How Far We've Come...

Well we've had quite a year in the Land of Noa. The progress can feel slow sometimes, but looking back at my posts from early January 2011, the progress is enormous. Last year we spent much of the Christmas season trying to figure out what "sheee" and "shaaaaw" meant and Noa was very frustrated. We never did figure that out.

This year she's got a ton more words and can figure out how to ask for most anything she wants (though often will need us to list those things - but she knows the signs and we're working on getting her to intiate them rather than waiting for us). The frustration is much reduced.

She's also making huge strides in conceptual thinking - she loves to find and recognize shapes, sort her blocks and other toys into their proper bins, and she gets that the little bumps on the page tell us a story! In the photo above she is holding one of her new Brillo Blocks (Christmas present) while I read her favorite night time book "The Story of Ferndinand" - she LOVES that book! And in the photo below she is enjoying her first read of "Madeline" which was a gift from Grammy and Grampy.

She still loves throwing blocks which is getting to be a problem because she's so darn strong! She actually has good aim too. She listens for where people are and then tries to hit them. It's great that she is getting a sense of direction... still, it can hurt! And she laughs if you say "ouch." She also laughs are her own farts. She is very sophisticated like that.

Other big developments: Noa ends the year really self-feeding, though scooping can still be a challenge. She can't really see if she has anything on the spoon and can't tell is stuff is dripping or falling off the spoon... until it falls, but we're working on that. We're also moving toward more time in big-girl diapers (otherwise known as underwear). Noa is actually pretty solid on toilet training - except at night - but she actually doesn't care for the underwear yet, and I have to admit that sometimes we're just overly cautious. If she does have a mistake it's usually because she told us (by signing) and we missed it, so that isn't really her fault. It is a bit of a drag that at nearly 7 we're still dealing with diapers, but I think that if she could get up and go to the bathroom herself that we'd have been done with them long ago. She actually really loves being on the potty and frankly would probably spent half her day there if we let her (she really likes to flush and zip her pants up)

We do think she is getting more stable on her feet. She likes to walk holding just one hand, but tends to loose her balance. I can't say that we feel like we're anywhere closer to independent walking, but she has a much greater awareness of her body in space. She likes to climb up onto chairs and on to the couch. She has more control when trying things like sitting down on the floor. At my parents house for Christmas she did a fantastic job of coming down the stairs - which is very hard for her and takes a lot of focus.

SO all-in-all, it's been a great year for Noa! Perhaps one of the most exciting things is that she really keeps learning new skills and making steady progress and though there are likely many challenges ahead in the new year, we feel like Noa is up for new challenges and that makes all the difference in the world. We can only hope that our tired, older-parents bodies can keep up with the demands!

Holiday Update

It seems appropriate for this holiday posting to include a photo of Noa hanging with family (in this case with me, Cousin Electra and Uncle Jamie) - but this is actually a photo from Thanksgiving - which should give you an idea of how far behind I am!

Over the holidays I got a lot of questions about our bus situation and I'm very pleased to report that we have a new bus driver - the whole thing took about a week to resolve (props to Daddy Ben who took carried a lot of that weight - literally and figuratively - since I was in the midst of finals at school).

The Office of People Transportations (my fav name for a department ever) assigned an inspector to our case and after some research - including and interview with us - the matter was resolved in what might be called a holiday miracle considering what we were up against. We'd been told it was nearly impossible to get a driver off a route. Noa's new driver is a very lovely woman who tells me to have a "blessed day" every time I see her. Her new matron is also lovely and clearly cares a lot for Noa. The two of them certainly make us feel better and Noa has not had a single incident of screaming since then which is very reassuring for us.  Dealing with a totally non-verbal child, you spend a lot of your time having to trust you gut. In this case we knew we didn't like this driver - and Noa's behavior seemed to indicate that she felt the same, but until we actually made the switch there was just no way to know if it was him or some issue that she was having with buses in general or school, or what. So that is a huge relief!

Noa had a great Christmas. We went down to "Grammy and Grampy's" in DC. Noa was great for the ride there and back - didn't even need her zuzzies (electric toothbrushes) once! We were happily suprised. Also didn't need them to sleep there (apparently she just accepted that they lived at home - we actually had them with us we just never offered and she never asked - though she did ask for them as soon as we got home).

I will update more on other events... I hope before the end of the year! Noa is off of school this week so Ben and I are trying to juggle things around so that Noa can have a great break, and we both can actually get work done. Wish us luck!

Just When You Thought it was Safe to get Back on the Bus...

Well, the wonder of Thanksgiving weekend was quickly followed by the vagaries of the NYC School system. We woke up Monday morning to a new bus driver. Why? Some union rule in which drivers are given the opportunity to pick their routes twice a year to get routes they want. I'm all for unions, but I have to admitt that I can make out how this could possibly be good for the kids, especially in the case of special needs kids.

In any case, Noa and the new driver immediately did not hit it off. She had huge screaming fits on the bus with him. We don't know why - maybe the new driver, maybe something else completely, the problem isn't so much the fits as it is what he is saying about them (she has had screaming fits before and we deal with them - trying to sort out what the problem is and addressing).

But on Tuesday (day two with Noa) he asked if we had drugs for her. When I said I didn't drug her, he suggested that we should. The next day he said he wanted to pick her up 20 minutes earlier (remember all we went through to get the shorter bus route???). He said he wasn't able to get to school on time. When we called the school they said she did get to school on time. Wednesday afternoon he told me he felt that we should go on the bus with Noa - or have someone go on the bus - because Noa is impossible and out of control (there is a matron on the bus, and only one other child). He also told me that Noa's screaming and shaking in her wheel chair broke the lift on the bus. Yeah, right, all 42 pounds of her.

