Friday bonus watch

This short film about living with a dad who has cerebral palsy, uses a wheelchair, and communicates with a pointer and letterboard, is now available on YouTube. My Dad Matthew is seen through the eyes of Elijah, who was then 14, and considers his father Matthew “a pretty normal dad.” 

Want to hear directly from Matthew, who's a professor in disability studies at Northern Arizona University? Read our interview with him. Happy Friday!

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How to keep in touch

Do you want to read and watch family stories about parenting children with disabilities? And hear about what it's like to work in children's rehab? Plus get links to mainstream disability news and opinion pieces?  

In addition to checking the blog, you can follow BLOOM on Facebook.

Sign up to receive our monthly e-letter in your inbox (includes shout-outs to people and groups making the world a more inclusive place and our book shelf).

And check out eight episodes of our video series called A Family Like Mine, which features diverse parents raising children with a wide range of disabilities.

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'We Carry Kevan' aims to inspire a new model of inclusive travel

By Louise Kinross

Kevan Chandler paid a visit to Holland Bloorview last week on a tour to promote his new book We Carry Kevan: Six friends. Three countries. No wheelchair.

We’ve interviewed Kevan twice. Once about his 2016 trip to Europe with friends who carried him in a modified backpack, and once as he planned a similar trip last year to China, where he visited care centres that support orphans with disabilities. Kevan lives in Fort Wayne, Indiana, has spinal muscular atrophy, and weighs about 65 lbs. It was awesome to meet Kevan in person.

BLOOM: What is the purpose of your new book?

Kevan Chandler: The new book chronicles our adventures in Europe and then China, and everything building up to that, with a little bit of autobiographical information about my childhood. It’s a travel memoir of our journey so far, and within that it gives a lot of insights on my perspective about disability and our friendships and how that all ties together.

BLOOM: What message do you hope readers take away?

Kevan Chandler: I think for folks with disabilities, it’s an encouragement to see someone with a disability living a full life, and in such a way that people can read it and say ‘Oh, yea it is possible. I can do that, too, in my own way. Our story is about how we figured out how to do things. We’re not telling people how, but saying you can figure it out with the people around you.

For the able-bodied community, the book is an insight into a world they may not be familiar with, and an encouragement to plug into that world. It’s an ice-breaker.

BLOOM: We spoke with you before you went to China. Now that you’ve actually been there, what was the greatest challenge?

Kevan Chandler: There were a lot of challenges. We went to three cities and we had three very dynamically different experiences. Going into each city, we’d get settled, fall in love with the place and have to leave. We spent most of our time in care centres for orphans with disabilities—really getting to know the children and staff and very quickly building some life-long relationships. It was surprising how you can be somewhere for only four to five days and feel homesick for that when you leave.

BLOOM: I guess you were immersed in the children’s lives.

Kevan Chandler: To see that 24-7 life of caring and loving for these kids, and being in that community, yes, we were immersed. And there was a physical toll as well. The first city we were in was a village in the middle of nowhere. The conditions were more difficult there. The other care centres were a bit more Western—spectacular, clean and well-equipped.

BLOOM: What did you do there?

Kevan Chandler: We rolled around on the floor and played with them and held them and cuddled them and talked with them. They loved having us there. Most of the nannies and caregivers are women, so it took a little time for them to get used to a group of guys.

There was a language barrier and a lot of the children were non-verbal, so there wasn’t a lot of communicating with words. At first the guys brought me in and set me in my backpack with the kids, but the kids didn’t know what to think of the backpack. I decided it was better to lay me on the floor with them: ‘I’m here, I look like you.’ We talked with them and made noises and rolled around.

BLOOM: Did you take any of your backpacks with you?

Kevan Chandler: We took two to donate. The staff would bring a child into the room to meet me, and one of the guys would get me set up in my backpack while the child watched. If the child responded well, we’d pull out the extra backpack. We’ve been working with Deuter to develop an adapted design. When we get the first order in this summer we’re sending 10 to the care centres, with a plan to send more.

BLOOM: What was the greatest joy of the trip?

Kevan Chandler: Being with the kids was the greatest joy, and getting to experience it with my friends. You can imagine the heart of these guys to care for me like they do, so I can travel with them. We saw everything from the care centres to the Great Wall (see photo above) and the Shaolin temple.

BLOOM: Isn’t there a lot of stigma towards disability in China?

Kevan Chandler: Yes. People with disabilities are hidden away by their families or the system. You don’t see a lot of people with disabilities. We saw one lady in a wheelchair in the market, and otherwise never saw anyone with disabilities in our three weeks there.

Something I was surprised by was that when we would walk through the market or the city, people—especially of the older generation—would stop and give us the thumbs up and shake the hand of whoever was carrying me. They seemed to have a lot of respect and appreciation for what the guys were doing.

