As your child with diabetes heads back to school this fall, chances are you’re concerned about more than if she likes her new teacher or whether you’ve bought all the necessary supplies. You also worry about whether the school is adequately prepared to deal with episodes of hypoglycemia, whether her teacher is properly educated about this health condition, and how often during the day your child’s blood sugar levels should be checked.
"Children at different ages have different needs at school,” says Crystal Woodward, the director of the American Diabetes Association’s Safe at School program. “But whatever their age, every child with diabetes should have a diabetes medical management plan in place for school.” Setting the stage for a successful school year means starting to prep in the summer. In other words, don’t wait until the first day to contact your child’s school!
"We usually tell people that a few weeks in advance, they should start communicating with the school nurse,” says Marrissa Ludwig, RN, BSN, a pediatric diabetes educator at University of Minnesota Health in Minneapolis. “Keep in mind, of course, that some school nurses are not around in the summer.” Find out when the staff returns and make an appointment for when you can go in and speak directly with the nurse.
Under federal law, children with diabetes have certain rights: she should be able to get the diabetes care she needs, to be safe and, to participate in school activities. The school should provide trained staff members who can monitor blood glucose levels and administer insulin as well as glucagon, and provide diabetes care during field trips, extracurricular events, and all school-sponsored activities.
Students who self-manage their diabetes care should be permitted to do so anytime and anywhere. And the school should not make a parent go to the school to care for a child’s diabetes, transfer her to a different school to receive care, or prevent her from participating in field trips, sports, and other school-sponsored activities. For more information on federal laws that protect your child, visit the ADA's website.
The American Diabetes Association recommends that a child with diabetes have a 504 plan or other written accommodations plan in place. All schools that receive federal funding must comply with the Section 504 laws, which require the schools to identify and meet the needs of students with disabilities so they may be educated in a safe and fair environment.
The 504 plan is a legal written document that spells out what modifications and accommodations must be provided for a child with a disability. (Diabetes is considered a disability, and a child does not need to show a negative impact on learning and academics in order to be protected under Section 504 and other federal laws such as the Americans with Disabilities Act.)
“A 504 plan protects the child, lays everything out, and is a legal document,” says Mark Wheeler, MD, of the pediatric endocrinology department at the University of Arizona.
“And it can be helpful when the child is ready to go off to college, as it’s helpful to be able to show the kinds of accommodations the child had previously so the college knows what is needed. A 504 plan helps the school and it helps the child.”
When a child has a 504 plan, everything is spelled out, explains Audrey Koltun, RD, CDE, CDN, of the Division of Pediatric Endocrinology at Cohen Children’s Medical Center in New Hyde Park, New York. “It includes many aspects such as bathroom and water breaks if needed at any time, and permission to eat where and when necessary, including during an exam,” she says. “It also allows capable students to self-manage their diabetes and to keep their supplies with them.”
However, having a 504 plan is not necessary in order for a child with diabetes to be protected under this law. Not all parents request a 504 plan for their child with diabetes. “It’s really up to the family,” Ludwig says. “Some schools are so cooperative that a family may only to a 504 if they are having trouble with the school.”
Woodward recommends parents take a pro-active approach to developing a 504 plan. “Write your child’s 504 plan while things are going well at school,” she says. “It’s much better to be pro-active rather than re-active after a problem occurs.”
As far as special celebrations at school, the goal is to treat a child with diabetes like her classmates, Koltun says. “So never take food away from the child or exclude him or her,” she says. “Celebrations are usually handled with parent involvement. They can decide how much and what food they want their child eating during the celebrations.” Older children may decide for themselves, she says.
Woodward says that the ADA’s philosophy is that there should be no forbidden foods. “Everything can be worked into the meal plan,” she says. “For a celebration, it is important to give some advance notice so the staff and parents can plan ahead. For example, extra insulin may be needed to cover additional carbohydrate intake.”
In terms of a hypoglycemic emergency, school staff should be trained in dealing with this, Koltun says. “The school must have a plan to treat the child,” she says. “Not all schools have a registered nurse, so this can also be done by Trained Diabetes Personnel. Not all schools train all the coaches, health aides, lunchroom aides and bus drivers, but they do if the student is with any of them often.”
Trained Diabetes Personnel are taught the correct protocol for dealing with a hypoglycemic emergency, and they know how much of a fast-acting sugar to give, depending upon symptoms, and they know what to do if the child is losing consciousness due to hypoglycemia, Koltun says.
In terms of disposing of needles at school, they typically are put into a sharps container in the nurse’s office, Koltun says. “The sharps are collected by a service on a set schedule or at the end of the school year,” she says. “However, each school, town, or city may have different policies.” Many students take their lancets and other sharps home every day for disposal, notes Woodward.
Finally, it important to respect a student's privacy. The school should discuss confidentiality and how students can signal for help or leave the classroom for medical management without drawing unwanted attention from peers. Tweens and teens are often extremely self-conscious and may be sensitive to being viewed as "different" from their peers.
Technology Pros and Cons
The use of technology and transmission of data should be individualized for each student. Woodward advises families to discuss data sharing options with the school nurse. "Many school nurses find it helpful to be able to monitor students with type 1 diabetes in real time using share technology," Woodward says. "If this is agreed upon, an appropriate smart device is needed for remote monitoring purposes."
Whether or not to make classmates aware of a child’s diabetes is a personal choice. However, if the child is on an insulin pump and/or a continuous glucose monitor, these can sound alarms and alerts. "The class should know about this so they are not frightened or disturbed,” Koltun explains. Alert settings should be kept to a minimum in the classroom to prevent disruptions, Koltun says.
Although an audible alert while wearing a continuous glucose monitor is necessary for hypoglycemia, it’s recommended that the alert be set on vibrate for hyperglycemia, or high blood sugar. Some parents want their child’s friends to know about the diabetes since the friends can be alert and notice the symptoms of hypoglycemia and alert a trusted adult.
Kathleen Smith, PhD, LPC, a licensed therapist and mental health writer advises parents to stay calm. "Staying calm about your child managing their diabetes at school is ultimately more effective than trying to calm your child," Dr. Smith says. "If you're anxiously focusing on the issue, then it's likely a child will do the same."
But, Dr. Smith cautions, this doesn't mean to avoid bringing up the subject all together. "Try thinking about a way to talk about it that's neutral or curious. It might mean asking a simple question like, 'What's your plan for checking your sugar throughout the day?' "
For kids, the therapist recommends reminding them that the start of the school year is a transition for everyone--new people, new experiences, and for some kids, that might mean learning about diabetes for the first time.
"Let your child know that other children might ask questions and not totally understand the condition," she explains. Help them be sympathetic to the curiousity of others. Try to help them remember a time when they learned something new because of a friend or neighbor in their lives.
In general, Dr. Smith says it's important to remember that it's normal for anxiety to increase at the start of the school year for both parents and kids. It's easy to think that managing diabetes is the "cause" of this anxiety, when in reality it's just a facet of all the new challenges of the school year. "It's important to make sure a child is managing their diabetes well, but it's also good to sometimes remove the focus from it and consider that some of the stress may be triggered by the reality of adjusting to a new school year," she explains.
As the school year approaches, there are a variety of excellent resources to help your family successfully navigate the next 10 months and beyond. Download and review now, before the school year starts. Here some of our favorites: