Party Hat

Love Letter to A City

posted Thursday September 24th, 2009

bop

Some days I feel it more than others, but most of the time I can tell that having kids — and yes, in particular, having a child with special needs — has changed me.

I’m not saying (nor would some people who know me say) that I’m any nicer. I still have a button on my bulletin board at work that reads, “If at first you don’t succeed, you’ll be a loser and a burden on society for the rest of your life.”

The best way I can describe it — to crib myself, since I’ve written this before — is that having Sophie made the world go technicolor. Or HD, to use a more up-to-date description.  

But there is something else that’s changed me, too. It’s certainly not monumental and heartbreaking and impossibly joyful — like having and raising my (I mean our – sorry Ray!) kids — but it does take up about nine months of the year.

It’s called Best of Phoenix.

A few weeks after Sophie was born, I grudgingly gave up the freedom and (relative) starpower of being a staff writer at the paper where I work for the behind-the-scenes (relative) drudgery of being an editor.

The new job came with a more regular schedule, and it was clear my bosses thought it would be a good fit for the mom of a kid about to have heart surgery. (Not that they ever said that — everyone was very gracious and to be fair, most do consider an editor position here a plum.)

The new job came with one responsibility that horrified me: editing our annual Best of Phoenix issue.

Best of Phoenix — or BOP, as it’s known in the office — is a beast, a guide to everyone and everything in a metropolis you may not realize is the fifth largest in the country.

And, I might add, a metropolis I’ve made a habit of hating. I’m not the only one: People love to loath this city. Hard to blame them — particularly in the summer, which is when the bulk of BOP is created.

This is the fifth Best of I’ve edited, and the funny thing is, this is the first year I haven’t found myself gritting my teeth. Not that I didn’t bitch and moan about the workload, but this year, something was different.

It might have been the fact that we have a really great, committed group of people working on BOP. Or it could be that the theme — Wonderland — was a lot of fun. The art is beautiful, the writing is great (though I’m terrified I’ll hear about typos) but more than that, I think something has happened.

I think I might be falling in love with this city. Having to find a bunch of stuff (and we really do need a bunch — ours is one of the largest “Best ofs” in the nation, at more than 300 pages) to brag about can make you really happy or really depressed. This year I actually took pleasure in it.

My favorite part is the idea we came up with to supplement all those little paragraphs about “best slice of pizza” and “best place to hike with a small dog”. We decided to have an art show. We made a list of the most creative, interesting people we know in town — visual artists, musicians, cooks, writers — and asked them to create their version of Wonderland. We put the 31 results in the paper and on October 2, we’re having a party to show them off in person.

A party for Phoenix. I hope you come (if you live nearby) and check out the art, which absolutely blew us away. (“Goosebumps!” was a frequent term screamed in the office, when a new piece came in.) It will be for sale, and will benefit both the artists and a cool art program for the homeless.

Funny, I realized after we made our list that we could have doubled or tripled it, easily. This city is teeming with talent. Our DIY aesthetic for the issue (lots of torn paper, cutout letters) wound up being about Phoenix itself — a place that came late to the handmade movement, but is now doing it in style.

No, you can’t compare the joys of the day job to the blow-me-back-against-the-wall joys of parenting. But sometimes there are rewards, if you stop and look for them. Today I realized that Best of Phoenix has put a rainbow behind my hometown.

The city is changing. It’s growing up. And maybe I am, too.

If you made it all the way to the bottom of this odd rant (or is it a rave?) here is a treat: a link to the song the band psych 101 created just for our issue — and our city. They’ll perform live on October 16, as part of the Wonderland show.


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Party Hat

climb1

Good thing I was off eating tofu last night with my dear friend Trish, because I’m a big chicken when it comes to the kids taking risks.

I’ve grown accustomed to seeing Annabelle scamper to the top of the wall at the rock gym around the corner from our house, but I wasn’t prepared for the email that popped up as I was getting ready to leave Trish’s last night. The subject line was: “Sophie can climb” but on the small iPhone screen it looked like that was Annabelle halfway up the wall.

