Today we had Kay’s endocrinology appointment, and it was a really important one as we prepare for her first full year of school. Since she will be starting kindergarten soon, we had a lot to discuss and update in her Diabetes Management Plan.
One of the biggest things I wanted to talk about was how we can best keep Kay safe during the school day. Kay is only 5 years old, and she is not just navigating Type 1 diabetes. She also has Down syndrome, autism, and hearing loss in one ear. Because of all of these things together, she is not always able to recognize when something is wrong or communicate how she is feeling.
I asked her endocrinologist about adding CGM monitoring through the Follow app into Kay’s DMP so that her glucose data could be monitored while she is at school. Her concern was not that Kay’s safety does not matter, but that schools often have concerns about liability if they are actively monitoring CGM data and something happens. She explained that many schools are hesitant to take on that responsibility.
Instead, she suggested that we look into the possibility of Kay having a trained 1:1 aide who could learn the basics of her diabetes care, look at her CGM information, and know when to involve the nurse. She also pointed out that a 1:1 aide could help support Kay in other areas as well, including helping her stay focused, follow classroom routines, and navigate school with her developmental needs.
I actually think a 1:1 aide could be a great support for Kay, not just because of diabetes, but because Kay is a child with multiple needs who is entering a completely new environment. The challenge is that getting a dedicated aide is not always easy. Schools are often short staffed and resources are limited, so now the question becomes figuring out what support Kay needs and how we can make sure those needs are being met.
Her endocrinologist also recommended that I look into Safe at School resources to learn more about diabetes care in schools and what options may be available for families navigating similar situations.
Although we did not leave the appointment with the exact update I was hoping for in her DMP, I am grateful that we were able to have an honest conversation and talk through other options. My goal has never been to make things harder for the school. My goal is simply to make sure Kay has the support she needs to be safe, included, and successful while she is away from me.
This is a big transition for Kay and for our whole family. Kindergarten is exciting, but it also comes with a lot of new challenges. I will continue advocating for her and making sure the people caring for her understand what she needs.