Silicon Valley Moms Blog

In which the political becomes deeply personal

When I moved to San Francisco after college, I had as many gay friends as straight ones. We went dancing together, cooked each other dinner, teased each other mercilessly about our boy and girlfriends and sat up late into the night when one of us was sad or lonely or brokenhearted.

None of us thought yet about marriage or children: we were just excited about our newfound freedom, about the future, about living in a city that accepted everyone at face value and in which so many things seemed possible.

And then my friends started dying; first one by one, and then faster and faster. The Castro was surreal: a once-vibrant neighborhood filled with gaunt 30-year-old men with canes.

Obama and McCain: a little post-game analysis

I'm not old enough to remember John F. Kennedy, but I do remember the hush that fell over my family when they spoke about him so many years later: the reverence, the respect, and the sense of real promise too soon taken.

They made do with Johnson, suffered through Nixon, ignored Ford, threw up their hands at Carter and went into shock when Reagan was elected.  An actor?  Running the country? Really?

Growing up in California in the seventies, I never felt a sense of reverence for the office of the President.  They were just men to me: flawed, remote, sometimes ridiculous, with moments of gravitas, even grandeur from time to time.  And Bill Clinton (the first president I ever voted for), well, you broke my heart with that Lewinsky thing--you really did. 

So, I am somewhat ashamed to admit, I watched the Presidential debates Friday night as if it were, well, a baseball game. Who'd get a hit? Who'd drop the ball? Who'd win?  But something entirely different happened.

Don't stop the music

In the wake of the Olympics, the Democratic National Convention, the nomination of Sarah Palin and now Hurricane Gustav, is it any wonder that school started with nary a whisper?

For those of us with kids with special needs, girding up for the beginning of school resembles nothing more than Batman preparing for battle: first the suit, then the cape, then the leather gloves and boots, the mask, the nifty belt: a little kinky, but you get the point.

My son entered Kindergarten last week. He's a smart guy, very sweet, funny and warm.  He's also on the autism spectrum, and his speech and social skills lag behind his peers.  He tends to wander off, needs help with most school assignments, and is terrified of loud noises.  He loves books.  He learns very quickly.  He finds recess excruciating. 

Give me your dorky, your poor, your socially-challenged

For anyone who felt nerdy, unattractive, unappreciated, misunderstood, bullied or otherwise confused in middle- and high school, this is your lucky day.

Can I Sit With You? The Stormy Social Seas of the Schoolyard, edited by Shannon Des Roches Rosa and Jennifer Byde Myers, is an anthology of writing by adults about their middle- and high-school experiences. It's also a Web site, a network and an ongoing literary project, collecting stories--the painful, the never-admitted-to, the embarrassing and outright funny--of teenage social angst, anxiety and conflict.

But what makes this book so remarkable is that everything--from the cover artwork by noted Manga artist Lea Hernandez to the book design--was donated with one aim in mind: to fund SEPTAR, the special education PTA that Des Roches Rosa and Myers co-founded in Redwood City, California, their local school district. The goal? To offer support and additional resources to families of children with special needs.

Google, we have a problem

It seemed like a good idea at the time. Our five-year-old son Isaac can be hard to engage, so my husband J. thought that a little fun with Google Image Search wouldn't hurt. After all, what's wrong with pictures of cars? Harmless fun, right?

And oh the joy. "I want to see trains!" he'd crow, and J and Isaac would sit down for a few minutes of father-son Googling. "I want to see buses! I want to see elevators!" And, with just a few keystrokes, he'd get his wish. Magic.

Except for one major miscalculation. Okay, three. First, Isaac was just learning to read and write. Second, we underestimated the sheer joy of seeing his ideas come to life on the screen. Third, we really, really underestimated his resourcefulness.

A few weeks ago, we came back from a trip, and I let Isaac play on the computer while I unpacked and started his dinner.

Reality check

I rolled out of bed late yesterday and ended up in a mad dash taxi ride to work.  The sky was a smoky orange from the fires raging around the state. Ominous. I struck up a conversation with the driver, a 50-ish Latino guy who looked like he'd seen a lot.  "Did you hear about the family that got gunned down in the Excelsior this weekend?" he asked me.  "Road rage. The driver must have flipped him off or cut him off or something, and the other guy just pulled alongside him and shot everyone in the car. The dad and his two boys. The last one died today at the hospital. He was already brain dead. They had to pull the plug."

I felt my eyes well up. "No, I hadn't heard that. It's horrible." We talked for a while longer; he told me he still believed in spanking. "Not beating a kid up, no, but a good spanking. There was this lady in my neighborhood when I was growing up.  She used to look after us, pull our ears when we did something bad."  I was still thinking about that family. "It's funny," I said, for no reason at all.  "I just feel sad  today."

Gay marriage: this time it's personal

I have a relative who lived an entire lifetime--married, raised three kids to adulthood, finally retired.  Several years ago his wife died after years of chronic, debilitating illness.  Some time later, he went on a diet, lost 100 pounds, moved to South Beach and--now in his 60s--came out of the closet.

At my wedding nearly 14 years ago, I remember wondering how it felt for our gay friends to attend so many weddings, buy so many gifts, celebrate with so many friends, yet not have the same right in return.  "Always a bridesmaid, never a bride," one wryly put it.

