I am afraid. T1 child starting school

Type 1 and LADA Parents of Children with Type 1 Diabetes
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As a father of a 3 year old with T1, I am growing more and more anxious about my son going to school. My fear is realized nearly every day as I hear the stories brought home from my wife, a school teacher. It is concerning how routine glucagon is administered, how uneducated the staff–and even the school nurse is about treating T1, how school policy minimizes liability by allowing rampant high BGs, and even the simple act of exclusion when “treats” are handed out in class to almost everybody. Unfortunately, my wife’s protest to these injustices only fall on deaf ears–as only someone who lives it can understand it. It is truly heartbreaking.

My wife and I strive to not let T1 interfere with our son’s childhood. With our Dexcom/Omnipod setup, (aside from the “stickers” he wears) he is blissfully unaware of the behind the scenes 24/7 management we endure. But I am also not naive. With homeschooling out of the question (although tantalizing), I know that I am relinquishing some control, I know that having a good relationship with the school staff is key, but I also know that there are simply unavoidable circumstances that will inevitably occur. It is especially difficult since he is too young to manage it himself.

As unavoidable as it seems, at the end of the day–I just want my child to be treated equally, diabetes to be managed appropriately and my child not to be known as “the diabetic kid”.

If anybody has gone through this, has any suggestions, or opinions–I am all ears.

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We had a situation where her very experienced school nurse made a huge error in dosing. Shortly after dx at age 8, school nurse called us regarding cupcake and cookie for school party. We told her to cut the bottom off the cupcake not to eat the cookie and bolus .5, roughly a half unit. She bolused five units. We picked her up within the half hour as we were going to drive to the city for her endo appointment. While in the car the nurse realized her error, ran out and caught us in the parking lot and we had plenty of time to give her extra carbs. Very good nurse; very experienced, caring. Thereafter, we got her on the pump, I called every time at lunch to verify the dosing the nurse was giving on the pump, i.e, she would verbally announce, I am putting in 40 grams, pump is telling me 4 units, etc. I would then verify if it was okay to go through with the dose. We did that in second grade. By third grade she was dosing herself on the pump but school insisted she go to nurse to do so. She would call on her cell phone and the verbal procedure was carried out so the nurse could document for her records. The point is: I took control of her dosing at school and I saw to it that our DD herself would take control of her dosing. By fourth grade she would dose herself in the cafeteria. Her carb counts were written on her lunch bag but basically she ate 50 grams for lunch. She knew how to carb count for snacks parties. If any doubt she would text me. The nurses in elementary school loved this as it left no room for error. By middle school, she was independent and did not see the nurse, though we had to fight for this. Take control. It only takes about 15 minutes a day. And your wife and you can spell each other out. Our middle school nurse was so clueless it was scary. There was no way I would leave her in her hands.

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Bradford 1, when I have a little more time, I will begin posting installments of our continuing nightmare experiences with my daughter’s public middle school and our school district so that you might begin anticipating what could go wrong.

I’d like to start out by saying that I’m intelligent, well-spoken, respectful, adept at de-fusing adversarial interactions, resourceful at obtaining documentation that clearly spells out my daughter’s rights as a child with T1D, quick to compromise, rarely dig in my heels, choose my battles wisely, and have a good sense of humor. None of these things made any difference in dealing with the public school. I guess I should say that things might have been worse if I did not have these skills and qualities. But I shudder to imagine how much worse it can get than having your child’s school turn you in to Children’s Services not once, but twice: for negligence and child endangerment. Not to mention the school principal confiscating my daughter’s syringes and attempting to take her insulin vial from her. (Here’s where my daughter drew the line, saying something along the lines of “You just try to take my insulin. It’s my life support. If you touch me or my insulin, I’ll have you charged with battery.”) All this occurred with a very well-researched and written 504 plan and physician’s orders. We can’t win for losing with my daughter’s school. As soon as we get one issue straightened out, they call me with another. The latest: her Dexcom alarms are too loud and “disrupt” the class.

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Seems like this school’s administration staff needs “remedial education!”

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I understand, but go visit a school nurses office and ask about how they do things you will be surprised. Really it will be ok. T1 kids goes to school every day, they knwo how to do it and this will be ok

Rick Phillips Ed.D.

