I spent a full day recently at a conference about culture and autism. There were some interesting presentations, especially one from The New York Times writer who penned a lengthy article about a New Jersey boy's transition from high school to adulthood. Another was from an anthropologist who provided interesting insights into the different ways in which autism is understood and lived in other cultures. I stayed until the end to hear a panel presentation about employment for individuals with disabilities, as I've been worried for years now about what happens when the school bus stops coming for Noah.
What I realized is that while it's possible to take a nugget or two of learning from these conferences, they are no substitute for the deep, relentless, day-to-day advocacy that parents engage in as the front line defense between their kids and the real world. No single story is going to tell me what the path for my child is going to be, even if it's 7,400 words' worth in The New York Times. Each journey is unique, and while I might be able to glean something from someone else's story, mostly I'm left to realize that what Justin in New Jersey experiences has almost no bearing on the life of Noah in New York. And perhaps it's unkind of me, but I start to focus on things like: Well, did his mom work full-time outside the home like I did for years and years? Does Justin have other siblings who demanded time and attention from his parents as well?
There's something that probably smacks of gross competitiveness or sour grapes in that, and I'll own it, if that's how it comes across. But unless you walk in my shoes, it's hard to explain how other people's success stories, rather than feeling like inspiration to a parent like me, can feel like a reproof, like a harsh critique of what I haven't done, should have done, etc. But then I think of the child I have, the life he leads, the love he knows, and there is no competition. He is who he is meant to be, and there is no mirror with some other boy's image that should ever be held up to him.
My heart also ached for the mother who asked about the more disabled kids on the spectrum who get closed or booted out of programs. Ah, the creaming issue. That one sticks in my craw too. Everyone wants to serve the kid with Asperger's who is literate, conversational, and has an above-average IQ. Ain't no one lining up for the kids who are aggressive and have IQs in the mentally retarded range. Success is awfully easy for programs to latch onto when they stack the deck in their favor, as some clearly do. They just conveniently ignore the wreckage they leave outside their closed and barred gates, the kids and families who have no place to go, no outlets, no respite. No hope.
I left the conference feeling that it was, up to a point, time well spent. I had the good fortune to walk the distance to the train station with a lovely woman who helps kids like Noah find jobs, and I look forward to connecting with her. She doesn't know me, but was very encouraging about my mothering skills based on what I told her of Noah's path thus far. Maybe she was just being polite, but I'll take my encouragement where I can get it. It's a little pocketful of sunshine, a hedge against the inevitable bad, brooding day somewhere on the horizon.
No comments:
Post a Comment