Christmas cards flood in for hospitalized girl

Here’s a heartwarming story about Holland Bloorview inpatient Evelynn Nichols, 9, from Kathy Gravel, social worker on our brain injury unit. Evelynn, wearing her bravery beads, is pictured above with dad Stephen.

Nadine Pigeon is telling me that her daughter Evelynn is receiving Christmas cards from all over the world as we speak.

A volunteer parent in her Chatham hometown’s school lunch program heard about Evelynn’s severe stroke in September, and invited folks through Facebook & imgur to send Evelynn Christmas cards to boost her spirits over the holidays.

  

She’s now receiving 150 cards a day, bins' worth over these weeks, from as far away as Norway, Finland, Russia, Australia, England, China, all over the United States, and almost every province in Canada! Whole school classes are sending cards!

Sometimes people send funny things along too: One person said ‘I’m going to knock your socks off’ and sent socks! Evelynn can laugh and gosh, she thought this was so funny! The whole idea was to brighten and boost her spirits and her mom says this is sure working, as well as spreading the joy of the season all over the world.

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Program gets kids of all abilities up and active

By Louise Kinross

Igniting Fitness Possibilities (IFP) is a Holland Bloorview program designed to get kids of all abilities active in fitness and sports. It’s offered in partnership with community groups in Toronto for students in Grades 1 through 12. We spoke to Virginia Wright, Holland Bloorview senior scientist, to learn more. Virginia co-founded the program with Kelly Arbour-Nicitopoulos, assistant professor in the faculty of kinesiology and physical education at the University of Toronto.

BLOOM: What is the purpose of the program?

Virginia Wright: We’re building an inclusive program designed to inspire a passion for physical activity in kids who have disabilities and those who are typically developing who aren’t active physically.

There are many programs out there that are integrated, where you bring your child into an existing program and they adjust the program to fit the child as best as they can. We wanted to build the intention and curriculum of our program to be inclusive from the beginning. So in our program manual, you would see that each activity we do is designed with different ways that it can be adapted.

Many of the kids with disabilities tell us that they hate phys-ed class at school because it’s adapted only marginally, and in ways that make them feel belittled or singled out.

BLOOM: Which children can participate?

Virginia Wright: Our current groups have children with physical disabilities who use manual wheelchairs or walkers, as well as children with autism, developmental coordination disorder and intellectual disability. In terms of the children without disabilities, we’re looking for kids whose parents would say: ‘I can’t get him off the couch.’

In the pilot phase, we are looking for kids who can participate independently because we want them to be the centre of the interaction with staff, as opposed to having support workers or families involved. They need to be able to work comfortably in a group, to tolerate noise and stimulation, and to follow three-step instructions.

BLOOM: Why is there a need for this kind of program?

Virginia Wright: We have lots of great programs at Holland Bloorview, but where do kids go from here into the community? What if they don’t have a rehab centre like Holland Bloorview? We wanted to design an inclusive program we could put into the community in the first place, so all of the kids’ interactions and friendships and activities happen there.

We’ve partnered with Variety Village, the Miles Nadal Jewish Community Centre, U of T, the Abilities Centre in Whitby and the Pickering Soccer Club. They’re trying it out and telling us what they like about it. Ultimately the goal is to get programs going across the country.

BLOOM: How does the program work?

Virginia Wright: The first phase is called Quickstart. It’s 16 sessions for one hour a week after school. We’re helping kids develop fundamental sports skills, movement skills, phys-ed skills and game-play skills in a collaborative, non-competitive environment.

The program is run by fitness instructors and coaches who have trained in adapted physical activity, not health-care professionals. We’re teaching the skills you need for games and activities like martial arts or yoga or dancing. The kids work together on a team.

So one game might be that they have to get their bean bag down to the other end of the gym, but the rule is that everyone on your team has to have held the bean bag twice. They have to figure it out. At the end of four sessions they have to work together to create their own game and instruct everyone else in how to play it.

BLOOM: What is the second phase?

Virginia Wright: During Quickstart each participant is assigned a coach. The coach is at the sessions, seeing what you’re doing, facilitating activities and helping you set physical activity goals. The coach helps you figure out what type of activity you’d like to sign up for in the second phase, which is called Give It A Try.

In Give It A Try students pick an eight- to 12-week program, usually at the same accessible community centre IFP is offered at. A coach works with them to find something that is a good interest and ability fit. These are regular programs like basketball, Zumba, fencing, soccer or Tae Kwon Do.

IFP pays for this program because one of the barriers to families trying new things is being able to afford them. Once they’ve begun Give It A Try, kids continue to receive coaching about developing skills and setting goals for the future.

BLOOM: What kind of results are you seeing in kids who’ve completed the program?

Virginia Wright: We see large increases in kids' self-efficacy—in their confidence in trying new things and feeling they can do it, and in their pride of setting physical goals and achieving them. We have them fill out questionnaires before and after on their attitudes to physical activity, their confidence and a goals form on what they want to work on. They also do an advance motor skills test before and after and we monitor them with a Fitbit-like device. The kids say they have a much stronger sense of ‘I can do this’ and that physical activity is fun.

Igniting Fitness Possibilities is funded by Chillin’ for Kids, the Milos Raonic Foundation, The National Bank, GoodLife Fitness, the University of Toronto’s Connaught New Researcher Award and Holland Bloorview Kids Rehabilitation Hospital Foundation.

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5 things a doctor wishes parents knew about 'disabled' kids

5 things a doctor wishes parents knew about 'disabled' kids

By Dr. Peter Rosenbaum

1. The most important word and idea we can share with parents—from the beginning of their journey into “childhood disability”—is DEVELOPMENT. Children—including those with disabilities—change and develop; as parents we develop as our kids grow and change, and as a result we usually become more skilled as parents. Of course some children’s development will likely always remain compromised and therefore slow.

2. Parenting is a dance led by the children! If we can be attentive to our kids and adapt to their emerging skills and abilities, we parents will probably do okay!

3. Be ready to brag about your “disabled” child every day. Professionals spend too much time on problems, and what kids can’t do. Forget about conventional milestones and the “normal” way of doing things. Look at what’s working, what you like, and what makes your child special! This is important for every child, regardless of the extent of their impairments.

