Making it a better school year

back to school with diabetes

Going back to school is a daunting task at the best of times.

There are new clothes that they will outgrow next month.  School supplies will be purchased that will not quite match the requirements of their particular teacher but you won’t know that until after the first day. You will have to pay for three new pairs of running shoes because they can’t wear street shoes in the classroom and they can’t wear classroom shoes in the gym.

Those chores are stressful enough but if you have a child with diabetes, that is only the beginning of the worries. Next is what should I  put in their diabetes kit for school? Where will that kit be kept? What sort of information should we provide for the teacher this year? What can I expect the teachers to do? Will they inject my child? Will they monitor his testing? What if she goes low? Will anyone care? How will we cope with the bus? Will they give out treats in school? What will happen when my child is high/low during an exam?

The list of worries for a parent of a child with diabetes going to school goes on and on. I went through these stresses when my son was in preschool until his very last day of high school. It doesn’t get any easier.  The worries simply change.  In kindergarten you wonder who will help with her testing.  In their pre-teen years, you wonder if the teacher will help remind him to test.  In their teens, you worry that the teacher will think that she is playing with her phone when she tests.

Despite the fact that the worry is still there, I will tell you that the systems have improved.  We now have provinces (see British Columbia, Quebec, New Brunswick and Newfoundland and Labrador) with some sort of guidelines for dealing with children with diabetes entering their schools.  While there is often a need to specialize plans and meet with the school staff for your particular child’s needs, this is a huge leap forward from provinces with no basic guidelines.

In other provinces, where provincial policies have not yet been agreed upon, most boards offer individual policies that range from talking about diabetes as a medical condition in school to dealing with specific diabetes related issues.

For those living in the US, you don’t have to worry about state policies or even specific school board policies.  All children with diabetes are covered by the American Disabilities Act and as long as they are in a public school, should have a 504 plan in place dictating their diabetes care.

No matter where you live, it is important that you keep an open and honest dialogue going with your child’s school.  The majority of teachers in the education system are there because they truly care for kids.  This means that they want to help you in any way that they can.  Ensure that you have a meeting with staff to discuss your child’s needs, what you can do to help make things better and the role that you expect educators to play.  Remember that they are just people who will also be overwhelmed by diabetes care. Make things as simple as possible and check to see if your area has access to a nurse to assist with younger children’s care.

As your child grows and becomes more independent, it is important for teachers to understand the behaviours of high and low blood glucose levels.  You don’t want them suspecting that your child is drunk when they are low.  You also don’t want an altercation to take place because they are high.

Going back to school can be overwhelming.  Going back to school with a child with diabetes seem worse.  Make sure that you…

~plan ahead

~set meetings with school staff

~create 504 or individual care plans were available

~leave information for supply teachers

~be available for questions and concerns that will arise during the year

~enjoy another successful year for your child…the time really does go by in a flash!


For further reference see:

Going to school with diabetes 

Things to Remember when sending a Child With Diabetes To School

School Bill of Rights for Every Child with Diabetes

CDA Position statement on Students Living with Diabetes at School

JDRF Children with diabetes in school

Three Things that Raise My Dander

Diabetes Blog Week
Its Diabetes Blog week once again and I am so excited to be able to participate once again!  Today’s topic comes for Kim of Texting my Pancreas and asks us to discuss diabetes issues that get us really fired up!

Since I began my website many years ago, the issues that I have been passionate about have grown but have always retained one common thread–improving the lives of people living with diabetes.  There have been some successes and there is still a long way to go but watching the diabetes community come together and create change has been the best part of the journey.

The first issue that got my dander up was the inequity I saw years ago in the way people with diabetes were treated when it came to the Disability Tax Credit.  As I worked on this issue, I saw that those who were approved for the credit were people who were able to stand up to the government and were willing to fight for this issue. If you were uncertain or did not know how to take on this battle, you would be denied the credit while your neighbor was approved.  There seemed to be no other logic behind how this credit was applied to people living with diabetes.
With a lot of help from other people living with diabetes and a fabulous mentor, I was able to see this issue change dramatically. Fairness was obtained and change happened to the legislation surrounding this issue. I was very proud of all the works that was done here but there were still more issues to tackle.

