Friday, May 17, 2019

In nursing 'everything good comes from the heart'

By Louise Kinross

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

BLOOM: How did you get into this field?

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

BLOOM: How did you choose nursing?

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

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

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

BLOOM: What is it like working with this population?

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

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

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

BLOOM: What’s most challenging about this work?

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

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

BLOOM: What are the joys?

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

BLOOM: What emotions come with the job?

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

BLOOM: How do you manage those emotions?

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

BLOOM: What have you learned from families?

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

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

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

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

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

Thursday, May 16, 2019

Collective advocacy must replace mother-led campaigns

By Louise Kinross

A decade of activism by British mothers of children with disabilities hasn’t produced positive change in the lives of disabled people, write two researchers in a fascinating article this month in Disability and Society. The authors—Katherine Runswick-Cole and Sara Ryan (photo above)—are disability studies scholars and parents to children with intellectual disability. “Despite the efforts of countless mothers of disabled children, and others, over the last 10 years, the outlook remains bleak,” they write. “We live in a world now where our children with learning disabilities will die on average 23 to 29 years before their peers (NHS England 2017), startling evidence of the limits of advocacy for, with and by learning disabled people.”

We interviewed Sara in 2015 about the preventable death of her son Connor Sparrowhawk, an 18-year-old with autism and seizures. In 2013, Connor drowned alone in a bath in a National Health Services treatment unit. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. Last year, Southern Health in Britain was fined just over $1.8 million dollars for this preventable death.

Sara and Katherine, who are at the University of Oxford and the University of Sheffield respectively, argue that campaigns based on mother advocacy have failed for generations. Yet every new generation, not looking back, insists they’re pioneers in the cause. The authors suggest we need to move away from mother advocacy—which is undermined by a culture of mother blame, focuses on individual families vs. systemic problems, and pits mothers of young children with disabilities against mothers of adult children—to a new collective activism that brings all sorts of people together.

BLOOM: You note that many parents of children with disabilities believe that the general public just doesn’t understand the discrimination their kids face, and that if only they were made aware, changes would occur. But you don’t buy into that. You say you’ve been doing this work for 10 years and conditions in the U.K. for people with disabilities have only gotten worse.

Sara Ryan:
Yes. There was a good chunk of solid policy in the U.K. at the beginning of the 21st century that engaged with learning-disabled people as human beings who we need to value, and who have aspirations. That positive movement has come to nothing. Things have gone backwards.

Ten years ago, we thought we were pioneers in raising awareness and we’d sort everything out. We didn’t realize the generations of parents and mothers who had done the same things we were doing. We disempowered the people who came before us.

BLOOM: You point to something I’m very aware of—which is a split between young parents of kids with disabilities and older parents of adult children, who have been advocating for a long time. I know when my son was young, I didn’t want to hear about the experiences of adults with disabilities because I wanted to focus on his unlimited potential. I wanted to believe we had the capacity to make big changes.

Sara Ryan:
As young parents you’re totally fresh, and you think things won’t be as bad for your children.

BLOOM: In a way, you don’t want to hear about the real struggles of older parents.

Sara Ryan:
I understand that. You’re facing something unexpected and unfamiliar, and you have a lot to grapple with. But it’s really unhelpful in terms of social movements and change if the movement is inherently fragmented when people break off when their children go into adult services.

BLOOM: It’s so short-sighted, to turn our backs on the families who have done the hard work before us.

Sara Ryan:
It’s also sustained by big charities who almost 'groom' the younger parents to make them feel they’re pioneers in leading the way. These charities have been saying the same things for 40 years, and it’s not in their interest to say it hasn’t worked. They present their campaigns as something new for parents of young children, while erasing the work that’s been done in the past.

BLOOM: I guess promoting a campaign that focuses on young children—and the sense of possibility inherent in them—is more likely to be well received than one that focuses on the realities for adults.

Sara Ryan:
Young children are cute. But there’s a change happening with young mothers today. There’s one mother on Twitter who posts a photo of her young son with Down syndrome beside the facts about the early death he faces. She wants people to think about that, and it’s really powerful.

BLOOM: You talk about mother blame in your article—whether we’re blamed for our child’s disability, or blamed for not doing enough or the right therapy, or blamed because our children are costly. How does mother blame influence the efficacy of social justice campaigns by mothers?

