Lived experience 'helps me go to the darker places with families'

By Louise Kinross

Holland Bloorview social worker Val Lusted has spent almost 20 years working with youth with brain injuries caused by illness or trauma, and those hospitalized for rehab after bone surgeries or spinal-cord injury. Of course, that also meant working with parents who were under extraordinary stress and emotional upheaval. Val has always been a dear friend of mine, and I recall several times when, at my urging, she stepped out of her comfort zone to do live TV interviews about brain injury on behalf of Holland Bloorview. Thanks Val! With Val retiring next week, we took a trip down memory lane.

BLOOM: How did you get into the field?

Val Lusted: I knew I wanted to be in the helping professions during my high school years. I just had a sense that my personality was such that I liked and enjoyed being in a helper role.

BLOOM: I understand your first job here was in a different capacity?

Val Lusted: When I was in my undergrad at Ryerson, I had a part-time job as a therapeutic recreation staff at what was then the Bloorview Children’s Hospital. Back then it was a chronic-care hospital, and I worked on the weekends. I ran different programs for adolescents. One was a baking group to help the kids work on their fine motor skills. I remember one day we were trying to bake bread and we didn’t allow enough time in between to let it rise, and the bread came out only a couple of inches high. We also took the kids swimming in the pool. I had my F-class licence so I drove the Bloorview van when we’d take the kids to Fairview Mall to practise independence.

They knew I was studying to become a social worker, and they informally shared that they didn’t have a lot of respect for the profession. I think they felt abandoned by their families at this chronic-care institution, and they didn’t feel that their social worker had leveraged any other life for them.

I took it to heart as a challenge about really being able to connect with my clients down the road, so I could understand how I could best be of service to them. It didn’t dissuade me from my professional path, but it highlighted for me that it wasn’t going to always be easy to engage clients in a meaningful way.

BLOOM: What areas of the hospital did you work in as a social worker?

Val Lusted: For 15 years I was with the family support service, working with adults over age 16 with acquired brain injuries in the community. It was a very tight community and a very unique setting to be able to go into people’s homes or schools or places of work to help them carve out new meaning after rehab discharge. When that program ended, it was a real loss to me and my identity. For the last four years I’ve worked with inpatients and day-patients on the SODR unit.

BLOOM: What is a typical day like now?

Val Lusted: One of my primary roles is to chair family team meetings, to offer pre-admission orientations to families, and to provide individual counselling sessions, often for parents at the bedside around caregiver coping. Occasionally I also work with the teens. The other general function is offering various groups and workshops for clients and parents.

BLOOM: What were the joys of your work back on the family support service team, and now?

Val Lusted: In the family support service you could establish a really intimate relationship, because you had the privilege of coming into people’s natural environments. It’s also a different lens when you offer psycho-social support by following people over a long period of time.

On SODR, I work with some clients with pre-existing disabilities, and some who have new diagnoses or traumas. The joy for me is being able to walk that part of the journey with them. They often come in to the unit shell-shocked and overwhelmed, and some start to feel trust in the therapy team as they progress through rehab and they start to explore what I call their new normal. I would be lying if I said everyone walked out emotionally well-adjusted to their current state, so I seek out other support in the community for their journey after discharge.

I want to give a shout-out to the SODR team. It’s a very busy unit with high volumes and increasing complexity of children’s medical, therapy and psychosocial needs. It’s a very dedicated team of clinicians and being able to witness true collaboration in working with these complex demands is also a joy.

BLOOM: What were the greatest challenges of each area?

Val Lusted: On the community-based side it was the traffic [laughs]. As the service delivery model changed, when they brought in centralized scheduling, the clinician lost some of their autonomy at being able to manage their caseload priorities and appointments. They were evaluating the usefulness of the service based on a clinic model with productivity targets.

On SODR, I would say the challenge is the volume and complexity of clients vis-à-vis the existing psycho-social resources. 

BLOOM: What emotions come with the job?

Val Lusted: Inspiration, gratitude, humility and kindness. There is also the heaviness of the work—call it vicarious trauma if you will. Sometimes feeling overwhelmed, sometimes feeling powerless, sometimes feeling frustrated—more with systems gaps than with the client or families themselves.

BLOOM: How do you manage the heavy emotions?

Val Lusted: I try to practise work-life balance, some days more effectively than others. I go out with friends and family and have activities and interests with them. I have a ladies walking group in my neighbourhood. Watching my son on the ice at the hockey arena gives me joy. I’m not very good at meditation. Music is my meditation, and I have gone on a few spiritual retreats. These aren’t religious. I’m seeking out a more grounded spiritual connection, most of which is my church is nature, time in nature.

BLOOM: Nature is healing. Have your ideas about disability evolved over the years?

Val Lusted: I have a personal, lived experience with the world of disability related to my husband Rick, who has been a quadriplegic for many years. I also have a son who’s adopted who has some invisible disabilities. I would say that those two have been my greatest teachers. 