4. Don’t blindly accept what professionals (or even your family members) tell you your child will NOT be able to do. Professionals are not good at predicting the future of an individual child (though we wish we could) and anyway, the kids never listen to what we say!

5. Parenting any child is a marathon, and not a sprint. Keep at least one eye—and often both eyes—on the big picture, and the future. This helps us to plot a course to adulthood. That helps us help our children to become as competent, self-assured and self-confident as possible, regardless of how well they can do this or that activity or skill.

Dr. Peter Rosenbaum is the inaugural recipient of Holland Bloorview’s Medal of Excellence in Childhood Disability. Peter is co-founder of the CanChild Centre for Childhood Disability Research at McMaster University and was chief of medical staff here at Holland Bloorview from 1997 to 2000. He revolutionized the health model for children with cerebral palsy by developing the Gross Motor Function Classification System, which is used worldwide.

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Adapting toys to help kids get around

Every day this week we'll release one in a new series of short Holland Bloorview videos that convey the work we do and the spirit we bring to it. Enjoy!

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Dear doctor, therapist, nurse and teacher

By Louise Kinross

I was delighted and honoured to interview Julie Keon, author of What I Would Tell You, on Saturday at Holland Bloorview.

Julie’s book is about raising her daughter Meredith, now 11, who was born with severe brain damage. What’s unique about this memoir is that it’s structured around deep practical truths Julie has learned that will improve understanding between parents of kids with disabilities and the health professionals who work with them. 

A must-read chapter in the book is directed to clinicians—doctors, and also therapists, nurses, social workers and teachers. It includes 10 suggestions. I am including the first four below (the following belongs to Julie Keon and is copyright 2015). Please read these and share with the clinicians you work with.

1. I do not think you are God. There is far too much pressure placed on doctors. They cannot, and should not, have all the answers. Nor can they prevent catastrophic outcomes. As much as you deserve tremendous respect (as all of us do), you might be relieved to know that I do not hold you up on a pedestal or expect you to perform miracles. You are human, and I do not expect you to predict the future or a life expectancy. Nor do I expect you to know exactly what is going on with my complex child. I appreciate it when, with all of your years of experience and knowledge, you can look at me and tell me that you do not know the answer. I do not need either shaky hope or dark predictions. What I do need is the truth as you know it, regardless of whether or not you believe I am able to handle it.

2. Be aware of how long I have been on this path. If we are meeting for the first time because my baby was born just days or weeks earlier, please keep in mind that I am exceptionally fragile right now. I am not only learning that my child will have lifelong issues, but I am also in the middle of the postpartum period. Please be mindful of my tender emotional and physical state. If we are meeting years into this journey, do not assume that I have become accustomed to the fact that there is a DNR (do not resuscitate) form in the desk drawer in our living room, in the glove compartment of our van and in our daughter’s lengthy hospital chart. Please know that updating this form never gets easier. Speaking nonchalantly about our child’s life expectancy is insensitive, whether you intend it to be or not. It will always be a delicate topic for us. Knowing that we will likely outlive our daughter will never, ever be acceptable to us.

3. Meet me where I am. Please do not expect me to be where you are mentally or emotionally, for I am not there yet. I have not lived the sorrows and losses you have witnessed. I have not experienced even a fragment of what you anticipate for our future. I have only lived this life for a decade, and anything beyond this moment has yet to be lived. Use caution when sharing with us the medical outcomes of other families “like ours.”

4. Unless absolutely necessary, please refrain from asking me about my pregnancy and birth. Especially in the early days, months and years, having to explain how and where our daughter was born each time we enter an emergency room, hospital or medical clinic becomes redundant and is unnecessary, especially when our visit is to rule out an ear infection. It is emotionally invasive to make us relieve this intimate and personal experience with virtual strangers, simply in order to fulfill clinical checklists. Interestingly, by the time we have integrated this experience into that part of our brains that deals with difficult experiences, you will no longer have a need to ask.

Do these suggestions resonate with you as parents? Please add your own in the comments. Julie's book is available to be borrowed through Holland Bloorview's library.

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Grief? A friend? Don't miss this interview

I am delighted to be interviewing Julie Keon (right) about her book What I Would Tell You this Saturday May 9 at Holland Bloorview. You can still RSVP to the event here.

Julie’s book is about raising her daughter Meredith (above with dad Tim), who was born with severe brain damage. I’ve read many memoirs about parenting a child with disabilities, but this is the first one that’s packed with deep, practical truths. When you read What I Would Tell You, get ready to feel like Julie can see into your heart and understands when your courage for what some people call “extreme parenting” has run dry. 

As I flipped through the book, so many chapter titles resonated with me. Then I hit “Befriending Grief.” What? I’ve always resisted grief, pushed it down. The  thought of making it a friend that I welcome in for a cup of tea, as Julie suggests, was hard to imagine. Then I read the chapter and when I next felt grief I did what Julie said. And I realized that it did, indeed, change the dynamic, turning it into an act of great self-compassion. 

This is an excerpt from that chapter. Read the words carefully, and then when you feel the pain of grief, stay with it, as a friend would, follow these steps, and tell us what happens!

“Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly...When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home. You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice that it isn’t as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer.”

And later:

“Trust that the deeper you allow yourself to know your grief, the deeper the joy you will feel when grief's visits get further and further apart. There is no barricade large enough to keep grief out. Welcome it with open arms, serve it warm tea and sit with it without judgment, knowing that grief will come and then it will go, as long as you give it the attention it needs.”

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How the tyranny of 'normal' hinders rehab

By Louise Kinross

In 2012, 25 scientists from six countries came to the University of Toronto to talk about new ways of looking at rehabilitation for children and adults. The result is Rethinking Rehabilitation: Theory and Practice, a book co-edited by Holland Bloorview scientist Barbara Gibson.

BLOOM: Why is there a need for this book?

