Tuesday, September 29, 2009

‘Walker, my teacher’

I read five chapters of The Boy in the Moon last night – a memoir by journalist Ian Brown about caring for his son Walker, who has a rare genetic condition. Walker, 13, can’t eat or speak, wears diapers, punches his head mercilessly and cries for no known reason for hours.

The book is exquisitely written – a labour of love. Brown describes the relentless physical care, sleep deprivation and inability to understand a child or soothe his pain that can bring parents to their knees. But he also describes the contradictions – the expansive moments of grace and love. “The strange thing was that all this darkness could be relieved by a few pinpoints of light,” Brown writes.

A smile; a “glee spree” when Walker explodes in laughter; their shared language of tongue clicks; or when the boy finally lets go, resting “calm as a pond” on his dad’s chest in the bath, or sinking into sleep against Brown’s body after hours of soothing. “Everyday occurrences for a normal child. But I know their true value," he writes.

I’m delighted to share with you the first chapter from The Boy in the Moon.

For the first eight years of Walker's life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial.

The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.

Tonight I wake up in the dark to a steady, motorized noise. Something wrong with the water heater. Nnngah. Pause. Nnngah. Nnngah.

But it's not the water heater. It's my boy, Walker, grunting as he punches himself in the head, again and again.

He has done this since before he was two. He was born with an impossibly rare genetic mutation, cardiofaciocutaneous syndrome, a technical name for a mash of symptoms. He is globally delayed and can't speak, so I never know what's wrong. No one does. There are just over a hundred people with CFC around the world. The disorder turns up randomly, a misfire that has no certain cause or roots; doctors call it an orphan syndrome because it seems to come from nowhere.

I count the grunts as I pad my way into his room: one a second. To get him to stop hitting himself, I have to lure him back to sleep, which means taking him downstairs and making him a bottle and bringing him back into bed with me.

That sounds simple enough, doesn' t it? But with Walker, everything is complicated. Because of his syndrome, he can't eat solid food by mouth, or swallow easily. Because he can't eat, he takes in formula through the night via a feeding system. The formula runs along a line from a feedbag and a pump on a metal IV stand, through a hole in Walker's sleeper and into a clever-looking permanent valve in his belly, sometimes known as a G-tube, or mickey. To take him out of bed and down to the kitchen to prepare the bottle that will ease him back to sleep, I have to disconnect the line from the mickey. To do this, I first have to turn off the pump (in the dark, so he doesn't wake up completely) and close the feed line. If I don't clamp the line, the sticky formula pours out onto the bed or the floor (the carpet in Walker's room is pale blue: there are patches that feel like the Gobi Desert under my feet, from all the times I have forgotten). To crimp the tube, I thumb a tiny red plastic roller down a slide. (It's my favourite part of the routine–one thing, at least, is easy, under my control.) I unzip his one-piece sleeper (Walker's small, and grows so slowly he wears the same sleepers for a year and a half at a time), reach inside to unlock the line from the mickey, pull the line out through the hole in his sleeper and hang it on the IV rack that holds the pump and feedbag. Close the mickey, rezip the sleeper. Then I reach in and lift all 45 pounds of Walker from the depths of the crib. He still sleeps in a crib. It's the only way we can keep him in bed at night. He can do a lot of damage on his own.

This isn't a list of complaints. There's no point to complaining. As the mother of another CFC child once told me, "You do what you have to do." If anything, that's the easy part. The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his–a life lived in the twilight, and often in pain? What is the cost of his life to those around him? "We spend a million dollars to save them," a doctor said to me not long ago. "But then when they're discharged, we ignore them." We were sitting in her office, and she was crying. When I asked her why, she said "Because I see it all the time."

Sometimes watching Walker is like looking at the moon: you see the face of the man in the moon, yet you know there's actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me? All I really want to know is what goes on inside his off-shaped head, in his jumped-up heart. But every time I ask, he somehow persuades me to look into my own.

But there is another complication here. Before I can slip downstairs with Walker for a bottle, the bloom of his diaper pillows up around me. He's not toilet-trained. Without a new diaper, he won't fall back to sleep and stop smacking his head and ears. And so we detour from the routine of the feeding tube to the routine of the diaper.

I spin 180 degrees to the battered changing table, wondering, as I do every time, how this will work when he's twenty and I'm sixty. The trick is to pin his arms to keep him from whacking himself. But how do you change a 45-pound boy's brimming diaper while immobilizing both his hands so he doesn't bang his head or (even worse) reach down to scratch his tiny, plum-like but suddenly liberated backside, thereby smearing excrement everywhere? While at the same time immobilizing his feet, because ditto? You can't let your attention wander for a second. All this is done in the dark as well.

