More Than You Ever Wanted to Know...

While I update you on our progress in the area of toilet-training, I hope you'll enjoy this short video of Noa walking. As you can see she is feeling very confident in her walker. You'll see that about half-way through she starts just swinging her foot back and forth - sort of like a ballet dancer at the bar. She gets caught in this movement sometimes - she knows it's the right movement for walking but doesn't always get that you also gave to alternate feet and keep some forward motion going in order to get somewhere.

(warning: the following material may not be suitable for people of taste and breeding)

So in the wonderful world of potty training, we've had 2 banner days! Friday night just was we were getting ready for bed time I put Noa on her little training potty and I had this idea. Generally she.... does her business... just during or after her bedtime story (we try not to take it as a comment). For the past few weeks, I've been using bedtime to work on memorizing "The Cremation of Sam McGee" (watch Idaho/campfire folks!) so I figured she'd recognize it as the signal that bedtime was near. I got about a verse and a half in and sure enough.... #1! (we'd caught a few lucky #2's in the past because, well, she makes a face which is kind of a clue.)

Just as I suspected, Noa thought this was the funniest thing in the world - the sound in the little plastic potty, the feeling of freedom and a few other things I won't mention and you can all imagine (or not). We both laughed our heads off and clapped and had a great time. Last night - same time - took a bit longer but the same thing. Again, hysterically funny. Very exciting stuff.

In other bathroom news, Noa has taken to helping us out during changing times by trying to grab her (ahem) used diaper and fling it across the room. And she's fast. Sadly... Daddy was not aware of this when he tried to change her yesterday afternoon. And this was followed by a bath for everyone. Again, I'll let your imaginations take you where they will (or not).

So that's it for the bathroom update. I hope you enjoyed it.

Finally, the proof!!!

I have to tell you all that this video is already old news... but one step at a time. This is from sometime during spring break when, with absolutely no ceremony or screams, she left the bottle behind.

And I figured I ought to post this before I jump ahead to the most recent news. Noa is in one of those learning leaps that is oh-so-exciting (and exhausting) for us and this is really just the beginning. But it's also been a very busy time with Daddy starting a new job, Mommy trying to wrap up the semester at school and get things launched for Idaho in June and... sadly, the passing away of our 13-year-old cat Shekhina last weekend. People have asked me if Noa gets that Shekky is gone and to tell the truth I'm not really sure. She always seemed to think he was a giant stuff animal - every time he'd brush by her she'd make the sign for "make that toy kiss me."

More video and news coming...

Slurpy Spice!

Well, it's official, Noa's a rock star!! After long meetings at school with TEAMS of people ready to deal with the terror of Noa fighting the switch to the straw cup... Noa made the transition painlessly and without incident over her spring break, a full week and a half before we had planned to take the bottle away for good. Oh kids!
I do have a video of this but for some reason I haven't been able to post it... I'll try again later.
Noa is doing great with the straw - but she won't pick up the cup. Every once in a while she'll touch the cup. I've seen her pull it closer to her, I've seen her push it away... I've even seen her bend herself over entirely to get a sip without picking it up off the floor, but she WILL NOT pick it up. We figure we'll get there eventually and we're just so glad to be done with the bottle!
Noa has been a busy girl (and so has Mommy, thus the delay in posting this wonderful news) - she is doing much better with her walking, sometimes taking a few steps while only holding one hand. And she loves to hang out in her walker - though she hasn't quite gotten the idea that she doesn't need one of use to pull it forward in order for her to walk. But with Ben's help earlier this week, Noa walked to the playground in our building with the walker - that back - which is a very long trip for her! She has also started to play the xylophone - the big deal here is not just using the sticks to play, it's figuring out that she has to take her hand off the xylophone in order for it to sound good. In other big news is that we're starting to work on toilet training --- we know this could take a while, we've had a few very accidental successes, which for the sake of good taste I will not go into in detail. But frankly, she is a big girl and diapers don't quite contain her anymore, especially at night which is when she tends to relax and just... let it all flow. We've had some nights in which we have to change her and her sheets 3 or 4 times (we've had to buy more sheets just to keep up).

Just because I don't want to end on that lovely note - I'll also add that we've had some great reports from school of Noa actually starting to play some with her peers. Until now, other kids held very little interest. They don't follow directions well (like us grown ups who are putty in her hands). So this is a wonderful development - she is even showing patience when the playing doesn't go her way.

Oh, last note - I'm in a sign language class now which has been very cool. It's really a class for grown ups to talk to grown ups, but I figured I should just learn to be fluent. Ben and I tried tutoring - so we could learn the things that pertained more to Noa, but the school uses its own sign language (modified for the kids) and so it was just to confusing.

Wrapped Around Her Finger...

So this is what happens when Daddy gets up with Noa in the morning. I come in to the living room, after having enjoyed an extra hour or so of sleep to find that Noa has convinced Daddy to hold not one, but two, vibrating massagers on her head while she leans back on him as if he's a Barca Lounger and chugs some Pedisure, hugs her fav stuffed horse and flips through a book. In fact, in the picture to the far right, she is even asking for a kiss to top it all off! Not bad for a kid who can't speak!

Sure, Daddy's a push-over, but Noa's powers of communication have found some new and creative outlets. Later this same weekend, she went to the pool with her fav swim-buddy Jess and taught her the new pool-signs she had come with. She told Jess she wanted to "sleep" when she wanted to float on her back; that she wanted "drink" when she wanted to be thrown in the air (which means that she dunks her head and gets a mouthful of pool water - yummy); and "pick-up" when she just wanted Jess to carry her around the pool. There is a great logic to this - and it seems to re-enforce what the guy who did our communication evaluation thinks which is that her communication issues are not cognitive, they are about not having the language tools she needs. But she sure came up with some creative solutions. I wish I could explain to those of you who have not spent tons of time with Noa how she manages to teach us these things but everyone who works with her has experienced this.

In other big news, we've laid out a plan to get Noa off the bottle, as I like to say. This has been tough because she won't put anything but a bottle in her mouth. The plan - to start in about two weeks - is to go cold turkey. No bottle. I started talking to her about this about a week ago - that she was a big girl and almost finished with the bottle - and we started to introduce a new straw cup that she would very politely hand back to me every time I gave it to her. Then much to our surprise, this weekend, she let me put the straw in her mouth. I squeezed the Pedisure into her mouth and though she didn't love the idea, she put up with it. Yesterday with Melissa, she used the straw cup a few times (though Melissa had to squeeze it for her) and today she was taking the straw happily and sucking through the straw herself. This is great because now we have some time for her to get used to the idea before the "mamba" as we call it disappears completely.

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!