Originally published on Kveller 1/3/2017
We got out of our car at the aquarium, and before we even reached the entrance, I knew we had made a mistake. It was early in the morning so it was not yet busy, but it was chaotic, loud, and over-stimulating. Everywhere we looked there were colors, sounds, animals, and flashing lights. People were shouting at us (words of greeting, but not quiet ones), taking our picture, stamping our hands. Music playing, lights blaring, food smells coming from everywhere. And in the middle of all of it, my precious 5-year-old son, holding his ears, closing his eyes, stamping his feet, and then melting to the ground.
Of course, we had prepaid for the tickets. Leaving before we entered would be a definite loss. And while I debated playing the “Fragile X Card,” where we beg the guest services staff to give us a refund because our son has a genetic disorder, we had our 7-year-old typical son to consider too, and he was excited for the day. Besides, this was our family outing for the day and we didn’t have a plan B. It didn’t seem fair or right to back out at that point.
We made it past the entrance—somehow—and then the park was more relaxed. It was still noisy, however, especially as we approached each exhibit. Only after we walked into the dark area of the dolphin tank, as tons of children screamed in delight, I remembered that I had brought my son’s noise-reducing headphones. We don’t use them often at home; I had just packed them in the bag on a whim. But I know he’s used them at school assemblies with some success, so I took them out of the bag and without saying a word, I plopped them on his head.
The change was immediate. He was calm! Engaged! Happy! My child was enjoying the aquarium! I couldn’t believe my eyes. I couldn’t believe his ears! My husband and I exchanged pleased glances and we took a sigh of relief. Peace, finally!
And then, as I looked at him again, I saw him in a different light: my precious child, my child with severe disabilities, my child who is wearing headphones. I started to notice other people noticing him, seeing those bright yellow headphones sticking out of his head. I realized that this instrument of relief was also an external label of disability and difference.
I must admit, it hurt. I immediately started to worry: Would anyone penalize him for his difference? Would he notice the stares? Would his brother feel the stigma, too? It was a tiny bit of “the dream of normalcy” disappearing yet again.
Thankfully, the moment of self-pity was over quickly, my fears dissipated, and I too was able to enjoy the aquarium, and to enjoy my children enjoying it. My son wore the headphones most of the day and seemed so happy. I know that I need to celebrate that experience, and to encourage more like it, even though it may still be hard for me to see my son like this. In the end, though, I am trying to remember that if seeing him “like this” means seeing him happy, engaged, and calm, then I’ve found the right aide for him (for now) and we need to celebrate our success.
Jewish tradition reminds us, “Do not look at the container; rather see what is inside of it.” It’s the Jewish way of saying, “Don’t judge a book by its cover.” I hope my son will proudly wear his headphones when he needs them, and that he can experience beautiful moments because of them. I hope that people do not look at him and judge just based on what they see. And I hope that I can learn this important lesson as well.