Sending your child back to school after their diabetes diagnosis can be overwhelming and emotional. You’re not only putting your child in someone else’s hands, you’re putting your medically complicated child in someone else’s hands. And often, they don’t know the first thing about T1D. How on Earth can you prepare for that situation? Whether it’s a new diagnosis, a new school, or you just need to make sure you’ve checked all the boxes, here’s a T1D back-to-school guide that will help you cover all the bases.
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Your child and their diabetes supplies:
Medic Alert Gear
It’s so important that every staff member and adult in the school knows that your child’s devices are medical equipment. If your child uses a glucometer, remote for bolusing, or a CGM wand or receiver, these devices should be labeled as medical equipment. These T1D stickers are great to put on your child’s medical devices. There are some really great medical alert keychains for your child’s “d-bag” and backpack as well.
Lots of schools have a “no cell phones” policy. I’ll talk about how to get around that in a bit, but it can be really helpful to have a “medical use” lock screen on your child’s phone. That way, if there’s a substitute teacher or someone else who is unfamiliar with your child and their T1D, they can easily see that your child’s phone isn’t just an ordinary cell phone.
Have your child wear a medic alert bracelet. This is an important habit to get into. If something happens to your child at school (or anywhere when you aren’t with them) a medic alert bracelet will notify anyone who is helping them that they have T1D. There are so many to choose from. You can get feminine bracelets, sporty bracelets, simple silicone ones… pretty much any kind of bracelet you can imagine, there’s a medic alert bracelet in that style.
Supply bag
There are some things that should ALWAYS be with a person who has T1D. Which means your child needs something to carry it all in. As your child grows, their diabetes supply bag also tends to grow up.
Younger children often use a spi-belt or fanny pack-style waistband to carry insulin pumps, CGM receivers, phones, and a couple of low treatments.
As they get older, a “fanny pack” isn’t very cool. A couple of favorite supply bags among teens and pre-teens are sling bags and the slightly expensive, but ever-popular and stylish Myabetic Diabetes Backpacks.
Related: What’s in your D-bag? The Complete List of Supplies for your Pancreas in a Bag
Low Treatment kits
Even though your child should have low treatments in their d-bag, it’s a good idea to stash low treatment kits in certain parts of the school.
For elementary school, since your child is usually in the same classroom for most of the day, you could keep one in the class and one in the office.
When your child gets older and starts going to several classes each day, you might want to have a low treatment kit in each class. Let’s face it, tweens and teens can be very forgetful and might not refill their low treatments after using them. Having several low treatment kits around the school can come in handy.
Most people use something about the size of this pencil case for low treatment kits. It doesn’t need a lot in it. Just enough fast-acting carbs to treat a few lows and a simple one-page printout about low symptoms, treating lows, and monitoring afterward.
Preparing your child to advocate for themselves at school
Yes, your child will have some sort of care plan and possibly an IEP. Yes, their teachers and other school staff will be taught about T1D and what is required. But still, your child may end up in situations where an authority figure tells them “no” when they need to take care of their diabetes.
Maybe it’s a substitute teacher who doesn’t know that your child has T1D. Or a staff member who doesn’t understand how urgent it is to treat low blood sugars. Maybe they’ll get lucky and this will never come up. But it’s best to have them prepared just in case.
Give your child a list of things that are ok to do… even if the teacher or another adult is telling them not to.
This list might include:
- Treating a low blood sugar number
- Going to the washroom as needed
- Drinking water as needed
- Giving insulin as and where needed
- Using their phone.
Yes, even if your school has a “no cell phone” policy. Again, for children with T1D, a cell phone is a medical device. It might be required for their CGM or insulin pump to work properly. Even if it isn’t, they are allowed to text or call you if they need help making dosing or medical decisions.
Be clear with your child. Tell them that if someone tells them they cannot do these things, they can do them anyway. Let your child know that you will not be angry with them and they will not get in trouble.
Also, give the teacher and principal a heads up that you’re doing this. Open, healthy communication is key when dealing with T1D and school.
Emergency kits:
Check with your school and see if they require extra supplies for things like personal earthquake kits. If there is an emergency, you don’t want your child’s supplies to be left in the building when everyone evacuates.
In emergencies, your child may be out on the school field for several hours with school staff. Make sure that you have all of the supplies that would be necessary for that situation readily available in one easy-to-grab kit.
Confirm who will be in charge of the emergency kit at school. Is it someone in the school office? The nurse? Your child’s teacher? And always have a backup person in case your main person is not at school.
Make sure your child knows what they’re supposed to grab and who they’re supposed to go to if there is an emergency.
Talking to School Staff:
Your child’s teachers, principal, school staff, and school nurse (if you have one) are all becoming a part of your diabetes team.
Often, you will have to initiate discussions about T1D with school staff. Do your best to communicate effectively, be respectful, and be reasonable. There’s no need to march into the school in “mama bear” mode acting like the school staff is trying to harm your child. Generally, people want to help keep your child safe.
