Thursday, July 5, 2012
My Son w/ Severe Autism Is Happy. Isn't That The Most Important Thing?
(originally written & published on July 5, 2012)
You all know I'm not a big fan of autism. That's been well established.
I already wrote about how I don't think it's a gift from god. (you can read that HERE)
I wrote about how, in my opinion, the autism parents who say they wouldn't change their kid if they could / take away his autism are a bit delusional. (you can read that HERE and HERE)
And I go thru stretches where I have MAJOR "grass is greener on the other side" syndrome. I wrote about that HERE.
And part of me is going thru a stretch like that right now. Part of it I think is I'm reading the book by Carly Fleischmann's dad. (If you don't know who Carly is you can learn more about her HERE)
And I'm reading it getting envious of (a) the resources and money that they had at their disposal and (b) that ABA worked for them and that even before her "typing" breakthrough she was making small steady progress and (c) of course I'm envious of how she can type and communicate her wants, needs, and desires.
As many of you know my 9 year old son Kyle has not made much forward progress (academically & developmentally) in years. I say on here quite often that he has the receptive and expressive language of an 18 month old and he's been stuck their for years.
So I read about Carly and I read about some of your kids and some of the progress that they are making and yes I sometimes get jealous and envious.
And today I was driving to work and I drove past a school where they were unloading teenagers in wheelchairs off a van and into the school. And part of me felt
sorry for these kids but then part of me went to my "grass is always greener" place and I thought "yeah but I bet they can talk" and "maybe they'll hold down a job and live independently".
And then I stopped myself and thought "But I wonder if they are happy?" and then I thought "I wonder if they had to get alot of surgeries or what sorts of medical issues they have"
And for maybe the first time EVER I thought maybe Kyle's got it better than some of them. And I even thought maybe some of their parents have alot more stress & challenges than we do. Heck, maybe some of those kids has life threatening illnesses.
My son Kyle is almost always EXTREMELY happy. He is happily content to just wander around the house munching on popcorn and watching Sesame & Dora all day long.
Outside of the summer of 2011 ("the summer of rage") he's always been pretty happy and pretty malleable and pretty go with the flow. Mr Mellow Yellow.
And the more I read about Carly the more I think that her & Kyle are completely different. Carly was/is prone to lots of violent meltdowns. Carly was extremely intelligent and was trapped inside her body and found that frustrating. Carly knew she was different and hated it.
Kyle? I think what you see is what you get. For better or for worse (and this is hard for a dad to say) I don't think there's an extremely intelligent kid in there. And I don't think Kyle knows or cares that he's different. He's just Kyle. He shows very little indication that there's a brilliant mind in there. We're still working on "point to nose" at 9 years old.
I've said a few times that sometimes I feel like our lives are like the movie "Groundhog Day" and we've been kinda reliving the same day (and raising a toddler) over and over for years.
But ya know what? Maybe that's exactly what Kyle wants. And maybe that's exactly what he is capable of.
And for the most part he's been happy for most of his life. He's had plenty of issues, don't get me wrong. Painful stomach/ constipation issues, "the summer of rage", a dermoid cyst removed from his eye, lots of cavaties cuz we cant brush his teeth, and now seizures to name a few...but for the most part he's been happy & healthy for his 9+ years on this earth.
Now compare that to Carly or some of the even higher functioning kids I read about who know they are different and maybe Kyle doesn't have it so bad. As long as he stays his happy go lucky self for the rest of his life, who's better than him?
And what about those kids in the wheelchairs I saw? I'm sure some of them are happy and will lead happy productive lives and I'm sure some of them are miserable and have medical issues that would scare the bejesus out of any of us. So maybe Kyle, through his obliviousness to his situation, has it better than some of those wheelchair kids I saw.
So I think alot of it boils down to me as a parent. He's happy most of the time, but am I? Am I happy with this situation? Would I be happier with a typical kid?
I want him to progress. I want him to be better. I want him to be more typical. I readily admit all of that. But most of all I want him to be happy.
Now I'm not naive enough to think that this good stretch we are in with Kyle will last forever. At some point something's gonna happen or the other shoe will drop and another crisis will fall into our laps.
But thinking back it almost seems that most Kyle crisises are more of a crisis for me & the wife than they are for Kyle.
Our school district f--ked up in September and didn't have a placement for him. And mom & dad were in crisis mode, but Kyle was fine with it.
He had to go under general anesthesia at a hospital for dental work last year and we me & the wife stressed for a week, but Mr Mello Yellow was oblivious to the whole thing in the days leading up to it and did pretty ok at the hospital day of.
Even his seizures last month were more stressful to me & the wife than they were to Kyle. I mean he hates the EEG test, getting all the leads taped to his head was absolute torture for him. But 3 days in the hospital was pretty fun for the king.
I guess if I could go into a time machine and see Kyle as an old man after we're gone and see that he's well taken care of, and that he's happy I could rest a little easier at night.
When all is said and done maybe he's the lucky one. Maybe we should all live an oblivious life. Sounds good to me. Sign me up! ;-)
As usual. I'm rambling. This is all over the place. I'm gonna end it here...And the title of this is really stupid. If you can think of a better title please suggest it.
Over and out...
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