As I learned about diabetes and became more involved in the world of advocacy, I came to realize how difficult it was to get an insulin pump if you didn’t have the very best insurance coverage.  Once again I was outraged.  Why should it matter what sort of job you have or where you work to get the best possible care for your diabetes?

Since I first began dealing with this issue, things have changed.  Most provinces in Canada now offer provincial health care coverage for insulin pumps and supplies for all children under the age of 18.  That was great but what about older children who are just starting out in the workforce? Some provinces decided to give these young adults until age 25 to get better insurance…some provinces didn’t.  Today, I continue to work with others to see that all people living with diabetes have access to the best devices available to manage their diabetes care regardless of age. This means that I would like all governments to cover insulin pumps, supplies and Continuous Glucose Monitors for people with diabetes regardless of age.  This will happen in time. I am confident.

No matter what your age or where you live, you deserve access to the very best in medical care.  It is important for governments (and insurance companies) to understand the broad sweeping benefits that come from best care practices. If a person with diabetes is able to maintain their bg control to a close to normal range and they are able to anticipate highs and lows with the aid of CGM technology they are better able to perform at work (which means less down time and more money paid to the government in terms of personal tax), they are less likely to be in the hospital (costing the government money), and more likely to have a better overall life satisfaction which in turn further leads to increased productivity and once again an increase in taxes paid to governments. The cost outlay is far outweighed by the benefits to the system as a whole.

At the moment, I live in a province that covers insulin pumps for people with Type 1 diabetes until they reach the age of 25. It does not cover CGM technology.  I have less than 9 years to advocate for increased funding to cover all people with diabetes regardless of age.  In 9 years my own son will be in the position of having to make very serious and real choices about his diabetes care. We will see this change–for him and for all of the other adults struggling to maintain their health despite the heavy financial costs.

Because my son is still in school and has had diabetes since before he went to school, the third issue that I am passionate about is that of children with diabetes in schools. This issue has seen major changes since I first began talking about it over 10 years ago.  In BC, we have seen the power of grassroots parent organizations who have pressured the government into changing its policy on children with diabetes in schools.  I have seen many more individual boards and provinces begin to seriously look at the issue of protecting the rights of children with diabetes in schools.

Once again, this is an issue that many parents and children are not able to stand up and voice their concerns about themselves. I felt that it was therefore my job to help them.  I would (and do) speak to parents on how best to tackle their schools and their issues. I work with boards to help them understand what needs to be done to create change that is fair and just to all parties involved. This is a very complex issue here in Canada. Our children are not protected by a disabilities act. They are protected by the voices of their parents and other concerned adults…but these voices are powerful and making a difference.

Advocacy has always been something that I am very passionate about. I have felt a strong need to stand up for those who may not be able to stand up for themselves.  I have worked for the past 14 years to ensure that people living with diabetes are all treated fairly with equal access to education, medical devices and supplies.  This is a long road.  It has seen many battles won and I am proud to be able to continue fighting the war along side many incredible people.


Unsafe at School Reaches BC Medical Journal

Last week, the BC Medical Journal published an article called “Unsafe at School: Advocating for Children with Type 1 diabetes.”  It is my understanding that the document was created by parents and endorsed by many in the medical community.  It was a huge feat to have this reach such a publication.  It added weight to the argument that children with diabetes in schools do have special needs based on their medical condition. Parents are not asking for help for their children with diabetes in schools just because they are too lazy to take time off work to run to schools.  There are many more concerns here and those concerns are justified.

