It’s back to school and we’ve been noting the time and date for Back to School Night (this Thursday), how to explain to the bus aide and driver that Charlie needs a little extra time to get out of his seat after the bus pulls up, what afterschool activities to pursue. Tomorrow’s New York Times has an article about traveling with autistic children on planes, trains, and airplanes, and cruise ships—-one family in particular does what we do, renting a house at the Jersey Shore. The NY Times mentions a couple of places, too, that have programs for special needs kids: Adam’s Camp at Snow Mountain Ranch, in Granby, in Colorado; Smugglers’ Notch Resort in Vermont; and the Autism on the Seas cruises.

We’ve already purchased our tickets to go to California to see my relatives in December. I’m still remembering some discussions from the past summer about autistic kids on airplanes—-for the moment am feeling glad to be home and back in the routine of things.

I haven’t been able to get Christopher Marino and his father, Walter Marino, off my mind; I keep thinking of what was it like to be in the water, treading the water, for hour upon hour? And in the dark, throughout the night, first together via the call-and-response of lines from Disney movies Toy Story in particular)?

And I have to say it: What happened to Christopher—being caught in a rip tide and and swept out to sea—-is something that I have thought could happen to Charlie. Swimming in the ocean is one of Charlie’s most favorite things to do and he’s very often the farthest out. Jim’s always with him, though this year was the first that it became quite apparent that we can’t really keep up with Charlie in the water. I know that if Charlie ever got washed out farther and farther into the ocean like Christopher, Jim—just like Walter Marino—-would be swimming right after him, though we’re both quite sure that Charlie could easily out-swim us.

One reason for this is because Charlie does not (as far as I can tell) feel any alarm to be in the water in general and in the ocean in particular. The same is described of Christopher in a September 11th News Journal Online article highlighted by a friend:

For some autistic children, the sensation of water is as comforting as a blanket.

So what was Christopher Marino feeling during the 14 hours he was swept out to sea last weekend?

“He can’t tell me. I don’t know. I wish I did know,” his mother, Robyn Bishop of Oviedo, said in a telephone interview Wednesday.

Yet she said his autism — the brain development disorder that blocks Christopher from telling his mom what it was like to be all alone, drifting away from his dad in the dark — might well have helped save him.

Such is the paradoxical nature of autism, say researchers and therapists.

For Charlie in particular, the sensation of water is as comforting as a big fleece blanket. Charlie was 6 or 7 when he started wrapping himself up in a king-size dark blue fleece blanket; this proved to be one of the first things that he did in an effort to comfort himself. He’s insisted on sleeping with a big fleece blanket at night ever since and does prefer that his blankets be blue.

Dr. Richard Solomon, an autism professional based in Michigan, also praised Christopher’s father’s response: “‘The dad was brilliant…….He treated the event as something that was fun for the boy. (Christopher) probably did not have the anxiety about, ‘When are they coming to get us?’” Indeed. Like Christoher, Charlie does not have a lot of language, but Charlie’s extremely attuned to the non-verbal aspects of communication (tone of rhyme, speed, volume, gesture, amy melodic elements, gesture) and picks up on emotions, and especially anxiety, fear, and anger. I’ve been trying to teach myself to at least feign nonchalance when he and I are in a tense and difficult situation in public, lest he mimic my worry.

Christopher is described as unable to “understand the gravity of the situation — and the dangers that lurk beneath the ocean’s surface”; it’s this, it’s speculated, that “might have kept Christopher from desperately fighting the current and sapping his strength.” I do think Charlie would find it at least a little odd to be swimming for so long and certainly in the dark. Charlie does seem to have a supreme and natural confidence in his ability to stay afloat in the waves. He’s not (as his mother would) going to panic if he can’t put his feet down on the sand; he would just keep swimming.

“It . . . speaks to the observation that children with autism are very much at peace — very relaxed — in the water,” said Michael Alessandri, a Coral Gables-based clinical professor of psychology and autism expert. “The situation was likely not exacerbated because the child did not panic — did not realize (the) danger he may have been in — and stayed calm.”

Christopher’s mother said he hasn’t shown any signs that he was traumatized.

He suffered multiple jellyfish stings on his legs and has been limping since his rescue, Bishop said. But that hasn’t stopped him.

Christopher jumped right back into the pool.

There’s jellyfish in the ocean at the Jersey shore where we swim. I’ve seen Charlie reach his hand up across his back to scratch himself just as he’s about to dive under a wave; the sting is strugged off.

