Cause and Effect
Fetal alcohol syndrome is preventable, incurable, and surprisingly common. Still, it brought me Boop, who has redefined my life
It was one of those life-changing phone calls, only not the kind announcing you’ve won a lottery or been nominated for some big-deal award. The woman on the other end of the phone was a Children’s Aid worker in a community just north of Toronto. “Ms. Cunningham? I’m calling about your grandson, Andrew. Come and get him, or we’re taking him into care. Meet me at the hospital.”
I had the forty-five-minute drive to imagine what exactly had transpired. Andrew’s mom, my twenty-six-year-old stepdaughter, had been an alcoholic since her early teens, so I guessed booze was going to figure into the narrative in some way. Alas, I was right. Kira, nine months pregnant with child number five, had been found, again, wui—wandering under the influence—accompanied by number four, Andrew, and the two of them had been scooped by the police. She was still very slurry by the time I got there, and far from capable of reining in sixteen-month-old Andrew, who was busily toddling around the emergency ward, grabbing anything solid to whack on the walls.
Getting home meant a fifteen-minute ferry ride to Toronto Island—long enough for a significant portion of my 600 or so neighbours to note the novelty of my having a tot in tow. My husband, who’d left for a month’s work in Banff literally days before, was among the last to get the news. “Guess who’s come to stay? ” I blurted. “Boop.” (Boop, and even sillier variations, was our pet name for Andrew—the kind of nickname older kids loathe when it slips out in public.) Don was basically gobsmacked. When we had married two years before, in 1990, I had been forty, he fifty-four. Kira, his only child, was a runaway at fifteen, a mom at sixteen, and even, for a while, lived on the street in Communist Prague. Her two older children were being raised by their paternal grandparents in central Europe; another had been adopted at birth in Canada. Don’s heart had already been ripped out, and a second round of parenthood was as appealing as more vivisection.
There was another significant reason for Don’s dismay. Just before he left town, he had been diagnosed with lung cancer. He had postponed the tests to determine whether his disease was operable until after his return, but we both knew the odds: the five-year survival rate was less than 15 percent.
Still, there’s nothing like a more immediate crisis to take one’s mind off future potential calamities. And within a few months, we discovered there was more to worry about than just instant, unanticipated parenthood. This next shock arrived via a routine checkup. The doc brought Andrew up to date on shots, checked his general health (fine), then matter-of-factly said that judging by some of Andrew’s physical characteristics and his mom’s history of drinking, he suspected fetal alcohol syndrome.
Like the majority of the population, including many doctors, we had never heard of fas. The condition wasn’t then, and still isn’t, listed in the Diagnostic and Statistical Manual of Mental Disorders, which makes it stateless among maladies. In the previous half decade, the Globe and Mail had run a handful of articles on the subject, which I may even have read, but they invariably concentrated on fas in the context of benighted locales like Vancouver’s Downtown Eastside and native reservations. As for lay books on the subject, there was one: Michael Dorris’s 1989 The Broken Cord. This related how the author had adopted a Lakota toddler, Adam, and discovered, after years of futile testing and therapy, that his son’s puzzling behaviours were attributable to fas. A tendency to stick chewing gum in his hair was at the so-what end of the list, while a failure to learn from experience and possessing the judgment of a housefly were at the top of the grave-issues scale. Reading this book while waiting for Andrew’s assessment was akin to leafing through Great Naval Disasters just before setting off on a cruise.
It’s hard not to notice that in The Broken Cord once again the narrative revolves around native children. The perception that fas is largely confined to the indigenous population is an enduring fallacy. It’s true that social policy debacles have contributed to disturbing rates of alcoholism, and hence fas, among native peoples; in a study of one isolated BC community, incidence of the syndrome and its variants was found to be nearly 20 percent. However, conservatively, in Canada overall what’s now called fetal alcohol spectrum disorder (which, along with fas and alcohol-related neurodevelopmental disorder includes partial fas and alcohol-related birth defects) affects roughly one person in 100, making it the leading cause of mental retardation. By contrast, the far better-known and much more mediagenic autism and Down’s syndrome occur in 0.6 and 0.14 percent of the population, respectively.
