2. Coming Out

NOTE: This is the second in a series. To read the previous part, click here.

I’m a lifelong collector of books, movies, comics, action figures, and all sorts of other things that got me routinely shoved into lockers as a kid. There was a time when wearing an Avengers t-shirt and PC gaming wasn’t cool, guys; you Millennials have it easy.

While collecting has understandably decreased throughout my adult life – mouths to feed, a mortgage to pay, etc. – you can still bet that if it has the Lord of the Rings or Star Wars logo on it, I have two copies: one for consumption, and one sitting in mint condition behind glass.

(Jesus, just writing that makes me want to punch myself in the face. Someone find me an empty locker, quick – I need to stuff myself inside.)

From a Nerd standpoint, the worst thing in the world is when your collectible item (particularly anything with a slipcase) is defaced with stickers: the ones that say FREE TARGET EXCLUSIVE or ULTRAVIOLET COPY INCLUDED, because 1) Ultraviolet sucks and requires me to log in to two different accounts that have somehow managed to store my digital copies under different handles that won’t marry together properly; and 2) because they’re ugly. Labels are ugly. They’re garish. They’re haphazardly slapped over cover art or key aspects of design. Trying to remove them makes the problem worse, as these applications tear easily; and even if you can get them off, there’s a gummy residue that never goes away and attracts lint and dust and other nasty crap.

Labels suck.

I resist defacing something I care about, and in the case of my son, I don’t have a mint condition, unopened copy. I have only one Garyth, and I have to handle him gently and with great care. But at some point, I knew I was going to have to be honest. I knew I was going to have to tattoo a word on his life that was never going to go away, and one that I was terrified would deface his beauty, and his potential. One that would distract. One that would threaten to define him to others, and potentially, to himself. Trying to remove it later on would only leave a gummy, sticky, nasty residue in its place. It would never, ever go away.

I didn’t know how to go through with it. I didn’t know if I could. But I had to. Sooner or later.

This is the story of how I applied a label to something beautiful. This is the story of where and how I chose to stick it on.

This is the story of how I told the world my child has autism.

I

The first time I told another person was about two weeks after the diagnosis – roughly the middle of December, 2014. I was at work. I was spending my lunch breaks hunched over carefully concealed books on Autism Spectrum Disorder, filling a notepad with my questions and concerns. I’d become distant during the preceding months as my fear for Garyth’s health intensified; and now I’d all but built a wall around myself. It wasn’t on purpose; it was just hard to have casual conversations. Sometimes it still is. Vantage point determines one’s reality in so many ways.

I was sitting alone, reading and writing, when a co-worker approached me. Reflex took over; the book was quickly concealed and my notes obscured. I probably looked scattered. I probably looked like I wasn’t sleeping. Both were true.

He asked how I was doing. If I was okay. He said I’d been different lately. And I was. But what was I supposed to say? Dude, you have no idea. You know my two year-old, Garyth? The one we hospitalized last summer for Kawasaki syndrome? I’ve been terrified all year that the drugs they gave him did something to his brain. He started walking late, and he never started talking. He’s different from all the other kids. He’s far away. Remote. So we started testing him a few months back, and we found out two days before Thanksgiving that he’s autistic, and needs to be enrolled in an early intervention program right away. And there I am, having to come to grips with that, when three days later, the day after Thanksgiving, he started talking. Like, literally right after I was confronted with the reality that he might never say a word. He said Ball and Bubble and Baby, and I lost it, man – I fucking broke down and cried like I've never cried before. And then, get this: the next day? He called me Da-da. I know you’re not married, and I know you’re still in your early twenties and practically still a kid yourself, so I don’t expect you to understand how that felt. I also don’t expect you to understand that I’ve spent every night of the past two weeks staring at the ceiling, obsessing over whether tomorrow’s going to be the day he suddenly stops. Even if he doesn’t, even if he keeps it up, I still don’t know what’s going to happen: I don’t know if he’ll be able to go to a normal school, or get a driver’s license, or get a job or live on his own. I’m so scared he’s not going to make friends. I’m so scared he’s going to be picked on. I’m so scared and I can’t lean on my wife too heavily and I have no one to talk to, no one to tell; and all I can see is his beautiful smile, and I know it’s my responsibility to make sure it never leaves his face. It’s my responsibility to help him reach his fullest potential and I’m so scared I’m not good enough to get him there.

I wanted to say that. I needed to say it to someone. Anyone. But I couldn’t, and yet I knew I couldn’t keep it a secret forever. Not only for Garyth, but for me. So in that moment, I decided to test drive my new Normal. I impulsively chose to own it, right then and there, before I lost my courage, or overthought it to the point where I paralyzed myself. I opened my mouth, and for the first time, I made it Real.

“My son was just diagnosed with autism,” I said. Short and simple, just like me.

And suddenly, I felt a thousand pounds lighter. The weight dissipated like steam. I was able to raise my head. I was able to look my co-worker in the eyes. I had just built a new bridge back to a life I thought was gone. Back to Before.

And my co-worker?

I’m not sure what response I expected from him, but the last thing, the very last thing, was for his face to screw itself up, scrunching at the nose, like he’d just smelled something awful. Or like he was watching me eat my own shit. Or like I’d just said something that made me naked and vulnerable to someone who had absolutely no frame of reference whatsoever.

“Damn, that sucks,” he said, his lips updrawn. “My friend’s kid had that. The way he acted, you could tell he was all fucked up in the head.”

All fucked up, he said.

All fucked up.

My beautiful son.

It was a long time before I talked about Garyth’s condition again.

II

We as human beings are the guardians of our own image. How we present ourselves is, barring contradictory behavior, how we’re perceived by those around us. I’ve had a number of gay friends during my life, a direct byproduct of time spent in theatre groups, working on film productions, and hating football; and I’ve seen many of these friends wrestle with the often unfortunate consequences of Coming Out. My clearest memory of the summer of 2001 was the night a friend cried on my couch, having just announced his homosexuality to his parents and receiving the ultimatum: Get straight, or get out. It took courage to do what he did, and years of preparation for that moment. He knew that once he told the world he was gay, he’d always be gay, and he’d forever experience both the good and bad that comes with such a declaration.

