Tell me some of the problems you have had with the school and your child.And what did you do about it.My daugter is 8 and she was diagnosed Sept.2008.I have had all kinds of problems with the school.Some of the problems I have had is:A teacher checking her blood and seeing that its below 80 and giving her a snack,then juice,then another snack.Her number went to 300.Another problem I have had is not giving the right amount of insulin,they are experementing with it.Not giving her snacks when she needs them.Sending her to lunch late and then she does not have time to eat everything to cover the insulin she has taken.Checking her blood twice in a hour at the end of the school day.I have talked to the nurse at school about these problems but its like talking to a wall.
What state do you live in? Get a 504 Plan. Here is a good link: http://www.diabetes.org/advocacy-and-legalresources/discrimination/…
It will give you a chance to speak with all of them at 1 time. Here is another good booklet that was recommended to me:
http://www.jdrf.org/files/General_Files/Life_with_Diabetes/2008/Sch…
I think the second one has been the most helpful.
I am dealing with a High School and my daughter is more self sufficient (She can take her own insulin, calculate how much, and check her own blood.) I felt like this booklet dealt more with Grade School Children. SO I think it will be really really helpful to you.
I hope this helps.
Also have you contacted JDRF? I have a person that I talk with there. She was very helpful in the very beginning. She also had a child that was diabetic. I think that they try to team you up with someone who has been there done it kinda thing.
I was diagnosed at age 10. I always checked my own blood sugar and carried all my supplies on me in my little kit - the thought of a teacher pricking my finger would have freaked me out. I usually had music class just before lunch and needed to take my insulin during it, so my music teacher let me go into a little supply closet everyday to take care of it. The nurse really fought that and requested that I keep my syringes and insulin in her locked cabinet, but my mom fought it and I was allowed to continue. I was a little older than your daughter so I was able to make all insulin decisions myself.
You need to document every time that their actions cause some kind of insulin reaction. Pick your battles and make some concessions. They can send her late to lunch if discipline or instruction require it, but they have to let her stay at lunch longer. (I was allowed to take more time in high school if I needed a longer lunch.) It’s okay if they test her too often within reason, I would say. (Heck, I test 12 times a day.) Unless they are stacking insulin doses.
But what I think you CANNOT waver on is that they follow the rule of 15 (or a reasonable equivalent) when it comes to treatment of lows. Or require that they test her an hour after they correct via food to catch rebound highs. Do you have a strict sliding scale for high corrections they can follow so that they understand how much to give her? Why are they so bold as to experiment with her insulin doses???
I agree that you should contact the JDRF in your area. They will be your advocate.
And, although the diagnosis is new and she is young, it’s never too soon (in my opinion) to teach a child to test themselves. I’ve seen kids as young as 4 or 5 who do it themselves. Neither of my parents ever pricked my finger or gave me an injection in the 18+ years I’ve had diabetes. Though parental or trained adult overseeing is crucial with dosing the insulin, of course. But every child is different and your daughter will have to be ready for the responsibility.
A 504 Plan does not guarantee you will not have to fight with the school. After three years of diabetes had to fight with the nurse repeatedly to continue the right to manage E’s diabetes over the phone. We have her call us on the phone at lunch, before and after gym and before the bus to manage blood sugars and make any changes necessary. Sometimes we may have to give a temp basal or more of a correction. The nurse insisted there can be no adjustment of insulin without “doctor’s orders” every time. In our 504 Plan and initial doctor’s orders it stated that it is we who adjust her insulin and/or her pump. We make the decisions. We only see the endo once every three months and she goes over things then. Wrote up a daily care plan to make it easy for the Nurse in the unlikely event she could reach neither of us. Nurse faxed it into the endo and disagreed with it, leaving us out of the picture. Many calls behind our back to nurse and endo giving her side of the story and at one point endo agreed with nurse. Endo was not getting the facts. Finally got new doctors orders stating E. was to self manage her diabetes with her parents over the phone and faxed her pertinent pages of the 504 Plan that had been in effect for three years. Her response: “Where did you get THAT Plan? Off the INTERNET”!! I would love to let the nurse handle her care during the school day and go about my business but when I have a nurse that instructs her to add the 15 grams from the juice she just drank to bring her up from a low of 55 to her lunch carbs and bolus for it (then repeatedly denies this) or does not call me when instructed and sends her to class directly from gym with a blood sugar of 88 and 2 units of insulin on board insisting “doctor’s orders say 80 and 180 is in range,” well, I will be communicating by phone four times a day until high school, thank you very much!!!
