Not Paris: A Blog
Monday, January 24, 2011
I'm back!?
Tuesday, March 16, 2010
Valentine's Day
Actually she’d been alerted to its presence via a text message from her shy and handsome new friend, K.—whose apartment door is about 100 feet from hers—while she was eating a microwaved frozen meat-paste burrito and a Coke for breakfast. Perhaps K. was concerned she might not find the pink envelope he’d left for her, but find it she did and it precipitated a flood of phone calls home. What did this mean? Was this a friend thing or a love thing? What does one do in a situation like this?
“What about walking down to Walgreen’s to get a valentine for him?” Dan asked.
From Walgreen’s she called to ask if she should get the one with bees on the front that said Bee Mine, or something more neutral, like the one with a cartoon Shakespeare writing illegible (and, therefore, neutral) messages on wee little candy hearts, and also, there were these little heart-shaped chocolates, should she get those, too?—and once back in her apartment, should she write an additional message inside the card, and if so, what should she say?
“Well,” I said, taking the call this time, “you could say something like: I’m happy that you joined the program and I’m looking forward to getting to know you better...”
“Wait, slow down. I’m happy that...what?”
Two days later she called sobbing because her longtime online celebrity role-playing (histrionic, bi-polar) friend—her closest friend in the world for 2+ years (whom she’s never actually met)—was livid about Molly’s exchange of valentines with K. and was now doing and saying mean and hurtful things on purpose.
For years Dan and I have been suggesting with increasing vehemence—but without success—that flesh-and-blood friends are so very much more satisfying than virtual ones. So when Molly announced through her tears, “I can’t do this anymore, Mom. I want to leave the game and change my phone number,” I jumped around the kitchen in silent ecstasy. And despite all the discharges of telephoned grief over the ensuing days and nights, Dan and I, and all the flesh-and-blood human friends we had notified about this important development, remained ecstatic.
Several days later, Molly called Dan all out of breath. “Dad. Dad. I have amazing news.”
“What?!” he said, putting her on speakerphone.
“Guess.”
“K. held your hand?”
“No, but close.”
“He kissed you?”
“Dad. No! Come on.”
“I don’t know, honey. Just tell me.”
“K. just asked me out!”
“Hi honey, it’s Mom,” I said, leaning closer to the speaker. “That’s fantastic! Is he there now?”
“No, he just texted me.”
“And you texted him back?”
“Yes! Isn’t this fantastic?”
“Do you maybe want to invite him to come over?”
So she did, and he did, and there was actual human cuddling on the couch and, a few days later, declarations of undying something, and all of this was cause for a weeklong series of celebratory gin and tonics for Dan and me.
Our gaiety continued for several days until we received a text that sandwiched this breezy message: “A creepy guy just offered me a ride while I was waiting at the bus stop,” between two gushing assertions that K. is the kindest, handsomest, most loving person she has ever known—that she will ever know—and she has never, never been happier.
“How nice,” I texted her back, fumbling for the 24-hour hotline to her program’s director whilst trying to decide if the police should be the first call I made.
After a period of intense investigation that evening, Dan located a five-foot-tall woman with a 10th degree black belt in something who had already worked with a few people on the autism spectrum. In an hour he’ll make the 2-hour drive to Monterey so he and Molly can spend six hours learning how to kick the shit out of a heavily padded pervert-shaped person.
In the meantime, Molly appears to be avoiding our attempts to reach her. We learned from her therapist this week that she canceled a 9 AM session at the last minute because it was “too early” and she was “too tired” ($125 down the drain). From one of the coordinators in her program we heard that she wants to drop one of her classes at the community college because it’s “stressing her out.” In the past, this behavior would mean the beginning of a downward spiral of the sort that often results in her inability to leave her bedroom. Now, however, it might simply mean that she’s assigned a higher priority to the pursuit of human contact on the couch with K.
In either case, Dan will soon arrive to handle whatever needs to be handled, and I have this day to enjoy a quiet home in which there no longer lives a lonely young woman who watched movies all day, and ate microwaved chicken nuggets and chocolate chemical cake, and pretended to be Anna Popplewell from the Narnia movies in an online game with someone who pretended to be James McAvoy—instead of learning to be a human who is truly attached to other humans. For me, a pretty good day.
