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The other day I was excavating Sophie’s bedroom (if you have a teenager, you know what I mean) and happened upon a middle school relic, a Best Buddies application.

Sophie has Down syndrome. She’s the target audience for Best Buddies, a kid who should be matched with a typical (or choose your favorite term for such) kid, right?

Not according to Sophie. It’s hard to read but look closely at the crumpled application and you’ll see that Sophie was applying to be a peer.

Awkward.

When she started middle school, I begged the staff to start a Best Buddies program. They did — one of the few junior high-level clubs in the state. The local administration for the national organization left something to be desired (more than once, the year’s biggest local Best Buddies event was scheduled on the same day as the local winter Special Olympics events, leaving kids with very few options to begin with a Sophie’s Choice. One year we tried to do both and it was a disaster) but I know everyone was trying.

Except Sophie. She was not interested in the Best Buddies model, not as it was intended for her. Like I said, awkward. I cringe at the thought of her turning it down, but I get it, too. Sophie takes math and English alongside her typical peers, but when it comes to extra curriculars, there’s only one club where she’s truly welcome.

It’s been the same in high school. Sophie attended a meeting of a Best Buddies-style club, in which kids from the self-contained special education program at her school are matched up with typical peers. Again, she decided it wasn’t for her.

She also decided last week, after the first miserable day of tryouts, that cheerleading isn’t for her, either.

So what’s in between? In between is Sophie herself, working on a daily basis to worm her way in at the school she loves so much. On the outside is ballet class, a theater troupe, and unified Special Olympics cheerleading. Sophie keeps busy, outside of school. Inside of school, not so much.

Best Buddies is great. But it’s not everywhere and it’s not enough.

 


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Sharon Cowan Landay is the amazing mother of Sophia. I met Sharon when she took Mothers Who Write, the workshop I co-teach, and we stayed friends on Facebook. I saw her post last week, looking for someone to accompany Sophia to her senior breakfast, and I asked Sharon to write a guest post about the experience. She did that and more, and I’m so grateful. 

Thirty three days – this is the number of school days left in Sophia’s senior year.

The completion of four years of high school in Arizona means Sophia will have attended approximately 720 days of school. Sophia is what society calls Special Needs. Foolishly, I thought that this descriptor would not exclude Sophia from a typical high school experience. Four years ago, as we were completing an IEP for Sophia’s freshman year, I had the dream, though now it seems it was a delusion, that students in the “mainstream” would embrace Sophia, invite her to activities, engage her, find her amazingness, value her for who she is – all the things the media portrays when you see stories of the student with special needs who was voted Homecoming Queen/King.

Yah, that didn’t happen. Not even close.

Sophia is my daughter. She is also so much more. Sophia was born at 40 weeks, approximately 7 pounds, and had an Apgar score of 0. She has endured, recovered from, and thrived following 7, maybe 8, surgeries. At 17, Sophia is all of 75 pounds, 4 foot 11 inches. In her 17 years, Sophia has received many diagnoses. The first, given when she was just 28 days old, is ACC – Agenesis of the Corpus Callosum (www.nodcc.org). These Latin words mean that the fibers that connect the left and right hemispheres in the brain did not develop. This, as best we know, is Sophia’s “umbrella” diagnosis. All diagnoses that have come after are likely related to this midline anomaly.

Though Sophia developed slower than books tell you an infant/toddler should, she did develop. She walked at 2. Her verbal skills exploded around 2 ½. Sophia walks, runs, climbs, rides a 3 wheel recumbent bike, and stares at screens with the best of ‘em. Sophia rides horses once a week. She colors on the driveway with chalk. Like most every student, Sophia has slung a backpack over her shoulders for 12 years. She writes and tells great stories, often pirated from a show she has watched or a book she has read. Her grammar is atrocious, so grant-writing is out as a career. Sophia has a basic command of elementary math — addition, subtraction, multiplication, as well as knowing how to figure perimeter of a polygon and what a noun is. She has very little concept of the passage of time: five minutes could be two hours, and an hour could be three minutes, so she won’t hold the stop-watch at track events.

She loves animals. All animals. Her goal and dream is to work with animals. She will pet anything, loves pictures of everything, and has no fear of any animal (or insect. Eww.)

In the past four years, Sophia attended 0 school (sports) games, 0 school dances, 0 after school activities.

