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.

The first thing I have to say about being at BlogHer was that, because I didn’t have to keep looking for a boy at my back (not that I didn’t sometimes turn and scan the room for him; it’s a reflex)—-because I was on my own, I got a chance to look at some things a little more.

I got in at the San Francisco Airport mid-Friday morning and took BART, and was briefly disoriented. When I growing up, BART ended at Daly City, not the airport, and went to Fremont, Concord, or Richmond. Now it goes out to Pittsburg/Bay Point and Millbrae and to Dublin/Pleasanton, places not unfamiliar to me but not familiar as BART stops. As I waited for the train, I remembered how, with my sister and father and Yeh-Yeh, my grandfather, we all took a ride on BART when it opened—a ride to nowhere in particular—and how my sister and I chewed a pack of orange gum and every time the flavor ran out, I asked for another piece.

The conference hotel was near the Powell Street station which is the one station we always went to, as it’s very near Macy’s and the stores. And the hotel, was across the street from Union Square which we’d walked by hundreds of times. Strangely familiar territory—-not that I ever thought I’d be back here at a blogging conference to talk about being the mother of an autistic son and writing on the internet about it.

Friday, I met the members of my panel “in person and actually,” went to a panel on video blogging (no plans of starting that here), and wandered around the exhibits, where I helped myself to a plate of smiley-faced McCain fries (thinking of Charlie; he only likes the ones that looks like McD’s) and got into a conversation about Charlie’s struggles to read with the folks at the Leapfrog booth. Then to BART to Oakland, where I met my parents for dinner at a restaurant across the street from where my high school was once located. I dozed off on my parents’ couch as my dad explained how he has been printing out every entry from my original blogs about Charlie, My Son Has Autism and Autismland (”gives me something else to do besides play Solitaire”) and my mom prepared to make oxtail stew—a dish that made sense since it was about 50 degrees in the Bay Area, versus (as Jim reported to me) 95 in New Jersey—as my relatives were coming over on Saturday night.

Saturday morning I left later than planned. I left my bag by the door for my dad to bring when he picked me up in the evening to go to the airport. “How about we go to the Lake Merritt station?” he said. “That way the trains come every 10 minutes instead of every 20 minutes.” I didn’t think that made much of a difference. As we were approaching Lake Merritt, my dad said, “Do you have a few minutes?” I said, of course yes; no Charlie duty going on. “Good, then you can go visit Ngin-Ngin,” and he pulled the car in front of her house.

We walked by two young Chinese American women who offered us pamphlets about their church and up the old stairs. Ngin-Ngin was in her kitchen, bright and cheerful in the morning sunlight, and one my aunts was there, too. My grandmother has a live-in aide; the aide gets every Saturday off, and my dad and his siblings stay with Ngin-Ngin, who’ll be 103 in October. “She’s going blind in one eye, we think,” my dad said under his breath and went to the dining room to check her mail. I said something in English and Ngin-Ngin said something in Cantonese: The same exchange we’ve been having all these years. I said good-bye and my dad walked me to the BART station and soon I was back at the conference.

Here’s a photo of our panel on mom-bloggers with special needs kids: Shannon Des Roches Rosa, me, Jennifer Graf Gronenberg, Vicki Forman, and Susan Etlinger, who organized the panel. Susan’s put up some photos here, Vicki’s blogged twice about it here and here, Jennifer wrote this prior to the conference, Shannon put up the photo and also here. and wrote about the most important parenting panel at BlogHer08. We talked about how we got started blogging and balancing public and private, especially for children who are disabled. Jennifer talked about editing an anthology about parent writing and how she was told that three submissions by parents of disabled children were too “scary” to include. She disagreed and worked and pushed to get those three submissions in; only one—poems by Barbara Crooker (a friend; I’ll soon be reviewing her latest book, Line Dance)—was not included. (Yes, I couldn’t believe it, and yet I could.)

The panel was too short and there’s more to be said about what was talked about, especially from the audience. I went to another panel, wandered again through the exhibits area and—when I passed the Leapfrog booth again—it was insisted that I take home a Tag and a Leapster for Charlie. I was a little flabbergasted.

After the keynote—Heather Armstrong and Stephanie Klein—-I found myself in two places that are straight out of my childhood mythology. First, the lower level of Macy’s, through which we always entered to look for school clothes before the stores got bigger on the Easy Bay side. The conference held a reception in the handbag section of the store, which led to the surreal feeling of hors d’oeuvres amid the Marc Jacobs. Then onto dinner at a Chinese restaurant, but the handbag displays made it very difficult to find my friends and I left the reception and found myself walking up the hill, pass the Sutter Street garage where my family’d squeezed in our cars many a time. Then through the Stockton Street tunnel, and into Chinatown.