Wednesday, March 25, 2009
Direction
Two middle-aged women were driving home from Tahoe and it was snowing, and it was because of the snow and a ridiculous amount of traffic that they’d been stuck spending an extra night at their writing retreat and they were just a little bit testy with one another, for various reasons, despite the fact that they love each other, but this time, and unlike the night before, they made it smoothly past the highway patrol checkpoint because at a gas station way back in Truckee they’d paid a young man, with unfortunate skin to install the chains they weren’t sure were even going to fit, but the chains did fit, and now the women were on their way home on a gray and snowy morning, driving as fast as they could go with chains, which is not at all fast. They weren’t talking because of the irritability I mentioned earlier, but instead, were looking out the window at the silent, snow-covered trees thinking silent but appreciative thoughts about how lucky they were to be driving home through the mountains on a Monday morning.
When the snow gave way to slush and they saw two truck drivers at the side of the highway removing their chains, the two middle-aged women pulled over, too, and got out and were pelted by big slushy snow-rain drops while they looked at the chains on their tires and muttered various versions of hmmmm and wondered what, in the absence of a knowledgeable young man, they were going to do about de-installing their chains. The women didn’t exactly scratch their heads but neither were they setting about the task at hand with a can-do attitude, which is probably why the driver of the truck right behind them, wearing a short sleeved T-shirt that didn’t quite cover a beer-belly noteworthy in size, and a baseball cap with a manly, possibly Republican logo approached and said, “Need help?” When both women nodded vigorously, the possibly-Republican truck driver, with no jacket or tarp, and with ungloved hands, laid himself down directly on the slushy gravelly shoulder of the highway and, with considerable effort and freezing hands, proceeded to remove the chains. When he was done, but before he could scoot back to the warmth of his truck, one of the middle-aged women said, reaching out with a folded-up twenty dollar bill, “Here, sir, have yourself a nice breakfast…please, on us.” The truck driver jumped back as if struck and quickly raised both hands as if to communicate an emphatic HALT.
“Please,” the women insisted, but by then he was halfway back to his truck, and he kind of yelled over his shoulder as he climbed up into the cab: “Pay it forward. Right?”
So the woman with the twenty nodded and vowed to keep that bill separate from the other bills in her wallet and to watch for the first opportunity to pay it forward but when she got home, finally, to her warm home in Berkeley (a town with lots of street people young and old carrying signs requesting spare change) she was immobilized by this vexing question: would it be better to give that twenty to someone who would also pay it forward? Or should she give the twenty to the first person who asked, who would more than likely be the overly assertive but relatively well-dressed “homeless” man with the lawn chair and cell phone who has taken up residence outside Zachary’s Pizza on Solano and pretty much terrorizes every passerby?
While she waited for her mind to be made up she went ahead and gave the Zachary’s Pizza man a dollar, and the schizophrenic man outside Peet’s a dollar (which she usually does anyway) and the terribly troubled old woman on Shattuck a five—but none of that was likely to be paid forward.
That twenty got mixed up with the other money in her wallet, and maybe was converted into quarters for the new parking machines the citizens of Berkeley find so irritating. But she’s still watching for an opportunity to pay twenty dollars forward. She will definitely jump on the first opportunity.
BACKWARDS
When a middle-aged woman’s disabled daughter, at the age of 22, moved to a town two hours away, the two of them began text-messaging immediately. Some of the messages were funny and some were somewhat dire and many were cries for help and others were just sweetly newsy—and even after seven months, the woman can’t quite press the button on her iPhone labeled ‘Clear All’ because sometimes she feels like paging back and back and back, all the way to that first text message last August when the story of her daughter’s unexpected leap into an independent life first began. What’s the character limit, she wonders now, and how will it feel when she and her daughter reach that limit, and the history of the last seven months in short bursts of text finally evaporates into the ether?
SIDEWAYS and UP
Mona, the smallest of our two dogs, can’t, without human assistance, make the leap up to the Kasbah (our household’s favorite comforter-covered leisure location) so we’ve devised the following system: one of us lowers her hands over the side of the platform and positions them near the floor one Mona-width apart. Using an endearing combination of canine maneuvers, including forward, backwards, and the especially smile-producing sideways, Mona inserts herself into the waiting human mechanism and gives a little pre-leap to indicate her readiness for ascent.
This never fails to cheer me up.
Wednesday, October 29, 2008
Sarah Palin Doesn't Speak for Me
When I heard that the Republican vice presidential nominee would be delivering a policy address on “special needs” children (because this was part of her “portfolio”) I thought, really? Sarah Palin, mother of a “special needs” child since April, considers herself already qualified to step confidently to the microphone and speak to, or on behalf of, us—parents of children with disabilities—nationwide?
It’s true that parents raising children with disabilities—along with adults with disabilities, of course, and those who care for, and fight for the rights of people with disabilities of all ages—belong to an unofficial alliance comprised of people who ‘get it.’ Even without a secret handshake, members of our organization recognize each other more or less instantly in public, just as we can easily identify people who think they understand, and talk as if they do, but really don’t. Governor Palin, by virtue of her Down syndrome son, already has a provisional membership in our club (the club hardly anybody wants to be a member of), but she hasn’t, in my book, earned the right, as she suggested in her speech on Friday, to be our “friend and advocate in the White House.” Sarah Palin doesn’t speak for me.