Soooo all that to say that Noa has been home since Thursday while we battle with the powers that be and try to get a new driver. This guy obviously shouldn't be driving special needs kids. But it takes time and it's unclear if we'll succeed. Don't know what we'll do if we don't win this one - he probably already knows we put in a complaint (and so did the school) - plus they are also changing the matron so that will be another new person on the bus... ack!

BUT as you can see Noa is taking it all in stride. The photos are actually from her trip to the Children's Museum on Friday with Daddy. She seems to be enjoying the whole thing!

In the photo above you put letters in a dino's mouth and then he says the letters. In the photo below she is playing with tubes that blow air - what could be better???

As for Mommy and Daddy - well it's a bit more complicated to try to make this work but hey, that's just another day in the Land of Noa!

Wish us luck this week trying to sort it all out...



Fun with Uncle Jamie

Below you can see some of the great photos of this past Thanksgiving weekend - Noa had a great time! This fun clip shows Noa enjoying the hand-slapping game that she taught Uncle Jamie. She insisted on playing this game for quite some time and luckily Uncle Jamie is very patient! Simple hand games like this are great fun for Noa - plus they really offer the opportunity to have an interactive relationship with someone that is special.

Fantastic Family Fun Time!

 It was a great Thanksgiving in the Land of Noa with Grammy, Grampy, Uncle Jamie, Aunt Leuisa, Cousin Elecktra, Mommy and Daddy and even Noa's favorite photograher-friend Talya (otherwise known at the clicking lady)! As you can see, she really enjoyed having her cousin Elecktra around, and Elecktra was very patient with Noa who was often just reaching out and touching her sort of randomly.

In addition to doing some great playing, and having a tremendous amount of fun, Noa also did a great job eating for Grampy and sitting at the table with everyone (though she had usually already had her dinner). She gave Grammy some great hugs, taught everyone how to play her favorite hand games. On Sunday night just before bed she just sort of randomly gave me a big, happy, laughing hug and I couldn't help but feel like it was in appreciation of the great time she had hanging out with family! 



Read with Noa and Daddy!

Okay, this is really exciting!
As many of you know, Noa's favorite thing about books has always been just turning the pages really fast and enjoying the breeze. We've tried with some marginal success to interest her in braille - sometimes she'll let Melissa do some braille reading with her, but for the most part she didn't really seem to get that the words we were staying were connected to touching the page.

FYI sidebar - braille kiddie books often come with the braille on clear stickers that are stuck on the pages so non-blind readers can read the book. They say it's pretty impossible for a non-blind person to learn braille by touch.

BUT all that changed this week.

On a website I found a copy of "Ferndinand the Bull" with braille added. Ben and I both LOVE Ferdinand and actually have copies from our childhood that we've read to Noa before (though I can't say that she showed a special interest in it per se). But when we sat with Noa and read the book, running our fingers over the braille, Noa really caught on! In fact, a few times she has gotten to the end and asked to do it "agin!"

The video is kind of long just so you can see how excited she is with every turn of the page - and how she immediately goes to feel for the braille. She really seems to get that it's a part of the story. Sitting and reading to her like this is a real treat for all of us. You know, it's the seemingly little things...

Wavin' the Flag!

Check out Noa at NYC's Veteran's Day Parade - sucking on her zipper, listening to marching bands and waving the old Red, White and Blue while our troops march up Fifth Ave!
Going to the Parade was a Daddy/Noa date (NYU didn't take the holiday, but Noa's school did). Noa got a flag at the parade and - as you can see from the photos here - she really took to flag waving. She held onto the flag for the rest of the afternoon. She even took it with her to the potty!


In other news, we all had reason to celebrate when we got news that we were going to be able to switch our Social Services to a new Organization: SKIP of NY which unlike our previous (non-functional) service organization which shall remain nameless, actually specializes in working with kids. We did our intake meeting with SKIP and they gave us piles of paperwork to fill out.


They also surprised us by explaining that the wavier service that we'd been approved for (back when we nearly had to go to court to keep Noa's Medicaid waiver) was somthing called Home and Community Habiliation - rather than Family Education (which was what we thought we were getting).


Shortest way to explain this: to get a Medicaid Wavier you have to prove you have an approved Medicaid Waiver Service (not all Medicaid Waiver services make you Medicaid Waiver eligible). Head hurt? Don't worry, just trust me - you need to be approved for one of a handful of services that vary from inconvenient to very useful.


We thought we'd been approved for Family Education - which would mean that we had to go to a class to learn about raising a disabled child.

What we had in fact gotten is something that is much more useful, and apparently really hard to get because it's more expensive: Home and Community Habiliation - which would be someone coming into the home to work with Noa, teaching her various self-care and life skills like brushing her teeth, or buttoning, or whatever - once a week for three hours a week!!!


This sounds great, right? Here's the thing - we should have been getting that since JULY! (which is yet another reason to call the previous organization non-functional). I called and called them to set up the Family Education - but they never called me back. Funny. Ha.


Needless to say we are THRILLED that we have been approved to transfer services to SKIP as of the beginning of December. In just the one meeting with them we learned more than we'd learned in nearly four years with the "other." So that's a big victory here at home!!

Stickering for the Cause

Today Noa did her first charitable work today, making Thanksgiving Cards for folks served by the Meals on Wheels program here in NYC. Our building had actually set it up as a day of service activity in the Community Room, and we thought it might be an activity that Noa would enjoy - and actually particpate in. Btw, if you check out the little furry hands around her neck, she insisted on bring her stuffed monkey which hung around her neck for the whole thing.

