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, not to mention the broader, just plain-old human 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While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.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.
Edited to add: Diary and its accompanying Facebook page mean the world to me. The people who gather here to laugh together and cry together and learn and fight and breathe together, to celebrate and mourn and pray together, have become my family. I will do everything in my power to keep this space safe for them, for all of us. I therefore have a “zero tolerance for intolerance” policy. Neither hate nor bigotry are welcome here. Ever. I have a “ban user” button, and as much as I hate to use it, I will engage it freely in order to protect this place. This is my home. I will not abide hate in my home.
Thank you for being here and sharing in this incredible journey.
Hi Jess, my name is Andre I am from Brazil!! I found your 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, I dont know.
The link is: https://pt.surveymonkey.com/s/YQG8CW9
If you can, I’ll be extremely grateful. My email is firstname.lastname@example.org, if you have any doubts or questions can send me an email. Thanks…André Luiz
Andre, Please feel free to leave the request in the comments on the Community Support page where others will see it.
Thank you for allowing us to share here.
I am so sorry it was necessary in such a forum to have to say something like this! Your blog has been a source of strength for many…try not to get too down about a few people who miss the point.
Who’s bothering you? Just say the word…
Just sayin..your back is covered 😉
You always say things so well! You go girl! 🙂
Too bad this happens. A shame really! I LOVE this blog and follow on Facebook too! Thank you so much for being here!
thank you all so much for your support. xo
I am always surprised at the depths of peoples anger towards other families dealing with autism on message boards! I respect the fact that people disagree but so much time is wasted on negative, why bother?
Great policy, Jess!
I am with ruh roh…
and know that I love you all, and feel so grateful that you let me in to share the journey a little with you….xoxo
It’s nice to see a site with so many positive attitudes and comments. I have a 17 y/o with a dual diagnosis of Down Syndrome/Autism. He is so precious…as long as he’s happy , I am happy. Now I also have a 21 y/o son who I believe strongly has ben misdianosed for A LONG TIME. He has been labled with ODD,PTSD,DEPRESSION,OCD…too many to remember! He has all the hallmarks of Aspergers but will not have anything to do with that diagnosis so I don’t battle with him.(Other professionals have agred with me) He has made some great strides in the past couple of years and hopefully will be starting college next year but in his words “I have to ready” Mean while he keeps himself busy with his art (he wants to major in animation). It has been a rough 32 years ..I have four other children but the rewards are what remain. Gail
‘the rewards are what remain’ .. beautiful. thank you so much!
As a teacher of students with autism there are so many things I need to understand about my students and parents. Currently, I have a student who is struggling with behavior in school and the parents feel sure the school is to blame for the issue. If you could help me in any way I would be so indebted. My little guy tantrums when any demands are placed on him that he does not wish to comply with causing disruptions in learning for the classroom.
He is smart and engaging, but missing so many things because of behavior. The parents are loving and very supportive but in denial about the extent of his behavior. He is at risk of being suspended from school and they finally realize we must do something to help this child. He has been diagnosed autistic, sees a psychologist, is medicated (prozac and risperdone), has hyperlexia but school is a battleground. The parents report the behavior at home is just as bad. Any advice to me as his teacher would be helpful. Also, I am an itinerant teacher who travels to seven other schools so I am not with him all day. He is in a general education kindergarten with about 19 others staffed with a teacher and aide. He does not receive any other special ed services other than me which is once/week for 45 minutes. Thank you for your blog and the invaluable insight you have provided me into the workings of the family with such a special child.
This little boy is very lucky to have someone seeking information on his behalf. Unfortunately, I think it would be really irresponsible of me to dispense advice knowing nothing about him or his situation. It sounds as though he desperately needs far more services – beginning with an inclusion specialist or case manager working with a BCBA (a board certified behavior analyst) who can work to create an appropriate program for him. So many of our kids tantrum when they don’t have another way to communicate distress. It’s vital to create structure and predictability for our kids – visual schedules telling them what to expect can dramatically ease the challenge of transitioning from one activity to another and help our kids understand what’s expected of them. It sounds like the best thing you can do is to alert both his parents and the special ed administrators that the child desperately needs far more support in the classroom than he’s getting. Again, on behalf of all of our families, I thank you for trying to help and wish you all the best as you work to serve this child appropriately.
Thank you for this…in all the best of ways…I have worn the cloak and it too is hung…and now only joy…and work….and joy!
Like you, we get beautiful, candid pictures of my daughter. Getting somebody in the frame with her is tougher, but not totally impossible – but it’s ALWAYS candid and sort of “blink and you miss it”. (she’s also not a lap kid, which sort of makes it harder) The only photo of all three of us in the frame together occurred before she was old enough to object – about 5 months old – she’s now 3. My MIL is constantly trying, at parties and group events (another 2 issues in and of themselves) to get her to participate in said photos…it doesn’t happen and we don’t force it. I would love to find a photographer, who didn’t cost an arm and a leg, to just take a couple of shots of the three of us.
