When parents leave the unit 'they're incredibly capable'

By Louise Kinross

Dr. Andrea Hoffman is a developmental pediatrician who works with children with complex medical problems on our inpatient units and in our feeding and neuromotor clinics. She was hired in 2013 after finishing her developmental fellowship here. She’s also a black belt in karate who first came to Holland Bloorview as a volunteer.

BLOOM: What led you into this field?

Andrea Hoffman: I started volunteering at Holland Bloorview when I was 15 at the old Hugh MacMillan centre. I lived close by and I started in Spiral Garden. During the school year I volunteered at Laura Hunter’s gym skills program, which evolved into a summer job at her bikes and balls camp.

The family of a child I supported there one-on-one invited me to their home to get to know them before camp started. It was one of those opportunities where I got to see the love and happiness and joy, but also the complexity and challenges that families face raising a child with special needs. When I left for university I knew I wanted to be in health care. Ultimately I decided to go into medicine. I came back here as a medical student on a general elective and as a resident in general development. I saw a number of different aspects of child development and decided this was a good fit.

BLOOM: Why was it a good fit?

Andrea Hoffman: I’m a detail-oriented person, which works well for complex care, and I like the idea in child development of looking more holistically at the child and family, instead of just at an individual bodily system. I like the time we can spend to get to know children and families—to follow them longitudinally to see how both change over time. The other piece I really like is supporting kids and families in trying to optimize quality of life and helping kids reach their full potential. 

BLOOM: What's a typical day here like?

Andrea Hoffman: I don’t think I have a typical day. Every day is different, which is why I love this work. I wear four clinical hats. I’m one of the doctors on the complex continuing care (CCC) unit and with inpatient respite care, and I’m the doctor on our multidisciplinary, outpatient feeding team. I also see children in a general development clinic. What ties those different areas together is that most of the children have some degree of medical complexity. On top of that, I’m involved in research and education and on various hospital committees.

BLOOM: What do you love about your job?

Andrea Hoffman: So much. Seeing how families celebrate their children and find creative ways to include them in family activities. One family spoke proudly about how they adapt water skiing at the cottage so the child can be a part of it.

It’s amazing to be part of a team that supports a child’s development. Many of the things that come easily to other children require so much effort for the children that we see. Things other people take for granted are celebrated accomplishments [here]. That changes your perspective on things.

One of the joys on the inpatient unit is seeing the change in children and parents over the course of their admission. Many come to us after a long hospitalization in an intensive care unit, where the medical team does most, or all, of the care. Here the focus changes. We look to parents to be hands-on—to provide the care and increase their confidence and capacity to manage their child’s medical, therapy and emotional needs. At the start, parents are often nervous and hesitant, but when they leave, they’re incredibly capable and the care just flows. That’s a really beautiful thing to see.

BLOOM: What’s the greatest challenge?

Andrea Hoffman: The larger system for children with medical complexity. We rely on the larger system for successful transition to the community and we spend a lot of time doing preparation and advocacy. There have been significant advances in community services. But even when a child gets everything they’re eligible for, it often isn’t enough to fully meet the many needs of families. For families with limited financial resources or social supports we know that the transition can be particularly challenging.

We encourage families, while they’re here, to bring in other family members or friends who may be able to provide regular support, so that we can train them on the child’s care as well. Making sure that parents get a break from their caregiving responsibilities is important. As part of our discharge planning, we like to arrange the child’s first respite stay here, so that families know they’re going to have an opportunity to recharge. We know that maintaining parent wellbeing is critical for the child’s wellbeing.

BLOOM: What kind of issues in the larger system do you see?

Andrea Hoffman: The system isn’t perfect, and the services families receive at home depend on where you live. Some families receive a lot more than others. We’d like the system to be more equitable, so that all families with medical complexity are adequately supported.

We talk to families after they’re discharged and we hear a lot about larger system issues. They’ve been at Holland Bloorview, in a place that celebrates their child and is completely accessible, and when they move home, they may find their child can’t use the playground or be part of other community programs. Some families are embraced by their community, and others aren’t. It can be hard to prepare a family for what to expect.

