Autism Speaks

Levi © 2023 Craig Dahlberg

There’s a catchy autism awareness bumper sticker I see around town; maybe you’ve seen it, too. It says, “Autism Speaks.”

It’s a catchy phrase because I’ve experienced that frustrating non-verbal characteristic of autism. I’ve never had a conversation with my 10-year-old grandson who has autism. The non-conversation is not because we’re never in the same room, and it’s not because we don’t love each other. It’s because of autism. As a youngster, Levi enjoyed the monosyllabic language any typical two-year old utters. In the garden, his hair scrambled and sticking out as if electrified, he would point and proudly call out, “Bird! Bird!” just like his father had at that age, many years before. Stumbling forward, eyes wide, he would seek out another bird to practice his language on. Other words emerged, appearing just as his small-person personality was beginning to bud and to bloom.

But then, gradually, like a weighted blanket drawn over part of his brain, his communication gradually quieted, then nestled into numbness. Slowly as the tide retreats, the silence gathered, and eventually, without fanfare, Levi just stopped speaking. Mysteriously, something in his brain stopped the typical synchronization with the fresh-blossoming world around him, and the silence moved in.

Autism is a strange thief, picking and choosing different skills to manipulate in different brains. The boy who lives with his mother two doors down the street suffers from a kind of autism with no “Off” switch. Their house is a museum display of a mind that cannot turn off, autistic developmental history scrawled onto ruined walls with crayons and magic markers. His is a brain possessing a limitless mania to disassemble pieces of electronics that were previously functional, and an unending requirement to express language like an open faucet with a broken valve. Or, more accurately, controlling his need to communicate is like trying to turn back Niagara Falls.

Contrast him again with our Levi, absent of the ability to generate any conversation at all. When energetically prompted, yes, he can repeat words, but they hold little meaning for him. They are learned behaviors, empty containers to comply with one-word instructions of those around him. Birds on the wing no longer speak to his soul.

Yet Levi is happy. He expresses gratefulness through body language. He has learned to hug! He rolls upon our bed, over and over, enjoying the exquisite softness of the bed covers. When he takes a shower, there is no stream too strong or too long to satisfy his love for water. And he laughs, oh, can he laugh, great belly laughs that contaminate a room with joy.

Is his autism at times discouraging? Yes. Hopeless? No.

Many years ago, when Team Jesus rolled into town, it was like nothing else anyone had ever witnessed.* A team of modern-day medical experts could not have done better. It was not really a three-ring healing circus. It was a One-Man show, with Jesus in the center ring, the other rings empty save for those needing his healing service. As the gospel song testifies, “Jesus on the mainline (—in this case, the center ring—) tell him what you want.”

The lame? Zap! Done. Walking again.

The blind? Biff! No problem. Vision restored.

Crippled folks? Boom! All those in attendance leave this meeting under their own power.

Those who couldn’t speak? Hurrah! Words given, conversation gained.

Wait a minute…”those who couldn’t speak”? That’s autism! Jesus recovered speech for the autistic? But back in the day, there was no such disease diagnosed as “autism.” Yet it happened.

No one knows exactly how autism works, where it comes from, or what triggers it. But I understand autism just a bit because I confess that I, too, have “it,” autism, that is.

I have the kind of autism that robs that part of my brain of certain kinds of speech. It’s the autism-like cloaked part of my brain that takes kindness for granted and does not show enough gratitude to the grocery clerk or the waiter or the neighbor. It’s the part of my brain that does not say, “I love you,” to those dearest to me. It’s the part of my brain that does not thank for my health, for my bank account, for this day, for the sun. And yes, it’s the part of my brain and my soul that expresses little gratitude for the song and the flight of the bird, bird, bird.

Indeed, autism is a spectrum, with great variation of effect. And a great variation of lessons to be learned.

So there’s hope for us all, wherever on the spectrum because, well, we have got to believe, we cannot forget—we must say it aloud—that all things are yet possible.

For surely, Autism Can Speak and Does Speak to us all.

*Matthew 15:29–39

The Decades


Each new decade of our life signals new ends and new beginnings. Perhaps a new decade reminds us that maybe, just maybe, we are ushering in a smidgen of new wisdom into our lives. If we are fortunate, grateful endings and unspoiled new beginnings can be a part of this decade-aging process.

