When I was a child, before anyone knew anything about sensory processing, I was simply a miracle. A premature baby that managed to make it against all odds. And when I started demonstrating odd quirks, everyone chalked it up to side effects of only being half baked. But I remember vividly the looks of disdain that I would receive, coupled with comments about how ludicrous it was that I was so out of touch with things as basic as day to day bodily functions. Was my stomach ache because I was hungry or constipated? How could I not know if I needed to use the bathroom? Why did I insist on walking on my toes when the surgery lengthened the muscles adequately? Why wouldn’t I participate in group activities? Why did everything scare me? Why was I so stubborn about washing my hands? Why did I always wake up bleeding, having clawed myself in my sleep? (I would never admit that I wasn’t asleep…) Why did I always retreat into hiding, managing to fall asleep in the most unusual locations? I spent twenty five years feeling like a failure, an oddity, a freak. I couldn’t answer the questions, and it only terrified me more when I began to realize that other people slept through the night without problems. Other people could effortlessly prepare dinner, handling and cutting the ickiest, smelliest foods without a second thought. I could barely function in the world as an adult, and I felt like I was going crazy. I became deeply depressed, and my physician kept medicating and medicating me to no avail. I wasn’t suicidal anymore, but I certainly wasn’t happy.
I went through the motions, pretending to be normal. Pretending to be happy. I got married. Had kids. But I was losing it. I finally got connected with a therapist who talked with me instead of just medicating me. And she uncovered thick roots of anxiety, deep seated fear that I hadn’t even realized was there. I wasn’t facing simple depression. I was sad because I had given up trying to conquer my fear. And yet the SOURCE of the fear remained obscure. Proper medication and talk therapy helped to some extent, but true healing didn’t begin until my second child received an unexpected diagnosis around 4 years of age. I had never heard of Sensory Processing Disorder. But as I read about it, and learned how to help my son, and escorted him through therapy, a light dawned. THIS was me.
I had so much trouble understanding and describing what did and didn’t hurt, because, like my son, my brain didn’t send and receive signals properly. When I watched my second son (also diagnosed with SPD) tumble head long off a six foot slide and jump up laughing while blood ran down his cheek, I understood. When Allen peed his pants three times his first week in second grade, I understood. When I look down while watching TV and see blood on my hands from clawing my chin, I don’t panic. It might not “make sense”, but it is what it is. I am not “crazy” or “lazy” or “stubborn” as I had been told so many times. I am simply unique. My sons and I have different neural wiring. Allen and I both use sleep as a retreat, hiding from the world. Nicholas uses the solitude of the night to explore the world without the painful intrusions of noise and light. Allen and I would go barefoot 24/7 if the world allowed. Nicholas screams if you take his socks off for a bath. Both boys love splashing in a pool of water. I think I would gladly go the rest of my life without bathing. I used to dream that I could levitate so that I wouldn’t have to touch the ground when I walked. Nicholas stomps his feet with a resounding thud every step he takes, as if checking to see if his foot is still attached to his leg. Both boys run full steam into the wall, just to rattle their bones and reorganize their thoughts.
I’ve learned when I, or my boys, need more or less stimulation. We live in a virtual therapy gym. An indoor slide, exercise balls, balance beams, stairs, scooters. But no swings. None of us can stand them. We have weighted blankets, and a special basket for hiding in. We have tubes to crawl through, and a harness in Nick’s chair to encourage his body to hold still long enough to eat. And we are learning to accept the world the way we feel it. To make the most of it. And sometimes, to even enjoy it.