Aging, in general is out of our control; we cannot slow the hands of time for ourselves or our kids. We hope that as our kids grow older, they also become more mature, more savvy, more knowledgeable, and more independent. We hope they become less anxious, less perseverant, and less dependent. We hope that we will always be there for them, but secretly hope that, someday, they won’t need us to be there. And so we worry. Parents of autistic children are the fiercest worriers there are. If that sounds like an oxymoron, why yes, yes it is; we have to be in order to plan for every possible eventuality, and have no problem ‘throwing down’ to get what we need for our children.
We have to accept that there will be changes in the physical traits of our children: those secondary sexual characteristics that come with surging hormones. You know which ones; I don’t have to get too specific here. Mike is already almost as tall as I am, and wears almost the same size clothing as I do; I think I might very well do a double take if I hear my son’s voice start to change, a la Peter Brady on The Brady Bunch.
Here’s to hoping that we all make it through adolescence in one piece. -Ed
In the last few months, my 14-year-old son, Jonah, has grown taller than his mother. Which means just one thing: I’m next. In our below-average-size family, this doesn’t exactly qualify him for March Madness; still, it should be cause for celebration.
Jonah isn’t celebrating. Instead, he seems to be finding the prospect of growing up unsettling.
A lot of us do, but, in Jonah’s case, the mysteries of getting older are combined with the even more confounding mysteries of having autism. So while other kids are likely to take your word for it that growing up is a simple fact of life, Jonah is skeptical. Occasionally, he even expresses a desire to be short again, which probably explains why he asks his mother to stand on tiptoes whenever she’s next to him.
My wife, Cynthia, the practical one in the family, has dealt with this issue by tracking down a suitable book to read with Jonah. “What’s Happening to Me?” is a primer for boys going through puberty. With chapters like “Getting Hairy,” and “Down There …,” it’s straightforward and cheerful. But I’m still not sure it addresses Jonah’s real issue: which is not why is all this happening to him but why does it have to happen? In other words, why can’t everything go back to the way it was?
As the impractical one in the family, I’m ignoring all the puberty stuff – a convenient strategy, I’ll admit – and taking the philosophical high road. When Jonah asks me why he can’t be little again, I tell him that’s just the way life is.
Jonah remains skeptical. He doesn’t come out and say it, but I can guess what he’s thinking: “That’s not fair!” And he’s right; it isn’t. Who wouldn’t want to stop time if they could, or just slow it down a little?
I’ve also been telling Jonah not to worry about the future since that’s what is really behind his concern about getting taller. He’s worried about the special challenges he already senses await him. Here, too, my advice isn’t helpful or especially credible. When you’re the parent of a child growing up with autism, worry is all you do. You’d be crazy not to.
In her new memoir, “Next Stop: A Son With Autism Grows Up,” the Washington, D.C., writer Glen Finland transforms her worry into a practical strategy as well as an engaging story. She sets out to teach David, her 21-year-old son on the autism spectrum, how to navigate his way around the D.C. Metro train system.
Of course, more is at stake than David getting from point A to point B. There’s Ms. Finland learning “how to shut off my dependency on his dependency on me.” There’s also the fact that she and her husband are hoping that if David learns to ride the metro, he can get a job and an apartment, pay rent, have “a real life.” And maybe, Ms. Finland adds, “find somebody other than his dad and me to love him well into the future.”
For parents of children with autism growing into adulthood, “Next Stop” is a handy map “well into the future.” That’s because, thanks to the dramatic rise in the incidence of autism in recent years, that future is coming whether we like it or not. Someone, soon, had better write the book, “What’s Happening to All of Us?” After all, as Ms Finland points out, her son is just “the first generation to come of age in the age of autism.” There will be more.
In the meantime, Jonah is starting to get used to looking down at his mother. Probably because he has tougher questions he needs answered, like where will he live when he gets older and with whom.
“Will you still be my father when you die?” he’s been asking lately.
“I’ll always be your father.”
“No, really?” he says.
“What can I tell you, kiddo,” I say as philosophically as I can, “life isn’t fair.”