It’s that time of year. Whether you are 1) the parent of a newly diagnosed school-aged child, 2) your child was diagnosed very early on in life but this is their first school experience, or 3) you’ve already sent your type 1 child to school before, but are heading into a new school year- back-to-school can be a very stressful time. But, it doesn’t have to be!
I believe there are 3 components to a creating a good relationship with the school and personnel that will be helping your child manage their diabetes while at school: preparation, education and communication. This post will help you lay the groundwork to achieve these 3 things.
There were of course so many things I thought about after we received C’s diagnosis just shy of his 2nd birthday, but even way back then, one of the biggest hurdles of all to me was the thought of sending him to school. I was a stay-at-home mom, so school was the first time I would be entrusting him in the care of someone else. There were so many times I asked myself how on earth I was going to be able to let someone else manage his diabetes. Even though in so many ways that seems like it was a lifetime ago, the fear and worry I had about sending him to school remains seared in my memory today. We were able to slowly ease into it, with preschool and other small functions he was involved in that forced us to loosen our grip (sports, camps, etc.), but quite honestly sending him off to Kindergarten remains high on my list of hardest things I’ve ever done.
Shipping your kiddo off for the first time is hard no matter what, and adding in a chronic health condition can be enough to send someone into a spiral. However, for you moms that are getting ready to send your type 1 kiddo to school for the first time, I am here to tell you that 3 full school years later, school has been nothing but a positive experience, and we have a great relationship with the school and everyone that cares for him. And the good news is that you can have this too! Here’s how:
Contact the School: If this is your first year sending them to school, you should start by contacting the school and letting them know your type 1 child will be starting there. Ideally, you would have made this call in the spring before they start school (Kindergarten roundup is a good time to have this conversation), just so that it can be taken into consideration when they’re figuring out class placement, etc. During that call you can get a feel for who will primarily be in charge of your child’s diabetes management. It seems that this widely varies from school to school. At my son’s school his teacher has really only been in charge of helping him remember when to go down to the office for his scheduled blood sugar checks, and to know what to look for if he seems to be acting “off.” While the teachers have for sure been a very important component to his care, all of his actual treatment happens in the nurse’s office. The nurse and the school secretaries (only if the nurse is not there) are the only ones that help him check his blood sugar, help him operate his pump (if necessary), or give him a snack or juice when he is low. I remember it worried me at first when I heard the teacher’s would have such little involvement, but the whole setup has really worked for us. And now that we’ve done this a few times, I realize teachers have enough to worry about with a classroom full of kids, probably many of whom also need special care of some sort. Putting them in charge of the bulk of diabetes management might prove to be way too much for one person. We have the added benefit that one of C’s secretaries has a type 1 child (grown) of her own. I imagine there are a lot of other people out there who will find that someone at the school has a diabetes connection that you can also lean on, as well. But if not, have no fear, because good communication will solve everything.
Contact Your Diabetes Care Team: At your next endocrinologist appointment ask your diabetes management team to help create a medical management plan. This is basically just doctor orders outlining diabetes management information specific to your child. You can get more detailed with in your 504 plan, but this is a good place to start. Bring this paper with you when you meet with the school.
Set up a Meeting: When C started Kindergarten we touched base with the school in the spring and they answered a lot of basic questions for us. Honestly, just making that first call started to ease a lot of my fears, and just helped me to get a nice picture of just how everything would work in a day. Don’t wait to make this call, as it can be very difficult to reach the individuals you need if it’s the middle of summer.
Now in subsequent years, I like to reach out about a week before school starts. Any sooner than this and teacher’s are still enjoying summer break themselves, and in our case, class placement information is still unknown. You also want the information to be fresh in their minds, so meeting as close to the start of the new year is ideal, IMO.
Create a 504 Plan: In addition to you medical management plan, you will likely want to create a 504 plan. In short, this is essentially a very detailed plan of how your child’s diabetes will be managed while at school. Having a 504 plan in place requires that your child have the same access to education as other children.