I'll have the champagne, the halibut...and a label maker

Yesterday I awoke to the following:

Isaac: I want to play on the computer!

J [stage whisper]:  Okay, Bean, go wish your Mommy a happy Mother's Day, then you can play on the computer.
[poundpoundpoundpoundpound down the hall]

Isaac: Happy Mother's Day, Mommy!

Me: Thank you sweetie! Can I have a hug?

Isaac: No.  [Hugs me].
[poundpoundpoundpoundpound back down the hall]

Isaac: Step one, say Happy Mother's Day to Mommy!  Step two, play on the computer!

I fell back to sleep until 9:40.  Bliss.

Getting things fun

Right before Isaac was formally diagnosed, I was invited to a going-away party for a wonderful Floortime therapist we'd met. Everyone there was very kind, but I really felt like the newbie: surrounded by mothers who openly referred to their kids as "autistic," I cringed every time I heard the word.

At a certain point, someone kindly asked to see a photo of my son. I pulled it out of my purse, and she murmured how handsome he was. So I asked to see a picture of hers, and she produced a photo of a very cute five- or six-year-old boy grinning through a cascade of golden curls. "Wow, his hair is amazing," I said, smiling as I handed it back to her. "Yeah," she answered ruefully, "We have to use everything we've got." I left feeling unbelievably depressed.

When it comes to play, kids on the autism spectrum can have a hard time. The sensory demands, the social cues, the innate understanding of how a toy is supposed to be used or a game to be played--can be a challenge for kids who perceive the world differently from us. But over time, I've learned how to listen (okay, not always, but work with me here) and keep things moving. And it helps that Isaac is a lot more relaxed, regulated and engaged as he's grown older. At almost five, he's finally opening himself up to play.

Autism: Are you aware yet?

April 1 marks the first day of Autism Awareness Month, and the media are ablaze with story after story after OpEd  after story about autism's mysteries, controversies and neurological underpinnings.  CNN has been particularly active, launching a series this month entitled Autism: Unraveling the Mystery.  And there's a lot to unravel, with no assurance that you will end up with anything more than a crushing headache and a big pile of yarn in your lap. 

As someone who writes about autism almost daily, I am struck by the themes that emerge when you look at the news coverage as a whole.  CNN, who clearly made an editorial commitment to cover autism in depth this month, is taking an all-encompassing viewpoint, spanning the medical, scientific, cultural, familial and social implications of the disorder, with commentary, links and video in addition to straight news reporting.  It's cogent and thorough. 

It's also a fascinating time capsule into the current state of our cultural attitudes and assumptions about autism. 

Blame it on the Thunder Burp

Earlier this week, NPR broadcast a story by Alix Spiegel on the relationship between imaginative play and self-regulation in children. The theory, based on work by Howard Chudacoff, a cultural historian at Brown University, holds that the nature of play has changed dramatically in the last century, from imaginative, fluid and active to more narrow, rule-based and focused on toys. "It's interesting to me that when we talk about play today, the first thing that comes to mind are toys," says Chudacoff. "Whereas when I would think of play in the 19th century, I would think of activity rather than an object."

Chudacoff points out a number of other factors that have dramatically altered the nature of play in the last century: the growing concern for safety, and an increasing thirst for achievement among the middle class.  He argues that this decrease in imaginative, unstructured play correlates to a reduction in children's ability to self-regulate, which is critical to emotional development and, yes, success. 

Those of us who have children with special needs or learning differences have often been sensitized to the importance of play.  In fact, "Delays or abnormal functioning in...symbolic and imaginative play" is one of the diagnostic criteria for autism, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), a tome with which I am all too familiar.

The Kindergarten Dance

Just when you start to ease into the preschool groove (if you are so lucky), it's time to start thinking about Kindergarten. Now I'll put down good money that our parents didn't experience the same agita about this; in fact, I hazard a guess they were a little, well...relieved when we finally toddled off with our cartoon lunchboxes in hand. But then we are the culture of fear generation, aren't we?

And then, for some of us, there's the special needs thing. Inclusion? Medical support? Special Day? Geographically possible? Is he/she ready? Public or private? Will she/he get in? What can we afford? There's a potential spin-out around every corner (especially in my city, where the process seems to have been designed by a group of experts in medieval torture).

So I went to another kindergarten tour the other day. We're looking both at "independent" (read: private) and public schools since, well, we're masochists and want to know exactly what is is we won't be able to afford. I have to admit I was pretty intimidated at the first tour, unsure of whether to "out" ourselves and take the chance that we'd be remembered as the family that will be FAR TOO MUCH WORK TO ACCOMMODATE, rather than the helpfully candid, friendly and reasonable sorts that we are. So I asked the dreaded question, but wasn't sure if it was really the right thing to do. And, well, here's how that turned out.

How to Lose Friends and Influence, People

So I open my email this morning to discover that I now have one less friend than I did yesterday. On Facebook. Turns out my friend Jordan saw yesterday's NYT article about Facebook's new advertising strategy; that they plan to sell "ads that display people’s profile photos next to commercial messages that are shown to their friends about items they purchased or registered an opinion about," and she packed up and got outta Dodge.  [In case you're wondering what happens when someone de-activates their Facebook account, it's like they never existed.  Photos, profile, everything, down to the two sweet wall posts she left on my profile. Sad.] 

