to provide the help my child needs and me “advocating” for him – literally means I am speaking for him. Not asking for favors.
Of course, this requires that you know what it is your child needs at this point, going into this new school and that can sometimes be the most scary thing. Hopefully you have at least an idea of some supports that help her already, some supports you would like to try and if not, then I would go with what they suggest and if you don’t see any progress or if anything they’re suggesting is detrimental – then you have the right to request another meeting at any time during the year to reevaluate.
I remember my first iep – i was terrified, it was very scary and the people on the other side of the table knew how new I was to the whole process and quite honestly, counted on me to not make waves, to not ask questions…
Hopefully you have/will have a great team and they really will be doing everything they can for your child – but if you don’t understand something they’re saying, an acronym they’re using – anything at all – it is your right to understand them. And not be intimidated.
It’s a great thing to ask questions – if the team is annoyed by your asking or you get the feeling in any way at all that they are burdened by what you’re asking for – then that’s a great red flag and you know you need to keep your eyes open and might possibly have to look into getting an advocate on your side.
I sincerely hope it doesn’t come to that for you – It’s just good to know that there are options out there should you need them.
I hope it goes well!
“One thing that we put into ours was an observation period for the PT and OT at the school to watch my daughter and evaluate her over 30 days and then come up with a treatment plan and goals that will be added into her IEP”
Wow, great advice – especially if this is a totally new environment for her and you’re not really sure how she’s going to respond.
Thank you for the response. I feel like there is so much to know, but with communication and the appropriate support I will feel in contol of getting what my daughter needs. I will keep what you suggested in mind.
Thanks so much for the support. I will continue to share my concerns.
Bring snacks! The team at your school are working hard. These meetings tend to be emotional and difficult and they have numerous meetings to attend, though you are only there for one. We always bring coffee and pastries to show appreciation for the team working with our child and because it improves everyone’s mood.
That is a great idea, I will bring some goodies and treats. Everyone usually likes sweets!
Thank you. That is a great idea, I will bring some goodies and treats. Everyone usually likes sweets!
Hey! My friend just had her daughter re-evaluated. Her DD is middle-school, on autism spectrum and ADHD. She is feeling lost because so many bloggers have boys or younger girls. Anyone have a similar situation To hers? Also, any recs for literature for a mom with a daughter on the spectrum??
I have younger boys but I do read this blog. Maybe she can check here. I don’t know if that will help her. http://emmashopebook.com/
Great advice, I will try to be assertive at these meetings. It all seems so overwhelming. I am an advocate and will do what is possible for my daughter. Thank you 🙂
Today was such a great day, but also at very stressful. My daughter who I adore, many times for attention will take off her clothes, lean over the couch or even bend back on the booster.
What are some proactive suggestions?
I was recently trained with a psychologist, but any support and feedback that has worked is appreciated.
Thanks so much
Jill
Please be careful before you decide that her behavior is attention seeking. Many behaviors that seem like attention seeking in people on the spectrum are actually reactions to sensory issues or emotional overload. I have both a boy and a girl on the spectrum and have Asperger’s myself. I cannot tell you the number of times I or my children were accused of attention seeking when actually is was sensory issues or emotional overload. On the other hand, like any child, your daughter will do things to get your attention.
What caught my attention was your mention of of her specific behaviors. Autistic children who take off their clothes is a classic indication of over sensitivity to touch. My 13 year old son to this day prefers to wear his shirts inside out because the feeling of the seems and tags are a constant source of irritation to him. The bending over a couch or the booster chair may a need for stimulation of the sense of balance or deep muscle pressure. I wrote an article on sensory issues that can be found here:
http://autismtothefourth.blogspot.com/2012/06/sensory-issues-in-autism.html
Without knowing more about the situation, I really can’t say more. I am available anytime to talk about this or any other autism issue.
John Mark McDonald
Scintor@aol.com
Tonight was very upsetting and stressful. My autistic daughter who is almost 4, is truly the love of my life. However, even with unconditional love a mom can have her moments of inner meltdowns. When Zoey starts doing things to act out like very wild at the dinner table, or running to couch where she will lean over, I know it’s either for attention or very overtired.
What happened that upset me was after her bath, Zoey was determined to bring the mini trampoline downstairs. Well, I have to walk or carry her down stairs since she is not able to on her own. She wanted the trampoline down at that moment. I took her down stair and than planned to bring the trampoline down once I got Zoey safely in the living room. The next things I feel for the first time was my hair being pulled by Zoey while she giggled and thought this was funny. As I tried to pull her hands off my hair, I began to raise my voice which only pushed her to pull my hair more. My husband luckily was home and able to assist.
In addition, after I was more calm and felt bad that the situation got so escalated, I went over to my daughter for a hug and kiss. I felt bad as being autistic and I know 3 yr old children do these things, it was still hard to handle. My daughter also bit me on the leg before taking her up to bed. It seemed like her behavior was just getting worse from being tired.
If anyone has had this situation occur as I am sure it is not so uncommon, please suggest some proactive strategies. The most important action I will need to do, will be to stay as calm as I can and know this is not my daughters fault. “Calgon take me away.” (If you remember those commercials where the mom is in the bathtub)
All I can tell you is, it happens. Kids get tired, mamas get tired. We all raise our voices at some point. My kids do that too. It is frustrating. It is so hard to calm yourself at the same time as your child is escalating. I keep my hair pulled up at all times, to avoid the hair pulling. I don’t wear jewelry. It helps. But it happens to all of us. She will be ok. You will both be ok. Get some sleep. It will really feel better in the morning. Really. It will. Don’t beat yourself up. Hugs.
Thanks, you are right.
I will take it easy and probably need a good night sleep. I usually put my hair up in a pony tail.
My autistic son just told me this morning that one kid punches him in the stomach everyday at school. Should I get the teachers and admin, etc., involved or wait and see? Shoot! I’m so sad and mad. Why does my sweet, sweet boy have to go to school every day knowing he’s getting punched by a schoolmate? Ugh!!
Get them involved. NOW. NO child should be hurt at school.
E-mailed! 🙂
I have three boys – my 7 and 5 year old are on the spectrum, my 2 year old is not. While our community has some great resources, our public schools are terrible at educating children with special needs, and private school for two is slowly bankrupting us (and not always giving the kids the access to the typical peers they need). My husband and I would like to move to another community (really anywhere in the US) that has great public schools and other therapeutic, social, and play opportunities. We have begun thinking about the Greater Boston area but are wide open to any other thoughts anyone might have. Thanks in advance for your help!
PA is great for funding services (despite what is currently going on – see comment below). With a diagnosis, regardless of income, children qualify for Medicaid and are eligible for wraparound services (at no cost unless our current governor gets his way) – behavioral aids come to school and home with your child, as prescribed. Also, housing is much cheaper here. I grew up in Boston, but I live here now for the services that my kids get. Good luck!
anyone from PA know about the insanity that is the new copay system being started in Nov?
Hi Jodi-
Go to pennautism.org. Basically it’s a big mess right now, but there was a House Resolution just this morning to try to at least postpone implementation until the finance committee can look into it. Governor Corbett has decided to go it alone on this and somehow managed to get sweeping authority to do so. Contact your legislators. Tell them to support HR 879. I’ve also started a petition that you can add your name to, and please pass it on to anyone else who might be willing to sign. We can stop this, but we all have to work together.
For those who don’t know about this, the Governor is essentially implementing a tax on disabled children in PA. The services that are currently covered will be subject to copays, up to 5% of a family’s gross income. Families were notified this week. A bulletin was announced August 10, but quietly, so only a few of us knew about it. Few members of ghe general public are even aware of it right now. And it is set to take effect on Monday for newly diagnosed families, November 1 for families already in the system. It will certainly mean that parents will be forced to cut many prescribed and medically necessary therapies and treatments in order to provide food and shelter for the rest of their family. If this goes into effect, it will be disastrous for many families. Please sign the petition at the link below.
http://www.change.org/petitions/the-governor-of-pa-do-not-implement-copays-on-services-for-disabled-children
thanks for the info. i know a lot of families who are very anxious about this legislation. it’s not so much the idea of having to contribute to the cost of care but the complete chaos and disorganization of it is awful.
I completely agree. i’m not necessarily opposed to contributing, but the way it’s being handled is cruel, unorganized, specifically targets autistic children, and they are being extremely vague about how it will be implemented. The reality is, if they would simply enforce the Act 62 Insurance laws already on the books by forcing insurance companies to cover autism services, they would save significantly more money, and actually help families. Just keep yourself informed – it seems things are changing by the minute on this…
Hi Jodi-
Just wanted to update you, in case you hadn’t heard: the copayment idea has been shelved. It was announced today after a massive joint effort by the advocates and families of disabled children in PA. A huge victory for our community, won today because we all worked together for our children. We will continue to keep an eye on the situation, but for now – huge sigh of relief. 🙂 Happy Friday to you!
Posting from Canada but needed to get this story out to “my community” for added support and to share this BEAUTIFUL song written for Noah Jacobsen. I think it speaks volumes to many of us on this journey. Noah tragically lost his father and proceeds from this song will go to fund Noah’s continued therapies and support. Listen to the lyrics and send your positive thoughts and support to this family. Our family.
http://dearrouge.bandcamp.com/
PS: I have never met and do not know this family personally but read the story in a local newspaper and wanted to pass it along to others.
Yours was the first blog I was directed to after our son was diagnosed with autism just this week. A new world is upon me and I decided to start my own blog for him. It’s called Jacob’s Voice on blogger. I’m new to this so I have no idea how to reach out and become a part of this community so I decided to start with you since you seem to be on of the cornerstones. Please feel free to offer any suggestions or help you see fit. Thank you – Dan
Dan,
Welcome! I’d invite you to read the following two posts, Welcome to the Club ..
https://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/
And D Day …
https://adiaryofamom.wordpress.com/2012/03/28/d-day/
both of which I often share with parents of newly diagnosed kids. I’d also suggest scrolling through my blog roll where you will find other dads who write, a bunch of moms, and most importantly, links to autistic perspectives.
If you’d like to join us on the Facebook page, there are some lively conversations there as well. You can check out the pages that I like from there – Thautcast, ASAN, Autism Speaks — lots of different perspectives.
But as it says in Welcome to the Club, don’t feel like you have to do it all at once. It’s a lot and it can be confusing and overwhelming. The information and the conversations aren’t going anywhere. Take your time and jump in as you’re ready. We all look forward to having you. 😉
Jess
thanks. i had heard about that and i’m curious about the proposed idea of a premium. at least for the time being, people can continue to have services for their kids
I am really struggling with what to do for my son for kindergarten. My 4 1/2 year old son was diagnosed with autism two years ago. He has been in early intervention (speech, OT, PT, music, ABA) ever since. He has also been attending a developmental preschool since he turned 3. The school district wants to send him to their autism program, and pull him out for some subjects. He has been reading, writing and spelling since he was 3. He is also doing some math. My concern is that he will stay in the autism classroom most of the day, and will not get enough academics. Or will not gain the social skills of typical peers.
We could also send him to a private Montessori school. M’s OT and BCBA therapists have recommended Montessori schools. But his pediatrician and his developmental psychologist have both said Montessori schools foster too much independence, which M has “enough of” and that he “needs to learn socialization” which the schools do not work on.
So, mainstreaming is the third option. But, I worry that it will be overwhelming for him. Even with an aide.
Any advice would be so appreciated. Thanks so much.
wow, that is so complicated. i struggle with keeping a balance between academics and socialization, also. what i’ve done is just gone with what he needs today. if he’s lacking more in social skills than academics, i kept him in mainstream. once his academics started to suffer (too much visual stimulation, noise, and intolerance in mainstream class to concentrate), i moved him to a situation where learning was easier. this isn’t a month by month change, as that would be upsetting for him. i had to concern myself with the fact that this journey will take decades and all i can do is make the best decision for him right now. for today.
in your mother’s gut, maybe you have an inclination as to what he needs, to say maybe your heart is already leaning toward one option. if so, i’d suggest taking that route. two different sources are giving you information. two sources with different goals. look at the motives of the source (the school districts vs the therapists). which one is truly trying to give the best life to your child? and if you can honestly say that they both are, then i really feel like either way you move will be okay. they both have their data backing their suggestions. neither way will be detrimental, i’m sure.
good luck with your situation. i hope you find confidence in your decision. 🙂
Thank you Luna, for your advice. I think that you are right, and we will just have to explore all the options sinc I keep going back and forth. We are touring schools on Monday and I hope to have a better picture. 🙂 and, like you said no decision is final.
We are having some difficulties with my 3 yr old (4 end of December)
We recently moved for a trial relocation where my daughter is in a new public charter school for autism. Yesterday something amazing happened, my daughter said “stay daddy”, she had never said this. There was also very intesive fits where she tried biting her arm, pulled another childs hair and screamed wanting her way. I am in the process of getting addition behavioral therapists to help me and her. In addition, I am so concerned this will get worse and maybe looking into medicine to help. I prefer not to, but might be necessary as she was doing this before our move. If anyone can make a suggestion as I am trying to be strong and keep it together. It’s also hard as I lost my mother to cancer Feb 2011 and wish I could get the right support.
I wish I had some advice, but I do not. I understand your dilemma regarding medication. I’m also not a fan of it, but when they’re hurting other people it gets so very complicated. Are you located near any support resources? Nothing can replace a parent, of course, but having people around you who get it is so important.
Jill- I am sorry you are going through this. Would it be possible to cut back on your daughter’s schedule? Perhaps a half day if she is in full day classes, or less days per week? My three year old had some pretty serious regressions when we had increased her therapy time. When we cut back a little, and maintained focus on just a few areas where she was doing well (as opposed to working her too hard on things she wasn’t having success at) we saw overall improvements everywhere. I see that you said she was doing this before your move, but perhaps something new is contributing to it now? {{Hugs}}
I am not sure if I am posting this for advice or just for the community support. Perhaps a little of both. I have two Aspie daughters; the older of the girls is fifteen, but only in 8th grade. We have been moving steadily along, since her diagnosis several months ago. (Why it took us so long to put the pieces together is another story entirely.) What matters is that we finally knew the root cause of all the different issues, and we were working together as a family, partnered with the school and therapists, to help her make positive changes. She struggles desperately with anxiety, and she actually has a dual-diagnosis of Asperger’s with General Anxiety Disorder. But, for the most part, she tries to be a typical kid, and she wants to do typical-kid activities. So, she went to her Homecoming dance Friday night…not with a date, of course. That would be far outside of her comfort zone. She went hoping to hang out with friends, but none of them showed up. So, she mostly hung out with her younger brother and his girlfriend. Unfortuantely, she was targeted by an aggressive young man who verbally and physically assualted her on three separate occasions. She was very frightened, and she asked an adult to help after the first attack. But, they did nothing. She did tell her brother, but while his back was turned, the second attack occurred. The third time, her brother was watching and waiting. Although he is three years younger than his sister, and has the soul of Winnie the Pooh, he stepped in front of his sister and protected her. He had to physically defend her. Again, no adult did anything until my son demanded help. By then, I was on my way to the school, and I arrived to the scene of disaster. All of this occurred during a very short span of time. Unfortunately, there were no school authorities at the dance, only parents. The attacker was basically free to do as he pleased, and he remained at the dance. OF COURSE, we are dealing with this officially first thing this morning, both with the school and with the police. However, the damage has been done. My daughter was already struggling with the temptation to cut. We had managed to hold it at bay by replacing the urges with expressing her feelings in art. But, this was too much. Friday night was a triggering event, and she confessed yesterday that she really cut herself this time. I was already numb and in shock from Friday night, and it really didn’t hit me until last night. Suddenly, a wave of grief and rage rolled over me like a freight train. I could hardly breathe, I was sobbing so hard. I am not looking forward to this day. I feel physically sick. There is really nothing any of you can do. I know the things we need to do, legally and emotionally. But, I guess I just need the support of the community, to know that I am not alone in my grief and rage. I feel powerless. I can do something about the enemy attacking my daughter from the outside. I can do very little about the enemy attacking her from the inside. It is the most frightened I have ever been as a parent. I will try to post updates and results later. Thanks for listening.
That’s terrible. I had a child in my care that cut herself when she was a teen. We set up counselors, etc, but it’s so very difficult to reach them. It’s not something you can fix with some medicine and a band-aid. Frightening is a good word for that situation. I hope you manage to keep her moving toward artistic expression.
Before I say anything, I want to let you know where I am coming from. I am a middle aged man with Asperger’s who has two children on the spectrum.
Where to begin as there are so many overlapping issues here. OK, we’ll start with self care.
DO NOT BLAME YOURSELF! You did nothing wrong here. You sent your daughter to a place that should have been safe because it was monitored with friends and familiar people. It was other people not doing what they should have that caused this. Your daughter is probably not the only one who is internalizing their emotions in a hurtful way. Life is unpredictable, and torturing yourself with “if only’s” will only make things worse. Forgive yourself for not being all knowing and leave the past behind so that you can make the future better.
OK next is your daughter.
Your going to have to trust on this one because it will never make sense emotionally. Cutting in this case is an extreme form of stimming and like all forms of self-injurious stimming is terrifying to those who watch those in their care doing so. Stimming is a NORMAL human response to being overwhelmed by emotions or sensations. Because people on the spectrum are more sensitive to them than neuro-typical people, we get overwhelmed more easily. The situation that your daughter would overwhelm ANY teenage girl.
Now the best thing to realize here, is that the stimm is not the problem, but a symptom. Does that mean we leave it alone as some advocate? No, but we should try to never punish or demonize it. Stimming in response to being overwhelmed is normal and many times unavoidable, but the way we stimm can be shaped with practice, You are already on the right path with providing alternate outlets for her energy.
The first step is understanding in a way that she feels accepted, and this is where it gets even more complicated. Stimming is only semi-voluntary, like breathing. If you think about it, you can control the rhythm and timing of your breathing, but as soon as you stop paying attention, it does it on its own. Her cutting was not an isolated act of self injury, but part of the entire episode that was still going on inside her. She knows that she is supposed to cut and probably feels guilty that she was not “strong enough” to keep from doing so and feels like she has let you down.
The best thing I can recommend here is to let her know how overwhelmed, scared, angry, sad and disappointed she is at how the prom went. Don’t even mention the cutting, but deal with what caused it. She knows that she isn’t supposed to cut and doesn’t want to do it, if for no other reason than she doesn’t want to disappoint you. She was not trying to hurt herself; she was just trying to deal with that much overwhelming emotion. Let her know that she is loved and valued and that she didn’t do anything wrong that night. If she brings up the cutting, the best thing to say is something like, “I know that what happened would be too much for anyone to deal with, but you’re going to make it because I am right here with you.” Dealing with the possibility of her cutting again is something for a later time when her wounds are not so fresh.
(continued)
As for your son; he needs to be praised for being enough of a man to stand up for her against her aggressor and the indifferent adults that were supposed to be taking care of things. He deserves a lot of credit and hopefully it won’t go to his head.
OK next for the people who were running the prom. This is the sort of thing where you need to demand a written apology from the people in charge of the dance. If it was the school, it needs to come from the principal and the staff and/or teacher that organized it. If it was the PTA, then it needs to come from the president and the person in charge of the event. The point of this is to is to make them realize the magnitude of the problem and motivate them to make the changes necessary to keep it from happening again instead of just quietly sweeping it under the rug. It also needs to be brought up at the next meeting of the people in charge (i.e. PTA meeting or School board meeting.) Don’t do so alone. Take with you the most opinionated, in your face person that never backs down from anything person that loves your daughter. If this is you, bring you most vocal supportive friends, but DO NOT bring your daughter. Boards tend to attract social bullies who will use social tricks to put pressure on her to accept the easiest solution for them rather than what is right. Going after the actual individuals at the prom will probably not be effective and may in fact cause them to “circle the wagons” rather than deal with the problem.
(cont.)
Last for the perpetrator. Whether or not you press charges is up to you, but GET A RESTRAINING ORDER! Make sure it is a no contact, no intermediaries, no nonsense restraining order with teeth. Make sure the judge is aware that you daughter is part of a federally protected, especially vulnerable disabled group. It is so easy for teenagers to ignore the rules and just do what he likes and what impresses his friends and he gets away with it because of the “don’t involve the adults” unwritten rule that teenagers have. This is very important because it will be the only protection she has at school when you are not there. A clear judges order cuts through all the normal levels of social expectations that protect a perpetrator from the consequences of his actions.
John Mark McDonald
Scintor@aol.com
P.S. I am available to discuss this anytime by e-mail or phone. I can also help with the cutting issue when the time comes.
I need help. I have 7-year-old triplet boys-two are neurotypical and one Asperger’s with other associated issues. The boys asked me about “curing” Autism. My husband and I have explained, to the best of our abilities, that Autism isn’t something you cure, it’s sort of someone you are. Anyone ever have that situation with siblings? What have you done? I have already put in a call to an autism group.
It’s such a tough position. My oldest is 10 and HFA. My two younger children are NT. My 8 year old asked the same question. I explained that he was born with an autistic brain. That everyone had different color hair, skin, eyes, etc. That brains can be different, too, we just can’t see it immediately. There are funny brains, brilliant brains, anxious brains, mechanically-inclined brains, artistic brains and autistic brains. I told her that I realized that some of the accommodations we make for him are frustrating. I asked her if her brother ever got frustrated with her, to which she said yes. I told her that we’re all very different personalities and that I wouldn’t try and ‘fix’ her because she was frustrating, and that our differences are important. Not always easy, but so very important. I told her that if there was a cure, I’m not sure I’d give it to him. He was created how he is and just because he’s different from me doesn’t make him wrong. And that doesn’t change no matter how many people he’s different from. I told her that if he wanted a medicine that would make certain tasks easier, then I’d help him. But never fix him. Because he’s not broken.
Your explanation would be different if you believe HFA and Asperger Syndrome needs to be cured, of course. My explanation would have been drastically different if my son’s autism was severe, if he harmed himself or others physically, etc. But for now, for her age, for our situation, i felt like the above was enough. It’s an ongoing conversation and it probably always will be. It’s tough for siblings. I’ve read that multiples have a very different sort of burden then non-multiple siblings, in that they feel that it could have been them, and then there is a sort of survivor guilt.
Good Luck 🙂
Thanks, Luna! We’ve essentially used the same words you have, and I, like you, would probably not give Bobby anything to “fix” him because I LOVE the person he is. I am currently working to get them into a support group. I didn’t realize (stupidly) how much autism affects them.
Hello, People of Diary of Mom! I have a question regarding summer time. Our son is turning four and is in a five day a week autism support preschool class. Obviously it will not go through the summer. We are in a huge quandry about summer. Both my husband and I work. He is at the age where he is too young for the autism camps. He is “high functioning” but I am terrified about sending him to a summer camp or daycare program. We live in Pennsylvania. Any ideas?
THAT is a super tough one. I wish I had a suggestion or two, but i don’t. I live in southern Louisiana and the summer daycare programs wouldn’t take my son b/c of his autism. he’s high-functioning also, but the spot on the spectrum was a moot point. they wouldn’t take him. i tried a couple of places that sat from their homes, but leaving him with people i didn’t know when he was not able to adequately tell me how he was being treated proved too much for me. i ended up quitting my job and staying home. i’m not the stay-at-home type. it’s been hard. we’ve had to make some serious financial sacrifices. but the reward is well worth it, as my children have had the best payoff and my son, in particular, is flourishing. no regrets here, but it is a sacrifice.
you’ve got some tough choices to make. i hope you find a solution that fits for everyone, one that gives you peace of mind. Good Luck!!
Have you requested Extended School Year in his IEP? In our district teachers provide a “regression statement,” recommending ESY for kids who they fear would regress during summer. Might be worth talking to your CPSE/CSE chair.
Do you have an advocate? I’m in PA too (near Pittsburgh) and my son is high-functioning but still needed wrap around services and part of those services was an appointed advocate to help with a variety of things. The past 2 summers, my advocate had a very extensive list of possible programs for my son. I work part time on weekends so haven’t needed a lot of extra care but he did a summer camp program at the museum and they were very understanding and willing to work with him. You might also try to contact The Children’s Institute. Even if you aren’t near Pittsburgh, they might have some recommendations that might be local to you. Good luck and I hope you can find something.
My daughter is 10 yrs old and has been diagnosed with Asperger’s and anxiety. She is currently on sertraline for the anxiety. We are having problems lately that I can’t make sense of, so I am coming to all of you.
The first problem occurred a few weeks ago. My daughter was playing a game that she made up, while on the playground at school. She has named the game “Crazy Bailey”. I believe she calls it that b/c she is acting crazy while she chases other kids. The problem is, the other children aren’t actually playing with her, they are running away from her. On this particular day, she got into trouble b/c she was hitting kids on the butt. We had talks about inappropriate touching and keeping our hands to ourselves. I also explained to her that she needed to find a new game to play. Then, last Tuesday, I got a call from the school. She was playing the game again and this time she grabbed a boy’s crotch. She got written up and sent to the principal’s office. She was told not to play the game again, but by the end of the day she was playing it again.
Her focus is all but gone and there is a lot of repeating happening, in order to get her to stay on task. She also stutters and has speech therapy at school, and the stuttering is getting worse lately. I ran into her speech therapist the other day and she said that Bailey says she doesn’t care that she stutters. I know that this will make it much more difficult to correct the problem.
Her emotions are off the charts lately and she seems to be having a hard time expressing her frustration and anger. Then the stuttering really kicks in and then she just gets angry and shuts down.
I don’t understand why things are suddenly getting worse. Any help or advice would be greatly appreciated.
Hi Chelsea-
I have an 8 year old boy with Aspergers (and two younger girls on the spectrum as well). I can’t speak to the medication, as we haven’t tried that yet. I have noticed that every year from about Halloween to February, he really starts to “lose” it. His behaviors get a little more… well, exciting. 😉 I don’t know if it’s the shorter days, colder weather, or the excitement of multiple holidays crashing together. He gets totally wild, his sensory needs climb, and the tantrumming increases. It always feels a bit like he is spiralling out of control. My only advice is to try to keep things at home as calm and as close to a regualr routine as possible. Just keep on reminding her about what is expected. Excercise seems to help too. I just bundle everyone up and take him somewhere that he can run, or have him haul firewood, etc. Physically wearing him out helps a lot. And take deep breaths, mom.
You might want add in a reward system – we started a behavior bead jar in our house. For good behavior, we toss in a few beads (a completely arbitrary number, so he doesn’t control the situation by demanding a set number). We do this for each of our children in the same jar, so they work as a team, but if you have just one child, obviously you would just do the jar for her. If they misbehave they lose beads. The goal is to fill the jar. When they do they get a previously agreed upon reward (for us it’s a make your own ice cream sundae party). The key is to keep it consistent, and to try any behavior plan for at least two weeks before ditching it. It has added a consistent, visual mode of encouragement for my kids. It might help your daughter – she may not care if she stutters, but if she gets beads for not stuttering, or for playing an appropriate game with her friends, she might be a little more encouraged.
It is REALLY hard for my kids to stay on track this time of year. All you can really do is try to keep some level of calm in your own home and try to stay as consistent as possible. Maybe even cut back on (this may seem nuts to some people in my neighborhood), or at least tone down the decorations for the holidays. This has helped my kids. Just keep it simple Only four months til spring….. 😉 Hang in there.
I have a 10 year old son with Asperger’s and anxiety. We’re not to the point of needing meds yet, but I’ve read that puberty for children with Asperger’s is incredibly difficult with elevated levels of depression. So I’m sure we’ll need something to curb the anxiety. I agree with the other commenter, that this time of year is especially difficult for our kids.
But, I’d like to add that at the age of 10, hormones can be starting to surge. My son has become “touchy” with private parts b/c he’s genuinely curious and doesn’t know how to handle it. My son has trouble knowing what is appropriate and inappropriate. He pushes boundaries where other children might not. He sees his friends “liking” girls and the girls “liking” them in return. I’m sure his anxiety is playing on this and i’m sure it’s confusing and frustrating for him.
Maybe she’s chasing them to get their attention, maybe she’s more interested in their attention now b/c of hormonal changes? Maybe she’s just being curious. I’m just making a random guess based on the game she’s playing and the inappropriate touching. Whatever the issue is, I hope you figure it out soon and that the both of you can find a resolution. Good Luck! 🙂
Well, here is a bundle of things that seem to have happened all at once, but have probably been building for a while.
First, where I’m coming from. I’m a middle aged man with Asperger’s syndrome and I have two children (one boy and one girl) on the spectrum as well. My little girl is 11 an suffers from anxiety disorder as well.
From my own experience, the “Crazy Bailey” game sounds like protective identification to me. When you are on the spectrum, you know that you are different and that it cannot be changed. I embraced that difference and made it part of my identity. Further, I adapted a “crazy” persona that was even odder than I was in order to protect myself. That way, if someone was attacking me for being crazy or strange, they were attacking my persona instead of my core self. The chasing and scaring her peers seems like her going on the offensive so that she doesn’t have to wait to be attacked, but I will say more on that later.
Her age is a critical factor for girls with Asperger’s syndrome. She should be starting puberty, and this adds hormones to an already confusing and overwhelming situation. Many of the comorbid psychological problems that come with Asperger’s syndrome get worse with the onset of puberty. I know mine did, as well as many others who have shared their stories with me.
Finally I will get to the hard part. The chasing with the inappropriate touching really concerns me. With what little you have told me here, I have no doubt that she has been harassed by her peers, and she probably hasn’t told you about it. Unfortunately, this is par for the course for a child with Asperger’s syndrome. Even more unfortunately, sexual harassment by peers or adults for girls on the spectrum is more common than not. Predators deliberately target quiet isolated children, which results in AS children (both boys and girls) having a tragically high rate of victimization. The part where you explained about inappropriate touching and then her behavior escalated is especially troubling. Children on the spectrum learn early on that there are two types of rules: Those that people say and those that people do, and only the second type count. If you tell her that that type of touching is wrong and someone else is touching her or has touched her that way, then words are worthless. Now, there is a possibility that I am wrong and this is just her way of exploring her curiosity due to hormones, but the other possibility cannot be dismissed lightly.
Last of all, what to do about things. Asking her directly will probably not get you very far. Kids at that age have a very well demonstrated rule that you don’t bring adults into kids problems. If there is a predator involved, it’s even worse. as they use a combination of threats, blaming the victim and emotional abuse to enforce silence. Taking away her protective persona of “Crazy Bailey” will only serve to make things worse. I actually think that “Crazy Bailey” is, paradoxically, the key! Ask her to tell, write or draw stories about “Crazy Bailey’s” life (possibly through a counselor, if you can find one who is used to working with Asperger’s syndrome children.) Ask her to tell general stories and stay away from leading questions and do not react negatively to anything that happens in the stories. Once she gets used to story telling and establishes that it is safe to tell you about negative things, then hidden things will come out on their own.
John Mark McDonald
Scintor@aol.com
P.S. Please feel free to contact me directly about this or any other matter.
My son is younger and I have not had any experience with this particular problem. But I do have personal experience with taking new medications. Aggressive behavior and mood swings are common side effects of many drugs. I recommend contacting the prescribing physician. In my personal experience the first medication is rarely the one that you actually end up using long-term when dealing with depression, OCD or anxiety. The dosage might need to be adjusted or the doctor might want to try your daughter on something else entirely. But definitely contact the doctor.
so, i have a 7 yr old boy with asperger’s. we’re thinking that it might be time to sit down and talk to him about his diagnosis. it’s never come up before. any suggestions for how to do it?
Hi Jodi-
First, let me say I think it’s great for you to tell him. It will help him understand so much more about himself in the long run. I told my son when he was five, about two weeks after his diagnosis (Aspergers). I made it “not a big deal.” We were in the car, my husband was at work, and I mentioned to him about the doctor we had seen, and did he know why we went there? I explained to him that his brain works in a special way. He has something called autism. It is part of what helps him analyze things the way he does – part of why he is so smart. But it also makes some things more difficult for him – like understanding the difference between his friend laughing during a game of chase and crying. But that it was the special way his brain works. It makes him special and smart, and that anything that seemed hard, we would just practice until it wasn’t so hard anymore. I let him process just that much – which he did with a smile on his face. We came back to it in short conversations here and there. He is 8 now. He understood it when I first told him, but he totally “gets” it now. His two youngers sisters are on the spectrum. And today, I made the mistake of hitting three different “technology” stores with them. Best Buy, GameStop and the Apple store. Then I was left to explain to them what sensory overload was – why we had to leave and how I understood exactly why they both started crying in those stores. My 5 year old daughter has pdd-nos. She doesn’t grasp the autism concept as easily as my son did. We talk about it frequently, but I think tonight was one of the first times she really understood it. I explained that they all have autism, which is a word that describes their superpowers. They perceive things so much more clearly than everyone else – “you can hear a conversation on the other side of the room, you see can see all the parts of the picture instead of just the whole thing, you can smell everyon’s perfume and the food cooking and the electronics.” But that sometimes superpowers can be a problem – I’ll bet Superman had to be careful when he hugged him mom that he didn’t squeeze her too tight. We just have to learn to control our powers so they don’t overwhelm us. I let them process that for a bit and then we talked about something else. For some reason, we have our best conversations in the car – maybe because I have my back to them while we are talking. Not sure.
I guess my point is, don’t act like you’re dropping a bomb on him. Don’t cry. Don’t make it a big deal. If he sees it’s not such a big deal to you, then it won’t be to him. He’ll ask more questions when he has processed the small bites you give him now. It doesn’t have to be an all at once power point presentation. And breathe deep. You are doing a very good thing. Good luck!
there are many many books available that deal with this, easily searchable at Amazon. most people i’ve read about use books. the book would start the conversation. i decided to tell my son when he was 8 (he’s now 10) because I was worried someone else would mention it, either in teasing or just curiosity, and i wanted him to be prepared and not caught off-guard. So, instead of sitting him down like i was going to give him bad news, I started bringing it up nonchalantly in conversation.
When he’d start stimming, I’d ask what he was stimming about. He’d tell me. I’d say that a lot of autistics stim and they really seem to enjoy it. And then ask if he knew what autistic meant. If he was listening, I’d give him our cognitive age-appropriate definition. Sometimes when he says something out-of-the-box but completely perfect, I’ll tell him that I wish I could think the way he does. My brain isn’t autistic…and go from there.
I think the best way is to bring it up in convo. And don’t over explain. When they’re ready to know, they’ll ask more and more questions. Of course, I have no clue what I’m doing and I’m making it up as I go along. But that’s how I did it.
I think it’s good to be proactive with helping them understand and accept themselves, so bravo for that. I hope you find the right way to let him know what makes him beautiful. Good Luck! 🙂
thanks for the tips. i love the idea of comparing it to super powers. he’s so into super heroes so i think that we’ll definitely help. we don’t want to overwhelm him with it but at the same time, we want him to have the opportunity to ask questions. so we’re going to have a special time with just him. we have a 6 yr non-spectrum very talkative and outgoing little girl as well. she usually doesn’t let him get a word in most conversations. we’re planning on talking to him about it and then eventually talking to her about it. she knows that he’s different and has these special appts but nothing more beyond that.
i’ll let you all know how it goes
Ok so, my son is 5. He is was born with a brain birth defect – dysgenesis of the corpus callosum. We have been aware of the medical diagnosis since he was 10 days. At 27 months we were given a Autism diagnosis via developemental peds & second opinion pyschologist. So two diagnosis – medical and behavioral as it has been explained to me. Now, our school likes to play them off each other or only acknowledge one diagnosis. We have an upcoming IEP meeting on Weds. and looking at draft documentation. I caught that it has him listed with Pervasive Developmental Delay & the Dysgenenesis of Corpus Callosum. And in another spot it reads “..diagnosis of corpus callosum accompanied by characteristic austistic behaviors, impact all areas of his development…” So, should I be pushing for the autism diagnosis or is PDD ok? My son is nonverbal and seems to be closer to 3 yrs in most aspects except for a few areas. Other professionals (private) all list him with a Autism Spectrum Disorder… appreciate any thoughts. As we have gone around and around with our school district on his services. Thanks in advance.
wow, that is a problem. i wish i had some good advice for you. in our situation, whatever the school labels my son doesn’t have much affect on what services he has available. if he is deemed special needs, then he has access to whatever services will help him. (legally speaking, of course).
it has been my understanding that PDD is on the spectrum. the spectrum is so vast that they can’t come up with a moniker for every place on it. PDD-NOS, as i understand it, just means they have enough traits to be on the spectrum, just not enough to have a more specific label. I could be completely wrong, however, since my son’s dx is for classic autism.
whenever i have questions about the school/rights in my area, i contact the Autism Society’s local chapter. They not only have information, but advocates who will attend IEP meetings with me for free and hash out the details with the school staff.
Good Luck in your search! 🙂
Please look at the facebook page for Save our precious son’s life and pray and do what you can to help this family. Thank you
Once again Jess…thank you for creating such a wonderful resource!
I am really in need of some advice. We have recently transitioned from Early Intervention Services to the IU8. It’s a whole new world. We now have a case manager, psychologist, BSC, OT, Speech Therapist and MHA as our team. While I was hoping to love them as much as our old crew I am really struggling. My darling 3year old is growing by leaps and bounds and along with her growth has come a host of new and difficult behaviors. She has an amazing vocabulary that becomes non existent the moment she becomes overwhelmed in any way. I am a firm believer that each of her behaviors is an attempt to communicate. That said her new team, not knowing her well, has turned to an approach that makes me nervous. They seem to believe that her behaviors must all be broken. They repeatedly insist that I show her “tough love” at all times. They reference, of all things, Supernanny, again and again…as if it’s the magic bullet for each of our struggles. All fingers point to me, day after day. They’ve made comments that include, “if she’s really autistic at all…” They show up at school and home unannounced and insist on having discussions about her behavior right in front of her. I feel like I’m spending more time arguing her diagnosis than working towards helping her.
I feel so entirely confused. Almost as if we are at day one again. I wasn’t sure where else to turn and I’m not really even sure what my question is. I’m just feeling incredibly overwhelmed and frustrated.
Can anyone recommend a good advocate in SW Pennsylvania? I’m guessing that needs to be my first order of business.
Sarah- I am so sorry that I am just seeing this. I had been getting emails regarding comments, but apparently haven’t gotten them recently.
As far as your problem, email me. I am also in SW PA also with a three year old who just transitioned out of EI. Maybe we can work together. Hugs.
(Don’t laugh my hubby made this up: super biology babe (all one word) at hotmail .com)
I would also add, that you know your child best. If you disagree with something, speak up. Sometimes opening a good dialogue with your team will bring you all onto the same page a lot faster. I’ve had many disagreements with our own teams – I have three children all on the spectrum, all with their own behavioral teams – and I can be very opinionated with them at times, but they are all doing fabulously now. If you want to Email me, I might be able to give you some different contacts. Hang in there.
I am a middle school special ed teacher, and one of my students has autism and major behavioral needs. He hits nearly every day–other students, teachers, even the head teacher, and it’s enough to leave slap marks and bruises. He is very verbal and will tell you that he didn’t get what he wanted, so he hit you. I strongly believe that it is intentional and manipulative, but his parents insist that he has autism, so he is incapable of bullying or trying to hurt someone on purpose. They tell me it’s my fault and I don’t know how to handle him. They constantly belittle us at the school and show us no respect. I have bent over backwards making accommodations for their child, but they basically want me to give him everything he wants. Any advice?
Hi Lynn- does the family have a diagnosis? If so, do they possibly have a psychologist or behavioral consultant that you could consult with? That might be a good starting point.
Does anyone have experience with public schools in the Denver, CO area? Please share the positive and negative. Thanks in advance.
My daughter is 8 years old and is on the spectrum with an official dx of PDD-NOS. She is considered “high functioning” and is mainstreamed into a regular class. She does have her own set of challenges, and goes to ST and OT multiple times on a weekly basis. She was late to speak and even later to potty train. Her baby teeth came in late, but her adult teeth have come in at the average time/a little early. She was adopted from China at 14 mos. We have no family history.
I’ve been hearing a lot about girls who are menstruating at a much younger age (as early as 9 or 10 y.o.). It’s been on my mind lately, how does a parent teach a girl on the spectrum about this part of her life? How do you prepare her for it, how do you teach her how to manage it, etc. Any words from those who have BTDT would be greatly appreciated. If you’d rather not do it on a public forum, please feel free to email me at artisgoodinyourlife [at] gmail [dot] com
thanks!
I have been thinking a lot about this as well as my kiddo is nine. This looks like it might be a good place to start ..
(Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism)
I haven’t read it so I can’t recommend it, but it’s one of the few resources I’ve found that tackles the topic head on and includes personal safety.
One more link that might be helpful —
http://www.autismawarenesscentre.com/article-library/autism-questions-and-answers/291-how-do-i-prepare-a-girl-with-autism-for-menstruation
Dear All
I’m starting a new job soon working with, and providing training for, young adults on the autistic spectrum in a digital archiving project . I have a wonderful 4 year old boy with ASD so I am incredibly keen to make the project a success.
One of the young men I’m hoping to be working with finds it very difficult to talk with people he doesn’t know well. He is also very sensitive to sound. We communicate well over email but when we meet up I find it tricky to work out how best to act. I don’t want to put pressure on him to talk by trying to engage him in anything but very necessary details for the job, so I try to keep our spoken communication to the minimum – but of course this feels awkward for me and I don’t want to come across to him as being cold or rude. Does anyone have any advice? My own son is incredibly chatty, and is also much younger, so it’s difficult for me to draw on personal experience.
Many thanks in advance for any thoughts.
Sarah
Could you meet in person just to be there face to face, but IM via smart phone or chat room? We had a student at my school (where I work) who was a self selected mute. He would type everything, including his thoughts in class discussions, etc. and the teacher or a friend or table mate would read them out loud. If he had an iPad or iPad mini he could just use the notepad feature and type out his part of the conversation pretty quickly.
People on the spectrum can be very focused on a project, which makes it hard to chat. My suggestions is to use e-mails to work on an agreed set of rules. Be blatant about what is troubling you (which he is likely to appreciate.) An example would be work time is for work, and break time is time to get to know each other and talk about non-work things. Make sure he knows that it is perfectly acceptable to talk about work related things during work time (he may not know this.) Make these rules clear, and precise, and with no unstated assumptions, if it can be helped. Let him know it is always allowed to ask for clarification on the rules. If he is up to allowing chatting on non-work subjects during work, again make clear rules so that he knows what is acceptable. (i.e. Any subject is OK as long as it takes less than 30 seconds. It is courteous to ask how you are feeling at the beginning of each day. You can talk as much as you like if you can still do your work.)
Start slowly. most of us on the spectrum have had bad experiences with unwritten social rules at work, so we feel like we are walking through a mine field. Give us clear rules and, once we feel safe, it tends to be hard to get us to stop talking.
John Mark McDonald
Scintor@aol.com
So what would be your take if your school district approved a program for special education in which they decided to name it – SAILL – Students Attaining Incredible Life Lessons ? It is for a k-3 multi-needs classroom? I have lots of questions about what even will be going on in the classroom….life lessons is that code for life skills. My desire is to see my son, 5, be taught academic lessons…really given a chance. My concern this move is to a life skills approach and even more that the district has a low expectation for what my son can learn. Incredible Life Lessons….is it incredible he can learn? Thoughts…ideas about how to enlighten the district on my feelings? This is the tip of the iceberg as the staffing, location, curriculm are still to be determine BUT yet my kid is being pushed to this placement for next fall. This seems to be their move to not allow us access to a private placement. I should note we life in a small town, 2500 people, so thus a school district too. Thanks for any input!
Oh Janna,
This is one of those things that could be very good or very bad. My personal experience with school was that the academics were easy, it was my peers that were incomprehensible. People on the spectrum like myself need to be taught social rules and interactions directly and blatantly or we do not get it. If this is their goal and how they run the program, then this is a good thing.
On the other hand, both of my children were placed in special needs classes where their academics were (in my opinion) unnecessarily “dumbed down” when they were quite capable of doing grade level work or better in many areas. If this is what they are doing, then this is a bad thing.
My suggestion is that you go talk to them directly. Take someone with you who loves your son and is unflappable and who knows what you are trying to get across. I would say something like, “Children on the spectrum are well known for developing at different rates in different areas. They may be behind in one area and well ahead of their peers in another. I really want to make sure that his areas of strength are not being neglected while the areas he may be behind in are being addressed.” The idea here is to let them know that you expect them to assume competence in your son in all areas that he has not shown difficulty in. Most teachers want to be on you son’s side and be your partner in making him successful.
I know many schools are having financial difficulty especially with unfunded mandates (where they are required by law to provide services, but are given no money to do so.) They are probably as frustrated as you are if not more so. Offering to be a partner and a resource that is trying to help them will often get them on your side and lead to a much better outcome.
John Mark McDonald
Scintor@aol.com
I was reading on CNN about the boy that the man is holding hostage in the underground bunker. The police had said the child needs meds and the perp got them to him but never said what they were for. Tonight I read that he is one of our kids, Aspergers and ADD. Can we all please say a special prayer tonight for the child and his safety? My daughter would not be able to handle being in a small enclosed space for as long as they have been there and she don’t have the added stress of ADD. Thanks everyone,
Mary
My heart is breaking. Is there a FB page set up for him where we could show him and his family some love?
I don’t know, I’ll look around…
Thw mon from “The Crumb Diaries” posted a link on her page to a family that is at the end of their rope trying to get help for their daughters outbursts. She has autism and has hurt the mom during an outburst. Wanted to share if anyone has info that could help them. Here is the link to her blog:
thestatuswoe.wordpress.com
I need some help. I am looking at investing in some tools to help my son with his sensory needs. He seeks movement and chews like crazy but I also need things to help calm him down when he is upset and the meltdown is nearing. There are so many products I don’t know where to start. I was just wondering if anyone has purchased anything that they have found works well.
Karen
For home, this has been a Godsend, and it’s a fraction of the price of the ones you’ll find in OT catalogs.
http://m.ikea.com/ca/en/catalog/products/spr/19809351/
Brooke also loves her body sock –
http://www.etsy.com/listing/87841516/extra-large-lycra-solid-color-theraputic?utm_source=googleproduct&utm_medium=syndication&utm_campaign=GPS&gclid=CKPj8_3Zq7UCFY2Z4AodpWUARg
(again, these are MUCH cheaper than the ones in the catalogs)
Hope that helps and cuts down on the ‘investment’ factor a little bit.
😉
Thanks for the help Jess. I will invest in them both. I have a feeling the chair will be a big hit. 🙂
Hey there…
I have been feeling a little helpless and lost lately to the point of tears so I thought maybe I should check in here… My son is going to be 12 in April. He is diagnosed with Aspergers / Adhd. I have recently gone through a divorce and we recently moved across the country and are now living in my parents house (a place where my son is VERY comfortable and used to, thank goodness). I realize this is a difficult time in general – but my son has totally “checked out”. On the weekends, it is a struggle to get him to maintain contact with anyone socially- let alone leave the house and do anything other than playing minecraft with his friends online… Things that haven’t been a struggle for us since he was five years old, such as dinner routine, bedtime routine etc are now a battle.
Puberty is hitting him so hard. He is 5’3″ and growing so fast.
I am trying to determine what is Asperger’s affect on this time in his life -vs – puberty for all “tweens” in general…
I feel like I had “it” figured out, which is silly I guess- but I knew where his vulnerabilities were, I knew how to handle them, I knew how to connect with him as a young boy… THIS… going on 12… is a totally different world.
My instinct is to go back to basics. Outlines on poster boards of schedules of the day which instead of including tooth brushing and meal times would now include times for when xbox and cell phones are appropriate and when outside time on weekends (which has always been a struggle) is expected.
Also… he is finding it IMPOSSIBLE to fall asleep at night. I have moved dinner to earlier in the night – no milk or sugar late in the day… nothing seems to help. He has a lot of anxiety about the dark etc, we battle over turning the lights off in his room because he can’t fall asleep with the lights on – but when I turn them off he has so much anxiety over the dark that he can’t fall asleep with them off either.
Now, as I type this, I realize that all of this could just be signs of non-routine due to this giant shift in our lives.
I just feel like my son and I are constantly in a battle. I know he needs me but he has emotional mood swings that are hard to handle. When I try to instill rules it’s like all hell breaks lose.
I feel like a terrible mom… I feel like everything I thought I had a handle on, I have no idea what to do about anymore because you obviously can’t handle a 6-8 year old the same way you would handle a 12 year old. I feel like this jump of who my son is, came upon us so quickly.
Anybody else have a pre-teen on the spectrum?
Thanks so much for listening – feels so good to write it out instead of walking around with it in my head.
Thanks,
Amanda
You are not a bad mother, but you and your son do seem to be going through a very hard time in life.
Let me introduce myself. My name is John Mark McDonald. I’m a middle aged man on the spectrum and I have two children on the spectrum as well (son, 13 and daughter, 11). Your parents going through a divorce, hitting puberty and moving all at the same time would be hard on anyone, and acting out under the circumstances is perfectly normal (of course, this doesn’t make it any easier to deal with.)
You mentioned that your son has withdrawn from social contact on the weekend. You’re going to have to trust me on this, but this is the most natural thing in the world for a person on the spectrum and should be treated as such. For those of us on the spectrum, social contact is distressing and exhausting. Telling us to be social when we are under stress is like telling a gasping athlete who is dripping with sweat “why don’t you sprint around the block and that will make you feel better.” People on the spectrum NEED solitude and downtime to recharge and recover. If he is interacting with friends online, then he is getting all the social contact he needs and can handle right now.
On the other hand, clear rules and schedules would probably be a great thing right now. This will be similar to when he was smaller, but with some significant differences due to his age. A great thing to do here is sit down together and figure out a set of clear rules and schedule TOGETHER. If you let him know what you want, he will do most of the work and will probably surprise you with how strict the rules he will come up with. You job will be to remind him of areas he may have overlooked and to NOT bring up the past. This exercise can go a long way in rebuilding trust and helping him feel that life is getting back under control.
The last thing I should mention is that transition points in life are always hard for people on the spectrum. Certain “experts” and pieces of literature seem to give the impression that one can solve the problems of being on the spectrum. This is patently false. Those of us on the spectrum learn to work around the things that do not come naturally to us like they seem to to everyone else. This does not stop them from being hard. This also means to a growing kid on the spectrum that every time that our peers make a major transition, we have to start over and learn a whole new set of rules about things that make absolutely no sense to us. It’s going to be hard, and he is going to struggle EVERY TIME. I’m 43, and it’s still happening to me. This is a normal part of life on the spectrum.
Anyway, this is a hard time for both of you, but with some time and patience (and a few adjustments), this will pass and things will get better.
John Mark McDonald
Scintor@aol.com
Dear John,
Thank you so much for your response. I can’t tell you how much I appreciate it. The advice to let my son be a part of the scheduling process is great.
Also the reminder that these problems can’t be “solved”. I guess that’s me trying to find some structure myself. 🙂
Also, it was very comforting to be reminded that it’s okay to let him get down time in his room alone… I just always feel that I’m not doing enough, I’m not trying hard enough… I feel guilty because it’s easy to let him stay in his room all weekend… Sometimes I feel like he’s the forgotten child. I have a three year old and he gets so much of my attention… I guess I just want to give my eleven year old attention too.
It’s very good to be reminded that leaving him alone is maybe just what he needs.
We used to read books… we used to watch movies together…. now, the preteen “coolness” has set in (and I think he mimics what he thinks being “cool” means) and he doesn’t want any of that anymore.
Ugh!
But honestly, thanks John, really a helpful, thoughtful email.
All the best,
Amanda
None of us can do it by ourselves. This is an especially hard lesson for those of us on the spectrum to learn. You reminded me of one more tip. Often those of us on the spectrum like to do things “in parallel.” This means doing the same thing at the same time, although not necessarily together. A good example is each of you reading a book at the same time, (although the favorite of boys on the spectrum is playing video games on two separate machines.) Try and think of something you both like to do that is calm and quiet. My son and I do this all the time (and it baffles his mother) and it makes us both feel great.
Anyway, I am glad that I could help, and I always try to be available.
John Mark McDonald
Scintor@aol.com
Wow. That is great advice! I’m thinking of Jess’ post about Christmas… Maybe I’ve just been holding on too tightly to what I wanted to do with him. I will give it a try.
Thank you so much.
I am a big fan of Jess , Luau, Katie and Brooke and just love living vicariously through them because, yes this is just like my life too. Well, mostly because Brooke ‘s father is supportive. My question is: do any of you know of any resources, support paths or practices to help deal with my son’s father, we are no longer married, who does not believe our son is ASD and does not want him on an IEP? It is constant conflict and I do what I can but I worry about the best interest of our son. School is caught in the middle and their hands are tied because we must agree. I could always hire a lawyer I cannot afford, but I would rather try a less conflicted path to try and resolve. His father is stuck in the new term Jess shared with us from another’s blog, “Ableism” where he wants our don to be “normal” and I just don’t know how to cope with it all. Any guidance, suggestions, and/or advice would be appreciated.
wow. that is a tough situation. my husband and i don’t always agree on what’s best for our son, but we still live together so i’m able to manipulate him a little 😀
i’m not in your situation, so the best i can do is try to imagine what i’d do if i were. there is a local community-supported counseling group here that operates on a sliding scale fee chart. they would work with both parents in counseling, which would help your husband process and accept that his son has ASD. mediation is an option, but you’d have to get him to agree and then there is the fee.
regardless of how this situation progresses, i hope you don’t let it get you down. lots of parents don’t agree on how to raise their kids. the kids turn out okay and so will your son. as long as your son knows that YOU see him as he is and love him, that he can be himself with you and that your home is his haven, he’ll know that he’s valued. i don’t mean to underestimate your plight, though. if i felt that my husband was stopping my child from getting the most benefit from school resources, I’d feel angry and cheated. if your husband refuses to budge or cooperate with mediation, maybe you could see a counselor. at the very least, it would help you deal with the emotions so that you don’t end up resentful or bitter, which in turn will help you be a better mom. sorry i don’t have any answers. i truly hope you find the solution you’re searching for. 🙂
My son will be 9 in a few weeks. He is PDD-NOS, well enough functioning child in a regular ed classroom with little support. Great, understanding teacher, accepted by peers. I said ACCEPTED, not embraced. He is quiet, flies under the radar, you won’t necessarily know he is spectrummy till you spend a few minutes getting to know him, but once you do, it is fairly obvious. There are few playdates, birthday invites, etc, but he is fine with this. Full disclosure I do not seek playdates with “unknowns” from outside. He plays well with his siblings and the occasional “other” that comes in who gets him, but he does not ask for outside play dates nor does he question the lack of invites, etc. That is my concern, but not his, and he relishes his alone time as much as he may enjoy joining in a playdate in progress for his older sister (she is very inclusive and kind). I will admit that him not pushing makes me not push, as I want to protect him as much as possible from kids who won’t get him. I AM SCARED that they will not love him or tolerate his quirks when they are one on one. That they will think he is lame or count the minutes till they leave and then NEVER want to come back. I see the looks he gets sometimes when he is having a “moment”, and it hurts my heart EVERY. SINGLE. TIME. He’s not freakish, he’s just HIM. A playdate is fun for him for about 15 minutes and then he wants to do his own thing and will leave a friend hanging. No bad intent, just had his fill and moving on. He’s different with his siblings since they know him and embrace him and treat him like any siblings would. If he leaves the scene they move on and do something else in their own home. He is happy in his skin, happy with who he is, and doesn’t see/care if he is a little different.
My husband feels that I need to push him and schedule more playdates. I am on the fence. I so want him to have friends, but I want them to be the friends that he FINDS or find him, not the ones that I set him up with in a game of trial and error. Like a matchmaker. I want it to be on his terms, with a kid who thinks he is cool and who he thinks is cool and then they are cool. That has more value to me than a setup.
Please thoughts? I think….?
There are so many comments on here that I couldn’t read them all to see if anyone has posted this already…asking for grace everyone! My son does alot of the “scripting” that Jess has described with her daughter, and I am wondering if the best approach is to play along, and respond to the script, or if it is better to try to steer the talking toward a more conversational give-and-take. I am wondering in part because his teacher says that he does this at circle time and it is very distracting (possibly his way of disengaging from something that he is struggling with). Its an Autism class, a special ed teacher, so I don’t think she has a “problem” understanding his issues. I would love to find a way to get him to attend to tasks and people rather than isolate himself with his repetitive speech, but I honestly don’t know if that’s right. Anyone?