My name is Amy and I have a son that was recently diagnosed with Autism with Developmental Delay. It has been an everyday battle of ups and downs and the one constant in my life was my job and there support with bringing Christopher out of the shadows. Christopher is doing incredible, I wish I could say that about the job. Unfortuneatly I was informed yesterday that my job as the Assistant to the President/CEO was over. That Iwas moving to the front desk of an association to answer phones from 9-5pm Monday thru Friday. My boss was always so supportive when we received the diagnosis this past March- I was told do whatever you need to do for Christopher. We did. He is now in numerous therapies 5 times per week begining at 8am most days. I informed him of the schedule and he was “fine” with it. I was informed yesterday that I need to report to work everyday at 9am- which means I need to leave the house by no later than 7:40am. In turn, means missing therapies. Me and my husband share the responsibilities of Christopher’s therapy schedule and schooling together as a team. He is the “bread winner” in our family. Is there any laws out there that can help me with being able to arrive at work late? I could understand that if there was a reason for me not to be able to complete my work – but there is no work load. There has to be something out there…. we don’t have the typical situation with our child… any help would be greatly appreciated. There has been many comments that he has said that I have a special child and I should consider being a stay aty home mom…
Amy, I’m so glad to hear that your son is doing well. As for the questions regarding the job, I would suggest contacting the Autism Speaks Response Team – they can hopefully help.
Hi Jess, I’ve been reading your blog for a while now to write in today. I reread your Welcome to the Club today, and you know what? Turns out you were right, I’m not wearing that cloak anymore. It must be hanging in my closet today, and it feels fabulous!
Oh this warms my heart!! Thank you for sharing. xo
I have a son PDD-NOS. i read you and MOM-NOS frequently. I thought you both would be interested in this blog entry. I live north of New Orleans and have tried to attend parades with my whole family. My PDD son could care less about the parades :). Thanks for reading and I hope you enjoy the comments to the blog as much as I did.
That was beautiful. I also think that people who work with special needs children should also get a thank you! I worked for a special needs group home in CO with 10 kids and worked about 90 hours in 6 days for 5yrs. It wasn’t always roses and I got beat up everyday. You name it its been done to me even a broken nose. They taught me patiance; over coming small obstucles is a big deal; you can act silly as you want and they laugh. I can go on and on… They were my family. When I tucked them into bed and they give you a hug
that’s when I said to myself I can make it thoug another day. Then told them I will see you tomorrow!
What a great piece. So happy to have found you. Here some info on a project a friend and I are working on….. http://5boysand1girlmake6.com/family-life/changing-the-face-of-beauty/
Hi, I really enjoy your blog. I wanted to let you know about a research project I am conducting. I am a neuroscientist but also the Mom of a son with ASD. We are trying to find biomarkers that can help facilitate ASD diagnosis. Here is the link to our project. I hope that you will be interested.
Thanks so much,
Here is the link that goes to the comment above, silly me!
I noticed a like on a status off your Facebook page , I continued to read and read , smiling to myself at achievements such as the switch from the Hershey bar to the lollipop, but also felt sadness for your little girls struggle and your families ! But wow what a lady you are , it’s our job as parents to do our best ,you are excelling this ! so from a mum in England keep blogging 🙂
Thank you, Alex 😉
With everything going on in your world right now, this is going to sound silly. But I’m going to share it with you anyway! I don’t even know if this is the correct way to message you. If it’s not, I apologize. Anyway, I was in Target this morning and I saw an entire shelf of “Dora the Explorer” tissues. I immediately thought of you and should let you know they were there. Ya know…just in case someone in your household likes Dora. Here’s hoping y’alls day gets better!
Look at the FB page 😉
Hello, I have been following your posts for awhile and have a question you might know something about….Have you ever used “Autism on the Seas” while on a cruise vacation? I have a high functioning child with Asperger’s. Socially immature but cognitively typical but advanced in Math/Science. I don’t know if their services would really be any added benefit to us.
I’m not familiar with them. I’d suggest posting the question on Diary’s Community Support Page – hopefully others can help.
Hi Jess…. I read your blog everyday. I love the way you write……and I have to let you know…I thought of you today….
Today I ran into a store to buy one thing and left my 16 year old son in the car. As I was at the register my son text me that someone hit my car. Ugh I left my item at the register and ran out into the rain to see what happened.
She was a very nice woman and apologized over and over. My son was fine and my car was bruised. But I needed to call the police to have it written up on a report.
The woman was still pleasant but stated 2 of her children had autism. and she had one with her and she had to pick up the other one at therapy. Right away I thought of you and Brooke! My mind raced ..what should I do? Do I let her leave? I wondered how is her child in the car? Her child will need her..but i need her to talk to the police.
I told her to wait in the car with her child while we wait for the police.
Which was only minutes.
I don’t know why but I had to let you know this…the way you write you educate people like me who does not have a child with autism. I wanted her child in the car to be ok with an unfortunate situation going on in a parking lot in the rain. I wanted her child at therapy not to get upset because their mom would be late picking them up. I just wanted them both to be ok.
I’ve been a reader of your blog for a while and just saw a beautiful Ted Talk that reminded me of you and your unconditional love for your children. I hope you are able to watch it, or even post it here to share with your many followers. http://www.ted.com/talks/andrew_solomon_love_no_matter_what.html
I finished my undergraduate degree in Early Childhood Special Ed and will be working in the field of Early Intervention. I am looking forward to working with families like yours and appreciate your insight into how difficult and overwhelming those first few years can be as a parent when you recieve a diagnosis for your child. I really enjoy reading your blog, you are a great advocate!
I love this blog! I find it helps me to be a better parent, and hopefully more kind to people around me. I have a question – my son will be participating in this: http://web.uvic.ca/~letsface/letsfaceit/?q=node/30. He’s only 6 so I’m pretty sure he doesn’t understand anything about autism at this point. What words do I use to explain autism to him? I want him to have an idea about what’s behind the research, but I don’t want to give him a vocabulary that’s offensive or demeaning in any way. I’d appreciate any advice you have! Thanks!
kathryn, i’d suggest leaving your question on the community resource page (the link is at the top right of the blog). folks are wonderful about offering advice / suggestions. in the meantime, here’s stephen shore’s approach, which i think is brilliantly simple and direct ..