Making that statement -- not so much inhabiting it, but inhabiting it publicly -- is a choice. Wearing it and owning it is something one has to do in their own time, and in their own way. When a person is different, eventually they have to derive strength from that difference or else crumple beneath its profound weight. The truest and most liberating and painful way is to proclaim it from the heavens. My problem was that I was in a position wherein I had to make a similar choice: to make that public declaration, and to choose to make it for my son. What if he told me some day that it wasn’t my place to do so? What if he resented me for wearing blue on Autism Awareness day? What if he felt he could have gotten by under the radar and could have been accepted without dealing with the social stigma attached to a potentially concealed condition? I would always be the one who had caused him to be treated differently, to be beaten up, to be called Retard by his peers or anyone who felt like breaking a heart that would surely be broken repeatedly by cold, cruel hands throughout the rest of his sweet, gentle life. It wasn’t fair to him that I had to do this, and it wasn’t fair to me, either. I’m his father. I don’t want to hurt him, even if my designs are necessary. I love him. Do italics convey that more effectively…?

I don’t necessarily mean to compare the situation of Garyth’s autism with homosexuality beyond using it as a point of reference. It’s the only thing I find comparable, both in terms of Brand Recognition, and the view by some of some sort of unfortunate genetic mishap. A poor, crosswired Might-Have-Been. Yes, I realized that by telling the world he’d been diagnosed with a learning disability, we’d discover resources paramount to Garyth’s development. We’d also have to learn to accept that our son would be judged, sometimes before he was met; other times, after. By the same token, we couldn’t not say anything, as the older he became, the more atypical his behavior seemed: the flapping hands, the spinning in circles, the refusal to make eye contact. What sounded to me like the glorious music of a voice discovered was, to others, the rough, unlovely sound of a potential speech impediment. I saw a miracle unfolding before my eyes, the petals opening; others might see only a father clinging to driftwood.

We knew there’d come a day when we reached that fork in the road, where we had to take a very public walk down a very private avenue in our lives. We’d have to send forth the bannermen, and the trumpeters would let loose a blast as the heralds announced the coming of Lord Garyth the Small, newest in a line of exiled nobility, banished from their homeland: the realm of Normal; and we -- his mother and me -- were his cupbearers. All hail the Never Was.

III

The month following the diagnosis is a series of fragments. I remember it in snatches, like photographs: the time a co-worker said he’d seen me walking down the road from our job site, and how he wasn’t sure whether the sun was in my eyes or not, because it looked like I was crying (he was right); the times I’d call Laura from work to ask her whether the autism was my fault for any number of reasons both credible and ridiculous; the time my friend Robin came over to the house to take a series of portraits of Garyth for Laura’s Christmas gift -- a permanent record of this momentous period in his life that covers our wall in seven pieces. I remember regularly breaking down at three in the morning, getting out of bed to sob uncontrollably in the bathroom so Laura wouldn’t hear me. I remember sitting in Garyth’s room while the house was still quiet and watching him sleep until the sun came up. I’d wonder what was happening in his mind when he dreamed, and how he perceived the world. I’d wonder if he’d ever have a son of his own, or whether my line ended here in this bedroom in a small house in Parkville. I didn’t see him as less. I saw him now as something more. But there are so many working parts in the machinery that constantly break down. We men and women of the world: we break down so often. All it takes is one bad spark plug to stop a car, or to prevent someone’s success when he’s dependent on the help and resources he needs.

I can say these things now because I’m past that initial stage, if ever one can move beyond worrying for their child; but at the time, I was bottling my fear. I was constantly pacing, looking for a fight, for a release. The pressure would build and then explode without warning. One night I snapped at Laura after she laughingly commented that Garyth had what she referred to as an “accent” – a syrupy gruffness when he spoke what few words he was able – and then imitated it for me. Moah. She was referring to the way he said more, a word I’d worked very hard to teach him during the nightly dinners I fed him while Mommy was at work and it was just the two of us, alone in the house, building his vocabulary. More, I’d taught him to say when he wanted another bite of baked beans or macaroni and cheese instead of grunting and flapping his hand in my general direction; and I’d been so proud of him, clapping, watching his eyes sparkle every time he said it, my own vision becoming misty over something he’d been incapable of doing mere weeks ago; and when she said that, when she laughed at his “accent” and imitated his voice, making her own clear diction rough and simple, moah, I heard the future echo of playground bullies mingling with past echoes of my own voice, telling jokes about short busses and retards who couldn’t clap their hands without missing; and I lashed out at her, telling her to never make fun of my son’s voice, to never do that again, and then seeing her recoil, seeing her flinch, her eyes filling suddenly with tears, her face horror-stricken as she asked how I could ever think she was making fun of him. She found it endearing, and was laughing from happiness. I shut down that happiness in an unthinking instant. That’s what happens in a pressure cooker.

There was no one to talk to. Laura’s mother, Carol, was the only person other than Robin who knew; my parents were not, and are not, in the picture. Really, though, who could we confide in? Who could understand? Most of our friends were unmarried. Those with kids lacked any appropriate frame of reference, taking their offspring camping, on vacations, dressing them in nauseatingly scaled-down designer clothes that matched their own, posting pictures of their carefree, blissful parenting adventures on Facebook. Here’s little Timmy in his five hundred-dollar stroller my parents paid for! #IgnoranceIsBliss

Nope. No one could understand. No one could relate. No one knew what it was like for us, visiting the early intervention facility that very first time to meet the Special Ed teachers whom Infants & Toddlers had assigned to Garyth’s case. Everyone there was wonderful, and the program was exceptional, but beneath our dumb smiles and racing minds, there was the understanding that we were bringing our son, only four months out from his second birthday, to a place where he’d be sharing classrooms and lunch tables with children heartbreakingly deformed, filled with tubes, some unable to do more than drag their bodies across the floor with their arms, their eyes cloudy and rolling in opposing directions. There were no five hundred-dollar strollers here, no toddler-sized Timberland boots. This was a place built out of Making The Most of A Bad Situation. That’s how I saw it then. He’d been placed here almost immediately after being diagnosed, and they wanted him to start as soon as possible. The Monday before Christmas? we asked. It’s only a two-and-a-half day week. How about we just bring him in the following Monday? No, they told us; they wanted to start him right away. There was something indescribably ominous about that statement.

When we brought him in that first Monday, and when we approached the security guard to sign in, Garyth looked at us in terror and began wailing, clinging to Laura’s shirt. We had to pull him off and send him away with his teacher. He was still a fucking baby, guys; he was just a baby. We were locking him in there and abandoning him with things and people that were going to scare him, give him nightmares: these patchwork children put together backwards and upside down by drunken hands in a dark patch of midnight where there’s no God, no kindness, no sense of justice; only empty promises, worthless belief systems, and the former dreams of parents lying shattered on a pebbled beach stained by cosmic pollution. They took him down the hall and closed the door, sealing him in and us out. I imagined kennels and wailing dogs and felt my knees buckle. I had betrayed him. I had promised him a life I wasn’t genetically able to give him. I had failed him and his mother both.

