The Advocate

When Morgan and Carson were growing up with Type 1 diabetes, Amy and I strove to make their life as normal as possible. We openly checked their blood sugar levels and gave them insulin shots. Our hope was that doing so would make it just a normal part of their everyday lives. On occasion a friend or stranger would inquire about it out of curiosity, and we happily shared with them what we were doing.

Someone once described Type 1 diabetes as a juggling act. You must constantly juggle your diet, insulin levels, and your exercise. The only difference being that you can never drop the ball without impacting your health.

Through grade school the boys would go to the nurse’s office to check their blood sugars if they felt their glucose levels were running low or high. To make it easier for the school, we requested that they be placed in the same classroom so that they had a buddy nearby who could recognize adverse effects of their diabetes. Amy also met with the teachers and school staff prior to the school year to educate them about their lifelong condition.

Each day, Amy or I would pack them a lunch and include a form listing the food contained in their packed lunch. They would eat with their friends and then report to the health room where an aide would review how much of their lunch was eaten, calculate their insulin needs, and then administer their insulin. The only drawback was that to count the carbohydrates in their lunch, we required them to eat a cold lunch we packed each day.

As they grew older and transitioned to Middle School, they began to grumble about never being able to eat a hot lunch from time to time like most of their friends. They grew like weeds in Middle School, growing over nine inches from one year to the next. It became increasingly difficult to balance their insulin needs as they grew so fast. Their grumbling about not having the opportunity to eat a hot meal grew when they entered high school. In addition, Amy and I felt it was in their best interest to be able to test their blood sugars in the classroom and dose appropriately instead of having to go to the health room every time they needed to check their blood sugar.

So, in their freshman year, we approached the school about obtaining the carbohydrate counts of their hot meals and to communicate our wishes that they be allowed to test their blood sugar as needed in the classroom. We were worried that both Morgan and Carson would use their diabetes as an opportunity to escape the rigors of academic learning for goofing off in the hallways.

The school referred us to the school cafeteria manager for the nutritional information of their hot lunch program where we ran into our first obstacle. Despite numerous phone calls to discuss our needs, the manager refused our request for the nutritional information citing her lack of data. The health room also pushed back on our insistence that they be able to test their blood sugars in the classroom. Their argument was that no one had ever requested it before, and they saw no need to accommodate us if none of the other diabetic parents had.

In frustration, I reached out to a local advocacy group for their advice on how to compel the school to provide the changes to their diabetes management we requested. Their recommendation was to contact the school administration and politely make our case. At the same time, they provided language for me to request an official reasonable accommodation request (known as a Section 529 plan) if our concerns were not met. Nothing scares a school district more than the additional paperwork and staff resources needed to comply with one of these requests.

Within a day, the Superintendent’s office reached out to us to schedule a meeting to discuss our request. Amy and I arrived and were promptly ushered into her office. After pleasantries were exchanged, Amy fished two photographs of Morgan and Carson out of her bag, set them on the table, and politely pushed them in front of the superintendent. She said “Before we begin, I just wanted you to meet the two students we will be talking about.”

It was Amy’s way of humanizing our request and sending a very pointed message to the superintendent that when it came to our boys, we were their advocates. We would not being taking no for an answer.

To her credit, she absorbed Amy’s gambit with grace and patience. Twenty minutes later we exited her office with an official apology for our challenges and assurances that our requests were reasonable and would be implemented quickly for the upcoming school year. Within a week we were provided with the nutritional information we had requested and changes to their diabetes management plan were incorporated.

I like to think that Amy and I were always the staunchest of advocates for the boys. We remained perplexed that we were the first to request these changes given the prevalence of Type 1 diabetes. As parents, I believe we must always be our children’s strongest advocate, especially when they are too small or too prone to accept the status quo.

Recently, I told one of my adult children the oft refenced saying “The squeaky wheel gets the grease.” They had never heard the expression and asked me what it meant. “It means,” I said, “that sometimes the person who speaks the loudest or just won’t take no for an answer, often gets what they want.”

Sometimes we must take on the role of the advocate to fight for our children. Even if it takes sliding a picture of them across the table to remind everyone that they are not just a name on a piece of paper, but a human being who is loved and cherished.

Every parent that takes on that role for their child with unapologetic passion and love deserves admiration and respect. Salut.