Party Hat

Leaning In to Junior High

posted Tuesday May 19th, 2015

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What a difference a year makes.

A year ago this week, I sat in the audience at Sophie’s elementary school “graduation” ceremony and sobbed, convinced that the Salad Days were over, that no school experience would ever be the same, that from now on my girl’s life would be a painful, downhill slog.

And in some ways, I was right. Junior high is big and scary and most mornings, Sophie pretty much refuses to get out of bed, out the door, out of the car. She hates the dress code. She doesn’t have many friends. I wonder how much of the curriculum flies right over her teeny, tiny head.

In other ways, I was so wrong. From the principal down — with very little exception — the staff could not have been more welcoming, open to mainstreaming a kid with Down syndrome when they never had before, and when they already have a host of inner city public education issues to address. This isn’t a school that receives a lot of tax credit money. I haven’t seen much evidence of a PTA, or acknowledgement of Teacher Appreciation Week. This is a staff that makes do with less and doesn’t complain. They take what they are handed, including a pretty tough group of kids, kids whose parents haven’t sought out charters or the district’s lily white, fancy alternative schools.

I’ll be honest: I sent Sophie to this school because I didn’t have a choice. And a year in, I’m so glad I didn’t. True, she never wants to get out of the car. But she’s glad when she does. Her beloved aide from third grade on waits in the courtyard, waving to me each morning. This school started a Best Buddies club when I asked, a drama club when Sophie begged. They welcomed her onto the cheer squad and after the first month, Sophie was fist bumping with the school resource officer and joking with the office staff. She’s a frequent flier at the nurse’s office, and is always welcome. I am uneasy with some academics (the social studies teacher’s reports have been pretty erratic), but I can say for sure that Sophie’s ending sixth grade with better math and Spanish skills than mine.

To be sure, friendships with peers are coming along more slowly. Sophie has yet to attend a junior high birthday party (is that even a thing?) and I hear she dances a lot at the school dances but I’m not sure that’s such a good thing for her social life since she’s apparently the only girl on the dance floor.

And yet last week I got a glimmer that everything is going to be okay. I skidded into the last choir concert of the year, late as usual. Sophie sang with enthusiasm, then sat with the rest of the sixth graders as the older kids performed. I was caught off guard at the end, when all the kids crowded onstage to sing one final song, “Lean on Me,” and I snuck around the back of the stage to get a glimpse of Sophie. As I rounded the corner, my eyes filled with tears. There she was — front and center, the smallest by a mile, singing her heart out — cuddled in the arms of a classmate. I didn’t know this girl who happily embraced my kid, including her so fully –for the moment, at least.

That moment is enough to keep me going all summer, to encourage Sophie to read a book start to finish, to invite some junior high girls over for play dates, to brace myself for August, when I’ll have to start waking her up early and pushing that dress code on her again.

This week, as I watch the reports of dreaded IEP meetings fill my Facebook feed and see parents express anger and frustration at being pushed out, I am sending silent encouragement to my fellow parents: First and foremost, push for what you think is right for your kid, but also listen to trusted advisors, like Sophie’s elementary school principal, who encouraged me to lean into this junior high.

And embrace those moments, when they come.

 


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Party Hat

In Defense of Teacher Appreciation Week

posted Wednesday May 6th, 2015

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The other day I was scrolling through Facebook and saw something that made the top of my head blow off.

It was a blog post entitled, Teacher Appreciation Week … Make It Staaaaahhhhhp!!

The author made it clear that she was not interested in dissenting opinions, so I kept quiet on her page. I like this woman. We have never met — as with many of my FB friends, we live in different states and have kids with Down syndrome in common. She is wise and funny and, to be honest, being friends with her on Facebook is like watching the Bravo channel in all the right ways. So I hope she doesn’t unfriend me after this.

But I’m willing to take the chance, because what she said really pissed me off.

I’m sure if this mom was here to defend herself she’d say she has nothing against teachers and everything against the tyrannical and annoying PTA systems that rule parents’ lives. I get that. Annabelle is almost 14 and I’ve never been to a PTA meeting, not once. Best decision I ever made. In fact, I kept my at-school involvement very limited from day one, keenly aware that I don’t typically play well with others.

I have always made an exception when it comes to Teacher Appreciation Week. It’s a simple concept that others like to complicate but the bottom line for me is that it’s a reminder to let our kids’ teachers — people who often spend more waking hours with our children than we do — know that we recognize their efforts. It’s also a chance to let our kids know that it’s important to say thank you.