But I have my routine. I hold his left hand with my left hand, and tuck his right hand out of commission under my left armpit. I've done it so many times, it's like walking. I keep his heels out of the disaster zone by using my right elbow to stop his knees from bending, and do all the actual nasty business with my right hand. My wife, Johanna, can't manage this alone any longer and sometimes calls me to help her. I am never charming when she does.

And the change itself: a task to be approached with all the delicacy of a munitions expert in a Bond movie defusing an atomic device. The unfolding and positioning of a new nappy; the signature feel of the scratchy Velcro tabs on the soft paper of the nappy, the disbelief that it will ever hold; the immense, surging relief of finally refastening it–we made it! The world is safe again! The reinsertion of his legs into the sleeper.

Now we're ready to head downstairs to make the bottle.

Three flights, taking it in the knees, looking out the landing windows as we go. He's stirring, so I describe the night to him in a low voice. There's no moon tonight and it's damp for November.

In the kitchen, I perform the bottle ritual. The weightless plastic bottle (the third model we tried before we found one that worked, big enough for his not-so-fine motor skills yet light enough for him to hold), the economy-sized vat of Enfamil (whose bulk alone is discouraging, it implies so much), the tricky one-handed titrating of tiny tablespoonfuls of Pablum and oatmeal (he aspirates thin fluids; it took us months to find these exact manageable proportions that produced the exact manageable consistency. I have a head full of these numbers: dosages, warm-up times, the frequency of his bowel movements/scratchings/cries/naps). The nightly pang about the fine film of Pablum dust everywhere: Will we ever again have anything like an ordered life? The second pang, of shame, for having such thoughts in the first place. The rummage in the ever-full blue and white dish drainer (we're always washing something, a pipette or a syringe or a bottle or a medicine measuring cup) for a nipple (but the right nipple, one whose hole I have enlarged into an X, to let the thickened liquid out) and a plastic nipple cap. Pull the nipple into the cap, the satisfying pop as it slips into place. The gonad-shrinking microwave.

Back up three flights. He's still trying to smash his head. Why does he do it? Because he wants to talk, but can't? Because–this is my latest theory–he can't do what he can see other people doing? I'm sure he's aware of his own difference.

Cart him into the bed in his older sister Hayley's room on the third floor where I have been sleeping, so I can be near him. Hayley, meanwhile, is downstairs with her mother in our bedroom so they can get some sleep. We take turns like this, reduced by the boy to bedroom Bedouins. Neither Johanna nor I has slept two full nights in a row in eight years. We both work during the day. After the first six months, I stopped noticing how tired I was: my days and nights simply became more elastic and similar.

Lay him down on the bed. Oh, fuck me dead–forgot the pump! Build a wall of pillows around him so he doesn't escape or fall off the bed while I nip back into the other room. Remember 4 cc's (or is it 6?) of chloral hydrate, prescribed for sleep and to calm his self-mutilation. (I tried a dose once: the kick of a double martini. William S. Burroughs was thrown out of school as a kid for experimenting with it.) Reprogram the pump, restart the familiar mild repetitive whine, his night pulse.

At last I sink into bed beside him and pull the wriggling boy close. He begins to hit his head again, and because we know of no acceptable way to restrain him mechanically, I hold down his small right hand with my large right one. This brings his left hand up to his other ear–"he's a genius for finding ways to hurt himself," his teacher told me the other day. I grab his left in my left, which I have threaded behind his head. He begins to kick himself in the crotch with his right heel, so hard it makes me wince. I run my big leg over his little leg, and lay my right hand (holding his right hand) on his left thigh, to keep it still. He's stronger than he looks. Under his birdy limbs, he's granite. He'll mash his ears to a pulp if no one stops him.

There is a chance, of course, that none of this will work. Every once in a while, the chloral hydrate rebounds and transforms him into a giggling drunk. It's not unusual to have to perform the entire routine again an hour later. When he has a cold (eight, ten times a year), he coughs himself awake every twenty minutes. Sometimes he cries for hours for no reason. There are nights when nothing works, and nights when he is up and at it, laughing and playing and crawling all over me. I don't mind those nights, tired as I am: his sight is poor, but in the dark we're equal, and I know this makes him happy. In the night, there can be stretches when he is no different from any normal lively boy. It makes me almost cry to tell you that.

