Rover is My Co-Pilot

After our great success with Rover yesterday, I just thought I'd give him a spin this morning and see if she was still attached. She did sleep with him, but when she woke up she asked for "Doggie" (a different smaller toy that she usually sleeps with).

So after breakfast I asked her if she wanted Rover and she signed some approximation of his name (it's a difficult new sign for her but she was close) and when I gave her Rover so was so excited - it was even better than block!

I swear to you, I did not put Rover on her back like that. SHE did it! She asked for piano and brought him with her and after some work flipping him about she finally discovered this solution on her her. Smarty!

Red Rover Red Rover send Noa Over!

As I think I've mentioned, it can Noa a while to warm up to a new toy, and when I say warm I mean red hot! This doggie was a birthday gift from Grammy and Grampy back in February and yesterday was his lucky day!

What is really interesting is that she seems to get that he's kind of like a dolly. In fact, that is was the sign she used for him at first. I decided we should give him his own name and used the opportunity to pick an "R" name because its a letter she doesn't know yet and would be totally difference from her names for any other toys.

As you can see, once she got her hands on him we went everywhere - even potty time.

Memories....

Before we embark on a new school year at a new school, I thought I'd share some of these great photos, provided by Luz at the Jewish Guild, of Noa having fun at school.

Today we took Noa up to her new school Blythedale to do a bunch of her intake stuff. She did great and everyone at the school was impressed with out she'd grown (both physically and in terms of maturity and comfort-level) since the last time they'd seen her in the spring. I was impressed that

she took me that she had to use the potty and then even managed to use the giant grown-up potty without her kiddie seat! And she was really very patient with them checking out her legs and her eyes and all that doctory stuff. Gosh she made us all look good!

Then we took her to one of her favorite places: Wal-Mart. Yes, Wal-Mart. Well, basically she likes anyplace with shopping carts. We're looking forward to school starting on the 7th!

Noa Explores the Deep Blue

Okay, finally some swim-time action!

Here Noa demonstrates how eager she is to swim on her own.

Actually, one new thing she really enjoyed this weekend was swimming back and forth between Ben and myself. We'd give her a good launch and then she'd paddle a bit and get very excited to find us. It was very cute and she really got that she was going from one to the other (something she really doesn't get the same way if she is walking - though maybe this will help). Here I think she is trying to tell Ben that she wants to play this back and forth game. She probably is launching off of him thinking she'll find me.

She was very independent in the water this weekend and because the water was warm we could be in the pool for long stretches. We were in for over an hour and a half on Saturday afternoon (after having already done an hour in the morning). We'd usually start in one of the cooler pools, like this one - a shallow pool that she can actually stand in plus it has the cool waterfall, and then when she started to get chilly we'd move to the heated pool. She was often so tried by the time we got out that she'd be jumping up and down in the water with her eyes closed (probably some combination of chlorine and exhaustion). Once or twice we even suspected she was dozing off mid-jump, then she'd shake it off and get back to work.

The only downside was that by the time we'd get her out of he pool, showered, changed and ready to have a snack she was usually pretty much out of patience and a bit screamy. Still she put up with it all very well.

Noa Wobbles But Gets Back Up!

Murphy's Law being what it is the wireless didn't work at the hotel for the rest of our visit, but now that we're home I'll try to bring this up-to-date in bits and pieces because there is just a lot to tell. It was a great weekend! Noa did great work and had great fun, and so did we grown-up types.

This video shows Noa falling, yes, but doing it so well! I guess it's also the first video I've posted with the canes in action. We're actually on the lawn outside our hotel room which wasn't the easiest surface to navigate but it forced Noa to really pick up the canes and her feet (she tends to be a dragger - in fact she wears out the toes of her shoes first).

Note how she tries to regain her balance (rather than just falling like a plank), and although Ben helps to slow her fall somewhat, she manages to get her weight more center and put down her knee, thereby staying upright (rather than just shutting her eyes and waiting for the impact).

The other wonderful thing - which really says a lot about Noa - as soon as she has a hand free she signs that she wants to stand-up again. Totally undaunted, and in fact very happy with herself.

I have to run for now but there will be more later today - for reals!

Vacation!

So here we are, dinner, our first night at Mineral Springs Resort and Spa. Well, appetizers really. Noa was so exhausted that we just did the app's there and took the rest back to the room to avoid a rather public meltdown.

