Monday, November 23, 2015

1. About The Boy

   


This is a true story. I feel it’s important to add that disclaimer seeing as I’m (somewhat [barely]) known as a storyteller, so one might be forgiven for assuming a certain manipulation of events for maximum dramatic effect. You know: BASED ON A TRUE STORY and all that. Personally, I’m inclined to suspect any real-world narrative that contains foreshadowing, deus ex machinas, and eleventh-hour plot twists, and so should you. Life doesn’t work that way. That’s why I need to tell you, up front, that every word of this is true. This happened. It’s not Ben-Hur, with lepers healed by magic rain; but here, outside the realm of narrative fiction, it comes close. For me, anyway. It comes very close indeed.
I want to tell you about my son, Garyth. About Thanksgiving 2014.
This is the most intensely personal thing I've ever written. I'm going to try not to cry as I write this, but I can't promise anything; and as The Professor once wrote, “not all tears are an evil.”


I

Every story needs a hook right out the gate. An opening stinger. In film terms, we call it in media res: beginning mid-action, like a Bond picture. There’s no high speed chase in this account, no guns, and no fistfights, so the best I can do is start with a doctor’s office in Baltimore.
It was a Friday morning in mid-March of 2013, just days shy of my thirty-seventh birthday. I sat in the waiting room, ready for a routine check-up that was supposed to have happened fifteen minutes ago. My wife sat beside me, chatting away; Garyth, then eight months, bounced on my knee.
Today was a big day. Once we got out of here, I was off to sign the distribution contract for my first film. I’d done it: to mix metaphors, I had, like Fitzcaraldo, dragged an independent feature over a mountain, and soon the world was going to see it. COMING SOON TO A BEST BUY NEAR YOU. I’d dreamt of this moment since I was a boy, been in so many ways shaped and defined by it, lost friendships over it, blown out credit cards paying for it; and here I was, at last, on the threshold of my destiny. I could almost taste the two bottles of celebratory wine I planned to empty once the ink was dry.
And then, in the midst of my reverie, Garyth turned his face toward mine and looked me straight in the eye – a thing he did so rarely, a fact I chalked up to him being a baby and still primitive in terms of social development – and his open mouth became a beautiful toothless smile as those peculiar mists seemed to clear from his eyes; and in a voice high and clear, he spoke his first word: Daddy.
I laughed and told him to say it again, but he looked away with that faraway expression I recognized from so many photographs of myself as a child. A dreamer, just like his Daddy. But never mind that: this was an omen, on this day of all days. It was a sign of things to come.
And that was the last time Garyth spoke.


II

It became obvious that Garyth was different. Everything seemed to happen more slowly with him, or not at all. It was a year and a half before he was walking. He refused to interact with anyone besides Laura or me, and he never wanted to be held. He grew attached to small red objects he insisted on taking wherever he went lest a volcanic eruption consume our lives. Much of this was assumed to be the result of a traumatic period in the hospital just before his first birthday, when a probable diagnosis of Kawasaki Syndrome led to around-the-clock treatment that left him terrified of anything that so much as resembled a medical facility. I’d had to hold him down while he stared at me – and he never stared at me, never – his eyes pleading and terrified and outraged as things were done to him, invasive things, things that should never happen to an infant. He was pumped full of drugs every hour on the hour, and couldn’t sleep for fear of the next appearance of a looming nurse with cold, shiny instruments, sharp needles, and long vertical shadows. He screamed as they did things, so many things, and I told them to, I insisted they do them, anything to make those cauliflower-shaped growths on his head disappear. Anything to ensure his heart would continue beating past his third birthday, so we could take him to a playground instead of a mortician, buy him Batman t-shirts instead of a tiny suit for burial, a tricycle instead of a coffin. They needed urine and he wouldn’t give it up. So I held him down. So many times, for so many reasons. I’m having trouble just writing that, and if it sounds terrible, it’s because it is. I promised you a true story, and sometimes the truth is fucking awful, including how we respond to it.
We took the speech delay, as well as his unwillingness to be touched, as a byproduct of that long week at Sinai. Once we’d convinced ourselves of that, he began making strange tapping motions on his knee. Then stacking his toy blocks. Arranging his alphabet letters in patterns. Staring at ceiling fans. Laura was always dismissive (“He’ll talk when he’s ready, some kids don’t do this or do that and then one day it all comes out,” etc.). She simplified “Bamboletta,” the four-syllable name of his favorite doll, to “Baby” in the hopes he’d try to say it. He didn’t. He’d grunt if he wanted it, reaching with outstretched hand and a faraway look. Laura had a perpetual smile on her face but in her eyes a sort of capering fear, dancing like twinkles of manic light. I became more and more concerned. The tipping point was his second birthday, when I saw all of his playdate buddies in my living room: the way they interacted with one another, how they walked, their dexterity – and how Garyth, my soft and awkward little boy who stumble-ran on his toes and flapped his hands, hid in the dining room with a look of terror, covering his ears to block out the sound of Happy birthday, dear Garyth, happy birthday to yoooooooou. That was when I told Laura that he needed to be evaluated. I remember saying it as she lay in bed and I paced the room, and the way she recoiled as though I’d hit her in the face when I used the term Special Needs.
It was a process that probably felt longer than it was: first you consult with This Person, who refers you to That Person, who makes you wait another six weeks to meet Yet Another Person. I had plenty to distract myself: the release of my film, while resulting in strong reviews and modest regional press, had hardly set the world afire, and contract photography work had us living on the edge of a sharp financial precipice. All attempts to get a second film off the ground had proven fruitless. I was drinking too much and sleeping too little. Laura was working evenings, so when I came home, I’d read Garyth the next chapter of Le Morte d’Arthur, hoping to stimulate vocabulary; and then we’d take our nightly walks around the block – the distance I had to carry him growing less and less – all the while asking him to please call me Daddy again. Please, I’d say. Just once. But Garyth never spoke, staring instead at planes that flew far above us, his mind seemingly as remote and far away: the distance in direct proportion to milestones stretching unchecked before us.


