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Volume 16, Issue 3
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Spring 2004 |
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| published quarterly by: The New Hampshire Challenge, Inc. P.O. Box 579, Dover, NH 03821-0579 |
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| In This Issue |
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In fourth grade, I remember filling out an all-about-me type of worksheet in the beginning of the year. One of the questions was 'What do you want your class to know about you?' and I wrote 'That my brother David has Fragile X Syndrome.'
That was 1991, the year that my brother was diagnosed with Fragile X, a type of mental retardation that is caused by an abnormality on the X chromosome. It was one of the first genetic abnormalities to be catalogued, and as a result, has sort of put our family at the vanguard of a movement. As a result, from the very beginning our family has had to deal with a lot of misconceptions and misinformation from the public, such as insurance companies, where we encountered difficulties because of misconceptions about my brother's disabilities.
At the same time, there was the problem of the general day-to-day frustration of living with a brother with severe mental retardation. At home we tried to rearrange our lifestyles to accommodate David's needs, since we all soon realized that our own peace of mind would only come once David was settled. There was no point in getting angry or frustrated with what David wanted or decided to do, because, especially when he was younger, he did not posses the capability to understand or to verbalize his needs. David's childhood nickname, 'Baby Boss,' has a powerful meaning taken in this context.
In these two ways, life with David made me a part of something unique and special, which was going to be a part of my character and life from then on. First came the news crews, from 60 Minutes to the BBC, to interview my mother about her fight with our insurance companies over my brother, which made me think 'Hey, this isn't so bad, I get to be on TV.' But after the news crews stopped coming as often, and David started becoming more difficult, I realized that life with David wasn't going to be easy.
For me, life with David read like a long list of major and minor annoyances, such as the 'Chinese fire drill' of trying to get him into the car that could last up to half and hour; driving to a restaurant only to have him refuse to go in because of a car he recognized in the parking lot; listening to the Mary Poppins and, later on, the Spice Girls over and over on high volume during all car journeys.
However, as I've grown up, I've realized that these minor annoyances have become routine for me, now that the birthing pangs of adjusting our family life to life with someone like my brother are over. Listening to the sound of the Spice Girls pounding through the floor above or sitting on the porch with him talking about our cars while reciting the correct dialogue, are just as normal to me as having a brother who plays video games and talks about sports. I now find nothing but happiness when I'm home around him, and I can imagine him no other way.
Although I talk often about how special my brother is and how much I love him, I wondered how much of it came through necessity. Did I find him charming and remarkable simply because I had no other choice? After all, I had to live with my brother. The true test came this past summer, when I worked as a one-to-one aide with an eight year old boy with autism named Robbie. Would I be able to muster the same patience I have with David with this new kid whom I knew nothing about?
I possessed an innate patience and energy that enabled me to keep chasing Robbie, to keep coming up with new songs and poems and stories, and to understand what exactly was bothering him when he became anxious.
I realized that I had endless patience and a high comfort level dealing with what special education calls 'scripting', which means when a student just likes to tell stories and they want you to talk with them. For my brother, the lines included dialogue from the Golden Girls and about our cars, a favorite story of his involving me driving him to a baby-sitter early one morning years ago.
The very first day at the summer program before the buses arrived, I had the luck to meet Robbie's aide from the school year, and the first thing I asked her was 'What does Robbie like to talk about?' and she gave me the key: Robbie like Indians and the Wizard of Oz, and seemed to like his stories in question and answer form. Once I met Robbie, I also discovered that he liked bats, so we quickly developed a question and answer script that started with 'How do bats sleep?' to which he'd reply 'upside down' and turn his head upside down. From this starting point, our summer began.
At the end of the summer, I was talking with my father and he asked me if Special Education was something I was interested in. I understand his motivation for the question, since, at 21, I'm at the age when my peers are spending the summer as interns for a future career. But the question struck me for a different reason: it made me realize that here I was, working in Special Education. And I was having a good time doing it as well.
It was a surprising discovery for me. After the travails and effort of living with David, I found I was not too jaded or tired to genuinely dedicate myself voluntarily to another child like him. |
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