Nonetheless, what Christopher and Walter Marino endured reminds Jim and me that we have to be even more vigilant when Charlie’s swimming in the ocean, and to be sure to swim near a lifeguard.

If you haven’t read the story on CNN (and also check out MSNBC; thanks, Linda!) of 13-year-old Christopher Marino who treaded water for 15 hours after being caught in a rip tide and swept out to sea eight miles off the coast of Volusia County in Florida—-go here. Christopher and his father, Walter Marino—who treaded water for 12 hours before being found by the Coast Guard—stayed together after darkness fell by calling out phrases from Disney movies:

“To infinity,” Marino shouted, referencing one of Christopher’s favorite lines from the movie “Toy Story.”

“And beyond,” Christopher shouted back, pumping his fist in the air like movie character Buzz Lightyear.

But after an hour, Christopher’s voice faded and his father feared he was gone—-but he was ok, treading the water the whole time.

Jim and I have had Christopher and his father on our minds a lot. As you know, Charlie loves loves the ocean and is a great swimmer, and he often tries to swim out as far as he can—-yes, we’ll always be swimming with the lifeguards on duty!

And just to make the happy ending to Christopher’s and his family’s story even happier:

The one thing Marino knows is that his son still loves the water and that the experience hasn’t taken away that special comfort from him.

“It may be a while before we go back to a beach,” Marino said. “But he still loves the water. He’s already gotten back in a pool.”

And so, on the final night of summer vacation 2008, what did Charlie say but…..

“No school.”

Yes, having made it clear since school ended back in August that he’d rather be in school, the night before the big First Day, Charlie got opening day jitters.

I waved his lunchbox, packed with paper-wrapped chicken (courtesy of PoPo), rice, watermelon, a bagel, and a Capri Sun. “No lunchbox.” “The schoolbus is coming tomorrow,” Jim said cheerily. “No schoolbus.”

“Ok, no schoolbus,” we said. “No schoolbus,” said Charlie and “no school” (just to remind us). “Yeah, no school,” I said with a shrug. “No school,” Charlie repeated, eyes wide and face set. Then I mentioned the speech therapist (who Charlie’s had for over 2 years, ever since he started in our school district), and the OT, and the adapted phys ed teacher, and Charlie’s teacher, and some of the aides (I was a little more careful here, as no one seems to know which aide will be where until the last minute). Charlie repeated their names after me, with no no’s.

Based on this, and what he’s been saying all summer, I do think Charlie will ultimately be glad to be back at school. But then there’s that nervous twinge at the prospect of something new, at a change, at a return to order and to us calling him to get out of bed bright and early (and since Charlie is starting middle school, his bus will be coming an hour earlier). Looking back over the summer, Charlie was not happy initially to be at the beach house, and then decidedly less than thrilled to leave it. And he accommodated himself extremely well to being at the beach and loving it, and—while missing the sand and salt water waves so much it must hurt—Charlie found it wasn’t so bad to be home either. And it’s expressing those contradictory, ambivalent, and in-between feelings—something between yes and no—that’s a challenge of words and of something more.

Plus, on Sunday morning, we went to Surfers Healing at Belmar on the Jersey Shore. We’d heard of Surfers Healing a couple of years ago and been hesitant to participate, as the camps on the East Coast always seemed to fall just around the time Charlie was starting school, and for Charlie to be one day at the beach and the next at the school was too much too fast. So really, it was a huge bit of progress for us to be attending a surf camp, the day before Charlie went back to school.

We had to get him up early after days of sleeping in (till 11, Saturday morning) and Charlie woke up smiling and repeating my “get up, get up!”. After Saturday’s heavy rainfall thanks to Hurricane Hanna, the sun shone brilliantly—–and the waves were high. Repeat that, high, and huge, and tall, and foaming, and straight up and down and not like they usually are on the Jersey Shore. Read the Surfers Healing website:

Special Note- We will be having the surfershealing camp in Belmar but if it is not safe we will not take kids surfing. Please plan on coming we will be having a huge beach party. Thanks.

At 10am, the beach was packed and it would only get more packed with families and umbrellas and beach chairs and beach towels and bags overflowing with swim shoes and suntan lotion and more towels. Charlie had no problems putting on a life vest, lay right down on the surfboard, and went out farther, and farther, and farther over the waves, a stone jetty nearby. We could see him, long legs bent at the knee and the surfer in a black wetsuit kneeling behind him, bobbing and easy in the water.

