Jeff Stimpson
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.
Alex pushed Jill the other night, when he wanted to put plastic animals on an already crowded kitchen counter. Jill lost her balance and almost stumbled; it wasn’t as if he’d actually almost knocked her down, but still she turned to me with wide eyes.
“I feel like my days with him are really numbered,” she says. He’s nearly 12, and though slender and small for that age he’s still pushing 70 pounds. Jill isn’t a tall woman, and suddenly Alex comes up almost to her nose.
His plastic animals on every clear surface. His hands down his pants until we tell him to stop and just do that when he’s alone. Blasting Elmo during family events. Alex is getting bigger. It’s all that damned milk and ice cream, and the melting away of the years, I guess. Suddenly Alex and his family are coming to the time of talking about when maybe he doesn’t live with us anymore. Doesn’t, or can’t.
Time passes faster than we'd like to think
A few years ago, reactions to our saying such a thing bordered on anger. Family members pledged to take him themselves, or hugged our shoulders and assured us that we were just having bad moments and that we’d soldier on, like all parents. Now relatives who’ve known Alex a long time or who know autistic kids themselves are also starting to use phrases like “never live independently.” When, during a recent family dinner, I voiced my plan for him, the table got silent.
“Are there options?” Jill’s cousin whispered.
Years ago, this part of the country had an option called Willowbrook, a state school where people like Alex were chained to walls, starved, caged – and, from what I’ve heard, that was on good days. Geraldo blew the lid off Willowbrook in 1972. (Geraldo is slated to speak about this at YAI’s International Conference on Monday, April 26.) I do know that, assuming there are any budgets left half a decade from now, Alex will qualify for day programs, which are places adults with developmental disabilities go to continue learning about getting jobs, getting dates and all the other stuff that parents like me are often terrified they’ll wind up teaching their grown-up kids. Most of the day programs I’ve seen seem well assembled.
Day programs don’t feed the bulldog of a place to really live when autism becomes too much for a family, however. We’ve thought maybe a residence for him as a grown-up. We’ve also thought maybe a residence for him before then. I tell myself that I’ve always thought it a convention of labor unions that we all stay at home until we’re 18. Jill went to college at age 17; people the world over often go to boarding schools in their early teens, or even earlier. The Royal Navy once had midshipmen age 5.
Jill’s cousin – who just dropped dead at 53 – went the residence route with his autistic son a few years ago. The boy is now 16, and big. (“Maybe he got too big for his mom to handle,” Jill wonders.) He went into a residential school two years ago; the extra time to build relationships beyond his dad must have come in handy for the boy when his dad died.
Years do melt. Last time I saw him, my older brother looked at me and remarked how he’d had a “quick life.” Jill doubts she’s going to make 70. “The supreme dread for us, and for every middle-aged parent of a special needs adult, the singular ache that dries the mouth and races the heart at 3 a.m.,” writes blogger Glen Finland on the Autism Speaks site.
We’ll never grow old. There’ll never be another Willowbrook.
Life planning is something that most of us would rather not think about. But for parents of people with significant disabilities, it’s never too early to start. This year, YAI’s International Conference will feature two sessions on life planning. See page 17 of the conference brochure for details.
