Ugh The School Just Ticked Me Off!

[Nikki'smom]

this morning I dropped Nikki off and asked her if she brought her lunch and turns out she forgot it. so I went back home to get it. While dropping it off I decided to stop by the nurse and double check if she found the dietician that works with the school yet. She said the head of food services hasn't gotten back to her but she would fallow up with it.

Well she just called me back and said they have no clue who the dietican is so all they could offer is me going through the menu and decided what is ok. To me that sounds like a cop out and lazy! Now Nikki will usually bring her lunch but what is she forgets it and I am to far away to bring her her lunch is she suposed to starve all day because that food lasy is too lazy to find out who the dieticain is for the district?!?!?!

There has to be another child in my district that has celiac there just has to be! I know I talked to another mom on my sons soccer team and she said her neighbors 5 yr old was Celiac so I told the nurse to contact the kindergarten school in town and see.

What also ticked me off was the nurse said they told a mom of a child with a peanut allergy they can't help him either so bring lunch. Ol that is fine and acctually the best bet BUT what if they forget and us moms can't get there intime for their lunch period?!?!

Needless to say I pushed the nurse to do some research! I will give her a few days more and then I will start calling the head of the district to find out the info!!!!!!!! I just don't want to start calling the high ups and step on any toes because these people are taking care of my child.

UGH they sure talked a good game when the school yr 1st started!

[vanillazeis]

sorry. that really sucks. it sounds like you're doing everything right. Do you have a safe snack box in her classroom? maybe that would help hold her over just in case she forgets her lunch! good luck!

[dandelionmom]

How frustrating! Until you get this worked out, maybe find a back up person who could bring in a safe lunch if you can't get there in time?

I like the idea of extra food in the safe snack box too.

Lunch at school is yet another thing I'm worried about!

[Phyllis28]

Don't worry about stepping on toes. You are your child's advocate. My son has Aspergers and Tourettes and was in special education from the second grade on. He graduated from high school in June. I had to step on a few toes along the way to get him the services he needed.

[blueeyedmanda]

That is so frustrating. I hope you can work things out. I like the idea about finding someone who can get her lunch in the case you are not able to make it to lunch that day.

[Nikki'smom]

She does have a safe snack for class. I wouldn't call it a snack it is more treats ok junk food incase some one brings in a treat for the class that she can't have. Maybe I should send a granola ( gluten-free) bar to school with her.

I talked to her teacher just now when I picked her up and she said she would talk to the nurse and the lunch person because she agrees there has to be some kind of safe lunch the school can make for her in the event she forgets her lunch. She also agrees there has to be a dietican that works with the schoo it is just a matter offinding them!

I wish I had some one that could bring her a lunch incase I was unable too but unfortunatly we are the only ones in our family in this whole start! To be honest I am not sure any of her friends parents would understand how strict you would ahve to be with her lunch to trust them.

I am sure this is the 1st of many battles with the schoo over Nikki but youa re right I am my childs advocate so I will step on toes if I have to!

[Darn210]

How about leaving an emergency lunch at the school with her teacher . . .

I am thinking along the lines of something that has a long shelf-life (I am also assumming that she has no other allergies) . . .

You can buy Jif in little individual serving containers now ( Open Original Shared Link ).

An individual apple sauce

A lunch box size of chips

And gluten free crackers also in the individual size (something like these: Open Original Shared Link ).

And a juice box or milk from the cafeteria

Some of those items might have freshness dates and thus need to be changed every so often (hopefully not too often or that kind of defeats the purpose)

[Nikki'smom]

thanks! I was thinking about elaving something with her teacher but everything I came up with had such a short shelf life. I had no clue Jiff made little pb things like that! What a great idea!

Maybe those and some rice cakes since she loves rice cakes

[melmak5]

You can also leave an extra snack with the nurse, just in case.

Make sure you label them VERY well.

I would really question trusting the cafeteria staff with preparing a "safe" meal for your kid. Call me skeptical, call me under the weather and cynical, but if they are admitting they don't know how to deal with a peanut allergy or a gluten intolerance I would take it as a giant hint that they are either

1. afraid

2. uninformed

3. don't want to get their asses sued

4. all of the above

Maybe you can make and freeze a few meals, clearly labeled and see if they can store them in the school's freezer for emergencies.