And here let me say that while I’ve certainly been critical of some of my kids’ teachers and learning experiences over the years, there’s not a single teacher (well, okay, maybe one — and one principal) I am not eager to shower with gift cards and cookies. In many cases, a new car would not be enough. Charter, public, private, there’s so much debate and bad blood when it comes to education these days. But bottom line, what I see year after year is people willing to work insanely long hours for almost no pay to educate my not-always-easy-to-educate kids.

So no, I’m not going to pile on in a discussion about how shitty it is that the PTA is sending home Teacher Appreciation Week assignments. And if parents are competing to see who can be the nicest to the teacher,  I say good — let the coffee mugs and apples and spa gift certificates pile up on desks in schools across the nation.

The gifts don’t have to be expensive; flour, sugar, salt, eggs and butter for star-shaped sugar cookies cost me almost nothing but a couple late nights. None of this has to take the place of other forms of parental involvement (except, for me, PTA membership) and there’s no need to make a big deal out of it. It should be a no-brainer.

This year I didn’t receive word from either of the girls’ schools that the week was approaching (and that could well be my fault — the flyers might be lost in piles of fund raising appeals from the charter school and IEP notices from the other one) and frankly, for once I wouldn’t have minded an assignment. I Googled “when does teacher appreciation week start” last week and started preparing. I have two dozen people to thank at Sophie’s school alone, and at that I’m sure I’ll miss some. She was so excited that she insisted on writing the tags herself; I hope someone at school can help Sophie decipher her own handwriting when it comes time to hand out her gifts.

Just one more task for the educators.


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Party Hat

Cinderella Moment

posted Sunday April 26th, 2015

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Sophie took the stage one night last week in the junior high cafeteria. With a microphone in one hand and a large sparkly “slipper” (her nanny’s prom shoe) in the other, she performed a short monologue. She rushed and held the microphone too high, so I’m not sure anyone else could understand what she said, but I’d heard the piece so many times I got the jokes about being a bag lady ditched by her carriage, missing her tiara, waiting for her prince.

In any case, Sophie was charming — so proud of herself — that she got a big round of applause from friends, family, teachers and even her elementary school principal who stopped by to see her. Satisfied, she came down from the stage to sit with us for the rest of the performance.

A happy ending to my tale of trying to find a meaningful drama experience for Sophie at school, right? Well, no. Not really. Not at all.

Let me take you behind the scenes. Considering the amount of time she had to prepare and the instruction she got, Sophie deserves a Tony for last week’s performance.

First I must pause to heap well-deserved praise on the staff, teachers and administrators at Sophie’s junior high. As we near the end of her first year there, I am truly in awe of how accepting and accommodating they have been — opening arms, classrooms and the junior varsity cheer squad to my little girl. She still hasn’t made any really close friends, but she loves being a part of the Best Buddies club (it warmed my heart to see her best buddy in the audience last week) and word has it that she danced with at least six boys at the school dance Friday.

She still hates the dress code, and complains about going to school like any tween would, but I know there’s a lot she loves.

An after-school drama club was the cherry on the sundae — the result, in part, of my griping that there is no drama elective at Sophie’s school. The gifted academy on campus does offer one, but I was told in no uncertain terms that kids from the general population cannot sign up, even though the gifted kids are invited to take gen ed electives.

Sophie was thrilled to join the drama club, thrilled when she learned a couple weeks in that she had been cast in a scene with another girl. And then nothing happened. Trying to hold back (not my strong suit) I didn’t say anything. Sophie went to drama club each week, accompanied by her nanny, who reported that while most of the kids practiced a play, several others sat waiting for something to do. Including Sophie.

With a little more than a week to go before the scheduled performance, I finally emailed the teacher who had kindly volunteered to lead the drama club. She wrote back that Sophie had lost her first script, admitting that that acutally wound up not mattering because the other actor in her scene was pulled to take the place of someone who had dropped out of the main play, leaving Sophie with nothing to do. She could send a monologue for Sophie to perform the next week, the teacher said kindly, or Sophie could make posters and be an usher.

After some consideration, we took the monologue — a 33 line script that would have been hard for any kid (or adult) to memorize in a few days. I don’t know much about drama but my friend Kim taught me long ago that monologues are the toughest thing to memorize. I edited the monologue down to about 10 lines, got the teacher to sign off on it, and we (the nanny, Sophie’s aide and family members) helped her memorize it. My mother provided a costume (it’s nice to have a dance studio in the family) and the shoe was the final touch.

Sophie finally rehearsed in front of the teacher leading drama club the day before the performance.

Don’t get me wrong. I’m thrilled that there is a Drama Club, delighted that Sophie was allowed to join. And I get that it was the first time the school had tried it and that there are always going to be growing pains. I’m sure Sophie will want to join again if the club keeps going, and hopefully she’ll get a role next time — or at least be included in some meaningful way.

But I have to be honest: for as grateful as I am, the whole thing left a bad taste in my mouth. I don’t like that this time, at least, it was all for show. I winced when the drama club leader got on stage last week to praise the kids for working so hard for four months.

I can’t stop thinking about that drama elective at the gifted academy. Here’s the thing. Sophie is learning some relatively complicated math in school, which is good for brain development, but it’s unlikely she’ll use it in real life. The fall of Rome, which she’s studying in social studies, may or may not come up in casual conversation. If I had to guess now, I’d say that Sophie’s destined to do something in life that’s related to the stage. Yes, as has been suggested, I can sign her up for all kinds of after school classes and camps (her schedule is currently packed with them).

But still, I wonder what she’d get out of actually taking a serious drama class at school — one where she receives instruction and coaching, one where she takes part in the group activities. And what would the rest of the class get out of that?

Sophie will never come close to qualifying for the gifted academy. The thought is laughable. But I’m serious when I say that for as much as I find myself doubting her abilities and potential at time, I can’t help but believe that Sophie’s more than qualified for a junior high drama class, no matter where it’s offered.

And so next week I’ll be off to talk with administrators, to see if we can capture more than a Cinderella moment.

 


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Party Hat

I Wanna See You Be Brave

posted Saturday April 18th, 2015

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So when did “brave” become a four-letter word?

I think I know. Like so many — too many — things, it’s got something to do with Facebook. You know, that place we all hang around and share what we hope are meaningful snippets of our lives. And articles about things like crocheted men’s underwear, the image of which has unfortunately been seared into my brain for the last day.

Here’s the drill. A Facebook friend posts something about his or her life – her son had an epileptic seizure, his wife died several months ago — and, inevitably, some sort of quip or comment about how they handle it. My friend Karen Bayless Feldman was a funny person before her son got sick, and even funnier now, as she explains how her family addresses Brennan’s epilepsy. Tim McGuire is unbelievably eloquent in his descriptions of how he battles grief.

Our reaction, inevitably, is to say, “You are so brave!”

Is that such a bad thing? Maybe. The other day I had lunch with my dear friend and longtime colleague Robrt Pela, who takes impossibly good care of his mother, who has Alzheimer’s. He lamented that when he posts an image of his mom and a rather dark comment (you have to know Robrt) that people responded about how he’s so brave, such an inspiration.

No I’m not! he practically shouted across the table at Pane Bianco. I replied that I’d seen some of the posts, and the comments and that I had chosen to not comment at all. I didn’t tell him that’s because I have no idea what to say. When your friend spends years of his life caring for his mom (I’ll leave out the details, those are Robrt’s to share) I don’t see how you can respond with any comment other than, “You are an inspiration! You are so fucking brave!”

And yet I knew he didn’t want to hear that.

Then there’s Jennifer Longdon. She has a spinal cord injury and uses a wheelchair. I met her on Facebook, then wrote a piece for New Times about how she interacts in social media — offering valuable insight, advocacy, and, simply, the gift of letting people know what it’s like to live day to day with her injury.

Jennifer is probably the bravest person I’ve ever met. When she reads that, she’ll want to throttle me. The other day she posted a piece written by a woman who is disabled, who listed the reasons we shouldn’t call disabled people inspirational and commented:

This! All of this!! Seriously, please read, internalize and share widely.

“Our daily lives are not yours to cherry pick for teachable moments or perspective on whatever you don’t like about your life.”
“Don’t pity us as a source of self-motivation. If you want to motivate yourself, buy a cat poster.”

Well, I hate cats, Jen, and I love you. I do get that it’s not appropriate to slobber all over your Facebook wall and write “You are SO brave! You got this, girlfriend!” when you’re off to the ER for the umpteenth time. But I’ll tell you the truth: You can’t help but be an inspiration. And I think you know it. And yeah, it sucks that it’s another burden for you. But it’s also a giant gift you give the world.

That said, you should still read the piece Jennifer posted. And consider Robrt’s situation.

