It's true--those kids are awesome. I love how Noah not only memorizes the dialogue of movies, but that he also memorizes the characters' movements, too: he knows the choreography of an Indiana Jones fight scene down to every jump, kick, punch, and whip-crack. And Nick is a blast, too. We had the best party last night, thanks to his crazy autism-influenced sleep patterns. We played with his train, and he'd say "All aboard!" and wait for me to echo him; if I didn't he'd touch me to get me to say the phrase. Sure, being up in the middle of the night sucked when I had to wake up at 5:30 to proctor a writing placement exam, but it was so fun to hang out, just the two of us.
The hab agreed that my kids, like the others she works with, are awesome, but then a sad expression crept over her usually-happy face, "A lot of moms don't see it like you do . . . unfortunately."
As she said it, memory flashes of times I'd spent with other moms told me she was right. I've watched moms get angry at their sons for hand-flapping. I've watched moms freak out and forcefully intervene when their sons lined up toys. When I see my boys do those sorts of things, it doesn't bother me because I get it. I know they are over-stimulated or just simply in need of some way to organize the chaos. I get it. No big deal. In fact, it can be beautiful.
I adore the boys for exactly who they are, so it comes as a surprise to some that I use biomedical interventions with them. Why would I try to "fix" them if I really do accept them for who they are?
The rhetoric scholar in me is painfully aware that the language of the "cure" debate is a minefield. Words like cure and fix imply non-acceptance--my child is wrong and I need to change who he is. Ugh, I don't like that rhetoric. It reflects such narrow-minded absolute-ism. An absolute-ism very, very few of the parents who use biomedical interventions would ever espouse.
So if I do accept my boys for the brilliant, funny, unique little guys that they are, why am I pursuing biomed?
For me, it's that I can't stand seeing my boys in pain. No, I don't think that the traditional traits of autism are painful for my guys--the verbal stims and the spinning and the obsessive interests and the rocking. But there are other things that cause them pain. Like the chronic diarrhea Nick suffered for 3+ years. Like the pain Noah's extreme sensory sensitivity causes him, so bad at times it brings him to tears.
Because of the pain, I've been trying to treat their symptoms. With Nick, for instance, I tried to get all the information that I possibly could through lab tests, and then I worked to treat the things I found. Nick had extreme deficiencies in many of the basic nutrients and amino acids our bodies need, so I gave him supplements to give his body what it was missing. Nick had an on-going low-grade measles infection, so I treated that. Nick had dangerously high levels of lead, cadmium, and arsenic, so I began the process of getting those toxic metals out.
When I started doing these things, Nick started to change. His skin's ghostly-white hue changed to a healthy glow. He started to have long, peaceful nights of sleep. His sick stomach got better. And, yes, he started looking me in the eye and started focusing on the world around him in a way he hadn't before.
He still has his kung-fu hand stims and he still obsesses on trains. He still loves numbers and letters. He still wrestles with his brother. He still laughs like mad when he watches Wipeout. He's still Nick, he's still awesome. He just has a healthier body.
Do I hope Nick's communication flowers someday? Of course. I want him to be able to tell me his needs the way his brother can. And do I want to teach my boys to interact with neurotypicals?Yes. But I happen to think that embracing neurodiversity is a two-way street, that neurotypicals share the responsibility of trying to understand different ways of thinking--it's absolutely unfair to place the burden of understanding on the autistic alone.
I'll continue to do all I can to give my sons healthy, happy lives . . . and I'll continue to think that they are the most awesome dudes I've ever met, no matter what.