Why this high rate for something that’s totally preventable? It’s easy to imagine every woman knows that drinking while pregnant is on the thou-shalt-not list, but that’s a rather rarefied perspective. Recent, too. Even some doctors remain unconvinced of the link between maternal alcohol consumption and fas, perhaps in part because there isn’t a 100 percent correlation between the two—Kira’s first two children, for instance, were unaffected. And aware of the risk or not, if you’re dependent on alcohol, potential birth defects may not be top of mind.
Spend any time at Toronto’s Hospital for Sick Children, and the kids with bald heads, damaged bodies, and blank eyes are reminders of the misfortune that can strike as randomly as a twister. Tornado Andrew was unfazed by both the general atmosphere and the rather austere geneticist who saw him a couple of months before his second birthday. He winged around looking to snatch anything he could reach, and was far from docile while she inspected this and that body part.
Her physical exam had its origin in a short article published in 1973 in the medical journal The Lancet. Two dysmorphologists, Kenneth L. Jones and David W. Smith, reported the results of their study, which included three native children born to alcoholic mothers. The children “showed a similar pattern of craniofacial, limb, and cardiovascular defects associated with prenatal-onset growth deficiency and developmental delay.” It was this article that introduced the term “fetal alcohol syndrome”—which, it turned out, Andrew had. “He appears to be microcephalic… and his posterior cranial vault appears small compared to his face size,” the geneticist’s report noted. Translation: his head is small. The line between his nose and mouth is also smooth rather than grooved, his eyes are undersized, and his baby fingers and toes are wonky, with the nails tiny or absent altogether. Soon, it turned out he had another common fas characteristic: a bad jaw-to-tooth-size ratio, ultimately rectified by four extractions and $4,500 worth of braces.
Despite the daunting list, most fas kids aren’t what medical professionals privately refer to as flks (funny-looking kids). The worst effect they suffer, and the one that is universal, is invisible: irreversible brain damage that causes developmental delay. When kids are young, though, even this isn’t necessarily obvious. Andrew didn’t walk until he was fourteen months, and didn’t start saying simple sentences until he was past two, but “normal” kids can be slowish to hit milestones, too. Still, caution wasn’t his forte. If he saw a puddle, he had to jump in it. If he encountered a dog, pit bull or poodle, he had to pat it. As Andrew got older, this impulsiveness and paucity of prudence would increasingly be his bêtes noires.
Other bêtes have played a part in the fas saga. Since that 1973 Lancet article, pregnant sheep, mice, rats (albino and regular), chickens, quail, rhesus monkeys—every creature except zebras, it seems—have been subjected to the “insult” of alcohol in order to establish exactly how alcohol is a teratogen, or a substance that interferes with fetal development. However, the number of studies addressing what to do once the insult has occurred is about the same as the number of cats I have, which is two.
Essentially, this means that whether a child was diagnosed a decade and a half ago, as Andrew was, or last week, the best the medical world can offer is guarded optimism. As the SickKids geneticist concluded: “Fortunately, Andrew’s cognitive abilities and head size appear to be less severely affected than his hands, so that one hopes that his intellectual prognosis will be better than average.” Ultimately, she was right: “average” for those with fas is an IQ somewhere in the high sixties; Andrew last tested at 76.
Six months after the diagnosis, life was almost unrecognizable. I had resigned from my job in bitterness after failing to get a promotion I had longed for. Don lost a third of his right lung in surgery and started a long recovery. A drunken Kira gave birth to another boy, who was adopted at birth, and she remained, as they say in the recovery biz, lost in her addiction.
