Back in Chicago, we met with Maureen, a lawyer in Chicago who has an older brother with autism. Overall, Maureen’s experience as a sib has been pretty positive. Maureen’s story is one of great planning and support.
Maureen and her brother Donny, who is just three years older than she is, are very close. “He really adored me, and I felt that growing up.” She remembers a time when he was the older sibling, but as she got older, as is the case with many younger sibs, Maureen fell into the role of the older sibling, acting as the babysitter, the caretaker, etc.
Usually, we ask people to tell us what it’s like when everything is going well in the family. Instead, we asked Maureen if she had a favorite story regarding her brother, and here’s her response:
When asked about challenges she experienced as a kid, here’s what Maureen had to say:
“I was very lucky. I grew up with a lot of support services.”
As a child, she and her brother both attended a camp that integrated the campers who did and didn’t have disabilities. She attended from kindergarten to 5th grade and she got to meet a lot of other sibs through the program. She cited the camp as one of the important supports she had growing up.
“It was nice to not have to talk about it and just have that acceptance.”
As her brother got older, more challenges arose. He became more aggressive and temperamental because of his hormones and would often pull Maureen’s hair. When he was 16 and she was 14, he went to a residential school for people with autism, and that was in part because of his aggression toward Maureen. Despite all that, Maureen reiterated that her brother was very loving and she feels lucky that she was able to appreciate that from a young age.
She and her parents speak openly about Donny, and she was really encouraged to be that way. “There was this explicit direction that I should talk about it if I didn’t have enough time, didn’t have enough attention.”
“I feel like I’ve been very lucky because I’ve had friends whose parents will not talk about it.”
“What I worry about as I get older, is that I don’t have other siblings, so I worry about my parents and caring for them, and at some point I am worried about my brother.”
“I think that we’ve had the conversations we could have, but the only thing I wish is that it would be easier to identify another guardian.”
Currently, she’s on the board of SIBS Illinois and is involved with the chapter, but she isn’t directly involved in the disability community. She expressed a desire to become involved and become an advocate. “I think up until this point in my life, I kind of felt like I did my time and wanted to stay away from it for a little while.”