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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A brother unites a family and inspires research

By Louise Kinross

Five siblings have created research scholarships in occupational science and therapy at the University of Toronto in honour of their brother Peter Rappolt. Peter (bottom centre), the youngest in the family at 57, has a developmental disability and severe, chronic mental illness. His brothers and sisters have worked together for decades to advocate for him in the health system.

The Peter Rappolt Family Scholarships for Research in Occupational Performance and Wellbeing are aimed at improving the lives of people with complex, intractable conditions. Peter’s sister Marg sits on Holland Bloorview’s board and chairs its business and audit committee. BLOOM spoke with Peter’s sister Susan, who is chair of U of T’s Department of Occupational Science and Occupational Therapy, about her experiences as a sibling.

BLOOM: It’s quite unusual that there would be five siblings who are all able to support their brother. Where does Peter currently live, and how do the five of you stay in contact with Peter and each other?

Susan Rappolt: Peter is the youngest of the six of us and lives in Cambridge in a long-term care facility with a very high level of care. We all live in southern Ontario and are in reasonably close proximity. My sisters Marg and Gail are power of attorney for care and finances, and they’re frontline contacts with the nursing and support staff. We’ve hired workers to come in and take Peter out when he’s well enough to go for a drive and do activities.

My siblings are retired or semi-retired, and I’m the only one working full-time, so I visit on the weekends. We all text and e-mail after a visit with Pete, to keep everyone up to date on any swings in his abilities or mood.

This morning Marg visited and because Pete really likes picnics, Marg took him for an indoor picnic, because it was snowing. He’s had a slump these past few weeks and been pretty frail and psychotic, and in pain, so it was nice to hear that he’s feeling better. Marg sent out a photo of him eating lemon meringue pie and smiling.

BLOOM: How does Peter's mental illness affect him on a daily basis?

Susan Rappolt: Pete’s had probably every diagnosis you can imagine. He is paranoid and hallucinates and is fearful and very vulnerable to psychotic visual and auditory images when he’s not well. The intensity and frequency of his psychosis has increased over the past 10 years. More often than not, he’s engaging with people who are villainous and threatening him. They’ve tried every medication, and nothing has been successful. It’s really hard to see him suffering. Sometimes we go in and he’ll see us, and he can’t pull himself out of it, but if I give him a hug he’ll start crying on my shoulder.

BLOOM: When did his mental illness start?

Susan Rappolt: As a teenager and young adult. His primary diagnosis was developmental delay. So he has a dual diagnosis.

Pete has many cognitive strengths. He gets and makes jokes, and he has an amazing sensitivity and insight into human dynamics. He’s way more perceptive than other people in the room about how you’re feeling, and about how what someone says may affect others. He loves sports. In better days, he knew the names of hockey players and teams and followed hockey and baseball. When our kids were little he liked to do stuff with them and we’d have family gatherings. We’d go to the local diamond and the kids and Uncle Pete would play baseball.

BLOOM: Was your decision to become an occupational therapist influenced by Peter?

Susan Rappolt: Yes, it really was. When I was 11 or 12 and Peter was six, I recognized his potential to do stuff that wasn’t being realized because he was very much protected. And he was smart enough to milk it. It did influence my thinking, and when I learned about the discipline of occupational therapy, it seemed like an obvious fit.

BLOOM: I read a piece on the U of T website where you talked about having to advocate for Peter in hospital when he wasn’t getting appropriate care.

Susan Rappolt: Yes, that particular incident was horrible and it was outstanding, because we hadn’t faced that kind of discrimination in the health system otherwise. Pete wasn’t doing well and had an incident that looked like a small stroke. We got a message that he was on the acute-care side of the hospital and was being monitored, and would need to be kept quiet for a couple of days.

My sister and I went in and there was a nurse sitting there recording something, which I thought was odd. I asked ‘Is Pete eating? Is he drinking? How are things working here?’ And she said ‘no’ and put her eyes down. ‘So where’s the IV?’ I said. She said ‘No, there’s no IV.’ I knew what was happening then. ‘Okay, you start the IV right now,’ I said. No one had given a do not resuscitate order.

