My son James attended five different schools between preschool and third grade. There are various reasons for this, most of them very mundane but some related to finding appropriate care for James’ type 1 diabetes.
Of the various school interactions, most were extremely positive. One interaction was rather long and drawn out and not very positive. This was a mid-year transfer when our family moved. The staff at the school we were transferring from were warm, open, and helpful. They were responsive to my requests and kind to James, and I considered them my friends. When I walked through the office at the new school, I came with the expectation that our experience would be much the same. Unfortunately, it wasn’t. And that was apparent from our very first introduction.
It should not have been a big deal. It was a case of meeting the district nurse and the school health tech and bringing in boxes of diabetes supplies, as James was to start class early the next week. I very casually provided my copy of James’ health plan and 504 plan, and that’s when things got tricky. The nursing staff expressed concern almost immediately about most of the elements of how we handled diabetes at our old school. I’ve documented parts of this story extensively before, but today I want to talk about how I handled it and how I felt.
Blindsided. I felt blindsided to run into so much pushback after having such a positive experience previously. I probably should have known better, having had a number of small hiccups along the way during the transfer process. But see, I had a lot of confidence at this point. I had a 504 plan! They had to follow it, right? I’m sure that my confidence — maybe even overconfidence — played into how emotionally I took the rejection of our care plan by the school. But although my surprise at dealing with what I thought would be such a routine interaction played into my emotions that day, another huge part was that I was scared. I was scared that James wouldn’t be cared for properly, that he wouldn’t be safe at school. And I was frustrated that I couldn’t do a thing about it.
The school was not mean. But they were firm. They refused to follow the testing and treatment plan that we were accustomed to at our old school. They were committed to doing things the way they had done them for years, maybe decades — despite my worries, despite my 504 plan, despite my assurance that our way was best for James and worked fine, because after all, it had worked just last week at our old school. There was nothing I could say or do at that moment to get them to do what I felt deep in my bones that they needed to do. I started to cry.
I left in tears. When I have better control of myself, I can be calm, firm, and unyielding. That day I was just a teary-eyed mess. At my best I consider myself educated, confident, determined, and supported by my immediate and extended family. I can advocate for my child! But I also love him with my whole heart, and raw emotions apparently turn me into a puddle.
Little did I know that would be the start of a nearly five-month struggle to get James the accommodations that I felt he needed to be safe. After many meetings, letters, calls with lawyers, help from family and friends, tons of determination, and — yes — many tears (some very public), we finally prevailed.
I’d finally found victory with just a month of the school year remaining. And thankfully, James would be enrolled at school number five the next fall, a school that turned out to be amazing for the remainder of his elementary and middle school education. In fact, as James is now in his last years of high school, I can say that our struggle that one year in early elementary school would turn out to be the last of our major school headaches — at least regarding his diabetes care!
While I sometimes wish I didn’t burst into tears for James — because who likes to be so raw and exposed? — I know that this is just part of being a human who cares for a child very much. I’m grateful that this part of the process is mostly behind me. I’m glad my tears are dry. But even if I can observe that crying might not be the best strategy for dealing with schools, I don’t begrudge myself those moments of weakness. As parents of kids with type 1, we advocate so deeply and fully for our kids. We wring out every ounce of virtue, wisdom, and effort. When we reach the very bottom of our reserves, sometimes there are only tears left. There is no shame in trying that hard or loving your child that much!
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.