My family never goes to eat in Chinatown anymore. We used to—-Joe Jung’s for the fried chicken, Empress of China for something really fancy, a place maybe called Hong Kong Garden for dim sum—but there’s plenty of places across the bay now, so no need to bother. I went down Jackson Street and only had time for 25 minutes of dinner before hurrying out to meet my dad. I watched the multiple generations of a Chinese family stand around and talk in front of the restaurant as the multiple generations of my family used to. “Ho sik?” the grandmother (who still had black hair) asked three children; the boy was wearing green crocs and running back and forth with his sisters. Someone who might be their father, uncle?, appeared with a baby in a baby carrier and a plastic bag of leftovers.

My dad appeared, very glum. “Do you have my bag—-” I started to say. “Mom called me,” my dad said, with suppressed exasperation. “It’s still by the door to the garage.”  “I said I’d put it in the car but you said not to,” I said. “Yes, I know,” said my dad.

Somehow one of my aunts got to the SF airport in record time, with my bag (containing my cell phone charger….) and I went through security and onto the plane and then to Newark Airport and a Port Authority train station in a random unweeded area on an 80 degree Sunday morning and then to NJ Transit and then I walked home, as it was only 7.30am on Sunday morning.

I didn’t start unpacking till after noon. Charlie—after devouring some Chinese treats my mother had sent—-was sitting on the couch when he saw me take the Leapster out of my bag.

“Give,” said Charlie. “Mom! I want.”

“Sure,” I said. I helped him type in CHARLIE and he fiddled around with the buttons and screen and stylus for the rest of the afternoon until a bike ride with Jim. Charlie reached for the Leapster again as I tucked him into bed and it was by his side when I went to check on him.

I’d been remembering how he had one of the first Leapbooks and loved it, years and years ago, and then things plateaued and we put the toy aside. The Leapster is the same green and green as the book, and has the blue stylus attached by a string.

And I wonder if Charlie thought, on seeing it, that’s something I had once when I was younger, and now I have it, here, again.

Photo courtesy of Ji Design.

“Happy is he who knows the causes of things,” writes the Roman poet Virgil in Book 2 of his Georgics. Virgil was writing about the stars and the sun and the moon, about why there are eclipses and earthquakes, about natural phenomena, about the cosmos—-and his words can be applied to a much more specific concern, the discussion today about the cause of autism. The need to figure out “what causes it” seems, indeed, to be the main goal of so much research about autism.

Certainly this need is what principally fuels the discussion/debate/issue about vaccines and autism. Today in Washington, D.C., the federal government is holding a public meeting of the National Vaccine Advisory Committee (NVAC) Vaccine Safety Working Group, to “discuss a government-wide research agenda to explore the safety of vaccines,” as the New York Times reports. And Bernardine Healy, M.D., writes nothing less than

Thank goodness for the vaccine court

in the April 10th US News and World Report, Healy notes that, the medical literature of 40 and 50 years ago is “replete with reports of neurological reactions to vaccines, such as mood changes, seizures, brain inflammation, and swelling.” It it, she says, thanks to the efforts of “doctors, researchers, and yes, families,” that “sacred medical dogma” (including the “universal vaccine strategy”) are being challenged.

Sometimes it feels that—in talking about autism—-one has to reveal whether one is “anti-vaccine/pro-vaccine safety/a vaccine skeptic,” or not. But how happy will anyone really be when, if, the “cause of autism,” or of the recent increase in the prevalence rate of autism, is found to be from vaccines?

Because—when one sees how much energy is focused on this particular topic—-one wonders about all the autism topics that are not getting talked about.

Causa, the Latin word for “cause,” also means “reason,” as in “reason why.” When I think of the words “cause” and “autism” together, what I first think of is not “why is Charlie autistic” (I have only to consider the various quirks and different-ness of my husband Jim and me to know that Charlie a lot from us), but of how much I’ve learned from the experience of raising Charlie, and just from Charlie; of how many roads I’ve now walked on that I never would have even noticed, had it not been because of my no longer little boy.

Last night–a Thursday night; a weekday night—took me—us—to the JCC of Manhattan, after a few other stops.

The first stop was, as ever, the parking lot outside our apartment in north-central New Jersey, where I met Charlie’s bus. The plan was that after a quick snack, he and I would board the black car and drive to Newark Airport to meet Cliff Schumacher, who was to arrive in the early afternoon, after which we’d all go together into New York to the JCC, where Jim would meet us.

