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.

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:

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.

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.”

I was right. Sophie is okay.

More than okay. She called me after school on Thursday — she’d learned that morning that she didn’t make the freshman cheer line — and before I could ask about that, she launched into a story about a boy she’s got a crush on. Over the weekend she showed off her dance moves on the beach, played with her cousins, ordered too much sushi, and quarreled with her big sister in the back of the car on the long drive home. Teenage girl stuff.

Once or twice she mentioned something about trying out for cheer again next year and instead of saying, “No fucking way,” I smiled and said nothing and waited for her to change the subject. Ditto for when she pulled up photos on her phone of cheerleader costumes for Halloween. Mature mom stuff.

Not that I’m much of a grown up. I’m still plenty pissed, mostly at myself — for thinking that Sophie would make cheer, for tossing her in to compete against her typical peers. But that’s not why I’m here. I wanted to share with you some of the incredibly insightful things other people have had to say in the last few days about competition, friendship, acceptance, and inclusion.

Typically, I don’t recommend reading the comments on anything. But I learned a lot from these. Mainly, how many of my friends on social media also tried out for cheer and failed. But other things, too. Including that there are lots of different perspectives on how inclusion should go down; that it’s not just kids with identifiable disabilities who are getting left out; and that maybe sometimes failure should be an option.

Some days, we’ve got to sit with the fact that we don’t have all the answers. Those are the toughest days. Which is why it’s nice to have so many smart friends.  Here’s what a few people had to say (feel free to visit my Facebook pages to read more –there are good comments on previous posts here on Girl in a Party Hat, too) when I posted about Sophie not making cheer and my feelings about that.

From Lisa, mom of Cooper, who is a sophomore in high school and has Down syndrome: 

I think for those of us with disabilities and raising kids with disabilities, it’s just a bummer that everything that provides good opportunities for socialization, exercise, teaming up, etc has to be competitive. It’s almost impossible to find inclusive opportunities once we or our kids reach high school – we can’t just play for the love of sport, unless we are segregated into disability-only programs.

….Another lingering thought…our kids are BRAVE. By definition, having a physical or intellectual disability means trying and failing pretty much every day, at every stage in life. People with disabilities have to give twice the effort and still don’t “measure up” to nondisabled peers. So the idea that failure is good for us/them doesn’t take into account the real and persistent inequities – big and small – that make up the human experience when your body or your brain work differently.

From Rachel, who is a special education teacher and Sophie’s beloved jazz teacher: 

Okay, don’t jump all over me for this, people, but is it possible that inclusion also includes being given the opportunity to fail? If this was a situation in which Sophie was the only girl who didn’t make cheer, I would be all over it, and I’m sure you would be too, Amy. But… wouldn’t we be just as upset if they put her on the team as their “Special Education mascot?” Wouldn’t that be infuriating, too? Just putting it out there. You know she’s one of my favorite humans on the planet. 

From Janee:

I’ve been thinking about this all night. I think when we talk about inclusion and inclusive practices its hard to imagine, but it’s so much easier when our kids are young. The heartbreak is not that [Sophie] didn’t make a team, but that as she gets older built in opportunities for inclusion get fewer and farther between. I have had this feeling of doors closing when our local softball teams got better and Ruby couldn’t keep up, when theater practice became too loud for her, when Girl Scouts became more mature. It’s hard for us moms to see how they will be included as this gap gets bigger. Just my thoughts. Big hug to you and Sophie!

From Laura:

My oldest has Muscular Dystrophy and tried out for cheer in 8th grade. She can’t jump, run, climb stairs and can’t raise her arms. My career was social service and had been “trained” in dignity of risk. I was gutted throughout the process regardless. (And many times before and since) It tears you up inside yet you smile and cheer those little ‘do anything’ spirits on. Cry in the closet later.

These experiences, for me, seemed unmanageable and yet here we are now, that little warrior and me, no regrets, battle scarred, powerful, experienced. We still run in heart first into adventures cuz we know we will survive whatever the outcome.

