In Praise of "And"

My mother is dying.  She's dying the long death of being 90 and having been the recipient of many of the interventions that our modern medical-industrial complex afford us. She (or rather, her doctors) outfoxed lung cancer in 1983. Last month mom and the medical folks cheated death again when the hospital where she'd been admitted found a way to treat her antibiotic-resistant pneumonia. She's back home, on oxygen, continuing her long trajectory toward the inevitable transition to death.

Meanwhile, our girl is blossoming into young adulthood – young womanhood – of the non-neurotypical persuasion.

On spring break she went shopping for a prom dress. She's determined to go and has been practicing her dance moves. She's been accepted to four of the six colleges she applied for, and offered scholarhips at each of them. It's easy to think of this as success — it sure looks like it.

Like so many high school seniors, NT and not, she is in the throes of trying to divine which offer to take, or whether to take a gap/bridge year to grow a bit more in her social and emotional dimensions, to breathe a little after the long uphill march that was K-12, to relax into the fullness of life before taking on the next challenge of navigating college.

And yet she is still autistic — or rather she has a great many of the characteristics that our culture associates with a label we call autism. We believe that she will always be, by our culture's practices of naming, autistic.  She still has all of the challenges that made K-12 so difficult, and that will most likely continue to affect her in her post-secondary life, be it a gap year, or college, or work beyond these.

So I am also establishing her now, unequivocally, as a person with a disability. That means applying, at last, for SSI. Establishing Medicaid for her. And inviting a whole new array of acronyms into our vocabulary. Where once there was the alphabet soup of PDD-NOS, ASD, OCD, ODD, ABA, and RDI, now there is OPWDD and ACCES-VR, and certainly more to come.

And where we had always looked almost exclusively at her potential and workarounds and accommodations, now we are conceding that there are undeniable and persistent limitations for our girl.

Her affect is flat. It is hard for her to do the smiling required by neurotypicals, and that is especially expected of females. She is often, quite frankly, what most observers would call rude. She longs to be fashionable, but wears a self-selected, sensory-friendly uniform of stretchy yoga pants and ultra-soft t-shirts. Hearing in any setting remains challenging, and in noisy settings it is deeply frustrating. Sudden loud noises still evoke a startle response. Her amygdala still works overtime despite the psycho-pharmology Western medicine has to offer.

So while we are celebrating her enormous accomplishments we are ready to concede that there are many things that are not likely to change, that are not likely to get easier for her, and that are, in all probability, not going away.

When I wrote here about the challenges of applying for SSI awhile back, I heard from some of my most beloved readers dismay that I would be doing this when she was such a success story.  And when I posted on my Facebook account about our girl's college acceptances, I had hundreds of messages of congratulations.  It may be the most popular FB post I'd ever written.

And so the question emerged: Why would anyone need SSI when they're a "success" story?

And that's the problem with narratives: most language pushes us out of the messy ambiguity that is life among the living into tidy categories of the fixed, of the orderly, of the conclusion. Our stories can push us to make ourselves and others into tales of this or that: of  success/failure, of neurodiversity advocate or curebie, of autistic or NT, and so on.  If we are this (succeeding in school with substantial supports) how can we possibly be that (in need of SSI and of other accommodations)?

So I find myself advocating for "and" — that single conjunction in English that makes space for it all — for this and for that. For the fullness of being rather than the sharp relief of this or that.

Paradoxically this praise of "and" also requires an embrace of this or that. Otherwise we'd be leaving out one of the most important tools we have: differentiation. Like most people I know, I relish categories and certainty. I sometimes like labels and the shorthand of diagnoses. They can be useful in so many ways.

But my girl's trajectory has taught me one thing for sure: one can never really know what something is, only how something looks and feels right now, in its own singular context, in this own particular moment which slips away into another moment faster than you can blink. The comfort of this or that, for all its usefulness, can be a trap that forestalls possibility. This and that has been the gateway to our girl's successes and to her failures, to her possibilities and to her limitations.

But it doesn't look like
she's dying, does it?