Quite a few more children, all smaller than Charlie, walked by (some were carried) and got on the boards and went out; a couple stood atop the boards as they came in, the surfer having pulled them up just as they were riding out from a wave. Charlie was out there the longest, saying (as we later learned) “bye” a number of times. Jim and I suspected, he was expressing a wish to just get in the water and do what he always does at the ocean: Swim.

It was a gorgeous day and something to be out there with so many families, and with so many people who shared Charlie’s and our love of being not only by the ocean, but in it. Not every family had been able to get a spot to surf and a lot of people had come simply to be at the beach and join in a beach party with games and music and food, and be part of the day and the sunshine after the storm.

At long last, we saw the surfer turn the board with Charlie on it towards the beach. I got out my camera; my dad was working the camcorder. The wave was big and then the surfer stood up, Charlie still lying on the board, head facing forward like a figurehead on a ship and then Charlie rolled over into the wave and the surfer looked down and had to look back and then went into the wave too.

He emerged with one hand holding onto Charlie who (as Jim and I glanced to each other) had done what came too naturally and gone where he may well have wanted to be the whole time, under and inside the ocean water.

Charlie smiled his way back to the sand, was applauded, removed his life jacket, got his trophy and went to slide his feet in the sand and find lunch. We’d mentioned that “he’s a really good swimmer” but I suspect the only way to fathom Charlie’s swimming ability is to see him in action. And really, what can I say, Charlie was doing it his way.

Back at home, after wonton soup and rice, I laid out Charlie’s gym clothes and the locks and keys for his lockers, and slipped his lunch box into its appointed place in the refrigerator. Charlie, who’s been wrapping his right hand in his shirt and using his left since the end of July (and the end of summer school), used his right hand to unscrew the toothpaste and then carefully brushed his teeth. I was standing beside him and a fast glance in the mirror clearly showed how many inches Charlie has over me, even as I saw and still felt the little 5-year-old, hair damp and eyes shining after a nice warm shower, learning his big head into my shoulder as I tightened my arm around him and adjusted my hip. When Charlie was younger, every night after his shower, I’d towel him off and pick him up and we’d look at our reflection in the mirror, Charlie and mom saying “who’s that?” Sometimes Charlie said some fragment of a word; sometimes he smiled and looked long and hard.

Sunday night I tucked Charlie in and pressed my cheek on his and dimmed the light; five minutes later, Charlie pattered out, grabbed the gym clothes and locks, and placed them near his pillow, and was soon asleep. His Leapster was under his arm.

No one does it like Charlie.

Yes, 15 hours.

That’s how long 13-year-old Chris Marino treaded water eight miles off the coast of Volusia County in Florida, after he and his father, Walter Marino, were swept out to sea Saturday night, First Coast News reports. Walter Marino was rescued by the Coast Guard after treading water for 12 hours. He was dehydrated; Chris Marino’s condition was not immediately known.

“The family said they’re still in shock both father and son survived,” says the First Coast News. It really seems miraculous but, needless to say, I’m very glad to be reporting that Walter and Chris are safe, and back on land. Very.

Labor Day today and everyone seems to be talking “back to school.” I’ve been back to teaching at my college for a week and Jim starts this week. Charlie, however, doesn’t go back to school till next Monday, September the 8th. He perked up on saying “school tomorrow!” yesterday night—I hated to tell him, “one more week.” So if I’m still in sort of vacation mode here for another week, believe me, we’re all just waiting to see the yellow schoolbus pull up next Monday morning.

The reason (or the reason we’re being told) that school is starting late for Charlie is because of “new construction.”" One the projects mentioned a couple of times has been some new classrooms at the high school, including a kitchen and other facilities that would be meant only for special ed students. Our district has been preparing for a larger number of students—more than a few with autism, like Charlie—moving up to the high school and needing pre-vocational training. So assuming that the rooms will be solely for the use of the special ed program, the new construction is very much to Charlie’s benefit.

Yes, though Charlie’s only 11, we’ve already begun to think about vocational training. It’s very early, I know, but based on where Charlie is academically—-reading means working on a few individual words; math is a lot of counting and number recognition (Charlie’s been learning to use a calculator but he’s not yet doing simple arithmetic)—something like college is rather, and even simply, unlikely. A job involving some physical activity would be good; I don’t see Charlie sitting at a desk in front of a computer, but moving around and doing things: Working in a kitchen or something involving food preparation, or cleaning up something (working in a park maybe?). I suspect Charlie will himself indicate where his preferences lie.

