Wednesday, January 5, 2011

My Special Friend Sarah - Thoughts on Cerebral Palsy Awareness

On Monday afternoon, I had the pleasure of going figure skating with a little girl I've been tutoring for almost four years now.

For the sake of privacy, I won't use her real name on this blog post. Today, let's just call her Sarah.

I couldn't wait to see Sarah while I was home for the holidays. Moving to Kingston has left her without a tutor (sob), and I wanted to spend time with her before I left.

And so, we headed to a local skating rink, played tag-you're-it! around the ice, and took a gazillion pictures. Because anyone who knows me well is familiar with my penchant for taking pictures. All. The. Time. You can always depend on me to whip out my camera for a photo-op at any occasion.

But, friends, there's something you should know.

My little friend Sarah is a tad different from other girls her age. I met her when I was nineteen, working as a camap counsellor for a summer camp catering to children with special needs and disabilities.

Sarah can't speak or walk on her own. Actually, she can barely move on her own. She is completely confined to her wheelchair unless someone moves her, and she can't carry on a conversation with words. She has to depend on others to eat, drink, write. She depends on others to feed her, needs 100% support in the bathroom. She can't communicate with others unless she uses certain electronics with programmed sentences and words to get her thoughts across.

Sarah has suffered from cerebral palsy since she was a young girl, affecting her physical development and, by association, her motor skills.

But while Sarah is limited physically, I refuse to believe that she isn't capable of learning or being social. After tutoring her for four years, I know she's a smart girl. I know she can read. I know she's capable of learning math. I know she's interested in learning Science, French, Geography, History, and other subjects. She's an incredibly intelligent girl.

And yet her brilliance is rarely recognized by her teachers, many who have long since given up on her as an impossible case. A little girl too limited physically to ever be treated as a regular student. Instead, they leave her with little "art projects" all day, too impatient to provide her with actual work.

But Sarah isn't as different as others think she is. She's just like any other little girl. She loves Hannah Monatana. She loves the colour pink. She loves wearing dresses, painting, watching movies. She loves music and parties. She loves and wants friends.

Last year, I remember asking her how her first day of school went, and she refused to smile. Instead, a single tear rolled down her cheek. Without words, I knew exactly how she felt. Her mother told me later that no one approached her at recces, and didn't make many friends on her first day.

I've grown to love Sarah and her family over the years I've spent tutoring her. I've tutored her brother, and spent time with her mother, gradually learning about the impact of disabilities on the families of these children. I've watched her mother cry in grief over the treatment of her daughter. I've watched her brother shrink back to the sidelines, allowing all the attention to rest on his sister. I've watched them discuss their financial circumstances. Sarah's situation requires her to have several expensive wheelchairs and equipment. Yet much of it isn't subsidized.

It breaks my heart to see her treated so negatively by her teachers and peers. Because while she's a little different physically, she shouldn't be treated like a social pariah.

My friends, if there's anything this story should tell you, it's this. I want to point out that there are a number of little girls and boys just like Sarah, desiring to be understood. And, most importantly, desiring to have friends. People who are aware that there are many children limited physically who just wish someone would spend some time with them. To chat about school, about the latest movies, the latest fashion trends.

We can't change the world. Nor can we magically give Sarah a voice or the ability to walk. Many of us don't have the credentials to research a cure for cerebral palsy. But we can be aware of Sarah's desire to be loved and, most importantly, accepted. And we have the capability to be what children like Sarah desire the most: to be their friends and to understand them beyond how they look physically.

For more information about becoming a volunteer for children with intellectual disabilities, contact your local Community Living location. They always need volunteers! :)

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not healing, not curing. That is a friend who cares."
- Henri Nouwen

"All men dream, but not equally. Those who dream by night in the dusty recesses of their minds, wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act on their dreams with open eyes, to make them possible."
- T. E. Lawrence

1 comment:

  1. Sarah sounds like a very sweet and intelligent girl. She is lucky to have you to understand her! If you are interested (or you think her family would find this helpful), check out the Cerebral Palsy Family Network. It's a site full of resources for all things CP. Thanks for posting and helping raise awareness!