And on the other side of the continent, back out in California, my mother is dying the slow death of dementia. And I guess you know what I'm going to say now: that's she's also living the slow death of dementia.

This version of living is not the life of independence and freedom and privacy that we so love in North American culture. It's not our culture's vision of the good life (or even of the good death). It's a life that has pronounced and visible limits: the tether of the tube to the oxygen tank, the presence of caregivers in what was once her own private domain of home, a routine of medications to slow the progression of brain degeneration and calm her anxiety about the rapid diminution of her functioning.

The trouble for me, and for my family — and especially for my mother and my daughter as they are leaving and blossoming, each in their own ways — is this peculiar North American idea of success. Fantasies of independence, capacity, and individual freedom as these very measures of success damn our lived and shared experience; devalue our communities, connections, and interdependence; and thus displace so much of our full, robust, challenging, and rewarding lives.

The spaces of "and" are not easy to find and occupy, but I look for them wherever and whenever I can. I hope you'll continue to join me there, and here, at Autism's Edges as we move along through time and the stories we tell about theses times.

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. 

• Pony up for first class at $1000+ per seat. Whatever you say. Will do that right after our health insurance reimburses us for the therapy we have to fight about every month or agrees to cover the medication our daughter needs for her gastrointestinal issues. 

• 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.

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:

SOCIAL COMMUNICATION 

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.

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. 

No Normal Blue Light Bulbs Could Be Found

I went to the hardware store around the corner from the playground to buy a blue light bulb.

It's April, so it's autism awareness month. Even though we're more an autism acceptance family than an autism awareness family, I figured I'd get with the program and light something up blue.

I was hoping for one of those old-fashioned, normal looking light bulbs.

But they didn't have any of those. Instead, they had this extraordinary twisty blue coil. Not even our autism awareness light bulbs are normal around here.

When I got it home, I said to the sweet girl's dad, "Look, I got a blue light bulb for autism awareness month."

"What's a blue light bulb going to do for us?" he asked.

He's got a point there.

A month or so ago a group of autistic people petitioned Google to change their search completion algorithm. Seems that the auto-complete function of a search for "autistic people should" came up with these as the most frequent searches:

When I saw this online – it came to me through my Google news feed on the topic "autism" – I was destroyed. And I was angry. And I was puzzled.

I wondered how anyone – let alone the majority of people doing Google searches – could think this way about my dear girl. About my friends' dear sons. About all of our kids and our friends who are on the spectrum.

Who are these people that think that 2% of the population should be exterminated?  Who are these people typing hate into the syntax of the internet that my girl loves?  I guess we won't know who they are, but we do know they were the majority of folks searching this phrase that month.

Google changed its algorithm – it no longer reflects the majority view. Rather it aims to shape the majority view. This is what it generates today:

And I got a blue light bulb – an energy efficient one, at that.

I don't know what it's going to do for us. I don't know what Google's altered algorithm will do for us either. But it's a start.

Growing Up with Autism: Life Transitions, Part 2

Note: This is the second of three posts reporting on the Weill Cornell Autism Research Project (WCARP) Autism Symposium 2012 held at Weill Cornel Medical College in New York City on Friday, May 11, 2012.

•   •   •

Anxiety animates autism spectrum disorders, both for autistic persons, and for their familes. For parents of kids on the spectrum a great deal of anxiety revolves around a single question: Who will take care of my beloved autistic child (or children) after I'm gone?  

Dr. Linda Meyer, the Executive Director of Autism New Jersey, raised this wakes-you-up-in-the-middle-of-the-night question when she presented during the second panel of the Weill Cornell Autism Research Project (WCARP) Autism Symposium earlier this month.

Meyer: Facing the unpredictability of the ASD
developmental trajectory.

Answers to this question are often complicated by the unpredictable developmental trajectories of kids on spectrum.  Meyer cited research that notes that about 47% of children who presented with autism resolved into some sort of passing version of normalcy, while the others, more than half, showed little or no improvement.

At the heart of the problem for the parents of autistic individuals is a model (some would say "fantasy") of individuality that imagines that we are all self-sufficient and will grow up into an adulthood where we'll make it "on our own" and even make it well enough on our own (albeit typically with a partner) to reproduce others who can make it "own their own."

To a great extent the American fantasy of individualism and its companion (paired romantic happiness) haunts those of us with kids who may or may not "make it after all."

"advocacy as anxiety's antidote": Organizations like Autism New Jersey work to mitigate this flawed version of adulthood by advocating for adults on the spectrum, for their families, and for others who care for them.  Meyer cited the work of COSAC (Center for Outreach and Services for the Autism Community) in their 2006 report "Meeting the Needs of Adults with Autism: A Blueprint for the Future"and the more recent National Autism Center's "National Standards Report" as part of the critically-important planning and advocacy work that may help to pave the way to services for enormous cohort of autistic children who will grow into adulthood in the coming years.

Advocacy work of this kind helps me sleep a little better at night, but what if your child (or you, as an adult on the spectrum) are at risk of losing an autism diagnosis as the American Psychiatric Association revamps their Diagnostic and Statistical Manual?  Fears of diagnostic exclusion have animated discussions of the DSM-5 since the New York Times reported on this earlier this year.

Lord: When ASD is seen as an array of symptoms

Dr. Catherine Lord, who serves on the DSM-5 Committee on Neurodevelopmental Disorders (the group that is re-writing the diagnostic criteria for autism), attempted to allay such concerns with a presentation that articulated the goals for the DSM revision.

"anxiety about access": First on Lord's list of goals in the revision was "do not change who is included."  Although one could almost feel a wave of relief spread through the packed auditorium of conference attendees, there was a more troubling item further down in Lord's list: "make sure that the [diagnostic] criteria do describe ASD and don't describe people who do not have ASD."

And there's the pinch: having an ASD diagnosis is, like most psychiatric diagnoses, as much a function of social norms as it is of any objective features or characteristics of an individual. Describing something as a disease or a disorder is a matter of social convention.

Take, for example, homosexuality. For quite some time (specifically in the middle of the 20th century) being sexually attracted to persons of the same sex was considered a mental illness. But in 1974, in response to the gay rights movement, homosexuality was stripped of its status as a disease (though it lingered on in another diagnostic category -- "sexual orientation disturbance" -- all the way through 1987). But today, "curing homosexuality" has gone out of fashion among all but a few fringe practitioners of conversion therapy, and the APA currently considers such therapy unethical.

Conversely, consider the case of Abraham Lincoln, whose dark moods and brooding affect lent him the gravitas to lead the nation through the grief-stricken days of the Civil War. Some people argue that Lincoln would have no chance of being elected today since he would qualify for a diagnosis of major depressive disorder. In our positive-thinking, pursuit-of-happiness contemporary culture, anything beyond the most fleeting sadness has become a pathology. Indeed, other DSM revisions currently under consideration include shortening the length of the normal period of bereavement (over the loss of a life partner!) to as little as two months.

Unlike gay activists, who were delighted to lose the stigma of mental illness, autistic individuals and their families often need to maintain their diagnoses because, at least for the moment, access to support services and medications that alleviate some of the challenges of coping in a neurotypical world depend on such a classification.

In fact, access to services for autistic individuals (for example, insurance coverage) has increased over the past decade because of the work of activists and advocates.  In the days when my girl was receiving her first diagnoses, a PDD-NOS diagnosis would have hindered her access to pharmacological therapies, hence her psychiatrist's care to provide an array of diagnoses that would facilitate treatment that I mentioned in the first part of this series.

Lord and the DSM-5 team recognize that
care needs to be taken to not exclude people
from access to services

Diagnoses shift across time as social norms change. And those social norms are shaped, in large measure, by the institutional decisions of powerful, if well-intentioned, groups of professionals.

I don't envy Dr. Lord and the DSM-5 committee the task of revising the volume's developmental disorders section. It's a sobering prospect to imagine that your decisions could cut or eliminate vital services for thousands of individuals who are currently diagnosed with autism. But short of grandfathering in everyone who currently has a ASD diagnosis (which would expose the vagaries of the construction of these categories), it is hard to imagine how enough care can be taken that no one loses their diagnosis.

