Yesterday's IEP meeting felt, in a very surreal way, like entering the warped reality of a dysfunctional family in the throes of addiction. Now you might think that being married to a recovering sex addict, I'd be right in my element. I should be the queen of dealing with crazy people, but apparently I need several thousand more 12 Step meetings before I can handle an IEP meeting without feeling disoriented and doubtful of my own sanity by the end of it.
My son has a serious problem that interferes with his ability to learn at school. This problem is related to his autism, but goes above and beyond. It has been intractable to us and is proving to be even more so to his teachers. Three years ago, we asked the school district to provide him with extra help in this area, but they told us that my son did not qualify for services (without evaluating or assessing him) and they couldn't help us. This didn't seem quite right, but at the time we were new to the special ed game, our son was doing decently in this area in preschool, and of course, there were plenty of other things to work on. We hired our own private professionals and worked on this issue ourselves while the school concentrated on speech development, communication and social skills.
But things began to deteriorate; soon he had regressed with the therapists who led his social skills group, although he was still doing reasonably well for his preschool teacher and ABA therapists. We knew the transition to kindergarten would be difficult for him, and his preschool teacher advised us to contact his kindergarten teacher and principal to alert them to the strong possibility that the transition to a new place with new people would cause him to lose ground in this area. We did, and his preschool teacher did. We received assurances that they were aware of the problem and would address it aggressively.
My son's kindergarten teacher sent us an update each week for the first few months of school. And each week it was the same update: my son had regressed and was not making progress. Each week I would communicate to her that nothing was more important to me than this issue. It was great that he was making progress with social skills, it was great that he was talking to her, it was great that he was doing so well academically, but he was failing to make progress in an area that was key to his ability to attend school, to work, to succeed later in life.
I asked for an aide to help him. I volunteered to come help him. And I was stonewalled.
In one of my great moments of personal clarity, I made the excellent decision to hire an educational advocate. She helped us request an evaluation and documented everything with the idea that we could take the district to court if need be. So, finally, at yesterday's meeting, with the advocate and her audio recorder and her documentation present, everyone was suddenly concerned about my son. It was, with less than three weeks left in the school year, a very serious problem, a problem we need to address now, immediately, starting tomorrow! The principal smiled and talked a lot about how they had helped other children with similar problems, about how much the school was willing to do and how well they were capable of handling it, about how she fully understood my concerns because she had a child of her own who had a problem even more severe than my son's.
I left the meeting with that same insane, disoriented feeling one gets from dealing an addict. Like when my son was a baby, and my husband started viewing a lot of porn on the Internet and eventually progressed to adult video chats. When I found out and confronted him, he seemed confused about why I was so much more upset by the chats than by the pornography. In his mind, at the time, a live pornographic video chat and a porn video were the same. He seemed so confused and surprised at my anger that I started questioning myself: maybe he was right, maybe not knowing the difference between porn and chats was a reasonable mistake, maybe it was my fault for not communicating what types of things were upsetting to me, maybe he had been justified in using it because the birth of our son had left me physically unable to have sex for months, and maybe I hadn't communicated my needs clearly. But the problem wasn't with me or how I had communicated or what I had done. The problem was that he was in a different reality; he was crazy.
I left the IEP meeting thinking: Why haven't they done anything about this all year long? Did I really not communicate clearly? Did they really not know until now how serious this problem was? Was it my fault? Did I do something wrong?
But it's not me. They've had this child in their school, every day since August; they were fully aware of the problem and they know I've begged time and again for help. This wasn't an IEP meeting, it was a reality bending Lie-EP meeting, where the whole dysfunctional school family sat around a conference table pretending that everything is fine and everyone is doing a good job, just like a dysfunctional family sits around the dinner table as an alcoholic gets drunker and drunker, and they all pretend everything is fine and everyone is normal.
Even after all the years of work I've done, including my super ability to spot the crazy people among us, it's amazing that I can still sometimes leave a room full of warped people wondering if maybe I'm the crazy one.





Maybe that's the worst thing for those of us who have been too involved with crazy addicts...we've become convinced that we aren't entitled to anything, that we are ridiculously demanding, and that our perceptions of what is right and wrong are skewed. I can only imagine how much more frustrating that becomes when you're trying to advocate for your child...
Wow, what great stuff you have to WRITE about and I think it's great that you've found a writing therapy tool to work it out in your mind. I can tell you, you are not the crazy one. You seem rather sensible, and reasonable, considering.
I would suggest early intervention, if they haven't been involved ... we have an eating clinic at our local hospital that gets involved at just about any age. You probably tried this route, already, but thought I'd mention it.
Shawn, I love your comment! It reminds me of going to see the late Jean Shepherd perform. At the end of the performance he said, "Everybody has stories." I didn't feel like I did; I wished I did. So, I cursed myself with an interesting life, and now, boy, do I have a ton of material. Writers of the world, be jealous of me!
As for the eating thing, I have checked into local options, but there doesn't seem to be a clinic around that specializes in eating, although I know there are some great ones in other parts of the country. So, I have cobbled together my own group of private specialists (OT, speech therapist, nutritionist, pediatrician) to help.