If I am being honest this was the moment I knew. This was the moment that I knew Sara was different. We were at a “Disney on Ice” production to celebrate her fifth birthday. We got there early as we found ourselves doing when we went to big “events” with Sara. Subconsciously we were already aware that she needed extra time to get used to new surroundings. We found our seats and settled in
Soon the arena began to fill up and eventually the lights were dimmed signalling the start of the show. Instinctively I looked at Sara (multiple times in fact) subconsciously looking for signs of distress and was reassured by the fact that she seemed to be fine. Then the music began and the curtains pulled back allowing the Disney characters to spill out on to the ice. The music got louder and the strobes lights started flashing around the arena, creating excitement and hype as the crowd roared. I was snapping pictures when I looked over and saw this:
There she was with her hands clamped over her ears. Not smiling. She had already climbed up on her Dad’s lap while I was busy taking pictures. I remember looking around at the crowd – searching for even one other child covering their ears. Maybe lots of kids were overwhelmed? But she was the only one. The only one. But the place was dark and crowded so I kept scanning the crowd, following the floodlights as they swept over the audience. I also remember tugging on Dave’s sleeve urging him to look around to see what I saw – just one child in a sea of hundreds who could not take her hands off her ears. Just one. Just Sara. But he was unfazed and shrugged me off, engaged in the show and unconcerned by her behavior. I think he actually said “Well…it IS loud” And yes…it was loud. But it was manageable. You eventually adapted to it. Looking around it was evident that everyone else could tolerate the volume. Everyone but Sara.
I remember taking the picture. It was like I needed to record it – much like a scientist cataloging research. I needed to be able to have it on file. Documented so that later I could say – this is when it started and I would have the image as proof. But even then I knew that this wasn’t the moment it started. Even then, I was aware that if I flipped through the files of my memories that there were many occasions just like this one. This wasn’t the moment it started, but it was the moment I was able to finally see it.
My concern lasted the entire show and continued for some time after that. But when the show was over she said she liked it. A lot. That quieted some of the worry. Eventually, we returned to a daily routine that had subconsciously been adapted to minimize these moments for Sara. We were unaware that by age 5 we had already begun to tweak her surroundings and experiences so that her struggles weren’t so evident. I was quickly able to slip back into the comfort of not seeing it so obviously and my unease faded away.
And there were many more moments like this one to come. Many more times where Sara was more sensitive to noise or smell or touch than other kids. Many more times when her behaviour caused other adults to look at us like “What’s with her?” Many more times that my husband and I looked at each other and said “What’s with her??” It took years (almost 6 years in fact) before we were finally able to fully see the impact that her SPD had on her life and get her the help she needed. But when I think back on her life…this was the moment I knew. I just wish I had known about SPD at this moment. Hopefully this blog will help other parents identify the sign earlier.