Lord's presentation made clear that the committee working on the revisions of the DSM-5 has heard the concerns of the autism community. How, or to what extent, they can respond to these concerns remains to be seen, but her arguments for revisions to the diagnosis were elegant and eloquent:

• currently autism diagnoses vary depending on the place where the individual is evaluated, which should not happen with functioning framework. 

• changes in the presentation of autism since the DSM-IV was devised have been so dramatic that the new framework must account for many more referrals of: 1) toddlers and two-year-olds (due to better early identification), 2) older and younger children without intellectual disabilities, and 3) adolescents and adults with other psychiatric co-morbidities. 

• increased early intervention and the accompanying positive results make autism a far more mutable condition than it has previously been, and finally, 

• there has been (and needs to be) greater attention to the special issues of girls and women on the spectrum. 

These changes, Lord argued, make the process of accurate diagnosis more complicated, and more important, than ever. The diagnostic framework for autism, she asserted, ought to be robust enough to be useful for all ages, all development levels, any gender, and "all degrees of severity where there is impairment."

Lord: Deficits and capacities inside the spectrum

All of this makes sense, though there are lingering concerns.  For example, what if requiring repetitive behavior as one of the two primary symptoms of autism (a proposal being considered by the DSM-5 team) eliminated a whole swath of people from the ASD classification? They might well be pushed off into a newly minted diagnosis, Social Communication Disorder. Thus just as advocates for folks on the spectrum have achieved the hard-won fight for insurance coverage, some may be rolled off into this new diagnostic category for which no coverage is mandated.

Recognizing how very much is at stake in the entire enterprise of revamping the DSM may be a first step toward advocating for accommodations and services that are not based on a deficit model that requires psychiatric categories for access to assistance. Instead, in a more just and equitable world, support and assistance would be based on the shared social goal of developing the greatest capacity for each and everyone of us, on the spectrum or not.

I know it has an utopian ring to it, but in that world the parents of kids on the autism spectrum could sleep more soundly each and every night.

•   •   •

This is the second of three posts reporting on the WCARP Autism Symposium 2012.  Check back in the next day or two for more on the clinical panel and a report on the breakout group that looked at services for adolescents.  

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.

Virgin America: No Accommodations for Autism Families

Virgin America: No accommodations for ASD teen.

Over the past months I've done quite a lot of traveling for work, much of it on what was my new favorite (until today) airline: Virgin America.  I'd had such great experiences that I was excited to introduce the girl and her dad to the cool purple-tinted interiors, funny flight instruction videos, and back of seat tv-entertainment centers on our flight back to New York.

When I saw that we weren't going to be able to get seat assignments together on the online booking, I called Virgin America and explained that we'd be traveling with a teenager with an autism spectrum disorder and asked if they'd be able to provide the typical disability seating that other airlines have provided for her — seated near the front so as to have most limited stimulus and contact with other passengers, and, of course, seated with us.  I was assured that this would be no problem, as long as we got to the airport two hours early. So I booked the flight.

We got to the airport two hours early — at 5:40 am — and checked at the ticket counter, as I'd been told to do.  She looked at our boarding passes for three separate seats scattered throughout the cabin and said she couldn't help us, but that customer service on the other side of security would definitely be able to help us.

After we made it through the long line for security, we got to the customer service desk, where we were told that we would not be able to have seats together. When I objected, they said, well, they'd try to get us seats together, but there were no guarantees. When I said that we needed disabilities seating with reduced contact with other passengers, the guy at the counter looked at me like I was out of my mind. Our girl's dad even had a typed note with this information that he'd handed to the customer service agent who handed it back as though he couldn't read or, or more likely, just didn't care.

After three phone calls to customer service, they somehow managed to find two seats together, so that the girl and her dad could sit side by side.  My seat was elsewhere.  Customer service kept insisting that we were seated together even though we weren't -- we were in entirely different rows, at the back of the plane, where our girl would have maximum contact with passengers coming and going from the lavatory.

