Bad Animals, page 10
The other day, after another one of these incidents, I dragged Jonah back to a nearby bench and sat him down so I could go over the rules of the road with him yet again. I lectured him about traffic lights and stop signs, about the importance of looking both ways. “You’re almost eleven,” I said, waiting again until he stopped giggling. “You have to know these things. Don’t you ever want to go out on your own or with friends? Don’t you want to drive a car one day?” But, once again, the lecture wasn’t sticking. So I thought, out of the blue, what would a yak do? Or a cow? Or a camel? I thought of More Bad Animals, that book we hadn’t started yet, and the chapter we could devote to traffic safety and autism. We could write it down later, but for now we could talk it out and take some notes when we were back home—before bed, maybe. The kind of thing you always do when you’re procrastinating and looking for a way around a bad case of writer’s block.
“So, listen Jonah, this is a story about how Deedee, remember Deedee the cow, from your book, from Bad Animals, well this is a new story about how she ...”
“What’s La La Land?”
“Never mind that, Jonah, listen ... you have to listen.... So Deedee is crossing the street one day in La La Land and along comes ... who? Help me out.”
“Rooney, the camel.”
“And Rooney is?”
“Driving really fast, in a convert-a-bull.”
“I get it. Convertible ... Converti-bull, right?”
“Right.”
“So his humps stick out, right?”
“Right,” Jonah says.
“Great.” Now, we’re clicking. “Where was I? Right, Rooney is about to run Deedee over because she’s not, not what, Jonah?”
“Not looking.”
“Right. And Moe, the yak, grabs Deedee’s cow tail and pulls her back so she’s off the road just as Rooney whizzes by. And Moe is ... what is he, Jonah?”
“Mad.”
“How mad?”
“Really mad.”
“Yes and you know why Moe is mad? It’s because he’s scared, so so scared. Do you know why? It’s because Moe can’t hold on to his friend’s tail forever.”
MY JOB AT THE cul-de-sac last summer was exactly as easy as it looked. I was to drive towards Jonah, make sure he noticed me, and then under no circumstances run the kid over. That was it. After just a few lessons with his grandmother, Jonah was not only riding his bicycle unassisted and without training wheels, he was riding it exuberantly, recklessly, the way any kid would. True, he had only the most rudimentary grasp of what his brakes were for, but we weren’t focusing on that. Anyway, it was clear he had no intention of stopping, so who needed brakes? It turned out this was wonderful to watch, and I regretted that I hadn’t stuck around all the other times so I could see how he had progressed to this point. How he had gone from being indifferent to pedalling, simply pedalling, to this—this combination, rare in Jonah, of purpose and delight.
“Look at him,” his grandmother said. “He loves it.” Then she added: “We have one problem, though. You see.”
I did. I saw that Jonah insisted on riding in the middle of the road and he couldn’t be convinced to do otherwise. Put another way, I couldn’t run out to the middle of the cul-de-sac and take hold of Jonah’s hood. There was simply no way of knowing what he would do if and when a car approached. My initial thought was to stand guard at the entrance to the tiny circle. Stop each car as it appeared and run a background check on each driver before making it clear to them that they were to watch out for the kid with autism.
Do you even know what autism is? No. Well, here’s some reading material you might want to take a look at. There’ll be a quiz later. No, I don’t care how many times you’ve seen Rain Man. Yes, Hoffman deserved the Oscar. All right, let’s start with the spectrum.
A real plan, however, eluded me until I realized I could simply drive my own car around the cul-de-sac and head slowly, very slowly, towards my son. I felt like Pavlov. I’d devised my own experiment.
On the first try, Jonah didn’t notice me until I was right in front of him, the car securely in park, my foot firmly on the brake nevertheless. Initially, I worried that I would scare him, that he would be startled and fall off his bike; then I worried he wouldn’t. That he wouldn’t notice me or he would and find the whole thing hilarious. Mostly, he was surprised to see it was me in the car. I waited as he zipped by. But when he returned I stepped out of the car and put my hands on the bicycle’s handlebars. I told him to stop for a second and then, as calmly as I could, I explained that from now on whenever he saw a car, any car, not just mine, he needed to steer his bicycle out of the middle of the road and towards the sidewalk. The next time I drove into the cul-de-sac he rode past me again, but we kept at it. Each time I stepped out of the car and stopped him. Finally, I suspect he was so irritated at having his progress interrupted he got the message. The next time I drove towards him he pulled his bicycle over to the sidewalk, watching me all the while. I drove out of the cul-de-sac, then parked the car on a nearby street, and ran back to congratulate him for listening, for following my rules of the road. That’s when I noticed he was exactly where I’d left him, by the sidewalk, standing beside his bicycle. His grandmother was telling him he could get on again and go. But he seemed to be waiting for an okay from me. I hugged him and told him to take off.
“One problem solved,” his grandmother said.
“And another one created,” I said. I repeated the experiment a few more times that afternoon and a few more afternoons after that. Each time, he pulled over as I’d taught him; each time, he got off his bike and waited for me to leave the cul-de-sac. It wasn’t ideal but it was a start. Besides, I knew it was a safe bet that at some point, down the road, so to speak, the next car he would have to avoid would not be mine.
JONAH WILL BE ELEVEN in a couple of weeks. It’s always around this time, around his birthday on Christmas Eve, that I find myself clinging to him being ten the way I clung to him being nine last year and on and on back to the year he was about to turn four and we first received a diagnosis of autism. It’s curious how the feeling hasn’t changed, how even then it seemed like we were running short on time. Age matters for Jonah in a way it doesn’t for neuro typical kids. We are way beyond What-to-Expect milestones now; we are into a serious countdown. The clock is ticking on Jonah’s potential as well as his limitations.
At our December ABA meeting The Consultant and Jessica, now his only remaining full-time therapist, brought him presents. He quickly unwrapped and mostly ignored the puzzle and the book he received and was keen, instead, to return to swinging on his exercise bar. Meanwhile, Cynthia and I held hands and waited as The Consultant prepared to read us the highlights from her end-of-first-term visit to Jonah’s school. Her report was generally positive, she said by way of introduction. Jonah was doing his schoolwork with a minimum of assistance from Jessica. He listened to his teachers, often better than other kids in his class. It’s all that behaviour modification kicking in, she boasted, and Jessica nervously cheered. Swinging, Jonah disappeared behind the door jamb and then reappeared. I was close enough to hear him mangling some lyrics, ‘“You could be better than a car. You could be living in a jar.’” Cynthia nudged me as The Consultant continued to say that while Jonah wasn’t interacting much with his peers in the classroom or during recess or lunch, his behaviours, by which she meant inappropriate behaviours, had diminished, and that’s what counted. That was encouraging. He was not shouting out as he’d done in the past or raising his hand when he didn’t know the answer to a question or laughing for no apparent reason. All very good, she concluded. I took Cynthia’s pen out of her hand and wrote her a note: “What about you know what?”
UNFORTUNATELY, NOTHING IN The Consultant’s report explained why, if everything was going so well in her opinion, Jonah was waking up most weekday mornings bitterly complaining about his own behaviour. That includes this morning. Jonah is in the middle of what feels like a pre-emptive strike, anticipating a day of warding off inappropriate behaviours. When I turn on the light in his room, he piles his Madagascar comforter on top of his small body like his very own ash heap and burrows under it. He’s not hiding from me so much, I’m guessing, as from the prospect of another trying day at school.
“I’m not great, Daddy. Not great.” He says this so sincerely I can’t help smiling. Jonah often sounds and looks younger than he is. (His pediatrician, who missed Jonah’s autism completely, once referred to him as immature. Jonah was barely three at the time.)
“You’re great, kiddo,” I hear myself say and realize I could be more convincing. I need coffee. I need sleep.
“I’m bad, Daddy, what should I do?” His voice is high-pitched and babyish now, and I’m guessing it would break my heart every time if I didn’t know it so well, if I wasn’t so accustomed to its nuances by now. It is part heart-wrenching anxiety, part performance art.
“Speak properly, Jonah, you know how to speak properly.” He is quiet for a moment, long enough for me to wonder if I did something right. Then he grimaces. The good news is he’s no longer mad at himself; the bad news, he’s mad at me.
