Skip to content

Good Grief?

Are you mad, Bro?

Wait. Don’t tell me. Let me guess. You can’t find any more toilet paper.

No?

Are you ticked off that you couldn’t find any more Clorox disinfectant wipes in the value size three pack at Walmart? Or maybe it was the jumbo 12 roll package of Kirkland Create-A-Size paper towels at Costco? Or that economy size 5 lb. tray of chicken breasts, all cold and plump and juicy looking squished into that yellow styrofoam tub now gone missing?

Ah…it’s okay. Your #2 freezer in the garage is pretty much maxed out for space anyway. Maybe it’s a blessing in disguise?

Maybe it’s that enviable number of stock holdings you have in Apple, or Google, or perhaps Tesla? You sure know how to pick ’em! Or, rather, you did. You might be mad because, man, those companies took a wallop in the markets this week.

No? It’s your 401k? Your retirement savings! Ah, yeah. That doesn’t look good either. That’s a reason to punch a hole in the wall, for sure. Lotsa cashola tied up in that one.

Or maybe you’re upset that this spooky virus is no longer some ominous headline from January creeping across the news ticker at the bottom of your cable news channel that you dismissed with a shrug. You’re possibly furious that, somehow, that rascally bug got out of control and they cancelled March Madness. Or Major League Baseball spring training. Or the Masters golf tournament. Even your gym is closed, for crying out loud.

Is it your vacation to Cancun (non-refundable)? You know, that all-inclusive resort with the sun, sandy beaches, buffets and bottomless margaritas es no bueno because travel south of the border has been nixed?

What? That’s still not it? You’re still pissed off? WHY?

Oh. Now I get it.

The restaurant that you work at just closed because nobody’s supposed to go out to dinner at them anymore and you’re out of a job.

The work you found as a roughneck in the oilfields of North Dakota is over because the price of a barrel has fallen through the floor.

You just found out that your kids won’t have school for a month while they clean and disinfect the classrooms of the virus, forcing you to take another shift at the auto plant to pay for their day care. But that plant just shut down too. You now must work to repay a debt that will continue to grow, depleting your meager savings. You will never catch up.

You just heard that the assisted living facility where your elderly mother lives has just announced their first case of COVID-19 inside those walls. Your mom is now quarantined to her room. You cannot visit her.

You went to bed last night after a 12 hour shift as a respiratory therapist at the county hospital and then woke up today with 101º fever, a dry cough and the inability to catch your breath. But you’re out of sick time and rent is due in 10 days. You stay home anyway, because you’re smart. You know…you went to college and learned a little about communicable diseases. (Too bad about those student loans you’re still paying back all these years later…) You now have to go to the Emergency Room in the hopes of getting tested.

You have reason to be mad. Really mad.

I do too.

My career as an airline pilot will soon be over, again. This’ll be the third time my wings will get clipped. Yet another 100% pay cut. The whole global travel industry stands to be decimated.

My family is now sequestered from others. My wife and elderly parents each are considered a much greater risk of contracting a severe case of the virus due to their preexisting conditions and weakened immune systems.

And the world I know, perhaps worst of all, is rapidly shrinking to the size of our homes, stuck here as we are. Towns, cities, states and countries all around the globe are reporting spikes in cases of COVID-19. More deaths due to the virus are tallied each day.

And it doesn’t take much intellect to figure out that this pandemic could be cataclysmic to economies near and far, small and large. Everyone will feel this, if not physically, certainly financially. For a long time.

Anger seems fitting. None of this seems fair. It is not.

This is loss on a staggering scale. This is grief. We are all experiencing grief. My heart breaks just writing this.

Most psychologists agree that there are 5 stages of grief: denial, anger, bargaining, depression and acceptance. Most people go through them in order, but it is entirely possible to lightly brush against one or regress to another. It’s a continuum, not always distinct.

Unless you’re truly living with your head buried in the sand, you’re probably past the first stage, denial.

What I see from the words and acts of colleagues of mine, they are squarely camped out on the second stage–anger. For all the reasons I mentioned above and more. Rational or not, people are furious. They have every right to feel as they do.

But where I differ from them is this need to blame someone, something, some place, like China and all its people, wherever they reside.