III

His evaluation came two days before Thanksgiving, almost one year ago as I write this. Laura went without me; I couldn’t afford a day off from work, and we both figured he’d go through routine tests like the last two exams, then a follow-up meeting at which time we’d all sit down together to hear the results. That wasn’t the case. If I’d realized otherwise, I’d never have let her go alone.
It was close to four o’clock in the afternoon when I finally heard from her. The evaluation had been at one. I was working a camera job in a remote location, and the day’s work was complete. I was pacing and finally had to get away from the odd looks. By the time the phone dinged I’d walked down a long wooded stretch of road, far from both watchful eyes and signal range. She knew not to bother calling me there. And so that’s why I learned that my son was autistic via text message. Cold black letters on an iPhone, the short, declarative sentences surrounded by cheery dialogue bubbles, as if Laura’s news was being delivered by singing telegram, or a clown whose job it is to soften a particularly hard blow. Hi, the word bubbles seemed to say, suggesting a painted-on smile and a gloved hand clutching balloons of red and yellow and blue. Remember when you thought all that block-stacking meant Garyth was going to design houses like his grandfather? Or when you said that his arrangement of colored letters and numbers showed a flair for graphic design? Remember that? And remember when you insisted to your wife that you not wait a moment longer, and that he had to be hospitalized, and that he had to have all those meds pumped into his body around the clock for twenty-four hours when he wasn’t even a year old? Congratulations! You probably gave your son autism, you worthless fuck. Jenny McCarthy has a spot in Hell reserved just for you. And even if it wasn’t that, even if you weren’t imagining his idiosyncrasies and lack of eye contact, and even if it had nothing to do with medications or vaccines, you still didn’t spot it soon enough. You got angry when you were trying to watch some stupid movie and he was spinning in circles in front of the TV. Or he was babbling when you were trying to tell Laura some anecdote that doesn’t matter and you’ve already forgotten. Probably something some critic said about your film that made you feel like you’d created something that mattered while your boy, your creation that really did matter, was melting down and screaming and you got pissed off over another temper tantrum when in reality everything was too loud or too bright and he couldn’t tell you, couldn’t ask for help, and you got pissy and poured another drink while Laura rocked him instead of wearing something short and tight for you. He spoke exactly one time and he’d said your name -- not Laura’s, not Doggie or Kitty or something cute; he wasted it on Daddy, and all you do is agonize over your stupid movie that no one wanted to watch and all the stupid movies you’ll never make and your son, oh God, your beautiful, beautiful son will never speak again, won’t go to a normal school, will be called Retard and Stupid and won’t ever have his first kiss, won’t graduate high school, won’t have a job, and it’s your fault because of what you may have done or what you may not have done or whatever genes you passed on to him and it’s your fault, your fault, your fault, YOUR FAULT. These words: running through my mind as I walked in a daze beneath a charcoal sky that began to spit scattered droplets like accusations. When it finally opened, I didn’t notice. I’m not sure how I got back to my car, and the only part of the drive home I remember are the red tail lights ahead of me, flashing intermittently between the swish of my wipers.
I came home to a dark house. Laura was at work. I didn’t even get to see her, to tell her I was so sorry that she’d had to go alone and was now stuck at work smiling at people who didn’t care about her, or Garyth, or the fact that something innocent had just died inside our lives. No chance to hold her and be held, two parents trying to find comfort in one another. Her mother Carol was there, waiting for me, her face ashen. She hugged me despite the fact that I was filthy from work and soaked from wandering. I’ve not forgotten that. Then I asked her if I could be alone with my son. He slept in his crib, passed out cold from his stressful day. I hated to wake him, but I did, and I rocked him. I squeezed him tight. I think I might have sang him his ABCs. He didn’t fight me for once. He was just that tired, I guess. So I packed him in the car and took him out for his first Happy Meal. I’m not sure why; maybe I felt that, at that moment in time, we both needed something “normal.” Something a Father would do with his son. Here. Now. While we still could. Before we took our first steps on a road from which there was no return.
The toy in the bag was a Penguin of Madagascar. I still haven’t seen the movie. All I know is that he/she/it had some sort of rocket launcher/radar dish combo, and as Garyth ate his fries, I repeatedly fired the rocket at his other toys, knocking them down. He clapped and laughed enthusiastically, oblivious to the label he’d been given and the door that might have just closed on all the chances in life every parent assumes will be wide open for their child. And so I kept shooting his toys, and he kept clapping. It was surreal how normal it felt, being together like that, the two of us enjoying one another in a way I’m not sure either one of us ever had. I still have that toy. It’s sitting here across from me, even as I write this.