Tonight is a lucky night: I can feel him slip off after ten minutes. He stops grunting, strokes his bottle, turns his back and jams his bony little ass into my hip, a sure sign. He falls asleep.

I hurry after him. For all this nightly nightmare–the years of desperate worry and illness and chronic sleep deprivation, the havoc he has caused in our lives, threatening our marriage and our finances and our sanity–I long for the moment when he lets his crazy formless body fall asleep against me. For a short while, I feel like a regular little boy's father. Sometimes I think this is his gift to me–parcelled out, to show me how rare and valuable it is. Walker, my teacher, my sweet, sweet, lost and broken boy.
In the early years, after Walker was first diagnosed with CFC syndrome at the age of seven months, the estimated number of people who suffered from the syndrome changed every time we visited the doctor. The medical profession–at least the handful of doctors who studied cardiofaciocutaneous syndrome, or knew what it was–was learning about the syndrome as we did. The name itself was nothing more than an amalgam of the syndrome's most prominent symptoms: cardio, for ever-present murmurs and malformations and enlargements of the heart; facio, for the facial dysmorphia that was its signal characteristic, a prominent brow and down-sloping eyes; cutaneous, for its many skin irregularities. The first time a geneticist ever described the syndrome to me, he told me there were eight other children in the world with CFC. Eight: it wasn't possible. Surely we had been blasted out to an unknown galaxy.

But within a year, after our doctors had begun to sweep the medical literature for references to CFC, I was informed there were 20 cases, because more had turned up in Italy. Then there were 40. (The speed with which the number changed made me sneer at the doctors: they were trained medical professionals, surely they ought to know more than we did.) More than 100 cases of CFC have been reported since the syndrome was first described publicly in three people in 1979; some estimates are as high as 300. Everything about the syndrome was a mystery, an unknown. It was 1986 before it had a name. Symptoms ranged wildly in severity and kind. (Some researchers believe there may be thousands of people with CFC, but with symptoms so mild the condition has never been noticed.) Some CFC children hit themselves, though most didn't. Some could speak or sign. All but a few were anywhere from mildly to severely retarded. Heart defects ranged from serious to unimportant. (Walker had a mild murmur.) Their skin was often sensitive to touch, to the point of agony. Like many CFC children, Walker couldn't chew or swallow easily; he couldn't speak; his vision and hearing were compromised (he had narrowed optic nerves, one more than the other, and skinny ear canals subject to incessant infection); he was thin and wobbly, "hypotonic" in the medical jargon.

Like virtually all CFC children, he had no eyebrows, sparse curly hair, a prominent brow, wide-set eyes, low-set ears and an often charming cocktail-party personality. The CFC features grew more noticeable, more "abnormal," as he grew older. I assumed my little boy was an average example of the condition. It turned out I was wrong. It turned out the average didn't exist– not here.

Nor did those conditions change. Today, at thirteen, mentally, developmentally– I'm terrified even to write these words–he's somewhere between one and three years old. Physically, he's better off than many CFC children (he doesn't have frequent seizures, doesn't have ulcerated intestines); cognitively, less so. He could live to middle age. Would that be good luck, or bad?

Minus a few new genetic details, this was and still is the sum total of what the medical profession knows about CFC. It isn't widely studied, as autism is. Most parents of CFC children know more about the affliction than their pediatricians. The CFC population isn't large and politically powerful like that of Down syndrome, which more than 350,000 people live with in North America, and which occurs once in every 800 births. CFC shows up no more often than once in every 300,000 births, and possibly as rarely as once in a million. The National Institutes of Health Office of Rare Diseases characterized CFC as "extremely rare," way out at the far, thin end of the statistical branch, alongside bizarre genetic anomalies such as Chédiak—Higashi syndrome, a bleeding disorder caused by platelet dysfunction and white cell abnormalities. There were only two hundred known cases of Chédiak—Higashi, in part because so few born with it ever survived.

Raising Walker was like raising a question mark. I often wanted to tell someone the story, what the adventure felt and smelled and sounded like, what I noticed when I wasn't running through darkness. But who could relate to such a human anomaly, to the rare and exotic corner of existence where we suddenly found ourselves? Eleven years would pass before I met anyone like him.

Excerpted from The Boy in the Moon by Ian Brown Copyright © 2009 by Ian Brown. Excerpted by permission of Random House Canada

Wednesday, September 23, 2009

Friendless, forever?

Jennifer’s post about how traditional friendships are not possible for her son Owen got under my skin, manifesting itself in a big knot about four inches down my spine.

I’m familiar with that knot, and it tends to flare up when the Momma bear in me is fighting an injustice that I know to be reality, but which I can’t accept.