I know that our situation is unique in that we siblings probably have close to 10 post-secondary degrees, and lots of skill sets, and we all speak English. It’s so different for a single mom living in poverty. We’ve very lucky that we have all of these skills and I work in health care. You have to know the system to ask the right questions to get the right care.

BLOOM: How do you cope with seeing Peter distraught, and not being able to find something to treat his mental illness?

Susan Rappolt: It’s really hard to see him suffer. We’ve been very lucky with our experience of the nursing care he receives and the community care workers. They’re lovely people who are so talented and skilled in trying to support him and soothe him. It is heartbreaking. But it’s not a sudden tragedy. We’ve watched his decline over the last years, and are coming to terms with the doctor’s projection that he would see a physical decline and probably an early death.

Although it’s not a good situation, we have turned over many stones and pushed as hard—and in as many places—as we can, so we know there aren’t other answers. We’re really dealing with palliation now.

BLOOM: Why did you decide to fund the scholarships in Peter’s name?

Susan Rappolt: As a family, we know we can’t make big changes to Pete’s quality of life because of his intractable mental health condition. So we’re focused on providing him with whatever pleasure and support we can.

The focus of the awards is research to promote quality of life in individuals who have chronic, declining and, often, very complex needs. How can we bring joy or alleviate pain in a life that is otherwise pretty miserable?

There’s nothing more medicine can do, but perhaps we can do compensatory things with assistive technology, or social interventions, or by modifying an activity so a person can participate. Often it takes an occupational lens to parse that out. How can we intervene with the person, the occupation or the environment to help someone reach their goals and be happier?

BLOOM: I understand the first gift will fund a scholarship for a PhD student at the Rehabilitation Sciences Institute?

Susan Rappolt: Yes. The PhD part is endowed, and our first student should receive that in September. Our scientists in the RSI will supervise that student in the doctoral stream. The second gift creates a research fund for projects by students doing a master of science in occupational therapy.  

BLOOM: What advice would you offer other siblings who perhaps live at home with their parents, but are concerned about how they may support their brother or sister in the future?

Susan Rappolt: It’s a very challenging scenario, and I don’t know of any families that experience it differently. Especially if the person is still residing at home, the family caregivers need support, in the same way that we’ve developed caregiver protocols in palliative care and stroke. I don’t think the same kind of attention has been paid to family caregivers of individuals with a dual diagnosis, like Peter. I’d like to raise awareness of this issue.

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Students run concussion rehab program for youth

By Louise Kinross

There’s little science to show how to best help youth with concussions who continue to be bothered by headaches, fatigue and dizziness.

A new research study at Holland Bloorview is testing the impact of a six-week program of education, low-intensity exercise and relaxation on 200 youth aged 10 to 18 who have concussions, most of them sport-related.

“We want to know if this active rehab approach works for kids with concussions, and, if it does, at what time points after the injury,” says co-investigator Anne Hunt.

The study design is innovative because it’s carried out by students who are clinicians in training. This includes students in their final year of occupational and physical therapy and kinesiology.

The youth with concussions first come in for a series of brain and body fitness tests. “Based on this, we prescribe an individual exercise program that has an aerobic component, like walking or riding a stationary bike, as well as up to 10 minutes of sports-specific coordination drills, and five minutes of relaxation through deep breathing or visualization,” Anne says. “We go through our Concussion and You handbook, which covers things like how to conserve energy, good sleep hygiene and tips for returning to school.”

Over the next six weeks, the youth carry out the exercise program at home and call or visit the students running the program for support. At three and six weeks they come in to have their fitness levels and health reassessed.

