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Party Hat

Toy Dump

posted Monday February 9th, 2009

elmo

The forecast called for rain and sun today. “Rainbow weather,” Ray called it. It was also the rare Sunday we were home with no plans (for much of the day, at least).

It was the perfect day for a toy dump. That’s our term around here for the act (art?) of cleaning out the toy room, which is not really a room but the former dining area and a pass through from kitchen to living room.

I like to document things, but I’m actually glad I don’t have a picture to offer up. I’ll paint you one with words: It took four hours and four people to fill the porch with at least 6 Hefty bags, a rocking horse, several plastic doll houses and other items. We also filled the huge garbage can (thank goodness tomorrow’s garbage day).

The best part: We all laughed a lot. “This thing isn’t giving up without a fight!” Ray called out, as a Melissa and Doug wooden castle refused to budge from under a shelf. For some reason, I almost wet my pants over that one.

The rest of the house is still a sty, but that play room looks pretty fabulous. And my nephew is getting two enormous boxes full of Elmo toys, courtesy of Cousin Sophie.


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Party Hat

Bed Dread

posted Saturday February 7th, 2009

At 6:30 this morning, I heard her. Shuffle, shuffle, stomp stomp stomp, as she climbed out of bed and ran across on the noisy wood floor, headed — I don’t know where.

“Sophie?!” I called.

“I get up by myself!” she announced.

I coaxed her into my room and she climbed in bed with me. We cuddled for a while. 6:30′s not so unreasonable (though she just announced she’s tired) but I’m seeing a scary pattern. Tomorrow, 6? By next week, midnight?

And by March, all-night parties?


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Party Hat

I didn’t go to my prom. Neither did Ray. I’m not sure what he did that night, but I’m quite certain he didn’t attend a speech and debate tournament instead.

(Actually, I just asked him, since he’s across the kitchen making coffee. I’ll have to edit part of his response, but he said he’s not exactly sure, he probably played raquetball or watched a movie. “Speech and debate tournament?” he said, in response to his own query. “Wow. That’s pretty geeky.”)

So neither of us can say boo on the topic. If either of our daughters goes, it’ll be a genetic feat. But speaking of genetics, it’s always bugged me that so many kids with DS get elected prom king and queen. I know it’s not even Valentine’s Day, but this topic arose yesterday when I was telling a colleague about the Today Show basketball thing.

“Yeah, you don’t want your kid to be a mascot,” she said. “Like how they always elect the kids with Down syndrome to be prom king or queen. I hate that. It’s so insulting.”

This woman is considerably younger than I, so high school is fresher in her mind. And unlike me, she was probably considered cool — cool enough, as she admitted, to help engineer the prom king election of a kid who wasn’t disabled or anything, but really smelled. It was payback for the girl who was going to be prom queen — no one liked her. (Go figure, how’d she win?)

This woman’s point: It’s way worse to get elected for the wrong reasons, whether they be because you’re smelly and unpopular or because you’re the dorky kid with DS who high fives everyone in the hall.

I know, I know. I’m a real downer this week. (Which is odd, since I’m on such a high after Night Four of the Big Girl Bed. Borrowed time, I fear.) It’s one of those cases of overthinking, again. Really, if Sophie wants to be prom queen, I hope she wins. I guess. Honestly, I can’t say I’m sure I’ll feel that way. I’m willing to reserve complete judgement.

For the record, no, I didn’t get asked to prom. But I did come in FOURTH for Miss Olympian, which was our version of prom queen at Arcadia High School. I’m not sure I was supposed to know, only the top three were officially named; some kid in my English class was on student council and told me. True, I was in a lot of activities in high school, but I was also a total geek, so I’ll have to wonder my whole life why I got those votes at all.

I wonder if they’ll let Sophie on the speech and debate team. I wonder if she’ll want to be on it.


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Party Hat

The Simple Life. (Not Paris Hilton's)

posted Thursday February 5th, 2009

Just yesterday, my boss and I were rolling our eyes over all the writing contests we’re forced to enter each year — that endless search for approval in the subjective world of journalism. (Not so subjective now that you can count web hits — a dangerous direction. I’m fairly certain I have colleagues who sit home and click on their own stories again and again and again in a desperate grab at job security.)

