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 other day, I was perusing the Etsy shop of one of my all-time favorite artists, she of Girl in a Party Hat “fame,” Amanda Blake, and realized I didn’t have any of her boys.

Now I do. Oliver arrived just the other day, wrapped thusly (how freakin’ cute is that?!) and as it’s a Gocco print rather than the pricier paintings I truly crave, he was an insanely affordable $10.

Run, don’t walk. I see more Olivers in Amanda’s shop, along with the breathtaking painting “caroline carefully arranges all she holds dear”.

And now for a commercial announcement.

The Scottsdale Arts Festival is sweatily underway (my car thermometer insists it’s over 90 degrees this afternoon) in — you guessed it — Scottsdale.

Years ago, I found one of my now-favorite artists at the festival: Amanda Blake, creator of the beautiful artwork that graces this blog and inspired its name.

She’ll be in Scottsdale again this weekend — today, tomorrow and Sunday. For details, go to www.scottsdaleartsfestival.org. Or to see more of Amanda’s art and buy it online, go to www.amandablakeart.com

The Scottsdale festival’s one of the largest around, and while you will see a lot of the stuff that makes these festivals bad (ceramic Kleenex box holder, anyone?) it’s got some of the best art I’ve seen in such a venue. Also, there is always a super craft area for the kids.

We now return you to your regularly scheduled Web surfing and wish you a happy, air conditioned weekend.

I didn’t know what to expect, when I decided to start this blog on Sophie’s fifth birthday. Ray (who rarely, if ever, reads the blog — who can blame him, he lives it) announced immediately that it would go viral. I knew it wouldn’t. Really, it’s more of an exercise. Not completely in futility, I hope. 

I’m a person who makes a living as a writer, and yet I’ve never been able to journal. This is the closest I’ve come, and if anything, I’m putting down the bones, as Natalie Goldberg would say. (Corny but true.) On May 21, 2009, I’ll have a pretty good record (minus some stuff I can’t say publicly in real time) of Sophie’s sixth year on earth.

And I’ll have something else, too. I didn’t realize, when I started GIAPH, that this would be the perfect way for me to learn about older people with Down syndrome. At arm’s length. Or farther. I’m not proud of that, but increasingly, I hear it echoed from other parents of young kids with DS.

Last night, a very dear person — a mom at Sophie and Annabelle’s school, part of the Momfia (in a good way!) — gently took me along to the Thanksgiving dinner at our neighborhood ARC center. I’ve driven by the sweet little house dozens of time, but never stopped. The closest I’ve come is Poco, who works at our Safeway, and one time I was in Walgreen’s when a large group emerged from an ARC van, ready to shop.

I fled. My daughter’s 5, I should be well-adjusted by now, but I still can’t look a group of people with Sophie’s features in the collective eye.

When I wrote recently that I haven’t kept my promise to myself to sign up to volunteer at ARC, this friend offered to go over with me. It would better than her first experience, she promised, which involved a craft project and scissors and no small amount of fear on her part. (She wound up working there as an accountant; she doesn’t have special needs kids, she’s just a special person.)

I knew what she meant as we wandered through last night’s pot luck party, offered our baked goods to the organizers and mingled with the guests. I spent part of the short time watching my friend’s boys play near an irrigation ditch, and had to remark to myself that actually, young boys are more foreign to me than a group of developmentally disabled adults, as I cringed and shouted warnings, worried this woman’s sons would break their necks on my watch.

But I had some fear of the ARC folks, I admit, particularly after one of them (he didn’t have DS, but clearly something else) came up behind me twice and screamed a short, impossibly high-pitched scream that told me he could sense my unease. My game face isn’t working, I thought.

About half the ARC participants had Down syndrome. From across the yard, I spotted a woman — an adult, maybe my age, maybe younger, I couldn’t tell — who looked a lot like Sophie. She had blonde hair in a feathery page boy and glasses, and she was sitting quietly at a table, coloring the word “cornucopia” in as carefully as could be, with different colors for each letter. I sat down next to her. She didn’t acknowledge me, just kept coloring.

