Monday, March 28, 2016

Why Autism SuperMoms* Make Me Feel SuperBad







(originally written & published on March 28, 2016)

I've been hearing about autism super moms lately. 

Moms who single-handedly thru hard work and determination dragged their autistic kid from point A to point B

Whether that be from nonverbal to verbal

Or from low functioning to high functioning 

Or from a special class to a mainstream class. 

Or from high functioning to declassified. 

These moms are out there. And they feel proud of their accomplishments, as they should be!

And some of them write books about their kids, as they should!

And go on the public speaking circuit, as they should!. 

And they inspire many young autism parents, as they should! 

However, for me, for a dad of a 12 year old still severe, still non verbal, still in the all autism classroom son, these super moms sometimes make me feel like crap. 

They make me feel like I didn't do enough, that I'm not doing enough. 

And I know I'm not the only one that feels this way.

He's a couple of examples from the recent past. 

Example #1
I went out to lunch with an old friend from HS who I don't get to see very often.   He says that he says that he reads my blog often.  

And his sister has a daughter with autism named Beth and he was saying things like "My sister is amazing with her. She pushed her.  When Beth was younger she couldn't talk and she would hit herself. But because of of my sister's hard work and working with her and advocating for her she's now 9 years old and talking and in a regular classroom."

And I'm sitting there thinking "why is he telling me this?  Doesn't he know it's making me feel like crap?"

Why does it make me feel like crap you ask?

It's not because this kid progressed so much. I'm thrilled for his niece and their family!

It makes me feel like crap because it makes it seem like without the hard work of this mom this kid would've ended up just like mine. 

So maybe we didn't do enough.  Maybe if we pushed our son harder when he was younger or advocated for him better to get that 5th speech session per week or that extra hour of ABA per week he'd be so much better off right now. 

Now if my friend said, "yeah she really responded well to ABA."  Or "she went on the GFCF diet and it made a huge difference." I would be fine with that. 

Jealous maybe, because we tried ABA & the diet and they didn't work for my kid...but I'd be fine with it...I wouldn't feel like crap. 

But the way it's presented as this super mom single handedly thru determination and hard work dragging her kid from severe autism to a mainstream classroom that makes me feel like crap. 











Example #2
I did a speaking engagement at an autism conference a couple weeks back and Temple Grandin was the main speaker. Temple Grandin is amazing. However a big part of her story is that her mom saved her. 

And for the 1950s it is safe to say that her mom did save her.   If it wasn't for her mom Temple would've been institutionalized. So you could say that Temple's mom was a true autism super mom who thru sheer determination brought out the best in her autistic kid. 

And at that event I was speaking at with Temple, she was telling stories about her mom forcing her to do things she didn't want to do to strengthen her. 

"My mom told me I could spend a week at my aunts farm or the whole summer at my aunts farm. Not going was not an option. The idea of not going was never presented to me."

And I'm sitting there blown away by her speech, while at the same time thinking "I wish my kid had the reasoning skills and the perceptive language to understand a choice like that." 

And then I got up and did my speech and started it with something to the effect of "Temple Grandin is amazing.  She is the shining example of what we aspire all of our autistic kids to grow up to be.  Self sufficient autistic adults.  However, the harsh reality is that no matter what we do all of our kids won't grow up to be Temple Grandin.  I'm here today to talk about what life is like with a kid on the opposite end of the spectrum."

And I had several moms come up to me afterward and say "Temple speech was inspiring but it didn't apply to my kid.  Your speech was just what I needed. In my autism world I'm not worried about the types of issues that Temple talked about.  Like forcing my kid to play outside vs staying inside playing video games all day.  That concept isn't even on my radar.  I'm just trying to make it thru each day without my kid trying to injure himself or trying to potty train a 7 year old."











Example #3
I will be speaking at an autism conference soon and there are two keynote speakers. The first is a high functioning autistic adult who I've l seen speak before and the second is a mom who wrote a book about the way she brought her asd kid from point a to point b.  Her book is described as "the powerful story of one mother’s love and her stubborn refusal to give up on her child."

