The Boy In The Moon Part 2

Yes, we've tried feeding him by mouth.

Chloral hydrate. Yes, by prescription.

It's not his ears. I know it's not his ears because I was here yesterday about his ears, and it's not his ears, he doesn't cry like this if it's just his ears.

Yes, Doctor, I waited. I waited for five days, with him screaming all the time, before I even thought of bringing him here.

All those stuffed animals in the hospital store in the lobby of the brilliant children's hospital in the middle of the downtown of the brilliant genius city! And yet the place was filled with doctors who couldn't help my boy. I developed a degree of skepticism toward the medical profession that tended to show itself after the fourth doctor in a row told me something I already knew. Sometimes they saw my skepticism and agreed with it, quietly admitting their own helplessness, which made me like them again. Sometimes they spotted my frustration, and stayed away.

I learned an almost geological patience. I knew the hospital like I knew my own bas.e.m.e.nt, all the tricks of the place: the most convenient end of the parking garage (the second level, before the first was even full, near the north elevator), where to validate parking, the best time to line up for the best coffee (before 7:45 in the morning, or after 11), how to work the prescription counter in the pharmacy to minimize the wait. I knew how to find Physio and MRI and Dentistry from memory. I knew what I would see roaming the floors of the place-the children themselves, with their strange afflictions, heads the size of watermelons with bright red newly st.i.tched surgical gashes running from ear to ear, braces and casts, greyish-yellow skin, the resigned eyes, a resignation deeper and more profound than any adult's could ever be.

I knew what to do in response. I knew to smile. Smile for every one of them. Nothing too obvious; I knew what it was like to have someone pander to Walker, I didn't want that special treatment. But an openness, a lack of hostility and fear nonetheless, that was the trick. It was a form of meditation. But always I was looking, and silently asking: what happened there?

In some ways, for all the tension, Emergency was easy-because there was an ease to the department as well, a straightforward, fact-based calm devoid of worry. Here in Emerg, worry is beside the point: you're in the maw of it now, it's as bad as it gets, you have to get through it. I knew doctors who admitted privately to the secret appeal of emergency medicine: they were too busy to contemplate the sadness of it all. Their work profoundly unreflective, liberating in its mindlessness.

You can sit and wait in that calm for a long time as a parent, without minding. You look around. The technology, everywhere, on carts, an entire science on wheels, but also replicated at the bedhead in room after room, the same clean new tubes and bottles and valves over and over again, because of course our individual weaknesses are the same. Countless heavy-gauge yellow plastic waste-collection bags, for toxic bloods and spent dispensers, an entire industry (safe disposal!), money to be made from the garbage of the trauma of the body. The smells: antiseptic, coffee, puke, m.u.f.fins, fresh linen, s.h.i.+t, worry, fear, grief. The last the worst: a dry smell, like stale ground, like hot pavement. And hand-was.h.i.+ng, again and again, the splurt of the sanitizer, the Saran-Wrappy sound of a pair of hands spreading goo over themselves, the holy ritual of precaution. Choirs of crying. Clacking gurneys. Ambulance drivers making light banter with victims. Curtains hiding unknowable despair. The questions: Is it curable? Can they see my fear? And the inevitable comparison: Is my child better off than that child?

Through it all, you hold your child's body, hold its flesh and heat close to you, like a skin of fire, because you need to hang on to what life there is. The need to eat drives us, s.e.x makes us shameless, but touch is our truest hunger. Just hang on. Just hang on. Just hang on. Just hang on.

And gradually, without you noticing it, something changes, and you don't have to hang on quite so tightly any more, or else there is nothing left to hang on to. The crisis pa.s.ses or resolves. All of it incommunicable and yet, much later, impossible not to talk about ad nauseam.

If you're lucky they let you both go. The most liberating sensation of all, when you finally leave the hospital again in the early morning, before the sun is entirely up, the sidewalk still damp from the dew, your child safe again, for now. The way the world seems to start over. By the time you find your car-level two, near the north elevator-you're making plans again.