I found myself getting up earlier and earlier each day so I could shower before Andrew awoke and started running amok, that is if my getting up didn’t also rouse him. Since his earliest days at our home, we had allowed him to sleep with us, on the grounds that he had been through a traumatic time and needed the comfort. Admittedly, out of sheer fatigue I did abandon him, howling, in his crib a few times, which just motivated him to learn how to climb out of it, perhaps to launch into one of his favourite activities: pulling all the pots out of a cupboard to use for his Neil Peart imitation. Those were the days, too, of the seemingly spontaneous biogenesis of small plastic objects (which we dubbed, not too fondly, cps, for “cheap plastic shit”). I scrambled for freelance work in between hitting second-hand shops for toddler paraphernalia and attending meetings.
In the absence of a cure, the fas community is big on early intervention, which is apparently code for meetings: meetings with Andrew’s mouthpiece from the Office of the Children’s Lawyer (“You have to understand,” we explained, “he doesn’t talk yet”); meetings with the Child Development Clinic at SickKids; home visits from Children’s Aid (hide the wine bottles!); meetings with the couples counsellor to try to establish a ceasefire over the should-he-stay-or-should-he-go issue.
Don favoured the notion that we allow our personal force of nature to be adopted, “and maybe, you know, we could visit him.” My own upbringing, though somewhat austere, had had at its core the primacy of family obligation, and even if the tie here was somewhat tangential, Boop was family. Anyway, chances were he wouldn’t be adopted, given that Kira was unlikely to consent—she often referred to him as “my keeper.” Instead, his fate would be bouncing from foster home to foster home, where even the kids without special needs have starkly poorer outcomes than those raised in conventional homes.
Most important, though, I adored this winsome terror. When he wasn’t smashing stuff and strewing cps, he would snuggle up for “a hug and a kiss and a pat.” He was fond of being carried, and I was happy to comply. As I murmured to him frequently, “I love you a million trillion.”
Keep a child or let him go: there’s not much room for compromise. We sold the one-bedroom house where I’d lived for seventeen years and bought something large enough for three.
By the time Andrew was five, he was an appealing-looking kid in a deshabille way, with an endearing smile and an outgoing nature, but it was increasingly clear he was not quite like other kids his age. Once he was revved up, it was nearly impossible to turn him off. As other parents would tactfully observe, “He’s very… active, isn’t he? ” At the same time, he couldn’t tie his shoes or hop on one foot or ride a bike without training wheels, and he was physically clumsy. He had started compensating for his ungainliness with the heartbreaking explanation “I meant to do that.”
Andrew’s first full-bore assessment at SickKids resulted in a prescription for Ritalin, and plenty of physical activity to help with his poor motor skills. Soccer, swimming, basketball, volleyball, tennis, gymnastics, figure skating, softball, karate—over the next half-dozen years Andrew did them all, and I have the receipts to prove it. Meanwhile, the Ritalin brought his speed down under the limit, but he still wasn’t adept at following the gentle routines at his preschool, which was why the principal regretfully announced she couldn’t have him back the next year. It wasn’t that he was overtly obnoxious; in fact, he was rather a fave among the staff. They were greatly entertained by his vociferous insistence that a creature called a “hot beaver” existed. But even pets can drive you crazy. As the SickKids assessment had noted, “Andrew’s impulsive style and easily distractible nature will impact on his ability to participate optimally in a learning environment.”
Usually, when “exceptional” kids enter the Ontario public school system they are initially placed in regular classrooms. Only once it becomes blindingly apparent they need more support, which can take years, are they seen by the Identification, Placement, and Review Committee. I had seen the effects of this approach on a friend’s son with fas. He had spent the better part of grade one sitting in the principal’s office, unless his putative teacher was using him as a punishment: “You’d better be good, or you’ll have to sit with Michael.” He got worse, not better, and by the time he made it to the iprc the consensus was he should be placed in a behavioural class, for children prone to throwing chairs around—a bad choice for a kid who will imitate the conduct around him. The experience left my friend weeping into a martini at eleven in the morning.
