Scroll

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Scroll
Scroll
Party Hat

I’m feeling  guilty.

As soon as I read about President Obama’s gaffe on Jay Leno last night, I immediately began to make excuses for him in my head.

Then I had to stop and wonder how I would have felt if John McCain had said the same thing. I know how I would have felt.

I would have been freaking out.

McCain has said far worse, to be sure. And really, we should be judging our officials on their actions, not their words. Particularly words on silly television talk shows.

Still, I feel more than a little uncomfortable about my double standard.


Scroll
Party Hat

partygirl1

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.


Scroll
Party Hat

Arizona Legislator Linda Gray is the "R" Word

posted Thursday March 19th, 2009

Boy, do I wish I used that word disparagingly. Because it really applies here. Just the other day, an out-of-stater remarked (again) that she just doesn’t understand my state of Arizona — a place where you can have Down syndrome but not qualify for services for the developmentally disabled.

Yeah, I don’t understand it either. Maybe State Senator Linda Gray would care to explain. I try not to directly mix work in with Girl in a Party Hat very often, but check out the post on Phoenix New Times’ blog today about a letter Gray wrote in response to a high school student who had the audacity (in Gray’s view) to write to her questioning the state’s decision to cut education funding:

http://blogs.phoenixnewtimes.com/valleyfever/2009/03/senator_linda_gray_apologizes.php#comments

Be sure to click on the blog post after that, where Gray apologizes and reveals that the student is special needs. What’s Linda Gray’s excuse?

Arizona is a great place to be a journalist (you can’t make this shit up) but it can be a really lousy place to be a human being.


Scroll
Party Hat

Found

posted Thursday March 19th, 2009

piglet-found

Last night, our household’s attention was focused on making on the horse for the kindergarten rodeo, which was due this morning.

But I did devote some time to a surreptious search for Piglet. No luck.

It wasn’t til she went into the bathroom to brush her teeth before bed that Sophie stopped like a light bulb had gone off over her head, opened the lid of the step stool (why does that step stool have a lid– it drives me crazy, I’m getting rid of it, I never think to look in there!), and pulled out you-know-who.

Big grins all around.

“What was she doing in there?” I asked as Sophie climbed up to brush.

“Piglet take a bath.”

“OK,” I answered, eyeing Piglet’s gray grossness and planning a real one soon. “She looks good. Let’s get to bed.”

But even a good night’s sleep with the favored pig failed to alter what I later learned has been a couple days of bad behavior.

“Boy, was she ornery!” Dorcas, the physical therapist announced, emerging from Sophie’s room this morning just in time for us to hop in the car and get to school.

Sophie stuck her tongue out at Dorcas.

I was horrified. Dorcas hopped in her own car and sped away.

I shook the mood — at least temporarily – by blaring “Baby You Can Drive My Car” — currently Sophie’s favorite Beatles song — as loud as I could, for the short drive to school.

“I’m going to sing!” Annabelle announced. Normally that makes Sophie mad — in the car she tells us both to be quiet, and not to dance either! — but this morning I turned up the volume and sang my heart out. Annabelle did, too. By the time we got to the stop light (half way there) both girls were cracking up, manning their own pretend steering wheels and singing.

The song ended just as we pulled into a parking spot, and we proudly carried “Sophie Belle” the horse into school — where Ms. X informed me that yesterday Sophie pulled a sticker off one friend’s chest for no reason, and crumpled the paper of another. She got a time out and cried and then was better.

Third day back from spring break, Ms. X explained. She had a lot of melt downs yesterday. I hope today’s better.

If not, I highly recommend an impromptu Beatles dance party.


Scroll
Party Hat

Lost and Found

posted Thursday March 19th, 2009

lost-piglet

Piglet is lost.

Now you might assume that this is not a big deal, as you admire Sophie’s stuffed animals — here’s a line up from this morning — including all the pigs and variations of Piglet. You would be wrong.

In fact, Sophie owns three wind-up musical Piglets — designed by Gund, all grasping purple butterflies — but to Sophie, not all Piglets are created equal.

One is at school. One has a green sticker with her name on it. The missing one has a purple sticker. Sophie can tell the difference blindfolded, just by letting the tip of her finger graze the tip of Piglet’s ear. I know. I’ve tested her.

