'Foolishness' plays a critical role in rehab

By Louise Kinross

The ‘fool’ in Shakespeare’s plays and the ‘trickster’ in Indigenous stories held an important role in upending the status quo. A Holland Bloorview paper published this week in the Journal of Medical Humanities notes that the foolishness of therapeutic clowns—their emotional vulnerability and willingness to fail—is at the heart of their work with hospitalized children, producing a ‘joy without demands.’ Clown practices, however, are often seen as ‘secondary to the real work of medical professionals,’ and devalued.

Lead author Julia Gray, a post-doctoral fellow at Holland Bloorview, argues that all clinicians and researchers could benefit from embracing aspects of foolishness in their own work. BLOOM interviewed Julia about the paper, called Seriously Foolish and Foolishly Serious. It looks at how clowning creates a space of vulnerability, surprise and the unknown in which children feel agency, as well as the freedom to express sadness, despair, pain and delight. This spontaneous, undirected, flexible practice isn't usually taken seriously in a medical world grounded in science, expert knowledge and quantifiable outcomes.

BLOOM: Why was there a need for this paper?

Julia Gray: It came out of things I was observing anecdotally about the clowns’ role at Holland Bloorview, and in other hospitals, and reading in academic literature about how clown practice is framed. I was seeing a strange tension between admiration for the clowns and an attempt to legitimize them by framing them as a medical practice. They had to have certain kinds of medical goals, or be supporting the medical goal of other professionals.

As an artist and scholar myself, it seemed such an odd way to try to legitimize what they do. The arts do things that may complement medical goals, but they also do other things: they help us be in the world, they help us feel things, they help us see things differently, and they help us see ourselves differently. Those [experiences] are really important in a health setting, but they tend to be overlooked generally, in practice and in research.

BLOOM: What kind of knowledge has traditionally been valued in children’s rehab?

Julia Gray: Science tends to be valued, and particular kinds of science—objective research.

BLOOM: So quantitative over qualitative research. You also wrote about “high knowledge.”

Julia Gray: Yes. It’s quantifiable, an intellectual prowess that is valued, reasoning. It comes out of the Enlightenment, and the roots of scientific method are revolutionary and incredibly important. But when you value that over other ways of being or knowing, it has the potential to exclude people who may have different abilities and strengths.

BLOOM: You wrote about how foolishness is central to the role of the clown. Why is emotional vulnerability, and a willingness to fail, important to hospitalized children?

Julia Gray: Our rehab practices are continually encouraging them to be independent, and that independence is where strength is, as opposed to being vulnerable. They’re supported to be a certain kind of ‘strong.’ That has implications for how children with disabilities see themselves. Some of them are never going to fit that mould.

Rather than pushing children to fit a particular mould that we understand to be success, we need to think more about what ‘that success’ is? At a philosophical level, it asks us to question what it means to be a human being. Is being independent and self-sufficient valued, above all else? Is it holding down a particular kind of job that makes more money? Or is being playful and joyful enough?

BLOOM: One of your co-authors, Barbara Gibson, is a physiotherapist, which is a more traditional clinical role in children’s rehab. As authors, you note that typically, play in children’s rehab is not an end in itself. It’s always tied to a therapy goal or achieving a developmental milestone. Why is this problematic?

Julia Gray: I think it comes back to what does it mean to be human? Is it not enough to play? Why do we need to use play to control development and decide what is 'normal' or 'abnormal' play? I sometimes think medical culture gets it backwards. These artistic therapies and practices are seen as a way to fix people, rather than as a way to support kids, so they can be in the world as themselves.

BLOOM: That approach can also take all of the joy out of life. I remember when every interaction I had with my young son had an agenda—I was trying to get something out of him, rather than enjoying the moment. And if I wasn’t successful, I felt like a failure.

Julia Gray: There’s this pressure to always be better, but we don’t question what better is.

BLOOM: What if better is happier, and has nothing to do with abilities?

Julia Gray: What if better is chilling out in a bath?

BLOOM: You note in the paper that hospital clowns are often misunderstood. People think they provide simple laughs or positivity, when what they do is actually very sophisticated. You include an example of an interaction between a nine-year-old patient, Daniel, and Helen Donnelly, a co-author, who is a therapeutic clown at Holland Bloorview known as Dr. Flap.

Daniel, who uses a ventilator, accuses Dr. Flap of lying about the death of Jamie Burnett, who was a therapeutic clown at Holland Bloorview. He worked with Dr. Flap until he died of a brain tumour in 2011. Why did you choose that example?

Julia Gray: I wanted to show how the child drives the boat, and Helen really follows his lead. Helen doesn’t balk at what he’s putting forward, when he challenges her. It’s really brave for a child to challenge an adult, and accuse her of lying. She doesn’t try to take control by saying ‘No, no, I’m a serious adult. I know what’s best.’ She follows his play, and lets him lead. She makes herself very vulnerable. She recognizes the importance of not always talking and being clever and being in control.

BLOOM: You write about how fool-like characters historically played an important role in challenging the status quo. You also share examples of how scientists and research students, here and in other rehab facilities, reacted to learning you were researching clowns. They felt uncomfortable and hesitant. In fact, one colleague said she was afraid that if she encountered the clowns, they might make a fool of her. Can you explain?

Julia Gray: Our culture really values high intellect, certain kinds of expertise, and being in control, and the clowns do not offer that. They are constantly playing low status. They relish in being ridiculous and weak and failing all over the place.

That kind of exposes the ridiculousness of how seriously people take intellectual control. It has a place, and we have discovered all kinds of amazing things. But even in science, you need creativity, and there’s so much ‘not-knowing.’ It’s ironic that people get nervous around the uncertainty and not-knowing that the clowns bring.

BLOOM: That’s so interesting, because now I think about it, I remember a couple of times I was having a bad day, and I saw the clowns in the hall, and thought: ‘Oh no, I hope they don’t see me. What if they engage me, and I don’t know what to say? What if I don’t understand the characters they’re playing? What if I can’t say anything, or be cool?’

Julia Gray: People think they need to be funny, and that it’s about wit and intellect. It’s not. It’s about imaginative play, and you don’t have to know anything. You don’t have to know.

BLOOM: How does our focus on science and high intelligence and professional expertise potentially impede creativity and more flexible ways of thinking about disability?

Julia Gray: When there’s an emphasis on a particular kind of knowledge as being more valued, it delegitimizes another kind of knowledge, which comes from people’s experiences and feelings and emotions and senses. For example, clients are constantly being asked to articulate their goals in rehab, but only in certain ways. We say we’re being client-centred, and doing what the client wants. But we expect them to articulate those goals in a way that fits with a world where independence and productivity are valued.

BLOOM: There was an interesting quote related to that in your paper. 'Rehabilitation functions in tandem with efforts at home, school, and community to secure children’s futures as productive, contributing, autonomous and ‘normal’ adults.' I’ve always said that in mainstream childhood, parents don’t talk to their children about goals. It’s a clinical concept.

