six years — or — no. hell, no. hell to the mothereffing no.

*

229528_7237699418_2710_n

Katie and Brooke

‘Sconset, 2006

*

Dear Mom who approached me at the play the other night (just before Brooke lost it),

I hope you don’t mind me reaching out. I’ve been wanting to get a hold of you.

You see, there’s something that I need you to hear. I know I said it the other night, but well, Brooke was starting to need my attention and you and I were losing the thread and .. well, this is important. I need you to really, truly hear it.

You were talking about your girl. And I was trying desperately to listen because something in your eyes told me that you really, really needed me to listen. But I couldn’t, of course, because the storm was coming, and, even though you couldn’t see it yet, I could sense the change in the wind. I knew.

So I couldn’t give you what I wanted to give you. And even when you said the words with edges so sharp that they cut straight through my heart, I couldn’t free myself to do what I wanted to do – to grab you by the shoulders and shake you and say,

No. Hell, no. Hell to the mothereffing no.

I tried. I tried to will you to understand the weight of my words.

Don’t let anyone do that, I said.

It was all I could manage without sending Brooke over the edge. If I’d shown any strong emotion in that moment, she’d have been done for. So it was all I could do. And it wasn’t enough.

I know that we barely know one another. I know that I may very well be way out of line in presuming the right to say what I’m about to say to you. But you came to me for a reason. You told me that you read my blog. You very sweetly told me that you admire me. I was grateful for your words. And they told me that you know me well enough to know what I was going to say. You had to know that all I possibly could say was, Hell no.

Because no one – NO ONE – has a right to take away hope. Not from you, not from your girl, not from any one of us who happens not to fit the mold. No one can look at your sixth-grader — or any sixth-grader –and tell you that “She’s not the kind of girl who will go the prom. It’s just not possible.”

Do you hear that? It’s God laughing at those with so little imagination as to cling to nothing but their lack of faith. I’ll show you possible, He says. And every day, He does. Again and again.

When Brooke was three years old, she was diagnosed with autism. Upon delivering the diagnosis, the neuropsych who had evaluated her looked into her crystal ball and told us that our daughter would never be comfortable around people. She told us that she would tend to eschew the company of others. That she would live alone. That she would always prefer solitude.

Every day since, Brooke — not us, Brooke — has shown us not just the wild inaccuracy, but the abject absurdity of that prognosis. And time and again we have been reminded of the peril of what might have happened had we believed it.

Six years later, my daughter LOVES to be around people. It’ s not always easy, and her interaction with them sure as hell isn’t always the one that society prescribes, but she adores company. When given the choice of a private gymnastics lesson vs. a class last month, she chose the class. Her favorite day of the school week is the day on which she has chorus and can sing in a group. She invited every girl in her class – plus a few – to her birthday party. When Katie and I returned from our night away this weekend, the very first words out of her mouth were, “I missed you.”

Because she didn’t have the skills to interact the way that the doctor expected her to, it was easier for her to assume that she didn’t want to interact. Easier, but not accurate.

Six years later, the good doctor would not be making the same mistake upon meeting our girl again, should she be blessed with the opportunity to do so. (She won’t.)

Now, I’m not real good at math, but I’ve added it all up and carried the one and I’m pretty sure that twelfth grade minus sixth grade equals six years. Now ain’t that something?

Six years for your daughter to show you the absurdity of trying to predict her future. Six years for her to prove to you the insanity of extinguishing hope.

Maybe she won’t go to the prom. A lot of kids don’t. Maybe she’ll choose to go to a different kind of prom, or celebrate the evening in her own way. Or maybe she will go. Maybe she’ll be the damned queen of the dance — literally, metaphorically, both.

Who the hell knows? She’s in sixth grade for God’s sake. And six years from now is a long time. A long time to learn, to grow, to put tools into her tool box and yes,a long time for the world around her to learn, to grow, to evolve along with her. But so too, it would be an awfully long time to lose, having already decided what she — or anyone — will or won’t do, can or can’t be.

