Planning and technology support ākonga with diabetes

By Education Gazette editors

Issue: Volume , Number

Posted: 8 March 2023

Reference #: 1HAZpC

For Sandringham parent Juliet Short, the start of the 2023 school year for daughter Grace, who has Type 1 diabetes, involves extensive daily planning beyond the need for uniforms, books and lunches. But a strong support network at school goes a long way to ease the challenges.

Grace (left) enjoys spending lunch time with friends at St Cuthbert’s Junior School.

Six-year-old Grace was diagnosed with Type 1 diabetes when she was three. It’s a life-changing condition where the body’s immune system attacks the pancreas and destroys the body’s own insulin-producing cells. Technology and a strong support network at home and school are helping Grace to have as close to a normal childhood as possible.

“Our family’s preparations for the 2023 school year include arranging any training that my daughter’s school support team needs to feel confident caring for her; arranging for medical supplies and extra snacks to be kept at school, and planning for sports, field trips and other school events that may cause high or low blood glucose levels,” explains Juliet.

Grace is lively and independent, but when she was diagnosed with Type 1 diabetes, her parents Juliet and Nick set out to do all they could to help navigate the challenges of the life-long condition so Grace can concentrate on her learning, friendships, and sports.

Constant management

Living with Type 1 diabetes requires constant management of food and activity, along with frequent finger-prick blood tests and insulin injections several times a day. Technology in the form of insulin pumps and continuous glucose monitors can also be used.

From the beginning, Grace’s parents purchased a continuous glucose monitor (CGM) which is attached to Grace’s arm and takes blood sugar readings every five minutes. As well as removing the need for frequent finger-prick tests, the CGM sends a live-stream of information to a cellphone and can provide early warning of high or low blood sugar levels.

“We are extremely privileged to have been able to afford a CGM from the very early days – but I’m very conscious that not every Type 1 diabetic child has that privilege. There’s nothing I would like more than to see CGMs funded for all children living with Type 1 diabetes,” says Juliet.

Teacher aide Renee Sharp supports Grace during school hours.

Learning curve

There are around 28,000 people living with Type 1 diabetes in Aotearoa – around one out of 500 secondary school students and one out of 1,200 primary school students will have the condition.

Supporting a child with Type 1 diabetes can feel overwhelming for teachers, but schools are experienced in supporting students with additional needs, including making use of a wide range of resources and information.

“It’s quite a learning curve because I guess when you take on a Type 1 child, you’re told if their blood sugar goes too low and you don’t act immediately, they could end up unconscious, and if they spend too much time high they are at risk of long-term complications, which is nerve-racking,” says Juliet.

“The biggest thing for schools is educating themselves around what Type 1 diabetes is: the physical and psychological management. It’s OK to acknowledge that having a Type 1 diabetic student in your class is a huge learning curve, but at the same time when you know a bit about it, it gets a lot easier. There are a lot of great resources you can use to self-educate.”

Grace was diagnosed when she was at kindergarten, and Juliet says they tended to monitor her blood sugar remotely and would be constantly texting instructions.

“Grace’s ECE teachers were an amazing, caring bunch of people, and they made it work but it was very hard when she was first diagnosed. Her blood sugar levels were very volatile and there was no teacher aide support available.”

Liz Stevens has had a lot of experience with tamariki with Type 1 diabetes.

Juggling act

Grace’s new entrant teacher at St Cuthbert’s Junior School had no experience of Type 1 and Juliet spent time with the teacher and teacher aide getting them comfortable with what was required.

“When she first started school, I made myself available to be on site as much as they wanted – it was probably only two days when I was fully on site and then they got into the swing of things, and we just texted when they wanted a bit of back up.”

When she started school, Grace had a Dexcom G6 CGM which takes a blood sugar reading every five minutes and sends the data to a cellphone as well as to anyone who is following her Dexcom App on their cellphone, such as parents, a teacher, or teacher aide.

Grace has been using an insulin pump, rather than insulin injections, for the past year.

“The pump does the calculations so when she takes her lunchbox to school, we put a note on the top of it saying this is how much carbohydrate is in each item in the lunchbox and then they enter that in the pump and the pump calculates how much insulin she needs. The pump also talks to her CGM – if she’s running a bit low, the pump will automatically reduce her insulin; if she’s a bit high, it will give her extra insulin.

“That’s made a huge difference in the number of decisions and interventions we have to make. The number of times we touch the pump every day has dropped a lot, which is wonderful for her.

“It’s a constant juggling act, but we are very grateful that she has a funded teacher aide to support her until she gets to the stage where she is self-managing,” says Juliet.

Classroom challenges

While people with Type 1 diabetes are on a blood sugar rollercoaster 24/7, Grace has the support of a teacher aide, Renee Sharp, who accompanies her through the day and helps her manage her blood sugar and the technology.

Grace is the fourth Type 1 diabetic student classroom teacher Liz Stevens has taught.

“I started 11 years ago with a little boy in my class; I didn’t know anything about Type 1 before then. He went home unwell from school, and I got a phone call that night to say he was in Starship with Type 1 diabetes.

“He was in Year 1 when he was diagnosed. I went straight into getting as educated as I could, but it was a big learning curve. I was working in a junior classroom and we managed doing finger pricks every hour. The responsibility to be always worried about his blood sugar levels and managing a whole other class as well was a big shift,” she says.

Having a student with Type 1 diabetes can be overwhelming to begin with.

“My advice if you are told you will have a Type 1 student in your class is to learn as much as you can. The more you know, the more prepared you feel,” she says.

Dreams and goals

Grace is now in Year 2 at St Cuthbert’s Junior School in Auckland. She loves writing, swimming and sport.

“When I go swimming, I can take the pump off and put it back on. I disconnect and reconnect it – it’s easy,” says Grace.

“There’s the odd time when her blood sugars go low and she has to sit out PE, which she gets a bit dark about because she loves her sports,” says Juliet.

A special kitbag containing juice, glucose tablets and back-up medical supplies goes everywhere with Grace. With the aid of the insulin pump and CMG, Grace can now play with friends at lunch time without Renee.

“We always have an adult watching when she boluses [administers a dose of insulin] but having the technology has allowed her to take so much more ownership at a young age. From a teacher’s point of view, that is so cool to see,” says Liz.

During play and lunch times, Grace carries her phone in a pouch and Renee monitors her remotely.

“It’s amazing because we found having a teacher aide beside her all the time meant she just didn’t have the normal playground interactions with her friends. Renee has picked up both the physical and psychological sides of diabetes management so quickly and is doing an amazing job of supporting Grace in her goal to eventually manage her blood sugar levels independently,” says Juliet.

“Grace knows how to unlock the pump and deliver an insulin bolus and she is starting to recognise when she is high or low and decide what to do.”

One of Grace’s dreams is to catch the school bus. “When she can reliably manage a low [blood sugar], she’ll be able to go on the school bus,” says Juliet.

Supportive classmates

Reflecting on why things have been manageable so far, Juliet acknowledges Grace’s independent attitude along with the technology and support from kindergarten and school. Classmates have also been a big help.

“One thing we have done from the start, with Grace’s permission, is we have always been very open about things and made sure that classmates feel they can ask questions. Children are mostly just curious. The ones who have been in her class from New Entrants are used to it.

“One day the teacher called out to the teacher aide ‘how’s our girl doing?’ On the cellphone which can be seen in the classroom, there’s a Dexcom line. If she’s too low, it will be red and if too high it will show yellow. If she’s in the right range, it’s grey. One of the girls in Grace’s class called back ‘she’s fine, she’s in the grey’,” concludes Juliet.