Sara Ryan:
That’s an interesting question. In our original paper we were saying that mothering is an invisible endeavour, but by token of having a disabled child, your mothering becomes visible. You’re seen as a poor mother due to your child’s unruly behaviour.

When we began our campaign #JusticeforLB [LB stands for laughing boy, a name Sara used in her blog about Connor], there were attempts by the trust, the local authority and NHS England to blame me, or to cast me as an irrational mother, to diffuse the strength of our arguments. But what was unique about our campaign was that over time, the demand for answers became a collective endeavour by a diverse range of people. Most had never met us. That reduced the potency of the 'mother being the problem,' so our campaign was very effective.

BLOOM: You refer in your article to a new form of advocacy called unmothering. Can you explain?

Sara Ryan:
It’s about loosening that expectation that the child and mother bond is somehow essential, and allowing other people to step up and be involved in a campaign—to take part and speak and act. If the campaign is just about a mother, it’s an individual focus, which is necessarily weaker.

BLOOM: You write that unmothering doesn’t devalue mothering, but disrupts ‘the idea that the mother alone is responsible for raising children.’ How was the #JusticeforLB campaign an example of unmothering?

Sara Ryan:
It was the collective approach of it. We ran a campaign within the campaign called 107 days of action, to mark every day Connor had been in the unit before he died. We asked people to adopt a day to fundraise for our legal fees, or to raise awareness. We had a teenager who canoed 100 km to the House of Commons with a photo of Connor on her back. We had a Brownie pack in New Zealand that drew pictures of buses, which Connor loved. We had people who did lectures or sports events in Connor’s name. People adopted a day to do cake sales. These activities had nothing to do with mothers, and in most cases they were undertaken by people who didn’t know Connor or our family.

BLOOM: How did you get people who weren’t personally invested in your family to participate?

Sara Ryan:
I’d been writing a blog about Connor, and early on it was really funny stories about the hilarious things he did. By the time he died, so many people were reading the blog, which was anonymous at the time, that they felt they knew him. That made the impact of his death more powerful. He wasn’t a learning disabled person. He was a fully fleshed out member of our family, and he was very funny. The fact that he was a beautiful young man with funny stories was what took hold.

BLOOM: Yet you note that storytelling by mothers hasn’t traditionally produced results.

Sara Ryan:
I think stories are important, but I don’t think they make change. The Disabled Children’s Partnership recently launched a new campaign called #TheSecretLifeOfUs to raise awareness of the challenges faced by families. But the campaign is premised on the mistaken assumption that the lives of disabled children are hidden.

BLOOM: Yes, you note that children being excluded from school and bullied, and the isolation and poverty of families, has been well documented.

When Connor died, the NHS trust first blamed his death on him, saying he had died of natural causes. Then they shifted to criticizing you.

Sara Ryan:
A day after Connor died, a document called a briefing on the mother’s blog was produced and circulated, which suggested that I might be troublesome because I’d written that Connor had had an earlier seizure. Blame is completely at the heart of it. The biggest example was before Connor’s inquest, our solicitor read transcripts of evidence given by staff. They said things like ‘My relationship with Dr. Ryan: I was very scared of her. She was unusual.’

BLOOM: As opposed to staff testifying as to why it was that Connor ended up behind a closed door in a bath where he had a seizure?

Sara Ryan:
I had said to staff ‘Connor is having seizures.’ It kept coming up in the inquest that the defence for each of the staff members was that the mother was so difficult it was impossible to provide good care to Connor. When Connor was in the unit I wouldn’t have dared to be angry, for fear of retribution. We were so worried about Connor.

Read the annual reports of the British Learning Disabilities Mortality Review.

Monday, May 13, 2019

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

By Louise Kinross

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

BLOOM: How did you get into this field?

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

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

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

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

BLOOM: What is a typical day on reception like?

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

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

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

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

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

BLOOM: What are the joys of the job?

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

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

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

BLOOM: What are the greatest challenges?

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

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

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

BLOOM: What qualities does someone need in your role?

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

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

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

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

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

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

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

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

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

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

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

Tuesday, May 7, 2019

Bobbi finds her dream job in health records

By Louise Kinross

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

BLOOM: How did you get into this field?

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

BLOOM: What is a typical day like here?

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

BLOOM: What is it like to transcribe reports?

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

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

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

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

BLOOM: What are the joys of your job?

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

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

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

Bobbi Champagne: What are the challenges?

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

BLOOM: What can help staff make the leap?

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

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

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

BLOOM: So you go back to doctors to clarify?