That repetitive speech can be the first step toward meaningful conversation. It teaches the give and take if you go along, it’s predictable therefore comforting for the child, actual words and sentences are used ( in most cases, lol), and for my kid eventually those scripts started to evolve. Same cadence and inflection, but different words appropriate to the conversation. I still hear it sometimes and he’s 9, but other people can’t tell because they haven’t watched Max and Ruby in years to remember. :-).
Also, the script can indicate the emotion, meaning there can be a happy one, one that is triggered by anxiety, etc. I would tell him “no tv talk right now please” when it was not appropriate or being used for avoidance. (On the upside he’s probably gonna have an amazing memory, which comes in handy… Unless its to remember a mistake you made). There’s kinda no getting away from it esp at such a young age. Ride it out babe and try to correct it when you need to, but know its still gonna persist. Perseverative language has an upside and a downside.
Thank you so much for your quick response! I really appreciate your advice and encouragement!
Cheryl said it beautifully. I’d also suggest reading this. No, really, read it. 😉
http://momnos.blogspot.com/2006/03/dr-strangetalk-or-how-i-learned-to.html?m=1
http://momnos.blogspot.com/2012/02/spirited-away.html?m=1
And this…. Mom-NOS and Jess have pulled me out of the dark more than once.
That was a great article, exactly what I needed to read. Thanks for your help!
Hi there
My son has autism and will be 5 in a few weeks. He is now successfully peeing in the potty. He will not poop in the potty. He will sit on the potty, but not go. He will either hold it, go outside or in his pants as soon as he is off the potty. 😦
I have tried scheduled toileting, the potty party method and giving him highly reinforcing items (or the opposite-letting him know he will receive a reward). Nothing seems to work. 😦
Please let me know any advice, tips or ideas that you may have. Thank you.
1st of all, it doesn’t matter his age if he’s not cognitively ready. but, regardless, i just went through this with my NT daughter. She’s all good with #1, scared shitless of #2. (<–see what i did there?) So what I ended up doing as a last resort was feeding her a natural food that was a known diarhetic and then waiting maybe 20 minutes and then setting her on the potty until she had a movement. Once it took 35 minutes of sitting and I felt (feel) like Mother, Dearest. I did that until she lost her fear of going and did it on her own, making such a large production of our victory that she now expects a party after every poop. Disclaimer: all natural foods, never enough to cause dehydration, just enough to strongly suggest to her bowels that something needed to happen, and my daughter is NT with a slight anxiety disorder which is not the same as a child on the spectrum. I also tweaked the rest of her diet replacing most beverages with water, etc.
My HFA son was almost 5 before he mastered the potty. A lot of us have potty-training horror stories. The peer pressure to have your kid potty-trained by a certain age is the most stressful, for me. I hope you act out of support for your son and not in desperation to please the masses. I wish there was a fail-safe secret I could share with you but each child is completely different. Good luck to you and try not to let it get to you. He'll get there. 🙂
Thank you so much, Luna. Your responses are always so thoughtful.
He is on a rather natural diet, since we avoid high fructose corn syrup, artificial colors and preservatives and a few other things. That leaves mostly the good stuff. 🙂 I have been increasing his fluids in the hopes that it will make things easier on his system. I like the method that you used with your daughter, and think that will work for us. Since he doesn’t want to go back to pull ups, we kind of have to push forward. 🙂 perhaps patience and consistency will work in the end (fingers triple crossed). 🙂
geez. that is tough. sounds like he’s already on an optimal BM-supportive diet. i talked with the hubs about a strategy when we were going through it. how do you make someone want to relax and go?? once, after 3 days of nothing, i gave her a half spoon of karo syrup. not sure if that fits into his diet or not, but it had an almost immediate affect. (and thank you so much for noticing my comments. very sweet of you!)
We just went through a similar thing with my daughter. She was about 4.5 when she started to go to the bathroom pull-upless. But it wasn’t untll she turned 5 before she could actually tell she had to go and let us know. That’s for #1. #2 was more difficult, she would hold it for days. She just had some issues and in the end our friend whose (NT) had similar bowel issues told us she gave her 2 prunes a day at breakfast. So we started as well (daughter is PDD-NOS). It helped quite a bit. She’s not regular every day but much more than before. In terms of getting her to sit on the potty that was also difficult but it’s amazing how videos, social stories, a little peer pressure, and a lot of bribery-rewards-cheering-and stickers can do. It seemed like we searched for the perfect thing that would keep her motivated but in the end she the novelty of a reward would wear off so we had to switch around a lot.
By 6, just in time for kinder (late birthday) she was finally able to let us (more importantly, teachers) know and not have any semi regular accidents but our biggest problem was night time wetting. We were thrilled that at just days before her 8th birthday she was finally able to keep dry for 7 consecutive days. For three years it was fits and starts with the night time training and I felt an absolute failure. But now I know she just wasn’t ready, her body wasn’t ready. So some things you simply can’t force to happen. If the body isn’t ready, no amount of training will help.
Good luck!
Hey Everyone: First time poster here. I think this is such a valuable resource and right now I have a question to pose to the “village”.
I have an almost 4 year old who while is not on the spectrum she does have Severe Childhood Apraxia of Speech, Hypotonia and recently diagnosed with Sensory Integration Disorder. With her Sensory needs she is very much a seeker and in the beginning when we began to notice something was “off” we would see her putting her tongue on things, pillows mostly but some of my clothes depending on the texture of the cloth. Over the past few months it has progressed to her sucking her tongue. This sounds so weird but its the only way I can find to describe it. Her tongue protrudes and she sucks with her tongue out. It is similar to a thumb suck but backwards sort of. The problem is that with this behavior and her low tone her enamel is disappearing from her front teeth. We do have an appointment with a dentist next week and I am hoping that perhaps they have seen something like this and can offer support as well. I have a feeling they will want to pull her front teeth which I am prepared for but I want to find a different oral input for her that won’t affect her future teeth.
Has anyone dealt with anything like this? Any other options to mention to the dentist or therapist?
She currently receives 120 min of speech therapy a week over 3 days / no OT because our insurance won’t cover and I can’t afford the costs along with speech.
Thanks in advance for any help you may have.
I’m not sure I have any good answers for you. My daughter sucks on her bottom lip constantly and goes through intermittent periods of teeth grinding… Have you tried chew-noodles or other sensory type chewy toys that she could get some input from? There’s a website called fun and function .com (all one word) that has lots of sensory toys for chewers – even if you didn’t get something there, you might get some ideas… Another trick I discovered, through trial and error, but then confirmed by OT – low tone kids have trouble finding where their tongue is in their mouth, which leads to feeding and speaking difficulties. So big flavors – especially spicy flavors- can actually be very helpful. We give my daughter salsa with her eggs in the morning, my son is best behaved in Indian restaurants because the spice gives him the input he is craving. Not sure if this will help your little one, but could be worth a shot. Start mild of course, but see if she likes it.
Thank you for the site to check out. She isn’t a chewer really but it might work and I am willing to try. My concern is that it’s mainly when she’s sleepy and sleeping that it happens a d I don’t want her sleeping with anything that could be a hazard of any sort.
She loves most all foods and does like some spicy stuff
The OT theory is often that if you can get enough of the right kind of input, then possibly they won’t need to seek it out on their own- that their sensory appetite will be satisfied to some extent. It’s not always the case. Like I said, my daughter still sucks her lip, still grinds her teeth…. I’d be really interested to see if someone else has an idea for this one, because we could use some help over here as well.
Is she allowed to chew gum? My daughter is allowed to chew gum after school after her therapy session, she’s is also allowed to chew gum after dinner for about 20 minutes. But nothing before lunch on the weekends and definitely not during school time.
I also don’t have any really good answers for you but my daughter does a lot of oral seeking as well. A few things that help her lessen inappropriate seeking are incorporating lots of crunchy foods into her diet ( baby carrots, popcorn, shredded wheat), massaging the inside of her mouth with a baby “toothbrush” (gum cleaner), lots of regular tooth brushing, and sadly, lollipops. As Erin mentioned, the more input we provide through the day, the less she struggles at night.
My son has recently had a bout with loose stools and some diarrhea. (YAY FOR FUN TOPICS LIKE POOP!) We are hoping that it is just allergy related (accidentally ingested some dairy at preschool) or a virus. However, I am wondering if anyone has seen digestive problems in their autistic children due to stress? He is four years old and doing well in an autism support classroom. He was doing so well that the increased his time in the inclusion room to full days. It seems like he’s regressing with the potty and having more temper tantrums. His team, my husband, and I decided to back him off in the inclusion room to half days for the time being.
Does stress seem like a plausible explanation to anyone or has anyone had a similar experience? Thank you.
Oh goodness yes! I have had Asperger’s syndrome for 43 years and I always have digestive problems when I am stressed. This is one of the less fun side effects of being on the spectrum. Digestive problems are so common for those on the spectrum that many self-advocates recommend adding it to the criteria.
John Mark McDonald
Scintor@aol.com
Thank you for your response! I’ve notice more digestive issues when there are big changes in his schedule or more transitions in his day. I am sure it is causing stress; I know changes stress me out! Hopefully backing off on inclusion and easing him in a little more slowly will make a difference!
We have experienced the same thing. When our son (who is almost 5) had his schedule changed at school to include more transitions(which are always difficult for him)he experienced diarrhea and diaper rash.He also started refusing to even try to sit on the potty for a while. I would say that stress can definitely contribute. And not just in our kiddos.
Anxiety is the activation of the fight or flight system when no fears are present. That stress causes a rush of adrenaline that redistributes both water and blood flow. That redistribution means that your gastrointestinal tract is not filtering water correctly, leading to poor stool health. Your body also slows the digestion of food, which contributes to diarrhea.
There are additional factors at play as well. For example, the stress of anxiety will put a considerable amount of physical stress on your stomach and organs as well, and that pressure may lead to your body not processing food well. All of these can lead to diarrhea.
It sounds like you have taken positive steps to reducing his stress, so that should help.
Thank you for your reply! This is exactly what we are dealing with. He has more transitions and slightly less assistance through those transitions. The expectations are higher and it seems like he is having a hard time with them. I will be interested to see if he has less problems now that we are backing our time off in inclusion.
I am going to be totally honest here and say that I am terrified to bring this up in a public setting. But, since NO ONE talks about this anywhere, I figured this would be a safe spot. My daughter is at the Aspie end of the spectrum. (I would also add that our family is full of Aspies…we just didn’t know it until her diagnosis.) She is also diagnosed with Anxiety Disorder because her anxiety issues are severe and crippling. Her sensory issues are also severe, and she also has an extreme need to achieve perfection. In March, she started a rapid downward spiral…and she started having psychotic episodes. I know that many people in the ASD world believe that I have it easy. But, I want to stand on my soapbox and say that there is nothing easy about having to admit your child to a psychiatric hospital. She was in imminent danger to herself and others. After what happened in the school shooting in Connecticut, and the very public statements mixing Aspergers and mental illness, I have been even more reluctant to discuss any of this publicly. But, I NEED to talk to other parents who are dealing with the co-morbib issues of ASD and mental illness. I am walking a terrifying path right now into the unknown. I just want to know that I am not alone.
Lisa, I have very close friends whose children have very similar situations. It’s incredibly difficult. I know others will speak up but please believe me when I tell you that neither you or your daughter walk this path alone.
Hugs to you both.
Thanks, Jess. We started down this new fork in the road right after you started dealing with epilepsy. You were describing so many things that mirrored what we were going through. I wished like anything that I could call you up and just share the fear and stress and worry, especially when I was in a hotel room alone, three states from home, waiting for the one hour a day that I could see my daughter. Your blog is one of the safest places I have found to share. For the most part, everyone tries to be polite and supportive. And, I have been trying to think of a way to connect with other parents going through similar events, but NOBODY talks about this. I understand why…we are also interested in protecting our daughter’s privacy. However, if there has ever been a time that I wanted to lean into the comfort of a community, it is now. Thank you for providing such a space.
My heart breaks for you. I’m afraid I cannot fathom what you’re going through. I hurt having to hand my son over to the school. Handing him over to a hospital, well, i seriously can’t even begin to imagine that. I have a friend who is the mother of a little boy who is probably facing some similar issues. His mental illness is probably due to his birth mother who abused drugs extensively and had a history of mental illness herself. He has several issues, including Asperger Syndrome. He’s a little young to diagnose his other issues, but his psychiatrist is seeing markers. My friend is distraught as she contemplates his future, his safety, her safety, and the safety of others. My point being you are most assuredly not alone.
Have you tried the hospital where your daughter was admitted? Maybe other parents of patients could offer support? Does she have a diagnosis yet? Maybe with a dx you could find something online. MentalHealthAmerica.net?? 1-800-273-TALK is a hotline for that website. Networkofcare.org is supposed to provide help locating support.
Sincerest wishes that you find the help that you and your daughter need. {{hugs}}
Thank you, Luna. Honestly, I don’t want you to fathom what we are going through. It is a level of pain that I never imagined. I always thought that there was nothing worse than watching your child suffer. I was wrong. There is nothing worse than watching your child suffer so much that you have to surrender all control over the care and treatment of your child. I had to surrender the rights to see my child…to be with my child…to hold my child…to be by her side through the pain. The rift in my soul is massive. I cannot even acknowledge the guilt and regret that are lurking in the shadows. But, inspite of my doubts, we all survived her seven day hospitalization. I lived for those one hour visits. We were three states away from home, so I had to spend a lot of time alone. Sometimes, lying in the hotel bed a few miles down the road, I would try to project my love and protection to her…hoping she could feel it in her spirit. The day we brought her home was a day of elation. And the beginning of our new normal. She is a new person, and she is better. She now knows that we WILL do anything to help her. She knows that there are other people out there, who are just doing their jobs, who can help her, too. She does not HAVE to have us with her to survive. She now knows that she does not have to let the anxiety win. She has power and choices and options. And she knows who really loves her. I think she even learned to love herself. It was a great treatment facility. We loved the doctor and the staff that we were allowed to meet. They did a great job. But, as for life experiences, it ranks at the top of my chart for most terrifying. And this is far from over. She still has much to overcome. Just the thought of going back to school set off psychotic episodes. Sooooo, this week, I withdrew her from school, and we have registered to homeschool. I will do what I have to do to keep her moving forward. We do not have a long-term diagnosis. We are in “wait and see mode.” So, thanks for listening and caring, even if it is not something you can imagine. And thanks for the hotline numbers. Honestly, I had not even thought to look for something like that.
giving her the tools to cope sounds like all you can do. good for you for fighting for her and for letting yourself suffer so that she could get help. i also pulled my son out of school, for much less dire reasons, but i understand completely your desire to put her health and quality of life ahead of what society considers *acceptable*. thinking outside of the box and willing to do any and every thing to help her is what a good parent should do. i know we’re on very different paths but if you feel like talking/venting/whatever, look me up on fb… Luna Mireles…i’m a pretty good listener and i never ever judge other’s choices. sincere wishes you find your village. 🙂
This is a most assuredly a safe place to bring this topic out in the open. Mental health issues spend too much time hidden away in the general populace.
I am so proud of you for the way your family LISTENED to your daughter, took her concerns and anxiety to heart, and sought help.
I do not have any personal experience with co-morbid issues so far (fingers crossed), but I have heard of this website called Parenting Aspergers Community. The website is https://www.parentingaspergerscommunity.com/
There might be more options available there for support.
Best of luck, and keep us updated. We are here for you.
Lisa…you are from from alone! And it takes a lot of courage to do something so very terrifying to help your child. My son is on the spectrum and is also bi-polar. There have been a few occasions where we considered hospitalization…I had looked at a few local facilities and had an admittance plans a couple of years ago. I felt physically sick to think of putting my baby in a psych unit. Had he not been started on a new med that seemed to help him turn a corner, we would have admitted him. I also have friends who have had to admit their kids as well. Anxiety and mood disorders are very commonly co-morbid with ASD. It sounds like she greatly benefitted from her “break” to get the help she truly needed. As with any illness, our job as parents is to find the right doctors and stop at nothing to get them the right help. You did just that. I truly understand the anguish. Perhaps the doctors who have helped your girl can help you find a community for support. You definitely have one here.
Thanks, Deb. It has been cathartic to just get it out here. We have friends and family who know what is happening… But, I am the strong one. I am the one people lean on. I have few friends who can handle this. Actually, only one. I consider myself blessed to have her. But, she has her hands full with a severely disabled child of her own. Which is, of course, the only reason she is strong enough to handle MY fears. She has been thru hell herself and survived. When she says I can survive this, I believe her. I was also blessed to have recently met both Temple Grandin and her mother. When I listened to her mother, one of her statements has stayed with me throughout our ordeal. She said, “There are no right answers on this journey. There are only choices. And choices can change. When something does not work, make a new choice.” I needed to hear that because I am terrified of making the wrong choice. So, far my daughter is alive and making strides forward. And, for today, I will count that as success.
Our local psychiatric teaching hospital (Lucille Packard Children’s Hospital, Palo Alto) has a parents support group (no therapists, just parents). It meets once a month. There are other parents going through similar experiences to the ones you describe. They advertise it with posters in the outpatient waiting room. Maybe your hospital will be willing to facilitate getting a group like that going, if it doesn’t have one already.
Hi there. I’m a 43 year old man with Asperger’s syndrome with two children on the spectrum as well. I have been dealing with mental illness since my first psychotic break when I was 16 that was brought on by bullying at school. I have only been hospitalized once, and strangely enough, I found it very restful. All the extra stimulation of the world was cut out and I could just sit and work puzzles for a few days. I take mood stabilizers and get along pretty well most of the time. Mental illness is a big challenge in my life, but it’s not the end of the world.
My little girl began having severe anxiety issues in the first grade. She would have daily anxiety meltdowns and spent nearly a month staying in the front office every day before being assigned to a special education class. She is now doing quite well in the 6th grade with only a couple special classes.
In both of our cases, mental illness is part of our daily life that we have to deal with and then deal with the rest of life. As someone who has been there, I know it can be lived through with help, support, and by learning the right tools. As a parent, I know that I would gladly take all of her fears and problems onto myself if I could … but I can’t, and that is the worst and most helpless feeling. Please let this community help and support you with love and ideas so that you can help and support your little one.
John Mark McDonald
Scintor@aol.com
Hi, thank you so much for responding. My husband is on the spectrum, as well as, two of our three children. My mother, his father, some of our grandparents, siblings, nieces, great-nephews…are clearly on the sprectrum..even if not formally diagnosed. To be honest, I think my daughter would agree with you. Although she missed us very much while she was hospitalized, I think she enjoyed the structure of the hospital…and the absolute absence of her normal stressors. She was placed on additional meds and was monitored 24/7, and she was able to 100% focus on herself and her issues. They had some really great techniques for helping her identify her triggers and what to do about them. She has struggled with anxiety her entire life. Right now, she is fifteen, but she has struggled with anxiety all of her life. I had to pull her from school when she was only 6-7 and homeschool her…and put her in counseling therapy to help her. When she went back to school, she could only go in the special needs classroom for several months…where she would cry the skin off her cheeks…until she could slowly adapt to the regular classroom. We have a family history of depression and anxiety, but not the severity that would require a psychiatrist or hospitlaization. I have taken meds for years, and I have used the services of licensed therapists many times. I have never been ashamed to admit my weaknesses, and I have always believed in seeking help when it is needed. But, you are right when you say you would take the fear and problems yourself, rather than see your child suffer. We are facing each day with a good attitude, always moving forward. She is better, more stable, and expressing happiness. But, inside of me, I am filled with all sorts of feelings. I am too raw to even try to sort them out. I cannot even bear to look torward the future. I am trying to stay focused on ONE DAY AT A TIME!
Has anyone had experience with their autistic child in montessori classroom? Pros? Cons? The school where my son will go has a fantastic montessori program. My thoughts on why we would consider it are that he does really well with older children in the classroom and he is actually good at working independently (he just turned 4 in February.) We tried full inclusion in a non-montessori pre-k room and he had a hard time with it (diarrhea, chewing, various stress induced behavoriors.) I am not sure if it is the number of transitions or what it was. On the other side, is there not structure in the montessori room? I apologize, this is sort of a stream of consciousness question. Again, thoughts and experiences with autistic children and montessori schools. Thanks!
Hi, looking for advice, especially for anyone in Maryland about inclusion vs. private contained school at the middle school level. My daughter is 11, 5th grade. 75% mainstreamed at a Type 2 school that is imbedded in a public school. She needs quite a bit of support but is relatively successful in her mainstream class. She does have significant sensory and behavior needs (BIP in place). The county is telling us our only option is fully contained private autism school that we can’t even visit unless we agree to a more restrictive placement. We want what is best for our girl but we don’t know how to weigh the different factors in the decision and realize middle school is a whole new ball game. Anyone who has gone through this have advice??? Thanks in advance!
Forgive me for the very long ramble, but if I don’t get this out of my system I will just crawl into bed and sob uncontrollably and I can’t right now, my daughter needs me. This was a conversation I had with a friend:
Friend: What i hate even more than “everything happens for a reason” is “god never gives you more than you can handle.” ummm…then what exactly is suicide?
7:21pm
Me:
THANKYOU.
I have been told many times over both phrases when it came to the miscarriage I had many years ago and M’s diagnosis of autism and our on going challenges with it. I am especially sensitive to these phrases currently because M’s had a rough week last week and if today is a precursor to the week it’s gonna be another rough week.
Top that off with the fact that now B is going to night school five nights a week -leaving me to do all afterschool pick up, therapy sessions (which I had done for four years before he got laid off) but also tuck in, clean up, dinner and dishes, AND he is in class all day on Saturdays. I feel like if there is a god s/he/it is priming me for the fact that B will probably get into the apprenticeship program and be away from us for weeks or months at a time. But still, I so fucking did not ask for any of this and I am not feeling so special about myself that I think I can handle all this and be an effective, loving, supportive mother and wife sometimes.
Then I remind myself that many single parents do this for a lifetime, or at least a couple of decades and for us it may be as temporary as 3 years or a new way of life.
Anyway, so very sorry to unload on you, your topic of conversation just happen to be the victim of my mindset. I should also add that as a special needs parent one of the most damaging to the sense of self as a parent is the ongoing “parent-teacher-therapist” meetings -large and small. The ones like IEPs or the ones where you get pulled aside when signing your child out and hearing about the stuff that’s been going on, usually the challenging stuff, the self destructive stuff, the inappropriate behavior stuff, the social and academic delays, and somewhere buried in all that is the little positive thing but usually it gets totally overshadowed and you walk away feeling completely deflated and depressed that you can’t do more to help your child cope and wonder in complete mind-bogledness why this happens so frequently in school/class and not at home. This type of interaction being a day after day thing and all. And then you curse the universe for this sick and twisted situation because there’s nothing else to do and no one else to blame.
Ok, I’m done, sorry for being a debbie downer. Clearly I need a shrink and a drink. Heh.
Alexas Playc, which is part of Rady Childrens Hospital has lots of resources all over southern california and will put you in touch with someone who can help if they cannot directly
I love reading your blog and fb page. I went to gradeschool and high school with Tom Fields-Meyer, I think you’ll appreciate knowing him.
http://www.followingezra.com/
We live about two hours south of Santa Clarita. We have been dealing with our son’s Autism and the state of California for three years now. Send me an email and I will try to help the family in need.
thanks, ryan! i’m hoping to find someone right in the town so that they have a personal contact when they land 🙂
Hey Jess! Is there any chance that you can post a post about siblings of kids on the spectrum? Long story short have an 11 year old nt son who was an only until the twins came along 6 years later. He was also the first grandson on my side-and we have a big family. 2nd art infertility- Go figure- Got preggos by my now hubby before we got married..So funny my mom went with me to try on a wedding dresses, and she had to try on the dress after me to see if it would fit cause she had a pot belly that we both might have by the wedding day arrived-lol! She says to this day that we should have been on Yes to the Dress . Anyways, my buddy Fr. M. @ the hospital that I worked at that time was
instrumental in helping Markie and I have a Catholic wedding-being under the 6 month mark – Hey , If there is a will, there is a way! So my point? These siblings fight and make fake fart sounds that really set my little guy off to scream” Then he screams back then mommy tries to intervene, then they laugh- torment some more! Seriously, this shit happens when all kids are nt but throw PDD-NOS into the mix? Give me another IPA!!
https://adiaryofamom.wordpress.com/?s=spotlight+on+siblings&submit=Search 🙂
*sigh* … Edward was not only one of my favorite employees I had the pleasure of seeing every week at Kroger, but he gave me so much hope as to how personable my ASD son could be with a supportive family and employer. I’m so sad that Kroger made this decision to remove him from the store area he knew and loved for 17 years. It’s stories like these that knock the wind out of my sail … http://news.cincinnati.com/article/AB/20130515/NEWS01/305150004/Where-world-Edward-
I am a teacher and work with 8 students with special needs. We have end of year awards coming up this week and a parent contacted me asking that I be sure to give her autistic son an award because he has felt left out before. I have one student receiving an honor roll award and I have chosen 4 students for the other awards each classroom gives. Her son is not receiving one, quite frankly because he has not earned it. I feel that it is important for him to learn that he needs to put in the effort to be rewarded but he seems to be very spoiled at home. Thoughts or suggestions on how to deal with this?
I’ll be very interested in seeing how other respond to this. My gut reaction is that it’s simply not appropriate for any parent to ask for a merit / performance based award for their child and if he doesn’t deserve it, then giving him one would not only devalue the awards themselves but would do him a far-greater longer-term disservice than the short term satisfaction of winning.
However, I’m cautious because I don’t know the situation and I don’t know if he had the support that he’d need in order to earn an award.
But in general, if you’re only giving out four awards, then the only way that I think you’d be acting exclusionary would be if you didn’t consider him on an equal playing field with the rest of the class.
If you feel comfortable that he’s not at a disadvantage, I’d tell the parents that these are strictly performance based awards and you’re sure that, given the effort, he has a chance at one next year, as do all his peers.
Again, gut reaction, not well thought out. Hoping others will respond too!
I feel the same way, given the information we have. This came up in a different way last week at school. They 5th graders had been working and rehearsing for 5 weeks on their end of year talent show. The day of the show, an adult approached the director to see if there was something that a child who had been “left out” could do. There had been multiple flyers, emails, and lots of publicity about the 5 weeks of rehearsals. No child had been turned away, even if they didn’t come to the first rehearsals. A child who had come to the final rehearsal had even been allowed to join a group number. But the day of the show? These kids had stayed after school and worked hard. Now they got to leave class early and perform for the whole school. It seemed to us that saying yes would be, as Jess says, a “far-greater longer-term disservice than the short term” of being included.
I’m assuming that there is a system to reward hard work in your classroom and that he gets “caught being good” when he does work. If he has no motivation, I’d wonder if he needs a goal? Are there such things as goals for working hard? Just thinking off the top of my head. I’m also assuming that his progress reports and report cards have reflected that he isn’t performing to his potential. You didn’t say what age or what level the kids are, so that also could make a difference.
Good luck!
Hi, Jess. My dd is singing in a concert next week and the organizer is giving the money to Autism Speaks. I dislike the fear/disease model of Autism Speaks, and wonder if there is another charity I could suggest to her? The organizer doesn’t have a child on the spectrum, and doesn’t follow the autism community closely. AS is just the biggest, loudest name out there. My girl, who is on the spectrum, will be singing “Over the Rainbow” in the concert. 😀
I’m sitting here writing this and I don’t even know where to start. But I need some help and thought I would start here. Ive never asked for help like this before. I have a daughter with Autism, she is 9. She just finished 3rd grade. She was completely non verbal until age 4. In the past she has done SIB but grew out of the phase. Now we have something big happening. A month ago on May 10th, my daughter wandered outside in the wee hours of the morning. I didn’t even know she was gone. She just got up, and walked out the door only wearing pajama bottoms. We do have several safety measures in place. Shoe ID, door alarms, door knob covers, stop signs on every door from the Big Red Safety box campaign. She has eloped twice in the past but we caught her within minutes. This time baby girl just needed a walk I guess. She was found an hour later about a mile away. An elderly woman walked outside to get the morning paper, and found my precious baby sleeping on her front porch. Since my daughter had no way to tell the woman her name, address and phone number, she called police. They took an hour to respond to the house. 15 minutes later a reverse 911 call went out to everyone in our zip code asking for the publics help in finding the parent of a special needs child. There are not many special needs kids in the area and we live in a very rural area. When the street name was listed in the 911 call, everyone we knew showed up at the house to see if it was our daughter. Here’s the bad part, we only have a cellphone in our house. And it just happened to be on silent that morning. I woke up to find the school principal in my bedroom, waking me up to see where my daughter was. She was gone. And I didn’t even know it. I can’t tell you how hard it is to write that. We got in touch with the police to let me know that our daughter was missing. The state trooper was taking a statement from the woman who found her when they got my information. They showed up at my house, and I was interviewed for an hour before they would let me go get from the house. An hour. Finally they took me to her, where I found her sleeping as well, in the lady’s arms. She looked at me like I was scum. I thanked her and picked up my baby, where she woke up and said Hi Mommy, I want to go home. We arrived back at our house with the trooper to find CPS waiting for us. Where I was interviewed again while an another agent took care of child. I gave the trooper and CPS permission to search the home without a warrant. They took pictures of everything. Down to the dust on the mantle. 2 hours later without finding anything wrong with me and my home, they were gone. I didn’t sleep for 3 days straight after that. I was too scared. CPS advised us to install a different kind of alarm on the door, which we did. A week later CPS shows up unannounced with more questions. Apparently they’ve discovered I’m under the care of several doctors. I was diagnosed with Graves Disease in 2009 and had radiation in 2010. Are you abusing your meds, they asked. I have a thyroid disease, if I abuse it then I would die. I’m also on Anxiety meds. And depression meds. Are you abusing those? Does your medical condition prevent you from taking care of your kids? Can you get your meds so we can take pictures? Finally they said do you have any questions for us. Yes, are there resources out there to prevent this from happening again. *crickets* Do you know about Autism? *crickets* do you know how common this is? *crickets* do you know the statistics? *crickets* After I start rattling off the answers, they say we are learning about it now because of this case. They didn’t know the answer. The very same week this took place was the same week we lost 3 other children in this country who had Autism, wandered away and died. I was heart broken. This too could have been us. And the very people investigating us had no clue about Autism. Fast forward to today. I received a letter from the agent in charge that the case was being closed. And, I’m being charged with neglect. For the next 5 years I cannot work in a school, daycare, run a daycare, drive a school bus, or even volunteer at our kids schools. A background check will show my charges. I have 60 days to appeal it. Which I plan to do. But I don’t even know where to start this process? I could barely afford to get groceries this week because my husband who works for the Department of Defense, is furloughed. How can I afford an attorney? All these stories in the media never say what happens to us parents after something like this happens. Is this common? Is this standard operating procedures? I need help. I don’t know who to call. Where to start. I’m lost. Can anyone help me?
Hi Amber,
My heart is breaking for you.
Autism Speaks is the best known name in autism to the uninitiated. They have an autism response team. They might be able to point you in the right direction.
http://www.autismspeaks.org/family-services/autism-response-team
Don’t give up!
Margaret
I wish I could offer some concrete substantial help and that I could tell you where to turn. I can’t. I just wanted to let you know that I’m crying while reading your post and I’m in total admiration that you stood up to the people in your house and questioned them on why they didn’t know a damn thing about Autism. I am also stunned that this is how you’re being treated. I think you need to post what town and state you are in so that if anyone knows of any legal aid places in that area, they can point you in the right direction. I can’t imagine how you are feeling right now. My heart goes out to you.
Oh, honey, I am so sorry. What a nightmare. I don’t know where you live, but I live in Alabama. We have an agency that provides free legal support and representation of any family with disabilities, not limited to autism. I know other attorneys who provide free legal advice to parents dealing with situations like yours, because they have children on the spectrum, too. I have no idea what is available to you, but try a google search. You should have a chapter of the Autism Society of America in your state. They also have access to extensive resources (assuming you are in the United States). I know this is a horrible situation you are in. I know that ALL of us in the autism community understand. There is no way to predict what out babies will do. I stay at my ASD daughter’s side 24/7 right now. She is in a completely different situation from your daughter, but it is life and death. I live with fear and worry and regret and guilt. It is a horrible place to be. And, I do almost nothing to take care of the house. I would be horrified if someone took pictures in my house. I don’t have time for housework. I am too busy fighting for my daughter’s life. I hope you keep fighting. As hard as it is, this could be a breakthrough event for your area. People are ignorant. If people don’t live with autism, they just don’t understand. And they NEED to learn. You may need your community again in an emergency. I know you are scared, but turn that fear into your battle cry. Keep writing to us here. There are many who read, even if they don’t respond. You never know the resources you may find.
Hello there,
First of all, don’t give up!
Dealing with CPS can feel like you have the entire weight of the government against you,but this is an illusion. You have the opinions of a couple of overworked bureaucrats verses the reality of your life and love of your daughter.
CPS is most often filled with people who want to protect children at all costs. They have been given the authority to bypass the normal trial process in order to do this. This is a power that should only be used with great caution and wisdom that has been placed in the hands of overworked bureaucrats. This has often led to systematic abuse.
If I were you, I would insist on trial before a real judge and jury. First, this calls their bluff and puts it out of their judgement. There is a good chance that the charges will be dropped when they actually have to prove them. Be careful, they will try their hardest to get you to sign away your rights. You have the right to refuse to sign anything without the presence of a lawyer. They will try to get you to sign away the specific rights of a jury trial and a speedy trial. They will try to make it sound routine. Absolutely refuse these!
Another thing: If your husband is employed by the department of defense, you may be entitled to representation from the JAG. If this is not the case, by insisting on a jury trial, you are entitled to help from the public defender’s office. Also by insisting on a jury trial, the burden of proof is shifted from you to them. THEY have to PROVE that you were negligent. This is very different from them thinking that you were negligent, which is the caser now.
Third: Find someone who is calm and mature to help you put together you story of what happened and what your life is like with you daughter. Document what you have done to keep her from wandering. Have them help you put these things together so that you can present them in a calm and clear manner.
As I said, just by insisting on a jury trial which puts the burden of proof on them will most likely get them to drop everything. Use the system to your advantage.
John Mark McDonald
Scintor@aol.com
Thank you to those who have commented so far with suggestions. I filed an official appeal today, and left a message with the Autism Response Team with my local chapter of Autism Speaks. I am a member with the Baltimore Chapter since I live in Maryland. Also just wanted to clear up any confusion, I’m not being charged with neglect in the criminal system. Just with CPS. It will show up in a background check though. The woman who runs the appeals told me that a hearing will probably be in about 3 weeks. They are not taking my children from me and have stated that several times. I’m hoping to get some research done on wandering, the statistics, frequency, etc since this will be my main focus of the appeal. Any suggestions would be great, I will keep updating!
Today is one of those days I want off the roller coaster. My son just had a sensory meltdown and his dad got angry because his reaction was “not appropriate or helpful”.
My son isn’t “autistic enough” to qualify for help, or for his dad to acknowledge that he’s not just an overreacting child.
But when we have a moment like that where in two seconds he tips over into flapping and hitting his head and crying, I’m just so tired and lost and it breaks my heart.
I really get this Kimmerie. ((Hugs))
oh, honey. hugs.
Need a place to start…….another mom and I are ready to tackle a private company that employs many thousands, and its long-standing decision that their benefits do not need to cover occupational therapy for neurological disorders. This is a very very large, very profitable family-oriented company. Where do we start with this? A letter to our division’s (4000+) HR dept is what we’ve been told so far, but it seems so insignificant. But I remember reading here that it takes us ordinary people to get things started and accomplished, so I’d love to hear any and all advice and success stories! Encouragement needed too. Thank you all!!!!
I don’t know if it is a success story per se, but it was a brave move none the less. Have you seen the open letter Lou Melgarejo of Lou’s Land posted on his blog to his employer on this very topic? “An Open Letter to Comcast CEO Brian Roberts and NBCU CEO Steve Burke” might be a good place to start……
Thanks! I am familiar with Lou, and like his work, but don’t follow him regularly. A similar line of business as mine (peer pressure?), so I will look it up!
From a friend at the Shriver Center -/
I’ve got several success stories, and a template letter they can adapt. They can email our office at info@disabilityinfo.org and ask for the self-funded template letter.
I just wanted to give an update. I filed the appeal with CPS and my hearing will be on July 8th at 2:00pm. I called the Baltimore Chapter of Autism Speaks, and was told that legal advice cannot be given. They directed me to some wandering tips on their page. I’ve asked close friends and family to write letters on our behalf. And staff members from the school will be going with me to the hearing. Having been an Autism Mommy for 9 years now, I’ve gotten used to challenges in our life. But, I never expected any of this to happen. I feel like I’m standing at the bottom of the mountain and wondering if I can get to the top. I wish I had the amazing ability to wear my superhero cape at the moment. It’s hiding in the closet.
Amber, not sure if they can help since it’s you and not your child but maybe they can help in some way. I live down in AA county and I found them when researching placement options for my daughter who is entering middle school this fall. http://www.mdlclaw.org/. Good luck to you!!
Thank you very much, I will look into that in the morning :). Take Care!
I was wondering if there were any Asperger’s moms with Autistic boys. Scooter is 6 and I’m heading into muddy waters. DOAM has been my saving grace for the past two years.. the people on here an extension of that. I would just like to connect to someone who has walked (is walking) that path. Thanks 🙂
I’m hoping Jess will see this and write/post/tweet anything about this. I know many of us are military families and tricare recently released a new policy scheduled to take effect on July 25th about how and who will receive ABA. The new policy is ridiculous and will cut therapy for many military children with autism. And of course tricare is not being very forthcoming about the issue. Many families are just now finding out or do not even know. The policy takes effect at the end of the month yet it was just released less than a month ago. They are requiring testing every 6 months and if children do not show improvement, they can be denied for future services. This testing is not designed for that purpose. Services may also be limited to 2 years now unless there is some sort of waiver – not listed is how many hoops you have to jump through to get this waiver. Other changes to be made include increases costs, who can provide therapy/testing, etc… We need help and we need someone with a big voice to help. In the meantime, here are a few links. Please read, help, comment, anything. This is the link from AMFAS assessing the new policy: http://amfas.org/aba-assessment-letter Here is a sample letter to send to your senator/reprasentative. So far, 2 member have congress have written a sharp letter asking for answers but its not enough: http://amfas.org/aba-sample-letter and finally here is a petition on change.org: https://www.change.org/petitions/tricare-stop-tricare-from-autism-therapy-cutbacks
Thank you, January. I did tweet the info as soon as I saw the disastrous changes. I’m happy to see there’s a petition I can share as well. This is absolutely atrocious. Our service members and their families deserve so much better.
Thank you thank you thank you! Any little bit helps. I think it’s just still so unknown. I heard through a friend and haven’t even received an official letter from tricare yet! I’m furious and stunned that they would release a policy and not let anyone know about it and it takes effect in just 1 month after released. I have also heard that ABA agencies are just barely finding out as well and are not getting much information from Tricare.
My 6yr son, dx’d PDD but more likely Asperger’s (yeah I know, doesn’t exist anymore, whatever). Anyway… he’s a mix of sensory seeking and avoiding. Lately he has started chewing on things and putting dangerous things that he could choke on in his mouth. I need to find him something he can use, both at school and at home, that will not call attention to the behavior and yet give him something safe to use in place of putting small rubber toys in his mouth.
Any recommendations?
Thank you so much!
~Khrys.
Have you tried Chewy Tubes?
http://www.nationalautismresources.com/chewelry.html
Thanks, Jess. That’s the kind of thing I’m looking for, but I’m wondering if he’s still be able to choke on those? Still… I guess it would be less likely than what he’s using now. He’s chewing mostly in the back of his mouth (and yes, we’ve been to the DDS). So I kind of need something he can get to the back and yet still not choke on. The pencil toppers might work too if they’re long enough?
these i think will serve that purpose well and are made to avoid choking. if you scroll to the bottom of th epage, there are different shapes and options.
http://www.nationalautismresources.com/chew-tubes.html
Thank you so much! I’ve ordered one of those and also one of these: http://www.amazon.com/gp/product/B00AF3D6G2/ref=oh_details_o00_s00_i01?ie=UTF8&psc=1 though I do worry this one might be too small.
Thanks again, Jess!
Well, my daughter was diagnosed at 23 months. She is now 30 months old and my husband is struggling as much today as he was the day she was diagnosed. It doesn’t help that we have no support from his family. My mom, who would have been a big help, has stage 5 Alzheimer’s and had to move in with us about the same time my daughter was diagnosed. So, we are overwhelmed on several fronts. I struggle some days still but overall, I just see my beautiful girl and do my best to help her and love her unconditionally. I want so badly for him to have hope but he can’t seem to find it. He says it is because he is her dad and he is supposed to be able to make it better and he feels like he can’t. I’m not sure exactly what I’m asking but I guess I’d like to know if anyone else experienced this after dx and what if anything helped? I try to encourage him but he just gets upset and says that I am in denial about the struggles that she is facing and will continue to face.
Michelle, YOU ARE NOT ALONE. I hear this quandary far more than I wish. I’ve posted your comment on Diary’s FB page and will copy responses back here, but if you’re on FB, I hope you’ll come check out what people have to say. Digestion can take time, but it doesn’t mean that he won’t come around to a place of acceptance.
We must prepare for the future, but living in fear of it means missing out on living in and enjoying the now. xo
There are now 42 responses and counting on the FB page. Please let me know if you can see them!
Jess,
I can’t thank you enough for posting to Diary’s FB page. I am writing through tears as all these responses have been an answer to many prayers. I’ve been afraid of reaching out, feeling somehow ashamed of my inability to just keep it all together. This has shown me that I truly am not alone and that this community embraces everyone. Your vulnerability and honesty inspires me every day. Thank you to all Diary’s FB readers for taking the time to encourage and show love to me.
– Michelle
You are definitely not alone. I’m sure others have said it on the FB page but there are many of us who get it. I know there are dads who read these posts who can answer this too, but sometimes dads get into fix it mode and when they can’t, it’s very hard to see anything past that. You have so much on your plate coming from both sides.
I know in our house it took time for my husband to see the future and it took him participating in therapy sessions and IEP meetings and teacher meetings to understand it all. Keep reaching out to find your village, either online or in person. It’s there.
You can do this. He can do this.
It’s hard not to despair when you get a diagnosis. Your story is similar to mine in that I had a very difficult time with my daughter’s diagnosis. She was diagnosed with PDD-NOS when she was about 33 months old. We grieved and were so sad, but at the same time we went right into action: intensive speech therapy totaling 4x a day (private and school district), Floor Time therapy for the first year and a half. She’s 8.5 yo now. Presently she does ST 4x a week during school, 2x during the summer (private). She does OT, swimming, and gymnastics each 1x/wk. It’s a packed schedule, but she has benefited from it tremendously. I know not every can afford to do such intensive therapies that many times a week -financially and time wise it’s a HUGE commitment. But if you can secure any amount of services for your child it would be more beneficial.
When your child starts therapies you’ll see some progress and I think that might help your husband feel better about the diagnosis. I would also like to say that the benefits of getting professional help isn’t just for your child, but for yourself too. After the first year of my daughter’s diagnosis I finally let myself feel and I was not in a good place. I was seriously depressed and angry. I sought out a therapist for myself. For two years I went, and was able to figure out what and why I was so angry. It’s not just as simple as “I hurt because of my daughter’s diagnosis” it was deeper than that, I had fears that I tamped down, I felt rejected, etc. I worked through it all, and it was tough, but it was well worth it. I am in such a better place with her diagnosis and with myself now.
There’s so much more I can share with you but I don’t want to take up so much space here. Feel free to email me at artisgoodinyourlife (at) gmail (dot) com if you’d like.
Thank you so much for chronicaling your experience with your beautiful daughter. As a fairly young, single mom of a beautiful 14 month old its given me hope since I heard her early intervention team say the word “autism” the second time they visited. We are still in the very early stages of everything. I’m wondering if you can recommend any support groups online just to talk about all this? Any help would be greatly appreciated
I’m not sure which are the “best” support groups for you, but I find a lot of comfort and information on facebook. I follow Jess’s Diary page, and the Thinking Person’s Guide to Autism, as well as some others including local groups from my area. Another resource I have found to be incredibly valuable is to seek out autistic adult’s pages, such as Karla’s ASD page, or ThAutcast (run by Landon Bryce). There are many resources out there, but take it in small bites, a little at a time. One resource will lead to another. The best thing I have found is just to be able to talk to other moms who are going through the same things, but it can take some time to find them. Your EI team may be able to recommend some support groups in your area, or maybe (technically they are not officially allowed) be able to arrange a playdate for you. It can’t hurt to ask.
I’m not sure if this is the place to post this, but I need some information. My 4 year old ds was dx with PDD-NOS June 2012. I have been lucky with the school system, finding outside OT and ST, and qualifying for supplemental insurance from the state. I live on Cape Cod MA. In May of 2013 after evaluation in Boston my son’s dx was changed to Disorder of Childhood, NOS – which basically means there is something there but we’re not sure what, The school system has been amazing in keeping services even though we have this vague dx.
My family’s major source of emotional support are my in-laws and they are moving to FL in the fall. My husband would like to follow them down, but how will the services in FL measure to the services we have here in MA. I’ve read some horror stories. I would love to follow my in laws but am unwilling to sacrifice my son’s education especially since his current dx is so vague.
Where can I find accurate information on schools in FL. What have your experiences been? TIA.
Heather
Hi Heather-
I don’t live in Florida, but a good place to start would be with an Autism Speaks chapter (or other national organization with local chapters). If you can contact the local office, they may be able to provide you with contact information for providers in the area. You can usually get a good feel for things by talking directly with the providers. They may be able to recommend certain school districts over others as well. It is a big decision either way. Good luck.
Jess, you have been a real inspiration for me. I’ve read almost your entire blog over the last couple of weeks. Your perspective as a mom and an advocate is SO helpful for me and I thank you for your honesty and eloquence.
I have a couple of “disclosure challenge” questions that I hope I can get help and/or input with.
1. Telling the rest of the family. MY immediate family knows (big sis’s son has Aspergers and is almost 30). My husband’s do not. Funky family dynamics are the problem. My sis-in-law (SIL) has 3 boys and all are special needs; 1 is in a group home and doing spectacularly, the other 2 are at home and are integrated in school. I know that if I share that my boy is also autistic, my Mom-in-law will get depressed cause ALL her grandkids are on the spectrum (I’m pretty sure her brother and her husband are undiagnosed). My SIL will feel competetitve or something otherwise crazy (she was like that BEFORE she had kids and hasn’t changed). I so want to share with my mom-in-law but the dysfunction potential freaks me out.
2. Disclosure: to my son, at school / daycamp. We’ve been super lucky that our son has been “lightly brushed” by Autism (PPD-NOS at age 4, PPCD as prep for kinder). He’s integrated in school and starts 1st grade this fall. He’s attending YMCA summer camp/daycare and is doing well. Academically he’s fine, but socially – SIGH. He DOES have playmates (YAY!), BUT there is that super-awkwardness with kids his own age. Your stories of support from Brooke’s classmates, etc. have given me courage. I plan on talking with my hubby about introducing our boy to his different way of thinking, and then to his class after school has started. Any help in how to go about this would be GREATLY appreciated.
Thank you again – so much – for sharing your story. I’m reading Loud Hands now, and am planning on going back to school to get a certificate, then Masters on Education Psych/Autism Intervention. I think being armed with the internal and external perspective will be a HUGE help there as well. HUGS!
Hi,
My son was diagnosed with ASD 7 months ago when he was 2 years old. We had our first IEP meeting in June, so as you can probably guess, I am quite new to this.
My husband and I made quite a fuss at the IEP meeting and the principal became involved. We were told that most of the parents at that school didn’t even read the IEP and just signed it. We made numerous changes to the initial (cookie cutter) IEP and had 3 IEP meetings before agreeing to an IEP that expires in October, at which time we will review again.
Here are my questions: How do I make sure that the teachers are doing what they say they will? Should I ask for a daily note from them? Is that a reasonable request? My son is non-verbal, so he will not be able to tell us about activities in school.
Thank you in advance for your help!
Ah shit.
I didn’t even realize that this page was here before I spilled my guys on the “about” page. How did I miss this!? Yeesh.
I won’t repeat my question(s) but I will write my reply to what Jess so generously replied to me. Hopefully it will be enough without the back story:
Jess, thank you. I appreciate you taking the time to really think about and answer in length my question(s). It can be very tough trying to figure out how to parent properly, especially when you realize you were likely doing it all wrong for a very long time. I really want to parent my kids with as much understanding and patience as possible. I hate that those traits don’t come easily to me, but I suppose that is in part due to my own ASD traits. And if I am going to learn to accept and adore my daughter’s autism, then I had better figure out a way to accept and make positive my ASD traits.
Honestly, sometimes I just need to say what is actually happening in my life with my kids that the ‘World’ doesn’t get to see and that my NT friends with NT kids don’t and can’t “get”. I need to have a momfriend who not only “gets it” but also has a lot more experience with it than me to tell me her suggestions, or at the very least her experiences.
It matters to me very much that you care enough to try to answer this crazy thought rant I had. Lol.
I did not experience ASD from the beginning of my daughter’s life and learn to adapt to it and my own ASD because I had no idea what we were living and experiencing was ASD in both of us. I just thought she was “more” and she was “challenging” – even “difficult” and that I was just a big asshole and that I always had been just a big asshole.
Hindsight is twenty twenty, but it’s hard to teach an old dog new tricks and I have been parenting in a somewhat backwards way for about 8 years now trying to figure out why my first kid (NT) was so “good” and my second kid (AS) was “not”. Trying to figure out what I did wrong or if I had just been lucky the first time around.
I’m being brutally honest here – and I’ll admit that it is hard to see these words written down: “not good”, “what I did wrong”. Because I know my daughter is awesome. And unfortunately for me it took a diagnosis of her ASD for me to recognize that all the things I accepted as difficult and challenging were/are really neat and interesting and great.
It didn’t help that my NT friends would openly discuss my kid as a challenge or laugh half heartedly about being “stuck with her”. I was easily embarrassed and tried my hardest to change what they saw as bad behaviour in her instead of trying my hardest to have them understand it actually wasn’t/isn’t bad behaviour.
I am slowly training myself. And I will take your kind advice to heart. Thank you.
Prevention is better than the cure, and you’re right – when in meltdown phase – there ain’t no cure for that.
Signed:
Exhausted and grateful.
We have an opportunity to participate in a study for an oxytocin nasal spray. It requires two blood draws and my six year old freaks out about shots/needles. I’m just wondering if the potential help from the spray is worth putting her through the blood draws.
Thanks.
My name is Cheyenne and I’m a senior in high school. I may be in the wrong place for this, but I have a good feeling this is perfect! I’m in the process of writing a play about autism. Not a cheesy, after-school special kind of play, but one with a story line and developed plot.
The idea initially came to me in search of something that would have true-to-life meaning and impact on an audience. I accidentally stumbled upon this page and saw how countless people were supporting each other through this site and loved it instantly.
Currently, my play is focusing on a young boy who has autism. I’m writing situations of his actual life, then juxtaposing it with scenes that are in his mind; almost like he has a separate world that he’s thought up and becomes his safe reality. I’m showing his progression as a child to a teen and in his childhood, he fully believes he’s a superhero. This idea is just the framework that I’m sure will change, but I sure could use some help. I’m researching as much as I can about autism, but I don’t think I could get any better information than that of those who live it every day. What I’m looking for, is advice of all kinds. I’m looking for stories, testimonies, quotes, real, heartbreaking emotions, characteristics and mannerisms, and finally, stories of hope. Really, anything you could offer would be greatly appreciated and I’d love to collaborate and share the final product with you. I’m not sure how I’d like to integrate your responses, as that will depend on the kinds I get.
In the least, I’m looking for one word descriptions of autism or people you know that are autistic, (or you yourself). If you’re willing to let me use your name, (or nickname), and could comment a word, I love to use you in my play.
If you’ve read through all this, I love you for it. Thank you. Please please please help me write this very important play to show the world that autism isn’t debilitating, but a superpower to these kids.
You’re fabulous.
~Chey
Hi Jess, my son has pdd-nos, but very strong language and academics (so far). He’s “easy” – he doesn’t have meltdowns at home; hasn’t really had them at school. Hubby mostly sees him at home. I see him more in the world, playing with peers and such – so I see the “difference”. I know, as hubby says, we’re lucky because son is “minorly” affected. We had a conversation last night, where I told him I started blogging. I’ve been looking into going back to school in the field of Autism Intervention (at a school where they are more maximization focused).
Hubby wonders if my engagement with autism and getting into advocacy for him – because son is “easy” – is me “overly-mothering” him to compensate for an exceedingly selfish/underly mothering experience from my own mom (pop-psyche 🙂 I like to snuggle with my 6 year old DS and I have stayed with him till he falls asleep (DS likes this) – I plan on “weaning” as we get through September, but this is a peeve for hubby. He also has the “I probably would have been put on the spectrum, it’s overdiagnosed, the machine of the health care world creates the umbrella and has to keep itself going” attitude – he’s cynical by nature, and may be partially right, but he’s also not engaged in the same way with Autism that I am. And once in a while son does something “off” that makes hubby go “that’s it, isn’t it”, but it’s pretty infrequent.
I’m kind of irked because of this conversation from yesterday. I don’t know how to clarify things for him. I don’t want to have to justify myself. Son IS easy, IS hardly symptomatic at home. I just feel trapped a bit by this. I don’t know if you have time to email me re. this, but if you can, or if anyone else has dealt with this – wotedge@gmail.com.
Thanks!
Having a home environment that is friendly to autistic challenges can make a big difference in how easy or hard he is seen to be. You really can’t judge this until he is taken out of a friendly environment. I sat this as a middle aged man with Asperger’s and the father of two kids on the spectrum as well. While growing up, my home was a very easy environment because autistic traits run in both sides of my family. It wasn’t until I started spending time away from home that I started feeling like there was something wrong with me, It was similar with my children. They had autistic traits from birth, but I never felt like there was something problematic for them until they started spending time away from home.
John Mark McDonald
Scintor@aol.com
Thanks very much for that insight, John!
Hi there,
I truly hate to say this… and please disregard this response if it is not helpful… but while I was reading your post I thought: This is me. This is my story. This is so strange because I could have written this exact post. Six years ago.
My husband (at the time) thought I too was overly motherly, that I babied my son because I laid with him in bed at night until he fell asleep. (By the way, six years ago, my son was also six years old)… That he seemed “fine” and he had a “hard time” delineating where Asperger’s (my son’s dx) ended and being “spoiled and babied” began.
What hurtfully piercing, seemingly benign words.
Sometimes I feel like a fraud here because my son does seem neurotypical most times… except when he doesn’t… like at night – when he wanders the house full of anxiety because he can’t sleep – and I think back to when he was six years old and I used to lay next to him at night (the only time he would be physically close to me)… and I think of my husband saying I was “babying” him …
And yes, I too, “weaned” him off of that. And gave him independence and now, melatonin (which does help)…
And I tried to teach my husband about schedules and routine, and stims that are disguised as “neurotypical quirkiness” as opposed to outwardly autistic symptoms… And sometimes it helped… except when it didn’t. When “meltdowns” did occur – but not the metldowns you see in movies – no, in our world a meltdown came in the form of fierce stubborn disregard for “authority” in an absolute refusal to eat any new food, or go out of the house for anything other than school if it was planned two days in advance etc — and challenging his authority, was something my husband was not keen on. It definitely peeved him.
By the way, I live in a world where I am constantly trying to convince everyone around me that my son needs me and them in ways that are different than typical kids – including the school psychologists — he currently has no IEP because he is so “high functioning” they removed his asperger’s dx and replaced it with “learning disorder”. So the smartest 12 year old I know, the 12 year old who when friends come by to visit he casually asks them what they think about bombing Syria — if he were in public school, would be labeled with a learning disorder – f’ing absurd. So, thousands of dollars later, after having him privately assessed, I know what his NEEDS are regardless of a label and he goes to a small, private school and he is doing great there. But that required me to seriously come to terms with the fact that world was not seeing what my son needed. I had to trust the voice in my own heart saying these state funded “experts” are dead wrong…
and so is my “husband”.
To have that scowling doubt… in my own bedroom, in my own home… to have a disdainful eye cast upon me while I’m only doing all that I can for my dear son…
was so much more damaging than I could even comprehend at the time… I chalked it up to my husband wanting to make my son into a “man” and being a father figure that I THOUGHT he so desperately needed.
At the end of the day, all these years later, after our marriage fell apart for other reasons… I started to realize that all of that disdain and denial had so much more to do with his issues with himself than with “the system” or my son…
And by the way, those issues were: Gross selfishness, narcissism and obsession with my attention (that when being taken away at bedtime by snuggling with my son turned into a “peeve” for him).
