Tag Archives: Autism

Flow

19 Feb

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“We Americans are trained to think big, talk big, act big, love big, admire bigness but then the essential mystery is in the small” — Jim Harrison

We were away, and it was much needed.  Doubt had crept in.  Our little world had taken a turn and much of the unspoken support we relied upon had become suspect.  Along with the broken snow shovel and old clothes, friendships had become frayed, and as if we were traveling familiar terrain in an unexpected snowstorm, we had come up short, lost in a sea of white, unsure of the direction home.

Walking along the Delaware, we swap Heath’s camera back and forth.  The hills are quiet, and the river speaks a language I don’t know, hiccuping, groaning, and burbling its way through a world slowly becoming solid.

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We see things differently.  Heath fascinated by the small and near, while I look for sweep and curve, trying to take it all in.  But his eye is good, finding the beauty at his feet while I continue to scan the horizon.

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Comfortable with the stillness of the day, he’s a pleasure to walk with.  The incessant banter of our life at home has settled down, and we listen to the water and the wind as he walks on, stopping occasionally to look around, as if searching for signs.

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Watching him, I search for signs myself.  What does he see?  In a brain whose synapses gather and splay like a flock of birds, what does a snowy day in the Catskills look like?  How does it feel?

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People are hard, and those that appreciate us are rare.  That’s true for anybody.  The natural world, though, that’s something different.  Perhaps it’s where we can best appreciate ourselves.

I hand him back the camera and he snaps the shutter, catching me unaware.  Taking a moment to check the image, he nods, and walks on.  I catch up, and walking beside him, we follow the river home.

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Proud

11 Dec

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It was already dark when Amy and Heath got home.  I had told Hallie we were going for a walk and she already had her shoes on, having struggled into her pink velvet boots, which weren’t the shoes I would have picked, but in Hallie’s world they worked.

When Heath got home, he was excited.  We had told him about the shopkeeper down the street who had been beaten a few days ago by a man shouting “I kill Muslims.”  The Giving Tree, our local yoga studio, had organized a meditation for peace, and we thought we should stop by.

On our way, Amy and I went over the meaning of meditation, leaning heavily on the fact that it would be quiet, and we should do our best to keep it that way.  Heath continued walking, happily bopping along, seemingly oblivious to all I had just said.

“Heath.  Heath.”

“What?”

“Did you hear what I just said?”

“Yeah.”

“What did I say.”

“We have to be quiet.  I got it, I got it.”

The crowd was small, forming a circle on the corner in front of the store.  Seven or eight people sat on the sidewalk meditating.  A few dozen others stood around quietly, some holding candles. Hallie was up on my shoulders and I rocked slowly from side to side as she took it all in.  Occasionally she would say, “Wow.”  One of the women on the ground smiled.

For about two minutes it was really nice.  Then Hallie wanted down.  So I ran her around a bit off to the side, where we wouldn’t disturb anyone, and we quietly took the kids inside for a treat.  Cookies, chips and crackers were gathered, and as we were digging around for our money, Heath stepped to the counter and said, “I’m sorry for what happened to you guys.  I hope you’re OK.”

The shopkeeper looked at Heath for a moment, then touched his heart, assured him they were OK, put his palms together and bowed.

Heath then said he couldn’t believe anyone would do something so horrible and started into a rant about the generally shoddy condition of humanity, which confused the man, and Amy had to step in.  But for a moment there, he had really nailed it.

Walking home, I told him I was proud.

“Why?”

“Because you spoke eloquently, and you spoke from the heart.”

He thought about that for a moment, and then said “Oh.  OK,”  before moving on, heading towards home, seemingly oblivious to all I had just said.

 

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Love Fatima Food Mart

Astoria Gathers to Support Fatima Owner After Anti-Muslim Attack

The Giving Tree

Sycamore

22 Apr

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“Why is the cross the symbol of Christianity?” 

“Well, it’s supposed to signify the sacrifice Christ made for all mankind.” 

I know, but it doesn’t really seem like much of a sacrifice.  He was only gone for like a week.”          

—  Conversation with Heath, shortly before our trip to Oklahoma

I notice the tree as we pull into the driveway, its hacked limbs struggling over the roof and into the sky.  John and Sue bought this house shortly before I married their daughter, and the tree over their back deck shaded our wedding festivities, a party for which her father and I drove to three different places, including a gas station with a smoker out back, to get just the right assortment of barbecue.

They’ve been waiting over an hour for the ambulance.  Battling pain and plummeting blood pressure, John is struggling with both his illness and its treatment.  I call the ambulance again and go back to see him.

“Hey John, how you doing?”

“Oh, I’m doing OK.”

We talk for a moment, and he does seem, not great, but OK.  Heath has been worried, so I ask, “John, do you feel well enough to see Heath for a moment, he’s been asking about you.”

“What? Sure, sure, I’ll talk to Heath.”

When we return, things have changed.  Now in pain, Amy is helping him back onto his pillows.  Not recognizing the situation, Heath begins.

“Hi Pawpaw.  I’m sorry you don’t feel well and that the chemo is making you sick.  Dad says you’re even having hallucinations.”  Amy shushes him with a look, and I lead him back out of the room.  Through the front door I see the ambulance pull up.

In the days that follow, while the rest of Amy’s family camp out at the hospital, Heath, Hallie and I take care of her parents’ house.  I open windows, tie back curtains and lift shades.  Heath plays video games while Hallie and I watch T.V., walk down to the mailbox, or play catch out on the driveway.  Amy calls, we visit the hospital, and then return to await more calls.  Two days in, late at night, I get the one I don’t want.

I don’t want to tell Heath his grandfather is dying, but I have promised never to lie to him.  So when, in the darkness following Amy’s call, he asks again if his Pawpaw is going to die, I wait, remembering Amy’s firm denial of the possibility only hours earlier, and then, looking into his open face, say “Yes, it looks that way.”

“What?”

“It doesn’t look like he’s going to make it buddy.”

After a moment he breathes, and with his breath comes a high, animal sound like nothing I’ve ever heard.  My ten-year old son is keening.

“No!” His face is a grimace of teeth and tears, his voice a howl.  “Nooooo! Are you sure?  Is there no chance?”

“I don’t think so Heath.”

“No chance at all?”

“I don’t think so.”

And then he starts to pray.  I have never seen Heath pray, but he is praying now, laying on his back, his knees pulled in toward his chest, his clenched hands held above him.

“Please God.  Please!  Don’t let my Pawpaw die. Dad, do you believe God answer’s prayers?”

I hesitate.

“I believe he hears them.  I don’t think he always answers them the way we want.”

“But there’s a chance.   At least there’s a chance.”

“A very small one.”

“Well what are the rules?  Are there a limited number of times you can pray?”

“No, no.  You can pray as many times as you want.”

Though still crying, he is quieter now.  If he prays more, I do not hear it.  We must have slept, for when I look out the window the sky has begun to lighten.

“Dad, do you think God will answer my prayer?”

“I don’t know buddy.  But I do know it was a really good prayer.”

Silence.

“If Pawpaw dies I don’t know how I’ll ever be happy.”

The evening skies of Oklahoma go a fair way toward making up for everything else.  As the day cools, the air slides from a clear robin egg blue down into warmer pinks and oranges while the wispy clouds shade into gentle swipes of purple and gray, a vibrant display that, for a time, makes everything below seem irrelevant. Occasionally on such evenings John and I would talk, sometimes on his front porch, other times out back beneath the shade of the sycamore.  He’d always want to know about Heath and Hallie, his kiddos.  But though the skies are lovely over the following days, we don’t have a chance to talk again.  John does not make it home.  It’s just the kiddos and I.

The Monday after the memorial service a hard rain sweeps across the neighborhood, great gusts of wind snap limbs, damage the back fence, and struggle to carry away the stubborn old patio umbrella no one wants to run out and close.  After years of drought, the storm is too late to save the sycamore, and serves only to remind us of the danger it poses.  Sue tells me that over the past summer the tree “just burnt right up.” She couldn’t water it enough.  But she hates to see it go, for one limb is still alive, covered with buds and young leaves, offering the hope of a bit more shade in the days to come.

Sad for a few days, Heath finds happiness again in the family he loves.  He’s a different kid though –  more open, more present, and more thoughtful.  He won’t talk about John, though.  It makes him too sad.

Amy and I don’t talk much either.  Every time we try, I feel my own distance.  She did ask if I believe in heaven and, shamefully, I dodged the question.

But should it come up again, I’ll tell her that I don’t feel like her father is gone.  He’s here with me, much as he always was.  The conversations we had, the times we shared, and the solid feeling in my chest that I have for that man are strong.  Whatever he taught me is there.  The confidence he gave me as a husband and father is there.  He is with me, he is real, and he is not going away.