We were shocked she fell asleep at all last night, without Piglet With The Purple Sticker. I know it’s just a matter of time before there’s a major meltdown.

So if you see Piglet, let us know.

In much better news, here’s what Sophie found: Reading!

Sophie loves homework. (Probably because Annabelle always has it. Annabelle does not love it. I wouldn’t, either, if I got all those math worksheets.) So when Sophie comes home with a book to read to us, she’s thrilled.

But she doesn’t always do so well with it, even though it’s a book she’s already read in reading group with Ms. X. Particularly if we wait til bedtime, she’ll get a few words, but for the most part really struggles. We’ll make it through the title on the cover, then turn the page and she’ll stare blankly at the title page — even though the words are the same.

I remember when Annabelle learned to read. It just happened. I spent a lot of time thinking about that switch that goes off in your head when you “get” that the word on the page refers to SOMETHING — that heady feeling that suddenly, literally, you hold the world in your hands. (Depending on the book, of course. Some books, not so much.)

With Annabelle it happened quickly. With Sophie it didn’t, and I was beginning to wonder if it ever really would, particularly when just a couple weeks ago, Ms. X said Sophie would learn to read by memorizing sight words, rather than phonetically.

Last night, in the flurry to find Piglet and comb tangled hair (I swear, my kids are starting to look like sister wives — time for haircuts!) I forgot about the book. Uh oh. I grabbed it and grabbed Sophie and hit the couch.

And she got it. I think I’ll always remember this book, the way I remember my first French dialogue – and the only French I remember — from high school (Bon jour, Alice! Bon jour, Phillipe! Ca va? Oui, ca va. Et toi? Pal mal.).

For posterity, the title is “Is it for me?” by Jodi Lee, illustrated by Laura Freeman — “Decodable Book 10″ by Harcourt. And you knew this was coming, so here:

It is a red box. Is it for me? No, it is not.

It is a big box. Is it for me? No, it is not.

It is a tan box. Is it for me? Yes, it is.

It is for me. It is a cap!

Yes, she had trouble with a couple of words, like red and cap, but with help she sounded them out. She read entire lines at a time, then insisted on reading the book to Ray when he arrived home from a bike ride.

The best part was that Sophie grabbed my arm and dissolved in happy giggles — the kind that take her breath away, and mine, too — every time she finished a line.

Now, it’s true that she also dissolved in giggles this morning when, at her behest, she and I pretended to light candles and sang “Happy Birthday to Sophie” a half dozen times. Each time she solemnly put her hand on her chest, savoring the moment like we were in front of a big chocolate cake and all her friends, rather than in our PJs on the bed. Then the giggles.

But I think she knew how special the moment was last night. I think she “got” reading.

I ran to text Ms. X. The phone rang immediately. She was beside herself.

“I had to call and tell you that Sophie never read that book today! She missed reading group!”

I remembered that Sophie had been late; we were getting her feet cast.

“She read that all on her own!” Ms. X practically yelled.

I told her about the giggles and she said that’s what all the kids do when they figure it out. We had some giggles of our own and Ms. X made me promise to apologize to Robert Polk since Sophie was clearly reading phonetically.

That time, at least. We’ll see how reading homework goes tonight. But first, we’ve got a horse to make for the Kindergarten Rodeo. And a Piglet to find.


Scroll
Party Hat

Some St. Patrick's Day Magic

posted Tuesday March 17th, 2009

Ms. X called last night.

“Leprechauns came to my classroom!”

“Really?” I asked, just a split second before I got it,  even though I had a St. Patrick’s Day plan, too. I’d bought gold-wrapped chocolate coins (AKA Chanukah gelt) to put in the girls’ shoes, because Annabelle had told me a few weeks ago that on St. Patrick’s Day you leave your shoe out overnight and the leprechaun puts a gold coin in it.

For all my love of holidays, I haven’t ever really gotten into the St. Patty’s thing. My memories of the day involve vomiting green beer and getting pinched because I refuse to dress in anything but black. I thought Ms. X had told Annabelle about the coin in the shoe, but when I asked her for details yesterday, she swore ignorance.