So if I’m out of line, I apologize. But I can’t sit back and let anyone put our kids in a box fashioned from the planks, not of our child’s limitations, but of their own limited imaginations. Besides, if you really know me through these pages, as you say that you do, then I’m guessing that’s precisely why you told me.

Stay strong, my friend. And the next time someone tells you that your girl isn’t exactly prom material, tell them to call me, okay?

Hugs,

Jess

P.S.

DSC_0333 - Version 2

Same beach, same girls

6 years later

74 thoughts on “six years — or — no. hell, no. hell to the mothereffing no.

  1. Hell to the YES! I remember when Jacob was rejected by the special needs preschool I REALLY wanted him to go to for “not having enough social interest” and it broke my heart that they couldn’t see what I saw. Fast forward 6 years and he is in my face all day wanting my attention, going up to kids in the playground and talking to them (not always exactly appropriately, but sometimes skills lag behind desire, ya know?). Love this! Thanks Jess, once again, for beautiful inspiration.

  2. Such a strong and beautiful post. Loved the same beach and same girls picture. May god give you all the strength. Amen

  3. Hello Jess,

    I have a beutiful son with ASD. Two years ago he couldn´t catch a ball and someone told me he could never do Phisical Education. I leave you a video that I made of him last october. Never ever ever give up. Yes THEY can:

    • Your son is, excuse me for saying this, a bada**! I wish I could workout that hard and make it look so easy!
      Love this 😃

    • I was considered pathetic at such skills, and while I might still be at lacking, I improved. I put in a lot of effort at co-ordination. I was considered at the eighth percentile, I am now considered at thirty second percentile. I’m not at professional sports or anything, but I’m not at incapable.

  4. My daughter is 20 and her teacher asked me yesterday if she could go to the senior prom. It’s a couple years later than her siblings will go but she is going!! I was told she never would so in that moment I cried.

  5. ooooohhh, these doctors and their crystal balls…Amazing how they some how think their degrees come with the ability to predict the future.

  6. So many ‘experts’ try to protect us from disappointment by completely shattering hope…come alongside your children and they will blow your expectations away :). In the best way.

  7. We were told our son would never, walk or talk and would be a burden on our lives. He was just 4 months old at the time. At 4 when he was diagnosed with Aspergers, he walked into that appointment….so much for not walking, and used his voice to answer the questions asked of him. He did all these things later than his peers, but he did them all. He is now 11 and in 5th grade in a mainstream classroom. He is walking, talking, on the honor roll and amazing us every day. A burden on our lives? To quote Jess “Hell no!”

  8. I couldn’t agree with you more Jess. When I look at Jeff (28yrs old) and how far he has come it amazes me. Obviously, we did not have the technology there is today but he has embraced that and has made amazing strides. The awareness just wasn’t there..is he artistic???
    As hard as it was when he moved to his group home, (3 yrs. ago in June) it has made such a difference in how he has matured. It is so hard to look ahead when you are in the “chaos” but it can definitely get better, especially in light of all the research and awareness there is today. Believe me 26 yrs. ago when Jeff was diagnosed it was very hard to have hope, but our pediatrician, teachers, administrators, dayhab workers and friends helped us make the best life we could for Jeff. He has come a long way!! Hang in there and try to appreciate what you can each day…it is a journey.

  9. “Six years for your daughter to show you the absurdity of trying to predict her future. Six years for her to prove to you the insanity of extinguishing hope.”

    Yes

  10. I believe this was approximately the motivation for Thom Hartmann to come up w/ the hunter/farmer model of ADHD. It just doesn’t make sense to tell negative fortune-telling stories about kids- or adults for that matter. It makes sense to examine our expectations and quiet stories about what our children will be- and come up with new ones, appropriately.

  11. You are so awesome! I have only been following your blog for a few weeks now but you are just AWESOME! I think about my son and his future and I am choosing today to believe in all HIS possibilities! Keep writing! Your words inspire me! Thank you!!!

