I am so selfish that I actually had the following thought on Tuesday morning:

How dare Eunice Shriver die on Sophie’s first day of school.

I know. I’m horrible. But really, for once, I’d love to have a day that  is just about Sophie.

Sophie. Not my future Special Olympian, my mentally retarded kid — or, as I learned later in the week, my “intellectually disabled” kid.

I don’t know why, probably because I’ve heard the term “mentally retarded” so many times I’m immune to the sting, but I find the phrase “intellectually disabled” far more offensive.

The day after Shriver’s death, Diane Rehm had a man with Down syndrome on her show, to talk about the amazing contributions Shriver and the Special Olympics — and the special olympians like this man! — have made.

Funny, I realized I’d never heard someone with Down syndrome talk on the radio. You almost couldn’t tell, this man’s speech was so clear, his diction so sharp, his vocabulary remarkable. I sat in my car in a shopping mall parking lot, oblivious to the clock. Then one of the other guests, or maybe Rehm herself, said something about being “intellectually disabled”.

I sucked wind. The man I’d been listening to on the radio was definitely the smartest person in the studio that day — he had to be, to overcome the physical and other challenges that stood in his way of having such a good discussion. How dare someone call him intellectually disabled?

It’s all semantics. I know that. The kind of ephemeral stuff people waste hours debating over keyboards and coffees and cocktails.

What matters is that the guy is smart (or whatever) enough to be a super spokesman, to challenge our notions of what someone with his label (whatever you want his label to be) is capable of. Sophie did herself proud, too, her first day of school — her first week, in fact, has gone well, by all accounts. (All accounts I’m hearing, anyway.)

I can put my kid in a pink tutu and polka-dotted shoes for the first day of school, but there’s no way to dress up the terminology. It shouldn’t be about labels, anyhow. It’s all about the individual people. Maybe that’s something we’ll eventually learn from Eunice Shriver and her Special Olympics.

I pitched the guy at the public radio station a piece about my minivan crisis, but he didn’t bite. I think he thinks I write too much about my kids. (Really? Moi?!) Or maybe the piece sucked.

In any case, he wanted something related, so in a weak moment I made my latest confession — and that, he wanted.

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”.

As usual, all of the posed First Day of School shots I took of the girls failed to do them justice – partly because Sophie won’t look at the camera, and also because Annabelle tends to insist on wearing a white shirt and pulling her hair back, making  her image look a lot like a mug shot. I considered it a victory that I got her to wear the silver ballet slippers she had chosen for the occasion at Old Navy. I don’t know why I care –  somehow, I felt, the day needed to be festive.

Sophie was festive from head to toe. Unlike Annabelle (who, come to think of it, is a lot like my sister — never wants an outfit that stands out too much, but wants to look nice) Sophie let it rip.

She popped out of bed this morning, grabbed her outfit off the table that I (control freak that I am) thought was beyond her reach and dressed herself perfectly in a pink tulle skirt and polka-dotted top. She chose socks that coordinated nicely with her polka-dotted ballet slippers, and even accessorized with a pink rubber band on her wrist and a rhinestoned barrette in her hair.

Both girls looked beautiful — and nervous — standing in line with their backpacks on (adjusted by Ray, at the last minute), sweating in the obscenely hot/humid August sunshine.  In fact, just about all of the students and some of the teachers looked like they might puke, and when the final bell rang I felt my own stomach jerk reflexively.

Big third-grader Annabelle disappeared quickly, surrounded by friends. Sophie looked a little dazed as I guided her over to her pal Sarah (of summer playdate fame). The two held hands, waiting to enter the school.

“Bye, Sophie!” I called one last time, figuring she’d bolt from the line for a hug, but selfishly willing to risk a small commotion.

Instead she turned around, smiled, and blew me a kiss. Then she turned back and walked to class with the rest of the kids.

Suddenly, it was quiet. Overhead, clouds gathered and the glare of the sun narrowed just a bit. The loudspeaker came on with the principal’s morning announcements.

“Parents, if you are still here at school,” she began, and Ray and I finished for her in unison: “Get the hell out!”