I guess my point in writing this to you this morning is that I beg you to take a look at the bigger picture of who this man is and where these peeves are coming from before you begin to wean your dear little son off of anything.
Six years later, I would give anything in my power to go back in time and lay with him in bed one more time.
Now he’s 12. And his “quirkiness” brings upon a whole new world of challenges that I have no idea how to conquer…
But six… six years old… is a precious, precious time and NO ONE should make you feel bad about the way you spend time with your baby – neurotypical or not.
I send this to you with the best intentions…
In terms of writing a blog – there are so many of us out here, who only have our “toes in the shallow end of the pool” of autism — (have you read that blog post? Either Jess wrote it or maybe MomNOS wrote it? Please seek it out, reading it, seriously cleared the clouds away for me…)
I think a blog from that POV would be wonderful to read.
Best of luck to you,
Amanda
“But six… six years old… is a precious, precious time and NO ONE should make you feel bad about the way you spend time with your baby – neurotypical or not.” Hey…Amanda. Word. That is all.
🙂
Thanks Amanda. Huges hugs to you for all you’ve gone through. I wrote a long “replay to all” response. I really appreciate your kind words! My blog is only a few days old, so I love new readers (I have at least 1 so far besides myself LOL). walkinontheedge.wordpress.com 🙂
Just a happy update – we found a good-night routine that works really well, and DS is falling asleep on his own!! Read, tickle, lights off/dreamlight on (he loves it 🙂 Much snuggling, and a short song (same one, every time, 3-4 times, with snuggling. Then good night/see you in the morning. I guess we were both finally ready and I’m proud of both of us.
Bless you.. My story reads as both of yours.. The issues lie within the father yet make the path we try to travel that much more precarious. I left my marriage for the good reasons already listed and can give my son the freedom, space, place of no pressure to be his awesome 6 yr old as he discovers how the world works on his own terms. I am my son’s pit bull, his champion.. I hope that in the new relationship my ex now has with his son has provided him with the insight he was so badly lacking before. I think he is still too rigid and pushing the ‘making a man out of him’ agenda.. And I can only guide him from a distance but at least now he listens more than he ever did and it is better than it was.
Nicky, bless you for having the courage to walk away from something unhealthy. I just know how scary that is. More power to you.
Hugs!
Hey PK,
I searched the blog post out for you. It was written by The Adventures of Boy Wonder, but it’s connected to another post written by Jess… Just a wonderful perspective that helped me so much, that I thought I’d share..
—-
The Deep End of the Pool
We swim in the deep end of the autism pool. Maybe not the deepest murkiest part but we are in pretty deep. Yes Boy Wonder is not very verbal. His social skills and play skills fairly non existent. He struggles to express his most basic wants and needs while we struggle to understand him.
But our struggles are just that. OUR struggles not your struggles. While your struggles are in the shallower end pool, they are no less challenging just different.
I’ve never once wished that Boy Wonder was less autistic, had HFA or Asperger’s. I’ve wished he didn’t have autism at all. I wish no parent ever had to hear,”Your child has autism.”
I empathize with your struggles and I celebrate your child’s victories. But never once have I thought that your child has it easier then mine. I just think their challenges are different.
I don’t want more company down in the deep end of the pool. It’s crowded enough down here.
Posted by Boy Wonder’s Mom at 8:02 AM
Thanks to you moms! I think hubby comes less from a place of “be a man” (although there is that cultural fear of mama’s boy I’m sure), and more of a kind of cluelessness, and a tendency to be more clinical/logical than emotional.
We DO have just a toe in the pool, at least currently. And hubby doesn’t SEE because he’s working/studying. He spends quality time with our son and they love each other tons. But dad doesn’t see him very often at the play place every week and how son doesn’t mesh with his peers, doesn’t “get” the rough play, etc. He just sees our sweet, thoughtful, articulate, well-behaved (usually) son. – Until he sees a co-worker talking to son in that “pleased to meet you” way and son’s eye contact SO OBVIOUSLY going AWAY from the person’s face (which he doesn’t usually do in an obvious way) that hubby says – is that a symptom? Or when son does something he’s not supposed to, gets a stern reprimand, and son gets SUPER sad/retreats away from us and kind of hides and hubby asks – is that normal? Incidents that are spaced so far apart that they disappear in dad’s memory, but I have them practically date stamped because in my mind I’m saying “SEE? There it is!”.
He sees the kind-of-damaging helicoptor mom thing in other parts of our family, and the more extreme autism manifestation in other parts of our family, and looks through that lense. He sees me through the lense of knowing my mother, who is a REAL piece of work in terms of selfishness, and knowing that I don’t want to be that so might be swinging too far the other way. And I might be, but I’m aware of it so hopefully not too far 🙂
So I’m going to cut hubby some slack. But I wonder how much of how well our son is doing is in part because of my “over-mommying”? I know my behavior won’t “fix” him (I love who he is), and it doesn’t change son’s brain. But if I am calm, if I understand and interpret the world for him to help him “get” how the world works, if my presence settles him – what if that is part of why he is “easy”? Take away that safe place and then what happens?
I want my kiddo to be independent, to fall asleep on his own, to be out of sleep pants this year, etc. I don’t want to be the crazy opposite of my mom. I also want hubby to SEE what is there. To see that support isn’t overprotecting or babying. Just because the support wasn’t there when you were a kid and you turned out fine, just because sometimes things are overdiagnosed, doesn’t mean our reality isn’t real.
And I wonder if a part of it is that if he sees the REAL, he’ll be in that place that dad’s find really hard where you want to fix the real and make things be all the way OK, and you can’t . Maybe that’s a place he’s afraid to be…
PK, I wanted to respond to this portion of your last comment.
“I wonder how much of how well our son is doing is in part because of my “over-mommying”? I know my behavior won’t “fix” him (I love who he is), and it doesn’t change son’s brain. But if I am calm, if I understand and interpret the world for him to help him “get” how the world works, if my presence settles him – what if that is part of why he is “easy”? Take away that safe place and then what happens?”
From the very beginning, my first child was different. I could never put my finger on it, but I knew. I poured all my effort into easing her way in the world. When she was only two months old, I remember a well-meaning SIL commenting that my life didnt have to end just because I had a baby. I ignored her, and kept following my instincts. My own mother told me to let her cry more, and that it was good for her newborn lungs. And I said that she did not understand how wildly out of control my girl could get….that I had to get her off the cliff as quickly as possible…if I did not, she would cry for the next three hours, until she lost her tiny voice. I hovered and protected and intervened. She was super smart, quick to learn, but terribly anxious. She was inventive and imaginative and creative. But different. She seemed at a loss socially and was emotionally immature and sensory-defensive. Even in infancy, she avoided physical affection. Even seeing pediatric neurologists, speech therapists, and pediatrician a regularly, not one person ever mentioned autism. We moved twice during her elementary years. She continued to be smart and well-behaved and socially-emotionally immature. She went under the radar until middle school. Her awkwardness stood out more and more as her peers became interested in boys, make-up, fashion, and the social structure. And like a smoldering volcano, her anxiety was building. I was still watching her and guarding her and intervening, but I somehow missed how severely depressed she was becoming. I think I was getting tired of always trying to make the world work for her. I suppose I thought that she would eventually outgrow her awkwardness and become a typical teen. I could not have been more wrong. It took a family trauma to send us to a therapist, seeking help for PTSD for all of us. This complete stranger spent a short time with my daughter and said, ” Have you ever heard of Asperger’s Syndrome?” I was dumbfounded. Suddenly, there IT was…the common denominator…the pathway to truly understanding and helping my daughter. She was fourteen. How on earth had we missed this? And, then, there was the domino effect of realizing that my husband was clearly on the spectrum, as well as, his father and my mother, and our youngest daughter, too. It was as if a fog had lifted off of our lives. The answers to a thousand questions were there for the taking. All of this to say, YES. Your style of parenting is very much helping your son thrive. When we listen to our gut and follow our instincts, we improve the lives of our children. I was never swayed by what others thought or said. And, I want you to stay vigilant. Our Aspie kids can do very well in the elementary years, but the transition to teenager is fraught with chanllenges. Physical body changes, hormone changes, social expectation changes, more pressure and independence at school …and that is when that underlying anxiety and depression can rear their ugly heads. It changed everything for my daughter. Public school became a place of torment. Eventually, her issues became life-threatening and she was hospitalized for a short time. But, she responded well to treatment and some new meds. AND, she no longer goes to public school. I will do whatever is necessary to keep my daughter well and to support her dreams. I truly do not care what anyone else thinks of our decisions. She is alive and healing. Her siblings have weathered the storm by her side. We are all stronger for what we have been through. It has been very, very difficult for my husband, even though he himself is in the spectrum. He just cannot understand the emotional aspects she deals with. But, he accepts her. He loves her. He is devoted to providing for her. Your husband may see things more clearly as your son grows. And you KEEP listening to your gut instincts. You may have to seek outside help at some point. Do not be ashamed. If it weren’t for an entire team of talented professionals, I would not have my dear daughter, who will celebrate her 16th birthday in a few days. Buy it took ME to put that team together. It took MY determination, MY desire for information, MY dedication to her well-being, and my willingness to coordinate the efforts of many people in many different places. It also took a huge amount of faith in God. She still struggles, and I watch her like a hawk. If I were to give you one piece of advice, start reading ahead about adolescent Aspies…so you will be more prepared than I was. And, tell your husband, I sleep with each of my Aspie daughters! I stay with whichever daughter is struggling the most. Sometimes, we all three have to join together. It is EXTREMELY common for ASD kids to have sleep issues…going to sleep, staying asleep, dealing with nightmares or insomnia. We all deal with it in Our own ways. At our house, we all sleep better if I am close by. So, sorry if this was overwhelming, but it just really important to tell you that you are in the right track and to keep listening to your instincts!
thanks for the love,
Jersey
Jersey, you will never know how your post came to me on one of the darkest days, and how reading it, truly turned things around for me. So much so that I have never forgotten it! I am sorry I couldn’t remember it was you who had written it right off the bat. Thank you for taking the time to share it.
… I need help with school , nasty notes , phone calls , I E P s…
Autumn has just started Kindergarten she has Myotonic Muscular Distrophy , and autisum non-verbal…cant write doesnt follow rules the way school wants her to , at times she covers her ears and lets out a yell, she is on a feeding tube and has threapy for food issues and aid to help her at lunch , they get upset if she doesnt eat what I have sent..I have taught over and over how to do things and they call and complain about her. Please send help my way .
Thank you
Lori Johnson
Hi Lori-
I’m not sure what I can do to help, but I’m here if you need to vent. Is your daughter in a public school? It sounds like she may be eligible for a lot more help than it sounds like she is getting… Maybe we can figure something out together. Hang in there.
Email me if you like. superbiologybabe@hotmail.com.
I’m at a family party as we speak. There are about 7 boys here around my son’s age, 9ish. They are outside playing football and my son is in here with the adults eating bread and butter and watching Max and Ruby. He’s happy as can be, greets all the boys as they walk by and let’s them know where the football game is. He takes another bite of bread and watches Ruby’s Surprise Party for the 100th time. Did I mention he’s happy? I’m trying to be ok with this. No one is commenting. Maybe they get it enough to not comment. Maybe the boys are at the age where they don’t give a shit and its not worth making fun of because there’s a game going on. Yes I did mention he’s happy and that I’m REALLY trying to be ok with this. I’m trying to follow the leader.
He’s happy. Good job, Mama. Breathe. He’s happy.
Yep, I have been in this place many times. Our kids are fine, but our unmet expectations are crawling all over us. My oldest on the spectrum is almost sixteen and a girl. I took her to a football game last night, to watch her younger brother march in the band. I was surrounded by teenagers, even younger, elementary aged kids, engaging in full-on social behavior. What was my teen doing? She was drawing in her sketch pad, dragons and anime characters and totally oblivious to the game and the social dynamic. Remarkably, despite the heat and uncomfortable concrete bleachers, surrounded by people and Mosquitos, she never had any sensory complaints. She was in her own little bubble and quite content. There was a time that I would have thought SHE would have been in the band or running around with her peers at a football game. But, no, she is happily being homeschooled and does not care one bit about the social behavior of her peers. Like you, I try to follow her lead.
Jess for Sohailah, feedback appreciated ….
I know I don’t know you – and I’m sure you’re busy, but I have a couple of questions, if you wouldn’t mind? I teach 5th/6th grade, and we have been having Honor Choir Auditions. I have had two children with autism audition and they both got perfect scores. Out of all 175 kids who tried out, only 7 achieved this. My question is, do you think I will offend their parents if I ask them if their child can handle the pressure of the Choir? It has two day a week rehearsals and we will have several performances, some of which are competitive. I don’t want these two boys to have a bad anxiety experience with Choir and then hate singing and everything related to it, but I also see their excellence and want to encourage it. I am new to the school and the school is new, and I don’t wan to offend or insult parents with my questions. Any thoughts as someone who has been navigating this path for a while?
Thanks so much for your time.
P.S. I have created a second choir, Glee Club, that has a lot less pressure with some performances but half the rehearsal time and none of the competition stress.
As a parent of two high-functioning autistic girls, I would love to have a teacher approach me and invite me to share my thoughts. I realize that not everyone is the same, though. My oldest was in middle school band, and as much as she loved playing, she did get really stressed with performances and the chaos in the daily rehearaals (and all the noise). We have a very competitive marching band, and that pressure for excellence and competition is fostered right away in middle school. I am not sure if she would have survived high school band. We will never know, because she had to start home schooling. It all became too much for her. But that is just MY daughter. I know that there are others in the band who are ASD. And they do fine, and they do NOT want to talk about it. I think it really depends on the student and the parents. I would talk to the principal or teachers or any special needs team members and get their input, too. They might tell you that the family is very approachable. Personally, if the students had the guts to try out, and if they performed so well in the audition, I think it is only fair to give them the same opportunity as anyone else. My husband and I are on the spectrum, and we both thrived in our high school music programs. Just my opinion!
hi there, so we’re having a bit of an issue and i would really appreciate any guidance. we have a boy who just turned 8 this week. he has asperger’s and is doing really well, most of the time. he has stopped having meltdowns almost completely and getting so, so good at expressing his needs before he gets overwhelmed. the problem we’ve been having lately is that when he does get overwhelmed while he’s stopped having a tantrum, he has started trying to hit and bite anyone that tries to get near him. we had a couple of incidents over the summer and now it’s happened at school. he didn’t bite his teacher but he tried to and he did hit her. we’re really worried about this not only because of the possibility of hurting others but also that he is such a loving, affectionate and non-aggressive kid, i’m worried about the issues this is going to create in school. i’m worried that people are going to judge him on these outbursts and not really get to see how great of a kid he is.
have any of you been here? do you have any thoughts on what we can do? it seems to be a gut reaction he has when he loses it and he’s not intentionally trying to hurt people- kind of fight or flight reaction. but i can’t figure out what triggers it.
i’m really at a loss here
i’m hoping that you get some good responses here, but no matter what please know that you are not alone. so many friends come to me to talk about this. it’s a huge issue for so many of our kids, but one that is very difficult to talk about publicly for a host of reasons.
we need to ensure that those who work with our kids understand that violent outbursts are a reaction to some kind of stimulus – internal or external, NOT a violent nature, and that our job is to help determine what that stimulus is in order to help to avoid it or mitigate its effects.
hugs to you and your kiddo.
thank you. i do need to hear that we’re not alone. it can be so hard when you see how awesome and amazing and brilliant your child is but the rest of the world only sees the odd tics and outbursts.
One thing that helped with my son was to always tell him what I wanted him to do rather that what I didn’t want him to do. My son was always exceptionally large and strong, so I was always reminding him to be gentle. If it is a task, I sometimes guided his hands through it so that he could feel the appropriate amount of force. I also stressed that his strength was to be used to protect. The last thing is if these outbursts seem to be truly random, you may need to check if they are a type of seizure. Seizures are a very common co-morbid for the spectrum and needs to be ruled out.
John Mark McDonald
Scintor@aol.com
thank you John, for taking time to respond. What I’m finding to be hard is that he has never attempted to bite me and has only very rarely tried to hit me and when he did try that, it was a very halfhearted attempt (if that makes any sense). This seems to be the result of others not really knowing how to engage with him.
I do appreciate the concern for seizures but I don’t think that’s the case here. It is worth investigating though. thank you again
Jodi,
I have a seven year old son dx aspergers who has had issues around physical aggression on and off as far back as I can recall. While it is hard to know what is going on with your son not knowing you, him, or the situation better, I am happy to share what I have learned from our experiences. If you would like to talk further, I am sure Jess would be happy to forward my contact info to you.
1. Separate this action from your son. I know that seems obvious but it is one of the most important pieces of advice I can give you. When someone is harming you physically the feelings around it can get murky. This behavior is your son communicating something the best he can in the moment IT IS NOT WHO HE IS. Be sure everyone around him knows that. Be sure you always know that, because you will have to always be on his side when other’s won’t want to be. He is not a violent kid. He is not an aggressive kid. This is not just something autistic kids do. He is a child who is doing the best he can in that moment to communicate his needs.
2. In the moment. This is, in our experience, always a panic response. When it is happening, it is already too late to have a discussion about it. If he is lashing out when people get near then it sounds like he needs space. Find a way to give him space, quiet, whatever it may be until he feels calm again. Do not try to have logical discussions with him in the moment about how hurting people is not ok. If he is in panic (and it may or may not look like panic to you and I) but if he is in panic he can not hear or process what you are saying and it adds to the panic to have more words thrown at you. Find a way to give him the space he needs to calm down with no other agenda in that moment.
3. Educate yourself as much as you can. If you have not had the chance to read the words of autistic adults who describe what it feels like to be in these panic situations please take the time to do so. It has been imperative for me as I do not experience the world in the same way as my son and I am a better parent to him and advocate for him when I have a vision of what he may be experiencing. There is a good discussion going on around this issue currently here http://emmashopebook.com/2013/09/11/what-others-had-to-say-love-overwhelm-violence/ and here http://emmashopebook.com/2013/09/12/the-conversation-continues/.
4. Involve him in researching the cause. When the incident is over begin your search for reasons it happened. We are lucky that my son is very verbal and fairly in touch with his feelings. I can always ask him about it later. He does not like to talk about it. He is embarrassed about what happened. Part of teaching with him around this is that he has to be part of the solution. We discuss what happened without shaming him or telling him how bad it was. Believe me he knows. We ask him to identify what he believes happened and how he felt about it. It often is not the same story as the adults present would give. This is okay. It is his reality and our solutions to prevent this have to start with his reality. Telling him the way he experiences the situation was wrong does nothing to help him work through the feelings in the future and just adds to the failure and shame he already feels around it.
5. So what’s the cause? For my son it is usually either high anxiety, sensory issues, difficulty processing what is being asked/happening for executive function reasons, or sometimes a combination of all of these things. Sometimes this will look like a full panic meltdown with lashing out as one might expect, but sometimes (remember I said it may not look like panic to you and I) it can seem to come from no where to those around. A simple example is my son got in trouble once for spitting in a teacher’s face once. He explained later that her breath smelled really bad. He has a very sensitive sense of smell and smells I may not even notice will make him gag and throw up. The teacher in his face made him feel sick, he panicked. In the moment spitting in her face was the most efficient way to make the smell stop. It worked, she backed up. So, you are likely on to the right answer when you say he is in fight or flight. Explore. Ask him. Do not just let the school report a list of your son’s “bad behaviors” to you. The “behaviors” are nothing more than a sign something is wrong. Be sure they are telling you what happened before. If you are not happy with the detail they give you ask the school to do a Functional Behavioral Assessment. This is your right as a parent. If you do not like the one they do you have the right to request it be redone by someone of your choosing.
6. What can I do? First and foremost keep telling your boy how much you love him because I guarantee he feels terrible about himself. Next, one of the biggest requirements we have with our son at school is “No power struggles” This is a tuff one because it is a paradigm shift from the adult/child model we all follow of “do as I say because I said so”. But, we find that if it is time to go to gym class then my son really wants to go to gym because..well…..it’s time to go to gym class and that is what he does, it’s on the schedule. So if he balks at going, there is a reason. To cajole him into going anyway and get into a power struggle with him results in him feeling backed into a corner and panicking over being pushed into something he is not ready for. Instead he needs to be given the leeway to not go or go when he is ready. While this sounds to many like we are teaching him that he runs the show and his every whim will be indulged the truth is that he doesn’t take advantage of it. He will take a few minutes extra to gather himself and feel calm and then join the rest of the class in gym. He has never once used this as a way to do whatever he wants.
Big hugs to you, mama, I hope there is something here that can be of use to you.
so i just got off the phone with the school again today. out of the blue we had another outburst of violence. this is after months of wonderful reports. your advice is still good to hear and i’m reading it again and again and sharing it with my husband. i wish it was easier to get the school to be on board. i want to go back and see what happened to push him to the point of such a reaction and make them see that he was reacting to feeling completely out of control.
i’m finding that these moments are the hardest, when things have been amazing to then be smacked down. to be hit with worry and fear and your heart hurts because you know that this wasn’t all on him. you hurt because you weren’t there to mediate the situation and you know that this stressed him out and that he tried to do things to fix the situation but that they weren’t the “right” things and just landed him in bigger trouble. and i feel powerless. that no matter what i do, people are still going to push him beyond his limits (and not in a good way)
Does anyone have suggestions re. 1st grade and helping your spectrum kiddo to do the work? My boy will be 6-1/2 next month, is in an inclusive classroom. He has strong language/academic skills, but weaker social skills.
We’re having his 1st ARD of the year tomorrow and I had a chance to talk with his OT (she is at another school and won’t be there tomorrow – the rest of the team will). His big challenge right now is finishing his work in class, and checking out attention-wise. He CAN do the work (when he does it, he does it very well), but he just seems to drift away from it after starting it. (Example, writing a 3 word sentence. He needs direction to write the 2nd and 3rd word. He CAN do it, but he doesn’t.) He’s the last kid to move when it’s time for circle time, last kid to get stuff and do the next thing – he’s not cluing in to what the teacher is saying, and he’s doing things when he sees the class doing them.
He’s a sensory-SEEKER, and as far as we know he doesn’t have sensitivities (none obvious, anyway). Everyone seems to be onboard re. supporting my guy and finding his “sweet spot” re. how he learns, etc. But I really want to help as much as I can.
We’re not sure how much is behavioral vs. sensory – sometimes they get tangled up with each other. The OT and Teacher are working on a sensory diet for him (but have to balance filling sensory needs vs. accidentally rewarding something that’s behavioral and not sensory.
Part of the problem is I don’t see the behaviors at home – he’s home to play, etc. He does his homework with very little prodding. It’s on the computer so he can concentrate on it, and he enjoys it, not like paper/writing work in school. We did work on writing over the summer, just a few times each week. It wasn’t his favorite, but he did it, and he improved.
Home is just not like school, atmosphere wise. I KNOW it’s just 1st grade, but if I can help him understand the what, and the why and find the motivator to help get what he needs to get done happening at school, that would be great. Following directions and getting your work done is the cornerstone of school at this point, so I’m having my little mommy freak-out.
Thanks!
Hi PK-
I think we’re in a similar situation over here. My middle daughter is also in first grade, in a regular classroom. While she is very smart, keeping on task and following multistep directions are a real challenge. We have a TSS (a one-on-one aide) who goes to school with her to prompt her and help her follow along with the rest of the class. It works well for her. It keeps her in the class and gives her the assistance she needs. But she is tired by the end of the day. It seems she has considerably more difficulty at the end of the day, trying to settle down after lunch and recess. We have been discussing sensory breaks for her to help her organize herself before she has to settle back into the desk. One thing that has worked well in the past was a fidget belt I made her. It gave her the input she wanted on her hands without her having to jump up and flap in the middle of her spelling test. (Our team is unders strict instructions from me to not correct or redirect her stimming, but just supplying the fidget give her a different avenue to get that input without breaking the other kids’ concentration – win-win. ) and it does help her stay focused a bit.
Is there any chance that you would be able to get a one-on-one aide for your son? Even if just for a short time to help with the huge adjustment into first grade. It might help to get him into the habit of staying focused at school. It sounds like he is capable of doing the work if he can do it at home, he may just need a little more help at school to transfer the skill.
My daughter’s kindergarten teacher told me yesterday that this first month and a half is the hardest adjustment for all of the first graders (not just ours.) She told me because I was having my own little mommy freak out and actually debating home schooling her because it just seemed to be so hard for her! But honestly, if it’s hard for a “typical” first grader, it’s gotta be brutal for ours. See if you can secure a little extra help for him at school. Because learning to write is such a big part of first grade, I doubt they’d let him use a computer, but you could talk to your OT and see if it’s a possibility if it would help him….
I guess I don’t have much solid advice, except to say, “me too.” Hang in there. My nine year old has Aspergers. He did get hang of the school thing after some bumps in the road. It will get easier once he gets used to the expectations.
Does anyone else feel like this policy change is going to be difficult for our kids on the spectrum? It is certainly going to impact our family and may limit our access all together.
http://www.doctordisney.com/2013/09/17/disneyland-changing-guest-assistance-card-gac-to-disabled-assistance-system-das-could-wdw-follow/
-Jennifer
Hi everyone! I just saw this on The Daily Show and really really wanted to share it with as many people as I could. I may be late to this party, but I can’t wait to read this. My son is 8, and we are in a good place. But I don’t ever get complacent about anything. So continued education is very important to me. Have a great day!
http://www.thedailyshow.com/watch/tue-october-1-2013/david-mitchell?xrs=share_copy
Has anyone found successful strategies to help an elementary schooler with perfectionism and handling expectations?
My 6 year old with PDD-NOS is doing really well in 1st grade, BUT he has high expectations re. his behavior and equates not making the best choices all the time with “being a bad kid” (his words) : ( He even said last night that he didn’t want to go to school – I guessed it was because he had a “yellow” day . His school has color charts for behavior and you move up/down colors – best is blue, next is yellow – so he did FINE, but it wasn’t BLUE, so he was down on himself.
We also had a meltdown at a birthday party because of a party game – pinata (see blog for full details). He believed that HE had to be the one to break it because that’s what you’re “supposed to do” for the game – in his words, “he didn’t do it, he wasn’t the strongest. He was SO SAD”.
He recovered pretty quickly and had a great rest of the party, but mom totally didn’t see this coming re. games, expectations, performance, etc. I’m thinking of creating some social stories re. this – “life” skills, attitudes – but would LOVE any other ideas that have worked for your perfectionist kiddos.
He does come by the self-criticism honestly, because mom and dad are also introspective and self-critical. Not in front of him, but personality-wise.
Thanks!!
PK, I totally understand what you are describing. My husband and I have perfectionistic tendencies as well…but our youngest on the spectrum (she is 8 and a third grader) is very simar to how you described your son. When I read about issues with various children, I watch for someone, anyone, to mention this particular issue. It may not seem like a big deal, but it is a huge challenge for us. My daughter is also very sensitive to criticism, or even PERCEIVED criticism. Until this year, she had been able to maintain high grades without much effort. She is also ADHD and some OCD along with her ASD. Her biggest issue is usually lack of focus and the need to move, move, move…and talk. However, this Common Core business is kicking her booty. She is coming home with D’s and F’s. This is NOT helpful for a perfectionistic child. We have had more than one evening full of meltdowns and misery over homework and studying. I don’t know about your child, but ours has “verbal perfectionism.” If you repeat something she has said, it had better be verbatim. If I try to help her with her homework, and if I do not use the exact terminology of the teacher…not good. She has also has the expectation that everyone else remembers everything perfectly, the way that she does. When she has something to say, she wants/needs to say it immediately, and she cannot tolerate being told she had to wait. I know that this has gotten better over the last year. I will have to give some thought to some of the specifics we have tried to implement. I know that this year, they are finally doing social stories with her. I am not sure if they are helping, or if she is gaining skis on her own. I will think about this and get back to you.
There is a page on FaceBook called the Autism Discussion Page that covered this very subject recently. You can find the page here. I find the information on this page extremely helpful.
https://www.facebook.com/autismdiscussionpage
The posts I am talking about are from Sept 22 and the 23rd
Thank you – found it. That page is wonderful, isn’t it!
Hi all,
I am not sure if this is ok to post here, and if not, feel free to remove it. But, I am a teacher for students with moderate to severe autism and am in a contest to win school supplies that they desperately need. I would greatly appreciate it if you could take a moment to click through the link, like Classroom Direct, and vote for my photo. Thank you so much!
Click on my name, or direct link here: http://woobox.com/gfebw7/vote/for/1283952
This isn’t an emergency issue, but I’m feeling ambivalent about it and I’d love some input. First the question – How involved should I get with Autism Speaks (what are alternatives if not?)
Background: I came upon Autism Speaks in the last 2 years. I’ve not attended any walks yet. I did some volunteer work at their local office and the people there were great. I worked on a committee and same thing. I attended an award lunch and there was not a cure focus at all – more a “how does it come about” and “how can we help” from the people there. I haven’t run into the fight/cure, etc. rhetoric that I’ve heard about – it seems this attitude has shifted, and may have been in the past, at least at the levels I’ve interacted.
I know from reading several blogs that many autistics really aren’t fans. I’ve read Jess’s stance as well and it also makes sense to me. My son is “quirky”, but his health has not been impacted, he is able to communicate. I am not “cure” oriented, but am more neurodiversity/services to succeed/reach out to understand oriented.
I would really appreciate feedback, thoughts, etc. on this, as I want to support research and support systems for autistic individuals, families, etc.
PK, despite my differences with them, I also acknowledge that Autism Speaks does some wonderful work, both in research and in political advocacy. And I think that the more of us who eschew the disease / cure model of autism who continue to engage with them, the more truly representative of the community they will continue to become. For alternatives …
If you’re not familiar with ASAN (the autistic self-advocacy network), I highly recommend checking them out. They are extremely active in grass-roots advocacy and are eager to have allies supporting their efforts. In addition to the ASA (autism society of America) and the ARCs which now make a concerted effort to support our community, there are any number of local support / advocacy groups in different areas. Here in Boston we have the Flutie Fdn, which does wonderful work and supports community services, which are desperately needed, along with the Autism Alliance of MetroWest and AANE (the Asperger’s Assn of New England). I always suggest googling (your city) autism + support to see what comes up and taking it from there.
Hope that helps.
It does, thanks! I clearly understood where you were coming from re. them. Not having done a walk, I hadn’t really come up against the disease/cure thing (Temple got me first LOL). I just want to support groups that fit the reality of my child/family and many of the autistics I’ve come across (thanks to your blog 🙂 I’ve emailed ASAN locally but haven’t heard back – I think I need to find the “right” department there, unless you have thougths as to who or what area to connect with.
Thank you again for your blog, and for sharing your experiences. It really has helped me find a voice and look at the world in a different way. Things just “open up”, you know?
Hi,
I am at a complete and utter loss as to how to handle my son’s school. He is in third grade, has Aspeger’s. Had a horrible year last year with bullying. We took many proactive approaches to try to help ensure this eyar would be better for him. But once again, they don’t get it. His main struggle is socially and this is the hardest for him at recess. We specificed in his IEP that he have an IPSP at recess with him and not a general lunch aide. He has a daily log, and instead of them recording their recess observations, they ask him, and write down what he says.. Horrifying. He suffers from Cyclical Vomiting most likely from migraines or an undiagnosed/specified seizure disorder. His neurologist believes stress is making this worse. I went so far as to last week I sent his Special Ed teacher a copy of wording from teh Asperger’s Assocation of New Englands Website, ways to help him at recess.
Again, nothing has changed. Last night my husband and myself composed a letter, which is below, that we sent to his Special Ed teacher, Classroom teacher, Principal and Guidance Counselor. No response yet. I feel like we are talking to people that just DO NOT get it. I am at a loss as to what to do next. We requested a meeting. But we have met many times before. Do we get an advocated, special ed attorney? Any support or guidance would be appreciated. We are feeling pretty low at the moment.
We are writing to express our disappointment in how recess with X is being handled. X’s log today stated that he played with different friends for both recesses. This was not the case. X spent the first recess chasing someone he considers a friend around who never responded to, or acknowledged him.
Anytime we gently try to approach x about how recess was today he has a completely uncharacteristic nuclear break down. We can assure you, as x’s parents, he is internalizing these feelings of rejection. What is the purpose of his daily log if we are not receiving accurate information?
This is not a healthy situation for him and X absolutely deserves better than this. The part that is the most upsetting to us, is that he still cannot identify social ques of when someone wants them to leave them alone. What if the child got frustrated by him. He continued to follow a child around who clearly wanted nothing to do with him. Where was his recess aide? Who was giving him the social prompt that he should try something else.
Last year we were adamant that he have a recess aide who would help facilitate recess activities. He needs someone to give him the social cues that he does not yet have. Everybody agreed at his last IEP meeting that this was a necessity. What exactly is his aide’s role at recess?
Is his daily log being written from her perspective or from what X is reporting back when asked? We are not helping him by not giving him the support he so greatly deserves at recess. I have heard several times that X has a dream aide. That’s great, but again, what is her role? What plan is in place for him at recess? We need a solid plan. We cannot let him try to figure it out day by day. X does NOT have the tools to do this. Although X does not show that he is upset at school, I can assure you he is internalizing this. It is not fair to him that this continue. X has reported back that his aide is sitting on a bench at recess. We were under the impression that the reason he had a special ed aide and not a regular recess aide was to help him facilitate recess activities. We are extremely frustrated that he is struggling at recess. As his parents, we hope you can understand our frustration and concern for X. We truly do not worry about him at school, except at recess.
We are respectfully requesting a meeting to discuss how we can make recess better for him.
It sounds like time for an advocate. An IEP is a legal document that they are legally bound to follow. If they are not following it, they can get in legal trouble. If they seem to have the idea that the IEP is inconvenient to follow, so they are not going to bother, they need a wake up call.
John Mark McDonald
scintor@aol.com
Thank you. It does seem like it is just inconveinent. We sent his special ed teacher information directly from the Asperger’s Assocation of New England’s website on how to help children at recess. It all just falls on deaf ears.
Thanks for your comment
Hello all – this isn’t for me, but for my nephew, age 30, PDD-NOS living at home. He was misdiagnosed back in the day, teased miserably, bullied, etc. as a kid (he lived in a small town that was the opposite of supportive), lazy school district (they’d rather pay insurance to protect against lawsuit for not providing services than actually provide the services). There’s just a mess of stuff around how he got where he is in his head today.
He wants to be independent, and is getting help from an adult autism assistive group in that direction. But he’s in denial about his autism. He’s “fine”, it’s “not a problem”, etc. As his aunt, and the mom of a 6.5 year old autistic child, I’m trying to be an “unobtrusive resource” – sharing info, talking about how things are different, etc., with his mom, and with him when it seems appropriate.
He attended some sort of autism support group a while back – not sure if it was families, parents, etc., but he told his mom that everyone there was “worse” than he was and he didn’t fit in. I would love to help him find his way, get comfortable with himself, find a place where he feels he fits. But he’s 1000 miles away, in a different place in his life, and partially in denial.
Has anyone dealt with something like this? Do you have any ideas on how to “help without helping”? Or do I just be present to listen whenever he’s ready?
Thanks so much!
Hi PK.
I don’t know what would work best for him, but I can tell you what I’ve had to work on in order to “accept” the diagnosis. First: “do I just be present to listen whenever he’s ready?”….yes to this. You can certainly offer constructive feedback, but at the end of the day, just being receptive to his feelings and letting him know you acknowledge how he feels…that can be huge. Also, it will let him know that he can speak freely with you. It’s likely that he will just shut down around those who insist he accept ideas he’s not ready for.
I was diagnosed with Aspergers at the age of 30…this left me feeling extremely bitter, angry. When I researched the diagnosis online, I just heard how great it was…most of the stories were about math geniuses and savants. This only made me feel more bitter and alienated. The “positives” never clicked for me.
Ultimately what helped was viewing the diagnosis…not as a label I had to accept…but as a toolbox. I tended to view my social issues as problems to be solved…and once I began to see the spectrum terminology as “tools” I could use to solve those problems, I had an easier time embracing them. I didn’t like being told how to react, how to feel about being on the spectrum. I still don’t. I did like gaining the ability to more effectively comprehend the nature of my social deficits…and then developing coping strategies to manage them.
So, when you feel he is ready, you could suggest that he use the terminology and labels like tools in a tool box. If they don’t fit who he is, great…but they can still have use-value. He can just pick them up every now and then, use them, then put them away.
To put it differently: once he has social goals, he can just temporarily use diagnostic words as a way to achieve those goals. “I had a bad interaction, and it’s because autism/Aspergers prevented me from seeing this or that bit of social data. Now I know, I can try to pick up on it next time.”
Viewing the labels as tools 1. gives him more control over them and 2. gives him time to sit with the words, perhaps get used to them.
Again, this helped me, I can’t say for sure that it will help him. I just know I too struggled with accepting the diagnosis, and it’s never been easy for me to just readily embrace the concept of being part of a community. I get that he wants some distance, and that’s okay…hopefully in time he can find a relationship with these terms that will be more comfortable for him. Let me know if you have any other questions, good luck, this is such a tough spot and difficult to navigate, I know he’ll appeciate your concern and caution.
Some people are more comfortable dealing with falling under Asperger’s rather than autism. I was undiagnosed as a child. Back then, the only people who got the autism label were institutionalized children. I found Asperger’s syndrome back before it was in the DSM and was comfortable with it. As more was learned, I could accept that Asperger’s and Autism were related, but would not apply it to myself. It took some effort but I have finally become comfortable with labeling myself as autistic. I know of others who will only admit to being part of the BAP (Broad Autistic Phenotype), which means that they will admit to having autistic traits and limitations, but not the “disorder.”
My advice would be to ask him where he feels like he fits in the community. Encourage him to look for people and groups online that feel comfortable to him. Many local groups tend to be very focused on a specific subset of the spectrum which does tend to make others feel left out. (I’m the token autistic adult in my group.)
Above all, be gentle with his reluctance. Offer support and resources and then let him pick his own path.
John Mark McDonald
I’m having a rougher time than usual with something. How do you reconcile being happy for someone else’s accomplishments while sad about your child’s lack of those same accomplishments? It is easy to view each child as an individual when not forced to see them around other children (play dates) or read about other children (family email updates, friends’ facebook posts, etc). However, when reading about a 15 month old doing things your 30 month old child has just mastered, is still working on, or has yet to master, it is really hard. I am happy for them and know by now, with my 3rd child, that each child develops at his own pace, but it is overshadowed by my feelings of longing for those same accomplishments for my boy; it’s hard to separate the two. I know everyone faces challenges and try to remind myself of that when I feel this way, but it can be really hard. I feel guilty for the feelings of jealousy, because I AM happy for them and their children but it’s hard to view their accomplishments through the same lens as I view my child’s accomplishments.
I’m not sure that you can, or that you even have to. I have struggled with this, and still do. For a while I almost had to practice being happy for those other parents – little things, “liking” a picture on facebook (you know, where they can’t see my face as I force myself to hit the button). It does get easier with practice… But more important than being happy for them, is being happy for you. Being happy for the perfect little gift you have been given and how very unique this journey is. It takes time. It takes practice. But sometimes, withdrawing just a little from everyone else and putting a little more focus on all the little gifts that your child is giving you will help to get you through it. My daughter (age 4) can’t run, can’t walk very far, and can’t speak. But she has this amazing way of just being, just sitting and absorbing the “small” moments, like the leaves dancing in the wind. And she makes other people stop and see it too. Just by being. I don’t know any “typical” 4 year olds who can do that. So that helps enormously. Because it’s harder to be jealous when you recognize that you already have so many blessings. So their kid can run, but they’re missing out on something else. So yay for them, but double yay for us. Hugs.
Anyone have experience w/Interoceptive sense/pooping & peeing? I came across this information and my mommy radar started pinging, since my son has some minor issues re getting to the bathroom on time/ not knowing the difference between passing gas (a big one) and pooping (a little one). He actually potty trained pretty well, but it seems like he’s often “last minute”, or can’t tell when it’s a little poop vs. a big “gas”. And he stays dry at night maybe 50-75% of the time during the week. He’s 6.5 years old.
It isn’t as “bad” as having “real” accidents, but he’s always bummed out when it happens. Anything we can do to make him more comfortable is great. I was hoping we could get off the miralax, but if it helps him manage his bowels, I’ll stick with it.
I also don’t want to blame him for something he can’t control, but I don’t want to “let it slide” if he’s just doing the kid thing of ignoring his body because he’s enjoying what he’s doing/watching/playing. How the heck do you tell the difference?
I have e-mailed his OT and other members of his team at school to see what we can do. It’s not a problem at school, and only a minor problem at home, but I want to get on it ASAP so we can manage it before it becomes a larger issue. I also left a message with his pediatrician to see how familiar they are with this.
Any idea who I can talk to re. getting help with this? Has anyone had experience with this? Any experience helping your kiddo better regulated in this area?
I apologize for asking semi-regular questions, but the parenting village here is great, and I appreciate your help. Sorry this is long.
What has been your experience with our kids on the spectrum and games/competition/school related competition-prize things? Here are two examples, and I would love any feedback you might have on this:
1) e-mail from teacher (they have rally’s sometimes and he does ok with them as he’s a sensory seeker). Her message – “The teachers had a contest and only one could win. The winning teacher got 24 pieces of candy for her class. Well, I didn’t win and it made Daniel very upset. He wanted that candy so bad. It all turned out okay because he won candy for his royal ticket that he got from doing IXL math. However, it won’t always be that way. So, let me know what you think. 🙂 ”
2) We went to a birthday party and it was the first one with actual party games. One was the piñata. He knew the rules were, you stand in line, swing the stick and break the piñata and the candy comes out. I took for granted that he understood that everyone does that, you don’t know who will break it, and if you don’t break it, it’s no big deal. For him, the goal of the game was HIS responsibility. HE had to hit it, and break it, and if HE didn’t he was doing something wrong – in his own words, he “wasn’t strong enough” and “didn’t do it right”. He got SOOOO upset by this. And since I didn’t see it coming, I couldn’t explain it before hand. He bounced back, but I honestly think the competition thing doesn’t quite make sense or isn’t comfortable.
3) Here’s another example – he likes to play “CHASE”, better than “TAG”. 🙂 This cracks me up a bit because to US, it’s the SAME game. But to him, it’s the chase that’s fun. The whole being “it” thing doesn’t have the same appeal as the fun of running, catching the person, and taking turns running/catching.
We do play boardgames sometimes, but we all get home late from school-aftercare/work during the week so not as often as I should. What can I do to help him understand games? To help him not feel like a failure when he doesn’t win? Is it possible to find a healthy level of competitiveness, or a comfortable level of non-competitiveness for kids on the spectrum? Especially for boys, where it seems that it’s “expected” to be competitive. I’m not going to push him to be what he’s not, but I want to give him as many tools as I can.
Ok PK…. My son’s experience has followed a similar trajectory. Poor sportsmanship pretty much all around, clearly sees winners and losers, but not all the grays in between, makes everything (everything!!) a competition, sees it as personal failure if he or his team or his class doesn’t win said insignificant prize, title, bragging rights. Yes, it has gotten better with maturity. He’s still only 9.5, so he’s still not that mature, but it has become less frequent, less pronounced, and shorter lived when he has these whateveryouwannacallems. I have stressed that say, in his class of 22 kids, one kid gets the highest grade or runs the fastest. That leaves 21 other kids who didn’t win (or LOST as he must say) or were not the fastest or whatever superlative fits. Introducing the shades of gray is important, but so is letting time pass and seeing some of those rough absolute edges soften. It’s hard to wait, for both of you. It continues to improve with some mild backslides here and there. Fwiw, most kids can be crappy sports, some just hide it better than others. Patience darling, constant reminders that not everyone wins (most ppl dont!), and removal from situations as deemed necessary (not always at all) where the proverbial sh!t can hit the fan. Not every moment has to be teachable.
Hi all- I am looking for some connections in Massachusetts. My friend is trying to get a diagnosis for her son and apparently can’t even get an appointment until May. I live in PA, so I’m not too familiar with the system up there. In addition, her son has services through the school district with an IEP, but they are not following through, so I was hoping someone could recommend a good (preferably cheap) advocate to help her out in that area as well. So a good diagnostician (we can use psychologists here, I’m gathering that is not the case up there) and a good advocate preferably in Southeastern Ma. I would be very grateful for any leads. Thanks!!
You can email me if you don’t want to post names and numbers. (Just don’t laugh at the address, my hubby made it up. ;). )
superbiologybabe@hotmail.com
Check out BehaviorBabe on Twitter and/or Facebook. She is an old friend of mine, a licensed BCBA, and is familiar with Massachusetts. She may be able to point you in the right direction. I hope this helps!
Thanks! I will go look her up right now. 🙂
I love the id – Your hubby is a genius 🙂
Thanks! 😉
Hi all! We live in Fort Worth, where 3/4 of the year it’s sunny and clear. Then fall hits and the weather changes dramatically – low pressure systems come in somewhat regularly. I’ve noticed that my 6.5 year old son’s concentration takes a dive, he’s cranky, antsy, etc., usually the day before the system arrives. I’ve noticed it before, but since the summer weather is here for SO long, I almost forgot about it.
Has anyone else run into this? Is there any way to manage it? I have a “hug t-shirt” that I had him wear today, and a kid strength asprin in case he has minor physical discomforts that he can’t pin down and describe to me.
Thanks so much!
yup. changing barometric pressure wreaks havoc on our kids. in our experience, weighted blankets can help (weighted lap pads for school) as can extra excercise time to get the jigglies out. incidentally, time / seasonal changes are hard too – changing light, changing routines, more time inside etc … i’d love to hear other suggestions, particularly from those wo experience this themselves.
He also may have allergies. Mold and pollen counts go through the roof at this time of year, which can leave you itchy, your head clouded, more difficult to breath, and other more common allergy problems. This was my nemesis as a kid back before they diagnosis 30 years ago.
John Mark McDonald
Scintor@aol.com
PS (I’m in Abilene and my allergies went crazy a couple of weeks ago.)
My almost 7 year old autistic son is going through what I think is regression with separation anxiety. I’m not sure as we’ve not been in this arena before, but what my gut is telling me. It’s breaking my heart to see what he’s going through. Any resources or insight you could share would be greatly appreciated. Thank you so much!
Can you give more specific examples of what circumstances are upsetting him? Going to school? And what is the behavior that seems like regression? And can you describe him a little?
Both of my girls, both on the spectrum, are highly verbal and initially were diagnosed as Aspergers. They are very intelligent, but are emotionally and socially challenged. They both have severe anxiety. They also had a hard time with separation at that age. Interestingly, they both said the same things. They not only missed me, they were worried about me. They each had a fear that something would happen to me while they were away. It was less about wanting to avoid school and more about worry. I actually have books about worry to use with young children, and I did a lot of reassuring that it was MY job to worry about them! That was a hard phase, but it did get better.
Starting first grade 10 weeks ago put his world off-kilter. Anxiety sky rocketed, seen by lots more stimming, scripting, obsessing on things. Last week due to a gross oversight by the school he was left out of a behavior celebration that he’d been looking forward to for over a month & knew he’d earned enough tickets to participate. Him missing the celebration was the catalyst into regression, I believe. And the downward spiral of heavy sensory seeking, physical aggression instead of using words, sleep disturbances, picking at himself physically, hyper sensitive & just emotionally raw. He’s going to school for 2 hours a day & it’s taking everything he’s got to keep it together while there, then coming completely unglued the rest of the day. His diagnosis is autism, very high in some areas & significantly delayed with social/emotional.
My daughter went into anxiety disorder at that age and refused to go to her class and had meltdowns every day in the office instead for over a month. Thinking back to my own childhood, that was the age that I gave up on people and relationships and became a loner. Lots of things happen as far as forming peer groups at that age rather than just one on one friendships that can make the entire social environment incomprehensible. My advice is that they may be old enough for starting to help with rule and consequence formation at that age. You will most likely be surprised at how hard on themselves they are if they are allowed to suggest rules, but if they have a hand in their formation, it just might give some stability to a world that has stopped making sense.
John Mark McDonald
Scintor@aol.com
My son is extremely rule oriented and definitely holds himself to a very high standard. The anxiety has been an ongoing challenge, but the separation part is new & related to the regression. We have not faced a regression until now, so are struggling to know how best to help him.
Regression is a term thrown around that is misleading. The implication it that suddenly their condition is getting worse and they have lost the gains that they have made. With people on the spectrum, what looks like regression is often their attempt to deal with a new challenge. Because we think in different ways than the general population, we often have to use work arounds to do things that others do instinctively. These work arounds take time and effort. Because of this, when facing a new challenge that takes most or all of our concentration, we no longer have the available resources to keep up the work around as well. This appears as if we have “lost” skills or social abilities, when in fact we have put them on the back burner until we have the free resources to use them once again.
John Mark McDonald
Scintor@aol.com
I didn’t like referring to it as regression, but didn’t have the verbage. This challenge has been traumatic. The way you describe it fits, a work around. Can you recommend any resources that will help us (parents) support him through this? Thanks!
Try talking to him about what is hard at school. Allow him to write or draw about it if he does not have the words or the memories are overwhelm him.
The really hard part at that age is that he may not have the self-awareness or vocabulary to explain what is going on with him. In any case, a really helpful thing for people on the spectrum that are being overwhelmed is the concept of a safe place. A safe place is a place that he can retreat to. For many on the spectrum this is a space without bright lights, loud sounds or people. This allows time to regroup and sort things out when they are overwhelmed. Having such a place to retreat to both at home and at school as well as a set of signals (both verbal and non-verbal) that the adults around him recognize that allow him to go to this place when he needs to.
Hope this is helpful.
John Mark McDonald
Scintor@aol.com
John – thank you for the support. We decided to take son out of school. Homeschool seems like it will be a better fit for him at this time. He’s been home for a week and just starting to relax a bit.
Hello everyone! This is my first time posting to this community page, so here goes 🙂 My 9 yr old son is on the spectrum and is mainstreamed. This year marked moving from elem. school to intermediate school. So, new school, new teachers, etc. And he does NOT handle change well. He has developed a giggling/laughing habit that is growing out of control. So bad that he couldn’t control it while taking a test and he received a “D” grade. The teacher and the autism teacher are asking me for suggestions for keeping it under control. Now, as a side note, I have had difficulty communicating with them this year and I do not feel that he is being supported the way he should. His IEP states that gets adult supervision thru out the day as needed, but he only has an aide with him in the morning (prior years he had an aide all day). I was told that they “are working on it” as far as providing an aide all day. In the meantime, I was wondering if any other parent(s) had a similar issue and how did you deal with it? I am now going to try to implement a reward system – not laughing out of turn in class for the entire day = 10 min. of time on the Wii after dinner. I’m at my wits end and completely frustrated at the lack of support the school is showing me and my son. IMO, I think he’s doing it as a stress reliever. I am also considering having an observer come into his class and observe him for the day. The teachers claim there is no pattern and they do not notice any triggers for the laughing. Any advice would be greatly appreciated! Thank you!
Laughing can simply be a reaction to stress and not under conscious control. I often laugh when I am suddenly injured, which tends to confuse people. I also tend to laugh at odd times because I see something that reminds me of something that reminds me of something funny I saw. If I try to explain the chain of connections, I lose people quickly. If he says that he cannot stop laughing, there is a technique called paradoxical intention that can stop “the giggles.” What you do is try to laugh intentionally, and the unintentional laughter will stop.
John Mark McDonald
Scintor@aol.com
thanks, John! I will look into that! At times all it takes is for his sister to say something and it will throw him into a fit of giggles and laughter. I struggle with telling him to not laugh – I don’t want to take the joy out of life 🙂
I have a question pertaining to discipline of an autistic child. She is high functioning but has begun spitting on her floor. She does this when she is mad, especially at her mom. Her mother has tried everything the doctors have recommended but nothing works. She is also stealing, whatever she wants she takes…cellphones, shoes, many things are taken from other students. She is in middle school and has no friends because she is mean and steals. Her mother does not believe in corporal punishment. Any suggestions?
Wow. I’m thinking you are a staff member? A family friend?
Jess constantly reminds us that “behavior is communication.” Has anyone done a behavioral assessment to try to determine the triggers/ rewards for her behavior? It sounds like you are looking at this solely as a discipline problem, rather than a symptom of something else. Any child who “has no friends because she is mean and steals” is not a happy child. My heart breaks for her and for her mother.
I’m not surprised that the mother does not believe in corporal punishment. Even if you believe in corporal punishment, I personally have never met a person on the autism spectrum who responded well to corporal punishment.
I hope someone can get to the root of this and help this young lady.
Margaret
Hello, I had a questions about IEPs. I have a three year old son who goes to preschool. The school district is currently in the process of evaluating him so he can get more classroom support (he tends to get distracted and not follow the group/needs reminders to do things, etc).
However, I am finding the IEP ridiculous. Here is a kid with tons of great skills and abilities (numbers, visual, spatial, memory, verbal)- and they want to make one of his IEP goals sitting still on the circle. They want to put a weighted blanket on him and give him a fidget. He is totally engaged during circle time, he just can’t sit perfectly still, and sometimes he jumps up and down at the end of a good song with excitement.
They also want to give him OT because they think he seems ‘clunky’ at times. Um….is that a thing?
I feel like his IEP is being designed to be easier on teachers. Who cares if he moves around on the circle? He protects his personal space so it isn’t like he bumps into people or touches them.
I’m already annoyed and this is his FIRST school IEP.
Anyone have any suggestions on how to deal with the school district? Isn’t there a more progressive approach to this? (He goes to private preschool that I chose because the class size is less than 10 kids and 3 teachers).
Thanks!
Kristin,
As a mom of older kids, I understand your confusion with your first IEP. I had my first IEP 13 years ago, and they still are the worst parts of my year. A few things come to mind:
First, in order for your son to receive services/ classroom support, he needs to have goals. If he is advanced for his age educationally (which is sounds like he is), then the goals will have to be in the areas of communication, classroom behavior, fine/gross motor, etc.
If you are going to be in school, being able to stay in your seat is, for good or for bad, a worthwhile skill to learn. Weighted lap pads and fidgets are awesome accommodations which address some of the sensory needs that cause kids to need to move. These types of strategies can be very calming and some kids love them. The point is to treat his need to move as developmental/ natural and not disciplinary. As long as they don’t think that he is misbehaving when he moves around, I don’t see where trying some things to help him sit for longer periods of time would hurt.
Second, OT can be a very, very valuable service. Many of our kids have gross and fine motor delays or challenges. Getting OT early can help alleviate some of those challenges. The fact that they say he is “clunky” at times may mean that he doesn’t move through the classroom space or interact with pencils, scissors, etc. at the level of the other children. The school system is offering you a valuable and expensive therapy, which some people have to fight to get.
Third, IEPs are hard. In order to get services, we have to focus on disabilities and weaknesses. School systems can’t justify the money and staff on services if the child doesn’t have weaknesses. But the laundry list of what’s “wrong” can be hard to hear, especially when you know what a fantastic kid he is, and how many strengths he has. Make sure that the present level of performance states your child’s strengths as well. And you can start teacher conferences by asking about strengths first. I often start IEP meetings talking about how great my child is, and all the miracles she has accomplished. Then it is my job to point out all the places where she still needs help. This is especially true now that she is older and is an honor roll student.
The IEP goals are going to be based on challenges, not strengths. As long as the actual staff and administration of the school see the strengths, your son will do well.
Good luck!
Margaret
Thanks, Margaret, for taking the time to respond! IEPs are very confusing but I supposed part of our life now. I guess it is just going to take awhile to process it all. Thank you for your advice.
Ok guys need your help. My little guy who is 5 is having major issues if im not around. Perfect example today we were at a birthday party at a water park. My husband and I stayed. Now what happen was I had to get changed then go to the car. Jacob was in the water with his friends and I explained to him daddy is right here im just getting changed and ill be back in a bit and he was fine. Next thing I know I get a frantic text from my husband he is in a full blown meltdown cause he needs me. It was so bad he was hitting my husband and the life guards thought that perhaps that my husband wasn’t his father just a stranger trying to take him! It was mess. I came running in as fast as I can and jacob was yelling I was worried about u mama! I need you! I dont know what to do he has major anxiety if I try and go out if its dark so our every four month “date night” is a date afternoon..he needs to know where I always am even if I run to the bathroom he has to be right in there with me. I dont know what to do im getting extremely burnt out as im a stay at home mom that really could just even use a 1/2 nap! I feel horrible for my little man and my heart breaks to see the terror in his eyes. Nobody can put him to bed but me does anyone have any ideas what I can do to help him? Im so worried if I got sick or my daughter was sick or hurt and I had to stay at the hospital I dont know what Iwould do!!??