Everyone was alseep by the time I got home.

“Hey!” I stage whispered, and Ray rolled over. “That wasn’t Sophie in that photo, was it?!”

“Yes!” And back to sleep he went. This morning he offered more photographic proof, taken by Annabelle while he belayed the world’s newest rock climber. Up until last night, Sophie would do one move (which would get her about three inches off the ground) and stop. Last night was a breakthrough. I’ll shut up and let you enjoy the pictures.

climb 2aa

climb 2b

climb cclimb2


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Party Hat

Tilting at Pinwheels

posted Monday September 21st, 2009

pinwheel

So there’s hoarding where you can’t make a path through your house to get to the bathroom (I’m not there — yet) and then there’s the kind of hoarding where you find something super-cute and save it for a special occasion.

Such was the case with the pinwheel straws. I don’t know where or when I bought them, but there they were – stuffed in a cabinet, waiting for just the right event, the perfect celebration.

Since I’ve taken to “shopping in my house” lately, I decided to make a bold move. I stuck the pinwheel straws in the run-of-the-mill, every day straw jar and used them randomly in the girls’ morning and evening Carnation Instant Breakfast (a genius invention) shakes.

The girls loved it.

This weekend I used the last of them, and despite a pang or two, I’m glad. Now I can break out the straws decorated with even-cuter vintage-looking cardboard cutout animals that I’ve probably been hoarding even longer than I hoarded those damn pinwheel straws.

The best part: I spotted the vintage-y ones at Smeeks, so when they’re gone, I can get more if I really, really  need them. (Need — ha!)


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Party Hat

The Church of Dance

posted Sunday September 20th, 2009

Lately, I’ve been telling people that Annabelle won’t be going to religious school this year because she’ll be attending the church of dance, instead.

I’m not really kidding. This year, Saturday morning class has been joined by Wednesday afternoon class (this time with my mom, who runs the studio — how could I resist?) and if she gets a part in the Snow Queen (a Nutcracker alternative run, again, out of my mom’s studio) it’ll be Sunday afternoon rehearsals, too, all fall.

The temple we’d join is quite relaxed, but requires third graders attend school on Sunday mornings and Wednesday afternoons. Too much.

That’s okay.

As I write this, Dirty Dancing is on TV in the background. Patrick Swayze (RIP) never really did it for me, but boy, did I (do I) love him in that movie. And Jennifer Grey, even if she did eventually cave and get the nose job.

I’m thinking of playing hooky from work Friday morning, after Sophie’s IEP meeting (it’s finally been scheduled) to see Fame, though I’m quite concerned the remake will ruin a truly perfect original.

For me, the dance parties are pretty much limited to my kitchen, unless there’s a great deal of alcohol involved. That’s okay. In my imagination, I make it into the Fame school. Johnny and I do the mambo — perfectly.

That’s not to say either of my girls are destined for the stage. That’s okay, too, because it’s the pure joy that dance brings to both of them — that’ I’ve always seen it bring to my mom — that brings me to my knees.


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Party Hat

Temple of Doom

posted Saturday September 19th, 2009

It smelled like poo in temple this morning, but that’s understandable, since we were at the children’s service.

I’ve been meaning to take the girls to a “tot shabbat” forever, so I was pleased when my dear friend Kacey mentioned her family would be at the Rosh Hashana service. We tagged along, joined by another dear friend, Deborah.

Both Kacey and Deborah belong to this temple; it’s the one we’ll join if we ever join one. This was a big step in that direction, though I’m still far from a commitment to organized religion.

Toward the end of the service this morning, Annabelle leaned over, pointed to the rabbi and asked me, “Why does he keep talking when no one is listening?”

An hour is a long time for that many children to be in one room, even if they are constantly standing up and sitting down, as is traditional in a Jewish service. At that point, I wasn’t even facing forward anymore. I’d realized, too late, that Sophie needed constant monitoring.

