Advice On Handling A Elementary School Situation

[mzarin]

Hello everyone- I am hoping you all can give me some good feedback. I feel very alone in my school with regards to my son's celiac. I have a 81/2 year old in 3rd grade. He was diagnosed in the summer he turned 6 so this is his third year in school with celiac. This week I had an experience that I am still exptremey angry about and not sure what to do about. Our school offers three PTO sponsored lunches. This is a fundraiser so the the lunches are a choice. My son does not participate as the choices are Pizza, Chicekn fingers, and bagles. Fine, i can live with this. My non-gluten-free daughter participates. However, recently they changed Chicken Fingers to a subway sandwich. I know from my own experience with Subway, that they could make a w/o bread and put in a salad container. I asked my son if is was possible, would he be interested. He said yes b/s then I could send a roll and he could eat li everyone else.

I call the coodinator, who pointed had me call the peron overseaing it (who is also a friend). She said let me call Subway and check. She did and they were absolutely willing to do it. I thougt great. My son was thrilled. As I am sure you all know and experince, he cannon participate in almost all school related events. About a week or so later I get a call from the person who is in charge of fundraising who (btw another friend) tells me that this cannot be done (not b/c the place won't do it), but b/c they have been getting numerous request to make accomidations and if it sone for Sam then what about everyone else. I asked if these were people with allergies or health issues and she could not answer. She did not know. After going aroud around and around, the bottom line is that it is not being done b/f of the potential of what could happen ie parents who don't like cheese, or who keep kosher (I am jewish) or xyz call and say well you did it for one then why not my child. This person and I really hit a wall. In part b/c I beleive the issue has been clouded by her experince with other parents complainst. I realized that this was a losing batter, even after she gave in said just do it. I told her no because I was now being set up. In the end I told her I would not go any futher and that I just wanted to move on. Several people I spoken to have voiced how horrible they think it is the PTO would do this to him. I said to my friend that all they had to do was tell me there several health related request and it was too complicated, but they didn't. I pointed out that all of their choiced discriminate against Sam and that did not go over to well. I jut do not know what to do if anything. I feel like people just do not get it. even in his class this year, the sensitivity has been horrible. I could go above her, but I beleive all the people involved already voiced an opiion ad worst of all the two PTO presidents have children in my son's class. I am angry b/s they have taken the risk and given him an opporunity that he would not have otherwise.

Any thoughts or feedback would be amazing.

thanks

Melissa

[dandelionmom]

I'm sorry that this has happened. I wish I had some kind of advice for you. Right now, I'm not ready to trust other people to prepare my daughter's food so we've just been sending in really great treats on the days that she is getting left out of a treat at school but I'm sure that that won't seem so great as she gets a little older.

I hate that our kids get left out of so much.

[jerseyangel]

Hi Melissa and welcome

I'm sorry about what happened. Is there any way you could make him a sandwich on a gluten-free roll and either send it with him or bring it in yourself? That way he could sit and eat with everyone else. Surely they can't have a problem with this, as the gluten-free diet is a medical necessity.

Actually, in my opinion this would be safer because even meats and cheeses from Subway have a very high chance of being cross contaminated.

I hope you can get something worked out so your son doesn't have to disappointed.

[mzarin]

Hi Melissa and welcome

I'm sorry about what happened. Is there any way you could make him a sandwich on a gluten-free roll and either send it with him or bring it in yourself? That way he could sit and eat with everyone else. Surely they can't have a problem with this, as the gluten-free diet is a medical necessity.

Actually, in my opinion this would be safer because even meats and cheeses from Subway have a very high chance of being cross contaminated.

I hope you can get something worked out so your son doesn't have to disappointed.

Thanks for responding- Actually he brings his lunch all the time. He also has a box of treats in his classroom. Occastionally a parent reaches out to me to let me know they are sending in cake for a birthday. The issue here was they had a chance to enable him to actually paricipate. That was the whole issue for Sam. I think for this one day he would be to sit at the table and get a PTO lunch like everyone else. I think I as his mom have reached a frustration level with the lack of sensitivity I have been feeling lately.

Melissa

[Adelle]

Firstly, it sucks that your kid's school is being so exclusionary. I'm sorry about that.

Secondly, I worked at Subway (before diagnosis!). There is NO concern for allergies or food separation. We used the same gloves to bake bread, chop tomatoes, slice cheese. The separate salad they do consists of using the same gloves, tossing some lettuce and vegis in a container, and calling it good. Had he participated, he would have gotten sick. We were also told to tell customers we could accomodate special diets (vegan, allergies, etc) but just do what you'd normally do. I could have made people very sick had I worked there more than 2 weeks!

[dbmamaz]

The more time i spend with the public school system (15 yo dd, 11 yo specail needs - emotional) the more i understand why people homeschool! It so often feels like a factory where everyone has to fit in a compartment and there are no exceptions. My son had the typical specail ed experience where you have to totally fail out of school before they will give you any help - until then, it was just a lot of punishment - punishing him for his illness.

