Moving Ahead in 2012

It's been quiet over here at Autism's Edges. At the blog, that is. In our lives it has been a bit noisier than usual this past three months because of our relative proximity to Zuccotti Park. It's about 12 blocks to the south, so we're between the former occupation site and other useful sites for protest: Washington Square Park, New York University, the New School, and Union Square.

October 8, 2011: Our girl checks out the mounted
police horses staging at La Guardia.  The story of what
the mounties did when she tried to feed the horse will be
saved for another day. (File under "over-reaction.")

Often, even now as I type, NYPD helicopters hover overhead to track the movements of the Occupiers. Sometimes the drone starts early in the morning, sometimes it continues into the wee hours of the morning, and sometimes it extends from morning to night, as happened last night when the occupiers returned to Zuccotti Park. When I fell asleep at four I could still hear the sounds of sirens and helicopters.

Two weekends back, on the day we were setting up our Christmas tree, the lot two blocks away, owned by the Episcopalian church, was the site of an action. A former bishop was arrested climbing over a fence to lead the occupiers to land — an open lot, a potential commons – that he and countless others argue a Christian church should share rather than enclose behind eight foot fences.

Sometimes we hear some commotion outside and look out the bedroom window to see protesters running down Sixth Avenue against the traffic and police mounted on their motorcycles weaving between cars to pursuit, trying to head them off, corral them.

This fall has been a tumultuous one in our small corner of the world, close, as it is, to the epicenter of the captains of commerce and consciousness. Our friends who live uptown are surprised when we tell them about these eruptions of civil disobedience and police actions. Apparently uptown there is no disturbance.

November 17, 2011: View from our window -- the
Occupiers marching south, the traffic stopped. And the
empty lots that may reshape our view.

Our girl takes it in stride. She is disposed to favor the Occupation.  The fact that they are reading about the Gilded Age and the rise of the Progressive movement in her history class also helps. But her response to seeing protesters marching down Sixth Avenue blocking the traffic was simple, some might say "rule bound": they shouldn't so that – they are blocking traffic.

We have not entertained any higher order discussion of the role of civil disobedience in political change or the intuition of the framers of the Constitution that democracy requires that citizens be ever vigilant of an overreaching government.  We're simpler than that at Autism's Edges.

What we have done is think about moving. I think about it nearly every day. We have lived here, in this apartment, for more than twenty years. Our lives are installed here – with built-in bookshelves and loft beds and handmade counters that her father lovingly created back in the days when he had a studio. (Or as my favorite West Village folk singers put it more lyrically: back before the airplanes came and took the buildings down.) Tearing away from this place feels as though it will be almost as heartbreaking as those days were, with their smoke and dust and airborne sorrow.

We'd be leaving the neighbors that we run into on the sidewalks from time to time and compare notes about our kids.  We'd no longer live across the park from the place where our girl learned to walk.  We'd leave behind the sights of our past: the Children's Aid Nursery school building where a seasoned teacher first told us that she ought to be evaluated for language delays (we wouldn't have known as it was all so subtle and we were oh-so-very-clueless). And leave behind the corner green market where the Kim's know us and ask about our girl when she's not in tow. We'd leave behind the short walk to the Hudson River where we gave our girl's first goldfish, Sparky, a solemn burial at sea one frozen winter afternoon.

Leaving here, this place we have loved, feels as though it will be less like pulling up roots – the typical metaphor for a move of this sort – than like pulling off a scab: we have grown into the wonderous-ness and wounded-ness of this place that is downtown and the place has grown into our own cuts and scrapes.

Still, I am feeling that it may be time to move. The vacant lots next to our building – the ones just outside our living room and bedroom windows – were sold last year to a development company from Texas.  They paid $17 million dollars, so I'm guessing they have the money to build the fifteen story building that local zoning would allow. When they build, our only view of sky, trees, and avenue will be gone, as will all of our natural light.  I can see this coming, I just don't know quite how long we have until they break ground and the rumble of helicopters and motorcycles policing the occupation will become the background for din of construction.

