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Starting school as a newly diagnosed diabetic

Discussion in 'Parents of Teens' started by Sioux, Jul 24, 2014.

  1. Sioux

    Sioux Approved members

    Jul 20, 2014
    My son will be going back to school in September (11th grade). He was just diagnosed (7/14) so this will be his first experience being diabetic at school. I have the JDRF book they gave me in the hospital that discusses school, but that is not all that helpful in terns of practical advice for/from kids.

    If you have a high school child with T1D would you consider posting the most important practical things I/he should be thinking about/doing? Also, if your kids are willing to give you their insight that would be MOST appreciated. As much as we love them we will never see the world through their eyes.

    I am making an appointment with the school counselor to discuss supporting Bren next year and would like to have as much insight as I can before I meet with her. Thank you!
  2. Christopher

    Christopher Approved members

    Nov 20, 2007
    Seeing the counselor is great but another important part is having a 504 or some type of medical plan that clearly outlines how YOU want his diabetes managed at school. Then you must communicate your wishes to the appropriate school personnel (nurse, principal, gym teacher, etc) ideally in a face to face meeting.

    I am attaching a guide for managing diabetes at school that hopefully will be more helpful to you than what you have.

    Good luck.


    (There may be a newer version, I just didn't have time to look for it)
    Last edited: Jul 24, 2014
  3. mamattorney

    mamattorney Approved members

    Apr 9, 2013
    My child is not in high school, but she was diagnosed mid school year - so similar to you, we were headed to school with little knowledge on diabetes care.

    I think you should read up on 504 plans and read other's suggestions as to what to include in the plan -- there are lots of permutations -- but I think the one thing I would want to do is try to have a positive ongoing relationship with the school nurse and anyone else who needs to be involved. With such a new diagnosis, he will likely have evolving care needs as the year goes on. Not only on a physical level (insulin needs may fall dramatically, then rise) and on a emotional level - he may think he doesn't need help and turn out that he needs more than he thought or vice versa. I'm sure something will come up that you will have to change. I would craft an accommodation plan that works today, but everyone involved should know that it may completely change depending upon what happens throughout the year and that needs to be OK with everyone. You could even change insulin delivery methods during the school year (vials and syringes to a pump for example).
  4. Mimikins

    Mimikins Approved members

    Jun 22, 2014
    Hi! I am a type 1 diabetic who was diagnosed about a quarter of the way through my senior year of high school.

    One of the first things I did once I returned from school was set up a 504 plan between my teachers, the nurse, the school, and my family. Essentially, the 504 plan was a written discussion about my diagnosis, the affects it has on my education, and the accommodations I requested. Some of my accommodations included the ability to leave the classroom at any time to go to the nurse, unlimited bathroom and fountain breaks, ability to bring food and drink into the classroom, and that all absences related to diabetes care will be excused.

    With your son being a rising junior, I urge that you begin the process for requesting accommodations for standardized testing (SAT/AP and ACT) as soon as possible. The testing centers prohibit any food or drink being brought into the classroom, and doing something as simple as pulling out your meter to test for a hypo can cause your scores to be void. I took the ACT and AP exams during my senior year, and they both wanted at least a 2-4 month notice for requested accommodations.

    Even with all the accommodations, things still happen. Have your son keep a form of emergency glucose with him at all times, even if he is allowed to go to the nurse at any time. There were a few times where I would begin to feel low at the worst possible times -such as during an exam-, and the emergency glucose I had brought me up enough to finish my exam and head down to the nurse.

    In addition, don't expect everyone to be cooperative. I had an anatomy teacher who was a tad witchy. When we were at the 504 meeting, she was the one to make my request to bring food and drink like it was a major unfair accommodation. People ate in her class all the time, but she had the nerve to say "I don't want food in my class, but I'll let you eat something behind my desk without anyone else noticing." A few weeks after this, she decided to do a lab involving us eating food (lots of high-carb desserts). She went out of her way to notify the people with food allergies but did absolutely nothing to notify me of this lab. I would have greatly appreciated something along the lines of "We're doing a lab that involves eating food tomorrow. Here is the food that we will be having so that you can prepare for it", but it never happened.
  5. KatieSue

    KatieSue Approved members

    Oct 5, 2010
    Mine just graduated, she was diagnosed the week before 8th grade started. Hopefully you will be as lucky as we were with the nursing staff. They were absolutely wonderful. In high school she really only went into the nurses office if she was having a problem or to get back up supplies. At her school we kept extra insulin, back up meter, snacks, lancets, strips, batteries etc. She did use them a few times a year.

