Live by the sticker, die by the sticker. That’s how it seems in our world — Sophie’s world — these days.

Sophie was not behaving at school last fall, so her “team” started a daily sticker chart. For now, anyway, it works like a dream. Particularly when it’s a Justin Bieber sticker she’s getting. But it’s not just at school.  Last night papers were piled on the table and I realized that more and more, we’re charting and stickering everything the kid does.

The speech therapist has a chart with stamps. The physical therapist has a chart — when all the Xs are marked, Sophie gets to pick a prize (this time, a mani-pedi). Last week the babysitter got out a jar and a bunch of bottle caps and started a reward system. So far I haven’t done it — not formally, anway, though I do offer rewards on weeks when Sophie gets all her stickers five days in a row — but I’ m not entirely against it.

The cardiologist says we shouldn’t give Sophie the ADHD medication that’s working well for others we know. So for now, it’s stickers.

I’m just wondering how long it will go on. A 15-year-old with a sticker chart? A 50-year-old? There are worse things, I guess.

Not long ago, Annabelle announced that none of her jeans fit. I was a little surprised; it felt like I’d just bought her new ones.

“Well, Mom, when you wear tight jeans, when you outgrow them you really outgrow them,” she said, adding another pair to the pile.

Good point. Annabelle really rocks the skinny jeans. Nothing obscene, but yeah, there’s not a lot of wiggle room in there. I folded them all carefully and put them in a Trader Joe’s bag to bring to work for my friend Peter’s little girls.

Most of Annabelle’s clothes are handed down to Sophie, of course, but not jeans. Not so far, anyway. Actually, Sophie’s never had a real pair of jeans. Her fine motor skills haven’t been good enough to navigate buttons and zipper flies so far — she’s been more of an elastic pants girl, and she hasn’t cared. But the other night, when yet another outgrown pair surfaced, Sophie grabbed the jeans and pulled them on, announcing she’d wear them the next day.

“Can you button them?” I asked, trying to sound casual. “You know, you need to be really comfortable doing that so you can go to the bathroom at school.”

She showed me that she could button them; the zipper was tougher, so I helped. And the jeans looked pretty good, til she moved a bit and I realized they were three or four sizes too big. Falling all the way off too big.

Not so skinny.

For a while that night, Sophie was excited, ran to show her dad and tried on a few different shirts. But even she had to admit that they were far too big, and tough to get off and on. I didn’t say anything, just waited, and eventually she pulled them off and handed them to me.

I felt a little sad. We all — Annabelle included — know the feeling of having just the right pair of jeans, the ones that make you feel perfect and skinny and grown up. I’m being selfish, keeping Sophie in elastic waists. She can figure out jeans; maybe she can start out by wearing them outside of school only, and work up to it. In tiny ways, I find myself trying to keep my kids little. I need to let them grow up, even if that means buying Sophie the Justin Bieber nightgown I know she’ll love (that makes me cringe, just saying it) or keeping my mouth shut when Annabelle tells me about the front flip she did at the new trampoline place.

“What’s Peter’s daughter’s name again?” Sophie asked as she handed over the jeans. I told her. “Please give these to her,” she said.

I will, I told her, pulling her onto my lap for a cuddle.

And tomorrow, while Annabelle’s at a playdate, Sophie and I are going to go to Old Navy to shop for the perfect pair of brand-new jeans, just for her.

“I know what I want for Valentine’s Day!” I announced at dinner the other night. “A raised garden bed.”

“No way,” Ray said. “You’ll never use it.”

The man has a point. I’ve killed every green thing in my path for years, and really, until I have time to even go to the farmers’ market, I have no business pretending I’ll actually plant and maintain a vegetable garden.

Blame my terrarium high. My dear friend Claire and I spent part of the weekend planting succulents in glass jars, then adding tchotchkes (to be honest, that’s the real draw for me, though the succulents were pretty cool) and calling it done. So easy. And so awesome, sitting on my kitchen windowsill. (Here are Claire’s step-by-step instructions.)

“We still have that box of upside-down tomatoes from last year,” Ray observed. Two, actually, but I didn’t say anything. Plus the strawberry plant kit I bought at Lowe’s when I was picking up the succulents the other day.

So maybe I’ll actually plant those strawberries and tomatoes — then I’ll convince him I deserve a real garden. Now to start searching on etsy for some cute lawn ornaments.

This morning Sophie asked for a Justin Bieber “mixed CD.” Things improved this afternoon when she asked me to read her some poems from a falling-apart copy of “Where the Sidewalk Ends” so old it has my sister’s name in the front, her maiden name written in little kid script.

We read a few, then Sophie announced she was going to write her own poem. She dictated exactly what you read here; it’s about her best friend, Sarah, who is scheduled (last minute illnesses notwithstanding) to come over later today.

