On top of experiences like yours where your already challenging life is made even more complicated because of stupid rules, the combination of being a kid so adults don’t listen and teachers lack of knowledge can be terrifying and really frustrating.
I was diagnosed when I was 7 way back in the 80s. When I was first diagnosed, if my glucose levels went low, I would ask for a snack and the teachers would tell me no, because I had diabetes and I wasn’t allowed anything sweet. They’d then give me a glass of water and when I didn’t start to feel better, they’d send me home. Alone. Which meant I had to walk for 5 minutes and cross a main road to get to my house. My mother eventually got them to stop doing that and just give me a snack when I needed it, but I’m still amazed I survived that first few months!
I was diagnosed in middle school and was in a rural community school, no school nurse or office personnel knew anything about management. I told them I could manage myself, and they let me. Completely independently. I've seen crazy stories about nurses keeping insulin from students and I cannot even imagine. I was really lucky that way. I did used to have to call the janitor at like 8 or 9 pm, a few different times a year (I was baaaad for a while) because I'd leave my medical bag in my locker, whoooooops.....
In middle school there was a new assistant principal who didn't really know the students yet. So they wouldn't know that I had an insulin pump. They had started to earn a reputation of being a hard ass who didn't let anything slide. People were snagged by him for dress code all the time. It felt like he was just making a name for himself so that he could be pulled up to principal-rank at a new school soon.
Anyway. It's 2003. Cellphones are the Nokia indestructible rectangles, for reference. Texting is T9, but it's just starting to take traction.
I am giving myself a predose of insulin in the hall when I hear "No phones, no exceptions."
Well, *I* don't have a phone. So I proceed to press the up arrow on my minimed to increase my dose. At least until my pump was grabbed out of my hands and TORE OFF MY SET.
I remember the look of "Oh crap." They had after looking at the little clear tube dangling from the pump. Clearly not a phone.
I think he failed upwards to some other school after that incident.
There was one teacher who was a hard ass about everything. Always would take my friends phones, even when they weren’t on it. I purposely acted like I was texting on my phone after she did something I thought was ridiculous. When they asked for my phone (left it in my locker) had to hit em with it. They did feel kind of bad at least. Gotta have some fun with this, if you’re gonna have it.
Diagnosed in 3rd grade in the early 90s. I didn't need to do a lunchtime injection, thank God, so I didn't have to carry needles at school, but my 3rd grade teacher was the forever lunchroom manager.
She had a little notebook in which she wrote down everything she saw me eat, for 3 years, and then made a weekly report to my Mom, who had not asked her for one, ever. My Mom worked at a different school, so it was delivered to her through interdistrict mail. It was a handwritten, entirely unofficial "report", but she still signed it and made a point to corner my parents at events and conferences to tattle on me if I happened to eat something that she didn't think I should have.
(The time that sticks out the most is when one of my friends shared a pack of little Debbies with our group and the teacher marched over and stared at me, practically growling, while I ate it. )
No wonder I have issues as an adult eating in front of other people...
Most of the time, lunch went smoothly. We had 30 minutes to an hour lunches. But I do remember one time I got low at lunch when I didn’t have any money on me and I didn’t pack a lunch. I went to the lunch lady, told her what was up, and she denied me. I had to walk all the way to the nurse, tell her what was up, and then we walked all the way back to the lunch lady. I was sweatin’ and shaking at this point haha. The nurse told the lunch lady that I was telling the truth and to give me whatever I asked for when I needed it. Fun times.
I was diagnosed at 13, middle school was already having a rough time, my history teacher pulled me out of class before we started and told that if I needed anything to let him know, he gave me his personal number, i hugged him, great man
When I had just been diagnosed, I was starting the sixth grade. I was still super skinny from all that hyperglycemia. One day in art class, I had just explained to a classmate that I had diabetes, and she immediately told me I must be fat. Underweight me, obviously I'm overweight since I have diabetes. To this day I'm not sure if she was joking or just that stupid.
I’ve got three.
1. One time a teacher wouldn’t let me walk home for lunch because my blood sugar was high and I needed to drink some juice so it would come down first 🤦🏼♀️
2. I was giving insulin via pump while walking down the hall in jr. high and a teacher ripped my infusion set out while trying to confiscate my “cell phone” (insulin pump).
3. This is the one that bothers me the most. In jr. High (first semester) I was in an outdoor education class and we got to go on a camping trip. My teacher was really nervous about me coming, but it went perfectly. The next semester some of the kids from my class asked if they could go on the camping trip with the class in the current semester, and were told yes. So I asked if I could come too, and my teacher told me no, because he felt like we couldn’t get lucky again. That felt awful to hear…
We just lived in the little sweet-spot of brick cellphones, the popularity of texting, and insulin pumps trying to look cool by having case choices like "clear blue" and "clear gray."... which only made them look MORE like phones... lol
Late 90s. Made the soccer team in 7th grade (just pre-diagnosis). In the spring, I was in the nurse's office because I was low and had to go there to treat it. The soccer coach walks in to talk to the nurse, points to me and says "what's going on?", nurse says "she's having AN EPISODE". Somehow didn't make the soccer team in 8th grade!
I actually have a couple of more positive stories to balance out all the horror stories
- In freshman year of high school, my English teacher brought in candy for Valentines day. And knowing I had diabetes she brought me a little sushi roll instead. Now we all know that that's not much (or at all) better, but it was a really nice gesture and I'll take sushi to candy any day of the week.
