Friday, May 15, 2015

The Unfriendly Skies, Or Post-Traumatic Airlines Syndrome

Reading the comments on the New York Times online in response to the distressing story of United Airlines re-routing a plane to remove a family traveling with an autistic teen from a domestic flight has left me with post-traumatic airlines syndrome.

We've had our share of airline and airport meltdowns, and the comments on this Times article have left me with flashbacks of the judgmental comments and snide asides of people who seemed to only have experience in drive-by parenting.

My comment on the New York Times site isn't yet posted (they moderate their comments), but here's what I wrote (with links added to the fuller details on this blog):
As the parent of a 17-year-old on the autism spectrum, many of these comments break my heart. Our girl also has challenging food requirements; we have to carry food with us on almost all flights. We need to keep the food from spoiling, so we have tried to use ice packs. Try getting ice packs through a TSA check point. Have a go at that. 
One airline – which had promised us (a family of 3) seats together – decided, on the morning of the flight, that we could all sit separately. This took 45 tense minutes prior to the flight to almost solve. And this was after we had already arrived 3 hours early (at 4am) to ensure we'd get disability seating. We were all already exhausted before we even boarded.
We do as much as possible to plan ahead. Sometimes it's just not possible. 
But it is distressing to read all these comments second-guessing the mom:
  • Keep a hot meal ready at hand? Sure thing. 
  • Always speak with total courtesy to dismissive flight attendants. Check. 
  • Walk 1,000 miles rather than take a commercial flight. Got it. 
  • Call the airline ahead. Sometimes works, sometimes doesn't.
Stay home and lock your kid in a closet seems to be what you're recommending. That was fashionable in the 19th and early 20th centuries. Sorry, I'm just not down with that solution. 
Thankfully things have changed a little. But obviously not enough.
•  •  • 

Do I sound angry and snarky? I think I might. I'm sorry. Sometimes I am angry and snarky. Sometimes I'm not diplomatic. Sometimes I'm tired. Sometimes I wonder what happened to human kindness. Sometimes I find myself humming a Grateful Dead tune: "Oh, oh what I waaaannnt to know is are you kind?Seems an increasingly rare quality.

Be kind. Do better. Walk a mile. All that.

Monday, January 05, 2015

Hello Kitty Magic

We were looking for something special to do in LA that would give our girl a break from the challenges of Dementiaville (aka helping take care of grandma).

Of course our girl Sweet M would always go for Disneyland. But the Magic Kingdom with holiday crowds and a new and not-so-great disability access program didn't sound too magical to me.

Where would we find our magic? Turns out it was at the Japanese American National Museum in Little Tokyo where the current show is Hello! Exploring the Supercute World of Hello Kitty. Our girl was watching the evening news one night and heard about the exhibition, told me about it, and we got organized to go. I'm so glad we did.

Gown for Lady Gaga made from
Hello Kitty plush toys.
Sweet M was enchanted — she was in what I can only call an aesthetic rapture. Part way through the exhibition she was just exploding with joy: "It's just *so* beautiful!" she exclaimed. If an anesthetic is supposed to make you feel nothing, an aesthetic should make you feel something. And feeling she was: just thrilled at the scope and scale of the Hello! exhibition — at the massive, fantastic kawaii cuteness of it all.

As we turned the corner into the second to last room of the exhibition, slipping passed the gown for Lady Gaga made of Hello Kitty plush toys, I came upon signage that read:
One of Mr. Tsuji's* passions has always been products that foster "social communication." Thus the "hello" of Hello Kitty carries the meaning of reaching out in friendship. Sanrio's early goods focused on the means of communication— such as stationery, pens, and erasers — each with the cheery visage of Hello Kitty. . . . 
And then, on the very next wall:
For some Western critics, Hello Kitty's mouthlessness symbolized powerlessness.
But Japanese people understand things differently. They assume Hello Kitty's design to be an abstraction. A typical Japanese comment: "Hello Kitty has no mouth? I never noticed."
I had never noticed either, so it's not just a Japanese thing. No mouth! And social communication as the emphasis of the earliest product lines . . .  How perfect is it that the Kitty is one of the characters my communication-challenged girl loves most?

And the fact that there was a dress worn by Lady Gaga in the show made this outing even cool enough for her to talk about today, the first day back to school. As you may know from earlier posts here, finding a way to love what she loves and still be cool isn't the easiest thing for this seventeen-year-old Kitty fan. But Hello Kitty works some magic, making her developmentally atypical tastes a moment of cool.

Thank you Kitty-creator Mr. Shintaro Tsuji and exhibition curators Christine Yano and Jamie Rivadeneira! You've made one autie-Kitty-lover and her mom ever so happy.

* Mr. Tsuji is Hello Kitty's creator and the CEO of Sanrio that markets the Kitty's product line.

Sunday, January 04, 2015

Our Year of Barely Blogging

Actually it's more than a year that we've been barely blogging. When last I posted, dear readers -- if any of you are still out there reading — I promised so very much more than I could deliver.

