'I open up a world for kids to be able to participate in'

By Louise Kinross

I have a strong image of Laurel Robinson (standing above), a speech-language pathologist at Holland Bloorview. Laurel is always racing up the path to the hospital, or back down to the parking lot, pulling a cart on wheels behind her. The cart is packed with alphabet boards, picture displays, photos and technology she uses to create a way for children who don’t speak to communicate. Laurel, who is usually on the road driving to client's homes or schools, is always warm and bubbly. What I didn’t know about her is that she was born in Montreal, grew up in Saskatchewan, and studied in Alberta. She's also a sign-language interpreter and was a competitive synchronized skater growing up. We talked about her work at Holland Bloorview.

BLOOM: How did you get into this field?

Laurel Robinson: I started in pre-medicine. I knew I wanted to work with children. Then I watched a Monday night movie with my mom about a child who was non-verbal and used facilitated communication. It was a child who had been abused, and was in court. I didn’t know what alternative and augmentative communication (AAC) was, but I knew I wanted to do it. I did an honours in linguistics, and a major in psychology, to get into the speech and language pathology program in Alberta.

Before I began university I used to skate, but then I had surgery on my knee, so I had to stop. I decided to take some sign language courses instead, and I met the Deaf instructor, who worked at the University of Regina. I wanted to learn more, and we began meeting for lunch. I got immersed in the culture, because she introduced me to Regina’s Deaf community. While I was waiting to get into my master’s program to be a speech and language pathologist, I did the two-year American Sign Language program. The friends I’ve made through the Deaf community are my long-time friends.

BLOOM: My son primarily uses sign to communicate. It was our developmental pediatrician at Holland Bloorview who first suggested it. It’s always bothered me that sign-language instructors aren't part of the children's rehab model.

Laurel Robinson: It’s the medical model we all live in. Several years ago, I inquired here about whether we could bring on a teacher of American Sign Language, when the daycare at the Bob Rumball Centre for the Deaf was closing. I felt it was a piece that was lacking for our clients, especially in the school here. I wanted to connect and make courses for adults and parents who had children with disabilities who signed.

One of the biggest myths in our own profession is that technology is the answer.

BLOOM: Yes! Our culture worships technology.

Laurel Robinson: It’s not always the most efficient way for someone to communicate. For some kids, it’s a lot of work and effort. My role is to support communication, it isn't to give a device. It might include making a communication book, or assisting the family so they can learn more sign language. Some kids who are visual learners are like a sponge to sign language.

BLOOM: What is a typical day like?

Laurel Robinson: They’re definitely not the same. Our program goes out into the community. We consult and collaborate in the classroom with school teams, and we go into families’ homes to work with family and support staff. I’m on the road a lot. Communication happens everywhere, and our hope is to create a communication system the child can take anywhere and everywhere, to communicate with everyone.

Everyone is unique, and it’s not diagnosis-specific. We look at a child’s goals—what they need to communicate about, and participate in—and their physical abilities. The system comes second. The system needs to fit the child’s needs.

For some kids who have difficulty accessing technology, communication books and displays make sense. Sometimes we train communication partners in how to ask questions in a specific way, and to look for specific signals in a response from the child—such as a vocalization, smile or eye movement.

Some devices have face-to-face vocabulary and an integrated computer system so the child can access the Internet and social media. The iPad is an example. The iPad is great, because it’s cheap and all the kids use it, so it’s socially acceptable. But it doesn’t work for most of our complex kids. Not everyone can touch a screen with their fingertip.

BLOOM: What are the joys of your job?

Laurel Robinson: I don’t consider it a job. It’s something I’ve always wanted to do, and which I’m extremely passionate about. It’s very rewarding to see a child communicate for the first time.

I’ll never forget the first young girl I prescribed a device for. She was non-verbal. I was training her parents on how to use the device, and she was pushing buttons on it randomly, to figure things out. Then she looked at me and put her hand up. “Do you have something to say?” I asked. She nodded her head and pushed the button with the heart on it, which said ‘I love you.’ Then she gestured to her mom and her dad. Those were her first words to her parents.

I open up a world for kids to be able to participate in actively.

BLOOM: What are the challenges?

Laurel Robinson: I think the funding and resources are always a challenge.

Sometimes the challenge is someone who has very low expectations for a child. When I’m designing something, I say more is better than less. The more they have access to, the more the child can show us what they’re capable of.

I go into great classrooms all the time. But I also go into classrooms where the expectations are extremely low. That doesn’t fly with me. I can’t change that, but I can work in the home environment. I’m someone who can’t say no, because I care. Every child has the ability to communicate, and every child is communicating, and has the ability to do more. A child not learning isn’t the child’s fault. It’s our fault for not teaching them properly, and not having the right tools in place.

BLOOM: What kind of emotions come with the job?

Laurel Robinson: It can be very demanding, very stressful. We have heavy caseloads. The solutions sometimes don’t just appear. There can be a lot of trial and error, and many of the kids we work with are very complex. Every child, to a certain degree, is unique.

BLOOM: So you’re kind of starting from scratch every time?

Laurel Robinson: Yes. There isn’t a one-size-fits-all AAC system. It takes a very long time to do a complete assessment, and to find something that can work best for a child.

We work as a team here with occupational therapists, assistive technology consultants and communicative disorders assistants. It’s very interdisciplinary, and takes a full team approach to ensure a system is suitable. Our external partners include teachers, educational assistants and school board therapists. We might have 15 people around a table discussing what our goals for a child will be.

BLOOM: Is there anything you do to manage stress?

Laurel Robinson: I like to travel, and a couple of years ago I went back to skating. I had competed nationally at synchronized skating when I was younger.

BLOOM: What exactly is synchronized skating?

Laurel Robinson: It’s like synchronized swimming on ice. I love the team aspect of it, and it allows me to clear everything from my mind. I also do spin classes on Mondays and I love theatre.

BLOOM: If you could change one thing about how we approach AAC, what would it be?

Laurel Robinson: I think it’s understanding that technology is not the answer. That’s my biggest thing. Everybody feels technology is the answer, and unless technology is in place, a child can’t be a full participant. That’s a myth.

I’d also like to see mental health initiatives become a part of what we do, so we give children access to that kind of vocabulary and information.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Laurel Robinson: Today, everything comes down to funding. We’re trying to change our service delivery model, to accommodate people on wait lists. But there’s a lot of behind-the-scenes work that goes on in creating communication materials. It takes a lot of time and thought and organization. It doesn’t easily fit into a numbers model.

When I started here, I felt I was able to do a better job, because I had more time to devote to each client. Now it’s ‘go, go, go,’ with an influx of referrals. It makes you have to work in a different way. As a human, and a health-care professional, it’s hard to not try to go above and beyond. That means doing things outside my 9 to 5 work. I still do those extras, because I care.

BLOOM: You and Elizabeth Baird did a No Boundaries project last year. Can you tell us about it?

Laurel Robinson: Working in Toronto, we’re in a very multicultural environment, and lots of our families have a second language in the home. But there are no multi-language communication materials. We decided to create theme displays and communication books in two languages—in English and in the language spoken by families.

We identified the five most commonly used languages by families at Holland Bloorview, and added French. So for grandparents or parents who don’t have a strong English connection, they have an opportunity to interact with the display in their own language.

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'Our nursery programs are a model for social change'

By Louise Kinross

It’s a simple ritual, but one of Silvia Souto’s greatest joys. “Opening the door of the classroom at Play and Learn, and seeing the faces of the children—so happy and eager to come and play in our program—that is pure joy,” she says.

Silvia is an early childhood educator in one of Holland Bloorview's two nursery schools, which are located in the community. Play and Learn includes children with and without disabilities. Silvia first worked as a volunteer at our old hospital site in 1999, after moving to Canada from Argentina, where she was born.

In April, Silvia and Play and Learn co-worker Isabel Zatti made a trip to Macao, China, where they shared Holland Bloorview’s vision of inclusion with early learning educators from 80 countries. “Isabel and I felt the voice of inclusive programming was not heard at other conferences we'd attended. We wanted to do something about it,” Silvia says.

BLOOM: How did you get into this field?

