I am Nat's ghostwriter

This piece by Susan Senator (centre), author of Making Peace With Autism and the Autism Mom's Survival Guide (for Dad's too!) touched me. Susan always writes with great honesty and insight about raising her son Nat (left). Here she writes about her role in speaking for Nat, who has autism and limited speech. The truth of this line hit me: “I notice how the norm for most people in our family is to ignore Nat.” Susan describes how a child's inability...

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This looks mesmerizing

Trailer for Stand Clear of the Closing Door...

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Happy holidays!

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Wanted: friends

By Nathalie Wendling I think having friends is the most important thing in life. No matter how bad my day is going, having a friend around seems to make it better. Finding friends for my 14-year-old daughter Melanie (above right), who has Cornelia de Lange syndrome, has been an endless, exhausting and sometimes devastating, struggle. In nursery school, the whole class was invited to a birthday party—except Melanie! In Grade 2,...

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For some parents, the 'empty nest' is a fiction

By Ijeoma Ross Unexpectedly we have found ourselves in the midst of a transformation. It’s not our transformation, but one that is taking place around us.Many parents we know are undergoing a major transition within their families. It seems that suddenly their children are old enough to leave alone for brief outings or older siblings can be pressed into 'babysitting service' for a spontaneous night out. The hassle of finding constant care for...

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Former client helps youth gain independence

By Louise Kinross Gabriella Carafa is a social worker in our LIFEspan program with a long history at Holland Bloorview. Since she was a preschooler she's been a client in our neuromuscular clinic. As a teen she volunteered on our youth advisory and as a mentor and more recently she worked at our university-based Independence Program as a youth facilitator, mentor and social worker. BLOOM talked to Gabriella about how she got interested in working...

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BLOOM media roundup

Happy Monday! Looking for a read that will make you think? Check out the disability and parenting stories we've collected recently. Let us know if we missed a good one! Louise Forget what you know about disability Channel 4 video Singer Viktoria Modesta is part of British Channel 4's Born Risky campaign, aimed at challenging viewer stereotypes. She wears 'artistic' prosthetic limbs made at The Alternative Limb Project. This...

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'You get the one you're supposed to'

By Kari Wagner-Peck When my husband Ward and I started dating I was 42 years old and he was 29. Yeah, I have a trophy husband. We eventually wanted a child. We briefly explored fertility counselling, but after I cancelled our introductory appointment with the clinic—twice—I had to explain to Ward that I didn’t want to be pregnant. A biological child wasn’t important to me. Understandably, it took a while for my husband to come to terms with the...

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Is newborn euthanasia an answer to parent pain?

By Louise KinrossI was surprised to see this headline on a CBC The Current story yesterday: Newborns should have the right to die, ethicist says. Can newborns assert their rights?The piece is framed as a discussion about euthanasia for newborns with severe, terminal illnesses.One of the guests is Udo Schulklenk, a professor of philosophy and the Ontario Research Chair in Bioethics at Queen’s University.He wrote a paper defending euthanasia of...

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'You go to places you never thought you could'

By Louise Kinross Life with children with disabilities and chronic health problems is complicated. It can be traumatic and a source of heartache.But it can also be life-changing in a positive way, says Laura Kerr Meffen, mom to Emily, 16, who has a rare metabolic disorder and multiple disabilities.“With Emily it was kind of a tragedy and a grief, but I’ve had so many positives with having her in my life,” Laura says. “Sometimes you feel...

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Finding your voice

Anna Rendell presented a workshop called Me to We on the power of parents finding their voice on social media at the Ontario Association of Children’s Rehabilitative Services conference last month. She presented with parents Anchel Krishna and Darren Connolly. Below she shares how she benefited from using social media when her twins Drew and Dean, 6, were diagnosed with cerebral palsy. Anna and family are pictured above at Great Wolf Lodge.By...

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A mother's dream for inclusive, arts-based housing takes shape

By Louise KinrossA community garden and farmer’s market, arts programs, yoga and a café are part of a Toronto housing community Skye Gross (above left) envisions will bring adults with disabilities and artists together to live and work. “This is a radical departure from anything we’ve seen before,” says Skye, whose daughter Rachael, 18, has complex medical and developmental needs. “The current housing, recreation and job opportunities for people...

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After the fall

By Louise Kinross Today is International Day of Persons with Disabilities. We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics. Then a crash head-first into ice almost killed him. The Crash Reel is a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization for a life-changing...

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Coming up: Interview with Pia Pearce

Next Wednesday is International Day of Persons with Disabilities. We're marking the occasion with an interview with Pia Pearce, mom to Kevin Pearce (above), an American snowboarder who was expected to win gold at the 2010 Vancouver Olympics. Then a crash head-first into ice almost killed him. Some of you may have seen The Crash Reel, a raw, exuberant film that follows Kevin's wild success, devastating accident, and hospitalization...

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