Tonia,
First of all – big hugs to you. It is so exhausting and you need to take care of yourself. Do you have an autism specialist at school or a behavioral therapist? Perhaps they could help you set up a reward system for being away from mama for (very) short periods of time, working up to longer? Perhaps you could start with the bathroom, and ask them to help you find a way for your son to be outside the door while you are inside? I have an older child with severe anxiety, and I know what a difficult balancing act it is and how painful it is to see them suffer. One of the hardest things for me was finding out that I needed to be less reassuring – that the more accommodations I made for my son’s anxiety, the more I was strengthening the anxiety. Basically, by constantly reassuring him, I was sending the message that there actually was something to be anxious about. I get anxious about the prospect of him getting anxious! I wish I had gotten professional help for my son’s anxiety much, much earlier in his life.
Please remember that you have to take care of yourself or you can’t take care of your little ones. The oxygen mask cliche is still true. So many of us have been in your shoes; you are definitely not alone!
Margaret
This sounds like he has realized that people can leave or die and never come back. This can create extreme anxiety in a world that he cannot predict and can evolve into anxiety disorder. Since this is hitting fear at the deepest level, words will not make any difference. The method that I might work is to let him set “rules” that allow him to believe that you will return. Something like “If I hold your picture, you will come back.” It is very important the he sets the rule and sees that you come back. This will allow the world to become predictable and stable again, and his anxiety should ease.
John Mark McDonald
Scintor@aol.com
I would really appreciate any advice to give to a mother of a teenaged girl with Aspergers who is struggling with what looks like it may be depression. What to recommend to the mother and the daughter in the way of reading or resources? Anything to give hope for her and her mother that she can survive this time of growing awareness of herself and her differences that is weighing really heavily on her?
This is a great article that might give some around you a new perspective, and confirm what most of you already know about your loved ones on the spectrum. http://seventhvoice.wordpress.com/2013/11/16/new-study-finds-that-individuals-with-aspergers-syndrome-dont-lack-empathy-in-fact-if-anything-they-empathize-too-much/
Our Neuro recommended Buspirone for our autistic 5 yr old to lessen anxiety- has anyone had experience with this? Also melatonin for sleep.
Hello Diary readers. I would LOVE Input from AUTISTIC people, and the people who love them, about the challenges faced when going to the doctor. My husband is in medical school. I read a blog post a while back from an autistic blogger who had a very hard time at doctor visits with communicating issues and processing the doctor’s responses. What do you think would be useful for doctors to know when dealing with autistic patients? I don’t know if I can get this info to the “right” people but I’m going to try. Thanks!
FROM A READER PLEASE HELP! THANK YOU!
Hi, I am a Mum of two boys (one on the spectrum) and also a teacher aide to three kids with various disabilities. One of the boys I support has extremely complex needs. Every day we complete a communication book so that he can ‘tell’ his family about his day, he is non verbal.Basically the idea is he chooses pictures and glues them into the book. Due to his variety of need this is extremely hard for him and I dont feel he gets enough input into the process.He has an Ipad that he is very competent with and I would love to change his comms book to an app on there. Ideally we need to be able to create a page template that he can then choose,drag and drop pictures onto. We need to be able to create our own pictures/photos and export it by email to home as the Ipad is school funded and has to stay there. I have tried various journal/diary apps but a lot are just too complicated and ‘busy’. Does anyone have an suggestions? Thanks a lot.
This came up today on another feed and may help re the reader asking for help
My son has sensory processing issues and he likes to be tucked in tight when he sleeps. I found a woman on etsy that makes lycra sheets, they go over the bed like sleeping bags and keep him all tucked in. He loves it. I know she makes them for kiddos that have autism too, so I’d thought I’d share the link. Maybe this can help someone else.
https://www.etsy.com/shop/skweezrs
Ok so I am a preschool.teacher.who has been teaching at the same place for about 8 yrs. I have seen many kids come through my classroom and have hd quite a few whom I have had concerns about. However there is one particular child who I am struggling with. He clearly.has issues and I suspect he is on the spectrum. We had him evaluated through the local public school but we got nothing. Inthen stepped.up.to.the plate and started doing research.I made visual aids for him in areas he struggled.with and he has had success with these. However he continues tonstruggle.in areas in which I can not help. I need advice on what to do next. He strugles with routines and has a hard time if something changes( ex. At lunch the other day he was not able to.finish his lunch. He had a sandwich,, apples.yogurt and dried fruit all.out in front.of.him). The linch bell.ring and.he still.had not had most.of.his.lunchand he started having a hard time. I.made a deal.with him, the the next day we would only take.out one item.at.a time eat it and then remove another item.from.his lunchbox to.which he agreed to( I.usedd.to.do.this with him and itworked like a charm,.however a couple.of.others stopped.that this.yr). The next day he had out his apples and was starting to take out other things. I stopped.him.and said remember what we talked about yesterday, his response was.oh.yeah. I started.putting his stuff back into his lunchbox and left out his aapples. He started to.freak out because he wasn’t supposed.to.eat his apples first. I calmed.him.down and told.him.it was ok this time( he usually.eats his.sandwich first and its a rule at school).
Yes this time I was able.to talknhim.through bit there are other time I.am.not able to. What do.I.do
Thank you for your searing honesty. Found this today Thanksgivong day from a friends facebk post. My son
Is now 19 but the journey and his challenges and our families challenges remain. There has been amazing growth overtime which your blog helped me remember today. Thank you.
Is anyone familiar with teamPBS.com? Positive Behavior Supports Corporation – family member is sending this to me as a job lead or something… I’m going to check out the site, but am interested in others’ experience with them, if any. ABA is mentioned, which is a red flag for me if it’s “old school”. Has anyone heard of them or dealt with them and/or experienced the support they say they offer?Thanks!
I hope everyone is having a wonderful holiday! A couple of questions:
1. Does anyone know how to transition into a career of Autism Employment Advocate? I’d like to work to help companies/autistic people connect and benefit mutually.
2. Does anyone belong to LinkedIn and what do you think of joining the Autism Speaks page and answering questions from a neurodiversity perspective? Basically spread the word about autistic adults for others to find and learn from?
Thanks!
Just wanted to share this awareness opportunity-I was on linkedin and this link was mentioned with this comment by L. Scott Lissner, Ohio State University ADA Coordinator: “Wouldn’t it be cool if there were a bunch of submissions be kids using Assistive technology – spread the word… http://www.whitehouse.gov/FilmFestival.
We live in florida my child has a.d.h.d mood disorder an odd. We have him on healthy kids. Things have become really bad the therrealist an drs say we need a behaviorist at home child is in day treatment setting at school but doesnt get the help he needs cuz of insurance direct words from dr an therapist. They say we need medicaid. We applied for him an myself I have disease that qualifies but I am unable to get medicaid also.we are both denied only because when husband works overtime we are over limit. No one even lawyers say they can help meanwhile we struggle every day and hoped obama are would help they have not.
Hi! I work for In Home Behavioral Services and one of my moms asked for resources to help her explain/describe/talk about autisim to her 8 year old Autistic daughter and 10 year old step brother. Can anyone recommend favorite books/materials/websites on this subject?
hardly the end all be all, but here’s my most recent post on the topic .. https://adiaryofamom.wordpress.com/2013/10/07/disclosure-2/
hopefully folks will chime in with resources.
Thank you for all that you do Jess. I have been reading and reading. I am trying to get my feet wet. I set up my account and this is my first time posting. Sorry if I mess up. Once I click “post comment” there is no turning back.
Ha. You did it!
Hello everyone. I need your help – do you happen to have a favorite post – yours or someone else’s – that speaks to the issue of silencing and very clearly defines it? I understand what it is, but can’t quite put it into words. I’m looking for something that non-autistics will get because I want to repost on a forum that would benefit from this information. There may be some that will refuse to see their own behavior, but I feel I need to share this for the others that will nod and say “oh” to themselves, then make changes in their interactions. Thank you for your help with this.
I have a question about “screen time” and Asperger’s. My 9yo Aspie daughter tends to go through “stages” with her obsessions …sometimes it’s Barbies, sometimes her American Girl dolls…right now it’s Cut the Rope. I know that this is her escape so I try not to limit her tooooo much, knowing that by next week it may have passed and she will be playing Barbies all day. But it’s hard with the other 2 kiddos in the house…I don’t want them on the computer or iPod all day. My question is…do your limit your autistic kids’ screen time (knowing that that’s what parents are SUPPOSED to do?) or do you let them indulge as long as they are getting homework, etc done? Thank you! I trust the opinions here more than if I were to ask the dr, school psych lol 🙂
My daughter 16yo is suffering from panic attacks, anxiety and depression. We see a therapist but it’s so hard to watch her suffer. Any advice is appreciated.
Are you interested in finding out about nutritional approaches that may help? My 11yo experiences anxiety, panic and depression (all of which quickly turns to aggressive behavior) and I found help for him via whole-food supplements. We’ve also shifted how we all talk to each other, along with the supplements and, for us, both of these have helped.
Please reply and let me know if you would like for me to expand on this advice.
I am almost afraid to ask this…. do any parents have their children wear ear plugs in certain situations? Such as a school assembly? I have a 7 year old who loves to participate and doesn’t want to miss out on the fun but then gets way too overwhelmed by the noise. Before I Google this, I thought I’d come hear first to ask you.
Never be afraid to ask anything here 🙂
Yes, my 2nd grader uses headphones at school assemblies or anywhere where the noise level is too much for him to concentrate. He’s not alone – several kids have headphones on during these events. I’d work with your child to see what he/she is most comfortable wearing to block out the loud or background noise and go from there. Good luck! We bought our headphones on amazon for $13 or so.
Brooke uses them at school too. Never be afraid to ask. 😉
I let my students use them in class when I know they need it.
Awesome. Thanks for your replies.
Hi LynnPaige,
Yes, my son in 1st grade uses them. We have small silicone ones on a rope that you’d find in, say, the outdoor equipment/sporting goods section (I would assume for shooting?). We use those for things like parades and outdoor events. Then at school they have more proper noise cancelling headphones for assemblies. I don’t know how we’d manage without them.
Hope that helps!
Does anyone know of a special needs photographer in the Miami, Florida area? One that is familiar with autism and does out-of-studio photography? Thanks!
This is the only one I know. http://acottophotography.com/
It is A. Cotto Photography.
I’m long-time reader of this blog, and I love how supportive this community is, but I’ve never posted before. I’m about to disintegrate, though, and I have to put down these thoughts somewhere. My son is 12 and fits pretty neatly in the old Asperger’s diagnosis. He was always a straight A student and so proud of his work at school, but lately he’s fallen apart–dropped to Cs, can’t seem to get any work done. The year has been dreadful, academically, socially, behaviorally. He moves up to 6th grade next year and I don’t know how he’s going to handle it.
Then he had a “seizure-like” episode and collapsed at the grocery store. I’ve been reading everything I can, and I think a few other odd episodes were probably also seizures. We go tomorrow for a sleep-deprived EEG, and I’m TERRIFIED. I’ve got this fear at the pit of my stomach that won’t quit. I don’t even know what I’m afraid of. I’ve tried to educate myself online (sticking with the most reputable sources I could find), and it seems like the worst-case scenario is that he needs anti-convulsant meds and should avoid taking up rock-climbing. I’m being flippant, but barring some very rare conditions, odds are that even if it is seizures, he’ll be fine. If it is seizures, treating them could even HELP his academics and improve his dreadful sleep.
So why am I so scared I can hardly breathe?
I have a ton of work to do–I need to get ahead, since tomorrow will be shot. I’m hoping if I write this down I’ll be able to put it aside for a few hours. I’m afraid to make any phone calls because I might burst into tears.
It’s just really, really hard sometimes. Thanks for reading and understanding. – Elizabeth
We went through the same – well, similar, thing. And I was terrified too. And we got information and made unfathomably hard decisions and yeah, no rock climbing or solo baths.
But it doesn’t take away from the fact that walking through it, hooking up wires to your baby’s brain and being at the mercy of something you can’t even see no less control and doctors with really big words is god damned bloody scary. He’s your kid. Of course you’re scared. It’s ok. It will be. Just don’t forget to breathe.
Thank you so much, Jess. I’ve been walking around all day gulping oxygen like a panicked goldfish. My mental capacity is about as advanced at the moment. The good news is that by this time tomorrow, this bit of anxiety-producing ickiness will be behind us.
Speaking of fish, my mantra today has been straight out of “Finding Nemo:” Just keep swimming, just keep swimming.
Thank you again. I wish these kids didn’t have to go through so much. It hurts my heart to see my son trying to be brave. He shouldn’t have to be brave about this kind of @#$%.
All best,
Elizabeth
I need help with an awkward family dynamic re. autism. My son is on the spectrum in 1st grade (he would be called “high functioning” because of language/communication skills). I have 3 nephews also on the spectrum; 2 are in school, one is in residential care and doing very well there. We halfway across the country from each other so mostly hear about the kids through facebook/family conversations. The problem is that the child that is in residential care is “left out” of conversations and pictures. He is physically separate from the family so he’s not in facebook “family” pictures (which makes me sad, so I’m looking for a special-needs photographer as they may not know they exist). He doesn’t do things with his brothers.
I’d like to know how he is doing, but I feel like I’m doing something wrong or bringing things down. And if I bring up anything about the separation, I’m expecting that I’ll get jumped on because “I don’t understand” and my kid is “fine”. I DON’T understand, I don’t know how hard it is. But it’s like he’s disappeared and that makes my heart hurt. But it’s NOT about me. It’s about him.
Do I mind my own business because I’m not part of things? Do I just ask because I DO want to know how he’s doing and let people deal with their own feelings? Do I share the photographer info or am I stirring up trouble? It’s such a mess and I don’t know how to deal with this, or if I should. It just feels so WRONG to not consider him, or ask about him, or whatever, if I’m asking about the others.
You are right to be cautious. A decision like putting a child in residential care is often attached to massive amounts of guilt, no matter how good a fit it is to the situation. My suggestion is to see if you can start talking to the kid yourself through Facebook or email to see how things are going. Being autistic, I process separation a bit differently than most people seem to. I enjoy being around people when they are there and love it when they contact me, but they seldom enter my mind when they are not there. I just don’t seem to miss people in the way NT people to. I know that the situation seems sad to you, but there is a good chance that you nephew is not suffering. OTOH, your sibling may be suffering quite a bit for making a good decision that is very hard.
John Mark McDonald Scintor@aol.com
Sent from my iPhone
>
I was wondering if anyone had some signs that i might look for in a 9 year old boy. Thank you so much for any information.
Melissa
Melissa, what do you mean by signs? Can you be more specific? Do you mean signs of autism?
Yes I’m sorry. Signs of autism. Thank you
Hi Jess, I thought I should ask you.. My son is 13+ and he is in his small classroom with 5 more kids for English and Math, he does go to regular 8 grade for science and SS. He is not a social talker, so he doesnt have many friends. That is one issue I am struggling with. I want him to have an experience of a teen, you know,Movies, outings and lunch or dinner with friends. But he doesnt get these invites. I have so many friends and feel very bad for my son that he doesn’t its always us going out for all these stuff as family. How do you find friend that is my issue You know many people do u think you know someone with whome my son could hang out? ANy club I should take him? The autism resource centers didnt work out for him, It was very overwhelming for me and him both. Thanks. We live in Franklin, MA but we wont mind going anyhwere for a “friend”.
Jaya, what does he love? Start there. A random club won’t be helpful, but if he loves minecraft, or trains, or gaming, or science, whatever he enjoys, look for that. Shared experience/likes is what makes friendships, not just “social talking”. Some community colleges have classes for kids, especially during the summer.
Remember, he is not you, so not having “lots” of friends may not feel the same for you as it does for him. He may actually be content with a smaller number of friends. And if you are neurotypical and he is not, the experiences won’t exactly “match”. But it totally is understandable that you want these things for him. Helping him to find people that “get” him, or find his “tribe” – those that he fits in with, will help with that.
PK, I do understand that he is not me but I try my best to give him the experience at least once, Atleast he should KNOW then its his choice to continue or not. I feel sad that he spends his vacation days alone, or with us and his brother. That is why I thought of reaching out to all of you, SOmebody might be in the same shoe and we can give it A try and it might work or it MAY NOT work but as a mom I should do the trying part at least. Thanks for the feedback
.
I hear you. My boy is almost 7, and so far he has playmates, but I haven’t noticed “friends” yet. He doesn’t seem too concerned about it yet, but of course, I’m already thinking about it. There’s a facebook page that you could pose your question to (Parenting autistic children with love and acceptance) – there might be people there who have some ideas. I just saw a blog post that mentioned “aspergers game night” – I think the mom started the group for her son. It was a mixture of people, but a good, safe place for her son to have fun. Take a lead from him to some degree. If he’s happy/not focused on it right now, don’t stress yourself by focusing on it. But definitely finding ideas and filing them away is a good thing 🙂 Maybe also look at meetup.com and see if there’s a group in your area that might be a good fit for the both of you. Good luck!
Jess, was reading your “faith” entry, I guess it was not a nice day to read that. I have been little down this week, dont know what is going on. Usually I bounce back but this time it is hard. Anyway, With your blog and my mood somehow I am not feeling the “faith” in me. I wrote long back –
http://momlovesanand.blogspot.com/2012/10/it-could-be-worse.html
and I do still feel why us.. But somehow I am just loosing my faith. Was born Hindu, married a “logical” atheist.and somehow now I feel God and faith are not doing any good to me. Anyway, Its just a rambling day I think.
Hello, I’ve been reading since about October when my son was first diagnosed with HFA at age 3. Jess, your words have brought me to tears and given me comfort that is so hard to find right now. I appreciate it so much. One of my biggest challenges right now has been the privacy one. My husband feels like we should really keep this close, and only share with our dearest friends and individuals who work with our son in an educational setting. I’ve struggled with this- at the post office last week when a woman was really unkind about him (“is he in preschool? and how’s THAT going for you?” with judgmental glare) and to others in the community or even in my personal life but not exactly “a dear friend.” I’ve blurted it out, cried, and apologized for it. I just don’t know what is right. I’m trying to take a stance that I’ll share this dx when he would benefit or when someone else knowing would somehow make a situation safer/more amendable to him, and to not share when it is really about me defending myself or my parenting. It’s not always easy, and the line isn’t always so clear.
So here’s the next challenge: he has been invited to a birthday party of a little girl in his preschool class. This feels HUGE- he’s never been invited to a party before. It’s at a bakery where they will frost cakes wearing aprons and chef hats, eat pizza and ice cream, and probably learn about how the baking process works. I’m so extremely worried. He is very interested in and enjoys playing with pretend food, and even helping me in the kitchen at home, so I know we have that going for us. Still, there is no way in the world with his impulsive and sensory seeking behaviors that I could sit back with the other moms and drink a latte while the employees at this bakery lead him in the party. My RSVP requires some sort of explanation. I just don’t know what to say.
Any advice?
(PS I’ll hit it hard with social story and even a prep trip to the bakery. I’m feeling confident in how to prepare him, just not sure how to address his situation with the mom throwing the party).
We are writing you from Omaha, Nebraska. This evening our local news station shared a video clip on the young autistic Michigan child who was videotaped by his teacher stuck in his chair. While the story is absolutely heartbreaking, we feel our media’s response is equally heartbreaking. They posted the link on FB as a matter of debate. This is sickening in our community, as we work so tirelessly to advocate for our children. I have copied our response to KETV below.
Do you have any recommendations on how we can proceed with this media entity?
OUR RESPONSE:
As a parents of an autistic child, we find it appalling you would make a debate out of the Michigan teacher’s behavior towards an autistic child in her classroom. Families of children with disabilities fight very hard to achieve dignity and respect for their children in our communities. Endless advocacy and awareness efforts are made every minute of every day to keep things like this from happening. People can be very cruel. We should be able to find a safe haven in our schools. We expect more from our teachers, who are held to certain ethical standards. This teacher’s behavior is simply unacceptable. The KETV reporter who set this up as a matter of debate should take some classes on disability awareness and sensitivity. There are simply some issues that should not be presented in this manner. Your reporter has crossed a very sensitive line. Does KETV want to be known for disrespecting individuals with disabilities? While you have not taken a stance, your willingness to create a debate, suggesting to some that it is okay to harass a child with a disability or any child for that matter, speaks volumes for your own standards. We are sickened by this post and intend to spread this as far and wide as we can.
http://m.ketv.com/national-news/teacher-films-autistic-boy-stuck-in-chair/24674750
I am not sure this is where I should post this or not, but I need guidance. I have been following you for some time, not because I have an autistic child, but because I have found so much of what you say to be useful to me in my life as a child care provider. Today at church I was inadvertently put in the position of having a fellow parishioner jump down my throat and scream at me for sticking up for a child that has autism (I did not know this child has autism). The gentleman told me that the child should not be allowed to attend church or be around the rest of us. I did not have any words. My heart is absolutely broken and I would appreciate some helpful guidance. I have read all of your posts about not being mean and hateful and hurting others, but my instincts are telling me to be as mean and hateful to that individual as he was to that child, and to me for sticking up for him. Any suggestions, advice or any morsel of help, would be greatly appreciated. I spoke to the father of the young boy and told him I was very very sorry for the way his son was treated. Is there anything else I can do?
The reason the ‘gentleman’ did not want that young boy in church was “because he is autistic”.
My thought would be to go to the pastor or whomever leads the sermons in the church. Not only did this man make that the child feel unwelcomed, but he made you uncomfortable as well. I think it may be time for a sermon on acceptance and understanding straight from the pulpit. I hope it’s just this one man but we can all use a message of inclusion and welcoming,especially in church.
Good luck. I hope this man gets the message about how to treat others with respect and understanding.
Thank you, I will certainly do that. Very thoughtful advice.
I would love help from parents and/or autistic adults on disclosure to my first grade boy about his autism. He was diagnosed “mild/moderate” PDD-NOS at 4, and is almost 7. He’s mainstreamed in school, and attends speach class (for pragmatics/social communication). He has a little bit of OT – mostly observation related to help with sensory seeking stuff. He isn’t very symptomatic at home (outside of sensory seeking stuff), so my husband doesn’t see the social stuff I see, as I tend to do more play-place/park visit stuff. Havent really talked to the hubby about talking to our son about his diagnosis. I think hubby is of the “he’ll do fine, he’s mostly quirky” attitude (quirky runs pretty strong in his family 😉
I haven’t talked to son directly about autism, but have talked about differences in general. I talked to him this weekend using some examples from the “toaster brain/hair dryer brain” post, which he liked and I think he got a bit. I’ve gotten recommendations to read “I love my own autistic self” by one of my favorite autistic feedback sites. It’s a good book, but it gets a bit heavy in some places – don’t know if I’m ready for it or if my son’s ready for that part.
Has anyone had experiences, suggestions, etc., that I can use to discuss this with my husband and my son? Thanks!
Hi there, I have a boy in 2nd grade with aspergers and we started discussing his diagnosis with him last year. We’ve always been honest about his diagnosis so that it isn’t seen as something that he should feel bad about, explaining to him that his brain works a little bit different from others and then we pointed out all the cool things that his brain is good at doing and explained that it can also make things more challenging for him but that we all have challenges. We used the books All Cats have Aspergers and Inside Aspergers Looking Out to talk to both my son and my daughter (who was in kindergarten at the time). They aren’t perfect books but they do help in explaining some of the “quirks” in a fun way with animals. I hope this is helpful
You might want to take a look at the website: http://www.asperkids.com — Jennifer O’Toole has a ton of very positive tips for Aspies and those of us who love them, and it might help you. Good luck!
How should I describe myself re. advocacy. I do not have a degree/training, etc. as an Advocate (capital A). But autism runs strong in my extended family and thanks to Jess and other parent and autistic bloggers, etc., advocacy has become very important to me. I belong to several groups on LinkedIn that are autism related, and there are a lot of non-autistic professionals there who it seems DO want to know more/help more, etc. I am doing my best to “signal boost” the neurodiversity-parent/autistic bloggers in every question where it fits, and also to put blog posts out there that have a strong message that caregivers/professionals might benefit from hearing.
I need to know what to call myself in my profile title, because I want to highlight my passion for advocacy, but I don’t want to be mistaken for a Trained Advocate and be thougth to be an imposter.
Thank you very much!
Oh goodness, I hadn’t even thought of this! I put “autism advocate” in my profile title, because it is the focal point of my life and the title that best describes what I do with my time. But I considered that it might be misleading…I hadn’t even thought of the fact that some people are trained Advocates.
Er, I meant that I hadn’t considered it might be misleading, typo there.
I hadn’t either, until someone commented about “since you’re an advocate…” And I thought oops-I’m not the licensed kind. Sigh. And I just liked your Facebook page 🙂
Thanks for the like and your comments! I was about to tell you, I’ve seen another people with the title “Autism Advocate” on LinkedIn. But then I noticed that the person’s name is Patricia, so I’m pretty sure that’s you, lol. I don’t want to share my name too publically (you could figure it out easily enough, but I like to allow myself the feeling of at least pretending I’m anonymous), but I’ll add the-person-who-may-be-you as a connection.
Personally, though, I’ll stick with the headline. Because I don’t think it’s necessarily a certification. People put ‘student’ as their profile title (or even, on occassion, unemployed) all the time, so to me I feel it’s just whatever title you feel describes you best and I personally can’t think of any better description than autism advocate.
So my Sister in Law invited my son and I for a play date at the park today because my Nephew wanted to play with my son. My son has Autism and ADHD. They played together and then after a while I seen my Nephew and another little boy running away from my son and wouldn’t play with him. My son got really upset because his cousin wouldn’t play with him anymore, My Sister in Law did not say anything to her son about not playing with his cousin so We ended up leaving. My Husband thinks I should just let it go and not say anything….but I don’t think I can. Any ideas on how I should address this with my Sister in Law?
You can’t force it. You just can’t. Talk to your sister-in-law about how bad your son felt. Suggest that next time it might help to set up a more structured environment for them to play (e.g., a place where there aren’t any other kids) doing a more structured activity (something that both kids will really enjoy but that they will have to interact to accomplish; e.g., have the kids make pizza, or a sundae for each other – not themselves – so they have to give and listen to instructions from the other kid and in the end get a treat to eat). Keep it short and sweet so that both cousins want to repeat the experience. Repeat often 🙂
LABELS:
I hope this is appropriate content to share here. I don’t intend to be controversial, but I felt moved to share my opinion, in the hopes that it will enlighten some. My apologies that it is so lengthy. Here goes.
There is an article circulating regarding a mother of a child with autism, who took things into her own hands, based on her “instincts” on her child and his interests. (I will attach the link below, for those who wish to see it.) I have many thoughts on this. There have been other stories of parents who have used their autistic child’s interests as a tool for success and skill progression. One story I saw recently, was of a father who imitated Disney characters. It helped facilitate language for his Disney-loving son. I think that helping guide someone to their passions, interests, and talents is bound to be motivating, whether that person is on the spectrum or not.
My issue with this story is the language. Labels are not bad. Labels often open doors. Many people fight very hard for that validation. Many people suffer years of being misunderstood and misdiagnosed to get that label. Labels should be given when appropriate, by a qualified diagnostician. That isn’t to say that all medical providers are appropriately qualified. I don’t believe in absolutes. I think any medical or educational provider in this day and age that states an autistic child will “never” speak should not be working with autistic children.
This story, while inspiring, has the potential to send the message that one can simply disregard science and professional opinion. Just risk it all and go rouge, it may be successful! Most of us are not raising savants with genius IQs and grooming them to be future award winners.
What does one do when their young autistic child has a penchant for lining things up? How does one nurture skill when a child takes out 50 books and lines them up across the floor, the whole length of the house, then loses her mind if anyone disturbs them? Sometimes feeding obsessions isn’t the answer.
It is important to note that this is a unique story. This woman clearly saw potential in her son. She also felt that she was qualified to nurture that. What is dangerous is for an uninformed and inexperienced parent to read this and immediately jump to the conclusion that a diagnosis is a bad thing and traditional therapy and intervention is not the answer. My daughter is doing as well as she is doing BECAUSE of her label, and all the therapy and intervention that has come with it. I am grateful for it all. It’s an ever-evolving process of gains, losses and changes developmentally, but we own our journey. Other than what this story states, I have no idea what this woman’s child was like as a toddler or preschooler, or what parallels can be drawn from him in regards to my own children. This is a great story, for THIS family. I just feel like it is poorly written, to the point of being irresponsible. My daughter was not “slapped” with a label as a toddler (as this article states). Disregarding professional opinion for intuition tends to turn out badly for most. This story could’ve been told without the inference that autism therapy and intervention are negative. I also feel like this story has a biased misrepresentation, given that it references events that happened over a decade ago, but is portrayed in the now, with a very provocative headline. It would be so easy to pick out a part of this story and run with it, in the wrong direction. I know my daughter. I know me. I am not an adequate replacement for any of the therapies, educational plans, or behavioral interventions she has benefited from.
I believe in science. I believe in data. I believe and trust my children’s medical providers and therapists. Our approach may not be for others, and that is ok. The saying goes, “If you’ve seen one child with autism, then you’ve seen ONE child with autism.” It is a very broad spectrum with many facets of behaviors. I strongly urge any parent of a child with autism to be open minded. If a child needs a label, ABA, OT, SP, PT, feeding therapy, dietary changes, behavioral support, meds, an educational plan, whatever it is, pursue it. Pursue it immediately and fully. Until the day comes when a child can self-advocate, the parent’s role as advocate is crucial.
These stories are nice. But I hope all people take from this is that if you have a child with an interest, see if you can use that to motivate them. And if your child is a brilliant prodigy, then that’s awesome.
(I don’t think the interviewer in the video clip is appropriate or professional at all either.)
http://themotherlist.com/mother-tore-label-nurtured-sons-hidden-genius/
Hi Jess! I am wondering if you have any idea where I can get some information for my teenage autistic friend. He is incredibly mad about having autism and I’m just curious if there is a book full of positives about autism. He is an incredible person and has taught me so much about myself and I would really love it if I could lead him in a direction of being proud of who he is instead of being ashamed of who he is not. Thanks!
Hi there. Just stopping by to let you know I enjoy your page and blog. I have also started blogging recently but still struggling with the topics and time. My son have been diagnosed with Aspergers and it didn’t take me long to connect the dots and see I’ve had it my whole life as well. Still getting used to living with it and still getting used to being a SAHM.
Actually I have no idea what I’m doing as a SAHM. I made soup tonight though. So that’s something…
Anyway.. feel free to visit my blog. Thankyou
http://stickyfings.com
i look forward to checking it out. thanks!
I’m not sure if this is a rant or request for help or both.
I have extended family with multiple children on the spectrum, each affected differently, and one who is profoundly impacted (he’s a tween). He’s at a residential care facility, and from what I’ve heard, this is a good thing-he gained weight that he had lost from not eating, he was able to communicate verbally. They live 1000 miles from me so I have no direct impact whatsoever, but I hear about things a bit. His parents would not listen to any input from me because “I don’t know what they go through”, which I don’t from personal experience. I only know what I read from autistic bloggers. His mother is not one to research things. She didn’t know about gastric issues and autism until her kids were 10 and older, and they’ve been diagnosed since they were preschool age. His grandmother told me he bites his mother – I shared with her that they need to find out why, because he’s not biting for no reason. I don’t know all the circumstances, but I know his mother is overwhelming to neurotypical people (from personal experience), and am guessing that it’s all just “too much” for him.
The grandmother also said something about “he’s barely human” which rendered me speechless and then I got pissed. I think it’s a protective stance, because to think that he’s completely aware is too much for her, but from what I’ve read – he IS probably completely aware. I wish I could advocate for him in some way, but I have no idea if I could, or should, or what to do. I wish I could talk to the home he’s in and find out what their attitude is – if they presume competence. I’m just a big ball of emotion about this and I don’t know what to do with it. It’s a huge can of worms.
If anyone has any thoughts, or suggestions, or anything, I’d like to hear it. If I can do something, I want to. I want to help, I just don’t know if it’s possible…
The only things that I would suggest are that you could send the mom and Grandma a blog post or two or perhaps an article or book that you have found valuable with a note that says, “I found these really insightful – thought I’d send along in case you might be interested.” From what you’ve said here, it’s pretty clear to me that there’s far, far too much that you don’t and can’t possibly know about these people’s day to day lives to make assumptions about what’s really happening in their home or to insert yourself into their situation.
Yeah, I thought that was going to be the case. The whole situation makes my heart hurt. I know the PEOPLE well, but not the situation fully. It just sucks large. Thanks for commenting and giving some perspective.
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IEP question: I need some opinions, please. I have a 8 yr old high functioning autistic daughter who is in 2nd grade, going to the resource room for a few subjects. All year, she has excelled or met her goals on her report card. We met her teacher for conferences and as far as we knew everything was moving along beautifully. Today we met with the school psychologist (who requested we meet prior to her “official”IEP meeting next week and basically told us that they think our daughter would do better in a structured class next year (third grade) with some mainstreaming. She said third grade has a whole lot of independent work, and our daughter relies on her teacher or other students helping her. She also said socially Marinda isn’t where she should be as compared to her peers. We asked for examples, she couldn’t give them, she is just giving us the message she received from our daughters teacher. We asked if there have been issues or concerns, why are we just hearing about them 5 days before her IEP? I also sake her if she had looked at Our daughters grades, she had not. Our impression was that this school psychologist is recommending structured class for next year, but yet doesn’t know our daughter. Our daughter holds her own in the classroom, but does not have any “close” friends, ones who call to play on the weekends, but does definitely play with kids during recess. The structured class they are recommending will have 7 students -all boys, but her. So many things concern me and we will be deciding this next week. Why have we never been informed of any social issues until now–5 weeks before school ends, if grades are where they should be, why change what we thought was working (part resource, part mainstream) and what are the pros &cons of a structured class. Where do I turn in trying to decide the right thing for my daughter? Currently, she loves going to school, she’s a hard worker and wants to do well. If structured would be the best thing for her, I’m all for it, but being the only girl and then spending a lot out of mainstream, does concern me, how do I know if a structured class is the right thing?i am also upset that no on from the school ever voiced concerns until now. Comments/insights please! (Ljpriano@yahoo.com)
Hi! Your daughter’s program sounds a lot like my 2nd grade son’s plan. It does seem odd to hear all this so close to IEP time and from someone not very familiar with your daughter.
I guess I would go directly to the two people who know your daughter best and ask them their thoughts on the current situation versus a change: her current teacher and your daughter herself.
I don’t know your daughter but my guess is in her way she could let you know her opinion. With my son I could never just ask him “how’s it going?” But I could ask about this or that or and get a sense of what’s working and what isn’t.
I also always try to remember that whatever changes are made are never set in stone. If something isn’t helping, you can always change it. It’s not easy but it’s possible.
Good luck!
Do you live in a state where high stakes testing goes into full swing in 3rd grade (I’m a high school special ed teacher)? That does tend to have more influence than it should when it comes to student placement, even though they may not admit it. Personally, I tend to lean toward letting kids try a class/grade first. You can always have an interim IEP during the school year and change her placement if she isn’t doing well. Good luck.
Hello Jess and fellow diary followers/bloggers. I hope you can educate me and have some suggestions/ideas.
I started attending a special needs business networking group, and one of the members who is part of an autism support center asked if I could help with guest posts on their blog. I told them yes, and asked if I could refer other posts to them. They were excited about that. I don’t know about guest blogger “rules” but wanted to ask if I can refer a post or two of yours to them. If anyone has a favorite blog or post that they’d like to suggest, I’d love to hear about it. I assume they would link to your blog /credit your page, but I will make sure.
What are your thoughts?
Thank you for sharing your thoughts and experiences. They are very much appreciated.
Trish
Hi there
I am the mother of an 5 year old autistic girl. She is extremely high functioning. We are at a very difficult cross roads and need to make a decision. We tried to integrate her into the normal main stream environment. She was doing wonderfully last year, but she was a year younger as her peers in the group, so she had to stay behind in the same class for another year. It seems like she isn’t coping. Behaviour changes etc. She seems ‘depressed’ and unhappy.
I think the fact that the few friends she managed to make moved on to the next year group in school had a lot to do with this… We took her entire support system at school from under her. My question to you is this – are we doing the right thing to actually take her out of the schooling system and to homeschool her? This is what we are considering? Main reason for this consideration is the fact that we asked her whether she is happy at school and her response was that she wasn’t. Upon asking her what she likes at school her instant response was work.
We are from South Africa, so our schooling system don’t offer specialised environment as you would have in the States. Upon speaking to her teacher, this is the info we gathered:
1. She hasn’t really managed to make friends so far this year.
2. When they are for instance singing in a group – she will stand with her ears closed the whole time. \
3. She is playing inside all the time and never goes outside. If she does-she will do so with her ears closed.
4. When they are leaving the class, the teacher actually has to take her by hand in order for her to go with them, as she doesn’t want to leave the class.
5. She resorts to tears often.
6. She is extremely slow when doing assignments, but I know it is tactical not to go outside.
6. Looking at her as a whole this year, compared to last – she is a completely different child. When fetching her at school in the afternoons, she is always the last one to come out, literally dragging her feet, whereas last year she was running out in front with a smile.
Another thing we noticed. She used to have a very strong odour on her head as a baby -prior to us starting with intervention. That smell has completely disappeared for years. It has however returned the last 8 weeks or so. We took her out of school for a while and that smell disappeared within days.
I would love you hear your insights in this – from both parents with autistic children and autists alike.
Thank you for taking time to read this.
Ears closed during singing or while outside (and not wanting to go outside) sounds like a sensory problem, not related to getting held back. Does she get occupational therapy or anything sensory? Have you considered sending her to school with some earplugs and seeing if that’s the source?
To me, this doesn’t read like a child who needs to be home schooled. This reads like a child who needs accommodations at school, and therapy to help her deal with noisy environments.
My oldest daughter is very smart. She is charismatic and funny and just draws people near her. However pleasant she seems on the outside, N struggles with empathy, lack of concern for consequences, honesty, and overall selfishness. I know what you’re thinking… this is all typical behavior for an 8 year old girl…
Let me explain…
My X loves to lie. He lies about everything. He needs to lie. Not the normal “white lie” everyone tells to spare feelings now and then, but stupid lies that don’t even matter. Lies to make himself look better. Lies to make other people do him favors. Lies to manipulate people.
He also needs to be the center of attention. He’s intelligence allows him to manipulate people and situations to his advantage. When he’s not in the center, he gets jealous and lies and manipulates more people.
His most charming qualities (sarcasm) is his cruelty to other people and his air of superiority to everyone else. He would literally say “I don’t care… what’s my name?! That’s right! I’m A F-ing Hole!” Ok, so that’s not his real name, but its fitting – and you get the point…
Over the last year, N has been exhibiting these same qualities to a lesser extent. She is more than a little jealous of P, and she always tends to weasel her way into the center of attention.
In September, one of my good friends got married. N went around telling everyone, I mean everyone, that she was worried because I was drinking (I wasn’t) and I was her ride home. There were people from my work there. People from my small community with big mouths. Teenagers I coached. I was so embarrassed.
We talked to her about it and grounded her to her room for a week, but the discipline (as always) failed to hit any mark. She knows not to lie about me anymore though, (atleast where I can hear her).
About 3 weeks ago, I get a call from the principal. Apparently, N received a write-up for threatening another student with hand sanitizer in the eyes. A second student (not the one she threatened) threatened to shoot her in the head, resulting in another whole huge ordeal.
She had to write apology letters to each person affected by her actions and whatever the school decided was necessary. She wrote and rewrote those letters 6 times. She was more upset about the writing than learning anything, another discipline failure.
N brought home her school work this Friday. Her spelling sentences are as follows (spelling corrected, of course):
1) chase – I will chase H, K, and M.D.
2) chest – K will get hut in the chest.
3) chill – H will get a chill.
4) sheep – M.D. has a sheep.
5) shape – H head has a weird shape.
6) think – I think K is weird.
7) white – K is white.
8) thing – M.D. is a thing.
9) while – I will hit J while I talk to S.
10) wheat – K will eat wheat.
11) where – Where is M.D.
12) shirt – I like M shirt.
13) thought – I thought I saw Santa.
Note from the teacher:
N,
Be positive with your words.
MW
After consulting child psychologists, a friend studying early childhood development and, of course, Google, we have finally received a “verbal” diagnosis of a mild conduct disorder. Although I left my X when she and her sister were young, unfortunately I was unable to do so before her environment sparked whatever genetic predisposition she had to a personality disorder.
Her behaviors are becoming more predominant, as I stated above, and I have had appointments with her pediatrician and pushed for referrals for psychiatrists and psychologists, but I’m getting flack and push-back from her father, who has to approve any medical evaluation/treatment due to our custody agreement.
I need more research to prove to him she needs help. If left untreated, it can turn into more severe disorders, such as antisocial personality disorder and narcissistic personality disorder. The pediatrician told me so.
So, I am asking for your help. Can you please reach out to the people you know, the professionals you know, and ask for something, anything, that may help me… either to get her to a professional, or help me help her on my own? I’m looking for personality tests, reading materials, teaching lessons on character building… anything you can pass on would be appreciated!
I’m at a loss at the moment.
Thanks guys!
Heather
My son (2 1/2) will be seeing a pediatric development specialist next week for the first of two evaluations. He’s in speech therapy now, and we are fairly sure that he will recieve some type of ASD diagnosis. I’ve been engrossed with this blog and the other blogs it has linked me to and have found the information extremely helpful, and even comforting. My question is, where can I find information on therapies? I don’t have a good understanding of what options there are in order to help us decide what is best for our son. I want him to get whatever help he needs to be the best him he can be – not to change him into something he sn’t. But I don’t know what’s even out there in order to research and discuss when that time comes. Any suggestions on where to look?
Karen, I’m so glad you’re here and finding hope and relief in autistic voices. ;). I’d suggest looking into some recommended by my autistic friends – RDI, Floortime, Sensory Integration therapy and functional communication Floortime. The following, to which I was directed, should guide you well —
Click to access AAM-Early-Intervention.pdf
and
Click to access AAM-Optical-Outcomes.pdf
All the best to you and your tyke.
xo,
Jess
This night be helpful too …
http://theinvisiblestrings.com/interview-allison-behymer-autism-diagnosis-stories/
One more. I asked my friend, Ariane from the amazing blog, Emma’s Hope Book and this was her response, insightful as always.
I think one of the hardest things for new parents is to be told, don’t do any therapy. I don’t envy parents new to the diagnosis at all. I don’t think I could have sat there and done nothing at all, but truthfully, our experience was that the therapies we did, really were not very helpful. The truth is WE needed therapy far more than Emma needed ABA, DIR or any of the other various things we tried that were available to us when she was diagnosed. The two things I tell parents that they absolutely MUST do is A. Presume competence and if they do not know what that means I’ve tried to write about it in ways that are accessible – http://emmashopebook.com/2013/03/07/presume-competence-what-does-that-mean-exactly/
and B. seek out Autistic adults. Julia’s blog is a great starting point, but so is Sparrow’s – http://unstrangemind.wordpress.com
and E.’s – http://thethirdglance.wordpress.com
I also point people to Amy Sequenzia and Judy Endow who both blog over on Ollibean.
Hope this is helpful.
If they want other resources, I’ve got a ton on my Resources page. I begin with non-speaking blogs and go from there. Many are written by teenagers.
I want to add that there are some really terrific speech therapists and occupational therapists out there and I know there are kids who have been helped enormously by having both. The same can be said for PT. I would just make sure they presume competence above all else.
Thank you so much Jess! For your response and this blog! EI is out for us. We went to them when he was just over 2 and were thoroughly disappointed for many reasons. However, when we went back to his pediatrician a few months later, he took our concerns seriously and got us in with a speech therapist, (who has done wonders for him) and got us a referral to the specialist. I will lookinto the therapies you mentions. Thanks again, for everything!.
And sorry for all the typos and such – I’m at work (being oh so productive) and we have an old version of explorer – half of what I write is covered up so I’m typing blindly…
😉
So, he was diagnosed ASD, like we thought he would be. I was surprised by how hard it was to see that on paper and to tell my family (parents and sister) when my husband and I both knew. Just made it real.
Anyway, that you for your help with this. We are still gathering information and trying to figure out what to do. Between insurance and work schedules and just doing what will be best for him – it’s all a bit overwhelming! But I know we will figure it out and in the mean time, he’s happy and still getting speech once a week – in which he is making great progress.
I just wanted to update you – we are now part of the club. And I’m thankful the members of this club are great 🙂
Welcome. It’s going to be just fine. 😉
Thank you. Thank you for creating a page where parents of autistic children can come together. I have a 8yr old son who calls himself AWESOME, and he is just that!! I loooove his unique personality. I myself just need some advice on how to cope with the many personalities…the side that cannot deal with constructive advice. I have a way that works for us but Awesome melts down if he isn’t right…how do I deal with that?
Working on making it clear that self-worth isn’t tied to being correct would probably help. Praising every attempt instead of only the successful ones may also help. And providing a game plan for if something is incorrect (if something’s wrong, we say “Aw, man!” and try again, for instance) long before the correction occurs may also help. A social story may be beneficial here. (You may already be doing these things, but in case you aren’t, I thought I’d mention them.)
I am a big advocate of involving the child in the problem solving process. Asking him how to solve the problem goes a long way in changing his thinking, which is the essence of solving the problem. Getting him to come up with the new rule gives him ownership rather than something to fight against.
ABA is a form of classical conditioning (i.e. Pavlov) and is one of the few treatments that will work for non-verbal people and those who are too young to communicate their problems. That being said, it is a tool, and like all tools can be used well or badly. In the case of a 16 year old young lady, its use would be quite limited. If she has unconscious habits that she wants to overcome, it could be a great help. For other things, not so much.
I don’t know what challenges she is facing, but there are tools and resources available online and from local autism groups. Feel free to ask more specific questions here or e-mail me directly at Scintor@aol.com. I am on the spectrum and my youngest is a young lady on the spectrum who will turn 13 next month.
John Mark McDonald
Scintor@aol.com
Bravo
Can anyone tell me about ABA? I have a 16 year old daughter who was just diagnosed with ASD (according to DSM-4, PDD-NOS, although I don’t know if that makes much of a difference) and we’re looking at ABA therapy. I have seen it used for young children, but I’m not sure how it will work with a 16 year old. Does anyone have any experience with it and grown children? Thanks so much for making this a space that includes and welcomes all.
ABA is a form of classical conditioning (i.e. Pavlov) and is one of the few treatments that will work for non-verbal people and those who are too young to communicate their problems. That being said, it is a tool, and like all tools can be used well or badly. In the case of a 16 year old young lady, its use would be quite limited. If she has unconscious habits that she wants to overcome, it could be a great help. For other things, not so much.
I don’t know what challenges she is facing, but there are tools and resources available online and from local autism groups. Feel free to ask more specific questions here or e-mail me directly at Scintor@aol.com. I am on the spectrum and my youngest is a young lady on the spectrum who will turn 13 next month.
John Mark McDonald
Scintor@aol.com
I need support.
I know this has no answer.
I have 3 special needs kids.
My oldest son is 11. He has a mood disorder in addition to autism. He is violent. Right now, he is spending a week with my mom. I feel guilty but our family is running better.
I am sleeping at night because I am not in fear of him waking up and hurting someone or breaking something. I am not afraid he will run away. Not afraid I will find his dead body when I wake.
My daughter, 9, is medically fragile. She is also Deaf. She is in the hospital a lot and when she is, I can’t leave her side. Sometimes, I have to go days without eating, showering even using the bathroom. But, I feel guilty because I resent her for holding me hostage.
And, I am constantly defending her. I defend our choice to raise her in a bilingual/bicultural world, to forgo hearing aids and allow her to choose her communication modality. I defend her need to watch preschool TV and movies like Sophia, Frozen and Godspell on a loop. I defend her choice of toys and books…and, and, and…
Then my little guy, 7, is also on the spectrum. He is so good but anxious and incontinent. He struggles with a lot of basic things.
I don’t know…I just need to feel some love today…
oh, honey, you’ve got your hands full. so glad that your mom is close and can help. don’t feel guilty for asking or for feeling some relief in a momentary calmer home – we all need time to breathe. holding you and praying for ease for all of you.
You sound like a mother who trying her best to do right by all her kids. Does your state have any programs that could help with respite care? It can be a long process to get funding but it would be worth it in your situation to help you get some rest and support.
We have used 2 different types of respite. The first was in home. That almost killed my daughter when someone showed up ill. The second was in a home for kids with mental illness. That ended after we found out they were basically isolating him and when he had issues, they called me then when I didn’t go get him, they filed a report stating that I was not empathetic to his emotions.
Love. I’m so sorry, it’s so difficult. I think it’s safe to say I speak for everyone when I say we all support you and care about you, and whenever you need a pick me up, or to talk to someone who ‘gets it’, come here. 🙂 *hugs from me and Caley* (Caley is the ultimate hugger, so imagine right now a hug that literally takes your breath away and lasts for as long as you want it to last and is full of warmth and love and caring and compassion.)
Please don’t feel like your situation is hopeless. There are answers out there, but the road to them is long and hard. (I am desperately resisting my urge to try and fix things because that isn’t what you are asking for.) This community is here for you so you do not have to feel alone. Many of us have multiple special needs children and can empathize with your situation. Please come to us and we will be there for you. If you have specific questions, those of us who have been down similar roads will be glad to give you ideas from our own hard roads. There are answers, but there are no easy answers. On the other hand, you need not walk alone.
John Mark McDonald
Awesome!!!
Hi all!
My son is on the spectrum. He is often refered to as “high functioning” although im pretty sure we are retiring that label in the autism community.
I am really offended by friends & family who insist he is not Autistic. …
Nobody super close to us would ever have the “over diagnosis” conversation with us because they go through life with us. And they live Rocky’s challenges with him.
I never know what to say. I now know for sure, that it offends me. SO, I would like to know if anyone has any GREAT retorts, expressions & so on that help them in situations like this.
I know Rocky is awesome, im his biggest fan! But he is also Autistic!
XO Everyone!
-Cori
You’re right about retiring the label – you’re really up to date! 😀
Well, I personally try to ward it off. (My sister’s Autistic.) I find educating people in advance of the confrontation to be good. For a while my personal Facebook page was FULL of autism understanding posts, so that people who read it would be more likely to learn in a non confrontational way. Posting to all your FB friends also means that it doesn’t seem like you’re targeting anyone, so I think people are less likely to get defensive. I know it has a curse word in the title (my apologies – there are none in the actual video), but I think this video was very effective in holding up a mirror to people and letting them see the offensiveness of the sort of things they say…before they get a chance to say them. http://www.youtube.com/watch?v=5fTBM_3sdwE It also made me laugh and laugh…because it’s so true, and if you can’t laugh, you’d cry.
I poured all my energy that I got from those situations – the infuriating ones where people treated my sister badly – into educating others. And I think it’s paid off. The people around us are definitely more understanding of Caley now and don’t question her diagnosis.
But I would say, an in depth conversation is probably better than a retort. If you can, I highly recommend teaching, not fighting. I have had some friends who doubted Caley’s autism, and I basically gave them an autism crash course. It worked and they left understanding autism much better, and a better ally to the entire autistic community. Which is awesome.
That said, if you’re still looking for retorts (which I am unfortunately no good at) I’ll ask Caley for some. When she gets done with her Minecraft binge, lol. 🙂
Thank you! The video is classic! & yes, I shared it on my FB page 😉
I’ve thought alot about my post to this page. The kind of whiny nature of it
Im greatful that my son is who he is. It just stings a little when people say things like “he’s doing well in school? So it was just a phase…” or I have a nephew with autism and Rocky is NOT Autistic.
But you know what!?!
Others say things like “Rocky’s progression in school is great” and “you guys are awesome parents!” ( for educating ourselves & being his advocates every step of the way)
I love the video, perfect way to get over myself!!! Thanks again for reaching out, means alot to me.
I forgot to say that I love your suggestion to take the opportunity to educate. I’ll try ♥
I have realized that the beauty in the situation is that everyone is right.
Yes, there is nothing wrong with him, he is autistic. That’s the best lesson
♥
It won’t let me reply further to your posts, but I just wanted to say, wow, what a great paradigm shift. Those moments would definitely infuriate me, too. I remember I brought Caley to school with me, and she’d talked to a guy for literally all of a minute. And then I compared her autistic traits to someone else’s and he said, “You’re wrong, Caley doesn’t really have those traits.” I was thinking to myself, “Excuse me? I’ve known her a lifetime and you’ve known her all of a minute. How can you judge?”
So what I’m saying is, don’t think your reaction is the problem. Their words are definitely the ones at fault. Talking about your frustration with it is perfectly legitimate and I would not at all consider it whining. I’d do the same thing in your shoes. But, shifting paradigms the way you have, and seeing the broader picture of people who are supportive and the beauty of the situation, is absolutely the healthiest reaction you can have.
And I think you actually just came up with the best ‘retort’ all by yourself. “Yes, there is nothing wrong with him, he is autistic.” Perfect. And a really good jumping off point into a conversation educating the person, too. 🙂
And let me add to those people with the positive perspectives. I may only know of you here online, but you sound like an awesome parent. 😀
I’m looking for information for a friend…
they are looking at visiting an Autism Recovery Center because they’re desperate. they’re hoping for a biomedical solution to things but I’m concerned that this is just going to be a waste of money for them. Has anyone had experience with this? Any information would be welcome.
thanks
“lynn” – i’d be far more concerned about the psychological effects of taking a child to a place designed to “recover” (“fix?” “cure?”) him or her than i would be about the money one would pay to do so. i’d strongly urge the parents to seek the voices of autistic adults and to read about how devastating such practices can be before proceeding.
I don’t know if this will help but here’s an amazing blog with her regrets about biomed interventions. There are a few posts here: http://emmashopebook.com/tag/biomed-interventions/
thank you. i will pass that on and i’m hoping it will help.
I’ve never used Bio-med but we Have used dietary and have had Amazing results.
With that said – I would be cautious if we are talking about more invasive techniques
Sent from my iPhone
>
believe me, I’m very much concerned about that as well. I was very disturbed by what I saw on the site and the connections that this “Dr” has but I don’t know how to approach the conversation in a way that would really influence them. It seems easy for me to say No to such things when our life seems to be much easier and things appear to be going well.
Refer her to us. Seriously, give her my email (autismspectrumexplained@yahoo.com) and I’d be happy to talk to her about her (non-‘recovery’ and, yes, the quotes are purposeful) options. I have a bachelor’s in psychology and in communication sciences and disorders (which means next to nothing, but people seem to listen to me more when I say that and it sounds like she’s looking for an authority to help), run multiple websites explaining autism and programs for autistic people, and am a direct caregiver to a child on the spectrum (who has made some pretty big gains, not through any ‘recovery’ but through a whole heck of a lot of work on my part and that of his teachers and parents – I’d be glad to give her advice on what I/we do).
And my sister, who shares that email address and also answers questions and gives advice (though she needs help writing), is Autistic. As such, she is the true autism expert out of the two of us, or out of anyone, for that matter. Give her the email and tell her there are experts who would love to talk to her for free. 🙂
Alternatively, thinkingautism@gmail.com would probably be happy to answer questions for her as well. They’re the editors of the book Thinking Person’s Guide to Autism and they’ve been very generous in answering my questions in the past. http://www.thinkingautismguide.com/p/about.html
Give her whichever email you think she’d be most likely to go to.
Hello all.
I’ve been so inspired by Jess and Diary that I’m building a website whose focus is a doorway for parents/grandparents to understanding autism. I know my journey has been less than direct, and maybe that’s part of how it works. But at the same time, getting families connected to autistic bloggers, neuro-diverse parents, and of all different variations of the spectrum so as to break down some of the ” not like my child” thing-I think this is needed.
I really want input from autistic people, and neurodiversity supporting parents of autistic people to have the voice in it. Autism has touched my extended family in many ways, but I don’t have a lot of experience with the more challenging aspects of autism. I want to make sure those voices/experiences are represented authentically through direct input.
I have a couple of autistic adult advisors on board, as well as bloggers who have given their OK to include their sites (Emma’s hope book, Invisible Strings, Autistm Spectrum Explained – Yay).
The site is to be a safe place for autistic people and supportive for parents.
I’d appreciate your thoughts on this – what were you/are you looking for in your journey as an autism family? What do you think would be helpful in a site like this?
