Reading to Daddy

I've been wanting to get video of this for a while now, so I was really glad to snag this quick video of Noa "reading" to Ben - even though it's just a short clip.

If you've been reading this blog for a while, you know that "Ferdinand the Bull" is Noa's favorite book. We read it every night... twice. The version we have has Braille (on clear plastic) glued onto each page and Noa sometimes likes to follow along - she knows that Braille is where the story is and is starting to be able to identify a few letters, so... as you'll see here she is starting to do what any kid does when she knows enough to be able to pick out a few letters, but not enough to read: she just makes it up!

For Noa every page reads: 1-2-3-4-5. Sometimes a page will just go to 3, sometimes up to 10, but she definitely seems to be doing this as if she is pretending to read. It's sooo cute and wonderfully developmentally appropriate.

Winner!

Check out this gorgeous photo, taken by the ever-talented Talya Arbisser (known to Noa as the "The Clicky Lady"). This is from Talya's trip to Idaho this summer and features Noa at one of her favorite spots in the world, Gold Fork Hot Springs.

But not only is this photo gorgeous... it's also prize winning, having been honored with first place at the 30th Visual Arts Alliance of Houston exhibition.



Here is what Catherine D. Anspon, Papercity Magazine Visual Arts Editor/Social Editor and Juror of the 30th juried member exhibition for the Visual Arts Alliance of Houston said upon announcing her selection:

"For the first-place, I selected a photograph that is both exquisite and enigmatic: an image of a young girl floating in a pool, a modern Ophelia who instead of drowning we hope awakes to consciousness and empowerment. It is also an enchanting image of innocence and the reverie of dreaming, and it's important to point out that the star here is a heroine."

Ladies and gentlemen introducing 'Floating' from my long term project 'Seeing With Hands: Noa' - Thank you all so very much for your kindness and support!  

Congratulations Talya! And thanks!!!

Drinking Problem

If you've been following life in the Land of Noa, you may recall that we've had problems getting her to drink... well anything! Even now, after somewhat recovering from the no-drink stance she took in Idaho, it's still a struggle to get liquid in her. Currently she will drink only Pediasure. AND only if it's really full. AND only if Mommy holds it for her (sometimes Yvette or Jes, but mainly Mommy). How does she know if it's full? She takes it from you and weighs it thoughtfully in her hand, and then returns it to you so you can present it to her. And really, just one or tow sips may empty her cup to an unsatisfactory level.

Of course to look at this video, it's hard to believe this is the girl who flies into a rage at the suggestions that she try "one sip, just one, just ONE." Yeah, in the bathtub she will drink so much water that we've had to stop giving her baths in the evening because she will then proceed to wet her bed 2 or 3 times during the night! I thought about getting her one of those pet dishes with running water, but really we don't want to start that. In the long run it really won't help. What we want is for to drink like a human!

Some of you may ask, why don't you just stop trying. She'll get thirsty. The problem with this common sense point of view is that it doesn't work in this case. First of all, because Noa only drink pureed food, she gets liquid in her diet. Not as much as she should have; but it's enough to live on and enough that she doesn't get thirsty. So for now, the bathtub is her giant glass of water.

And We're Walking...

Hard to believe that summer is over and Noa is already back in school. Wow, that went fast!

Noa's had a great summer. As you can see, she continues to make progress with walking. Notice how she is really just holding on to one of Ben's pockets! It's a great strategy - and saves Mommy and Daddy from having their arms ripped out of their sockets though unless she has one of us on either she tends to do go off course and crash into us (which, to be honest, I think she rather enjoys). 

One of the things I really love about this video is the woman with the walker who just zooms right past us! Really gives you an idea of how slow a go it is when we're out walking together. It's great fun and it's really nice to be able to take a walk that exhausts Noa more than it exhausts us, but we're certainly not walking with her to the store to do some grocery shopping - we just don't have that kind of time!

The other great thing in this video: if you turn up the volume you can hear that the woman, as she passes, says something about how great Noa is doing and I say thank you - and then Noa, having heard this, also says thank you. And then she signs thank you, thank you. It's pretty cute.

Last week we walked like this with Noa to St. Vartan's Park which is 5 blocks away (a long haul!!!) and the bagel place is on the way back. It wasn't too crowded so we decided to see if she could stay sane while Ben got our bagels. Noa and I stood near the door where they have a few bar stools. Noa was kind of fidgety, but then her hand found a barstool and she began spinning it.  I asked her if she wanted to sit on it and she said yes (she's getting very good at actually saying the word yes), so I picked her up and put her on the stool and she figured out how to spin herself around. She ended up having a great time. Sure, she didn't stand still or stand in line, but she found something to entertain herself which was a huge step forward for her.

Other fun - we took a quick hop up to Boston for a couple of days. I'll post more about that later. All in all, I think Noa really enjoyed her short break between summer school and the start of Fall but when I told her she was going back to school, I have to say she was very happy - and has been happy to be back at school. And so we're all off and running. Hopefully the more regular schedule that comes with the Fall will offer me the opportunity to catch up with posting here!

ACCESS!!!! And a Cough-versation...

Okay, what's wrong with this picture? Can you guess? In order to use this handicap swing you have to go down the STAIRS! And no, there is not another way down. Lucky for us, Noa likes doing stairs and she can stand on her own, but for a lot of disabled kids this would be a big problem. Oh, sigh. Really, people? No one noticed this when they were installing it???

