Giving a child the words and confidence to describe disability at a young age is important.
That’s why Grade 1 students at the Bloorview School participate in 20 weekly sessions on self-advocacy before they graduate and move to a community school.
Betty Chan, an occupational therapist who leads the program with teachers, says that parents can adapt it for use at home. Here are 10 steps.
1. Introduce the idea that everyone is different. Begin with a children’s book, such as It’s Okay To Be Different by Todd Parr. “It says it’s okay to be tall, to be short, to make a mistake, and I talk about all of those differences broadly,” Betty says.
2. Ask your child to point out differences between people in your family. “I may do an exercise where I ask two kids to come forward and the other kids explore how they’re different,” Betty says. “‘She’s taller, he’s sitting in a wheelchair, she has long hair.’ It’s very concrete and presented neutrally. This is the way the world is and there’s nothing wrong with it.”
3. Point out disability equipment like wheelchairs, walkers, braces, hearing aids and voice devices. Help your child see that some people use different kinds of equipment and others don’t.
4. Introduce your child’s disability by using a children’s book with a character with a similar condition. For example, Mercer Mayer’s A Very Special Critter is about a character who goes to school using a wheelchair. Your public library is a great resource for books with characters with disabilities.
5. Go to TVOkids' Mark’s Moments and click on an episode that profiles someone with your child’s disability. Mark spends a day at each child’s home, learning about their disability, how they handle negative reactions from others, and how they’d like to be treated. Mark asks all the questions any curious child would want to know, in a matter-of-fact, upbeat way. In addition to modelling ways your child may want to explain difference, this series can be fun to share with friends.
6. Describe your child’s condition in simple terms. “You had an injury in your brain at birth that makes your muscles tight. That makes it hard for you to walk.” Betty says young children like to look at pictures of the brain and basic anatomy to help them understand the impact of a diagnosis.
7. Be honest. Teachers sometimes hear students share incorrect information like “I have a little bit of CP and it might go away when I grow up.” Children need to know that a child with cerebral palsy will always have cerebral palsy.
8. Teach your child the word “frustrated.” It comes in handy when a child explains the benefit of assistive technology. For example, “I get frustrated when I have trouble writing, so I use a computer.”
9. Pretend to be a kid who doesn’t know your child and ask questions. “So, Noah, you’re not walking, what happened to you?” Encourage your child to practise a simple description of their condition and how they do things differently. Think about fears other children may have, and work these into the role play. “Can I catch that from you?” It may be easiest to switch roles first so you play the role of the child with disability and your child pretends to be a curious peer.
10. Get your child to problem-solve situations at home and school by stepping back. “Parents often get a child what they need before they need it,” Betty says, “like placing a walker beside a child when it’s time to go out. You want your child to develop an ability to ask for what he needs or figure out how to get. ‘So it’s time to go home and the other kids are getting their jackets. You’re sitting in your chair waiting for someone to bring you your jacket. What should you do?’”