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September 30, 2016

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.

One Comment
  1. Margaret permalink

    Continued prayers for you and your family. So glad you found a place for Alex where he is safe and seems to be adjusting well. Thanks again for sharing as you do so inspiringly. Love, Peggy

    Sent from my iPhone


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