On His Own Terms
As usual, I’m awash with anxiety.
We’re going to a graduation party for our neighbor’s son. What I’m feeling isn’t about having to tamp down the residual sadness I feel that my 20-year-old autistic son, Mickey, isn’t going to college too. Well, okay, maybe it is just a little. Mostly I’m worried because tonight there will be 50 or so people there, many of them teenagers who’ve never met our son.
Mickey, however, is eager to go. So keyed up he doesn’t even balk when we tell him he can’t wear a tee shirt, pulling on a pale blue polo shirt without protest. “Can I bring my Muppet album?” he asks.
“No hon, not appropriate.”
“Okay,” he says agreeably. “Next time.”
Without even waiting for us, he strides confidently across the street. He greets people happily, working the crowd. I shadow him; even as I stop to chat, I keep my eyes on him. He walks out to the deck; I’m right on his heels. He walks back into the kitchen; I stand close behind.
“Can I have some water?” he asks the caterer.
“Please,” I prompt him.
“Don’t follow me Mom,” he says, irritated. I’m startled. But really, who can blame him?
I get it. He hates my hovering. But I’m not only monitoring his behavior.
He’s excited to be here. Maybe too excited. That can trigger a seizure. I remember a dinner in this same house two years ago. Mickey beside me at the table. How his head pivoted toward me as his eyes rolled back. The room went eerily still as I cradled him. “I’ve got you, you’re safe,” I’d whispered to him over and over until the seizure subsided.
But do I really need to be this vigilant? No 20-year-old wants his mother policing him. I take a deep breath.
“Okay, Mick,” I say. “I won’t follow you.”
Mickey plunks down at a table filled with teenage boys I don’t recognize; one of them slides over to make room. Mickey has always wanted to connect. I think back to the time a behavioral therapist observed him in the elementary school cafeteria. Her report had been gut-wrenching. Each time Mickey sat down at a lunch table, all the other kids got up and moved. Mickey doesn’t have much small talk in him; he still struggles to sustain a complex conversation. But I watch as he listens intently and hangs in there. No one stares; no one points; no one moves away. Later I see him in the backyard with the other boys, somewhat awkwardly whirling a Frisbee back and forth. I feel a rush of gratitude. The other kids have absorbed him into their group without question.
I’m not kidding myself; I know there are many times he still stands out. Does this bother me just for his sake? Isn’t it also about my own abiding discomfort when it feels as if people are judging him—and by him, I mean us—so critically?
I long for him to fit in. But I also want him to be exactly who he is: his playful, endearing, unfiltered self. How do I reconcile the two? Is it even up to me any longer?
Our neighbor’s daughter Ali joins me. “I had a great conversation with Mick,” she tells me. Ali is studying to be a special education teacher.
“Was he talking about the Muppets?”
“Not at all,” she assures me. “He told me he’s been working out at Planet Fitness and asked if I wanted to go with him.”
I love that he’s mustering up appropriate conversation. Yes, he can only sustain it for brief periods. But how far he has come, since that day 18 years ago when his first speech therapist told me he might never speak at all.
My husband Marc joins me on the deck. Together we watch three handsome young men tossing a football in the twilight. Our son is one of them. He is holding his own.
“Look at him,” Marc says softly. “You know what’s remarkable? How unremarkable this looks."