I promised I'd write about how our girl's dad helped her increase her Regents* exam score by 22 points. I promised I'd write about her fledging friendship and her trip with her class to the Grand Tetons. I promised to write about our work doing neighborhood organizing. And I didn't do any of that. Nothing. Not a word.

I'd say that I let you down, except I probably didn't. You'd probably figured out long ago that I just wasn't going to be blogging much. You'd watched my blogging dwindle to one post a year over several years' time. There'd be the weeks, and then months, of dead air, with any new post an apologetic explanation of absence, like this one — sweeping leaves off a nearly abandoned site.

It wasn't just the time-consuming work of fighting the
construction that has stolen our sunshine
and disrupted our sleep.
Where did we go? It wasn't just the time-consuming work of the neighborhood organizing. Or the full time job. Or continuing the work of getting our girl through high school (she's a junior now). Or the visits to Dementiaville (aka LA) to take care of my 89-year-old mother. All that that might have been enough to induce this silence, but that wasn't it. It was other things. 

Or the flying back and forth to LA to deal with my
mother's declining memory and cognition.
There was (and is) the nagging feeling that things are different now that she's a teen. It's not just that she can read whatever I write — that's been the case for years now — but also the feeling that I want her to be telling her own story. You know the disability rights motto of "nothing about us without us." 

The goal is hearing the autistic person's story, not just the autistic's parent's story. I take that seriously. And she has started telling her story, with an Instagram account. But I don't know if I should link to it or not. There is her privacy. And besides, she has more than a hundred followers there anyway: other folks who love Pokemon, My Little Pony, and Hello Kitty. It seems also that there is a place for our voices — for parent and caregiver voices — even as we cultivate our girl's voice. 

And then there was (and is) the occupational hazard of over-thinking things. 

Some of the colleagues that I've been reading argue that the work we do of sharing on the internet is just a way of participating in communicative capitalism, or platform capitalism, or what other people have long called the spectacle. The argument goes like this: We write, post, share, click "like" and engage via social media that capture our attention and our affect — our love itself — and sell them to marketers. Every corner of our electronic lives helps someone turn a profit. The logic of these analyses is irrefutable: fortunes are being made off of our free content, off of our desire to connect, off of our desire to share.

But still, do we want to share less, live less,  love less, just because Google, or Facebook, or Twitter or Instagram or Tumblr executives are riding high on the profits they turn from our attention?  

I don't have an answer to that question just now, but I'll be working on it this year, writing here and elsewhere. I don't know if the gift economy of blogging has any chance of succeeding when the platforms are siphoning off so much at the top, but I'm going to see where the gift of writing with and about our girl takes me in the year ahead. If I pick up any momentum, I hope you'll come along for the ride. We may stall, or sputter, or just run out of steam. But let's see how far we get in the year ahead. 

*Regent Exams are the standardized tests that New York's kids have to take to get a high school diploma. 

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.

Sunday, August 18, 2013

Autism's Edges Visits the Lap of Luxury

photo credit:
We decamped from the New York City heat to visit with my family in Los Angeles. On our girl's list of things she wanted to do in LA were: Disneyland. A waterpark (preferably Six Flags). And Rodeo Drive. Yes, Rodeo Drive.

I'm not sure where she got the idea that Rodeo Drive was worth seeing – we've never been exactly a label-obsessed family (unless Hanna Andersson counts for baby clothes) – but she was seriously interested in seeing these four blocks in Beverly Hills. Disneyland in August heat wasn't going to happen. I soured on waterparks a few years ago after an unfortunate encounter with a waterslide. So Rodeo Drive was on.

Badgley Mischka Shop, Rodeo Drive
Our girl was thrilled, eager to see what ultralux commodities were there on display. The first store we checked out was Badgley Mischka, with their shimmering chiffon evening gowns. Sweet M was enthralled looking at them, gently touching the poof of ruffles on one gown, dazzled by the jewels on another. All was well until a haughty sales person came over any said, "Please don't touch the gowns – they're very delicate. You can just touch the hangers to move them." To my surprise, the saleswoman's attitude rolled right off our girl. I guess that's the beauty of missing nonverbal signals in social communication.

Sweet M just went about exploring everything, but no longer touched anything. I was less sanguine, and said, "You know, my daughter is on the autism spectrum, and she learns by looking and touching, but she's also very rule bound, so she won't be touching anything else here."  She looked at me, icily, and said, 'Well, that's good.'"

This did not bode well for our continued Rodeo Drive visit. Sweet M would be just fine, but I might experience some class-induced emotional dysregulation.

Happily, every other store was amazing and welcoming: Max Mara, the Porsche Design Store, Christian Dior, Tiffany, Chanel. The staff were warm and friendly, apparently accustomed to visits from tourists from the 99% and accommodating of an autie teen girl thrilled to visit what she called "the lap of luxury." It seemed the higher end the store, the more gracious the staff were.

On our way back to the car we walked by the Badgley Mischka shop and looked in the front door. Amazingly, our previously haughty retail staffer was clowning around with an African American colleague, holding up one of the very precious gowns in front of herself.

