Mar 14, 2013 1 Share


Illustration of two children dressed as superheroes.

"Oh my goodness...!" I saw the email’s subject line and felt a grin on my face. I'd been accepted as a workshop leader in the Autism Society of America's 44th Annual Conference. My proposal for a session on sibling support had been accepted as a part of the program. I'd be traveling to Pittsburgh, Pennsylvania in July to present. This was really happening! 

“I’ve been accepted!” I kept saying. My husband reached over to hug me; I could barely keep still long enough to receive it. The fact that I’d been invited to speak about sibling support meant so much to me. It showed me that my family’s experience, and my perspective as a sibling, is of value to others in the community. Speaking at the conference would allow me to transmute difficulties into sustenance for others, and I was thrilled. 

I felt the same way when I was asked recently to serve as a volunteer member of the Sibling Leadership Network’s Communications Committee: that this was work I was meant to do. The sun was shining bright … but then I felt sudden fears pelting down on me like an unexpected shower. I’m so nervous! What if I don’t do a good job? I have to do a good job, and connect with the audience. I really want to give a talk that’s helpful and supportive for families, to show them that they're not alone! But what if I fail? I can’t fail them ... 

And right at that second, I heard how I sounded, and started laughing. I couldn’t even give myself thirty seconds of undiluted excitement about this opportunity; no, I was already pursuing perfection. Realizing this, it was as though I was looking at myself from a kind stranger’s perspective. From that vantage point, I thought, Honey, you don’t have to deal with all that pressure. You just have to come prepared—which you’ll do anyway—and show up with love. 

My perfectionistic reaction is so much a part of who I am as a person, and as a sibling. I will probably always feel that flutter of fear, that pressure to perform. The question is, what will I do with it? The anxiety isn’t something to bury; it’s something to embrace. I’ll make it a part of the presentation itself, sharing my struggles in hopes that it will help other sibs who experience the same anxieties. 

Autism researchers actually have a term for sibs who strive in this way: Supersibling. A 2007 New York Times article defined “supersiblings” as “children who are especially sensitive and responsible as a result of growing up with someone with a disability.” Children who feel pain and joy acutely; children who have so much invested in caring for others that they can’t always see what it means to care for themselves. 

I first heard the term from fellow sibling Maureen Chesus, and I gasped with recognition when I read what she wrote: “[The] feeling that everything was always my fault carried into my young adulthood. When I moved away to college, my new friends always joked about how I was constantly apologizing for everything … ” 

I wouldn’t trade my experience as Willie’s sister; it has given me gifts I might not have had otherwise. Yet I also have to be aware that many of my instinctive reactions flow from a “supersibling” space. Like Maureen, I tend to apologize constantly. When things go awry, I assume that it’s my fault; I take responsibility (and blame) without a second thought. 

It has taken time to uncover these buried beliefs; they’re so much a part of me that it can be challenging to question them. Nowadays, though, I can (sometimes) catch myself when I start walking around with my shoulders up to my ears. I can laugh at my perfectionistic tendencies, and in doing so, I am on my way to being free of them. 

In fact, Willie himself has helped me to loosen up, just by being himself. He loves to laugh and play; he’s unabashed in his enjoyment of life. With him in mind, I won’t shoot for ‘perfection’ at the conference. Instead, I’ll aim to have a blast.

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Thanks for the awesome shout-out! :) Reposting this over at my Supersiblings blog! :) What's your email address? Would love to chat more about collaborating. Mine is