JDRF, in partnership with Lilly, hosted a live discussion about starting the new school year stress-free. Our community panel featured people living with type 1 diabetes (T1D) and T1D moms who have back-to-school prep down pat!
Elementary School Tips
Sending your child with T1D to kindergarten can be an emotional and overwhelming time. The panelists offered advice for making this big transition easier for the whole family.
Organization is essential when sending your child to school with type 1 diabetes. “I try to be as organized as possible,” said Adrea Tencer, mom to Olivia, who was diagnosed with T1D at 12 months old and is now heading into the third grade. “My daughter has one bin of supplies that stays in the classroom, and she also carries a small supply pack with her phone, glucagon, and low snacks with her all the time.”
It’s also important to partner early with the school team, including the principal, teachers, nurse, and counselor.
“Before school starts, drop off your child’s supplies and review the care plan with the school nurse or whoever will be in charge of your child’s care at school,” said Jessica Driscoll, a school nurse and mom to Norah, who was diagnosed with T1D three years ago.
She also recommended getting a feel for whether the school has experience with a child with T1D. If they haven’t, there will need to be training. “Often you can get your endocrinologist’s office to provide training, or the parent can if they’re comfortable,” she said.
Many families like to explain T1D to their child’s friends and classmates to reduce stigma. Younger kids or their parents often read a book about T1D to the class, show their pump and CGM, and explain what they are. Older kids make PowerPoints or even videos to educate their peers.
Download Breakthrough T1D’s Back to School with Type 1 Diabetes Checklist.
Download Breakthrough T1D’s guide How to Support Your Student with Type 1 Diabetes (for teachers).
High School Tips
Encouraging your child to become more independent in managing T1D in high school is critical, especially with college on the horizon. “My son learned to become his own advocate and had conversations with his teachers about T1D,” said Janelle Haas, a volunteer school advocate and mom to Cal, who was diagnosed at age 6 and is now 18 years old.
Testing accommodations also become a larger issue in high school, especially for standardized tests like the SATs and AP tests. Having a 504 Plan (see below) provides your child with the accommodations they need, such as time and a half or breaks to treat high or low blood sugar.
Even though the relationship changes with school staff, it’s important to keep the lines of communication open. “My son was having a severe low in the library one afternoon, and he had used up all of his supplies, so I called the school, and the nurse ran juice to him,” Janelle said. “You always want to be able to reach out to them when you need to.”
Download Breakthrough T1D’s guide Help Your Teen Transition from Dependence to Independence.
Managing Low Blood Sugar at School
Low blood sugar at school can be a scary experience for the student and the teacher. Jessica discussed navigating these situations so kids can avoid missing class and feel their best.
“It’s essential to have glucagon at school,” she said. “Having a continuous glucose monitor (CGM) is also a game-changer because it can catch lows before they get severe.”
In elementary school, Jessica also suggested giving the teacher a ‘cheat sheet’ to keep on hand with your child’s name, photo, and easy-to-read information on how to handle high and low blood sugar.
Also, having a 504 Plan (see below) that outlines your child’s diabetes management ensures low blood sugar will be treated quickly and appropriately.
Download Breakthrough T1D’s quick reference guides:
What You Need to Know About Hyperglycemia (High Blood Sugar)
What You Need to Know About Hypoglycemia (Low Blood Sugar)
504 Plans
Working with your healthcare provider and school team to develop a diabetes management plan is crucial to ensuring a safe and successful school environment for your child. Many families have a 504 Plan, a written legal document specifying what reasonable modifications and accommodations the school must provide for a child with a disability, including T1D.
“Make sure your 504 Plan is very specific,” Jessica said. “Include things like if you want your child to carry a cell phone or have extra time for testing, and allow access to snacks, water, and restroom at all times.”
Janelle encourages parents and caregivers to utilize online resources when crafting a 504 Plan. “I would read the Section 504 law before every school meeting. I’d also use the American Diabetes Association sample 504 Plan and review JDRF’s school resources.”
“It was helpful for us to see copies of other people’s 504 Plans when developing ours,” Adrea said. “Having a plan in place that supports our daughter allows her to be a kid first.”
T1D and the College Years
College is another milestone for T1D families. Our panelists suggested students register with their college’s disability services office.
“I got to know the disability services office very well,” said Samantha Wells, diagnosed with T1D 16 years ago, a recent college graduate, a nurse at the Children’s Hospital of Wisconsin in Milwaukee, and the Diabetes Link 2023 NextGen Fellow.
“I had a meeting to go over my plan, which included testing accommodations and having access to food, water, and my phone at all times.”
College accommodations vary from student to student, and panel moderator Karis Tsolomitis, Breakthrough T1D Regional Community Engagement Manager diagnosed with T1D in 2007, encouraged students to think outside the box and take advantage of any perks they can.
“I got first choice of housing on campus and a private bathroom,” she said. “I also got first choice of classes so that my schedule remained consistent in terms of sleep and mealtime.”
Alcohol and T1D is another frequent topic of discussion when it comes to college, and our panelists had some helpful tips.
“It’s impossible not to worry,” Janelle said. “But be realistic and give your child the tools and information they need to make smart decisions.” She recommended asking your child’s endocrinologist to have a frank discussion with them about alcohol.
Samantha suggests your child have at least one friend who knows they have T1D and to check on them. “Make sure your child understands that alcohol will lower their blood sugar several hours later,” she said. “Glucagon will not work if they have low blood sugar after drinking.”
Download Breakthrough T1D’s guide Living Independently with T1D.
Final Words of Advice
In closing, Karis asked each panelist to share some advice based on their experiences navigating school and T1D.
Adrea: “Talk to other T1D parents. Having an ally at your child’s school makes a huge difference. We also switched to the nasal glucagon because it’s much less intimidating when explaining how to use it.”
Jessica: “Find an ally and other T1D parents to connect with. Educate the school as best you can—a lot of people don’t understand how hard type 1 diabetes is, that it’s 24/7 and never stops.”
Janelle: “Take a breath and use restraint of tongue, text, and email. It’s awful when you feel your child is not safe, but if you can approach it calmly, you’ll have a better result.”
Samantha: “For the kids with T1D going off to college, keep your parents and caregivers in the loop. For parents, trust that you have gotten your child to the point that they can be independent. Step back and let them do their thing!”
Special thanks to our back-to-school event sponsor:
