From Wisconsin, USA:
I am 14 years old, and I was just diagnosed with diabetes a month ago. After spending a week in the hospital, I felt that I had a pretty good control on my diabetes. However, when I went back to school, I encountered a whole bunch of problems.
First of all, when I got out of the hospital, I wanted to go back to school right away and get caught up. I had been feeling very very sick for a few months and had missed homework during that time, as well as the time when I was in the hospital. The problem was that the school wouldn't let me. Well, they didn't exactly say, "you can't come", but they insisted that I take another week off. I know that they were trying to be helpful, still it made me feel as if they thought that I was inferior. When I did return to school, I had problems on both ends of the spectrum, some teachers were overly concerned, and others wouldn't let me do necessary things, like go to the nurse to test my blood sugar.
That is another thing. They made me keep my glucose meter and supplies in the nurse's office. My school is fairly large, and when I feel low, the long walk to the nurse's office is difficult, and by the time I get there, my blood sugar can be as low as 21 mg/dl [1.2 mmol/L]. One of my teachers seems to blame me for having diabetes. If I miss some of his class because of a low or high blood sugar, he says that it is my fault, because of what I have eaten, even though my endocrinologist has discovered that most of my low blood sugar reactions are because of the fact that my pancreas is putting out insulin a few hours after I eat (a sort of delayed reaction).
This teacher sometimes won't let me leave to go to the nurse, especially if I have to go two days in a row. He also won't let me make up some of the work I miss. He doesn't allow snacks in class, and once when I felt that I was having a low blood sugar in his class and didn't want to ask to go to the nurse, he saw me eating a few pieces of candy. He kept me after class during my lunch hour, and since I use NPH in the morning, I suffered from another reaction. He wouldn't let me leave because he thought I was lying, and I ended up having to walk out of the classroom. That, of course, resulted in a visit to the principal, who also was unsympathetic, saying my condition was no excuse to disobey teachers and break the rules. There is also a problem with the nurse taking lunch breaks at unpredictable times, preventing me from access to my supplies. Once, the nurse left early, and locked up the office so I couldn't pick up my stuff after school. I ended up having to track down a janitor with a master key to get to my stuff. The nurse also seems to be very uneducated about diabetes: on my first day back, she insisted that my blood sugar of 137 mg/dl [7.6 mmol/L] was too low, and told me that I had to eat something, or she would have to call an ambulance so they could "put sugar into you through an IV". I ended up giving in and having a few pieces of candy, and the next day bringing in some literature for her to read.
Some of my teachers also seem to be to concerned. They are constantly looking at me during class, and one even repetitively asks how I am feeling during the middle of a lecture. The whole class gets to hear that I am still feeling fine. It's pretty embarrassing. Once, when a teacher of mine saw me eating some M&Ms that I work into my lunch every Wednesday as a special treat, she made me go down to the nurse, and told her about my "bad behavior". The nurse then made me call my parents and say that I was sorry that I had misbehaved in managing my disease, and that I understood how important health was and I would never cheat on my diet again. My mom was totally confused, knowing that I worked those M&Ms into my diet, and it was perfectly fine. Neither the teacher or the nurse would listen to my explanation that I was doing what I was supposed to.
My last complaint about my school is that there is not enough time at lunch. We have a 25 minute lunch, but by the time I go down to the nurse to check my blood sugar, and go to my locker, and walk to the cafeteria I hardly have any time to finish my lunch. Then on top of that, I have to leave a few minutes early to get to my class on the other side of the school. We aren't allowed to eat in the hallways, so I can't eat on my way to lunch or to my class. When I have not been able to finish, I'm not allowed to stay a little longer to eat, either. I have suffered a low blood sugar reaction a few times because of this.
I am inquiring as to whether the school had the right to do any of these things, and what I can do about it. When I asked my dad about one of those 504 plans, he said that I could deal with my diabetes and my school without getting the law involved or something, and he seemed very against it. I'm at a loss of what to do from this point.
First of all, congratulations -- It sounds like you have a good grip on your diabetes self-management! However, no one at school seems to have a clue, but please note that it is not uncommon for school personnel to doubt teens and to think they are trying to manipulate. That is why it is extremely important for you to have a 504 Plan in place to protect you, the school, and your parents. One way or another, your school needs to educated so that your needs can be met, and you can fully participate in all school activities. This is required by law. Some of the situations you describe are indeed dangerous and need to be taken care of immediately. I have several suggestions:
- Talk with someone on your diabetes team about your concerns. Perhaps your nurse or social worker can assist you in dealing with your parents and school personnel.
- You should also contact local chapters of the American Diabetes Association and Juvenile Diabetes Foundation to see if someone from one of these organizations can help.
- Enlist the assistance of the school nurse to set up a meeting with you, your parents, appropriate school personnel, and hopefully someone from your diabetes team, to devise a 504 plan.
- Utilize materials from this website including: The Law, Schools, and Your Child with Diabetes and Diabetes Management at School to help.
- Print out your question and my answer for your parents to see (at least my answer). You can't do this alone, and you do need your parents' help. It is important that you share your concerns with them.
I hope you continue to do well with your diabetes. Be sure to visit our teen Chat Rooms to compare notes with others in similar situations.
Original posting 6 Jan 2001
Posted to Social Issues: School and Daycare
Last Updated: Tuesday April 06, 2010 15:09:16
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