Why We Stopped Paying Tuition for Our Son With T1D

My son was diagnosed with Type 1 diabetes in 2003, when he was six years old. We were told that a cure was “right around the corner—like, five years out.” Believing this, we faithfully attended all the walks and conventions in our area. Well, needless to say, we are still waiting on said cure, but we did receive a lot of advice about parenting a child with the condition. I will never forget the advice given by one child psychologist at a JDRF conference: don’t treat diabetes any differently when it comes to behavior management. If your child lies to you about something, you punish him, right? Well, lying about bolusing or food is no different.

This advice is pretty common, according to what I’ve heard from other parents in the same situation. It is natural for parents to feel sorry for their child who is living with a chronic condition. But this chronic condition doesn’t mean they are “off the hook.” They need to be held accountable for their actions.

Over the years, we tried our best to follow this advice. When he was young, I would find candy wrappers under his bed. So, I would take away a privilege like television or video games. When he grew older and would spend the night at friends’ houses, I would tell him to take his insulin with him. Then I would find the pen in his room. I would drive it over to his friend’s and discreetly remind him to inject before bed. But when he came home the next morning, his blood would be around 500. He would say he “forgot.” So, no sleepovers for a month.

Read When a Teen Stops Treating his T1D

In high school, he was nearly hospitalized twice during a routine office visit. Both times, his endocrinologist lectured him and us about the importance of regular dosing and diet. Both times, my son promised that he would take better care of things.

Well, before we knew it, it was time for college. I worried about his ability to manage diabetes on his own. Every time I raised the topic, he told me, “Mom, I’m an adult now. You just have to trust me.”

He had a Dexcom when he moved in to his dorm. He did not want to wear a pump because “one device is enough.” The first few weeks were terrifying, as I followed the trends: up, down. Up, up, up, down, down, down. Sometimes, he would go offline for days. I would try not to contact him, but after a few days, I would cave. Then he would go back online. But one day he told me that he wasn’t going to wear it anymore because his roommates did not like the alarms going off at all hours of the day and night. I remember asking, “Can’t you just silence it at night?” But he didn’t want to deal with it. So, there was nothing to do but hope and pray. Hope and pray.

When he came home at Thanksgiving break, I knew that something wasn’t right. He looked like a watermelon; his face was very red and swollen. I asked him to please talk to me about it, and he said his blood sugar had been running a little high. I did not ask him how high. I just thought, Okay, at least he’s home for a week, and we can get things under control.

I tried not to panic. I made the most diabetic-friendly Thanksgiving dinner ever, and I encouraged him to drink water. Lots of water. When it was time for him to drive himself back to campus, I did peek at his meter just to make sure he was at a safe level to drive. The last reading was from two days ago, and it was 280. I was livid that he hadn’t checked in 48 hours, but I did not want to cause more stress before his trip. (God forbid he spike even higher!)

Well, he made it back to school okay, and the next week seemed pretty uneventful. (Now I know it was the calm before the storm.) A phone call from the local hospital. What do you mean his blood sugar is 750? He had gotten so ill that his roommates thought he had contracted a serious virus. They demanded that he go to the hospital because they all wanted to know what they had been exposed to. Were they worried about him at all? I don’t think so.

Nope. No virus. Just a 17-year old who hadn’t taken insulin in two days.

Once he was back in range, we brought him home with us, and he made arrangements to complete his final exams after Christmas break. We all sat down and had a long talk. Several of them, in fact. About regular bolusing. About DKA. About being a mature adult. Once again, he talked a good talk.

Fast forward to March. Same call, same hospital. This time, it took nearly a week to bring his levels back to normal. (When he was diagnosed, it only took three days.) There was no way we were just going to go home and wait for the next round. We packed his clothes and essentials, and he came home with us to decide on a plan.

Read DKA Claimed Our Son During His First Year in College

After a lot of deliberation (more like arguing), my spouse and I decided that we would not pay for college until he could prove that he was capable of caring for himself. We entertained the idea of making him reimburse us for that semester, since it was too late to get the tuition back. But we decided against this so that he could focus on his diabetes. We made appointments for him to see different experts, such as a nutrition coach and a diabetes psychologist. Miraculously, he did not put up a fight! Over the next six months, things very gradually got better. Maybe he experienced a real wake-up call.

The following fall, he went back to school. He still did not want to wear his Dexcom. It hasn’t been a totally smooth ride, but it has been smoother than the first one. I don’t regret our decision because I know that it may have saved his life. Do I question my diabetes parenting while he grew up? Of course. Were we too strict? Not strict enough? Should we have seen the specialists sooner? What could we have done to avoid this phase of total neglect? Then again, I know that even if we did everything right, it was never guaranteed to be easy. Until there is a cure, diabetes will continue to be a huge strain on individuals and families. I hope that the cure really is “five years out.”

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Amy Kline is a pseudonym for the author, who is the mother of two boys, one of whom is living with Type 1 diabetes. She lives in Texas.

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