After a bit of an unordinary Saturday, we had a nothing-special Sunday. It’s a balance of new things and familiarity that we’ve found amenable for Charlie. While bike-riding and piano and cello playing were all nothing unusual for Charlie to do, doing these things for a camera and with a lot unfamiliar people around—-that calls for some unwinding.

Sunday Charlie woke up early and then went back to sleep (actually, we all slept in). He had breakfast and wanted to eat more and when I suggested he ride his bike to the bagel store with Jim, Charlie called for his helmet and put on his socks and shoes and sweatshirt. He looked in the usual place for the helmets and only found a very old one of Jim’s (that makes the wearer look like he has a turtle on his head). Charlie tried it on and put it down and I noticed that the helmets were on the floor in front of a bookshelf. Charlie grabbed one and I brought Jim the other one: “They’re interchangeable!” Jim noted and off they went, not to return for an hour and a half, Jim swinging a plastic bag loaded down with juices and a bagels from his handlebars.

Charlie ran for a plate and grabbed his Leapsters and the bagel bag and set himself up on the couch—yes, you read that right—it is now Leapsters. Saturday afternoon we realized that Charlie’s original Leapster—lovingly carried to many places and always under Charlie’s arm when we go to New York—-had suffered too may falls and dents and was stuck at the opening screen. (Charlie also likes to carry it by the attached stylus sometimes, and that has led to it working erratically.) I got online and looked up the Target website and found, lo and behold! our local Target had Leapsters in stock and so to Target we went, where Charlie (once I found the aisle with Leapfrog products) stood solemnly eyes agog at a stack of Leapsters (green and pink). He looked at me (yes, pleadingly) and I said (of course I said), “Sure, you can get one.”

The Leapster box was carried tightly under Charlie’s arm as we made our way through the store. Charlie and Jim wandered into the DVD aisle while I located shampoo and soap; I found Jim waving a book at me. Its title was Goodnight Goon, a parody of what is still Charlie’s much loved book (and we both agreed, it doesn’t quite compare to the original, but maybe we’re overly sentimental.)

Charlie pushed the Leapster box toward me soon as we got home and told me “I need help.” I got out scissors and then batteries (just purchased) and a screwdriver and soon Charlie had his new Leapster going; he ran to get the old (chipped, battered) one and set them side by side.

So Sunday, he made sure to have those Leapsters around as he ate his bagel, and then took them to his room where he was going through a rather messy pile of old CDs. I again heard the call “help” and “fix“; when I went into his room, Charlie handed me a CD with a picture of Barney on it. Part of the CD had broken off and I said ok and got some tape and, with Charlie scrutinizing my every move, carefully lined up the edges of the CD and the chipped off part and handed it to him.

“Thank you,” said Charlie.

I said, of course, you’re welcome, and went to tell Jim because, yes, first time Charlie has said that on his own.

Thank you, Charlie.

Around 11.30 am on Saturday a black van pulled up in front of where we live. Charlie was sitting on the couch and looking out the window for Jim to return with breakfast and his eyes lit up at the sight of that van.

Back in June, Jim and I were interviewed by Todd Drezner, who’s making an autism documentary called Loving Lampposts. Yesterday Todd and his crew came to shoot some footage of Charlie and us. After a couple of really fast “no’s,” Charlie sat down at the piano and then strapped on his helmet to ride his bike.

Charlie made sure Jim had his and hopped on to follow Jim’s black bike. It took Charlie a moment to swing his right leg over his red bike and for a moment he balanced an almost-still bike before his left foot found the pedal, and then he was off and riding. After going halfway down the street, Jim tapped Charlie’s shoulder and the two of them turned around in unison and rode past the cameraman, then rode about halfway down the street the other way before turning around again in a neat oval. Charlie’s whole face beamed as he flew by.

After about four rounds of that, Charlie told Jim it was time for an actual bike ride and off they rode. Todd and his crew asked about a place to each lunch. At the sight of the three men getting into the black van, Charlie said “no, no” and stood sentry by the back of the van, until Jim suggested that they follow him and Charlie to a restaurant, and off they all went. Jim and Charlie stopped at a sub shop where Charlie said “no” after a split second to a meatball sandwich. At first Charlie was unsettled and broadcast his voice and anxiousness loudly. Jim went about ordering and getting food and settling Charlie in a booth and they ate (Charlie got a bagel; Jim had the whole sandwich).