Here is a great link to sample 504 plans by age/insulin regimen (for kids using injections and pumps): childrenwithdiabetes.com. This post also has a lot of great things to consider adding to your 504 plan: d-mom.com.
Create a Supply Box: I recommend purchasing a medium sized plastic tote with a lid. On the outside of the box put a current photo of your child, your child’s name and two phone numbers where you can be reached the quickest. Your box should contain anything your child may need to manage diabetes for the day. This forum has a great list of things you may want to include in your supply box: forums.childrenwithdiabetes.com. Your boxes contents will vary depending on if your child does injections of if they are on an insulin pump, etc. This is what we have in C’s box:
- Juice boxes- we include two sizes of juice boxes and give parameters for when to give which one. The big ones are only used to treat severe lows.
- Glucose tabs- we like GlucoLift.
- Snacks – this year we have only included these bars for his snack. We built a snack into his morning because he has P.E., and recess in the morning and eats about an hour later than he has in previous years.
- Blood glucose meter
- Testing strips
- Glucagon Kit
Meet with School Staff: When we meet with the school we typically meet with the nurse and C’s new teacher for the year. Ask that anyone who will be caring for your child during a typical day be at this meeting. We have always brought C with us to these meetings. We feel it’s important to get him on the same page and voice any questions or concerns he has as we talk through everything.
Start by going over your 504 plan and this will cover most of what needs to be discussed, or will at least prompt discussion of most topics. Go over everything in your supply box and explain what each item is (especially if this is their first experience with diabetes). Demonstrate how to use their blood glucose meter, administer injections or operate the pump, and how to use the glucagon kit. Cheat sheets for how to operate the pump may be helpful when they’re starting out. Depending on the brand of pump you use, you may be able to find printables of the most common pump functions (correcting a high, or giving a food bolus) on their particular company’s website.
If this is the first time your child is going to school this meeting will be pretty long. If it’s not your first rodeo this meeting will basically just be meeting with your child’s new teacher and just re-hashing the plan from the previous year and catching everyone up to speed on any changes that have been made (if any) over the summer.
Make sure you leave the meeting feeling like you have addressed all of your thoughts/concerns. You will likely get home and realize there was something you forgot to mention (if you’re like me). Don’t hesitate to reach back out.
Talk with Your Child: After your meeting with staff, again go over the key points that your child will need to know and be in charge of during their day. I think sometimes this component can almost get missed. Even if your child is with you at the initial meeting, there is sometimes a lot of back and forth conversation regarding how you want certain situations handled, and it can become unclear to a child what is their responsibility vs. the school’s responsibility. Be sure your child is clear on what is expected of them.
And if you’re like me, you might have some conflicting feelings about just how much responsibility you want your child to have with diabetes management. There is a fine line between giving them independence and burdening them with too much when they’re also trying to figure out school for the first time. You know your child best so you can gauge what all you want to make them responsible for and what things you want to hold off on.
When C first started school the main thing we stressed was communication. We stressed how important it was to tell his teachers if he felt high or low and how it was going to be important to really pay attention to how he was feeling and if he started feeling low he needed to tell someone and go down to the office and check his blood sugar, even if he wasn’t sure he was low. We went through a period of time where he would get busy playing and I think he would start feeling low but would put off telling us because he didn’t want to stop playing. It seems like such a no-brainer to us adults, but I’d say it’s pretty common for kids to do this. Kind of like when kids put off going to the bathroom until they’re dancing around about ready to pee their pants. Maybe this is just my kids? Anyway…even though this is totally common sense stuff, when a kid is at school and learning about raising his hand to talk and not interrupting others, it can be hard to speak up immediately at times. Diabetes makes it OK to be “rude” sometimes :). Stress to your child that it’s an emergency if he/she feels low and it’s necessary to speak up no matter what.
Talk with Classmates: When C started Kindergarten we had his teacher read the book Taking Diabetes to School to the whole class. Coco Goes Back to School is another good one, especially for younger kids. That gave a watered down version of what diabetes is, and explained that C would have to always go to the nurses office before eating or drinking anything, etc. His teacher also had him show them his pump and stressed that it wasn’t a toy and that no one should ever touch it. This one likely is not be applicable for older kids, but in Kindergarten I remember it being a concern.