Jennifer, founder of our local Gigi’s Playhouse and mom of Kaitlyn, who has Down syndrome and recently graduated high school:

I have so many things to say about this. Kaitlyn didn’t have to try out…I made a phone call to the coach, asked if she would consider the possibility of having Kaitlyn on her team, we met and Kate was a JV cheerleader! Her sophomore year the Varsity coach wanted her….I was hesitant because she loved coach Jane…but Coach Dwayne was adamant. The next 3 years were amazing. For Kate, for her team, for the fans in the stands…it was inspiring. It was humanity at its best. It was young women learning how to hone their empathy and parents giving up the perfect image of what a cheer line should be and accepting it as something even more beautiful than they could have ever imagined. We traveled with the team to Worlds in Orlando and when the team sang “Lean on Me” before their performance they looked for Kate, called her over and held her in the circle. She rarely went to all practices…and sometimes only stayed for half the game. You wanna know who was more impressed than anyone though?!! Me! This was inclusion at its finest. It was leveling the playing field for someone who didn’t choose her diagnosis but wanted a chance to participate. It was coaches and admin bending to meet her halfway. It was young girls who instead of being bullies put their arms around her and chose her when they otherwise might not have had the opportunity….[So many people] changed our lives in ways that made me a stronger mother. That strength led me to open GiGi’s Playhouse [in Scottsdale]. I know you have had so many amazing experiences with Sophie. She is an incredible young lady. She did everything right…now we just need the world to respond accordingly. Love you both–hoping they change their minds. They have no idea what they are missing.

As I responded to Jennifer, I am not going to ask the cheer coaches to reconsider. No way. But I do kind of hope someone shows them — and every other coach out there — what she wrote.

The conversation about inclusion isn’t over. We can’t let it be. My friends won’t let it be. And neither will Sophie.

Does anyone need a giant white cheer bow?

This morning Sophie was ready early, waiting by the back door, yelling at me to hurry up so she could get to school and see if she made the freshman cheer line.

“Now remember, you might not make it,” I said as we climbed in the car. “How do you feel about your chances?”

“I know,” she said. “Good.”

I’ll be honest: Even though I warned her all along that she might not make it, this morning as we drove to school, Sophie and I both thought it was a sure thing. Last night Sophie’s nanny (who had been at most of the practices and the try-out) dropped her off and announced that Sophie had nailed all the cheers, that she smiled and that she was one of the loudest.

“All the judges seemed to really like her,” she told me. And with that, I let down my guard, the first thing they teach you not to do at that How-to-be-a-Parent School that doesn’t exist.

I didn’t worry about Sophie’s extra questions during try-outs, or the time she’d made herself the leader at practice, or the fact that she told the coaches it was not appropriate to make the girls run in 110 degree heat. Or that no matter how hard she tries, and no matter how well she learns any kind of dance or cheer routine, she’s always a beat behind.

I knew she was going to make it.

I kissed Sophie goodbye. “Text me a selfie if you make it, okay?” I asked. “I want to see your face!”

She nodded, grinning.

I dropped her with her aide and Sophie rushed off to the activities office. I drove away, already composing a blog post in my head, ready to accept all those virtual high fives on social media.

I still had mixed feelings about cheer — and no desire to attend a football game — but after a few glimpses of how well Sophie interacted with the other girls, how well (aside from not wanting to run, and she was not alone there, and the part where she made herself the leader) she followed directions and learned — and performed — the routines, I was thinking that she had a real chance, and thinking about what an important piece of her development this could be. Of how she might actually make a real friend this year. Of how this school would truly be practicing inclusion, like the district’s special ed director had assured me they would when we spoke last year.

To be fair, that man never guaranteed that Sophie would make cheer. And I would never, ever expect that. But now I need to call myself on my own shit because maybe, this morning, I was expecting it.

A few minutes later, Sophie texted me a selfie. In it, she’s crying. Below it, she wrote  “Nope.”

Oh fuck.

Sophie is okay. And if not, she will be soon. She has drama, ballet, jazz, and swimming after school. She’s in dance and choir at school. She wants to sign up for the Spanish Club.

She can still be in Special Olympics cheerleading.