Maybe it was my mother in law. She was 100% Irish, making the girls a quarter each, and even if I can’t make a corned beef (not that I recall my MIL ever doing that) I figure I can honor her memory by celebrating St. Patrick’s Day. (And her name was Patricia — making it even more appropriate.)

Anyhow, I was out last night at a friend’s book signing and had to frantically call Annabelle to remind her to put out her shoe.

“Now, which one is it?” I asked. “The left one!” she reminded me. When I got home, she’d put left shoes out for the whole family. And she left a note (I was flustered, trying to write a response — even though I should have predicted this, given her Tooth Fairy proclivities) asking: What is your name? (“Larry”); What is your favorite color? (“Green”); and Why do you put coins in our shoes? (“Because you’re good girls!”)

st-pat

As an after thought, I sprinkled some glitter on the note and the shoes. (No one noticed I’d spelled leprechaun incorrectly; I just realized it myself, damnit. And Annabelle brought the letter for show and tell!) Both girls were thrilled.

Which is good. I figure we can use a little magic around our house. The pixie dust from Disneyland has worn off and with Spring Break over, the slipperly slope into the End of the School Year and Summer has begun.

For us, here in too-sunny Phoenix, anticipating summer is akin to bracing oneself for multiple snow days, only without the benefit of outwear to stave off the elements. Here, you just grin and bear it and try to get out of town as much as possible.

But it’s still March, so I’m going to do my best to put that out of my mind. Trust me, there’s plenty to displace it. Yesterday I was on the phone with Sophie’s occupational therapist for an hour. She was reading regulations on the Web, trying to convince me that Sophie’s IQ won’t dictate whether she continues to get services — until she got to the part in the regulations where it says just that, and abruptly changed her mind.

“Yeah, I knew that,” I said wearily. It’s not her fault, she was only trying to navigate a system no one seems to be able to navigate. She did confirm that if Sophie loses state authorization, our private insurance will ditch us on the therapies, too.

Super.

So the gold coins made a nice distraction. And I couldn’t wait for Sophie to see Ms. X’s classroom — with the overturned chairs, shamrock stickers, hidden notes and leprechaun footprints.

Too bad I forgot about the appointment to get her feet cast. It wasn’t til I was turning onto the freeway this morning — having left Ray to bring Annabelle to school — that I realized Sophie would miss the whole leprechaun thing.

I’d been rescheduling this appointment for months (literally). Since before she could walk, Sophie’s been wearing foot braces. For a while, she wore them constantly. We’ve gotten bad about putting her in them, now that she can walk easily on her own. (To be honest, her feet still do cave in at the ankles, but you know, so do mine, a little.) The braces really restrict her shoe choice — leading to many a pity party for me in the days when all Sophie could wear were clunky white sneakers.

But the truth is that she probably would have walked at 5 instead of at 3, without that extra support. She needed the braces — still needs them sometimes — and I’m grateful to our physical therapist (yeah, the one we’ll likely lose because Sophie’s IQ is too high) for pushing for them.

This time, the physical therapist assured me that Sophie’s ready to ditch the clunkier braces for a custom-fitted insert that will fit in just about any shoe. Like I said, I’d been putting the appointment off forever. So I pushed past the desire to turn around and go back to see the leprechaun’s work, and we went to deal with Sophie’s feet.

The guy who cast Sophie’s feet (less painful than it sounds) was very nice, although when I pointed to a poster on the wall of a kid with a helmet  and started asking questions, he ignored me.

I guess I was asking loaded questions. Warning: Here comes a Great Big Aside.

Sophie wore one of those “doc bands” when she was a baby. You might have heard of them, they’re now very popular.

Not so long ago, when your baby’s head was misshapen (often an unintended byproduct of back sleeping, which is done to prevent Sudden Infant Death Syndrome) doctors would actually operate. Then a smart woman discovered you could make a helmet that would round out the head with no invasive procedures.

Sophie wore one. It didn’t work. Now, the main reason it didn’t work, I think, is because the helmet rubbed a raw spot on her head and she wasn’t able to wear it enough. But I also think it didn’t work because she has Down syndrome, and like many people with DS, the back of her head is very flat. The poster on the wall at this orthotics place had pictures of three babies and their misshapen heads: One looked just like he had DS. (This was not, by the way, the place where we got the helmet Sophie wore.)

