Saturday, May 29, 2010

Taste-bud chops


Now that he’s nine, I rarely call my son by the nickname Fluffy unless I’m writing about him. I call him by a host of other nicknames--Scoopie, Fluters, Tito, Sweet Pea, Muffin, Goo Goo and, yes, sometimes his own name when I want his attention during a lesson or at the park or when I’m in the kitchen trying in vain to figure out what he might deem acceptable for lunch. I’ve heard that there is a typical narrowing of the food choices that happens around 8 or 9 and continues for a few years before it starts to expand again around age 11 or 12--something about an explosion of taste buds which confers a different, more intense experience of taste. Apparently, it takes some time to get used to. It’s not true for all kids, of course, but it’s an apt metaphor isn’t it? Feeling more means shutting down until one gets a handle on how to integrate the new sensations, information, until one gets one’s taste-bud chops, so to speak. 

We lost him a couple of weeks ago. Fluffy. He was outside playing with the brother and sister who live across the street, something he does as a matter or course now, which is a small miracle--no—a large miracle considering the profound difficulties even a few minutes of peer interaction brought for most of his life. This spring, he and the kids across the street collect plants for spells they’re concocting (á la Harry Potter), gather clues for a spy game (á la 39 Clues). They have squirt gun fights on hot days and jump on their bikes to ride around the block just the for the joy of moving fast and unencumbered.

It’s a measure of how significantly things have changed that this goes on outside while Dave and I are inside together cooking dinner, answering the phone, putting those little circle things on the bottom of chair legs so we don’t keep scratching the wood floors. We check on him from time to time if it’s been a while since he tromped back in to get another bowl or search for his cape or refill his water bottle which may have lost a drop (the horror that his ever-present water bottle, the one that is slung over his shoulder at all times even when he wakes in the night to go pee, would not be filled to the tippy top!).

But on this day, we became aware of the silence out front, in our driveway, across the way on the dead-end street where the basketball hoop is hung at five feet. We went out to look, peer up and down the street, call for them, checking our watch. No sign of them.

We waited to see if they would appear after a lap around the block.

One minute.  

Five minutes.

Our neighbor was out of her house by then.

“Where are they?” I said.

“I don’t know.” She shrugged.  

For her, this was a weekly occurrence. She parents, admittedly, by benign neglect and her children thrive by this style. I’m used to it now but when we first moved here nearly two years ago, I would stare at her in open-mouthed fascination and alarm when she'd ring my bell to ask if I'd seen her then five-year-old son anywhere. She was an entirely different species.

“How long have they been gone?” I asked.

“Over fifteen minutes,” Dave stated grimly, already on his bike. His helmet strap was barely fastened before he took off up the road.

“Did they say anything about where they were going?” I asked, my pulse suddenly beating in my neck.

“Not to me,” my neighbor replied, lifting the scooter off the ground where it lay against her front steps.

I jogged to my bike and took off in the opposite direction from Dave, my body already beginning to shake. My neighbor joined the search in solidarity to us. She knows Fluffy. She knows this was not usual for him, for us.

I could hear Dave's deepest bellow, calling our son’s name, his real name, over and overOkay, Okay, I repeated to myself in a whisper as if settling a skittish pony, hoping the sing-song would block the frightening images and thoughts from my mind. This is my territory, after all, me of the Unwanted Thoughts Syndrome and Death Panic. I pedaled alone two blocks away, sucking in my breath as if through a microscopic hole.

What idiots we are, I chided myself as I scanned the passing yards.  How complacent we’ve become! This is my punishment for not tracking his every move! 

Suddenly, I saw L., the neighbor boy zoom by on his bike, his sister, M., in her Little House on the Prairie dress and apron, propelling herself behind him on her scooter. But where was Fluffy? And why did their faces look like that? Their mouths set in tight horizontal lines?

I stood up to pedal more athletically, my apron pushed to the side, my wedge-heeled sandals making a surprisingly good purchase and then I saw Fluffy with Dave come into view from the far right, riding their bicycles side by side like any other outing and my whole body did this fluttery thing as if the moth of dread had lifted her wings and flown away.

There is the gift in crisis, a clarifying point upon which all but the essential falls away. When I first found out about Fluffy’s autism, I didn’t struggle with creative angst, career confusion. I didn’t give a shit what I looked like or whether you agreed with what I did and said and thought. I was an instrument of my son’s needs. I would never have lost track of him. I didn’t let myself stray from his side. It was too risky. Fluffy didn’t have discretion, the ability to take in his surroundings, make sound decisions, respond appropriately or safely to other children. I wasn’t going to put him or them at risk.

That was five years ago. A lot has changed since then. Fluffy has grown and changed in remarkable ways. We’ve both integrated a lot of new information, new sensations, stepped into larger interior and exterior landscapes. The gift of this time comes not from laser focus and necessary crisis perspective but from navigating complexity, grappling with my sticky relationship to trust, in myself, in Fluffy, in the world, tending to myself and letting myself stray because more and more of the time, the situation isn’t risky. Even on that day.

Once my heart-rate returned to normal, rules were clarified, acceptable territories were clearly mapped and community service was doled out to make up for the transgression. He was just being a kid, exploring the world of his imagination, breaking some rules, pushing the boundaries, scaring the wits out of his parents, yes, but still, just being a kid.

Since then, there have been many late afternoons when Fluffy is outside with the kids across the street and Dave and I are inside, making dinner, answering the phone, putting those circles on the chair legs. Because aside from Fluffy being safe and sound, this is the part of the story I like best: the lesson of that time was not about complacency, idiocy, punishment, or contraction. It was about riding the moments of uncertainty and returning to a place of expansion. I guess you could say, we're finding our taste-bud chops which can look pretty ordinary to the untrained eye.

Then again, maybe it is ordinary. Extraordinarily so.  



  1. Hooray for expansion (and also for the image of you peddling furiously with wedge heels and your super hero apron flapping in the wind)!

  2. This was such a fantastically visual essay -- Fluffy and his water bottle, the two independent children, your husband and his bike helmet strap, your wedge-heeled sandals, the children's grim mouths. I just loved it -- and what an important transformation -- the whole contraction/expansion --

  3. "he lesson of that time was not about complacency, idiocy, punishment, or contraction. It was about riding the moments of uncertainty and returning to a place of expansion." I love that!

  4. What a wonderful piece! I think we all wrestle with the safety issue--we want our kids to be outdoors and independent, but what are the right boundaries?
    I am so happy that your son is able to have so much freedom and yet be safe where you live, and despite his issues!

  5. My heart was in my throat. I have been there too often with Nigel. I know the moth of dread and the moments of uncertainty. Still working on the place of expansion. But you've made it a little easier for me by identifying it. xoxo

  6. This is beautiful. I am in awe of how far he has come.