The Adventures of a Super Sib…Now where did I put my cape?

Why is that as soon as a child receives a diagnosis their brothers and sisters suddenly become siblings? Why does that relationship become scientific instead of natural? Sure, my relationship with my twin sister is different from my relationship with my older 2 sisters, but just because Julie has Autism doesn’t make her any less my sister, or any more a sibling.facebook_1408022731682
I have had many families ask me what it’s like growing up with a sister with Autism. I am never sure how to answer this question. I don’t know what it’s like growing up without a sister with Autism. Life with Julie has certainly had it’s ups and downs, but so has growing up with Jennifer and Alyssa. Julie has definitely brought opportunities and life lessons into my world that I may have otherwise not taken advantage of. My whole family has been deeply entrenched in Special Olympics ever since Julie strapped on a pair of roller skates and turned our front yard into a roller rink at the age of 6. Coaching and participating in Special Olympics has brought me a joy and a sense of responsibility that I am not sure I would have even considered if Julie were not in my life. I am more accepting of differences and challenges and a fierce advocate for those who cannot defend themselves. Would I be a different person if Julie hadn’t taught me these things? I am glad I will never know.
Not that life with Julie has been all positive. It’s frustrating. Very frustrating. My biggest challenge with Julie has always been our communication barrier. I cannot count the amount of times I have wanted to be able crawl into her brain for just a few minutes to find out what she is thinking. Like why does she insist on wearing a jacket when it is 90 degrees outside? Mostly it is frustrating when she is upset and we have no idea why. That has to be worst part about Autism in my experience. As a sister you want to support and help your family and you can’t always do that when your sister cannot tell you what is wrong.
And of course there is added worry that I don’t necessarily have for my other sisters: Is she living the best life she can? Who will take care of her when my Mom is gone? Is she happy? There is a piece of that relationship that becomes more parental than sisterly. But who hasn’t gone Mom mode on a brother or sister at some point in their life?
We don’t have that typical relationship that sisters have but we have certainly found our place with each other. We commiserate at the gym together, we fight over the iPad, we spend girls’ nights out together and Sunday family dinners. We don’t have heart to heart conversations about our weddings and what we wanted to be when we grew up. However, we do have an unspoken bond and I will take the whispered random “I love you” while we are going for a walk over the wardrobe arguments any day. When it comes down to it, life with a sister with Autism is the only life I know. And I am pretty sure I am a better person for it.

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4 thoughts on “The Adventures of a Super Sib…Now where did I put my cape?

  1. kcar

    As a mom with 8 yo twins – my daughter with autism and my son typical – this is so comforting to hear. My son overall is so good with Clara. Right now he is cheering her on as my husband is teaching her to ride bike without training wheels. Clara works hard for even these simple childhood memories. Today i bought her a purple bike and new helmet to match. She was so excited! I love that she is not like the rest of 8 year olds- expecting to get a bike – she is beautifully naiive and my son loves to join in that pure joy!!!! thanks!

    Reply

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