It would kill me each time I would hear people use the word “retard” or “retarded”, because they were derogatory terms that were not acceptable terms for special needs people or people in general. Whenever I would hear someone use one of those words, I would say to them, “Do not use the word retard, please. Retard means slow in French. It is not nice, nor appropriate, and as someone who has a special needs sibling, I find it offensive. Please stop. Thank you.” I realize now that sounds really obnoxious, but hearing people use those terms would eat me up inside. If nothing else, my brother taught me compassion in many ways, and he deserved the same respect as anyone else.
Growing up, I had always thought my family was normal. I had two wonderful and loving parents, and two awesome older brothers. The only difference between my family and yours is that my middle brother has special needs.
My middle brother has a rare syndrome called Cornelia deLange Syndrome, or CdLS. It is a genetic disorder that usually involves symptoms like low birth weight, developmental delays, thick eyebrows that meet in the middle, and delayed growth and small stature. It affects about 1 in every 10,000 to 30,000 people. The best way I was able to describe it to those who didn’t know or understand the disorder was that it was like Autism without being on the Autism Spectrum or being related to Autism at all. It was the only way I could get people to understand. In my brother’s case, it was caused by a spontaneous mutation before he was born.
My brother is lower functioning than many other people with special needs, and it has made life hard for him. He does not really talk nor is he toilet trained at age 24, despite my family’s many attempts. That does not mean my brother isn’t incredibly smart. He taught himself how to play the piano, or the same notes over and over again. He also understands everything we tell him, and even knows how to manipulate us to get what he wants, like any other person. He has his quirks just like anyone else, like how he will examine someone’s hands to get to know him or her, or how he always manages to be a ladies’ man with his big goofy grin and his musical skills.
My middle brother is the only one in my family affected by this syndrome. My oldest brother, who is now 28, went to college, law school, and is now married with a daughter. Growing up with a special needs brother was hard on both of us, but we became really close, and stayed really close because of our bonds. It was normal to us. We didn’t know what any other life was like. We both played caretakers for my middle brother at times, and also kept each other entertained when we wanted some extra attention.
For many years, my brother lived at home while attending a special school just for lower functioning special needs children. He would have cycles where he would be very happy and cooperative, and other times when he would be sad, depressed, or angry and unable to express the way he felt. My family’s world revolved around him. No one seemed to be able to control him when he got aggressive.
I grew up to be very close with my brother. I would always have to explain to people that my brother had special needs and that my life was different because of it. Some of my friends, when they would come over to my house, would get slightly freaked out by my brother and some of the things he would do. He would try and be friendly and examine my friends’ hands, but to many of my friends, it was really weird. None of my close friends dared to make fun of him because they knew I wouldn’t tolerate it or their friendship if they did that. Even now, when I get asked about my family, I explain that I have two brothers, and that my middle brother has special needs. It can be awkward at times, but after doing it for so many years, it’s almost become normal to me. There were years when we were about the same size so we would share some clothes despite the fact that he was four and a half years older. I would spend my time trying to entertain him by playing with him: dancing when he would play on the piano or singing to him when we would have kids’ music tapes playing in the background or when he would take a bath. I would always be there to help out when we had aides from the state come and teach my brother many different things, or when the babysitters needed an extra hand just to control my brother. In many ways, despite being the youngest of three, I took on the role of the middle child because my middle brother needed so much help.
However, there were times that weren’t as pleasant with my brother. I can remember being about eight-years-old and trying to keep my brother, who was twelve-years-old at the time, entertained while my mom was on the phone. My brother wanted to be with my mom, and not me, and wanted her attention. He couldn’t express this verbally, so he bit me on my left shoulder. This was not out of character for my brother, who at certain stages, used to bite a lot. While it was scary, I kept my cool aside from a little cry, knowing that it would all be okay. Even before that incident, my mom has told me that when I was a little kid I used to walk around with a spaghetti strainer on my head to protect myself from my brother who would bop me on the head each time he passed me. He would sometimes also scratch people in my family, enough to draw blood on occasion, if he didn’t get his way. I have been on the receiving end of these scratches multiple times.
Right before my thirteenth birthday, my parents decided my brother really needed to go to a residential school. They had looked at residential schools for my brother five years prior, but couldn’t seem to find the right one. They finally decided on a residential school in Maryland about four hours away from home that was run by nuns (we’re a Jewish family) and would allow my brother to come home every five weeks for five days. The only religious concern my parents had with respect to the residential school was that we didn’t want him going to Mass, but we were able to opt out of that when we enrolled him at the school. However, my parents also knew he stood a better chance at getting into a group home, or a home for special needs people after they turn 21, if he went off to a residential school rather than staying at home. They felt like the school could deal better with my brother’s issues and help him manage tasks with more ease. My parents were exhausted and needed help. Even when he did go off to the residential school, my parents feared for the first month or so that the school would call us and tell us to take my brother back. They never did.
[pagebreak]
My brother did well at the residential school. While we did pay for a one-on-one aide, because he really needed one, he always seemed to have a good time. He got along well with his teachers, and he calmed down quite a bit. There were still a few instances where he got into trouble (he slapped one of the nuns on the breast once and pinched another on the butt among other things), but he was happy and healthy and that was the most important thing to my family.
During my brother’s last year at the school, we started to worry about his future and if he would get placed into a good group home or a group home near us back home. We were worried for a long period of time that he would be spending the rest of his life in a group home far away from us, and that we wouldn’t be able to see him a lot. However, we did have some things that really helped my brother get into a group home despite the long waiting list. Going to a residential school and being lower functioning tends to get a person placed higher on the list. The residential school had group homes that it sponsored and that it placed its students into, but they were really far away. Right before his graduation, we got a lucky break. There was an opening at a group home by us in New Jersey and they felt like my brother would be a good fit, especially because it was a lower functioning group home, meaning that the men who lived in this group home were on the same level as my brother. My whole family came to check it out, and we felt like it was a good fit. The other men were nice, the staff was attentive and caring, and my brother would have his own room. We decided that after graduation, my brother would move in at age 21.
My brother has now been at that same group home for the past three and a half years and is doing well since he graduated from the residential school. My family sees him at least once a week since he lives about half an hour away, usually on the weekends. We take him for car rides, buy him French fries, which he loves, take him home for a nice relaxing bath that he enjoys, let him pig out on more of his favorite foods like hot dogs, tomatoes, cucumbers, and olives, and let him run around and play his many pianos scattered throughout the house. It’s always nice when I come home from college to see my brother in a happy mood and being himself at home, even if it is for a little bit. During the week, he goes to day programs where he both learns things and also gets to play around and have fun. It keeps him occupied during the day, which is enough to keep everyone happy.
My brother is an amazing inspiration to me, and I love him no matter what, probably even more because of his disabilities. I am proud to be his sister, and I am proud to be a supporter of the special needs population.
Do you have a story to share? Submit your story to Her Story!