When they came back, Charlie relaxed on the couch and then said “yes” to playing the cello (whose G and C strings were very out of tune; fortunately I was able to fix that). Charlie sang as he plucked each string and he can really carry a tune: “A, A, A; D, D, D; A, D, A, D, A, D, A. C, G, D, A, D, G……”

Afterwards, the crew packed up their equipment while Charlie ran out to admire that black van; it was shiney and gleamed and Charlie and I could see our full reflections on it. Charlie had his faithful blue hoodie pulled tightly over his head as he peered at the black van’s side. Todd and the crew said their good-byes and Charlie backed away and watched the van drive away.

“It was nice seeing friends today,” I said.

“See friends today,” said Charlie.

Charlie’s eyes always light up when I say the word “friend.” Maybe he doesn’t have friends in the usual sense of that word, friends who are his age and peers and who he hangs out with. But for Charlie, there’s no questioning of the wish for contact and time with others, for being among others, to be with people, and to enjoy their company. And having a chance to show off just some of what he can do makes for another good day with Charlie.

Earlier this summer, Charlie and I had a very good time watching Kung Fu Panda. We went after the movie had been out for awhile and sat in the back. The movie itself was noisy and Charlie wasn’t the only child talking during the movie and moving around some.

Sensory Friendly Films is a pilot program that, it’s hoped, will make the movie-going experience more friendly for families with autistic children. The program is a team venture of AMC Entertainment (AMC) and the Autism Society of America (ASA). From the ASA website:

In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down. Additionally, AMC’s “Silence is Golden®” policy will not be enforced unless the safety of the audience is questioned.

The program starts this month with a special showing of a new animated film Star Wars: Clone Wars; go list of cities and theaters.

Each showing begins at 10am local time—a little early for us to break into the popcorn, but I suppose a movie theater isn’t going to shut down at prime time.

Thomas Brown, a filmmaker in Ohio, is making two films, one called Ant Boy and the other Silent Hero, which both include autistic characters. Today’s Port Clinton News notes that both films are to be about autism, bullying and the emotional issues that children face. Brown (who can be contacted by email) is looking for an autistic child to play the autistic child, if he can. Would this be one of the few times or even the first to have someone autistic play…..someone autistic, in a film that’s not a documentary?

Being different; being disruptive; looking different; smelling funny (according to those who think they don’t); yowling………

What do these apply to?

Are these perhaps a few reasons why a 2 year old and his mother were kicked off an American Eagle plane, or a 13-year-old’s parents had a restraining order filed against them, or a 5 year old was voted out of his class?

Well yes, but actually, nope.

The different-looking-and-being, disruptive-behaving, smelling-funny, yowly individual I am referring to is……………..Po aka Kung Fu Panda.

Charlie and I saw the movie Kung Fu Panda Tuesday evening. We haven’t seen a movie in a while and we had some free time on Tuesday and Charlie said “yes, movie!” when I asked him. I knew the movie’d been out for awhile so it wouldn’t be crowded (it wasn’t); we came about 15 minutes after the actual movie start time (in the past, Charlie has watched all the trailers and declared it time to go). We sat in the back row, with popcorn and a soda.

We had the funnest time.

Charlie’s eyes were (honest!) riveted to the screen, and even after he’d handed me the empty popcorn and soda containers. He wasn’t 100% quiet (a couple times, he imitated the animal characters, especially when Tay Long, the bad guy snow leopard (?), grunted some things and roly-poly Po responded cheerily and cheekily). He asked twice for the bathroom—the first time, he couldn’t get up because he was too engrossed in the movie; second time was right near the big fight finale, and we made it back just in time…….. There were a couple of much younger kids and mothers in front of us and some standing up, passing around of popcorn, eyes closed at the scary parts (that mountain prison, yikes!, and the rope bridge…….).

