So you know how we made sure to have a very lowkey Thanksgiving and also to keep things real simple and understated for Charlie’s birthday, a holiday involving days off from school and an event that has been known to cause Charlie some serious consternation? In 2008, both of these days passed well and quietly for us, largely because we strove to make them Super No Big Deal in the biggest way.

So you think I’d have applied the same tried and true formula to Christmas and New Year’s.

Granted, since we take a 3000 mile airplane trip from New Jersey to California, and (as we traveled on Christmas Eve day, due to Charlie’s having his last day of school on December 23rd) no sooner had we landed and gotten to my parents’ house then we all got into a rented minivan and drove a couple hours out to the Sacramento area to my uncle’s—-due to this, Charlie was doing a lot more (energy-wise, social-wise, transition-wise) in one extremely long day than he often does in a week. The next day, being Christmas, meant that we went to the cemetery, then lunch in Chinatown, then relatives came over, then we went up to my aunt’s house—-and the next day, one of my relatives invited us and several family members out to a big Chinese dinner—-and then the next day, we took, or rather attempted to take, Charlie to Target, only this Target was one he’d never been too and was in a two-story building with mod-metallic-architecture—–

You get the picture. It was totally newness and super over-sensory overload, with a couple dashes of lots of food of a rather rich, holiday feast nature, and several switches from this activity to that event and the result was:

A very big stomachache, in a literal and figurative sense, leading to literal and figurative headaches and some rather erratic moments when Jim and I found ourselves flying after, and flinging ourselves (again, literally and figuratively) upon our boy.

We’ve been saying “nope” to social engagements (with the exception of a lovely afternoon of conversation and camaraderie with friends and their super great kids and a very attractive trampoline; Jim spent the day hiking with Charlie and walking him all over the neighborhoods around my parents’ house); have been all suddenly aware of how many echoes and sounds my parents’ house (it has all hardwood floors) resonates with, and also the height of the ceilings in some of the rooms and the way the space is sectioned up; have been adding up all the greasy sweet (gluten-free, actually, but greasy nonetheless) treats Charlie ate too much of the first two days; have been noting, yes, he is still sleeping in the little single bed my parents bought for him when he was, oh, a toddler. We’ve been making sure that Charlie does all the things he knows how to do at home—setting the table, stripping the sheets off his bed, carrying bags—out here.

And, I appropriated my mom’s calendar and x’d out the days of December that have passed, and pointed out the date we’ll be back in New Jersey. It’s actually a calendar that I made for her (courtesy of iPhoto software). Charlie looked at the boxes with the x’s and then started to turn the pages of the calendar. I pointed out shots of him sitting in the black chair he always slumps in after school; the cheap and study IKEA carpet that never seems to be crumb-free; the kitchen in our condo where he gleefully chomped on half a watermelon; and, of course, the ocean where he surfed and boogie-boarded last summer. Charlie’s eyes brightened up at all this.

No place like home for the holidays.

Made it through Thanksgiving; did some holiday shopping from the comfort of home (and here’s some gift suggestions); time to get back on the school bus!

• Autism and Schizophrenia: The Same “Disease”?
  According to the latest theory, “an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways.”
• Girls and Getting a Diagnosis
  Are girls and women sometimes not diagnosed as being on the autism spectrum because they do not have the same symptoms as boys and men do?
• Denis Leary Tries (Tries) to Defend Himself
  Contrary to what he said a few weeks ago, Denis Leary doesn’t seem to be so sorry after all about what he said
• Nicotine Addiction and Autism
  While studying drug abuse and addiction, researchers at the Ohio State University College of Medicine have found a link between nicotine addiction and autism.
• Mandatory Autism Registry in NJ Proposed
  NJ health care professionals will be required to report those diagnosed with autism at any time from the day they were born through their 21st birthday.
• Increased Use of Antipsychotics in Children (and Young Children) Criticized
  More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger.
• Teacher Suspended For Letting Students Vote Alex Barton Out of Her Class
  Florida teacher Wendy Portillo—who allowed her kindergarten class to vote on whether or not their classmate Alex Barton could remain in class—-has been suspended without pay for a year.
• Off to the IACC
  I attend a meeting of attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research.
• A Wish To Be in the Brownies
  In Wisconsin, after one visit to Girl Scout Brownie troop for girls with special needs in Oconomowoc, the troop’s leaders told 8-year-old Magi Klages’ parents not to bring her back.
• Looking For Autism’s Causes At Home
  MARBLES stands for Markers of Autism Risk in Babies—Learning Early Signs and investigates “biological and environmental triggers that children are exposed to prenatally and post-partum.”
• Refrigerator Mothers, Warrior Mothers: One and the Same?
  Is the “warrior mother” not—as proclaimed in the Warrior Mothers book put together by Jenny McCarthy—the opposite of the “refrigerator mother” of the previous generation, but rather her “distorted mirror image”?
• 28-year-old woman’s death under investigation
  The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for much much more was more than made apparent at the IACC—the November 10th death of 28-year-old Tara O’Leary highlights just how pressing these needs are.
• Something Else to Be Thankful For
  I’m thankful everyday to be Charlie’s mother.
• What’s In Your Library?
  What books about autism are in your library?
• Measles Aren’t Going Away, They’re On the Rise
  1049 cases of measles have been reported in England and Wales so far this year, the highest number in 13 years and exceeding the number on 2007, when there were 990 case

