Navigating the School Experience

Tips for Parents of Children with Diabetes

Julie Costakis

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Parents of children with Type 1 diabetes must be prepared to help our sons and daughters – and their teachers – successfully navigate the school experience.

Our son, Grant, was 11 months old when he was diagnosed with Type 1 diabetes, affording us several years to ready ourselves for his school experience. A month or so before Grant was to start pre-school, at the age of three; we set up a meeting with his teacher to let her know about Grant's situation. She graciously allowed us to educate her about Type 1 diabetes and Grant's specific needs. By spending time with Grant, she became familiar with his normal countenance, enabling her to recognize his personal "warning signs" of a high or low blood sugar. We taught her how to test his blood glucose, count carbohydrates, calculate the correct insulin bolus and operate the Medtronic insulin pump. In return, she made us feel comfortable that she was willing and able to assist us with Grant's daily regimen.

The careful preparations we made with Grant's pre-school teacher helped establish a protocol we've used each year before the start of school. In fact, in a few weeks, we're planning to sit down with Grant's fifth grade teacher to start this process for the upcoming school year. Here are some tips for working with educators to help make your child's school experience safe and positive:

Discuss with your child the importance of educating teachers about diabetes. It is important that your child be on the same "team" with their school support system.
Before the school year begins, meet with your child's teacher and educate them about Type 1 diabetes and your child's specific needs. Be friendly and empower the teacher, giving them the information they need to help them feel comfortable and confident helping to manage your child's diabetes. Also consider meeting with the school nurse, principal and other staff members who interact with your child (bus driver, special teachers, etc.). Thank these educators in advance for the extra time and special attention they may need to offer your child.
Determine who plays what roles in your child's diabetes protocol. As a kindergartener, Grant was only responsible for "cluing the teacher in" when he didn't feel well (they agreed upon a signal prior to the start of the school year). As a fifth grader, Grant will be responsible for his testing, carbohydrate counting and insulin administration after he confirms his data with the teacher.
Take your child's "kit" to the first meeting and explain the lancet, meter, test strips, Glucagon and low blood sugar treatment snacks. Make sure your child keeps his "kit" with him at all times, and that the teachers know exactly where it is located. Prepare a duplicate diabetes kit to keep in the nurses' office in case the first is ever lost.
Each school has its own way of handling student care. Some schools require that all treatment be conducted in the nursing office, though teachers are the "first line of defense" and might notice the warning signs of hypo- or hyperglycemia before crisis strikes. Because your child may need assistance from other school staff, educate as many caregivers who will listen.
In your pre-school meetings with the primary teacher, identify the "flow" of your child's school day, including any time the child won't be under the care of the primary teacher (gym class, school bus line, recess, etc.). Determine specific times and locations for blood tests and snacks, and who will help your child conduct the testing and insulin delivery. Record decisions in a succinct, printed document and review with caregivers. Also meet with "special" teachers to answer any specific questions they have.
Provide an emergency plan that teachers and staff can refer to in unusual circumstances. The most helpful document I prepared was a concise "if-then" sheet that allowed the care giver to simply look up the "problem" and read the solution. It covered everything from how to change the pump battery to handling a seizure.
Ask to be on the morning call list when your child's teacher will be absent, allowing you to be available if the substitute teacher needs help with your child's diabetes protocol. Plan ahead for field trips, special days, track and field day, standardized testing, etc.
When Grant began each school year (grades K-4), I offered to stay in a nearby room to address questions that arose during the first week or two. My presence gave the teachers and nurses confidence and gratitude; they knew that I was willing to do whatever it took to help them feel comfortable with Grant's protocol. While in the nearby room, I also assisted with their "beginning of the year" side work while they focused on Grant's diabetes care. If you are not at the school, make sure the primary teacher has access to you or your spouse throughout the day.
Throughout the year, praise the efforts of your child's teacher. Remember, they're taking on a big responsibility, and they could grow weary. Check in with them once in a while to find out how the plan is working. Communication is key.
Get to know other families in your area whose children have diabetes. Check with the local chapter of the Juvenile Diabetes Research Foundation (JDRF) or your hospital's endocrinology team, which may offer support groups for parents of children with Type 1 diabetes.

Helpful Resources:

Juvenile Diabetes Research Foundation
American Diabetes Association
www.ChildrenWithDiabetes.com
"Back to School Kit" by Roche Diagnostics/Accu-Chek
A helpful publication to secure is "Legal Rights of Students With Diabetes" Prepared by James A. Rapp, Attorney for the American Diabetes Association.

Post note:

At the age of 24 months, Grant Costakis became one of the youngest children in the world to use the Medtronic insulin pump, resulting in a landmark case study conducted through Riley Hospital for Children. Grant's case opened the door for the Toddler Pump Study, a huge success leading to the current day availability of insulin pumps for children of all ages.