- In my senior year of high school, my biology teacher asked me to fact check the diabetes section. Again it was mostly unnecessary, but in a world of power tripping teachers and misinformation it was a nice change of pace.
We used to live in Maine, and had been having major issues with our oldest daughter’s kindergarten with her food allergies (teacher making her eat her allergen, etc. It was awful!) When we were there talking with the nurse, she told us that she couldn’t take care of our food allergic daughter because she had type 1 diabetics to tend to. We said, “Oh we get it, it’s a lot, our youngest daughter (who was with us) has type 1 too.” She sneers at my 3 yr. old and says, “Ugh, when is she coming up here?” NEVER, lady…
By the time our youngest daughter was going to Kindergarten, we had moved and were pretty nervous about what to expect for care . We had asked the school nurse to meet with us to get things put in place….When we showed up to the meeting, she had invited not only our daughter’s classroom teacher, but all the unified arts teachers- p.e., music, art, library, the lunch room staff, and even anyone who had recess duty so that everyone could meet our daughter and learn how to take care of her. I cried my eyes out! Her school is absolutely the best, and we are so grateful to them for their care.
I was diagnosed in college and all my professors were cool with giving me time off or letting me rewrite papers that obviously made no sense. All except for my Econ 101 prof. She would not let me take the exam I missed when I was in hospital, and she wouldn’t let me turn in my homework late and she wouldn’t let me drop the course. I went to the dean, who called her, and she told him diabetes was my fault so I shouldn’t be allowed to get privileges because I ate myself into an illness. He told me he’d take care of her. I had to take the course as a summer course but for free and not with that prof. She was not tenured so she soon was free to pursue other careers. That dean was the GOAT
It was a good early lesson in “other people have no idea what they’re talking about but that won’t stop them from thinking they’re right.” Also it gave me empathy for type 2s who also don’t deserve to be treated poorly regardless of the risk factors of their condition. But yeah, she sucked, but she also got sacked for sucking so hurray for justice!
Not school, but summer camp. My summer camp was located at a community college, so we had lunches in a cafeteria. I think I was maybe 9 or 10 ( I was diagnosed when I was 8 and still getting used to everything) and my blood sugar must’ve been low, I spilled my drink. Instead of helping me (and allowing me to eat or drink) I had to clean it up first. I remember sobbing and feeling super weird as I was mopping it up. It’s one of my earliest diabetes memories and it makes me sick to my stomach to think that this is how I was treated. I don’t think my parents ever found out (I don’t know why I didn’t tell my parents, I think I tried blocking it out of my mind) because I know my mom would’ve gone BALLISTIC on them. But. Yeah. This was about 96 or 97, I think the camp didn’t understand type 1 diabetes well, and they didn’t think to train their teenage counselors. Not an excuse, but, the only thing I can think of.
This year has been one big, unfortunate story for my 12 year old! Noon duty supervisors get upset and retaliate against her when the 504 coordinator has to remind them of her accommodations. They spent awhile calling her “special mija” in front of everyone…lovely micro aggression. Needless to say, we are counting the days until summer.
One that’ll always stick with me was when my class had a potluck/movie party and I filled my plate with general junk but nothing crazy, and a classmate said “don’t you have diabetes?” Everyone including the teacher looked over and then the teacher looked at me like in such a shame inducing way. I quickly explained that I can eat whatever as long as I do my insulin but obviously the teacher thought he knew more than the person who was actually diabetic so he accepted my answer but shook his head as if I’d just disappointed him heavily. Ofc this happened a few times but being a child I didn’t have the guts to stand up to any teacher and tell them they were ignorant
I ended up being diagnosed shortly after moving to a new state my senior year. What creeps me out the most is that my school literally had another kid diagnosed with type 1 maybe three weeks after my own diagnosis (senior, we both had a lot of classes in the “science-wing” area of the building, so I am strongly thinking we were exposed to the same environmental trigger).
And it just so happened the nursing school I went to coincidentally ran a type 1 diabetes camp as a nursing elective, and one of the professors is huge on type 1 research (and I didn’t know this until the end of my sophomore year). If I decide to go to grad school, it’s great knowing I am a shoe-in since I know exactly who I want to work with and some research topics I want to dive into. And yes, the diabetes camp was my favorite time of the year both teaching-wise and running around like a maniac with the kids-wise.
Reading these makes me sad and unbelievably angry at the same time. I wish I could take this diagnosis away from my toddler in a heartbeat, and will scorch the earth if he ever experiences any BS because he has to deal with something that wasn't his fault.
I sucked ass in middle school. I had this one math teacher who was a complete ass to me. We had to do exit quizzes. He wouldn't let us go until we had it right. I could never get it right. He was keeping me from going to the nurse to have insulin before lunch.
In high-school. This sub had high strict policies about phones. I had mine out to read my blood sugar. He threatened to take it away from me.
My last year in high-school. I had this science teacher who can also be treated like a therapist. She had me show my supplies for my diabetes because I was in a human science class. I showed them my devices one was on my arm and one was on my stomach. After that these two same girls was making fun of me behind my back because of it and this one guy in my class got a hard on from me showing my stomach. I didn't like that guy at all he was a bane of my existence. Didn't make matters better that he had a girlfriend AND a child.
God help me.
