Helping your child cope with a type 1 diabetes diagnosis

A new diagnosis of type 1 diabetes brings a wave of emotion for parents. Worry, anger, sadness, and
fatigue. While navigating those feelings, a parent’s job is also to support their child with their new
diagnosis and all the change it brings to their world. The goal of this article is to provide tips, dialogue,
and practical suggestions on how to explain type 1 diabetes in a way that makes sense for a young child (age 4-10 years), as well as provide answers to some of the tough questions that children often ask. How to explain type 1 diabetes to a school age child:

There are so many books, resources, and sites that encourage adults to explain type 1 diabetes to a child using a lock and key analogy. Take this example from www.diabetes.org: “Insulin is the key, which unlocks the door to the body’s cells. Once the door is unlocked glucose can enter where it is used as fuel for energy so we can work, play and generally live our lives. If there is no insulin present in the body, as in type 1 diabetes, then there is no key to unlock the door and the glucose stays in the blood.”¹

To an adult, this makes sense. We understand it. We can recognize the symptoms at diagnosis, and the
reason why insulin helps the body.

The difficulty I have found over years is that children are very literal thinkers and an analogy like this
often leaves a child thinking they actually have locks and keys in their body. It is similar to how we
explain many things in the hospital and why many of them are frightening to children. For example,
“You are going to have a shot” could be interpreted by a young child as “Someone is going to shoot me.” Or “This is called a stretcher” could be interpreted by a young child as “That is what people go on to have their body stretched.” How frightening! The language we use commonly in the medical world can so easily be misinterpreted by a young child. (In case you are wondering, I would encourage the word needle or “poke” rather than shot, and bed with wheels rather than stretcher.)

I highlight this so we can outline how important it is for us to use concrete, simple, and developmentally appropriate language when explaining healthcare related experiences, conditions, and treatment to young children.

But how on earth can we explain the destruction of the beta cells, the function of a pancreas, the
necessity of insulin and high glucose to a young child in a simple yet concrete way?

My favourite way to explain type 1 diabetes to a child is through art. It is visual, concrete, accurate,
honest, and age appropriate. Here is a step-by-step guide on how to do this yourself at home with your
child. The age range is 5 years old and up. Some adults have even found this helpful!

Materials needed:
• Play-Doh (2 colours)
• Paper
• Basic body outline
• Markers

Instructions:

• On the body outline, draw a basic version of an esophagus, stomach, and pancreas. Don’t worry- your art abilities are not important! Have your child add a face.
• Have the child use the first colour of Play-Doh and pretend it is a food they love to eat. Show the child on the body outline how food goes into our mouth, down the esophagus and into the stomach
• Try using this script: “Our stomach then takes the sugar from that food and sends it to all different parts of our body.” Break up the piece of “food” and put it in all different parts of the body. “The sugar gives our body energy so we can run, play, and even think! Before the body can use sugar for energy, it needs to have a partner. The partner is called insulin and it is made right here in the pancreas.” Put some of the second colour of Play-Doh in the drawn pancreas to represent the insulin, then use the rest to make a “partner” for all the “sugar” throughout the body.
• Then ask the child what would happen if the pancreas didn’t make the insulin partner. Take all the “partner” Play-Doh away. Help the child to understand that a lot of sugar would be in the body, but there would be no partner. The body would not be able to use the sugar for energy.
• Ask how would that person’s body feel? Tired, unwell, and without any energy.
• Explain to the child that “this is what happens when someone has type 1 diabetes. The body isn’t making the insulin partner anymore, so they need to get insulin in a special way (either through an insulin pen or an insulin pump). The insulin goes into the body through the insulin pen or pump and finds all the sugar to partner up. That person then can do everything that other people can do, they just get their insulin in a different way.”

Unsure if you’re child is ready for an insulin pump? Order a free Pod Experience Kit, which includes a sample needle-free Pod, and see what they think. Click here to Get Started. 
 

