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Middle school growing pains

Discussion in 'Parents of Children with Type 1' started by roo'smom, Sep 12, 2013.

  1. roo'smom

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    Need opinions please...
    DD just started 6th grade - middle school - lockers, changing for gym, changing classes, etc.
    She had been at the same elementary school since K, so the nurse was VERY familiar with her and how we treat. In 5th grade she really only went to the nurse after lunch for help with counting carbs (she very rarely eats her entire lunch and is not good about gauging how much she truly did eat). She tested and treated in the classroom, unless it was a very stubborn low, and then she would go to the nurse. She was allowed a cell phone to text me BG's etc., or she would use the classroom phone to call me or the nurse. We had all the requisite paperwork on file - DMMP, 504. However, the nurse understood that diabetes is a very individual disease and different people react differently and treat differently (at one point she had 9 type 1's there). Obviously, we had a very good working relationship with the nurse.
    Now, we're at a new school and this nurse is very by the books. She wants EVERYthing spelled out in the orders - temp basals, you must treat with 15 CHO, wait 15 minutes and recheck, etc. DD has permission to self carry/treat (I pretty much had to sign my life away in order for her to do this), but now the nurse is saying that if she tests in class and gets a number outside her specified range (70-250) she needs to come to the clinic to treat it. The whole purpose of testing in class is so that she can treat in class. We came to the compromise that DD will call the nurse from the classroom (using the landline in the room) if she is below 55 (after treating of course). DD also still visits the clinic after lunch for help with counting carbs, which the nurse balked at, saying that she should be getting away from that. That is the part she needs help with. I trust her judgement on testing and treating, but not on carb counting.
    I would like DD to be able to use her cell phone during the school day to text me and the nurse her number. If she needs help with what to do in that situation she would put a ? after the number and I would tell her what to do. If she's just letting us know the number there isn't a ? after it, just the BG. The school is adamantly opposed to this. "Other kids will ask her why she gets to use a phone and they don't". OK - she'll tell them that she has diabetes and needs to text her mom. I'm sure other kids notice that she has to poke her finger, and wears and insulin pump, and they don't.
    We all know that a BG is just a number, and the same BG will be treated differently in different circumstances. A 65 right before she eats lunch isn't a big deal - knock off 5 carbs from the lunch bolus. A 65 an hour after she eats, with insulin on board is a whole other ballgame. The nurse just sees the number, not the bigger picture, and would treat both of those 65's the same - as the orders say. I get that the nurse doesn't live with diabetes 24/7, so she can't get it the way a parent does, which is why I'd prefer to be the one helping DD with her decision making process.
    I don't want DD forced to follow one treatment plan at school, and another during the rest of her day. That can get confusing. I also want to minimize her time out of the classroom, and allow her to be "educated in the least restrictive environment" - taken from our 504 rights and procedural safeguards. I guess what I'm wanting opinions on is am I expecting too much from the school/nurse by wanting less involvement on their part and more on mine?
    Thanks for muddling through if you made it this far :eek:
     
  2. CAGrandma

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    Sounds like you have a good plan that the nurse doesn't want to agree to. I don't think she has the right to overrule you. It's a pain, but remember that what you set now will follow your daughter through high school.
    Why are people so ignorant?
    You may have to get more people involved. ADA, 504 coordinator, etc.
     
  3. Christopher

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    I don't think the nurse is being ignorant, just very rigid. But I do think she is overstepping her boundaries. YOU are in charge and she is there to execute your wishes. The sooner you make that clear to her the better. It doesn't have to be confrontational or mean, just matter of fact. This is the law, this is the way we want you to help us manage her diabetes at school. Period. If she continues to be oppositional, then you will need to go to the Principal or other school officials and ask for their help in educating the nurse on her role. If they won't do that then you will need to escalate to an outside resource (ADA, Lawyer, etc). I would do it in that order because you are going to be working with this nurse for at least the next several years and you want to try and maintain some kind of positive relationship, if possible.

    Good luck!
     
    Last edited: Sep 12, 2013
  4. mmgirls

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    I am not sure I agree. The nurse would be oversteppig IF she listened to the parent and did something that is not covered in the Doctors orders. The Doctor has not said that the student may be independant and the parent states that her dd does need assistance at school.