IV

We spent Thanksgiving at home as a family. We decided (or perhaps I insisted?) that Garyth’s diagnosis remain a secret for now. It wasn’t a question of shame. There was no embarrassment. I simply wasn’t prepared to talk about what I’d not yet had the chance to process for myself. Even though I’d been the one aggressively pushing for analysis it didn’t make me feel any less like I’d been hit by a car and dragged down the street for a few miles. Furthermore, and closer to my heart, was an immovable resistance to turn Garyth into a topic of conversation. Family members, friends, co-workers, film associates, personal and professional enemies both, all wringing their hands over their supermarket turkey and feasting upon the sweet, delicious drama in the Myers house. That poor little boy. I told you there was something wrong with him: all that spinning and flapping. You know the doctors weren’t one hundred percent sure it was Kawasaki Syndrome, don’t you? But Erik insisted on the treatment before Garyth reached the point of no return, and there was less than twenty-four hours to make the decision before the procedure wouldn’t be effective. Theoretically, of course. Isn’t it ironic? He might have turned his son into a half-wit for nothing. Be a dear and pass the cranberry sauce. What time does the game start?
No, there wasn’t shame. There wasn’t embarrassment. But there was guilt. So much guilt.
So we decided that, for now, we were going to ground. Two days later and I’d already ordered every book on autism from every branch of the Baltimore County Public Library system. I had a notepad filled with page after page of scribbled, obsessive notes. Things to do, not to do. Groups. Organizations. Educational options. Causes, none of which were in agreement with one another. I was in knots, reading and re-reading and trying to convince myself it wasn’t my fault that he’d said Daddy and then ended up in the hospital, never to speak again. Trying to convince myself that I could reach him, wherever he was, and guide him out into the sunlight. To save him. All I could think was: Two years and four months; I’ve wasted the two years and four months he’s been alive chasing stupid dreams and now it’s time to come back to reality. I was ploughing through everything I could get my hands on, sometimes only making it through a paragraph of might never speaks and incapable of potty trainings before I’d have to step outside and count to ten. Photos taken on Thanksgiving show a Daddy who keeps hugging his son with a somewhat shell-shocked expression.
ASD. Autism Spectrum Disorder. Retarded, as one book put it; On the spectrum, as another author gently corrected. “On the spectrum.” I always imagine an elementary school motivational poster, its bright, puffy letters of varying hue screaming IT TAKES EVERY COLOR ON THE SPECTRUM, and a cartoon dog wearing sunglasses, surrounded by happy flowers with human faces and rabbits and squirrels high-fiving one another in a show of solidarity. The sorts of posters in Special Ed classrooms filled with kids who ride short busses. Kids other kids make fun of. Kids grown-ups make fun of. Kids I’ve made fun of. Kids who don’t realize they’re being made fun of.
I swore to my son as he slept that night, his tiny face turned away from me, that Daddy was going to do everything he could. Daddy was going to be a better man. Not simply because he knew he had to, but because he wanted to. Like Garyth, I was a million miles away when Laura finally asked me if I was coming to bed, and it was only then that I realized I’d lost circulation in my hands from gripping the rail on his crib.