This year, I rounded that new decade corner by entering a new, “I’m Now-in-My-70s” decade. Make way! I’m already seventy-times-round-the-sun age! How could that happen? Just yesterday, it seems I was making a figure of my first grade reader’s mascot, Penny the Cat, cut out of construction paper and handsomely colored with crayons. Years became decades. Navigating college lunch lines and managing social circles pushed thoughts of Penny far to the side. Falling in love and finding a job and raising a family, all while trying to figure out who I was—and would become—were exhausting and all-consuming. More aging decades of ends and new beginnings emerged and disappeared into fog. And then came the Golden Years and retirement, that vast canvas scroll of uncertain length. So much already behind. Formal education, done. Children, grown up and on their own. Check. Career, or make that plural careers of unequal lengths and varying quality. Got ‘er done. In hindsight, was I actually designed to evolve into whom I have become or what I have done? Never mind. It’s all in the rear view mirror, all bound together, sometimes tidy, sometimes barely held with crude baling wire.

There remains one unlikeliest constant companion in all this sea of decade-swapping change—my primary care physician. He increasingly populates more appointments on my calendar with each passing year. He is now 87 years old, and I thought he was elderly when I first retained his services, 25 years ago. He’s a remarkable man, having reared two sets of twins and a several others as well. On his days off, my doctor is a flight instructor at the local airport, something he’s done for 40 years.

With each weigh-in at his medical office, I vainly empty my pockets of all extraneous possession. I deposit loose change, keys, pencils and pens, even dental floss on the table before stepping upon the weigh-in scale. Still, each succeeding annual checkup records yet another pound or two of additional girth. Then the inspection begins, first the easy stuff—ears, tongue, nose and throat, working up to the pokes and prodding in the belly and groin. The tour then explores those naked tender spots that I myself have never seen with my own naked eyes, those remote regions requiring my physician to navigate with finger probes, accompanied by comments, “Ah, I see!” But I cannot see any of it.

Last week, this primary care physician and I entered into a lively debate about arthritis pain medications and their accompanying side-effects. Prepared in advance for this discussion, I unabashedly displayed the sophomoric research I had gleaned from the Internet. He was not impressed. “So you want to suffer on a daily basis in the remote off-chance that this medication could shorten your life?”

“Well, yes, I don’t want to die unnecessarily,” I responded, rock-solid sure of my YouTube research footing.

“I have a different take on that,” he suggested. “We don’t have yesterday. We are not promised tomorrow. All we have is today. And I believe in living it, today, the best that we can. Make full use of today. Take the damned medicine.”

“Oh, and one other thing,” he continued. “You know, we’re all going to die sometime. Something or another will get all of us, right?”

Once I got home and the embarrassed flush had cleared my cheeks, my brain engaged enough to recall a passage from the book of Hebrews. Yes, that Hebrews. “By His death, He could break the power of him who holds the power of death…and free those who all their lives were held in slavery by their fear of death.”

Welcome to my 70-year decade. Should be a fun ride.

Restoration

Imitating the moves of a geriatric ballerina cost me a year of good health. A practiced and willing orangutan could have performed the right-hand to left-toe reach-around hold without injury. Unfortunately, no such orangutans were present on the day my father needed his couch re-situated upon its wooden block risers, so I performed the risky contortion—and I survived the back-wrenching ordeal. The Flying Wallendas could not have been prouder.

Until, that is, the next day, when, like amputated insect legs, my lower limbs felt disconnected from my body. I wasn’t sure which way they were headed. Balance was unpredictable. Numbing weakness and throbbing aches took up residence in my back, legs and ribcage every day since.

My year-long quest for restored health featured x-rays, MRIs, steroids, physical therapy, neurologist nerve-tests, a series of two epidural injections, and six acupuncture sessions. Finally, a neurosurgeon performed what seemed the most elementary of tests: he tapped my elbows, checking for reflexes, and found that there were none. Absolutely none.

A new MRI revealed that the problem all along had been in the thorax, not the lumbar part of my spine. The neurosurgeon’s pronouncement, ”You have significant spinal stenosis and require surgery. This is not an option. Without it, you could become paralyzed.”

Twelve temporary staples now hold my skin together while the underlying backbone heals. Ten fragments of a ruptured disk were removed; while the disk was damaged, it was not destroyed, eliminating the need for fusion screws.⠀⠀⠀⠀⠀⠀⠀ ⠀⠀

Tunneling beneath the skin, long-dormant nerves are now re-awakening, re-uniting with long-separated relatives. And as they celebrate, waves of itching flesh and random shooting pains announce they are ready to party.⠀⠀⠀⠀⠀⠀⠀ ⠀⠀

Welcome home, legs. Welcome home, spine. Welcome home, burning, displaced nerves around my stomach. We are at peace once again.

Colonoscopy

The Winter Olympics have the luge event, toboggans violently hurtling tightly-fitting passengers down a tube of pure ice, slick and smooth as a child’s slide descending from an ice castle.

