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While the mid adult mother watches, the young teen girl explains her pain to the mid adult female nurse. 1208597137 Getty Images

With the annual “Back to School” season just wrapping up, we thought it would be valuable to hear from someone who’s been on the front lines of looking after kids, teens and young adults with diabetes during school hours. It’s a tough job, no doubt!

Today we welcome Cassie Moffitt, who lives with type 1 diabetes herself and worked for years as a school nurse in Texas. She has just recently moved on to become a college professor in a nursing program, which provides a whole other POV.

We’re grateful for her work, and also her willingness to share her rich experience with us all here at the ‘Mine.

As of May 2019, I ended my tenure as a school nurse after nearly a decade. Was it because I’d had all the diabetes I could stand and had to run away? Of course not — I’ve been living well with type 1 diabetes since being diagnosed in 1983 at only 17 months old.

So what really happened? I graduated, so to speak, and became a college professor — a nursing instructor, to be exact. In some ways, it has been an extension of the primary and secondary school nursing I did for so long. In other ways, it’s been an interesting transition, both career-wise and in terms of my own T1D management.

Being a professor with diabetes

As a professor, it’s interesting, because just like everything else, I’ve had to factor in where diabetes might decide to show up unannounced and take a seat wherever it feels comfortable. You would think that if I’ve been doing this for the last 36 years, I would have this down, right? In a lot of ways, I do. Remember, though: diabetes isn’t static. As you’re well-aware, you can do everything right one day, and try to replicate it the next day with complete opposite results. Here are some things that I personally never would have thought I would have to factor into my work, but have become very mindful of in my new position:

  • When I lecture, it actually stresses me out! I
    want to do well, and I’m a self-proclaimed perfectionist. I’m also constantly
    anticipating: what questions will the students ask? Will I know the answer?
    What if I don’t? Is this a class that will talk the entire time I’m talking? How
    will I maintain their attention?
  • I always have my glucose meter and juice boxes at the podium. Since I generally
    run higher during lectures, I will often test between slides or at breaks and
    micro-dose insulin as needed. Most of the time, the students aren’t even aware!
  • When I’m at the hospital: I generally have to set
    a temporary basal on my pump of 8 hours at -70%! I also keep glucose tabs and my meter in
    my lab coat pockets.
  • I have to be very mindful
    of my blood sugar when I’m reading student papers so I can maintain
    concentration and grade objectively and accurately. As many of you know, it can
    be a narrow window between focus and fog (brain fog, that is) when your blood sugar is off. While I can go
    back and update grades if needed, I’d rather not cause undue stress if I can
    avoid it.

You may be wondering: has she ever gotten it wrong? This is diabetes, so of course I have! In fact, just this past week, I was in the middle of getting a briefing from a student about a patient when I started feeling low. I simply took out my meter, and started testing while she was talking. I was, in fact, low. So what did I do? I just started eating glucose tabs and we continued our conversation. I was actually kind of proud of that moment, because it was a chance for me to demonstrate how doable this is, and how it’s just something I do the way some people brush their hair back, or blink, or something mundane. There were no questions about what I was doing, and we both went on as the professionals we are called to be.

I’m actually very open with my students about my diabetes, because:

  1. My diabetes is as much a part of my life
    as my eye color — it just is. Sometimes I have to pay attention to it.
  2. I’m
    very passionate about demonstrating the ability to live well with a chronic
    condition and do all the things I want to do.
  3. I want to dispel preconceived
    notions and grow nurses who actually understand diabetes. That’s part of the
    reason I moved to the college level — because I believe medical professionals
    need to understand a condition they encounter so frequently, but don’t spend a
    ton of time on in their didactic learning.

Now you may also be wondering: have you had a college student with T1D, and how did you handle it?

To answer the first question: yes, I have. As weird as it sounds, it’s actually been very rewarding to see how these students navigate the transition between childhood and adulthood. Parents, give yourselves a pat on the back—you may not feel like it, but your kids were listening, and you’ve done a better job than you think you have.