Julia Gray: I never sit down with my able-bodied kids and talk about what their goals are for their own bodies. I tell them to go outside and play. When a parent is trying to get a child to do things that will make them more 'productive,' it shapes the whole relationship. This opens up questions about what the purpose of rehab is? When we value independence and expertise over other ways of being, it influences our practice. Could we support kids to be who they are in a variety of ways?

BLOOM: There’s a brilliant line in your paper that I want to read. ‘There is little room in the serious scientific aspirations of contemporary rehabilitation practice and research for risking failure through creative experimentation, promoting pleasure, supporting alternative ways of being and doing, particularizing care, and/or thinking about people differently.’

I read that, and I thought: That’s why we don’t do more research on really complex populations. For example, we usually study youth with disabilities who are employable in conventional ways. Why don’t we research youth who will live unconventional futures, and who won't be able to do paid work? What do they do? What kind of a good life is possible for those people? I think we don’t go there because we don’t want to enter into a field where we don’t know the answers. We don’t know how things are going to look.

Julia Gray: And it probably won’t show what we consider productivity to be. We’re more comfortable celebrating certain kinds of successes, but what do we mean by success? We’re in a time where we have to account for every dollar spent, and if there’s money going to help kids be successful in particular ways, we have to account for that. If they’re successful in other ways, you can imagine people saying ‘But how is that going to help the economy?’ All of this is situated in our larger culture and its expectations. Those expectations really limit us, because we don’t critique what we even mean by success or improvement. Why do we need to improve?

BLOOM: Maybe a goal for a child is acceptance, so they feel good about themselves. Your paper resonated with me because I’ve felt a lot of discomfort with how we promote the academic exclusivity, or high intelligence, of our research work. How does that fit with our vision of inclusion?

Julia Gray: We are heavily academically inclined. We are measuring particular kinds of successes and experiences—largely through marks.

BLOOM: Yet some of our population, due to intellectual disability, can’t be successful in academics. You suggest that all rehab clinicians and researchers can enhance their practice by incorporating foolishness into it. What might that look like?

Julia Gray: My son used to take violin when he was 6, and one day, after about five sessions, he showed up and said ‘I don’t want to be here,’ even though he was the one who'd asked to take lessons. The teacher said ‘Okay, maybe we don’t need to practise bows and techniques. Why did you decide you wanted to take the violin?’ 

He said he thought it was a cool instrument. She said ‘Let’s take a look at the instrument,’ and that’s what they did for half an hour. They talked about the different parts of it, without playing it. If the teacher had had in her brain ‘I must teach technique and I have these goals,’ she would have pushed him away and he would have been even more annoyed. She knew that her relationship with him, and with music, was more important than holding the bow in the correct way.

BLOOM: One of the messages in your conclusion is that relationships, and activities that spark happiness, in the moment, with children, are as important as clinical outcomes.

Julia Gray: Therapy and physical function, and relief from pain, are incredibly important, and have a very important place. But it's also important to think about why we focus so much on improving in rehab? What are we improving? What is our understanding of betterment? Why do clinical outcomes take priority over a child being in a good way with a person in a space—being in a good relationship? Isn’t that, really, what life is all about?

BLOOM: What do you hope professionals take from your paper?

Julia Gray: I appreciate they’re in a tough position. We’re in a culture where the pressure is to be ‘better.’ That, according to the funding, is the point. They need to be able to show particular outcomes to justify their practice. Many feel very torn about existing within that structure that pushes them to practise in particular ways—ways that may sometimes be harmful. I don’t know what the answer is. I think we need to rethink what we value. What is valued as ‘better?’ What is valued as ‘improvement?’

BLOOM: What message do you hope parents take?

Julia Gray: To recognize that therapy, or betterment, or improvement goals or practices, can be totally overwhelming, and overtake your relationship with your child. Maybe there are ways to resist that by just being. And playing. Being silly, and sitting in the sun. Try to prioritize that, and remember that the parent and child being together is enough—as opposed to the parent being the fixer.

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Busy engineer finds happiness in children's hospital

By Louise Kinross

Emile Benyamin is an engineer who spends his days taking care of robots. His robots extract DNA from human blood and saliva, so it can be studied in research and clinical labs in hospitals. Emile travels across Canada to train scientists on the robots, and troubleshoot when there are problems.

But when BLOOM interviewed Emile, he had come in to Holland Bloorview on a Thursday night to volunteer with young children in our Ronald McDonald Playroom. “Emile is always down at the level of the kids, right in the thick of it all,” says Daniel Scott, who coordinates the playroom. “He’s very eager and hands-on with building or imaginative play.”

Emile's presence meant that the children’s parents could attend a talk about getting their kids, who have disabilities, involved in sports.

On Saturday mornings, Emile, whose three children are grown, drives in to the hospital from Richmond Hill to volunteer with inpatients with the most complex medical problems. Many, like Krystal above, use ventilators to breathe. Last Christmas Emile dressed up as Santa Claus on the unit. We spoke about why he’s so committed.

BLOOM: How did you hear about Holland Bloorview?

Emile Benyamin: I work in hospitals—even Sunnybrook is one of our customers. I love kids in general and I always wanted to come here to volunteer. I do a lot of work for SickKids hospital. When I applied to volunteer here, I had to get two references, and one was from a PhD I work with at SickKids. I’ve been working at SickKids for more than 10 years, and they know me well. When I joined here, I was so impressed with the hospital and the services for the children. That’s why I love it so much, and I wanted to give more.

BLOOM: What is a typical shift here like for you?

Emile Benyamin: My main shift is Saturday morning from 9:25 to 11:45 on the complex continuing care unit. We have a supervisor who runs a program—like art or cooking—and we usually work one on one with the children. Some are able to participate and others aren’t. But we still work with them, and hold their hands. Some of them we don’t know if they feel or hear us, while others hear and understand. If there isn’t a program, we may sit with a child at the bedside and read.

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

Emile Benyamin: My focus is on how to make the children happy, how to comfort them, and most importantly, making sure they are safe.

Even though they are not speaking they are communicating a lot. They may smile. When one child is not comfortable, she will shake her head. We know something is bothering her—maybe she needs [her airway] suctioned, or she wants us to change the song we’re playing.

BLOOM: So you learn how to read their communication. You’re a very busy person. How do you make time to volunteer here?

Emile Benyamin: I don’t go to movies. This work is fun for me. Put me somewhere where I can play with kids. It’s my relief. It takes away all of the stress and hassle of thinking about work and problems.

BLOOM: What’s the greatest joy?

Emile Benyamin: I love the kids so much that I find myself very happy being with them. Because the children are weak or sick, I feel good about doing something good for them. I'm always excited to work with them.

BLOOM: I know this place can be like a ghost town on the weekend. How do the children on the unit benefit from people like you coming in?

Emile Benyamin: In my opinion, we do a very good program, and the program drives us. I’m just a part of it.

BLOOM: How did you get so committed to volunteering in the first place?

