‘Walker, my teacher’

I read five chapters of The Boy in the Moon last night – a memoir by journalist Ian Brown about caring for his son Walker, who has a rare genetic condition. Walker, 13, can’t eat or speak, wears diapers, punches his head mercilessly and cries for no known reason for hours.The book is exquisitely written – a labour of love. Brown describes the relentless physical care, sleep deprivation and inability to understand a child or soothe his pain that...

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Friendless, forever?

Jennifer’s post about how traditional friendships are not possible for her son Owen got under my skin, manifesting itself in a big knot about four inches down my spine.I’m familiar with that knot, and it tends to flare up when the Momma bear in me is fighting an injustice that I know to be reality, but which I can’t accept.As Elizabeth notes in her comment, there’s something taboo about the idea that disabilities could render a child incapable of...

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'Owen doesn't have a single friend'

Can children with severe disabilities and limited communication have friends? As parents, it goes without saying that we want our children to have friends, but Jennifer Johannesen has found this isn’t in the realm of reality for her son Owen, 11 (see right of photo above). Owen is deaf, non-verbal, non-ambulatory and requires full support for all aspects of daily living. His brother Angus, 9, is typically developing (at bottom of photo). You can...

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A new voice – and a measure of independence

For 27 years, Dung Le’s mother has been at his side. That’s because Dung (photo above) has cerebral palsy and can’t speak. His mother Yen is one of the few people who can translate his sounds and gestures. When Bloorview engineering student Negar Memarian first met Dung, he wanted a way to select “A, B, C, or D” so he could answer multiple choice tests on his own. As a business college student, he didn’t like his mother interpreting his answers...

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Breaking windows with my son

Get ready for some beautiful writing. This is a guest blog from David Sexton, pictured above with his adorable one-year-old son. David is a software development manager who lives in Hoboken, New Jersey. In his blog, Scattering Bright, he writes about parenting his son, who has cerebral palsy, and family life with his three-year-old daughter and wife. David's writing has also appeared recently in two guest blogs on the New York Times Motherlode...

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Taking a stand

Isn't this the cutest picture of my son Ben in hospital 11 years ago? Ever since he was an infant, he's had a tuft of hair that insists on sticking up in the centre of his head. Even when in pain, his Richard Scarry videos could elicit a smile. This is a personal essay I wrote about how Ben and his journey changed me, and gave me courage I didn't know I had.How has your child changed you? Louise Taking a stand By Louise Kinross At last, he...

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When children hurt themselves

In the Summer 2008 issue of BLOOM we ran an article by educator and social worker Felicia Jervis about compassionate approaches to children with autism and other developmental disabilities who self-injure. This summer we printed a response from Dr. Louise LaRose, a behaviour analyst, who presented a behavioural approach to reducing self-harming behaviour. We know child self-injury is a painful challenge for many parents, and want to share two...

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