How Would You Handle A School Like This?

[Kimmik95]

This is probably rediculously long - sorry!

Some background. We live in a nice area and my son goes to a 'good' public school. In fact, in our area, it's probably the best regarded elementary school in one of the best school districts. My son was diagnosed with ADHD when he was 5 and started medication. The medication helped, but it took us about a year to dial in the correct medicine and dosage to really help him control his impulsiveness without stunting his personality. While in the midst of this dialing in while he was in Kindergarten, he became the target of a bully. The bullying was really bad and occurred on the bus and in the classroom. It's the type of thing that would have had to have been ignored by teachers vs. being overlooked. Chris became depressed and withdrawn and just completely not himself. When we finally discovered the bullying, I immediately brought it up to the principal and his teacher who proceeded to do all they could to completely ignore it. It was near the end of the school year, so that was easy. I believe the bullying is what triggered the Celiac Disease.

In November 2010, Chris was diagnosed with celiac disease very quickly after taking him to the doctors with joint pain. He has a very mild version of celiac disease and never had the bad reactions that I hear some have, but since being diagnosed, the times he's been glutened, his reaction has been as severe as developing a neurological tic that lasted almost 2 months.

Upon his diagnosis, I informed his school and started researching on a forum where I was told I should impliment a 504 for him. The school fought me on the 504 tooth and nail, acted like they'd never heard of celiac disease and just played really dumb. I renamed the 504 plan to a health plan, submitted it, and as I was dealing with the discovery of being pregnant with a baby with Down Syndrome, the fight kind of took a backseat.

His classroom has been great, but it's been tough having to pack his lunch every day and find things that work for a lunch that he'll eat (his ADHD meds cause his appetite to be somewhat supressed during the day). So, a few weeks after he's diagnosed and we go gluten-free with him, I learn there's another child in the school with celiac disease. The counselor actually was able to get us each other's contact information and yesterday, we got together to talk. Turns out, she went into school over the summer, worked through the entire cafeteria menu and developed a plan for her son to be able to eat every day in the cafeteria. There have been several occasions when my son has asked about something particular in the cafeteria to eat and they've come back with 'I don't know'. For example, he asked if the chef's salad was gluten-free, the lunch lady responded saying she could give him a side salad and keep his own dressing in the fridge. Turns out, after talking to the other mom, that the chef salad and all the dressings they carry are gluten-free. I just don't understand why they would tell him it wasn't.

Then, today, I get an email from the mom of the other boy and he was in another class where they were talking about the sense of taste and told they needed to taste things off of a plate that had gluten and non-gluten food all together. These kids are 6-7 and they have adults telling them to eat these foods! I bet there were no nuts on that plate. This other boy is very anxious about the gluten because he has awful reactions to gluten - like down and out for 3 days for the slightest bit of gluten. The whole procedure probably seriously upset him.

I emailed the counseler about the cafeteria to just see why they didn't tell me. I also emailed his teacher about the tasting and asked to be passed on to the teacher who does it so I can provide everything gluten-free or else Christopher was not allowed to participate.

Beyond this, though, the new counselor has really tried to impliment things to help eliminate the bullying and increase the inclusion. Like he started a club for first graders where they get together and discuss friends and how you make friends. He's also always around and on the playground, in the cafeteria, in the classrooms. Why go to so much trouble to promote inclusion and then do things to allow kids to feel so excluded???

My thoughts are to write the assistant superintendent of elementary education for the district and just explain what is going on and try to figure out what to do to educate on celiac disease and promote true advocacy for these students from the teachers and administration. I don't want to battle the school, but they really don't seem to want to work with us on anything. I'm so frustrated right now and I'm honestly concerned for my son's wellbeing at this school. UGH!

[Jungle]

Wow,

So I'd ask for one meeting with all the people who are in contact with your child in a school day including the principal. Then you can work out a plan together and make sure they all understand the seriousness of celiacs. I'd have a few reading materials ready for them and go through it at the meeting to ensure everyone understands the situation.

#1 Train your child to NEVER eat something that you haven't Okay'd. Then if an issue like "lets all taste these things" comes up he knows to opt out. Explain to him that the worst thing the school can do to him is send him to the office and call you. At which point you will come to his rescue with guns Blazing! For him to be put in a situation where he has to risk his health just to follow the teachers instructions is crazy. He is going to need to stand up for himself at school and will need to be coached about how to do that. Discussing this plan in front of his teacher may be a good idea. Also, a substitute teacher needs to be aware so including this in a sub plan would be nice.

Good luck!

