BLOOM: What’s a typical work day for you?
Debbie Sutherland: It starts with getting kids off the busses. It’s a good way to greet them and say good morning and ask how their night or weekend was. Then we do mobility. So we get the kids on bikes or in their walkers and they go all over the school and centre. On Tuesdays I do bussing and 80 minutes of mobility, so I’m walking for 120 minutes. I gave up my gym membership!
BLOOM: Are you in one class?
Debbie Sutherland: I’m in the library this year. In the past, I’ve worked in integrated education and therapy classes, the autism class, the integrated kindergarten and the class for children with complex needs. In the library I now work with all of the kids from junior kindergarten to Grade 12.
BLOOM: What are some of the things you do in the library?
Debbie Sutherland: I check the books in and out and assist the librarian with the classes. We have eight classes of little kids once a week and the older kids come twice a week. With the younger students we work in groups with a white board. So we may download a book onto the board and read a story and get the kids to interact with it by touching the board or hitting a switch. With the older students we’re teaching them how to do research and use Google and the Internet safely. They may be choosing books for projects.
BLOOM: Had you heard about Holland Bloorview through your grandmother’s work here?
Debbie Sutherland: When I was really little my grandmother said she worked at the hospital with the kids who are crippled, like my mom. That’s the term they used then. My mom had polio at 28 months and is now the oldest surviving polio victim in Canada. My grandmother was one of the original marching mothers of the March of Dimes. They used to put something sticky down on the street and people would come and stick dimes on it. She worked at Bloorview for at least 20 years. She was an amazing cook and the people there loved her. She said the kids were like my mom—they couldn’t get around very well or their parents had left them so they had to live there.
BLOOM: How was your mom affected by polio?
Debbie Sutherland: Her right leg is paralyzed and her left arm. She’s now in a wheelchair, but until I was 14 she walked. She had a really bad limp. I remember being teased at school about how my mother walked and how embarrassing it was. My mother told me that when she first started school the other kids would push her down to watch her struggle to get up. She had iron braces on her arm and leg. In the cold, her braces used to snap. One of the doctors told my grandmother that she should go to a special school, so she went to the Wellesley school, which later became Sunnyview.
BLOOM: Did your mom talk to you about disability?
Debbie Sutherland: She talked about having polio. We lived in a side split that wasn’t accessible so she had to go up and down the stairs every day. I remember the first time someone said ‘Your mom is disabled’ it was a shock. I said ‘What do you mean?’ It was always just a part of our life. My mom is the second oldest of seven and when she was young she wanted to ride a bike. The doctor said ‘You can’t.’ So she told her stepfather and he took the brace off her leg and put it in the cement foundation of our house. Then my mom learned to ride a bike and she got around everywhere on this bike.
BLOOM: Did she have a lot of medical interventions?
Debbie Sutherland: They did a lot of experimental surgery on her back. They’d say ‘Wow, that kid is really tough. She made it through and she’s the first one.’ She had humungous scars down her spine and across her knee.
The doctors loved to use her as a teaching tool because they almost never saw polio victims. So it was never just one doctor, but a doctor and a whole bunch of interns watching her. I remember sitting in the waiting room when my mom got her first wheelchair. The doctor told the group that my mother could never have children because her muscles couldn’t hold a pregnancy. She said: ‘You might have wanted to tell me that because the youngest of my five is in the waiting room.’ The doctors were always amazed that she had survived because most kids with polio back then didn’t.
BLOOM: How did you first work in our school?
Debbie Sutherland: I came on a placement to Bloorview at the Leslie site. And when I walked into the school I thought ‘Oh my gosh, this is where I need to be.’
BLOOM: What was your first position?
Debbie Sutherland: I was an EA in a junior kindergarten IET class, so it was the kids’ first experience at school. I loved the kids.
BLOOM: What was most challenging?
Debbie Sutherland: The crying. JK kids cry a lot and for a long time. I think that’s particularly true for kids with disabilities who’ve been sheltered or they’ve been with their parents from day one and never separated. It made me recognize that these parents really needed a break.
Three years ago Shelley Neal and I started a respite program that runs out of our church. It’s four hours of free respite once a month and we take babies to age 13. It’s called rEcess.
BLOOM: How does it work?
Debbie Sutherland: It’s volunteer-driven. We have doctors and nurses and therapists and EAs and teachers and our church youth are involved. We have 67 volunteers currently, and 44 kids registered, with 15 families on a waiting list. It runs on Saturday night. We feed the volunteers and talk about what’s going to happen that night, who the kids are, and they read about the kid they’ll work with. Parents show up at 5:30. We take all of their kids, including the siblings, so the parents get true respite.
The idea is that the parents go out on a date. We want to know where they’re going and make them accountable. The parents are starting to form little groups who go out for dinner together and talk. They’re forming their own community.
BLOOM: Where is the respite held?
Debbie Sutherland: Kingsway Baptist Church in Etobicoke.
BLOOM: What do the kids do?
Debbie Sutherland: We run a full program with stations. There’s a big-muscle adventure, we have a GeoTrax train set that covers the entire floor and is remote controlled. We run an art therapy program, puzzles, games, sensory activities. We change all the kids, put them in PJs to watch a movie so they’re tired and ready for bed by the time their parents come at 9:30. We have all kinds of adapted seating.
BLOOM: What are your hopes for the program in the future?
Debbie Sutherland: We have a big vision. We want to build a complete, full-service respite centre, so that instead of running respite once a month, we can do it every week. The parents will never, ever be charged.
I’m going to school one night a week at the York Entrepreneurial Development Institute to learn how to register our program as a non-profit and make it sustainable. The professors love our program. rEcess has been chosen to be the group project every week and our business model is just about done. We own the property beside the church and we’d like to take down an old, inaccessible house there and build a four-storey building that would house our complete respite centre, including an overnight component.
The professors at York suggested we should rent the second floor out to occupational therapists, physios and doctors at below market rent in exchange for them providing some free services for kids who can’t afford it. Their rent would make the program sustainable.
BLOOM: How do you manage to juggle your work here and your family and the respite program and school?
Debbie Sutherland: Sleep is highly overrated! I work at Bloorview, I tutor once a week and do respite twice a week and I do rEcess. I surround myself with amazing people, like Shelley Neal and Peter Rumney. Peter volunteers almost every time recess runs. He's our medical contact.
BLOOM: What do you get out of your work with kids here and in the respite program?
Debbie Sutherland: This is my niche in life, this is where I love to be. I adore the kids. They wouldn’t have to pay me to do this job. In my work with rEcess I get to see the light come out in other people. I get to empower people to be leaders and to understand awareness and inclusion.
BLOOM: I understand you’re trying to expand the respite program?
Debbie Sutherland: We’re looking for another 40 volunteers to run a second night. We could use nurses and doctors and anyone who wants to volunteer—even if it’s just once a year. We’re also looking or people to sit on our board.