Though one never wishes for one's kid to have a meltdown — the toll is just too high on them — there are those times when one wishes that you could give clueless airline agents just a little taste of the disaster that they are courting by not taking an autism spectrum disability seriously. By blowing off a request for reasonable accommodation (that they had already assured us would be available before we booked the flight).  By acting like we were making this all up so that we could have cooler seats.  Yeah, right.  I've decided to get my kid a life-long neurological disorder so I can get preferential seating on airplanes.

I wonder why it is that we get better disability accommodations on every other airline we've ever flown, even on frumpy old American Airlines. All I can figure is that Virgin America is just too cool to make reasonable accommodations. After all, having disabilities is just so not fashionable.  Or maybe it's that they're really not Virgin America, and therefore are not acquainted with the Americans with Disabilities Act. It's pretty hard to figure this one out.

But so much for putting the fun back in air travel.  As far as this family is concerned, Virgin America is a big old able-ist FAIL.

An Octopus's Garden By the Sea

Sea Life Aquarium, Carlsbad, California

This summer we were meant to go to a water park. I'd cut a deal with the dear girl: if she attended a couple of computer animation workshops she could go to a water park. Water parks are her idea of summer heaven. I'm much less enthusiastic, especially after the wrenched toe incident of 2007 and a series of online reviews featuring human waste.

But still, a deal is a deal, and I was bracing myself for a day of sliding down inclines of various sorts in all kinds of questionable water.

Happily for me, we didn't wind up at a water park. Our girl, you know the one — the one who is described as inflexible and rigid — changed her plans. 

Here's how that happened.  

When we checked into our hotel in San Diego, our girl caught a glimpse of the siteseeing brochures that lined a case in the lobby.* One of them was for the La Jolla Caves Kayak Tour. We've missed kayaking on the Hudson this summer after the sewage treatment plant fire that leaked untreated waste into the river during the hottest days of July.

I took this hotel-lobby-brochure opportunity to introduce the kayaking possibility.

"Hey Sweet M, what would you think about going on a kayaking tour of underwater caves?

"Underwater caves?" she asked, with mounting excitement.

"Yes, underwater caves."

"Well," she said, "When you're in a new place it is important to see the sites."

"So you'd be game to go to the underwater caves instead of a waterpark?"

"Oh yeah, underwater caves sound good."

And that was that. A plan was changed. A deal was renegotiated. Our girl's longtime inflexibility is giving way to a willingness to try something new.

La Jolla Kayaking Tour at La Jolla Caves
 (photo: courtesy Yelp)

Her dad and I were a bit nervous about the kayaking tour. Her swimming skills are not great, and there was the matter of walking across the sand to the shore line since she still freaks out when her feet hit the sand. And then there was the hurdle of her making her way through the surf line out to the open water.

True to form, our girl started to freak out when her bare feet hit the sand

Ewwwwee.  It's sand.  It's scratchy.  Oh, NOOOO, there's an insect.  Did you see the insect?

Other people on the tour started to stare.

Fortunately, the folks at La Jolla Kayak were awesome. They put our girl in a kayak with Tommy, a seasoned former lifeguard, so she was in incredibly competent hands.

I told our girl to take some slow deep breaths because pretty soon her feet would be in the kayak and there would be no sand.

And that's what she did — she headed right out through the surf line with Tommy.  She was terrified, but she did it.  And once she was safely past the breaking waves, she was full of questions for the guides: what are these pink things on this kelp? (sea anenomes that attached to the kelp because the water has been so cold); are those sand sharks camouflaged? (yes); where are the sea lions? (it's too overcast for them to hang out on the rocks today).

We couldn't have been more proud of our inquisitive seafaring kayaking girl.

Pelly's Mini-Golf Course in Del Mar

The next day we hit Pelly's mini-golf course in Del Mar and the Octopus's Garden by the Sea exhibit at the Sea Life Aquarium in Carlsbad, which has my vote for best aquarium ever because it's just such a perfect scale for kids and families. They have all sorts of multisensory experiences: tide pools for petting starfish, tactile displays of shark skin, whale skin and eel skin, and the huge underwater tunnel with sharks and rays swimming above.

It was a perfect day of mini-golf and underwater creatures, sans water park slides and slimey waters.  Since that afternoon, I haven't been able to get the Beatles tune out of my head  . . .

I'd like to be, under the sea
In an octopus' garden in the shade
[. . .]

Oh what a joy for every girl and boy
Knowing they're happy and they're safe
We would be so happy you and me
No one there to tell us what to do
I'd like to be under the sea
In an octopus' garden with you . . .
In an octopus' garden with you . . .
In an octopus' garden with you . . .

Our world may never be as safe and easygoing as Ringo Starr's Octopus' Garden in the shade, where no one tells us what to do.  And none of us will ever be as flexible as our octopus friends.  But I think I can say we're stretching every day.

*I was in San Diego for the Blogher 2011 Special Needs Mini Conference. More on that soon! 

At Last We Are Muggles

At last we are Muggles.

Well, I suppose we have been Muggles ever since J.K. Rowling came up with the term, but we just didn't know it.

And at Autism's Edges, it's just begun.

For years our girl had too much anxiety to watch the Harry Potter films.  What with their slithering snakes, creeping giant arachnids, and swirling Dementors, they were simply too terrifying. Imagine you have a photographic, or rather videographic, memory and you're never going to be able to erase that scene of the spiders marching off by the thousands into the cavern from the Chamber of Secrets. Or that you'd be haunted by the undead who emerge from the gray waters in Voldemort's cave in the Half-Blood Prince. It was too much.

Just to keep somewhat in step with popular culture, I'd wait for the DVDs to come out and watch at night when our girl was sleeping.

I'll admit that seeing our girl so out of sync sometimes made me sad. I wanted our girl to be in step with other kids, eager to see the films, read the books, and enjoy the fantasy adventure. With the arrival of each film, it was clear that we were not even normal Muggles.

But this year, everything is different. This year, as the final film of the series was released, our girl was ready to get started with it. We've been catching up, DVD by DVD. Last night we watched the Half-Blood Prince and our girl reminded me of her amazing memory, as well as her moral sensibility.

Why do you suppose he'd do that? she asked after Draco had knocked Harry unconscious.

I don't know, I said. What do you think?

Actually, she said, I blame his father.

Why do you blame his father?

Don't you remember?  His father worked for the darkkkk lorrrd, she said, modulating her voice to reflect the creepiness of Voldemort.

Actually I hadn't remembered.  I don't remember that much from movie to movie.  The details of the world of Hogwarts elude me as I focus on other things that require my finite neural networks. But I can relax, because our girl is keeping track with her rather magical memory.  I can carry on with my muggle mind because there's some kind of magic in hers.

Happy Mother's Day 2011

A reader sent me this funny video from momsrising.org.

For some reason I can't embed it here, so you'll have to follow the link . . .

http://movies.cnnbcvideo.com/index.php?nid=1304867185_9988&referred_by=1304866997_8184

Sorry about that . . . not sure why my embed code wouldn't work, but just go look at the video on their website and come back, would you?

I'll wait while you do that.

• • •

Okay, you're back, right?. It was funny, wasn't it? The toothpaste in the ear canal scene was mild compared to what so many of us deal with day in and day out. Wouldn't you like to be able to add in the reality for autism moms?

• Managing therapy appointments that would rival a professional case manager.
• Negotiating with your local school board for services or placements.
• Educating friends and family on what autism means for your child, your family, and for the wider community.
• Making this all happen on a single salary (what we do in our family) because one parent drops out of the labor force to deal with the above. Make that a single 70% salary given the gendered deflation of women's salary that the video goes after. (And we count ourselves lucky because Fathersvox shares the case management load, which is not the situation for single moms or dads taking care of kids on the spectrum.)
• Working hard every day to raise autism awareness and acceptance for all of our kids on the spectrum.
• Loving your child or children on the spectrum more than anything or anyone else in the world, never quite knowing where any of this will take you. It's never been more clear that love doesn't come with an unlimited 100%-satisfaction guaranteed warranty.

