Look At Me Go!!!

Okay - now for some news that is good and totally NOT strike related!

Thanks to the folks at school, Noa was able to see a wonderful doctor to access the issues with her legs and feet. Noa had been having some cramping issues - which have happened in the past during growth spurts - but these were pretty dramatic and there was a fear that it was impeding her progress we'd made with walking. The folks at school were wondering is botox (yes, botox) might help.

This wasn't the first time I'd hear about this, it deactivates the nerve that sends the message to tighten the muscle (so it kinda makes sense). A lot of kids also get tendons in their leg actually snipped to relax the legs. I'd hoped to avoid these things, and with massaging Noa was been mostly okay - but frankly, seeing the discomfort she was in it seemed like it was time to entertain more aggressive options.

The doctor was really wonderful and I felt very comfortable with her assessment. She wants to do the Botox but can't do it until May - so until then she wanted to put Noa on a muscle relaxant which we started about two weeks ago. The shift was pretty much instantaneous. The photo here is a bit misleading in that Noa isn't totally walking on her own - she really needs the two walls - but dang that's a big difference! It actually means that she has to work a bit harder to keep control of her legs. But she pretty quickly realized that things like jumping, for example, are much easier when your knees are soft.

Also in the bonus category, we found this great kids pharmacy that was not only able to make the medication into a liquid, it also was able to make is any flavor! (we picked chocolate), so it's not a struggle to get her to take it.

Strike Fun (?)

So just catching up on a few items from our adventures during the strike -

We did have one "snow" day during the strike. Noa has rather famously disliked snow forever. It's cold and it's just... everywhere! But we keep trying to convince her that's fun. The only thing Noa seems to like about snow is sledding. When were were at Grammy and Grampy's it's was great because they have hills. Unfortunately for us (and by "us" I mean Ben) we just have a long flat garden - and so Ben, like a pack mule, pulled Noa back and forth in a sled we borrowed from another kid. Noa still hated the snow and as soon as it was clear that Daddy was finished pulling her around she was ready to go in.

Other fun during the strike - my MLK heart scare turned into a series of appointments and the discovery of my seriously high cholesterol levels and a realization that I had to do a better job of taking care of myself overall (as soon as the heart stuff was resolved, I got shingles - I think my body is sending me a message).

But health aside, the BIG lesson for us from the strike is what a delicate house of cards we've constructed to make our lives work. Years and years of near constant battles with the Board of Ed, with Medicaid, keeping ourselves in sitters and therapists and doctors, getting wheelchairs, leg braces, standers, walkers, bikes, canes, fighting for ASL, researching CVI; all of it so carefully set in place with each piece stacked one upon the next, but it only takes one missing school bus to blow it all apart. It gave us a lot to think about, and it was a pretty harsh reminder of what happens when there is a hole in the social safety net.

I will admit that it left me feeling rather disappointed that during an era full of "occupies" of every variety nobody could be rallied to action (or even to remember the plight of) so many kids like Noa who were kept home and missed not only school but medical and therapy apts, and their parents (some of whom lost their jobs during the strike). I did try a couple of time to rally some energy - I put out missives to the "occupy" community - nothing. I would look at my window overlooking First Avenue - just packed with cars - and wonder over and over how it could be that we can't get these kids to school.

Getting back on a regular school schedule has been a bit of a challenge. Noa got used to getting up later, and there wasn't really an urgency about missing the car service - but the bus, it doesn't wait around like that! So morning have been a bit of a challenge. And - as happens with any disruption - there is a bit of a backslide. Mainly it's just that having so many new people around allows Noa to get more bossy; she gets used to people who don't totally understand her so she figures out how bend them to her will. Smarty. But we're slowly but surely getting back on track. It's been quick a winter. Let's try not to do this again!

Long Time....

