No Man is an Island: A Sister’s Perspective (page 2)
If I was stranded on a desert island and was able to take only three things, it would be an easy decision. I would take a really long book to read, which could double as kindling for a fire. I would also take a large ration of noodles because I am a college student, and noodles go with everything. Lastly, but most importantly, I would force my brother to come along. He is no nature boy, but he would keep me laughing so hard I could tolerate anything.
My brother’s name is Jan, Polish for John, and he is 14 years old. I might not be able to remember last week, but I can remember the day he was born. Back then, in first grade, it was a cool thing to be having a little brother or sister. When Jan was born, it was like God answering my prayers. Within the next few years, we would come to learn a new word when describing my brother, Asperger’s. It has been about 8 years since my brother was diagnosed and he is a completely different person than he was back then. When he was younger, my brother was not very verbal and prone to violent behaviors. I had always thought that "autistic” was another word for fragile, so growing up I became my brother’s champion. I protected him from bullies and the cruel world that looked down on him. My brother may be fragile, but he was never damaged.
As time progresses, most siblings grow apart. However, the bond between my brother and me has only become stronger if anything. Yes, we go through our occasional rough patches like any siblings, but we still love each other at the end of the day because we have gone through so much together. My brother used to seek solace in my room when my father would yell at my mother. These one-way fights would go on for hours, and my brother would climb up on my bed and watch movies. I have always tried my best to protect him from the pain surrounding him, but the veil had to be lifted sometime. We prefer to keep our conversations light and humorous instead of dark and depressing. Whenever tragedy has touched us, my brother and I combat it with our own twisted brand of humor. This shield of laughter has helped us to deal with many difficulties.
Another reason my relationship to my brother is so strong is because I know exactly how he thinks. I also have Asperger’s and am proud of it. I was not always so proud, or even aware of it for most of my life. I thought the whole world saw things the same way I did. It was not until the beginning of my high school career that I began to see that my way of viewing the world got in the way. Before attending high school, I had very little cause for confrontation. I now found myself in positions of not only confrontation, but dealing with people who had drastically different views of life. I was being put in situations that I did not know how to deal with or react to. School is a very social climate and I learned all of my social cues from watching television and movies, but trying to acclimate in an all-girls school was a challenge for the ages. Supposedly my freshman year was one of the best years ever, but I don’t remember most of it. Near the end of my sophomore year, I had a traumatic brain injury (TBI) while attending a concert. The TBI left me with little memory of the past 15 years of my life or many of my motor skills. I relearned most of my social and motor skills over the next couple of months; my memory, though, has never fully recovered.
Shortly after my TBI, I was officially diagnosed as being on the spectrum. This label did not change my life by any means; it only helped me to develop more of a sense of identity. I had been advocating for people with ASD since my brother was diagnosed, so by the time it was my turn, I had many useful coping strategies. I also had experiences of overcoming disabilities myself. Growing up I had a speech impediment, dyslexia and dysgraphia. By the time I got my official diagnosis, I already knew that using a laptop was my main accommodation.
I am now in college and continue to fight the good fight. I advocate for students’ rights and reach out to communicate with individuals across the country. On campus I have started a “disability network” to help students at the college. As a resident assistant, I act as a mentor for students on campus and help them with their problems. I feel that there need to be like-minded peers to help students adjust to college, high school or any stage of life. My mother always said to me, “If you don’t do it, who else will?” and that has perfectly captured my sentiments. I continue to work at the college, state and national levels to try to help students with ASD. It is important that the stigma associated with disabilities is removed, especially for my brother. Too many times my friends and I have heard that we are “not disabled enough.” This directly impacts our self-esteem and our opinion of the world. I have found that most people don’t know what individuals with Asperger’s look or act like; because we do not fit a stereotypical model of a disabled person, we must not be disabled. Like so many others on the spectrum, most of my difficulties are social and therefore cannot always be observed in an academic setting. This does not mean that we are not disabled, just that we can hide it better sometimes. I can only hope that I am able to empower people to accept themselves, differences and all. It is not a bad or wrong thing to have autism; we just are.
As I sit on my deserted island, I can only laugh at my misadventures so far, at the people who helped me and at those who didn’t. My island would be perfect, with no hate or resentment. Everyone would be allowed to “stim” or act however they like. No one would even have to talk if they did not want to. My perfect utopian island would act as a haven to those who have been tormented and ridiculed. Though we may not all be able to live on these islands, I can only hope we take a little part of the beach back with us to our everyday lives.
I love my brother. No matter who he is or what he does in life, he will always be my little brother. I just hope that one day others will get the chance to see how much Jan can contribute to the world.
Reprinted with the permission of the Autism Society.
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