It could have happened anywhere — but it happened in Arizona. And I don’t think that was by accident.

I mean, I did want to figure out whether that Down syndrome Girl episode was funny or not, on its face (general consensus from admittedly biased GIAPH readers: not really) but the truth is that this isn’t about a not-very-funny TV show.

It’s about Sarah Palin. As Stacey eloquently put it in the comments on the previous post, the thing that’s so infuriarting is not that the Family Guy folks decided to make fun of someone with Down syndrome — it’s that they did it to get Sarah Palin’s goat. (For the record, I’m also with Kathleen, who points out thank goodness we live in a country where people can make a not so funny TV show about just about anything, if they want.)

I really don’t see why they didn’t just cut to the chase and make fun of Palin herself, since everyone else does.

I will say here that as someone who also writes reminders on her hand — “milk,” “pay Visa bill,” “call dentist” — I don’t find it at all strange that Mrs. Palin writes crib notes to herself when giving a policy speech as part of her would-be presidential candidacy.

Argh! Don’t you see? This woman and I have way too much in common.

Damn you, Sarah Palin. I don’t want to have anything in common with you. And if you emerge from all this as the Poster Mom for Down syndrome, I’ll be really really really pissed. So far it hasn’t happened – for one thing, I don’t get the impression you’re that interested in the subject —  but you know, it still could. When that whole presidency thing tanks, you’re going to be looking for work. The non-profit world just might beckon. Perish the thought. Hopefully the NRA will be hiring.

Of course, it’s not only about Sarah Palin, either.

Palin aside (again), the Family Guy thing struck a nerve because the whole “Is it okay to make fun of people with Down syndrome” thing has bugged me for years. Is anything about Down syndrome funny? Rather, is it okay if anything about Down syndrome is funny?

Here’s an essay I wrote when Sophie was 2. It’s a little raw. (For one thing, I used the word retarded a lot back then.) I’m not sure I would write it exactly this way today, but that’s what happens when you reach into the time machine. (And apologies if some of this material is retread for regular readers. Bits and pieces might be. Also, it’s really long. Sorry.)

I have come to the conclusion that when you have a retarded kid, you can’t make fun of retarded people.  

 The other day, a guy at work showed up in a tee shirt that said, “Homosexuals are so gay.”

 All day, people pointed and laughed.

 I tried it out on Sophie.

“People with Down syndrome are so retarded.”

 Not funny.

Sophie is only two, so I’m leaving the door open to the possibility that at some point, having a retarded kid might be funny. But for now, it’s not. And that really pisses me off, because I’ve always been the kind of person who tries to look on the sick-joke side of life. I like to think I have a good sense of humor, and it’s grounded, like most funny stuff, in the ability to be self-deprecating. For example, I love a good Jewish joke (as long as it has nothing to do with ovens), and as long as I – or another Jew – am telling it. Even at the height of the politically correct thing, you could still snark on yourself, right? And now that we’re past P.C., the world of comedy is pretty much a free-for-all. It’s so post-modern. The other day I heard a joke I thought was really funny:

What t do you call a black guy who flies a plane?

 A pilot, you racist.

 I told that joke so many times and laughed so hard, that finally my husband, who voted for George W. Bush and is not at all P.C., asked, `What kind of a bigot are you?’ That stopped me cold. I thought that was a joke that made fun of bigots – but maybe not.

It’s all gotten so confusing, and no more so than when it comes to Sophie. It’s not funny to make fun of your kid with Down syndrome. I know; I’ve tried. We took the girls to have their pictures taken with Santa (OK, so I’m not a very good Jew) and in the picture, Sophie looks, well, retarded. I pointed that out to a colleague at work, who looked like he wanted to kill himself. Or me.

I’ve thought about it a lot, and I might have figured it out. It’s not funny to make fun of your retarded kid – or, really, any retarded person – because there’s no way that kid or person will ever be in on the joke. By nature of the exact situation you’re making fun of, they can’t make fun, too. Sure, they’ll laugh along, but will they really get it?