Why do I feel this way? It’s pointless, that’s why. Does anyone think China will somehow send us a check in recompense for everything we’ve lost? I don’t think so. It is therefore a waste of emotion to me.

Personally, I wouldn’t do a damn thing differently. I love my chosen occupation. Best job in the world. I didn’t want to go into dentistry, though that certainly would have kept me employed through all these twists and turns in our world history.

I could have kept my earned money beneath my mattress, too. Just not a wise idea. It would have been lumpy too.

And everything living we know one day will die. This, my friends, is irrefutable. I hope it’s a natural death, of old age. But we have no control of this.

I get it. You’ve lost a lot, and possibly much more to come. Me, too.

But perhaps it is better to focus that energy and emotion on solutions to our struggles and compassion for those that have it even worse than we do. I think it is.

Grief and the stages of it are a part of any loss. Good grief, just admit this.

And don’t stay mad, Bro.

Wind The Clock

I started this blog a long time ago (it seems) with the simple hope that it would allow me an outlet to how I was feeling. I didn’t care who read it, if anyone. Back then, I decided that nonplussed was an accurate descriptor of how I felt. Surprised. Chagrined. Bemused.

But also not disconcerted, an important distinction.

At the time, I was in my 3rd year of furlough from my work as an airline pilot. It was my second furlough–the first one lasted 5 years–a grand total of 8 years exiled from my dream job.

‘Furloughed’ is a just kind word for ‘laid off.’ It still means one is unceremoniously shown the door from their place of employment through no fault of their own, with a full 100% pay cut as a parting gift. Being furloughed sucks.

Why do I bring it up? Why do I resurrect a moribund blog that I haven’t added to in almost 4 years? Because I’m feeling nonplussed again.

Unless you’ve been off the grid for the past 3 months, you know about COVID-19, also known as the coronavirus, which germinated in China and has now spread across our world like so many dandelion seeds in the springtime. The virus is pernicious and possibly deadly to a small percentage of the population. The kicker–there’s no known cure.

And it’s now pretty much everywhere. Why? Because people seem to spread it. Those unlucky infected souls merely cough or sneeze, then touch something with the same hand they just used to contain the snot, then someone else comes along, touches the same spot or inhales the microparticles and, ta-dah!, you’ve just spread the disease. Nice work.

How the virus became bad and worldwide looks simple. It boarded an airplane. An unwanted stowaway without a ticket, passport or visa. More coughing, sneezing and in some cases, dying. And as of today, on six continents.

It took a while for some countries to react. I’m not about to touch the third rail of politics to rant about what should or should not have been done sooner to stem the spread.

But I am going to feel nonplussed.

Countries both free and totalitarian, like Italy and China, have essentially locked down their citizenry as their heath care systems grapple to cope with the sick. The hope there is that when people don’t physically interact with others, the virus won’t spread so fast.

Here in the USA, we are rapidly headed in that direction. Major sporting events, concerts, trade shows, any place where large groups of people might congregate–all postponed or outright cancelled. Schools closed. Workers told to telecommute. No more touching your face. And for goodness sake, wash your hands!

For me? Another kick to the balls, professionally speaking. 9/11 and the terrorists who perpetrated it did the first one. My airline parked almost 200 aircraft and shed 2172 pilots by 2003. And in 2009, after the collapse of the banking industry, the real estate market and a nonsensical spike in the price of oil, a good 1473 of us pilots were again tossed out on our asses.

But when you work in an industry like mine, aviation, which exists to bring people together–not separate them–well…it’s hard to do that when those people are told to stay at home.

Empty airplanes don’t need pilots. Or flight attendants. Or mechanics. Or dispatchers. Or a thousand other jobs held by good people in the travel industry. Business leaders know this. Hence the layoffs. The ripple effect of this is obvious. It’s devastating and tragic.

I know, I know. This is all for a very good reason: to stem the spread of a pandemic. I don’t want anyone else to suffer or die either. I mean that. My job is trifling compared to someone’s life, mine included.