No matter what his age or school status, we’ll keep working on reading, writing, and ‘rithmetic with Charlie; whatever age he learns these in is right on time. Charlie is a boy of few words but he notices a lot and, more and more, he makes it his job to tell us.

Sunday being the day before Labor Day with a clear, clear blue sky, we went back to the beach. Charlie’s been saying no to swimming: A chlorinated pool is no ocean, and some of the pools at our YMCA have been closed for maintenance. He did say “yes” to going to the ocean and so down the Parkway we went on Sunday. Charlie’s anxiety reached a high point at the precise place where the same had happened going back to the beach twice earlier this summer and my mom got a big bonk on the nose. We stopped at a rest stop and my mom and I switched places in the car and Charlie’s rapid, nervous verbalizations peaked and then lessened as we neared the ocean.

Charlie ran right into the water. It was warm, and the lifeguards were in ultra-relaxed mode, with swimmers going far beyond the flags before being whistled at. Charlie made his usual headfist forays straight into and under the waves and, a couple of times, headed out to see swimming on his back, headfirst and happily smiling. We swam and swam; other swimmers were worrying about jellyfish but Charlie, occasionally scratching at his back, kept turning back into the waves.

We had dinner at a favorite seafood shack and Charlie, as he’s been doing all summer, ate a roll and went through a bunch of ketchup packets, then ate his lettuce and a Jersey tomato slice when I asked him if he wanted them or not, and some bits of burger. Most of Charlie’s French fries went untouched. Because of being gluten and casein free for so many years, Charlie’s eaten his share of crispy, oily potatoes many times over and it’s ok with me if he turns his nose up at them for newer tastes.

There was some, but not too much, traffic going back home on the Garden State Parkway. Charlie smiled and bantered with me (still in the back seat) about a game called Farm Families that he used to adore and some of his older, long-said-good-bye to toys (”Remember how you used to sleep with the garbage can by your bed?” I asked, at one point). We were three in the backseat with my dad on the left and Charlie on occasion stretched out his legs in the center console of the car and almost moved the gear shift.

After that, he turned his attention to the trunk of our station wagon and said to me, “Yellow boogie board.” Last week, coming back from the beach, he’d pulled out the boogie board and, in the midst of an unhappy beach house rentrée, scratched some deep groves into it. There was n room for a big boogie board in the beack seat and I told Charlie we’d get it out when we got home. He flashed me a look and then squirmed and leaned his head into my arm.

It was past 11pm when we got home. Charlie ran in and as I was pulling out the wet towels and swimsuits, Jim said to me, “You know, I left the yellow board by the showers at the shore—-I was going to rinse it off.”

Think I’m going to have to start telling Charlie to remember to tell me, and us, certain things because he’s not going to forget—-and I think he’ll do a real good job.

Since coming home from the beach on Saturday, Charlie’s seemed more in need of deep pressure, especially on his hands and feet. He’s been twisting his hands into his shirt all summer, and he’s now also burrowing his feet deep within the couch cushions (it’s a soft, blue, quite beat u couch). At night, as ever, he sort of self-swaddles himself all the way down to his feet in his fleece blanket.

He wasn’t doing as much of the hand and feet wrapping while were on vacation and last night it occurred to me that, when we’re at the beach, so many more of Charlie’s sensory needs are readily met. Endless amounts of sand, warm in the sun and squishy lovely wet and what equals the ocean, water in constant motion, cool or warmed, washing up every possible curious delight. Glistening jellyfish; stringy seaweed; sandy foam and waves over your head.

Not easy being beachsick.

Sitting here in my office with one student after another coming in and out the door to try to change their schedules for fall classes and remembering that just last week was Charlie’s surfing lesson, I was pretty pleased to note this film about Clay Marzo, a 19-year-old surfer who has Asperger’s Syndrome. Today’s Star Bulletin has a few more details and the trailer for Just Add Water is here.

Autism and Dolphins, Is There a Connection?—-I’m not inclined to speculate too much, aside from noting that a dolphin is the best metaphor I can find to describe Charlie swimming in the ocean. (As for taking better photos of him swimming—I’d need a camera like this, and hope it can withstand sand, surf, and salt water!)

