A couple of years ago, I stopped holding Charlie’s hand on our regular walks around the neighborhood. He was starting to let go more and more, to pull away when he wanted to walk on the grass or stop to examine a crack in the pavement. At first, this seemed like not the best turn of events. How was I to stop Charlie when we came to an intersection? What if he started running away?

At first, I made a point of walking reallyclose and our walks were a bit nerve-wracking, for me at least. And I realized that, for me, the first thing I had to work on was my nerves: I had to stay calm and carry on. Charlie doesn’t talk a lot (in words, that is) but he certainly understands a great, great deal of what he hears, and picks up a lot of non-verbal communication; it’s long been evident that he can sense when we’re mad, or upset, or anxious, or obsessing. And if I broadcast “anxious vibes” when he was walking “hands free,” Charlie would, more often than not, start running.

So we slowly learned to walk together on the sidewalk. Jim and I made rather a big show of stopping when the sidewalk ended and tried to get Charlie to look both ways to see cars coming. It was hard to gauge how much Charlie was understanding when we explained the dangers of cars (and of running into the street). His teachers have worked on crossing the street but the many bike rides that Jim has taken Charlie on in the streets (yes, it’s been hair-raising, on occasion) have been how Charlie, slowly and over time, has learned to watch for cars and to stop at the intersections.

In fact, when Charlie sees a car in the street, he stops, even if the car is not moving.

(If we’re at a busy intersection, we still hold Charlie’s arm or the back of his coat—-you just never know.)

I hadn’t thought of it those many afternoons that Charlie and I walked together up and down suburban New Jersey streets, and that Jim held Charlie’s shoulder and directed him to “squeeze brakes” at the stop signs—-but teaching Charlie to walk beside us, “hands free,” has been an essential skill and has made possible one of our favorite things to do altogether as a threesome, long walks.

It was super freezing cold Sunday afternoon. We all donned various layers (Charlie has taken to wearing a blue fleece-lined hoodie and a parka over it) and went to see the tree at Rockefeller Plaza. That meant walking down Kennedy Boulevard in Jersey City to get to the Journal Square PATH train and a long ride all the way to 33rd Street in Manhattan (it was warm, and there was time to half-snooze) and then down 5th Avenue to the tree. It was less mobbed than it has been in previous years (it was that cold) and we even got a fast glance at the skaters. Charlie craned his neck to glance at some of the shop windows at Saks Fifth Avenue (one with snowflakes riding in the swings—-like the ones at an amusement park—-especially caught his eye). Then back on the subway to Hoboken and a walk up from the waterfront to Washington Street for a hamburger (for Charlie) and then, with Charlie running and singing happily, hurrying back to the PATH station, a Boreas-like wind at our backs. And then back down Kennedy Boulevard.

And you know—on the last two legs of the trip, Charlie held Jim’s hand or my arm and shoulder. Not too tightly, and with a smile.

And then he’d run ahead, both hands tucked under his two hoods, and over his ears, and I could see him up ahead when he stopped at the sidewalk’s edge, waiting.

Work has been unusually hectic lately for me: Students are registering for spring semester classes and I keep walking out of my office to see a couple of students looking at me expectantly, and telling me “they just need a few minutes.” I’ve been saying “I can meet next week because my parents here and right now I have to get home to meet my son’s schoolbus” and have only belatedly realized why the students look so puzzled: What does the arrival of my parents have to do with them getting into their preferred section of English 134?

It’s very simple: On-call babysitting, grandparents style.

More grandparents (grandmothers in particular) are “filling the child care breach,” the October 31st New York Times notes. My parents live in California and come out to see us a couple of times of year. Charlie’s their only grandson; he’s so fond of them that just mentioning a visit initially leads to massive panic and (last night on a subway) barely suppressed loud crying. Yes, he’s looking forward to seeing them, but he’s also anticipating when they leave and how he’ll miss them.

We’ve tried picture schedules and calendars and social stories to make my parents’ stays, and the expectation of them, less anxiety-ridden. Recently, Jim and I concluded, the anxiety in Charlie is something he truly feels and it has to be gotten through. We figured he would get upset and vocalize about it—-and get over the anxiety, eventually.

Because grandparents—if I may use the word (after yesterday’s discussion)—-are really truly special, and that’s meant from the heart.

