That time of year has arrived once again, when the kiddos to college students are all heading back to the classroom. Throw diabetes into the educational mix, and that can be a formula for trouble if you're not careful.
We know of a whole bunch of online resources to help during Back to School season, from the JDRF to the American Diabetes Association that runs its Safe At Schools program and handles school legal questions all the time. There's also great info from the College Diabetes Network, for those venturing off to higher education.
But what about questions relating specifically to all the new diabetes technology that students these days so often carry, and the data management challenges that come with it?
Specifically, we were curious to know: Do they weave these items into their 504 plans, that lay out what's needed to accomodate students with diabetes on school grounds? How responsive are teachers and educators to this data-sharing? And how about those school nurses who have a tough enough time just dealing with the basics, let alone this advanced tech monitoring?
We put out a query on the CGM in the Cloud Facebook group, and identified a pair of families who use these latest and greatest D-devices who were willing to share their stories... In their own words.
D-Mom Leigh Davis Flickling in North Carolina
There were tears. And lots of them. No, this isn’t our diagnosis story, which, of course, is also very sad. Instead, this is our story of the dreaded “K”... K? Nope, not ketoacidosis. KINDERGARTEN. Before I begin my guest post, I need to establish a little bit of a background so you can understand where we have been and where we're going. I’m a first-time mom and I’m 40. I was lucky enough to get the “buy one, get one free” birthing special and had spontaneous boy/girl twins in 2009. Hooray!
Fast forward three years to 2013 and we got the life-changing diagnosis of T1D for our daughter. As you know, life changed forever with one finger stick. Over the last three years, we’ve been through many different phases in our love/hate relationship with diabetes. Just like with pregnancy, we’ve read every book available about the topic of T1D. We read blogs, we attend conferences, we talk with other parents and we do the very best we can do to make life as normal as possible for our daughter, and her non-D twin brother.
What we were not prepared for was the dreaded Kindergarten (cue scary sounds: dum, dum, dum). We managed our way with diabetes at preschool because the preschool was less than a mile from our offices and we could drop in for boluses or to treat lows and highs or the occasional “squealing pod of death.” But, kindergarten? At “big school?” What would happen to my daughter? How could “they” possibly keep her alive during the day when “they” have so many other things to do and so many other kids to help?
My husband and I have become full-time professional substitute pancreases. How could we expect the same from public school professionals who are charged with the duty of educating our youth? My full-time job is to implement ADA (Americans with Disability Act) accommodations at a major research university and health system. I know the law. I know what “they” must do. All day long, I work to make sure that people with disabilities are properly accommodated in the classroom and in the workplace. After our diabetes diagnosis, my work life and my home life merged. I would now have to worry about my own daughter’s accommodations. How could we make this work?
The answer was with teamwork. For those of you with young children who have made it through the “Wonder Pets” years, you are familiar with the theme song: “What’s going to work? TEAMWORK!” One of the biggest members of our team is Nightscout. We joined the “cloud force” in June of 2014 and were among the early adopters of this most amazing system that will allow me to be a working mom with demands that go beyond my side-job of substitute pancreas.
In preparation for kindergarten, we knew that we needed to take proactive steps to implement our Nightscout system in the public school setting. Our twins attend a new charter school where rules about diabetes management are a little more flexible and less rigid than a traditional public school (read: we make it up as we go). We have created a team with our school nurse, school administration, specialist teachers and classroom teachers to try to make sure that my daughter spends less time worrying about diabetes and more time being a student.
In our state, we have diabetes care plans in place (in lieu of, or in addition to, a traditional 504 plan) that cover all aspects of diabetes management. Knowing that Nightscout was very important to us, we asked that certain items be added to the care plan so that we would always have access to the Nightscout system (access to school internet services, permission to carry all diabetes-related devices with her at all times, including her Nightscout cell phone). We purchased a Pebble watch for the part-time school nurse or front desk staff members so that they could watch my daughter’s numbers throughout the day. We installed the Nightscout website on the front desk computer at the school so that even parent volunteers who were working at the front desk could be alerted with a high or a low and make sure that someone was taking action.
