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.
“Are you taking Alex for a car ride, daddy?” Drew asked. His voice is barely above a whisper.
Drew woke up when he heard Alex banging his head on the pantry door. Alex was restive—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. I shoo him 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. Frazzled Daddy on the Go, that’s me.
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 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. Dawn’s 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 but can happen. Instead, he’s just looking out the window with that distant, 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 Mötorhead 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 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.”
The words just came to me, and I was astonished to hear them, and realize what I was saying. 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 laughed 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!”
Any affection bestowed by Alex is 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 never 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 time 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.
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.
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.
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.
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
I had another “first” in my life recently. It happened eight weeks ago. My copilot and I had to declare an emergency.
Every pilot friend I have knows what the term “emergency” means. It means things are bad. Real bad.
Airplanes demonstrate their unique and valuable wherewithal only after achieving altitudes and airspeeds which would otherwise be fatal, as Icarus, from Greek mythology, regrettably discovered.
So when something happens during the course of a flight that would seem to threaten this delicate balance between those unseen Newtonian forces that allow flight in the first place, us pilots are taught how to react.
Hopefully, it’s with clear minds and coordinated efforts, honed over time with diligence, focus and alacrity. That’s what good folks pay us for.
If the poop truly strikes the fan and we need help right now, it is possible to summon assistance from others forthwith. One of us will key our radio mic and utter the phrase “Mayday Mayday Mayday” in as clear a voice as we can muster. All other chatter ceases, even in the busiest of airspace. Someone needs help. Someone is in distress. Right now.
And that was us.
It was 8:15 on a Thursday night, light winds, cool. But I wasn’t in a Boeing 777 at 37,000 over the Pacific Ocean on my way to Hawaii. I wasn’t in any other airplane. I wasn’t even flying. I was at home with my wife and family.
Alex has had a tough past several months. The confluence of medicine changes, assistive technology troubles and therapy disruptions caused by unavoidable changes in his daily routine had our little guy careening off the paved surface. Just like when your car veers off the road, things can go south very quickly.
Alex had been having another one of his ‘off’ days. He had just fallen asleep. Kat was in the bathroom taking a shower. I was downstairs in our basement playing with Drew.
Suddenly, a small toy perched too close to the edge of a kitchen shelf toppled off. It landed with a shattering crash on the hardwood floor.
Normally a pretty heavy sleeper, Alex woke up instantly to the commotion. He screamed.
Kat and I both reacted immediately to the sounds. Even though I lept up the stairs two at a time, she got there before me. When Alex has had a rough day, any extra stress—added chore, disrupted routine, loud sound—triggers a deep, plaintive expulsion of emotion. SMACK! SMACK! SMACK! went the sound of his knuckles bouncing off the side of his head. From what we understand, this is a coping mechanism, however desperate, of people with autism. Any sensation—even his own hard fists against the skull, seem to scratch some itch seated way deep in his mind, a perversely soothing reaction. And if that doesn’t do the trick, perhaps just bashing his head into the bare floor or nearest wall will. At this moment, he’s vacillating between all three.
By the time I reach the room, Kat has already grabbed Alex’s protective helmet. He’s had a helmet like this for over 4 years. When he was smaller, it was relatively easy to slip it on over his head and fasten the straps under his chin, much like a bike helmet. But Alex now weighs almost 100 pounds and is built like a fireplug with moves like a competitive wrestler. He is stronger than he has ever been. And even with Kat straddling him like a cowboy riding a bucking bronco, she cannot secure the helmet to his head. I kneel down astride him and help her close the thick plastic clips. He’s trying to bite my fingers as I do so.
But this alone does not stop the rage from inside of him bubbling out in thick, unsettling globs. For along with the slapping of his hands and thrashing of his body, he’s screaming a torrent of atonal yelps we’ve described as his “pterodactyl voice.” Though none of us have ever heard what a prehistoric flying creature might have sounded like, the image of some massive, seriously pissed-off creature with sharp teeth and a sour disposition are presently what we’re up against.
Just wearing the helmet presents a dangerously ironic opportunity for Alex. Although he is now relatively safe from injury, he lacks the ability to mollify that agonizing need to quell whatever inscrutable feeling he has inside his head. The cushion of the helmet dulls any strike he may attempt against his skull—so he tries harder. The helmet can now be used as a battering ram, like a football player not following the rules of sportsmanlike conduct. He can now use it as a weapon. Alex lunges at me headfirst.
“I got him! I got him! Just get out!” I yell to Kat over the din, trying to at least clear the room of any other potential victims. Kat slams the door behind her just as Alex’s helmet thuds into my rib cage like a punch.
Though surprised, I am not winded, nor hurt. I still am much larger than Alex, and craftier too. Using my hands to push him away, I place one hand on his helmet and hold him at arms-length.
I can hear Drew’s young, emphatic voice, pleading from the hallway, “ALEX! AL-EX! PLEASE ALEX! PLEASE! PLEASE STOP YELLING!”
He’s trying to help in any way he can, though as only a skinny 10-year-old, he’s no match for Alex’s strength and aggression. Kat shepherds him away from the noise and into the living room in an attempt to sooth him. Alex has him rattled now, a still-new and distressing reality.
Back in the bedroom, I’m holding Alex at bay with arms fully extended, my hands on each of his shoulders. Snorting out flared nostrils, he’s now trying to kick me. Bare feet fly wildly like maniacal pendulums. With such force he loses his balance. I take advantage of this and allow him to fall butt first onto his bed. A simple twin size mattress, it rests directly on the floor, partially slid into the room’s small closet, doors removed. This creates a small, slightly enclosed space for Alex to curl up in and fall asleep—normally, that is. Not tonight, not now. He continues to squirm and fight me, fists clenched and coming my way.
Blocking the blows is relatively easy, as their arc is compact and clearly telegraphed. He’s so enraged that any sense of dexterity or cunning is completely absent. But there’s no change in his temperament. Alex refuses to settle down.
“C’mon Alex…calm hands…calm hands! Easy! EASY!” I exclaim, trying to employ words and phrases that he has responded to in the past. All in a voice that belies my own worrisome emotion. I’m trying to be calm too. But nothing’s working. Nothing de-escalates. He continues to wail and rage. His body writhes beneath mine. He’s in agony.
By now I’m sweating. My pulse throbs in my temples. I’m breathing fast. I hear Kat call from behind the door.
“Dave? Are you okay?” she asks. “Drew’s really upset.”
I can hear Drew whimpering outside the door. They can both tell I’m struggling.
Behind the helmet’s clear plastic faceguard, Alex’s face is red and wet with sweat and saliva. He is literally spitting mad. It’s taking all my effort just to keep him on the soft mattress. As a last resort, I lay my chest upon his, like a wrestler pinning an opponent. Alex responds to my weight in the only way he can—thrashing his helmet against my head, crushing my left ear. Additionally, he apparently has enough air in his lungs to let out a bloodcurdling scream.
I fly for a living. I’m often gone for many days in a row. In what few brain cells I have that is not presently focused on Alex and how I can contain him, I think to myself what Kat and Drew would do if I wasn’t here to help. This could have easily happened with me half a world away.
It’s in that moment that I realize this situation is critical. An emergency. We need assistance, right now. I press my hands hard against Alex’s shoulder joints and extend my arms, locking him fast against the bed.
“Kat!” I yell to make sure she hears me. “Call 9-1-1.”
She doesn’t question me, doesn’t hesitate. A few seconds later I hear her voice speaking in the kitchen.
“Yes…uh, our son has autism. He cannot speak… We can’t control him any longer.”
My heart sinks as I process what I’ve just done.
“Hold it together, dude…hold it together,” is all I can say. My voice practically a whisper under my breath. I realize I’m talking to myself as much as I’m talking to Alex.
We live less than a mile away from the nearest fire station, so the ambulance arrives in what seems like seconds. A fire truck pulls up behind, red and white lights slicing through the night on our quiet side street. Alex’s service animal Merrows leaps off the sofa and runs to the window facing the driveway. She erupts in a fusillade of barks and woofs. She was shadowing Kat and Drew in her own attempt at soothing—if not Alex—anyone.
I hear the front door open and two EMTs enter our house. Stunned and overwhelmed by all the commotion he sees plainly with his eyes, Drew begins to cry. We’ve never had to call the paramedics before. Trying to keep the hallway clear, Kat sends Drew into his own bedroom, with Merrows to assist. I hear him sobbing hysterically. I wish I could get up and sooth him, too, but I’m busy trying to do the same for Alex. He’s the one that’s the danger to himself and others right now.
Both EMTs find their way to Alex’s bedroom. They are tall, thin and surprisingly youthful looking—no older than 25. They wear identical dark blue jumpsuits. “What’s going on?” one of them asks simply.
