Bad Animals (25 page)

THIS EVENING WHEN Cynthia finally calls from the country I let her message go to voice mail. I'm anxious to know what she thinks of the manuscript, just not right now. Her notes can wait. It's been a long day; though, to be honest, not any longer than usual. I'm overprotected too. My sisters took Jonah swimming in the afternoon. Then his grandparents took him out to dinner. All of this had been arranged by Cynthia before she left. Right now, Jonah is taking a bath—with the assistance of a laminated list of instructions. This is just one of a number of achievements made this summer while I was away. When I returned from Banff, Jonah was selecting his own clothes in the morning and he was getting his own breakfast—juice, toast, and/ or cereal. Cynthia assured me he can bathe on his own, too, but I check in on him periodically to be sure. He's happily reading aloud to himself from his laminated list. “Put shampoo in your hair. Scrub really hard 50 times.”

Just before bed, we will finally get around to
More Bad Animals.
In my experience, this isn't the best time to write, but it is the best time to contemplate writing. It's the ideal time to trick yourself into thinking that tomorrow everything will fall into place. It doesn't, of course, but still, the night before, the possibilities seem limitless.

“So how about this, Rooney the Camel drops the biggest ever bottle of syrup on the floor and he gets stuck. When his old friends Deedee the Cow and Moe the Yak try to help him, they get stuck too. They all start shouting and saying lots of bad words. Should we write that down?” I'm drying Jonah's hair with a towel, so I can't see his face. “And then the new characters, remember, the Worst-Monkey-Ever and his father, the Worst-Daddy-Ever argue about what to do next. What do you think should happen next? Go ahead, take a guess. It could be anything, Jonah, there are no wrong answers, okay? It's a story, that's all. See if you can think of something. Use your imagination.” When I lift the towel I can see Jonah is frowning; it's a frown I don't think I've ever seen before. How is that possible? He's not angry as much as deeply concerned.
Is he supposed to dry his hair himself? Does he miss his mother? What am I missing?

“He's not the worst,” he whispers.

“What's that Jonesy? What's the matter?”

“It's not true. He's not the worst monkey ever, and not the worst Daddy ever.”

“It's just a joke. I thought you'd like those names.”

“I don't like them.”

“Fair enough. What should we call them? You tell me.”

“We should call the monkey Jumpy the Monkey.”

“That's a good name for a primate, definitely, I like it. What about his father? What should we call his father?”

“Grumpy the Daddy.”

“Yes, and the two of them get into bad trouble. It's just not the worst trouble ever. There are worse things. There are always worse things, I get it. Realism, Jonah,
yes,
that could work. And they say bad words,
like poop.”

“Like
properly.
”

“And they do bad things, like pick their noses.” As I talk, I notice Jonah is leaning forward, waiting for me to continue, waiting to hear what comes next and also to add his contribution, and that's when it occurs to me. We are having a simple, ordinary conversation. Okay, maybe not ordinary, but close enough. We also have a story to tell.

“And they eat their boogers,” Jonah says.

“Yes, they're definitely booger-eaters. That's perfect. They are irredeemable. Bad guys. Bad characters. I know, just not the worst. Do you know what irredeemable means? It means there's nothing you can say or do that is going to change them. They are who they are.”

“Bad animals,” he says. “And in the end, they all ...”

“All right, tell me, what happens in the end?”

“They all go out to a restaurant for hot dogs and French fries with ketchup.”

“And ice cream for dessert.”

“Chocolate ... in a cone.”

“I like it. Yes, I can live with that. I'm telling you, Jonesy, this thing practically writes itself.”

“Just tell me if you're planning to trick me into saying all sorts of embarrassing, incriminating things.”

“About whom?”

“I don't know, all of us. Am I going to have to get up and walk out?” Cynthia asks, glancing at the tape recorder in front of her.

“Like in those old
60 Minutes
interviews, you mean? They don't even do that any more. Besides, where would you go? You live here.”

“And what's this for?” she asks, indicating the box of Kleenex next to the tape recorder.

“You never know.”

Cynthia and I are sitting side by side at our new dining room table. It was an expensive purchase, a luxury we couldn't afford, but we bought it anyway. You can't put a price on symbolism. This summer we turned Jonah's therapy room back into what it was originally intended to be, a dining room, a place where Jonah can still do his homework and have the occasional therapy session—he'll mostly have a tutor when he starts grade six—and where the three of us can eat together as a family. In
The Blood of the Lamb,
Peter De Vries's autobiographical hero, Don Wanderhope, is obviously not surprised at how overjoyed he is to learn his leukemia-stricken daughter has gone into a brief remission. What surprises him is the reason he's so happy. He hadn't been counting on a miracle, it turns out, only a chance to have things the way they once were. That's miracle enough. Or as Wanderhope says: “The greatest experience open to man then is the recovery of the commonplace.” Put another way, we're thrilled about our new dining room table.

