Alex doesn’t seem interested in riding a bike, but lately he’s been eyeing his brother’s scooter. We went to the park last week — Ned and the other kids had scooters, and I didn’t want Alex to feel left out, so I grabbed our new pogo stick (a gift from Grandpa) and handed it to him. Not only did he carry it to the park the whole way (often he starts out holding something and then flags and tries to get me to carry it) but once there he practiced over and over again, trying to stand on it and jump.

Photo courtesy of ndrwfgg (flickr.com)

We frequently have to remind Alex to look where he’s going. Tripping down subway stairs. Careering around a street. If he learned to ride a bike or a scooter, he’d HAVE to watch out and set a course for himself. Fix his inner self on some goal — go THERE — and train his gaze in order to do it. So I’m thrilled at his determination to use the pogo stick. He even tried a scooter for a few minutes, but circled back to the pogo stick.

A couple of summers ago we met the director of Alex’s sleepaway camp, a dynamic woman who said she feels all kinds of movement — including skiing — are terrific for people with developmental disabilities. It’s a kind of self-reliance, she pointed out.

You don’t see many pogo sticks these days, but ours attracted a lot of attention. Kid after kid came up to us in the park and wanted to try it, and our neighbors offered their scooters to Alex in exchange for a turn. He stayed with the pogo stick for about 20 minutes (a long time for him) then used the scooter, went on a tire swing and finally climbed the monkey bars so he could sit with the other kids perched on the very top. He needed just the littlest bit of help to get started, and did the rest himself.

When Charlie was first diagnosed and for many years after, sounds loud or soft, low or high, did not seem to bother him. He was certainly drawn to music but didn’t seem particularly bothered by sirens, loud merry-go-round music, shouts, fire drills. Every time we had to fill out a checklist, or talk to a new teacher or OT, we always shrugged “no, no” about “any sound sensitivities.”

Fast forward to about two years ago, when a motorcycle shot past the black car and suddenly I heard a knocking sound: Charlie knocking his head on the back of the seat and crying.

That was a pretty obvious sign of something about Charlie’s sensitivity to sound. I began to drive with the windows shut (and, on hot days, with the AC fully on). Littly by little, it became apparent that a number of sounds—everything mentioned above—indeed bothered Charlie, who signalled this by sometimes crying out or placing both hands oer his ears.

But was he always seeking to block out sounds? I’d turn on a Barney video on YouTube as Charlie requested, only to see him watching from at least a foot away, hands over ears. Could he not simply be seeking to block out the sounds, but to filter them, screen out some aspects of them?, and to listen better?

We tend to equate hands over the ears with a wish to shut out some sounds when Charlie might be attempting to do precisely the opposite, to listen and hear better.

Just as: Nodding one’s head says “yes” here in the US, but it says “no” in other cultures. Same gesture, very different meanings.

It’s really been about two years that Charlie has seemed so much more sound sensitive and Jim and I think that what might be going on is that Charlie is much more alert and attuned to what’s going on around him, and therefore more in need of filtering out all that stimuli from the world. He’s listening better than ever, that is, and trying to figure out a way to best make sense of it all.

Yesterday, he sat by the side of the swimming pool for 40 minutes: We were at an event we’ve often been to, a swimming hour just for autistic children with numerous friendly high school students volunteering. Desite kindly coaxing from three different kids and Jim and me, Charlie refused to budge until the very end, when he waded in the shallow end and swam slowly to the deep end. Just as he got there, it was announced that it was time to get out. Charlie remained in the pool as it emptied out and the lifeguards replaced the plastic ropes for the lanes, and the very water and air quieted. He stayed there, floating and swimming a bit, in the deep end and middle of the pool, for some 40 more minutes.

Once upon a time, nothing could keep Charlie from jumping (or trying to jump) into a pool as soon as he saw it. Now he likes to think about it and take in what’s going all. No toddler in a tall boy’s body, he’s quite aware of what’s going on; he’s changing all the time.

A 16-year-old starts his own computer consulting and repair business, Hire the Brain—impressive. Today’s Columbia Tribune tells how Collin Driscoll, who has Asperger Syndrome, started his company with his father and, too, how he’s learned to deal with his sound sensitivity.

Several months ago, [Driscoll's] mother convinced him to take a trip by himself to his aunt’s home in Kansas and to help her trucking company fix its computer system. It was a big step for Collin, but he enjoyed it, and at his aunt’s encouragement decided he wanted to start the business with his father, Steve, an IT programmer who formerly worked for large companies but was forced into semi-retirement after suffering a stroke.

“I’ve gone from being the geek to being his driver,” joked Steve Driscoll, who marvels at his son’s ability with computers.

Go here to the webpage of Hire the Brain, which notes “Why pay for the whole squad when all you need is one good brain?”—why, indeed?

I can’t prove it right now, but I’m more and more thinking that Charlie may well have perfect pitch.

Though without a piano or cello teacher (I’ve followed a few leads, but with no luck, yet), Charlie has still been practicing, and has often asked to “play cello” in the later afternoon, before he and I go on our usual walk. Last week, after I took the cello out of its case, a few strums on the strings revealed that it was really out tune. As in, really, the D way way too low, the G unidentifiable, the C low, and loose.

