Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism. Hear more from Jeff and his wife, Jill Cornfield, on their fantastic blog, AutismVox, and be sure to check out their podcast.
I got my first sense of how people reach for labels when Alex was born: 27 weeks gestation, 21 ounces, living in the plastic box of an isolette in a gigantic hospital, wires stuck on his every limb and across his chest that was slightly smaller than a deck of cards. I learned the word “preemie.” Soon after, I learned that society often likes to glue the word “miracle” to the word “preemie.” To people who said such things I gave the Shocked But Hanging In There New Parent look.
Alex spent his whole first year in the hospital, wearing more wires than hang in the average hardware aisle in Duane Reade. I remember one afternoon, visiting him and playing a pinball game in the patients’ lounge. I love pinball, and have probably dropped three months’ mortgage in quarters down those slots. This game in the lounge was free, however, and I remember thinking that I hoped Alex would work his way down the road of miracles to the point where he’d go somewhere where the games of pinball didn’t have to be given away.
And he has. He’s played skee-ball in arcades with his younger brother Ned, my other son. Ned, who is typically developing, stood at the foot of the game and rolled the ball up the ramp and into the little holes under the metal grill, earning his points. Alex picked up a ball, ran up the ramp, and tried to place the ball under the screen and directly into one of the little holes. Makes perfect sense! people marveled. I gave them the That’s Not the Way My Son Should Play Skee-Ball And We Both Know It look.
Jeff and Alex
Last weekend, Alex kept trying to scoot through an open door in the basement of our neighborhood supermarket. The store wasn’t crowded and hardly anyone noticed me hauling him back to the checkout line except a young lady working the register. I saw her looking at Alex with the small smile and direct eyes that I’ve learned mean: She knows someone with autism. She stroked his head once. I appreciated the gesture; she might have stroked his head out of understanding the kind of life Alex is likely to have. Funny, though, how I wish she’d maybe felt comfortable yelling at him for trying to go into the basement, comfortable because he was normal and he shouldn’t be trying to run in the basement of a grocery store. I gave her the Tired Slightly Angry Parent look. That is rapidly becoming my favorite look because so many parents of the typically developing wear it half the time.
People – at least the people I’d like to have around Alex – seem to need to think there’s something beyond vulnerability to those with autism. Something special or beneficial to society, or at least likable and warm, like the message of movies like Rain Man, lessons tied up in what Richard Yates disdainfully called “a neat little dramatic package.” Yeah, there’s autism. But they can count cards, too!
Some of them can count cards. Some can paint. Some with autism can do all sorts of things, just like some of all of us can, and of course the verdict is still a long way off when it comes to Alex’s real abilities. I want people to stroke his head someday because he helped them, because he contributed in a way that brought him fulfillment at the end of his working day. And I just want to live to see him get that. I call that my Hopeful Outlook.
Read Jeff’s first post on YAI Autism Community here.