Sending your kids to college with diabetes

Interestingly, students are not required to report their condition. However, I would highly encourage your students to do so—if not to their professors, at least to the campus Office of Disability Services. Their job is to advocate for students, make them aware of what accommodations are available, and then assist the student in navigating how to report their condition. Ultimately, it is the student’s responsibility to provide any necessary accommodations paperwork, and Disability Services will most likely require medical records and/or authorization from a healthcare provider to request correspondence as needed.

To reiterate: while students aren’t technically required to report their conditions, I highly recommend that they do. They don’t have to share their entire personal history, but it does help to know that a student who’s snacking isn’t doing so to be defiant or they aren’t being disrespectful if they leave the room. It also helps the professor to be aware of signs or symptoms of impending urgent events and how to work with your student in a respectful and confidential manner.

When students do report to me that they have T1D, I ask three questions up front:

  1. Do you feel your lows?
  2. What are your signs and symptoms of high or low
    blood sugar?
  3. Where is your glucagon? My coworkers all know
    where I keep mine, what it looks like, and how to use it.

The rest, I can figure out later. If there’s an emergency, of course one of us will be on the phone with the parents, but we’ll have what we need to advocate and/or provide care if necessary.

Case in point: I was visiting with a student one day when they reported that they had woken up with a blood sugar over 400 and large ketones. Our conversation was at least six hours after the fact. After I asked why they didn’t call in (we could figure out a plan B later), I started to go through all the troubleshooting questions (do you have a bad infusion site, are you sick, is your insulin expired, etc.), but the student beat me to it. They ran through the checklist of what they had done—it was everything an endocrinologist would have told them to do. In fact, the student had their endocrinologist on speed dial in case they needed something none of their support system (myself included) could supply.

I mention this to you to hopefully help you feel a little better about sending your own sorta-kinda-adult away from home. That transition is not an easy one, but I’ve been so impressed at how committed most young adults are to preserving their health with as little interruption to normalcy as possible—which is how it should be! This particular student didn’t need my help at all, but at least they knew they had a support person in their faculty. They just need to remember that it’s okay to ask for help sometimes.

While I do miss school nursing, I’m excited for this new chapter. While diabetes is tough and tiring, It’s another chance to advocate for all people with T1D by helping to train knowledgeable and compassionate caregivers. At the same time, I have the opportunity to make life easier for those with T1D and help them navigate a new chapter in their lives and the sometimes rough waters that come with it. This is why I do what I do.

A school nurse POV on diabetes

Of course, looking back on my POV as a school nurse in Texas for nearly a decade, there is a lot of advice to pass along.

If you’re the parent of a child with type 1 diabetes, back to school season may also be the most stressful time of year. You know what I’m talking about: sitting on edge to find out who your child’s teacher might be, praying to whatever deity you subscribe to that they will be understanding and tolerant of your child’s needs and a trusted ally. You may also be sitting on the edge of your seat praying that the school nurse you worked with last year will return, understanding and tolerant of your child’s needs or a trusted ally. If they were none of those, you’re probably praying they retired. And if they’re transitioning—from elementary to middle school, middle school to high school, or beyond.

I have been through all of that personally, diagnosed at such a young age before school was even on the horizon. I watched my own mother’s anxiety become my own, as she went through the usual routine of making sure I had plenty of non-expired supplies, snacks, and emergency provisions over a 13-year period. There were the meetings, the doctor’s notes, the “here-are-all-the-phone-numbers-please-please-PLEASE-call-if-you-need-anything” please. I get it. And I see you.

Back in 2012, my hand was forced and I “had” to become a school nurse. Prior to that time, I found school nursing insulting — even though it had been my very favorite rotation in nursing school, and it was a school nurse who taught me how to test my own blood sugar. Regardless, I had previously worked in a pediatric endocrinology clinic and the calls from the school nurses could be excruciating. “How do you not know that ketones are not an automatic reason to send someone home?” was just one of the questions that would make my blood boil. In some ways, it felt like a personal affront, for reasons you can probably imagine.

However, the view is different on this side of the fence.

Here is what I can 100% guarantee: for the most part, we school nurses want to do the right thing. Your kids are with us for most of their waking hours—away from you. We don’t take that lightly. We want to keep them as safe as possible with as little interruption as possible. I can’t speak for everyone, but I would think it’s generally agreed that a predictor of success is the ability to maintain both of those attributes.

School nurses are in an interesting position. We’re in the school setting, often bound by school rules. However, we’re also bound by the laws set forth by various Boards of Nursing (the rules vary from state to state). While I’m not a legal expert, I can tell you what was required of me and what I’m prohibited to do by law. I hope this will help clarify that we’re not making requests because we want to be difficult or we’re bored—believe me, we are anything but bored. We ask for things because we want to do the right thing, provide continuity of care, but operate within our licenses so we can continue to do the things necessary to promote success for you and your child.

Safety tips for your T1D child at school

One of the most important things you can do is bring a current set of doctor’s orders to campus. Without a set of doctor’s orders to provide specific ratios, correction factors, directions for testing times, numbers to act upon, provisions for activities, emergency management, and care-level of the student, we’re basically driving a truck off of a cliff while wearing a blindfold. That sounds silly, right? As nurses, we have to have specific direction on how to act, and with which doses to treat. Those same requirements govern us in hospitals, clinics, or any area where we might practice.

There are also very strict rules on taking verbal orders: we nurses can only take orders from a physician. I know this isn’t going to be a very popular statement, but that means we cannot take orders from parents or students. I know it seems harmless, since this is what you do at home. Unfortunately, the Board of Nursing may not see it that way. They see that as acting outside of our legal scope of practice, and some even consider it prescribing medication—a huge no-no.

In Texas, we can’t act on orders that are greater than one year old. Again, I know that’s a huge inconvenience, but kids change and grow a lot in a year. What might have worked a year ago may not work now—but I’m not allowed to determine that. And what might have worked a year ago can create a lot of havoc now—but again, I can’t modify those doses. If the issue is getting an appointment with your endocrinologist, or finding one, let us help. We want to.

Another huge help is if you bring all your supplies beforehand. There’s nothing (okay, almost nothing) worse than a kiddo who’s hungry and ready to go to lunch, and you find out that lo and behold, you have no test strips—or worse, NO INSULIN.

Worse yet, is when a kiddo is low and needs a treatment but there’s nothing on hand. Unfortunately, not all schools have snacks to spare. That’s why we beg parents to bring plenty of ­fast-acting carb snacks. I can’t tell you how often I got peanut butter and crackers or chocolate for lows. They’re tasty, for sure, and they’re helpful if you need a long-acting snack to tide over until a meal. However, we also need some fast-acting carbs that can bring blood sugar up quickly. Most schools follow the “Rule of 15” protocol for treatment of lows (15 grams of fast-acting carb, test in 15 minutes, retreat if blood sugar is below the number set forth by your care provider). So if you require a different approach, please, please, PLEASE have that placed in the school orders.

While we’re talking about things we absolutely have to have, I am begging parents, for the love of all that’s good and holy, to please bring an unexpired glucagon emergency kit. The likelihood of using it is rare, but as the saying goes, “It’s best to be prepared for the worst.” While glucagon use will result in an automatic EMT call, it’s imperative to give it at the time in order to prevent further danger.

