The Funnel Effect

Yesterday was a good day.

Milo and I met some friends at a nearby water park. We planned to get there when it opened, but I got lost (the Maps on the iphone 5 suck) and had to feel my way. Milo was surprisingly patient as I made the same wrong turn twice. He walked barefoot through the parking lot, waited in the ticket line and then wisely went to the most popular and most aggressive ride first, before the line built up. I hate amusement park rides of any kind. They make me nauseous and disoriented. Knowing this and knowing that the most exciting rides require double riders, Milo found another single rider and made his own fun.

We were at the park for more than 7hours and he never once complained. He rode every ride that interested him, ate lunch calmly, took it in stride when he found out that the snow cone booth wasn’t open and even made a new friend while jumping off the side of the pirate ship. In the soak zone he choreographed a “3-D” movie using the curtain of water that fell over the fiberglass couch. In the wave pool he positioned himself on the edge of the whirlpool line so he would feel the tug but not quite get sucked in.

His favorite ride was the Dragon’s Den because it is pitch dark and includes a large, fast funnel. Milo loves the surprise of getting caught in the swirl and then dropped into the light of day.  It’s a metaphor for his frustration, his confusion and his rage. But if you ask him,  he’ll tell you that the funnel “is just so AWESOME!!!!”

He was cooperative when it was time to leave and gave me a thoughtful interpretation of the new Macklemore song about marriage equality and gay rights.

“People  love who they love and they should get to marry whoever they want to marry. Well, except that you shouldn’t marry someone who is blood related to you because then your kid might only have one eye.”

We stopped for gas as a menacing thunderstorm moved in. Milo, who is ironically unnerved by stormy weather, was encouraging as we drove through the pounding rain. “You’re doing a great job Mommy.” After taking a long look behind us he said, “It’s dark where we came from, but there’s blue sky ahead. So I’m just going to keep looking forward Mommy.”

Today was a bad day.

Milo woke up wanting to play Minecraft but it wouldn’t load on our computer. This caused a screeching meltdown that led to him asking us to find a way to kill him that “wouldn’t hurt too much” because his life, “has no meaning.”  All before 9 am.

By 10 o’clock we were on our annual 1/2 day canoe paddle with close friends on a lake we love. While zipping his life jacket Milo discovered the emergency whistle.

“What’s this for?”

“You blow that if you need help, if you’re in distress.”

“But I’m always in distress.”

We’ve had a record amount of rain and the lake bottom was particularly squishy. Milo’s attempts to muck around in the water were more arduous than carefree and he hated it. He went in and out of the cape, uncomfortable in either place. Eventually he blew his whistle. We towed him back to the dock.

There was screaming over food, his wet bathing suit, the indignity of being alive.  There was a shower of stomping and fury.

Then, miraculously, Minecraft loaded on my phone and we had a short reprieve. But a visit with some out of town friends meant Milo climbing all over my husband, chewing on my husband’s clothing, complaining loudly, rudely and incessantly about . . .what? It wasn’t exactly clear. What was clear was the fact that Milo seemed desperate to crawl out of his own skin. And this discomfort swirled and funneled into rage until Milo bolted from the house with his hands over his ears yelling about Buffalo wings.  My husband went to dinner without us and I took Milo home.

Of the 15 hours that Milo was awake today, 10 of them were spent in distress. Imagine the racket if he had an actual whistle on him the entire time.

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We Dream of Water

Milo almost drowned twice before the age of two.  The first time, he was laughing and splashing in the bathtub with his sister. And then he was flat on his back on the bottom of the tub. His hazel eyes wide open and curious. He showed no signs of distress. It was eerily peaceful. His sister and I stared at him briefly, not in horror but in wonder, then I reached in and sat him back up. He laughed.

The second time was at the pool. He was sitting on the middle step in the shallow end, watching the older children play. My husband and I were talking to friends when Milo silently slid down onto his back. Again he was face up under water, his eyes wide open, his body strangely peaceful, as if this happens from time to time and it’s not only normal, but pleasant. My husband scooped him up and held him to his chest. Milo laughed, again.

When Milo was almost 4 we visited some friends at a house by a large river. Several of us were gathered on a dock, waiting to take a speed boat trip to a nearby town. Milo wore a life jacket over his clothes.  He crouched down to examine something in the water, reached toward the river and fell in face first. The life jacket came up behind his head like a pillow and prevented him from lifting his head out of the water. Again, he didn’t thrash.  This time I jumped in, crouched under him and lifted him up over my head as I stood. My husband was on the dock and took him from me. I was extremely  upset. Milo thought it was funny that I was wearing clothes but soaking wet.

Milo learned to swim easily and spends whole days in the pool. He particularly loves to go off the high dive, and when that’s not available, the low board. He doesn’t  just love to smash his body hard against the surface of water, he needs it. He seeks it out. He will fearlessly jump off any extension over water — a ledge, a rock, a wall — without concern for depth, because the moment of impact is soothing.  I’ll say that again, Milo finds the hard smack of water, its dominance, authority and elemental ferociousness soothing.

I love a hot bath, a hot-tub, swimming in a lake, wading into a waterfall’s spray, scrambling over the slippery rocks of a fast moving stream. I love water’s gentle baptism, its comforting wash. My favorite landscape on earth is the deep damp of Western Oregon. I would gladly live under a veil of dew. But Milo can’t resist a downpour so strong its torrent is horizontal. Milo prefers to be slammed.

We go to the beach every summer with friends. Everyone enjoys collecting shells on a long walk, jumping the waves and swimming out past where they break. Everyone but Milo. He chooses to stand so that he will be knocked down. He moves with the tide, inching his way in or out so that he is consistently positioned precisely where the wave is guaranteed to clobber him. He points and shouts at the ocean, like a child Prospero, demanding the water’s notice.

Milo is not one for a bath. But he loves a strong shower. Among the grab-bag of techniques he has learned to quiet his mind is meditative breathing. He does this with his father every night before bed.  Yesterday I found him sitting in the lotus position on the floor of the shower, his eyes closed, his breathing long and slow. Water pounded his head, his bottom covered the drain. Water was sloshing above his knees and leaking over the threshold.  The bathroom floor was flooding. Milo was the most peaceful he had been all weekend, not because he didn’t notice the hurricane he had created but because that tempest made him comfortable.

I allowed myself  a moment to marvel at his ability to create an environment that not only mirrors what’s happening in his head, but an environment that feels natural to him.  I allowed myself a moment to admire his pretty pink body, his pudgy fingers resting on his thighs, his broadening shoulders held upright and proud.

Then I flipped on the light and shouted, “Milo, there’s too much water, everywhere.”  He opened his eyes and laughed.

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SID Vicious

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!”

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