Rosh Hashana marks the beginning of the “High Holidays,” 10 holy days culminating in Yom Kippur, the Day of Atonement. (That’s the big kahuna, the day you fast from sunset to sunset, and ask for forgiveness — like Catholic confession, only en masse and all in one day, once a year. Handy.)

“Today is the world’s birthday!” the rabbi said, by way of explaining that it’s the day we go back to the beginning to tell the story of creation. That got Sophie excited. She kept asking, “Whose birthday is it?” quite loudly.

But that wasn’t the problem.

Before we got to The Problem, we were having a nice time, with the girls enjoying the music, switching off on the adults’ laps.

Not Ray’s lap. After initially indicating he’d like to attend, Ray took a pass this morning — I think he was worried he’d have to wear a tie. In the end, I was a little relieved, since he’s really not down with the god thing. “I’m afraid if I walk into temple, I might catch fire,” he said. Which was pretty amusing, I had to admit.

I can see why he was uncomfortable. At least I was raised Jewish. Ray still doesn’t quite get the concept of the agnostic Jew, though he’s been married to one for almost 12 years.

There were plenty of other laps to go around, lots of singing, and the highlight — the blowing of the ram’s horn, the “shofar,” which I’ll botch by trying to explain but which basically is a call to worship/atone/donate money to the temple. (I’m kidding about that last one — sort of.)

For me, the best part of the service was the exchange Annabelle and I had when the rabbi read from the torah, telling the story (albeit an abbreviated, watered-down version) of Adam and Eve.

“Mommy, who wrote those stories?” Annabelle asked.

“Well, some people say god wrote the stories,” I told her. “But to be honest, I don’t really believe that. I think some really nice people wrote the stories as a way of teaching people to be good.”

She nodded energetically and settled into my lap. Not bad, I thought to myself.

A few minutes later, I realized that Sophie had been turned in her seat, engaged in conversation with a woman sitting in back of us with her family. (It was that chaotic and loud; I couldn’t hear.) At first, I thought Sophie was grilling the woman about just how the shofar works, but then I realized the conversation had taken a turn.

The woman’s son — he was 7 or 8, I think — clearly had a birth defect that affected his arm, which ended about where your and my elbows are. Too late, it dawned on me that Sophie had noticed and was asking the boy and his mom, again and again, “Why? What happened?”

The woman was patient and sweet (“He was born that way,” she shrugged, which didn’t satisfy Sophie) but by the time I realized what was up, the little boy was hiding behind her. “He’s embarrassed,” the woman told Sophie, still smiling but looking at me with big “can’t you get your kid to shut up” eyes.

I said the first thing that came to mind.

“Sophie, do you like it when people talk a lot about Down syndrome?”

She looked at me and shook her head.

“Well, this little boy doesn’t want you talking about him, either. It’s the same thing!”

I looked at the mom and added quickly, “I know it’s not the same thing.” She just smiled.

At this point the service had ended and everyone was scattering. The woman and her family hustled off. I looked at Deborah and shook my head, horrified.

I had worried that people would stare at Sophie this morning (and I suppose they did, a bit), but she wound up being the starer. Funny, Sophie’s genetically endowed with a kind heart and beyond that, I know she’s a sweet little girl.

But standing there, I realized that’s not the same thing as the Golden Rule — which, as far as I’m concerned, is the best purpose of religion.

Our friends came by the house afterward to eat my overbaked challah and dip apples in honey for a sweet New Year.

I had a lovely time, but couldn’t stop thinking about that boy. Later, Annabelle asked (out of the blue), “Mommy, why does Sophie have so many therapies? It seems like she’s not good at ANYTHING!”

I explained that many things are harder for Sophie, and she has people to help her learn. And thank goodness, I thought to myself, that we have such wonderfully trained and experienced experts to teach Sophie to talk, write, run and jump.

Still,  some things fall to the parents, no matter what, and I know that I’m Sophie’s Golden Rule therapist. I’m just not sure I’m adequately trained.

