Sophie plays cards with her big sister.
Sophie plays cards with her big sister.
Evie Carpenter

A Mom's Open Letter to U.S. Senators: Read Sophie's Story Before Voting for Betsy DeVos

UPDATE: Vice President Mike Pence broke a 50-50 tie in the U.S. Senate today, approving
 the nomination of wealthy philanthropist Betsy DeVos as Secretary of Education.

Each school day morning, I drop my daughter Sophie off at our neighborhood public school, and spend much of my drive to work thinking about how grateful I am for the teachers and staff at this junior high who educate my kid and hundreds of others each day, for little pay and — these days — even less respect.

Every kid is a challenge, but Sophie more so. She has Down syndrome. At 13, she's fully mainstreamed in the eighth grade.

Despite what you've read about the charms of school choice, it's our local public school system — not charter schools, not private schools — that has welcomed her with open arms and made the accommodations necessary to keep her with her typical peers, something that's made all the difference for my kid.

Sophie is a cheerleader and student council representative. She doesn't do so well in math (me either!) but excels in English and aced her most recent social studies test. She loves school. She works hard, and so do her teachers.

Last week, Arizona Chamber of Commerce President Glenn Hamer rewarded these people by calling them "crybabies" for complaining about an average salary of $40,000. This guy reportedly makes well over $250,000 a year. I'd like to call him something far worse than a crybaby, but I'm trying to keep this post clean.

Tomorrow, the United States Senate most likely will vote to confirm Betsy DeVos as Secretary of Education. Like many in my community of parents of kids with disabilities, I am deeply concerned (okay, I'm totally panicking) about the future of public education and special education in the U.S. after hearing DeVos explain how little she knows about special education law and how little she cares for public education.

I called my senator to urge him to vote against DeVos (he won't), but that doesn't feel like enough.

So I'd like to tell you a story — an excerpt from my book, "My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome" — about Sophie's kindergarten experience.

For me, it speaks volumes about small kindnesses, big policies, and how I just don't understand why we undermine public education.

The night before Sophie’s fifth birthday, I put her to bed and snuck a few more minutes with Annabelle — the privilege of being the older, almost 7-year-old sister.

“Sophie’s turning five tomorrow,” Annabelle said as we settled in on the big red couch in the living room.

“Yes.”

“Is she really going to kindergarten? She doesn’t talk very well.”

“You know why that is, right?”

“No.”

“Well, Sophie has Down syndrome. That makes her a little different from us, from other kids her age.”

“Yeah.”

Luckily, my husband, Ray, had just come in from a bike ride. He was summoned to the couch, where he explained that every person starts with one cell, and that in Sophie’s case, that cell was different, and, therefore, every part of Sophie is just a little bit different. Sometimes, more than a little.

“Does that make you sad, that she’s different?” I asked.

“No,” Annabelle replied, matter of factly. “If that’s her, that’s her.”

I hugged her and wished the rest of the world was as sensible. I also had to silently agree that I, too, wasn’t so sure about this whole kindergarten thing.

Mainstream her in kindergarten, my friends in the disability community said in unison, a Greek chorus.

If it’s ever going to work, it will work now.
This might be your only chance.
You don’t know what will happen unless you try.
Do it for Sophie.
Try! Try! Try!

So we did it. Sophie joined Annabelle at our neighborhood public school, despite some protests from administrators.

The first day of kindergarten, I helped Sophie get dressed in a polka-dotted top and skirt and matching tennis shoes with Velcro straps that I’d scored on the sale rack at the Gap, and convinced her to let me pull half her hair up off her face.

At school, I felt other parents watching me, convinced, I was sure, that Sophie was someone’s younger sister, not someone who belonged at this school. She was so much smaller than the other kindergarteners. I lurked in the corner of the classroom as the kids took their spots on the bright blue carpet.

The bell rang and the rest of the parents left, but I stayed. The principal’s voice announced the Pledge of Allegiance over the loudspeaker, and to my surprise, of the two dozen students, just one kid popped up, put her teeny-tiny hand over her heart, and began to recite along with the principal and teacher.

Sophie.

Well, at least preschool had taught her something, I thought, grinning through my tears as I slipped out the door to join some of my mom friends on the grass outside the classroom.

I worried a lot about the student-teacher ratio, but I wasn’t worried about the teacher. Sophie had been assigned to Jennifer Zamenski, Annabelle’s kindergarten teacher.

In more than a decade of teaching, she’d only had one other student with Down syndrome, but Ms. Zamenski and Sophie had chemistry. From the day she met her, Sophie would pretty much do anything Jen said. Never before or since has anyone had that kind of sway with the kid. Jen couldn’t wait to get Sophie in her kindergarten classroom, which was all I needed to know. Sophie was wanted.

When it was Sophie’s turn at kindergarten, Ms. Zamenski invited her to come to her classroom before school started — even before Meet the Teacher Night — so she could get comfortable. She knew Sophie had trouble with scissors, so she got assignments ready ahead of time, modifying them so Sophie wouldn’t have to struggle.