It turned out to make for a great family event. We walked to the community - Noa walking and holding our hands, which is her favorite way to walk with Mommy and Daddy. I think she thought we were just going to the swings, so she was a little confused when we went into the community room. Initially she signed "potty" - perhaps she thought that was why we went inside, but when we got to the potty she didn't have to go. Back in the room she seemed to be angry at first. She didn't want to feel the table or the chair and started to stomp and complain immediately, but we picked her up and put her in the chair and just keep going. Eventually we were able to interest her in having us trace her hand with a crayon. She also trying drawing a circle and star and a triangle with me. But when we found these stickers... that's when it started to be some real fun for Noa.

Noa actually ended up making four or five cards. A few with crayons (and added support from Mommy and Daddy) and a few with just stickers. Then we walked to the swings and did that for a while. And we walked back home. Noa had a great time and so did we.

Noa on Parade

Just a couple of photos from our building Halloween Parade (thanks to Melissa who helped Noa get dressed up and took her down the parade - because I had to teach until 5:30 - and who took the photo of the three of us!)

They started the parade later this year, which probably made it easier for lots of parents - including me - but made for a dark parade with not a lot of great photo opps. Noa was a colorful Witch and I was proud of her for wearing her Witch Hat for the whole thing. She did about half of it with her walker and half holding our hands (which I think she likes better). She was clearly tired from whatever they did at school for Halloween so after a walk around the garden and a little play time she was very ready to go to bed (we usually visit a Halloween party down the hall after the parade).

I love the photo with the three of us because it looks like she is pushing Daddy away so she can walk on her own. But in truth, I think she is just reaching out to make sure he's still there.

Halloween Parade

Okay, this is probably one of the crummiest videos that I've posted on this blog, but there's a reason. For the most part I use this blog to celebrate Noa's successes, and if I post about difficulties they usually involve Medicaid, or a specific behavior issue. But it's rare that I share much about Noa in relation to the bigger world around her. Partly because she really doesn't interact with the big, bad world that much yet; and partly because comparing her to other kids her age is just unfair and non-productive. But every once in a while it's good to stand back and get some perspective - if for no other reason than to recognize how much work Noa does everyday just to be able to show up at an event like this!

As proud as I am of Noa for doing the Halloween Parade, and as much as I know that Noa loves just being in the mix of chatter and excitement, it's hard to watch the other kids swarm past her. The grown-ups in our building are great and show her lots of encouragement and tell her how great she is doing, but other kids steer clear for the most part and we spend most of our time just trying to keep her in the mix of people because we know she likes that - and she really seems to get the idea that it's fun to wear something special and walk around with tons of people who are happy - but for Noa it's not about candy or getting to be a favorite character or running around with friends, it's about celebrating the fact that she can walk around the garden and people can see that she can do it. I think Noa is totally happy with that, and I don't think she has any idea that kids are running past her having a totally different holiday - but I will admit that it's sometimes hard for me to know that.

Other Video Opportunities

By the way, I've been slowly adding new videos to my YouTube Channel: http://www.youtube.com/user/sahlkina?feature=mhee#g/u
One that I highly recommend for a smile is "Mommy" which is a video of a Mommy/Noa Idaho reunion: I'd been in Idaho three weeks before Ben, Noa (and Jes who is in the video) joined us. Then watch "Tired" which is her just 10 minutes later.

Witchy Woman

Noa didn't like her Halloween Witch costume the first time I tried to put it on her. She just kept saying "off off off off off off" and trying to pulling it up over her head. But she really liked it yesterday, and in fact insisted on wearing it - along with the hat and elbow-length gloves - for a big chunk of the afternoon. She was so cute rocking out on the piano with it that I just couldn't resist taking some video.

BUT if you really want to see something cool - scroll down to the next post which includes a video clip of Noa's fingers actually tickling the ivories. As you'll see - although it sounds random - it is anything but.

tickling the ivories

As I was shooting video of Noa playing the piano yesterday, I happened to notice her hands - and how specifically and delicately her fingers tickle the ivories and I thought it might make for a nice video - especially because if you're just listening to what she's play it's easy to think that it's all sort of random. As this video shows, Noa is clearly making specific choices. (Perhaps it's just more advanced than any of us can really appreciate ?) She is really into this "Drumkit" feature right now. For a while she was really into anything that had a good sustain to it. But this week it's the Drumkit that has really caught her Halloween fancy.

Just One Scoop...

Just a short demonstration of why meal time with Noa can take a long long time. This video is one minute long, and as you will see, includes just two bites of food. She does better than this at school - and does better than this with pretty much everybody except me. She and I are just really having a Mommy-Noa struggle with meal time these days. When she bends her fingers back and says "stretch stretch" she is asking for her gloves and finger toys (which means putting on both gloves and a finger toy on each finger - before she will take a bite). So I'm trying to move toward doing the bite first and then getting the toys as a reward... slowly building up to two or three bites, but as you can see even getting one is a bit of routine at this point. She is very polite in this video, but we've had other incidents that include her hitting herself in the face, thrashing around on her chair and screaming as if someone set her on fire. Gosh, I'm sorry you all won't get to see that (not).

And as you can also see at the end of the video - she totally knows when she finally does the bite that it's good thing worth celebrating. So hopefully we can keep building on that. Just another meal in the life of... The Land of Noa.

Sunday in the Park with Daddy

Okay, I know it looks like this is going to play sideways, but it should re-orient when you hit play.