That lived experience helps me be more compassionate, and it helps me to go to the darker places with families. Families need a safe place to go deeper. Some clinicians choose to stay at the surface out of self-protection, in my view, but it’s also a function of the faster pace of the work. If you have to see a client and get on to the next one in 35 minutes or less, you can’t open a can of emotional worms because you won’t have time to process it.

BLOOM: What have you learned from families?

Val Lusted: Resilience, in a word. The families that are able to explore their inner strengths, as well as their ability to reach out for help from others when needed, are the families that model resilience every day for me.

BLOOM: If you could change one thing about rehab for children, what would it be?

Val Lusted: It’s a metaphor—the mushroom needs to be turned upside down. It means the funding needs to be more adequately allocated to the community side of life, in order to support a longer-term rehab journey within a natural environment.

The other thing I’ve been thinking about a lot is that when the disability world can touch the mainstream world, that’s when we’re going to change the world, and create real opportunities for inclusion and belongingness. Instead of communicating to the converted, we have to educate people out there. The Dear Everybody campaign, if we can get that out in the mainstream, is a fabulous initiative.

BLOOM: What skills does someone need in your role?

Val Lusted: I think I started off as an optimistic person, and as I matured and gained various professional and lived experiences that touched the world of disability, I think of myself more as a realistic optimistic.

BLOOM: Do you mean that initially you were somewhat naïve?

Val Lusted: Yes. Green and naïve. 

As a clinician, you also need to be able to read and respond to the intense emotions of others, while being self-aware and reflective about how the work is impacting you, and being able to prioritize. There’s a certain level of flexibility and pragmatism that’s needed, and an ability to network and collaborate with others—both informally and formally.

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Meet Karmzah, a heroine with cerebral palsy and super powers

By Louise Kinross

Farida Bedwei is a Ghanaian software engineer who's launching a new comic book with a super hero who has a disability. Farida, who has cerebral palsy, loved comics as a child, but never saw any characters who looked like her. So she created Karmzah, a no-nonsense warrior whose crutches give her the power to fight, run, flip and fly. Karmzah will be available online on the Afrocomix app in the Google Play store at the end of October. Farida is on business in Paris, and we spoke over Skype.

BLOOM: How did you get the idea for Karmzah?

Farida Bedwei: I realized there wasn’t representation for super heroes with cerebral palsy. There are a few super heroes who have disabilities. But there are a lot of children and adults who don’t see their disability represented in the world of cartoons and comics. That’s why I decided to come up with this super hero. Growing up, I used to love the comics, but I never felt represented. So I decided to do something about it.

BLOOM: What do you hope readers take away from the comic about disability?

Farida Bedwei: For me, the most important thing is that having a disability doesn’t mean that that is your whole life. We tend to focus too much on what the person can’t do, and miss out on what the person can do.

For most of us with disabilities, we are going to have the disability our whole life, so we have to redefine the way we look at it, and make the best out of it and live our lives to the fullest.

Sometimes we tend to end up resenting our wheelchair or our other aids, because we feel they make us different from any other person. But these devices help us get the independence that we crave, so I made a super hero who gets her power from her crutches. Without her crutches, she loses her power, and becomes like anyone else with cerebral palsy.

I want children to learn how to take pride in the assistive devices they’re using, and not see them as something that is making their lives miserable.

BLOOM: How was disability viewed in Ghana when you grew up?

Farida Bedwei: There was a stigma about it, and there still is. We are very religious in Ghana, and when it comes to children who are born differently, people immediately attribute it to either a curse, or to something that your ancestors or your parents did wrong. That is a mindset that we have to change.

There are people who allow the perceptions of a society to affect their lives, but I’m not one of them. I didn’t let those things bother me.

BLOOM: Was it hard to sell other people on your idea about a disabled super hero?

Farida Bedwei: No, it’s something people have waited for. People are literally asking ‘When is it going to come out?’ because they want to buy it. These are not just people with disabilities or parents of children with disabilities. But people with no relation to disability who are interested in it, and say it’s about time.

I ran into Eyram Tawiah, the CEO of a local comic book and animation studio called Leti Arts at an event in August. We got talking, and I told him about this idea for a comic I had. That is how Karmzah came about, less than two months later.

BLOOM: Who illustrates the book?

Farida Bedwei: It’s done by Leti Arts. I wrote the script and the dialogue, and they do the illustrations based on my scripts.

BLOOM: Was it challenging to have someone else draw your characters?

Farida Bedwei: It was very easy. We have the same mindset, and they are able to make my vision come alive in a great way.

BLOOM: When is the first issue coming out?

Farida Bedwei: It will be available online next week in the Afrocomix app in the Google Play store. The print copy will be ready to be purchased in Ghana in the middle of December. Next year people will be able to purchase the print copy from other parts of the world.