[Juliebove]

Last year my daughter went without lunch several times. She brought her lunch in, but it was hot food I'd put in a microwavable container. Turns out they couldn't get the container open. Twice, I was able to open it at home by myself. But the third time, nobody could open it. Not even with tools. I threw the whole container away with the food still in it, along with all the others like it. Good idea, but bad design. I think the steam was building up inside of the container after it had been heated and caused like a vapor lock or something.

After that I sent in a can of Organ pasta. Now that I think about it, I never got it back. I used to mail order them but now I can get them at a local store here. There was a microwave in her room last year but students were not allowed to use it. I told her if she had to eat it, she would just have to eat it out of the can. I figured it would be better than no lunch at all.

[Renth]

That is really annoying, I had a similar inciddent in undergrad in college when I was first diagnosed I was on the meal plan and they sent me to a diatician who had no clue what celiac was and she then told me I could go through the menu and decide what sounded good and they would see if it had gluten in it or not, well after talking to my GI about it he and I decided that one that was a huge pain in the rear, two what if they ran out of the safe food by the time I got there and three cross contamination in a kitchen like that is too risky and that is what I would worry about most with your little one, school lunchrooms are mad houses when food is being prepared for so many in such a short time, that there is bound to be cross contamination, so were I you I wouldn't worry about the lunchroom at all and go the route of what the others have suggested and stock the classroom with a long shelf life alternative in case she forgets her lunch, Good luck with the rest of the school and good wishes for staying gluten free for your kiddo!

[crittermom]

How about a box of glutino cereal bars in the classroom? They have long shelf lifes and I believe are pretty filling. Maybe that with some applesauce containers? I know that alot of the chip brands are making those sealed snack size containers now as previously suggested. These might get her by in an emergency? Good Luck!

[gfgypsyqueen]

Hi, I have a peanut/tree nut allergic child in elementary school and I have already had this battle....key is to be factual and not to get mad in front of them. Very hard but it works in your favor. Bring any paperwork that would be informative and leave copies.

Step 1. Research the 504 plan. You can have your child declared a 504. The short version is this is a legally binding agreement spelling out how your childs health concerns will be addressed by the school. Classroom, lunch room, field trips, etc. Typically the 504 is used for a handicapped child, but it does apply to Celiacs and it does apply to food allergies. There is debate if this is an confrontational role to take withthe school, or if this is just outlining responsibilities and putting all the info on the table at the beginning of the school year. The info about the 504 is a good threat for Principals and District Head of Nursing.

Step 2. You have spoken to the nurse enough. Talk directly to the head Principal. Explain what your child has and what you need from the school and exactly what problems you are having. Do you need access to a microwave? Is your child old enough to use it own their own? This gives the Principal the heads up that a parent is upset and gives a chance for them to fix it.

Step 3. Call the main line for the school district and ask for the head of nursing. You want the person who is in charge of all of the nurses and clinic aids for all of the schools in the district. (For me, this lady is an idiot!) The District head of nursing is the person who will have the policy information about how food allergies and intolerances are handled. My school district claims to be able to serve Celiacs. I find that thought terrifying since I have seen the school lunch area (contamination hell).

Step 4. Work closely with the teacher. The teacher is your childs only advocate while at school. Educate the teacher about Celiac. Provide a safe snack box. Include something that would work if lunch is forgotten.

Step 5. I give my kids teachers an emergency sheet that I write up. I have concerns about substitute teachers not being made aware of an anaphylactic allergy in the class and making a deadly mistake. It includes the childs picture and allergy info (celiac and allergy info for the younger one), signs of reaction, steps in case of allergic reaction (Epi-pen/TwinJect & 911), contact phone numbers, etc. On the back I include safe snack ideas, label reading info. So far the teachers have loved this. It lets them buy snacks at the grocery store, or at least have a better idea how far reaching the food allergies and celiacs are. I always include a few "Always safe ideas" Like water and soda for drinks and fresh, whole, uncut fruit. She like these fruits....

