This is a story about type 1 diabetes accommodations at school. It is also a love letter to everyday heroes.
Here’s the background: One day in middle school, James’ continuous glucose monitor (CGM) was telling him in no uncertain terms that his blood sugar was low. He also knew that he was completely out of things to treat his low blood sugar (he generally keeps some fast sugar like juice boxes, glucose tabs, or candy on his person and in his backpack). But he was sitting in a lecture that he knew was important — and understood that the teacher certainly thought so too. And so he refrained from saying anything. Until simultaneously both the school nurse and I (who are able to watch his numbers remotely) saw that he was going low quickly and he needed to consume sugar immediately.
Thankfully both she and I sprang to action. And the nurse was quicker. By the time I called her to let her know that James needed to treat his low blood sugar, he was already in the office doing just that. (Note here: This could be a love letter to the nurse, except for the fact that she’s already received her love letter here.) So, crisis averted.
Now, why did James just sit there when he knew his blood sugar was low? Because he was told by the teacher not to interrupt during her presentation. That she was talking about something very important, she needed the class’s full attention, and they would want to take notes on it. As James put it: He didn’t want to be rude.
While I like that characteristic in James a lot, diabetes sometimes calls for an entirely different action. He needs to be able to advocate for his immediate need to go and get sugar. In this case, everything worked out fine since the nurse was so incredibly responsive. However, this will not always be the case in his life!
And so it was that when we were hammering out a new 504 plan for high school this year, we were trying to anticipate all of the potential issues that might arise. Our plan for high school was very different from what we had planned in 8th grade. Remember that the nurse in 8th grade had been caring for James for the past six years, from the time before he could test his own sugar and well before we had a CGM to rely upon! While her duties had been much reduced in the years since 3rd grade, she was still very responsible for his care.
Moving to a large high school, we didn’t think the same level of monitoring was possible, nor was it really necessary. James is largely handling things on his own or with gentle reminders from his mom. And so, our provisions in the 504 plan we worked out are really quite small and simple. They refer mostly to things he is allowed to do: test blood sugar in class, treat low blood sugar with candy and juice, use the restroom whenever needed, go to the office without a hall pass, keep his cell phone in class, etc.
As I sat there racking my brain to make sure his 504 plan anticipated all potential issues, I remembered that middle school incident. I mentioned it to the group. His counselor, without missing a beat, looked at him and said, “James, you have my permission to be rude. When you are low, you need to come to the office and take care of it.”
And at that moment I loved her.
James is a rule-following kid. He is a polite kid. These are good things! They also sometimes get in the way of his ability to care for himself. In order to avoid a potential conflict, the counselor gave him an alternate figure of authority to follow. He could leave the classroom, he could go to the office, he could essentially defy a teacher’s polite request (or command) because the counselor had given him an edict that he also must follow.
Thank you, counselor. Thank you for understanding my son’s psyche enough to know he needed to hear that from you. Thank you for understanding the severity of this disease and how, while its needs typically fall within the bounds of politeness, every so often it demands attention at the expense of other requests. Thank you for truly being James’ advocate. It is so heartening to encounter school personnel who make the effort to understand and to help our kids. Thank you, counselor, for being so good at your job and for taking care of my boy.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.