Jonah still has tantrums but they’re less frequent and don’t last as long as they used to. And while this is something to be grateful for, it also means that when the tantrums come they’re harder to predict or prepare for. It means you’ve allowed yourself to forget. You’ve allowed yourself to be lulled into a false sense of normalcy.
“I didn’t do well on my French test,” Jonah goes on. He is trying hard to modulate his voice, to speak properly; however, I know his statement isn’t true and say so.
“Bogus, Jonesy. You made seven out of eight. Mommy saw your French teacher the other day at the parent—teacher’s meeting and Madame Melanie said you were her best French speller,” I remind him. He hasn’t been bad either. How could he be? He isn’t even out of bed yet.
This is my first task of the day: to get my complaining, occasionally inconsolable son dressed and still remain unaffected by whatever he may say or do, no matter how odd or unsettling it might be. As I’ve learned over the years, a great deal will depend on me—on modifying my behaviour. This can sometimes feel like I’m walking on a balance beam. Even if I don’t fall, the possibility of falling is always in my mind. This is why it’s essential to keep all those negative feelings—self-pity, doubt, disappointment, resentment, just the exasperation that I normally harbour on mornings like this—from showing up on my too-easy-to-read face. Likewise the tone of my voice, so often transparent to my son, has to be controlled. Keep it upbeat if possible, neutral at least. If it’s not, things will get worse. If you don’t believe me, we have compiled evidence, empirical evidence, as proof.
Cynthia keeps a large binder full of behaviour sheets, which we use in Jonah’s ABA program to keep track of what might have set him off on a crying jag or a downward spiral of disparagement, or both, as is the case this morning. Whatever it might be, the binder has the data and the data holds the answer and the answer invariably is: we aren’t reinforcing enough. Or I should say I’m not. That’s why when I finally pull Jonah’s comforter off him with a little too much force I know I’ve messed up. And when I tell him to hurry up or there won’t be time for a proper breakfast, in a tone that’s a little too desperate, too needy, I’ve really messed up.
“I’m not happy we won’t have time for a proper breakfast. Why won’t we have time for a proper breakfast?” Jonah says. I will have to regroup. And do another thing I didn’t want to do this morning: ask Cynthia for help.
“Remember the ABCs,” she says, her voice sleepy and barely audible. She’s in bed and I’m standing in the doorway of our bedroom, wondering how she and I could be so different. How, for instance, she can sleep through all this. In the next room Jonah is whining and slamming his door repeatedly. If I didn’t know what was worrying him before, I can make an educated guess now. He is going to be too late to have breakfast, or, more to the point, he thinks he is. This is the worry I planted in his head. This is plainly on me. The only good news is that Cynthia was sound asleep when I managed to make things worse. It’s a mistake I won’t have to own up to, not right now anyway.
One of the early deals Cynthia and I struck in raising Jonah is that I do most morning duties and she does most everything else. She’ll deny this. She’s always telling me I take on too much as it is. But behavioural psychology, which is at the core of Jonah’s ABA therapy, has a way of infecting a whole family. Having learned to use positive reinforcement on my son, I also have my suspicions about when it’s being used on me. “We’re in this together, remember that,” Cynthia mumbles as she attempts to fall back to sleep.
In more than a decade of marriage, I’ve come to a conclusion: All marriages are mixed in the end. It’s not just that you’re a morning person and she’s not or she’s a vegetarian and you’re not, it’s that everything is contested. These days, everyone calls their spouse their partner, but I don’t get that. In its constant push and pull, its ongoing tally of ups and downs, marriage is more competition than joint venture. This realization becomes unavoidable when you add a special-needs child to the mix. You’re constantly keeping score. Who slept in? Who lost their temper? Who capitulated and asked for help? There’s nothing wrong with asking for help, sweetheart. Who just can’t take it any more? Who needs a break? Well, take a guess.
“WE LIVE BY ONE ANOTHER’S variable weather,” Peter De Vries says in The Blood of the Lamb, and he’s turned out to be right when it comes to Cynthia and me. I want her to feel what I’m feeling. Hopeless. I am slouched in the doorway, waiting as she sits up in bed and reaches for her glasses. She does it calmly. Calmly, too, she takes note of my poor posture and offers advice. “Listen, get a behaviour sheet from my office and take the data. It is going to help, really. Do the ABCs.”
