Jen M.

This Picture Is Why We Still Need Diabetes Advocacy

As I was sorting through my digital photo files the other day, I saw this picture of an audiovisual cart. Tucked amid photos full of cute kid smiles and sentimentality, it should barely have been noticed. But seeing this image brought back a lot of vivid memories for me.

It was taken many years ago, at a time when my son had just transferred schools. The school James had attended previously provided him with excellent accommodations for his type 1 diabetes. The health tech would visit his classroom each day at regular intervals to check his blood sugar. James would present her with his left pointer finger while he continued to work on his assignments with his right.

At our new community school, they weren’t interested in classroom blood sugar checks. But due to the location of James’ classroom, I was uncomfortable having him walk all the way to the health office prior to knowing his blood sugar, even accompanied by another child. This became something of an epic negotiation with the school.

The audiovisual cart you see above essentially became the compromise. But one that I feel was unnecessary. And because of it, the relationship between us, the school, and the district became strained.

We were given many explanations for why blood sugar testing couldn’t take place in the classroom. At first they were concerned about blood. I pointed out that if James was the one doing the testing, then according to state law he could do it anywhere. Then they were worried about sharps in the classroom. So I bought a lancing device that uses a drum so that no sharps are ever exposed. For every argument against checking blood sugar in the classroom, I found a solution. Finally, they told me that they could do blood sugar checks in class if they used a dedicated cart that contained all of the necessary supplies.

Pictured above is that cart.

Let’s consider what it holds and its size. As you can see, it has two boxes of different kinds of non-latex gloves, tissues, a testing kit (noticeable on the top of the cart), a box that holds alcohol wipes, extra lancets, an extra glucose meter, some juice boxes, and extra boxes of test strips. And that locked cabinet on the bottom? That holds just a sharps container. According to the school, all of this was necessary for each and every blood sugar check that would be performed for James.

To be honest, I was ready to reject the idea of the cart. Maybe I’d have to trek to the school to check James in the classroom three times a day for the rest of his school career? (Which is what I had unfortunately been doing for many months while we negotiated, because I fundamentally believed that he needed more supervision before walking to the office.) I worried that the cart would draw undue and unwelcome attention to what James was doing. The cart just seemed so visual, so conspicuous. Like I said, I almost rejected it.

But my mom said, “No, Jen. Don’t. They want to use that cart every day? Let them. You know all that’s needed is the testing kit, which literally fits in a pocket. They know this too. They want to use this cart because they think you’ll hate it and give up the fight. Let them push it each and every time that he needs his blood sugar checked, and see if they stick with it.”

They did stick with it. Each and every blood sugar check (several times during the school day), they wheeled this cart up to the classroom, up two ramps, going the long way around to avoid staircases. Look at the picture again. All they needed was that meter case.

The cart is very unremarkable in appearance, and yet it is a perfect representation of what happens when a school decides to refuse accommodations.

The good news is that James transferred to a different school the next year with a very different attitude. There were no carts. There were no conflicts of any kind!

Most of our experiences have been amazingly positive. With most schools, some kind of compromise is required, but it usually works out. Every so often, a child is not served well by the policies at a school. I am grateful for the help we received from the American Diabetes Association and our local community. Even so, while we have been very blessed, we still managed to have one really tough experience. It’s moments like these — images captured like this one of the diabetes cart — that remind us that we still have a lot of work to do advocating for our kids in schools.

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.

Related topics:
Your Back-to-School Checklist
What Your Child’s Teacher Doesn’t Know About Type 1
Parents Reveal: The Best Question I Asked at Our 504 Plan Meeting

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