Wow, I can't believe how long it's been since my last post! So much to report, but let's start with Noa's most recent appearance on NBC - our post-strike interview:
http://www.nbcnewyork.com/news/local/School-Bus-Strike-NYC-Union-Meeting-191437101.html

Throughout the strike, I kept in touch with Pei-Sze Cheng, who interviewed us for the first piece we did on the eve of the strike, so it was fitting that I found out about the end of the strike when she called to tell me that she'd heard the drivers would announce an end to the strike that evening and asked if I want to make a comment. I told her this was the first I'd heard of it and she said "well, then I guess I am bringing the news." Funny! As you'll see, Pei-Sze actually didn't do this interview, but it's a nice piece and Noa really got to be the star in this one (though if you understand ASL you'll see her signing "poop" quite a lot. She'd just gotten off the potty, but I like to think of it as her own commentary on the whole affair).

In terms of the money we put out, we still are waiting for some of that to be re-paid. We were recently told that the City decided it would only pay back $200/day; which I told them wasn't going to work for us since they never told us ahead of time of any limit, and actually there is no way to get a wheelchair car to and from Westchester every day for less then that (if they wanted it to cost less they should have provided it). ANYWAY, they now say that was a "mistake" and that they'll pay us the rest. We'll see. As I repeatedly told the woman who called me, they'll pay us. They can do it now, or they can do later after a big pain the butt, but they'll pay us.

Of course the really funny thing is that after this interview, the folks at NBC made sure to let us know that if the City did give us any trouble, they'd like to know about it... so maybe another spot in the future if they don't pony up. They also haven't given us any answer about reimbursing the cost of having someone take Noa to school on days when we couldn't. So, the strike is over but remnants of it still linger like a strange after taste.

Also, props to Ben - during the interview he tried his darnedest to get out a message about where parents could go for help getting reimbursement, but NBC didn't include that in the spot. The thing you really learn is that you're there to play a role - as soon as they left I told Ben my "Christmas Miracle" comment would make it and I was right. That's the part of the narrative I was there to fill. And though they wanted to know if we had trouble getting money from the City, actually providing information to help parents get that money was not a part of the narrative for this story. Not a complaint really - because I'm grateful for the opportunity to get the story out at all - just an observation.

In any case - it's over for now. The drivers say the strike is "suspended" not "over" - but I think that depends on what the next mayor does. They realized they would get nowhere on this, and the "agreement" with the Democratic candidates was mostly a face-saving move that allowed them to go back to work without feeling like the thing was for naught.

Now We Are 8!

A bit late - Noa actually turned 8 on the 9th, but things have been so crazy!!! It's not just the continuing school bus strike, though that is a huge part of it. We were very bummed that we were unable to throw Noa a party this year. She loves parties - but it was not to be. Maybe when all this is over. We did have a couple of mini-parties: visits from favored friends (like Melissa who brought the stickers) and new friends like Jean Andzulis and her daughter Co-co and Findlay who really made Noa's day by responding to her bossy demands for more stickers.

The silver lining in all this has been a few new additions to Team Noa (most significantly Joy Lynn and Jenny), and the opportunity to revisit some we haven't seen in a while. It really has been a team effort; sometimes including a tag team of 3-4 sitters plus me and Ben to get through the day. Overall, Noa has handled it quite well - and why not? We're all at her command. She misses school when she can't go and will repeat "skoool skoool skoool" if she's been a days out. But for me and for Ben it's as difficult a stretch as we've ever experienced.

Usually I try to keep this blog to things directly relating to Noa, but in light of that last amazing statement I'm going to veer slightly off track here. Considering all we've been through (everything with Noa, plus my MS and Breast Cancer) can it really be that this is the most difficult stretch??? Yeah. I think so.

Without going into all the gory, tedious details - we have to reserve and pre-pay for a wheelchair car service every day ($114/each way). The City will reimburse us but we have to fill out weekly forms and get them in on time - of course 4 weeks in we have yet to see a cent of reimbursement. They have a voucher program, but for those in wheelchairs, frankly it just would take forever to call all of the services to find one with an accessible van that will actually take the voucher (they don't all really take it when you call).

If Ben and I can't go, then we sent Noa with a sitter - which is really great and we certainly can't complain about that because we're so grateful that she can get there. But that tacks another $100-plus to the cost (because the sitter is then up there all day), and although we're going to try to recoup that money from the City, we have no guarantee that they'll pay up (they are supposed to provide a matron for transportation). SO everyday that Noa goes to school we're fronting around $350 BUCKS! She hasn't done a full 5 days since this started, but even if she just does three days over $1000/wk - and there is no end in sight for this strike because the side are not talking and not planning on talking.

Then there was the process of having to find and interview all these new sitters - since most of the folks already on the team didn't have day times available at all. The amount of time I spend finding, interviewing and training sitters and getting cars in place, and filling in forms and badgering the Board of Ed for relief is crazy. Every day is a whole new battle.

Add to all this, Noa's been having issues with leg cramps so we've been trying to get that taken care of - connecting all her various doctors to all get on board with some muscle relaxants to help her out until May when we can get in to see a specialist for injections to help keep her legs and feet from totally twisting inward and impeding her ability to walk without pain.

Oh, and the Cobra insurance Ben and I have been on runs out in April, and some other stuff with the Bd of Ed that I'm not even going to go into yet AND I'm scheduled to go to San Francisco next week for work. I'd bag it, but we need the dough to pay for all the sitters - though I know it will be stressful week for Ben being home all alone.

Speaking of stress - as many of you know, all this stress and anxiety sent me to the hospital on MLK Day with chest pains (at least we hope that's what it was). Since then I've been exhausted as hell. I wasn't having a heart attack, but still need some tests to make sure there is nothing else going on but I've continued to have the chest discomfort and exhaustion. I have a battery of tests with a cardiologist on Thursday, so wish me luck on that.

I could go on, but why? The point is - it's been a very stressful month. The Land of Noa is a beautiful place, but it takes a lot to keep it going!!!

Noa Takes on the NYC Bus Strike!

Okay, so the NYC School Bus Strike - what a debacle!

The one bright spot in it all is that the piece with did with NBC/4 New York turned out so well -

http://www.nbcnewyork.com/news/local/School-Bus-Strike-NYC-Disabled-Special-Needs-187030171.html

I haven't figured out how to directly insert the video - something to figure out with all my spare time. Ha! There is a lot to cover here so I'm going to try to break it up into bite-sized pieces:

HOW WE ENDED UP ON NBC NEWS
After watching two or three reports on the news about how the strike would affect people I got kind of annoyed. I saw Manhattan parents who would have to take a bus with their kids and get to work late, I saw families in Brooklyn that had to carpool - and not to say that's not going to create total chaos in their lives, but fully 1/3 of the students affected by this are special needs kids for whom the solutions provided by the City were impractical or totally worthless. Why wasn't the news covering that?

So, in my usual disgruntled way, I went to their website and shot off a quick email outlining my situation and wondering why they didn't cover something like that. Within 5 minutes I had 3 different emails back from NBC asking me if they could do an interview. Amazing.

So, below is our situation, after that some interesting developments today -
I was going to do a bit about the strike itself, but too complicated and I have to do some other stuff during this work time. But you can Google if you like. It's extremely complicated - and part of the question is if the two sides can even negotiate with each other at all... and the truth is, not really (point for the City) but if this going to end then they'd better start figuring out how to talk about the problems (point for the drivers).

OUR SITUATION
Noa takes a bus to school in Westchester everyday. The drive up can be 45 minutes on a good day or an hour and a half (or more) on a really bad day - or if there is an accident (which is pretty much everyday somewhere along her route). When the buses went strike, the City offered free Metro Cards (useless, we can't get there on public transportation); reimbursement for taxis (not realistic on so many levels I can't even begin) or reimbursement for a car service - the only choice we can consider BUT...

- Getting a wheelchair car service is tight even on a good day, with nearly 60,000 disabled kids looking to get to school there just aren't enough of them! We're lucky, Noa has good trunk control and her chair doesn't contain features (like communications devices) that make it urgent to use her chair - and the school offered to lend us one they had here. SO we can get a regular car.

