504 Meetings

I have a question about how often you have a 504 meeting with your childs school.  My daughter was diag almost 4 years ago.  I have insisted on a meeting every year.  I have asked some parents of type 1's that go to my daughters school and said they only had one the first year they attended a school.  I thought you were supposed to have one every year?  What about every one else what do you do?

My 11 year old is new to T1 so this is her first year in school.  I started with a sample 504 and the school kind of freaked.   So I just went with their health plan, but made them allow what I was asking.  I asked why I shouldn't do a 504 and they told me there was no need.  But they know I know about 504's and they are allowing stuff no other child has done at this huge school before, like checking her sugar in her classroom vs. the office.   So, I am totally prepared for a 504, but haven't yet done one.  But if I were in your shoes, EVERY year would be very responsible and expected.   New teachers, no doses, etc.  Of course every year.  

Yes, there should be one in place every year according to my son's medical social worker. He'll have new teachers every year which will need to be apprised of his situation and special needs. He's at a new school this year so we've only had his last school and new school to compare but from what his school this year tells us, the first one is really the big meeting and then every year after that until he changes schools is more of an updater-type thing...just to see if anything changed. (We had to insist on one last year  because his school didn't want to do one either, and it was a big battle that ended up with the school board, but in the end it worked out best for our son because whatever agreements we had with his teachers before we finally got a 504 in place, didn't fall over into the substitute or replacement teachers).

It kind of depends on the age of your child too.  I was diagnosed a long time ago, before 504 plans.  From Kindergarten through 3rd grade my mom would meet with the teachers and school nurse every year.

From 4th grade on I handled it myself and my mom was ready to step in if I had any teachers who wouldn't allow me to do what I needed.  My teachers were always cool and I didn't have a problem.  

We also meet at the beginning of each year.  Our daughter was diagnosed in 6th grade so that was the big meeting.  In 7th grade we again met with the new teaching team, social worker and assistant principal to review and revise.  This year we had set up an informal meeting w/the 8th grade team because of some lengthy off campus trips and we reviewed the 504.  I have to say that we know how fortunate we are to be in the school district that we are in.  We have had a few bumps, but that was isolated to 2 teachers and quickly resolved.

True, but as you said, there were no 504s back then to rely on either. The problem is that everything is too political these days and there's red tape wrapped around everything. Our school system insists that a school nurse be present (if not administering) all injections and most of his checks. They have to record everything for themselves as much as I have to record it for our doctor. If a child is ready and able to handle it themselves that's great, and a lot of times the teachers WON'T have a problem. But taking precautions never hurts. My son's teacher this year specifically told me she wouldn't have a problem with anything he needed, and was even present for his 504 meeting, but then 2 weeks into school didn't understand why it was always her class that he needed to use the restroom in (b/c that was when his blood sugars were peaking)...and started telling him no he couldn't go. It got bad enough that several times he barely made it in time afterwards. Once we pointed out to her that, according to his 504, she had to allow him at any time, with no repercussions, he quit having any problems. It would have been absolutely horrible for a new junior-high student to wet himself the first month of school...the other students would have never understood.

@Mrs. Smith:  EXACTLY.  The 504 needs to be in place even in the best of situations.  We consider it a contract that defines responsibilities of my daughter, my husband and I, and the school.  In the revision we also define the times that she will test in addition to "at any other time necessary".  The 504 meeting also gives us an opportunity to make "face to face" contact and educate the teaching staff.  My daughter follows up with each of her teachers, as well.  I'm all about using the tools and resources available.  Even in the best situations things can go very wrong and misunderstandings/poor communication occur.  

The red tape has definitely increased in the last 20 years.  The good thing about school is that each teacher is still in charge of his/her classroom and most will allow a diabetic to do whatever is needed, as long as it's not disruptive.

Mrs. Smith, I'm concerned about you son's issue.  What time of day is the spike happening?  Has your doctor recommended any changes to prevent it?  Also, can your son use the restroom before class so it's not disruptive?  When I was a teenager my A1c was 14 or higher, so my blood sugars were really high.  I usually didn't have to leave class to go to the bathroom, but just went between classes.  

P.S. I'm sure your son would die of embarassment if he knew his mom and some middle aged stranger in Tulsa, OK were having this exchange right now... =)  

Oh, he's never been that high. His doctor freaked out when he jumped from 6 to an 8 in a 3 month period (even though he had a month long viral pneumonia where his b/s were jumping up to 450 at times). I'm beginning to think my son is an unusual case (which I guess can be said of all diabetics). His peaks are hitting around 9:30, which I don't think are that bad considering his numbers at lunch are generally pretty good, if not a little low sometimes. Changing his numbers to prevent that, which we did on a trial run, caused him to go really low before lunch-time...which wasn't good when it made him sick right before PE.

