Something Happened
by Ned Gulley
My son Jay first spoke to me when he was three months old. As a proud father, you will understand, I exaggerate. It’s an occupational hazard. I had just finished feeding him and was cradling him in my arms when he looked me right in the eye, and smiling, said, "Goooooh." I nearly jumped out of my skin. For some reason, a jolt of exhilarated fear shoots through me when I see first-time behaviors like this. I had gotten used to feeding and cleaning a little gurgling baby object, and suddenly here was proof that it, he, was watching me. He sees. He thinks. He speaks. He is not a little gurgling baby object; he is a little gurgling man. His impromptu speech gave me notice that there were two people in the room, not one. His smiling assertion gave me the creeps in a very basic "this is what life is" sense, because I helped make him. Happy creeps.
Two years later, my son has been diagnosed with something called pervasive developmental disorder, an affliction akin to autism. His development is delayed in almost all respects except cuteness, in which he excels. In particular he is behind in language and social interaction. The three deficits at the center of autistic spectrum disorders are a lack of social interaction, a lack of communication, and a lack of imaginative play. Nobody knows why it happens or exactly how, but it affects roughly one in every five hundred children. To put these numbers in perspective, consider this: if you have only one child, and that child has PDD, then it affects every single child in your family.
Jay learned to walk in the same miraculous way that most children learn to walk, pulled upward as though by a force opposing gravity. But he didn’t learn to talk the way that most children do. By age two Jay’s developmental progress had stalled or regressed. He spoke almost no words, and no amount of shouting would get his attention, even though his hearing is perfectly good. There was a time, a very brief time around age 15 months, when he would run to the door shouting "da-da!" when I got home from work. I thought then he would continue to do it night after night, but he stopped. He lost interest in seeing me come home. He lost interest in seeing anyone enter or exit the room. Sit right in front of him and he won’t look you in the eye. Some unfathomable biochemical blight is disturbing the development of his brain. In moments of anger and melancholy, I can sometimes picture the scaly hand of some unseen demon carelessly grinding out a burning cigarette on my son’s small warm brain, stopping some vital process forever. The boy who greeted me with a squeal of delight went away. Where did he go? It’s like witnessing a slow-motion abduction.
How does a child go from being perfect in your eyes to a child you understand to have a serious and potentially lifelong disorder? People want to know. For us it went something like this. We were pleased, at eighteen months or so, that he was a musical child. He could hum a good many tunes, but for a while his particular favorite was "Twinkle Twinkle Little Star." He hummed it all the time. Eventually the woman who provided day care for him two days a week mentioned that she thought this behavior, along with his lack of speech and lack of socialization was odd and potentially a cause for concern. I resisted strongly the urge to start worrying. Worrying about children is easy and almost always unwarranted. I didn’t want to label my son; I wanted to give him some slack. Our pediatrician, who is efficient but forever rushing, said essentially, "Don’t worry. If he’s still not talking at age two, have him evaluated." So age two became the worry point.
I pushed it to the back of my mind, but by his second birthday, the anxiety was gnawing terribly. His language still hadn’t developed beyond a few rudimentary sounds. He said "da-da" but not clearly in reference to me. Most disturbing of all, he didn’t seem to care whether we were around or not. We scheduled what’s called an "Early Intervention" evaluation, and I began reading. What we learned in the next few weeks tipped me from simple anxiety into a dark pit of despair. Autism became the center of my world. Dealing with inescapable awfulness is something like being dragged behind a tractor. Nothing I could do or say could make the awfulness go away. Every night I went to sleep thinking about it, and every morning I woke up thinking about it. The worst part about the early period of initial assessment was the feeling that no action of mine was going to make anything better. I was a bystander, aware of an impending car crash, but unable to stop it. Fortunately the period of immobile terror didn’t last long. The fear persisted, but working fear beats passive fear any day of the week.