  12. This is a message all parents and more importantly professionals need to hear. Our daughter has DS, so has been facing preconceived notions since 18 weeks in gestation. We were told she would be a vegetable…that we were selfish for not aborting and making this child live a horrible life. That the worst thing that ever happened was the TV show Life Goes On that featured actor Chris Burke who has DS, because less than 10% of kids with DS will function at that high of a level. And that would not be our daughter because she had so many physical problems. Fast forward 8 years, if our daughter is a vegetable, it’s a chili pepper. She’s reading at grade level, has friends with special needs and without, and is a joy and inspiration to all who meet here. It’s not hope that causes problems, it’s expectation. We have no right to have or declare expectations for our kids….any kids. We can provide opportunities and support. We can be there for them. We can guide them and love them. But we cannot expect for them. We can’t expect for them to always be this way or not that way…because that is control. And we have no control in this life. We do not have the right to set limits or create goals. This isn’t performance review time; it’s life. And we have to take life one day at a time, as it comes, and with the hope that all we do this glorious and important day, will somehow touch the future in a positive way.

    • If our daughter is a vegetable, it’s a chili pepper.

      That’s just one thing about many that I LOVE about this comment.

      Simply LOVE.

    • I know this is 2 years later, but I needed to respond to this comment. I am new to this site and have been voraciously reading all the posts and comments. This is by far one of the best things I have ever read regarding expectations and hope. I am going to print it out and frame it, put it on my night stand so every morning I can read this and be reminded. Thank you Diane from 2 years ago 🙂

  13. My mama used to say, ” If you wanna hear God laugh, tell him YOUR plans.”. I believe that includes doctors. I was asked how I potty trained my son, on time mind you, I replied, “No one told me I shouldn’t have been able to.”. The day he was diagnosed I stopped them before they started telling me what he will and will not be able to do. I said, “I want a diagnosis not a prognosis because with all due respect to all your ‘college learnin’ you don’t know me or my son.”
    It burns my *ss when they say these kids don’t want to be social! Really, is that why my 14 yr old FLIRTED, and I mean winked,smiled and waved while saying “Hi”, at a table full of teenaged girls at a restaurant?
    So yes, shout it…..”OH, HELL NO!”

  14. This is you at your very best. I love it! Well done. And this makes my “If you only read SIX things while you are here” list. Maybe put it on yours. 🙂

  15. Don’t give up. Don’t lose hope. Don’t sell out.
    – Christopher Reeve

    Unless the person who uttered those words has a crystal ball, they should shut up. I am beyond outraged for this girl and her mother. No caring, compassionate human being would ever say such a thing – regardless of circumstance. Six years is a lifetime (literally in some cases) and no one, no one, should ever presume to know what will happen in that span of time. Not only hell to the effing no, but “WATCH THIS!”. We all achieve, when given the tools, to the best of our ability. Whoever said this is already a detriment to this child and will not provide the tools for her achievement. They can’t. They’ve already judged her and decided that they know. Despicable. To this mother: You know your girl. You stay strong and never give someone else your hopes and dreams for her. What will be, will be – but there is so much “being” yet to happen!

  16. Every time I hear someone put limitations on what my child can and cannot do I challenge them. I politely tell them to let him try. Every time he is given the chance he exceeds the expectations placed on him! Every single time.
    I find it baffling when people say autistics are not empathetic and anti-social. My son is very aware of people’s moods & tone of voice.
    My only expectations for my son are that he be a kind, hard working (in school for now), polite individual. Anything more than that is just gravy 😉

  17. To the mom and anyone else who needs it, I’ll offer the words our (apparently rare in his field) first doctor gave us: “There’s absolutely no reason why she won’t have friends, a job, a partner, or children of her own one day if she wants any of those things.” Anything is possible.

  18. Hell, no is right! Guess who’s gearing up to ask a girl to prom? That’s right. The boy who didn’t start talking until age five!!! Six years ago he was still crawling under the table in restaurants due to his sensory issues. Tell those people who tell your friend what her daughter won’t do to call ME too!! xo

  19. To the mom who needs it: Hope is choosing to believe. There is always hope, til our dying breath. I wish the best for you and your family. People tell me scary things all the time about my son too but they don’t -know- him. They don’t see the power of his heart and spirit. He has a beautiful future ahead of him even if it is never going to be what the mainstream defines as “normal”. Good luck out there.