The article does a great job of highlighting the real impact of hyperglycemia on learning. They note that extended exposure to hyperglycemia can have a long term impact on cognitive performance.  The authors further state that because some parents are not able to get to school themselves nor are they able to get a friend or relative to go to the school to inject their child, they are put on inferior insulin regimens and the children are often forced to run high during school hours.  As previously noted, this means that the student’s ability to learn in the afternoon session is severely reduced. 

This problem could be alleviated if aides or other school staff were allowed to assist with injections or boluses.  Sadly, the article states that the BC Nursing Support Services feel that such people are not qualified to do these tasks. Personally this is political rhetoric.  If this was the case, that a teacher or aide could not be trained to inject insulin or deal with glucagon, then why are we as parents, not sent home with a nurse when we leave the hospital with our child? Parents of children with diabetes come from all walks of life and all education levels and yet everyone of us is required to test, inject, and manage glucagon if the need arises. We are trained by diabetes educators and if we do not use that training we are charge with criminal negligence regarding the safety of our children. I have spoken with educator and classes of students wanting to work in the school system, most are very willing to learn and be taught to assist their students to the best of their abilities.  

I do have two small issues with this article however, but let me preface first that I know how hard it is to get consensus and that some points have to be made at the sacrifice of others.  It can often be necessary to use extremes to get the attention of those most important.

My first concern is the argument of children with diabetes being labelled as disabled.  I was recently made aware that the Human Rights Commission of Canada has chosen to recognize diabetes as a disability.  This is a very sticky area.  Many people with diabetes work very hard to show that there is nothing that they cannot do.  They have fought various organizations to prove that they are just as capable of flying planes and working in the protective services as anyone else.  They do not see diabetes as a disability.  My son would fall under this category of people.

Other people feel that someone with diabetes is disabled. They have a disabled pancreas.  The need to have an external source of insulin, to test blood and carry glucagon is not normal. The fact that a person with diabetes cannot always participate in activities because of hyper- or hypoglycemia, in some people’s mind makes them disabled.

In the US, this concept is widely accepted.  In the US, people with diabetes are considered disabled and protected both at work and in school by the American Disabilities Act.  This allows students to receive, on paper at least, protection of their rights to inject, have assistance, and be exempt from writing exams when out of range.  Sadly, schools still fail to provide their students with the proper protections, often discourage parents from implementing these plans, and are looking to remove school nurses from some schools leaving young children with diabetes in a similar situation to our own children here in Canada.

There is no easy answer.  We do need protection for our children.  We do need standard policies in place–not just for our children but for the educators as well. Staff need to understand what diabetes is.  They need to understand how each child is unique in their needs.  They need to understand that while the needs of a child with diabetes change over the years, there is a need for assistance from pre-kindergarten all the way up to grade 12 and beyond. 

This was my second issue with the article.  I wished that there had been a way to expand their focus a little more.  A child who is five may not be able to inject themselves or understand how to bolus but a child of 15 may not be able to see his/her meter when are high and properly handle their diabetes care.  A child of eight may do poorly on an afternoon test because their blood sugar was high but a child of 16 may fail a provincial exam because they were also high but no one noted their blood glucose levels and waited for them to be in range to have them take that test.  Finally, a child who is 7 may not yet recognize when he/she is low and will require an adult to keep an eye out for them when the stumble on the playground and feel out of sorts.  A child of 17 needs the same protection when they stumble in the halls because they are low but are mistakenly sent to the Principal’s office for being intoxicated in school. The rights and safety of children of all ages must be protected. They all can be in dangerous situations just because they happen to have Type 1 diabetes.

I applaud the initiative and the passion of these authors. I truly hope that the legitimacy that this article gives to some of the issues children with diabetes in schools face help students not just in BC but throughout Canada.  Our concerns are real.  Diabetes is deadly.  Treatment methods are changing and schools must be able to accommodate the needs of our students, allowing them to use the best possible treatment methods in school so that they can be at their very best to learn while in the classroom.