Our summer plan calls for water parks.

Image: Spakattack, flickr.com

We still don’t know how Alex will react to not going to day camp. Much more important than the cost of savings was that Alex has always seemed to enjoy few parts of camp. Camp theme days seemed to leave him cold. He’d often get out of the pool before swimming was over; he’d spend a lot of arts and crafts period running from light switch to light switch in the cabin; he seemed okay with concept of baseball, but always wanted to carry around the ball, bat, and glove (they are, after all, a set). The staff was great, the camp lush and lovely, and his shadowing counselor was, I think, his first crush. But all he ever seemed to like at camp was Flying Squirrel, a bungee-like contraption that bounced kids high in the air.

He seems to love school, however, and sped summer school in New York is a lot of play and recess anyway. Surely he’ll be okay with that (even though three years ago he cried on the first day of summer school)? I do wish we could ask him, but as usual with semi-verbal Alex it’s a matter of guesswork, watching sharply for clues, then probably getting it all wrong anyway.

He sits on the couch and silently flips through last summer’s camp scrapbook. “Summer school this year, Alex,” I say. “You’ll go to school and we’ll do stuff on the weekends.”

Coney Island’s water flume was always a favorite. Alex’s rec programs have also gone to water parks (so did day camp, occasionally). He would sit patiently in the front of the big log boat and wait for the heart stopping drop and tidal wave splash at ride’s end. A whole park of such rides should ease the pain of no Flying Squirrel.

Our plan calls also for zoos, beaches and seaports of Connecticut and Rhode Island, fire museums. Maybe we’ll even run him out to Sesame Place and watch his little mind be blown by a 6-foot Elmo.

“Alex, school this summer.”

“School,” he says, flipping the pages of the scrapbook.

***

See these options and tips for summer travel and vacations with people with autism.

We get Alex up for school at 6:15. I do this four days a week, and Jill sleeps in a bit before she has to rise to get Ned ready for school. So I’m alone with Alex.
I have stuff to do for my day, plus make sure he gets dressed and brushes his teeth and gets his stuff together. (First I have to make sure he stays awake, as he’s often up in the middle of the night, and 0615 comes early.) One thing I like to do is empty the clean dishwasher so Jill doesn’t have to do it.

So I’m just about done with the previous night’s dinner plates and the spoons when I notice that I haven’t heard anything from Alex for a few moments. “Alex?” Nothing. “ALEX?!” Nothing. I hear water running from the bathroom.

I go in. There is Alex. The toilet is overflowing. There’s almost an inch of water on the floor.

He says nothing. He isn’t giggling. He looks at me.

His toilet training – and believe me I know how lucky we are – went splendidly from the moment Jill took it upon herself to decide, “Now’s the time!” Someone has also taught Alex to use toilet paper. A lot of it.

“Jill, get up! I need a hand this morning!!”

She got Alex dressed and stuff while I mopped. And mopped, all the time wishing he could’ve called out for me, or bragged about it (who hasn’t wondered how a toilet would react if you put almost a whole roll of paper down it?), or even just giggled.

Punishment?

“For a first time offense, I would react by having Alex assist in the clean up,” offered fellow LinkedIn autism poster Jennifer Merritt. “Perhaps explaining more about what toilets are used for, and why it is important that we don’t stuff them. If your son is interested, provide an anatomy lesson of toilets, identifying the key parts of the toilet and the functions they provide. Perhaps one solution would be to limit the amount of toilet paper available to the child, and also showing him how much is the correct amount. Being curious is natural, all kids put one thing or another down the toilet just to see what happens. If it were to happen on multiple occasions, then perhaps a punishment would be in order, but I would not worry to much about it for the first offense. Correct, instruct, and be done with it.”

My thoughts exactly. He learned to handle a mop, and we got our bathroom floor clean. Floods haven’t been repeated, and in fact lately Alex shows more drive than Ned when it comes to helping with other chores, like setting the table and putting groceries away.

I’ve found the autism groups of LinkedIn great places to ask advice and find help. My LinkedIn autism groups – and there are many others – include Autism Awareness, Autism Advocacy, Autism Speaks, Autism Help, and Linked to Autism. Jennifer has also started another cool one: Cookbook 4 Autism Speaks.

How did 5-year-old Colum Canning fall into a pool at a Disneyland Paris hotel during a Christmas trip? Colum, who was autistic, was discovered in the pool by another guest, who pulled him out; he had already lost consciousess when he was taken to a hospital, where he died, today’s SkyNews reports.