1. Talk about the child’s particular characteristics. Cite strengths first and then talk about challenges.
2. Line up strengths with challenges – identify those that can be used to offset each other.
3. Non-judgementally compare their set of characteristics with other people. Include luminaries that feature prominently in history or popular culture. Newton, Einstein .. you know the drill.
4. Explain that the particular set of characteristics have a name and that there are others who share it.
I began to follow you via Facebook, and I’m not even sure how. I’m in Wyoming which from your posts you are no where near me. However, I think what you do is amazing and the strength you carry and the message you spread can only be seen as a blessing. Which I’m sure you hear often. I was curious if through your experience or those you may have had a take on you have an opinion on whether vaccinations lead to autism. Perhaps you’ve seen or have not that it is in the news that Jenny McCarthy will take over on the view. And there is a lot of controversy because she believes vaccinations led to her child being diagnosed with autism. And on the other side it can be extremely dangerous if children don’t receive certain vaccinations. Have you ever wrote about this issue or have any thoughts? I hope to hear from you!
Thank you for all you do. :).
This has been my only mention of her –
Hello Jess- I am so grateful to have found your blog and look so forward to your latest entries each time I log onto FB. I am curious to ask you about your thoughts regarding Eustacia Cutler’s piece in The Daily Beast regarding Autistic men and child pornography… (I would’ve asked you about it privately if I could have figured out how but as embarassing as it is, I am stuck in the 80’s-okay maybe 90’s-technologically speaking despite my best efforts to improve my skills!)
Would you be comfortable sharing your reaction/thoughts about it? I just keep wondering what you think about it as I process my own personal reaction/thoughts. I have my opinion and am in no way looking for validation or to pick a bone of contention by asking you. I have a deep respect for your thought process and life experience and am genuinely curious to hear what you make of it.
Thanks so much.
oh dear god. i haven’t read the piece and i’m not so sure i want to. and by not so sure, i mean i really really don’t. can i just hide under my blanket fort for a while?
Haha, permission granted to hide in your blanket fort! I gotta tell you, it’s a whopper. I saw the article posted by Mama Be Good to FB yesterday, read it and was speechless, well not really but almost!
May there be chocolate in your blanket fort! 😉
Is my answer.
*fans self – deep breaths*
I tried to reply earlier but I think it got lost-I warned you about my technological challenges!
I think Emily Willingham nailed it and so did you in your post today. As always, thank you for speaking from your heart, especially in this case. I think it was important for you to do so, our community so benefits from your voice-one of warts and all honesty, intelligence, strength, candor, and compassion. It sounds dramatic but I feel wounded by that dark, disturbing, and shameful mess of an article, especially because of WHO wrote it. I have seen some ugly and angry responses to the article and I thank you for being authentic and compassionate in your response.
Hi- I was wondering what your take is on melatonin? And if sleeping issues is one if the things u r dealing w/ (in kids).? Thx for all ur posts!!
sleeping (er .. not) was a big issue for us for a time. we used melatonin with a lot of success until suddenly brooke ADAMANTLY didn’t want to take it anymore. we’d read about the possibility of nightmares on it, and given her sudden overwhelmingly negative reaction to it, we thought perhaps that was what was going on, so we took her lead and discontinued it. although she has trouble falling asleep sometimes now, she gets there eventually on her own, so we haven’t had to revisit the conversation yet (knock on wood.)
I don’t know how I stumbled upon your Facebook page; some underlying force directed me to you. I also am a mom of an autistic son. My Nickolas is 5 beautiful years old. I live the same struggles as you and have celebrated some of the same triumphs. Your page helps me every day. I watch and follow and hope that Nickolas will shine and blossom like your daughter. After reading all your posts, it gives me hope. He is my angel and along with my 3 other children, I wouldn’t change one thing about our family. He has taught us all patience, humility and the ability to celebrate the simplest of things. (Like taking a lick of an ice cream that has a sprinkle on it!).
So in my round about way I want to thank you for this blog. You are helping so many of us that feel as though no one gets it.
You and I have many of the same thoughts ( but you have the gift of putting it on paper).
Thank you again!
Cape Cod, ma
My 4 year old has recently been diagnosed. I’m not “out” yet (whatever that means) but the last few months have been the scariest, sad, confusing and uncertain of my life. I just want you to know that reading and following you is helping me. A lot.
I’m so glad. If you haven’t yet read Welcome to the Club or D Day, please do. They’re both in Diary’s sidebar. Much love as you begin the journey.
I was just given the link to your ‘Welcome to the Club and D day’. Wonderful. My youngest isn’t dx’ed as autistic, but I think she has autistic features…….these go along with her chromosome abnormalities—which can be so tough at times—just for the not knowing aspect. I am an older mom with three other children at home. I dearly appreciate that you’ve hit the nail on the head in terms of the sorrow and pain of an initial diagnosis and trying to put it into perspective. Your blog entries were so ‘spot on’ I literally wept when reading them. *You* get it and I thank you for reaching out your hand to let us know that. Thank you, and looking forward to reading more of your entries…..”Linny”
Jess check out : Happy Birthday Colin on Facebook
I wasn’t quite sure where else to ask this but I wanted your opinion on a topic. I respect you so much as a Mom and I adore your blog. I have an eight year old son on the spectrum and he and Brooke are so similar.
