Bad Animals (4 page)

After my parents died I found a second-hand copy of Elisabeth Kübler-Ross's
On Death and Dying
in a university bookstore. This was the late 1970s and I didn't have to read the decade-old groundbreaking manifesto on loss to know what it said. Kübler-Ross and her bestselling five-stage theory were already famous by then. Like most of her readers who had experienced the death of a loved one, I applied her ideas retroactively. Like most readers, I appreciated that
On Death and Dying
came with a social science gravitas that trumped the clichés and platitudes I heard at my parents' respective shivas from a mix of well-meaning but obtuse relatives and friends.
Life goes on.
That seemed to be the best advice anyone had to offer. Not Kübler-Ross: she offered stages and who doesn't want stages? Five seemed like a reasonable number. Not too few, three, say, so you could dismiss the whole thing as simplistic feel-good advice. Not too many so you couldn't, with a little effort, memorize them. And once you did, you could check them off. Denial, you bet. Anger, sure: I'm pissed, it's true. Guilt, okay fine, not a problem, got that. Bargaining—do it all the time. Acceptance—that's done, more or less. Check and mate.

“People love the stages,” Kübler-Ross acknowledged later, and, it's true, she was on to something: I'd felt all those things she said I should after my mother died and then felt them again after my father died. I rushed through those stages like a geeky teenager mastering a video game. I wasn't going to stop until I, what, won? Reached Level 5? I was good at it, too, so good I couldn't help feeling a little concerned about the ease and efficiency with which I'd advanced from anger to acceptance.

Kübler-Ross's stages would also become an all-purpose explanation for everything from a bad break-up to the loss of a pet. Cynthia and I heard it invoked a few years ago while sitting through yet another seminar aimed at the families of children with autism. We were a growing and suddenly sought-after demographic. We spent our weekends at conferences, lectures, potlucks, and get-togethers in the first year or two after Jonah's diagnosis. One psychologist at a conference told her small audience of mostly mothers that it was okay to mourn when you first learned your child had autism. This was a kind of loss, after all, a loss of expectations, of hope. The five stages appeared as part of her PowerPoint presentation, the tiny pink beam from her laser wand stopping briefly at each stage.

“Kübler-Ross was wrong, you know,” I told Cynthia at home later, after I'd done some Googling. “I saw it on Wikipedia or somewhere. Anyway she admitted her doubts in a book she wrote when she was dying. It turns out her evidence was strictly anecdotal. You shrinks, I'm telling you.”

“Kübler-Ross was a brilliant therapist,” Cynthia said. “Obviously, her theory doesn't make sense in your case, sweetheart, but that doesn't mean she was wrong. It just means you've gotten stuck in a lower stage.”

“Like a monkey?”

“What I mean is you've never accepted your mother's death, not really. You always say you got over it too fast, but it was thirty years ago and, ask yourself, are you over it yet? No. You're angry, sad, guilty. There's a part of you that doesn't believe it happened. Some part of you is still way back at those first stages—denial and anger.”

“I wasn't asking to be analyzed.”

“Of course, you were.”

Grief can't be arranged in stages: at least not when it comes to autism. What is intended to be most comforting about Kübler-Ross's blueprint for overcoming loss—the predictability, the linearity, the end in sight—is not available to the parent of a child with autism. Yes, you experience anger and denial and bargaining and the rest of it, even acceptance, I suppose, but you experience it daily and in no particular order. With autism, forget stages, think revolving door: everything comes and goes. Think rollercoaster: you're up, you're down. In
On Grief and Grieving,
Kübler-Ross's long-anticipated 2004 sequel to
On Death and Dying,
she writes: “I now know that the purpose of my life is more than these stages. I have been married, had kids, then grand-kids, written books, and traveled. I have loved and lost, and I am so much more than five stages. And so are you.”

JONAH WAS BORN nine days late. As Cynthia's due date came and went, there was time to think about the usual things, the important things—how our lives were going to change, what kind of parents we were going to be. But we were fixated, instead, on what Jonah was going to look like. We lay in bed that last week staring up at the light fixture on the ceiling above us. It was round and translucent and had a rather large, lumpy protuberance in the middle. With the room in shadow, it resembled an extremely goofy-looking person. We called it Ziggy—a nickname for zygote.