Actually, that title should read, “It’s just like I thought it would be,” as said by Jim. It was Saturday night and we were having dinner at a restaurant on Mott Street, in Chinatown in New York. We’d avoided the whole Black Friday business/madness and decided also to avoid the crowds going to see the Christmas tree on Rockefeller Plaza near Radio City Music Hall. We’d spent the day around home, with a late breakfast and midday nap for Charlie, and then a bike ride. And then, we drove to Jersey City and took the PATH train into the World Trade Center site—there’s construction going on all the time and you can see some of it—-and then walked past City Hall and into Chinatown.

Charlie had said no to any snacks, even after an hour-long bike ride, so intent was he for “Chinese food” and “white rice.” I ordered him shrimp chow fun—wide and soft rice noodles—and he sat on the edge of his seat, head turned back towards the kitchen where waiters kept emerging with bowls of steaming this or that. An order of gai lan came first, and dumplings, and shrimp sautéed with vegetables. Jim and I picked up our chopsticks and I put a shrimp and some carrots on Charlie’s plate, which he ignored.

He kept looking, and looking, and the waiters kept bringing out more steaming bowls destined for other tables. Two bowls of rice appeared and Charlie said “no” to them, and went back to looking for his chow fun. It finally appeared, though only briefly, as Charlie ate it quickly and efficiently, and topped it off with two fortune cookies (I gave him mine), and a total of six fortunes (because each cookie had three).

We walked home fast back to the PATH station and then  to the black car. Once home, Charlie said “school bus!”—-his internal clock that says that it’s two days off (i.e., Thanksgiving and the day after) and then back to school was fully in operation. He was expectantly crestfallen when I told him he had two more days—the actual weekend—and maybe that disturbance in the usual way of things was what kept him up till 1am.

We all slept in on Saturday, which was not the best thing to do as Jim was planning for him and Charlie to take to see a basketball game (Seton Hall vs. University of Delaware) with Charlie’s godfather at the Prudential Center in Newark. They had to catch a train at 11:54 AM and Charlie was just stirring at 11:20. We coaxed, we set out his clothes, we mentioned getting to see Uncle Mike, we mentioned the train……..I dropped Jim and Charlie off at 11:53 and saw them running up onto the train platform just as the train pulled in.

Charlie wanted to bring his two Leapsters but Jim suspected that no electronics might be allowed in the Prudential Center. We’d explained this to Charlie, and he left them on the black car’s back seat and sat through more than half of the game (the Hall eeked out a win), much of it with Uncle Mike while Jim went to the concessions stands (Charlie made some requests for extra ketchup). They took the train home and Jim called me (working on my book and much appreciating the “time to myself”) to get out the bikes. As soon as Charlie saw them, he came inside and requested his helmet.

As the weather’s gotten colder, Jim has added some cold weather gear in the form of gloves and spandex skull caps that go over their ears (he got two of each in the same size, one for him and one for Charlie). Charlie pulled on his cap and gloves and then the helmet, and they were off on what turned out to be a really long ride, as requested by Charlie.

“Sometimes he goes so fast, it’s not so easy to keep up with him!” Jim said after he and Charlie came back. And then, “It’s great. I just try to keep up.”

Me too, for sure.

Did Thanksgiving and now full speed ahead into December with all of its festivities, plus a few extras. Today is “Black Friday” here in the US, formerly known as “the day after Thanksgiving when people line up at 5am to charge the stores to get super-special-deal-discounts on holiday purchases”—as you probably guessed, we didn’t hit any malls with Charlie in tow. He has a general aversion to shopping for clothes, electronics, and anything in the closed confines of the modern mall. Once upon a time, we went to malls with pretty much the sole intent of walking around for exercise on a cold winter day, with the promise of escalator and elevator rides. Charlie’s interest—desire—to ride the likes of those has waned (and, too, some rather painful memories of dragging a very unhappy boy away from the down escalator, which he wanted to go up on).