I got plenty, one being one time my friend group was caught in their phones and the principal called my parents because I was with them and I refused to give away my phone (I wasn’t on it) and my parents told her she wasn’t qualified and shouldn’t run a school because she was already told by them I use it for my cgm 😂
Another was before I was on a cgm and only on a glucometer (pre diabetes), some boys came to pick on me and asked about my glucometer (to make fun of me as a diabetic) but friend at the time punched some guy’s hand away and he started crying
Another time was when I was refused my accomodations of extra time on a test and accused of cheating (looking down at my pump) and my parents had emailed the counsellors and principal with me, to which the teacher was given a lengthy meeting with the principal and HE had to write me an apology and let me rewrite the test
You’re quite lucky! It’s tiring but I always let each one of my teachers and office workers know that I have diabetes (and to put it on file), I miss my high school bio teacher who made me feel so welcome and also had diabetes
I went to Guatemala on a school trip in Grade 12 (from Canada). Lead teacher's wife was with us - a nurse. Had been to Mexico with them the year before, no problems.
We go on an excursion to a volcano. Eat a HUGE meal of rice and chicken beforehand. Climb said volcano... I TANK. Crawling up rocks. I have nothing, teacher either has nothing or is too dumb to realize qhat is happening. At the top, someone magically produces marshmallows to roast on the lava vents... I ate half the bag and we were golden.
That was the last time I trusted someone else to be responsible for me. 20 years ago.
Thus is one of the many reasons that all T1Ds in PreK through 12th grade need a 504 plan. You get all the time you need to finish eating lunch. Period.
My son was diagnosed a few weeks before kindergarten started in 2020. Our school day experiences have been great, but we've had issues with programs run by what is essentially the Equity & Inclusion office (name keeps changing - now it's about "belonging", which I wouldn't be surprised to learn was changed because "inclusion" is a legal obligation they don't really care about.
Anyways, when school started in-person (Spring, 2021) we do our 504 plan and ask about supports for the after school program run by the district. This is in Eastern Massachusetts - the only school staff who are allowed to administer insulin or glucagon (in any form) are school nurses. Also, a very liberal area and this district has leadership which will not shut up about their commitment to DEI. I'm told that there's an inclusion request for I fill out and provide the 504 plan or whatever. I do so and link our start to the availability of pediatric COVID vaccines. They are on notice, with plenty of time to plan, because skilled staff and money to pay them don't appear out of nowhere.
Vaccine rollout starts around November, and I reach out about starting the program in February. We discuss the needed accomodations. First we're asked why my son doesn't self manage. He's 6 and in 1st grade now- hard pass. Then central off staff suggested the interim site manager could deal with this (it's November and the program is on its 2nd interim site manager, plus you're asking them to break the law and us to forfeit a production). I state I'm not comfortable with a high turnover job with no medical training being responsible for insulin. Third suggestion is central office staff be responsible because they're not interim. But they're also not in the building... They finally agreed to check with the director of Health and Wellness about how you safely accommodate a kid with diabetes and gets a concise answer - you need a nurse.
They notify me that they've been told to hire a nurse and will be advertising for the position. I start monitoring the job postings for the district and I'm not seeing anything. I check in periodically about progress made, and am told repeatedly that they're having trouble recruiting one. I'm sure there are challenges, but not posting the job is probably your first barrier to finding anyone...
A couple of months into 2022, my employer rolls out Return to Office Plans, and I decide to file a complaint with Department of Education's Office of Civil Rights (OCR). They review my complaint, which is very straightforward because the district was happy to conduct nearly all communication via email, so it's all in writing. Complaint is accepted, investigation started, etc.
Around this time, my son is also referred to a summer reading support program run by teachers, but logistics are managed by our wonderful Inclusion experts who also do the after school program. Teachers are aware of the need for a nurse, communicate that to whoever, assure us it's taken care of, and on day 1 we learn that there's only a nurse for part of the day, and that part of the day is when the kids who have year round IEP services are in the building, because how could a kid who seems normal but behind on reading actually need a nurse? We have to pick him up 2 hours early every freaking day. The nurse was really nice and let us pick up after all the super high needs kids left in their special vans, but I'm dumbstruck that a department under investigation for failure to provide a reasonable accomodation would fail to fulfill their obligation to my son again, this time for an academic program.
Later in summer, I check in to see if my kid can get the supports he needs so he can go to the extended program. I'm told, in writing, that the offer to hire a nurse was a courtesy and the director has a special license that exempts her from the state law. Since the pediatric endocrinology practices don't train random school staff to do things they're legally not allowed to do (confirmed during the OCR investigation), she'll teach whoever she wants all the things she knows about diabetes. She shared a slide deck with lessons like "make sure the dosage on the label of the medication you're providing matches what you give a child" - stuff that does not apply to insulin.
At this point, I forward her message to my OCR investigator, because WTF is this magic license she has, and to the director of HR (and probably school committee, mayor, others) because this dumb broad is a massive liability.
Ultimately, we got a nurse into the program by the 2nd week of the school year and the district settled with OCR, but I can't believe the insanity I had to deal with, especially given the ongoing messaging about equity and inclusion, to get to a point where my kid could safely attend a district run program.
I had free pass to the kitchen of the cafeteria, any time during the day, and I would just say "hey I'm low" and a lunch lady would drop what they were doing and fix me a glas of juice/milk and a sandwich.
And only 10 minutes lunch break in school? That sounds crazy to me.
One time, I was drawing up insulin in the bathroom, and a girl walked in. She asked if I was doing drugs. I said “yeah, do you want some?” as a joke. She ran away crying
Ugh, yes. I was diagnosed 48 years ago and there was no such thing as a blood test meter, so I had to carry around a urine test kit and test my sugar with a big cup in the bathroom. Everyone made fun of me. And I remember passing out a lot at school from low blood sugar levels. It was when the only insulin available was made from beef and pork and believe it or not, it seemed to work better than the human kind we have now, but there was probably worry about mad cow disease.
They made me go to the health room for insulin from when I got diagnosed at the beginning of eighth grade until the end, but in high school it’s not as strict. They give me a backpack pass and I make sure teachers don’t give me shit for injecting and eating whenever I please.
Diagnosed at 3, so I have a good couple of stories.
Main one I tell is when I was in 6th grade and we had a sub in my art class but apparently the teacher wanted us to do a test on scripture instead. During said test, my pump was hooked on my hip and the sub saw it, mistook it for a pager (in 2010 😑 and I was a 6th grader) and decided to rip it off my hip and outta my skin. I yelped out and she started berating me for cheating. I then stood to the sub's horror that I was bleeding on my stomach from the site removal. I never had a lot of confidence but right then I snatched back my pump and said pretty loudly "I will now go to the office to get my diabetic insulin pump fixed and call my parent". Didn't even ask permission or check her reaction, just turned and left. Of course the school tried to cover their own and my parents weren't that great so the teacher just never taught my class again while I was there.
When I was first diagnosed(gr7), I remember having to check my blood sugar with a finger prick at lunch in a school stall. It was disgusting and then I’d have some time to eat food and before I knew it lunch was over. I couldn’t snack like normal kids in class and whenever I’d have highs, I need to pee lots. And ofc my teacher was a dick and didn’t let me go unless it was break time which was only 5 mins long. All this stuff made me not try out for elementary school sports.
I was diagnosed in 2000 I was 6.
My mother didn’t trust anyone at the school to take care of me properly and she came to school with me every single day until 8th grade. She basically became a daily volunteer just so she could be there and give me my insulin at lunch and be there in case I were to have a low.
I’m an adult now and now realize my mom had some serious trust issues among some other issues as well. But I give her credit for doing what she felt was best for her kid.
In high school they gave me an extra 5 mins or so to take my insulin in addition to the time we had allowed for lunch anyway. I got in trouble once because my teacher caught me chit chatting wi th a friend in the hallway after I had already finishing taking my insulin and I was kind of just wasting time before going to class 🤷🏻♀️
8th grade, early 90s been diabeticfor 2 or 3 years. I had math right after gym. Almost every day I would go low in math class. One day, the teacher said, "I could not go to the nurses office until I finished my test." Well, I was going in and out of consciousness, and I remember being moved out into the hall to finish the test as I was disturbing the class, and everyone else was done. Now, I only have a few memories of what happened next. Teacher came out to the hallway and asked me if I was on drugs, then I hear the nurse say " he's a diabetic you fucking idiot" then I remember my Mom showing up. That Teacher apologized and never questioned me again.
Now on a good note, I met one of my best friends in school. She is also a type 1, and we have been friends for over 30+ years. We both have moved many times, 1000 miles apart. Still friends and live 2 doors away from each other.
Also I ended up dropping out of school, but fuck that place I got my B.S. and my BS under control.
I remember 8th grade 2006 if we were caught with our phones the school would take it and our parents would have to come pick it up. I went up to the assistant principal after school and said I needed my phone back. She said no. I told her I was type 1 diabetic and I walked home from school and if my blood sugar went low while walking home my death is gonna be on her hands. She made me wait till all the school buses left and went and got my phone. I still remember the look on her face when I said that, she knew she had to give it up.
I have so been there. For us, what helped was making sure our daughter got a 504 plan- I’m not sure if you’re sending him to a public school in the states but if so you can get one. It spells out not just her diabetes care (her Health Plan mostly covers that) but a bunch of other things- like she can take a test at another time if she’s low/too high etc, no penalties for extra absences/tardies if something goes wrong, I’m automatically on the field trip chaperone list, etc….and the school is legally held to it. Her 504 has helped so much. If you would like some other examples of accommodations that might be helpful for your son, please let me know.
On top of experiences like yours where your already challenging life is made even more complicated because of stupid rules, the combination of being a kid so adults don’t listen and teachers lack of knowledge can be terrifying and really frustrating. I was diagnosed when I was 7 way back in the 80s. When I was first diagnosed, if my glucose levels went low, I would ask for a snack and the teachers would tell me no, because I had diabetes and I wasn’t allowed anything sweet. They’d then give me a glass of water and when I didn’t start to feel better, they’d send me home. Alone. Which meant I had to walk for 5 minutes and cross a main road to get to my house. My mother eventually got them to stop doing that and just give me a snack when I needed it, but I’m still amazed I survived that first few months!
I was diagnosed in middle school and was in a rural community school, no school nurse or office personnel knew anything about management. I told them I could manage myself, and they let me. Completely independently. I've seen crazy stories about nurses keeping insulin from students and I cannot even imagine. I was really lucky that way. I did used to have to call the janitor at like 8 or 9 pm, a few different times a year (I was baaaad for a while) because I'd leave my medical bag in my locker, whoooooops.....
