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.

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.

What a week—–I guess that is kind of an understatement. There was a new, and frustratingly improbable theory of autism causation: Rain. The Times Online reminds us that, as has often been said, a correlation does not mean you’ve got a cause and notes that there’s indeed doubt as to “whether the paper deserved to be published and reported.” The line of reasoning followed by the paper’s author, Michael Waldman of the Johnson School at Cornell University is that living in a wetter climate leads children to stay inside more, and to be exposed to less sunlight and so produce less Vitamin D, and to spend more time on indoor activities such as watching TV—and to become autisitic.

Theorizing that TV might cause autism was the topic of an earlier paper by Prof. Waldman that relied as much on correlations and associations. I wrote to Prof. Waldman about his TV-autism theory back in October of 2006. The TV theory made especially little sense in our household because we don’t have a TV and, when we did, Charlie was not one to watch it, beyond certain favorite videos. Indeed, Charlie’s preferred activity is to be outside, pacing or roaming, preferably on a day with a clear blue sky and lots of sunshine. He is, though, pretty tolerant of rain and when it’s not too heavy—misting—-he doesn’t seem to care at all. This is obviously a correlation, but I’d say he’s more focused and calmed and at ease for being outside (mist or rain).

Anyways, as we have no TV, we weren’t able to sit in front of it to watch the results of the US Presidential election pour in (I did not mean that as a pun) on Tuesday night. Jim went to the gym and watched TV there and I flitted around between every major news website I could think of; Charlie was sound asleep, after a good day at school, a log walk (in misty conditions), and a potentially disappointing visit to the grocery store because they’d lost their power and almost all refrigerated and frozen items had had to be tossed, and Charlie was unable to find the usual items (vegetarian egg rolls and mini carrots, among others) that he favors.

You know what happened in the election, and then before you know it there’s been a brouhaha about the suggestion that Robert F. Kennedy, Jr., might be considered to head the EPA—-seems not a week can go by without a certain theory of autism causation pushing its way into the public discussion (and onto this blog). Turning to the topic I prefer to devote my energies to (despite what may seem to be the case), it seems that Colin Powell has been mentioned as a possible education secretary.

On which note—-it’s the annual convention for the New Jersey Education Association and Charlie (a student in NJ’s public schools for most of the past 7 years) has had Thursday and Friday off (hence a much appreciated grandparents visit). And while preoccupied with everything previously noted in this post, guiding Charlie (who made his Monday lunch after school on Wednesday) through a smoother, or reasonably smooth, long weekend has been the main business around here. He’s spent a fair amount of time shopping for new pants (this growth spurt thing just won’t let off), hanging with my parents and using an old computer. I took him for a long swim on Thursday night, Jim did a 12-mile biker ride, and we all went out for Spanish food afterwards.

Correlation between all that and a quite peaceful easy-feeling boy?

If you choose to see it that way…………..

The “rainfall causes autism?” study is garnering its share of media attention, as in this article, Study links autism and wet weather, in the San Jose Mercury News (which is curiously, or appropriately titled, depending on your views about mercury and autism).

But what about the correlation more than a few parents have noted about how their autistic children seem to become increasingly unsettled as the barometric pressure falls and the humidity rises; as a rainstorm, and especially a thunderstorm, is brewing? As the weather changes?

A study to be released today in the November Archives of Pediatric and Adolescent Medicine, reports on a link between high levels of rainfall and increased rates of autism. From the LA Times blog, Booster Shots:

Cornell University economist Michael Waldman found that in areas of California, Oregon and Washington that experienced high levels of rain and snowfall during the years 1987-2001, autism rates among school-aged children rose when measured in 2005. Those children diagnosed with autism would have been under 3 during the periods of high precipitation, the period during which autism is generally diagnosed.

There was mention of a precipitation-autism link in 2006, in Prof. Waldman’s study on TV causing autism—more on that finding (which was, may I say, received with many grains of salt) is here.

And it may help to remember, that correlation does not equal causation.

Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds—–that’s the unofficial creed of the US Postal Service, courtesy of the ancient Greek historian Herodotus. I was thinking of it today while Charlie, with the wind picking up and a few drops of moisture fluttering around in the air, ran to get his bike.

He’d woken at 7.30, and ran around while Jim and I called out that we’d be “up soon.” Charlie waited on the couch, peering out the window, while Jim got him his favorite weekend breakfast at the (very excellent) local bagel store. After that, with the sky getting not only gray but dark, I mentioned a bike ride and Charlie first got his bike, then his helmet, and then came back inside and asked for Jim’s helmet.

It was nowhere to be found and Charlie was frowning as he pushed his bike out to the street. He likes his routines, but Charlie can be a lot more flexible than might be thought and off he and Jim (helmetless) went. I figured that the rain would start after a short while and kept expecting a call from Jim to meet them but they were gone almost 2 hours. Jim noted that he’d kept them riding in the vicinity of the train station of the next town over so they could duck into it for cover, but they didn’t have to. Instead, they explored some different and new streets and neighborhoods, with a stop at a 7-11 on the way back.

“Yellow rice!” Charlie was calling for this as he kicked down his bike’s kickstand. Jim had been talking about going out to dinner at a certain Spanish restaurant that serves a very nice paella; he noted that Charlie had turned down the offer a Golden Arches fast food lunch. It was only 2pm and, while talking about his dinner plans, Charlie fell sound asleep on the couch. Biking in a strong wind, with rain imminent and the sky all gray, can tire you out, and it was a 2-plus hour nap. (He wasn’t the only one who dozed off.)