  20. Thanks, Jess. My hope took a hit today when my Aspie kid got rejected by the “perfect” SPED school for him. I needed this reminder!

  21. and all this is why doctors like that aren’t our kids’ best advocate. we are! WE BELIEVE in our kids because we know them. WE KNOW THEM. and while many of us read blogs and don’t write them, i bet every single one of us has a story worth hearing.

  22. Hi Jess – I love this post. Love the photos of your sweet sweet girls looking like mini-versions of their sweet selves now. Love that your mom friend would reach out to you.

    I do wonder if God would laugh at people who were limited in their imagination of people’s futures and possibilities. I like to imagine God would be saddened, but not laughing “at”. Maybe he laughs at the thought of how much his flock has to learn. All of us. In peace and understanding. Not all of us have been blessed to know our kind of kids, who teach us possibilities are endless. If you approach with peace and understanding.

    • Perhaps more clearly stated, I see Him laughing at their proclamations, scoffing at the boxes themselves, shrugging off the concept of impossibility. Not at the people, but at the limited world that they attempt to create for those whose depth they clearly do not see.

      And sadly, from what I understand, this *did* come from someone who works with this little girl and should – really should – know better.

  23. My David didn’t talk until he was 3 other than saying “good good” and pointing and grunting. He’s 7 now in the first grade he not only talks, but reads, does math above grade level and can do things on a computer that I can’t even do. I have no doubt that if he wants to go to prom he will.

  24. I never want to be that professional who tries to predict what a child will not be able to do. I firmly believe that children with disabilities can accomplish whatever they set their minds to and will amaze the most skeptical of professionals with what they do.

  25. I feel compelled to add a bit to this….you see my son is on the spectrum and I have never had anyone tell me what he’d never be able to do. Just the opposite really, and I feel blessed for that. Now I say this because my oldest is neurotypical in every aspect that we can tell. Last month we got called in for an unexpected emergency conference, which was really an intervention…so they say. I was told by her teacher and the councilor (which I love to death) that my daughter was heading down a “bad” path and if we didn’t interveen soon, she might end up at the end of that path. They discribed this path with words like outcast and dark and gloomy. My daughter is in 3rd grade. While I believe they are being helpful and caring, I feel its difficult to tell what anyone will do or be years down the road. And my point in this little rant of mine, is that they’re not just children with diagnosises or completely ordinary or gifted or whatever the case may be; they are unique individuals whose hopes and dreams might be different than our own, but that doesn’t make them any less real. It won’t stop others from making rash conclusions about them either. What really matters is how you see them and how they see themselves!

    HUGS!

  26. I have an amazing doctor for my sons & he never said my Aspie son couldn’t do anything, just asked what was difficult for him & talked about ways to overcome them. It helps that his son is also an Apie with ADHD & he knows what my daily life is like. I am willing to drive an hour to keep this pediatrician because he not only helps & understands, but supports us. Every milestone, he celebrates with us. I cannot stress how wonderful & important it is to have a doctor as invested in your child’s progress as we are.

  27. If you have a stagnant view of your child’s future–can’t, won’t, never will, etc. Don’t be surprised if that is what you get. If you live each day open to suggestion, hope, possibilities, opportunities, your child will sense that and flourish! I choose to live positively, hopefully and determined. I surround myself with believers and supporters. Rarely can I remember anyone bringing negativity, intentionally, to my perspective. I am guessing they sense it just isn’t in my mindset and they stay away!

  28. hi all my little boy (well not so little size wise) was diagnosed about 1 n a half yrs ago (hes 6) he doesnt talk all he does is echos what he hears, we saw his consultant about 2wks ago and he infomed us that he doesnt think that stuart will gain any useful language meaning we could never have a proper conversation now as you can imagine this info floored me and i sat for hours wondering what the future would hold for my son after hearing this information and came up with nothing which scared me but reading your blog as lifted my spirits and made me realise that anything is possible if he never talks what does it matter he will always be my boy and i will help him in anyway possible too help him live his life in anyway he wants
    thank you jess you really are an inspriation n i lool forward to reading more about your beautiful daughter in her own amazing world xxx