We left the theater in a thoroughly happy mood, with Charlie talking about eating noodles, which Po the panda’s father (a goose) doles out in a restaurant. As you know, we did not get noodles and I spent Tuesday night and Wednesday morning (when there was sunshine) scrubbing out the back and part of the front of the black car, whose windows had been left open overnight. Charlie took the day off from school—-maybe the popcorn (which he’s eaten before), or a stomach thing making its way ’round his classroom, or the pool water added up to Major Stomach Distress. He talked about “noodles” throughout the day and “PoPo” (that’s what he calls my mom; it’s Cantonese for “maternal grandmother”). And did he catch those occasional references to “all of China” and note the chopsticks and the dumplings the kung fu master Shi Fu uses to train (motivate) Po?

Charlie was really listening and something about that panda, with a touch of ADD and trying so hard to learn kung fu like the other animals and blundering and breaking holes in the paper walls….. I couldn’t help but think of Charlie’s whole-hearted attempts to learn and do his best, and how so often it just seems he’s been prejudged as Not Right, Too Different, and Just Can’t Do It. Po prevails beyond anyone’s (including his own) wildest expectations in the end; at one moment, he’s to gain a certain knowledge about the secret ingredient to more or less everything and he discovers that it’s……..

………………

………………

………………….a lot more and a lot less than you might think, but just right.

How is it that we can be so accepting of “difference” on the silver screen with DreamWorks animation, but when it comes to real life and real kids with real disabilities, it’s not easy? Though that doesn’t mean we can’t have a happy ending, or something close to it.

And some homemade won ton on the side.

(We know what the secret ingredient is.)

It used to be a running joke between Jim and me that, since I was expecting Charlie, we’ve seen a total of two movies in a theater together (this and this, so you can get an idea of when we last went). With the price of a movie date running upwards of $30, am thinking we are better off with Netflix and the couch.

Read about it here in the March 15th Philadelphia Inquirer. The therapy has autistic children build with Legos and animate what they make by taking a sequence of digital photographs. Members of the “Lego Club” meet for one hour a week at the Center for Neurological and Neurodevelopmental Health in Voorhees, N.J. under the supervision of three adult leaders. The therapy was devised by pediatric neuropscyhologist Daniel “Dr. Dan” Legoff.

To force communication and collaboration, Legoff assigned rotating roles. The “engineer’s” design had to be acceptable to the “builder,” who had to get parts from the “supplier.”

Jonathan’s year-old group, one of eight at the center in Voorhees, has reached the club’s premier level _ “master builder” _ so now members devote their sessions to producing stop-action videos. These are shown at the Lego Club’s annual “film festival,” attended by adoring fans (relatives).

“I feel bringing Lewis here has brought him out of himself,” said Karen Roberts, mother of one of the filmmakers. “He’s loved Legos since he was a tiny kid. But before this, he didn’t really socialize a lot.”

Lynda Shanahan, [13-year-old] Jonathan’s mother, said: “I wouldn’t say he has dramatically changed since coming here. The diagnosis is like layers: Peel away one problem and another comes up. But I have seen growth. This has helped him get a group of friends where he fits in. It’s built his self-esteem.”

Lego therapy is most likely not for my son, not only because of the level of his language and cognitive/academic skills, but also because Charlie has limited interest in Legos. He stacks them one atop the other and presses them in and tends to be more inclined to line up different colors in patterns and look at them (and interrupting him in this activity unsettles him). A friend did suggest getting Charlie a camcorder (preferably one that can take being dropped a bit) and having him take movies of things he likes—not therapy, maybe, but a good way to help Charlie record the things he like and, too, for us to get more of a glimpse about his view of things.

Sounds like that could be good therapy, and good teaching, for me.

Yesterday I noted two musicals about autism—-here’s two more movies with autistic characters. Today’s New York Times has a round-up of 15 films in the 13th annual Rendez-Vous With French Cinema 2008 series. One is a documentary by Sandrine Bonnaire about her autistic sister, Her Name is Sabine / Elle s’appelle Sabine:

…..throughout her acting career, Bonnaire has also been filming her younger sister, Sabine. Called crazy by her schoolmates and diagnosed as problematic by the authorities, Sabine moved in and out of schools until, in her late 20s, she was put in a mental institution. Bonnaire’s very moving, enlightening film finds Sabine at 38, living in an adult care facility after having finally been diagnosed as autistic five years earlier. An exposé of the ignorance that has plagued the treatment of autism, the film is even more centrally about the relationship between Sandrine and Sabine — the care, the closeness, the feelings of guilt and especially the frustration as one sister feels helpless to stop the other’s decline.