Barbara Gibson: Much of what we do in rehab is about helping people to thrive in their lives—sometimes as they are. But because what we do comes from a medical tradition, there’s an assumption that disability is a 'problem' that needs to be solved. Much of what we're doing in research is still trying to 'fix' impairments. This assumption structures what we do and how it’s funded. Even though we talk about how we’re interested in quality of life, participation and inclusion, rehab is mostly thought of as a branch of medicine and funded largely by government ministries of health. The message we unintentionally send in rehab is that the child or adult needs to change, and maybe that’s not always the right message. We'd like to help people to thrive or flourish or live well—something that’s central to the goals of rehab programs—by expanding our thinking beyond the underpinning of medicalization.

BLOOM: What would be a medical assumption underlying rehab?

Barbara Gibson: In one of the chapters, the author, who has spina bifida, talks about needing a hip replacement for hip pain. Over and over again, she had to fill out questionnaires that asked how difficult it was for her to carry groceries or to climb the stairs without a railing. These are standardized assessments we use all the time in rehab that assess physical function. She used a wheelchair and she said 'None of these questions apply to my life, why am I filling these out?' And the assumption is that your quality of life is lower if you have trouble walking up stairs, or if you use a cane. We're not trying to get rid of the medical, but to be reflective about how we use it.

BLOOM: It must be demoralizing to be constantly compared against a norm that doesn't make any sense for you.

Barbara Gibson: 'Normal development' is an underlying principle that's ingrained in children's rehab. The way we provide therapy is to help children approximate the normal developmental trajectory as much as possible. Having said that, we know most of the kids we work with won't be able to do that. We know from the beginning that they won’t achieve ‘normal’ functioning and yet we test them against these parameters all the time and send them to therapy and say your goal is to do 'X.' In the end the child and parents know that they didn’t reach these goals, that they ‘failed’ according to the tests. By comparing children to those normal milestones we set up children to not be successful and to internalize those ideas. And parents, too. What parent doesn't look to see if their child is following the milestones and not feel disappointed if they're not?

BLOOM: What would be a different way of looking at rehab?

Barbara Gibson: The last chapter is about how we teach people with new spinal cord injuries to use wheelchairs. It explains that this is more than learning a skill—it’s adopting a new way of understanding their body, and by extension, themselves. The authors ask you to imagine if you were in an accident and you emerged as a different gender, or a different race. What kind of therapy would you need to learn to become a new kind of person, while still having elements of the old person?

BLOOM: I read that chapter and it was interesting because they likened learning how to use a wheelchair to making it a part of your body. So the wheelchair is more than something mechanical?

Barbara Gibson: Wheelchair users tell us ‘it’s just part of me. I can’t imagine myself without it.’ And often they don’t like it when someone touches their chair because it feels like they’re touching their body. It's a different way of doing things and ‘being.’ It's about how you incorporate the wheelchair into how you feel about yourself. Someone with a congenital impairment has the same process. They grow up figuring out who they are, how they think about themselves, and the rehab intervention they get shapes that. We need to do a better job of helping people have a positive sense of who they are in the world.

BLOOM: I think our overfocus on independence often works against that.

Barbara Gibson: A new way of looking at things is the notion of assemblages, which I write about elsewhere. Instead of talking about independence we talk about 'what are the dependencies that can help people live well?’ We talk about a conglomeration of elements—the person, the wheelchair, their speech generating device, their mom, a house that's designed for them. So we look at whether this assemblage of elements enables practices or disables them. We don't analyze whether the person is independent, but whether their dependencies are enabling. The idea is basically that it's completely okay to use whatever you need to use.

BLOOM: How is the book structured?

Barbara Gibson: There are three sections. The first sets the stage with where we are right now in rehab and where we came from. One of the chapters is about the history of rehab, starting at World War II. The second part is about how we apply these ideas in relation to particular populations or topics, like identity. For example, one of the chapters is about whether the setting you're in makes a difference to recovery.

BLOOM: What kind of things would be different in settings?

Barbara Gibson: We talk about therapeutic landscapes and the messaging in the environment. For example, is it a place for 'sick people' or does it enable you to think about what's new in your life and to think about your identity in new and different ways? Does it repress emotion? Sometimes patients are made to feel that they can only express positive emotions with professionals. You know, 'we're all cheerleaders here.'

BLOOM: There is sometimes that pressure to remain positive no matter how you're really feeling and that's exhausting.

Barbara Gibson: Setting is not just about the physical, but also how the environment is structured and how scheduling works. The last section of the book is about if we take this seriously, what would we do? If we rethink rehab, what might it look like?

Rethinking Rehabilitation can be borrowed from the Holland Bloorview library. It’s targeted to researchers, clinicians and students, but will also be of interest to families. The Canadian Institutes of Health Research and the Health Research Council of New Zealand funded the event at the University of Toronto that brought the 25 researchers together.

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Dutch student heads home with new vision of advocacy

By Megan Jones

In February, 23-year-old occupational therapy student Anna-Lena Burdick arrived in Toronto from the Netherlands for a 14-week study placement at Holland Bloorview. While here she says her perspective on working with children with disabilities shifted dramatically. She learned about the concept of advocacy, and the role health professionals can take in being a voice for their clients. In the Netherlands the idea was one she’d never considered. There, she says, the concept isn’t widely embraced, and, in her experience, students aren’t taught how to become advocates for their clients.

Below, Anna-Lena, who grew up in Germany, shares her experiences and insights as a student working at Holland Bloorview and why she believes clinicians need to back their clients inside the clinic and out.

BLOOM: How long has your work focused on disability?

Anna-Lena Burdick: Not very long. I started to focus on disability when I began studying occupational therapy at university three years ago. Before that I wasn’t really exposed to people with disabilities. I’ve always liked working with kids. But Holland Bloorview was my first real exposure to kids with special needs.

BLOOM: You travelled far for this placement. What made you choose Canada?

Anna-Lena Burdick: Back in the Netherlands, the first couple of years of study are theoretical. You spend a lot of time learning about frameworks and different models of care. Many of the frameworks we learned about were developed in Canada, and a lot of our practice is based on what this country is doing already. You have a leading role, from my perspective. I wanted to see the best example of occupational therapy in practice. And plus, I also knew that Holland Bloorview was a leader in pediatrics and rehabilitation.

BLOOM: One thing you discovered here was the concept of clinicians acting as advocates for clients. How did that come about?