Once in a while, someone tells me that I’m brave for raising a daughter with special needs. I usually burst out laughing, because chances are good that I’ve just screamed at my kid or ignored her homework or let her be late for school or leave the house without brushing her hair (or all four in one morning!) and really, for me, it’s not about being brave, it’s just life. And that, I’m pretty sure, is how my friends feel. If your wife died, you’d find a way to go on. If your son began having seizures, you’d use humor to cope. If your mom got sick, you’d change her diapers for years.

Right? I guess so. (Except the diaper part, Mom — don’t worry.) But I haven’t been in those situations, so I honestly don’t know. For me they are insurmountable, requiring great bravery. And that, I know, is what people are telling me when they say I’m brave to be Sophie’s mom. They do not mean to be insulting. They are probably at a loss for words, and wondering how the hell they’d deal with it if it happened to them. Or maybe, just maybe, they truly do find greater meaning in it. And is that such a bad thing?

People bad mouth Facebook, and I get it. But I also love it. It’s pulled down our walls, and certainly it gives us the chance to be fake — but I see a lot of reality, too. And I’m grateful for it. Even inspired.

(And now I’m hiding under the table as the rotten tomatoes fly.)

 


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Party Hat

sophieabbie

Last week, Jewish people all over the world cleaned out pantries and changed dishes — getting rid of all signs of leavened foods — in pious (and arduous) preparation for Passover, the celebration of the Jews’ exodus from Egypt.

I was busy getting ready, too, trying to figure out how to wrap bacon around matzoh balls and making a playlist in keeping with the theme for my seder this year, “Passover the Musical.”

In the end, the bacon strips were too short, the matzoh balls too big and I couldn’t find the toothpicks. But the mix turned out great — I crowdsourced on Facebook, gathering Passover-inspired suggestions like “Take Me to the River” by Al Green (I went with the Talking Heads version), Lesley Gore’s “You Don’t Own Me,” and “You’ve Gotta Fight for Your Right to Party” by the Beastie Boys. Perfect music for mingling over deviled eggs and seating arrangements, as we managed to cram 33 people, two large dogs and a cat into my tiny backyard on a perfect spring evening.

Sacrilege? Yeah, most of it. But it’s also how I get my family — and certain friends — to participate in Passover without complaint. Previous themes have included “Passover on a Stick” and “Pastel Passover,” but this one was my favorite.

There was bacon and beer but there was also brisket and wine and two kinds of charoset. We said (most of) the prayers and the youngest kid read The Four Questions. We also read passages by David Brooks, Ruth Bader Ginsburg, and a favorite student in the writing workshop I’ve taught forever with my dear friend Deborah, who led the seder.

Then there was the music. Anyone brave enough was invited to perform. Ray played Metallica’s “Creeping Death” on the guitar, and even passed out copies of the lyrics so we could all follow along. Deborah’s daughter Anna performed a beautiful song by Debbie Friedman. Annabelle gave Adam Sandler a run for it with an original song she wrote and performed on the ukelele (“P-A-S-S-O-V-E-R — Today is Passover, so shout hurrah”). Then Sophie and Abbie sang.

Sophie had been wandering around all night with her school choir notebook, so I wasn’t surprised when she opened it, but I was shocked when Abbie opened her mouth. Abbie is almost 20, the daughter of one of my oldest and best friends, Trish, and while she’s all grown up and absolutely lovely, I think of Abbie as quite shy — as my flower girl 17 years ago, she all but refused to walk down the aisle. These days she’s quiet and confident, not an attention seeker. But Abbie loves Sophie, and Sophie wanted her to sing, so the two of them offered a beautiful rendition of Fleetwood Mac’s “Landslide.”

And there, under the full moon, after half a glass of wine, I had a religious moment — or as close as I get.

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

That’s my kind of prayer. Stevie Nicks is back and forth in interviews over whether she wrote it for her father, but hearing our kids sing it, I knew the song was meant for the parents in the crowd. Earlier in the night, Trish teared up when she saw that Sophie’s now wearing braces. “She looks so grown up!” she said, wiping her eyes. I felt my own well up as Sophie perched on Abbie’s lap and our “little” girls sang, Abbie’s voice clear and beautiful, Sophie’s unmistakably her own.

So what does “Landslide” have to do with Passover? Well, nothing, really. And everything. What is religion if not an attempt to handle the seasons of our lives? Whether it’s heavy-duty prayer in synagogue or some silly twists on tradition in my own backyard, for me it’s about figuring out what our place is in this crazy universe, how we fit in and how we can work to make it a better place. We do that by building our own communities, our congregations, the people who enrich us, educate us, make us better, catch us when we fall. People like Deborah and Trish, Anna and Abbie.