Emile Benyamin: I volunteer with a seniors’ home close to my house in Richmond Hill. I’ve been doing that for 10 years. I have so many friends there. I had one client who was a very good friend of mine who passed away last year. She was 96 and she had a very sharp memory. She would ask me to sit, so she could tell me stories from when she was four years old. It’s heartbreaking sometimes when I go and I don’t find someone I’ve been seeing for years.

BLOOM: Has anything surprised you about your work at Holland Bloorview?

Emile Benyamin: Yes. The staff are very well trained and they respect the kids so much. They really care about them.

For example, sometimes we do reading, and one boy’s eyes are usually closed. I was taught to put the book mark exactly where I stop, so that when the next person goes to read, they know where to start. I see a lot of respect in this. I’m trying to learn from the staff.

BLOOM: You mentioned that most of the volunteers are students.

Emile Benyamin: Yes. I’m the only old guy there. I love to see people of a young age volunteering. The community needs it and the children need it. When we have a new, young volunteer, I keep an eye on them, too.

Emile and Emma at work making chocolate chip cookies that fill the room with fragrance.

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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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When parent hopes and rehab truths clash

By Louise Kinross

Sarah Davidson is an occupational therapist at Holland Bloorview. For 14 years she’s worked with children with complex medical needs who are hospitalized here after painful surgeries or life-changing illness or trauma. Of course, that also means working with their parents. She worked with my son when he was an inpatient. We talked about what it’s like to work with families who are under enormous emotional stress.

BLOOM: How did you get into this field?

Sarah Davidson: I always knew I wanted to work in healthcare. When I finished my undergrad degree, I took four years off and explored different professions. I looked at nursing, medicine and physio and occupational therapy, and OT was what worked out for me. At the time I worked at SickKids in an administrative role. I’ve always wanted to work with kids and once I finished school I waited to start my first job as an OT at Holland Bloorview so that I could find a job that fit with my interests. 

BLOOM: What is a typical day like now?

Sarah Davidson: A lot of the OTs start early. We’re here at 7:30 a.m. That way if a child is learning how to get dressed in a different way, we can assess them and try to help them become more independent. We see a lot of inpatients for active therapy, so we book sessions throughout the day. It could be to work on strengthening their arms, being able to sit while they play and finding ways for them to self-feed. Our main goal is to help kids to be as independent as they can be.

Equipment is a big part of what we do—trying out equipment to toilet, or to be able to have a shower or bath. We do a lot of wheelchair prescriptions and prepare families to go home. It could be talking to a family about how to transport their child with a ventilator.

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

Sarah Davidson: I think, like everyone who works here, we love coming and seeing the children and the families. I love seeing kids make changes and be able to go home with their families, because it’s difficult to be in hospital. I also really love learning about the experiences of the different families I work with and where they come from.

A huge part of my love of this place is the team I work with. I’m surrounded by people who support me and who I can learn from. They’re there when you're not sure what to do, or have a difficult situation. They bring treats. They make you laugh. They know about your life outside of Bloorview, so they know a lot about you as a professional and as a person.

BLOOM: What is the greatest challenge?

Sarah Davidson: One of the greatest challenges for me is balancing a family’s hope for their child’s recovery with my own understanding of what their recovery will look like. We may know, deep down in our hearts, that a child is not going to do some of the things they did before.

I’m thinking about what the family will need to do to get home. Will they need to change how their home is set up? Or move to a different house? Or make decisions about wheelchairs and equipment that they never anticipated their child needing?

We’re at a place where we’re ready to have these conversations, but families often aren’t ready.

The wheelchair conversation is the hardest. 

BLOOM: I know Barbara Gibson has done research about how our culture places so much value on walking.

Sarah Davidson: Sometimes Holland Bloorview is the parents’ first exposure to disability. Their child may have gone through something traumatic and lost a lot of their abilities. And the parents are still grieving and in crisis. Sometimes needing to make significant decisions that will impact their child’s future is just too much. 

BLOOM: It sounds like it’s an emotional process that you can’t rush. On the other hand, you must feel pressure to make sure they have what they need when they go home.

Sarah Davidson: The time they’re here isn’t indefinite, and it’s a window during which we can help support them. The fact that they will need to be discharged is a pressure.

What I’ve learned, after being here for so long, is that some families won’t be ready to make those big decisions while they’re inpatients, and that’s okay. Sometimes they need to go home and live their new reality first.

BLOOM: What kind of emotions come up for you around difficult conversations with families?

Sarah Davidson: Sometimes I get nervous. I can also feel sad when I put myself in the family’s situation—they have to think about things they never thought they would think about.

BLOOM: Do families sometimes lash out at you?

Sarah Davidson: When the family’s stress level is high, it can be directed onto staff. Parents may say hurtful things. I don’t think families realize that we take their situations home with us. I try not to take things personally, but it can be very difficult at times.

BLOOM: As a parent I didn’t think about how it felt to be on the staff side of hard conversations until I heard a therapist here describe it. Is there anything you do to support yourself?

Sarah Davidson: We use our team to help deliver a consistent message. That may be during a family team meeting, or by pulling together a smaller team. So the physio and I may meet with the family together. If the physio has been working on walking, having us both there to make suggestions is helpful.

BLOOM: What do you do to manage your own stress?

Sarah Davidson: I do my best to take my lunches and take advantage of what’s offered at Holland Bloorview. I go swimming at lunch or participate in the weekly mindfulness session. I also participated in the mindful self-compassion group last fall. I go for a walk or come and read in the library. It’s easy to get stuck at your desk working through lunch but when I do, I’m exhausted at the end of the day. Then I’m not really there for my own family.

BLOOM: What qualities are important in your role?

Sarah Davidson: Being able to listen to what families want and need. Even if you’ve done something a few times with clients with the same diagnosis, every family needs something different. Being patient, and realizing you will have to say the information over and over again, in different ways, for families to hear and understand it. Being able to have empathy and compassion for what they’re going through.

BLOOM: What about creativity?

Sarah Davidson: That goes with knowing every family is different. Sometimes you’ll plan for a session but it doesn’t go as you thought it would, and you need to think on the spot to try something different. For the older kids, you can negotiate things, because they understand that you’re trying to help them. But for the younger kids, you have to make what they need to do appear fun.

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

Sarah Davidson: I think better access to services and resources when families leave here. Our families are fearful and worried about finding community nursing to support kids who have tracheotomies and ventilators. Respite services are limited and families are burning out. Even in a big city like Toronto, the home nursing isn’t there to support families.

Funding is another big area of need. A lot of the equipment is very expensive. We also need better access to therapy services in the community. There’s some, but not always the frequency that is needed.

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

Sarah Davidson: It’s okay not to know everything. You’ll never know everything, and you’ll continue to learn from your colleagues and from every family you work with. When we’re honest with families that we don’t know everything—that we’re not sure about what the best solution is—it makes it easier to partner with them and get their input.

BLOOM: Because we can’t necessarily ‘solve’ things in a traditional sense for many of the kids and families we work with.

