Bad Animals, page 21
“Where are they now? They should see you now.” I ran to the door and shouted down the empty hall, “Come see her now. She’s hysterical.”
“Sweetheart ... the stitches.”
But once Dr. K. arrived we weren’t laughing any more. Phototherapy was simple and safe, he explained, but it required a few precautions. Namely, someone had to stay up with Jonah until he fell asleep.
“He’ll be wearing a mask to protect his eyes and we wouldn’t want that displaced at any time. It could damage his vision somewhere down the road,” Dr. K. added matter-of-factly. Then he looked me up and down as if he were measuring me. “This is a job for the father, obviously.”
I spent that night in the nursery while Jonah squirmed and scratched at his face and at the paper mask covering his eyes. I talked to him, mainly, about his mother and my late parents, about my sisters, his aunts and Cynthia’s parents, his grandparents. “It’s a small tree, Jonah, but your tree.” It was our very first one-sided conversation, though it didn’t feel that way at the time. When I ran out of personal stories, I told him about fictional characters and what jerks they could be: Holden Caulfield and Molly Bloom and Jay Gatsby. Literature is one long parade of human folly, kiddo. If it teaches us anything, it teaches us that no one ever learns from their mistakes. We just make the same ones again and again. We are flawed creatures, every single one of us.
I remember a nurse glaring at me and conspicuously clearing her throat as if to say, “Is that really appropriate? Here?” I ignored her and told Jonah about Anna Karenina—“I know, I know, how could she choose Vronsky?”—and Oedipus Rex. “This one you won’t believe.” All the while I kept both hands on Jonah’s protective mask. He squirmed, half-asleep, for hours. Then he was awake and agitated and crying in that way infants cry: with every ounce of energy and commitment they have. As if he were a competitor on American Idol. There wasn’t much I could do to comfort him so I looked for the nurse, for instructions, but she was gone. I knew I couldn’t pick him up, so I just patted his head and told him about all the things we were going to do together, about Expo games and Preston Sturges. I sang a few lines from Lou Reed’s “Beginning of a Great Adventure.” I quoted what I remembered from the beginning of Ulysses. The kid might as well know, right from the start, that his father was a pretentious clown. I was tired, and the heat from the tiny block of lamps—they were attached to each other like a miniature section of lights at a ballpark—was as irritating as fibreglass on my skin. All Jonah wanted to do was scratch; for that matter, so did I. Still, whenever his crying became unbearable, his squirming unsettling, I focused on the hot-shot doctor’s words “damage” and “down the road” and I kept the mask secure. It was, to that point, the hardest thing I ever had to do.
The following afternoon an intern glanced at our son’s metal chart and explained that while Jonah was doing better, his boss, Dr. K., had recommended an additional round of phototherapy. “Better safe than sorry,” the intern said or words to that effect. By then, we’d been in the hospital for eight days and I knew one thing: we needed to get out. If Cynthia didn’t have post-partum depression by now, another day was likely to push her over the edge. I’d started reading the pamphlets—symptoms included insomnia, intense irritability and anger, overwhelming fatigue—and I was convinced I already had it.
“We’re leaving today, this morning, as soon as possible.”
“But Dr. K. ...”
“I don’t care who said what. We’re taking our baby home today.”
It was frustration talking, fear, too. I couldn’t bear another night with Jonah under those lamps. Mostly, though, it was conviction. In that moment, I was certain I was doing the right thing for everyone involved, for what was now my family. I was certain we’d be fine once we were home, the three of us. (We were, as it turned out. Once we got Jonah out into the sunlight, the jaundice disappeared. “That’s all you had to do,” our midwife told Cynthia later. “You just had to take him home and put him in the window. Like a houseplant.”)
“My hero,” Cynthia said as we got into the car quickly, like we were planning a getaway. Still, even with my hands gripped tightly at ten and two on the steering wheel, I couldn’t quite keep them from shaking. I was ready, even as I turned the key in the ignition, to do a 180, take the hospital’s advice, and stay another day or two, if necessary. What difference would it make? What was I trying to prove? I was new to conviction, and I was learning that even for a new father it is a fleeting thing.
Close calls. When you become a parent for the first time you get a crash course in the close call. How parenthood, like most sports, is a game of inches, of “if this, then that.” True, all those novels I’d read had taught me the world was a precarious, fragile place, but it was likely a fact I took for granted. Now, I no longer could. Is the kid’s car seat attached securely? Did I buy winter tires? Am I a good enough driver? You might as well be a hack Hollywood screenwriter pitching a disaster movie for all the time you spend dreaming up worst-case scenarios. Eventually, you relax. But the first time you notice your baby picking up a marble and putting it in his mouth or the first time you take your eyes off your toddler in a bookstore and he disappears, for a second, just a second, you are reminded. Yes, you think, I remember that feeling—that’s dread. Of course, when you learn your child has autism, that dread not only returns, it settles in for the long haul.
“Now what?” I finally asked Cynthia as we drove out of the hospital parking lot. Both my hands were still stuck to the steering wheel. Her spirits had lifted in an instant. She was smiling and unwavering, a woman in charge. At last.
“Take us home, sweetheart.”
“COME SEE,” Cynthia says. “Really.” She peeks her head into the kitchen from the therapy room where she and Jonah are working on a timeline together. This is the latest in an ongoing series of arts-and-crafts projects Cynthia and Jonah have embarked on. They paint and glue and colour together. They’ve made calendars and plaster masks and invented a board game called Let’s Discuss Picking Your Nose and Other Adventures. The game, Cynthia explained, is made up of useful everyday advice, social stories we can act out with Jonah. You roll the dice and learn something about “Waiting in Line” or “Using a Kleenex” or “Speaking in a Normal Voice” or Jonah’s current favourite, “The Rules of Farting.” (Rule #1: Don’t do it in public. Rule #2: If you have to do it in public, say excuse me.)
“I got the idea from you, when you were reading those Let’s Talk About books with Jonah for his homework; you said you should write a book called Lets Talk About Autism. I thought that was a good idea.”
“And you did it instead?”
“You’re not mad, are you?”
I’m not—does anyone really think I’m the kind of person who should be writing a self-help book? Still, it probably doesn’t hurt for Cynthia to think I am a little bit pissed off. Which makes me think of another potential title for the Joy Berry catalogue: Lets Talk About Passive-Aggression.
“This time I think he’s interested ... really.” There’s that word again—“really.” Cynthia repeats it like she’s preparing for a debate. Like it’s just the gimmick she needs to win some future and inevitable argument we are likely to have. I allow myself a minimal amount of skepticism. Show me, in other words, why this is different. This is, incidentally, the way Cynthia and I always seem to end up talking about Jonah; we weigh everything. What might be good and what might not be; what can be done about what is good and what has to be done about what is not. We were helicopter parents long before either of us had ever heard that casually disparaging term. When you are the parent of a child with autism you hover. What else can you do? The dishes, I suppose, which I’m up to my elbows in now.
“Leave them,” Cynthia says. “And come in here.”
“I just want to finish,” I say over the sound of the running water, not to mention my running internal commentary. Still, I can hear enough to eavesdrop and gauge how things are going. So far so good, it sounds like. Jonah is not stimming or giggling, not getting frustrated or angry, which are his usual options when he’s not doing exactly what he wants. Instead, he seems genuinely involved in estimating how old he might have been when we drove to Toronto for a cousin’s wedding. We have a photo of him, in a sports jacket and clip-on tie, holding a microphone. He wowed the crowd with a karaoke rendition of “Swinging on a Star.” On his favourite line about “all the monkeys” not always being in the zoo, he jumped up and down, his arms waving, his hands scratching his sides. He was three then, but he still asks me once in a while about that line, about why it’s so funny. “Because we’re all monkeys,” I tell him. One day, I figure I’ll use it as an opening to a social story about the spectrum, about how it’s really overrated. Trust me, Jonesy, I’ll tell him, we’re all part of it, life’s rich pageantry.