We knew there would be a language and some cultural barriers. But we hoped that the spectacle of one guy carrying around another guy would be a visual that would inspire and encourage people.

BLOOM: How often do your friends switch off with carrying you?

Kevan Chandkler: We try to do a 45-minute switch, that way no one gets completely worn out. Something really neat was that we had other people, outside of our team, carry me as well. At the care centres, a couple of the workers were big guys who said they’d like to help out, so they took turns when we were in the market. Our translator, who didn’t come to carry, also carried me as well. We had only brought three carriers, so it was cool to incorporate more people.

BLOOM: You have a non-profit called We Carry Kevan. What is the mission?

Kevan Chandler: Our mission is to redefine accessibility as a cooperative effort—people helping people, and getting involved with each other’s lives. Right now our main focus is implementing the backpack, and encouraging people who can, to use it. It will be available this summer and is a one-size that fits up to 70 lbs.

BLOOM: What does it cost?

Kevan Chandler: It’s US$375. It’s completely adjustable and versatile for different sizes and needs. For the past two years we’ve been developing it with Deuter. We‘ll work with a family to customize it to each individual. Managing that, and with my book coming out, has been a full-time job.

BLOOM: What makes your travel unique is the participation of really close friends. How can that work for kids who don’t have friends?

Kevan Chandler: I talked to my mom about it recently, and she said when I was diagnosed she and my dad decided they would raise us as normal as possible (my sister also has spinal muscular atrophy). They knew that would take a lot more work, but they wanted us to be involved in the able-bodied community.

What they ended up doing was that we were out in the world, and we also invited the world in. That introduced that idea of community. It normalized for our community the idea that my sister and I, we had needs, and people could help out. It taught us not just to ask, but to invite people into that. It also taught our immediate community how to respond. As I got older, it became more my responsibility. It’s going to be uncomfortable, but you have to put yourself out there. It’s worth a try. Everyone may not get it. But the people who do get it are going to be awesome.

You can follow Kevan at We Carry Kevan. The group is working on organizing international shipping for its adapted backpacks. If you have any questions, please e-mail at wecarrykevan@gmail.com. The photo below was taken at one of the care centres in China where kids got to try out the adapted backpack. Check out Kevan's Ted Talk.

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'I'm trans because that's who I am'

By Louise Kinross

Logan Wong is known for his stylish bow ties. But in this photo, he's wearing a shirt with the colours of the transgender flag: blue and pink, the traditional colours for boys and girls, and white, representing people who are intersex, transitioning or a neutral or undefined gender. Logan is a transgender man who has cerebral palsy and grew up receiving services here. He's also the co-chair of Holland Bloorview’s youth advisory, and works as a host to inpatients in our teen lounge. He’s going into his fourth year of social work at Ryerson University. We talked about his experiences and how Holland Bloorview can better support young adults like him.

BLOOM: What does it mean to be transgender?

Logan Wong: It’s when the gender you’re assigned at birth doesn’t match with what you believe to be your gender. Trans is an umbrella. It can mean you’re a guy, you’re a woman, or you’re both. There are new labels coming up every day.

BLOOM: How did you recognize you were transgender?

Logan Wong: I came out publicly last September. But I’ve known I was trans since I was seven. When I was that age I presented as a male, and I was really self-conscious about my body. I don’t think anyone—including me—recognized it as being trans at the time. I thought I liked boy stuff, and I wouldn’t leave the house in a dress.

I have two older brothers. We have a home video of my birthday party when my parents gave me a Barbie. I threw it on the floor and started playing with my brothers’ hot wheels.

My parents recognized how terrible I felt about myself, and how much of a struggle it was for me. And my mom got better at buying gender neutral clothes and clothes that weren’t pink.

BLOOM: What’s been the greatest challenge?

Logan Wong: Definitely finding accessible and trans-friendly health-care, and my name change stuff and government forms. Changing everything from my name on my insurance to my name at school are examples.

I’m lucky to have finally found a doctor that is really educated in both transgender stuff and disability—which is really rare. I go to Parkdale Community Health Centre, and I had to transfer my whole primary care over there to be able to access testosterone. Before that, when I saw my regular family doctor, they were going to refer me to a hormone specialist. But there was a year wait list.

BLOOM: What’s been the greatest joy?

Logan Wong: How much pride I have, and how much I can use my experience, both as trans and having a disability, as representation for both communities at the same time. I really appreciate that opportunity.

BLOOM: What advice would you give parents whose disabled child is questioning their gender?

Logan Wong: I would say listen to what they have to say about themselves. Don’t make assumptions about what they’re thinking. Let them express themselves the way they want to.

