Bad Animals (3 page)

By 1987, Lovaas had almost two decades of research studies to support his conclusion that in a good percentage of cases the children he and his team of therapists had treated had gone beyond “indistinguishable”—that “recovered” was, in as many as half those cases, a more accurate description of the results achieved.

The Consultant had also met Bridget Taylor; she'd even brought Taylor in as a supervisor once for one of her clients. Taylor had studied under Lovaas and was also legendary, mainly for the role she plays in Catherine Maurice's memoir
Let Me Hear Your Voice: A Family's Triumph over Autism.
Maurice's 1994 chronicle of how her daughter and then her son were “recovered” is an uplifting advertisement for unconditional parental love, but also for the almost miraculous effectiveness of ABA. Maurice's memoir also provides a kind of template for many autism narratives to come. First, it reveals what doesn't work—in Maurice's case, some cockamamie, parent-blaming hug therapy she initially swears by only to repudiate by the end of the story. Then it provides the antidote—namely ABA.

“You should read it,” Cynthia said. I promised to. But it would take me years to finally get around to
Let Me Hear Your Voice
and my expanding shelf of similar books. You see, back then, I couldn't bear to read anything about autism, not all the way through anyway. The stories I was coming across tended to be front-loaded with catastrophe: head-banging tantrums, vacant stares, grim prognoses, bogus therapies. Invariably, I couldn't make it past the first twenty-seven pages of
Let Me Hear Your Voice,
It's there that Maurice writes: “We are catapulted into a future that has suddenly become menacing, terrifying.” Similarly, on page forty of another classic autism memoir,
The Siege: A Family's Journey into the World of an Autistic Child,
author Clara Claiborne Park writes: “But autism? What was autism? How could we adjust to an unknown? To live with autism would be like living under water. We might never come up, yet we had not the option of drowning.” Likewise, the title essay in Oliver Sacks's
An Anthropologist on Mars: Seven Paradoxical Tales
has an early passage that stops me cold: “Most people (and, indeed, most physicians), if asked about autism, summon up a picture of a profoundly disabled child ... almost inaccessible: a creature for whom very little future lies in store.” Even if I knew consolation was coming, as dust-jacket blurbs invariably promise, as is the case in
Let Me Hear Your Voice
—both Maurice's children fully recover—or as happens in Sacks's story of Temple Grandin and her remarkable life and achievements, it didn't matter to me. There was no chance I was going to make it that far in either book.

Eventually, we hired The Consultant, though
hired
is not the right word. We pleaded with her to take Jonah on, to take all of us on really. In the beginning, The Consultant was encouraging but made no promises. She also made it clear from the start that she was the boss. It would be her way or the highway. Any suggestions we had would be noted but most likely ignored. From the moment she began, The Consultant was the person who knew what was best for our son. Her first recommendation was that we take Jonah out of daycare immediately. She'd observed him there and told us bluntly that he was lost. He's happy there, we maintained. “No, he's not,” The Consultant assured us. He has friends there, we insisted. “No, he doesn't,” she replied. Cynthia made a case for taking him out gradually, for reducing his days per week, then his hours per day. By then, Cynthia had realized herself that Jonah didn't belong in daycare, that the daycare should have told us as much at least a year earlier. But she also wanted time to accept what this change in Jonah's life and ours signified. How irrevocable it was. “Once he was out of daycare it meant he was out of the world of ‘normal' for good,” Cynthia would explain years later. Back then, we also believed we could put quotation marks around “normal,” as if the word itself existed on some kind of sliding scale of behaviour, as if it could be graded from A to F. What you learn when your child has autism is that normal is simply normal, a separate category; pass/fail.

Still, there was no point in appealing to The Consultant on emotional grounds and no point arguing. There wouldn't be time for daycare in any case. Jonah's ABA therapy was going to be intensive, as close to forty hours a week as we could manage. Our son, barely four, was going to have a busier schedule than either his mother or I had or, for that matter, ever had. Cynthia worked part-time as an art therapist. I was a freelance literary journalist, reviewing books and writing author profiles. I hadn't had a raise in thirty years. “ABA will be demanding,” The Consultant said, taking more trouble to warn us than I'm guessing she took with other parents, parents who probably seemed to her to have full-time grownup jobs and responsibilities. Her clients were usually lawyers or doctors, professionals of some kind, or executives, businessmen and women. Therapy like this was costly, after all, and they tended to be the only ones who could afford it. (We obviously couldn't, but we were lucky in this regard: Cynthia's parents volunteered to pay for everything related to Jonah's therapy and did so with no second-guessing, no questions asked, no regrets or recriminations. It was at the time a remarkable act of love and faith. It remains so. An act I know they would probably prefer I didn't mention here.) ABA could also be uncompromising, and the decree that we take Jonah out of daycare was our first inkling of that. Was it a test? Even if it wasn't, it was an indication that from here on everything would feel like a test. What would really be required of us with this new therapy, The Consultant pointed out, was consistency—and not just in Jonah's program or the team of therapists The Consultant would eventually train and hire for his program, but in Jonah's everyday life. She was talking about us.
Consistency.
The word sounded, as did so many other words in those days, less like a prescription than a threat. Like something that was beyond my comprehension and capacity.

Which is the reason I avoided the A-word back then; because I believed, down deep, that words like
indistinguishable,
like
recovery,
like
consistency,
like
autism
were beyond all of us. What was being asked of me simply felt like too much to ask. I was also afraid that whatever progress Jonah made was not going to be enough. By which I mean—and was as deeply ashamed to admit this seven years ago as I am now—enough for me. When Jonah was diagnosed, Cynthia dealt with the devastating news by springing into action, developing a game plan, researching, networking, badgering government agencies and, later, school boards, doing battle with teachers and principals, researching ABA, finding The Consultant, hiring her, hiring therapists in consultation with her, talking to strangers, other families in similar circumstances, joining online listservs and chat rooms, borrowing and begging money, holding out hope, reading books, magazine articles, blogs, whatever she could. To-do lists and memo sheets littered the house back then; you'd come across book titles and strange phone numbers on Post-it notes, calendars, and pads by the telephone.

My primary game plan was to sulk. And sigh or mutter to myself every so often, not loudly, just loud enough for Cynthia to hear and, on occasion, come running. Mostly, though, she tried to ignore my bad behaviour the way you would ignore the behaviour of a disobedient household pet. In other words, she tried not to take my sulking and muttering personally. She tried to tell herself that I couldn't help myself. You wouldn't get into an argument with a cat, for example, for clawing up the sofa, or a dog for peeing on the carpet. As a result of this kind of thinking on her part, we didn't get into nearly as many fights back then as we might have. Cynthia also knew, thanks to her early training in ABA, that ignoring bad behaviour was the most effective way to deal with it, to deal, that is, with Jonah
and
me. We were both seeking attention, after all, and she had already learned, from a behavioural point of view, that the worst thing she could do was provide it.

CYNTHIA NEVER DOES complete the chorus to “You Can't Always Get What You Want” for Jonah. She never goes on to the lyric about how if you try you can, at least occasionally, get what you need. She knows Jonah won't understand. Come to think of it, who would? Who ever does?

Want is easy, after all. Want is unambiguous. It knows no reason, accepts no excuse. It wants what it wants. Want is chocolate ice cream before dinner. Want is everything the way you expected it. It's your son typical, intact, yes, normal. As it turns out, our family motto doesn't suit my son or me. Both of us want precisely what we are not permitted to have.

As for need, that's something else entirely. The song gets it wrong, as it happens. It makes need sound uncomplicated when, in fact, it's trickier. It's about striking a bargain. What can you make do with? Minimum: you better grow up. Absolute minimum: you better figure out how to accept what's happened so you can be the father your child is going to need.