So via a lot of phone harassment of school board officials, Don and I found ourselves scrunched into Baby Bear–size classroom chairs and inhaling chalk dust in a downtown school on a hot May afternoon in 1996. Everyone on the committee was whacked—they’d seen a succession of parents all day, and we were the last on the list—but one fellow, who had a Fu Manchu mien, appeared to be actually asleep. I had come prepared with information about an early-intervention kindergarten program for children who had “needs in the area of following classroom rules and routines and/or developing social skills and socially appropriate skills.” As backup, I’d brought along Andrew’s SickKids psychologist and his preschool principal.
Despite this arsenal, Fu Manchu suddenly roused himself at decision time and declared, “Behavioural.” The school rep, clearly anxious to get home, agreed. I was already fumbling for my cigarettes. Fortunately, the board psychologist suggested investigating the class I had proposed, which was how Andrew landed at the school he attended until the end of grade six, a place with an understanding principal and devoted special ed teachers.
Andrew’s first four years there were so successful I deluded myself into thinking he’d dodged the intellectual hit. When he aced his grade three provincial test, Don and I celebrated and then fretted: maybe we should have been saving for college after all. By grade four, however, the trajectory was down, not up. There was more to remember—and hence more to forget—and the concepts became less and less concrete.
Another factor may have been involved. Andrew, the gregarious kid who used to approach other children when he was little and announce, “Here’s Awdoo,” had a limited social life during much of this period. His pals from earlier in childhood were now all at the local Island school, and their allegiances were naturally shifting. Because the my-kid-isn’t-invited-to-birthday-parties issue is almost a cliché in child-rearing manuals, it’s easy to dismiss it as parental neurosis, particularly if you don’t have children. But to hear your own kid phoning his old buddies to see if they’re available, only to learn that they’re out, makes you ache for him.
Far worse, though, was his mom’s sudden death, just before the end of grade five, likely from a bad combination of alcohol and codeine. She may not have raised him, but she had loved him and he her. He had spent time at her home; they talked on the phone regularly. When we broke the awful news to him, he asked in a small voice, “Are you sure? ” Later, he wanted to know if she had committed suicide. He largely kept his grief to himself, except for outbursts in which he blamed me for her death (“My mom said you were too controlling and you wanted to steal me from her”). Don, of course, was devastated, and between the crying and the shouting my life began to seem like the plot line of an especially over-the-top made-for-TV movie.
If you don’t understand the learning deficits of fas kids, you could easily mistake their tendency to grasp something one day only to have it vaporize the next, their difficulty with processing more than two or three directions at a time, and their acting out when overwhelmed as laziness, inattention, or deliberate disobedience. This was exactly the conclusion of Andrew’s grade seven teacher. I’d done the usual—bugged the area’s special ed consultant, talked to friends who teach in the public system, steered the iprc toward my choice—only to find at the beginning of the school year that the teacher everyone had thought so highly of had moved.
Despite the detailed Andrew operating manual I had provided, almost immediately I started getting calls saying he’d been sent to the office or was on the verge of suspension. The impression that he was, at best, a goof-off was reinforced by the punk/hip hop “uniform” he had adopted: a 2XL T and monster jeans, accented with a gaudy, oversized crucifix or a spiked dog collar, plus gelled hair sticking up in multiple points. His all-purpose philosophy had become “Fuck authority.”
“Andrew, can you please turn down your music? It’s hard for me to work with it that loud.”
“Who’s going to make me? Fuck authority.”
You get the idea.
Private school wasn’t an option. I had checked out the limited range of special ed institutions earlier in the year, figuring we would somehow cobble together the $20,000 a year for the right place (by this point, I had a stable university teaching job). But it turned out Andrew was a bit too special; what the schools wanted were compliant, low-decibel children who might be dyslexic or a little challenged by abstract concepts. One principal pronounced, as she firmly indicated her school and Andrew were not meant to be, “He is a deeply disturbed child.” Andrew squirmed beside me, making the American Sign Language gesture for “bullshit.”
But she was probably right. Shortly before our meeting, and less than a year after Kira’s death, Don had hit Andrew across the face after he had been especially rude. Immediately banished, Don took refuge with some long-time friends. We didn’t stop to consider that the wife was a justice of the peace, and hence duty bound to report suspected child abuse. My daybook for that period has notes like “Thursday: Valerie (cas)” and “Friday: 11 a.m.—52 Division. [Officers] Karen B. and Larry M.”
