What Shocked Us Most—Having Type 1 Diabetes in Elementary School


evelina jones 3In the beginning, our greatest fear was not finding acceptance in the entertainment world. My 9-year-old daughter, Elladia, a model and actress, had been diagnosed with type 1 in early 2015. As we began the difficult process of transitioning to our new normal, we took for granted that the changes to our day to day life would be the easy part to get used to. But looking ahead, we couldn’t help wondering how this would affect Elladia’s career in the entertainment industry, worrying about what setbacks she would now face. As it turns out, our fears were ironically misplaced. We quickly found acceptance in the business after Elladia’s diagnosis. The industry was kind to us and tremendously supportive of Elladia and her new normal. It was the shock of our life to find out that it was our school, our home and our town—our every day life—where we would experience our biggest nightmares. We weren’t prepared for what was really to come.

When our private school brought in a new nurse, and she and my 9-year-old daughter, Elladia, got to know each other, we sensed an immediate disconnect that wouldn’t seem to go away. “She squeezes my fingers so hard when she gets blood,” Elladia told me. It was one of many complaints that she never felt comfortable addressing with the school nurse directly. Her reluctance began right at the beginning, after feeling resistance when she came forward to the nurse. “Is your nose growing like Pinocchio?” The nurse joked during one of their first meetings when Elladia said she was feeling low. The question was met by a nervous giggle, as a shocked Elladia struggled with how to respond to the suggestion that she was making up an excuse to leave class. With hypoglycemia and hyperglycemia, Elladia has always been able to identify her symptoms accurately. When she says she’s low, she’s low. It would be irresponsible to suggest anything else. Signs of hypoglycemia require that she be tested right away. I realized then that this wasn’t just a matter of the two not talking to each other. Here was the nurse actually invalidating my daughter’s feelings.

One Tuesday after school, Elladia told me she was low shortly after lunch. She admitted to me that she hadn’t eaten her ravioli at lunch, but didn’t tell the nurse. At that moment, looking at my daughter and seeing her so uncomfortable—to the point where she chose to go low and experience the horrible symptoms of a hypoglycemic episode because even that seemed more doable than having a conversation with her nurse—I realized we had a serious problem.

Another afternoon, as soon as Elladia got into the car, I knew something was wrong. Her faced flushed red, she was being hyperactive as we started driving, and I quickly pulled over to check her. Blood glucose: 22.2 mmol/L400 mg/dL. Manual injection immediately. Noticing and changing her bad pump site, I wondered how long she’d been this high.

As it turns out, all day long she’d been almost 22.2 mmol/L400 mg/dL, the bad pump site going unnoticed by the nurse. Regardless of clicking away at her pump, Elladia had not actually received any insulin. Lunch wasn’t covered, and her numbers weren’t corrected. It wasn’t until 2:30 p.m. that day that the nurse realized Elladia had very high, elevated numbers, though she still didn’t recognize that the pump wasn’t functioning correctly.

Elladia’s insulin pump is the very device that saves her life every day. But sometimes, technology fails. And at those times, it falls on the nurse’s shoulders to remedy things as quickly as possible—before the worst case alternative, diabetic ketoacidosis (DKA). Developing large ketones from her uncorrected bad pump site put Elladia out of school the next day. No type 1 child should have to go a full day with such dangerous blood sugars and suffer the after effects, simply because their nurse was unable to manage the device.

We provide the information about the pump, and communicate about its components and how to manage it. We have a plan in place to redo bad pump sites. And we would only hope that our school nurse would be able to take action, following our guidelines, when the need arises. Unfortunately, this is not something the school nurse was or is comfortable with; in our case, it’s Mom who is the nurse on-call for pump site changes. Should anything happen during the school day, I’ll get the call. It would be comforting to know Elladia was in the competent hands of a medical professional if for any reason I had to be unreachable during a pump malfunction. As it stands, I’ll be by the phone.

Elladia’s third grade classroom was no more of a safe place for her than the nurse’s office, and every day, she dealt with classmate bullies and an unsympathetic teacher. Mean girls were taking a hard line, a “You can’t sit with us” policy, and making comments about her “contagious” disease and “disgusting” pump. Every hurtful, untrue word and comment came not only from the many misconceptions about type 1 diabetes, but also from a place of pure unkindness. And this extended to the teacher.

“Elladia, you need to go to the nurse’s office. I shouldn’t have to remind you.” One afternoon, after receiving a phone call from the nurse asking for Elladia, her exasperated teacher openly berated her. At this age, and distracted by schoolwork, it’s not a child’s responsibility to look after herself. Instead, it was her teacher’s lapse in her caregiving duty when she forgot to send Elladia for her check-in with the nurse. And a private reminder was the better alternative to a public display. So many things, including her frequent nurse visits, already made Elladia feel like she was different. Being called out by her teacher so obviously in front of the entire classroom also made her feel belittled.