Fortunately, there’s cyber-shopping, and no need to drag Charlie on any shopping expeditions. A lot of the bloggers at b5media have put together gift guides and I’ve included the list at the end of this post (just click where it says “read more”). I haven’t put together a guide of “stuff” that’s appealed to Charlie (and that he’s actually liked and used……) but I might, could, if anyone’s interested………. here is one suggestion:

Can I Sit With You Too? is the second collection of stories from the Can I Sit With You? project, which gathers together tales from the “stormy social seas of the schoolyard.” Here’s the book blurb:

These new tales represent an even wider range of schoolyard experiences, including best friend disappointments, new kid fears, harsh discrimination, living with disabilities, and emerging sexuality. By sharing moments from kindergarten through high school, these stories once again remind us that we are not alone: chances are, if it happened to you, it happened to someone else, too. The Can I Sit With You? project has been featured on NPR, and in live shows and readings from Seattle’s Annex Theatre to the San Francisco Bay Area’s Book Passage. Proceeds from this book benefit SEPTAR, the Special Education PTA that Jennifer Byde Myers and Shannon Des Roches Rosa helped found in 2007.

As related, we had an incredibly quiet Thanksgiving with just the three of us. We used to go to the club where Jim’s aunt, Aunt Joan, was a member; she passed away, very suddenly, last June; she was happy, well-loved, liked, and regarded, and she’s more than missed. Thanksgiving at that club would not be the same without her ushering us in and sitting down with some white wine beside her husband.

The club was a challenging place for Charlie to be; he had to get all dressed up and after he ate, there was never much for him to do (or, rather, never much that would have been considered “appropriate” for him to do), and his whole day would be thrown off because of eating “dinner” at 3 o’clock in the afternoon. People—and no one more than Jim’s aunt, whose oldest son is severely disabled—were understanding but I guess difficult, awkward moments in social settings still feel, well, difficult and awkward.

Shannon Des Roches Rosa recently posted about helping peers understand our kids’ social challenges and some of what she notes might be helpful to mention to others—relatives, family friends—too, especially at a time of year when there tend to be more social gatherings, parties, and other “holiday cheer” (that often doesn’t feel so cheerful). I’ll just quote some bullet points from the post:

• Don’t to give up on [kids with social challenges]
• Don’t ignore them
• Make them listen to you sometimes!

I’d also suggest, we should listen to kids and those with social challenges all the time, however they’re communicating, with words and without.

And in regard to holiday gifts—just today I found and carefully refolded the silk Christmas tree scarf Aunt Joan gave me in a drawer, and thank her always for some very wonderful memories.

Read more

Patternicity.

It’s a term that refers to “the tendency to find meaningful patterns in meaningless noise,” as noted by Michael Shermer in the November Scientific American:

Traditionally, scientists have treated patternicity as an error in cognition. A type I error, or a false positive, is believing something is real when it is not (finding a nonexistent pattern). A type II error, or a false negative, is not believing something is real when it is (not recognizing a real pattern—call it “apatternicity”).

However, as Shermer notes, we don’t have a “Baloney Detection Network in the brain to distinguish between true and false patterns”—-patternicity does seem to be at work when it comes to theories of autism causation. There’s no doubt that some believe that a vaccine really caused their child to be come autistic (a “type I error, or a false positive”), and, too, there seem to be many who don’t believe that there really is evidence refuting a vaccine-autism link (and who do not recognize a real pattern—who are exhibiting “appatternicity”). Shermer cites a paper in the the October Proceedings of the Royal Society B “The Evolution of Superstitious and Superstition-like Behaviour,” by Harvard University biologist Kevin R. Foster and University of Helsinki biologist Hanna Kokko. They draw on evolutionary biology to demonstrate that

whenever the cost of believing a false pattern is real is less than the cost of not believing a real pattern, natural selection will favor patternicity.

Belief in the false pattern of “vaccines cause autism” persists because the “cost” of believing this is more readily grasped, you might say, requires less of certain efforts, than the alternative. There’s a deep-set tendency in us to find, to have meaning, in whatever the world presents to us; to be superstitious (if not a bit paranoid); to see causal associations just because something happens after something else; to assign cause to effect incorrectly.

Lest this seem merely to be yet another “vaccines don’t cause autism” post, I’m tacking on an account of our Thanksgiving and, yes, patternicity.