Throughout these years, on half-sleep, my wife and I fought a lot. Like most CFC parents, we argued more about sleep than about anything else: who had been able to sleep when and who hadn't, who deserved to sleep in and who didn't. It's mostly the same argument. It goes like this: in the middle of the night, though it's Johanna's turn with Walker-and it could easily be the other way around-I can't sleep and head downstairs to the living room to read. Five minutes in, I hear Johanna: "No, Walker, no!" A minute later, she appears at the foot of the stairs-naked, her skin still lightly tan (even in January), exhausted. Walker has been up for three hours and has just head-b.u.t.ted her and erupted with laughter. "Can you take him?"

I sigh (a mistake) and say (another mistake), "I had him last night for three hours straight in the middle of the night."

"Forget it." She stalks off. "Never mind! Sorry I asked!"

I follow her upstairs, recanting.

I pa.s.s her and get to Walker's room first and lie down with him. By now my poor wife is so tired she refuses to let go. She shouts, I shout, I close the door. She comes in again, so I nudge her out, close the door again and bar it with my foot. I'm not exactly rational. When I open the door again, I can hear Hayley, in our bedroom (the endless game of musical beds, to accommodate the boy), asking what's happening. I begin to apologize profusely to her mother. It's not entirely sincere, but sometimes in these volatile battles it does the trick.

But there are other times too-moments of unstoppable pleasure. The four of us in bed together on a Sat.u.r.day morning, Walker on his knees, towering for once over us all. This is something, you see: every time he is happy, he is as happy as he has ever been. Hayley, a delicate and skilled ballet dancer, twisting with Walker to music on the stereo, Walker on the moon with joy. Minutes from his life. Everyday occurrences for a normal child. But I know their true value.

Shortly before Walker turned two, we heard about a CFC study being conducted at the famous Children's Hospital of Philadelphia. We drove ten hours to get there. At the end of a day of examinations we finally met a doctor who told us something we didn't know. His name was Dr. Paul w.a.n.g, and he was a developmental pediatrician.

w.a.n.g conducted a series of tests. He was a slim man with a high forehead and a quiet voice. He showed Walker some line drawings, a light, a puzzle; Walker threw them on the floor. After an hour, the doctor was done. Walker wandered over and climbed into my lap.

"As you know," w.a.n.g said, "there are three general levels of cognitive delay, or r.e.t.a.r.dation-mild, moderate, and severe, sometimes called profound."

"Which one is Walker?" Johanna asked.

"If Walker continues at his present rate of development, then he might be diagnosed with moderate mental r.e.t.a.r.dation as an adult."

"Moderate?" Johanna said, and put her hand to her mouth. She was already crying. (I hope I held her other hand.) "I was hoping for mild. Will he ever be able to read? Or ... drive a car?"

"I doubt it." This was bad news. Moderate r.e.t.a.r.dation is still catastrophic, and there was nothing to say it wouldn't get worse as he got older. He would need lifelong super vision, support in his living arrangements. "At this point, little definitive information is known about children with the CFC syndrome." The doctor judged Walker's overall development to be at the ten-month level. Ten months. Less than half his age. "As he gets older, of course, the differences will become more noticeable."

w.a.n.g turned to me. "Do you have any questions?"

"Just one. We rented a cottage this summer for the first time, north of Toronto. It's a very remote place, very quiet. An island, no one around but us. Walker seems to love it. It changes him, calms him. It means a lot to me, that place, and how it changes him. Will I ever be able to explain all that to him?"

w.a.n.g shook his head. "Not rationally, probably not. But"-he stopped, thought-"it sounds like he already understands it." Another pause. "The Buddhists say the way to enlightenment, to pure being, is by getting your mind out of the way. I'm not trying to be trite, but Walker already knows how to do that. He is pure being. He may be developmentally delayed, or moderately r.e.t.a.r.ded, but in that way, he's already miles ahead of most of us."

That was the first time someone suggested Walker had a gift the rest of us didn't.

Gradually, as the endless routine of caring for him and watching him and stopping him and stimulating him became familiar, my fear subsided, and my grief was transformed into an unusual loneliness. Life with him and life without him: both were unthinkable.

As much as I tried to consider alternatives, I couldn't imagine not caring for him every day: couldn't imagine a day without the morning wake-up, the cleanup, the dressing, the school, the return home, the tired wailing, the sudden change and the bursts of sunny happiness, the feeding, the pointless teaching, the hilarity, the hospitals and doctors, the steady worry, the night rambles, all repeated every day until it ended, however that happened. There was nowhere we could afford to put him, and there was nowhere to put him anyway.