“Sarah Was Going to Sophie’s and Then She Got Sick”
(by Sophie with apologies to Shel Silverstein)

I can’t go to school said Sarah T.
I have the bumps! I have purple measles!
My stomach has the flu!
Because I have the measles and the bumps.
I have the mumps, the purple bumps.
My tongue is up to my nose!
My mouth’s up to my nose,
My stomach has the Hipstamatic flu.
My tongue is in my eye.
My left eye has broke it.
My right eye is blind.
I can’t help it because Sarah has the flu and the bumps.
I can’t go to Sophie’s house because I am sick because I am sick because I have a flu in my head so I can’t go to school or to Sophie’s house too.
I can’t help it because Sophie’s house is so awesome.
She loves the rock wall.
My head hurts. I have the stomach flu, the Hipstamatic flu.
Sarah is so sick that she couldn’t come to school or Sophie’s house.
I can’t help it because Sarah has the flu!
Oh no, said Sarah. I can’t go to Sophie’s house because I am so sick, because she is so sick that she can’t come.

Annabelle’s making friends at school. She’s taken her time, she’s so wise. Or shy. Whatever.

In any case, I hadn’t thought about what it would be like for her to introduce her new friends to Sophie til she got in the car this afternoon and announced that a friend had asked Annabelle why she’s so short.

“I just told her I come from a short family,” Annabelle said, laughing. “And then I showed her how short my 8-year-old sister is.”

I imagined her motioning waaaaaaaay down.

“And?” I asked.

“And my friends asked why Sophie’s so short, so I told them she has a short family, and she has Down syndrome.”

Did they know what that was? I asked. One did, one didn’t. And what did she tell her?

“I said that Sophie’s really short and really flexible and she had heart problems and she had heart surgery and she has a bump on her chest. And that she reads really really well but she learns kind of slowly.”

And that was it. Like I said, so wise. I’m not sure what sort of crazy miraculous thing I did to create either of my kids, but I consider myself damn lucky.

The phone rang early this morning. It was my friend Deborah.

“Hey, sorry I didn’t call earlier in the week,” she said. “I’ve been snowed in.”

“Literally or figuratively?” I asked, still half-asleep even though I’d been up long enough to make two Carnation Instant Breakfast shakes, a pot of coffee, a sack lunch and a ballet bun.

“Huh?” she asked. We both live in Tempe. I knew the answer. Sorry, I explained. I’d been watching the news, lots of people snowed in on the East Coast.

Plus I’d been thinking about that whole literal versus figurative thing after a Facebook conversation yesterday about word choice. I fired off a quick status update midday, something I was grappling with after realizing I’d used the word “lame” in a story I was writing for work.

So we know not to use the words gay or retard. What about lame?

If I was serious about it (which I was/am) it was a dumb stupid short-sighted silly (is silly ok?) place to launch such a discussion, which quickly devolved, in the way most Facebook conversations do. This time into an exchange of “acceptable” words like asshat (I do like that one), fukbubble and dickhole (really, I’m not kidding). I was right there with my friends. And to be fair to all of us, there was a point to it.

Just what is an acceptable insult?

(“Acceptable insult.” Did I just type that? Isn’t love, sweet love what the world needs now, you’re asking, rather than acceptable insults? Nah, fuck that, I say. I need some good insult words!)

The conversation then turned to context and intent, and while I appreciate that, I started to get impatient. Um, no duh people, I thought. We’re talking about these words as insults, not simply as words. (Literal versus figurative, right?)

Don’t take my words away! One friend cried rather dramatically. He’s a great guy, and one inclined to push the argument for the sake of the argument. But I couldn’t help but want to ask my friend (who happens to be Latino) him how he feels when he hears someone say, “How Mexican!” And not in a good way.

Of course it’s all about context. But even then it’s not that simple.

“I’ve been thinking a lot about literal versus figurative,” I explained to Deborah in the context of my sleepy snow comment, then told her about the Facebook discussion.

I’d been wishing yesterday that William Safire was still alive, but really, Deborah is just as good. She’s wicked smart — no one’s ever called Deborah retarded.

“Words aren’t black or white,” she said. “They’re gray.” And there are endless layers beyond just the literal versus the figurative. That’s the reason that after more than 8 and a half years of grappling with the term retarded, I still haven’t figured out how I feel about this whole word thing, within the context of my role as the mom of a kid with Down syndrome.

For a while after Sophie was born, I used the term mentally retarded a lot — in its literal form. Then testing showed Sophie didn’t techincally qualify as MR. I stopped using it so much. Now more testing says that Sophie does, in fact (if you believe the school psychologist, and that’s a whole other story), fit the medical definition of mentally retarded — and I see that, in fact, she is slower than most of us. I watch her struggle to learn, celebrated that the Ds on her report card for math and English last fall were a C and a C- on last week’s report card. And that’s with an incredible amount of extra support.

And so the word retarded has an extra tough zing these days.  

Grades aren’t the only measure of mental capacity, Deborah warned me. “It’s not all about being book smart,” she said. I know that. But it’s nice to be reminded.