So we did. As we walked to the car, I reached up and felt something in my hair. Sophie’s rhinestoned barrette. Somehow, in the commotion, it had wound up on me.

Tomorrow is the first day of school. Both girls are fast asleep — took baths, accepted earlier-than-summer bedtimes without complaint. The backpacks are labeled, I cut the tags off the first-day-of-school outfits.

Now there’s nothing left to do but freak out.

I’m good at that. Without meaning to (I was only looking for the link, and truly hate the sound of my own voice) I just listened to the piece I did for the local NPR station last year, in honor of Sophie’s first day of kindergarten. I was worried then, but as I concluded, I had to try — after all, they call kindergarten the great equalizer. In a lot of ways, they were right. Sophie did okay. So okay that tomorrow she’ll begin first grade.

“They” failed to mention the stamina involved in jumping these hurdles year after year, worrying every day whether you’ve made the best decision, done right by your child.

First grade will be harder than kindergarten. And, in some ways, easier. We’ve already made the great mainstreaming leap. Sophie is a member of the community that is this small public elementary school. The principal has deemed Sophie “so cute!” and since she wasn’t too big a problem last year, hasn’t made any noise about finding other options in the district. Not to me, anyway.

But the challenge this year will be keeping up. Staying in line. Sophie’s not always so good at that.  And as she gets older, the stuff that used to be cute is getting less and less appropriate. At “Meet the Teacher” tonight, I never unclenched my jaw, even through the hellos to old friends. I had an eye on Sophie the whole time, watching for clues that she doesn’t fit in. There — she spotted a little boy from her kindergarten class and raced over, throwing her arms around him as he stared silently, desperately, at his father. When a little girl from last year came over to say hi, her mother told me the girl had hoped Sophie was in her class this year. Liar, I thought, even as I smiled broadly and said how sorry I was the two wouldn’t be together. Sophie hugged that little girl’s dad til he pried her arms away — very gently, but still. I watched the aggressive affection replay itself in a half dozen ways, til I had to stop looking so hard and focused instead on keeping Sophie  moving through the crowd.

As in kindergarten, academics won’t really be the challenge this year. It will be social. And if anyone can help Sophie with that, it’s Miss Y.

Both girls got the teachers we requested. Annabelle’s is absolutely darling — young, creative, energetic, and AB is thrilled. But Sophie’s really the lucky one.

Miss Y, as I wrote a bit during the last school year, was most recently a special education teacher. She wanted a typical classroom, and just happened to land in first grade. She has a close family member with Down syndrome. And beyond that, if you met this woman — even if you didn’t know all that about her — you’d just know she’s the one. It’s impossible to fill Ms. X’s shoes, but Miss Y will follow beautifully in her footsteps.

That’s not to say Sophie will fall into step herself. So much of this is really up to her, I think. But with Sophie’s state services almost certainly secured by that 55 IQ score and Miss Y in the classroom, she’s darn well equipped.

I’ll stop gushing, but first I have to share with you part of the teacher letter Miss Y sent home late last month, to give you an idea of how wonderful she is.

….During the coming year, your child and I will be spending many, many hours in the classroom together. I want you to know that there is no place I would rather be, and no job that I would rather have. Together, as parents and teacher, we can truly provide a comfortable, stimulating, and nurturing environment for your child. My promise to you is that I will consistently put the best interest of your child first, keep you informed about your child’s growth and classroom activities, and always welcome your input and support.

….As a first grader, your child will be provided with a multitude of writing experiences, and a wide-range of hands-on math activities that will encourage critical thinking….I work hard to differentiate my teaching and structure lessons to meet the needs of all learning styles, so that each of my students will have a wide range of vehicles for learning.

Yes, that’s Sophie’s teacher.

“Wow, things just fall in your lap, don’t they?” a friend at the school remarked, when she heard Miss Y would be teaching first grade this year.
Yeah, I scoffed to myself, when she said it. Things sure do fall in my lap — like a kid with Down syndrome. But you know what? My friend was right, even if she didn’t quite realize what she was saying. In a lot of ways, Sophie did simply tumble my way. And I’m damn lucky she did.

