Bad Animals (20 page)

“You want to look bad, the worse the better,” she said. “People will naturally feel sorry for you. That's not the problem. The problem is to not come across as pitiful.” Write yourself a scene in a bar, she added, where you're drunk and horny and contemplating an affair with a stranger you've just met.

“I don't go to bars. I don't like strangers,” I told her.

“Well, I'm sure you'll think of something awful you could do or you've already done,” she said. I promised to get back to her on that. I am hopeful. As it turns out, there's more than one way to be an asshole. In the meantime, I'm also hopeful that Richard Heene will make a comeback by the time I've managed to write a decent book proposal and an outline—by then, he should be working on a memoir of his own—because it occurs to me that you could, without trying too hard, without being an incisive critic of our current culture, make a convincing argument that Heene's determination to exploit his son and my writing a book about Jonah are not all that different. Jonah might as well be my balloon boy.

THERE'S A SCENE IN Philip Roth's memoir
Patrimony
in which the author discovers his elderly father, Herman, in a bathroom, where he has, in his words, “beshat himself.” With unfailing tenderness, the son cleans up the father and the mess he has made. This incident is, in Roth's obsessively detailed description, monumental. Here, Roth does for dealing with a shit-spattered bathroom what he once did, in
Portnoy's Complaint,
for masturbating into a raw piece of liver. He makes the scene epic, a profound meditation on a most commonplace event. (Well, not the liver.) At one point, Roth inspects the shit, which is everywhere and on everything—from his father's discarded clothes to “the tips of the bristles of [Philip Roth's] toothbrush”—and thinks: “It's like writing a book.... I have no idea where to begin.”

In the middle of the cleanup, Roth's father makes him promise not to tell anyone what happened. Roth gives his word. Then, of course, he writes about it. Here's the proof: you're reading it. True, this is years later and his father has died by the time the book appears, but I'm not sure that makes the promise any less broken. Roth knows this better than anyone. He knows he's betrayed his relationship with his father, all for a scene about his relationship with his father. But then this is what writers do. We are not to be trusted. We twist words, distort intentions, reveal secrets. We use our own story, and when that runs out of steam we use those of the people closest to us.

So far, Cynthia has established no ground rules or boundaries for me to follow in writing about Jonah or our family. But I'm expecting them. I am waiting for the other shoe to drop. I've seen her wince when I talk about
My So-Called Memoir
at dinner parties or book launches. Fellow writers tend to ask what you're working on, and while I'm usually vague, lately I've started to wing it and go into a little more detail than I should, which is to say more detail than there actually is. “It's not just going to be about autism,” I explain. “It's going to be about parenthood and marriage, too. About hope and despair and storytelling.... About all the day-to-day shit you have to deal with.” Driving home, Cynthia will eventually ask: “Day-to-day shit? And about marriage, too? What about marriage?” I shrug. I can probably get away with that kind of non-response response now because once the book is finished, if it's ever finished, Cynthia expects to be heard from. I've promised to interview her and she's holding me to that promise.

“You can have a whole chapter to yourself,” I say. “Like Molly Bloom in
Ulysses
—only with punctuation. And you can say whatever you want as long as you say ‘yes yes I will yes' at the end.”

“Fine. But I think I'm also going to need veto power.”

“Sure,” I say, but neither one of us is convinced this is a promise I can keep. It may already be too late for that.

AT THE BEGINNING OF our conversation, Klar and I did speculate on why this subject of autism, of our children, was proving so difficult to write about. How, for instance, do you explain the feeling of having the ground constantly shifting beneath your feet? Or how you feel guilty every time you wish you could run away and how you, nevertheless, think about running away a lot? But where the hell, we both wondered, would we go?

There's a competition, seldom discussed, between parents of children with autism. Maybe that's because it's a disorder which remains largely mysterious, despite its growing prevalence. How you're treating your kid—what therapy you are using, even what book by what expert you're reading—becomes a kind of contest over who appears to be getting it right and who appears not to be. Is he taking vitamins? Supplements? Who's his doctor? His therapist? Will he have the flu vaccine? Did you read Jenny McCarthy? How could you read that crap? Have you purchased a hyperbaric chamber? Checked his urine? You've got to be kidding me. Do you accept him for who he is? Do you try to change him? As Chekhov, a writer as well as a doctor and himself a terminally ill patient, said: “When a lot of remedies are suggested for a disease that means it can't be cured.”

With autism, there's also no way of knowing who will have a happy ending and who will not, or, for that matter, what might be responsible for either. I'm guessing the author of a blog called “The Joy of Autism” might also point out that it's impossible to say what constitutes a happy ending. “There is no other normal but the normal we create for ourselves,” Klar writes in “The Perfect Child.” Joy is subjective, too, and elusive. You'd better be prepared to make it up as you go along.