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

BLOOM: What have you learned about families?

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

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

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

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

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

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

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

Payal sees children's rehab from a newcomer perspective

By Louise Kinross

Seven years ago, Payal Khazanchi and her family immigrated to Canada from Oman. At age five, Payal’s daughter Aakanksha was diagnosed with global developmental delay. Payal assumed they’d be connected with rehab services, and be able to meet other families like theirs.

But it didn’t happen.

“Because education and health are government-supported, I presumed if there was an issue with my daughter, the system would tell me where to go,” Payal says. “But instead of one single, straightforward path, the system is so fragmented that there are a million paths to reach what you need.”

It took Payal years to find Holland Bloorview, and it was only due to a chance encounter at a baking class when an acquaintance mentioned the hospital. Before that, Payal had quit her job to take care of Aakanksha, who is now 12. She spent hours on public transit travelling to multiple spots all over the city for services like physio, dentistry, orthotics and optometry.

Payal grew up in India before moving to Oman. She says Canadian health providers need to understand that disability is stigmatized in both countries, and in other areas in the region. 
“Newcomers come with the mindset that disability is a taboo, and you shouldn't talk about it. They may be concerned that their child's disability will affect their legal status, such as permanent residency or Canadian citizenship. We didn’t have any family here and we didn’t know anyone in a similar situation.” 

No one helped Payal navigate the system, so she had to “start from scratch,” searching for resources online.

“For the first three years, I didn’t know there was federal and provincial funding for families like ours.” For example, Payal’s daughter wears glasses that cost $750 a pair, but no one explained that a part of it could be covered under these programs.

Once Aakanksha was seen by a developmental pediatrician at Holland Bloorview, she began receiving therapies and other services under one roof. “It saves me a lot of time running around as a parent. Holland Bloorview is like a one-stop for resources.”

Payal says Holland Bloorview can better support newcomers by identifying them early on, and connecting them with a social worker and a family leader, a parent in a similar situation who volunteers at the hospital.

“The social worker has the knowledge, awareness and resources to share with someone new. I only got a social worker after six years in the country. She showed me about 12 forms. In three years of searching online, I had found eight, and filled them in myself. Getting this information, and filling the paperwork out, is a challenge for newcomers. We also need respite, and we don’t know where to go or who to trust.”

Payal says meeting Jean Hammond and Beth Dangerfield, parents who run our family leadership program, was life-changing. “It was wonderful to know that I’m not the only one struggling, and that I could talk with someone who would understand if I was overwhelmed or anxious. If I had been connected with a family leader earlier on, I wouldn’t have felt so lonely.”

Now Payal is giving back as a family leader herself. “I want to be a voice for immigrants who were like me,” she says. “I want to be someone they can talk to, who can share what I missed out on when I was first here. I want them to feel that they're accepted and can gather more information—and that they're not the only one.”

She’s doing a master’s in adult education and community development at the Ontario Institute for Studies in Education at the University of Toronto. 
“I'd like to help other immigrants come out of their shell and help their child feel comfortable in their own skin. I'd like to help newcomers navigate the system and share the knowledge I've gained over the years. If I can encourage someone to access supports, and change their mindset, based on my lived experience, I will have contributed my bit. 

Payal recently interviewed eight Holland Bloorview parents to get their feedback on a research idea she has where one child with a special talent will mentor another. “When we go to the hospital or school, the focus is on the child’s disability and what’s wrong. I want to change the lens from what’s wrong to what’s strong? If a child has some innate abilities and strengths, let’s focus on those. The parents I spoke with said they believe their children have abilities that can be built upon. They’d like to see their child sharing their skills and feeling good about themselves, as opposed to always being at the receiving end of a support person or therapist or care worker. They feel their children can not only receive learning, but impart it as well.”

Tuesday, April 30, 2019

Jess translates studies into words that families understand

By Louise Kinross

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

BLOOM: How did you get into this field?

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

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

BLOOM: What is a typical day like for you?

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

BLOOM: What’s an example?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

BLOOM: You mentioned that you work remotely?

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

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

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

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

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

BLOOM: How does that work?

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

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

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

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

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

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

Thursday, April 25, 2019

A front pack takes Louise where she wants to go

By Louise Kinross

Louise Sertsis never saw herself as an entrepreneur. But that was before she was diagnosed with multiple sclerosis, and began using a wheelchair.