As Elizabeth notes in her comment, there’s something taboo about the idea that disabilities could render a child incapable of friendship: “I've never seen it written…Those thoughts we of like mind share and never dare to write.”

At first I wanted to argue against this premise on the basis of semantics. Jennifer defines the word friendship in her post as an independent relationship that is reciprocal and voluntary. But does friendship have to be reciprocal? What if I “choose” to befriend someone who can’t actively reciprocate? Does that nullify the relationship?

And then there’s the notion of an independent relationship. Can a relationship be independent? Doesn’t that sound mutually exclusive?

I know what Jennifer means, that a conventional friendship has to be sewn and sustained by two independent children who can choose to participate over time, and do so without the support of others. The children need to be able to contact each other – in person, on the phone or online – and communicate. They need the language to understand and enjoy each other’s company without the intervention of others.

I guess we could argue that perhaps traditional friendship is not all it’s cracked up to be. Why not loosen up the definition to make it more flexible to children with special needs?

However, this line of reasoning merely distracts us from the painful reality that kids with severe disabilities in families like Jennifer's and mine don't have friends.

At our house, handfuls of children – friends of Ben’s siblings – traipse in and out. Ben (photo above) loves it when they’re around, and is sad when they leave.

He occasionally gets invited to a birthday party, though there have been years when not a single invitation arrived.

He’s cabbed to a school a terrific distance from our neighbourhood, and most of the students there are bussed from all over the city. We’ve tried inviting kids over, but visits need to be facilitated by us because of the communication barrier (Ben doesn’t speak and knows basic sign), and nothing enduring has occurred.

Wait! There was one typical boy from Ben’s previous alternative school who showed up at a movie theatre on his own last year for Ben’s birthday. And this summer, we made a breakthrough when Ben attended overnight camp. When we picked him up, every camper had a story about something they’d done with Ben. They seemed to genuinely know him and accept him as a friend.

At other times, we’ve invited every child from Ben’s segregated school class to a birthday party, and only one showed up. The teacher explained that when kids are bussed to school, many parents don’t take the time to drive their child to after-school events, or to reciprocate outreaches.

It breaks my heart when he stands at the window signing “friends – where?” and I don’t have one good reason as to why they didn’t come (or even RSVP!).

So as much as I’d like to argue that really our kids with significant disabilities do have friends, or have the same opportunities as our other kids to have friends, the reality is that they do not.

And while Jennifer may have reached a place where she can accept her son’s lack of friendships – because he does have meaningful interaction with family, paid caregivers and others – I have not.

That childhood could be friendless is inconceivable to me. My body rebels against the idea that a kid – any kid – can’t have friends.

Friday, September 18, 2009

'Owen doesn't have a single friend'

Can children with severe disabilities and limited communication have friends? As parents, it goes without saying that we want our children to have friends, but Jennifer Johannesen has found this isn’t in the realm of reality for her son Owen, 11 (see right of photo above). Owen is deaf, non-verbal, non-ambulatory and requires full support for all aspects of daily living. His brother Angus, 9, is typically developing (at bottom of photo). You can read Jennifer’s eloquent writing about life with Owen at Yes or No/Big Decisions. Here she reflects on Owen’s lack of friends over the years. Thank you Jennifer!

'Owen doesn't have a single friend'
By Jennifer Johannesen

When Owen was younger, my biggest wish for him was to have friends. I created inclusive play environments, sent him to programs that could seamlessly accept him and his support workers, and spoke positively to other children about how Owen was really just like them underneath. I bought into this notion that if only other kids could see the ‘real’ Owen they would want to be his friend and spend time with him. They would learn how to use sign language and his communication method of the day and even use his switch to play turn-taking games!

There is value in these endeavours and in hindsight all were worthwhile, for a whole slew of reasons.

But what about friendship?

I ask myself now, even if this idyllic scene came to fruition, how is this even close? Sure, Owen has clear facial expressions to indicate his overall likes and dislikes, but nowhere near the nuance of language or communication required to establish an independent relationship with someone. I guess we can define friendship any which way, but even the most simple definition must include the requirements of being reciprocal and voluntary.

Based on this, I can say now with confidence that Owen does not have a single friend. He does not choose who he spends time with, he does not remember birthdays and he does not lend a helping hand in times of crisis. And there is not a single person who comes by the house to see Owen who isn’t family or a paid caregiver or from a social services agency.

