504 Plan With Schools

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My daughter is 6yrs old and on a gluten free diet. I have set up a 504 last year with the school and everything went well. This year is different. I had our dietition make up a menu that goes with the regular menue. Just like last year. The lunch room said that they couldn't find the food at the store so they couldn't buy them. So i went to the local store and found replacement that they could find. Talk to the dietition and explaned and she changed the menue for me. I thought all was going to be fine now. The only thing they could not get in town is the bread and pizza. I informed them that I would supply them for her. I took up the hotdog buns,dinner rolls, hamburger buns and on pizza day I fix it and sent it to school. Now instead of fixing what is on the menu they give her lunch meat all the time. So I've complaned and now they dont even give her her breads. She has to ask for them. I have tried every way to make it easy on them because there are only 2 gluten free children they have to fix for. But the more I make it easy on them the less they want to do. Can anyone help me in advising me on what to do. I know they can get the foods its just that they either dont want to fix them, they are not understaff, or it is just too much work to take time out to fix speghetti for 2. Under the 504 they are not suppose to change the perscription diet"menu"but they are. Are they in the right or am I just being picky when it comes to my child eating healthy. the board of education dosen't know the answer so they are contacting state for the rule on this. As far as everything else with crosscontamation they are doing great. They have there own pot to cook out of. Washing down the table before she eats. They are doing everything right except for her menue. How hard is it to buy chicken legs and bake 2 of them in the oven before everyone else meal. Her class is the first class to eat lunch. Can any one help me out because i knot want to back down from this. If i do what are they going to do when more gluten free diet arise later on. Need help fighting for my daughts rights!!!

[Mother of Jibril]

My daughter started preschool this fall and is going to a small private school (preschool through 12th grade) where there is no cafeteria! Everyone brings their own lunch. What if your daughter started taking her own lunch to school? Maybe she won't be able to have hot food (although it seems like a small sacrifice... actually much easier than cooking separate food... to have someone warm up her food in the microwave), but lunch doesn't have to be a big deal. If she's getting a good breakfast and dinner at home, what about giving her something simple for lunch: hard boiled eggs, pieces of vegetables and fruit, yogurt, corn chips and salsa, peanut butter on rice cakes, maybe some hot soup in a thermos... this is how my daughter eats every day.

It IS your daughter's right to be healthy and have an appropriate lunch. I'm just thinking you might both be further ahead using your energy to give her healthy bagged lunches instead of fighting the school system.

[DarkIvy]

I've never had to fight with a school system over this, but I know even at the college level this stuff can be a huge pain in the but. The cafeterias here only sort of provide gluten free options, and it's SUCH a joke. Luckily I was two months away from moving out of the dorms permanently when I found out that I couldn't eat it anymore, but the people I knew who did have to deal with the food services people all eventually gave up. We lived off the salad bar and *still* got sick.

The next year I lived in a sorority house, and I was told that the chef would be able to handle it. Dealing with the first one was alright, but yeesh. He was cranky and didn't like anyone to start off with, and in the beginning finding safe foods was difficult. He would tell me stuff was gluten free, and then I'd find out that it wasn't. I got plain chicken breast (and I hate chicken) nearly every night we had something I wasn't able to eat... which was just about every night. When he got fired and they found a new chef, things were basically the same. She'd forget to save labels so I could check them, and she made me my own soup once without potatoes, because she thought potatoes were gluten. I don't know how many times I had to tell her gluten = wheat, rye, barley, oats. One time she brought me a sandwich on gluten-free bread that she had baked... and she brought it out on the baking pan she'd baked everyone else's sandwiches in. Often times, she'd forget that I couldn't eat pasta, or bread, or whatever... and I'd have to wait around for another 30 minutes while she threw something together in the kitchen. By the time I got my food, my friends were all gone.

Yep, it was a nightmare. I was never ever healthy last year. I gave up and moved into my own apartment this year, and things are much better.

Moral of the story is that cafeteria staff are often busy and don't have time to worry about making small meals for ridiculously complicated diets. We celiacs ARE complicated. If you've ever felt confused about an ingredient or item, imagine how someone who has never done that much research on the topic feels about it. From our perspective it's easy: gimme this bread with that meat and please use separate utensils. To them it's basically confusion.

