School Harrassing 17 Year Old Celiac

[debimashni]

I am so frustrated with my son's school administrators' ignorance and lack of interest in his diagnosis of celiac disease.

My 17 year old son, Omar, was diagnosed last spring with celiac disease after many years of illness including diarrhea, fatique, elevated liver enzymes and various other abnormal lab tests. Since he doesn't look like what the school considers a celiac patient to look like (i.e. emanciated), they don't believe he is really ill. He also has a difficult time following a gluten free diet, so the school administrators feel he brings this on himself. Of course the school on average only has a gluten-free lunch available approximately once every 3 weeks, so they are clueless about the celiac diet anyways.

Omar is now in his senior year of high school. He has reached his 10th absence already this year in some on his classes, so I now have to provide a doctor's note for each absence. His GI doctor sent a letter last year that stated his diagnosis of celiac disease and that they should expect that he will have frequent absences and will be late to school on occasion because of this. If he uses the bathroom between classes, he receives a tardy. If he isn't "finished" in the bathroom and in class within 3 minutes after the bell rings, he is given an unexcused absence. One teacher made a comment in front of the class last week about him always being in the bathroom and another student told the teacher to lay off him as he has a disease...talk about IGNORANT! I am so concerned that the school will screw him over and he won't graduate. Our principal already doesn't like him...he actually told me that Omar is lazy because he misses so much school and doesn't always complete his homework.....this principal doesn't agree that Celiac can cause fatique (even though Omar's labs show anemia and virtually non existant levels of ferriten in his body). The principal thinks that since Omar's twin sisters were valdictorian of their class that Omar should do as well.....celiac has nothing to do with it!

Does anyone know if the American with Disabilities Act covers Celiac? We need some assistance with this school. There are only 380 students in Omar's entire high school...its not like he is just a number there!!!

[Mom22]

My blood pressure has risen just reading your e-mail and I don't even know you or your son, Omar. I'd go over the school principal and file a written complaint with the superintendant of Omar's school district, as well as, ask the superintendant who their solicitor/legal counsel is as you would like to have their name if you desire to pursue legal action in this matter. This will definately get their attention. School districts hate the thought of a civil action. This may seem extreme, but it will get their attention very quickly.

Mom 2 2 children with celiac

P.S. I work in the legal field and my "legal" wheels are always turning

[plantime]

Definitely go to the superintendent. The school staff are being ignorant, and the way they are treating your son is illegal. If you have to, pay a lawyer to speak to the school board about this. Talk to the school board yourself. Take them copies of your son's med reports, and explain to each one individually what is going on. Talk to your doctor, see if he will talk to the principal and staff face-to-face. Whatever you do, don't give up. Omar is entitled to an education in public schools. They have no right to deny him just because he has Celiacs.

[lovegrov]

The ADA does cover celiac, at least in school settings. I would advise that you try the celiac forum at delphiforums, as there are several people there who have been through this. You'll have to register (free) to ask about it. You might have to take this directly to central administration.

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I'll also go into my lecture mode just briefly. Your son WON'T get through school if he doesn't stick to the diet. The school has to realize there will be occasional mistakes and bad days, but they probably also have the right to expect your son will work as hard as he can to stay gluten-free.

richard

[celiac3270]

Celiac is covered in the Americans with Disabilities Act. It definitely helps you if he's in a public school, rather than a private school. With a private school, they should be accomodating, but don't have to be--they can run everything by their own rules. In a public school, however, there is an obligation to provide a gluten-free lunch if it is needed. If you have a doctors' note, that helps further.

[debimashni]

Thank you everyone for your responses. Omar's doctor is sending another letter to the school today and I am also emailing an article on celiac, along with a brief explanation of Omar's symptoms to each of his teachers, asking them to please be patient and understanding with him. I am also asking that a note be left for all subsitute teachers so that Omar's frequent use of the bathroom isn't a class discussion again. I approached the school dietician last spring about gluten free school lunches for Omar, but she hadn't heard of celiac disease. I decided at that time that it would be better for me to provide all lunches.

I neglected to mention in my earlier posting that I have celiac also. I was diagnosed last March and it was then that Omar's doctors' were finally able to figure out what was wrong with him. I have adjusted to a gluten free diet easier than Omar has, although I think that I am finally getting through to him. I have been educating his friends also, and they try to make a pitt stop at Taco Bell when they are hanging out. I make all of our breads, cookies, pizzas, even fried chicken from scratch...the problem occurs when I am ill (I also have Behcet's Disease) and Omar has to fend for himself.