But really, we’re all looking for approval, all the time. It’s why I was so excited last night when I opened Sophie’s backpack, took out her red folder and found a note inside. On the outside of the folded sheet, someone had handwritten Sophie’s name, and “Shhhh — this is a small kid party.”

I opened the birthday invitation, wondering, why would anyone care about keeping the fact that the party’s for little kids a secret? Then I realized, OH — not all the kids in the class are invited. But Sophie is. Someone loves her.

And I know that the little girl having the party does love Sophie. At least, I think she does. These things suck when you stop to think about them. Is the mom just being nice? Either way, I’ll drive the girls the half hour to ballet this Saturday morning, then grab Sophie at the end of her class, wisk her off to the party (another half hour) then back to get Annabelle from her class (another half hour) and back home (you get the picture, at least gas prices are down).

I loved the rush I got when I realized my kid — particularly this kid — was invited to this exclusive gathering. But then came the inevitable questions.

What would it be like to never have those questions? I suppose the very conceited (although even the most self-assured journalists I work with clamor to win contests, acting like they don’t care but occasionally showing their cards) could tell you. And so, I’m guessing, could Sophie. I don’t want to generalize, but isn’t that supposed to be one of the joys of having a developmental disability — not constantly doubting yourself and the world,  taking pride in your accomplishments and holding your head high?

The Simple Life. (Not Paris Hilton’s.)

I don’t know. I maintain (and fear) that Sophie will be just smart enough to know she’s not smart enough, and this morning I looked hard at that kid with Down syndrome on that Today Show segment about high school basketball and thought, Man, I hate this story. A lot. The kid filled water bottles for what, 9 years, so they gave him a few minutes on the court — and probably some gimmee shots? Here’s the piece:

http://www.msnbc.msn.com/id/22425001/vp/29030653#29030653

I couldn’t tell, looking at the kid’s face, if he knew. I hope not. He looked happy as his teammates ruffled his hair.

I hope Sophie has a good time at that birthday party Saturday.

I hope some insecure writers win some awards this year.

I hope someone hits me over the head so I can stop thinking about this stuff so much.


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Party Hat

"So, who does he look like? Amy or me?"

posted Wednesday February 4th, 2009

My parents came by last night to meet Jack and see the Big Girl Bed.

We were eating takeout when Ray came home from work, and amidst the flurry of hellos and congratulations, he asked, “So, who does he look like? Amy or me?”

It is true, Jack is like a third child — in more ways than I’d like. (Some involving excrement, others more significant things.) I felt a pang. Ray would love nothing more than a real, human son.

This presents a conundrum involving my age, my previous fertility issues, my lack of comfort as a pregnant person, and my fear about finances, space, attention for the girls and having another kid — a less healthy one — with Down syndrome.

Note the “my” in all that. Ray has no such concerns. I like to say, “Hey, shoot it out your butt and I’ll help raise it.”

That’s practically what happened with Jack. So now I’m helping to raise the black, furry son Ray never had. And I can see some sibling rivalry emerging, although it’s not really rivalry, and hasn’t really taken the form I thought it would.

From the start, Sophie has liked the thought of Jack, but she’s not been obsessed. He’s cute, she’ll say hello and pet him for a moment — then move on. Annabelle’s different. She sobbed when we couldn’t take him home immediately, talks about him constantly — in the abstract. Turns out, she’s not so sure what to do with the puppy in the moment.

Each morning since he’s been home, Annabelle’s gotten out of bed and instead of coming to the kitchen to see Jack, she’s parked herself on the couch in the living room (outside of pet territory) to watch TV. I’ve had to coax her to say hello.

I know how she feels. She’s tired, she’s just waking up. I’m not good for anything (or anyone) til I’ve had my first Diet Coke and a Claritin. I’ve had to adjust. You can’t tell Sophie to hold on half an hour.

Or Jack, which is how I’ve found myself in the kitchen so much. (To be fair, Ray’s doing the bulk of the puppy raising.)

