Fund our walk for Jay

Jay and his Granddad

Every year around this time, a bunch of people from in and around Boston go for a three mile fundraising walk along a section of the Charles River near Harvard. The walk is called Walk FAR for NAAR, and the funds raised go to autism research. Last year this one Boston walk (out of 65 such events nationwide) raised more than $670,000 for research. You can read about sponsored research from last year here.

My son Jay is autistic, so not only am I walking, I have a painfully deep and personal interest in funding this cause. I want to convince you that you do too, because autism is very expensive to treat and manage. Any progress we make to prevent, mitigate, or cure autism saves enormous sums of money and impossible-to-reckon amounts of parental effort. So give on behalf of Jay, on behalf of all the autistic kids out there, on behalf of all the parents of autistic kids, the extended families, the networks of therapists and teachers and supporters and friends, for Jay’s sake and your own, give.

The process is as easy as a visit to the Jay’s Team page. To those of you who have already given, many thanks!

If you want to learn a little more about Jay, here are some stories I’ve posted previously on this site.

Finally, and curiously, I’m not the only Boston-based Ned working in the software industry who blogs and has a son with autism. Ned Batchelder (whose blog I thoroughly recommend) will be walking with his son Nat.

This is Jay

It’s been extremely gratifying to hear from so many people about my Red Sox essay. Thanks to everyone who has left a comment or mailed in a kind word. I’m off for a vacation for the next few days (20th high school reunion), but I thought before I left I would post links to two other pieces that I wrote about Jay. That’s him on the left…

The first is an account of his birth: Meeting the Little Man. The second was written soon after his diagnosis: Something Happened.

The Red Sox and me

All across New York City, baseball fans are pinching themselves and wondering: Is this the year? Is this the magical season when it all comes together and maybe, just maybe, the Yankees finally win that coveted twenty-seventh world championship, their first in over two and a half years?

As a Red Sox fan, I have a hard time getting excited for them. In fact, after the agonizing conclusion of the recent American League Championship Series, I had to write down some thoughts before I could go to sleep. Here is the result.

Maybe you don’t cheer for the Red Sox, but indulge me. Pretend like you do and read what I have to say…
Continue reading “The Red Sox and me”

Give Money to Fight Autism

This is my son Jay. Jay is four years old. He’s very handsome and good-natured. He’s also autistic. He can’t talk, he doesn’t know how to wave goodbye or point, and he pays no attention to the comings and goings of his parents or his little sister. Autism is a brutal disease, and it costs a ton of money to treat and manage (in general it is incurable). Even if you don’t know anybody with an autistic family member, you can be sure that working to prevent and cure it is a wise investment.

My writing here doesn’t generally get very personal, but I am making a direct appeal today. Later next month (September 20th), there will be a fund-raising walk here in Boston to support autism research. All proceeds will go to the National Alliance for Autism Research. If you are within the sound of my voice, please consider sending me a check for Jay’s team. If you’re thinking “well, maybe, but I don’t know how much to give” then do this: make a $20 check out to NAAR and mail it to

Jay’s Team
11 Belknap Terrace
Watertown, MA 02472

I will thank you on behalf of Jay and his whole family.

(If you want to know a little more about Jay, you might want to read this essay that I wrote soon after his diagnosis two years ago)

Autism and vaccines

Vaccinations stop kids from getting sick, right? So more vaccines means more healthy kids, right? Maybe not. As the number of vaccines mandated for American children before age two climbs and climbs and climbs, we may well be playing a very dangerous game. As reported in the New York Times Magazine (The Not-So-Crackpot Autism Theory), even some influential vaccinologists are starting to worry about the effect of piling on multiple vaccines, in particular those that use a mercury-containing preservative called thimerosal. This leads to a fascinating, subtle, and often barely civil debate on public health policy. Vaccines are most beneficial to a population when they are widely applied. So it’s important to prevent any hysterical minority from using voodoo science to frighten the masses into shunning vaccines. Authoritative government-sanctioned doctors get very good, in the public relations sense, at pooh-poohing people who question the value of vaccines. And yet…

And yet sometimes there are problems with vaccines worth calling into question. But doctors, like generals and stock brokers, are loathe to back down in public, since they realize how critical is the projection of total confidence to the success of their enterprise. When a doctor like Neal Halsey, who is profiled in the NY Times piece, publicly questions the safety of certain vaccines, he can be treated like a heretic. The word “science” is easily abused in a debate like this, but good science is hard to come by, hard even to define when the stakes are high and facts are needed quickly. Battle lines get drawn and sclerosis of reasoning sets in. It is a rare person who can move across a smoky battlefield and acknowledge that new information can lead to new conclusions. Dr. Halsey appears to be such a person. Here is an excerpt.

By the time the dust kicked up in that meeting had settled, Halsey would be forced to reckon with the hypothesis that thimerosal had damaged the brains of immunized infants and may have contributed to the unexplained explosion in the number of cases of autism being diagnosed in children. That Halsey was willing even to entertain this possibility enraged some of his fellow vaccinologists, who couldn’t fathom how a doctor who had spent so much energy dismantling the arguments of people who attacked vaccines could now be changing sides. But to Halsey’s mind, his actions were perfectly consistent: he was simply working from the data. And the numbers deeply troubled him.