If you might be interested in contributing or having your site link included, please email me at autistikids@gmail.com.
I just posted this on Diary’s facebook page and Jess suggested I post it here too:
Once again you provided such wonderful insight and advice! I love your page! But honestly, at this moment in time, I need help. I feel like I know your story and Brooke’s very well, so this question may not be very relevant to you, but I know that some of your readers will have insight. Could you please help me find the help I need? My eight year old son has autism. He is also aggressive. This has always been an issue, but not a constant as he tends to move in and out of patterns of behaviour. Unfortunately we seem to be stuck in a pattern that has lasted more than 2 months. His aggression is more severe than it ever has been and he is hurting the people he loves and the people that work with him multiple times a day (hitting, kicking, scratching). He is a big boy so his behaviour definitely has an impact. We are at a complete loss of what to do. We have tried everything from reward/reinforcement programs, to complete ignoring, to isolation, to yelling and everything in between. I am feeling like a hopeless failure at the moment, and I imagine, somewhere deep inside, he is too. If anyone out there has some suggestions for me or would like to share their story with me, I could really use the support.
Jana,
I am sorry that you are going through this. You are not alone that is forsure. I want to share with you my experience. When my son was 4 we went through months of extreme meltdowns. I was afraid the neighbors would call the police and after being confronted by one I knew how close it came to that. I felt desperate for help. I attended a meeting with a behavioralist who I believe is named Dennis Sweningson. If this is the right guy(I’m 99%sure it’s him) his email is dsweningson@lbschool.net
I’m going to email him to confirm and get back to you.
He is amazing, so much experience and just a special guy. One group meeting and I walked away with many tools that drastically catapulted us out of the dark abyss we were in.
Because every child is different I don’t know if what helped me will help you. My child was verbal but without expressive language at that time. My first and most important change was EXTREME CALM & TRANQUILITY.
Sounds crazy but I had to create a very safe and calm environment to detox my little guys Psyche. I was super hormonal with an infant with no support at the time so you could imagine how out of control the house got during violent meltdowns.
Extreme LOVE,
CONSTANT REAFFIRMATION. About every three minutes, complimenting good behavior
Replacing threats of punishment with positive options.
Instead of ” if you can’t finish your lunch we won’t go to the park” you say ” would you like to go to the park? Ok, finish your lunch.”
I had a friend who said to me “uck!!! Your one of those parents I can’t stand. Good job Rocky. Wonderful job Rocky.”
Well so be it. It took extreme measures to get a handle on some pretty extreme behaviors.
And for us it was a temporary measure. Now my son can adjust to stress levels just fine. We don’t have to act like saints around him anymore. We gave him coping skills while we created a very over the top calm safe environment. A behavior chart with daily rewards, asking him to use his words when he is mad… In the beginning We would tell him to scream! “I’m MAD!!!!”
He liked that lol
From there he was able to say I’m mad with out screaming.
Forget about yelling, taking toys away and even time outs…positive reinforcement baby! Good luck mama
I shouldn’t have said good luck. You are an awesome mom who CAN DO IT. You care enough to reach out, that is powerful stuff. You can do it, find your answers, they are out there.
I forgot,
Thirsty, hungry, tired or sick. First things to consider.
Stress, anxiety, change to routine and or environment. Problems at school.
Some of The most obvious triggers.
Okay Jana, good night.
(Unless I think of something else:)
Hi Jana. My son, now 13, has wrestled with this issue too. For now, he only has minimal communication skills, so it is very hard to get at a root cause. He is generally sweet and affectionate, but can have these scary bouts of aggression and rage. Two things for you to consider:
1) You might want to consider medication. I do not say this lightly, and I am all too aware that there are significant side effects to many medications commonly prescribed to help children with autism. Risperidone (brand name risperdal) has been life-changing for our son. He is calmer (but NOT at all sedated), happier, has an increased ability to focus in school, sleeps MUCH better at night and his instances of aggression have become extremely rare. However, he has gained weight due to side effects, which is problematic. We also have to have blood tests done every six months to monitor other potential side effects. He tolerates these very well, but other children may struggle more.
2) When our son does still have bouts of aggression it is often linked to physical discomfort or pain that he is otherwise unable to communicate with us: ear infections (since he doesn’t tend to get fevers with them) and severe constipation (he is independent with toiling so we weren’t aware) are frequent culprits. Seasonal pollen allergies used to be a trigger as well, but now I monitor pollen levels with WebMD’s app and given him over the counter allergy meds as soon as levels start to climb.
Good luck! I know how heartbreaking it is to feel that they are being aggressive due to some unseen problem that we can’t even identify, let alone fix. Hang in there!
Thanks Jen….we are considering meds for my son but it is a very scary thing and I can’t help shake the feeling that we would be medicating him more for the safety and sanity of those around him than for his own benefit. Reading your response made me remember that he is suffering on some level (sensory issues?, allergies?, in January he transitioned from IBI to fulltime school) too, and that maybe meds will help make life easier for him. I worry a bit about resperdal too as my son is already a little overweight, but one thing at a time I guess. Thanks so much for your support and reminding me that I am not alone.
Thank you Corissa…I really appreciate all you had to share. We definitely always try to be positive with our son but our patience is wearing thin. Thank you for the reminder, that although difficult, modelling appropriate behaviour is always better than engaging in a power struggle!
Jana, I don’t know much about meds and aggression, but I can say that sometimes meds (in moderation combined with therapy, compassion, and respect, of course), can give the foothold needed to learn coping techniques. You need to be in a place where you’re able to learn before you can learn, if that makes sense, and meds, for my sister, at least (with regards to ADHD and to anxiety) did that. She doesn’t use them any longer, but at the time she needed their support to be able to learn to cope…and now, she’s completely off the ADHD meds. Hope this helps. 🙂
Hey Jess,
Your reach is so much bigger than mine. I am on a summer anti-bullying mission and I was—wondering— if you could take a look at this post, and if you feel it in your heart, share it about.
Over the summer, I can not over-share the following article, so I ask (we ask!) that you forward this around, in hopes that over the summer, enough kids — and their parents– will read this.
Bullying takes lives, and those it does not take, it destroys. In a ten-month school year I watched my son regress developmentally from functioning at about an 9-10 year old level [Aug 2013] to a 19 – month- old level [May 2014], due mostly to the bullying-induced-anxiety from being bullied, teased, physically assaulted, and iced out by his peers all year round. He has clinically significant symptoms of PTSD, anxiety and depression as a result, and requires hours of additional therapy every week in order to simply be okay enough to do things like get dressed, or put sunscreen on his skin. His anxiety at the end of the school year was so terrible most days I could barely get him out of the house–if I got him out at all.
Bullying destroys lives.
Please, please take a minute to read through this and, if you have in in your heart to share it, PLEASE do so.
Together I believe we can make a difference–or at least I plan to try.
With deep humility and utmost respect,
Rachele
My son had an aggressive outburst at school the other day and was sent home. He had made a chatterbox which is a paper game and had taken it to school. One of the children had taken it and in his scuffle to get it back it ripped. You can imagine the repercussions. He began to attack the child biting and pushing him down to the ground. They had to send him home as they couldn’t calm him down and they had to separate him from the other child. It’s the first time he has ever done this to another child. I spoke to him about it and explained that we can never do that to someone and that we need to find another way to deal with the anger. I took away his gaming privileges for 2 weeks which is the school holidays over here. Not sure if I have done the right thing though. I know that he can’t do things like that but am I punishing him for something that is out of his control. I’m so lost. Any help would be appreciated.
I don’t know if it was out of his control – probably at least to some degree, but since I don’t know your son, I can’t speak either way.
What I would focus on now is helping him find another way to deal with the anger, that way you guys can constructively move forward. There are some really great exercises and printables about ways to control anger here that I think your son may benefit from. The bonus, of course, is they use Angry Birds for the metaphors. 🙂 Hope this helps!
http://thehometeacher.org/2012/02/dont-be-an-angry-bird-free-printables.html
Just realized I deviated from support to advice, sorry about that! They may or may not help, I don’t know…but when you read through it you’ll have a good idea if it will work for you.
In the meanwhile, sending virtual hugs to you and your son, it’s not easy being in that situation.
Thank you! My son loves Angry Birds so this will definitely be something we can use!
Thanks for those. I will be printing them up tomorrow and getting them in place immediately. I will try and help him figure out ways to deal with his anger but it’s proving to be quite a challenge. I’m hoping with something like this in place as a guide it will help him deal with these situations. I’m so lost at the moment so I really appreciate your help and he does love angry birds. Thank you 🙂
Parenting is so hard isn’t it? I think that you should trust your instincts, as you did. Taking away privileges seems to be a reasonable consequence and will help him learn that negative behaviour results in negative consequences. My only advice would be to put a reward system in place for when he is able to control his responses to difficult and upsetting situations. Maybe even “setting up” some situations where he has to deal with disappointment and guiding him through it would help. Good luck! I know how easy it is to question ourselves during these situations, but remember that as long as you are reacting with his best interests in mind, then you will be doing the right thing!
Thanks Jana. It is hard and at the moment we are a little lost. He has had a year and a half at school where it was mostly smooth sailing and now this last term his behaviour has changed. He has been refusing to do work and wanting to play on the computers or with lego that he discovered. He has also been having meltdowns and now hurting another child. I wanted to try and move away from a negative approach so I had a reward chart. It worked great for a couple of weeks and then he went four weeks without a reward and I just felt like I needed to make it clear that he must never hurt someone else so I had to give him a consequence. It is so hard to know if what you are doing is right. I think his reward chart was too broad focusing on too many things. I like the idea of rewarding him for controlling his responses to situations so I think I’ll have it specifically for that. And I will definitely try role playing the situations. That is a great idea. Thank you for your help I really appreciate it 🙂
Would appreciate prayer this week for my family. 1) my mom, my rock is going in for a biopsy on her breast. I am the luckyest person to have a family that is so supportive of my son’s autism. My mom has been with me every step of our journey.
2) I have family court in Thursday for my dead beat ex husband… Been along time coming. I am praying I don’t have to go. I just now found out about it and it is the same day we were going to leave for Vaca. My son is very easy going as long as he knows what is going on. He is not going to be happy if we have to start out later…. I really do not want to tell him why nor do I want to lie to him. I will find out later today if I have to be there.
3) I realize that I am very lucky I can even go on Vaca with my son. He really does well except for construction zones or if he gets it in his head that we are going to crash. I will be doing most of the driving. Please pray that his anxiety is low on Thursday and Friday. We have been working on this very thing in his therapy. We have a calm down tape and have been working on calm down techniques. He hits himself when he is upset. I will be with family we “gets” it.
Sending hugs and warm thoughts your way. Best wishes for your trip!
Since Jess pointed people over here this morning, I thought it might be worth a shot in the dark to ask for help:
Do any of you have experience trying to get your aspie kid qualified for Medicaid and other state (not school) services in New York? We just moved here, and my son (who is younger, and has a clear speech delay) qualified easily through OPWDD, but my daughter didn’t. The criteria depends largely on scores on speech assessments. My daughter’s expressive/receptive scores are average or even above average; it’s her pragmatic language where she truly struggles, and that doesn’t count for anything. We need to take her in for testing to assess her adaptive/social behaviors, which is really her largest challenge, but I’m worried that her recent increase in functional “life skills” will overshadow her social and pragmatic speech issues. Has anyone here been in a similar situation and have any advice?
Hi – I’ve been fallowing you for a little while. My youngest son is not quite 16 months. My middle NT daughter is three years old (almost exactly two years between them). My youngest has been behind since four months old. He has not been diagnosed with any specific clinical diagnosis however I know he isn’t NT. We’ll figure that out, but why I’m writing to you is because your daughters are about two years apart if I remember correctly,11 and 13. When you work with Brooke or deal with Brooke to try to help her, does Katie try to step in to help or get jealous or do the activity for Brooke? I don’t want to squash her helpfulness and love for her brother but I don’t know what to do aside from separating them when we work with him and the rest of the time anything goes. I guess as I write this I don’t know what I really want anymore. We have been working with him since I noticed his developmental delays at four months and we have gotten his fine and gross motor skills so much further. The reason he is behind now is because he doesn’t talk. He doesn’t make noise when he plays, he doesn’t do anything noise related except for scream when something is going on he doesn’t like or when he wants something or when he is playing with his sister. He currently has a speech therapist come every week and we are learning sign language to work with and teach him to communicate. We ask him to do whatever and his sister steps in and does it for him nearly all the time. How do I get him to do it and not push her away or get mad at him for the extra time he requires? Thank you for anything, I really appreciate it.
I have a 16 year old son with autism who has issues with hygenine. He hates to wash his hair or brush his teeth because of the sensory issues. Anyone have any suggestions on how to make it easier?
Keep his hair really short so it doesn’t require washing as often? If it’s short enough, most of the time he could probably just get away with dry shampoo. (Pssst is an example if you haven’t heard of those before.) With tooth brushing I’m not sure.
The other thing I would say is, you may wish to ask this question on WrongPlanet.net. Diary is awesome and I absolutely love it here, but it is mostly parent-dominated. For your question, however, it seems like you could use advice from autistic people who have the same problems as your son and see what they do to help. You can post questions there – I do so all the time – and autistic people are often kind enough to give advice. Wrongplanet is an autistic dominated space, even in the parent’s section, which is why I suggest it.
Here’s a link:
http://www.wrongplanet.net/forum19.html
Okay, so I just wanted to thank you. My sister Caley is Autistic, and I started talking to her about your question. Turns out sensory issues are the reason she loathes brushing her teeth! She said to get a toothbrush with really soft bristles, and allow him to choose his own toothpaste. She said toothpastes that are tingly are often even more problematic, btw. She said letting your son choose his own shampoo may also help.
Your son is 16, so not sure if he’d appreciate this advice, but Caley said that we had a toothbrush she LOVED when she was little because when she pressed it against her teeth, it would make music (via bone conduction). She said it was a good reward to encourage her to do so and overcome the sensory discomfort.
Hope this helps! And really, check out Wrongplanet.net! Even if you don’t go on there to post, go on there and read. I gained SUCH a better understanding of autism from the website, and now I think I’m more in tune with (and therefore a better ally for) the autistic community and my sister as an individual as a result. It’s really helpful. 🙂
I’m not autistic, but my son is. He’s only 7 and not a fan but he lets me help brush. We use Toms of Maine Strawberry toothbrush for kids. Our whole family uses it. I like it because it’s NOT minty it tingly at all. That’s the last thing I want when I’m getting ready for bed -a minty cool awake mouth! 🙂 it’s also available at places like Target and isn’t pricey.
Hi everyone, I wonder whether anyone could give me any advice regarding my little boy Mack who has a vocal stim. I of all people know how noisy he can be with his singing and sounds and how it could be ‘disruptive’ to others, my issue is however that his school seems to be taking a firm approach with him. He left school today looking very upset and his teacher said they had to give him some time outs!!!!! I KNOW! Imagine punishing a child for doing something that is intrinsically them! We think Mack may have PDA so all demands on him make him very anxious which will increase his stims, vivacious cycle I think. Anyway, I would love to hear from anyone who has been through anything similar. Thanks in advance x
Leslie, I’d suggest sitting down w his teachers to explain why you believe it is so harmful to punish him for a stim (agreed) rather than to give him a more manageable outlet for it. they simply may not understand that it’s not willful behavior and why it is intrinsic to who he is. i have found that honest conversation w the kiddo’s best interest at center stage is always the best place to start. h9ope that helps.
I think this may also help if you send it to them – it’s an autistic woman explaining stimming and she makes it clear that stimming is useful and it isn’t something to be stopped.
General Stimming Explained:
Vocal Stimming Explained:
And feel free to give them my email. autismspectrumexplained@yahoo.com Feel free to tell them I’m an expert on autism. I’m not, but I think a lot of people would label me that way, and for some reason people listen more to authorities than to reason.
My anxiety is on overdrive today. My 13 yo aspie is scheduled for an MRI with sedation at the end of the month. He suffers from some pretty severe migraines and is now having dizzy spells and “sharp, stabbing” pains/headaches multiple times a day. They want to rule out seizures and also a brain tumor. I am preparing my son for the MRI as he hates any and all doctors/tests/visits to the Children’s Hospital here. I realize that there is a slim possibility that there will be anything serious going on, but I cannot convince my anxiety to let up any. Scared…worried…terrified…HELP!!!!
oh, honey, i know this fear. i know it exactly. it’s dark and huge and consuming. and i know too the reality of the fact that it will not help the time go by nor change the outcome, it will simply make it harder for both of you as he feeds off of your anxiety, expressed or not, because that’s what our babies (from 3 to 30) do. and i know that there’s nothing you can do but ride it out and breathe and breathe some more and know – really KNOW – that it will be better because you will have answers and that kids get migraines and they turn out to be things like (as it was for Katie so many years ago, sinus fluid) and some, a small few, even do have epilepsy, as does my brooke and they are still really, truly, okay. I get it. i have nothing to offer but that along with a hug and the belief that it really, truly is going to be okay.
Hi everyone,
I am new to the autism community and am very overwhelmed anytime I try to do research and self educate. My son is 3.5 years old and was just diagnosed with mild ASD with a severe speech impairment 2 months ago. I was hoping to get some advice.
I’m wondering if anyone has knowledge about the muscles in the mouth/tongue affecting speech. My son has been in speech for 3 months having only 10-15 words and now has over 50 and tries so hard to repeat anything he’s asked to. His therapist had mentioned his mouth/tongue not doing what the brain is telling it to do. He can get parts of words like “da” in daddy but not the “deee” his mouth just stays closed while making a sound. I’m told speech will help this but that’s not good enough for me. I want to know exactly why his mouth isn’t moving correctly. So if anyone has had experience with this or could point me in the right direction for some books/articles to read I would really appreciate it.
Hi Jenelle,
It sounds like it could possibly be isomotor dyspraxia. Check out this article. It gives exercises to work on the different parts such as lips, tongue, larynx, etc.
Click to access Developmental_Verbal_Dyspraxia.pdf
I know my son’s therapists has done some of these exercises, particularly the breath control with having to blow on whistles that increasing need more breath to have them make noise.
Hope that helps!
Hi all! First, I just love this blog. Love, love, love. Jess, I read every word you write because you are so bright, funny, honest, smart, intelligent and all those other words that mean wicked smaht. OK, so my son is 3 1/2. He is not autistic but has significant developmental delays – severe apraxia (non-verbal with little means of communication – very poor fine motor so no signing/ipad…working on pecs), hypotonia, ataxia, global developmental delay, and is aphakic (he developed cataracts as an infant, lenses were removed, he now wears prosthetic contact lenses)…He started preschool in November when he turned 3 and had an amazing aide. The school has decided that his aide will not work with him again next year because, according to the superintendent, placing a child with the same aide year to year provides no benefit to the child. My mom instinct is shouting “BS!!!”. So I have a call into my son’s neuropsych but I thought I would reach out here. Can anyone point me to some solid research on why consistency is so important in educating special needs kids? (Or if you don’t think having the same aide is all that important, I would love to hear your take on that too!) Thanks so much!
This may help… 🙂
Keys to Success with Autistic Children: Structure, Predictability, and Consistency Are Essential for Students on the Autism Spectrum
http://eric.ed.gov/?id=EJ836962
Also, if you need to find studies in the future, I’ve found scholar.google.com to be a great resource. (Not so much this time around, but in general it’s helpful for finding studies. 🙂 )
Thanks so much, Creigh!
You’re welcome! Also, kudos for listening to your mom instincts. 🙂
If you think the school would listen, by the way, you could also actually ask autistic people themselves and show the school what they have to say. I didn’t mention it before, because although autistic people are the real experts, institutions don’t tend to be very understanding of this, but it’s worth a shot. You can ask on WrongPlanet what others think, if it has any benefits or not. That would probably fit under the school or the parents discussion sections. Even if you decide not to ask about this there, btw, it’s still an awesome website and I highly recommend it. 🙂 http://www.wrongplanet.net/forums.html
-Creigh
Hi,
I have a five year old boy on the spectrum. I have a nephew who is just about to turn one year old who is showing a lot of indications of being on the spectrum. His parents and grandparents appear to be oblivious as I have tried to open up communication by broadly asking how the boy is doing and if they have any concerns etc.
I don’t want to be the one to push them to a paediatrician. I know whatever I say will not be well received… But I know (from experience) that the earlier you start learning about autism, the better for the child.
Any advice or opinions on what I should do, would be very much appreciated..
I’m not sure what the sign you’re referring to are. It may be best, and this is just my opinion, to simply mention that if there’s a speech delay they should check with a pediatrician, without mentioning autism considering people have such a stigmatized view of it. There are a lot of possible causes of delays – hearing impairments (which aren’t as obvious as you’d think), specific language impairments, etc, autism is just one of them.
Likewise, if there is no delay but there are sensory issues, you may wish to mention going to the pediatrician to check for sensory processing disorder.
Just brainstorming ways they’d be more likely to receive well and come out with the outcome you’re looking for, though. (Checking with the doctor.) It’s pretty sad that we have to get creative like this, but fighting stigma is the long-term battle, getting him in to see the doctor is the immediate goal.
Hope this helps!
Creigh
I just accepted a job as an ESP (aide) in the ASD program at an elementary school where I live. I’ll be working with one or two specific kids (I don’t yet know who the kid or kids will be). Maybe it’s premature to be worrying about this, but I’m nervous that the program will insist on things like children making eye contact or not stimming. I don’t believe those things should be enforced, but I also don’t want to be accused of not doing my job satisfactorily. What can I do if this is in fact the situation? Essentially, what can I, as someone with very little authority, do if I feel like other adults I work with or near are not presuming the kids’ competence?
Are there any books out there for elementary school aged kids with siblings on the spectrum to help them deal with everything? My older, NT, son has been having a hard time this summer dealing with his little brother’s diagnosis – he’s jealous of what he sees as special treatment of his brother (although it’s really just because he’s younger, not because he’s autistic, but he doesn’t see it that way), and he worries a lot about him. He loves to read, and doesn’t like to talk about this kind of stuff, so I thought I’d try to find a book for him – I thought maybe someone here might know of a good one.
I bought a book I thought was great on the subject – it’s called “Siblings: You’re Stuck with Each Other, So Stick Together.” If you want to directly address it that may be helfpul. 🙂 http://smile.amazon.com/Siblings-Youre-Stuck-Other-Together-ebook/dp/B00509ASSA/ref=sr_1_1?s=books&ie=UTF8&qid=1408070844&sr=1-1&keywords=siblings
In addition, if you’re looking for fiction, the book Rules is about a girl with an autistic younger brother. I, myself a sibling, read it a long time ago and found it helpful. That said, I didn’t know much about autism back then, so I can’t testify to accuracy.
There’s also The Curious Incident of the Dog in The Night, but I don’t know if that’s age appropriate (don’t remember details of the books, it’s been ages since I read it).
Hope this helps!
Creigh
Hi Everyone – kind of a strange question, but appreciate your help. Would love input from the community on NEUROTYPICAL repetitive behaviors. I’m participating in a discussion on LinkedIn where the issue of repetitive behaviors lessening/disappering for autistic children as they get older (duh), and want to bring attention to what NT’s do. I’m NT, and I’ve come up with a few, but I’m sure there are more that I’m missing because I don’t do them and/or I can’t see them as that since I’m NT. THANKS!
This is an interesting article somewhat related to what you are asking, making the point, amongst others, that it is not necessarily the behaviour that is atypical but the degree and persistence of it. http://guardianlv.com/2014/01/autism-or-introversion/
Some of your examples like rigid coffee routines might be more of an OCD behaviour rather than stimming, but I’m not sure how the line is drawn between these.
I wrote a blog post about stimming, I think it may help. (http://www.autismspectrumexplained.com/our-blog/stimming-has-a-function) The ones that I cited that NTs do were tapping your feet, doodling, and playing with a pen.
In the world at large, what is called stimming in the spectrum are called nervous habits or fidgeting. They are a normal response to stress or excess emotions. EVERYONE fidgets! It’s not a spectrum thing, it’s a human thing. Because of our neurology, people on the spectrum are more easily overwhelmed that the typical person and so we fidget more often and more visibly.
John Mark McDonald
Scintor@aol.com
Hi John – I was thinking of that. I was also thinking of smoking, perhaps; people who “have” to have coffee (certain type, certain amount, certain times of day”, using a particular stall in the bathroom, etc. Any other thoughts are appreciated 🙂 I’m just looking to drive home that the perceived “differences” really aren’t that different.
This post came across my feed – re internet safety. I wanted to share with everyone. Great stuff in it.
I am not OK.
I can’t say this publicly because I will be stoned.
With recent events, even my own family can’t understand. No one gets it.
My son is violent. Extremely violent. He gave me another concussion this week. He went after my 7 year old in a way he never has before. He raged and screamed.
I am scared.
I love him. I would never hurt him.
But, for a moment, I understood what Kelli did. To top all of that off, she was my friend, a person I looked up to…somewhat of a hero. But, my hero did a horrible, terrible thing. It gutted me then and again this week when this plea bargain happened. And, I can’t support her. Within the circle of parents I know, that leaves me feeling very much alone.
Because I am a Unitarian Universalist, I believe strongly in the inherent worth and dignity of ALL people. And, Ben is a person. Isabella is a person.
I want to respect my son’s differences just as I do my daughter’s Deafness. I want to help him learn to control his rage…I just don’t know how.
I know that so many of Ben’s issues aren’t autism. Mood disorder is not autism. ADHD is not autism. ODD is not autism. But, at the same time, I am being beaten by my child.
Like I said, I am not OK…
Oh, honey. It’s okay to say your hurting and it’s always, always okay to ask for help. Is there anyone on your son’s team that you trust to bounce ideas off of? Sometimes a dialogue with someone else who knows our kids well can help – a somewhat more objective observer who can help you brainstorm what’s going on and how to help your son to find calm .. a doctor or anyone at school whom you can approach?
Also, it sounds like there are lots of factors at play, but perhaps this is worth a look. Even if one thing resonates, it might help to view his environment from a different perspective.
http://wearelikeyourchild.blogspot.com/2014/05/a-checklist-for-identifying-sources-of.html?m=1
Thank you. This is a wonderful list. I sent it to my wife. We are looking at these things. He may be in pain…he needs surgery and is extremely anxious about it and the condition is causing him pain. I have an appointment with his psychiatrist Monday and also with a therapist. We have been offered an in home case manager. I think we are going to take it. I just hope this is the right decision.
I just don’t want to take his dignity from him. We were going to send him back to respite and he reacted very violently. Attacked me, his therapist, a security guard, ran away. We didn’t send him back…but it taught me that he needs to be given more of a voice than he can say.
I struggle because I read things like “The autism parent community is fucked up and horrible to autistic people. ” written by autistic adults and I just don’t know if pushing my son into therapy and putting him on medications and (selfishly) trying to stop the pain, the aggression, the unhealthy behavior…if trying to make my family healthy puts me in that category.
My heart aches for my son.
I don’t know if you read the follow up post to that one, but I very strongly recommend that you do. It puts it in what I think is very important context. (It’s on that blog rather than the Facebook page.)
Trying to help your son and have your family safe is not what the original article addressed. I promise you.
And good for you for listening to what he was clearly telling you about respite. It doesn’t mean the idea of it is bad, but clearly that wasn’t the right situation for him.
This stuff is hard. Really effing hard. Keep talking to the team. Keep brainstorming with your wife and the doctors and, when possible, with your son. He might know better than anyone else what he needs.
We’ll be here.
This is not OK. You are not OK, and your son is not OK. Violent outbursts, especially if they are not under his control hurt both you and him. Violent meltdowns are a reality on the spectrum, and we tend not to talk about them because they are VERY uncomfortable, but reality is not always like a motivational poster.
Leaving aside the damage he is doing to others (which is by no means trivial) the risk to your son is incredibly high. Seriously injuring a close family member is a trauma that does not go away. Even just knowing that you can lash out and injure a loved one, even if you have no intention to, is already traumatic enough to scar you for a lifetime.
If this is a case of violent meltdowns, you need to get professional level help without any delay! This will not go away and it will not just get better. You may have to consider the unthinkable. If the violent cannot be controlled you may have to consider an institutional setting. I have known some who have made this soul-ripping choice, and it is never easy, but it is better than the damage that is being done to you, your son, and the rest of your family. If it is necessary, it can be temporary; it can be permanent, depending on the needs of your son. But, if you are a parent that puts the needs of you child before your own needs, it may be a necessary step. It is FAR better than someone dying, which is a real possibility in this situation.
There will be those who judge you and curse you, but you will still have your son, and your son will have his family in the future.
Now, I am not there, which means that I am making assumptions that may be wrong, but I cannot sit back an do nothing when lives may be at stake. I am a 44 year old man who is on the spectrum, and I have been there on more than one occasion. I watched myself helplessly as I hurt someone I loved in a meltdown, and I will always bear the scar of guilt on my heart until my dying day. I am lucky enough that I did not do serious harm, but I could have. Had I done so, the guilt and self blame could have easily been fatal.
I am willing to stand here and admit this publicly and take any hatred and anger that come my way if there is any chance that it will help another.
John Mark McDonald
Scintor@aol.com
We have a team. We aren’t doing nothing. I have an appointment to meet with his med doc and one of his therapists Monday. We are also going to be getting a case manager involved. Things get better and worse… and right now, things are rough.
Dear Not OK,
You have done the right thing by being real with yourself and safe enough others, not trying to “be a hero” which heartbreakingly does not end well. Honesty wins and I am praying for you.
I am an autistic adult who in a way understands. It is possible to reorganize violent impulses – though difficult – but much more more difficult alone, or living in a sea of lies. You are making all the right choices to speak up and seek community now.
If you want to contact me privately, I care to listen.
Love and solidarity, Ib
Thank you. I will contact you and soon. I need to find more adults that are like both of my sons to listen to. I am learning that all three of my children (my daughter is Deaf) belong to communities that are not well accepted by society. I need to find the ways to both keep them (and us) safe and respect them and their communication. This is a hard road. But, today, because of all of you, I am a little further down it and a lot less scared to walk it.
Hello All,
I am organizing a Fire Safety/Open House event geared towards kids (or adults!) with special needs in October. I was hoping that this community would have some suggestions on what accommodations we could make so that this event is accessible to as many people as possible. We are planning a scheduled “quiet block” so that kids who are anxious about the loud noises typically associated with this kind of event can see the fire truck and meet the fire fighters without (or at least with reduced) anxiety about the sirens and horns. The event is being hosted at a therapeutic riding facility, so most of the volunteers will also be experienced at working with individuals with a variety of needs. My question is: What accommodations could we make that would help make this event a positive one for you/your loved one? If you had a negative experience at a similar event – what made it negative? If you had a wonderful experience – what made it great? Any advice or suggestions you have would be greatly appreciated.
Thanks in advance for your help!
You know, I’m afraid I don’t have much experience in that specific area. But I do know a better place to ask, a place which is populated mostly by autistic adults – wrongplanet.net. I would probably ask under Parent Discussion, because that has both autism parents and autistic adults who choose to answer non-autistic people’s questions – http://www.wrongplanet.net/forum19.html. To be honest, I recommend that forum for a LOT of things, I credit it with a lot of my autism understanding.
Dear Jess,
I am writing today asking for your insight. My sons’ school district has adopted a new slogan this year: “It is never OK to be hurtful. It is never OK to be disruptive.” My autistic 11 year old has been trying to hash out the second part of this slogan in his mind for the past 3 weeks since school has started. He has been coming home everyday in a panic and a few days ago was finally able to articulate part of what he is feeling, “…I feel like I can’t be myself, as I’m always disruptive, and that’s not ok.” Even his 9 year old brother has been chiming in, saying that he knows that his bro just makes sounds sometimes and is wondering what this new ‘rule’ is feeling like for him.
I am trying to figure out how to approach the Superintendent with a request to reconsider the second phrase of the slogan. My son’s neurology, when it gets overloaded, causes him to blurt out sometimes; he doesn’t even know he’s doing it at times. He is scrutinized every minute of the day, being reminded how he’s not acting like the other kids (ABA at its best, eh?). My husband and I are in the process of revamping his IEP to be more open towards his academic needs, rather than the current focus on him behaving and blending in with his peers.
I feel strongly that I would like to begin a conversation with the district about the ‘disruptive’ part of this slogan and would appreciate your comment on this scenario.
Thanks so much,
Stella
I’d approach it just like you did here. If you’re kiddo is able, have him write or talk or otherwise communicate (a picture of how he’s feeling, perhaps?) about why it’s hurtful to him. Have his brother write why he doesn’t think it’s an inclusive, welcoming policy. It’s always best to hear it from the ids themselves when possible. Just be honest. It doesn’t always work, but it’s always worth trying.
That’s a great idea! I appreciate it. I feel really alone in this; I may seek out other parents to join me in this request/conversation. I know I can’t battle ABA, Intruder Lockdown Drills, and general inclusion standards on my own, so I need to get out there and get people talking. Thanks for your time! I appreciate you so much.
Stella
always better with critical mass. but don’t discount the power of the kids’ voices, particularly when amplified by mom and dad 🙂
It is just nice to get feedback that this is a worthy cause. I don’t hear anyone in my community raising red flags about disruptive being equal to hurtful. There are many shades of disruptivity (is that a word?) and it is hard enough for NT children to toe the line between the shades of it, let alone a kid who processes environment differently and uniquely.
I was half expecting you to say something like, “Ugh – let this go, darlin’. Bigger fish to fry than this….” but I’m glad that you didn’t, cause this feels important.
Thanks again, from one messy bathroom house to another,
S
Stella, this is definitely a worthy cause. Though I would continue to protest it on the large scale (yes, you are COMPLETELY in the right to protest), on the smaller scale (just a thought from experience with anxiety) it might be a nice short term thing to help your son if you could get an authority figure – school principal, teacher, whomever – to write him a letter or talk to him saying that his behavior is not what they were referring to, and apologizing for being too ambiguous. Probably a lot easier and faster to find someone further down the food chain to write a letter or talk to him than to get the superintendent to change a slogan, although long term I completely agree there.
Wow, Creigh. Thank you so much for your advice! I understand what an uphill battle this has the potential to be and your suggestion makes a lot of sense!
Thanks for your time,
Stella
Does anyone have experience in finding alternate methods of communication for an autistic tween who (as far as I know) currently only uses echolailic speech?
It is an extended family member, who is in a residential care situation. I don’t know much about the situation other than his health and general well being has improved since going there (household was too chaotic, I think). I don’t know what methods have been tried, and I don’t think the parents/grandparents understand that echolalia can be communication – I was just told in conversation that “he just repeats what we say”. I just want to give them some resources so they can keep trying to find ways to communicate with him. Right now, autism is the bad guy to them, and I don’t know if there is hope or not to get them out of that position.
They aren’t really plugged into the autistic community, and I don’t know if the mom would even listen to my input because “my son’s not autistic like her’s”, etc. I do have a good relationship with the grandmom, so if I can get HER to listen, maybe she can use the info when she visits. I live very far away so I can only send emails, etc., with the info, but I appreciate any input you have.
So I hate to be a one-trick pony, but this is a really good trick so I’ll repeat it. I really, really would check on wrongplanet.net. Its members are autistic themselves and they’re really, REALLY good about trying to help other autistic people in bad situations, which it sounds like he’s in. Also, you aren’t seen as a good source, they may be more willing to listen to other sources. The folks on WrongPlanet come in all shapes and sizes, non-speaking to Asperger’s, intellectual disability to Mensa level IQs, independently living to residential facility living…I could go on, but you get the idea, they’re a diverse (and awesome!) bunch of people. That would make it really hard on the mom to say they’re not autistic like her son. I would probably ask under Parent Discussion, because that has both autism parents and autistic adults who choose to answer non-autistic people’s questions – here’s the link: http://www.wrongplanet.net/forum19.html.
Hope this helps!
Sorry I’m back again!
Any suggestions from the community to help my son’s team find ways to keep at least some supports in place through 2nd into 3rd grade? His ARD meeting is on Friday. He’s gifted and autistic, and it seems like he’s already “testing out” of speech support in 2nd grade. He scored very high on the paper test (expressive/pragmatic language, etc), but he also reads at a 4th grade level so I’m wondering if he’s just looking good on paper, but this isn’t reflecting his reality socially/pragmatic language wise? His team, I think, is supportive, but he has a new speech teacher this year so I don’t know how much flexibility they have.
I’m worried about losing supports for him, because NEXT year, in Texas, they start the school standardized tests and I have no idea how that will go. I don’t want to have to try to regain supports he has in place now if he looses them because he’s smart and can “pass” on paper. Thanks!
Hi everyone,
My son has transitioned to Gen Ed this year, last wens to be exact.
He had to leave his school of 2 yrs to go to our “home school”
We agreed to this move because we thought it might be a better fit. We have an IEP meeting in early October to assess his needs.
It has barely been a week, but his Dad & i are already concerned. He is walking circles on the playground and has reported to me that he doesn’t remember how to make friends. He is social, had friends at his old school and has expressed that he does want friends again.
It may take time. But just in case, I’m coming to all of you for advice, Ideas for incorperating socialization into his behavior goals, things that have worked for you or your child…perspective:)
I called the RSP teacher just to give her a heads up. She said she would talk with his teacher & that it takes time.
Thanks guys!
He started the 2nd grade. Forgot to mention that:)
Hi everyone,
I have a 16 year old son with Down syndrome, an almost 8 year old daughter with autism and a 6 year old daughter. I have a question for you about arming my youngest daughter with a little script when her friends ask about her siblings. In the event that she needs to explain or defend any behaviors or differences, I would like her to be ready.
I’m sure the point can be made in few words, on a kindergarten level and in a positive way, but I’m at a loss. Any thoughts?
Thanks so much!
Hi Jess I really need some opinions on something that is happening to my son at school. We are in Australia he is in year 1 in a mainstream school. He has sailed smoothly for a year and a half and now lately he has been having meltdowns and throwing things around. It has happened several times and every time I am called to come and pick him up and then they asked for him to have the week off so they could come up with a safety plan. He is now on a re entry to school plan where he is allowed there for 2 hours and then I have to pick him up. This lasts for three days and then he can go for 5 hrs for the next three days and if all goes well he can start back full time. If at any stage he has meltdown. He gets sent home and we start again. The other day it happened again only this time he calmed down and cleaned up his mess. He was told he still had to go home and this obviously upset him again. I’m feeling a bit upset about this as I feel like it is not going to solve the problem and I feel like they are isolating him and being out of routine is going to make it worse. Just wondering others opinions and if anyone has had a similar experience. We have outside support who are trying to implement things in the classroom but the school is not being very responsive to them. They do have a few things in place but I don’t think there is much consistency which we have continued to bring up with them. I am considering changing schools but worried about his reaction to this change and he has made lots of friends at his school that he won’t want to leave. Just don’t know what to do but I want it to be right by him. I just don’t feel like what they are doing is right by him more concerned about everyone else.
dear god .. this is atrocious. it sounds like they’re punishing him for their own incompetence and exacerbating his anxiety at every turn. this plan is a set up for failure – for ANY kid. i’d hate to suggest taking him away from the kids he knows, but this is such a fundamental and egregious lack of understanding of his needs, I’d be looking at other options. This isn’t okay. It’s just not.
Thanks Jess. I really needed to hear that. I’m just so angry and I really want to fight this. We have told them this plan will not work and they say it’s what all the schools use with children on the spectrum and with ADHD. I did some research and it’s not. I will look at another school it just breaks my heart for him that I have to but I will fight this too because I have had enough of this and I don’t want it to happen to others. Thanks
Is there anyone in the Colorado Springs area that I connect with? Parents not ARC or TRE? Some kind of a support group? My son has autism was labled for 29 years as Mentally Retarded aggressive type. Went in to crisis at 16 and into institution at 18. Fought for the last 12 years to get him out. He is nonverbal but he is not DD. No one would believe me until recently. He is on a try it basis here in the community in a group home. I did finally get a doctor to hear me and change his label to what i felt it was for a very long time. I have been bullied by this community for years and do not trust any of them. I would just like to talk to someone who has a child who is now grown and what there experience is. Thank you. sabrina
From a friend in Colorado ..
I don’t know of any groups but I do know a clinical social worker/therapist who I’m positive would be an AMAZING resource for finding what this woman is looking for. Dr Tara Alexander. Largest, most kind heart on earth!
Thank you I will look them up Sabrina
dear jess
I looked her up but there is nothing that suggest she works with people with autism or there families or would know this community. thank you though
Sabrina, she wasn’t meant to be the destination, but someone who would be able to tell you who to connect with.
A quick google search just yielded autismaspergerconnections.org which says it’s a 501c3 non profit organization linking families, individuals. and professionals in the Colorado Springs community to autism support, information and resources. They run bi-monthly support group meetings.
There’s also autismcolorado.info which offers community connections
thank you Jess
So, not really new here, but I’m mostly just a “lurker.” I am a SAHM to a 14 year old NT daughter. I have been caring for brothers, aged 4 (we will call him Carson) and 2 (we will call him Jasper) for a little over a year now. Carson is on the spectrum, but hasn’t been given an official diagnosis due to lack of resources in our area (that’s another comment for another day). He is in a Pre-k class with other autistics and one child with Down Syndrome. His mama is a single mom though and her job is as a waitress so she works in the evenings, which is where I come in. I am beyond gung ho to help this boy progress and grow to his fullest potential so I’m on research overload lately.
My question for this day has to do with his speech and understanding. When I first started watching him he had NO speech. Now, he does have SOME speech but it is mostly in the form of echolalia, but NOT scripting. He is a parrot and repeats everything he hears. Many times his repeats hit the mark with context, but most times….well, not.
My question actually has two parts. The first is GUT WRENCHING for me because I feel partially to blame. You see this summer we took an extended vacation and the boys were in the care of someone found at care.com. Well, as it turns out, background checks don’t reveal all. Evidently her house was filled with cursing. I’m talking the gamut, the F word, the B word, even the C word. Well guess what? Carson remembers and repeats ALL OF THEM! He doesn’t KNOW what he’s saying, ALTHOUGH they are sometimes used when he has a meltdown (which leads me to believe the words were used in anger at that caregivers home). His therapist has advised us to use “positive reinforcement” to help quell the use of the words. I don’t understand though how to positively reinforce NOT to do something. I’ve had them back for 2 months now and the use of the language hasn’t lessened AT ALL. So…. HELP!!
Finally are the use of yes and no. I am certain that he doesn’t know which means what. For instance, he doesn’t eat most of the things Jasper eats, so when Jasper says “I want grapes” he parrots him. When I say “do you want grapes?” He says “yes” but shakes his head no and begins to cry. So I KNOW he is confused. What I don’t know is how to help him, to make choices easier.
So there you have it. Questions one and two of 6, 274, 432!!
Before I start, I’m not an autism professional and advice I give you, therefore, will not be professional advice. I am, however, a former nanny to autistic children and that personal experience is where this advice is coming from.
You could positively reinforce his not using the words by rewarding him whenever he’s in a situation where those words might come up and he doesn’t use them. I would also just not react when he does use them – a reaction can be a reward.
With the questions, you could simplify them by actually physically holding up the objects in question. Before the child’s language improved, for instance, I would physically pull out the options at hand. For instance, if I was asking “Do you want milk or orange juice?” I’d physically pull out the jugs of milk and orange juice from the fridge. Just to provide a visual and let him point if necessary. I would also model the right word or phrase he should be using. “Yes” or “milk” in this instance.
Hope this helps! Also, for anyone else reading, Care.com isn’t all bad…that’s how I got my nannying job! You just have to be careful with it.
Does anyone know any resources for parents of kids with autism and also gender identity issues?
I do not, but I do know where you could find them. The Thinking Person’s Guide to Autism editors are really great at posting information about gender and autism. The Autism Women’s Network is another possible place to check in. And, of course, you can always post and ask this question on WrongPlanet, the discussion forum for people on the spectrum. (They have a parent’s section.)
Here are the links for the resources I mentioned:
Contact Information for Thinking Person’s Guide to Autism:
http://www.thinkingautismguide.com/p/about.html
Autism Women’s Network:
http://autismwomensnetwork.org/contact-awn/
And here’s the WrongPlanet link:
http://www.wrongplanet.net/
I would add, I highly recommend all three of these resources in general. TPGA and AWN both have Facebook pages you can like and follow. TPGA also has a really good book you can read, and a website full of blog posts. And WP is a place where I go to ask questions ALL the time!
Best of luck!
Creigh
I have been a follower and supporter of your Facebook Page. I am now reaching out to you for some advice or at least some direction. My newly acquired daughter in law, has just become a single parent with an autistic child, age 5, and 2 younger children. She is frustrated and doesn’t know how to parent(her words not mine). When I asked her if she had any education or support, she told me she didn’t know that she needed any education. Well, long story short…. I want to help her and my grandchild. Can you point me in the right direction?
Sincerely,
Robyn
Caring Nana
Robyn,
There aren’t a lot of good answers here, not from my limited understanding of the situation. What I will say is there are a BUNCH of really awesome websites and Facebook pages that you can refer her to. I recommend the Facebook pages because they’re a low key introduction to learning about autism. Some of the pages I’d most recommend include:
The Autism Women’s Network: (Information applies to boys, too)
https://www.facebook.com/AutismWomensNetwork?fref=ts
Invisible Strings:
https://www.facebook.com/pages/Invisible-Strings/639580906071399?fref=pb&hc_location=profile_browser
Autism Spectrum Explained (the page my sister and I run):
https://www.facebook.com/autismspectrumexplained
And, of course, Diary of a Mom!!!!!
For websites, if you think she’s up for it, I would most recommend Autistikids:
http://www.autistikids.com/
In addition, I’ve been told my website ASE for Kids is actually really good for adults, too – easier to understand and less intimidating than the full version. It’s also good because if she reviews it she’ll be able to see kid-friendly ways of explaining the characteristics of autism to her children. You can find that website at:
http://aseforkids.weebly.com/
Best of luck!
Creigh
I have been a fan of your blog for some time. I have never left a comment because I am not good with words, but I would like to ask you a very important question. I am autistic. I also teach preschool students who have autism. A former student’s new teacher is really having a hard time seeing him. How do I get her to see him? can you email me?
amf, while you say you’re not good with words, this comment serves as evidence to the contrary (though I acknowledge that it may have taken a great deal of effort and time to write, and I very much appreciate it.) Perhaps writing a letter to the teacher, which you could either do alone or with the parents, could help. Detailing some of the kiddos challenges and pairing each of them with a strength – ie – he has trouble sitting and attending for long periods, but it’s because his energy is boundless. He isn’t able to demonstrate his capability in some areas, but when you see him doing the things he loves, his passion is contagious! Perhaps make a list of accomodations that you made for him and the effect that each one had. ie – he responds very well to visual remninders, eliminating the need for constant verbal prompts which can take the teacher’s attention from the class. Another idea might be to see if they might let you consult to the classroom – come in for a day and point out some areas that might be improved. Just brainstorming, not sure if any of this is helpful – hoping others will chime in as well.
Thank you. His mother and I will start working on this tomorrow. I contacted his teacher 3 weeks ago, when she emailed back yesterday she said my presence would be disruptive to their routine and boundaries.
I am having a rough week and could use some wisdom and guidance.’
My daughter is a few months away from turning 4. She was in Birth to Three Early Intervention here in Washington State and then upon graduation was evaluated by our local School District (almost a year ago). She passed all their standardized tests and therefore, even with an autism diagnosis she was denied preschool/services by the school district because she is cognitively ahead of her peers. While she was denied, they said they could see her “quirks” but felt like she would do great in a “typical” preschool. While she is very bright, she also has SPD, has trouble knowing how to ask to go potty on her own and has trouble staying focused unless it’s a preferred activity.
We enrolled her in preschool hoping that she would be okay but they have told us after two days that they will give it another week to see how she adjusts but that it probably isn’t going to work out. She will be devastated as she loves the other girls and wants to go their badly. I feel like I’ve failed her and am not sure what my next step should be. My husband is against home-schooling as he believes she won’t grow socially and we currently have no places that offer social groups in our area for her age.
So, my question is, do I have any recourse with the school district? Can I have her reassessed by the district to see if we can get her into a preschool in the district? How would I be able to find that out.
Any insight would be much appreciated. It just seems like there isn’t a place for her anywhere and I am broken-hearted today.
Hi I’m glad you wrote and I’m sorry it’s been so rough. Unfortunately it sounds very familiar. Lots of times schools will need to see the child “fail” before offering supports.
I’m assuming this is a public preschool. I would ask for a team meeting to discuss why “it won’t work out”. They can’t just throw their hands up and say “sorry” and kick her out. Ask to sit down with the same team that rejected her need for supports and have her new teacher there to discuss what she needs for success.
Get an advocate if you need it.
If she has a disability and it’s affecting her ability to be in the classroom, they need to support her.
I know it’s exhausting and hard, but don’t pull her out without a fight.
It might help to find some other WA special needs families who have been through what you have to help guide you.
Good luck. It shouldn’t be this hard ❤️
Thank you. I should clarify.
We were not given the option to go to a public preschool last year or this year so we enrolled her at a private preschool recommended by the district. They, unfortunately, can kick her out which is disappointing but they really don’t have any desire to “see” her or to meet her where she’s at.
Thanks again for your support! It helps.
Ah. That changes a lot. It stinks that after two days they are unwilling to figure out how to make it work 😦 Unfortunately all you can do is ask them to try to work with you and her to meet her needs. If they can’t, my advice about going back to the team that denied her the public preschool and explain what happened, with any info from the private school that you can get. Go with an advocate and ask for observations at home and in the private preschool setting (we did this when my son was having trouble at his private preschool and they were going to kick him out – the team needed to see him around peers and in a classroom setting). Even having her in a “typical” public school classroom will at least have her under their eye so they can see what she needs as you head towards kindergarten.
Good luck. This is a long road and I know it’s hard but we really are our kids’ best advocates at this age. I hope you are able to find the best place for her.
Hi there,
I’m not sure if this is the right forum for this so feel free to remove it but I thought I would at least try.
I’m the mother of a boy with aspergers but I’m writing about an incident that has happened here in Pittsburgh to another boy. Apparently, some athletes were doing some kind of hazing to their younger teammates. They took one of the boys, who happens to also have autism, and taped him to the goal on the field and left him. I’ve provided a link to the news story. http://pittsburgh.cbslocal.com/2014/10/07/coach-players-suspended-after-autistic-boy-allegedly-duct-taped-to-soccer-goal/
I’m writing this now because it seems that the community and students are rallying around the athletes that committed this act. The boy who was hazed is being called a snitch and one of the stories circulating has been that he was booed at the most recent soccer game and is continued to be bullied an harassed on social media. I’ve also seen this community rally around other kids who have been bullied and harassed.
There are some of us parents and family who want to support this boy and let the community know that this is not okay. No child should have to go through this to be part of a team. I wanted to share this because I know this is a large audience and that I’m sure there are more people who would want to support this young man. A good friend of mine is working on putting together a rally specifically targeted to student athletes who support this family.
COMPLETELY agreed! Bullying is such a toxic and prevalent issue in the autism community. So glad you are rallying against this. I wrote about my own efforts (small scale) here – not sure if it will help you, but if it gives you any ideas I’m happy to help!
http://www.autismspectrumexplained.com/our-blog/on-bullying-teaching-that-no-matter-the-type-or-the-target-its-never-okay
Creigh
Jess,
I just watched “Loving Lampposts” for the first time today. Did you ever write a post about this film? I’d love to know your thoughts….
Stella
Just wanted to say, I LOVED that documentary! Did you have any questions about it?
Thanks for the offer! I’ll watch it again and will ask you specific questions. I know that I have some, but I didn’t write them down.
Hello, community. I am the director of admissions and counseling at a small private school for neurodiverse kiddos. In developing individual student learner profiles and just in our everyday discourse, we talk about the fact that each of us (kids and adults) have our own areas of strength and challenge. Because we are not a single diagnosis school, we don’t really address specific diagnoses of our students. Some of them are aware of their “label”- ADHD, autism, Asperger’s, dyslexia, etc.- and some are not.
I’ve recently had 3-4 parents mention that their child has begun to notice they are different. For example, they don’t go to the same school with their siblings, or they’ve noticed they struggle in areas most of their other peers don’t. These parents have not told their children about their diagnoses, and would like help in doing so. In my mind, talking to someone about having autism would be very similar to talking with someone about having ADHD, dyslexia, etc. Everyone’s brain works differently and we all learn and utilize a myriad of strategies and ways of interacting with the people around us in order to learn, grow, and be our best selves.
My questions:
1. Am I off-base in my thinking? And if so, how can I get on the right track?
2. Are there any good books directed to autistic children about their autism?
I sincerely appreciate any assistance and suggestions.
You’re impressively on-base. 🙂 I actually noticed that was an issue myself and went hunting for resources and put together some advice from personal experience, too. The list of books is about halfway down the page:
http://www.autismspectrumexplained.com/explaining-autism-to-kids.html
Also, I was trying to help a mother explain autism to her kids on and off the spectrum, plus help the big brother of the autistic child I take care of understand autism, and I put together a website to explain autism to kids. The website is made for older (ie able to read pretty well) kids to be able to explore on their own, and younger kids can benefit from the website with guidance from a grown up, although I think it’s best for all kids to be guided, because it allows for answering questions and discussions. You can also break it down into small chunks with the child – watch one video and discuss it at a time. The website is also put together in a way to reinforce kid’s self esteems, ie “different, not less”, which I think blends nicely with what you’re trying to do.
Here’s the link! I hope it helps!
http://aseforkids.weebly.com/
Creigh
Hello Community – I am asking for a facebook friend – I met her at a special needs parent event, and I follow her on Facebook. Her elementary school son (adopted) on the spectrum, possibly with other issues, has been restrained at school at least 3 times this year and it’s only October. I did send her the aggression checklists, which she appreciated. It there anything else that could help him/her/the school that a mere acquaintance like myself could send?
It’s just freaking me out that this keeps happening. Why are they not helping him manage things so he doesn’t go into a massive meltdown? And I feel like I have no right to talk because I don’t have the same issues with my kid, but the restraint thing scares me.
Thank you for your help.
Hi, PK. So sorry to hear that your friend’s son is struggling with meltdowns. As the mom of a very ‘explosive’ son, I can empathize to the moon & back. The shift for our family (and now, 2 years later, the school is finally turning around and following our lead) has taken place thanks to a model presented by Dr. Ross Greene in his book “The Explosive Child.” Dr. Greene also has a website (www.livesinthebalance.org) with free resources for parents and educators. The main idea behind this model is “Kids do well if they can,” which is very different from the typical “Kids do well if they want to.” From there, the caregivers lenses get shifted, and adults become aware of the need to be proactive towards solving problems with the child in order that the explosion doesn’t even have a chance to ignite.
I have a lot of information and experience with this approach and would be happy to be in touch with answers to your or your friend’s questions. Let me know if you’d like to know more.
Sincerely,
Stella Hastings
Thanks! I forwarded your comments – do you want me to connect her with your blog so you can communicate directly?
My son will be 4 in December, and was just diagnosed with ASD Level 1 a little over a week ago. We will be going to have him evaluated with the local school system in November for the special preschool here, but between now and then, I am trying to make things easier for all of us. My big question involves moving. We are preparing to move into my father’s house soon, and I think the transition is going to be hard for my little guy. Part of the challenge is that we do not have a concrete time frame, as it depends on when my Dad finds a smaller place, but I am also concerned that a lot of the familiar aspects of the house will be gone (like my Dad’s dog that my son loves). Any and all advice on how to make this easier on my son would be awesome. I also apologize if moving has already been addressed here, I didn’t have time to read through all the comments right now, but I will definitely be continuing to go through them, lots of great info here. Thanks!
The library may have some good books for children on moving. It’s all about managing expectations. Even if things are surprising, if he can learn to expect that things will be different, that may help. Pictures, visiting, etc. may help him as well. My son was diagnosed at 4, and we moved when he was 5. He has what would be considered “mild” autism. For him, he can deal with changes in some situations (fun things, etc.), but not with school routines, etc. Help him understand what will be different, what will be the same, etc. Social stories (basically comic-book format of what to expect) can really help.
Thanks PK, checking out the library is a great idea.
Hi Marti,
Whenever I had transitions like this when my son was younger, it really, really helped to draw simple pictures and make a little “book” (cardboard paper stapled together) that would show “the story” of what would be happening.
we traveled a lot. So I would draw our house. then a plane on the next page. then a building on the next to page to symbolize “NY” (where would travel to often).
Also, I printed a calendar and stapled it as well, marking the days on the calendar (with like a star or a check mark or something) to show the days we would be there. OR – when the change would be happening.