We had reason to worry. Just the thought of my nose and my wife's nose amalgamated in the middle of our poor, unsuspecting baby's face was enough to give us recurring and matching nightmares. There was also my height or lack of it to consider; and Cynthia's bad eyesight, her questionable taste in sweaters. We'd lie in bed, spinning out tales about how our beloved four-eyed pipsqueak would somehow manage to overcome his parents'
nebbishy
genes. How he would somehow not suffer through childhood and adolescence the way we had. How he'd make do with my self-deprecating sense of humour and Cynthia's implacable backbone. But all our musings ended the same way: with little Ziggy unable to find a date for the junior prom, with him being picked last for basketball. We couldn't have been more of a cliché.

A while back, Cynthia and I had a single session with a family therapist, a couples counsellor really—”Call me Jeff,” he said, shaking my hand—who told us that the key to happiness was managing expectations. The problem was simple, according to Jeff: the more distance you allow between what you want and what you can reasonably expect, the unhappier you are bound to be. German philosophers had a word for this:
Weltschmerz.
Jeff was a nice fellow, about my age, the kind of guy I might have gone to school with or played softball with. But I was looking for a breakthrough—
In one session, sweetheart?
—not the kind of information I'd already read in a few thousand novels and poems, from Emily Dickinson to Philip Roth. Life is disappointment; expect less. That's it. “Can't they tell you something you don't know?” I asked Cynthia in the car on the way home.

The thing is, before Jonah was born, we'd done exactly what Jeff was suggesting; we'd managed expectations. In fact, we were experts; we were
Weltschmerz
-free. Or so we thought as we braced ourselves for an extraordinarily funny-looking kid. Then Jonah was born and he was beautiful. I know every parent feels this way and that every parent can't, objectively speaking, be right. There have to be mousy, unpleasant, irritating kids. Where do mousy, unpleasant, irritating adults come from? But we
were
being objective. (What I'd realize later is that physical attractiveness is made note of in most of the autism memoirs I've read. It is, Clara Clairborne Park writes in
The Siege,
“one of the inexplicable items” in the disorder, a way, she speculates, of making a family's burden lighter.) For weeks, maybe months after Jonah was born, Cynthia and I would look him up and down, then
assess
each other, and shake our heads. It wasn't just that he didn't look anything like either of us, he didn't look anything like the other newborn infants he shared the hospital nursery with, most of whom resembled aliens. Jonah had a full round face and an undented head. He was bigger than the other babies. He cried less. He seemed, when it came to baby behaviour, self-possessed, confident. I dubbed him the Mayor of Babytown.

The day Cynthia went into the hospital to have labour induced, I read a newspaper story about the movie-star couple Uma Thurman and Ethan Hawke and how they were about to have a baby, too. Our private joke, after Jonah was born, was that the infants, theirs and ours, had been switched at birth and that somewhere, in Hollywood or Martha's Vineyard, our real kid had a nanny and a pony and a swimming pool and was living a privileged, decadent life. He was destined for a career as a child actor, a series of rehabs, and a lifelong flirtation with Scientology. John Travolta would be his godfather. Quentin Tarantino his crazy uncle. We imagined, too, that Uma and Ethan loved him dearly even though they couldn't figure out how they, of all couples, had ended up with such a dweeb.

Jonah went from being a beautiful baby to an irresistible toddler to a handsome little boy. Put him on a motorcycle, in a leather jacket, I said the day he turned one, and there you have it: a young Steve McQueen—all right, extremely young. As he got older he only got better looking. It was almost embarrassing. There was no way to account for his exquisite cheekbones, his strong chin, his light brown hair, and his perfectly unobtrusive nose. The pale blue eyes were hardest to explain. So much so, Cynthia kept threatening to punch the next person who made some dumb comment about where exactly he'd gotten “those baby-blues” from.

In a few months, on Christmas Eve, Jonah will turn eleven. He is not tall for his age, though he will probably end up taller than both his parents. Cynthia and I still find ourselves staring at him and wondering how he ended up looking like he does. We're not the only ones. Jonah has an affinity for his own reflection, so much so we had to cover the two full-length sliding mirrors in our hall with contact paper and then put up a more discreetly located mirror in his bedroom. The Consultant advised us to designate it “the silly mirror,” and Cynthia made a sign saying as much. This was where he would go, where he still goes sometimes, to make funny faces at himself or say funny words. It was initially intended to be an acceptable outlet, a substitute for the inappropriate bouts of face-making and staring at himself he was prone to—in department stores or the homes of relatives and friends. This has worked up to a point. Now, I'll catch him posing in the mirror, putting his hands in his pockets, cocking his eyebrow, and shooting himself a sweet, kooky grin.
Show time,
I think he's thinking. He can't seem to take his eyes off himself and won't until I push him on to the next thing. “Jonesy,” I'll have to say, “enough cuteness.”
But why?
In that instant, as he faces the mirror, I watch him and wonder what's going on in his head. I wonder how he can look at himself for so long and so uncritically. It's a strange gift, but a gift nevertheless. To not see a gap between who you are and who you hoped to be. Facing “the silly mirror,” my son still looks extraordinarily self-possessed. As if he hasn't a worry in the world. Meanwhile, Cynthia and I cling to our shallowness, hoping Jonah will remain attractive, hoping too that his attractiveness will be his ace in the hole, one thing he will never have to worry about. “The world is unfair,” Park writes in
The Siege
“and in a pretty child the world will overlook a great deal.”