[Norris]

It makes sense to me that your child's celiac was triggered by the bullying. My daughter's autoimmune response was triggered by a nasty case of the flu.

The school district needs to get their act together. The worst we've run into with my daughter's schools are days when kids or parents bring gluten-laden treats to class without any prior notification to us. Our girl ends up feeling awfully left out on those occasions. If we do receive a heads up, we send her with a gluten free treat or drop something off for her. Initially, she was a little embarrassed that she couldn't eat what the other kids could, but her close friends rallied around her to help explain to others her needs or even to tell lookie loos to mind their own business.

It's just awful that a teacher or other adult would attempt to coerce a child to eat something that could endanger him. I suggest you meet with administrators and district health nurse supervisors to make sure everyone is on the same page. The district owes you a huge apology and their sincere guarantee that they can get on top of this.

[Kimmik95]

Honestly, I've done most of that. I've talked to the counselor, his teachers, and the school nurse. I have a Health Plan in his file and all of his teachers and anyone who interact with him have received a 1 page summary of the form.

We're working with Chris on the eating thing. He's actually pretty good at asking if something is gluten free. He was given 3 gluten snacks at a daycamp over Christmas that he thought were fine because the counselor gave it to him and he knew I talked to them about what he can and cannot eat. He wasn't suppose to get anything outside of what was brought from home. That, I think was enough for him! He's only 6, so that's tough and he's only been diagnosed since November. I have noticed that he does ask his teacher and even my parents if things are gluten free if he's not sure.

I talked to the counselor again yesterday and there was a complete communication breakdown on their part which is why no one informed me of the ability of Chris to eat in the cafeteria - they didn't know that something had been figured out - crazy! The counselor is working on a form that can be used by the school to accomodate all alergies and food intolerances. He said Chris and the other boy are the first ones in the school with celiac disease, so that's why they are so confused. I feel there pain, I guess!

I think where I went the paperwork and classroom route, the other parent concentrated on the cafeteria. There was no cross communication until we got together.

Wow,

So I'd ask for one meeting with all the people who are in contact with your child in a school day including the principal. Then you can work out a plan together and make sure they all understand the seriousness of celiacs. I'd have a few reading materials ready for them and go through it at the meeting to ensure everyone understands the situation.

#1 Train your child to NEVER eat something that you haven't Okay'd. Then if an issue like "lets all taste these things" comes up he knows to opt out. Explain to him that the worst thing the school can do to him is send him to the office and call you. At which point you will come to his rescue with guns Blazing! For him to be put in a situation where he has to risk his health just to follow the teachers instructions is crazy. He is going to need to stand up for himself at school and will need to be coached about how to do that. Discussing this plan in front of his teacher may be a good idea. Also, a substitute teacher needs to be aware so including this in a sub plan would be nice.

Good luck!

[Kimmik95]

My son's teachers (his original went on sabatical for 2nd semester) have been amazing! I have some cupcakes in teh freezer and I just take some in to leave at school. When a child brings in a dessert for a birthday or whatever, Chris' teacher just takes one of his out of the freezer and he gets a treat too. His classroom has been amazing as well. The other day, a boy brought in M&M's for a treat instead of cupcakes or something. They've also done things like bring in gluten-free pretzels so Chris can enjoy all of the treats without risk of contamination. This year has been a total 180 from last year in that respect!

I've talked to the couselor about everything. There was just a really big communication breakdown. My son and this other boy are the first 2 kids diagnosed with celiac disease in the school so this is all new to them. Because of what we are going through, the counselor has been prompted to come up with a procedure and documentation for allergies/intolerances. yeah!

I don't know that the other parent has anything in her son's file about his celiac disease. I think I went the classroom/paperwork route and she went the cafeteria route. Chris' teacher was actually very on top of the tasting deal for me and the teacher doing the tasting actually has a daughter who's gluten-free, so she knows the CC deal and everything. I think she just didn't realize the other child had celiac disease. His teacher isn't familiar with celiac disease, so she's not very helpful, unfortunately.

It makes sense to me that your child's celiac was triggered by the bullying. My daughter's autoimmune response was triggered by a nasty case of the flu.

The school district needs to get their act together. The worst we've run into with my daughter's schools are days when kids or parents bring gluten-laden treats to class without any prior notification to us. Our girl ends up feeling awfully left out on those occasions. If we do receive a heads up, we send her with a gluten free treat or drop something off for her. Initially, she was a little embarrassed that she couldn't eat what the other kids could, but her close friends rallied around her to help explain to others her needs or even to tell lookie loos to mind their own business.