I will be okay, too. I have to be, right? I’m the one who assured the cheer coach last week that all we wanted for Sophie was a fair shake, a chance to try out. That we’d understand either way.

And now I have to understand.

I’m itching to email the coach and ask how close Sophie got, what my kid did wrong, what she can do better in the future, and — while I’m at it – why on earth they wouldn’t include a kid with so much energy and enthusiasm , who tries so hard, who works twice as hard as anyone else, who knew all the cheers and smiled and wore the giant bow. Why they didn’t include the kid with Down syndrome when all I see on social media are cheerleaders with Down syndrome.

I want to ask everyone at that school just what inclusion is supposed to look like, both in and out of the classroom.

Instead, I’m going to try to say nothing. That is not my strong suit. But we’ve only been at this school for a hot minute, and I need to give this some time, gather some context.

And look, I fully realize that I’m completely biased here. (And possibly slightly unhinged.)

Sophie will be okay.

And if I’m not, that’s okay, too. In fact, it’s probably better. Because it’s my job to ask the hard questions — even if for now I’m only asking myself.

Sophie is trying out for freshman cheer.

Sitting under the fluorescent lights of a big public high school gym for two hours yesterday afternoon, my thoughts veered wildly — from total disgust with our society for condoning (no, make that celebrating) the idea that it’s cool for girls to put on skimpy outfits and jump around with pom poms, encouraging boys to smash their heads into the ground and each other in order to get an oddly-shaped ball over a line, to the extreme envy I’ve felt my entire life, any time I’ve seen a cheerleader.

But mostly I thought about Sophie, and how she’s the bravest person I know.

There are maybe 50 girls trying out  – the gym was packed — and Sophie’s the only one with Down syndrome. (She appeared yesterday to me to be the only one with any sort of disability.) Before they gathered in the gym, the girls met at the track, where they ran a mile. Not every girl made it around four times, but most did. Except for the first few yards, where she sprinted ahead — a tiny dervish in a tank top and brightly-patterned leggings — Sophie was at the very back of the pack. She ran maybe half a lap before stopping to walk, and then trying to stop altogether, before the coaches urged some sweet girls to gently encourage her on.

It was 103 degrees at 5:15 yesterday afternoon in Tempe, and I was a little concerned, particularly when Sophie’s face remained flushed for most of the rest of the evening, even once the girls were sitting in the air conditioned gym and the rest of them seemed fine.

Although she’s very flexible and can do the splits like nobody’s business (thanks to hypertonia, a condition often associated with Down syndrome), Sophie couldn’t do the stretches the other girls did. In the car after practice, she rubbed the spot on her chest where the surgeons sawed her chest open twice many years ago to fix her heart, and said, “The stretching hurt my scar.” But she didn’t complain for the whole two hours. And I only noticed her stick her thumb in her mouth once.

She asked more questions than the others, but for the most part, Sophie was just another girl trying out for cheer. Watching her go through the paces (again, and again, and again — they all had to), her brow furrowed in concentration, I couldn’t help but notice that Sophie tries twice as hard and she’s still a beat behind.

That sounds about right for life in general for Sophie, I thought, my ears ringing with calls for “defense!” and the “1, 2, 3, 4, 5, 6, 7, 8″ I’d hear in my dreams all night.

Sophie has been on cheer lines before, in junior high and Special Olympics, but even though there don’t appear to be any gymnastic skills or tricks required here, high school cheer is different. It’s much harder. The routines are longer, there’s more concentration required, precision expected. The stakes in life are getting higher for Sophie, and for the most part there’s nothing I can do to stop it. I thought cheerleading would be an exception. I tried for months to downplay high school cheer, to dissuade Sophie from trying out, figuring it was totally out of reach and much easier to distract her than risk her trying out and being turned down. I encouraged her to join Speech and Debate instead. She just gave me a dirty look. (I am so uncool.)

After she saw the cheer line at orientation, Sophie was obsessed. As with many things involving my younger daughter, I had no say in the matter.

