“I would start tomorrow if I could,” Penny said, after our visit to Clemson University. (You can watch a short highlight clip of why she loved Clemson here!) The ClemsonLIFE program is designed for students with intellectual disabilities to live on campus, take classes, work and develop a career path, and engage fully and meaningfully in the social life of the school. Penny has wanted to go there since she first heard about it. But it took a lot of convincing for me to be willing to visit.
Let me explain why I didn’t want to go. First, South Carolina is not close to Connecticut. Arranging flights and a rental car and a hotel just felt like a lot. Second, the program is really competitive and there is no guarantee Penny would get in even if she wanted to go. Third, she’s involved in a perfectly good program here at home. And finally—and perhaps most to the point—I couldn’t really imagine a world in which our daughter with Down syndrome goes to college fifteen hours away from home, lives in a dorm with friends, develops a social life and activities completely independent of us, and then potentially lives far away for the foreseeable future. And let’s be honest—I couldn’t imagine a world in which Penny’s typical peers became true friends to her. I didn’t want her to get her hopes up for an impossibility. And maybe I also didn’t want it to be possible.
But then, last summer at Hope Heals camp, two things happened. One, I met a man with a sister with an intellectual disability in her forties who had lived with their parents her whole life. When they died, she moved in with him, but eventually she moved into a group home. Once she got to the group home, he saw a whole different side of her. She talked more than ever before. She expressed her own preferences. She formed friendships. She pursued activities. He exhorted me not to assume that Penny would live at home with us forever. The other thing that happened at Hope Heals Camp is that I saw the way other people valued Penny’s presence. I realized that there were typically-developing peers who wanted to spend time with Penny. I started to wonder if all my theoretical talk about mutually beneficial relationships across social lines that usually divide us could be real. I began to imagine Penny living with friends throughout her adult years, even, potentially, far away from home.
Still, by far away, I meant a few hours. I meant the Northeast. And I meant in a small, controlled community. How could she ever be safe on a college campus with tens of thousands of people? How could she learn the skills needed to share an apartment with peers? How could she navigate airports and walking around campus and unlimited amounts of food in the dining hall? How could I ever feel okay about letting her go?
But if I’ve learned anything in these past twenty years, it is that in this life of both limitations and possibilities, I do not want to be driven by fear. So we signed up for the ClemsonLIFE Open House, even though I couldn’t imagine the trip being worthwhile.
The auditorium at Tillman Hall on Clemson’s campus was packed with hundreds of families like ours, families whose kids were born when programs like these barely existed. I got choked up multiple times during the presentation, both with the overwhelming sense that this really might be possible, and from the beauty of a place where people like our daughter are celebrated and loved, believed in and valued.
They anticipated all my fears. For example, first-year students are accompanied everywhere for the first six weeks on campus, to ensure their safety and comfort as they learn to navigate the area. After that, they gradually gain the freedom of typical college students to walk around on their own, even late at night.
They also anticipated my desires for Penny. They’ve built a program with everything we’ve tried—and often failed—to provide Penny at home. There are daily opportunities for exercise alongside friends. There’s meal coaching, cooking class, nutrition class. There’s apartment living—two years with a residential advisor living in the same apartment, and then two years of living with friends.
And there’s the social life. Sporting events, Greek life, opportunities to manage teams, participate in clubs, and even join a Bible study and campus fellowship group. This past year has been a great one for Penny socially, but her time with peers is more or less limited to the six hours she spends on campus each day. Instagram and The Summer I Turned Pretty are her favorite companions for the afternoon. How much more would she thrive if those hours were instead filled with friends to talk to, work alongside, and enjoy in the afternoons and evenings?
I could go on, but the point is I have allowed my imagination to be shaped by fear and good intentions that would keep her close by. I could also let it be shaped by the possibility of friendship and flourishing that would take her far away from home.
Penny has real limits on her life that she reckons with daily and will continue to live within. My vision of what is possible doesn’t need to be one of those limits.
And so, she will apply to Clemson. She may not get in—it’s a competitive program, with 150 applicants for 12 spots. But she will have our support in taking steps toward a future that includes all sorts of things I never dreamed possible.
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