Again this is one where you have to know your own child. Some kids may just be embarrassed if you bring it to everyone’s attention. However, I feel like kid’s are naturally curious anytime they see C check his blood sugar, etc. So, if you can do one quick explanation of everything, you can hopefully answer everyone’s questions all at once. C has expressed frustration with people asking questions and them “not understanding his answers anyway,” so this has been pretty effective for us. Now that he’s in his fourth year of school most of the kids know he has diabetes, so he has fewer and fewer questions, but we still do this at the start of each year. This year the nurse came in, read a book, and let them ask questions and C answered them.
Make Adjustments if Needed: You will need to make some adjustments to your plan. Even if you get everything right the first time, your child will grow or something in the schedule will change, and something will need to be adjusted with your management plan. Don’t worry about this, just be ready for it.
Get a full week or two under your belt and see how everything is going. Are your scheduled blood sugar checks proving to be at the best times of day? Does there seem to be low or high patterns identified that could be avoidable? If so, talk it over with school personnel and make changes, if necessary. For instance, in our first year of school, once we had been through a couple of weeks and could see exactly how his blood sugar was trending, we had to adjust his snack time, along with the timing of some regularly scheduled checks. To give a specific example, C would tend to go low before P.E. so we added a check before and after P.E. on those days. Or we took away a check right before dismissal one year because it was proving to not add value since I would be picking him up only minutes later.
But what adjustments should you make, and how do you figure it out? After all, you aren’t seeing them for most of the day. The answer is two-fold. First, keep in contact with the school personnel (which I’ll discuss in detail shortly). Second, establish a system for getting the data you need.
For us this has always been easy, and seems to get easier each year. We have made sure the school always has a meter that links to C’s pump, so all of the blood sugar readings from school are stored in his pump automatically. We can download those numbers from his pump using the diabetes management software of your choice, and start looking for trends in those numbers. Once we started experimenting with a CGM, we could get even more information and download that to use for further analysis. Now, in what feels like a miraculous improvement since day 1, using the Dexcom with Share technology, we can actually see C’s numbers all day long on our iPhones, and we can download the data to our computer at any time as well (and Dexcom’s software makes analysis a breeze). So, we get a glimpse into his blood sugar in real-time and also can make decisions with all of the data possible with little effort.
Of course, I realize that there are infinite ways to handle diabetes management, and not everyone chooses or is able to use all of the latest technology. If you don’t have access to download numbers in any way, ensure that the school provides you with a paper log each day. They should already be producing this for internal use, so it should be no problem for them to provide a copy in your child’s backpack.
Stay in Touch: Once the school year is in full swing it’s important to stay in touch with the school. Check in and see how they feel things are going on their end. It’s also important to have good communication about any notable events that happen with your child during the school day. We already touched on how to get access to blood sugar numbers consistently, but you should also make sure to touch base regularly with the nurse to find out if they are seeing any trends outside of just numbers. Is your child needing juice more often than you realize solely based on blood sugar? Are the having to prevent highs by doing correction boluses that you aren’t noticing? As you already likely know, it is so important to know the whole picture of the day as that information helps you better manage them once they are home for the evening. Your child can help fill you in on the day as well, but sometimes their school days can become muddled (or at least it did for C), so having good communication with the school can help avoid any confusion.
Lastly, be sure to have a means of communication established for the nurse to give you notice that a particular supply is running low in your child’s diabetes supply box. A little foresight and an agreed upon communication mechanism can prevent a mad dash to the grocery store and back to the school at the last minute (speaking from experience).
While it’s never easy sending your Type 1 child back to school, or to school for the first time in Kindergarten, my hope for you is that together we can make it a little easier for everyone. I hope that you can learn from some of my mistakes (which is how I’ve built these steps over the years), and I hope to get lots of feedback from readers like you so that we can keep growing this list year-after-year.
Here are some other helpful resources to check out: