Charlie’s bus ride home from school seems to take some 15 minutes, hence my daily rush from work to get to home. The December 8th Newsday reports that more than 1000 special needs children are”sent off Long Island for education and sometimes housing, costing schools and the state millions of dollars.” Two New York state lawmakers and parents are calling on education officials to change regulations that currently limit how many children can be educated at “special sites” on Long Island.

How far does your child—or do you—travel to school?

(Not, it’s hoped, two hours.)

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.

I mean, at least two hours each way, to school and then back home? That’s how long 5-year-old Brandon Montanez, who’s autistic, rides the bus to get from his home in Bensonhurst to Learning Springs School in Manhattan, according to yesterday’s WCBStv. Brandon’t bus ride used to be 90 minutes long each way—-already too long—-New York’s Office of Pupil Transportation changed his route (and his driver and bus matron) on short notice and, more than understandably, it hasn’t been easy for Brandon:

“It’s been a nightmare,” says Michelle Montanez, Brandon’s mother. “He was jumping on his seat, he was throwing off his seat belt, he told them that he wanted to scream and he wanted to do it. He started banging his head against the side of the bus and he’s been doing it every day since he’s been on this route. It’s too much for him, it’s too long.”

2 hours each ways is a long bus ride for any of us and not the way for any student to start a long day of learning.

Six deep-sea divers have been enlisted by the city of New York to repair a valve at the bottom of a 700-foot shaft in Dutchess County, yesterday New York Times reports. The shaft is located in the Rondout-West Branch tunnel, which is 45 miles long, 13.5 feet wide, up to 1,200 feet below ground” and which brings half of the water supply to New York city from reservoirs in the Catskill Mountains. For more than a month, the six divers have to live

in a sealed 24-foot tubular pressurized tank complete with showers, a television and a Nerf basketball hoop, breathing air that is 97.5 percent helium and 2.5 percent oxygen, so their high-pitched squeals are all but unintelligible. They leave the tank only to transfer to a diving bell that is lowered 70 stories into the earth, where they work 12-hour shifts, with each man taking a four-hour turn hacking away at concrete to expose the valve.

And more about how the divers work:

Three divers at a time climb into the steel bell, an orb that is lowered down the shaft for 20 minutes to reach the pumping equipment in the tunnel. The bell is tethered to a bundle of cables carrying air, communication lines, electricity and water. Each diver works for four hours and rests underwater for eight before returning to the tank at the surface, where 32 more employees of Global Diving and Salvage, the Seattle company running the project, pass meals, clothes and books through an air lock.

In the saturation control room, Patrick Boyd, a life-support technician, monitors the divers’ air on a panel of screens, one of which reads 2.26 percent, for the amount of oxygen. While underwater, divers often get more oxygen in their mixture to keep them alert. John Lapeyrouse, a dive supervisor who is one of the few who can understand the helium-riddled voices, one of the side effects of what is called “saturation diving,” talked to Mr. McAfee as he worked the other day.

Apparently, the divers can ” request whatever food they like, including steak and fresh salads” but because “the air pressure in the tank dulls the taste buds,” they have to add a lot of “Tabasco, salsa and jalapenos.” And when their work is done, they must “remain in the tank for a week to gradually wean themselves off helium.” Says Robert Onesti, who’s running the project for Global Diving.

“It’s not for everybody. It’s heavy construction work, and it’s deep.”

You can say that again: I’ve come to love swimming thanks to Charlie, but dislike going underwater. Charlie, on the other hand, seems to thrive on being in deep water and, indeed, being under it. Often when we swim at the YMCA pool, he positions himself just where the water is almost over his head, and crouches down under and then propels himself out, and then ducks down under, jumps up out—-repeat, repeat, repeat.

Before he goes to sleep, Charlie always wraps his feet and legs tightly in at least two fleece blankets: Deep pressure seems not merely comforting, but essential, to his system. I’ve said it before, but I don’t know what he, or we, might have done in the past before the invention of polarfleece. And I’ve given up getting potentially scratchy sweaters for Charlie and shirts with stiff cuffs and collars: If he needs to wear those when he’s older for special occasions, he and we can deal.

Who knows but Charlie might, indeed, like scuba diving (I wouldn’t be the one going under with him, that’s for sure)—being under so much water— living underwater for a couple of weeks in a pressurized chamber might (who knows, again) appeal to him.

There’s something out there that any of us, with our diverse talents, can do, even if you have to go to the bottom of the ocean to find it.

4 hours 49 minutes 20 seconds.

That was Jonathan Brunot’s time in this year’s New York City Marathon. Today’s New York Times details how his race went:

Jonathan aced [the NY Marathon] Nov. 2 on his first attempt in 4 hours 49 minutes 20 seconds, including timeouts for a slight tantrum at Mile 22 (he refused to drink his PowerGel beverage), a slight leg cramp at Mile 23 (payback for not hydrating) and a slight fumble near the finish line (he paused to wave and scream and applaud himself when he caught sight of his tearful mother, Olga, in the bleachers).

Jonathan doesn’t know he didn’t quite nail Mr. Del-Cid’s goal of 4:30. He also doesn’t know Mr. Del-Cid’s goal for 2009 is for Jonathan to run the marathon in under four hours. Time and goals are irrelevant concepts to him. But he will surely recognize the race: It’s word No. 14 in his lexicon. “Vincent,” and “to run” are words Nos. 11 to 13.

Jonathan dressed himself in running gear and bolted down two bagels before the race, and he heard, parroted and retained a complicated new word: marathon. Or, as he gleefully mispronounced it the other day, “Malathon, malathon,” while squirming self-consciously next to his coach on a sofa in the home he shares with his oft-exhausted parents. They double as his 24/7 caretakers. Though he is much less exhausting since running liberated him and, in a sense, them.

(”Maraton” ’s the name of a Korean movie based on the true story of Bae Hyong-Jin, who’s autistic and who’s a marathon runner.)

And, Jonathan’s father, Dr. Verlaine Brunot, is “so convinced of the marathon’s positive impact on Jonathan that he is training him for the bicycle phase of an Oyster Bay triathlon.”

Think Charlie may have to join Jonathan in training for that someday—–he and Jim were out on their bikes for over 2 hours today (minus the time for a snack stop).

Neurologist Oliver Sacks wrote about animal scientist professor Temple Grandin as an “anthropologist on Mars” and she has referred to herself as an anthropologist from Mars“—-last night, we went to Mars.

Ok, it was Mars 2112 on 51st and Broadway in Manhattan, a “space-themed restarant” that is (according to its website) a “spectacular mingling of fantasy and reality, a 35,000-square-foot, bi-level, multi-dimensional, immersive environment that catapults travelers to a completely new world.” That is: A below-ground restaurant in midtown Manhattan with the usual kidfood and a lot of glowing red lights emanating from the floor via grills and out from behind some clearly synthetic Mars-sort of rock formations on the walls, and a couple of Martians making the rounds (getting their photos taken with kids and teens).

Mars was indeed beyond the orbit of our usual places to visit, at least on a Friday night. We’d been invited to a birthday party for a turning-11-year-old—it’s been awhile since Charlie was last invited to a birthday party and we were eager to go. I suspected the, ahem, “atmosphere of Mars might be on the over-stimluating side, due to noise, lights, the sounds/beeps/etc. emanating from the video arcade. But like I said, it’s been awhile since Charlie was invited to a birthday party and his whole face perked up at the mention of those magic words.

Getting there was extra-arduous as it was pouring rain and traffic was at a standstill on numerous spots on the highway. We made our way in mist and slippery roads to Jersey City and parked the car and, with the birthday girl’s present wrapped in Charlie’s rain coat, made our way to the PATH train. We met up with Jim outside of Radio City Music Hall, amid lies of people all getting distracted looking at the lights (it’s Christmas season for sure, at least in regard to decorations) and the shop windows. It was unseasonably warm and the rain gradually let up.

Mars 2112 turned out to be pretty much as anticipated, certainly in the noise department. Charlie followed Jim in amid the glowing red lights and the staircases amid the Mars-rock walls and past the Cyperport where the video arcades beeped and twinkled. He sat at the end of a long table where some 20 kids were eating White Castle-like sliders and fries and making an incredible amount of noise (not for any particular reason, other than that they were kids at a birthday party in a space-theme eatery). When kids wanted to squeeze past Charlie, he moved over as they directed. He wasn’t so sure about eating those little burgers; his smile was generous when the cake (well-candled) was brought out, and happy singing commenced. When everyone raced off to play video games, Charlie remained at the table, quietly attentive and nibbling at the fries as Jim and I talked to the birthday child’s mother and some friends.

“He reminds me of my brother,” one woman said, her eyes on Charlie who was carefully eating some fries and ketchup. She told me, years ago, her parents had taken her brother to clinics and tried to find out “what” he had; of how he’d been institutionalized when he was younger than Charlie is now; of what happened—-the institution is not there anymore—-there’s a reason; of how he lives now in a group home and how he never talked. Of how, there was so little (as in, flat nothing) for her brother in the 1950s.

And I thought about the journey we’d been on with Charlie and thought, knew, we’ve come a far far way, indeed.

Charlie pulled on his blue hooded sweatshirt as we talked and grabbed his two Leapsters and stood up looking at us, and waiting, quietly, patiently. Waiters cleared off the table, a short Martian danced by, and someone else had a birthday cake delivered. The woman gave Charlie a warm smile as he tugged at Jim’s arm to go and she wished him good-bye, more than kinly.

