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Autism Floats

Column: 

“When are we going to leave this hellhole?”

I am seated at a south shore beach on a hot August day as waist high waves roll in.  My oldest son stands before me, drenched and sandy and upset.  He slaps his thighs several times while he waits for my answer.  Around me are several high paying visitors from the mainland who are also curious.

“Five minutes.”

“Aw.”

Then he runs full speed back into a crashing wave and his brother.

The three of us go to the same beach every day at one-thirty.  The Big Boy (King Canute) carries the chair from the trunk of the car to the shore while his brother carries the beach bag.  Each day they set it up the same way; chair on the left, bag on the right and sandals behind the chair.  Then, without so much as moment’s hesitation, they walk into the surf. 

Perhaps there is no better place to be a boy in August than on the south shore of Nantucket.  For all of the “crowds” islanders complain about, the beach is deserted compared to anything on Long Island or Cape Cod.  Distant hurricanes send rollicking waves to break over sand bars and wash up on the beaches.  In spite of his words, the beach is his glory.

He enjoys the water and has picked up a great instinct for avoiding the thundering hit of a breaking wave.  However, he also likes to ride the outflow down the beach on his back so that the next wave breaks on top of him.  After the biggest waves, he staggers to his feet and giggles, then he falls back into the incoming combers.

When I am in the water, he wants to float.  He is a champion floater.  He can stay motionless atop the water for five minutes or more.  Although, he has more trouble when the surf is coming in waist high.   Nonetheless, he is calm and at peace in the worst surf and current.  Which is why I call him the Perpetual Water Rescue.  Otherwise, he and his brother play like puppies

And so it goes. 

A few minutes after his first visit, he comes up the beach hopping, slapping, and “We need to go.  I hate it here.”

And we do.

Autism creates an entangling slime world of seaweed, kept at bay by firm ritual and iron habits. Within a monastic structure, joy can leap.  Without the structure, terror spirits him away.  He eats the same foods every day, wears the same clothes, and listens to the same songs.  But truck sounds, shirt labels, wet clothes, buttons, and zippers  and a whole host of irritants vex him to madness. With all its voices and demands, the challenges of a fifth grade classroom confound him.   In his best hours, he can chat and laugh.  In his worst hours, however, his classmates are trying to shoot him, the nurse is trying to poison him, and the classroom is a torture chamber. I have stood flustered and bewildered beside a big boy as he leapt and beat his thighs in roaring anger at a milk carton.  To him, Autism doesn’t speak, it screams. And sometimes, its screams at the beach.

He won’t stay on the sand.  I can’t hand him a book, bribe, or threaten him so that his brother can continue to  body-surf in the waves. He is thoughtful enough to suffer for a few minutes, but there will be a moment when he just walks away.  Something has happened that would seem infinitesimal to you and I, but to him, that something sears his skin. It could be anything.  It could be sand in his shorts, water in his ears, fragments of eelgrass floating in the waves.  It’s just intolerable. 

Autism humbles.  You can’t bargain with it and you can’t change it.  I could no longer get him to eat a cheeseburger than I could get him to eat a mouthful of dirt.  Autism gives the orders.  His world is scheduled, structured, and accustomed.  Each day is a ceremony that begins with an offering of Cheerios and ends with a bath before bed.  With patience and with a calm resolve, you can change that schedule, but on most days, parenthood comes with a side order of humble pie.  He won’t read, he won’t play Kadima, he won’t dig up sand fleas; thundering at him with the Daddy voice will tire you out before it annoys him.  He is going to swim and then he is going to leave. 

Autism also isolates; it slams the door on everyone.  He is in a tower, watching the rest of us spin forward while he stays locked in time.  The wolf pack that sweeps away his younger brother to soccer games and sleepovers leaves him alone at his home.  Family, school friends, and grandparents have to knock and wait at that door.  He revels in his fortress, alone in his tower and lit by the computer screen.  And here he would stay. 

And yet there is rage.  The rage erupts at three in the morning when he can’t get on the internet.  When there is a tear in his pants, a stale bowl of cheerios, or a car trip that lasts five minutes too long, an angry, tear-filled screeching rage bursts forth.  He hates it here.  It’s a hellhole.

After I put him in the car and he returns to reading TinTin or his magazines, the rage disappears without so much as a shadow on him.  It remains, of course, with his brother.  And with me. 

I have the gift of time.  I know the secret of the waves; they always win.  They roll in every day, every night, every second, and you can only roll under them for so long.  People, stone, and sand all fall to time.  The tower cannot stand forever, and his father will, one day, be unable to rescue him.  

So, I walk to get him out of his hell hole in his mind.  I walk so that, some day, someone can bring him down from his tower out into the whirring world and he doesn’t need to run away,  I walk, so that someday, he could stay at the beach.

 

(Photo:  Ruth Burday)

Bob Barsanti's novel, Milestone Road, was published this summer.  His previously published book of essays about Nantucket, Sand in My Shoes, is available here.

Comments

Such a great essay and hits home for alot of families like ours. It's not an easy path.

Beautifully written, once again, Bob. Thanks.