Here's what she had to say:

Hi All - I just deactivated my Facebook account. I've totally enjoyed our silliness with it and all, and it was a good experiment to see what it's all about (as much as anyone in their 30s can actually understand that!), but I am too cynical to think it's not just a way to use our information for other purposes. Here's an article from today's NYT that prompted me to go ahead and cancel. Sorry! xo, Jordan

Autism: The Musical

Tuesday night, I sat in a tiny, packed theater filled with nervous, emotional parents of kids with autism. I don't think any of us knew what to expect, from the movie or ourselves.  A musical?  About autism?  THAT sounds fun.  I've been trying to collect my thoughts ever since.

In brief, the story goes like this: Elaine Hall, adoptive mother of an autistic Russian boy, decides to re-enter the workforce and do what she loves and knows best: help children with autism express themselves. She founds the Miracle Project, a program to engage with kids through drama, music and movement. Autism: The Musical is the story of those kids.  It follows Hall and the kids as they navigate through the process of interacting with each other, writing the musical and, ultimately, performing it in front of an audience of family and friends.

What can I say? It was one of the most moving, honest portrayals of the impact of autism that I've seen. Each child and each family was finely drawn, and allowed to express the full range of their feelings:

Get The Lead Out!

This recent wave of lead-related toy recalls makes me a little nuts...but it's a good reminder that toys are by no means the only lead hazard that children are exposed to. Before my son was born, we had our house tested for lead paint, so we'd know exactly which window sills were poisonous should he choose to snack on them. We did it in the hope we were simply being paranoid and overprotective, but now, nearly five years later, we see that the paranoia has paid off: we've evacuated a whole vlillage of toys (and honestly...have we gotten them all?)

The CDC has finally twigged to the fact that this horror show is a GREAT opportunity to educate the American public on what exactly constitutes a lead hazard. Today I received an email alerting me to the fact that "the CDC estimates nearly half a million children living in the U.S. have blood lead levels high enough to cause significant damage to their health." And what do you do when a health crisis looms? That's right: name a week after it.

Rethinking My Vote

Most everything I know about politics I learned from watching Jon Stewart and The West Wing.  I admit it, I'm not wonky that way, and the Sportscenteresque political coverage annoys me.  Who cares if more people approve of Mitt Romney today than yesterday?  And let's just say that I have a pretty good idea of how the sausage is made, and it's not pretty.  Policy changes follow polls, positions shift on a dime, mud is slung and re-slung, and I have as good an idea of who Angelina Jolie really is as I do the candidates (I take that back: I have to admire someone who tattoos the birthplaces of her children on her body.  Now that's commitment.)

So I was curious to meet Elizabeth Edwards at the BlogHer '07 conference in Chicago, and even more curious to meet her again with my fellow Silicon Valley Moms on Saturday.  She was warm, personable, genuine, and deeply thoughtful about things that I care about: education, health care, sure, but mostly: people.

As the parent of a child with special needs, I am intimately touched by all these issues.  Education, because my son's current program just...doesn't...work.  Don't get me wrong: the teachers are committed and talented, and they genuinely seem to care about my kid.  But school starts at 9:20 and ends at 12:20,

Uh-Oh, I'm Having an Identity Crisis

Hey guess what!  I just bought an iPhone.  For someone I have never met.  Why would I do such a thing, you ask?  Was it generosity?   Random act of retail kindness?  Nope, none of that.  In fact, I had no idea I had done it at all until I saw an unfamiliar $400+ charge on my bank statement yesterday, and thus began a thrilling afternoon of closing bank accounts, making tons of phone calls (including the Apple store, which, I suspect, has seen this particular issue once or twice before) and generally bemoaning the sorry state of humanity.  (Duh, stupid identity-stealing person--don't buy a phone--it's like attaching a GPS to your ass. Haven't you seen The Wire?)

So, for any of you who have not been through this particular species of hell (and there are currently over 165 million of us whose data has been breached in some form or fashion, according to Privacy Rights Clearinghouse, a consumer advocacy organization), I offer Susan's Steps to Surviving Identity Theft: 

1. Make or buy yourself a nice cup of coffee.  It's gonna be a long afternoon.  I recommend

The Momosphere Talks Back

The blogosphere has been aflame this week with a lot of discussion on how to market to bloggers, women, and, most particularly, women of color. The catalyst for a lot of this was the "State of the Momosphere" panel at BlogHer07 last weekend. Stefania wrote about this on Kimchi Mamas earlier this week, Mocha Momma did a very pointed recap entitled "Marginalization & Marketing" on the 30th and Mom-101 wrote on the 31st. I encourage you to read them all--and the comments too. And when I got back to work, I wrote a piece from my point of view both as a blogger and as someone who works in the marketing world, which has collided in strange and interesting ways this week.  If you've written on this, know of a must-read post or have something to say after reading these pieces, please leave a comment below.  And let's keep talking about this, okay?

Liveblogging Quotes for Elizabeth Edwards at BlogHer 07

Whatever your politics, join me in appreciating the grace and strength of character of Elizabeth Edwards, wife of presidential candidate John Edwards. She is the closing keynote here at Blogher 07 today. Quotes for the day:

On being attacked on the Internet and the media: "My experience of trolls; they don't go away if you ignore them. The same thing is true of Ann Coulter."

On stating her views, even when they differ from the campaign's: "No one's ever asked me to stop talking."

