Susan's Blog

Wednesday, February 20, 2013

Why Job Training Matters for Students w Autism

You can read my latest piece on autism and job training in Education Week, right here.

Thursday, February 14, 2013

A Mother’s Dream

A few days ago, I dreamed Nat could speak– I mean, really talk, not just the hesitant monosyllabic speech he uses. In the dream, I was riding in an elevator with Nat and a pretty blonde woman, in her early forties. She sees him, 23 years old and sucking his thumb, but doesn’t realize he is intellectually disabled. She says flirtatiously, “You must be a movie star to be doing that in public like that.”

I answer for him, as I always do, brusquely defensive and self-righteous: “Actually, he is autistic.” But then – Nat takes out his thumb and says, nonchalantly, as if he could talk all along: “Actually I do come from a long line of theater people.”

I awoke gradually, uncertain that this was a dream, but each moment of dawning clarity brought more pain. It wasn’t just Nat’s talking that blew me away, it was the level of self-awareness and subtlety. I hadn’t realized, after all these years, that I still wanted that so desperately. I think this flicker of desire must have come from a recent decision his doctor had made, to reduce Nat’s medication. I had agreed that we should try this, because Nat has been doing so well for so long. We reduced his meds around a year ago and found that even though he seemed more on edge, he also seemed to be able to answer us more often. And anyway, the goal had never been to have him medicated forever; it was just supposed to have been a “buffer” against aggression that started 13 years ago. I can never forget that horrible afternoon when he was 10 and he attacked me in the subway station, simply because we were going a different way home. I struggled to fend off his clawing hands while keeping hold of his baby brother and the stroller at the same time. I was desperate to calm him, to soothe him. Events like that became common, so we turned to serious neuroleptic medication to help him.

While the decision to medicate made sense back then, I have learned over time that so much of parenting Nat has been about a kind of letting go, of hanging back to see what could happen. After all, we learned how well he could ride a bike because we (accidentally) let him ride off around the block, out of our view. In a mixture of choking fear for what might happen, and a small soft certainty that he’d be okay, we ran after him, knowing we could not overtake him. We had to wait, hearts in our mouths, for his safe return around the corner. We didn’t really know for certain he could do it safely – and yet, didn’t we? Somehow, it was okay. He came barreling down the hill towards us with a devious smile that seemed to say, “I told you so.”

Taking Nat off his meds is a slower danger than a bike accident, but almost as much is at stake. Nat is living away from us, in a house with roommates and staff, taking care of himself in so many ways. He routinely makes meals, cleans, and decides how to spend his leisure time. He plays on a basketball team, and he works three days a week at a supermarket. I do not want to see this jeopardized by a return to outbursts and aggressive behavior. He could stand to lose so much. I dread the phone call from his day program or from the house staff, like what I used to get during his middle school days: “There’s been an incident…” It’s been peaceful for so long.

The fact is, though, that a less sedate Nat could mean a more alive Nat — alive in every sense of the word. He will likely feel more anxious simply because he will be more aware. He will experience noise and sensation more acutely. And yet, with some of that comforting haze lifted, he may see things more clearly. He might understand more. Isn’t it his right, as a human being, to take this chance?

I guess, in this season of audacious hope, I feel my own sort of optimism: that maybe Nat at 23 can indeed handle a new, raw but heightened perception. Maybe with greater perception will come better communication, a stronger connection to the world, and all that it brings – delightful or frightening. Because parents will do anything to help their children grow. Mine is a mother’s dearest hope; I have a mother’s dream.