The blame game

By Louise Kinross This morning I woke up with a sense of dread. My chest felt like an aching black bruise. I'd read this piece in The New York Times Magazine about pregnant women and anti-depressants last night.  Somewhere between my reading and the hours I'd spent asleep a thought had taken root in my mind: Maybe I caused my son's genetic condition. And now I was gripped with terror. I had to get up and reread this piece I wrote a few...

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First steps for a boy attached to an oxygen tank

By Louise Kinross A couple of weeks ago I got to meet the most adorable child you see above. His name is Branko, and he's almost four, and his mom Jennifer Philp Zakic had written this exquisite piece for BLOOM about having another child after Branko was born with a rare genetic condition. Jennifer called me from the lobby at Holland Bloorview to let me know that Branko was in the rehab gym on the second floor taking his first steps in physio.  So...

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Why I don't believe 'disabled' dolls invoke pity

By Louise Kinross I was so psyched when I heard that British toy company Makies was creating dolls with disabilities and differences, like a birthmark on the face, in response to the #ToyLikeMe campaign run by parents of kids with disabilities. So when I saw this New York Post piece by Kirsten Fleming criticizing the move, I was puzzled. Kirsten writes that she has a "massive birthmark" on the left side of her face. Growing up with a doll...

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Could special-needs parenting 'stress' be good?

By Louise Kinross There’s been so much research recently about how chronic stress puts parents of kids with disabilities at greater risk of physical and mental health problems, including the suggestion that it can cause us to age faster.That’s always made me feel pessimistic and kind of doomed. So when I was sitting on a rotary bike at the club yesterday and saw an interview with the author of The Upside of Stress: Why Stress Is Good...

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Sisters: 'Look at me, I'm disabled too!'

By Jessica GeboersWhen I was a child doing physical therapy at Grandview, my younger sister Avery climbed into a nearby hand-bike and began riding around the room calling out, “Look at me, I’m disabled too!” She wasn’t trying to be offensive or insinuating that I, somehow, had it better; she only wanted to fit in and have fun like me.I often ask my mother what she thinks BLOOM readers may be interested in reading about. In addition to her own...

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How to rock Miami Beach in a power wheelchair

By Louise KinrossIn February, Maria Tassou did something she’d never done before. She flew to Miami Beach with a friend to hang out at the ocean. Maria, who is a Toronto real-estate lease administrator, had never travelled without her family. That’s because Maria has Arthrogryposis, a condition that causes stiff joints and weak muscles. She can’t propel herself over distances in a manual wheelchair or carry luggage. The places she’d travelled...

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How a disability ramp made one little girl's day

By Louise Kinross Yesterday on the Danforth I saw a toddler with mini ponytails sprouting out of her head. She looked like she'd just learned to walk. She stopped in front of one of the StopGap ramps that dot the Toronto street, allowing those in wheelchairs or strollers to get up over the single-step storefronts (See our story on Luke Anderson, the man behind the StopGamp ramps). She toddled up the apple-red ramp, got to the top, produced an...

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What does a 'blind' photographer see?

By Louise Kinross When Mark Nicol was a kid he picked up his dad’s camera a couple of times but was frustrated because he couldn’t see through the viewfinder.That’s because he was born with vision loss: he sees one-tenth the resolution of what someone with regular vision sees.So it may be surprising to learn that today Mark’s passion is photography. And his images are part of an exhibit called The Mind’s Eye at the Canadian National Institute...

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Could surgeons benefit from a coach like athletes do?

By Louise Kinross I just read a fascinating review of the new book Do No Harm, a memoir by one of Britain's top neurosurgeons Dr. Henry Marsh.  New York Times reviewer Michiko Kakutani describes it as "an extraordinarily intimate, compassionate and sometimes frightening understanding of his vocation." This quote from the book stands out: "It's one of the painful truths about neurosurgery that you only get good at doing the really...

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How to keep climbing with a medically complex child

By Jade Biesinger My name is Jade and I live in England at the other side of the “pond” with my husband and four lovely children. Heni, one of our daughters, has Trisomy 18. Heni can’t walk, talk or do everyday tasks and is classified as having profound and multiple learning disorders. She wasn’t expected to live beyond birth but here we are—almost 20 years later—still heading in to uncharted territory. I've often described our experience...

