ACCESS!!!! And a Cough-versation...

Okay, what's wrong with this picture? Can you guess? In order to use this handicap swing you have to go down the STAIRS! And no, there is not another way down. Lucky for us, Noa likes doing stairs and she can stand on her own, but for a lot of disabled kids this would be a big problem. Oh, sigh. Really, people? No one noticed this when they were installing it???

ANYWAY - as annoying as the swing's location is, this playground is very close to our house but I've never really used it before. It's actually a bit of a maze to figure out with a wheelchair (or giant disabled kid bike, which is what we had with us), so I just never really took it on but it's lovely and was almost empty - unlike the playground at St. Varten's which is often packed with pushy kids that no one seems to be attending to.

As Noa and I were going from place to place in the toddler area at the top of the stairs, there was a lone kid - about 3 - who kept running up to us and jumping in front of us. I'd wave to him and then he'd run off for a bit and come back again. I tried to get Noa to say hi, but usually by the time she'd respond he would be off and running again. Kids do this a lot to Noa because they are fascinated by the fact that she doesn't respond to them. It just seems weird. Which I guess it is.

As I was putting Noa back on her bike he ran up to us again, and when Noa - again - didn't respond he stood there starring at her for a bit thinking and then... he fake sneezed. "Oh," I said, "that was quite a sneeze." So he did it again.

"Bless you," I said.

Noa smiled and echoed "Bless choo." And then she fake sneezed.

And the kid fake coughed. Noa listened. The kid did it again.

Then Noa fake coughed. And I realized --- this is a big. I get why her teachers don't want to encourage her doing this all the time (especially the belching) but THIS is one of the first verbal exchanges that Noa has had with another kid, much less a kid she doesn't even know. This is a give and take conversation! Noa is creating a relationship to this kid that I don't have to facilitate. To shut that down just because it's not a socially accepted conversation seems to be risking cutting off the impulse to have an independent conversation so.... I guess I'm going to have to have a conversation with Noa's teachers come fall about how to deal with the fake coughing and sneezing and belching because it seems to me that just trying to make it stop is totally, 100% wrong.

I LOVE NY

 

Noa's last day of summer school was Friday, but I'm only just now getting to post these photos of her sporting her super cool 2000 World Series - Subways Series T-shirt which she wore in honor of "I Love New York Day." 

They've been having a new theme every Friday. It's a cute idea, but I have to admit that more often then not it ends up getting on my nerves - they just stuff a crumpled paper into her bag (hopefully on Monday, but sometimes as late as Wednesday) say something like "Friday is Black and White Day!" or "Animal Prints" or "Represent Another Country!" (during the Olympics). The one that really got me "Dress Like a Pirate!" The others I can understand as being part of what they're learning in school, but Pirates? What where they learning about? Theft? Kidnapping? Maritime Law? Plus it's a HOSPITAL school full of kids that are either recovering from surgery or have sensory issues or disabilities so... peg-legs, eye patches, parrots. Really?

But really I struggle with things like pirate day because at some level it's just work for me. I think for other kids it can be more fun to create these outfits, but Noa's just not there at this point. I do my best because she does really love it when people admire what she is wearing and tell her she is beautiful (who doesn't). In fact, she loves getting her haircut now because she gets a lot of compliments on it after. So long story... still kind of long (sorry) when I Love New York Day was announced as the final Friday I couldn't figure out what to do. I'd thought about just getting a cheap "I Heart NY" T shirt, but with my folks in town it just got away from me. The only things I had were T-shirts we'd been giving free by NY Hospital Medical Center Kids Unit and the Jewish Guild for the Blind/NY - neither of which were terribly compelling. 

Just as I was about to get a sharpie out and start scrawling on a shirt (Friday morning 1/2 hour before the bus) I remembered that I had a T-shirt - never worn - from when Ben and I went to the 2000 World Series. It was too small on me, so it was just sitting in a box waiting for Noa to get bigger. SO in a heart-beat Noa went from having the lamest NY t-shirt at school to having the COOLEST t-shirt dress ever!!! I was so excited about it that I think Noa got excited too - because she seemed very happy to show it off for these photos. Perhaps now the most compelling story about Noa, but it was a great day for Mommy. And a great day for Daddy too - because he'd forgotten that we'd gone to a World Series game - wow, what parenthood can do to the brain, that was a lifetime ago!

Chillin' with Family

 

August brought visits from Uncle Jamie and his crew AND grammy and grampy - and as luck would have it they overlapped just long enough for us to share a meal in the garden on one of the very few non-muggy days we've had in NYC since our return. The garden is one of our favorite things about our building in NYC. Not only does it make you feel very landed gentry-like, it's also a great place to take Noa walking without having to mess with the hectic pace of Manhattan sidewalks or 2nd Avenue traffic. 

