Bluefooted

Quebec’s Bonaventure Island is a major nesting ground for the northern gannet. There the bird’s more likely to be known by its French name, le fou de bassan. Watch a flock of these long necked seabirds torpedoing with exquisite grace into the ocean at 60 miles an hour (which you can easily do these days via youtube), and you might wonder why any one of them would ever be labelled a fool. Their icy blue eyes come equipped with a rare adaptation, binocular vision. This is how gannets spot fish from heights of up to forty meters. They pierce the ocean with a grey-blue, hundred millimeter bill, made extra sleek by a creepy lack of nostrils. A system of air cells between skin and muscle inflate to cushion the body just before it hits the water. These are the action hero/assassins of the bird world.

But on land, gannets are a mess. They have unusually short legs and big feet. They waddle around like what they essentially are, ducks. They huddle together on rocky promontories, where they peck at each other as helplessly and stupidly as if they’d been raised in factory farms. Every goodbye is a sad clown production. As Earl Godfrey writes in The Birds of Canada: “The bird wanting to leave for a flight, solemnly raises the head and points the bill tip skyward, partly spreads the wings, and depresses the tail. With weird moans it waddles and hops its way toward the cliff edge or a less crowded part of the colony. Each time it passes too close to a neighbour, a furor is created with many a bill thrust and vocal threat received. Using both legs and wings, it rushes ahead and becomes airborne.”

Gannets have a southern cousin, the Blue Footed Boobie of The Gallapago Islands (aka le fou à pieds bleus) whose family shame is better known. More famous for his silly dance, than his impressive flight, the Boobie is an inspired choice by the CanChild Centre for Childhood Disability Research, as a mascot for Developmental Coordination Disorder. I discovered the Boobie’s talents a few years back, after my son, Ben, was diagnosed with DCD, or its more medicalized label, developmental dyspraxia.

If Ben could fly, I’m sure he would be awesome. But he’s a boy. Less like a bird than a ferocious lab monkey, or a study in alchemy. He is driven by an energy that transforms endlessly throughout the day, from molasses to mercury and back again. It can take him twenty minutes to get his clothes on in the morning. When he’s not putting on socks with punishing slowness, he’s jumping on the bed, joking, picking fights, doing everything short of throwing food, or putting on the second sock. It drives me crazy. He’s eleven. We should be past this by now.

By the time he was formally diagnosed, when he was eight, I was already minoring in neuroscience for mothers. At three, he’d been diagnosed with epilepsy, which was, relatively speaking, a piece of cake. According to his neurologist at The Montreal Children’s Hospital there was a 50-50 chance the epilepsy would resolve itself. Five years later his EEGs were normal and he was off the medication. But DCD has been different.

“This will always be a problem,” she warned me ominously when she noticed his poor pinch grip at age four. “He may need rubber pencil grips when he starts school.” It was the first indication of the motor skill challenges that would become increasingly obvious as his peers outgrew them. But back then I was more focused on his epilepsy, and the early signs of a quirky but powerful intelligence. It never occurred to me to be too concerned about the looming spectre of rubber pencil grips

When Ben was two, his educator at our local Centre De Petite Enfance (the name for Quebec’s government subsidized daycare system) insisted he would become an artist. His concentration filled every corner of the page with intense idiosyncratic scribbling. He was like a toddler Jean-Paul Riopelle, the most famous of the Quebec Automatistes, the Pollock-era group of abstract expressionists who released a 1948 manifesto calling for a world of “resplendent anarchy.” But by age four, when his problems drawing the uniform shapes that came more easily to other kids started to emerge, he seemed to be drafting his own Refus Global, even if he couldn’t technically write it yet.

His kindergarten teacher, Pierre, was an old school early childhood educator in his late fifties. “Has he even been to pre-school?” he asked me, aghast, on the second day. When it became obvious by November that Ben was already counting to a hundred and reading fluently in both French and English, Pierre relaxed on the strict pedagogy of colouring inside the lines. He wrote off his artwork as “speciale,” though not in a nice way.

