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.

Can You Stand It?

We have a lot of great video from our trip, but this is probably my favorite. This the first time Noa has been in the Payette since she was an infant we were in McCall in August. Usually it's just too cold! But this year the water was lovely and Noa seemed to be very interested in the gentle lapping of the lake tide and the way it rocked her back and forth in the water, and as you can see here it is Noa who wants to let go and see if she can stand - which is really exciting. Of course the setting is glorious, you can't beat that - and Noa seems to sense that there is something special about Idaho: the breeze, the sounds, the openness of space, whatever it is that she experiences when we are there - she really seems to dig it.

Can't Get You Out of My Head

Ben actually had to take a quick jaunt to Austin during our time in McCall (more about that to come), and it was when he was away - and I still had to find a way to get some emails out - that I discovered that Noa LOVES hanging out at the Fogg Lifter (a great coffee/breakfast/lunch place that has internet!) Last year Noa couldn't sit still for 5 minutes in the Fogg Lifter - she was just bored out of her mind there. But this year we couldn't get her out of the place. In fact, one morning we went had breakfast at a friend's house and I think she spent the first half hour there just being pissed that she wasn't at Fogg Lifter! (I can get that way about coffee shops too)

This video is actually from that first successful visit. Noa is sitting at the kiddie table and you can see she is digging flipping through this book (which is not her book, but one of the pile of kids books they have there) and rocking back and forth to the music. This spot is also near a window - so there is a breeze - and she finds the sound of the esperesso machine endlessly fascinating as well.

The next day we sat at the table you see in the background - a full sized table - and Noa liked that even more. She liked it so much that more than once my poor computer would run out of juice before Noa was ready to go.

Aside from the fact that it was just nice to be able to be out in a public space with Noa and getting some time to send a few emails, being at the Fogg Lifter also meant Noa had to stand in line (something which she really needed to practice as patience is not her strong suit), and had to let me focus on things like getting out my wallet and paying for things. This seems like simple stuff, but it's really stuff that Noa doesn't get a lot of exposure to in NYC. We get our groceries delivered here - most markets are in basements so it's a pain to come and go with a wheelchair or stroller, and hard to manauever both a chair and a shopping cart in narrow aisles; even going to the drug store usually involves a wheelchair because it would take so long to walk there an back (even though it's around the corner), and then of course you have to carry whatever you buy and try to keep her from falling. Plus if she wigs out trying to wait in line, then you're kind of stuck in a bad situation because the lines are long and carrying her back home would be back-breaking... so Fogg Lifter was like training wheels for being out in public, and we needed that!

Return of the Clicky Lady!



Gold Forks Hot Springs



As many of you know, the lovely and talented Talya Arbisser has been photographing Noa for a number of years now - and capturing images that are not only artful and informative, but also really capture the spirit of Noa, so we were thrilled when she wanted to come out to Idaho for a weekend this year. 



We've always joked that Noa knows Talya that "clicky lady" because whenever she is around there is a lot of clicking.

Talya arrived just a few days after Ben and Noa arrived, and just as we were beginning to realize that we might be facing some bowel issues - but nonetheless we had a lot of fun with Talya in town and she took some amazing photos - some of which you can enjoy here.

There are some more on her FB page: http://www.facebook.com/?ref=tn_tnmn#!/PhotosByTalya.

Go there, check out the photos and hit the "like" button. I'm sure there will be more forthcoming - but she has a lot of material to sort through! You can also see more of her work at: http://photosbytalya.arbisser.com/

 If you go to Talya's page, check out "Seeing With Hands" which includes a bunch of her earlier photos of Noa.

Thanks Talya!!!!


Noa enjoys her tire swing!



Yard Sales are fun, especially when they have old office stuff!



McCall 2012

Well that was a vacation! 

Ben and Noa chillin' on the old glider in front of Moxie Java in McCall.

As always, I have a fantasy that I'll get around to posting from McCall, but as always that did not happen. We don't have internet at the house - which so we're dependent on trips into town and time at the coffee shop. Once Ben and I finished all our business emails, there wasn't time for much else: there were too many vacation things to do!

I'm posting a handful of photos and videos (in following posts) now, but will have to get them up over the course of few days. There is just too much stuff and too many stories!