BLOOM: I understand you are a software engineer and the co-owner of Logiciel, which sells a microfinance banking software used by over 200 financial companies in Ghana?

Farida Bedwei: Yes. These companies are smaller than banks, and give loans and financial services to people who run small businesses or don't have a steady income, and who don't qualify for loans from banks.

BLOOM: Do any of your skills as a software engineer lend themselves to launching a new comic book?

Farida Bedwei: No, they are two different areas of my life. They don’t intersect at all.

BLOOM: So is working on your comic book a bit of a reprieve?

Farida Bedwei: Yes. It’s something totally different. It gives me a lot of satisfaction that my life isn’t just about writing code. Sometimes you need to add something to make your life more exciting.

BLOOM: How often will the comic come out?

Farida Bedwei: We are planning on four issues every year.

BLOOM: Would you say Karmzah’s personality is like yours?

Farida Bedwei: I don’t know. I guess someone who knows me would be a better person to answer that. I try not to write about myself, but I guess eventually you end up adding a bit of yourself. Karmzah is a no-nonsense person who solves problems and fights bad guys.

BLOOM: What advice would you give parents raising children with a wide range of disabilities?

Farida Bedwei: I would tell them to treat their child as normally as possible, because although the child has a disability, the child is a child first. Enjoy them. We all want the same thing: we want to be loved and we want to feel that we can achieve anything in the world. As much as you can, give your child the freedom to be who he or she wants to be.

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Her son's stroke puts a Nunavut doctor on the other side of care

By Louise Kinross

Family doctor Madeleine Cole works at a 25-bed hospital in Iqaluit doing emergency medicine and delivering babies. She also flies in to remote Nunavut villages to run clinics for the largely Inuit population. But last year, Madeleine found herself on the receiving end of medicine. During an idyllic day of swimming at a Quebec cottage, her 11-year-old son Jayko (above) became seriously ill and was later diagnosed with a brain bleed. Jayko had four surgeries to repair a life-threatening aneurysm in his brain, but the repair caused him to be paralyzed on his right side. “That was the hardest thing that’s ever happened to me,” Madeleine says, noting that her own father died of a stroke when she was nine. After being treated at the Children’s Hospital of Eastern Ontario, Jayko came to Holland Bloorview for two months of rehab.

BLOOM: What was it like to be a mother and a doctor in this situation?

Madeleine Cole: Most hospitals in Canada are designed for acute-care, and what I learned more than anything else was how hard it is to get care once the child is over the original injury. I had to do a lot of work as a parent to advocate for stroke rehab, because I learned there’s a huge difference between the rehab offered to adults with stroke, and what we offer to children.

BLOOM: Can you give an example?

Madeleine Cole: Where an adult in Ottawa would receive six weeks as an inpatient with focused rehab, including weekend physio, there was a push to discharge us a week after Jayko’s aneurysm was repaired. As outpatients, we would only receive very limited occupational, physio and speech therapy on certain weekdays. That was inadequate for a child who’d had a massive stroke and complete one-sided paralysis, and it was vastly different from what an adult in Ottawa would have received.

BLOOM: So how did you get to Holland Bloorview?

Madeleine Cole: It was only because I did a lot of homework and put my advocacy in writing. Initially we were told he was too well for your program, that he had recovered too much.

While we have worked with many wonderful individuals in the system, the system itself often fails kids. In so many ways, geography is destiny. If you compare rehab therapy in Ottawa to Nunavut, it’s 10-fold better. But if you compare rehab at Holland Bloorview to Ottawa, at a program level, it felt a thousand times better. In the letters I wrote, I said I’m fighting for my kid, but I’m also fighting for all kids.

Something has to change with rehab for kids after stroke. I'm not sure when or how, but I'd like to do something about that. Maybe there's a role for me to write an article about that in the Canadian Medical Association Journal.

It's part of a physician's job to advocate for a better and more equitable health-care system. It was odd to find myself doing it for my own child. For families with lower health literacy and less social capital it would be so much harder to navigate the system.

BLOOM: It sounds like being a doctor in your situation was a great advantage.

Madeleine Cole: I think overall it has been, partly because with knowledge you can be a better advocate. But it was also helpful to me to understand the medicine and science and biology of what was going on, and to know the systems. That was good, because as a parent, you are the case manager. On the other hand, parents who don’t have a medical background might not quite 'get' how serious their child’s situation is.

BLOOM: Because you understand exactly what doctors are talking about, whereas a lay person may not?

Madeleine Cole: Yes. And I think sometimes not knowing for a parent can be protective, as long as your child is getting good care.

One of the hardest things about brain injury for caregivers in the health system is to balance honesty and not create false hope in parents, but to temper that with the fact that this is not mathematics—it’s not two plus two is four. Despite MRIs and imaging, you can’t entirely know what the endpoint of rehab will be. 

Whoever came up with your branding about possibilities is brilliant. When things are unpredictable, it's not helpful to shut doors.

