Mark This Day!

Okay, Okay, I know I just posted an entry a few hours ago, but just before bedtime Noa did something really amazing. Drum roll please............

Today - Wednesday, Sept. 21st - at 6 1/2 years old - for the first time, Noa stood up from the floor all by herself!!!!

Why this photo? Because she was sitting on the floor and stood up to play the piano that is on the table behind her in this photo.

She was chilling out on the floor playing with her blocks, much as she is in this photo, while I was in the kitchen washing dishes when she scooched herself over to the piano reached up to play with the keys. She made this noise that she sometimes makes when she shines "more" so I asked her "more what?"

She signed and said "piano."

I asked her "do you want to stand up?"

She said "san-up" and then, before I could even get to her she started to stand up. I got there in time to spot her - just in case - but she got all the way up on her own. Yes, she did use the table to steady herself, but frankly it's not a terribly strong, stable table. She was very proud of herself, and so was I!

Bruiser

Oh what a month! September: back to school, new classroom, new teacher, new friends, new bus that shows up repeatedly at 9:15 when school starts at 9:00... in Westchester! But no, Noa doesn't look like this because she was bullied in school or on the bus. She actually just has some funky dry skin on her eye, and then lost a front tooth!

The tooth had been loose for a few days. At one point - on Sunday - she tried to pull it out but it didn't want to come. It bled a bit, but it stayed in place. A few hours later in the bath she got mad at me because the water was too hot, or too cold, or too soft, or too hard... it was too something and I couldn't figure it out so she did what she sometimes does and gave herself a little jab in the chin (I've explained to that it doesn't hurt me when she does that, but she does it nonetheless). In any case, she knocked the tooth right out!

There was a little blood, and at first she kind of freaked out. She really seemed to get the fact that she'd just lost a piece of her body that had been there just moments before (and I think she liked playing with it). But I just kept reassuring her that it was it alright - that it was supposed to happen and it meant she was a big girl and within a couple of minutes she was laughing and it was all very funny.

On Monday we went to the doctor and got some cream for the eye. But she's still kind of sporting that tough kid look. The other front tooth is wiggling up a storm and we expect it to go at any moment. Her teeth tend to hang in there a while since she doesn't eat solid food.

The other excitement Monday was a visit from Sam Morgan of the NYS Deaf-Blind Project. After YEARS of trying to get Noa in, she has finally been accepted for services! This is a huge deal for all of us - as a blind child who communicates mostly with sign, she is a bit of an odd duck. She just doesn't fit any easy definition. She seems to hear technically - but processing what she hears and/or how to speak is definitely a challenge for her. But all these things have Federal definitions (and they get funding by serving people who fit into that definition) so for odd ducks, it's a battle. ANYWAY - this gives us access to the kind of services and support that we've been longing for - and that Noa really needs: support at school to help her teachers and therapists work with her, and support at home for Noa and for us! One of the greatest challenges we face is that Noa is just plain smart - but her communication skills can't keep up with her cognitive abilities, and filling in those gaps for kids who can't see and who don't follow what they hear is really tough.

We've all seen frustrated kids who can't quite express themselves - this frustration ultimately pushes them to watch and listen to others so they can learn these things, but Noa can't do that. And honestly, the timing for this couldn't be better because she really is in a place of some intense cognitive growth and she gets very frustrated about not being able to tell me what she wants. Sometimes after spending a long time, with me listing things she might want, she just signs that she is sad - and that is really heart-breaking. I tell her that I'm sad too. She is really patient with us, and I'm looking forward to getting the help we need to get her to the next level!

Flushing Queen

FINALLY - I figured out the video thing!!!!

** I has come to my attention that this video does not work on everyone's computer (despite my nearly pulling my hair out to make it work!). Unfortunately the only real solution I can figure right now is going to YouTube.com and searching "Flushing Queen." **

Okay, this is fun. You can see that we have arm rests on the potty now - so Noa can pull herself up on to the potty by herself (no step stool needed anymore). She also likes to stand on her own, and pull up her diaper and pants - and can even zip her pants. She also likes to reach back and hold Mommy's hand she flushes the toilet. But she never flushed it herself... until now.

Imagine our surprise when - having left Noa alone for a few minutes on the potty so we could pick up some toys - we hear a resounding FLUSH. We ran into the bathroom only to find this little munchkin giggling away and rocking out to the sound of the toilet bowl re-filling. As soon as it quieted, she reached back and flushed it again. That's when I got the video camera. I suspected she wasn't finished with her new game and I was right.