Heath and John Easter 2013

Walking the Dog

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Tumbling through Brooklyn

30 Jan

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People say time flies when you’re having fun, but that’s bullshit.  Time just flies.                                                                     — Heath Bell

The plan had been to walk Brooklyn, Coney Island to Greenpoint.  An early start with a stop for breakfast in Red Hook, and then a beer in Greenpoint, at that little place on the corner.  In this way I would mark the day.  So come the morning, despite a sore head, a late start, and little desire for a beer at any point during the day, I head out the door.  Coffee in hand, I take my seat on the train, and as the wheels begin to turn the world blurs past.

 I don’t know how to reach him. 

The train takes forever.  The initial pleasure in skipping work fades as the commuters disappear,  leaving only the Brooklyn bound: tired mothers, complacent children, and one very large, angry leprechaun, whose headphones are not taking him to a calmer place.

Even though I see myself in him all the time.

Coney Island is a sad place on a winter’s day.  Bereft of people, the remaining attractions hug the boardwalk like so many dinosaurs, asleep at water’s edge.  Dreamland, Luna, and Steeplechase are long gone, replaced by housing projects, empty lots, and sky.  The few old buildings left along Surf Avenue continue to fade, making room for  an Applebee’s and other improvements reminiscent of a highway rest stop.  A runner passes me on the boardwalk, shirtless in the cold Atlantic wind.  Older guy.  Tough or just crazy?  I vote both, and head inland.

The difficulties in maintaining a friendship, and the inevitable sense of betrayal.  A process of years in my life; minutes in Heath’s.

Once known as the Road of Dreams, Stillwell Avenue is now a bleak strip of auto repair shops and the occasional decrepit house whose demeanor hints at more prosperous times.  A waterside inn perhaps, built along Coney Island Creek when it flowed all the way from Gravesend Bay to Sheepshead, creating an actual island.  Now gray and salt-stained from the spray of traffic, it looks barely inhabited.  I pass by, looking for hints of life, and then continue on, crossing a bridge over the creek’s stilled waters.

How many times has Amy said “Please don’t go away from me”?

Over the next several hours I chip away at the grid, zigzagging through the streets and avenues, progressing at a glacial pace on my journey of discovery.  What do I discover?  Brooklyn’s big.  And Bensonhurst goes on forever.  You heard it here first.

It’s what we do.

Toward the end, hours late for breakfast, legs leaden and feet blistered, having slogged past the auto shops and porn parlors beneath the roar of the BQE, I know I should quit; find a train and head home.  But I don’t.

Not caring.

And then, finally, turning left at the first opportunity, the startling quiet of Red Hook.

Buoyed by familiar landmarks, I head in the right direction, but, strangely, the community fails to materialize.  I see the projects, the parks, the silos, and even the damn Ikea, but the battered little houses where Brooklyn’s more adventurous denizens raise chickens and children in what feels for all the world like some dusty little prairie town are nowhere to be found.  Until suddenly they are, disrupting my sense of geography by appearing at a completely unexpected angle. Having arrived at my destination, I have no idea where I am.  

* * *

He appears as I take off my coat, standing awkwardly to one side, shifting slowly from foot to foot, lost in his own living room.  

“Hey, Heath.”  I toss the words gently, as if they don’t matter, and I wait, not sure if he’s heard me.

And I’m standing at a screen door as my dad tries to coax me into a game of catch.  Embarrassed, because I’m not good at catch, but torn because I know I’m disappointing him,  I cannot bring myself to step through that door.

After a moment, Heath looks up, walks over, and puts his arms around me, awkwardly, as if he’s afraid to complete the hug.

“Happy Birthday, Dad.”

I pull him close.

“Thanks, Heath.”

Looking over his shoulder, I see Amy shake her head.  This was not prompted.

I continue to hold him as long as I can

We feel more than we can show.

And then, without a word, he’s gone.

 

Heath and I Buddy Walk 2012

Photo of Coney Island from http://www.city-data.com 

Listening to the Rain

20 May

We sat on the back steps and watched the lightning play across the sky.  Tim was with us for a time, but then he went inside, leaving Heath and I alone, counting the seconds between lightning and thunder.

Heath has always  feared storms, demanding that blinds be closed at the lightning’s first flash, and burying himself beneath pillows when the thunder begins to roll.  But tonight I had a hunch.

“Heath, do you want to come watch the storm with us? ”

“No!” came the reply, muffled beneath the sofa cushions.

I let it go, stepping out into the darkness, only to return a few minutes later.

“Are you sure you don’t want to come outside?  It’s perfectly safe.  The storm is still miles away and we’ll come inside if it gets too close.”