It bothered her that to carry a purse or bag she had to hang it on the back of her wheelchair, out of sight, and ask her husband—or a friend or stranger—to pass it to her.

“I felt very dependent on others,” says the Whitby, Ont. resident. “It gave me the idea of redesigning a knapsack that attaches to the front of the user, to promote independence and safety and the feeling that I can do this myself.”

For the last couple of years, Louise has developed prototypes of what she calls the Handi Pac, which is two bags in one, separated by magnets. She started a business, called Advanced Freedom. Next month, she's launching a Kickstarter campaign to fund production of the first 300 bags.

One part of the Handi Pac sits on your lap and is attached with a waistband secured behind your back with magnets, Louise says. “You’d put anything you’d normally carry in a purse on a daily basis in it”—like a wallet, keys, tablet, phone and sunglasses. “It’s attached to you, so there’s no concern about the bag falling off when you go over a bump. That’s what used to happen, when I placed my purse on my lap. And because the bag is attached, someone can’t take it from you.”

The second part is worn from your knee to the top of your foot. It carries 15 lbs—the equivalent of a carry-on bag at the airport—and is the largest wheelchair bag on the market, Louise says. It attaches to the users’ calves with a magnetic system. “It’s great if you’re travelling, or going to school or going to the gym.” 

The pack is made of water-resistant, durable cordura nylon. The large bag sits on your feet, so if carrying a heavy load, you may need to take a break.

Louise says she knew nothing about business—she studied science and psychology at school. “I had to learn everything from the ground up. I’m a sole proprietor.”

Online, she made a chance contact with a manufacturer of traditional backpacks that are sold in stores like MEC. “When I told him about my idea, he thought it was amazing,” she says. “I was missing the business side, and he mentored me. He’s made all of my prototypes.” 

The current design is sized for an adult, but Louise says a child-sized version is in the future.

Louise says the first time she tried a prototype she “jumped for joy. I was ecstatic because it worked so well for me that I knew it could help a lot of people. It was so gratifying to see my solution in physical form.”

Louise plans to sell her bags internationally, and finds herself on social media at all times of the day and night, answering questions from prospective customers. 

Check out this video of Louise demonstrating how to use the Handi Pac. You can find more information on her website, or follow her on Facebook.

Thursday, April 18, 2019

Omar says brain injury has turned his shy personality bubbly

By Louise Kinross

Rehan Siddiqui tells the chilling story of how his son and daughter were hit by a car that went through a red light. “She hit both kids going 60 km an hour,” he says. “How could the driver not realize the light was red? There was nothing wrong with the signal.”

Rehan, who sleeps inches away from his son Omar’s hospital bed at Holland Bloorview, says that Omar suffered a severe brain injury and was on life support for 19 days. He spent two months in acute-care, and has been here since January.

Omar, 14, has a slightly different perspective. “It’s a great story to tell my kids,” he says with a smile. “It was like one day I fell asleep, and the next day, I woke up in a wheelchair in this hospital.” The other thing he woke up with, he says, was a new personality.

“Before, I used to be really shy and quiet. I would never crack jokes. I was never brave enough to raise my hand up to answer a question in school. When we did presentations, I wanted to go last.”

Now, “my family says I can never stop talking. I’m always cracking jokes, and I like acting. 'Reporting live,' he says, holding a mock microphone, 'right now, I’m doing an interview with this young lady.'”

When Omar is discharged in two weeks, he says his first order of business is to put together a video for his YouTube channel. “I want to tell the story of my accident and recovery. Bloorview said it might put it on their website for other kids to see.”

Child-life specialist Amarens Matthiesen says Omar has been a great support to other children on the unit.

For example, when Omar encouraged one boy, the patient smiled for the first time. “I said ‘Oh hey, I was just like you. I was sound asleep for a month, and I needed to be in a wheelchair. But look at me now. I can jump. I can run.’ I gave him a lot of motivation.”

Omar used to want to be an architect. “I love to build stuff, and me and my father do handiwork around the house. But I changed my mind since my accident. Now I want to become a YouTuber when I’m older.”

Omar says his best advice for rehab staff is to have fun with patients. “I think most are very good at having a sense of humour, and joking around. Some are really serious, which makes me feel a little uncomfortable.”

Omar says the hardest part of rehab was when his favourite child and youth worker injured herself, and was off work. “She was a beautiful, caring woman who I loved. She would push my wheelchair everywhere, and she would do anything to make me laugh. We had really funny jokes. We were heart to heart.”