Try as we might, we couldn’t figure out a Halloween costume for Charlie. I found the captain’s hat that was part of last year’s costume (he was, yes, a captain) and Charlie took it off as soon as I placed it on his head. He’s never been too interested in dressing up for Halloween and has usually needed a big of coaxing to trick or treat: Charlie’s wary of walking up strange new walkways; once, a small dog appeared and started barking really loudly just as the door was slowly being opened. Charlie turned and raced back down the walkway and no promise of candy would draw him back, and he’s remained wary about walking into houses he’s never been into (not a bad thing, in and of itself).

Charlie’s class had a little Halloween party with cupcakes and (for those who wanted to dress up) costumes. And instead of going through the whole trick or treat thing, Charlie and I found ourselves heading to Jersey City in the late afternoon, with the plan of parking the car at my office, walking to the getting a new Leapster, Charlie’s been wanting to carry both it and his old one around. They’re a bit awkward to hold and just as I was going to offer to carry them in my bag, Charlie somehow managed to shove both Leapsters into the front pocket of is blue hooded sweatshirt. We proceeded down Kennedy Boulevard, which is a major thoroughfare in Jersey City. Both sides are lined with brick apartment buildings, again woodframe houses, storefronts, and there’s always a steady stream of fast moving traffic. As you get closer to Journal Square, i’s all storefrontss—Goodwill, dollar store, a restaurant adversing a very cheap breakfast as noted by a hand-written sign, a Payless shoe store—-and a Methodist church in front of which people hang out around at all times of the day, a shopping cart packed with plastic bags nearby.

Charlie likes to alternate racing ahead of me with shuffling beside me. Despite the roar of the traffic, he’s very good about following requests to stop, wait, wait up. Usually there’s not a lot of people out walking in the evening but Friday night, the closer we got to Journal Square, the more groups there were of children clad as superheroes, Sponge Bob, princesses, witches, with their mothers pushing younger siblings in strollers and speaking in Spanish or Arabic. Everyone had plastic pumpkins to hold the candy. They weren’t so much ringing doorbells as walking into stores, which apparently, besides selling mattresses or women’s clothing or sneakers, were carrying on an Amrerican childhood tradition.

Charlie and I moved among the trick or treaters. Many of the children’s costumes were completely obscured under winter coats and there were a few crying children, reaching for their plastic pumpkins and “just one more” piece of candy. We crossed Kennedy Boulevard and took the PATH into Manhattan, and then the B train up to where Jim’s office is. We got some take-out of Charlie’s favorites and brought it to Jim’s office where Charlie got to dine on Dad’s desk. Going home, we saw a far greater variety of costumes than one generally sees in a New Jersey suburb. There was a gorilla football player, a mug of beer (complete with foam), a team of Ghostbusters. a couple of accident scene victims……

Charlie kept his hood pulled tight over his ears and those two Leapsters in his front pocket, in his usual way; I’m almost starting to think that blue hooded sweatshirt if a bit of a uniform, comforting in its sameness. Who needs a costume when you know you’re guaranteed the good treat of a night out in good company?

Charlie loves to ride the subway (here he and Jim were one cold December evening last year) and subway stations themselves have their attractions: Here’s 23 subway stations all around the world that would be great to visit (including this cave roof at a station in Stockholm and the color scheme at the Munich Westfriedhof).

In the meantime, we’ll stick to the D train.

If you haven’t already read Measles not worth the risk, an October 6th op-ed by epidemiologist John Laurence Kiely, go here. Kiely recalls having the measles and then pneumonia, and being hospitalized, and under an oxygen tent, and his mother’s distraught face. But, as he notes:

Most Americans don’t remember those days. Why? Because four years after I got sick, the Centers for Disease Control and Prevention began a mass measles immunization program. By 2000, the number of reported cases of measles had decreased to 86 and the number of deaths to one.

So it is distressing to see that this year measles is on the upswing.

As of July, there were 131 measles cases reported to CDC, the highest number since any comparable period since 1996. Most pediatricians and public health officials believe that’s because fewer parents are bringing their young children in to get vaccinated.

And why is that? Because since 1998 the idea that the measles-mumps-rubella (MMR) vaccine causes autism has scared them away.

This is not just shameful. It’s scandalous. The entire phenomenon was spawned by a few studies by one research team with results that nobody else has able to replicate and publish in the peer-reviewed medical literature.

Measles is not “just a charming appearance of red spots on a two-year old’s stomach” and Kiely calls on federal public health officials to step up, speak out, make it clear that “The MMR vaccine doesn’t hurt kids. Letting them go without it will.”

