Good Clean Fun!

Whenever I see Noa playing with water like this, it's hard not to think about "The Miracle Worker." Of course it makes perfect sense that "water" was Helen Keller's first word - water provides so much imput! Noa has been big on washing hands for a while now (she does sign for hand-washing), but this new trick is fairly recent and quite a funny and ingenius way to get the water into her mouth. Strangely, while she'll drink water from the sink or a shower or the swimming pool (try as we may to stop her) she absolutely will not drink it from a bottle.

Just to update on the signing situation - the doctor put Noa on a 2 week course of Claratin to try to clear out the liquid behind ear drum, so we're working on that. In the meantime we've gotten a preliminary report from the audiologist which we hope will be of some help since it basically says that Noa doesn't respond normally to their tests (which require the subject to LOOK at the noise, or turn toward the noise, which of course she doesn't do but perhaps it'll be enough for the Board of Ed to give in). The audiologist did mention that Noa communicates with sign and that if she knew more sign language they'd have better luck testing her. So, thanks audiologist so trying to make the point for us - any little bit helps!

Ben and I were to start our sign language lessons last Tuesday, but we had to re-schedule so we're starting this Tuesday.

IN OTHER NEWS my mom recently sent me a link so some information about a really cool theater group called Nalaga'at that does theater with the deaf-blind. It's run by the same folks that run the famous restaurant Blackout in which all the servers are blind and the restaurant is entirely in the dark. Anyway - this theater group blew me away!

They are working to convey the world as they experience and have come up with fantastic ways to do create theater that speaks to their experiences. As one might imagine, I've thought quite a bit about what theater for the blind would be (not just descriping what happens, but making the experience more involved). At the end of the day, I think this is theater for the hearing-sighted by the deaf-blind... but I think it hold a lot of things that would be great if you were deaf or blind or deaf-blind and it certainly helped my thinking about it. Anyway, I invite... no encourage... you to check out clips from their performance. It's way cool: http://www.nalagaat.org.il/en/

Onward....

So yesterday we took Noa for the much anticipated hearing test...

Pretty promptly the audiologist found that Noa had some fluid in her ears - more in the right than the left - that would make it impossible to the ABA Test which would tell us if she had hearing issue due to nuerological problems.
The fluid in the ears is not unusal for kids.

BUT now we have to go to the doctor to see how they want to deal with it - there are apparently a number of options, including some kind of lancing of the area to release the fluid which is something that would require sedation. Noa sees the the doctor today, so maybe we'll learn more.

They did try to do at least one of the tests. They put the kid in a sound proof room and they have toys placed around the room that make noise and they see if the kid turns to look at the toys... um... okay... I'm guessing that most of you are already seeing how this test isn't going to work for Noa. She doesn't turn toward sounds. Why would she??? Though she is learning to turn in the direction of who she is talking (signing) to. And she is learning to hand things in the direction of the person she is handing something to.

We explained our situation to the audiologist who - like EVERYONE in the universe who has met Noa - felt that the audiological test should be immaterial and that it was clear that sign language was her mode of communication and that her being mute could have nothing to do with hearing. Yes, yes, an ever-growing choir preaching to itself!

In any case, the audiologist will write up a preliminary report and hopefully it will be at least some use in moving forward since it will say that they couldn't do the test because she didn't respond to the sounds by looking.

Noa took it all like a champ. She hated having things in her ears and she screamed her head off but she didn't fight me and didn't pull the things out - and hey, if I thought I could get away with screaming, I'd do it a lot more often to. Then after putting up with all that I had to pull her out of school today to take her to the dentist (more screaming, but otherwise well-behaved and the doctor was very happy with our tooth-brushing work)... and when she gets home we take her to the doctor to look at her ears. What fun!!!

The photos above of are of Noa signing one of her new words "play."
Oh - and next week, Ben and I officially start working with a sign language tutor!

Gogo Girl!

I know. I know. It's been way too long. Life has conspired against my blogging ambitions these past two weeks - which is a shame because there is so much to report! This video is actually from a couple of weeks ago. As you can see, Noa has discovered the wonder of wood flooring - she can really get some steam up! She doesn't quite make it to the book in this clip - but she does do some nice exploring and perhaps you get a glimpse of how she still really needs to learn how to follow a sound to an object. She is close, but there is still some confusion.

One of her favorite new games - which she demonstrates in the video - is the handing-you-a-bit-of-nothing game. It actually started with handing me a hair from her face, or a bit of fluff off the rug. But it became so much fun that she decided it didn't matter if she actually had something to hand off or not. It's a fun game, and it's one that involves playing and interacting with others which is really a big step for her.

She has picking up some new signs - which is terrific - but also has been getting frustrated about the things that she can't say - which has been less than terrific. Some bad behaviors re-emerge in that frustration: hitting herself in the head, biting her shirt sleeve (many of her shirts have some bite holes in them from this) and, most upsetting, just plain trying to pound her head onto whatever table or floor is in front of her. It's hard to get her attention and encourage her to communicate with her signs when she is in that upset state... but we just keep working on it.

New signs include: play and change my diaper... and there is another one, but I'm just spacing it out right now.

When I last blogged we were about to have a meeting with the school about getting sign language for Noa - which is so so crucial. We had the meeting with the school and luckily, everyone as the school agrees that this is the right path... the only problem is how to approach the school board.

The board really wants us to prove that she has a hearing loss... and we all know she can hear (though what and how she hears are certainly in question). All along Ben and I have felt that it isn't really material because not hearing and not talking are not necessarily connected (google "apraxia" or "aphasia" for more on that). We've also been resistent to the hearing test because they would have to knock her out. BUT at the end of the day, we went ahead and made an appt. for the hearing test (next Wednesday, followed by the dentist on Thursday... poor kid!).

The fact of the matter is that if they can prove a hearing loss - or a processing issue (which may be harder to prove) - then we'll be able to prove the board with what they feel they need. And apparently they have a way to do it now without knocking her out, we'll see if that works.

If they don't have any hearing loss... then we have to go after her having a brain injury that keeps her mute which is very difficult to prove with certainity because there are no tests that can really prove that in the same way a hearing test can prove hearing loss. Just one of those things we just don't know so much about: where does language, and the ability to create and expressive language, come from? Oh so many things we don't know...

Hopefully there will not be such a big gap between posts next time!