I've been hoping for too long for the New York Times to run an article about my son's under diagnosed learning disability. So, wow, did my heart ever sink yesterday when I read "Watch How You Hold That Crayon", and saw where they placed this article, The Style and Fashion section.
When he was eight, Ben was diagnosed with visuo-motor dyspraxia, or as as it's more commonly known in North America (when it's known at all), Developmental Co-Ordination Disorder (DCD). When the neurologist who was following Ben for minor epilepsy told me "this will be a problem for the rest of his life," I didn't quite get it at first. From what I could see, my son was only struggling with handwriting. He has a fantastic memory and strong reasoning skills. When he was five he was accepted into the only public school for gifted children in my city.
But he's always detested school, right from kindergarten. Even when he was the first kid in his class to start reading fluently in two languages, and was chomping at the bit to start multiplication. I figured he was just bored. But fortunately his neurologist put him on a waiting list for occupational therapy.
Two years later we finally got an O.T. Until we started working with her, I had no idea how much my son was suffering. It wasn't just that he couldn't write or draw. He couldn't figure out how to space things on a page. He couldn't keep his stuff organized because he just didn't have the same kind of consistent connection with his body and thus the space around him that other people did.
His large motor skills weren't great either. He had good endurance, but his hand eye co-ordination was geeky at best. His posture was poor, so his breath was being cut off whenever he sat at the school desk that was way too high for him. His feet didn't properly reach the floor, so his brain, which didn't have much confidence in his body to begin with, was being flooded with vertigo.
The energy he was trying to put into all the paper, pencil and crayon exercises was exhausting him. And the gap between what his mind could do, and his body wouldn't do, was infuriating and de-moralizing.
Worst of all, for a parent who is a writer, he detested all writing tasks. This was a kid who read the entire Harry Potter series in four months. (Ironically, the celebrity spokesperson for dyspraxia, as the disorder is known in Britain, is Daniel Radcliffe, who suffers from it himself.)
Ben was obviously imaginative and bright. But midway through grade three he insisted that writing projects were impossible because, "I don't have any ideas. I just don't." His body was blocked, and to accomodate that, he was starting to block his mind.
That Ben was normal looking and obviously smart only compounded the problem. The older he got, the more teachers figured he was just lazy and passive agressive. The more impatient they became with him, the more withdrawn he became. It was a vicious circle that was snowballing pretty quickly.
If it weren't for a perceptive doctor, a neuropsychologist, and an entire team of hospital OTs, I would never have been able to convince the schoolboard that he had a genuine problem. And, believe me, if it weren't for Canadian medicare I would never have been able to afford the treatment and continuing intervention that he will always need.
Sure, with a lot of work, he can improve his handwriting. But he'll always struggle to take readable notes, fill out or create charts, express what he understands about geometry, and do the normal paper pencil tasks that kids take for granted. Handwritten essays will always be a massive task. And keeping materials organized will always be a little beyond him no matter how much he works on acquiring de-cluttering skills. Finally, about a month ago, our schoolboard agreed to give him a portable computer for the rest of his scholastic career and assign someone to help his teachers integrate this into his classwork.
The difference between him and the roughly %2 to %10 of children who suffer from this disorder is that he knows about it. And when someone tries to shame him, or judge him for his sloppiness and physical immaturity, he knows that this is their ignorance and not his character defect. So he's far less at risk for the chronic frustration and low self esteem that most dyspraxics suffer from.
And that is the difference between a bright boy who might make it past these nefarious physical, social and emotional hurdles, and the overwhelming number of dyspraxics who end up droping out of school or spend their lives as confused and chronic underachievers.
So why is this in the Fashion and Style section of The New York Times?
Because they've decided that the increase in work being found by OTs is symptomatic of rich people who have too much money to spend on their kids.
I'm not rich, believe me. But from where I'm sitting it looks like awareness of this problem is starting to hit North America, and it's starting first in the places where people can afford to get it treated, and negotiate the accomodations these kids need (which is half the work of an O.T these days).
This is a similar phenomenon to the correlation we see between higher autism rates in middle class neighborhoods. There's not much point in seeking a diagnosis when you can't afford to get it treated, so yes, more middle class kids "have" autism.
The difference is we know about autism. DCD is still pretty far below the radar (probably because kids with co-ordination problems aren't very good at hitting people, which if you remember, was the first symptom of autism to reach the media.)
But the angle the NYTimes chose to give this article is especially ironic on the heels of Judith Warner's recently released book We've Got Issues.
The New York Times columnist believed, like too many people do these days, that a generation of children is being over diagnosed, over drugged and over treated. When Warner started to look at the facts, however, she realized that the vast majority of parents who seek diagnosis and treatment for their kids are actually decent people doing their best to help their kids have a chance at a normal life. There are exceptions, but they are that, exceptions.
More often than not, this snarky attitude towards kids who are being treated for mental disorders and learning disabilities--and towards the fewer and fewer American parents who can actually afford to seek treatment for their kids--is simply ignorant prejudice.
It's time to move past this kind of attitude. Hopefully, we're on our way with kids whose childhood disorders and learning disabilities are now common words: autism, dyslexia and ADD.
I guess the kids who are struggling with DCD will have to wait until the first generation of kids to know about it become old enough to write about it.