Sounds like everyone is too busy protecting their interests and forgetting the kids, @Catherine6 . Sure, for many concerns, schools may need to hire more nurses; however, the appropriate standard of care for CWD does not and should not require a nurses – unless they’re also advocating sending nurses home with every child diagnosed with Type 1 diabetes! “Care” predicates that the kids be given the educational opportunities to which they are entitled.
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If my young T1D child attended a primary school, my basic goal would be to keep them reasonably safe. Safety is always relative, never absolute. I would want someone assigned to look after the diabetic needs of my child that is present, observant, and knowledgable. Just as I am at home. That could be a trained professional nurse or just an interested volunteer. But in any case it needs to be deliberately and thoughtfully managed so that a young child dropping low and not directly appealing for help could be detected and treated in a timely manner.
It’s a complicated matter that requires the cooperation of school administrators, teachers, and parents. From reading this article, it appears that some school situations woefully fail to make the grade. Parents and their T1D children deserve more. I don’t think I’d ever buy the reassurance of a school administrator that a 504 plan is not really needed.
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Diabetes is largely misunderstood and this holds true in a school environment as well. During our most difficult time, the principal, who was a member of Caleb’s 504 team and thus should be educated in what type 1 diabetes is, voiced to a former school nurse something along the lines of, "What’s the big deal? What’s the worst that can happen?’ He was of the belief I was an overprotective parent making a big deal about nothing. The nurse responded that it could get serious very quickly and “…I think Lorraine just wants to know that Caleb won’t be found unconscious on the floor in the bathroom.” The principal’s reaction was one of disbelief; he had no idea that anything like that was a possibility. Given the “overinsulinization” (because using the term “overdose” was problematic) we repeatedly experienced, this was indeed a real concern of mine.
The other reality I learned, is that administrators can be blinded by their objective of minimizing liability at all cost. The real facts are not even considered. Their response to us was fight, fight, fight, attack, attack, attack. The depth and quantity of lies we were confronted with still astounds me to this day. No one was willing to acknowledge what actually was happening with regard to Caleb’s care; facts were manipulated and misrepresented to fit their defense. It’s very sad to know that there are people whose job is to educate and care for children whose moral compasses are so lacking.
This is an amazing account. Much of what is detailed is familiar to me. That voicemail message is downright gorgeous. That was the same attitude we were given, although did not have the fortune of such documented evidence.
Wow! What a travesty!
Yeesh, what an appalling story. I can see why the parents would have concluded the DCS report was retaliatory, but I also can’t totally condemn the school officials for not understanding what they were dealing with. Even those of us who have had it for decades are still baffled at times–“Now WTF???” is one of the most common expressions on TUD, as are comments about how difficult it can be to explain it to people outside our world. Just getting them to understand what The Rules are supposed to be is hard enough, but the really difficult thing is how loosely The Rules relate to What Actually Happens. And layering on top of that all the issues about trying to keep the kid from feeling different and wanting her to have as normal a childhood as possible and you’ve got a real recipe for misunderstanding if all the parties involved don’t start from a place of a trust and good will.
The officials obviously got way out on a limb with “these people just want a lawsuit and are abusing their kid to get it!” but I can see how looking at the details of someone else’s treatment decisions might lead you to think they must be doing something wrong if you had no personal experience to draw on. “My god, this kid’s BGs are fluctuating all over the map! [No sh*t Sherlock–welcome to our world] How can they be allowing this to happen!” What a nightmare for the parents to have to explain all that to a hostile or accusatory audience. I’d hate to have to explain my OWN day-in/day-out treatment decisions under those circumstances. I also wouldn’t want to be a school principal having to try and understand all that with a gun to my head in the form of possible prosecution for failure to report abuse. Ultimately my sympathies have to be with the parents–however understandable the principal’s confusion, there are clearly authority issues involved that are familiar to anyone who has had to deal with these kinds of people. But the craziness of the disease itself is all too clearly a factor in this misunderstanding.
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Hilarious that the principal accidentally left the voicemail on the wrong phone. Oops. Must have been a great moment in the household when the parents listened to that.
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I remember school with diabetes. The times the school and teachers actually knew about my diabetes I was treated like a china doll. I hated being treated differently.
