That's Noa!

Okay, so this video really doesn't have anything to do with the story that inspired this posting, but I'm glad that I remembered I had it because it's a lovely clip of what was a real treat for Noa: Daddy at Music Therapy. As you can see in this video, Noa is doing a great job of playing along with this song - she really likes this one!

But the big news this week is that Noa actually ate some toddler mac and cheese this week (thanks Claire!). Of course it was covered in babyfood Chicken flavor (her favorite) which helped. There was a lot of screaming the first time - but she managed. And then today, I tried (I tried to break the pasta in half so the pieces were probably about the size of a pea) - and through there were some funny faces, there was no screaming, and no gagging. And she really seemed to be proud and happy when I told her what a big girl she was. She didn't chew the pasta, but it was very soft - a few times she seemed to move it around in her mouth. But just to allow it in... huge!

It's difficult to explain what a huge deal this is! Noa will be five in just a few weeks and this is really the first time we've seen her take on anything what wasn't pureed.

Alot of visually impaired kids don't eat solid food - sometimes the reasons are clear, sometimes they are not. And many of those kids will NEVER get past pureed food. There are also many VI kids who end up on feeding tubes because they are so adverse to solid food - or because they can't get enough nutrition from what they are willing to eat.

When Noa was younger, we were told the tube was an option because for a while we weren't sure she was getting what she needed - she was soooo adverse to eating. But kids who go on feeding tubes, often don't get off them because... hey, would you? If you don't like eating and you can get all your nutrition from a tube? So we battled through that one and as much as we suffered over the fact that she wouldn't eat solid food no matter what we tried (and we tried everything!) we were always grateful that we never had to do the feeding tube.

SO considering all this - getting some pea-sized soft toddler pasta in the mouth and down the throat without gagging, screaming, barfing (which trust you me, we've seen a lot of over the years) is truly miraculous.

Circus Circus!

Noa had her first trip to the circus last week: The Big Apple Circus at Lincoln Center. We went with her school - the circus does a special needs kids performance and Lincoln Center is just about 2 blocks from school so it was about the easiest field trip in the world.

It was hard to get a photo of Noa in which you could really get a sense of the Circus - we brought her in her wheelchair so just were just parked behind the regular seating. But it was quite a crowd and kids of all ages with all kinds of disabilities.

At first I was bummed because I didn't want her stuck in that seat unable to really play with me, or bounce in the bouncey circus seats - and the wheelchair tends to tilt her back. But actually turned out really well. As soon as the lights went down I just stood Noa up in front of me - cause there was live music and I thought she might want to dance... and dance she did!!! Through almost the entire circus! Thank goodness Noa's one-to-one Emma was with us to switch off with me because my shoulders are still not in the best shape.

Unfortunately Noa wanted to face me most of the time. The first time I tried to turn her around she kind of paniked and grabbed onto me. I think she was afraid I was going to give her to someone else or make her do something she didn't want to do (like get a shot). But towards the end, when she was tired, and convinced that this was a fun trip, she turned around... and then she discovered the metal railing that really moved if you shook it. When Emma and secured the railing so, she went on to pulling the velcro'd signs off the railing. Yeah, sure, it's not the best kid behavior. But it sure it NORMAL toddler behavior and so to perfectly honest I was quite proud of her for making normal kid trouble.

Toward the very end, she sat on my lap. In the final big number she seemed to be looking around and taking in the lights a bit... so we just got about 7 or 8 minutes of using her vision but I think for her that was plenty. When it was over, she took it very well. She learned the signs for "fun" and "circus." It was an all out great adventure!

Bringing it in with STYLE!

Okay, last one today, I promise.
I just couldn't resist.
I don't even have anything to say about this one...

Happy New Year

Just thought I'd post our 2009 Holiday Greeting on the ol' Blogisphere. The photo taken by the ever fabulous Talya Arbisser (otherwise known to Noa as that nice lady who makes the clicking noises). She was in town just before Thanksgiving and took this photo of Noa enjoying the Ball Pit - her reward at the end of PT session.

The print is kind of small:
"There are two ways to live your life,
One is as though nothing is a miracle.
The other is as though everything is a miracle."
- Albert Einstein

Of course one of the truly joyous things about Noa is that she really does live her life as if everything is a wonderful miracle, and hey at the end of a long day of school and PT... a moment of giggly solitude embraced by colorful plastic balls? Yeah....

Holiday Fun!

Just wanted to share a couple of photos my Mom jus emailed me of Noa enjoying family time over the holidays. In the top photo, from Christmas, Noa plays her favorite Hand Game with Grampy at the kitchen table.

In the lower photo, from Thanksgiving, Noa chills in the playroom at my folks house with her cousins Abby and Aidan. It can be difficult for Noa and her cousins to figure out how to play for long stretches of time, but they don all seem to enjoy each other, and Noa is definitely aware of who they are. In fact over Christmas Abby created a sign for her name and taught it to Noa and she picked it up right away. It's funny, Noa looks A LOT like Abby did at her age, and even in this photo you can see that they have very much the look on their faces - it's hard to believe that they aren't blood-related, the likeness is pretty uncanny at times.

Good Toy!

This is a great toy we got from a woman who lives down the hall from us: you draw on this special cloth with a water pen. It just writes in blue, which is perfect for Noa. Blue is the color that most motivates her. I did start the doodling, but she did most of that blue blob herself. It's hard to tell what she is enjoying the most: the feel of the pen or the color, but she did seem to get that she had to hold it that way to make it "work" - and she signs that it is a "good" toy. Yes, for those of you who actually know ASL, her sign for good is a bit modified. She seems to do this to make it different from the sign for "thank you." The interesting problem is that a lot of ASL has to do with the facial expression and the context of the word... things that are kind of lost of Noa, but her solution: to find her own way to make them different, seems to work right now with her limited vocabulary. Again, this is a totally new toy! In the past, she would have just handed that pen back to me and signed "finished." So this is really a whole different world of behavior for Noa.

NEW Toys!

A lot of people ask how Noa learns signs, well here is a perfect example.

First we have a highly motivating situation: Christmas! Actually this is the first year that Christmas has been such a great motivation. Her resistance to anything new made new toys... a bit overwhelming and not always a great event. But this year, she loved all her new toys and played with most of them right away. She actually also ripped some gift wrap and stuck her hands in her Christmas stocking - both very new activities for her.

This is actually her first Christmas morning gift - some great block from Grammy and Grampy that I think really got her in the right mind-set for the rest of the gifts. I took the opportunity of her realizing that this was a "different" toy, to teach her the sign for "new" - a sign that we'd get to use a lot since there would be a lot of new toys.

As you may notice, she actually says the word "new" when I ask her if she wants to learn the sign. She does a lot of this repeating, but when she wants to express herself she tends to use signs.

As you can see, she really gets that I'm teaching her a sign that she wants to learn. She just keeps putting her hands out for me to repeat the sign again and again. A few days after Christmas, and the sign is pretty well set in so much as she can make the sign if I ask her to. Sometimes her understanding of the concept comes later as she tries using the sign - though she seems to be doing pretty good with this one so far.

She did a lot of verbalizing on our Christmas trip to Grammy and Grampy's - she was trying to say "Christmas" a lot. For the first time I think she really got that it was a big fun event full of toys, and she did great with all the holiday hub-bub of noisy kids and their toys.

She also started doing the sign for "no" - which has been a tricky one. We've been doing it as a sort of song and she likes doing it that way. The trick will be transferring it to situations in which she wants to say "no" since she is usually upset and so doesn't always remember her best communication skills (a problem I think we can all relate to).