So far, Sophie doesn’t. Of course, that could be because she’s 2. I’m planning to hold out hope. I could use a laugh.

Ever since I had my kids, but particularly since Sophie was born, I feel like someone turned off a filter in my head. Lights are too bright, sounds are too loud. I can’t bear to read a story in the paper about an abused kid, but I can’t tear my eyes away, either.

Before Sophie, it was sad when a kid was sick. Now I can’t watch my formerly favorite guilty pleasure television show, E.R., because I recognize the string of medical terms they’re shouting over a patient. I really try not to feel sorry for myself. Yeah, Sophie had open heart surgery when she was 3 months old, but her heart is OK, now. And yeah, last month she was crying bloody tears after eye surgery, but the surgery was minor, and I sat in the waiting room at Phoenix Childrens Hospital during the 15 minute procedure and watched parents carting their children to chemotherapy in little red wagons and wondered how on earth they find the strength to do that?

So you understand that I can use a little levity in my life. And I want you to have some, too, because I don’t want you to feel sorry for me, or for Sophie. I don’t want you to ask how it’s been on Annabelle, her 4-year-old sister, or how this whole thing is affecting my marriage.

Recently, a guy I work with pulled me aside and said, “Look, a lot of times, in staff meetings, people use the word retarded. Want me to ask them to stop?”

“No,” I replied, honestly. “Please don’t say anything. I don’t even notice it.”

And I hadn’t. But from that day on, I’ve noticed every time anyone, anywhere, has used the word retarded. And then I’ve noticed how often, just afterward, they wince.

Do we have to talk about that? Let’s just have a laugh.

I’m trying. I used to read constantly. I still read, but now it’s usually those horrible parenting magazines or Sandra Boynton books. In the middle of the night, when I can’t sleep, I sneak into the bathroom and read the books I want to read — gobbling them like cookies in the near dark. I love David Sedaris and Augusten Burroughs, mostly because nothing’s off limits for those guys. They make fun of themselves, and they make fun of everyone else. But one night, I had to come to terms with the fact that I can’t handle that anymore.

I was reading Burroughs’ latest book, a collection of essays, and I came to one that delved into one of his favorite topics, cruising at bars, and he recounted a tale a friend told him about going out drunk and picking up a guy, waking up the next morning and realizing, to his horror, that his conquest had Down syndrome.

Perched on the toilet (don’t worry, the seat was down. Between two dogs, two cats, two kids and a husband, I don’t have anyplace to sit and read quietly anymore) I thought I was going to vomit. I put the book down and climbed into bed, and lay there and thought, `Well, at least that guy with Down syndrome was high functioning enough to go out to a bar by himself. And to know he was gay. That’s something.’

That’s not enough for a person – me – who two years ago would have howled at the image of Augusten Burroughs’ friend realizing he fucked a retard.

And that’s part of it. Not only is that stuff not funny anymore, but I sicken myself at the thought that it ever was funny to me. What kind of a horrible excuse for a human being am I?

Wait. It gets worse.

When Sophie was about two weeks old, I suddenly remembered “Pink Slip.” “Pink Slip” is an instructional video made in the 70s. Dead serious at the time, but now a joke making the rounds on the Internet. A friend of mine got a copy years ago and we watched it again and again and howled. I’d never known anyone with Down syndrome. (I didn’t even watch that show with Corky in it.)  I’m not even sure I knew that Jill, the main character in the video, had it – just that she was kind of slow. The video portrays Jill’s entire family – in incredible detail, including her father  – teaching Jill about her period. It even includes a scene in which Susie, Jill’s older sister, pulls down her pants to reveal her own thick maxi-pad.

Shit, I thought, staring at my new baby. I’m going to have to get a copy of “Pink Slip” for myself when Sophie hits puberty.

I know I’m supposed to completely change my personality, now that I have a kid with Down syndrome. I’m to take pleasure in life’s simple joys, as revealed to me in Sophie’s beautiful smile. And it is beautiful, and she does bring me a kind of happiness I never knew existed, which is what parents of kids with Down syndrome always tell you. It’s true, I’m not trying to discount it. I’m just trying to figure out how to handle all that joy, and still have a laugh.

The second part of my series “The Lost Kids” is out this week.

The day before the story came out, a Facebook friend across the country posted a really beautiful quote from “A Prayer for Owen Meaney” by John Irving.

I found it an odd coincidence.

The story of Cynthia Clark Harvey’s struggle to get her mentally ill daughter help has haunted me for years. I finally decided this fall that I could disclose the conflict of interest that was keeping me from writing about Erica (Cynthia and I have been in writing classes and groups together) and help her mother get the message out about how dangerous wilderness-therapy camps can be.

Erica died during a hike on her very first day at one of those camps in 2002.  

When we sat down for a formal interview, Cynthia mentioned that in the months preceeding Erica’s death, she had often read to Erica at night when she couldn’t sleep. One of the books she read to her was “A Prayer for Owen Meaney.”

Here’s the quote my FB friend posted. I don’t even know the woman well enough to ask why she posted it. But I’m glad she did.

When someone you love dies, and you’re not expecting it, you don’t lose her all at once; you lose her in pieces over a long time – the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes – when there’s a particular missing part that overwhelms you with the feeling that she’s gone, forever – there comes another day, and another specifically missing part.

You know that Bare Naked Ladies song “If I Had a Million Dollars?”

Well, if I had a million dollars, I’d spend it the way Maxine and Jonathan Marshall did. Their Marshall Fund brings smart book authors and well-versed poets to town on a regular basis. And twice a year, the butterflies come, too.

The butterfly pavilion at Phoenix’s Desert Botanical Garden is among my favorite places in town. Yesterday the girls and I met our dear friend Trish there — and while we didn’t have nearly enough time to enjoy everything the garden has to offer, since I screwed up and had to whisk Annabelle away to dance rehearsal — we did spend a hunk of time with some enormous monarch butterflies.

I looked at the sign in the butterfly pavilion as I always do, and silently thanked the Marshalls. And I thought about Jonathan, who died earlier this year. He was one of my earliest heroes, the owner and editor of the Scottsdale Daily Progress, my hometown newspaper. He was a liberal among conservatives, an opinionated guy. Wicked smart.

By the time I finished grad school and applied for my first newspaper job, the Marshalls had sold the Progress — after that, it was never the paper it once was, suffering multiple big owners and eventually shutting its doors, gobbled by its parent company – but I was still proud to work there. And even prouder when I was invited to join a “multi-generational” book club that included Maxine among its members. We often met at the Marshalls’ home.

Yesterday was Day of the Dead, and the garden had a big party. Fitting.

And too fitting for my taste is the news just this morning of another death. The East Valley Tribune, Phoenix’s “second” daily newspaper (the Arizona Republic is the first), is closing.

Jonathan Marshall wouldn’t be pleased about that at all.

The other day I had lunch with two dear girlfriends I don’t get to see very often, women I met once I moved back to Phoenix. We talked about recent purchases at Last Chance, recent travels, and recent blog posts.

“Wow, you’re so brave!” one remarked over the post about Sophie’s experience at birthday parties and mine in high school that I’d put up earlier in the week.

Nah, I told her. Writing that piece wasn’t brave. But posting it on my Facebook page was.

Or maybe it was just dumb. Or even a little mean.

The truth is usually a little more complicated than a blog post. And when I started getting emails from classmates apologizing for being mean (if they were — they didn’t recall any incidents but wanted to say sorry just in case) and also some from others recalling good times we did have together in high school, I realized that although I did toss in a parenthetical about how I did in fact have some friends in high school, I probably shouldn’t have gone so far in general, in comparing my situation to Sophie’s.

Not that the comparison is wholly inaccurate.

The emails were fascinating. One classmate who would have been considered part of the “popular” crowd in high school admitted she hadn’t used the word geek in years, but thought it when she saw some of our nerdier classmates at the reunion, and was a little horrified at herself.