I second the suggestion to pack your daughter lunches for school. For one thing, you can control exactly what goes into it. You won't have to worry if she's getting the correct bread or any at all, or if she's being fed tons of lunch meat and that's it, or if there was any cross contamination. In a mass production kitchen, cross contamination can be a huge issue, even if you haven't had issues yet. And if the staff is so unwilling to help, it might just be less of a headache for you and for your daughter if you just send her to school with her own food. Loads of kids bring their own lunches to school anyway, so it shouldn't be too awkward for her, and she might feel more relieved knowing she won't have to try and get what she needs from the staff, who don't seem to get it. Eating a "normal" sandwich might feel less awkward for her than eating plain lunch meat while everyone else eats pizza, too.

You could get a copy of the lunch menu for the month, and if there's anything in particular she hates watching friends eat without her (ugh, I hate watching friends eat pizza when I can't eat it!) maybe you can make her a gluten-free version to take with her to school that day.

[kbtoyssni]

It sounds like with the amount of effort you go to to help the kitchen staff provide gluten-free meals, you might as well just make each meal yourself. If I had a kid, I do not think I'd trust the kitchen staff to provide safe meals. Yes, you can ask them to do in in the form of a 504, but I think the risk of CC is just too high.

There should be some legal repercussions of not sticking to a 504 plan - that's why people put them together. I'm not sure what they are, though, and for school lunches I don't think it's worth dealing with. If it were something you couldn't easily fix like other kids using playdoh and contaminating tables then I might go the legal route, but it sounds like this would be easiest to fix by you providing his lunch everyday.

[frec]

At our school the kitchen staff has been cut back and they are quite rushed and overworked. The food is dreadful--overprocessed and unnutritious stuff from a food service, not cooked on site--chicken nuggets, pizza, hot dogs, hamburgers, and burritos are the most frequent choices. It isn't good for any of the children. Your child deserves the district's care and consideration but bringing lunches from home sounds easier, safer, and healthier.

[kim:)]

My daughter is 6yrs old and on a gluten free diet. I have set up a 504 last year with the school and everything went well. This year is different. I had our dietition make up a menu that goes with the regular menue. Just like last year. The lunch room said that they couldn't find the food at the store so they couldn't buy them. So i went to the local store and found replacement that they could find. Talk to the dietition and explaned and she changed the menue for me. I thought all was going to be fine now. The only thing they could not get in town is the bread and pizza. I informed them that I would supply them for her. I took up the hotdog buns,dinner rolls, hamburger buns and on pizza day I fix it and sent it to school. Now instead of fixing what is on the menu they give her lunch meat all the time. So I've complaned and now they dont even give her her breads. She has to ask for them. I have tried every way to make it easy on them because there are only 2 gluten free children they have to fix for. But the more I make it easy on them the less they want to do. Can anyone help me in advising me on what to do. I know they can get the foods its just that they either dont want to fix them, they are not understaff, or it is just too much work to take time out to fix speghetti for 2. Under the 504 they are not suppose to change the perscription diet"menu"but they are. Are they in the right or am I just being picky when it comes to my child eating healthy. the board of education dosen't know the answer so they are contacting state for the rule on this. As far as everything else with crosscontamation they are doing great. They have there own pot to cook out of. Washing down the table before she eats. They are doing everything right except for her menue. How hard is it to buy chicken legs and bake 2 of them in the oven before everyone else meal. Her class is the first class to eat lunch. Can any one help me out because i knot want to back down from this. If i do what are they going to do when more gluten free diet arise later on. Need help fighting for my daughts rights!!!

Hi, I too am on a 504 plan and the school system here doesnt supply any food I can really eat, unless you count cheese. Haha, so I just take my lunch everyday because nothing was happening. My mom even is a teacher and she couldnt even convince them. So I take my lunch everyday and everything is fine. My 504 pretty much says that Im on the diet, what I can eat, and pretty much if I get sick I need to be excused to the bathroom. But I am also in highschool, and for an elementry age student things could very well be different. Expessialy with different school systems. So I would say if all and all fails, go with packed lunches. But I personaly had to talk to my counsler who didnt ever know what gluten was, and I gave her information handouts, in which she sent to my teachers, ect. So yeah. Good luck though! I know how hard it is as a student. Oh also another tip for the future. I remember back in elementry school/middle school so much birthday food was brought to class/ fiesta's in spanish. You might ask for a notice when food (for any kind of party) will be given out during class, and make sure your daughter too has something special she can eat. I remember how hard it was to watch other kids eat brownies, cookies, and cupcakes knowing I cant have them. So I brought in cookies that I could eat, or what ever on the special days, and then I my teacher would keep a little snack jar, just incase I didnt have something special for someones birthday. It may seem silly but let me tell you back then it ment a lot!

