Sending a child with Type 1 Diabetes to school is a huge challenge in the life of a family touched by diabetes.
If you are the parent or caretaker of a young child in school with diabetes, you will understand the anxiety and even grief that comes with the enormous faith you must have in your child’s school, school nurse, teachers and staff to carefully oversee your child’s wellbeing.
Rest Assured: Concern About Diabetes At School Is Normal
As the mom of a school-aged son with Type 1, I can tell you that this worry never goes away (however, it does get better).
When your child has a chronic, potentially life-threatening condition, you never want to let them out of your sight.
Yet we must let them go, let them be normal kids with normal lives as much as possible, who learn and play with their friends and aren’t constantly thinking of themselves as a chronic condition.
So how do you send your child with Type 1 Diabetes to school without losing the plot, worrying yourself into lunacy or creating a deep sense of fear in your child?
These are 3 things every parent or caretaker of a school aged child with Type 1 Diabetes should know.
1. Schools are often unprepared to support a child with diabetes.
In my work as a diabetes advocate, wellness coach and diabetes mentor, I get this question a lot:
What if my child’s school is unsupportive?
I can’t even begin to describe some of the heartbreaking challenges that some parents face when their child’s school does not want to listen. It’s beyond my comprehension.
We’ve been fortunate. Since my son’s T1D diagnosis over 10 years ago, the nursery, elementary and primary schools that he has attended have been supportive most of the time. I am all too aware that this may not be the case at your child’s school.
My best advice is to persist. You have every right to be a pushy parent when it comes to something as important as your child’s life. This is non-negotiable. If you are coming up against resistance, do not give up. Keep escalating the situation and keep speaking with others who can help you. Keep telling your story.
You should also know your child’s legal rights (see below) in your area, and do your part in educating the school about what needs to happen to keep your child safe.
2. Children With Diabetes Have Legal Rights
In most countries, there are laws that govern the treatment of a person with a chronic condition. These sometimes fall under laws about disabilities. In some cases these are specific to Type 1 Diabetes.
It’s important to know the laws that govern the rights of children with diabetes in your country, city or state. Find the documentation. Store it in your files so you can access it readily.
I also recommend that if there isn’t an easy way to access and share the documentation around your child’s legal rights as a person with diabetes, include this information in your Diabetes Medical Management Plan.
Children with diabetes should have the right to:
• access diabetes supplies and treatment
• use technology for their diabetes (i.e. have a phone nearby to share their blood sugar via the apps that exist today)
• use the toilet and drink water as needed (for high blood sugar)
• retake exams if blood sugars are off during exam time
• miss school due to illness or doctor’s appointments
• get support from staff/teachers trained in diabetes
• be included and not discriminated against because of diabetes
• confidentiality.
And you as parent or caretaker have the right to insist that these rights are honored at all times.
3. If You Didn’t Write It Down, It Didn’t Happen!
Documenting everything about your child’s day-to-day health is such an important habit to cultivate.
If you’re not already doing this, start right now. Get a dedicated notebook to record it all. However you decide to do it, the important thing is to write it down!
Always include the day, date and time in your notes.
With my 20+ years of experience in healthcare management, I knew from the start the importance of recording everything and having strong systems to track my son’s health. (For years I used flimsy paper notebooks that kept falling apart – now we use My Diabetes School Journal.)
I can’t tell you how many times keeping strong records has made a difference in managing my son’s diabetes.
Things to track:
• Blood sugars – upon arrival, before snack, after snack, before lunch, before physical activity, before tests and exams, before school trips
• Food / carbohydrates eaten
• Insulin administered
• Treatment for high or low blood sugar
• Any additional treatment that was given
• Anything unusual or irregular (food, mood, symptoms, special events such as parties).
Keep it all in one place, in your dedicated notebook or journal.
Get The Ultimate Type 1 Diabetes School Game Plan
If you need more guidance in managing your child’s diabetes at school, you’ve come to the right place!
I’ve gathered together all the knowledge and resources you need to work with your school to help support and oversee the health and care of your child with Type 1 Diabetes while they are at school.
