Tuesday, November 29, 2011
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!
Friday, November 18, 2011
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...
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!!
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!!
Sunday, November 6, 2011
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.
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.
Tuesday, November 1, 2011
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.
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.
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