Lessons in love – a mom steps up to educate others about T1D
Like all parents of a child with type 1 diabetes (T1D) entering the school system for the first time, Elizabeth Moreau was very concerned about the well being of her daughter, Mirren, when she started kindergarten. Diagnosed in April 2013 when she was just four-and-a-half years old, Mirren had only been living with the condition for several months, and Moreau had much to learn about T1D and its management.
“I just assumed there would be designated support – some kind of educational assistant or other staff member at the school who would help with Mirren’s diabetes management,” she recalls. “I even went to see the principal shortly after she was diagnosed to give them advance notice to arrange assistance for her.”
Canada has one of the highest incidence rates of T1D in children under age 14 and while some provinces have T1D guidelines, others do not. Without provincial regulation, the implementation of T1D policies is left to the discretion of individual school boards or schools themselves.
Although the school did not have any policies regarding T1D management, Moreau was fortunate that the principal was open to working with her. Nevertheless, the responsibility of ensuring proper management of her daughter’s T1D was Moreau’s alone.
Driven by the need to keep her daughter safe, Moreau sourced information about T1D and organized training sessions for teaching and non-teaching staff so they could learn how to test blood sugar levels and recognize the signs of high and low blood sugar.
As a communications specialist with the Canadian Paediatric Society, Moreau shared her story with her colleagues and soon discovered there was a widespread need for resources in schools to help support children and their families living with T1D.
In 2014, the Canadian Paediatric Society, together with the Canadian Pediatric Endocrine Group (CPEG), published a position statement on managing T1D in schools.
Its primary recommendation is that every province require school boards to establish policies for T1D. In addition, it calls for all children with T1D to have an individual care plan.
“While drafting this position statement, we realized that the tools that parents, educators and school boards need to implement our recommendations did not exist in Canada,” recalls Moreau.
Safeguarding kids’ well-being
As a result, Diabetes at School [diabetesatschool.ca] was launched in October 2016, led by the CPS in partnership with CPEG and Diabetes Canada.
The site includes three levels of information. The first is awareness, which provides basic instruction for anyone who comes into contact with a child who has T1D, such as recognizing and treating low blood sugar.
Literacy, the second level of information, is more in-depth and is aimed at those who have constant contact with the child. It explains the daily challenges of managing T1D, including the impact of food and physical activity on blood sugar levels.
Expertise, the third level, is even more detailed and includes all the information in the first two levels, as well as instructions like how to perform a routine blood sugar check or administer insulin.
Central to the site is a template Individual Care Plan, which details all aspects of a student’s daily management so that everyone at school knows what to do.
“A consistent approach to T1D management in schools is critical to safeguarding children’s physical and mental well-being,” says Moreau. “That is the primary goal of Diabetes at School.”
JDRF Canada also provides a number of resource materials to help parents advocate for their children in school.
“Basics to Share with Other Caregivers” is a page you can print out or email to a teacher, family member, daycare provider or other individual who will be involved in your child’s care. It provides information about T1D such as symptoms, useful statistics, and self-management. It outlines different types of insulin delivery methods such as syringes, insulin pens and insulin pumps, the importance of blood glucose monitoring, and offers information on exercise and stress.
“Management Plan for Schools” is a downloadable PDF that will help you work with your child’s teacher on building a self-management plan for your child in the classroom. There are also special pages to inform your child’s school on what to do in the event that your child’s blood sugar becomes too low or too high (hypoglycemia or hyperglycemia).
"Communicating with Schools" and “Educating the Educator” contain lists of tips that can help you nurture your relationship with the school, communicate better with them, and educate them about your child’s condition. They discuss safety on the playground and special case scenarios such as what to do on field trips. They also suggest that you ask members of your child’s health care team to help educate teachers about life with T1D.
More ways to help
In addition to Moreau’s search for a consistent approach to T1D management in schools, her T1D advocacy has continued to grow. Key among them was the Foundation’s 2016 Kids for a Cure Advocacy Day on Parliament Hill.
This two-day annual event provided a selected group of 27 children of all ages with the opportunity to meet with more than 80 Members of Parliament (MPs) and Senators to help raise awareness of T1D.
For Mirren, one of the many highlights of the event was presenting her experience with the disease to MPs through a scrapbook she had made.
“This was all new to her, but when you are eight, you are not intimidated by the process or by meeting important people,” relates Moreau. “Many of the kids were quite uninhibited and very honest about their experiences, and the MPs were very interested in listening to them. It is really special for a child to have the undivided attention of an adult, so it left a big impression.”
The children also had the opportunity to attend question period in the House of Commons where they were publicly acknowledged as Kids for a Cure Advocacy Day delegates.
“It was exciting,” says Moreau. “The Prime Minister was in the House and we got to sit in the Gallery, so that was a really unique experience. I think it’s important that as many children [with T1D] as possible have this opportunity.”
Another key event for Moreau is the JDRF TELUS Walk to Cure Diabetes. Moreau and her family have participated every year since Mirren was first diagnosed in 2013.
“The first year we walked, it was just my husband, our two children and me, but since then we have engaged a team of family and friends who come out and join us every year,” Moreau recounts. “It’s become a tradition, and this year’s Walk in June was our fifth year.”
Moreau estimates that her family has raised about $5,000 in donations to date. While she acknowledges the critical need for T1D research funds, she says the value of the Walk extends far beyond fundraising.
“We enjoy the sense of community and being with other people who are dealing with the same issues,” explains Moreau. “It’s not often that you get to be with a group of people who completely understand what you live with on a day-to-day basis. Bringing the community together is so important.”
Moreau adds that newly diagnosed families should be encouraged to participate in the Walk.
“Receiving a diagnosis of T1D is a very isolating experience, and so realizing you are part of a larger community is both helpful and comforting.”