In any case, you should be able to get the idea of what is so lovely about this little bit of video. Noa is not only propelling the walker all by herself, she even figures out how to pick it up and turn it when she runs into the curb! And she runs into the curb quite a bit. We haven't figured out if it's her or the walker that pulls to the right, but she does seem to do better with her right side overall.

In other news - we visited Noa's school last week and got to meet with all her teachers and therapists. It's amazing what a busy day she has - Ben and I were exhausted just hanging out for the morning!! Noa seems to really be enjoying school and engaging with the activities in the classroom. They sang a song about fall and the teacher dropped play leaves on the the kids heads - and Noa did a great job of helping to pick them up and even felt around on the floor in front of her when the teacher told her there were some near her feet.

Then it was time for a visit from a thearpy dog - Hearst. The teacher told the kids that they would have a visit from their friend with four legs who says "woof woof" and Noa immediately said "Sog!" It was lucky we were there to interpret for her: Sog is what she calls her stuffed animal Dog (who is actually a horse... but that's a different story). The only bummer was that I think Noa was hoping for her Sog, rather than a real-live dog. But she took it pretty well and even reached out when someone said that the dog was wagging his tail.

Also - just FYI - I posted some more video on our YouTube "channel": http://www.youtube.com/user/sahlkina?feature=mhsn#p/a/u/0/c67gFrLa1R4
I was kind of surprised to see that our video of Noa flushing the toilet had over 500 hits, and the one of us telling her it was bathtime had over 700. Apparently this was enough to make Google thing we might get enough hits to warrent selling ad space. SO I figured I ought to put more up on the site, and if you see ads in the future - hey, living in the Land of Noa ain't cheap!

Halloween Here We Come!

When Noa lost her first front tooth a few weeks ago, we were pretty sure its partner tooth wouldn't be far behind. It was already loose, and there was pretty much nothing to stablize it on either side - in fact it seemed to be in a different position every time she opened her mouth. Still, it managed to hang on for about three weeks... until Mommy finally decided to intervene (and thanks to Aunt Pate for the suggestion of rubber gloves to get a good grip on the tiny, slippery thing).

Noa took it all well. We'd been talking about it for days. She'd open her mouth and show me the tooth - and I'd say "do you want to give it to Mommy?" and she'd sign "No. No." One night even woke us up in the middle of night and was signing "help help" and showing us the tooth - though she wouldn't let me touch it.

Finally, Monday night, she had gotten to the point where she didn't want to eat or drink at all. You know when pureed food is too much to bear, it's time for the tooth to go!

Ben and I decided that we would just have to yank the tooth (we=Mommy, of course) and that it was probably best to do it in the morning before school so she could at least get some food in her. So we woke her up and started talking about the tooth - finally we told her it was time for the tooth to go bye-bye. She signed "no, no" and "finished" - but we just assured her that it was okay for the tooth to go away, that she was a big girl and all that good stuff.

While she objected to the idea of mommy touching her mouth and taking the tooth in principle, she didn't seem to object too much once it was out. And she recovered pretty quickly: just played with the empty spot for a minute, asked for a drink and then proceeded to eat a double breakfast.

And so now, just in time for Halloween, we have Vampire-Noa!

Mark This Day!

Okay, Okay, I know I just posted an entry a few hours ago, but just before bedtime Noa did something really amazing. Drum roll please............

Today - Wednesday, Sept. 21st - at 6 1/2 years old - for the first time, Noa stood up from the floor all by herself!!!!

Why this photo? Because she was sitting on the floor and stood up to play the piano that is on the table behind her in this photo.

She was chilling out on the floor playing with her blocks, much as she is in this photo, while I was in the kitchen washing dishes when she scooched herself over to the piano reached up to play with the keys. She made this noise that she sometimes makes when she shines "more" so I asked her "more what?"

She signed and said "piano."

I asked her "do you want to stand up?"

She said "san-up" and then, before I could even get to her she started to stand up. I got there in time to spot her - just in case - but she got all the way up on her own. Yes, she did use the table to steady herself, but frankly it's not a terribly strong, stable table. She was very proud of herself, and so was I!

Bruiser

Oh what a month! September: back to school, new classroom, new teacher, new friends, new bus that shows up repeatedly at 9:15 when school starts at 9:00... in Westchester! But no, Noa doesn't look like this because she was bullied in school or on the bus. She actually just has some funky dry skin on her eye, and then lost a front tooth!

The tooth had been loose for a few days. At one point - on Sunday - she tried to pull it out but it didn't want to come. It bled a bit, but it stayed in place. A few hours later in the bath she got mad at me because the water was too hot, or too cold, or too soft, or too hard... it was too something and I couldn't figure it out so she did what she sometimes does and gave herself a little jab in the chin (I've explained to that it doesn't hurt me when she does that, but she does it nonetheless). In any case, she knocked the tooth right out!

There was a little blood, and at first she kind of freaked out. She really seemed to get the fact that she'd just lost a piece of her body that had been there just moments before (and I think she liked playing with it). But I just kept reassuring her that it was it alright - that it was supposed to happen and it meant she was a big girl and within a couple of minutes she was laughing and it was all very funny.

On Monday we went to the doctor and got some cream for the eye. But she's still kind of sporting that tough kid look. The other front tooth is wiggling up a storm and we expect it to go at any moment. Her teeth tend to hang in there a while since she doesn't eat solid food.

The other excitement Monday was a visit from Sam Morgan of the NYS Deaf-Blind Project. After YEARS of trying to get Noa in, she has finally been accepted for services! This is a huge deal for all of us - as a blind child who communicates mostly with sign, she is a bit of an odd duck. She just doesn't fit any easy definition. She seems to hear technically - but processing what she hears and/or how to speak is definitely a challenge for her. But all these things have Federal definitions (and they get funding by serving people who fit into that definition) so for odd ducks, it's a battle. ANYWAY - this gives us access to the kind of services and support that we've been longing for - and that Noa really needs: support at school to help her teachers and therapists work with her, and support at home for Noa and for us! One of the greatest challenges we face is that Noa is just plain smart - but her communication skills can't keep up with her cognitive abilities, and filling in those gaps for kids who can't see and who don't follow what they hear is really tough.

We've all seen frustrated kids who can't quite express themselves - this frustration ultimately pushes them to watch and listen to others so they can learn these things, but Noa can't do that. And honestly, the timing for this couldn't be better because she really is in a place of some intense cognitive growth and she gets very frustrated about not being able to tell me what she wants. Sometimes after spending a long time, with me listing things she might want, she just signs that she is sad - and that is really heart-breaking. I tell her that I'm sad too. She is really patient with us, and I'm looking forward to getting the help we need to get her to the next level!

Flushing Queen

FINALLY - I figured out the video thing!!!!

** I has come to my attention that this video does not work on everyone's computer (despite my nearly pulling my hair out to make it work!). Unfortunately the only real solution I can figure right now is going to YouTube.com and searching "Flushing Queen." **

Okay, this is fun. You can see that we have arm rests on the potty now - so Noa can pull herself up on to the potty by herself (no step stool needed anymore). She also likes to stand on her own, and pull up her diaper and pants - and can even zip her pants. She also likes to reach back and hold Mommy's hand she flushes the toilet. But she never flushed it herself... until now.

Imagine our surprise when - having left Noa alone for a few minutes on the potty so we could pick up some toys - we hear a resounding FLUSH. We ran into the bathroom only to find this little munchkin giggling away and rocking out to the sound of the toilet bowl re-filling. As soon as it quieted, she reached back and flushed it again. That's when I got the video camera. I suspected she wasn't finished with her new game and I was right.

I can't help but think back to the days B.N. when our pride and joy was our toilet-using cat Shekhina. People always asked us if he flushed. "Lord no!" we exclaim. "If he could flush that's all he'd do all day."

Miss Fancy Pants

Back to school and Noa is already asserting her "big-girlness"! The photo here was actually taken a few weeks ago when Grammy and Grampy were visiting - but it's such a great picture of Noa being her hip, cool self and it really shows off how big she is standing next to me.

Monkeying Around

Now that I've found a way to connect you all to video (even if I can't post it directly on the blog), I'll try to post some of the stuff I've been meaning to post for a while. But here is a nice clip from yesterday -

http://www.youtube.com/watch?v=Cswo992u4Pk

Check out out Noa looks from side-to-side to find the Monkey's face. She has been doing more and more of this. I suspect she is "seeing" something, but as you can see the Monkey's head is always touching her so she can follow it that way - AND she gets that the head (or face) is something to look in the direction of. As simple as that sounds, that's a big deal. After all, where do we get the idea that we should look at a person's face? For us the face gives us important information (identity, but also expression). Blind kids tend to look down (esp. kids like Noa for whom it might be preferable to not have all the visual clutter of looking up which can be distracting). But Noa really gets faces and also turns her face to people more now too. It's actually hard to convey what a big deal that is for us - just emotionally to have her attending to us by turning toward us, it's just a level of interaction that is nice to have - it's a connection even though its not a visual one (if that makes sense).

The other cool thing is that Noa totally made this game up by herself. I just happened to be able to snag the camera and catch it.

FINALLY - WE HAVE VIDEO!!!

Well, sort of.

The video isn't here, it's on YouTube. BUT it's there.

You'll have to cut and paste the link - yes, I'm sure there is a way to create a link, but I'm really truly done with trying to make it happen - and I'm pretty sure it'll be worth a few extra clicks of the mouse to get to see....

Noa's new-found independence: getting into her wheelchair by herself!

http://youtu.be/NYkhUajuc4s

Other new tricks include finding her sit n' spin and getting on and off it by herself and getting out of bed and/or off the couch by herself (luckily she got out of our bed by herself to pick up a stuff animal, she realized that she couldn't reach down to the floor by herself and woke up Daddy to help her). She also likes to have her bin of stuffed animals next to the bed so she can pick which ones she wants by herself. The ones she doesn't want, she throws at the window or, more precisely, at the blinds which makes a very funny and apparently satisfying noise.

Noa is off of school now for a couple weeks before the regular school year starts up - so I'm sure they'll be lots to report. Will I find the time to actually report it? Stay tuned to find out...

Sophisticated Lady

Phew! How nice to shift back into talking about Noa - instead of all the yucky battles that we have to fight (I'm sure there will be more, but right now I'm enjoying a quiet moment).

PLUS there are so many great things to share! Here is Noa listing to Daddy read to her. She really seems to like this particular book: Don Juan by Lord Byron. Yep. She really likes it. But she's always had sophisticated tastes. When she was younger some therapists thought she had no attention span because she had no patience for Mary Had a Little Lamb - the truth is what she really wanted to listen to was Pictures at an Exhibition, or maybe something by The Silk Road Ensemble. I took her to listen to them live when she was about two years old. She did a solo in a family drum circle with them and ended up really hitting it off with them - later she got to try a bunch of their instruments. They were very cool.

ANYWAY - while she has always had very sophisticated taste in some things, she has been way behind the curve in so many things that are just basic kiddie milstones, like putting food in your mouth or rolling over... both of which she did last week all on her own!