Silvia Souto: After studying psychology and education at university, I worked in special education services in Argentina with children from infants to age five. When my husband and I came to Canada, and were trying to improve our English, my ESL teacher encouraged me to look into Bloorview. You will talk to people who have similar interests, she said, and it will help your vocabulary. I came for a visit and was accepted as a volunteer in the child life program doing bedside play.

I vividly remember the nursing station. Cara Sudoma was one of the nurses there, and she would come in and out, full of energy. Later I did an internship in the child life department, was hired at Play and Learn’s summer camp, and accepted a part-time and then full-time job. I did my equivalency and got my credentials as an early childhood educator.

BLOOM: What is a typical day like now at Play and Learn?

Silvia Souto: The day is 'go, go, go,' with no pause button. The program starts at 9, so we're there at 8:30. It’s a high-quality program, which means we need to carefully plan and prepare. We do a lot of hands-on, sensory activities and art. We want the children to express themselves and explore freely. If we see something they’re interested in, we’ll include that into the preparation for the following day. We follow the children's lead.

We take early literacy and play very seriously, so we do a guided learning circle every morning and use stories to reflect on what the children are doing in their play, and their interests. When we tell the stories, we use props to catch the children's attention. Our guided learning circle is an opportunity to learn new words, make connections between stories and play. It's an invitation to join in with peers and share the joy that comes with listening to a story. 

A typical day happens inside and outside the classroom. In addition to providing children with a rich and meaningful learning environment, we discuss and document their progress, brainstorm strategies to support their participation and learning, talk to their families, and meet with our team of therapists.

BLOOM: How many children are in a group?

Silvia Souto: I work with 10 toddlers and one other teacher. We have one group in the morning and one in the afternoon. We also have volunteers and sometimes co-op students in the classroom. We have a team of therapists who support us in the classroom. They develop a plan of intervention and we find ways we can include it within the child’s play, so it doesn’t look like therapy.

BLOOM: What’s the greatest challenge?

Silvia Souto: Compared with the challenges our families are facing, I don’t feel I have a right to say it’s challenging. I enjoy it very much. In order to support children and families I do have to take care of myself, because I need to be present constantly in my interactions. It’s a demanding job physically, and you have to be emotionally fit. Sometimes I have to remind myself about what you're told on the plane—to put the oxygen mask on yourself first.

BLOOM: Is there anything specific you do to manage stress?

Silvia Souto: We have a very tight and absolutely supportive team that I can always go to, if I need to. I know I can always count on them for guidance, or support, or for taking a break. When you trust your team in that environment, it’s easier to manage stress.

Personally, I like skating in the winter. I keep my skates in the car and sometimes I’ll stop at the local rink and do a couple of laps. The other thing I do to take myself completely out of my worries is jigsaw puzzles. If I need to concentrate on something, I’m going to open a puzzle box. There’s something I love about going from complete chaos to finding the perfect fit.

BLOOM: What’s the greatest joy of your work at Play and Learn?

Silvia Souto: The trust the parents put in us gives me an immense amount of happiness. For some of the families, our nursery school is where they leave their child for the first time. The other element is witnessing how inclusion works—seeing the interactions of the children, and thinking we are planting the seed for a more just society.

BLOOM: What qualities do you need to be successful in your role?

Silvia Souto: Energy, definitely. It’s a physical kind of job. You need to be someone who can connect, who can be trusted to develop meaningful relationships with the children and their families. You need to have a solid knowledge of child development. You have to understand children in the context of their families. You need to have a playful soul, to think as a child, and to be creative.

BLOOM: How do you get your energy?

Silvia Souto: At the end of the day, I like to say I’m enthusiastically exhausted.

BLOOM: Recently you and Isabel Zatti, Play and Learn’s site facilitator, went to speak at a conference in Macao, China. Can you explain?

Silvia Souto: Isabel and I went to the World Forum on Early Care and Education, which is a global exchange of ideas on how to develop high quality programs in early childhood. This year there were almost 800 people from 80 countries.

Isabel and I felt the voice of inclusive programming was not heard at other conferences we’d attended. We wanted to do something about it. This was the perfect venue, because with so many people, our voices could be amplified.

BLOOM: What was your workshop about?

Silvia Souto: We presented on a panel on inclusion, from infancy to adulthood. We presented with educators from South Africa and India and Hong Kong. We talked about how Holland Bloorview is a hospital, and within the hospital we have early learning programs like the nursery schools. We took some of the messages from our Dear Everybody campaign, and showed how we embed these messages into the work we do. For example, ‘If we can’t include everyone in a game, we’re not playing it right.’ We gave examples of how we adapt activities and toys to make sure all children can participate.

BLOOM: How did people respond?

Silvia Souto: They were fascinated that a hospital had a community nursery program within it, and that early childhood educators could work in a hospital. They hadn’t seen that before.

We made connections with a lot of people. We feel our nursery programs are a model for social change, and we have to invest in those formative years to build a more inclusive society. We wanted to spread the idea that if we support children in developing an acceptance that we’re all diverse, and do it at an early age, it’s much easier than trying to change behaviour later on. The interactions that happen in our programs are so natural.

BLOOM: If there was one thing you could change in children’s rehab, what would it be?

Silvia Souto: I think inclusive community programs like the ones we have are key. Play and Learn is unique in that we have a lot of support. We have access to training, to other professionals, and we work as a team. But that doesn’t happen in schools, or even in other childcare centres that are working towards inclusion. They may have resource consultants, but I'd like to see a much higher level of support in daycares and schools.

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'Kindness matters...that is what good care is'

By Louise Kinross

Karen Ward has worked with children with disabilities for over 30 years. I met her 22 years ago, when my son attended a Scarborough nursery school run by Easter Seals (the program is now run by Holland Bloorview). Karen explained how the integrated, play-based program worked. She was so warm and kind and upbeat. Karen hasn’t changed a bit, but she now manages many clinical programs at Holland Bloorview, with a focus on work in the community. We talked about the joys and challenges.

BLOOM: How did you get into this field?

Karen Ward: I took a bachelor of applied science in child psychology at Guelph University. Do you remember Robert Munsch?

BLOOM: The children’s book author/illustrator?

Karen Ward: Yes. He was one of my professors. He was fabulous in how he engaged students to engage young children. He was someone who made me understand the importance of early learning and that I wanted to be a part of it. My first role after school was running a daycare program for children with special needs at Variety Village. It was run by Easter Seals, but located at Variety Village.

BLOOM: And later the nursery schools in the community that were run by Easter Seals became Holland Bloorview programs.

Karen Ward: Yes, in 2003 Joan Ferguson and Sheila Jarvis could see that the children we served in the Easter Seals programs were followed here, and there would be better alignment to have the programs run by Holland Bloorview.

The nursery schools were aligned with participation and inclusion, because they were community programs. I’ve always been interested in community-based education. Whether we have early childhood educators doing play-based intervention with families in their homes, or specialized teams who go into Toronto day cares to provide therapy or help adapt a program, or therapists who support clients who use communication and writing aids at home and in schools.

BLOOM: Why were you interested in children?

Karen Ward: I came from a really large family where there was a lot of family involvement. I think I saw the amazing potential in young kids. I saw they were this wonderful canvas for what could be, and I wanted to be a part of that.

I remember going for my first job interviews and they were to work with typically developing kids. I thought that might be interesting. But then this opportunity at Variety Village came up and I thought it would mean a huge amount of learning for me. I was fascinated by it.

BLOOM: Was that your first exposure to disability?

Karen Ward: No. When I was in my teen years I was a swimming instructor and a lifeguard and I had taught children with disabilities before.

BLOOM: What is a typical day like here?

Karen Ward: You’ve got to be kidding! I’m constantly changing hats. I may get calls from any one of the programs to help them troubleshoot, when we need to make adaptations.

I have amazing teams that run exceptional programs, and I’m honoured to work with them. A typical day is always trying to improve the quality of what we’re doing. One of the big things we’re doing right now is building community capacity.

A lot of my role is making sure I understand politically where we’re going, and who are the internal and external partners we need to be constantly dealing with to push that forward. Now we’ve become part of ambulatory services, we’ve really broadened our scope.

I think early learning, especially, is being recognized as an important enhancement to a lot of programs. For example, when a child under age five comes into our spina bifida clinic, they will see an infant development worker who will help link the parents to supports in the community.