Maybe you could draw a house with all his favorite toys in it or whatever he likes to keep with him. so that he can see that where you are going will be safe and happy.
These simple little pictures (I am NO kind of artist, lol, we are talking stick figures and happy faces ha) – did so much to calm him and help him to understand what he couldn’t really grasp with words.
Hope it helps and best of luck to you!!
Thank you so much Amanda! I will definitely try that.
I would love to reach out on the facebook page, but wanted some anonymity. I just want to know if there is anyone else who has had to deal with sexual abuse of their child. My 10 year old autistic daughter was sexually abused by a grandparent. The person has been reported and convicted. We tried some therapy but the model was geared toward NT kids. There doesn’t seem to be a lot of resources out there to help with this. I’d even be happy to hear from just one person who has been through it. I’m so afraid of how this will effect her long term. I’m so angry too. Angry at the person who did it to her. Angry at myself because I didn’t see it coming. (Even though I don’t know how I could have.) I’m angry that we could use support but this type of thing had a stigma attached. I’m supposed to hide it right? Keep it hush, hush. It’s lonely and scary here. I just want to have hope that she’ll be ok.
Oh I am so, so sorry. I don’t have advice, but will do what I can to find those who do. Hugs to you and your girl.
Thank you so much. Also, thank you for allowing me to reach out and remain anonymous. I may reach out to some people who posted that they might be able to offer me some advice.
I’m so sorry for your and for your daughter’s pain. Your reaction and the reaction of other family members has a huge impact on your daughter’s recovery regardless of the professional help that you seek for her. There is so much that you and your other relatives can do to help your daughter through this. Kudos to you for standing up and seeking justice for your daughter. She will survive this. Please read this article about intrafamilial abuse.
Click to access intrafamilialabuse.pdf
Thank you for this resource. 🙂
I’m so sorry this happened to your daughter. 😦 Sometimes this world sux. I don’t have any wonderful advice either, but just wanted you to know that your daughter is so blessed to have you as her mother – for the fact that you reported it, sought a conviction, held someone accountable for the unthinkable, and now want to figure out how to help your daughter manage the aftermath of such an awful, traumatic experience. I’m a praying person, and I will pray for you and your daughter.
I don’t have any advice that I can offer, but I found this conference that was held a few months ago. Perhaps the speakers/organizers have some resources they can share.
http://www.eventbrite.com/e/child-sexual-abuse-treatment-opening-pandoras-box-11th-annual-conference-protecting-and-treating-registration-10596439235
Let me know if you would like me to reach out to them to find out.
Thank you. I ran across that too, but didn’t think about contacting them. Good idea!
My 6 year old son was abused by a 10 year old neighbor last year. It was emotionally crushing to my husband and I. It took many months of crying and anger to even feel slightly normal again. Because of my son’s speech delays, we had him seen by a psychologist that deals with the Autism community. She also helped us deal with our own emotions. I can say without a doubt, it was the worst thing I’ve gone through in my life. But on a good note, it’s been over a year and my son shows no signs of trauma, physical or emotional, from the incident. We moved 6 months after it happened, and he’s a happy healthy kid.
I am sorry that happened to him and you. Thank you for sharing your experience. I’m so glad he is doing well!
I’m glad you reached out. It takes a lot of courage to jump into this. I don’t know about the abuse of a child with autism, but I was abused as a child. Being angry is normal and I’m glad the person has been convicted, but please don’t be angry with yourself, we as parents do all we can for our kids and abusers know how to be secretive. For a NT, long term effects can be difficult to live with even after years and years of counseling. How much does she know, is she verbal? Your last comments about a stigma and keeping it hush hush isn’t true anymore. More and more people have publicly come to terms with it. Being a victim doesn’t have to destroy your life. Yes it is lonely and scary,but there are others out there. I just know that you as a caring Mom will find what your daughter needs. I will ask my counselor, who deals with kids, what she thinks can be done.
I am now an adult woman with Asbergers and as a child, I was a victim of sexual assault by a family member. I never came forward as a child, I hid it from everyone. The fact that you know and are able to seek help is wonderful. As angry you are at yourself, which is totally understandable, try not to let her know, not that you in any way blame yourself. As I got older and began to want to open up and heal, this was the part that hurt the most; in the beginning my mother said how she blamed herself and it made me shut down, and I was 27 at the time, over 20 years after everything even occurred for me. It’s that feeling that predators bank on to keep victims closed up. Truly understand that it’s not your fault, there’s absolutely no way you could’ve seen it coming. Remember that, however it unfolded, you put a stop to it and that is the most important piece to remember as the days go on, to help show your daughter bravery and courage. I wish I could offer actual resources. I pray others will and that your daughter will find peace, and move towards being a survivor. No one should ever have to endure this kind of crap, but it’s clear she has an amazing support system already that loves her and that is such a huge piece in the puzzle.
Im so sorry that you and your child have to go through this. I know of a clinic near me (western mass) where they have an OT who uses sensory therapy to help traumatized children since some children dont benefit from play therapy. maybe there is an OT near you who can do the same. I hope you find something that gives both you and your child some peace.
My son with Autism was sexually, abused by his bio dad at the age of 3. it took kiddo until 15 yrs old to find a way to tell me. His bio had been convicted of abusing another child, was released after 4 yrs in prison and was on parole when he and his family attempted to force me into establishing contact betweem he and my child. I obtained a restraining order and have not heard from him since.
Remaining silent about this actually does harm. I tend to speak of sexual abuse as I would anything that occurs frequently with kiddos. LOTS of kids are sexually abused and I believe in breaking stigma.
So, no, you are not alone in this. Recovery is very different for kids with Autism. However, recovery is not impossible for our children. My son is doing really well.
Anon, I am so, so sorry. So sorry.
If you have the emotional energy, please contact me at AdvocacyWithoutBorders@gmail.com. If I can be of any help, I’d love to speak with you confidentially.
Praying for you both.
I am so very sorry for your family. I know first hand this is not something that many people are equipped to help you or her with. My son who is now 10 years old, also with Autism was molested repeatedly by a step brother when he was 3. Unfortunately we were unable to get any justice for my son as his father had means to “play the game”. We did win a settlement, certainly not enough if you ask me, when we sued my ex’s homeowners insurance. At any rate I’ve learned that it’s not so much about the abuse as it is about letting them feel what they feel. This does not by any means mean allowing the unacceptable, but creating a place where the unacceptable can be acceptable. My sons big, I guess I don’t know what to call it, but he liked and sometimes still does like to play with himself. We would be playing at the McDonalds play land and all of a sudden there he was pants down in front of everyone. We simply learned to take him aside and tell him he has to do that in the bathroom stall or his bedroom since its private. He has angry outbursts, then because of the Autism it becomes a chicken and an egg issue. Basically I allow him to feel whatever he feels as long as he’s not verbally or physically abusive to himself or anyone else. We’ve been at this for 7 years now attending weekly therapy and he’s making progress, so yes I believe that your little girl can come back. Maybe not exactly the same, but you’ll see her. As far as me, I chose to not know any more about it than my son has told me. Fortunately for me that’s not much. I also attend my own therapy, mainly for me to get out my frustrations, anger, and my feelings of failure in a place that keeps me from being swallowed up by them. My last bit of advice is well simple I promise, and with an Autstic child you’ve already learned it and likely mastered it. Wait quietly for those moments when you see your little one, not the molestation or Autism through the symptoms, but when you can really see her. Then you just hold on and wrap it around you until the next glimps. If you ever need anyone to talk to or even just vent to feel free to email me loui0049@icloud.com. I’ll keep you, your daughter, and the rest of your family in my prayers.
Jayme
Please also check the Facebook page. I posted your comment anonymously and there are a lot of responses there as well. Please do not feel any pressure to respond to any of them. xo
Thank you so much. Also, thank you for allowing me to reach out and remain anonymous. I may reach out to some people who posted that they might be able to offer me some advice.
anon, i am sending you support and vibes for you and your daughter! i’m heartglad that you got a conviction, and so glad she has you to support and help her. (i was sexually abused as a child adn i’m autistic, but i believed the abusers that they’d kill my family and i’d be sent to a home for bad girls if i ever told. i was in my 30s before i told anyone, after henry was dead.)
i don’t know if what helped me will help her, but i’d be happy to share what sort of stuff helped me (because i was so much older and hid it so long). you are very welcome to email me if you’d like to. (and if you need an anon email, gmail, yahoo, etc., make it easy these days to make one.)
chris
it’s not saying my email, anon, sorry! you can write to me if you want at starfire (at) catsnco (dot) com.
I want to thank everyone for posting here and on facebook. I am slowly trading through all the replies when I can. I appreciate all the responses and especially those who shared similar experiences. We all know how different autism can be from person to person. My daughter is able to verbally communicate and is in a full mainstream class with support. However, socially and emotionally she is very different than a typical 10 year old. Even the wonderful detective who interviewed Her said that while she was very matter of fact and used all the appropriate terms for what happened, she reacted the way they generally see children half her she act. (He wasn’t saying that in an unkind way.) The way that she seems to understand and view what has happened to her, along with some behavior challenges and other aspects of her personality make dealing with this more of a challenge and a unique situation. I have reached out to a few people from her school and am trying to find more help. We live in an area where there is a lack of service providers for all health services not just this. We don’t try to deny what has happened, or blame her etc.
I have a small circle of people who know. Again, thank you to everyone for your comments and suggestions!
That was supposed to say reading not trading!
I am a Licensed Clinical Social Worker, and the mom of a special needs child who was raped at 14. I also sit on my community’s Child Abuse Investigation Team. I am here for you if you want. I’ve worked with abused kids for 26 years, it’s my passion. You can contact me privately at lreisman@familyservicesgw.org whever you want. Or I am on FB. Laurie Reisman
Dear Diary Mom,
This is in response to your recent post from the mom of the child who was sexually abused.
From the bottom of my heart, my deepest sympathy. No one can understand the pain that comes from knowing your child has been abused, that trust broken, especially from someone they loved and trusted themselves.
My heartfelt advice is for the mother to get herself into therapy. The only way she is going to be able to help her child is by helping herself. By coming to terms, sort of speak. The blame and emotional pain that sets in came be all consuming and it is hard to help your child when you cannot even get through a day because you are constantly hating yourself. Wondering how you missed the signs? What could I have done differently? NOTHING! I am here to tell you that if you had known, it wouldn’t have happened. That simple. We trust people and especially family and could never see this happening. To move past that, you have to be able to forgive yourself. She needs you to be strong so she can be strong!
And don’t hide it. It will show her what happened is wrong and shameful. I know family would like to bury the secret but she and you did no wrong. The abuser did. So tell anyone and everyone you want and don’t be ashamed.
The biggest change I saw in my daughter was once I got myself “ok.” I had her in school therapy, private therapists (3 different ones) and was on guard at every moment. But once I had gotten through my emotions of what happened and became stronger and quit blaming myself, I noticed a definate change in her.
I am here to tell you it will be ok. It doesn’t feel like it now, but it will. And I empathize as I don’t have a child with autism so I am not sure how this journey will look for you, but if you work together on healing, you will come out ahead. There is truly something behind the words of not being a victim but a survivor!
I am not very eloquent in my words but I hope this came across ok. My heart is always open to share more as well as to listen.
I will be in prayer for you and your girl. Time will help heal. Be sure to take time for you, to see where your feelings are and what you need. She needs you most at this time.
God bless and keep you all close in His comfort.
Thank you. Most of the time I feel like I’m handling my emotions well, but sometimes I have a little meltdown I guess this morning was one of them. This happened late June and last week he was officially sentenced and that part is over with no trial thankfully. I got the letter with his sentencing info yesterday and I think that set off a variety of emotions.
Hi,
First of all, I just want to say how sorry I am and that you and your daughter are in my prayers.
I do not have the same experience but I was the victim of sexual abuse as a young girl. I didn’t fully reconcile what happened until I was a bit older and when I told my family, they didn’t want to hear it and swept it under the rug so I was forced to deal with it alone. I know autism adds a layer of complexity but I applaud you with all I have for standing up for your daughter and fighting for a conviction. You being on her side will be a huge part of her recovery.
Play therapy and art therapy were also both helpful to me when I was younger if those are options in your area.
Again, I will be lifting you up in prayer for healing and peace.
Best,
Michelle
I’m so sorry for what you are going through! I have been on both ends of this situation. I was sexually abused by my Dad for years. My Mom wouldn’t believe me as a child and still didn’t when I confronted her as an adult. Then after trying so hard to protect my kids from this, I found out my kids had been abused by a cousin! My Mom blamed my kids for messjng up family get togethers. My guilt was unbelievable! Your daughter needs to know it was nothing she did and that you and others do not blame her in any way! She needs your support I never talked about being abused until my Dad died when i was 27. And that’s when i began to heal and deal with the emotional problems. I was very promiscuous because I believed sex was the only way for people to show they cared. I found that’s very common. I don’t know how much your daughter can communicate, but if she is able to talk about it, let her. She will when she’s ready if she feels it’s ok with you. I’m sure this post is all over the place so I hope it makes sense. Don’t be afraid to talk about it yourself. I found just talking to trusted friends helped. You will probably be surprised when you talk to people that so many have dealt with this or had it happen to them. If we continue to hide this horrible evil we are giving the abusers the power they need to continue. I don’t think we can ever stress enough to kids that it’s ok to tell us when someone crosses a line. I hope some of these comments you are getting on here will help you and your child. And for others reading this, I had a therapist tell me the odds of rehabilitation are very low so don’t think people will change. It’s not worth the risk to our children. (Thank you, Jess, for allowing us to communicate with this lady on your site)
I am so sorry for what you are going through. I work in in-home services and I work with some autistic children and I have had experience with working with children who were sexually abused. There are children advocacy centers around that can help all levels of children. I don’t know the cognitive level of your child but the police should be able to provide information for the sexual abuse center in your area. Also TF-CBT is a great therapy model for trauma it stands for trauma focus cognitive behavioral therapy. However, if this isn’t an appropriate form due to your child’s cognitive abilities at this time then Art Therapy is a great option or Play Therapy. Any therapy that allows your child to tell his or her experience in a safe environment will be healing. Also trying to learn the trauma triggers will be important for yourself and your family in order to respond effectively in the moment. Some children we have worked with would escalate when a ceiling fan was going because there was one in the room they were abused.
Keep pushing. Don’t allow ANYONE to tell you there is nothing more out there to help or support your family in this. Keep fighting until you find the help your child needs. Also enter counseling for yourself. Autism adds a layer of complexity to raising children but now it would be important to learn how to parent through a trauma lens
With faith and hope,
Sarah
Whether a person is Autistic or not, the best, most complete healing will come through Love. lifting up your daughter and you in prayer. Release whatever is hateful, and treasure the blessings that come every day. In Love and Peace, Tammy J. Wampler
I would like to say (and hope it helps to bring closure to some) that I have a son who is high functioning autism and I had a very hard time coming to terms with that diagnosis because it was given AFTER my hyper, outspoken, angry, funny, charming, destructive, loving little guy made an outcry at daycare of being sexually abused. It’s been 2 years and I still battle finding peace with it. However, with all the ups and downs and medication introductions and failures… With all the one step forward and two steps back that we’ve experienced and I’ve taken as a personal defeat since “I am his mom and I am supposed to know how to fix this obvious hurt in my child’s life”… It has gotten better. As everyone knows, children on the spectrum express feelings louder and more physically then an average youngster. The best advice I received was by our third doctor who said “sexual abuse feels the same whether you’re 3 or 53. It’s simple. The victim feels powerless and they want to gain their power back by having control over anything… Just something.” And, when it was put into such a simplistic explaination, it made sense. The actin out and defiance – the lack of impulse control. That was explained as “whenever you are put into a scary situation, your body goes into a ‘fight or flight’ auto mode. My son was in such a state of internal fear that he inadvertently adapted to his situation and the aftermath of his brain staying in this “fight or flight” took control. “Get them before they get me” attitude. Taking “revenge” seriously, even for something as small as one taking to long in the shower so he couldn’t brush his teeth when he wanted. His need to control overtook the obvious of choosing to wait. So, after hearing his sister screech from him busting thru, he felt sorry and bad. Immediately after every action/reaction he had. We started allowing him to have control over some situations, while explaining that we have to take turns so it has helped. Unfortunately, there are different degrees and no blue print plan of what will help these children – medication wise, trust wise, or behavior theapy wise. We take it day to day while hoping he gains confidence in who he is again, when he is already facing the world as being different to begin with.
I want to reach out to the mom of the daughter that has been sexually abused. I’m just not sure how to do so. My daughter is SN and I have been there.
Anon, just wanted to let you know that I left a few links on the thread about this topic that was posted on the FB page for Diary. I can’t vouch for them, but hopefully there might be some helpful information in at least a few of the links.
My sister and I were both sexually abused by our next door neighbor when we were younger. While I myself am not autistic, my sister does. One thing I am going to recommend is something my mom told another mom when her child was abused. You need help too. Find a good councilor in your area to help you through this too. She blamed herself for many, many years even though she knew it wasn’t her fault, and she never could have known it was going on. You will experience more emotions working through this than you will know. Having someone there to help you will help you keep an even keel for your kiddo. As far as your daughter, check with some of the local autism groups if you have one, and see if they can recommend anyone. My sister seemed to play off a lot of it, but we had an exceptional councilor that worked with us. She didn’t have a diagnosis at that point, but she realized she had to work with her a little differently. I don’t think there’s any one way to work with the situation. It’s going to take someone willing to think outside the box a bit. It’s also going to take some time. I think the biggest issue we had was confusion over what was appropriate and what was not. We were told it was ok to do by the man who assaulted us over an extended period of time. He was almost like a grandfather figure to us. Then we were told it was bad by everyone else. Not that we were bad, but the act itself. Then with the whole keep it a secret thing or bad things will happen…. I think that was the next biggest hurdle. There will be a lot to work through as she grows older in that area as she gets older and needs to understand what a healthy relationship is. It won’t be pleasant, but you will probably need to address some of this over and over again as she gets older. With autism, it has a funny way of popping up when she becomes more self aware of herself. I send tons of hugs and love!!! And if you ever need someone to talk to, I am here. Please remember to help you too, and give yourself a hug. You’re a good mama:)
http://www.broward.org/HumanServices/CommunityPartnerships/NancyJCottermanCenter/Pages/CouselingUnit.aspx
My son had counseling here and did fabulously. They had experience with special needs. He is 13 and was sexually assaulted twice at school by another boy his age.
I don’t know where you live. This center is in Ft Lauderdale Florida. Before we moved they gave me a number for services that are provided free nationwide. If you call them I am certain they will give it to you. I have misplaced it.
Good luck to you with something a parent should NEVER have to deal with. You will prevail. xo
I don’t want to enter specifics here given the public nature of this. My daughter was molested by a neighbor of some little girls she was visiting. The girls attended her school; she had gone to their house to play (a block over). She went with one of the girls to the predator’s house next door. He molested both she & her friend. It took her 3 months before she told me – she said something which gave me one of those “whaaaat did she just say?” whiplash moments. Since the predator molested both girls, there was corroboration, which allowed for a conviction – although the sentence was fully probated. He had to register – and he had to move, as he lived too close to the elementary school. The process was NOT user-friendly – but because I knew something about the system, it was easier to navigate. My takeaway in the years hence have been: (1) Not to “should” all over myself – I took reasonable precautions & did the best I could with what I had (2) 9-10 year old daughter was not diagnosed, so I operated from NT point of view at the time. However, I have come to realize that Aspie and ASD girls are are greater risk not only for bullying but sexual exploitation…and the latter is is not really included in IEPs or openly talked about. In your case, you have the added dilemma of you feeling violated because of the trust in the family member, the splitting of the family loyalties (the two camps) and the pressure to not make (criminal prosecution) trouble for the predator…. My daughter is now 21 & has decided she is transgender – a decision, I think in part prompted by this experience. Counseling is available though the Criminal Justice system at no expense & possibly through either parent’s EAP program…but they will be unlikely to know how to deal with ASD….
I recently started working at an ABA-based afterschool center for kids with autism. Before I was hired, I questioned my interviewer about their behavioral philosophy and I was satisfied with her responses. However, now that I am working there I see things that don’t match up. Eye contact is a measurable goal and physical force is used for anything from escorting a tantruming child to hand-over-hand completion of art projects.
I’m not comfortable with the kind of ABA that disregards bodily autonomy and values “compliance” over communication. However, I also see a lot of good people and a lot of potential in this organization. I would like to approach them with my concerns and suggest different ways of accomplishing the current tasks. What alternatives can I suggest? Does anyone have experience with, for example, discrete trial training that doesn’t use physical prompting?
Katy, I’m hoping that you’ll get some answers here. If not, I’ll post the question on Facebook. It’s such an important topic and I’m grateful that you’re not just falling in line with a protocol that is so damaging to our kiddos.
Thank you, Jess! I feel like I don’t even know how to teach in this context and I would be so grateful for any resources people could share.
I’m commenting just to stay with this thread. I’d love to know what the replies are on this topic. Jess, I vote to open this on FB!
Stella
Stella, respectfully, the moderator is certainly free to do as they may wish. However, it is one thing to discuss my now-grown daughter’s autism on FB – and another to discuss her childhood sexual assault on FB. You may reach a wider audience by taking this out of a moderated group – but fewer participants willing to relate actual personal experiences. I for one, would not.
I think Stella was referring to Katy’s comment not Anon’s.
Yes, Arleen. Thanks for clarifying. I had replied to the comment via my phone and it didn’t thread correctly.
I was responding to Katy’s question.
Dear Jess,
I have been reluctant to comment on your posts due to the nature of my current situation.
Here it goes…
I am a grandma of three children who are currently in foster care. My husband and I are about to embark on the most amazing, yet “terrifying”, adventure of getting custody of these babies. I used the word “terrifying” because I am scared…one is autistic with a behavior disorder, all of them are under the age of 6. We have not seen the children since they were removed from there home almost two years ago. I want to do what is right and what is best for these precious babies.
I have learned SO much from your page! (I want to be like you!…you are an AWESOME mom!) There are so many questions! I’m not sure where to begin…
Any and all input is GREATLY appreciated.
firstly, i’m so happy for you and the kiddos. you’re all going to need support throughout the process. i’d engage any resources that you’re offered, from social workers to counselors.
while i have absolutely no qualifications to offer advice, the one thing that comes to mind is this – these kids, and especially the autistic kiddo, has to feel like life has spun completely out of his or her control. i would suggest offering choices whenever possible – giving him or her the power of self-determination when you can. also, find out what his / her language is. if it’s drawing, sit and draw. if it’s music, listen to it together. you don’t need words to connect, or to make it clear that you’re there.
also, alysia’s suggestion is a great one – google your nearest town / city with the word autism and see what comes up. if you find a local support organization, call them. let them know that you’re seeking a community for you and your kiddo. there’s no better balm to feelings of isolation than realizing that you’re not alone.
i wish you love as you embark on this journey.
Question for moms/dads/guardians of young men who shave – I’d like to get my sixteen year old ASD son an electric razor. He is blonde/fair skinned (not a lot to shave!). He has some gross motor issues (significant difficulty writing using pencil or pen but does just fine on computer hunting and pecking!, mild tremors, left-handed). Any suggestions on a product? Pros and cons of various brands welcome! Thank you!
Looking for any recommendations for a neurologist in the Boston/North Shore area. The couple that were recommended to me all ready aren’t taking new patients.
Robert Wolfe with Children’s sees patients at the satelite in Waltham. He’s the best we’ve ever seen.
I need to share…I hate using the word “vent” when it comes to my kid so “share” is the better choice. My son is a HS Senior this year. The school is creating a video yearbook and is asking for pictures…baby pictures and pictures of the students with their friends over the years. Ugh. I knew the group photos would be tough and tear inducing. But, I thought I had the baby pictures covered. I remember him as a happy, smiley baby. And he was….for a time. Now, as I look at the pictures, things become so clear to me. Things I should have seen, noticed but didn’t. In many of the family pics, he’s off in another realm. Not smiling, not unhappy, just expressionless. This is much harder than I thought it would be.
i get it. i really, really get it.
I get it, too, Susan. Here’s what I’ve learned (lots of it, thanks to DoaM): there’s a picture of my boy, now 11, as a toddler with a otherworldly expression on his face that used to bring me to tears for the very reasons you mention above – not smiling, expressionless. Compared to the photos of his younger brother at that age, he downright seems empty/sad. But, when I look now, through the lenses of what I know about him all these years later, I see him as focused, serious, deep in contemplation.
I now understand that my son has the mind of a steel trap. His thoughts are deep and require great amounts of concentration. I now look at pictures that used to bother me and breathe deeply, able to distinguish when to notice his intensity and understand it as a positive.
Hugs to you.
Stella
I have a 7 year old, 2nd grade aspergers boy. He went to a special needs preschool but started kindergarten in a regular class. As he has moved up in grades it has become increasingly difficult for him to manage. He has a LOT of anxiety, and he gets mad easily. In first grade he had aides helping him, but different ones pieced together throuout his day, and now has one side throughout the day. His aggression has gotten worse. He goes from calm to crazy in an instant & never seems able to implement his coping mechanisms. The school has subtly threatened to remove him to special Ed, where I feel he would be warehoused until graduation and never be challenged to learn, even though he is extremely bright.
My questions – is it wrong to medicate him to try and decrease the anger? And the aide is the person that spends all this time witb him yet i know nothing about her! There are no standards for sides – how do i know she is ths best person for the job and not the only one available? Does anyone else get info about theor child’s side?
This is a very hard question for me because I do not want to offend anyone at all. I have so many questions and absolutely NO ONE to ask. I don’t even know where to begin to find someone to ask. See my kids and I have no insurance so going to special doctors is probably NOT going to happen. However, I need to know if I need to change my mind and come out of pocket. When I ask my family they all accuse me of “looking for a label” I swear I’m not. I have a six year old son. He has ALWAYS hated being around people. Even if the people are family. For instance, this Christmas Zaquori and I sat in my bedroom and opened gifts because there were “too many things in there ” also I know that eye contact is a HUGE things for the autistic community. He can’t stand it and gets very very nervous when someone tells him to “look them in the eye when they’re speaking to him.” The final thing that made me step outside my comfort zone and ask was because the most recent picture of beautiful Katie when she realized she was going to sesame street. Her hand. The way she is holding her hand in a fist is what Zaquori does when he is nervous, excited, sad, anything. Its one of my signs that he isn’t feeling so hot about something. Ok so maybe I should cut to the chase huh? Where do I go? Who do I call? What kind of tests are done to determine autism? In don’t want a label. I have went six years without one. I want to know so if he in fact foes fall somewhere on the spectrum I can help. I can educate myself somehow. Again, I’m sorry if I offended. I am sorry if I sound like a total idiot. I love your girls and your family as if we were lifetime friends. Lol.anyone’s input would help.
Contact your school district. If you are in the USA, I believe school districts are obligated to asses when requested in writing, and it is free. This assessment enables you to get supports for him in school. Trust your gut. You didn’t offend anyone. You’re working to help you little guy. And labels are helpful when they accurately describe what’s going on and give us the tools to deal with the situation.
Here is a link to a bunch of helpful sites: http://www.autistikids.com/resources.html
Thank you. Jess I apologize for getting Katie and Brooke mixed up. They’re both darn beautiful I often forget names. I reached out to the school on December 18th. The school liaison is more misinformed than I am. She said that if Zaquori was indeed autistic that I would know. She said he would show other signs. This is after my poor guy got so stressed at a school assembly that he wet himself when they asked him to stand up to be recognized. He is such an amazing boy guys. He loves me like no other. I just feel like I’m letting him down. I want to protect him. Let’s say I’m totally of course. He has no autism. There is something that makes my guy crawl out of his skin at the first sign of stimulation. I am going to research the link you provided and I AM going to get the ball rolling to help my son this year. He needs me.
Hi – first of all you’ve come to the right place. This is the most judgement free place I’ve ever encountered, where questions like yours are welcomed, not met with offense. So I for one am glad you asked it.
I think many of us parents go through what you do – the gnawing feeling that something is different about our child but no one wants to see it or admit it or understand it. It took me a while to understand that there’s no shame in a label, in fact just the opposite. Knowing my boys were autistic has been both a relief and has opened doors to a whole new understanding of them and a community who believes in them and me as a parent.
So I say this – tune out others. You’re the parent. Go with your gut. What you’re describing is a child who is struggling in social situations and in school. It may or may not be autism. But that knowledge is power in knowing how to help.
And the question of where to go? If school is not helpful, start with your pediatrician. I get that insurance is an issue. Doctors will know where to go and if they don’t, seek out your local autism resource center or Google “the arc” and find where to go near you for testing.
Finally, keep coming back here. This blog and the links that Jess provides are where to get educated and how you can educate teachers and family and friends. I’d be lost without this community that has been created here. Don’t walk away – stay here with us so we can all go through it together.
Keep us posted on how it goes.
I was going to suggest your school system too, but it sounds like they weren’t much help. I would try them again and push the issue more. Explain your concerns and be specific about them. Follow the link that Pk sent and explain what signs you are seeing in your child that lead you to think he might be autistic. If you are still concerned, I would go to the doctor and talk about it. And look into Katie Beckett (tefra) medicare and if it is available in your state. Many states have it – it is medicaid for “disabled” children, which many autisitc kids qualify for. It would cover therapy and medication as well as basic health care for your child. To qualify, he would need a “label,” but if he’s on the spectrum, he needs the right services and treatment at school.
Happy New Year to All!!! We celebrated quietly as a family, the way we always do, because routine is so important to my guy. He’s 17 now and a senior in HS, which is prompting questions and conversations and self awareness on his part. He wants to go off into the world but he’s not sure how, and if he can manage it and if the world can accept him as he is. Today he came to me and said “wanna know why I always talk in quotes?” [Huge!!!] “Yes! I’d love to hear your story!” J: “when I learn new things, I have to make it fit comfortably in my brain. I need quotes to interpret things and make it comfortable. It’s my way of communicating with my brain.” Huge!! He left the room and came back 20 minutes later with “I’d appreciate it if people would stop asking me to use quotes.” Unbelievable! He sent me a picture with an amazing quote. I wish I could share it here but I’m not techie enough.
Two more bits of info from my guy: “My brain resets when I sleep, so when I don’t want to talk at night, it’s better to ask me tomorrow.” and, “I don’t like to be called ‘quirky’ or ‘special’. I prefer to be called ‘campy’. This day keeps delivering!
OK, maybe 3rd time is the charm. If the internet eats this this time, I will give up. I’m sorry that I only remember to pop over here when I am less than OK. I will try harder in the future.
This week, my family went through a trauma. My next door neighbor was murdered. It has led to a swarm of cops and media and onlookers. I had so many requests for TV and newspaper interviews, we couldn’t even leave the house until today.
I can’t go into too many details because it is an ongoing case and we have been asked not to talk about some things…but, my son was for sure traumatized by this. He has shut down all communications. He uses a couple of his favorite scripts and choice phrases (unfortunately, one of them is f–k you) but he is refusing PECs, communication apps, ASL (we are a bilingual, bicultural Deaf and hearing family. My 9yo is profoundly Deaf) or any other means of communication.
In addition to not communicating, he is acting out in less than OK ways. He stabbed his brother with a toy knife today so hard he left a mark, destroyed his sister’s book and exposed his privates to her. He is displaying self-injury that I have never seen before. He is violent…hitting, kicking, biting. He tried to escape this morning.
I need help but my team seems to be against our family. Everyone from victim’s assistance, his therapy office, his case manager etc is telling me that I need to temporarily place him outside my home.
They are telling me to consider a program called “Safe Landing.” It would take him for at least a week, maybe longer, to give our family time to settle. In some situations, I can see the benefit of this…but right now, I am afraid it would make him think I was abandoning him when he needs me most.
I need help. Any ideas?
My grandson is 4, in October he was placed in early childhood special education. He was diagnosed with sensory processing disorder and communication disorder. Keegan is very particular about his food that he eats or even touches. We almost always pack his lunch. I’m not sure where the issue came today but his teacher thought he was getting a hot lunch, his lunch was in his book bag. They had hot dogs which is one thing he likes and was even in his lunch bag, he refused to eat it. He either did not communicate he had his bag, they didn’t understand him or w/e, so he ate “nuffin”. He of course later had issues in the class. His routine was messed up and he hadn’t eaten. The issue later was over a chair, I have found that there are times that he doesn’t want someone sitting next to him. I believe this is ok and actually better than hitting. He just isn’t able to express why.
So here’s my thing, I received an email from her regarding lunch.
Hello,
I just wanted to give you a heads up that Keegan did not have a fish sandwich today. According to the kitchen the shipment did not come in on time. They had hotdogs instead. He refused to eat it. He did not throw a temper and cry, he just wouldn’t eat it. It appears he has a difficult time being flexible when things come up, especially when it comes to lunch changes. Maybe when you talk to him about his lunch, tell him there is a chance it might change. It only happens once in a great while but the menu is subject to change. So maybe help him start to be able to deal with changes and help him be more flexible by saying “This is what’s for lunch…but if it is something different it is ok to try it…”
Thank you,
Charlene
How do you take this? I feel like he doesn’t néed to be more flexible, she’s expressed this before about him. If Jess has taught me one thing since following her page it’s to accept him for what/who he is. Am I wrong? We’ve made it clear to him before school that you are taking your lunch today and discussed what he wants to eat so it’s not an issue. So, does he need to be flexible about these things?
Debbie/nana
Of course we always want to accept our beautiful children as they are, but we also want to help give them the tools to navigate the world. (And I don’t think those are mutually exclusive concepts.) Unexpected things do happen sometimes, and i think it’s up to all of us to help our kids figure out how to handle them when they do. I think it’s great that they’re reaching out to you. There is no greater tool than collaboration between school and home. I’d talk to them about your concerns and work with them to come up with a solution together that will act as a more effective safety net should it happen again. Hope that helps!
Thank you!
Hi, all! First off, I’m embarrassed I did not know this support page existed, and am so very happy that it does! My son was diagnosed with ASD in November of 2013 at age four. For the couple of months immediately after, I went to some pretty dark places. I credit this blog in part for bringing me out of that place and making me see all that I was missing. A major part of our journey as a family in the past year has been as advocates for early intervention in our province of Nova Scotia. We currently provide pivitol response therapy through a program called the Early Intensive Behavioural Intervention program. It differs a lot from ABA, I believe, and since my son has started the program in July (it’s a year long), he’s full of confidence able to better express his amazing ideas and thoughts and most importantly, is finding ways to self-advocate (“I need a break” or “There are too many people in my house” – last one said frequently over the holidays). Very long story short, we’ve been advocating for greater funding for EIBI, as the waitlist is horrendous with many families not being able to access this important service before they have to place their kids in the school system. This advocacy has given us a bit of a voice here, and as such, I’ve been asked to be a speaker at an upcoming TEDX event, which I’m thrilled about as I think it’s a wonderful platform to generate awareness and acceptance. As I’m writing my remarks, I’m being very cautious to make clear that I am not autistic, and so I can’t speak to my son’s very personal experiences. I also want him to always own his own personal narrative. As I’m just a mother of a child with ASD, I struggle with certain terminology, and don’t want to offend. For example, I have been using the term, “autistic” and not “person with autism” as I’ve seen a number of autistic adults say that is how they prefer to be referenced. I also want to make very clear in my remarks that while we are huge advocates for EIBI, and the supports and tools they provide young children with ASD, we are in NO WAY looking to change our son – this is not a cure, nor are we seeking one. Obviously, reading the 1,000 paragraphs above, I think I may have needed to just get these words/concerns out that I may make a terrible misstep during my remarks and cause offence in the community. I don’t want to come off as an expert when I am not one, but I want to be able to share our journey to date, and our hopes for how we will all proceed in the future. Does anyone have any words of wisdom on how parents of kids with ASD should conduct themselves when speaking about Autism, to show great respect for those who are autistic…not trying to take away their platform, but to help amplify their voices (verbal or non)?
Ally,
I forwarded your comment to a friend who is an autistic advocate and asked for her thoughts. I think this is some great feedback. Hopefully you find it helpful …
Honestly, the best thing that parents can do to amplify our voices is to insist that, if they are speaking at something, an autistic person should be too.
Sometimes speaking invitations are only for 1 person, and this doesn’t mean turning those down, or never speaking!
But it has a huge impact.
When I do speeches, one of the things I always talk about is who’s not in the room.
Who are we missing?
[For example,] “You invited me, and I’m honored. I hope to see an AAC user here too next time, or in the future.”
Hi Jess, I value that feedback very much. In this particular case, I don’t think I have much impact on the “lineup”. That being said, I also help to manage media relations as a Board member for our provincial autism organization. When approached for our comment on things like inclusion in schools etc. we should always be thinking of requesting the perspectiveof an autistic person. It seems so obvious, and I’m ashamed to say that it hasn’t been for me in the past. Well, we can only get better from here and commit to changing the way we act. Very, very much appreciate the advice.
Ally, check out emmashopebook.com – mother/daughter, and they have presented TOGETHER at some events. That might be an option for you. Also, check out ASAN (Autistic Self Advocacy Network), and the facebook page Parenting Autistic Children with Love and Acceptance – let them know what you’re trying to do and ask for input. Hope that helps!
Thank you, Patricia! Very helpful. I came across this article through one of your links. It’s really great. http://ollibean.com/2015/01/19/talking-to-autism-advocacy-organizations/
You’re welcome 🙂 Ollibean is GREAT – and also check out Judy Endow (http://www.judyendow.com/) – autistic mom, speaker, artist.
This is very powerful. https://www.youtube.com/watch?v=drf_lqRaV08 Thanks again for taking the time to link.
I’ll stop now, I promise, but this post is everything. http://www.judyendow.com/communication/communication-supports-for-speaking-autistics/
“This is because the majority holds the power in bestowing upon the minority. The assumed power of majority makes you superior, whole and right while making me less than, broken and wrong. You and I do not decide these things, but they are the societal assumptions we live by. In fact, you don’t even have to think about it, but if you do – whether you like it or not – being part of the majority gives you power over the minority. How do you use your power?
Do you honor autistic difference or do you insist your child do things exactly the way other children do them?
Do you try to find accommodations that will allow your child to participate in what you ask of him or do you express displeasure in or discipline him for failure to perform a task he has previously mastered assuming it is willful behavior?
Do you believe your child cannot do something when his access to skills and abilities are intermittent or do you assume that once a skill is performed your child is being stubborn or resistant if he cannot perform it consistently?
Many adults fear that if they listen to their child’s behavior or words they will be “giving in” and spoil their child. They fear their child may get away with something. After all, how do you know when it is the autism and when it is behavior? In my experience it is rare that it is only behavior. Instead, it is most often a function of autistic neurology – the way a person with autism understands and interacts in the world.”
She’s awesome. She’s also a poster on LinkedIn. If you’re on there, look her up. I belong to several groups and always enjoy her work.
I need help. I “get it” but, well, I can’t handle “getting it”. I understand my 8 year old grandson is ASD diagnosed. I understand he stims, and repeats, whines, is a picky eater, screams at the video games while hopping up and down for hours on end, and screams if he’s not allowed to. I have an issue with repetitious stuff ( come here, come here, come here). I’m weak. I spend every weekend at the end of my patience, with a massive headache, feeling like a failure because pawpaw copes so much better than I. The man has patience out the wazoo. Me, not so much. I want to have that patience. I want to.
The fact that you’re here and asking means you care. That’s the biggest thing you need, so you’re already ahead of the game. 😉
Here’s my suggestion, for what it’s worth – breathe. Walk away when you have to. It’s not easy to be patient when our nerves are frayed. Walk away or take a deep breath or stop whatever it is that you’re doing and force yourself to slow down and see your beautiful grandchild, not just the behaviors that you find challenging, but HIM.
“Come here” is the most beautiful invitation. I waited for years for “come here.”
“Join me, be with me, come to where I am so that we can be together.” That’s gold. As hard as it might be to hear it 82 times in a row, when you see the love in it, the desire for interaction – with YOU! – in it, it might just get a little easier.
I’d also suggest talking to his parents about ways to avoid meltdowns – maybe making a visual schedule for him of when he CAN play his games could help. It took me a long time to understand that when we told Brooke “not now,” she understood it to mean, “not ever.” Maybe he does too? Understanding seemingly small things like that can radically change the way we interact with our kids (ie, we can’t do that now, but we will do it at 3) and can ease their anxiety (and fear and sadness and overwhelm and lack of control and sense of loss etc etc) thereby diminishing the behaviors that they currently need to use to communicate those feelings.
You’re stronger than you think. I promise. And it sounds like you’ve got a wonderful partner with whom you can figure it out.
I hope that helps. Love is the perfect place to start.
I am a parent of an autistic young man and the director of a local nonprofit that works to improve life for those living with autism. How do we find ways to increase funding for those we love without playing the ‘pity card’? How can we show the need to support those with autism to the community at large? I hope this is okay to ask here–I love and respect this community so much and can’t think of a better place to work together to find answers.
Of course it’s ok! I’m going to send this to a friend who runs a non profit that serves our kids and relies on community support. She does a fabulous job at exactly this. Hopefully she’ll have some advice.
Thanks, Jess! You rock!
Hi! I’m the friend with the nonprofit that Jess was talking about. We’ve found the best way to raise money for our sensory gym is to highlight the families that we are helping and let them do the influencing – through pictures and through testimonials at our in person fundraisers and online. They are the ones living it everyday and they are ones who share how we’ve made an impact in their lives.
Additionally, we try to bring our donors in to our space to see our programs in action so they know where their money goes. Both before and after they donate. Keeping that connection going.
Finally, We are firm believers in the “and she told two friends and they told two friends” method of fundraising 🙂 There’s no pity card there. Just the personal sharing of our stories and connection. Once one donor and family believes in us and our mission, others come.
I hope that helps a little!
Hey there,
I have been putting off writing this question for a few weeks now. I have been crying instead, and now I finally feel like the crying has to end and I have to stand up and face things… so here I am, not sure if anyone here can be of help, but maybe you can.
I’ve been following Diary for a long time now, my 13 year old son was diagnosed with PDD when he was young and then Asperger’s / ADHD a little later.
Thanks to you Jess, and this amazing community, I have learned that I am not alone in thinking that what most people assume about autism and asperger’s is not at all the whole story. I never succumbed to a doctor’s diagnosis of what he was supposed to be capable of. Now, my son is thriving.
Until a few weeks ago, I felt like we were pretty much rocking life.
My younger boy, (5) has also experienced delays. While some of them seemed to be “spectrum-y”, things just didn’t add up. At his last IEP meeting, the school psych affectionately called him a “puzzle’ they can’t figure out.
She suggested I take him to a pediatric neurologist.
Long story short, the neurologist told me she is fairly certain he has OCD and disruptive mood disregulation disorder (also known as pediatric bipolar.)
I was shocked. and yet my gut told me she was right. All of my little boy’s behaviors add up to exactly that. (and my ex was diagnosed with that before we divorced.)
I know who I am- a mother who looks a diagnosis in the face and says – NO – you will not define my child, you will only be a guideline for me to figure out how to help him be the best person he can be.
I know that. But I still feel like a house just fell on me. Like I’m in a new dark room, and I can’t find the lights – and like with my first boy, it’s going to take me years just to find the light switch.
I know in my gut it’s because of the stigma of mental illness.
I know in my gut it’s because I don’t trust doctors.
I comment here a lot, saying how much this blog means to me, but It was such a joy to have Jess and community of people saying, hold on a minute, DOCTOR who told me my older son would never have friends, I don’t think so, you don’t know my son just because you read about him in some medical paper.
I am afraid of what doctors are going to tell me about my little five year old boy.
I am afraid that they will say he has to be on medication for his entire life. (is that a rational fear? I am getting advice that I am crazy to feel that way. which isn’t’ helpful. is there anyone who has experience with this and the kinds of meds that are out there?)
I am also afraid my sweet boy is never going to be able to handle his violent mood swings and he will be sad and angry without knowing why for his whole life. (rationally, I know that won’t be true, but how can I make sure that it won’t?)
I am wondering if anyone knows of any great support groups such as this one, for OCD/Bipolar – or any thoughts on this topic at all…
Thanks for the space to privately air these thoughts (that while I know they are okay to process through, I’m not proud of having)…
Oh, honey. I don’t have much, but I do have a giant hug for you through the ether. And all that knowledge that you have that demystified autism? That debunked the myths and allowed you to see so far beyond the stigma? You’ll be on that same path with this now. You’ll find that three quarters (seven eighths?) of what you think you know isn’t true. And now that you’ve got a template for that process, you already know where to start. I know that NAMI has some good resources (http://nami.org) so that might be a good place to start. Just remember, he’s still the same kid. Now you have some tools to help him navigate the tough stuff. Hang in there. I know it’s overwhelming, but now you’ve got a place to start.
Jess,
Thank you so much. That means a lot coming from you. I did not know about nami.org – checking it out now.
Yes, demystifying, debunking and loving.. that is what we are good at here. 🙂
Thanks again for your quick response.
Hi Amanda: First off, I’m sending you a big bear hug. I’ve been to that dark place, I think many of us here have been there, and the good news is that there is a way out…it may just take some time to get there. And that’s ok. Let yourself process all of this. It’s a lot.
Secondly, I was diagnosed with OCD when I was in my early twenties. I had moved to a new province (I live in Canada) and my OCD tendancies went into overdrive. I finally went to see a professional, who diagnosed me right away and made me realize that the major struggles and challenges I had when I was a child was because I had undiagnosed OCD. I guess I’m telling you this, and I hope it helps, because I wish that I had been diagnosed earlier, and that it had led to supports and resources that could have helped me manage the tornado that was happening in my brain. I don’t know anything about bipolar disorder, but I do know that some of the more severe mood swings were due to my inability as a child to stop the obsessive thoughts and the compulsions I felt I was required to complete.
Long story short, you’ve got this, mama. Your children are in wonderful hands, and while the road ahead seems daunting, being able to at least have some sense of what might help and which road might be worth travelling down could make an incredible difference for your kiddo. Trust your gut, follow your son’s lead, and take the professional advice you think will help your family. Things will get easier, and the days won’t seem so overwhelming.
Ally,
Thank you so much for your response which is incredibly helpful. Your words did feel like a big bear hug. 🙂
And your perspective is so right on and what I need to hear – better to learn this now and figure it out than living in the dark and not knowing what is wrong.
I am sorry you had to find it out later in life.
All the very best and thanks again,
Amanda
Hi Amanda,
I’m “emma at lemon peel” over in Jess’s list of “autistic adult blogs” to the side there, and in addition to taking a number of medications (a couple for ADHD, a couple for anxiety/depression) at the moment, I also happen to be a giant psychology, diagnostic theory and pharmacology nerd. It’s…something of a special interest, to put it lightly. And I can try and share what I hope is some concrete support/advice you’ll find constructive or helpful.
When it comes to dealing with powerful, complex medication possibilities and children, a few important things come to mind first for me:
Medication should always be about helping the medicated person feel more safe, more comfortable in their own body/head, more able to engage and participate in the world in the way that they want to. Most psychiatrists aren’t great about this–for those with “behavioral problems” in particular, there’s often a focus on normalization, and/or on reducing those behaviors make the caregivers and physicians feel stressed or uncomfortable. And when the person being prescribed medication is a kid–not to mention a kid with developmental differences–it’s even easier for parents and doctors to feel comfortable making medication decisions for the patient.
Also, your gut feelings concerning the medications and treatments specifically employed to treat bipolar spectrum/behavioral issues are entirely justified. I have a large number of friends who are my age (college-age) and bipolar, and finding the right medication regimen (if medication works at all) continues to be a complicated, often unpleasant process for them even as young adults. The medications in question are numerous, diverse, and often powerful in their ability to help people live their lives, and in their ability to cause side-affects that suck.
All that said, these are some things I know that can help/be done to make this as positive and constructive a process as possible for your family in general and your son in particular:
1. As much as you can, engage your son in the process of figuring out what supports and/or medications–if any–make him feel better, and which do not help, or make him feel worse. Make sure he knows that the reason you and his doctors are talking to him about possibly taking medicine is because all of you want to help him with things he struggles with, and with experiences he finds scary, painful, or confusing. Even ask him, if he’s willing and able, what parts of having his brain and his body are the hardest, or the biggest problem from his perspective. And if/when he tries a medication or other treatment, check in with him about how he is feeling, talk about any changes you notice, or he notices, in his emotions and behavior. Make sure he knows that when it comes to determining whether or not a given treatment/medication helps or hurts him, his opinion is the most important opinion. Figuring out medication, especially, is a process, and that process can start at many different times in a person’s life–trust your gut, and your kid, and together you’ll be able to stand up for what you think is or isn’t necessary at this point in your lives.
2. You mention that your ex also received a bipolar diagnosis. Obviously I have no idea what you and your son’s relationship with him currently is, but I do know that when it comes to psychopharmacology, knowing what medications worked for a parent (or sibling) can often make finding the right medication a much quicker and easier process. If your ex, your other child, or any of your son’s other close biological relatives have taken medication for bipolar spectrum disorders, and had good experiences with one or more specific drugs, finding out the names and dosages of those helpful prescriptions can really help doctors figure out what medications might help your son.
[Real Life Story: My father and I are extremely similar personalities, we’re both on the spectrum, I look just like him, etc. etc. And when I started medication for depression/anxiety, my psychiatrist made sure that the first thing we tried was the medication my father has been taking for depression/anxiety for decades. Not only was that exact same medication life-changing for me as well, it turns out that me and my Dad take the exact same dosage as well.]
3. Keep your worry and your skepticism close at hand–medication can do great things, but for some people it simply does not help them in the ways they need to be helped. Some of my bipolar friends take medication. Some do not. Different people need different things. You and your kid are always the best judges of whether or not medication is contributing to, or detracting from, his comfort and wellbeing. Doctors are great resources, and integral to getting access to documentation and lots of supports…but you guys always have the right to say “No, that is not a treatment/strategy we are going to try. No, that is not the problem we need to focus on. No, those are not our priorities.”
I hope that was helpful, and my heart is with you all as you figure these things out. If you have any more questions, feel free to email me at the email address I give on my blog page.
-Emma
Emma,
Wow. Thank you so much for taking time out of your day to respond so thoughtfully. I really do appreciate it. That information is so helpful to me.
I really love the reaffirmation that any medication given to him is to make HIS life easier, not mine.
I think you hit on something that I didn’t realize was stopping me from seeing things clearly…
In the question to medicate, I’ve only been seeing it through my own perspective, do I want to put my son on medications to stop “tantrums” or “disruptive” behavior”. Of course not. I’m not going to put him on a pill to make my life easier.
I had totally overlooked that the reason for the medication is to help him in HIS life. and that as long as I continue to communicate with him, and make sure I’m listening to what’s helping him… I will find the right path.
Thank you for reminding me of that. 🙂
Big hug of thanks to you,
Amanda
I love this so much.
I’m just stepping in here to say this was one of the best exchanges I’ve ever read here about this topic. Thank you Amanda for asking the questions and Ally and Emma for sharing your personal experiences so openly and willingly so we all can learn.
I hope lots of people read this exchange. Thank you.
I am so grateful to have a safe place to ask these questions. Thanks, again, Emma and Ally – and Jess.
Hi Amanda,
It’s been a while, but I wanted to ask for your permission to share some of the above exchange as a post on my blog. What I wrote in response to you included a lot of things that I hadn’t really put into words before, but that I feel super strongly–and my reply would make the most sense if (at least a few parts) of your initial question were included as well. I’m fully open to either including only abbreviated versions of your post, or editing my own reply so that it can be shared on its own without further contextualization. Let me know what you think/what you’d be open to.
Thanks, and I hope you and your family are well!
-Emma
Hello all. I follow several autism related groups on LinkedIn and the following question came up. (http://tinyurl.com/k3prhus)
Self inflicted hair pulling (no Trich diagnosis)
“Any thoughts on a 17 year old male (Autism) pulling out his own eye lashes and chin hairs? Parents are resistant to medications and there is concern amongst his Team that addressing this behaviorally (R+ for hands down/alternative and incompatible behaviors=unsuccessful) such as verbally, gesturally, or with a slight guide to have his hands down increases frustration. We just went through a 6 week period of the student working 1:1 outside of the classroom (special education school) because his aggression became very volatile…now he is back integrated into the classroom and this behavior of pulling out his own hair has risen to significant levels. Thoughts?”
Are there any autistic people who have experienced this and can comment, or can you direct me to a blog or post that might be helpful?
Thanks!
I’ve been there. When your anxiety levels spike to a certain level, pain can help ground you. The symptoms here are aggression, stimming, and hair pulling, but the root of the problem is anxiety. Anxiety at this level is a big red warning flag.
The best tool I know for someone in that position and age is to give them a sensory haven that he can use at HIS discretion. An unused quite room where he can de-stress can work wonders.
Unfortunately this is counter intuitive to most administrators in a school setting. Allowing him a chance to control himself rather than submitting to authority is not in the standard rule book and probably wouldn’t work with most of his same age peers, but those of us on the Autism Spectrum are wired differently. He desperately needs some measure of control over his life before his anxiety becomes overwhelming and he suffers from a major breakdown (which could be in the form of a violent outburst) or has a complete mental breakdown ( which is very common for those on the spectrum at that age).
Medications could be helpful in the long run, but finding right medication is a process that could take years, and in his situation it is common for doctors to just try to tranquilize him into compliance.
John Mark McDonald
Scintor@aol.com
I loved this quote from today’s post, “There’s comfort in the familiarity of repeated dialogue. This is what we do.” That is all we do here with our little guy, he always asks the same questions that he knows the answer to, and I can tell it is because it calms him to have the safety of concrete information in interactions that can otherwise stress him. This isn’t really a call for support, just a message of love for this community and this site for making me smile when I see similarities in other people’s family adventures. 🙂
I need to start this by saying I only asked my son to get ready for bed a little early as he was yelling at me….
When talking to my son about what had happened, My 7 year old just hugged me and told me he loves me even if he thinks I’m going to kill him. After I calmly asked him if he thinks I’m going to kill him, he explained that when I punish him, he is reminded off me killing him. He had said shooting him with a gun.
I had asked him to get ready for bed and regretfully said without a book:/
he had thought that I didn’t care about his little sister because she bumped her head, started to cry and I said that she would be okay & she was just tired) really, i was tired.
I think it’s painful for him to loose that privilege. Because its a nightly ritual. And he normally, typically has great days. Without time outs or loosing a bedtime story. I was trying to show him that its unacceptable for him to accuse his parent of not caring about them (him and/or his sister)..? I wasn’t mad, a little fed up. But not mad. His behavior had been a little challenging all evening. But when he screamed at me accusing me of not caring. I thought to myself, he needs to know that’s not okay. He is very smart. Now in retrospect, I think I could of explained that I understand how he came to that conclusion, but that he was mistaken. Explained and counted the ways that I care about both of them VERY much.
He would have learned his “lesson” just aswell. Better.
Because he would have had his calm. He understands why he was in trouble now. (I just invited him to get in bed with me and I’ll read him a book)
How can a mother hear this kind of stuff without tears?
He experiences things differently, sometimes more intensely. Now that he has explained to me that when he is in trouble he is reminded of dying, me killing him… I’m thinking I can explain to him why I think he is feeling that way?
I just asked him if he thinks I would hurt/kill him, and he said “no, it’s just a feeling.”
Thank god. Seriously? I already try to only implement positive affirmation as opposed to negative consequence… But now?
I think I need a someone to say they understand
I understand. And the fact that he can tell you how that feels for him is, as hard as it is to hear, a really amazing thing. It’s a wonderful opportunity to talk about what it means to love one another unconditionally, to explain that we can be angry or frustrated or sad and none of that changes our love. That’s good stuff. And it’s hard.
My son is 7 years old and attends a typical class with supports. He needs a lot of support and from what school says, it appears he is getting a lot of it.
He has become aggressive recently at school – kicking, spitting, hitting etc.
He is not able to tell me why, since his conversations are mostly scripts. We actually can’t have a back and forth conversation beyond immediate questions like if he wanted something to eat etc. He has also been resorting to aggression at home for the slightest frustrations for the past few months. This was not the case before.
He does get breaks at school in a quiet room with beanbag chairs. Nevertheless, I am guessing that part of the problem is sensory overload. I wonder if the other part is frustration that he is unable to do things as well as the other kids (fine motor tasks, playing games, etc.). If so, how can I help him process this?
My knee jerk reaction especially to aggression at home is taking away his ipad privileges. I really don’t think it works though and seems to make everything much worse. I don’t know what else to do though and would love some feedback. Thanks!
