Problems with school

[breannanoahmason]

Okay my son who is 12 has cf. He was diagnosed at birth so we have been dealing with it for a long time. Never really had any major problems with school that didn't require more then one call and it was fixed. IN the beginning of the year the teacher announced to the parents that kids could have bottles of water. But now at the end of the year as it is getting warmer my son has asked me to take a bottle of water. Well the first day she told him he couldn't have it cause the others didn't have any. He told her he could dehydrate easly, but i guess she didn't care. I called the school left a message for the principle. It was Friday so i never heard anything. Then the next week he takes a poweraide since on memorial day he got sick after only being outside for 30min. Again he was told no, she says she is not saying he can't drink it he just can't have it in class. SO yesterday i go to the special ed cordinator to see about getting a copy of his IEP to see if it is in there. I am not sure if it is as we have never had an issue with this. I can not seem to find my copy, I have the revised academic section but that is it. Well all he said was i will call over there and talk to them. I am going to request a meeting so that we can revisit it and see if it is in the IEP and if not add it. But i am also thinking of writing a letter to the newspaper. Anyone have any experience with this. I have never wrote a letter to the paper.

Jennifer mom for 3

 

[PatrickM]

Hi,

I have a son who is 15 and we have had our share of school issues. Middle school was the worst, for some reason they seemed so unreasonable and difficult. The high school he is at is so much more accommodating to kids who may need something "different" than everyone else.

A couple ideas I have are:
Request the IEP meeting. If you have an IEP, at least where I am in Massachusetts, you can request a meeting at any time and they have to agree to hold a meeting. You can also request a copy of the IEP at any time and legally they have to provide it. If it is in his IEP that he can have water then they are in non compliance with the Department of Education and you can tell them you are going to report them. He should be allowed a drink in class, personally I think any kid should be allowed a bottle of water.

Get a letter from your clinic/doctor stating he should be allowed to have water in class due to his health needs. They should have no problem writing this. I know you probably don't want to bother them with a seemingly small matter, but it is important to get this in his school paper work. Have the doctor date it from now until a year from now so you don't go through this again next year.

Personally I wouldn't write a letter to the paper but my son doesn't like any extra attention so he would not want this to be a public issue. I totally understand your anger though at wanting to publicize the schools behavior. You might write your letter to the Superintendent of the school. They don't like to be bothered with this sort of stuff and may just tell the principal let the kid have a bottle of water.

Good luck.

Tara

 

[breannanoahmason]

I spoke to the superindentant, didn't get me anywhere.

 

[Beccamom]

Do you have a social worker on your CF team? Our social worker wrote a letter for the CF doctor to sign explaining medical accomodations needed at school. The school forwarded the letter to their doctor they contract with for review. Then these were added to my daughter's 504 plan. The letter was worded to the school in a way that not making the accomodations were a very dangerous matter and they would be held responsible if the accomodations not be adhered to put the child in danger.

I also recommend E-mailin the school parties you are working with with the medical facts that are consequences of your son not having a water bottle. Put your request for an IEP meeting in writing, so that they must respond.

Jen

 

[Havoc]

I had issues with dosing my enzymes and the school nurse in high school. My doc wrote a scathing letter to the school board and I didn't have any issues after that. He also wrote on a prescription pad that I was to be allowed to dose my enzymes myself and that I was competent to change whatever it may say on the bottle based on what I ate.

Perhaps something like this could be of some help.

Personally, I'd bring the drink anyway and tell the teacher to bugger off. Then again, people who go on these little power trips really annoy me.

 

[mamaScarlett]

I ditto the prescription pad idea that Jonathan had. Also get your cf social worker on board-this is the exact thing that they are there for.
Do not write a letter to the newspaper...though as a mom I totally understand why you'd want to, but-When you're a kid with cf you feel different enough already. That may bring attention not only from other kids, but teachers as well, that he doesn't need or shouldn't have to deal with.

 

[Ratatosk]

DS has it in his 504 Plan and I never thought to ask about letting him have his own water bottle, they just told me they could have one at his desk. Have the doctor send a letter and get a meeting set up for a 504 plan and/or IEP

I also send a letter using Lisa Greene's site and attached several of the CFF documents and School Guide, so they could have info on CF. http://www.happyheartfamilies.com/TipsForCFParents.html

 

[Mommafirst]

My daughter is only in kindergarten, but we had problems earlier this year with her ability to bring salty snacks and have her own drink in the classroom. The teacher was big on teaching nutrition and didn't want her to be contradicting what he was saying (dumb...I wasn't sending her with cola...it was just water or gatorade). I was writing letters and having meetings all over the place but the thing that changed everything was one day when she fell asleep and couldn't be woken up. It was NOT a dehydration issue, it was just a very very tired kindergartener issue....but they because convinced that they had missed something and made her sick. I got my way after that.

 

[Simba15]

what state do you live in?
PUT IN WRITING that you are asking for a PPT meeting immediately. Bring a doctor's note that he must have access to water 24/7. If they do not comply tell them you will follow the process for a complaint outside of the district. You have the right to an educational advocate for your son, free of charge. this person will make sure everything happens that is supposed to. worst case scenario is you can file a complaint with a federal agency.

does he have an iep or a 504? important to know the difference as there are two different laws that cover each.

let me know.

 

[Tamngia]

Sorry to hear you are having trouble. I would start sending very aggressive emails to the teacher, cc in the principle and superintendant stating the emergency of the situation. and also to threaten that you will hire a lawyer for their negligence and creating an environmrnt that is toxic for your child. i wouldnt be laid back if they are treating you like that. I have had some arrogant and stupid teachers in the past. give them some of the basics about CF. You need to be bold and list that your child has a terminal illness. The Teachers actions are life Threatening to your son. Watch them move then. Good Luck
You can go to the news websites in your local area, they have an ivestigator page that the news may follow up on. You do need to be bold and use those key terms listed above to get results.

