Thanks to all who sent the kind birthday regards. My birthday coincided with the last day of classes at my college and the morning was packed with review sessions prior to exams and a couple of phone calls about matters that needed to be figured out by today (meaning Wednesday, i.e., yesterday) and some missing files of a rather important nature. (Two found, one still missing.) At 11am a student came in to talk about her graduate school applications; she had a bag lined in red tissue paper (a little soggy from the rain) and gave it to me. Inside was a hardcover version of my Latin textbook.

Since I first taught my student Elementary Latin four years ago, I’ve been through three or four paperback versions of the book. The cover inevitably gets ripped off and the book’s spine splits, and the corners get ruffled and ripped, and a couple of pages fall out and become occasional bookmarks. So having a much more durable hardback book should help. But getting one was something I just would never have done on my own. I have plenty of (worn and weary) copies of the textbook and I know some students struggle just to pay for their book. I can’t say how grateful I felt that my student had noted all this, and helped me out.

I’ve worked for most of Charlie’s life and while the demands of a job certainly make things more harried and add to the stress, I’ve also gained a lot of support from mycolleagues and students. Jim and I are in a constant conversation about Charlie and autism and much else; we both also agree that having “other interests” (here’s a longstanding one of Jim’s) and reaching out to others, both those who have a connection to autism and those who don’t, has been essential.

Jim’s schedule changed much in the past few years and he can be home more, but when we first moved back to New Jersey in 2001 with half of a job for the three of us, he had to work much longer hours, plus we lived in central New Jersey and Jim was working in the Bronx. Charlie and I spent a lot of time with just the two of us, and those were the days when I couldn’t go grocery shopping with him. Soon as I turned my back, Charlie’d be opening a container of something and eating. I initially started blogging in June 2005 on a hot June day when Charlie was floundering in a summer school program (that was not at all “appropriate“) and I was scheming about how we were going to pass a long afternoon when even the playground was off limits, the slides scorching hot under the sun.

The internet’s a rich, unregulated, and sprawling source of information, about autism and therapies and treatments and who knows what. I’ve found it to be as much a source of community, especially as a parent isolated by circumstances and grateful for support and help from someone out there, anywhere. First there was email for me and then blogging and now there’s been the rise of all the “social networking sites.”

Ive been very excited that one of my sister mom-bloggers, Bonnie Sayers, has organized Autism Twitter Day for next Tuesday, December 16th. Here’s what it’s about (via Left Brain/Right Brain; also see the autism group on Twitter, via I Speak of Dreams):

Autism Twitter Day – Tuesday, Dec 16th pacific standard time – 9AM, 12:30 PM and 8 PM. Prizes will be given out and a panel will be available with information and to answer questions.

This is open to twitter members, specifically those who are members of the autism community, whether it be a parent, sibling or relative. If you are on the spectrum you are welcome to take part. Most of the prizes are geared to children and young adults with autism or asperger syndrome.

The hashtag to be used for autism twitter day is #ASD. This means when you post a tweet that day which is on the topic of autism – positive autism awareness, please use the hashtag, either in front or at end of the tweet. Open up a window at www.summize.com and input #ASD to follow along with the conversation at the specified times. Most likely they will run longer than one hour. Stay tuned here and to my blog for prize and panel info.

We will be testing your knowledge on autism spectrum disorders, this is how the prizes will be awarded.

Bonnie has assembled an ever-growing collection of prizes, ranging from a children’s hammock (Charlie is too big for this, I suspect) to software to storytime felt sets. I’m not a big Twitter-er (my Twitter id is autismvox) but will be sure to be Twitter-ing on December 16th, and I don’t think I’ll be alone.

I certainly wasn’t for my birthday. We had dinner at a diner a couple of towns over, Jim and Charlie on one side of a booth and me opposite, and then it was home and opening presents and my guys were (as always) very nice to me, though I didn’t get anything on the order of the Autism Twitter Day prizes likes Mary’s Gone Crackers or a hardback version of my ancient Greek textbook.

I’m on the train to Washington D.C., to attend a meeting of the Interagency Autism Coordinating Committee, which coordinates efforts concerning autism within the US Department of Health and Human Research. There’s a list of the federal and non-federal members of the IACC here; the committee has been overseeing the writing of the Strategic Plan for Autism Spectrum Disorders (ASD) Research. Over the past year, there have been numerous calls for input from “stakeholders”—from anyone concerned about autism—and other meetings of the IACC and of workgroups concerning various parts of the plan.

I went to an IACC meeting just about a year ago and read this statement. While I wrote up and sent in a statement for today’s meeting, there apparently is not space on the agenda for me to read it at the meeting, though I was told that copies of my statement will be included in folders given to the members of the committee. I emphasized the need to focus on research that can directly affect and improve the lives of autistic individuals here, now and today, and on the need to provide education and services for autistic individuals in the community, and that integration and inclusion are not goals to be aimed at, but simply essential.

Time and again in the past years raising Charlie, we’ve more than once heard the suggestion (sometimes a very strongly put suggestion) that Charlie be sent “out,” as in to an “out of district” school placement, where he would be very much outside the community, the people, that he lives in. While we have in the past been interested in Charlie attending a private autism school where all the teaching might be geared towards kids with his sorts of learning profile, I really think that he would lose something if he were not in daily (if limited) contact with kids his age, in a setting that kids his age are generally in.

At the moment, this setting is middle school. I visited Charlie’s classroom on Monday: It’s a well-ordered environment. Charlie uses a schedule broken down into a series of small binders throughout the day. There’s photos, small phrases, and Language Master cards velcro’d to the pages, and he knows to get the different binders and work through the pages.

The physical environment of his classroom is more, what shall I say, institutional-seeming than last year—he’s in a lower-ceilinged room with windows that look out onto a hallway, across from a small courtyard—generally, it’s the whole middle school (with some 1400 students) that seems more “institutional-seeming.” It’s a huge 70s-ish building with lots of shades of brown, all on one level, and without the aesthetic attributes of the town’s high school and elementary schools. It is, indeed, a middle school, playgroundless and the first step towards some kind of adulthood not only for Charlie and his three classmates, but also for every other student at the school. There was a fire drill when I visited. The 1400 students plus many, many teachers and staff all streamed out and stood in neatly ordered rows before streaming back in. Uncertainty, simple bafflement, the wish to run and loll about on the grass, yawns—-these were all to be seen in many of the students.

I thought of Charlie’s struggle to accommodate himself to getting up earlier and to a much earlier start to his school day. Seeing the while middle school out on the grass together, dutifully and somberly lined in rows for a fire drill, many pretending not to shiver in short sleeves though they’d been told to get their coats, it occurred to me that Charlie’s not alone in feeling a sort of loss and puzzlement at finding himself in a bigger setting, and with so many more expectations and demands placed on him. And yet—-

And yet, back when I was just starting to teach (before Charlie was born), I taught Latin at a private school in St. Louis, Missouri. I taught both middle and high school students and was surprised to discover that that 7th and 8th graders seemed so often the most eager to learn, the most determined to know every miniscule thing about third declension i-stem adjectives; the most curious, intellectually and otherwise. And, the most uncertain, insecure, and defiantly confused about anything social (and, of course, involving the opposite sex).

Charlie’s different in ways small and profound from his peers. He doesn’t have homeroom as he stays in one classroom; he doesn’t have science or social studies and he’s not in his first year of learning a foreign language. But he is one among many other kids in our town; he’s not hidden away, and he’s not at all forgotten.

And I guess it’s to make sure that he and kids and individuals like him are never forgotten, segregated, or give second or worse-class treatment, that I took the 5.46am train to Washington, D.C.

Go here to see the agenda for the November 21st meeting.

Autism myths abound and Kev is collecting, and dissecting, them at this new site. One myth that especailly irks me is the notion that autistic kids are “in their own world” and “withdrawn into themselves” and, generally, “out of it.”

My son Charlie is thoroughly engaged in and attuned to the goings-on of the world all around him. He may not look like he is, and he often does no respond in the usual ways that people are accustomed, to indicate social awareness. Due to his limited language, people tend to assume, or too quickly assume, that he does not understand what is said to him.

But never underestimate how carefully someone, and someone who doesn’t have the “usual,” “expected” responses, might be tuning in.

It’s apparent to everyone—Jim and me, Charlie’s teachers and therapists—that he has a lot of feeling about the arrival and departure of my parents, aka “Gong Gong” and “PoPo” (that’s the Cantonese for “maternal grandfather” and “maternal grandmother”). Charlie gets visibly, thoroughly anxious a couple of days before they visit, in the middle of their visit (as he senses that they’ll be departing at some point), the day before they leave, and the day of their departure. He’s less in control of his nerves, one could say, and generally on edge.