“Please, Daddy, number three?” Jonah says, holding up
Forty Licks,
making his spluttering request from the back of the car. I turn to glance at him and Cynthia frowns and points ahead, at the road. This is a significant difference between us. She recognizes there are worse things than autism—not taking notice of an oncoming truck, for instance—while I have a hard time imagining anything worse. So as she turns to pat Jonah's leg, I lower my rear-view mirror just enough to see his bottom lip quivering, his eyes welling up. I also see the strain in Cynthia's profile, the effort she's making at staying neutral and comforting our son, the effort that is always there whether I acknowledge it or not. When she turns back to look at me her expression is no longer neutral. She is silently communicating what I should already know. I should see the problem is not that Jonah is asking for a song—that's good, that's him problem-solving—it's the way he's asking. We can't give in to that. We can't reward his continued fussing.
Not now, sweetheart. We're almost home. Be consistent. Stick to the plan. Breathe.
But Jonah is fussing and pleading, headed for another tantrum, when I accidentally run a stop sign. That's when I see my wife relent. She can't ignore me any longer. I have made it dangerous to do so. She is also tired, finally, of being the only adult in the car. She exhales and nods. The third track on
Forty Licks
is “Satisfaction”: more tantrum than tune, Jagger in a rawer mood, less philosophical, more animalistic, less mature, more demanding. I glance at Jonah's suddenly beaming face in the rear-view mirror. He is giggling, out of the blue. It must be an inside joke. He has this capacity, my son, to turn on a dime, not only to forget the past, but to act as if it never existed. It is a strange gift but a gift nevertheless. One he clearly doesn't get from me. “Shmatisfaction,” he says, giggling. Cynthia places her hand on the back of my neck. “We'll be home soon,” she says, whispering under the clamour of Keith Richards's unrelenting guitar riff.

I sigh and mutter what I know she's heard me mutter countless times before: “Then what?”

When Cynthia learned she was pregnant, we were not married. We weren't really a couple. We'd met just three months before on a blind date, both of us more or less clear of relationships that had ended badly—hers, a couple of months earlier; mine a couple of years. I was forty-two, she was thirty-eight, and neither of us had, by then, any expectation of becoming parents. So our subsequent decision to get married and have a child together, albeit not in that order, came as a surprise to everyone, especially us. I remember announcing our plans at the start of a long-standing poker game with some old friends, and it took me till the end of the evening to convince them the news wasn't just another elaborate bluff.

Despite that, the decision to go ahead and have the baby proved simple for me, which explains why I was the one who ended up making it. Cynthia wanted the baby, in theory. However, she wouldn't have it if she was going to have to raise it on her own. On this point, she was adamant. She wasn't going to be a single parent. In case I thought she was bluffing, she intended, she said, to go to an abortion clinic by the end of the week. This was what's called in poker a put-up or shut-up situation. I had to ask myself: could I be counted on to stick around?

“If nothing happens, it's not a story,” Flannery O'Connor once said, and one reason I was keen to become a father was because
I
was waiting for something to happen. It didn't matter how it happened—planned, unplanned—I just wanted my life to have the kind of narrative structure and coherence it had always lacked. And abortion, whatever else you want to say about it, is a story-killer. Looking back now, I can see I was rationalizing like crazy. How else could I have told Cynthia, just a few hours after she told me she was pregnant, that everything was going to be all right? How else could I mean it? Of course, I knew nothing of the sort. But if this was a lie, it didn't feel like one.

If Cynthia had known me better, she would have known that what I do best is stick around. Sometimes to complain; sometimes out of inertia; occasionally to the point where a person might find herself wishing I wouldn't. But then she didn't know me well nor I her. So we navigated our way around our ignorance of each other and of what we were likely getting ourselves into. She cried; I consoled her. I made jokes; she reluctantly laughed. After a few hours of negotiating over a wedding date—May for her; the following May for me—we were engaged and booking a rabbi for early July.

After Jonah was born, I watched him day and night—out of the usual new parent's mix of worry and awe, but mostly out of unending interest. “The kid's better than cable,” I repeatedly told friends and colleagues. Sometimes even complete strangers had to put up with my expositions on the unexpected and unending entertainment value of a newborn. I went on about the most insignificant, unseemly things: his boogers, his bowel movements.

I had a weekly book column in the
Montreal Gazette
at the time, and, more often than not, I would manage to squeeze some anecdote about Jonah into a review or an author profile I happened to be writing. In fact, I chose books that would give me the opportunity to comment on my current state of fatherhood—like Toronto writer Dave Eddie's
Housebroken: Confessions of a Stay-at-Home Dad,
And while I managed to keep my review free of any resentment I might have felt towards Eddie for pitching his book idea about the joys of fatherhood before I had time to think of something similar, I still squeezed in an anecdote about my efforts at teaching Jonah to do a spit take. (He was, at ten months, a natural, though it was, I realize, more of a drool take.) The editor of the book section was a friend, but eventually his journalistic instincts kicked in. “That's it,” he finally said, announcing a moratorium on infant-related anecdotes. “The kid is off-limits for the next six months.” I towed the line for a few weeks, but after that I couldn't help myself. Besides, I knew my editor was wrong. I couldn't imagine anyone not being interested in my baby or, more to the point, what I might have to say about him.

