As a parent to a child with a sensory processing disorder, I spend a lot of time trying to understand the way my son experiences the world. One of the most challenging aspects of his diagnosis is my inability to understand the things that he sees and feels. Ask any parent and they will tell you that there is nothing more difficult than to feel helpless for their children. Helpless to really know what their children need and want and feel. Helpless to comfort them. Helpless to make it all better.
We live in a world that is so full of sensory stimulation. Everywhere we go we are surrounded by lights and sounds and sensations. And this sensory world is becoming more and more automated every day. There is no way to escape the sensory encounters that are all around us. And, for the average person this may be annoying or irritating. “Thank you very much automatic flush, but I would like to finish going to the bathroom before you splash cold water on my behind.” But to kids like my son, these sensory things are so much more than annoying. They are debilitating.
My son is always tentative to use the restroom when we are away from home. Away from his comfort zone. As a 4 year old on the spectrum, we consider ourselves incredibly lucky that he is already potty trained. Some kids on the spectrum do not potty train until they are much older. And, some children on the spectrum never fully potty train.
Imagine walking into a public restroom as a four year old. To a four year old a public restroom must look very different than it looks to an adult. The restroom is big. It is cold. There are people moving about in every direction. There is a line. There are people washing hands. People opening and closing doors. Toilets flushing. Hand dryers sounding. To any four year old this would be overwhelming.
My four year old walks into the public restroom and immediately uses his hands to cover his ears. He cannot handle the variety and intensity of all of the sounds happening around him. He cannot process this myriad of senses firing at one time. So he retreats in the way he has learned to retreat. He covers his ears. He removes the sense. He hears less. He feels less. He comforts himself. Except even in this comfort there is an un-easiness about him.
Then he walks into the bathroom stall and he is met with a dilemma. How can he cover his ears and go to the bathroom at the same time? The answer is simple, he cannot. And because it breaks my heart, and because I cannot handle the look of fear and helplessness on his face, and because I would walk through fire for my son; I gently place my hands over his ears so that he can free his hands to go to the bathroom.
He finishes going to the bathroom. I remove my hands. He is proud of himself and excited to return from the bathroom and announce that “he did it”! And in that moment another toilet flushes. And, an automatic hand drier sounds. And then all over again his face is overcome with distress from all of these senses. And so we quickly leave the bathroom. Quickly escapes this overwhelming room of senses.
This is just one of the many reasons why it is so much easier to stay at home. In our very own comfort zone. Where sounds are controlled and regulated. Where senses are not overwhelmed. Where we all feel comfortable in our own bodies.
After the diagnosis I would have lived forever in the safety and comfort provided by the walls of our home. I found reasons every single day to cancel plans and continue the hibernation at home. We lived in fear for a really long time. And then one day we slowly started to test the waters. We learned that with the right preparation and the right tools we could venture out. Day by day we became more comfortable with the things that we could and could not control. And so we went out into the world.
But, the truth is that the world is not sensory-friendly. And, as I think about my son growing older I know that he will no longer want his mom in the bathroom covering his ears. But, as he gets older his aversion to the sensory overload in the public restrooms may not change. So he will find new ways to cope. Maybe he will wear noise cancelling headphones. Maybe he will wear elastic waist pants so he can easily shimmy them down. Or maybe, just maybe, the public restrooms will evolve.
Maybe public restrooms will become more sensory friendly. Maybe we will learn to give meaningful consideration to those living in this world with sensory processing disorders. Not because it is the easy thing to do. Or the cheapest thing to do. But, because it is the right thing to do.
I cannot imagine what living in this world feels like for my son. It is a thought that is always in my head. I wonder and worry about all of the obstacles that he will face. I go into so many situations armed with an evacuation strategy. I do that because I have to. And there will always be situations we cannot avoid. Triggers that set him off. Places we have to avoid. But there are a lot of situations we cannot avoid. When nature calls; she calls.
The next time you venture out of your house, think of all of the sounds and sights and sensations and scents that you encounter. Register all of them at the same time. And then imagine, just for a moment, that processing senses is difficult for you. Maybe it makes your skin crawl. Maybe it scares you. So to cope, take one of those senses away. Close your eyes. Cover your ears. Plug your nose. That feels strange right? Like, you have lost something. Maybe you feel antsy. Unsteady. Because it is unnatural to take away your senses. To take away the way you process the world. But, what if you had to? What if that was your coping mechanism? What If you had to lose a sense just to go to the bathroom?
No, I do not know what if feels like for my son to go into a public restroom. But when I stop and try to imagine it; I just know that it needs to be better.