Friday, May 19, 2017

For this scientist, a healthy weight isn't a number

By Louise Kinross

Amy McPherson is a scientist at Holland Bloorview who is co-lead of our Centre for Leadership in Participation and Inclusion. Amy’s research looks at health promotion and obesity in children with disabilities. Eight years ago she packed up her life in Britain and moved to Toronto to become a scientist in our Bloorview Research Institute. “I’d been teaching psychology and sociology to medical and nursing students, and I wanted a new adventure that would focus on my research,” she says.

BLOOM: What led you into the field of children’s rehab?


Amy McPherson:
In the U.K. I did my PhD in self-management in childhood asthma. My research has always looked at empowering kids to look after their health by giving them the knowledge and skills—but also the feeling of control over their health—so that they can manage a chronic condition.

When I saw a job opportunity in Participation and Inclusion here it encapsulated my philosophy of working with children with long-term conditions to help them participate and be as active as they want and can be. I did an interview on Skype and I came here for a meet-and-greet. Then I moved 3,000 miles.

BLOOM: Was that a hard decision?

Amy McPherson:
It was a no-brainer. I was really drawn to the fact that no one here talked in terms of deficits in kids with disabilities. I met people who were committed to giving kids with disabilities a future that was as meaningful as any other kid’s future.

BLOOM: Can you describe your research?

Amy McPherson: When I first came I was interested in our Busy Bodies program, which promoted healthy eating, physical activity and feeling good. My office was embedded with clinicians in Therapeutic Recreation and Life Skills. That was a phenomenal opportunity to understand what went on in the hospital from a clinical perspective. I worked with therapeutic recreation specialists to understand what the kids in the program thought about health: ‘So you have a disability, what does that make health look like to you?’

It was a great introduction to rethinking my notions of what had been quite a medical approach to self-management, and looking at why participation matters. That was a springboard into looking at different aspects of health, wellness and happiness and working with kids with an existing condition to see what they want their health to look like.

BLOOM: Where does weight fit into that?


Amy McPherson: There’s a two to three times higher prevalence of obesity in kids with disabilities. That puts them at risk of the same secondary conditions that any child with obesity faces. But in addition, it can be harder for a child with a disability who is heavier to move around, do self-care and be independent. Different diagnoses also come with specific challenges that make it hard to manage weight.

BLOOM: How can we help clinicians and families address weight issues?

Amy McPherson: I’m very interested in how we talk about weight and weight management. Often kids get weighed and measured when they come in for regular checkups, yet we hear from clinicians that they have concerns about talking about the topic. This is true with kids in general and their families, as well as kids with disabilities. Doctors don’t feel confident and are worried they’ll ruin a relationship. It’s a hugely stigmatized issue and by doctors saying ‘I don’t want to offend anyone,’ they’re acknowledging the implicit stigma in society that higher weights are bad. We want to find ways to address weight and wellness that are not stigmatizing and judgmental, but supportive and positive.

BLOOM: How do you do that?

Amy McPherson: We’re doing something super cool. Working with Christine Provvidenza, we got Centre for Leadership funding to develop a knowledge translation casebook that is a practical handbook for health professionals about how you talk about weight. It will have things like sentence starters and scripts and simulations of positive and less-positive experiences. It will also have case studies and learning guides and will talk about what the evidence says.

One of the fun parts is that we’re working with families, youth, clinicians, researchers and students to co-develop the content for this handbook. It will be online and interactive. It’s for all children and parents, but will also have chapters addressing common challenges related to different disabilities.

BLOOM: What’s an example of neutral language?

Amy McPherson: The doctor could say: ‘Would it be okay if we talked about how you can feel healthy and energized?’ Or ‘Would you be interested in knowing more ways to stay healthy? How can I help?’