I mean, what do you expect? We spend two whole weeks in a house with a lovely big open room one block from the ocean (and are able to piggyback on someone’s internet server so Charlie is able to discover the pleasures and perils of YouTube) and (after a very anxious start) fall into a fine routine of late morning and late afternoon ocean swims, punctuated by plenty of beach food (i.e., seafood and fries, though Charlie was not too interested in the latter—a first—but wanted sushi again and again; good thing it’s become a fixture at the Jersey shore along with the crabcakes). We overpacked, meaning that all that I should have packed was three shirts, one pair of shorts, and three swimsuits for Charlie (because he rotated wearing those few items).

A few years ago, Charlie spent the last three days of vacation shouting “No Gong Gong no PoPo” over and over and over. Gong Gong and PoPo are Cantonese for “maternal grandfather” and “maternal grandmother” and are what Charlie calls my parents; he’s extremely fond of them, but had equated their arrival with leaving the beach house, and so shouted himself hoarse. Another year he hid his favorite toys, a stuffed Barney and a toy computer, Alphabert, in a closet and told us “no Barney, no Alphabert” when we asked Charlie where these were. Jim thought to look in a closet and found both toys and we realized the Charlie was hoping that if his favorite toys could not be found, we’d never have to leave.

This year, we made sure that Charlie knew that Saturday would be the last day by talking about it and showing Charlie a calendar on his computer. But the reality of the last day only hit Charlie when he came down the stairs Saturday moring and saw the bags and laundry hampers packed. He insisted on leaving a red boogie board (which was scraped and banged up) at the beachhouse.

Jim and I have a hard time leaving ourselves and, rather than sit on the Garden State Parkway in bumper to bumper traffic with everyone else trying to get home on Saturday afternoon, we’ve often gotten in one last afternoon at the beach with a long walk out on a rock jetty. Charlie took the lead on the walk, moving from one big boulder (some with some big gaps between them) with steady ease, only occasionally pausing and taking Jim’s hand to step over a particularly large distance between rocks. As I watched him, my mind was filled with images of 5-year-old Charlie in his little blue Teva sandals gripping Jim’s hand and sometimes needing to be carried; I recalled our worry about Charlie slipping and falling and here he was, at 11, moving like a billy goat over a rocky mountain.

On the walk back (after one last swim) Charlie remembered that we were, after all, leaving, and started calling out for the beach house and the red boogie board. As we drove away over the bridge, he looked back, saw that his view was blocked with the big yewllow boogie board and a beach chair, and started pushing everything and crying (and somehow the car’s tailgate got loosened and we had to make an emergency stop). The Parkway was not too busy so we got on and he cried, cried, and cried, and a couple of times there were some extra vibrations throughout the car. We suggested taking deep breaths, Charlie wrapped himself in a fleece blanket and called for the beach house, and Jim got off the Parkway and onto a local road which brought us to a gas station offering gas for $3.39 a gallon and Charlie started looking around and stopped crying.

We continued a more gradual transition by visiting a boardwalk where Jim and Charlie rode the swings and a whale-size version of  the Frog Hopper and then Charlie had rice and shrimp and poked at some coleslaw at a picnic table while people fished nearby. We got back on the Parkway and all was peaceful until we were ten minutes from home and Charlie started shouting out his anxiety, again and again calling “beach house!”

And I told him I was glad he was doing this. The memory of a boy unable to express himself and speak is ever fresh. Charlie doesn’t have too many words, and not enough to explain what must be complicated feelings about going to and leaving a place he loves as much as the ocean. But he’s trying and the results are imprecise and not enough, but every year there’s more he can tell us, in his speech and in other ways. With every visit to the beach, Charlie shows how he’s grown over the year.

When we got home, the trunk of the black car (a stationwagon) was stuck and Jim had to lower the back seat and pull everything out. He left the big yellow boogie board and beach chair by the car as he hauled everything else in. At first Charlie ran straight to his bedroom, asked for his yellow blanket, and howled for ten minutes—-then got up, went outside, and carried the boogie board and beach chair inside. When I put the board in the kitchen to get it out of the way in the living room, Charlie set it in the hallway, not far from his bedroom door. Then he poked in the (very empty) refrigerator, told us “good night” and went to bed peacefully, his toy Leapster (which he’d been carrying everywhere while at the beach) beside his pillow.

A rocky voyage home, yes, but I think we’ve come back safely to harbor.