Anna-Lena Burdick: I was approached by my supervisor Darlene Hubley and she asked if I would be interested in working with her on a research project on the topic. She explained the concept of advocacy to me. It wasn’t something I had heard of before. It was totally new to me. Immediately I found it interesting and told her I would love to participate.

But when I first started I didn't know how to translate the word 'advocacy' into Dutch and German and it was difficult to communicate the idea of the project without using the English word.

I looked up 'advocacy' on Google Translate in Dutch. There are other words in Dutch that are similar, but not the same. The concept of advocacy never came up before in classes at my university. The term wasn’t mentioned, and neither was the idea of the role we might have ourselves.

Fully-trained clinicians in the Netherlands may understand the concept and know when they have to do it. But from a student’s perspective, I feel that we need some more guidelines. We need professionals to mentor us and tell us, “Here is a good example of a situation where we need to advocate. Here are the steps we can take to advocate for this client.”

BLOOM: Tell us a bit about the research work you’ve been doing.

Anna-Lena Burdick: We ran a series of interviews with a variety of people: students and clinicians, educators at the University of Toronto and one of the parents from the Family Resource Centre at Holland Bloorview. We were trying to figure out whether people were aware of their potential role as advocates, how professionals integrated advocacy into their work and whether students were aware of how to do it.

On a personal level, it was very interesting to see what each of their perspectives were, and to gain more of an understanding of what I should be taking on as a junior professional.

BLOOM: What did you take away from those interviews?

Anna-Lena Burdick: You can advocate on a micro level. For example, say the child you are working with needs special support at school. You could write a letter to the school’s administration explaining why it’s important the child get access to a particular program or therapy.

Or you can advocate at a higher level. You could try to influence the law. Even something as simple as noticing a building in your community that isn’t accessible for people with wheelchairs, and lobbying the government to make that space accessible. These may seem like small things but they can help others to achieve the fullest possible quality of life.

BLOOM: Why is it important for health workers to be advocates?

Anna-Lena Burdick: As occupational therapists, we take a holistic approach to patient care. We try to focus on the client and their individual goals. We build a pretty good idea of what the person needs, what their strengths and challenges are. But we also look at the environment they’re in. We try to see what barriers exist and how we can modify situations to help the client participate as fully as possible. We’re very aware of our clients’ everyday lives. We have such a comprehensive view of their needs and their goals. That makes us great candidates to advocate for them.

As a [clinician], you can also teach your clients to advocate for themselves. That can help them achieve more independence, which is a very important point, particularly from an occupational therapy perspective.

BLOOM:  What is the most important thing you’ve learned here?

Anna-Lena Burdick: The experience broadened my horizon a lot. I learned not always to focus on diagnosis. A diagnosis helps give an idea of the strengths and difficulties the child might have. But it has limits because each person is different. As a student it can be easy to get stuck on the diagnosis. But it’s very important to look at the child and their family as a whole, to focus on what that individual child’s strengths and [challenges] are, and on their particular goals and how to help achieve them.

I also love the idea of a family-centred focus. I think empowering families by making them a part of the team and a part of the child’s treatment is so important. I also realized that you always have to be aware that parents can have different goals than the child. And it’s important to listen to both. These two ideas were very new to me.

I’d like to go back to my university and encourage other people to think about advocacy and to become advocates themselves. I don't think many students know a lot about it. I want to try to inspire them with what I learned.

BLOOM:  How would you describe Holland Bloorview?

Anna-Lena Burdick: I think it’s just an amazing place. My supervisors were very focused on my learning goals. I feel as though they wanted my input and appreciated my perspective as a student. I also felt welcome as an international student. It seemed as though everyone wanted to get to know me and my story. It was a great feeling, and I’m very thankful for that opportunity.

Holland Bloorview has such a leadership role in children’s rehabilitation. I got the sense here of how important it was to help children reach the fullest quality of life.

Anna-Lena (bottom right) presenting her research work with Darlene Hubley, interprofessional education leader and Anna-Lena's placement supervisor.

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A son's injury prompts a dad to give back

By Louise Kinross

In 2011 Amir Karmali’s son Kaylum was accidently kicked in the head during a soccer game. The next morning he couldn’t walk and was hospitalized. Two days later doctors said Kaylum had suffered a stroke.

“They said they’d never seen that type of soccer injury before,” Amir recalls. “I spent the next eight hours on top of my son’s bed crying and watching him while he slept.”

Kaylum began intensive therapy as a daypatient at Holland Bloorview. But just when he was improving and about to be discharged, Amir was laid off from his job. “I couldn’t make sense of why this had happened to me. First my son getting injured, then being let go from work. I crashed and experienced a lot of stress, anxiety and depression. I googled ‘how to deal with stress and anxiety’ and a few things came up: meditation, exercise, and helping others. I decided there was a greater purpose for me, that if I didn’t use this experience to help others it would never make sense. I needed to help others make change.”

This week Amir was recognized with other Holland Bloorview staff for his role in engaging parents in the creation of clinical simulations that are used every month to train staff and students in client- and family-centered care. The team received one of Ontario’s 20 Faces of Change awards from The Change Foundation for its “patient engagement and family-focused change in the province’s health care system.”

It reflects the critical role Amir has played in building Holland Bloorview’s family leadership program, which he chose to participate in after his son’s accident as a way of giving back.

The family leadership program gives parents a voice on hospital decision-making bodies, as faculty at education events and as mentors to other parents raising kids with disabilities.

Amir joined as a volunteer on our family advisory committee, then applied for a part-time position managing the family leadership program—a radical departure from his background in the restaurant and corporate world.

“I wanted to help people. I didn’t want to let my son’s experience define us in a negative way. I vowed to use it to be a part of making change at Holland Bloorview. Yes, this happened to my son and my family was thrown a curve ball, but I wanted to hit a home run.”

Amir now works full-time as a family-centred care specialist on Holland Bloorview’s family leadership program, which has over 120 client and parents members.

“Family leadership is about family engagement, empowerment and activation,” he says. “It’s the program that brings the families’ perspective, voice and wants and needs into all of our discussions to ensure our programs and services meet their needs.”