    If you want very specific orders for your dd then you need to msk sure that the doctors orders read that way when you have a school nurse that is by the book. You need to go beyound the standard "school forms" and have the endo write "individual orders" for your dd. She will not chance her nursing license doing something that is not in doctors orders especially with a new student to her.

    It is a hard spot to be in, new school, new nurse, and a kiddo that is not yet totally independant. I think it is unreasonable to think that you will be able to do everything you want to happen without having a sitdown first with the endo and create orders that are clearly specific with expectations of what your daughter will be independant with and what assitance your duaghter is to get from the school nurse. then the nurse will have to work with the Doctors orders to creat a health care plan,and THEN have a 504 meeting to cover the accomdations that will be needed to make the whole plan work.
     
  5. mmgirls

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    If you want your dd to rely on YOU for help with Diabetes managment and only have the school nurse be a go to person when needed, then I think you need to not rely on the school nurse for assisting with carb counting.

    Can your dd take a picture of her meal before and after and then text you with what she thinks the carb count is and you can assist her?
     
  6. ChristineJ

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    Her role is to work within the scope of nursing practice. As such, she needs to have MD orders that inform her of what diabetes care is to be provided. I don't think she's overstepping her boundaries at all. I think she's practicing smart nursing. :cwds:
    I agree with this. If there are specific things that the OP wants to happen, such as the child being able to independently test and treat, then the MD orders need to be clarified to reflect that. IMO, since independence from the nurse is desired in other areas, the suggestion to have the child take pictures of her food so mom can provide the necessary help with carb counting is a good one. If for some reason that won't be a satisfactory arrangement, then the MD orders and IHP should be clarified to specifically state that the child needs assistance from the nurse to count carbs but may independently test and treat hypo- and hyper- glycemia.

    Christine
     
  7. roo'smom

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    Thanks for the different insights - I can have a difficult time seeing things through other's perspectives.
    My dd has orders to self carry and self treat - all of the forms that the school/doctor require. The nurse is now interpreting the self carry/treat form as self test in the classroom and come to the clinic if outside a "normal" range. In my eyes, that's defeating the whole purpose of the self carry/treat orders.
    I don't envision the relationship with the nurse as being all or nothing. There absolutely are areas where my dd will need assistance - estimating how much she ate of something is one of those areas. I would be absolutely ok with her texting me a picture of her lunch, but the school won't allow her to use her cell phone during the instructional day.
    I know there is going to have to be some give and take, I guess I'm just having a hard time figuring out where it's worth it to push for what she's like to do vs. what the school/nurse says she should do.
     
  8. Christopher

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    I guess I should have been more specific. The bolded part is where I thought the nurse was out of line. It is not up to the nurse to determine at what point the child should or should not need help with something related to her diabetes.
     
  9. momtojess

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    I think what you are asking for is completely reasonable. Diabetes is not a black and white type management. Like you said a blood sugar of 65 is not treated the same going to lunch as it is an hour after. A dr can not write orders to cover every different scenerio.

    I also agree with having your child miss as little class time as possible by testing and treating in the classroom.

    Maybe you can compromise with a broader range in the dr orders? Instead of going to the nurse anytime she is not 70-250, something like she can treat the 1st time in clinic and just call down to the nurse and if the recheck of a low isn't into range then she would go down there? If she has orders to self administor then there is no reason for her to go to the nurse for a correction.

    We had a very "by the book" district nurse that made things pretty diffiuclt for a few years. I ended up writting dr orders that custom fit my daughter and then the dr signed them. Thanksfully, we have a new district nurse and they accept the generic dr orders that say parents make all changes.
     
  10. ChristineJ

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    OK, so if you already have orders for independently testing and treating that's a plus. In your OP you mention that you came to a compromise that your DD would call the nurse from the classroom when out of range. Does it seem like the nurse is satisfied with that piece of it, and that specifically won't continue to be an issue? If so, and the school won't allow her to use the cell to contact you, then I would recommend asking Endo to specify in MD orders that DD "needs assistance from school nurse for carb counting". That should resolve it. If she has an MD order to provide the assistance, then it needs to happen no matter what her personal opinion about it.

    Christine
     
  11. ChristineJ

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    Yes, I agree. It's not up to the nurse to make judgment about the child's level of independence in any particular area. Every child progresses differently, and they each need to have their needs met as they are, not at a level that someone decides they should be at.

    Christine
     
  12. mamattorney

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    I guess my question is, how sophisticated/independent is your daughter in the "treating" part of the "independent test and treat"?

    If she's not allowed a cell phone, she's going to have to use her own judgment as to what that 65 means while she's in class. There won't be anyone prompting her through all the steps of - is this a plain old 65, a 65 twenty minutes before lunch, a 65 with 4 units of IOB, etc.

    Are you OK with that?
     
  13. mmgirls

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    If you want your dd to be able to use a cell phone for diabetes, then you need to have a 504 meeting to get that accomidation. There will be other times that she will need to confer with you about her BG when it comes to academic tests and field trips and other things that come up in the day of a middle schooler. So get the use of a cell phone in a 504.
     
  14. ChristineJ

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    She can ask for that accommodation, and should if that's what she wants, but that doesn't guarantee that the school will agree to it. I'm curious if anyone has any information that would support having use of a cell phone as a "reasonable accommodation" on a 504. I think that would be good information to have, especially for people whose schools are not as easygoing with things.

    Christine
     
  15. roo'smom

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    She had the use of a cell phone written into her elementary school 504, but we just had a meeting to review it for middle school, and the school dug their heels in on using one during the instructional day - flat out "no".
    I am 90% comfortable with her decisions on dosing and treating lows - it's that 10% that I'd like her to be able to contact me.
    I suppose I have to decide whether it's worth it to fight for it and be "that" parent, although I already seem to be "that" parent, since the other diabetics in the school test and treat in the clinic.
    I feel like it's my job as a parent to follow my dd's lead as to what she can and can't handle regarding diabetes (and life in general), and to give her the support she needs along the way. There aren MANY things she can't do right now - give a shot, put a site in, change her cartridge, decide whether she ate half her sandwich or 2 bites :rolleyes: - and that's ok. There are things that she is confident in doing - knowing when she feels low and treating it, deciding that she needs a snack before she exercises, temping her basal up or down depending on the circumstances. Will she make mistakes? Absolutely. Ugh, I just wish this disease was black and white - if x, then y, but it's more like if x, then y, or t, or q and m, but maybe j.
     
  16. ChristineJ

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    Is this in the same school district as the elementary school? Is the 504 coordinator the same or different? I'm not positive, but I'm not sure that they can legally not honor an accommodation once it's in the 504. That may be something you want to contact the ADA about.

    I applaud your view about following your daughter's lead. Each child is a unique individual, and it's our job as parents to meet their individual needs rather than plug them into a "cookie cutter" formula. It sounds like you're both doing great! :)


    Christine
     
  17. TheTestingMom

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    The elementary school told us the same thing about DS's cell phone. I called the Endo and spoke to the CDE, she wrote it into his doctors orders without hesitation.

    It reads something like this....

    Please allow CWD to carry his cell phone on his person while at school, he will keep the phone on vibrate and will use it only to contact his parents to report BG / ask questions about his diabetes.

    It's signed by his doctor.

    Once I gave that to the school they didn't have anything else to say to me. When he moved up into middle school it wasn't an issue. I will say that I felt it was really important that it was clear that he can keep it on his body and NOT in his backpack.

    Good luck!
     
  18. Sarah Maddie's Mom

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    Middle school administrators are just one step north of prison guards, imho. Our dd had a phone, brought from the intermediate school 504 ( think she got the phone in 4th grade). If you want her to have a phone, if that's your method of managing your dd's chronic medical condition have her endo write a note to that effect and when making the argument to the school repeat the wording from your OP about all the other ways your dd isn't exactly like her peers and revisit and amend the 504.

    Good luck.:cwds:
     
  19. mamattorney

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    I would think that they could remove an accommodation year to year. Some kids have aides in the classroom when they are young and I'll bet after a certain age, even if the parent wants to continue with the aide, barring extenuating circumstances, the school could say no.
     
  20. ChristineJ

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    Yes, certainly the school could say no. But my question is if they can do that in a way that leaves the parent without recourse. The 504 is supposed to be an agreement between parent(s) and school regarding the accommodations needed to allow the child equal access to education. If the accommodation has already been part of the 504, I don't believe the school could just say no, and that's that. My thought is that the parent would have a strong leg to stand on when fighting it. Particularly in a case like this, where a cell phone becomes *more* relevant to the child's needs as they gain independence with diabetes management. But, again, I'm not certain of the particulars, which is why I suggested contacting the ADA for clarification.

    Christine
     

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