Tuesday, June 3, 2008

Inflammatory New York Magazine Piece

I’ve just finished interesting article in New York Magazine entitled, “The Autism Rights Movement: A new wave of activists want to celebrate atypical brain function as a positive identity, not a disability. Opponets call them dangerously deluded”. Click here for the online version.

I am admitting it is thought provoking…and clearly not for just me, I see from the Web site that the comments for this story are in the hundreds and growing.  For me, I’m thinking it through because Demetrius is high on the spectrum.  He’s not an autie who bangs his head on the wall, wails all day and pulls out his eyelashes.  I’m not sure what they are advocating in this piece is all encompassing though (just like autism).  Explain ‘acceptance of me as I am’ to someone who can’t be reached, or to the family members trying to get through the day helping said person cope with the world as it is.  Amanda Baggs comes to mind here, she is communicating with the world in her own way, and that’s great. But there are others that can’t at all.

For Aspies and higher functioning auties, I have to say yea, I get it.  But the one sized fits all doesn’t fit their thinking anymore than it fits what we NTs would want to change.  It isn’t either/or…and the older Super D gets, the less I want to change him, and just want to watch him bloom in his own way within the world he lives. 

But he has to live in ‘our world’, and whether he likes the rules or not is irrelevant, he’ll have to adapt to get along. That’s the long and short of it.  D may be able to carve out a niche for himself, but it will be by working within society.

I am a relatively healthy guy, but I’ve lost three of my four grandparents to cancer…I have an aunt that is a dwarf and can almost not walk without shots and potential surgeries as he body breaks down in her 40s…I have another who is in the horrible throes of Parkinsons disease and is probably on her way to being a ward of the State of Indiana….and an Uncle who suffered severe burns over most of his body and has to deal with people staring at him his whole adult life….so Demetrius is just another in this bloodline. While none of these are the same (minus the cancer victims), I’d be willing to bet dollars to donuts that all of them would be willing to change, at least, some part of their conditions for a bit of normality (whatever the heck that means in their minds, or in mine, for that matter). 

Sure, these conditions are all different, but we all want acceptance and some sort of normalcy in our lives. Acceptance by others, on our terms is ideal…but rare.  Acceptance is something we humans crave instinctively. It is what society is built on, from cavemen to today’s metro-sexuals.  And when you have a condition that conditionally puts acceptance at risk, it is human nature, I think, for family members to want that normalcy of acceptance for the one at risk.  We spend energy, time, thought and often our digestive systems on trying to mitigate the risks of acceptance. 

I am no expert at all in this argument. I’m just a dad with a boy with autism.  I don’t get into the muck of such an argument on a daily basis, and freely own up to that. But I do know that Demetrius is Demetrius…and I like him the way he is.  Three years ago…yea, alot I’d change. Today, less so, but that’s because I know alot more and have come to terms with alot more- that’s a Jerry thing, not a Demetrius thing. 

I’m afraid this discussion isn’t going to go away.  I believe that I’ve worked with a number of auties in technology that simply weren’t diagnosed, or were private about it if they were. But I agree, how is that any different than working with a deaf person or a diabetic? It is not, as long as we can all come together and get the job done. 

But I’m not willing to say ‘it is what it is’ just let Demetrius grow ‘in his own way’.  Every child is molded by his/her experiences and that has a lot to do with the parents.  It is my job, my role in this world, to try to teach Demetrius and Maya to be FUNCTIONING MEMBERS OF SOCIETY and create a great opportunity for them in the world, including a positive outlook, for them in their lives.  I want the world to be their oysters…and yes, on the best terms for them. Some day I won’t be able to make those choices for them, but today, at 8 and 6, I make alot of those choices with Kim.

If I can help Demetrius on his journey through therapy, through IEPs at school, through working with him, through hiding the TV remote, then I will do it.  I want his life to be better.  I don’t want to change him, I want to help him, on his terms as he gets older, and in every other way possible.  But today, I’m trying to mitigate those risks.

Other parents go through this too with their regular kids folks – math or reading tutors, violin lessons, gymnastics. It isn’t just in the world of autism where parents get on the horse to try to change things to make their kids better.

Like I said, the piece is very thought provoking, and in that New York way, very raw/angry/and intellectual.  Thus all the comments referred to previously. 

I’d like to know your thoughts after you read the piece.

Posted by Jerry in 15:25:20 | Permalink | Comments (3)

The Slide At the Pool

We are members at a mega-health club called Life Time Fitness. Our pool was closed (kid pooped in the pool) so we headed over to the club’s. My gosh. I hadn’t been to this part of the club. The pool was totally awesome: gi-normous. Huge like you’d see at a water park. I felt we were at one….and two amazing slides.

Of course all the kids wanted to do was go on the water slides. Our pool in the subdivision doesn’t even have a diving board – so this makes the club even cooler. So as the kids ran into the water…they swam to the other side and stood in line for the slide.

As we watched, we saw Maya talk to a boy in line behind her on the steps (Demetrius 2-3 steps behind her). We saw her grab Demetrius’ hand, talk to the other kids… as they let Demetrius up in line with Maya.

This happened repeatedly.

We discussed what we thought Maya was telling those kids in line to make sure Demetrius was with her, and we were really impressed by her persuasion skills. Kim asked what do you think she was telling the kids?

Jerry: That he’s autistic, she’s his sister, and they need to go together.

Kim didn’t answer, she knew what I knew (and probably wasn’t really asking me as much as asking rhetorically). We watched her make sure he was okay and that they were both having fun.

So when she got home tonight – she got to watch three Hannah Montana episodes and through dinner.

Posted by Jerry in 01:33:23 | Permalink | Comments (1) »