Noa and her Burros

A fantastic weekend in New York, and we were all enjoying the great weather! Despite these photos of Noa enjoying a few rides on her burros - she did a ton of walking. In these photos we are on the way back from St. Vartan's Park which is a few blocks away and she walked all the way over and most of the way back. Noa is also sporting a lovely up-do and wearing a shirt that she wore as part of the school fashion show a couple of weeks ago - she picked it out herself that morning - this girl knows how to do Sunday in the City!

Chillin' in the Garden

Very excited to be sharing this video of Noa in the Garden yesterday with her new BFF Yvette. Yvette is a recent member of Team Noa, she is hard of hearing and is ASL fluent - she also works as a teaching assistant at a School for the Deaf. As you can see from this video, Noa really gets that Yvette is someone who communicates with hands - and you can see how she is really focused on listening to Yvette in a different way. It's really terrific to watch them together. Of course, the only problem now is that Noa is learning signs faster than we are!

In the midst of all this great weekend stuff, I'm going to go ahead and address a couple of struggles. I realized last week that the videos and all are so positive and it's easy (and fun) to focus on all this great stuff. But I think it's important to remember the difficulties as well, if nothing else they are a testament to Noa's determination and good nature: in spite of all we are struggling with in some areas, Noa continues to be a happy thriving kid.

But at home, potty time continues to be a huge struggle. Noa seems to be obsessed with "wiping" - and always wants more wiping and will cry, head-butt and monkey wrestle with you to keep you from pulling up her pants until she's ready... which seems to be never. We have literally spent 20-30 minutes trying to sort through it all (she'll do a ton of signs and whine and complain - but we can't understand any of it.) Sometimes we can bribe her with a toy or activity that she wants - but often it just goes on and on. She'll even sometimes just insist on getting back on the potty. It's a huge and frustrating mystery - often when we do get her pants up she is very unhappy, but after a couple of minutes she seems to be over it - emotionally anyway - she may still sign "wipe wipe" for a bit. A couple of times we've thought we had it solved, but then it returns. We've called school and they don't seem to be having any problem there... and with me going to Idaho in a couple of weeks, it's difficult to think about leaving Ben to deal with his on his own for a couple of weeks. It really is extremely draining and frustrating to deal with. So that's sort of the major struggle at home now.

Of course, I have to end with some good news - Noa had a dentist apt this week with a new dentist. Our former (expensive) dentist, dealt specifically with special needs kids, but this was a more regular dentist and so we told him we'd serve as assistants to hold Noa down (I have a kind of a jujitsu hold for Dr. visits, but still need Ben to keep Noa from using her giant, hard head to clock me in the chin). Noa did great! She did scream... but not right away, and while she did try to clock me in the head a few times, she wasn't trying to get her arms free and squirming her head around so the dentist couldn't get - she just tried the clocking mommy moves when he took his hand out of her mouth. We were very proud (and thanks to Ben for being a better holder than the assistant at the other dentist who didn't quite believe that Noa would try to clock me... until after she already did).

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!

Going on a Picnic!

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.

Sorting by Color

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!

How'd You Like Me Now?

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.

F-E-R-D-I-N-A-N-D

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....