Late on the afternoon of the first day of school, my cellphone rang. She must have been exhausted, but Ms. Zamenski was calling to fill me in on Sophie’s day, which had gone really well.

“Where are you?” I asked, hearing noise in the background.

Jen was at Wal-Mart, buying a stepstool.

“Some of the kids can’t reach the sink in my classroom,” she said. Later, I realized it was probably Sophie who couldn’t reach; I bet the rest did just fine.

As Sophie’s future kindergarten teacher, Jen had been at a meeting the previous spring at Sophie’s preschool, where the occupational therapist had announced that Sophie would never write her name. “She’ll have to make an X,” she said.

I didn’t forget that, and apparently neither did Jen.

At the end of that first week, the phone rang.

“Guess what Sophie did today?” Ms. Zamenski asked. She sent home the proof, the letters large and crooked, faint in pencil, but discernible. I cried.

I worried a lot about Sophie. I worried about Annabelle, too. This was the first time the two were attending school together. How would the other kids react?

I asked Annabelle about it every so often, trying not to make a big deal out of it. She was proud to be Sophie’s “reading buddy” in the second grade/kindergarten match-up, and aside from the occasional query about whether Sophie was a midget, there wasn’t much to report.

When the science fair rolled around in late winter, the topic came up. Annabelle had originally decided to do a display on her fossil collection. I couldn’t resist suggesting that she change her topic to Down syndrome and was surprised when she jumped at the idea.

It was fascinating, watching Annabelle process something I hadn’t fully digested yet myself. One night she worked on a drawing — a family portrait — titled, “Ahh … the life of … Down Syndrum Sister.”

It depicts the four of us, lined up on a ski slope (Annabelle and Ray had gone recently for the first time). In the drawing, Annabelle’s saying, “Wow! Steep!” I’m giving her advice: “Keep it steady,” and Ray’s warning, “Be careful.” Sophie’s at the end, clearly about to fall, yelling, “Mom! Dad! Help! Help!”

Ray wasn’t so sure about the idea of a science fair project on Down syndrome and asked, “Will Sophie have to sit in the cafeteria for a week?”

Very funny.

But he played along, and even explained chromosomes to Annabelle. She titled her project “Up Down syndrome.”

For the model accompanying the project, Annabelle created a karyotype — a design of the 22 chromosomes of a person with Down syndrome (minus the 23rd, which determines sex).

She made the chromosomes out of wax-covered string. Then, came the report:

What is Down syndrome? You may ask. Well I will tell you. You see, if you have Down syndrome, you have one extra chromosome (which is a thread like looking thing that tells your body what you look like and other things) in your body. Which causes problems. See, I can’t really tell you why it causes problems. Because scientists have not figured it out yet. But I know that I can tell you lots of other things about Down syndrome! When you have Down syndrome you look a little different from every body else. And it takes a little longer to learn as well as you and me do. But even though they look different, it doesn’t mean that you can’t like the same things and be friends. I even know someone that has Down syndrome! And I know her really well because she is my sister! Her name is Sophie. I hardly notice Sophie even has Down syndrome. She knows lots of cool and elegant words like “I think not!” She really cracks me up! And Sophie has lots of friends in kindergarden! And all of her friends like her alot! Sophie has special therapies to help her up! She has a great life! the end

Of course, that was far from the end.

There were good days and bad. Sophie had challenges in the lunch room, and went rogue once or twice, but she also made a true friend, a girl she calls her BFF to this day.

There was the day that Sophie punctuated for the first time. Ms. Zamenski called to report that Sophie wrote, “I am at Gaga’s” (that's her grandmother) then paused and turned to the teacher.

“I’m excited!” she announced and drew an exclamation point at the end of the sentence.

“I put on an exciting mark!” she announced.

That’s what all the kindergarteners call it, Ms. Zamenski explained before I could protest.

And for a split second, Sophie was just like all the other kids.

Sophie’s sixth birthday fell on the last day of school. I knew what was going to happen — Ms. Zamenski had the same tradition every year — but I still wasn’t prepared. I snuck into the classroom, which was a disaster, with empty bulletin boards and half-filled boxes ready to pack up for the summer. This time, I had remembered my Kleenex.

First the class sang "Happy Birthday" to Sophie and to all the kids with summer birthdays. Then Ms. Zamenski settled into her rocking chair and read A. A. Milne’s poem “The End.”

"When I was One,
I had just begun.
When I was Two,
I was nearly new.
When I was Three,
I was hardly me.
When I was Four,
I was not much more.
When I was Five,
I was just alive.
But now I am Six,
I’m as clever as clever,
So I think I’ll be six now for ever and ever."

Each child was called to the front of the room, wearing his or her backpack, and asked to turn around, so Ms. Zamenski could place a folder with Important Papers like report cards and a summer reading list in the backpack.

Then the child turned back around and could choose a handshake, high five, or hug from Ms. Zamenski.

Almost every kid chose a hug.

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