Now, it has become harder to remember what my life was really like back then. Was I that oblivious to everything? Was I really that happy all the time? I remember being tired, of course, and finding it difficult to get any work done. There's a photograph Cynthia took of Jonah and me sitting next to each other on our living room couch. A review copy is open in my lap, but my eyes are closed. Jonah's are closing. The truth is: once Jonah was born I couldn't read more than a few pages of any book without nodding off. Literature seemed beside the point anyway. Compared with whatever it was my son might be up to.

What I really don't remember from that time is doubt. Can you imagine it? Ambivalence out of my life, gone like a fever—not so much vanished as broken, dissipated. No wonder books were losing their appeal. Besides, I was an exceptional father or fast on my way to becoming one; I knew this with a kind of certainty I'd never experienced before. This was going to be a snap. Now, I wonder: could all this be true? Now, it's almost impossible to remember the way our lives were, to remember a time before autism.

A FEW WEEKS BEFORE Jonah was born I began telling jokes directly to Cynthia's belly. It was like being on the sidelines of a football game next to one of those oversized convex microphones the NFL Network uses to record the sounds of the game. I could imagine her belly picking up everything—not just my words but all my unexpressed hopes and fears as well. I'm aware, now, of how corny this sounds. But I wanted to give the kid a preview of how much fun we were going to have together. Some people play Mozart for their unborn children, read to them from Shakespeare, reel off math problems, or speak Italian, all on the off chance it will have an unquantifiable influence on the unpredictable future. I was giving my son the gift of shtick. Shtick is in my DNA, after all. Like the Yiddish I've never spoken but feel I could speak if forced to. Like my compulsion to make everything into a joke, everything palatable. Throw it all against the wall and whatever sticks—that's shtick.

“Here we go,” I would say, snuggling up against the small of Cynthia's warm back. “Okay, kid, who's on first?” This was turning into such a persistent, irritating habit on my part that sometimes I would wait until Cynthia was asleep before I launched into the evening's routine. That way I didn't have to see the look of good-natured condescension on my wife's face when she heard me saying, “Knock, knock....”

At the time, my favourite joke was the one about the Jewish grandmother who is entrusted with the care of her grandson for the day. She decides to take him to the beach and outdoes herself. Packs a picnic lunch, in one of those big wicker baskets, with all the little darling's favourite foods, peanut butter sandwiches with the crusts cut off, fruit scored into the shapes of stars, juice in a sippy cup, and more cookies than she knows is appropriate. But so what? She'll swear the kid to secrecy. Don't tell your mother.
Her daughter-in-law.
It so happens, it's a glorious day. Not a cloud in the sky. But she's prepared for that too. She's got suntan lotion on every inch of the kid, SPF 50. She bought him a new hat, the foreign legion kind with a flap that covers the sensitive area at the back of his neck. The hat is khaki, very snazzy. $29.95. No bargain, but money's no object.

The woman and the boy approach the beach holding hands. Meanwhile, she's on the lookout for stray dogs, broken glass, jellyfish, pedophiles, terrorists, falling asteroids, you name it. They sit under an orange-striped umbrella, the boy building an elaborate castle with a new set of sand toys. The grandmother is
qvelling,
beaming. She's thinking about all that she's going to teach him one day, about the chance to see him grow up to be who knows what: a movie star, prime minister, a brain surgeon, an orthodontist maybe? Did I mention it's a glorious day? Did I mention the hat?

Then, out of the corner of her eye, the grandmother sees a dark cloud approaching. She knows she should run. But she's an old woman with arthritis she wouldn't wish on Hitler and it's not so easy to get up. By the time she does, it's too late. The wind and water are swirling. One particular wave, malevolent and purposeful, picks up her grandson, just him, out of maybe one hundred and fifty other children on the beach, and carries him out into the now turbulent ocean. The grandmother is speechless. Then she screams. She thinks all the terrible things you might in that moment; how she's going to have to tell her son and his wife.
Her daughter-in-law.