One of the hardest things for me as a parent is not knowing how much to push rehab—whether it’s occupational therapy or physio, formal or informal—especially in a child, like all children, who needs to enjoy life.

BLOOM: How is Jayko doing now?

Madeleine Cole: We’re a year out in rehab and recovery and physically he can run, he can swim and gym is his favourite subject. He became left-handed, and went to hand camp at Holland Bloorview to continue to regain his right hand abilities, which was excellent.

At the same time, I have to allow myself to be sad, because he was a very, very artistic child before, and that’s difficult with the change in his fine-motor skills [cries].

In many ways he’s the same as he was—just a toned down or calmer version. He was an extreme extrovert, and he’s still really socially capable, and everyone likes him. There are cognitive changes that are subtle to people who don’t know him and largely invisible. School has become a challenge and I'm adjusting to it all. On endless levels, he’s completely wonderful and happy and I’m so grateful for that.

BLOOM: It sounds like you’re torn between being grateful for how well he’s doing and grieving what has happened.

Madeleine Cole: I think I find it hard to balance being positive and present-focused, and allowing myself to be sad to the losses.

I think there’s a combination of true grief for the loss of some of the things that probably won’t come back, but also trauma from the acute-care experience.

Everyone was shocked at how well I coped when we were at CHEO. We had no control, apart from advocating, and our child could die anytime—that was a real possibility. It was just letting go, and going day by day.

His acute-care was excellent, especially the intensive care.

But I wish acute-care hospitals had established peer support from other families, or concrete outreach to parents through a handout that says 'This is going to be very difficult for your whole family, try not to forget your child's siblings.' Or a phone number you can call if you need professional help. I think there's a lot to be said for learning from other families' experiences—in person and through stuff that they've written.

We had family in Ottawa and a huge circle of support—people who could bring us food or spend time sitting with our child, so we could get out or take our other kids places. I thought, over and over, about all the Inuit families we saw at CHEO who were a million miles from home, with no extended family. My partner and kids are Inuit.

I know that the experience of grief and trauma isn’t linear, and I tell myself it’s a positive thing that I’m able to cry now and be sad. I know the general pattern of families after these things should be in the direction of getting better, but there are always waves, and ups and downs.

BLOOM: What helped you cope when you were inpatients at Holland Bloorview?

Madeleine Cole: I really benefited from the green space, the ravine, and Sunnybrook Park. I brought my running stuff, and I’d run in the ravine. Being able to exercise and be in the forest.

The Family Resource Centre was good—and even that it’s called that is pretty powerful. I wish in acute-care that there was something that says ‘A child’s illness is a family’s illness,’ to validate how difficult it is for the whole family. I took out a bunch of books and read things in your Family Resource Centre. I also appreciated the mindfulness group and Anne Maria was an excellent social worker and support.

Art therapy for kids and parents, and visiting musicians, and hospital clowns were part of the incredibly good care that we experienced.

Over the long term, I’ve found arts and books and music help you cope. Songs that I often listen to that help me feel better, but also let me be sad, are Crying by Madison Violet and Bruce Cockburn’s Song 40 Years In The Wilderness. There’s also a super cool woman from Winnipeg called Iskwe, and her songs Healers and Soldier are quite awesome.

BLOOM: What was most challenging during your inpatient stay?

Madeleine Cole: One of the things I learned, and that ties in to being a better doctor, is how incredibly important, and disrupted, sleep is when you’re in a hospital setting. Because you’re sharing a room, there’s a lot of beeping and noise at night, and sleep wasn’t great. Because I have family who live in Toronto, we were able to switch to the brain injury day program after a month, and sleep at their house. To be able to sleep in a normal house, with extended family, was wonderful.

BLOOM: How did Jayko’s siblings cope?

Madeleine Cole: I knew this wasn’t going to be a short-time problem, so after Jayko became ill, we moved to Ottawa. It might have been forever, we didn't know.

Many families in Nunavut couldn’t do that. They’d have to leave their children with a grandparent. I was able to figure out schooling for my other kids in Ottawa, and the schools were supportive and helpful.

Jayko’s siblings coped incredibly well. I forced each of them to see a psychologist, or a child life specialist, once. Today, they’re really adjusting, and not worried and not sad. They talk about how Jayko is fine and happy. I’ll occasionally say ‘Don’t you see how he’s different?’ And they’ll say ‘Yea, he’s different, but he’s fine.’

BLOOM: Did Jayko ever ask why this happened to him?

Madeleine Cole: Yes, he did. But he knows that there’s nothing that he did, or that we did, to cause it. It was just bad luck—that some people are born with things different in their blood vessels. He knows that they were able to put some glue in his aneurysm, and close off that blood vessel. His neurosurgeon was great at showing him MRIs and cat scans and explaining things.

BLOOM: If you had to give three pieces of advice for other parents in a similar situation, what would they be?