So my question was, can you make the head of a baby with DS less flat with one of those helmets, or is that just how the head is going to be? And secondarily, does it matter? (Sometimes there are serious brain issues associated with the flattened/misshapen heads.)

The guy completely blew me off. He didn’t even say, “I don’t know.” He just ignored me. I didn’t pursue it. Really, I was just trying to make conversation, although it issomething that’s been bugging me.

But that didn’t bug me as much as what the guy did say.

That prescription for the shoe insert? “No, that won’t work,” he said. Not because that’s not what Sophie needs. “Insurance won’t cover it unless the brace comes up above her ankle,” he explained.

He didn’t even mention the price tag, which means these things are nowhere near affordable.  

And so Sophie picked out a new pattern for yet another set of plastic braces (I urged her toward “Dark Sky” instead of soon-to-be-dirty white with teddy bears) and we headed to school.

She’d missed the initial excitement of the leprechaun’s visit (Ms. X’s leprechaun is appropriately named “O’Reilly,” making me realize how dumb “Larry” sounds) but the kids were running around putting stickers on each other and drawing pictures, still excited by the discovery.

Sophie mixed right in, telling her friends about the gold coin in her shoe (‘The whole family!” she said) and running to get her journal and show me the carousel she drew yesterday.

Then Ms. X had her show me something else: Sophie’s been writing down her sight words (“in,” “the,” “go,” “to,” etc) herself, spelling them correctly and everything.

Ms. X looked at the book, then looked at me. “Now I’m going to cry,” she said.

It was pretty magical.


Scroll
Party Hat

Out of the (Down syndrome) Box: "Shorty"

posted Sunday March 15th, 2009

Not long after Sophie was born, I wrote a piece for Phoenix New Times (you can read it here: http://www.phoenixnewtimes.com/2004-11-25/news/up-the-down-staircase/) in which I mentioned that I am the kind of person who put a button on her bulletin board at work that says, “If at first you don’t succeed, you’ll be a loser and a burden on society forever.”

The button’s still there; I never took it down. But I like to think that Sophie (and Annabelle — motherhood in general, really) has tempered me in that regard.

I reconsidered that as I watched the credits roll after “Shorty,” a film released in 2004. A couple days ago I dug around in the Down syndrome box and came up with the choice of a documentary about a man with DS who loves porn and wrestling or a documentary about a man with DS who loves football. I chose the latter. (Hey, where’s the documentary about the woman with DS who loves Diet Coke, “Project Runway,” oilcloth and vintage beads? This is unfair!)

It wasn’t without its redeeming qualities — hard and heavy-hearted as I am, I can’t deny that — but I wasn’t a big fan of “Shorty” the documentary. Shorty the man, a 55 year old guy named Walter Simms, now that’s a different story. He seems like a perfectly delightful person.

But being perfectly delightful doesn’t qualify one to be the subject of an 86-minute documentary, in my book, even if the guy is developmentally disabled and even if the big football game of the year happened to fall one year on his birthday.

Remember the kid from that Today show segment we debated about a few weeks ago, the one who got to play for a few minutes in a high school basketball game, after — what was it, nine years of being the water boy? In some ways, that kid got a better deal than Shorty.

Maybe. To be fair, there’s no discussion about whether Shorty ever actually did want to play football. In all, Shorty appears to have a pretty terrific life, particularly for someone his age. Back in that day, parents didn’t necessarily keep their kids who had DS (hello, Arthur Miller — nice. You know about that, right? Here: http://www.vanityfair.com/fame/features/2007/09/miller200709.)

So the Simms family gets points, particularly since they founded a facility designed to keep Shorty and his peers nicely occupied. When Shorty’s dad had the opportunity to take a job at his alma mater, Hampden-Sydney, he and his wife (now, sadly, both dead) debated whether Shorty would have a good life there.

He does. No doubt about it, as revealed again and again and again in, frankly, repetitive and borderline (though they really never do cross the line, I think the repetition is what got me) condescending interviews with coaches, players, family members and Shorty himself.

This film would have been much better at 30 minutes — though I admit my lack of interest in football should be taken into account.

