When Teachers Don't Understand Celiac Kids

[looking4help]

Thank you so much for the idea of the M&M's! My daughter recently went gluten free this summer and I have been worried about the new year coming up. This answers it totally for me!

AWESOME advice!

I would tell the principal everything. Bringing a big cake in without telling you is bad enough, but not letting her have ice cream is beyond horrible. The school parties and events are so tough, there is always gluten everywhere. I was room mom in my celiac sons class this past year. Then I could make the parties gluten free as much as possible. Also next year make sure she has a box of treats on hand in the class - M&M's, Skittles, her favorites when the unexpected birthday pops up. Good luck, it will get easier!

[Skylark]

I was wheat-free and dairy-free as a child from "food allergies" starting before age 3. My heart goes out to your daughter because I walked in her shoes.

I can't tell you how many times Mom negotiated with teachers. She simply wouldn't take "no" for an answer. Parents used to have a lot of pull in the school systems; Mom used that to my advantage. She managed to get me allowed to have Kool-Aid at snack time in kindergarden instead of milk, special meals in the school cafeteria, bag lunches on field trips where food was provided. Once Mom talked to them, every teacher I ever had told us ahead of time if there were going to be birthday parties. Mom would send Rice Krispie treats with me that day. There were always a few to share, which was important. If a couple other kids wanted what I was eating instead of the cake, and I could share it, I felt a lot less isolated.

I'm sure there were times I didn't have food with other kids but to be honest I don't remember them. I remember that Tupperware container with the Rice Krispie treats. LOL! Even as a child, you learn to pay more attention to the non-food things at parties and events the same way celiac adults do. I didn't like stomachaches so I learned to cope.

I would say share everything with the principal. Mom always found good support from administrators when teachers did something stupid. That teacher had no clue.

[Grace'smom]

I was wheat-free and dairy-free as a child from "food allergies" starting before age 3. My heart goes out to your daughter because I walked in her shoes.

I can't tell you how many times Mom negotiated with teachers. She simply wouldn't take "no" for an answer. Parents used to have a lot of pull in the school systems; Mom used that to my advantage. She managed to get me allowed to have Kool-Aid at snack time in kindergarden instead of milk, special meals in the school cafeteria, bag lunches on field trips where food was provided. Once Mom talked to them, every teacher I ever had told us ahead of time if there were going to be birthday parties. Mom would send Rice Krispie treats with me that day. There were always a few to share, which was important. If a couple other kids wanted what I was eating instead of the cake, and I could share it, I felt a lot less isolated.

I'm sure there were times I didn't have food with other kids but to be honest I don't remember them. I remember that Tupperware container with the Rice Krispie treats. LOL! Even as a child, you learn to pay more attention to the non-food things at parties and events the same way celiac adults do. I didn't like stomachaches so I learned to cope.

I would say share everything with the principal. Mom always found good support from administrators when teachers did something stupid. That teacher had no clue.

Thank you. We had a wonderful meeting with the principal, who bent over backwards to help make next year's transition into first grade SO much better than I'd even hoped. I was able to request the teacher I wanted for her, scheduled a meeting with her before school starts, plan out a meeting with the guidance counselor, school nurse and even the town's director of food services from the cafeteria. And yes, my incoming kindergartener will have the OTHER k teacher, not the one that this happened with. So I felt I was able to regain control over a difficult situation, and that I had his attention, time and understanding. Feel so much better now. Thanks for all of the great posts. Emily

[bbuster]

Thank you. We had a wonderful meeting with the principal, who bent over backwards to help make next year's transition into first grade SO much better than I'd even hoped. I was able to request the teacher I wanted for her, scheduled a meeting with her before school starts, plan out a meeting with the guidance counselor, school nurse and even the town's director of food services from the cafeteria. And yes, my incoming kindergartener will have the OTHER k teacher, not the one that this happened with. So I felt I was able to regain control over a difficult situation, and that I had his attention, time and understanding. Feel so much better now. Thanks for all of the great posts. Emily

That's awesome for your daughter, and this will help build your confidence on dealing with future issues. Way to go!

[macocha]

I am really, really glad to hear that your meeting went well! that is fantabulous!

I have had nothing but help with my son's school when diagnosed! They did a 504 plan on their own (not many will do) that covers his withdrawal periods and any other where he may fall asleep in class (not to be abused) and if there is an activity in the classroom with substances he is not sure about and the teacher in insistent, he has permission to walk out of the classroom and straight to the office and not be considered insubordinate.

They have also allowed him to use the teacher's microwaves and storage area for snacks. He has to have a teacher there with him to warm up stuff though. can't just waltz into the teacher lounge

at his school they have salad prepped and it is first come first served, but they set his aside as that is really all he can have via the school lunch.

I had a meeting w/ the school VP and nurse and they were soooooooooooo receptive. With his daily vitamins, they offered for him to take them there as they get ready on their own in the mornings and that way he is on a good schedule for those.

they have been wonderful and he has two more years there (8th and 9th) and hope it continues!

not all schools are disasters or have ignorant teachers, so I am relieved to hear that your principal is very supportive of the situation.