If the school gives us anymore trouble after this, I will talk to the superintendent and ask for his support in this. I feel that the school shouldn't treat Omar's illness any different than any other chronic illness. I have no problem hiring an attorney if that is what it will take to make sure that Omar is treated fairly. I am hoping that another attempt at educating the staff with be enough..but only time will tell.

[lovegrov]

"I have been educating his friends also, and they try to make a pitt stop at Taco Bell when they are hanging out."

You do know that the only thing that's gluten-free at Taco Bell are the beans and cheese. The tacos and the chips are NOT gluten-free.

However, if he really needs a fast food place Wendy's, McDonald's, Burger King and Hardee's have a number of things we can eat. Each restaurant at its web site has either a gluten-free list or a list of all the ingredients in each item. We can have the "low carb" burgers (no bun).

richard

[Guest gfinnebraska]

I am also the Mom of a senior, and I can not imagine what you are going through. My heart goes out to you and your son. Does your district allow you to "opt out" to another school district?? It may be an alternative for you. Our high school is smaller than yours, and when the principal and a student/parent lock heads, going to a neighboring town is always an option. It should NOT be necessary, but it may be the end to a lot of frustration. Good luck and please keep us up to date on his progress ~ this should be his happiest year... not the most difficult!!

[debimashni]

Thank you Richard for the delphi forums website. I read many of the school related postings and found this webpage that has form letters for various school staff. This is the link if anyone else needs it.

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I tried to talk Omar into attending a different school district this year, but he has been with the same group of kids since kindergarten and didn't want to leave. I have 5 daughters who have also graduated from this school....and have never had any problems with the school until last year. Before we knew what was wrong with Omar, he was having much difficulty with math. We requested additional time to complete a class, but it was denied ( I was told that he is lazy and he was told that he is NOTHING LIKE HIS 4.0 gpa sisters.) Anyways, after fighting with the principal (he has only been there 2 years and has been pulled in front of our school board by several parents), I just paid for Omar to make-up a class by taking an online class through our state virtual high school.

I was really looking forward to having the youngest of my 6 kids enjoy his last year of high school, but I can hardly wait until this year is over.

[MySuicidalTurtle]

If his teachers are talking about it in class. . .do they know he has a promblem? If they do know of his celiacs then I belive they aren't allowed to disscuss it or his problem in class even if everyoe knows.

If you fear he won't graduate then leaving the same group of kids for the last half of the year to attend a more understanding school should not be an issue.

My brother is a senior with celiacs and AD/HD and at the start of the term made a 504 plan with the school. I suggest you do the same.

[j9n]

I am not very knowledgable on this subject but you may want to check out the federal HIPAA regulations. It covers a persons privacy in regards to their medical conditions. That teacher may be inviolation and can be fined if guilty. I would take it to the superintendent, human resources department head, and the board. Be aware, though, that anything you say in a board meeting is public knowledge and can be printed in the paper, etc. Oh, and make sure all conversations are followed up in writing. I heard one administrator say that they can not do anything unless it is in writing. And if all else fails you can take it to the local paper. School districts DO NOT want any negative publicity. Remember that public schools are held under very strict federal regulations and can lose federal funding and grant money if they do not comply. Also call the head of the food services dept or business department. Alot of the food program is either federally funded or state funded. Another resource could be the special education dept. They are used to dealing with students with needs and should know the law very well.

I hope this helps!

[Thomas]

May I suggest speaking with the superintendent and anyone you can at the school board now, instead of waiting for something else to happen.

[darlindeb25]

hi deb---just wanted to say that i can relate to you--my son doesnt have celiacs, at least we dont know that he does--he was ADD and a very good size guy--6'3 and 270--he was the line for the football team, but always struggled in school--i have 5 children and he was compared to them too and he, at 23 still has a chip on his shoulder because of some of the teachers and the principal--one meeting stands out in my memory--was the principal, 3 teachers, school social worker, joe and myself--the principal was saying things inappropriate about joe and i could tell by joe's face that he was hurting and i spoke up and said, "excuse me", the principal preceeded to tell me to be quiet--joe exploded and i honestly thought he was going to hit the principal--he told that man that he was never, ever to show disrespect towards his mom again and he stormed out--this principal was always of the opinion that if another kid teased joe, that joe should just be the big guy he is and walk away--joe never thought that fair because he knew if he picked on someone he would be pulled into the office and he always felt he should have the same options as all the other kids--his last 3 yrs of school were so difficult--he failed 8th grade science 3 times--he needed the test read to him, he has reading disabilities--they wouldnt let me read them to him, nor did they ever do it after they stated they would--it has been very difficult--he still has so many emotional problems and i know he loves me and he knows i was always there for him, but to this day i am his target for anger, probably because heknows no matter how he hurts me, i will always love him and i will--he does test me-----keep your chin up--deb