JONAH TOLD HIS FIRST joke soon after he was born. Jokes are narratives in a nutshell, little bits of truth. They are uncomplicated. But even the dumbest ones, when they work, maintain their own internal logic. They are the purest form of storytelling: premise and punchline. You get it or you don't.

Jonah was lying on his back on his changing table when he sneezed. It shook his tiny body and left him startled by this new possibility. I looked down at him and immediately cracked up. After a few moments, I was laughing hard enough to attract Cynthia's attention.

“What is it?” she called from the other room.

“Come, quick,” I said. We were new, first-time parents. It wasn't unusual for the other person to drop whatever they were doing—falling asleep, finishing a book, taking a shower, sitting on the toilet—and come running, invariably with a video camera.

“What?” Cynthia said, out of breath. “Is something wrong?”

“There. Look there,” I said, pointing to a tiny trace of mucus on Jonah's forehead.

“That's disgusting,” Cynthia said, reaching for a tissue.

“Wait, you're missing the point. Think about it: it came out of his nose and virtually did a one-eighty. It's a miracle of aerodynamics, at the very least. Better yet, it's a stunt, a prank.”

“It's a booger,” she said, wiping Jonah's forehead and leaving the room, shaking her head and rolling her
eyes.
In our relatively short time together, I was responsible for her having learned to do both simultaneously.

“You don't get it. It's his first sight gag. He's a natural. And,” I said, leaning down to whisper the first rule of comedy in my son's ear, “it's funny, Jonesy, because it's true.”

Has it made you a better father?

The question is put to me by a local CBC radio producer and it catches me off-guard, though I know it's something I should have considered by now. This is a pre-interview. It's the job of the young woman on the phone to help me figure out what I might say in advance of my live interview the following morning. I've been booked on this program because I've written a short personal essay about Jonah and me and autism. That would be the “it” she's referring to. In a way, I've been anticipating answering this question, aloud, in public, for a while. I've certainly had plenty of time to think about it and figure out what it presupposes. Now, here's my chance.

“Sure,” I tell the friendly stranger on the other end of the phone, “it can be tough. But an experience like this teaches you what you're capable of. I've heard people, other parents, I mean, say that they're grateful for what they've come to see as an opportunity. I don't know if I'd go that far, but life gives you lemons and, well, you know.”

Evidently, the proof of how well I've adjusted to this out-of-the-blue circumstance is in the fact that I have written about Jonah in the first place. No need to mention that it has taken me years or that it's only twelve hundred words.
What matters is you've done it, sweetheart. You've told part of our story anyway.
After the essay first appeared in a local magazine, I also received several supportive emails from acquaintances as well as a few phone calls from other parents of kids with autism. This essay, its hard-earned existence, is an indication of how someone like me, like any one of us, copes and is able to transform private trouble into a kind of public betterment. There is the possibility, because of it, for increased awareness, attention, and empathy. This essay, which won a minor prize and will, as a result, be broadcast on the radio, is a demonstration of my resilience. Lemons = lemonade.

I answer all the producer's questions quickly, easily. How did we find out about Jonah? His daycare complained he wasn't showing sufficient interest in gluing. How did we react? We thought they were kidding. My wife and I joked about it.
Can't glue? What did we do wrong? How will he ever survive in a world so dependent on a human being's ability to glue?

I also jump at the chance to talk in the pre-interview about the book I am supposedly working on, the book which this essay is supposedly excerpted from.
Solace: A Father's Chronicle of Coping,
that's the title, I volunteer. “Why
Solace?
Good question. I guess because I feel as if the almost seven years since his diagnosis have been a kind of journey, you know, out of despair and towards acceptance. Autism is tragically misunderstood. Most people don't know what it is exactly or the toll it takes on families. That's one thing I hope I can help correct—here but also in the book eventually. How much have I written? Of the book you mean? Well ...”

The answer, again, is twelve hundred words, on the nose, but I manage to keep this to myself The implication is that this book, when I finally finish it, will be upbeat, illuminating, ultimately helpful. It will provide, as advertised, solace. That's what I've managed to convey in all my grant applications anyway. All three of my successful grant applications, I should add. Meanwhile, I'm on a roll in the pre-interview. I can't seem to stop talking.
Why aren't we on the radio right now?

