Jul 18, 2013 0 Share

The Challenges and Joys of Being a Sibling, Part I

The author and her mother at convention.
Photo by Kerry Magro

I could say I have butterflies in my stomach, but that would be putting it mildly. The flock fluttering through my abdomen is more like … condors. Given the circumstances, though, I can't fault myself for feeling them. In this moment, I'm reading out our directions as Mom weaves the family minivan through downtown Pittsburgh traffic. We're navigating an unfamiliar city on a tight time frame, and I'm mentally rehearsing my presentation while praying that someone, anyone, decides to attend. 

All too soon, I see the glass facade of the massive David L. Lawrence Convention Center is looming above us. It's taken a great deal to get here—two flights from Alabama to New Jersey and a six-hour drive from New Jersey to Pittsburgh. Now, we've arrived at the 44th Annual Autism Society of America Convention, and I'm about to lead a seminar entitled, “The Challenges and Joys of Being a Sibling (And How You Can Help).” I've been planning and preparing for this day for the last six months, but I have no idea whether or not anyone but my mother will be in the audience. I just know that I have made it this far, to Pittsburgh, to the registration table, to Room 307. 

I know a few more things, too. That the technician who helps me set up my PowerPoint presentation is kind and encouraging. That holding the wireless remote presentation clicker in my hand makes me feel very mature and professional. That I just met Kerry Magro (fellow columnist for Autism After 16 and personal hero) for the first time. That my mother is sitting next to me with anticipation and excitement shining in her eyes. These are the things I know, so I cling to them. And as the clock ticks closer to 1:30 p.m., I remind myself of the most important thing: That there are actual parents and siblings entering the room and finding their seats. That it's a tremendous honor to be here, and that every person who walks through the door makes our long journey worthwhile. That I am going to share from my heart my life's story. That I am going to show up and give this everything I've got. 

In the session, I plan to cover issues such as sibling responsibility, rivalry, and rage. In sharing my family's stories, I hope to help the audience take an honest look at the stresses their families face. Yet at the same time, I want to emphasize experiences of joy and connection. How will I balance the two? I'm not sure, but I'm ready to try. That's good, because a woman named Wendy is introducing me, and there's no more waiting now. It's time. Though my hands tremble, I step up to the podium with a smile on my face. To begin, I give the group a brief overview of life with my brother, Willie. I tell them about his gifts and challenges. I introduce our mother, and I can tell the audience knows why. From the first, I see that they sense what I don't say in words: That my parents are my heroes. 

With the presentation clicker in my hand, I share photographs of Willie, of our family. I tell them the Snow White story, about what it means to discover windows into my brother's mind and heart. Those windows may be few and far between, but what I can see through them is unbelievable. But before we talk about the beauty of being a sibling, we have to be honest about the difficulties. We have to talk about … 

  1. The unfairness of sharing attention, and the temptation to keep score;
  2. Being a third parent, and taking on greater responsibilities; being our brothers' keepers;
  3. Feeling like we have left normal (and going to great lengths to fit in with the crowd, like keeping a clothing calendar);
  4. Feeling guilt or shame (and hesitating to invite friends to a sleepover);
  5. Learning to navigate acceptance and cope with the reality (or possibility) that we may be our sibling's full-time caregivers (and dealing with the fear that that role will be too much for us).

To be continued ...