Jul 25, 2013 0 Share

The Challenges and Joys of Being a Sibling, Part II


The author's brother at the piano.
Photo by Donna Fischer

Continued from previous column. 

The long-awaited day has come; the moment I've been waiting for is at hand. I'm presenting at the 44th Annual Autism Society of America Convention, leading a seminar entitled “The Challenges and Joys of Being a Sibling (And How You Can Help).” In preparation for the talk, I asked myself, What are the toughest challenges faced by siblings of individuals on the autism spectrum? In response, I'd created an outline of five top sibling challenges, along with relevant personal stories to correspond to each point. Before I begin speaking about the gifts my brother has given me, I know I have to be honest about the hard things. As a sibling, I've experienced firsthand the sense of discomfort that arises when someone starts going on and on about the gifts of autism without first being honest about the challenges. 

Painting a true picture of our family's life means talking about the stories I'm most inclined to hide. The time I smashed my brother's antique guitar in anger, or the time Willie bit me on the leg during an out-of-control meltdown. Those weren't exactly our finest moments, yet I know they can't be left out of this presentation. Sharing these stories makes me feel vulnerable, yet that vulnerability is an open door to connection. With each account, I can see participants nodding; some are wiping away tears. I can sense them thinking: It's not just me. I'm not the only one who loses control of my temper, even though I love my sibling so much. I'm not the only one who's scared of an uncertain future, of what may (or may not) happen tomorrow. And I'm not the only one who struggles to be patient and kind today. 

The sense of empathy flowing between us is astonishing. But what I don't expect—the true curveball of the talk—is the way the audience members jump in and participate. Before I've finished the first point in my outline, a hand goes up. And then another. I'd allotted time for questions at the end of the session, but when the second hand goes up, I let go of that plan.These questions are heartfelt, and I don't want to defer them. Grandparents ask about how to cultivate strong relationships with each grandchild. Parents ask about how to talk with their children about the future, about the possibility of one sibling providing care for another. Fellow siblings confess their fears and worries. 

One sibling tells the group that, while she's looking forward to her first day of college in the fall, she's also anxious about the fact that her whole family (including a brother on the spectrum) plans to be present on move-in day. She loves her brother and wants to include him in this new chapter of her life, but she's concerned about navigating her own experience of moving in to college as well as trying to support her brother. My heart goes out to her, and I offer a few words of solidarity and support. Then other parents and family members jump in with suggestions and insights. They ask helpful questions, such as: Could you discuss a specific game-plan with your parents beforehand? Could your brother visit the campus on a different, less chaotic day? Alternately, could you see ways in which his presence on moving day might be beneficial? I stand in awe, and I know that I'll look back on this unexpected dialogue as my favorite part of the presentation. “The most revolutionary thing one can do is introduce people to each other,” writes Glennon Melton, and in this moment, I couldn't agree more. 

The 75 minutes fly by; I've skipped whole blocks of text in my outline, but I couldn't be happier. In closing, I display a photograph of my brother playing the piano, and I tell the group about Willie's gift for music. Suddenly, there's a lump in my throat. When I open my mouth, the words flow out, unscripted and true: “When Willie plays the piano, he plays from the heart. I wish you could hear it. It's the most beautiful sound.”