Tips Parenting

By Megan JonesIn the summer of 2013, Mindy Scheier was faced with a problem. Her son Oliver, then nine, wanted to wear jeans to school.Oliver, who has a rare form of muscular dystrophy, has trouble using buttons and zippers. He also wears leg braces, which don’t fit easily under restrictive fabrics like denim. Mindy, who lives in Livingston, N.J., had a choice: she either had to tell her son he couldn’t wear the clothing he wanted, or send him to school without leg braces and risk that he might...

By Louise Kinross Look at this illustration of an elephant. I couldn't stop. I kept seeing in the detail things that I hadn't initially seen.This is one of my favourite sketches by Hanzhen Yap, a 16-year-old from Johor Bahru in Malaysia. Hanzhen's intricate drawings of animals, historical buildings and everyday objects like kettles have been shown in 27 art exhibitions. Hanzhen has autism, and his parents taught him to speak and read by pairing words with thumbnail sketches that they...

By Louise KinrossBecky Quinlan (top right) can’t say enough about the benefits of Connect2care—a new secure portal that gives parents and kids access to their health records at Holland Bloorview.“My son Jack is pretty complex and seen in seven different departments,” Becky explains. “Now I can go online to see a list of all of his appointments and what’s pending, and it keeps me more organized.”She also loves having Jack’s clinical reports at her fingertips. “Before I’d take a ton of notes at every...

By Louise KinrossIn 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). The NHS trust that ran the unit initially attributed his death to natural causes—but his parents called for an independent investigation that found his death preventable. Twenty months later, Connor’s mother Sara...

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."BLOOM: What does your experience as a parent of a child with disability add to your role here? Julia Hanigsberg: I think it gives me a perspective on the...

By Louise Kinross ‘Our Curse’ tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without the support of a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, is nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times.Leo’s syndrome is known as Ondine’s Curse—or Congenital Central Hypoventilation Syndrome (CCHS). Leo’s dad writes that “He evolved from...

By Louise KinrossThis is Katie Hebert with her doll with a stomach feeding tube and brother Nathan. "We heated up a skewer and used it to melt a hole in the doll's stomach and then just placed the tube as usual," says mom Kyla. "The kids thought the 'operation' was so cool."Katie has suspected mitochondrial disease and her family in Texas has adapted her dolls to be like her. I received Katie's photos, and many from other families, after our story about Melissa Shang and her petition to have American...

 By Louise KinrossCheck out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or...

By Louise KinrossIn January I wrote about Melissa Shang, a girl who at age 10 got 150,000 people to sign a petition asking American Girl to release a doll with a disability. Melissa has a form of muscular dystrophy. The company hasn't.Then I heard from the Pots family in St. Catharines, outside Toronto. Pictured above are Emily, Sophia, Rachel and Janneke. Rachel and Janneke both use wheelchairs now and have global developmental delay with no diagnosis.Their mom Sara sent...

Looking for an interesting read? Check out the disability and parenting stories we've collected recently. But first, I'd like to introduce you to Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with Jillian Peters). You can get a unique window into Julia's first few weeks at the hospital on her blog or follow her on Twitter @Hanigsberg. Julia comes to us from Ryerson University, where she was vice-president of administration and finance. She's the...