Lost and Sometimes Found: Mothering My Autistic Son
If summer is a time for family reunions and visiting old friends, when you’re the parent of a child with autism, it’s also a time for taking stock and hoping to hear accolades from people who haven’t seen your child for a while: I can’t believe how well he’s doing/how much he’s talking/how great he seems. Sadly, this summer, we haven’t heard too much of this.
All children with autism go through ups and downs. There are phases of mysterious and surprising leaps, where you look at every supplement, every therapy and food he’s eaten to explain some new, remarkable clarity. Then there are the phases like the one our 12-year-old, Ethan, seems to have been in most of the summer: not dreadful, just a lot of mindless humming, lots of silence, lots of staring out windows watching other children play in our backyard.
It’s a mystery why Ethan disappears this way when three months ago he was telling stories six and seven sentences long, asking thrilling and uncharacteristic questions about God and what happens to people after they die (all of this a huge abstract leap for Ethan.) These days, there’s none of that. Instead, there’s endless repetition of meaningless phrases and sobbing at minute disappointments. To even the most sympathetic outsider he can look spoiled and bratty because this is what happens as you shepherd your autistic toddler through the years: he becomes an 12-year-old who acts, on some days, like a three-year-old.
I once wrote a piece in the New York Times about the epidemic of autism producing its own cottage industry of well-meaning professionals, peddling all manner of therapies to the scores of desperate parents willing to spend any amount and try anything on the chance of “recovering” the child they’ve “lost” to autism. Having gone that route ourselves, we’ve slowly come to the realization that “recovery” is a loaded word and too often demands rejecting much of what your child innately is. For us, it’s been just as hard and ultimately, I believe, more important, to accept the autism and celebrate the small strides rather than getting overly focused on elusive cures. The day after the piece ran, I received 107 e-mails at my website thanking me and praising my parental wisdom.
I still believe what I wrote, but a year later, I have to admit that it’s hard sometimes to stand by it. I want to accept my child as he is, but I also want to ask for a little break from the autism gods — couldn’t I accept my child as he was three months ago instead of now? Could we lose the new tic where he grunts every three minutes like something has just dropped on his toe, though we’ve learned after many false starts, nothing has? Must I accept this disinterest he has in everyone these days except for the girls wearing tank tops that he’s developed a mysterious compulsion to look down? Could we throw away one or two of the more annoying compulsions like the one he’s developed to call me dee-mommy? (Harmless I know, but there you have it; hear yourself called this nine hundred times a day and see if you don’t start making a few rules around it.)
I thought of all this last week as we were leaving the beloved lake where my husband’s extended family has vacationed for the last 40 years. This year had marked the surprise return of my husband’s beloved Aunt Nancy, whose constellation of health conditions (diabetes, lupus, osteoporosis, heart condition, on and on) escalated so severely last fall, that she lay in a hospital, comatose, with her family gathered around her to say goodbye. That she is even alive nine months later is a testimony to the extraordinary care her husband and family have taken of her. That she is up at the lake, smiling and cheerful, perched on a nest of pillows to support her crumbling spine, is a miracle. The first time we saw her this summer, she looked changed by the year she’d just spent in hospitals and rehab centers. She was thinner, more fragile, her hair finally given over to gray, but she seemed, there is no other word for it, remarkably alive. The first thing she said to me was that she was sorry she’d missed my reading last fall. I shook my head in disbelief. Though I couldn’t remember the exact dates, I’m almost sure she was in a coma at the time.
I want my children to recognize what Aunt Nancy represents. I want to sit with her and not forget it either. We will all one day do battle with our own health, and hers has been an extraordinarily graceful one that seems to have allowed some capacity to still think about other people and still take pleasure in small things. She talks about some delicious peaches they just ate, and the banana muffins I brought. Mostly she seems happy to be at her cabin, seeing her family, looking out over the lovely lake we all share.
As we’re leaving, we stop by Aunt Nancy’s one last time, and I tell the kids it’s fine to wait in the car — I hate to surprise or inundate her with boys who want to drive cars over her sofa — but Ethan pops up from the backseat, and announces he’d like to say goodbye. I know him well enough not to make too much of this. He’s very good at the predictable exchanges with people, excellent with hellos and introductions, a champ with hugging people goodbye. I also know that, in truth, he loves Aunt Nancy in part for the contraptions that surround her these days, the whirring oxygen tank with the tube that snakes up her nose, the elaborate walker with what looks like handbrakes, the apothecary of pills on her bedside table. All fascinating for him, all a delight. Every time he’s seen her, he’s asked if she would make a sound like her oxygen tank. “Psst–” she says, smiling. “Psst.”
And he laughs.
Is it funny? Not really. But this last visit stays with me not for what is said, but for everything that isn’t. Ethan sits beside her, grinning from ear to ear, whispering questions about her nose tube and the dials on the tank. Honestly, do the words matter? They are two people who are loved and still have battled mightily against the bad hand of cards fate has dealt them.
Watching him take in Aunt Nancy, giggle with her, touch her oxygen tube, lay a finger across his own upper lip in what I know is a desire for a nose tube of his own, I think: remember this. There are pleasures along the way. There are delicious peaches, and the blessing of family, and the view of a lake she must have thought she’d never see again. There are moments like this, between a sick woman and a little boy who has disappeared for awhile, a boy who has spent two months in relative silence, but still has the good heart and good sense to get out of the car and say his goodbyes to his dear Aunt Nancy.
Photo by SeRVe61
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