We want to encourage clinicians to have a conversation about wellness that suits the child. You may live in larger body, it doesn’t bother you and you have no medical complications. So we talk about what makes you feel well. Or, you might have a higher weight and a lot of medical complications and are distressed about it. So it may be appropriate to focus more on the weight and work together to reduce those health risks. But we need to always address it in a positive way. There isn’t a one-size-fits-all, and not everyone who weights over ‘x’ has to be subjected to a medical intervention. It’s not realistic and the evidence doesn’t support that.

Research shows that the vast majority of people who lose weight regain it. Physiologically our bodies will always try to put that weight back on, and it’s got nothing to do with will power. So what is sustainable for this person, and what does health and wellness mean to them? That’s hard for people to get their minds around, because we’re so used to saying ‘let’s fix this, let’s get the number down.’ But we’re setting up people to fail when we do that. There are physical ramifications to putting on and losing weight and it can also be incredibly damaging psychologically.

BLOOM: I’m assuming that one of the reasons doctors don’t like to talk about weight with children is that no one really knows what to recommend?

Amy McPherson: There’s very little evidence about how talking about the topic in different ways affects outcomes. In the future, we’d like to evaluate our knowledge translation casebook in different health settings to start to understand this area more.

BLOOM: What do you love about your work?

Amy McPherson:
I love designing ways to figure out what’s really important to individuals and how we can support that person to work towards that. I’m a huge fan of strengths-based approaches. What are you really good at? What are your resources and strengths? How can we support you to thrive, whatever that means to you? I’ve worked on topics like incontinence, sexuality, weight management and wellness. We just received CIHR funding for a study on solution-focused coaching for kids on health promotion goals that they set for themselves. That’s for kids with spina bifida and cerebral palsy.

BLOOM: What’s the greatest challenge of your work?


Amy McPherson: The hardest thing is to break away from the idea that health is a number and it’s just a case of eating less and moving more.

BLOOM: What emotions come with this work?

Amy McPherson: A whole mix of emotions. It’s exciting to be part of a movement that’s enhancing the field. I’m very comfortable with an approach on wellness that is individualized and means something different to each person. It compliments with my own personal philosophy that rather than ‘How can we get you to live in a smaller body?’ the question should be ‘What do you find motivating?’ A person’s best weight has been described as whatever weight a person achieves while living the healthiest lifestyle they enjoy, which I think is a lot more feasible and positive for most people.

The work is also inherently frustrating because it’s complex, and you’re trying to figure out the best way to move forward without doing damage to anybody.

The stigma around kids with disabilities and people who live in bigger bodies makes me feel very sad. And when you have the two together, it’s an intersection of multiple stigma.

BLOOM: I would like us to do more research looking at how we can help children feel comfortable in their own skin. I’ve heard of kids with amputations who wore hot, heavy prostheses for years, even though they didn’t help functionally. And then when they feel more comfortable with their bodies, they abandon them. One woman with no arms in a BBC interview described it as being her ‘independence day.’

Amy McPherson: There are huge parallels between the stigma associated with size, and the stigma associated with other body differences. Difference is not emphasized enough. For example, very often the health benefits of things like being active and eating well are overshadowed by weight loss and unrealistic body ideals. Traditionally in rehabilitation, we haven’t been so good at looking at the big stuff that matters to youth with disabilities—beyond the physical, the function, the fix. We hear that our kids in school often don’t get health and sexuality education. I’ve heard of students with disabilities being told to leave the classroom during those sessions because they don’t need it. We can do so much better.

BLOOM: If you could go back and give yourself advice when you were just starting out in this work, what would it be?


Any McPherson: You’ve got to be really tenacious. It’s a bit of a roller coaster, but you need to stick with it and stick with high standards at all times. And collaborate. That’s where the fun is—in working with other scientists, clinicians and families to come up with, if not solutions, then approaches to the things that are really important to children and families.

Monday, May 15, 2017

Kudos to Johnson's Baby for its new ad

By Louise Kinross

Johnson's Baby released a new ad that features a child with Down syndrome for Mother's Day. 

It begins with a close-up of a baby's beautiful blue eye, with the line: JOHNSON'S BABY CELEBRATE LOVE AND DIVERSITY.

Then it moves to other baby parts, the toes, chubby fingers stroke a leg, then touch the tummy, hands clasp, and we see the soft skin of the baby's back. Finally, the child's face is revealed, and he smiles. He's a baby with Down syndrome.

WITH A BABY WITH DOWN SYNDROME flashes on the screen. 

According to the Buzzfeed piece linked to above, Johnson's Baby posted the clip on Facebook with this message: "For us and for all mothers, all babies are Johnson's babies."

I love this ad. I love that it conveys the value of every child. I love that Johnson's is including babies that have been marginalized. This is a BIG deal.

I just wish they didn't have to include the child's diagnosis: WITH A BABY WITH DOWN SYNDROME.

The ad speaks for itself. The baby conveys the message of diversity. 

Would a similar ad with an African American baby say: WITH A BABY WITH BROWN SKIN?

Of course not. 

I can't wait to see what kinds of diversity Johnson's Baby brings us next. I hope this is an ongoing series designed to show us the beauty of all children.

The ad was created by Brazilian ad agency DM9.

Friday, May 12, 2017

Students run concussion rehab program for youth

By Louise Kinross

There’s little science to show how to best help youth with concussions who continue to be bothered by headaches, fatigue and dizziness.

A new research study at Holland Bloorview is testing the impact of a six-week program of education, low-intensity exercise and relaxation on 200 youth aged 10 to 18 who have concussions, most of them sport-related.

“We want to know if this active rehab approach works for kids with concussions, and, if it does, at what time points after the injury,” says co-investigator Anne Hunt.

The study design is innovative because it’s carried out by students who are clinicians in training. This includes students in their final year of occupational and physical therapy and kinesiology.

The youth with concussions first come in for a series of brain and body fitness tests. “Based on this, we prescribe an individual exercise program that has an aerobic component, like walking or riding a stationary bike, as well as up to 10 minutes of sports-specific coordination drills, and five minutes of relaxation through deep breathing or visualization,” Anne says. “We go through our Concussion and You handbook, which covers things like how to conserve energy, good sleep hygiene and tips for returning to school.”

Over the next six weeks, the youth carry out the exercise program at home and call or visit the students running the program for support. At three and six weeks they come in to have their fitness levels and health reassessed.

“Families tell us that health providers or coaches encourage the kids to push through their symptoms, or to work at a higher intensity than we do,” Anne says. “This can make their symptoms worse or slow their recovery. We teach them what it means to work at a low to moderate intensity. Ours is a very careful, methodical program. Some kids may only be able to start at two minutes of aerobics when they first come in.”

Having students run the program has many benefits. “We tell the clients participating that they’re not just helping us learn about concussion, that they’re training these students,” Anne says. “The kids tell us they love working with the students, who are younger, whereas I’m sort of more of a mother figure. All of the students come in with a wealth of experience. For one client they may need to develop sport coordination drills for volleyball, whereas another client needs dance or lacrosse drills. The students work together, given their different professional roles, to divvy up the assessments and scope of practice.”

Andi McHugh, a physiotherapy placement student, says she’s gained confidence “because we’ve been given a lot of autonomy. In other placements, you’re working more closely with your supervisor. Here, it’s more self-directed learning but with peers you can bounce ideas off.”

Tesca Andrew-Wasylik, who just finished a five-week placement in the concussion program, agrees. “Being part of a student-run clinic is such a unique experience. 
I've enjoyed the challenge of being presented with a problem and finding a way to solve it independently, while still knowing I’m being supported by my supervisors. I think it’s very successful in preparing students for the real world and reinforcing autonomous learning. I’ve learned so much about collaborative practice and family-centred care, as well as learning from the families and kids that I worked with.”