And I don't want to mention their names because they're both great speakers and they both have amazing things to say so this post isn't about bashing them.

However if I'm in the audience and I've got a kid older than, I don't know lets say 9 years old, and my kid is still nonverbal, still banging his head against the wall, still not potty trained and I've tried lots of stuff with him and didn't give up on him, will these speeches inspire me or make me feel like crap?

I'm not saying these people shouldn't be out there telling their stories.   There stories are full of hope and possibility.

I don't know what I'm saying exactly. 

I just want it to be known that it is possible for a parent to be a super mom or a super dad and be everything and do everything for their autistic kid and yet the autistic kid doesn't make much progress and is still nonverbal. 

That's why I think my blog has been so successful and why I'm starting to book a lot of speaking engagements. I tell a story of parents who tried lots of stuff and it didn't make things much better.   And I think there needs to be more me's out there.  

More people like me telling their stories of what life is like when you feel like you are an autism super mom or super dad, an autism warrior,  and yet despite all your best efforts and your all your super heroic hard work, your kid is still severely autistic, non-verbal. 

Despite all your tenaciousness and your "stubborn refusal" not to give up you're still not able to able to bring up your kid's functioning level from point A to point B.

Can we all admit that not every kid with autism has the potential to be Temple Grandin?  Not every kid with autism has unlimited potential?   That doesn't mean I've given up on him.  That doesn't mean we are not trying new things all the time.  We are trying a new teaching protocol right now.  But maybe all my heroic super dad work got my kid as far as he can get. 
I say in my presentations that I think that the autism miracle stories (like Temple and the supermom author) are rare, but they don't seem rare because many times that's all we read/hear/see about autism.  Why?   Because that's how the Internet works.  

So, I guess maybe I'd be totally ok with all these autism super moms and all these autism miracle stories if they all came with a disclaimer.  The same disclaimer they put in tiny print on late night infomercial diet and acne medicine commercials.




*RESULTS NOT TYPICAL

I think I'm going to end it there.  And as I'm re-reading this post before I hit publish and i see all those question marks in it, I fear that this post is going to come off that I'm angry.  And that is not the intent here at all.  My intent here is to make all the parents of kids like mine feel ok... to make sure that they realize that if you are doing all you can for your kid and your kid is still on the lower end of the spectrum, that's not your fault.  

Maybe the Temple Grandin's of the world and the Carly Fleischmann's of the world and the Ido Kedar's of the world are the exceptions to the rule... maybe their results are not typical and your kid's slow or no progress is typical..

Maybe it just is what it is...

THE END
-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



48 comments:

  1. I would say you are normal! We as parents have to remember that no matter which end of the spectrum our children are on; they will make progress on their own timetable. That might be days or years. What I find funny is that we as parents are so quick to teach our typical children that not everyone will work at the same speed or learn at the same rate but beat ourselves up over our autistic kid's progress. I think the best conferences are the ones that offer something for everyone. Hope is wonderful but knowing that you are not alone in the place you are at in that moment is priceless.

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  2. Ok I never comment on your posts, but I am going to comment now, and NOT be anonymous. People need to realize you do not have an typical autistic child. I HAVE A TYPICAL AUTISTIC CHILD. He was moderately autistic and language delayed, and through early intervention, years and years of therapy, dietary intervention and an above average elementary school in our district, yes, I pulled him from special ed to mainstream, now almost un-detectable. Good for me. However, unlike The King, my child, Carly Fleishmann, Ido, your friend's sister's daughter, etc etc, do not have the additional burden of intellectual disability. Autism is Autism. intellectual disability is what it is. It is very likely and unfortunate that The King has both of these compounded by his epilepsy. Do NOT ever feel bad. You did everything you humanly could, just like I did, just like they did, however, as I said, our autistic children do NOT have a compromised intellect. They responded differently to the interventions we've all tried. How DARE people say anything to you about this. It's like someone telling the parent of a Type 1 Diabetic "well, my sister's friend cured THEIR kid's diabetes with diet and B-12 shots". Then you've left wondering if you could have done more. Stop it. You're amazing, and the King is lucky to have parents who put HALF the effort you do into giving him a great life. And I bet he would thank you for it if he could.