When you know your child has a problem, getting a diagnosis is a strangely ambiguous experience. On the one hand, you want very badly for the doctor to say there’s nothing wrong. But you know something is wrong, so you want a diagnosis that is tidy and straightforward, something that will put you on a short path toward wellness. Secretly you yearn for the doctor to say something like "Well would you look at that! Here’s your problem. All we need to do is turn on the language oscillator and everything will be just fine! Must’ve gotten switched off in the crib by accident." But it doesn’t work that way. This terrible thing has come to roost and no simple fix will drive it away.
When beset by the terrible, it’s hard to avoid a sense of inconsolable isolation, the feeling that no one can truly sympathize with you. All words of comfort seem patronizing or empty: you cannot know my pain. If you would show me sympathy, then you must come live here, inside my skin, lodged up against my aching heart, not for today but until the end of time. Naturally it cannot be done... in knowing my pain I am completely alone. But I am reminded that even as you cannot know my pain, neither can I know yours. Every card can be trumped. We all suffer, and in that we are bound together. The point of separation is the point of union. I take comfort in that connection. If you choose to give me your sympathetic words and prayers, I will take them. I will put them here, inside my skin, next to my aching heart. It helps.
In the weeks since the diagnosis, my wife and I have learned a great deal about autism, pervasive developmental disorder, and available therapies. We have begun extensive behavioral therapy. It shows promise, but requires hours and hours of painstaking one-on-one therapy every week. Slowly slowly Jay is learning a little and beginning to enjoy social interaction more. My feelings of unrecoverable loss and bottomless self-pity are giving way more to delicate hope and a galvanizing sense of action. The present is not so bad; thinking of the future is what brings out the fear. Jay may recover fully and turn out fine, or he may require a lifetime of special help, or he may end up anywhere in between. Time has a way of making history look inevitable, but that luxurious perspective comes only at the expense of time itself. In the meantime, we keep plugging away.
So this is what happened: my wife and I are lucky enough to have a little boy. He is not a normal boy. I can add quotes: he is not a "normal" boy. Or perhaps I should say he is not an ordinary boy. Or: he is not common. It’s easy enough to play with the language. But it’s damn near impossible to see past everything to the child. Behind the thicket of words, behind the jargon, the diagnoses, programs, forms, appointments, doctors, therapists, and speech pathologists, behind the adjustment to new realities, behind it all there is a boy, a little man, two years four months old. He is not a cute drooling toddler. He is Jay. He is not a darling angelic lost little boy. He is not autistic or developmentally disabled. He is Jay. Then again, he is not Jay. He is the one we mean when we say "Jay". He is himself. He is... well, there he is. He is the one I love. He is my son.
What Being the Father of an Autistic Son Taught Me
About Being a Red Sox Fan (and vice versa)
by Ned Gulley
Which Red Sox fan do you choose to be? The embittered one that mumbles about curses and looks forward to defeat with perverse relief, or the one who is pained but pleased with an excellent season and some extraordinary post-season play? What I really want to know is: why is it so damned easy to be the first one? Why are there so many people eager to say "I told you so" or "See... they always let you down"? But really I do understand this urge. I understand living with chronic disappointment because my son is autistic. The connection to baseball may not seem so obvious, but bear with me for a few minutes while I explain.
Some years ago I was flying out of Miami after a hectic family vacation. We were running late getting to the airport, and since we couldn’t find a gas station to fill up the rental car, we had to shell out $5 a gallon at the car return. I was already fuming about that, and then the rental guy found a dent in the car we’d have to pay to fix. A few minutes later I was angrily shoving a tottering heap of rolling luggage through the stifling heat outside the airport, and I remember thinking "Oh, wouldn’t it be JUST GREAT if all this luggage fell over?" And because the sentence was so clearly formed in my mind, I suddenly realized it was literally true. Some part of me thought it actually would be great if the luggage all fell over. Why? Lots of reasons. It would justify my shitty mood. I would have something to kick. I could curse and shout and do a little stomping dance. But my realization calmed me down. I was able to say to myself "I don’t want this luggage to fall over." I wheeled it carefully through the airport and the day improved dramatically from that point on. My son Jay was a year old then (he took his first steps in Miami). He is now four years old and completely unable to talk. He shows little interest in his parents or anyone else.
He is a struggle to deal with every day. Working with him is, as a general rule, tedious and unrewarding. When he does something new or successful, it is a small victory --- he pulls his socks off on command, or maybe he pedals a tricycle ten feet before losing all interest in the exercise. I am always tempted to measure these small victories against his larger dysfunction. I am tempted to say "Great, but he’s still hopelessly retarded." Because I don’t want him to make me hope. I have nursed hopes, coaxed dreams along superstitiously and been crushed again and again. At this point it is very unlikely that Jay will "recover." A manageable status quo is what I hope for now. I recede into bitterness. Damn you for making me hope! Keep up your predictable failings and my heart can take it. But if I keep hoping it will kill me.
I have only lived in Boston for 12 years, and to tell the truth, I’ve never really been that much of a baseball fan. But I’m amazed at how this history just seeps into you, as if I’ve had season tickets at Fenway since Babe Ruth’s last season here. It’s hard work to be a Red Sox fan, but you get drawn into it anyway. On the other hand it couldn’t be easier to be a Yankees fan. Just put your car in cruise control and watch the championships pile up. Yogi Berra has a championship ring for each of his ten fat fingers. Ted Williams went into his icebox without a single one. Former Boston ace Roger Clemens finally got his --- he moved to New York. Similarly, it’s so easy to have a normal son. I see them at the playground, these fathers and sons, kicking the ball back and forth, laughing at each other’s jokes. They can speak to each other! Then I look at my son running around in circles making squealing noises, lost in his own world. And I lose myself in a whirlwind of anger and jealousy.
It’s so easy to be a Yankees fan. Only recently have I managed to enjoy my son’s small successes by celebrating them as successes. A good day is a good day. Let it be a good day. A good day is not an instrument of torture designed to ratchet up the agony of your ultimate and inevitable anguish. When you start to fear good days, you have gone down a dangerous path. A good day can lead to hope, and hope can later be extinguished, but a good day is a good day, and you have to find a way to weave that into your life.
The day you think of a post-season victory by the Red Sox as an act of cruelty aimed at your heart, you have become less human. A post-season victory is a good day. Happiness is not an end state, but a fleeting moment. When it catches you (it never seems to work the other way around) gather it like a thirsty, shipwrecked sailor gathers rain. Honor it. There were some beautiful moments this season before that crushing Yankee home run in the eleventh inning that pulled down the curtain on it all. Does that home run have the power to turn all those gemstones into daggers? No. a beautiful moment is a beautiful moment.
I hate the Yankees. And I don’t give a good goddamn about building character by losing. I wish my son’s brain wasn’t so cruelly ravaged by this hateful malady. I am not well-adjusted. I am angry and unreformed. Every day I ache. But a beautiful moment must not be denied. If I can see my son smiling and that makes me smile, that’s a good moment. And for all the Sox did this season, well,
I challenge you to take away from them what they did for you. They gave you something wonderful and you took it. That’s as happy as happy gets. They were not taunting you. They were not setting you up. They were playing their hearts out. As I say to Jay when bitterness wells up in my throat and my teeth clench in frustration, "It’s not my fault. It’s not your fault." No one can make you hope. You have to take responsibility for it yourself when you do hope. You cannot make happiness conditional, because there is no end to conditions. Make up your mind now: either let victories be victories when they happen or live forever in the dark shadow of defeat. Some days grind you into bitterness. But a good day is a good day. As the cruel Red Sox losses accumulate, the lore deepens and the story only gets richer. It’s so painful! But how can you not fall more tragically and completely under their spell? As for me, after a long day of dealing with Jay, dealing with scratching and screeching, I want you to see him on my lap with his sippy cup, smiling and looking into my eyes. Do I dare fall more deeply and tragically in love with him? Yes.