Jim went out for a fast ride around the block at 5pm; Charlie got up slowly, grabbed his helmet, and asked again for Jim’s, and suddenly I sighted it, at the side of a table (piled high with numerous other items). Charlie ran out and gave Jim the helmet and pushed his bike into the street. It took a few seconds for Charlie to swing his left leg over the seat and to pull himself onto the bike, then off he and Jim went, just for a few spins round the corner, before the rain picked up.

The rain was coming down and, as we drove in the black car to the Spanish restaurant, it was hard to see out the windows. We made it, Charlie grinning hugely, and hungrily—-he scraped the metal bowl to get the last of the paella.

Neither snow nor rain nor heat nor gloom of night stays this family from our appointed bike-riding and rice-eating rounds…….

Hoodies banned at some NJ schools, the September 12th NJ.com reported.

Fortunately, not Charlie’s school: What would one do without a soft blue hood to pull over one’s ears and head, whatever the weather? And now that it’s gotten fall crisp and cool, a hooded sweatshirt isn’t just fashion, it’s necessary, especially while waiting for the schoolbus on a misty morning.

We’ve gotten Charlie a new blue hooded sweatshirt as the sleeves on the one he wore up till July are now “bracelet length” on him. The new sweatshirt’s big and floppy and not quite the right fit. But a little room to grow into is good too.

A glass half-full or half-empty?

A big awful mess of a mess on the carpet as yet another episode in the comedy of one’s life, or further evidence of the tragedy of life with autism?

Mirth or melancholy? (To put it a little more poetically.)

Mamma Mia! or Dark Knight—-the one (as characterized in the July 27th New York Times) a “sing-along cinematic travel brochure that set a box-office record last weekend for the opening of a musical” full of many a “peppy Abba song” in which heroine gets guy in the end, and the other a “bomb-a-minute postmodern comic-book spectacle from the Batman franchise” that can be described as “dysphoric” and rife with many a “malign word that [issuing] from that smeary rictus on the face of Batman’s nemesis.”

The title of the New York Times op-ed is Pick Your Poison, Dark or Light; the op-ed is about two hit summer movies which project decidedly different world views.

And often it seems that depictions of life raising an autistic child, of being autistic, and of autism itself fall into one “camp” or other. It’s terrible awful, a nightmare without end, and you wish to cure the living daylights out of a child. Or: There’s a world of things one would never have known had one not had such a lovely, different child, and learned to accept this different, unexpected life.

It’s not easy living with autism, not easy being disabled. Parents can’t help but to worry about their children, but when your child is disabled and will very likely not be able to be “independent” in so many ways, the fear can set in and things can look, can be, really really dark.

Just last night Jim was speaking to an old friend, who said something to the effect of, so was there a chance that Charlie might snap out of it. “It,” being autism. “Charlie’s Charlie,” Jim responded: This friend and his wife saw Charlie in the, yes, dark days when Charlie’ just been diagnosed. They had come to visit us at the beach and Charlie had just woken up from a nap and ran up and down the deck screaming, looking through the slats of the railing. That was an agonizing vacation in which family and friends showed up with a kind of dutifulness and sighed and spoke nervously, and after which one dear friend (who’d tried everything he could think of to get Charlie to play and engage with him) went home and to see his mother and wept.

We went down again to that beach on Sunday. While it was sunny and warm on Saturday, and Charlie looked ready to swim up and down the shore for quite a long time if he had to, on Sunday the sky was gray and black; rain came down in buckets and hail; puddles were mini-lagoons. We had gone down to see friends and Charlie insisted on staying in their driveway, eyes on the ocean a short walk away. At first we stood in the car port and talked and then, when it was only sprinkling a little, a small party ventured out, Charlie leading the way.

It was windy and wet and the sand felt like gritty clay. Charlie took off his blue sweatshirt and shirt and hovered beside the water, and everyone started smiling. Our friends had been sitting in their rented house for most of the day, sad that the storms kept them from enjoying the beach and unsure of venturing out in the rain. And while the beach under a dark sky is not a spot to bask and loll, it’s still something to see and be in, and we were all happier and energized as we walked back, and they thanked us for getting them out.

Both dark and light; not just dark and not just light; but some deeply, richly hued mix.

“School tomorrow!” Charlie told me with his best grin this morning. He’d slept in, had breakfast around 11, practiced cello with a little coaxing. His internal clock is ticking away: Two days off and it tells him, that was the weekend, back to school. Imagine if everyone preferred to go without long weekends and always have that five-day workweek, no complaints.

Off to find some rides and maybe some fireworks, if the rain allows…….

A lovely 97 degrees here in New Jersey today and Charlie just requested to swim in the big pool at my college (ABC filmed him swimming some in this pool last Monday and I hope some of the footage makes it on the segment to be shown tomorrow, Tuesday). If you can’t get to a pool, here are some really cool pools courtesy of Oobject—-something about that underground pool is looking really appealing as the sun beats down (not a great day to have a black car!).

(Then again—-today 12 year-old Connor Folkertsma fells into the rain-swollen waters of the Indian Mill Creek in Walker, Michigan, and was swept out of sight; he was seen getting out of the water about a third of a mile downstream, after the Grand Rapids Fire Department had been dispatched, MLive.com reports. Connor, who has autism, “likes to watch the waters and they were especially intriguing after a weekend of heavy rains turned the normally knee-deep waters into a swift-moving stream high enough to go over the head of an adult.”)