Our friends offered to take him, to give us a weekend away. We did that twice in twelve years. Each time it was a different couple, our closest friends, a single night each time. They volunteered many times before we agreed: caring for Walker was a complicated thing to ask someone to do, after all, what with all the tubes and feedings and drugs, and the incessant hitting and crying. They wore one look on their faces when I dropped him off-attentive, but eager-and another thirty-six hours later when I picked him up, the look of someone who has just had 150 house-guests for the weekend, during which the entire plumbing system has exploded. I saw the same stunned gaze a few weeks ago on the pa.s.sengers of a plane that crash-landed safely and miraculously on the Hudson River. Those were the looks our friends had after a weekend with Walker. I understand completely. But I will always be loyal to them because they tried-they tried to reach down into our darkness and hold us. I cannot tell you how deep that well felt, how far down they had to reach. I never asked them again. It was, as I always said to Johanna, too much to ask.

"I wish people we know offered to take him more," she said one night.

We were talking in bed, one of the rare nights Walker fell straight to sleep. Lying next to each other in the darkness was so rare by then, it felt exciting again. I could feel her warm skin against mine, thrilled by the relative novelty of a grown-up at my side. The room was so dark we couldn't even see one another, but we spoke into the black night anyway. A small act of faith, and someone to listen.

"I mean, no one in my family or your family has ever offered to take him for a single night. My mom, once. That's it." I was shocked, not just by the truth of what she said, but by the very audacity of what she was suggesting. Asking someone to take Walker! Who the h.e.l.l did she think she was! My parents were in their eighties, and they were afraid of Walker, afraid they wouldn't know what to do. My sisters lived in distant cities. My brother, who lived in Boston, and his partner, Frank, offered, but I couldn't bring myself to impose on them: they had no children, their house was too perfect to wreck. My wife's sister was single and lived in Los Angeles; we had no family living nearby, and no extensive community in the city. It wasn't just too much to ask, it was too much to imagine.

"Our closest friends have taken Walker into their lives as if he were one of their own kids," I said. "All those weeks at cottages, dinners at their homes. They didn't have to do that."

"But one night? I would have done more than that for them."

"But you know what it's like to do it. You have a kid like Walker. They don't. Most people are terrified."

Speaking the words into the black night, our bodies touching, remembering luck and good fortune.

It was too much to ask.

At dinner parties, we ate in s.h.i.+fts, one of us eating, the other wandering hand in hand with Walker, to keep him calm. If he got carried away and stroppy, if he began to whack his head uncontrollably, I sat him on my shoulders or strapped him into his stroller and took him outside: we'd leave and come back twenty minutes later. If I caught a whiff of a diaper, I whisked him away. We insisted on maintaining ordinary routines and customs. "He's fine," friends said to me when they invited us over for dinner or drinks, but I knew his buzz-saw scream and I didn't want to be responsible for other people hearing it; I didn't want them not to invite us any more, because they were all we had. In those days I still thought Walker was a reflection of me, I didn't think of him as a separate being. When he was calm Walker made his way from guest to guest, crawling into their laps, playing with their watches and their bangles, drooling onto their pants and s.h.i.+rts. He was a steady reminder not just of his presence, but of the existence of all children like him, the children we so often try to forget. For this reason we tended to select our dinner guests carefully. If he attached himself to someone, I intervened: "Here, I'll take him." Many objected and told me to go away; many did not. You could see the reserve in the eyes of the latter, in their posture: they kept talking, but they didn't resist giving him up. Who could blame them?

Johanna was better that way: she let other people look after him, wander with him, sit with him. She seemed to feel it was his, her, our due, whereas I literally leapt to take him off their hands. I didn't want anyone to reject him, so I tried to take rejection out of the picture from the start. He felt like my boy that way. I was not going to let anyone hurt him, he had been hurt enough, and so I would wrap his guilelessness in my constant presence to protect him against everything, even rejection. We were in it together, he and I, it didn't matter about the others. You could hammer away at me, but you'd never get through to him. Like taking a beating: bury yourself, hunker down, survive until the blows stop raining. It was the least I could do as his father, and at least I did that.