It's just awful that a teacher or other adult would attempt to coerce a child to eat something that could endanger him. I suggest you meet with administrators and district health nurse supervisors to make sure everyone is on the same page. The district owes you a huge apology and their sincere guarantee that they can get on top of this.

[suziq0805]

I'm a teacher so hopefully I can help you out here. All staff just needs to be aware that even a tiny crumb can be harmful to you child. If they don't completely understand celiac they may think that if they are not seeing a reaction then they must be doing everything correctly.

Our district prepares all of our lunches in a central location and then they are loaded on trucks and driven over to the individual schools. So the staff that is serving the lunches truly may not know if something is gluten free. If your school operates like this, the staff serving is not those that are preparing.

As far as the bullying issue. Our staff has been reading a couple of AWESOME books. If you haven't read them I would highly recommend them- you won't regret reading them. Jodee Blanco is an author that has written 2 books (Please Stop Laughing at Me and Please Stop Laughing at Us). She also has a national speaking tour where she goes out to speak to schools to help them with bullying issues. She was bullied as a child and has written these books about her experiences. In them she offers advice to help families effectively help children that are being bullied. I loved both books. It opened my eyes as to how ineffective parents and teachers can be in dealing with it- even if they really think they are doing the right thing.

[T.H.]

So sorry it's been such a frustrating experience, especially when it is so closely tied to keeping your little one safe!

I don't have much to add in the realm of the classroom - seems like everyone has some great advice and you're on top of it all. But I did have a question for you: has the doctor that prescribes your son's ADHD medication set up a schedule to look at him again after he's been gluten free and healed for a few months? If not, you may want to add that on to the to-do list. It's not unheard of for ADD and ADHD symptoms to be a result of undiagnosed Celiac Disease and to lessen considerably or disappear on a gluten free diet.

Not always, obviously, but enough that an informed doctor can help you to test out weaning off the meds slowly to see if they are needed any longer, you know?

[Kimmik95]

Thanks for the response. It is always good to hear a teacher's perspective. I'm a teacher too. I personally have made everyone very aware of all of the issues. His teacher at the beginning of the year was very familiar with celiac disease as her husband has it, so that was a big help. I submitted a 504 (they wouln't actually let me do a 504, so I called it a health plan) and it went into his file, all of his teachers got a summary that I created, and his teacher discussed the celiac disease with all of the other first grade teachers. The other mom didn't do this, which, I think, is why she's having problems.

The cafeteria prepares everything in house. I didn't know that or I would have done what the other mother did.

The bullying issues still has me steaming. I teach middle school and there's so much bullying there and as sneaky as those kids try to be, it's still very obvious and easy to catch. What was going on with my son was totally obvious on all fronts and should have been caught. I just still can't imagine bullying to that degree would ever happen in Kindergarten. That concept just blows my mind. The counselor and principal at his school just completely ignored everything. That's a shame because the boy who was bullying needs just as much help as my son needed. Luckily, my son had a great summer of some great camps that really brought him back around. He wasn't 100% by the start of school, but was much better. His class this year is amazing. The teacher was the best I could have asked for and the other kids in his class are so nice. The school also got a new counselor who has made it his job to eliminate any bullying. He's so present all the time and the kids adore him. I am not a fan of the principal and neither are most people that have any special circumstances. He just doesn't want to deal with it.

My biggest problem with the school is the lack of communication on their part about this. If they would have been on the same page, it would have saved both me and the other parent a TON of aggrevation. I talked to the counselor on Thursday and he's going to work on drawing up a health plan for the school and a procedure for allergies. He said my son and the other boy are the first in the school diagnosed with celiac disease, so I see where those problems come up. We are now moving in the right direction, I think.

I'm a teacher so hopefully I can help you out here. All staff just needs to be aware that even a tiny crumb can be harmful to you child. If they don't completely understand celiac they may think that if they are not seeing a reaction then they must be doing everything correctly.

Our district prepares all of our lunches in a central location and then they are loaded on trucks and driven over to the individual schools. So the staff that is serving the lunches truly may not know if something is gluten free. If your school operates like this, the staff serving is not those that are preparing.

As far as the bullying issue. Our staff has been reading a couple of AWESOME books. If you haven't read them I would highly recommend them- you won't regret reading them. Jodee Blanco is an author that has written 2 books (Please Stop Laughing at Me and Please Stop Laughing at Us). She also has a national speaking tour where she goes out to speak to schools to help them with bullying issues. She was bullied as a child and has written these books about her experiences. In them she offers advice to help families effectively help children that are being bullied. I loved both books. It opened my eyes as to how ineffective parents and teachers can be in dealing with it- even if they really think they are doing the right thing.

