BLOOM media roundup

If you haven't seen the first video in our A Family Like Mine series, covering diverse families raising kids with disabilities, check it out. Rob and Dave, above, are a married couple who adopted Owen, who has autism. They talk about their adoption journey and how Owen has settled into their family and thrived. And in other news: 'I didn't feel strong enough' The Telegraph Brilliant animated account of a dad whose...

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Last call for the BLOOM survey

Complete our BLOOM survey by June 30, and you'll be entered in a draw to win a framed Stephimal by autistic artist Steph Coveart (above). The joy that bounces from Steph's drawings of cats and dogs—each coloured in bright, bold markers, floating on white space and with quirky facial expressions—has attracted the attention of artists and animators. Thank you to everyone who's already taken five minutes to tell us what they like, and...

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Two dads adopt a son with autism

Here is the first video in A Family Like Mine, a new BLOOM series covering diverse families raising children with disabilities.  Meet Rob and Dave, two dads who adopted a son with autism.  “We have a nephew with special needs and we’ve seen what they’ve had to go through and fight for,” Dave says. “We thought it was the right thing to do.” Initially their son was fascinated with the movement of trains, doors, locks and washing machines, but as he’s grown comfortable with his new family, his ‘stimming’ behaviours have faded. He’s...

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Two moms, one ill baby, and the best care

My dear friend Janis Purdy is speaking today on a SickKids panel celebrating PRIDE week. Here she writes about parenting a child who was born with serious medical problems and the hospital care—often kind and empowering and sometimes challenging—she and her partner experienced as two gay moms. Thank you Janis! Louise By Janis Purdy I remember all the people and intensity in the room when Jonny was born. I remember him being whisked...

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Courage Project: Focusing on the positive

By Louise Kinross This is a picture my son took at Cherry Beach as we sat on a log. Dogs are drawn to him. Because he's so small, he's afraid they may jump on him and knock him down. In keeping with our series about courage, I was reminded of an interview I did with Dr. Jacob Towery, a psychiatrist at Stanford who's found cognitive, and other types of therapy, useful for parents of kids with complex disabilities. I just went back and read...

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The Courage Project

By Louise Kinross Sometimes I feel like I can't find the courage I need. Most recently it's happened when my son, who has severe disabilities, left the school system at age 21. At a time when most parenting 'gigs' are winding down, it feels like mine is ramping up, as I try to help him carve out a meaningful life. My son's disabilities, particularly his lack of speech and behaviour issues, make it hard for him to fit into a typical employment...

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5 things a doctor wishes parents knew about 'disabled' kids

5 things a doctor wishes parents knew about 'disabled' kidsBy Dr. Peter Rosenbaum1. The most important word and idea we can share with parents—from the beginning of their journey into “childhood disability”—is DEVELOPMENT. Children—including those with disabilities—change and develop; as parents we develop as our kids grow and change, and as a result we usually become more skilled as parents. Of course some children’s development will likely always...

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Does disability make us human? Or is it a threat?

By Louise Kinross  In the last couple of days three stories on social media jumped out because they portray such different, opposing, pictures of what disability means in our culture. Last night CTV reported that Swiss genetic lab Genoma used a family photo of a child with Down syndrome belonging to a Canadian family in a building-size banner to promote their prenatal test for diagnosing Down syndrome in a fetus. The...

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Parents of ventilated kids risk own health due to sleep loss

About half of the parents and professionals who've filled out our BLOOM survey so far have asked for more stories on families raising kids with high medical needs. Here is a start! By Louise Kinross As a nurse practitioner who’s supported hundreds of families bringing home a child who uses a ventilator, Krista Keilty knew these parents struggled to get a good night’s sleep.But no one had ever measured the difference in their sleep...