That was why we took him with us, on planes and in the car. In the car was easier: Hayley and Olga and Walker in the back seat, Johanna and I in the front, and everything we needed divided into two loads, the stuff we could pack away in the wayback (that was what we called it) and the detritus we had to have close at hand, for Walker. The at-hand pile comprised the stroller, at least one jumbo pack of thirty-six diapers, a box or two of formula, a small Coleman cooler of medicines, two changes of clothes and bibs and neckerchiefs in a carryall (because he drooled and puked) for the trip itself, a bag of toys and distractions-and that was, as I say, not counting suitcases and his folding playpen/bed. If we were in the car we could take more, of course, adding a second hamper of toys and his plastic "jumper," a purple and green and yellow plastic rolling contraption with a fabric seat suspended in the middle, in which he could sit and propel himself across the room. He loved that G.o.dd.a.m.n thing. "Do you like to jump-jump-jump?" Johanna would ask, and he would grin and jump, jump, jump.

We flew with him, too, but to do so was truly hairy, a form of extreme travel we undertook only to see Joanne and Jake, Johanna's mother and stepfather, in Pennsylvania for Christmas (we set the playpen up between the twin beds in the overheated guest room, the windows open wide even in winter, and tended to him together at nights, trying to shush him so the others wouldn't wake); to Florida to visit Walt Disney World. (Jake, a devout Catholic, bought indulgences in Walker's name and prayed to Padre Pio, a local candidate for sainthood.) We never knew if Walker's ears would react and make him cry the whole way, or if being confined in the plane would drive him (and us) crazy, or if he would instead just sleep or lie in his seat and gaze out the window at the clouds, a smile pasted across his face. We never knew.

In a pinch we tried babysitters. When Olga was away or unavailable, on New Year's Eve and the big holidays, we hired a sitter from respite agencies that specialized in looking after disabled children. They were first-rate caregivers, mostly unflappable, but until you met them or knew who you were getting, it felt a bit like dropping your kid off with a hired invertebrate. I mean, who is available to babysit on New Year's Eve? Several were on the eccentric side. A pathologically shy, limping giantess stranger would arrive at the door, and I would pretend that it was the most normal thing in the world to hand over my disabled son (and often my daughter) to a stranger for six hours. "Ah, h.e.l.lo, One-Eye. How are you, nice to see you, come on in, I'm Ian."

A terrified eep eep from One-Eye would be the only acknowledgement. from One-Eye would be the only acknowledgement.

"And this ... is Walker! Can you say hi, Walker?" Of course I knew he couldn't say hi, but what was I supposed to say? Here, you two seem well matched Here, you two seem well matched. Instead I said the only thing I could say: "Let me show you his room."

There would then follow our standard explanation of the Walker routine. Here is his food, his clothes, his diapers, his changing room, his room, his playroom, his bed. Then the routine itself: he gets this syringe at this time, and 4 cc's of this at that time, and then two cans of formula every four hours, which you administer like this, attaching this bit here to that bit there and this gizmo into that nozzle-et cetera.

"Hayley knows what to do," we said, pointing to our lovely four-year-old daughter. It was a little like trying to explain the plumbing of a large complicated house in five minutes before you flew out the door. Because of course we also wanted wanted to fly out the door. to fly out the door.

But that was when One-Eye would unpack her ... bag. Bag? The One-Eyes always carried a carpet bag of contraptions. Puffers and inhalers (their own); bottle of hand cream; snacks (including in one instance an entire loaf of bread; "What's she going to do?" Joahnna said, after we left. "Have a picnic?"). One woman-she came back several times-found the stairs too much to handle, and we returned after midnight to find her camped out in the living room, Walker alive and well and, always, wide awake. Hayley developed favourites-the woman from the Maritimes who told funny stories about growing up in the country-and others, such as the woman who insisted that Hayley give her all the red sour worms in a bag of candy, and that they be transported to her fingers, one by one. We lived in a world of our own, an underworld of Walker's making.

six.

But let me ask you this: is what we've been through so different from what any parent goes through? Even if your child is as normal as a bright day, was our life so far from your own experience? More intensive, perhaps; more extreme more often, yes. But was it really different in kind?