While she will eat with a spoon, she has never put food to her mouth with her fingers - or licked food off her fingers. But she has been using some hand lotions with different smells, so I was able to get her finger near her mouth this week when she accidently touched her food (she would never let me put her finger in the food on purpose!) And once it was up there, just a little step to touching her lip and realizing that it was yummy. We got 5 or 6 fingers of food in before she decided she'd done enough, but it was a great start!

Then later that afternoon, she just did a little log-roll all by herself on the way to trying to stand up, which was great. Tummy time used to be the most tragic time of all for her and she always hated it; never learned to crawl at all - and while she will occassionally get to hands and knees now, I'd never seen her just roll like that.

Over all, just a lot more self-motivation, which is great but has led to some interesting discoveries as she becomes more adventureous about moving around the apartment. Like the other week when I left her in her play area to take a shower (used to always be a safe bet) and got out my very short shower to find her by the front door, having knocked over an umbrellas stand, playing with a bat. Guess it's time to do that child-proofing other parents are always going on about... hm.

Chin Up!

Quite amazingly, after numerous calls, emails, texts, running around to HRA, MAP, Medicaid "Help" Desk, OMRDD (not OMPDD), EPI, SKIP, etc., Ben (who is a terrier to be feared when he's got his teeth into something) FINALLY reached someone who at least knew who we needed to talk to. So after months (literally) of dealing with people who said they wanted to help but couldn't, or didn't even know how to, we finally found the one (and I think there was just one) who could. Not only that, he happened to reach her at just the right moment.

Just as I was leaving our MSC's office (having gone there to pick up copies of everything she'd sent in on our behalf so that we'd be ready for the hearing Tuesday) -already IN the elevator on my way out of the building - Ben texted me to say that he had someone on the phone who could help but she needed to talk to the MSC. I took the elevator back up and stormed right into her office. One short conference call later, agreement was finally reached! I really thought I was going to burst into tears (I think the MSC was going to too).

We're still waiting for the letter saying that the waiver is granted, but the wheels are moving (which on a Friday in NYC in late July is no small miracle). We still have to go to the Hearing on Tuesday, but it all goes as it should we'll be going with a letter stating that the wavier has been approved.

Of course yesterday we got another threatening notice threatening to cut us off on different (though related grounds) - but it seems to be a matter that will aslo be resolved by the waiver so chin up, we muster on to the next adventure in the Land of Noa.

at least the pictures are pretty...

Thanks to Facebook, I sometimes forget what I've posted on the blog and what I've upload to FB from my phone, but wanted to get these up here because they are cute and make me smile - Noa is wearing an old pair of my glasses by the way. She likes putting them on and taking them off. She even made up the pretty bead headband herself. Very creative.

So.... you might want to look at the cute pictures every once and a while as you read this post.

Mostly on this blog I've been focusing on Noa's successes, and even in the time of trial I've tried to focus on her - not the system. But the system intrudes and so often takes Ben and I away from focusing on Noa so that we can fight with the people who are supposed to be helping her (and us!).

Tuesday we have a hearing to determine if Noa's Medicare will be cut off. Back in April they suddenly sent us a notice saying that in 3 weeks she would cut off because they approved her by mistake (their mistake, not ours).

This was especially surprising to us because we went through a lot of trouble to get Medicaid... 3 years ago! And every year we've had to re-up her Medicaid (also no small task) and every time its gone smoothly.

All of Noa's therapy - basically her school too (which is where she has most of her therapy) - is paid by Medicaid. So to cut her off without warning basically take her out of school and therapy and we'd have to start all over which would take up to a year. If she did not qualify for Medicaid that would be one thing... but she does. There is a whole catagory of Medicaid specifically for kids like Noa. And everyone we've talked to agrees. The problem seems to be some paperwork.

We applied for a fair hearing and got services extended until the hearing (which is Tuesday), and resubmitted all our paper work (from soup to nuts, not just the stuff they thought we were missing, because the apparently couldn't find some of her paperwork). We were hoping we'd hear back about the new application before the hearing - making the hearing unnecessary. But we haven't heard. I'm sure at this point my legal advisor (Ben) would tell me to say no more about the particulars our situation, so I won't. But I will say that we've spent the past 24 hours trying to figure out if - after all our efforts - we still didn't have all the right paperwork. It now seems that do, but if you want a sneak peek at what that road is like, check this out.

The OMRDD wavier, which is now an OPWDD waviers, covers all the same stuff as a CAHDD or CAHPD but it doesn't waive all the same things and has different paperwork. In trying to figure out what is waived in each Ben visited the Help Desk at MAP, which is an arm of HRA. They said to talk to CAH, but CAH didn't know how to apply for a CAH and sent Ben to MAP. They sent Ben to a website that also didn't have it the form. If you click the link it takes you to OPWDD - because you still need OPWDD eligibility to get the CAHDD Or CAHPD - and we have that. This all has to be done through your MSC who can prove that you already have a FAP (which you get by getting a FAP service, but you can't get that unless you have a waiver - which you apply for with your MSC that is assigned to you after you get your FAP, and there's a waiting list for that. But it doesn't matter because you don't have the MSC or a waiver to get you the FAP, so you have to prove that if you had a FAP, then you could get an MSC - which you can only get once you've been approved using the form that only your (non existent) MSC can submit for you. Of course you can't get any of this until after you go through the process of being rejected - at which time you can apply for approval.

Confused? Maybe the cute pictures will help? Yeah, just look at the cute picture and cross your fingers for us Tuesday!

