A trip to Disney without parents spurs independence

Today's Parent Magazine produced a beautiful video about two children who were part of a group of over 30 kids from Holland Bloorview who went to the Walt Disney Resort in Orlando for a day with volunteers. The event in April was supported by the Sunshine Foundation of Canada. For some kids it was their first time away from parents and first trip on a plane.

Tomas Tobon (above left) with volunteer Daniel Scott and his twin brother Martin are interviewed about this magical day where they got to make all the choices. 

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QuickFlix: Can support workers be friends, too?

Holland Bloorview family leader Donna Cappelli discusses whether paid support workers can be considered friends of her son Julian, 15, who has high needs that make friendships with peers challenging.

QuickFlix is a series of short BLOOM clips about parenting, disability and health. Don't forget to check out our A Family Like Mine videos.

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'I'm making a play about normality'

"My name is Jacob," begins the film Natural Disorder, which played last month at the Hot Docs international film festival in Toronto. "The first time people meet me they get an instinctive impulse to either run away from me...or to kill me."

Jacob Nossell is a Danish stand-up comedian with cerebral palsy. "He could have been 'deselected' by scientists and his parents before he even was born," reads a press description of the documentary. "And realistically, he is now a burden on society..." 

In Natural Disorder, Jacob mounts an interactive play for the Royal Danish Theatre. Act 1 is called "Do I have the right to live?" He recounts the story of his adoption as an infant and how, a few months later, the adoption agency offered to "exchange" him when it was determined he had a disability.

One of our clinicians recommends this documentary highly. Click on Natural Disorder to read more and view the trailer. Let us know if you've seen it and what you think.

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Why do rehab clinicians need training in 'hope?'

By Louise Kinross

A fascinating document on the role of hope in children's rehab caught my attention.

“Offer hope training to clinicians” is one of three recommendations by the Parenting Matters research team at the Centre for Research on Children and Families at McGill University in Montreal.

Parenting Matters, funded by the Canadian Institutes of Health Research, is studying what it means to parent a child with a disability like autism, Down syndrome or cerebral palsy.

The recommendations for bringing hope into care are based on feedback from 87 parents, clinicians, managers, researchers and policy-makers at a 2014 symposium for the Canadian Network of Children and Youth Rehabilitation and the Canadian Family Advisory Network.

They include:

-Create opportunities for discussion about parent and child hopes where families feel listened to, respected, and supported

-Offer hope training to clinicians

-Align service provision with family goals, needs and hopes

Before drafting the strategies, participants heard about findings from a doctoral study on parent hope by researcher and social worker Sacha Bailey.

Sacha suggested that the idea that "parents who are hopeful are in denial" was a myth. "I showed that parents are quite grounded in the realm of what is possible with their hopes,” Sacha says. "Every family is unique. To assume that what one family hopes for is what all families hope for is not helpful. Hopes shift over time and are often about establishing a new normal."

Participants then broke into small groups where they developed ideas on how to integrate hope into their work.

BLOOM: Why is hope important in understanding parents raising kids with disabilities?

Sacha Bailey: My interest comes from my clinical experiences. Initially I worked with adults with intellectual and developmental disabilities in a community setting. Then when I went back to study to be a social worker, as a student I had lots of experience working with families of younger children with neuro-disabilities and I started to notice that despite their kids' challenges, these families displayed a lot of resilience.

BLOOM: As a parent, I know hope is an awkward topic that can cause tension between parents and clinicians. On the one hand, I've always said that if parents didn't have some hope, they couldn't carry out the gruelling therapy expected of them. On the other hand, as a parent who got stuck on hope for years and years and years, for something that wasn't in the cards for my son, I can only imagine how frustrating it might be for a clinician. I've often thought about what someone could have said to me so that I might have gone up the learning curve faster with my son, so that we weren't spending an inordinate amount of time focused on something he couldn't do.

Sacha Bailey: It is an awkward topic. One reason I chose to do my doctoral study was to understand from the perspective of parents what did it mean when a parent said 'I want more hope' or 'I'm looking for hope' or 'That doctor gave me hope.' Since presenting my findings to working groups, I've been given a lot of good feedback that helped me recognize the tensions around how clinicians understand hope and how families do. Clinicians often bring up the idea of not wanting to give false hope and being a little tentative about giving or encouraging hope.

BLOOM: What are the main ideas about how clinicians can make their practice more hopeful?

Sacha Bailey: To me, the biggest finding from this activity was creating opportunities for conversations about parent hopes. It's as simple as asking parents 'What do you hope for the future for your family and your child?' And also asking the child. It gets back to family-centred care. It's easy to get away from that when each professional has a different focus. We want them to think bigger picture.

BLOOM: So do you mean maybe ask a question about 'what kind of life would you like your child to lead?' as opposed to 'how many steps can he take?'

Sacha Bailey: Even if the parent says 'I hope my child will walk' and in the clinician's mind it's not a realistic goal, that opens up a conversation: 'this is your hope, this is my perspective.' Parents tell me that having the conversation is more important than whether the goal is obtainable.

BLOOM: As a parent I sometimes cut clinicians out who told me something wasn't possible for my son.

Sacha Bailey: For the parent who wants their child to walk, for example, and won't take no for an answer, I think the answer is to continue the conversation. 'What else do you hope for? If your child doesn't walk, how does that change your hope for the future? Are there other ways he can participate that don't involve walking but would still make the future bright?' Instead of getting stuck in the goals of a particular discipline, this opens up the conversation to think a little bit more broadly. Instead of pushing for a specific function, it's about how can the child participate in life activities.

BLOOM: I know some parents say that their child's rehab goals don't necessarily translate into something that improves their daily life.

Sacha Bailey: It's a quality of life issue. Sometimes we come up with these goals without asking the child or the parent. Ultimately, is this going to help you? Is this going to increase your quality of life? Hope is a part of life. Does this child have hope for the future?

BLOOM: We know that parents of kids with disabilities are at greater risk of experiencing mental and physical health problems. Is it possible that hope mediates these problems?

Sacha Bailey: Parents of kids with disabilities have higher levels of stress, depression, anxiety and health problems compared to other parents. When you look at the literature on hope, where they measure hope, it certainly does act as a resilience factor and seems to mitigate negative outcomes. Parents who report more hope also report less depression, anxiety, stress and better coping than those who report having less hope.

BLOOM: How would 'hope training' be offered to professionals?

Sacha Bailey: The idea first came up when people talked about integrating it into curriculum of any program that has clinicians who will work in pediatric rehab. But it also has to be part of continuing education. As a clinician working within difficult systems, it can be frustrating and you can get discouraged, and clinicians need hope sometimes. Continuing education could be an interdisciplinary workshop or grand rounds. These are opportunities to bring clinicians together to talk about how we can help our families be more hopeful in our practice.

Sacha Bailey is research coordinator at the Centre for Research on Children and Families at McGill University in Montreal. She is also a doctoral student in the School of Social Work at McGill.

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Why I love being an online college student

By Chantelle Fogarty-Griswold

I’m 26 years old and I have severe spastic cerebral palsy. From as far back as I can remember I loved school and I loved to learn. I hated PA Days, weekends, holidays and summer vacations. If I had it my way, school would be 24 hours a day, seven days a week.

From a young age I dreamed of becoming a teacher. From Grades 1 to 12 I had an educational assistant who helped with my physical needs, such as taking notes for me and helping me go to the washroom. Going to school was my life: several EAs and teachers told me I was the only student they knew who loved the first day of school each September!

I was an A student in elementary and secondary school. My biggest goal was to go to college or university.

When I started high school, the resource teacher wanted to put me in applied level courses, thinking that academic courses would be too overwhelming for me.

After speaking to me and listening to my elementary school teachers and support staff, she reluctantly gave me an academic course-load and watched me soar!

I thought my life was going up hill. I was making friends, studying to make good grades, dreaming and looking forward to going on to post-secondary school. On May 11, 2004 my life changed dramatically.

What my family and I thought were seizures turned out to be a rare movement disorder called dystonia, with full-bodied spasms causing chronic pain and fatigue.

Dystonia is a rare, and in my case late-onset, disorder in which my muscles contract involuntarily, causing repetitive or twisting movements in my body. I have full body spasms constantly throughout the day and night, causing severe pain and fatigue.

In order to learn how to deal with my pain, I was an inpatient for six weeks at Holland Bloorview. After that, I went back to Grade 10 for half days, but I wasn’t treated well.

My mum went in and showed them what to do when I have a spasm: to just hold my hands in an arm-wrestling position so that neither the EAs or I would get hurt. This made me feel safe and comfortable, but the school said it was liable and they couldn't do that.

The program support teacher told my EAs not to help me in a spasm. So I went through the discomfort of the spasm, and the discomfort of being alone and scared. The program support teacher also made me face a wall when doing my work.

Worst of all, she backed me into a corner one day and told me I was disgusting when I drink because I drink through a straw and make noises caused by my cerebral palsy. When she was called out on this comment, she denied saying it. To this day, I am self-conscious about the way I drink, even though I know I can't help it. 

They also kept me belted into my wheelchair all day, even though I was able to transfer myself and have a walker. Basically, I was a liability to them.

Later, the school brought brought in an occupational therapist to teach the EAs how to better deal with my spasms. Unfortunately, this was a nightmare.