Only once was I ever in the nurses office and that was my first day of high school. The nurse called me and my brother (also a type 1) to her office to talk to us about our diabetes and care needs. I didn’t think twice about it at the time but now that I look back I must thank her for actually doing her job and caring to meet us and talk to us about our condition.
In all my diabetic school years I was never not allowed to participate in things. I learned, though, to hide my diabetes. Although I knew my parents told the schools (I changed schools a lot due to moving so often) I was diabetic, I sure wouldn’t tell my teacher and I’m sure on more than one occasion my actual teacher was never notified by the office/nurse. Most of the time my diabetes was just a note in my file and never attended to. I kept quiet because, as I stated above, I hated being treated differently.
In other words, I never felt discriminated against, but I sure was neglected by the schools.
There should be a 504 team identified and all those team members should be adequately trained in diabetes. That could arguably be the most important thing about the 504 plan - that it brings formality and thus accountability by clearly identifying people’s roles and responsibilities to avoid confusion and misunderstanding. So, there is no reason for the principle to have not had an understanding about what he was dealing with. That doesn’t require the principal to be ready to calculate insulin adjustments if that’s not his assigned role. But at a minimum, he should have an understanding of what could happen, the seriousness of it and what the reasonable accommodations agreed to are. That there was fear for the child’s safety on any staff’s part demonstrates disfunction in the 504 team.
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It’s not actually a travesty. It hit the appellate court when the circuit court, who’s decision I haven’t ever tracked down, granted summary judgment, dismissing the plaintiff’s case. The parents (and their attorney…) looked at the facts and said “wait a minute” appealed it and the next level of court reviewed it and made that ruling, remanding it to the circuit court to take the case the rest of the way, continue arguing the rest of the points, whatever they were. I have tried googling “ac vs. shelby county verdicts” but have never gotten a hit so maybe they settled or are still fighting it. There’s a Washington case involving a young mom who unfortunately died due to her insulin pump and the decision became public as her health care was administered by a state-administered hospital so the settlement is out there to find. I’m not sure if we’ll ever find out about this one but I’m rooting for AC!
I am apparently in the minority here. I was diagnosed with Type 1 30+ years ago in the days before Section 504. While my school nurse was informed I had it, she had zero involvement, so all this talk about teachers and school staff being expected to be so intensely involved in BG management and insulin injections blows me away. I can’t imagine trusting people who are spread so thin with so many expectations thrown on them to have a clue about how to help manage a kid’s diabetes, even with good training. It’s hard enough for us to manage it ourselves, let alone expecting someone else to help with it. And as for increasing funding to schools to provide more health staff to help? Good luck with that. My ex was a teacher’s aide for severely developmentally disabled students and was expected to do things like change diapers, clean up the kids if they had accidents, and administer medication, with very little training and spread thin over many students due to constant budget restrictions. I think it’s completely unrealistic to expect school staff to do much here. As soon as kids are able to to check their BG, measure out an injection, give an injection, etc., that needs to happen. Kids are sponges for numbers and new processes, and once they’re 7 or 8 they should be able to do some of the basics to learn to be self-managed, which are skills they will need for the rest of their lives.
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i tend to agree with you here on a lot of things angivan. in an ideal world, there would be a nurse at every school that knew all about t1 and every other medical problem students at the school had. unfortunately its not really doable.
having taught in a primary school, i know there is zero time for anything. it is so hectic and there is a lot of putting out fires and being a bouncer in some classrooms and schools. i only had one kid with t1 and he was in 6th grade, so about 11 years old. he had had t1 for about 8 months when i started teaching there. he had his meter in school and tested when he needed to-when he felt low and after/before recess. there was some glucagon in the principals office but i dont think anyone had been trained to use it.
i was only with him for a period every day and i told him he didnt have to ever ask me to eat, to just feed his lows when he needed to. there was no nurse at the school and his class tutor knew nothing about d. nobody did except for me. the only time i treated him differently was when he was doing an exam for me and had a bg of 48. i told him he could do it the next day, that i knew what a 48 felt like and there was no way he could think with a 48!
There was no other support for this child but his classmates were great. hed been out sick for a couple of weeks the year before with dka and they watched out for him at recess. they were nice kids that way.