Here’s my problem, football aside: We’re supposed to celebrate a community that’s nice to this very nice guy with DS, that lets him paint doors and walls that don’t really need to be painted and go along to football games and cheer the kids on. I couldn’t tell whether there’s an overtly religious deal with this college, or if the folks there just like to pray a lot, but clearly they feel they’re doing the Lord’s work. That’s fine. I”ll assume they’d be nice to Shorty even without the threat of  eternal damnation. Overall, it just didn’t seem to be much of a reason to make a film.

Or maybe it is. And that terrifies me. In some ways, I hope that when Sophie is 55, people are so nice to her and in return she’s so delightful that someone wants to make a documentary about it. Maybe by then it won’t be such a big deal. Somehow I doubt that.

My favorite part of the film was the music, particularly the theme song, a nice instrumental by a group called The Beatsmiths.  Then I saw the song’s title during the credits: “Sweet Illusion.”

For sure, I’d be a much happier person if I could simply watch a movie and celebrate one man’s life, simple or not — mascot or not. Right now, at least, I’m too busy trying to look behind every potential illusion for the truth.

Is the truth ever a lot simpler than I make it? Who knows. Up next: wrestling, porn, and Down syndrome.


Scroll
Party Hat

Google, Facebook and Dopey

posted Saturday March 14th, 2009

Sometimes google really takes the fun out of life.

For a nerd, anyway. As previously revealed on this blog, yes, I was a member of my high school’s Speech and Debate team. (I believe I’ve already admitted I went to a debate tournament the night of my senior prom.) I’m old enough to remember the world pre-Internet, and even pre-personal computer. I actually enjoy going to the library to do research — not that I do much of that anymore, I’m as lazy as the rest of the world. I google. Sometimes I even use Wikipedia.

Back in the day, it would have taken days or weeks or at least a phone call to answer the question, “Does Dopey have Down syndrome?”

These days, it takes a google search. When I didn’t hear back from the fairy tale scholars I emailed the other day, I had an epiphany: The Dopey thing must have been a Disney creation. One of the smart copy editors I work with confirmed that was the first time the dwarfs had names, so a few minutes ago, I googled “Dopey” and “Disney” and hit the motherlode.

I’d like to think that perhaps this information is false, that someone involved with one of the original fairy tales that eventually became Disney’s Snow White had a relative with Down syndrome or some other exposure to it, or maybe that someone at Disney did, and that the coincidental features on Dopey really aren’t coincidental. But the explanation on the Disney archives makes some sense — though I’ll offer the caveat that it is awfully politically correct.

Anyhow, here it is, from http://disney.go.com/vault/archives/characters/sevendwarfs/sevendwarfs.html:

Dubbed “Dopey” by his brothers, this loose-limbed dwarf has never spoken a word; as Happy explains to Snow White, “He never tried.” But Dopey isn’t really dopey, he’s just childlike. Is it dopey to try and steal a second and third kiss from Snow White on your way to work, or to make yourself tall enough to dance with her by climbing on Sneezy’s shoulders? Not at all. Dopey’s a genius at fun and games (and a whiz at the drums to boot). He just doesn’t mind looking silly along the way. So what if he wiggles his ears and shuffles his feet to his own skippity-skip beat? He’s simply being himself, and that’s pretty smart.

In the early development process on the film, Dopey was the “leftover” dwarf with no particular personality. Then one day animator Ward Kimball discovered vaudevillian actor Eddie Collins at a Los Angeles burlesque house. Kimball invited the baby-faced Mr. Collins to the studio to perform and improvise pantomimes of Dopey’s reactions on film. Thanks much to Collins’ innovative acting, Dopey assumed a very definite personality and soon became one of the animators’ favorite dwarfs. Collins’ pantomime turned out to be one of the first times live-action reference footage was shot for an animated film. The technique proved so successful that it’s still used today. The inspiring Mr. Collins went on to perform live-action reference for Gideon in “Pinocchio” (1940).

So then I googled “Eddie Collins” and “Dopey”, and do you know what I got? A Facebook page for “Eddie Collins Dopey,” complete with an illustration from the Disney cartoon.

That just made me think about how much I hate the Facebook redesign. Really, WTF? Facebook is the one place I can go (well, could go before today) and not have to think. Now I can’t figure anything out.

And I’m still not entirely convinced about Dopey.

Please, web gods, just don’t let them redesign google.


