Samantha is the new ambassador for Holland Bloorview's alumni network
By Louise Kinross
Samantha Alfaro is a fixture at Holland Bloorview. She was a student in our Bloorview School and grew up seeing doctors and therapists here. She learned to swim here, did years of fit-and-flex classes and worked as a student. This year she's chair of our youth advisory council. So it's not surprising that Samantha recently took on the role of Coordinator, Community Engagement for our Alumni Network. "I've always wanted to stay connected with a place that I attribute a lot of my success to," Samantha says. "The joy of my new job is being able to have conversations with former clients and families and creating a space for them to connect with each other." We spoke about Samantha's new role and history here.
BLOOM: What are your earliest memories of Holland Bloorview?
Samantha Alfaro: I remember people. I went to the Bloorview School so I remember a lot of teachers. I remember Paul, who I still see periodically throughout the hospital. I remember you walking around. I also did swimming for a few years and remember Christina and still see her. It's always been a warm place for me. Dr. Milo-Manson was one of my doctors for a long time and I still see her. Everybody here has always been very positive and it's always been a good place for me.
BLOOM: What was the greatest challenge for you growing up with a disability?
Samantha Alfaro: I think my greatest challenge speaks a lot to why I want to stay connected here. After I left the Bloorview School at age eight I was the only person in my class with a disability, and one of only two students in my school. I was surrounded by able-bodied people. I'm pretty comfortable around different people, but sometimes it was hard having to explain things.
I had a couple of friends in elementary school and sometimes I would be afraid to say 'I can't do that' or 'I'll hang back a bit.' If we were going for a walk around a mall I'd have to explain that I needed to take a break for 15 minutes and sit on a bench, so I could get more energy to walk again. I worried that maybe they wouldn't want to hang out with me or invite me places, because they had to worry about me and whether I would fall or keep up. They said they were fine with it, but I didn't want to hold anyone back.
Even though most people were accepting, as the only person with a physical disability in my class there were times when I felt singled out. Sometimes we had free time at lunch and people would go to the library, but it was up the stairs. The school didn't have an elevator at the time and I didn't have permission, for safety reasons, to use the stairs on my own.
It got better in Grade 7 and 8 because I realized I could talk for myself. I remember I was put in special-ed for one class because I found it hard to understand math, but it was in a portable about 10 steps outside the school. So I had to wait for an educational assistant to take me there. If they were busy, I'd have to wait for 10-15 minutes to be walked over, so I'd miss the first part of what my teacher was teaching. In the winter, if there was snow or ice, I knew I needed the help. But if it was fall and the ground was clear, I could go by myself.
So I talked to the EA and she said it was okay to go on my own. I had to get the confidence to say: 'This is how I need to and can do this.' I practised a script in my head of what I was going to say and how I'd say it, because I wanted to make sure I was clear and that I didn't stumble on words. I still do this to this day. I used to practise with my parents and then I'd say it 10 times in my head. My parents always encouraged me to speak for myself.
BLOOM: For other kids who may be earlier in the journey, and perhaps are leaving school here to go to a regular community school, what advice would you give?
Samantha Alfaro: One thing I distinctly remember is going to the school in advance. I went with my dad and they took me all around the school to show me what they could offer me, and so I could get a feel of the place and knew the layout. I got to meet the staff and principal and they developed a rapport with me and my family. That helped a lot, so it wasn't a completely new place and I could get used to the surroundings.
A doctor here always asked me if I knew how to explain my disability and how it affects me so I learned how to explain it in layman's terms. I'd say 'My legs don't work the same way yours do.' That helped when I went to a community school.
BLOOM: So you didn't get into sharing any complicated names?
Samantha Alfaro: No. When you're eight or 10, if you say 'I have cerebral palsy,' everyone says 'What's that?' Just stick with how it affects you. I always found different ways to take part in games and activities. For example, if my friends were skipping rope at recess, I couldn't skip rope, but I could turn the rope. So I'd figure out ways to be involved and tell my classmates 'I can't do this, but I can do that,' and they were fine with it. I wanted people to know I could still hang out with them, even if I needed some modifications.
BLOOM: If you could change one thing about children's rehab, what would it be?
Samantha Alfaro: I had a pretty good experience here and I don't think anything was missing. I got what I needed. The adult healthcare system is different from pediatric care. What has been more difficult is adult care. From what I've experienced, it's more one-off appointments and it's not cohesive and comprehensive. I go to the LifeSpan clinic at Toronto Rehab now, because I know they have experience with disability, and I also have a family doctor. When I've seen general doctors and mentioned cerebral palsy, they don't know about it.
BLOOM: Why did you want to work on our alumni network?
Samantha Alfaro: I used the network as a client before I saw the job posting for it. The alumni network is a great new venture the hospital has created and I'm interested in it because it gives me and others an opportunity to develop a community of people with disabilities. Most of my friends and family members, and the people I interact with on a daily basis, don't have disabilities. So for me, the alumni network is a great way to connect with past clients and learn about new programs and resources and things that are happening here or in the community that I may not hear about otherwise.
BLOOM: How would you describe the network to someone who isn't familiar with it?
Samantha Alfaro: It's a social platform specifically for previous clients and their families who want to stay connected to Holland Bloorview, meet new people, learn about events and engage in conversation that you may not have every day. It's a great way to get advice from others who have similar experiences. We have an alumni buddy feature where you can video chat with other alumni to get more personalized advice. We have over 100 members and you can follow the main feed or join groups for youth or family leaders or parents and caregivers. It's the first pediatric network of its kind in Canada.
BLOOM: Do you have a vision for how you'd like to see the network grow?
Samantha Alfaro: I want it to be the go-to place for alumni of the hospital. As a former client I know how special this place is.
You can register to join Holland Bloorview's Alumni Network here.