    Some kids are very quiet about their diabetes. The kiddo calls them stealth diabetics, cause you never see them test, bolus etc. She is quite the opposite, very open and unembarrassed when she needs to do anything in class. She would also talk to each teacher the first day of classes and let them know she was diabetic and what her PDM (for her pump) looked like and that it wasn't a phone so they'd know. We did have a 504 in place so she could have snacks/water in class, make up missed work (this never actually happened), and such. She only had one small incident in 4 years. She was low and eating a snack in class, the teacher got on her, she reminded her she was diabetic. The teacher pulled her aside after class and apologized as she had just totally forgotten she was diabetic and snacks in class were okay.

    I'll second getting the paperwork in for accommodations for the SAT and ACT. SAT and AP tests are run by the same company so you only need to do it once. It wasn't a horribly long form but it can take them a while to process. Our schools counselor got us the form and sent it in. We did not ask for stop time on the tests just that she be allowed to test and have water/snacks available if needed. When she took the test she was put in a separate room to test. She said it was great the chairs were cushier :)

    Her friends have all been great. At first a few were just totally fascinated by the whole process of testing and such. Now I don't think anyone really pays attention. The carb counting she mostly guesses. We did weigh and measure a lot at first. We still do if we're home. She's a pretty picky eater so it wasn't to hard to start memorizing the things she does like. There seems to always be some sort of food party, reward thing at school. Mostly she'd just guess on things. Sometimes it was perfect, lots of times it wasn't. It all worked out.

    She does have a CGM which is super helpful. She really liked having it in class because she could just look at the screen rather than having to haul everything out to test. Obviously if the screen said she was off she'd test but just glancing gave her an idea. She now of course refuses to wear it. I'm hoping she'll get back on it soon.

    She didn't play sports so I can't address that but I know most kids figure out a way to make them work. A lot of trial and error seems to be involved.
  6. quiltinmom

    quiltinmom Approved members

    Jun 24, 2010
    I hope I can be helpful, even though Ds is only 12. I'm not sure if you are looking for advice on the logistics side or the emotional side.

    One thing--let him be as private about his d as he wants. As in, be discreet in public if he wants you to. Teachers and other school people must know of course, but ask them to be discreet also, if Ds wants it that way. My son isn't embarrassed about d, but most people would think he is. He just wants to keep his own stuff to himself. He doesn't really like lots of questions or people watching him test or bolus. He doesn't like having to explain things over and over. When we are away from home I try to ask him quietly or privately about his testing, counting, etc. and give him permission to go somewhere less public for testing if he needs to. Honor who he is in this regard. If he were a girl, he would probably be practically a celebrity coming back to school post-dx, but for guys it's different. When it comes to peers, let him share only what he wants to, when he feels ready to. Also, Don't let him overhear you having in depth discussions about his diabetes with others. Either invite him in on it or don't talk about it at all within his earshot.

    Second, have you considered pumping? That makes a world of difference to our family, and it makes independent care for a busy teen so much easier, usually. Don't push it before you and he are ready, but keep it in mind. And your insurance company's mind too. Lol

    Third--trust him! This will be hard. There is a very fine line between support and nagging. I have crossed that line more times than I like to admit. But he is nearly grown....trust him to know what is best for his body and his life, and be there for him if he messes up or needs you. Your positive attitude will have more effect on him than anyone else's. Let him handle as much as he wants to. Make sure he's not trying to pretend he doesn't have d (common for teens to go through that phase) but if he's doing well, let him do it. And try very hard not to say no to anything because of d. It shouldn't hold him back. There is always a way to work it in.

    Good luck. Ds was in 3rd grade and I was scared to death sending him back to school after dx. You're lucky you get a couple months instead of a couple days. :)

    Chances are, everything will go smoothly and after awhile you'll almost forget he used to not have d.
  7. dianas

    dianas Approved members

    Nov 2, 2009
    A lot of schools have a no cell phone/texting policy. I've seen mention by parents of exceptions for texting for diabetes related purposes being included in the 504 so your teen can contact you for guidance with blood sugars during the school day.
  8. Mgirod

    Mgirod Approved members

    Apr 29, 2014
    As far as I know my parents are setting up a 504 plan with my school, that allows me to be able to carry my cell phone in case of emergency and all of my logs are on there. i'm about to start my freshman year so i haven't met the high school nurses yet but i will meet with them and my teachers as well. i will also have a meeting with my coaches with my parents there of course :) Your son can message me anytime if he has any questions i was just diagnosed 3 months ago so i understand what he's going through. Good Luck!
  9. aprilodell

    aprilodell Approved members

    Dec 28, 2014
    I have a son who was just diagnosed on Christmas Eve. I have tried in the past to get a 504 plan for him in the past for ADHD and have been denied from my school. They have been accommodating for things in spite of not having a plan and I am wondering if they are willing to just accommodating if people think that is ok, or is a 504 plan really necessary. I have sent them an email as we are on break and hoping that someone will be checking their email, as they may have to send their clinic staff to training per the state law if they are not currently trained. I am not sure if there are other kids who are also type 1 there or not.

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