Bad Animals (18 page)

This is not unusual. I'm guessing every parent of a child with autism remembers the top five or, for that matter, top fifty unintentionally dumb or hurtful things said to them. In
Let Me Hear Your Voice,
Catherine Maurice recalls the doctor who joked about how the lack of factual evidence about autism had provided a wealth of business for psychologists and psychiatrists. In
The Siege,
Clara Claiborne Park remembers a pediatrician who tried to reassure her by saying of her daughter, “I don't think you got a lemon.”

In our case, there was a neighbour with a son Jonah's age who wondered out loud if maybe we'd spent too much time when Jonah was younger encouraging our son's more offbeat gifts. Cynthia had sought out this neighbour to confide in her because the neighbour had done some volunteer work years earlier at a school for children with developmental delays. This made her, at the time, the closest thing we could find to an expert. An appointment at a clinic was weeks off for Jonah, maybe months. We also hadn't told anyone anything yet. We thought we were alone. We didn't know then how many other people, parents of children with autism, there would be to consult with, in person, online, in books. In the meantime, our neighbour listened to Cynthia's concerns patiently, sympathetically. Then she said: “It could be you pushed him too hard.” She went on to repeat a theory she'd heard discussed at the school where she volunteered. It was about parents who sometimes unwittingly encourage counter-productive traits, stims—it was the first time I heard that word—in their children, children who might be predisposed to this type of issue. She'd seen it, she said, at this place where she volunteered. Well, she'd heard about it anyway from some of the staff there—child care workers and psychologists.

This was all nonsense, of course, and tactless. But later when Cynthia, in tears, repeated it to me, I couldn't keep from wondering if our neighbour might have a point. After that, I couldn't help reviewing what
I
might have done to make this happen. For instance, should I have taught Jonah the St. Crispin's Day speech from
Henry V
when he wasn't much more than two? I remember I taped the Kenneth Branagh movie version and played it repeatedly for him. He loved learning it, or so I thought. (I certainly loved teaching it to him.) In any case, I could probably find Jonah reciting the lines on one of those tapes my sister transferred to DVD, the DVDs she reluctantly gave me on Jonah's eleventh birthday, with a note that said, “You should look at this, really!?!” Then I could watch him exclaiming:

This story shall the good man teach his son;
And Crispin Crispian shall ne'er go by,
From this day to the ending of the world,
But we in it shall be remembered;
We few, we happy few, we band of brothers ...

Jonah had and still has an extraordinary head for arcane facts. When he was two and a half he memorized a deck of playing cards, featuring the names of fifty-two breeds of horses. Words like Lipizzanner and Clydesdale rolled off his tongue as Cynthia held up a card and quizzed him. He never seemed to grow tired of the game. I can see now how this all must have seemed to other people, like party tricks—
Henry V,
for heavens sake—or hubris. At the same time, who didn't find it endearing? Who didn't get a tremendous kick out of Jonahs precociousness and our preposterous pride? I couldn't leave a family get-together or a visit to a neighbour's without Jonah showing off, without me coaxing him to do one of our routines. Our fist bumps, our running gags, all our shtick.

Me: See you later ...
Jonah: Alligator.
Me: In a while ...
Jonah: Crocodile.
Me: Stay loose ...
Jonah: Mongoose.
Me: Don't be late ...
Jonah: You primate.
Me: Tamarra ...
Jonah: Cabybara.

We could have gone on; often we did. We boasted about Jonah's love of books, a genetic predisposition, no doubt, and his obsession with the alphabet. He knew it backwards and forwards almost before he could walk. But now here was our neighbour, with perfect hindsight, pointing out to Cynthia what we were too crazy in love with Jonah to see, that there was something wrong. “You know what she's really saying,” Cynthia said. “She's saying we did this to him.”

WHAT WENT WRONG?
It's a question you're forever asking when you have a child with autism. Perhaps, as a consequence, other people are drawn to the question, too, even if they aren't tactless enough to come right out and ask it. In the last few years, we've received emails and phone calls with a heads-up about everything from the dangers of vaccinations to the merits of green tea. Television and video games and computers, anything with a screen, have recently taken a share of the blame. Some studies link an infant's exposure to flashing images with an increased inability to process information. A Facebook friend recommended a blog that suggested giving marijuana to your child with autism. Another acquaintance Cynthia occasionally runs into never fails to request a sample of Jonah's pee. The urine is supposedly some kind of crystal ball, an indicator of procedures to avoid and those to pursue. There are also studies showing a higher incidence of autism in the children of older parents, forty and up, or of parents with graduate degrees. Did we know that?
I did,
I felt like saying,
and if I could give back my useless M.A. now I would.
Why didn't someone tell me this at the time: that there was a price to pay for being an unemployable book nerd? I would have gladly skipped my graduate courses on Old English and library science. I could have lived without Chaucer and the correct way to format a bibliography. Some studies suggest that parents who may have exhibited mild autistic traits of their own when they were younger are more likely to have a child on the spectrum.
Is that us?
We've been informed, by friends and acquaintances both, about the latest link between old sperm and autism. That would be
my
old sperm they're talking about. There's the missing gene theory and the testosterone theory, which suggests that boys with autism tend to be extreme boys. They have too much of the male hormone, and too much of it is distributed in the wrong places in the brain. I thought that just led to more offensive linemen, but what do I know? So, yes, we're used to all of this theorizing and guesswork by now; we've learned to take it in stride. We even learned something from our neighbour and our first experience with generalized, uninformed, and unsolicited blame; we learned that what went wrong is beside the point. No good can come of asking the question. Not now and not for us.

