Sunday, November 15, 2015

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.

Tuesday, November 10, 2015

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.

Saturday, July 18, 2015

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,


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.