Monday, April 21, 2014

Our Home at Autism's Edges

There's no doubt that we've been mighty silent over here at Autism's Edges. We've reported nothing, and missed most of our friends in the autism world. Some noticed and checked in, and we let them know privately what was going on. Then last month MamaGenius reached out on Twitter and asked where we'd gone:

We've been fighting a massive luxury condo development in our formerly quiet neighborhood. And the work of this has taken almost all the waking hours that haven't gone to teaching.

It started in November 2012 when we learned about the planned development, and has consumed us for the past year. Our girl has stepped up to help—postering the neighborhood, writing to Mayor DeBlasio, lobbying our neighbors on Christmas Day 2012 with cookies she baked and a petition to sign. I could not be more proud of her and of my neighborhood. We have all worked very, very hard to stop the assault on our neighborhood. Sadly, we are not winning.

When we went into the fight, we knew it would be tough, and that the chances of winning were slim.  The Bloomberg administration was gung-ho on development—especially of the luxury condos that now sit empty across the city while veterans and families and the mentally ill sleep in the streets, in the subways, and even under the scaffolding where the condos are being built. And Mayor DeBlasio seems to be following in his path, taxing empty lots to encourage development on every vacant lot in the city.

Construction of 16-story building
next to our home
So why go into a fight that you're not likely to win? The smart money in this fight was on the developer and the fancy charity that sold them their air rights in a real estate boondoggle. But smart or not, we went into this fight. Thinking about it now, I can only say that we did it because we love our neighborhood.

This is our home and our lives are as shaped by this place as they are by genetics or culture or anything else. This is where we conceived our girl and lived through morning sickness and preeclampsia. This is where we brought her home from the hospital on a freezing November day, a fragile bundle of blue and pink dreams. This is where we watched her grow, through hip dysplasia and colic and sleepless nights.

This is where she had her first birthday, and the sixteen birthdays that have followed. This is where I finished my dissertation and wrote my first book while she learned to crawl and to walk and to run. This is where she went to the local nursery school (soon also to be luxury condos). And this is where the seasoned preschool teacher named Donna told us something wasn't quite right. This is where we received the report, on the week between Christmas and New Year's Day 2001, that told us that something was wrong and that sent me to my computer to search (not yet in Google, but in Altavista and Yahoo) for the terms "perseveration" and "echolailia."

This is where we watched from the roof on that terrible day when the planes flew into the towers and the people tumbled from the sky and the buildings scattered in a hail of dust. This is where she grew terrified of dogs and finally outgrew that terror. This is the place where she's had a Christmas tree each year, and Easter baskets in the spring, and where she learned, in the end, that Santa is a myth. This is where she got her myriad diagnoses and outgrew so many of them. This is where the early intervention folk attempted their interventions of speech therapy and ABA. This is where she came home every night after a long day at school. This is where she learned to read, to draw, and to play.

It is so much, and it is so little, this place we call our home. It is just a small apartment on a formerly quiet, tree-lined street across from a playground where our girl grew up—but it has contained and shaped the narrative of our lives.

When our girl wrote to then Mayor-Elect DeBlasio to ask him for his help in stopping the development that will steal the sunlight from the playround, this is part of what she said about what is happening to our home: Where I live and where my neighborhood lives isn't just a part of the city. It's a part of our happiness that will be taken away forever. 
 
From our girl's letter to then Mayor-Elect DeBlasio. He never answered.
And so we love this place in a way that isn't rational. We love this place because it has been the place that has shaped our lives. And we had hoped, in some small way, to shape it as well: to cherish it, to keep it safe from the assault of the developers. We wanted our girl to know that she can join with her neighbors for something she believes in and make a difference. We couldn't bear for her to fall prey to the cynicism and apathy that our oligarchy breeds. But alas, she may yet, because surely they are winning.

The battle may not yet be completely over, but we're pulling back and regrouping. And so we find ourselves back home, back at Autism's Edges. And there are nearly a year of adventures I've yet to report on. I'll have to fill you in on how our girl went from scoring a 64 on her Regent's Earth Science exam to scoring an 86. Yes, a 22 point gain in just three weeks of studying! And I'll tell you about her first walks around the neighborhood on her own, even as we both held our breath at home. And the week-long trip she took to the Grand Tetons with her classmates. And the most recent development: her first pal, a girl with whom she shares a passion for Pokémon and Barnes and Noble bookstores.