Last night, something really funny happened. To back up, I’ll say that Annabelle’s pretty darn good about playing with her little sister. But if she’s got a distraction — particularly in the form of a new toy like an American Girl doll or a Nintendo DS, or, I’d assumed, a puppy — she’d rather do that.

But last night, Annabelle chose Sophie over Jack, and it wasn’t even a contest. After Gaga and Papa left, the girls disappeared into Sophie’s room, emerging with several bottles of nail polish (kept on a shelf I used to think was high enough for neither to reach) and a plan for Annabelle to give Sophie a mani/pedi.

“What about Jack? You haven’t played with him,” I scolded Annabelle — where normally I might have gently admonished her to play with her sister.

There was some eye rolling and whining and ultimately, compromise: The mani/pedi took place at the kitchen table, with Jack asleep at their feet, like a baby brother in his bassinet.


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Party Hat

First Night in the Big Girl Bed

posted Tuesday February 3rd, 2009

I had an odd dream last night. I don’t remember much about it,  just bits and pieces. In it, I was young and single. Hadn’t gotten married, hadn’t had kids.

I was dating, though. I had a boyfriend. We lived together, and in the dream, he was asleep in a big bed. Like in a movie, the “camera” zoomed in on his face and it was unmistakable: He had Down syndrome. 

I looked at his face and remembered that a lot of people had warned me that this relationship could never work. I felt anxious, that feeling you get in dreams where you think, “Oh shit, what have I done, walking naked into my high school cafeteria,” or “Jesus Christ, why didn’t I do my Italian homework for an entire college semester?”

And then I woke up. I looked at the clock: 7:15. Not only had Sophie slept in her big girl bed all night, she’d overslept by 15 minutes. In fact, it was so quiet in there, I wondered if she’d escaped in the night. (Not like her — Sophie would come directly to us if she did get out of bed — I think.)

Then I heard her. “Mommy!”

She didn’t sound anxious, just happy. She loves that new bed, even admonished Ray to get that crib out of her room, ASAP. I don’t blame her. She needs to show off her new rug and her “bubble” sheets. Although I had some trepidation, I highly recommend the IKEA child beds. And Dorcas the physical therapist gave it her mark of approval this morning.

Ray, Sophie, Dorcas and I all stood in Sophie’s room, admiring the bed, savoring the fact that Sophie’d stayed put all night.

Ray looked over at Sophie. “Hey, your panties are on backward!” he said. (I’d allowed it; she’s got a hot pink pair with Marie from Aristocats on what’s supposed to be the butt. Could YOU bear to not look at them all day???)

In unison Dorcas and I said, “She likes them that way!”

It was a good night, weird dreams notwithstanding. But I’m also a believer in beginner’s luck, so I know the nightmare may be coming as Sophie has at least seven hours, EVERY NIGHT, of time to wander, escape, make trouble, hurt herself.

And dream.


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Party Hat

Little Puppy, Big Girl Bed

posted Monday February 2nd, 2009

jack-home

It’s been a banner day. (Not for the poor Arizona Cardinals.)

Jack is home. He’s got a huge crate and several toys and he’s already peed in the kitchen four times.

The Big Girl Bed is home, too, but not in the Big Girl’s Room, not yet.

I took Sophie to IKEA today, BY MYSELF, and together we selected the bed (children-sized, cute, with sheets with bubbles on them) and although I was ready to pass out after the selection process — which was like a horror movie version of Goldilocks and the Three Bears (this bed is TOO big!) starring Sophie the Ball Buster – that was only the beginning.

When we finally got in the car and pulled out of the jammed parking lot, I felt like I’d walked 13 miles on a warm day, with a big blister. I’d managed to get both boxes of bed materials, the mattress, sheets and the other crap I couldn’t resist (including a magenta rug Sophie insisted on) in the cart, through the check-out aisle and then into the already packed-with-junk car.

If you know me (biggest wimp ever) you know that’s a big deal. And I did it with Sophie along — and she didn’t get lost or fall down the escalator or get her arm caught in the elevator door like the kid of a friend of mine did at IKEA once. (Seriously.)