I didn't get a photo of us in the incredible (and seemingly Noa-designed) landscape of indoor and outdoor pools, but I'm sure we'll be there tomorrow and I'll get plenty of photos then. It was really a Noa dream-scape. Indoor pools with waterfalls, a heated outdoor pool (for mommy), some hot tubs and jacuzzis around the edges, a playground of giant sprinklers and pools we haven't even seen yet! Noa was so happy - and exhausted - I think she was falling asleep in the pool even as she was signing "more more more." One lady looked at her a bit concerned and said, "she looks dazed."

"Oh, she's just pool drunk," I assured her. She didn't seem terribly assured.

One fun, interesting fact: when we got here I got Noa out of her wheel chair and we walked around the room touching everything - the bed, the coffee table, the couch. Noa got very happy, I think she got that we were on a vacation and she did a whole jumping/happy yelling/dance about it. She was really really happy. I think she new it was going to be fun.

I'm sure there will be more to report tomorrow. Swim, eat and go to sleep was about the sum of it today.

One Giant Step...

Check out Noa with her new Quad Canes!

She has been working with these at Rusk for a while now, and she finally got her own nifty red pair for at home thanks to a be-lated Christmas gift from Grampy and Grammy. We tried to get them through insurance but she got turned out (and as we also learned, they usually only approve one if they approve any... which in Noa's case would be totally absurd)

As you can see she really has taken to them.

Of course, they are huge in terms of our efforts to get Noa walking on her own, but they have done a lot to improve her balance. She used to just fall like a plank, but now she can use the canes to try to find her balance on her own.

Me and Dolly

Here is Noa with her new best friend, we think her name is Ari (which I think is her way of saying Dolly). Noa has had this doll for a while but didn't show much interest. A few weeks ago I starting using the doll to sing a song with Noa where we count fingers and ears and eyes. Recently she started to understand that she could do the song with us - touching our fingers, ears, etc... so I thought that might help her understand what the doll was meant to be.

Se liked doing the song with the doll, but would usually do it once with me and then push the doll away. Imagine my suprise this morning when I looked out from the kitchen and saw her sitting on the floor hugging the doll. The doll has been an almost constant companion all day. If I ask her to hug her, she hugs her. She totally seems to get it. Very cute.

Rock On Pre School Grad!

While Noa didn't care so much for all the talking in the graduation ceremony, but she totally dug the after party - rocking out and visiting everyone, walking, walking, walking and laughing when the big boys started popping balloons.

More Graduation Day Fun!

Well I haven't been able to post any of my video from today, but while I'm figuring that out here's a few more graduation day photos.

I do have a video (including the ear-busting sounds) of Noa doing her giant scream, but until I get that up, enjoy this (silent) photo of her screaming. The other two photos show the solution to screaming, Noa's terrific sign language teacher Maddie. She came up to Noa when their was a break in the action and as you can see, Noa is really paying attention. She calmed right down, and since Maddie also really gets Noa, she gave her a blue scarf so she could do her "Our Lady of Graduation Day" routine.

Class of 2010!

Check it out: Noa walked to her seat in her pre-school graduation today! Seriously, that in and of itself is remarkable and something that - on November 17, 2006, when Noa started at JGB - I never would have predicted. When we started at JGB Noa was 18 mos old and couldn't sit up by herself yet and I think she had two signs: finished and swing. PLUS she managed to wear that blue sash for the whole ceremony!

15 kids graduated in Noa's class, and as wonderful as the morning was everyone was pretty broken up by the fact that this would be the last graduation for the pre-school which is shuttering for good next week. Interestingly, ABC usually covers the graduation as a feel-good story but they weren't there this year. Can't help but be annoyed that they didn't show up when the kids really needed them to get the word out for them. They just liked it as a feel good story.

ANYWAY - I was very honored to be one of two parents to speak on behalf of the parents, though because it was all so emotional it was also difficult.

Noa made her presense know throughout by screaming her brains out whenever the clapping and/or singing stopped. But other than that she did great - they all did great! It was pretty remarkable that they could get any 15 toddlers to hold still that long!

Thanks to great uncle Vani for the dress Noa is wearing - he brought if for her from Hawaii a few months ago and it was the perfect graduation gown. After the ceremony there was food and jumping around and balloon popping and all vareity of great kid things.

The JGB has been a huge part of Noa's journey. We're really going to miss it and and all the people there so much. While I can be glad that Noa got through the program all the way until graduation, I can't help but think about the kids who now have to find other programs at

this late date.