We were taken to a small office and sat down on a couch. There were framed diplomas and family photos surrounded by potted plants. The shades were drawn and the light was dim. I suppose that cutting the harsh light of day was intended to be therapeutic; I saw only a black metaphor. The administrator of the facility asked us if we wanted coffee. I said No thanks, but I’ll take a bourbon. She laughed. Laura tittered. I was only half-joking.

She asked how we were doing, and I immediately launched into the account I wrote previously: of Garyth’s diagnosis the month before, and his immediate and unexpected development of vocabulary. I wanted to tell her so she knew he didn’t belong here, because my hope was so fragile and needed reinforcement. She didn’t listen. She cut me off. That wasn’t what she was asking.

“How are you doing?” she asked again, this time with the emphasis in place.

Laura and I looked at one another. We hadn’t stopped to ask that, neither of one another, nor of ourselves. We’d been too busy: first with getting Garyth evaluated, and then trying to come to grips with what we were told; then, suddenly, trying to come to grips with his behavioral change; then enrolling him in school, getting his medical records and other necessities, and all that went with beginning this new chapter in our lives. There’d been a lot going on, to put it mildly.

We didn’t mention that I’d been laid off two weeks prior.

IV

At the time, I was a contract photographer. I was in the process of putting together my second feature film, one that, like the last, would be financed entirely out of my own pocket, as well as the pockets of my production partners. Everyone was working for a piece of the pie, once it had been baked and served. The hope was that, after my previous success (at least insofar as regional indies go), I’d receive greater attention now that I’d established an admittedly small audience. It wasn’t just a question of wanting to see my headshot in The Baltimore Sun again: it was an investment in the future. Hopefully, if I knocked, the right person would, someday, answer.

But you gotta keep the lights on. Gotta keep the vehicle on the road. Food in the cupboard. Shoes on the feet. Apps on the iPhone. You need income. One can only be a starving artist if it means starving alone; wives and kids don’t tend to come along for the ride. A job is necessary, and chasing dreams has to be scheduled during evenings and weekends. When you’re twenty, you think you’re invincible – you have all the time in the world. No commitments. When you’re forty, reality has long since set in. You either feel you’re making strides in your entrepreneurial goals, or you begin to feel like the old guy everyone’s laughing at behind his back. Look, there goes the award-winning independent filmmaker in his Hyundai Accent. To this day, there are certain participants from my last film who, for reasons I don’t understand, spread the rumor that I hoarded profits rather than shared them. I always laugh when I hear that. It’s a laugh that sounds the way chewed asprin tastes. I’ve never seen a dime come in on that film, but I’ve seen many dimes go out. Don’t think it didn’t cross my mind that I should have been learning computer programming instead of investing my family’s future in an arthouse feature.

By day I took pictures and shot video for a client who had hired me as an “on call” photographer, but scheduled me full-time for several years. I was considered essential personnel, until the week before Christmas when, suddenly, I wasn’t. And just like that, I was out. Well, you knew it was an on-call position, Erik. We’ll let you know when we have some work for you. Merry Christmas.

You have to consider all this when you think of where we were at that time as a family. There was no stable ground beneath our feet. Our child’s future was uncertain, and the phone would begin to ring if we didn't figure something out, fast. A multitude of Ray Liottas. Your kid’s retarded and you're out of work? Fuck you, pay me. It was like being washed overboard during a storm, and watching the boat sail into the distance as you’re desperately trying to tread water, knowing that sooner or later, there’d be nothing left. Inevitably, you’d get tired. Inevitably, you’d drown.

Laura was working evenings. Her income was always intended to supplement mine, to help pay down debts, and maybe buy a new Hyundai Accent to replace the old one that kept breaking down, keeping the Meineke on Harford Road in business. Now her meager earnings were our sole source of income. I was sending out dozens of resumes a day and staring at a phone that refused to ring. Pride disappeared quickly, and soon I wasn’t just applying for film-related work. I was either over or underqualified. The vultures began to circle. We were alone.

So I took advantage of the forced time off and shot my new film. My collaborators had no idea (or at least very little) that any of this was going on. I put on a brave face and tried to muscle through it all despite the fact that I could barely put gas in my tank and couldn’t afford lunch. I annoyed people because I was fragile. I thought I was being less argumentative and opinionated. I was trying to have the fun that I desperately needed, the release. Making The Most of A Bad Situation. Some of them thought I was weak and indecisive. Maybe I was. But I couldn’t tell them what we were going through. Why would they care, anyway…? We had a job to do.

I became seriously ill in February and had to be taken to the hospital during a blizzard that shut down the highways. I couldn’t hold down food or water and was shitting myself. Surgery followed. We couldn’t afford it. Laura was wearing her pajamas all day, sitting in bed and trying to ignore the mailbox. I was taking any and every video gig that came out of the sewage pipe. There was literally nothing to look forward to, as all paths led to despair.

V

But Garyth was changing before our eyes. He was talking. He was counting. He was learning his shapes and colors. He could say the alphabet, and could place the appropriate letters in the appropriate place on a Melissa & Doug activity board. I was shooting video every day, documenting his progress. When I watch those clips now, today, I hear that Laura was right -- he did kind of have an accent: he sounded vaguely eastern European, like a miniature Count Dracula. Ees verra gud meelk, Deddy. Moahr, peease. It stands out to me now, as his voice becomes stronger and deeper, and as I watch him stop himself mid-sentence to correct the pronunciation of a word or a sound the way his speech therapist (“Miss O.”) has taught him. At the time, though, all I could hear was music: the sound of my child calling me Daddy. So we read books while Mommy was at work, me beginning the rhyming sentences and Garyth finishing them. I taught him to flick light switches with uncoordinated fingers that grew stronger with practice and occupational therapy. I taught him to turn doorknobs. I took him for walks around the block, and soon neighbors I’d never seen were recognizing us, saying hello to Garyth. I got him to begin waving back at them. I began showing him Little Baby Bum, a series of educational song-based cartoons, that he memorized and responded to, calling out his observations as he ate his Peanbudder Samper. I’d lay in bed with him and turn the camera phone to Selfie Mode, letting him watch what Laura called The Little Boy in the Mirror, staring back. That’s how I taught him his name, and that he belonged to it. At bedtime he’d sit in my lap and put his ear to my chest. ABCs, Daddy, he’d say. I’d sing them, softly. Again, Daddy. More ABCs. I’d sing them again, remembering the first time he ever said More and the first time he ever said ABCs and the first time he ever said Daddy on that cold November morning so long ago. I still do that when he talks: I see milestones when I hear phrases, and I can remember the overlapping, patchwork quilt of events surrounding so many of them. And so I gave him anything he asked for, within reason, just so long as he used words to make the request. Just so long as he spoke. And he did. I’d go from room to room, turning lights and ceiling fans on and off, back and forth, over and over, as long as he asked. He was training me to respond, not because he told me to, but because I wanted him to tell me to.

Quite apart from the freedom to focus on my new film uninterrupted, the one benefit to unemployment was the ability to drive Garyth to and from school each day, listening to his Bananas in Pyjamas Singing Time CD in the car. I met with his teachers and therapists three days a week. We talked. They’d tell me how he was doing at school and what they were working on; I’d take him home and continue to reinforce the lessons. Each day, he came home with a progress report. There was an entire column dedicated simply to the words he’d used. As the days became weeks and the weeks became months, those single words became fragments, and then full sentences. He brought home arts and crafts projects which began to cover our refrigerator. When I’d come to pick him up, I’d sneak in so I could observe him. He’d be sitting at his little table, eating a snack beside a deformed child whose face was a random assortment of parts without reason. Garyth didn’t notice. School buddies, he’d tell me later. Sometimes I thought of these boys and girls and their parents and began crying. Typically, sometimes was often. But Garyth didn’t notice the differences between himself and his buddies with whom he spent his day. It didn’t register. Soon I was crying because I had noticed, and because of what that said about me as person. So I began talking to them. Saying hello. Some of them never answered me with words. Some of them answered in their own unique ways. Some of them had voices, like the tiny, underdeveloped boy tethered to a purse full of medicine that entered his bloodstream via tubes under his shirt. He hugged me every time he saw me. Soon, with prompting, Garyth was hugging him, too. The first time I saw my child show physical affection to a peer was a moment of beauty I can’t describe. Sometimes his buddies would cry as painful physical therapies were performed, or life-sustaining medication was given. Garyth would want to sit near them, or place his hand compassionately upon their heads. I couldn’t believe I’d ever thought that surrounding him with children who were so different would be harmful to his nature; I couldn’t believe what a fucking hypocrite that made me. He was learning empathy. You don’t know what you’ve got till it’s gone, goes the power balled; but I think the truth is: You don’t know what you’ve got till you resign yourself to never having it in the first place.

So many changes. Songs learned. Daily routines established. He even began to lose his need for an attachment object. Previously, he’d depended on small red objects – first a triangle, then later an E from an alphabet set – that he insisted on carrying everywhere. Three times “Red E” was lost, and three times Laura had to buy a replacement set or else Garyth would melt down in a panic. His teachers began to ween him, forbidding us to allow him to bring anything to school. Soon, Red E was forgotten.

I managed to save the last one before it too disappeared forever; it hangs over my desk at work. I hold it sometimes, and remember that period in my life, and in Garyth’s. I think of those School Buddies whose names I learned and whose lives I became invested in. I wonder where they are sometimes. I wonder if they still remember the Dad who smiled and said hello with greater frequency as the year went on. Because he remembers them.

VI

Right outside of Baltimore, there’s a restaurant called Red Brick Station. It’s a brew pub. I’ve been going there since 1997 when it first opened on the newly-built Avenue in Whitemarsh. You could have a mug and literally watch the brew masters at work through large windows that offered a glimpse of the giant vats within.

After the first visit, it became my place. I held all of my film production meetings there, hung out with my friends there, even got roaringly drunk there after I asked Laura’s father for his permission to marry her and was told no. Sometimes, when the bottom of the mug becomes visible, I wonder whether he was right.

For nearly two decades now, it’s been my regular haunt. Swing through the pub sometime and you might see me; if not, I might be out on the patio. I drink more responsibly these days now that I have a family to go home to, but yeah: I’m often there.

Because of my love for the place, and because Laura loves it too, it only makes sense that Garyth was exposed to Red Brick Station at a very early age. It’s a family restaurant, so there’s nothing particularly lascivious or eyebrow-raising about that fact. It’s just where we went. It’s What The Myers Family Did.

Soon Garyth began asking us to take him there. Red! he’d request. Right now, we couldn't afford to go out. We didn't have the money to spend. At the same time, though, I feel any family who's ever gone through a particularly difficult patch in their lives will understand the concept of emotional health; by this, I mean that an hour spent out of the house, enjoying ourselves and blowing off steam, was worth more than few bucks we were spending. We couldn't afford to eat, and so we just dropped by the pub for drinks. Laura and I had a beer, and Garyth had a lemonade. Because he was still small and we wanted to limit his sugar intake, lemonades were restricted to Red Brick Station. It became something he began to associate specifically with that place, making it just as much a trip to look forward to for him as it was for Mommy and Daddy. Beer, he called it. We'd walk through the front door, and Garyth would happily shout BEEEEEER! at the top of his lungs, turning every head. I didn't need CPS showing up on my front door, so we began working on calling it lemonade.

We made it a regularly-scheduled Sunday morning trip, arriving at eleven when the doors opened. It was quieter then, and Garyth was typically better-behaved at that time than he was later in the day or in the evening. Though he was, by and large, low maintenance, he acted out sometimes, as all toddlers do, but for reasons we could never quite define and therefore not always fix for him. He'd become overstimulated. We knew he was incredibly sensitive to the volume of music, the chaos of crowds, and the brightness of lights, and Red Brick on a Sunday morning was calm in regards to these myriad aspects; but as the winter became spring and the spring became summer, we found him becoming more and more agitated for reasons we couldn't identify. He'd stare at the ceilings sometimes and loudly hum, and wouldn't -- or couldn't -- stop. Despite the fact that he was talking, his ability to communicate complex ideas was limited, so we couldn’t understand what was setting him off. On more than one occasion I had to take him from his high chair when he'd begin to suddenly panic and scream. We’d go outside, where he'd point back at the restaurant, sobbing. Want Red, he'd say through the tears. He wanted to be there, inside. He wanted to sit with us and relax for that one hour a week. Sometimes I'd take him back in and he'd be calm; other times, he went right back into his reactionary behavior, causing us to carry a screaming, kicking child to the car. It was exhausting. I just wanted my son to be happy. I just wanted us all to be happy. I needed it.

I used to go to Red Brick at the drop of a hat, and therefore knew most of the faces well enough to say hello: it’s the sort of establishment where the core staff sticks around. Now that we were going on a regular day at a regular time, we tended to have the same server, who always made a point of giving Garyth extra attention. We taught him to say her name, which came out as Madwin instead of Madelyne, but it was a start. She never gave us funny looks when she'd talk to Garyth and he wouldn't answer, instead looking away from her and flapping one hand fast enough that I worried he'd sprain it; she never looked irritated if he began suddenly panicking and had to be removed from the restaurant; she never rolled her eyes or treated us as an annoyance because we kept our check average low.

When we'd leave, we'd stop at the fountain in the courtyard outside. I always had a handful of pennies. I'd pick Garyth up and place him on the lip of the pool, holding him to my chest with one arm, handing him pennies with the other. For Mommy, he'd say, his aim and throw becoming better, stronger. For Daddy. For Grandma. Soon, he was adding For Madwin. For Red Brick.

The seasons changed, and the world became warm, and I was asked to return to work.

VII

And as the sun rose, bringing new life and color, our world too began to bloom. The bank account began to slowly fill. The bills were paid.

My film was coming along nicely: by early August, we'd be checking the gate and preparing for the lengthy post-production process head. Then, on August 16th, Garyth would turn three. Upon that day, he'd officially age out of his early intervention program, and we'd have to secure an Individualized Education Program (IEP) through Baltimore City. We'd been warned that it wasn't always easy. Often, the school board will decline services needed.

Two weeks later, the lengthy job I was just now returning to would finally be wrapping up for good, meaning I needed to find steady employment soon, once and for all: the likelihood there’d be further work for me there at my current job was unlikely, and for many different reasons.

August loomed before us, still several months out, but tall and oppressive like a range of winter mountains.

VIII

Garyth's progress at school continued. The feedback from his teachers was positive; his daily report cards showed longer lists of sentences used and therapeutic sessions successfully completed. Yet there was a sudden and unexpected melancholy that fell over him in the spring, and I was told he wasn't talking or participating in Circle Time the way he had been. He was staring wistfully at a photo of a classmate named Nathaniel – one of a series of headshots taken of each student on their first day, printed and hung over their respective cubby – and Garyth was coming back to stare at it repeatedly during the course of the week following Nathaniel’s third birthday and subsequent graduation. Fan-yool, Garyth would say quietly. I asked his teacher if I could write an email that she'd forward along to the parents. I wrote that I knew I'd only met them in passing, dropping off or picking up our children throughout the week; but my son missed theirs, and it was the first time he'd shown any emotional attachment to a peer. This was precious, and couldn't be allowed to fade. I wanted to get our boys together to play. The email was forwarded, and Nathaniel's father -- an African doctor working at University Of Maryland as an infectious disease researcher -- responded immediately. Nathaniel was talking about Garyth, too. Yes, their relationship was important, and needed to continue. When could we get them together?

So as the fires and violence that rocked Baltimore in the aftermath of Freddie Gray's death shut our city down and turned its people against one another, I received a ding on my iPhone one Wednesday in May. It was a photograph. Laura had sent it to me. It showed my son, so lilly-white he practically glowed, hugging his first and best friend Nathaniel, the latter’s color as dark as Garyth's was light. Neither one knew what was happening mere miles away. Neither one cared. Neither one knew how to put their arms comfortably around the other, to hold another person close; but they were trying, and they were learning.

IX

May became June; June became July. August was coming. So many things would change.

And still, we hadn't told anyone.

X

The date for the IEP meeting -- August 14th, 2015 -- was set. It glowered at us from the kitchen calendar, a deadly menace even in my wife's gentle script. Unmarked but following right behind was the final day of my current job. The blocked date seemed a shade whiter, brighter, louder, angrier than the others. I quietly sent out more resumes. August arrived, ready or not.

Garyth was evaluated by a representative of Baltimore City. She came to our home to run him through a series of tests. Despite the lengthy file established during the past eight months he'd been in the early intervention program, this was a now a matter for the public school system; they were here to start fresh and determine his needs. All previous documentation was of no concern. I kept busy at work that day, trying to distract myself from the situation in progress. I had chosen not to stay home, worried that my presence would be a distraction for Garyth. I wanted his behavior to properly reflect who and where he was in life. Much like the day of his initial diagnosis two days before Thanksgiving, I was beginning to panic when I hadn't heard from my wife. When Laura called, I nearly jumped out of my skin.

Apparently, he'd performed as we’d expected. The things he could do, he did; the things he couldn't, he tried, and had difficulty accomplishing. A report would be forthcoming, and it would form the basis of the school board's decision. So we waited. We waited, and we tried to distract ourselves. I kept filming; I kept working; I kept spending all my free time with Garyth, reading him The Bike Lesson, and making up silly songs on the child-sized keyboard his grandmother had given him. He'd make me play them over and over again. We'd sing potty training songs, and we'd take walks and sing about things we saw: the number of brown houses, and the number of blue and white. He held my hand without protest now, clutching my index finger, no longer trying to pull away. We'd walk past the residence with the ceiling fans on the front porch and he'd begin flapping his hand -- a thing he tended to do often at Red Brick -- and I'd ask him who he was waving to. He didn't say, telling me only that the house had Outside Fan. Neighbors continued to say hi, and Garyth continued to wave when prompted. I felt like everyone knew he was different. They were probably thinking something was wrong with him. All fucked up in the head, maybe.

My film wrapped. We had an impromptu gathering at Red Brick Station and sat on the patio, spread across several tables. My co-producer's wife, Carla, had come out to join us and brought her two children. She talked to Garyth. She tried to engaged him. She's a teacher, and I knew she knew, and I knew she knew that I knew she knew. I wanted her to say something, because she was different; she’d be on my side because she’d understand. She wouldn’t judge him. I wanted her to say something so I could finally get the words out that were ballooning in my chest and making it so hard to breathe when we’d take him places and people would see that he wasn’t acting like the other little boys. But she didn't say anything. So neither did I. Instead, we let the kids watch videos on an iPhone together, and we taught Garyth to say matador.

Garyth's time was coming to an end at school. What would happen next was dependent entirely upon the IEP meeting, which was dependent entirely upon the results of this latest evaluation. A caseworker from Infants & Toddlers would be attending the meeting with us, and we were encouraged to bring an advocate when we didn't feel emotionally strong enough to fight if and when we were denied services that we felt he needed. I declined. I'd handle it myself, I said. Have you told your family yet? I was asked. Your friends? Your community? It wasn't the first time this had come up. I responded that I hadn't. You'll need to, they said. At some point, you'll need to. For him, and for you.