I knew it couldn’t be perfect. It wasn’t. Ray’s in the middle of assembling the bed as I type this, and he just noticed he’s missing, oh, about a third of the materials. I checked on ikea.com and sure enough, the item I purchased has THREE boxes, not two, despite what the clerk promised.

So back to IKEA tomorrow. And — barring a lot of puppy whining — one last good sleep tonight.


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Party Hat

The Life of the (Birthday) Party

posted Sunday February 1st, 2009

bday-party-1

Considering she’s the life of the party, Sophie doesn’t get invited to many.

Maybe it’s just that people just don’t throw their kids birthday parties anymore. To me, that’s inconceivable (see: name of this blog).

In any case, it’s January, and Sophie’s been invited to just one birthday party this school year. I almost missed the invitation, it came home while I was in Portland and wound up in the middle of a pile. But I saw it, the white envelope with Sophie’s name on it in an adult’s cursive, and got excited.

I’m a nerd. I actually enjoy little kid birthday parties. Especially when my kid’s invited. And particularly when it’s Sophie. In pre-school, we had an awkward situation where Sophie was held back a year (or two, I lost track at the end) and that tight-knit group that had formed in her initial class moved onward and upward and left us in the dust, no longer inviting us to birthday parties and looking increasingly awkward when it came time to make conversation in the hall. I never really got to know the next group(s) of parents, and by that time Sophie was going to the public pre-school half-time and she never, ever got an invite out of those people (I think those were people who really didn’t throw parties for their kids).

Anyhow, wah, poor me.

I was excited. I thought hard about what to buy the Birthday Kid (I always bring the wrong present, particularly when it’s for a boy) and Sophie and I discussed attire.

A dress, she said. OK, that was fine. We found a cute dress, tights, sweater and shoes, all matching, but not too matchy matchy. By then we were out of time. (The search for non-girl wrapping paper took a while.)

“How do you want your hair?” I asked, knowing there would be a fight. There always is.

“I DO IT!”

No, I explained, Mommy needs to do it, asking for a preference: up or down. Down. I brushed it as much as she’d let me, then she requested a headband. Perfect! I had exactly the right one — sparkly hot pink. Too bad it wasn’t the right one in Sophie’s mind. She wanted a stretchy headband and she wanted to put it on herself.

And that’s how my kid left the house for her very first kindergarten birthday party looking like Andrei Agassi, or maybe more like a character in a Wes Anderson movie.

“Oh Sophie,” I said. “Are you sure?”

She was sure. I struggled the whole way to the park: Do I rip the headband off the poor child’s head to save her embarrassment when the kids refuse to come near such a geek? I didn’t. And the gods smiled on both our heads, or maybe Sophie simply wised up. More likely, the headband was bugging her. By the time we arrived, she’d taken the thing off herself.

A little disheveled, but looking darn cute, she approached the party. A bouncy castle was in action.

“There’s Sophie,” I heard a kid call, not knowing whether that was  good or bad. Followed by, “Sophie! Sophie! Sophie!”

The kids shrieked like she was a rock star.  It was good.

“Yeah,” Ray said when I told him later, “But did they really play with her?”

They did. They really did. I saw it myself. They bounced, then played tag, then played hide and seek and several of the girls sat together to eat hot dogs. There was girl drama when Zoe didn’t want to play with Bella (I get the names confused, so assume they’re wrong) but no drama with Sophie. Yes, she gave more hugs than the average kindergartener, and I’m not sure the intent conversations I saw her having with several kids were quite as they appeared from afar, but they really played with her.

“Sarah is so good with Sophie,” I said to Sarah’s mother. “Thank you.”

“Oh, Sarah talks about Sophie constantly!” Sarah’s mother replied, making it obvious there was no need for thanks.

Turns out, this was the first time all year Ms. X had even handed out birthday party invitations — or so she said when she arrived at the party to her own rock star welcome. I’ll choose to believe her. And to savor the day. Aiden even seemed to love the Star Wars Legos.

bday-party-2


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Party Hat

Easy Peasy!

posted Saturday January 31st, 2009

sophie-train

Ladies and gentlemen, time for a special announcement: Sophie’s made the fridge again. I just put a math worksheet from this week in a place of honor, right at the top.