Tesca graduates this year as a physiotherapist. She's shown working with Emma, 10, in the photo above.

The research is funded by Scotiabank, and is cost-efficient because it’s implemented by students rather than staff.

Study results are expected in two years and the researchers hope they will inform best-practice guidelines on rehab for youth with concussion.

Thursday, May 11, 2017

What I consider when writing about my son

By Kari Wagner-Peck

My book Not Always Happy: An Unusual Parenting Journey comes out on May 16. Yes—I’m one of those people who finds their life experience so interesting I wrote a book about it. But first I wrote for several years on my blog about my husband, about me and mostly about our son Thorin who lives with Down syndrome.

I started the blog because I didn’t relate to much of what I was reading about Down syndrome. I didn’t fit the typical profile myself. I was 49 years old when I became a first-time mother, married to a man 14 years my junior. We adopted a boy with Down syndrome who was in foster care. I quickly realized if I wanted to read about someone like me, I would have to write it. I knew it would be funny, angry and not about how I felt about Down syndrome, but how Thorin felt about everything. About 60 per cent of the time I don’t actually write about Down syndrome. I write about us and have found that even with our quirks we are not that different than any family.

My most consistent dilemma is—is it really okay to write about Thorin? You can Google Thorin and find countless links to on-line content including photos. That thought fills me with concern and sometimes outright fear. So what over-rode my concerns to write about my son? And what restrictions do I impose? I have some thoughts.

Social justice narratives and social commentary are important

Social justice narratives and social commentary sounds stuffy, not fun and lecturing. Two things happened that made me not see them that way. When I was 12 years old two books showed up in my family’s bathroom: The Grass Is Always Greener by the Septic Tank by Erma Bombeck and Dick Gregory’s *igger. I read both within days of each other. I learned from Gregory that civil rights stories could be told in a personal, funny and sharp tone. From Bombeck I learned that the isolation of parenting in the status-conscious suburbs could be viewed in a good humored way—in spite of the fact that I was 12 and raised in a working class family.

At the beginning of this journey I justified my decision to write about Thorin because my narrative challenged existing perspectives about raising a child with a disability. I couldn’t relate to the idea of grieving a Thorin without Down syndrome. I objected to the notion that Thorin is an angel from heaven. I had no time for a laundry list of things Thorin will never do. This quote has been on my blog since day one: “I exist as I am, that is enough” from Walt Whitman’s Song of Myself. That was the premise. I told myself that by writing about Thorin I was helping to change the narrow view ascribed to all people with Down syndrome. I stick by that and I hope it is true.

Thorin is not emblematic of Down syndrome


I’m writing about Thorin to try to change a bigger world view about people with Down syndrome, but he is not a symbolic character. This one is trickier and thornier. I wrote about telling Thorin he had Down syndrome by explaining to him that he had a super power called Down syndrome and one of his powers was farting. I wanted him to know he was like everyone else.

Just days before our talk, Thorin, then 6, wore his Thor costume to the screening of the film Thor. If he loved My Pretty Pony as much as The Avengers I would have said he had a magic power and that’s likely how a Brony is created. Some mothers were reasonably upset because they assumed I was suggesting all people with Down syndrome have super powers. Some were also upset that I said farting was a super power. I should add that my husband thinks farting is a super power. Soon after I gave Thorin the genetic description of Down syndrome. He grew bored and utilized another super power by telling me to stop talking. Our original conversation would play out for years to come and in fact is the book’s epiphany.

The stories I choose to tell aren’t about Thorin’s Down syndrome but instead about who he is as an individual—his love of taking photographs, his obsession with The Avengers, his struggles with communication, his anger with being treated like a baby, his kleptomania and his storytelling abilities—take for example I Love You Eyeball Cheeseburger.