I apologize that I don’t have more time to answer more fully, but this might be helpful –
http://wearelikeyourchild.blogspot.com/2014/05/a-checklist-for-identifying-sources-of.html?m=1
Thanks Jess.
Hi! Having been in your place when my son was six, I understand your worry and perspective. It’s hard not to have knee jerk reactions to the behavior, especially at home, but his is where remembering that “behavior is communication” is so key.
In addition to the link that Jess provided, I would ask the OT or whomever designed his sensory breaks or plan to do an “environmental study” – meaning observe him in class for the day to assess where and when the sensory overload happens. Looking at things like transitions, where he sits in the classroom, how he sits in the classroom, who he’s sitting next to, the lighting, recess/cafeteria, when his breaks happen and who suggests them, what sensory tools does he have in the classroom, who is facilitating his breaks, etc.
Seven was around the age when my son started to become more aware that he needed the self-regulation, but didn’t have the words to ask for what he needed. Our OT told us to watch for huge changes around ages 7-8 in self regulation needs. It might help for them to take another look.
We also tried to talk to our son about his frustrations when he wasn’t in the moment. Sometimes that helped too.
Good luck. I know it’s hard when you see your child struggle in a new way, but he’s definitely trying to tell you something.
>
Thanks so much! Will have a conversation with the school to see if this is possible.
What do you do when you have a young extended family member on the spectrum, with profound symptoms (at a care facility), you live too far away to be part of their lives, and those closest have NO idea about presuming competence?
On top of that, you’re shut down by the parent and ANY information (NOT advice, just info, blog posts, etc.) you have to share that might be helpful is refused because “your child is not like my child, so you don’t have anything I need to hear”?
I have a good relationship with local aunt, and another uncle, but the aunt can’t “see” past the exterior symptoms – yet. How do I respectfully drop breadcrumbs? Or do I butt out? I just want them to have the tools to have the best situation they can have. I know it’s not my struggle, but I love them.
the reality is that i think that there’s only so much you can do. keep gently planting the seeds and hopefully a time will come where they are able to let them take root. but in the meantime, if you push too hard, you lose the ability to be heard.
Writing again about my 4 year old grandson. OT has suggested we get some items to help him deal with SPD, any recommended places to get these? Weighted blanket, that stretchy thing Brooke has, possible swing, etc. also, if you know of any places that lend/rent objects instead of purchasing them? Support groups or pages besides yours ;). I am finding nothing in my area as far as support groups, classes he can participate in, etc. any ideas are greatly appreciated.
Hi Debbie,
Online check out websites like The SPD foundation and Sensory Planet. Both will have info about products that help with self- regulation and potential support groups or local resources, depending on where you live. As for classes, check with the OT or a local therapy clinic. Lots of times they run sensory based classes. Good luck!
>
Thank you, I actually found the foundation last night, I’ve yet to find support groups in my area. The OT knows of nothing in our area unfortunately. I’ll check out Sensory Planet to see their products.
If you or anyone you know sews, you can find a several patterns online to make your own weighted blankets. My son’s OT gave us a pattern that included how to determine the right weight for how big your child is, and my mom made one for him. He doesn’t care for it yet, but he loves the 4 lb. stuffed animal lizard that she bought him off etsy! There are a lot of handmade sensory weighted blankets and stuffed animals on etsy too.
My son, A is 16, autistic, and in the same grade as my NT daughter, E, who is 14. Friday, E came home all excited, and said that a boy (also a freshman, also 14) gave her flowers (nice) and asked her out (hmm).
So my husband and I said, he had to come to dinner first, and it had to be a group outing. No one on one dating until you’re 16. (I thought this was very reasonable of me. Especially since my first unspoken thought was, ‘oh, hell no!’)
She was ok with that, and she texted the boy to let him know that she could go under those conditions. He texts back, “Oh…” Then radio silence. By Sunday, she was feeling pretty low. When she came home from school today I asked her if she had talked to him, and after a little prodding this is what I got:
boy: so I guess the movies aren’t going to happen.
E: I said I could go if you came over for dinner.
boy: yeah… well…
…
Me: well what?
E: He said A is weird and he doesn’t want to be around him.
So I stood there with my mouth hanging open, and my beautiful daughter, who has more class in her pinky nail than some people will ever muster, said, “It’s ok, Mom. Obviously he just isn’t worth my time.”
I’m so sad/proud for her, and disgusted with this boy, and this little belligerent part of me wants to call his mother (who is the school nurse and knows A), and say, “do you know?” But that’s just not what you do. So I’m dumping it here, because I think you guys will get it.
ugh.
Your daughter is a gem and big hugs for both of you
Hello all! Looking for suggestions for learning/playing tools with a Mickey Mouse theme. My 11 year old nephew is non-speaking; not sure what his cognitive level is (we live far and not too much info comes from his parents re. this). Grandma met an autistic artist at a local (for them) Art 4 Autism and he suggested keying in to what grandson (my nephew) likes. I’m just thrilled to pieces that this little perception breakthrough happened.
Any ideas? Perhaps something that can grow with him? That starts at an “entry level” learning tool, but is flexible if he is more competent than is currently perceived?
Thanks!
My little boy has just started 3 year old kinder. I am wondering if anyone has any resources/advice they could point me towards that would help me to write a letter suitable for informing the other parents in my little boy’s class that he is on the spectrum. I think it would help if I could explain why things are a little different for my boy. Thanks.
Hi Jess, Laua, Katie and Brook Happy Valentines Day, ready for the storm?
RANT….Grandson (4), potty trained since summer although he had accidents maybe once a week up until Christmas break. Had two accidents in one day with only one change of clothes. We live about 15 min. from school, we did not receive a call stating they needed clothes. He came home in a DIAPER and someone else’s pants. Rant over.
Does anyone have experience with genetic testing? Or autoimmune diseases and autism? I’m an autistic mother to autistic twin boys and a daughter with “autistic tendencies”. I’m going for testing soon on myself and I wanted to ask if there are any specific questions I should talk to the dr about or things to specifically be tested for? Thank you in advance for any and all advice!!
When I think of the word “compassion” I think of you, Diary of a Mom. I’d like to know your thoughts on compassion. Do your girls know the meaning of “compassion”?
I have a favorite quote from Brooke that comes to mind when I think of kindness and compassion. It’s this one: “If you feel like who you are, then you should.”
Brooke doesn’t know the word, but she certainly lives the concept. Katie says it means to understand in a loving way. 😉
A sad story, local to me. This is my attention to keep attention on such an important topic. It’s important for all of us to keep talking about how to keep ALL kids safe from school bullying. Especially when the schools can’t (or won’t) protect the children.
Hello Jess, I don’t know if this is the right place to put this I tried to just find a private email or message area. So sorry if this is not the proper place to put this. Anyways, My daughter, also autistic and my hero because she is such a beautiful young woman is a budding animator. My mother and also a friend suggested I share this with you and thought your Brooke may like my daughter’s art. My daughter just turned 16 and dreams to do animation on Future Disney movies, etc. We are currently looking at colleges already to prepare her for the future (gasp!) She is a straight A student, cheerleader (during basketball season) helpful daughter, sings in the praise team at school and in our church choir. She also mentors other children within the autistic spectrum, teaches comic drawing to classes of elementary students – while also educating them on understanding autism and how bullying is wrong. I could list a million things that make her special. I know you can relate. She has learned to tolerate, adapt and accept so much ….she has learned to overcome and have strength in the differences that make her unique.
She has her own comic on FB it’s called Preston High (just for fun)
https://m.facebook.com/profile.php?id=526501530703847&tsid=0.9497898949775845&source=typeahead
This is her latest animation it took over 300 drawings to just do one minute of animation, last night she placed 2nd in her school talentshow. I wish I had a copy of her presenting it but unfortunately I forgot to hit the start button on the video camera on my phone. I thought I got a wonderful video but I had nothing…ughhh. Because if this child doesn’t become an animator she could be a stand up comic. Lol.
Anne Gowens (proud mama)
Ps. I forgot to mention – no one has taught her any of this. She is completely self taught and modivated. We of course encourage her and she has done many fasion of art but ♡’s comic and animation. This is her escape from the world, this is her “calm” she takes her notebook everywhere she goes. We bought her a new computer, drawing tablet that concepts to the computer and software to help make her animations easier to produce but she still prefers freehand. 😉
This is AWESOME. She sounds like an amazing kid and I completely understand why you are so proud!!!!
Thank you for sharing 😉
Your welcome. Thank you for all you are doing and for sharing your journey with your family, autism, the smiles, the tears, the triumph the set backs and the adventure. 😉 I have watched you inspire and educate so many since I’ve begun to follow you on FB – Thank you. ♡
Aw, thank you.
A friend of mine sent me a video about the Gemiini program- A video monitoring program to help teach language. Has anyone used it?
We just started using it two weeks ago. My son is 4 and severely apraxic (non-verbal but not autistic.) We learned about it through a friends PROMPT therapist. I like that it gives me something structured to do with him at home. Between full day school and after school therapies I was finding it difficult to be consistent at home with any kind of therapy. If you have specific questions about it, let me know! The developer is also very responsive to messages sent to her via the Gemiini Facebook page.
Thanks!
Hi Cate, I have also been looking into Gemiini. How has your son done with it? My son is 4 years old also, and he’s autistic. This program looks intriguing to me.
I’m currently a general education teacher going back to school to be a special education teacher. I have been following this blog all through my undergrad years – so for about 5 years. I absolutely LOVE hearing from all different perspectives of families who have children with different abilities. I have learned so much more from this blog and other blogs linked through here, then I think I’ll ever be able to learn in college. That being said I recently heard about a program called Son Rise – I just looked at it briefly online, but I’m wondering what families here think. As Jess always says – please be careful of each other when commenting. I am merely curious as the family of one of my future students have started this and I would like to hear information from different people that I have come to “know” via Diary. Thanks! Also, any thoughts/resources on inclusion and LRE would also be appreciated. 🙂
Hi everyone! Can someone, please, help me with an advice about what time tracker/watch is better for kids with special needs? My daughter(6yo) is loosing the track of time at school(at the bathroom); I explained to her about the fact that at school she needs to be fast but it’s not working. She told me that yesterday she got in trouble(not allowed to play at the recess) because she spent too much time at the bathroom; I am thinking that maybe having a device with a visual/audio alarm may help her more. Today we just got the official diagnosis(after so many years of “inconclusive results”) – this means that we are just in the beginning with everything.
Many thanks in advance!!!
You want a good durable watch. Many of us on the spectrum have difficulty with spacial orientation, which means we run into things a lot. I cant tell you how many watches I have broken over the years by misjudging where a wall or doorway is and shattering the watch.
There are plenty of good durable watches out there some of which serve as fidgets as well, but as someone who has lived on the spectrum for 45 years, I believe that this may not just a time problem. In school, the bathroom can often serve as a sensory break room. It is isolated and relatively quiet. As gross as a refuge as this may seem, it is often better than nothing.
You might want to step back with her and see if there are any significant stressors that are making it where she needs a significant time to regroup just to make it through the day.
John Mark McDonald
Scintor@aol.com
John, thank you so much for your advices!!!! I didn’t think that she may take refuge at the bathroom – no excuse for me to not realize this!
We started to keep a journal (at home and the teacher at school) about her days in hope that this will help us more to see the stressors.
From the bottom of my heart thank you so much Jess, John and everyone that I found here, for all the help!!! There were moments when I felt like I am walking in the dark, that I do not know if what I am doing for my child is good or bad; but, knowing that I have this community support page, where I can ask for helpful advices, is really big for me as a mom. Thank you!!!
Thank you for today’s post, Jess. My son has been going through incredible anxiety the past few weeks, and we’re struggling to understand how to best help him. He’s worked so hard to be able to say, “I’m sad” or “I’m frustrated” or “I’m scared”, and I always want that to be acknowledged. I’m super worried about his transition to big school next year, where his anxiety may be perceived as “attention seeking behaviour” (Gawd, I hate that phrase…) and not acknowledged, which of course will escalate the anxiety and then they’ll lose him for the entire day. I don’t really have a point with this post, I just needed to have a place to say that things are really hard when communication is a challenge and when you’re watching your child struggle to navigate a world he doesn’t always understand. Mostly, I just want to say thank you for being so honest about this journey as a parent. Love, the most rambling lady on the Internet.
Oh, honey. I get it. I just get it. It *is* hard when our babies hurt.
I have a two year old son. He is ahead on all his motor skill milestones, and about level with his oral skills, however, he is quite behind on his communication skills. We have had him evaluated and the therapist doesn’t believe there is any significant delay she thinks it’s more a matter of him getting comfortable using gestures and screaming for what he wants instead of talking but he did qualify for speech so we started yesterday.
During the evaluation we were told we could be present during the first few sessions but that eventually he will do better if we let him go alone. As a teacher this makes complete sense to me. However when we got there yesterday the therapist almost shut the door in our face and was clearly very frustrated that we wanted to stay in the room. My husband and many of my coworkers believe we should let him go alone. My gut says “not yet.” I believe after a few weeks he and I will be ready and he will go easily on his own, but I don’t think we’re there yet.
Am I just being overly anxious? Should I trust this therapist that we have only met once or is it understandable to want to observe the beginning. I want to know what’s happening so I can continue things at home as well as making sure that I can trust this person.
I have no professional opinion here, just that of a mom who also started my son in speech therapy at age two. He’s been going for a year now and it has been wonderful. Both my husband and I sat in for the first 2 or 3 sessions. My son didn’t speak a single word during the first one, even though he was verbal (just wasn’t putting any of those many words together). He needed to be comfortable with her. He has been the type always, since he was an infant, than people need to earn his trust. It would have been a disaster had we just forced him back there with her alone. But that’s us, and our son. After a few sessions we stayed out in the lobby and he cried half of the session. But she worked with him and he grew to love going there. Before long he would just wave goodbye and take her hand and pull her to the back.
Anyway, the point of my rambling is, you know your son best and how he is going to respond to the situation. You also know what your gut is telling you. Yes, she needs time alone with him at some point in order to do her thing. But she also needs to build the trust in you, and most importantly in your son, in order for therapy to work. That said, I would be leery of any teacher or therapist that flatly told me that I couldn’t observe.
Thank you!
That sound a lot like my son. I know he will do fine on his own once he’s comfortable.
I think she was just surprised the first day, yesterday she was wonderful despite the huge meltdown he was having. She even let me participate and help.
I know many parents will probably agree with me on this, I know this is the right thing to do and he needs the help but it sure is a scary road in the beginning.
Hey Everybody!!!, my name is Andre I´m from Brazil!! I found this blog this week, and I think you can help me. I´m finishing my final college project, to be graduated in Industrial Design and I chose the autism to my main theme. I’m researching about the theme and I made a research to parents that have a child with autism. Could you please answer my online research? Or disclose to another blogs or friends????
The link is: https://pt.surveymonkey.com/s/YQG8CW9
If you can, I’ll be extremely grateful. My email is domsatrian@gmail.com, if you have any doubts or questions can send me an email.
Thanks for let me disclose my research here Jess…
Andre Luiz
Hello all! I’m reaching out in hopes that someone can give me a fresh set of eyes. Our beautiful 5 year old daughter has been struggling with Encopresis for years. We have been spinning our wheels for years. The situation has become increasingly worse over the last few months and we are really struggling to find support. She has had all of the appropriate medical testing and we are following all of the prescribed protocols. While we’re making small bits of progress we are struggling mightily with her ability to let anyone know she’s had an accident. She’s incredibly verbal but has a significant pragmatic language delay. Her self esteem is dwindling as the children at school are beginning to notice and make comments, and cleaning up after 13-ish accidents a day has left everyone feeling exhausted and frustrated. She doesn’t seem to understand the consequences of not being clean, touching feces, smelling like feces, or spreading it around public spaces. Myself, her tss, bsc,and gi are all at a complete loss. We’ve tried many different methods and approaches over the last few years with little success. We’ll be meeting with a psychologist next month to discuss this and some coexisting difficulties. This is really a condensed version of the story but I’m hoping someone might have some advice. Thank you!
I don’t know where you are located but Boston Children’s Hospital has a great program for Encopresis. We have been going there for about a year and though not fully potty trained we are down to having bowel movements once a day occationally twice a day and we have it timed with medication that it typically happens after school hours. From what I’ve learned if they are going 13 times a day they are still backed up and letting little out at a time. The kids need to be fully cleaned out to be successful even trying to feel or help understand what is happening. Again not all kids are as successful as others but it’s been a great help and have taken great leaps in the right direction.
Hello, I am at such a loss. I don’t remember how I found your facebook page, what seems like forever ago, but I did. Today my high functioning ASD son finally told me where he got this absurd idea that he, as a human being, is wrong. First, I died, then we cried. I told him over and over again how not true that is. How do I begin to help my son? Where do I start? We received a diagnosis through the school district psychologist. Other than the basics he doesn’t have much outside support. I want to scream and cry and tell him he never has to go there again. I am so heartbroken. How do I tell him he is valuable and precious and deserving to be cherished so that he can hear me?
Thank you for your time,
Barbara
barbara,
i find that one of the most validating ways to tell our kids that they’re not wrong and not alone is to show them. i’d suggest introducing him to the writings of autistic teens and adults (emma’s hope book is a WONDERFUL place to start – she writes often about her pride in who she is), my friend M at Invisible Strings is another – he writes about growing up feeling painfully different, hopeless, wrong, then coming to understand that the only thing he was wrong about was feeling wrong.
I am convinced that introducing my daughter to people who share her neurology and showing her how much i respect them has been a huge part of cultivating her self-esteem. our kids have no reason to believe us when we tell them how awesome they are, right? “you’re my mom, you have to say that,” is a pretty common refrain with my older one 🙂 but when they see us and hear us and KNOW that we respect and value those like them, it’s a whole lot more believable.
i’d also suggest, if you can, finding a safe space for him to express his feelings that’s not you — a social worker or psychologist, a therapist who is familiar with autistic communication and can help him communicate what he’s feeling in his own way, then maybe help to offer some concrete strategies for getting himself out of the rabbit hole when he feels himself slipping in.
i hope others will chime in, but those are my initial thoughts, not as an expert, not as an autistic person, but as an observer.
xo
Hi everyone! I’m looking for suggestions for goals that support communication & interaction with peers for my 9th grade daughter’s IEP.
She has cerebral palsy, is non-verbal ( uses sign language & her DynaVox to communicate), and also has many sensory needs that present as somewhere on the spectrum. She is VERY social and cognitively on grade level. However, because of her many physical needs, she mainly interacts with adults.
I know that Jess has shared that Brooke has something written in her IEP about emailing home during the day. Does anyone else have ideas to share? My girl is lonely and she wants a best friend so badly. She is beginning to become a little clingy and obsessive with people she has only met once or twice. It’s not healthy. I feel like I need to help her facilitate some friendships, I’m just not sure how.
Our community has a couple of programs aimed at pairing up kids who fall at the same developmental level. If they don’t have one of these programs, maybe you could urge them to start one? You could contact the Special Education department of the schoolboard and ask them if they know of any resources for parent’s in your position.
Hey guys, my ex used the word retarded in a name-calling joke and i want to send him something to explain why i chose not to use that word as an insult. The problem is, for me, that word has always felt wrong wayyyy before the movement to end it began. I’m not sure how to explain it. Does anyone have any posts, Jess’s or otherwise, that give a moving account of why using that word as an insult is not okay?? Thanks for you help!!
http://www.r-word.org/
https://adiaryofamom.wordpress.com/2011/01/13/thats-retarded/
I am putting together a packet of information for patents of newly diagnosed kiddos. Most of the packets will go to kids in early intervention so they are not yet school age. As parents what kind of information or resources would you like to see in there?
i’m wondering what to do… i learned this week that my child’s school is observing “autism awareness” on later this week by having everyone wear blue. i also learning that they are having an assembly and having a local representative from Autism Speaks come and speak. i’m really not happy about it and i know that the school wants to be supportive but that they think that this is the only organization out there. i’m not sure if i should speak up (especially since i don’t know exactly what this person is going to say)
any thoughts?
you could send them this .. https://adiaryofamom.wordpress.com/2015/03/18/to-the-students-of-my-alma-mater-thank-you/
so i took a deep breath and sent an email to the principal including a link to your post as well as a short excerpt and some of the other concerns. ultimately, i really just want to be promoting a dialogue with our school. from the start, i’ve tried to make it clear that i believe that we’re a partnership and we need to work together to help my son succeed. it’s been 4 years and seems to be working. fingers crossed
Hi! I am trying so hard to find an oral chew necklace for my 8 year old. She sucks and soaks her hair, clothing, dolls, pencils, fingers, everything ….and her peers are now noticing. Until this year the oral fixations were an inconsequential, rare event but now they are frequent. Very. Supportive teacher; we have tried gum and it helps, but she often pulls it out to stretch and manipulate it and that needs to be corrected.
Anything that has worked for your daughters??? And that looks “cool” or at least not babyish. i was even thinking amber teething necklace in black or something!?
Any successful product purchases that anyone can recommend?
Thanks! K
http://m.nationalautismresources.com/chewable-jewels-hexagon-necklace.html
These are great for school as every kid I know chews on the end of their pencil anyway —
Also try stimtastic.co – autistic owner 🙂
Hi everyone,
I have a question about RPM. It’s becoming clear to me that this is an amazing resource and tool for so many people and I’d like to be trained in utilizing it. I think some of the kids I work with would benefit tremendously from it. My foremost question is: if I were to be trained, would each child have to be trained with me, or would I be able to use what I learned without the child going through a formal training? I work at a public elementary school and I suspect that there would be a lot of red tape and hoops to go through. The program I work in is primarily ABA-based (though generally not in the ways that would make me cringe; the people I work with are fabulous and are great with our students) and I don’t know that there’d be a place for RPM in it as it currently stands, but I would love to pursue it if possible. Is anyone here trained in using RPM? I’d really appreciate all of your thoughts! 🙂
Jess, I’ve been following your Facebook page for about 6 months and I can’t even begin to tell you how much I’ve learned! I have a nephew who is 5 years old. I begin noticing at around age 2 that he couldn’t verbalize his wants/needs, tho his younger cousin could tell you what he wanted in English and Spanish. Instead he would throw a tantrum. He couldn’t handle being around the (rather large) family without having a meltdown. His mother’s lap was his comfort area and I was good with that. I’d sit next to them and speak to him softly, trying so hard to make a connection. I told my partner that I thought he may have some form of Autism. No one listened to me. During his Dr visit before he started school, he was diagnosed. His mother doesn’t talk about it much (she didn’t tell any family outright, just posted a meme on FB about how Autism is real). When I see his pictures, I notice he wears his backpack all the time. My sister-in-law said you can ask him how he’s doing and he will give you the response “Good, thanks to God,” but if you ask what he wants for dinner, he still can’t tell you. Thanks to this page, I will be able to talk to his parents and see where they are and maybe suggest some tools for communication. His parents are young and no doubt scared, but I look at Brooke and think “There is nothing he won’t be able to do, in his own way.” So thank you! Thank you, Thank you, Thank you!
Hi Jess,
I’m a relatively new reader to your blog. My 4 year old son was diagnosed with ASD about a month ago. Your blog and FB page (which was recommended to me by two unrelated friends have completely and positively changed the way that I’m viewing his diagnosis. Thank you so much.
I have a general/theory questions for those out there who have walked this road much longer than I: as I have been researching various treatments, doctors, and facilities (I live in Chicago, so we have a wealth of health care facilities to choose from) I have noticed that some autism programs are run out a hospital’s mental health facility. Others are run out of their psychiatric departments. Still others are run out of neurology departments. Is there a difference between the way that autism is treated that is correlated to the department? Or is it simply at the discretion of an individual hospital or institution under which branch they would put autism since it cuts across many disciplines? Would a doctor based out of a psych department be more likely to want to prescribe medication, for example?
Thanks 🙂
welcome! it’s an interesting question. b’s initial diagnosis was from boston children’s hospital, where it is part of the neurology dept. that said, when we told them that our biggest concern was helping her mitigate her anxiety, they told us that because of her age, they had no answers. i wonder if perhaps a psych dept would have had more resources in that vein. i’m guessing that there are both pluses and minuses to both. the best i’ve found have been those who take an integrated approach and where various experts can work together.
I’m looking for help for my friends’ sons. One has autism (6 years old) and one has SPD (5 years old). Both lost their grandmothers this week and the mamas need help with answering the physical questions about death. The boys are asking what happens to grandma’s bones, and why the bodies are buried or cremated, etc. There are tons of books on dealing with emotions but facts are what the boys are looking for and are harder for their grieving mamas to process and answer. Any suggestions?
i can’t seem to find anything that fits the bill. it sounds like they have some great questions. i’d suggest that the best way to answer them would be factually – ultimately bones decompose over time, etc. depending on their belief system perhaps tell them that we bury bodies to return them to the earth as their soukls go to heaven. i searched around a little on amazon. i don’t know either of these books, but maybe they’d help?
this also looks like it might be helpful, though still doesn’t really offer the scientific answers you seem to be looking for .. http://www.hospicenet.org/html/talking.html
Thank you! I’ll pass it along. I was surprised how difficult it was to find.
I have a friend who needs some advice (no really, it’s for a friend 🙂 )
She wants a good article/blog to explain her 8 year old autistic son to family members who ask her son directly “why do you always create problems?” It deteriorates quickly from there and my friend ends up leaving. She basically wants something that helps explain that he has difficulty with social interactions and discipline is not the answer.
Any advice?
Show her this blog. Jess has a ton of great link on the side. The Hiardryer Kid in a Toaster Brain world (or something like that) is a great one for explaining autism in simple, understandable terms. And I know you weren’t looking for my opinion on the matter, but family or not, if anyone continually treated my son like that after I explained things to them, I wouldn’t be around them anymore.
Does anyone have a link to a blog by any autistic person talking about if they feel they’ve been publicly shamed by their parents? I am trying to convince my local Autism Society that they need to stop posting the A$ type articles that they do.
kris, an autistic friend of mine talks a lot about these kinds of issues – respect for our kids’ privacy esp vis-a-vis the internet. she has a facebook page called giraffe party. i’m thinking she’d be a good resource if she has the spoons.
(Hee. Jess answered me.) Love your friend’s giraffe party facebook page!
Does anyone, autistic especially, have info re. biting vs. chewing? Such as why biting (of others) might occur, triggers, etc.? And does having chewelry possibly help if anxiety is a part of the issue? Or would chewelry encourage biting? Asking for a friend whose nephew, who does have communication challenges, occasionally bites during visits. Thanks!
Looking for your feedback, Jess or anyone with similar experience:
It is currently being suggested that I revisit the idea of my 10 y.o. daughter returning to school. I have been home schooling her for the past 18 months. We have been learning at her pace and have had minimal meltdowns. We have made progress both emotionally and educationally.
When I look back at how school was for her, it makes me sick. She was constantly overstimulated, publicly shamed, and not given assistance in social situations as I had suggested repeatedly in IEP meetings. The last straw was in the middle of 3rd grade. She was progressively regressing in every aspect. After repeatedly working with IEP coordinators for 3.5 years…I finally knew what question to ask and what answer I needed. I asked the IEP group, “Do you have the tools and resources to carry out the IEP plan? Do you have the resources to intervene in social difficulties and prevent them from escalating? To keep my child and others safe from physical harm?” The answer was no. I then un-enrolled her.
I have asked her if she is interested in going back to school. She said yes. However, I am scared of a repeat and further emotional damage. I wish she was able to attend, lord knows it would be easier for me. At this time it is still really difficult to get her to complete a task, a usual, everyday task without several reminders, pep talks and bribing. So I don’t see a classroom being successful at this point.
The reason this has come up is because I recently lost my job. I was working from home, about 20 hours per week. Looking for new jobs and the nature of my talent is mostly in-office, 9-5 types. This just won’t work with our family dynamics.
The question from the “suggester” is that ‘why don’t I believe that she can do it? She has made a lot of progress.’ Their heart is in the right place, but it sounds denial-ish to me.
Although I would love for her to be successful in school and would like to think I am open minded to the idea…I don’t see it right now.
I feel it is my priority to provide my daughter with the best environment, even if that means my work/income will take a hit.
Thank you to Diary Of A Mom Community, you all have been so immensely helpful when it can feel quite lonely on this journey. (((hugs)))
Sorry to hear that you lost the job. I’m sure that makes everything a lot more stressful to contemplate.
I think the real question is: if they didn’t have the resources before, has anything changed now? If the answer is no then the next question is: has her ability to adapt changed enough to make that work? If the answer to both of those questions are no, then it sounds to me that it’s still not an appropriate environment for her.
That doesn’t mean, however that there are no other options. Under IDEA, every child is entitled to FAPE – a free and APPROPRIATE education. If your district can’t provide that for her in her home school, then they have an obligation to either rectify that or find a place where they can.
I know it’s overwhelming, but perhaps it might be helpful to remember that home and her home school aren’t necessarily the only options on the table.
xo
Thanks Jess, I was unaware of IDEA. I will look into that. 🙂
Look at wright’s law website. It’s a wonderful resource for learning your child’s rights.
I would strongly suggest looking into getting an advocate to assist you with the process and help educate your family about your rights. Depending on where you live, you might be able to find one at little to no cost. Here in Mass, the Federation for Children with Special Needs is a great resource. If you’re not in Mass, check with your local ARC.
Hi. I’m not sure where to post this, but a friend suggested I reach out to you guys for help in promoting my son’s book, so hope this is ok! Alex has autism, social anxiety disorder and avoidance personality disorder, and wants to be an inspiration for young people both with and without disabilities, to never give up if there is something they want to do. “Martyrs” by Alex Sands is the first in a series of 13 dark fantasy books for young adults, and is available on Amazon – here is the US link, but is also available in other countries. http://www.amazon.com/gp/product/B00YWF24VC?ref_=sr_1_4&s=books&qid=1438718040&sr=1-4&keywords=alex%20sands&pldnSite=1
Morning! While there is a big long backstory to my question that I’m going to leave out… I hope someone can offer me some advice. My sweet girl is preparing to enter Kindergarten. The school district has decided that, despite the massive amount of evaluations and assessments we’ve provided them, they need to complete an intelligence assessment. They are requesting that I drop my girl off with the school psychologist for two hours and wait in the office while they complete the assessment. She is emotionally fragile and struggling mightily with social and separation anxiety (we’re in the process of addressing these difficulties). I fear that pushing her into the care of an adult she’s never met will completely overwhelm her. As her mama it’s hard to separate myself from that role and look at this from a school districts perspective. Am I required to do this… The leaving her alone part? Do you have any suggestions for compromise that the psychologist might find acceptable? Any advice is welcome.
what i would strongly recommend is having them break the eval up into more manageable parts. i don’t know too many kindergartners who can sit through two hours of anything no less one with added challenges. our neuropsych still breaks brooke’s evals into 3-4 sessions (rather than the typical two) to take some of the stress off of her. as for you leaving her in their care, you’re going to have to do that for school every day 🙂
Thanks Jess! Breaking the assessment up is a fantastic suggestion! I think I’m struggling with leaving her because we’ve never met the psychologist. We’ve spent the entire summer getting to know her new teacher and knowing that her wonderful support aide will be with her for all school hours. This would be the first time I’ve ever left her completely alone with a “stranger”. For every eval we’ve had outside of the school district I’ve been allowed to remain in the room. Not participating but there.
then ask that the teacher or support aide be there so that there’s a familiar face. 🙂
That’s just what I was hoping to hear would be an acceptable response from me!! :). Thank you!!
Any tips/suggestions/advice on potty training an autistic 4 year old? He is capable of doing this – just won’t. He will go once in a while when he’s in the mood, but that’s it. We’ve tried bribes of everything he likes and they only work for a little while and then he’s just “no.” We tried the whole “being just like Daddy and your big brother” bit, but the novelty of that wore off quickly too. It’s hard because we both work full time so he’s in daycare, plus a special needs preschool program during the day – and he clearly doesn’t care that he’s the only one still in diapers. He talks well enough to tell us that he has to go, so that’s not an issue.
If it’s not an issue for him, who is it an issue for? If he’s not ready, maybe he’s just not ready.
Good point. I guess it really doesn’t need to be an issue now. We’ve got a year before it is – he’s tracking to go into mainstream kindergarten with one of the types of support, but he will have to be potty trained by then. We’ve got a year.
Trying to train a child that is not ready is pointless. When my son was ready, it was done in a weekend and he never had an accident (until he was older and got into video games anyway!) I have a second child who is 5.5 and not trained. He is nonverbal, not interested and does not seem to have awareness & control. Some ABA people offer to train him and I declined. It would end up being the equivalent of training me to take him on a schedule. When he is ready, he will be trained. Until then, diapers it is. We have lots of other stuff we can work on in the meantime.
I don’t know why any special needs preschools that would be opposed to having him in diapers.
Hi Karen,
We’re in a similar boat. Our son is 4 and was just diagnosed in April. We’ve tried on and off for the last two years to potty train and in the past month he’s finally getting the hang of it (#1 only, #2 is going to take longer judging by his current reaction to it). I agree with the sentiment of “they’ll do it when they’re ready” so if there is no awareness at all then I’d back off and try again in a month or two. My son is echolalic so getting him a potty training app helped him get the vocabulary to tell us that he has to (though it’s inconsistent).
Good luck!
I am trying to figure out how to ask what I want to without it being too personal because I see that there’s no way to escape my public facebook profile and full name from being attached to this post whether I like it or not. I guess I’ll just ask, what kind of doctor or person would an adult see who needs to be evaluated for ASD? If one lives in a tiny rural town and has a doctor they like a lot but who is best used for sniffles and animal bites but not this? Where would one start? Thanks!
i’ve used my magical moderating powers to remove your last name and unlink the link. 🙂 … i’ll check in w some folks who have had similar experiences and see what they come up with. that said, you might want to start w the doc in town and ask them if they know anyone 🙂
Jennifer, one thing I would do is try any psychologists in the area and just call and ask if they have experience with autism spectrum adults. I also lived in a very small rural area…the first person I spoke with, I did not ask any questions in advance and it turned out, they were unfamiliar with the autism spectrum for the most part, had never had any clients on the spectrum, and the interactions were very unhelpful. After that, I found someone who knew a lot more about the issues, had experience and it made all the difference. So pre-screening is what I would recommend…just call around, ask about experience with spectrum issues. it’s not the best answer in the world, sorry I can’t think of more at the moment, but hopefully the pre-screening questions can at least be a start and lead to the right person.
Thank you m13kelter and Jess! Sorry I didn’t get back sooner, I had used the “find” feature on the page to look for my surname(s) and obviously didn’t find them so it took me a bit to realize I had replies. 🙂 I asked my family doctor since I was there anyhow for something else.. just said “umm do you know anyone around here who can see about doing an assessment for Asperger’s? You remember how my middle son was diagnosed with tourettes and both have had issues with anxiety and depression, and we’ve all been medicated off and on for ADHD? I think this might sort of help to explain a lot of that.” Apparently “ADHD” was the right word, because he referred me to an internationally renowned psychiatrist and ADHD specialist in my area who has both an MD & PhD and who patented the QEEG and uses it in his diagnosis process (this is technically an ADHD evaluation which seeks to identify other potential diagnoses as well including anxiety/depression/Asperger’s/OCD/etc). He is an out of network mental health provider, so I will have to pay cash. It’s $175 per session and he splits it into three sessions. I know this is FAR cheaper than a great many people have said their evaluations were, otherwise I wouldn’t be posting these details. I will have my first appointment in several days. I wonder if this QEEG thing being used to help diagnose people is something that is controversial? But either way I will do it since I find the idea intriguing and I love the idea of seeing what’s going on inside my brain when I’m doing tasks. (edited to add – I’m having trouble getting the page to let me post this reply, so sorry if it shows up more than once!)
Thanks again mkelter for the advice and Jess for your magic touch on my name. ha gone to my regular doctor and asked for a referral, and he gave me the name of a psychiatrist in my area who specializes in ADHD and who has both his MD and his PhD… my doctor thought that if this guy couldn’t help me, he could help me find someone who could. Since I am on ADHD meds anyway, it was a decent fit for a doctor (except he’s out of network so I had to pay cash for the three assessment sessions).
I had the last appointment yesterday and will have the written summary next week, but bottom line is that he agrees that Asperger’s is a good fit for me. Because of the DSM-V criteria changes and the integration of AS into the ASD spectrum, I’m not sure what he’s decided to call it exactly. He said “is it classic autism? no, not at all, there are no language delays” and then described some other behaviors that I do not display which all were descriptions that typically are found in people who might not be at the same place on the spectrum as AS. Then came to the “fear of people” (his words) and “pragmatic language problems”, the depression and sensory sensitivities, and so on – after listing all the imaginary boxes I tick off and do not tick off in his brain he summed it up in a way that left me unsure if he’s saying I have long standing social anxiety disorder AND depression AND pragmatic language disorder as three separate entities or whether I have Asperger’s and those are some of the qualities which helped him to reach that conclusion – he made it sound like the DSM-5 is the thing which is standing in the way though. Which to me says Asperger’s (except it doesn’t exist anymore, now it’s all ASD, but I think one of the ASDs is PLD anyway, so… ugh so much information flying at me and no notepad to write it all down on left me unsure what exactly his bottom line was).
I don’t know. Not sure the label matters as much as having him confirm all the stuff I knew. But then again, it sort of does. I didn’t need a list of things that is wrong with me, so much as a REASON for the list of things that is wrong with me. I’m not sure I got that. It will take some time to process. I will wait and see what his official written summary says, but he’s the one who verbally summarized our visits with a talk that culminated in the word Asperger’s so I guess the only question now is how he personally decides to use the DSM-5’s classification criteria on me. Anyway.. just wanted to update because I’m shocked that it only took me a month to get from asking you all who to see, to wondering why the DSM-5 has to make it all so tricky to get a proper diagnosis. That’s a very good turnaround time, and also my story hopefully helps to illustrate that you don’t need an autism specialist necessarily to get a diagnosis.
alright I wrote and rewrote that and it’s going to have to be good enough this time, I need to stop second guessing myself all the time so will post. Most important part of this comment is the THANK YOU to both of you for your time and help!
Jennifer, I’m so glad that you were able to find the resource that you needed. My gut is to say that, after the conversation that you had with the doctor, no matter what the DSM-V might constrain him from putting on paper, you already have the answers that you went in seeking. 😉
Jess, sort of. He validated that the issues I have, have names in a book that lists mental illnesses. But he didn’t answer the real questions prompting the appointment. Things like “why doesn’t anybody ever like me” and “why are people so mean all the time” and “when will life stop being so hard” and “how many tiny pieces must my soul be torn apart into before I will stop feeling the tearing sensation” are harder to find answers to. I guess I could start small with something like “how do I stop picking, because I have so many scars and it bugs my family that I can’t stop with my hands/fingers/picking” but at my age I don’t really see it as an issue any more… it’s a better nervous habit than chain smoking or something anyway… I don’t know. Baby steps. At least now I know that it’s okay for me to comment on aspie blogs so I’ll take it I guess.
Hopefully through the connection to that community, some of those answers can come. After years of hanging around these parts, I can tell you with certainty that you are not alone in asking them.
Thank you for taking the time to reply to me, by the way. It’s just a hard day. Sorry for being so negative. I’m gonna go find some of your posts about your dad. They always make me feel better. thank you for doing all that you do.
You’re not negative, you’re hurting and that’s understandable. It’s a lot to process and it’s never a straight line. Anything this human is bound to be messy. And today’s post is about my dad.;)
I saw m_kelter’s post from yesterday on facebook at Invisible Strings, about “why seek a diagnosis as an adult”.. I wanted to post a reply there but don’t want to post it from my facebook… so will simply leave it here in order to get it off my chest at least…I had hoped a diagnosis would help me feel better about my perceived failings, because before my diagnosis my husband kept saying “what the hell is WRONG with you??”.. problem is, afterwards he just said “well, I no longer have any hope”. It’s only been a few days. I feel worse than ever now. I have no idea where to go from here. We’ve been married over 20 years. I have no support system in the form of friends or family. I’m drowning here. instead of gaining any understanding all I got was written off and given up on. that feels very, very bad. anyway… just getting it off my chest. don’t know where else to go where people might understand.
so sorry to hear this is happening Jennifer. I’ve had similar experiences with family, where prior to a diagnosis they were ashamed about my differences…after a diagnosis, they just refused to discuss it…they remained unsupportive, determined not to understand anything about me. my sense is that people who don’t want to know the real you pre-diagnosis will not change all that much post-diagnosis, unless they are willing to educate themselves about the spectrum and put effort into knowing you, not just insisting you fit into a certain role. with the post about adult diagnoses, it’s definitely true that it doesn’t magically make everything better…but it’s also true that without it, there’s no real way to get a handle on issues that relate to spectrum traits. I can only speak for myself, not others, but I know in my case, a diagnosis did not make anyone else more accepting…it just helped me better understand what was going on with the way my mind works…and over time, I slowly learned to advocate for myself…I learned to define myself and develop coping strategies that were beneficial instead of letting other people constantly try to make me into something i’m not. all of which is easier said than done, of course. but it is amazing how reluctant other people can be to see the value in an accurate diagnosis and be supportive, sorry again you’re having to go through this. for me, the first stretch of time after a diagnosis was tough because there was this question of, “how to I mesh my new understanding with the world and the people around me?” those first days were the toughest, and it became better over time as I learned to prevent others from making me feel ashamed. it helped to have a therapist who was experienced with the spectrum, she made a big difference in terms of how I processed the information. really hoping you can find safe people, supportive people, to give you some breathing room as you sort through all of this.
I couldn’t reply to the most recent comment so had to reply to this one instead. I just wanted to say thank you for being nice to me.
Jennifer, your post this morning broke my heart. Stick around the people who ARE nice, not just to you, but just nice. If they’re not around in real life, spend time with them here, online. Because you deserve to be treated well. You deserve to be respected. You deserve some help in walking this path.
The fact that there’s a reason for your challenges doesn’t mean there’s no hope. It means there’s hope for deeper understanding of why it is what it is and therefore how to mitigate the hard parts and leverage the good stuff. Although I know it can be a tough sell, I would very, very strongly suggest that your husband seek therapy too.
hey Jess, I hate to be the one to give you a broken hearted kind of feeling, I know you’re a Deep Feeler like I am, and tears come easy. I do think he needs counseling for a number of reasons but when I told him that again a day or two ago he said what he always does – “I don’t need help, I already know what my problem is – YOU.” It is what it is. A whirlpool in quicksand. and I’m in the middle of it. if I wait long enough it’ll all fall away hopefully. For now I will keep standing very still and hope to blend into the background while it all swirls around me. Even at my age (in my 40s) I just want my mother right now but she’s gone, and so is everyone else, so. yeah. I will wait and try to be invisible for awhile.
Oh, Jennifer, you deserve so much better. Every human being does. I hope you can find the real life support you need. A good therapist will be a great place to start. I’m sorry it’s so hard.
Jennifer, I wanted to reach out with support to you. Though I am not autistic, I have been in the place where you are, with a “partner” who lays all their own garbage and shortcomings at your feet instead of taking responsibility for themselves.
Autism or not, relationships are hard. You have made an effort to figure out “what makes you tick” so that you can be a better partner in the relationship. The most telling part of your story, is that HE is not willing to be a part of the relationship, to make things work better.
He is making the relationship issues ALL about you, and that is NOT the case. HIS unwillingness to work on things, HIS lack of empathy, HIS desire to have things the way he wants them, HIS attitude is the problem.
I second therapy for yourself, regardless of what your husband is doing; because when we are injured inside as we have been, we need to take that time and care to get our foundation back and to find our value again. Once we do that, it can change everything – it’s often still hard, but we know we have the strength and that we deserve to feel OK.
Ask M about his therapist – perhaps she can make a referral to someone in your area.
I wish you the best as you reclaim yourself with this new piece of understanding. It sometimes feels worse before it feels better, but with the love and support of the Diary crew – we’re here for you – you will come out the other side of this. Many hugs!
I just wanted to stop back in and thank you all again for your kind and supportive words and advice. I’ve been laying low and processing stuff mentally and emotionally, and reading. I get a lot out of reading and writing, much more than I get out of speaking/conversing conventionally. So I ordered Steve Silberman’s NeuroTribes on Thursday, got it on Saturday, and finished it yesterday. I had already done the same with Tony Attwood’s Complete Guide to Aspergers two weeks ago and Temple Grandin’s Thinking in Pictures, and the Autistic Brain last week. Then I started a blog so I have a place to put down my thoughts, feelings, etc. so that I’m not constantly coming back here or otherwise piggybacking on other people’s posts while I try to figure this all out. But I wanted to come back to thank you all again, and to ask:
Are there any other books that anyone would recommend as “required reading”? I feel like I’m not done learning yet.
Thanks. 🙂
John Robison’s Look me in the Eye is a fun read and offers a lot of insight. I think you’ll enjoy it. Another of my all time favorites is ASAN’s Loud Hands Anthology. It’s wonderful.
Hi! I’m in need of support. I have a daughter with autism in a 4 year old preschool class. She is in a regular classroom with IEP support. She has been there about 2 1/2 weeks. Two things have happened that I am very uncomfortable with. 1. When she had a meltdown, the teacher videotaped it for her portfolio. That seems like a violation of her human rights to me. 2. The principal came to observe my daughter, and the teacher purposely read a book that is a trigger for her, sending her into a meltdown. Thoughts? Suggestions for what I can do? Any agencies or organizations that I should contact for support.
caroline, i’d start by calling a meeting with her IEP team. (you have the right to do that at any time and they have the legal obligation to schedule it). I’d tell them that they can’t video tape her without your written permission and that they do not have your permission to do so. As far as the teacher purposefully triggering a meltdown, that MAY sound worse than it is. Sometimes it’s necessary to observe and assess challenging situations in order to find out how to avoid them or help accommodate and support our kids through them. Or, it might be a really horrible thing to do if it was done just to “show” the principal what a meltdown looks like. Either way, a meeting to lay out your expectations (and have them put into her IEP — IN WRITING) is the first step.
Wright’s Law has a wonderful website with TONS of information on regulations and laws. It’s a great place to start so that you will be armed with info about your child’s rights. I’d also suggest your state’s DOE website for the same.
No matter what you do, make sure that you have a record in writing to minimize misunderstandings / dispute of facts.
I have said that I do not want her videotaped for that purpose. They are digging in their heels saying it is a necessary part of her video portfolio. And sadly, I think the teacher was just triggering it to show the principal. . . not to get help with strategies. 😦 I’ll check out both those resources.
get it in writing.
there’s only a video portfolio if you allow it.
if it’s specified in her IEP that there is to be no videotaping, guess what?
get everything in writing.
Hi Jess,
I just turned 18 and I work at a special needs gymnastics center (it’s a small business that my cousin opened up about 3 years ago). I just wanted to say that your blog helps a lot especially when it comes to understanding some of the kids that do have autism or other intellectual disabilities. I’m so glad that I came across your blog and have the opportunity to be involved in such an amazing group of people. It is such a mind opener, to both the positive and negative side of this community and it definitely gives me a much better perspective inside and outside of the gym. So thank you, for putting yourself out there to create this blog and share personal stories and experiences with this wonderful online community. Every single post warms my heart and fills me with joy.
;). Thank you 😉
Does anyone know of a career path that would end up as a Diagnosis Counselor for Autism? I’m mid-40s’, going back to school for nursing, planning on heading towards psych, and want to educate the medical establishment (either locally or more widely) re. autism/medicine, etc. to make the experience easier for all parties.
I’ve also seen SO many accounts of parents who got the “your child will never….” speech at diagnosis, and who found autistic bloggers/adults completely by accident and/or their kids made progress because they grew up – as kids do. I’d like to change that and introduce autistic-centric elements.
If anyone knows if this is already a “thing”, job/focus-wise, or if it’s not, if you have suggestions on how to blaze that path, I’d very much appreciate it.
Thanks!
Help! I recently found my son has sensory processing issues. Well ok I always knew he was, but now I have a name for it. He was a major avoided (he is starting to be a seeker) but, to stim he makes loud noises. He usually screeches. His little sister (never been evaluated) is A LOT like him. It used to be easy (haha I can’t believe I typed that) the same things would cause melt downs for both, so things to avoid was simple. My son used to script to stim. Now that he screeches… my daughter melts down, she can’t stand it. I can’t blame her. But, I can’t stop him either. I’m sure you can imagine what a hot mess my house sounds like lol. One kid screeching & another crying/screaming hysterically … help!
Sam, there’s a facebook page called “parenting your autistic child with love and acceptance” that you can post questions to. Also, Karla’s ASD page has great info and she sometimes answers questions. A nice website is autismspectrumexplained.com – I think you can post a question and she might have ideas, or know of a direction to send you to.
Hi Everyone,
I am a 20 year old woman who is noticing that I have quite a few signs of autism. I live a normal life, have a fantastic relationship with my Fiancé and attend university, but in certain areas I really struggle. I was wondering if it would be a positive thing to find out for sure or just be gentle with myself in the areas I struggle?
Thank you for your help
Nadeen
Hi Nadeen. I was diagnosed at the age of 30 and have had to sort through issues similar to this, so I can offer a few thoughts and see if they are helpful at all.
For me, the value of receiving a diagnosis was that it gave me the tools to manage issues I had previously struggled with. And the important thing is that I was better able to deal with things…like social confusion, intense anxiety…because, once diagnosed, I was able to accurately understand what was leading to the challenges. Knowing very specifically, in all of the tiny details, what was creating the issues…this helped me get some control and better manage them. Generally understanding that “i’m on the spectrum” was not enough…I needed help with all of the details and nuances that went into these struggles.
Prior to receiving a diagnosis, I tended to develop unhelpful coping strategies…strategies that worked against me and made things worse, all because I did not really understand the core nature of the challenges.
Maladaptive coping strategies (like just nodding my head during conversations, or socially isolating to avoid stress), they were all I had prior to a diagnosis and they always created more problems than they solved.
So, I would say this is just one thing to consider. It’s entirely possible to be on the spectrum, not have an official diagnosis…and just sort through these issues on your own, if you feel like this is something you can do in a positive, constructive way. But you refer to areas where you “struggle”…if it would be helpful to get an additional perspective, to find a mental health professional who could 1. confirm the diagnosis and 2. offer help in developing coping strategies that don’t work against you…then maybe it would be something to consider.
I know in my case, I was not going to get a handle on the stuff I struggle with alone, I needed that extra bit of help. But I’m sure it can be different for different people.
I would just think about the nature of the stuff that is challenging, assess whether or not they are likely to generate persistent unhappiness or maladaptive coping strategies…and go from there. And reading personal stories, asking questions like the ones you are asking, this is all the right stuff to be doing, so hopefully you can develop an instinct about what the right way forward would be. Best wishes.
Hi friends,
I am looking for some guidance. Today, a friend posted a call to action on my Facebook page in the name of Hun Joon Lee, the boy who was found on his school bus. This is an atrocious story of neglect and it is so, so sad.
In her post, my friend referred to Joon Lee as having the “mentality of a four year old”.
I did some digging and most of the articles say he was “non verbal autistic”.
I politely asked my friend to rephrase her wording to say this boy might have had the “verbal capability” of a four year old but in no way can we know what his “mentality” was.
Another commenter jumped in and they both referred to a comment by the boys’ parents that said “he had the mentality of a four year old”.
It is much too soon after this boy’s death to start this discussion I think. This boy’s parents are grieving. I left it alone.
But I would love some guidance on how to approach this in the future.
I am struggling with the thought: is it my place to assume what this boy’s “mentality” was? Of course not. None of us can know. but I just don’t think it’s okay for everyone to assume he had the mentality of a four year old.
I think it’s an opportunity to shed some light on the “mentality” of a non verbal autistic person.
But how? And when?
This poor boy deserved so much better than what he got.
Thoughts? Thank you
amanda, this would be a great question to submit to the PACLA (parenting autistic children with love and acceptance) FB page. guessing you’d get some great language there.
Thanks, Jess 🙂
Hi Jess, I enjoy your posts and read a lot about supporting our autistic children by embracing who they are, not trying to correct/change them. I’d like to understand better what supporting vs changing an autistic person looks like, especially in school. For example, sometimes the school spends lots of effort on social skills such as correcting “off putting” behaviors. Or, as another example, there are stims, is every stim “ok”? some stims can be intrusive in a mainstream education environment. Even at home I’m struggling with identifying which things I should address for my son’s sake/growth/happiness and which things to accept/support/embrace. Have you written about this idea in more detail? Or can you point me to these conversations elsewhere?
oh gosh, i’ve written a TON about it .. look for ‘respect the stim’ and “indistinguishability” as a place to start 🙂 ..
it’s not an easy line to draw, but i always start w the same question .. does what my kid is doing in order to be herself / get through the day hurting her or others?
if the answer is that her behavior is dangerous to her or others, than yes, it should be addressed. Safety is paramount. But addressed not by extinguishing it per se, but by seeking to understand what it is that the behavior is communicating and then giving her an alternative (read: safer) way to do / get what she needs.
if it’s not, then the next question is what about her behavior is problematic?
if the answer is that it singles her out or identifies her as different, my answer is generally, “so what?”
she is different. it is what it is. trying to train her to look like everyone else is, as i’ve said a thousand times in myriad ways here, a horrendous and dangerous goal.
if the answer is that it makes other people uncomfortable, my answer is, ‘if NOT doing it would make HER uncomfortable, then how do we find a balance / make others more sensitive / accepting / create some middle ground?
As for talking about ‘off-putting’ behaviors, the world is what it is, and while we work to change perception and create acceptance, I think it’s only fair that our kids have an understanding of what people will tend to expect of them and the reception that they’ll likely get to various behaviors. Essentially, basic social skills are an onramp to opportunity / connection for our kids and the more self awareness / understanding / tools we can give them, the more we empower them to participate in a society that isn’t remotely ready to meet them halfway. (damn it)
Thank you, Jess. That’s just what I needed, especially in helping him with social awareness and others’ perception/reception.
Regarding efforts to make others more sensitive/accepting/create some middle ground, our middle school is willing to speak to my son’s classmates about autism. This is the second year of middle school and the students are not responding to him in positive ways, he is not making friends. His goal for the year, which he discussed with his teachers before the start included “make a least one friend.” He is fully included in general ed classes and could really benefit from those around him being more sensitive and accepting, as it is likely not clear to many of them that he is autistic. The autism specialist would talk to the class while he is out on a planned activity. I’m not sure how I feel about this. He does know that he is autistic, but often when it comes up he will insist that he is not – he doesn’t fully embrace/own it. This means he would not be part of the discussion about being autistic (and he may even disrupt it). However, having a discussion about him, without him, concerns me as well. If he is not ready to discuss this, do we wait? and then lose more opportunity to find that balance?
I am so glad I discovered A Diary of a Mom. I have a 26 year old daughter with Down syndrome, so parts of my path have been different, but I so appreciate what I read, and Jess, you have raised my awareness so I now monitor my own posts more carefully. Thank you!
I have a question that I hope isn’t out of bounds – the last thing I want is to disrespect or abuse this space! I’m trying to help my 28 year old daughter, who recently moved to the Hagerstown/Frederick MD area from San Francisco (her hometown). She has an art degree and has worked the past couple years as a Special Ed paraprofessional, a counselor at a camp for autistic kids and a respite worker for a family with autistic twins (she did them all at the same time, trying to make enough to rent an apartment in SF. Hence the move). She has glowing reviews and references. Anyway, she has been trying to find work in the Special Ed field there, with no luck. I’ve been trying to let her find her own way, but I can tell that all the “position filled” emails are getting her down, and she doesn’t have a local network there to turn to. I wonder if anyone has any places to suggest.
Thanks-
Connie
Trying to think of anyone I know in that area. Will keep thinking!
If she is willing to travel to Loudoun County, VA (abut 30 minutes south), I know that our school system still has special education positions to fill. We started the school year with 25 open positions in special education alone.
Thanks Jodi,
I believe she’s applied online for some positions in Loudon County. I don’t know if she’s made it as far as an interview. Do you know if it helps for applicants to drop by and meet the principal? In San Francisco, she went around and introduced herself at schools, and was able to get in the sub pool, which turned into a position, and it helped that we knew the system. (She ended up working at her elementary school alongside her former teachers – an odd experience!)
Thanks Jess. I believe putting it out into the universe helps “stir the pot”, so to speak, perhaps giving serendipity something to catch hold of.
Thank you, Patricia (and M and Jess, because one thank you is not enough for either of you)… your comment comes at a good time (or at least, me seeing it comes at a good time)…it’s been a long day, put it that way.