V

Still with me? Good.
Here’s the part that required the disclaimer way back at the beginning.


VI

There comes a time in all our lives when we wish for a do-over: that day, or even that moment, that we’d do anything to revisit. To change. In my case, if I could turn back the clock and do just one thing, one thing, differently, one thing I could give my wife out of all the thousands of I’d Take It Backs on the report card of my marriage, it would be this: I’d have made her stay home from work the night after Thanksgiving. "Black Friday." I'd tell her to call out sick, bills be damned.
Garyth has a ball. It’s blue. If you’re ever in our house, just kneel down and look: it’s probably under the coffee table or the piano bench somewhere, rolled away and forgotten. That evening, after I’d fed him a bowl of beans and played him an educational music program on the MacBook (“London Bridge is falling down / Superhero Pig can help!”), we had the ball out, and I was tossing it to him despite the historical lack of interest. The books, the online literature, all of it was discussing turn-based interaction with Kids On The Spectrum (are you seeing the dog in sunglasses now, too?). So that's what I was trying to do. I'd throw him the ball – a two-handed object appropriate for a toddler – and I’d tell him to get it; then I'd try to get him to throw it back to me, talking him through the entire process. I'm sure if you were walking past the house and heard me I'd have sounded like I was enthusiastically cheer-training some dog (wearing sunglasses): Good job! Now go get it! Get the ball! Way to go! Now throw it back. Garyth – Garyth, no, come back here. Throw the ball. Good! Good! Now look: I'm picking it up and throwing it back to you! I was talking to my son like he was a pet. If you'd told me there was a touch of barely restrained hysteria to my voice, I'd believe you.
And then he froze, right there in the doorway between our dining room and kitchen, a tiny marble statue. He was holding the ball with his eyes clouded over. I was losing him. He was going to drop it and trot away, into the living room maybe, and begin stacking his blocks into giant alien pyramids, or spinning in circles, staring at the ceiling and vanishing into that secret place where I couldn’t follow. The smile on my face began to wilt, to curdle. It was like someone had closed a valve in my heart, stopping it in mid-beat, and it plummeted into my stomach, splashing into a pool of bile to drown. This is it: this is my relationship with my son. This is what I get. It was like the taste of asprin in my mouth, like fire behind my eyes. Even now, sitting here at the dining room table no more than a foot from where I stood that night, I can see him right there in the doorway, holding that ball and seeming to drift away as my hands became fists and my jaw clenched, the pressure so great that I’d been up the past two nights with pain that wouldn’t cease. I was a hollow bundle of sticks, resigning myself to scattering in the approaching wind. Welcoming it and hating myself for welcoming it and knowing I could allow myself to do neither.
And then something happened. Jesus Christ, something happened.
The color in his eyes snapped suddenly back: vivid blue like the ball in his hands. He regarded it with a brow furrowed beneath red-golden locks. He pursed his lips. Then he raised his head and looked at me – looked at me – right in the eye. An hour of time, all in a moment.
His face scrunched, and then he opened his mouth, and a sound – a word – was released, fleeing like a captive on legs weak from long imprisonment in deep, lightless dungeons, staggering and thick and unfamiliar and beautiful, so beautiful, more beautiful than any sound I’ve ever heard and ever will; and he said:
"Baw."
(…)
He tasted the word and seemed to find it profound and baffling all at once, like a magic trick explained, or geometry understood. Looking back at me was the face of one hearing his own voice for the first time outside of distant memory. The confusion of one seeming to stir slowly from an overlong and unplanned sleep to wonder the time and what he’d missed while he was gone. Maybe I just imagined it, but that was what I saw, and what I still see when I close my eyes and remember it.
I’m not sure what I meant to say to him, but when I opened my mouth, I could only croak. So we just stared at one another.
And then: he understood.
You know in cartoons (the ones with people, not dogs with sunglasses) where the lightbulb pops up over a person's head? Yup. It happens. The look of surprise on Garyth’s face was gone in an instant as the mental switch was flicked, replacing it now with the biggest smile I'd ever seen, one that threatened, promised, to remap his tiny face. "Baw!" he exclaimed again, and bounced up off the floor once, twice, three times, as if he himself were the object in question. "Baw! Baw! Baw!"
Ball.
"Say it again," I said, and he did. "Again!" I cried, and he did, his volume matching my own.
I ran to him –
– and he darted past me, dropping the ball onto the floor. No, I thought. No, not yet, not now, and I scrambled to get it, calling after him, pleading for him to come back, to keep playing, like a blind man given thirty seconds of sight before it was cruelly snatched away again.
When I turned around he was at the bookshelf. He was pointing.
"Bah-bool!" he was half-saying, half-laughing. "Bah-bool!"
And there above him: his Spider-Man bubble wand.
Bubble.
There was no way this was happening. The time I thought I saw the Loch Ness Monster (yes, I’m being serious) had left me less utterly dumbstruck. I think that might have been when I dropped the ball, or maybe it was a second (minute? hour? lifetime?) later, as he ran from the room once again, this time to the couch.
He grabbed Bamboletta and held her up, showing her to me.
"Bee-bee!" he was saying, the excitement in his voice becoming something greater: the sound of a human being trying to communicate and knowing that he can. Garyth knew his doll’s name, and he was saying it. "Bee-bee!"
Baby. Baby.


