Thursday, November 01, 2012

Autism's Edges Meets Rivers Edges

We lasted almost three days in our cold, dark apartment.  No electricity, of course.  No heat, a surprise.  And no cell phone service.

But last night, after a cold grey day, as the gloaming began, we all started to lose it.  Our girl began crying -- I want the power back, I want the power back.  I felt like crying, but bucked up.  Then I decided we had to leave -- get to a hotel.  Get somewhere warm, dry, safe, with lights, and electricity, and internet service.

There's something about the in-between spaces.  Between the river and the land.  Between the day and the night. Here, the river's edge, twelve hours before the storm landed.

We have a back-up phone -- an old copper wire non-electric phone (at heart I am a secret survivalist) -- so last evening, on the edge between day and night, I called a hotel.

And today we are at the hotel. We hope we can stay until the power comes back.  We might not have a room for the whole time.  Because of the Marathon.  Don't ask this New Yorker what she thinks about diverting resources to the Marathon during a period of devastation.

Everyone here seems to be storm refugee. The stories are heartbreaking,  I am sitting in the lobby writing this -- the wifi in the room doesn't work because of all the troubles, and our girl is on the ethernet, catching up on her YouTube programs.

Our last few days involved . . .

Boiling water for bathing and heating the apartment.  Works for the former, not for the latter.

Reading lots of books.

And painting. Both our girl and I were painting.

We have come to know what it means to be on edge. Really at the edges.

We've taken up art therapy at Autism's Edges.


audball said...

I was thinking of you and your sweet M the other cousin and his family live near Langone and could see the evacuation. They were without power and I think still are :( …

But glad to hear that you are all okay and surviving. It's so hard when our kiddos are off their routine. It takes my girl a *lot* of effort to deal with the unknown. Hats off to your M for being brave and lasting as long as she has (and you too!). Hopefully, you all will be home soon - we're thinking of you!

MothersVox said...

Thanks Audball! We got home on Saturday and spent the next day cleaning out the frig and settling back in and trying to catch up on a week of email from people who seemed to have been unaffected by the storm. I hope your cousin gets his power back soon. It is really cold today, and expected to be colder still tomorrow.

The Langone and Bellevue evacuations were terrifying. There are almost no hospitals left downtown with them closed. The fragility of our infrastructure has never been so painfully apparent.

But glad to be home, catching up, and checking in!

Anonymous said...

Here in Staten Island there are real, we ain't kidding problems, not just ASD but ALL vulnerable people, not just kids but also adults, people living at home, people in IRAs, people in nursing homes (did you know the Mayor specifically exempted nursing homes and hospitals from evacuation? that is far, far worse than the marathon idiocy). During Irene we got to check out evac centers - no ramps, e.g.; no options for people who cannot handle the environment of echoing gymnasiums with tiled walls full of very stressed out people... We need, we MUST, set up and nurture neighborhood connections so people can know each other and efectively help each other. You were fortunate that you were able to avail yourself of a hotel - when my son burned our house down we COULD NOT go to a hotel: it kicked off an unremitting meltdown. We ended up camping in the backyard while reconstruction was done...

MothersVox said...

Dear Anonymous,

I am so very sorry to hear about your troubles when you lost your house, and, of course about the incredible hardships being faced by people on Staten Island in the past week and tonight.

Our troubles downtown pale by comparison, I know. Still, I have committed myself on this blog to telling the truth of our experience, not sugar coating or lemons-to-lemonaiding it as our happy talk culture would have us all do.

The information you shared about the Bloomberg administration's orders exempting nursing homes and hospitals from evacuation is stunning. I didn't know that. But it goes a long way toward explaining the late, after-the-fact flood evacuations that we saw at Bellevue and NYU-Langone.

Has anyone in the media covered this story (the decision to exempt, not the Bellevue & Langone evacs)? I haven't seen anything on it.

I agree about the need for neighborhood connections, and then I also know that as a special needs parent, having time for building spaces for sociability in the offline world is one of the biggest challenges for my family. There are space, time, and monetary issues. Spaces of community are difficult to come by for autism families -- it's part of the whole range of problems particular to social and communciation disabilities. But you don't need me to tell you that!

Sending you all my best for a swift recovery from this storm, and for the support that you deserve to make your family's life that much easier.

Anonymous said...

Thanks from Staten Island... here's from Huff Post re evacs:

One thing I've learned, parenting extra-ordinary children (Dx's T10/11 paraplegia, NT; Downs, ASD/Sezures & other alphabetic stuff...) is that it is our job as parents to create reality for our guys - and, by extension, make the world a safer place for humanity over all. I've spent two decades+ pushing the envelope: for a while I ran the only inclusionary Girl Scout group on SI (group because of the age-span), coached swimming, spoken at churches - all that good old suburban "bowling league" type of connectedness. And yes, I work. And yes, it's damn hard to get people to turn out, find space (actually, the biggest hurdle is usually insurance!) I've found pretty much ANY house of worship is a good place to start: no one will dare give a mother with spec. needs people too much grief - and with artful application of guilt you can accomplish a lot.

Your downtown, right? My oldest was a student at PS 234 when it first opened - most of the students at that time were spill-overs from PS 1 in Chinatown, so they were running Head Start, which is another great opportunity for connections if you have a younger child (I think the program runs through 3rd grade now, with Super-Start Plus). If that's not running at PS 234 anymore (the demographic has changed significantly since then!) try PS 1. Good luck right back at you!

MothersVox said...

Thanks for sending that HuffPo piece. Oye.

It's so funny that you mentioned congregations. I have been thinking about that, but am rather non-religious after a Catholic girlhood that didn't treat me well. :)

Bud I'll think about that. Thinking about the Unitarians and the Judson Church in the Village. Haven't been able to muster up the energy for it, but will meditate on it.

I am downtown. We dreamt of going to PS 234, but it wasn't right for our girl. But now she's in high school, so it's a different ball game.

Loved your line about the artful application of guilt! That's so observant of you. It's tricky because claiming the victim subject position can backfire -- making your kid feel like a burden -- but overall these various rhetorical and affective positions are all important to use judiciously!

So glad you stopped by here. Really grateful for your insight and observations.