As usual, having some weird problem uploading video, so we'll just make it easy and start with some still photos.
Noa did great with her presents this year. New items have been a challenge for her in the past - so present opening can be a lot pushing things a way and signing "finished." This is actually a common issue for CVI kids - they tend to prefer known objects to "novel" ones.
Last year Noa took to two or three of her gifts and we called it a great success. This year, she took to nearly every new gift and even participated in some unwrapping (though I'm not sure she entirely got the concept that the gift was under the wrapping, she seemed to enjoy the sound and feel of ripping bits of paper off and handing them to me).
In the photo above she is trying on a new scarf that she really loves playing with. The big-eyed pink fish by feet vibrates (and works in the water!) - loves that too. In so many ways Noa did extremely well and was very patient - sitting and playing while others opened their gifts. She loves being around everybody - all the chatter and chaos and excitement.
She also did a terrific job walking up and down the stairs at Grammy & Grampy's - something Ben and I were a bit nervous about because frankly, I couldn't carry her up and down the stairs (I'm better, yes, but trying not to injure myself quite yet) and Ben couldn't have done it all weekend by himself either. But Noa really seemed to like doing the stairs (even going down which is a much bigger challenge).
While her communication has been improving steadily - and she is even trying to use her words (vocally) without signing) we really struggled with some frustrating communication issues. Noa has a handful of signs and vocalizations that clearly mean something to her... but nothing to us and she gets EXTREMELY frustrated when we don't understand.
The big one is some combination "Shaaw" and "ShEEE" - ususally accompanied by her petting my hand, or as she gets more frustrated poking me with her finger, and then maybe slapping something as hard as she can and screaming like someone set her fire. It stinks. And it's really difficult because she so clearly knows that she wants. We have tried a million ways to figure it out and just don't get it.
She will also sometimes slap the palm of her hand with two fingers really hard and say "shaw" or "shee" - almost like a piano teacher wrapping a sloppy student on the knuckles. And the other sign is twisting her finger back and forth either on her cheek or her forehead (its not "apple" - a few people have guessed that already). Yesterday she actually took my hand and put it in the right position - like was trying to teach it to me and that might help. I nearly burst into tears, poor thing! She is trying so hard. I'm sure we just seem as dumb as doorknobs to her!
The problem is that sometimes she'll pick up some sound or gesture at school or at home (something we don't even know we're doing), and will interpret it as a sign. For example, at school they have this great little mechanical puppy that barks and flips when you press a button. They sent it home once (which makes it something that she might ask for at home because she knows it was there once before) - and suddenly she was doing this strange new sign that looked like pushing a button and saying "ooke, ooke." Again, big frustration, no one could figure it out. Then she started doing it at school too. I talked to her teacher who wondered if it might be mechanical puppy - which made sense. The sign was pushing the button and "okee" was probably what everyone said when they gave it to her: "okay."
To test it, I suggested that we give the puppy a name (Spot) and teach her the sign for "s" to go with it. "Okee" wasn't going to be a good name for the toy, it was too confusing since it sounded like Okay. We tried it, and within one day - truthfully - the entire thing was turned around. I think she was just as relieved as we were!
As painful as this is, we are also experiencing a big surge in overall communication that has been successful and satisfying for Noa. AND just before Christmas we started working with a private communication specialist who comes to the house on the weekends. Hopefully she will help all of us to navigate some of these more difficult moments. It's so interesting to watch Noa with someone who is really communicates with sign proficiently. She just pays atttention in a whole different way.
Unfortunately, she started with the whole "shaw" routine just as we were sitting down to Christmas dinner, and so ended up playing in the toy room by herself. Again, difficult because everytime we tried to pull her chair away from the table she would scream and hold on to the table even tighter - she wanted to be there with everyone. But she couldn't pull herself together, and we couldn't figure it out. Luckily, it didn't take her too long to realize that she'd be better off playing with toys then screaming her head off at the table and after a while was entertaining herself happily.
So Christmas was successful, but also challenging in a lot of ways. While Noa had a great time being in the mix and really enjoyed her presents this year, it was also clear to me that as Noa gets older, there are new challenges as well. I've always tried to kind of fit Noa into what everyone is doing with the least possible intrusion - but I'm not sure that really served me well this time around. But that is perhaps a different subject and this posting is getting long enough!
I leave you with this lovely photo of Noa wrapped her new Christmas scarf. Hopefully I will get some video posted later - !
Okay, so another long, dull spell on the Blog. But life in the Land of Noa has been anything but dull! Noa has been just soaring in over the past month. As you can see in this photo, she just plain let go of Jes altogether. She needs to hold on to stuff to balance, but is become more and more comfortable holding letting go of us and hold onto her bike or the back of the couch or whatever.