“Really?” he asked doubtfully, peeking from beneath his shelter.

“Oh, yeah” his Uncle Tim replied. “I’m gonna come inside before I get rained on.”

And suddenly, surprisingly, he was at my side, a boy-sized bundle of curiousity and trust.  He stayed close as we walked out onto the back deck.

As a child, I would snuggle down as storms blew in off Lake Michigan and the freshwater wind whipped the sheer cotton curtains over my little double bed.  The thunder would crack, impossibly loud, and my heart would jump as I clenched my eyes shut; relaxing again only as I listened to the waves roaring in the distance, imagining them creeping across the sand, and up to our very door. 

A tornado once dropped a car into my grandparents’ front yard, it’s panicked driver bolting through their living room and into their basement, passing on the way my grandfather, calmly watching his beloved Detroit Tigers.  

And I remember the Fourth of July when lightning mingled with the fireworks.  Later that night the sirens sounded and we made our way to the basement with our pillows, blankets and portable radio, waiting sleepily until the storms had passed.  Mom was up early the next morning to visit dad in the hospital.  He was coming home in a few days.

We watched the dark clouds move in from the southwest.  I had told Heath that that if he counted the time between the lightning and thunder, he’d know how far off the storm was.  He loved this, and clung to the knowledge fervently, insisting that I begin to count out loud whenever the lightning crackled, and then nodding sagely when he heard the thunder.

“The center of the storm is four miles away.” he’d say.

“That’s right,” I said. And then we’d wait to start again.

My mom didn’t find my dad that morning.  She walked into an empty room.  He had died during the night.  While we were huddled in the basement, listening to the radio, and waiting for the world to calm, he had pulled aside his covers, gently stood up, and made his way to the window.  

“The center of the storm is nine miles away!

“Your right. It’s moving away from us now.”

“Really?”

“Yeah, the numbers are getting bigger, that means the storm is getting further away.”

I see him so clearly sometimes.

“Is there going to be any more thunder?”

“Just rumbles.  Nothing to worry about.”

Standing by that window, seeing his reflection in the darkness, and then looking beyond it. 

“You were so brave, Heath.”

“Yeah.”

Watching the storm, missing his family, and listening to the rain.

 

 

Appreciating Heath

4 Feb

Heath is leaving his school today.  His teacher has made cupcakes, his classmates have written letters and drawn him pictures.  The adults are crying, the kids are tanked on sugar, and my wife says it’s about the sweetest thing she’s ever seen.

I would never have predicted this.  Heath’s time at P.S. 122 has been bumpy, to say the least.  Last year was rough, and this year was worse.  He hated school, refused to go, and threw tantrums when he finally did.  He disrupted class several times a day, running from the room, screaming in the hallways, and at various times kicked or hit every teacher or principal who tried to calm him down.  He was not a happy kid.

On particularly rough days we would sometimes walk around the corner to his old pre-school and visit Miss Fischetto, whom he adored.  Once, while he was inside getting a drink of water, I told her what was going on.  She reminded me that it had taken Heath a few days to settle in with her as well.

“You know,” she said, “you have to…” .  And then she stopped, looking for the right word.  “You have to learn to appreciate Heath.” 

She was absolutely right, and I was moved by her insight, but how do you make that happen?

At a loss, we had Heath evaluated.  He was diagnosed with Asperger’s Syndrome.  And with that diagnosis, a small series of miracles began to occur.

The long suffering staff at Heath’s school seemed to redouble the patience and kindness they had shown our son, working with us on strategies to help him through his day.  

The school psychologist, Mrs. Reyes,  immediately made us aware of NEST, a new program administered by NYU and the New York City schools that was having great success with kids like Heath.  She let us know that it was a long shot, but they had an opening, and she wanted to submit Heath.  We agreed, embarking on what I expected to be several trying weeks of observations, interviews, meetings, and paperwork.  In reality, they were a balm, as person after person brought knowledge, kindness and laughter to the care of our son.

In the end, he was accepted. 

His two new teachers came to our house this week to meet him.  His new classmates have written him letters telling him how much they’re looking forward to seeing him.  It’s the way the world should be.

When things were at their worst, Heath’s principal told me that she was trying not to suspend him, but at some point her hands would be tied.  When I said, “Maybe that’s what he needs”, she said, “No… we don’t want to do that.  He’s just a little boy.”

So today Heath says good-bye to a school, and to an amazing group of people, who, under very trying circumstances,  never forgot that he is just a little boy.  And who never stopped appreciating him.

And for that we will always appreciate them.