Sarah Davidson: Sometimes you can’t change what is. Sometimes you can’t make it better.

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

Sarah Davidson: Recognizing that staff are under an incredible amount of stress. They’re dealing with an ever-increasing complexity of clients and families, and it’s important to offer supports.

For example, I felt valued that we were allowed to take the eight-week mindful self-compassion course. It was a significant amount of time out of our work week that enabled me to connect with clinicians, not just in my program, but across the organization. I got to hear their stories and learn how to better take care of myself.

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While in hospital, Fiaz creates bright, bold, energetic art

By Louise Kinross

Fiaz Rahman has had a rough six months. The 18-year-old developed a pressure injury in August that prevented him from going to school for months. Just before Christmas he was hospitalized at Holland Bloorview. "More than physically, it was emotionally painful, because I wasn't in control of it," he says. "I didn't intend for it to happen. It ruined my lifestyle. I couldn't enjoy my summer or go to school. It was difficult for my parents, and I couldn't hang out with friends. I felt trapped, isolated and lonely." While in hospital, Fiaz has pursued his love of art, and he has dozens of bright, bold, energetic pieces on display in his room. We spoke about his stay here.

BLOOM: How has art helped you cope while in hospital?

Fiaz Rahman: I've always loved art. I love media and I'm a poet. I love movies and colours and imagination. They're all a big part of my inspiration. Doing art here showed me a lot of things I didn't know I had inside me. It feels like I'm creating content for the world. You know how artists leave their mark and their legacy, and make a name for themselves?

I like colours—constructing colours, colliding colours, obstructing colours. I want to create art as a business in the future, as a career. I want to go to the Ontario College of Art and Design. I like trying new things, and seeing what works, and what doesn't work, for me. I like making something better.

BLOOM: Where did you do your art while here?

Fiaz Rahman: I did some of it in recreation and some of it by myself in my room.

BLOOM: I noticed you have some art gallery tickets on your windowsill.

Fiaz Rahman: Dr. Flap, the clown, printed those up. I've tried to invite everyone and anyone.

BLOOM: What has been the hardest part of being in hospital?

Fiaz Rahman: I love this place. It's an amazing place. People need each other and we need to take care of each other. Kindness goes a long way. I've had a lot of support and I'm happy mentally and emotionally here. I still have my pressure ulcer, but it's healing and I'm so grateful. It's not as deep as it was. 

BLOOM: Do you have any advice for our staff?

Fiaz Rahman: It's important for staff to understand where a child is coming from. Don't judge them. Understand and have empathy for them. You need to connect to the kids.

BLOOM: What advice would you give a child or teen who was coming to stay here?

Fiaz Rahman: It's such a great facility. Speak to people here, and let them help you. Create new friends. Surround yourself with a positive environment. Try to find out what you're good at and explore your passions. It's going to be tough, so you have to be strong and patient.

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'I like a nurse who's caring, sometimes funny, always positive'

By Louise Kinross

Justin Chau is an 11-year-old inpatient at Holland Bloorview. He's writing a story about his life following a surgery to remove a brain tumour. He loves orange, because it’s the colour of flames, drawing abstract art and camping. We spoke about his story and experiences in hospital.

BLOOM: You wrote that when you woke up after your 10-hour surgery, everything felt fake. What do you mean?

Justin Chau: I wasn’t aware of where I was, because it didn’t feel real. I wasn’t aware of where I was in space. I felt different in my body. I didn’t feel like my normal self. I felt like it was all a dream in my head.

BLOOM: In your story, you say you’ve been able to sleep better since you came to Holland Bloorview. Is that because it’s quieter here?

Justin Chau: No. It’s because I do lots of therapy and talk to lots of people and I’ve made friends. I’m not on any medication, I can walk and do stuff better, and I’m independent in my room. Because I’ve been here for longer, I get to know people better. I feel like I’m not alone, because everyone is supporting me.

BLOOM: You wrote about one friend you made here, who was a baby.

Justin Chau: Yes. My mom made friends with his mom, and one day I got to babysit him for a couple of minutes in my room, while our moms went to do something. He would laugh at me while I do stuff. After that his mom trusted me, so I continued to babysit him. They call us soul brothers, because we both have a scar on the same side of our head. When it was his last night here, I decided to go and play with him. My mom and his mom exchanged numbers so we can talk to each other and meet up in the summer. This is just the beginning of our friendship.

BLOOM: You mention a big list of nurses that you like, and say they’ve inspired you to consider nursing as a career. What qualities are important in a nurse?

Justin Chau: I think a nurse that always watches over you and that comes in at the right time to check if you need help. They should know my feeding schedule. They should teach me and guide me. Since I want to be a nurse, they taught me to do my own feeds.

I like a nurse who's caring, sometimes funny, always positive.

BLOOM: Why did you decide to write a story about your experiences?

Justin Chau: My social worker, Anna Marie, asked me if I wanted to create a timeline of how far I’ve come, and the progress I’ve made. I was like ‘That’s a good idea, can I write a story?’ It’s important because I want to know how much I’ve been improving, and how quickly and well my body has recovered.

BLOOM: Is there anything we can do better here at Holland Bloorview?

Justin Chau: I like almost everything here. I think the therapists do a really good job of pushing kids to work harder, so that they improve, but not so hard that we’re exhausted. They push us so that we feel confident and strong.

I think this hospital is one of the best that I’ve seen. They have recreation in case you’re bored, and there are lots of things to do. You get a nice room with a TV, and the nurses are always caring for you. And you can go to school here. I have fun going to school.

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With Aicam on the case, hospitalized kids have fun

By Louise Kinross

Aicam Chuong has been a nurse at Holland Bloorview for over 30 years—first as a student, then working with children hospitalized here with complex medical conditions and acquired brain injury related to trauma or illness. She’s seen the hospital through four name changes and two sites. A patient recently dubbed her a vampire for the precision with which she always draws blood on the first poke.

BLOOM: How did you get into the field?

Aicam Chuong: When I was in high school I volunteered in a nursing home feeding the old folks. One day I was there when a code blue was called on the unit, and I saw doctors and nurses come, and each played a different role. One was starting the IV, one was documenting what was going on, one was giving medication orders. I thought ‘Wow, this is really interesting. I saw the dedication, and I thought maybe I want to do that. I went through a four-year nursing program in Nova Scotia and then moved to Toronto with my family.

BLOOM: Why were you interested in children and rehab?

Aicam Chuong: Children are fun. They recover more quickly than adults and they also open up and tell you what’s going on. A child may draw a picture about being sick and write ‘I want my mommy or daddy here,’ and sometimes parents have to work. I remember calling one mother and telling her: ‘I’ve told your son that you’re coming back after lunch, so you better come back, because I have to tell him the truth.’ I love working with kids. You can console them, you can give them a hug, you can carry them around. You can play games with them to make them happy.

BLOOM: What is a typical day like on the brain injury unit?