Another wrote something really lovely that he gave me permission to repost here. (He also told me I could rewrite it if I thought it needed it, which it most certainly does not.)

This is a guy who always struck me, looking back, as comfortable in his own skin — the thing I never was. Friendly to others (including to me, he reminded me we were on the school newspaper together, something I’d frankly forgotten) and an all around nice guy; Class Clown meets Guy Next Door. Certainly not someone I had the luck of hanging around with. 

I read your post, this guy wrote me on Facebook.

I too, was going to blow off the reunion as I didn’t feel like sharing the past 34 months of divorce, foreclosure, failure and insanity with my classmates. I went anyway, and it turned out to be fun in some ways, predictable in others, but in the end, another party. The difference this time was: At our 10 year reunion, we were still climbing, at our 20, it was more of a parade of things we had accomplished, at this one, it was an admission of “who the fuck cares” …. and if you remember my personality at all, this reunion was the most fitting for my C+ student, but socially functional brain to handle. If it wasn’t for football and dating [a cute cheerleader] as a sophomore, I don’t think I would have been a memory for many. It’s funny how all have our isolated defining moments, and really, it’s all front page news in our own brains, nothing more. Here today, gone tomorrow as something else takes it’s place and the water subsides, ripples come to an end. Narcissism continues and people fade into the soap operas of their lives that only exist between their own two ears.

Now that was a brave email to write. So was the one from the popular girl with the geek story.

The complicated truth — or part of it, anyway — is that I still have a lot to learn from Sophie. No, I wasn’t popular in high school. But even so, I had classmates I, too, deemed too geeky to befriend. I thought of that as I looked at pictures of the reunion someone posted on Facebook. I guess high school really is just one big hierarchy, a la The Breakfast Club.

It’s not that Sophie will befriend just anyone (I see her give the heave ho to people all the time, particularly doting adults) but she’d never turn someone down for being a geek. And, unlike her mother, she doesn’t hold a grudge.

This morning, Annabelle was balancing her cake for the cake walk carefully as we walked from the car to school, slower than the other groups. (OK, here’s a digression — how could anyone not know what a cake walk is?! Ms. X graciously provided a super explanation.)

As we headed toward school, I saw the future “bitchy student body president” and her dad, ahead of us on the sidewalk. I noticed the girl turn around, look at Sophie, sneer a bit, toss her head in the air and literally skip away. I wanted to catch up with that little girl and trip her. Sophie didn’t even notice.

 We got to school and Annabelle showed off her cake, and I forgot all about it. Sort of. I better not see that girl at the school carnival tonight. And no, I can already tell you that I’m not going to my 30th high school reunion.

 Not brave enough.

I don’t know if the latter will hold true, but the former certainly is. Sophie’s entire class is invited to her birthday party tomorrow. No matter what she tells you.

Yesterday afternoon — after the local NPR commentary I did about her birthday was long in the can — my friend Vicki (mother of Anyssa, a classmate of Sophie’s) texted after school:

So, I talked to your daughter and asked her what she wanted for her birthday and she told me that I couldn’t go to her party and I asked her why? And she said because I was a boy! But it’s ok for Anyssa to go! But she gave me a kiss said bye!

Whoops. Someone clearly needed to have another talk with Sophie. In fact, I better go. I see that Ms. X just called.

http://kjzz.org/news/arizona/archives/200905/sofiesbirthday

Yeah, I don’t understand it either. Maybe State Senator Linda Gray would care to explain. I try not to directly mix work in with Girl in a Party Hat very often, but check out the post on Phoenix New Times’ blog today about a letter Gray wrote in response to a high school student who had the audacity (in Gray’s view) to write to her questioning the state’s decision to cut education funding:

http://blogs.phoenixnewtimes.com/valleyfever/2009/03/senator_linda_gray_apologizes.php#comments

Be sure to click on the blog post after that, where Gray apologizes and reveals that the student is special needs. What’s Linda Gray’s excuse?