Colum was just a typical wee boy who was so happy, so loving and so full of energy,

said Colum’s parents, Karen Canning and David Bradley of Derry, in a statement, and may he be remembered just like that.

While it’s often frustrating trying to find some time at our YMCA pool for Charlie to swim in—-because, in the late afternoon and evening, the pools are primarily for the use of the numerous swim teams—-on Wednesday night, Charlie and I found ourselves by the “family pool,” with its water slides and 3 1/2 foot pool. He had asked to swim and then gotten his swimsuit on. At the pool, his eyes drifted towards the big pool. It was filled with lines of teenagers swimming up and down and up and down and (as I had done in the car en route to the YMCA), I carefully explained why we would not be able to swim in that pool.

Charlie sat on a bench for a few minutes with his head down, before taking off shoes, socks, blue coat, and blue sweatshirt. At the far end of the pool we saw some of the lifeguards we knew from swimming in the big pool in the summer and fall. One lifeguard—she just got her teaching degree and is still looking for a position—waved and called out that she was doing some sort of water safety training: Another lifeguard (who’s a very conscientious pool manager, and also recognizes Charlie) was holding onto a backboard; after a moment, another dunked himself under.

Feet dangling in the water, Charlie sat a few feet from them and watched, and didn’t move for several minutes. He watched as each lifeguard took turns pretending to be drowning the water and be lifted up, strapped onto the body board, and their head secured. Aside from two boys, the elder a few years younger than Charlie, no one was in the pool and soon Charlie slid in and started splashing and gliding and grinning his way up and down the water.

The elder boy stood still for a moment, eyes on Charlie. He said something, though I couldn’t hear with the noise of the water and the coaches calling out instructions and all the other noise and voices. Charlie kicked his way down to the shallower end and when the other boy, eyes still on Charlie, was closer to the edge, I mentioned “autism.”

“What’s that?”said the boy.

I’ve never done a great job answering this question to children—always seems like I’ve so and too much to say, and too many words come out. I mentioned, and as quickly explained, “neurological.” The boy listened, looked at Charlie, said “ok” and swam off.

Charlie remained relaxed and swam again near the lifeguards, always staying carefully out of their way. The other boy and his brother went up and down on the slides and splashed and swam, often passing close to Charlie and he to them.

“How did he get it?” the boy suddenly asked me. “How do you get autism?”

“He was born with it,” I said.

“Oh,” said the boy, and paused, and swam.

We stayed for about 40 minutes total, and then Charlie climbed the stairs and I picked up the coats and his shoes and we went to the family locker room, to shower and get dressed and head back home, after swimming in good company.

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.

Just as there is the Amber Alert for abducted children, should there be an “Autism Alert” when an autistic child is missing? The parents of Kaitlyn Bacile—-who, in September, was found drowned in a canal near her home —-think so, as reported in today’s WSVN (Florida):

While it’s too late for Kaitlyn, her parents hope some good can come from their tragedy.

Jay Bacile: “We want Kaitlyn’s life not to go in vain, at the very minimum we want to raise awareness. We just want her memory to live on and do good because that’s what Kaitlyn was, was pure goodness.

WSVN notes that current programs designed to report that autistic children are missing are “not being used consistently”:

The “Take Me Home” program supplies police with pictures and information of at-risk kids.

But of the 271 law enforcement agencies in Florida, only 41 use it. “A Child is Missing” is a national emergency system which can put out 1000 alert calls in one minute to a neighborhood where a child goes missing.

Claudia Corrigan, ACIM. “It’s important to get these calls out there immediately, and we can do it. You have a small window of time it’s a two to three hour and even then, if there’s water nearby it’s very very tough.”

The service is free to police, but they don’t always use it. Finally, only 37 police departments in Florida have picked up a program called project lifesaver.

Wristbands allow rescuers to track the person wearing it, but it puts the burden on parents to pay for a $300 bracelet. And most autistic children have sensory issues and won’t wear them.

Tina Brea: “This is a child that cannot communicate, that cannot understand the simple commands that others their age can. So any attention that can be brought to this the better.”

What would be the best way to spread the word, as quickly as possible, that a child is missing?

