Truthfully, autism is never my friend, but today was one of those days where I wanted to punch autism in the face.
Triggers have always been a part of our autism world. As much as we try to avoid them, they rear their ugly little heads often, and all too often when we least expect it. Our eleven-year-old daughter Lilly was diagnosed just before she turned three, and over the last eleven years, we have seen triggers come and go. Most of her early triggers stemmed from her OCD. She would line her toys up all over our house; windowsills, the floor, the kitchen counters. If anyone dared to move one, or something accidentally got knocked over, she would explode; screaming, crying, stomping her feet and hitting anything and anyone she could reach. She was and still is (to a lesser degree) very possessive of her belongings. She would visibly tense up if someone came too close to her things; she was so afraid that someone would throw a monkey wrench into her little organized system that made sense only to her.
A lot of Lilly’s triggers have been predictable. Sensory issues such as loud noises and bright lights are common causes of meltdowns for kids who have autism, and we have had our share of those. Then there are the triggers that come out of nowhere. We have seen a few of these in the last year. Things that never bothered her before now provoke major meltdowns: losing at board games, or any game for that matter, or not being picked for something at school. The thing about these triggers is that she doesn’t just blow up, she perseverates on them; sometimes for hours.
When they happen at home, it’s hard but also easier to manage. We’re on our own turf, and we’re the only ones who have to deal with it. When they happen in public, it’s a whole different story. I’ve grown beyond the point of being embarrassed about it; now I just go into survival mode. Try and calm her down and remove her from the situation if I can- that is the priority. But it’s not so easy in places like a crowded gymnasium.
Today was one of those days – a trigger happened right in the middle of a vocabulary parade at school. Two kids from each class were awarded prizes for best costumes, and Lilly wasn’t chosen. And to make it worse, her best friend was.
I knew it was going to happen the minute they pulled her friend aside to take her name and have her sit in one of the winner’s chairs. My kid stopped, confused. One of the teachers motioned for her to go sit with her class. She started stomping her feet. Again, the teacher pointed to where her class had begun to sit down. The stomping intensified, and the yelling began. I knew what was going through her mind. Her friend got picked- why didn’t she? Even over the chatter of the crowd, I could hear what she was saying. “Winner! Want to be the winner!”
Her teacher came over, took her hand and led her back to the class, and all the while she’s stomping, yelling and pointing to where her friend was sitting. It felt like I was watching the whole scene in slow motion. I was torn between climbing down over people in the bleachers to get to her, or just letting it play out and hope for the best. Would I make the situation worse if I went over there, or would it upset her even more if I didn’t?
I watched intently from the sidelines as the yelling turned to sobbing and my heart ached. We’ve been working so hard with her on this “winning” thing, where she takes not being chosen so personally. We’ve done social stories, role-playing games, modeling good losing behavior, and reassuring her that she will be picked for something else another time. Yet every time we think we turn a corner on this behavior, something like this happens to set her off: something unexpected that we can’t prepare her for ahead of time. I could see her trying so hard to pull herself together, and when she looked up at me in the bleachers, I gave her a huge smile and two big thumbs up. In reality, I wanted to sit down and cry with her.
I can’t always be there to remove my daughter from a situation that will upset her. She’s going to have to learn to deal with losing, not being picked, or any other trigger that might pop up in the future; that’s part of life. It’s part of the journey of teaching her how to live and function in the real world, but parts of that journey, like today, completely suck.