  29. This is my first time visiting your blog and I’m hooked! I would also comment that why in the world would anybody be dissing any child about prom at this stage of the game. To wish away those 6 years of other important milestones by putting a prom in the front and foremost? It’s almost like saying ‘nah na na na naaaa’ because you can’t think of any snappy retort. I don’t know all the context, and I do have young boys (both who are dual diagnosis and one is ASD) so prom isn’t in my radar, but to throw that at somebody is just lame — REALLY lame. So for all you moms that get thrown a curve by some unthinking, insensitive lout, go get ’em. Our children might not be “typical” but they teach us something every single day. I don’t want to speed up time, worrying about something trite, and miss something important.

  30. Thank you…your article came at just the right time for me and my 16 yr old autistic son who is encountering more social awkwardness as he gets older… It has helped to restore my faith and to continue to seethe brighter side of the spectrum…

  31. The only limits on our kids are the ones we put there. Sure it might take some of them a little longer to get there but what an adventure it is to be helping them on the way! Hope will get you through the tough times . . . never let it go. Nothing is impossible; especially for a child who clearly has a loving mother who is firmly on her side. Keep going, Mama!

  32. My sister, Callie is 19 years old. She was diagnosed with autism at around 2, and my family was also told all of those horrific things. That she would never develop a relationship with anyone outside our family, that she would never enjoy being in public, etc. What I have learned being a sibling of autism, you roll with the punches (sometimes, literally). None of what they say can be true all the time. A year ago, Callie WENT TO PROM, with her boyfriend, Brandon, who is also a sweet angel boy among us. Yes I said it, she went to prom, in a Cinderella blue dress (her request, she also never called him prom, she called it “the ball”), and they had a blast. They did not dance, just sat at their table with my parents, and people watched. It was the most amazing night of their lives. Side note, they are still to this day a “thing”. 🙂
    Callie has blown us away time after time with how much she has overcome. I am incredibly proud of her, just as I know this woman will be of her daughter. Keep fighting the good fight!

  33. Our son is 6. He was our foster child since he was 8 months old, and we adopted him at 3 years. Somewhere in between he’d been diagnosed with autism. We were told the same hopeless nonsense as everyone else’s doctors seem to have said to them…. On our son’s 5th birthday, he was still in diapers. He was unable to dress himself. He was nonverbal, just grunting and pointing. In February he turned 6. He dresses himself, is potty trained, wipes his own butt (well, I might add), and washes his own hands. He talks nonstop (mostly only about things he loves – obsessively – Skylander Giants, and Thomas The Train) but I am rapt with gratitude at every rambling, even when others just want him to talk about something else – even for just a minute. I almost cry when he sees a tray of cupcakes and he says, ‘Mama, those look fabulous!’ …. or “this is fantastic!” and I remember, ONE YEAR AGO there was nothing – now this. ANYTHING is possible! He is proof of that every single minute of every day!

  34. Yes, Yes, Yes!!!!!!!! No one knows anything, unless it is happening now. Right now I am sitting on the edge of an Autism diagnosis for my son (meaning it has been mentioned but I have not had a formal diagnosis). However your story reminded me of something else. Almost 3 years ago my husband almost lost his life in a car accident. From complications he had a stroke. We were told he would never wake up from a coma and if he did he would be a severe vegetable. We switched hospitals and eventually he woke. At first there was not much promise and we were told not to expect much. Then one day everything flipped and he was really awake. Today he is 98% the same as he was before.

  35. Thank you, for the very inspiring words… I know what and sure everyone else can agree with me that at some point that we all feel fusterated with others who fail to give our kids a chance. I have a 12 year old son who has PDD-NOS. He doesn’t understand peoples facial expressions, or when someone is being mean to him. He thinks they are just playing around with him even after they beat him up and then tell him Oh I was just playing around. And the kids knew this, so last year they would hurt him BAD and then tell him Oh I was just playing with you! (two black eyes and a powerkick to his genetals is not playing around, he was so badly brused from the mistreatment. When I told him that it was against the rules to let anyone hit him, that when someone did he needed to call for help) Of course it didnt make a difference to the teachers becuase they hated me becuase I was fighing them tooth and nail to get him moved to classes that would work for him.
    But because he didnt qualify under their testing for autism he wouldnt be getting the special education support he needed.
    Needless to say I took him out of public school this year and I am homeschooling him. I love K12.com for my students. This is a school I would recommend for any child.

