Bad Animals (19 page)

“I know that I was chosen for this,” she said.

“By this you mean ... well ...” I couldn't imagine what she meant. After all this time, I was still trying to figure out exactly what “this” was. I glanced over at Matthew, who was covering his ears and shrieking now that Jonah was done with his book and eyeing the VCR remote. Jonah, meanwhile, was oblivious. He was telling himself a knock-knock joke and laughing. Play date, indeed.

“This.
Making sure Matthew has the best life he can. Whatever that is or might turn out to be. That's what gives my life meaning,” she went on, shrugging, a little embarrassed perhaps by the way this confession had spilled out. Or perhaps she was uneasy with the way what she was saying sounded: too noble, too cheery, too much like a rationalization, to me and maybe to her too. So she changed the subject. “Cynthia tells me you're thinking about writing about Jonah. You should, you know. You owe it to him. You owe it to yourself.”

“There's a problem. I don't seem to know where to start.”

“Just start.”

EVEN AS I'M ON the phone with Emily Perl Kingsley, going on, more or less unsolicited, about
My So-Called Memoir,
remembering occasionally to ask her about that little essay she wrote some thirty years ago, I know what I should be telling her: how I reacted when we received our copy of “Welcome to Holland.” At some point during this interview with Kingsley, I'll have to come clean and tell her I freaked out.

But I also know why I'm hesitating. It's because even though I've never found Kingsley's essay inspiring, the same is not true for the woman herself. She is precisely that, in fact. She couldn't be nicer either. As an example: when I tell her about
Bad Animals,
the book Jonah wrote in school, she says she'd love to read it some time. Then she gives me her New York address and insists I send it. She tells me about the long Emmy Award-winning career she's had as a writer on
Sesame Street.
She joined the show in 1970, just a year after it first went on the air, and continues to work there. After her son Jason was born with Down syndrome in 1974, she was instrumental in advocating for children with disabilities to be featured on the program. Getting these kids, kids like hers, like mine, in the public eye has become her crusade much like Susan Rzucidlo has crusaded for a premise alert system. “There's been progress, but it's so slow,” Kingsley says. “People with disabilities are the country's largest minority—by far, far, far—more than African-Americans, three times Hispanics, six times Asians. And that's not counting people like you and me who are not disabled but who care about them. If you added those people in, it would be, well, almost everybody. Still, we can't get representation. It's appalling.”

Another reason I'm having a hard time getting around to my confession is that I'm trying not to choke up as Kingsley tells me the story of what happened when her son was born. “We were given the worst possible scenario. We were told he would never walk or talk or read or write. We were told we should send him away and tell people that he had died in childbirth. It was a nightmare.”

But Kingsley and her husband took Jason home anyway. “That's when we found he was really kind of bright and delightful and that he was learning like crazy and that everything we had been told was completely crazy. We made a promise to ourselves that nobody else should have to go through what we did.”

It was during a counselling session with a mother of a newborn baby with Down syndrome that the idea for “Welcome to Holland” occurred to her. “I was sitting at the bedside of this new mom and this little analogy just came out of my mouth,” she said. “When I got home I thought, you know, that wasn't so bad. I ought to write it down. I found myself repeating it to more and more people. it sort of took on a life of its own. It's been translated into dozens of languages and I probably still have three to five requests a week to reprint it. People carry it in their wallets, put it on their refrigerators. It really is the largest thing I have ever done. I'm just grateful it's helped so many people.”

“Have you gotten any negative responses?” I ask, and I realize I'm holding my breath. This is my opening. What about people like Susan Rzucidlo and her essay? Or Laura Krueger Crawford, whose version, “Holland Schmolland,” is also easy to find online and was written, Crawford told me, because “I'm just not one of those people who have to put a happy face on things ... who have to try to find the silver lining.” What about the people “Welcome to Holland” has driven crazy with its uplifting analogy? People like me.

“The people who have been angriest with me are the autism people. I guess because I haven't made it bad enough. Well, come on, give me a break,” Kingsley says.

“We can be a pain in the neck, I know.”

“First of all, I was writing about Down syndrome. It never occurred to me that every disability under the sun would come along and claim ‘Welcome to Holland' as their own. That's not my fault, you know.”