Sophia would, usually once or twice a year, tell me about a school activity that she wanted to attend. A football game; Homecoming; Prom; Coffee House. Activities that many kids attended, with friends, assuming this as their right as a high school student. Sophia did attend Coffee House one year, with a Respite provider (who graduated from the same school 4 or 5 years earlier). Not a friend, rather someone paid to hang out with her. (I would say babysit, but she’s in high school and it doesn’t sound right.)

In the past four years, Sophia has attended approximately six “mainstream” classes. The rest of her classes were modified, attended exclusively by students receiving Special Education services.

In these same four years, the number of “gen ed” students that called/texted Sophia – 0.

Number of students that invited Sophia to an after school activity – 0.

Number of students who called Sophia a bitch (because they lack the social skills to have healthy friendships) – at least 3.

Number of classes in which Sophia learned something new – maybe 2.

Number of hours spent “working” in the cafeteria, under the guise of “job training” — at least 180, quite likely more.

No one should walk away from high school with 0 friends.

This spring, Sophia heard that there would be a Senior Breakfast.

While the other seniors learned of this sometime in March, Sophia just got wind of it the week of. Yes, last Monday she came home telling me about the Senior Breakfast that would be Friday morning, stating she wanted to attend. On Tuesday she brought home the requisite permission slip. Even the permission slip assumes typicality – students would transport themselves. (Every senior drives?)

I didn’t give Sophia an answer immediately. I thought about it. I decided I would publicize our vulnerability (to my Facebook network), asking if any other seniors might be willing to be Sophia’s “friend” for the morning, so that she would have someone to sit with.

Radio Silence.

I do get it. They are seniors too. This is their Senior Breakfast. This is one of their final hurrahs.

But what about Sophia?

With a lot of nervousness, I took the signed permission slip and fee to the high school and purchased Sophia’s entry to the Senior Breakfast. Friday morning Sophia woke up, excited for the breakfast. I drove her to the location, walked her part way in, and watched her walk the remaining distance behind two unknown classmates.

Sophia sent me a text picture of her breakfast. She told me she was sitting with Brooklyn. Brooklyn is a junior. She was at the breakfast as a student government representative. She found Sophia and joined her. Sophia did not sit with any seniors. Sophia might have said hello to a few, and vice versa, but she was left alone.

The saving grace, in a twisted way, is that Sophia didn’t seem to notice or care.

I noticed and I care. I will always notice and always care.

Sophia went, she was happy, and that has to matter.

I hold no bad feelings toward any student or parent. The school failed Sophia. The district failed the school, that failed Sophia. For four years, students could have been part of Sophia’s high school experience. Instead, she spent four years in relative isolation. Didn’t anyone think to encourage friendships among different kids? Didn’t anyone remember there was a group of students, off in a proverbial corner, who might want friends? She seems to be a forgotten student.

Even worse, there are so many just like her in their isolation.

Sophia will complete high school soon. Sophia will complete high school with, it seems, no genuine friends. No one to celebrate with. No one to realize she, too, completed four years. 720 days of missed opportunity. I’m sad for Sophia, but I’m also sad for the kids who did not get to know her. Sophia’s love for Fairly Odd Parents, Teen Titans Go, animated Disney films, Disney villains, and Top 10 Lists for anything related to any animated show, should not disqualify her from developing friendships.

No one should walk away from high school with 0 friends. Yet, here she is. Three Dog Night sang “One is the loneliest number…”

I think zero might be lonelier.


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Sophie was applying her third layer of mascara (mostly to her lashes) and muttering under her breath.

“I’m taking a big risk today.”

“What?” I asked, looking away from traffic for a second.

“Nothing,” she said quickly.

“No, tell me,” I urged. “Did you say, `I’m taking a big risk today’?”

“Yes.”

“Oh, because cheer tryouts begin this afternoon?”

“No, because choir auditions are today at school. Can I put on a song?”

She grabbed my phone and cranked High School Musical, as if on cue.

This is high school — so far, anyway — for Sophie. There’s a lot of good. And there’s some not-so-good. Yesterday I hung up the phone with the director of special ed for the school and wondered, am I doing this even remotely right? Am I asking for enough? Too much? What does this guy think — of me, of Sophie? He laughed a little when I said Sophie was trying out for cheer. What did that mean? Pride? Nerves? Something else?

My current requests: I asked if the speech therapist could work with Sophie on non-verbal social cues, with the hope of limiting what can only be called stalking. If you are the object of Sophie’s affection, watch the fuck out. If you are a teenage boy trying to navigate high school and Sophie simultaneously, I feel for you. But I’m also not your hugest fan when I hear that your phone — texts, Snapchat, Instagram — is suddenly “not working.” I do,  however, get it. But could someone else — like an adult — get it, and try to fix it, or at least smooth it over?