Passover was a big success (if I say so myself), even if we should have had place cards and next year I promise there will be (a lot) more beer. Now I have to figure out what to do about the B’nai Mitzvah, the joint Bat Mitzvah for the girls next year that’s still in its earliest planning stages, mostly because I’ve been stuck trying to figure out the most basic logistics. My Passover seder had all the elements I’m looking for in a celebration of my daughters’ coming of age — some religious education (Annabelle actually did quite a bit of research for her song), good food, good music, some twists on tradition, celebration of heritage, and important people from our lives. (Hopefully we’ll have more seating at the B’nai Mitzvah.)

I know I want the girls to study hard for their B’nai Mitzvah, but just where should that studying take place? I haven’t gone to synagogue regularly since my own Bat Mitzvah, and looking back, the time I spent in temple and religious school was among the emptiest of my life, time spent staring at the clock and wondering why I was bothering, since I’d decided at 7 that I didn’t believe in any of it. I’m jealous of those who do find meaning within the walls of a synagogue, community within a congregation. It’s been tougher to find it outside. But I have found those things in my own way — and I need to remember to hold them close.

I bought myself a knock-off Jadeite cake plate for Easter. And my Passover gift to myself is a promise that I’ll quit feeling guilty about not joining a temple, about not taking the girls to services and religious school. We’ll figure out this B’nai Mitzvah thing on our own terms, terms that make sense to our family, that educate the girls about their heritage and help prepare them to be young women.

As for the particulars, I like said, those have yet to be figured out. But I do hope Abbie will sing “Landslide.”


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mcguire

Sophie got braces on her teeth last week. Knowing I had a solid hour with no (or few) interruptions, I settled onto a bench behind the line of dental chairs in the fancy orthodontist’s office, put my phone on silent, and lost myself in a book about a different set of braces — the ones on little Timmy McGuire’s feet.

“Some People Even Take Them Home”: A Disabled Dad, A Down Syndrome Son And Our Journey To Acceptance, published last year by Arizona State University journalism professor Tim McGuire, is a brutally honest, take-no-prisoners look at what it’s like to bring a child with disabilities into the world when you already know first-hand just how shitty things can get when you’re labeled “different.”

That’s one of the nicer things the bullies called McGuire. He was born with Arthrogryposis, which, as he explains in the book, translates from the Greek as “curved or hooked joints.” It is a muscle disorder. It’s no fun — McGuire goes into great detail in the book about both the physical and emotional toll brought on by two club feet, a bum hand and a “butt that sticks out.” It’s also very different from the diagnosis McGuire’s first-born son Jason received: Down syndrome.

Think too much about what it means when a scary-smart dad with serious physical challenges brings a cognitively disabled child into the world and it’ll start to drive you a little mad. I know. I’ve been thinking about Tim and Jason since I met Tim several years ago at a Starbucks near ASU’s Cronkite school, where he holds the title of Frank Russell Chair for the Business of Journalism.

For someone with such a fancy job description (it’s not his first — McGuire retired from the Minneapolis Star-Tribune as senior vice president) this man is wonderfully down to earth. I liked him immediately, and ditto for his book, which I barely put down all weekend. In it, he mentions our first meeting, and the desire to help people like me — with young kids with Down syndrome — understand what the rest of the journey might be like. Jason is now in his mid-30s, living in a group home in Minnesota near his older sister, who is a special education teacher. As I read the book (the title is a reference to a comment made by a doctor about infant Jason) I found myself dog-earing pages where I found similarities between Jason and Sophie — quips belying a wisdom beyond their assigned IQs; a desire to hang out with “typical” people rather than others with cognitive disabilities; and stubbornness hard to imagine until you’ve witnessed it. By the end, I realized I’d folded dozens of page corners.

McGuire and I have a lot in common, too — both high school debaters (I should have predicted that one!) and journalists. (It’s pretty clear he’s worked long and hard as an editor, evident in his acutely, sometimes painfully self-aware and analytical descriptions of both his and Jason’s childhoods.)

But there’s a giant difference between us, in that Tim McGuire is a total, 100 percent bad-ass. Through words and deeds, this man proves again and again that he’s just about fearless, and when he isn’t, he goes for it anyway. I am in awe.

