When I was still blissfully unaware that my family was teetering on the edge of the abyss, I heard the word “Asperger’s” for the first time. I was pregnant with Benjy and lying on my side on a massage table, a pillow under my enormous belly. The massage therapist had just told me about an adolescent boy with an obsessive crush on her. The boy had Asperger’s Syndrome.
I know this is so South Park, and clearly beneath me, but I was woozy with pregnancy and Swedish massage, and I heard her say “ass burgers.” This evoked images of donkey-meat (or worse) on a bun.
“He eats them?” I murmured, emerging from the sublime straight into the ridiculous.
“Eats what?” she said.
She laughed. “No! He has it.” And here my anecdote ends, because here is where I dozed off.
I looked this Asperger’s thing up when I got home; my daughter was at daycare and my husband at work, and there was not much else to do except clean the cat box, which was temporarily off limits to me.
Asperger’s Syndrome, it turned out, was a form of autism. I knew nothing whatsoever about disorders that began with the letter “A.” Nor did I much care, because the afflictions of my people began with other letters. I did have a sister once, whose name began with an “A,” but she was taken out young by an aggressive “C” – as was our paternal grandmother, her namesake. “C,” “MI,” “OCD,” and “TS” were our alphabetic demons. This Asperger’s/autism stuff did not concern us.
And I’ll bet you know precisely where this story is headed.
Twenty-four months after I first typed the “A” words into a search engine and was smacked in the face by a zillion-and-one unreadable studies and just as many lunatic rants, I found myself parenting a child who must have been a foundling, or switched at birth. This was not the demigod hero I expected when I was expecting. He was not even the boring sack-of-potatoes baby who lived down the street. Ben was unlike his older sister, the children of our friends, and the hypothetical children featured in all those outlandishly optimistic parenting manuals.
He might have been like children afflicted with autism or Asperger’s, but there was no longer time to look stuff like that up.
Now my conscious hours were divided between poorly performed paid work and poorly achieved household and child management. It was all disorder, all the time around our place: tantrums of the colossal variety, missed milestones, and a Wild West sort of domestic chaos. Benjy had no language, except the jargon he alone understood. He had poor eye contact. No pretend play, no pointing at objects of his baby-desire, and no clothes on his body when at all possible. We were unsure what all this meant, but once we threw off our denial we knew our son’s behaviors were not quite “right.” Chronically inflamed emotions, hand flapping, dancing eyebrows, and creeping around like a Marine while other kids his age were staggering about in that adorable, drunken-sailor fashion—these ways of our boy provoked comments from the general public that ranged from well-meaning to nosy to stupid to cruel.
Ben’s greatest achievement, in his very tender years, may have been his uncanny ability to drive Lars and me to the edge of despair—and total strangers, probably nice people most days of the week, to say things they should damned well have kept to themselves.
Believe it, Readers: Hell hath no fury, like a special needs mom scorned.
What followed was a long stretch of various therapies, hundreds of visits to hospitals for tests and specialists for diagnoses—and on my part, lingering glances at inappropriate moments into the cardboard box in the basement where we stored the wine.
Over the years, a lot of other things followed those lingering glances. After mental illness reared its frightening head there were more lingering glances, only this time at the stronger, amber-colored stuff that lived in our dining room hutch. More diagnoses and re-diagnoses in various categories: developmental, physical, psychiatric. A million-and-one medication tries—and almost as many second tries. Crises and crises and more crises. Moments of utter despair for us all. And a few, transcendently wonderful gifts from the universe, just to ensure we kept swimming.
If you are human, you have squared off against adversity. Sometimes you’ve won, sometimes you’ve lost. On the other hand, if you are human (as opposed to, say, a spambot—and if you are a spambot, please remove yourself from the premises immediately, or I shall call in security) you’ve also experienced things that are just perfect. It’s those unexpected, unsolicited gifts of loveliness we need to remember, if we are to survive the challenges life flings at us. A rare, radiant smile on a depressed child’s face. The vast, cloudless blue of an early-summer sky. These things are as much ours as are sadness and pain. And they do a far better job than the cardboard box in in the basement, or the amber-colored bottles in the dining room hutch, at helping us keep some forward momentum—even if we end up on a different route than the one we’d planned.
Readers, I’d love to hear your stories about unexpected blows and alternative routes. Please, share!