Isn’t there any way for the best buddies group to find Sophie some peers to have meaningful friendships with? I asked the special ed director. He said yes, acting like I hadn’t been begging for this at meetings all year. (To be fair, he’s only been at the school since January, so he’s only heard me beg once or twice. The rest of the team has been hearing it all year.)

We’ll see. Sophie is still happy at school — my main goal. It’s only freshman year. Eventually she’ll make it onto the cast of a school play or even onto the cheer line, right? She’ll make a real friend, yes?

Yesterday a friend of mine posted on Facebook, asking if anyone with a kid at her daughter’s high school would be willing to sit with her kid — who has special needs — at an event for seniors. I saw that and cringed and realized that that “yes” is not a given.

My friend’s post concluded:

I also understand this is your senior’s final hurrah, too. I respect their privilege to enjoy their last few weeks without feeling the need to embrace an outsider. No guilt. No pressure. Truly. I’m so excited for this chapter to close. Cheers, friends. We’ve lived through 4 years.

I hate to think that all Sophie will do is live through the next 3-plus years. But I’m at a loss. What should I expect? What should I do? I need help.

And so, friends, I’m crowdsourcing. Tell me your stories — here in the comments, on Facebook, message me at amysilvermanaz@gmail.com and I’ll put together a post. What worked for your high school-aged kid? What didn’t work?

What should inclusion in high school look like, anyway?


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Last night we had a family reunion of sorts. Annabelle and I had traveled to northern California for spring break — the college tour has begun — while Ray and Sophie attended his grandfather’s 100th birthday party in New York. We regrouped over beer (for the grown ups) and Cornish pasties and I realized that today was World Down Syndrome Day.

“So, um, you’re supposed to wear crazy socks or something like that,” I told the girls. Sophie made a face.

“Well, you could wear a tee shirt that says something about Down syndrome,” Annabelle said.

Sophie shook her head.

I get it. I like to say that for me, every day is World Down Syndrome Day — but for Sophie, it REALLY is. And I can only imagine what goes on in her head in such situations. I got a taste last night.

“Hey,” Ray said. “In honor of World Down Syndrome Day, we should tell people about how Sophie can do a slope equation in algebra.”

Annabelle, Ray and I started compiling a list — Sophie can do the splits, Sophie knows the capital of the Byzantine Empire, Sophie can use a computer better than her mom, Sophie can swim the butterfly, Sophie has a poodle, Sophie is an amazing modern dancer.

Sophie shook her head hard and told us to stop. Then she got up, moved to the next table, and started tapping on the phone. She came back with her own list — way better than ours. I’d envisioned 21 items in honor of that extra 21st chromosome, but Sophie got to 32 so what the heck, here (completely unedited) is her list of 32 Things Sophie Wants You to Know About Her on World Down Syndrome Day:

Sophie Likes to Make friends easy
Sophie is a nice sister
Sophie has good friends
Sophie is nice to others
Sophie has a lot of friends who are boys
Sophie is kind
Sophie is nice
Sophie likes to hangout with her babysitter
Sophie hangout with her Friends
Sophie likes watch her show fuller house
Sophie likes to lo listen to her music
Sophie cuddles with her mom
Sophie has a book about her
Sophie likes to have sleepovers with her friends
Sophie likes to travel
Sophie likes to try new foods
Sophie does not like spicy food
Sophie is awesome
Sophie is the best
Sophie is a good dancer
Sophie likes to sing
Sophie likes to act with friends
Sophie does camps in the summer
Sophie is kind to others
Sophie is sweet
Sophie likes piglet
Sophie loves To watch fixer upper and cuddle with her mom
Sophie has good clothes
Sophie has an amazing sister in The Whole wide world
Sophie likes to go shopping
Sophie does cheer
Sophie loves cranberry juice


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The Spaces in Between

posted Saturday March 3rd, 2018

 

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It was a pretty Arizona winter night. The church grounds felt like they went on for acres, probably because they did, and as I waited I tried to distract myself by wondering how much this North Scottsdale real estate is worth. A lot.

Modestly dressed middle-aged congregants gathered outside in a courtyard, lining either side of a red carpet, as an announcer I couldn’t see introduced the guests over a PA. He called each one by name, welcoming them to the church, telling them, “Jesus loves you! This is your night to shine!”

Finally, after what felt like weeks but was probably 20 minutes, he announced Sophie’s name. My little agnostic Jew bounded down the carpet, grinning, a fancy corsage hanging from her wrist, and struck several poses for the photographer.