[Kimmik95]

Thanks for the response. We've been on top of the medicine. I really thought there would be a change in the fact that he might be absorbing more of the medicine now that he's actually absorbing things! We were hoping that maybe some of his focus issues were due to being malnutritioned as well. I didn't expect him to be 'cured' as then he would have been misdiagnosed with ADHD and I knew that wasn't the case.

Funny thing is that we're actually seeing the opposite effect. His meds used to perfectly last him from the time he woke up to the time he went to bed. Now they just don't seem like they are quite enough. He's starting to grow and as he grows, his dose would have to be adjusted to accomdate that, but he really hasn't grown alot at this point We had a med review right after his endo and before we got the results, which was convient and his next one is the beginning of May. I was going to request an earlier review, but decided to take some time to really see how this plays out. That will be almost 6 months, which should be good timing.

So sorry it's been such a frustrating experience, especially when it is so closely tied to keeping your little one safe!

I don't have much to add in the realm of the classroom - seems like everyone has some great advice and you're on top of it all. But I did have a question for you: has the doctor that prescribes your son's ADHD medication set up a schedule to look at him again after he's been gluten free and healed for a few months? If not, you may want to add that on to the to-do list. It's not unheard of for ADD and ADHD symptoms to be a result of undiagnosed Celiac Disease and to lessen considerably or disappear on a gluten free diet.

Not always, obviously, but enough that an informed doctor can help you to test out weaning off the meds slowly to see if they are needed any longer, you know?

[sydneysmommy]

I don't have a lot of advice, as I'm dealing with some difficult school as well. Your son was diagnosed. I'd love to have my girls' school cooperate with me on their diets and lactose free issues but I have to fight red tape and jump through hoops to get them to deal. Yet everyone seems SO UNDERSTANDING and cautious if a kid has a nut allergy.

All I wanted to tell you was that I think you're awesome and doing a fantastic job!

[Kimmik95]

It's crazy, right? The funny thing is that the person who has probably ben one of the most understanding is my cousin. Her son has a peanut allergy and she said to me one time that if her son has something with peanuts, she has an epipen - there's no quick fix for Chris. I thought that was beyond understanding, actually. I try to explain it to the people at the school that way. No, he won't die from consuming gluten, but his insides will be distroyed for weeks over the most minor of intakes.

I don't have a lot of advice, as I'm dealing with some difficult school as well. Your son was diagnosed. I'd love to have my girls' school cooperate with me on their diets and lactose free issues but I have to fight red tape and jump through hoops to get them to deal. Yet everyone seems SO UNDERSTANDING and cautious if a kid has a nut allergy.

All I wanted to tell you was that I think you're awesome and doing a fantastic job!

[seezee]

Fighting with schools to get basic/simple things is the most frustrating and upsetting thing. We had just an awful time with my daughter's school the year after she was first diagnosed. She ended up switching schools. There's a pretty steep learning curve for some with celiac. They can read the stuff, nod their heads, but they just don't get it. It just starts to feel like you are in the twilight zone dealing with this stuff. Plus it's just awful sending your kid into an environment where you know he's not safe. Hang in there and keep fighting.

On the up side there have been zero problems with her new school. Everyone has been helpful and normal. If they make a mistake, they'll just say sorry and it doesn't happen again.

I saw this recently;

Open Original Shared Link

It looks like this is not uncommon.

[Kimmik95]

Thanks. I think the counselor is starting to get it. I try to explain it to people that it's very similar to a peanut allergy in the cross contamination, but where as with a peanut allergy, the child might need an epipen immediately, my child won't die from ingesting gluten. However, when someone with a peanut allergy gets an epipen, the issue's over and done with where my son will suffer for up to 2 months while his body continuously attacks itself. The principal at our school is useless. I'm waiting for the day I have to send my soon to be daughter (who is diagnosed with Down Syndrome) to his school and he tries to fight me on an IEP. He's so clueless.

Fighting with schools to get basic/simple things is the most frustrating and upsetting thing. We had just an awful time with my daughter's school the year after she was first diagnosed. She ended up switching schools. There's a pretty steep learning curve for some with celiac. They can read the stuff, nod their heads, but they just don't get it. It just starts to feel like you are in the twilight zone dealing with this stuff. Plus it's just awful sending your kid into an environment where you know he's not safe. Hang in there and keep fighting.

On the up side there have been zero problems with her new school. Everyone has been helpful and normal. If they make a mistake, they'll just say sorry and it doesn't happen again.

I saw this recently;

Open Original Shared Link

It looks like this is not uncommon.