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Bradford, im not a parent and so dont have any info or advice to share but i do hope people on this forum can also give you some anecdotes about school and t1d that are positive! there have to be some schools that are doing it right-hopefully!
Good luck to your little boy when he starts!
xxx

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Thank you so much for sharing! Your experience is the exact situation I fear. You are definitely correct that we should take control. It becomes even more challenging when trying to not only calculate carbs in a meal–but when a finicky kindergarten/1st grader decides to not each the entire meal. That is encouraging how early your child was able to take control. A 0.5 vs. 5 unit error just makes me sick. My wife has considered going to the school for lunch boluses, but doesn’t want to be the “overbearing” helicopter mom either. As you said, even when given exact instructions–miscommunication is still a possibility.

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I have wondered what rights my child will have at school. Ideally, everyone would get along and work together–but if you have met school administration (as I know you have) that is not always possible. That is completely ridiculous: [quote=“rgcainmd, post:3, topic:49422”]
her Dexcom alarms are too loud and “disrupt” the class.
[/quote]
A system designed to save her life should be a tolerated inconvenience. I understand compromise, and maybe a smart watch is part of the answer–but the principal of the matter is infuriating. Almost like saying the noise of a wheelchair is distracting…but i digress. I am not sure what a 504 plan is and what rights I have to ensure my son’s safety. And what is the negligence and child endangerment issue regard? You aren’t the first person that I have spoken with to have had that same issue. Thank you so much for your post!

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Scott Benner at ArdensDay blog is an awesome dad and a strong advocate, you might wanna read his blogs
http://www.ardensday.com/search?q=school (the link only contains the blogs about school, but he does other stuff too)
i think the ADA has the rights of a child with diabetes (no discrimination, 504 plan etc) up on their website too.
from what i have learned here the system in the U.S is quite bulky, but once those rules/guidelines are established, kids are usually treated well.
good luck in that journey! tons of us have survived school, so your kid will too :wink:

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I understand exactly what you’re worried about. But the best way to NOT be worried is to (1) understand your rights as a parent of a child who is considered to fall under the Americans with Disabilities Act provisions, (2) ensure that the school’s staff is educated, and (3) use the 504 Plan as a tool to ensure that they manage your child’s condition appropriately.

So, first step: Review the resources on the American Diabetes Association’s “Safe At School” website here: http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/

According to the Americans with Disabilities Act, if your child is in a public school or a private/charter school that receives public funds of any kind, the school is REQUIRED to accommodate his medical needs. That means they must be able to appropriately care for his diabetes. If they don’t have a nurse on staff, they need to have a trained aide whose job it is to follow the care plan — which YOU provide to them. That means you have to be proactive and you have to advocate for your child to ensure they follow your plan. And it may also mean that you have to push them, because some school systems are reluctant — they’re afraid of getting sued if something goes wrong. What you have to do is make sure they understand that the relationship between you and the school has to be a partnership, where both parties are involved in both educating the child and seeing that his diabetes needs are met, and that while they are going to take the lead on educating, and you are going to take the lead on the diabetes care, there has to be a shared responsibility on both fronts. [Or, more crudely, “I won’t sue you if you work with me, but I will if you refuse to.”]

In my school system, when my son started kindergarten, there was a nurse on staff. At the beginning of the first year (and every year since), the nurse, the asst. principal, my son’s teacher, and I had a meeting in which I gave them a very detailed, written 504 Plan document [and I’m happy to share it with you if you’d like to see the kind of information I supplied to them — just drop me an email] describing what I wanted them to do and when I wanted them to do it. I even gave them specific instructions on how to use Eric’s pump settings, because I wasn’t sure the nurse knew how to use it. And I stressed that I wanted the school to communicate EVERYTHING. I even gave them a handy paper form that they could use for recording blood sugars, insulin doses, carbs, etc.

