Difference vs deviance

Ben took this photo when we were walking on Blue Mountain in Collingwood the other weekend. I thought these notes from a presentation inclusion author Cheryl Jorgensen sent me were food for thought (and I also get how referring to disability as simply a social construct minimizes the experience of parents raising children with significant disability and medical fragility). ...

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To celebrate Zack!

We attended a lovely event at a farm in support of Zack's Dream Room at York Central Hospital today. Loui...

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Gratitude

I'm grateful for some opportunities that I hope will result in a better school placement for Ben next year. I sent information from a number of inclusion experts to our school board and trustee and the superintendent has agreed to a meeting in July to discuss whether Ben could be supported in a regular high school that has a unit for students who are deaf/hard of hearing (but typical academically -- and they are in the mainstream for some classes...

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Learning empathy by looking beyond disabilities

Check out this piece in the NY Times yesterday. Lou...

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Learning to fly

Learning to Fly By Meriah Nichols Sometimes I wonder if parenting a child with a disability -- as a parent with a disability -- is as much about logistics and tools as anything else. That with the right, bright bits of click, it's no more nor less than anything else anyone else would experience. Let me explain myself. I am deaf -- little "d" deaf. This means that I can hear but I have what is called 'cookie bite compressed hearing.'...

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Happy Father's Day!

Check out the Terratrek all-terrain wheelchair we picked up for free from a man giving one away in Georgian Bay on the weekend. Right now it's sized for a large adult, but hopefully we can get it modified. Ben needs it for overnight camp but we weren't able to source one anywhere. D'Arcy googled it and came across an ad from a person who wanted to give one awa...

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Freedom for my daughter

 I'm delighted to share another post with you from a parent member of Holland Bloorview's Family Advisory Committee. Louise Freedom for my daughter My daughter (above) is a fabulous, bright and fun little girl. She was born with athetoid cerebral palsy. She is affected in all limbs, as well as in her speech and overall control and balance. She will be six this summer. Last year we began working with a doctor in a coaching...

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To Kill a Mockingbird -- revisited

When I first visited the segregated high school my son is in, I was told: There will be no reading of To Kill a Mockingbird in this school. The focus would be on practical skills, the guidance counsellor said, like reading road signs. I don't know why, but it bothered me that I was being told my son would never read To Kill a Mockingbird. Oddly, I was an English major and I myself had never read To Kill a Mockingbird. Still,...

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A short review of a dad's memoir

This is a thoughtful dad's perspective on what it's like to have a son with autism. The dad is Joel Yanofsky, a Montreal author and book reviewer. In addition to capturing the joys and frustrations of his relationship with son Jonah, we get a look at the impact of autism on a marriage. "Tantrums had become routine -- for Jonah and me," Joel writes. "He'd cry and rage, and I'd explode. I can't count the number of times I was exiled...

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When people put social norms before humanity

I work with a lovely social worker named Laura. Her husband Keith used to work at the Globe and Mail, with my husband D'Arcy. Keith and Laura have two amazing kids: Connor and Bryson. This weekend the family had a painful experience during what should have been a happy occasion: a night out at a new restaurant. During their meal, a staff person came by to ask the parents to keep their son Bryson quiet. Apparently, patrons at the other tables were complaining. Bryson, 5, has a rare genetic disorder and communicates through "songful,...

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At Uncle Ian's garden

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'It's not what you see, but how you see it'

This is a fascinating piece about Dr. BJ Miller (above), a university student who became a triple amputee after an accident, then went on to become a palliative pain doctor running a hospice in San Francisco. I was struck by this quote about what he's learned since acquiring disability: "It's not what you see, but how you see it." I've written Dr. Miller to ask if he'd share his insights with BLOOM. Loui...

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'He's teaching siblings that they can speak out'

I got excited when I interviewed Nathalie Wendling, mother of Tommy and Melanie (above), this morning, for the June BLOOM magazine. We are going to feature Tommy as a role model! You all responded so positively to the piece we just ran about the family's book: Melanie and Tommy have two pet rats and one syndrome that I couldn't 'not' share this with you. Nathalie touches on key points to consider about the experience of siblings...

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Pick a wish

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On a different path

"It's so hard for him to learn," I told D'Arcy today. I had hoped that Ben could benefit from the Kumon reading books his brother is doing. He did well circling or pointing to the answers with one of them. But today when I tried to get him to do a second book, he couldn't focus and was disinterested. I could hear frustration mount in my voice as I tried to get him to do something he didn't want to do. I felt defeated then and gloomy...

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Tommy explains his sister

A couple of months ago a new children’s book crossed my desk. It's called Melanie & Tommy have two pet rats and one syndrome. The book is narrated by Tommy (above right) and follows his adventures with sister Melanie (left) as they push their pedal car around their Ontario farm and rely on two pet rats to get them out of trouble. Tommy came up with the book idea when friends made fun of Melanie, who has a rare genetic condition....

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