 

[TreasureGoddess]

Ask your CF team for contact info of your social worker. It's VERY important to stand up to the school and copy teachers, principals, superintendents, nurses, district nurse supervisor, etc on all correspondence. Don't accept less than you need to keep your child safe and healthy at school. I would look at getting a 504 plan set up as well as your IEP. The 504 plan has federal laws backing it that state that your child needs to have special treatment for his health and the school is responsible for making sure to comply.

Bring someone else with you to any meetings at the school as someone to take notes, be a second witness etc. It's easy as a parent to get so frustrated you can't think straight. Have your doctor write a prescription that your child needs water and/or gatorade.

One thing that helped in my kid's class when he was younger was to have a solid colored water bottle that he could have gatorade inside and the kids wouldn't know if he had water or not. Not much of a difference, but one grumpy teacher was ok with that one.

Good luck!!!

 

[Aboveallislove]

I am so sorry you have to deal with this and completely understand the desire to threaten, go public, etc. etc. But something from the Love & Logic (book, webpage, Lisa Greene's page), once hit me really powerful--that we are teaching our children how to handle issues, and that rather than be combative, approach openly. I KNOW that is hard b/c they are being unreasonable. And I DO NOT mean taking "no" for an answer. As others said, get the social worker to help and find out from here (or call CFF lawyer--see their page), what you need to do to IMMEDIATELY get added to your child's IEP (or 504)--not sure. That would require the doctor's support, etc. But a few thoughts in doing this:
1) As soon as you know what to do/who to talk to to get this added--and I would have it specified that your child has available AT HIS DESK water, gatorade, and other hydration for him to drink as he needs--b/c you don't want him pulled from class to go to nurses office or hall to drink--I would ask to meet with Principal and Teacher.
2) At the meeting, start with questions and information:
-I understand you have some concerns, I was hoping you could share them with me? And I had some additional information I thought you might find helpful.
The teacher will likely express the "unfairness" etc. Which will be a great time to empathize with her, while actually getting her to see how horribly she is acting, along the lines of: "I know. It is really hard for me to explain to Tommy the unfairness to him when he has to get up at 6 to do an hour of treatments and that he can't play after school because x,y,z, and why he has to stay in the hospital, etc. etc. so I can understand it must be very hard for his classmates to understand why Tommy gets to do something they don't. Maybe it would help if you explain to the class how cystic fibrosis works--I've already discussed with Tommy and he thought that would be a great idea. " Then you can explain why this is a life threatening issue and not an issue of being thirsty.

You could also ask something along the lines of: "Is there anything about Tommy specifically that makes you concerned?"

By going in with your information, doctor's note, etc., and asking questions and being "positive," I think both you and your child will end up in a much better spot, because he has to go to school and face this (and other teachers who talk). If you can find the Love & Logic discussion on this issue, I'd strongly recommend it.

Of course in the end, if the teacher says "no," you can always say, "well, I'm sorry you feel that way, but legally you must allow this and I will do what is necessary." And of course the principal will be there who knows what that means.

Hugs and best of luck.

 

[breannanoahmason]

Today was the last day of school. I emailed the special ed cordinator yesterday and he said i could pick up a copy of his IEP at the school. I went back a little bit ago to get a copy of his IEP, but they were already gone for the day. So i will be going in when i get back for vacation to get it and look it over. it isn't in there i will then request a new meeting. I have never had this much issues with a teacher. Most times i just call the principle and it gets taken care of. But i think part of the problem is the principle is leaving after this school year, so he doesn't give a crap. My son says he mouthed off to her. I have had nothing but problem with her. She actually had me come in for a conference in the beginning of the year when he was getting all B's. Mainly she wanted to talk to me about his bathroom usage and if it was normal. She has asked him to wait when he says he needs to go, made comments about it not being the potty parade. makes comments to me about how long he takes in the bathroom. I understand he needs to not be taking advantage of the bathroom privilage, but only he knows how bad he really needs to go. Just so frustrating, i wish i had to confidence to home school him and could provide him the help he needs with his school work. But know that he is getting into the higher grades in school some of the stuff just doesn't come easy to me so it would be hard for me to teach him .

Jennifer mom of 3

 

[Aboveallislove]

Jennifer,

I'm so sorry--it sounds like lots of problems with the teacher. Given the additional information, it seems it might stem much from her being frustrated (and feeling taken advantage of), and as you said, you son could be taking advantage and did backtalk. That doesn't mean he doesn't get to do what is needed to take care of himself or that the teacher is not being a complete jerk, but might explain the teacher's attitude. I wonder if it would also help to acknowledge some of her annoyances, while pointing out she is the ADULT and of course a child is going to have even greater reaction to something that isn't a mere annoyance--like CF--along the lines of:

I can imagine it is hard on you to have the class interrupted for bathroom breaks, and that Tommy (just using made up name), maybe doesn't always handle himself the best. It can be frustrating for me too, but then I remember he is 10 (or whatever) and that sometimes he responds to all of the medicines (elaborate so she gets a clue as to what CF means), in a way that is inappropriate. I mean afterall, we're adults and we sometimes respond inappropriately to our frustrations, such as by mocking a child in front of his peers by calling a needed bathroom trip a potty parade. So I will talk to Tommy about x,y,z, but I really need your help to make this a non-issue because it is so hard on children to be different and imagine the horror he would feel if he had an accident in class."

just trying to think through some ways to help you get through to her. also, if principal is on way out you might want to directly contact superintendent's office to include him on the meetings. hang in there.