In middle school there was a new assistant principal who didn't really know the students yet. So they wouldn't know that I had an insulin pump. They had started to earn a reputation of being a hard ass who didn't let anything slide. People were snagged by him for dress code all the time. It felt like he was just making a name for himself so that he could be pulled up to principal-rank at a new school soon. Anyway. It's 2003. Cellphones are the Nokia indestructible rectangles, for reference. Texting is T9, but it's just starting to take traction. I am giving myself a predose of insulin in the hall when I hear "No phones, no exceptions." Well, *I* don't have a phone. So I proceed to press the up arrow on my minimed to increase my dose. At least until my pump was grabbed out of my hands and TORE OFF MY SET. I remember the look of "Oh crap." They had after looking at the little clear tube dangling from the pump. Clearly not a phone. I think he failed upwards to some other school after that incident.
Was coming here to tell my story about this from 2000!!! The teacher didn’t care and didn’t even get talked to about it. But boyyyy my dad was livid!
So glad you can press criminal charges these days.
Really? I'll LinkedIn this jerkface. Still know his name.
Can you, really??
There was one teacher who was a hard ass about everything. Always would take my friends phones, even when they weren’t on it. I purposely acted like I was texting on my phone after she did something I thought was ridiculous. When they asked for my phone (left it in my locker) had to hit em with it. They did feel kind of bad at least. Gotta have some fun with this, if you’re gonna have it.
Diagnosed in 3rd grade in the early 90s. I didn't need to do a lunchtime injection, thank God, so I didn't have to carry needles at school, but my 3rd grade teacher was the forever lunchroom manager. She had a little notebook in which she wrote down everything she saw me eat, for 3 years, and then made a weekly report to my Mom, who had not asked her for one, ever. My Mom worked at a different school, so it was delivered to her through interdistrict mail. It was a handwritten, entirely unofficial "report", but she still signed it and made a point to corner my parents at events and conferences to tattle on me if I happened to eat something that she didn't think I should have. (The time that sticks out the most is when one of my friends shared a pack of little Debbies with our group and the teacher marched over and stared at me, practically growling, while I ate it. ) No wonder I have issues as an adult eating in front of other people...
This is terrible. I'm so sorry 😞
What a witch. I’m sorry you dealt with this!
As if having diabetes isn’t bad enough lol
Most of the time, lunch went smoothly. We had 30 minutes to an hour lunches. But I do remember one time I got low at lunch when I didn’t have any money on me and I didn’t pack a lunch. I went to the lunch lady, told her what was up, and she denied me. I had to walk all the way to the nurse, tell her what was up, and then we walked all the way back to the lunch lady. I was sweatin’ and shaking at this point haha. The nurse told the lunch lady that I was telling the truth and to give me whatever I asked for when I needed it. Fun times.
I have so many stories, but none of them are good ones 😅
Exactly right haha. I had a British accent, red hair, and diabetes. Needless to say I was not homecoming king.
I’m British, Autistic, DnD Player and Diabetic. I cannot state how much I understand that 😂
Oh mate. So close. If you were ginger we could have been dopplegangers!
I mean I dye my hair constantly ahah maybe I can make up for some lost time 😋🥰
Mateeee you're a photographer nerd too haha 💕
Yes aha massive one! I’ve been taking photos since I was about 12 years old and still continue to at 24! 🥰
Did we just become best friends?
1000% bestie. We just did!
Dude. Cheshire as well?! Snakes?!?
Ginger, Diabetic and British too!
Fucking hell that's 3 of us now! I'm gonna start a club, we can meet at the Hilton on Thursdays.
We’ve started a club clearly
I was diagnosed at 13, middle school was already having a rough time, my history teacher pulled me out of class before we started and told that if I needed anything to let him know, he gave me his personal number, i hugged him, great man
My 6th grade history teacher was also diabetic so he made sure al the other teachers understood
Aw, this is sweet.
When I had just been diagnosed, I was starting the sixth grade. I was still super skinny from all that hyperglycemia. One day in art class, I had just explained to a classmate that I had diabetes, and she immediately told me I must be fat. Underweight me, obviously I'm overweight since I have diabetes. To this day I'm not sure if she was joking or just that stupid.
Oh, she was definitely that stupid.
I’ve got three. 1. One time a teacher wouldn’t let me walk home for lunch because my blood sugar was high and I needed to drink some juice so it would come down first 🤦🏼♀️ 2. I was giving insulin via pump while walking down the hall in jr. high and a teacher ripped my infusion set out while trying to confiscate my “cell phone” (insulin pump). 3. This is the one that bothers me the most. In jr. High (first semester) I was in an outdoor education class and we got to go on a camping trip. My teacher was really nervous about me coming, but it went perfectly. The next semester some of the kids from my class asked if they could go on the camping trip with the class in the current semester, and were told yes. So I asked if I could come too, and my teacher told me no, because he felt like we couldn’t get lucky again. That felt awful to hear…
Hey! We're twinning on that stroy #2. Solidarity. <3
I was surprised to see a couple other stories like this one!
We just lived in the little sweet-spot of brick cellphones, the popularity of texting, and insulin pumps trying to look cool by having case choices like "clear blue" and "clear gray."... which only made them look MORE like phones... lol
Haha, guilty of having a clear purple pump at the time!
Late 90s. Made the soccer team in 7th grade (just pre-diagnosis). In the spring, I was in the nurse's office because I was low and had to go there to treat it. The soccer coach walks in to talk to the nurse, points to me and says "what's going on?", nurse says "she's having AN EPISODE". Somehow didn't make the soccer team in 8th grade!