On Hillary Clinton and the Defense of Marriage Act: "She's in favor of repealing some of it. John and I are in favor of repealing all of it."

On universal healthcare: "The national will is there. But to pay for it we're going to have to raise taxes."

On Hillary Clinton: "If you say as a woman you should support me, then you should lead on the issues that are important to women."

On youth involvement in politics and community work: "I think one of the reasons young people are not involved is that they feel powerless, and that their voice will not be heard...I think it's part of the jobs of campaigns--wherever they are on the spectrum--to hand young people a megaphone."

On Iraq as a women's issue: "Iraq is a women's issue...I bet in 2004 I did not have a single event where a woman didn't cry in my arms for the loss of their child, or in fear for their child. I think if women were in charge there would be no more wars."

On the politics of war: "I was once at a fundraising event when the the audience was asked who among them had a relative who was serving in Iraq, and not one of the guests raised their hand--but all of the people who were serving raised their hands."

On the politics of media: "John has said that he does not want Rupert Murdoch to be the gatekeeper of the information that Americans receive."

More on Rupert Murdoch: "I don't agree with Rupert Murdoch. I agree with me all the time. But I still don't think I should be the sieve through which all information flows."

On where she gets her news: "I turn on the BBC. I don't want to hear 90 seconds on an issue. I want to hear it fully discussed."

On self-expression: "I think people dye their hair purple because they want to be noticed in a very crowded world."

On campaigning in Texas: "I'd like John to go to Texas and campaign against Rudy Giuliani."

On how her faith informs her political views: "I believe that we are given a set of guidelines and that we are obligated to live our lives with a view to those guidelines....not because of the promise of eternal life, but because it is right."

Anyone want to join me in nominating Mrs. Edwards as a write-in candidate for 2008?

Photo courtesy of Stefania Pomponi Butler at Citymama. And thanks to Robyn and Glennia for filling in a few quotes I missed.

This post also appears on my personal blog, The Family Room.

Liveblogging from Blogher 07: Book to Blog, and Back Again

I'm live-blogging this session for the benefit of my mom-blog-writer friends who I KNOW have a book in them--you know who you are. It's 10:15 on Saturday and I'm in a room with about 100 other women curious about how to turn their blogs into a book.

The panelists are Denise Wakeman, founding member of The Blog Squad, writer and editor Ariel Meadow Stallings, Lifehacker founder Gina Trapani and ICM literary agent Kate Lee. Kate represents a number of bloggers--she started out as an assistant trying to find clients, and through them, her niche. She began by contacting people she'd met online, and it spread virally at the beginning. She's looking for voice--unique and compelling voice. She's also looking for traffic, and, finally, ideas and concept--something fresh and new that hasn't been out there before.

So, how important is it to have a blog? Kate says "it's a no-brainer"--for marketing and for connecting directly with your audience. Most publishers want you to have a Web page so there are at least links to Amazon, B&N and Borders. Ariel and Gina talked about how having a blog has helped them market their books. Gina included the traffic stats, etc in the book proposal. Lifehacker is a Gawker Media blog, so Gina had the ability to build traffic that way. "So I wasn't touched by God. I was touched by Nick Denton."

She had a mention in the NYT the day her blog launched. Ariel's personal blog is Electrolicious, which inspired her first book Offbeat Bride: Taffeta-Free Alternatives for Independent Brides. Another question: if your work is posted on a blog, is it considered previously published for the book trade? No, but you might just run into a problem of whether there's new material that's not freely available online. Gina said that she did run into that issue with her book--her publisher wanted exclusive content, so it was a "delicate dance" to work it all out.

What about book tours? Ariel calls it an "ego-crumbling" experience, since no one goes to a reading unless they already know who you are. So she did many readings to eight people, "seven of whom were my friends, and the other one was some homeless guy who just wandered in." So Ariel ended up doing her readings...in bars. Her advice? "Have your antidepressants in your pocket."

To find an agent: go to Everyone Who's Anyone in Publishing. And if there's a book you like, look at the acknowledgements--they always thank their literary agent. Another bit of advice: find an inexperienced literary agent. The experienced ones are good, sure, but the new ones NEED your book to make their own career. And publishers love to publish experts. But not just by friends: according to Kate Lee, "You need to be an expert in the larger sphere...try to establish yourself elsewhere."

Final words from Ellen Gerstein, Director of Marketing at Wiley Press: "Look at some publishing industry blogs. There are some great agent blogs, some great puslisher blogs." And "break out of your echo chamber. Think really hard about how you're going to appeal to a broader audience."

Oh and you would expect that lifehacking goddess Gina would turn her personal experience into something practical we can all use: she wrote the definitive piece on turning your blog into a book. Check it out, and good luck!

This post also appears on my personal blog, The Family Room.

SV Moms in 7X7!

Breaking news (I've always wanted to say that!): The "Cyber Patrol" section of the August issue of 7X7 Magazine has a feature on parenting blogs, featuring our very own SV Moms Blog, Stefania's City MaMa,Charlene's CrazedParent, (and, in the interest of full disclosure) my blog, The Family Room.  Great timing on the first day of BlogHer!

Good Clean Fun

One of the odd side effects of having a child on the autism spectrum is that it's actually a little contagious.  By which I mean that, if part of the compact of parenthood is learning to see things through a child's eyes, having a child who sees things differently means that you will probably start to change your perspective too.  Lately, my four-year-old has become deeply interested in several things: numbers, transportation, and the song "Do-Re-Mi" from The Sound of Music, the combination of which can make for a fun, if quirky, day out. 

