Here is one of the highlights from this weekend: the Family Fair in Madison Square Park! Usually we go to these things for the atmosphere. We know that about 90% the kid activities will be physically inaccessible to Noa, or so visual that they will be meaningless (or like pouring colorful sand into bottles, just trouble waiting to happen because the only thing sand is good for is throwing). SO imagine my suprise and delight when we found this table (run by the Rubin Museum, one of my favs even before this weekend). The idea was just to draw and put stickers on CD's (then put a string on them and they can be light catchers). Now I will say that part of Noa's ability to do this comes from her ability to stand at the table and work (I'm behind her serving as her spotter which explains the angle of the photo). Noa did a great job of putting on stickers - mostly she colored the table, but hey, she wasn't the only kid doing that! The biggest hurdle was getting back the stroller police who initially wanted me to park Noa's giant all-terrian vehicle kinda far away (in all fairness it looks like an enormous stroller) but when I explained the situation they let us pass. I know it's hard for them because then other people want to bring in their strollers - we have a placard on the stroller for disabled child which helps some.
After we did our arts and crafts stuff we went over to where their was music and Noa and I danced - which was great fun - Noa loves live music. We hung out daning until Ben could join us and then tooled around some more and even found a booth for a movie that was giving away free cardboard fans! The woman told us to take as many as we wanted. Apparently the other kids weren't as interested in hand fans. Their loss!
What a beautiful weekend it was in NYC! And as you can see, Noa is loving the spring weather! As you can see in this video, Noa is lovin' walking like a big girl. You may also be able to see she sometimes swings her legs forward and uses that momentum to propel her. Her PT at school, Jenny, taught a way to walk with her that reminds her to use her core a bit more specifically and engage her whole lower body (but it's hard for Ben to do because he's so tall) - we balance using both ways and she does seems to like this way the best.
When she gets to the chair you'll see she does a strange sign for chair. She seems to associate the word for chair with her wheelchair - so now she thinks that is the sign for all chairs. You'll also see that since it's a chair she is unfamiliar with she is a bit confused about how to get up on it and tries at first to climb it from the front as she would getting on the couch. But once Ben shows her the other arm of the chair she totally gets it.
We've done a few picnics since the weather turned nice and it's been great. Noa seems to get that we're not at the table at home so we don't have her army of books and toys - and she sits patiently without demanding too much (she demands doing the alphabet every so often, but we can do that for her). Of course, being outdoors offers a lot of great distraction: wind, sound of leaves, ambulances (it's NYC after all), other people walking by - and ofcourse smells, etc... there is a lot to pay attention to.
This is actually a video from last week, but I didn't get a chance to post it until now - after working with shapes, we went on to work with color blocks and sorting them into baskets that are the "same" color. In this video, I'm mostly refering the colors by name. I'd actually intended to use another video here - this one is a bit later in the process when I was using the color names more. The goal is for her to understand how the basket and the block are the same (i.e., the colors are the same). But you may be able to see in this video, Noa is mostly interested in shaking the blocks out of the basket, so getting her interested in even worrying about matching colors is the challenge!
Okay, so I've been a bit MIA here on the Land of Noa - I've been taking video, just not getting around to posting them so this is the first in a series of posts (4 in all I think) - and this, I think is the most amazing one.
We've tried to get back into the CVI therapy at home, but Noa really had lost interest in the blocks (she just likes to throw them) - and she really wasn't interested in trying to match things of the same color (which was the next task that had been laid out before us). The concept of color just wasn't working for her. She actually knows the signs for red and blue... but they're just signs so far. So we'd kind of reached an impasse in terms of her willingness to play along. THEN I had an idea...
Noa loves shapes. What if - instead of asking her to find blocks, we were asking her to find shapes? We had some shapes from a puzzle (that she never really liked) so I put them on the table and asked her to find the shapes and.... well, check it out!
There are some times where maybe she felt the blocks, but there are also clearly times where she puts her hand right on them when I ask her to. I have some other videos of this - but this was the best video even though there are some times where maybe she was feeling them. And that's kind of how CVI therapy is anyway. It's not all perfect all the time.
We did this for a while and I try to use the color words for the blocks sometimes, so that we're can start working on that concept - but sometimes it only confuses her. (I know what a square is, but I don't know what a blue-square is.)
The cool thing is that I was able to follow this with working with the blocks for a bit. We worked on putting blue blocks in a blue bin and red blocks in a red bin - focusing on the idea that the colors were the same. She had some success with this and practiced holding the blocks up to her face so "see" them. I think that kind of worked. I got some video of that which will probably be my next post.
Those of you who have been following this blog know that Noa loves The Story of Ferdinand. We read it twice before bed every night! There are some words that she'll do the signs for (happy, big, home) and she also signs the phrase "I like it better here where I can sit" (I'll have to get that on tape). BUT the fun thing here is that she can fingerspell Ferdinand all by herself - and hey, how many kids learn to spell Ferdinand before they learn to spell cat or hat?
This video is taken just before our 2nd read of the night so we also caught her signing for me to "read book again" - the signing is a bit compromised by the stuff monkey in her hands, but I think you get the idea....
This is actually from earlier today - we took Noa on a walk around the neighborhood (with her actually walking the whole way). The goal was actually a spring fair that was happening at the public school near us - on 32nd between 2nd and 3rd Aves). When we got there we discovered it was sponsored by a group that was raising money for kids with Cancer and Special Needs. Now I'll say up front we didn't expect to find anything at the this fair of interest to Noa - we very rarely do - but walking around in the midst of people in a happy spirit is nice and makes her feel a part of something. But I have to say that considering the purpose of this particular fair, it was disappointing that they had NOTHING for kids with disabilities, and they were charging $5 a pop just to go in and walk around. Honestly, how hard is it to include kids who can't run and jump? Is there something for a kid for whom face painting has no meaning? It's not that hard. A box of sand would work! Okay - anyway -
We decided instead to just keep walking. Noa was really digging the walking, so we continued to 3rd Ave and just decided to walk around the block and back to the swings at our own building. At some point (because Noa really pulls on Mommy's shoulders when we walk this way) we tried having her put one hand in each of our pockets - and she did it. She walked like this for a block and did great!
The video above is actually from after we went on the swing and we tried it again walking back to the building. I did the best I could filming it while walking with her - but if you look closely you can see her hand is in Ben's pocket.
We were so happy to get a visit last week from Noa's BFF Melissa and her cutie-pie new baby Lilia! Since Melissa was around throughout her preganacy, Noa and Lilia actually really already knew each other. Before she was born, Lilia was responding to the songs that Noa would play for her on the piano. So really it's like meeting someone you've been emailing with for a long time. Jess (Noa's other great BFF was also on hand - and she helped Noa show off for Melissa and Lila as you can see in the photo above.
Noa hadn't had a visit from Melissa... well... since February when Lilia was born, so she was thrilled and she really seemed to be interested in Lilia. I don't think she's ever met a person that small before...
And it seemed like she also understood that there was now someone smaller than her, and that Melissa was going to have to pay attention to the small person. Toward the end of Melissa's visit she really did get sort of sad and clingy with Jess - I think she really got it. Here Melissa is signing "I Love You" and Noa signed it back. It's tough not being the smallest any more!