ANYWAY - as annoying as the swing's location is, this playground is very close to our house but I've never really used it before. It's actually a bit of a maze to figure out with a wheelchair (or giant disabled kid bike, which is what we had with us), so I just never really took it on but it's lovely and was almost empty - unlike the playground at St. Varten's which is often packed with pushy kids that no one seems to be attending to.

As Noa and I were going from place to place in the toddler area at the top of the stairs, there was a lone kid - about 3 - who kept running up to us and jumping in front of us. I'd wave to him and then he'd run off for a bit and come back again. I tried to get Noa to say hi, but usually by the time she'd respond he would be off and running again. Kids do this a lot to Noa because they are fascinated by the fact that she doesn't respond to them. It just seems weird. Which I guess it is.

As I was putting Noa back on her bike he ran up to us again, and when Noa - again - didn't respond he stood there starring at her for a bit thinking and then... he fake sneezed. "Oh," I said, "that was quite a sneeze." So he did it again.

"Bless you," I said.

Noa smiled and echoed "Bless choo." And then she fake sneezed.

And the kid fake coughed. Noa listened. The kid did it again.

Then Noa fake coughed. And I realized --- this is a big. I get why her teachers don't want to encourage her doing this all the time (especially the belching) but THIS is one of the first verbal exchanges that Noa has had with another kid, much less a kid she doesn't even know. This is a give and take conversation! Noa is creating a relationship to this kid that I don't have to facilitate. To shut that down just because it's not a socially accepted conversation seems to be risking cutting off the impulse to have an independent conversation so.... I guess I'm going to have to have a conversation with Noa's teachers come fall about how to deal with the fake coughing and sneezing and belching because it seems to me that just trying to make it stop is totally, 100% wrong.

I LOVE NY

 

Noa's last day of summer school was Friday, but I'm only just now getting to post these photos of her sporting her super cool 2000 World Series - Subways Series T-shirt which she wore in honor of "I Love New York Day." 

They've been having a new theme every Friday. It's a cute idea, but I have to admit that more often then not it ends up getting on my nerves - they just stuff a crumpled paper into her bag (hopefully on Monday, but sometimes as late as Wednesday) say something like "Friday is Black and White Day!" or "Animal Prints" or "Represent Another Country!" (during the Olympics). The one that really got me "Dress Like a Pirate!" The others I can understand as being part of what they're learning in school, but Pirates? What where they learning about? Theft? Kidnapping? Maritime Law? Plus it's a HOSPITAL school full of kids that are either recovering from surgery or have sensory issues or disabilities so... peg-legs, eye patches, parrots. Really?

But really I struggle with things like pirate day because at some level it's just work for me. I think for other kids it can be more fun to create these outfits, but Noa's just not there at this point. I do my best because she does really love it when people admire what she is wearing and tell her she is beautiful (who doesn't). In fact, she loves getting her haircut now because she gets a lot of compliments on it after. So long story... still kind of long (sorry) when I Love New York Day was announced as the final Friday I couldn't figure out what to do. I'd thought about just getting a cheap "I Heart NY" T shirt, but with my folks in town it just got away from me. The only things I had were T-shirts we'd been giving free by NY Hospital Medical Center Kids Unit and the Jewish Guild for the Blind/NY - neither of which were terribly compelling. 

Just as I was about to get a sharpie out and start scrawling on a shirt (Friday morning 1/2 hour before the bus) I remembered that I had a T-shirt - never worn - from when Ben and I went to the 2000 World Series. It was too small on me, so it was just sitting in a box waiting for Noa to get bigger. SO in a heart-beat Noa went from having the lamest NY t-shirt at school to having the COOLEST t-shirt dress ever!!! I was so excited about it that I think Noa got excited too - because she seemed very happy to show it off for these photos. Perhaps now the most compelling story about Noa, but it was a great day for Mommy. And a great day for Daddy too - because he'd forgotten that we'd gone to a World Series game - wow, what parenthood can do to the brain, that was a lifetime ago!

Chillin' with Family

 

August brought visits from Uncle Jamie and his crew AND grammy and grampy - and as luck would have it they overlapped just long enough for us to share a meal in the garden on one of the very few non-muggy days we've had in NYC since our return. The garden is one of our favorite things about our building in NYC. Not only does it make you feel very landed gentry-like, it's also a great place to take Noa walking without having to mess with the hectic pace of Manhattan sidewalks or 2nd Avenue traffic. 

Noa really enjoys having family around. Even when she isn't directly interacting with folks, she likes the excitement and chatter and energy of social gatherings in general but when she's with family she really seems to get that it's a special. And she love sharing her latest, greatest trick which is super-sonic belching. I swear, you'd think she was hanging out with sailors and 12-year-old boys!  

Noa's impressive breath control and manipulation of air channels seems to be somewhat lost on her teachers and therapists who made a point of letting me know that they are ignoring her belches... and her fake sneezes. The problem is Noa learned on vacation that people respond to these things. It's hard to tell friendly strangers who say "bless you" to stop giving her blessings! And frankly, you can't really stop other kids from enjoying a good belch. 

Plus I've got to admit there is a sort of genius what Noa is doing. If we're in the elevator or walking in the garden and Noa thinks there is someone around but she can't tell, she can usually find out by belching or sneezing and waiting for someone to respond. Sure it's not the most lady-like way to get someone's attention, but from Noa's perspective it certainly makes for a lot of laughter and what could be bad about that? Good question, Noa. Good question.