I wasn’t feeling well yesterday (better today). I put together a very perfunctory dinner for Charlie—-vegetables, shrimp, and some rice—and sat beside him while he ate. Once done, he put all the dishes into the sink and then stood with one elbow bent, looking towards me.

I surmised (correctly, as it turned out) that he wanted more to eat. As I felt woozy, it seemed best to stay in my chair and, after finding out that Charlie did indeed want to eat more, I requested him to: get out some rice that was in the refrigerator, put it in the microwave, turn it on for a minute (he did 1.23 seconds), get a plate, get a spoon, get the rice out. .All of which he did, and fluidly, readily. And then he shut the door to the microwave and closed the cabinet doors and sat down at the table, and ate.

I felt well taken care of.

On May 13th, two men from Worcester (Massachusetts) started walking across the US in memory of Elias Tembenis, who was autistic and passed away last year at the age of 7, and on behalf of the National Autism Association (NAA). The two men completed the walk last week on Election Day.

Reading about this, I get this image in my mind of Jim and Charlie someday undertaking a similar walk, or maybe going for their longest bike ride ever………..

Having taught Charlie to pedal, “squeeze brakes!”, recognize a stop sign, bike up hill, walk the bike, and go “left” and also “right,” Jim leaned over and turned Charlie’s gear shift to 4.

When Charlie started to ride his new bike, he was (Jim realized) sometimes playing with the gears, moving the little handle around the dial: No wonder Charlie was not so sure at first about riding the new bike. Learning to use the gears is—as Jim proclaimed when he and Charlie came home after bike ride #2—the “final frontier.” Who knows what hills and mountains await?

What gets “disclosed” and what does not was the issue at the center of the recently released document concerning Hannah Poling. I have “disclosure” and “transparency” of a slightly different sort on my mind right now. Charlie’s IEP meeting is today and, amid reading over documents and evaluations and forms, reading up on IDEA at Wrightslaw, writing up some things, reviewing the draft IEP, I’ve been thinking about how key good, honest, and trusting communication is not only in creating Charlie’s IEP, but for his education as a whole.

Charlie’s speech is very limited and—aside from what I observe in his behavior—we rely completely on the reports from his teacher to find out how his day at school went. In Charlie’s school program, the teacher also makes home visits and parents can visit the classroom regularly, so that the teacher can see what Charlie is like in his home environment, and vice versa for us.

This kind of relationship most often gets tested when confusion and conflict arise and, more often than not, when Charlie is struggling, as revealed through behavior problems. As I’ve noted here before, Charlie had a history of regular self-injurious and aggressive behaviors when he started in this school district in June of 2006, and, after careful teaching, these are very much under control. We’ve all learned more about what might be triggering an anxiety attack in Charlie, and what to teach him so that he can ask for a break or to calm himself down. In the past, hearing another child crying has really upset Charlie. He used to get very distressed; now he has been asking to leave the room, or just waits it out by putting his hands over his ears.

Parents of autistic children in Wilton, Connecticut, have started a petition so that school administrators will hold a hearing on the district’s autism program, the May 1st Wilton Bulletin reports. An Autism Program Report (funded by the school district) was issued in October 2006; parents say that “little to none of the recommended changes had been put in place, and their greatest concern is the time to intervene, and possibly make drastic changes to their children’s education, programs and futures has, in many cases, come and gone”:

The parents said the mechanisms put in place for parental involvement and interaction with the autism program are broken.

The Autism Task Force, which is comprised of school staff, attorneys and a group of parents, does not allow for much input, Nancy [last name not mentioned]said.

“The Autism Task Force has one selected parent member who’s allowed to speak,” she said, adding the other two parents must remain silent. “I don’t know what intent there is for parental input.”

The Parent Advisory Board was dismantled in 2006, and when it was reconfigured, parents were told they could apply to serve, she said, with the schools choosing the advocates allowed on the board.

What’s more, Nancy said, members of the Board of Education do not attend meetings of the two groups, nor are the meetings recorded. So reports to the school board members come from the administration.

“I just think that there’s too many layers of filter between us and them,” said Mary.

By petitioning for a public hearing, the parents hoped to bring their concerns about the program directly to the policy makers for the schools.

“It really is about the parents wanting to build bridges with the Board of Education,” said Nancy, another mother. “It’s not productive for anybody, and that’s what exists,” she said of the often adversarial relationship between parents and the schools.

The Wilton parents seek to have more input and interaction among the parents, task force and advisory board and school board about the autism program and about staff hirings. 64 signatures have been collected so far. While it is not clear is the petition has statutory power to force a hearing, parents hope that the Board of Education will recognize the importance of the issue and hold a hearing of its own.

Needless to say, this sort of situation is not what one hopes to find oneself in, talking about statutory requirements and hearings instead of teeth brushing and writing the ABC’s. How ironic, Jim and I have often mused, that communication is so often a problem among parents and professionals, especially considering how hard we all work to teach our kids to communicate.

We’ve so far been very pleased with Charlie’s school program. I’ve already toured Charlie’s new classroom and spoken at length to his new teacher, who has also worked with Charlie’s current teacher on his new programs on his new IEP. Charlie will most likely have the same speech therapist, occupational therapist, and Adapted P.E. teacher. We are seeking ways to have Charlie participate with peers in activities that his interests lie in, in music and sports. We are constantly on the lookout for new ways to teach him to work on reading, typing, writing, and basic math skills.

I’ve been emailing back and forth with the other mothers of students in Charlie’s class. As our kids are moving up to middle school, we’ve decided that we really want to have some sort of ceremony to commemorate the transition, and that everyone’s made it this far, and is moving on—growing up, as I was reminded yet again when, without my asking, Charlie yesterday evening took two bags of groceries out of the car, carried them in (and his towel from swimming), carried the bags into the kitchen, and set about putting everything away in more or less the right places. (Green bananas won’t get too ripe in the refrigerator.) While he did that, I put away laundry, answered some work emails, and kind of had a moment to catch my breath.

That’s all I’ve to disclose of Charlie’s IEP (for now).