I’m not sure we’ll be going back to Mars but who needs to, after one visit that was (I have to say it) out of this world, and beyond.

Two recent stories in the New York Daily News highlight the struggles of families to provide for their autistic children.

In Staten Island, a police detective got caught up in the subprime mortgage crisis when she bought a fixer-upper with the intention of renovating and quickly reselling it, to pay for therapy for her 3-year-old autistic son. The fixer-upper was to be auctioned off today and the detective, Regine DeBellis, is in danger of losing her own house, too. She says:

“I didn’t get into this because I wanted to shop at Saks - we wanted to get Matthew in a program that treats kids with his kind of autism how not to hurt themselves,.”

In Manhattan, federal prosecutors have accused the owners of an East Side building for discriminating against 11-year-old Aaron Schein. Schein has Asperger’s Syndrome and his doctors had said that a service dog would help him with anxiety. Among those demands were that “the dog could weigh no more than 10 pounds and that the pooch couldn’t be left alone for two hours or more.” As also noted in the New York Times’ Well blog, the lawsuit claims that the building’s owners violated the Fair Housing Act by imposing “unreasonable demands” on Aaron’s parents.

Hope the DeBellis’ story can have a similarly happy result.

The Romans, as I tell my incredulous students, did not have a concept of a weekend. Each months had its Kalends, Nones, and Ides, and feriae (holidays) in which the usual negotia of lawsuits, labor, and other transactions concerning the res of daily life were suspended.

While he does not talk about it, Charlie’s got an internalize sense of time. He had Thursday and Friday off from school as it was the annual convention of the NJEA (New Jersey Education Association). Its a small rupture in his schedule to have the one long weekend in early November. As Jim and I have to work, my parents visit from California.

Saturday Jim had to be at a conference and I went to see a friend, and then planned to go into New York to meet Jim and have dinner with friends. It was pouring rain for most of the day and this added to Charlie being less than peaceful easy-feeling all day: Exercise outside was not possible and he ended up spending a lot of time in the back seat of the minivan my parents had rented. Further, our black car needed fairly serious repairs (it has almost 100,000 miles on it; bought it in April of 2005) and Charlie, while enjoying the space to spread out in the buslike interior of the minivan, kept calling for the black car. He was relieved when I picked it up mid-Saturday afternoon, after which I drove to Jersey City on my way to meeting Jim.

It all added up to a lot of out of routine-ness. I called my parents while waiting to meet Jim: A dumped-over bowl of yello rice, back and forth running around. Only after I talked to my parents did it occur to me, it was the third day since Charlie’d been in school and it was time to be back there.

As he will be tomorrow, soon enough, and soon enough we’ll be dealing with Thanksgiving — but, without procrastinating too much, I’ll leave that for tomorrow.

(Sunny today—-bike ride in order.)

Tomorrow morning, Nadine McNeil will be in her fourth New York City marathon. Unable to use her right arm and right leg after a stroke when she was 8, she uses a handcycle. She’s not, as a New York Times article notes, the only member of her household who’ll be the marathon: Her 18-year-old son Tyler, who’s autistic, is running his first one. Tyler has won “dozens of medals” in the Special Olympics and especially for swimming; Penny Shaw, the 71-year-old director of Project Happy, which first noted Tyler’s athletic ability, describes him as “’saved by sports.’”

Tyler will be running with one of his special-education teachers, Vinny Bruno. His mother won’t be with him throughout the race; the New York Times focuses on the close—even symbiotic—relationship between mother and son:

Nadine has poured her life into her son. Tyler, in turn, is what she calls “my right arm.” He compensates for her disabilities by tying her shoes. He does her buttons and zippers. If she tries to put on her coat, he will immediately rush to her side and gently lift her right arm into the sleeve.
……….
in November 2006, Nadine found herself at the starting line in Staten Island. She had attached her paralyzed right arm to the handcycle’s pedal mechanism with duct tape from Home Depot. She powered the chair with her left arm and finished the marathon in 4 hours 3 minutes.

As Nadine trained for more races, Tyler would jog by her wheelchair. Nadine began to notice a difference in her supposedly frozen arm: It had gained some power and even some range of motion. Her doctor noticed, too.

“It has become much stronger in just the past year with all the practice she’s had,” said Regina Coyne, Nadine’s general practitioner.

Last November, Tyler became confused when Nadine boarded the bus to travel to the marathon starting line. He wanted to go with her.

Something more than teamwork—-sure, Charlie depends on Jim and me but, more and more, he helps us out; more and more we’re interdependent. Nadine McNeil got started racing in a handcycle when the founder of one of Tyler’s sports programs suggested she give it a try. If it hadn’t been for Charlie, I would never have learned how to swim.

Runman and What Sorts of People have also blogged about Tyler and his mother, and their big day tomorrow.

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?