And then, once the team was established and the tools were in place, we cried those tears that I mentioned before. We had done all that we could to establish the best possible framework for our daughter with the hopes that she would have a successful transition to public school and kindergarten. There was nothing left but tears.
But, you know what?
She came home each day. Her diabetes supplies came home each day. She never went into DKA. She never fell into a coma from an untreated and ignored low. We communicated daily with our team. We worked. They worked. And Nightscout worked. And, in the end: She. Was. Fine. We made it through kindergarten.
I cannot imagine our year without Nightscout. The school staff were able to go about their daily business until they had an alert on their Pebble watch (or until it was time for lunchtime diabetes activities). I was able to go to work and attend meetings and (gasp!) think about other things besides diabetes management. The use of the CGM in the Cloud, was, and will always be our most important tool in our D-kit and the most important member of our team.
We will be forever grateful for the members of the Diabetes Community who decided not to wait on technology to catch up to the needs of parents. My daughter is no longer waiting either. The twins are off to first grade. This year, instead of crying at my office on the second day of school, I am sipping a cup of coffee and glancing at my Pebble. 150 arrow to the side. All is well. #WeAreNotWaiting
D-Mom Melinda Wedding in Texas
Our daughter Carson was diagnosed at almost age 8 in 2011 during the Snowmageddon adventure in Dallas that closed school for four days. I spoke to her second grade teacher to share the diagnosis on a Tuesday. By the time we returned to school the next Monday, our teacher had informed all of the staff. The nurse met us at the door, walked us through their procedures, and gave us such peace of mind.
Within a week the guidance counselor had called us and told us that our school district requires T1s to have a 504 plan on file. I was reluctant at first because I did not want her labeled as someone with a disability, but the counselor explained the rationale for it and within a month of diagnosis we had it in place.
For us, our first use of Nightscout came in May 2014, just a couple of weeks before the end of elementary school. Our nurse and crew were floored at the convenience and peace of mind that having Carson's numbers in the cloud brought everyone.
That Fall, we moved to middle school. I requested a 504 meeting in September to make sure we had access to Nightscout. Their staff and nurse could see the value, and they were happy to add it for us. In middle school, many students have cell phones, so we made sure our plan stated that Carson could keep hers with her at all times.
We have a smart 12-year-old and together with her school nurse, we realized she was able to track things on her own. I think I only had to call the nurse myself once when Carson had an observed low and and wasn't replying.
The nurse does not monitor closely. We give the link to her and to our daughter's teachers, but generally we've worked out a system where they trust Carson and me to text briefly to take care of things.
The goals in middle school are definitely different than in elementary school. I can definitely see where our elementary school nurse would have used Nightscout more intensely to keep an eye during PE or recess, for example. But now that she's a bit older, we've determined that we have to give our daughter a little wider range to operate -- we don't text her to correct unless we see a serious high or low coming.
Still, in late September last year, I had a minor freakout that I wasn't communicating with the school nurse as often as at our prior school. I talked to her, and we were both amazed that with Nightscout, Carson was able to stay in class more, be distracted less, and simply live more normally than when all her checks had to go through the nurse. It was an epiphany!
Last fall, we amended our 504 plan to simply say, "Student has full access to use all technology devices that help update her, her family, and the nurse with her care." The school could sense that the gadgetry involved would change and wanted to leave it as open-ended as possible.
They even worked out a solution to ensure she was monitored during STAAR testing (the standardized tests in Texas), although phones were supposed to be in lockers. (I'm not sure they'd want that broadcast.) Kudos to the McKinney Independent School District for being nothing but supportive and helpful in diabetes management and in using Nightscout to help Carson be at her very best in school.
We're very fortunate that our district is truly among the leaders for D-care that I've seen in Dallas-Fort Worth.
Thanks to Leigh and Melinda for sharing their D-stories about data-sharing in school! We assume much of this rings true no matter the device or type of D-tech you're using. Hope it's a happy start of the school year for all of the Diabetes Community!