By Stan Ashbee
Sunny South News
Dyspraxia is a developmental co-ordination disorder, which is also called the hidden disability. Megan Van Diemen, who is seven years old, is in Grade 1 at St. Catherine’s School in Picture Butte.
This Friday, Megan’s mom Jose is organizing an awareness event at the school beginning at 8:30 a.m.
According to Van Diemen, dyspraxia is also know as the hidden disability for two reasons — one, you can’t see it and two, it’s uncommon and people are unaware of the disorder. She added it afflicts both children and adults and is a life-long diagnosis.
During the awareness event there will be activities including a photo booth and for the younger grades information to show students how difficult everyday tasks can be for Megan. One activity will be students attempting to tie shoe laces with their fingers taped together, which Van Diemen noted, is a skill her daughter hasn’t mastered, as of yet. There will also be a school-wide presentation plus older students will take part in age appropriate activities afterwards.
“Megan is an amazing girl that has a heart of gold. She needs people to be aware of dyspraxia, so she can live a life that hopefully will be as bully-free as possible and as successful as possible,” Van Diemen stated, in a recent media release in regards to the upcoming awareness day.
Van Diemen noted there is no foundation in Canada for the disorder.
“There are foundations in the United Kingdom, the United States and Ireland. I’m trying to raise some awareness in her school,” she said, adding she has also started a Facebook page to continue raising awareness about the disorder on a local and global scale. Check out http://www.facebook.com/dyspraxiacanada for more info.
At a young age Megan had slow speech development, as Jose took her daughter into the health unit to ask about the concern. According to Van Diemen, her daughter also had slower mobility development, as well.
“That’s when we found out there were more delays than just the speech. From that point, I started to get an early childhood educator involved. I got physiotherapy, occupational therapy, and a speech therapist involved and then a pediatrician,” she explained.
When Megan was little, Van Diemen said, she wouldn’t communicate but would scream. “It was hours at a time because she couldn’t communicate.”
Megan’s mobility and many other developments growing up were slower but she has progressed.
“She steadily progresses but it needs a lot of therapy. And that’s what she will need life-long. Everything will take her so much longer to get,” said Van Diemen, adding it’s definitely gross motor skills that have been delayed and fine motor skills such as writing.
“She finally now, is able to write her name. Before, it was only tracing.”
The one thing Van Diemen would like other people to know about dyspraxia is those diagnosed with the disorder are very inconsistent.
“When you think they can do something and do it once — it does not mean they can do it twice. That’s frustrating for everybody. A lot of people don’t understand that because they think, ‘you’ve done it once, they can do it again.’ They definitely can’t do that,” said the mother of four.
Intellectually, Van Diemen said, those with the disorder can have some delays and cognitive and sensory issues.
“Her pain tolerance is extremely high. What this diagnosis is — it’s a developmental co-ordination disorder. She has difficulty co-ordinating everything and that’s why it involves everything. That’s why it’s the cognitive, the speech — she just has difficulities getting it from her brain to her mouth and out, gross motor, and fine motor,” the mom explained, adding that’s why Megan is extremely bruised all the time because she will bump into things.
Van Diemen said she has heard dyspraxia is on the autism spectrum and there are other names for the disorder including perceptual motor disorder. “There’s a bunch of different names but the most common one — it used to be in the DCM, which is the diagnostic book physician’s used, and developmental co-ordination was in there. But, as of recently, that has been removed. It’s back to dyspraxia,” she said.
According to Van Diemen, she doesn’t have any statistics in regards to the disorder for Canada but she said she has heard in the United Kingdom there’s about 10 per cent and two-per-cent that have it severe. “And, it’s more common in boys than it is in girls.”
As Megan grows up, Van Diemen said, the only thing someone with the disorder can do is continuous therapy.
“Because they need so much to be repeated, they need repetitive, they need constant therapy — all the time. They can accomplish things but it takes a long, long time. She is able to walk, she’s able to run, she holds a pen now and can write her name but she should be in Grade 2 right now. She’s done Kindergarten and the Grade 1 in the afternoon and now she’s doing Grade 1. We transitioned her that way and it went really, really well,” said the proud mom.
Van Diemen added many people may consider children with the disorder as being bad because they’re inconsistent.
“Megan, however, is a sweetheart. She is such a sweet girl. She can teach anyone and has taught me many lessons. She’s truly a blessing,” said Van Diemen.