Friday afternoon, Charlie's teacher emailed that another incident report has already been filed; she didn't mention specifics (she wrote about a "rough patch"). O where o where is the high-powered autism consultant? It would be well for her, and for the school district, to figure out why this sort of things keeps happening, by doing a Functional Behavior Analysis. Jim and I had his former ABA/Lovaas consultant observe him during summer school. And I have repeatedly sent Charlie's teacher and other school personnel and administrators links to my writing about Charlie, and Jim's and my understanding about we have been able to help him be "peaceful easy-feeling." We're just parents, though---I'm "mom," as a school speech therapist wrote in her evaluation---and people, and school districts (and their lawyers), make their own decisions about how they will proceed.
We have a meeting scheduled with the district for the 25th of September, next Friday. We are still seeking an emergency meeting ASAP with the school district (who seems to be unable to schedule anything unless a specific case manager is around).
In the midst of this intense ridiculous ridiculousness---including a letter from the Special Education Director asking me where was the $9.75 the Board of Education charged us to get xeroxes of Charlie's file (I reviewed our bank records and saw that our cheque for the $9.75 was deposited by the district on the 3rd of September)---Charlie has been a trooper. Friday I picked him up early from school. He's constantly shadowed at school by at least two aides/teachers, one of whom is always a guy, and they were standing beside him when I walked into the school office. I removed his helmet, wished everyone a good weekend, and 5-foot-tall me walked out with 5-foot-6-1/2-inch-tall Charlie behind me. (He looks like he might be one of the taller kids in the school, period.....he's basically the same height as many teachers and staff there, including the Assistant Principal with the walkie-talkie/phone permanently in his back pocket.)
Charlie had a (Child Study Team paid for) neuropsychological/educational evaluations and, after a balky start, it went well (though not too much actual testing was done of him). Jim and I discussed our concerns about the school district and Charlie's placement. As the doctor's office was in the same town as the nursing home where Jim's mother has been since the summer, we went to see her. She is in a private room near the nursing station so there is fair amount of hustle and bustle outside her door, but it's very quiet in her room, aside from the drone of the TV. She has lost her sight in one eye. I don't think she ever leaves the room: She is just lying there; she never was one too walk much (she had knee replacement surgery a few years ago, but already had trouble getting herself into motion before that). Charlie always walks up to the foot of her bed and says "Hi Granma, hi Granma" several times, and Jim sits down beside her to talk, though her sense of things fades in and out. (Friday afternoon, she talked about Jim being a priest.) "I want to go where you're going," she said.
Jim sat with her for some time, while Charlie and I went back to the car. After Jim came back, I asked him if we might try to get his mom in a wheelchair and sit with her outside in front of the nursing home---I mean, she's been in that same room for weeks and weeks and weeks. I guess it's the native California in me: I always think sunlight and fresh air can make a difference, even a little one. I know it's not possible, but I wish we could take to see the ocean once more. The beach where we go is where Jim and his family vacationed when he was little and, while they didn't have quite the tight team o' three togetherness that he and Charlie and I do, Jim and his mom always loved being there. I know that, as much as she'd like to get up and leave, just getting her into a wheelchair is going to be a major challenge.
Jim and I always more than heartened to see how eager Charlie is to see his grandmother. Charlie has spent a lot of time with her. We moved back to New Jersey in 2001 and saw Jim's parents almost every weekend until we moved into their house in June of 2006, so Charlie could start going to school in the town they'd lived in for 30 years. The autism program that Charlie's in is a newcomer to the district (and showing signs of growing pains, possibly severe?)
We can't let kids like Charlie be nickeled and dimed. We can't let them, or their families, be made to feel isolated and that we're the "problem" ruining the school district's excellent ratings as noted by the likes of Newsweek. I've been wanting to look more closely at the problems and politics of public school autism programs. I guess I'm going to be getting my chance, and then some.