My question to you is how do you feel about Autism Awareness Day at school? We live in a tiny, tiny town where everyone knows everyone. The teachers know my son, they know who he is and he is accepted by his peers for the most part. I am sure people know my son is autistic, but I don’t find it necessary to have an Autism Awareness Day at the school because there are maybe a handful of students in the school who are on the spectrum and they (the teachers and administration) are calling out their differences and putting a label on these children. My son has enough challenges in his life – he doesn’t need his peers pointing them out to him. He needs acceptance, friendship, love. I was opposed to it last year when they wanted a big hoopla (kids creating puzzle pieces in the classroom, talking about autism in the classroom, having an event in the gymnasium (ummm, sensory overload anyone??) etc). I asked why they couldn’t have a ‘difference’ day and how everyone is different and the kids need to accept ALL differences, not just autism. To me, its a very ‘old fashioned’ way of thinking these days. We need acceptance of all differences, not just autism.
Am I being too sensitive? By the way, the school did not mention to the parents of the kids on the spectrum that they were doing this – no email, no note, nothing. Maybe I was the only parent they didn’t contact because I was opposed to it last year and the director of special ed wanted to get her way this year.
Just needed to bend an ear of someone who may understand my feelings.
Thank you so much for sharing your journey with the rest of the world. I look forward to your postings every day.
wanted to make sure you saw that i replied, tho it took a popst 🙂 xo
I did 🙂 Thank you so, so, so much ❤
I am scared to death. I am writing here because I feel I will find a safe place of understanding. You are so generous with your joys, fears and frustrations. Thank you. I am scared because tomorrow I meet our new IEP team. I don’t have the current one whipped into shape yet. I am battle weary and here we go again; new people, new landscape, and new hope (I hope). But mostly it’s freaking high school. Please pray, chant, burn incense, whatever it takes to get you to your One Who Hears. Thank you
oh, honey. we’ve got your back. you’ve got this. xo
Big squeezes and chin up darlin. We are making the leap from second to third grade here. New school, new team, new expectations. I get it.
I’m looking for an older post that talks about how you spoke with Brooke’s class about autism. I feel compelled to do the same for my daughter’s class (my son has autism). I’ve spoken to a class at our local college, but not kids… other than my niece and nephews. I’m hoping to copy off of you and put my own twist on it… cuz I do that a lot. You see, you write FAR better than I can express… but I’m learning and getting better every day. Can you direct me where to find your older post?
This is the post you want. It’s not mine; it’s Mom-NOS and it’s spectacular.
Yippee!!!!!!!!!!!!! Thanks so much!
saw this and wanted to share :0) http://www.godvine.com/You-ll-Never-Hear-a-Wind-Chime-the-Same-Way-Again-Hear-the-World-Thru-His-Ears–5063.html
This is absolutely beautiful. Thanks for sharing. #TissuesNeeded
I have been hoping that one day someone with some following would write about the things that tend to divide the autism community. Honestly I think you’re the one. What do I mean by the things that divide us? (Not that you would need to ask). We have so many subgroups that our message about who we are as a community becomes confused and garbled. Here’s my list:
-environmental pollutants people
-diet as treatment people
-TACA crowd, they’re looking for a “cure”
-genetics people (I’m here)
-Non verbal people often looked upon as “low functioning”
-high functioning people that don’t generally want to be lumped in with the general population of people on the spectrum and use the term high functioning as a way to set them apart from other people with autism.
-the person first people who are offended by being referred to as autistic.
-the “autistics” that wear the label proudly.
-and finally the Neurodiversity people.
I hope in the future that all people on the spectrum and their families can come together in a more unified way
I have recently started following your FB page and am enjoying your stories. My nephew is an 18 year old young man with autism who stole my heart the day he was born. He is quickly rising in fame in the autism world and I wanted to share two resources with you. The first is my sister’s blog. She started it as CJ was approaching his 18th birthday and it has become quite a resource for parents of children with autism who are approaching adulthood. Her most recent post has gone viral, as it describes the special friendship between my nephew and the #3 pick in the NFL draft. The second is a program at the University of Central Florida where individuals with special needs can communicate with avatars in a unique way. The video was used at a recent university conference and spotlights my nephew.
Your right, with two kiddos on the spectrum and it knowingly being 1 in 50- Brooke & parents are not alone!
Thank you for your blog!
I enjoy following your Facebook page and the journey that autism has taken Brooke and your beautiful family on. My daughter and I are on that same journey. I see a lot of similarities between Brooke and my Maggie Rose. My reason for this email is to share with you a resource our family is finding to be incredibly positive. You may have heard of Skills for Living in Norwell. They hold many social groups based on kids interest and some by age. The groups are based upon the principles of social thinking. Each group is supervised by professionals trained in special education. They are there to help the kids work through any social problem that may arise…. In real time, as it’s happening. I love this place and my daughter does too! It’s bright and fun and effective. We live in Braintree so a trip to norwell is nothing, not sure how far you live from there but I 100% recommend it. I think they are definitely worth checking out! Have a great day!
I want to start by sayin thank you and brook for sharing your story with the world thank you for takin the time out of you day and thank you for all the inspiring words you have shared. I just started reading you blog but you and brook have taught me so much. She really is an amazing special little girl and your truly an inspiration to all mothers.
Thank you everyone!!!! Friends and family – I cant thank you enough for helping out with this survey! I know many of you forwarded it on to your friends and colleagues, and as you can see from the email below from my sister, you had a profound impact on my nephew “I”I cant thank you enough for the support, and you all definitely made a difference in Ian’s life!
I don’t belong to Facebook or have access to such a wonderful network of friends, nor does “I”, so I don’t know how to thank the almost 2000 (!!!!!!) people who took the time to fill out the survey. Final number – 1958 – before I” closed it and began processing the answers.
