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The Hardest Thing

August 13, 2016

“Are you taking Alex for a car ride, daddy?” Drew asks.  His voice is barely above a whisper.

Drew woke up when he heard Alex banging his head on the pantry door.  Alex was agitated—possibly hungry, though he had already had a snack.  And although I was in the kitchen with him, I wasn’t immediately next to him when he decided he had waited long enough for me to respond to his needs.

“Yes,” I reply to Drew.  We are both looking at Alex.  He’s standing next to the pantry pumping his fists against his hips in anger.

“I’ve got him.  Now go back to sleep.”

“I’m sorry daddy.” Drew says mournfully.

“It’s okay, buddy.  I’ve got him.”  I try to put a slight lilt in my voice, thinking it might ease the anguish that has rubbed off on him.  I shuffle Drew down the hall towards his bedroom as gently as I can.

It is just before 6 this morning.  Kat is asleep again.  She awoke at 4 o’clock to the first sounds of Alex stirring in his room.  I relieved her at 5:30. We’ve been working under this arrangement for months now.  Energizer bunny or whatever you want to call me, I usually am the one who doesn’t need caffeine to keep up with Alex in the morning.

Taking Alex for a car ride has a dual purpose.  Alex appears to be calmed by the motion of the car.  And I am able to restore peace and quiet to our household for a little while longer.  Alex’s banging and squawking hardly makes for tranquility.  It being a Saturday morning, who wouldn’t want to sleep in?  Besides Alex, that is.

Drew knows this.  That’s why he asked me if I was going to fulfill Alex’s wish.

Of course I am.

I grab my wallet and a bottle of water from the fridge.  I put my Cubs cap on and, it being summer, flip-flops on my feet.  I’m a sight alright in my khaki shorts and last night’s undershirt.  Harried Daddy on the Go!

Alex awaits me, standing next to the door to the garage.  He’s holding my car keys.

He needs shoes and socks first.  I tell him this.  He responds with a protesting slap of his hand against his head but knows I mean business. After I point to the chair next to the door, he flops down on the seat and allows me to slip them in place.

Socks on and shoes tied without drama, Alex stands up.  I reach up and flip open the deadbolt we’ve installed at the top of the door to the garage.  Had the door not been deadbolted, Alex would have long ago slipped slipped out of the house.  He has demonstrated this skill many, many times.  He even knows which button to press for the electric garage door opener.  He cannot reach the deadbolt, however.

We step outside.  The early morning air is calm, warm and thick with humidity from last night’s rain.  The sky is opaque grey.  The light is silvery and soft.  With Alex awake or just by myself, this is my favorite time of the day.  It does get old after a while when one has to experience it on just 5 or 6 hours of sleep—day after day.

I tuck Alex in to the back seat, directly behind me.  After clicking his seatbelt, I pad one of his soft, fleecy blankets over his bare legs.  He likes this.  He shifts and wiggles a little, the faintest curve of a smile at the corner of his lips.

A few buttons pushed and levers flicked and we are soon motorists.  I point the car south, then east toward the center of town. The streets are empty—one distinct advantage of these early morning sojourns.  I make most of the green lights, too.

Alex is silent in the back seat.  I look in the rear view mirror occasionally to make sure he hasn’t fallen asleep, which is rare.  Instead, he’s just looking out the window with that infinite, soft stare of his.  He seems content.  Every so often I might hear a chuckle.  This is good.

Through Des Plaines we drive, crossing the train tracks that bisect the center of town.  I turn southeast to parallel them for as long as I can.  I’ve learned the secret that if a commuter train is passing by my side and if I keep up with it, I will make all the green lights at all of the intersections.  Plus, I like trains.  Maybe Alex, too.  I always point them out to him.

Some days I relish the peaceful absence of sound.  Other days, I’ll softly turn on the car stereo and listen to XM satellite radio or NPR.  This morning I’ve chosen my iPhone and its’ 6000+ songs shuffled up.  Frank Sinatra’s crooning segues into Muddy Waters’ Delta blues which then collides with Motorhead covering The Yardbirds.  The juxtaposition of all my goofy musical tastes makes me smile and keeps me from falling asleep.  I wonder what Alex thinks.