When I talked to Susan Rzucidlo she told me that the only good piece of advice she got from any doctor about her son Ben was from one of the first psychologists to evaluate him. “She said, ‘Susan, we don't know which kids will make progress and which won't. So if any professional tells you they know what will make your child get to a certain level as an adult, that's when you should get up and walk out of the room. Because no one knows.' Those are the words I live by.”

Autism is a spectrum, I keep reminding myself; it stretches from despair to acceptance. But there are a lot of stops in between. It's also true that autism refuses to hold still—to be pinned down or neatly wrapped up. As a result, it can make adversaries of people who should be allies. I've seen it happen. When we first met Allison, for instance, she was implementing a complicated gluten-free diet for her son Matthew. Not only that, she insisted Cynthia try it with Jonah, too. He was so close to normal, Allison explained, it could make a huge difference for our son, an even bigger difference for him than it probably could for Matthew. Meanwhile, Cynthia urged Allison to take up ABA again (she'd tried it years earlier). Cynthia introduced her to The Consultant. She also invited Allison to one of our team meetings. Cynthia's feeling was that ABA might help Matthew talk since he was not verbal at the time. But the suggestions, on both sides, must have felt like accusations, like judgments, and the friendship was effectively over.

We all want the best for our children, and none of us can ever really be sure what that might be. This isn't only true for parents of children with special needs or autism, though it may be truer, more urgent anyway. For all the new information and research out there, all the books and articles and TV news stories, we know we're just guessing. In the meantime, we're also trying to get through one more difficult day, hoping, with no real reason, that tomorrow might be a little easier. This can make us desperate, jealous, clueless, petty creatures. It can make us behave inappropriately, unkindly, selfishly. Like Jonah's bad animals. Poor them! Like more bad, flawed animals. Poor us!

“How many days are there left of school tomorrow?” Jonah asks me at some point every Sunday. There is, in his syntax, a clue to how his mind works and how it can betray him. Although he is counting on the usual answer—and with March break over and no holidays coming up, it's a safe bet there will be five days, the last thing he wants to hear—he is also counting on being displeased with my answer. He is setting himself up for disappointment, giving himself a reason to fret. At the same time, he's also hoping for a recount. And who isn't? Who isn't counting on a freak snowstorm or an unexpected ped-day or a wildcat teacher's strike—one lousy little break? Jonah just wants to know if such a thing is possible—if that's too much to ask.

We're on the living room couch, watching the old, animated version of
Horton Hears a Who,
eating microwave popcorn, when Jonah's fretful question disrupts the good time I may have been too quick to presume we were having. I chose this video for its message. Dr. Seuss's books are like Shakespeare for kids; they encompass everything. I answer Jonah once and then ignore the question the next time, ABA style, the way I'm supposed to. I point instead to the screen and talk about what a great elephant Horton is. “He hears everything.” But I know my son. He's an expert at
not
changing the subject. If we were to compile a list of Jonah's FAQs, this one, about his upcoming school week, would rank high, right behind “where are we having supper?” and slightly ahead of “can I have a bad day?”

So his question comes again and again, and eventually I do what I'm not supposed to: I try to be a responsible father and give my eleven-year-old son a reasonable, thoughtful answer. “It's still Sunday,” I say. “What's the point of worrying about school now, Jonesy?” Then I quickly pass the popcorn to him, cross my fingers, and hold my breath.

Obviously, I'm the first to admit that I am on shaky ground here, that I am not the ideal person to be making the case for living in the moment, since to do that I'd actually have to believe such a thing is possible. I'm never quite sure how closely Jonah is observing me, but even if it's closer than I think, even if he can recognize the inherent hypocrisy in someone like me preaching the principle of mindfulness, I can only hope he'd be too kind to point it out.

Jonah's attention span for movies is limited. This I don't get. As a kid, I loved movies and watched them endlessly, at the expense of homework and a social life. I especially loved old Hollywood screwball comedies, anything by Billy Wilder or Preston Sturges. By now, I expected that Jonah and I would be spending our Sunday afternoons immersed in double bills:
Some Like It Hot
and
The Miracle of Morgan's Creek.
But Jonah doesn't like to be surprised, and surprises in movies, good movies especially, are hard to avoid. It's simpler than that, of course; it's just hard to get him to sit'still for very long, to focus on or follow the story. In the case of
Horton Hears a Who,
I need thirty minutes of his attention. But even before the light begins to dawn on big-hearted Horton that there is more to that dust speck he's discovered than meets his elephant's eye, Jonah is squirming on the couch. The only thing keeping him briefly in place and focused on the screen is the fact that I'm in charge of doling out the popcorn and I'm doing it stingily. Still, popcorn can't last forever. A few minutes later as Horton reaches the conclusion that people are all just people, regardless of their size or appearance or behaviour or, for that matter, how their brain might work, Jonah is slouching and sliding onto the floor. He's upside down, and facing the wrong way. He's humming and plotting his escape. But I don't let him. Instead, I demand his attention. The movie has an important message to impart for all of us, but for me and Jonah in particular. Horton is heroic, after all, and not so much in his actions, though there is that, but in his philosophy of inclusiveness, in his determination to act as a responsible, patient guardian. “He's a role model for us all, Jonah,” I say, turning my son right side up, which seems to shake today's predominant question loose again.

