Can a missing puzzle piece scare you?
Have you ever seen a child in a wheelchair and been filled with compassion? Maybe you wonder…how hard is every day life for that child? How do they view themselves as a person? And if you’re a parent you probably think – how as a parent do you manage every day life and make it as ‘normal’ as possible for that child?
Now picture a different scenario. You see a child in a public place, maybe a store or a restaurant. That child begins screaming or flailing around for no apparent reason. So….is your first thought: SOMEONE needs to control that child! Why won’t their parent stop them? Or do you realize that you may be seeing another kind of disability? Not one that means a child needs a wheelchair, but one that affects their brain and perception of the world.
My son has Sensory Processing Disorder. His basic senses – sight, sound, smell, taste, and touch don’t function the same way a typical child’s would. He also struggles with proprioception – that is your body’s sense of where your arms and legs are. And he has a problem with his vestibular sense – that is the part of your brain that tells your body when you are dizzy or falling over. Every day I have to try and anticipate which things my son is experiencing that might be a problem for him. If the sun shines too brightly in my eyes, it’s only an inconvenience, but for my son, his brain interprets it as serious physical pain.
If too many uncertain and unexpected physical sensations pile up at once, he will have a massive meltdown that includes screaming, flailing, and sometimes violence like hitting or pinching. It is terrible to experience as a parent, but as we’ve worked with a therapist and learned more about his disability, I’ve come to understand how terrible it is for him. His brain functions differently and sometimes it overrides his mental control. It’s almost like having a seizure but it’s from a different part of the brain. He knows its not normal, and he feels great shame at his own inability to control his body and its responses to the world.
Today we were playing with one of his toy puzzles. It’s one of those wooden types with pegs and spots for each piece. He has played with it many times and loves it, but today….. a piece was missing. As soon as I noticed that, I began desperately searching, hoping to find it before things got out of hand. He noticed, began asking about it, and slowly my panic rose. We have gone through this many times before. When something visual and familiar like that cannot be ‘properly completed’ my son almost always has a huge meltdown. His sense of sight has a malfunction in his brain, which is called “over-reactivity”. When he has seen something a certain way many times before, and suddenly it doesn’t look that way, his brain interprets that as something very dangerous, very risky and upsetting.
Since the puzzle piece absolutely could not be found, my son began crying. I wrapped him up in a soft blanket to try and ease the panic. Due to weeks of working with him in therapy and at home, he was actually able to calm down a little bit. We have been working on expressing emotions in words rather than actions and I asked him, “How do you feel about the puzzle?” He thought quietly for a long time and then said one simple word that melted my mother-heart. “Fear.”
The puzzle was scary to him because it didn’t look right. And I understand how he feels. All humans know this sensation. When we see something that we don’t understand, or that does not fit our model of the world ‘as it should be,’ our gut reaction is generally negative. I have seen people react to my son and his struggles with the same kind of fear and dislike. It breaks my heart. But I also know that fear can be an instinctive response to the unexpected.
So ask yourself, is that child you see flapping their hands or repetitively rocking back and forth trying to distract people and be disruptive? Or are they someone (maybe with autism) who needs small movements like that to stimulate their brain and focus on what they are doing? Is that adult who keeps talking about how sad they feel just a negative, downer person who should be avoided? Or are they someone struggling with depression, trying to be honest about it and ask for help?
Puzzles with missing pieces can be scary if you have a certain type of brain. And people acting unusual can be scary if you don’t understand why. If we can all learn to understand and “normalize” the fact that different brains respond to stimuli in different way maybe the world won’t be so scary…. in many ways.
Our days and nights are harder because of my son’s Sensory Processing Disorder. A loud motorcycle driving by can upset weeks of calming and auditory processing work. But at the same time, we have special joys that come out of all this work. As we have been working on understanding emotions, we have used some of the ideas from the children’s movie “Inside Out”. The emotions there are represented by colors, with yellow for joy and blue for sadness. Sometimes my son will say he feels “red” when he is getting angry. Recently, he was doing a therapy session where he was in a stretchy hammock that completely cradled him. His sensory needs were so well met that he grinned with delight. Then we covered him with piles of stuffed animals and he sighed and said,
“What’s this color, Mommy?”
“What do you mean?” I asked.
“Loving!” he explained.
I don’t know what the color “loving” looks like, but if we can learn to react with sympathy and understanding, rather than with fear, to people who look and act differently, then maybe we will all see that color a little more in our lives.