It was awful.

And awesome.

Sophie had a blast. She ate garlic bread and sang karaoke. Every party guest got a crown.

That is where I live these days, in the spaces in between. In between awful and awesome. It was Sophie’s idea to go to the prom. I didn’t even know who Tim Tebow was, until she found a flyer at a play rehearsal and insisted I sign her up, buy her a dress and new eye makeup.

How could I explain to my almost 15-year-old that I hate it when people commit good acts simply in the name of religion, that the term “special needs ministry” makes my skin crawl? That it’s horrible to segregate people with disabilities like this? That after no one wanted to go with her to the Homecoming dance at school she finally had a chance to attend a fancy event but I wouldn’t let her?

So I took her.

I want to say that it wasn’t so bad but I just told you how bad it was. It was bad. But it was also good. Because rarely in life are things that black and white. Definitely not in this so-called community of people focused on disability rights. (Yes, I know, the title “disability rights” is controversial. There’s no right way to describe anything anymore.)

In other places, I don’t make space. None of this applies to Donald Trump or gun rights or how I feel about grammar. But in this part of my life, the Sophie part, it’s different. It has to be. This isn’t academics, it’s live time. For all of us, life is a series of constant recalibrations, moving targets. Most days, a vicious game of Whack a Mole.

If you’re looking for me, I’ll be in the spaces in between. For example:

You can be 100 percent pro-choice and still want better prenatal education for a woman who finds out she is expecting a baby with Down syndrome.

It’s possible to hate the fact that a boy with Treacher Collins syndrome was not cast in the lead for the movie “Wonder” but still love the film and have a good ugly cry, and particularly love the discussions it sparks among your teenage kids and their friends. And among you and your friends.

It could be that it was absolutely the right decision to mainstream your kid in school — and that still, every day is impossibly messy in ways that make you want to poke out the eyes of well-meaning teachers, staff and administrators, followed by your own.

It’s okay to admire the matching tattoos lots of moms of kids with Down syndrome are getting — and to also have absolutely no desire to get one yourself, not only because tattoos look like they hurt a lot but also because you’ve spent the last 15 years learning what makes your kid unique, not what makes her the same, so if you get a tattoo for her it will be something no one else has.

It’s possible for your kid to know every single student at her high school — to get high fives and hugs and lots of love from her classmates every day — and still not have a single true friend.

It’s okay to be in awe of the fact that there’s now a Gerber baby with Down syndrome, to think about what that would have meant when your own daughter was born and you felt so alone and like no one out there even knew what Down syndrome was (including you) and to marvel at how far we’ve come, even if it’s not far enough and even if there’s a very strong possibility that Gerber is a crappy company doing this for some of the wrong reasons.

It’s possible to hate the school choice movement — particularly because it excludes kids with disabilities and is re-segregating our schools — and still choose to send your typical kid to a charter school because you believe it’s the best place for her.

Speaking of that typical kid, you can simultaneously feel that having a sister with special needs is the best thing that could have happened to her, and potentially a burden that will ruin her life.

It might well happen that you grow up hating cheerleading and all that it stands for and swear that your daughters will never be cheerleaders — until the day your daughter doesn’t make the cheer squad.

You can be a huge champion of the First Amendment and still have the right to ask people to not use the word retarded in front of you.

It’s just fine if you don’t like everyone in the disability rights community. Some of them might not like you, either. Just because you both have a kid with Down syndrome doesn’t mean you have anything in common. But some of them might become your favorite people.

And it’s okay if you find yourself at church on a Friday night, even though the idea of a special needs prom makes you wildly uncomfortable, because you’re in this for your kid and she begged to go and the world isn’t perfect — and neither are you.

 

 

 

 

 

 


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So far, I have not failed at high school.

This morning — the first back after the two-week winter break — Sophie popped out of bed, drank her Carnation Instant Breakfast, and chose a cute new outfit. She refused to brush her hair, but found her ID, remembered her lunch, and cranked Stevie Wonder, then something from Glee, then the theme song to The Office in the car on the short drive to school.

“This will stay with me all day!” she announced cheerfully, pretending to play the piano along with The Office.

I, on other hand, could barely open my eyes. I piled my hair on my head and wrapped a soft red shawl around my pajamas, not bothering to change out of my slippers, looking, I’m sure, like some sort of drunk, though I swear, the strongest thing I’m drinking these days is kombucha. Up an hour before Sophie to make lunches and coffee, I was pretty much ready to go back to bed by the time we had to leave the house, and I found myself purposely missing a yellow light so I could stay in the car a little longer, prolonging the agony of the fluorescent-lit main office where I drop Sophie each morning with her aide.