For several months thereafter, Don was prohibited by cas from being in the house. By the end of that time, he had rented a condo in the city and started moving his stuff. He became what he wanted to be all along: a grandparent. In a way, I was relieved—no more bickering, or worse, over what to do about Boop. But the peace was short lived. One night soon after, I found myself barricaded in the bedroom while a thirteen-year-old Andrew stood outside, gouging holes in the door with his skateboard and calling me a fucking bitch. Apparently, my efforts to improve his gross motor skills had paid off; mine were failing me as I fumbled for my cell to call the police. Another night, he backed me into a corner in the kitchen as he menaced me with one of the biggest kitchen knives. He shrieked abuse; I sobbed. Often, in the later evening, I would sob some more to the anonymous voice at the end of a distress line, fortified by yet another glass of cabernet.
My friends had some sense of what was going on, but to me, at least, my story was boring. Besides, what could they do? It was harder to see them anyway, because I was leery of leaving Andrew alone. Hosting a dinner party seemed as achievable as scaling Everest. My social life consisted largely of meetings with counsellors, therapists, and other social service types, sometimes two or three a week. I was increasingly isolated and deeply lonely—not for the marriage that had ceased to provide solace, but for normal, non-therapeutic conversation. I recall bursting into tears one evening after some friends who had planned to stop by for a visit called to cancel.
The first time a worker suggested placing Andrew somewhere else, I was aghast. His mom hadn’t been dead that long, his “Papa” had recently moved out—one more loss would be insupportable. But as the violent incidents continued, my resistance waned. I knew it was common for fas kids to start seriously derailing in puberty. In their early teens, a lot of them end up on the streets; by their late teens, they may very well be in the slammer. Plus, I knew I was on the edge.
The social worker was proposing a foster home. What I had in mind was a widely touted two-year residential program for teens with mental health issues at Toronto’s Hincks-Dellcrest Treatment Centre. Because I didn’t think I could hold myself together for the three or four months the wait for a “community” bed would take, in the end I decided to sign over temporary custody to a children’s aid service so as to have him admitted quickly via an “agency” bed. Now Andrew could look forward to a lot of new routines, a roomie, and dish duty. I could look forward to having my parenting micromanaged by twenty-five-year-old, childless social workers.
My name is Lynn, and I’m an alcoholic.” The roughly fifty women in the room—well-groomed professionals, young women who look as if they belong at a dorm gossipfest, and the dozen or so denizens of a local rehab program, many a little the worse for wear—chorus back, “Hi, Lynn.”
I call AA “Booze Church,” not just because the meeting I attend is on Sunday morning, but also because the hour-long gathering is as choreographed as any religious service I’ve ever attended, from the opening moment of silence through the “sermon” (a member sharing her “experience, strength, and hope” for twenty minutes or so) to the closing recitation of the Serenity Prayer, with everyone in a circle, holding hands.
I’m the first in my family to join this congregation. There isn’t a dash of alcoholism in my background. My maternal grandparents were teetotalers; my mom and dad would have a glass of nasty Brights sherry before dinner on Sundays and maybe an India Pale Ale on a hot day. On my dad’s side, overdrinking was my aunts gigglingly having a second G&T before Christmas dinner.
This history, plus focusing—obsessing, actually—on Andrew’s alcoholic heritage, which was at least several generations on both sides of his family, meant it took me a long time to realize that booze had become a problem for me. After all, I wasn’t remotely like those others: prone to drunken rages, drinking anything alcoholic when desperate, screwing up in all manner of ways. No, I held a good job, sipped good wines, then maybe had a Lagavulin or two later in the evening. I virtually never drank during the day, let alone first thing “the next morning” (number eleven on one of AA’s twenty-question “Are You an Alcoholic? ” quizzes). But as the need to intervene on Andrew’s behalf became more and more urgent and the emotional temperature at home got higher and higher, so did I.