This is painful for Charlie, and for everyone (and certainly my parents who are regular readers here). We all spend a fair amount of time strategizing about how to help Charlie deal with so many feelings, with anxiety, joy, anticipation, happiness; with a host of contradictory feelings that are all mixed up and experienced at once. We’ve tried photos and picture schedules but sometimes those set Charlie even more on edge. I usually try to mention that my parents are coming and going in a rather casual, nonchalant manner, in the course of a general conversation about things, in the hope that it’ll sounds like a routine occurrence, and so be felt more like that by Charlie.

Charlie gave my parents an enthuasiastic and smiley send-off Monday night. He’d gotten a buzzcut at the barber and my parents had take photos of his new ‘do; my mom made vegetable soup and paper-wrapped chicken and Charlie played the piano with brio. He said good-bye, went straight to bed on Monday, and woke early on Tuesday, and got himself ready for the bus. His teacher wrote that he was agitated getting off the bus and had one tough moment in the morning, and then was finishing off a great rest of the day when something seized him just as he was to get onto the bus. He sat for almost five minutes in his seat as I stood in the parking lot and then Charlie ran out, visibly unhappy. I followed him into our condo and he sat in the black chair by the window for 45 minutes with shoes and coat on and—I guess the word would be—-moped.

Then he got up and took his lunchbox out of his bookbag, told me what he’d done at school, and went to find his Leapsters in his room.

The rest of the day was properly boring and routine. We went for our usual walk, well-bundled up and with Charlie slushing through piles of leaves, and then to the grocery store. Last week, the store had lost its electricity earlier in the day and had to throw out many refrigerated and frozen items, including Charlie’s latest favorite, vegetarian egg rolls. The bins were properly well-stocked Tuesday afternoon and he filled a basket and contemplated, and ultimately turned down, some hot dogs. We went home, ate, did a homework sheet, and I recorded hic haec hoc.

Charlie was talking in the background of my first attempts. After the second, he started repeating what I’d said (”hic, haec, hoc, huius…….“). When I tried out the podcast I’d uploaded, he came right over to my laptop and stood listening with a smile.

All while saying, hic, haec, hoc, hu……...

“Figuring out his signs, it’s like watching a third-base coach.”

Says Brian Rattner about his oldest son, Jarrett, who is 13 years old and does not talk or walk. An October 23rd New York Times article describes Jarrett’s bar mitzvah last Sunday, and how his parents came to focus on “who Jarrett was and what he could do”:

When he wanted a ball, he would pound his chest until he got it. “Sometimes, he wants to communicate so badly, you can hear him from the other room pounding his chest,” Mr. Rattner said. “There’s a lot of emotion there.”

He is good at making eye contact, and his mother noticed that if she asked what he wanted for lunch — turkey? tuna? chicken? — he would say yes by blinking his eyes and then holding them closed an extra second.”

Hence, that need to learn to “read the signs” like a third-base coach—-something Jim and I have tried to do to understand how to communicate with Charlie on his terms, in the language he’s trying to teach us.

Senior Matt Farag has a “zest for learning,” today’s Gatehouse News Service Reports. Diagnosed at 6 with autism, Matt

…..will browse the encyclopedia and history books in his St. Charles home, memorizing notable facts and dates on history, dinosaurs and insects. Matt also can name each of the presidents and vice presidents in order and their middle names.

My son Charlie doesn’t do this—-reading’s been a long-time challenge for him—-but he too has a deep-running “zest for learning.” The word “student” comes from the Latin studere, “to be eager, to have zeal”—-and no better example of true students than Matt and Charlie, if I may say so.

Yesterday’s Pathophilia reviews a group of studies (two by Mark and David Geier) about testosterone levels in autistic children. Pathophilia finds that testoterone is not increased in autistic children.

The Cambridge-based Autism Research Centre is also researching hormones in autistic individuals. The Foetal testosterone Longitudinal Study seeks to find out whether elevated levels of foetal testosterone are associated with a later diagnosis of autism spectrum conditions. The Current hormones Project is looking at whether current hormone levels might also be atypical in autism and Asperger Syndrome. And another project is looking specifically at puberty.