“Was I a baby then? Or a toddler?” Jonah asks Cynthia. These questions are persistent, but encouraging nevertheless. They qualify, around here, as conversation starters because they are a rarity—questions Jonah doesn’t insist on first knowing the answer to. They are asked spontaneously, without his usual twisted syntax. This is what’s called dynamic as opposed to static conversation, and it is, according to Cynthia, what we need to start cultivating. That’s because in a dynamic conversation, a person is no longer just concerned with their side of the conversation. That’s also why the first time we hear Jonah say anything new or unexpected, we get a glimpse of what it might be like if he talked like this all the time, if he had a capacity for real conversation, one where no internal script is followed, no outcome predetermined by either party, where he doesn’t freeze up or give rote answers like a person struggling to understand and speak a second language. It’s easy to take for granted—this capacity to engage with others through conversation, to chat, shoot the breeze, schmooze, gab, make small talk. “Communicating with one another for no immediate reason has to be the most quintessentially and exclusively human of all our behaviours,” author and editor Daniel Menaker writes in A Good Talk: The Story and Skill of Conversation. But even though Menaker is right, I still resent the way he puts it: “has to be,” “quintessentially ... exclusively human.” I’m guessing he’s never spent an afternoon in the company of an eleven-year-old with autism.
ABA therapy is winding down in our house. Cynthia and I are talking more, instead, about Seymour Gutstein’s book on RDI or Relationship Development Intervention, the book I promised her and Harriet I would read. This is where these theories about static and dynamic conversation come from. This shift in emphasis from ABA to RDI is an indication, among other things, that Jonah’s progress in social interaction has not been what any of us hoped it would be by now. RDI, Cynthia points out, offers more possibilities for improvement in his ability to make friends and conversation.
In the other room, I hear Cynthia and Jonah discussing a trip we took a few years ago to Pare Safari, a drive-through wildlife park about an hour south of Montreal. Jonah seizes the opportunity to ask his mother to answer a question about the difference between zebras and zebus. Zebras, we were warned before we entered the park, were bad-tempered and untrustworthy. “Remember, Jonah,” Cynthia says, “they told us not to feed them because they bite.” Zebus are just fancy cattle; they have that show-offy hump, but they are gentle and yielding and predictable. “Was Jonah two or three when we went to Pare Safari?” Cynthia shouts to me from the therapy room. “Remember,” she goes on, her attention back on Jonah now, “a zebra stuck his head inside the car window looking for food and slobbered all over Daddy before he could roll up the window. And Daddy freaked out. It’s lucky you were there, Jonah, to tell him not to be scared. To tell him that zebras are herbivores.”
“Herbivores don’t eat people, they eat plants,” Jonah says, sounding a little like he’s on a game show.
“That zebra was still planning to take a bite out of me ... for sure,” I pitch in, turning off the water and shouting out my recollection from the kitchen. “You know why? Because I’m sweet; that’s why your mother calls me sweetheart all the time. Am I right?” I’m probably a little too anxious to be acknowledged. Neither Cynthia nor Jonah reply, though I can imagine the look that passes between them, the one that says, There he goes again, misremembering, making stuff up, on a tangent, missing the point, making it all about him. Frankly, I don’t remember this specific incident but I have come to accept the fact that most of the reminiscing my wife and son will do for this project and undoubtedly for upcoming ones will, disproportionately and inevitably, focus on the times I may have either freaked out or was, in their opinion, on the verge of freaking out. I’m not complaining. I’m acquainted with the unreliable nature of memory; I understand the appeal of creative non-fiction. I know every story needs a fall guy. I’m not only ideal for the part, I embrace it.
“Go ask Daddy,” I hear Cynthia say. I turn, and the two of them are standing by the door. Cynthia nudges Jonah.
“Daddy?”
“Jonesy?”
“When can I be a baby again?” he says.
“He wants to read animal alphabet books,” Cynthia says. “But what did we decide?” I get it: this public service announcement is intended for both of us.
“I can’t,” Jonah says.
“Why?”
