For parents of children with type 1 diabetes, November is a time to celebrate. Above all, we honour the man whose work saved our children's lives. Frederick Banting was born 125 years ago -- Nov. 14, 1891 -- and is the reason we mark Diabetes Awareness Month. Dr. Banting's discovery of insulin was nothing short of a miracle for children with type 1 diabetes, a condition where the body stops producing the hormone that converts food into energy. Before him, the disease was usually fatal. The only "treatment" was a diet so restrictive that children often starved to death.
We also celebrate the biomedical advances that have improved day-to-day diabetes management, giving people more control over their blood sugar with less effort that in the past. Insulin pumps, continuous glucose monitors, parent-engineered devices that allow remote viewing of their children's blood sugar -- all of these tools make diabetes a bit less scary, and help reduce the risks of long-term complications. Diabetes management is still 24/7, but much improved than for previous generations.
The positive outlook for kids with type 1 doesn't make the diagnosis any less devastating. It is life-changing, heart-stopping news. Many families mark their children's "diaversary" every year (usually with a whack of carbohydrates and insulin) because that is the day that everything changed. There is life before diabetes, life after diabetes, and no time in between to adjust. Not only does type 1 affect every aspect of daily living, but it carries an ever-present threat of short-term danger and long-term damage.
I didn't feel like I could ever leave her with another adult, let alone send her to school by herself.
When school-aged children are diagnosed, planning their return to class is part of the learning curve, along with checking blood sugar, doing insulin injections, counting carbohydrates, and treating high and low blood sugars. Parents with no experience themselves have to teach others how to take care of their children. It takes weeks and months of dealing with diabetes day in, day out to start to get used to it. So it's almost inconceivable for parents to send their kids to school alone. Even parents of newly-diagnosed babies and toddlers start worrying about school entry years in advance.
My daughter was diagnosed in 2013, about five months before she started kindergarten. I didn't feel like I could ever leave her with another adult, let alone send her to school by herself. So imagine my surprise when I learned that no adult would be designated to help her during the school day, because Ontario has no policy to provide support for students with chronic health problems.
The Canadian Diabetes Association estimates there are 30,000 school-aged children with diabetes across Canada, yet only five provinces have specific policies or guidelines on diabetes in schools. Even some of those fall short of providing everything that kids need to ensure full participation in school and the best possible management of their diabetes. For example, because not all policies provide for help with insulin administration, some parents opt for treatment regimens that accommodate the school day instead of the best interest of their child.
In provinces where there is no overarching policy, there is a wide variation on what supports students receive. Some school boards have policies, while others do not. In Ontario, support is inconsistent across the provinces and even within school boards. Too many parents are on their own when it comes to securing day-to-day help for their children, whether that involves giving insulin, checking blood sugar, supervising meals and snacks or preventing hypoglycemia. We patch together solutions that are often less than ideal. We rely on a mix of persistence, advocacy and goodwill to ensure that our kids have what they need to keep them safe at school.
Too many parents are on their own when it comes to securing day-to-day help for their children.
In 2014, the CPS and Canadian Paediatric Endocrine Group published guidelines on managing type 1 diabetes in school, as did the Canadian Diabetes Association. All of these expert groups recommend that each province needs a policy to ensure consistent support across jurisdictions. Provincial-level policies should require a comprehensive Individual Care Plan for each child with type 1 diabetes, as well as designated staff trained to provide support that matches a child's needs, autonomy and developmental level.
Children under five years old are the fastest growing group of new diagnoses of type 1 diabetes, so managing the condition in schools will become increasingly common. It is easier, safer and wiser to prevent a diabetes-related emergency than to manage one. Ontario already has two pieces of legislation named for children with life-threatening conditions who died at school. No one wants to see a third.
Elizabeth Moreau is Director of Communications and Knowledge Translation at the Canadian Paediatric Society in Ottawa. She has two children, including a daughter who was diagnosed with type 1 diabetes in 2013.
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