Still straddling Alex with my hands on his shoulders, I swallow to clear my throat, then try to explain the situation as quickly and succinctly as I can. “Alex has autism. He is also non-verbal…” I go on to add that he has been through an eventful past few weeks with issues at school and rocky reactions to prescription medicine changes.
“And until only a few minutes ago, I have never seen him try to lash out and try to hurt me with such willfulness,” I state ruefully. “So, it’s bad.”
I conclude with, “It’s all I can do just to hold him down.”
One of the EMTs squats down next to me and attempts to converse with Alex. “You not feeling so good tonight, buddy? You having a bad night?”
Alex reacts to this strange man with a voice he’s never heard before with a glare and an atonal moan.
“Aieee!” he exhorts in a voice entirely too loud for the EMT, and for everyone else in the room for that matter.
I hear the front door open again. Merrows reacts with a chorus of barks from where she stands behind Drew’s bedroom door just a couple of feet away. A few seconds later, two police officers enter Alex’s tiny room. Thick bulletproof vests and walkie-talkies strapped to their chest make them appear much more like linebackers than public servants. Nonetheless, they are polite and professional.
“How long has he been acting this way?” “Does he have any allergies?” “Is he tired?” “What would happen if he takes off the helmet?” “Is it true he cannot speak at all?” On and on the questions keep coming.
Soon enough, the first responders in the room reach a simple conclusion.
“Let’s bring him in. Can you stop holding him?” asks one of the EMTs.
I react without an educated answer. “Maybe, but I don’t think he’s gonna stand still. He’s stronger than he looks.”
By now, Kat has entered the room. “You’re gonna need to restrain him.”
It’s evident that there is no crime scene here, so the police step aside to let the EMT staff do their job. A gurney is wheeled in and moved next to Alex, still pinned to the mattress by Yours Truly.
It takes both EMTs, assisted by Kat and myself, to lift him and place him on the stretcher. Even shackling his hands into the wrist restraints takes effort.
I watch him wiggle and cry as he’s secured. “This is the hardest thing I’ve ever had to do in my entire life,” I mutter ruefully to the nearest police officer. Now it’s my turn to cry.
Alex is still wearing his helmet. Sensing his fight may be over for the evening, he finally falls silent for more than a minute in a row. “It’s okay, pal. We’re just taking you to see the doctor tonight…” I try to be soothing myself. I don’t think I’m doing a good job.
As Alex is wheeled out of his room on the stretcher, Drew calls out to me from the small gap in his doorway.
“Are you okay, Daddy? I heard Alex get so upset. Why can’t he stop whining?” Drew’s concern for me and his mom are real and extremely heartening. We just don’t have many good, concrete answers for him. God, I wish I did.
“Yes, Drew…I’m fine.” I don’t know why, but I lie. Really, this is the hardest thing I’ve ever done in my life. I am pretty far from fine.
“Will Alex be okay? Is he gonna ever come home?” Drew is choking back tears.
Kat answers him before I can. “Absolutely. These nice people are just taking him to the hospital to get checked out and to cool off a little.” Drew whimpers again. We have not convinced him.
I grab my coat and phone, then head out the door for my first ambulance ride. Alex’s gurney is carefully lifted into place inside, then locked in place. After the double doors are closed, I climb into the cab of the ambulance. (To be continued.)
Have you ever had one of those days that is more eventful in ways than you could ever imagine?
‘Eventful’ in this instance is defined as the ability to jar one’s conscience into the realization that life presents itself in ways and examples that blows the mind.
If that sounds too cerebral or numbingly self-important, let me put it another way: my life shocks me in breathtaking and heartbreaking ways. I felt like the needle of a Richter scale tracing my world. Sharp peaks and jagged valleys. All really close together and totally unstoppable.
I woke up 23 hours ago in the bed of my hotel room in Munich, Germany. 7 hours ahead of the central time zone, I had ample time to shower, dress and then wander the nearly deserted streets of this quintessential German city just as the sun was rising. It was cool and still, -1°C. Simply walking the cobblestone sidewalks and plazas, mostly devoid of others this Sunday morning. The intermittent chime of bells hung in century-old spires gave me hymns for a church service I attended with my senses. I ducked into a local bakerie, finding the perfect pastries to accompany a bracing cup of tea as my breakfast.