I’ve seen, heard and read dozens of stories about people reacting to this whole new epoch of life here on Planet Earth. Everything from a dismissive “Meh.” to a smug “Serves ’em right for trying to eat bats!” to a breathless “What a great time to get into the stock market!” and, finally, a desperate “This last package of toilet paper is MINE!” Even in my home town, news spread that bottled water was in short supply, notwithstanding the tasty and safe stuff that pours freely from our taps.

All of this reminded me of a phrase old pilots used, and which was defined for me while I was still a junior birdman: Wind the clock.

Way back in the old days before airplanes had electricity, many were equipped with clocks right there on the control panel next to the altimeter and oil pressure gage. Used for basic navigation, they were set each time the aircraft flew, with the pilot dutifully turning a small black knob on a regular basis, lest the clock stop, leading the airman astray.

But the term “wind the clock” was also a euphemism for “slow down and think. Stay calm. Don’t do anything rash.”

Pilots are taught to carefully analyze a situation before acting. Sometimes a knee-jerk response is completely wrong and potentially dangerous. If a pilot were to pause and “wind the clock,” he would hopefully allow more clarity to his mind and less distraction to his problem solving.

Which is what I plan on doing. And I hope more people consider before running to the grocery store and buying every last wet wipe and can of kidney beans.

Yes, I am deeply concerned at the physical, mental and economic impact that this virus is presently unleashing upon the world and, especially, my industry. I am rightly nonplussed at the thought of a third furlough.

But I also know to not be disconcerted by the threat, either. We survived the last two. We will get through this one, also. We all just need to wind the clock. Then go wash our hands.

Gifts

Alex’s birthday was today.  He turned 10 years old.  He’s into double digits now!  An auspicious anniversary, for sure.

I’d love to regale everyone with jolly tales of celebration and parties and streamers and balloons and presents.  But there wasn’t much of that.  In fact, I was the only family that physically saw him today. Plenty of reasons for this. I did try to make it as nice for him as I could, however.

Alex has been living in a group home for boys with autism for 8 months now.  Other than a few brief trips back home to celebrate the major holidays with us, his time has been spent at the group home or at school—a special place exclusively for kids with autism.  This has provided him a certain order and predictability—a routine that he can adapt to, that doesn’t add to his anxiety. Keeping him mostly at the group home was preplanned by Kat and I as a means of establishing and reinforcing his home there.  The staff agreed with our strategy.  It seems to have worked.

I haven’t written much about how he’s doing.  To be honest, I’ve been struggling—to describe the strange calm in our house in his absence, to measure the angst we feel knowing that someone else (many people actually) are feeding him, clothing him, trimming his fingernails, toileting him, tucking him into bed.

If you read my Facebook feed, you may know that Kat, Drew and I have enjoyed some far-flung adventures in the past 10 or so months, traveling to Europe twice, then to California for spring break.  All without Alex.

This is what’s hard to describe.  A feeling of juxtaposition, of being torn—between struggling to care for him under our roof while his behaviors corrode our patience and morale—and reveling in the swells of newly remodeled bathrooms, freshly painted (and repaired) walls, uninterrupted mealtimes, and even—gasp! —the time to travel away from home further than a short car trip.  All of which feels luxurious and extravagant.  And gratuitous.

While Alex spends the better part of his days at a group home.

Is this life? Is this living? For whom?

Yeah, we are living.  We are fine.  Kat loves to travel.  I do too—I even get paid for it.  Our lives have become easier.  But is this a good thing?  What would Alex say?

What would Alex think? An incredibly simple, obvious question.

Does Alex think?  What does Alex think about?  How complex are his thoughts?  Does he think only of himself?  Does he think of his family? What the hell is going on inside that mop-haired head of his?

I am fortunate to have widely varying interests and activities that vie for my attention.  But if you ever want to see me fall into a deep, sticky hole of rumination, just ask me if I have any idea what goes through my son Alex’s mind.

Yes, Alex is still nonverbal.  Yes, he still is prodded daily to use his iPad in the attempt to bridge the chasm between what he thinks and what we know.  But it’s slow going.  And not easy.  We’ve replaced Alex’s helmet, the one he wears to protect himself from, well…himself, twice in the past year.  It gets plenty of wear and tear doing its’ job.  It’s a sign that Alex gets frustrated a lot.  Still.