Thorin’s past is off limits

Thorin was placed in protective custody. That’s the most people know. One can assume that sort of thing doesn’t happen if a family has had a bad day, but when something harder and more tragic transpired. That information is at Thorin’s disposal when he is an adult. It isn’t for public consumption. Related to that is the fact that I want to be as respectful as possible of his biological family for Thorin’s sake. Thorin has made, for now, an evolved peace with his past that I cannot fathom, and with his “ex-mother,” as he refers to her. What I do share is the Byzantine process of state adoptions because it isn’t the typical story of family-making or even adoption. If you want a great story on how Dunkin Donuts Munchkins got us our adoption worker, you’ll have to read the book.

I do not write about my parenting frustration or wine consumption

I chose to be a parent at what is considered to be an advanced age. I didn’t expect it to be a picnic all the time or a shit show. I was grateful I had a chance to do what I had wanted for decades. My frustrations are mine. Same with all my relationships. My point of difference is not what an asshole my son is or how disappointed I am in my husband. Instead I write about my own perceptions and mistakes. I don’t find writing about parents who drink funny in general. That’s right I’m judgey. In fact I’m imperfect. I exist as I am. That’s enough.

Thorin has say in what I write about


In the early years of the blog I made those decisions for myself. Now I ask Thorin what I can write about. Consequently, I don’t write as much as I did. Lesson learned. He is a burgeoning tween—with feelings, experiences and ideas about what he does not want others to know. That’s his right and I respect it. He has crushes, but I’m not allowed to talk about on whom. He feels strongly, but I can’t always say about what. He has some ideas that are private. I’m doing a reading at a book launch party next week at a local bookstore. At first Thorin had said he wouldn’t go. When his best friend, Ella, said she wanted to attend, he said he would go but would leave while I read about him. Tonight leaving theatre class I asked, “Would you help me pick out what I read? Can I suggest stories and you decide?”

“Yes.”

“Do you think you will go outside with Daddy?”

“I do.”


Kari Wagner-Peck is a social worker and writer who homeschools her son Thorin in Portland, Maine. You can follow her at A Typical Son.



Wednesday, May 10, 2017

Immerse yourself in disability art

The ReelAbilities Film Festival is holding its free Family Film and Art Day at Holland Bloorview on Saturday May 13 from 10 a.m. to 4 p.m.

Five films are being screened as part of ReelAbilities, which is presented by the Miles Nadal JCC. This is a great opportunity to see films about the lives, stories and art of people with disabilities and Deaf people.

There are also inclusive art activities for the whole family at Holland Bloorview and a lunch-time youth panel on arts and accessibility.

Reserve your free tickets at toronto.reelabilities.org.

Monday, May 8, 2017

Tales of kindness and contempt

By Louise Kinross

How do you think you’d be treated if you were out and about in the city and blind?

Recently I read media stories about two blind men and their commutes by subway and train in major cities.

And they couldn't be more different.

Amit Patel (photo below), a former doctor who lives in London, describes travelers who hit his guide dog Kika with umbrellas or bags, barge into Amit and complain that the pair is holding them up. He says station employees ignore him when he needs help. His dog Kika now wears a Go-Pro camera to track the public’s reactions. “Losing my sight is very lonely,” he says in this Daily Mail piece. “If I’m traveling by public transport I’m sometimes like a scared little boy sat in the corner.”

Blair Wong (photo above) is an optician who travels into Boston each day with his white cane. “I bring out the best in Bostonians,” he says in this Kind World story
I have met so many different people simply because I have a cane. It’s probably hundreds, but to me it feels like thousands.”

The story includes photos of some of 
regulars who walk with Blair or sit with him to chat on the train. A few have even become good friends.

I wondered why people would have such different reactions to a disability. We know people make snap judgments about others that are often based on false information. How might people's assumptions be different when they see Amit as opposed to Blair?

The only thing I could come up with is that carrying a cane conveys a clear message that someone is blind. Perhaps people who see Amit don’t immediately understand that his service dog acts as his eyes. Maybe he doesn’t appear 
blind”  to them.