20-year-old Alvin Troub and his 8-year-old brother, Michael Runyon, have been missing since Sunday, when they went fishing along the Willamette River near Independence, Oregon, KTVB reports. The river is reported to be running “very high” and there are concerns about the boys’ safety—-hope they are all right and found soon.

Last June, 10-year-old Jon Jon Jackson died while taking a nap after being in the pool of the apartment complex where he lived for about 45 minutes. The cause of his death was determined to be “asphyxiation due to drowning.” His mother, Cassandra Jackson, spoke nationally about the dangers of secondary drowning, which is a secondary injury caused to the lung when even a small amount of water (a teaspoon) gets in the lungs. Jon Jon had attention deficit disorder and autism.

Today, The Post and Courier (Charleston) reported that a family friend, Saquan Meekins, has been charged with homicide by child abuse:

An investigator’s affidavit accuses Meekins of holding the youngster underwater at the deep end of the pool. Unnamed witnesses told police that he made statements to the effect of, “‘You’re going to learn how to swim, one way or the other,’” while directing profanity at the boy.

They described Jon Jon trying to stay above the water, grabbing floating objects, as Meekins kept throwing him back in. At one point, they recalled the boy saying, “I want to live; I don’t want to die.” Meekins, they asserted, replied with something like, “that’s what happens when you don’t try to swim.”

Jackson said her son, who was developmentally disabled and had a condition similar to mild autism, often made dramatic statements. Someone who didn’t know him, she said, could have taken the comment about dying out of context.

The charges against Meekins carry a possible prison sentence of 10 years to life.

Yes, I overparent.

It often seems to me that it’s harder than not to do this when you’ve a child with a disability. In yesterday’s Arizona Daily Star Johanna Eubanks writes about the ongoing difficulties that she, and other mothers of autistic children, have to take time for themselves; to take care of themselves.

Of course, there are marked differences in the overparenting I’m talking about, and the “helicopter”/”hothouse”/”death-grip” parenting parents who aim every effort from pregnancy on to making sure their child will be material for the Ivies as described by Joan Acocella in the November 17th New Yorker. Overparenting is kind of a way of life around here, whether in directing your every energy to taking care of a disabled son whose communication skills are—-while better with each day—-minimal and not always verbal; in writing daily emails to his teacher to explain all the things that he doesn’t; in strategizing how to spend another long afternoon together in a (hopefully) at least semi-productive way.

Again, I’m not sure I could adequately take care of Charlie without being over-scrupulous, closely considering (if not obsessing) about minute details of his education, health, reactions to food and things that happen, sounds, the weather. Like many parents, I simply feel strange and always keep turning around, keep listening for a certain warbler voice, when Charlie is not with me, as if I’ve developed a sixth sense, a radar, that hones in immediately to where he is and how far or near.

One of the few places where I’m able to let that high-intensity parenting state subside a bit is when Charlie’s in the pool. Wednesday afternoon, we’d first gone bowling and—it was just past 5.30pm—-it was already totally dark. Soon after we’d gotten home, Charlie appeared from his room in his swimsuit and told me, with a smile, “black car.” The only other personswimming in the double-laned family/free swim section of the YMCA pool was an adolescent girl who was doing partial laps of freestroke and backstroke while her mother gave suggestions from a bench.

Jim’s often said that Charlie’s safer in the water than on land and this just seems to be more and more true. While I used to have to tail Charlie (so he wouldn’t swim into the lanes where people were doing laps), I usually go about my own business of swimming laps. Charlie likes to take his time to get into the pool and then (of course, there’s always lifeguards watching) do his own thing. So I go up and down and up and down the pool while he’s ducking under the water, backfloating, swimming half the length of the pool in no time at all, all with a kind of effortlessness in his movements.

Charlie’s not swimming to practice for any competitions. We swim because we like to. Further, the fact that I can swim is, perhaps, a by-product of (over)parenting Charlie. Before Charlie, I hated swimming and was terrified of being in water over my head. Because of Charlie, I learned to swim in the indoor pool of the town we used to live in. Thanks to Charlie, I can do something, swimming, that I spent the better part of my life avoiding and fearing and that I now not only enjoy, but thrive on.

Maybe it’s ironic, but the pool is, indeed, the one place where I’m not the over-parent, but just another person in the water.

We won’t be jumping in these abandoned pools any time soon—-this one is in a “modernist mental institution“—-more than glad I am able to take Charlie to our YMCA pool to swim with everyone else.