With Charlie saying “play cello,” “play cello,” I turned the pegs, just a bit, but with the memory of how I once broke a string on my viola still fresh, I was very hesitant. Charlie kept asking to play and so I brought the cello over to him and opened the music book. “A, D, D, A,” he sang, perfectly in tune—-and the not-tuned cello was distinctly wrong-sounding. Charlie frowned and kept singing out the notes, in tune, before he plucked the flat-sounding strings.

He kept frowning, and singing the notes, and persevered with the plucking. And when he’d finished and I was wiping the rosin off the strings, I told him we’d bring the cello to the music store to get it tuned.

That was over a week ago. Charlie kept asking to play his instrument, most insistently, and so each night I’d try again to tune it, and just hear the C and G and D as they should be (the A was the only sort of tuned string), and then the pegs slipped no matter what I did. After practicing, we’d go for a walk and then when we got back it seemed late and was dark and Charlie wanted dinner. So it wasn’t until yesterday, Thursday that I put the cello in the trunk of the black car and we drove to the music store.

A young man, his hair as close shaven as Charlie’s and a stud in his ear (and about the same height as Charlie) immediately took the cello and starting working on it. Charlie stood at the counter, eyes wide open under the two hoods (sweatshirt + winter coat). The store has several soundproof rooms for lessons off to one side and there were parents and children, and instruments and racks of music books (A Charlie Brown Christmas! the entire Bastien piano series! sheet music for “In My Life”!) everywhere. Charlie briefly raised his voice, then stood with his hands over his ears. Looking in a rack, I found a beginner’s piano book that had some of the same songs that Charlie’s piano teacher had adapted for him to play and it occurred to me, why not have Charlie learn to play these slightly more complicated versions of songs he already knows?

We left the store with a tuned-up cello and Charlie carrying a new piano book. There were Christmas trees for sale across the parking lot and the piney smell was distinct in the cold air. Adolescent girls walked by us with guitar cases and their mothers calling out, and younger siblings trailing.

Charlie hummed “Winter Wonderland,” all the way home, and every note was in its place.

All That Noise Is Damaging Children’s Hearing, said an article in yesterday’s New York Times—noise from headphones, video games, computers, TVs, “power mowers, leaf blowers, snow blowers, car and house alarms, sirens, motorcycles, Jet Skis, loudspeakers, even movie previews,” not to mention music from weddings, parties, rock concerts………………….

All of which falls rather ironically on my ears since the only reason Charlie is wearing headphones is because he’s become so sound-sensitive and needs to block out noise………………….

One of my students is writing her senior thesis on environmental psychology and classrooms for special needs students. This is the fourth year I’ve known her; she’s an education major and has a special needs sibling, and I’ve long shared stories with her about Charlie and found her a sympathetic and supportive presence. Early yesterday afternoon, she stopped by my office and she asked me a series of questions, as research for her thesis, and I’ve been reflecting on her questions and my answers to them.

What do you worry most about for Charlie?

I’m afraid this one was too easy to answer: A job and a place to live, I said. And paused. I said: What happens to Charlie when we’re gone…….

The other questions evoked less overtly existential sorts of answers from me. We talked about what Charlie’s current classroom looks like; whether I thought that his physical environment had affected him (yes, for sure, I noted); if his teacher and therapists were aware of environmental psychology (of the concepts, yes, but not explicitly, I said); whether I thought that teaching methods or the physical classroom space were more important.

To the last question, I answered emphatically in favor of good teaching methods and good teaching, and good teachers, as being the most important. A classroom can have all the accoutrements, smart boards and computers and the like, but that doesn’t mean the students, all the students, any students will learn. Whether learning at a little blue plastic Little Tykes table in his bedroom in our rented St. Paul duplex or in a public school classroom in New Jersey, it’s the people who’ve made the difference in Charlie’s learning.

And so the interview turned into more of a conversation, with my student and I sharing stories about teaching 7th graders (some of my first, and most formative, teaching experiences were when I was a middle- and high-school Latin teacher in St. Louis). She noted that her students, the boys especially, needed to get up and be in motion, and that sitting at a desk with bells ringing and announcements blaring periodically did not create happy memories in any student. I talked about the effects of no playground and no more recess. Charlie does have gym, and his APE teacher is great at adapting all kinds of sports (basketball now) for his class, but it’s not the same. We talked about proprioceptive input and I mentioned how ever-growing Charlie often doesn’t seem quite sure how to arrange his suddenly longer legs under desks and atop chairs that seem  abruptly smaller.

We could have talked for another hour but, as ever, I had to run out the door to meet Charlie’s schoolbus. As I was packing up my bag, I found myself saying that the topic of adapting and changing the physical environment raised a fundamental question for me: How much to seek to change the environment, the world around Charlie, and how much to seek to teach him to adapt, to change himself?

And, as I opened the door to my car, I noted that I’ve yet no answer.