I stare at my kids all the time and wonder if my heart will burst from loving them too much. Both of them. I’ll be honest: Early on, when Sophie was just a mushy baby and more of an abstract concept (like all babies are to me, frankly) than a person, I wondered if I’d love my kids equally. I don’t wonder that anymore.

But I wonder every day if I’m doing right by either girl. With Annabelle, it’s a million tiny things and one huge question — what will it be like, in the final analysis, to have Sophie as a sister? And with Sophie, it’s a million huge things, starting with school. I know from last year that all I can do is take it one day at a time, make Miss Y promise to tell me the minute something goes wrong and to accept that at some points, something will go wrong.

And some things will go right. We made our way from Sophie’s new classroom to Annabelle’s, then down to the gym and finally the cafeteria. I stopped to chat with some other moms, and looked up to see Sophie holding hands in a circle with three other little girls, playing ring around the rosy. For a moment, at least, I couldn’t help but feel optimistic.

I rolled over and sat up. Across the tent, Ray’s head emerged from his sleeping bag. 

“What time is it?” I whispered.

“3:30.”

“No it’s NOT. IT CAN’T BE. How do you know that?”

“I just looked.”

See? Even Mr. Camper couldn’t sleep. Shit. At least two hours before sunrise and I was zipped in a tent with my family, having what was clearly about to be a bona fide panic attack. My heart and head were both racing. I couldn’t feel my toes or my nose – it was that cold — but still, I was sweating. I couldn’t sleep. I couldn’t relax. I couldn’t breath.

And more than anything else, I was thirsty.

Calm down, I told myself. This is the third night. The last night. Just a couple hours to go. You can do this.

I couldn’t do it. All I could think about was the Diet Pepsi in the bear box. Yes, I said bear box. When you camp in Yosemite National Park, you are strictly prohibited from sleeping with your food — or even drink, even if that drink contains no natural foodstuff. You can’t leave it in your car, either; the bears will rip the doors off. All food, drink and toiletries (even the unscented wet wipes I thought I was so clever to buy) must be locked in a strong metal box with a squeaky, hard-to-do lever, bolted to the ground in the middle of your campsite, next to the fire ring.

You’re practically required to crawl in the freaking box to eat. And with good cause. Just that day (or was it the day before?) we’d seen a bear — it crashed past our campsite twice. Cute, but enormous. Someone chased it off, but all day, we could hear people yelling at it. Not the kind of thing you want standing between you and your diet soda at 4 in the morning, and we’d heard the sound of rubber bullets (or maybe fireworks) shot repeatedly in the middle of the night to scare the 400-pound creatures off.

Still, I knew what I had to do.

I threw off the covers and stumbled to my feet, catapulting across several half-inflated twin air mattresses.

“Where are you going?” Ray asked.

“I’m dying of thirst!” I whispered, giving Sandra Bernhardt a run for her money.

“OK, well, you better pee while you’re up.”

I muttered some expletives, but the truth is I’d already thought of that. Despite the fact that I had purposely limited my fluids so much over the past three days that my tongue was a piece of felt, I still had to use the bathroom. Luckily there was one at this campground, and the toilets even flushed. But the bathroom was several campsites over. And I know it’s been, what, a decade since that serial killer was loose in Yosemite, and I know they caught him, and I don’t even know if he was ever near Tuolmne Meadows (don’t tell me if he was!) but that’s all I could think of as I held my lantern in front of me.

Well, that and bears.

I clumsily (and noisily — sorry, neighboring campers) opened the bear box, grabbed my soda, and chugged as I trudged up the hill to the bathroom, where I checked the three stalls for beheadings (or beheaders) and all manner of beasts. (I’m not interested in meeting  up with a squirrel with my pants down.)

Business over, I walked back to our tent, trying to enjoy the quiet night, the smell of pine, the full moon. It was no use. I’m just not a camper. I take a deep sniff of the fresh air – and inevitably, I sneeze. Silence scares me. In my world, it’s bad enough that I can’t find the Diet Coke in the small campers’ store and have to buy Diet Pepsi instead; don’t tell me I can’t bring it in my tent with me.

At the entrance to the tent, I bent to unzip the not-so-bug-proof nylon flap dividing my family from the big, scary world, and suddenly had one of those crystal-clear reality checks you get in life from time to time.

“So,” I asked myself, “if this is what it’ll take to make Ray happy — this whole scary, smelly, miserable, camping in the dirt thing — can you do it?”  

The answer came immediately. “Absolutely.”

The truth is that there was a lot of good on this trip, a lot of slow, silly family time and private jokes (like the time Mommy got up to pee in the middle of the night!) that we’ll tell for a long time. Ansel Adams-picturesque lakes, the aforementioned meadows, smores by a real campfire, not the kind Kate Gosselin made last week in an homage to Coleman and Hershey. (Could that have been any more obvious?!) The kind of memories Ray has of camping with his own family, growing up.

 “Absolutely,” I thought. “I can do this, and I can even do it again — as long as I can take my Diet Pepsi in the tent with me.”

There is just no way a bear is going to come crashing through a tent, looking for a half-full diet soda. Right? I crawled in between the girls, tucked the bottle by my feet, and slept like a baby til 8.

I’m not sure Annabelle appreciates the final product quite yet — or maybe she does — but there’s something oddly joyful for me about finding items like the one pictured, left by Annabelle on the coffee table after what was obviously a raucous arts and crafts session involving her younger sister and some out of control markers. Or maybe scissors.

What would you call it? It’s not quite Outside Art.

How about Sister Art?

Yesterday morning, I saw a snowman.

Outside my favorite coffee shop in Tempe, just sitting there on the sidewalk. Melting. It was maybe a little taller than Sophie — nothing fancy, with twig arms, a carrot nose and coal eyes.

The temperature was predicted to hit 115 yesterday, but someone woke up and got some ground ice and built a snowman. You don’t see a lot of whimsy in metropolitan Phoenix, particularly in the summer, so I took note. And a photo.

A few hours later, I strapped Sophie into her car seat and we headed off for her IQ test. I braced myself, feeling repelled by the idea of meeting the psychologist others have dubbed Dr. Death, let alone the idea that I’d actually scheduled an appointment with her, with the hope that Sophie would fail an IQ test and keep her state services. The law says my kid needs one of four diagnoses: autism, epilepsy, cerebal palsy or mental retardation. Having Down syndrome — which she does have — isn’t enough on its own.

Go figure, I really liked the doctor. We hugged at the end. And I didn’t just like her because she seemed like she wanted to help Sophie, which she did. She seemed knowledgable and reputable (remember, my lauded pediatrician did recommend her long after I’d heard from others of her shady reputation) and, as so often happens in this small town of a metropolis, she’s worked closely with several medical professionals I know and trust.

I liked her, even though she told me my kid is retarded. And not just retarded. Really retarded. After answering questions for half an hour myself, then leaving Sophie alone with her for an hour, I returned to her small office and perched on the couch, expecting the doctor to tell me she’d have results in a couple weeks.

Oh no. She had numbers now. As the doctor shuffled her paperwork, I thought of Michael Berube. He’s an amazing guy, a humanities professor who studies the role of the disabled in our society. His son has Down syndrome, and Berube wrote a book about him, “Life as We Know It,” when Jamie was about 4.

Berube came to Arizona State to speak in the spring of 2008, and I went to see him. This was right around the time the pre-school told me they wanted to test Sophie’s IQ for the first time, and I raised my hand and asked the professor about it. They think she’s not mentally retarded, I told him. Could that be possible? 

Berube nodded. He knew what I was talking about. He didn’t answer the question I asked; he answered the question I should have asked.

“You need to make sure her IQ doesn’t go over 69,” he told me. He wasn’t the last to say it. The cut off for mental retardation on an IQ test (and I know, I know, I know, many people don’t consider them valid — me either, particularly after the last year and a half) is 70.

And so I sat on that couch and thought, “69, 69, 69, 69….” until the doctor derailed my train of thought.

“Sophie’s IQ is 55,” she said. That was according to her one-on-one testing. The result of the questions I answered (and trust me, I may not have bragged, but I didn’t lie) was 57.

The final report won’t be done for a week, but there’s the number: 55.

A year ago, I sat on a couch in a different psychologist’s office, thinking, “69, 69, 69″ and heard, “Eighty-three.” That was 2 points higher than the school’s testing.

