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Carolyn Smith says she always knew her daughter, Kate, was different. She was bright, energetic and verbal at an early age. But as a preschooler, she had trouble holding pencils, combing her hair and playing games.
A foray into figure skating ended after Kate would only shuffle her skates along the ice.
So four years ago, when Kate was told she probably has a little-known motor skills disorder called developmental coordination disorder, or DCD, during a research project at her school, Ms. Smith found it a relief.
"We almost fell over," she says of her reaction, and her husband's. "It fit her to a T."
Children with DCD have trouble with basic motor skills most of us take for granted, such as tying a shoelace, bouncing a ball or walking without tripping.
Some DCD children have fine-motor problems with their hands and such skills as writing. Others have gross-motor challenges with activities such as jumping and running. Some children have both.
It is a diagnosis that has nowhere near the name recognition as other conditions affecting children, such as attention deficit disorder or dyslexia. But DCD affects about 5 to 6 per cent of Canadian children, many of them undiagnosed, researchers say.
And it goes far beyond being a little uncoordinated.
"The tipping point is when it begins to interferes with normal things that a child does to be a child, medical scientist John Hay says.
When looking at the skating experience through this lens, Ms. Smith says she realizes that Kate, now 13, "was just making sure she didn't fall down."
Researchers aren't yet clear on what causes the disorder. It is not believed to be genetic, but rather a neurodevelopmental disorder that begins in utero.
The condition tends to show up when children start school at about 4 or 5, and can result in social problems and bullying.
Called "clumsy child syndrome" until 1994, DCD doesn't have the mainstream buzz of other childhood disorders, mostly because there is no real treatment or cure.
Although it is now politically incorrect, "clumsy child syndrome" is very descriptive, says John Cairney, a sociologist and an expert on DCD.
"These kids have difficulty with everyday fundamental skills. They're not clumsy because they're inattentive or goofy."
Actor Daniel Radcliffe's revelation last month that he suffers from dyspraxia, which affects the ability to mimic gestures and which falls under the DCD umbrella, gave the condition a recent boost in recognition.
And Canadian researchers, including Dr. Cairney, are hoping that new work in the area will also shine a spotlight on the disorder. They're looking at the link between DCD and childhood obesity and heart disease in a large longitudinal study of 2,300 students from St. Catharines and the surrounding area.
Of that group, motor proficiency tests have identified 125 children, including Kate Smith, as having DCD characteristics.
Children in this group are now undergoing regular blood lipid tests, body fat measurements, aerobic tests and electrocardiograms to determine their risk of cardiovascular disease.
Previous research has shown that DCD kids are two to three times more likely than other kids to be obese, probably because of their avoidance of sports and other physical activity.
Early findings suggest there is a positive link between DCD and cardiovascular risk factors, according to an abstract published in the current journal of the Canadian Institutes of Health Research, which funds the project.
Team member and epidemiologist Brent Faught says he is used to looking for risk factors underlying a disease.
"But with DCD, we have a disease contributing toward risk factors that will contribute to another disease," he says.
If connected to a life-threatening disease, DCD may become better understood and diagnosed, says Dr. Hay, a professor of community health sciences at Brock University and a member of the team. "That's how we're trying to put the disorder on the map. Cardiovascular disease is sexy."
Experts admit that until then, DCD will probably remain an unsexy diagnosis, because it comes with very little concrete advice.
"It's one thing to tell someone here's what's wrong with them," says Dr. Cairney, a professor of child health at McMaster University. "Their most immediate response is, 'Great. Give me something for it.' But we don't have that pill.' "
Instead, helping those with DCD requires a broad approach, says Dr. Cairney, who took up a new position this month as chairman of the McMaster Family Medicine Professorship in Child Health Research, where his work will draw on family medicine, psychiatry and other health-care fields to find answers for kids with DCD.
Some occupational therapy may help, he says, but emphasizing individual sports in which kids can play at their own pace can also be useful. Classroom fixes may include a little more time for schoolwork, or pages with larger spacing to help with writing and printing.
Without a diagnosis, messy writing, incomplete assignments and poor attendance in physical activities can appear to parents and teachers as evidence a child is careless, unmotivated and lazy.
"If everyone takes a step back and realizes what the child is dealing with every single day, we can change how we approach this child," says Dr. Faught, a professor at Brock University.
Previous research by Dr. Hay found that among 24 children with DCD, every child had failed at least one subject and all but one had dropped out of high school at the age of 16.
"They had no intellectual difficulty. They had no learning disability. I feel for those kids."
And with no evidence that adults grow out of DCD, the consequences can continue to compound. Many adults do learn to mask their problems and excel at verbal skills, finding success in careers such as acting and radio announcing.
But Ms. Smith hopes her daughter will be able to do more than mask her DCD. Although she is not fond of labels, Ms. Smith says that knowing more about Kate's motor problems helps the family focus on the things she can do well. (Although the family has moved to Mississauga, Kate continues to participate in the study.) "This has been a very helpful piece of information for us," she says.
Instead of worrying about not excelling in track and field, for instance, Kate is enjoying more individual pursuits such as swimming. She has signed up for fitness classes this fall. And Ms. Smith may ask for some assistance at school if Kate needs it.
There was no trauma in learning Kate had DCD, she says.
"The trauma is when she trips at school."
Signs of DCD
Clues your child may have developmental coordination disorder:
Sits out of playground sports
Has difficulty catching, bouncing or kicking a ball
Has trouble with balance
Leaves gym clothes at home on a regular basis
Has trouble writing and printing
Fails to finish tests on time
Has trouble tying shoelaces and buttoning clothing
Can't get dressed easily
Spills drinks and drops things
Tralee Pearce