Arizona is a great place to be a journalist (you can’t make this shit up) but it can be a really lousy place to be a human being.

It’s not a completely unpleasant sensation, which is good, since I’m not sure how long it will last. I do know how it started. I knew better than to agree to ride Mulholland Madness — a roller coaster my husband describes as a “baby ride,” but definitely the most intense one I’ve been on since a bad Space Mountain experience in college — but Annabelle’s face lit up when she suggested it and I agreed.

This was our fourth trip to Disneyland as a foursome. It’s an interesting way to mark both girls’ growth. The first year, Sophie wasn’t walking, and Annabelle was too short for any of the rides. Last year, Sophie wasn’t potty trained, so each time we met a character, I asked the character whether he/she/it used the potty. Some didn’t appreciate the question, but most played along. (Looking back, I sort of can’t believe I did that. Hey, desperate times call for desperate measures. For whatever reason, Sophie was potty trained by the end of the following week.)

This year, tastes definitely had changed. There are still rides girls both want to do, but Sophie’s not tall enough for the roller coasters. And this time, Annabelle wasn’t into the princesses, so I took her to stand in line for Tinkerbell and the other fairies while Ray and Sophie waited for Snow White. (I have no idea where the Snow White obsession came from — and no, I don’t think it has anything to do with Dopey! More on him later, I hope; I have some requests out to fairy tale experts to try to get to the bottom of this.)

For much of the trip, Ray and Annabelle teamed up for the big kid rides, while Sophie and I waited for Pooh and Tigger, or partied in the Tiki Room. The last day we tried to mix it up, and in our final moments, I really threw caution to the wind and got on that roller coaster.

“Don’t worry, Mommy, you can hold my hand,” Annabelle said, advising me to keep my eyes shut and announcing the big drops are “yummy” when I casually mentioned afterward that they’re not really my thing.

So it was worth it. But I’m having a little trouble concentrating today. Back and forth, back and forth, back and forth.

Wait, where was I?

I knew it would be a good trip when we walked into the park and the first thing we saw was Mickey Mouse wearing a party hat. There were party hats everywhere — teeny tiny hats on top of this year’s edition of the mouse ears; big upside down hats filled with flowers, decorating the lamp posts on Main Street; hats on the popcorn boxes, cups, paper napkins.

Sweet.

This year we were, at times, part of a large group of various friends – including Sophie’s Ms. X! — which sometimes presented challenges (have you ever tried to make a decision at Disneyland with 12 people in your party?) but ultimately made it a much better trip. Our little family tried a lot of things we hadn’t tried before.

But time was short, and we found ourselves rushing to cover our favorite bases. By the end of the second day, I was in a mood so crappy even a margarita (yes, they sell booze at California Adventure, the park next to Disneyland — very good to know) didn’t make a dent as I rushed to get Sophie over to the last performance of the day of Playhouse Disney.

Now, part of this, I know, was because of The Game. Ray and I have played it since our first trip — I wrote about it in the Tomorrowland piece I posted the other day. We keep an eye out for people with Down syndrome. As I wrote earlier, the Happiest Place on Earth attracts the (allegedly) Happiest People on Earth.

When you refuse to join a support group, you do a lot of surreptitious staring. I know this is not healthy. But I do it anyhow. Ray and I agreed this time that we don’t stare as hard anymore; as Sophie gets older, it becomes easier to imagine the adult she’ll be. But still, walking through the park, Ray would call out, “Hey, hon! Two o’clock!” And I’d rubberneck to check out our possible future, dressed in a red sweater with bobbed hair.

I’d only seen a few people with DS so far (attendance was clearly down overall at Disneyland this year — even Mickey’s not recession-proof, I guess) but while Sophie and I were waiting outside the Tiki Room, I had noticed an older woman with what were obviously her twin sons; both had Down syndrome, and both appeared to be fairly low functioning. The situation looked pretty grim, and I admit that it put me in a funk for a while.