Or if we have a young inpatient here about to be discharged, we will give them information about local services, whether that’s in Toronto or Thunder Bay. People are asking our staff to share their expertise, whether it’s in creating play-based therapies for kids with autism, or making sure literacy and communication are embedded in school curriculums for our clients.

BLOOM: What is the greatest challenge of your job?

Karen Ward: Making sure that we clearly hear what our clients and families need. They drive our programs of excellence. They make us think differently. They’re at the core of everything we do.

BLOOM: What’s an example?

Karen Ward: Well, we’ve looked at revisions to the referral criteria for communication and writing aids. Based on the organization's No Boundaries strategic plan and client and community feedback, we worked diligently to streamline the process. We made it more user-friendly, understandable and easier to access. We talked to families, reflected on best practices and what other agencies are doing, and adapted the criteria.

BLOOM: What's the greatest joy?

Karen Ward: Talking to the parents. No question. Staying connected with the parents over time. I’m known so many clients since they were two or three years old. They’re the ones who have made me change. I’m fascinated by clients and families, and I listen to them.

Then there are the frontline clinicians. I’m in awe of what they do and so respectful of it. I don’t want to be their leader, I want to be their partner. I’m so pleased when we, as a team, make a quality improvement and everybody sees the benefit of it. I’m a real hands-on leader.

BLOOM: What other qualities do you need to be good in your job?

Karen Ward: You need a tremendous level of awareness and of kindness. You need to figure out how to manage people. You may need to make decisions that don’t always have the full support of everyone. However, you acknowledge that concern, and ask that we all just give it a try. We need to keep trying, and to have a vision of what can be better, even though we might stumble along the way. I’m always telling staff that if something doesn’t work, we will work to make it right.

BLOOM: What emotions come with the job?

Karen Ward: Tremendous joy, because I absolutely want to be working here. I do have concern about the future of some of our services for our families, based on municipal and provincial politics. I do worry about how some of our families will access some programs. I do get frustrated that we can’t do more, or there isn’t enough time in the day. I’m often concerned about the wellbeing of the staff. They give 150 per cent, and I’m always trying to keep their health and wellbeing in check. I care very much for them.

I love the busyness of my work. I love that it’s never the same day.

BLOOM: Is there anything you do to manage stress?

Karen Ward: I really love walking. I walk on the boardwalk at the beach. And I have a couple of really good friends, and sisters, that I make sure that I see and spend time with.

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

Karen Ward: I think we need to broaden what we do. We’re trying really hard to expand our hours and the diversity of groups that we offer. Our families have such a hard time when our hours are rigid. 

The other thing I think is key to success, and which we haven’t done as well as we could, is to infiltrate the community. We need so much more of our rehab services in core community groups—in camps, sports programs, library programs. We need so much more of us 'out there,' instead of 'in here.' We need to broaden our arms. If we keep rehab within four walls, it will never be as inclusive as we need it to be.

BLOOM: If you could give yourself advice on your first day, from where you sit now, what would it be?

Karen Ward: Kindness matters so much. I think we need to remember to be kind to everyone—families, staff, each other. That is what good care is.

Because my background is in education, people used to say I’m not a clinician, so how can I manage clinicians? You don’t have to be clinical, you have to have solid core values. Kindness and honesty are two values that are very important to me. I’m very good at acknowledging I don’t know everything. When I need to know about speech, I go to an SLP. If I need to know about occupational therapy, I go to an OT. As a leader, you need to be able to pull from different people to figure things out. Together, we can build remarkable teams and programs for everyone.

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In nursing 'everything good comes from the heart'

By Louise Kinross

Shevonne Thatham is a registered practical nurse at Holland Bloorview working with children who have complex disabilities and use ventilators to breathe. She just won the DAISY award, which recognizes a nurse that uses a strengths-based approach and combines top-notch clinical skills with deep connections with children and families. “Families like my realness,” Shevonne says. “A lot of people say I’m the Oprah on the unit, because people open up to me. I’m able to make them feel welcome and warm.” 

BLOOM: How did you get into this field?

Shevonne Thatham: I never had a thought about working in pediatrics until I did my consolidating year on a student placement here. I knew I wanted to be on a respiratory unit, and I landed here, and the kids just captured my heart. Often there weren’t parents at the bedside, and there was a sense of urgency, that these children needed care, love and compassion. This is my calling.

BLOOM: How did you choose nursing?

Shevonne Thatham: I was inspired by my mom. My mom is a practical nurse working in geriatrics. I used to go with my dad to pick her up on evenings, and we would go a little early so she could introduce me to her clients. I was always that caring person that wanted to help out. I was a little kid listening to their stories about how they got there. That sparked a flame inside me that never faded.

BLOOM: What’s a typical day—or night—like for you?

Shevonne Thatham: I do rotating shifts. I like nights because you’re the nurse, the respiratory therapist and the doctor—you do it all. The clients I work with require total care. In the morning, we prepare their meds, administer their feeds, and get them up in their chairs. They may wear devices like ankle-foot orthoses. I’m their hands, their feet, their eyes, their ears. Then, I’m with a child for the day, whether they go to therapies, school or off-site. They’re complex, so I support any medical needs they have. I’m their medical parent. For children who have a tracheotomy, they may need a suction to maintain their airway. I ensure their [feeding] tubes are running. 

BLOOM: What is it like working with this population?

Shevonne Thatham: It’s about empowering the families and giving them that hope and courage that their child will make it home. Some of these kids were diagnosed at birth, so it was life changing for their parents. It’s giving them that hope that everything is okay, despite their differences. You can still have a life and a family.

BLOOM: You must develop very deep connections with these kids.

Shevonne Thatham: Yes. They can’t communicate with me, because many of them are non-verbal. But I know exactly what’s going on with them. Non-verbal communication is key, and learning to read them—whether it’s an elevated heart rate or a grimace in their face.

BLOOM: What’s most challenging about this work?

Shevonne Thatham: Advocating for someone who is non-verbal. Every child is different. We’re at the bedside and we’re the first level of contact with these kids. Sometimes it’s hard for physicians, who are more focused on the medical, to understand something may be about comfort. When I advocate, it’s not what I want, it’s what the client needs.

Another challenge is that when the family comes to Holland Bloorview, the parents are in that grieving stage. They’re dealing with a lot of anger and emotions. With families, sometimes I need to be a social worker, which is not my field. I need to think about how I say what I need to say in the appropriate way, that is caring and compassionate as well. Sometimes it’s sitting with parents and if they’re crying, I’m crying.

BLOOM: What are the joys?

Shevonne Thatham: There’s so much. Doing what I love to do. Seeing a smile on a child’s face or parents saying thank you. Knowing that I’ve made a difference or that I’m helping to better their chances of going home quickly. Advocating. Teaching families and teaching clients who are able to do their own self-care. Aiding in their everyday life.

BLOOM: What emotions come with the job?

Shevonne Thatham: Frustration. It’s hard to understand, sometimes, what is going on with a client. Happiness. Moments of happiness. Moments of anger, because why? You just think ‘Why is this happening to these families?’ Being able to be a person in their lives, so when the family comes back here later for respite, the child remembers you, and you know you left an imprint in their life.

BLOOM: How do you manage those emotions?

Shevonne Thatham: I’m a spiritual person, so I would pray for my families and for myself. I bring everything to God. I also use music, driving home, to debrief.

BLOOM: What have you learned from families?

Shevonne Thatham: They’re taking on a new job that they’ve not signed up for, or gone to school for. And in the end, they’re able to be the parent, the nurse and the doctor for their own child. Families have taught me that they’re strong people.

BLOOM: If you had to give yourself advice on your first day, from where you sit now, what would you say?

Shevonne Thatham: Put your heart into it. Everything good comes from the heart. If this is where you want to be, show it, and it will manifest a beautiful outcome.

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

Shevonne Thatham: I think we’re going in the right direction, and since I got here there are more opportunities for kids who have a trache to do normal daily activities. I’d like it if we had a really shallow end in our pool, because despite having a trache, a lot of our kids want to be in the pool. It would be great if we had some sort of protection for the trache, so that they could go in the water. 