Yes, as you may have guessed, I’ve got puberty—so to speak—on my mind.

Charlie’s 11 (and five months, to be precise) and he has definitely entered this new stage of development. He must have shot up some 3 inches over the summer; no pair of long pants really seems to fit him, and Jim’s trying to figure out the best moment to use the electric shaver. Charlie is in middle school—-6th grade, as he IEP notes—-and he is the youngest student in his class, and the tallest. Growth spurts, growing pains, the whole puberty thing. I tend to read most about autism and special needs and neurological disorders and the like, but lately I’ve been throwing in a lot more reading about adolescence in boys.

The mornings have become chilly and it’s still dark when the alarm goes off. Consequently, getting out from under the cocoon warmth of a big fleece blanket has been less and less easy for Charlie, and more and more jarring. Charlie usually snoozes off on the bus and then has to go through a second wake-up and, some days, he’s fallen asleep at school and just can’t wake up.

My very mundane guess about this is that adolescence, with its physical and so many other changes, is proving to be hard and laborious for Charlie. I’m not surprised—when Charlie was a baby, it seemed always to take some sort of extra effort for him to roll over, sit up, scoot, stand. He was nearing 16 months when he started to walk. Talking—and much else—-started ever so slowly for Charlie.

And it’s looking like his passage through the stages of adolescence will be equally slow, full of one setback after another, and just so hard. I still remember when Charlie was about 15 months in daycare and trying, trying, to get on his feet. He didn’t talk at all then and Jim and I felt both a strange wonder mixed with misgiving to hear a girl who was not yet three speak in paragraphs, it seemed, and every other child run, skip, and hurry around, while Charlie carefully made his way across the floor.

Charlie has been quite aware of his own tiredness. For the past few notes he has, on his own initiative, taken himself to bed just after 8.30pm. He still takes melatonin (he tends to get hyper at night) and he usually does not fall asleep for a half-hour plus. These past two nights, I’ve sensed that he just wants to go lie down with his blankets and Leapsters in bed and, I don’t know, stare at the ceiling. He still tucks his hands behind his head for comfort, just how his hands and arms were when he was born. Saturday and Sunday, we’ve been glad that Charlie has no activities he needs to wake up for, and he sometimes wakes up around 7.30 and then is back to sleep till 11.30.

If you could see what a lean, lanky, leggy “long tall drink of water” as Jim sometimes says, that Charlie is growing into, it doesn’t seem surprising that he would be so fatigued. All that growing seems to be consuming vast amounts of Charlie’s energy. Coupled with the greater demands of being in middle school, it’s been a whole new world.

I have been reading Ovid’s Metamorphoses with my mythology class. Ovid opens his long poem by writing of “forms changed into new bodies“: In story after story about the nymph Daphne turned into the laurel tree, of Echo become only her voice among the rocks and Narcissus a flower, of Philomela turned into the nightingale, Ovid subtly make clear, metamorphosis hurts. Daphne’s skin becomes bark, her hair twigs and leaves, her feet grow down into the ground. All is changed and, it’s hoped, some new beauty is born.

And the growing pains—it’s hoped they rise and fade, and rise and ebb.

So on Wednesday morning it was chaos in our house. Only for about 15 minutes, but any minutes of Not Fun is Not a Great Way to Start the Day. Charlie had woken early and got up and smiled and wanted a shirt; he was pulling it on backwards (it’s an Oakland A’s t-shirt with numbers on both sides) and I gestured wordlessly to turn it around and his eyes clouded and he made a low noise. I stepped away and then heard thump cry and the chaos ensued.

But I don’t mean the chaos of a crowd of a massive throng of humanity in a crowded space and someone yells “fire.” Chaos is from the ancient Greek word chaos, which means a “gaping [hole],” an emptiness, a vast void. Really, chaos is what I feel when Charlie has a tough moment: Things happen both quickly and slowly as someone darts for a pillow and someone stays with Charlie and there’s ice and crying. As a parent, you just want to help your child and things happen and you feel your can try your everything-est, and still something kaka—that’s ancient Greek for “bad things”—happens.

Wasn’t the end of it, either.