Patternicity seems another way to explain Charlie’s need to create order, in placing his shoes with the socks inside them perfectly lined up together; in packing his lunch box with a Capri Sun, 4 small plastic containers, and bags of carrots and grapes when he gets home from school; in arranging his CDs on the floor of his room just so. When Charlie was younger, if we so much as moved one shoe or colored block, his agitation was broadcast far, wide, and loudly. These days he’s easy-going if anything gets moved and sometimes leaves it askew, sometimes restores his order.

Charlie having some extra days off from school, I’ve figured that his need for order—for ways to mark and structure the days—increases. He spent a lot of Thursday (aside from loafing on the couch and going on an hour-long bike ride with Jim on a cold afternoon) in his room, trying to stick all the CDs into his old paper pumpkin trick-or-treat bag. There are way too many CDs to fit into the bag and Charlie did not let this deter him from trying to cram them all in with the result that that bag kept splitting and, in the midst of pumpkin pie baking and general Thanksgiving food preparations, I heard the cry of “I need help!” a couple of times.

The pumpkin bag was literally bursting at its seams when I went into Charlie’s room. With three kinds of tape—Scotch, masking, and duct—I tried to patch together the ripped side and the jagged places where CD corners had poked through the candy corn design. Charlie watched me intently and occasionally offered very long pieces of Scotch tape that he’d cut with scissors. At one point, I tried to tape a piece of a brown paper shopping bag onto the pumpkin bag, to make it bigger so all the CDs would actually fit.

“No, no,” was Charlie’s immediate response at my attempt to graft a piece of one bag onto another. Well, of course: What does a piece of brown paper bag have to do with an increasingly dilapidated paper pumpkin trick or treat bag? To tape one onto the other would be to disrupt the order of things—to upset the pattern—-and the cost was too high.

After I’d taped the bag together, I returned to Thanksgiving dinner preparations (now why is it that Americans feel a need to eat a specific menu of turkey, potatoes, cranberry sauce, pumpkin pie?) and Charlie returned to his CD-ordering-and-reordering. When we called Charlie to eat the turkey, we heard “help, fix”: When I went into his room, I beheld the pumpkin bag, so recently, carefully, taped back to wholeness, packed full of CDs with one side ripped open and flapping around.

Apparently there’s a new order to understand here.

Ignoring the advice of those Martha Stewart-ish types who preach the gospel of “thou shalt get the shopping done early in the week before the actual national holiday hits, Charlie and I went to the store at 6pm on Wednesday night. The aisles were crowded and, while Charlie at one point started pushing the cart on his own, I took over.

As it’s just going to be the three of us for Thanksgiving —- and only one of us really has a hankering for turkey—we got a turkey breast, small and compact, and walked past the freezer bins with 10- and 12- pound birds.

Well, I think Charlie’s not that into turkey, based on previous years. Sometimes, change happens overnight, seemingly. How else to account for why Charlie said “no” to everything in the sushi section, including the Vietnamese spring rolls neatly packed with peanut sauce to glistening pack on pack of California rolls and more?

We did spend a lot of time in the bakery section. Charlie seems to like, or need, to examine everything more or less. He did find his latest preference, brownies with chocolate frosting. Then he looked some more and cast his eyes upward to something at the very top of the bins. “Burger, I want,” he told me.

I glanced in the direction of his eyes: The top row of bins was all for cookies of various types. “What would you like?” I asked. “Burger,” said Charlie. “Please.” He opened the clear plastic door and reached up to the top bin which, in his case, was quite easy to reach. The plastic bin contained Snickerdoodles and, sure enough, the pale sweet discs, their tops sprinkled with cinnamon, bore just enough of a resemblance to (ham)burger buns.

Charlie took four and ate one after a simple dinner consisting mostly of his long-term stand-by and comfort food, white rice cooked in a pot. He spent the evening ordering and re-ordering his CDs and watching me try to tape an old trick-or-treat bag back together. It had gotten elaborately ripped due to him trying to shove too many CD cases into it. I had a grandiose plan of attaching half of the bottom of a brown paper bag to the trick-or-treat bag to fix and expand it, but Charlie—seeing what i was intending—told me “no,” clear and simple. He placed as many CDs as he could in the raggedy frame of the old trick-or-treat (complete with pumpkin) bag and told me “bye”: Charlie’s been letting us know, of late, when he wants to have time to himself; when he wants to be left alone.

Unlike when he was younger, Charlie does not require “constant supervision.” Certainly we need to be around. I think he’ll let us know.

Happy Thanksgiving to all!