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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This parent's essay didn't sit right with me

Photo by Elinor Carucci in The CutBy Louise KinrossOn Sunday, I clicked on this piece in New York Magazine: Every Parent Wants to Protect Their Child. I Never Got the Chance.There’s this adorable image of a toddler who appears healthy, but who, we learn, has cystic fibrosis (CF). CF is a progressive genetic disease that causes damage to the lungs and digestive system. It shortens life, although some people with the condition are living...

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Young carers and other pieces of disability news

Photo by CBC NewsBy Louise KinrossYouth who help care for a disabled or ill brother or sister were in the spotlight this week at the Young Carers Forum in Toronto, organized by The Change Foundation, an Ontario health think tank.Alyssa Van Wynen, 21, centre above, spoke to CBC about her experience supporting her older sister Tiffany, left, who suffered a traumatic brain injury in a car accident. “With my sister, she lost out on a lot of stuff,...

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'We're the custom tailor for people who use wheelchairs'

Koolway co-founders Jennifer Gallienne and John Cook with head cutter, sewer and pattern designer Vienna Liu.By Louise Kinross Jennifer Gallienne is co-founder of Koolway Sports, a premium Canadian line of coats, capes, boots and mitts designed for children and adults who use wheelchairs.“Our outerwear is for people in wheelchairs who want to go out and enjoy life and be warm, comfortable and dry,” Jennifer says. “The reason people come...

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Self-compassion may fuel parent resiliency

By Louise KinrossGreater self-compassion was related to less stress and depression in parents of adults with developmental disabilities, according to a study in the Journal of Applied Research in Intellectual Disabilities.The findings are based on self-report measures of 56 Toronto parents who attended one of two six-week groups as their children waited for services after leaving high school. One was a mindfulness group where they were...

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'We just fell in love with her at first sight'

Catherine and Trish Emmons and daughter Priscilla, 3, are the focus of our new A Family Like Mine video. Priscilla, known as Cilla, was born dependent on drugs to a mother who couldn't care for her. She spent her first month in the neonatal intensive care unit in pain, on morphine, inconsolable. At nine months, Trish and Catherine adopted her. "When we first brought her home, we noticed that she would have huge temper tantrums when we would leave her," Catherine recalls. "And I don't mean by leaving the house. I mean she would be in the living...

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Stares at the mall

Many of you know Sue Robins as the author behind The invisible mom, one of our most read posts about social isolation among families of children with disabilities. Sue recently took a poetry class and wrote this piece, which she says is fiction, based on her experiences raising her son with Down syndrome, and stories other families like hers have shared with her. Louise Stares at the mall By Sue Robins Always the caboose He’s minding...

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Finding the music in everyone

By Louise Kinross The other day I posted a call for story ideas on the BLOOM Facebook page. Karen Bojti wrote: “Another ‘out of the box’ person I have discovered is Laura Nadine. You can Google her. She’s a professional violinist, a wandering minstrel and music teacher. She is also a woman on the autism spectrum. She is teaching Charlie to play the violin.”I hopped over to Enlightened Audio, which is Laura’s website, and this sentence jumped...

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'Trust your instincts. That's what I tell parents'

By Louise Kinross Fahima Afroze is a biomedical engineer with three daughters. Myreen, 11, has autism and Zafreen, 8, has cerebral palsy.When Farzeen, now 4, was hospitalized at six months old, Fahima knew her way around the health system.“They thought Farzeen had a bone infection, but she kept getting other infections,” Fahima recalls. “She caught hand, foot and mouth disease, and had yeast infections in her tongue. They brushed it off and...

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