“Fuck the ABCs and fuck the data,” I say under my breath as I walk away, which is, incidentally, the way I say most things these days: to myself, and in a position of retreat. Someone once said that a woman only falls in love with a man when she has a higher opinion of him than he deserves and I’m starting to wonder if this fact has, of late, occurred to my wife. Or if it’s occurring to her now as I have to wake her up again to ask where the damn binder with the damn behaviour sheets is hiding.
ABC, I should explain, stands for “antecedent, behaviour, consequence,” and it is one of the guiding principles in ABA therapy. The theory is if you know what caused your child’s behaviour then you can understand what the behaviour is and you can figure out what the most suitable consequence would be. For example, if he’s seeking attention, you ignore the behaviour, though not the child. If he’s avoiding a task, then you make sure he completes it. We were taught this when we hired The Consultant seven years ago now. Everything Jonah does, she told us, can be analyzed if we rigorously, consistently record the ABCs. The implication has been clear from the beginning—our son is not a mystery, he is a puzzle. I’m not convinced. In his essay “Open Secrets,” New Yorker writer Malcolm Gladwell argues for the essential distinction between the two. With a puzzle, if you uncover the crucial missing piece of information then the problem is solved. But with a mystery, there is no missing piece. In fact, the more things you learn about a mystery, according to Gladwell, the more unsolvable it’s likely to become.
“The binder is not in the office. Do you want to tell me why we can never find anything around here?”
“Not right now, I don’t. Look in the therapy room then.”
Lately, I’ve watched Jonah get into shouting matches with inanimate objects and it’s strangely encouraging. After all, it is a kind of conversation. It is also funny. If he’s having trouble hanging up his jacket, for example, he will tell off the recalcitrant garment, give it a final warning. “You better stay on the hanger.” Sometimes he’ll shake his fist at it: like John Cleese, at the end of his rope, in Fatuity Towers. When I find the binder, I also plan to give it a piece of my mind: You bastardy how dare you disappear when I need you? How dare you make an idiot of me? I can do that myself
“Where exactly in the therapy room am I supposed to look?”
“I don’t know ... wherever.” We are weary people. Fatigue is our default position. It could, if we wanted, explain everything. But to Cynthia’s credit, she doesn’t take the easy way out. I could hardly blame her now if she pulled the covers over her head, if she threw a pillow at me, if she screamed, but she doesn’t. “Sweetheart,” she says with a forced patience and a tone I recognize. I know what’s coming: the pep talk. “You can do this. You can. And once you write things down you can start to, you know, properly analyze the problem.” The truth is I don’t need behaviour sheets or a binder to be B.F. Skinner or Ivan Pavlov, to know that the problem with Jonah this morning—the antecedent—could be anything. It’s like proofreading a manuscript—you go over it again and again and somehow you still know there’s something you missed. Jonah might have woken up with a stomach ache; he might have had a bad dream. Then again, this morning’s tantrum might be attributable to something that happened at school yesterday or last week or last year. Or it might be everything. It might all be accumulating, all the hours at school and hours of therapy, all our badgering and desperation. With the positive reports we have received from The Consultant and from Jonah’s teachers, we forget sometimes the toll, the incalculable toll, that behaving appropriately takes on him and us.
WHEN HE WAS LEARNING to speak Jonah routinely confused his pronouns, saying “you” when he meant “I.” At first, we thought this was cute. Later, we learned there was a term for this—“pronominal reversal”—and that it’s common among children with autism. It’s sort of like neurological crossed wires; it causes children on the spectrum to echo what is being said. But I’m not sure crossed wires are all that’s going on. If there’s no distinction for Jonah between “you” and “I,” then there’s no distinction either between everything being done by him and everything being done to him. In the last few years we’ve taught him his pronouns the way we’ve taught him everything else, methodically, step by step, according to the ABA rule book. But he still slips up sometimes, particularly when he’s upset or anxious or just inattentive. In his vulnerable, open heart and his curious, exceptional brain, Jonah still can’t help thinking the world is against him. And, for this reason, he so often seems at its mercy.
