Life with T1D

Embracing Your T1D in School, Cell Phones and Standardized Testing

Maribeth at 9-years-old on the day she received her insulin pump.

Maribeth at 9 years old on the day she received her insulin pump.

Being a young adult presents many challenges – between homework, sports, social life and the pressures of preparing for college, diabetes management can be overwhelming. But how do we create a balance between health and the stresses of both academics and relationships?

Being diagnosed at the age of two, many of my memories of school involve type one diabetes (T1D) and its way of disrupting daily life. In elementary school, I was not lucky enough to have the technology that I do now. CGMs weren’t anywhere near available and the school didn’t allow me to check my blood sugar in the classroom, so I made frequent visits to the nurse’s office. In fourth grade, I got set up with my first insulin pump: the ultra-groovy, bright blue Deltec Cozmo that I loved so dearly until a classmate gave my tubing a strong yank because she didn’t know what it was. In fifth grade, I was not allowed to have lunch at the school picnic because there was a miscommunication about what I should be eating. The next year, a staggering low blood sugar on the bus ride home sent me to the emergency room.

Looking back on these snippets of time, what sticks out to me is the possibility that these moments could have been prevented. With 19 years of living with T1D, many unexpected sick days, tests I could have done better on and many uncomfortable scenarios, there are a few things I would have done differently.

T1D is a personal disease that must be managed on a case-by-case basis. Each day is different, and decisions made one day may not work for the next. The T1D community must embrace this, and teach others to do the same! A key factor in T1D management is communication. Keeping lines open between parents, administration, nurses and the student is absolutely essential. One of the simplest and often overlooked ways of doing this is through the power of cell phones. Having a cell phone in school eases the minds of both the parent and the child, as well as nurses and admin within the building. Cell phones provide the ability to communicate about T1D management decisions in a matter of seconds. Texting, calling, and diabetes management Apps such as Glooko, BlueLoop, and Dexcom Share can help share blood sugar readings instantaneously as well as help determine educated treatment decisions.

While living with T1D, you have specific rights in regards to your health management in school. One of those rights includes having a 504 plan in place to protect yourself from discrimination, and provide assurance that your diabetes can be appropriately managed while at school. A 504 plan can create a specific protocol tailored to your needs. Here’s an example of what could be included in a 504 plan in regards to cell phone use:

“Cell phone to be kept on child and charged at all times, including on field trips, and used for remote CGM monitoring, texting and/or calling of guardians with glucose readings, insulin pump troubleshooting, and for dosing advice. Student in understanding that cell phone will not be used for social or entertainment purposes during class time. Cell phone may never be taken from student. Student to have access to school wifi networks and outlets for charging purposes as needed.”

This is a great way to stay on top of your own health as a student, and to keep others in the loop. It is also a way to reiterate the fact that T1D is a demanding disease that requires constant attention. Another feat of mine prior to college was taking the dreaded SAT while dealing with the stresses of T1D. I was given the option of having accommodations during the test, but refused to take them out of fear of being excluded from my classmates and feeling “different”. In truth, people living with T1D are different. During my entire test period, I could not concentrate. What if my pump alarms? My test will be terminated. What if I HAVE to use the bathroom? What if I go low and can’t drink a juice? I’m doomed. I’m sure that nobody else in my exam room was bombarded by these ‘what-ifs’. In retrospect, an accommodated classroom where I could have access to my supplies would have been much more comfortable, and I would have been able to focus on my exam.

When living with T1D, I encourage you to take advantage of the resources that are available. You are not weak, but courageous to ask for help. Being open and prepared will only help you be even more successful.

Maribeth Stent, JDRF

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