That first year, wasn’t so great. The nurse wasn’t terribly organized and didn’t keep the records of blood sugars and carbs that were requested, and there were mistakes in terms of bolusing on more than one occasion. That nurse wound up being abruptly fired near the end of the year [for reasons I don’t know but I suspect her mistakes may not have been confined to just my kid] and I took the opportunity to have a talk with the Superintendent about getting whoever they hired to replace her trained by my diabetes clinic’s NPs. He took it one step further and had ALL the district’s nurses trains by the clinic’s NPs… which is even better because now they can cover for each other.

My son is now in 3d grade. His diabetes care has been superb. We have a new nurse this year but it is going well because she was hired with the expectation that she would be working with the parents of medically fragile kids like mine — and it’s a darn good thing, too, because where there were 2 kids with diabetes in the school when Eric was in kindergarten, now there are 5.

Advocate. Communicate. Understand who is supposed to do what and what your rights and responsibilities are. Develop a relationship with the people who are going to be charged with caring for your kid so that they have a vested interest in doing the job well. Those are the best pieces of advice I have for you.

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PART 1

My daughter was diagnosed with T1D on January 24, 2014, half-way through 6th grade. Here where we live in Oregon, there is one school nurse per 5 public schools, so the nurse is actually at my daughter’s school for 20% of the time, give or take. There is an “aide” the remainder of the time who has instant access to the school nurse’s help line. Our daughter was the third kid with T1D at her particular school at that time. Our first school nurse, Pam, was an angel! She knew what she was doing, kept in contact with me, and did an all-around great job caring for my daughter’s physical needs as well as her emotional needs as a kid newly diagnosed with T1D. My daughter even enlisted her help in designing a presentation for her classes to educate her classmates about diabetes (both autoimmune and insulin-resistant) and Pam joined her during these presentations. I had a great relationship with everyone at the school involved in my daughter’s care and with the principal, counselor, office staff, her teachers, etc. I took advantage of every on-line source I could get my hands on, including but not limited to the ones Elizabeth6 mentioned in her post above. My daughter’s first endo provided the medical orders; which in hindsight, compared to the current medical orders from her second (and current) endo, were not all that clear/well-written. We had a great 504 plan which provided my daughter with every accommodation I could think of: unlimited ability to use the restroom without asking permission, same for water fountain, was allowed to eat/drink in class, could test her BG at her seat, given extra time to make up assignments after any illness, any testing could be rescheduled if she was running high or low; you name it, she got it. I started reading about quite a few nightmare scenarios other parents were experiencing in their public schools on the Parents of Children with Diabetes forum, and I smugly thought to myself, “These parents just haven’t done their research. They don’t know their ADA rights. They either don’t have a 504 plan in place, or they didn’t take the time to write a good one.” I assumed this must be the case for these “other” parents and that was why they were experiencing problems. I, on the other hand, did my homework and wrote a bullet-proof 504 plan that covered everything, met with all the “players” and established a mutually respectful working relationship. I listened to their concerns and accepted the practical limits of what was actually possible, and compromised. I was certain that was why things were working out for us, but not for “them.” I was so wrong. I had no idea how good we had it that first 1/2 school year after my daughter’s diagnosis (before summer vacation) until the new school year (7th grade) rolled around. With it came a new school nurse…

TO BE CONTINUED

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Yeah, school systems definitely vary. I’ve heard enough from other parents on this forum and others to know that I’m extremely lucky, not just in terms of the positive attitude of my school system, but also in the proactive nature of the pediatric diabetes group that treats the majority of T1 kids in southern Maine. There was a NYT article (http://www.nytimes.com/2015/10/27/health/many-schools-failing-on-diabetes-care.html) about how some school systems fail children with T1D, written about a family that started out in Seattle and had one of those nightmare experiences, and then moved to Maine and have had smooth sailing in the Falmouth school system.

It’s worth starting before your kid gets into school to find out if the administrators are willing to work with you to make their school a safe place for your child—and if they’re not, get help from the ADA to negotiate with them to get them to be willing to work with you.

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Thanks for your post! I had one questions–as I am not familiar with the 504 plan. [quote=“Elizabeth6, post:10, topic:49422”]
whose job it is to follow the care plan — which YOU provide to them.
[/quote]

If my care plan required them to utilize Dexcom and a way to log insulin (for remote viewing), would they be required to do so?