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For many, Joanna is the face and voice of Holland Bloorview

By Louise Kinross

Joanna Miedzik is an institution at Holland Bloorview. She’s the bright smile that greets you at reception, and the kind voice when you call in with a problem. Joanna has an encyclopedic knowledge of the hospital, its staff and programs. She grew up here as a child receiving services in our spina bifida clinic. Today, parents regularly turn to her for advice on raising their child with a disability. Joanna has worked at Holland Bloorview for 20 years. As a receptionist, she’s our point person for families, staff and visitors who need information or help.

BLOOM: How did you get into this field?

Joanna Miedzik: I’ve been here all my life. I came to Bloorview when I was nine. My family originally lived in Poland, and then we travelled in Syria for a couple of years and lived in Damascus. Then we moved to Buffalo, where I had a lot of my surgeries at the Shriner’s Hospital. Some friends of my parents told them about the medical treatment I could get here at Bloorview, so my family moved here.

My parents gave up living in their own country in order to give me the opportunity to live in Canada, where there are more opportunities for me to be who I am today.

Bloorview has always been home for me. By working here I felt I could give back to everyone what they gave to me. I’ve had help from almost every department here, and every single person that was with me growing up has had an unbelievable impact on me and who I’ve become.

I always wanted to work with children and be a helper. At one point I wanted to be a social worker, but that didn’t work out for me. There was no question when I was looking for work that this was the only place for me.

BLOOM: What is a typical day on reception like?

Joanna Miedzik: Very unpredictable! I open up shop in the morning and get reception prepared for the day. We have daily tasks we need to complete. The mornings are pretty hectic. We often have lots of students come in, and they need help in getting themselves settled for their parking.

Then the calls start coming in. There’s a lot of action—people-wise and phone-wise. It’s a big juggling act most of the time.

There’s a lot of multi-tasking, and being a detective to put information together to assist people. We have a lot of enquiries about Holland Bloorview. I have to be on top of it, and figure out who is the best person to help with a particular question. I need to focus on the roles that everyone plays at Holland Bloorview, and how I can redirect people.

BLOOM: Being a former client must be a huge advantage.

Joanna Miedzik: Yes. To come into this role without that background would be extremely overwhelming. I’ve spent half of my life here. I’m 42 and I started when I was nine. Certain pieces of knowledge come naturally to me, because it was part of my everyday growing up. Sometimes I don’t even realize what I know. When I don’t have an answer, I call around and ask questions of my colleagues to put together the information.

BLOOM: What are the joys of the job?

Joanna Miedzik: To see everybody with a smile on their face in the morning. To see the children go by on their bicycles on their exercise routine. I love to have conversations with the parents. A lot of parents come to me to chat and vent, and have a human body to listen to them when they’re overwhelmed.

I feel that is very special. I’m able to be on their level and have a conversation that’s not artificial or scripted. I’m giving them my heart and my soul. When I see the pain and the tears I can actually say ‘I’ve been there and I’ve cried, too, and I’ve had my frustrations.’ And we share our stories. I always try to turn their negatives into a positive. I always tell them that that they’re in good hands, and everything that’s possible will be done for their child here.

It’s nice to know I can have true heart conversations with these families. I’ve almost fulfilled my dream of wanting to be a social worker—not on paper, but I get to sit on reception and be that helping hand in a different way.

BLOOM: What are the greatest challenges?

Joanna Miedzik: I’m the first person that people see, and sometimes I get the brunt of their frustration. Negative energy can surround me, and I have to remember to ground myself and not let it overwhelm me.

BLOOM: I guess whenever anyone—staff, family or visitor—has a problem, they call you!

Joanna Miedzik: There are so many people who are hurt and frazzled and angry and sad, and sometimes it gets dumped on me. I have to back up and say ‘this is not about me.’ I can’t take it personally.

BLOOM: What qualities does someone need in your role?

Joanna Miedzik: Patience, empathy and a positive attitude. You have to be good at abstract thinking for problem solving. Sometimes it’s like being a private detective, where you put the puzzle pieces together.

BLOOM: I think you probably have a unique window into hospital life from where you sit.

Joanna Miedzik: I definitely have a revolving door around me. Some people are waiting for a taxi, or a parent is waiting for their child to get out of therapy. They come to chat. You do hear about their pains and their thoughts and their frustrations and their fears.

You also have the opportunity to share some pretty amazing moments. Like when you build a rapport with a mom over six months. And one day she comes downstairs to your desk, squealing with excitement, to show you her phone and a video of her son taking his first steps. And you cry together and hug. ‘I get it,’ I tell her. ‘I remember when I took my first step. I get it, and I’m thrilled for you.’

Sometimes an inpatient mom comes because she’s upset that her son’s stay has been extended for another six weeks. I tell them that an extension is progression, that the physicians see potential for more improvement.

BLOOM: If you could change one thing about Holland Bloorview, what would it be?

Joanna Miedzik: It may not be realistic, but my wish for Holland Bloorview is to treat our clients longer. When I finished up here and was thrown into the real world, it was absolutely horrifying. I didn’t receive the help I needed. I was out there and I was lost and we had no support and no follow-ups.

So it would be a dream for Holland Bloorview to take the children they’ve cared for all their life, and not give up on them at the age of 18. Extend the care into early adulthood to ensure clients are psychologically and physically safe, and know their routine, and know the doctors they have to see on a regular basis.

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

Joanna Miedzik: I think Holland Bloorview is doing a pretty amazing job as it is. When I was at Bloorview, we didn’t have many of the support groups for kids and siblings, and extra-curricular activities, that you have now. I think Holland Bloorview is heading in the right direction with those groups and sessions.

I’d love to see more help for the parents. And I’d like the opportunities to be for families with all diagnoses, not just for a particular disability. Every disability is valuable, and deserves the same kind of attention.

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Bobbi finds her dream job in health records

By Louise Kinross

Bobbi Champagne is a self-described nerd who loves technology and medicine. She came to Holland Bloorview as a George Brown health information management student in 2015, and was hired after graduating. Since then she’s moved through a number of roles to health records analyst. Last year Bobbi applied for No Boundaries funding and ran a highly successful parenting workshop on video gaming and safety. “I love video games, and I know a lot of parents don’t,” she says. “I felt I could give parents a really good insider perspective on what online gaming is, and how parents can get comfortable setting boundaries.” This interview is part of a series of candid interviews with staff about what it means to work in children's rehab.

BLOOM: How did you get into this field?

Bobbi Champagne: I was always really into medical science and computers. I’m a huge nerd. I’ve even built my own gaming computer. I thought I wanted to go into psychology but I’m not someone who enjoyed being in school a lot. I studied cognitive science at the University of Toronto. But I found it way too theoretical for me. The George Brown program was a happy medium: it was practical, involved technology and dealt with health information.

BLOOM: What is a typical day like here?

Bobbi Champagne: In my regular job I monitor all of the transcription workload, the patient reports that go to Connect2Care portal, and I answer questions from families who e-mail support questions.

BLOOM: What is it like to transcribe reports?

Bobbi Champagne: It’s getting to hear the doctors go through their cases and explain the situation. Every child’s situation is completely different. You never hear a report that’s the same, whether the child has autism or cerebral palsy. I think our doctors do a really good job of making it about the client’s adventure and journey through the system, vs. just the medical story.

I’m also involved in medical coding on each inpatient that we submit to the Canadian Institute for Health Information. And I played a major role in our scanning project. We’re scanning all of our paper charts into our electronic health record, so it’s completely electronic.

BLOOM: What is your role in our upgrade to a more user-friendly electronic medical record?

Bobbi Champagne: I was seconded for a day and a half each week as the co-team lead for the health information team. We’re responsible for the build of the health information management application, medical coding, scanning and archiving and transcription. Meditech Expanse is a new system. It’s like we’re rebuilding in a new way.

BLOOM: What are the joys of your job?

Bobbi Champagne: I definitely like working with technology every day and my job has gotten a lot more exciting being part of the Expanse project. I feel I’m able to make big decisions on how our new system will run and work, and the work flows for our department and for transcription.

I’ve been lucky to have the opportunity to work on the Expanse project and in my day to day work I’ve become the tech support for our department. People in our department will come to me before they go to information systems. I like being able to help people.