Charlie stayed with my parents—-as I’ve said too much, he starts school next Monday—-and I dropped off Jim at the train and headed to Jersey City where I was supposed to meet a student at 8.30am, which did not happen because, due to being distracted by the latest chaos, the string of back to back classes and appointments on my calendar, and being in the third day of, how shall I put it, losing most of my electrolytes whenever I attempted to eat anything, I missed my turn-off to Routes 1 & 9 North and the Pulaski Skyway and found myself heading towards the toll, and then signs that said “Lincoln Tunnel” and “George Washington Bridge.”

Believe me, I was in no state to find myself driving into midtown Manhattan Wednesday morning. (Quizzes tomorrow in both elementary Latin and Greek classes and we needed to get ready.)

Jim had shown me an alternate route that would take me over the Route 1 & 9 truck bridge but what exit off the Turnpike? 15B? The sign said Exits 15F-15H or some such, where was 15B…..

15F turned out to be correct, as indicated by the sign proclaiming Jersey City and the steel arches of the Skyway rising straight across from me across the reeds and steel containers and concrete roadways and cars (moving and rusting, and still) that populate the Meadowlands. Jim called me back as I was getting onto the truck bridge and I was only 15 minutes late to meet the student, and a beat-up yellow schoolbus was only partially blocking  where I park so I could get my car in.

The day spun off from there. We went over the present tense of verbs in Latin class and the I drilled the Greek alphabet in my Greek class, read Virgil with more advanced students, sorted out schedules for students panicking because the last day to drop/add classes draws nigh (it’s today), fielded phone calls and explained how to register for the GRE, had a really lovely talk with a student about things that are very important to me and (as I learned) to her, talked about how to write personal statements to a law school-bound student—-got into my car to go home early to have dinner with my parents and Charlie (who’s had a very nice day with a trip to the aquarium) while Jim worked late and learned about new plans for the student newspaper, backed my car out (the street is a one-way going down on a slope) with one student offering to keep an eye on traffic——stood behind Charlie to practice piano—-

Let chaos come; at least the idea of order returns again.

As of this Wednesday, the fall semester is underway at my college and I’m explaining how to pronounce v as w in Latin to one class, and leading another in reciting and writing the 24 letters of the Greek alphabet. I’m teaching early in the morning thanks to Charlie being in middle school, which starts much earlier than his elementary school. I’m a quite energetic teacher, a necessary feature (I think) if you’re going to instruct college students in “dead languages” with complicated grammatical systems. At some point, some student’s attention will seem to waver, as indicated by eyes focused out the window rather than on the dry erase board, by a student saying “huh” when I call on their name.

I used to just think, ok, this student’s not absorbing anything—-not paying attention. Then I had Charlie, Charlie was diagnosed with autism, we started to figure out that he needed to be taught in very specific ways, and some, oh, 8-plus years of teaching Charlie ensued; some 8-plus years of me learning and relearning, students learn in different ways. Indeed, students show they’re focused and paying attention in different ways: It’s not every student who’s going to be sitting up straight in her or his seat, eyes on the dry erase board and book open. Certainly, I’ve time and again realized that Charlie is more than aware of what’s going on around him and of what’s being said, even when his body posture and eyes looking to the side and head down would suggest he’s not.

Yesterday’s Science Daily reports on a new study in the August 28th Neuron, Subliminal Instrumental Conditioning Demonstrated in the Human Brain:

“Humans frequently invoke an argument that their intuition can result in a better decision than conscious reasoning,” says lead author Dr. Mathias Pessiglione from the Wellcome Trust Centre for Neuroimaging at the University College London. “Such assertions may rely on subconscious associative learning between subliminal signals present in a given situation and choice outcomes.” For instance, a seasoned poker player may play more successfully because of a learned association between monetary outcomes and subliminal behavioral manifestations of their opponents.

Researchers used functional magnetic imaging to study the brain circuitry associated with subliminal learning—learning occurring without the brain consciously processing contextual clues. It was found that, even when the brain does not consciously process such clues, “subjects nonetheless developed a significant propensity to choose cues” that were paired and associated with monetary rewards, even when the cues were abstract and could not be seen. As the abstract to the study notes, “even without conscious processing of contextual cues, our brain can learn their reward value and use them to provide a bias on decision making.”