This online course is self-paced, delivered via step-by-step videos and includes printable guides, templates and links across the internet for finding more information relevant to your country.
I (Pam Durant) will be your instructor, sharing everything I’ve learned as:
• The mom of a school-aged son with Type 1 Diabetes (10 years+)
• A former healthcare professional (20 years+ in healthcare management, consulting and education)
• A qualified wellness and lifestyle coach (I’m a certified Wellcoach® with a special focus on coaching people with diabetes and their caretakers)
• A diabetes advocate and mentor, embodied in my work as Founder of DiapointME.
The Ultimate T1D School Game Plan is now open for enrolment.
It’s designed for:
• Parents of children who are newly diagnosed with Type 1 Diabetes.
• Parents who have a child with Type 1 Diabetes already in school who want more structure around the management of their child’s diabetes at school.
• Parents who are frustrated with how their child’s Type 1 Diabetes is managed at school.
You’ll get instant, lifetime access as soon as you register. I’d love to share all of this knowledge with you, so that you can feel confident every day when you send your child with Type 1 Diabetes to school.
5 Essentials for Managing Type 1 Diabetes at School
Relieve some of the anxiety you feel whenever your child with Type 1 Diabetes heads to school for the day.
You'll find tips on educating the teacher and nurse, making emergency snack boxes, traveling on the school bus and more.
By downloading this guide, you'll have the option be added to the DiapointME mailing list. You are also agreeing to our Privacy Policy.
By and large these arguments are more about education than neglect. Having sat in these meetings as an administrator I also have some good observations.
1. Be nice. Do not come to school to nail someone, that never works.
2. Listen, Listen before you react, then repeat what you thought you heard before you speak.
3. Explain what you need but do not start by saying that your lawyer said, remember schools have infinite ability to litigate, if you want to get into court it is a long run approach.
4. Remember the ADA in almost every state has legal assistance for parents of kids who might need help to figure out how to proceed.
5. Remember your child is one of several in the school, yes he/she can be accommodated but likely not exactly like you would do at home.
6. Schools as well as yourself should want your child to accept more self care options as they grow older. If a parent wants their child to have blood sugar every two hours, it likely will not happen all the time.
7. Mistakes happen, we will make them cut the school some slack and they will cut you some as well. , and
8. Be sure to not get in the middle of half truths. Sometimes kids shade the truth to play adults. Of course believe your child, but also form your own opinions.
Also and the last one.
School needs to be fun. Let school be fun for your child.
Thank you so much for this well thought out comment. The points that you have highlighted are so very important, and I am really happy to hear from someone who has been on the other side of this discussion. These points highlight why it is absolutely critical for parents to understand everything their child requires and that they present that in an organized way so they can have an open dialogue with the school. Not every country is as advanced as the US with an ADA-like support. Nor are they as “advanced” in the legal area where everything is a potential law suit. Parents ready for immediate legal action before communication is something that I see unique to the US environment. It definitely doesn’t have to be that way. I meet many parents all over the world whose children with Type 1 Diabetes are discriminated against at school or denied entry to schools. Things like children accepted to schools and then suddenly the school changes its mind, or say that they made an “error”. Or they ask parents to hire a separate nurse to care for their child. And while I absolutely agree that it has everything to do with education about diabetes, if a school is not open to it, it becomes very challenging. My son is now blessed to be at a school where everyone is in synch with each other and working as a team. He is now doing most of his care, too. At a previous school, an administrator once openly told me that if I did not like their standard of care, I could leave. So we did. This was at a meeting where I was prepared to have a conversation and give constructive feedback based on global minimum standards of school nursing care – that particular school’s nurses were overwhelmed with 1000s of students and there many errors happening as a result of the work load. We live in a country where everyone has to attend a private school. So we have choices. Not everyone does. I will say that it is so refreshing to have a school and administrators who want to meet all parents, regardless of medical condition, half way in a dialogue about their child’s health. As a result of that, my son has had one of the most fun school years yet!