I ran into a mom in the elevator and she was crying and apologized to me. I ended up talking to her, and letting her vent a bit. Even though I’m not clinical, being able to reach out to families when I get a chance means a lot.

Bobbi Champagne: What are the challenges?

Bobbi Champagne: The paper. Since I started our department’s goal is to be as paperless as possible and it can be really difficult to get everyone on board with that. Even for me, I prefer to write paper, handwritten notes. So to get everyone to shift to reading documents on their computer can be difficult. The transition from paper to electronic in health care is a difficult one.

BLOOM: What can help staff make the leap?

Bobbi Champagne: I think the demonstrations we’ve done in the cafeteria where we show how the system looks and works, and expose them to why it’s easier, helps.

BLOOM: What qualities does someone need to do your job well?

Bobbi Champagne: You need to have an interest in technology. For transcription, you need to be a quick typist. You need to multi-task, and you’d want to be interested in medical science. You have to have some level of medical and physiological knowledge to transcribe, and to notice when there’s a discrepancy between what’s dictated and what’s going on.

BLOOM: So you go back to doctors to clarify?

Bobbi Champagne: Yes. The full-time transcriptionists let me know if there are any discrepancies in the information, or if they can’t make words out.

BLOOM: What have you learned about families?

Bobbi Champagne: They’re very resilient. I don’t know if I could put myself in their shoes. Especially the inpatient families that are here every day, and their kids are going through really extreme, intense therapy. They have the resilience to come back every day and have faith that their child will do better.

BLOOM: Why did you decide to run the gaming workshop for parents?

Bobbi Champagne: When the No Boundaries funding came out, I had this idea that I wanted to get more involved with our families. Being in an admin role, I don’t get to help them directly. I have a specific knowledge set and interest in gaming, and I felt I could use it to inform families. The workshop was called Gaming and Social Media Tips for Parents.

I talked about video games and online safety, and the social worker, Gabriella Carafa, talked about parenting strategies. The parents were amazing. They were super receptive and engaged and asked lots of questions. At the end, they thanked me and said they’d learned a lot and gained perspective on what kids can be exposed to online. I was extremely nervous to host it. But I think I did exactly what I was hoping to do, which was fulfilling.

BLOOM: If you could change one thing about Holland Bloorview, what would it be?

Bobbi Champagne: Improving the navigation of the health system. I know we already work hard towards that, but figuring out where to go and how to get help, and navigating the application forms for funding, can be very difficult—for us and the families. Even though we have a single-payer system, it can still be difficult to figure out how to get extra support, especially as children get older and transition into adulthood, or transition here from out of province or country.

Got an idea for a staff member who would make a great interview? Message Louise at lkinross@hollandbloorview.ca. This interview was suggested by Sean Peacocke.

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Jess translates studies into words that families understand

By Louise Kinross

Jess Silver is passionate about health and how we translate research into words the average person can understand. She works as a research assistant in Holland Bloorview’s Prism lab, where one of her roles is to write and edit materials targeted to youth and families. We spoke about how her own experiences growing up with a disability inform her work.

BLOOM: How did you get into this field?

Jess Silver: My passion with medicine and health came out of my own experience growing up with cerebral palsy. I was always looking for other avenues to improve my own situation. I wanted to go to medical school, but I knew that would be challenging because of my physical limitations.

I found out about a medical communications program at the University of Chicago on how to create content that will be easily understood by the general public. I graduated from that program, and now in the work I’m doing, I feel I have a responsibility to help other patients and their families understand clinically what they’re going through. I’ve always been looking for innovative perspectives and solutions that can help me and benefit other people.

BLOOM: What is a typical day like for you?

Jess Silver: I may be editing or writing materials, or scoping out medical databases on a particular topic.

BLOOM: What’s an example?

Jess Silver: Right now I’m working on a project to see whether meditation can benefit a child using a brain-controlled interface to communicate. A lot of the work we do in the Prism lab involves developing technology that allows children who are non-verbal to communicate.

In general, I look at how to edit syntax and grammar and language to make it concise and understandable for the families we’re working with today.

One of my most interesting projects to date was working on an article about Holland Bloorview’s family engagement program in research. I was writing about what the family engagement program does at Holland Bloorview, but also including my own informed perspective as a patient.

BLOOM: Did you come to Holland Bloorview as a child?

Jess Silver: Yes. I went there mainly for physical therapy. I did physio and the Fit and Flex exercise program. I also saw Dr. Wedge for pain, and when I was older I saw Dr. Fehlings.

BLOOM: Did you feel you got the services that you needed?

Jess Silver: Yes. I felt the resources were there. But as a family, we were always looking for more. We believe in Eastern medicine, and we were always looking for alternative approaches to compliment the conventional ones.

BLOOM: Was it challenging for you to move to adult care?

Jess Silver: There were gaps. My parents and I had to do everything on our own, in terms of finding who was going to help me, and what was out there to benefit me. We did receive services through the transition team here, but when I went to university, I found all of the advocacy, and figuring out how everything would work, and how I’d be integrated, fell to me. I felt like I was well prepared, but it I still found it incredibly challenging.

I did my undergrad at Glendon College, and I was the only one in a wheelchair at my campus. I had to explain to everyone that these are my challenges, this is what I need assistance with, and this is how we can work together. Then it was trying to get people to realize that although I have this challenge, it doesn’t mean I’m so different from you. I’m here to get my education.

BLOOM: What is the greatest challenge of your work with the Prism lab?

Jess Silver: The most challenging thing is not having an engineering background, and having to understand the terminology and the workings of devices that are created in the lab. You need to understand protocols for how to develop materials that are digestible for patients, but you also need to understand yourself how this device works and is constructed. Most of the other staff are engineers.

BLOOM: I’ve always had a pet peeve with academic language. I wish we could see lay language in journals.

Jess Silver: It does make things more difficult. What I find so rewarding now is being able to understand that language and, because of my background, knowing how to present it in a way that everyone will understand. When I was a kid and didn’t understand, I'd say ‘Whoa, what did that physician or specialist just say?’ But now I know what they said and it’s rewarding to be able to translate it.

BLOOM: You mentioned that you work remotely?

Jess Silver: Yes. I live in Thornhill and it was difficult for me to commute every day. Also, because of my physical needs, I need assistance from someone for my personal needs. Working remotely allows me to do what I have to do in order to have my quality of life, but still work.

One thing I do find challenging is not being able to be at every meeting or event. But the team is very open to it and accepting. It’s just my responsibility to remind them that I have to be on the meeting with Zoom, or I need to access certain materials.

BLOOM: What’s the greatest joy of your job?

Jess Silver: It’s to know that I went from being a patient, and somebody who lives the experiences that many of our kids do, to working as part of the hospital. I can speak to many of our clients’ challenges through my own experiences, and am able to write in a way that can help a family understand a condition or be able to find the care or resources they need.

I also run my own non-profit for adapted fitness and sports called Flex for Access.

BLOOM: How does that work?

Jess Silver: It creates awareness and raises funds to facilitate adaptive training sessions for individuals who have physical challenges. So we would fund a person’s training, and connect them with a gym or studio that can do it.

BLOOM: I notice you use the word challenge and not disability.

Jess Silver: Yes. I feel that everyone has some kind of challenge, on some level, and mine is just more visible because I use a wheelchair. I never let my disability get in the way of things that I do and pursue. Just this weekend I went indoor skydiving. Through my job at Holland Bloorview, and running my own non-profit, I feel I’m an agent of change.

BLOOM: If you could change one thing about children’s rehab—or research into it—what would it be?

Jess Silver: That’s a good, but difficult, question to answer, because there are many things. I’d encourage people, if they’re given one diagnosis, or one option for rehab, or one way of thinking about a diagnosis, try not to be boxed into that. Okay, yes, this is what it is. But seek other options.

If I could change something in research, it would be to bring a more holistic perspective to the interventions offered as possibly being helpful. For example, the article I mentioned looking at how meditation can or can’t help kids communicate.

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Pushing a tube down your nose hurts. Lorry knows firsthand

By Louise Kinross

Lorry Chen has a passion for promoting access to healthy food. “I wanted to solve world hunger,” she recalls of her time in dietetic school at Western University. For 28 years, she’s been a clinical dietitian at Holland Bloorview, initially working at our Bloorview site. She now works with our brain injury and orthopedic and developmental units, as well as in an outpatient nutrition clinic. We spoke about how she chose her career, and an instrumental preceptor at the Hospital for Sick Children who had Lorry put in her own nasogastric feeding (NG) tube, so that she’d understand what it felt like for patients.

BLOOM: How did you get into this field?

Lorry Chen: We emigrated as a family from Hong Kong when I was 12. Our aunt sponsored us. My parents wanted to come to Canada to have a better life for their children. At that time, in Hong Kong we were required to speak Cantonese or Mandarin. I had no English. Before we boarded the plane my aunt told us 'You need two phrases: Excuse me and thank you. That way you’ll be able to get out of your seat to go to the bathroom.'

Throughout school, English was my weakest subject. My guidance counsellors in both elementary and high school said I don’t think you should aim for university. Luckily, I hung around with great people, and all of my friends were aiming for university and said I should try for it. I was the first one of my siblings to go. I initially took science.

That was when I wanted to solve world hunger. I loved nutrition and thought I could go into the lab and make a super plant. That’s all good in theory, but there were two problems. One, I had a black thumb. And two, undergrad experiments often involved animal models, and I have a phobia about rats and mice. At about this time I met my future husband and he said ‘You’re interested in nutrition, why don’t you look into dietitian school?’

BLOOM: How did you move from your training to working with children?

Lorry Chen: After a four-year degree, you have to apply for an internship, or you can’t become a registered dietitian. I did my internship at SickKids and I loved it.

BLOOM: Why?

Lorry Chen: I learned so much. The dietitians there were so dynamic. My first clinical rotation was in cystic fibrosis. I had two lovely patients who made me reindeer and Santa magnets when they were doing crafts. I was at SickKids when they discovered the cystic fibrosis gene. Talk about being in the epicentre of discovery! And that spawned my passion for research.

BLOOM: What did you do after SickKids?

Lorry Chen: The internship was for a year. After that I got married and then I typed and hand-delivered resumés to all of the hospitals in Toronto. I had to take the bus everywhere. I applied to North York General and a friend of mine said Bloorview is just down the street, you can walk there from North York. So I dropped off my resumé and voila—I got an interview and the HR person hired me right after. I’ve been here ever since. 

BLOOM: What is a typical day like?

Lorry Chen: It’s changed so much from 1990 to now. In 1990, I might have one or two patients who were on g-tubes. There were no NG tubes. Now, at any time, I will have five to 10 patients who are on g-tubes or NG tubes. The complexity of our children has increased. Most of my patients have a tube through their nose.

BLOOM: I’ve heard that those nose tubes are extremely painful to put in.

Lorry Chen: When I was doing my cystic fibrosis rotation at SickKids, the dietitian felt we needed to experience what it was like to place one, so that we could have empathy.

BLOOM: That is so smart! Did you put them in for each other, or on yourself?

Lorry Chen: We did it ourselves. It was so hard. I thought I was going to gag and throw up in front of my preceptor and everyone else. That’s why I can relate to an adolescent who needs an NG tube. I’ve put one in myself. Also, before I recommend any kind of feed, I taste it myself and I have my students taste it.

BLOOM: So feeds kids would get by tube?

Lorry Chen: Yes, because sometimes you burp, and then you will taste it. I want to be able to tell them if it’s not the most pleasant taste.

BLOOM: What’s the greatest joy of your job?

Lorry Chen: Taking the NG tubes out! Last week I had two come out. It was the best week ever. The patients and the parents were over the moon. It was a gold-star day.

BLOOM: Besides your work with tube feeding, what other type of work do you do?

Lorry Chen: We’re big on the clinical practice guidelines on bone health. Often I’m asked to make sure if a patient is at risk—especially if they have a spinal-cord injury—that they have appropriate calcium and vitamin D intake. Another part of the job is working with children who are too skinny or too heavy.

BLOOM: I was on a panel at a Food Summit on Monday, and it was for food centre staff who work with people who can’t afford to eat at all, or to eat well. It got me thinking about our families, who are often strapped financially with all of the extra costs of raising a child with a disability. Is that an issue for inpatient families you work with?

Lorry Chen: Oh yes. Patricia Rebia, the clinical assistant in our nutrition clinic, and I have been chatting about applying to the No Boundaries fund to provide tools to families about how to eat nutritiously on a very tight budget.

BLOOM: Perhaps we could also develop a partnership with a food centre locally, or with our foundation. What is the greatest challenge of your work?

Lorry Chen: When you work, and put in your best intentions with a client, but things aren’t going the way you envisioned. For example, if a child has a huge food aversion and he’s not eating.

BLOOM: When my son was an inpatient here, he went on a hunger strike. He was in a body cast and was taking so many meds and was in pain. So he refused to eat.

Lorry Chen: Literally, there are clients that go on hunger strikes. Luckily we can give them an NG tube that provides nutrition, but we want a happy balance with oral intake. Sodexo as a group have been very responsive to some of the food requests we’ve made. Sometimes I’ve brought in some of my kids’ toys from home, if a child responds well to positive reinforcement with toys.

One thing I do communicate with caregivers, when a child won’t eat, is that ‘He’s the captain of the ship. We’re just passengers. We have to let him lead.’ Choosing whether to eat is one of the only things children have control of in hospital.

BLOOM: That’s right. What emotions come with the job?

Lorry Chen: The two extremes. Wonderful joy—when I got to take out two NG tubes last week, I was dancing down the hallway. Stress—when you’re grappling with what can I do to help a child, because the things you’re trying aren’t working. 

BLOOM: How do you manage stress?

Lorry Chen: I’m an exercise fiend. I’m at the gym at 5:30 in the morning. My husband and I go. He kicks me out of bed. We go to a cycle-fit class. Then I take a shower and come to work. On the weekend I do yoga. Exercise, absolutely, is my stress relief.

BLOOM: What kind of qualities does someone need in your role?

Lorry Chen: As dietitians, we tend to be very precise—sometimes too precise. I’ve learned that a little flexibility is a good thing. Sometimes, when there’s an emergency, you have to come up with a solution that may not be ideal, or might have flaws to it, but you do the best you can with a solution, while mitigating all the risks.

BLOOM: You must be good at explaining things.

Lorry Chen: The car is a great analogy for the body. Everyone knows how a car works, so they understand that food is like fuel for your body. When kids say they don’t like breakfast, I tell them to think about how their engine has been idling all night, and when you put your foot on the gas, but the tank is empty, you stall. I tell them breakfast can be different things to different people. It could just be a glass of milk, or a piece of toast.

BLOOM: If you could change something in children’s rehab, what would it be?

Lorry Chen: Always the resources available to our families. Here I think we’re well supported, but in the community, I often find that there’s not enough. I wish there was a barometer that I could use to assess how much support a family needs, and then be able to give it to them.

BLOOM: If you had to give yourself advice on your first day, but from where you stand now, what would you say?

Lorry Chen: Two words: patience and flexibility.

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Nick turns to teens to help raise reporting of concussions

By Louise Kinross

Nick Reed is an occupational therapist who joined Holland Bloorview as a research associate. In almost six short years, he’s become a senior clinician-scientist, co-director of our pediatric concussion centre, and most recently, the Holland Family Chair in acquired brain injury. He’s passionate about bringing an occupational therapy lens to rehab for children with sports and other concussions.

It all began when he followed a youth hockey team for a season as part of a graduate research project. Nick put sensors in the players’ helmets, then tracked the number of times they were hit in the head, and how hard. “That opened my eyes to what research could be,” he says. “There weren’t a lot of occupational therapists working in pediatric concussion. I saw it as an opportunity to carve out a niche.” We spoke about his early days and how he’s grown Holland Bloorview’s concussion centre into an internationally recognized leader.

BLOOM: How did you get into the field?

Nick Reed: Growing up I played every sport under the sun. I started lacrosse at age five and played through university and Junior A and was drafted into the National Lacrosse League. So sports were big for me, and I always had injuries. I thought I wanted to bring health care and sports together, and that I’d go to med school or physio school.

