When a child with type 1 diabetes develops a low blood sugar, it can impair thinking, making it harder for the child to communicate to teachers and other adult caregivers the critical information that help is needed.

This is a scary situation for everyone. And that’s why working with kids with type 1 to develop and practice “cue words” for describing lows is so important. When kids don’t have to reach for the words to get adults to sit up and take notice, it means that lows get more immediate attention — and immediate treatment.

Cue words might sound like magic words. But in reality, they’re better described as accurate words. “Part of caring for children with T1 is helping them become aware of what they’re feeling when an out-of-range number develops… so they can understand these feelings themselves and so they can express them to their caregivers,” says Mark Heyman, Ph.D., C.D.E., director of the Center for Diabetes and Mental Health in Solana Beach, California.

Discovering your child’s cue words can come from simply being consistent in asking (How do you feel when you have a low? What does a high feel like?) and listening closely to the answers.

Depending on your child’s age, the outcome of these conversations might be key words and phrases such as:

Low: “I feel dizzy. I feel sweaty. I need to sit down.”

High: “I feel slow. I need to go to the bathroom.”

As your child’s own cue words develop, you can share them with your child’s teachers and school staff and include them as part of your child’s diabetes care plan. You and your child can practice how to share the feelings the two of you have talked about with the child’s teachers and other caregivers whenever needed. Help your child understand that these words help grown-ups know what to do.

You can also practice with school staff how to recognize and treat lows, including recognizing the words your child might use to signal that he or she feels out of range. Role-play with teachers and staff how they can appropriately respond to your child’s needs, including offering juice or a snack, performing a blood sugar check, and/or seeking assistance.

This is practice that pays off. Suzanne Cooper, a teacher in Freehold, New Jersey, who regularly works with students with T1D (and is a D-mom to an adult son) finds that consistent use of cue words as part of a child’s overall care plan creates more confidence for everyone that lows will be caught.

“When I have a parent of a child with T1D come in at the beginning of the year, I ask them directly about this: ‘What can I expect your child to tell me if he or she is feeling low, high, or just not well and needs some help? Let’s get out a piece of paper and make a list and then photocopy it so that every single staff member that comes in contact with this child will be aware of what the child might say and what they are trying to communicate.’”

Cooper also recognizes that cue words can be very different for older and younger kids, and that these language variations should be embraced.

“There are words that adults recognize as meaning something is wrong… like someone saying they are shaky or dizzy. But we need to understand that these are not typical go-to words for very young kids, especially under stress. I once had a 5-year-old with T1 tell me that butterflies were fluttering in her head. That was all she could say. We checked her sugar and it was 71. From then on, whenever I noticed that she looked a little off, I would ask her, ‘Are the butterflies fluttering?’ and she knew exactly what I meant.”

Heyman has come to a similar finding. “We need to respect that different kids experience different symptoms and will use different words. It’s important to help kids feel comfortable expressing themselves in situations that can feel very scary for them. As adult caregivers, it’s our job to listen and act.”

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.

Related topics:
On Our Own: What No One Knows About My Child’s First Weeks With Diabetes
In the Spotlight: Teaching Kids to Recognize Their Body Signals
What Your Child’s Teacher Doesn’t Know About Type 1

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