How Far We've Come...

Well we've had quite a year in the Land of Noa. The progress can feel slow sometimes, but looking back at my posts from early January 2011, the progress is enormous. Last year we spent much of the Christmas season trying to figure out what "sheee" and "shaaaaw" meant and Noa was very frustrated. We never did figure that out.

This year she's got a ton more words and can figure out how to ask for most anything she wants (though often will need us to list those things - but she knows the signs and we're working on getting her to intiate them rather than waiting for us). The frustration is much reduced.

She's also making huge strides in conceptual thinking - she loves to find and recognize shapes, sort her blocks and other toys into their proper bins, and she gets that the little bumps on the page tell us a story! In the photo above she is holding one of her new Brillo Blocks (Christmas present) while I read her favorite night time book "The Story of Ferndinand" - she LOVES that book! And in the photo below she is enjoying her first read of "Madeline" which was a gift from Grammy and Grampy.

She still loves throwing blocks which is getting to be a problem because she's so darn strong! She actually has good aim too. She listens for where people are and then tries to hit them. It's great that she is getting a sense of direction... still, it can hurt! And she laughs if you say "ouch." She also laughs are her own farts. She is very sophisticated like that.

Other big developments: Noa ends the year really self-feeding, though scooping can still be a challenge. She can't really see if she has anything on the spoon and can't tell is stuff is dripping or falling off the spoon... until it falls, but we're working on that. We're also moving toward more time in big-girl diapers (otherwise known as underwear). Noa is actually pretty solid on toilet training - except at night - but she actually doesn't care for the underwear yet, and I have to admit that sometimes we're just overly cautious. If she does have a mistake it's usually because she told us (by signing) and we missed it, so that isn't really her fault. It is a bit of a drag that at nearly 7 we're still dealing with diapers, but I think that if she could get up and go to the bathroom herself that we'd have been done with them long ago. She actually really loves being on the potty and frankly would probably spent half her day there if we let her (she really likes to flush and zip her pants up)

We do think she is getting more stable on her feet. She likes to walk holding just one hand, but tends to loose her balance. I can't say that we feel like we're anywhere closer to independent walking, but she has a much greater awareness of her body in space. She likes to climb up onto chairs and on to the couch. She has more control when trying things like sitting down on the floor. At my parents house for Christmas she did a fantastic job of coming down the stairs - which is very hard for her and takes a lot of focus.

SO all-in-all, it's been a great year for Noa! Perhaps one of the most exciting things is that she really keeps learning new skills and making steady progress and though there are likely many challenges ahead in the new year, we feel like Noa is up for new challenges and that makes all the difference in the world. We can only hope that our tired, older-parents bodies can keep up with the demands!

Holiday Update

It seems appropriate for this holiday posting to include a photo of Noa hanging with family (in this case with me, Cousin Electra and Uncle Jamie) - but this is actually a photo from Thanksgiving - which should give you an idea of how far behind I am!

Over the holidays I got a lot of questions about our bus situation and I'm very pleased to report that we have a new bus driver - the whole thing took about a week to resolve (props to Daddy Ben who took carried a lot of that weight - literally and figuratively - since I was in the midst of finals at school).

The Office of People Transportations (my fav name for a department ever) assigned an inspector to our case and after some research - including and interview with us - the matter was resolved in what might be called a holiday miracle considering what we were up against. We'd been told it was nearly impossible to get a driver off a route. Noa's new driver is a very lovely woman who tells me to have a "blessed day" every time I see her. Her new matron is also lovely and clearly cares a lot for Noa. The two of them certainly make us feel better and Noa has not had a single incident of screaming since then which is very reassuring for us.  Dealing with a totally non-verbal child, you spend a lot of your time having to trust you gut. In this case we knew we didn't like this driver - and Noa's behavior seemed to indicate that she felt the same, but until we actually made the switch there was just no way to know if it was him or some issue that she was having with buses in general or school, or what. So that is a huge relief!

Noa had a great Christmas. We went down to "Grammy and Grampy's" in DC. Noa was great for the ride there and back - didn't even need her zuzzies (electric toothbrushes) once! We were happily suprised. Also didn't need them to sleep there (apparently she just accepted that they lived at home - we actually had them with us we just never offered and she never asked - though she did ask for them as soon as we got home).

I will update more on other events... I hope before the end of the year! Noa is off of school this week so Ben and I are trying to juggle things around so that Noa can have a great break, and we both can actually get work done. Wish us luck!

Just When You Thought it was Safe to get Back on the Bus...

Well, the wonder of Thanksgiving weekend was quickly followed by the vagaries of the NYC School system. We woke up Monday morning to a new bus driver. Why? Some union rule in which drivers are given the opportunity to pick their routes twice a year to get routes they want. I'm all for unions, but I have to admitt that I can make out how this could possibly be good for the kids, especially in the case of special needs kids.

In any case, Noa and the new driver immediately did not hit it off. She had huge screaming fits on the bus with him. We don't know why - maybe the new driver, maybe something else completely, the problem isn't so much the fits as it is what he is saying about them (she has had screaming fits before and we deal with them - trying to sort out what the problem is and addressing).

But on Tuesday (day two with Noa) he asked if we had drugs for her. When I said I didn't drug her, he suggested that we should. The next day he said he wanted to pick her up 20 minutes earlier (remember all we went through to get the shorter bus route???). He said he wasn't able to get to school on time. When we called the school they said she did get to school on time. Wednesday afternoon he told me he felt that we should go on the bus with Noa - or have someone go on the bus - because Noa is impossible and out of control (there is a matron on the bus, and only one other child). He also told me that Noa's screaming and shaking in her wheel chair broke the lift on the bus. Yeah, right, all 42 pounds of her.

Soooo all that to say that Noa has been home since Thursday while we battle with the powers that be and try to get a new driver. This guy obviously shouldn't be driving special needs kids. But it takes time and it's unclear if we'll succeed. Don't know what we'll do if we don't win this one - he probably already knows we put in a complaint (and so did the school) - plus they are also changing the matron so that will be another new person on the bus... ack!

BUT as you can see Noa is taking it all in stride. The photos are actually from her trip to the Children's Museum on Friday with Daddy. She seems to be enjoying the whole thing!

In the photo above you put letters in a dino's mouth and then he says the letters. In the photo below she is playing with tubes that blow air - what could be better???

As for Mommy and Daddy - well it's a bit more complicated to try to make this work but hey, that's just another day in the Land of Noa!

Wish us luck this week trying to sort it all out...