Omar is excited about returning to school. “He’s a miracle child,” his father says.

Tuesday, April 16, 2019

Hope: 'We cannot take it away from parents'

By Louise Kinross

Imagine coming to the scene of a car accident and being told it’s your child that’s been hit. But your child is not there. She's been taken to the trauma centre, a 30-minute drive away.

Or entering a room and finding your teen unconscious from a self-inflicted injury.

Or hearing a code blue called after taking your child to Emergency with what you thought was the flu. He's suddenly developed a life-threatening illness.

For almost three decades, Holland Bloorview family therapist Caron Gan has heard hundreds of stories from parents whose children suffered a brain injury as a result of unexpected trauma or illness.

“One of the most important things I’ve learned from working with families is the power of supporting hope,” Caron says. “We cannot take it away from parents. Hope is what helps parents keep going for their child. It helps them to catch their breath, so they can be at their best for their child, and be active in their care.”

According to the National Child Traumatic Stress Network, 80 per cent of parents who witness a child’s accident, self-injury or sudden, serious illness experience symptoms of traumatic stress. For about 20 to 30 per cent, these problems will persist in a way that affects everyday life.

“I see a range of responses,” Caron says. “Some parents need to talk openly and candidly about how awful or horrific the experience was. Then I have parents who are not yet ready to talk. It’s way too painful. Avoidance is a common feature of traumatic stress. I know underneath, they’re all experiencing high levels of distress, but coping with it differently.”

Parents often struggle with sleep. They may have trouble falling asleep. They may have nightmares, or wake up in terror, recalling how they found their child, or what doctors told them at the hospital. “They remember every word and detail, and when they describe those earlier experiences, it’s seared into their memory,” Caron says. “Common things I hear from parents are that they were told their child will not walk, or talk, or be able to go to school like they did in the past. Some parents are even asked about organ donation.”

Supporting parent hope is essential, Caron says. “My role is to gauge where the parent is at, and to walk alongside them in that journey. It’s not uncommon for a distraught parent to say ‘I don’t want to hear anything about my child’s brain injury unless I know he or she will have a 100 per cent recovery.’ I've learned that if I don’t hear what that parent is saying about how they want to remain hopeful, and launch into education about what can happen after brain injury, I’ve lost that parent. That parent will have difficulty opening up and trusting me to have further conversations.”

Parents’ readiness to accept their child’s current situation is a process that can’t be rushed. Hope is fluid, Caron says, and changes over time. “Initially, their hope may be that their child will live, and they are so relieved that their child survived. Then it may move to hope that my child will recover fully from their injury or illness. That may morph into hope that my child will make gains in rehab, will walk again or return to school, or adjust to their new normal. It changes from hope for survival, to hope for a full recovery, to hope for the child to live a good life, in spite of their illness or injury.”

Caron embraces the journey. “It’s not something I would try to change by giving a blunt reality check, or telling them what the literature says about outcomes. Families need time to slowly absorb the information, and their hope narrative will change over time.”

Caron says there are variations in how children heal from brain injuries, and offering the range of possibilities helps parents. “They want to know recovery can range from worst-case to best-case scenarios, and that there is no crystal ball. They want honesty from their healthcare providers, but the way it’s delivered can either shut them down, or help them hear what’s said.”

Knowing that most parents in their situation experience depression, anxiety, irritability, guilt and blame helps to normalize their feelings. “When I show parents a handout about what we call pediatric medical traumatic stress, 
I often hear a sigh of relief. They’ll say ‘You mean I’m normal?’ They need to be given permission to feel what they feel, and to know that it's okay. Acknowledging your feelings doesn't mean you are giving up hope, or will stop fighting for your child. 

Caron shares tools to help parents calm their symptoms of distress. It may be teaching grounding strategies if they're having flashbacks, to remind them that they aren’t reliving the event. For example, they may learn to name five things they see, hear, feel in their body, and smell, so they know they’re not “back in that nightmare.” They may be taught deep breathing exercises, to visualize a calm place where they feel safe, or to track their emotions in a journal.

Telling their story, in a guided way, is an important part of healing. “I really listen carefully, and with compassion, when families share the details,” Caron says. “They need to reprocess what they’ve been through, otherwise the distress gets locked in the emotional memory of their brain, and can be reactivated when they least expect it.” For example, when they hear a code blue on the unit.

Caron keeps a celebration board in her office where former inpatients have posted graduation pictures. “It helps to cut through some of that despair or fear of hearing the worst-case prognosis. I can talk about how these young people got to know their brain injury, and how it affects them. That these young people had hoped for 100 per cent recovery, but they all had some persisting effects. However, they learned strategies to help them manage those effects, graduate from school and live a good life worth celebrating.”

Acquired disability happens out of the blue, and changes the child the family knew. In this way, it’s different from learning your child has a disability at birth, Caron notes. “These parents had memories and an imagined future with their child that didn’t involve disability. These parents have to mourn the loss of the child as he or she was.”

Brain injury may alter a child’s abilities and personality. “Psychologically or emotionally, the child may feel to the parent like a very different person. Mourning, and letting go of the child that they remember, is really difficult. And outsiders don’t always make it easier.”

That’s because children with brain injury often have an excellent physical recovery, and the lingering effects on thinking, concentration, memory, personality and mood are invisible.

“People will say ‘It’s so great that Johnny’s walking now. He’s in rehab and he’s going to get back to the way he was.’ That creates more distress for families who are grieving inside. They may be told ‘It’s time to move on. Just focus on the positive, and put this behind you.’ But that type of positivity is almost dismissive of the pain they’re going through. Parents may shut down or isolate themselves when their feelings are misunderstood or minimized.”

Sometimes, changes in a child’s abilities, behaviour or emotions may not show up for years, when some people have forgotten that the child even had a brain injury. Often these changes emerge in the teen years, so it's difficult to know if they're due to the brain injury or to adolescence.

Being part of a support community where other parents understand exactly what you’re going through helps. Caron is working with eight parents at Holland Bloorview and the Ontario Brain Injury Association (OBIA)to co-design a four-hour parent workshop that will be launched here in September, and then rolled out across the province. “It’s a place where parents can be comforted, validated and supported, all while learning from one another.”

Traumatic stress in parents tends to be under-identified, Caron says. “There may be a tendency to dismiss the severity of trauma for parents. People may think ‘parents weren’t the ones who went through the traumatic event—it was their child.’ We know that these events have a huge impact on families.”

Clinicians need to remind themselves that they often don’t have the full story of what a parent experienced before arriving here. “If the parent is irritable, or questions staff around what we’re doing, we can’t take it personally. We know from narrative groups with parents that many had to take their child to multiple Emergency rooms before anyone would listen to them. 

“Sometimes, when parents are reactive, or presenting with high stress and anxiety, we need to take the time to hear what their fears are. Learning their back story helps put a different spin on it for us, as clinicians. It’s not about us. It’s about the parent needing to ensure their kid isn’t going to fall through the cracks, like they did before.”

You can register for the OBIA parent education and training program, or, for more information, e-mail Caron at

Thursday, April 11, 2019

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.


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.

Monday, April 1, 2019

Refugee claimant hits roadblocks getting disabled child's care

By Louise Kinross

I'm delighted to introduce the latest in our A Family Like Mine video series.

Meet Ola Atanda and her three kids: Bolu, 15, Abby, 7, and Rahmat Beverly, 19 months, who has cerebral palsy. The family, originally from Nigeria, has been living in a Toronto shelter for almost two years as Ola seeks refugee status. Ola is attending high school with hopes of going on to university to become a social worker.

Ola says her greatest challenge is getting Rahmat’s health needs met. “I’m having great issues with my Ontario Works case worker,” she says. She never wants to approve any of her medical needs.” For example, she wouldn’t approve Rahmat’s feeding machine. “She’s a sick baby, a disabled child diagnosed with about six things…what do you want to see that could make her…eligible?”

Ola says her two boys get good medical care with their interim health card, which covers refugees without status. “I think the reason why I’m having this problem is because she’s a child with special needs.”

Check out all of our A Family Like Mine videos.

Friday, March 29, 2019

Nick turns to teens to help raise reporting of concussions

By Louise Kinross

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

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

BLOOM: How did you get into the field?

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

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

BLOOM: What is a typical day like now?

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

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

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

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

BLOOM: Can you tell me about that?

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

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

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

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

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


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

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

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

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

BLOOM: What is the greatest challenge?

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

BLOOM: What’s the biggest misconception about concussion?

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

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

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

BLOOM: What emotions come with the job?

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

BLOOM: Do you have problems with overworking?

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

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

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

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

Thursday, March 28, 2019

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.