On Sunday, our little family embarked on one of Isaac's favorite walks: from our house to the "F" streetcar, which has become almost like a family friend.  We trudged over hills, counting out street numbers and buses, humming the theme to "The Pink Panther" (a new favorite) and looking for different-colored houses.  Near Oak Street, we passed a group of 20-somethings, all garbed for some reason in combinations of red and black, one girl in bright red fishnets, shorts, a tee shirt and...kitten ears.  We sang "Do-Re-Mi" several hundred times, complete with Isaac's new lyrics: "Do a deer, a female deer. Re, a drop of Golden Gate Bridge..."  When we got to the Castro, Isaac walked straight into Hot Cookie, where he decided on a small chocolate chip cookie and thankfully missed the more, shall we say, fanciful (think anatomically correct) confections on display.   

From there, we got onto the orange F streetcar, still sporting signs from its previous life in Milan (my favorite being "Vietato Sputare," or "Spitting is Prohibited").  We sat, happily jammed between a group of Castro residents and a boisterous family of tourists on their way to Fisherman's Wharf.   Despite a few tantrum-y moments, it was a great day, and all told we probably spent $10: $3 for bus fare, $4 for bottled water, and $3 for cookies.  Next on our list: miniature golf.  Any recommendations down the Peninsula?

You'll Have Some Cake!

I took the day off from work Friday and devoted it to family time.  Took Isaac to school in the morning to find that one of his teachers was at a doctor's appointment and they were a little short-staffed. So I stuck around with Isaac, read Harold and The Purple Crayon twice, and, when he was ready, we made our way to the table with the other kids.  There were four trays, each with a selection of magnetized objects: balls, colored discs, metallic bits of different shapes and sizes, and big magnetized paddles to pick it all up with.  We contented ourselves with making long strings of magnet balls and arranging them into the shapes of numbers and letters--big fun. 

Soon a couple of the other kids got into the game, and I found myself becoming the impromptu ringleader.  "A., that's beautiful! Let's see how big we can make it.  Isaac, what number does this look like?  E, that's great--uh-oh, it all fell down!  Let's start again."  Smiles all around, so lovely to be surrounded by all these kids, so good for the soul.

***

When I got home, my dad was waiting on the front steps.  I'd invited him to visit for some father-daughter time and see Isaac's therapies, since he's always been curious about what they are like. When it was time, we picked up Isaac at school and took him over to occupational therapy.  He usually is a little more distracted when I'm there, because I don't get to go very often [cue the working mother guilt].  So he was a bit oppositional at the beginning, but then mellowed a bit and showed us how he's learned to jump with both feet, do an obstacle course, cut with scissors, swing a little on the trapeze.  It's all so simple and elemental, but I felt myself cheering him on like it was the Olympics. [One of the unexpected gifts of this experience: it really makes you appreciate the little victories.]

***

At dinner last night, J., my dad and I were doing a little reminiscing, and J. recalled the time we went to visit my then 96, 97 or 98 year-old great aunt Grace (birth records not being very reliable in those days) in her apartment in Brooklyn. J. was in the early throes of a nasty flu, and, sick as he was, he braved the experience like a trouper.  At the time, she was still living on her own with the assistance of a part-time aide, and she received us into her apartment with all the old-world rules still intact.

"You'll have some cake," she commanded my poor, bilious then-boyfriend the second he crossed the threshold.

"Thanks, Aunt Grace, but I'm feeling a little under the weather." 

She didn't miss a beat.  "You'll have some ice cream." 

After more than 80 years in this country, her thick Romanian accent was still largely untouched. J.'s impression of Grace sounded a lot more like Patty and Selma Bouvier [Marge Simpson's chainsmoking sisters, for you non Simpsons fans] than my aunt, but we all laughed anyway. 

And then Isaac, who had been sitting quietly in Jesse's lap, piped up in his best gravelly monster voice, "You'll have some cake!"  And we all broke up.  And then, the magical bit: he looked around the table at each of us, and when he was satisfied that all of us were laughing at his joke, he just...beamed.

[This piece is also posted on my personal blog, The Family Room.]

Let's Call a Truce in the Autism Wars

If you haven't seen yesterday's New York Times piece on the very public rift between Bob and Suzanne Wright, founders of Autism Speaks, and their daughter Katie, whose son Christian has autism, it's a sobering read.  I received the link from a few friends yesterday, all of whom suggested that as the parent of a child on the spectrum I might have something useful to say. But here's the thing: I've been following this story for a while now, queasily watching the Google alerts pile up in my email box, and I'm no closer to any kind of perspective than I was at the beginning.  But I am certain of one thing: this story is well past the point where taking a position is anything other than (in the immortal words of David Bowie), "putting out fire with gasoline." 

What I can say--what I want to say--is that if you suspend judgment for a moment on the arguments and the experts and the celebrities and the posturing and the statistics, what's left is very simple and very stark: a lot of families in a lot of pain, trying to do what they believe to be right for their kids.  I don't pretend to have answers--I'm as much in the dark as everyone else who is navigating this crazy journey.  But I do have one rule: when I put my son to bed at night, I try not to think much about what it is that caused him to be different.  I just love him, the essence of him, and whether or not he can put it into words, I want him to feel it in his bones as he drops off to sleep. 