So I’m on the hunt for all-white Velcro tennies since Sophie still can’t tie her shoes, and this weekend I’ll drag my ass to the mall to buy a giant cheer bow (because both all-white tennies and giant cheer bows are required just for try outs — I will never understand this subculture), and my teeth will remain gritted until word comes back next week of whether or not she makes it.

If she does, it looks like I will be attending high school football games. If she does, I’ll be impossibly proud.

And if she doesn’t, I’ll still be proud. Maybe even prouder. It’s what we all look for as parents, right? The opportunity for our kid to try out for something, to reach and attempt and maybe fail. Or maybe not. I almost robbed us of it, this time, but Sophie wouldn’t let me.

Her instincts might have been spot on. This feels like a comfortable space in which Sophie can excel and make it — or not. I am probably being naive, but I really hope a spot for Sophie wasn’t pre-ordained the moment the coaches heard there was a girl with Down syndrome who wanted to try out. I hope that if she does make it, she’s not just a mascot, a warm fuzzy for everyone else. I hope she deserves a spot. And if she doesn’t, that she’s urged to try again next time.

I am cautiously optimistic after watching the coaches and girls encourage Sophie to run yesterday. I’m trying to feel that way about high school in general, but it’s too soon.

We’ll start with cheer. Final tryouts are Wednesday. As we drove home last night, Sophie admitted she’s nervous, sticking her forbidden thumb in her mouth. “I get it,” I told her. “But either way, I’m really proud of you for trying. Are you proud of yourself?”

She nodded silently, reaching her other hand out for mine.

I’ll let you know what happens.

I don’t get out much — the editor’s lament — but this spring I made a point of inviting myself to artist Monica Aissa Martinez’s central Phoenix studio. She graciously agreed. I wanted to see up close how she maps people. It’s pretty literal, this mapping. The artist’s subjects aren’t exactly naked; it’s more of a BodyWorlds experience but so much more. I’d seen images of Martinez’s work — watched it evolve over the years — and I was captivated.

Our work is so different, and yet similar. From the time Sophie was very small, I’ve considered her parts while trying to make sense of the whole of her. On a cellular level, Sophie is different from Ray, Annabelle and me. And likely from you. That third 21st chromosome affects every bit of the matter that makes her — and impacts her from head to toe. In stripping away the skin and mapping what’s underneath, with particular attention to medical traits and conditions — as well as a few spiritual ones — Martinez does what I’ve been doing. Or at least what I’ve been trying to do. She completely kicks my ass on this stuff in the best ways.

I’ve been wanting to write about the experience of visiting Martinez’s studio and what happened next, but for once I’m at a loss for words. She describes her work so much better than I ever could, and it’s all here on her blog. For my part, I’d rather tell you about it through her pictures. But first, I will need to offer some back story. I stopped by her studio in the spring, and Monica and her husband Eddie then came to my book launch. A little while later, she sent me a photo — my book, filled with sticky notes.

Martinez had decided that she wanted to map Sophie. I was thrilled. I stopped by again, this time with Sophie, who was enchanted by Monica and agreed to a photo session. As the summer went on, the artist shared pieces of her work on social media and in blog posts. It’s just gorgeous. One of the images made it onto the cover of the alternative newsweekly in Portland, Oregon, and I hope the work is eventually shown far and wide — it’s a terrific way to introduce the world to a person with Down syndrome, which has been my goal with my own work. Martinez did extensive research into many aspects of Down syndrome — particularly the heart, and the defect Sophie and many others have (complete A/V canal) and also included specific aspects of Sophie, like the space between her first and second toes, her fissured tongue and her love of paint brushes.

As summer ended, Annabelle, Sophie and I visited the studio together, eating pizza with Monica and Eddie (they made sure to have cranberry juice for Sophie, that’s her favorite) as we admired the larger-than-life size piece in person.

As we left, Martinez remarked that she had a few finishing touches to add. But someday soon, if not already, she’ll be completely done with this map of Sophie. I hope you get to see it.

My work is far from over. Every day, the landscape of this life, of this little being, shifts. Capturing it on paper is a challenge and a joy.

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.

