Missed milestones

By Katharine Harrison When my son Max was a baby and a toddler I cringed and flinched and recoiled when the topic of milestones came up. Milestones like crawling, walking, jumping, running, drawing, printing. You get the picture. Contortionist I was—my heart and mind got sore. What did I do? How did I cope? Well I confess that I wept alone (my childhood taught me not to cry out loud). I also did not talk to friends about it as their kids...

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Mom knits 'special needs' story into art

By Louise Kinross Kathryn Ruppert-Dazai (above) is a Toronto textile artist who plans to create an art series called A Failure to Thrive. These large-scale works will reflect her experience parenting a child with special needs.BLOOM: Can you tell us a bit about your son and how he's affected by his disability?Kathryn Ruppert-Dazai: Well, our son was our second child, so straight away I knew something was wrong. He was born with very noisy...

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'P-what?' A dad teaches doctors about child's rare condition

By Louise KinrossYesterday a dad came to visit me.His name is Syed Haider and his daughter Zahra, 5, has pantothenate kinase-associated neurodegeneration (PKAN)—a progressive genetic disease caused by mutations in the pank2 gene. A missing enzyme damages nerve cells and causes iron to accumulate in the brain. Syed’s story of having a child with a rare disorder reminded me of another dad, Matt Might, I had read about in this New Yorker piece....

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There isn't a detour around grief

By Louise Kinross A very wise person—Julie Keon, who wrote What I would Tell You: One Mother's Adventure with Medical Fragility—told me that you can’t grieve something you haven’t lost. So, you can’t choose to preemptively grieve an event, so that you can avoid mourning the loss when it actually happens. It seems like a very human thing to do—to imagine that there’s something we can do to avoid pain. But it’s not possible. This may explain...

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Why is beauty essential for disabled children, but not adults?

By Louise Kinross In 2006, Holland Bloorview broke the institutional mould when it opened the doors of an extraordinary building that would operate as a children’s hospital, but not look or feel like one. Banks of windows and terraces flooded the building with natural light and connected kids with the surrounding ravine and neighbourhood, while the interior was designed with quality, home-like materials such as wood, glass, ceramic tile and limestone....

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When a clown is the best medicine

By Louise Kinross Lorrine Peruzzo anticipated the daily unpacking and packing of special dressings in her daughter Katie’s pressure sores with dread.Katie, 12, who was at Holland Bloorview following a hip replacement, “had to be restrained and she screamed the entire time and had a complete meltdown,” Lorrine remembers. “We couldn’t keep doing that.”Enter Holland Bloorview’s therapeutic clowns, trained professionals who engage children with...

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My girl Nydia swims butterfly with one arm

By Louise Kinross This morning I saw Nydia Langill swim in the Parapan Am Games. This is a photo of Nydia (in black swimsuit closest to front) from an earlier event. I met Nydia when she was two at Holland Bloorview's Play and Learn nursery school. Her mom Claudia and I would take our kids and go for coffee after the sessions. Then we realized we lived in the same neighbourhood and could walk, with kids in wagons, to each other's houses. I...

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A helping hand? It depends on your kid's perspective

A recent piece in Business Insider features this photo of a girl born without a hand who gets a new pink bionic one thanks to 3D printing. The hand was made through e-NABLE, a Google-funded nonprofit group of volunteers all over the world, including school children. In the Business Insider piece, e-NABLE's founder Jon Schull says: "The hands can have a magical ability to make a kid feel good about his or her special hand or arm,...

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Are you a special-needs parent? Dream, fail, do it again!

By Louise Kinross When my son was about two-and-a-half, I called a family support line at Holland Bloorview and the kind voice at the end of the line was June Chiu. I was having trouble finding speech therapy for my son, and June listened, and called me back with some contacts to pursue. June is an icon at Holland Bloorview. She has worked here for almost 22 years. Before that, June says she “lived” here as her daughter Nadine—aka Dee (above)—received...

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Are we really from a different planet?

Editor's note: No, this piece is not related to my Facebook post about my "bad day" today. It happened a few days ago. But I couldn't get it out of my mind. And I thought you might find it interesting. Louise I bought an instrument for my son a couple of years ago but had trouble finding a teacher and it remained largely in the box. My son took it out the other day for a little jam session and I thought I'd look again for an instructor. I got...

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Focused on access: Photographer launches new app

By Louise KinrossMaayan Ziv found her life passion by accident. After landing in New York on a high school trip, her power wheelchair broke down.She couldn’t keep up with the jam-packed sightseeing itinerary of her peers, so she borrowed an old wheelchair to explore the area around her hotel. Armed with a tourist camera “I started taking pictures of people and what I was seeing and I got so excited about documenting what I was looking at through...

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Our very own Nydia Langill lights Parapan Am torch

Long-time Holland Bloorview client and elite swimmer Nydia Langill lit the Parapan Am Games torch last night in Mississauga. I met Nydia and her mom Claudia (right, with blue cap) at Holland Bloorview's Play and Learn nursery school about 19 years ago. I can't wait to see Nydia's event on August 13. Go Nydia Go! ...

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The Hungarian mom who started the play revolution

This is the Hungarian mom who was frustrated because her child with disability couldn't play with his siblings and peers at the playground. So, with friends and family, she designed equipment to accommodate everyone, including children with severe disabilities lying dow...

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Hungarian seesaw fits kids of all abilities

By Louise Kinross Earlier this year I received a message from a parent in Hungary: “We are a group of parents from Hungary who raise special-needs children and who believe we’ve invented something extraordinary for them. In our MagikMe project we create playground equipment that disabled and non-disabled children can use together.”Six parents co-founded the company MagikMe and I interviewed director Krisztina Emrich to learn more.BLOOM: Can you...

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At this camp 'disability didn't matter'

By Jessica Geboers “Ooh / There is a camp I know/ and it lies on the Rideau / and they call it Merrywood / and you know, they really should.” These are the opening lines to the Merrywood Song, the anthem of my favourite place on earth­­: Merrywood Easter Seals Camp in Perth, Ontario, for children and youth with disabilities. However, Merrywood was always much more than just a summer camp to me. From the first five days I spend there in the summer...

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