Forever Young

My sister has been 12 years old for just shy of 13 years. Indeed she’s a 24 year old young lady with Asperger’s Syndrome. She was developmentally normal once, but now there’s only evidence of that in pictures and cloudy memories.

I live at home with her, so it’s not something I sit around thinking about regularly, but last month she went out four times with a couple friends she’s had since junior high school. Once to a barbecue and the other times to the mall by the house, something teens and preteens in the area do.

I never heard many of the details. The most I got out of her was a nod when I asked if she had a good time. She barely speaks to me, or speaks much at all for that matter to any of us in the house. When she does its in a tiny voice. The loudest she ever gets is a “normal” inside voice tone when she’s really mad at me. So mad her brooding silence isn’t enough. I hear about the things I do that piss her off from my dad on occasion. Never from her personally.

She doesn’t often look at me, or respond if we’re talking to her, or asking questions. It used to bother me a lot more than it does now. Now I just feel sad that I may never have a normal relationship with my sister, whose going to be all I’ve got when my parents pass away one day.

Will she be able to take care of herself without them? She’s babied at home, and reminded to do everyday things like eat and shower. She spends her days on the computer or sleeping. She’s not often bothered to help out around the house. She doesn’t like swearing or drinking, she’s a vegetarian, dresses VERY conservatively and she watches mostly reality TV and kids movies.

That last part is pretty much the perk (not the reality TV). I get to have a longer feeling childhood living with a childlike sister. For instance, I trick or treated into my 20s with her until my mom insisted we were too old. She was dressed as an angel for years. One year I got her a pair of light up wings to go with her costume.

She doesn’t often smile and never with teeth. Her laughs are muffled, like she’s trying to hide them. I should have cherished those experiences more, because being an adult sucks.

Mostly I’m frustrated though. She’s not easy to live with, and though most of the things she does drive me crazy (and our parents pretty much let her do her thing so she’ll be content) she really is important to me. She’s my little sister.

Back to her seeing friends, I wonder often why they’re friends with her. Do they feel bad for her or genuinely like her and just excuse her odd behavior? Historically, she’s gone out about once a year during the summer with those friends to the mall. She doesn’t drive, so we give her rides and made sure she’s met up with whoever it is before leaving.

My mom refuses to let her take public transportation because she worries something will happen to her, so we take turns driving her pretty much anywhere she needs to go, mostly school.

It pisses me off thinking her friends may not genuinely care for her. I worry about them taking advantage of her or talking about her behind her back. It brings out a protective side of me. Oddly enough, it also gave me conflicting emotions on how I feel about her “growing up” and being social. She hasn’t seen her friends again for the last month, and I wonder if that makes her sad.

The thing that made me want to write this post was how angry I was a few days ago when she and I were shopping at the grocery store with my dad. We were picking up bagels and she saw her friend who works in the bakery. My dad happily encouraged her to say hi. She stood there awkwardly for a minute, a smile on her face without saying a word, then had a 60 second exchange with this girl whose face expressed that she wanted nothing to do with my sister. Maybe she was having a rough day at work, but it both enraged me and made me very sad. It didn’t seem to phase my sister.

Having a family member with Asperger’s is hard. I’ve often felt bad for my parents, who have two abnormal children (myself being bipolar), but we’re well loved, and our mom and dad are grateful to have us as we are to have them.


9 thoughts on “Forever Young

  1. Thank you so much for sharing β™‘ I have a personality disorder too and my dad in particular loves that he can still be part of my life. My “little” sister has out grown us at 22 she’s trying to find her own life and “will do what she wants” as for me I care very deeply what my parents say and value our relationship so much. I have borderline personality disorder and suffered post traumatic stress for the last 6year’s. I’ve now over come alot of my problems with dialect behavioral therapy. I’ve worked hard to build my relationships with my family and hurts to see my sister shut us out. I get worried she does it because it’s too much for her and flip from it being all my fault to fear that she has emotional irregularities as well.
    Anyways, my point is don’t feel bad for your parents… my dad just wants me to be happy and I do try for him. He’s so thankful I let him be part of my life and it hurts him that my sister is “normal” but wants shuts us out of her life. We both value our relationship so much.
    I have a friend with aspergers and it’s funny, we get along because he doesn’t know what I feel like and I don’t know what he feels like but we basically explain ourselves to eachother then imagine what it would be like to feel the opposite. It can be quite funny sometimes. I don’t know a great deal about it but he too has dialect behavioral therapy and cognitive thinking and it’s helped find the middle ground and bring peace and understanding to ourselves and toward others.
    Sorry this is a bit jumbled and confusing but feel like there’s to much to say but not enough words to say it.

    • Your comment is the kind of comment that makes writing a blog post so rewarding. So thank YOU for sharing. I know my dad just wants us to be happy too, I just can’t help but feel sad sometimes. I’m so glad to hear you’re in therapy. It helps SO much (unfortunately right now I can’t afford it for myself, ulch) And also I think your relationship with your friend sounds like the makings of a good novel, you should look into that πŸ˜‰

      • Oh thank you πŸ™‚ alot of people do say that I should write, tell my story but it’s easy for me to tell it hard to write it which is often the opposite to other people.
        Lucky enough my therapy here is free! πŸ™‚ I actually can’t even remember why, I’m in Australia and we’re very lucky with our health system. I was lucky enough to get into a group where we’d just begun as cause and have been able teach both students and teachers alot. They have a text and work book. It’s by Marsha linehan. It truly changed my life!
        Something my friend tells me is that to not feel sad for him… He often doesn’t realize when he’s supposed to feel sad he said, so he’s ok. But when I get upset that makes him sad. He doesn’t get other people but he tries to get me and can see in my face the pain & anger. It’s been really interesting to share things like this with him, learnt so much. Maybe that’s what you could have with your sister. Although dialect behavioral therapy will be a bit too much for her there are lots of cognitive thinking exercises designed for younger minds.

      • Hi Krissy,

        It’s obvious that you love you sister very much. She is lucky to have you. I’m sure on some level she feels it too, though she may not be able to articulate it. I also can relate to your fierce feelings of protectiveness and concern for her well being. I feel the same for my children and elderly mom. You have a big heart and are a kind loving person. I think the best thing is for us cherish each day, because we cannot control the future.

        Wishing you all the happiness and love you so deserve,


      • Sent me an e-mail when you can Rob and let me know how you’ve been. Gmail didn’t save your e-mail for whatever reason so I haven’t been able to contact you, but I’m really glad you’re still checking up on my blog. I appreciate every word you have to say to me.

  2. I love this. Being mum (i’m in England) to a child with aspergers, it’s lovely to see that you care for your sister and the way you worry about her, is the same way I worry about my son, in particular when you are worried about her friends taking advantage, that really worries me. But your last comment about you and your sister being abnormal struck a chord and wanted to say this, no one is perfect and no one is ‘normal’ every single one of us has something that could be described as weird but some would say wonderful. The love and care that you have for your family is evident throughout and that is most ‘normal’ thing anyone could possess and yet the people who think others are abnormal or weird or different often are not lucky to experience the care you clearly have, so please don’t ever say that you and your sister are abnormal, because it is clear to me that you are anything but.

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