Instead of the luge, doctors have the colonoscopy. Like the luge, it requires guidance using surgical precision, and it necessitates traversing a long and winding passageway. Unlike the toboggan, the required equipment carries no passengers along its slow, meandering course. It delivers hi-tech equipment, snapping pictures, snipping samples, and performing minor medical corrections along its medical mission.

I’m now in the hospital’s gastro-intestinal waiting room. All around me there are procedures underway. Sloth-slow devices are creeping carefully along, fiber-optically photographing dark tunnels of colonoscopic flesh.

Meanwhile, in my waiting room, overhead televisions project the Winter Olympics, competing athletes performing sports perfection. If I’m fortunate, a luge event will be displayed on my television—sleds slicing breakneck down icy tunnels. At the eventual conclusion, a winner will be declared; medals will be awarded to the athletes atop a victor’s podium.

At the end of today’s event in my G.I. waiting room, a drugged patient with temporarily impaired memory will emerge and be rewarded with tourist-like photographs snapped along the slow, abdominal journey. Unlike the Olympic festivities, there will be no victor’s podium ceremony. No anthems played.

Well-deserved praise goes to the eventual breakneck-speeding Olympic luge champion–national flag unfurled, anthem playing in triumph.

And hail to the slow-motion, sloth-speed, fastidious colonoscopist for polyps discovered, removed, and clean bill of health restored. Surgical gown discarded, the hospital speakers page this doctor, urging him to yet another slow-motion, high-performance venue.

In the ER

In the ER, getting Jackie checked out for possible gall bladder problems. Seeing folks who are suffering is always troubling. In additions to his obvious injuries, this fellow sitting next us had no legs below his knees. So he probably didn’t fall off a ladder. At least, I hope not.

The iOlympics

I’m an Olympics junkie. I know that because during this year’s games I‘ve been unapologetically watching synchronized diving, beach volleyball, and badminton cheating scandals. These sporting events would typically garner my apathy. But during the Olympics, the post-event television reruns keep me up too late at night.

It’s enough to make me wish I excelled at either an exotic or uncelebrated sport. Any sport will do. All the hubbub makes me want to compete and excel at something.

But how do I identify that special sport? The trick to Olympic excellence is often whittling down to a very narrow, specific sporting event. There are dozens of niche specialties in sports such as track and field, swimming and gymnastics, each event intended to highlight the expertise of a person matching the requirements of that special niche. Can’t run a marathon? No problem. How about 10,000 meter? 5,000 meters? 3,000 meters? 1500 meters? 800 meters? 400 meters? 200 meters? 100 meters? 60 meters? See? There’s something for everyone.

I’m also secretly grieving my now-absent sporting prowess. Once universally recognized as the fastest runner in my elementary school, my glory has faded, leaving this former sixth grader not-so-impressive and not-so-imposing.

I need a new sport in which to compete—perhaps a much more specialized, personal competition, a sort of iOlympics. But still, how do I discover my own uniquely tailored made-for-me iOlympic event?

A few months ago, I complained to my doctor about ongoing lower pack pain. After an x-ray, he revealed the prognosis. I didn’t appreciate the chuckle in his voice as he told me.

“There are three certainties in life,” he began. “Death and taxes are the first two, and you’re fortunate to have experienced only one of those so far.”

“Great,” I replied, sensing I was being lured into a medical humor trap. “What’s the third?”

“Degenerative disk disease!” he grinned. “It comes with the territory as we get older. Some people feel the pain more than others. For you? Eh—it’ll probably get worse over time. That’s how aging is, you know.”

On my way home, I flicked on the seat warmer in my car. It seemed to help ease the lower back pain. I haven’t turned it off since. But in 100 degree summer temperature, it can sure make the backside sweat.

Thus I discovered my iOlympic event. Like the pentathlon, my physical disciplines are several strenuous elements combined into one back-pain busting event: stretching, pulling, arching, bending, and lifting to develop core muscle toning and strong abs.

No, it’s not exactly an Olympic event that could result in a gold medal and the obligatory national anthem, but it’s good enough for me. My gold medal iOlympic routine will help to keep me on my feet and out of the doctor’s office.

Now that I’m getting pretty good at one iOlympic event, I’ve got a feeling I’ll be adding some more performances to my repertoire. The Ten-Pound Belly Fat Drop? The Eight-Hours per Night Sleep Stretch? The Extended Book Reading Marathon? The Staying on Budget Until the End of the Month Grind?

There are probably plenty of iOlympic events to go around.

In the Dental Chair

If a street punk informed me that he would be removing my teeth, I would gallop my way to safety, feet pounding and arms flailing.