Oh, I do stress that even though my son ALSO has a wheat allergy, celiac disease itself is not an allergy like peanut allergy, it is an actual disease that causes long term effects if untreated.

[mommyto3]

I agree. What she did was cruel.

100% Agree. I have three little ones and if a teacher pulled this kind of garbage with me I'd be at the principal's door with every detail. Really sounds like she should be a teacher at all!

[RachelisFacebook]

This absolutely blows my mind!! There are a multitude of people in my area with Celiac disease, most of which are school-aged, or recently graduated like myself. I believe that if any poo like this would have gone on in my district, there would be many other parents at the door to that principal's office, not just the ones affected. I feel rather blessed to live in a town with such a great support system. I wish the best of luck to you in your years to come. <3

[mommida]

I had problems for both of my students last year.

My daughter who also has Eosinophilic Esophagitus was on rotation diet last year to determine how many allergens to continue to avoid. Her teacher was AWESOME, not questioning any of the changes. Understanding how we had to determine what was OK in her diet and then a safe or not safe list that was changing through the year.

My daughter was losing weight and looking pretty rough. Falling asleep on the ride home and having daily headaches. She was going through further testing and I was terrified of any new diagnoses. The lunch aid sent her to the office for not eating her lunch. Really!!? The social stigma for going to the office for a second grader is "she was bad". (I heard from my kids and others that the lunch aid picked a unopened lunchable out of the garbage and gave a lecture about wasting food the day before.) I went in to school and explained I did not want any undue attention given to her diet or eating habits. I believe she should not be forced to eat, as I have seen it come right back up and continue a vommiting cycle that has required a hospital stay with and I.V. for up to 4 days. A teacher went to harp on me that they had nothing to feed her!!? So I calmly explained they never have the responsibility of finding something to feed her. Walked to her locker and pulled out over 15 snacks from her locker. Then the teacher told me to try and get "healthier" "more substantual" food to keep in her locker. Mind you this was snack choices avoiding all top 8 allergens, gluten, peas, and food dyes. $$$$$. $$$$$. Cha-Ching. Can anyone guess how much money was spent to supply 15 allergen free specialty foods in single packages?

Then my son was "punished" by not having a "treat" for missing a band concert. My son was playing baseball this spring as he has for the last few years. This year he was the starting pitcher for the team. The Band teacher/principal scheduled a last minute spring concert art show. (It was no where on the school calendar until 3 possibly 4 weeks before the event.) So I look at the baseball schedule the game is against the first place team. The band has 3 other kids listed as drums/percussion. I told my son to tell the teacher he won't be able to attend the concert (2 weeks notice because we also had a death in the family and the kids missed school so I'm not sure when the information on the concert was supposed to come home) Well the teacher had a fit. Announced to the ENTIRE band how (my son's name announced to the entire class) was letting them down by playing baseball instead of playing the concert. Said out loud what a STUPID decision. Then she had my son SIT OUT of band for 2 weeks before the concert. (He had to sit to the side and not play any music for an hour of band.) Mind you this is a private religious school and how would you feel if you were paying tuition money for this? So the game/concert night arrives. My son was rocking it out! First inning 2 runs came in, he had one struck out and then he caught a flyball (amazing catch) and made the throw for a double play. We got one run in. The next inning~he struck 'em out 1,2,3! Game was called for rain. We dash to the car soaking wet off to the concert. Got my son into the band uniform ready to play. Well the band leader/principal would not even look at him and therefore did not let him play. So we watched the band play waited for my daughter's part in the concert to be done and left. She was soo P.O.ed. Her speach to my husband about how she couldn't have the band preform without her first chair percussion, blah, blah, blah! Oh that's right she had him sit for 2 weeks he might not have put on the best show- so now she couldn't risk having him play. The kids in the band's reaction was more telling of the treament my son received over the 2 weeks prior. The comments they made about "can't believe you DARED to show up. We can use this dolly to roll out your dead body. You are going to get it"

Come Monday, I think all of this has to be over right? Noooo. She went and got the kids Taco Bell, gluten/ cross contaminated food for a treat. (I had been mentioned a few times that we can't eat Taco Bell.) Oh too bad (my son's name again announced out loud in front of everyone in the band because she was making it into an example of how you don't let her down. I got a phone call from him asking if he could just have a taco fighting back tears. He swears she knew he couldn't have Taco Bell and she did it on purpose.

She took a huge risk. What if he decided to eat it? What if he went into a Celiac crisis?

Well from these examples and many other things that happened this year, I have pulled my kids and enrolled them in Public Charter CYBER school. I am not risking my kids physical or mental well beings!

[bbuster]

I had problems for both of my students last year.

OMG - now we have gone from cruel (first post) to outright VICIOUS!

It breaks my heart to think that any child would have to go through this kind of crap - as if all of the physical, social and emotional issues of Celiac aren't bad enough!