    • I read your story and cried.. I did the same with my son took him out and homeschooled him! He is now 16, in the national Honor Society and is an absolutely Wonderful young man! The schools are a business unfortunately.. If your son was diagnosed “officially” they would have provided every service they could think of because they are given money for certain diagnoses which they did with my son…What I found was happening is they weren’t allowing him to fail and try again, that made them look bad. as the students must meet the goals in an iep. If they aren’t met they add more to the IEP to cover their butts as a result my child didn’t learn a gosh darn thing. And they would call him stupid and lazy. Which caused my child to withdraw even furthur into himsef. You have made the best choice for your son! Do research, learn a good teaching method that your child responds to! Books and desk sitting isn’t a requirement for learning! If you are doing K12 you probably have found the best possible scenario for your child! My son has one K12 for 4 years! Go Momma!!!

  36. I love your article! I’m not one to use profanity but I understand your passion. I have a set of twins on the spectrum. My son is speaking in sentences now. My daughter the more severe throw her arms around your neck wanting hugs and kisses. She can also now nonverbally communicate what she wants. Its a great life and I wouldn’t trade it for anything. Easy and Normal are not what we are. Our kids have autism and that’s ok because they are just as full of love and just as smart as kids who don’t have autism!

  37. Thank-you! You just helped me pick myself up and dust myself off. Nothing is going to take away my hope! I was meant to see your blog today on facebook, you’ve got a new groupie now : )

  38. When my son (now 23) was first diagnosed with Autism at age 6, we were given a long list of everything he would “never” do. Must be the Irish in me, but I love to prove people like that wrong. I set to do just that. How dare some guy in a white coat tell ME what my son wouldn’t do in 5 years, 10 years…etc. He now lives in a group home, works part time, plays soccer for Special Olympics, knows every 80’s song ever recorded (and has a HUGE cd collection) and can read and write. He loves being around people (clunky as hell at it, but loves it) and is a virtual GPS. If he’s been somewhere he knows exactly how to get there again. It wasn’t easy of course. Years of therapy, one on one time, battles with schools and more IEP meetings than one person should ever have to deal with. But I would do it all over again. No one has the right to determine the future of another. Even I couldn’t do that. I just knew that I would do everything in my power to make sure my son was given the opportunity to be everything he wanted to be.

  39. my son who will be 9 in a few weeks has gone to 2 different schools. 1 that works extra hard to help he accomplish everthing he wants and needs to in school and another who after a total of 8 hours(2 different days) said my son was not capable of being in a “normal” classroom… I told them that they were not a school I would ever send a child to told them how backwards thinking they were. took my son and put him back in school A best decision ever. My son can do many things and if given a chance he will amaze you. I know this because he shows me every day how amazing he is.

  40. Six years ago ,my son was nonverbal,in diapers,wouldn’t follow directions.Today ,he is completly verbal ,potty trained ,and in the third grade ,mainstreamed ,no IA ,he is on the Honor Roll and took part in the Spelling Bee at his school. So I say ,”HELL NO ” never ,never ,never give up ( hope ) .it is ALL I had to hold on to in the beginning .

  41. Now take that in your pipe and smoke it. I am amazed by all the comments above. My 7 yr old son is autistic and I never tell him never.