“What people don't always realize is that autism is not just Dustin Hoffman in
Rain Man.
No, it's a broad spectrum of developmental delays. There are children with all kind of deficits and all kinds of potential. The face of autism is also the face of my son, a beautiful, affectionate little boy who knows all about animals like the slow loris. Do you know what that is? It's a primate. Don't worry. I didn't know what it was either until he told me. My son also does long division, watches Katy Perry and Bing Crosby videos on YouTube. He rides a bike and loves joke books. He makes up his own jokes, too. Want to hear his latest? What do you call an animal with antlers who drinks too much?”

“I give up,” the producer says indulgently.

“An elkaholic. He made that up himself. I mean, mostly. Not bad, huh? He loves language. He and I are also considering writing a book together. About animals, it has to be about animals, and, maybe, eventually, about autism, too, a kind of beginner's guide, maybe, you know, something that would be useful for both of us, maybe for lots of people.”

No, the pre-interview could hardly be going better or going on longer. I haven't been this impressed with myself in years. I'm serious without being maudlin, funny without being glib. It's at moments like this I can almost convince myself that this project that's stagnated for nearly seven years is bound to open some minds and break some hearts. There is, however, one problem with what I'm telling the producer as well as what I'm going to say in the actual interview tomorrow morning. It's not true—not in any real way. My little essay isn't about potential or public awareness or, heaven help me, personal gratitude and growth. I couldn't be less grateful or have evolved less since finding out about Jonah. The essay is my tantrum, and my tantrum isn't likely to make anyone, no matter how they parse or misinterpret it, feel any better. Obviously, the woman interviewing me hasn't read the essay. But if she were to, if she read it backwards, forwards, sideways, it wouldn't matter. She wouldn't even need to finish it or search too far between the lines to know that what I've written, my so-called triumphant, consoling tale of fatherhood, is a self-pitying rant, a primate chest-thumping. It is, essentially, a bummer.

ALL I COULD THINK OF was the old joke. The one about the man who's told he has six months to live. “I want a second opinion,” he says. “Fine,” his doctor replies, “you're ugly too.” I laughed out loud, an involuntary outburst in a crowded, gloomy waiting room. All around us, parents, mothers mostly, hovered over their children, boys mostly, shushing them, pulling their fingers out of their noses or pants or out of the air, fighting a valiant losing battle against their child's overwhelming inclination to fidget or babble or wander away. I knew next to nothing about spectrums and stims back then, but I still remember thinking:
What is normal behaviour for a four-year-old and how do you recognize it?
By comparison, Jonah was calm. He was seated beside me, immersed in an animal alphabet book he'd dug out from a pile in the corner, doing what he always did then, what he still does when he can get away with it. He was checking the final pages to make sure the book ended as it should with a yak and then a zebra. It's the equivalent of happily-ever-after for him. I patted him on the head, a reward for his composure.
Reinforce, reinforce, reinforce,
as we'd already been advised repeatedly by The Consultant.

“Ugly, too. That's the second opinion, get it? It's a classic punchline,” I said, nudging Cynthia. She frowned and I did some fidgeting myself, imagining the conversation she and I would be having if we were alone.

Jokes, sweetheart, really? Here? Now?

I'm funniest when I'm most miserable. You should know that.

That may be true, but, under the circumstances, it wasn't unreasonable for Cynthia to expect I'd give it a rest for once. We were in The Montreal Children's Hospital, after all, not some rinky-dink rookie psychologist's office, the way we had been for Jonah's first diagnosis a year earlier. This time there were teams of experienced specialists to meet, teams who had presumably dealt with autism and with the parents of children with autism for years.

“All right, then, a priest, a rabbi, and a psychiatrist ...”

Cynthia ignored me and returned to the magazine she'd discovered in the waiting room:
Exceptional Family: Canada's Resource Magazine for Parents of Exceptional Children.
“Listen,” she said and began to read me a passage from the editorial page about “blessings in disguise.” Now, it was my turn to suppress the urge to roll my
eyes. Quite the euphemism,
I almost said but restrained myself. You won't read this in any magazine, but when you are the parent of an “exceptional child” this is one of the first lessons you learn: try not to say what you're thinking. If you do, be prepared for the consequences because there will be consequences.