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BLOOM media roundup

Here are some recent stories related to disability, parenting and health. If we missed a good one, please post in the comments. Thanks! A life in motion, stopped cold The New York Times Video about a Brazilian who learns she's qualified for aerial skiing in the next Winter Olympics from an ICU bed after breaking her neck in a skiing accident. Social media campaign aims to increase profile of Canadian research The Globe and Mail Research2Reality is...

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A reading from author Julie Keon

Here's author Julie Keon reading from her new book What I Would Tell You: One Mother's Adventure with Medical Fragility about raising her daughter Meredith, who was born with severe brain injury. The book, targeted to parents and professionals, can be purchased on Julie's websit...

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What Barbara Turnbull said about rehab and grief

By Louise Kinross In 1983 Barbara Turnbull was shot during a robbery at a convenience store where she was working a night-shift as a Grade 13 student. Last Sunday, The Toronto Star, where she worked as a reporter, wrote that she had died at age 50 as a result of complications from pneumonia. Barbara gave a fabulous talk at Holland Bloorview in 2002 about her 18 months in rehab and how she learned to navigate the world with quadriplegia...

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Finnish punk band rocks disability awareness at Eurovision

PKN is a punk band that's a little different. The four men are middle-aged, Finnish, and have Down syndrome and autism. Next Tuesday they're competing in Vienna in the Eurovision Song Contest. The group was chosen to represent Finland by popular vote. PKN has toured in the United States, United Kingdom, Germany, Norway, Canada and the Netherlands. They were the focus of a documentary called Punk Syndrome in 2012. Their first hit,...

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To our nurses: You are the heart of rehab

By Louise Kinross When your child is an inpatient at Holland Bloorview, the staff you will come to rely on most are the nurses on your unit.When your child moans in pain after his body cast is removed, because his muscles are in spasm, it will be a nurse who sits with both of you, remaining remarkably calm as you hyperventilate, and problem-solving to figure out a solution. Our nurses are highly skilled in caring for children with complicated...

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Dear doctor, therapist, nurse and teacher

By Louise Kinross I was delighted and honoured to interview Julie Keon, author of What I Would Tell You, on Saturday at Holland Bloorview.Julie’s book is about raising her daughter Meredith, now 11, who was born with severe brain damage. What’s unique about this memoir is that it’s structured around deep practical truths Julie has learned that will improve understanding between parents of kids with disabilities and...

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Wesley goes for a spin

Wesley has been an inpatient at Holland Bloorview twice, following treatment for a rare form of cancer. Read about why seeing Wesley ride off on this specially-fitted tricycle meant so much to his mom Laura Ritchie. And in case you missed it, check out The Toronto Star's special section on families at SickKids which came out this week. Author Julie Keon is launching her new book What I Would Tell You: One Mother's Adventure with Medical...

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Grief? A friend? Don't miss this interview

I am delighted to be interviewing Julie Keon (right) about her book What I Would Tell You this Saturday May 9 at Holland Bloorview. You can still RSVP to the event here. Julie’s book is about raising her daughter Meredith (above with dad Tim), who was born with severe brain damage. I’ve read many memoirs about parenting a child with disabilities, but this is the first one that’s packed with deep, practical truths. When you read What I Would...

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A new son, a new path

In case you missed the cover story of our last print issue, it's about one mom's journey to accepting her son's complex medical needs given disability is viewed as a taboo in her home country. And in talking about complex needs, there's an excellent piece by a parent in the British Medical Journal called Never say never about our child. It tells the story of a family raising a child with Trisomy 18, and how, when they first received...

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How the tyranny of 'normal' hinders rehab

By Louise KinrossIn 2012, 25 scientists from six countries came to the University of Toronto to talk about new ways of looking at rehabilitation for children and adults. The result is Rethinking Rehabilitation: Theory and Practice, a book co-edited by Holland Bloorview scientist Barbara Gibson.BLOOM: Why is there a need for this book?Barbara Gibson: Much of what we do in rehab is about helping people to thrive in their lives—sometimes as they...

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