- But because Noa is so young, she cannot take a car service herself, so either Ben or I has to go with her. Once we're up here, going back to the City just doesn't make sense since we'll only get in 2 or 3 hours at work before we'd have to get back into another car and go out to pick her up. So whoever takes her out has to stay. This is somewhat workable - until I start to teach in a little over a week - because I can't show up an hour late to teach a two hour class!

- BUT not taking her to school is also problematic - because I still can't go to work unless I can find someone to watch her, or Ben can spell me, which is what we did yesterday when we both had appointments that we couldn't miss.

- Another problem - THE COST - although the City says it will reimburse, you have to fill out weekly forms and who knows how quickly they'll pay you back and the cost ONE WAY for this trip today (including tolls) was over $90!! That Ben and I can afford to do this at all probably puts us in the minority - and I certainly don't think we'd be willing to do it more than a few days a week until we had a sense of when we'd get reimbursed!

INTERESTING DEVELOPMENTS TODAY
In my continuing my stream of disgruntled emails, I sent an email to the Office of Transportation - I explained them the situation and also made clear how much it would cost the City to do this Car Service thing for us. They won't reimburse a rental car - which would cost far less (though if you have a car you can get gas reimbursed). Much to my surprise I heard back!

They called this morning and wondered if it might work to see if we could get together some other families coming up here into one wheelchair van service - with parents taking turns as bus matrons. I said heck yes - I'd do that once a week if I could still teach the other days! Of course they can't be me other parent info, or the routes - nor can the school - but I said I'd help in any way I could.

Then she says she'll need to figure out who to talk to at the school - I was at the school of course, so I just put the right two people on the phone right there! We'll see if it works out. It was funny listening from my end. The side I could here was MB saying, "How many of parent? All of them! I can't think of anyone who wouldn't want - none of our kids are here. They all need it!"

The school has 90 students. Yesterday they only had about 20 (it was also a partial day due to snow) and they were all inpatients at the hospital. Today that have 39 - mostly the addition of local students whose parents could drive them - and crazy me. I think I'm the only Manhattan parent who made it.

MY DAY TODAY
I'm grateful to the school for letting me set up here and get some work done. It's really more work than I'd have gotten done at home while trying to take care of Noa at the same time. I'm just kind of stuck up here is all. The car service was great - except for being about 1/2 late - and we'll see how the trip home goes. I'll probably do this tomorrow because I know I can't do it next Tuesday because of a meeting so should just do it when I can. 

Welcome 2013

So here I am, sitting in the Parents' Office at Noa's school - working remotely thanks to the NYC School Bus Strike, but more on that in a bit - I'm going to try to do with in order.

I wanted to share a couple of videos before I get into all that -

First, this great video of Noa pushing the grocery cart home from the fabulous new Fairway Market that just opened around the corner. We've been trying to take Noa on walks that involve stuff that Mommy and Daddy have to do - which any regular kid would have to put up with - but just walking that far with Noa is a trial - much less trying to walk through a store and - yikes! - waiting in line. But genius Daddy had a great idea, which was to bring a rolly cart with us so Noa could try pushing it (and we could carry groceries home, because once you have Noa with you your hands are totally full!). Noa enjoys pushing her wheelchair or stroller sometimes, and she loved pushing the grocery cart - so it was a great discovery!!

It was great because it truly saved Ben and I coming home sore and/or in pain from having our arms pulled on constantly. I will admit that trying to shop was a bit difficult - it really took both of us: one of us to work with Noa so that the other could actually look at the shelves - she's not steady enough to stand on her own and can really throw herself around dramatically when she's impatient. We didn't want to cause a gigantic clean-up in aisle 1, 2, 3, etc...! And of course, trying to get through a NYC Fairway is plenty challenging without a blind child pushing a rolling cart.

The only challenge was the check out. Noa didn't like standing still while the groceries were getting scanned - though we were lucky to get a good cashier who kept telling her what a good job she was doing. And once we had some bags she could help us put into the cart, she was much better. 