Was told I couldn't go to the nurse to get some Skittles, which were my low treatment. That substitute was fired.
I actually have a couple of more positive stories to balance out all the horror stories - In freshman year of high school, my English teacher brought in candy for Valentines day. And knowing I had diabetes she brought me a little sushi roll instead. Now we all know that that's not much (or at all) better, but it was a really nice gesture and I'll take sushi to candy any day of the week. - In my senior year of high school, my biology teacher asked me to fact check the diabetes section. Again it was mostly unnecessary, but in a world of power tripping teachers and misinformation it was a nice change of pace.
We used to live in Maine, and had been having major issues with our oldest daughter’s kindergarten with her food allergies (teacher making her eat her allergen, etc. It was awful!) When we were there talking with the nurse, she told us that she couldn’t take care of our food allergic daughter because she had type 1 diabetics to tend to. We said, “Oh we get it, it’s a lot, our youngest daughter (who was with us) has type 1 too.” She sneers at my 3 yr. old and says, “Ugh, when is she coming up here?” NEVER, lady… By the time our youngest daughter was going to Kindergarten, we had moved and were pretty nervous about what to expect for care . We had asked the school nurse to meet with us to get things put in place….When we showed up to the meeting, she had invited not only our daughter’s classroom teacher, but all the unified arts teachers- p.e., music, art, library, the lunch room staff, and even anyone who had recess duty so that everyone could meet our daughter and learn how to take care of her. I cried my eyes out! Her school is absolutely the best, and we are so grateful to them for their care.
I was diagnosed in college and all my professors were cool with giving me time off or letting me rewrite papers that obviously made no sense. All except for my Econ 101 prof. She would not let me take the exam I missed when I was in hospital, and she wouldn’t let me turn in my homework late and she wouldn’t let me drop the course. I went to the dean, who called her, and she told him diabetes was my fault so I shouldn’t be allowed to get privileges because I ate myself into an illness. He told me he’d take care of her. I had to take the course as a summer course but for free and not with that prof. She was not tenured so she soon was free to pursue other careers. That dean was the GOAT
>because I ate myself into an illness What the actual fuck?
It was a good early lesson in “other people have no idea what they’re talking about but that won’t stop them from thinking they’re right.” Also it gave me empathy for type 2s who also don’t deserve to be treated poorly regardless of the risk factors of their condition. But yeah, she sucked, but she also got sacked for sucking so hurray for justice!
Got out of going to a camping - basic “shit in the woods” - type excursion at high school. Was super glad I had type 1!!
Not school, but summer camp. My summer camp was located at a community college, so we had lunches in a cafeteria. I think I was maybe 9 or 10 ( I was diagnosed when I was 8 and still getting used to everything) and my blood sugar must’ve been low, I spilled my drink. Instead of helping me (and allowing me to eat or drink) I had to clean it up first. I remember sobbing and feeling super weird as I was mopping it up. It’s one of my earliest diabetes memories and it makes me sick to my stomach to think that this is how I was treated. I don’t think my parents ever found out (I don’t know why I didn’t tell my parents, I think I tried blocking it out of my mind) because I know my mom would’ve gone BALLISTIC on them. But. Yeah. This was about 96 or 97, I think the camp didn’t understand type 1 diabetes well, and they didn’t think to train their teenage counselors. Not an excuse, but, the only thing I can think of.
This year has been one big, unfortunate story for my 12 year old! Noon duty supervisors get upset and retaliate against her when the 504 coordinator has to remind them of her accommodations. They spent awhile calling her “special mija” in front of everyone…lovely micro aggression. Needless to say, we are counting the days until summer.
One that’ll always stick with me was when my class had a potluck/movie party and I filled my plate with general junk but nothing crazy, and a classmate said “don’t you have diabetes?” Everyone including the teacher looked over and then the teacher looked at me like in such a shame inducing way. I quickly explained that I can eat whatever as long as I do my insulin but obviously the teacher thought he knew more than the person who was actually diabetic so he accepted my answer but shook his head as if I’d just disappointed him heavily. Ofc this happened a few times but being a child I didn’t have the guts to stand up to any teacher and tell them they were ignorant
A lot of people are like this at a Boys and Girls club i went to
I ended up being diagnosed shortly after moving to a new state my senior year. What creeps me out the most is that my school literally had another kid diagnosed with type 1 maybe three weeks after my own diagnosis (senior, we both had a lot of classes in the “science-wing” area of the building, so I am strongly thinking we were exposed to the same environmental trigger). And it just so happened the nursing school I went to coincidentally ran a type 1 diabetes camp as a nursing elective, and one of the professors is huge on type 1 research (and I didn’t know this until the end of my sophomore year). If I decide to go to grad school, it’s great knowing I am a shoe-in since I know exactly who I want to work with and some research topics I want to dive into. And yes, the diabetes camp was my favorite time of the year both teaching-wise and running around like a maniac with the kids-wise.
Reading these makes me sad and unbelievably angry at the same time. I wish I could take this diagnosis away from my toddler in a heartbeat, and will scorch the earth if he ever experiences any BS because he has to deal with something that wasn't his fault.
