This week started off horribly but it's ending on a great note. On Friday afternoon we met with the itinerant teacher here in our school district and one of the occupational therapists. They were fantastic. I'd given them some website links where they could learn more about Sanfilippo syndrome and the teacher came with pages of printed out material and questions. After all the advocating I've had to do it's nice to meet others who are stepping up. We had met such a wonderful group of educators in Washington, I was so nervous about meeting people here in our new school district. Olivia's IEP was written in Washington state and then I thought that we had updated it in Durham county through the Durham Hospital School. It turns out that it wasn't really updated correctly. I think that the hospital school does a good job of providing services on an interim basis but it's become pretty obvious that they weren't really sure what to do with Olivia's IEP. Basically we're having to start over, using the real IEP from Washington. We talked about Olivia's goals and then I gave them copies all of the evaluations that we have. We also talked about the fact that I refuse to have Olivia go through another series of developmental tests for at least a year. Over the last year Olivia has had developmental testing in one form or another (the Mullen, the Peabody, the Battelle) so many times that I don't think any of the results are valid at this point. She was tested in March, evaluated again in April, then in May as part of her IEP creation, in July by in-patient therapists in the hospital, in October by therapists when we went outpatient who provided services in Durham, in December by therapists when we moved here to Fayetteville, and again this past week at UNC. That's 7 times in the last year. They agreed to just use all of the other evaluations rather than evaluate again. I refuse to accept the "we need to have our own record" line any more.
Olivia wasn't super cooperative today but she did warm up to the teacher and by the end of the visit she was happily sitting in her lap. With Olivia's busy therapy schedule it will be difficult to fit in school time as well but I think she'll be able to have school time at least once a week starting next week. I'll have to go to another IEP meeting in a couple of weeks but then we should have things in place for the rest of this school year. I am really looking forward to the 2010-2011 school year when Olivia will hopefully be able to attend school rather than having to have home based therapy and instruction.