Amir’s background in human resources and education gave him the perfect skills for recruiting and training parents, then matching them with projects in the hospital and ensuring that staff know how to “authentically engage our families. We want to know how our family will make a difference. They’re not there as a rubber stamp. I work with staff to define the purpose and goals of the family role and to set clear expectations.”

Amir says the key to the program’s success is making great matches. “We didn’t place families that we didn’t have. We had no problem saying no, we don’t have a family that matches that skill set or has that experience or has used that service. We also ensure that our families are in the right place to give solution-based feedback to the hospital because the program isn’t about advocacy or a place to vent. We want to learn from their good and not so good experiences.”

Amir says Holland Bloorview has invested in family partnership, hiring him full-time, dedicating other resources and changing the culture of how it makes decisions. “Nothing happens in here without the family’s perspective anymore. Staff come to me for family feedback at the conception of an idea, not when they’re about to launch a program.”

Amir says his son Kaylum has recovered and is playing soccer again and thriving. “I had a great support system of family and friends and I couldn’t have kept going without them.”

He hopes his experience finding a new career path encourages other families to find something positive in the challenges their children face. “I knew there was a bigger purpose. I wanted to do something that was bigger than me.”

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Connect2care puts your child's health record at your fingertips

By Louise Kinross

Becky Quinlan (top right) can’t say enough about the benefits of Connect2care—a new secure portal that gives parents and kids access to their health records at Holland Bloorview.

“My son Jack is pretty complex and seen in seven different departments,” Becky explains. “Now I can go online to see a list of all of his appointments and what’s pending, and it keeps me more organized.”

She also loves having Jack’s clinical reports at her fingertips. “Before I’d take a ton of notes at every appointment but now I can access that information in real time. I can also print out reports and take them with me to show other specialists.”

Holland Bloorview is one of the first children’s hospitals in North America to offer an online portal to families.

Becky is excited about new features that will be added to Connect2care soon. These include access to lab and microbiology results and two-way messaging with clinicians. “In the past when I had a simple question it might result in a couple of weeks of phone tag to get an answer. I’d phne and talk to the nurse, and the nurse has to talk to the doctor, but some of the specialists aren’t at the hospital everyday. With two-way messaging I’ll be able to type my question in and wait for a direct response.”

Becky is a family-centred care specialist at Holland Bloorview who’s helping to sign families up for the service. “I think it empowers us as patients and families to have our information at our fingertips.”

Connect2care was developed based on feedback from parents and clients and is part of a research study at the Bloorview Research Institute to see how it can be improved over time.

To get registered for Connect2care, visit Holland Bloorview Monday to Friday between 9 a.m. and 3 p.m. You’ll need to bring your child’s OHIP card and two pieces of identification. You can e-mail connect2care@hollandbloorview.ca with questions.

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Julia knows firsthand that every family is unique

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."
BLOOM: What does your experience as a parent of a child with disability add to your role here?
Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Can you tell us about your background?

Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.

Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.

BLOOM: Why do you believe that social media is important in your role?

Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength? 

Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.

Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.

For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.

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Get your kid active at Variety Village

By Louise Kinross

Check out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.

Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.

Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or a subsidized annual membership to families of children with disabilities.

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

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Want to know what kids think? Just ask

By Louise Kinross

Tommy (in orange shirt) and Martin Tobon (foreground) are nine-year-old twins.

Martin likes building Legos. Tommy prefers to swim. But he doesn’t like wearing goggles because “fish don’t wear goggles.”

The boys are just as specific about what they like and don’t like about Holland Bloorview, Canada’s largest children’s rehabilitation hospital.

“I don’t like the way they put the basketball hoop in the gym,” Tommy says. He speaks softly and with effort due to his cerebral palsy. “The hoop in the gym is too high.”

“That’s right,” Martin says. “He wants different sizes for different kids who can’t shoot that high.”

Tommy also found the water table in the Ronald McDonald Playroom didn’t work for him. Because he uses a wheelchair, he couldn’t get up close enough to play.

The boys shared their ideas as part of the hospital’s children’s advisory council and say they’re pleased with the changes they’ve seen.

For example, there’s a new water table in the playroom that’s accessible so Tommy can wheel under it and play at his height. “We also wanted a place to hear music by ourselves or play games or on the iPad” Martin says, and voila—there’s now a dedicated space for these activities called the teen corner.

The group of 20 child advisors, which includes patients and their siblings, is led by Daniel Scott, Holland Bloorview’s outpatient playroom coordinator.

“It’s so important for kids to know their voice matters,” Daniel says. “We want to give them opportunities to give feedback in ways that are meaningful to them and to the hospital. Children with disabilities will be systematically marginalized for the rest of their lives—so if engaging them in a council helps them become their own advocate that’s an incredible life skill down the road.”

When Daniel launched the children’s advisory three years ago he couldn’t find one targeted to young children. Most hospitals, like Holland Bloorview, had a youth advisory, but participants had to be 13 or older. “The age range we see in a pediatric hospital is broad and to leave children under the age of 13 out of the change process is such a missed opportunity,” he says. “These are children who have been in the system for a while, are here on a regular basis and know it well.”

Holland Bloorview’s children’s advisory council is open to kids aged three to 13, but some children choose to stay on longer.

The council meets on a project basis to consult with hospital and external programs looking for input from this age group.

Its first event was a brainstorm—over pizza—on how to improve the Ronald McDonald playroom, a supervised “play zone” for clients and their brothers and sisters. Some kids filled out a survey or shared ideas verbally. Others were observed playing to see what toys and activities they gravitated towards. Kids could also browse a catalogue of adapted toys and stick a post-it note on items they’d like to see in the playroom. "The toy catalogue captured data from kids who weren't as verbal or who are shy,” Daniel says. “We ended up making a lot of changes, from creating a teen corner, to bringing in materials that made the room more accessible—like a large ramp and stairs to our ball pit so kids get could in and out independently—and getting a wheelchair accessible art easel and sensory table. We also lowered the level of shelving and made it open and at eye level for kids.”

Another event involved having kids try the food served on our inpatient units. This seemed a great idea since kids can be picky eaters. “The food tasted great, but when it was first put in front of them, it wasn't presented in a kid-friendly way,” Daniel says. “For example, one of the children said that the meatballs looked like brains.”

