Sending A Sick Child To School.

[dilettantesteph]

My child (age 13) has been diagnosed for almost three years now. He is very sensitive to low levels of gluten and reacts to all sorts of cc so he still gets glutened a lot. The last couple of times were after using a "gluten free" denture cleaner on his orthodontic retainer, and after cleaning the garage and forgetting to carefully clean up afterwards.

It is clear that I can't send him in to school at first when he has to run to the bathroom so frequently that he couldn't make it on the bus. But, at what point in the recovery process do I make him go back? With a bad glutening he really can't think straight for a week or so. After the garage incident I sent him back in after one day. He had a math test, but needed a lot of extra time because he was having a hard time concentrating. Usually he is one to finish tests early. The teacher was not understanding despite my e-mails of explanation about his condition. It is early in the year and she hasn't gotten to know him yet. She also told me that she could tell that he was upset, which I guess was because he was feeling so lousy.

This time he was out of school for three days. He's in 8th grade and has two high school courses so more than that is an awful lot to make up. He is still feeling really lousy and I felt really bad watching him walk off to his bus. I know he will have a hard time all day. When he is glutened organization is such a problem for him and he will need to see all his teachers to get make up work. They will tell him instructions too fast and he won't be able to follow. If I keep him out longer, he will have even more work to make up and won't have the weekend to do it in. Tomorrow is a half day so he can't get make up work then.

I know that he needs to learn to deal with being glutened because he will have this condition for the rest of his life and will need to hold a job and take care of himself. I just don't know how tough on him I should be.

Any thoughts?

[ravenwoodglass]

Celiac is covered under the ADA. You need to talk with the school and let them know what is going on and how being glutened effects him. Perhaps arrangements can be made so that he can have extra time on tests and certainly it can be arranged that he have his assignments emailed to him on the days he is not in school so he doesn't fall to far behind.

If you can figure out how he is getting glutened so often that is going to also help. Is your home gluten free? It may need to be to have him be his healthiest.

[kareng]

Celiac is covered under the ADA. You need to talk with the school and let them know what is going on and how being glutened effects him. Perhaps arrangements can be made so that he can have extra time on tests and certainly it can be arranged that he have his assignments emailed to him on the days he is not in school so he doesn't fall to far behind.

If you can figure out how he is getting glutened so often that is going to also help. Is your home gluten free? It may need to be to have him be his healthiest.

What part of the ADA mentions Celiac. Tried reading it and found stuff about reasonable accomadations for blindness, deaf, wheelchairs, etc. Didn't really see anything about celiac disease. Do you know where I should look? Thanks

[weluvgators]

I think that requesting a 504 evaluation is in order for your child. I think that there needs to be a 504 or Individual Health Care Plan (IHCP) in place for his safety and well being at school. Part of the plan is EDUCATION about his medical condition for everyone involved in his care. I took a letter from our pediatrician that included our suspected diagnosis and a request for a "classroom as gluten free as possible" - the new Illinois policy dictates that our school should have been far more proactive in approaching us about our medical needs that are all documented on the state forms for school admittance! I can send you a more comprehensive draft letter that you may want to provide to your pediatrician/gastroenterologist as a template to write (it is based on an excellent letter that I ran across from a pediatric gastroenterologist that really does seem to understand the accommodations needed for a celiac person). Being very specific in what documentation we need from our healthcare providers has been the most effective approach for us so far, although it has had limitations. While I have searched high and low for knowledgeable healthcare providers, they simply do not have a full understanding of what we are dealing with.

In the 504/IHCP planning, I would include provisions for accommodating his needs after he has been glutened (whether at school, home or unidentified source). I would try to get them to have a systematic way for him to get his makeup work to do at home if possible (assuming that he can get through some of it while recovering from being glutened while at home). I would also request that all makeup work instructions be provided in writing (since he cannot process the quick audio that they are providing him). I would also try and outline timelines that you expect to be reasonable without causing him undue stress. He has a lot of healing and work to do to get his health back under control, and the school should be able to have an understanding of this. You will need to work with your doctor at times to provide whatever documentation the school feels is necessary at times, but YOU can be the person that coordinates all of that. Just have the school dictate *what* additional information that they need from his doctor. And always make provisions in the plan to make changes as his medical condition and needs may change.

