Ethan has sensory processing differences. He has been in therapy for more than a year, but he is about to be untethered from Amy, his OT. She said she still sees his differences, but that they are not holding him back from participating in his life, and that he really would not qualify for further services. Which are free, by the way, through Early Intervention.
When she first began seeing him, at 11 months, he screamed at a deafeningly high pitch through every diaper change, as well as on every car ride. He refused to get on or into a swing. He didn’t crawl on his hands and knees, but rather “army-crawled” everywhere, dragging himself by his elbows, once through several feet of bark chips at the playground. He didn’t sleep, wouldn’t nurse, and cried through every transition, even simple ones like going outside for a walk.
These days, at nearly two-and-a-half, we are most likely to get kicked or bitten at the changing table. (Yes, that SHOULD be enough incentive to potty train, but here we are.) At a crowed event, he hides or screams or tries to get away, often pulling down every decoration, plate or knick-knack in his reach. I am sweating or in tears by the time we leave a place where other children seem to be playing happily. He refuses dinner more days than not, and he is too rough with his baby sister.
While, strangely, he actually is improved, I’m not sure I agree with Amy’s assessment that he is fully participating in his life. But, finally, I am fully participating in it.
I had thought all along that I supported his sensory processing diagnosis. After all, I took him to occupational therapy every week, had Amy to our home. I bounce him on a ball, have him carry heavy things. I take him outside to play, run, climb and jump every single day he is home with me. I read the Spirited Child books, 1-2-3 Magic, The Out-of-Sync Child. But as he got older, and his quirks and behaviors became, well, “behavioral,” and he seemed downright defiant, I succumbed to the idea that he is simply bad, oppositional, difficult. We did Supernanny-style time-outs in the corner. I screamed at him. We withheld toys, affection and food to get him to do what we wanted. I fought — I fight — with my husband over the best discipline. We started looking for a psychologist.
And then I came across another book, The Sensory-Sensitive Child. This book is more than exercises to integrate the child’s senses. Rather, it implores parents to believe that their child is trying to please them, trying to “be good,” but simply, in many cases, cannot succeed. Sounds are overwhelming, leaning backward on the changing table is destabilizing. A simple touch from my son becomes a slap because he does not know where in space his arms are; his brain does not know how hard his hands must push to get my attention.
It sounds like science fiction, but if I am to forge a relationship with E, I have to believe it all. And for some reason, even though I was playing the part of the supportive mom, I didn’t, deep down, believe he has a disability. After all, it is invisible to everyone else most of the time.
So, E., I just wanted to mention: I believe in you. I want you to be successful, and when you are not, I want to know why. That doesn’t mean you can run the house, but it means that I will provide guidance based on my curiosity about who you are, today. And today. And today.