Need help with a school issue

Parents
1

Hi everyone,

I need some help with a school issue.  I currently have a war going on with my heart and my brain and I don't know which one to listen to.  Here is my situation:

My daughter is 13 and in the 8th grade.  She was diag Oct 2008, so we have been doing this for almost 3 years.  When school started we had our 504 plan meeting which of course none of the teachers attended.  The first week of school everything was OK then starting Thursday of the second week Casie started having lows (not big lows just 60's).  Then the weekend we had some more and I started looking at things and thought it was the extra activity and made some minor changes.  Then Monday rolls around (and excuse my language) but all hell broke loose!  She has having 30's and we would get her above 80 but  I was having trouble keeping her up.  She was spending more time in the office than in class.  So I was on the phone sometimes twice a day with her dr and diabetes educator trying to figure out what was going on. So on Friday I get a call from the school they want another 504 meeting on Tuesday. 

 So this is what the meeting looked like:  all the teachers, principal, school nurse on one side of the table and Casie and myself on the other!  After explaining what has been going on with the doctor and what we are working on (and of course the usual you need to be feeding her better and what I should be feeding her) her algebra teacher says the current process is too disruptive of her class, so I made some other suggestions for handling lows and she shot them all down.  She then suggested having my daughter have  a aid that would be in her classes.  Now let me ask you what 13 year old is going to want an adult follow them around, not mine for sure!  After assuring everyone this should be a temporary thing this discussion has been put off for 3 months.  But my heart is telling me to get Casie out of that teachers class.  My brain keeps telling me I am over reacting.  Every instinct in my body is telling me she is going to be trouble.  I mean it is too disruptive for Casie to call the office and tell them that she is low and needs help?  Or that it is also too disruptive for her to get her low supplies and eat them in the class by herself?  I also asked if she could text me if she was having problems, and she turned that one down too.  I really wonder if the problem is having a diabetic in her class.

So what do you think am I being to protective or should I follow my gut and get her out of there?

Thanks for being her and being my sounding board!

Kathy

2

From an outside viewpoint it seems that the teacher is at the heart of this. Most people discount diabetes as a disability. I would try to get her a different teacher, or see if her work can be done in the nurse office, or empty room during the part of the day that she typically has lows. (BTW, my son has crazy lows when he hits growth spurts! Could that be the reason for hers?)

3

Kathy-

Your post made me so angry.

I'm an 8th grade science teacher.  What your daughter's algebra teacher is doing is totally unacceptable.  You have the right to dictate what is on your daughter's 504 plan.  I requested that my 6th grade daughter be able to carry her meter so she can test in class as well as eat/drink as needed for lows.  I feel this is very important since going to the nurse for checking/lows is very time consuming and your daughter is missing very important class time.  There is absolutely nothing wrong with her drinking a juice in class.  Luckily, my daughter's school has been very supportive and agreed.  If they balked at my request, I would have insisted and would have created a 504 which stated that.  

A 504 is a legally binding document that will follow her throughout her life (including the workplace).  You need to set the precedent now.  

I'm trying to give the teacher the benefit of the doubt.  I'm thinking back to how I would have reacted before by daughter was diagnosed.  I know that I wouldn't be nearly as understanding.  

I do not understand, however, how a teacher can NOT be dictating your daughter's 504.  You should be the one dictating.  It is your right.  The school nurse, administrators, and teachers can contribute their thoughts, but ultimately, it is you.  You have the right to bring in an advocate.  They have professional advocates (they're very expensive) or, maybe you can bring in a friend who is knowledgeable about this topic.  

I would love to come in and help you.  I don't suppose you live in the Chicago area.  If you don't, I would be more than willing to follow up with you (or even the school) on the phone.  Please let me know if you'd like my help.  

Claudine Barnhart

jhawk89@gmail.com

4

I was diabetic all through school and never had a problem like what your daughter has experienced.  There's no reason she shouldn't be able to carry a meter and glucose tablets in her backpack and treat lows herself in class.  I was even allowed to do this while taking the ACT test.  

If the teacher really thinks it's that disruptive, then maybe your daughter could sit near the back of the room for that one class.  Sorry you're having to go through this.  

5

Hi Kathy,, I have a son in 7th grade. t1 for almost 3 years.    First i want to say that i m sorry you and your daughter have to go through this.. secondly  those are serious lows.. Is she on a pump?  Are they getting better?  My son just started 7th grade and he keeps his supplies in his backpack with him. He does check whenever and wherever he wants to. We do not have a 504 in place. I went into school health room first day, told them he would be self managing and dropped off extra supplies in health room.. E-mailed teachers and told them if he needs to check to allow him to.. He is not on the pump so he will go to health room to give insulin, but he checks in class or in bathroom when he wants to. I would remove daughter from class if she does not feel safe otherwise i would allow her to walk this journey.. Maybe the teacher could learn some compassion and a better understanding of this disease. I believe, and i may be wrong, that 504 plans are irritating to some school officials,, they do not like being told..etc.. By the way , my son is the first child in my school district that is carrying his stuff. I was told they do not do things that way, and my response was .. well in his case this is how it is being done  and by law they have to let him.. I was nice but firm.. Not sure what will happen if something goes wrong,( low bs), but i will cross that path when we get there.. I keep him alittle high during school anyway, due to gym and football. Im sure your daughter is feeling embarrassed, the last thing they want is that kind of attention.  But the more important issue is her low sugars.. sometimes we do not give fast acting insulin at all, the levemir is enough to hold him within range.. My philosophy is that it  is better to be 200 then 60. my email is kerrirunnergirl@yahoo.com if you need to talk..  kerri

6

Our son is not in school (we homeschool), so I'm may be speaking out of turn.  But I can only imagine how distraught and angry I would be if my son were in a similar situation.  Also, our D-son has a learning disability, and I have been active on some parent boards where 504's and dealing with schools has been discussed in depth.  IF this were my child, these are the steps I would most likely take.

