After 2 months and multiple tries, the Fragile X test results finally came back. And they are normal. So now we just wait to see what the developmental ped says, but it will take another 6 months to get in there anyway, so we are back to waiting. The next 3 months will be spent getting ready for IEP transition.
Yesterday at church, Sweets was sort of playing along side another little girl. The other girl was a lot bigger than Sweets and was talking in easily understood complete sentences. I asked her mom how old she was, and it turns out she is only 2 months older than Sweets. Wow. When I said that to the mom, she asked right away, "Do you know what she has?" So I guess it was obvious to her that Sweets must "have" something. I think that might have been the first time someone has asked me something like that. I wasn't offended or anything, and I told her about the different tests we've done and how she doesn't have any of those things anyway, but we don't know what it is. I guess it just surprised me a little, and made me realize how behind she is. Sometimes it's hard to tell because she goes to the developmental preschool now, so a lot of those kids are delayed too. And a lot of them are delayed a lot more than Sweets. I don't have a good frame of reference for "typical" anymore.
Starting this month, we are getting ready for "transition" from early intervention to the school system program. We have our "intake" meeting next Friday. They are going to screen and evaluate Sweets after that, and I'm going to take her to some independent evals as well for backup. I've been wondering lately whether she will even qualify for IEP. She has to be 30% delayed to qualify, which is a whole year behind at 3 years old. Is she a whole year behind? I don't know. I really have no idea how far behind she is at this point, because I don't know what is typical for comparison.
I've been worried that she won't qualify, and that she will lose services. Not that I want her to be more delayed, but I do want her to keep her services. One person told me that even if she does qualify, she'd only get 1x30 minutes of speech, where she gets 2x45 right now. Another parent told me that she didn't think her son was going to qualify, but he did, and he is still getting 2x45 though, so I know it is possible. I am not sure if the school evaluation will be biased against providing services, because that way they don't have to pay for them. Or maybe that's just pessimistic of me. In any case, we are doing outside evals too. I know that I can challenge their evals if they come back saying she doesn't qualify, if I have one that says she does. I also just like having a second opinion.
So, we are going tomorrow for a speech eval at NC eye and ear, and we have another speech eval booked in Feb at Duke. I'd like to have a cognitive eval done on her too, but I don't really know where to go for that yet, besides the developmental ped that we can't get into for several more months. I thought that the school was going to do that one, but they said they are doing an "educational" eval, not a "cognitive" one. And I don't even know the difference.
I feel like I don't really understand as much as I'd like about this process, though I've read everything they've given me on it. I feel like in the past I saw lots of IEP workshops being offered, and I didn't go because it seemed so far away. Now that I want to go, I can't find any.