I have been extremely lucky working with the school district in dealing with my daughter’s care. I have found that most people – medical personnel included – don’t know much about diabetes management unless they are specifically linked to it through their personal life or professional life. I once had a nurse on the pediatric floor of the hospital ask me if my daughter’s pump was her only surgical procedure.
Because of most people’s ignorance regarding diabetes, I set up a meeting with my daughter’s principal several months before she began school. At the meeting, I outlined my concerns, her daily needs, and what I felt was required to make her school day successful. From there, the principal enlisted the nursing staff and we had another meeting where we discussed a 504 plan. Then, the week before school actually started, my daughter and I met again with the nurse, her teachers, the alternate nurses, and the principal. We demonstrated how to use the pump, how to change the set, what her daily routine was, etc… Although my daughter is only six, I felt it was very important for her to be a big part of the meeting so that she felt that she could be heard when she needed something.
Now, her management is done through a notebook. We write down everything – BG readings, carbs, questions, moods, etc… We also talk on the phone about 3-4 times a week. It has worked well. I think, for me, the key was keeping everything very positive and trying to make everything as easy as I could – i.e. educating everyone who would listen!
Good luck.
I would like to add to my prior post that we have just transferred to Middle School from Elementary School. E. had three incredibly supportive and accommodating school nurses and we never had a problem with any of the school nurses. In fact, it was our last school nurse who felt that bolusing over the phone would make her more independent, plus it would be a continuation of the way we normally do things with her. She goes to acting camp in the summer for six hours a day, plus takes acting and dance lessons a few times a week. The school nurse in our state has a nursing board who may or may not stand behind her. Even with new doctor’s orders, she questioned our right to handle things our way. I guess she is concerned about her license. What she does not realize is that I am the best friend her nursing license ever had. We educated her repeatedly and had a “Daily Care Plan” even a monkey could follow. Basically, the daily care plan said “call us and we will handle it. If you can’t reach us, her blood sugar should be THIS before lunch, THIS before gym, THIS after gym and THIS before bus.” This is because she can’t and/or won’t deal with the concept of insulin on board in relation to a low blood sugar or a blood sugar after gym that is in range, but lower than it should be because of IOB. Oh, and we do have a pump. We even had problems with the endo because she felt the blood sugar number before Gym was too high, although endo has little experience with her blood sugars and repeatedly congratulates me on her control. Since nurse faxed endo the “Daily Care Plan” I had to argue with the endo over the coverage with carbs before and after Gym and she did not want to sign off on it! She drops a hundred points during gym even with the pump disconnected. Of course in the care plan, which is to be used only if we cannnot be reached, I err on the side of the numbers being a little bit on the high side, a little bit. Well, four months of crap are finally over and she begrudingly hands the phone to E. at lunch. Though I can still hear her commenting and sometimes interrupting E. in the background, LOL. P.S. No problem with getting a lawyer, only by the time this hits the courts she would be out of highschool, let along middle school. P.P.S. We have had a very comprehensive 504 Plan in place since diagnosis. We met with the nurse prior to school, and have reconvened 504 twice already. Nurse is a know it all who unfortunately does not know much, did not read her 504 Plan, questioned the legality of the provisions of the 504 already in place, forgets what we told her, will not follow a simple one page daily care plan to be used in emergencies, did not agree with bolusing over phone, grabbed the phone and actually refused to put E on the phone to me, stating, “You are not treating E. Actually, I am treating E.” Nurse feels it is her license and she has all the authority while E at school. Have heard about this nurse from another mother of a child with diabetes. Nurse is a very nice person, really sweet, just incredibly stubborn and wants things done her way. Things are now proceeding the way they always have been and there is a temporary truce.