On top of it all, each time Elladia was sent by her teacher to the nurse’s office, she was unaccompanied. She had been wandering the hallways alone, at times with a life-threatening blood glucose of 1.7 mmol/L30 mg/dL. Worst case scenarios played through my mind as I arranged for a meeting with the principal.

Surprisingly though, the principal put a buddy system in place for Elladia and acknowledged that what was going on was dangerous and unacceptable, (a promising sign of improvement). We had only known resistance from administration before when it came to questioning the decisions of the teacher or nurse.

In school, we’re labeled by diabetes. We’re “difficult.” We’re faced with that “look” on the faces of the secretaries every time we come in or out the school doors—every time we leave notes, call the nurse, or have meetings with administration. It’s why my daughter feels self-conscious about her disease, and why I feel that all the work I put in to make her feel like nothing can stop her has come to nothing.

I had to ask myself, is it worth it? All the anger, frustration, and tears from eight hours at school? Why would I want my kids in that environment? Am I paying them to hurt my child? So I told Elladia I wanted her to consider public school, hopeful that we could start over and not have to wrestle with the difficulties of managing diabetes in the private system. I should have known that after everything she’s overcome so far, my daughter wouldn’t accept the easy way out. She looked at me—“But Mommy, you always told me there’s nothing I can’t do because I have type 1, and now you’re telling me I have to leave school because of it?”

That was a turning point.

But that’s Elladia. She’s someone special, someone strong and she hasn’t let this change her. She’s a pleaser at heart who never wants to be difficult. She would never lie, never have a “Pinocchio nose.” And people see these things on their own as time unfolds. Their attitudes change when they finally see her for who she is.

Maybe in her new role, the school nurse felt like she wasn’t capable of taking on the role of taking care of someone like Elladia. Or maybe some of it was ego, wanting me to take more of a backseat and not step on her toes. But as the school year progressed, and the nurse watched Elladia manage her disease competently, gracefully and with self-assurance, we made a breakthrough. The nurse was ready to start doing her job the right way. We received an apology from her heart, and watched her efforts to prove that she now had Elladia’s wellbeing in mind.

Through all of this, Elladia has come a long way in speaking up for herself. She stands up to other kids when they say something rude or obnoxious about her illness, and she’ll let them know politely that they hurt her feelings. She can communicate to the nurse when something is bothering her, and is brave enough to knock on the door of the assistant principal’s office for a word when she has a concern.

Today, I’m a different person, too. Never again will I allow anyone to question Elladia’s or my decisions about her type 1 management. I actively look for ways to educate and spread awareness in the school wherever I can. Designing and implementing our first 504 plan in the school, a formal action plan for Elladia’s diabetic treatment, has been the biggest step in the right direction. With our school’s support, we were even able to have Sierra Sandison speak to the students about type 1 and the importance of embracing others’ differences. The bottom line is: to make change happen, your school has to want it. For awhile, we didn’t have a strong enough support system, but we’ve spent the past year getting everyone on the same page and making sure that we are seen, heard and understood. It takes time, and we’ve come a long way, but there’s still a ways to go.

On one side of the Lincoln Tunnel, in the city with Elladia for her modelling jobs and acting gigs, we’ve been consistently met with kindness and acceptance in the face of diabetes. Things almost feel as before. It’s leaving the Lincoln Tunnel and heading back home that we’re reminded of all that has changed. Third grade has challenged us with emotionally exhausting school days and tear-filled car rides home. But by pressing for change and raising awareness, Elladia has paved the way for future kids with diabetes at her school. No one else will have to go through the same ordeal she faced this year, and that is our light at the end of the tunnel. Hopefully by fourth grade, we’ll have more than just a glimpse of the bright side.

Read more about a 504 Plan and check out our Elementary/Primary School resources!

WRITTEN BY Evelina Jones, POSTED 08/09/16, UPDATED 09/30/22

Evelina Jones is an early childhood teacher and mom of two, who’s lucky to be a stay at home mom and raise her beloved children Elladia and Hunter Jones. Since Elladia’s diagnosis of type 1 diabetes (T1D) in January 2015, Evelina has worked as an advocate for the disease by spreading awareness, educating others and fundraising for a cure, all while managing the schedules of her two young professional actors and models. Evelina and Elladia use their industry social media presence (Instagram- @elladiajones) as a platform to give visibility to T1D by sharing Elladia and Hunter's adventures as a brother-sister duo pursuing their dreams in acting and modeling.