  42. I have a handsome 16 year old son. He was diagnosed with ASD when he started first grade. He was struggling in school and would isolate himself from the other kids and he would run back and forth flapping his hands all excited about whatever his little mind was thinking about at the time. The school special needs teachers told me he would never really be able to participate sucessfully in school. As a mother bear that I am I went into research mode and researched heavily for six months so that I could make educated choices about my son… The school gave him an IEP to follow and every year he met, passed, and exceeded the goals set for him. Due to social problems (bullying) which the school didn’t help with, I started homeschooling him in 6th grade. Needless to say with deep pride in my son, He is in 10 th grade, no longer has an IEP, Is doing 12th grade academics and some AP classes. He is in the top 10% of all the students in his age and grade, and has been in the National Honor society for two years. He has a great group of friends both with ASD and without ASD. He is a role model for other teens with ASD. He is a happy, well adjusted, typical teenager with typical teenage problems. He has won numerous awards in the clubs he belongs to. He still has a day where he just says, “Mom this an off day” and we just hang around the house and watch movies on those days. This happens about once a month or so. Then he overcomes himself and hops right back on the horse! He amazes me daily with his strength and courage!!! When I finally decide to grow up, I want to be just like my son!
    The long story to suggest the following:
    1. Don’t let anyone label your child!(incuding teachers and doctors)
    2. Don’t you label your child!! (Doing this makes it ok in your mind, if your child doesn’t at least try something new.)
    3. Never stop your child from trying to do something new because you think they can’t do it or think that failing will hurt them. If they fail and want to try again, let them. Let them fail 10 times, this produces a stubborn strength that will follow them in every aspect of their life. And guess what…They will eventually suceed and the feeling of sucess and pride that they have is a wonderful thing to behold!
    4. MOST IMPORTANT: DON’T LET GUILT OR PITY CAUSE YOU TO TRY AND FIX ALL YOUR CHILDS STRUGGLES!!! Let them work out the ones they can on their own. If you solve everything for them they will never learn how to problem-solve on their own! Love means standing back and watching them learn themselves. As hard as it is you will be doing more to help your child this way then to rescue them every time!
    5) NEVER in the presence of your child use ASD as an excuse for bad behavior! They will learn early how to use this information to their advantage! I know mine did early on and a wise person pointed out to me that I did that… I am grateful to this this day for this eye opener.
    6) You can love your child the most by loving yourself! Don’t feel guilty, don’t let depression overcome you, and when you reach the point of just breaking down, look at your child, and think about the struggles they will face and do face everyday…don’t let you mom and Dad be another struggle that they will have to overcome. Engage them when you are overwhelmed let your soul connect with theirs. You may think that you can’t do this.. You can!!!
    7) I should have put this first; If you are married Always put your marriage first! Marriage is hard enough to nurture without the added stress of an ASD child! Together as a team, put an extra added importance to this! Be deliberate in spending time together! Dad, you play a big part in how your wife is doing… protect her and care for her as she might want to bite your head off some days..that is not the time to flee for your life, but the time to draw her close and take over what needs to be done and order her to lay down, take a bath, or send her to her Mothers house for the day. DO NOT TAKE NO FOR AN ANSWER!!! It’s alright if you’re not sure quite what to do, You’ll figure it out, after all, your wife did it!! Tell her you are amazed by her every day!

  43. Hell no is right! I refused to go to THE psychologist that everyone recommended who seemed to give whatever the Flavor of the Month diagnosis was trending at the time. In two hours this person can predict my son’s future? Hell no! I found a wonderful psychologist who conducted my son’s evaluation over a period of several days. Some days he would cooperate, some days he wouldn’t. On the days he did, it was very apparent there was a lot more inside my son’s head than some check the box test could differentiate. When she told us the diagnosis of PDD-NOS, she reminded me that “He is the same little boy he was before you walked into this room.” Those words have stuck with me for years. A label is a group of letters strung together to form a word. My son is a loving, happy, incredibly bright boy and is capable of anything he sets his mind to. I have no doubt had I gone to THE psychologist, she would have told me no prom king, no football star, no college scholarship, etc. Until these docs invent some magic crystal ball they need to stop trying to predict our children’s future before a group of moms end up throwing sugar on them and melting the whole lot.

  44. OMG! bravo! amen! anything else you can think of! i’m currently fighting tears typing this!(and i’m a 37 year old man)
    i’m the father of a 5 year old son with autism. this is so spot on, i’m speechless!