Here’s why this is okay:

Owen experiences moments of connection throughout his day that make him glow from head to toe. When his brother holds his hands walking down the street. When Sallyanne or any of his other caregivers arrive for the day and he nearly jumps out of his seat with joy. When Angus’ friend makes faces at Owen to get a laugh, and announces “Owen’s cool!”

I love and appreciate these moments for what they are – and I don’t pretend they’re something they’re not. Calling anybody his friend does a disservice to Owen and these experiences because it’s simply not real. It’s an attribution of qualities that only serves to demonstrate the generosity of spirit of the person saying it. Or to mask the discomfort of reality.

And it really is okay that he doesn’t have friends because I see value in the interactions he does have. More important, I think he values those interactions. And I don’t place judgment on whether or not this is better or worse than what we call friendship.

Tuesday, September 15, 2009

A new voice – and a measure of independence

For 27 years, Dung Le’s mother has been at his side. That’s because Dung (photo above) has cerebral palsy and can’t speak. His mother Yen is one of the few people who can translate his sounds and gestures.

When Bloorview engineering student Negar Memarian first met Dung, he wanted a way to select “A, B, C, or D” so he could answer multiple choice tests on his own. As a business college student, he didn’t like his mother interpreting his answers for him.

“This guy had so much motor disability and so much intelligence,” Negar recalls.

During their meeting, she noticed that while Dung’s movement in general was limited, he could open and close his mouth.

Knowing that an infrared camera detects heat – and our oral cavity is warm – Negar developed a system that translates a camera image of Dung’s open mouth into a computer command, allowing him to type, play simple computer games, and turn pages in an online book.

Not surprisingly, the first word he typed – by opening his mouth to select the letters he wanted when an on-screen keyboard scanned the alphabet – was a tribute to Yen: M U T H E R (mother).

Infrared cameras – used for military surveillance, medical imaging and firefighting – map cold regions with dark colours and warm areas with brighter ones. Extreme warmth is represented with white.

Negar created an algorithm that activates a switch when it detects movement and the shape of Dung’s open mouth. He tends to smile, resulting in a horizontal patch of heat-induced white. An open mouth is like an on switch, while the closed mouth signals off.

The current high-end infrared system Dung uses at Bloorview costs about $50,000 and isn’t portable. Negar and her colleagues hope to develop a handheld version that can be mounted on a rod on Dung’s wheelchair, to the side of his head, at a cost of about $2,000.

The advantages of the thermal camera are that it works regardless of light conditions and is non-invasive.

Negar is completing her biomedical engineering PhD at the University of Toronto and her research training in Tom Chau’s lab at Bloorview. Tom holds the Canada Research Chair in pediatric rehab engineering.

Negar began her studies in electrical engineering, but says she quickly tired of it. “All of these equations and numbers were very interesting, but I couldn’t understand how to apply them for the benefit of people. Biomedical engineering is the way to make a contribution directly to people.”

Friday, September 11, 2009

Breaking windows with my son

Get ready for some beautiful writing.

This is a guest blog from David Sexton, pictured above with his adorable one-year-old son. David is a software development manager who lives in Hoboken, New Jersey. In his blog, Scattering Bright, he writes about parenting his son, who has cerebral palsy, and family life with his three-year-old daughter and wife. David's writing has also appeared recently in two guest blogs on the New York Times Motherlode blog: Out of breath and Swimming in the dark.

Thank you David! Louise

Breaking windows with my son
By David Sexton

One of the things I like most about September is running with my son in the morning. The air is a little cooler and if I time it right I’ll catch the light just as it’s dawning over the Hudson River. And I’ve got my son to help me with the timing – he’s like an alarm clock that won’t take no for an answer.

“Ha-aye-yah! Clatter! Thump!” That’s the sound of my little guy on a good morning.

It means he’s throwing his toys out of the crib with his right arm. And when I hear that ruckus I know that his tosses have cleared the rugs and pillows around his crib and made it out onto the hardwood floors. He can't use both hands - his cerebral palsy prevents this – but he’s learned the trick of throwing discus style across his body. With this method he’s getting some serious distance. He lets out terrific laughs as he makes these throws; kind of like a baby giant hurling rocks. It makes me laugh too.

Today was one of those good days and I managed to get myself out of bed and up the stairs before his playful mood started to flag. The clock said 5:45 a.m. and a dim light was just coming in through the windows.

He must have heard the sound of my steps because he was quiet and looking out for me with a smile when I came into his room.

“Da!” he said as I pulled him up and out for a change before we headed down for his breakfast. When we got downstairs, I set him up in his high chair and he munched on Cheerios while I did warm-up exercises on the kitchen floor. Sometimes he throws his little Os at me – I guess I make a tempting target.

