A deadly disease takes a family captive

By Marcy White I hate Pelizaeus-Merzbacher disease (PMD). On March 21, 2003, I was told that PMD was the cause of my son Jacob’s many medical problems. I’ve hated the disease ever since. When I learned that it is degenerative and would continue to burrow into my son’s brain and nervous system like a voracious mole, until it ate away his abilities to think, to breathe and to live, I detested PMD. And when I witnessed my son on a ventilator two...

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Why your kid's sniffles make me sweat

By Jennifer Philp ZakicI have a confession: whenever I enter a new place, I scan the room for signs of infection. I look for runny noses, speculate about whether the cough I hear is a “real” cough, and ask people “Do you currently have, or are you getting over, a respiratory virus?” When I walk into a grocery store, I cringe at the thought of using a cart. I have learned to take Lysol wipes with me everywhere, and this eases my concerns, albeit...

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Want to know what kids think? Just ask

By Louise Kinross Tommy (in orange shirt) and Martin Tobon (foreground) are nine-year-old twins.Martin likes building Legos. Tommy prefers to swim. But he doesn’t like wearing goggles because “fish don’t wear goggles.”The boys are just as specific about what they like and don’t like about Holland Bloorview, Canada’s largest children’s rehabilitation hospital.“I don’t like the way they put the basketball hoop in the gym,” Tommy says. He speaks...

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How many red flags on mental health do we need?

By Louise Kinross Very high stress levels in 17 per cent of Canadians who care for a child or adult with a health condition or disability was flagged as a significant concern in a report on mental health indicators by the Mental Health Commission of Canada (see page 8) yesterday. There isn't anything new or surprising about this. In fact, I'm surprised that the number is so low. There's more than a decade of research showing parents of kids...

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A brother's story fuels autism researcher

By Louise Kinross “I sit here and think ‘How did I get so lucky?’” says Susan Day Fragiadakis, a research assistant in Holland Bloorview’s Autism Research Centre. Susan recruits and assesses children and youth and their families for a study that aims to link genetic changes with specific types of autism and other neurodevelopmental disorders like Down syndrome. Susan is part of a Province of Ontario Neurodevelopmental Disorders (POND) Network...

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Slip slidin' away

By Louise Kinross Yikes. The Canadian winter is treacherous for youth who use wheelchairs or walkers finds a Holland Bloorview study published in Disability and Rehabilitation last month. Researchers interviewed 12 youth aged 15 to 22 who use walkers and power or manual wheelchairs about the challenges they face getting around in winter. Their comments paint a stark picture: “In the slush and snow my walker seizes up” explains one participant,...

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Acceptance: What does it mean to you?

There is a very cool group called 3E Love Network that promotes acceptance of disability. Today is their International Day of Acceptance. The group was founded by siblings Stevie and Annie Hopkins, two young adults with spinal muscular atrophy. Their message: "tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals, who loves life, and who will not be without a voice...

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BLOOM media roundup

Girl advocate for disabled American Girl doll to write book Kickstarter Last year Melissa Shang, then 10 (above), got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability. The company hasn't. BOO! So Melissa, who has a form of muscular dystrophy, is moving on to write a book about a middle-schooler with a disability. You can also hear Melissa and her older sister Eva calling...

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Nick knew how to take the pain away

By Louise Kinross When I first got to know Nick Joachimides (above centre), it was in his role as a nurse educator at Holland Bloorview. Nick was part of a research study to address a growing body of literature that suggested pain was under-recognized and under-treated in children with disabilities. The study aimed to shift the focus from treating pain in our kids to preventing it. This was of great personal interest to me because...

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'How poor are they who have not patience'

By Louise Kinross Patience. It's a quality that doesn't rank high in our competitive, consuming, instant-gratification culture. We want things, and we want them fast. Some families reminded me recently of the importance of patience in raising children with disabilities.The first was Pia Pearce, mother to Kevin Pearce, an American snowboarder expected to win gold at the 2010 Olympics until a crash nearly killed him, severely injuring his brain....

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Israeli military opens training to disabled youth

By Louise Kinross Special in Uniform is a world-first: a four-year training program that prepares youth with disabilities to serve in the Israeli Defence Forces (IDF) alongside their peers. No other nation's military trains people with disabilities for service. A decade ago IDF Lt.-Col Ariel Almog argued it was time to include youth with special needs and began “one by one to take youngsters and train them,” says Yossi Kahana, Special in Uniform...

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Would your kid like to do this?

Wheel Dance is a Canadian non-profit hoping to bring ballroom dancing classes to children with disabilities.“It’s a great physical workout, it’s a social activity, it’s fun and it’s a great confidence booster,” says Dr. Iris Kulbatski, executive director of Wheel Dance.The group currently offers subsidized beginner and advanced ballroom classes to adults with disabilities and a standing partner at an accessible studio in York Region. They’re...

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BLOOM media roundup

Vulgar poster campaign sparks Human Rights Tribunal The Toronto Star Anonymous posters displayed in a Scarborough co-op targeted residents with disabilities. In one case,  a 9-year-old boy with cerebral palsy was described as "a retarded monkey" who "should have been put down when he was born." A group of residents, including the boy's mother, are having their case heard at the Ontario Human Rights Tribunal today. Song...

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Looking up

A year-and-a-half ago Sue Robins (with son Aaron) wrote what's become our most read post: The invisible mom. It was about how moms of kids with disabilities can face the same social exclusion their kids face. Now Sue gives us an update on the steps she's taking to make her family be seen and understood at their local school. Thanks Sue! Louise By Sue Robins When I wrote The invisible mom last year, it hit a sensitive nerve with parents....

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