(Funny, I cried when I heard 83. Yesterday, I was dry-eyed. Maybe I’m in shock.)

Maybe it’s because Sophie’s 6 now. This test was different. Maybe it’s because the psychologist who gave her the 83 last year spent the entire summer getting to know Sophie and us, and administering the test in managable pieces, admitting she asked some questions several times. We were done yesterday in well under 3 hours. Maybe it’s because Dr. Death rigs the test. Part of me wants to think that. (“WTF? FIFTY FIVE?!!!!”)

In any case, I’m not complaining. I swore I wouldn’t. “This is what you wanted, right?” more than one person asked yesterday, when told of the results.

Yes, sure, of course. Of course not. No.

You’ll love this part. The psychologist gave me the results (and a lecture about how Sophie clearly has ADHD, which I’ve heard before) and then she apologized.

“You probably won’t be able to keep her services with this number,” she said. “I think she needs to qualify as moderately mentally retarded, and this will likely only put her in the mild category.”

Sophie and I said goodbye to the doctor and headed off in search of chocolate ice cream. I strapped her into the car seat and looked into her eyes. “I love you, Sophie!” I told her. “You know you’re a smart girl, don’t you?”

And then my daughter did something I’ve never seen her do. She looked at me wordlessly, opened her mouth, and let some drool spill out onto her chin.

Really.

I wiped it off, kissed her and got in the car. We never did get chocolate ice cream, only because Sophie fell asleep immediately. I drove around for an hour and a half, making calls to my husband Ray, my mom, Sophie’s kindergarten teacher, Ms. X.

I told Ms. X about the drool. She hooted. “Oh yeah, I’ve seen her do that before, she was sending you a message!” she said.

Sophie’s no dummy. I do think she’ll get to keep her services (her support coordinator told me 69, nothing about moderate vs. mild) and last night I emailed the three wise women (physical therapist, occupational therapist and speech therapist, all of whom have been with Sophie for years) to tell them about the test.

This morning I had a message back from Sydney, the speech pathologist.

55…85…105… when it comes to Sophie, it’s all the same to me.

Right or wrong, [the doctor] is giving you a snapshot of performance during a very short period of time in which a child is put in an unfamiliar environment with an unfamiliar adult and asked to comply.  My guess is that if Sophie decided she didn’t want to do a task, she convincingly said, “I can’t,” or “I’m very tired.”  During administration of select standardized tests, this counts as an incorrect answer.  There is no game playing or adult manipulation allowed.  If I assumed Sophie was incapable of learning a new task every time she told me, “I’m so tired,” I would have thrown in the towel long ago.

I am not bashing [the doctor].  I am not negating the number 55.  This is her system and her style of testing and she has earned respect for this.  She is also adamant about children getting services which I very much appreciate about her.  She wants the best for children and parents. 

Now…in my perfect world (and in the perfect world of many psychologists I have worked with), a true IQ would be the result of testing completed over multiple sessions in familiar environments with input from parents, speech pathologist, occupational therapist, physical therapists.  It is difficult if not impossible to pull a child apart and look at one specific area (ex. cognitive functioning) without considering the influence language, fine motor, gross motor…have on it.  If a child is asked to manipulate shapes to make a certain pattern, and is unable to do so…is it because of cognitive level or could it be that the child’s fine motor level doesn’t allow for completion, or could it be that the child’s visual level doesn’t allow for completion, or could it be that receptive language level doesn’t allow for completion.  I know you get this.

 I‘ll be seeing Sophie later on today and we are working on high level verbal analogies.  Was that on her IQ test???

Can you see why I’m so desperate to keep these women in Sophie’s life?

Last night, we went swimming at my parents’ house and I told my mom and the girls about the snowman I’d seen in the morning. We sang “Frosty the Snowman” then several other Christmas songs, sweating in the lukewarm pool water.

By the time we headed home it was after 9. On the way, I swung the car into the parking lot of my favorite coffee shop, and hopped out to take a look at the spot where the snowman had been. Maybe part of me thought it would still be there, even though I knew there was no way. Annabelle crawled out of the car behind me.