I wondered what it's like to be a retail salesperson on Rodeo Drive, catering to the rich and their personal assistants while, perhaps, passing along a bit of attitude when you can. Thankfully, our girl hadn't notice any attitude; she was thrilled with her day. She's much less fragile than any evening gown, and ever so much more dazzling. 

Wednesday, July 10, 2013

Modern Rites of Passage: Or Reflections on the Tyranny of Standardized Tests

Please review the illustration below and answer the question that follows. 

Question from New York State Regents Sample Earth Science Exam, January 24, 2013.

Now pretend that your future college and employment options depend on your ability to answer said question (and 84 others like it).

And while you're at it, pretend that you are 14- or 15-years-old. And that you have an autism spectrum disorder.  Or dyslexia.  Or haven't had breakfast.  Or your parents just divorced.  Or whatever else might be going on in the life of a 15-year-old. 

Can you answer the question?

I can't.  Even if I don't imagine all the other variables in this thought experiment, I can't answer the question correctly. 

In fact, I can't answer most of the questions on the 9th grade New York State Earth Science Regent's exam.*

Has that hampered my prospects in life? Perhaps. I'm not an astrophysicist. I'm not a geo-engineer. And I'm not a meteorologist.  I'm okay with that.  I'm a tenured university professor at a highly-respected university in New York City. I've won numerous federal grants. I'm the author of a well-received book in my field from a major university press. Most people who know me think of me as rather well-educated and knowledgeable.

Usually I wouldn't share this information about myself, but it seems relevant to these tests as some metric of educational attainment.

But if I were 15-years-old today, there is a good chance that I would not earn a high school diploma in New York State. Well, let me clarify that. I might earn what's called a "local diploma" in New York State. 

Anywhere else (as far as a I know) a high school diploma is a high school diploma. But in New York State we have an educational caste system where some kids earn a "Regents diploma," some earn what's called a "local diploma," and some earn an "IEP diploma." 

To earn a Regents diploma you have to earn at least 65 points on five Regents exams: English, Math, Global History, American History, and one science (either Earth Science or Biology). To earn a local diploma you have to have 55 or more on these four exams. Without that, you either don't graduate or, if you have an IEP, you can earn an IEP diploma. You can go to a private college with a local diploma, but you can't go to the New York State University (SUNY) system, the most affordable schools in the state.

Since last summer we have been working hard to see that our girl will pass the five Regents exams that are required for the Regents diploma. The first of these exams took place in June. A passing score is 65 or above. A "low pass" is 55-64. And below 55 is a non-passing score.

After a year of work toward passing these exams, our girl earned a 64. That is, she missed a regular passing score by one point. One point. 

She had a near perfect score on the lab section of the exam: 15/16.  She routinely earns A's and B+'s on in-class exams that cover the same material. Her teacher said this exam just had too much vocabulary for her.

I was thrilled for her that she had passed, even with a low pass. Her father is heartbroken and angry that she didn't earn at least 75 points since she does much better than that in her course work.

For two weeks after the exam scores were in, we spoke, and argued, and spoke, about almost nothing else: he wants her to study all summer with him and retake the exam in August. I want her to have a summer break, revel in having passed it (4 of the 39 students in her class did not earn even a low pass), and start to look a the vocabulary for the upcoming Biology and Global History exams.

I understand his position: he thinks that these exams and the information therein actually matter in life. He thinks it's a worthy goal to pass these exams with high scores. And he thinks letting her get by with a low pass is giving up on her and her future.

And I think these exams are unnecessary and damaging hurdles that destroy a natural love of learning and replace it with a desire to pass, to score, to win – and often, to cheat a system that is unfairly rigged against our kids. I think they contribute to the single most annoying question I get in every class I teach: "Will this be on the test?" I think these exams are destroying our kids' lives, turning them into test-taking machines. Having her study for these exams is, in my mind, nothing more than a necessary evil.

So we don't agree. We won't agree. We've agreed to disagree. We haven't decided what to do: whether she will retake the exam in August or not.

What I do know is that as a society we seem to love our educational standards more than we love our kids if we are willing to subject them to this adolescent rite of passage called standardized testing.

So-called primitive tribal societies would incise their young people's skin with magical markings and rub in ash to create the raised welts of scarification, or send them into the forest to fend for themselves to mark the passage to adulthood, reincorporating them into the group when they healed or returned from their quest.

Here in New York State we are somewhat more subtle. The scars we create are invisible: we mark our children's neural pathways with specialized technical knowledge that will likely be of no actual use to them, send them into the ordeal of testing arena, and then reincorporate them into a stratified society based, in part, on how well they perform this task.

We can opt out of this rite of passage, but what sort of future can we imagine for our girl if we do? That is the question we have pondered for the past three weeks. What do you think about high stakes exams for our kids, ASD and otherwise? What have you done about such tests?

* The answer for the exam question, if not to these bigger questions, is "D. White dwarf." You can look at this exam and any of the other archived Regents exams at: