Bad Animals (26 page)

“ALL RIGHT, HERE'S MY idea for another appendix,” Cynthia says.

“Another?”

“Should it be appendices? I'm thinking advice for family and friends. I'm thinking about two lists—what's helpful and what's not. For example, not helpful is saying, ‘I knew there was something wrong with him.' A lot of people said that.”

“Who?”

“Never mind. Also, not helpful: telling me about methods of interventions well into the diagnosis as if you know better, as if I haven't been reading and researching since the moment I got the news. And, oh yes, don't talk to me about vaccines. Not helpful, not interesting.

“Then there are the people who dump you the moment their child says that your child is no fun to play with. Even the nicest people you can imagine. If their three-year-old tells them he or she doesn't want your child at their party, you're suddenly off the party list. I know that kids like Jonah don't act like other kids and I know that makes it difficult. I understand children will say they don't want to play with him because he keeps asking them, ‘What's your name? What's your name?' But it shouldn't be up to the children to decide.”

“And that happened?”

“I don't want any names mentioned, but there was the time I called a friend, well, you know, one of those friends you make when you have children the same age. We'd had play dates—you know,
before,
just before—and then after I called to invite her son to Jonah's birthday party and she let it slip her son had his party a week earlier. She said, ‘Oh well, I thought Jonah wouldn't be comfortable in a big group with so many kids.' Did you ever read the book by Temple Grandin's mother? What's it called?”

“A Thorn in My Pocket.
No, I haven't gotten to it yet.”

“Right, not yet. So Temple's mother talks about Temple growing up in a Boston suburb, a kind of
Leave It to Beaver
environment, and one of the rules of this little community was that everyone was included. Amazing, really, when you think this was the fifties. Temple wasn't exactly an easy kid either. She had tantrums, bad ones. But it didn't matter. The mothers banded together and made sure she was always included.

“I wish people today were that enlightened. The number of times other mothers have ensured that Jonah was included in an activity has been so, so rare. I realized that this summer at the neighbourhood pool. Jonah and I happened to meet the mother of a couple of kids from Jonah's school. She not only told her kids to play with Jonah, she made sure they did. I didn't even ask her. It was very kind of her. I thanked her after and told her how unusual it was.

“What's also helpful: Don't ask what you can do and then forget you asked; follow through. And, oh yes, if you can, give money or cook food or something like that, that means a lot.”

“How come I didn't know about the woman at the pool?”

“I told you. Remember, you started to cry.”

“TWO PEOPLE CANNOT share unhappiness,” De Vries writes in
The Blood of the Lamb.
A second bottle of wine, however, is another matter. Cynthia and I have moved from the dining room table to the living room couch, where it is becoming evident that we will not be exploring our innermost feelings for much longer, certainly not until the sun comes up. It's only ten thirty and we're both yawning. We may have to continue our “rap session” tomorrow and, quite likely, the next day and the day after that until it turns into all it really is, all it ever is—us talking about Jonah.

In the meantime, Jonah is having a ball at my sister's. The report, when we call, is thorough. He went for a swim in the backyard pool, had dinner, then another swim, had dessert, watched the
Madagascar
sequel,
Madagascar: Escape 2 Africa,
and went to bed, though he isn't sleeping yet. I could hear him chattering about something in the background. “Everything is fine,” we're assured. “He's reading his new joke book. Do you know what the chicken said to the duck about crossing the road? Give up? Jonah, here, tell Daddy.”

Jonah's voice on the phone is always a little fragile, suspicious even, like he's never sure what's going to come back at him from the other end of the line. This time though, the punchline is clear. “The chicken said, ‘Don't do it. You won't ever hear the end of it.' Goodbye, daddy.”

He hangs up and Cynthia pats me on the back. “I miss him, too,” she says. “But this is a good break for everyone. We should probably do this more often. Next time, we'll go to a movie.”

“We could even have sex. A movie and sex.”

“Yeah, right! Do you ever get the feeling we drive him as crazy as he drives us?”

We're on Appendix III, now, unless I've lost count. This is Cynthia's advice for parents like us—“Well, people who are just recently learning about their child,” she says. “First, there's what the woman at the Autism Association said to me when I started investigating our options. She said, ‘Do ABA. Do it, even if you have to do it yourself.' I also want to talk about what ABA actually means. I want to make sure people know that it isn't a big mystery. it shouldn't be.