Which makes his birthday today a little bittersweet.  10 years seems an epoch ago, yet as vivid as this very moment.  So much has changed in that time.  And yet, with his mannerisms, Alex doesn’t seem much older than a toddler.  Besides, what kind of gifts do you give to a 10-year-old toddler?

I’m not trying to be grim about it.  Much of what Alex and autism has uncovered and demonstrated for me is fascinating and rich.  I consider him a gift that I don’t even fully appreciate yet.

I came by Alex’s school at lunchtime with cupcakes for everyone.  Those, plus a lengthy session of bubble-blowing seemed to leave Alex pretty satisfied.  Tonight, I planned on spending the evening with him at the group home.  Another round of cupcakes for the staff (and him of course) along with more bubbles.  But—I wanted to stay with him until he fell asleep.  That would be my “gift”.

The treat of watching endless YouTube Sesame Street videos after getting snuggled up by Daddy in his favorite fuzzy blanket was enough to elicit smiles and giggles.  He finally fell asleep next to me watching “Ladybug Picnic”, one of my all-time favorites. I think he liked my gift.

See what I mean?  I have guilt, frustration and lots of unanswered questions.  But I also have a wonderful, unique boy with an infectious giggle and endless kisses when I ask for them.  I think he gives me more gifts than I give him.

Placement

I can hear a pin drop.

And crickets chirping outside.  And the tick-tick-tick of the second hand on the analog clock in my bathroom.  It’s that quiet.

Kat is not here.  Neither is Drew.  They’re taking a weekend trip together.  Just me and our pooch Merrows at home right now.

Who’s truly absent is Alex.  He entered a group home for boys with autism just over a month ago.

Kat and I had been trying to find placement for Alex for 6 months now.  Concurrent with this act was a flood of feelings we shared with each other and with Drew—frustration, anxiety, worry and above all, guilt.

This whole concept of “placement” sounded odd and clinical to me.  Artwork gets ‘placed’ on a wall.  The ‘placement’ of tableware is important if one hosts a formal dinner.  Even Merrows knows the meaning of ‘place’—the command for a service dog to go where she’s to stay.

“A place for everything, and everything in its place”, says the proverb.  But does this apply to people, too?  Isn’t Alex’s place with us here, at home?  As a member of our family?

The idea of Alex residing in a group home hit me broadside.  I hadn’t even considered it.

It happened this past February when Kat and I were in Alex’s psychiatrist’s office discussing his medication regimen.  This particular doctor had only met with us once before that day.  Due to changes in Alex’s insurance, she was new to all of us.  There was a lot of ground for us to cover, a lot of Alex’s history to discuss.

Alex has been on some kind of psychotropic drug for almost 5 years now.  Each medication and dosage were carefully prescribed and assiduously meted out.  We would note any changes to his behavior.  It could be jitters, sleepiness, increased appetite, irritability, constipation, diarrhea, insomnia, nausea, even skin rashes.  Given his inability to speak or harness any other means of active communication, all we could do was observe him.

His psychiatrist, a nice lady named Dr. Lindell, ran through a long list of medications.  Although I did not bring Alex’s list of meds that I had compiled with me that day, I was familiar enough with them to answer whether or not he had been prescribed that medicine before.  The doctor jotted down notes as I answered.

Eventually she exhausted the list of different meds and combinations thereof that could be tried with Alex.  Hope faded that improving Alex’s alertness, attention span or general disposition was just a matter of ‘the correct’ couple of pills, whatever they would be.  Dr. Lindell stated that only two medicines have been clinically proven to work on kids with autism.  Alex had already been on both of them.

And still he struggled.  Banging his head, kicking others, cracking windows at school in a fit of rage, even what seemed like willful acts…a plate of food he used to fancy—slapped off the table and onto the floor.

We all struggled.  Kat, Drew, Merrows, me.

“Perhaps a group home might give you guys a break.” Said the psychiatrist offhandedly.

Her words needed to be processed twice by my brain.

“Wait a minute,” I blurted incredulously.  “What are you saying?”

Kat turned her head and looked at me.  Written across her face was sadness and resignation.  Those blue eyes were filled with it.  She sighed.

The doctor repeated what she had said, but more delicately.  By my reaction, both of them knew this suggestion wasn’t quite palatable to me—yet.

