Bad Animals, page 9
At Hillcrest, the parents stand out as much as the kids. I think of us as being on a spectrum too—ranging from cheerleaders (the my-kid-right-or-wrong crowd) to deadbeats (the couldn’t-be-bothered gang). Mostly, though, we are a dispirited group. We are like members of a struggling sports franchise; we should have T-shirts printed with our team name on it: Last Resort. On those occasions when I attend meetings or fundraising events at Hillcrest, there is something palpable in the air, a kind of low-grade sadness. Let’s just say, a lot goes unspoken whenever we meet with teachers or administrators. After all these years, I think I’m beginning to realize what it is: a pedagogical version of the “don’t ask, don’t tell” policy. If you agree not to ask how your child is doing and by that we mean really doing, we will agree not to tell you, not really.
Still, I admit Hillcrest has been good for Jonah. He’s learned to behave there, to control his impulses, his everyday tantrums and frustrations. If he doesn’t always fit in, he is still generally accepted by teachers and classmates. Cynthia, when she reads this, if she ever does, would insist on making this clear. She’d also point out that if I ever took the time to talk to some of the other parents I’d know I was wrong about them. They are not especially sad. No sadder than anyone else, sweetheart. Incidentally, when was the last time you attended a school event or meeting? Mainly, though, we’re grateful grade five is going well so far. Jonah’s first-term report card showed improvement from last year in French. In a new subject, social studies, the teacher’s comment was: “Jonah makes a positive contribution to classroom activities.” This remark, incidentally, represents years of ABA therapy: first getting him to raise his hand at all; then getting him to raise it at the appropriate time; finally, getting him to raise it only when he believes he knows the answer. In subjects that are harder for him—like reading comprehension and math problems—he’s struggling, but the teachers are encouraging. They recommend tutors, extra homework, doing the best we can. Most of all, we’re just glad we’ve made it to November, especially since it didn’t look like we would at the beginning of the school year.
Late last August, Hillcrest’s principal called Cynthia at five o’clock on a Friday afternoon on what was officially Jonah’s final day of summer vacation. The reason was to inform us that she wouldn’t be able to keep the verbal promise she’d made a few months earlier. It was the previous June that she had informed Cynthia that Jonah could have his ABA-trained shadow, that’s to say Jessica, attend grade five with him. In short, we’d have to send Jonah by himself, starting, well, on that coming Monday morning. Cynthia got off the phone, pale and trembling. I asked what was wrong; I tried to get her to tell me, but she insisted on waiting until Jonah’s grandparents had picked him up for the evening before she told me who had called and what about.
“It’s not good,” she said, slumping into my arms, finally providing an explanation to match the look on her face. She was on the verge of tears, but she didn’t cry. Instead, she breathed deeply a few times and clung to me. I massaged her neck and told her everything was going to work out, but my heart wasn’t in the promise. Frankly, my heart is never in such a promise any more. This is another fact of life with autism. There’s always some new occasion you are expected to rise to, some new challenge you are not sure you will be able to meet. These days, whenever I come upstairs from the basement, after spending a few hours at work on the memoir I am supposed to be writing, I have the same feeling—that I am about to walk in on some crisis, actual or emotional, looming or already in progress.
Still, we’d faced this particular crisis before—annually—a fact I reminded Cynthia of. This was my uncharacteristic attempt at perspective. Maybe everything would work out this time because it had before. Ever since kindergarten Jonah was allowed to have an ABA shadow, hired, trained, and paid by us, accompany him to his classes. Still, we were continually advised that this unique accommodation was just that—unique. It couldn’t be expected to last. Hillcrest’s administrators as well as some teachers weren’t particularly fond of the idea of parents hiring their own shadows, shadows the school had no influence over and frequently regarded as spies. What was there to prevent one of them from reporting every little thing that happened in the classroom to their employers, the children’s parents? After all, parents like us were, from the school’s point of view, overprotective and hypersensitive, prone to either over- or underestimate our children. We were helicopter types, that awful, dismissive term, and we were a safe bet to demand special services for our special children.
At the end of every month Jonah comes home with a newsletter from the principal calling our attention to upcoming events and pedagogical or ped-days, the days teachers routinely take off to do who-knows-what. There are reminders, as well, of our parental responsibilities. The information is useful, though often condescending. We are lectured about everything from suitable footwear for our children to proper nutrition. These newsletters invariably end with an inspirational quote or poem about the importance of teamwork and trust between home and school. In “Whose Child Is This?” an unknown author penned this paean to the happy consequences of parent-teacher cooperation:
“Whose child is this?” I ask once more
Just as the little one entered the door
“Ours,” said the parent and teacher as they smiled
And each took the hand of the little child
“Ours to love and train together
Ours this blessed task forever.”
Who, I always wonder, is asking this question? Who wants to know?
Another month, another anonymous poem—it’s about two sculptors, a teacher and parent, joining forces to mould a child’s mind out of clay—even creepier this time. The tools the teacher uses are books, music, art, while the parent uses “a guiding hand and a gentle loving heart.” What, we don’t read? Speaking of which, why are these inspiring little ditties always anonymous? I think I can guess: who would want to sign them? Still, I confess I wait for the next poem with a perverse kind of anticipation. I want to see just how clueless they will be and how annoyed I will become. By now, Cynthia dismisses my monthly complaints with a simple joke. “Hormones,” she says. Everyone in this house is, by necessity, a comedian.
The truth is that the relationship between school and home, particularly in the case of a special-needs child, is often adversarial. We’d heard a story, perhaps apocryphal, of a grade-six teacher at another school who verbally abused a boy on the spectrum—rumour had it the word retard was used, as in “you fucking retard”—and the boy’s shadow, a private ABA shadow, relayed the details to the boy’s parents, one of whom, it so happened, was a lawyer. We heard about the school and the school board being threatened with a civil suit if proper disciplinary action wasn’t taken. At the very least, the teacher would have to take sensitivity classes and apologize to everyone involved. All of which seemed to be a reason why a school like Hillcrest, with its high proportion of students on the spectrum and otherwise coded kids, was looking for an excuse to be free of shadows like ours. We were, as far as they were concerned, a lawsuit waiting to happen. So it wasn’t a surprise that they’d eventually come up with some excuse to get rid of Jonah’s private shadow. The only surprise was that they’d come up with this excuse the day before our son was going to start grade five.
“But what’s the reason? What are they saying?” I asked Cynthia, who shrugged. She’d already decided to spare me the details for my sake and her own.
“You don’t want to know,” she said and retreated to her office, to go online, gather her resources, most of all, gather herself. I followed her there and found her hunched over her desk, breathing deeply. “All right, I’ll tell you, but ...”
“But what?”
“Don’t freak out. The principal said something about a two-tier system—how they couldn’t have a two-tier system. She apologized, sort of, but she said it wasn’t her decision. It was the school board’s.”
“Was it her decision to wait until the last minute to tell us? And what the hell does that mean—a two-tier system?”
“I don’t know exactly. I think it means if some other kids can’t afford to have their own private shadows it’s not fair for Jonah to have one.”
“Let me get this straight. Because we’re trying to help our son become more independent, more integrated, we’re undermining a system that doesn’t work? God forbid, they should train their shadows so they could deal with kids with autism. The lowest common denominator—that’s their pedagogical philosophy, is it? That’s how they spend their ped-days—coming up with this ... this ... Does any of this make any sense to you?”
“It doesn’t, and don’t shout at me.” Cynthia’s head was in her hands now.
“This is bullshit. And I’m not shouting at you.”
“You’re shouting next to me.”
“I’m sorry.” I was sorry. But all I could think of was the scene with Al Pacino from the cloying movie Scent of a Woman where he’s blind and he gets up in a room full of snooty prep school administrators and gives his Oscar-winning flame-thrower speech. “Remember, he says, ‘I ought to ...’”
“I don’t have time now.”
“‘... Take a flame thrower to this place.’ That’s how I feel. Where are you going?” Again, Cynthia was on the move. I lost track of her for a moment and then heard her purposeful, deep breathing coming from our bedroom. I was still ranting when she held up her hand. She was on the telephone, a fact I was ignoring.
“Remember what they used to teach us in school about how to spell principle and principal? The principal is your pal. Ha! I’m going to write about this, you know. I swear. It’s going right into the ... I mean, they can’t get away with this, can they?”
“That’s what we have to find out,” Cynthia replied. “They didn’t give us notice. We have that going for us at least. I also have the email the principal sent me last June, at the end of grade four, saying we could use our own shadow for this academic year. And, please, don’t you see I’m talking here?”
“Who to?”
“My brother.”
Cynthia’s brother is a lawyer. As it turned out, so was the father of another child in the school on the spectrum and in the same situation as Jonah. Promises had been made to him and his family, too, and also broken at the last minute. So we had a case or a cause. We presented it, via email, to the school board and waited. Jonah stayed home for the first few days of the year, but eventually we got the reply we were hoping for. We bought him one more year, this year, grade five, with his shadow. In the end, we chalked it up to one more close call and then proceeded to not think about it any more. Cynthia and I have happily resigned ourselves to doing what we do as a matter of course now: worry about next term next term, next year next year. Cynthia works hard at staying hopeful while I plot my revenge—on our pal the principal, for instance. You can always put it in your book, sweetheart. Just don’t use anyone’s name. Jonah still has one more year to go in that place.
LEAVING ASIDE The Book of Job’s phony fairy-tale ending, disappointment is what the story is about. It’s what gnaws at Job, even worse than the tragic events of his life, worse than God’s silence, worse than those festering boils. Disappointment is the itch he can’t scratch. There’s no question God screws with him, but Job finally has to take some responsibility for all his whining. He has to move forward to stage five—acceptance. Life goes on, even on the ash heap.