BLOOM: Did having a disability make it easier or harder to accept your transgender identity?

Logan Wong: In some aspects it made it easier. I’m in a wheelchair and no one expects me to stand up and pee. So I don’t have to worry about facing harassment in the bathroom. I usually use a single stall bathroom.

Growing up, my life didn’t revolve around the fact that I had a disability. My parents believed that my life shouldn’t just be about therapy. That made me willing to explore other parts of my life and identity, so it made it easier for me to recognize who I am.

BLOOM: Is there anything about having a disability that made being transgender harder?

Logan Wong: Making people realize that I’m not trans because I have a disability, or because of other things that happened in my life. I’m not trans because I’m oppressed by other things, or because I’m attention-seeking. I’m trans because that’s who I am.

BLOOM: How does the disability community view transgender people?

Logan Wong: I definitely find more community within the trans and queer community. I do associate with the disabled community, but I’ve found able-bodied friends who are trans and queer are way more accepting of my identity. I think it goes back to some people thinking that I’m trans because I want attention.

I do feel I’m more welcomed in the trans and queer community. They don’t see my disability as a thing. It’s part of my identity, of course, but they don’t emphasize it as much as it’s focused on in the disability community.

Do I necessarily tell new people with disabilities that I meet that I’m trans? Not necessarily.

BLOOM: What would you like our staff to know about how they can best work with youth who are transgender?

Logan Wong: Ask them what their name is, and what pronouns they use. It’s very simple. Recognize that the documents you get might not have the name that they prefer on it. Don’t take the paper as the most important thing. Value what they say.

BLOOM: Have you ever received health care that wasn’t respectful or affirming of who you are?

Logan Wong: I’ve only had one experience, and it was recent. My cerebral palsy specialist at an adult hospital was blatantly transphobic.

BLOOM: In what way?

Logan Wong: He refused to refer to me with my now legal name, because he knew me before. I’ve chosen to not go to that person since. I called and explained that I was transferring to another specialist, because I don’t want this happening to another person.

BLOOM: What could we do at Holland Bloorview to better support youth who are gay, transgender or bisexual?

Logan Wong: I like the steps the equity, diversity and inclusion committee is taking.

BLOOM: Are you on that committee?

Logan Wong: Yes. They’ve encouraged staff to put their pronouns in their e-mail signature, which is really important, and created gender-neutral bathrooms. Instead of using mom and dad, just say parents. We have to think about it, not only in terms of children and youth, but the parents who are potentially trans.

BLOOM: What about creating some kind of peer support here for clients who are transgender?

Logan Wong: I think support groups, with the right intention, can always be a good opportunity to express the values of Holland Bloorview.

BLOOM: Why did you decide to be a youth leader?

Logan Wong: I decided to become a youth leader before I publicly transitioned. I wanted a platform to advocate for people with disabilities, and specifically youth voices. I feel we don’t hear enough from youth about their opinions on what’s happening in the disability community, or politics, or the world.

BLOOM: What are your hopes for the future?

Logan Wong: I’m hoping to be a social worker. I haven’t confirmed it yet, but I’m hoping my placement will be at the Ronald McDonald House. I’ve gained a lot of clinical experience in my work here, and I’d like to continue that in another space.

After I graduate I’m thinking about master’s programs, both social work and women and gender studies.

In Toronto, there are lots of trans-specific supports at The 519. 

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In nursing 'everything good comes from the heart'

By Louise Kinross

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

BLOOM: How did you get into this field?

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

BLOOM: How did you choose nursing?

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

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

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

BLOOM: What is it like working with this population?

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

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

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

BLOOM: What’s most challenging about this work?

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

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

BLOOM: What are the joys?

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

BLOOM: What emotions come with the job?

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

BLOOM: How do you manage those emotions?

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

BLOOM: What have you learned from families?

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

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

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

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

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

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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.

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

By Louise Kinross

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

BLOOM: How did you get into this field?

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

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

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

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

BLOOM: What is a typical day on reception like?

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

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

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

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

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

BLOOM: What are the joys of the job?

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

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

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

BLOOM: What are the greatest challenges?

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

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

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

BLOOM: What qualities does someone need in your role?

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

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

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

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

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

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

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

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

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

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

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

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Bobbi finds her dream job in health records

By Louise Kinross

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

BLOOM: How did you get into this field?

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

BLOOM: What is a typical day like here?

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

BLOOM: What is it like to transcribe reports?

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

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

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

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

BLOOM: What are the joys of your job?

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

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

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

Bobbi Champagne: What are the challenges?

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

BLOOM: What can help staff make the leap?

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

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

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

BLOOM: So you go back to doctors to clarify?

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

BLOOM: What have you learned about families?

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

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

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

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

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

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

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

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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.”

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