Mama and Dad

“We have to teach society that there are ways to adapt programs and include kids with physical and cognitive disabilities,” Dr. Rimmer said.

“My mission in life has been something called inclusion,” said Dr. Rimmer, noting that he has an adult daughter with autism who has been excluded from preschool and playdates since she was three. “Doctors need to understand that there are many associated consequences of obesity.”

“Architecture is evangelism.” I heard it said in the context of church buildings. The speaker was making the point that a ramp at the back of the sanctuary might comply with ADA standards, but it isn’t exactly welcoming to individuals in wheelchairs. I’ve been trying to think of an equally pithy way to state this truth for the rest of the world. “Architecture sends a message” doesn’t have quite the same ring to it, but the point stands. The way our buildings, homes, and public spaces are constructed says everything about which people we want to see in those places.

Last week, my mother and I took my kids to our first Boundless playground, a playground intentionally designed to include children with a variety of strengths and abilities. I noticed the swings first—a few that looked the same as every other playground, and two with full back support and harnesses, big enough to hold an elementary-school aged child. Our daughter Penny, age four, has Down syndrome, and I remember the days when she could only spend 60 seconds in a swing before needing to get down. That low muscle tone made it hard to hold her head up, so the enjoyment of swinging was limited by the design of the swing. At this playground, those bright yellow swings stood out as an invitation for any child to swing with abandon.

And then I noticed that the path up to the slide was quite wide. Wide enough, in fact, for a wheelchair. Along the way up, we discovered “stations”—Braille on one plastic board, a xylophone elsewhere, knobs and different textures lining the walls. Penny and William, our 18-month old son, didn’t seem to notice anything different. They just thought it was fun to slide and swing and seesaw, play peekaboo, run and climb and spin.

A few years ago, it took courage for me to take Penny to a playground. I wondered what questions I might get, particularly, “How old is she?” and then a surprised look when I said “Two,” and they watched her take those tentative early steps, watched her tiny body navigate whatever treacherous structure loomed ahead. I worried about older children knocking her down. I wasn’t even sure she would have fun, since she couldn’t run and jump and climb like other kids her age.

Now, Penny can run and jump and climb. There are still things she can’t do, but she’s old enough now that most playgrounds are pretty fun spots. And if I’m honest about it, even in this inclusive setting, a child in a wheelchair would run into some barriers fairly quickly. She could wheel herself to the xylophone, but she couldn’t get all the way to the highest slide without assistance. She couldn’t get up and ride on the bouncy horse or sit on the giant seesaw by herself. Even a “boundless” playground can’t remove all physical limitations.

So for a moment, the cynic in me kicked in. What’s the point of this place? Penny can have fun on most any playground these days. And it would still be tough for some kids to navigate this one. But the purpose of this space goes beyond physical barriers. It tackles social ones, which is more than half the battle. Because what this playground said to me was, You are welcome here. And so is your daughter, who has glasses and a physical therapist and an individualized education plan. Your daughter, who has by now introduced herself to everyone else on the playground with, “Hi, what’s your name? Want to play?”

Architecture sends a message. In this case, thankfully, the message was: Come on in. Play with us. Stay for a while.

Like many little girls, five-year-old twins Katie and Emily Suggitt wanted to dance. But until last year, Katie had to watch her sister at the ballet barre because she has cerebral palsy and can’t walk. Determined to see Katie don her own pair of pink slippers and take her place with the other dancers, mom Sarah – working with Emily’s dance school and one of Katie’s therapists – created an accessible class. Ballerina Dreams at Turning Pointe Academy of Dance in Toronto is for girls with physical disabilities. In addition to the traditional tights, leotards and frilly tutus, some dancers wear leg braces, use canes or walkers, and are assisted by high school students rolling around on stools with wheels. In the photo above, Katie waits backstage to perform at a recital with volunteer Julie Gass. I asked Sarah how she got the program up and running.

Me: What motivated you to start a ballet class for children with disabilities?

Sarah Suggitt-Nixon: Emily started ballet when she was three. At Emily’s first recital we were all in the audience, with Katie on my knee. Katie watched the other girls her age up on the stage and kept pointing to herself saying “I want to do it” and at the time I’m in tears thinking, how are we going to make this happen?

Me: How did you create the class?

Sarah Suggitt-Nixon: Katie was having a therapy session with Barb MacDonald, her occupational therapist, and I asked her “What do you think of this idea of starting a ballet class for kids like Katie?” She said “I think it’s great to find activities that are useful from a therapy perspective, but the kids don’t think it’s therapy.” She offered to volunteer her time. We found a book called Ballerina Dreams about a class in New York for children with cerebral palsy, but in talking to the staff, it sounded like an expensive program to start. It seemed to me that we should try to find a school in Toronto that was already established and would entertain a class for these girls, so I called the director of Emily’s school at Turning Pointe. She said: “Wow, I love that idea. I’d like to figure out how to make it happen.”