“Families tell us that health providers or coaches encourage the kids to push through their symptoms, or to work at a higher intensity than we do,” Anne says. “This can make their symptoms worse or slow their recovery. We teach them what it means to work at a low to moderate intensity. Ours is a very careful, methodical program. Some kids may only be able to start at two minutes of aerobics when they first come in.”

Having students run the program has many benefits. “We tell the clients participating that they’re not just helping us learn about concussion, that they’re training these students,” Anne says. “The kids tell us they love working with the students, who are younger, whereas I’m sort of more of a mother figure. All of the students come in with a wealth of experience. For one client they may need to develop sport coordination drills for volleyball, whereas another client needs dance or lacrosse drills. The students work together, given their different professional roles, to divvy up the assessments and scope of practice.”

Andi McHugh, a physiotherapy placement student, says she’s gained confidence “because we’ve been given a lot of autonomy. In other placements, you’re working more closely with your supervisor. Here, it’s more self-directed learning but with peers you can bounce ideas off.”

Tesca Andrew-Wasylik, who just finished a five-week placement in the concussion program, agrees. “Being part of a student-run clinic is such a unique experience. I've enjoyed the challenge of being presented with a problem and finding a way to solve it independently, while still knowing I’m being supported by my supervisors. I think it’s very successful in preparing students for the real world and reinforcing autonomous learning. I’ve learned so much about collaborative practice and family-centred care, as well as learning from the families and kids that I worked with.”

Tesca graduates this year as a physiotherapist. She's shown working with Emma, 10, in the photo above.

The research is funded by Scotiabank, and is cost-efficient because it’s implemented by students rather than staff.

Study results are expected in two years and the researchers hope they will inform best-practice guidelines on rehab for youth with concussion.

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A therapist harnesses the power of play

By Louise Kinross

Salma Kassam landed her first job as an occupational therapist at Holland Bloorview 22 years ago and has been here ever since. She works with inpatient children who have brain injuries sustained through trauma or serious illness.

BLOOM: Why did you get into occupational therapy in children’s rehab?

Salma Kassam: When I was a student I was one of the lucky few who had several placements at Bloorview. I did community outreach visits to nursery schools and had an inpatient placement working with the babies and young kids on Unit C. After one of my placements, I volunteered with the babies and would come and do 'cuddle time.' I fell in love. I thought the kids were amazing and the clinicians walked on water. I was so enthralled with everything we could help the children achieve. Once I discovered Bloorview, I was in it for life. It was magic.

BLOOM: Who do you work with now?

Salma Kassam: I see mostly school-age and older children who have a brain injury as a result of a motor vehicle or other accident, or from a tumour or encephalitis. We usually see kids four times a week for about 45 minutes. There are kids who are still very acutely ill, and who are learning to eat, walk and talk from the beginning again. And there are others who are more able and doing more fine motor and cognitive assessments to look at skills to get them back into the community.

BLOOM: What kind of changes do you see in the kids?

Salma Kassam: We’re so blessed. We see amazing things. It shows the resilience of children and the importance of family support. The big difference working with children is that children are motivated by play and move on with play. They don’t harp on the negative as much as adults do.

Kids have an amazing spirit that drives them forward. It takes them time to learn that this is a safe place that’s engaging and playful and fun, and not just all of those intrusive procedures they may have had before getting here.

I remember one mother who videotaped her child during rehab. He went from having a thumbs up and down to [communicate], and not being able to stand, eat or hold a block, to walking independently, eating regularly, speaking and going back to his community. Of course he still had things to work on, but it’s nice to see the critical role we play in the early stages.

BLOOM: But not all children with brain injury have that kind of recovery. Some of them are very changed from the child they were before.

Salma Kassam: There can be an overwhelming sense of grief and loss for the family and client, and we see that. But kids are able to get past some of it in a way that’s amazing and that’s the resiliency I’m talking about. They still want to do the things they used to do, and they find ways to do things. Not everyone makes the same recovery. There are children we couldn’t help as much as we would have liked, as well as ones who defy expectations. There are so many things you can’t predict. Children who recover physically but have invisible cognitive impairments or personality changes face different challenges in the real world.

