My brother Billy was born in 1983 in Hollywood. I was 18 months old at the time. During my mom’s pregnancy with him, she contracted chicken pox from me. We are strongly convinced that this caused it.
During the first few years, there were few obvious signs that he had a disability. He was slow, but at the time, so was I. Dad did not start being concerned until Billy was about 4. When the diagnosis of autism came, Dad felt “heaven and earth came crashing down.” It was a hard realization to come to.
The following years were a struggle. He was never verbal, nor could he communicate in any other way. He was occasionally aggressive – pinching, screaming, hair pulling in earlier years, grabbing. He started going to school at age 4. We sent him to a few different schools in the area, but few could handle students with his level of difficulty.
When he was 8, he was placed in a school called Spectrum Center. The students at this school are known to be the ones with the most extreme behaviour – within circles, if I were to mention that my brother went to Spectrum, the people would be surprised. He stayed at this school until he turned 22, which was as long as the state would allow him to receive public schooling.
Because I had hardly any cousins or friends in the area, Billy was about all I knew. I saw his bizarre behaviours frequently, and they seemed normal to me. I picked those up, and apparently, I appeared hyper and silly at school. I got in trouble a lot during my kindergarten and first grade years. Actually, when I was in kindergarten, I was tested for the possibility of being a Special Ed student, to which I tested negative. I improved over the next few years in my behaviour, though relating to my peers would be a challenge for years to come.
When I was in junior high, the term “retarded” became a sensitive issue for me. People abused it all the time as a synonym for “stupid” or “lame.” My parents made me aware that this was an offensive term to handicapped people. Sometimes, I would bring it to people’s attention what I thought of the word – usually friends and acquaintances. And while some people listened, others only made me feel more resentful about usage of the word.
As he and I both progressed through adolescence, we both went through changes, though not the same ones. The only major changes Billy went through were increased aggression in his behaviour and our procedures in handling him. He never became potty trained, and scratching and pinching became more frequent.
I became more involved in his physical care. Without any requests or pressure from my parents, I started changing his diapers, giving him showers, and dressing him up. While I did not do this on a regular basis, I would do it occasionally just to help my parents out. In fact, for a while, Billy was more obedient towards me than towards my mom – during school breaks, I would relieve my mom and help with Billy.
About halfway through my high school years, a wonderful family came into our lives. A woman by the name of Leticia started working for us, and she would come in during weekday mornings to dress Billy up (and even take me to school – my dad worked during the day and would have already left at the time, my mom worked nights and would have been coming back). She struggled in the beginning and almost quit. But she stuck with it, and in time, she did more than dress him up in the morning – she would take him to her house for an entire day during weekends.
Furthermore, after she started working for us, my parents and I were able to take vacations for periods over a week. Eventually, her whole family would pitch in. This included her parents, siblings, nephews/nieces, and boyfriends – whenever they were around.
As I was ready to graduate high school, I became more concerned of my identity. In particular, I became more aware of how having a brother like Billy affected my concept of social interaction. I felt like no one could understand what it was like – growing up with someone who would be forever helpless, with no one to relate to. I felt that no one would ever understand. So as much as I was willing to have a conversation with anyone that crossed my path, I was very reluctant to get to know anyone. I had little faith in people. To begin with, I did not ever feel like I could relate to my peers anyway. I had few friends, and these were people that I’ve known for a long time.
This attitude continued for much of my college years. However, in my last year in the university, I slowly decided to change my attitude. I became more aware of other people with similar situations (I’ve actually always known that they existed, yet I could never get myself to realize that I’m not alone – perhaps I did not know enough such people). I also realized that if I were to continue on with this attitude, I would never be happy nor achieve anything meaningful in life. For that matter, I knew that my attitude wasn’t going to help my brother, parents, or the Special Needs Community at large.
I currently am in the process of becoming an elementary teacher. Perhaps this is a good way for me to help others understand the special needs of others. As for Billy, he is part of a day program that keeps him busy during the duration of each day. Leticia and her family take care of him through this day program.
At this point, we’re not sure what Billy’s future will look like in the long run. There is no hope that he will ever learn how to communicate or take care of his basic needs. For now, he is doing fine living at home with my parents and I in the evenings and mornings, as well as his second family during the day.
Nevertheless, I know that we can go further. There are thousands, perhaps millions of other people like Billy who need help, yet have no hope of ever helping themselves at all. They are perhaps far less visible than they people who are capable of at least partial independence. Yet, they need our help just as much, if not at least a little more. I’ve run out of ideas, and my emotions, at least in this area of my life, are shot. So now, I hope to have the support of the community. Because we as a society are so concerned with defending people who can defend themselves (ever notice how people blow the race card out of proportion?) that we do relatively little to help the real needy. Let’s work together to change this!