A few hours later, plopped in the right seat of an enormous Boeing 777, I was steering the aircraft north and west over the North Sea, then off the coast of Iceland, over Greenland and down southwestward across Canada. My first actual landing here at O’Hare in gusty winds as gently as I could manage and hope for. My check airman and both of our “relief” pilots said I did well and shook my hand in congratulations. “Welcome to the fleet!” Thanks. Really.
That’s been a dream of mine since, I dunno, 6? Check that box.
I drive home, a couple of presents for Drew and Alex tucked into my suitcase and a bottle of German wine for Kat under my arm. Triumphant, I wave to her as she sees me pull up the driveway. She looks surprised to see me.
“I thought you weren’t coming home until tomorrow!” No, silly, today! Alex is at her knees, pushing against the door to get outside.
She relents and he succeeds, rushing up to me in that kinda vacant, kinda “hey, I know you” look that I’ve grown accustomed to given his autistic mannerisms. His eyes meet mine, then shift away. He yanks at the left rear door handle of my car and climbs in. He wants to go for a ride.
Fine with me. But where’s Drew, I ask.
Kat tells me Drew is at my moms–his grandmother. “Drew has had a terrible day.”
Why? Kat points down to the driveway we are standing on. Beneath our feet, Drew has written–to no one in particular–a five sentence paragraph in blue sidewalk chalk. Obviously of his own volition.
“Alex was not being nice to me. Today he kicked, punched and scratched me. It makes me very sad. I don’t know what to do. Do you?”
Kat adds, “Yesterday was one of the toughest days I’ve ever had with Alex. He lashed out at me, Angela (one of our caregivers) and Drew. He took it especially hard. I brought him over to your mom’s so he could have a break of his own.”
“I didn’t want to tell you when I spoke to you yesterday. You were having such a great day…” She admitted.
The sublime beauty of my morning in Munich, my smooth flight home and my first honest-to-goodness landing in a 450,000 pound widebody jetliner has been eclipsed by news that my family was haggard and reeling from a physically and emotionally exhausting weekend.
That Richtor scale needle jumps up, then down so so so fast sometimes around here.
I buckled Alex up in his seat, closed the car door, ran inside and changed out of my uniform. Sometimes Alex needs a car ride, or a trip to the playground–or both–to reset his disposition. I told him we were going to do both.
To a big local park we drove–his favorite. He leapt out of the car, proceeded to run to the slides and swingsets. Other boys and girls and their parents were there too, taking advantage of the mild temperatures. I shadowed Alex closely, knowing well that he could easily run off a ladder, or into a swing or, worst of all, into another kid. I chased him like this for about 15 minutes. Alex moved constantly. Other than pulling ropes of saliva out of his mouth and playing with them, he actually behaved quite well.
Another dad called out to me. “How old is your son?”
Not expecting such an inquiry from a stranger, especially when it’s obvious Alex is truly different than any other little boy or girl at the playground, I turned to look at this guy. Before I could answer him, he asked another question. “Does he have autism?”
This made me freeze. “Yes, he does. Alex is 8.”
“I kinda thought so,” the stranger dad said back to me, then motioned to the much smaller boy at his feet, scooping up handfuls of wood chips and obsessively kneading them with his fingers. “My son is 3. He has autism too.”
I looked at his son. I could tell he was in his own little world, just like Alex. Oh man. This father is just trying to allow his son an outlet–and maybe a little release–from the straightjacket of autism. Just like I was trying to do.
“It’s good to see you doing what you’re doing with your son”, said the dad. Funny, I felt the same way. I smiled back at him and offered my hand. “I’m Dave.” He told me his name.
“Right back at ya. Others will never know the lengths we will go to or the depths of our patience we will show…sometimes.” He smiled back and nodded.
By now, Alex was darting off again, so our little bonding moment was quickly over. Scarcely a minute later I had loaded Alex up in the car and was driving him home. In the whirlwind of events around here, I had already forgotten the other dad’s name.
After dropping Alex back off with Kat at the house, I went to pick up Drew. Since he was expecting me tomorrow, not today, the surprise was a delight. For both of us. Drive-thru cheeseburgers, a new Minecraft figure and a big bag of genuine German gummi bears later, Drew crowed, “This was the best part of my weekend!”
And that’s it. The seismic needle that is my life works both sides of the case whether I want it to or not. I was furloughed for a total of 8 years, but that’s what happens in my chosen profession. I didn’t bargain for a son with autism, but I knew I always wanted to be a dad. You just get what you get. I chose this.