Madeleine Cole: First, let yourself be sad sometimes. Second, actively look around for positive things—or beauty or goodness—every day. And as much as it may be difficult, try not to neglect your other kids.

BLOOM: What happens to families who have kids with significant disabilities in Nunavut?

Madeleine Cole: There's a real lack of services. When you have only two speech therapists for the whole eastern Arctic, they might have a visit to your community twice a year. There are no sidewalks here and no public transportation. Iqaluit is not friendly to people in wheelchairs. If I had a child with high needs, I would have to leave the North, even though I would be super sad about it.

On a positive note, I have found rural and remote communities to be more accepting and inclusive of people with disabilities. Nunavummi Disabilities Makinnasuaqtiit Society is one resource to families in Nunavut living with disability.

BLOOM: Are there ways in which you approach things as a doctor differently now?

Madeleine Cole: When it feels right, I share some of what I've gone through as a parent in the last year. I know that my ability to empathize with patients has deepened through many experiences, such as miscarriage, birth, death and illness and disability in loved ones. Having been there myself I hope makes me a better physician at some level. I hope I can be a better ally and advocate to families living with disability.

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'My Beijing' is about the adventures of a girl and her grandfather

By Louise Kinross

My Beijing: Four Stories of Everyday Wonder is a gorgeous watercolour children's book by Nie Jun that was released in September.

According to Kirkus Reviews: "A young Chinese girl and her grandpa navigate life's challenges and joys in a small neighbourhood of Beijing. In this graphic-short story collection, the author introduces readers to Yu'er, a girl with an unspecified physical disability that limits her mobility, and her loving grandfather.

The first story opens with her dream of becoming a champion swimmer and a belief strong enough to carry her above her naysayers. From there, readers meet a boy who helps her fight off bullies, encounter the fantastical properties of an old mailbox, and finish by witnessing Yu'er's reconciliation with a grumpy neighbour. Whimsical and sweet, this will remind readers of animated movies such as My Neighbour Totoro and Kiki's Delivery Service."

BLOOM reached out to the publisher about getting an interview with the author. In the meantime, enjoy these images.

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My daughter is not an animal at the zoo

By Christina Herbers

We saw pandas! We saw lemurs! We saw bears and zebras and hippos.

We were just a family visiting the zoo.

And then we heard it: “Mom, I don’t like her face.” And, “Dad, what is that face?” And we saw you shooing your kids away from us, as if we were somehow contagious. And oh, the staring!

Yep, this still happens to us. In fact, it happened on our summer family trip to the Calgary zoo.

On a brighter note, there was an older man who came up to my husband and shook his hand. He told him that the umbrella that we use to shade my daughter Jaina’s eyes from the sun had shifted, and that her eyes were in the sun. To him, I say thank you. Thank you for not being afraid of us. Thank you for seeing us. Thank you for holding a door open for us. Thank you for teaching your kids and grandkids that it’s okay to talk to us! 

Questions are a natural part of human behaviour. So maybe it’s not your children's questions that are the problem, but that you don't want to hear the answers?

How can your child know the answer to “what is that face?” if you don't ask me? If you ask, I will tell you about the car accident we were in when I was pregnant with Jaina. She isn't able to move her face that well because of her brain injury. She isn't able to smile. She isn't able to close her mouth. She suffered from a brain injury before she was born.

She has always been this way. 

She is also mellow and calm and quiet.

Talking about why my daughter is different from the rest of us may be natural for your kids, but please know that we hear you. Respect us.

Teach your kids that we are all different. Different colours, sizes, genders, sexual orientations, ages, beliefs and abilities. Teach your kids that it’s okay to be different. I can’t think of any two people who are exactly the same. Can you? Even the pairs of identical twins that I know who look the same have their own individual personalities.

Please don’t treat my daughter like a caged animal at the zoo. Don’t stare and comment and point and judge. Talk to us. Ask your questions, and take the time to listen to our answers.

Let’s work on seeing each other for who we really are. Because in the end, aren’t we all just people, trying to make it through this journey called life?

Share your thoughts below. I’d love to hear from you!

Did you like this story? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

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Weight 'talks' leave autistic youth feeling blamed, shamed

By Louise Kinross

Obesity in children is one of the most serious public health challenges according to the World Health Organization. Children with autism are more likely to have higher weights because they’re often less active, can have unusual eating patterns, and may take medication that causes significant weight gain.

The literature encourages doctors to talk to children about the risk of unhealthy weight, but to date there’s been no research on how to do this without harming a child’s self-esteem. A new study in the journal Autism is the first to ask autistic youth themselves what it’s like to be on the receiving end of clinic talks about their weight.

Researchers interviewed eight youth seen at Holland Bloorview’s psychopharmacology clinic who take atypical antipsychotics to treat irritability and aggression. These drugs can cause a pound of weight gain a week, probably because they cause insulin resistance.