And when the letter arrived from the public school system, Laura tore into it, pouring over the words; the conclusions contained within announcing themselves like small, dark shadows on a CAT scan that began to grow with each subsequent sentence. Our son, it seems, was progressing too quickly. Our son would most likely be denied school services. Our son would be untethered and set adrift, his progress no longer of anyone's daily concern, and the methods that had brought him so far during the past year would be only a memory. No more speech therapy to help him speak more clearly. No more occupational therapy to help him learn to put on his own shoes and use a zipper. He'd be thrown into the rush and whirl of the public school system, a blur in a crowd full of children who knew how to use the potty, who could explain what hurt and why they were crying, who would quickly learn to read and hold a crayon and take off their own clothes and make friends and instinctively understood how to push a toy car correctly. Laura was pacing the room, asking how the evaluator could have decided this when the things she wrote were complete fallacies and didn't accurately represent how he'd acted during their session. I tried to swallow the fear in my throat, so bulbous and thick and by now so fucking, unfairly familiar, and I promised her that we wouldn't walk out of that IEP meeting without getting what we wanted. I swore it to her. I swore it to her that moment, and every day that followed. Sometimes I said it, other times I sent it in emails, or text messages, or as pure emotion I projected to the winds, sending them spinning and wheeling toward our home in Parkville, a place on the map now largely forgotten by friends who sensed the shifts in my behavior, and those who felt that something was very wrong beneath our roof. I said it and I tried to sound bold and she nodded, and I could see in her eyes that I might as well have promised I was going to win the lottery tomorrow. Laura is many things, but confrontational isn’t one of them; I was always the one who handled the awkward conversations on behalf of my wife. I thought she needed me to stand up for us, and so I’d have to. Who else was there?

When we arrived at the meeting, our caseworker was already waiting. Garyth was with us, holding Mommy’s hand. Laura was fidgety; I was pretending not to be. This was in no way alleviated by the fact that our caseworker had no sooner said hello then she promised she'd refer us to a good lawyer with a strong history of backing children in need of special services.

So when we stepped inside to set ourselves at that long, Last Supper table, with the row of school officials on one side and the three of us, badly outnumbered, on the other, I skipped right to the point and said I wanted to contest the results of their report; but before I'd gotten more than three words out, Laura had all but pushed me aside and took the reins. Momma Bear’s claws came out when her cub was in danger. She laid out her argument. She advocated for our son. Apparently I wasn’t the only parent changing.

We won. We went to Red Brick afterward and drank beer on the patio, smiling and laughing and proud of ourselves, and one another. Garyth would begin school in two short weeks, joining an autism-specific program in a public school only a few miles away. Nathaniel would be his classmate. They’d be riding the bus together like Big Boys. So we drank beer and lemonade together and celebrated, and I told them over and over how proud I was of them both. That was one year ago today as I write this.

And when we picked Garyth up from school on his last day, we had to say good-bye. To teachers. To therapists. To those children I still think about. School buddies. I kept saying Thank you and it sounded hollow in my ears. It wasn’t speaking the volumes filling the library of my heart. I kept saying it, hoping the next time would convey how grateful I was. It never did. But I said it anyway, walking from room to room, finding anyone and everyone who had touched my son’s life. They’d made him a banner with his headshot, taken on his first day back in December: a boy who was scared and confused, smiling in spite of himself at whatever funny face was being made off-camera, the expression like sun peeking through the clouds after a storm. Surrounding the portrait were photos taken throughout the year, showing things as mundane and monumental as my son tolerating a pair of sunglasses for the first time; and stamped across the paper were the handprints of his classmates. WE WILL MISS YOU, the banner said. I barely made it to the car.

XI

During all of this I got a job interview. It was a full-time position. Instead of taking pictures, I’d be doing what I’m doing right this moment: writing. I'd no longer be living week-to-week; I'd have sick days and holidays and benefits. It was a pay cut, but there'd be stability; and the job would begin immediately after my current contract ended. The timing couldn't be more perfect -- if I believed in a higher power, I’d say it had been designed. However, there were some skills I lacked that other applicants possessed, and I'd have to really sell myself during the interview. I'd have to fight for it.

Ball. Bubble. Baby.

I collected six letters of recommendation and went in for the interview.

XII

So where’s this all going?

Some of you are probably growing impatient with this narrative (assuming you’re still reading it). You’re wondering whether this rambling mess is coming to any sort of a point. Consider me grateful if you’ve gotten this far. It took me a long time to be able to talk, or write, with such candor. It’s taken a long time to be so honest. So thank you for reading it all.

Now that you know all that, now that you know everything that happened before, let me tell you about how we finally Came Out.

XIII

Garyth’s birthday was on Sunday, August 16th. He had just finished school and had the next two weeks off before beginning his new one; the IEP meeting was now officially behind us. I was stewing, waiting to hear whether I’d gotten the job. If not, things were going to become very hard again, very soon: we’d made up lost ground, but not enough to prevent the floor from dropping out from under us much more dramatically next time.

Laura wanted to have a party. It was Garyth’s third birthday, and we’d had that gathering at our house the previous year, the one that made me see, once and for all, that our child was different from his playdate peers; she wanted this one to involve his friends, his School Buddies. The invitations went unanswered. Apart from Nathaniel, we didn’t know the parents of his classmates, relying on their decision to call or email the contact info left in each child’s school cubby on Garyth’s last day. Former playdaters were all but off the grid. Our boy had taken such a long and profound journey since that last birthday, and now, here we were, without friends to celebrate it. No friends for Garyth, and frankly, no real friends for us, either. No one had really been around to see the emotional fallout from the IEDs buried beneath our daily road; no one could really understand the soap opera, or wanted to step in our mess. So I tried to wave it off. He’s only three, I argued; any party would be more for us than him. And yet I wanted it as much as my wife did.

So I took Garyth for our evening walk, and I asked him, point blank: What do you want to do on your birthday, buddy?; and he answered, without giving it any thought: Go to Red Brick Station, Daddy. Sit outside and have beer and fries! Of course that’s what he wanted. It’s what he always wanted.

And then he said what proved one of the most important things he’s ever said in his young life. He said: But no fans, please. No fans.

No fans. We had only just recently begun to realize the source of Garyth’s unexpected panic attacks as the weather became warm, then warmer, then a blazing Maryland August: he was reacting to ceiling fans. I’d asked him once why he didn’t like them, and he’d given an answer in the form of a wince-inducing, high-pitched drone. It was a sound he’d made many times before he’d begin to mysteriously melt down, as if the sound, which my normal ears couldn’t hear, assumed control of his faculties. He was waking us in the night, crying, sobbing inconsolably in his mother’s arms over some nightmare. No fans, Momma! No fans! So now, telling me he wanted to go to Red Brick Station and sit outside, with the fans turned off during the height of summer, caused my stomach to clench. This was what he wanted. Laura was depressed because she couldn’t give her son a party, and all the kid wanted was the same thing he got every Sunday: a trip to his favorite place. He just wanted to love it for what it was instead of wanting it and having it ruined for him, over and over. To think we’d been taking him there all that time and inducing stress broke my heart. But it was literally the middle of a heat wave reaching dangerous temperatures, and there was no way the fans wouldn’t be on. No way in hell, even at eleven in the morning. And there’s no way in hell a business would risk discomfort to paying customers because of one little boy’s bizarre request. You’d have to be all fucked up in the head to expect that.