BLOOM: Because everyone sees the same person on the outside and assumes they have fully recovered.

Salma Kassam: Exactly. There are also kids who look very impaired physically and have cognitive strengths. The range of ability is so broad that we really have to look at the uniqueness of each individual—at their strengths and limitations—in the same way we would for any of us. We have to shed our preconceived notions when we see someone with a certain presentation.

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

Salma Kassam: I think time. We want to be able to spend the quality of time with each client and we try to make the most of every minute. But there’s a lot of things behind the scenes: documentation, communication with community people or accessing resources or getting information about equipment. And other demands to participate in education, as a teaching hospital. So prioritizing and managing and helping each family to the best of your capability is the challenge.

BLOOM: What about those times when a client doesn’t make the progress hoped for?

Salma Kassam: The brain is unpredictable and it heals in its own way, and we can only do what the brain will allow. I may try the same intervention with two similar clients and one may respond to it and the other not. It’s outside our control. It can be very difficult when two families with similar children have completely different experiences in rehab, and it’s not necessarily to do with the clinician but with the client’s type of brain recovery.

BLOOM: How do you deal with that?

Salma Kassam: I have a reputation for crying. I do sometimes wear my emotions on my sleeve. I celebrate with families and I grieve with families. I think we can still maintain a professional relationship without giving away our human qualities. I want to support the parent. We have a lot of things in place for families, but we often need to remind parents that they need to look after themselves and have an opportunity to express their grief and loss and their joy.

BLOOM: What is most rewarding about your job?

Salma Kassam: It’s always the kids. They always bring sunshine to my day. In so many ways I learn something every day and I help someone every day and that’s a pretty good life.

BLOOM: What advice would you give parents?

Salma Kassam: Be patient. It’s hard. Listen and learn from experts, but recognize that you’re an expert in your child, so share what you know. Hope is important and acceptance is important. Be there as much as you can, but also, sometimes you can help your kid by not helping them, which allows them to grow.

BLOOM: What advice would you give a therapist starting out on the unit?

Salma Kassam: There are so many skilled clinicians here who I’ve learned from and who continue to inspire me. So take the expertise of those people who’ve done this for a lifetime. You can learn so much from the people around you and from the kids.

Sometimes, as adults, we’re very product oriented and focused on the end result. Children are about the process. They learn from the act of doing and if the product isn’t perfect, it’s okay. Remember that in the end your therapy session with a child may not be perfect, but you’ve both learned from the session and that’s the important thing.

Take care of yourself and know when to ask for help. If you’re overwhelmed either physically or emotionally, go to occupational health or go to your family doctor or go to your massage therapist or whatever it takes to get you through that day. We do have days where our body or mind gives up.

Value your time outside of work—whether that’s recreational opportunities or family or whatever makes you happy and joyful. Brain injury can happen to anyone, at any time, so appreciate every day the things you can do. And wear good shoes.

BLOOM: You mean comfortable ones.

Salma Kassam. Yes. It's a very busy place.

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The trouble with rehab 'miracles?' They ignore luck

BLOOM is always looking for parents and professionals to write for us or be interviewed. This piece by occupational therapist Veronika Lukacs came to us because Tom Nantais, a former Holland Bloorview researcher, told me she'd have great insights to share. Thanks Tom and Happy Birthday! Veronika (above) with Russell Winkelaar helped build 62 StopGap ramps to improve access to stores in London, Ont. this weekend. Woo hoo! Louise

By Veronika Lukacs

Every so often I read a local news story about someone's experience in rehab following a devastating physical injury. Nine times out of 10, the story makes me angry.

I'm a newly graduated occupational therapist in a happy relationship with a handsome man named Russell Winkelaar, who sustained a T6 spinal-cord injury at the age of four from a head-on collision with a drunk driver. Russell is paralyzed from the armpits down and uses a manual wheelchair to get around.