She thinks how her life will never be the same again, how this one moment—which isn't even her fault but who's ever going to believe that?—will change everything. So she drops to her knees, clasps her hands together, and prays out loud. Before long, she's shouting. She couldn't care less who hears. “Dear God,” she screams over the rumble of the storm, “please spare my grandson, I'll do anything, just don't let him drown.” Then she bows her head. An instant later, the skies clear and she can see the crest of another giant wave in the distance, and before she can believe what she's seeing, her grandson reappears, on the beach, beside her. He's unfazed, hardly wet. She hugs him hard, pinches him even, to make sure he's there, intact. Then she gets to her feet and looks up at the heavens, and addressing God, a God of infinite wisdom and mercy, she says, “He had a hat.”

In retrospect, I can see there were probably better, more appropriate jokes I could have been whispering to my wife's belly: ones that didn't have the inevitability of dissatisfaction as their central theme; ones about not counting your chickens before they're hatched, for instance. I learned to be superstitious from my parents the same way they learned it from theirs. My mother and father were born in Montreal but that East European shtetl nonsense isn't easy to discard. My father never boasted; he believed in keeping a low profile. According to my sisters, my mother routinely attached a red ribbon to her bra strap to ward off the evil eye. She never would have dreamed of buying a baby gift, for instance, before said baby was born, before all his or her toes had been accounted for.
Don't hope for too much.
That's what I was brought up believing. Don't crow; don't
qvell.
Enough, you should be telling yourself, is enough. I was going to have a son.

WHAT I KNOW ABOUT loss I learned thirty-three years ago when my mother died of lymphoma. It seemed then and for a long time like all I needed to know. So much so that when my father died, also of cancer, a little more than a year after my mother, it felt as if there was nothing left to learn. It probably would have made sense for me to see a therapist then, according to Cynthia, but I'm guessing it never occurred to me. Instead, Cynthia theorizes, I came away from this experience at twenty-one incapable of believing things could get better. I developed a philosophy of hopelessness. I became an expert at expecting the worst. I learned to follow the path of least resistance: in other words, to give up, concede. I took solace in pessimism. It probably didn't hurt, Cynthia suggested, that I was young and impressionable and reading gloomy books all the time: Samuel Beckett, Thomas Hardy, Virginia Woolf. “But you were a kid then and you're not any more,” Cynthia says. The point is well taken: despair is a luxury we can no longer afford.

Cynthia is a therapist, an art therapist to be exact, and she's passionate about what she does. She works with children, as young as three and as old as eighteen, who end up in Montreal's English-speaking youth protection system. She's a problem-solver. In addition to helping clients work through their challenges by making art—drawings, paintings, sculptures—she writes out personalized treatment plans. One of her methods is to assist her clients in externalizing what is often an internal issue. For example, a child is encouraged to fight her “Temper Monster” rather than her siblings.

And, yes, Cynthia sometimes takes her work home with her, where there is no shortage of problems to be externalized. This also explains why I sometimes find myself being analyzed more or less without my consent. Evidently, step one in my personalized treatment plan has me drawing a picture of a creature, a bear or gorilla, something hairy and chunky at any rate. Step two: I give this creature a name that sums up his personality. Let's call him the “Grumpy Monster,” for example. “Never mind that it's too on the nose,” Cynthia reminds me. “This isn't a literary exercise.” Step three: I vanquish this creature in simple ways. No big showdowns. For instance, I could work on waking up in the morning in a good mood instead of having that automatically hopeless look on my face at the sound of Jonah babbling in his room about yaks and zebras. I could also, Cynthia suggests, ask her how she is feeling instead of asking her, as I invariably do, what's wrong? “You see the difference, don't you?” Cynthia says and then answers on my behalf. “One question expresses genuine concern for how I am feeling; the other expresses your concern about how I might make you feel. So why not just say, ‘How are you this morning, my dearest darling?'” There are, evidently, many ways to slay a Grumpy Monster.

At our wedding reception, a friend joked about the upside of being married to a therapist. “Think of how much money you'll save on shrinks,” he said. He was kidding, but he had a point. My treatment plan notwithstanding, when you first find yourself in a succession of waiting rooms, waiting for child psychiatrists and psychologists, occupational therapists and speech pathologists, the countless, escalating array of experts you never expected to consult,
not for your child,
when you are hearing opinions you never expected to hear,
not about your child,
it helps to have someone around to decipher what's being said. You need someone to cut through the bullshit because you can bet there will be an awful lot of it.