I have to admit that I’m more than a little proud that Annabelle’s already questioning the highest authority. Because I have no faith (of that variety) myself, I view religion simply as a tool by which you can get others to behave. Clearly, Annabelle doesn’t need that tool.

But maybe Sophie does. Sophie thrives on structure, rules, a plan. Will she need religion to stay on the straight and narrow? If I do introduce her to religion, will that be unfair, since she might completely “get” it?

Am I overreacting to some simple curiousity?

So much for a light-hearted New Year’s celebration.


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Party Hat

Dance Party On

posted Friday September 18th, 2009

danceparty

Some poop went down the past few days (and trust me, I didn’t bore you with most of it) so I wanted to end the week on a lighter note, with a picture from the dance party Sophie and I had a couple mornings ago.

I never thought I’d be the kind of person who’d say something quite this corny, but I really do feel sorry for anyone who doesn’t get to experience the extra-strength joy of a dance party in the kitchen with Sophie in her leopard-print PJs, “Seasons of Love” blasting from the under-the-counter CD player, Jack the puppy joining the fray.

There’s not much in the world you can’t drown out if you turn the music loudly enough and spin around.


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Party Hat

Smiley Face

posted Thursday September 17th, 2009

sophie spell

Last night, the girls and I sat at the dining room table to do homework. Annabelle had some fancy-schmancy assignment involving decorating her spelling words (some nights it’s drawing them in a shape of pyramid or making them blocks), so once Sophie finished reading her little book, I took her spelling words off the fridge, handed her a pen and paper, and told her to write them. Just once.

It took a while.

Sophie delighted in drawing each letter carefully, drawing big circles over every “i”.

“You know,” I told her, “sometimes it’s really fun to put a smiley face inside your i.”

Without missing a beat, the pen left the paper — headed for her eyeball.

Annabelle burst out laughing and sucked wind at the same time. I grabbed the pen and looked Sophie in the (luckily still-unmarked) eye and asked, “You didn’t really think that’s what I meant, did you?”

She just smiled.

Inside, I was sad. Of her many challenges, the greatest might be Sophie’s handwriting. We got through five words last night and that filled the page (I know I should have lined paper, though it wouldn’t have made much of a difference). She tries hard, but it’s tough. You can see it in the picture. We need to make some big decisions about how to proceed: Should Sophie learn to keyboard, which might be easier for her but would set her apart from the class? Should she be receiving more occupational therapy for writing? Are there other remedies? Or should I not be so concerned?

These questions need to be answered, and soon. That’s why I was so frustrated this week with the special education teacher. Sophie’s IEP requires that after the first month of school, a meeting of her entire team (teacher, therapists, special ed instructors) be held to assess how she’s doing. Writing will certainly be at the top of the list — if we ever do have that freaking meeting.

I know the beginning of the school year is a crazy time, so I held back from asking about the meeting. I wanted to see what would happen. By last week (five weeks into the year – and experience tells me it will take at least two weeks to schedule this meeting)  I was not pleased. So when the principal stopped me to ask my opinion about something unrelated, I mentioned that the meeting hadn’t been scheduled.

I had a call from the special ed teacher that afternoon. But when we finally did communicate a few days later, she suggested we ask each therapist to simply send a note home about Sophie’s progress.

The guilt bug bit, but not hard enough for me to agree. I wanted to say okay — it is a lot of work to gather everyone — but again, experience teaches me that the group needs to sit down in person so we can share news about

Sophie’s progress and problems, and brainstorm solutions.

A meeting’s in the works, I’m told. Meanwhile, October looms. I’m beginning to worry about second grade. And now I have a new concern — that my daughter will try to draw a smiley face on her eyeball, at my behest.

Good thing I didn’t tell her to make her “i” into a daisy.


