Refugee claimant hits roadblocks getting disabled child's care

By Louise Kinross

I'm delighted to introduce the latest in our A Family Like Mine video series.

Meet Ola Atanda and her three kids: Bolu, 15, Abby, 7, and Rahmat Beverly, 19 months, who has cerebral palsy. The family, originally from Nigeria, has been living in a Toronto shelter for almost two years as Ola seeks refugee status. Ola is attending high school with hopes of going on to university to become a social worker.

Ola says her greatest challenge is getting Rahmat’s health needs met. “I’m having great issues with my Ontario Works case worker,” she says. “She never wants to approve any of her medical needs.” For example, she wouldn’t approve Rahmat’s feeding machine. “She’s a sick baby, a disabled child diagnosed with about six things…what do you want to see that could make her…eligible?”

Ola says her two boys get good medical care with their interim health card, which covers refugees without status. “I think the reason why I’m having this problem is because she’s a child with special needs.”

Check out all of our A Family Like Mine videos.

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Quick Flix: A dad and son drop the language of 'can't'

In the first of our Quick Flix video series, Gerardo Cappelli talks about how parents of kids with disabilities often get stuck on what their child can't do. They may view adapted ways of skiing or doing other things as less valuable than conventional ways. Gerardo and his teenage son Julian talk about how they adapt activities so everyone gets in on the fun.

Quick Flix is a BLOOM series of short clips about parenting, disability and health. Get ready to hear from parents, people with disabilities, clinicians, researchers, authors and other experts to help you on your parenting journey.

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'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 to do very well in school, and so challenging them back… I’m a mama bear and I thought differently.” 

See how Roma did it and hear Joshua’s advice for other kids with disabilities. 

*This video is captioned. Click on the CC at the bottom right on Youtube.

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Bulletproof 'is an experiment in extreme diversity'

In the opening of the trailer for Becoming Bulletproof, one of the actors says: “You never really see anybody with a disability on TV.”

Becoming Bulletproof documents the remaking of a 1920 Western film called Bulletproof, with a twist: its actors include people with Down syndrome and cerebral palsy as well as those without disabilities. One of the filmmakers describes it as “an experiment in extreme diversity.”

The actors meet every year at Zeno Mountain Farm in Vermont to write, produce and star in short films. The farm was founded by two brothers and their wives with the goal of building friendships through projects in film, art, theatre, sports and music. No one is paid to work with the group and no one pays to come and participate. The group is funded by donations and all proceeds from Becoming Bulletproof go to Zeno Mountain Farm.

The film, which has won a number of awards at festivals, had a screening Monday at the Brooklyn Center for Independence of the Disabled.

I hope to learn more about how and why Zeno Mountain Farm was created and perhaps interview one of the filmmakers. Stay tuned! Louise

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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 doing well at school after receiving behavioural intervention (IBI) therapy.

Rob and Dave wondered whether having gay dads would be challenging for a kid who already had autism, but he’s thrived.

You may remember this BLOOM post Rob wrote about their adoption. This video will be captioned this week. Hope you enjoy!

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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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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. Enjoy!

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A reading from author Julie Keon

Here's author Julie Keon reading from her new book What I Would Tell You: One Mother's Adventure with Medical Fragility about raising her daughter Meredith, who was born with severe brain injury. The book, targeted to parents and professionals, can be purchased on Julie's website.

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Want to know how dads feel? Watch this film

By Louise Kinross

It's not often you hear fathers of children with disabilities talk candidly about their child's diagnosis and how they reacted emotionally to it. But in Do It Differently, Scott Phillips sought out four dads with kids with autism and created an environment, maybe because it was dad-to-dad (Scott also has a child with autism), where they felt comfortable. The result is an exquisite, hour-long documentary where dads bare their souls. "We said 'why us,' as well as 'what did we do?'" recounts one of them. This is a must-see for every dad, and for every mom who felt their partner didn't 'get it' the way she did. You can watch it for free on YouTube or buy a DVD at Fan Blade Films. "For all fathers who feel lost, scared, and helpless I hope the film...inspires you to want to do more for your child who is different than you expected," says director Scott Phillips. "You are not alone."

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Four dads on raising kids with autism

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Get your kid active at Variety Village

By Louise Kinross

Check 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 a subsidized annual membership to families of children with disabilities.

E-mail Lindsay Mulock at lmulock@varietyvillage.on.ca to learn more. The offer ends Feb. 28!

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This looks mesmerizing

Trailer for Stand Clear of the Closing Doors.

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Brother with disability dies from hospital neglect

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Can't wait for this one

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My autism and me

ICYMI. Lovely video by a 13-year-old who explains her autism, then interviews other children about how autism affects them, including her brother.

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Filmmaker Kelly O'Brien on grief, siblings and honesty

A recent BLOOM night focused on filmmaker Kelly O'Brien and a screening of Softening, her film about raising her son Teddy, who was born with brain damage and a grim prognosis. 

Softening is a candid story about a mother's love and pain, a sister's magical bond, a father's joy and devotion and a little boy's experience of the world. This Youtube clip is a portion of an interview we did with Kelly following the film. 

A condensed version of Softening that focuses on Teddy and his sister Emma was posted on The New York Times. Thank you Kelly!

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A children's rehab doc says goodbye at age 18

In children's rehab, unlike in acute-care, kids and families develop long-term relationships with clinicians. Dr. Golda Milo-Manson, a developmental pediatrician at Holland Bloorview, talks about what it's like to work with a child from the toddler years through age 18, and the emotions she experiences when she has to say goodbye. Thanks Golda!



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Return on disability

This story on CBC's The National last night looks at the economic benefits of hiring people with disabilities. It includes an interview with Rich Donovan, CEO of Fifth Quadrant Analytics in New York City, a company that helps businesses assess how well they’re engaging people with disabilities as employees and customers. We interviewed Rich here last year. Check out how companies like Walgreen's are making money by innovating in ways that accommodate employees with disabilities.

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Immigrant moms hit a service wall

York University researchers Nazilla Khanlou and Mahdieh Dastjerdi (above) share the findings of their study on the experiences of 30 immigrant moms in the Greater Toronto Area and their service providers. Rich findings about the barriers faced and how we can better support immigrant families were offered at this BLOOM speaker night.

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I loved it

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