Keep after the school and work your way through the school system. It took a while for me, but this year things are looking better.

Good luck!

[kbtoyssni]

Organ pasta is a good idea. They're like Spaghetti-O's and have a ring-style top so you don't need a can opener. A can of tuna would be a good protein source. Or try Thai Kitchen "ramen" noodles. They make a yummy lunch.

[Nikki'smom]

thanks for all the info! you guys are great!

Part of me has thought about the 504 plan but I want to give the school a chance. It is a brand new school so they are just learning how things work so I am giving them some leway. The nurse seems like she gets it and wants to understand but I am not sure if she talks a good game or really understands. Only time will tell on that one.

Her teacher is great I will say that she let her stand up in class on National Celiac Awarness day and tell the class about Celiac. I was so proud of her! Of course I am sure she miljked it a bit! LOL

I totally agree the lunch staf and lunch room are very cc! I guess part of my issue is now that Celiac has been brought into my life I want to get the word out and have other people aware of it so i guess I feel it is my job to educate these peopkle on how to deal with kids with this. When she started this yr out I brought a huge list of ok snacks and food (probably about 15 pages wirth! ) I also gave them links to several website about it and print outs about it. I doubt any one really read them

I really think bringing a back up lunch to school is a good idea. I ahve no clue if there is a microwave she could use if the meal was frozen. We are still learning all about the different foods that are gluten-free that she might like. I have to try those pasta things she used to love spegatteO's!

[lenjac]

My advice as a school administrator is get the 504 plan, if she has any other learning difficulties then I would insist strongly on an IEP for OHI (other health impaired). Also, present your district's food service director with a physician statement and that will "make" the cafe. have foods on hand for your child. The only problem that I see you running into is if she is not going to use the cafe. services frequently, the local staff may not keep foods readily avail. Our school manages our students with food allergies very well. Tho, no one has c/d that we are aware of, but me. And my cooks are always asking/inquiring what I can/cannot eat. They are very proud when they have a day that I can actually eat from the regular foods!!smile!!

Jackie

[Nikki'smom]

thanks Jackie! I would love her to ba able to eat there a few times a week I just can't see them getting their act together though. I hope they do because it anoys me that they are in the food industry and can make accomidations even small ones for any kids with allergies.

Nikki doesn't ahve any other issues excpet celiac and a 7 yr olds attitude where of course she is always right! LOL

If they don't get there act together i might look into the 504 plan I just don't want to make enimies in the school you know?

[Nikki'smom]

UGH again I just talked again to the nurse today and she pretty much said the best they could do is hand me the lunch calander and me tell them what she can have. It just floors me that they can't find a dieticain that works with the schools and that they have no clue how to handle this. I even told them that. I causually mentioned the 405 or is it the 504 plan? OOPS I hope I said it right when I talked to her!. I was nice about it saying I don't want to have ti look into getting it but I feel now that I ahve a child with specails dietery issues i feel I need to step up for all moms with kids with dietary issues in the district that frankly seems to me don't have the balls to step up and do something about it! UGH!

The Nurse gave me the number of the head of food services for the district and I need to call them and the head of food in my DD's school said she is going to start saving labels so I can read them and tell her what my dd can have. I guess that is a start.

[gfpaperdoll]

I would say not to mess around with the nurse & her saving labels for you - that is their job.

get the 504 while you go to the higher ups - write letters & keep copies. If you make phone calls, make notes & keep a log...

good for you for doing this - sounds like that nurse is clueless & thinks that you are just going to accept her useless plans...

[Nikki'smom]

I sent a letter right before school started and handed it to her teacher and the nurse. The nurse openly admits she has never delt with this before. It just floors me that no one in this district has this disease?!?!?

I need to do some research and make some calls and now it is time to go to the higher ups and take things in my own hand. What I don't get is why the child with the peanut allergy's parents aren't fighting for them about this issue! From what the nurse told me they just bring the lunch and that is that. Which for the most part Nikki will do. I want this for the far off chance she for gets it. T Or even that once in awhile treat that she wants to buy lunch.