“No, it's not,” I say and then just blurt it out. I tell her I also had a problem with “Welcome to Holland” when I first read it. She doesn't respond. I didn't intend to ambush her like this, so I babble on about how I feel differently now, how what I've come to understand is that writing about this kind of thing is a way to deal with it. For some of us, it's the only way. So, yes, I understand why she wrote the essay. “But, to be honest, Holland,” I finally add, a little breathless. “Why Holland?” I'm prepared for the next thing I hear to be a dial tone. Instead, she barely reacts. “I've heard about ‘Holland Schmolland,' but not ‘Welcome to Beirut,'” she says matter-of-factly. I guess you get a tough skin writing for Muppets. Besides, she tells me, she recently came up with a whole new analogy for parents like us.

“Look, Jason, my son, has done wonderfully. Have you read his book? It's called
Count Us In: Growing Up with Down Syndrome.
It's a wonderful book, I recommend it. Jason is extraordinarily high-functioning, but people who feel I am bragging about my kid because he did so well, that's ridiculous. So here's my new story, okay? We're all in this boat, the same boat, and whether you're sitting in the front or the back, it doesn't make a bit of difference. We are all in
this
boat. If we all look down, we can see there are oars. If we all start rowing together we realize the boat is going to go farther than if we didn't. And we all get the companionship of rowing together, which is kind of fun. The wind is in our hair and we can sing a rowing song. But we are never going to catch up to that other boat. You know, the one that has twenty-four-hour margaritas and salsa dancing on the top deck. Forget it. You're not going to catch it. So if that's what's on your mind, get it out of your mind. Because we are on
this
boat and we are on it together. And just don't start measuring yourself against all the other people on this boat. You know why? Because this is
our
boat.”

Can you write your way out of disappointment? Out of a corner?

In her last novel,
Unless,
published in 2003, Carol Shields is uncharacteristically angry. It's an uncomfortable stance for Shields. Even in her gloomiest novel,
The Stone Diaries,
the anger of the protagonist, Daisy Goodwill, is repressed. That's the point of the story, one readers often miss. Shields often expressed surprise that the novel she set out to write—about disappointment and regret—was routinely praised for being about resilience and redemption. Still, she was that rare literary writer who did not shy away from happy endings. I asked about this when I interviewed her once. It was, I explained, the thing that distinguished her work for me. Contemporary literature, fiction certainly, doesn't lend itself to happy endings. They invariably feel contrived. Put another way, you can't go wrong with doom and gloom. Which is why it takes a confident writer to even attempt a happy ending. Well, maybe, Shields said. With
Larry's Party,
for instance, she still wasn't sure she'd made the right decision in having her hapless title character reunite with his first wife. But, she admitted, the happy ending habit turned out to be a hard one to break. She'd wanted Larry to have something good happen to him and she had the power to make it so, so she did, As a consequence, she'd taken some flak from reviewers, and now, after the fact, she wasn't sure they were wrong. She worried that she'd indulged in a kind of wishful thinking,
her
own particular brand of wishful literary thinking.

At first glance,
Unless
also appears to end too well. It concludes with the novel's narrator, Reta Winters, herself a writer of books which feature happy endings, reunited with her emotionally fragile daughter. The daughter returns home, after months of self-imposed homelessness, safe and reasonably sound. She's fragile but apparently on the right track. She intends to return to university to study science, perhaps linguistics. In the final pages, Reta is cautiously optimistic. She also manages to finish the novel she's been struggling with. “Everything is neatly wrapped up at the end, since tidy conclusions are a convention of comic fiction, as we all know,” Reta says. “I have bundled up each of the loose narrative threads, but what does such fastidiousness mean? It doesn't mean that all will be well for ever and ever, amen; it means that for five minutes a balance has been achieved at the margin of the novel's thin textual plan; make that five seconds; make that the millionth part of a nanosecond. The uncertainty principle; did anyone ever believe otherwise?”

Only this time, for Shields, the happy ending doesn't hold, not even for “the millionth part of a nanosecond.” I'm not buying it anyway. I'm also not blaming Shields. She wrote
Unless
in the last stages of terminal breast cancer, and the knowledge of that, for both her and the reader, casts a shadow over the narrative. More than that, it makes the novel feel disjointed at times, almost unmoored as Shields is caught between resignation and rage and uncertainty. It's a tough book to get through, finally, because it highlights the limitations and the untidiness of literature. It reminds us how resistant our lives can be to the imposition of meaning, to the credible prospect of a happy ending.

“THE JOY OF AUTISM'—and that's what she's going with?” Cynthia says.

“She's already gone with it. That's what she calls her weblog.”

“And how's that working out?”

“She said it got her into trouble when she first started the blog five or six years ago. Back then, the name was controversial.”