Or perhaps, when they see a service dog, they imagine that the owner doesn’t want an offer of help? There are a number of disabled advocates on social media who write about how it annoys them when people constantly offer help.

This doesn't, of course, explain the rude comments and “tutting” Amit hears around him, or the people who hit his dog with bags and umbrellas when she’s doing her job sitting beside him on the escalator. Kika has even been kicked.

Is it possible that Boston is a more humane place than London? What do our readers think?


The top photo of Blair Wong is reprinted from Kind World. The bottom photo of Amit Patel is reprinted from the Daily Mail. Amit's wife Seema posts Go-Pro video of her husband's adventures on Twitter @Kika_GuideDog.



Friday, May 5, 2017

Tim Rose and Magnet make the job search easier

By Louise Kinross

Holland Bloorview has partnered with Magnet, an online employment platform, to bring together job-seekers with disabilities and employers.

“Job seekers register and employers build a profile and post a job, and the system uses advanced matching technology to match that job to candidates based on experience, education and qualifications,” says Tim Rose, diversity project lead at Magnet. “If LinkedIn and match.com had a baby, it would be Magnet.” The system was developed at Ryerson University.

Today Tim met with about 15 youth with disabilities at Holland Bloorview to help them build their Magnet profiles.

“When an employer first sees a profile, they don’t see any demographic information,” Tim says. “It’s anonymized to eliminate a lot of early-stage hiring bias.”

Tim says that high school students with disabilities don’t have the same opportunities as peers to do part-time work. “Most of the jobs in that age bracket are very physical jobs,” says Tim, who has cerebral palsy. “This is what I faced. I can’t work at Starbucks or McDonald’s, so I had to look very hard to find a student job I could do physically.” Today, the rise of social media is opening up communications jobs that may be perfect for young adults who are savvy with Facebook and Twitter.

But it’s still a tough slog for young people with disabilities, he says.

“There’s a huge amount of stigma around disability and people still assume in 2017 that disability means employees who have to take more sick days and have more challenges. A lot of employers are reluctant, particularly when it comes to taking on youth who are unproven.”

Employers who do want to hire people with disabilities may not know where to find them, Tim says. “We want to change that by providing employers with a pool of highly qualified talent.”

Tim has personal experience with how challenging the job search is when disability is part of the picture. “I graduated from university with a master’s degree in human rights law,” he explains. “I was personable, outgoing and I had a whole resume of volunteer experiences. I’d started a charity right out of university and even with all of that, and with my ability to articulate well, it took me over four years to land a full-time career job.”

Tim said it was the hardest time of his life. “When you apply to something in the range of 90 to 100 jobs and you get 90 to 100 ‘no thank yous,’ it’s hard to take. I started to question what my value was as a person with a disability and I questioned whether I would ever find something.”

During this time Tim did part-time work as a research assistant and started a business called Disability Positive Consulting. “I wanted to demonstrate the asset of disability,” he says. “I firmly believe that my disability has made me a better person. It’s made me a better communicator, more adaptable, more creative. I built a business around that idea and did a lot of speaking gigs to organizations and government about this perspective. “

It was through consulting work with Ryerson that Tim learned about Magnet and landed his current position.

He has lots of advice for other young people with disabilities.

“Number one is don’t give up,” he says. “If I hadn’t had an incredibly supportive family who kept telling me not to give up, I would have, and I wouldn’t have made it. The other thing I firmly believe is that disability is an asset and you need to figure out what you’re good at and passionate about and go out there and network to connect to the types of jobs you want to be in eventually. Also, it’s okay to be frustrated. It’s okay to get annoyed at the employment situation. You shouldn’t be expected to plaster a smile on your face 24/7 when things aren’t going well.”

Teens aged 16 and up can visit Magnet (hollandbloorview.magnet.today) to start their work profiles. The system is free for job-seekers and employers.