“Bye Mama! Have a good day!” Sophie said, swinging on her backpack and swiping her mouth with the back of her hand in preparation for a kiss on the lips.

I slouched back to the car, where I sat for several minutes as the sun finally rose, sending emails and texts to school personnel and other parents in my ongoing, desperate attempt to stay one step ahead of Sophie.

If she’s happy, I’m happy. And so far, Sophie insists she loves high school. I’m glad one of us does and I call that success. It’s my job, I figure, to manage things behind the scenes to keep it that way. But I’m not sure how much longer I’ll be able to do it.

Let’s just say that last semester didn’t end well. Sophie failed all of her academic finals. She passed all her classes, and even did well in a couple, but those four Fs were all I saw when I looked at her report card.

I don’t care much about grades — not for either of my kids — but this is different. This is failure. This means things are not right. This is not the way I wanted Sophie’s second semester to begin.

Honestly, I’m out of ideas. Nagging obviously doesn’t work. The week before finals, I sent several emails to special ed personnel at the school, asking (begging) them to tell me how they were going to modify her finals.

Instead of responding — and working to make sure Sophie’s finals were accessible while still meeting state standards — her case manager emailed me a copy of a form he insisted needed to be signed and returned immediately. He sent a hard copy of the form home, too, very concerned that he get it right back.

I confirmed with Sophie’s lawyer that that particular form doesn’t need to returned for at least three and a half years.

And why weren’t Sophie’s finals appropriately modified? Because the paperwork calling for such a thing — her IEP (Individualized Education Plan, the legally binding document that follows her through school) —  is currently being revised, which I guess means that no one needs to bother to give my kid a fighting chance until signatures are in place.

It makes no sense. And that, my friends, is special education policy in the United States of America — and really, while I’m at it, education policy in general. There is no room for critical thinking, only space to fill in the blanks. We teach to the test, almost always with poor results, made much worse when it comes to kids who learn differently and when that kid is profoundly different but still capable of learning and growing, forget about it.

Here’s what it boils down to, here is my plea — and I bet I’m not alone:

STOP LOOKING AT PAPERWORK AND START LOOKING AT MY KID.

That’s what I’ve been asking these people to do since high school started.

They can’t. Or they won’t. Or they figure that if they ignore me long enough, I’ll go away.

Trust me, I would, if there was another fucking place to send Sophie. But there isn’t, not even in Arizona, the school choice mecca. We’re stuck with each other, high school.

At least Sophie’s happy. Those Fs aside, she appears to be learning. She’s comfortable at the school, making friends (sort of). Happy to get in the car each morning.

I haven’t failed — yet. I can’t.


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The Airing of Grievances

posted Wednesday December 6th, 2017

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Sophie’s lawyer asked me to write down some concerns in anticipation of her annual IEP meeting next week.

(IEP stands for Individualized Education Plan — the living legal document that guides/dictates the educational life of a kid with a disability.)

I smirked. Perfect timing for an airing of grievances.

I started this blog to catalog Sophie’s kindergarten year — and kept going. This past August she started high school, and I’ve been uncharacteristically quiet. Yes, it’s natural to pull back on the details as your child gets older, or stop writing altogether. There are a lot of parenting blogs gathering dust out there in cyberspace. But that’s not what this is about.

I haven’t known what to say. At first I didn’t know what to say because as high school approached, I didn’t have a care in the world. This terrified me because the last time I feel that calm was right before Sophie was born and diagnosed with Down syndrome and a heart defect.

We’d spent so many months years planning, stressing, applying, questioning — there was nothing left to do but shop for school supplies.

And then, two weeks before school started, Sophie’s lawyer called to say she was closing her practice. I hung up the phone and sobbed. This woman had been Sophie’s only legal representative — we’d waited till third grade to hire an advocate to fight for a classroom aide and to stop the emphasis on test scores that said so little about my kid. “You’ve got this,” the lawyer promised. “You don’t really need anyone.”

