Roughing It

I remember with utter clarity the dizzying feelings that swept over me when I became a mother for the first time: the heady perfume of newborn skin next to mine; the sheer perfection of 10 tiny toes; the exquisite, long dark eyelashes. Most of all, I remember the giddy sense of adventure—the feeling that I was embarking on a voyage into the unknown that would change my life forever.

Four and a half years later, my second child was born. In the months leading up to it, I'd wondered how I could possibly love another baby in the same all-consuming way I had loved the first, still loved the first. I wondered whether the whole experience would be an intense, but slightly watered-down version of the first time around. As anyone who's had more than one child knows, I needn't have worried. I heard the little lamblike bleating noises, saw the sweet M-shaped mouth and the same long, dark lashes, and I was in love all over again. Strongest of all, once more, was the sense that I was off on a whole new adventure.

I couldn't have been more right. At about 30 months, the son who had charmed me with his smiles, his gurgles, and his big brown eyes, was diagnosed as autistic. My world changed instantly and profoundly.

No child comes with a road map. But with a so-called "typical" child, you feel like you're at least traveling on the same road that millions of other parents are driving down. If you make a wrong turn or come to a dead end, you know that you can stop and ask for directions. True, some routes may be straighter or faster than others; still, eventually they all pretty much move you from point A to point B.

With an autistic child, it's completely different. It's kind of like being in an Outward Bound program. There's no road map. There's no road. No car. Now, don't misunderstand: It's hard, but not bleak. There is a certain exhilaration to being a pioneer. Every single step brings huge feelings of excitement—even if the steps turn out to lead you back in a circle to your starting point. On foot, you move more slowly. There are gorgeous, pristine vistas all around you and no distractions to keep you from enjoying them. Nor is it fair to say you're completely alone. Over the years, my son has had help and support from countless doctors, therapists, teachers, friends, and family members. It will always amaze me that so many people, many of them strangers, will go all out for a child who isn't theirs. Still, at the end of the day, they drive home, and it's just my little family crawling exhaustedly into that tent in the wilderness.

I've no doubt that before this adventure is done, I'll have explored every corner of life's globe. My son has gone from no speech at all, to screeching in high-pitched tones, to nonstop talking; from no touching, to constant cuddling, to frequent hitting—all of these in every possible combination, back and forth and back again. He has terrors and obsessions and anxieties to work through, but he also gets incredible joy from life and brings incredible joy to his parents and sister. The obstacles autism puts in his path seldom dim the gusto with which he typically greets each day. And when I say that he's changed my life, I don't mean only by making it a bigger challenge.

Still, it's not what I planned for, not the way most of my friends live. He factors into every decision I make—from my business schedule (and whether I should be working at all), to vacation plans, to sharing an occasional evening out with my husband. Not a single day goes by when I don't anguish over my beautiful child and the frightening fragility of his world. And it doesn't in any way diminish the deep and abiding love I feel for him to say that some days I wonder how it would feel to race down the superhighway of life behind the wheel of a brand-new convertible.

Reprinted from Middlebury College Alumni magazine, Summer 2003