October is Down syndrome Awareness Month, so my Facebook feed is full of beautiful photos of kids with DS and wonderful explanations of Down syndrome. Lots of people are posting a popular short essay called “Welcome to Holland.” I’ll be honest. It’s not my favorite. Here’s why, in an excerpt from “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” published this spring by Woodbine House.

Years ago, I interviewed a pediatric neurologist in Phoenix for a story I was writing about autism. He was a gentle older man confounded by the fact that the rate of diagnosis was rising; in contrast, my story was about parents who resist a diagnosis, who are in denial.

Before we dug into science and statistics, I explained to the doctor that I was intrigued by the way autism was diagnosed because I had a young daughter with Down syndrome—a question answered with a blood test at birth (or a diagnosis before that, even) as opposed to the never-ending questions surrounding an autism label. Autism can’t be diagnosed with a blood test, and not prenatally at all, and symptoms typically don’t appear or aren’t noted until the child is two or older.

And then actually testing for autism is a tricky proposition. In many ways, it’s like pornography—the medical profession knows it when it sees it. That’s not good enough for some parents, understandably.

It’s a tricky, complicated subject, and, at the time I was writing the story, it was frankly a welcome relief from thinking about Down syndrome 24/7. I didn’t mean to make Sophie more than a passing reference in my conversation with this busy physician. But as soon as he heard “Down syndrome,” the doctor was up and out of his chair, rushing out of the room and returning with a grin and a typed sheet that had obviously been Xeroxed many times. The words were hard to read, tilted and worn.

No matter, I’d already read “Welcome to Holland.” I smiled and thanked him and tucked the paper inside my notebook, trying not to cringe visibly. The short passage was written by Sesame Street’s Emily Kingsley in 1987 about her son Jason, who was then thirteen.

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this,” she begins.

Then Kingsley shares a metaphor that will later be used in the title of books, published all over the place, Xeroxed repeatedly and handed to parents like me.

It’s like you’ve planned a trip to Italy, Kinsley writes – but instead wind up in Holland. It’s still beautiful, it’s still amazing, but it’s different, disconcerting at first.

“The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.”

Kingsley concludes:

“If you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”

I love Sesame Street, and I have nothing against Emily Kingsley. But I was never a fan of “Welcome to Holland.”

I’m sure many parents have found solace in what they see to be great insight. Not me. I’m not alone; in fact, there are entire online forums devoted to the hatred of this piece.

It’s sappy. It’s simplistic in a way that having a kid with disabilities is not and never will be, not for me anyway. And for a long time, I was still too hurt and angry for platitudes. Looking back now, I realize that part of what upset me was that it felt like this was all anyone was handing me – this comparison between these two places. I needed more.

Ray and I had been to both Italy and Holland before Sophie was born, and I didn’t need to be reminded of carefree trips to Europe at a time when I was quite sure my life had ended.

“You know, I’ve been to Amsterdam, and THIS IS NOT LIKE AMSTERDAM,” I said to Ray, waving the paper, gritting my teeth. “I don’t see hash bars or tulip fields or awesome flea markets in this scenario, do you?!”

He just made a face.

I knew I was supposed to fit into this new role as parent to a kid with a disability, but I didn’t know how to do that. Those moms were harried but tender, stoic and knowledgeable. They kept their hair short, drove light-colored mini vans, and always had a Wet Wipe ready. They were selfless, kind, and accepting. They did not wear make-up. I had the last one covered; other than that, I was fucked.

“You know, I’m not your typical special-needs mom,” I told a nanny candidate when Sophie was very young.

“Yeah, well, who is?” the confident young woman shot back—snarky but correct. I hired her, warily, and added my faux pas to a quickly growing list of things I was ashamed I’d said.

The truth is that I was watching my friends go somewhere while I was stuck someplace else, a place with medical scares, staring strangers, preschools that wouldn’t take my kid, sleepless nights worrying about her future—and mine.

I was drowning and I needed help.

(Gorgeous artwork above by the incredibly talented Monica Aissa Martinez. This is Sophie’s karyotype. Monica “mapped” Sophie this summer. More on that soon.) 

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.