Beyond ‘Clumsy’

Diagnosing Developmental Coordination Disorder
by Julia Wolf

I tried not to worry about him. He’d grow out of it. OK, so Daniel struggled with buttons and pencils and scissors—but he used his right hand one day, his left the next. And yes, he did trip and wipe out a lot, but so did some of the other kids his age. He’d met all the early milestones for development. His kindergarten teacher said he was smart, sociable and reading beautifully. It made sense that his hands and feet just needed more time to get it together.

In Grade 1, I ran out of explanations. Daniel tolerated kindergarten but was now balking at going to school every morning. He’d fall asleep in class and on the bus ride home. His teachers reported he was bright, but his printed work was rushed and incomplete. More effort required. But I saw my son slumped at the kitchen table every day after school, exhausted and miserable. He liked his teachers. He wasn’t being bullied. It didn’t add up.

Our doctor agreed, and the rounds of assessments and referrals brought us to Queen Alexandra Centre for Children’s Health in Victoria. I remember the gentleness in the pediatrician’s voice as he explained to Daniel why school was so hard for him. It was the first time I’d ever heard of Developmental Coordination Disorder (DCD).

DCD isn’t in the pediatrician’s standard manual and it isn’t written about in the popular press. The term was first used to replace “clumsy child syndrome” in 1989 in the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association.  Daniel’s principal, teachers and learning assistant had never heard of it either. Add all that up and you’ll understand why parents don’t know about DCD until they receive the diagnosis.

DCD describes motor skills which are delayed or impaired to the extent that a child can’t do the daily tasks he should be able to do given his age and intelligence level. He also struggles at school because of these difficulties. A DCD diagnosis is basically a process of elimination through assessments. Daniel was bright and sociable. There was no evidence of a pervasive developmental disorder, such as autism or Asperger syndrome, or a medical cause for his difficulties, such as cerebral palsy. He was an average, healthy six-year-old who was unusually awkward and unusually frustrated by school.

About six per cent of children have DCD and they tend to be boys. They don’t grow out of it and there is no known cause. Children with DCD don’t present with the same characteristics and behaviours; their motor difficulties can range from mild to severe, they often have other learning disabilities such as ADHD, and some may develop mood disorders.

Daniel is a typical example of why motor skill problems can be overlooked in young children. My first son Julian walked at 9 months, Daniel at 14 months—both within the range of what’s considered “normal” for walking. Children with DCD often meet the early milestones for development, and “he’ll grow out of it” has been—until recently—the standard medical response. Difficulties with motor skills don’t usually get red-flagged until the child is in school and faces daily paper-pencil tasks, self-care needs and quick changes in routine. Even then, the teacher may notice the child’s difficulties and come up with the wrong answer.

DCD is generally diagnosed by a pediatrician, but further assessments outside the doctor’s office help to present a clear picture of the child’s learning needs. An occupational therapist assesses motor skills and recommends supportive strategies for home and school; psycho-educational testing assesses for learning challenges which require support in the classroom. Both services are now publicly delivered through our schools. The problem is that DCD is not provincially recognized on a funding level as a learning disability. Whether a child receives these assessments or not depends on the school district’s budget and the presence of a facility like Queen Alexandra that may share occupational therapy costs.

In our Cowichan Valley district, no hours were available for Daniel’s occupational therapy assessment. The line-up of children waiting for a psycho-educational assessment meant he wasn’t going to get one that year. I wasn’t told when he would—only that he wasn’t a priority. In a 2004 report by the Learning Disabilities Association of Vancouver, almost half of the families with learning-disabled children surveyed gave up the wait and paid $1500 to $2000 for a private assessment. We did too.

Daniel’s psycho-educational assessment showed that he was above average or gifted in verbal intelligence, but consistently below average in non-verbal (visual-spatial) intelligence. That gap spells a learning disability. Until that assessment, I couldn’t understand how Daniel could read Grade 4 books in Grade 1 and recite pages by heart, but miss the change from plus to minus on a math sheet. Numbers, symbols, shapes, graphs—all of these visual cues that aren’t language-based posed decoding challenges to him. When it came to learning times tables, the typical method of copying out tables was pointless. He was so frustrated and tired by the multiple tasks of decoding and copying the equation that he didn’t retain the answer. The psych-ed assessment showed that Daniel’s comprehension and memory improved with auditory cues, so I tried reciting the tables out loud with him, and it worked. When he had to write a sentence for spelling, it was always easier if he came up with it out loud first.

This kind of information is exactly why early diagnosis and assessments are so critical for children with DCD and other learning disabilities. Together, they give parents and teachers a concrete picture of what strategies are needed to help the child succeed and how to create a meaningful Individual Education Plan (IEP). For Daniel, that meant extra time to complete written work, access to word-processing, alternative ways (such as verbally) to present a project, reduced homework on skills he had clearly mastered. Daniel’s IEP gives me the chance to sit down with his teachers twice a year to share information about DCD and how it impacts his learning and behaviour. The best resource I’ve offered them is Children with DCD: At Home and in the Classroom by Cheryl Missuna, an occupational therapist and pioneering DCD specialist with the CanChild Centre for Childhood Disability Research. Missuna’s booklet (available at www.canchild.ca) laid the foundation for Daniel’s first IEP.

Research has consistently shown that children with DCD experience high levels of stress and isolation from their peers. Repeated negative experiences in the classroom and on the playground lead to lowered confidence and self-esteem, and possibly to anxiety and depression. I didn’t see the signs until Grade 3. Daniel stopped eating his lunch at school and didn’t want to play at recess or with his neighbourhood friends. He had trouble falling asleep at night and complained of stomach aches every morning. He was a few months shy of his ninth birthday the night he told me no one understood him and he wanted to die.

Daniel’s depression rocked our entire family. Counselling was the first obvious step, but his anxiety around school was so high I believed he needed more than therapy. I decided to home school him while we got help. Through the Canadian Mental Health Association’s local branch, we were referred to a therapist at the Ministry of Children and Families. At first, Daniel was reluctant to go, but our joint sessions were positive. He soon looked forward to his appointments and asked me to stay in the waiting room while he unloaded his “worry dragons.” We worked on class projects at home, went on long walks with the dogs and picnics at the beach, and baked a lot of cookies. By the last month of school, he was ready to join his classmates and say goodbye to his therapist.

Improved confidence makes all the difference in children with DCD. As positive experiences build, so does their belief that they can succeed. Last year Daniel decided to try skiing. He wiped out a lot and had a blast. He started bass guitar lessons and is now jamming his way through Hendrix and Clapton. This year marked the transition to middle school, a tough move for many children. He’s doing well. Daniel’s experience has given him resilience and an extraordinary sensitivity and compassion. He’s learned that it’s OK to ask for help, and to define himself by his strengths and values, not his disabilities. I can’t think of anything more valuable to his lifelong learning.

Julia Wolf is the mother of two sons and a creative writing student at Vancouver Island University. She is a casual librarian assistant at the Mill Bay Public Library.