The New York Times describes Bonnaire’s film as the “most wrenching” in the series:

Ms. Bonnaire’s documentary about her younger sister’s struggle with autism incorporates 25 years of home movies. The sadness of Sabine’s decline from a young woman with sparkling eyes into an anxious, fearful middle age (she was 38 when the movie was completed) is mitigated by the film’s portrait of a sisterhood that flourishes in spite of every obstacle.

It does sound wrenching, though—myself being 39—I’m not sure why the NY Times says that Sabine is middle-aged.

Another new movie from Australia, The Black Balloon, and includes an autistic character by the name of Charlie (how can I now be interested…..). Its director, Elissa Down, has two autistic brothers The Australian notes that the film has opened to “rave reviews” and profiles Tyne Miller, who is 19 and autistic, and who plays a lioness in a dance scene depicting Noah’s Ark in The Black Balloon. Says Miller:

“It was pretty interesting being in the movie, when we played together as animals……Autism means someone always likes to be alone, sometimes you like being with people and sometimes you don’t. My talking, my sounds, it’s difficult just a bit. It worries me a bit.

“I work at the library, I started last year. It’s going well. I don’t have any problems. I want to keep going working in the library. That’s it. I put the books away and the DVDs away. It’s OK work. A happy person? Yeah, I am.”

Maybe it’s because, for the past several years, my husband has been writing a book about the port of New Jersey and New York and about the 1954 film On the Waterfront, which is about how broken-down boxer/longshoreman Terry Malloy finds redemption when he stands up to the corrupt union bosses who control the docks (and who have some shady, underworld connections)—–maybe it’s because we were (with apologies to Brett) living in Missouri and homesick for New Jersey when The Sopranos first aired on HBO, and the sight of Tony driving down the Turnpike through the Meadowlands, past Pizzaland, and onto his mobster McMansion made us feel very out of place living as we were in the Show-Me State—-but, I have to confess, the word “whacked” is heard occasionally around here, in reference to either fictional TV characters (the capo “Rusty” played by Frankie Valli who, as Jim pointed out to me, was “whacked off screen”—because hey, he’s Frankie Valli!) or what happens to certain, real-life longshoreman, who got it from the likes of Cockeye Dunn. “Whacked,” in these usages, would mean “to strike; [slang] to kill deliberately,” as distinguished from the “wack” of “wacky,” which of course means “eccentric, irrational; crazy, silly.”

So I’m wondering: As of the writing of this post (5pm EST on the afternoon Monday, 4th February, 2008), is (quoting Age of Autism Editor at Large Mark Blaxill) the “dynamic and democratizing force” of the blogosphere indeed a “Wackosphere” (as in this post on Autism, Serious Scientists, and the Wackosphere by Blaxill) or a “Whackosphere” (as in this post on “Attacking” My Amish Coverage by Age of Autism editor, Dan Olmsted)? Olmsted adds the “h” in referring to Blaxill’s post: Is the blogosphere a careening Web of Fools—or something a bit more sinister—-or is it, according to Blaxill (as noted in a Left Brain/Right Brain) just plain “mean”?

I do know the difference an /h/ can make. It was only when he was 6 1/2 that my son Charlie could say that /ch/ sound and so, when asked “what’s your name?”, was able to respond “Charlie!” instead of “Carlie.” And I also know I’m not immune to spelling errors, typos, and mistakes in my html coding (for instance, I initially spelled “thimerosal” wrong in this post). If I may quote the final words of the 1959 film Some Like It Hot, “Nobody’s perfect.”

Especially on a website that, in most puzzling fashion, proclaims a fictional TV lawyer the “patron saint of autism” and various other fantastic, dare I say wacky?, theories about autism—or maybe I should say “whacky” as this game Charlie and I used to play. Or, just downright “quacky” as in quack science and like this game, which Charlie and I also used to play, and play, and play—definitely wacky, and all in good fun.