Prior to studying OT and meeting Russell, I spent two years looking at the effects of mass media through a master of arts degree at Western University. People are surprised to learn about my media background, but I think it complements occupational therapy practice well.

A person's cultural environment can be a barrier to meeting rehab goals, and it can also shape what kinds of goals a client wishes to pursue. What we see in the media—be it a news article or fictional TV program—gives us clues about the meaning our culture ascribes to life with disability. It also tells us what rehab outcomes the mainstream considers successful. Many of the stories I read are similar and have become cliché.

One popular one goes like this: Young, athletic man in his early 20s breaks his back pursuing an extreme sport. He sustains a spinal cord injury, and doctors tell him his chances of walking again are non-existent to slim. The young man goes through gruelling and intense rehab sessions. Through hard work, personal strength, and perseverance, the young man defies all odds, proves the medical team wrong, and walks again.

I call this the "miracle story." The miracle story often features a person with spinal cord injury, but there are variations that focus on people with congenital disabilities or other acquired disabilities.

The miracle story bothers me because "success" or "overcoming disability" is always attributed to personal strength and willpower. That's great for the person who walks again, but what does it say about the person who doesn't? The miracle story burdens people by making them feel like it's their fault if they don't recover. It suggests that people control their rehab outcome through positive thinking.

The miracle story is misleading. It's usually vague about the type of injury the person sustained. Often times, the individual had better chances of walking again, but the story conveniently left this out.  

Yes, rehab can improve one's chances of re-gaining mobility, but there's also a great deal of luck involved, depending on the type of injury or disability. People don't like acknowledging the luck factor in rehab outcomes. And the reality is that no two people's situations are the same

Unfortunately, I've seen people in rehab programs read these stories, compare their progress and feel they didn't measure up.

In addition to demoralizing patients who won't walk again, the miracle story influences how loved ones support the person. Family members ask me about these stories and share them in hopes of raising the client's spirits and motivation. When this happens, the person who doesn't make a full recovery not only feels their own disappointment, but that they've somehow let their family down.

The miracle story serves as a reminder that our culture sees wheelchair use as undesirable. Walking is the ultimate goal, even though for many people it isn't attainable.

"Everyone wants what's best for their child, but we're stuck in the mentality that getting back to the way you were before is best, as opposed to learning how to adjust," my partner Russell says. "Instead of waiting for the child to walk again, and being depressed for a few years or in denial, parents need to build their child a ramp."

I'd like to see more varied news coverage of the rehab process to balance out the negative effects of the miracle story. Why is this story held up as the ultimate success? What about the person who never walks again, but explores new passions and contributes to their community?

While "being positive" has its place in rehab, a distant hope of returning to an old life may not be beneficial. Full recovery and walking need not be the only goals, and people in rehab need constant reminders that people with disabilities can lead happy, fulfilling lives.

As an occupational therapist, it's difficult to advocate for changes to how the media covers rehab. It's also challenging to balance inspiring hope in clients while remaining realistic about the likely outcomes. In fact, it's often impossible to know for sure what rehab outcomes are realistic!

What we can do is address the problems with these stories with clients and families. We can explain why the experience of one person in a news article is just that—the experience of one person.

Russell says that changing society's views from the ground up is essential. "If close family members won't accept that their loved one won't walk, how is society supposed to?"

People need strategies to help shift their perspective on what it means to live with a disability. That's why peer support from those who have gone through it, and counselling programs that address psychosocial need, are invaluable.

I'd like to see future programs directed specifically at assisting family and friends in how to best support their loved one.  "Disability is always going to exist," Russell says.  "It can happen to anyone and no one wants to talk about it. That's why it's so terrifying. If people could see that having a disability isn't the end of life, they'd be a lot less afraid of it."

Please send your story ideas to lkinross@hollandbloorview.ca

Don't forget to fill out our BLOOM survey for parents, professionals and other readers.

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Dutch student heads home with new vision of advocacy

By Megan Jones

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

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

BLOOM: How long has your work focused on disability?