Note: this piece is cross-posted on my personal blog, The Family Room.

A Tiny Trick of the Light

My son has discovered the kaleidoscope. No surprise, really, that he'd love it, turning it this way and that to see how the light and the shapes change. It's fundamentally appealing, this idea that if we shift our view just the tiniest bit, we can see something different and unexpected.

Daily life works kind of the same way. He is a different kid at school versus at home, at the grocery store and around town versus new environments. At home he's generally sunny, more verbal, open and engaged, while at school he can be quieter, more withdrawn, harder to reach. Out in the world, he tends to be curious and energetic and generally excited to see new things among the familiar (a ferry! a fountain! a bridge! a tunnel!) A little shift in scene, a big shift in mood, a different boy.

This afternoon, at his request, I took him across a bridge, through a tunnel and to Sausalito. I had had visions of a companionable afternoon spent meandering among the tourists, stopping for a slice of pizza and an ice-cream, throwing a few pennies in a fountain together before getting back in the car, back through the tunnel, back over the bridge, back home to Daddy. Not quite.

Now for the pop quiz: In retrospect, I should have: a) planned this outing for the morning, when he'd be fresher b) given him lunch first and foregone the pizza idea, lovely though it was c) gone to the ATM BEFORE we left the city (the reason for this will become clearer in a moment) d) stopped with the expectations already e) a, c and d f) all of the above The correct answer is either "E" or "F", depending on your particular pain threshold.

Here's what happened: Much enjoyment at the crossing of the bridge, followed by delight at the rainbow tunnel, followed first by mild-moving-to-extreme disagreement about stopping and parking the car, followed by lengthy full-scale meltdown, falling to the sidewalk screaming (I couldn't bear to raise my eyes to see if we were attracting compassionate or judgmental stares--or both), followed by brief respite involving eight pennies and one fountain, followed by slight improvement upon news that a bagel might be imminent, followed by extreme disappointment that trip to ATM preceded bagel, followed by agreement that slice of pizza would be better than bagel, followed by loud disagreement about washing hands in narrow eight-table pizza cafe (to kind and knowing looks by proprietors), followed by immediate satisfaction and calm upon receiving first a glass of milk, then a slice of pizza (thoughtfully cut up into child-sized pieces), followed by smiles and sweetness and quiet munching. As he was closing in on the last few bites of pizza, an older English couple came in and sat across from us. I caught the woman's eye and said, "Believe it or not, he was a screaming maniac about a half-hour ago." She smiled gently. "That's funny, I was just thinking what a well-behaved little angel he was." I thanked her, and we left.

On the way back, he asked if we could go into a toy store, where he picked out a replica cable-car as a souvenir. He held my hand peacefully as we walked back to the car. Now, for extra credit: was it "autistic" rigidity? Simple hunger? A combination? To find the answer, I guess we need to take a deep breath, shift the kaleidoscope and try again.

This piece is also posted at my personal blog, The Family Room.

Potty Training, Part Deux

Several months ago, we began the bizarre and weirdly emotional process of potty training our son.  We bought pull-ups, we collected whimsical potty books, we got detailed instructions and excel spreadsheets from our ABA team (for data collection) and a plastic bucket (for...).  We loaded up on fun DVDs he can watch during potty sessions.  He learned the steps quickly: he loved sitting on the potty, loved flushing, loved the ritual of washing and drying his hands, even loved his potty seat, proudly carrying it around the house, but...no luck.

Fast-forward a few months (okay, several months) and we are being politely but firmly encouraged to try this again.  Again we have the spreadsheets, the paraphernalia, and on Saturday I went to buy my boy his very first set of big kid underpants.  And I have to tell you, I felt a little emotional standing there at the display.  Do I get colors?  White?  Dinosaurs?  Superman?  (In the interest of protecting whatever shred of privacy is left at this point, I leave that to your imagination, dear reader.)

During his bath that night, he played with a green plastic dolphin, filling it with water and letting the water run out into the tub.  Then he looked up at me and said: "The dolphin has to go pee-pee," and emptied it into the tub again, giggling.  Yesterday, my husband came home to a whole potty convention in our house, including one ABA tutor, one school district case manager, our nanny and, of course, the life of the party himself, who was looking a little grumpy by this point.  Then this morning, as soon as he woke up, he demanded to sit on the potty again, where he ate a banana, drank a glass of milk, and happily watched an episode and a half of Harold and the Purple Crayon (delaying my shower and causing a Very Bad Hair Day).  And I suddenly realized: the bathroom has become his new office.  And I can't help but wonder: how did we do this stuff before there were specialists, and Microsoft Excel, and DVDs and cheese crackers and--honestly--does it really take a village to potty train a child?   

Note: The above is cross-posted on my personal blog, The Family Room -SE.

What's So Special About Special Needs? (Or: I'm Down with PDD)

So maybe you have a child--or know a child--with what we so fondly call "special needs." Maybe you saw the Oprah show on autism last week (or, not to be outdone, the immediate re-broadcast of an autism-related show on The View). Maybe your kid, or one of your kid's friends, has been diagnosed with autism, PDD-NOS, Asperger's syndrome, sensory integration disorder, or just..."issues." Or maybe you have absolutely zero degrees of Kevin Bacon with autism or any of its distant cousins. If so, can I call you?  And, by the way, have you heard that it's Autism Awareness Month?

