The Mighty Logo

The One Phenomenal Moment for My Daughter With Down Syndrome This Freshman Year

The most helpful emails in health
Browse our free newsletters

The dust is settling around my daughter Sophie’s freshman year of high school.

It was one of the messiest yet. And also pretty awesome. Sometimes in life, all it takes is one phenomenal moment to make you feel like you’re doing the right thing.

I spent much of this last year looking for that phenomenal moment, the sign that Sophie was in the right place, at the right school, on the right track. There is no obvious path; not for Sophie. Even in our home state of Arizona, where leaders brag there are more school choice options than anywhere else, there is no school designed for her — few that welcome a kid like her. So we are figuring it out as we go along.

When you’re blazing your own trail, it’s easy to get lost. I don’t mind wandering a bit, even stumbling, as long as it’s my knees that are getting skinned.

But Sophie’s got enough challenges, navigating the world through the lens of Down syndrome.

I was reminded during Sophie’s freshman year that public school in this country for a kid with significant learning issues is death by a thousand paper cuts — a tangle of bureaucratic forms, lists and goals designed to ensure safety and success that too often results in distraction, confusion and excuse making.

The truth is that any meaningful education, anywhere, is about the people, not the paperwork.

That’s what I’ve learned, anyway.

The pre-school teacher who still keeps in touch, more than a dozen years later. The school bus driver who showed up on our doorstep with a get well gift (a stuffed Winnie the Pooh, I’ll never forget that) when Sophie had open-heart surgery. The seventh grade English teacher who made it her mission to fully include my kid in class and see her succeed, right down to her “Are You There God It’s Me Margaret” multi media book report. The drama teacher who treated Sophie like every other kid in that general ed class — and made sure the students did, too. The aide who made mainstreaming — and meaningful learning — possible for Sophie.

Those experiences, and those people, were hard won, all in the rear view mirror that first day of high school as I dropped her off, Taylor Swift (Sophie’s pick) blaring on the car stereo:

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

I spent a lot of time worrying this year that the opposite was happening: that Sophie was in everyone’s way. I braced for every phone call, email, meeting, cringing and lecturing myself that this kid deserves a fair shake, a chance to learn, socialize, perform, grow up.

As we rounded the bend from the first semester of freshman year to the second, I was increasingly disheartened. I had not found our people, not really. Sophie’s English teacher made it clear she didn’t want her in class. I fought with her case manager over unanswered emails. Sophie hadn’t made the cheer line or the school musical, and although she was the shortest kid in her choir class, somehow she kept getting placed in the second or third row, completely out of sight during performances. She hadn’t made any real friends. A girl promised to take her to a dance, but backed out at the last minute.

We switched English teachers and case managers and I tried to keep the rest in perspective. Not everyone makes the cheer line. Not everyone can sing. Sophie seemed relatively happy with her largely imaginary friends.

Anyhow, everyone’s miserable in high school, right? I don’t love that storyline, particularly not for Sophie. Life is too short, especially when early onset Alzheimer’s is practically a given and life expectancy is better than it was but still not as good as it is for your peers.

Screw that. I needed my sign, a sign that high school was going to at least be OK for Sophie.

I got it. Toward the end of the second semester, Sophie’s dance class participated in a school-wide show. It was intense — several nights of three-hour rehearsals, baskets (literally) of costumes, cues and moves learned over the course of the entire year.

I snuck into the auditorium during a dress rehearsal, prepared to not see Sophie at all, figuring that as with choir, she would be pushed to the back of a giant group — hidden. Turns out, she was anything but. The very last number in the very long show featured the beginning dance class, a large group performing to Sinatra’s “Luck Be a Lady.”

There was Sophie, quite literally front and center. She was a half beat behind everyone else, like she always is, but what she lacked in precision she made up with flair honed during a decade of dance classes. She was part of the pack, and totally visible in it; she was performing to the best of her abilities, and very much holding her own. In that dance, I saw everything Sophie has worked for all these years, everything I’ve hoped for since her first day of pre-school.

It was magic.

And, of course, it was anything but. As always, it was about a person, a dance teacher who nurtured and celebrated my kid all year, who quietly made modifications when Sophie needed them, and who let her shine on stage without making a big deal out of it.

In the end, Sophie barely passed math, aced history, and did OK in English. She looked forward to school every single day, even though halfway through the year she told me she doesn’t want to go to college anymore; too much homework. There’s time to change her mind, and so much for her to learn and do over the next three (maybe more) years.

It won’t be easy. But she’s signed up for dance.

Getty image by msymons

Originally published: June 13, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home