It’s true that at that point, everything was in place. School started okay. Sophie was on Cloud Nine, fueled by the fact that she had left the middle school dress code behind. As we pulled into the school parking lot the first day, she cranked a Taylor Swift song on her phone:

You take a deep breath
And you walk through the doors
It’s the morning of your very first day
You say hi to your friends you ain’t seen in awhile
Try and stay out of everybody’s way
It’s your freshman year
And you’re gonna be here for the next four years
In this town
Hoping one of those senior boys
Will wink at you and say, “you know I haven’t seen you around, before”
Sophie’s aide was waiting in the appointed spot — definitely not the image conjured by Swift’s independent teen lyrics. I drove away with tears in my eyes, rueful over the fact that Sophie’s high school experience looks so different than it does for most kids, but happy that she seemed excited about it. She tried out for cheer and the spring musical and didn’t make either, but loves her choir and dance classes, and, I’m told, knew pretty much every kid on campus after the first month
And then, six weeks after school started, Sophie’s aide left her job.
This woman had been Sophie’s only aide, the one hired after we’d brought the lawyer to that third grade IEP meeting. The aide — one of the most amazing people I have ever met — had followed Sophie from elementary school to middle school to high school.

Just like that, one day she was gone.

(This was not her fault — and her leaving had nothing to do with Sophie.)

Without the lawyer, without the aide, I felt like I’d been instantly transported to a tightrope miles above the city, Sophie in my arms. Sophie’s small for her age, but by no means can I hold her these days. Definitely not without solid ground beneath me.

The free fall hasn’t been fun.

I had no power over who Sophie’s next aide would be. But I did get to pick her next attorney. I met with a friend who’s also a special ed lawyer. “I can’t help you,” she said. “I’ve never known a kid with Down syndrome who’s been mainstreamed in the classroom as long as Sophie has.”

Today we have a super lawyer; hopefully she will still be our super lawyer after she reads my list of grievances.

And Sophie has a new aide. The woman seems sharp and kind. Sophie likes her. They do not have the rapport that only comes after six years together all day, pretty-much-every-day. But they’re getting there.

The damage of three weeks of substitute aides and what I’ll euphemistically refer to as “communication challenges” has not been undone. High school is hard, really hard. I think it can work. I hope it can work. It can work. I need to make it work for Sophie. She loves the school; I just have to make sure it loves her.

Easy, right? If you’re looking for me, I’ll be the one holding my breath till after that IEP meeting.

 

 

 

 

 


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Gratitude Mix 2017

posted Monday November 20th, 2017

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Election results burning in my ears, last November I made a mix tape called “Gratitude.”

The idea was to ratchet back the hate and give some thanks, but by the second or third song I’d pulled out R.E.M.’s “It’s the End of the World as We Know It” and wasn’t looking back.

This year my Gratitude Mix is more like the musical equivalent to sheetcaking — a sugary binge of stuff that sounds good and makes me feel better in the moment. Which, to be honest, is what I prefer in my music in general. And which goes along with my current television binge, Gilmore Girls, which I’m watching in its entirety for the second time. (I don’t care if you judge.)

Speaking of sheetcaking, I saw this beauty at Safeway last week and was really tempted to buy it for the dinner table. I held back. But there’s still time. No promises.

Wishing you and yours a wonderful celebration, whatever that looks like — I continue to be grateful for this space and the friends I’ve made here.

GRATITUDE MIX 2017

What a Wonderful World  * Joey Ramone

Pompeii * Bastille

Reflecting Light * Sam Phillips

Cut Your Bangs * girlpool

Tire Swing * Kimya Dawson

Could It Be Another Change * The Samples

The Only Living Boy in New York * Simon & Garfunkel

Helplessness Blues * Fleet Foxes

Strange Boy * El Michels Affair

Off She Goes * Bad Suns

Feels * Pharrell Williams, Katy Perry & Big Sean

Me Voy *  Julieta Venegas

Ordinary Joe * Terry Callier

I’m Going Down * Vampire Weekend

Hallelujah * Rufus Wainwright

Thank You Girl * The Smithereens

Up All Night * Beck

While I’m Alive * Psychic Twin

On Location * Public Access T.V.

Louder in Outer Space * Louise Post & Nina Gordon

Thank You for the Music * ABBA


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Down Syndrome Awareness Month Was a Bust. Now What?

posted Thursday November 2nd, 2017

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Down Syndrome Awareness Month was a bust this year. For Sophie and me, anyway.

Okay, that’s not exactly true. In a lot of ways, October was a terrific month, particularly when it came to educating others about Down syndrome. I got a piece published on the New York Times parenting site, and I traveled to California to speak to several English composition classes at Taft College. The month was bookended by two performances by Detour Company Theatre, the musical theater troupe Sophie is a part of; she traveled to Tucson and Tempe to perform in “Beauty and the Beast.”