Most of the children aged 10 to 18 were interviewed in their homes after receiving a social story that explained who the researcher was, and what to expect from the interview. Patrick Jachrya was the lead author on the paper, which comes from a research program headed by senior scientist Amy McPherson. We talked with Amy.

BLOOM: Why was there a need for this study?

Amy McPherson: This study came about after a few years of Evdokia Anagnostou and I talking in the coffee lines at Holland Bloorview about the work I do on weight in kids with disabilities.

Evdokia, who co-runs our Autism Research Centre, felt my work was much needed in working with children with autism, especially those she sees in the psychopharmacology clinic. One of the side effects of the drugs these children are on is considerable weight gain. Evdokia was having conversations with children and families about this and felt she didn’t have the training or support to know how to approach these talks.

BLOOM: What were the key results?

Amy McPherson: Generally the kids found weight discussions very anxiety provoking. They were very nervous about having these conversations, especially if the topic came out of the blue and they weren’t expecting it. Trust was an important part of a relationship to have these discussions without distress.

Children had often seen many health professionals before coming to Holland Bloorview. Unfortunately, all participants described having experienced weight stigma from clinicians (who very likely didn’t intend it). They said they felt the stigma, and it made them afraid to talk about their weight because they were expecting to be made to feel very badly about it.

BLOOM: How does weight stigma in the wider world influence these talks?

Amy McPherson: It’s fair to say that the youth had internalized the societal message that smaller bodies are better and desirable and healthy. This had often been reinforced at home by their parents, and also by their doctors and nurses, who they see quite regularly. That’s the world we live in. There was some evidence that they had started to perseverate on losing weight, and that it became a preoccupation.

BLOOM: To what did the doctors attribute their weight gain?

Amy McPherson: We know that many doctors and nurses assume that kids are eating too much and not exercising—even though medication likely has the biggest effect. Children were made to feel lazy and blamed. They feel like they’ve failed, because they’re being compared to typical weight charts. Families might be told ‘your kid is just off the charts.’

BLOOM: Even though those charts aren’t made to reflect weight gain you would expect as a drug side effect?

Amy McPherson: Yes. It’s viewed as a personal failure and within the control of the individual. Even though we know that weight is affected by so many things beyond the individual.

BLOOM: Some of the participants described professionals scolding them and trying to scare them. Why doesn’t that approach work?

Amy McPherson: How long have you got? We know many health-care professionals think that they can shock people into losing weight. The science tells us that this approach doesn’t lead to weight loss.

BLOOM: What does it lead to?

Amy McPherson: Weight gain. It can increase poor eating habits and overeating and binge-eating. And when children feel blamed and shamed, they don’t feel like going to the gym and working out. They avoid people. It also works on the stress hormone circuit, so that can lead to weight gain. Blame and shame have absolutely the opposite effect of what health professionals intend.

BLOOM: It struck me that the youth described incredible anxiety about their weight, and especially if they didn’t realize the doctor was going to bring it up.

Amy McPherson: Kids with autism often feel quite comforted by routine and knowing exactly what’s going to happen, so this is a particular population that may benefit from a more structured approach to talking about weight.

BLOOM: How would that look?

Amy McPherson: The number one question is to ask permission. ‘Is it okay if we talk about your weight today?’ Or even better, something like ‘Is it okay if we talk about how you can stay healthy and energized?’ If they say no, you can ask if it’s okay to talk to their mom about it. By focusing on growth and health, instead of weight, clinicians can make it a regular part of discussion and then it’s expected, and it takes the stigma out of it.

BLOOM: It was fascinating that the youth said it made them angry that they perceived doctors and nurses as trying to change them.

Amy McPherson: We’re always trying to fix and change. One of my favourite lines is when clinicians say: ‘All you have to do is this…’ By taking that approach we’re putting the sole responsibility onto the individual, and not recognizing the many uncontrollable factors that lead to higher weight. We don’t know how to treat childhood obesity generally, so we’re often very unrealistic about what we’re asking children with disabilities to do, given the complexity of their lives.

BLOOM: Yes, if losing weight was a simple matter, there wouldn’t be an industry making billions of dollars off it.

Amy McPherson: We’re often asking families to fundamentally change how they function and not recognizing what a huge thing that is.

BLOOM: I guess in many cases families feel that the entire family has to change their eating habits?

Amy McPherson: Yes. While promoting healthy habits across the family isn’t necessarily a bad thing, with children with autism, food is often used for good behaviour. So if a family has found a way to manage behaviour so that everyone can be happy, we’re asking a lot to take that away from them.

Families feel profoundly guilty that they’ve given their approval for their kid to go on medications that lead to huge weight gain. And to be fair, heath professionals often have a lot of moral distress that they prescribe these drugs. Unfortunately, they’re often the only thing that’s reduced a child’s self-harming and enabled them to function, for example, to go to school.