This did eventually happen but first—what’s a night out without a twist?—-some delays occurred. “Maintenance” needs delayed Cliff’s plane by a couple of hours, and I found myself looking up train schedules as Charlie packed up his backpack and informing me it was time to leave. We left just around 5 pm; drove around Level 4 of short-term parking looking for an empty space; walked through Terminal C. Cliff arrived shortly after 6pm and then it was onto the Airtrain and NJ Transit (where the noise and the unusualness of the whole situation briefly got to Charlie; I was feeling a bit flushed too), and then into Penn Station and NYC and onto a really crowded (it was commute hour) #1 subway uptown. Charlie squeezed into an empty seat and was peaceful easy-feeling and attentive—nothing like the motion of a subway car.

It was just nearing 7.45pm when we hurried up Amsterdam Avenue to the 7th floor of the JCC; found the room; met the babysitter that the JCC had very kindly arranged for; and listened to poetry by Jason Ross and more poetry about baseball by Leigh Silver, and to Amy Gravino on her forthcoming book and ABA, and Cliff’s reflective piece on identity and autism. Kim Stagliano had read before we got there and we spoke about our children; Jacob Artson presented via a live feed from Los Angeles and said, memorably, that

not being able to speak means being able to have lots of time to think.

(I think I got that right—-something to think about.)

Charlie sat with the babysitter just outside the room and munched and (as she noted) answered her questions; at one point (I was reading) he wandered up to the podium and I assured him that “Dad will come soon” (and Jim indeed did, after teaching up in the Bronx; Charlie grinned big). We got a ride back to Jersey from another mother (thank you!); Charlie stretched out in the back seat of our car and was asleep when we got home. We got him up and he padded heavily, but eagerly, up the steps curled up in his bed. I set his blue backpack on the floor nearby and carried out his fleece coat and vest (blue too) and shoes to the living room, ready for him to don before the schoolbus appears again.

As I tucked the blanket under his chin, I felt—it’s another meaning of the Latin word for “happy,” which is felix—lucky to have met everyone tonight; lucky to know my son; lucky to have such adventures, because of a certain boy.

It was cloudy when we drove up to the train station. Charlie had yet to take off his seatbelt when we heard the roaring of the train: “It’s here already, come on!” said Jim and we tugged Charlie out of the car.

Too fast. Charlie started to cry, or rather to wail, but held onto Jim’s arm as we ran up the stairs. A group of young women—soccer players, from their uniforms—-was boarding one by one and we got on with time to spare. Charlie took a window seat and was quiet, and leaned back taking easier breaths as he looked out over the urban terrain of Newark, and then over the old factories and smoke stacks and reedbeds of the Meadowlands. We got into the city, took the subway up to 76th street and Amsterdam and walked by the JCC (too late the for the Family Art Day but we’ll be back on Thursday for the Lit Café), and then walked down Broadway to Whole Foods. Charlie stood extra-long before the sushi case and finally chose a packet of Vietnamese summer rolls and another with a seafood combo, and then a dessert. The place was packed with the line stretching back almost to the entrance of the store but we found an empty table and Charlie opened everything up and ate contentedly. With a big smile and “hey Dad! Dad!” he reached across the table and held both of Jim’s hands.

On the way out to the street, maybe one of us raised our voices a bit to be heard over the crowds, or maybe it was the jazz mix playing on the second floor of the mall. Charlie started that wail-screech-cry again, loud and—his face made this clear—distressed. He put both fleece-gloved hands over his ears (snuggled under the hood of his blue fleece coat).

Up till the past month, Charlie has never seemed to be sensitive to sounds. Police car sirens, car horns, any kind of music, the roar of the ocean: None of these had seemed to bother him. Only high-pitched sounds—the bark of small dogs; my voice, on occasion—had made him upset. Certainly, the hands-over-both-ears is something Charlie has never done, until now. Another sign of his ever-increasing awareness of his surroundings? The result of his lessons in piano and cello—making Charlie more aware of and attuned to sounds?

I thought it would be best to walk down to Penn Station, as physical exercise has seemed to help Charlie work through his anxieties. Jim insisted that we get on the subway: “The ride and motion soothe him,” he said, and through the turnstile we went. The subway car was filled but Charlie spied a seat and crammed his way in and put his head down, elbows on his knees.

People came on and off and the crowd thinned out. By the time we were down to Canal Street, we had the car entirely to ourselves. Charlie sat up and squinted, hands over his ears sometimes, hands down. Seeing no one else around except for Jim and me, he pulled up his legs onto the seat and then lay down. By the time we got off and walked through lower Manhattan to the PATH station where the WTC once was, Charlie was at ease.

As I glanced to my right, these words were scrolled by on a news ticker on a building: Whatever you think, father knows best…….

No kidding!