I've learned there is no defining Sophie. There's no saying what she may or may not do. She'll do whatever she wants.

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Karina Bland

Karina Bland, The Republic | azcentral.com Published 11:11 a.m. MT June 30, 2016 | Updated 11:49 a.m. MT June 30, 2016 Sawyer and Sophie talking over ice cream. (Photo: Karina Bland)

Sophie Stern is 13 and she is in my back seat, her hands full ofÂ cell phone.

Sheâs chatting nonstop, mostly to my teenage son. She does answer my questions, if I can get one in when she pauses to take a breath.

âSawyer, can I get your number?â she asks my teenage son. Sure, he says, and recites it to her.

âIâm going to put you in as âBaby,â OK?â she says.

Sawyer laughs. âGo for it,â he says.

âDo you want my number, Sophie?â I ask.

Like I said, sheâs 13 â and Iâm not a cute teenage boy.

Sophie has always liked Sawyer better. Iâve known her parents, Amy Silverman and Ray Stern, both journalists, since the late 1980s but really got to know them when we became parents and our kids attended the same elementary school.

Sawyer is two years older than their older daughter, Annabelle. When Annabelle was in kindergarten, she wrote a play, âThe Four Fairiesâ Wish,â and asked Sawyer, who was 8, to play The Dragon.

It isÂ the first time Sawyer remembersÂ meeting Sophie, whoÂ was just 3 then, tiny with messy blonde hair and a scar on her chest from the first time she had open heart surgery. She had the first surgeryÂ soon after she was born; she would have a second surgery at 4.

Sophie has Down syndrome, but I donât ever remember Sawyer asking me about it.

When Sophie started kindergarten, I told Sawyer she might need some help.

I didnât realize how much he would take that to heart. When Annabelle was in kindergarten, she wrote a play, âThe Four Fairiesâ Wish.â She and four friends would play the fairies and a princess. But they needed someone big, someone menacing to play The Dragon. They asked Sawyer, a second-grader. (Photo: Amy Silverman)

Doing what no one thought she could

I went to elementary school with a girl who had cerebral palsy and had a friend in high school in Phoenix who used a wheelchair, so I took it for granted that Sophie would be at the same school as her sister and Sawyer.

Students with disabilities had been going to school with their peers in neighborhood schools for decades. As a reporter, I had written about inclusion, and it was widely considered a good thing under the right circumstances for both disabled and non-disabled kids.

But Sophieâs parents have had to battle to get her into school sinceÂ she was 2. The owner of one private preschool told them flatly, "We don't take children with Down syndrome.â Others were more coy. More from Karina Bland

Countless phone calls and dozens of tours later, Amy found a perfect preschool for Sophie.

When it was time to start kindergarten, the neighborhood school enrolled her but Amy couldnât help but feel it was because the law required it. School officials had suggested she take her to another school with a separate program for children with Down syndrome.Â But Amy wanted Sophie in her neighborhood school with kids she knew and with her sister.

Down syndrome is a genetic disorder caused by an abnormal cell division, which results in an extra 21st chromosome. It can vary in severity but causes lifelong intellectual disabilities and developmental delays.

Yet the school district determined Sophie didnât need an aide.

When Amy worried about the kindergartener-to-teacher ratio at lunch recess, about 100-to-1, the principal said that if Sophie couldnât manage like the other children, she could go someplace else.

So Sawyer, without anyone asking him and without telling anyone, would wait for Sophie to finish eating, help her throw away her trash and walk with her to drop her lunchbox at her classroom door and then out to the kindergarten playground.

Then Sawyer, by then a fourth grader, would bolt to the big kidsâ playground to play for a few minutes before the bell rang.

Amy ended up hiringÂ college students who would sign in at the front office as âvolunteersâ to help Sophie through her school day. She would be in third grade before the district provided an aide, and not until after her parents hired an attorney.

In the first week of kindergarten, Sophie made a real best friend and wrote her name in crooked letters, something an occupational therapist had said sheâd never do.

Since then, Sophie has done a whole lot of things that someone, at some point, said she probably wouldnât be able to do.

Apparently no one told Sophie. Sophie attended a drama camp at Greasepaint Youtheatre in Scottsdale, where she was happy to discover Sawyer would be her camp counselor. (Photo: Amy Silverman)

Purple? Please. 'Turquoise is in season'

One night in May, when I met Amy and Sophie for dinner at our favorite neighborhood Thai food place, Sophie and I ignored her mom and the menu until we had rehashed the latest episode of âDance Moms.â

Sophie takes ballet at Dance Theater West like a lot of otherÂ kids and dances onstage alongside them. She also acts, most recently with Detour Company Theatre, a theater group for people with development disabilities. She played young Princess Fiona in the musical âShrek.â

Sophie loves to read. She likes school, but she hates the dress code of collared shirts and khaki shorts. Sheâs on the cheer squad and takes musical theater.

Her favorite color for forever was purple, but not anymore. âItâs out of season,â Sophie says. âTurquoise is in season.â

She has a wild sense of fashion â sheâs wearing a black and white gown for lo mein. So I take her advice.

Sheâs honest to a fault, even giving away her grandmother GaGaâs gate code.

The restaurant is out of lemonade, so her mom pops next door to Subway to buy a small bottle. Sophie points out a sign that prohibits any outside food or drink.

We talk about what a likely jail term would be, giggling.

What Sophie doesnât often like to talk about much is Down syndrome, and sheâs doing a lot of that because her mom has written a book about her, âMy Heart Canât Even Believe It: A Story of Science, Love, and Down Syndrome.â

Sophie hasnât read the entire book, but sheâs flipped through it. She looked first for the word âcuddle,â her favorite thing, she says, leaning into her mom.

The title comes from something Sophie said.

'My heart can't even believe it'

Amy had been waiting to board a flight to New York a few years ago when she discovered a video Sophie had recorded on Amy'sÂ cell phone. Sophie clearly wasnât happy that she wasnât going along, but she told her mom she would miss her, delivering the killer line: âI love you so much my heart canât even believe it.â

âI said it first,â Sophie says.

âYou did say it first,â Amy confirms.

Amy had been researching this book since Sophie was born really, dropping articles and books, names of parents and experts into a Rubbermaid bin, too wrapped up in the day-to-day care of her new daughter to do more than that. Author Q&A: Amy Silverman on raising daughter with Down syndrome

Sophie was the first person with Down syndrome Amy had ever met.

Like her daughter, Amy is honest to a fault, though she can keep GaGaâs gate code to herself. She writes frankly about her fears, how she searched for answers for what Sophie would be capable of and why she didnât have curly hair like the rest of the family.

She writes about becoming an unwitting advocate for the disabled, including asking people to stop using the âr-word,â as in, âThatâs so retarded.â She had to stop using it herself.

âI donât know that one,â Sophie says, not looking at either us. âI know radius â thatâs a math term.â

Sophie likes math. Her mother does not.

âShe told me that no adult ever uses math,â Sophie says. She rolls her eyes.

Sophie shows me how to find the volume of a pyramid, drawing a triangle on the page of my notebook under where I was taking notes.

âYeah,â Amy says, picking up the menu, âno adult ever usesÂ that."

On our way out, Sophie confesses to the restaurant owner about the contraband lemonade.

âThatâs OK,â the owner tells her. âYouâre a favorite customer.â Sophie is honest to a fault, turning herself into the restaurant owner for violating the posted policy. We giggled about possible jail terms. (Photo: Karina Bland)

A baby sitter, a baker and a hair dresser

As we drive to the ice cream shop on another day, Sophie points out the high school sheâll attend one day. She expects she will make the cheer squad there, too.

Her mom and sister get to the shop before us.Â I pull halfway into a parking space before I notice it was marked as disabled.

Sophie pipes up, âYou can park there because I have Down syndrome.â

Itâs OK, I tell her. There is another space behind us, and I back into it.

I wonder if Sophie will learn to drive. Her mom wonders that, too, and whether she will go to college, marry or have children of her own. She worries most that Sophie will be lonely.

Somehow I doubt that. I had watched Sophie work the crowd at her momâs reading at Changing Hands Bookstore in Tempe.

Sophie had hugged me and then introduced me to a few people she thought I should know. She took the stage with Amy and then the microphone. She says she plans to be a baby sitter, a baker and a hair dresser.

She spots her sister and dad at the back of the crowd and adds, âI love you, Annabelle, and I love you, Dad.â His name is Ray, she clarifies for the audience. Sophie speaks during her mom Amy Silverman's reading from her book, "My Heart Can't Even Believe It," at the Tattered Cover Bookstore in Denver. (Photo: Amy Silverman)

I wish I had her confidence, I tell Annabelle, whoâs 14, over ice cream. So does she.

âShe definitely has more confidence than me â and most people I know,â Annabelle says.Â âShe really doesnât care what people think.â

Does she mind that her mom wrote a book about her? âI love it,â Sophie says.

Sawyer and Annabelle exchange a look, both clearly disagreeing. The plight of being writersâ children.

Two copies of Amyâs book are on the table, purchased by a friend of mine who asked if I could get Amy to sign them. (Both she and Sophie do.)

A woman who had been sitting at the next table asks about the book. Amy recognizes her as a participant in Special Olympics.

The woman says she thought Sophie might have Down syndrome, but that it was difficult to tell.

There is an awkward silence. Sophie puts her thumb in her mouth.

Amy asks Sophie if it upset her that the woman asked if she had Down syndrome.

âIt doesnât hurt my feelings,â Sophie says. âIt just is what it is.â Sophie Stern, 13, takes a selfie with her sister, Annabelle. (Photo: Karina Bland)

Pictures of cute boys

I ask Sophie if I can take a picture of her and Sawyer. She wipes chocolate ice cream from her mouth with a napkin, lets down her hair and shakes it loose. I watch her lean into Sawyer.

Like she says, it just is what it is. I've learned there isÂ no defining Sophie. There's no saying what she may or may not do. She'll do whatever she wants.Â Right now, she wants to smile for a camera next to a cute boy. Of course she does. She's 13.

I show her the picture.

âThatâs a great one,â she says.

âIâd send it to you,â I told her. âBut I donât have your numberâ¦â

Sophie laughs and takes my phone to tap in her number.
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