The OT told the EAs to try to stretch my arms and hands out and apply pressure, but I often got hurt in the process. My neurologist sent a note letting them know I could easily snap a tendon, but they ignored it.

At one point I considered going to Durham College to take the academic upgrade course to earn my Grade 12 diploma there. I set up an appointment and my mother and I went in and spoke with an accessibility coach. As soon as we talked about my complex case and what accommodations I’d need, she told us that I was not a ‘fit’ for them. 

If I wanted to go there, she said, I’d have to hire and pay for a personal support worker to come and attend classes with me. With a one-income family, that was way too expensive.

While I was still at high school, my principal suggested I finish my Grade 12 online through the Independent Learning Centre. I didn’t follow through at the time, but after I graduated from high school I took one of these online courses.

It was challenging because it wasn’t equipped to meet my needs. For example, I didn’t have a scanner, so I couldn’t scan my work into my computer and use my Kurzweil program to read the work to me. I need Kurzweil because I have trouble comprehending what I read. At the time, one of my EAs from high school helped me by scanning my books at my old high school, but it was hard.

In the summer of 2015, something made my parents and I talk about online post-secondary school—also referred to as ‘distance learning.‘ I looked into distance courses at Centennial College and found my dream course: Professional Writing. 

I booked a meeting with a learning strategist at Centennial’s Centre for Students with Disabilities. My learning strategist set me up with an Individual Student Profile, which is a document listing the accommodations I require.

Last year, on Tuesday September 8, I started my first day of college as an online student.

My course work is electronic and Centennial gave me a reading program called Read and Write. This reads my lectures and webpages. I also have an assistive technologist at Centennial that I can e-mail or call for support.

I am now near the end of my second semester of Professional Writing. I’ve always wanted to be a writer and this was the perfect program for me to pursue. I didn’t know much about long-distance education before I began, especially for students with special needs, but I’ve learned a lot since.

For me, the main benefit of being an online student is: I pick when I study. If I’m having a bad day, I don’t have to worry about missing class.

I like the fact that I’m in a virtual classroom where I can interact with other students in my program. We're encouraged to comment on each others’ answers and are marked for participation.

Another benefit of distance learning is that I can deal with my health issues in the comfort of my home.

The challenging part of online learning is that if I need extra time to complete my course or an answer from my professor, I may have to wait 48 hours to hear back. That can sometimes slow me down when completing homework or assignments.

I asked Reed Hilton-Eddy, a learning strategist at the Centre for Students with Disabilities at Centennial College, who else might benefit from this kind of learning.

She recommends online education to students who have mobility issues, students who have chronic illnesses that may flare up at any time, and those who find being in public or large crowds stressful.

When I asked Reed if her office helps students transition from high school to college, she explained that they run a one-day workshop each year called PREP Smart. It explains the transition process and services offered to incoming students. They also provide a conference in the summer called SMART.

I am so glad that I finally found distance education. My hope and dream going forward is to write a book about my life with cerebral palsy. I want to be a voice for children and adults with special needs. We often talk about what people with disabilities can’t do. I want people to know what they can do.

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A prosthesis, and a work of art

By Megan Jones

In 2013, McCauley Wanner and Ryan Palibroda did what stereotypically passionate artists are wont to do: they quit their jobs, sold their cars, and moved across the country to pursue a dream. But their story wasn’t a cliché. McCauley and Ryan were working on an unconventional art project—a series of bright, fashionable covers for prosthetic legs.

The undertaking had begun in 2010 as a university project. At the time, McCauley was completing her masters in industrial design at the University of Calgary. While she’d decided to turn her attention to medical design, she was determined to incorporate her long-held interest in fashion into her work.

A friend introduced her to John-Paul Austring, a fellow U of C student who had lost his leg to cancer at the age of 16. The two began talking about prosthetics, and the aesthetic options available to those who wore them. During her conversations with John-Paul and other amputees, McCauley quickly realized there weren’t many choices. “The more people I talked to the more I realized there was nothing,” she says. “It was shocking.”

She decided to take matters into her own hands, and dedicated her thesis to imagining what fashionable prosthetic covers might look like. After she finished school she joined with Ryan, who’d recently completed his masters of architecture. He worked on the practical, physical designs. Combining their skills, the pair soon began developing their own real-life models.

Today, the project has grown into Alleles, a Victoria, B.C.-based company that produces the bold prosthetic covers long envisioned by McCauley, now 30, and Ryan, 35. “An Allele is a biology term meaning a mutation of a gene responsible for causing variation like hair colour, eye colour, or smooth as opposed to wrinkly,” McCauley says. “Our company is all about providing variety to showcase variety.”