Aicam Chuong: I get my assignment of two to four patients and check in to read the report on how their night went. Then I go into Meditech and look at the care plan so I know how to provide care and get the medications. Some of the patients need extra tests or blood work. The kids are here for therapy, so it’s very important that they have breakfast and be ready for therapy on time. Time management is very important, and I want to make sure all of my patients get my attention.

One of the patients said she was going to give me a name, and the name was vampire, because while some nurses didn’t get her blood with many pokes, I always got it with the first poke. We have to have fun sometimes with what we do!

BLOOM: I think vampire is a great name to recognize your expertise with blood draws.

Aicam Chuong: Something that helps us when we have to do invasive procedures is to work with our therapeutic clowns. They can come and distract the patient by doing something funny or singing a song. Our child-life specialists also help prepare our patients through play. That’s how our team works.

BLOOM: What is the greatest joy of your work?

Aicam Chuong: I’m happy to be here and I’m happy I can help the patient and the family. There’s one joyous thing in particular I remember. One of the patients had a head injury and was staying with us from up north. One day he came back from an appointment at SickKids and he and his mother were very upset and emotional. They had been told he probably wouldn’t regain his speech.

But guess what? This patient comes to me one day and says ‘I want to learn Chinese and I want to learn Cantonese.’ I said ‘Okay, let’s start today, right now. I will take my break time—an hour a day—and I’m going to do this for you.’ We started with simple vocabulary and he learned one sentence each day. By the time he left, he could have a full conversation in Cantonese.

One day in the parking lot a Chinese couple was having trouble with paying at the gate and he started talking Chinese with them and they said ‘You speak Chinese, but you’re Caucasian?’ He came back and told me ‘Guess what I just did?’ I said ‘I hope something good.’ He told me about helping the couple outside and it was amazing. His speaking tone was so accurate. His family was so appreciative and always come back to see us when they’re here for appointments.

BLOOM: Was the patient able to speak again in English?

Aicam Chuong: Yes. That was a very joyous story. He gained back his language and he also learned Cantonese.

BLOOM: What is the greatest challenge?

Aicam Chuong: When families come in after their child has had a sudden trauma—like a car accident—or a tumour has been diagnosed. They don’t know what’s going on, or what will happen. The challenge as a nurse is to be present for them, to do active listening and to figure out what they most need help with right now.

BLOOM: I assume some families are very distraught and it must be hard to be on the receiving end of that pain.

Aicam Chuong: We are here for the family. When I’m here, it’s not just my body, but my mind and my heart. The heart is very important.

BLOOM: What about when you’re incredibly busy?

Aicam Chuong: We make time. I would rather have a 10-minute break than an hour if that can help the family. We tell them it’s a partnership. I may suggest spending an hour or two with their son or daughter so they can go have a shower or go down to Tim Horton’s for a coffee.

BLOOM: What emotions come with the job?

Aicam Chuong: Joy, caring, understanding. Sometimes I feel helpless if there’s something we can't do and we have to transfer the patient back to SickKids or another hospital. But when I don’t have the solution to something, I go to my manager and my colleagues for help. We are a team and we stick together.

BLOOM: Do you do anything to manage stress?

Aicam Chuong: I exercise. I go swimming five to six days a week in the community. I do Aquafit and then I go sit in the sauna and get all of the sweat out. If I work a day shift, I swim in the evening. If I work an evening shift I swim in the day. It makes a big difference. I also listen to classical Chinese music. It relaxes my mind.

BLOOM: You’ve had such a long career here. What keeps you coming back?

Aicam Chuong: We can make a big difference in the kids’ lives and that’s what makes me stay. It’s very rewarding.

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

Aicam Chuong: We see so many kids who come to us after trauma. I think we need better psychological support on the unit for patients and their families. Children and parents need someone to spend more time talking with them. If a parent comes out of a meeting where the news was not good, they cry, and they need to talk about it. It’s hard to do that and devote equal time to all of your patients.

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When Bay Luu isn't caring for her grandson, she's exercising

By Louise Kinross

On Friday I looked out my window at Holland Bloorview and saw Bay Luu, 73, pushing her grandson Nicholas, 17, in a wheelchair. A little later I glanced out and Bay was on her own, doing an aerobic step routine on the basketball court—minus the step. After that she did yoga poses and stretches, including sitting on the tarmac with her legs stretched out like a ballerina, and her head, chest and arms touching the ground. Bay has been sleeping here at Holland Bloorview with her grandson Nicholas, who has a brain anomaly called pachygyria, and is recovering from orthopedic surgery. I wanted to find out how Bay incorporates exercise into her days at the hospital, and how it helps her care for her grandson.

While talking to her, I learned Bay and her family spent a perilous 11 days in a fishing boat sailing from Saigon to Malaysia in 1976, after being stripped of their house, store and belongings during the 1975 Communist take-over of South Vietnam. Prior to their escape, Bay's husband Thanh was sent to a remote labour camp while she and her children lived for months with other families in a church and school. "If the Communists had caught us I would have pushed the children into the sea, then jumped myself," Bay told The Ottawa Citizen in a story about her family in 1978 (see photo at the bottom). The year before they arrived in Ottawa as refugees.

BLOOM: Tell us a bit about Nicholas?

Bay Luu: He doesn’t talk, but he walks a little. He understands everything. He will shake or nod his head if you ask him a question, or use sign language or facial expressions. At home he goes to school. I live with my daughter Hanh’s family, so that his parents can go to work during the day. Nicholas loves Thomas the Train. His dad has bought him the whole set. He likes to go to the computer and search for information on each of the characters. When he was diagnosed, the doctor said he was one in a million.

BLOOM: How long have you been living with Nicholas’s family?

Bay Luu: It will be 18 years in January. After we found out Nicholas would have special needs, we sold our house in Ottawa and I came here to help. My husband stayed near Perth, because he doesn’t like the city.

BLOOM: What is your routine at home?

Bay Luu: In the morning I wake Nicholas up at 6 o’clock and help him go to the washroom and brush his teeth and we go down for breakfast. I pack him a lunch. He likes little bits of French toast he can eat by himself, and two yogurt bottles. In the morning I make him oatmeal. At 7:30 the bus comes to pick him up. Then I go for a walk. I come back at around 12 or 1 and cook something. I cook his dinner for a long time so it’s chunky, but very soft. I chop the carrots and the chicken small, and cook them with rice and chicken broth. He comes home at 3:15. At 3:30 he does half an hour of exercise on the elliptical in our basement. That’s when I do my stretches. Then he has oatmeal and a bath and his dinner. We stretch his legs in braces for about an hour-and-a-half in the evening. He goes to sleep at 8:30 when he’s at school. He sleeps with me. 

BLOOM: Does he sleep through the night?

Bay Luu: Yes, he sleeps well.

BLOOM: I know children with his condition sometimes have seizures.

Bay Luu: We are very lucky and he’s had no seizures.

BLOOM: What is your exercise routine at Holland Bloorview?

Bay Luu: I get Nicholas ready in the morning and he goes to recreation at about 9:30. Then I go out to exercise. First I go upstairs to the 6th floor and I walk down to Level zero and up to 6 again, and then I go outside. I do step, stretches and yoga on the basketball court. I have about an hour and a half to exercise, so after that I may go for a walk in the ravine or walk to Metro. At 11:30 I get Nicholas and help him with his lunch. Then he relaxes on his bed with the TV or iPad. In the evening I do the stairs again. I walk up to the 6th floor, then down to level zero, and back to the third floor.

BLOOM: Why is your exercise important?

Bay Luu: I have to move, I can’t sit. I feel better and my knees are better. I used to take painkillers for arthritis, but when I exercise I don’t need to. I’m happier when I exercise. If I don’t walk for two days I feel sad. At home I walk five days a week. I also eat lots of vegetables and fruit and drink two litres of water every day. It helps me stay well and healthy, so I don’t have to take pills or be in the hospital. At my medical checkup this year I didn’t have any problems.

BLOOM: Did you have experience with disability before your grandson was born?

Bay Luu: No, no experience. No one taught me how to take care of Nicholas—by living with him you figure it out. I felt very sad, but if God gives this to you, we have to accept it. It doesn’t help to be sad or angry. I love Nicholas lots and that makes me happy.

BLOOM: How has this experience changed you?

Bay Luu: Before Nicholas was born I was busy at work. I worked for 23 years at a fast-food submarine place. Now my children are grown up and they’re okay, so I’m happy and thank God. I try to help the kids with special needs more than before. If I can help, I want to help.

That’s why I don’t go on vacation by myself. Last year I went to Singapore for one-and-a-half months and brought Nicholas.

BLOOM: By yourself?

Bay Luu: Yes. We stayed with his dad’s family who can help us. A few years ago I went to Vietnam for two months and brought Nicholas. I have a family in Vietnam. It’s hard, but I can’t leave him. I would worry about how he was and whether he’s eating the right food. I will live with him till the last day of my life.

Below Bay Luu (centre) with her husband and three of their children, who arrived as refugees in Ottawa in 1976. The photo is from a 1978 article in The Ottawa Citizen. It notes that at the time of their escape from South Vietnam, Bay's fourth child, a 20-month-old son, had a fever and was left in the care of his grandparents.

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With a little help from my friends

By Louise Kinross

Living in hospital for months of rehab after surgery can be hard for a kid and their parents.

Kim Hoben (above left) of Whitby says the kindness of neighbours, friends and family has made her stay at Holland Bloorview with daughter Riley, 8 (right), so much brighter. Riley, who has cerebral palsy, had surgery on her hips, femur and hamstrings and has been here for three weeks.

It started when Kim's neighbours collected hundreds of dollars from people in the community and her son's hockey team to cover gas and parking costs for the trips back and forth from the hospital. 

Then the family received a box with a package for Riley to open every single day she's in hospital. The bags are dated, and a great way to start the morning, Kim says. "The presents are crayons, a pencil case, books, a blanket, slippers, nail polish, and a brush. Things that keep her busy and are so special and thoughtful."

The first weekend the family came home, they were met by friends lining the driveway with balloons and a 'Welcome home girls!' sign. 

Help has also come in the way of friends offering to stay overnight at hospital with Riley, or spend time with her during the day. "On Monday night a neighbour slept over and stayed all day Tuesday. She took a vacation day to do it. My son was with my sister, so my husband and I went out to a restaurant. A teacher came one day so I could go home and watch my son play baseball."

Kim keeps friends updated on Riley's progress on Facebook and in a messenger group. 

"The days are long here, and it's hard to be here 24-7," Kim says. "The support we've had is incredible."

Kim notes that her community has come up with specific ways to help, without the family asking for it.

Parents of children with disabilities often find that people say "Call me if there's something I can do," but don't take action.

When neighbours visit, Kim says, they bring food and snacks.

Riley says her favourite activities at Holland Bloorview are "physio and rec." 

"The recreation programs here are amazing," Kim says. "Three times a day, they may do crafts, go to the gym, bake or play games. Riley likes to go on her own and do her thing, so it's also a break for me. Riley loves the student volunteers who work with the program."

As of yesterday, Riley walked with a cane for the first time. "Now she's swimming, which is great for her legs," Kim says. "She's like a fish in there."

Want to support a child and parent in hospital? Consider all of the practical ways the Hoben family has received support and take action!

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We celebrate 'a smile, a hand reaching out to say more'

By Louise Kinross

Shawna Perkins loves to play. The art therapist spends her days with babies and young children in Holland Bloorview’s therapeutic playroom. Her little patients may be here for rehab following a painful surgery, to recover from a traumatic brain injury, or because their parents need to learn how to care for their child's ventilator at home. The playroom is a happy place, full of bright toys, comfy mats and art supplies; tables for water play or play dough; and a ball pit and child-sized kitchen. Warm sun streams in through a floor-to-ceiling window. Shawna coordinates the playroom with three therapeutic recreation assistants and up to 70 volunteers a week. No matter what the day, the playroom is a welcome respite from hospital life.

BLOOM: What is the purpose of the therapeutic playroom?

Shawna Perkins: It’s to provide fun activities in a safe, play-based environment, to help kids cope with hospitalization, and to offer parents breaks as needed. Parents may need to get a meal, take a rest or visit with a social worker, knowing that their child is safe and engaged and happy. We’re also part of the interdisciplinary team working toward a child’s rehab goals, but we do it through play.

BLOOM: How do you help kids cope with being in hospital?

Shawna Perkins: In the hospital, children don’t have the same choices they have at home. They have to do things they don't want to do. In the playroom, we want to give kids a space they feel is their own. We encourage them to make choices here, and try to give them a sense of control and mastery in what they do.

BLOOM: How did you get into this field?

Shawna Perkins: I did my master’s in Creative Art Therapies at Concordia University, and my background is as an art therapist. While at school I had the experience of being the inclusion coordinator for the town of Newmarket, overseeing all of the summer camps in the town. When I came back from Montreal I was looking for a place to work where I would be a member of a team, and where I could continue my education. I got my first position as the coordinator of our Ronald McDonald Playroom. I did that for two years, and I’ve been the coordinator of our therapeutic playroom for eight years.

BLOOM: What’s the greatest challenge?

Shawna Perkins: We see families who have come through many difficult situations and who may be experiencing a sense of loss or grief. If their child has lost mobility, or the way they communicate has changed, parents may be unsure about how to engage their child in play again.

BLOOM: I’m sure some parents must feel in shock.

Shawna Perkins: They’re often dealing with a lot of trauma. We work really closely with their kids to look for positive responses to what we’re doing, and to foster their participation and instill hope. Even the smallest progression—a smile, a hand reaching out to say more, is something we celebrate together.

Parents are trying to balance many needs with other family members at home and with their child here.

When we invite them into the playroom, we’ll ask questions about what their child has enjoyed in the past, so that we can build on those experiences here. Over time children get to know us and feel safe and comfortable, and that’s when we see them blossom.