“Nooo!” I say with exaggerated shock and surprise. He just laughs.

“No,” he repeats and throws another Cheerio at me. “No.”

I think that he thinks that ‘no’ means ‘throw.’ It wouldn’t surprise me. He likes throwing things so much, and so many of the things he likes to throw make such a mess, it’s a word he hears a lot.

Today he obliged me by eating (what he didn’t throw) quickly. I laced up my shoes and swept up the floor and took him under my arm. I retrieved the jogging stroller from our car (where it doubles as a travel stroller) and strapped him in.

“Go!” I said before starting my run, pushing him ahead of me. I try to use the run to practise words with him.

On a good day like today he’ll babble and look all around him at the sights and sounds of the city in the morning: delivery trucks, other runners, police and busses. I can see from his movements in the carriage that he wants to get out and play with everything; he looks like a player leaning off the bench, eager to get into the game.

I wonder, especially as I run, about that right hand of his. He loves to use it so much. I wonder if he’ll find an activity that will give him some pleasure some day. I can’t help but notice how much he could do with his good arm alone.

Other people have noticed it too.

“Wow, what an arm,” the technician said to me at the hospital the day of my son’s MRI. He was one of the team of people who prepared my son for the exam. After setting up the equipment, he stayed to help me hold my son while the doctors gave him anesthesia. He was trying to catch my son’s arm, which was darting around quicker than a bat, when he said this.

“Gonna break windows with that arm for sure. Could pitch with that one. Yeah, sure could,” he added with his brisk city accent after catching his arm and gently settling him down.

Those words were a comfort to me, not only because it was good to hear a steady voice when I was upset, but also because those words had come so naturally – they were truly meant. It made me think of all the things my son could do in the future. It gave me hope when I was feeling low.

We spend so much time working with my son on his weak side – the most outward sign of his cerebral palsy. Therapy and exercise are part of every day for him. Every doctor’s visit is focused on that side. So much emphasis on what’s wrong or missing. It gets to be overwhelming.

And even more than that is the feeling that his strength needs to be held back to allow that weak side to develop. Every time we have to restrain that strong right side I feel a little pang. It feels unnatural to do that to a child. The native, sentimental side of me just wants to cop out of every one of these exercises.

“Let him free,” a part of me yelled out quietly for that month he had to wear a brace. “Let the kid throw something. Let him be happy.”

It seemed unfair that he has to work so hard at just being a kid. It made me think of all the other kids that have similar or greater handicaps. I wanted to break him out of that jail – to set him free.

But I know what’s right too. I know that the constraint therapy was (and is) the right thing to do. It’s already made an impact. And as his left side gets stronger and more relaxed, his right arm is growing even more strong and agile. I know the therapy helps.

I took him up to Castle Point today. It’s a hill in Hoboken that overlooks the river. There’s a great view of the Hudson from up there and an expansive view of the New York skyline.

It was a cloudy morning, but the river was calm and the colour of muted bronze in the dim light. Little ferry boats and barges moved across it quietly. I love being up there for a run. Between the city and the river and the exhilaration of running I can’t help but feel inspired. I feel free. It’s a feeling that I want to share with my son. I feel, when I’m like this around him, that we’re just two boys together. I’m not old (or too heavy) and he’s not impaired – we’re just boys running along a river. I hope he feels something of this. I hope a little of that sense of happy freedom rubs off.

“River,” I said to him (and say every morning). I did the same with my daughter to teach her words.

“City,” I added, raising my finger to the skyline. He just looked. I rubbed his little curly head and we headed down the hill. We finished the run and I got my wife and daughter up. It was time to get ready for the day. Time to be serious again.

It’s hard balancing my son’s needs with the ordinary wishes that a father has for a child. Hard to do what’s right. I wish I had that objective confidence that the technician had when he looked at my son. I wish I could see past the work he’ll have to do and know that he’ll have fun too.

I suppose I worry too much. He’s such a happy kid and so naturally active that he’ll probably find his own way to let off steam if I’m smart enough to let him be. He’ll find a way to just be a boy.

Maybe the technician at the hospital is right. Maybe the worst we’ll have to do some day is pay for some broken windows. I hope it’s true. It’s a bill I won’t mind paying one bit.

Wednesday, September 9, 2009

Taking a stand

Isn't this the cutest picture of my son Ben in hospital 11 years ago? Ever since he was an infant, he's had a tuft of hair that insists on sticking up in the centre of his head. Even when in pain, his Richard Scarry videos could elicit a smile. This is a personal essay I wrote about how Ben and his journey changed me, and gave me courage I didn't know I had.

How has your child changed you? Louise

Taking a stand
By Louise Kinross
At last, he sleeps. He floats. His chest fills and empties. His extravagant eyelashes flicker over a dream. He is still.

We've been at the hospital for six hours. Earlier, when nurses struggled to stick an IV into his thread-like veins, he screamed and swung his small, weak arms. D’Arcy and I held him down while they pricked at him, again and again, each poke a stab in my heart.

"It's okay Ben."

"I love you Ben."

"Ben. You need the IV for the operation!"

Now, he lies like deadweight in my lap. He’s four, but the size of a two-year-old. We breathe in tandem, in and out.

Through a glass window I can see the nurses and doctors in the operating room on the other side of the hall.

My son, Ben, has a rare genetic condition called Langer-Giedion syndrome, a random deletion of two genes that probably occurred during cell division. In addition to unusual facial features and protruding ears, he struggles to hear, walk, and speak. We’re in the hospital because he’s stopped growing. Doctors call it “failure to thrive.” Despite a high-fat diet and months of recording every morsel that passes his lips, he’s only 27 lbs.

He's here to have a hole punctured in his stomach so that an artificial feeding tube, known as a gastrostomy – or g-tube, can be placed. It's hoped that nighttime feeds will kickstart his growth. To try to make this palatable to Ben, we explained that he would be getting a new belly-button – he would have two!

Twice, the surgery was cancelled the day before scheduled because of a nursing shortage at the children’s hospital.

The second time I called the patient advocate. "Do you know how traumatizing it is to prepare our four-year-old son for this surgery? We’ve booked off work and arranged care for our two-year-old daughter. What am I supposed to tell my son?"

It's always been hard for me to speak out. I grew up in a British family that was concerned about manners and appearances. My Dad came from a long line of Scotsmen who never complained. I had a wobbly sense of self that relied heavily on the images others held of me. I wanted to be liked. As a result, I smoothed things over when there was a problem. I respected authority and didn’t rock the boat.

That didn’t bode well when I gave birth to a child who was medically compromised.

When Ben was only a day old, a nurse came to my hospital room and lifted him out of my arms. Speechless, I trotted down the hall behind her and into the clinic room, where the pediatrician waited.

“The doctor wants to look at him,” she finally explained – motioning me to the door.


I walked back into the hall and the doctor slammed the door.

When Ben was close to a year, he developed torticollis – the muscles were too strong on one side of his neck, causing him to sit with his head in a perpetual tilt. “Ben has a rare genetic condition,” I said, as we introduced ourselves to the new therapist assessing him.

“I can SEE that,” she chortled.

Ten days later, as Ben lay on an examining table charming a handful of medical students, the surgeon who was to bring down his testicles pranced into the room and demanded angrily: “What is WRONG with his head?"

I explained that he was born with a head circumference in the 50th percentile, but height below the 3rd, making him look like a little Buddha. He’d already had an ultrasound to rule out hydrocephaly. “What about mental,” the surgeon continued, using his own shorthand for mental retardation. “What about mental?”

The implication that my son was imperfect, flawed, deformed – and lack of the most basic respect for him as a human being – could send me reeling with rage and grief for days. But I didn’t say anything.

Now, I have a four-year-old disabled son who can't speak. I am the only voice he has. So I call the patient advocate to complain about the cancelled surgery. She says the surgeon will call me, but he never does.

Instead, the surgery is rebooked a third time. Finally, the day arrives.

Ben is sprawled over my lap, hooked up to the IV pole and mercifully, after hours of misery, in a deep sleep. D’Arcy has gone to grab a coffee. We’ve graduated from the waiting room to the surgeon’s inner sanctum, an office directly across from the operating room where he’s giving me final instructions.

There's a tap at the door. A nurse sticks her head in, wide-eyed. "I need to talk to you," she says to the doctor.

The doctor leaves, closing the door. Seconds later, he’s back. "I'm sorry, but the surgery has been cancelled," he tells me.

The words are so unbelievable that at first they hang in the air like icicles.


"There aren't enough nurses on the floor upstairs."

I look over at the OR and the expectant faces waiting around the table for my boy. I look down at my son.

I picture us taking him home, trying to explain when he wakes up that the surgery never happened. I imagine telling him that we have to do it all over again: nothing to eat or drink that day; the bungled IVs and pain in his bruised arm; the undignified barium up his bottom; the hours of waiting.

