By the way, this will be a bit acronym heavy. I'm adding an acronym key to this blog. I'm lazy. Don't judge me.
Yesterday was Geri's IEP assessment with the school district. I have been working on setting this up not so much because I wanted the school district to "do" anything for her (although I was kinda hoping...) but because I need it to go to other organizations for help. Her IEP will be the document of her various concerns all in one place with lots of official titles and signatures so I can wave it around and yell "Here she is!! Here's what she needs!!! Now HELP her!!"
The appointment was a two-hour play-based assessment, and it went ok. It was sort of weird, though. It's hard to play normally and have her behave like her normal, Geri-berry self when there's 6 people crowded around her in a strange environment asking me constant questions. The group involved a mobility teacher, two TVIs, a school nurse, a Sp Ed teacher, someone I think was an assistant, some guy who I thought was facilities when I saw him wandering in the hallways but then he came in and watched and took notes for a while so I guess he was a part of the the team?, and a butcher and a baker and a candlestick maker. We were in a little area with a nice soft play rug and lots of toys and they spent a lot of time handing Geri toys and getting her to interact with them.
Again, it's weird having a team of people quiz you about your child and watch her play with you. I felt like I was being given a test or something. Sometimes I wasn't able to answer their questions as well as they wanted me to, but I was trying to be as honest as I could. For example, the mobility lady asked me "If she is in one part of the house and you tell her to go to another location, will she? Does she know where that other location is?" Well, that's sort of complicated... she doesn't walk and she is sort of resistant to the exploring lately (post-op and such, with the previous clinginess) so it's not like she goes from one place to another without us very much at all. She seems to know where different places are, especially the potty, but when she is holding my hands and we're walking there it's sort of hard to tell if she's leading me or I'm cueing her. Another tough question "Does she communicate verbally or physically?" Well, that's tough to say. She gets her point across, that's for darned sure. But when I look at things in hindsight, I can not be 100% sure if her vocalizations told me or her gestures and body language. I think it's more gestures right now, but her words are becoming more important.
This became the theme, really, for all the other people who came back to talk to us. A lot of talk about how she needs to learn independence, but no assistance available until we enroll her in school and no help or ideas on how to do things ourselves. I really shouldn't have gotten my hopes up, in retrospect. We knew this was just a stepping-stone, the magical document we need to get help from TRE and CSDB. Still, it's disappointing to navigate the red tape with my child in tow.
I think the other big thing we got out of this is certainty about enrolling Geri in CSDB. We were wondering if we should "mainstream" her, but part of the IEP is a breakdown of how much special services she would get a week. In a 10+ hour week of school, she'd get about 5.5 hours of special instruction immersed in a sighter classroom. That just doesn't seem like enough to me, especially if we have a school designed for visually impaired kids with similar peers right up the street. I'm also concerned about her being mainstreamed with sighted peers of her same age, since she can be fearful of other kids. It's not so much about protecting her from them as knowing that she's not likely to learn if she's afraid, and she's likely to be afraid of a group of sighted kiddos. Also I want her to be in a classroom with materials that are going to be more accessible and useful for her.
So, that's another step in the process down. Next week I'll be heading over to TRE to find out about their resources and about getting supplemental Medicaid for her. I think we now have everything we need for them - the IEP, letters from doctors, birth certificate, SSN. Hopefully we can make some progress there... and the wait list for services won't be too long!