IN
THE EMPTY FORTRESS,
Bruno Bettelheim draws an analogy between his experience in Nazi concentration camps and the experience of children with autism. He explains that for these damaged children a cold, uncaring mother was the equivalent of an S.S. prison guard. In his personal writing, Bettelheim demonstrated the memoir's dark potential. You could write about your terrible experience and make it worse. You could turn lemons into poison.

Bettelheim's theories were largely discredited by the mid-1970s, though the after-effects linger. The notion that parents must somehow be doing something wrong has remained a convenient way of explaining an inconveniently mysterious disorder. So while it's true that parents no longer have to take the rap for making their children autistic as they once did, they are often blamed or feel blamed for not knowing the best way to make their children better. Maybe they haven't read the right book, or sought out an effective treatment. Or maybe they have, and failed to carry it out rigorously, consistently enough. You should have been more vigilant. You should be collecting the kid's pee and testing it. Or maybe you should have sewn a red ribbon into every stitch of underwear you owned the day your son was born and never ever removed it.

“My son Ben's original diagnosis was ‘severely impaired with infantile autism.' He carries a secondary diagnosis of profound mental retardation. But he's a lot more than his diagnosis. He's eighteen now and has made far more progress than anyone ever suggested. He currently functions at what's called a moderate level,” Susan F. Rzucidlo says. “I would rather this not be what my son lived with because my fear is what happens when I'm not here to care for him. Still, so much good has come from the people I've met and the friends I've made and the people who stand beside you and the work I've done, I can tell you that has been a blessing.”

Rzucidlo is on the phone from her home in suburban Delaware. I found her on Facebook, but I learned about her before that because of an essay she wrote called “Welcome to Beirut.” It is, in the world of parents of children with autism, a subversive tract, cherished mainly for its honest, angry prose. For Rzucidlo, though, it was a one-off. She doesn't consider herself a writer. Instead, her way of dealing with her son's situation has been to become a community activist. Rzucidlo has been working at instituting what she calls a “premise alert system,” first in her hometown for her son, then elsewhere for others like him. Her idea is simple, so simple you wonder why no one ever thought of it before. Rzucidlo's goal is to educate first responders, such as police or paramedics or firefighters, about special-needs individuals in the community. If there is a call involving Ben, for example, the first responder will ideally arrive at Rzucidlo's house knowing that he's dealing with an individual with autism and knowing that that individual's language and communication skills may be limited and that he may not answer when called. The system caught on in her community, and Rzucidlo has pushed, with some success, to have it adopted throughout the state and some day, she hopes, even wider. This is, she tells me, one of the positive things to come out of her son's condition.

“Of course, in the end, I'd still knock over my grandmother or anyone else's to get to a cure if there were one,” Rzucidlo says. We've been on the phone for about an hour, though I know that what I'll find out when I sit down to transcribe the interview is that I've talked much more than she has. I've gone on endlessly about the book I'm trying to write for starters, about how my wife hasn't read it yet and how I worry about what she's going to think. I talk about Jonah, too, and it becomes clear from her response that she thinks I'm lucky, that Jonah is more high-functioning than her son. I'm tempted to try to make up for this randomness—Whose kid is doing better?—by pointing out how much more high-functioning she is than me. But I don't know how to say that and make it come out right either. So, finally, I shut up.

“I don't know that I'll ever accept this,” she goes on. “It's a chronic pain and it comes like the wind. Sometimes you go along and you really barely feel it and other times, it knocks you to the ground. Milestones especially do that—like when Ben turned sixteen and I thought he should be driving now and, you know, he will never drive. For the most part, though, you walk around with the wind ever-present but also not all that noticeable. You get used to it: the abnormality of it.” She has, she added, mellowed since she compared the experience of finding out her son has autism to that of being kidnapped by terrorists:

One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach.... You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. Your child has autism.