Yes, I do have a point. Awareness is good, awareness is helpful. Awareness raises funds for research, services and support for people who desperately need them. But that's only half the story. It's not just that autism must be treated and, we hope, cured some day. We have to learn to live with it too--to understand it, to work around and with it--even to find the unexpected joy in it. And I can tell you from first-hand experience: there is joy. Not "consolation prize" joy, but real joy and delight in watching a different mind work, and total exhilaration when your kid does something new and unexpected. I didn't get to see the Oprah episode, but what I've heard from many other parents of kids on the autism spectrum was how...depressing it was. Does that surprise you? These are people who probably experience more pain, on balance, than many parents. But "painful" and "depressing" are two different things. And while "depressing" helps raise funds, it doesn't serve the real people who are living with autism every day. We want something else, and this is probably harder: to be a little less special, actually.

There's a woman named Vicki Forman who writes a column called Special Needs Mama in the online magazine Literary Mama. A while back, she wrote an amazing piece called "The Mother at the Swings" about the moms who would see her at the playground with her son and who so clearly wanted to know "what it's like, how my son is different, and how he is the same." Before we knew about Isaac, I was that mother at the swings. I wanted to know all those things, and I had absolutely no idea how to ask. Now that the shoe's on the other foot, I've learned that it's sometimes much harder to ask than to tell. So I'll make a deal with you: if you see me at the swings with my son, and you ask me what it's like, I will tell you. And I think that we, and our kids, will be the better for it.  

BTW: if you are a parent of a special needs child and you're looking for help on how to get the most out of the IEP process, check out this interview I posted yesterday on my blog, The Family Room.

Mojitos and Milk

My sister used to joke that our mother gave birth to us in a boxy little tweed suit, with a cigarette in one hand and a martini in the other.  When we were small, she would dash off, ruthlessly coiffed, to any number of glamorous social events, leaving us in the care of an elderly Irish babysitter who gave us milky tea late at night if we were unable to sleep.  (It didn't work very well, for reasons that are now much clearer.) 

Fast-forward 30-plus years and there I was, all grown up and making long and solemn promises about the parent I was about to be.  I would be a pure and organic pregnant woman.  I would not touch alcohol.  I would eat no processed food.  I would be a temple.  I would do nothing to jinx the precious, improbable child growing inside me.  And I would be a loving, nurturing, but never overprotective parent. (Are you nauseous yet? I've gotten over myself, I promise.)  All grand plans aside, it was a bit of a shock, this parenthood thing.  It took me a while to realize how much crap I had internalized about being a mother (cloth diapers? no TV? Was I insane?) and figure out what I really, REALLY cared about, and what kind of person I was going to be, now that I was a mother. 

So I had a sort of ambivalent reaction to the cover story in Sunday's SF Chron pink sheet: "Rockin' with Kids."  It's about a hot new trend in San Francisco: taking your kids to bars.  In case you missed it: we Boomers and X'ers, having rejected the strict boundaries of our childhoods in the 60s and 70s and the horrible kid culture of the 80s and 90s, are now happily embracing a new paradigm: hipster parenthood. (Read David Brooks' hilarious OpEd in the NYT a few weeks back).  In San Francisco, this translates to "Strollerbar" and "Tots and Tonic" nights at local bars, in which parents can rock out alongside their kids while they sip, respectively, mojitos and milk.  (Unintentionally hilarious moment in the Chron article: one regular bar-goer, irate at the number of strollers outside Vino Rosso on "Wine and Whiners" night, claims that "for the cost of a nice glass of wine, you can get a babysitter for two hours."  Well sure, if the wine in question is Opus One.  Or you hire a six-year-old to watch your four-year-old.)

I don't mean to be sanctimonious here.  I love mojitos.  I love Dan Zanes and The Sippy Cups.  I miss going out more often.  But as much as I would love to hang on to whatever shred remains of my younger, cooler self, putting alcohol in the mix is just stupid.  (Nevermind the thought of changing a diaper in a bar bathroom.  Eeeew.) And somehow I really doubt that when Isaac is 17 and mad at me for simply breathing, he'll be asking: "Mom, when I was little, why didn't you take me clubbing more often?" 

To Label, or Not to Label (That is the %$@%! Question)

There's a wonderful service in Ontario, Canada called Mabel's Labels. Log on, pick your color and design, give them your address and credit card number, and several days later you get a cute envelope with a bunch of labels in it: round ones for shoes, iron-on ones for clothes, sticky rectangular ones for sippy cups, toys, and the critically-important detritus of daily life. I love those labels. I bought them when Isaac was just entering preschool last year, and I spent a whole Sunday afternoon labeling, secure in the knowledge that I was carrying on a revered family tradition, that whatever parenting mistakes I make (and make and make and make again), this was unarguably a VERY GOOD THING. I felt like a very admirable, very organized sort of mommy. And then preschool actually started, and my ideas about what it would be like: fingerpaint messes, wet, sticky valentines, learning to ride the trike, playdates with the other kids (and their moms--we would become great pals!) started to crumble. What we had thought of as a simple speech delay (we have a lot of shy, bookish boys in my family) suddenly looked different, and worrisome. Isaac didn't play with the other kids. He didn't talk. He ran away when all the kids were together. And we were confronted with a choice about a different kind of label.