Organizations and advocates who support the notion that vaccines or something in vaccines causes autism often suggest that nothing could be worse than autism; that measles, cancer, any disease is a fate preferable to the dreaded “autism.”

It’s a notion that I find really troubling and ultimately harmful and hurtful. Yes, we’ve had our struggles to help Charlie and do the right thing by him but life’s always better with Charlie, and Charlie has autism, and that’s all part of the story.

Charlie was diagnosed with autism when we were living in Minnesota. It’s now eight years since we left the Twin Cities, and we’ve stayed in touch with a family whose child and Charlie share almost the same birthday. Our trajectories and choices have been different but so much more is the same. Both Charlie and our friend’s child are in new schools this year, are older, and many changes lie ahead.

Jim had to go into his office for a university event and Charlie and I were late getting into meet our friends, due to certain subways not running on the weekend. We had to take a different subway than usual and I realized that we were at our stop too late; Charlie, amid all the unfamiliarity, did not want to get up. A man with a boy of about 5 said to me, not unkindly, “don’t worry, there’s another stop coming up really soon.” It did and Charlie and I got out around Lincoln Center and hurried over to meet our friends. We talked and walked around the Fordham campus some and then Jim got the idea of taking the subway to lower Manhattan. Our friend’s child liked that idea a lot and down we went.

Charlie was excited and exuberant to be amid old friends and made what Jim describes as a sort of Olympics-worthy run with a shopping basket in had through a store on the way to finding some dinner. There’s always too much to talk about when we see our friends, about schools and how far we’ve come and life. Because we’ve all indeed come far, done much, changed.

Jim hailed a taxi for our friends to take back to their hotel. Charlie hopped in first when it pulled up and had to get out (and then the taxi started to drive off without all of our friends getting in). I felt like I had started several conversations with my friend and not been able to finish any; there’s just too much to talk about, too much to cram into a meal and a good walk. Too much.

The three of us walked through Chinatown and Little Italy to take the PATH train back to Jersey City. When we got on the train, Jim and I saw red on Charlie’s fingers and around his mouth: Another tooth loose.

Another night with Charlie, with our bestest friend, and some very good old friends who are walking on the same path us.

Autism a fate worse than measles—I have to think not.

Late Friday afternoon Charlie and I take the PATH train from Journal Square into Manhattan to meet Jim.

A young man in a backwards baseball cap moves his stuff out of a seat so I can sit beside Charlie.

Charlie gently taps the woman sitting beside him. She’s busy texting and looks up, smiles, and says “I understand. I have read about it.” She gets off at 23rd street and we exchange good-byes.

At the 33rd subway station, only two of the MetroCard machines are working and of course my card has $0.00 on it. Charlie in his blue hoodie is not the easiest to see in a crowd of commuters and I grab the hem of the hoodie and we try to find the end of the line, get into one line that is “cash only,” get back in the original line. A man in a corduroy jacket who was originally in line behind us appears and tells me that there’s no line at the machines downstairs. I thank him and Charlie and I rush down behind the two men who were in front of us (they heard too). We get a new MetroCard and are soon at Jim’s office.

Contrary to what I used to think when I was in warrior mother mode, people aren’t your automatic enemies when you’re out in public with your child.

Routine routine routine.

Schedule schedule schedule.

That’s what life raising an autistic child is like, or is often said to be like: You’re locked in a vise of always doing the same old same old, lest the proverbial “all hell” should break loose. So Monday school, Tuesday school and pool, Wednesday school and bowling, Thursday…….

Yesterday, without thinking about it too much, Charlie and I stepped right out of the ol’ routine. On the one hand, he loves it, needs it, craves The Routine: All of our Sunday was punctuated with Charlie stopping to catch Jim’s or my eye, pausing, and intoning “school tomorrow.” We would reply “yup” or “yes, school” or “school tomorrow!” and he’d repeat the phrase a few times and then walk away, satisfied.

In fact, after enough of these assurances for the better part of a mostly lazy Sunday, Charlie told me he wanted to practice the piano, swam a couple of laps in the pool after a sluggish start (he had fallen asleep in the car en route), and biked off with Jim for several miles till dusk was falling. He asked for rice and opened a cabinet and took out a bag, then sat with his right cheek on the table and a hand beneath, watching it cook. Monday morning he awoke on his own, put on what I think is becoming a favorite shirt—-it’s got turquoise sleeves and the San Jose Sharks shark—-and Jim out him on the bus. His Monday was “stellar”; he was noticeably taking more initiative in the classroom and was fine working with different instructors.