I can't help but think back to the days B.N. when our pride and joy was our toilet-using cat Shekhina. People always asked us if he flushed. "Lord no!" we exclaim. "If he could flush that's all he'd do all day."

Miss Fancy Pants

Back to school and Noa is already asserting her "big-girlness"! The photo here was actually taken a few weeks ago when Grammy and Grampy were visiting - but it's such a great picture of Noa being her hip, cool self and it really shows off how big she is standing next to me.

Monkeying Around

Now that I've found a way to connect you all to video (even if I can't post it directly on the blog), I'll try to post some of the stuff I've been meaning to post for a while. But here is a nice clip from yesterday -

http://www.youtube.com/watch?v=Cswo992u4Pk

Check out out Noa looks from side-to-side to find the Monkey's face. She has been doing more and more of this. I suspect she is "seeing" something, but as you can see the Monkey's head is always touching her so she can follow it that way - AND she gets that the head (or face) is something to look in the direction of. As simple as that sounds, that's a big deal. After all, where do we get the idea that we should look at a person's face? For us the face gives us important information (identity, but also expression). Blind kids tend to look down (esp. kids like Noa for whom it might be preferable to not have all the visual clutter of looking up which can be distracting). But Noa really gets faces and also turns her face to people more now too. It's actually hard to convey what a big deal that is for us - just emotionally to have her attending to us by turning toward us, it's just a level of interaction that is nice to have - it's a connection even though its not a visual one (if that makes sense).

The other cool thing is that Noa totally made this game up by herself. I just happened to be able to snag the camera and catch it.

FINALLY - WE HAVE VIDEO!!!

Well, sort of.

The video isn't here, it's on YouTube. BUT it's there.

You'll have to cut and paste the link - yes, I'm sure there is a way to create a link, but I'm really truly done with trying to make it happen - and I'm pretty sure it'll be worth a few extra clicks of the mouse to get to see....

Noa's new-found independence: getting into her wheelchair by herself!

http://youtu.be/NYkhUajuc4s

Other new tricks include finding her sit n' spin and getting on and off it by herself and getting out of bed and/or off the couch by herself (luckily she got out of our bed by herself to pick up a stuff animal, she realized that she couldn't reach down to the floor by herself and woke up Daddy to help her). She also likes to have her bin of stuffed animals next to the bed so she can pick which ones she wants by herself. The ones she doesn't want, she throws at the window or, more precisely, at the blinds which makes a very funny and apparently satisfying noise.

Noa is off of school now for a couple weeks before the regular school year starts up - so I'm sure they'll be lots to report. Will I find the time to actually report it? Stay tuned to find out...

Sophisticated Lady

Phew! How nice to shift back into talking about Noa - instead of all the yucky battles that we have to fight (I'm sure there will be more, but right now I'm enjoying a quiet moment).

PLUS there are so many great things to share! Here is Noa listing to Daddy read to her. She really seems to like this particular book: Don Juan by Lord Byron. Yep. She really likes it. But she's always had sophisticated tastes. When she was younger some therapists thought she had no attention span because she had no patience for Mary Had a Little Lamb - the truth is what she really wanted to listen to was Pictures at an Exhibition, or maybe something by The Silk Road Ensemble. I took her to listen to them live when she was about two years old. She did a solo in a family drum circle with them and ended up really hitting it off with them - later she got to try a bunch of their instruments. They were very cool.

ANYWAY - while she has always had very sophisticated taste in some things, she has been way behind the curve in so many things that are just basic kiddie milstones, like putting food in your mouth or rolling over... both of which she did last week all on her own!

While she will eat with a spoon, she has never put food to her mouth with her fingers - or licked food off her fingers. But she has been using some hand lotions with different smells, so I was able to get her finger near her mouth this week when she accidently touched her food (she would never let me put her finger in the food on purpose!) And once it was up there, just a little step to touching her lip and realizing that it was yummy. We got 5 or 6 fingers of food in before she decided she'd done enough, but it was a great start!

Then later that afternoon, she just did a little log-roll all by herself on the way to trying to stand up, which was great. Tummy time used to be the most tragic time of all for her and she always hated it; never learned to crawl at all - and while she will occassionally get to hands and knees now, I'd never seen her just roll like that.

Over all, just a lot more self-motivation, which is great but has led to some interesting discoveries as she becomes more adventureous about moving around the apartment. Like the other week when I left her in her play area to take a shower (used to always be a safe bet) and got out my very short shower to find her by the front door, having knocked over an umbrellas stand, playing with a bat. Guess it's time to do that child-proofing other parents are always going on about... hm.