Scroll
Party Hat

Mouse in a Party Hat

posted Friday March 13th, 2009

I’m sitting perfectly still at my computer, but the room is rocking — back and forth, back and forth, back and….

It’s not a completely unpleasant sensation, which is good, since I’m not sure how long it will last. I do know how it started. I knew better than to agree to ride Mulholland Madness — a roller coaster my husband describes as a “baby ride,” but definitely the most intense one I’ve been on since a bad Space Mountain experience in college — but Annabelle’s face lit up when she suggested it and I agreed.

This was our fourth trip to Disneyland as a foursome. It’s an interesting way to mark both girls’ growth. The first year, Sophie wasn’t walking, and Annabelle was too short for any of the rides. Last year, Sophie wasn’t potty trained, so each time we met a character, I asked the character whether he/she/it used the potty. Some didn’t appreciate the question, but most played along. (Looking back, I sort of can’t believe I did that. Hey, desperate times call for desperate measures. For whatever reason, Sophie was potty trained by the end of the following week.)

This year, tastes definitely had changed. There are still rides girls both want to do, but Sophie’s not tall enough for the roller coasters. And this time, Annabelle wasn’t into the princesses, so I took her to stand in line for Tinkerbell and the other fairies while Ray and Sophie waited for Snow White. (I have no idea where the Snow White obsession came from — and no, I don’t think it has anything to do with Dopey! More on him later, I hope; I have some requests out to fairy tale experts to try to get to the bottom of this.)

For much of the trip, Ray and Annabelle teamed up for the big kid rides, while Sophie and I waited for Pooh and Tigger, or partied in the Tiki Room. The last day we tried to mix it up, and in our final moments, I really threw caution to the wind and got on that roller coaster.

“Don’t worry, Mommy, you can hold my hand,” Annabelle said, advising me to keep my eyes shut and announcing the big drops are “yummy” when I casually mentioned afterward that they’re not really my thing.

So it was worth it. But I’m having a little trouble concentrating today. Back and forth, back and forth, back and forth.

Wait, where was I?

mouse-hat

I knew it would be a good trip when we walked into the park and the first thing we saw was Mickey Mouse wearing a party hat. There were party hats everywhere — teeny tiny hats on top of this year’s edition of the mouse ears; big upside down hats filled with flowers, decorating the lamp posts on Main Street; hats on the popcorn boxes, cups, paper napkins.

Sweet.

This year we were, at times, part of a large group of various friends – including Sophie’s Ms. X! — which sometimes presented challenges (have you ever tried to make a decision at Disneyland with 12 people in your party?) but ultimately made it a much better trip. Our little family tried a lot of things we hadn’t tried before.

But time was short, and we found ourselves rushing to cover our favorite bases. By the end of the second day, I was in a mood so crappy even a margarita (yes, they sell booze at California Adventure, the park next to Disneyland — very good to know) didn’t make a dent as I rushed to get Sophie over to the last performance of the day of Playhouse Disney.

Now, part of this, I know, was because of The Game. Ray and I have played it since our first trip — I wrote about it in the Tomorrowland piece I posted the other day. We keep an eye out for people with Down syndrome. As I wrote earlier, the Happiest Place on Earth attracts the (allegedly) Happiest People on Earth.

When you refuse to join a support group, you do a lot of surreptitious staring. I know this is not healthy. But I do it anyhow. Ray and I agreed this time that we don’t stare as hard anymore; as Sophie gets older, it becomes easier to imagine the adult she’ll be. But still, walking through the park, Ray would call out, “Hey, hon! Two o’clock!” And I’d rubberneck to check out our possible future, dressed in a red sweater with bobbed hair.

I’d only seen a few people with DS so far (attendance was clearly down overall at Disneyland this year — even Mickey’s not recession-proof, I guess) but while Sophie and I were waiting outside the Tiki Room, I had noticed an older woman with what were obviously her twin sons; both had Down syndrome, and both appeared to be fairly low functioning. The situation looked pretty grim, and I admit that it put me in a funk for a while.

Sophie, on the other hand, was all smiles. And she’s developed a little habit I’m not so fond of — randomly hugging strangers. For the most part, the strangers love it. I wanted to strangle the middle-aged woman who actually picked my daughter up and held her as I struggled to get her back; I know people are just trying to be nice, but hasn’t anyone else ever had to teach a child about Stranger Danger?)