Provide easy to access, easy to read information
Remember what it was like getting information about T1D when your child was diagnosed. Think about how you felt. For most of us, it was scary and overwhelming. If you can avoid it, it’s best not to make school staff feel scared and overwhelmed as well.
You’re a pro at dealing with your child’s T1D now, but they’re new to it. Carefully consider which information the school staff needs to have, like how to recognize and treat lows, and which information they don’t really need, like how often to do night-time bg checks.
Stick to information that will be necessary for school hours.
A small binder with a few printouts, or even a couple of posters should do the trick. There’s a lot of information when it comes to T1D, but the important stuff can be condensed into a few pages. You need to find the balance between expressing how deadly T1D can be but at the same time not scare school staff so much that they’re expecting your child to pass out in the middle of class.
Meetings and accommodations:
While we don’t want to overwhelm anyone, there are some things that need to be discussed and sorted out before school starts.
When you have meetings about your child’s T1D care at school, hope for the best but expect the worst. These meetings tend to have you and several school staff members. If your school staff disagrees with what you’re trying to set up, it can be easy for them to band together and make you feel like you’re getting railroaded.
Tips for meetings with school staff:
- Know your rights. Different places have different rules, regulations, and standards. Make sure you’re familiar with how things work in your area before you go to a meeting to discuss your child’s care.
- Bring someone with you. Your partner, a friend, another d-parent, anyone. Having someone in the meeting who is guaranteed to be in your corner can be really helpful. Even if they don’t add anything to the conversation.
- Take notes. Meticulous notes. Ask for everyone’s names, how to spell them, what their title is, and what their role is when it comes to your child’s care. If someone says something that doesn’t sound right to you, write down exactly what was said and who said it. Tell everyone else in the meeting that this is what you’re doing. “Just a minute, I want to make sure I write down exactly what you just said so that I don’t get it mixed up later. How do you spell your name?”
- Get everything in writing. Whether it’s a care plan or IEP or just details that you confirm in an email after the meeting. Make sure it’s written down somewhere and that you have access to it.
- Connect with other d-parents and advocates in your area. This can be done through JDRF, your diabetes clinic, or even social media. There are several Canadian provinces that have Facebook groups specifically to discuss T1D and school. These people can help you figure out what to ask for, let you know if your school is being reasonable or not, and help you navigate any red tape that you might come across while advocating for your child.
Medical care plans/ IEPs/ 504 plans
Depending on where you live, and how independent your child is, the school plan will vary.
In the United States, students with T1D should have a 504 plan in place. This is something that is specific to the US and is not used in other countries. It refers to section 504 of the Rehabilitation Act of 1973. It guarantees certain rights to people with disabilities (yes, legally speaking, T1D is a disability).
Medical care plans are generally for students who need assistance with their T1D care. In the majority of Canada, school staff will not administer insulin or do finger pokes and there are no school nurses to do that job either. So your child’s medical care plan will look different depending on which province you’re in.
IEPs (Individualized Education Plans) are for the educational side of things. Students may or may not require an IEP. This is where you would include educational items such as rescheduling tests if your child’s bg is too high or too low to focus properly.
As these plans vary so much based on location, it’s best to chat with your diabetes team, local JDRF, or other parents of T1D children in your area to figure out what is required for your situation.
Accommodations:
There are several things that every child with T1D requires. Here’s a list of common accommodations for type 1 students:
- They can check and treat blood glucose whenever and wherever required. No need to leave the class or go to the office.
- Their cell phone is a medical device and they are allowed to have it on them at all times. Yes, even if the school has a no cell phone policy.
- They are allowed water whenever and wherever it’s needed. High blood glucose makes a person with T1D thirsty. The use of CGM/FGM systems requires proper hydration. Water can also help to flush glucose and ketones.
- They can use the washroom whenever needed. High blood glucose also makes a person with T1D need to pee more frequently.
- Accommodations for tests if bg is too high or too low. High and low blood glucose impairs the ability to focus and think. Therefore, doing a test while bg is out of range puts T1D students at a disadvantage.
- They may need to eat at times that are not usual snack/ lunch times. This is either to treat lows or to prepare for activity such as gym class.
- They have to be allowed to finish what they’re eating. It doesn’t matter if snack or lunch time is over. If your child bolused for food, they need to eat it. It doesn’t get thrown out or packed away for later.
These are just the basics. Your child may need more accommodations. Or maybe they don’t need some that are on this list. Remember that accommodations can be adjusted as needed. If your child’s needs change, don’t wait until the next scheduled appointment or the following school year to update your child’s care plan and IEP with the school.
Talking to the class:
This is something that you should discuss with your child. But I’ve always found it extremely helpful to have a quick chat with the class about T1D.
Children are naturally curious. If they see a classmate poking their finger, eating in the middle of class time, or injecting insulin, they’re going to want to know what’s going on.