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    1. I agree with what you say except your opinion that "typical" autistic people don't have intellectual disability. The fact is, a great number of people with autism do. And before Asperger's was included in the ASD diagnosis, even more did have intellectual disability. I'd say based on the 1980 DSM-3 definition, almost all did. The reality is ID is very common in the autistic population, excluding the Aspie crowd. So perhaps the King is typical, and yours is not. It doesn't really matter except we both know the trajectory of a kid with ID is much different than one that doesn't have it. Personally, I think autism+ID should just be called something else... or else autism-ID should be called something else. So while I agree with you in principle, I think we ought to be careful; there are many people who play the "purist autism card" and explain that autism is wonderful and ID isn't, but then conveniently forget they are so frequently co-morbid many people don't get why they are separated at all.

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    2. Mm, Stacy - no such thing as a "typical" autistic child! They're all so different!

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    3. Mm, Stacy - no such thing as a "typical" autistic child! They're all so different!

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  3. THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU!

    This is exactly part of the reason I've slowly withdrawn from message boards and support groups because they're all the happy shiny supermoms/dad who've, as you said, have toiled tirelessly and have managed to "fix" or "improve" their child. Meanwhile, I'm trying to potty train a 6 year old who only speaks in echolalia - unless he's hungry, then he'll ask for food.

    This is why I love your blog. You talk about the autism I'm familiar with - the autism we don't like to talk about - this is the 'opposite end of the spectrum' as you so aptly put it. We're not all raising Temple Grandins. I can't even tell you how many times I've said that to people.

    And you're absolutely right, you read these stories and you feel like "well I'm just the worst parent that's ever existed."

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  4. You have hit the nail on the head. There are many, many, MANY more families who do not have these "come from behind" stories of success. And it's not for lack of trying. I think I read a book or two along those lines when my kid was small, and while they were encouraging at the time, looking back they did not help me in my particular situation. They did exactly as you said -- made me feel that I wasn't doing enough for my kid, that I was a slacker. The only book I enjoyed was Temple Grandin's "Emergence..." which was more biographical. I admire her greatly.

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  5. Truth! I try with my autistic son, I really do, but it's not up to me. Do I push? Yes. Do I just let him be himself? Yes. When he makes progress, it's not because of me. It's because of his own timing....when he was/is ready. I never tried gluten-free and I never tried ABA but I refuse to feel bad about that! You keep doing your own thing, AD, because you're doing it right for your son. We can only do so much and if our kids are not ready, they just aren't ready. These parents who have pushed only got results because their child was there - ready to take the next step. Keep being you!!! Much love!!!

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  6. I get this. We do what we have to do and it is always enough. You know your own child. What everybody else does may not be suitable for your child. My son has made great progress over the years and yes, I will say that most of it was due to me, but he will never live on his own, he has speech but conversations are next to impossible. It took YEARS to get him where he is and it is not anywhere close to where I can die in peace and not worry about what will happen to him. I do not believe that I could do any more than I have done. Everyone is different.

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  7. You're right. And you're right to keep telling this story. It's important to educate these people who are well-meaning but not that well informed. Please don't be sad. I'm one of the mothers who saw a completely unpredictable outcome, against all the early prognoses. But I promise you that I had no goals in mind when I set out on this long journey. I was open to everything. For a long time the future looked non verbal. If he had remained non-verbal and if all the symptoms and health issues had stayed the same, I'd still have had this full on focus on building the very best life for him, the same as you are doing. He was my amazing child when I had no idea what the future held. I didn't really care about anything except his happinesss and well being. So please keep telling the stories. And don't think that everyone whose child developed differently attributes this to their own parental merits.

