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