What My Son With Autism Taught Me After His Chorale Performance
I see their looks. I see their stares. I see their smiles bordering on a smirk. I see their patronizing high-fives. Sometimes, I wish I had a blindfold.
I hear their voices. I hear their silence. I hear the way they speak to him as if he were a young child. Sometimes, I wish I had ear plugs.
I feel my sadness. I feel my anger. I feel the ache deep in my heart. Sometimes, I wish I had no heart.
These feelings often sweep over me and settle on my chest, directly over my heart to the point of suffocation. But then the feelings go as quickly as they came, leaving me to breathe easy once again. These moments and these feelings are few and far between, but when they come, they leave a scab that I tend to pick at for days until eventually the scab heals with just a small scar visible only to me.
It was a hot summer day in a church built in 1825, which meant no Wi-Fi and no air conditioning. A group of teenagers gathered at the front of the church, sitting among the pews, giggling, chatting and warming up their voices. At the end of the pew, against the wall, sitting alone and seemingly unaware of the buzzing activity surrounding him, sat my son, Ryan. Ryan sat quietly looking over his music and preparing for the day’s performance while I almost vibrated out of the pew. His sensory system, which is often so heightened, seemed unaware of all the buzzing activity going on around him. In fact, for a change, it was not my son’s sensory system on edge, it was mine.
It wasn’t Ryan who wanted to bolt out that old church door to escape the feelings that overwhelmed him, it was me. As I sat in the church, with little to no air moving, my chest felt heavy. I wanted to run out of the room with my old friends, Denial and Clueless, who had slid in next to me on the pew when I wasn’t looking, to escape what my brain and my heart were feeling. I had been so consumed with my watching, waiting and worrying for what had always been, there may have been a few moments that I missed what really was.
As parents continued to arrive and the temperature of the church continued to rise, I felt my heart beating in my chest and a trickle of sweat began forming on my brow. I watched, waited and hoped with anticipation. Would one kid talk to him? Would one kid see him? Would he talk to one kid? Would he see one kid? After all, he just spent a week with these kids at chorale camp so it was reasonable for me to get my hopes up, right? Nothing. Not even a nod, a hello or an acknowledgement on either side of the pew. And although my heart was pounding and my sensory system felt like it was on overdrive, Ryan looked happy, content and fine. As always, it was my problem, not his.
But once the performance began, my son stood shoulder to shoulder with the rest of the chorale ensemble in front of the church. He blended in with the others. He didn’t stand alone, he didn’t appear “different.” There was no aloof stance, there was no awkward smile. There was just the music and his voice. Suddenly, I felt my heartbeat slow down and the church no longer felt so stifling.
Within the first few notes, the tears began to fall. Not his, mine. He immediately looked my way, seeing no one but me, and once he saw my smile, once he saw my tears of pride, his smile and his tears matched my own. You see, we have sat in many rooms together, the two of us, where no one saw him like I did. Where no one heard him like I did. Where no one felt him like I did. However, on this day, when his beautiful voice bounced off those church walls, I believe they all saw him, heard him and felt him as I always have. I had waited for that moment for a long, long time. Funny thing is, I don’t think Ryan has.
As he finished his song, there were smiles, there were high-fives and there were “good jobs.” Even after all that, a part of me still worried that their smiles, their high-fives and their “good jobs” may not have been sincere, that they may have been a bit patronizing because they saw “different.” But when I watched my boy take his bow then fight back his own tears of pride, I realized what matters most to Ryan is how sees, how he hears and how he feels about himself. Ryan spends little time concerning himself with how others perceive him. It’s a lesson we could all learn from him.
Had I worn my blindfold, had I brought my ear plugs, had I removed my heart, I wouldn’t have seen him, heard him or felt him, and there is no worry great enough and no pain deep enough worth missing that. As for their smiles, their high-fives and their “good jobs,” they may not have been insincere or patronizing, but, even if they were, I need to take a lesson from my son and recognize who and what really matters.
Once again, Ryan showed me it’s my problem, not his, and it’s a problem I believe he has already solved.
Follow this journey on The AWEnesty of Autism.