 

The Greek suffix praxia means to achieve, to do, or to perform. So it follows that dyspraxia is an impairment of the ability to plan and carry out sensory motor tasks. It’s estimated that, like dyslexia, there is probably one child suffering from this in every classroom. A child with dyspraxia usually has normal muscle tone, and sometimes excellent conceptualization abilities. Ben has a very clear picture of what he wishes to achieve, but his motor processes follow these plans erratically.

This affects not just fine motor skills, but creates a whole laundry list of problems associated with weak gross motor skills too: poor balance, bad posture, and shallow breathing as a result of the poor posture. The constant chronic stress of being accident prone and uncomfortable in one’s own body saps energy, concentration and short term memory. So the child who has difficulty managing his or her body, often grows up to become the adult who has difficulty managing his or her life.

Dyspraxia became slightly better known after the summer of 2008, when the actor Daniel Radcliffe revealed he’d been diagnosed with it as a child. He says he went into child acting because “I was having a hard time at school, in terms of being crap at everything, with no discernible talent.” So the best case scenario: with chance, a great work ethic, and an independent learning plan financed by Hollywood studios: a child could eventually become the star of a Broadway revival of How To Succeed In Business Without Really Trying, and suffer nothing more damaging than a few condescending reviews noting the irony of his effortful choreography.

The worst-case scenario was presented in one Swedish study that followed non-medicated children with ADHD and compared them with children who had been diagnosed with a combination of ADHD and DCD, from age 7 to age 22. In the group of children suffering from ADHD alone, 13 % of children were now struggling with anti-social behaviour, addiction, alcohol abuse, and criminal offending. But those suffering also from DCD were struggling with a significantly more dire, 58 %, slice of antisocial pie.

There are no follow up studies that I could find about kids who are suffering from stand alone DCD. The disorder is notoriously underdiagnosed. It has been called “the hidden disability” by those in the know. It’s estimated to affect about 6% of the population, but DCD is usually only diagnosed with a more obvious co-morbid disorder like ADHD, autism, or in Ben’s case, epilepsy. Most children remain undiagnosed as their parents and teachers wait for them to “outgrow” it. But a child with DCD, diagnosed or not, will probably still be struggling years later. Self-esteem, especially in our media saturated society, is intimately intertwined with body image. Moreover, dyspraxics are magnets for lifelong anxiety disorders. The neuropsychologist who evaluated Ben was particularly concerned about a family history of severe OCD. Some dyspraxics go through life messy, and poorly organized. Others go the polar extreme, cultivating a maladaptive rigidity both physically and psychologically.

Many kids suffering from DCD develop enough coordination to ape normality. But they may still always feel internally out of sync with their surrounding world, and retain a tendency to mature slowly. They often develop what is called an “external” locus of control, a core belief that they have a diminished power over the world around them. A child can and will probably learn to master the rudimentary tasks that demand coordination. But the greatest challenge for these kids is shaking off the contempt they will too often suffer in a society whose core values are speed and efficiency.

There is a bright side. Ben’s poor body memory seems to have opened the door to a voracious intellectual memory. He is a rare breed of North American boy obsessed with sports statistics and art history. When he was six he asked me about the monkeys he’d seen in a Frieda Kahlo self-portrait. This led to his discovery of Wikipedia. A few weeks later there were screams from the kitchen. “Mom! Mom! Come quick.” He was pointing at the travel section of La Presse like it was on fire. “LOOK! There’s an article here about the town Diego Rivera was born in!”

This was probably right before he knocked over a glass of juice, or was halfway through getting dressed for the swim class he would have to retake four times before being allowed to progress to the next level. Or maybe this was a day before one of those days, that were becoming more and more common, on which he’d complain that he wasn’t as popular as he wanted to be, or describe a game of schoolyard tag that sounded suspiciously to me like Elizabethan bear baiting. Or right before the report card full of As and Bs, except for the Ds in art, writing and comportement.

At first the behavioural problems the teachers complained of were rarely about aggression or disruption. They complained more of what seemed like an obstinate slowness. His poor short-term memory for basic instructions also appeared to them as carelessness and indifference. And of course, after a couple of years of irritated teachers, his early snowball of sullenness dissolved eventually into a flash fire attitude problem.

