As a child I remember being mortified by my mother. She always got what she wanted, and as her daughter, I remember how embarrassing it would be when she would (loudly) assert her opinion at school. Of course, I was the beneficiary of her strong will on more occasions than I can count. Understanding my mother and my reluctance to become like her helps to explain why dealing strongly and confidently with schools came a little slowly to me. James has been to three different public schools despite the fact that he is only just starting third grade and that he had been homeschooled for two years. I'm finally understanding why my mother took the approach that she did all those years ago -- it works! Now let me share with you a few things I've picked up in my numerous associations with public schools.
Most people at school want to be helpful. I've met nurses, administrators and especially teachers over the years that want to understand diabetes and how to help your child. They want to learn. They check out books from the library, and when they plan their day, they think about how they can help your child. This is important to remember because if they aren't well versed in the life of a child with type 1, they will make mistakes. These errors are unintentional and mostly very well meaning. A classic misunderstanding is to bring carrots to school for the child with type 1 diabetes when all the other kids get cupcakes. They meant well, they just didn't get it yet. Be gentle! They're trying.
Some people at school are resistant to change. Either they don't understand diabetes, or they just don't want to change how they do their jobs. We've run into teachers, nurses and administrators that fall into this camp too. I've found the best thing to do with them is to be persistent. I always try to be polite with them, but I am matter-of-fact and expect my child's 504 Plan to be followed with exactness. Doing this should not be upsetting to them since I am just looking out for the best interest of my child.
Some schools aren't familiar with the laws. Unless they have had prior experience with a child with type 1, they may violate a number of federal laws. You might be the one that needs to teach them about the laws, and it might not be easy. You can contact the American Diabetes Association if you run into trouble. They are experts and can help you at no cost. Changing school policy is not fun, but it is worth it for you, your child and the kids with diabetes that follow in that district.
Schools will generally let you do as much diabetes management yourself as you would like. Think hard about how much you would like to do over the long haul. I've found that it's easier to get a school to drop a diabetes management task than to start a new one mid-year. This is tricky when children are first diagnosed. It's normal to want to personally oversee blood sugar monitoring or insulin administration. Sometimes this is the right choice. Don't do it just so that you won't "bother anyone" though. If your child attends a public school, it is the responsibility of the school to care for your child. Doing so is usually not difficult for the school, but it is a new thing and they may resist it. It's worth being persistent at the start of the process versus revisiting the process mid-year and insisting on the school's participation then.
It's best to be nice but firm. I'll never forget when we finalized James' 504 Plan after a particularly difficult negotiation at one school. Later that week, I got a text message from the nurse requesting permission to vary from what was outlined. I replied politely that the 504 Plan must be followed. I felt a little bad since the nurse had asked nicely, but I knew that we were setting a precedent, and I needed the school to recognize the authority of his 504 Plan.
I've become much more assertive as my child has progressed through elementary school, becoming more like my own mother than I had ever expected. I have to say, though, that she knew what she was doing. Firmness and consistency seem to be appreciated by the school staff. They know what I expect from them, and they know what to expect from me, so we'll have a great year!
About the author: My name is Jennifer, and I live in Southern California with my husband, Craig, and our three boys. Our oldest son James has been diagnosed with type 1 diabetes. I’m thankful for this opportunity -- along with my sister-in-law Kim and her daughter Kaitlyn, who also has type 1 diabetes -- to share our struggles and triumphs with our friends in the diabetes community.
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.
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