A practical guide for parents of disabled children and their doctors

By Louise KinrossMany of you followed Julie Keon on her blog. Julie just released a revised edition, with new content, of her book What I Would Tell You: One Mother's Adventure with Medical Fragility. The book covers all Julie has learned since her daughter Meredith was born with a severe brain injury 14 years ago. One of the best parts of the book, for me, was the chapter about befriending grief. Julie asked me to write a review, so...

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Amy Wright, founder of Bitty and Beau's, is CNN's hero of 2017

Two of Amy Wright's children have Down syndrome— Beau, 12, and Bitty, 7. In 2016, Amy opened Bitty and Beau's Coffee Shop in Wilmington, North Carolina. Knowing that most adults with intellectual disabilities don't have jobs, she wanted to show what people with the same disabilities as her kids could contribute. The shop now employs 40 staff with disabilities like Down syndrome, autism and cerebral palsy (watch Matt's story in the video above)....

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Talking to kids about weight: What works and what doesn't?

By Louise KinrossLast month the American Academy of Pediatrics released a policy statement on how children with obesity are stigmatized, and how health professionals can help reduce that stigma when talking about weight.This month, Holland Bloorview launched an interactive casebook on how to have positive conversations about weight and health with children, including those with disabilities. The book focuses on healthy lifestyles...

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A letter to myself

We just finished our first six-week narrative medicine group for parents. The group brought together nine parents for 90 minutes each week to work with BLOOM editor Louise Kinross and Shelley Wall, a biomedical illustrator and assistant professor at the University of Toronto. Each session we addressed a theme related to the emotions of raising a child with disabilities. Participants would read excerpts from a graphic novel, memoir, poem or interview,...

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A mask doesn't belong in a film about courage to be who you are

By Louise Kinross I read R. J. Palacio’s book Wonder—about a boy called Auggie with a craniofacial condition that elicits stares and fear—back in 2012.In an e-mail to the author on June 29 that year, I wrote: “I loved the book. In particular, I felt the recognition by Via (Auggie’s sister) of the two ways of seeing Auggie—the one of wholeness and beauty she saw in her mind’s eye vs. the picture of horrifying defects others saw, which...

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Accepting emotions reduces depression, stress in parents

By Louise KinrossMothers of children with autism reported significant drops in depression and stress and improvements in physical health after participating in acceptance and commitment therapy (ACT), according to a study published in the journal Mindfulness today.Twenty-nine Toronto mothers filled out questionnaires before and after the workshops where they learned to accept—rather than avoid—difficult parenting emotions, think more flexibly...

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Reporting on Illinois group home abuse wins award

Barbara Chyette holds a photo of her brother Lauren Braun, who choked to death on a hamburger on a supervised group home outing in 2014. He had no teeth and was unable to eat regular food unless it was cut into tiny pieces. Photo by John J. Kim/Chicago TribuneBy Louise Kinross 'Suffering in Secret,' a Chicago Tribune investigation into the abuse and neglect of disabled adults in 3,000 state-licensed group homes in Illinois, won first prize in...

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I feel joy

The following is a found poem created this week in the narrative medicine group for parents at Holland Bloorview. A found poem is like a collage, but in this case brings together a line of writing each parent wrote in response to the prompt: "I feel joy when my child ..." In the six-week narrative group, parents write and draw about their emotional reactions to parenting children with disabilities as a way to build self-empathy, resilience and...

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