BLOOM: Do you ever find parents are so focused on their child’s rehab goals that it’s hard for them to just enjoy their child?

Shawna Perkins: They do have so many goals and so much ‘homework,’ and we’d like them to know they can leave those things behind in the playroom. We recently started a Baby and Me group with Andrea Lamont in music therapy. The intention of that group is to provide an opportunity for parent and child to enjoy music together, create a special work of art to celebrate the child, and to shift the focus to their relationship and bonding.

BLOOM: What kind of change do you see in kids?

Shawna Perkins: When kids first come in to the playroom, they may be overwhelmed, and begin pulling everything off the shelf. Our program provides structure and as they learn the routine, they become able to participate in small group activities with children of the same age.

Kids may come in with very limited communication but, over time, they begin expressing themselves through play, by making choices and in their sense of humour. They may enjoy playing silly games and we find out what makes them belly laugh. Or who they are comes out in the art work they make.

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

Shawna Perkins: Every child is motivated in some way to play, and can be engaged creatively, and that’s an amazing thing to get to do when you come to work every day.

BLOOM: What drew you to art therapy?

Shawna Perkins: When I was younger I had an opportunity to work at a camp for girls, and I saw the potential to have a positive impact on other people. I’ve always been able to express myself through the arts, and now that I work with the therapeutic recreation team, I see how important it is for children to have a sense of belonging and a sense of community. I think all of those experiences impacted me.

BLOOM: How do you manage the emotions that come with this work?

Shawna Perkins: As a staff member, we care deeply about our families. We feel their emotions and we feel for them. The work we do can be difficult, and it’s important that staff check in on each other to debrief, to talk about tough situations, and also, to celebrate the joys of our jobs as well. My office is a tight space that I share with five other people, and we become close quickly. We often share similar case loads and similar feelings.

On my second mat leave I started practising mindfulness, and I was so pleased to find out that Anna Marie Batelaan was offering a mindfulness meditation group for staff on Tuesdays at lunch. That gives me an opportunity once a week in the middle of the day to check in with myself and with other colleagues, and to reflect on where I am. How am I doing, what am I noticing? Maybe I can shift things a bit to ground myself better, so I’m better equipped to return to work.

BLOOM: What kind of people volunteer in the playroom?

Shawna Perkins: Everyone from high school and university students to retired people in their 70s. Some hope to develop skills to help them in particular career paths, and others just like playing with the little guys. We have people who work full-time and take time out of their work week to come. Our volunteers are amazing. We have multiple people come in every day, seven days a week, and about 150 in total.

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

Shawna Perkins: I’d like to see us better connect the system, as we talk about in our strategic plan. For example, I refer families to infant development services when they go home, and in the GTA it’s easy to connect them, but the services run differently in each region of Ontario.

BLOOM: So how you access these services isn’t equitable, depending on where you live?

Shawna Perkins: Yes. As a health-care provider trying to do a good job, it’s challenging. Right now I’m doing some leg work to find out where the programs are in different communities, how they take referrals and what the wait lists are like.

BLOOM: What do you enjoy about working with young children?

Shawna Perkins: I like talking to families about what their child can do when they go home. We try to expose kids throughout the week to a range of activities, so parents can identify what their child’s interests are. For some families, the way their child plays will look different when they go home.

They have questions: What supports will I need? Is funding available? Can I stay with my child in a program if they need support? Are there programs for children with disabilities? If my child goes to an integrated program, will my child be the only one with a disability? These first steps are so important for a child to be set up for a sense of belonging at home and in their community.

BLOOM: How have you changed as a result of your work here?

Shawna Perkins: I’m a bigger advocate of inclusion and accessibility outside of work. It’s important that I pass those lessons I’ve learned to my kids, and I want inclusion to be a part of their world as they grow up.

Working here has given me perspective on what really matters. We do come across a lot of suffering, and it puts things in perspective in terms of what’s important in life. We also see a lot of resiliency in the children and families we work with, and a lot of hope. I think we need to acknowledge that there’s a lot of good in this world, and to honour our families.

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Hardships, silver linings and me: A diary of rehab

By Alivia Osland

I’ve been in the hospital for almost three months because I’ve been diagnosed with Guillain Barré Syndrome.

The lower half of my body was paralyzed (my whole body could have been paralyzed, so I’m considered lucky). I had problems with my breathing and swallowing and what wasn’t paralyzed was numb and tingly and extremely weak. I also had an ongoing headache for the first month.

At the beginning of this journey I was miserable and hurting—mentally and physically—and dazed by just how surreal this really was. 

After a few weeks of a little progress, things went downhill. My breathing was affected. At that point I was throwing up quite frequently and they thought I was aspirating some of the vomit. Then my oxygen levels went down to 30 per cent (they’re supposed to always be above 90 per cent) and the doctors thought it would be best if I went to the pediatric intensive care unit.

Once I got into the PICU everything was a blur. Shelly—my nurse—said she was giving me a nasal feeding tube right away. That crushed me. For a couple of weeks, doctors had said it was a possibility, but I never thought it would actually happen. So the feeding tube went in and the oxygen prongs were next. Other than the feeding tube, the oxygen prongs were the hardest to get used to. I didn’t think they were helping me. It felt like it was harder to breathe than before. I despised them.

The first three or four days in the PICU were the worst. I was throwing up what felt like every five seconds and it took hours to get my breath back. My throat felt incredibly raw because of the constant throwing up, the feeding tube and the continuous high-flowing oxygen going through it.

That was when I wanted to go home the most. I was getting an artery line, I couldn’t eat or drink on my own, I couldn’t breathe on my own, I couldn’t go to the bathroom on my own (I HATED the bedpan) and I couldn’t move my legs at all.

It was nuts that I was actually immobile and couldn’t do anything. I didn’t know if it was going to get worse than it already was. Would I need a catheter? A respirator? Would it get that bad?

Initially I would wake up and forget about everything, for a minute. Then when I remembered, my mood just fell and it was awful. Eventually I got used to it and didn’t forget anymore.

It felt like it would never get better, but it did. They took the artery line out and I was in a bicycle study. What is a bicycle study, you might ask? It’s a study where they bring a specialized bike to the end of your bed and they strap your legs in, extremely safely. Then the bike would start moving on its own with the choice of higher speed or higher resistance (if you were peddling).

The idea behind the study was that if you got some exercise while you were sick, you could recover and get stronger faster. I think it worked.

I was only in the PICU for 10 days and then I was back on the unit. I left the oxygen prongs behind and felt a lot better.

Soon after I got comfortable in my new room, my occupational therapist Kate came into my room to do some feeding tests. Purees went well but liquids not so much. I coughed quite a bit on the milk and I was really disappointed. I had my appetite and thirst back, but was still unable to please my cravings.