And then things get fuzzy.



VII

I’m sitting here now, trying to remember the precise details of what happened next. It’s cliché to tell you It’s all a blur. No good writer will in good conscience describe an event thus; and yet I don’t know a better way. The events of my ride home from work the day of his diagnosis are clearer to me now than those of November 28, 2014, hazy and indistinct as they are. If I had to explain it, I’d use another hoary groaner: In that moment, my life changed forever; or maybe: Nothing would ever be the same again. But it’s true: in that moment, my life did change forever, and nothing was the same afterward. Perhaps the memory loss can be attributed to the stress of that long, emotional week. Perhaps it was the enormity of worldwide shift as the continents of my heart fused like some reverse Pangea. I’m not qualified to self-evaluate. But even now I sometimes doubt myself, and shake my head in disbelief, because surely I imagined it all, or inflated the events in some way. But that’s what happened. And I think, if I had to hazard a guess, I’d say I was in shock. In some ways, I still am. And that’s something I never want to lose: that sense of profound Experience.
But I do remember that I hugged him. I hugged him and I held him as tightly as I could given that he was pulling from my arms, not in the way he was accustomed, but out of excitement, wanting to run back through the rooms and tell me again and again the names of those three things: Baw. Bah-bool. Bee-bee. Ball. Bubble. Baby. Again. And again. He continued to repeat them as I changed his diaper, as I put him into his jammies, and after I kissed him good-night and closed the door. Mattress springs squealed in his crib as he bounced, and that mantra, over and over: Baw. Bah-bool. Bee-bee. I stood in the hall and listened to him until it at last faded and he with it, realizing and yet dumb to the fact that I knew now the sound of my son’s voice. That part I recall with total clarity.
As well as the next part.
I remember I went downstairs, back into the dining room, right where I'm sitting now. I passed the bottle of bourbon right by. I called my wife. I knew Laura was working, that I'd get her voice mail, and that was fine: but I couldn't wait for her to come home; I had to tell her now. I've never heard that message, and I don't know whether she kept it or deleted it long ago, but if I remember it correctly and were to try to describe what you'd hear, it would be the calm, measured voice of a man standing on the beach with his back to the sea as the waves, trickling between his toes, receded behind him; and he’d be there, giving a barebones, just-the-facts-ma’am account of what had just transpired, leaving all emotion out it, speaking in even, almost hushed, tones; and then, at the end, he apologizes to his wife for not telling her in person, explaining that he had to call her because "I need to tell you how happy I am right now," followed by the sudden assault of the rising blue hills behind him crashing full down, the wave consuming him, and he, crashing with it, collapsing under so much weight, breaking at last as the sea washes over him, salt rolling down his cheeks, filling his gasping mouth as he says over and over again with strangled voice how happy he is, how happy, how happy; and in that sound, both unintelligible and universal at the same time: a year's worth of guilt, of anger, of stark, naked terror; and foaming on top, a new sound, spreading with each subsequent wave: the sound of hope.


VIII

And the next morning, in the kitchen: I was making coffee as Garyth stood at the window, watching the squirrels scamper through the yard as Mommy stole those few precious extra minutes of sleep after staying up too late and hearing me tell and retell the event she’d missed, and me promising her he’d speak again, promising; and then Garyth turned suddenly, wearing now a strange look, a knowing look, the expression of one who's suddenly remembered something, or perhaps just realized it; and he ran up to me, one hand tugging on my shirt, the other pointing at my face, his eyes locked with mine with an intensity I could scarcely have imagined as I stood there, a coffee filter in one hand and a bag of Dunkin Donuts French vanilla in the other, holding my breath and seeming to know what was coming next and allowing myself to believe it in the face of all logic; and then he said that word, that same word I'd heard only once and given up asking for, long ago when my dream was to be a famous filmmaker instead of the man I hope I'm becoming; and he said, first once, and then again, and yet again: Da-da.
Da-da.
Dad-da.
Daddy.