I wish you could have seen Ian when he told me how many people had responded. Those of you who know him will appreciate how special and heartwarming it is to get his quiet smile and a chuckle when he is happy. Well he was more than happy, he was overcome. He was bouncing in the car and grinning from ear to ear. He said that his professor was “shocked into silence” when he saw how many responses “I”had!
I told him that his family had rallied for him and that people all over the world had pitched in to help him. It showed how much his family loved him and wanted to help. And he was glowing with happiness.
You guys are the best. I don’t think there are words to tell you how much this meant to him and me. I wish I could give you all a big group hug.
There are tears of joy in Houston,
Love, love, love you all!!! M
I am so excited to read this! Yay! Thank you so much for coming back to let us know.
Thank you for your notes… as a mom of a girl on the spectrum I find a lot of insight on the words of other parents and autistic adults. I was noticing that you have some links to Autism Speaks… some are a couple of years ago. I had the feeling that your attitude is of acceptance and respect to the autistic community and your daughter, so it’s a bit puzzling to find those links & other comments here.
Florencia, the blog shows the evolution of my thinking over time. I have not scrubbed it clean of past posts because I think it’s important to show the whole journey of where we started, why our thinking changed and where we are now. You have, however, inspired me to add links to these two posts in my blog roll so that they will be prominently displayed so that there’s no question of where i stand now. Thank you for that. 🙂
Hi Jess, I have been reading for a couple of months now and love your blog! It’s so good to hear someone else going through the same challenges as I face.
I have an eight and ten year old both with high functioning autism, (me too!) and it is just the three of us.
My eldest really struggles to find the words or even the actions to self regulate her emotions. I noticed that broke is managing this really well, and I was wondering if you could tell me how you helped her with this. For example was it speech therapy or Occupational therapy? Or was it something else that you worked on with her that helped her to connect and articulate?
I am thinking in particular of your chocolate cake blog.
I hope you don’t mind me asking 🙂
EClare, I posted an answer to a similar query on diarey’s FB page a week or so ago. I’ll try to find it later tonight and copy it here, but if you have time first, it’s there somewhere 🙂
I have been reading diary for some months now and althought I don’t have autism or any direct experience with it I still find reading you story and the story of your family inspiring and engaging. I can still empathise and understand so many of the struggles that we go through as humans to communicate and to be understood – regardless of our neurological state – and I wanted to say thank you 🙂
I have therefore nominated you for a blogger award; you can read all about it over at my blog: http://walkthewheel.wordpress.com/2014/07/10/a-very-inspiring-blogger/
Please don’t feel obliged to continue it if you don’t want to but also know that my nomination was made out of a great respect for your writing and your sharing and not out of boredom or a desire to frustrate already busy people!
Very best wishes to you and your family.
aw, thank you, keli. i look forward to checking it out later today 🙂
I have been reading your blog for years! I love your perspective and it informs me personally and professionally. I am working on a training for Pennsylvania early interventionists and would love to take a look at the diary entry from when you gave a talk to MA EI staff. I think it was along the lines of “What you should know”. Can you direct me to that entry? I have looked but cannot figure out where it is!!
First and foremost I NEED to tell you THANK YOU! (You may quit reading now if you’d like, because that’s the most important part of what I need, or feel drawn, to say). My name is *Lynn*, I was diagnosed bipolar at the age of 14 and there have been so many ups and downs and totally insane moments between now and then that it’s hard to even put it into words, but moving on… At 19 I had my son and the world was good, but as he got older the world got worse and worse I had no help, I couldn’t control him, he got indefinitely suspended from school (in kindergarten) I didn’t have a clue as to what was wrong or what to do to help him. Finally, he got diagnosed with severe adhd and borderline personality disorder, I felt horrible and guilty and unfit to be his mother because “it was all my fault” “he got it from me”, and I would love to say that I handled it the best I could but I can’t. I felt sorry for myself, and angry that he was like this, and there was soooo much that I didn’t know it was overwhelming.
I started self medicating with alcohol and then drugs and then…. my son was taken from me. For 9 years, almost no contact. The first of those 9 years I can’t even recall, I hated myself to the point of self destruction, my child was out there and he needed me and I had failed him, I was still failing him! And then I went to a food bank (I had spent all of my money on drugs), and while I was in line this gentleman drew a picture of me (without my knowledge). When the line moved forward he handed me the picture and for the first time in my life I saw myself, I saw who I had become, and I was disgusted! That was the turning point. I never did another drug, I worked my ass off to better myself. I got a job, I gained weight (a little too much if you ask me), I took every parenting class I could come across, and I only associated with people above me. I found MYSELF and in doing so I found my son! Many years later he is now 17 and a senior in high school, he’s off all medication (which was approved by a Dr.) and he’s still the most glorious pain in the ass and the love of my life!
I’m not telling you this for any kind of reaction, I’m just simply trying to explain why you are my hero! You are my superman when I feel like I’m slipping, and my spiderman when I need something to hold on to (yes, sober me is ridiculously corny, sorry). When we have bad days, which is often, I think “what would Diary do” and it never fails to make me stop and find the good moments. You have taught me that none of us are perfect, yet we are all perfectly us. You have made me realize that while, yes yesterday SUCKED, yesterday sucked in a beautiful way! You, for lack of a better term, are my rock!
So, from the depths of my heart, THANK YOU! Thank you for the guidance, humor, new perspective, and the knowledge that it’s okay to have bad moments or even entire bad days because those are just tiny pixels, that along with all the other pixels come together to form the most beautiful picture I have ever seen!
thank you for this. just … thank you. and congratulations to you … sounds like you’ve slayed some pretty damned big dragons. xo
Hi Jess, 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!