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  8. Either way weather you have good results in progress or not the way you guys care for the king and for each other is gold and makes you both rockstar autism parents. Love and care is not to meassure in progress its to measure in sticking together and hanging in there. Thats your successtory that i respect so much!

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  9. Either way weather you have good results in progress or not the way you guys care for the king and for each other is gold and makes you both rockstar autism parents. Love and care is not to meassure in progress its to measure in sticking together and hanging in there. Thats your successtory that i respect so much!

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  10. My pet peeve: The media, online, etc always talks about autism. All the autism centers around etc. I am a special ed para with life skill students and my sister is developmentally delayed, non verbal, epileptic, CP, and anxiety.
    What the media etc seems to forget is there are others beside someone who autistic who are non verbal and need care.
    No offense for those with autism but my sister like many others are inn the same boat.

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  11. Your entry reminds me of an encounter I had recently with a speech therapist who said: "I'm sorry, (your kid -age 12) isn't even at an 18 month old level." The thing that annoyed me most wasn't the arbritary 18-month level it was the "I'm sorry," as if that's news that would devastate me. Listen, we've been it long enough to know it doesn't matter what level you would like to place him at. I'm not sorry he's a happy, healthy boy. I'm not sorry he enjoys school and being with people (even if he doensn't interact with them). I'm not sorry he makes the incremental progress that he does as long as it's progress (and often that's even stagnant). I AM sorry that there is a need to categorize him and place him in a useless artifice of a level that does not help the parent, but only serve some sort of data documentation. We all do what we can to for our kids. It's not being a supermom. It's just being a parent.

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  12. I call myself a "SUPERMOM" only because I advocate, believe in, and love my autistic child. He is where he is at any given moment. Some days a little better, some days not so much. I haven't changed him.... But I have supported him.

    You and Wifey, Frank, and Temple Grandin are MY HEROS. You help me go on when he eats the couch. You make me laugh when we have to call cheese "yellow stuff" because he has developed a sudden aversion to it.

    I am a supermom, just like the rest, because I support my child with Autism, not because I changed it.

    We never give up.

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  13. you are doing a GREAT JOB - all the kids are different - and some will progress when we push and some won't...I do brain scans on my child through an ND (natural doctor) to see where her brain needs more development) but everyone don't have access to that. She still is not talking as much as we would like but its better than 3 words she used to have. You have to do whats right for your child. My child does not have seizures and she is mild to moderate they say - yet she is right brain and still may never talk fully like we want her too - or even realize she needs to. So I HEAR YA....

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  14. All autism parents have superpowers. It's automatically bestowed upon us, during the diagnosis coronation. Sara www.hiyah.net Free Educational Software for Autistic Kids

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    1. I think I missed the coronation because I was busy filling out paperwork and attending meetings. Do ya think there is a catch-up class for that? I always wanted to be an autism princess.

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  15. Be kind to yourself! As you know autism is such an individual journey for every family, sometimes I think irrespective of what therapy/diet/time you put in autism will follow the course that it was going to follow for your child; so comparing what one autistic child is doing against another is really like comparing apples and oranges. Despite being non verbal and not toilet trained I am sure there are amazing leaps and gains that you and your family have made that should be celebrated. This is no way takes away from the hurt you feel when people make "well intending comments". Really the "super mums/dads" are the people who remain strong, get up every day and continue to support, love and accept their child just as you do.

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  16. I think there are some kids that no matter how much help an money there parents put into them to help them they will always be severe .i have a few like that .then me an my friend who were once deemed to be low f an stuff to are now HF .but I'm not like temple I'm not like those with As I still live with my parents an will allways need help
    we are all diff .it depends on how severe the kid is an if the child has MR along with autism some of us fo an sone don't .i think you do great with him

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  17. Yes! Yes! Yes!!!! My husband and I have the exact same feeling and thoughts!! Thank you for making it real!!!