There’s definitely more work to be done. More resources are important but it would be great if there was also more flexibility for families to decide how they use funding. For example, if families don’t use all of their overnight nursing hours they can’t use those dollars for something else. For some families, more overnight nursing may be the answer, but for some, more support in other areas may improve the quality of life for the child and family.

BLOOM: What kind of emotions come with this job?

Andrea Hoffman: It’s the full gamut. One perfect example is a child we were transitioning home recently. I was at the bedside to give the discharge summary and say goodbye. There were lots of hugs and joy and celebration and happiness. Just as I was walking out of the room a team member walked in and said ‘We have a glitch.’ The emotion quickly switched to frustration when I learned that one of the community providers was unable to release the equipment the child needed. We almost had to delay the discharge. Instead, we spent the afternoon troubleshooting with equipment providers and the local hospital to ensure everything was ready when the family finally arrived.

There are other times when we share in the family’s feelings of anger and sadness. And sometimes we feel helpless, when there are limits on what we can provide and decisions are out of our control. Sometimes our emotions are directed at the system itself.

BLOOM: How do you not get stuck in that frustration?

Andrea Hoffman: I try to focus on what we can do. We have an opportunity to support families and make a positive difference during what may be one of the most challenging times of their lives. And the families show incredible strength, resilience and dedication. Families trust us with a lot of responsibility, and share a lot of information, and it’s an honour to support them. That said, you can’t help but share in their sadness, sometimes, or in their frustration or anger. And I think that’s okay.

BLOOM: Is there anything specific you do to help cope with those emotions?

Andrea Hoffman: I work in amazing teams. There’s no way we could do this work on our own, without the larger team working together. When we’re dealing with a difficult situation we often talk together. We debrief as a team and we support one another. We acknowledge the emotions and the challenges, so we can continue to provide the compassionate and empathetic care our clients need, without necessarily carrying it all ourselves. I’ve also tried to learn about mindfulness to help cope with some of the big emotions that come with this job. Having an understanding and supportive family also goes a long way in dealing with the stress of it all.

BLOOM: I understand you’re a black belt in karate. Is that something that helps with stress?

Andrea Hoffman: Yes. Having an outlet outside of work—an interest or a hobby—is really important. It’s something I do for me that is separate from work and family and all my commitments. Karate is very physical and I find it’s a release of energy—both positive and negative. It’s an opportunity to do something for me and it’s great for stress relief.

BLOOM: Is there anything you want parents to know?

Andrea Hoffman: I encourage families to ask questions and have a dialogue with their doctor. I always try to be open and honest with parents. I know that when families ask questions they’re looking out for the best interests of their child. I know parents are the expert in their child’s care and I encourage them to advocate for their needs. I learned early in my training that if a parent says something is wrong, something is wrong, and we need to acknowledge and respect that.

I also encourage parents to start thinking about Advance Care Planning for their child. We want to come at it in a holistic way—to understand the child in the context of their family and larger community.

On CCC we've started to meet with families to talk about how they've been affected by their hospital experience, and to talk about their larger goals, hopes and dreams for their child. We also try to understand their fears and worries. We know families have a lot of ‘what if?’ questions. They may have questions about what they would do if their child got sick in the future, or about the different parts of resuscitation and what it means to be “full code.”

We invite parents to talk about those questions with team members, rather than worry about them on their own. It’s important to reflect on what they might do in a future medical emergency, without the pressure of having to make decisions immediately. Different families will make different decisions, but if you don’t have an open and honest conversation, families don’t know what they’re consenting to, or the options available. It’s just one more way that we can help empower families to make choices that are right for them.

BLOOM: I understand your mother has an award named after her and her work as an ombudsperson? Did her sense of social justice influence your career choice?

Andrea Hoffman: I love this question. Both my parents had a huge impact on my life. My love of science and medicine came from my father, who is a clinical biochemist. On the other hand, my mother was the ombudsman at several universities and colleges over her career. She was also an investigator for the Ombudsman’s Office of the Department of National Defence and the Canadian Armed Forces. When she passed away in 2006 an award was created in her honour to recognize people in the defence community who go above and beyond to bring about positive and lasting change. She strived to do that on a daily basis.

