Sensory Integration Disorder. It’s also known as Sensory Processing Disorder. It’s a relatively new diagnosis, compared to, say, TB or Pleurisy, but I suspect people have been suffering with it for generations. It’s complicated in that every afflicted person manifests their discomfort differently, but it’s simple enough: your nervous system has trouble with the information taken in by one or more of your senses. The confusion inspires a fight or flight response. My nephew can’t bear the smell or taste of fruit, it makes him sick, and he runs from the room. I can’t stand a light touch, it makes me want to punch you. I’m sure you know someone (or you are someone) who gets hostile at loud noises, or biting into a fig or a nut. It can be about texture or taste. It’s common among people on the Autism spectrum. Milo has it too.
The mild version: he wears only elastic waist sweat pants, crocs and t shirts without tags because everything else feels oppressive. He never registers the cold or the heat. He doesn’t recognize his own teeth chattering or the headache from sun exposure.
The extreme version: during dodgeball at recess, he gets hit and gets out. He fights first, kicking whatever or whoever is closest, then he flees. He runs out of his shoes and takes off out of the school playground and up the path to a nearby public park. This sets off a chain reaction among the playground monitors which results in the school Principal and a police officer scurrying to the park. They find Milo on top of a large play structure. He’s barefoot and screaming about the injustice of dodgeball. The moms and babysitters with toddlers have retreated to the other side of the playground fence. They stare. Milo’s classmates are back at school, hushed and baffled while their teachers and other staff pace, waiting for news.
In what seems like an innocent recess instant, Milo has brought the action of an entire elementary school and a city park to a screeching halt. He simply cannot tolerate an object flying through the air and hitting him. In that moment when everyone else’s life is hostage to his, he is still the person in the most amount of pain. And it will take time and patience for him to calm down, climb down and resume the school day.
This is exhausting. For everyone. And it’s absolute murder on his reputation, something he knows and feels but won’t articulate until he is in bed that night. Yet, even then, he won’t burrow into me seeking comfort, he will flatten himself against the wall, preferring its coolness than my warm touch and he’ll cry and ask, rhetorically, “why am I so hard to like?”
There’s so much cognitive dissonance for the Bipolar child. At nine Milo lacks the ability to observe his disorder apart from himself, to study it, analyze it, strategize for it, and most of all, accept it. That’s his heartbreak. Mine is watching the spectacle and knowing it costs him socially. If you can’t play foursquare because the motion of the game causes you to lose your shit on the playground who wants to be your friend? And, when you do lose your shit and become a whirling dervish of unpredictable, accidental violence, isn’t it ill advised to be your friend?
There’s help. OT. Occupational Therapy. It’s a magical combination of desensitization and nervous system stimulation. He swings while a ball is thrown at him. He hides under heavy pillows. Plastic bristles lightly brush his arm. It looks like Crossfit without the kettle bells. Or a room set up for people on LSD to enjoy with a ball pit, and a slide. Milo loves it, even when it ignites his SID and sends him screaming around the room. He goes back for more. Because that’s another characteristic of SID, seeking. Seeking the extreme version of the touch you can stand. It’s maniacal. For Milo, it makes perfect sense.
Imagine having a toddler with soy milk skin, wide, green, lashy eyes, wispy dark hair that stands on end and pudgy arms and thighs. Delicious, right? Now imagine you can’t kiss or hug or squeeze him. At the same time he compulsively slams his entire body into yours, while you’re cooking, or carrying water. He runs full speed then jumps onto your sleeping husband, landing, of course, on your husband’s crotch, a daily rude awakening. He gets right up in your face and yells. He tugs on your ear as if pulling an apple from a tree. He walks right over your naked foot without noticing.
I trained myself to sniff him. I get really close and I take a deep breath. He can stand that although he always reminds me, “no kissing.” But with OT he can stand to be sniffed. And after 3 solid years of OT he will, on occasion, slip his hand into mine, climb onto my lap, or lean into me gently.
I’ve also trained myself to get out of the way.
Milo chews incessantly. His clothes, paper, the charger chord and the headphone wires. Rocks, sticks, styrofoam. So my purse is full of gum. Duh. I can’t believe how long it took me to figure that out.
Part of my job is finding a more socially acceptable way of accommodating Milo’s craziness. (Or, what would have been called his eccentricities if he were a character in a 19th century novel.)
When I was a 12 year old Jewish girl (now I’m a 48 year old Jewish woman) with a giant nose my parents used to cut out pictures of Barbra Streisand for me to admire. It didn’t work, I had rhinoplasty at 18, but I appreciated the thought.
So we introduced Milo to punk rock. Thrashing, falling, charging, slamming. You can do it barefoot while chewing gum. For us, it worked.
Sometimes the best approach to Milo’s life is to make it one big mosh pit.
“Hey Ho, let’s Go!”