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  18. I read your blog post out loud to my husband and I started to cry while reading it to him.
    We have been in that boat so many times...damn it, we run the ship.
    We had our son in a special school for autism and even among other autism families, there is this undercurrent of,"what are you doing for your child and why aren't you doing more."
    I see that happen alot in our community, this idea that if you throw your kid in every kind of program out there, spend every last dime you have you will have a success story. Many times they don't take the time to consider that you may have tried it all, or maybe you don't have the monetary resources to try a compound that costs you $200 bucks to make every month. They don't consider that sometimes you need to get off the Rollercoaster that Autism treatments can be, take a long breath and just try to enjoy your child. They don't consider that while you are not taking your child everyday to some therapy your not being neglectful...your trying to connect with your child and trying to find a balance.
    I think you are absolutely 1000% right when you say there are a lot more of us out there who see little to no progress with our kids than there is success stories or the cured stories. I wish in that aspect my kid could be one of those cured, mainstreet in school stories but chances are he won't. In accepting that doesn't mean I have given up hope it just means I'm willing to try things but I'm honest with myself anout it. I'm also honest with myself about how much I can stretch this kid. He has his limits just like us all.
    I don't get angry when family or friends tell me about their friends kid who was non verbal and now recites Shakespeare. I don't get angry when they tell me of the latest new pill/therapy/book/doctor.
    I get frustrated. I feel like crap and so does my hubby.
    I thank you for writing this and it took courage for you to write it.
    Just keep on keeping on...and keep on speaking your truth.
    Karen L.

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  19. You are reacting normally. I say, though, when I am complimented on my child's progress, that it's through THEIR hard work, not mine. My son, for example, was non-verbal until this year (he's now 8). HE, in my opinion, made that progress, I didn't. I just try to get them to the right resources - the rest is up to them.

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  20. Love this! Thank you. It's like saying "We fought and fought for my child to beat cancer and now they are cancer free!" As if the parent of the child who didn't beat cancer should have just tried a little harder??? Warrior on!!

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  21. I feel that.. regardless of how much those moms worked soo hard on their kid.. they would have learned to read with or without their parents help.. it was just how their brains would work..yes of course helping them is going to well.. help. I often feel like crap.. had I been able to afford 40 hours of ABA therapy when the dr prescribed it at 1 she would be perfect now.. fact is.. probably not. 1 there were no ABA therapists in Oregon at the time.. and 2.. I'm not rich. It is frustrating when people act like they did all the work when in reality their kid was just less damaged from whatever. My kid will also never be on temple's level

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  22. People with aspergers/high functioning autism and that have children with them have the TIME and ENERGY and resources to write books, spout off on the internet and make it seem like (and campaign HARD to do so) that autism is no big deal. The 70% that are Intellectually disabled and severely affected.. are just lucky to be alive.. and barely existing. They don't have time to write books and campaign and pass laws... we have butts and walls to wipe. And the parents that are killing themselves and their children are getting labeled as crazy instead of what they really are.. sleep deprived and terrified.

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  23. I have a son who is very "Kinglike" he just turned 13. He is nonverbal,epileptic ,severely developmentally delayed. As a bonus, he has Cyclic Vomiting Syndrome.
    I have a daughter who was very low verbal at 3. She is now 17 and very high functioning. Both of my children were raised in the same home, in the same amazing school system. When my son was 9, an intelligent person actually asked me why I didn't try the therapies that worked so well with my daughter. Why didn't I think of that?

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  25. We are the parents of the *Results not Typical* child with Autism, who went from extreme to mainstream. Because of (insert supermom, superdad, super occupational therapist story here) Sam is starting the process to be declassified from Autism, and now classified as ADHD.

    Honestly, I don't know if I did it, my husband did it, our OT did it, the dog, the food, the air, the melatonin, the excess coffee I drank. We just don't know.

