So we spent 10 days in Florida, after Christmas. We went to Disney World. Riley is always up for a Disney trip. He's kind of a pain in the ass the first couple of days though. Particular about where we should eat, hard on his brother (who lacks the Disney knowledge that Riley has), basically he wants to do what he wants to do. The food thing is a real pain. He gets a "feeling" for a certain food, and if that's not an option on a menu, there are issues. Super annoying. I mean REALLY super annoying. We let him make the choices the first two days and after that, he was SOL (shit out of luck) if he didn't like what WE chose.
The meanness towards his brother drives me nuts. He can be nasty mean to Quinn. It's something we are hoping his therapist will work on, IF he can stop talking about Disney TO her. He doesn't talk WITH people, he talks TO them. He just started a social group on Sunday (which Kevin and I get to pay out of pocket for, since the school will not provide the service). We are hoping the group, and the awesome leader (she works for our district and boy does she know what she's doing!), will help with the meanness towards Quinn, in addition to the reciprocal communication. Oh, and the calling us and others by their NAMES. I have heard "mom" a little more often now, so hopefully there's progress.
Riley seems a lot more withdrawn lately. He just wants to disappear into his own world. He's not answering questions, the first time. He was doing that before, and I was always all over his case about it. He'd do it to other people though: grandparents, teachers, peers, us. It drove me nuts that someone would ask him something, and he just wouldn't respond. He got better about it, but lately, he's starting to do that again. I am insisting on responses. I won't let him disappear into his own little world. He has to be engaged.
School wears him out. I honestly will be surprised if he lasts through high school. He would never drop out, but eventually we may have to pull him out. Especially if we get nowhere with the school, like the junior high. The high school has A LOT of kids, and I've heard the halls are very crowded. He's not going to like that-the crowds or the noise. That may be one area where accommodations are made. There are 1,002 kids at his junior high, but the high school is even bigger. I have concerns. Nobody seems concerned about my concerns except me though. I have sought out advice from an advocate. We'll see what she says, and see if we'll need her services. Riley needs an IEP because he needs some services (social group, maybe even adapted PE). The school won't give him one, but they aren't following the 504 plan either. I'm finished playing with them.
We are also seeking another evaluation from a professional psychologist, since insurance will not pay for the Autism Center at Lucile Packard (Stanford). One of the doctors is from a place called Keystone Behavioral Pediatrics. My friend says they look good, so I will be calling over there tomorrow. I still have questions, and since Riley does not qualify for services from Regional Center, there's nobody to answer my questions!
To say that I am frustrated is an understatement. It's just never ending. If the school would step up and DO their job, it would be a lot better. I emailed the psychologist at the junior high last week, asking about the social group. Basically she dropped the ball. She told us at his 504 meeting, in October, that SHE was going to run a social group. She said she just needed to get permission from the parents of other kids who needed the service. Nothing has happened. I emailed her about it last week (I gave her quite a lot of time to get her shit together), and she said she is no longer able to do the group but that she was working with the head of special ed, to get one going. Yeah right. Perhaps an email to the head of special ed, from me, could speed things up? I'll try that tomorrow too. I am trying to work (district makes that hard for me to do as well), and I do have another child (what's his name again?), but I guess I will just have to plug on. I can't wait until Riley is out of that junior high, and I don't look forward to Quinn (oh yeah, that's his name) going at all. I am disillusioned with my district.