I have not yet run across information specific to increased absences due to medical conditions, but I know that it exists for some students (not necessarily specific to celiac disease, but I imagine that some pediatric celiac cases are so severe when diagnosed that this has been addressed somewhere before - I think it varies by state, but I have heard there are provisions for hospitalized students to maintain school education). Does your state have any good resources for getting a 504 and/or IHCP? Illinois rolled out additional information this summer, and I am excited to have their documents to present to our district. As well, I already know that the district has access to some excellent advice from our state Board of Education.

I would expect that you will want to be in close contact with his doctor for the gluten episodes that you suspect are interfering with his abilities. We call our doctors a lot and talk with the nurse to get current condition notes into our medical files. Some of them take our regular calls as part of their ongoing services, and some of them request that we do phone consultations with the doctor (these have included a more lengthy discussion of issues as well). Of course, there are times when they just shake their head in wonder and recommend that we go see yet another specialist . . . but at least now we have a network of specialists that all agree that they do not fully understand our gluten intolerance issues.

I don't know if that helps or not, but I would go easy on your son. I think he needs to focus on healing and recovery, and stress is detrimental to both. I wish you luck in figuring out how to handle this.

[Kay DH]

It might be useful having a letter from your doctor regarding his diagnosis and symptoms, and talking with the teacher. When I get glutened, which is always cc from a "gluten free" source, my symptoms vary but a hard glutening results in brain fog. Effect is a lot like having a bad concussion, and it takes about a week for my cognitive abilities to return to normal. It would be particularly hard being hit with the emotional swings during the recovery. Has he spoken with a school counselor? Teen years are hard and the pressure to fit in can take their toll. I hope his friends are understanding and he is persistent enough to say no if students try to cc him. I assume so if he is that sensitive.

[weluvgators]

What part of the ADA mentions Celiac. Tried reading it and found stuff about reasonable accomadations for blindness, deaf, wheelchairs, etc. Didn't really see anything about celiac disease. Do you know where I should look? Thanks

Here is one page that discusses the issue:

Open Original Shared Link

"Food Allergies" are gaining wider recognition and acceptance as a disability that needs specific accommodation in the school setting. Our district is encouraging us to implement Individual Health Care Plans as opposed to the 504, and I am trying to better understand the distinction. But simply requesting a 504 evaluation was the key to making effective change in our school . . . and then they made the one requested change because what they were doing was against district policy . . . not to accommodate the child - whatever! Wish they would have followed district policy last year when we were making the SAME REQUEST. They even agreed last year that what they were doing was against district policy, but they were unwilling to change it . . . until I walked in the office this year and said, "I want a 504 evaluation for my child." I don't know if that was the impetus for getting the district oversight involved, or perhaps it was the Illinois legislation that put a comprehensive Food Allergy Plan in place over the summer for our state and districts have to have their plans developed now. I don't know, but I like the new tone of our school better already. But the casual providing them information (including documentation from our doctor) and trying to talk with them was NOT working. I just hope our meetings go well in the next few weeks.

[kareng]

Here is one page that discusses the issue:

Open Original Shared Link

According to your link, celiac disease isn't part of the ADA. It is covered for schools under another law.

I think you could argue it for employment with what I have seen, keeping in mind the "reasonable accomadations" and "job requirements".

I was hoping to find something to use for other places. Specifically, a stadium that has events but doesn't let you bring in food. They say they conform to ADA standards. Hoping to find something that wouldn't require them to provide safe food (not a reasonable accomadation) but to allow someone with a doctor's note to bring thier own.

Celiac disease is NOT specifically listed under the rules of the National School Lunch Program, Section 504, the Americans with Disabilities Act or its implementing regulations.

Know Your Rights

The Department of Education (ED) Office of Civil Rights regulations define a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. The regulations do not spell out every disease and condition that may constitute physical or mental impairments. Section 504(a) of the Rehabilitation Act of 1973, as amended, 34 C.F.R. 104.3(j)(2)(i) and the Americans with Disabilities Amendments Act of 2008 (ADAAA), Title II regulation at 28 C.F.R.

[weluvgators]

According to your link, celiac disease isn't part of the ADA. It is covered for schools under another law.

I think you could argue it for employment with what I have seen, keeping in mind the "reasonable accomadations" and "job requirements".