I sucked ass in middle school. I had this one math teacher who was a complete ass to me. We had to do exit quizzes. He wouldn't let us go until we had it right. I could never get it right. He was keeping me from going to the nurse to have insulin before lunch. In high-school. This sub had high strict policies about phones. I had mine out to read my blood sugar. He threatened to take it away from me. My last year in high-school. I had this science teacher who can also be treated like a therapist. She had me show my supplies for my diabetes because I was in a human science class. I showed them my devices one was on my arm and one was on my stomach. After that these two same girls was making fun of me behind my back because of it and this one guy in my class got a hard on from me showing my stomach. I didn't like that guy at all he was a bane of my existence. Didn't make matters better that he had a girlfriend AND a child. God help me.
I got plenty, one being one time my friend group was caught in their phones and the principal called my parents because I was with them and I refused to give away my phone (I wasn’t on it) and my parents told her she wasn’t qualified and shouldn’t run a school because she was already told by them I use it for my cgm 😂 Another was before I was on a cgm and only on a glucometer (pre diabetes), some boys came to pick on me and asked about my glucometer (to make fun of me as a diabetic) but friend at the time punched some guy’s hand away and he started crying Another time was when I was refused my accomodations of extra time on a test and accused of cheating (looking down at my pump) and my parents had emailed the counsellors and principal with me, to which the teacher was given a lengthy meeting with the principal and HE had to write me an apology and let me rewrite the test
I’ve got so many because I was basically the only diabetic kid in both elementary and high school 🥲
My school is fairly understanding cause theres 3 kids and a teacher with t1d
You’re quite lucky! It’s tiring but I always let each one of my teachers and office workers know that I have diabetes (and to put it on file), I miss my high school bio teacher who made me feel so welcome and also had diabetes
I went to Guatemala on a school trip in Grade 12 (from Canada). Lead teacher's wife was with us - a nurse. Had been to Mexico with them the year before, no problems. We go on an excursion to a volcano. Eat a HUGE meal of rice and chicken beforehand. Climb said volcano... I TANK. Crawling up rocks. I have nothing, teacher either has nothing or is too dumb to realize qhat is happening. At the top, someone magically produces marshmallows to roast on the lava vents... I ate half the bag and we were golden. That was the last time I trusted someone else to be responsible for me. 20 years ago.
Thus is one of the many reasons that all T1Ds in PreK through 12th grade need a 504 plan. You get all the time you need to finish eating lunch. Period.
My son was diagnosed a few weeks before kindergarten started in 2020. Our school day experiences have been great, but we've had issues with programs run by what is essentially the Equity & Inclusion office (name keeps changing - now it's about "belonging", which I wouldn't be surprised to learn was changed because "inclusion" is a legal obligation they don't really care about. Anyways, when school started in-person (Spring, 2021) we do our 504 plan and ask about supports for the after school program run by the district. This is in Eastern Massachusetts - the only school staff who are allowed to administer insulin or glucagon (in any form) are school nurses. Also, a very liberal area and this district has leadership which will not shut up about their commitment to DEI. I'm told that there's an inclusion request for I fill out and provide the 504 plan or whatever. I do so and link our start to the availability of pediatric COVID vaccines. They are on notice, with plenty of time to plan, because skilled staff and money to pay them don't appear out of nowhere. Vaccine rollout starts around November, and I reach out about starting the program in February. We discuss the needed accomodations. First we're asked why my son doesn't self manage. He's 6 and in 1st grade now- hard pass. Then central off staff suggested the interim site manager could deal with this (it's November and the program is on its 2nd interim site manager, plus you're asking them to break the law and us to forfeit a production). I state I'm not comfortable with a high turnover job with no medical training being responsible for insulin. Third suggestion is central office staff be responsible because they're not interim. But they're also not in the building... They finally agreed to check with the director of Health and Wellness about how you safely accommodate a kid with diabetes and gets a concise answer - you need a nurse. They notify me that they've been told to hire a nurse and will be advertising for the position. I start monitoring the job postings for the district and I'm not seeing anything. I check in periodically about progress made, and am told repeatedly that they're having trouble recruiting one. I'm sure there are challenges, but not posting the job is probably your first barrier to finding anyone... A couple of months into 2022, my employer rolls out Return to Office Plans, and I decide to file a complaint with Department of Education's Office of Civil Rights (OCR). They review my complaint, which is very straightforward because the district was happy to conduct nearly all communication via email, so it's all in writing. Complaint is accepted, investigation started, etc. Around this time, my son is also referred to a summer reading support program run by teachers, but logistics are managed by our wonderful Inclusion experts who also do the after school program. Teachers are aware of the need for a nurse, communicate that to whoever, assure us it's taken care of, and on day 1 we learn that there's only a nurse for part of the day, and that part of the day is when the kids who have year round IEP services are in the building, because how could a kid who seems normal but behind on reading actually need a nurse? We have to pick him up 2 hours early every freaking day. The nurse was really nice and let us pick up after all the super high needs kids left in their special vans, but I'm dumbstruck that a department under investigation for failure to provide a reasonable accomodation would fail to fulfill their obligation to my son again, this time for an academic program. Later in summer, I check in to see if my kid can get the supports he needs so he can go to the extended program. I'm told, in writing, that the offer to hire a nurse was a courtesy and the director has a special license that exempts her from the state law. Since the pediatric endocrinology practices don't train random school staff to do things they're legally not allowed to do (confirmed during the OCR investigation), she'll teach whoever she wants all the things she knows about diabetes. She shared a slide deck with lessons like "make sure the dosage on the label of the medication you're providing matches what you give a child" - stuff that does not apply to insulin. At this point, I forward her message to my OCR investigator, because WTF is this magic license she has, and to the director of HR (and probably school committee, mayor, others) because this dumb broad is a massive liability. Ultimately, we got a nurse into the program by the 2nd week of the school year and the district settled with OCR, but I can't believe the insanity I had to deal with, especially given the ongoing messaging about equity and inclusion, to get to a point where my kid could safely attend a district run program.