This is still our home. We have not moved on just yet. We don't want to move, and we're not quite sure we'll be able to stay in the shadow of the tower that will take away our sky and our sunlight. But stay or go, wherever we are, we know that we'll always be living at Autism's Edges. I hope you'll stay with us as we find our way through this the year ahead. Thanks for your patience during our great silence.

8 comments:

D Marcotte said...

I am so sorry to hear about your difficulties - I hope that you are able to prevail. Good Luck

VMGillen said...

Greetings from Staten Island... we face the same issues in my immediate, North Shore neighborhood - except the developer has delusions of suburbia. A 9.5 freshwater wetland, on a highly polluted floodplain, will have about 90 two-family houses. We've been fighting tooth and nail for more than a decade. We've lost... AND we also have the Bayonne Bridge roadway-raising going on. This is such an assault! At least, in Manhattan, you get someone to listen - here, the neighborhood is predominately undocumented Spanish-speakers - viewed as a throw-away demographic.

BTW, noise must be controlled under NYC rules and regs. You can get apps to measure noise levels, and call 311 when you get readings over 90 decibels. Interesting: fetal exposure, to noise, and exposure up to adolescence, leads to disabilities symptomatic with autism... the brain is wired to tune out the noise.

audball said...

I was so happy to see your post and hear about your family. But I am also saddened to learn about your neighborhood development. Seems like your gal has embraced activism, which is wonderful. Glad to hear that she has a friend and has been making so much other progress as well. Our thoughts are with you and your family. I hope things turn out well in the end.

Anonymous said...

Delurking to say it's good to see you back, and disappointing to hear a first-person report that de Blasio is continuing down Bloomberg's path. As an ex-pat NYer now in Ohio, I had such hopes when he was elected! I hardly recognize my birthplace these days when I go back, it's turning into something else that lacks everything that makes New York, New York.

I think it's in the Talmud that "your job isn't to finish the work but neither are you free to ignore it." Well, you have certainly not ignored it, I hope that is some comfort.

Jennifer Hughes said...

The Sensory Spectrum is hosting a special blog hop of posts from bloggers in June and we'd love to have you participate! Just imagine a list of bloggers sharing their stories about what it’s like to have sensory kiddos! Read more here: http://www.thesensoryspectrum.com/sensory-bloggers-blog-hop-information/

Joining in on this blog hop will undoubtedly get your blog more exposure as people will hop from one blog to the next to read the stories. I will also be tweeting everyone's stories during the month and highlighting some on my Facebook page.

I hope you'll join us!
Jennifer @ The Sensory Spectrum
(and you can find me @ The Jenny Evolution, too!)

MothersVox said...

Thanks Jenny. I may just join you in the series because we just had a big reminder about our girl's unusual sensory processing! Thanks for the invitation!

MothersVox said...

Hi D Marcotte, VM Gillen, and Anonymous,

Thanks to all of you for the words of encouragement.

VMGillen, I think I saw a story on the evening news about your neighborhood. I'm so sorry - I know that when it's a state or city project they even get more latitude with nighttime and weekend work. That has to stop. City Council Member Rosie Mendez is working on legislation to limit after hours variances. After the budget gets passed (which is what they work on in June) then this legislation moves into full swing. You should lobby your council member about it. It should help a bit!

And Anon, thanks for de-lurking and also for the Talmudic wisdom . . . which for many reasons I needed today! It is will interesting to see how DeBlasio's affordable housing plan will work . . . if he can pull that off, I'll forgive him for not answering my girl's email. ;-)

The other thing that has been amazing is that our new city councilmember's office has been extraordinarily responsive. There is good work happening in Corey Johnson's office.

I think there will be change . . . there already is . . . though it seems to be too late for my neighborhood.

mv.

MothersVox said...

Audball! So great hearing from you! I will be blogging more this coming month. I have missed my autism world blogging and I have so much I need to think about with my girl that it will be a joy to be back here with all of you more regularly! mv.