BLOOM media round-up

By Louise Kinross Last week we posted Ho, ho, humbug about how toy shopping can be a difficult time for parents whose children have disabilities. Every year Ellen at Love That Max creates a list of regular toys that may work well with children with special needs, based on recommendations from therapists and parents. She just posted her 2015 list. We had a comment on our post about how expensive specialty toys can be, particularly...

Read More

Ho ho, humbug? Toy shopping is hard for special-needs parents

By Julie Brocklehurst There's a natural desire to pass family traditions down to the next generation, and I always thought I would… until my son, Brennen, came along, rocked my world, and changed how we do things, including the Christmas holidays, entirely. For the first couple of years of Brennen’s life, I would dread going to toy stores. Who am I kidding? I still do. I avoid them at all costs, knowing that there is very little available...

Read More

A letter to my Bubbie

Laura Rosen Cohen has a teenaged son with a rare genetic disorder. This is a letter she wrote to her late grandmother, who was and remains a formative and towering figure in her life and who sadly passed away too soon. By Laura Rosen Cohen Hi Bubbie, I started this letter to you a hundred times or more in my head, and each time, I started crying, so I had to stop, and try to focus on the positive until my breathing became more rhythmic,...

Read More

Why home nursing is not respite for one mom

By Marcy White It looks good on paper. After a year in hospital with machines helping him breathe and tubes sucking out mucous that clogs his airway, my 13-year-old son Jacob, who has a rare neurodegenerative disorder and is prone to respiratory infections, was discharged last summer with 24-hour nursing care in our Toronto home. But aside from the fact that nurses can cancel at a moment’s notice—leaving parents like me to pull all-nighters...

Read More

How does disability enter into care decisions about preemies?

By Louise Kinross Last week I read this post called One Size Does Not Fit All about “shared decision-making” between parents and medical staff in a neonatal intensive care unit. It’s written by a Winnipeg neonatologist. Kate Robson, who is the parent coordinator in the NICU at Sunnybrook, posted a link to the piece on Facebook. In looking at challenges to agreeing on whether intervention should be offered to a small preemie, the doctor...

Read More

I wish I'd seen the beauty of sign language years ago

By Louise Kinross Last night was fun. I got to tell a story in American Sign Language (ASL) about a funny incident that happened when I was a teen. I was doing a test for a sign language course and we had to to tell a story about growing up.  Mine involved my 16-year old self, my best friend, a bottle of rum that our old babysitter bought for us, and an encounter with the police late at night as we lay on the grass looking up at the stars. In...

Read More

What do disabled youth say about friendship?

By Louise Kinross Youth with disabilities tend to have fewer friends and smaller social networks than their peers. And studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability. Most of the research about friendship for people with intellectual disabilities is based on the perspectives of caregivers and support workers. That’s why a three-year University of Toronto...

Read More

Clinicians must better respect children's 'agency,' ethicist says

By Louise Kinross The other day my son had an interview to volunteer in a cat adoption centre in a PetSmart.He can’t speak and doesn’t have a robust form of alternative communication, but he can use some sign language.That night, when I asked him about it, he signed that there were two cats. They were black and white.(I’m now not sure if one was black and one was white, or if they were both a mix of the two colours, or if one was a solid colour...

Read More

'I was raising him on my own'

Here is the second video in A Family Like Mine, a new BLOOM series covering diverse families raising children with disabilities.  Meet Joshua Bennett, 17, who’s heading off to Georgian College to study automative business. Joshua has cerebral palsy and was raised by his mom Roma. “When you’re a single parent, you tend to have to do everything yourself,” Roma says. “So, it wasn't only going to appointments, medical appointments. It's going to school appointments and being challenged by the teachers who may think that Joshua's not going...

Read More

More than meets the eye

By Sue Robins There’s been a tropical storm on the Hawaiian island of Kaua’i and the one-lane bridge to the North Shore is washed out. We’re renting a cottage in Hanalei and decide to venture north to Ke’e Beach. Paradise in the rain is still paradise to me.When we get there my son Aaron, 10, refuses to go to the beach. It’s filled with debris from the storm, and the water is unsettled. I understand his thinking: what’s the point of a beach...

Read More

The story behind Robert Munsch's 'Love You Forever'

By Louise Kinross I made up my own melody. When my son was born with "unusual features" and a suspected genetic condition, Robert Munsch's Love You Forever popped into my mind. Singing the lines in the hopes my baby would "feel it" was a way to defy and deflect the doctor who treated him like a piece of broken machinery and trotted out a litany of things that were "wrong" with him at an hour...

Read More

Parent, advocate takes on role at London's Children's Hospital

By Louise Kinross “It’s a dream job,” Darren Connolly says, and it’s a world away from the bank call centre where he once worked. Darren is the new family advisor of the Pediatric Family Resource Centre at Children’s Hospital at the London Health Sciences Centre in London, Ont. His role is funded by the Children’s Health Foundation at the hospital. Darren says that parenting his son Tyler, 11, who has cerebral palsy and complex medical problems,...

Read More

Austerity cuts threaten to silence British writer

By Penny Pepper   From humble beginnings on a council estate, bereaved of my father aged seven, battling a personal fight with the pain of juvenile arthritis and the bigger war against a discriminating society—I now find myself at a threshold. My memoir First in the World Somewhere is launched on the crowd funding publisher Unbound and will later go into the shops via Penguin Random House. The memoir details my fight to break free from...

Read More