It doesn’t appear to be much, at first glance, just some train cars with numbers on them. The last in each sequence of three has clearly been cut out and glued onto the paper.

Sophie comes home with stuff like that every day. But usually, ok, always, someone — Ms. X, a volunteer, even one of her classmates — has walked Sophie through the exercise, or maybe just done it for her when time’s run out.

Not this one! I almost brushed past it in a pile last night, til I noticed the note, followed by a more detailed email today from Ms. X.

Yesterday, she did that math worksheet ALL on her own.  I just handed it to her and she went to the table and completed it by herself with me not anywhere by her!!!! After completing the first two problems, she walked over to me to show me and smiled and said the words “Easy Peasy!!! ”  and marched back to her table to complete!!!  Today, she did an amazing job on her own too!!!!

I don’t know where the whole Easy Peasy thing started — I’m guessing with Ray — but that’s Sophie’s triumphant exclamation when she does something right. I know she must have been really excited.

Me too.

A side note, before we get too mushy, since I fear I already gave myself a cavity this week from my own post on “Rainbow Connection”.

Every time I hear Easy Peasy I immediately think, “Easy breezy beautiful, Cover Girl.”

There. I feel better. That’s been bugging me but I hadn’t told anyone. (And you won’t get it unless you’re of a certain age and watched a lot of television growing up.)


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Party Hat

Joel Weinstein, Famous Publisher

posted Friday January 30th, 2009

shawn-miller

I was in Portland last week for a sad occasion, although I’d like to think the subject of that sad occasion — a big fan of the place himself — would have been happy to know I thoroughly enjoyed my stay in his town.

Joel Weinstein hadn’t lived in Portland for many, many years. One of my best college girlfriends, Cheryl Hartup, took care of that in the early 1990s, when she swept him off to a series of cities — Austin, Dallas, Miami and most recently, San Juan.

I made it to Austin for a visit but sadly none of the others. When Cheryl came to Phoenix last April (she’s a bigwig now in the arts world, curated a show at the Phoenix Art Museum) it had been 10 years since we’d seen each other last, at my wedding.

Cheryl was here for a week, and it was only in the final 45 minutes of our visit that she admitted Joel was sick. Very sick.

He died October 31, and the next day, the Day of the Dead, Cheryl hosted an open house (complete with an amazing shrine including Joel’s famous red Converse) for their Puerto Rico friends. There were many, not surprisingly. These two have a fan club that literally spans the nation.

Count me in. Just a year or two out of grad school, when I first met Joel in Portland (he and Cheryl were introduced by the owner of a Latin American art gallery there, where she worked — tall and blonde, she’s The Gringa of that world, fabulously)  I was in awe. He published a literary magazine called “Mississippi Mud” — an amazing, happenstance (I say that because you never knew when the next issue would appear) collection of art, fiction and poetry, featuring ads designed by Weinstein himself, pre-computer age.

(The name has no relation, by the way, to Mississippi Avenue, as far as I know. The connection was to an old jazz song about stomping your feet on the Mississippi mud.)

So cool. Weinstein — who referred to himself as a “Famous Publisher,” tongue firmly in cheek – published Katherine Dunn before she was big. Each issue is truly collectible, which is why I’m glad I was able to purchase a few at the memorial held in Joel’s honor last week by the Oregon Cultural Heritage Commission.

The tribute was beautiful — Cheryl spoke, and so did Dunn, among others. But better still was the more intimate trip we took that afternoon to the cemetery, Lone Fir, where Joel is buried.

As I braced my own Conversed feet against the cold (it WAS sunny, for you Portland fans) Cheryl explained that Joel had loved this place, had walked its grounds repeatedly over the years, as do other artist friends who have even commissioned projects about it. (Portland’s that kind of town; people celebrate their history in very groovy ways. That day, we also visited some of Joel’s own public art projects.)

Cheryl pointed out Joel’s favorite headstone, belonging to a guy named Shawn Lee Miller Welsh. It looks like someone bought it at a swap meet — in a good way. Joel’s now buried just a few feet away, with a terrific view of the grounds.

I like to wonder what his headstone will look like…..


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My-Heart-Cant-Even-Believe-It-Cover
My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.
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