Eureka! A possible stocking stuffer that combines sensory input with one of Charlie’s preferred foods—edamame—and can be attached to the D-ring on his bookbag and readily squeezed when the noise on the schoolbus gets, well, noisy:

Asovision Edamame

If that seems a little weird (and the price is kinda steep—equivalent to buying a couple of bags of frozen edamame), there’s always virtual bubble wrap.

Corduroy, velvet, denim. Leather, silk, a rock. Bubble wrap, fake fur, burlap. Not a list of supplies for a craft project, but a list of things with different textures—but if you felt each, with your fingers or on the soles of your feet, would they just be so many sensory sensation? Or might one say “security” to you, or one make you agitated, even angry? Does touching certain textures evoke certain emotions in you?

If so, you may have “tactile-emotion synesthesia.” Synesthesia is an “involuntary joining in which the real information of one sense is accompanied by a perception in another sense”; it’s thought to be much more common in the general population than previously thought. Someone with synesthesia might attach certain textures or sounds to numbers or colors, as Daniel Tammet describes in his autobiographical Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant. It’s been found that synesthesia can be auditory (certain sounds are felt, smelled, and so forth).

Here’s today’s Neurophilosophy on work published in the journal Neurocase by researchers at the Center for Brain and Cognition at the University of California, San Diego:

In patient AW, a 22-year-old female, the most vivid emotions are evoked by denim, which causes in her strong feelings of depression and disgust, and silk, which produces feelings of happiness and contentment. Other textures evoked a wide variety of emotions and feelings: when she touched corduroy, AW felt confused; leather aroused feelings of receiving criticism; multicoloured toothpaste made her feel anxious; wax made her feel embarrassed; tylenol gel caps made her feel jealous; and different grades of sand paper made her feel either guilt, relief, or as if she was telling a white lie. In patient HS, a 20-year-old female, the same textures often evoked different feelings. She felt no real emotion when touching denim but was disgusted instead by the texture of fleece and wax; corduroy made her feel disappointed; bok choy made her feel irritated, but smooth metal made her feel sedated and calm. In this subject, the strongest emotion was evoked when she touched soft leather, which made her feel extremely scared - she described the sensation as “making my spine crawl.”

Charlie’s always been drawn to things based on color and shape and also—as we later noted—texture. When younger, he seemed to prefer toys (blocks, puzzles, beads) made of wood, rather than plastic (ok sometimes, but much more rarely) and metal (never an interest). As I’ve often noted, he (and we) have become a bit dependent on polarfleece in the form of jackets, vests, gloves, hats, and blankets. Light cotton t-shirts and pants made from some kind of cotton-based material with not too many fasteners are pretty much what Charlie wears day in and day out, along with a dark blue hooded sweatshirt—a long time since we’ve bothered with knit sweaters for him and forget the potential slipperiness of polyester. While Charlie seems quite uninterested in drawing or coloring or painting with a brush, we’ve been noticing that when he can touch the materials—-clay or putty—he’s been quite motivated.

Kind of gives the phrase “how are you feeling” a whole new dimension.

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.

Saying “a lot happened” in the past two weeks kind of seems like an understatement.

• The Search for Certainty (or, why we’re going to the dentist at 3.15pm)
  An emergency dentist visit for Charlie prompts me to think about why parents so often try to find medical reasons for why something’s going on.
• David Kirby exonerates thimerosal
  Maybe not exactly but the day may be coming……
• Today Show Today on Autism and Vaccines
  I’m briefly interviewed on a feature about vaccines and Dr. Paul Offit.
• A “Crusade Against Autism”—-To What End?
  Do we really need such a “crusade”? . Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good.
• The Great Now What
  Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.
• Positively Autistic on CBC News
  A recent CBC News special feature, Positively Autistic, says that “since the early 90’s, an autistic rights movement has sprung up, challenging the official view of autism and working to change how the world sees autism.”
• If It’s Raining, There’s More Autism?
  Another study from Michael Waldman, who wrote an earlier paper about TV causing autism.
• Pop Pop Redux
  A post about the Mugen Pop Pop Blueberry written on Election Night,
• What does it mean to lose an autism diagnosis?
  Does losing a diagnosis mean that one is “cured” of autism?
• Sensory Differences: Research at IMFAR 2008
  Should sensory processing differences be part of the criteria for autism?
• Robert Kennedy, Jr., and the EPA?
  RFK Jr. is under consideration by President-Elect Barack Obama to head the EPA?—Not good if you care about science.
• “Strange” Play As a Marker for Autism in Infants?
  Unusual use of toys in infancy a clue to later autism, according to a stuy published in the October issue of Autism, the journal of the National Autistic Society.
• Adolescence: Not easy, but no need to end it
  Newt Gingrich argues that we should do away with adolescence.
• New Theory About Autism and Genetics
  A new theory argues that arents’ genes are “in competition.”
• Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis?
  Rod Welford, the education minister of Queensland (Australia), attributes the rise in autism prevalence in his state to parents in search of more services for their children—-not.
• Looks Like the Special Needs Mommy Wars Aren’t Over
  is Sarah Palin a potential leader for working mothers of special needs children?
• The Value of Money (the real stuff)
  Charlie learns to count money in the age of the ATM card.