Me: How does the class work?

Sarah Suggitt-Nixon: There are about six girls, aged five and six. The ballet teacher took the typical program she does and adapted it a little. Turning Pointe helped us find high-school student volunteers to be one-on-one helpers with each child. The volunteers have stools on wheels and in Katie’s case one holds her waist to help her stand up. They do a lot of coaching to remind her to reach her arms straight up over her head, or not to cross her feet or to lift her foot up. They work at the barre and work with colourful scarves to do the arm movements. Katie doesn’t use her voice device in the class, but Barb printed off some sheets so she could pick colours for different games they do in a circle. They use the same moves and music that they use in the classes for typically-developing children.

Me: How did they know how to adapt the program for each child?

Sarah Suggitt-Nixon: The occupational therapist put together a two-pager for parents to fill out to give a picture of their diagnosis and relevant information on how their little dancer moves and she met them on the first day and worked with the student volunteers. We didn’t do a lot of preparation as far as meeting with the dancers or volunteers up front. We told them “If you want to come and be a dancer, come, and if you want to come and be a volunteer, great,” and then we figured it out from there.

Me: What impact has the class had on Katie?

Sarah Suggitt-Nixon: She loves it. Saturday mornings in our house are ballet. Emily goes at 9:15 and Katie goes at 11:15. For all the girls, the biggest highlight at the beginning was putting on the outfit. Katie gets to be like every other girl. At their first recital, the director did an amazing job of not making the Ballerina Dreams class any different. She didn’t give a preamble to the class. It was just: “next up is Ballerina Dreams” and out they came in their walkers or with their volunteer. There wasn’t a dry eye in the house. After the recital they had a waiting list of high school students wanting to volunteer.

Me: What have you heard from parents of other kids in the class?

Sarah Suggitt-Nixon: “I can’t believe my little girl with special needs is doing a ballet class like her sisters or friends.” One mom told me she had been looking for this kind of program for two years. One of the girls who started in November is now taking steps, where she wasn’t before ballet. They’re ordering her a walker to use in addition to her wheelchair.

Me: How have other parents and dancers responded?

Sarah Suggitt-Nixon: You can peek through the window at the class and a lot of people stop by to watch. I heard one teenager say to her mom: “This is the class I was telling you about that I want to volunteer in. When they get more dancers, I’m next on the list to volunteer.” For many of the student volunteers it’s the first time they’ve been involved with kids with special needs and it normalizes these kids for them. They’re not different or weird. One mother said her daughter who’s going to university is now interested in looking into occupational or physical therapy as a career after working with these kids. There haven’t been any negative reactions.

Me: What was the greatest challenge in starting the class?

Sarah Suggitt-Nixon: You know what, there wasn’t a big challenge! The studio is accessible and there are no stairs. I let families in the Bloorview School know about it, so we had dancers lined up and ready to go. Turning Pointe needed to schedule the time slot and teacher and get the volunteers. But I was very pleased at how receptive everyone was.

Ballerina Dreams was profiled in this Toronto Star article last weekend. Check out the online video. Photo above by Jamie MacDonald.

This post is a mixed bag.

Saturday was the first night we went trick-or-treating with Ben in a wheelchair. We used to pull him around in a wagon (because he’s tiny), and he would hobble up the stairs to people’s doors or we would carry him on our backs.

But this year it made sense to use his new wheelchair, which he now uses whenever he’s out.

It was an eye-opener to realize how many homes were inaccessible, with two to three steps up to the path, and then numerous steps up to the door. Our house is probably the worst: we live on a steep hill and have about 30 steps up to our house (we bought the house when I was pregnant with Ben).

Most people didn’t come out of their homes to hand out candy. They waited until the kids got up to the door and knocked. So there were at least a couple of streets where we were forced to roll by every single house, without stopping, because we couldn’t make it to the door.

I’ve always thought of our neighbourhood as being welcoming and friendly. But it’s not from a wheelchair.

Check out this new web site about Fragile X, developed by a non-profit group of parents and professionals called the Fragile X Research Foundation of Canada. The group says this most common cause of inherited developmental disability lacks awareness and research funding. I hope we can interview one of the parents in the future.

And this new collection of stories by parents of children with disabilities looks promising: My baby rides the short bus: The unabashedly human experience of raising children with disabilities. It includes a piece by our guest blogger Elizabeth Aquino.