Rzucidlo wrote “Welcome to Beirut” as a response to “Welcome to Holland,” Emily Perl Kingsley's inspirational essay, which is ubiquitous in the special-needs community. It's available online, and for years it was regularly reprinted in the “Dear Abby” newspaper column, anthologized in books like
Chicken Soup for the Mothers Soul,
and set to music as a choral piece. Like us, Rzucidlo received her first copy soon after her son was diagnosed. “As a matter of fact, in that first week I remember seven different people giving me a copy of ‘Welcome to Holland.' I almost lost my mind,” Rzucidlo says. “So I just sat down and wrote my version in one sitting. It just poured out of me. I'd love to go back and edit it, but I also think I should just leave it rough because this
is
rough. This is a hard path.”

In the beginning, Rzucidlo's path consisted of dealing with a clueless bureaucracy. This was in the early 1990s, and she was routinely denied services. “The woman in our community who was in charge of Ben's case when he was first diagnosed was dead-set against any child having autism. She wasn't going to permit it in her county.”

At the same time, she was dealing with psychologists who were recommending she put her son in an institution, who told her he would never be able to eat with a spoon, never tie his shoes, never talk, and never know she was his mother. When she refused to listen and walked out of one psychologist's office, the psychologist sent Rzucidlo an unsolicited report—about her. “it said that I was in deep denial about the severity of my son's disability and that I needed therapy. Well, you know, I may very well need therapy, but it's not because of that.”

You are dropped into the middle of a war zone, Rzucidlo writes in “Welcome to Beirut”: “You don't know the language and you don't know what's going on. Bombs are dropping—'Lifelong diagnosis' and ‘Neurologically impaired.' Bullets whiz by—'refrigerator mothers,' ‘a good smack is all he needs to straighten up.' Your adrenaline races as the clock ticks away your child's chances for ‘recovery' You sure as heck didn't sign up for this and want out now! God has overestimated your abilities.”

DURING THE WEEK-LONG March break, Jonah's therapy continues at home. Jessica comes for a couple of hours, but that still leaves a lot of free time, so Cynthia has been taking Jonah to the park every day. This is Montreal, and there is still a lot of snow and slush on the ground. It has also been unseasonably cold, but the two of them dress in layers, take snacks and blankets, and are gone for hours. Things are easier for all of us when Jonah has some physical exercise, and Cynthia says they just need to get out of the house for a while. This is hard to argue with; I am not good company. Even when I'm holed up in the basement, my general gloom somehow seeps upwards.
My So-Called Memoir
is now, in lieu of anything better to call it, the unofficial title of the book I am writing, and it's not going well. I've sent proposal letters to a few literary agents in Toronto, and so far only one has gotten back to me requesting an outline.
Outline? If I could come up with an outline I wouldn't need a book.
I find myself giving up on the manuscript daily. There's too much to say and nowhere to start. So I try to break the process down. I know what I have to do—just write a sample chapter, one chapter I'm happy with, and that will be enough. But it's not. I find myself giving up on the sample chapter daily.

The same goes for
More Bad Animals.
The characters are not exactly coming to life. The problem is: they're less sympathetic in the sequel. The delight Jonah took in their misbehaviour is missing. While we've had some time to work on it during this break, even when I can coax him into sitting with me for a few minutes, it feels too much like homework and he bolts. So I've taken the liberty of turning his characters into whiners and complainers, passive-aggressive, self-pitying, insufficiently evolved cows, yaks, and camels. The two monkeys I've introduced to the story, son and father, are even worse. They have forsaken swinging through trees and eating bananas for sniping. Which is another problem: there's not enough action in the story. Maybe all the bad animals should go on a road trip or something—head out for the moon or Mongolia. Cynthia was right: sequels don't work.

“So what are you two doing in the park?” I ask Cynthia when she returns late one afternoon.

“I can't tell. It's a surprise.”

“Come on. I'm terribly bored with myself.”

“You?”

“Surprise me.”

“All right, I wanted you to see it in person. I was going to drag you to the park tomorrow, but here.” She sits me down on the couch and hands me her phone. Then she calls Jonah and calls him again. He comes running in and slides to a kind of abrupt, tilting Charlie Chaplin stop. He gives us each a look, somewhere between desperation and frustration. It's unfamiliar and worrisome.
What now?
He just wants to get back to the YouTube video he's watching—Katy Perry singing “Hot n Cold”—and is frustrated because we're bothering him. I realize now why I didn't recognize the look—it's his pre-teenage scowl. He hasn't perfected it yet, but it's reassuring to know that he's working on it. If there was a book called
What to Expect from Your Eleven-Year-Old,
I'm sure this look, what it means, what it portends, how to deal with it, would all be covered in an early chapter.