I wish the best of luck, because being on the gluten-free diet and being in school isnt the greatest!

[silly-ack]

So, you are definitely in the right about what you're doing, and the school should definitely be more accomidating (especially since she's a little kid!). If I were you I would continue fighting for her to be treated right with school lunches, but in the meantime make lunches for her to take to school. And I hope the lunch meat is ok- deli meat sometimes has wheat fillers, but I'm sure you've checked all of that.

It's frustrating to have something so important be completely out of your hands, especially since you're given so much and they've given so little, but someday your daughter will appreciate all the effort you've made for her benefit.

GOOD LUCK! Keep us posted with what the district ends up doing!

[heavy]

So, you are definitely in the right about what you're doing, and the school should definitely be more accomidating (especially since she's a little kid!). If I were you I would continue fighting for her to be treated right with school lunches, but in the meantime make lunches for her to take to school. And I hope the lunch meat is ok- deli meat sometimes has wheat fillers, but I'm sure you've checked all of that.

It's frustrating to have something so important be completely out of your hands, especially since you're given so much and they've given so little, but someday your daughter will appreciate all the effort you've made for her benefit.

GOOD LUCK! Keep us posted with what the district ends up doing!

Since I've posted this message on here i have got alot of responces. All of them have made good points to thier story. However not fighting for my children rights and giving up and packing a lunch is not an option for me. I have 4 children rangeing from 12 -4. All of them are in school except my 4yrs old. She will be starting head start this year. They are all on a gluten free diet and my 4 yrs old is allergic to milk, egg and whey. If I don't stand up for their rights then who will! I do admitt this has been a long hard battle but my children desever it. However it is not just for my children that I am doing this for. Gluten free diet is becoming more and more out there in out schools. I have gotton some good advice from my childs advacate. I have been keeping a diary of what my children eat at school along with all the phone conversation i have had with the staff at school. I have also found out that my 504 plan was never written up unil about a week ago. My css case worker is helping my find information that might be helpful in presenting my case. I have also been email local stores and they are findly getting ener-g breads so the school can purchase them. I have also found out that I can request that the lunch room staff have 2 meeting a year on learning how to read labels for gluten, hidden source of gluten and how to avoid crosscontamination. You have to make this request in your 504 plan. As far as the 504 plan you have to be specific about what you want.

Like having the cafeteria staff calling to conferm every food that they recieve to make sure it is gluten free and not made on a wheat line.

having pots,pans and utincels that are used only for gluten free children and stored seperiatly to avoid cc. Have the cafeteria staff wash their hands and change their gloves before preparing gluten-free meals. having the cafeteria staff cover the tray with seran wrap to avoid cc.

These are just some of the thing that I will be putting in my 504 plan. The main one is verifying with the company that the food is gluten free and not made on a wheat line. The school was feeding my daughter cocoa puff because the label didn't show any gluten. And they were correct it didn't. No malt wheat or anything. However the cocoa puffs in the store are not gluten free. So I called the company. The bowls of cocoa puffs are gluten free but they are made in the same factory as the others so they are contaminated. She had been eating them for 2 months before I found out. No wonder why she was hurting so bad.

This isn't just a mother fighting for my kids I am doing this for all the allergies kids. The school is peanut and tree nut friendly. So this make things a little harder for every one. Right now I'm calling all the manufactures to find out if the foods the school has is gluten free. Even thou this is not my job I don't mind helping the schools because this is not easy to deal with. I do not expect them to do all the work but if this was thier children with gluten free diet they would be doing the same. This needs to be a two way street. Help on all 4 courners. Maybe in the future I will be some help to other children or parents with this problem.

Keep the advise come good or bad I can use all the help i can get. I will try to keep you informed with the out come.

[skyyblues]

I say good for you! Someone has to stand up for those who come behind. I am sure this will not be an easy task for you but it is a good one!! My boys are grown but I have 3 grandsons, who still have to be tested. I shudder at the thought that they would not be safe at school. I understand feeding us is more difficult but with the proper planning and training it can be done.

Keep in mind that any change that comes of this is a big step forward. Plus think of the number of people that will now be aware of Celiac Disease and the dangers of hidden gluten. You are also teaching your children a valuable lesson along the way. I understand it would be easier to just send their lunches with them but that is not the way it should be. Someone has to stand up, usually against the current, when something is not right and say so...

I commend you in your efforts. ...my grandsons say "Thank You"

Please, keep us advised.