IX

That's my story. Our story. His story. I've both over and underwritten this account, saying too much for some and yet knowing I've barely scratched the surface for others. I could write a book, and perhaps someday I will. But for now, and for those of you thumb-swiping and squinting at your iPhone, looking for a tidy anecdote that has long since passed the point of greeting card brevity, you can safely return to your Regularly Scheduled Facebook Feed: we've reached The End.
However, for all the Teddy Duchamps out there, the ones asking Then what?, I offer this epilogue:
Garyth continued to talk. The floodgates had opened. Within the week, he was able to tell me the sound of every animal on Old MacDonald’s farm (as well as a few animals from the Scottish highlands); by December he knew his ABCs; by January, he could count to seventy-five. Colors and shapes quickly followed. Bee-bee became Baby became Bambo became Bamboletta became Bamboletta is upstairs on the potty! She is POOPing! Our nightly walks were soon filled with chatter, mostly singing. If you ever drive through Parkville and see a short bald guy with glasses holding hands with a toddler as they sing back and forth about Stop signs and the number of brown or white or yellow houses on the street, or wheels on the bus going round and round: that's us. Pull up and say hi. Garyth can reply to you. I laugh every time he does. I realize I laugh at a lot of things, now. I laugh when we go to Red Brick Station and he orders his lemonade all by himself; I laugh when I come through the front door and Garyth tells me to go back to work because he’s having Grandma Time; and we laugh together, usually as we cuddle on the couch or in bed, watching TV or engaging in tickle fights. More, Daddy! More tickles! He hugs me and kisses me on the lips, sometimes at seemingly random times. Just because. If anyone wants to consider that weird, they’re free to do so. It just means more for me.
We barely had time to process the diagnosis: between the abrupt development of speech and the sudden and altogether shocking desire for affection and interaction, it became hard to reconcile the boy he'd been with the boy we were told that he really was, and then yet again with the boy he was fast becoming. We didn't sit on our hands, though; within a month he'd already been placed in an early childhood program through Kennedy Krieger called Parents and Children Together (P.A.C.T.). It changed Garyth's life. It changed mine, too. Seeing those kids, his classmates, all with various physical or mental challenges, hit me in a very sensitive place. These were Garyth’s peers, and that was frightening to me at first. Some of those children had issues so severe that I found myself in bed, late at night, after everyone was asleep, crying for them, and crying for their parents, and crying for Garyth and how scared he must be, crying and trying so hard not to wake Laura; and then the next day would come, and I’d see my son, my sweet boy who knows nothing of prejudice or labels like crippled or deformed, sitting at a table with a child so unfairly assembled that any adult would be forgiven for freezing in their tracks; and he’d be there, sharing toys or eating his bagel sandwich as if it were all perfectly natural, and he was right to act that way, because it is. My buddies, he called them. I wanted to know their names. I wanted to take the time to say hello and hear them answer. Sometimes they didn’t use words, but they answered. Sometimes we just need to learn how to hear it. They stopped looking different to me. They became fireflies.
In August, Garyth turned three, and graduated from P.A.C.T. I “outed” us on Facebook and the response was overwhelmingly positive. In September he started a preschool program for children with autism called Let’s Grow Together. The school board was prepared to deny him services because his progress over the year had been so remarkable that he was considered too “normal.” Thanks for the compliment, but no thanks. Laura and I held hands, went before the school board, and advocated for our son. We won. It’s the proudest I’ve ever been of the Myers family. And when we received his Individualized Education Program (IEP) in the mail and Laura read the stated long-term goal – for Garyth to obtain a high school diploma, something every parent takes for granted until it suddenly becomes shrouded in doubt – the waves crashed down on her as they had on me that Friday night one year ago. This time, I was there to hold her when she cried.
