Back to School with Type 1 Diabetes

“They won’t let me on the school WiFi!”

“They changed our staff and we only have a part-time nurse!”

“I’m just going to sit the parking lot all day.”

The back-to-school posts have begun. But don’t panic! Here’s what you need to know when you send your child with type 1 diabetes to school:

It’s going to be okay.

I’ve been there. I know the worry. My son was diagnosed at age two and is now in eighth grade. We’ve had our ups and downs, in school and out with type 1 diabetes.

In our local Facebook group, the big questions are about continuous glucose monitoring (CGM) and remote monitoring. At least two large area districts seem to have changed their policies about staff following students’ CGM systems at school. These are schools that last year allowed staff to follow using dedicated devices left at school. We’ve already seen many schools ban staff from using personal devices for that purpose.

This week on the podcast I speak with Crystal Woodward, the director of the American Diabetes Association’s Safe at School program. We focus on daycare, preschool and elementary school. We talked about CGM and working with schools through disagreements, but we this issue of sudden policy change came up after our conversation. I circled back with Crystal and she said, “If you are seeing these posts would you please respond by suggesting that they call the ADA at 1-800-diabetes or email us at askada@diabetes.org for information and guidance.”

She also said that the ADA is working on updated CGM guidance (she mentions this during our interview). Right now, they believe that “the use of data share capability should be based upon an individual assessment of each student. It can be a useful tool for all stakeholders and that the family, health care provider and school nurse should work together to determine an agreed-upon approach and process for using.”

Here’s my take as a mom of a kid who didn’t have a CGM until age nine and no remote monitoring until he was in fifth grade. I honestly don’t know how these nurses follow all the kids at big schools and do everything else their jobs require. We have more than a thousand kids at some local elementary schools! I am 100% in support of parents and their medical care team creating a school plan that works for them, but I worry that parents think if someone isn’t watching their child’s receiver all day long that the child is going to be ignored.

Remember, until about three years ago, there wasn’t a kindergartner in the country with remote share options. The schools, doctors and legislators are playing catch up as the technology moves faster than the policy and legalities. Not saying you shouldn’t push; I love our Dexcom, but it should be a useful tool, not a burden.

I do think these schools need to get their policies straight, consistent and well-publicized. The first week of school is not the time to be springing new stuff on stressed-out parents. That’s just not fair.

What can you do? Treat your school staff like part of your care team. Use that kind of language: “our team,” “working together for the same goal,” “how can I help?” Save the torches and pitchforks for when you really need them – and unfortunately, some parents really do need to fight; I know not every school staff is supportive and helpful. Know your state laws (click here for a state-by-state guide) and don’t be afraid to call an advocate or even a lawyer. But that should be the last resort, not the first option.

I hope this week’s show helps you learn more about your rights, federal law, and school policy. I also hope it helps to hear Crystal and I talk about sending our kiddos to school with “older” tech. Her daughter was diagnosed at one and is now a healthy, happy 27-year-old ICU nurse. Benny tells me he’s a “senior in middle school” and he’s ready to take on the world.

Wishing you a great start to the school year!

This post originally appeared on Diabetes Connections. It has been reprinted with permission.

Stacey Simms is the host of the award-winning podcast Diabetes Connections and she was named one of the Diabetes Forecast Magazine’s “12 People to Know: 2017.” Stacey’s son was diagnosed with type 1 diabetes in 2006, one month before he turned two, and Stacey started blogging about her family’s experience with diabetes a few weeks later. For more than a decade, she hosted Charlotte’s Morning News on WBT-AM, the city’s top-rated morning radio news show. You can find her on Facebook and Twitter.

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This #RealityMom or #RealityDad has graciously agreed to share her word baby with our site and we are eternally grateful.

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