I posted a new piece to the Star Chamber front door. It’s about my son and his recent diagnosis with a strange syndrome called PDD. I also simplified the Star Chamber main page rather drastically, since there has been so little activity there recently.
In March of 1999 I used this space to talk about the arrival of my son. I have a few more words to say about him now.
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.
Some good stuff from Google: the Google Zeitgeist. See who the pop culture rising and falling stars are this week. Top gaining entry last week: the Tour de France. Paula Poundstone will be glad to know that she’s falling out of the news.
Put your face on an action figure: Toy Builders will take your 3-d computer models and turn them into solid objects. This is the beginning of 3-d printing at the local Kinko’s. Company’s like GM and Disney are using solid printing like mad, but this is the first place I’ve seen that caters to the mass market. It’s particularly interesting that their main focus is toys.