This is clearly not a situation that can be put off; it needs to be addressed immediately.  If your daughter's 504 does not currently include her testing her BG and treating lows in class (or at any other time she is on the school campus), then I would immediately write a new 504 and submit it to the school.  I would also include in the 504 that she must be able to contact you by phone/text at any time to confirm treatment.  See if you can get a letter from her Endo to back up your requirements.

This link includes some examples of 504 plans specifically for diabetic children at specific ages.  specialchildren.about.com/.../sample504.htm  It may give you a better idea of what a "reasonable" accommodation for your daughter would be.  You may

It seems apparent to me that you are going to have to educate the adults who are responsible for your daughter's care while she is at school.  Along with the new 504, I would include a letter to the Principle emphasizing that your daughter has a LIFE THREATENING medical disability that requires careful monitoring.  Give specific information about the dangers of low BG's, including the possibility of her going into seizures if lows (at the levels she has been recently experiencing) are not immediately treated (I'm sure any reasonable person would agree that a child having a seizure in class would be much more disruptive than doing a BG check and popping some glucose tablets).   Provide links to the JDRF website that explains the disease and its dangers.  Emphasize that this is not a "take a pill twice a day and you'll be fine" kind of disease, that it requires constant monitoring and constant adjustment of medications to manage.  And point out that this is NOT Type II diabetes which can often be managed with lifestyle changes, it is not her "fault" or your "fault" that she has it.  I think a lot of people will unfairly judge diabetics if they do not understand the facts of the disease.

With your daughter's consent, offer to come to the school and give a brief talk about Juvenile Diabetes so that the other students in her class(es) understand what she is doing when she tests her BG, why she might need to have some juice or a snack during class, and the dangers she faces if lows are not immediately treated.  If they all understand what she is doing and why, it will become commonplace and will not distract the class.  If you are not comfortable doing a talk yourself, contact your local JDRF chapter and ask if there is someone who will come and do this.

Respectfully give a deadline for the Principle to respond to you, emphasizing the urgency of your daughter's medical needs.  If they do not do that, or if the response is not what you are looking for, I would not hesitate to go over the Principle's head.  Send a similar letter to whoever the Principle answers to.  If that does not work, contact the members of your School Board.  At some point, someone will recognize the seriousness of this issue, and that the School District is opening itself up to liability if they do not provide the necessary accommodations to keep your daughter safe at school.

Again, this is ONLY what I *personally* would do.  Not everyone does "Mama Bear" the way I do, and I feel I have enough personal resources to pull off this approach.  You have to decide yourself how far you and your daughter will pursue this.

Those kinds of lows can be really scary.  Has your endo/CDE figured out what's going on and how to adjust for it?  If your daughter is pumping, does she know how to temporarily suspend her basil when needed?  William is on MDI's and generally only gets those types of lows at the end of a growth period after we have had to crank up his insulin to accommodate growth hormones...like today!  He's been over 200 (close to 300) after breakfast for three days in a row.  I was just ready to adjust his carb:insulin ratio, when today he was low (50's) after breakfast.  Frustrating!  

Please keep up updated on how things are with you and your daughter.

Blessings,

Mo

7

Hi Kathy,

I empathize with your situation.  I am from Montreal, Quebec, Canada and we do not have any system in place for kids with diabetes in school such as the 504 plan/IEP.   My son's school fights us tooth and nail every step of the way.  The principal WILL NOT allow me to attend any training session for the teachers and this past June she told me to discuss with the school nurse anything I want her to cover during her training session.  I called the nurse one week before school started and she said, "What training session?"  In the end she went in a day  before the start of school and gave a brief training.  I went in a week later and spent 20 minutes with two main teachers and the principal and went over a few things and gave them a file folder with some information regarding my son, a document from the Canadian diabetes association, protocol to follow re: low/high sugar, activities, etc...

So yesterday, I emailed the teacher that I need to know about the all day activities planned for today (this is one point I told them in the meeting that I need to plan for his food, insulin, etc...when activities take place) as it is a special celebratiion day with activities all day.  She emailed me that she will get back to me regarding how much activity will take place, whether it is inside or outside (at park, etc...) as he would have to take his fanny pack if leaving school grounds.  

Of course, SHE NEVER GOT BACK TO ME and my only saving grace is that it is raining today so they are doing the activities in school so hopefully my son will be okay and monitor his sugar.

I have really spoken to any parents who did not have an issue with the school.  I don't really think they realize the stress and responsibility that comes with being a parent with a child with diabetes (and I am a diabetic myselt!!!).  I think it will take a true emergency for the principal to see how serious diabetes is.

Take care,

Jodi