    You post, advocate, and teach us so much about how to parent a kid on the spectrum. As we went into battle with our health insurance for the first time (and sooooo not the last time) it was YOU that I turned to, scrolling through your blogs, looking for any and all help I could find on the crap that health insurance will pull.

    Thank you. You are part of the reason our son is coming farther than we thought possible.

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    1. Megan, this is one of the BEST comments I think I ever got on my blog! I get parents all the time telling me how much I've helped them which is great but for you to say that my blog is part of the reason your kid progressed is really touching! I'm a bit choked up over here!

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  26. Wonderfully put. It's one of the main reasons I keep tabs on your blog. You are real, not living in manufactured hope of what you are "supposed" to be saying.

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  27. WHY CAN'T PEOPLE IN THIS WORLD WE LIVE IN TODAY JUST ACCEPT THAT EVERY CHILD IS UNIQUE,PARENTS OF ANY CHILD WITH WHATEVER DISABILITY SHOULD BE HONERED FOR THE WORK AND LOVE THEY PUT IN 24 X7 IT IS A POSTCODE LOTTERY AS TO WHERE YOU CAN GET THE HELP AND SURPORT NEEDED TO KEEP SANE ALL THESE PRENTS A SUPERSURVIOURS DAD'S MUM'S AUNT'S UNCLE'S GRANDPARENT'S AND EVERYONE ELSE IN BETWEEN TO LABLE ANY ONE OF THEM IS IN A WAY AND INSULT, THEY LOVE THEIR CHILDREN AND LIKE MOST PARENTS WILL DO WHATEVER THEY CAN TO MAKE THEIR CHILDS LIFE THE BEST THEY CAN AND FOR THAT I HONOR THEM AND HAVE THE GREATEST RESPECT FOR ALL THEY GO THROUGH ON A NEVER ENDING QUEST FOR ACCEPTANCE

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  28. Deep down, no matter how much we do, we will never feel like we are doing enough for our autistic child. Acknowledging that fact helps me say focused on doing my very best for my child every day with the resources and information I have at that point in time, and THAT I can live with.

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  29. Actually, most people with autism have pretty mild autism, in my observation. Even if you have a borderline disability, you're already at the end of the bell curve.

    Of course, a lot of mildly autistic people aren't even diagnosable before they go to elementary school. Also, the distance between "point A", and "point B" is a lot shorter, and less inspirational.

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  30. So first of all, you are brave and I applaud that... I have been compared to a "super mom" as you called them by pediatricians and teachers and my kid is " high functioning" supposedly. I was however still potty training at age 7 and he still cannot be left alone for safety issues at 15. We do not know if he will ever actually function independently for all of his amazing gains. But here's what I do know: because he is high functioning, people expect that success. Always. It's not always successful. He understands his limitations and hates himself and has threatened suicide. We tried to plug into support groups but he was a bit more atypical than the aspie group and too high functioning for the autism group. How could I complain about my kid when your kid is so much well... Worse off? But now we are mostly alone without support from any sources trying to figure it out and accept that our kid may not be as successful as one might hope. He does have multiple other medical issues and I could blame them or the autism but really he is just, him. I guess my point is the pain is real no matter where your kid falls on the spectrum, the unknowns are awful, the expectations suffocating, and you generally feel very alone. After all, there are no kids just like your kid on any side of that spectrum. My child himself feels all of this to compound that and this was an outcome I didn't see coming. It's hard. No matter who you are or where. Your situation that is making you cry at night is no less significant to you because someone else is having a different experience. And that's ok.

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  31. I have two sons, 19 and 11. Both are autistic. Both, as toddlers, diagnosed with autism, hitting all points on the DSM -- more, even, than needed for a diagnosis.

    My 19 year old struggled for his first few years, and then took off. Gaining new skills, jumping hurdles, leaping and bounding. In grade 5 he had his academic supports removed from his IEP with my approval. In high school, he kept a solid 70 average, a part time job, and a couple friends. He is now living in residence at college four hours from home and holding his own with minimal support and instruction from us.