So as 2011 comes to a close and 2012 unfolds, I wonder where we will be next year, not in some metaphorical sense, but concretely. Will we still live here, or will we have found a way to move?  How can it happen so that our lives can grow beyond this place where our girl has grown-up?  I don't know. I'm asking you all to keep us in your thoughts and in your prayers (if you do that sort of thing).  And on your autodial if you hear of an affordable 2-3 bedroom (that allows for the pet she wants) somewhere between here and the northern border of the city.

My new year's resolution this year: to love this neighborhood every single day we get to keep living here and find a place we can love as much where she can continue to thrive.

It's a Famiracle (In Three Parts)

I. Last week I was in California for a conference and one afternoon I called home to check-in with our girl and her dad. I was planning on staying in California for an extra day, so I told our girl that I would be seeing her grandmother, and also possibly her two uncles. "Great," she said, "Tell them I said hi, would you?" I almost dropped the phone in shock. Although this would be an ordinary conversation for a neurotypical family, it was extraordinary for us.

II. Right after I got back from my professional conference, there was another conference, of the parent-teacher variety, the first of the semester. We view these events with a great deal of trepidation. Typically we are told that our girl is too this or too that, or not enough this and not enough that. But this year was different. Because our girl is an eighth grader, she is invited to the conference. It's a parent-teacher-student conference.

Perhaps because she was there ("nothing about us without us") the conference took an entirely different turn. We learned that our girl scored highest of any student on their history exam and is the most sought-after study partner for history because her notes are the most complete. Everyone wants to study with our girl. And she's having no problem managing her anxiety from the bell or the passing period. The only thing they'd like to see her work on is talking with other kids at lunchtime (which she still doesn't do).

Instead of discussing our girl as a bundle of pathologies and deficiencies and sites for remediation, we were talking about her strengths.  A conference that included her required that everyone present focus on her assets and progress. We had a hard time hailing a cab to get home because we were all floating about ten feet above street level.

Wall Street Occupation during October 29th snowstorm.

Photo: David Shankbone, CC license, use with attribution.

III. This morning the sweet girl and I were talking about the unusually early snowstorm, and she brought up the impact of the weather on the Wall Street occupiers.

"You know," she said, "Some of them have gotten hypothermia."

"Really?" I asked, "How'd you know that?"

"Read it on the iPad news app."

"Yes," I said, "the police took away their heaters and generators."

"Why'd they do that?"

"Because they want them to leave."

"Why do they want them to leave?"

"Because the people in the government want them to go away, but other people want them to stay, so they brought them blankets and tents and warm clothes."

"It's a famiracle," she said with glee.

"What's a famiracle?

"It's a combination of something that's fantastic and a miracle."

"Where'd you hear that?"

"I made it up."

"Wow, that's great," I said.

"It could also be a wonmiracle."

"What's a wonmiracle?"

"Something wonderful and a miracle."

•  •  •

I have to pause to take in the developments of the last week:

• Thinking of others, and letting them know you're thinking of them.
• Academic achievement, and sharing your skills with others.
• Reading the news on your own, concern over the well-being of others, and word play.

This, from the girl who was said to be incapable of thinking of others.
This, from the girl whom we were told would not learn to read.

It is fantastic. It is wonderful. It is a famiracle. And a wonmiracle, too.

Wall Street Occupier during October 29th snowstorm.

Photo: David Shankbone, CC license, use with attribution

Autism's Edges Visits Occupy Wall Street

Our girl hard at work at Occupy Wall Street.

After what appeared to be the arrest of a 13-year-old girl by the NYPD yesterday as she crossed the Brooklyn Bridge as part of the Occupy Wall Street-99% Movement, my own 13-year-old girl and I decided that we couldn't just stand by doing nothing. So this morning we headed down to Liberty Square to see what democracy looks like.