Our Lady of the Big Girl Potty

Thanks to her own innate modesty, I am able to post this photo of Noa demonstrating her skills on the big girl potty.
As usual I have gone a long time between posts and so find myself posting a whole series of photos and videos on one day (5 today, which might be a record).
It's be very busy in the Land of Noa - but we finally seem to have cleared things with the Board of Ed in terms of Noa's placement for the fall, and have an IEP in place which on the advice of my lawyer (Ben) I will not talk about except to say that it is truly mind-boggling how much paper can be generated and how many people must be met to discuss one 5-year-old child. No wonder she thinks she's the center of the universe!
We've also been busy with the bus company that transports Noa to and from school every day. I'm sure Ben would also suggest that I not blog about that -- although I will say that we've had days where it seems to take them nearly two hours to get her from Central Park West and 65th to 30th and First Ave (the district does have rules about how long you can keep a kid on the bus: 1 hour and 15 minutes). So that's been another fun summer game.
And lastly, there is Medicaid. We're trying - once again to get Noa on straight Medicaid while similtaneously desputing charges with her current Medicaid HMO which - as you may recall - decided that Noa didn't need physical therapy because it clearly wasn't working (after 9 or 10 sessions she wasn't walking, so must be a lost cause). The way it works in NY is that once you're on Medicaid they want you to join one of their HMO's that manages your care. Straight Medicaid is for those who can't be served under those HMO's.
Couple of funny (not funny) things in this:
1 - We selected this particular HMO because it was the only one that covered the place where she gets PT. Even now, we couldn't use their rejection of her as a reason to be on straight Medicaid because on paper, they say they cover that program even though they actually have no allowance for people with a permanent disability... which is why we went on Medicaid in the first place.
2 - I discovered (quite by accident) that our HMO does have "case managers" for people with chronic or complicated medical conditions. I called and talked to one and she told me that they just give advice and her advice was to continue with our dispute - that we had to prove that the PT was "restorative" because there is no allowance for disability. I still have no idea what that woman's job really is - though she was nice enough and told me that she hears these stories all the times from parents of disabled kids.
ANYWAY - the other posts are much more fun than this run down of what we did with our summer vacation. Hope you're all enjoying yours!

Too Much Fun

Okay, here is one just for fun. The two dancing flowers in front are, yes, singing "I Got You Babe" by Sonny and Cher. A gift from a friend of the family a few years ago that Noa continues to enjoy - if you hit the flowers, they start singing again. The animal noises come from buttons on the book she playing with. As you will see, she also continues with the blanket theme. We have two Tinkerbell blankets and they are her clear favorites: the texture, the color, the size, it just seems to work for her.

This also includes one of her other favorite activities: books!

Now don't get too excited, she's not reading them (though many include brialle so she can get used to touching the words). She likes to create a breeze with the pages. But we sneak in feeling the letters here and there. We also have some blocks with brialle letters on them (thanks Amy Saltz) that she likes to throw - she'll feel the letters a few times, then throw the block. Again, we're just sneaking it in.

FUNNY STORY: so Melissa is on the elevator with Noa last week at school, and Noa is playing with her electric toothbrushes (which she loves). She finishes with them and hands them to Noa and says "Thank You." This Dad on the elevator turns to his kid and says "why can't you be nice like that?"

and a one-a and a two-a...

As I've mentioned before, Noa has started trying to copy sounds and words. Sometimes, if she is feeling confident she'll skip using the sign completely (though right now book and drink sound an awful lot alike which can be the cause of some serious heartbreak).

Here we have Noa counting with me to 10 - and then doing some great playing. The video includes a lot of her favorite stuff. Anyway, we've been using counting to 10 for transitions for a long time with Noa so she's been listing to these numbers for a long time. Counting is helpful for kids with all kinds of special needs but has been particularly helpful in our case because Noa can't see the cues that might let her know that something is about to finish (like mommy packing things up, or that we're getting close to the chair where she's going to sit). It gives her ome time to get herself prepared for what is coming next.

As you will hear, the numbers can get pretty creative. Numbers with hard sounds, like three, eight and ten tend to be easier than numbers like five and seven that include sounds that are softer or smoother. I think she just likes the way it feels to say two. But the interesting thing that we don't quite know is whether her difficulty with some sounds is a difficult in hearing the difference between the sounds, in making the sounds, or some of both. I suspect some of both, though more and more I think she has trouble telling the difference between sounds when she hears them and sometimes gets more from the tone and intention of a sentence than she does from a singular word.

Signs of the Time

Okay, its always a bit of a mess format-wise when I try to upload more than two photos in a single post, so we'll see how this works.

The point of all these photos being that Noa is signing up a storm and hungry for new words every day.

In this post we have blow kiss, proud, smart, dance and funny.