Right now I’ve got a referral for a starting point psychiatrist who was recommended to me very thoughtfully and purposefully by the one who did my assessment/diagnosis over the past month, so I will keep trying to get through there and make an appointment. If that doesn’t work out or if they don’t take my insurance, or if anything else happens then I will absolutely do that as Plan B. I appreciate the suggestion, and all of your kind words.
It’s sadly very accurate.. I tried expressing myself this morning to a certain extent and it blew up in my face, then later I got a text which I opened with some hope, but it said “the things you said earlier were really hurtful” etc… it can never be about me, but then again it’s apparently ALWAYS all about me.. but anyway I don’t want to keep on toxifying up this place. I know that I probably expressed myself in ways that made me come across different than I meant, because it happens ALL the time and is one of the things I really need to get help with.
I know there’s also other work to be done, and the nature of it, but it’s a struggle more some days than others for me to let the BS slide off my back and keep trudging along. I have a 12 year old daughter who is dealing with social anxiety and depression now as well, so it’s just a very trying time. Other stuff as well with the older kids but don’t want to spew it all out here, like I said…
I will find someone (a psychiatrist) who can deal with me enough to listen to me… if such a person exists. apparently I’m quite a handful to deal with, even for doctors. but I wasn’t about to use any coping mechanisms during my assessment appointments, I was 100% real and me and just happened to have a bit of PMS depression to go along with it (sorry but it helps give insight into the mood of one of the appointments, which were once a week over a 3 week period)… and just was myself with him so he could see what it is that I’m dealing with, being me.
Can’t wait to get his report in the mail. I am interested to see if there’s anything there that I’m not aware of being an issue. Its hard to see me for the trees. Or something. That’s why I started off taking psychology in college, but computers was too strong a pull… anyway. thanks again for the reply and the ears and shoulders and stuff (everyone). Much appreciated ❤
(OOPS! replying to my own post to ask Jess to magically move my above longer post so that it appears as a reply to the actual conversation that it is part of 🙂 thanks.)
I’ve been sent this really horrible Facebook page that I would love to see more people reporting so we can get it taken off FB. It is the worst kind of hate I’ve ever seen and I hope that others will rally as well to get it removed. https://m.facebook.com/autismkills
It makes me sick and I’m sure it will make you sick as well.
It appears to be down.
Hi Jess!
I enjoy your blog very much! My five year old son was diagnosed 2/19/15.
I realize now that the best way to make respectful choices regarding C is to connect with autistic adults.
I’m unsure how to begin. How do I connect to adults in the community?
Thank you.
Absolutely! Reading their blogs and following their Facebook pages are a great place to start. On my blog roll (to the right on a desktop, below on mobil) is a section called “vital perspective from autistic adults.” Many of them have interactive Facebook pages as well. A couple of favorites pages:
Invisible Strings
Emma Pretzel
Parenting Autistic Children with Love and Respect (they take questions!)
Karla’s ASD page
There are many more, but those are a really good start.
Jess,
I just wanted to thank you for teaching us all to find our voice. I realize we are very fortunate that our daughter started pretty functional and then just bloomed until most people meeting her wouldn’t be able to tell, they might think her quirky.
We are presently in patient for a 48 hour eeg. The epilotologist is a neurologist, but his focus is all on seizures.
He quipped, after an exam that she was the most functioning autistic person be ever met.
I said “It’s not like they come in a box. We and she have worked very hard to get here, not everyone is that fortunate.”
He backpedaled. 🙂
Thanks for being a voice for “Brooke” and encouraging us to be our daughter’s voice.
Hi Jess,
My son’s school says he is doing great! He has an IEP, and they really are a good school. But they aren’t doing everything in the IEP. He has breaks in his IEP, but they said there are enough breaks in the day for all students.
My son was doing good with the transition to Kindergarden for the first month. Now, he has been having awful meltdowns and bad threats to me. The last time he did threats, it was last yr when he was being over whelmed by the curriculum. Now, I am seeing the same signs at 2 months into school.
His private behavior therapist thinks a sensory diet or more breaks could help. The school tells me he is happy there and sees no issue. I tried telling the special Ed teacher that there is signs to me that something should be done. I keep telling them that behavior is communication. (He is in a gen Ed class with services) He also needs oral input and they still aren’t offering that either. I don’t know how to get through to them
What should I do?
If they are not complying with the IEP then they are violating the law and, along with it, your son’s right to FAPE, a free and appropriate education, under IDEA, the individuals with disabilities education act. Tell them that. And, one by one, take it up the line (telling each person that if you don’t get results, you’re going higher so that they have the chance to rectify it first) from head of sped to the principal to the superintendent to the DOE (dept of education). If you can afford an advocate (typically far less expensive than an attorney) they can be extremely helpful in guiding you through the process. Administrations tend to screw around a lot less once it’s apparent that you know your child’s rights under the law. Wright’s Law is a wonderful free resource online. Hope that helps.
When I mentioned the breaks, she said that he is supposed to be in the least restrictive environment and that’s why they don’t want to pull out for breaks. Can they use the fact that the class has rest time, brain break and snack time as his breaks? Because he does have frequent breaks on his IEP.
I wish I could afford an advocate. But that’s not an option for me. I am very well versed but it seems they are fighting for the weirdest stuff!
I requested for him to get assessed through the school system for adapted PE, almost 2 months ago. They put in for an observation but for an actual eval. And it still hasn’t happened. I called and told them that I wanted a formal eval! Now they are going to call an IEP meeting in 3 weeks to get the ball rolling. I just don’t know how to get them to understand that there is something going on.
thanks for your advice. We have parent teacher conferences next week. I guess I will see how things play out and give concerns then.
Put everything in writing, especially any requests for evals etc because it starts the clock ticking. The LRE is the LRE in which he can learn. If they didn’t think that the breaks were consistent with LRE then they shouldn’t have put them in the IEP, but since they are in the legal document that they agreed to and signed, they are responsible for carrying them out.
Also, check your state’s DOE website for resources. They may have someone you can talk to. Another option is bringing another sped parent or other individual who is well versed along. It can help to have an objective observer to help.
The bad part is that I did put it in writing. I sent emails! And when I sent the first asking for the adapted PE eval, they put in for informal observation instead of eval. I brought to their attention that it’s been almost 60 days and they haven’t done the testing. So, now she is going to have a meeting to start the process and says they will have 60 more days.
SEEKING ADVICE:
(Sorry for the alias. This involves a situation at my job, so I feel the need to be anonymous.)
I’m struggling to strike a balance between 2 roles:
– I’m the parent of an autistic 4th grader, and I feel a responsibility to the wider autistic community to not only advocate for my own son, but to do what I can to help improve the way neurodiverse people of any age are viewed and treated.
– I recently became an employee at my son’s elementary school. I’m employed in the support staff. I’m in a position unrelated to the school’s IEP-type programs and services but I’m now in a position to observe first-hand how difficult situations involving a neurodiverse student are being handled, and I am dismayed.
My dilemma:
How can I step up to try to protect this child’s wellbeing in a way that doesn’t get me fired from the position that enabled me to see this problem in the first place? I’m not his parent, I’m not on his IEP team nor am I in a position to be, I’m not viewed as someone with “training” despite 10 years of experience with my own autistic child. But I know without question that the way they are responding to his episodes of chaos are making those episodes worse, which makes him suffer needlessly, and makes them struggle needlessly, and is likely to eventually result in him being put out of the public school program and into a non-public school setting (because they feel they can’t handle him and there’s no other options left). Perhaps that setting would be much better for him, but the underlying problem — the staff using methods that don’t help a neurologically vulnerable student to calm, and to feel safe, accepted, and competent — would persist and reoccur with other students.
My own autistic son has experienced distressed behaviors, meltdowns, and moments of lashing out, and after I spent years responding in the ways our various professionals told me to, but which seemed to escalate and perpetuate the distress and lashing out, I finally found better knowledge and better ways of doing things. The writings of Dr. Ross Greene, Dr. Bo Hejlskov Elven, Jess at Diary of a Mom, the Autism Discussion Page on Facebook, and a great many writers who are actually autistic, taught me a very different mindset and much more compassionate and effective approaches. But that’s not the common way of doing things, and that’s not the way my school is doing things.
I directly intervened today because I couldn’t bear to watch this child suffer through another needlessly long meltdown and I was unable to find the principal. I stepped in, and the boy was immediately able to start to calm his system down, and eventually he returned calmly to class. Me intervening is not good from the school’s perspective, but I couldn’t just watch them make him suffer. I’ve opened up discussion with the principal and the assistant principal, and I plan to talk with the school psychologist, because I want the school to adopt better methods for the sake of all the students, but I don’t know if this is a case of trying to turn an ocean liner, and my employment is considered temporary/at-will until I’ve been there a full year (so I don’t think my union could protect me from dismissal if me making waves about the behavioral strategies gets me the boot).
I can’t directly intervene again, that would be unacceptable to them, which is understandable. I have to do something to encourage them to change their methods overall, not just with this child, or I’ll be stuck sitting by helplessly while kids meltdown and staff makes it worse. And being stuck in that particular way starts to trigger symptoms of panic attacks for me (literally).
Do you have any advice for how I can take action in a way that would improve things for this child and others like him, without putting my job at risk? How much can I push as a parent and advocate, while also being an employee?
Any advice or feedback is much appreciated. Truly.
if you want the full details, so you can give me feedback on whether I was out of line to intervene:
I’ve spent my first 5 weeks on the job witnessing this young boy escalate into fight or flight mode day after day, and observing the words and actions of the staff have the effect of escalating or perpetuate it. The adults are greatly disturbed by the outward storm, which can tear apart everything in his path. I see the outward storm as simply a manifestation of what he’s experiencing inside, and I feel such empathy for him. My son’s experience (and my own experience of panic attacks) has taught me how terribly difficult and draining and miserable it is to go through meltdowns, to go through that chaos. I know this child is suffering in those experiences, and whatever unwanted behaviors he may engage in prior to escalating seem irrelevant to me. Once you tip over into the chaos/meltdown, all that matters is finding a way back to safety, to calm, to trust. I finally learned that.
Today, it was happening yet again. I don’t know what led up to it, but eventually, I could hear that the young boy had left his classroom and was in the hallway/common area with 2 aides (1 of whom used to be an aide in my son’s class. They later split the special day class program into 1 class for K-2, and one for 3-5, and this young boy is in the K-2 class with a different teacher than my son has had.) I could hear his non-verbal vocalizations, clearly communicating distress, and escalating. I could hear them stating demands, and getting louder. Then I hear the main aide getting upset, asking him if he’s going to hit her, asking more loudly when he continues to vocalize and doesn’t answer her. I hear it getting worse and worse. I look down the hall. He’s hitting out and screaming non-verbally, and the aides are keeping him from having a stuffed toy he is clearly desperate for. They keep peppering him with demands in loud tones. He keeps screaming and hitting out, trying to get the toy. I felt like I had to do something and not just stuff my instincts and mind my own business. I rushed across campus to the office. The office manager said the principal wasn’t there and wasn’t available. I told her what was happening, and she came back with me. (They had called her in for extra support during several previous situations with this child.)
We found the situation in full-tilt chaos in a lobby-like area of the building (surrounded by classrooms): the boy screaming in distress and hitting out, trying to get to the stuffed toy that one aid was holding up in the air away from him (Stop that! You’re taunting him with it, can’t you see that?!), that aide making loud statements at him about hitting her and demanding that he apologize before he can have the toy (Wait, is the goal here to help him calm down and return to learning, or is it about ego and power?), both aides telling him loudly to “use his words” (I hate that! He’s in distress! He might not have access to his words!).
The office manager hung back. I couldn’t. I asked if that was an item that comforted him. The aide holding in the air was clearly in fight-or-flight herself, shouting that he couldn’t have it until he apologized for hitting her. I said he clearly needs it to be able to calm down, that they were making it worse. She became more upset with me (for interfering), tossed the toy at me and stormed off, saying that if somebody else wanted to do her job, then fine.
I handed the toy right to him and he collapsed onto the ground, curled up hugging it close, rocking a little, out of breath and sweating. His distressed cries ceased immediately and he just hugged the toy, curled up like in “child’s pose, ” facing the floor. I had dropped to the floor with him. I softly said, “it’s ok now, you’re safe, we can be safe, you don’t have to hit, we can be safe.” I tentatively put my hand on his back, testing whether he might need someone close or need some space, and he seemed ok with it, so I stayed with him, my hand softly on his back, saying nothing more to him and just letting him calm down and recover from the battle he’d just been through. I talked a bit with the aide who stayed, explaining that my son is autistic, I’ve been through these situations for years, the boy clearly needed his toy before he could calm down. His teacher (from the behavior support program) finally came (perhaps she was at lunch). I was still on the floor with him, he had quieted down but was still curled up hugging the toy. My frustration flared when I saw her, and I said, “The way they’re handling him is making it worse.” I know that was inappropriate to say in front of him, and I regret it. That was Mama Bear, advocating for a child, and not remembering to be aware of the teacher’s position. The teacher asked the young boy if he was ready to go back to class now, and I asked him if he felt calm now and ready. He was, and went peacefully to class.
I talked very quickly with the principal on her way out. She agreed that they were handling it badly but doesn’t want me interfering. I spoke with her as a parent of an IEP student, concerned about the lack of better methods. She insisted those methods wouldn’t be used on my son, that he’s in a different situation. (But it’s the same program, just a different set of staff for the younger ages.) I felt that her assurance about my son was rather beside the point. All students deserve better treatment than that. I suggested they learn about low-arousal methods so they didn’t continue to escalate/prolong his chaos/meltdowns, and I offered to bring her my materials. She seemed alternately open to new information and defensive that I might think she might not know what she’s doing. (I know they’re all good people trying their best. But they clearly need better tools to work with and different framework for understanding what they are dealing with.)
I tried to smooth things over with the aide who’d been activated and stormed off, but she was still riled up and just got defensive, insisting that she knows what she’s doing, that he was about to apologize, that she’s been doing this 15 years and I don’t know what it’s like, etc. I talked at length with the assistant principal, who really seemed to understand all points of view, and said she understood why I’d felt compelled to intervene because she agreed they weren’t handling it appropriately, but that I must not intervene again unless someone is in imminent danger of physical injury. She seemed to encourage me to advocate for better methods, and suggested I talk with the psychologist. I plan to.
Can I be a strong advocate and also keep my standing in my job? (It would feel wrong not to try to work for change. As a parent who thought this was a great program, it alarms me that I would not have known about this approach if I had not hired on at the school. To not press the school to change to better methods would seem to be a betrayal of other parents with kids who have similar challenges.) Can I stay in a job that exposes me to witnessing some inept treatment of disabled students while leaving me no direction action I can take to protect a student’s well-being, without feeling a rising panic attack and having to basically hide until it passes?
Any advice or feedback is much appreciated!
Oh my goodness, that was hard to read. I can’t even give you a logical response until I think with less emotion. Unfortunately, I think those situations happen every single day, all over the country, in every type of school setting. I have met too many people that don’t have a clue how to handle children in these circumstance. They haven’t had the paradigm shift in their minds that they are taking the wrong approach. They need to see with new eyes.
@ Lisa Shuey — I appreciate your comment. It really is a paradigm shift to go from focusing on forcing compliance to fostering a sense of safety and calm and making that the highest priority. “They need to see with new eyes.” YES, you nailed it! That’s it in a nutshell!
I hope you stay. It sounds like they need to hear your. It sounds like the principal is trying to tow the line of being open to your ideas, and respectful of his teachers and aides by not looking like he’s letting you take over. Keep talking to the principal and the psychologist. Nothing can change overnight and nothing will change if you don’t try.
@ Karen — I certainly plan on staying, and trying to encourage change (carefully). Thanks for your comment.
I was wondering if anyone has used crossinology as a type of therapy to help with ASD? Any feedback would be much appreciate. Thank you!
Respectfully, I just looked it up and it reeks of bunk / snake oil / costly and destructive woo.
Hi AJ. What are you looking for help with, specifically? Jess’s readers may have ideas/experiences they can share that might be helpful. Also try searching her blog with key-words, and check out the other blogs listed on the site – you can search them as well, and get autistic input re. the challenges you need help with.
Hello, my niece is on the autism spectrum. But her parents don’t know. They refuse to have her tested or get her any support services. She’s 6 years old, and has been displaying all the classic signs since she was about 18 months old. She is mainstream kindergarten (though not developmentally on the same level as her classmates), I hope a teacher picks up on her challenges, and gets her the support she could really benefit from. Her mom and I are related by marriage not blood, and not super close, so I can’t really tell her what I think is going on with the kid. How did you realize your kid might be on the spectrum? How do you help someone living in denial?
Thanks.
Hi there. My 7 year old son with autism is in the typical classroom 70% of the day. He is doing ok, but there have been a couple incidents where he hit another student. He is usually not aggressive or violent. Both times were when the other student was trying to help or mother him. He was in line for the gym (he has sensory issues in there with the echoes and acoustics) so he was already anxious, and could not handle being smothered. His teachers used to let him rip paper before going to stressful places/transitions. Ripping paper calms him and helps him. But, the school psychologist decided that it was not ok anymore. Does anyone have any advice or tips on how to help him? Any fidgets that might simulate the ripping paper experience? I gave the teachers some Thera putty as a replacement for the paper. I appreciate any and all help. Thank you.
what about small pieces of fabric or ribbon? Or just tell the school psychologist that he needs the paper.
At my son’s school district, and even the non-school aftercare, there is a rule: “Hands, feet, objects to yourself”. Of course, your son shouldn’t hit – BUT, it’s not the other student’s responsibility, and if the student was crowding your child, THEY need to be told what’s ok and what’s not as well. It’s not just on your child to follow rules.
Re. the paper – Is there more to it than the psych deciding “it’s not OK anymore.”? Unless your son was making a huge mess, or destroying paper that was NOT for him to tear, request the paper be re-implemented. If the psych has an actual, GOOD, logical reason other than “it’s not OK anymore”, let’s hear it. But if that’s the ONLY reason, it’s not good enough. It’s a coping mechanism that hurts no one – again, if he’s not damaging anything or causing an inconvenient mess. And perhaps there should be an empty box by his chair or wherever he is to rip the paper so it’s NOT making a mess.
If you can get it into his IEP that he can do paper or other stress management that is not damaging or dangerous, do it.
Thank you both for your replies. I spoke with his teachers and they said that they would take the other children (those that are his friends) aside and talk with them about giving him space. I told the teacher that he knows to tell people that he needs a break. She said she would reinforce this and tell the other students to respect his wishes.
His school OT said that she has tried fabric and ribbons, but he doesn’t take to them. They are planning to let him use the theraputty before the transitions and while he is in line. I am hoping that this helps. I told the teacher that if it doesn’t work, he will need to go back to the paper.
The school psychologist was/is against ripping paper because she fears that he will rip his school work or other things that he should not.
I’m glad the school is working with you. Re. the “ripping the wrong paper” thing, is he able to tell the difference between different types/colors, etc. of paper? Does he have a “favorite” paper to tear? I would say the psychologist needs to “presume competence” here, and to support that, have a box of “stress paper” that’s JUST for him to tear. If it doesn’t come from the box, it doesn’t get torn. If he’s heading somewhere outside the classroom, put his “stress paper” in a “stress paper folder” and he can tear only what comes out of that folder. He’s 7, and most kids at school HAVE different colored folders for different things. He might even be thrilled to have a special box/folder that he can turn to without hesitation when he’s stressed. Heck, if other teachers save their scrap, he may end up with more than he needs.
Thanks very much. Yes, he definitely has preferences and I think knows the difference. He doesn’t try to tear pages from books. He particularly loves newspaper, especially the ads, and magazines. Thanks for such great ideas. I will talk to his teacher and see if we can put isome of his favorite papers in a stress box or one of his folders. 🙂
I’m thinking maybe print out or forward some of Jess’s blog posts regarding “presuming competence” to the psychologist. It can be ‘out of the box’ thinking for some people.
Hello, I could use some advice. I work at a YMCA and meet so many wonderful people. There is a new member, a dad, who has been coming in with his boys. He seems somewhat overwhelmed and tired but keeps coming to stay healthy with his 2 boys, age 7 and 5. The last few days, the younger son keeps running into my office, near our lobby, and just starts looking around. I enjoy the visits but noticed right away that me saying hi wasn’t what he was looking for. I tried giving him stickers I keep in my desk, most kids thst visit love this, but no, not what he’s looking for. Usually he runs out or dad grabs him and runs out apologizing. Today was a busy day at the Y and somehow the sweet little boy made his way through the crowd to my office. I said hi and it was nice to see him again, showed him some cool stuff I had like a football and balloons from our event today, but he just stared over my shoulder. Dad finally made it in and apologized as usual. But today I said, wait! What’s his name? Ben he said, he is autistic, I’m sorry he keeps interrupting you. I said no way, I love visits, can you tell me what he likes so I can make him enjoy the visits too? He smiled and said he was in a rush and happy new year. Sooo…the advice I’m looking for is any suggestions to make the visits what Ben wants or needs or what I xan say to dad to be supportive while at the Y? Found out his name today, that’s my small start. Appreciate any feedback and advice. Thank you and happy new year.
keep being open and welcoming. try to find the dad in a quiet moment and tell him that you really love when ben comes to say hi. ask him again, when he’s not rushed, if there’s something that he thinks he might be looking for, or if there’s something that you could keep on hand for him.
perhaps he’s looking for someone who had the office before you? maybe the furniture is different and he’s processing that? maybe it’s something he saw once from outside. perhaps he just likes the escape to a quiet space with a friendly face.
i’d try putting different items out where he can see them and see what he responds to. if there’s something he seems to like, keep it out the next time. tell him he’s welcome to look around and that it’s okay to touch things. but also know that it really might not be a thing at all that he seeks, but rather the comfort of a safe space, which you clearly provide for him with your generous and welcoming presence. 🙂
I was thinking what Jess said – it may not be a thing that’s he looking for, but more a quiet respite place away from the busy noises and people and things like that. He may be seeking out quiet and calm and a welcoming face 🙂
Maybe you could hand the dad a note card or something on his way out some day, asking him to write down some things about his son that might help figure out how to make their time there a better experience. When he’s home at night, he may have time to think about it. And, as a parent, I know that if someone asked me for some thoughts on how to connect with my kids, I’d be really grateful.
How do you know a charity is actually helpful. Jess speaking against Autism speaks makes me want to double check before I show my support to some. I was looking at buying a product and a portion of the proceeds goes to The Autism Society of Canada, or the Autism Society of America if you buy from the states. I wanted to run a fundraiser with my little brother’s autism class but I guess I just wanted to ask if anyone’s heard anything good or bad about them
the questions i ask are Do they have autistic people in meaningful leadership roles? and Are the resources going back into the community to make life better for autistic people? I don’t know anything about the ASC specifically.
Hi all, I have a question about how you handle substitute teachers in your child’s IEP. My son is in third grade and really needs consistency. We are only in our first year of diagnosis, so our first year of having a plan in place. Last week we had the first occasion of his teacher and his assistant teacher both out for two days in a row and he could not go in the room. I had him go to the other third grade class. Evidently that was not ok with his teacher, and we have a meeting next week to review our goals. He has extreme anxiety. He’s in weekly therapy, still working so hard on social concerns. I really feel like it adds unnecessary stress to force him to face a substitute. The teacher thinks “he can do it” while I think the mental price to pay is too much.
How do you handle it with your elementary kids? Thank you so much for your thoughts.
We have it in our son’s IEP that whenever possible, we are notified of any absences for either his classroom teacher or his aide. It can be via email if known the day before or even via text or phone call that morning. We also have a set social story that he has for when there’s a sub that we review with him when we know. That way, he doesn’t walk in to school and is surprised.
We have also set up a “safe person” at school who is not his teacher or aide where he can go if he’s upset or needs a place to chill. So if there is an unexpected absence, he always has that person to go to to help him through.
Hi, quick question: I believe you posted a link to a blog with a great critique of NeuroTribes and In a Different Key; it referenced John Elder Robison’s review quite a bit. Do you recall it and could you repost the link? Thanks!
http://www.thinkingautismguide.com/2016/01/in-different-key-one-deeply-flawed.html?m=1
Tough time in 6th grade with “friends” – I’m looking for a social story of some type to help my son and his school mates, to better understand echolalia and more specifically “repetitive echolalia” my son does it frequently – especially “funny, twelve year old goofyness, his “friends” used to not be bothered by it, but it’s clear to me, it’s becoming an issue – (he’s hurting, because what was once his friend, now is mean and telling him to go away, I suspect sensory issue with other kid) – I’ve reached out to school/teachers for social story, but I figure I’d give a shot here with the EXPERTS. Any and all advice much appreciated.
I’m sorry to hear. I know a friend was trying to get a Facebook group started called Social Stories to Share. She didn’t get much traction, but it’s worth going in to ask there. Otherwise, I’d highly recommend just writing it. Nothing will be as customized to him as one including the names and particular scripts he does, etc. they don’t have to be perfect, just meaningful to him 😉
Thanks Jess, ton harder than it seems you know, once done will share.
I have an 8 y.o. autistic son. While he seems to enjoy playing sports and we want to encourage him being active, he says he hates when the coaches yell (from across the field or court). And I know the speed of games is physically and mentally a challenge. Ideas on other activities to try? Do we keep at it? A different type of league? We feel like he could get some long term gains (teamwork, sportsmanship) but am not sure how hard to push. Thanks!
Do you have anything like a challenger league or special Olympics near you? Definitely worth googling / asking around to see what’s available in your area.
This page doesn’t look too active anymore but, I have a question I hope someone could help with. I just had my first female exam a few months ago. I told the lady when I made the appointment that I never had sex and I don’t like to be touched. It has to be very specific and go slow and I told the doctor as well. They all just respond like its routine anxiety of having a first Pap smear. I didn’t know a breast exam was part of it and I can’t handle that at all either. I freaked out and screamed and cried at the Pap smear they didn’t know what to do.
She gave me a prescription for medication to take to be calmer next time because she might not have gotten a sample. A few days later she said she did and I didn’t have to come back for a year. I had nightmares of being raped for a couple months after and thought about it a lot throughout the day. I was very traumatized by the exam but, I know the exam wasn’t a rape but, it hurt very bad and she was rushing and not listening to me.
Anyways, I cannot handle that exam and I was wondering if anybody has had experience of being able to be sedated. What do other people do that are severely sensitive to others touching them and this kind of exam in general? Also, today I had a different appointment that needed to do a pelvic exam but, no scraping but, I said no not this time so it will be next time and then that will be near the time I’m supposed to have another Pap smear and I just want them to at the same time while I’m sedated but, they won’t do it at the same time because they’re different doctors.
Also, I’m supposed to have a mammagram this year because I turned 40. I want to be sedated for that too. Is anyone able to get sedated for these tests? Jess, I was wondering if people don’t really see this question on here if you could ask it for me on your DOAM FB anonymously? This got a lot longer than I meant so I break it into chunks.
Eliana,
My thought after reading this is that if you can find the right Doctor, there’s a good likelihood that you won’t need sedation. In this post, I talk about the dentist’s office that we use. Previously, Brooke had to be sedated to get any real dental work done. After finding them, she was able to get a tooth pulled in the office.
https://adiaryofamom.com/2015/03/20/care-and-handling/
It’s all about moving slowly and creating trust – talking through procedures, letting you know what to expect, and, above all, knowing that you have the power to tell them to stop if necessary and know that they will listen.
I have a friend who is in her early 20s who writes herself social stories for medical visits and procedures. I would highly recommend doing that if you think it might help to know what’s going to happen. A good doctor (or their nurse) will be willing to talk it through with you ahead of time and let you know the steps so that you can prepare yourself.
They should also know about your previous experience so that they can understand that it goes beyond being ‘nervous’ for you.
As for the mammogram, I don’t think you could do that sedated as you need to stand up for it. Perhaps they could do an MRI (which is more accurate anyway) instead. That you could be sedated for.
I hope that’s helpful.
Good luck!
Thanks Jess, for the response. I appreciate it and I agree with you. Unfortunately, I have government insurance and I can’t really find doctors who are very patient. I’m having to change to y fourth PCP right now because they’re all so dismissive and impatient. I can do a social story but, if the doctor is impatient and rushing my body
can’t process all he touching no matter how much I’m trying I know what to expect. If I have sedation I don’t have to worry about them being gentle or rushing. I don’t know how to find a good doctor. I had a case manager that was mostly helpful for somethings and she found me the last Doctor that she’d heard was a good doctor but the doctor doesn’t want to see me anymore because she said she’s too impatient and she definitely was. I was trying to give her more of a chance. The case managers last day was last Monday though so now I have to wait to get a new one also.
I hope I’ll be able to get the MRI for the breast exam. That would be the best option. Thanks for the suggestions!
I wanted to weigh in on this a bit. I have always found any intrusive exam very, very violating. I want you to know that others do really get that. One thing that helps me is a doctor who explains everything that is going to happen BEFORE it happens and an honest description of what it will feel like. I have actually found that some mail doctors have been much more sensitive and compassionate than female doctors. That hasn’t always been the case, but, there is usually a difference. Also, I am not trying to be nosy, but I have a friend who has never been sexually active, and it is completely unnecessary to have a PAP smear if you have never had intercourse. Because she was a virgin, they used a shortened equipment for the general exam, as to violate her more than necessary. My 18 year old ASD daughter had to have an intrusive exam for other reasons, and she absolutely hates touch. We repeatedly discussed the reasons for the exam, and I stayed by her side throughout. Do you have a trusted support person to help distract you and be with you? That helped her a great deal. As for mammograms, since you cannot be fully sedated, is it possible for you to have Valium? That always puts in me in a state of complete, “I don’t care what you do.” Best of luck to you!
Please excuse all the crazy typos in my message, “male” not “mail.” And “as to NOT violate my friend.” I should have checked more closely!!
Jess, I first and foremost want to say your blog and way with words is absolutely amazing. I have a question. A friend of mine just found out today that one of her 18 month old twins has austim. She is freaking out and blaming herself. Any advice to help her with this.
Thanks in advance
I saw your post about moving. I know how hard a challenge that can be so I thought to make a little suggestion that helped me and mine. Get a fairy garden.
Let Brooke (and Katie if she is so inclined) to build up a little place of magic that she can keep in her corner of your new place. It can be as big, small, simple, or fancy as she so chooses (and on the cheep if she feels inclined to make the fairy dwellings, furniture, etc). Then when it comes time to move again, you can use it as a tool. Ask her where she wants to put it in the new house? Does she want to make it bigger? More elaborate?
There are some great ideas on pinterest about portable fairy gardens or succulent gardens. It was an idea that I had that could help distract her from the stress of moving a la you move the house she moves the fairies. Hope this helps but more so I hope you know that while your girls are radiant, it’s only because you showed them how to do it.
I have a question on behalf of a friend in Westchester County NY. Does anyone have an idea of a good resource for getting information for an adult on the spectrum? My friend’s sister is in her 50s, and the family has been kind of head in the sand about what will happen when their parents die. Most of the resources I know of are for families with young children, plus I’m in CA so know nothing about NY.
Thanks!
I am just wondering if anyone knows the best resource or what to do in case of an accident or other situation with first responders or police. My son with autism is 8, he is verbal, but has a speech delay. He might not respond if he is stressed or not familiar with the person. He also might not respond appropriately, especially to instructions or if I am hurt. I am concerned if something happens like a car accident, and police or fire try to help him he might become agitated. I don’t want them to hurt him or misunderstand. I have looked on Autism websites and on my local police and fire Websites. I don’t know who to talk to. I don’t know if I should get a sticker for the back of our cars, I don’t exactly want to advertise that he has a disability to child predators. But, I want first responders to be aware. So I would appreciate any advise. Thanks!
In my state (ny) there is the yellow dot program. You put the yellow dot on the window & responders look in your glovebox for an info card.
I have also seen different sleeves that you put on the seatbelt. They can have name or other info on the outside, or just a medical symbol, then info inside. It can be as simple as an inexpensive Velcro wallet or look on etsy and I’ve seen done nice ones there. This way first responders will look at that info when dealing with the person in that seat.
Hope it helps!
Sarah, I highly recommend setting up a time to visit your local police / fire stations. It can be a great experience for our kids, providing some familiarity with first responders and their equipment, and it also allows them to get to know our kids, and be aware of who they are and what their needs may be in an emergency.
Has anyone has any good experience getting non public placement in Boston?? How about New London, CT?? Lastly, Juneau, AK?? Thank you!!!
My son is currently attended ABA therapy 4 days a week for 3 hours each. He also gets 30 minutes of speech twice a week and 45 minutes of OT twice a week.
He’s almost 4 and has exploded developmentally since he started ABA. We’ve loved the office he attends and everyone has been great for the two years he’s been doing speech and OT.
We were informed recently that he will be changing BCBAs. About three weeks ago his current therapist asked if we could move him to their morning session because another child that is attended the morning session needs to move to the afternoon. We couldn’t do that because of our schedules so we declined.
Everything seemed fine then we were told he now must get a new therapist because his current one will no longer be available.
The new therapist has not finished her certification and will be unavailable for the first hour and fifteen minutes twice a week due to a class.
At first we were told it was a 6 week class. Now we’ve being told the class starts at the end of August and goes until December.
Everyone I try to talk to basically acts like its no big deal that he’s losing time.
The way their schedule works the first hour is unstructured social time. The second hour is one on one work with the therapists. The third hour is structured social time.
The office manager who makes the schedules keeps telling me it’s fine because he’s only losing the unstructured time and will still be getting the intensive parts of the therapy but to me why would they have that time if it wasn’t important.
My question for everyone is how important would you consider and hour of unstructured play for your child. I’m being told there is nothing I can do about it but I will keep pushing if necessary or should I just bite the bullet and deal with it until December?
It feels like his current BCBA chose to take on the other child and my son was tossed aside. I am having trouble telling if this is all reasonable on their part or if it’s grossly unfair to my son. I just had a baby two months ago and these fresh baby hormones are intense.
Hi everyone,
My DS is 5 years old. His deep and abiding love has always been the alphabet, which he has known, upper and lower case since shortly before he was 2 years old. He has an autism diagnosis. His verbal skills are emerging, he says “I want” statements and his receptive language is good.
My question is: how do you teach your child to read? I have 2 NT kids who are older and the way that worked for them is not the way that will work for him. Do you have any good techniques / systems / books that have worked? At school, they have been working on identifying the first letter of a word by showing him a picture and then having him put a clothespin on the letter that the picture begins with. They sometimes say the word that’s represented by the picture but most of the time they don’t and he gets it right most of the time so I think that he’s ready for us to start working on it more.
We are open to any suggestions! Thanks.
Does anyone have suggestions on how to prepare a minimally verbal autistic 4 year old for an eye exam w/pupil dilation? Actually, also how to prepare the DOCTOR’s office for the exam so as to not traumatize the child? Having to “hold her down” was mentioned and the parent was freaked by this. I KNOW It can be avoided with planning, but I don’t have personal experience.
A teacher at my son’s school asked me about this and I’m trying to gather info for her. Thanks!
Any thoughts on Direct Instruction for a 12yo with ASD plus a diagnosed LD in language? Can any adults on the spectrum offer an opinion? I’m considering it for my son as we need to make a school change, but I’m worried that it’s just intense ABA worded differently. 😉
(I know about Engelmann, the “evidence”, etc. Looking for people who have experienced the drilling and repetition.)
Thanks!
Any thoughts on Direct Instruction for a 12yo with ASD plus a diagnosed LD in language? Can any adults on the spectrum offer an opinion? I’m considering it for my son as we need to make a school change, but I’m worried that it’s just intense ABA worded differently.😉
(I know about Engelmann, the “evidence”, etc. Looking for people who have experienced the drilling and repetition.)
Thanks!
I am intrigued by your post. I have an 11 year old who struggles with English composition. He doesn’t seem to understand how to string together a paragraph in any logical order. We have switched him from public school to private, have tried Scottish Rite instruction used for dyslexia, have tried below-grade writing curriculum (which just ruined his vocabulary, based on the private school entry assessments – the cause was diagnosed by the private school headmaster). They are using Shurley method for grammar and parts of speech at his new school, which seems to help tremendously, since the children memorize jingles. Music seems to help with the memorization – and it is easier than simple repetition, although it is repetition. I have not heard of Engelmann and the evidence, however and am interested in any info you can provide. I will also Google search! Thank you!
… and I haven’t heard of Scottish Rite or Shurley method. 🙂 Lots of reading to do. Shurley method sounds right up my son’s alley, as he loved Jolly Phonics jingles when he was young.
We used the Language & Learning Center in College Station. But try http://www.houstonritecare.org/ to get an iea of their programs. It did not help my son.
Hi
I’ve been reading this blog for about a year and absolutely love it. My own daughter also has autism and is 14 and so similar to Brooke in looks and personality it’s uncanny. Well on to my question or search for support. Yesterday she had her first seizure and it has crushed me. We called 911 and went to emerg where she recovered fine. It’s left me feeling so scared . We are now on the path to get an EEG and see a pediatric neurologist in the coming weeks. Any similar stories ?
Uh. Yup. They’re terrifying.
https://adiaryofamom.com/2016/03/18/explaining-epilepsy/
Hugs to both of you!
Her neurologist’s office should have reversals to local support networks for both of you. You don’t have to wait for the appointment; just call.
Hi Jess, I have been reading your blog for a while and I have found that it sometimes helps me gain perspective in the thousand times a day I find that I have lost it. I have a 14 year old amazing and creative aspie gal with severe, sometimes aggressive meltdowns, emotional dysregulation, anxiety, SEVERE executive functioning challenges, emotional immaturity, as well as the obvious social pragmatics challenges associated with ASD. I find that I try and find the beauty in it, as you so eloquently and naturally are able to do, but more often just find myself exhausted and angry at a God I no longer believe in. I feel so trapped. I am often hit, sworn at, lied to, insulted and I’ve gotten so depressed. I’m in therapy (BEEN in therapy), on medication, moving my body, doing meditation, writing (I’m a poet), walking, seeing friends when I can (which is often hijacked by my daughter’s needs) and am in a support group for moms of teen aspies. (I am pretty sure I live really near you based on references I have seen in your blogs, maybe even your town, but am not positive and respect your privacy and will not reference where this support group is). So, I am doing all the right things, but this feels too hard. She has been bullied at school, sits alone at lunch, ignored, and excluded. I see how she turns people off at school, but when I try and coach her, she is totally defensive and resistant. She refuses therapy and when we try and force it, she will not get in the car. I’m just drowning. I often wonder how you maintain such a sense of wonder and appreciation, when most of the time all I feel is resentment.
It can be really hard to stay positive. I find that the hard – the really hard – parts come and go in cycles.
It’s part of why I have the mantra, “now is not forever and never is a load of crap.” I remind myself constantly that the hard does eventually dissipate – because in the middle of it, it’s hard to believe it will ever get easier.
This moment isn’t forever. Keep doing the right things. And just a thought if she continues to refuse help – perhaps an autistic peer or adult mentor with whom she could connect would help.
I know that for Brooke, it makes a huge difference to know she’s not alone.
xoxo
Thank you for responding Jess. So kind of you. I try and cherish the good moments. I try to give myself the metaphor of waves (this is just a wave, calmer waters always come later). I wish I could have the sense of wonder and insight that seems to come so naturally to you. I’m just so tired and sad.
Please make sure that you say that out loud to the people in your life who can help. Perhaps a support group – finding a place where you feel less isolated – could make a difference. Whatever it is, take care of you too. xo
Hello,
I just wanted to tell you about this new webpage http://www.iamunik.com where you can make your own personalized ebook about Autism.
All texts are prewritten in a personal and positive manner and you simply choose the ones that fit you/your child the best.
Kind regards,
Aron
Hello,
I just wanted to tell you about this new webpage http://www.iamunik.com where you can make your own personalized ebook about Autism.
All texts are prewritten in a personal and positive manner and you simply choose the ones that fit you/your child the best.
Kind regards,
Aron
Jess, you reach so many people on social media. I understand if this isn’t the appropriate forum for this request, but I’ve got to try. The victim in this story is a young man with special needs. He is my family. He was molested by a volunteer at Tech Access of Rhode Island on multiple occasions, and he and his family have come forward to share their story. Please see the link:
http://wpri.com/2016/10/27/cumberland-parents-sue-techaccess-volunteer-over-child-molestation-charges/
My 4-year-old son is autistic. He is speaking but a good portion of it is echolaic and he is “non-conversational.” He is interested in other kids, but the way he shows that interest is by putting his face close to their face or by waving his hands in their face. I’m trying to explain to him that not everyone is comfortable with that and that he needs to be respectful of other people’s personal space but it’s a work in progress. Do you know of any ideas for how to work on this/explain this? Any tips/suggestions/social stories/videos/books/etc? I don’t want him making the other kids uncomfortable by invading their personal space and I also don’t want his attempts at social interaction getting misunderstood and kids hurting him (He got bit at preschool today). Thank you for any help!
Hi! Wanted to get some info on good schools/ school districts in the greater Boston area/northern MA/ southern NH area. Considering a relocation from TX to NH. I have two kids – my 14 year old is in the spectrum. Limited verbal skills but independent in daily living skills. My younger one is a bright 10 year old (neurotypical). I’m looking for good family friendly areas to raise my family and lots of after school activities/ camps catering to both the kids’ needs.
Any help in this direction is GREATLY appreciated. Websites, support groups etc.
Thanks a TON!!!
Sandy, hopefully others will chime in, but a great thing about schools in MA is that each district is required by law to have a SEPAC (special education parents advisory council). Though they’re not always the easiest to find online, once you start to home in on particular towns, you can google the town name and SEPAC and come up w contact info for the involved parents in that town. It’s a great way to get info and a feel for the district from those in it.
That’s great! Thanks Jess. Any feedback on towns like Lexington, Acton, Lynnfield? Hubby says he’ll do the heavy lifting on travel – we just want to be in a good sped/gen ed school district. Thanks again!
Of those it’s my understanding that Lexington is the strongest. It’s also just a really lovely town 😉
Hi, as Jess said, the best thing to do is to go to those school districts’ SEPAC webpages and email their presidents. As we all know, each family is different, so one family’s experience in a school district may not be the same as another family’s, depending on service needs and all that.
Another place to call would be the area autism resource centers or ARCs in the areas that you’re looking at. They may have some info on local activities/camps that could help too.
Ok great:) Thanks akbutler, Jess!!
I was listening to NPR today and the person said something along the lines of “when you’ve met one person with autism, you’ve met one person with autism. You absolutely cannot generalize.” This immediately made me think of you and your blog/Facebook page. While I don’t have a child with autism I do have one with sensory and social issues. You have helped me in so many ways by being honest and vulnerable in your posts. You are an amazing person and I want to thank you.
Aw, thank you!
A friend sent me a link to a product that is being presented to some of our local schools. I am not the parent of an autistic child, but I do have a granchild with apraxia who also exhibits some delays in her sociality that I believe are related to her challenges with communicating verbally. (is it OK to use that word – challenges – without sounding condescending? I love this child dearly and don’t want anyone to think I sit in any of sort of judgment on her magnificent little self)
My point in writing is this: I am having some issues with the language used on the website as it pertains to to goals of the product: “Children using the Robots4Autism curriculum show observable increases in engagement: eye contact, body language and friendliness. Working with Milo, children act more appropriately in social situations, self-motivate, self-regulate, and generalize in the population.
Data and video recording by the robot ensure compliance with mandates is documented without additional work for educators and therapists.” from their website page “Why Robots4Autism Works”.
Here is the link to the product: http://www.robokindrobots.com/robots4autism-home/robots4autism-works/
Has anyone had any experience with a product like this and what is your reaction to the products and /or the website?
Thank you for your time.
Hi! My name is Melissa and I am a graduate student at Illinois Tech. My advisor (Dr. EJ Lee, PhD) and I are running a survey for parents and I’m posting the information here in case anyone would be interested in participating. Thank you in advance for your time!
——–
Survey for Parents/Family Caregivers of Teens/Young Adults with Autism, Developmental Disability, or Intellectual Disability
Participate in a survey for parents and other family caregivers of teens and young adults (ages 13-25) with autism, developmental disability, or intellectual disability. The anonymous, online survey takes 25-45 minutes to complete. Participants who complete the survey by May 15th will be entered in a raffle to win one of twenty $30 gift cards.
The survey link is:
https://iitcop.az1.qualtrics.com/SE/?SID=SV_eRIMY2nvUDozzox
Please contact Melissa Ivins-Lukse at mivins@hawk.iit.edu with any questions about the survey and please share the survey link with others. We hope that the information learned from this survey will help to better inform the supports available for families as their youth transition into adulthood. Thank you for participating!
——–
Melissa,
I’m curious as to why the list of intended respondents excludes autistic people themselves. While not all of them would be able to access such a survey, many more could, with or without help to do so. Why not include the ones who know the most about what they need?
Thanks for considering the question.
Hi Jess,
Thank you for allowing me to post the survey information here and for your question. I absolutely agree that it is important to hear directly from autistic people themselves. Someone else asked me a similar question recently, and I will definitely bring this up with my advisor. I think it would be wonderful to collaborate with individuals in the autistic community to create a survey to explore questions they would like to see addressed. I’m hoping this is something we might be able to do in the future.
For this survey, we’re asking to hear from parents and any other family members who might be in that parent role (e.g., grandparents, aunts/uncles, etc.) because we want to hear more about their wellbeing and experiences as caregivers. A lot of the existing research focuses on parents of young or preteen children, and we wanted to help expand this by surveying parents of teens and young adults. We know that this transition to adulthood is a time filled with changes (both exciting and challenging) for any family, and we hope it could be helpful to learn more about parents’ experiences during this stage.
You make a really good point though. There is a real need to hear directly from autistic individuals about their experiences and views.
I would love to hear any suggestions you or anyone else might have for things you would like to see covered in a future survey. Thank you again for your time, I really appreciate it!
Best,
Melissa
(mivins@hawk.iit.edu)
Hoping you or someone in this community may be able to help. My son is autistic and has been struggling lately. I’m guessing it’s been because of all the end of year stuff at school (he’s in K this year) and the anticipation of summer. That kind of stuff always throws him off. But he’s struggling more than he used to. He used to get upset easily and have a meltdown with crying, but let me comfort him and then we’d all move on. But now he’s lashing out and hitting, even biting his older brother, he is defiant (as in tells us to shut up – or won’t stop doing things he knows he shouldn’t). the violent and defiant behavior worries me, because we’ve never seen it before in him. Normal disciple typical does nothing for him and usually backfires, so we are having a hard time finding something that will work that we can be consistent with. And also trying to help his older brother who is struggling to deal with it too – he’s the one getting hit and usually sees it as his little brother getting away with it. He starts OT again next month, but that’s only once a week. We’ve talked to someone about a behaviorist, but I don’t really know much about what they do. Any advice on how to help him deal with his emotions better? And how to disciple so he knows these actions actually do have consequences? I hate to punish him because he just doesn’t now how to deal with it all, but he has to learn that he can’t deal with it like that. Ugh, I just don’t know what to do.
I know your post is months old but just incase its helpful, id like to share that I was confronted with these behaviors at the same age. At the advice of a behaviorist, my husband and I took these steps at home
A; started with creating a calm, safe home. We took a step back, took deep breathes and looked deep inside to pull out EXTREME LOVE, patience and nurturing. We made our home tranquil, calm and happy.
I struggle with anxiety and mood swings so I tried to become as SAINT like as I possibly could. And guess what, I actually became the calm, patient parent I desperately wanted to be…through practice!!
B; practiced EXTREME POSITIVE AFFIRMATION. Every 3 minutes (set a timer)…”I love how you are sharing with your sister” ” I love the way you got into the bath without crying” “look at how much fun your having”
The timer was temporary, just long enough to get results. With time we would compliment him naturally.
C; Turn everything into a POSITIVE.
NO threats.. example ” if you don’t finish your carrots, we won’t go to the park”
instead…. ” when you finish your carrots, we can go to the park!
We used “please practice being a good listener” instead of “Why don’t you listen!” or ‘LISTEN TO ME!”
D; NO punishment, instead, Rewards and natural consequences. We eventually made a nifty reward chart at home. Made up of essential daily reminders in a checklist form.
E; later on, when you have had some success, SHARE with your childs school, what works for your child. Make sure his teachers know what works for him at home.
Obviously this method of parenting is controversial to some. But when you have a child who processes differently I think its easier to see that most traditional punishments can be cruel…I tried parenting the way my parents parented me….my son would go into fight or flight and meltdown so severely. One day I was confronted by a lovely neighbor, who scolded me when I was at my worst, screaming at my son after he hit my husband in the face. What a mess.I felt like the biggest piece of shit. I knew I needed to reach out. Thats when I learned that my son was actually on the spectrum, before that he was diagnosed with developmental delay NOS. With the new diagnoses, we spoke and listened to as many people as we could.
Within a few months my son felt safe, was able to relax and his expressive language came. He responded so well, his meltdowns were easily defused until they almost disappeared entirely. He just turned ten, he never has violent meltdowns. He will get emotional, but he is able to communicate his feeling so brilliantly.
bottom line, we really needed to change the way we parented to support his emotional growth.
Sending you love & wishing you and your family happy tomorrows!!!!
Does anyone have recommendations for a pair of noise-canceling headphones/ear protectors for adults? The only ones I can find specifically for auditory hypersensitivity are for children, and my head is definitely too big for those.
From a friend –
I’d try Home Depot in the lawn mower section. That’s what we used for a while. Bose makes a pair of complete noise canceling headphones but they are pricey.
Hi Jess,
About a year or 2 ago you posted a blog about rape. It was very real and raw. I need a link to that so I can share with a friend who is struggling! Can you help me?
I wrote it on Huff Post. If you Google jess wilson Huff Post rape you should be able to find it.
Hey there, I’m wondering, what’s the consensus on social skills groups? Are they helpful or harmful? We’ve tried them and I’m not exactly happy with it and so now I’m trying to figure out if we need to keep looking for a better option or if they’re actually pretty awful and not worth the time. My kid has ended up in some challenging situations and I refuse to put him with people who are going to actually listen to him when he says that he’s tired or uncomfortable (calmly saying these things) and not going to put him with someone who’s teaching him that he needs to change himself in order to fit in. I’m so disappointed in these people masquerading as “helpers.” I have an amazing, intelligent, expressive and compassionate 12 yr old. He can definitely benefit from learning more about how best to interact with people but he’s doing amazing on his own.
anyone else been here?
oops, “aren’t going to listen to him”
Earlier this week a boy in our community was beaten by several older big kids at school. This boy has aspergers. His mom is attempting to rally the troops to address the school district on how they handle the topic of bullying. As someone who wants to help make the rules of bullying stricter for all kids no matter who they are what can I do or suggest? There was an account set up by this mother’s friend to raise funds for an attorney but I think there should be more done.
While I completely understand your motivation, I’d strongly urge caution when it comes to “making the rules of bullying stricter …” as those rules can VERY easily backfire on our kids.
Far too many times, when a bullied child reacts to being bullied (say, hitting back once after being pelted by punches), their reaction is called bullying and they are effectively punished (or kicked out of schools) for having been bullied.
For my money, my question isn’t how we punish these kids as much as it is how we stop them from bullying before they start – how we empower bystanders to be upstanders, how we teach acceptance and how we foster community. It’s a simple concept but I believe that its solution is far more layered, nuanced, and fraught than it might seem.
I’m grandmother to a 7 year old boy child with severe.ADHD, Aspergers, Autism with no official DX because the professionals have been ‘unable’ to diagnosis partly due to Alex’s being so young. My daughter and I are in need of support/help and advice as a matter of urgency. Thank you.
Hi Lorraine-
I’m not sure where you live but my children were diagnosed at age 3.5 and 2.5. Someone is giving you the wrong information.
I’d google your local children’s hospital or ARC and get the name of a development pediatrician or neurologist who can give you the right information.
Good luck! He’s a lucky kid to have you looking for information for him to get him help.
Jess and fellow friends,
I have been a loyal “diary” reader for years. It keeps me going reading about all your adventures and reading the comments give me ideas and hope. Recently though, things are all falling apart. Kids are getting older, issues are only getting bigger with them. Schoolwork is getting harder for them….heck even the 5th grade math is almost too much for me. My marriage is falling to pieces, my health is terrible (I had thyroid cancer in 2013 and never really got back to 100%). I’m getting by day to day thinking tomorrow is going to be better but it seems more of the same….. All I dream about is a day without a tantrum, a day without a fight or stress. More so, I wish I had a friend that I could just talk to. I have secluded myself, pushed people away and just been distant with everyone. My main focus are my kids….trying to get them to the best place possible but, it’s so isolating! ❤️
Hi Jess and hi community!
My name is Meghana and I work for Popcorn For The People, a social enterprise of the nonprofit Let’s Work for Good, whose mission is to provide employment for adults with Autism and other Developmental Disabilities. We train and hire workers with Autism to cook, package and sell gourmet popcorn. Popcorn for the People’s Autistic workers handcraft gourmet flavored popcorn including French Toast Popcorn, Cookies & Cream Popcorn and a dozen more fun, artisan flavors.
This organization works to combat the 80% unemployment rate for adults with disabilities. All profits go toward employing more workers with Autism, enabling them to sustain themselves in society. We are the only organization hiring adults with Autism to sell a trademarked product on a national level. On top of that, we sell delicious gourmet popcorn!
We love the work done on this website and believe that this is a great opportunity for you and your audience to support a great cause as well as enjoy some amazing popcorn.
To learn more about our mission and our popcorn, our website is popcornforthepeople.com.
I had a question for the community regarding the recent closure of schools due to the corona virus. For those of our kiddos differently abled and typically receiving accommodations and specialized services(resource, speech, OT, etc.) to now just be sent home with(in our case) a Chromebook to navigate a few educational websites and a “packet of worksheets” to be done by well in this scenario I am a respite worker as the family/primary caregiver is a grandmother who speaks little English and unable to navigate all these “assignments”…so my question is…how do you feel about how this “distance learning” is being handled by the school system for our kiddos? Is it even legal? I don’t see how it’s following any IEP standards, let alone IDEA ACT standards. Does that just all go out the window in a pandemic and are we supposed to be ok with it? I’m feeling frustrated not just for this family/child, but for all of my kiddos and families that I know can’t just call someone up and say “HELP!!! I hate this stupid Chromebook and don’t know how to use it!” Or “Johnny’s teacher sent home 500 worksheets what how am I even going to get him to do all that??!” Especially concerning me is if schools don’t go back the rest of the year like some states have already decided. Thoughts?
I can’t speak to all states, but where we are in NY state, any assignments or work given to the kids while they’re on this pandemic break is ungraded and will not count towards any graduation requrements/moving up requirements for the next grade level. So, since it’s all just “free busy work provided by teachers on the kids’ down time to help them hopefully not forget what we taught so far this year”, but not “School”, there’s no IEP requirement connected to it – it’s ungraded and not required to be done or turned in at all. The NY state schools have waived the required 180 days of attendance per year already so that the kids can be considered to have completed this grade level / school year no matter what happens from here. They’re also talking about cancelling state/standardized tests and I think doing the same with regents exams. So, while it sucks that the kids are bored and not learning, at least this isn’t going to affect their school career grade-wise. I don’t know where you are, but I’m relieved that where I am, at least, this is how that’s being handled. Maybe it’s the same where you are? I sure hope so any way. Just a thought. Best wishes.
Hi Jess, I am hoping you can touch base with me in relation to Brooke’s term “Nautie” to describe NT people. I am an autistic researcher in Australia doing a doctorate and I would like her permission to use the term (with due acknowledgement) – please contact me at your earliest convenience. Cheers Meg
Hi Meg. She doesn’t use nautie (though that’s a good one too!). She says “nautistic.”
You’re welcome to use it with attribution to her (as “Brooke” Wilson – with the quotes around the first name since it is a pseudonym) and, if it’s in a scholarly work, a link to diary. Cheers!
Hi!
I was wondering if someone could point me in the right direction? I have a friend whose daughter is about to turn 18 and she’s trying to fill out guardianship forms for her so that her daughter is able to get the help she needs after she’s 18. I am unsure of her medical background or diagnosis but do know that this paperwork needs to be filled out asap. We are located in North Carolina. Can anyone help? She’s not understanding what to do and she’s asked for help and has gotten no response from anyone. Thank you!
This has a detailed explanation of the process..
Click to access Guardianship-Toolkit.pdf
And some info on why it’s vital to limit guardianship as much as possible ..
Click to access Resource_Brochure_Limited_Guardianship_2013.pdf
Thank you so much! I’ll be sending her this now!