Sophie, on the other hand, was all smiles. And she’s developed a little habit I’m not so fond of — randomly hugging strangers. For the most part, the strangers love it. I wanted to strangle the middle-aged woman who actually picked my daughter up and held her as I struggled to get her back; I know people are just trying to be nice, but hasn’t anyone else ever had to teach a child about Stranger Danger?)

By the time Sophie jumped out of the stroller and ran to hug a Playhouse Disney employee named Heather, I’d pretty much given up on stopping the hugs, as long as the person looked safe. (And don’t worry, I wasn’t drunk. I’d had way too much soft pretzel to catch a buzz.)

Heather was thrilled. She and Sophie chatted for a while, then I turned to get in the now-substantial line.

“Hey,” Heather said, “why don’t you and Sophie come inside the white rope?” This was clearly the “preferred seating” area. Or, as I silently and instantly named it, the “f-ed up kid” area. Another woman was already waiting there with her kids — I eyed them, trying to figure out which one had the diagnosis, and what it was. My heart sank for a minute, but I couldn’t deprive Sophie a front row, center seat — which I was pretty sure we’d get. (We did.) 

Still, it was a little weird when Heather called all of her fellow employees over one by one to meet Sophie, who was now standing behind the white rope, sort of like she was — well, sort of like she was in the zoo. “Look! Look! This is my friend Sophie!” Heather said, and Sophie obliged by hugging everyone.

I was beginning to wish I’d been the one to take Annabelle on California Screaming. (Turned out she was still too short for that one, she never made it on.) But Sophie was having a ball. We saw the show, she was thrilled, and I had to admit that it was nice to get preferred seating.

As we were walking out, Heather stopped us and offered to get Sophie and me into the VIP area for the parade, which was about to start.

“OK,” I said, “that would be great. But, um, we’ve got a party of 12.”

She said that was fine. It made think of the time the ranger at the Petrified Forest told us Sophie and her family can get into all the national parks free, for life, explaining when I turned her down that it meant families would never leave their disabled loved one at home.

For the record, I’d bring Sophie to Disneyland any day, VIP section or not. But it was pretty nice to be able to call Ray and say, “Hey, tell everyone to head on over! Wait til you see what Sophie got us!”

Sophie was oblivious. She was looking for more hugs. While we waited for Ray et al, she spotted another Playhouse Disney employee, and ran up for a hug.

This one was not much taller than Sophie. His name was Teo; he’s a little person. (I swear, I’m not making this up. I know, I was just writing about midgets and dwarfs!)

“How old are you?” Teo asked Sophie.

“Five,” she answered. “Are you five, too?”

Teo looked sad. “No, I know I look like I’m five,” he answered. “But I’m not.”

Sophie hugged him again.

It was one of those magical southern California days with bright sun and a cool breeze, and the parade was short but sweet, with all the Pixar characters. Sophie was really excited. We all were.

After the parade, both Heather and Teo came over to see if we’d had fun. They both admitted they’d had really rotten days (“My first bad day at Disneyland in three years!” Heather said. Turned out that other mom and her kid had been nasty to Heather earlier, which is why they were getting preferred seating.) and when I tried to thank them, insisted that Sophie deserved all the thanks.

I felt my bad mood melt away.

We left Heather and Teo (after several more hugs) and headed back to Disneyland for a few more rides, realizing we were all tall enough to ride the cars at Autotopia.

Standing in line, I spotted an older guy with Down syndrome. He was with another man; I don’t think he had DS but maybe some other kind of developmental disability.

I couldn’t stop staring at the guy with DS, and not because I was worried about Sophie’s future. To the contrary. I couldn’t hear what he was saying, but this guy in his cardigan and jeans looked so confident, so content, so wise, standing there chatting with his friend. I had this weird, overpowering sensation that I was staring at the smartest person at Disneyland.

I wanted to talk to him, or at least try to overhear his conversation, even though that’s not typically part of The Game. But it was our turn in line. So instead, we got in our little cars and sped away.