BLOOM: So there isn’t really an alternative. Youth in your study said they felt negative when professionals used the words fat, obese and overweight to describe them. Interestingly, they said when language like that was used, they immediately tuned out what the person was saying.

Amy McPherson: We’ve done quite a lot of work on language in our interactive casebook on how to have conversations with children about weight and health. Phrases like higher weight and bigger body, which are purely descriptive, may be helpful. But there isn’t one word that you use with everyone. Clinicians need to talk to families about terms they find acceptable.

BLOOM: In what way did the youth feel clinicians stigmatized them?

Amy McPherson: By making it seem like a personal failing, and the perceived assumption that they were being lazy, eating bad food and not exercising. This was upsetting given the huge role of medication in their higher weights.

BLOOM: These medications were causing dozens of pounds of weight gain, right? Now just a few pounds?

Amy McPherson: Yes, for some kids it could be an increase of 20 to 30 pounds. There are risks associated with higher weights: they can cause a metabolic syndrome that’s a precursor to chronic conditions like Type 2 diabetes or heart conditions. But the discussion can’t centre just around those extreme cases. People of many body sizes can be healthy.

BLOOM: How did the clinicians usually tell kids they could lose weight?

Amy McPherson: Eat less, move more. All you have to do is…

BLOOM: The study talked about how these children became obsessed with their higher weights, and this made them feel bad about their bodies.

Amy McPherson: Many had huge self-esteem issues. They felt they had to achieve a perfect weight. They knew it would please people if they lost the weight, but they couldn’t do it.

BLOOM: What advice can you give health professionals on how to approach this?

Amy McPherson: In our casebook, we list a number of sentence starters that clinicians can try out. Instead of talking about a child’s ideal weight on the Body Mass Index (BMI) chart, they can talk about a child’s best weight—which is the weight a child is at when they’re living a healthy life that they truly enjoy. They need to know that there are many ways of being healthy.

BLOOM: What are next steps for the research?

Amy McPherson: We’re using the casebook with our autism clinicians here and asking for their feedback on how they’re using it in their clinical practice. In the future, we’ll do a broader implementation study involving a number of different children’s clinics.

A related study in Autism Research includes interviews with the same youth, as well as their parents and health professionals. Notably, professionals said they didn’t have sufficient training to feel confident in identifying and addressing higher weights in children with autism.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

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How vulnerable brains find workarounds is this scientist's passion

Photo and interview by Louise Kinross

Dr. Tomáš Paus is fascinated by brains—not individual brains, but the study of hundreds of thousands of them. As a neuroscientist, he studies how our genes, and our physical and social environments growing up, influence our brains. Why do some children’s brains find workarounds to compensate for early adversity—such as premature birth—while others don’t? And in children with brain-based disabilities like cerebral palsy or autism, is there a way to build resilience that can aid brain function as the child grows?

Tomáš is the new director of Population Neuroscience and Developmental Imaging at the Bloorview Research Institute. His research program will rely on an accessible and child-friendly MRI coming to the hospital in 2019. Tomas did six years of medicine and a PhD in physiology in the Czech Republic, where he grew up, before moving to Montreal for a post-doc fellowship in cognitive neuroscience. We talked about his move into the world of children’s rehab.

BLOOM: First of all, what is developmental neuroimaging?

Tomáš Paus: It’s imaging the brain, from conception onwards, and there are no strict boundaries on what we call development. Some people are talking about development when the brain is in the womb, others say the first three years of life are most important. Others say development is certainly happening in adolescence. In the context of Holland Bloorview, we’re talking about the first two decades of life.

BLOOM: You've come from Baycrest Centre. What research were you doing there?

Tomáš Paus: I worked on adolescence, mostly by studying children from mainstream high schools, some of whom experienced early adversity—for example, whose mothers smoked during pregnancy.

Many people have experienced an early adversity, and their brains overcame it in some way. Is it because they had ‘good’ genes or a good supporting environment at home, or a socially supportive environment in their community?

What is it that will maintain someone in a healthy trajectory of brain development despite experiencing adversity? If we can learn what this resilience is, perhaps we can supplement it to people who don’t have it naturally.

BLOOM: Which population will you work with here?

Tomáš Paus: We don’t know yet. We’re not going to focus on a specific diagnosis or disability, but a type of adversity that may result in many different outcomes. For example, very preterm birth—if you’re born at least two months before term—puts you in a more vulnerable position.

We know that some children handle it well, while some children develop immediate disabilities such as cerebral palsy, and some may have a higher likelihood of developing autism. Some children may be fine all the way into their teens, and then be at higher risk of developing depression, bipolar disorder or psychosis. Other children may be fine on those lines, but have learning disabilities.

One idea is to develop a large cohort of 10,000 kids, between the ages of five and 14, that we would follow for 10 years. A group of them would have been born very pre-term, another group less pre-term, and another group at term.

BLOOM: Has this been done before?