I wonder about lots of things.  Mostly Alex, Drew and Kat.  I’ve got time to think.  Lately, it’s how Alex’s behaviors have deteriorated terribly and how it has come to affect the rest of us.

Once upon a time we could leave Alex to quietly thumb through a book, or enjoy a nice spin around the neighborhood in the bike trailer.  He used to love romping through the water hose or kiddie pool in our back yard.  No longer.

Now, only a few activities seem to placate him.  If kids with autism can be obsessed with something, Alex is obsessed with the sight and act of us blowing bubbles—soap bubbles.  More and more.  Again and again. Their formation, gossamer buoyancy and eventual popping are absolutely hypnotic to him.  We’ve purchased bubble juice by the gallon.  Our hardwood floors have become slick with popped bubbles.

Eventually, when we are simply out of breath, we will shift to Alex Approved Activity #2:  YouTube Sesame Street videos on our iPhones.  This activity can be fraught with peril too.  Suddenly bored with what he was watching one day, Alex decided to drop Kat’s iPhone in a mop bucket full of dirty water.  IPhones are great, but even wrapped in a sturdy protective case, they cannot swim.  It cost us $150 to replace hers.

Our last resort, and one that appeared to get Alex out of bed this morning—food.  By the looks of Alex, with his distended belly, he is one well-nourished (over-nourished) boy.  Some of this can be traced to the side effect of one of his calming medications, sure, but some of it can also be blamed on Kat and I and the immature, naive idea that food, especially snacks, can be used to satiate him.  I mean, who wouldn’t want two strawberry frosted Pop Tarts at 5 in the morning?  Maybe a handful of barbeque flavor potato chips?  Sure.  Why not.  We win absolutely no Parent Of The Year awards for Alex’s board of fare, I am ashamed to admit.

Absent those three activities (or a car ride) it’s just near constant nails-on-a-chalkboard whining along with slapping, punching, scratching or kicking.  All of us.  Even beloved Merrows the dog.  This, coupled with poop catastrophes, diaper changes, spills, dented walls and miscellaneous bruises have made these past few months brutal.

Two weeks ago, we received final word that Alex had been granted entrance into a group home for boys with autism.  This, along with a school devoted to only children with autism, would help him where we obviously couldn’t any longer.

All of this was very good, hopeful news.  It meant Alex would be getting better care.  And we would get a break from Alex, as harsh as that sounds.

As late as three days ago, word passed to us was that Alex would be allowed to move into this group home on Friday.  Kat and I got ourselves busy with packing Alex’s things.  We exhaled a little.

Well, Friday was yesterday.

While I was out running errands on Thursday afternoon, Kat was told that the agency approving Alex’s residency in the group home was unable to complete his paperwork in time.  Friday’s move-in date would not be possible.  Kat tried to see if any exception to this paperwork requirement would be allowed.  She was told no.

Kat hung up the phone and began to sob.  Drew asked her why she was crying, so she told him.  Ever the compassionate one, much more mature than his age, Drew went to her side and wrapped his arms around her.

“It’ll be okay, mommy.”

Drew called me on my phone a few minutes later and told me what had happened.  I could hear his heartbreak too.  The news felt like the finish line of a marathon was moved an extra mile.  We were already nearly out of breath, our strength gone.

I arrived home and consoled Kat.  She shook with grief as I wrapped my arms around her.  I repeated what Drew said, more or less.

“We’ll get through this.”

I don’t know how convincing I was.  Mostly I just held her.

After Alex went to sleep that night, I called Drew out to sit with me on our wooden bench in the front yard.  Still sultry from the heat of the day, my voice competed with the noise of the cicadas all around us.

“You know what, Drew?” I turned and looked him in the eyes.