By the time Sophie jumped out of the stroller and ran to hug a Playhouse Disney employee named Heather, I’d pretty much given up on stopping the hugs, as long as the person looked safe. (And don’t worry, I wasn’t drunk. I’d had way too much soft pretzel to catch a buzz.)

Heather was thrilled. She and Sophie chatted for a while, then I turned to get in the now-substantial line.

“Hey,” Heather said, “why don’t you and Sophie come inside the white rope?” This was clearly the “preferred seating” area. Or, as I silently and instantly named it, the “f-ed up kid” area. Another woman was already waiting there with her kids — I eyed them, trying to figure out which one had the diagnosis, and what it was. My heart sank for a minute, but I couldn’t deprive Sophie a front row, center seat — which I was pretty sure we’d get. (We did.) 

Still, it was a little weird when Heather called all of her fellow employees over one by one to meet Sophie, who was now standing behind the white rope, sort of like she was — well, sort of like she was in the zoo. “Look! Look! This is my friend Sophie!” Heather said, and Sophie obliged by hugging everyone.

I was beginning to wish I’d been the one to take Annabelle on California Screaming. (Turned out she was still too short for that one, she never made it on.) But Sophie was having a ball. We saw the show, she was thrilled, and I had to admit that it was nice to get preferred seating.

As we were walking out, Heather stopped us and offered to get Sophie and me into the VIP area for the parade, which was about to start.

“OK,” I said, “that would be great. But, um, we’ve got a party of 12.”

She said that was fine. It made think of the time the ranger at the Petrified Forest told us Sophie and her family can get into all the national parks free, for life, explaining when I turned her down that it meant families would never leave their disabled loved one at home.

For the record, I’d bring Sophie to Disneyland any day, VIP section or not. But it was pretty nice to be able to call Ray and say, “Hey, tell everyone to head on over! Wait til you see what Sophie got us!”

Sophie was oblivious. She was looking for more hugs. While we waited for Ray et al, she spotted another Playhouse Disney employee, and ran up for a hug.

This one was not much taller than Sophie. His name was Teo; he’s a little person. (I swear, I’m not making this up. I know, I was just writing about midgets and dwarfs!)

“How old are you?” Teo asked Sophie.

“Five,” she answered. “Are you five, too?”

Teo looked sad. “No, I know I look like I’m five,” he answered. “But I’m not.”

Sophie hugged him again.

It was one of those magical southern California days with bright sun and a cool breeze, and the parade was short but sweet, with all the Pixar characters. Sophie was really excited. We all were.

After the parade, both Heather and Teo came over to see if we’d had fun. They both admitted they’d had really rotten days (“My first bad day at Disneyland in three years!” Heather said. Turned out that other mom and her kid had been nasty to Heather earlier, which is why they were getting preferred seating.) and when I tried to thank them, insisted that Sophie deserved all the thanks.

I felt my bad mood melt away.

sophie-heather-teo

We left Heather and Teo (after several more hugs) and headed back to Disneyland for a few more rides, realizing we were all tall enough to ride the cars at Autotopia.

Standing in line, I spotted an older guy with Down syndrome. He was with another man; I don’t think he had DS but maybe some other kind of developmental disability.

I couldn’t stop staring at the guy with DS, and not because I was worried about Sophie’s future. To the contrary. I couldn’t hear what he was saying, but this guy in his cardigan and jeans looked so confident, so content, so wise, standing there chatting with his friend. I had this weird, overpowering sensation that I was staring at the smartest person at Disneyland.

I wanted to talk to him, or at least try to overhear his conversation, even though that’s not typically part of The Game. But it was our turn in line. So instead, we got in our little cars and sped away.


Scroll
Party Hat

Of course there are no new thoughts in this world.

I’m home from Disneyland (more on that shortly) and determined to answer the Dopey question. I began my research with google, because as Annabelle said recently, “The Internet knows” and up popped this really nice post:

http://the-extra-gene.blogspot.com/2008/02/dopey-has-down-syndrome.html


Scroll
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.
Scroll

Archive

Scroll
All content ©Amy Silverman | Site design & integration by New Amsterdam Consulting