I know its kinda different, but its so frustrating, as a mom, thinking you can make sure your kid gets treated 'fairly' - but what seems fair to them (treating everyone identically) isnt fair to us.

I know its frustrating and ur mad, but these are the bumps we have to learn to handle. Keep in mind - he's probalby not as upset about it as you are!! Missing out on a PTO sandwhich is just not the end of the world!

[Cheri A]

Hi, I'm sorry that this is happening to you and your son too. ((hugs)) I hope that this is one of those times that it is bothering you more than your son. My dd has been gluten-free for two years and is also in the third grade. I hate how many things are food-related! She is never able to participate fully in anything either. But, I try to just bring in something close to what everyone else is having. Occasionally, it bothers her. Most of the time, its me that is sad about the whole thing.

FWIW, I have another suggestion for your PTO. Our school has nights at certain restaurants and families can go order what they want, the school gets a percentage. They have this opportunity monthly at either McDs, Wendy's, a local pizza place, or Coldstone Creamery. We don't participate usually. But once in a while, we will go to the pizza place and eat. I take her pizza and buy a salad and drink for her there. Maybe you could just go to Subway and get him what he wants and bring it to school. Or make him his favorite lunch and send a fabulous treat for him to have.

[mzarin]

I just wanted to thank everyone for their responses. I feel like I have a couple of friends who understand b/c they are very close to my family and love my son. Beyond that, I have felt very alone over the last few years. Admitedly, I never really reached out to a web group before. We do have a local celiac-kids group, but they do not meet that often and it is usully not about parents getting together to really talk and get feedback. You are really get what we go through. My son was initially upset, but like anything with this, he moves on. He really copes great for the most part. He was old enough when he was sick, to remember and also to learn how to read everything (which he does). But as his mom, it is frustrating to have so many people just not get it. Last year the class mom had a son who had peanut allergies in a different grade and was really sensitive. This year it has been downhill with every party having to have cakes and donuts and so forth. I am one of the class parents, but have given up. Everytime I bake for the class, someone shows up with donuts. Even my husband, who does not get bent out of shape about much, has gotten really mad about this. Now I am struggling with what I want to to next with regards to 4th grade and reaching out to the princple. He has an IEP as he lost his hearing in one ear, but I have never pushed the celiac and now maybe I have to. BTW I could relate strongly to the comment about a child having to fair before they are helped. My son needed OT as per his Kindergarten teachers request and b/c he was not diabled enough they would not help him. They only gave him OT when he lost his hearing and by Law they had to classify him to put the speakers in the classrooms.

[brendygirl]

Hello,

I see what you're saying. I work for a public school. It's unfortunate, but there are lots of complaining parents out there who are incredibly unreasonable, and so it ruins it for those with legitimate complaints.

Example: I had a parent come in crying, saying her son was being bullied. She demanded that we provide him with a personal security guard! I called in the kid, and it turned out he had eaten his friend's (the 'bully') Hot Cheetos, and agreed to bring Hot Cheetos today. He hadn't told mom that part. So , among other things, I told the mom that they need to stay away from each other to avoid further problems. After school that same day, I saw her and waved and then couldn't hide my shock when I saw her child and the bully laughing and playing together! She looked at me kinda embarrassed, since she had insisted they were not friends and his life was in danger.

Also, those functions that the PTO puts on are really a lot of work, and I can see how accommodating special requests could be too overwhelming. We have 1,000 students K-5.

I read that in Italy celiacs get tax deductions, free gluten-free food in the pharmacies, and it's mandated that all public functions (incl. school field trips) must offer a gluten-free food choice. Sounds good, huh?

The elderly ladies in my celiac support group try to remind me how "lucky" I am that there are so many foods available and that many stores and restaurants are aware and accommodating. Things have improved greatly, and hopefully we'll be like Italy someday soon!

[mommida]

Any school function that involves food, I am there. I do not like putting my children's health in the hands of anyone else. It is a private school and every person has been great about the gluten free diet. The teacher's have gluten free treats/ snacks on hand, are respectful of my children's replacement snack supplies and space, the janitor spoke with me to make sure cross-contamination would not be an issue- uses Lysol wipes for lunch table clean up, and parents bring in a gluten free replacement when their child brings in Birthday cupcakes.

Here's the ironic part.... I am the PTL vice-president. I make sure every child is able to enjoy all functions.

[mzarin]

I actualy decided to do a little research. We have a total of five elemntary schools and beside mine, I know that that at least two others have children with Celiac. I am going to try and peak to those parent and/or the school themselves and see how it is handled. After I get all my info I think will meet with our new principal and see if there is a way to make this better for im. I will let you all know what I find out.

[kbtoyssni]

Do you have a 504 plan for him? That might make some of these situations easier to deal with.