My own students had been unusually sleepy and (at my 9am class) more than a few were either late or absent. We’ve been almost a month into classes and I wondered if the reality of being back in school had really hit, and they were weighed down beneath the thought of how many more months there are till the semester ends. The second class, which is much smaller (it’s a class in Elementary Ancient Greek), was characteristically quiet as I called students to write out declensions on the dry erase board and then (to my surprise), livelier when I launched into an explanation of how to accent ancient Greek words—-it’s a dry topic and a hard one, but they seemed game. Afterwards, students had questions about applying to graduate school—-someone wanted to drop a course—an editor for the student newspaper stopped by and we proofread several articles together—I had a quick conferral with a colleague and then realized it was after 2pm and I ran out the door and got home in time for the bus, despite a lane closure on the Pulaski Skyway (which is two lanes wide) and an accident.

I got too insistent about Charlie putting away the containers from his lunchbox before he had his afterschool snack, as he informed me. I felt foolish but promptly admitted it and Jim called and I said that we’d go into New York for a visit—-not exactly what we usually do on a Monday afternoon.

Jim’s going out of town tonight to give a lecture in southern California so I figured Charlie and I would have plenty of time to do “the usual.” Monday was the nicest fall weather day and by 4.30pm Charlie and I were on the road and off to Jersey City, where we parked the car near my office and headed down Kennedy Boulevard to catch the PATH train, me with two bags one over each shoulder. One had my stuff and Charlie’s Leapster, and the other—it fit perfectly in a big navy bag—the Dustbuster. (Charlie carried it for a few blocks too.)

Yes, you read that right. My Target-purchased, cyclonic action Dustbuster. Let me just say that Jim has just finished a book he’s been working on since the time Charlie was a baby—it’s on what Jim calls the Irish waterfront—and there are lots of books and papers, plus books and papers for more projects that are being attended to, plus the fact that last weekend while I was at a lecture on talking about autism, Charlie was having a fine dinner on Jim’s desk and Vietnamese spring rolls have a lot of shredded items in them, from carrots to green onions to cilantro. Top that off with a few packs of soy sauce and ginger and some brownie crumbs (and other kinds of crumbs) and sure there is a cleaning staff for the building, but how can you vacuum the floor if it’s covered in documents that need to be where they are?

It was a job for a sturdy Dustbuster.

Charlie had another dinner on Jim’s desk and then, having recharged the Dustbuster’s batteries, Jim then I set to work on the carpet and every nook and cranny, especially around an aging radiator. Charlie helped himself to an office chair and gave himself several rides up and down the empty corridor and I scrubbed and Jim stacked, and (mindful of it being Monday), we hurried onto the 59th Street subway, Charlie running excitedly ahead into a Manhattan night towards Columbus Circle and calling ……

Yeah, school.

We made it home by 9.30pm and before you know it, Charlie had taken himself to bed with a pile of blankets and the Leapster. And the Dustbuster was all charged up for action again.

43 year old Darius McCollum was first arrested in 1981 when he steered a subway car laden with passengers to the World Trade Center. This June, he was arrested for the 23rd time for being in a secure area of the Columbus Circle subway station in Manhattan while wearing clothing resembling that of a transit worker’s uniform. Today’s ABC News describes McCollum as having a “transportation fixation” and asked “Can Stealing Buses, Trains Be a Sickness?” It was only when McCollum was diagnosed with Asperger Syndrome in 2002 that his mother, Elizabeth, understood what might be going on. Supporters of McCollum argue that a solution would have been for the Manhattan Transportation Authority to hire him. McCollum is now hoping to be certified as a track inspector in the South and work on small railroads; he’s like to stay in New York, but is concerned about his criminal record:

When he was younger, Darius says he didn’t think about how risky it was for him to operate trains without official instruction. But as he’s gotten older, he understands the concern.

“I think about how dangerous it can be now … how more people could be hurt, even though I don’t do anything when I’m down there,” he says about his time spent in the subway recently.

Still, he adds, “I don’t go down there to hurt anybody. I just go down there because I still love the system.”

How many people, really, can say they love to be on the subway no matter how ragingly hot, humid, and odoriferous it gets?