Another client who's lived for many years on our complex-continuing-care unit suggested the food was too bland. As a result, seasonings are now available in the kitchens. "These kids have a lot of their lives dictated to them, so providing as much choice as possible is a great relief," Daniel said. As a way to build the relationship between food services staff and inpatient families, a new Kids In The Kitchen program invites kids to come make their own pizzas, cupcakes or cookies.

They’ve also been consulted on the accessibility of video games. Scientists in the Bloorview Research Institute want to know if therapeutic games they're developing are easy to use and fun, so Martin and Tommy and friends came out for a night of video-game playing (in the photo they're with scientist Elaine Biddiss, right, and their mom Andrea, left).

“Daniel is really good at making the sessions fun—with snacks and activities—and getting their ideas,” says Andrea Davila, Martin and Tommy's mom.

Last year the group was invited to a patient experience conference to describe its role to about 350 people. Tommy and Martin sat on stage with other advisory members and answered questions from the audience.

“This is teaching them skills they'd never learn at school at this age, like being able to talk in front of so many people,” Andrea says. “They're learning to be advocates for themselves, but also to see a bigger picture that benefits other children. I notice they have more confidence when they speak to regular people on the street. And I know they raise their voice a little bit more—especially Tommy because sometimes people can't hear him. That’s something we practise.”

To get involved in the children’s advisory, call Daniel at 416-425-6220, ext. 3438.

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A brother's story fuels autism researcher

By Louise Kinross

“I sit here and think ‘How did I get so lucky?’” says Susan Day Fragiadakis, a research assistant in Holland Bloorview’s Autism Research Centre.

Susan recruits and assesses children and youth and their families for a study that aims to link genetic changes with specific types of autism and other neurodevelopmental disorders like Down syndrome.

Susan is part of a Province of Ontario Neurodevelopmental Disorders (POND) Network study that follows over 300 children and young adults.

“The goal is to understand how genes and biology affect the brain and behaviour in autism and other neurodevevelopmental disorders,” Susan says. That includes attention deficit hyperactivity disorder, obsessive compulsive disorder and intellectual disability. Participants give a blood sample for genetic analysis; have a brain scan; do interviews and questionnaires; and choose whether they wish to participate in a medication trial.

Susan’s role includes conducting detailed parent interviews that track “everything you could imagine about a child’s history back to birth: sensory issues, anxiety, sleep, eating, medical history.”

Her passion for understanding autism stems from her own family’s experience with incorrect information when her brother Rick was diagnosed in the early 1960s (see Susan top right in photo, with her siblings). 

“My mother was told that Rick’s autism was the result of poor parenting,” Susan says. “The implication was that somehow she had damaged my brother and the only treatment offered was psychotherapy for her. When she pointed out that she had two typically developing kids in the waiting room, the response was ‘but they’re girls.’ The way my mother and father dealt with it was to be an open book—to share our story to move understanding along. My mother wanted to educate people to help the next generation of families.”

Susan’s work on the POND study feels like coming full circle from her family’s experience of being blamed for her brother's autism, she says. “I used to worry about the lack of quality research into autism and now I get to work in a lab led by a child neurologist, a psychologist and an engineer that’s doing quality research that’s going to advance our knowledge and potential interventions.”

Susan has fond memories of her childhood. “When we lived in a small town my sister and I would take Rick on adventures that we didn’t fully explain to my parents. My older sister was the boss and I was the little sister. Rick would go cliff-climbing with us or ride his bike with us out into the country or go to the race track with us.”

Rick never attended school. “In some towns we lived in he went to programs run in church basements by 'the Association for the Mentally Retarded.' But the rest of the time he was with my mother and he liked to help her with cooking and cleaning and doing the laundry.”

In his early teens Rick went to live in an institution. “I feel very guilty about it,” Susan says. “I’ve never talked to my sister about it but I’ve always felt that some of it was that my parents thought it would be the best thing for my sister and me. That’s what they were told. Rick got very sick when he first went. There was a long period of time where we were told that to help him adjust we weren’t allowed to see him. That was hard. I think I blocked out a lot of things I didn’t want to remember.”

As a teenager, Susan worked with other children with disabilities. “My mother volunteered me to babysit for free for a family that had a child with autism. I think I knew I had skills working with individuals with disabilities and their families.”

That led her to study psychology at university. Ironically, Susan did an eight-month clinical master’s placement at the same institution her brother had once lived in. “It was eye-opening,” Susan says. “There’s a reason they were closed. They’re not the ideal setting for most people.”

Rick was one of the first people transitioned back to the community. He now lives in a group home and visits Susan and other family members every two to three weeks. At 60, he loves horse-back riding, sawing wood and fancy restaurants.

After graduating Susan spent decades educating people about autism, most recently at the Geneva Centre for Autism. “What people remember most from my talks is the examples I’ve given of my brother. As a family, we always talk about how Rick has educated two generations of workers. When I did public speaking there was always someone in the audience who knew Rick. One time I was talking about strengths and how just because you can’t talk and didn’t go to school doesn’t mean you don’t have strengths, and a woman in the audience started crying. It turned out she’d done her master’s research on my brother and had interviewed my parents. Rick’s had a huge impact on a whole lot of people’s lives.”

In recruiting families into the POND study, Susan feels she’s enabling youth and families to continue educating professionals. “I was consenting a kid into our study and one of the questions is ‘Why do you want to be in this study?’ This boy said ‘I want to be in the study because I can talk and I can tell you things that those other kids at my school who can’t talk aren’t able to. I’m speaking for them.’”

Growing up, Susan’s family participated in lots of research studies but didn’t typically hear back on the outcome. “I’m proud of the fact that we have annual science days for our POND families and the principal investigators come and explain how they’re using the data. The families are giving us their time, their information, and opening up a lot of stuff for us. We have a responsibility to respect them.”’

Susan believes her experience as a sibling to a brother with autism and as a parent to her own children helps her draw out the information she needs from parents.