He does constantly keep a water bottle on him, which I'm sure doesn't help, but considering he now gets sick when he gets the least bit hot (which he didn't just a year ago) then a water bottle is his best defense. His school, although a great school, is ODD in how they handle the between class times. They only allow you time to go to your locker or bathroom after certain classes (5 min), and removed any extra time in-between for the other times (2 min). Just weird to me. He does try and go before class, when he can, but sometimes the urge doesn't really hit until mid-to-late class.

The school's bathroom policy is silly. Your son shouldn't feel bad about needing to leave class to go.

Your son's high is actually pretty common.  Many teens/adults with diabetes develop dawn phenomenon, which causes insulin resistance, from around 3am - 10am.   Then there is a noticeable drop in blood sugar around 11am.  The way you're treating is good.  It's better to be a little higher than to have a low before lunch.  Some people with diabetes eat lower carb in the morning to prevent it, but my guess is that won't work with a teenage boy.

Pumps are great in dealing with dawn phenomenon because you can fine tune them to exactly the insulin needed.  With a pump I have a base rate of insulin from 3am - 9am  that is more than twice the dose I need for the rest of the day.  If I eat breakfast I also add a couple extra units to my meal dose to overcome the insulin resistance.  

My son is only 6 but I just love getting to raise a boy.  I always joke that I wish I could have raised a son before I ever dated or married... it's definitely helped me understand the male brain better.  You sound like such a good mom and I'm glad your son is doing well.  Hope school goes well for him this year.  


So am I being stupid or innocent or what by not having a 504 in place?  So far it is all going well.  But this is our first year in school with T1diabetes.  

I don't think you're really being either, just very trusting. Our son was diagnosed last October (5 days before Halloween) and his school told us the exact same thing "there's no need." I'm sure you probably have a great relationship with your daughter's school and don't want to do anything to upset that, but one of the people we had to meet with before our son was released from the hospital was a medical social worker—which I have to be honest now, I thought was there to tell us we had done something terribly wrong to cause this, we WERE brand new to this after all—but one thing she made a point of mentioning was the 504. She said that most schools were going to do everything they could to keep from doing one because it's a lot of paperwork they don't want to have to deal with.

We went into our son's school that next week fully prepared for anything, and were sadly made aware of the fact that she was right. She had coined what the school would say word for word. Our school told us the same thing, and being new and confused we went back to the social worker to ask her opinion. She told us to FIGHT for the 504, even if we had to go above the school's heads because it wasn't about trusting the school, it was about guaranteeing that no matter the circumstances, our son and his special needs would be covered, no questions asked. It also puts, in writing, that if he is out of school for an abnormal amount of days (more than what is allowed) due to diabetes-related issues that they could not hold him back or hold it against him and that they had to allow him a reasonable amount of time for make-up work. They also had to have a full-time nurse on-staff (which they didn't prior to him) to accommodate his special needs and be available for any field trip that his father and I weren't attending.

I can fully understand your reluctance to want to force the issue, and I have been in your very same shoes. My son had been in this school for the past 3 years, and aside from the new principal, every one of them knew him on sight. I really didn't want to make them look at him any differently, nor did we want to be seen as the "problem parents" with the new principal. But, by the time our fight was over, we really didn't care. His well-being was more important than any opinions anyone may form.

This year he started middle-school and his 504 went much easier. It was a little bumpy at first (mostly due to a misunderstanding on what TYPE of 504 he needed—educational or medical—but after that everything came together easily, his nurse was aware before the first day of school and although the official meeting didn't happen until the first week of school, all of his paperwork was done and in the hands of every one of his teachers by the time the first bell rang.


504 plans shouldn't be necessary unless you run into some type of problem.  Schools are wary of liability and so many schools don't have nurses on site anymore.  

If there is something your child needs to do, like keep glucose tablets in her desk or testing glucose or taking insulin at certain times of day, and the school isn't making reasonable accomodation, then a 504 plan can ensure the school will work with you.  

I was diagnosed with diabetes before kindergarten and am 39 now.  Got a BA back in the day and I'm currently back in school to earn a nursing degree.  I've never had a teacher not accomodate whatever I needed.  Just be cool and ask and there should be no problem.  If a teacher is being unreasonable, then the 504 will help.


Our school only keeps the 504 for 1 year so I make sure I renew it every year.  And if you have problems you can ask for a meeting any time to  discuss any issues you might be having.

We make a new 504 for our daughter every year. We have never had a single issue with her school.  She is now in her 5th year at the school. They are all awesome, but the 504 is our insurance and assurance that she will be taken care of, and is there to insure they make those needed considerations for her.

That is good your school is awesome I wish ours was.  I had to contact our JDRF office to get some advice to help our situation.  Our 504 has always been pretty basic I didn't really know what to ask for or what was too much.  And the lady at JDRF told me everything I was talking about was reasonable and the school should be willing to agree to it.