Bad Animals, page 5
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.
“I know, it’s a great deal to absorb,” Dr. T. said. “The learning curve can be steep.”
Cynthia was taking notes and asking a few questions, even though she had begun her research a year earlier. The Consultant was already hired, and she, in turn, had hired and trained four therapists, three young women and a man, university students, pursuing degrees in psychology or teaching. Cynthia and I were trained, too, and Jonah’s program—thirty-six hours of intensive ABA therapy—was under way. Our dining room had already been transformed into a cross between a playroom and a research laboratory. We weren’t a family any more. We had become a team, a business, a lab experiment.
Before we left her office, Dr. T. reached into her drawer and handed Cynthia some literature to read as well as a photocopy of an article entitled “Welcome to Holland.” I glanced at the title and the author’s name—Emily Perl Kingsley—over Cynthia’s shoulder. Meanwhile, Cynthia quickly tucked it into her copy of Exceptional Family.
On the drive home from the doctor’s office, Jonah asked again for “a bad day” and he beamed when his mother, who was sitting in the back of the car with him, agreed. She usually saved this kind of treat for his bedtime. But that day was different, exceptional. That day, he was indulged. That day, if I remember correctly, we stopped for an ice cream before lunch. If we didn’t, we should have. Cynthia was getting good at taking requests for these oddball narratives. She had a talent for escalating the badness in a story, transforming herself into a kind of Scheherazade of unhappy endings, regaling Jonah with an account of the worst things that could happen ever: the worst-dessert-ever, the worst-punishment-ever, the worst-animal-ever. And as Cynthia’s story unfolded, Jonah braced himself in his booster seat, latching on to the downward spiral of events like he was holding on to the security bars on one of those amusement park rides. Free Fall: the ones that go up very slowly and come down super fast.
That day, Jonah was treated to the tale of Ellie the Elephant, who wakes up on the wrong side of the bed in the morning, puts on the wrong trousers, gets a cantaloupe stuck in her trunk, jumps on a trampoline which breaks, and is generally disappointed every hour on the hour. Jonah listened intently, mainly so he could correct any detail Cynthia got wrong, any word she omitted.
“Give me an ‘instead of,’” Jonah said. By this he meant include the words “instead of” in the story. For instance, Ellie ordered blueberry pancakes with syrup, but “instead of” getting what she ordered she got “pickles with yucky mustard.” So what did Ellie do? She stomped on every table in the restaurant, every table and every waiter, and every bit of food. There’s a literary lesson in these stories Jonah demanded, still demands, and it’s always the same. Jonah understands what some of us never manage to, what some of us have an unfortunate habit of forgetting: that to not get what you want is bad, truly bad, but it’s nowhere near as bad as hoping for more than you get. You want to tell a really sad story, a crushing one, that’s the component you’re looking for.
In his own way, Jonah has always been a perfectionist, but a perfectionist forced to operate in an unapologetically imperfect world. A world that is, as far as he’s concerned, in a constant state of chaos and upheaval. As a consequence, he’s unnerved by change. He thrives, instead, on knowing only what he knows and knowing it perfectly. This is, I realize now, how he makes sense of the world. It’s why the questions he asks us, ninety-nine percent of the time, are questions he knows the answers to. In this respect, in his need for assurance and certainty, for meaning even, he is like all of us, only more so. He’s making it up, the meaning, I mean, as he goes along.
Here’s something else I’ve learned about my son: he deals with disappointment the same way I do—grudgingly. Our job then, as it is now, is to rescue him from isolation, to turn his attention to the outside world. To simply engage him has always required tremendous effort. I sometimes think that’s because when it comes to the world and what it has to offer, Jonah has always been singularly unimpressed. It is yet another way in which we are more alike than different.
“SO LET’S SEE IT,” I said to Cynthia once we’d returned home from Dr. T.’s office. There was no way to talk in the car with Jonah there, no way to analyze whether the second opinion we’d waited a year for and finally received was better or worse news than we had expected or exactly what we expected. We were, however, numb again, as we were after Jonah’s first diagnosis.
“See what?” Cynthia said. She was busy preparing Jonah’s lunch.
“The article—the one the doctor gave us ... gave you before we left. It looked like some kind of story.”
“It’s nothing, really, just what they give everyone, I’m guessing, when ...”
“When what?”
“I don’t know ... when they don’t know what else to say” Cynthia finally handed me the sheet of paper.
“Welcome to Holland” is intended as a pep talk for parents going through the same sort of experience its author went through. The premise is: you’ve planned a trip to Italy, to visit the Sistine Chapel, the Trevi Fountain, even learn some Italian, but when your plane lands you are, surprise, surprise, in Holland. At worst, the story is harmless, so how come I couldn’t read it without stopping to sputter out some comment like: “Give me a break.” Or: “You’ve got to be kidding.” Eventually, I stopped reading. I couldn’t finish it, not even a single page of helpful advice. Instead, I contemplated throwing something—a plate or vase seemed about right, but I’m a civilized man, if not an especially mature one, so I picked up an orange and threw it, as hard as I could, at our kitchen wall.
“She’s comparing this ... this ... to Holland. We’re not in fucking Holland.” Cynthia glared at me. I forgot that Jonah was still in the room, waiting for his lunch. My wife patted him on the head and dragged me into the bathroom. She closed the door behind her and folded her arms across her chest. This was an argument I was going to lose; I just wasn’t ready to lose it yet, which is to say not without a futile, hurtful fight.
“Don’t you see how much this analogy sucks? Holland! Holland would be fine. Fucking fabulous,” I said, trying, though not hard enough, to keep my voice down. “Holland has tulips ... wooden shoes ... windmills ... hashish ... hookers in the window. They used to anyway. I have news for you and the doctor and for Ms. Emily Perl Kingsley, whoever she is, this is not Holland we’re in. Not even close. This is like thinking you’re going to Italy and you find out you’re in ... in ... hell.”
“She is just saying you have to try to, I don’t know, make the best of a bad situation, that’s all.”
“That’s what she’s got, that’s what we get—the best of a bad ...”
“Yes, all right. Go ahead. Do what you do.”
“What?”
“This is something to hold on to,” she said, tearing the paper as she grabbed it back from me. “And, you want to know something, I appreciate that. I appreciate having something I can hold in my hand. Or put up on the kitchen bulletin board or I don’t know what....”
“I won’t have this in my house.”
“You and your bitterness. I want you to tell me something,” Cynthia said. “This self-pity—is it going to stop some time soon? What is it you do want? Do you want out? Then say so.” She was close to tears, which I knew I could prevent if I made a gesture, if I put my arm around her, said a single kind word, simply apologized. Instead, I folded my arms tightly across my chest and rocked back and forth.