Working with an occupational therapist reversed some of that momentum. His chair and desk at school were lowered to prevent against slumping and the low-grade vertigo created by dangling feet. Teachers began to gradually accept and understand that he needed more cues. His OT, Isabelle, suggested une petite ange, a more organized, patient peer who wouldn’t mind keeping an eye on Ben to make sure he was on track. An exercise ball satisfied his constant craving for movement. Because they have such a poor connection with their body, children with dyspraxia have a higher need to move, shift position, and relieve the stress of the conscious and unconscious effort it takes to accomplish the tasks and activities most people take for granted.

The fortuitous revolution in technology that allowed a nine year old to do much of his class work on a portable computer should have made things easier. But few of his teachers ever had the time to learn the educational software that would have helped to integrate him. He hated being the only child who needed a computer. And even with the computer, eroding the cognitive writing block that first started with his intense dislike of all things paper and pencil is still a work in progress.

I was advised to focus less on developing his fine motor skills, and work instead on the gross motor skills. “It’s all the same circuit” another OT explained. “If you improve the gross motor skills, the fine motor skills will benefit; and it’s easier to get boys to work on that.” We joined Gym n’ Eau a Sunday afternoon activity group for kids with learning disorders, where young OTs in training worked with small groups in the pool and gymnasium. Eventually we moved on from that to a good neighborhood Tae Kwon Do school. There he got his athletic skills up to average, which gave him the confidence to persevere on the school handball team.

The “circuit” the OT was talking about, I later discovered, was the basal ganglia, the home of the ventral striatum, the motherboard transmitter of dopamine, the feel good brain glue that rewards learning and mastery. Though there is no consensus in neurology as to where the origins of developmental dyspraxia lie, there is a strong hypothesis that it correlates with defects there. I found that strong dopamine generating activities, like running, significantly improved his focus. So we started signing up for 5Ks, and now have a hefty rack of participation medals.

Still, the morning problem remains chronic. This is probably because on my worst days I am forced to admit that I suffer from, if not dyspraxia, something extremely similar. I’ve always been organization challenged. A slob, some say. I have a callous on my third finger as big as a knuckle from where I grip my pens too hard. And I’m still hacking my way out of my own history of chronic underachievement, depression and crippling anxiety. My son and I are like a Chinese box of chaos within chaos. In so many ways I feel like I am the worst person for him to spend his formative years with. I struggle to provide him with the kind of environment that might cue a more coordinated life. And I know I am far more forgiving of his impulsivity than society will ever be.

My hope for him, mostly, is that he can learn to forgive himself for all the things he can’t control; and that he manages sometimes to charm the world with the things I see. An insatiable love and need for fun. A warm, infectious giggle that could melt an iceberg. Despite his coordination problems, he’s a great dancer with an innate jazzy musicality that emerges mostly when he’s not being required to follow anybody else’s plan. And though he doesn’t know this, or believe me when I tell him, he’s turning handsome. At the same time, I try not to overplay that hope. Charm and good looks can be as dangerous as they are adaptive. Especially if you have a neurological bias towards wandering astray.

On our worst days I’m paralyzed with fear for both of us. It’s all I can do to muster up the stamina to stay present, to breathe, to hope the calm will bleed through the cracks and surround us both in cool negative space. To be like that optical illusion with the vase that becomes two faces, once you become conscious of the background. If I stay still, we are no longer broken containers, disorders, and abnormalities. We are just reasonably equivalent silhouettes. If I keep my attention focused on what little power has not spilled out, maybe, through osmosis, he’ll turn his attention towards the other sock.

Then there are the other days, still rare for now, but every day I set my aim for more.

On those days, it all lines up. The perseverance, energy and power it takes to overcome a perpetually uncoordinated body coalesces into something greater than its maladaptive parts. This something flows fluid and unobstructed into the world, but is solid enough that we can use it to hoist ourselves up. From there we see the big picture. From there we see a world that is vast, but manageable. On those days our fears, frustrations and disappointments, abundant as they are, swim tiny below us.

On those days, we eat fish.

This essay first appeared in  Carte Blanche, the literary journal of The Quebec Writer’s Federation.