So I did what any sensible father would do: I promised him the improbable.

We’ll go to Red Brick, Garyth, I said. We’ll sit on the patio.

And no fans?

No fans.

XIV

So on Sunday, August 16th, the sun rose, and the earth baked beneath it. We went to a nearby park. Nathaniel joined us; Garyth’s second cousin William was there, too. Apart from Laura’s mother Carol, we hadn’t told anyone in the family, but seeing the two schoolmates playing together on the jungle gym, I could tell our relations were putting the pieces together. I wanted to say something to kill this awkward, horrible strangeness that emerged whenever someone watched my boy, so normal one moment, so idiosyncratic in the next, and the words kept coming into my mouth and dying there, leaving a sickening taste in my mouth that it seemed only liquor could cleanse. It was a quick fix and fleeting, but it was seemingly all I had.

And when noon had come and faces were flushed and sunburns appearing, we said good-bye and packed Garyth in his car seat. We drove to Red Brick Station. My heart was pounding. It was my son’s birthday. The year had been so hard. Everything, always and forever, was so fucking hard. I wanted this for him: a good day. A happy day. I wanted him to smile. I wanted to give my son the world, and right now that meant Red Brick Station. Are you a parent, dear Reader? Do you understand what I’m trying to say right now? How something so simple becomes so important, the delicate balance of your family’s happiness at stake over something so small, so seemingly insignificant…?

So I drove us there. I pulled into the parking lot. We slowed in front of the restaurant.

And from the back seat: The FANS…! The FANS are OFF!

He was pointing, my little boy with his London t-shirt and mop of red-golden hair flapping as he bounced in excitement. Laura let out a little cry of happiness beside me, and I gripped the wheel as the tension rolled from me. I could breathe. It was going to be all right.

We walked in, Garyth practically pulling Mommy along. There, sure enough, was the patio, and there, sure enough, was a row of ceiling fans, all of which were off. Garyth strode inside, repeating over and over that The FANS are OFF, the FANS are OFF, leading us through the pub and outside. He picked a table. I put him in his high chair. We sat down. Mommy and Daddy laughed and Garyth laughed and we all laughed harder for it.

And then his face fell. His eyes widened. He stared at the ceiling.

The fans were turning on.

“Oh no,” Laura said, her voice tiny and remote.

I was on my feet in a moment. I ran to the door. I could hear my son beginning to cry behind me. A hostess was on the other side of the glass, presumably having just activated the fans from the kitchen and looking out now to ensure they were working. I pounced on her, and I clearly remember seeing my reflection in the door and how crazy and scared and tired I looked.

“Please,” I said, nearly falling on her. “My son is autistic. The owner said he’d turn off the fans.”

And just like that, I had said it.

I had said it.

I’m not sure what I expected to happen – maybe she’d say my son was all fucked up in the head. But she didn’t. Her eyes went wide. “We thought you weren’t coming!” she exclaimed, and she was right – we were late. We’d stayed at the playground longer than expected. In a flash, she turned around, dashed back inside, and a moment later the fans began to slow, slow, slow, and stop.

I came back. I sat down. I looked at Garyth. I was soaked in sweat. I was breathing heavily. But he was beaming, watching the fans cease their movement like one watching the moon rise and basking in it. There was wonder in his face, and in his voice. He saw past us all. They’re stopping, he said quietly.

Yes, I said, my voice thick. They’re stopping just for you.

XV

What had happened was this: I had written the owner, Billy Blocher, a Facebook message. I’d asked, privately and off the record, for this gift on Garyth’s birthday; and yes, I’d told him my son was autistic. I had been laboring to find a way to talk about it before, but I hadn’t hesitated to reveal it in an instant when it meant the difference between his birthday being special or ruined. Thus, Billy told his staff, and alerted them to make sure the fans were off when we arrived. That meant most of the usual gang on our regular day now knew. To this small but important part of our universe, the secret was out.

Our server was Angie. She took extra care of us. She brought Garyth a cake and we sang to him. Before we left, she stopped me, her eyes filled with tears, and said: You guys are so amazing. I hope you know that. I had no idea what she meant. I just said Thank you.

XVI

And that night, after we’d given Garyth a special dinner – roast chicken and gravy with stuffing, his favorite back then – we sang him his songs, and we tucked him into bed. He fell asleep quickly after that long but exciting day. The last thing he said to me before I closed his bedroom door was: The fans stopped for me.

I paced our bedroom as Laura sat in bed, playing with her iPhone. I flashed back suddenly, remembering a similar evening following Garyth’s last birthday: the two of us in the same relative positions, and me getting worked up as I insisted Garyth needed to be assessed for a learning disability. The wheel had turned. We’d come back around again.

“I think I’m ready,” I said, more to myself than to my wife.

She looked up. “To do what?”

I had a lot of trouble getting the words out, but when I finally did, I said I was ready to tell everyone. I was ready to talk about Garyth. But I didn’t want pity. I didn’t want judgment. I didn’t want condolences. I didn’t want people asking if we’d gotten vaccines or offering prayers or telling us our son might still have a chance to be a limited but valuable member of society. I didn’t want to make it about me, or Laura, or how hard things had been, or how scared and alone we’d felt. Not now. Not after Garyth’s success with school. Not after getting his IEP. Not after a simple act of kindness from a business owner had removed the pain we felt from Garyth’s lack of friends, or the isolation we too felt during a time of celebration. I didn’t want anyone to feel bad for us, because it would be as bad as calling Garyth all fucked up in the head.

“I want to say thank you,” I told Laura. “We need to say thank you.” I was referring to everyone and everything. But it required a first step. I looked her in the eyes. I knew that whatever I did next affected all of us. “Is that okay?” I asked. “Once I say it, I can never un-say it.”

She nodded. “Say it.”

So I did.

XVII

Half an hour later, I posted the following on Red Brick Station’s Facebook page:

I sent this message to Bill Blocher, and I'd like to share it with Red Brick's loyal customers.

'Hi, Billy. I have a rather unusual request.

As you know, I bring Laura and Garyth to Red Brick every Sunday around lunch time. I've been a fan of the restaurant since it opened, and Laura's been a fan since I introduced her to it back when we first started dating -- and now Garyth is, too. Red Brick is literally his favorite place to go. It's truly become our family restaurant.

Last November, Garyth was diagnosed with autism. Your gift of Breakfast with Santa tickets came right when we found out, and it meant more to us than I can ever tell you.

Because of his autism, we work especially hard to get Garyth out in public situations where he would normally withdraw, and Red Brick is a "safe" place for him: he likes to walk in by himself, and depending on the season, takes us right to his table of choice, whether in the pub or on the patio. He recognizes servers like Madelyne and has become comfortable asking for his lemonade ("Lemmi Beer") and saying "please" and "thank you." Less than a year ago, Garyth wasn't talking at all. These are huge steps for him. This makes our trips to Red Brick all the more special, and more than just fun: they're therapeutic.

Sunday is his third birthday. All he can talk about is "I want to go to Red Brick Station on Sunday and sit outside and have a beer and fries!" ll day and all night, he keeps telling us. He even woke the house the other morning at 6am with this announcement. So of course, we're planning to bring him for food and drinks, and to celebrate our boy.

Here's the unusual part: during the past few weeks, Garyth has developed a panic around ceiling fans. It's a visual processing issue for him that causes sensory overload, and is common for children with autism. He won't allow ceiling fans to be on in the house, and when we go to a store or business with fans, he becomes distracted and upset and begs for the fans to "turn off, turn off." He's waking from nightmares, crying, "No fans!" So with that said, I became a little concerned tonight when I took him for a walk and he told me, "I want to go to Red Brick, but no fans on."

I would never ask anything that inconvenienced you, your customers, or your business in any way. I used to manage a restaurant years ago, so I know how things go. I just wanted to write to you and ask if there was any way at all that for at least a brief time, and then only if he became upset, the fans on the patio could be switched off, or at least reduced in speed? If this is in any way an issue for your customers, I will completely understand. I just had to ask for the sake of Garyth, who can't stop talking about his Sunday. He doesn't care about presents, or the trip to the park with his best buddy that morning -- he just wants Red Brick Station.'

***********

When we pulled up today, Garyth pointed excitedly and exclaimed, "Fans are off!" He was beside himself with joy. This might sound funny or trivial to someone who doesn't understand. I probably would have chuckled a few years ago. But until you experience the profound effect something as "trivial" as a ceiling fan can have on your child -- on his birthday -- you'll never know how much we all take for granted. It allowed us -- all three of us -- to relax and enjoy ourselves. He spent the rest of the day telling us how much fun he had...because "no fans."

Thank you, Billy. Thank you, and Angie, and all your staff, for making a difference. Today was a scorcher, and switching the fans off only underlined that fact -- but you took it upon yourself to alert your employees and prepare them for our arrival. They made Garyth a priority. If I've learned anything, it's that small acts of everyday kindness make all the difference in the world, and it's why Red Brick Station isn't merely a restaurant with great food and fantastic beer: it's a place where customers are family.

Within an hour, there were more than two hundred Facebook likes. The number went up. And up. And up. We were “out” now. The post was shared by friends, by co-workers, colleagues, acquaintances, childhood classmates, parents, grandparents, local business owners, athletes, local celebrities, and, a few days later, Autism Speaks. On Saturday, my wife had been upset because she couldn’t get six children to come to a birthday party; On Sunday, there were hundreds, then thousands, of strangers sharing and liking and writing that my son’s story had touched them. They wished him a happy birthday.

We didn't announce it like a death in the family; we celebrated it. We celebrated Garyth and all he is and can and will be, and we invited the world to celebrate with us. Nothing weird. Nothing awkward. No painful sit-down discussions with friends and family. We spoke, and the world responded with love.

All it took was a Thank you.

XVIII

So that’s how it happened. That’s how we told the world. What was once difficult is now easy. I talk about my son’s handicap regularly; I write of it often. I wrote handicap just now because some sort of label – and remember, folks, labels suck – is deemed necessary for the purposes of explanation. Disability is no better, because my son is meeting all of his goals, and he’s perfectly able to accomplish anything and everything just as well as his peers. He takes a little longer, but that just makes it even more special, and worthy of celebration. Yesterday we took him to Red Brick Station and he peed in a public bathroom for the first time. I ordered another beer and high-fived him.

Once you out yourself, you’re public. People know. In our case, we outed ourselves to the clientele of a restaurant that thrives on repeat business. All it took was that Facebook post and then suddenly everything changed. When we walked in the doors, the fans would be off; and if they weren’t already off, then they would be, momentarily. And if we by chance had a new employee who didn’t know the drill, Garyth would politely ask: Will you turn the fans off, please? He can do that. He talks to the staff. He knows their names.

They began coming by to visit him immediately after his birthday: servers, bartenders, everyone. Madelyne is, as ever, his favorite Red Brick Buddy, but he's made new friends there as well. He’ll high-five Scott; he’ll shout HI, JULIE! across the crowded patio; he’ll run up to say hello to Billy; he’ll launch a penny into the fountain and tell me it’s For Katlyn. He knows he’s special there. He knows he’s cared about. He knows the fans stop just for him. My son is accepted by people literally watching him grow week to week.

Sometimes I’m stopped by strangers on The Avenue. Filmmaking hasn’t exactly made me public figure yet, but my son has. You’re the Dad with the little boy with the fans! they’ll exclaim. Once in a while, a customer catches me before I leave the restaurant to tell me they know who I am, and they know who my son is, and they’re so happy for us and how far we’ve come. They see him hugging the staff. They see him handing out candy flowers on Valentine’s Day. They see me teaching him to read using flash cards, constructing sentences like FANS ARE OFF AT RED BRICK STATION. Apparently people see us.

I always say Thank you to these well-wishers. I say that a lot now. It didn’t feel like enough when I said it Garyth’s teachers, and maybe that’s because I knew, deep down, I wasn’t doing my part. I wasn’t advocating. I wasn’t raising awareness. I was letting others do the heavy lifting for me and then pretending everything was normal. But what the fuck is Normal, anyway? Like I said, vantage point determines one's reality. So I stopped pretending and began talking. Teaching people about autism doesn’t require a soapbox or a bullhorn. It just means letting people know you’re there. Giving them an opportunity to participate. To grow. That’s what Garyth gave me.

So thank you for reading this. Thank you for being there when I finally found my voice, and when Garyth found his.

XIX

Oh yeah, and one last thing:

As I sat at work the day after Garyth’s birthday, watching the likes and shares increase and multiply throughout the course of my lunch break, my phone rang. It was the supervisor with whom I’d interviewed. She offered me the job.

And in the end, the love you take is equal to the love you make.

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.

Subscribe to: Posts (Atom)

erik kristopher myers

ekm

View my complete profile

Blog Archive ▼  2016 (1) ▼  August (1) 2. Coming Out ►  2015 (1) ►  November (1)

Simple theme. Powered by Blogger.