Bloorview school: 'best place I've been to in my life'

By Louise Kinross

Years ago I knew Osmond Shen as a student in our Bloorview School. He’s now 19 and in Grade 12 and we caught up in an e-mail interview. In the photo above in Spiral Garden, he appears with his seven-year-old brother Edmond.

BLOOM: What disability do you have and how does it affect your life?

Osmond Shen: I have cerebral palsy. It causes severe limitations in motor function, speech and communication, along with limitations in accessibility to some places.

BLOOM: What is one place you wish you could go that you can’t?

Osmond Shen: I wish I could go to Shanghai with my parents when they travel back home. But there is no option for accommodating my wheelchair on the airplane.

BLOOM: You were in our integrated education and therapy program in our school. What was good about the program?

Osmond Shen: I was in the IET for four years. One thing that was good was that there were swimming classes I was able to attend with my mom. I also enjoyed having the Spiral Garden program and taking part in all the outdoorsy activities.

Within the IET program I had the opportunity to walk around the building with special equipment. Once a week we had a mobility class and with the help of therapists we would individually walk around the building to different word wall stations as both a literacy and physical activity. That was something that I found challenging but fun at the same time.

BLOOM: Was there anything you didn’t like about the program?

Osmond Shen: Everything was great about this program. I just wish I could stay there longer.

BLOOM: Why?

Osmond Shen: Because I liked the place and the facility is great. That was the best place I’ve ever been to in my life. The IET program in particular helps us to reach our goals through gradual progression. For other schools there isn’t as much progress for students compared to the IET program.

BLOOM: How do you get your thoughts down onto the computer?

Osmond Shen: I get assistance from other people who type down my thoughts for me. They record down as I express myself.

BLOOM: Is speech your primary way of communicating?

Osmond Shen: For people who don’t understand my speech, I have a communication display. It works by using colour-coded boxes that have some text within them that easily allows me to communicate the word by using respective colours. But the main form of communication I use in case someone finds my speech difficult is to have a friend help translate to that person.

BLOOM: How does communication affect your friendships?

Osmond Shen: With my disability it’s rather difficult to try to get to know someone because it requires a lot of patience to understand my speech. Not everyone is able to communicate effectively with me. The friendships that I do have are quite strong, since both of us are highly patient and understanding of one another.

BLOOM: It must be frustrating when some people aren’t patient enough to get used to your speech.

Osmond Shen: I’m fairly used to those situations and what I tend to do is keep on repeating myself until they understand what I’m trying to communicate.

BLOOM: Where do you go to school now?

Osmond Shen: I’m in Sir William Osler High and I am in the special education class program.

BLOOM: What are your favourite things to do in life?

Osmond Shen: One of my favourite hobbies is to do various things on the computer. I’m quite tech savvy and have a wide selection of different apps that I enjoy working with. I also like to do online shopping, playing video games, browsing the Internet. I also have a blog about myself that I enjoy developing.

BLOOM: What are some of the apps you like using?

Osmond Shen: Aside from typical Internet browsers I frequently use Windows Live mail to organize both my main e-mails into one platform. I also use the iTunes application on a regular basis to import new songs onto my iPod touch. I enjoy listening to pop music. My favourite band is Abba.

BLOOM: What has been the greatest challenge growing up with your disability?

Osmond Shen: My biggest challenge is communicating with people. One other significant challenge is keeping myself calm and relaxed since I tend to tense up my muscles a lot, especially when I’m anxious about something.

BLOOM: What advice would you give a younger child with a similar disability?

Osmond Shen: The main advice I would give others with severe cerebral palsy is to consider getting a medical pump implant that releases medication which greatly helps my condition. The pump is also very convenient, high tech and actually very cool. I would highly recommend this as an option to discuss with your doctor.

BLOOM: Is this the baclofen pump?

Osmond Shen: Yes, I use the baclofen pump to relax my muscles.

BLOOM: If you could change something about how doctors work with you, what would it be?

Osmond Shen: Not all medical clinics are entirely knowledgeable or equipped for people with my condition. I am somewhat limited with the places I can go to receive care. Aside from that, I’ve always been highly satisfied with the way health professionals work with me and my family.

BLOOM: What have you learned from having a disability?

Osmond Shen: I have learned that having a disability makes me unique in the same way that everybody else is unique. Having a disability has allowed me to have a unique perspective on life that others wouldn’t be able to see. I’ve also learned that even though I have a physical disability I’m still able to have relationships with my family and friends. In addition to the awesome perk of getting to cut through most line-ups.

BLOOM: What would you like to do as an adult?

Osmond Shen: I would like to volunteer in Holland Bloorview to return the services that I received over the years for me and my families.

BLOOM: What type of volunteer work would you like to do?

Osmond Shen: I’d like to greet people and act as a guide since I’m quite familiar with the place.