I’d like to speed up the conversation, get to the answer. But I feel like I’m swimming through pudding, most days.

Maybe that’s not such a bad thing.

A few weeks ago, I had lunch with a good friend who happens to have a special needs child — make that special needs adult, this kid is about to graduate from high school. Suffice to say, my friend knows her way around the block.

“You’re getting the pass for Sophie, right?” she asked when I mentioned we’d be spending a few days at Disneyland over the holidays.

“Well, no,” I said. “We never have asked for it.”

Technically speaking, Disney did away with the Special Needs Pass several years ago, supposedly because so many families were pretending to have screwed up kids in order to cut in line for rides. But you can still present your special needs child at Guest Services and get a blue card that gives your kid and her family access to the handicapped (read: shorter) lines.

“Oh come on,” my friend said. “Ask for it! How often does something come along that makes life a little easier? And it will make Sophie feel so special, knowing she’s getting you in the shorter line.”

So I did it. That first day, as soon as we arrived at the park, Ray and Annabelle zoomed off to Space Mountain and Sophie and I stood in line to get her card. The woman wasn’t very nice to us — other kids got a special “Honorary Citizen” button but all I got was the third degree over just why we needed the card. Since I’d asked myself the same thing, I wasn’t too upset. Just guilty. I let the card float to the bottom of my special Disney (yes, we’ve been that many times) purse; we never used it.

The thing is, Sophie doesn’t need a blue card to feel special at Disneyland. Even with 90 minute lines, crushes of people and rides that soak her clothes, for her this really is the happiest place on earth. Sure, she gets antsy in line, but not much more so than your average kid and not so it gets in her way. At Disneyland, I can tell, Sophie feels above average. Here she doesn’t need to compete — there are no math quizzes, no spelling drills, no cliques of third-grade girls to leave her out. Just princesses to meet, live dance shows to take part in, and fantasy lands to enter. We rode that damn Ariel ride six times this year. I still have the song stuck in my head, a week later.

It was awesome.

One place, though, Sophie’s lack of dexterity emerged. That was on the pier at California Adventure, where they have a few old fashioned carnival games. Toward the end of the second day I insisted we take a break from rides to try and win a couple prizes. Sophie wanted to do it herself, so I forked over the cash and she tried. And tried. First we attempted an impossible game where you roll balls in a hole (we finished 7th and 8th several times) and then Sophie noticed another one where you point a large water gun at a small black dot. Again and again, kids big and small were walking away with stuffed Dumbos. Except for Sophie.

I wasn’t the only one who noticed. A sweet woman with no kids nudged me after our fifth or sixth loss, asking if it was okay if she gave Sophie the Dumbo she’d just won. Of course it was. Sophie’s face lit up; she hugged the woman.

And I thought we were done with the games. But by then, Ray and Annabelle had caught up with us. “Let’s play that one with the balls,” Ray said.

“Good luck,” I replied. “That one’s impossible.” But he paid for himself, Annabelle and Sophie, anyway, and they joined three other players on stools.

Guess who won, fair and square? It was just like in the movies.

Dumbo was forgotten as Sophie was presented with a large stuffed horse, the character Bullseye from Toy Story. We managed to give that Dumbo away (Annabelle won another one, it was getting ridiculous — talk about Too Much Disney) but Bullseye rode home to Arizona in Sophie’s arms.

“I won! I won! I won!” she kept saying.

We certainly don’t need another stuffed animal in the play room, but I can use a reminder that Sophie doesn’t need always need a pass.

My dear friend Jill shared her personal manifesto in our Mothers Who Write class last fall, and it got me thinking, of course, about my own. (Jill’s is magnificent — like she is. Included on it: “I will judge you by your playlist.” She’s inspired us to post them on the New Times culture blog, phxculture.com, so keep an eye out for that this year.)

I could have gone to 100, but here’s a start. I strongly believe manifestoes (mainfesti? manifestee?) are meant to change over the years, or even the days. Some, like my grandmother’s mantra regarding butter, will not change. But I reserve the right to switch things up.

Today seems like as good a time as any to share my manifesto, particularly since I’m resolving to not make any New Year’s resolutions this year, other than one: to be more sure-footed. That’s vague enough to sound do-able, don’t you think? And it applies to many things. I’m pleased with my choice.

And now, Amy’s Manifesto (with thanks to Jill):

1. Start fresh every day.
2. Try to never use a thesaurus.
3. Physical humor is very rarely funny, but when it is, there’s nothing funnier.
4. Do not trust a person who says he or she does not like The Beatles.
5. Nothing will ever take the place of a handwritten letter.
6. If you want something to taste good, use butter.
7. Never own a pet smarter than you.
8. Use both exclamation points and glitter sparingly.
9. Don’t hang your pictures too high or set your expectations too low.
10. You have to know the rules to know when to break the rules.

Happy New Year!