I watched, feeling ridiculous.

Finally, she spoke, still looking at her paper. “Can you get me a roll?” she asked.

“Of course!” I announced. I jumped up, returning with a roll and some crackers on a plate. I put them next to her.

“Thank you,” she said, and began to color the fruit on her drawing. I watched.

Nearby, some volunteers arrived, and one woman hugged another, welcoming her back.

“See?” she said. “This place is addictive!” Everyone laughed and nodded.

The Sophie look-a-like kept coloring. I kept watching. My friend approached; it was time to leave.

“Bye,” I said. “Bye,” she said.

I might go back to ARC, on a day when it’s not so popular to visit, and try to get to know some of the people. Or I might not. Not for a while, anyway.

For right now, I have my friend Robert Polk, and his son Ryan, who live in Texas. Robert and I “met” in June, after I did a radio piece about Sophie. He heard it, and emailed me, and he’s become one of my favorite GIAPH commenters (I have several!) even though he does not care for my pink oilcloth tablecloth. I think he just needs to see it in context, but then again, I’m not sure what Robert would think of my carnival chalk collection.

I digress. I love Robert’s comments and you might have read them already, but here is a recent one I love that explains how I’m getting to know adults with Down syndrome in the way I think is best for me, for right now, chickenshit that I am:

Ryan has all the necessary savvy to call me on his cell phone, invite himself to supper, supposedly, but really to rip additional CDs to his iPod. He logs on to his own computer account, rips the CDs, asking for help only to scan arcane album covers not listed on the ‘net.

Maybe someday I can send you a copy of his writing. Horrible handwriting (hey, what’s wrong with THAT) but generally impeccable grammar and spelling.

I don’t think he reads much. He CAN read music. All my sons took piano lessons, later to be in secondary school band. Even Ryan marched in the band.

Ryan is a savant about NFL quarterbacks. He used to carry a huge three-ring binder with their cards, memorizing and sorting them in a Rain Man kind of manner. He can tell you everything about any NFL quarterback, even last string players.

He used to work on all those fancy skateboard maneuvers that all the boys would work on, even one of those spin-twist moves.

Sophie will do all these kinds of thing and more!

Now, this sounds like something you with which you ended your This American Life article: Alas, one of Ryan’s more recent writings, at age 32, was an email to Santa. Sigh.

Happy Thanksgiving, Robert Polk. And Ryan. And to all the folks at ARC, including the guy who screamed at me twice, and to my dear friend and her beautiful family. 

And to Sophie.

Not in stock. In merch. Something that will remind you of a positive writing experience, every time you look at it. When I sold a piece to salon.com years ago about how it’s hard to name your kids when you’ve used up all the good names on the pets, I bought myself a red leather Kate Spade organizer, which I only recently gave up for Google’s calendar.

(You can read the piece at http://archive.salon.com/mwt/feature/2002/03/08/pet_names/index.html — and no, I still haven’t learned the link thing.)

Sometimes the purchases are not as auspicious. Ditto for the assignments. Earlier this year, I used the money from a Travel & Leisure assignment (which I will NOT link to here) to pay my Visa bill.

But when I got the check from “This American Life” last week, I knew what I was going to buy, and it’s something very special.

Now, I need to say here that I felt incredibly guilty, taking money from public radio. True confession: For years, I’d time my contributions during the pledge drives to TAL, so I could call in to donate in answer to Ira’s plea. I figured it wouldn’t hurt to beckon a little karma.

And it worked!

I do have bills to pay with much of my TAL check, but I intend to use part of it for this year’s donation. I used another small hunk to buy a piece from Amanda Blake, who so graciously agreed to let me use the image of “Beth” for Girl in a Party Hat. (And big thanks to Deborah, who suggested the name.)

Nancy will be arriving any day now, but I’m so psyched I had to show her off immediately (I also don’t know how to size photos — still — but here’s a bit of an idea), and give Amanda a plug: She’s got more little girls on wood for sale, on etsy.com. You can check her out at amandablakeart.com