And a letter I wrote on my blog to to the teachers, staff, and students at Sophie’s high school got great response — shared all over Facebook and republished on The Mighty, a high-profile site devoted to issues surrounding disability.

But Down Syndrome Awareness Month was a bust because as far as I can tell, no one who mattered — no one at her high school — read the letter. (You can read it here.)

I emailed it each of her teachers, the principal and the district superintendent. I Xeroxed copies for Sophie to hand out to classmates. It’s possible, I suppose, that someone associated with the school has actually read it, but not a single person has said so.

I had high hopes. The principal (I really like her) was kind enough to call to let me know she’d received it and that the public information officer for the district was going to send it not just to staff at Sophie’s high school, but to everyone in the district.

A few days later, I received a note from the PIO. (I really like her, too — our paths crossed years ago when she had another job and I was delighted to learn she was working for the district where Sophie attends school.)

She wrote:

“I didn’t end up sending the blog out to all of our staff. I am SO SORRY. I love the writing but I explored your site and some of your blogs use one of my favorite words – the one that starts with f and ends with k. I would be read the riot act if a teacher found that and I had sent it via the district newsletter.”

I get that. That’s why I Xeroxed the letter itself separately for Sophie to hand out. The note continued:

“However, I did write this about you and another mom that I recently interacted with and included it in my staff newsletter. xoxox”

This is what she wrote:

[IN] my World

As the parent of 23-year old daughter, I struggle with my role in her life. I still want to protect and teach as I did when she was little, but being the parent of a young adult requires that I limit these actions. So, when I recently interacted with two parents in our district who reminded me of an important role that a parent must play, I took this experience to heart. Their passionate efforts to advocate on behalf of their children reminded me of the advocacy role required of all parents, no matter the age of the child. I have already used their example to be a better parent to my 23-year old. And, the next time I take a call from an upset parent, advocating on behalf of their child, I will use my experience with Lorie and Amy to also be a better public school employee.

As I told her in my reply, that’s a lovely sentiment and I really appreciate it.

But it doesn’t do anything to educate anyone at Sophie’s school about Down syndrome. I thought about making more copies of the letter and bringing them to the principal and asking her to hand them out — I even told the PIO that’s what I intended to do (she never responded) — but (and this is not really like me) I lost steam and never did it. October ended. Down Syndrome Awareness Month is over.

Of course, as I’ve always been fond of saying, it’s Down Syndrome Awareness Day every day in my house. I’ll regroup, I’ll figure something out. (And I’m open to suggestions.) It’s too important to give up.

In the meantime, for better or worse (some days are definitely worse, high school has proven to be a challenge so far) Sophie is educating everyone around her.

And I take comfort in the fact that she’s the best teacher.

I know that, because she is mine.


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Dear  Teachers, Staff, and Students:

Welcome back from Fall Break! I can’t believe an entire quarter of the school year has already flown by. By now you might have met my daughter, Sophie, who is a freshman. If not, maybe you’ve seen her in the halls, at cheer tryouts, or singing at the school’s recent choir concert.

Sophie is probably the smallest kid in high school. She might hit 4’10″ in her Birkenstocks. Most days she can’t wait to get out of bed and get ready for school — she really hated the middle school dress code, and loves to choose her outfit each morning. Like a lot of kids, she’s not great at math. She really loves her dance elective. Pretty much every day, she eats lunch in the choir room with her friend Tatum. I think she might have a crush on a senior boy. She’s currently debating whether or not to try out for the spring musical, Shrek.

There’s something else you should know about Sophie: She has Down syndrome. Down syndrome is the most common genetic condition but don’t feel bad if you’ve never met anyone who has it; it’s pretty rare. Only about 1 in 700 babies are born with it these days.

As  you already know if you’re in class with her, Sophie is enrolled in regular high school courses; often, she has an adult working with her. It’s awesome that she has this opportunity, we call it being “mainstreamed.” Not so long ago, kids with Down syndrome and other intellectual disabilities were sent away at birth to institutions. They were not raised with their sisters and brothers, or educated alongside their neighbors.

That has changed, thanks to amazing schools like this one. But because this is a relatively new thing, it means that Sophie is a little bit of a pioneer.  Most days, that’s really cool. Every day, it’s a challenge.

Sophie was the first person with Down syndrome I’d ever met. You can imagine how awkward that was for me, since I’m her mom and we met when she was born. So I get it if maybe you’re not quite sure how to approach her — or perhaps need her to give you a little space.