One night in third year of my undergrad, I went to an information night on physio. But they ended up presenting first on occupational therapy. It blew me away: This idea that a knee isn’t just a knee—it’s a knee on a body on a person in a family in the community. Thinking about this holistic focus on the person and asking the person what they need—not making assumptions—excited me. I took the leap and changed my plans.

BLOOM: What is a typical day like now?

Nick Reed: A busy one. It’s an exercise in prioritizing across different demands. I’m no longer directly in the clinic but I support our clinics with advice and integration of research. In the early days it was the physicians and me—I was the rehab team. As the clinic grew and we secured more funding and brought on more staff, my role transitioned to focus more on the research, teaching and advising.

BLOOM: One of the clinics it the persistent symptoms clinic.

Nick Reed: It’s our flagship clinic. It’s a globally funded outpatient clinic for kids who have had concussion symptoms for four weeks or longer. We also have an early care clinic that is fee for service for children with a concussion that’s four weeks or less old. They come in to get diagnosis, consultation and rehab.

While I advise these clinics, the majority of my time is spent growing and directing our research program as a clinician scientist.

BLOOM: Can you tell me about that?

Nick Reed: It’s quite large. We have about 20 projects, and five or six of them are major grants. The one I’m most excited about now is a Canadian Institutes of Health Research grant. We want to extend our thinking in novel ways about how to raise awareness of concussions and change behaviour in reporting them among youth.

BLOOM: Why is there still a problem with teens pretending they’re okay when they’re not?

Nick Reed: There are two reasons. The sport culture of never being allowed to be hurt: ‘Just rub some dirt on it and get back out there.’ I had my own concussions, and we didn’t talk about it, we just kept playing. And people didn’t know a lot about concussions—they didn’t know the signs and symptoms.

Eighteen high schools across Canada will be part of a project we’re launching in September. We’ll be getting them to create concussion clubs—to raise awareness of symptoms and what to do, and to provide support to peers who have concussions. Young people will come up with creative and relevant and meaningful ways to educate their peers.

All through this process we’ve had high school students tell us what works and what doesn’t. They’re co-investigators. For example, we created an online portal to support them, and we thought it looked amazing. We took it to a local high school that has a cyber arts program to get their opinions and they didn’t like it at all.

BLOOM: Why?

Nick Reed: They said the colours and feel were too corporate. So we handed over the reins to them and they came up with a whole new colour scheme, logos and flow. One of our family leaders—Gideon Sheps—linked us to that high school. It goes back to that occupational therapy idea of anyone you sit down with is the expert in their own domain. The real strengths come from the person we engage with—whether it’s clinically, or in this case youth in their high school.

BLOOM: What’s the greatest joy of your job?

Nick Reed: People. Engaging with people and watching and supporting people do amazing things. Whether that’s working with and learning from my PhD and master’s and undergrad students, watching them develop and grow and become inspired. It’s a dream, a real luxury of academia. You’re able to build relationships over time, over years.

And it’s not as ‘I’m a supervisor,’ but ‘We’re in this together. I’m learning from you as much as you from me.’ Working with people—whether it’s with sports organizations in the community, schools or youth or family members—is what drives me to get up every day. To be part of a team and engage as many people as possible in a meaningful process that will make a difference.

BLOOM: What is the greatest challenge?

Nick Reed: My role is unique. I’m not just a scientist, or a clinician or an educator. I see myself as all of these things, and we’ve attempted to design our program to integrate all of them. We want to break down the silos. So trying to bring it all together is the greatest challenge. You can’t do meaningful research without the knowledge and experience of sitting down with the families who need it. We’re here to help at every step of the way, be it in our clinics, or through the research and education and support. But these programs fall under different areas in the hospital. So it’s trying to integrate them so we have proper communication and all work together.

BLOOM: What’s the biggest misconception about concussion?

Nick Reed: There are two ends of the spectrum. One is that continued thinking that ‘it’s not a big deal.’ It is a brain injury and it’s a serious injury if you don’t receive medical attention and diagnosis, so you have the potential to prevent repeated injury.

On the other end of the spectrum is hysteria about concussion. We read a lot in the media about brain disorders like depression and Alzheimer’s, or we hear about a professional athlete with serious issues who has died by suicide. A parent may feel ‘If my child has a concussion, everything will change forever.’

We need to tailor a message to land in the middle. It is an injury you want to get treated, and to have rehab support along the way. But it’s also an injury we can manage, for the most part, for most kids. About 70 per cent of kids will feel well within a month. The probabilities of getting back to what you love to do are extremely high.

BLOOM: What emotions come with the job?

Nick Reed: Being in academia and health care, there are always challenges with regards to funding, or to sustaining a program. But I’m a very positive person and I’m always optimistic. That’s good for someone in my role. I truly believe if you put good stuff out, that good stuff will come back. And if you co-create with the people who need it, you will do work that matters.

BLOOM: Do you have problems with overworking?

Nick Reed: I do wear a lot of hats and have a crazy schedule. I think we all do. There was one time two years ago when I got shingles and my body shut down. I had three little kids at home, and I was balancing that with work and my personality of ‘go, go, go.’ I live off adrenaline. I don’t have caffeine, but I get up early, at 5:30.

Three days a week I go to Variety Village. I run the track, do a little bit of weights or play a bit of basketball and swim. I need to be home by 7 to make my kids’ lunches. The other days I tend to get up early and work, either at home or here. Physical activity is a big part of my life. My father had a heart attack at 45, when I was in early high school, and he did his rehab at Variety Village. I really appreciate the opportunity there for my family to be exposed to individuals of all abilities and ethnicities and cultures. I get great questions from my kids, who are seven, five and three.

BLOOM: If you could change one thing about children’s rehab as it applies to concussion, what would it be?

Nick Reed: It’s what we’re trying to do—really focusing on the child. So having the perspective that what this child needs, and loves to do, really matters. They have an opinion, even if it’s a little guy, and we need to engage the child actively in rehab. I’m really proud that we do that at Holland Bloorview, and not just in concussions. We need to move past a focus just on symptoms like headaches to ‘How do you feel? What do you want to do today? What can I do to help you do the things that make you happy?'

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A pharmacist who burnt out has a new mission: mental health

By Louise Kinross

Amy Hu is a pharmacist at Holland Bloorview who became interested in children’s rehab after doing a student placement here. She’s been with us for seven years, was the clinical pharmacy coordinator, and is moving into a new role with our quality team. I know Amy from the weekly staff mindfulness sessions offered by social worker Anne-Marie Batelaan. Amy says it was her own experience with burnout that made her want to talk about the importance of staff mental health. ‘I’d like to make staff mental wellbeing a priority in our organization,” she says.

BLOOM: How did you get into this field?

Amy Hu: I fell into pharmacy because I wanted to do something with science that involved helping people. In second year I had a placement here and discovered this amazing place. I learned about the uniqueness of working in a rehab setting. Most people in pharmacy work in an acute-care or community setting, and pediatric rehab is such a niche. The unique part is how we get to follow clients for much longer than in acute-care. That means you really get to know not just the client but the whole family, and it’s very gratifying from that perspective.

I came here after the hospital moved into our new building. The natural light throughout the building, and the idea of bringing nature in, was so different from other older hospitals I’d been in. It's a healing environment.

The clients and families are resilient and courageous and inspire you every day, and the staff are incredible. The breadth of care we offer, and the amount of skill and passion people bring to their work, left a huge impression on my mind as a student. After my schooling and training, there was an opportunity here and I snatched it up.

BLOOM: What is a typical day like?

Amy Hu: There’s a lot of activity happening in the basement. That’s the control hub of medication management in this hospital.

The pharmacists could be rounding with the interprofessional team, reviewing medications with families, calling a community pharmacy to help transition a family back to the community, or helping to wean a client off of pain medicines.

Our technician team could be preparing medicines for our inpatients and adjusting them constantly as they change over time. We also sit on many hospital committees to ensure medication safety and do project work at a higher level. We mentor many students and end up hiring about half of them. So there’s a great variety of clinical and project and teaching work. We also support clinical trials at the hospital.

BLOOM: How many people work in pharmacy?

Amy Hu: There are 10 bodies overall and we have just under three full-time pharmacists.

BLOOM: How did you move from being a pharmacist to your coordinator role?