“Daddy, how many days are left of school?”

“Jonah, if you want more popcorn you're going to have to stop asking me that.”
Remember, sweetheart, no bribes, no blackmailing.

“Why?” he says.

“Do you want to know why? Huh? I'll tell you why. Because you're driving me crazy” But it's too late to protest. We're in the loop again, Jonah and me. He doesn't want to leave it and I don't know how to make him, or how to extricate myself. I lack Horton's talent to see beyond the nose on my face, to consider the big picture.

“I WAS HOPING the little guy would snap out of it.” That's what one audience member who attended an early preview
of Rain Man
wrote on his comment card. The movie, which came out in 1988, won four Oscars including the award for Best Picture and Best Actor. Hoffman's portrayal of a character matter-of-factly labelled an idiot savant was, in its time and for a long time after, the most significant representation of autism in the public consciousness, largely because it was the only one.

“In the real dark night of the soul,” F. Scott Fitzgerald writes in “The Crack-Up,” “it is always three o'clock in the morning.” And I'm guessing it was pretty close to three when I awoke last night and ended up back on the couch in the living room, channel hopping my way into an early scene between Cruise and Hoffman. Until last night, I'd deliberately avoided
Rain Man.
After Jonah's diagnosis it was a movie I vowed never to watch again. But there I was, up in the middle of the night, eating what was left of Jonah's popcorn and wondering why I never seemed to be able to stick to a plan, why I even bothered coming up with them.

“Two schmucks in a car,” is how Hoffman and co-star Tom Cruise joked about what might be an appropriate, albeit unusable tag line to the movie during the making of it. Both were convinced
Rain Man
was destined to fail. They were wrong about that and about there being two schmucks in the car. There's only one. It's clear from the first time we meet Hoffman, method acting like crazy as autistic Raymond Babbitt, that we're intended to find him endearing no matter how weirdly he behaves. “Cute and hilarious,” was what one reviewer said of his performance. Cruise is another matter. From the start, we are supposed to realize that he is at least as emotionally stunted as his brother, perhaps more so. Raymond has his share of head-banging tantrums, but it's Cruise who's always cracking up, who refers to his new-found brother as a “fruitcake” and an “idiot” without adding
savant,
who tells him: “You are killing me.” And: “Stop acting like a fucking retard.” Yet it's Cruise the audience is forced to relate to since we can't relate to Hoffman. He's too strange or too extraordinary, as the movie would eventually have us believe. As it turns out, it's Cruise who is going to have to “snap out of it” since Hoffman clearly won't or can't.

ON THE CAR RADIO the other day, the CBC announcer was reading a news story about a corrupt city official who had failed to act properly, at which point Jonah leaned forward from the backseat to interrupt. “Nicely,” he said, addressing the car radio directly. I started to laugh and, glancing in the rear-view mirror, I could see Jonah's face become stern. He was gritting his teeth and muttering, “Don't laugh.” I'm pretty sure he understood that the woman on the radio couldn't hear him, but he was acting on reflex and sending me a message at the same time. As far as the word
properly
was concerned, zero tolerance was now our unofficial policy, at least between Jonah and me. (Cynthia wasn't playing along.)
Properly
had become taboo, and Jonah was determined to stamp it out whenever and wherever he heard it.

Your vocabulary gets overhauled when you become the parent of a special-needs child.
Special,
for instance, no longer means what it once did; neither does
extraordinary
or
exceptional
or
challenged. Typical
is suddenly an unreliable word. And
normal
is fraught; you can forget about normal altogether.