“I have done some challenging things in my life.  I have taken some tough tests.  I have passed difficult check flights on a dozen different aircraft.  I’ve flown through mean thunderstorms.  I’ve taken off in thick fog.  I’ve landed in blizzards…”

Drew listened intently.

“I’ve carried your mom to the hospital when she was too sick to walk.  I’ve held your mom’s hand while she gave birth to you.  And to Alex.  She was so worried.”

“All of those things were hard.”  I paused.

“But none of those things were as hard as what you, mommy and I have been through these past couple of weeks.  None of them.”

Drew’s eyes got bigger.

“This is by far the hardest thing your mommy and I have ever done in our lives.”

I continued.

“And do you know what that means?  It means lots and lots of stuff that you will go through in your life will be a piece of cake—simple, a breeze—in comparison.  That is very good news…

Because to any challenge you might face in your life, hard stuff, like what I mentioned and more,” my voice started cracking “…you can say ‘I’ve already done the hard stuff!’  And you have.”

Drew thought about this for a second, then said “Are you crying daddy?”

I smiled, swallowed hard and chuckled a little bit, then told him the truth.  “Not yet.”

 

All of this is on my mind this morning.

Through Park Ridge we drive, then into the corner of the Chicago city limits, still pointing southeast.  The sights along this route is comfortingly familiar for Alex and I.  That old-school Italian bakery in Edison Park.  Those two guys selling the morning’s newspapers out of a tin shack down the street on the corner, rain or shine.  That stately old church, those lush green parks full of big oak trees, the occasional jogger, dog walker or cyclist.

This morning, Alex is mostly calm.  I hear some rustling.  A soft, warm arm suddenly wraps itself around my neck from behind.  With just enough play in the inertial reel of his seat belt, it seems Alex has become a bit of a Houdini.  Alex is now standing behind me, trying to give me a hug.

“Hey there buddy!” I call out.

Any affection bestowed by Alex is uncommon—therefore precious and greatly appreciated.

“That’s very nice, but you’ve got to sit down!”

As pleased as I am, I can’t let him roam about the back seat unrestrained.  I pull over and grab his hips to push him back into his seat.  He fusses some more, but acquiesces.  I reattach his seat belt across his chest and lap.

By now we’ve reached the apex of our morning route.  A hard right turn has us pointed northwest back towards our home.  I feather the car’s throttle as gently as my foot can manage and I don’t speed.  Not here, not now, anyway.  We are not in any type of a hurry.  Besides, the quick acceleration and hard braking so common on the roads later in the day tend to get Alex upset.

We pull back into our driveway.  All told we’ve been on the road for about 45 minutes.  I shut off the car and open Alex’s door.  Through the living room window, Merrows greets us with a wagging tail and a smiling face.

Alex starts slapping his head again.  Sometimes it’s like that—a nice calm drive that he doesn’t want to end.  But end it must, and he’s upset.  I shepherd him inside.

This is how it has been all summer long.  Wash, rinse, repeat.  But our hopes and struggles were amplified this week.  And I believe what I told Drew, it’s the hardest thing we’ve had to do in our life.

And we’re not quite done with the heartache.  Adjusting Alex to the group home will be fraught with challenges.  Our home won’t quite be the same while he’s gone.  But maybe we’ll all feel better when I pick him up for a ride in our car.

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From → Alex, Autism, Family Stuff

3 Comments
  1. Margaret permalink

    Your very brave family continues in my thoughts and prayers….you are an amazing writer….and an even more amazing father. I look forward to seeing the Hollywood version of your best selling book…the one with the happy ending…starring___?????______as the handsome David Bertellotti. Thank you for sharing this painful chapter of your life story. Hope it is helpful to be journaling as you journey through this very difficult path…..I look forward to each chapter. Peggy Sent from my iPad

    >

  2. Love and hugs for your whole family!

  3. Terese Melone permalink

    David – my heart was aching as I read this but you are doing what is best for Alex. I can remember holding him as he watched Veronica’s softball games. I will keep checking to hear his story. Thinking of you, Kat and Drew.

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