I'm taking a break from my series about all the possible ways Janey became autistic to write about yesterday. We had a meeting with what our health plan calls Developmental Consultation Services. In essence, it was a meeting with a developmental pediatrician. We had sent her a lot of information about Janey---old IEPs and other evaluations, medical records, etc, and I filled out lots of forms about her. I had talked to a social worker on the phone about what I felt I most wanted from the service. I told them I wanted an accurate read on Janey's measurable intelligence. I feel like that's something I haven't been able to get. I know she has scattered skills, highs and lows, but I'd like to know where she stands based on regular testing, because I'd like to get an idea of what she is capable of, so I can best plan what kind of education would be best for her. I don't want her spending years and years trying to learn letters or shapes or colors she can't learn, while she could be learning more practical things, or enjoying the things in life she IS good at. The doctor was very nice and competent seeming, but explained that she wasn't fully qualified to do testing like that, but she'd do a little testing to help me get an idea. She did two types of tests with Janey---one where Janey had to point at one of four pictures to answer questions, like "Which bowl is full?" or "Which animal is big?" or "Where the triangle?" The other was a test of skills like building a block tower or stringing beads.
Janey co-operated fairly well for the first part. She was engaged, she echoed everything that was asked and she pointed to a picture in every case---not always really trying, I don't think, but doing what she thought she was being asked to. She did better in some parts that I would have guessed, but not as well in other parts. I have no idea how it will be scored (we go back in 2 weeks to hear about that) but it was interesting to watch. She was less engaged by the part that required fine motor skills, which surprised the tester. She noticed that Janey is more verbally oriented than you would guess for a girl that doesn't talk much, and remarked that is a bit unusual for an autistic child. It's the whole "She's supposed to think in pictures, but she thinks in words" bit.
A few things bugged me. One was that the testing book they used for the first part was spiral bound, and the spiral was half off the binding, creating an enticing Slinky-looking toy in Janey's eyes. She couldn't keep her hands off it, and that interfered with the testing. I can't understand why someone that tests autistic kids wouldn't realize that would be a problem and fix it. It wasted time and Janey's attention constantly reminding her not to touch it. Another was the stupid toys in the office, that were supposed to engage Janey while we talked. They were not suitable for kids with special needs. How hard would it be to get babyproof type toys for the toy box, since you are going to be dealing with kids that probably mouth toys? But that's just a little blog ranting!
In talking to the pediatrician, I got the feeling she was not a huge fan of inclusion or of Janey's school, which she has visited. She said she felt often that separate classrooms better served kids like Janey, with significant needs. That is something that might be true from a strictly academic viewpoint, and I tried to explain to her that that is one of the reasons I want to know what Janey is capable of. Truthfully, regardless of that, I would not move Janey to another school for almost any reason. It's partly for the same reason I picked schools for my boys, but even more so for Janey. Janey is happy at school. She is loved there. Although I know that with autism, there is supposed to be a sense of urgency about the early years, and I shouldn't think this way, but I think the main goal of elementary school is to have kids learn to be around people, learn to trust adults, learn to interact with others, and start, just start, learning academics. There is a lifetime for serious work, and believe me, once kids ("regular" kids like the boys) are in high school, there is PLENTY of hard work, far more than I ever had. For someone like Janey, who is not going to have a career, barring miracles, I find it even less important that she be learning as much as possible every moment. I am going to start worrying more about that when she is in 6th grade or so.
The other reason I'd not consider a change is how Janey reacted to missing a day of school, which she hardly ever does. She DID NOT take it well. Last night was the worst night in probably 2 years. She was hysterical, completely overcome with screaming and crying and fury. She woke at 3, still very upset. She understood---William and Freddy are at school, but I'm not. I of course tried to prepare her, to talk to her, but her worry and fury is not verbalized or able to be helped by talk. It's the routine. For all she knows, we are never going to school again when we don't go for a day. And that is NOT RIGHT, in her eyes. I'm going to try hard not to ever schedule an appointment during a school day again.
Overall, yesterday did something interesting for me. It made me realize I am getting more confident about my knowledge of Janey and my vision of what I want her world to be like. I'm able to say more definitively what I want for her and don't want. I am less swayed by "experts", even kind and knowledgable experts like the doctor yesterday. It was an interesting day in that way.