We weren't disability m.a.s.o.c.h.i.s.ts. I met those people too, the parents of disabled children who seemed to relish their hards.h.i.+p and the opportunity to make everyone else feel guilty and privileged. I disliked them, hated their sense of angry ent.i.tlement, their relentless self-pity masquerading as bravery and compa.s.sion, their inability to move on, to ask for help. They wanted the world to conform to their circ.u.mstances, whereas-as much as I could have put words to it-I simply wanted the rest of the world to admit (a minor request!) that our lives, Walker's and Hayley's and my wife's and mine, weren't any different from anyone else's, except in degree of concentration. I realize I was delusional. People often said, "How do you do it? How are you still capable of laughing, when you have a son like that?" And the answer was simple: it was harder than anyone imagined, but more satisfying and rewarding as well. What they didn't say was: why do you keep him at home with you? Wasn't there someplace where a child like Walker could be taken care of? Where two parents wouldn't carry the whole load, and could have a moment or two to work and live and remember who they were and who they could be?

I asked myself those questions too. I knew Walker would have to live in an a.s.sisted living environment eventually, but that was surely years away. I approached the subject casually, even at home. "We should put him on the waiting list for a long-term place," I'd say, off-handedly over breakfast. I tended to think about the problem in bed at night.

"Oh," Johanna invariably replied, "I'm not ready for that."

"No, no, not now," I would say. "Later."

Just as Walker turned two, he began to grab his ears and bite himself. He didn't stop for a year and a half. We thought he had a toothache, an earache. He did not. Self-mutilating Self-mutilating appears for the first time in his medical chart in March 1999, shortly before his third birthday. He quickly graduated to punching himself in the head. He put his body behind the punches, the way a good boxer does. Hayley called it "bonking," so we did too. appears for the first time in his medical chart in March 1999, shortly before his third birthday. He quickly graduated to punching himself in the head. He put his body behind the punches, the way a good boxer does. Hayley called it "bonking," so we did too.

The irony was that he had been making progress, of sorts: finer pincer movements with his fingers, a little eating. (He loved ice cream. If you could get him to swallow it, ice cream made him smile and scowl-from the cold-at the same time.) He could track objects and wave goodbye, and often babbled like a madman.

Then he flipped into blackness.

Was it self-hatred? I wondered about that. We enrolled him in a famous rehabilitation clinic, the Bloorview MacMillan Children's Centre (now Bloorview Kids Rehab) in north Toronto, where he was seen by a behavioural therapist. Everywhere else when people saw his bruises they wondered what we were doing to our child. Cannot communicate Cannot communicate, Dr. Saunders noted.

Sometimes Walker was in agony as he smacked himself and screamed with pain. At other times he seemed to do it more expressively, as a way to clear his head, or to let us know he would be saying something if he could talk. Sometimes-and this was unbearably sad-he laughed immediately afterwards. He couldn't tell us anything, and we had to imagine everything. More specialists crowded into our lives. Walker was diagnosed as functionally autistic-not clinically autistic, but he behaves as if he is-as well as having CFC. Dr. Saunders tried Prozac, Celexa, risperidone (an antipsychotic designed for schizophrenia, it has been known to allay obsessive-compulsive behaviour in children). Nothing worked. Once, in Pennsylvania, he bit his hand to the bone and, after an hour of surgery to repair the damage, spent a night in hospital. (The bill was $14,000.) Dr. Saunders' notes began to track longer and longer stretches of horror. "Bonking" ears 23 days "Bonking" ears 23 days. I remember that morning, especially the grief-stricken look on Walker's face as he bashed himself. He looked straight at me. He knew it was bad and wrong, he knew he was hurting himself, he wanted to stop it and couldn't-why couldn't I? His normally thin gruel of a wail became frightening and loud. From June 2001 to the spring of 2003, every entry in his medical records mentions his unhappiness, his irritability.

Did he know his window for learning was closing? Was his vision dimming? 72 hours aggressive behaviour. Unhappy crying 5 days 72 hours aggressive behaviour. Unhappy crying 5 days. Even Dr. Saunders' handwriting became loose and scrawled, distracted by the chaos of those shrieking visits. Screaming all day, needs to be held Screaming all day, needs to be held.

