'Would you like to have Down syndrome?'

By Amy Julia Becker Our daughter Penny (above left) was born with Down syndrome almost five years ago. After the initial shock of her diagnosis wore off, we began to feel grateful – privileged even – to have a child with an extra 21st chromosome. Penny introduced us to a world of special needs and special people. She opened our hearts to a wider understanding of what it means to be human and what it means to see every human...

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Forever 14

I was facilitating a workshop for the Ontario Association of Children's Rehabilitation Services a few weeks ago and I met a warm, wise woman named Mary Herlick. Mary shared with the group that she had lost her son Eddie (above) last year. Mary is still involved in trying to improve life for other families of children with disabilities. I asked her to share with us coping strategies for parents who have lost...

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Dark clouds clearing

I wrote a while ago about my concerns about Ben's school placement. Thursday was our teacher/parent meeting and I left in tears understanding that Ben's program was 100 per cent life skills. In the morning Ben has gym and art, and in the afternoon he has 'math' -- which is working on a box that might contain flashlights to be put together, or beads to be sequenced on a string in a certain way -- and then social skills, which is a cooking class...

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Technology: Hype or hope?

I listened to a fascinating parent panel hosted at the Bloorview Research Symposium Tuesday. It was called Assistive Technology at the Dawn of the 21st Century: Juxtaposition of Hype, Reality and Hope. It was noted that 25,000 children in Ontario lack technology that would allow them to communicate or access a computer. Holland Bloorview biomedical engineer Tom Chau (above left) moderated a discussion between four parents whose...

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Wanted: an integrated gym

This post has nothing to do with kayaking, but with the expression on Ben’s face (right). This is how Ben looks every time I pick him up after his weekly physiotherapy session at Holland Bloorview. He’s ecstatic and chipper and obviously coming off of a workout “high.” He doesn’t get a lot of exercise during the week, but this hour of walking on the treadmill, climbing stairs and tossing a ball in the gym leaves him in a sweat. I can only imagine...

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Fairweather friends

Fairweather friends By Lisa Young They say that friends come and go in our lives. We hope they’ll be there for the difficult times, but that isn’t always the case. This story is about a friendship that could not survive the birth of my child with special needs. When I found out I was pregnant with my first child, I was thrilled. I couldn’t wait to tell my family and friends the great news. Everything seemed to be going well until...

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Caregiver health affects us all, researchers say

Many of you asked for more information about the national roundtable on the health of parents of kids with disabilities last week. At the meeting in Ottawa we heard an overview of research to date that’s been funded by the Canadian Institutes of Health Research. This research was conducted by Jamie Brehaut, Dafna Kohen, Peter Rosenbaum, Lucy Lach and their colleagues. Following is a summary provided by Jamie. Thanks Jamie! Caregiver...

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Walker's gift

Canadian journalist Ian Brown spoke at the National Roundtable on Caregiver Health in Ottawa Friday. Ian is the author of The Boy in the Moon, an award-winning memoir of his family's experiences raising son Walker, who has a rare genetic condition. Walker, 14, can't eat or speak, wears diapers and punches his head mercilessly. Ian spoke about a health system that's so specialized, paper-based and unwieldy that it adds a whole new...

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Inclusion is 'about the environment, not the kid'

Dan Habib (second from right) is a photojournalist and creator of Including Samuel, a documentary that chronicles his family’s efforts to include his son Samuel (second from left), who has cerebral palsy, in every part of their lives. The film also captures the experiences of four other children and adults with disabilities and their families. I talked with Dan about what he learned about inclusion during filming. And on a related...

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A dentist with a different approach

A dentist with a different approach By Marcy White (above with Jacob) I took my eight-year-old son to the dentist. His appointment was the last one of the day, at 3:30. From the moment I woke up, I felt a ball of dread bouncing around in my stomach. Taking Jacob to any appointment is an ordeal. Physically, it is difficult for me to carry him into the car. There is a lot to remember to bring with us, including bibs, a change...

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'To be seen and loved'

When my son Ben was in hospital here earlier this year, Owen Turney (right) came for a visit. I got to know Owen's mom Jennifer through Holland Bloorview years ago, and it was through Jennifer that we met Sallyanne, who works with Ben. Sallyanne spent a lot of time with Ben in hospital. I'll never forget the look of mischief and merriment on Owen's face the morning the two boys surprised me in my office a few months ago. Owen was known for...

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