He’s also amazingly candid, which I found refreshing in a memoir about special needs, a genre that often gushes about “angel babies” and calls Down syndrome “the Cadillac of birth defects.”

I must admit that I was a little surprised to see McGuire use the term “Down syndrome son” both in the subhead and throughout the book. These days, it’s far more acceptable to put the diagnosis after the person — to say “son with Down syndrome.” I didn’t ask Tim McGuire about that decision, but I’m guessing he’d say two things if I did: First, that as Jason was growing up, that was the common reference (a big step up from “Mongoloid” or “retarded”); and that second, if that’s your biggest problem — that someone calls your kid a “Down syndrome girl” — then lucky, lucky you.

I hope to someday meet Jason and his siblings (he has a younger brother in addition to his older sister) but more than that, I really regret that I never met Jean, their mom and the love of Tim’s life, who passed away last year.  I have a lot of questions for her.

To read more of Tim McGuire’s work (along with the book), you can go to his journalism blog, McGuire on Media or his personal one, McGuire on Life, Disability and Grief.

 


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Why I Sort of Hate World Down Syndrome Day

posted Saturday March 21st, 2015

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Today is World Down Syndrome Day.

All week long, my Facebook feed has been filled with posts by devoted, prepared parents going to their kids’ schools to educate others about DS. They are bringing blue and yellow (the official Down syndrome colors, I’m not sure why) iced cookies, wearing blue and yellow tutus, printing tee shirts, hanging giant banners in their communities and otherwise doing an amazing job of educating others about the most common genetic disorder, Trisomy 21, in which a baby is born with a third 21st chromosome. (Today is March 21 — get it? 3/21.)

It’s a lot of pressure. One day, the entire world. Too much.

Or is it that it’s not enough? Everyone and everything has an official “day” these days (when I signed on to Facebook this morning a friend had declared it “International Eat Ice Cream for Breakfast Day” and for a minute, she got me). I know it’s important (things like Down syndrome, not things like ice cream, though the people who market the stuff would tell you it’s very important) but all these days have put me in a daze. I’m kind of done.

But I’m not done with Down syndrome.

In our house, every day is World Down Syndrome Day — whether we like it our not. (And don’t worry, we love it almost all the time.) One thing I’ve learned in Sophie’s almost 12 years is that when you have a kid with Down syndrome, the process of educating others (and yourself) is constant — as it is with any kid, but particularly with one who comes with a set of sometimes unusual behaviors and characteristics.

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And sometimes, the best education comes when Down syndrome isn’t even mentioned at all. We spent several days during Spring Break in New Orleans, and I saw just about everything in the French Quarter — except for another person with Down syndrome. You might consider that a good thing given the debauchery of the place (and we saw some of that, too) but it made me sad. Hundreds, thousands of people enjoying wedding parades, brass bands, beignets. Where are the people with DS? It’s a question I’ve asked before when we’ve traveled with Sophie. (Disneyland is the grand exception.)

I don’t think I heard any of us or anyone else utter the words “Down syndrome” the whole weekend, but Sophie offered her own lessons by engaging with shopkeepers and servers, other tourists, the startled clerk at the front desk of our hotel. Unable to contain herself, she stepped out in front of a band playing in Jackson Square and rocked her best dance moves, earning cheers and a $20 tip from another dancer. All night long, all over the French Quarter, people stopped us to ask, “Is she yours?” And to say, “She’s amazing.”

“She is,” I wanted to say. “And you know she has Down syndrome, right? You know what that means?” Instead, I just smiled and said thanks.

It’s a 365-day-a-year education process, whether you have ALS, use a wheelchair, or have DS. That’s something I want to acknowledge today, for all of us, not just those who have a kid with Down syndrome. As a wise friend once said to me, “We all have something.”

That said, I have to admit that I’m a little jealous of all the blue and yellow today. I do love a reason to celebrate. As luck would have it, Sophie’s friend Tatum (who also happens to have DS) is spending the night tonight. I might have to make a cake.


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Pinch Me

posted Tuesday March 17th, 2015

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“Hey Mom come here, I need help with the green eyeshadow,” Sophie called from the bathroom.

“Um, okay,” I said, taking in the situation, the big, blurry smears. “You want me to get it off your cheeks?”

“No! I want you to put it on my eyebrows and all over my eyes,” she said, pointing to the Claire’s multi-pack. “Use the darkest green.”

I picked up the applicator and covered it in green eyeshadow, carefully painting her eyebrows and then her lids.

“How does that look?” I asked, pointing her toward the mirror.