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A School Day in the Life of Ms. (Sophie’s Last Name)

posted Wednesday September 16th, 2009

Miss Y emailed this afternoon:
I know you’ll appreciate this-today in math we were creating our own subtraction sentences and pictures to illustrate the math process. When Sophie came to share hers with me (8 elmos and 6 went away, 2 were still there), I noticed something new….at the top of the page, where I usually see Sophie, I saw “Ms. (SOPHIE’S LAST NAME)” written instead :)
 
 
In other news, I am using a jar with popsicle sticks that have the children’s names on them so that everyone gets a fair chance to have a turn writing on the board or etc.I pick a stick and then leave it out so that everyone has a turn throughout the day to come up to the board, participate in a game or play,etc.
 
During math tub time, I noticed Sophie had the jar in her cubby and when I asked her about it, she told me she needed it for her classroom at home when she plays school :). So, I let her know that we need to keep our jar here, but I have extra popsicle sticks if you would like me to send them home, just let me know. 
 
 
Have a great night!

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Party Hat

Retail Therapy

posted Tuesday September 15th, 2009

kewpie

It was inevitable, I suppose, that this week would come crashing down on my head even before Tuesday was over. We’re in the final throes of putting together the “Best of Phoenix” (ironically titled, if you ask me) and in many ways it’s the best and worst one we’ve done. Always a ton of work. Inevitably a lot of drama.

And it was just too good to be true, this past weekend, when I actually found myself forgetting names of co-workers and titles of work blogs. You might find yourself in The Zone after hiking a tall mountain. For me, it came after travesing an enormous flea market. The Rose Bowl Flea Market (held the second Sunday of the month in Pasadena, California) is billed as one of the largest in the country, and I believe it. I didn’t sit down from 7 a.m. to 4:30 p.m. and I can’t tell you how many piles of stuff I examined.

For me, that’s heaven. I call it “Other People’s Shit,” but really, it’s treasure, and the junkier the better. eBay and etsy have picked most collections clean, but there were still deals to be had — if a celluloid Cracker Jack charm shaped like an owl is something you crave. I also snagged an old Levi jacket, a piece of carnival chalk shaped like Sleepy (the dwarf), black poodle bookends, a gaudy pink and blue rhinestone pin, a book about Christmas in Mexico, several bags made from Thai rice bags, some tiny grasshoppers intricately shaped from chenille,  and a rickety flower-covered iron candle holder. Among other things.

There were some deals that got away, like the kewpie doll chalk figurine that someone had cleverly converted into a lamp and dressed in silk and dice beads. The woman was asking $90 and would have settled for $50, but I was hoping to spend closer to $10. And so the kewpie was not to be mine. I couldn’t stop thinking about her on the drive home.

That was Sunday night. I haven’t thought of her since. My treasures are still crammed in their bags, abandoned on the kitchen table. Pasadena is a distant memory.

Tonight I’ll likely nod off over the proofs of the Goods & Services section of “Best of,” but if I have a few minutes, I’ll rummage through my bags and look at my treasures and forget about work — and the email I sent the special ed teacher today.

More on that tomorrow.  For now, I’ve got a date with some chenille grasshoppers.


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Party Hat

re: a favor

posted Tuesday September 15th, 2009

The response to my email requesting that my colleague not use the word “retard” around me:

i believe you used the word yourself today. so the answer is no.

And my response (and the long explanation is that I did repeat the word back to him at the staff meeting yesterday):

it’s true, i was making fun of you at the staff meeting. i apologize. i thought making you’d get the nuance when i used the word myself, but realized later that you probably wouldn’t, which is why i asked directly. this has bothered me for a long time and other staff members have mentioned it. i was trying to be as professional about it as possible when i made the request. i’ve made it and i won’t say anything more, much as i’m tempted. it’s certainly your choice to express yourself as you wish.

P.S. Our boss, who was cc’ed on the email, also responded to say that the word is “common parlance” so he sees nothing wrong with using it.

It’s true, I work at a newspaper. Free speech rules the day and it should. Of course, Sophie complicates things. For me, anyway.


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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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