The twigs, coal and carrot were sitting in a puddle. I looked closely, then leaned over to feel the ground. It was cold. Incredibly, there was just a bit of ice on the ground, even though the temperature did, in fact, reach 115 yesterday.

 A little bit of someone’s dream was still there.

…what kind of luck — good or bad — well, that’s up to you.

Tomorrow is Sophie’s IQ test. Her third IQ test. Many people never take one in their lives. My 6-year-old is a veteran.

If her score goes down 14 points, she keeps her state services.

There have been suggestions of Benadryl and late night play sessions (and worse) but I’m playing this one straight.  (True, true, I found the psychologist with the most lenient reputation.)

But really, it is what it is. Sophie is who she is.

I know this much: IQ tests are ridiculous. I don’t need to tell you that, dear reader. You’ve heard me whine long enough about how little cognitive skill (or rote memory, which I suspect is working in Sophie’s favor) has to do with fine and gross motor challenges, or speech difficulties, the stuff of Sophie’s state services.

What I should really be doing is quitting my job and running for the Arizona Legislature, so I can try to change the law that says you only get state services for the developmentally disabled if you have a. epilepsy, b. cerebal palsy, c. autism or d. mental retardation.

Then again, maybe Sophie should run. No matter what her score tomorrow, she’ll outwit many members of the Arizona Legislature.

That was a cheap shot. Once, years ago, one of the guys I work for called our legislators “mouth breathers” and I thought that was hilarious, til recently I was thinking about it and realized that’s just a clever way of saying “retard”.

But really, when it comes to the folks making the laws for our state, it gets tempting. Not tempting enough, however, to try to join them. Not that I’d ever get elected, anyway. Talk about an exercise in futility.

Which is probably what tomorrow is. And if it isn’t, I’ll be devastated. I’m screwed either way.

I do know that either way, Sophie will be okay.

None of this changes my girl. I know that. It’s my job to fight and protect for her but it’s also my job to love and enjoy her. So instead of ending this post in anger, I’ll end it with a small tale.

The other day, appropos of not much, Annabelle remarked, “Sophie doesn’t have any collections.”

Annabelle collects many things — most recently rubber ducks. I stood for a moment and pondered the comment.

“Well,” I replied, “when you were 6, you didn’t have any collections.”

Annabelle and I both looked over at Sophie, who was busy watching Noggin.

“Hey Sophie,” I asked, “do you have collect anything?”

Looking rather bored, she answered matter-of-factly.

“Piglets.”

Um, okay, DUH. Of course Sophie collects Piglets. Her bed is covered. We talk about Piglet all the time. Annabelle and I both slapped our foreheads and we all laughed. 

Smart little girl.

I’m so obsessed, I could write a book about Smeeks, the candy store that opened last week in central Phoenix. If you’re lucky enough to live here or visit here (can you believe I just wrote that? and in July!) you’ll find Smeeks on the northwest corner of Central and Camelback, in the inside-out strip mall that houses one of my other favorite shops, Frances.

I’ve said it before and I’ll say it again — the owner of both, Georganne Bryant, has the exact same taste as me — except much, much better.

And for that I’m grateful. I’m grateful that for once, I can write about a retail establishment I visited and loved, and have it be one that’s actually here in my hometown. And I’m grateful that someone else understands the joy of nut cups.

It’s funny because I first learned about nut cups in “A Birthday for Frances.”  The boutique is named for Bryant’s grandmother, not the badger in my favorite children’s books, but still. It’s a sign, I tell you!

But not as cute a sign as the one Bryant hung on her shop. I won’t bore you by discussing the fact that Bryant sells nut cups in various colors, adorably packaged with the Smeeks tag; or that she has a super assortment of old school candy and sparklers shaped like stars and numbers (for birthdays) and suprize balls (please don’t tell me you don’t know what a suprize ball is) and a photo booth; or that her store is sweet, but you won’t get a cavity — there’s even a “gun” section for boys; or that every bit of the small place — from the polka-dotted oilcloth to the shiny red enamel paint to the vintage toys behind the counter to the gnome mascot – is to die for. (The only thing missing is a jar of Chompo bars.) I’ll show you some pictures, instead.