Wednesday, February 13, 2008

My Story - Living With Congenital CMV

The post below was written by my mom. The Baylor College of Medicine also asked me to write about my experiences living with my disabilities, and this is the article I sent them.

I guess I had a pretty typical childhood. My brother, Peter, is 4 ½ years older than me, and I went through a phase of wanting to do whatever he did. That’s why I played several years of Little League baseball (mostly T-Ball), until it became very clear that sports were not my thing. I was in Brownies for a year, because Peter was in Cub Scouts. That also didn’t last. It kind of took a while for me to realize that trying to fit in with “normal” kids wasn’t going to work. I just had to accept the hand I was dealt, and try to deal with it as best I could.

School was always a challenge for me. Not so much academically, although I struggled in math quite a bit. The worst for me was definitely gym. It was always frustrating to see other kids do things like make a jump-shot, or hit a home run, and think, “Why can’t I do that?” But luckily, I found my strengths in the classroom, and that helped even things out. I was always very good in laugage arts and reading. So whenever I would feel tempted to get discouraged over some of the things I couldn’t do, I would remind myself that I had talents, just in other areas.

In first grade, I was put in a Special Ed. class for most of the day, and I would only join my peers for things like art, music and gym. I don’t think I really should have been kept seperate from the others because it made me feel like an outsider. I never had a chance to get to know my classmates all that much. Plus the fact that my Special Ed. class was doing reading that was far below my abilities. I could easily have kept up with a regular first grade class, in that area at least.

After that year, I was placed in a regular classroom, but was given special help, such as being able to sit close to the board, extra time for tests, etc. Most of my teachers were very willing to accomodate my needs. Things became even better in 4th grade, when I finally met with a teacher of the hearing imparied. She helped make sure all my teachers were aware of what my needs were, as well as helping me to stay organized, which was never an easy task! She basically stayed with me from then through high school. That was a great comfort to me when I moved from one grade to the next, knowing that I was already familiar with at least one of my teachers.

For many teenagers, a driver’s license is a major achievement, offering independence and freedom from parental control. Unlike a lot of my peers, I never really felt any great need to learn to drive. I rode the bus to school and to my part-time job. Plus I had a number of nearby relatives who could offer rides in a pinch. So I never even got serious about getting behind the wheel until after high school. In retrospect, I wish I had acted sooner. From past experience with things like riding a bike, I already knew I would take longer to learn than most people. But because of my late start, I don’t have as much confidence in my abilities as I should, in spite of having my license (after six attempts at the road test!).

I was fortunate to go to a college that had a program for students with special needs, and I did recieve a certain amount of accomdations there. Mostly I was given extra time for tests, or being able to type assignments rather than hand write them. Initially, I planned to become a teacher, and possibly use my experiences to help other students in a similar situation to mine. When that didn’t work out, I changed my major to English, and managed to get a B.A., with a minor in psycology, thanks to all the education courses I took.

Although I am working full time now, I am not sure what I ultimately want to do with my life. But my parents raised me to have a “can-do” attitude, and to focus on my abilities, rather than my disabilities. So whatever I end up doing, I’m sure it won’t be defined by my CMV.

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