Since using the new Dexcom G5 system I am able to view my son’s BG remotely. He also uses Omnipod, but unfortunately there is currently no way to view IOB remotely. Do you (or anyone) know of a convenient way to be able to view this remotely? I would prefer a way that doesn’t involve transposing to a separate app or program (possibility of transcription error), but would rather a way to get the data directly from the PDM. I have heard of Glooko, but am not sure if there are any other options.

My thinking is that if I know how much insulin is on board and what his BG is, will feel much more confident when he is away at school.

Let me know if you think of anything!

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The 504 Plan is basically a tool you can use for telling the school what’s expected of their staff in handling your son’s medical care. You can tell them what you want, and if there are any reasons they can’t supply it, then you sit with them and negotiate a compromise — one that DOES NOT compromise your son’s medical care or safety. How he gets his care is negotiable, under the ADA; whether he gets it isn’t. They have to provide appropriate care, but the details are for you and the school’s staff/administration to hammer out.

As far as CGM data transmission is concerned, I do not know a lot about this subject (yet), since we’re still in the process of getting Eric a Dexcom ourselves. He was on the Minimed CGM but had to discontinue because he developed an allergic reaction to one of the ingredients in the sensor — which I gather is a pretty common with the first generation Minimed CGM but is less likely with a Dexcom.

In any case, if your son’s CGM is part of his prescribed diabetes therapy (and it is) they can’t actually stop you from using it. In fact, trying to do so could arguably seen as a violation of their ADA responsibilities, and could even be seen as negligent — I mean, if the doctor prescribed this device for a medical purpose, it follows that refusing to allow the child to have it threatens his health. The only thing they really can do is deny you access to their Internet capability, which would stop you from transmitting the CGM data from his sensor to your phone, but I think if you help them to understand its value, they wouldn’t have any good reason to do that.

I do know that it is possible to set this up, though. There’s an organization called “NightScout” that got impatient with the various manufacturers’ refusal to move on this issue and created a CGM hack that enables parents to have their kids’ CGM data put into the cloud in real time. The website is here http://www.nightscout.info and frankly as long as your school has wifi enabled, I don’t see why the school would have any valid reason to object or even be aware that you’re transmitting — you simply set up the CGM to transmit the data and they can’t very well stop you from receiving it. Nor should I think they’d want to. If the school limits access to internet or does not have wifi, then what I would do in that situation is ask them to allow you to install a wifi router in your son’s classroom (with appropriate password etc.) hooked up to the school’s internet account, to be used only for your son’s CGM. You can get a decent router fairly cheaply, and it would be your property not the school’s, so that each year you could move it to his new classroom. That might be where you’d have the most trouble getting them to agree — they could very well consider it a liability and decide it’s easier to just say no.

But many if not most school districts probably already have wifi capability, and surely they’ll be able to recognize the value of having an extra set of eyes on your son’s BG values, and you could argue that it would be useful for the nurse as well because then he or she could be given access to the data and monitor your son remotely too, and only go to the classroom (or have your son brought to the nurse’s office) if there were signs that the blood sugar was going down rapidly or had hiked up too high. For school districts that only have one nurse covering several schools, this would actually be a Godsend.

So there you have it — that’s the sum total of what I know about this subject, but I hope to learn more once Eric’s Dexcom gets approved (fingers crossed!)

As far as logging his insulin intake for remote viewing is concerned, we use paper records ourselves but I don’t see any reason why it couldn’t be done on say a Google doc. If you set up a Google spreadsheet that the nurse could log into and put in the date, time, BG, carb intake and bolus, that would give both you and her/him access to the same data set at any time. Depending on how tech savvy your nurse or aide is, you might have to sit down with them at the start of school and show them exactly what to do — and I would give them a written step-by-step as well in case you have a sub one day — but it’s worth the effort to ensure they know how to handle your son’s care. I’m very hands-on with my son’s school and it has never been something I’ve regretted.

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Applause to your daughter for standing up for herself. It does sound like this is a school that needs some intervention from the ADA’s diabetes educators. An attempt to confiscate insulin and syringes SHOULD be considered battery, if not child endangerment or even outright abuse — because according to my husband, high blood sugars are nothing short of torture, and clearly, the school’s principal doesn’t understand that.