Her teacher is great and did say I could keep of course a treat in her class but also a back up lunch. Maybe I should just be happy with that. maybe I am making a mountain out of a mole hill.

[gfpaperdoll]

It sounds like that school is skating on thin ice. Some schools even ban children from bringing peanut butter & jelly sandwiches or any peanut items. Some schools at least have a peanut free zone in the lunch room...

Sounds like that school is a tragedy waiting to happen. What area of the country are you in?

I had no idea that there were schools left that were that ignorant & with no policies in place to deal with allergies...

[Yellow Rose]

Step 1. Research the 504 plan. You can have your child declared a 504. The short version is this is a legally binding agreement spelling out how your childs health concerns will be addressed by the school. Classroom, lunch room, field trips, etc. Typically the 504 is used for a handicapped child, but it does apply to Celiacs and it does apply to food allergies. There is debate if this is an confrontational role to take withthe school, or if this is just outlining responsibilities and putting all the info on the table at the beginning of the school year. The info about the 504 is a good threat for Principals and District Head of Nursing.

In 504 it is defined as Other Health Impaired. You will need your Dr. to write a note saying your child has Celiac. You will need to put in your request for a 504 meeting to address this issue in writing. The school has 30 days to call a meeting after it is given to them in writing. It will also take care of the sick days that occur due to glutening. You will need to send a note with the child every time stating that they were out due to (state the problem that happened) and also state this is due to the Celiac. It will cover absences and you won't have to have a Dr. note each time. Be sure to state in the meeting what kind of reactions your child has and how long it usually lasts. That way they can go back if needed and confirm the absences are due to Other Health Impaired as defined in the 504 plan. Keep a copy of your notes that you send as they sometimes get lost by office people or you are asked to produce a note that they got several months down the line. One other thing is to get your child's teacher's e-mail address and let them know if the child is out for the day or days first thing in the morning. Most staff check their e-mail before school starts and if they have a note from you at the beginning of the day then you often will have a reply by the middle of the morning. Often they will send assignments so the child can work from home. You can request a set of books for home under 504 that way you don't have to wait for books and assignments to come home with a friend or have to go pick up at the school.

Yellow Rose

[Nikki'smom]

thanks again for the supoort and the repies!

Paperdoll, I live an hour out side of chicago in McHenry County IL. that is what kills me they have no clue and I can't believe I am the 1st parent to want to take a stand fr my child and any child that comes after with dietery needs. A friend of mine is a teacher in the next town over and she is going ask her school nurse how they handle this or if she knows anyone with celic in the school that we can learn from. I would be shocked if in 2 large towns that there are no kids with Celiac!

The other child I know in town who has Celiac goes to the kindergarten school in town so there is no lunch served. That same friend is going to put me in contact with that childs mom and maybe we together can put something in place to help our children in the school system.

I do know the kindergarten school has a child with severe peanut allergies because there is a brite yellow sign at the door way to the class room stating NO PEANUTS BEYOND THIS POINT. maybe they are more versed with allergies. Who knows?

Yellow Rose, Thanks you for all the info! I think I will start putting some stuff in place to maybe get this started and if I can make something happen with out it great if not I learned something

I am VERY lucky that Nikki is so good about school even when she has been glutened recently she refuses to miss school. Though she has gone to the nurse for a tummy ache this yr.

My DH thinks I am crazy to have this bother me so much. He just says make sure she doesn't forget her lunch . You would think since he had Ulcerative Colitis so bad he had to ahve his colon removed and he has gout where he can't eat certain things because they upset his tummy or aggravate his gout that he would think making sure Nikki is able to eat safe foods away from home would be priority for him. Instead he thinks i am going over board! UGH!

[Cheri A]

I understand the frustration that you are feeling and it seems like your school/district should have more policies in place to accomodate you.

My dd has multiple food allergies (see my siggy). There is only one lunch (hot dog day) that it is feasible for her to eat. And, even then, everything else has to be modified. While I suppose that I *could* make them accomodate her allergies, I would prefer to pack a lunch every day anyway. Have you looked at the menus? It's terribly unhealthy what they are feeding these kids.

It sounds like a lot of work to get a 504 in place *in case* she forgets her lunch to me.