But a visit to my dentist poses no such threats. His job is to preserve and protect my pearly white crown-encased teeth. He has every inch of my mouth mapped, memorized and x-rayed. He knows my mouth better than I do. If a lunar rover were small enough, he could remotely land it between molars number 19 and 30.

He is a spelunker of sorts, exploring regions that I myself cannot see. I rely on him to do that task. He refers to tooth numbers like familiar addresses that he casually visits every six months, reporting their status to me like a barber shares the local gossip with his clients.

Sitting in a dental chair provides us time to think. Despite being in the presence of a small audience, we are not expected to say a word.

There’s time to think….

There’s a special relationship of trust we share with those who have more intimate knowledge of specific parts of our body than we, ourselves, do. They are witnesses of our inner workings and maintenance requirements. Still, it’s unnerving when medically-licensed spelunkers travel into the hidden reaches of our bodies that we will never be able to see with our own eyes.

I never met my adenoids—and never knew of their existence—until I was ruthlessly assaulted by a barrage of infections that made swallowing a fearful event of searing pain. As a child living in Germany, doctors whose language I could not understand told me my adenoids had grown defective through massive and repeated bacterial attacks. I was hospitalized and put to sleep; the offending organs were harvested by entering my nasal passage with cold stainless steel implements. That was my first experience with medical spelunking, the practice in which a physician explores parts of the body which are invisible to me.

Later, other physicians would pull, poke and examine other parts of me that I had never seen. “How’d you get that scar?” one doctor asked, pointing to the lower region of my back.

“Uh, it’s nothing, I don’t think,” I pondered, his question catching me off-guard.

Finally I recalled what he was referring to. Decades earlier, my back had skidded across the bottom of a too-shallow landing-pool at the end of a steep slide ride at a water park, reddening the water and my swimming suit with pink blood. I had never grown personally acquainted with the wound except by gyrating wildly using a three-mirror setup in my bathroom. Even with that arrangement, I could only view the reflection of the wound. My physician, however, trumped me. He, unlike me, was an eyewitness to the medical history permanently etched upon my spine.

Some explorations are far more intimate. At my annual general physical exam, my doctor reserves the prostate exam ritual for the grand finale. Like a pitcher winding up for the third called strike, he extends his arm high into the air and outstretches his fingers. The end of the windup: he pulls the rubber glove on with his free hand and releases it. The rubber glove snaps loudly as it protectively seals his hand, which he flexes to ensure a secure fit.

He asks me to prepare myself. Then he strikes, quick as a serpent.

“Ugh!” I groan. That’s the worst part of the physical exam! I hate that!”

He masterfully pops off the rubber glove. “I get that a lot,” he responds impassively. “It’s no picnic for me, either!”

There are, apparently, some spelunking destinations nobody really wants to visit. I will trust his report to enlighten me concerning this region of my body that he knows far better than I.

Suddenly I return to reality. I am back in the dental chair. The two faces stare down into my gaping mouth, which by now is developing stretch marks. But all is bliss; compared with my recollections of other medical experiences, today’s dental provocation seems minor: the sting of the needle entering my moist unsuspecting cheek, the drool forming droplets and descending my numbed lower lip, the artillery of the drill destroying my ten-year-old twelve-hundred-dollar-after-insurance dental bridge, long past its useful life.

I stare down the blinding lights that have the illuminating intensity of construction zone flares. A sense of warm satisfaction blankets me like the heavy dental x-ray resistant shield that often lies across my lap; I recognize that, during the past 20 years that I’ve been a faithful client of this dental enterprise, my dental repairs have funded the purchase of the hyper-electronic double-thrust orbital magneto drill that is now chewing up my teeth.

No wonder I feel connected.

Let the spelunking continue.

I deserve it.

ER #16

On Monday night, I escorted my wife to the hospital. She had somehow acquired an extremely painful and potentially very dangerous abscess. The emergency room was loaded with a riot of bacterial- and viral-infested and otherwise-wounded victims. Some displayed hastily bandaged injuries still seeping blood. An elderly woman moaned in her wheelchair, clasping a cloth over her face as she rocked back and forth, while her husband, supporting himself in his own walker, stared blankly alternately at her and the wall. There was rare seating available for emergency room johnny-come-latelies. I estimated 75 people crammed into this bin of ailing people. “Golly,” I thought to myself. “If it’s this bad in America, what’s it like in Bangladesh?”

Eventually, after completing multiple copies of forms each repeating the same questions, my wife’s name was called. At least, we think it was called. With no speaker system in the room, the hoarse yells of the hospital staff were barely audible above the ruckus of shrieking babies, the generalized sniffling, sighing, and moaning of the occupants, and the horseplay of those who obviously only accompanied the core populous of the emergency room.