“I suppose so,” Cynthia says.

“There were nasty comments. People writing to say she was an idiot and worse. But not so much now.”

I'm recounting the highlights of a telephone interview I just completed with a woman named Estee Klar. She's a Toronto writer and art curator I learned about when I read her heartfelt essay “The Perfect Child.” It's about her son Adam, who's on the spectrum. Not long after Adam was diagnosed, Klar started TAAP or The Autism Acceptance Project. TAAP's mission is “to bring about a different and positive view about autism to the public in order to create tolerance and acceptance in the community.” She also started blogging about her life and about autism, which, she says on her website, is not an illness but a way of being. Even so, Klar is hardly starry-eyed. She knows first-hand how tough dealing with autism is. She also knows that if she were to accept all the gloom and doom heaped on her over the years she'd be incapable of doing anything, including what she believes is best for her son. Currently, Klar's blog reaches some two hundred and fifty thousand readers.

“Still”
Cynthia says, which is what I'm thinking, too—
still?

“I know, I know, joy and autism together; it's a stretch,” I say. “But, you know, it felt good talking to her. She was encouraging. She wished me good luck. She's writing a memoir, too. I know: Who isn't?” Cynthia doesn't say it, but I know what she's thinking:
You aren't.

My So-Called Memoir
is a long-running topic of discussion in our house. Cynthia has supported me from the beginning in my decision to write about our family and continues to be supportive, even though I'm starting to feel her enthusiasm waning lately as she begins to suspect that this project of mine is still very much a work in progress, assuming you use the word
progress
loosely.

At the best of times, which is to say just after Jonah was born, Cynthia and I were already like the protagonist and antagonist in Dr. Seuss's
Green Eggs and Ham.
The former, Sam-I-Am, insisting that the latter, the obstinate, nameless fellow with the big floppy hat, try something he's determined not to try. The story ends well enough, with Sam-I-Am winning out, with the message of open-mindedness and self-improvement delivered and received. But it's the big-hatted guy's steadfast obstinacy I relate to. Let's face it, Sam-I-Am is a monumental pain in the ass—the more so for having been right about those green eggs all along. The story, even for Dr. Seuss, strains credulity. Think about it: Do you know anyone who, after protesting so vehemently, would be so quick to change his mind—so comfortable with admitting he was not just wrong but wrong all along?

Communication isn't that simple. It is clear, for instance, that there are things Cynthia and I can't talk about. We know this sometimes even as we're talking about them, whether we're in Harriet's office or out on one of her recommended date nights, over dinner or in bed, early in the morning, before Jonah wakes up. We are both holding back too much. The subject—Jonah's future, both immediate and long-term, from what high school we will choose to how he will manage once we're gone, from puberty to financial planning—is fraught with everything we can't bring ourselves to agree on.

We can agree on this, though: “The Joy of Autism” is a curious name for a blog. I've trudged up the stairs from my office in the basement to tell Cynthia about this as well as something else I heard during the course of my interview with Klar.

“Okay, forget about the whole joy business,” I say. “That's not the main thing. Listen, I've got a new candidate. You know, for The List.”

Cynthia looks up from her computer at the mention of The List:
Our
List, to be precise. Over the last seven years, I've had my ideas about comedy confirmed. The worse things get, the easier it is to be funny. “Tragedy and comedy have a common root, whose name at last I think I know. Desperation,” as Peter De Vries said. And while Cynthia doesn't always see things this way, she still laughs at my jokes often enough to encourage me to repeat them. That is, incidentally, how a running gag is born.

“All right, tell me about The List. Who do we have now?” Cynthia asks.

“Mr. Joy-of-Autism.”

“Do I really want to know this? Should you be telling me this?”

“Probably not. Definitely not.”

“So?”

In a recent blog, Klar mentioned she was about to be divorced. She brought this up in our conversation as well. It was clearly fresh, and she filled out the story for me. She told me her husband, who came into their marriage, his second, with four children, was leaving her to go back to his first wife and presumably his first family.

“The guy's like Job in reverse,” I tell Cynthia. “Imagine Job bailing, throwing his hands up, saying, ‘That's it for me. My limit on suffering. I won't be doing any more. I'm done.'”