I dreaded the doctor's waiting room, with its well-dressed mothers and well-behaved children. They were never anything but kind, but walking in with Walker yowling and banging his head, I felt like I'd barged into a church as a naked one-man band with a Roman candle up my a.s.s and singing "Yes! We Have No Bananas."

Mother tearful, Dr. Saunders noted on December 29 of that awful year. Urgent admission for respite Urgent admission for respite.

I remember that day too. We drove Walker home from the doctor, fed Walker, bathed Walker, soothed Walker, put Walker to bed. I heard his cries subside in stages. Normally Johanna was relieved when he dropped off to sleep, but that night she came downstairs from his bedroom sobbing, her arms wrapped around herself.

"He's gone away," she said. "My little boy has gone. Where has he gone?" She was inconsolable.

So perhaps you can understand why, the very next morning, I began to look in earnest for a way out. I didn't tell Johanna, but I had to find a place for Walker to live, somewhere outside our home. I didn't realize it would take seven years, that it would be the most painful thing I have ever done and that the pain would never go away.

On my desk at work is a picture of Hayley reading to Walker. This was up north, on the quiet island. They are lying side by side on a bed, and Walker is looking up at the book in Hayley's hands, as if riveted by every word. I don't know if he understands a syllable. But he can hear her voice, is thrilled to be with her and clearly grasps his smart big sister's affection. He has become the moment and it has become him, because he has nothing else to be. Walker is an experiment in human life lived in the rare atmosphere of the continuous present. Very few can survive there.

The photograph reminds me of a poem I once read in a magazine, by Mary Jo Salter: None of us remembers these, the days When pa.s.sing strangers adored us at first sight Just for living, or for rolling down the street.

Praised all our given names, begged us to smile.

You, too, in a little while, my darling, Will have lost all this, asked for a kiss will give one, And learn how love dooms one to earn love Once we can speak of it.

My boy Walker has no worries there. He never asks, yet is loved by many. But I doubt it feels effortless to him.

"I hear parents of other handicapped kids saying all the time, 'I wouldn't change my child,'" Johanna said one night as we were lying in bed, talking as we fell asleep. "They say, 'I wouldn't trade him for anything.' But I would. I would trade Walker, if I could push a b.u.t.ton, for the most ordinary kid who got Cs in school. I would trade him in an instant. I wouldn't trade him for my sake, for our sake. But I would trade for his sake. I think Walker has a very, very hard life."

seven.

For seven years we talked about Walker moving away to a home for the disabled. Or, to be more accurate: for seven years I tentatively raised the subject of Walker moving into a home, and neither of us could face the possibility. We had to do it, but we couldn't do it.

The dilemma reminded me of an experiment I once read about. Rats were placed in a Skinner box. The floor of the box was then electrified, and the only way the rat could escape the shock was by jumping onto an elevated platform. Unfortunately, any rat that used the platform was punished with a sharp blast of super-cooled air directly into its a.n.u.s-an experience of which rats are not fond, apparently. Rats subjected to this inescapable dilemma quickly began to display cla.s.sic schizophrenic behaviour. I knew how the rats felt.

By the time Walker was nine, he was pus.h.i.+ng sixty-five pounds, and getting bigger, as we were getting older. I was fifty; Johanna was forty-one; Hayley was suddenly a teenager. Carrying Walker upstairs was like hauling a canvas bag of iron pellets, all the weight in the bottom of the sack. Three hours of sleep a night for four nights running was beginning to have an effect: visual migraines became a new feature of my life. How long could we keep it up? Despair seemed to come in cycles, especially when Walker's health was compromised.

I kept my ears open for news of stable group homes and reliable a.s.sisted living centres for the intellectually disabled-but every time I pursued a lead, it disappeared behind an excuse: no room, no funding, wrong for little boys. One famous community for the intellectually disabled to the north of the city had a waiting list of twenty years and didn't accept children. I joined the local a.s.sociation for community living, hoping somehow to ingratiate myself with the organizers and find early leads; instead, the organizers informed me that the average applicant for a spot in the city's network of communal homes was a forty-year-old with Down syndrome and aging parents who were themselves increasingly in need of communal living arrangements. I came away from that conversation thinking that the future was a long way off. No wonder we wanted to keep Walker with us: the scene beyond the walls of our own home, in the world of public housing for the profoundly disabled, sounded like a novel by Zola.