How to address the tough questions:

The questions children ask can be so hard to answer. You as the parent are trying your best to cope
with your own feelings related to the diagnosis, then you are trying to hold it together while your child
asks, “why did this happen to me?” Cue the tears!

The first thing I always say to parents is that it is okay to show your own emotion related to the
diagnosis, you just need to explain where those feelings are coming from. A script you could try is: “You can see Mommy is sad right now, and that’s because it’s normal to feel sad when someone in our family has had a big change that is hard for them. It is okay to cry when we are feeling sad, and you didn’t do anything wrong to make Mommy sad. Tears are normal.”

Tough question #1: Why me?

This is a really difficult one. Your first thought is likely “No kidding. Why did this happen to you?”
Children under the age of 8 often have misconceptions when it is related to illness. They often believe
that they did something to cause this, or that they caught it from someone. The way I answer the “why
me?” question is like this: “That’s a really good question. The tricky thing is no one knows why some
people get type 1 diabetes and some don’t. What we do know is that this isn’t anyone’s fault. It is not
your fault, my fault, or your siblings’ fault. It had nothing to do with what you ate, or how much exercise you got. It is one of those things that just happened. Your pancreas just stopped making insulin.”

Tough question #2: Will it go away? Is there a cure?

Also, a very difficult one. It is a fine line between providing hope for a cure one day, but also balancing
that with realistic expectations. If we tell a child “One day there will be a cure”, that is an ambiguous
timeframe and to some children they may think that could be tomorrow, next week, next month or next year. We know that at this point none of those timeframes are realistic, so how do you keep hope
without false hope? This is how I answer this one: “Right now, there isn’t a way to make type 1 diabetes go away or cure it. The scientists and doctors are doing so much work each day to try to find a cure, but they don’t have that answer yet and won’t for a long time. You know how we talk about raising money for diabetes? This is the reason why. We are raising money so that the scientists can spend a lot of time focusing on this so that hopefully one day there is a cure for type 1 diabetes.” At this point in the conversation, you can talk about the advancements that have been made if you feel that your child would benefit from that. You can do a quick Google search to find a photo of the first insulin pump that was a backpack, then show them the size of an Omnipod®! That, in itself, could help them to see what research and advancements in technology have done for the people living with type 1 diabetes.

A note on siblings

It can be very difficult to be the brother or sister during a new diagnosis. Everyone is calling to ask how
the child with diabetes is doing, bringing them gifts, and all the extra attention they receive. I know as a parent it is hard to imagine a child wanting this kind of attention (a hospital stay, needles, carb counting, and the list goes on) but children don’t see it that way. Attention is attention, and they crave it from their parents. My best advice for helping your other children cope with this change is to acknowledge their feelings. You can try a script like “It must be really hard being you right now. Mom and Dad are so busy with learning all this new diabetes stuff, you might be feeling left out. I want you to know that we are here for you, and you can talk to us about how you’re feeling.” Once you have a moment, perhaps a week or two after the diagnosis, carve out some special one on one time for that sibling. It doesn’t have to be anything fancy, even just time when you go to the park on your own with them or have a movie night together. Be sure to label it as special time for them, so they know you are listening, caring, and always there for them. Offer to involve them in diabetes routines as much as they would like to participate (never force it!). Even involving them in the teaching with the Play-Doh is a nice way for them to feel involved and connected.

To wrap up, it is hard navigating those early conversations about type 1 diabetes with your child. I hope that you found it helpful to have some scripts to use and possibly a fun art activity to do together at home. Never hesitate to reach out to your diabetes team for help! If they don’t have someone specific on the team to support your child’s coping, they likely can make a referral so you can access those supports as needed.

Hey parent … you’re doing a great job! You got this!

- Heather

 

¹ Diabetes UK, “Understanding diabetes: Your key to better health”, online:
<https://www.diabetes.org.uk/resources-s3/2017-11/understanding_diabetes.pdf>.