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For Families Like Ours, Touring Colleges Can Be Stressful. Fortunately, There Is a Better Way

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My family doesn’t travel light. In fact, we are the people you see in the airport and think, “Please don’t sit next to me.” It’s not even the dogs who join us that get all the attention. It’s the needles. We are parents to three amazing children, two of whom have type 1 diabetes and are considered brittle diabetics. My son was diagnosed at 3 and my youngest daughter at 5, and it has been a wild ride ever since.

Other health issues have compounded certain aspects of their care, and for many families like ours hopping on a plane or going anywhere for that matter isn’t always so simple. Schedules are tough to stay on when you have massive sugar fluctuations from multiple people at any given time, and between that and my husband’s Crohn’s disease, we have learned that planning in advance doesn’t really work for us like other people because our situation changes hour to hour.

We also need to bring tons of supplies with us. Everything from needles, long-acting insulin, and short-acting insulin, to alcohol wipes, ketone strips, lancets, glucose meters, test strips, emergency glucose agents, pen needles, extra continuous glucose monitors, overlay patches, lots of juice, and easy-to-access snacks. Oh, and lest we forget all the unopened medicines that need to be stored at a cold temperature throughout the entire process.

A week and a half ago we were at a crowded airport, and I asked a woman if she could move her bag so I could sit near my daughter. She told me that there are other solo seats on the other end of the terminal, suggesting her carry-on luggage belonged next to my daughter more than I did. Needless to say, I couldn’t just walk away. So, I stood there and within minutes needed to give my daughter insulin. The second the diabetes supply bag opened for me to retrieve a pen needle, I was met with a dirty look and grumbling under her breath. She stormed away angrily, and I proceeded to ignore her and enjoy my newfound seat. I’m used to how people react to us. In fact, it was always amusing to see people’s reactions on the playground when I would shout to one of my kids in the sandbox and say something along the lines of “Do you feel high” referring to their blood sugar level. (I need to keep a sense of humor, after all).

While we certainly don’t want to ever let our children’s medical issues limit them in any way, the reality is, for many families who have medical and or physical challenges, it is hard for them not to impact every decision, including the ability to travel. In fact, a dear friend of mine whose child is in a wheelchair has missed many a much-needed vacation because traveling would be just too much work, and when it came time for her eldest to pick a college, it was no surprise that they didn’t even look at a school in another state. Clearly, this isn’t an isolated incident, and as I now have middle school and high school-aged children, I wondered if there could be a better way. Not for us adults, but for our kids. How can our kids get access to meaningful information about higher education when travel isn’t always feasible? How can we assure that they can make smart decisions, within the confines of extenuating circumstances?

By a twist of fate, I was literally able to answer my own questions when I was hired to work on the Amazon Prime TV show “The College Tour.” Each episode of the show travels to a different college campus, telling its story through the unique lens of its students. While the show serves as a wonderful resource for people who otherwise couldn’t afford to travel across the country, I quickly realized that it was also the breakthrough that we needed in the chronic illness community.

All episodes are available for free on the website, along with a supplemental curriculum called The TCT Class, which helps parents and teens identify what to look for in their college experience all from the comfort of their own home. We have also featured many students with various abilities and challenges, and my hope is that when teens see that on-screen, they can not only conceptualize themselves being on campus but also have the confidence to achieve success.

The feedback I have gotten has been quite emotional, as I know exactly what this means on so many levels. I have spent my parenthood in and out of 504 and IEP meetings, getting to know so many parents who are doing whatever it takes just to make sure their child is afforded the same opportunities and experiences as anyone else.

Being a part of something this monumental is beyond rewarding. Even on the tired days, when I have been up all night trying to keep sugars stable, I am motivated to push forward and work my hardest, as I consider this my contribution to an incredibly supportive community that deserves to have even just one thing in their lives be a lot easier.

Getty image by Ryan Herron.

Originally published: December 6, 2022
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