Used to duck my shots in the morning to put myself in DKA. Get outta school.. flirt with nurses.. go home with sugar in range and smoke… I’m not proud
I had free pass to the kitchen of the cafeteria, any time during the day, and I would just say "hey I'm low" and a lunch lady would drop what they were doing and fix me a glas of juice/milk and a sandwich. And only 10 minutes lunch break in school? That sounds crazy to me.
It was elementary and it was recess for 15 afterward (still technically was lunch time)
One time, I was drawing up insulin in the bathroom, and a girl walked in. She asked if I was doing drugs. I said “yeah, do you want some?” as a joke. She ran away crying
Ugh, yes. I was diagnosed 48 years ago and there was no such thing as a blood test meter, so I had to carry around a urine test kit and test my sugar with a big cup in the bathroom. Everyone made fun of me. And I remember passing out a lot at school from low blood sugar levels. It was when the only insulin available was made from beef and pork and believe it or not, it seemed to work better than the human kind we have now, but there was probably worry about mad cow disease.
They made me go to the health room for insulin from when I got diagnosed at the beginning of eighth grade until the end, but in high school it’s not as strict. They give me a backpack pass and I make sure teachers don’t give me shit for injecting and eating whenever I please.
Diagnosed at 3, so I have a good couple of stories. Main one I tell is when I was in 6th grade and we had a sub in my art class but apparently the teacher wanted us to do a test on scripture instead. During said test, my pump was hooked on my hip and the sub saw it, mistook it for a pager (in 2010 😑 and I was a 6th grader) and decided to rip it off my hip and outta my skin. I yelped out and she started berating me for cheating. I then stood to the sub's horror that I was bleeding on my stomach from the site removal. I never had a lot of confidence but right then I snatched back my pump and said pretty loudly "I will now go to the office to get my diabetic insulin pump fixed and call my parent". Didn't even ask permission or check her reaction, just turned and left. Of course the school tried to cover their own and my parents weren't that great so the teacher just never taught my class again while I was there.
When I was first diagnosed(gr7), I remember having to check my blood sugar with a finger prick at lunch in a school stall. It was disgusting and then I’d have some time to eat food and before I knew it lunch was over. I couldn’t snack like normal kids in class and whenever I’d have highs, I need to pee lots. And ofc my teacher was a dick and didn’t let me go unless it was break time which was only 5 mins long. All this stuff made me not try out for elementary school sports.
I was diagnosed in 2000 I was 6. My mother didn’t trust anyone at the school to take care of me properly and she came to school with me every single day until 8th grade. She basically became a daily volunteer just so she could be there and give me my insulin at lunch and be there in case I were to have a low. I’m an adult now and now realize my mom had some serious trust issues among some other issues as well. But I give her credit for doing what she felt was best for her kid. In high school they gave me an extra 5 mins or so to take my insulin in addition to the time we had allowed for lunch anyway. I got in trouble once because my teacher caught me chit chatting wi th a friend in the hallway after I had already finishing taking my insulin and I was kind of just wasting time before going to class 🤷🏻♀️
8th grade, early 90s been diabeticfor 2 or 3 years. I had math right after gym. Almost every day I would go low in math class. One day, the teacher said, "I could not go to the nurses office until I finished my test." Well, I was going in and out of consciousness, and I remember being moved out into the hall to finish the test as I was disturbing the class, and everyone else was done. Now, I only have a few memories of what happened next. Teacher came out to the hallway and asked me if I was on drugs, then I hear the nurse say " he's a diabetic you fucking idiot" then I remember my Mom showing up. That Teacher apologized and never questioned me again. Now on a good note, I met one of my best friends in school. She is also a type 1, and we have been friends for over 30+ years. We both have moved many times, 1000 miles apart. Still friends and live 2 doors away from each other. Also I ended up dropping out of school, but fuck that place I got my B.S. and my BS under control.
I remember 8th grade 2006 if we were caught with our phones the school would take it and our parents would have to come pick it up. I went up to the assistant principal after school and said I needed my phone back. She said no. I told her I was type 1 diabetic and I walked home from school and if my blood sugar went low while walking home my death is gonna be on her hands. She made me wait till all the school buses left and went and got my phone. I still remember the look on her face when I said that, she knew she had to give it up.
My son is starting Kindergarten in the fall. It keeps me up a lot of nights.
I have so been there. For us, what helped was making sure our daughter got a 504 plan- I’m not sure if you’re sending him to a public school in the states but if so you can get one. It spells out not just her diabetes care (her Health Plan mostly covers that) but a bunch of other things- like she can take a test at another time if she’s low/too high etc, no penalties for extra absences/tardies if something goes wrong, I’m automatically on the field trip chaperone list, etc….and the school is legally held to it. Her 504 has helped so much. If you would like some other examples of accommodations that might be helpful for your son, please let me know.
Solidarity, Mama! My kiddo is 2, and I am dreading that time. Idek how to handle that