What we saw were families, teachers, healthcare worker, police officers, students, journalists, and lots of other people just like you and I.  What we saw were people tired of living in fear of foreclosure, in fear of losing health insurance, in fear of losing jobs, in fear of losing educational services, in fear of what the future holds for their kids.

As we walked past the New York Stock Exchange I tried to explain to our girl what the protest was about: that the reason money has been so tight for the past three years is that some people essentially made off with our money and our nation's wealth through a combination of speculation and warmongering.  I didn't get into the impact that all of this has been having on special education services, or on eldercare, or on bus services. I kept it simple: some people have been stealing our money.

It didn't seem to exactly make sense to her.  As we made our way down Wall Street she requested that we stop talking about it: too much language.  But when we arrived at the Occupy Wall Street encampment she enthusiastically joined in painting protests signs and captured her thoughts about plutocracy in a most straightforward analysis.

At Autism's Edges, we are part of the 99%.

An American (School) Girl: The Autism Edition

One of the worst things about eighth grade for our girl is the ringing of the bells between periods. Every time the alarm sounds, it jangles her keenly sensitive auditory neural pathways, and sets off a cascade of neurotransmitters to generate a flood of adrenaline. Instead of shrugging and heading from class to class, she races through the hallways as though pursued by a saber tooth tiger or a pack of wolves (not to mention the threat of detention for tardiness). When she hears a bell she'll plough right through any obstacle — inanimate or animate — to ensure that she's on time to her next class.

The excruciating (for our girl) sound of the school bell is, according to educator Cathy N. Davidson, one of the many remnants of an educational infrastructure designed to create the compliant and synchronized industrial workforce needed to populate the factories and offices of 20th century America. The bells, the desks in rows, the proscenium stage set of chalkboard with teachers at lecterns, the out-of-date textbooks, the separate vocational and college tracks, and the standardized multiple choice tests (the results of which can shape the course of a life) are the educational dead weight of the industrial age that could keep our country from realizing the genius needed to succeed in the current century and the future it holds.

Twice in the past month I've had the pleasure of hearing Davidson talk about her new book, Now You See It: How the Science of Attention Will Transform the Way We Live, Work and Learn, which takes up these and other problems (and possibilities) created by the disjunction between our neurobiology and the structures of our schools and workplaces. Along the way, Davidson's research on neuroscience has led her to consider the anomalies found among kids like ours.

In a particularly evocative section of Now You See It, Davidson writes about the fate of children with Williams Syndrome across cultural contexts. In the United States, where happiness and effusiveness are considered virtues, the ebullient and embracing nature of Williams Syndrome kids make them more lovable and socially acceptable.  However in the context of Japan, where a reserved demeanor is valued, Williams Syndrome children are more likely to be institutionalized — possibly because of their (perceived) rude and intrusive behavior.

Reading this passage had me thinking about the social deficits that our girl has. She's on the other end of the emotional continuum from the Williams Syndrome kids. Our sweet girl is by no means warm and cuddly. She rarely engages in the back and forth of tween girlhood. She's not what anyone who'd just met her would call friendly or welcoming. Smiling is just not a default facial expression for her. In short, she lacks those social skills that are so highly rewarded in the "how to win friends and influence people" American context. Her reserved nature would be a problem for any kid, but it's especially a problem for a girl. While good cheer and an affable nature are valued in middle class American boys and men, they are all but required among the girls and women of this group.

Our girl's social reticence is a very real phenomenon, but it is the social requirement of female friendliness that transforms her particular affect from a simple fact to a significant handicap. 

As our girl shoves her way through the hallway to get to class on time she is not just frantic and rude, she's also unladylike, ungracious, and simply less lovable. She's violating the social norms of her nation, as well as for her gender and her class. I am painfully aware of how she seems to others -- remote, rude, awkward, pushy.

Sometimes I wonder if things would be better for our girl in Tokyo, home of the Pokémon and Yu-Gi-Oh she loves. There she would be strange, but her strangeness would be chalked up to being a foreigner, to being gaijin as I once was. Sometimes she even asks when we can go to Tokyo, or what it was like when I lived there. I'd like to tell her that it was strange and wonderful — a lot like she is. But instead I tell her about coffee shops that serve pasta topped with mashed potatoes and gravy or sushi bars that make sashimi so fresh it's still quivering on your plate. Our girl recoils in horror at the thought of either, and in that moment I know that however much of a neurological foreigner she may be, in so many other ways she's still an American girl.

Now there is only the small task of making over an America in which she can thrive, and, in the meantime, an eighth grade class where she can more than survive. 

Swag: Or the Genius in Things

"Stressed? It's going to take more than
a squishy ball. Right?" from
www.supportforspecialneeds.com.

Two weeks back I was finally getting around to storing the things from the BlogHer swag bags I'd hauled home from San Diego. The electric orange stress balls from Support for Special Needs were on top of the swag bags just as our girl was getting her backpack ready for school. Without much thought, I tossed one to her and asked if she'd like to take one to school to make the first day easier. Sure, she'd said, and tucked it into her backpack.

When I'd picked up the three stress balls after the special needs mini-conference at BlogHer 2011, I hadn't been thinking of anything in particular. To tell you the truth, I don't really understand stress balls, probably because my anxiety doesn't come out in fidgeting. But I so loved the humor that Support for Special Needs had squeezed onto them ("Stressed? It's going to take more than a squishy ball. Right?") that I'd taken enough for juggling.

Not surprisingly, our girl's first day back to school was stressful for her and for us. Nothing new in that. It's pretty much the same every year: even though her school is lovely, even though she knows all the kids, even though she has just a short bus ride to get there, and even though her teachers are loving and kind, she still cried, in her words, "all day." She cried the second day and third day and much of the first two weeks. She tells us that she cried because everyone talks too much and there is too much noise. But this year she commented that she squished the squishy ball and that helped, too.

Her principal and teachers reported that she'd cried just a little, not all day and much less than last year, but that she'd kept the stress ball with her everywhere and it seemed to work so well for her.  They were obviously pleased. Squishing a stress ball is okay. Crumbling up paper and grinding pencils into desk tops is not preferred. Something in the tone of their reports seemed to be congratulating us on thinking of sending it in, but actually it was a happy accident: the coincidence of unpacking a swag bag that contained a little bit of the genuis of www.supportforspecialneeds.com and packing up a backpack for the first day of school.  We had our "no ideas but in things" start to the school year, thanks to Support for Special Needs. Now we only have to find more things that work for our girl so that she's not in tears every September.

I think we're going to need an awfully big educational reform swag bag to hold everything we need.

Autism and Airlines: How Can Airlines Make Travel Easier?

Now that we're done getting ready for the impending arrival of Hurricane Irene, I'm catching up some blogging that didn't happen this week. We had to lay in some provisions – bottled water, some food, flash lights, sheet plastic and gaffer's tape. And we had to move our garden off the fire escape.  And we had to recharge everything that has batteries. And now I guess we're about as set as we can be and I can get back to things that were meant to happen Thursday, including blogging about the rest of our experience with Virgin America.

You might have read about our awful experience with Virgin America last week.  Once we were back in New York their customer service department contacted us, expressed their apologies, and credited us for the cost of our flight.

But they did something even more important than that.

They asked us how their airline could make traveling for people on the spectrum and their families easier.

I said that I had my own ideas, but that the spectrum is broad and that we should hear from adults on the spectrum as well as parents.  So I said I would post their question to the autism and nuerodiversity community.

What would you like airlines to do to make your travel with them easier?

Please post your comments and @virginamerica will use your suggestions in upcoming employee training.  Thanks, everyone.