She’s excited that the study is leading to practical interventions. For example, scientist Azadeh Kushki is developing an anxiety meter “that gives youth a visual prompt to changes in their heart rate that signal they need to do a calming strategy. This helps because kids with autism have difficulty identifying their symptoms of anxiety. It’s truly a collaborative effort.”

Most kids enjoy participating in the POND study, Susan says. “They’re with people who appreciate them and see their uniqueness as an interesting thing, as opposed to something to be fixed. We meet some of the most amazing kids who daily teach me something new.”

The study is funded through the Ontario Brain Institute until 2018. “It’s such a robust, rich source of information,” Susan says. “I hope we’ll be able to follow some of these kids and their families longitudinally.”

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Former client helps youth gain independence

By Louise Kinross

Gabriella Carafa is a social worker in our LIFEspan program with a long history at Holland Bloorview. Since she was a preschooler she's been a client in our neuromuscular clinic. As a teen she volunteered on our youth advisory and as a mentor and more recently she worked at our university-based Independence Program as a youth facilitator, mentor and social worker. BLOOM talked to Gabriella about how she got interested in working in children’s rehab.

BLOOM: What are your memories of Holland Bloorview as a child?

Gabriella Carafa: I always enjoyed coming here because it was such a welcoming place, even though the clinics were long and we’d sometimes spend the entire day (or what felt like the entire day for a child!). I didn’t come here often—once a year for my clinic appointment. I also went to the dentist here and had my orthotics made here.

BLOOM: What was the greatest challenge for you growing up with a disability and using a wheelchair?

Gabriella Carafa: There weren’t any challenges until I became a teenager. Then I started to realize my life will look different from my friends, who don’t have disabilities. They’re going to backpack around Europe and if I need to do that I have to bring someone with me—like my mom or an attendant. At that point I didn’t know how to manage being away from home for more than one night. I needed to learn skills to live independently and that’s why I went to The Independence Program (TIP) at Holland Bloorview.

BLOOM: What was the most important thing you got out TIP?

Gabriella Carafa: I learned that independence doesn’t mean doing everything for yourself. It means making decisions for yourself. So I could have an attendant come and help me with my morning routine so that it didn’t take three hours, but only one hour.

A lot of youth feel they have to do everything themselves and that if they don’t do it themselves, it doesn’t count. Once you go to college or university or are working or volunteering, you’re not going to want to spend three hours getting ready in the morning. At TIP they said: ‘Yes, you can do this now, but when you have a job and kids and are married, what time are you planning on waking up?’

BLOOM: What other things did you learn there?

Gabriella Carafa: I realized how much stuff I didn’t know. I was 18 and I didn’t know how to make a grilled-cheese sandwich. At home I was like ‘Okay, I want grilled cheese’ and my mom would make it. At TIP they said ‘Okay, so how do you make grilled cheese?’ It was a lot of practical things. The bigger thing was realizing I could still reach all my goals. My life would look different, but everyone’s life looks different. No one has exactly the same life as anyone else. I’ve still managed to accomplish great things.

BLOOM: How did you decide to become a social worker?

Gabriella Carafa: I chose social work because I wanted to be able to work one-on-one with clients and families, but also to tackle larger macro policy issues through advocacy. I’ve always wanted to work with individuals with disabilities and working here was great because it’s my way of giving back to the organization. Not only am I a social worker, I’m someone with a disability and someone who got services here. I feel I have a different understanding.

BLOOM: How does your firsthand experience aid you?

Gabriella Carafa: In social work we have something called ‘use of self’ where the therapist can bring parts of themselves into the equation. So if you have a good therapeutic ‘use of self’ you know when to share things, when it will help build a stronger therapeutic relationship, and when not to, so you don’t make it about you. People tend to feel like they can ask me questions.

BLOOM: What do you do in the LIFEspan clinic?

Gabriella Carafa: I see clients and their parents, often together. They’re coping emotionally with the transition to adult services. Most of the families feel like Holland Bloorview is their home and a lot of services are centralized here, or at SickKids, as opposed to in the adult system where services are scattered at different hospitals. Some of my work involves equipping clients and families with advocacy skills to navigate the adult system.

A lot of it is about funding, about connecting with the Ontario Disability Support Program or Developmental Services Ontario. They want to know what’s possible with housing options, relationships, sexuality.

I strongly encourage clients to go to our life-skills programs because I find youth often don’t know what they don’t know. Our life-skills programs can help them see what their strengths are and what they need support with as well as what their life may look like in the future.

BLOOM: Who do you work with?

Gabriella Carafa: I work with a youth facilitator, a life-skills facilitator and a nurse practitioner. We all work together as a team.

BLOOM: What’s the most challenging part of your job?

Gabriella Carafa: That I can’t change everything and increase the resources out there. In general I find that services are lacking and I wish there was more I could say or do. It’s hard when families say: ‘It’s not enough, what are we going to do?’ They’ll say ‘How does anyone live on the money you get from the Ontario Disability Support Program?’

I find families and clients want to be heard, they want to feel listened to. I focus on client and family strengths. Families are incredibly resilient. It’s not about empowering families—they already have it inside them. They just have to figure out how to use the skills they already have. They’re already powerful.

BLOOM: What do you like best about your job?

Gabriella Carafa: Being able to see a client and family at their first appointment and then over the next three years watch them become more comfortable with transitioning and building their skills. Sometimes clients will start coming in with their parents and then later they come in alone and if they’re able to do that, that’s what we want. In adult services they need to be able to manage appointments and problem-solve. I’m part of that journey with them.

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'There is something magical about this place'

By Louise Kinross

Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school co-op student in our integrated kindergarten (working with his old teacher Paul Alcamo); and he now works part-time as a recreation assistant with our inpatients. One of our family leaders suggested we interview him.

BLOOM: Why did your parents choose our kindergarten for you?

Stephen Dustan: I think what attracted them most was the fact that I would have therapy and be in a place that was equipped to handle my needs. They loved the idea of it being integrated with community kids because that gave you such important skills of being able to articulate your disability to able-bodied kids, which is something you’re going to do lifelong as a person with a disability.

BLOOM: What do you remember about our school?

Stephen Dustan: I remember having my disability explained in a way that I understood and in a way that I could explain it to other kids. My 'go-to' is that my brain got cut-off from oxygen at birth, damaging the way my muscles communicate to my brain. So my muscles are tighter and don’t grow properly like normal kids’ muscles do.