Of course, if your child wants to keep it private, that’s up to them. But they’re likely going to get questions either way.
Here’s what we do every year for Jordan’s class:
Ever since he started kindergarten, I have a quick chat with the teacher and ask them if they’d be ok with me doing a short talk about T1D with their class. They’ve always been quite keen on it.
I send a letter home to parents to let them know that we’ll be talking about T1D. It has some basics like symptoms and an outline of what we’re going to be discussing, just in case their child has questions afterward. I also invite parents to come for the discussion.
I keep it short and sweet. What might they see or hear in class that is different from what they’re used to? That’s what we talk about. Then a quick look at his glucometer and insulin pump/ CGM. Then I open it up for questions.
The whole thing takes about half an hour. The teachers often have a bunch of questions too. I love this. It shows me that they’re understanding and engaged.
If you don’t want to do a presentation:
I get it, really I do. I can’t even tell you how nervous I was to talk to a class full of kindergarteners!
Maybe talking to the class isn’t your thing. Or your child doesn’t want you to come in and talk about diabetes.
If you still want to provide some information, there are great children’s books that you could send for the teacher to read at storytime. Coco Goes Back to School is a great one.
School buses and before and after school care:
Transitions like daycare and using the school bus can get a little tricky. When you add too many adults into the mix, sometimes everyone assumes another person is taking care of things. Maybe the bus driver after school assumes that school staff are handing your child over at a good bg level so they don’t think about it. Maybe school staff won’t think to check your child’s bg upon arrival at school because they expect that the before school care staff have taken care of things.
Make sure everyone who is going to be responsible for your child during the day knows exactly what they’re responsible for.
Tips for the school bus:
Let the bus driver know that a type 1 diabetic child is on their bus. Give them a rundown of what low blood sugar looks like, that it’s an emergency if it occurs, and how to treat it if needed.
They also need to know that your child may have to eat or check their phone during the bus ride. Many school buses don’t usually allow those things.
Do what you can to set your child up with a “buddy”. If there’s another child who goes to the same bus stop and rides the bus with your child, see if the parents are ok with you explaining a bit about T1D to their child. Sometimes it helps if our kids have a friend who will stick up for them and ask an adult for help when it’s needed.
If you want school staff to check bg when your child arrives at school and before they go to the bus after school, be clear about your expectations and add it to your child’s care plan. You might also want staff to double-check that your child has their d-bag and any necessary diabetes supplies with them after school. I know from experience how terrible it is to go to bolus for dinner, only to realize your child’s PDM is still at school… which is now closed for the night or weekend.
Tips for before and after school care:
Know what your daycare is willing to do. Depending on where you live, they might not be required to do things like administer insulin. If that’s the case, you might want to add an afternoon bg check near the end of the school day, just in case your child needs a correction before going to daycare.
If your child is going from home to daycare to school to daycare to home again, it’s a good idea to have a small notebook or logbook to keep track of bg numbers, when insulin was given, and how much was given. This can really help you see any trends and point out things that may need further education or clarification.
Have patience
Remember, everyone is trying their best and everyone makes mistakes. As parents, we’ve all missed a bolus, overbolused, mixed up long-acting and short-acting insulins… the list goes on. If things like that happen at school from time to time, explain the importance of doing it correctly, but also give your school staff some grace. They’re human too and they’ll make the same mistakes that we all make.
If the same mistake is made repeatedly, offer to provide additional training and explain why these mistakes can be dangerous or even deadly.
But if someone is making mistakes and doesn’t seem receptive to additional education and training, request a replacement immediately. Someone who isn’t willing to learn can cause a lot of problems with your child’s care. As I said, the school staff are now a part of your diabetes team. Make sure they’re a helpful part of that team.
Helpful Resources:
Information on 504 plans: Parents Reveal: The best question I asked at our 504 plan meeting
- Diabetes At School is a Canadian website with lots of information for school staff as well as fillable care plans for students.
- Parents Reveal: The Best Question I asked at our 504 Plan Meeting this article from T1 Everyday Magic has questions that real T1D parents asked at their 504 meetings. There are also links to articles about what a 504 plan is and how to prep for 504 plan meetings.
- Talk to your local JDRF representitive if you’re having trouble with school and T1D. They’ll often be able to help or at least point you towards someone else who can.
- What is Type 1 Diabetes is a short, easy to understand video from Diabetes UK. It’s an animated video that explains what T1D is in a way that children can enjoy. This is a great resource to send to your child’s teacher to share with the class.
- T1D Mod Squad is an American non-profit organization that is run by parents of type 1 diabetic children. They have a whole bunch of printables for back to school as well as information on 504 plans.
I know there’s a lot to prepare for when your child with diabetes goes back to school. Hopefully, this guide has helped you sort out what you need to prepare and who you need to talk to.
~ Leah
Do you feel ready for back to school? Do you have any tips that I missed? Comment below to share your thoughts with other d-parents!
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