Once Klar told me about her personal circumstances and once it sunk in, my interview with her might as well have been done, too. I couldn't think of another question to ask; I could only think of jokes: awful, inappropriate ones.
Take my new life, please.
I forgot about why I had called in the first place. I forgot about
My So-Called Memoir.
I forgot about asking her if writing a daily blog helped her cope with the trials of raising a child with autism. I also didn't get around to asking if she was planning to turn her blog into a book like so many people were doing these days, or if it had attracted any interest from agents or publishers. The truth was I couldn't focus on anything but her husband's behaviour. Like a kid bringing home an unexpectedly good report card, I couldn't wait to run upstairs and tell Cynthia.

“Back to his first wife? Are you sure?”

“That's what she said. Have you ever heard of anything like that? Who does a thing like that?”

“Who?”

“An asshole, exactly,” we say together. There is, in both our voices, inexcusable glee. Where is our sympathy? Where is our empathy? It makes me think theory of mind is just that—a theory. It's a jungle out there, after all. Empathy is no one's top priority.

“So where does that situate you on The Asshole List?” Cynthia asks, getting up to hug me.

“I'd rather not boast.”

“You've earned it, sweetheart.” The hug is followed by an unexpectedly passionate kiss. Here we are making out, and in the middle of the day. Marriage, whatever else you say about it, has its astonishments.

The List, I should explain, is an inside joke, the kind couples share that should probably remain between them. But it's also an important source of self-vindication. It consists of the names and narratives of fathers and husbands behaving worse, frequently much worse, than me. This is, as Michael Chabon points out in his essay collection
Manhood for Amateurs,
the handy thing about being a father these days: “The historic standard is so pitifully low.”

Fictional fathers count—from King Lear to Homer Simpson. So do celebrity fathers: from Joe Jackson, Michael's dad, to Leo Tolstoy. On that front, the horror stories are endless. Minor celebrities count, too. Like Richard Heene. Most people have probably forgotten Heene by now, but not me. He's my lodestar. If you don't remember the story, he was briefly famous for claiming that his six-year-old son had disappeared in a hot-air balloon the Heene family happened to keep tethered in their backyard. The story was a hoax, dreamed up to land Heene his own reality TV series. The trouble was he hadn't properly briefed his son on the secret nature of the plan. The kid, the Balloon Boy as the media immediately dubbed him, eventually spilled the beans in an interview on CNN. Heene went to jail for a short time and hasn't been heard from since.

There are also people Cynthia and I know on The List. Like a fellow I play pick-up basketball with who admitted to me at a bar after our weekly game that he'd recently done the worst thing a man can do. “I left my pregnant wife for another woman,” he said with what seemed to me an admirable mix of self-contempt and bravado.
Admirable, sweetheart?
There's also Allison's husband and, now, Mr. Joy-of-Autism.

As I said, The List is the kind of thing that should remain private. I genuinely liked talking to Estee Klar. She is, in her outlook and love for her child, unquestionably brave. In her blog, she keeps calling for more upbeat stories—“positive autism,” as she puts it—and I'm guessing that if she ever reads this, she'll be disappointed in me and my knee-jerk negativity. She'd be well within her rights, as a matter of fact, to put me at the top of
her
List.

Mothers of children with special needs, like Klar and Susan Rzucidlo and Emily Perl Kingsley, like Harriet, like Cynthia—have more to handle than they deserve. And what always astonishes me is how they do handle it. They don't run out; they don't give up. They do the best they can for their families. To her credit, Klar has found or maybe created a kind of acceptance—heroic or self-deluding, who knows? who cares?—I can't even imagine. In her essay “The Perfect Child,” she writes about how she has changed her attitude: “We are far from the days when we viewed autism as an illness to be cured—Adam is perfect. This is what autism has taught me. It is the world that isn't.” There's a mother's love and strength for you: to blame the world for your problems and mean it is an enviable accomplishment, especially since the world couldn't care less.

Attitude aside, Klar and I have a lot in common. To date, we have both spent years trying to write a book we can't quite figure out how to write. We are both hoping to find an agent or editor or publisher who will somehow see the intrinsic value in turning our complicated lives into literature. We have similar concerns when it comes to narrative structure—for instance, how do you tell a story when you have no idea how it's going to turn out? Neither of us can even guess what is going to happen to our sons. What progress they will make. What setbacks they will have to overcome. That includes, for Klar, worrying about things I confess I haven't considered. Like the ethics of writing a book about her son, about how telling his story, perhaps getting it published, might adversely affect him at some point down the road. How it is, ultimately, an invasion of his privacy—an invasion he is not now in a position to object to. I have different worries—like how writing about Jonah might make
me
look down the road. How bad I mean. Of course, one editor I did tell about the book advised me to embrace my selfishness, my narcissism.