We had lived with this dispiriting state of affairs in the background for years. Back when Walker was two, in the dark days when he began hitting himself, a friend with a disabled daughter of his own introduced me to a man I was told would solve my problems. He worked as an advocate for the handicapped. I'd heard of such people: they were almost legendary creatures, spoken of but rarely seen. An advocate was a kind of personal manager and agent-someone who took on specific cases (but by no means any case) and ran interference for that soul in the vast, complicated special-needs bureaucracy. The advocate helped families figure out what they needed, organized an appropriate plan of attack on the bureaucracy, then lobbied for care and support and money. Advocates tended to work on salary for social service agencies, usually non-profit organizations financed by charities and government grants.

Before I met the advocate, I had imagined there was one public government system through which every case of disability pa.s.sed. I couldn't have been more wrong. "It's every man for himself," the advocate told me. He was in his thirties, and was wearing a suit and tie. "What you get, someone else doesn't get." He told me of children who had been negotiated into group homes, and others who had their own apartments and $1 million a year to pay for support staff: it depended on how one asked, who one asked, how one haggled. "But Walker has a lot of needs, so that's good," he said.

The trick was to hold out until you got the deal you wanted, because if you took too little from the government, it was hard to go back and get more. On the other hand, if your child was offered a placement in a decent home and you turned it down, you went back to the bottom of the waiting list. The net result of this negotiating was an uneven, secretive, unpredictable game that rendered the parents of a disabled child at once anxious and grasping, as well as pathetically grateful for anything they were eventually awarded. New and ever more exotic strains of guilt began to a.s.sail me. If Walker lived full-time in a good group setting, the cost would run at least $200,000 a year. If he lived to the age of fifty, the total would be $8 million. I didn't have $8 million dollars, but there were eight million people in Ontario, the Canadian province where I lived. Was Walker worth a dollar a person? Such calculations filled my head at night.

The advocate knew every play in the social services book. By the end of the hour and a half we spent together, I was convinced he was a genius, and said so. "I'd like you to represent Walker, if you can and would and have room for one more client," I said, practically tugging my forelock.

"I'd love to," he said. "He needs an advocate. There's just one thing: I'm getting out of the advocacy business, and going to work for the ministry." It felt as if the walls of the room had suddenly fallen down. A new Conservative government had taken power, and the province's social service agencies figured they needed one of their own deep in the funding apparatus. Nearly ten years pa.s.sed before I met someone else like him.

From an entry in my notebook:

November 25, 2003 A call from Walker's school. "We're at some kind of crisis point," Alanna Grossman, the princ.i.p.al, says. He's gone from biting himself to punching his head, in addition to his regular circus of tics and antics.

We meet at the school at 9 a.m. Present are Grossman; Walker's two young teachers, Thomas and Dean; a psychologist from the school board, a strict, punctilious woman in a tartan bib dress; two educational a.s.sistants; me; and Johanna, still fresh from the morning battle of waking and cleaning and dressing and soothing and feeding Walker, and thus having had no time to change out of her pyjamas, which she's wearing under her overcoat. An army, to care for a boy. "He needs stimulation," the psychologist says, by way of explaining why he hits himself. How she knows this I have no idea. "We want his. .h.i.tting to be more of a choice." and feeding Walker, and thus having had no time to change out of her pyjamas, which she's wearing under her overcoat. An army, to care for a boy. "He needs stimulation," the psychologist says, by way of explaining why he hits himself. How she knows this I have no idea. "We want his. .h.i.tting to be more of a choice."

These people all meet about Walker once a week. He's endangering himself eight days out of ten. "He can follow routine, but gets upset if it's imposed on him," Dean says. "Sometimes being firm works."

"But at the same time we want him to choose," the psychologist interjects.

I want her to choose another profession.

"I refuse to believe this is his personality," Johanna says. "And that's why I'm so frustrated at not being able to create a communication system for him."

Tartan-Bib: "Is he too dependent on holding?"

This is what I think is going on: Walker wants to be rea.s.sured that he's a human being. He hates how strange and different he is. Now the psychologist wants to deny me the only way I can tell him he's not.