BLOOM: Did that explanation satisfy most kids?

Stephen Dustan: They often gave me a blank stare. It kind of went over their head but it kind of sunk in. I found my willingness to explain it beneficial. Kids are just curious, they’re not mean by nature, and if you provide them with an answer, they usually were pretty receptive and understanding.

BLOOM: What was it like to move to your local school for Grade 2?

Stephen Dustan: The moments when I would feel different from the class were when everyone was getting ready for recess, especially in winter, and it would take me longer, so I’d have less time outside to play. Getting an educational assistant in place for me was difficult and took some time. But I was good at self-advocacy and stating my needs. So I asked whether I could get ready five minutes earlier than the class. My disability was never an issue for me socially. I have an older sister and I had the support of her and her friends so the kids in my class gave me respect. I always had friends to confide in and rally around me. It wasn’t until Grade 8 that I experienced some bullying.

BLOOM: What happened in Grade 8?

Stephen Dustan: I did my last year of elementary school in a new school that opened in my neighbourhood, so I was starting again without friends. I fell into a group of friends that were kind of mean to each other and very political. I did experience some bullying and I definitely can relate to the isolation that that causes: the feeling of not wanting to go to school; hearing whispering and thinking it’s always about you. I told my friends and parents but I never got the authorities involved. I waited it out until high school and it got a whole ton better then. I remember on the first day of high school I was really nervous and I came through the doors on my scooter and there were three of my old friends from elementary school and instantly I knew that it was going to be fun.

BLOOM: What is your university program like?

Stephen Dustan: I found this York/Seneca rehab program where you get your BA in psychology, which I now have, and then a certificate in rehab services. It’s a general program that covers all aspects of rehab. What I like most is that I had the opportunity for field placement.

BLOOM: What did you do as a placement?

Stephen Dustan: Two years ago I worked with The Centre for Dreams, which is a day program for adults with developmental disabilities in Markham. I worked with clients on social goals, life skills, self-care and vocational skills. I had never worked with clients with developmental disability and it was a really great experience. I got a new appreciation for how honest people with developmental disability can be, how kind they can be, how open hearted they can be. It was a privilege to work with the clients and the staff.

BLOOM: What are you doing in your placement here?

Stephen Dustan: I’m in therapeutic recreation and life skills working in the community with Sarah Keenan. I’m learning about the life skills process, the different ranges of goals that clients set and how to achieve these goals. It’s very solution-focused.

BLOOM: Have you found anything about the work surprising?

Stephen Dustan: I knew I would like it, but the amount I like it surprised me. Life-skills coaching is definitely something I could see myself doing and having this experience with Sarah helps me in my job as a casual staff on the inpatient unit being a recreation assistant. I can apply what I’m learning to both situations.

BLOOM: What is your favourite part of the work placement?

Stephen Dustan: I love the element of counselling and coaching and being a part of someone’s development. My future goal is to pursue a master’s in social work and get into counselling.

BLOOM: Does it seem unusual to you that you spent so much time here growing up and now work here?

Stephen Dustan: Holland Bloorview was such an integrated part of my life. I never had any negative feelings around this place. For example, I didn’t connect it to the more traumatic elements of my recovery after my surgeries when I was an inpatient here. It was physically painful to do rehab, but it wasn’t emotionally painful or painful in a way that would make me not want to come back.

BLOOM: How would you describe Holland Bloorview?

Stephen Dustan: It’s incredibly unique and alive. For me it’s been a place of recovery and opportunity and it still is. There is something magical about this place, especially the Spiral Garden program. I went there when I was little and I later volunteered there. They’re phenomenal at putting this element of imagination, of magic, into a place that traditionally shouldn’t have any. From my time working at Spiral Garden and on the inpatient unit in general I’ve come to see the amount of work and organization that go into creating that recreation hour with the clients gardening. How many people pour their heart into what they’re doing, the amount of organization and heart and energy it takes.

BLOOM: Has your view on disability changed over the years?

Stephen Dustan: When I was a kid I always had this idea that you’re not disabled, you can do anything a normal kid can do it will just be a bit more challenging or you’ll do it differently. That helped me tremendously as a kid, but now as an adult I can recognize that it’s not a matter of me not being disabled. Disability can be an identity, a social identity. So much of my strength has come from 'being disabled' that I no longer see it as a weakness or something you have to distance yourself from or deny. It’s something you can accept and in some ways celebrate.

BLOOM: What are some strengths that have come from your disability?

Stephen Dustan: I think there’s a depth, an internal space that I have to hold things, to connect with people, to understand people’s struggles and emotions. Because I’ve been placed in intense situations that most people don’t experience, I’ve got insight into where strength and hope come from when it’s really dark. I know that that light is inside everyone and you have to find it and if you can relate to it in an authentic and real way, you can make that light brighter in yourself and in someone else.

BLOOM: So disability isn't something you need to 'overcome?'

Stephen Dustan: No. I’ve done a few disability studies courses that opened my eyes to the idea that disability is really a matter of social barrier and not a matter of something being biologically wrong with a person. It’s not about overcoming tragedy. It’s more about transforming tragedy into triumph, but not in the sense that you move past it or get over it. You accept the disability with such wholeheartedness that it no longer is something that impedes you on your path.

BLOOM: What was it like to come back as a placement student in the integrated kindergarten you had gone to as a young child?

Stephen Dustan: So many memories that were foggy came flooding back. Paul is exactly the same in every way I remember him. He still gets the most stoked about dinosaurs of anyone I know. I remember as a student I knew every dinosaur’s name and now I can see why I was so passionate about that topic—because Paul was.

BLOOM: What impact do you think you had on the kindergarten students when you came back?

Stephen Dustan: I hope they can see themselves in me and we have that connection. It’s the idea of 'Hey, I made it, I’m doing well and you can too.' I hope they take from my example that they too can be a part of this world in a real and authentic and powerful way. I try to remind myself that I’m a role model and to hold myself accountable to that.

Here's a photo of Stephen as a co-op student in the integrated kindergarten. By Paul Alcamo.

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