“No” was Charlie’s not unsurprising response—-with his eyebrows (no other word describes it) furrowed—-when I told him we’d have to drive the bluish Mercury Milan parked across the condo parking lot. Jim had rented it late Thursday night at Newark airport and I’m sure Charlie had paid it no attention when he got on the bus Friday morning. Now he was standing beside the black car, whose right rear tire was a small spare with a yellow sticker and looking forlorn. I tried to find words to explain: “It has a flat tire—the tire’s broken” (what in the world was I saying? “broken tire” sounds like those ragged black strips from a semi’s recap tires strewn on the shoulder of the Interstate). “Remember how we got stuck in the mall parking lot yesterday and the man came and pumped the back of the car up?” “We actually need to get ALL new tires…..”

I tried to avoid saying that the car itself was “broken” as that word has difficult associations for Charlie. There was a time when he ripped, or tried to rip, his favorite photos and then any photo in half, and then cried. I spent a lot of time taping the photos back up and he’d be happy for awhile, and then tear them up again. I certainly didn’t want him to think we’d never use the black car again and tried to offer cheerful reasons for why the rental car would be fun. (For one thing, it’s smaller than our black car, not a bad thing in these times of big ol’ dream cars being put out to pasture, so more driving to more places is theoretically possible.)

I figured that Charlie would be hesitant about the rental car. Since we said good bye to the green car last January, it’s been black car full time and we spend a good amount of time in the car (which often feels like an extension of our condo). The black car is another station wagon and I suspect that Charlie’s used to being able to see the contents of the trunk all the way out the back window, vs. what a mid-sized sedan offers. Throw in that rental car smell and you’ve got something very unfamiliar, for a boy who needs a goodly amount of routine and repetition (yes, his teacher was back—didn’t get jury duty—and yes, he had a better day).

Charlie did eventually get into the blue rental car. Despite the heat, he pulled on his blue hooded sweatshirt and clamped his hands over his head as we drove into Jersey City. We were moving smartly until we went up the on ramp to the Pulaski Skyway. Charlie always looks around with interest as we drive it, as (to his right and left) are spectacular views of lots filled with cars just shipped in, containers stacked into pyramid-like structures, power plant smoke stacks, the Passaic and then the Hackensack Rivers, a correctional facility. If you’re driving east, straight ahead is the Manhattan skyline with the Empire State Building at the center. If you’re driving west, this is what it’s like.

Late afternoon on Friday we got a good long look at that view. The Skyway has no shoulder and two lanes going each way, separated by a concrete divider, and it’s 3 1/2 miles long. So if you can get into an accident, you just have to stay where you are because, aside from thin air, there’s no place to go. As drove up, the westbound lanes were suddenly empty with a lone police car and one black sedan. We went further—Charlie leaning on the windowsill, groggy (he’d had a fabulous swim, with the pool all to himself and me)—and saw cars with more than dents, a tow truck, more police, a firetruck. And then, endless lines of cars stopped and people standing around and talking on their cell phones, talking to each other, and leaning on the Skyway’s steel sides and taking in the view from a place where one normally only drives at 70 mph. There was a certain festive air to the whole scene.

We drove very carefully down our exit ramp at Broadway to Routes 1 & 9 in Jersey City. Carefully, because, once a driver on the on-ramp realized that traffic was at a standstill on the skyway, he or she tried to turn around on the narrow 2-lane ramp and (consequently) narrowly missing us cars going down.

Beneath his hood, Charlie’s eyes were wide open at such strange sights: People standing on the Skyway and going down the up-ramp (if you can’t drive, might as well get out and admire the Meadowlands below and Manhattan to the east).

The rest of the evening was pleasant, weather-wise and otherwise. We took the PATH train and subway in; met Jim; ate a lot of dinner; had dessert and left crumbs all over the carpet in Jim’s office. We took the subway and PATH home, and then drove over the Skyway fast, all traces of the accident, and the lines of onlookers, gone.

The Boys and the Subway is a picture-blog-essay-story by artist Christoph Neumann about a dad, two boys, and the NYC subway—one of Charlie’s (and Jim’s) very favorite places. It’s got letters and colored circles, and numbers, and trains that go in tunnels underground! and there are newstands in some of the stations to get sodas and snacks! and if you don’t mind the inferno-like heat in the summer, some really pungent smells, a few flickers of a not-too-small animal’s tale under the tracks, the sounds of the erhu or a steel drum, random trash, mechanical noises: It is the place to be.

Wasn’t it a man named Charlie who couldn’t stop riding the MTA?