Most of you know I have an autistic son. Those who have met him know he is one of the sweetest, most affectionate kids around. He’s diagnosed mild/moderate with severe languages dysfunction and blahblahblah. I have a category in my memories called “autism”. When I write about his disability, I put it there.
. What hardly any of you know is that I have a severely disabled brother as well. He is 13 years my junior and he is diagnosed moderate/severe Autistic, severely mentally retarded and competely deaf. He has no physical deformaties but he is highly impervious to pain, has only limited toilet-training ability and does not sign at all. He does not speak either. He was diagnosed when he was about a year old. His deafness was not diagnosed as complete until he was about 10. Until then, he wore hearing aids.
I left home at age 15. Therefore, I was mostly absent during his growing up. I was not wholly absent though. Once my parents and I got on speaking terms, I often babysat for him and helped my mom whenever I could. That was, at least until he was finally sent away to boarding school. The public school system was not equipped to deal with him at all, but new laws required them to find adequate placement. The district my parents live in (Inman park/Little 5 Points in “downtown” atlanta) is fairly well-funded. The district chose to send him to a school specifically for multiple disability people who are uncommunicative and have no life-skills. That school was not out of state, but boarding was the only option because of distance.
Holidays were really hard. My parents did everything they could to find people to keep him during the day. My mother works in a hospital and thus does not get standard days off – the department rotates holidays. My father is self-employed as an on-call engineer: he does not get days off without massive planning and an income loss. My first brother (8 years my junior) was not old enough or practiced enough to take care of my second brother. I was trying to stay employed myself.
After I moved to Philadelphia and got married, things were actually a little easier because my (ex)husband was one of the few people who could handle my by-then physically big-and-strong second brother. One of the only wonderfully nice things I can truly say about my (ex)husband is that he helped my parents immensely in that respect. He took my brother for walks, drives and brushed off any insinuation that it was anything but standard procedure. My mother will always have a soft spot for my (ex)husband because of the way he took that burden off her hands so happily and willingly whenever he was around. We could not always be there though, so holidays were still very hard on my extended family. Especially when my brother was actually present for whatever holiday we were trying to celebrate. He had no conception of whatever was attempted; presents being opened, food being served up and passed around, relatives trying to connect… his behavior was tiring, trying and sometimes frightening. It was like having the early, pre-signing Helen Keller on crack when he was with us. Every night, everyone went to bed exhausted from the effort of dealing with him during stressful holiday times.
We got through it, though, one way or another. I was always there when I could be, but I had a life of my own forming too.
Social services were a nightmare for my parents. New laws popped up all the time, so it was confusing. Services that people were used to, kept getting dropped or changed so it was mysterious.
Everything was always so hard. I think the most important contribution I can claim to the whole story of my brother was that I was there for my mother. Her battle to get proper care for him was unending. It became her second life. She would meet with anyone, discuss any plan, follow any lead just to try and reconcile my brothers massive needs with a system that was becoming increasingly apathetic and/or hostile.
Behind it all, was the immense guilt she carried. She felt guilty that she couldn’t take care of him herself. She felt guilty that he was such a burden on everyone. She felt guilty that his life took up so much of her attention. She felt guilty that he was born. She felt guilty that she wished he weren’t born. Always, she felt guilty.
I listened to everything. I watched every tear, sat through every self-recrimination and did whatever I could to let her plow through all those emotions. I had to, because I knew my father could not do these things for her. He carried his own feelings, wrapped tight in a veil of “logical thinking” and “pragmatism”. I know he had his own issues and his own guilt and that he was afraid to share all this with my mother. They took sides, you see? She was the constantly crying guilt-wracked mom, he was the analytical methodically planning dad. It worked for them I guess. Sometimes he shared with me, and sometimes he shared with my first brother. Always though, it was “don’t tell your mother this, but…” Of course we never told, but I saw everything… from all sides. I could see the torture this whole issue-that-is-my-brother put them through.
When my first brother went to college, he decided to study filmmaking. His senior project was a documentary of our brother. My brother spent hundreds of hours and countless reels of film interviewing everyone connected to my brother and his condition.
Everyone but me.
When he showed his trailer and talked about what the film was going to be, no one noticed that I was absent.
This story is not about my feelings, though. This story was just a little jaunt through something that was probably a very big influence in my life. I’m only facing it, talking about it and actually realizing it now. I’m not sure where it’s going to go, this acknowledgement of such an aspect of me. I’m not sure where I want to take it.
I do know this: having a disabled child myself, I am almost glad I was there for my parents in the capacity that I served. I made a lot of decisions about who I wanted to be and how I wanted to face my life because of these experiences.