ABC's...? Yeah, Noa Does That!

It was actually less than a week ago that I posted what I thought was a pretty amazing video of Noa doing the ASL alphabet with Ben modeling all the letters for her... and now this: Noa does all the letters all by herself!!!!

Yeah, she needs alittle side coaching, but look at how deeply she thinks about when she knows she doesn't have the letter quite right. There's a lot going on in there...

I will say she has been pretty much obsessed with the alphabet - asking for it to be repeated over and over. In fact one night this week she was crying in bed and squirming around as if she were in actual physical pain - at my wits end I tried the alphabet and quickly realized that was what she wanted all along! In fact, at the end of the alphabet you'll see that she immediately wants to do it again.

She also likes to try to say a lot of the letters, which is really interesting - the signing really seems to inspire attempts at language that just don't happen any other way. It makes some kind of connection for her. I especially love the way she says "W" - listen for it, it's fun.

In other signing news, she is also doing great with signs for food - and using the sign for please a lot, which is lovely. Also finally getting her to sign "mommy" instead of just grabbing me.

On the challenging side of the coin, she has suddenly stopped drinking - over the weekend wouldn't have a sip of anything at all. It was a real puzzle. Finally yesterday I got her to take a few sips of a drink if I held the cup (AND I had to count so she knew I was serious about the drinking - and she wasn't exactly happy about it). We don't know what motivated this. Just so you know, since she still eats pureed foods she is getting liquid in her diet, so she's not in immediate danger of dehydrating - but it's been a LONG time since we've had a step backwards in the eating/drinking world and we don't want to lose ground there.

We've also seen more hitting, knee and elbow banging and lashing out when she is frustrated and can't communicate - this will happen sometimes either when she has a sign that we don't understand (either because she's mistaken some innocent gesture for a sign, or she's not quite doing the sign correctly so it takes a while for us to sort of dectective out what she wants, or she just doesn't know the sign for what she wants). This is hard to see, and when she is upset it can a challenge to just calm her down and try to patiently sort it out.

On the plus side of this coin - because she understands more, I've actually been able to start more effectively use the concept of a time with her to make it clear to her that hitting herself will not get her what she wants - which is usually me.

The othe plus side - she is mostly walking just holding one hand now! She does lose control of her legs... pretty often. It's actually kind of funny because she'll try to recover by walking faster (which starts to look a little like Monty Python's School of Funny Walks). It usually ends with her crashing into me, but I can see her focusing more on figuring out how to stay in control using her own balance and her legs - rather than pulling on my arms for stability. So that's a big switch.

All in all --- always something new, in the Land of Noa!
btw, thanks to my mom (Grammy) for taking this video. you'll see my dad (Grampy) making a cameo in the background!

ABC's with Noa and Daddy

Okay, so here it is! Noa doing the ASL alphabet with Ben. She doesn't make a big deal of "showing" the signs - in fact sometimes she does them into her own hand - so you really have to keep an eye on what she is doing. Also, check out how delicately and fully she feels Ben's hand to decipher the sign. It's actually kind of amazing how she puts all the that information together and makes the sign herself, especially because understanding body image (how your body looks at all) for blind kids can be really challenging. You'll see she gets the finger positions quite well, but the orientation of the whole hand isn't as clear to her (as in the letters P and Q). You'll also see her rocking her head back and forth. My best guess is that she is doing this to try to get some visual cues - CVI kids tend to move their heads to get some vision, partly because the most basic vision we have is really about movement (seeing something move... like a lion that wants to eat you for example). She she moves her head to create ultilize that. Also, most CVI kids have some vision on the side rather than the center, and she seems to notice things more on the sides so she could also be just trying to use that area of vision, though I actually hesitate to really call it vision. We have no idea what she might be getting from her eyes. I tend to think of it as information. It gives her some information.

In any case, we're very exciting about her interest in the alphabet... and it's awfully cute!

Busy Busy

 When you see a photo of Noa like this - pushing her shopping cart merrily down the hallway - it's hard to believe that she is anything less than your ordinary kid on the run. On one hand it's really cool to see her clearly enjoying herself and looking so wonderfully average and independent. On the other, it's kind of a strange shadow or fantasy... which I know sounds kind of depressing, but I don't mean it that way. I have dreams in which Noa is running or talking or looking at me, and this photo sort of reminds me of those. And she is doing great - making a ton of progress and this little cart (with an old stage weight on the bottom) is big fun. I certainly don't mean to dismiss what you're seeing here as being anything less than amazing, especially considering the fact that 6 and half years ago they weren't even sure she'd ever be able to sit up by herself!

And this morning Noa and I walked all the way down the swings in our building with her only holding one hand - which was huge. Even with the cart, she is really putting a lot of her energy into holding herself up with her arms and her abs. But walking one-handed makes her really take control of her legs, which is much more difficult for her. We had some rather dramatic mommy-grabbing moments and a few tumbles (she is good at rolling over to land on her butt, but not so good at putting out her hands). But overall she made it and was very proud - AND I could tell she was really doing most of the work because my shoulders weren't killing me (until I had to hoist her into the tiny toddler swing!)

Noa has also been working hard on communication. Learning to sign please and sign different food flavors (until recently food came in two flavors: same and different). She loves doing the alphabet, so I'll try to video that later.

All of this new stuff has led to some frustration and confusion. She learns something that she thinks is a sign, but it isn't, and we can't figure out what she is trying say... that's really hard. But we've seen this place before. She has a burst of learning and is over-joyed as her language catches up with her impulses, but then there are those places where signals get crossed. And almost as quickly as she learns to express herself more fully, she discovers new impulses that she can't express - and that is frustrating too. Ultimately it's a good thing when she gets to this place because we know a burst of learning will follow. But in the moment, it's a challenge (some head hitting, and hitting us - which is new, she finally figured out that hitting herself doesn't actually hurt us... which I guess it good?)

And as the final photo of this post demonstrates - learning and being frustrated and learning some more is exhausting!

Perky at Perkins

So after a night that involved very little sleep for the whole Sahl Clan, Noa had a wonderful day entertaining the crowds at Perkins! In the photo above she doing a combined PT/OT eval - but you can see she has gathered quite a crowd (you can't even see them all in this photo!) Noa's the one on the orange ball.

We started off in audiology which was, as we suspected, a tough way to start the morning (especially since I was in a bit of a flurry after causing us to be late - don't ask). After initially fighting off all efforts to get her engaged with toys, or to get her to take down her hood, or to touch... well pretty much anything, she did finally do a good job of sitting still and listening the music the audiologist was playing and responding to her prompts. Audiology is always tough, there is something about it that feels doctor-like to Noa. As a result getting any kind of testing done has been difficult (impossible) so even with her struggling this was the best we'd done.

But it didn't take long for Noa to realize that she liked the folks at Perkins. They all talk with their hands, they all want to play cool games and they are all willing to clap and tell her what a good girl she is... what's not to like!?!

I won't go into too much detail here because if I start I won't know how to stop, but it was incredibly thorough evaluation - we were there until 2:30 and aside from a lunch break Noa was interacting with the team there: vision, behavior, speech, PT, OT, O&M, behaviorist, you name it! Occassionally Ben and I would go off for a seperate interview. Noa held up like a champ! Did did a lot of signing and talking and was eager to try/learn whatever was asked of her.

It's hard to explain how wonderful it is for all three of us to be someplace where we are surrounded by people who understand our lives, our challenges, the things that excite us and the things that concern us. It's inspiring to see the other kids who are reaching their potential there in such a loving and supportive environment. We learned a lot too - our minds are sooooo full!

At the end of the day we returned to audiology to see if Noa would put up with more (either because she was tired, or more trusting). Much to our amazement, Noa allowed the therapist to not only look into each ear (without screaming), she also allowed her to put a little ear bud in each ear for about 10 seconds (without screaming).

At the end of it all - Ben and I were exhausted, but Noa was her usual little jumping-bean self. Oh, if only she could drive! But once we got home she zonked out pretty promptly.

The folks at Perkins will now take all the information they put together and - after meeting (which happened on Friday) - will put together a report that we'll be able to use as a guide for our own work with Noa, for the teachers and therapists who work with her, and for her IEP with the Board of Ed.

Spa Girl

As you see, Noa seems right at home on a spa girl vacation!

We had been telling her that the big trip with Mommy and Daddy was her birthday trip - and made sure that the hotel we booked had an indoor pool and whirlpool. The pool was actually fairly warm but she pronounced cold pretty quickly and moved to the whirlpool where she enjoyed floating on her back, sitting, playing with the air jets and splashing Daddy.

Even the ride was pretty painless - Noa enjoys big trips. She cheered as soon as she felt the car seat and took a big step up to try to get into the car herself. She even used the rest stop potty.

After our swim we had a lovely dinner with Ben's Aunt Holly who lives not far from Perkins. By the time we got back to the hotel Noa was properly exhausted and ready for a good night's sleep... or so it seemed.

Noa woke up at 3:30am - perhaps it was the strange location - and didn't really fall asleep again until about 6:00am. 



Unfortunately we were scheduled to be at Perkins at 8:00am. She wasn't awake and unhappy (Ben and I were awake and unhappy though.) Noa was mostly laughing and babbling to herself. Nonetheless, it was overall a great day and great fun for all of us to get out the City - if even to go to a hotel by the highway for the night.