Dr. T. was a soft-spoken, smartly dressed woman in her early-fifties. She had red hair and a faint trace of freckles. A model of a concerned professional, she managed to balance kindness with detachment. It was a characteristic of the mental health care profession I had yet to get used to. There are probably sound reasons for this kind of practised impersonal compassion, but the only one I can think of, having now seen it too many times to count, is that it's because they know that no matter what they say they're only guessing; that when it comes to deciphering the vagaries of human behaviour and the human brain, in particular, the odds will always be against them.

I also couldn't shake the feeling that Dr. T. wanted to get this, likely her last appointment of the morning, over with. She kept glancing at the telephone on her desk like she was willing an interruption. In any case, there was nothing especially new she could tell us, which is what we suspected and feared just the same. She spent a few minutes examining Jonah, asking him his name, which he got right, and asking him to identify the colour blue, which he didn't. Mostly, though, there was a long list of questions for us.

“Does he rock back and forth?”

“No.”

“Does he harm himself?”

“No.”

“Does he flap his hands?”

“No.”

“Have you had his hearing tested?”

“Yes.”

“Does he mix up his pronouns—using
you
in place of I, for example?”

“Well...”

“Can he hop on one foot?”

“What?”

“When did you first notice a problem?”

“We have no idea—from daycare, probably.”

We passed or, more likely, failed this test as Jonah bounced happily on a small trampoline in the corner of Dr. T.'s office. It was unusual for him to take to any toy or activity right away, but he did with the trampoline. (The next day Cynthia bought one for his therapy room.) Still, he'd stop bouncing sometimes to catch his breath, to
assess
the fun he was having before he decided it was time to have more. There is, in Jonah, a delight, a talent for it, that I hoped the teams of doctors and specialists would see, would take note of in their charts. But I was afraid they'd overlook it in the same way I so often did.

By the way, the trampoline wasn't there for Jonah; it was there so Dr. T. could talk to parents like Cynthia and me with a minimum of interruptions. Obviously, she knew the kind of kids, hard to quiet and distract, she was dealing with. Still, in that fluorescent-lit office, on that glum day, Jonah was impervious to judgment, to evaluation. For him, nothing seemed about to change.

“Mommy, mommy,” he shouted, “give me a bad day.”

Jonah's speech always made sense to us even if it didn't always make sense to other people. Dr. T. glanced at us and smiled sheepishly. Other people had no way of knowing, for instance, that what Jonah wanted when he said “give me a bad day” was a story
about
a bad day. He might also ask for a “bad sport” or a “broken promise.” Typically, he wanted a story that he'd heard before, the more times the better, a story with multiple characters, animals preferably, getting into terrible trouble and acting badly as a consequence. He greeted the accumulation of bad news by pretending to cry, but his glum expression hid an adorably unsympathetic grin. He was always quirky, and we always loved his quirkiness. Now, it looked like it was about to become official: we were going to have to learn to call it something else. PDD NOS or Pervasive Developmental Disorder Not Otherwise Specified was the deliberately vague label the first psychologist had used.

I didn't understand then what I understand now, that adding the “not otherwise specified” served a purpose in diagnostic lingo. It covered a multitude of misinterpretations and miscalculations—sins, in other words. The British autism specialist Simon Baron-Cohen, a cousin incidentally of
Borat's
Sacha Baron Cohen, refers to PDD NOS as “the part of the autism spectrum we understand the least.” That tacked-on phrase—”not otherwise specified”—also served to underline for me that what the screenwriter William Goldman once observed about Hollywood applied as well to the fields of psychology, psychiatry, psychotherapy, social work, you name it: “Nobody here knows anything.” With her second opinion, Dr. T. revised PDD NOS to the more encompassing but somehow also more specific ASD or Autism Spectrum Disorder. The label “high-functioning” came up again, though Dr. T. didn't mention what it meant in specifics. It was clear it could mean anything or nothing; it was almost as elusive as “NOS.” What Dr. T. didn't tell us was whether Jonah would have friends, whether he'd hold up his end of a conversation. Or whether he'd be able to have a bar mitzvah, go to college, or even graduate from high school, drive a car, buy his own clothes, live his own life, be independent, be happy, stay happy. Dr. T. focused, instead, on what there was to be grateful for. Jonah talks. He makes eye contact. He is affectionate. He seems content. Delighted's
the world you're looking for doctor,
delighted. With luck and hard work, he could go to school, an integrated school if that's what we decided, though he might need support, a shadow or aide. She didn't recommend any treatments, but she mentioned acronyms like ABA, or Applied Behavioural Analysis, and RDI, or Relationship Development Intervention. And, of course, there were always new theories and therapies to explore. There were books we could buy, lots of them, diets we could try, medication we could consider—more experts we could talk to.