It’s about 10 to 7 in the morning and naturally (since there’s no school and we could all sleep late), everybody is up. That’s always disappointing, since the night before a school holiday we always rejoice in the fact that we don’t have to get up at 6 the next day. Ned and Alex are quarreling over the TV, as usual, with Ned watching “Ben Ten,” a show he claims is his favorite but which I think he wants to watch only because it happens to be on.

Photo by drcw (flickr.com)

Alex is saying, over and over with growing insistence, “One THREE? One THREE?” He means he wants to TV turned to Channel 13, our PBS station, which often shows things like “Dragon Tales” or “Thomas the Tank Engine.” I prompt him to say “thirteen,” so he starts alternating the two. “One THREE? Thirteen? Thirteen? One THREE?”

Sometimes having a kid with autism is like listening to a piece of music. Not because it’s so beautiful and transporting (well, it is kind of transporting but not necessarily in a good, floating-above-the-earth-on-a-cloud-of-happiness way) but because every minute or so is completely filled with events and sounds and comments that it changes your perception of how long it actually is.

In between checking email and mediating squabbles, I am also trying to keep Alex from running into our bedroom. Figure one of us should get to sleep late. But Jeff finally says Alex can stay, so I’m just outside the bedroom, clicking away when I hear a ripping sound from the bedroom.

When I rush in, I see Alex in the middle of tearing our blanket cover. I knew there was a small hole in it; autism means there is now a huge L-shaped rip that can’t be mended in any way. I’m furious (I loved that cover). I also knew it was a matter of time before he found it, and a hole is irresistible to Alex.

“Thirteen? Thirteen?” Alex has abandoned one-THREE as a request and is using the more correct form. He’s also saying “Sorry! Sorry!” to Jeff.

So I’m feeling irritated at Alex and scanning possibilities (find replacement on eBay? just go to IKEA and find something new?) when I decide 1) I’ll try to fix it, and maybe it will be an obvious but artistic patch job; 2) that autism is a constant lesson in letting go.

Daily I have to let go of  things, actual things such as blanket covers and magazines Alex has ripped, but also of assumptions about what I thought my children should be, and what I should be as a mother.

Am off to visit the cemetery where my grandfather, Yeh Yeh, great-grandmother, Bak Bak, great aunt, another great grandmother, a very good friend of the family, and many other great relatives are, and then out to lunch in Chinatown with cousins, aunts, uncles and (hopefully, if she’s up to it), my grandmother, Ngin Ngin, who’s 104. It’s always good to be with family—today’s St. Petersburg Times describes the bond between 12-year-old twins, Anthony and Ryan Moran. Ryan is autistic and Anthony is his constant companion:

Most of the time it’s good having a twin, Anthony insists. You always have someone to talk to, even if the other person can’t really talk back.

Ryan understands everything. “Only sometimes he doesn’t care what you’re saying, so he walks away.” And he can speak “when he wants to,” Anthony said. “One time when we were in the bathtub he said the whole pledge to the flag.”

Ryan will catch a ball, but he won’t throw it back. He’ll rebound your basketball but won’t shoot it. In Little League Challenger baseball, he’ll run the bases — but only if Anthony runs with him. “He’s always thinking about other things, so he can’t concentrate,” Anthony said. “It must be weird to be in his world.”

“Weird” maybe, but these are two brothers who are very clearly connected, however much one speaks and one is not able to.

A sad sad story from New York—7-year-old Chelsea Maldonado fell from a fifth-story window of her parents’ Bronx apartment on Christmas Eve, the New York Daily News reports—-reminds me of what I’m grateful for. Chelsea was autistic, blind in one eye, and bound to a wheelchair. Thinking of her family, and many families—-the Morans in Florida and many many more—-hope you’re all warm and safe and together today.

So says 15-year-old Roderick Robertson, who takes care of his younger brother, Tim, every day. Tim has autism and his older brother is his regular caretaker, today’s Courier-Mail reports:

Roderick, who also lives with his stepfather, two stepsisters and stepbrother, describes home life as “hectic” but says it with a smile.

There are times when he misses out on social outings with friends because he looks after Tim and school holidays aren’t always as fun and carefree as they are for many of his peers.

“I have a roster of when I need to be at home to look after Tim over the school holidays,” he says.

“I take him to the park, muck around with him - that sort of thing.”

Sounds like how I spend many any afternoon with Charlie, and many moments that I wouldn’t have missed for anything.

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.”