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The trouble with rehab 'miracles?' They ignore luck

BLOOM is always looking for parents and professionals to write for us or be interviewed. This piece by occupational therapist Veronika Lukacs came to us because Tom Nantais, a former Holland Bloorview researcher, told me she'd have great insights to share. Thanks Tom and Happy Birthday! Veronika (above) with Russell Winkelaar helped build 62 StopGap ramps to improve access to stores in London, Ont. this weekend. Woo hoo!...

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'What we saw was value'

"Incompatible with life? What we saw...was value, beauty, potential, our precious daughter." Listen to New Zealand photographer Rachel Callander talk about how her daughter Evie inspired her travels across the country to meet with families with children with chromosome differences. The result is a photographic art book called the Super Power Baby Project.  The real deficit, Rachel says, is not to be found in children with genetic conditions, but in a culture that fails to embrace their humanity. This woman rocks her talk. ...

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Share your thoughts on BLOOM

Help us BLOOM brighter by taking a few minutes to fill out this survey. Respond by June 30 and we'll enter you in a draw for a framed Stephimal by autistic artist Steph Coveart (above). You may remember this piece we did on Steph, who has a business selling her art. At BLOOM with Holland Bloorview, we're dedicated to bringing you the latest views and news on parenting children with disabilities and disability issues, culture and more. We appreciate...

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Why can't you just forget 'that thing?'

This is an excerpt from Lisa Bendall's latest book Magic Moments: Twelve Little Stories About Disability, Family and Fairly Normal Life. Lisa is a Toronto writer who lives with her husband Ian, who has quadriplegia, and their daughter Emily. Her blog www.50gooddeeds.com shares inspiring ways to make the planet a better place. Thanks Lisa! By Lisa Bendall “Do you have a driver’s licence for that thing?” If my husband and I had a dollar for...

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Disability doesn't just take, it gives

By Louise Kinross Might Have Been by Rob Rummel-Hudson is a post every parent of a child with a disability can identify with. You'll read it today on Support for Special Needs, and your heart will begin to ache. Because you'll hear Rob, who wrote Schuyler's Monster: A Father's Journey With His Wordless Daughter, describing you, and your thoughts about what might have been had things been different for your child. It's a place you...

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Adapting toys to help kids get around

Every day this week we'll release one in a new series of short Holland Bloorview videos that convey the work we do and the spirit we bring to it. Enjo...

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Can a robotic bear help kids in hospital feel better?

This video today on The New York Times looks at whether a teddy bear robot can help reduce anxiety, pain and loneliness in kids who are hospitalized. The prototype, called Huggable, is being developed by Boston Children's Hospital and M.I.T.'s Media Lab. The hospital is financing a 90-person study to see if the robot, currently controlled by a remote worker, can capture a child's emotions by tracking physiological changes in a bracelet the child...

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When humour, stories are the best medicine

By Louise Kinross When Emma Evans (right) couldn’t sleep in the middle of the night after a bone and muscle-lengthening surgery, the best medicine was a Holland Bloorview nurse who told her funny stories.“I had very bad heel pain,” Emma, 14, recalls. “I wasn’t sleeping great and I didn’t respond well to high-intensity meds. It was a tricky situation. My nurse Katie Hauer (left) was able to help me calm down and not focus too much on the pain...

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Seeing 'as if for the first time'

By Janice BenninkLately I started wondering how my parenting may have added to the challenges of my son’s anxiety disorder, which goes hand-in-hand with a primary diagnosis of Asperger’s syndrome. He is a 21-year-old adult, first diagnosed with autism at age seven. Back then, I spent my days consumed with learning about all things autistic—attending workshops and meetings, poring through books and staring at my computer for hours on end—seeking...

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'Making friends' an unexpected rehab gift, parents say

By Louise Kinross Jimena Ortiz and Ricardo Menendez say one of the greatest gifts of their son Sebastian's inpatient stay at Holland Bloorview was the friends he made. Because of life-threatening seizures, Sebastian, 16, wasn't able to go out with school friends in the past. "We didn't allow him to go anywhere alone so he missed trips with school," Jimena said on Friday as they were packing up to leave. "He felt like he was alone,...

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