Dare I dream of a typical college experience for my atypical teenage daughter?
Duke. Harvard. Colgate. Oxford. Cornell.
There doesn’t seem to be much rhyme or reason to street names in metropolitan Phoenix. We name them after presidents (Van Buren), places we’d rather be (La Jolla) and desert plants. I spent most of my childhood on Palo Verde Drive.
South of Baseline Road in Tempe, there’s a short stretch where all the streets are named after elite universities. I know this because for years I drove past them almost every day on my way to drop my daughter off at preschool.
I’d turn right on West Cornell Drive and into the school driveway, where I’d unbuckle Sophie’s car seat and set her down carefully in tiny, wobbly pink Converse sneakers that left room for the supportive braces on her feet. Most days, once she had her footing, she’d run full speed to the classroom and her beloved teacher, Ms. Janice.
Sophie loved Getz School. So did I. We found it after I called the owner of a fancy hippie preschool in South Phoenix and was informed that her school wasn’t interested in kids with Down syndrome. At that precise moment, I realized it wasn’t going to be easy to get Sophie educated. But for the first two years, we lucked out – run by Tempe Elementary School District, Getz is an amazing preschool that fully integrates kids with intellectual and developmental disabilities alongside their typical peers.
We’d cleared the first education hurdle – all that was left was K-12. At that point, I had no idea what was ahead for Sophie – but I knew what wasn’t: college. Duke. Harvard. Colgate. Oxford. Cornell. Each sign stung a little, every time I drove by.
I mean, look, I get that no toddler is necessarily destined for Harvard. I certainly wasn’t, and neither was my husband nor, as it turned out, was Sophie’s big sister. Or just about anyone I know, for that matter.
But most of us are born with at least the chance to dream big.
Not Sophie. On social media and in brochures raising money for advocacy organizations, there’s all kinds of talk about how a person with a disability can do anything anyone else can! Nothing can stop them!
I’m the kind of dyed-in-the-wool contrarian who can’t help but stop to ponder such a statement and make a list to disprove it. Like, I was willing to bet that Sophie would never fly a jumbo jet. Or spatchcock a chicken.
Or perform brain surgery.
Or go to college.
In 2008, no one was talking about people with intellectual disabilities attending college. At least, no one I knew was. And if they had been, I wouldn’t have listened. I didn’t want to talk about Sophie’s future beyond the next day or two, or – if pressed – the next year.
Kindergarten loomed, and I was obsessed, determined to get Sophie to the same neighborhood elementary school her sister already attended.
All the parents of older people with Down syndrome laughed at me, not unkindly. “Kindergarten is the easiest part,” they said. “Just wait till she graduates from high school.”
Fifteen years later, I feel that deeply. I’m not here to tell you that Sophie’s K-12 experience was perfect. It was messy from beginning to end, and my goal was to keep that messiness from blocking Sophie’s path. I’m not sure I was wholly successful, but I will say that she’s just about the only person I know who truly misses high school. I get it. She spent years building a community. It wasn’t easy, and sometimes it was painful to watch (just about every high school student gets socially snubbed, and this was next-level), but it was worth it.
At the end, Sophie knew everyone on campus by name. She’d been cast in two musicals, danced and sang in senior solo concerts and graduated with a real diploma.
And then – nothing. The secret no one tells you is that you can fight and scrape and beg to get your kid with Down syndrome an OK education, but once they’re done with high school, pretty much everyone is done with them.
Sophie is a poised, beautiful young woman, but she’s not the cute, cuddly sprite in a “She’s Tiny But She’s Mighty” T-shirt who once attracted oohs and ahhs wherever we went. She’s an adult, and she wants what a lot of adults want. She wants to go to college.
In the years since I drove Sophie past Duke, Harvard and Oxford, a whole cottage industry has sprung up with the goal of creating college experiences for people with intellectual and developmental disabilities. There are programs all over the country.
I’ve looked at a lot of them. Some look really good, some look horrible. Some just aren’t the right fit for Sophie. We traveled to Tucson to look at two programs at the University of Arizona. One was too hard, designed for a student with a learning difference who needs just a little extra help with homework. The other was remedial – the students aren’t really enrolled at UA; they are lab rats for education students. They do get internships on campus to help them prepare for employment, which sounded promising until we visited.
“I want to study dance,” Sophie told the internship director as we stood watching a student in the program wipe down tables at a café on campus.
The woman looked annoyed, then muttered something about Sophie getting a chance to take tickets at the box office during dance concerts. If she was lucky.
Turns out, Sophie got much luckier. A dance teacher at a local community college invited Sophie to join her program. Sophie’s now in her second semester – she’s studied tap, ballet and the history of dance, and is currently learning about Broadway musicals.
It’s not perfect.
Making friends isn’t easy. Last Halloween, Sophie announced she wanted to go as “a real college student who gets invited to parties.”
That was brutal.
Without help in the classroom, Sophie can’t take most of the courses she needs for her dance major. The disability resource office told us the only way to get assistance was to get the professor to ask the class on the first day of school if anyone wanted to volunteer to be Sophie’s notetaker.
That reminded me of the day the principal at the neighborhood elementary school told me that if Sophie couldn’t act like a typical kid, we’d have to find her a place at another school.
We made that work. (For the record, Sophie did not leave the school, though luckily that principal did.) And we’ll make this work, too.
But there’s one challenge that’s got me stumped. Sophie doesn’t just want to go to community college. She’s not asking for Harvard, but she does have her sights set on another university that happens to be located two blocks from our house.
Despite being one of the largest universities in the country and constantly self-proclaimed as the most innovative, Arizona State University has nothing for Sophie. This surprises me, if only because programs for people with intellectual disabilities can be very lucrative.
I’ve never been particularly warm and fuzzy, but in the last few months I’ve become intolerable – lecturing ASU brass at parties, nagging the president of the Arizona Board of Regents, doing anything I can think of to get these people interested in starting a program for people like Sophie.
The funny thing is, Sophie has attended school at ASU. She was 4. After a morning at Getz, the school bus would drop her off at the Child Development Lab for the afternoon. The teachers were wonderful, even though they’d never had a student with Down syndrome.
One day I was walking up the path to CDL to get Sophie and stopped short. The sea of college students on Forest Mall parted to reveal a familiar face, a woman who looked just like Sophie. She had Down syndrome.
Instead of walking to class with a backpack, she had a poker and a bag. She was picking up trash.
