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I’m on a vacation with my Mom, Brother and Sister and my children. I am the only one who is “equally” related to everyone at the table. Yet the degree of emotional closeness is so very different than that of blood.

My younger sister was in a car accident shortly before her 18th birthday. She suffered a serious brain injury, and was in a coma for over three months. It took her a long time to recover her speech and walk again without much of a limp. She’s been left with a seizure disorder and significant cognitive and social processing issues. She still lives with my Mom, and works in a supported job, shelving books at the public library. She is not able to live independently.

This makes vacations with my family rather interesting.

My sister strikes strangers as odd. She has an inappropriate sense of humor, she doesn’t process the social interactions between others well, and often feels left out. She can’t walk down the street without approaching every dog being walked or every baby, yet because of her disability, she strikes people as odd and vaguely threatening, making these encounters extremely embarrassing. She is impulsive, and doesn’t respond well to our attempts to get her to knock it off.

Yet she also often seems presumptuous and seems to use her disability to excuse all sorts of behavior, taking responsibility for very little. She often treats others rudely and can be really obnoxious. I get tired of feeling like I have to excuse her behavior or act like an interpreter all the time, especially when she seems to find these attempts to mediate the social awkwardness she causes as being insulting.

This means explaining this to my kids in a way they’ll understand. This means exercising patience when I am at my wits end, having to cope with behavior from a 37 year old I wouldn’t accept from my kids. Watching my mom interfere in discussions between my sister and myself, as if we were 7 and 11 years old again. I want my sister to take some responsibility for her actions and choices. But what is she capable of, and what is really part of her disability? What happens when my Mom passes away, and I am left being the guardian of my sister?

I know a bunch of parents who have kids with autism and asperger’s syndrome, and it often strikes me that my sister’s head injury is like someone getting Asperger’s by trauma. Her inability to read or react appropriately to social situations makes everyone uncomfortable. It’s stressful. She doesn’t look so different from the outside, but as soon as you speak with her, you know there’s something wrong. And it’s hard, because people would treat her better if they could see her disability- as it stands, people just make assumptions ranging from her being out of it due to drugs or drink, to just plain being weird.

As her sibling, I want her to become more independent. I want her to take responsibility for her own life and happiness as much as possible. I don’t want to have to live my life making excuses for her. That just seems wrong and unfair. I also want to have a relationship with her and to understand her, but the walls she has up are thick and hard to penetrate. I understand she expects to be hurt and rejected at this point in her life. But only she can change her actions, and how she is perceived. Which means she has to recognize that there is a problem. And, because of her cognitive disability, she does not.

I am frustrated. I hate feeling this way- feeling like my tolerance is low, but there’s only so many excuses that I can make before holding her responsible for her own actions. I am running out of excuses, and running out of other cheeks to turn.

Does anyone else have any tips on how to make this better? How do we change the dynamic so it makes sense and stops inflicting pain on everyone involved? Any and all suggestions are eagerly requested!

[tags]family, children, parenting, kids, autism, asperger’s syndrome, inappropriate, advice[/tags]
Photo graciously provided by OlliK, through a Creative Commons license, some rights reserved