I feel the heaviness of his weight sink into me, the lack of resistance, the letting go.

I'm trapped. I can't do this to my son.

"I am not moving until my son has his surgery," I say, speaking with a force that surprises me. "I am not getting up, I am not going home. I am not going to put him through this again."

We sit in silence. Hot tears gather behind my eyelids. I look into his eyes and I can tell he is a good man.

"Let me see what I can do," he says. He picks up the phone and calls a senior executive.

"Thank you," I mouth, as the tears trickle down my face.

The surgeon overrides protocol. Ben goes to the operating room and I go to the waiting room.

I feel depleted and strangely giddy, powerful.

My son may never speak. But he's given me a voice.

Wednesday, September 2, 2009

When children hurt themselves

In the Summer 2008 issue of BLOOM we ran an article by educator and social worker Felicia Jervis about compassionate approaches to children with autism and other developmental disabilities who self-injure.

This summer we printed a response from Dr. Louise LaRose, a behaviour analyst, who presented a behavioural approach to reducing self-harming behaviour.

We know child self-injury is a painful challenge for many parents, and want to share two more letters we received. Following are excerpts.

Join the discussion by posting a comment below.

Thanks! Louise

Social devaluation at root of self-injury
My experience over 38 years supports what Felicia has to say in the work I have done with both children and adults with disabilities, not to mention with psychiatrists and clinicians in general as well.

"There is a lot of good research to show that children will continue to self-injure when something positive follows the behaviour," writes Dr. LaRose.

There may be research showing this, but I would need to look at it and see what the context was...know what understanding existed about the “reasons” for the behaviour. Children with disabilities often experience profound rejection early in life for example, become deeply wounded by how others see and thus treat them, often in negative role stereotypes.

The “reasons” are therefore not always obvious or knowable unless one sees the larger issue of societal devaluation (Social Role Valorization). If this greater understanding is not part of the picture, then sure, giving someone a candy bar just to stop them from hitting themselves would probably not be wise. But I do not think that this is what Felicia is suggesting.

Have you read Punished by Rewards by Alfie Kohn? Rewards are just the opposite side of the coin from punishment, but fundamentally the same coin. Unconditional Parenting is another book by him, highly recommended.

Dave Yeiter
Director of Quality Enhancement and Training
Gentle Teaching Coordinator
Monadnock Developmental Services, Keene, New Hampshire

‘Greater problems arise when we choose not to validate an individual’s needs’

I work as an educational assistant for a public school board and I am always asked to assist with the “crème de la crème” of behaviour students. Why? Well, I would venture to stroke my ego and say I get results. The question is what kind of results are they? Are they results that will benefit the child or destroy the child even further?

I personally have found that many children with questionable characters are the ones who have carried into school the “luggage” that follows them around in their home lives. They are, in fact, starving for attention of any sort, whether negative or positive and respond rapidly to both. Why are aggressive children so starving for attention? Well, I would venture to say because of their lack of it. My observation also and I am sure all would agree here is that these children are extremely sensitive (if one is able enough to remove the sheep’s clothing). I say this to all teachers at the school I am employed, and so “what is wrong with a hug, a chocolate treat to soothe the taste buds, a warm drink to calm the palate?” Perhaps they are so desperate for it, thus soaking it up like a sponge.

I guarantee that when we as adults are feeling “out of control” (and we all do) that a warm cup of tea, a sweet, a hug from a caring individual does not teach us that feeling out of control is the way to be, but that it is OK to feel this way. Greater problems arise when we as human beings choose not to validate an individual’s needs, wants and desires, instead we become afraid, of what – the results of showing affection to another in their deepest time of need? Why? Because we think that every time they cut or bite themselves when we hug them or offer them food we are telling them to continue this self-injurious behaviour and you will always get a hug or receive comfort through food? Highly unlikely! I say, SO WHAT?

Observe them, catch them prior to self injury, hug them then, snack with them then, teach them at this time the reciprocity that can come from caring for someone – if they need this at this particular time in their life, guess what – it is probably for a damn good reason! It will not harm them but teach them the value of virtues which should be spread from human being to human being!

So I say – next time you as an adult are feeling low, lonely, sad, angry, and you feel like anxiously biting your nails or perhaps think of entering into an adult type of “self injurious behaviour” (commonly known as smoking or alcohol or other?) I hope your friends hug you or offer you a warm cup of tea with a fresh baked chocolate chip cookie warm out of the oven instead of saying “no” to you directly and re-teaching you how to direct your anger!

Caroline Carrington
Educational Assistant