Fragile X Friday - Updates

So both a lot and a little has been going on in terms of Holly's therapy, so I will post a few updates here. Since she turned two this month we had her Annual IFSP. It actually went surprisingly well. She has at least a 33% delay in all domains, so she qualifies for all current services. Her speech is more difficult to describe, according to the report her receptive language is in the 6th percentile, and her expressive is 2nd percentile. The age equivalents are 20 months and 15 months respectively.But both of these include the use of signing as language, since it is technically a language. So the third domain is speech, which is supposed to be specifically related to verbalization. The test doesn't score it formally so the therapist reported it as between 9-18 months (yes broad I know) since she has some scattered skills. So Speech is our area of largest concern. She isn't really verbal yet, though she is beginning to try to speak again. See at Thanksgiving she could say "Go Go Go," actually in September she could say that. But she doesn't say it now.She rarely even say's mama or dada or baba, she uses the signs, because they are very clear and specific, sometimes I guess with her words, we don't differentiate between babbling and an actual request. Also, we were out of town over Christmas and she went 5 weeks without therapy. When we returned she had a new therapist, who not only did she have to get used to, she also had a very different style and decided to focus on teaching Holly the pecs system.The theory being that it takes her Motor Planning "Energy" to make a sign, and it doesn't take the same effort to present a picture, so upon receiving the picture we can encourage the "Speech" and creating a sound, and she can use the motor planning "Energy" on her mouth.The thing is, Holly loves signs, she has maybe 40. But she is not very articulate. Drive, Star, Bike all look the same, Horse, and Daddy look the same. She doesn't have the fine motor skills to really learn advanced words, but she watches baby signing times and learns them on her own.So the next problem is she asks us or tells us something with a sign, but we don't know all the time what the sign is, either we don't know it at all, or can't tell what sign she is doing, so we are frustrated. So with all of this going on, we made a request at her IFSP to increase Holly's speech therapy by 1 hour a week. This would allow the therapist time to deal with her oral aversion and also focus more on speech.But there are other issues too. Since Holly has a 33% delay in her fine motor skills, we requested that she get an official OT eval and possibly add an OT to her list of therapists. Katie our Infant Development Specialist is an OT, so she gets the advantage of an OT, but Katie has a lot of other things to do with her time. In Particular Katie works with her on a lot of her Sensory issues, and helps us in navigating what they specifically are, also with self help, social, and an over view of other domains.So having a 4th person focus on OT skills would free up Katie's time to work on other items. The thing is, the Speech increase has to go to an exception committee, which I think happened today. The regional center is in the process of moving there offices, so it is a little hectic over there, I haven't heard from my case worker so I am not sure if the OT Eval needs to be approved by the committee as well. But I hope to have that happen soon.So then, to through another wrench into the system, we are looking into a new program called Small Voices. This was recommended to us by our Case Worker, and it is actually just like the pre-school scenario I was looking for a few months back. It is 3 days a week, Tue/Wed/Thurs from 9:30-11:30 each morning. It is a parent Participation program, at least at first, but eventually I might be able to drop Holly off, just like real preschool. She only qualifies until she is 3, so this might allow her the opportunity to prepare for really preschool at three.So here is the Catch, if we switch to small voices, then we loose our Infant Development Specialist, whom we love (Katie) and has been seeing Holly since she was three months old. But the program has an IDS, and OT, and a Speech therapist, each day two of the three specialists plus an aide are in the classroom with about 10 children. We would go basically from 2 hours a one on one therapy a week, to 6 hours of group therapy. But it is very scheduled and does a lot of coll things.We are going to visit for a day in two weeks, to see if we like it, but I talked to the coordinator for about 45 minutes and it sounds like everything I had wanted before I changed my mind about preschool, so now I don't know. It's free, its only 6 hours, and It would provide structure, routine, socialization in a group play setting, sensory and feeding activities, self help.But it will be a lot to juggle, (not to mention having to get up and arrive by 9:30) if we are doing this three mornings a week, and then we have swim and gym on Fridays and then potentially four additional one on one therapy sessions a week. It will make a big dent in our social schedule, because she will basically come home and nap, so we will only have afternoons free.I guess there will be more updates with details on our visit, and hopefully with news from the case workers, and perhaps even information about her OT eval. I think the last thing that I will mention is that we have our next appointment to the UC Davis mind Institute on April 22nd. At that time Holly will get an autism assessment since she is two. And participate int he Fragile X Baby Study.We have also increased her Sertraline from .15 to .25 on a trial basis about a week ago, so Dr. Hagerman will assess the increase and let us know if we should stay the same, increase more, or decrease back down. Holly still does experience quite a bit of anxiety, though I push her a lot more then the parent's of many typical kids push there children because we are so busy all the time. But there has not been that Language explosion we were hoping for yet, though I do think there is definitely a big decrease in the anxiety, even though it is still present.The other issue is Holly's ears. Her hearing tested fine, but she had an ear infection when we went to our two year pediatrician visit. We just got over two ear infections not 3-4 weeks earlier, so perhaps they never actually healed, or maybe it was a new infection. It is hard to stay. So the doctor has her on antibiotics again, though she just finished them, and we go back next Tuesday. If she isn't completely healed, and there is still fluid she wants to aggressively push tubes.She says that the infections and the fluid cause a speech delay, so when we are working really hard to improve her speech these are working against us, and sometimes Holly tries to talk, like say the word Bear, but is sounds like "baaa rrr" So it is possible that she hears Bear in that way. When I asked the speech therapist about it, she indicated that in the banana curve of audible sounds when there is fluid in your ears there is a loss of about 30%.So if she continues to have this issue when she is developing speech it will be harder an harder to teach her to speck, and in particular in a clear manner. So while I am really nervous about tubes and a procedure like this, it may be the best thing for her. More to come when some of these issues will hopefully have an outcome.