In the last 14 years, I’ve learned a lot about Down syndrome, and, of course, a lot about Sophie. October is Down syndrome Awareness Month, so I’ve put together a list of things that Sophie, our friends and family, and I thought you should know about it — and her. If you ever have questions, you can find me on my blog at girlinapartyhat.com or at amy_silverman@yahoo.com. And here’s a video that explains Down syndrome really well.

Down syndrome is not contagious.

Each of us has 46 chromosomes — 23 from mom, 23 from dad in each of the millions of the cells that make up our bodies. This happens at conception, when the sperm and egg meet. Sometimes science intervenes and an embryo winds up with more chromosomes, or something goes haywire with one.  Down syndrome is also known as Trisomy 21, because it means that a person has an extra 21st chromosome. Sometimes not every chromosome is affected; that’s called mosaicism. Like Sophie, most people with Down syndrome have 47 chromosomes in each of their cells.

Because of this chromosomal difference, people with Down syndrome sometimes share similar characteristics. People with DS are often smaller in stature, have almond-shaped eyes, flat noses, straight hair, and small mouths. They can have hypotonia, which means low muscle tone and extra flexibility (you should see Sophie do the splits!). Sophie has a little more trouble than the rest of us when it comes to tying shoes, buttoning buttons, and handwriting. About half the babies born with Down syndrome have a heart defect (you might have noticed Sophie’s scar — she had open heart surgery at 4 months and again at 4 years, but we’re hoping never again). All people with Down syndrome are affected cognitively, which means learning is more difficult for them, to varying degrees.

Down syndrome is different for every person who has it.

This one is really important. It’s natural when people share a label — and some physical characteristics — to assume that they are the same. But just as that’s not the case with other groups, it’s not the case with people with Down syndrome. I’ve heard staff at the school comment that people with Down syndrome “are all nice” and “all like to high-five.” Not really. I’ve met lots of people with Down syndrome. Some like to dance and sing and act silly; others are quiet and athletic. The stereotype is that people with Down syndrome are loving. Sometimes that’s true, sometimes it isn’t. Just like with the rest of us.

Just like there’s no one out there quite like you, there’s no one out there quite like Sophie, a girl who loves YA novels, YouTube makeup tutorials, Disneyland, shopping, poodles, going out to eat, sleepovers, ballet class, the beach, Project Runway, and being with her cousins — and dislikes spicy foods, chores, riding in the back seat, and hearing her mom sing.

“Sophie’s funny, she’s creative, she’s an artist, she’s motivated, she’s determined, playful, friendly, fun, beautiful,” says her sister Annabelle, who is 16 and a junior at another high school in town. “She’s also sassy and manipulative and bossy but also the best sister.”

Annabelle’s advice when it comes to someone with Down syndrome?

“Get to know them. Talk to them. And don’t care about what other people think.”

People with Down syndrome are often just like the rest of us.

“People with Down syndrome go to college, play in bands, drive cars, fall in love, are DJs and reality TV stars, get their hearts broken, have sex, get bored, play sports, love rap music, need help sometimes, love to help other people, have jobs, get grouchy, own restaurants, are artists, wear braces, love ice cream, have lots of adult friends, are good friends, want to make friends,” says my friend Lisa, whose son, Cooper, is a high school sophomore and has Down syndrome.

People with Down syndrome might learn differently than you and I.

One of Sophie’s long-time instructors explains that often people with Down syndrome “process information differently but are able to learn. When Sophie learns a skill or concept she never really forgets it; she just may not be able to remember it on the spot. Like in a test.”

You can say “no” to a person with Down syndrome. 

Sophie is an amazing self-advocate. From the time she was a very little girl, she’s known what she wanted — and worked to get it. That’s awesome. It’s why she is so successful in so many ways. But in class or social situations, it can mean she comes on a little strong. Just as you would with any student or friend, you can tell her no! In fact, it’s a good idea. Don’t be mean, but also don’t hesitate to be honest. As a family friend put it, “Sophie wants to be seen. Like we all do.” You can acknowledge her but also let her know that it’s not appropriate to interrupt a conversation or insist on answering a question.

People with Down syndrome might not want to talk about it — or have it.

When Sophie was 8, she started telling us that she doesn’t like having Down syndrome. She struggles with it. Like most high school kids, she wants to be just like her peers. If you ask her about what it’s like to have Down syndrome, she probably won’t want to talk about it.

She is happy that I’m writing a list. Sophie wants people to know what DS is. I asked her if there was anything she wanted to say here and she said this:

“Don’t judge the people with Down syndrome.”

 


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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