Regarding being conscious or not while trying to learn something: So often Charlie has said a sentence, a word, 100%-plus clearly once, or sight-read a piece on the piano; when asked to say the same thing again or play a few measures again, he is, more often than not, unable to do what he just did. It’s as if, when he’s consciously trying to do something (and particularly something that he has not mastered, or that is new), some “interference” ensures and the words are garbled, he hits the wrong notes. Charlie often does best on the first attempt and without being too aware that he’s trying when, perhaps, he’s relying on intuition. He knows when the pressure is on for him to do something—to perform.

For all that eye contact may be overrated, college students do need to learn to look up, look people in the eye, and speak clearly and sufficiently loudly to be heard, and Charlie too, at times. But perhaps there’s more than one way of showing you’re interested and listening, and being there.

My college students are performing Cabaret and tonight Charlie and I went to see it. For the past month, Charlie has been doing something he has never done before, putting his hands over his ears when the radio is on in the car and when he hears human voices that are too loud or high-pitched. So I was not sure if bringing Charlie to a musical was the best idea.

We sat down in the back row and Charlie said hello to the athletics director (at my prompting) and then “no” to shaking hands with the chair of the history department. There were musicians on stage and when they started playing, up went Charlie’s hands; the same happened when there was dialogue and for most of the singing (especially when two female students sang in high girlish voices) and when the drums played. Only at the mellower voice of the student playing the lead role of Sally Bowles, did Charlie put down his hands, and then up they went again when the talking began.

At first I thought we should leave but Charlie did not ask to go. When a group of people sat in front of us, he craned his neck to follow the actors, and his eyes intently followed an ensemble of dancing figures moving around the stage. And in the scene when Sally Bowles entered the room of the young American writer Clifford Bradshaw and said, “Can I get you a drink?”, Charlie beside me said “Yes, green drink.”

“Audience” is from the Latin word for “hear, listen,” audire. Even with his hands over his ears, Charlie was definitely doing his part as a member of the audience, totally tuning in.

Yes—what with the poll over at Larry King Live asking if you believe that vaccines cause or contribute to autism; and the CNN report tonight; and the fact that all I had to do while standing in line at the store with two bottles of melatonin, sushi and watermelon for Charlie, and my eco-friendly “carry your own bag” shopping bag was to turn around and behold! there was the headline “David Kirby on Autism and Vaccines” on the cover of Mothering magazine—-once again this blog, which is an autism blog, is in danger of becoming a vaccine blog, as you can see from recent past posts. For the record, I voted “NO” in the Larry King poll and I have to say that “yes” there will be more posts here about vaccines, which, one can say, have become linked in the public imagination with autism.

Me, when I hear the word vaccine, my mind flips back inextricably to a certain 7th grade boy who was, once upon a time, in my Beginning Latin class at a certain prep school in the suburbs of St. Louis, Missouri. This student was quick and—perhaps being a 7th grade boy—ADD-ish, or rather ADHD-ish: pencils, or pens, or gel pens, or fingers, or the covers of Ecce Romani! (Behold the Romans!) were always a tap-tapping on his desk and he played the same with words. “Equus is horse, Magistra Chew, so what’s cat? mouse? goat? pig is a porcus like pork and Porky Pig!” (That made the class laugh, and me too.) “What about cow, does a cow say ‘moo’ in Latin, Magistra Chew—-does a vacca moo?”

And vacca is the root word for vaccine—–and now I have my own perpetual motion machine of a boy.

Charlie’s been rubbing at his nose and coughing a bit, but so far (so far!) does not seem to have the dastardly illness I am kind of pulling myself out of. He did only eat half his lunch and, on a walk, dawdled and stamped at the dead leaves in the mud. We walked up a slight hill one way and then back down to go home, and on the return trip Charlie started to go a bit ahead. As he approached the curb, a car was coming from the left with headlights on: Charlie stopped at the curb, turned his head to the left, and looked back at me. He waited.

Ecce!

The driver kindly honked and gestured that we should go and Charlie winced and scrunched up his face. We walked home with me thinking that the program to cross the street (he’s been learning this at school) is working. At a busier street, Charlie again stopped and turned his head to the left and noted two cars pass by. Then we crossed together.

We’re far, far, from Charlie crossing the street by himself and maybe that won’t ever happen—one step at a time,  and always careful to look and listen (both ways) and to stop and start again.

(And since I’m in Latin-mode, “cow moos” would be vacca mugit.)