Amy Hu: I think it speaks to the increasing complexity and acuity we’re seeing in our population, which I feel started about five to six years ago. I realized that the clinical skills I learned in school weren’t enough to serve the clients here, whose needs were shifting. It required more collaboration and problem-solving at a higher level and more leadership skills. So I went back to school for a master’s of health administration while I was working here.

BLOOM: How did you do that?

Amy Hu: It was an incredible program at the University of Toronto that enabled me to take two days off every three weeks, and you carry close to a full-time work load and do courses back to back. It allowed me to bring real-world problems and issues into the classroom, and what I learned I could apply back here. I loved the program and use the skills I learned every day.

Now I’m about to move onto our quality team in a new role the organization has supported. The goal is to support front-line teams on projects related to quality or process improvement. It’s something I'm passionate about, and have done for the pharmacy team as a coordinator, but I haven’t had a chance to work with many other teams. This role will allow me to work with inpatient and outpatient teams across the hospital. I'm really looking forward to meeting and learning from our teams, understanding their work flow and hopefully bringing forth meaningful change.

BLOOM: What is the greatest joy of your work?

Amy Hu: Meeting the amazing people at our hospital. It takes special people to work here, to be a nurse or a social worker or a therapist or a therapeutic clown. It’s incredible to have everyone working together, and that includes the non-clinical staff from departments like information systems, teaching and learning, the research institute and our leadership team.

BLOOM: What is the greatest challenge?

Amy Hu: The greatest challenge is that there’s so much that can be done here and so many well intentioned people, that it’s easy to go overboard.

BLOOM: You mean in terms of staff?

Amy Hu: Yes. These days on the frontline I feel like it’s rare to bump into somebody who is coping really well. There can be a lot of stress and symptoms of burn out. That's concerning. It affects people’s capacity to do the work they love to do. Clinicians are put in positions where they have to say I would really like to do this, but I just physically can’t. How do I choose? That’s a tough place when you’re trained as caregivers to give.

BLOOM: What kind of emotions come with the job?

Amy Hu: All the myriad of human emotions. Like many other people, I have high expectations on myself and feel guilty when I feel like I should be doing more. There’s work stress, and then conflicts between team members can be challenging as well. A couple of years ago it really kicked in for me and I burnt out.

BLOOM: What happened?

Amy Hu: Work was really tough and I had a family crisis on the side. I remember one day sitting in front of my computer, double checking a medication order before it went to the unit, and the words were not registering. I thought to myself: ‘What am I doing here? This is not safe. I need to stop.’ With the support of our occupational health nurse, my physician and my team, I was on stress leave for almost two months.

BLOOM: What did you learn?

Amy Hu: As a clinician, you never intend to get to a point where you can’t work. I really learned my own limits. I’m human and I’m fallible and I need to take better care of myself. I needed to actually learn how to be kind to myself. While I was off, I took the mindful self-compassion course, and that was transformative for me.

BLOOM: That’s the course that our social workers Anna Marie and Dagmara offered to staff here recently.

Amy Hu: Yes. It's amazing that this program was offered here. I did it elsewhere. It helped me to get back to work stronger than I was before—to be more present, and to take time to reflect on what’s important to me, what I value, and how can I bring more of that into what I do. I acknowledged that I needed help from counsellors and mentors. It was a very humbling experience.

BLOOM: What do you do differently now?

Amy Hu: With practice, I can take micro pauses throughout the day and become more aware of my experience. I notice if I’m getting triggered, or if certain emotions are coming up, and I allow them to be there. By pausing, leaning in to the emotions, and befriending them, I find I can respond in a kinder way. 

In the past, I was relentless at pushing myself beyond my capacity. Now I say ‘Let’s take a breath.’ The self-awareness helps to regulate my emotions and I also find it helps me to be with the challenges that other people may be experiencing. Finding inner compassion helped me to be a more empathetic person and to better support the people around me.

BLOOM: I think many staff may feel burnt out, but are afraid to approach someone with what they’re going through.

Amy Hu: That’s why I want to share this story. I think there can be a lot of fear and shame and guilt around recognizing that you may need more support. And it’s not your fault.

The work is quite challenging: we go towards people’s suffering every day. There can be stigma around seeking support, and it’s so important to share the message that getting help is okay. In fact, it takes a lot of inner courage and kindness to go towards our own challenging experiences and emotions.

I had to learn that getting support didn’t take away from my ability to perform—it enhances it in so many ways. I gained so much self-knowledge from this experience and that enabled me to bring a lot more depth and care into my work.

BLOOM: So when you came back from leave, were your hours staggered?

Amy Hu: Yes, it was a very gradual approach over many weeks, and I kept the counselling support on the side. My manager and teammates were very accommodating, and I'm grateful for their support.

BLOOM: Was it hard to find a therapist?

Amy Hu: I started with our Employee Assistance Program, and then they suggested I find someone I can work with over the long term. That has been incredibly helpful. 

As I transition into my new quality role and train my team members, sometimes they ask me ‘How do you do it all?’ I remind them that I continue to seek counselling support for my own wellbeing.

For another person, maybe it’s not a counsellor that makes the difference—maybe it’s a friend or a colleague that you trust who is able to be there for you. Through that relationship and self-reflection, you come to a deeper level of understanding yourself. There are people who care and can support you. No one has to do it alone.

BLOOM: What qualities are important on the pharmacy team?

Amy Hu: The medication safety process is so intricate that you need to be detail oriented. Collaboration is also crucial because it takes the whole team to deliver the right drug to the right person at the right time. One person can’t do it. You need a lot of problem-solving skills. And more and more, we need resilience to change.

BLOOM: You said there’s been a change in the type of clients who come through our doors.

Amy Hu: They’re coming in with more medications, and more acute medications that have higher risk profiles. Our clients are also younger, so they’re more vulnerable in general to side effects of medicines. We’re also seeing a psychosocial complexity with the families we’re working with.

BLOOM: What’s an example?

Amy Hu: We may be supporting families who are involved with children’s aid, or who are trying to cope with huge financial challenges. Finding them drug coverage is becoming more challenging. Our families are pulled in so many directions. Trying to figure out equipment, where will they live, how do they feed their child, and on top of that there’s the medication. It’s a lot for them to manage, and in a short period of time. We work with our social work colleagues and our whole team to try to problem solve.

BLOOM: How do you cope when, despite best efforts of everyone on the team, an error occurs? Because we know that every person in this building has made a mistake at one point or another.

Amy Hu: When medication incidents happen they can be very challenging. We have a good system from a problem-solving perspective. We have a clear process to disclose to the family. As a team, we come together to debrief about where the system could have gone wrong, what the contributing factors were, and what we can do to reduce risk moving forward. From this process perspective we’re very experienced.

The part I find more challenging—and I know other clinicians find challenging—is the emotional impact. It’s the guilt and self-judgment of ‘How could I have done that? How could we have failed?' It’s a tough burden.

No clinician wakes up with the intention to harm somebody. When the stress isn’t so high, these incidents don’t happen. They happen when the system is being stretched, often for a long time, and relies on humans to hold it together, and something eventually falls through the cracks.

These incidents stay with you, and they affect your sense of competence. There's not too much about this in the literature yet. I know from speaking with colleagues at other hospitals that this is something they struggle with.

BLOOM: I know that in the narrative group for inpatient nurses we ran, participants came into the intervention thinking that they were the only ones who struggled with guilt or regret when an error occurs.

Amy Hu: I agree. That’s why I believe we need to place more priority on debriefing, and foster psychological safety in these conversations, so clinicians aren’t living with the guilt and fear by themselves. If you can process as a group what happened, find support in each other and feel you’re not alone, it helps everyone to cope better. I think it takes time, and every person may be at a different stage of readiness for conversations like this.

BLOOM: If you could change one thing about our workplace, what would it be?

Amy Hu: It would be to make staff mental wellbeing a priority in our organization. That could be at multiple levels. We could support teams to have open conversations about challenging experiences that make clinicians feel vulnerable. It could be supporting more mindfulness programs at the hospital, so more staff have access to these tools.

It could also be at the individual level—for each of us to reflect on what wellbeing means to us, what matters to us, and what we can each do to support ourselves and each other. It takes a whole village to run this operation and care for our children and families. We need a cohesive approach to addressing this.

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