Not to be. Sophie barged in this morning and started asking questions.

My favorite: “What are those dots on your face?”

Not interested in explaining the fundamentals of foundation (which I later managed to squirt all over the bathroom, really not my finest hour) I tried to gently push her out the door, but she would have none of it. Clearly sensing my annoyance, she edged over to the counter and picked up my imitation Spanx. I could feel the frustration rising  — is nothing sacred? –when she smiled and remarked, “These are cute, Mommy!”

How could you not melt at that? I cracked up, instead of just cracking, and finally — on her own terms, as always – Sophie left the bathroom.

OK, so here’s my question. How harmful was that to Sophie? I can’t honestly tell you. I’m way too close. In thinking more about this “should we be writing about our kids” thing, I’m realizing I can’t really speak to my own work.

I am grateful for the insightful comments you’ve left. The most obvious topic for discussion is how to identify your kids. I feel strongly that this is a completely personal choice. I certainly don’t judge anyone who chooses to nickname (or not name) their kids in a blog — in fact, I wonder from time to time if I’ve shared too much. (And here I can’t say more about what I do and don’t share, or what details I change, for security purposes.)

All I can do is share my own philosophy. I figure that in the end, everyone’s going to read everything. And even if I change Annabelle’s name to Petunia, she’s still going to know it’s her. Chances are, her friends will, too. Ever since I wrote a rather personal piece about my father and our relationship, and my dad’s relationship (to use the term very loosely) with John McCain (yes, that John McCain) and figured my dad would never see it and he did see it (and wasn’t thrilled) I try to write with the expectation that anyone/everyone will eventually read any and everything I write. (Really, we should all be so lucky, huh?) 

And so that means that while I share an awful lot (some would say way-TMI) on this blog, there is much, much more I don’t share at all.

The kid thing, that is a moving target. Particularly when it comes to Sophie. I have a general idea of what Annabelle will and won’t “get” when she’s old enough to happen upon this blog (which I suppose could be any time — she can read, after all) and how much she’ll understand as the years go on.

With Sophie, I’m not so sure. I did a lot of writing about her when she was much younger, and that was pretty raw. Like the public radio piece about how I don’t think mentally retarded people (and yes, I used that term) should wear overalls.

What will she think of that when she gets older? I have no idea. I stand by the overall thing, even today, but now that she’s growing up — and getting smarter every day — I wonder if I’d write the same way now that I wrote back then.

I can’t turn back time or scrub the Internet, so I try to focus on moving forward — on being true to my subjects, honest with myself and also a good self-editor (the hardest part) when I write about anything, but particularly about my kids.

My goal in writing about Sophie has not changed: I have an urge to document our life, to try to figure it out, to show it to people who are the way I was before I had her — people whose greatest exposure to a person with Down syndrome was Pink Slip, an instructional film made decades ago to teach developmentally disabled girls about their periods, but which fell into the hands of a middle-aged male friend of mine who spent years showing it at parties.

It makes me a little sick to think about Pink Slip now. (For the record: I laughed.) I don’t know how much of all of that Sophie will ever grasp (probably a whole lot of it) or what Annabelle will think about any of it.

Last night, the girls and I went to my mom’s for a swim, and out of the blue, Annabelle began quizzing my mother about her childhood in New York in the 40s and 50s. “Tell me about Uncle Arnie,” she urged. “Tell me stories about your dad.” It was beautiful and as I watched Annabelle listening to her Gaga I realized she has the reporter instinct in her, just as Ray and I do. So maybe she will get it. Maybe she’ll be pissed about some of it, too.

In any case, I know I don’t always succeed, but I try to be the hardest on myself, when I write about our family. And I try to constantly question whether doing this blog is the right thing at all.

Up next: Since it’s too close for me to talk about my own stuff (even though, hmm, I think I managed to pound out 800-plus words on the subject here) I’ll share examples of how other writers and artists cover their families well.

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.

So far, it hasn’t been a big deal. I giggled like crazy years ago when Annabelle was in kindergarten and Ms. X announced she’d taught the kids the difference between “vulva” and “vagina”, but other than that, not much has been said about the whole thing. It’s pretty mild stuff, early on.

I knew third grade would be different. It was in either third or fourth grade that I discovered the book “What’s Happening to Me” strategically placed where I’d find it at home. I read “Are You There God, It’s Me, Margaret” by Judy Blume. And most memorable was the visit the school nurse made to the classroom.

The visit was accompanied by the viewing of an 8 mm film about menstruation. I don’t recall details, but I will never forget that the nurse — whom I remember as being around 110 years old, though I suppose she might have been as young as 50 and prematurely gray — felt the need to explain to us in great detail that when she was a girl, they had to use rags.

Really, what was the point of telling us that?

Anyhow, when I signed the Human Growth and Development permission slips a few weeks ago, I knew the lessons wouldn’t be tacky. The school has this stuff down. In fact, I forgot the week was even coming up, til Annabelle and I were driving home from her piano lesson last Tuesday and I tried a shortcut that didn’t work.

“Mommy, do you ever get scared you’ll get lost in the car?” she asked from the backseat. (The car is where we do most of our deep communicating.)

“No, not really. I have my phone. I can call if I get lost. Why?”

“Well, Ms. D says she gets scared of that.”

Ms. D is one of the third grade teachers at the school. Annabelle explained she had her for Human Growth and Development, and that that day they’d been discussing fears. Annabelle was afraid of meeting new people in new situations.

Weird segue, I thought, but I didn’t say anything.

By the end of Wednesday, my mom friends were giggling about how their daughters were talking about “the S-E-X” (no specifics, thankfully) but when I asked Annabelle, she said only that they’d discussed “kindness” in her class.

It wasn’t til Thursday that I caught on.

“How was Human Growth and Development today?” I asked Annabelle, as we cuddled on the couch before bed.

“It was good!” she said. “We took a Messy Room Pledge!”

I pulled back and looked her in the eye.

“Hey, wait a minute,” I asked, suddenly wise. “Did you ever turn in that permission slip I put in your Important Papers folder?”

“What permission slip?”

I hugged her, shaking with silent laughter.  Then asked her to name the other girls in Ms. D’s section of Human Growth and Development; yep, all the religious kids.

So, anyone interested in teaching my kids the facts of life? When we’re at my parents’ house for Thanksgiving, I intend to search for “What’s Happening to Me?” My mom volunteered to talk to her, but I said no thanks, Annabelle doesn’t need to go through life referring to both male and female body parts as “wieners”.

Someday, I know, Sophie will be a much bigger challenge. I’m happy to put that one off as long as possible. Anyone seen “Pink Slip”?

(If you’re looking for a good cry…..)

http://www.youtube.com/watch?v=t_0K-gPlyb0

(I watched it a second time with Annabelle. One of the people featured appears to be an adult.

“Oh, you can have Down syndrome when you’re an adult?” she asked.

“Yes.”

“So Sophie will always have problems?”

“Well, yes, some.”

“Oh. I’m glad I don’t have Down syndrome. I speak PERFECTLY.”

Pause.

“But I think Sophie likes Down syndrome.”

“Why do you think that?”

“Because she has fun.”)