I began reaching out to my new community. We became involved in local autism events, and in the lives of other families. I made new friends who understand. I smile at things I never used to see. I cry more easily. Above all else, I try to connect with others in a way I never used to, because I can, and because I want to. And yes: I shot my second film (COMING SOON TO AN ILLEGAL DOWNLOAD SITE NEAR YOU), and yes: I also got a new job that offers us financial stability, and one that also happens to be a job I really wanted. It turns out my boss has a granddaughter who’s high-fiving the dog with sunglasses too, which was a hell of an ice breaker. Am I a famous filmmaker yet? Nope. Will I be, someday? We’ll see. I’m too busy living in the moment to stress the future. The passion is still there, but the context has changed, because as the wheel turns, things settle down in one respect, and ramp up in another. So yeah: They all lived happily ever after and all that.
I told you this was a true story, and it is, but I'll forgive you if you wonder at the details, and if doubts cause you to suspect embellishment. You're within your rights to do so. After all, it sort of stinks of Hallmark, doesn't it? The autistic child who doesn't speak, who’s diagnosed two days before Thanksgiving, and then opens his mouth and says the word his father thought he'd never hear, just in time to teach the true meaning of the holidays. Yeah, on second thought, feel free to doubt me: in fact, I sort of hope you do. But it's true. Every word of it. There are things in this world I might trivialize and other things I might sensationalize, always with an eye on crafting a Ripping Good Yarn; but Garyth isn't one of them.
What caused him to speak when he did? Why then, right after he’d been diagnosed? Was it simply a coincidence: was he destined to open his mouth and discover the B sound and begin checking off similar words? Would he have done this regardless? Or is it because somewhere, whether deep down or skimming the surface, he knew he’d been labeled and categorized, and stood up defiantly? “Might never talk”? Well, listen to this: BAW! BAH-BOOL! BEE-BEE! I don’t know. I probably never will. Someday, on a quiet evening after Thanksgiving, I’m planning to ask him. While I can be reasonably certain that he won’t remember the events of November 2014, there’s one thing I’m absolutely sure of: whatever his answer may be, he’ll say it. And I’ll hear it. And I’m so grateful for something so simple.
This isn’t about my son “beating” autism. He’s still hanging out with the dog who’s wearing sunglasses and the smiling flowers and the squirrels and rabbits high-fiving. That’s not going to change, nor would I have it. Garyth’s my best buddy because of who he is; and if offered a magic pill that would magically change him into a “typical” child, I’d reject it. His charming idiosyncrasies make up a greater whole. He’s a circle, not an incorrectly-drawn square. So no: this isn’t about fixing someone who doesn’t require it. That’s not why I wrote this.
This is a story about hope. About second chances. About becoming something greater. It’s about watching my son overcome obstacles and work every day toward reaching his fullest potential in life, whatever that may be. And it’s about feeling his gravitational pull and responding. Love is infectious. It’s a tank that never empties, no matter how much we give, so long as we’re willing to give it; and the more we give, the more we want to. My son taught me that, along with another equally important lesson: our dreams are possible. We just have to want them, and work for them. Every day. Too many people fail to realize that. I know I did, and if you'd told me this a year ago, I would have rolled my eyes. It took a two-year-old to make me see it. My dream is to fly, and since I’m not growing wings anytime soon, I have to find another way. That’s the challenge, and also the reward.
We have hard days. We have days that remind us our family has a challenge that will continue for the rest of our lives; but we also have the love to hold one another up. And that’s why I wrote this, and what I hope you take away. I said up front that I was going to try not to cry, but fuck it if I’m not losing my cool now, right at the very end. That Penguin of Madagascar is sitting beside me, and it all comes rolling back. And that’s okay. Because someday Garyth will read this, and he’ll know how much he gave me, and how much I love him, and how I can’t take anything in my life for granted. Not him; not his mother. He taught me the words I say to myself in the dark, when the light is gone and hope seems far off; he taught me what to say:
Ball. Bubble. Baby.
And then I can fly.