Overall, we had a great time. Noa and Ben joined me in Idaho (I'd been there a month already for Seven Devils) after Noa's school year finished up and we spent a wonderful few weeks chillin' in beautiful McCall. We stayed pretty close to home on this trip - and unfortunately (why not start with the unfortunately and get it out of the way) spent way too much time having to focus on Noa and her bowels. McCall is at 5,000 feet; it's dry and when it's hot it's even more dry and little Miss Noa arrived in McCall and promptly decided she did not like the water. This makes for two problems - dehydration (which we solved with a diet of unthickened stage 2 baby food) and constipation (which was the most troublesome issue.





Chillin' at Bistro45 by the Bacci Courts



This yard sale find turned out to be the perfect tub.



Noa enjoys windows down driving!



Noa went over a week without any... well, you can guess and if you can't guess then congrats because who wants to think of such things. Finally we tried an enema which had only limited success and laxatives which seemed to produce no results at all. A day later (4th of July) another enema. We were sure with the addition of the laxatives (and the inspiration of Indepedence Day) that we'd get some results... but no.

Finally we ended up seeing a doctor at the clinic in McCall (there were no apts available for weeks, but if we called at 8am there were a limited number of "same day" apts - so Ben and I took to our cell phones at 8am like we were calling in to a radio station to win concert tickets and managed to get one of the coveted spots). The doctor's theory was that the... blockage... was further up in her system and she gave us a recipe for change that included a double dose of ex-lax AND Miralx twice a day! This worked, but we were amazed that it actually took a couple of days to have effect.

Along the way we finally convinced Noa she should drink some Pediasure and would literally celebrate anytime she had more than three sips in a day. I should also note that in addition to not drinking liquids, Noa's immobility is another part of the issue. Walking and moving gets things... moving. I spent A LOT of time rocking Noa and trying to tease her into different positions, especially bending and twisting moves, just to get things moving.

In addition to Noa just being uncomfortable sometimes, and a bit out of sorts, it was a drag because I'd been hoping to use a big chunk of our Idaho time to working on feeding therapy. Much to our disappointment, the school has decided to stop Noa's feeding therapy because she's not making any progress figuring out how to chew (or wanting to figure it out). She is self feeding, and so they feel they've been successful with that (they have), but don't think they can make more progress with the texture/chewing issue. Since we had to keep the food very watery I wasn't able to work on this much.

BUT as you can see, Noa still had a great time (and so did we) overall. She took it all very well, really and we still did lots of biking and swimming and walking and hanging out playing and driving the windows down. Noa loves being in Idaho - but more of that in posts to come. Just figured I'd get that part of the story out of the way first. And the good news is that Noa got back to drinking once we got back to NYC. Hey, NYC has got great water.

Enjoy the videos below - more to come soon soon!

Noa sitting on her wee-hoo bike trailer - attached to the yard sale bike Ben got (I got one too)!

Independent Girl!

In the next video (below) you'll see what happens when Noa walks holding one (or both) of our hands; i.e., she tries to pull them off! Noa doesn't love to use the walker when she is with us - and even if she did, McCall really isn't set up for people with walkers - so we're always looking for creative ways to get her walking more independently and this one has been successful: she puts her hands in our pockets (she can do this with one person, as she is doing in this video, or with one hand in each of our pockets if the three of us are walking together). She is much more stable like this - when she is holding our hands she just seems to sink down and drag her feet along and pull on us, but walking like this she really has to do more work and actually seems to like it better. We would get a lot of funny looks down at the beach doing this. For the mostl part grown ups understood that she couldn't walk and Noa got some nice, encouraging comments from friendly strangers (she really seemed to like that a lot!) Kids just starred and wondered and sometimes asked if she was really a "little kid" - since she couldn't walk.

A Walk on the Wild Side...

This is one of my favorite videos from our time in Idaho. Not only is it a nice long clip of Noa walking happily (the funny noise she is making is her version of "kisses") it also demonstrates how she really pulls hard on our arms sometimes - something that is hard to really get a sense of in still photos. Sure, she looks small enough next to Ben but she's a serious 40+ sack o' potatoes! You can also see a bit of what we fondly refer to as Noa Sahl's school of funny walks which seems to be about experimenting with the best way to control those pesky legs. She tends to want to move from the core - which involves ramping up a lot of momentum to keep throwing those legs forward, but that nearly always ends with the legs just getting ahead of her (or tangled up with each other) and then a rather dramatic plunge (to the ground or into us). Walking slowly forces her to use her leg muscles, which is what we want her to do, they just aren't as strong yet and she doesn't have as much control over them yet. If you look at her legs you can see that they don't have much definition. But walking in the sand is a good work-out and I think by the end of the stay I was starting to see a bit of calf muscle developing.