Actually, it's only Cynthia and me tonight. Jonah is having a sleepover at my sister's. We're luckier than a lot of people we know who have a child on the spectrum; we have a support system that's dependable and generous with its time. My sisters and Jonah's grandparents are always available to take care of him for a few hours or longer, if necessary. Somehow, they've managed to forgive us for the decision we made early in Jonah's ABA therapy to prohibit them from staying with him unless either Cynthia or I were present as well. We didn't come right out and say that we didn't trust them, but we might as well have.

We didn't think they would be able to impose the proper structure or follow the ABA rules we were then convinced Jonah so desperately required. We were certain any kind of let-up would be disastrous. It was as if our regular meetings with The Consultant had infiltrated the rest of our lives; everyone was looking over everyone's shoulder. We were, in effect, babysitting the babysitters. We had created our own little fascist regime: demoralizing and ultimately unsustainable.
You're exaggerating, sweetheart.
Now, on sleepover nights at my sister's or Friday dinners at his grandparents', pretty much anything goes. Jonah eats whatever he wants, watches whatever videos he wants, stays up as late as he wants. No doubt, he stims to his heart's content. He's like a frat boy on spring break. When he's returned to us the report from all his regular babysitters is invariably the same: he was an angel.

“Should we start with my notes?” Cynthia says, as we clear the dishes from the table. We've had most of the afternoon to deal with those notes, but we decided it might be nice to cook dinner together first, have some wine, make the evening into a kind of working date night. An oxymoron, I suppose, but Harriet would half-approve anyway. Now, however, it's down to business. I warn Cynthia this could last all night and tell her about those “rap sessions” the Kaufmans so enthusiastically endured in
Son-Rise.

“They explored their innermost feelings, asked and answered the most intimate questions. They gazed into each other's souls. It brought them closer together, apparently.”

“Yeah, right!” she says, unprompted. I'm beginning to think wine with dinner might not have been a good idea.

“All right, what do I get wrong?”

“You mean in the book? Well, me, for starters. You make me sound too good. All that stuff about how I sprung into action after the diagnosis. That's not how I remember it. I remember running to the pharmacy to buy those nutritional supplements, those milkshake things in a can. I couldn't eat. I never
can't
eat. I was a mess. I was depressed. You didn't know?”

Cynthia has my manuscript in front of her. It's decorated with pink and blue Post-it notes, providing easy access, I'm guessing, to mistakes and trouble spots. I gasp at the array of colour.

“This includes the parts I liked,” she adds quickly, recognizing my need for reassurance. “See all the smiley faces. And those little pencil lines, like rain falling, those are tears.”

“All right, let me see.”

“Later. First things first: here's what I think you should add.”

“Add?”

“You said this was my chapter.”

“I did?”

“My Molly Bloom chapter, remember.”

“James Joyce's wife didn't actually write that chapter, Joyce did.”

“But I bet she had notes. So, here, read this.” Cynthia hands me a loose sheet of lined paper, which has as its heading: “Ideas from a Parent for Educators Who Need to Inform Parents about Children Who Have Developmental Delays.”

My first thought is:
I'll have to change that title—maybe something like Let's Talk About Autism.
Underneath the heading, there's a numbered list of suggestions, a well-considered primer on breaking bad news gently, including: “Please do not gang up on and outnumber parents. That is cruel.” Or: “Do not be defensive if they have negative comments about your school or daycare. Understand parents need an explanation for the problems with their child. It can take time for parents to come to terms with what might seem obvious to you.”

Cynthia is watching me read, and it's taking a while—I get stuck on that phrase “come to terms”—but the moment I look up, she's talking. “I thought this could be useful, you know, for anyone who has to tell a parent about their child having autism. I still wish the daycare people had told us when they first suspected something. I guess they tried. But they didn't know how. Sometimes I think it could have made a difference, a big difference, if we'd known, you know, earlier, if...”

“I'd rather not think about that,” I say and pour myself what's left of the wine. I can't remember if we have another bottle somewhere. Is it too late to go shopping? Neither of us drinks much, though there have been many times in the last seven years when I've wondered why not. Now is one of those times. The idea that there was something that could have been done—something simple—is hard to bear sober.

“I think about it sometimes. About if we'd known a year earlier. And what that might have meant. That's why you should include this—this appendix, you could call it. You see, it doesn't necessarily have to be in the book.”

“This isn't really the kind of book that has an appendix.”

“Or is useful to anyone?”

“Right. Not that either.”

SEQUELS HAVE A momentum of their own. That's not to say Jonah and I have finished
More Bad Animals
or even that we ever will, but in the last month, out walking or in the car, we come back to it every so often. It's taking on the feel of a long-term, ongoing project, one of those things you contemplate for years until it finally starts to make sense and fall into place or until you realize it's going nowhere. In any case,
More Bad Animals
has given us the opportunity to discuss the lives of characters like Deedee the Cow, Moe the Yak, Rooney the Camel, not to mention the monkeys, Jumpy and Grumpy, and how they are required to have an arc. That means they start in one place, I explain to Jonah, and end somewhere else, usually better. Not like people, in real life, who just have their ups and downs and keep on having them.

“Like on a rollercoaster,” Jonah volunteers.

“Kind of. But a small rollercoaster, not a fast or scary one.”

