I hope I havn’t misled
The major focus of my blog is autism from the point of view of a sibling. My older brother, Michael is autistic, low functioning and nonverbal. He was at home until I was about 10 years old. After he went to Willowbrook, a large mental institution on Staten Island, we went to visit frequently. Willowbrook was closed in the late 1970s after being exposed as a place where abuse was rampant. Robert Kennedy, then Attorney General of New York, characterized it as a ‘snake pit’.
I didn’t see much of Mike until after college, grad school and more than 10 years away from the East Coast, although my parents signed birthday and other greeting cards with their name and Mike’s too. When I returned to New York, things had changed. Mike was in a Developmental Center and shortly thereafter, moved to a group home. I was actually astounded that this was a possibility for him, before I visited. Suddenly he wasn’t in warehoused. The caregivers paid him a lot of attention. I even became involved in his periodic evaluations.
It’s been a long time
I haven’t seen Mike since I moved to the West Coast, five years ago. Obviously, he is on my mind, since my writing about my efforts to discover my relationship with him is the main theme of this blog. Mike has had a huge impact on me in terms of: 1) how I see the world; 2) compassion for those unable to care for themselves; 3) questions I have about the brain and the mind; 4) questions about language and communication. However, today I am not in the midst of taking care of him or even participating in his care.
Going for a visit
I am really looking forward to visiting my grandchildren, but I also have plans to see my brother Michael. I am looking forward to that as well. Maybe, after pouring over all the photographs I took of him, I will have better recognition of his moods, or better yet, what he wants to communicate with me. I am bringing my film camera, just as I did on many prior visits.
Siblings in the trenches today
There are many siblings who are facing day-to-day feelings of conflict, uncertainty about their role in future care of their siblings; heartbreaking interactions with those who do not understand the differing abilities and or disabilities of their loved ones. Some feel an obligation to care for their siblings at the expense of their own lives; some are very angry and some don’t know what to feel.
I know of a teenager whose Mom is sick and whose brother requires constant care. I don’t know what to say to such a person who has such love that, at such a young age is willing to sacrifice his own well being to take care of his brother. He must feel there is no choice.
Message to other sibs
I am not in the trenches with the rest of you, but I can tell you that your siblings have a great impact on your later life. I hope you all get to live your own lives, as hard as that may seem, it would be a great tribute to your sibling.