Time magazine is doing a

Time magazine is doing a cover story on autism: The Secrets of Autism. Some numbers from the article… “Not long ago, autism was assumed to be comparatively rare, affecting as few as 1 in 10,000 people. The latest studies, however, suggest that as many as 1 in 150 kids age 10 and younger may be affected by autism or a related disorder — a total of nearly 300,000 children in the U.S. alone.” My son is one of those children; I wrote about him on this site last year. Autism is so baffling, so difficult to treat, that I am at a loss sometimes even to talk about it. But I want you to know this fact about me — if the only thing we can do is talk about it, then I will talk. Someday we’ll do more.

Something Happened

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.

Something Happened

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.

Meeting the Little Man

The Ides of March notwithstanding, Paracelsus has some happy news to share. For the tax year 1999, he gets to claim a dependent, along with the corresponding deduction.

Meeting the Little Man

My son was born at 11:33 PM on March 3, 1999, and I had a front row seat. He emerged, after two and a half hours of painful pushing, spindly and blue and remarkably quiet. Not quiet enough to worry any of the medical professionals in the room, but quiet enough for me to say, “Come on, let’s hear you cry, little boy! Make some noise! Let’s hear you cry!” And he did cry, small surprised yelps between what seemed to me long silences.

Some hours before, while my wife was in the middle of her labor, we had heard the sudden sound of a baby crying loudly coming down the corridor from another delivery room. That child’s powerful anguished crying stirred my emotions as I anticipated the imminent birth of our baby. It also served as a benchmark for the noise I expected my child to make. But when his time came, he didn’t make much noise. I was certainly amazed by the event of birth, but when I looked at his face, he seemed even more so. Who can blame him?

Here’s something that was on my mind a lot in the weeks leading up to the birth: I had no idea how I was going to handle labor and delivery. I’m pretty squeamish when it comes to blood and I’m somewhat inclined to get vertigo. I go completely pale and limp when I give blood. I was, therefore, visited by embarrassing visions of me passing out right as my wife needed me to support her leg or encourage her or massage her back or cut the baby’s umbilical cord. This is the canonical image of father as comic relief. Sitcom dad.

As the labor progressed, I could see that I was doing okay, which was an enormous relief. (Note to other expecting dads with similar concerns: don’t let your blood sugar drop. A strategically consumed PowerBar works wonders). I had expected everything about the labor experience to be utterly surreal, as though the air were going to be a different color and the people were going to move in slow motion. But for the most part, it was a long boring day. Cinematographers spoil us by having us believe dramatic moments are necessarily accompanied by music and lighting effects. In truth, everything looked normal—the sky was blue, the Cambridge traffic surged steadily by—except when I looked at my wife flat on her back trying to push a baby through her pelvis. That part didn’t look normal.

At the moment of birth, my attention moved rapidly from the baby to my wife to the doctor and around again. It was hard for me to focus on anything very clearly. I was prepared for, in fact I was expecting to feel, an overwhelming rush of love for the infant to engulf me, since I had so often heard this to be a part of other parents’ birth experience. But that’s not what happened to me. The experience of watching my wife go through so much pain, the detachment that came with watching the agony and the bloody viscous messiness of birth, and my watching the nurses and doctors for cues about things kept me preoccupied. I was still acutely aware of my own performance; was I a good father? Was I upholding my part of the deal in the delivery room? Would the nurses think of me as a goofy sitcom dad? I was glad I hadn’t keeled over, but I was still monitoring myself to see if I was asking the right questions, observing the things that needed to be observed: episiotomy, vacuum-assisted extraction, placenta, umbilical cord, stitches, intravenous Pitocin drip. Fascinating stuff, really.

It took a long time to come down from the heightened tension. It took a while for me to realize, in a direct visceral sense, that this was indeed my own child.


He landed in my arms first, immediately after being weighed—his grip reflex was strong enough for them to have a hard time prying him off the scale. Even with the baby in my arms, he didn’t feel like mine yet. He felt like a strange little visitor, an alien who, having stopped by, seemed just as likely to go back where he came from. He was bigger than I expected, long-limbed, and his startle reflex was an awkward unhappy buglike dance. How could he possibly have fit inside my wife’s belly?

And suddenly there he was, swaddled and laid up in my arms. To look at him, I could see that he didn’t mean to be the cause of so much drama and pain. He looked dislocated, surprised to be pulled from his comfortable lodging. He must have had a throbbing headache. His left eye was swelled shut like a prizefighter’s. With his right eye he gave me an unfocused questioning look: what did I mean to do with him? He squealed and snuffled softly.

A vivid image came to my mind, an image of a lonely railway station late at night. I was meeting, in the shadow of an empty departing train, this scared disoriented little man. He clutches a spent one-way ticket in his tiny fingers. He has absolutely nothing else. He can’t go back where he came from. He doesn’t speak my language, he is shivering with the cold, and he needs so much help. This is when the tension and detachment finally begin to melt away. This is when the tears come pouring. Come with me, little man. I can help you.