Feb 27, 2014 0 Share

Something to Talk About


Close-up of woman speaker with microphone.
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In the weeks ahead, I'm going on the speaking circuit, presenting and keynoting at three autism-specific events. In March and April, I'll be traveling to Bakersfield, California for the Kern Autism Society Conference, to Nashville, Tennessee for the Tennessee Adult Brothers and Sisters (TABS) Conference, and to Lisle, Illinois for The Arc of Illinois Convention. (If you're local to any of these areas, I'd love to meet you in person!) In each forum, I'll speak about my personal and professional experience with autism and special needs. I'll tell stories about what it's like to be a sibling, a caregiver, sharing the lessons that individuals with autism have taught me. 

It's an honor to present at these events, and I enjoy the entire process, from receiving the invitation to hopping off the plane and meeting people in person. (That is, except for booking plane tickets, choosing between the worst of itinerary evils.) Other than that, speaking at events is a dream come true. And yet each time I sit down to write and revise a talk, I'm daunted by the task at hand. What can I say that will be hopeful yet honest, personal yet practical? How can I walk the fine line between optimism and realism? I share from my experience as a sibling because I know it can help and encourage others, but it isn't an easy task. True, I've learned a great deal from my brother and other adults with special needs, but what I don't know remains vast as the ocean. There's still so much I don't understand about my brother's perspective, how his mind works, and how I can best support him. At such moments it helps to remember what fellow sibling Faith Jegede said in her 2012 TED talk, “Autism Through a Sibling’s Eyes,” “... How little we know about the mind, and how wonderful the unknown must be.” 

It also helps to remember that we're still living our story. I love a happy ending, but real life doesn't always fit into pretty boxes. I can share moments of beauty and illumination that I've experienced with Willie, but I can't truthfully wrap every sibling story with a bow and a flourish. When people ask whether Willie still struggles with aggression and self-injurious behavior, I can say that he's doing much better … and that he still has dark days. I can say that he's come a long way … and that he still has a long way to go. Just like you, just like me, just like any of us.  

Each time I present a talk, I take myself and the audience back to the time in which Willie's behavior was at his worst. Back then, the meltdowns seemed to consume everything in their wake. Our parents had to make a terrible choice. Keep Willie home, and stay together in darkness, or find a placement of some kind and enter a different darkness. They chose the former, and in hindsight, I'm glad they did. At the time, though, it hurt. No decision would have dispelled the darkness, but I was so fearful of what might happen if Willie stayed home. 

I love my brother, and I always will … and I went away to college, and I spent a summer living with my extended family. I stayed close enough to come home at a moment's notice, and far away enough to escape. It was the best possible solution in a very challenging time. And perhaps that's why family members approach me after talks, take me in their arms, and say, “Thank you,” through tears. Perhaps it's because they know I understand about choosing between two terrible options, knowing that both will break our hearts. Or perhaps it's because what underlies every story I tell is the fierce belief that—in those very old words: “ ... the light shines in the darkness, and the darkness has not overcome it.”