“Good!” she said, exhaling loudly. “Now I won’t get pinched.”

It’s a challenge, figuring out how to dress for St. Patrick’s Day when your school dress code is limited to blue, white, yellow and purple. The eyeshadow accompanied rainbow striped socks, green beads and several green shamrock stickers. I’m sure none of it’s acceptable. And rule breaking aside, I’m not sure if I’m the best or the worst mom for letting my kid out of the house looking like such a wreck — sure to be the source of whispers and pointing, if not pinches, today.

But today, I didn’t care. Maybe it’s because we just returned from New Orleans, where you’re practically required to dress like a freak. Maybe it’s because I remember getting pinched on St. Patrick’s Day. Maybe I’m just tired, and sick of that stupid dress code.

Or maybe it’s because more and more, Sophie is my guide – I’m realizing that her choices aren’t always such bad ones.

Really, who cares if she goes to school with green eye shadow smeared on her cheeks like war paint? It’s all too appropriate, if you ask me. Sophie’s fighting all kinds of battles all day long, battles I don’t see, battles I probably don’t want to know about. Some days she doesn’t want to go to school at all. Today she was kind of excited to show off her outfit.

In the crush to get out the door this morning, I almost forgot to fill out a field trip permission slip that had been floating around in Sophie’s backpack for a while. I smoothed it out and grabbed a pen — signing, adding phone numbers, checking no to “Food, Plant, Insect Sting Allergies,” scribbling “Down syndrome” when the health form asked for “Chronic Health Problems,”and pausing only when it asked for “Recommended Treatment.”

“Green eyeshadow,” I thought. Instead I left that part blank, shoved the slip back into her backpack, and hustled Sophie out the door to school.

 


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Party Hat

End the R Word — And the Attitude

posted Wednesday March 4th, 2015

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I don’t hear it so much anymore, so I was surprised.

“I’m so retarded!” a brand-new employee said the other day, struggling to open a door with a new key card. We were coming back from lunch, and as we walked to the security office to get the key card, I’d winced a little, thinking about how colorful my own language had been over tacos and iced tea. This girl had barely said crap. (Literally — that’s the only off-color thing I’d heard.)

But she had no problem ripping loose with the R word. Usually that’s when I whip out my phone to show off pictures of Sophie. It was the girl’s first day; I let it go, sighing as I returned to my desk.

People aren’t using the R word so much anymore — not around me, anyway. And that’s good. But it’s not enough. Not using that word is only a start. The other night, a dear old friend made a reference to “special needs” — and not in a good way. I didn’t say anything. I didn’t have to — I heard her voice catch on the other end of the phone and winced myself, upset that she was uncomfortable.

We all do it, all the time. I do it, despite attempts to be aware. As a journalist I’m not super down with the word police. But I worry about what our words say about our thoughts and intentions, corny as that sounds.

Not so long ago, a guy I know was doing PR for the local Special Olympics chapter — until he tweeted a joke about special ed. The response was swift and firm — Jason Rose no longer has the bragging rights of working on behalf of the kids with special needs that he dissed.

In a perfect world, we’d all be so swift to respond. And we’d all have as much clout.

Before I had Sophie, the R word was one-dimensional, a meaningless put down. Down syndrome, special needs, special ed — all terms on paper. Sophie brings it all to life for me, and I figure  my — our — small contribution is bringing it all to life for others, too. Hence the Facebook status updates, the Instagram photos, the blog posts, the radio commentaries, and the occasional newspaper story, when I can convince my boss.

In-person introductions work pretty well, too. I think I’ll bring Sophie to the office next week during Spring Break.


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Party Hat

Hall Full

posted Friday February 20th, 2015

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In the end, I didn’t bake a pie. And the IEP still went well.

As well as could be expected, I suppose. Maybe better. Okay, definitely better.

Funny how I spent so much time looking for a fancy charter or specialty school for Sophie. There are things she doesn’t like about this traditional junior high, to be sure (top of the list, dress code, and also the fact that almost all her friends chose other schools) but there’s a lot to love — the staff (except for one teacher I’m a little unsure about) obviously adore her, she was allowed to join the cheer team, the school started not one but two clubs at Sophie’s behest (Best Buddies and drama), and Sophie just finished reading “A Wrinkle in Time” along with her general ed English class. General ed. She’s got an amazing aide. And while she still doesn’t have many friends her own age, I’m promised she’s getting there. She does have a friend in the school resource officer (read: school cop) and the two of them have a fist-bump-blow-it-up ritual whenever they see each other.