“Because I’m eleven now and you can only read animal alphabet books when you’re a baby?” Like most kids, Jonah has a way of making every statement sound like a question. Like most kids, he pursues loopholes with the vigour of a rookie defence attorney in a John Grisham novel. However, unlike other kids, neurotypical kids, he’s not always good at concealing this fact. He is an open book, albeit one that sometimes seems to be printed in an illegible font—wing-dings. Being a literalist is a common feature of autism. A friend told me a story once about driving along a country road in the winter with her niece, who was three at the time, and as they got to an icy patch, my friend shouted out to the backseat, “Hold on to your hat!” A moment later she glanced in the rear-view mirror and could see her niece, looking earnest and determined, clutching her winter hat with both hands. Children learn, eventually, to understand that this kind of figure of speech is not meant to be taken literally. Jonah has yet to learn this. He doesn’t get sarcasm either. Sometimes, I will say something ludicrous on purpose, like we’re going to eat a hippo for lunch, and he will just look at me like I’m crazy. I prompt him to say something like, “Yeah, right,” and he does, but he gets the tone of this rejoinder all wrong. He says it like he means it instead of like he’s challenging or mocking me. Still, I keep at it. I keep saying the dumbest things I can think of. This is a technique I picked up from keeping my promise and finally reading that RDI book. The idea is for the parent to be deliberately obtuse, thereby giving the child the chance to think for himself and, ultimately, be the one in the know. Deliberate obtuseness—the consensus is it’s another role I was born to play.
“That’s right, Jonah,” Cynthia says. “Only babies or maybe toddlers read those kinds of alphabet books and ...”
“And you can’t go back in time,” Jonah says. He’s been coached on this line, and as he says it I notice Cynthia is staring at me. I shrug, part apology, part excuse. She knows what I’m thinking, the same thing Jonah is: Why the hell not?
“Daddy?”
“Jonesy.” A slyness sneaks into the corners of his handsome mouth, a Eureka smile. He’s found his technicality, his loophole.
“When,” he asks, “can I be a toddler again?”
ONCE JONAH IS IN BED, Cynthia takes me on a tour of the timeline. We sit on the floor and study the long, narrow piece of brown construction paper that extends from one wall of Jonah’s therapy room to the other. That makes it about eight feet long—a work in progress, according to Cynthia. The years of the decade—from just before Jonah’s birth to the present, to the most recent occurrence, specifically Daddy talking nonsense in the kitchen about man-eating zebras—are written on the bottom of the paper. There are a couple of pairs of scissors and tubes of glue at the corners, keeping the unwieldy sheet from curling. We are also surrounded by photo albums, which Cynthia and Jonah were rummaging through a couple of hours earlier, looking for old pictures to place in the appropriate year. Like 1998.
“I was so big,” Cynthia says. She’s flipping through a series of photos of herself pregnant. “This was just before we went to the hospital. It had to be. Remember when ...”
“I remember.” I struggle to my feet ahead of Cynthia and then hold out my hand to help her up. We are old parents. We have become old fast. I can see it in the photos—how we’ve aged. I had a lot more hair a decade ago. My beard was black. I smiled easily. If I was worried back then about what the future held, I can’t see it in these photographs.
“Look at me, at that belly,” Cynthia says.
“You look sexy” I say as I put my arms around her from behind, nuzzling her neck.
“I look like a hippo.”
“You were aglow.”
“A glowing hippo. Did you see this?” Cynthia says, leaning down to retrieve two blank panels from the floor. One has the words “bar mitzvah” on it, the other “high school”; Jonah has written both in his most legible handwriting. “We’re going to attach this next time. It’s a way of talking about the future. It’s a good sign. You know, it’s normal for him to talk about what he wants to be when he grows up. Like how he wants to drive a truck. He didn’t used to. Remember, just a couple of years ago if you asked him the same question, he’d say he wanted to be a giraffe. Remember, I said I was worried about how he was going to make ends meet. Oh, come on, that’s funny.”
“I thought we weren’t talking about the future.”
“You and I aren’t. Jonah and I are. You and he might also. Has he asked you what ‘grounded’ means?”
“A few times, I’d say, a few hundred times.”
“Right, I know. But it’s a good thing overall. He’s starting to show an interest in who he was and who he will be. How did you explain ‘grounded’?”