My mother taught me about the importance of listening to everyone, as everyone has a story that is special and unique. Communication, and sometimes conflict resolution, is a critical part of what we do in medicine and I learned a lot from her. She taught me that as one person you have the power to help many, and that by changing the system you can help many more.

When my mom was sick in 2005, I learned what it was like to be on the other side of the health-care relationship. There were people who were just focused on doing their job and to them my mom was just another patient. But a handful of people saw her as an individual, and they showed care, compassion and empathy, making some of the worst moments a little less dark for her and our family. I was in medical school at the time and it had a profound impact on the kind of doctor I wanted to be. I try to remember that although this is what we do, day in and day out, for the family in front of us this is a life-changing time. I strive to be someone families feel helped to positively support them on their journey.

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Filming autistic swim team changed mom

By Louise Kinross

Swim Team is a feature documentary about the sense of community and joy three youth with autism experience swimming on a competitive team called the Jersey Hammerheads. It’s also the story of their parents and their extraordinary efforts to support children who have been written off by professionals and shut out by other families. The film was part of the ReelAbilities Film Festival in Toronto this month. BLOOM interviewed director Lara Stolman.

BLOOM: Why was it important to you to do this film?

Lara Stolman: I’m the mother of a child with autism myself. I was searching for swimming lessons for my son and I found this amazing story.

BLOOM: That’s so interesting, because I assumed as director that you didn’t have experience with autism.

Lara Stolman: I don’t think I would have seen it the way I saw it, and I don’t think I would have been granted the access I achieved with the families, if I hadn’t been the mother of a child with autism.

When my son was little he had no fear of water. When he couldn’t swim, I was worried he would just wander off and jump into a lake or pool and drown. I found Coach Mike and his wife Maria and they told me about their plans to start their own team. So from a story standpoint, I was there at the beginning, which was great.

BLOOM: The film includes many private and candid moments with the boys and their parents. For example, in one scene Robert, who is 16, learns he has autism. How did it work out that you were present for those?

Lara Stolman: I appreciate that question. It’s part of a documentary filmmaker’s job to gain the trust of the subjects. But in this case it was much easier to get to that point where everyone was comfortable with me, and willing to let me come into their lives with cameras, because of who I am as a parent. We had so much in common from day one.

BLOOM: Some of the most moving parts are when the parents talk honestly about raising their child with autism—including how isolating it is for them and the pain they feel when their child is excluded. What did you learn from the parents?

Lara Stolman: Being a parent of a child with autism I came in knowing a ton, but I still learned a lot. One of the reasons I felt so compelled to make this film was that as much as I had in common with these people, there was something I didn’t have in common: their positive outlook and their willingness to have high expectations.

I had come from a place where professionals said so many negative and terrible things about my child’s prognosis. I don’t think that’s unusual. Doctors tell parents of kids at the age of two or three that your child is never going to college, your child will never speak, your child will never take care of himself. When you hear that repeatedly, it’s extremely discouraging and defeating and can really impact the whole family in a negative way.

When I met Mike and Maria I was so struck by how positive they were. They heard the same negative things, but they persisted with their high expectations with their son. They wanted to see if their high expectations would rub off on the other kids and I believe they did, and they rubbed off on me too. I changed as a mom. I learned the importance of not giving up on your child, setting those expectations high, and not letting the other people around you give up on your child.

BLOOM: So many of the film’s scenes are magical because they’re shot underwater. How did you do that?

Lara Stolman: We had a director of photography who wore a wet suit and encased a camera in a water-proof casing and she swam with her camera. I also used GoPros and we experimented and placed them in different ways and had the boys wear them themselves.

BLOOM: The parents articulate really hard parts of their lives. Did their experiences mirror yours?

Lara Stolman: Now we’re really getting inside the story. No one has asked me this and I’m a little apprehensive. Of course I did all the interviews. I was on the other side of the camera, and I decided what questions to ask and which questions to edit into the film. I decided how to structure those answers into the film and how to fit the story into the film. My experience influenced it all.

I thought there were very important things that needed to be communicated. The film needed to communicate how hard parents work at helping their children when they have challenges, and how they’re working round the clock. All of the parents in this case had full-time jobs and one was going through a divorce.

It needed to show that sometimes financially for families it’s a burden or a hardship or impossible. It was important to convey that the services and supports aren’t sufficient, and that it can be very scary for parents when they think about what’s going to happen when they’re no longer around.

These kids are generally excluded or ostracized from so many things other families take for granted. The film was about a swimming team, but it could have been a film about a marching band or a theatre group. The point was that these are things that, if you’re a family with typical kids, you know they’re available to your family. And it’s not just for your kids, it’s for the family.

Sports is like the town square. Families can interact with one another and meet one another. In the midst of all of that is a lot of important socializing. If your child is excluded from those kinds of activities, you’re also excluded and isolated as a family. This swim team provided a much-needed sense of normalcy and community that these families hadn’t experienced.

I remember Maria telling me that Mike had never been invited to a birthday party and she’ll never forget the time she tried to invite people to a party for him and no one came. She cried when she told me that story.

BLOOM: I was moved by the interviews with Patty. She would be talking with a smile and then there would be tears running down her cheeks, but she would try to return to a smile. It made me think about how as parents we feel we have to always present a positive face to the world, because disability is so stigmatized.

Lara Stolman: I live about an hour away from these families, but in making this film I definitely became a part of their community and I fell in love with them and their kids. It was really important to me to show that even with a character like Kelvin, who represents a child that needs so much support, that he’s funny and lovable and talented and has things to contribute.

BLOOM: What was the most challenging part of putting the film together?

Lara Stolman: I think the hardest part was deciding what was going to be in the film and what we’d have to leave out. We had such great material, and there were such interesting families on the team. But I knew from the beginning we had to narrow it down. I had a clear sense that it had to be two to four characters in order to really tell an indepth story about these characters.

BLOOM: What do you hope viewers take from it?

Lara Stolman: I hope it inspires other families to set high expectations for their children, and I hope it inspires professionals to not make prognoses when there’s still so much that’s unknown about autism. I also hope the film serves to open the eyes of people who haven’t had experience with autism to the stigma and stereotypes that are still out there. And I hope it shows that young people with autism can have skills, they can be fun and worthy and valuable members of our community.

It’s so important that cinema reflects our lives. People with autism and developmental disabilities and all disabilities need to see their lives reflected in cinema. I hope this film helps in that respect.

BLOOM: I think it would have been hard for you to make this film if you hadn’t been the mom of a child with autism.

Lara Stolman: I have to say that nobody else could have made this film. As a mother raising a child who’s approaching his transition years, I saw that these were important problems that we should make the public aware of. I was aware of these public policy issues about how do we include people with disabilities—especially developmental disabilities—in our community, in the midst of a history where, forever, we’ve excluded them. It wasn’t that long ago that we shipped them off to institutions. What’s really important for these families is that their kids find jobs, and have some semblance of independence, and the film shows how difficult that is.

BLOOM: And even more so now with the cuts that are being proposed to Medicaid, which will affect so many families of children with disabilities.

Lara Stolman: It makes it even more urgent. The president wants to cut all of this aid. That would make a bad situation even worse.

To find out about upcoming screenings, visit Swim Team.

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How Western ideas about success fail disabled youth

By Louise Kinross

Much has been written about how using normal development as a rehab benchmark sets disabled kids up to fail and devalues different ways of being in the world.

Now a new study looks at how Western ideas that equate adulthood with independence, work and education marginalize young adults with developmental disabilities—and their parents.

“When transition policies and practices for disabled youth are shaped on achieving this ‘normal’ adulthood, how does that disadvantage youth who aren’t able to participate in valued ways?” asks Yani Hamdani, an occupational therapist who won first prize in the 2017 Bloorview Research Institute Pursuit Awards for her PhD research.

Yani analyzed three Ontario policies aimed at moving youth with disabilities into adulthood, and interviewed the parents of 13 young adults with disabilities like autism, cerebral palsy and Down syndrome. All of the young adults had an intellectual disability and some also had physical disabilities.

One of the most interesting findings of her research is that parents neglect their own lives and health to coordinate meaningful things for their adult children to do.