Around the time Andrew seemed to be hip-hopping toward juvie, my counsellor had suggested doing an analysis of where my money was going, since I was about $50,000 in debt. I’d been horrified to see that, conservatively, I had spent $5,000 on booze the previous year. She’d also referred me to a doctor who assessed medications for those with mood disorders, since my Prozac just didn’t seem to be doing it anymore. He’d asked disingenuously, “So, how much do you drink? Case of beer a day? ” Well, no, but a bottle and a half of wine wasn’t unusual.
That revelation had effectively ended our meeting. He’d explained that until I quit drinking, there was little he could do about medications, since the two interacted in such a way as to render most drugs useless or unpredictable; I’d filed away “get sober” on the to-do list, well after “find some treatment for Andrew.”
More than a year later, in the spring of 2004, with Andrew ensconced in the Hincks program and actually learning something again at the in-house school, sobriety finally made it to the top of the list, along with completing the last two courses of my Ph.D. I figured quitting drinking would at least free up some dough to pay down my debt and help with the many hundreds of dollars’ worth of required reading. Besides, Andrew was already smoking dope; booze—about as healthy as heroin for fas kids—would doubtless follow, but it’s hard to lecture about why drinking is dangerous with a third glass of wine in your hand.
Getting sober was anticlimactic. It was summer, and I had just arrived, jet-lagged, in Vancouver to run a workshop, and only wanted to go to bed, even though I had made sure to have a stash of two bottles of wine with me. The next evening, I thought, “Let’s try that again,” and went to a movie instead of drinking in my room. The third day, feeling rather nauseated due to withdrawal, I went to my first AA meeting. What I principally recall is an attendee going on at length about the great breakfast he had had that morning: bacon and eggs and toast and sausages… at that point, I bolted for the bathroom.
Except for the throwing-up part, the rest of the week passed the same way: work during the day, AA at night. One day, I called the local AA office to find a nearby meeting and was told the Hobbit group met at 7 p.m. Hobbit group? “Do I have to dress up? ” I joked. “Oh no, ma’am,” the ultra-serious volunteer responded. “AA is very informal.” The day the course ended, I headed out to visit a friend who lived in town. When I walked through the door, he asked if I wanted a drink and I said yes. That gin and tonic and the glass of wine I had at dinner were the last alcohol I’ve consumed in more than five years. The next day, I went to two AA meetings as expiation.
On the occasions I’ve spoken at these gatherings about the challenges and irony of an alcoholic raising an fas child, there’s been no indication that the listeners see themselves in my story. It seems improbable that none of their kids have been affected; maybe it’s that the devastating knowledge that one has permanently harmed one’s child is too hard to concede. Kira was certainly unwilling to admit there was anything wrong with Andrew, and as far as I know she held on to this illusion until her death. And Andrew’s perspective? When I told him I was quitting drinking, his response was a desultory “Cool.” Not surprisingly, he wants to be considered a normal kid and won’t tolerate any discussion of fas; my small cache of books on the subject has always annoyed him (“You’re researching me!”). He knows his mom had an alcohol problem, and he knows the cause of fas, but I suspect it’s no easier for him to imagine that her drinking was the reason for his hated label.
After I got sober, and with Andrew gone five days a week, it became apparent that booze had not been the primary reason I was either lying in bed until mid-afternoon, flattened by the effort required to shower, or sounding like a participant in a speed-talking contest. So I had hit upon a new plan: hard-core psychiatric treatment. I had in mind something evocative of Simon and Garfunkel’s “Mrs. Robinson”—“Stroll around the grounds until you feel at home.” The eight-week Integrated Mood and Anxiety Program, offered at the Homewood Health Centre in Guelph, seemed adequately retro.
Homewood’s gracious red-brick facility dates from late Victorian times, and covers fifty-five well-groomed acres with amenities such as tennis courts, gym, whirlpool, greenhouse, massage services, and—yes!—walking trails. In a horror flick, the genteel facade would have disguised a site of devilish experiments carried out by sadistic staff. True, there were some zombie-like residents who were undergoing electro-convulsive therapy, but for me about the cruellest practice was having to finish dinner by 6 p.m.