I understand your frustrations with the school. Prior to my daughter being diagnosed, I worked as an advocate for children with autism spectrum disorders. I’ve seen my share of ugly fights over childcare and rights in the school district. I still feel that the best way of meeting a child’s needs is by developing a working, cordial and respectful relationship with the caregivers, if at all possible.
That said, there is certainly a place for lawyers and advocacy. I’m not certain how child advocacy works in your state, but in mine, the accommodations made for your child would be the priority before ever setting foot in a courtroom. The lawyers would work with the school a.k.a. tell the school what they are required by law to do, and if the school didn’t make the corrections, then further steps would be taken. If you need assistance frpm advocacy, there is usually an office in the Department of Education who will listen to your needs and offer legal advice. I’ve met families who have received this legal advice without having to pay for it.
School districts typically don’t want to go to court over a 504 plan or questionable care of a child.
I agree with all of you.My daughter numbers have been better for now so I have not really had to many problems since I post this last.I have talked to my RN nurse about these problems and she said the school wil do what they think is fir for them.I do not feel that is right but right now all I can do is try to keep my daughters numbers good and if she is going through a stage of lows keep her home until she gets back on track.I know that is not the best solution but for her safety and from me worring and getting upset it works.The problem is the schools do not want to deal with problems children have.Its alws been like that,its to much for them and they want the problem to dissapear.My son is 14 and he is ADHD and the first thing the school said was get him put on medicine or we can not help him.We did not want him on medicine at that time because he was only 5But to please the school so they would help him we had to put him on medicine.I admit now that he is a teenager he does need it now but back then he was only 5 years old.With my daughters situation it is more mportant that the school does what i ask so she does not have any problems,but its like talking to the wall.So I do what I feel is est for her even if it means not going to school for a couple of days.My daughter does keep me updated on what the school does with her shots,snacks and tells me whenever they do something not right.I believe my child before I will believe the school.
We have been very fortunate with the care Sean receives at school. He is in 4th grade, has attended 2 schools in our district and both nurses have been truly incredible. All of his teachers and administrators have also been extremely supportive (ironically one of his principals has Type 1 so talk about having an advocate!).
Sean is one of four students with Type 1 in his school (three 4th graders and one 5th grader – all pumpers) so the nurse has her hands full. I have a 504 type plan in place which I draft each summer and review with the nurse and teachers prior to the start of school. The nurse (not the teacher) supervises all testing and administers insulin/corrections per very thorough and specific Dr’s orders (e.g., if low, how many glucose tabs to give, when to retest, etc, etc…). These four kids have the same endocrinologist so the protocols are all very consistent for nurse’s sake. But the kids are certainly all individuals, diabetes and personality wise, so they keep her on her toes.
One new thing the nurse came up with this year is an individual interactive Google Doc for each of the students with diabetes. It is similar to an Excel spreadsheet but it’s a collaborative, real time interactive document. I keep my laptop on all day on my kitchen counter and I can just look over at this Google Doc and see what Sean’s numbers are all day long. She records BG, carbs, insulin, corrections, notations, etc. It’s really fantastic. I log Sean’s AM number and breakfast carbs & bolus so she can see where his BG is when he arrives. She sends non-urgent messages like “I’m going to need more strips next week”, etc.
If you have a situation where your nurse might be willing to do such a thing, I highly recommend trying it. It really puts my mind at ease. I am blown away by the fact that some schools don’t even have nurses, so I truly count our blessings. Good luck, Ginny. I’d be happy to talk to you more about how we handle things if your interested.
Update on School Nurse. After reading E’s 504 Plan, calling our endo again and, I imagine, checking with NYS Board of Ed, she has changed her mind and is fine with E self-managing over the phone with us. She is still keeping her eye on her and is now working with E. to help E. learn how to manage during the school day. There has been a complete 100 percent reversal and I foresee no more problems this year. So things are looking up!!!
P.S. Ginny, I hope you put a 504 Plan in place. Without it, the schools have no legal guidelines that they must follow and the parent may have little input. Then with the 504 in place, you can force the school to follow it. It is a legally binding document. Good luck!