Here I am, with a long post.
I’m supposed to be asleep, and I can’t. So I’m gonna get my thoughts out and go to bed, hopefully. I couldn’t fit them all into the character limit of a tweet. So I’m calling this a reaction- my feelings on the subject as well as some mini “flashbacks.”
(Since this is a late night reaction piece- I am including a disclaimer that my thoughts are more scattered, I haven’t done as much organizing and proofreading that I usually do- but I had to get it out).
The article in the NY Times has me going, well a lot of people going. Has me worked up all over again. Thinking back on my personal experiences and the stories I have heard.
Some people are shocked that this happens, but sadly I’m not. Based off my experiences (which I know weren’t the worst, but they weren’t the best) and the countless papers, presentations, and projects I worked on in college, specifically related to 504 Plans- makes this so. . This lack of time, knowledge, and resources apply to parents and the families. There’s a lot of room for interpretation when it comes to 504 Plans and rights.
Of course the numbers aren’t accurate- The number of families that face problems with school systems is higher- it often goes back to Socioeconomic status (SES). Many families do not have the resources, time, or knowledge for advocacy and 504 Plans. and sometimes neither do the schools. The further you get away from major hubs like major cities, the worse this tends to be. I could sit and rant on this soap box for ages, but since I need to go to bed, I will make this short and to the point.
My family and I were not made aware of 504 plans until I was 14. That was 7 years after my diagnosis in 2007. I was overall pretty lucky that nothing came up.
When I was diagnosed with Type 1, we did not have a school nurse. The next year we got a school nurse- specifically because of me.
We had to fight to make sure I didn’t get held back a year when I was diagnosed too.
From the moment I was diagnosed, there was a constant stream of bullying surrounding the T1D (and other parts of my life).
Every year, I would join my parents in educating my teachers about Type 1. I started reading a children’s book about type 1 to my classmates and telling the teacher about how Diabetes was for me. I was lucky because if my dad wasn’t traveling for work, he was working from home, and my mom had flexibility with her job (to an extent). When my dad passed away, it definitely became a little more difficult when it was just a team of two.
Middle school arrived, and I started having more problems. For the most part, all of my teachers were actually wonderful with the T1D. On Team Mindy. Thank Goodness. Administration was the problem.
When I finally got a 504 plan, we had to fight to get the meetings and get everything squared away. Administration wanted me to go on an IEP instead of a 504 plan. But that’s not what I needed.
I had a teacher who made me carry my agenda to check in with the nurse in middle school- which had never happened before- but I chose my battles.
Two assistant principals, a new one in 7th grade and a new one in 8th grade, actually tried to take my pump off my hip the first week of school saying it was a phone, pager, or mp3. If it hadn’t been for my teachers coming to my rescue, I think I would have gotten in a lot of trouble for what I call sass…
In 8th grade when I had a roller coaster event with blood sugars on a field trip, one of the assistant principal’s went behind my back and my mom’s- and called an ambulance because “those blood sugars aren’t normal.”
Throughout middle school, I would have to prove that I could participate in activities. I had a teacher who was not happy that he had to attend the 504 plan meeting and gave me hell for the rest of the year. I’m not a kid to get in trouble, but he would find ways. I once had to go above and beyond to prove to him that I was at an endo appointment and not skipping class so he wouldn’t write me up. Apparently I forged my note.
A substitue teacher once told me I was faking it and tried to not let me leave to go to the nurse. But remember that sass? I left anyways.
I at least have to say, that in elementary and middle school, I had a place to store my supplies.
Before high school, we toyed with the idea of switching school systems because we were tired of all of this, the battles with administration. But I wanted to stay because my friends and my teachers (for the most part) were rock stars when it came to the betes. At least I had that option.
In high school, they would lock my spare supplies in a cabinet in the attendance office. Again, we had no nurse. When I learned of this, my mom and I fought to make sure I could keep my meter on hand. They didn’t want me to carry anything, but I was allowed to in middle school. I just needed daily check-ins.
I then had a not quite emergency, but I had to leave band practice because I was bleeding into my pumpsite and the attendance office was locked. I couldn’t change my site. A family friend had to pick me up.
That was the end of that.
We then fought to get a room and a part time nurse- we got the head nurse of our county involved.
The thing about the part-time nurse, she wanted me treat a blood sugar of 70 with 60 carbs…. I had to fight with her that I didn’t need that much.
The room would still be locked and you would have to search for someone to let you in. At this point, I decided enough was enough and carried everything with me. I never ventured there again. I also had safe places in the school if I needed them.
This did not go over well with administration. From then on, the administration treated me very differently. It didn’t change until my senior year when we got a new principal. I felt like eyes were on me to get in trouble. I would be the first for an outfit check for dress code or to make sure I had my ID badge around my neck. I would have to stop every morning if I went through the main door.
I would have to pull out my agenda every time they saw me in the halls during class, and I was not one to skip. None of the teachers ever checked. It was a small enough school, and to be honest, I was a well-behaved kid.
I found safety with friends and teachers.
After I graduated and had my diploma in hand, I set up an appointment with the superintendent. I was done. I was also scared that if I took too much action something would be jeopardized so I waited. I didn’t want this to happen anymore. He was very receptive to the meeting, and I heard there were actually a few changes made.
My experiences with having Diabetes and fighting for my rights and being treated differently in school did not make me want to register for accommodations in college. I was exhausted. I was over it. I hated the term “disability” because of everything I associated it with. I hated asking for help and felt like I was on my own in the world. I didn’t want another battle, but eventually I registered. I’m glad I did. (see number 3)
I spent 12 years of my K-12 life fighting for things I needed. Knowing that there was rarely someone with a lot of knowledge around me for safety. Knowing I was different. Knowing I had to always be my own advocate.
This is common. This is constant. Another part of Diabetes management that people don’t often talk about or take into account.
This^, the stories I hear, and the research I have done turned this into a huge soap-box for me. Because, it isn’t a simple fix. There’s so many layers to this. There’s SES and a lack of knowledge. An abundance of unwillingness. An abundance of exhaustion. It isn’t okay. But after some research- there’s more to the story- lack of resources, time, and funding impact school systems too (not to say this validates or gives excuses).
We have laws that leave a lot of room for interpretation. We have something in place that has no standards, funding assistance, or concrete training that is available to everyone. Of course it doesn’t always work or work how we want it to. It has to change. (Someday?)
Most people with Diabetes want nothing to do with anything related to the term disability- including care takers and care teams- but change is easier when you are a part of a larger community.
It doesn’t help that there is a lack of education and awareness for T1D. Plus, it’s an invisible illness/invisible disability.
Looks like I did go on for a while? Time for bed.
Hey you! Yes, you!
If you enjoyed this post, please comment and share. I’d also appreciate your feedback.
and of course-don’t forget to keep up with “There’s More to the Story” via email! (Right sidebar towards the top).