She disappeared behind curtained glass doors. I waiting for her to be processed—blood- and urine-sampled, fingerprinted, name-and-birthdate-verified, mother’s-maiden-name-queried and the like. I passed the time chatting with my high school-aged neighbor about the perils of football while examining his purpling right ankle. More than two hours later, when my wife had still not returned, I asked about her progress. I was informed that she had been admitted into an Emergency Room, and, yes, would I like to go in? I wondered how long that I, like a hound dog anticipating his master’s return, might have waited along with the huddled masses of our fellow sufferers.

I found my wife in a non-private group room, leaning over the frame of bed ER #25, experiencing frightful pain and nausea that made it impossible for her to lie down. Mercifully, shortly thereafter we were escorted to ER #16, where she lay down and stared at the ceiling. Eventually, a nurse popped her head in, and told us our wait for a room would not be long. Six hours later, I had memorized every inch of ER #16. I knew which medical products were in short supply and had retraced the trail of the curious dried blood drops on the floor.

Finally, the long-awaited curtain pullback from the emergency room doctor! He informed us that he would create an incision to relieve the pressure and blood from the offending abscess. Unfortunately, the procedure preceded the administration of a stiff painkiller; only a weakly numbing drug wound its way through the clear plastic tubing to the needle dripping in her arm.   

I’m glad I departed the room prior to the doctor’s medical procedure. Upon my return, my pale and trembling wife reported that the pain from the events–the slicing and enthusiastic squeezing of the barely-dulled abscess–rated right up there with childbirth. There were new trails of blood to track on the floor. I helped creatively arrange my wife on the gurney to best contain her newly inflicted pain.

Time passed slowly. The gurney was uncomfortable, not intended for extended lounging by the wounded. It was narrow and the plastic was slippery, contributing to the fall to the cold, tile floor that my wife incurred as she inaugurated a hazardous journey to the solitary men’s/women’s combo restroom. It was down the hall, hidden in the corner of the non-private patient emergency room receiving area, where patient beds lined the walls like fighter planes on the deck of a Navy aircraft carrier.

As the hours dragged on, we would each have opportunity to visit the restroom many times. I narrowly missed the pandemonium that ensued when one out-of-sorts patient yelled for help from within this restroom. He claimed he could not manage his quest for a successful “Number Two” experience alone; he needed assistance. When none came, his yelling continued until he finally exited the room, holding his prize feces aloft in his hand like a treasure-hound, for all of us to see. His triumph did not last long; nurses descended upon him from every corner, like—well—like flies on poop. I know this happened because my wounded wife witnessed it all during her long trek from said restroom back to ER #16.

The night lengthened, and I grew covetous of my wife’s little gurney and the brief naps it provided her. My chair’s legs protruded far enough that I could not place it close enough for the wall to support my head. I attempted several alternate variations. In one construction, I extended my buttocks nearly off the end of the seat so that my neck could barely catch the back of the chair. Another variant took the opposite approach, featuring the top of my head protruding over the top of the chair so my crown barely reached the support of the wall. The frailty of human anatomy proved both of these options unsatisfactory. I found myself fitfully alternating between one and the other, leaving precious little time for sleep.

ER #16 held us captive for nearly 30 hours. We greeted our first nightshift nurse for the second time at the beginning of her second night’s 12-hour shift. Doctors drifted in, all asking the same questions we had already provided the previous visiting M.D. My wife’s wound was un-bandaged, examined, and re-bandaged multiple times.

During all that time, I was preoccupied with sleep, until finally, regretfully too late, I figured out what should have been obvious. Borrowing a style from my fellow train-riding commuters, I decided to do the Train-Rider’s Head-Bob. I sat somewhat erect on the chair and allowed my chin to drift downward in slumber, risking a dangerous neck sprain should my head collapse to one side. But it didn’t. For 15 precious minutes that night, I slept; it was suddenly interrupted by the final doctor’s visit, telling us to prepare for surgery.

The purgatory of Emergency Room #16 finally concluded. Perhaps our release depended upon my eventual discovery of the successful, if brief, napping technique.

The doctor told me that my wife would be in surgery for an hour, and would I please stay in the surgery waiting room. Two and one-half hours later, in the middle of my second night without sleep, and with plenty of time for my sleep-deprived brain to conjure all sorts of visions of what was transpiring, I was informed that she was out of surgery and resting comfortably in her room, and would I like to see her. You bet.

Tonight we are home. We’ve been gone two days, which is 48 hours, or 2,880 minutes, and it felt every second of it.

Meanwhile, the waiting room at the hospital is likely still full.