Discharge day

Here's Ben and I waiting for his last physio session as an inpatient. Instead of complaining through every exercise, he laughed hysterically, giddy at the thought he was going home. I'm taking a much-needed break for the next two weeks, but our amazing BLOOM designer Sara will be here to moderate your comments. In September I'm speaking on a panel about how social media can be used to see through the eyes of the patient/family. Today I...

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'Rare' is the loneliest number

I'm honoured to share this post from Catherine Calhoun of Saint Francisville, Louisiana. Catherine volunteer manages the RARE blog for the Children's Rare Disease Network. Thank you for sharing Catherine and welcome! 'Rare' is the loneliest number By Catherine Calhoun The three taboos related to my son’s rare syndrome (McCune-Albright syndrome/fibrous dysplasia) are pain in kids, deformity (especially facial deformity), and early death....

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A recipe for success

I'm posting this story from the June print issue of BLOOM in honour of Empowering People with Disabilities, an event July 24 on BloggersUnite. Check out the other blog posts that have been written for the event. Please let me know of other innovative businesses run by people with disabilities! A recipe for success Lemon & Allspice Cookery is a Toronto catering business operated by a partnership of 15 people with intellectual...

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This and that

This is a grainy pic because Ben is a speed demon on his rehab bike and doesn't slow down -- even for photographers. I was contacted by Catherine Calhoun who volunteer manages the RARE blog for the Children's Rare Disease Network. This is a fabulous resource with lots of firsthand stories from parents. Parents helping kids and kids helping parents, a meet in the middle was an interesting post about how we can lose sight of what's most important...

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Just what the doctor ordered!

His dream arrived in that box to the right, which was much bigger than it looks. It was packed with eight exquisitely-wrapped gift bags -- one for every member of our family and two for the workers who will go to overnight camp with Ben in August. Ben got a frog stuffie to take to camp, the Sunshine Foundation t-shirt he's holding up and the cap he's wearing. And in a large envelope was his dream: two full weeks of Camp Kennebec, the money...

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Potty training: It's not a race

Amy Julia Becker, mom to William (left) and Penny (right) is a writer and recent graduate of Princeton Theological Seminary in New Jersey. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope." Here she writes about a developmental stage that stresses many parents, but which can be especially sensitive for parents of children with disabilities: potty training. Thanks for...

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Eric sees the beauty of technology

Eric Wan (above right) has lived a life few can imagine. At 18 he was a healthy high-school student who excelled at computers and violin. Three days after a routine measles vaccination he was rushed to hospital unable to move and struggling to breathe. For four months he laid in intensive care, where he was diagnosed with transverse myelitis, an inflammation of the spinal cord. He was paralyzed from the shoulders down and needed a ventilator to...

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Small world!

Over the last month we've had visitors from 606 cities in 57 countries. We'd love to know more about parenting or working with children with disabilities in your neck of the woods. Please hit comments, then post a comment to tell us where you're from! (e.g., I'm Louise and I live in Toronto, Canada.) Thanks...

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Of course I want another 'like him'

Today we have a guest blog from Brittany Ross of Winnipeg, Manitoba. She writes about her life with her adorable son Skyler (above) at Taking it Day by Day. Thank you Brittany!Of course I want another 'like him'By Brittany RossWhen I was younger I used to dream of having the perfect family. There would be me, a loving husband, and a bunch of rugrats to chase after. My dreams started to come true in my early 20s, when my loving husband and I got pregnant....

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Custody or services?

Stacey Berton of Kitchener, Ont. is a single parent raising Wesley, 9 (above), who has autism and symptoms of bipolar disorder. This past spring, Wesley's aggression increased to the point that he was hurting himself and others. "The school couldn't manage it and I was covered in bruises and there was no help," Stacey says. Twice in June, Wesley was hospitalized in the child psychiatric ward at Grand River Hospital. Stacey looked for a specialized...

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Is big better?

The other day Ben pointed at me and signed: "When did you grow up?" "A long time ago," I said. He asked D'Arcy the same thing. Then he gestured to himself to ask: "When will I grow up?" "You are growing up, right now!" I said. Later I thought about one of the signs he used and realized that it was "tall" – bent hand rising up into the air – not "grow" – one hand pushes up through the other, as a flower shooting up through soil....

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Enter filmpossible!

Ever wish the world could see your child through your eyes? Here’s a challenge for our Canadian readers – and their kids. Enter filmpossible – Holland Bloorview’s online video contest. Create a video under two minutes that brings visibility to disability. Tell a story. Dispel myths. Celebrate what our kids bring to our lives. Winners will be determined by a panel of celebrity judges and online public voting. First prize is $5,000. I can’t...

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