We asked parents of children with type 1 to share their firsthand advice and wisdom for what works — and what doesn’t — when it comes to establishing positive relationships and creating the best possible care routines with the school nurse.
Start Off on the Right Foot
“Before our 8-year-old son Anton was diagnosed with type 1 in October of this past school year, I didn’t even know the school nurse’s name! In the hospital, as the diabetes educator began to talk about blood sugar management at school, I realized just how big a role this person was going to play in our son’s life. So I called her up just to introduce myself and give her a brief run down on what was happening. It felt a little awkward, but she was very understanding and got the ball rolling on the paperwork. We then met informally to talk about how my son was feeling about his diabetes and what kinds of accommodations might work. I think this conversation made the formal care plan meeting with the principal much easier than it otherwise would have been. My advice to other parents and school nurses is to simply get to know one another as soon as you can after the child’s diagnosis. The more information you can share before creating a care plan, the stronger and more effective that plan can be!”
–Amy, Jackson, Miss.
Make Routines Age-Appropriate
“At our daughter Willow’s school, there is one other student with type 1 diabetes, but he’s in 5th grade. When I first started working with the school nurse, I felt that some of the care routines she was suggesting, especially trekking unattended to her office for all checks and insulin needs, might be fine for an older child, but not for our newly diagnosed 5-year-old. It’s a large school, and the kindergarten wing, school nurse’s office, and cafeteria are all in different parts of the building. We were able to hammer out a compromise that felt more age-appropriate: Willow’s classroom teacher took on responsibility for her checks, and a classroom aide accompanied my daughter to the nurse’s office for her lunchtime bolus.”
–Heidi, South Colonie, N.Y.
Learn His Language
“When my 6-year-old son Ryan has a low, he may feel anxious, dizzy, nauseous, hungry, cold and clammy, and so on. But don’t expect him to use these words! I know when he says, “my legs are shaky” or, “my brain feels jumpy,” that we’re probably looking at a low. If he says, “my tongue feels fluffy,” or “my mouth is itchy,” he’s expressing thirst, and it’s likely the sign of a high. I made a list of common words and phrases Ryan uses when he’s in distress and gave copies to both the school nurse and his teacher at the beginning of the school year. They’ve both told me how handy this list has been!”
–Lisa, Duluth, Minn.
Help Him Feel Like a Normal Kid
“A few years ago, our son Luke was going to the nurse’s office at his scheduled times, but regularly waiting 10 or 15 minutes for blood sugar checks, because she was busy with other students. I didn’t know this was going on until Luke told us that he missed out on most of a class activity one day. It’s so important for a child’s self-esteem to feel like a normal kid even when dealing with this disease. Except in cases of emergency, please make every effort to stick to the scheduled treatment times, so the child doesn’t have to miss any more class time than is absolutely necessary.”
–Elizabeth, Chicago, Ill.
Keep the Lines of Communication Open
“Our elementary school has about 500 students and only one school nurse. To help streamline the process of taking care of our 9-year-old son Liam, I created a daily checklist of items like blood sugar checks and meter readings, snack times, time/amounts of insulin given, any supplies running low, and a place for both of us to leave extra notes. I then photocopied this 180 times and had it bound as a spiral notebook with a bright red cover and our child’s name and photo on it. The nurse can quickly fill it out, and it’s our son’s responsibility to take it home with him each night (and bring it back the next day). She has told me on several occasions how helpful it is having this kind of quick and easy communication tool. I am happy to help her out in any way I can.”
— Darnella, Atlanta, Ga.
Bear With Us
“Over the course of the first year after Brayden’s diagnosis, I learned many things. For example, he prefers finger pokes to be in his left hand during the school day because, being right-handed, he finds it easier to write. Later, I found out he doesn’t like grape juice, which I had sent into the nurse’s office at the beginning of the year, so we replaced it with apple juice. I also learned that if I ever have to do an infusion site change in the morning before school, it helps to send in a note explaining why Brayden might be in a bad mood (site changes are a challenge for us). I am grateful for the school nurse’s supportive attitude through all my stumbles and fumbles in that first year. Every time I let her know a preference I had just learned or some other new tidbit about Brayden’s care, I could consider it done.”
— Katie, Ocean City, Md.
Call Us Anytime
“Every year, no matter how many years I’ve now known her, the first thing I say to the school nurse is always this: If you have any questions about my son’s care, ever feel that a change needs to be made to his 504 Plan or have any concerns about anything — and I mean ANYTHING — related to my child and his diabetes, call me day or night, email me, snail-mail me, ring my doorbell, send me smoke signals, hire a skywriter… just let me know! I am not a control freak, but I am my 10-year-old’s primary caregiver and his number one advocate, and I need to be in the loop whenever an issue comes up, no exceptions. On my end, I promise to respond honestly and openly to any concern that is raised, and I’ll do whatever it takes to come up with a solution.”
— Marie, Colorado Springs, Colo.
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.
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