Mar 15, 2012 0 Share

Leading Fellow Siblings

Hands linked together to form a circle.

It's always a strange feeling when someone asks you to lead a group you've never been a part of before. It's an honor and a challenge, both. I'm nervous at the prospect, but even expressing this fear in writing helps me to dissipate it, and to prepare. 

What's going on? This weekend, I'm planning to attend a Family Support Day hosted by the Lollipop Kids Foundation, a non-profit based in the DC Metro area, which “exists to combat social stigmas, ease the financial burden placed on [families], offer emotional support, and provide brief respite so that every child with a disability has access to a hope and a future.” At this particular Family Support Day, I've agreed to meet with and lead a group of fellow siblings in discussion and reflection. We'll share stories and (hopefully) build bonds with one another. 

I don't have a precise plan in place for our time, but I envision creating a space safe for sibling reflection and connection. We'll speak, be silent, draw, and write letters to our sibs—which, I suspect, will become love letters. I'll plan to share relevant stories from my book, and also listen closely to the treasure-troves that others have within them. 

Though I've certainly experienced the power of sibling support in my own life, there's a part of me that always hesitates before meeting fellow siblings (and especially so when I'll be the one leading this particular group). I wonder: Will we be able to translate our specific experiences into something the rest of the group will understand? Will we be able to empathize with one another, and offer encouragement and hope? I have to believe that we will. 

Personal as our family relationships are, I believe that we can find common ground if we're looking for it. As special-needs siblings, we've all had crash-courses in paying attention, listening, and connecting with someone with a highly individualized communication style. Siblings face unique challenges, yes, but we also receive amazing gifts, if we so choose. Siblings know the pain of feeling excluded from “normal” … and we know the joy of being included in something better

For my part, I've found that fellow special-needs siblings tend to be a remarkably open group. The reason is no secret: Our siblings teach us not to make assumptions, to be open to possibility. Furthermore, our siblings are our best instructors in the art of flexibility and patience. As someone who has struggled with perfectionism, I appreciate how my brother Willie has taught me about the power of play and the significance of happiness

And even though I have a highly verbal, hilarious, and capable brother, I've also experienced the intense difficulty of behavioral struggles, self-injury, and violence. This being the case, I can relate to siblings whose brother or sister may simply seem “different” from others, as well as to siblings whose brother or sister needs intense levels of support and behavioral intervention. 

In short, being Willie's sister has helped me to appreciate the good stuff and let the rest go. And that is what I'll take with me into this event. Whether our group is a “success” or not, what matters is our willingness to show up, to acknowledge that we have something to offer one another. 

In a sense, we special-needs siblings are brothers and sisters to one another as well. We're a part of an ever-growing family, standing in friendship and solidarity, empowered to see past appearances. And when we're willing to make an honest attempt to be present to one another's lives and stories, the possibilities are boundless.