The zookeeper

I haven't asked Ben what he wants 'to be' when he grows up for years. But a story in the new BLOOM magazine woke me up. It's an interview with author Amy Baskin about the dearth of possibilities for young adults with developmental disabilities. When they age out of high school at 21, they're not qualified to do anything, nor are they entitled to any ongoing education or daily activity. There are limited traditional options,...

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iPad app recommendations

I'd love to hear your suggestions for iPad educational apps. Anything related to reading, phonics, writing stories or basic math. Thank...

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Our link

I was upstairs in the hospital and saw a shirt decorated by a child. It said: “We are all connected by wires. Don’t disable mine.” It made me think of the link I have to all of you, spread out across the world like Christmas cards on a string, people I never would have known if it weren’t for the blogosphere. And it got me thinking about how much strength I’ve taken from our online community. When Ben had his surgeries in April,...

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Acceptance = book's message

Arlene has plans, Big, Big Plans. She's going to be the youngest ever student government officer in Greenwood Elementary history. She'll be the biggest thing to hit little Rhode Island since the invention of coffee milk. Sure, she wears purple leg braces and has a weird-sounding disease called Charcot-Marie-Tooth, but that won't stop her. Onward she marches, bending rules and blasting stereotypes in an effort to win no matter...

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When there isn't a happy ending

I’ve been sad recently. It started when I began to look at how to revise Ben’s communication system on his iPod. I got to the section called “Friends” and realized it was a struggle to think of a single kid I could legitimately put in there. You know, a friend that Ben sees on a regular basis. That led me to recall the day almost 17 years ago when Ben was three days old and we met geneticists who told us he had a good chance of having a syndrome....

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A cameo appearance at the school assembly

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'You are the expert on your child'

I met a remarkable woman six years ago. Her name was Ann Hovey (centre) and she was living at Holland Bloorview while her daughter Cailyn, 3 (in photo left, now 9), underwent inpatient rehab following removal of a brain tumour. And if that wasn't demanding enough, Ann, a single parent, had her baby Lauryn (right, now 6) with her. A few months ago I was delighted to see Ann again at Holland Bloorview. She was speaking to staff...

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'I've learned not to take anything for granted'

The December issue of BLOOM goes to print this week and includes a series of stories about parents raising more than one child with a disability. I wanted to share with you this interview with Dana Florence of Toronto. Dana's triplets were born three-and-a-half months premature. After months in hospital, where they survived complications, Brody, Taylor and Cole finally came home. At 10 months old they were diagnosed with cerebral...

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Everyday happenings

Last night Ben was afraid there was a monster under the bed. He wanted me to check. He’s had a lot of bad dreams. “Night dream” he signed last night, for 'nightmare.' We’ve been watching the Harry Potter series of movies so perhaps his imagination is full of three-headed dogs and ghosts who inhabit paintings. Ben wants to play the guitar. I think a regular guitar would be much too heavy, but perhaps a ukelele? His school sent home...

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Rachel Coleman: 'Live big and live loud'

Rachel Coleman (photo right) is the founder of Signing Time, a company that produces sign-language videos for children, and mom to daughters Laura, Leah and Lucy. Leah, 14 (top of photo), was diagnosed with a profound hearing loss at age one, and Lucy, 10 (centre), was diagnosed with spina bifida in utero and cerebral palsy at nine months. I interviewed Rachel about parenting two children with disabilities and...

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The Father's Network

I found an exquisite American website devoted to fathers of children with chronic illness and developmental disabilities.  It's called The Father's Network. The content is powerful -- although many of the stories were written in the 1990s. This would be a fabulous place for the dad of a newly-diagnosed child to gain support and understanding and perspective. Check out the numerous stories in the archives. I've already looked...

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School update

Just a quick update from my team meeting at the school this morning. It was confirmed that the focus of Ben's class is life skills, independence and communication skills. This, apparently, is so that my son can be a "productive, working member of society." However, I don't think my son wants what they have in mind for future work -- packaging or sorting or assembling or whatever "piecemeal" work is. They don't do academic skills. They "incorporate literacy" into things like teaching the students to read a recipe. "Why does Ben...

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A winter heart

I recently began reading a blog by the Gort family -- who have two children with special needs. Gina, the mother, wrote a fascinating post about taking a hiatus of a month to re-energize herself from the heavy caregiving demands. Her husband Tim was going to take over care of their children -- including Gwen, who is in hospital following an orthopedic surgery to straighten her back. I was looking forward to hearing all about Gina's...

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Happy Persons with Disabilities Day

Happy International Day of Persons with Disabilities! This morning I spoke with an educational consultant/advocate about my concerns re Ben's high-school placement. He gave me hope that it was worth fighting for a setting that meets Ben's needs. If we're told, as we have been so many times before, "there are no options," then the law says that the board has to "create" something. I have a team meeting at the school on...

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My son, the superhero

By Susan Taylor A good friend of ours, Kirk, is a closet, superhero fanatic and cartoonist. His son and my son Jacob are good friends. When Jacob, 6, needed a new pair of ankle-foot orthotics (AFOs), he had a hard time deciding what design he'd like imprinted on them. His last two pairs had featured Superman and Spiderman, but this time he wanted something different. “How about Super Jacob?” Kirk suggested. Jacob thought this...

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'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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