At the gym recently, I ran into a friend who began to tell me about his visiting grandchild, a five-year-old boy, for whom he'd downloaded some games on his iPod. The child's grandmother objected. “But he loves it,” my friend bragged. “Every time he sees me, he begs me for more. It's not so educational, I guess, but it's a good sign, right? At least it means he's normal.” My friend clearly didn't realize what he was saying or to whom he was saying it. I understood immediately he hadn't meant anything by it, so I smiled weakly and went back to exercising. Every so often, though, he would glance at me from the stationary bicycle he was working out on. A few minutes later, he came up and apologized. “I said something terribly insensitive before and I feel awful....” I interrupted him, told him not to worry about it, that I hadn't even noticed, which we both knew, by then, wasn't true. But I felt worse for him than for myself. I realized he'd spent the last ten minutes beating himself up. Besides, I appreciated his apology. Not everyone would have realized what they had said or feel obliged to try, however futilely, to take it back. Nor should they. After all,
normal was
still a normal word to him.

But now, for me, all these words, labels, come out of my mouth tentatively, as if they should have invisible quotes attached to them, like the string on a yo-yo, so you can pull them back. With autism, there is the added issue of how to use the word itself. Do I refer to Jonah as autistic or do I make the effort each time to say he has autism? Do I say it that way until it becomes second nature to me? Have I figured it out yet? Is autism something he has or something he is?

Then there's the R-word to consider. Still routinely used as an insult in movies or by comics on cable TV, for example, it's also on its way to becoming taboo. Even if you have, like me, always subscribed to the theory that sticks and stones will, indeed, break your bones but words are not worth worrying about. The smallest kid in my class, growing up, I learned to live with being called
shrimpy pipsqueak, midget, twerp.
But
retard, retarded,
sting now whenever I hear them, no matter how they're intended. There was a time, of course, when the R-word was an improvement, when it was intended to replace more hurtful, less sensitive labels like
moron, idiot, imbecile.
Even Clara Claiborne Park, writing about her daughter in
The Siege
in the mid-sixties, matter-of-factly uses the word
defective
for her own child. Still, it was inevitable for
retarded
to become ugly the way words do—because of how they are invested with our worst prejudices and fears. Every time Jonah was evaluated and assessed we were given the assurance he was not mentally retarded, definitely not. He had a developmental delay, we were told. We were intended to cling to this statement of so-called fact, of objective, diagnostic observation, and so we did, gladly. We didn't think or, later on, allow ourselves to think about what the word
retardation
means, what you'd learn about it if you just looked it up in the dictionary, or if you just thought about it for a moment.

UNTIL
RAIN MAN,
Hollywood shied away from stories about disabilities, intellectual and otherwise, for obvious reasons. How do you come up with a happy or at least satisfying ending?
The Miracle Worker,
the 1962 Hollywood version of the Helen Keller story, was an exception. But then it has, despite the heroine's multiple disabilities, a built-in uplifting conclusion. By the end of the movie, Helen Keller, played overenthusiastically by child actress Patty Duke, still can't see or hear or talk, but she can communicate. In fact, the movie ends with her communicating like crazy. She has hope, and, more to the point, we have reason to hope for her. And we, the audience, end up feeling the only way we are permitted to—profoundly satisfied. The kid snaps out of it, after all.

A Child Is Waiting,
which came out a year after
The Miracle Worker,
is a braver and more compelling account of a similar story. With Stanley Kramer as the producer and Abby Mann the screenwriter (both worked on
Judgment at Nuremberg,
the venerable four-hour docudrama about the Holocaust), it had a lot going for it. Kramer also went outside the Hollywood box and chose John Cassavetes as his director. At the time, Cassavetes, a winning young actor, was also making a reputation as an avant-garde filmmaker. Together, Kramer, Mann, and Cassavetes hatched a big, ambitious plan to do something unprecedented—make a mainstream movie about mental retardation. There was certainly no imaginable upside to taking on this subject in the realistic, unsentimental manner they intended. That the movie was made at all, and by a big studio like MGM, with big-name movie stars Burt Lancaster and Judy Garland, was a testament to the good intentions of everyone involved. Cassavetes, in particular, was determined to push the envelope, to make sure the movie was as authentic and uncompromising as possible. This was just his third film and his first chance at a mainstream project with big-name leads. Even so, all the child actors he used, with the exception of the title character, were residents of a California institution for the mentally retarded. They weren't just extras in the story either; many had featured parts. “I realized truth is important,” Cassavetes explained years later. “I needed to know that if I made a film about a sensitive subject like mental retardation, the people I made the film about would know I had done it to the best of my ability, with no copping out.”

When the movie did come out, Brendan Gill, the film critic for
The New Yorker,
was dismissive of its casting choices. He summed up his experience watching
A Child Is Waiting
this way: “It is almost unbearable to be made to observe and admire the delicacy of the acting skill of Mr. Lancaster and Miss Garland as they move—the charming, the successful, the gifted ones—among the host of pitiful children. Despite the purity of their motives, as actors they have no business being there; simply as moviegoers, we have no business watching them.”