I hope there is some silver lining here in terms of what doesn't kill you makes you stronger; but I would run, not walk away from that environment and make sure everyone knew why.

We have been so fortunate in that most of our school experiences have been positive, and at least the bad ones have been due to oversight instead of downright meanness.

Best of luck to you.

[catgriffith]

Hello there friends

I am so sad tonight. It has been an emotionally draining few weeks. My 6 year old, Grace, was diagnosed with Celiac disease a little over two weeks ago. It has been a rollercoaster for all of us, much like it was for all of you in the early days, I'm sure. The hardest part for me is the sadness I am witnessing each time we have attended the all too frequent end of the school year parties, coupled with graduation parties and family barbeques. Each time we go to one of these events, I see this sad look come over my little girl's face as she examines the buffet table, laden with foods, and especially, with those tempting desserts. And yes, I come prepared with her own baked goods and even candy. But it's the social component she is struggling with...seeing her friends eagerly reaching for treats on the table that just weeks ago, she too reached for with enthusiasm. And now she feels left out. We have spoken at great length with her kindergarten teacher about the importance of knowing ahead of time when there will be a birthday party at school.(There were 7 in the last 2 wks!) We've also had meetings with her to explain the physical and emotional side of celiac disease. And yet, two days ago, knowing what she did about my daughter's situation, the teacher wheeled in an enormous cake for the class - without telling us ahead of time - and served a piece to every child in the class, except for my little girl. Three of the children were allowed to have ice cream, as they had been absent for a previous ice cream party. When Grace raised her hand and explained she couldn't eat the cake, and asked if she could have a small bowl of ice cream instead, the teacher said no, that there wasn't any left. And so she sat there, watching everyone enjoy a special treat, feeling left out. Last night, my daughter cried herself to sleep over having this disease. My heart aches for her too. When she awoke today to the last day of school, she cried and said she didn't want to go, and asked if she could sit with me at the school's end of year Catholic mass. At the church, I approached the teacher and explained how difficult the past few wks have been on her, and that she needed to be sitting with her mom this morning. And the teacher said, and I quote, "I know. She was crying when she came into school. But she should sit with the class. We can't give into this." Despite my explaining to her that a parent isn't "giving in" as if this were a tantrum, but is trying to make a tough situation easier, I was turned down. Case closed. I am heartsick that a kindergarten teacher could be so indifferent to a little one's needs on the heels of a major life change. I have set up a meeting with the school principal to request a specific first grade teacher for my daughter for next year, and to ask that my incoming kindergartner will have a teacher other than this one. I can't decide how much information I should share with him over what has transpired this week. Has anyone else experienced this kind of situation in school? I am so sorry for such a long post, I needed to get this anguish out of my heart! Thank you, Emily

Emily, Let me just say, it could have been me writing that post. We are in exactly the same boat and I share the same deep anguish as you do. My daughter, Grace, (yes her name is Grace too!) was diagnosed almost 2 years ago at the age of 5 with Celiac. Her kindergarten experience was "ok" because I was room mom and was in there 3 days a week and planned every single party and food that was there, BUT this past year her 1st grade experience was much like yours. Even though I was room mom again, parties were planned without my knowledge (it does happen). There seemed to be a food party every other day, or an ice cream party, or pizza. And I had Grace's gluten-free treats there like you, and her "emergency party" baggie available, but it was still announced the "everyone can eat the waffle bowls except for Grace", or something with gluten was offered to her. All of this after we met with the teacher (more than once) with all of the information on celiac you could ever want.

My daughter developed major school anxities and we ended up having to take her to a professional counselor. She hated school and would cry every morning about going, and every night just thinking about going. She felt safe at home with Mommy knowing what was gluten or not, and she didn't feel safe at school. Nor did she feel accepted by her peers and even her teacher. I have been communicating with the principal about having a teacher this yr who will be compassionate about her dietary restrictions and I pray this yr. will be better, or I will have to homeschool her. The look on her face when everyone else is eating oreos, pizza, or birthday cake like you said is devastating. I am so sorry you and your Grace are going through it too. I cannot believe her teacher wouldn't let her sit with you though, that is so wrong on MANY levels. I pray your Grace will have an awesome year for 1st grade and have an understanding and loving teacher to comfort her. I would share it all with you principal. It sounds like you are good with words and not "tattling" but you are very calm and mature about the horrible situation. I think the way you worded it was great. You have to be your child's advocate and that principal should understand. YOU know what's best for your baby!

[catgriffith]

Thank you. We had a wonderful meeting with the principal, who bent over backwards to help make next year's transition into first grade SO much better than I'd even hoped. I was able to request the teacher I wanted for her, scheduled a meeting with her before school starts, plan out a meeting with the guidance counselor, school nurse and even the town's director of food services from the cafeteria. And yes, my incoming kindergartener will have the OTHER k teacher, not the one that this happened with. So I felt I was able to regain control over a difficult situation, and that I had his attention, time and understanding. Feel so much better now. Thanks for all of the great posts. Emily

Yay!!!!!!!! Awesome. Have a great year!