For weeks I’ve been watching uneasily as she stepped before crowds with her bewildered and somewhat stiff-looking baby in her arms, the rest of her large family parading silently behind. The roar of crowds was a good thing for Trig? Or was it possible Governor Palin, or someone in the McCain-Palin campaign, hoped to win votes with this heart-warming display of family values and inclusion? I came away from her speech on Friday, as I do from many of her public addresses, scratching my head.
But wait, let’s back up and try to be fair. Sarah Palin does have nice teeth. Her Japanese eyewear is outstanding, and really, she looks great in her new clothes. Simply put, the woman is nicely put together and shockingly photogenic. Unlike many of us, she has mastered the art of walking in very high heels, and, I mean, who has that many good hair days in a row? And with such variation! There.
Back to the real issue: I’m a mother of a child with disabilities; the Republican Party is offering me what, exactly? School vouchers, it sounded like, and generalities like, “giving these families better information” and the “reform and refocus” of dollars already in the budget.
It’s good news that both campaigns appear to consider the disability community an actual constituency worth winning over. Yay. But it’s abundantly clear that Barack Obama and Joe Biden have given their “Plan to Empower Americans with Disabilities” a great deal more thought than John McCain and Sarah Palin have given theirs.
Barack Obama and Joe Biden, for example:
· Believe all states should have newborn screening programs, and they support a national goal to provide re-screening for all two-year-olds (the age at which some conditions, including autism spectrum disorders, begin to appear) because disabilities identified early enough will help children and families get the supports and resources they need.
· Want to invest $10 billion per year in early intervention educational and developmental programs for children between zero and five.
· Support a measure, cosponsored by Obama, that would expand federal funding for life-long services for people with autism spectrum disorders, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.
· Support vocational rehabilitation programs and will assure there is sufficient funding to empower Americans with disabilities to succeed in college and beyond.
· Will appoint judges and justices who exhibit empathy with what it means to be an American with a disability.
(I could go on and on but instead I’ll simply urge you to visit the links provided below.)
I’m clear that Obama is the “friend and advocate” I want in the White House.
But here’s what’s really worrying me this morning: some parents of children with disabilities—because they feel tired and worried so many of their waking hours, and because they so need someone in the White House who ‘gets it’, and because they might not have the time or energy between suctioning their kids’ lungs, or whatever, to compare the two campaign positions closely—some of these parents might have listened to Governor Palin’s speech on Friday with feelings of weepy, overpowering hope, and concluded that this perky woman—with her nice clothes, cool spectacles, interesting up-do’s, down-home soccer mom delivery, and Down syndrome baby—is in the better position to help them.
That would be a mistake.
* * *
Tuesday, June 10, 2008
Be Here Now
At first there were flurries of phone calls, torrents of tears, guilty hand-wringing, and massive misgivings. Driving from our house in Sea Ranch to the one cafe in Gualala with wireless internet, Wendy said, “If you need to go home to deal with all this, honey, that’d be okay—you know that, right? I mean, I love it here and I love that the writing is going well, but you do what you need to do. Okay?”
“Here’s the thing,” I said, staring out the window at the ocean, “We’ve been dealing with crises like this for twenty-two years, Dan and I. More than that, actually. What I figured out not that long ago is, if we let shit like this derail us from the things we want for ourselves, when we don’t go ahead and do these things anyway, our lives get so...small. So narrow, you know? And bleak, filled with frustration and resentment.”
Wendy nodded. She has her own tsuris.
“Dan is handling things at home,” I said. “I trust him. It’s okay for me to be up here, I think, and it’s even okay for me to go ahead and feel happy.”
Hovering off shore, maybe ten miles out, was the same layer of marine fog I noticed the day we arrived when we first caught sight of the ocean. It doesn’t seem to roll in at night and clear off in the late morning the way you’d expect. Over us, it’s clear. The whole time we’ve been here, nothing but breezy sunshine.
Monday, June 9, 2008
A Buried Lead
Sunday, June 8, 2008
Bon Voyage
What it sounds like, basically, is danger. And inevitability.
Where are you going, exactly? And why aren’t the people you’re waving to going with you?
Shouldn’t the process of booting up your laptop—the dainty pressing of a single M&M-sized button—while you sit in the kitchen on a Sunday morning, drinking tea in your pajamas, feel tame and predictable? Relatively risk-free?
It doesn’t.