Molly, I’d encourage you to post your question on the Community Support Page so that others can weigh in with ideas. I’m sure someone has a script at the ready 🙂
I thought you would enjoy this 🙂
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?
Oh, man, this is so hard. May I suggest posting your question on the Community Support page so that others might offer some ideas?
I was just wondering what the first signs of Autism were for your little girl? How young was she? What did you first notice, etc? I would so much appreciate a reply in any way.
I love following you on Facebook and reading your posts!!!
Kelsey, give me a couple of days and I’ll do my best to get back to you.
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Best wishes and best intentions,
THANK YOU, THANK YOU, THANK YOU!!!!! Very , very much appreciated. That dang thing changes its settings constantly and we definitely have to be more vigilant. Thank you! Did I say thank you? 🙂
Happy to help! 🙂
I’m a mom who recently found out my son is in the spectrum. I just wanted to say thank you for giving me hope. I’m afraid of what the future holds, but your posts have helped with this anxiety tremendously.
Oh, Marce, I know the fear. I also know the joy, and I promise you will too. Hugs.
Hi I am from MA as well and I was wondering if you hired an advocate or got a free one through dept of early education.. Should I go as far as getting a lawyer? Do you have recommendations?? I’m lost!!
Angela, I did not. We relied heavily on our neuropsych’s recommendations and had him get on the phone with the team a few times, but other then threatening to bring a lawyer, we never actually had to get legal council. If you’re feeling lost or overwhelmed by the process, however, I would definitely seek assistance. I’d call Mass Advocates for Children to get some advice and references. Also, every town in MA is required by law to have a SEPAC – a special ed parents advisory council. If you haven’t already done so, I would definitely suggest reaching out the them for support. Good luck!
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.
Hi! I saw your post and I just had to comment. I think it’s amazing what you’re doing for your grandchildren and you’ve come to the right place to look for guidance and support. I would encourage you to post this same question on Jess’ community page because there are so many people there ready and willingly to help and guide you with these amazing children.
From experience with my own two children on the spectrum, the first and best place I went to was our local autism resource center. I don’t know where you live but I encourage you to seek them out. They can connect you with local therapists and resources to get you started with what the kids – all the kids – need.
And if anything, make sure to reach out for help and support for you too. It’s a magical road with our kids but it can be a lonely and hard one if you don’t find a village to support you, in person and/or online.
I wish you love and peace with your new crew.
I wanted to contact you but was not sure how. I am a teacher and I follow your Facebook and blog. Since I started I have a better understanding of children with autism. Thank you for sharing your life.
Thank you 😉
Hi, I just found your fb page a few days ago and love reading your posts. Your girls both seem amazing and you seem to handle things so well. I don’t know if you’ve posted about this topic before but I was wondering if you’d mind sharing when you explained to your daughter what autism is and if you think it helped her knowing. My husband and I are still in the process of learning about autism as far as how it affects our oldest and are curious to hear other peoples perspectives. Thanks for sharing these pages with us, I really do love reading your posts.
Amy, I think it’s absolutely VITAL to know.
start here ..
and then search the word “disclosure” in diary’s search box and you’ll come up with more. 🙂
Jess…. I just want to thank you. My 10 year old son has recently been diagnosed with High Functioning Autism and learning disabilities in reading and writing. I love reading your posts. They make me feel like I’m not alone. The one you wrote recently about the woman in the store as Brooke was acting up. I encounter that a lot with my son. The hardest part is educating others about how wonderful our children are. I’ve cried with you and I’ve laughed with you these past couple of months. I read your posts to my husband all the time. Thank you, thank you, thank you. You have helped me in ways you may never understand.
oh, lady, thank YOU. xo
Hi Jess! I love your page so much! You sound like an amazing woman! Wanted to write you this privately but apparently there is no way 🙂
I just wrote my first blog post ever (not autism related) and I think it carries an important message to parent to always get to the bottom of their child’s behaviour to see if there is something going on. Would you know a way to get more people to read it? It has been shared about 160 times on FB but maybe you can help?
Even if not, would you just reply so I know you have read my message? 🙂
Post is (it’s short) http://orthodoxsunflower.wordpress.com/2014/12/20/an-open-letter-to-my-mom/
Thanks for sharing, Helen. I look forward to reading it!
But you’re totally okay with your followers saying that someone doesn’t deserve to be a parent on your FB post and then blocking that person from seeing what people are writing about her? Thanks.
I can assure you that no one is saying anything about you. When you wrote “F-ck you all,” I deleted the entire thread. The comment was a clear and egregious violation of the stated comment policy, as well as the spirit of mutual respect and decency that allows diary to be a safe place for all of us.
I have been reading your Facebook posts for several months now and it is such an inspiration and eye opener. I have a small story to tell but would like to do it privately. How can I do this? Thank you
deborah, thanks for wanting to share. unfortunately, there’s really no way to send a private message, but you are welcome to leave a comment on the community support page using a pseudonym if you’d be comfortable doing it that way.
Can I please ask a question? I understand that Brooke has Autism, however, I wonder about Katie? Many times in the past you have posted that SHE has had a horrible night. Do you mind sharing?