“We're going to show Daddy what you've been doing in the park,” Cynthia says, “and then you can go back to Katy Perry.” We all huddle close so we can watch the small screen on her phone together. “I hope it's clear enough. I'll put it on the computer later, but look. Jonah, tell Daddy who that is and where.”

“That's Jonah, in the park,” he says, still distracted. His mother gives him a look and he says, “That's me in the park.” I hear him, on the video, singing—“You could be better than a jar”—before I can make out what he's doing. Then I see him on the move, swinging from one bar to the next. There must be a dozen on this particular jungle gym. He's not smooth but he keeps going, slowly, deliberately. He's wearing winter clothes and gloves, which are probably making the task harder. Still, if he feels the strain, he's not showing it. He's certainly not hurrying. His arms are strong from all the practice he's done at home. Cynthia zooms in for a close-up, and that's when I see another unfamiliar expression on my son's face—absolute determination.

Then I watch as two boys, a little bigger than Jonah, come up behind him on the bars. Even after the fact, I can feel a knot of worry settle in my chest as if I am there with him, right now. He's not going fast enough. I almost shout out at him to hurry. But the other boys are watching him closely. They're also humming a tune I can't quite make out. When Jonah finally makes it to the last bar and drops to the ground, the other two boys fall along with him and pat him on the back.

“This is the first time he made it all the way around on all the bars. Right, Jonah?” Cynthia says.

“Right.”

“And who are those guys?” I ask.

“Jonah, tell Daddy who they are.” Cynthia smiles at me and gives me a nudge with her shoulder.

“My friends from the park.”

Okay, then, I want their names, their telephone numbers, land line and cell, their email addresses, Twitter accounts, all their particulars. Cynthia takes my hand and squeezes it. But before I can ask Jonah anything else, he's gone, back to the computer, like none of this is a big deal.

FOUR YEARS AGO, Cynthia and I met Allison when she moved to Montreal from a small town out west. She had a daughter, Emily, eleven, and a son, Matthew, five, two years younger than Jonah was then. Matthew also had autism, but his was more apparent, more distinguishable than Jonah's. He grunted rather than talked. His hands flapped constantly. He seldom made eye contact or acknowledged your presence. When we finally met, though, I avoided eye contact more than Matthew did, and not just with him, with his mother too. I was afraid she would see what I was feeling, what I couldn't help feeling. Perhaps because I had so often been forced to compare Jonah with other kids, neurotypical kids, and so often forced to see how much catching up he had to do, it was an unspoken relief to be able to take note of the differences between our two sons. I was ashamed of myself then for feeling this; I'm ashamed, now, admitting it. Still, the truth was that in Matthew's company I could finally see Jonah and my family in a different light: as fortunate.

There was more to Allison's story. She was getting a divorce. “Can you believe it? Her husband walked out on her. What an asshole!” Cynthia said when she first told me about Allison's circumstances. I nodded because I can only nod at times like this. It's too risky to say anything else. I try to avoid being put in the position of justifying the community of asshole fathers, whom I understand better than Cynthia and better than I care to admit.

“You're one in a million,” Cynthia likes to joke, and while that's not quite true, the statistics we've heard from sources like Harriet are disturbing enough. The debate continues on the internet, but the number you always see is that eighty percent of fathers of children with autism walk out on their marriages. So while I may not be one in a million, I am, arguably, one in five.

Allison, newly single, had come to Montreal determined to leave her old life behind, at least that part of it she could. She had begun a correspondence with a Montreal man online, and even though that no longer looked promising, she was staying. She had found a good school for her son, her main reason for coming to Montreal, and she was devoting what little extra time she had to making her daughter feel comfortable here. She was looking for friends, a job, a house. She was learning French; she was going it alone. Both Cynthia and I were in awe.

“She has pluck,” I told Cynthia. “What I mean to say is that next to her I can't help feeling, I don't know ...”

“Pluckless?”

“You too?”

I was tempted whenever I saw Allison to come right out and ask her how she did it, how she managed everything on her own—in particular, how she did it all without complaint. At least, I never heard her complain. She was British by birth, and so, at first, I assumed she came by this stiff-upper-lip quality naturally. But it was probably something simpler—something like strength of character.
How do you get that?
I found myself wanting to ask her. But I never quite figured out how to bring the subject up. Until one day she seemed to bring it up on my behalf. As we supervised a predictably unsuccessful play date for our kids, as Jonah sat in the corner flipping through an animal alphabet book, and Matthew started, stopped, and replayed the same opening scene from a barely viewable
Thomas the Train
video, the two of them happily lost in Autismland, she anticipated the question I couldn't bring myself to ask.