Bed checks, mandatory morning exercise, meds lineups, ID bracelets, random urine tests, 10 p.m. to 6 a.m. lockdown—they were all surprisingly easy to adjust to, and gave us something to carp about when we got tired of discussing medications or suicide methods. The myriad forms of therapy, individual and group, as well as the “classes” (Know Your Meds, The Perils of Codependency, or along those lines anyway) kept us engaged during the day, and we got to go home on weekends. So did Andrew, which provided us a chance to bond over our respective restorative environments: “Don’t you hate it when they shine the light in your eyes when you’re in bed? ”
But there were differences, too. Andrew wouldn’t be sprung for another fifteen months; I was back with the earth people after two. If I really were trapped in a made-for-TV movie, at this point I would have marshalled all my new coping mechanisms and, with the help of a binder full of helpful therapeutic hints, resumed real life. Instead, after a call from my department about teaching winter term courses left me back under the covers at odd times of the day, I started plotting how to die.
Like many women who are suicidal, I considered dramatic and violent methods—guns, knives, hanging, jumping from heights—just too… showboatish. Plus, many of these involve preplanning (how do you acquire a gun anyway?) and more activity than I felt up to. I could emulate my younger sister, Kathey, who had driven into the Gatineaus, hooked up the exhaust of her car to her tent, and lain down with a Daphne du Maurier novel—we’re inveterate readers in my family. But I didn’t have a tent.
So the plan was this: Wait until my next meds refill. Drive to cottage. Put sign on car saying, “Call the police.” Down the bottle. Au revoir.
While this was about all I could visualize accomplishing, I could easily and vividly imagine the implications. Even though Kathey’s death had occurred two decades ago, vignettes from that shattering time scrolled through my brain like the crawl on an all-news station. My parents’ uncomprehending pain. Spending the night we heard from the Quebec police numbly playing Trivial Pursuit—you’ll understand if you come from Scots-Anglo-Protestant stock—until we hit the question “What is the theme song of M*A*S*H? ” (No one uttered the answer: “Suicide Is Painless.”) The surreal appearance of Mrs. Green, my first teacher, at the visitation, that peculiar ritual that has always seemed inferior to the shiva, with its symbolically rent garments and no requirement to play hostess or even walk around.
It was the crawl that kept me from making the drive and downing the pills. How would my surviving sister manage having a second dead sibling? And Andrew had already had too much death and disappearance in his fourteen years. There was also my deeply ingrained practicality: you’ve invested so much love and energy and money in this boy; why let it go to waste?
In the smackdown between the Lakota War Cry (“It’s a good day to die”) and Dorothy Parker (“Guns aren’t lawful; / Nooses give; / Gas smells awful; / You might as well live”), Parker, with my kid in her corner, took the bout.
As the Takeovers rip into their first song, the coloured lights flash in sync with the beat, and the smoke machine belches atmospheric wisps. The girls in front of the stage jump and cheer, but the musicians are far too absorbed in their version of “Smells Like Teen Spirit” to take notice. You’d think they were on their first world tour rather than being an opening act at an Island dance where the “groupies” are ten years old and the crowd includes a dog or two. When the set ends, I’m clapping along with everyone, but I’m choking up a bit, too. That confident-looking lead guitarist—the one throwing up his arms to invite applause—is mine.
A few months before he entered Hincks, Andrew expressed an interest in learning to play the guitar. He’s probably one of the few middle-class kids whose starter axe was a Fender Stratocaster, due to the dearth of choices in left-handed instruments. A patient and appropriately cool teacher started him off, and six years, two more guitars, and about a gazillion dollars of other gear later, the kid who can’t tie his shoes is still playing.
This has been transformative. It gives him something to be really good at, which affords him status in the community where he was once rapidly acquiring the rep of “kid least likely to succeed.” Playing also offers a pastime when no one else is around, which is seldom these days. Our house has become a magnet for his posse, who raid my fridge, crash on my couch, stay over for dinner, and hang out in Andrew’s practice space (my former shed; another $10,000 to renovate).
There’s been research that suggests playing music can create new pathways in the brain, improving skills like math, perhaps even raising IQ. Whatever the cause, Andrew’s marks sometimes even hit 80 now. He attends a regular high school, and mostly regular classes, but his “home room” is a special Hincks-run class with about ten kids, a teacher, a youth worker, and, one day a week, a psychiatrist. Not so long ago, I asked him if he planned to finish school. “Well, duh,” was his withering response. “Otherwise, what’s the point? ” In December, he’ll graduate. Some of his friends will be halfway through second-year university by then, but in fas terms completing high school is like other students getting a Ph.D.
In fact, I’m the one still slogging along the doctorate path, when I’m not teaching. Those “last” courses I was taking back in 2004? I washed out and have had to repeat them. There’s been more forward movement on the drinking front: I’m still going to meetings, and I have a sponsor. I’ve acknowledged, as step one requires, that I’m “powerless over alcohol.” Have I come to believe that a power greater than myself could restore me to sanity, which is step two? It depends whether pharmaceuticals count as a higher power.
It was the psychopharmacologist who took me on after Homewood who figured out that my depression had morphed into bipolar one disorder and started me on a whole new regimen of meds. For the better part of two years, I saw him weekly as he upped this and reduced that, added another drug to compensate for the side effects of something else. In time, the suicidal impulse waned, and with the guidance of yet another helping professional I started the months-long work re-entry process.
Andrew’s now talking about attending college, although he hasn’t got more specific than that. And then what? Some studies suggest that only 20 percent of adults with fas are able to live independently. If they fall into that lucky cohort, the age at which they leave home may be twenty-five or thirty. By that time, I will be seventy-one. Stories make the rounds on fas e-groups, recounted as Biblical miracles were, of an fas kid making it through college or university. In one case, the girl’s family moved across the US to serve as her “external brain” while she studied dance.
fas isn’t one of those modern maladies that seem to suddenly materialize, like sick building syndrome or BlackBerry thumb, despite the fact that the Canadian Medical Association Journal published the first set of guidelines for the diagnosis of fas only four years ago. It’s been around as long as pregnant women have been drinking. But in largely agrarian societies, one might imagine there was a place for those suited to simple, repetitive tasks on the farm or in the mill. If we have a modern-day equivalent, it’s retail positions, but I know Andrew wouldn’t last a day in that kind of job: too unpredictable, too noisy, too many people. My fantasy is to parlay his summer gig as gofer at a recording studio (coiling cables and sweeping floors) into some sort of apprenticeship, the way people entered the old craft guilds.
And what about living on his own? One day, I looked into Andrew’s squalid room, with its half-eaten wedges of pizza, dirty dishes, laundry all over the floor. He and a friend were happily sitting in this fetid mess playing something on the Wii. “What are you guys going to do when you have your own places? ” I wondered. “We’ll get girlfriends,” was their snappy response. I suggested no smart young woman would tolerate having to clean up that kind of utter disorder. They had an answer for that, too: “Then we’ll get stupid girlfriends.”
In lieu of the stupid girlfriend, there’s me. If music is Andrew’s craft, raising him has been mine. Like him, I’ve poured myself into this project, studied hard, messed up sometimes, but not given up. Still, in my darker moments—medication can only do so much—it’s hard not to think I’ve become a human sacrifice. And even on my best days, you’re not going to hear me gush about the blessings of raising a special-needs kid.
There are compensations, though. I can see into Andrew’s shed-cum-studio from my kitchen. He often goes out there to practise. He likes to see himself play, so he’s usually facing the mirror on one wall. I like to watch, too, surreptitiously, so he doesn’t see I’m spying on him. He’s serious, focused, concentrating on the fingering and the chord changes. Who knows what larger dreams he’s conjuring?