Diabetes school supply checklist

I know there’s a lot to remember, so consider making a checklist of all your supplies. You might even mark the calendar with dates things may expire so you can be ready to “reload.” Here’s what I would include:

  • Glucose meter and test strips
  • and/or CGM sensor replacement supplies
  • Insulin (pen or vial, whichever you use)
  • Syringes/pen needles
  • and/or infusion set change supplies if your child is on a pump
  • Ketone strips
  • Lancing device/lancets
  • Glucagon emergency kit

Keep in mind that nurses and health assistants in some districts (like ours) are not allowed to do pump site changes. It’s considered an advanced, invasive procedure, and with pump warranties easily nullified, our nurses are not allowed. Be sure to check with your school or district nurse to draft an alternate plan. In my district, either the parent or student does the pump site change. If neither are available, then school orders generally reflect a plan to go back to syringes until the student leaves campus.

I would highly recommend a meeting with your school nurse prior to the beginning of the school year to outline all of this, so you can both be prepared and aware. If you’re having issues obtaining supplies—because it would be too easy if this were actually easy—please don’t hesitate to ask your school nurse about resources. You can also find good local resources through your local JDRF chapter, or various Facebook groups.

The 504 plan for diabetes at school

Most D-parents are already familiar with the 504 plan, a kind of official contract to assure that students with any sort of disability are not discriminated against, and are given the same education and opportunity as every other student, while being provided a safe space to manage their condition as needed during school.

In fact, this can be a hot-button issue. Some argue against 504 plans for fear of a student being “marked” as disabled, and therefore, subject to discrimination. My experience has been that without a 504 plan, students meet more roadblocks.

For example, Texas has the dreaded STAAR test—a standardized test that is the absolute bane of our existence for multiple dates throughout the spring. The rules of administration are so stringent that restroom breaks have to be recorded—just as an example. I tell parents to make sure everything is accounted for: time for testing and treating without a penalty, an opportunity to retake the test without penalty if blood sugar isn’t within the prescribed target, provisions for a cell phone if your child uses a Dexcom Share system or Nightscout, access to water, food, and restroom breaks without penalty. Those are just a few. To set up your own plan, check out some great examples of 504s on the American Diabetes Association website. You may also reach out to another T1 parent who has blazed the trail before you, or get ideas from your school or district 504 coordinator.

Every public school should have a 504 coordinator. It may be a counselor or assistant principal, but find out who that person is and request a meeting in writing. I would also encourage you to make sure the school nurse is invited to that meeting, as well as your child’s teacher. Then you can all work together to draft reasonable accommodations so that your child is successful at school.

If you’re finding that you’re not feeling supported, please, please, please go up the chain of command—from the district nurse or 504 coordinator, to the school administrator, to the superintendent, to the Office of Civil Rights if necessary. (Keep in mind that rules in private and parochial schools differ).

The most important piece of advice I can offer in this area is to plan ahead, plan ahead, and did I mention: PLAN AHEAD?? Even if your child isn’t in a year that requires standardized testing, go ahead and get those accommodations in the 504 initiated so that all you have to do is amend it going forward.

If your child will be taking PSAT, SAT, ACT, or any other standardized college admissions test, I would highly recommend starting the accommodations process as early as possible. I’ve had students and families who have started this process a year or more in advance because the accommodations can be very detailed and rigid. Work with your school counselor, school nurse, and healthcare provider to draft a detailed plan. Several drafts may have to be submitted to the College Board or other testing agency, so I cannot implore you enough to get this process initiated as early as possible.

The beginning of the school year can already be stressful with all the planning and prep. Adding management of a chronic condition on top of that is enough to send one… well, over the top. There’s always so much more I can say about this, but I feel these suggestions are a great start.

Those of you who have been doing this a while probably have more great suggestions that I haven’t even thought of. I welcome those additions; we’re all in this together. But one thing I want you to understand more than anything else is that your kids/teens/young adults can be successful safely managing diabetes at school. And we school nurses (and college professors) want to help you achieve that!

Cassie Moffitt was one of our Patient Voices Scholarship winners in 2016, who attended our annual DiabetesMine Innovation Summit that year. We thank her again for sharing her wisdom!