“I mean keep it simple. When your child doesn't understand something, you have to break it down, step by step, into its smallest components, and teach it part by part. Even before we started our home program, I was getting an idea of what I should do from reading about ABA and watching videos. I tried it out by teaching Jonah to count. I bought these toy hippos and he'd count to one and I'd bounce him on the bed or do something else he liked, then we'd count two hippos and do the same thing. Until he understood; until he could ... what ... what is it?”

“I need a Kleenex.”

“You're sweet.”

“Seriously.”

“Also, respond to behaviours in a way that doesn't make them worse. Why are you looking at me? Don't get paranoid. I'm not talking about you ... necessarily.”

“Necessarily?” If I wasn't paranoid before, I am now.

“Like I said, it's simple. For example, if your kid hits somebody so he can get a toy and then he gets the toy, that reinforces bad behaviour.”

“Isn't that obvious?”

“No, it isn't. People respond to behaviours all the time in ways that make them worse. I met a father at a conference once and he was complaining about his child's tantrums. He kept saying, ‘No one can help.' I remember I talked to him afterward. I asked him what he does when his child
isn't
having a tantrum. Because that's the time you can make a difference. Your efforts should be proactive. Play with your child when he's not having a tantrum. Catch them being good, that's what you have to remember. It works for everyone, you know, not just Jonah, not just kids with autism.”

“I'll remember that.”

“It's classic ABA, sweetheart, reinforce the behaviours you want to see.

“The thing is, this isn't a book about ABA. In a way, it's the opposite. It's about bad behaviour and about what it's like to not have anything to rely on, to hold on to.”

“I don't care,” Cynthia says. “Second.”

“Second? That was five things.”

“Second, also do Relationship Development Intervention, or RDI. Which means don't ignore relationships; RDI will help you discover what your role as a parent is. It will also teach your child how to relate to you, first, and then others. In my opinion, there are two great geniuses in terms of treating autism: Lovaas with ABA, and Gutstein with RDI. If you can find a treatment that incorporates the best of both of their programs you're probably on the right track. It's not a coincidence that they have the best critiques of each other. They could team up, of course, but that would make ...”

“Sense?”

“Right, third.”

“Third and, finally ...”

“No, not finally,” Cynthia continues. “Third, the hardest thing for me, even harder than dealing with autism, is dealing with service providers. I don't really have advice. I hope whoever is reading this is better at it than I am. In our experience the service providers, the school, the hospitals, the government agencies, whoever, are not interested in collaborating with parents. It's a hard job advocating for your child. For me, it's been a huge challenge. So get help. Get advocates. Don't expect it to be easy.”

On the subject of unhappiness, De Vries was wrong. It can be shared. In my experience, it is shared every day. It is, in this respect, not very different from happiness.

“Your child might recover and might not; both are possible,” Cynthia says, then pauses, choosing her words carefully. “Jonah didn't recover. He hasn't yet. We don't know what kind of life he is going to have. How can we? Who can know? Anything can happen. But we're still aiming high. Yes,
we.
And don't listen to people who say things can't improve. Okay, now I am looking at you. Don't you think I know what
you're
thinking by now? You think your voice isn't in
my
head.

“You know what you said that time, to Harriet, that you underestimate him? Well, you may think you do. But I see you with Jonah every day; I know that's not what you are doing.”

“Appendix IV?”

“Don't rush me. I have to talk about the gains. Because even though they may be tiny, they go a long way to make everything worthwhile. Jonah is learning Hebrew. We're learning it together. He knows his fractions. He's going into grade six, on his own. Instead of screaming and having a tantrum every morning like he used to, now he's saying—you've heard him—he's saying, ‘Mom, it's seven o'clock.' When we went for a bike ride the other day, he asked me if I was happy He was interested; I really think he was. Last week, we were waiting in the car at a train crossing and it was a very long train. It must have taken ten minutes to go by. And when it finally did he looked at me and said, ‘Thank goodness!' I'd never heard him say something like that, something so ordinary and appropriate. And at that wedding we went to—remember?—he disappeared when we were leaving and I found him saying goodbye to the bride and groom. What now? Are you crying again?”

“Yes, why aren't you?”

She puts her arm around me and kisses me. Meanwhile, I'm thinking rules:
Be proactive. Reinforce behaviours you want to see. Remember to play with him when he's being good.
“Sweetheart, I never expected to be a mother, you know, and now, well, now I am. I mean I wouldn't change anything, not if it meant changing everything, you know. So ...”

“So?”

“That's right, deal with it: lemonade.”

“What about Appendix IV?”

“Too sleepy.”

“You know you've given advice to everyone, except me.”

“Bed, please.”

“Just one line, come on.”

Cynthia stands and pushes the stop button on the tape recorder. “All right, here it is. Be a good sport,” she says, holding out her hand to help me up. “Now will you come to bed already?”

“Yes,” I say. “Yes I will.”

Jonah has a signature move. On the way to the car, he kicks out his right leg, does a stutter step, and then rotates one arm over the other in a kind of tumbling motion. If it's hard to describe accurately, it's even harder to account for. On the one hand, it has the look of being choreographed—like he's a back-up singer for the Temptations. On the other hand, it seems as involuntary as a hiccup. On those rare occasions he gets into the car without doing his move, the lapse will weigh on him to the point where he'll ask me to stop the car. “Please, Daddy,” he'll say. “No way, Jose,” I'll counter. Lately, he's been surprisingly sanguine about my flip reply. He hardly even complains. This is a small sign of maturity but an encouraging one nonetheless. Cynthia and I didn't notice Jonah's move at first, not until we compared notes one day and realized it happened whenever he went somewhere. After that, I started watching for it—trying to figure out what comfort it provided, what meaning it might hold for him. Even for Jonah, it was a strange little stim, though endearing, Cynthia and I agreed. Eventually, I stopped analyzing and simply observed him. Now, it's become hard to think of it as strange or even a stim. It's more like a gesture—Jonah being Jonah.

Of course, some things can't be overlooked. A few weeks into grade six and we're already reminded of that. Jonah is also being Jonah in class, laughing for no reason his teachers or the CCW, the child care worker the school has assigned to him, can make sense of. It doesn't happen all the time, though often enough for him to be a distraction. He's been told, more than once, to stand outside in the hall. We can't help worrying that this has something to do with the fact that he's essentially on his own this year and doesn't have Jessica or someone like her to help him. With Jessica banished, information is spotty, at best. After last year's confrontations, we are not on the best terms with the principal, and so far Jonah's CCW seems to be intent on avoiding us. At the beginning of the year, Cynthia sent her a note asking if they could meet, before or after class to put a face to the name, just say hello. We got a note from the CCW the next day saying she couldn't talk to us. She didn't explain why, though I have a guess. Our reputation as troublemakers precedes us. Now, a meeting is scheduled in a few weeks with the principal and the school board's special-needs consultant to discuss how we can all improve communication and, more to the point, how this very important year got off to a very bad start.

Cynthia believes in talking things out. I believe that will only succeed in making everyone more wary of everyone else and will, in the long run, create more problems than it resolves. This is a reactionary view, I know, but it's not like I don't have the experience to back it up. If there's one thing you learn writing book reviews and having your own books reviewed, it's that the human capacity for holding a grudge and then nursing it is limitless.
You're not getting out of the meeting sweetheart, if that's what this is about.
For now, we have to make do with Jonah's child care worker grudgingly filling out a short checklist we prepared for her—apparently, filling out checklists, like saying hello, is not part of her job description. In the meantime, Jonah can't seem to keep a straight face when we ask him why he's laughing in class.

AFTER DINNER AND HOMEWORK, we experiment with a new family activity. We all sit down to watch the DVDs of Jonah's baby days that my sisters loaned me almost a year ago. The ones I promised myself I'd never watch. Cynthia and Jonah started watching the DVDs over the summer when I was away and Jonah got a kick out of them. Look at it from his viewpoint: what was there to dislike? He was the star, essentially of a twelve-hour (so far) one-man show. What's evident in every frame is how the world revolved around Jonah even then—all our worlds—only it did so with a great deal more effortlessness than it does now. When she first watched the DVDs Cynthia's reaction was ambivalent. She knew what she was supposed to be feeling—straightforward, undiluted nostalgia, the kind of emotional response that naturally accompanies the viewing of old home movies of your baby. Except in this case, it was a feeling complicated by hindsight, by signs she might have missed, signs she couldn't help looking for now.

“And what have you noticed?” I asked before agreeing to take part in this latest screening.

“You had more hair and you were happy. A winning combination: want to see?”

So with our eleven-year-old son between us, in constant squirm mode, we learn an important lesson: the past is not a thing of the past. My hairline aside, not as much has changed as you'd think. So while my sisters, who did most of the taping, add a running commentary of adoring baby talk, I come in and out of view, mostly to kibitz with the kid and make a nuisance of myself. Here I am playing peek-a-boo. Here I am making funny faces. Here I am impersonating Winston Churchill giving his famous “We shall never surrender” speech—on the premise that all babies look like the late British prime minister.

I wasn't wrong about Jonah being cute, though he's not quite as faultlessly cute as I remember. He's no Gerber's baby. In some early shots, his skin is blotchy and he's sporting what looks like a comb-over. His scalp was, I'm also reminded, ravaged early by eczema or what the
What to Expect
books called cradle cap. I remember we had to put olive oil on his head every day for months. He was as slippery as a seal and smelled like a chef's salad. Sometimes, he looks jowly—yes, like Churchill—and sometimes gassy, whether he's three months or thirty months. “Women, unlike men, actually notice things,” the novelist Richard Russo said, and no doubt, he's right. But if there were lights blinking A-U-T-I-S-M back then, if that's what we were looking for, I swear I can't see it. Instead, what I can't help noticing is a kind of continuity, an unbroken, if not always straight, line between Jonah then and now. If I want a glimpse of a kooky, charming kid I can look at the television screen or at the guy sitting next to me.

JONAH IS STARTING OFF this year the way last year left off, resisting his Read and Respond homework. This time, though, I'm deliberately giving him reason to resist. I've upped the ante and given away our Joy Berry collection of self-help literature. We are going to read a real story instead, a chapter book. On Cynthia's advice, we're going to go slow, no more than two pages at a time, but we're going to stick with it, and, if we do, we should be through the whole thing in a month or so. I've chosen
The Three Musketeers,
the copy I bought before he was born, and since rescued from one of those piles of garage sale junk in the basement.

This abridged version—decimated from some seven hundred pages to barely seventy—is relatively undemanding. Even so, Jonah is having a hard time following the narrative, locating the main idea in a scene, distinguishing between characters. He's not much for swashbuckling, it turns out; or chapter books. There are lots of illustrations, but even so the pages are a bit longer and denser than he's used to. The same goes for the story. When I sense his frustration growing, we take a break and act out a sword-fighting scene. Jonah grabs a plastic baseball bat and I grab an umbrella and we have at it on the trampoline, cursing at each other in fake French. He's d'Artagnan; I'm Cardinal Richelieu. Cynthia overhears the commotion and comes running, relieved to see we're not actually fighting. She disappears before we can enlist her in the battle. She has work to do; she's researching high school open houses.

“A father is a man who fails every day,” Michael Chabon says in
Manhood for Amateurs.
I can only assume his point is, so what? When Jonah and I sit down at the dining room table again, I read one paragraph of
The Three Musketeers
and wait, as patiently as I can, for him to read it over. I've also started encouraging him to take notes, so we stop frequently. Getting through a page this way can take twenty minutes or more. Still, even condensed and slowed down to a crawl, Alexandre Dumass nineteenth-century tale of seventeenth-century derring-do has some juice to it. It's a story with unrepentant villains and obvious good guys, but even so the good guys, the Musketeers, are flawed. In fact, at the point at which we meet them, you could convincingly argue that they're deadbeats. And while they rise to the occasion, it's not before they've done their share of complaining. They're brave and witty, but also cynical, vindictive, and dissolute. This is apparent, even in a seventy-page adaptation for pre-teens. Dumas's novel was intended to be all about honour, but it ends up being about something else entirely, something smaller but more intimate like fidelity. Like most writers, Dumas didn't have a clue what his story was really about until he got around to telling it.

“And what do they say?” Jonah interrupts, writing a note to himself.

“Tell me. Go ahead. Look.” I point to the page, but it's likely I'm over-prompting. He doesn't have to reread it. He remembers the Musketeers' famous unifying motto and says it out loud. “Again,” I say, and we shout it together this time, as we wait for his mother to overhear and drop what she's doing.

THE SCHOOL BELL RINGS and I wait for Jonah in the car. A girl from his class who appears, from a distance, to be a pint-sized Oprah gets him in a walking bear hug—she's twice his size—and I watch him try, without success, to wriggle free. On Jonah's checklist the other day his child care worker made a reference to a girl, likely this one, and Jonah behaving “inappropriately” between classes. it seems the two were caught kissing. When I asked Jonah where she had kissed him, he said in the schoolyard.
Good enough.
I admit I probably would have teased Jonah about this if he were a different child. But Jonah, so far, has proven difficult to tease. He either gets mad or is completely unaffected. There's no middle ground. I suppose, with a different kid, I also would have had to resist the clichéd urge to take some obligatory paternal pride in this accomplishment. But with Jonah, a simple playground kiss was, instead, a new and more complicated cause for worry. There was still so much he had to learn, so much he was vulnerable to, so much ... okay, who am I kidding? I couldn't be prouder.

Puberty was scary and incomprehensible enough when I went through it, but I can't imagine what it will be like for Jonah. I'd better start, though, because, like it or not, it's here. Last year, Jonah came home from school with a free sample of deodorant in his backpack. This year he's being encouraged to use it. Jonah's homeroom teacher has bluntly suggested to parents they make sure their children bathe regularly and change their clothes. There is, apparently, an odour that hits a peak when kids turn eleven and twelve; in particular, when twenty of them are stuck together for hours in a stuffy classroom. The teachers call it Eau de Sixth Grade.

Jonah is finally free of his, what—girlfriend? stalker?—and he spots me and hops into the backseat. I'm hoping he'll say something about what just happened but he's more interested in where we are having supper. I ignore the question and make up a story about the countless girls who used to hug me all the time when I was his age, but he still doesn't bite. Having had no success at finding out where we'll be eating, he now wants to know what we'll be eating. I start the car and, again, change the subject. I shout, “Shotgun!” Jonah scrambles into the front passenger seat. He's big enough to sit beside me now, and I encourage him to. It makes it easier for us to carry on something closer to a conversation. In fact, Cynthia and I have both noticed he's revealing more about what's happening at school than usual. Not that he's telling us anything useful, anything that will make his homework easier to complete or that will assist us in helping him cope with whatever stresses or pressures he may be feeling. Mostly, it's gossip. Grade six is part
Lord of the Flies,
part reality TV. We have pieced together enough information to know that Stephanie has a crush on James, that Tommy is in trouble for burping in the faces of classmates, and Terrell is relentless in teasing Tyler about his love life. As Jonah explains, “Terrell sings, ‘Tyler has a girlfriend; that he'll never see again.

This is the good stuff, the reason I like having Jonah beside me in the car. But before we head home I am compelled to at least look through Jonah's backpack to see how much homework he has and what the child care worker has deigned to tell us about his academic day. The news, according to his school agenda, isn't uplifting.

“There seems to be little support in reality for the popular belief that we are mellowed by suffering,” Peter De Vries once wrote. “Happiness mellows us, not troubles.” If you'd asked me just a year ago if I agreed with this statement, I've no doubt I would have said yes and had good reason to. Ask me now and I'd also say yes.
Be serious, sweetheart.
All right, it has occurred to me this past year that happiness and trouble aren't quite as inseparable as I once thought. What can I say? I have no clue. Which is, coincidentally,
my
signature move.

Jonah is watching me intently as I read the teacher's note in his agenda. I do my best to keep my expression neutral and wait as patiently as I can for him to speak first. He wants to put on “That's Life,” but I shake my head and turn off the car engine. Eventually, my old interviewing tactic works. He speaks first and says more than he intends to.

“I laughed today ... in school.”

“And?”

“I had to stand in the hall outside the class. The teacher said I will have to go see the principal next time.”

“And do you want to stand outside? Do you want to go to the principal's office? No? So why do you do it Jonah?”

“My French teacher's name is Miss Melanie and I find it funny to say Miss Shmelanie.”

“Jonah?”

“I laugh because it has a
shm
in it for Shmelanie. I have to go out in the hall because I find the
shm
funny.” Proving the point, he cracks up, and so, eventually, do I. That's because he's right. It is funny, for the reason he says and, who knows, for a whole lot of other reasons we have yet to figure out.