Interview with Cindy Kolbe, Author of “Struggling with Serendipity”

I met Cindy Kolbe, author of the book and blog Struggling with Serendipity  a few months ago at a United Spinal DC chapter meeting. Cindy shared her story of being the driver in a car that was in a serious accident that led to her daughter Beth’s spinal cord injury and her own struggle with depression. I recently finished reading Cindy’s book, which I found illustrative of the challenges she and her daughter faced in grappling with their new reality. The book also demonstrated the ways in which they both become advocates for Beth’s needs in high school and at Harvard, where Beth went to college. I was particularly drawn to the content that focused on Beth’s transition to college and the process that family went through to determine how best to support Beth in her transition, from determining accommodations in college, grappling with the need for a personal care attendant, and navigating Harvard’s campus in a wheelchair. I had the opportunity to interview Cindy to gain more insight into college transition. I found Cindy’s responses incredibly insightful and hopefully helpful to other families who are in the midst of the college selection and transition process for a student with a mobility impairment. 

Most parents have concerns about their child transitioning to college. Given that Beth is a wheelchair user, how do you think your concerns were similar and how do you think your concerns were different? 

When my daughter, Beth, was fourteen years old, she completely lost her independence with a C6-7 spinal cord injury. She worked hard to re-learn how to do everything from feeding and dressing herself to getting through a school day. As Beth prepared to go to college at Harvard, she wasn’t completely independent in her self-care, but she also didn’t want a personal care assistant in college. So on top of the typical transition concerns, I worried about her taking on too much, especially since she planned to volunteer every week with kids with disabilities and to continue her swim training as a member of the US Paralympic National Team, on top of college classes, homework, and other activities. 

“Simple” tasks like changing clothes took extra time for Beth since her hand function was limited. Her disability also put her at a higher risk for health issues like pneumonia. I also worried about access challenges for a manual wheelchair on the old, historic campus and the cobblestone sidewalks in the city. I worried about everything, particularly since Beth avoided asking for help.

You moved to be close to Beth in case she needed you during her first year on campus. What was the conversation and process like around making that decision? 

Before Beth’s senior year of high school in Ohio, she thought that I would help her at college, and maybe share a dorm room, since she wasn’t completely independent in her self-care. When Beth was accepted at Harvard in the fall of her senior year, she asked me if I could stay off-campus for transition support while she lived in a freshman dorm, though she also wondered if she really would need any help. 

Later in her senior year, Beth experienced a serious infection from a bladder tear, and I spent a scary week in intensive care with her. She had never been so sick before and was closely monitored for sepsis, one of the leading causes of death for quadriplegics. After that hospital stay, there was no question. We both wholeheartedly agreed that I needed to be near Harvard for her freshman year, for peace of mind if nothing else. Beth would live in a freshman dorm while I would live off-campus. 

When we arrived in Cambridge, she depended on me to set up her dorm room, carry textbooks from the bookstore, and buy things for her at the store. I never asked for a key to her dorm, and she never offered one, so she would meet me at the main entrance to let me in. I know she was glad that I was nearby.

Beth insisted on taking the extra time to do all of her self-care by herself. She also pushed herself to be even more independent; that included doing her own laundry for the first time, even though she felt swamped as a new freshman. I really wanted to do her laundry to give her more time for other things. Instead, she dragged a mesh bag of dirty clothes down the hall to the elevator with laundry soap and a bag of quarters on her lap. The high dryers were out of reach, so when the low dryers were full, she had to wait. Nothing was easy.

Even so, Beth needed me less and less as the year progressed. By spring, we talked on the phone about every other day and met once a week to go out for lunch in Harvard Square. After lunch, we shopped for whatever she needed, and I often bought a few sunflowers (her favorite flower) for a vase on her desk. Even though we agreed that I didn’t need to live near Harvard for her next three years of college, it was still difficult for me to be in Ohio when she was at a college so far away. 

In the book you talk about the jobs you took on while living in Cambridge. Two of those jobs were related to university disability support services – one as a scribe for a student with cerebral palsy and the other as a part time Personal Care Attendant for a student with a physical disability. Given your experience with Beth and while working with these students, what are some things you wish you would have known about the college accommodations process and the process of transitioning to college?

I wish we had kept Beth’s high school accommodations for college, ones like extra time for tests, even though she didn’t use it. As a result, when she ran into inevitable physical challenges, like lab equipment she couldn’t manipulate, she didn’t have any accommodations in place and didn’t want the hassle of initiating them. 

Avoid the impulse to drop accommodations that are no longer being used. For example, my daughter discovered years later in law school that entire tests required long essay answers, and her typing is slower than her peers. Keep in mind that things change.

Also, I wish I had anticipated new challenges from the new environment. In Ohio, Beth wheeled through snow for only short distances, to and from the car to a building. Because of that, I didn’t realize that wheeling outdoors often in a manual wheelchair through snowy New England winters would be a big problem. Beth didn’t either. Her first December at Harvard, she ended up in the health center with mild frostbite in her hands, despite wearing wheelchair gloves. Unfortunately, it was not an easy problem to solve, short of using a power chair instead of a manual one, which she wouldn’t do. I bought different kinds of gloves, but the best ones that protected her hands couldn’t push the wheels. After her frostbite experience, she did take the cold more seriously and used college transportation more often in the winter. A few times, when the snow was too high to push through, she allowed a friend to push her wheelchair.

What tips do you have for other parents who have students with physical disabilities who are transitioning to college? 

Encourage your son or daughter to take the lead with college plans, and to advocate for themselves whenever possible. Start planning early and start a self-care routine that will work best with a college schedule. 

Meet with the director of the college’s disability services and bring documentation on current accommodations. Unfortunately, not all directors are helpful, but you still need to know exactly what the college offers. If they don’t mention something you need, ask for it. Most offices will help find caregivers, and some will offer room and board to a graduate student in exchange for caregiving.

Find needed services near the college; for example, locate a repair service for wheelchairs. We discovered the hard way that a good bike shop can be better than other repair services. For my peace of mind, I set up the speed dials on Beth’s phone with important numbers, including mine, her local doctor, and the student health center. Later, she added the phone number of the college’s maintenance director when the one elevator in her freshman dorm broke down. This also necessitated teaching others to carry her down a flight of steps safely so she wouldn’t miss a swim practice or a class.

Even when it is physically possible to do most or “all the things,” I think students with a physical disability need to be reminded that many able-bodied college freshmen are vulnerable during this big transition and often need support. There’s no shame in asking for and getting help on any level. I think it’s better to err on the side of many supports (which can easily be put on hold) rather than not enough. I hope the college transition for you and your son or daughter is a smooth one! 

My favorite quote by Elizabeth Berg says it all. “There is love in holding, and there is love in letting go.”

Many thanks to Cindy Kolbe for allowing me to interview her.

You can sign up for Cindy’s mailing list, read her blog, and buy her book at her website: http://www.strugglingwithserendipity.com