Feeling judged as a parent? Read this

By Jessica Geboers Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process. It’s Ann's most personal book to date (see above with her husband and four children). Each of Ann’s children has struggled with something, including bipolar...

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Which hope is false? Which is real?

Yesterday I read a fascinating feature in WIRED called An Alternative-Medicine Believer’s Journey Back to Science.It chronicles the story of Jim and Louise Laidler—two American doctors whose two sons were diagnosed with autism. For a number of years they threw themselves into pursuing alternative therapies for their boys: supplements, a gluten- and casein-free diet and IV infusions of secretin. Jim became an expert and speaker on chelation, a...

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Want to know how dads feel? Watch this film

By Louise Kinross It's not often you hear fathers of children with disabilities talk candidly about their child's diagnosis and how they reacted emotionally to it. But in Do It Differently, Scott Phillips sought out four dads with kids with autism and created an environment, maybe because it was dad-to-dad (Scott also has a child with autism), where they felt comfortable. The result is an exquisite, hour-long documentary where dads bare their souls. "We said 'why us,' as well as 'what did we do?'" recounts one of them. This is...

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Is riding a wheelchair scary or exhilarating?

By Louise Kinross When you hear the word ‘wheelchair,’ what comes to mind?Is it scary and confining, or liberating, fun and even glamorous?Yesterday I read disability activist Emily Ladau’s piece in The Huffington Post about a public service campaign called Beware The Chair. To raise awareness of how osteoporosis weakens bones, making them susceptible to breaks, an empty, remote-controlled wheelchair chases people down in a mall and on the street,...

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Expecting death, Gabe prepares for life

By Megan JonesLuke Terrell tells his friend Gabe Weil’s story like this: By the time he reached his mid-20s, Gabe (above second from right) thought he only had a few more years to live. Diagnosed with Duchenne muscular dystrophy in his childhood, the St. Louis resident had always been told that he could expect to live until the age of 25—if he was lucky. By 10, he needed a wheelchair for mobility. And when he hit his teens, his physical state...

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Schwartz Rounds uncover the heart of healthcare

By Louise Kinross As a parent, how do you define compassionate care? Have you ever broken down when describing something troubling about your child and their care?If so, what reaction from the clinician made you, as a parent, feel cared for?Earlier this month Holland Bloorview was the first hospital in Canada to partner with Boston-based Schwartz Center for Compassionate Healthcare. The Schwartz Center is a non-profit organization that’s developed...

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Dutch student heads home with new vision of advocacy

By Megan Jones In February, 23-year-old occupational therapy student Anna-Lena Burdick arrived in Toronto from the Netherlands for a 14-week study placement at Holland Bloorview. While here she says her perspective on working with children with disabilities shifted dramatically. She learned about the concept of advocacy, and the role health professionals can take in being a voice for their clients. In the Netherlands the idea was one she’d...

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How to hear what the heart is saying

By Louise KinrossLast year at an American conference on patient/clinician communication, Holland Bloorview family support specialist Lorraine Thomas participated in a simulation. An actor playing the part of a patient was lying in a hospital bed in his robe. He had a number of scripts for clinical interactions and randomly picked people in Lorraine’s group—including doctors and nurses—to role play the part of the health professional. “With...

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I want a doll (or toy) like me

Here are some example of dolls and stuffies adapted to include stomach tubes, braces, wheelchairs and more. A number of you sent photos in. We couldn't include them all, but hopefully these will give you some ideas for your own dolls and toy...

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Four dads on raising kids with autism

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How a tattoo made my disability cool

By Tim Rose Hi there! My name’s Tim and I have a disability. But this article is not just about living with that disability, or about how it impacts my life. It's about the importance of celebrating disability and how it has led to very good things for me. It's also about some ink that I wear with pride on my arm. Before going further, let me introduce myself more fully. I was fortunate enough to be born with cerebral palsy spastic quadriplegia....

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A sister asks 'Do you see me?'

By Cristina Breshears Dear Mom and Dad: Even though I was born into the chaotic aftermath of my big sister’s diagnosis, I wasn’t born understanding it. I saw how difficult things were for you: how hard you worked, how hard she worked. I saw the different people come to our house to help. I saw your tears and heard your prayers. But I couldn’t know what was wrong. I didn’t know what to expect or what I should do. It was my everyday...

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Beauty exposed

“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.” By Louise Kinross Photographer Steve Kean remembers sitting, as a child, on a stretcher, “nearly nude, and being talked about as if I wasn’t there by this doctor and that doctor. There was an ampitheatre with tiered...

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Note to self: Protect my mind

By Louise KinrossA new study shows that parenting kids with disabilities over a long period of time jeopardizes cognitive function—especially memory—in mothers, but not in fathers, due to chronic stress. The study—published in the Journals of Gerontology: Series B last month—used a large U.S. survey of parents from 2004 to 2006 to compare 128 parents raising disabled kids with 512 parents whose children did not have disabilities. The children...

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How a family that shares a genetic condition creates a vision

By Kenneth Springer I’ve been pondering what to write for BLOOM given that I’m a parent with a disability and have two children who have inherited the condition from me. It’s not often a parent can tell their child that they completely understand what it’s like to have their diagnosis and mean it. After all—unless you share the condition, how would you know?
When told your child “isn’t normal,” parents may react differently, whether it’s shame...

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