Anyway, my advice: if you’re going to read The Book of Job, read it on a warm summer evening. Take it out into your garden, if you’re lucky enough to have one, just as the light is fading. That’s what I should have done. I shouldn’t have waited. I should have been rereading it a decade ago. On one of those evenings when my infant son was asleep on my chest, our breath rising and falling together, in sync; and when Cynthia was at the kitchen table, scribbling on a notepad, planning our collective future. “Plans you shouldn’t worry your pretty little head about,” Cynthia liked to say back then and still says sometimes. Vacations, real estate, Jonah’s bar mitzvah, his first car, his college fund, his wedding. The sky was the limit. Grand, long-term plans that would have scared me silly, it’s true, if I’d ever been asked to listen to them. What, I wonder, was I doing instead? It only occurs to me now that The Book of Job is not merely about disappointment or suffering or injustice; it’s also about counting your blessings. That is its true literary achievement. To make sure we’re grateful for every little thing we have, every camel, every goat, each and every patch of unblemished skin. Gratitude is the takeaway. Only don’t leave it too late. Don’t wait for trouble to come.
SIX
Variable Weather
Last summer, Jonah learned to ride his bicycle in the cul-de-sac, a small circle really, behind his grandmother’s house. There’s hardly any traffic there, so that when cars do appear they do so with what we hoped, fingers crossed, would be sufficient warning. We were depending on the fact that the driver would have plenty of time to see Jonah or, worst-case scenario, time for him to be guided to safety. Jonah’s grandmother volunteered to teach him once his training wheels were off, and we took her up on the offer and removed them. Actually, Cynthia did, after I complained about rusty bolts and improper tools. “This isn’t as easy as it looks,” I muttered under my breath, loud enough for Cynthia to hear, adding, “Nothing ever is.” For her part, Cynthia looked at me with her standard mix of amusement and quiet restraint. You always say that, sweetheart. In the end, she borrowed some WD-40 and an adjustable wrench from a neighbour and, with some persistence and surprising, embarrassing ease, removed the damn things.
More difficult than removing the training wheels was making the decision to remove them. Jonah wasn’t lobbying one way or another. Most kids his age would be clamouring for this first taste of independence, but when we asked Jonah to choose—training wheels: yes or no?—he was indifferent. In the end, Cynthia and I disagreed about how to proceed. On my part, it wasn’t just about being a klutz with a wrench. I wondered if we might be rushing things. I thought we might want to wait until Jonah was more confident steering, braking, wearing a helmet, and understanding the rules of the road. A distracted and tentative pedestrian, he is never left alone crossing the street, but I constantly worry about the day he will be. Given that, I couldn’t imagine him being ready to ride a two-wheeler. That was my side of the debate. Cynthia, however, had had an urgent look in her eyes. She didn’t have to say anything. She just had to think it: Most kids Jonah’s age are already riding a bicycle. Meanwhile, I was thinking: Didn’t you get the memo? Jonah is not most kids his age.
The first few times I dropped Jonah and his two-wheeler off at his grandmother’s I didn’t stick around. I left as soon as I could. I didn’t want to distract either of them—that was my excuse—and I promised to be back in an hour. Even so, as I was getting back into the car, I kept the door open to eavesdrop. I heard Jonah giggling at his grandmother’s warnings, at her insistence that he keep his helmet on. One time, I also heard a tiny crash. Jonah, who will cry for reasons it can sometimes take us days, considerable paperwork, and a costly meeting of a team of ABA therapists and our consultant to unravel, doesn’t cry when you expect him to—scraping his knee, say, or bumping his head. So he’d be silent after what I assumed was a fall and I listened as his grandmother praised him, telling him he was doing fabulous, telling him not to worry, and that he wasn’t going to fall again. She wouldn’t let him. Then I’d hear her shouting, “Pedal, Jonah. You have to pedal to go.” I sat in the car for a moment, marvelling at her patience, but not just hers. I marvel at everyone who manages to be patient with my son, even for a little while: therapists, teachers, classmates, neighbours, store clerks. I should have watched her, maybe learned something. Instead, I drove away.
The real reason I wouldn’t stay to watch was because I couldn’t. I have a lousy imagination, remember, and I couldn’t imagine how this was going to end well.
WHENEVER JONAH AND I are out walking, I try my best to leave him to his own devices at intersections and crosswalks. I view it as a kind of training run for the future. Still, I make sure he’s wearing a hooded sweater, even in warm weather, so I can keep a firm but largely undetected grip on him. Too often, I’ve had to yank him back to the curb, an action which is usually followed by an angry lecture about the importance of paying attention to the traffic. You can’t be drifting off into La La Land, I told him once and immediately realized my mistake. He found the phrase La La Land irresistibly funny. This is not a joke, I told him. This is serious. By then, I was shouting and he was scared, just not as scared as he should have been, as I wanted him to be. Instead, his shock was tiny and temporary like the kind you’d receive after scuffing your shoes across a carpeted floor. The spark was quickly gone and I uneasily watched his expression shift—from fear to a small, gradual, unconcealed smirk. He repeated what I said—“This is not a joke”—then repeated it again. I knew I needed to be more patient, react properly, according to the rules of ABA, information I should have had at my fingertips by then. I was, I also knew, giving undue attention to his inappropriate behaviour. But the pulse in my neck was throbbing. I was scared and the fear was not dissipating. Human variables, that’s the problem with intersections. There was no foolproof way to test or trust my son’s knowledge or lack of it when it came to something as simple and crucial as crossing a busy street.