“Not scary?” He frowns.

“All right, kind of scary, now that you mention it.”

Clara Claiborne Park never stopped writing about her daughter Elly, though by the time she got around to adding an epilogue to
The Siege,
fifteen years later, she was using her daughter's real name, Jessy. By then, her concern that Elly might be embarrassed someday by what her mother wrote was no longer an issue. Even at twenty-one, Jessy was immune to embarrassment. She also liked flipping through the pages of
The Siege
and coming across her “book name.” By then, Park also realized her daughter was never going to read about herself in a way that might cause her undue hurt. Some twenty years after the epilogue, in 2001, Park wrote a sequel,
Exiting Nirvana: A Daughter's Life with Autism.
Perhaps what is most reassuring about meeting up with Park and Jessy again in
Exiting Nirvana
is the way Park begins the new story. “In bewilderment,” she writes, “I think—that's the truest way. That's where we began all those years ago. That's where everyone begins who has to do with autistic children.”

Jessy is in her forties in the sequel, living with her parents, and doing well, all things considered. She has improved markedly in certain areas, less so in others. Speech is still a problem, as is social interaction. She is not entirely independent, but she holds down a job in the mailroom at Williams College in Massachusetts where her mother taught English before she retired. Jessy is also a professional artist. She's sold paintings and earned commissions. A few examples of her art are included in the book and are striking for a couple of reasons—the meticulous, geometric rendering of buildings and bridges and the absence of people. “Jessy's life, and life with Jessy, is not all strangeness,” Park writes, though she feels compelled to add a little later that there should be no confusion—this is not the story of “a miraculous recovery.” Even so,
Exiting Nirvana
serves the purpose every sequel should. It provides its real-life characters as well as its audience with a second opinion, a revised assessment. If you liked how things worked out the first time around, well, here's more of the same. If you weren't satisfied, here's a second chance, a do-over. There is bewilderment here, true enough, but hope, too, in the fact that Jessy goes on learning, and so does Park; that life, even with autism, as Park seems a little amazed to discover, is “less strange every year.” Stories continue. Try to stop them.

Of course, if it's something a little more extraordinary you're looking for, there's Barry Neil Kaufman's sequel to
Son-Rise,
which was published in 1994 and unabashedly titled
Son-Rise: The Miracle Continues.
Nothing bewildering here: the foreword is written by Kaufman's son Raun, who is, sixteen years after the first book about him appeared, grateful to his parents for their open-minded attitude. At least as important as being cured, he says, is the fact that his family always accepted him for who he was. He takes some shots at the “experts” in the field of autism and has a good word to say for “false hope.” The kind you put in quotation marks—“How in the world can anyone put these two words together?” he writes—the kind Raun is plainly the product of. We also learn, in the foreword, that this young man whom the doctors once called “a tragedy” is in college, on the debating team, reads Stephen King, has a girlfriend, and is politically aware and active. The foreword is, in many ways, a thrilling document. Raun's voice, on the page, is quirky, a little stiff, a little too propped up by self-esteem; nevertheless, this is the voice of a recovered child. Raun is also a poster boy. The aspects of the original memoir which were vaguely irritating, like its author's self-congratulatory style, are less subtle in the sequel. The senior Kaufman appeared to have an agenda or the beginning of one in
Son-Rise,
though it was hard to pinpoint. In
Son-Rise: The Miracle Continues,
it's impossible to miss. The further you read in the sequel the more you realize this is a book-length infomercial for what has turned into a bustling cottage industry. The Kaufmans' trademarked Option Institute offers, according to the dust jacket, “programs for families with special children as well as for adults who come to learn the Kaufmans' self-accepting and empowering process.” Today, the Option Institute's website offers seminars and workshops on everything from autism awareness to self-empowerment. You can also order one of Kaufman's twelve bestselling books including
Happiness Is a Choice
and
To Love Is to Be Happy With.
The miracle, indeed, continues.

I googled Clara Claiborne Park recently, hoping that I might be able to get in touch with her, that she might have her own website or an email address where I could contact her. It's so easy to find people today you take it for granted that you can find everyone. I'm not sure what I wanted to say, maybe ask for an update, find out if one more sequel was on the way. In the epilogue to
The Siege,
Park recounts how she never intended to write a book about her then six-year-old daughter. She wanted, instead, to wait and see how the story ended. “Though memory tricks us often enough,” she adds, “that memory must be true; I could not possibly have invented words so touchingly, so piercingly naive. I imagined, then, that the story could have an ending.”

What I learned from my internet search was that Park had died a month earlier at the age of eighty-six. Her obituary in the
New York Times
credits her with being a pioneer in raising awareness about autism, in making children with the disorder a little more understood and their parents a little less isolated. It goes some way towards describing a woman with quiet dignity and unrelenting determination. It also provides that update, that sequel, on Park's lifelong subject: “At Williams College, where (Jessy) has been employed since high school, a sign on the door of her workplace says, Jessica H. Park Mailroom.” It was good to know. It was also a reminder of what Park once said about true-life stories, how they do not end, how we only stop telling them.