Skeptical grumps that we are, my husband and I resisted the label as long and as hard as we could. He's just shy. He's just late to talk. He's just sensitive to loud noise. He's just independent. He just prefers adults. All true of Isaac, all true of many kids, all possibly nothing or, you know, that thing. One night I was invited to a going-away party for a Floortime therapist who had been working with Isaac. She was very helpful in pinpointing some of his challenges and guiding us to a better understanding of how he experiences the world. And as I stood there, nervously nibbling hors d'euvres, I chatted with some of the other mothers: "Here's a photo of my son," one said. It showed a beautiful boy of about six, his hair a mess of gold ringlets, smiling goofily at something off-camera. "I let him grow his hair long. He hates haircuts, and, anyway, we have to work with his strengths." And it hit me: somehow, without meaning to, I have joined a club. As soon as was feasible and polite, I went home.

There's a great blog called Autismland by Kristina Chew. That word completely describes how I felt that night: as if I had been driving down a dark road, feeling anxious and lost, when I spied a sign: "Now Entering Autismland." It was simultaneously reassuring and terrifying. Since that night, about a year and a half ago, I've bounced back and forth between a certain uneasy acceptance and fierce rejection of that word. Isaac isn't technically "autistic": his diagnosis, should we decide to accept it, is blessedly on the milder end of things.

But, as anyone who has gone through something like this knows, you have to sign on the dotted line below THAT WORD to get the services you need. To help your child, you have to accept the label.  But there's acceptance, and there's acceptance, right?  Battles are waged, victors declared and maps redrawn all the time.  My take for now: this is a point in time.  Even if today we are are standing in the middle of downtown Autismland,  maybe, with the right help, we can find our way out.  I believe we can.

Newsflash: Rain Causes Autism

Excuse me while I try to control my knee-jerk reaction to today’s front-page Wall Street Journal article Is an Economist Qualified To Solve Puzzle of Autism? In a nutshell: Cornell University economist Michael Waldman noticed a correlation between rain and snow in Oregon, California and Washington:

The more it rained or snowed, the more likely children were to be diagnosed with autism.This realization soon led Prof. Waldman to conclude that something children do more during rain or snow -- perhaps watching television -- must influence autism.

I encourage you to read the article to get the whole story (plus a great tutorial on instrumental variables research--who knew?) and draw your own conclusions. In the meantime, allow me to point out a few data points of my own:

......................

1. The prevalence and mysteriousness of a particular disorder correlates strongly with the number of experts, from whatever field, who have all the answers.
2. The more prevalent and mysterious a certain disorder, the sexier, from a professional standpoint. Nobody is going to win a Nobel Prize for curing toe fungus.
3. Over time, you can probably predict the pendulum swings between nurture (bad parenting, TV watching, diet) and nature (genetics) to explain autism and a host of other medical conditions.  Nurture always gets more play, because, let's face it--blaming people is more fun.
4. By my calculations, the more time a child, autistic or not, spends watching TV, the less time he or she is in fact interacting meaningfully with other people. Tell me I’m wrong here--TV may or may not be a factor in causing autism, but human contact sure is when it comes to helping autistic children develop meaningful relationships.
5. Has anyone else found a sample size of one, even if he is the child of a renowned economist, to be statistically valid? I watched a lot of Flintstones as a child growing up in New York. Case closed.

I'll leave it to you to debate the finer points, but here is my conclusion: if you don't like someone else's science, go out and make some of your own.

Blessed are the Cheesemakers

Tony Attwood, an internationally-known expert on Asperger's Syndrome, is a smooth guy. He knows how to work a room--how to put 500 anxious mothers (mostly, let's be fair) at ease. He begins his talks with an anecdote about how, when he is lecturing around the world, he plays "Spot the Aspie"--looking for the most likely candidates among his audience. And how, when he's giving a talk in front of a group of software engineers, or mathematicians, say, he looks for the one person in the room who doesn't have Asperger's. (They call us "neurotypicals," by the way, or "NTs." Someone once told me that was the genesis of the name "Windows NT"--Windows so easy, even a neurotypical could use it. But that could be suburban legend. Let me know if you have verifiable info on this.)

Living here in the Bay Area, it's easy to understand why autism is considered a spectrum. This is a place where many of the diagnostic markers--social awkwardness, intense specialization, disinterest in or unusual patterns of communication--are, well, valued. In fact, there was an article in WIRED six years ago that speculated that the reason our autism rates are so high here is that we genetically select for each other.

As the wife of a man who keeps a running tally of the number of minutes he exercises each year and who multiplies large numbers in his head for fun, and the mother of a three-year-old, diagnosed on the spectrum, who likes counting by eleven and thinks that the height of hilarity is to recite Goodnight Moon by replacing the first letter of every word with the letter "D" ("Din de dreat dreen droom..."), I have a profound love and respect for what I can only think of as "neurological diversity."

Where it all nets out, I don't know. But as I drove back to the office the other day after yet another of my son's endless appointments, I heard a story on KQED about a cheesemaker in Somerset, England, who decided to train a Webcam on a wheel of farmhouse cheddar--for an entire year, mind you--so interested parties could watch it ripen. I'm not sure if that's personality, pathology or simply brilliant marketing, and, to be quite honest, I'm not sure I care.