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What you are describing are accommodations that are age appropriate for a student with diabetes. This could be all that is deemed necessary by the 504 team based upon the student’s age and abilities.
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I’m wondering then what is the solution for a kindergartener? How is the safety of that child ensured?
Youre right, Lorraine. this worked really well for Rafa, as he could take care of himself when dealing with lows at school. i also taught his younger brother, a second grader. as teachers, we know that having to go to the toilet is catchy-one raises their hand to go and then 7 more have to go. whenever the younger brother, the second grader, asked to go, id always say yes, always wonder, is he ok, is he having that triad of polys, does he have d too, omg, did he ask to go yesterday and the day before, too?
if a young primary student had it, i dont know how my school would have dealt with it. here is spain, there are specialized curricula for cognitively challenged students and students with special learning needs. however i dont know what we would have done had the student affected by d been younger.
my nephew has hemophilia and my brother and his wife have opted to keep him out of preschool because theyre scared. no one is going to take care of him like they know how. it must be really scary to drop your kid off at school when they have t1d or hemophilia or any medical problem that requires special care. my heart goes out to parents with these challenges.
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Thankfully, in the US, there are laws that protect students with disabilities, and type 1 diabetes is defined as a disability for purposes of that protection. Caleb’s needs were different when he was 3 to what his needs are now at nearly 13. When he was younger, every decision needed to be supervised and confirmed consistent with his doctor approved care plan. It wasn’t complicated, but it did take understanding, attention and most importantly caring. Now, people around him need to be trained to know how to help him if he needs it, particularly in an emergency, but he has yet to call upon that need as a middle schooler. Important accommodations for him are that he be allowed to eat in class should he need to, that he be allowed to care for himself in class or wherever he is, and that he be allowed unrestricted access to his phone which is now a medical device and what he uses to communicate with me during the day if he needs to. There are also provisions about testing and his blood sugar needing to be in range, that he cannot be excluded from any activity bc of his diabetes, that nutritional information should be made available for school events, and several other reasonable and appropriate accommodations. But nothing at this stage requires on-going maintenance by staff personnel.
It’s unfortunate that some schools don’t always have dedicated nurses in their schools. That definitely makes caring for a child with special needs more of a challenge. But it does not discount the student’s right to an education. There are many creative ways to ensure a child’s safety which is why 504 accommodations can vary widely from student to student.
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I was diagnosed type 1 in December 1994 in 2nd grade. I went to a Catholic private school, so I didn’t get the run around from the government. My dad would come in and check my sugar and I was permitted to eat snacks as needed in class. I graduated in 2001 in 8th grade (won the citizenship award!) and was going to a classmate’s house for a party. My mom brought me my insulin and needles, and a teacher freaked out. Apparently she missed the memo that I had been diagnosed and taking multiple injections a day for the last 7 years! Then I went to the local high school Cullman High School and things changed. I never really told anyone I was a diabetic until I got my pump. One teacher thought it was a phone and tried yanking it out of me (hopefully not on purpose), my sugar would get low two periods after lunch from a morning P.E. class and I would be afraid to tell the teacher because she probably would not have let me leave class anyway. So I would just sit there with a steady 50 or less then make a mad dash to the vending machine after class and school was over. We finally got a school nurse the second half of my senior year. By then I left after lunch everyday. For some reason I had to check my sugar at break every morning, which was just a couple hours after eating breakfast (9ish). I don’t remember ever being allowed to check during an actual class. Toward the end of my Senior year, the nurse said something like I should try injections or something. That place was getting weird. And on a final note, I have had diabetes 21 years, and I am only now hearing of these so called 504 plans. Never had one. No one ever told me about them. I tried going to college but it was worse than high school. Forget about eating or checking in class. Those professors could give two craps about you as a person. Now I just work hard at my dad’s hardware store and test and eat whenever I have to. I’m tired of being treated like a secondary human.
i teach a 3rd grader with duchenne’s muscular dystrophy. he has an aide who goes everywhere with him in the school. my oldest daughter was diagnosed with a specific learning disability (like dyslexia). she has accommodations in college including extended time for tests and class notes provided to her so she can concentrate on listening during the lecture. public schools give more accommodations that colleges.