Next I went to the therapy room to try standing, after countless sessions of sitting at the side of the bed. I was (figuratively) jumping for joy! I got wheeled up to the parallel bars and had Jill (physiotherapist) on my right, Kate on my left and Barb (physiotherapist) in front of me. We were going for it! With both my hands on the armrests of my wheelchair I pushed myself up. I was standing for the first time in weeks! I was extremely proud of myself.

We did that for the next few days and it was getting a lot easier. I wanted to try walking. Jill and Barb thought it was a good idea so we gave it a shot. I stood up, steadied myself and then took a step and then another and then another. I was walking! Holy moly, I was actually walking. I sat back down filled with optimism for the next few weeks.

As time progressed, so did I. Now I could walk from one side of the room to the other and I could also do a transfer from my wheelchair to my bed with a walker. No one could believe the progress I was making (not even me). Things were looking up! I thought I must be going home soon. But I thought wrong.

One morning Jill came into my room for physiotherapy and I asked her what I would have to do in order to go home. That’s when she brought up Holland Bloorview in Toronto. I was confused. I thought I’ve come a long way, why would I have to go to another hospital? She went on about how at Bloorview they’re more focused on rehab than acute care. I was understanding more now, but how much longer would I be hospitalized?

Jill told me it could vary between three weeks and two months. Seriously? Another two months? I held in my tears as best as I could. Then my dad came in with my speech language pathologist Sara and Jill filled them in on our conversation. They all looked at me with pitiful looks and I couldn’t hold it in anymore. The tears streamed down my face. I couldn’t control them. I just wanted to go home. I couldn’t handle another two months. But soon enough it was moving day.

On August 23, an ambulance took me to Holland Bloorview. I have to admit, it was pretty cool riding in an ambulance. It didn’t take long and soon we were there. Holland Bloorview was very different from McMaster Children's Hospital, like wow!

At Bloorview you have a schedule for the week. There’s a Bloorview school, a lounge where everyone eats, and you can go home for weekends. There are family team meetings where you, your family, your social worker and your team of therapists all have a meeting and discuss your goals and progress. During your first team meeting (seven to 10 days after your arrival) they will give you an estimated discharge date.

My first day was busy, busy, busy. I met loads of new people. It was a little overwhelming, to be frank. I met all my therapists, my social worker and my head nurse. I was exhausted and in desperate need of a nap by the end of it.

During the next few weeks, I was progressing like crazy. I came to Bloorview being able to stand on my own for 20 seconds, tops, and now I was using a walker to get around. This was so exciting!

My physiotherapist Alanna was working me really hard! Which was great! Soon she was leaving to get married so I was getting a new physiotherapist for the time being. I wanted to surprise Alanna when she came back, maybe even being able to walk without any equipment? Hopefully.

When school started I was alone most of the time because my parents had commitments they needed to fulfill. The nurses kept bugging me about eating in the lounge or going to recreational therapy. I really didn’t want to. Socializing wasn’t my strong suit and I was incredibly shy. They repeatedly said that socializing is therapy too, but I was socializing with the nurses and my family. So eventually they got off my back.

Speaking of school, I’m in a Grade 6 to 8 class and my teacher’s name is Anne-Marie and the educational assistant is Judy. 

When I first started, I hated it, to be completely honest.

My first thought was: “How could school get any worse? Have it in a hospital!” I wanted to go to MY school, where all my friends were. But I sucked it up and it wasn’t all that bad. Anne-Marie and Judy were awesome and I pretty much did my own thing most of the time. It was going pretty well!

With my new physiotherapist Andrea we were doing all sorts of crazy things like jumping, running and walking along a balance beam while squatting and reaching. It was nuts! I really enjoyed it and I was getting pretty good at it too!

We also went on daily walks with activator poles. Walking with the poles was getting a lot easier, so Andrea did the six-minute walk test on me. The test determines whether you need a walker anymore by testing if you can walk 500 metres in six minutes. I went 523 metres!

The next day I was independently walking around the hospital. I could LITERALLY jump for joy now and you bet I did!

Alanna was back and boy was she happy! I gave her an update on everything I could do. I could stand on one leg for a minute, I could jump, I could run and so much more! She was blown away! That day I climbed four flights of stairs, jumped rope, and did 'suicides' and basketball drills all while running! I was having a great day! I could run, I was feeling optimistic about discharge and they were weaning me off my pain medication. I was starting to see the light at the end of the tunnel.

Today was the day of my family team meeting and I was really hoping I'd be able to go home sooner than anticipated. I crossed my fingers. Once we were all in the meeting room (Alanna, Sarah—occupational therapist, Patrick—my social worker, Katherine—my child life specialist, Anne-Marie and my family), Patrick told us that my school was on the telephone line and so was the outpatient therapy clinic I would be attending at Kids Ability.

The meeting started off with how I’m doing medically (which was fantastic), then we began to discuss my physical capability. Alanna said I was doing awesome and that there were still some minor things to work on but overall I was doing great. Next, Sarah said that my strength is definitely coming back and that I won’t need any outpatient occupational therapy (yay!).

Then we got onto the topic of how I was coping with my hospitalization. Everyone said I was coping fantastically. I tried really hard to focus on the positives, so I’m glad it was noticed.

Soon after, my vice principal mentioned some strings they could pull to make the transition back to school easier for me. Things like having a buddy walk with me to class and carry my books, leaving class early so the hallway isn’t so busy, having a chromebook if writing was too tiring and being able to have a rest if needed.

I didn’t think all that was really necessary, and neither did Alanna or Sarah. So we ended up just going with the buddy, as a precaution. Finally, we came to the discharge aspect of the meeting. Drumroll please… I’m going home a week early!

Out of nowhere the waterworks came gushing out. They were out of control. It just dawned on me that I was going home NEXT week.

That’s so soon. I just started connecting with some of the people here, like my roommate and other clients. I just got comfortable with eating at the lounge, going to recreational therapy and socializing. But now I’m leaving.

Two days before my discharge date I realized that I didn’t really want to leave. I was used to everything here at Bloorview and I didn’t want to have to deal with such a drastic change all over again. Plus, I made friends that I may never see again and it’s hard to be okay with that. I’m hoping we stay connected even though we’re so far away.

But I need to remember that leaving is good. It means I got through the most difficult thing I’ve ever had to deal with and I’m proud of myself. I also can’t forget about my friends back home, I honestly cannot wait to see them.

This journey sure has been difficult, but there are positives. I’ve made friends I would have never gotten the chance to meet otherwise and I’m coming out of it with a whole new perspective on life. I’m so much more thankful for the little things now. 

To other kids going through something similar, I would say keep your head up and focus on the positives! That’s what saved me from falling into a pit of sadness. Sure, I was sad, but it could have been worse. It may seem like it doesn’t ever get better, but it does. It always does. It can really suck, but when you’re better you feel like SUPERWOMAN. Just about walking or running semi-fast or maybe even pushing yourself in the wheelchair. Try not to let it get you completely down because there really are some positives about the whole situation. I made friends that I still talk to everyday and the nurses can be GREAT. They’re just great people. So find the positives in a really big negative. 

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