    For years, people lauded us as "super parents". Said he was lucky to have us, that we were the engineers of his success and should be proud. That we were miracle workers and somehow more special than other parents. Maybe be we even bought into the hype a little bit. So imagine our surprise when our younger son settled at the developmental level of a toddler and seemed to find that that's where he wanted to stay. Forever. At 11, he is marginally verbal. He cannot read, string together a sentence, or remember to check for traffic before running out in the road. He can't ask a question and has a hard time answering one. He has an IQ of 53. There's not a lot of space for leaping and bounding like his brother.

    People are not so vocal in idolizing our parenting skills now.

    Same parents, same parenting...VASTLY DIFFERENT OUTCOMES. There are no superparents. There are only parents who help their kids develop as much as those children are capable of developing. The rest is up to nature. My baby with the intellectual disability is never going to reach the same milestones as my baby who's studying Film hundreds of kilometers from home and has an IQ of 128. But he's got parents who love him and make the most of every single point of that 53 IQ and I think that's just as important as the "recovery" of his brother.

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  32. You're right. You're always right, AD. I'll admit that I shout my son's victories from the rooftops, until I'm visiting face to face with another ASD parent. Then I unconsciously switch gears to a discussion about the challenges he still faces daily. We don't commiserate, but we vent together. Honestly, no one with a profoundly autistic child wants to hear how amazing it is for a mild or moderately affected child to be mainstreamed or have an ASD DX removed. And when it comes to the woes of a parent who is "so close to living a normal life", but can't quite get there because Jr. takes too long to get dressed and misses carpool daily, or is failing a special ed algebra class, or offending his more prudish classmates because he doesn't know when to lay off the "Your momma" jokes...no one with a non verbal 14 year old who feces smears wants to hear it. Still, it's hard for ALL of us. We need to know that, wherever our own children fall on the spectrum, there are people who understand us, support us and share our journeys.

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  33. It was REALLY hard for me to come with grips that maybe "normal" just wasn't going to happen for my son. We could do therapies and interventions and make him "The best Jude he could be," but reaching a "statistical average normal" just isn't in the cards. When I compare him to himself - he's done amazing things. After a year of intensive speech therapy, he had a 100% gain in skills. Awesome, right? Except that "100% better" was going from 1st percentile to 2nd. It doesn't mean I don't push him to be the best he can be, but if I'm realistic, no matter what I do, he's not going to be "average." I think people mistake accepting reality for giving up, and since we don't ever want to look like the "bad parent who gave up on our child," we keep grasping.

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  34. Thank you for posting. I've never commented on your blog before, but boy, I needed this. I'm the mother of an almost-five-year-old severely autistic, nonverbal child. I agree with everything you said -- the books by these moms NEED to be written, these moms need to tell their stories/give hope, and these are wonderful testaments to the hard work of these ladies. HOWEVER...some of us work just as hard, if not harder, without those results. And I feel like people look at my kid and say, "She's not trying." When in reality all I do everyday is work. It's IMPOSSIBLE to navigate the emotions when you throw everything at your kid - GFCFSF diet (which we are still on), ABA, ST, OT, various methods like Son-Rise or Spectacular Bond, SPED preschool, homeschooling, and so forth and so on forever and ever - and none of it sticks. At the same time, I dare anyone to tell me what my child is capable of. It's such mixed emotions. I just wanted to say: I get it. And thank you so, so much.

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  35. I think it is important to add that not all parents fight/work hard for their children. As a teacher I have had parents who's children were deaf, and they did not learn sign language. I had a student who had very poor eyesight and his parents refused to get him glasses. I even offered to pay for the glasses and the doctor visit. I know that every one has reasons for what the do but it is really hard to watch. Especially as a parent of an autistic child. I would give anything for an easy solution like sign language or glasses.