The first word I thought of was a whopper:  “institutionalization”.

We are talking about institutionalizing my son!  Bars on windows.  Commercial grade locks on doors.  Padded walls.  Staff dressed in white lab coats pushing people around in wheelchairs.  That’s one step above a prison cell!

I felt sick to my stomach.

Kat, however, had past experience with group homes.  Long before I knew her, she helped manage a group home for special needs adults.  We weren’t talking about kids with autism here, no.  But Kat could confidently speak to the efficacy of group homes in general.  The psychiatrist nodded and echoed what Kat said.  I needed to seriously consider this as potential help for Alex.

Help for all of us.

A few weeks after this meeting, we had to call 911 and take Alex to the emergency room.  A couple of weeks later, Alex cracked a window in his school classroom with his skull.  After that, Alex hit his helmet so hard against the floor that he broke the reinforced plastic face guard.

The deeper he spiraled down, the more Kat, Drew and I got sucked into the vortex with him.  Alex’s near constant discord and whining—his clamoring for attention and constant need for monitoring made me feel like some Chinese acrobat trying to keep plates spinning at the end of poles.

It was killing us.  Kat and I felt our nerves corroding.  We snipped at each other.  Our family routines revolved in a tight orbit around Alex.  Who’s watching Alex?  Who’s going to clean that spill up?  We’re out of diapers.  Have you changed Alex’s (urine-soaked) bedding yet?  Can you please talk with Drew?  He’s upset and crying in his room.  Over and over and over.

Family meals ceased to exist.  We ate in shifts.  Food was choked down in gulps when we had a free hand.  I fretted about how our lives were dissolving and rewarded myself with junk food.  Kat drank nearly a bottle of wine a night to salve her nerves—but only after Alex had finally fallen asleep.

Small breaks came while Alex was at school.  Kat worked her knowledge of the group home system in Illinois and began her research.  A list of group homes in the area was compiled.  And by ‘area’, I mean places as far away as Rochelle—an honest two-hour drive from our doorstep.  When one needs help badly enough, one casts a wide net.

Phone call after phone call were made.  Most of the facilities on Kat’s list either didn’t have any room for Alex, or simply didn’t accept boys as young as he was (9).  Some only accepted kids who had physical medical issues, like the inability to walk, for instance.  The list got narrowed down pretty quickly.

A group home in Rockford replied to our request for consideration with a date and time to “interview” Alex—and us, of course. “To see if he will ‘fit in’ with our residents,” we were told. We left Drew with his grandparents and road tripped out there.

It was a sprawling campus of sorts—one main brick building with an office, meeting room, therapy rooms and a nurse’s quarters—and at least 5 smaller residence halls.  Each building was separate from each other—if the weather was hot or cold, inclement or not, each resident had to dress accordingly.  The whole place was surrounded by a 6-foot chain link fence.

It felt sterile.  Cinder block walls, laminate tile floors, vinyl furniture, humming fluorescent lights—the kind we remembered buzzing during our school days.  Like a college dorm.  Except no cheesy wall posters touting beer or music groups.  Everything was painted an institutional shade of mint green.  No bars on windows or people in white lab coats.  But it still was stark and depressing.

The staff was nice enough.  We spoke with them for a while.  They even allowed me to make a small mess when I began blowing bubbles for Alex in their meeting room to help keep him calm.  We told the staff just how much Alex enjoyed seeing bubbles.  We all watched them pop-pop-pop slimy circles on the laminated wood furniture. They smiled toothless smiles, nodded a little, then wrote their observations down silently.

We were not invited back.

Which was just as well.  The look of the place left both Kat and I cold.  And being at least 90 minutes away from Alex would be highly inconvenient if we were needed quickly.  I figured with our luck, this was bound to happen eventually.

By now it was nearly Memorial Day.  Soon Drew would be out of school for the summer, and Alex would follow by the end of June.  After that, the doldrums would set in.  Kat and I knew we would have our hands full just trying to keep Alex safe, let alone calm.  And for two months!  This certainly would qualify as a Sisyphean task.  There would be no “break” this summer for Kat and I.

Even Drew, our 10-year-old, could see how his summer vacation was shaping up—and it wasn’t promising.  His interest in any outside activity disappeared.  Fun stuff, like swimming, riding his bike or going to play miniature golf evaporated.

In its place was worry.  “Daddy, when is Alex going to stop whining?”  “Why does he always ask for bubbles?”  “Will he ever be able to go to the bathroom by himself?”  “How come he’s so angry?”

And even sometimes pathos.

“Alex is never going to get into a group home,” he would mutter.

This freaked me out.  Drew, normally the beacon of sunshine in our lives, was becoming sour and fretful.  It coincided with Alex’s increasing self-abuse.  I struggled to understand why.

But Drew could be amazingly compassionate, too.  Seeing his mom and dad at their wit’s end, Drew’s incisiveness would cut through the turmoil and clatter.

“Daddy, how are you and mommy doing?

We were doing shitty, thanks.  But that was my inside voice.  Sometimes I’d lie to him, thinking a lie would be better.  You know…more comforting.

“Fine,” I would croak, practically choking on the word.  It felt terrible.

Car rides, gallons of bubble juice, respite help by the hour, caffeine, alcohol and lots of words of support got us to August 19th.  That’s when we were allowed to enter Alex in a much closer, nicer group home.

All indications are that Alex is adapting well.  He has his own corner bedroom with big windows that look out into a grassy back yard.  He is mixing well with his 5 fellow male residents.  He even has one of them blowing him bubbles—outside only.  Another boy, also non-verbal, appears to make Alex giggle, and when he does, this boy giggles too.

Alex is there right now.  At this late hour, I hope he’s asleep—resting well after a full week of class at his new school.  I hope the house staff has tucked him in and that it’s quiet there, too.

There is peace in silence, but also a hollow emptiness that seems to echo.  After years of clamor, only the crickets and the ticking of the clock and the guilt of being able to hear all of that again.  Without Alex sleeping in his bedroom next to ours.  This is going to take some getting used to.  We miss him so much.

The Hardest Thing

“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.

It’s hard

Drew likes sitting with me on the little wooden bench outside our home. It’s after dinner, after Alex has gone to sleep, usually.

Yesterday, while we sat together enjoying the warm summer evening, he turned to me.

“It’s hard living here. With Alex.”

The tone of his voice was soft and thoughtful, reflective. Hoping to open that door a little wider, I asked him to elaborate. Drew was quick.

“Alex is whining and hitting himself so much now…all the time.”

I also heard frustration and sadness.

“It’s just…hard.”

Along with Alex’s caterwauling and the obvious discomfort of seeing him wallop himself with his fists, or his tablet, mom’s cell phone or whatever’s hard and nearby, Drew receives little of what a typical sibling might receive in that rambunctious interplay that brothers have.

His is a brother that only shares disquiet and tension–and the occasional thrown punch or kicked shin. Little more. For his part, Alex siphons much more from mommy, daddy and everyone else, including Drew. Alex is not much of a companion. Definitely not like my brothers were to me, even when we were impetuous punks to each other.

But still Drew tells me he loves his brother. He tells me often.

And even while we were on a much-needed vacation in Italy earlier this month–and with it all the richness and beauty of this gorgeous land, Drew would sometimes confide in me, all of a sudden.

“I really miss Alex.” A completely disarming innocence in his voice. “I wish he could be here with us.”

Alex couldn’t, of course. He is far too volatile, far too impatient and far too disregulated to be locked inside an aluminum tube with 200 other passengers for over 10 hours.

Even so, Drew feels like Kat and I feel. All our joyous trips to the beach, or out for gelato or just soaking in the sights…none of it was quite as complete without Alex. Ours wasn’t a true family without him.

This is one of our goals, but we’re not there yet. Today, Kat and I took Alex to tour a small group home.

On the surface, it’s the opposite of including Alex in our world.

It’s a place where autistic boys, aged 10 to 18, might live under special circumstances. And with special supervision. We were invited to leave Alex under the simple premise to see how he would react.

Frankly, this rationale had less to do with Alex and more to do with the other residents of the home. If Alex was going to take too much of the caregiver’s efforts and attention, he might not be invited back. Today was a test for him.
I don’t think you can study for this type of test. You just go and do and let the chips fall where they may.

We did.

Initially, Alex was upset. This necessitated us fastening his helmet to his head. Which got him even more riled. Luckily, Kat remembered that she had packed some bubble juice and a wand. “How about some bubbles, Alex?” She asked.

Like a Hindu snake charmer and his pungi, Kat was able to distract Alex from any other disruptive behavior long enough for us to sneak out the door for the two hours they requested to evaluate him.

I am cautiously pleased to say that Alex seemed to have a ‘typical’ time at the group home. We will hear more later on this week, presumably with more information on what support this group home can give Alex. And us, of course.
Because…for Alex–he needs constant supervision. He needs careful assistance with everything from toileting to tucking himself into bed and so much more in between.

And we as his parents are tired. And weary. It’s hard, just like Drew said. We feel guilty too.

But like Drew said, we still love him. We always will.

Siblings and the Folly of Comparison

Perhaps you can relate.

If you grew up with a sibling or siblings, or, once reaching adulthood you found yourself in a house full of siblings, you know that kids can share surnames, facial structure, hairlines, I dunno…anything that can be connected via chromosome handoff to one another. But that might be as far as it goes.

Maybe ‘sharing’ isn’t exactly the most fitting word. Lord knows having to share an open bag of Doritos or the video game console or even the back seat of a car with my brothers was like asking two warring Middle East countries to put down their weapons and hug things out. It just doesn’t happen sometimes, even with great parents (like we were blessed with) trying to show us by walking the walk.

Drew and Alex shared many common traits when they were younger. Born after almost identical gestation periods, delivery length identical, weight on the baby scale only two ounces apart. They even reached many of the milestones infants and toddlers reach almost exactly the same. It wasn’t really until after Alex reached the age of two that their ‘sharing’ of traits diverged.

Alex was diagnosed with autism officially 10 months later. I had my doubts many months before then. And I rationalized away some of his autistic traits because he and Drew had, until then, been so very similar. I didn’t listen to my gut.

Alex was always a fussy baby. He would always need to be held or rocked before he’d fall asleep. He never took a bottle of formula much to the chagrin of my permanently sleep-deprived wife. She nursed him for 21 months–long after he had teeth. I wince just thinking about that kind of discomfort.

So I’ve long ago abandoned the quaint notion that my two sons would follow down a path similar to each other as they grew.

When I’m on Facebook I see many of my peers posting photos of their offspring siblings playing sports together, or fishing, perhaps dying Easter eggs or decorating cookies. These are bucolic, wholesome and happy moments which should be proudly captured on camera and disseminated to everyone.

But the reality of my world, my family’s world, is different. After last month’s episode with an emergency call placed to 9-1-1, subsequent ambulance ride and many, many little flare-ups of behavior–some disconcerting, some downright shocking–have left Kat and I with the difficult reality that we are no longer able to meet Alex’s needs as we struggle to meet Drew’s and, finally, our own needs, both as a couple and as individuals.

We have been looking into placing Alex in a group home.

My heart is so heavy that my hands don’t seem to move quick enough to type the words that you’re reading. I apologize for the rambling.

As I alluded to at the end of my last blog post, our visit to the hospital emergency room concluded with a determination that there are few “correct” places in the fabric of our society here in our community to accept children that don’t walk the same path as most “neurotypical” kids.

And all the respite we can get, all the Sheetrock I can buy to repair the holes punched in our walls, all the gallons of spilled milk we’ve sopped up, all of the thousands of diapers we’ve changed, all the tears we have wiped off of all of our cheeks–none of it seems to be the last time. We are running an endless, uphill marathon. We are losing our breath at the same time our legs are giving out.

The proper placement for Alex is out there–somewhere. But as I mentioned, it’s not available right now, nor will it be around the corner from our home. We don’t know when we will have to drop off our little guy with his protective helmet, a few fuzzy blankets and a photo book of his family that loves him more than he might ever know and hear the door lock behind us. But it’s gonna suck when that day comes.

I keep on remembering that comparing our life to others is extremely detrimental to our happiness. I even wrote a ham-fisted haiku about it.

But to hope for happier days at La Casa Bertellotti is only possible if our situation changes.

>
Ponder this harsh ploy
Most conniving thief to joy
Is comparison