  45. I don’t know if “the mom” will see this, but I wanted you to know that my best friend’s autistic son presented his older sister to the school as a member of the homecoming court looking regal and so proud of his sister. He then went on to be homecoming king for his class and attended the homecoming dance in the new suit he picked out! There aren’t many senior boys who are interested in buying a suit. Ben lost his Dad the past year and each day I continue to marvel at his care and consideration for his mom. Alot of the character comes from patient, bear-mom like love. Don’t give up and NEVER accept the garbage talk that comes your way. No one is living in your home but you. They don’t know what either you or your daughter are capable of in your lives!!!

  46. I have learning disabilities. When I was a sophomore in high school my LD teacher told my mother and I if I tried really hard – I may (just may) get accepted into the local community college. I walked out of the room in shock (really, was I really that bad?). I was fighting off tears – but my mother was fuming. My mother told me not to listen to that teacher and immediately went to the principal and pulled me out of the LD class (not just this specific teacher – all LD). But that comment has stuck with me for 20 years. It reminds me never to listen to the negative – reach for your goal. I am proud to say I have a batchelors degree in Graphic Design. Now my 3.5 year old daughter has ASD – and no one will ever tell me (or her) what she will not be able to do. In my head I think of the future and worry – but I come back to that teacher and I know that no-one can predict the future.

  47. I remember slow dancing with a guy at my prom who had autism named Max. I was prom queen that year, and of all the dances I had with that night and throughout my high school years, I remember my dance with Max the most. Max was such a blast to dance with! He spun me around, we did a little free style, and at the end, he even dipped me.

    I’m not sure who said it wasnt possible for autistic kids to go to prom. Its a crime for any parent, educator, or student to think they shouldnt get that memory. There is no ‘type’ of child that deserves to be at an event that marks an important tradition that all teenagers should have the option of attending.

    At my high school, our Choices Program (a program focused on special education needs) not only attended prom, but the kids in that program were the life of the party. My junior year we had a big circle of people dancing and one boy named Bobby (who had a mix of Autism and Downs) was in the middle of the circle busting it out next to one of our hip hop dancers. That was the first time I met Bobby, but after that we always said hey to each other in the hallways and he always asked me how my running was going (I ran track in high school). Sweetest guy ever.

    I loved how inclusive our high school was. I only wish it was more inclusive. Sure, there were some behavioral problems…but its high school. Every kid has a behavior problem- ask my parents.

    Its poor logic to say that because someone differs in their behavior, they should be stripped of experience normal rights of passage. The real issue is expanding the awareness of other students and educators so that they understanding that the standard of everyone behavior should be inclusive, understanding, and incorporative of ALL peoples.

    Not only should kids with autism be able to attend prom, they should be more included in school events like assemblies, sports events, etc. Every public school should have programs that address the needs of children with special needs and incorporate these children into high school culture.

  48. Love it! Your blog popped up on my newsfeed a few weeks ago. I think it had been highlighted by Autism Speaks, not sure, but I am so happy it did!! I love reading your blog and love the way you convey the respect you have for your daughter. I too, have an Autistic daughter and a “nuero typical” daughter. I feel like I can relate to so many of your life events. Thank you for sharing! I just started my bloghttps://pagesfrommyjourney.wordpress.com/ less than a week ago. A handful of people had encouraged me to do so. But if I hadn’t have come across your blog I am not sure I would have. I want to do my part in impacting the world for my daughter. Thank you for inspiring me to do so! I look forward to keeping up with your blogs!

  49. That’s quite silly. Because WHY IS THAT EVEN A BIG DEAL? I mean, yeah, it’s a fun fancy thing, but really not going to prom or going to prom is really such a tiny insignificant piece of your life.

    And 6 years is a long time.

    And I’m autistic and I went to prom (and admittedly, I spent most of the time dancing in the hallway outside the actual room, because NOISE, but it was still quite enjoyable and I had a nice date who didn’t mind that at all).

    And really, some people like things and some people don’t.

    And just because you are autistic doesn’t mean you can’t be around other people or even that you don’t enjoy it. It just might mean it is REALLY TIRING sometimes but it can still totally be worth it if it is something you want to do.

    (And also disclaimer, all this “being autistic” is really only from my experience, and I’m sure it is different for other people, too, but everyone can do different things because, you know, they are different people.)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s