Staying Present, Staying Sane
During our Thanksgiving holiday, I made the radical decision to be present for my brother. This may sound like a simple thing, but there’s complexity to it. First, like many young adults on the autism spectrum, Willie is good at going off by himself. There are times in which he needs solitude, to be sure, yet there are also times in which he longs for companionship . However, Willie doesn’t usually articulate that need, so it falls to those around him to discern it.
Next, the choice to spend time with Willie often means stepping away from the crowd myself, and this can be tricky when I want to be a part of it all. But being Willie’s sister helps me to notice what is going on “at the margins” … and this means that I see what my brother is doing when he’s on the periphery of our family life. So, instead of pursuing additional projects around the house during the holiday, I decided to be more intentional about “tuning in” to Willie; that is, to be open to times in which he might welcome my company.
One afternoon, this meant that I put off checking my email and listened to Willie play the piano instead. He ran through his practice pieces two times each, and I rested beside him. The late-afternoon sun was filling up our living room; everything was quiet save for the music. In that half hour, I heard him with my whole heart. Studying his profile, I was amazed at how adroit his fingers were as they danced over the keys. I couldn’t resist getting out my camera, even though I knew I’d fail to capture what I loved most about the scene. As I watched him play, I thought: We’ve each found something that makes our fingers fly. For me, it’s writing; for him, it’s music.
I was—I am—very proud of Willie. Hearing him play his current favorite song (“Carol of the Bells”) showed me how much he has improved and deepened his playing in the last year. And the next morning, when he went from composed pianist to a borderline meltdown, I was able to remain calm within myself. And that is something of a miracle to me, especially after my own loss of control  in the wake of one of Willie’s meltdowns last month.
During Thanksgiving week , I experienced two different borderline meltdowns with Willie. In one instance, I was the point person to help him regain calm; in another, I stood by, ready to help my aunt and uncle if they needed me. In both cases, I had the opportunity to live the lesson I’d learned from my own mini meltdown the week prior: Instead of judging Willie for losing control, I need to manage my own temper.
What did I tell myself as I stood there with Willie? Staying present is how I stay sane, I reminded myself. Just stand here. Let there be no stories of an imagined future. Let there be no judgments about the past. Just be here, now, with Willie. Just breathe in and out. Just notice that, in each individual moment, we are both all right. No matter what happens, I believe that we will both be “all right” in the deepest sense of the phrase.
And afterward, I realized something amazing: Coaching myself to be present to those difficult moments with Willie enabled me to feel more joy during the happy times. For example, one evening we looked at a dog book together. There was nothing spectacular about it, but it was inexpressibly beautiful to me. If I had to translate what I felt into words, it would be something like, “I can see absolutely nothing wrong with this picture. I would not change one single thing.”
Likewise, on our last morning, Willie was walking through the kitchen and saying, “I love … I love …” He kept trailing off, so of course my curiosity was piqued. “What do you love?” I asked. (Willie regularly makes statements such as, “I love computers!”) His unexpected reply? “I love Caroline.”