I was hoping to find something to use for other places. Specifically, a stadium that has events but doesn't let you bring in food. They say they conform to ADA standards. Hoping to find something that wouldn't require them to provide safe food (not a reasonable accomadation) but to allow someone with a doctor's note to bring thier own.

Celiac disease is NOT specifically listed under the rules of the National School Lunch Program, Section 504, the Americans with Disabilities Act or its implementing regulations.

I was not trying to point that celiac is specifically listed as a "disability", as it is not. I was trying to provide information so that each individual can approach this as their specific situation requires. Here is another link:

Open Original Shared Link

It highlights something very important in this discussion,

Celiac disease by itself does not qualify a student for services. The illness must cause a substantial limitation on the child

[kareng]

That info said what I had thought - that it isn't covered by the ADA. Your kids are covered for school by that other act about schools and education.

Ravenwood is saying that we are covered, so I wanted to find out where that is. If not in the original text of the bill, perhaps there is an update or court case she is referring to. Or some sort of interpatation of a piece of the act. Something we could all quote when needed.

[twohokies]

I scanned over a few of the prior posts and saw mention of a 504 plan, etc.

When I read your initial post and the effects on school that a gluten incident has, "IEP/504 plan/child study" was screaming in my head. I haven't done my research but it looks like others have and that celiac isn't directly covered. HOWEVER, if you approach your school administration, explaining the effects of this on your child's schoolwork, they should be open to working with you on accommodations. Step 1 is to focus on providing homework when your child is out, extended test times, etc. for when he returns to school before the fog clears 100%. Depending on the school, they may or may not require some sort of doctor's evidence with each gluten incident (if it's possible). Some schools are more flexible with what they will or won't do for you. Stay strong and know that your child has the right to FAPE (Free And Public Education). My friend has 2 boys with Cystic Fibrosis who are out of school enough to warrant IEP's so that they can get work at home while sick and make-up tests upon their return. They don't need any other accommodations, so I don't see why celiac wouldn't be similar except that it's not yet on THE lists.

And I will tell you that is possible to accommodations/services for illnesses that are not on THE lists. It's not easy though and they make you jump through hoops. My 7 year-old has Sensory Processing Disorder and it is not on most schools' lists of approved medical conditions because it's not a nationally recognized illness YET. However, we have been able to secure what my child needs in the school to give him FAPE - whether it is sensory breaks, extended time for writing tests, special education teachers to help him with his writing processing skills or social skill development. It was a long uphill battle, I won't lie to you. And some of the schools we've been in are easier than others and support us more. So there's no black and white. Hopefully if you approach your school admin. with your proposal, they will accept your ideas and help get them implemented.

I do need to say thank you for posting this issue you are having. I am putting it away for a few years down the road when my 3 year-old celiac is in school. No clue how sensitive she'll become since we're only 2 months diagnosed, but good information to have.

Good luck!

[scarlett77]

The ADA doesn't have the exact words "Celiac Disease" nor does it list out ANY specific debilitating diseases, disorders, etc that qualify as disabilities. HOWEVER the following is a link directly to the ADA and I interpret it to include Celiac because of this statement:

" ( Major bodily functions

For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions. "

As well as this statement:

"(D) An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active."

Open Original Shared Link

Does that help?

[scarlett77]

To add to my last post the 504 plan is actually part of the Rehabilitation Act of 1973 and the below fact sheet is really what you need. The ADA helps to define what is a "major life activity" is so it really doesn't do much to help you. As PP's said creating a 504 plan in relation to the RA is really what you need to focus on.

Open Original Shared Link

Does that make sense?

[kareng]

The ADA doesn't have the exact words "Celiac Disease" nor does it list out ANY specific debilitating diseases, disorders, etc that qualify as disabilities. HOWEVER the following is a link directly to the ADA and I interpret it to include Celiac because of this statement:

" ( Major bodily functions

For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions. "

As well as this statement:

"(D) An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active."

Open Original Shared Link

Does that help?

Thats a good one! Should be able to use that to argue that celiac disease is a disability in some circumstances. Probably won't get a closer parking place!