Their devices, which are made from plastic, attach to prostheses using a strapping mechanism. Since launching in October 2013, Alleles has produced around 1,000 of them.

Ready-to-wear covers are generally priced between $325 and $500 (custom models cost more—for example, some buyers have requested designs that feature tattoos they’ve lost along with their limbs). From the beginning, affordability was a key concern for McCauley and Ryan. They’d seen very few fashionable prosthetics online, and those that existed were typically elaborate art projects that cost thousands of dollars.

“We designed it be a retail product,” Ryan says. “We wanted people to actually be able to buy them.”

While the pair currently dedicates nearly 12 hours a day to working with and for amputees, prior to starting the project, McCauley and Ryan had very little experience with disability. In a way, this was an asset, they say. Being outside the industry meant they didn’t have preconceived notions about how prosthetics should be made, which allowed them to take more risks.

“It often seems like in medical design, people are concerned with getting their clients to function again in the setting of a hospital or clinic,” McCauley says. “But they don’t really think about that person living their life in the real world on a daily basis.”

“As outsiders we got to ask ourselves, ‘Why doesn’t this have any soul in it, why doesn’t this have any heart?’”

In order to make up for their lack of prior knowledge, the Alleles team made sure to consult closely with amputees, who talked about what they wanted and needed from their prosthetics.

One of those people was John-Paul. Since meeting McCauley during their university days, the now-29-year-old has stayed connected to the project and regularly gives feedback on their products. He has five covers of his own, and wears his current favourite 24/7, only removing it when it needs to be washed.

When he first lost his leg, John-Paul was given a bulky plastic cover, which created strange, unnatural-looking contours under long pants. He was embarrassed about how he looked, but felt hesitant to speak with his prosthetist, fearing he’d be seen as frivolous.

By contrast, he says, the Alleles covers feel like an empowering form of personal expression. “A prosthetic is a medical, utilitarian device,” he says. “It’s something that’s done to you. With these covers though, you’re turning the tables.”

John-Paul feels a sense of pride when he wears his covers, and a willingness to embrace his disability. “People don’t choose to lose limbs or get prosthetics,” he says. “But now you can choose to put something artful and beautiful on it. That becomes part of the healing process.”

Best of all, he says, the intricate designs have changed the way strangers interact with him. In the past, he says, people would stare at his missing limb, or ask him prying, personal questions about what happened to his leg. He felt singled out, objectified. And most days, he had no desire to rehash the painful experience of having cancer with people he barely knew.

With the covers though, the conversation shifted. Suddenly, people were complimenting him on the exciting designs. He could talk about his style, rather than his prosthetic. It was a much better icebreaker.

“Some days, I still struggle with the idea that my disability is a sign of weakness to others,” he explains. “This cover helps me get away from that. It shows I’m owning my disability.”

***

There’s a reciprocity between the Alleles designers and their customers. Just as people like John-Paul are influenced by the covers, individuals who wear Alleles products inspire McCauley and Ryan, who often name their designs after significant people or events. John-Paul has inspired two titles, with one cover bearing his first name, and another, his middle name, Steen.

In the future, McCauley and Ryan hope to expand their collaboration beyond individual customers. They’re hoping to partner with larger companies to become more visible in the mainstream fashion world. A brick and mortar store is also in the works. The couple plans to open up a boutique where customers can come to browse and get fitted. Ultimately, they’d like to include a line of clothing that would complement their covers as well. To them, this blending of fashion and disability is crucial.

“What people don’t understand sometimes is that everyone—regardless of ability—cares about how they look,” Ryan says. “Everyone has a way they want the world to see them.”

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New book explores sibling emotions about disability

By Louise Kinross

Perfect is a new children's book about the birth of a baby with a disability, told from the perspective of her older brother. 

In a piece she wrote for The Scottish Book Trust, author Nicola Davies said she "wanted to write a story that gave a space for children's feelings, that allowed the 'unsayable' to be said." 

Nicola, whose mother is deaf, writes that one of our problems is our hesitation to talk about disability. 

"When a disabled child is born, there is a lot of fallout. Everybody has to adjust their expectations and there are, inevitably, powerful feelings involved: disappointment, grief, anger. All sorts of ugly things rear their heads. In time, as the new family member shows that they are a person, not a label, those negative feelings are erased and replaced by love. But pretending that the initial difficulties do not exist isn’t helpful, particularly for young children who may be confused by their own feelings."

The book, suggested for children aged five and up, will be released Nov. 1 by Graffeg Books.

"This is a story about disability and how we see it, but it's also about any sort of difference, and how we make space for diversity in our society," Nicola says.

Stunning illustrations are by Cathy Fisher.

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