Noa really enjoys having family around. Even when she isn't directly interacting with folks, she likes the excitement and chatter and energy of social gatherings in general but when she's with family she really seems to get that it's a special. And she love sharing her latest, greatest trick which is super-sonic belching. I swear, you'd think she was hanging out with sailors and 12-year-old boys!  

Noa's impressive breath control and manipulation of air channels seems to be somewhat lost on her teachers and therapists who made a point of letting me know that they are ignoring her belches... and her fake sneezes. The problem is Noa learned on vacation that people respond to these things. It's hard to tell friendly strangers who say "bless you" to stop giving her blessings! And frankly, you can't really stop other kids from enjoying a good belch. 

Plus I've got to admit there is a sort of genius what Noa is doing. If we're in the elevator or walking in the garden and Noa thinks there is someone around but she can't tell, she can usually find out by belching or sneezing and waiting for someone to respond. Sure it's not the most lady-like way to get someone's attention, but from Noa's perspective it certainly makes for a lot of laughter and what could be bad about that? Good question, Noa. Good question.

Picnic!

In any other child's photo album this would be just another photo - hardly worth commenting on. It's not even that great a shot of Noa. But for us, this photo marks an important moment. Believe it or not, this marks the FIRST TIME EVER that Ben and I, like so many other parents, sat on a bench at the playground and watched Noa play. Not only that, she's sharing the space with other kids who - while aware of her being different, and yes some kids sort of avoided sitting with her - treated her essentially like any other kid on the playground.

Where did this wonderful thing happen? Eisenhower Park in East Meadow, Long Island, at their all-access playground that is designed for special needs kids and typically developing kids to play together. It's a great playground - and it really makes you wonder because its so creative and all the kids were loving it. Really every playground should be more like this - where everything you play with has a wealth of sensory information and opportunity. There were panels on the ground that you could jump on to ring bells, things that spun and rocked, everything you could climb had things to touch and turn along the way. If you check out this turnabout, you can see the bar that this kid is using to push it - it's actually a break that is built in for wheel chair riders (who can turn the thing using the giant piece in the middle like a sit n' spin) - but the break turns out to be a great tool. The older kids who liked to push it created a whole game of stopping with the break so littler kids could get on and off. It was pretty cool. Noa was on this thing of a loooooooong time and we really did have to bribe her off it with food... mainly because we were hungry!

The trip to this great park was actually motivated by a picnic for NYPN - the New York Parents Network of the NY Deaf-Blind Collaborative. We haven't gone to a lot of these, but are trying to get more engaged in this community. It's tough because a lot of the stuff - like this - is not in the City and we had to rent a car to make the trip (we could have taken the LIRR and then taken a taxi or called someone at the picnic to pick us up but to tell the truth public transportation can be a real challenge with a disabled child on an average day - not to mention a NYC weekend which is all about schedule changes and track work - even without all the picnic stuff!)

The group at the picnic was small since it seemed like it might rain but we met some lovely folks and it was well worth the trip for all of us. Most amazingly we met the mother of a 17 year old boy with CHARGE Syndrome who told us that her son didn't start eating solid food until he was 12!!! Not only that, when I asked her how they finally succeeded she told me it was through a feeding therapist in Westchester quite near Noa's school. Granted, the issues were in many ways different but just to know that they got there was really just what I needed to hear after the disappointment of learning that Noa's school had decided to discontinue was going to drop her feeding therapy.

Rock On!

This very simple little thing brought Noa a great deal of pleasure because she could make it go all by herself - not to mention the fact that it offered an opportunity to show off her belching skills. You know when you inspire a passing 8 year-old boy say "that's gross" that you've really hit the big time. (that's not in this video, but it did happen)

head games

Noa loved this thing - and especially loved when we spun it really fast, but I'm including this clip because I managed to catch the moment in which Noa discovered that just by turning her head when she got to the topmost point on the cycle, she could keep this things turning all by herself. Again, a great moment in which Noa discovered that SHE had the power to make something fun happen all on her own!

Taking the Show on the Road

Okay, so this is the first of a number of videos and photos from Idaho. I may pop some more in later, but I want to get this section caught up so I can move on to present life back in NYC.

Later in this series you'll see a clip of Noa walking with Ben along Payette Lake - doing her school of funny walks routine and pulling on Ben's arm. We're always looking for ways to to get her to focus on walking with trying our arms off and this turned out to a great solution - pushing her own stroller. It makes for some slow hiking - so we'd walk for as long as Noa could manage along the road to Boulder Lake and then we'd put her back in the stroller and walk back to the car at our own pace (so we'd get to feel like we actually went on a walk too!) We were really impressed with how far Noa could go on her own - as you can see she is wearing her leg braces here which give her some more stability (though probably a bit less flexibility). Some times people wonder if it would be easier to walk without them because they're so heavy and cumbersome, but the advantage is that they make her more aware of her feet and legs and the need to really pick them up. When you don't really have an understanding of space, understanding your body in space take some extra effort. Of course there are advantages to lighter shoes and to going barefoot - so as you'll see in these videos - we're doing it all.