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.

On Turning Eighteen

On Friday our girl turned 18.

Her deepest wish for the occasion was to have a family movie night with her father and I where we'd watch Frozen and eat Caravel ice cream cake. So that is what we did. She was thrilled, ecstatic, beside herself.

Her father and I each restrained ourselves for two hours from checking our email and Facebook feeds to check on friends and family in Paris.

There is more I could say about turning 18 and having Frozen on the top of your watch list. And more I could say about parenting a girl who is turning 18 with Frozen on the top of her watch list.

But for now I'm going to say less, holding in my heart the parents who lost children in the attacks this week in Paris, Beirut, and the continuing siege of Syria.

On Aiming Low

"Aim low," advised MOM-NOS. Years ago this wise autism mom described the perils of having one's child described as "high functioning" and the risks of being shortchanged on the supports and services that can make his or her so-called high-functioning possible.

I've kept MOM-NOS's advice in mind over these years as we've tried to navigate a path for our girl that neither underestimates her potential nor overstates her functioning. Sometimes I fear we have aimed too high. Often I feel that she has had inadequate supports because we elected to keep her at a school that has high academic standards, but very minimal scaffolding for social communication issues.

So with the "aim low" advice echoing in my mind, and as our girl's 18th birthday approaches, I have found myself in the sometimes unsettling position of applying for Social Security disability for our girl one week and going on college admissions tours the next.

The transition planning materials I've been reading say it is imperative to apply for SSI before the child's 18th birthday. A good friend has nagged me, saying it would be irresponsible to not get our girl the aid that she needs now, and may need in the future. Our girl's school principal advised us to put in her application. And the final push came when I listened to a gentleman our age recount the nightmare of trying to get SSI for his autistic adult brother because, in his words, his parents had been too proud to ask for help. Our girl has no siblings to help her in the future, so it's up to us to get what she needs set up for her.

Dealing with the Social Security Administration has been a surprisingly good experience. The care and support of the people there has made me want to urge Congress to up their budget, expand their services, and ensure that a citation of excellence be awarded to the agent that handled our case.

And yet. And yet. The requirement of abject debility in order to secure the supports one needs to foster and realize potential remains the autism parent's conundrum.

At one point in the phone interview our SSA agent remarked that this case should be a presumptive determination in our girl's favor because our girl would be permanently disabled. She'll be entitled to these benefits for the rest of her life, he assured me.

I knew I was meant to feel happy, relieved and grateful, but you know that my heart sank.

If this were one of the 1950s Tom & Jerry cartoons our girl likes to watch, my heart would have fallen from my chest and crashed through the seven apartment floors below us and landed in the basement, next to the boiler, bruised, broken, in need of bandages.

Ouch. Permanently disabled. Entitled to a tiny (though admittedly helpful) $500-700 for the rest of her life. Restricted from having more that $2000 in assets. Limited to earning $1000 a dollars a month or less.

The next week the SSI paperwork arrived and I sat down to review it, required to certify, under penalty of perjury, that the contents were accurate. The management and reporting on her benefit was assigned to me because, according to the paperwork, she suffers from "mental retardation."

Our girl's watercolor, 2009

Yes, that was the language. Mental retardation.

I winced. Apart from this not being accurate — we had never discussed our girl's IQ, which is pretty average as IQs go — mental retardation?  Do we even say that anymore? Isn't there a national campaign to end the use of the R-word?

I phoned the Social Security agent to correct this point, and he was so apologetic. Yes, he said, no one uses that language anymore, but that's just one of the only boxes we can check. Some people, he said, call and yell at me about this, but it's really just the form.

We corrected the record for our girl by using the box for "Other, please specify" and noted that she needs assistance with her funds because autistic communication impairments make money management ill advised. I wanted to add "at this time" to leave wide open the door for her to manage her own affairs, but I didn't want to push it. A presumptive determination in her favor would be a great help for our girl.

As I searched for ways to reconcile the lows and the highs of this transition planning time, I came across this watercolor that our girl painted some years ago of a rocket against a field of blue, aimed at an amber sphere. At the risk of sinking into a banal metaphor, I'm no longer thinking of us as aiming low, as wise as MOM-NOS's advice has been. Now I imagine us shoring up the launch pad for our girl, making sure the ground is stable and firm, finding a way to set the stage for her launch, but allowing the destination and trajectory to be her own.

To the Woman Who Rolled Her Eyes When My Daughter Asked a Tour Guide If She Would Speak More Slowly

To the Woman Who Rolled Her Eyes When My Daughter Asked a Tour Guide If She Would Speak More Slowly:

You know who you are. You're the one on the college tour with your handsome son and tall husband. You're the one with the perfect salon-blonde hair, the Louis Vuitton shoulder tote, and the 1.5 carat heart-shaped diamond earrings. I saw you. I took you in. I thought about you for so much longer than you ever thought about my girl. I carried you along with us. I could not leave you behind on the tour, though my girl seemed to not even notice you.

It happened in a micro-second – your disdain and dismissal of my girl.

All of us were on a college tour (yes, dear readers, we are going on college tours – more on that soon!)

We were in the long echoey hallway of a major university in our city and the student tour guide was showing us the university's library from the corridor just outside – not from the quiet zone just behind the glass doors. A custodial worker began pushing a noisy cart through the hallway – it echoed and rattled off the long tile and cinderblock walls of the hall.

As the tour guide described the two million volumes available to students, my girl said, "Excuse me, could you speak a little slower, I'm having trouble hearing." This was a polite request for an accommodation. She spoke softly, clearly, with good tone and no urgency (however urgent it may have felt to her). Trust me, we've worked on this.

And that's when it happened. You rolled your eyes and then you looked around to find someone with whom to share this moment of superiority and dismissal. But no one returned your look. It's possible no one even saw you except me. My girl didn't seem to see you, for which I'm grateful.

The student tour guide graciously adjusted her pace and we continued on the college tour.

But from that moment forward, I could not stop thinking of you. Honestly, I was furious with you. Who could you be? Who are you that you would dismiss my girl's calm and polite self-advocacy?

I tried (and failed) to be generous: Could you be terrified about the road ahead for the handsome young man you have raised? Could you be often considered stupid and slow yourself, as pretty blonde women generally are? Could you be scared and alone behind the branded bag and bobbles, next to the perfect-looking son and husband?

I couldn't take your side. No, I wanted to take you aside and ask you how you could do that? How could you roll your eyes at my girl's request for a little slower speech?

I wanted to tell you a thing or two about my girl. I wanted to tell you how she has worked harder than you have likely ever worked on anything just to learn to talk. I wanted to tell you that she was told that she'd never learn to read and is now passing her high school exams and looking at colleges. I wanted to tell her how she hard it is for her to process language, especially in noisy rooms or corridors like this one. I wanted to tell you that your contempt makes the world a smaller place for my girl, but for you as well, for you most of all.

But I didn't. I didn't take you aside because, well, I didn't want to upset my girl. She didn't seem to notice you and I didn't want her to. She's the point, you aren't.

But still, you were there, and you changed my day. You made me wince at the realization of how much farther we have to go. I thank you for that realization. I won't soon forget you in the heart-shaped diamond earrings. I hope that some day you'll have a heart that's made of something other than stones.

Yours in college searching,

m.

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.