[kbtoyssni]

Maybe as he's getting over getting glutened you could send him to school for half days to help him not get behind. When I got mono in high school I would go in for my hard classes and skip the ones that were easier for me to make up on my own. Also, with a 504 plan you could try to work his schedule to have all his harder classes back-to-back so it's easier to go home for the easy classes and study halls. It might be too late for this year, but next year you could try that.

[dilettantesteph]

Thank you for all your ideas.

[buffettbride]

I completely feel your pain. Thankfully my daughter (also 13, 8th grade) does not get glutened as much as your son, but when she does (about twice a school year), it's a doozie.

The actual day of the glutening, she'll go to the nurse's office and call me to come pick her up. She's worthless because of the migraine, bloating, and superpoo. Usually the next day she feels well enough to go to school, but then she is super spacey and out of it for about a week.

THEN, about a week after the spacies end, she ends up with a wicked sinus infection which sometimes results in another 1-2 days of missed school and the work she has to make up to go with that.

She's never been able to make up all of her work without getting dinged for some sort of missing assignment. I'm hesitant to pull the ADA card because I don't want her to think she can use her disability to get out of class (she is a teenager after all). I could probably do a better job of negotiating these situations with her teachers, but I also know she does not like being singled out because of Celiac.

It's tough stuff, but your post really hit home for me (especially since we're into the sinus-infection stage right now). Ugg.

[dilettantesteph]

I'm really hesitant to have special accommodations made because he might take advantage too. Plus, he is going to have to learn to deal with this. The rest of his life will be like this, and people won't accommodate it forever. I feel like it could hurt him in the workplace eventually unless he learns how to deal with it now. So far he is a good enough student that he manages despite his problems. I hope things get better as we get better with the diet. It's been 3 years so far, and it gets better and better.

[jhuebner]

So, we've "been there" tried that & still aren't getting very far with our school. Our 15yr old son has been diagnosed with "Severe Celiac" for the past 2 years. 8th grade he missed ~10 weeks total. They worked with us, "he passed"

High school, uggg... We know the Administration, The Teachers, (this is our 3rd boy & 3rd w/ an IEP or 504) we know the drill. He missed 63 days in 9th grade. He was just "given homework" and expected to do it, not much tutoring, time @ school, but the IEP just didn't work! He "failed" most of his classes, that's not the boys' fault, it's the IEP not working.

He'd miss 2 weeks at a time, get back to school for a week, and be back home.

We live in a gluten-free house! Totally, mom has a Celiac diagnosis too & we just "cleaned house" & threw out everything!

We have letters from his GI specialist, we have requests from our Registered Dietation, the cooks are working hard to keep him gluten-free.

The classroom has failed us, failed him, much worse than the F's A kid w/ an IEP shouldn't FAIL... If he does, the IEP has failed.

We're just frustrated, school's over, we've just found out that they aren't expecting him to do Summer School, but he will be in "remediation" classes in the fall. That's of course along with his regular requirement as a 10th grader.

anyone with experience "getting school" to get it ... please chime in!

Thank you!

[dilettantesteph]

I am so sorry. It is so hard, because a sick child isn't a slow child, necessarily. How do you get your child enough challenge to be interested in school when he misses so many classes?

How is this going to translate to college and career? It is such a worry. What are you doing to try to keep him more healthy?

Our school did agree to keep a desk food free for him in each of his classrooms. They e-mailed the teacher about it. My daughter has the same issue. When she had a sub, her desk was full of crumbs since the sub knew nothing about it. They have suggested a meeting at the beginning of the year to discuss all this. Now we are getting a new principal so that will change things.

I think a lot of the more sensitive kids end up being home schooled.

[kareng]

We have letters from his GI specialist, we have requests from our Registered Dietation, the cooks are working hard to keep him gluten-free.

anyone with experience "getting school" to get it ... please chime in!

Thank you!

Sounds rough! This is one thing that stood out to me. Are you saying he is eating food prepared by the school cafeteria? That sounds like a trouble spot to me. I would send my kid with a safe lunch from home.

There is on- line schools that many states will pay for. What about some tutoring for the summer to try to get him caught up a bit? Maybe you could get the school books from the school and help him have a couple of hours each day to learn what he missed? Maybe you should insist on some summer school?

[dilettantesteph]

I would send my kid with a safe lunch from home.

Good catch Kareng. I agree completely. I'd concentrate more on keeping him healthy rather than making the school help him when he misses school.