Labor of love is what you'd call it all.

But what would make it easier for all of us -- moms and dads alike -- would be if women were not still earning the measly 70 cents for the dollar that their male counterparts earn for the same work.

That's why I posted the video from momsrising.org instead of telling you about the adorable breakfast that our girl conspired with her father to make for me.

Wage inequality hurts us all. It means that women more often than their male counterparts drop out of the paid labor force to manage the needs of their kids, on the spectrum or not. It means that when the man drops out to do that case management work, you wind up with not a 50% loss of wages, but a 59% loss of wages (hypothetical numbers here: but let's say dad earns 100K and mom earns 70K, but dad drops out of the labor force, then the lost wages are 59% of the family's income.)

Wage inequality locks us into gendered roles because it significantly penalizes those who step out of them.

We've made progress. When I first entered the labor force the gender penalty was 40 cents on the dollar. In 25 years we've gotten about 10 cents more on the dollar. That's progress. But consider our girl's progress: last year the toast and eggs were both sort of burnt. This year the toast and eggs were perfection. If she can do that much better, we can do better too. Much, much better.

So this Mother's Day I'm standing with Mom's Rising to say let's solve the economic inequalities that discount women's labor — solve it 100% — and get our breakfast in bed too.

Happy Mother's Day. This video is for you.

http://movies.cnnbcvideo.com/index.php?nid=1304867187_4796&referred_by=1304866997_8184

Surviving: Six Flags, GBGB Day, and Hungry Bears

In advance of my surgery — yesterday was GBGB Day, or Goodbye Gall Bladder Day — we paid a two-day visit to the Six Flags Great Escape and Splashwater Kingdom Indoor Water Park in Lake George, New York.

Sweet M had been begging to go rollercoaster riding at Six Flags, and I'd promised her we'd go this summer — before I found out that I'd be having my gallbladder out. Since rollercoasters would be a post-operative no-go for me, we had to get the Six Flags trip in pre-op.

The indoor water park was really something to see . . . A thunderous sound of water from a giant attraction of waterslides, spray hoses and bucket showers, and simulated ocean waves for artificial boogie boarding. Quite the sight.

I don't know about you , but when I read about amusement park accidents, I usually find myself wondering "How'd they manage to do that?" But once it happens to you, you find yourself thinking "Just how in god's name did that happen?"

Incredibly, my left big toe got caught in the top of the waterslide, so I was more or less dangling by a toe. When I finally liberated the digit amidst a very un-family-friendly spew of reflexive expletives, I went zooming down the slide, luge-style, with my battered toe leading the way.

The park's first aid EMT was just about to look at my toe when a little boy of about six let out a piercing wail after colliding into another child and knocking out a tooth. Following the rules of triage, I encouraged the EMT to deal with his bleeding younger patient, and hobbled off in search of an icepack.

As my incredulity gave way to bruising, swelling, and limping, and a pretty much spoiled week, I just kept wondering, "How in god's name did that happen?" And to think I had been anxious about going to the hospital — about the impending surgery — when I ought to have been worrying about surviving Six Flags.

But the upside in all of this was that as Sweet M were reclining on the bed in our Lodge room, its Adirondack Camp decor replete with images of brown bears, she and I were musing about bears and mosquitoes.

Do bears eat people? she asked.

If they're hungry enough, I said.

No, they don't, they eat fish and berries, she said.

Yes, they do eat fish and berries, I agreed. Detecting just a bit of anxiety there, I added, And the fish eat mosquitoes and flies, so they won't bite you.

She paused for a moment, and announced, So there you'd have a food chain.

A food chain! She knows what a food chain is!

Yes, that'd be a food chain. Where'd you learn about food chains — at school?

Oh no, I learned it on TV.

I'm begining to think I should stop looking for a new school for Sweet M and just invest in a widescreen television. Some people think television is a damaging plug-in drug. I'm thinking that maybe, as one of my favorite disability writers, Martha Beck says, it's a vitamin.