Back to (Summer) School

Got this great photo from Noa's teacher today showing her enjoying "sports week" at school.

We feel very fortunate that Noa has summer school so that her therapy can continue through the summer and its especially great because it keeps her busy doing all kinds of great indoor stuff when it's so hot and uncomfortable outside! As you may recall, Noa doesn't sweat properly so being outside in the kind of heat we're getting right now is just plain unhealthy. But she loves school and as you can see if having a great time bowling.

What Noa Did on Her Summer Break

Our Idaho vacation may be over, but the memories linger... unfortunately so do my ongoing issues with rotating video so that it posts on the blog properly. Oh well.

Well you get the idea of the one-hand walking from the photo anyway. Since coming home, Noa continues to want to try to walk holding just one hand. Sometimes she gets some real steam going, but balance is still an issue (I think she hopes speed will make up for balance but that only works for so long). But she really wants to make it work and our experience has been that once she gets it into her head to do something... she's eventually going to figure out how to do it.


In this photo from the fabulous Gold Folks hot spring you can really see just how long Noa is! She's downright lanky. She is really doing all the work here, I'm just giving her a little reminder every once in a while to arch her back "up up."

Noa also likes go from me to Ben, and then from Ben to me. To call it swimming with be a stretch, but we're working on getting her to use her arms and legs to propel herself. She has this insane level of confidence in the pool and keeps trying to go off on her own only to realize that she actually does need someone to hold onto to keep her head above water, but that doesn't stop her from taking a few much-needed gulps of air and then trying to escape again. She can actually stand in the shallow pools at Gold Folk so she was able to work on standing in the water the alone (and kneeling in the really shallow places) and bouncing -- and she really enjoyed that. I think she feels very free in the water - it just holds her in a way that air doesn't and that makes her more aware of her body in space which can be a challenging awareness for blind kids.



I don't know if this photo shows how tall Noa is, or how short I am!

4th of July Report

Hard to believe we're already getting ready to leave McCall! We've had a great time - and Noa has been doing some amazing stuff. I'm sharing a few photos here, but when we get back to NYC I'll upload video from her Independence Day walk with Daddy in the Park. She likes to do one-hand only walking now. When she does it with me holds one hand and then puts the other hand on her arm exactly where she wants it.

Noa has been enjoying lots of bike rides (sitting in one of those bike trailers). She makes a motor like noise - and sometimes insists that Daddy "go go" - mostly when he slows down because he's pedaling uphill. Noa doesn't like that. But she likes the more off-road paths in the park that are very bumpy. Noa has also been doing a great job in restaurants (as you can see in there photos). Of course is helps when she can sit outside and feel the breeze.
And of course... the hot springs. Yesterday Noa really floated on her back all by herself for a long time. She really gets it. When she would start to sink, I'd just touch the small of her back and say "up" and she'd say "up" and push herself back to floating. She even did some kicking, and some jumping in the water all by herself. We love the water -- it's one of the few activities that actually exhausts Noa without also exhausting us!

Noa likes saying "up up" when she is standing and pushing up various parts of her body - she gets that she has to lift up to stay up. Yesterday she also liked lifting her shoulders up with I said "up" and then letting them down when I said "down."

She is also learning to stack blocks - and is doing a great job (as you can see from the stack in the photo - though I did help her pick which blocks to stack). She can identify circles, ovals, squares, moons and rectangles on her sorting box, and loves putting together snap beads. So of course, all that keeps her very busy. She has had a little loss in some signs - signing more more more more, with no object - but we're hoping that some of that has to do with the fact that she is just focused on so many other new things right now.

More when I'm in closer, more regular proximity to internet!

Land of Noa - Vacation Issue

So after a month away from Mommy... the Noa ship has finally landed in Idaho (thanks to brave and tireless Daddy who made the cross-country trip with her solo).

Noa is HUGE! I can't believe how big she's gotten just in the few weeks I was out here without her.

I met Ben and Noa at the airport but by the time they got off the plane she was more worried about her wet diaper than about me -- though she had a moment of registering that it was me. She gave me a big smile and happy jump up and down and then told me "potty."

After all day flying, Noa was a real trooper on the two-plus hour drive up to McCall. When we got to the house Noa took two steps into the place, stopped, realized where she was and then did a very big and joy-filled happy-dance with lots of rasberries and cheering: it was clear that she knew where she was and she was thrilled. THEN to top it all off, we went to the hot springs - arriving at what would have been her bedtime back home. But Noa mustered the strength to enjoy about a half hour of swimming - then back home and out like a light.

In our first few days we've enjoyed the playground swings, chilling at the Bistro, two hot spring trips, a party with live music and a great new toy - a stuffed octopus. As I type, she is on a bike outing with Daddy - sitting in one of those little trailer things on the back of his bike. As you can imagine, she really enjoys the bumpy, windy ride.

One thing that has made the trip much nicer for us has been a new special needs stroller for bigger kids. It's very off-road so we can go on hikes with her (since we can no longer carry her in a kiddy back-pack; her feet would drag on the ground!)

So all-in-all, life in the Land of Noa is pretty darn good.

One Step, Two Step and...

LOVE this clip of Noa playing with her cousin Elecktra - just yesterday! This really show how much more interactive Noa has become. One of Noa's BFF's (and ours) Sheila, started doing this game with Noa a couple of months ago - and suddenly about a month ago she got the idea that she could do it to us - which she really enjoys. I think this is the first time she'd done it with another kid, and as you can see she really enjoyed it. Elecktra enjoyed it too and they played this game back and forth for a while.