Still, I was anxious about the IEP, the “individualized education program,” a legal document required by the feds, full of goals and orders. At Sophie’s elementary school, we’d always had a pre-IEP meeting to make sure there were no issues, then another meeting to finalize goals. So when I got a call from the junior high to schedule the IEP (no mention of a pre-meeting) I got nervous. More so when the proposed time was 7:15 am. (School starts at 7:45, meaning the meeting would go no longer than a half hour.)

Sophie’s lawyer put the kibosh on that. In the end, the meeting went a little over two hours. I left feeling guilty for keeping teachers so long after school, but I also left feeling like we’d really accomplished something.

t don’t have a lot of advice to dispense in this area, but let me tell you this: If you are not a parent who doesn’t happen to have a background in special education (and even if you do) you might want to consider hiring an advocate to come to IEP meetings. Doesn’t have to be a lawyer, although Sophie’s advocate happens to be one. If you are in metro Phoenix, I’ll give you Sophie’s advocate’s name. She’s absolutely amazing.

I reviewed the draft IEP document and had nothing to say, other than that I wished I hadn’t looked at the page with the standardized test scores (first percentile is hard to put out of your head, mine anyway). Sophie’s advocate looked and sent me a long email, full of tweaks, comments and recommendations that she shared with the dozen team members who joined us in a circle in the resource teacher’s classroom yesterday.

It was nothing huge — Sophie will keep her personal aide, she’ll still get speech and occupational therapies, and she’ll get to stay in general ed language arts. But now she’ll get to do math with a calculator; she’ll take photos of her assignments on the iPad instead of struggling to write homework down; she’ll work toward writing a two paragraph research paper with citations. And she’ll get therapy designed to help her finally learn how to button and zip a pair of jeans.

“I’m not worried about middle school,” the lawyer told the group. “I’m thinking about high school. And college.”

I looked down, afraid to catch any eyes around the table. I don’t know what the others thought of that. Afterward, the lawyer told me she has no intention of Sophie being in a self-contained classroom in high school, adding that she can see her getting a two year degree at a community college. I could tell she meant it. That alone was worth her fee, times about a zillion. Having Sophie’s teachers hear it doesn’t hurt, either.

Last week, we snuck the girls out of school for an extra day and took them to Disneyland for the holiday weekend. It had been three years since Sophie’s last visit, and I was struck by how much she’s grown up. Seeing a kid every day in her usual setting, you don’t notice change. But I saw quite a bit at the park. As soon as we arrived, Ray and Annabelle rushed off to Space Mountain; Sophie wasn’t ready for that one (hey, me either) but she insisted on the teacups — a big step up from the carousel, her old stand by. To be sure, Sophie’s not your average tween — she wanted to see every character she could, telling each one, “I’m going to take a selfie because I’m too old for autographs, I’m almost a teenager.”

Yes, there were plenty of older kids (and adults) lined up for Mickey and Goofy, but we stood with a bunch of toddlers waiting to see Olaf, the snowman from the movie Frozen. We were next in line when a handler announced that Olaf had to take a break. I rolled my eyes. Sophie just grinned and kept waiting. Later, recounting the experience, she remembered that the handler had told her that Olaf had to go outside to pack some more snow on.

I looked down at my almost 12-year-old and blurted out, “Sophie, do you think Olaf is real?”

“No…..” she said slowly, looking confused. I backtracked immediately.

“Oh, of course he is!” I said. She smiled and nodded.

Some things haven’t changed. I’ll be honest: It’s a strange life. And a good one. Definitely a good one.

Most school mornings, Sophie struggles to get her backpack out of the car, put on her ID, and straighten her glasses before finally closing the door, offering a few final “I love you Mom!’s” as I pull away. In those few extra moments, I watch her classmates, big, almost-full-grown kids with facial hair and breasts, bounding by. Next to them, walking as fast as her tiny feet will let her, head down, hair mussed, boobs still not growing (don’t tell her I said that) Sophie looks like a second grader, maybe.

I hold my breath until I see her aide in the courtyard, waving.


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Amy Silverman
Amy Silverman has two beautiful daughters, Annabelle and Sophie. Sophie has Down syndrome. These days, Amy divides the world into two groups: the people who adore Sophie, and those who don’t look twice. Amy has to remind herself that once upon a time -- when it came to people who are "different" -- she fell in the latter category. And therein lies the blog... Read more
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