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

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

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

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

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

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

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

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

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

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

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

BLOOM: What did you take away from those interviews?

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

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

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

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

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

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

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

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

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

BLOOM:  How would you describe Holland Bloorview?

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

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

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

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Families teach this OT student key lessons

Eric Smart (white shirt, back row, on the right) is an occupational therapy (OT) student at the University of Toronto and a familiar face at our BLOOM speaker nights. Eric says he gets more from hearing directly from parents and people with disabilities at BLOOM nights than “from textbooks and class lectures. The most meaningful lessons have come directly from the experiences, the honesty, and the hearts of BLOOM speakers—parents, children, an actor and actress, a business entrepreneur, a former Olympian and stepparent, and a parent author.” Here he shares five things he’s learned from family stories. Thank you Eric! Louise

Therapy needs to be balanced against family needs
In school we’ve learned that within our resource-constrained health system, therapy programs are primarily judged on whether objectives were met. Less attention is given to the process of "how" they were met. Through BLOOM speakers I’ve learned that if we look at rehab in a vacuum we risk delivering unintentional messages that a child is inferior and always needs to be improving; that they could always be a little “better” if they just did more therapy, even if that little amount took every bit of energy the family had left. I must keep my eyes, ears and mind completely open to families in case they choose to deliver the message that “Therapy is not right for us at this time.” 

Children’s rehab is not an exact science
The way a diagnosis is conveyed can hurt parents. In school I’m given textbooks and read about many conditions over the years. My knowledge is built gradually. Parents don’t have the luxury of learning about their child’s condition slowly. I’ve heard from speakers that when a diagnosis is made, emotions cascade in and create a world of uncertainty and confusion. 

I see now that part of my role as a therapist is to help parents navigate through a deluge of new medical terms and adapt to a new way of living. Many parents have described their devastation at the words professionals use to predict their child’s future abilities. Some parents are surprised when the predictions don’t come true. I need to remember that children’s rehab is not an exact science.

'The whole is greater than the sum of its parts'
I must be wary of viewing child clients solely as a set of distinct attributes of interest to health professionals. This doesn’t match the way parents view their kids. In school we’ve learned about family-centred care and how parents know their children best (obviously!). So naturally I feel the need to see children through their parents’ eyes if I hope to make a positive difference. 

This perspective makes me better understand why parents and clinicians alike question the tendency to plot and compare children’s abilities on a bell curve. These comparisons don’t take into account the complexity of a person and the unique life path they’re on and potentially lead to a focus on deficits. 

An OT may be pressured into viewing clients in terms of isolated abilities due to time restrictions and budget constraints. The old adage “the whole is greater than the sum of its parts” is an expression I can use to remind myself to never lose sight of the person in front of me.

Parents need time to be parents
At BLOOM speaker nights I learned that while I chose to be an OT, a parent of a child with a disability continually has new roles thrust onto their parenting "job description." They may become part OT, part physical therapist, part nurse, part social worker, part child-life specialist, part crisis counsellor, part case-coordinator, part educator. While I work 40-hour weeks, parents are working non-stop around the clock. This realization is humbling and puts my role as an OT in perspective. 

I will respect the days when parents tell me they don’t have the energy to educate me—one more professional in a long list—about every detail in their child’s long medical history. I will think carefully about recommending therapy programs that take time away from the limited time parents have to “just be parents” (not therapists) with their children. I must be hyper-vigilant of parents on the verge of burnout so I can encourage them to pursue respite and activities that will give them a break. 

Sometimes as a student I wonder if I have what it takes to become a professional OT, so I can only imagine how uncertain parents must feel as they take on the extra roles that come with parenting a child with special needs. I must never allow my recommendations to appear judgmental or to suggest that parents are not doing a good-enough job. 

I think parents need to be reminded that they are the most invested in their children and that they have a lot to teach professionals. I say this because my brother has autism and my parents have filled his life with such meaningful activities and social connections that I can only hope to come close to modelling what they’ve done with my clients one day.