It's hard to explain how wonderful it is for us to see Noa - at 6 - being able to play interactively like this! Just a case in point, yesterday there was a huge street party on our block; very kid/family oriented: bouncy rides, giant slide, face painting, photo booth, games, etc... but absolutely nothing for Noa. She would have loved the bouncy rides or giant slides, but grown-ups weren't allowed and since she couldn't do them alone she couldn't do them at all. You'd think that after a while, one would get used to the fact that your kid can't take part in these things - and on one hand that's true. On the other, Noa is such a fun-loving kid. It never stops being hard to be someplace where your kid can't be a part of the fun. Of course, on the third hand, Noa wasn't aware of missing anything. She loves the sound of fun and probably liked just wheeling through the fair on the way to the playground where she had a great time on the reliable ol' tire swing. And course, having this lovely moment later in the day made it a great day after all!

Jump the Fence!

Here is a great example of how Noa letting go of us and making her own fun! (without pulling Mommy's arms off, which is an extra bonus) She likes to do this at the couch too. While it may seem like a small, cute moment, it's really huge that she is able to entertain herself and not be so dependent on us to bring the fun to her - and it allows her to figure out how to be creative and proactive in terms of how to make stuff fun. It's big.

(note the guest appearance of Noa's Aunt Izzy in the background!!)

Standing Tall

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.
She has been talking up a storm, got a new big girl wheelchair - with a stander coming next week - she's out grown her walker and now needs a bigger one (she is growing like crazy).
We're also very glad to report that Noa will be able to continue on at Blythedale School next year! Because Blythedale is a rehab hospital school it's really designed for kids to be there for a short time (one or two years) as a part of their rehab -- but for a kid like Noa, what does rehab mean??? When will she be "rehab'ed?" In any case, she is doing so well there - loves her teachers, her therapists, the other kids, even the bus folks so we're thrilled she be there next year!

BATH!!!!!

Okay, okay, so my attempts to upload this video have been thwarted long enough!!! I finally just decided to put it up on YouTube and provide a link: http://www.youtube.com/watch?v=kOQLp_Co5Bc&feature=youtube_gdata I just wanted to put this up for fun and to share one of Noa's great pleasures... the announcement of bathtime! Noa has been doing great stuff and I'm hoping to get more recent photos and news posted soon soon (this is probably about a month old). But as you can see, she understand immediately when Ben says "bath" - and she does the sign - then once she finishes her celebration signs that she is ready to "stand up."

Worth the Wait!

Wow, I can't believe I haven't posted since January. Real life just totally took over blogging life - guess that happens.

But Noa has been doing some amazing stuff in the past few months as this video will demonstrate. As you will see, she lets go of her walker for extended periods of time to sign - and looks very comfortable doing so. She's at that place where she doesn't even realize what she's doing - she is just focused on what she wants (in this case a toy called "hook" that vibrates) then she's perfectly comfortable. The walker gives her more confidence then trying to stand when she is holding our hands because if she loses her balance she knows where the walker will be.

She is also doing a lot of new signs and talking up a storm. I will will will try to get more stuff up because it's really wonderful. A few weeks ago we started a new plan: work on just two signs per week, and it's made a huge difference. She was learning so many signs in so many places and sometimes picking up stuff that she thought was a sign, but in fact was just someone doing a gesture (she's a sponge like that). So, while she may get a number of new signs in a week casually, we focus on two that at school, at home, in therapy we will also try to use.

Last week she did something amazing - she totally unprompted traced a circular cut-out on her chair and said "circle" (yes, said out loud!)

A few amazing things about this -

1) it was not prompted, so she just recognized the circle and decided to tell us about it - which is very unusual. She tends to just talk when she wants something. This was just to share!

2) she made the connection that it was a circle. She loves sorting shapes, and so she'd been checking out a lot of circles - connecting that all these things are circles is a huge conceptual leap for her.

So for now - enjoy this great step forward for Noa-kind, and I will try to get more up in short order.

Christmas and Communication

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 - !

Happy New Year!

I'm baaaaccck!

Phew, it's been a busy and long month-and-then-some. A lot to update, but try to get to it over the next couple of days (esp. Christmas of course!). I'm glad to say that I'm feeling great. I had surgery on November 15th, have been fortunate enough to heal pretty quickly and double-bonus-fortunate to escape this whole thing without having to radiation or chemo or anything that would get in the way of me just continuing to heal. As you can imagine, this is a great relief in so many ways.

Not picking up Noa for a month was plenty challenging - but probably more challenging for me than it was for Noa. She took it all pretty well. The first week the place was like a parade of all her favorite BFF's - plus a visit from Grammy - so she loved that. And the following week was Thanksgiving - with my whole family in town. The center of attention is just the place Noa likes to be. It really wasn't until the weekend after Thanksgiving that Noa had her first only-Mommy-will-do breakdown and by that point I could hold her hand, and that seemed to help (I had to be careful of even getting close to her at first because one of her favorite games is to slap people and make them say "ouch").

Thanks to everyone who helped out - I'm still overwhelmed when I think about all the love and support that kept us moving forward those first few weeks.

For those of you who don't know, part of the surgery was a breast reduction - something that my doctor had recommended over a year ago as something that might help me deal with my chronic shoulder pain. I'm very pleased to report that already that has made a huge difference and for the first time in a year I feel like I have to potential to feel physically better... which becomes increasely important as Noa continues to grow, and Ben and I continue to get older and more tired. We are hoping that 2011 will bring walking for Noa. We're going to do all we can to really try to get there before one of us snaps in half!

More to come soon!