I suspect Noa will be making more trips to the market with us now. That was a great success for everyone!

The other video is actually from Christmas - a composition Noa played at Grammy and Grampy's but it's like many she is working on now at home. It was at my folks that I realized that one of the reasons Noa wasn't playing as much was because we set her piano up at the stander. So now we set it up so she can sit and play at home again which she much prefers.

The video is a bit long, if you cut to the end there's a nice finish. If you watch for a bit you can see that she's making sounds verbally - her way of singing - but also just some sound effects that are fun. It's fun little clip.

2012 Wrap Up!

There are - without a doubt - some huge gaps in the blog this year, but I hope these photos from Christmas in DC with my family at least give 2012 in the Land of Noa a landing place. I can't believe I haven't posted since Sandy but the truth is we've spent most of the past few months just trying to get up to speed again (you wouldn't think you could get that far behind after just one week without electricity!)

Noa had a tremendous year and one of the things I think you can really see in these photos is how social she is now. Thanks to her work with Yvette, who is fluent in ASL, Noa's communication skills have really soared. The more she signs, the more she also speaks - which is kind of an interesting development. It seems like the words gain meaning once she has a sign for them. She'll try to repeat almost anything, and though Ben and I myself may be the only ones who understand most of what she says; she has a number of spoken words now:
'otty (potty)
and-up (stand up)
gove (glove)
unch (lunch)
keke (sleepy)
oggie (doggie)
ch-ch (chicken)
soool (school)
share (chair)
ouch (couch)
onkey (monkey)
There are others, but I think that gives you an idea. And sign? I've given up on keeping a book for them, they're just too many now! She can count to ten forwards and backwards, the alphabet continues to be a favorite and food words: chicken, peas, potato, spinach, corn, orange, apple, broccoli, etc.

And - in case that wasn't enough - she's starting to work on her Braille. We have flashcards and she likes them - though we're still very early in that process. 

Christmas was great for Noa this year. She loves spending time with family and friends - especially Grammy and Grampy. The day that we left for DC Ben asked Noa if she wanted to wake up: No. Did she want to have a bath? No. Did she want to have lunch? No. Sit with Mommy? No. Play with blocks? No. Go to Grammy and Grampy's? And-up! And-up! And-up! (see above for translation)

For the first time, Noa was able to really sit at the table with everyone and eat like a big girl (a big girl eating mush, but a big girl nonetheless.) No toys or books or demands for doggie at the table, just eating or - as in the photo below - the tickle from Daddy. She was also really big on hugging everyone with was a so great! It's hard to describe how great it is to get a big hug from a kid who for 7 years - though she loves you enormously - never reached out to hug before. It's one of those small things that you don't even know you were missing until you get it, and then you realize it's huge.

Another big highlight: going on walks - instead of being walked around! Here we are on a walk with Noa's cousin Abby. Still a bit of pulling on Mommy going on in this - but still, it's a walk!

The holidays including a bunch of great toys. She loves puzzles and shapes and we got more of those. We also got some toys to promote dramatic play - like the American Girl Doll below (she got that from someone who donated it to her school - wow!) and a dollhouse. Transitioning to more of this kind of play is one of our goals for the New Year, it's a slow transition. We actually got the doll about a week before Christmas and we just started off with putting her to bed at time (giving her a stuffed animal and tucking her in), and waking her up in the morning (putting on her shoes and brushing her hair for 10 seconds) - at first she didn't like it so much but eventually she'd put up with it (and than promptly grab Dolly by the hair or foot and throw her... you know, like you do with friends). But by the time we got down to DC she was doing much better and as you can see now allows Dolly to sit and read Ferdinand with her at night and will even hug her before putting her to bed.

So it's been a banner year for Noa. And I think she's quite ready for 2013. She's been saying "Soool" over and over for the past day or so and this morning insisted on putting on her school pants... vacation is okay but I think she's ready to keep moving forward!

Happy New Year and Much Love to You All!!