Katie is neurotypical. Like all humans, especially the tween and teenage variety, she sometimes has horrible nights, though we try to keep them to a minimum. 😉
Thank you! I have a tween too, who is neurotypical, and sometimes her nights (or days) can be harder then my child with Autism! 🙂
http://fb-11.sfglobe.com/2015/01/27/she-has-down-syndrome-but-when-she-grabs-a-mic-im-speechless/?src=share_fb_new_33429 I thought you would enjoy, I know I did
I know you addressed this in a blog at some point……my daughter is 7 and our family trainer said to encourage her to be exposed to more age apporopriate things so when she is integrated she can fit in more. We try doing that but she LOVES Minnie, Doc MCStuffins….its hard to force something on a child. What were your thoughts?
search diary for “age appropriate” – i believe you’ll find something along the lines of age appropriate can kiss my arse. 🙂
Hi Jess, I apologize if this is an inappropriate avenue to propose this, but I wasn’t sure how to go about it. If you feel it would be a good match for you and Brooke, would you be willing to do a product review of tool to help develop fine motor skills and soccer skills? It wasn’t developed with the intent of being used as an OT tool, but it’s come to our attention it could be very helpful in that arena. You can learn more at http://www.0gsoccer.com.
I appreciate you asking, but I don’t really have the bandwidth to take it on right now. Sounds interesting though 😉
I can’t remember what made me decide to like your Facebook page, but I am so glad I did! I do remember the first time I looked at a picture of your daughter & thought to myself, this looks like my 4yr old will look at that age. So I began reading your posts, and I can’t tell you how your Brooke has helped me! My baby girl is Autistic and nonverbal, as well as beautiful and the reason my heart beats. I want to thank you & Brooke from the bottom of my heart for getting me through some rough days and giving me some light at the end of what some days seems like the darkest of tunnels. Thank you again for the inspiration!
Hi Jess! I’ve been following you on facebook for a while now and I thank you so much for your perspective. This is not so much a comment, but more of a plea for help. Something happened today. We recently moved into a new house, and we are slowly getting to know our neighbours, but it’s only been a couple of weeks. Neither my husband or I are good at making new friends, but we’re trying – trying because we want model behaviour for our son and also make a home for ourselves in this community. Today, my husband and son spent the last day of school holidays together. I decided not to join them ‘cos I needed some time on my own – to get some things done – or not as it turned out. I returned from an errand and a couple of the neighbourhood mums were hanging out – one of which I’d met before, one I hadn’t. We started talking about our kids – one has three kids, the other two. (I have just the one boy – I like to say because I went for quality not quantity). So for some reason, I felt it necessary to play the special needs card. I can speculate on why – cos I wanted them to know that I have challenges just like they do, but I feel like it ended up making me sound like one of those mums that can only talk about her special needs kid, and can’t see or talk about anything else. You know one that makes a big deal out of little things. But in many ways that’s the truth – helping my kids consumes a lot of my time. Don’t get me wrong, I’m not complaining at all – I love my guy – he’s THE BEST! I just thought given the opportunity, I would talk about something else – and kinda be a “normal” mum. Have you ever experienced a situation like this … felt like this … and the embarrassment that follows?
I think our own sensitivities bend the lens a little when we look back on how we interact with others. Telling people about your life (joys, challenges and all) isn’t “playing a card,” it’s sharing your reality. So the fact that in getting to know new people you shared a piece of your reality with them shouldn’t be a source of embarrassment – it’s just part of who you are. And they will, hopefully, see that it’s just one facet of your life. Just keep showing up. 😉
Now, that said, when we first moved into our neighborhood, there was a mini block party. At that party, one of our neighbors introduced herself as a professor of political theory at one of the nearby, and very exclusive, colleges. I had had a few drinks, and when she asked me what I majored in in college and I sheepishly said, “political theory” (about which I remember almost nothing) and she excitedly asked me who my favorite philosopher was, I literally said, and I quote, “if you don’t mind, I’m just going to walk away now. This conversation can’t possibly end well.”
Seriously. It took me like a week to walk on my street after that. I’m pretty sure that mentioning your kid has special needs ain’t that 😉
I just wanted to thank you. For being you and sharing your wonderful family with us. We are starting family based therapy this week and at thrones of initial intake appt the question is asked “if u had a magic wand what would u do to make things perfect”. And I thought of you and some of your posts…and told her I wouldn’t want to change who he his. Ideally I’d like him to be happy and healthy and wonderful. To learn and be able to use coping skills so he doesn’t get violent…but not to just change him. Not To just say I’d like him to be better. To act more normal. To just really not be him. I’m getting it. Slowly. He can be so loving and so in love with things because of who he is. He can be so funny and joyous at times or find the funny and joy in things I might have missed. He does things and acts how he wants to act no matter what everyone else says or does. I love him so much and don’t want to change him. I just want us sll to be able to learn hiw to help him cope and live happy on this world. And do our parts to learn how to understand and accept and be part of his world. Thanks for helping me see that.
love this, carrie. thank you for sharing. xo
Hi, are there any websites you would recommend to learn about autism?
From a mom of an 18 month old boy.
i’d highly recommend reading the blogs listed in my blogroll under “vital perspectives from autistic adults’. also, look at emma’s hope book – emma’s mom, ariane, has a wonderful and much more comprehensive list of resources. on facebook, i run a large community page that is a wonderful place (under ‘diary of a mom.’) i also suggest liking the page for ‘parenting autistic children with love and acceptance.’ they post questions from readers to be answered by autistic adults. it’s a great resource. and, of course, i’d say stick around here. 🙂 if you have further questions, please feel free to leave them on the community resource page so that others can chime in as well.
Somehow I’ve lost my diary of a mom comment place from my email. I really really really wanted you to know that I get it… The whole sunrise, sunset thing… And that is before my Xanax… Thank you for sharing.
I wanted to share an image with you I saw scrolling Facebook but couldn’t find an appropriate thread so hopefully you see this… https://www.facebook.com/teresa.vonderheidtleggett/posts/10205137000404701
Jess – i started following your page on FB because it was a meaningful page and often made my day just that much easier!
My youngest son is not autistic but rather has anxiety, panic attacks and depression that can be somewhat “crippling” for him. It all came about 2 years ago at the start of 5th grade. He called me at work after only being at school for a very short time. I quickly left work and picked him up…he was an emotional wreck. I spent the next 4 days with him at home trying to find someone to help him to little avail. My husband is self employed and took our son under his wing for the next month, comforting him and just “being” there for him. We could see that this was going to be a long term situation so I quit my job to advocate for him and do home schooling that year. We got him into counseling, they tried numerous meds (none that worked) and yet the start of 6th grade last year was a complete disaster for him. He could not handle the classroom setting as it set him into a panic attack and hyperventilating. The school was little to no help last year and if we put ALL the time together over that school year, I don’t think he enough went enough to count for one month!!! We just found out yesterday that his vision is worse than we had been told. In kindergarten we found out that his left eye was very bad (20/200). After many appointments (some as far as 4 hours from our home) I found a local Dr that got him to 20/80 vision. Yesterday he saw a local specialist that found a piece of the puzzle that so many had missed. He cannot “see” in the way most of us do. He goes in and out of 3 dimensional to 2 dimensional uncontrollably. He had never met our son and knew only of his vision issue. He explained that this issue is causing him great anxiety and being in a classroom setting or in busy public places will cause him to “meltdown”. My heart was initially broken because I felt bad that we did not know this 7 years ago but on the flip side I was filled with joy knowing that we have come across this amazing Dr who is very determined to help our son! I’m very uncertain as to what education he will receive this year as the school district will only do so much and home schooling is very difficult for the both of us. I continue everyday to push harder for his right to an education and to find a way for him to cope with this big world the best way he can.
I am happy that I came upon your blog page when I did and look forward to your posts each day. It helps to keep me grounded and know that that we WILL get through this, one day at a time!!
Keeping you all in my thoughts at this difficult time and…..thank you, for allowing us into your lives and to remember to smile and laugh as often as possible! 😊
I love that you share a slice of your life with us. I have followed you for years now. And reading the story about Brooke and your dad brought tears to my eyes. I have always tried to let my son show affection on his own. Without ever realizing that when I try to hug him or fix his shirt he moves away. I get it now. I never paid attention til I read your words. I feel so bad for my choices. But I know now that when he needs me I’m here!!
I wasn’t sure how to contact you.. I saw these Harry Potter potion ornaments and thought of Katie.
Might be a fun craft!
Thank you 😉
Hi Jess – I just wanted to let you know how much I appreciate your words. My four year old was diagnosed with a communication disorder and I lost my 60 year old mom this past July to ovarian cancer. My dad was so devoted and reading about your dad has really mirrored a lot of what we are working through. Thank you
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Thank you for your kind words. Everything that I write is public and may always be shared via a link, so please feel free to share with anyone you’d like.
I want to thank you for consistent cry for presumption of competence. My lovely A will get overwhelmed in a crowded restaurant and crawl into Daddy’s arms to sleep. In the bathroom, she freaks out at a hand drier. She rarely goes down a slide. My husband and I wanted to take my J, 6 year old brother, to the circus. I brought it up with my husband. We both were unsure whether to take her. The conversation went around and around. Do you think it will be too loud, do you think she will have a melt down, do you think she will try to leave, is it worth the money to find out. That was the tipping point. The conversation shifted. Were we going to limit her experiences because it might go badly, was finding out not worth $50, would we presume comptence or inability. There was lots of crying in the decision. Fast forward a couple weeks . . .
My baby love it and made it all the way to the finale. One act before the finale, she put on her coat and said, “I’m all done now.”
Thank you, just thank you,
Thank you for sharing ;). Love it!
Hi Jess, I wanted to privately contact you to ask you a question. How do I do that?
Unfortunately I don’t have a public email, so there’s no way to be completely private. You are welcome, though, to post a question anonymously on the community support page. I hope that helps!
So. I read your blog. My daughter is a lot like Katie and my son is Brooke …unique-ness and all . I know this is more than likely frowned upon but this site makes Hamilton buttons I remember your daughter liked Hamilton so I figured I would share so you could save for a nice surprise some time maybe . https://m.facebook.com/SewGeekAustin/photos/a.313860775368817.73181.311304765624418/1233568663398019/?type=3 sorry if it’s against the rules. Please keep being awesome:)
You & Brooke have inspired me in countless ways. In reading your blog, I have learned so much. It was here that I learned about presuming competence, about the importance of listening to autistic adults, about Rhema, and the Autism Women’s Network and their book(s). It was here where the germ of an idea started. I have started a “girls club” for autistic girls in my area. We have barely just formed, and already the feedback I’m receiving from families like mine (ours) is amazing.
I share this with you so you know that you have reached a community on the other side of the continent, in another country. I feel we owe you so much, and have no way to thank you for sharing your stories and yourself with us. I hope knowing the part you played in this endeavour can be part of that thanks. Our website is inGIRLSCLUB.com. Your blog is in our resources section, and you might notice, in ways small and not, how you’ve inspired us.
With thanks, with love. Vicky
Love, love, love. Thank you.
So eloquently written, yet firm and respectful. Thank you for being an example of love. Real love towards other human beings who deserve respect and compassion, empathy and support. I absolutely love your “Zero tolerance for intolerance” policy and would love your permission to use that phrase on my blog at momdevoted.com. I too have little tolerance for hatred and bigotry and am so inspired by you.
Thought you guys might enjoy the read. It shows despite a disability, kids can be world champions and Olympic Champions. https://www.understood.org/en/community-events/blogs/in-the-news/2018/02/09/skaters-with-learning-and-attention-issues-take-the-ice-at-winter-olympics