Noouua

It's been waaayyy too long since my last post, but things here have been crazy mazy (new job for Ben, Jeni as usual on over-load, not to mention Noa transitioning to Kindergarten and fighting insurance companies, etc...)

Even now, I will have to make this short but I wanted to be sure to post some video of Noa talking. Yes, I said TALKING. It has been such a startling and surprsing shift for her. It really started just about two weeks ago. She had been getting more verbal in general - but recently she started to really try to repeat words. She'll try to say pretty much any word at this point. She even repeats sighs. Tragically, she compulsively repeats the sound of Ben blowing his nose - which must not feel good because she bursts into tears afterward every single time.

Some words are becoming quite clear - in this video she says Noa. She is already better at it than she was when I took this - still it sound a bit more like Noooua. And truth be told, most of what she says can only be understood by a handful of her hand-servants. But there are some words like drink or lunch or potty which she will sometimes say without the accompanying sign. She clearly gets that the words are communicating specific things. It's very exciting stuff. Occassionally she will surprise us by repeating some random word quite clearly: rascal, thank you, beautiful. Just once but clear as a bell.

She also has had a rapid increase in signs which she also demonstrates here. She learned water after I showed it to her just a few times. And she retained it. Other new signs include: jacket, bad, 'k (as in okay), stand, want, blocks, walk, poop, brush, gloves, hi, wait and she also has signs for two of her bff's Claire and Lissa.

Unfortunately she still has a tendency to hit and punch herself in the head rather than use the sign for no (which she knows, but doesn't use) - or when she is frustrated that we don't understand her or when she doesn't get her way. She really hauls off and punches herself sometimes and then cries because it hurt. We're trying to work through those moments and help her understand that she can use her signs (no, bad, stop) -- but when she is upset it's hard to teach her these things and sometimes in her frustration she thinks that we're telling no, or bad, or stop and that makes her even more upset. So that is a big challenge.

Quick poop update - that's all much better though it was a struggle to get there. And speaking of poop, no movement (pun intended) with the insurance company. They took forever to send us the form that allows us to dispute their findings (we only just got it). People have asked me if the new health care bill will impact situations like ours. Truth? I don't know. I haven't heard anything that offers protection to disabled children. It's just ridiculous to cut off physical therapy to a disabled 5 year old because she hasn't shown enough improvement. Anyway.... that is a big ball of wax that I can't get started on now. That and the Board of Education. They recently told us that they'd like to put Noa in a classroom with a teacher, an aide and twelve students (no one-to-one para, which is what she has right now). This of course is not only absurd -- not just because she can't sit unattended, can't walk, can't take herself to the bathroom, can't feed herself and can't see or understand any of the lessons -- but also because it would be a huge liability for the school system. It would just not be safe. And so it remains, as always, an adventure...