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    1. The glasses example is child neglect. There is NO reason for failing to provide the child glasses. Should have reported them to DYFS.

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  36. I have also never commented on a post but feel that I should add to what has been said. I'm a mom of six beautiful children, four of whom have been diagnosed with Autism. My children fall on different parts of the spectrum with very different personalities, strengths, and needs and we too have done many different therapies and have struggled greatly with if we are doing enough. For my daughter who is higher functioning we continually hear about the fact that she "doesn't look autistic" and that her behaviors and obsessions are a result of our poor parenting, and have had a great struggle with family members not understanding that Autism comes in many forms. For my children who are more middle of the spectrum the questions continually come about why we aren't pushing more and that if they just (fill in the blank) they would be so much better (with the therapy schedule as it stands now, it is physically impossible to fit in another therapy in). With our lower functioning daughter, we hear about how they just don't understand why we aren't working with her like our other children.... We just need to (fill in the blank) or if only we would (fill in the blank). I guess that my point is that we have learned that life is tough no matter where on the spectrum and that comparison between our children or others is the worst thing we can do for our sanity. None of my children have made any miraculous leaps in growth or development and none of them are close to losing their Autism label. Every ounce of growth we have seen represents hours, days, weeks, months, and even years of cumulative therapy, hard work and determination. That celebration is equally sweet no matter which of my children has learned something new. For my daughter on the higher end and my daughter on the lower end that growth is different and much more incremental. We celebrate the small things a lot. We have people who work with our children who believe we are "super stars" and we have people who work with our children who believe we are barely passable because we don't (fill in the blank). There are days that it really gets to me that I don't do enough and then there are days I feel truly thankful as I look back to where we've come from. I enjoy reading your blog/Facebook posts Autism Daddy because it's nice to read about your reality. I have to often remind myself that everything we see on social media is the very best of people.

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  37. I often think "I wish these supermoms would just acknowledge luck had something to do with it. Yes, they worked very hard. Yes, they deserve credit. But luck was involved."

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  38. As a mom to a child with a chromosome disorder (and ASD diagnosis)I often wonder about some of the kids who are diagnosed on the spectrum and then later "cured" or whose symptoms become barely perceptible. Ours has virtually none of the markers of her genetic condition, and many doctors have told us they would never test her for it today for that reason. It's a fluke that they caught it when she was born. Some doctors say her delays are due to the genetic issue. Others say due to ASD. Unlike the chromosome disorder that's conclusively diagnosed with a simple blood test, ASD is diagnosed on symptoms alone. Who's to say that some of these kids weren't just delayed for unknown reasons and would have caught up on their own, anyway? I'm the first to admit that I often don't know if it's the therapy that's helping or if our child is just hitting milestones on her own schedule, and would whether we intervened or not. I do know why people like to tell us about the success stories they've heard about. They're not sure what to say. They want to give us hope. They don't realize how weary we are of trying so much and how much we sometimes need to accept things as they are so we can stop being disappointed. It's not their fault. They just don't get it because they haven't lived it.

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  39. I am grateful for your blogs and fb page. My son is high functioning, with Epilepsy and brain damage 2nd to the Epilepsy. He also has depression and anger issues and has regressed to the age of 8 or so. He is 11. All that to say I have been feeling I failed him. I can't get help because of my income, because I was married (now seperated) we lost his state insurance and one of his 9 meds is $300 for 90 days. I have been turned down turned away for so many reasons. I felt and still do that he could be so much better if I could afford the therapies or private schools. I don't give up nut I wall around behind a mask 90% of the time. Reading this I am crying because someone gets it. I'm a good mom but I don't have to be super mom. Thank you again for sharing.

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  40. Thank you, thank you, thank you for this post!! Living with severe autism, language disorders, cognitive delays and watching your AMAZING kiddo struggle with all of those and more can leave you feeling very alone and atypical...your post is a great reminder that we are much more typical than we realize.

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