Provisions for a Unique Childhood

In grade five, my teacher instructed the class to do an organ project and presentation for our science class. One by one, he asked each us which organ we wanted to do. After what seemed like forever, it was finally my turn to share my organ choice: my shunt. It worked out that there were about two or three kids per organ, but of course, I was the only one doing the shunt.

My teacher's eyes widened when I told him my choice. My mom had informed him about my shunt, so he could have told the class what it was, but instead he asked me to. I think I said "sure." Then I felt self conscious confessing to my classmates that I had a plastic tube in my body that went from my brain to my belly to drain excess cerebrospinal fluid that had accumulated when I was in the womb. Will they think this is gross? Will they treat me like I'm "special"?

This instance was the first time I can remember telling people about my shunt, but I always suspected they knew something was different about me. I often had doctor's appointments, was shadowed in classes and interviewed by people from the TDSB or Bloorview Macmillan (now Bloorview Kids Rehab) at least once a year, was excused from certain gym and track and field activities, stayed inside at recess on icy days and needed to take an alternate, less busy stairwell. My mom demanded that school buses have a seat belt for me; for years I took reduced walking routes (or didn't go at all) to Track and Field day at the arena and the Terry Fox Walk. I also waddled a bit as I walked.

Sometime, either in high school or university, I found out that I was also born with a Dandy Walker Variant, which explained many of these provisions better than my shunt because it is a mild malformation of the cerebellum. There are other aspects to the syndrome, but they haven't really affected me. I'm not sure why I didn't know about the DWV earlier. I'd been diagnosed with it either in utero or shortly after. I just remember feeling happy when I found out because it explained my co-ordination and balance difficulties. I'd always assumed these challenges were caused by the shunt, but the Dandy Walker Variant actually caused hydrocephalus, the condition that made the shunt necessary.

I've known for years now, that the Dandy Walker was the reason I had appointments at school to assess my handwriting fatigue and difficulty on stairs. I also know that the Dandy Walker made the icy yard and pavement dangerous for me because I didn't have good balance and co-ordination, but it was also dangerous because if I had fallen on my abdomen or hit my head, I could have injured the shunt. This potentially would have been a life threatening situation that would require surgery. I went to those routine doctor's appointments to make sure the shunt was working properly.

I didn't know any of this in grade five. I just followed the restrictions and accommodations that had been set for me. Perhaps I only knew about the shunt because the doctors examined it at my appointments. Since it's right underneath the skin, I can touch it. My challenges, assessments and appointments were normal for me. I hadn't known life without my issues, so I had nothing to compare my experiences to. I didn't get upset about being different from the other kids; I just enjoyed getting to leave class and spend time alone with my mom. I wasn't fond of cold recesses or high jump anyway. If I'd been bullied or wanted to be like all of the other kids, maybe my issues would have bothered me.

I'm sure my mother, Bloorview, Sick Kids and the the TDSB all felt it necessary to check up on kids like me and provide them with accommodations -- and it probably was -- but now it bothers me that they all expected I would need help. It makes me feel like maybe all of my provisions conditioned my teachers and classmates to think I was less capable of doing things.