Tomáš Paus: I’m not aware of any large, population-based study of children who were exposed to early adversity and may have a variety of outcomes that range from healthy brain development to having autism or cerebral palsy.

BLOOM: Why is there a need for such a study? 

Tomáš Paus: Some kids—no matter what you do at the time of an event like hypoxia of the brain—will have damage. Now we need to work out what we can do, at any time of their life, to help the brain achieve its potential. When the brain has to find a detour, some brains find the detour more easily than others. What does it depend on?

Does it depend only on the biology of the brain and the genes of the individual? Probably not. Does it depend on the family and what they’re doing and how they’re doing it? Most likely. Does it depend on the peers that the kid is encountering through childhood and adolescence, or not encountering, if there is social isolation? Most likely.

But we don’t know how it works, and I want to know how it works, because then we may be able to use this knowledge and provide a supplement. Perhaps it’s an app for parents, or a school policy that will improve integration, or a particular type of support at a particular time in the child’s life. It may be a technology that helps kids with disabilities to function better.

BLOOM: Isn’t there a danger in implying that resilience is largely up to the individual, or family? I’m thinking of some doctors who pushed back against the idea that burnout could be solved solely through building their resilience, rather than changing the system. 

Tomáš Paus: Very good point. That’s why we need to emphasize that the sources of resilience are at multiple levels. Some of them may be at the level of the individual. Others may be at the level of the household, and others are at the level of the community and education system. And even at the level of the individual or the family, you don’t want to have solutions that require their effort.

I know I’m lazy when it comes to exercise. So the only way I can build it into my schedule is if I do it automatically. So every day I walk from Lawrence subway station here and back, and that gives me my 12,000 steps a day. So the solutions for resilience have to be really smart, and nudge or guide you in a way. It can’t be that something beeps at you and says ‘Please do this.’

There's a book called Nudge that talks about how we can help people make better health choices by nudging them in the right direction. For example, in a subway, when you have a set of stairs and an escalator, how do you nudge people to take the stairs? You paint piano keys on those stairs and, somehow, subconsciously, people find it interesting to be walking up piano keys and it works.

BLOOM: You’re not suggesting that through resilience we would somehow remove a disability are you?

Tomáš Paus: No, we will not be able to remove the disability, absolutely not. But we may be able to find workarounds for living with disability. For example, take the work Tom Chau is doing here with external devices that help kids with disabilities to function better. We may be able to learn how those devices interact with the brain, and affect the brain, over months and years. We may be able to suggest how to tinker with a device to increase its usefulness.

BLOOM: Many people look at something like autism or intellectual disability now as a difference that has value, not just as a deficit. Will your work just measure kids’ brain function in conventional ways?

Tomáš Paus: There are current population studies with strong imaging components that are focused on the general population. They’re focusing on normal kids. We’re moving in the opposite direction.

We're opening the range of variability, and the range of possible outcomes, and there will be no judgment. I was just interviewed on CTV News and the reporter asked: ‘Will you be studying atypical brains?’ I said I don’t know what is atypical or typical. I don’t want to make any judgment about what’s normal or not normal. It’s the diversity that will tell me how it all works.

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

Tomáš Paus: The first is we need people to get excited about it, because it requires a commitment of 10 years. This would not be a study where you show up once.

We would bring the kids back every two years to do scans and answer questionnaires. We’re thinking about innovative ways to collect information on the behaviour of the kids and families by having them wear technology. So perhaps, with their permission, they would wear a smartphone that would collect information.

BLOOM: Why were you so interested in the brain in the first place?

Tomáš Paus: Who wouldn’t be? It came to me through psychology and psychiatry. I was interested in people’s behaviour. As a teen I read a lot of novels about people’s behaviour. I grew up in a small town not far from where Sigmund Freud was born and lived for a few years. But I think it was the human behaviour through novels that really got me going.

There was a large psychiatric hospital next door to where I grew up, and I would pass it every day. My teacher of biology in high school saw my interest, and encouraged me to go and talk to a new senior physician at that hospital. The physician said he’d just read about how Vitamin C can be good for attention, and asked me if I’d like to do a study on it. My father worked for a pharmaceutical company and helped me to set up the placebo pills. And my mother helped me with typing things up.

BLOOM: You mentioned that your wife, Zdenka Pausova, is also a researcher.

Tomáš Paus: Yes, she works at SickKids. Her primary interest is in cardio metabolic health. She’s an expert in genetics, but now she’s looking at the relationships between cardio metabolic health and obesity and brain health in teenagers and adults. She has a big National Institutes of Health grant to look at the relationship between inflammation induced by obesity and how it can potentially induce inflammation of the brain.

BLOOM: What are your first impressions of Holland Bloorview?

Tomáš Paus: It’s a very cheerful environment, and I keep running into people in the hallways and talking about things that interest me and interest them, so it’s very interactive. There are little barriers between the hospital and the research institute, which is impressive. It’s amazing how strong that integration is.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

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