Thanksgiving 2014.



12 comments:

  1. POSTSCRIPT: Today is Thanksgiving 2015. When I went to get Garyth out of bed this morning, he smiled and said, "Happy Thanksgiving! You had a fun dream! Daddy was bouncing!" We're still working on pronouns, so "you" often means "me," and vice versa; but I can live with that. My son had a dream about his Daddy, and could tell me about it; and in that dream, I was bouncing. Like a ball.

    He's in the living room right now, role-playing with his toys. Giving them dialogue. Empathizing. He's never done that before. Laura just broke down crying in my arms.

    "Ball, Bubble, Baby," indeed.

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  2. Erik what a sensational story! Truly, I am sitting here with tears falling down MY face.

    There is NO love greater in this world then the love for our children and until one becomes a parent, there is simply no understanding it.

    As a parent of a very little child that had to suffer all types of medical testing that caused intense fear and pain, I can relate to your accounting of guilt. I was there once, I did that. I too felt it necessary, and sadly it was, but it is something that marks you and hurts you more then it hurts your child.

    My little story began with my second child, Carey, who was three weeks old when I got a call that changed our lives in a big way. Apparently the hospital had been trying to reach me since her birth (??????) but somehow had the wrong information which is why the call three weeks after her birth. The nurse I was speaking to, told me to STOP NURSING my daughter altogether and that I should call my baby's pediatrician immediately as my little daughter had tested positive for Phenylketonuria (PKU), a genetic metabolic disorder in which proteins become radical and invade the blood stream, killing brain cells and causing retardation. The Nurse said the baby needed to be seen immediately at Children's Hospital and that she could be retarded!!!!

    Oh you can just imagine that moment, here I was one second earlier just loving my little baby, holding her as she nursed and the next looking at her and wondering if she was retarded? Also I was questioning my fault in that. What did I do wrong?

    After speaking with the doctor and getting her in at Children's in DC, we did learn that she had a variant of PKU, Hyperphenylalanemia. She required special follow up for years and testing to check her developmental progress. She was identified as "learning disabled". We had to keep her on a special diet and watch her consumption of foods with proteins. She did well.

    Three years later, we had another child, a son. Our Genetic's doctor said we had a 25% chance of having our unborn son be born with the more classic PKU disorder. Sadly he was, and his diagnosis caused us and him some real trying, scary and sad struggles during those early developmental years, some of which he still faces today.

    Erik, t's all about the most intense LOVE there is! The love of a parent for their child.

    We thank you for capturing such an amazing journey and sharing it with all of us!

    Your son is absolutely blessed beyond words to have such a loving and wonderful Father (and Mother) as you (and Laura)! I'm confident your story touches ALL who are reading this and I'm pretty sure we are all crying, hurting for you, Laura and Garyth and then rejoicing, laughing and celebrating as we repeat "baw, bah-bool, bee bee".

    One last little note - My children are all grown these days. Despite all the negative things that we thought and were said to us about our daughter and son, as we dealt with them having PKU and the variant (Hyperphe), they both graduated from high school, went to college, earned degrees and got jobs. They are MARRIED, SUCCESSFUL YOUNG ADULTS! Carey is a Biologist and Researcher who studies diseases of the liver for a world-renowned doctor and Christo is a Restaurant Manager in Charleston, SC with a degree in computer science.

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    1. Thank you for sharing that, Connie. You fuel my hope, and strengthen my resolve.

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  3. Amazing, amazing story Erik. Thank you so much for sharing. I cried buckets for different reasons all through it. Brilliant retelling and an inspiring message. Thank you.

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    1. Your comment on CHUD was probably the best response I've read to this yet. Thank you.

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  4. Sir, that was great. Similar circumstances with my son and it does seem, for some kids "on the spectrum", it goes from talking is non-existent to soon speaking all the time. My son is 5yo and also as some trouble with pronouns, but I'll take it. Talking to him nowadays I find myself thinking of Yoda and it always brings me joy inside just to hear him speak.

    Your circumstance with your son going in for emergency medical procedures is almost exactly like what happened to my son. He was born one day, and a week later, was back in the hospital being pumped full of antibiotics for an unknown infection. To top it off, a month later, he was back again because it seems the initial bout of antibiotics wasn't strong enough and so he ended up spending 3 more weeks in the hospital with a constant infusion of drugs to be sure. He still has the vampire marks on his neck 5 years later from that hospital visit.

    Regardless, congrats on your son's improvement and best wishes to you and your wife in the ongoing struggles ahead.

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    1. I've appreciated your support and understanding during our past correspondence. I want to thank you again, and to let you know I'm always here to repay the favor in kind. Happy holidays to you and your family.

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  5. Few writings have impacted me as strongly as this beautiful recollection of painful and precious moments. I am sharing it with as many people as I think might gain from it and holding the image in my mind that anyone who needs to read it will find it. Thank you for the courage of sharing this beautiful message of hope, love and parenthood. Brian St. August

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  6. What an incredible story...and what a beautiful and amazing family the 3 of you are. Erik, you are such an extraordinarily powerful writer. As a first time mother to a 2 year old, the story itself would bring me to my knees anyway - but the way you took us through every thought and feeling with such vivid and heart wrenchingly authentic imagery and verbiage was just an emotional annihilation (in a good way - this is a story that MUST be shared for parents who are both going through similar situations and those who are not.) What an experience you and your family are having. I am inspired that you saw the gifts within the pain and that you were willing to share your miracles. Just awesome!

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  7. Thank you for sharing, Erik. I'm a slobbering mess now, but this actually helps me confront my demons. Best wishes and hugs to your family. Thank you. -(wd40)

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  8. I was reading this crying, tears rolling down my face..xoxo

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