“We put this expectation on parents to raise this ‘ideal’ adult, but we don’t have anything in the policies to address what happens if the young person doesn’t get there,” Yani says. “These parents are so busy trying to create community life for their children that they don’t spend time with their friends, they don’t do things for fun, and they can’t retire when they want to, because they have to pay for programs and supports. Services are so incomplete that when children leave school the family has to run a five-day program to replace it.”

Yani says she became interested in her research because she used to develop transition programs for youth at Holland Bloorview. “We were starting to do a really good job of transferring clients to adult health care, but many parents I’d collaborated with later talked about the significant challenges they faced in creating a life for their child when they left high school” and services dried up.

Yani’s study used a critical policy analysis approach to “identify and unpack taken-for-granted ideas about disability and what constitutes a ‘proper’ adulthood, and how these shape policies and practices.”

What she found in Ontario policies and interviews with parents were implicit assumptions about a normal adulthood that position disabled teens as problems in need of intervention, Yani says.  

The transition policies—one from the world of rehab, one from education and one from developmental services—“place emphasis on normal ways of being, becoming and acting like an adult,” Yani says. For example, the education one “focused on the idea that almost all students will transition to work, further education or community living.”

These policies are well-intended and help some disabled youth set and reach goals for moving out on their own, going to university or working, Yani says.

But they exclude and marginalize those who can’t. “What is the experience of hearing that you need to be fixed for your whole life?” Yani asks. “How do you internalize that, in terms of who you are in society and what people think about you? While these policies aim to help, they perpetuate ideas about who is valued and who is not.”

One policy attempts to convey diverse ways of living as an adult, but refers to the goal of active citizenship. “What does active citizenship actually look like if a person is not physically or intellectually able to participate?” Yani says. “Is being inactive or passive less valued, and to be prevented?”

For young people who don’t develop typically, we need to think beyond the transition to adult services to health and wellbeing over a lifetime, Yani says. “We need policies and interventions that promote health and diverse ways of living a good life, and that recognize that the Western ideal of adulthood isn't possible or desired by everyone.”   

In thinking back to her time working with families on transition Yani says, “I needed more education and training on what a good life could look like if a person wasn’t going to go to work or college. And I needed to be able to talk about these possibilities in a way that didn’t imply they were less valuable than traditional paths.”

Yani says clinicians need to start talking with families about unconventional futures for their children. “We need to talk to families about a variety of ways of living well, and what they might look like.”

Yani says her findings need to be shared with policy makers and to be part of the dialogue at the beginning of research on transition.

Instead of looking at disability as a problem that needs to be fixed, Yani says we need to embrace diverse ways of living, and view disability as a kind of difference, like we do race, gender or sexual orientation. “We need to free people from social ways of thinking that, left unquestioned, marginalize or disadvantage them.”

Yani was surprised that despite the extraordinary efforts of parents in her study to support their adult children, they didn’t describe this unpaid work as onerous. “There’s a social pressure for these parents to create these lives for their children and to take on the stress, almost without complaint. Our policies are silent on the mental health and social consequences of that for parents.”

Yani notes that some parents did use the word “burden” when describing their fears about care for their disabled child falling to a sibling. “It’s not proper for a parent to say that they feel burdened with this situation, but they do talk about not wanting to burden another child. I found that really, really interesting.”

For youth with developmental disabilities, Yani says we need funding and services that focus on family wellbeing over the lifespan. “Not all parents and youth want the same things, so there isn’t one answer. That’s why we need very flexible policies and supports.”

Yani Hamdani (below left with scientist Amy McPherson) completed her PhD in Social and Behavioural Health Sciences in 2016 at the Dalla Lana School of Public Health at the University of Toronto. 

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'When I'm swimming, I feel normal'

By Louise Kinross

Swim Team is a gorgeous documentary about a competitive New Jersey swim team made up largely of Latino and Asian youth with autism. It focuses on three of the team's stars as they prepare for competition. "I'm not like other teenagers," says one of these boys. "I'm autistic. When I'm swimming, I feel normal."

We also get to know the boys' parents, who talk about their experiences raising them and their frustration with a lack of school preparation and support as they enter adulthood.

The film was shown at Holland Bloorview a week ago as part of the ReelAbilities Film Festival.

I'm setting up an interview with director Laura Stolman. Stay tuned!

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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.

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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.

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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.

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