‘There’s always something more I can learn’
Finally, these BLOOM nights have made me excited and certain that I will learn new lessons from each child and parent I work with in the future. Whether someone shares their personal meaning of vulnerability with me or demonstrates strength in ways I never could have imagined, I know these experiences will make me a better OT—bit by bit. 

I am thankful for the BLOOM speakers who so openly told their stories, and I will feel privileged to listen to the stories of my future clients' families.

The BLOOM talks have shown me that no matter how many years of school I attend, there’s always something more I can learn. I will never be an “expert.”

Now, as I get ready to start my second and final year of OT school, my goal is to become a respectful learner, fortunate enough to contribute the occasional word to the brilliant life stories being written and told by parents and children at Holland Bloorview.

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Does your child struggle with keyboarding?

Touch typing isn't the answer!

I wasn’t great at sports growing up, but I did excel at piano, so it wasn’t a surprise when I aced my Grade 9 typing class.

Our elderly teacher made two rocket ships out of bright construction paper and placed them on a wall chart to track our collective typing speed. She divided the class into two teams and I helped propel our rocket to the top with my 90 word-per-minute scores.

Back in those days we were taught touch typing, memorizing the place of each key and the finger that should strike it, so that eventually we could type without looking. We placed our fingers on “home row,” then did meaningless drills, such as using our right index finger to hit “j” repeatedly.

Touch typing is still the gold standard for keyboarding instruction, but for children with fine-motor problems, it’s a recipe for failure, says Cynthia Tam, occupational therapist at Bloorview.

“Children who struggle to use a pencil to print are not able to move and isolate each finger, which is the basis of touch typing,” Tam says. “When children have fine-motor difficulties, we want to give them a computer to take away the fine-motor challenge. But touch typing simply adds another barrier.”

A Bloorview study of 15 clients with physical disabilities in 2003 found that a “hunt and peck” approach with one or two fingers – where children scan the board for the key they want and hit it – was more effective.

Based on their findings, a team of Bloorview occupational therapists and rehab engineers developed an interactive, game-based typing program that focuses on getting kids to type functional words rather than practise letter combinations using all 10 fingers.

Thirty-two children aged six to 12 with a variety of developmental and physical disabilities have taken the 10-week program. Each week, they begin with a group activity such as typing bingo, or chatting live with each other or online through Ability Online, a community of children with disabilities and illnesses. Then they learn a new typing game.

Bloorview occupational therapists Jennifer Mays and Mary-Beth Sophianopoulos created 10 types of games with multiple themes. For example, in Type Your Own Adventure, children type phrases or sentences to direct what happens next in an illustrated story. In Colour by Typing, they type the names of colours to fill in areas of a picture. In Wacky Stories, they type silly words into a story.

“We try to use high-frequency words so that they become automatic at typing those words,” Mays says. “And the games are interactive – they’re typing something to get the computer to do something, so it’s engaging.”

Children do 10-minute challenges each day as homework.

By the end of the program, students on average increased their word speed by three-and-a-half words per minute, and accuracy and punctuation improved. “Some parents reported that they were doing better with spelling skills and were more confident with computers,” Mays says.

The goal isn’t that children become speed typists, but that they acquire a speed that’s faster than they could print. “Only a secretary needs to type at 80 to 100 words per minute,” Tam says. “A lot of adults type with one or two fingers, at 30 words per minute, and they’re functional at work. We need to make parents aware that children with fine-motor problems don’t benefit from touch typing. Instead, we see significant gains when they do fun, engaging typing activities for 10 minutes each day.”

Chatting with friends online and using e-mail are great examples, Tam says.

Next steps are to expand the vocabulary in the Bloorview typing games so children of other ages can benefit, and to make the curriculum available to a larger audience. The Bloorview typing program is offered in the spring and fall. For more information, call 416-425-6220, ext. 3639.

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