Article: Westport Student Files Lawsuit

[angel-jd1]

Mariann-

I would consider eating to be part of sustaining life. I wouldn't see why it wouldn't be on the list, possibly just got "left off"? If it really doesn't qualify then you are right, needs to be supported by some major celiac organizations to help these kids get what they need!!

Valerie-

Most colleges that I have heard of seem to be pretty cooperative (after some prodding) when it comes to celiac. You really should(if you haven't already) make a appointment with the school dietician, head of the food program, disabilities director, and the school president if possible. Sit down and talk about needs. Ask if maybe they would give your daughter some freezer space, her own toaster (or at least a safe place to leave one), just simple things so that she could have some of her foods. Don't forget that we are covered by the Americans with Disabilities Act. You might want to also bring that up.

I'm not sure what school food service the college has but I have written to sodhox and they seem to be a wonderful and cooperative group. They serve colleges all around the US.

-Jessica

[brdbntL]

Valerie,

My children are small, so I don't know that much about protection at the college level, but my brother works at a cafeteria at a college in Texas. Actually he plans menus and all sorts of things. When I found out about my daughter, I was asking him questions about how he could/would deal with it if someone came to him with that sort of limitation. He told me that it would be very very hard to have a gluten free meal prepared everyday seperatly for that person. He did tell me that he would/ could take the time to go through with the person and tell them what to avoid- hidden sources of gluten in their kitchen, what is gluten free and try not to add flour to every sauce if it didn't need it. ( He thought of this after listening to me gripe about some of the products on the shelf that add malt and don't really need it, like Rice Krispies). So I guess I am suggesting that if you don't get off campus housing to visit the chef/ head cook/ manager of the cafeteria and see if they are willing to cooperate. Maybe they can even give you some fridge/freezer space.

I hope you and your daughter prevail with the off campus housing that would be much easier, but what about a dorm fridge and a George Foreman like grill, maybe even a toaster oven, or microwave. I don't know dorm rules and small appliances, but if they won't let her live off campus maybe they will make an exception and let her have some small appliances.

Mariann,

It sounds like you are doing a great job working with the school. We will have a 504 plan next year,my daughter is also type 1, when my daughter goes to Kindergarden, but I am planning on doing all the things that you have listed. I have already spoken with the nurse and she has given me some ideas on how to communicate with the teachers and classmates parents. I plan on going to the teachers, having speacial snacks for my daughter, etc. But I wanted to thank you I hadn't even thought of the macaroni projects they do. I'll have to keep that in mind. That is a great idea. Thanks for sharing it. What about Fruit Loop projects, have you found a sub gluten free cereal for that?

The problem I am having is filling out the "allergy" paperwork that they want me to fill out. It is more for immediate allergic reactions, like those in need of an epi-pen or some form of immediate assistance. I don't want the school to think that it is ok for her to get gluten because she doesn't have a reaction that they can see. I know, most of the time, if she has had gluten because her blood sugars go all crazy on me for a day or two, but that isn't something that can be easily explained on a form. And I don't want to panic anyone at school about her blood glucose that is going to be enough of a worry for someone who has never dealt with it. We have two more Endo appts before school so maybe they can help me, but if anyone else has filled out this paperwork and has pointers I would appreciate it.

Thanks, Laura

[gf4life]

I haven't had any issues with Fruit Loops or Cheerios. If they are doing a "counting" project, they find something else to count with. I did buy some Amaranth-O's, which can be used for stringing if they need them. So far they haven't done anything like that. The Amaranth-O's taste like dirt to me and my kids won't eat them either, but I keep them in our pantry just in case we need them for projects...

My children's teachers have been cooperative in substituting ingredients. Actually they were going to use Fruit Loops once to decorate an owl project. They would have been the "feathers". I suggested they use Fruity Pebbles instead, and I even bought the box of them. They worked even better, since they looked more like feathers. The teacher loved the idea and my daughter could do the project, too.

The trick is being flexible and working closely with the teacher to help them. I don't want to burden any of the teachers. They have their plates overflowing anyhow. They don't need some troublesome parent causing problems. They want the children safe also, so most are willing to cooperate. I don't mind supplying a lot of things, if it means my daughter doesn't have to worry about it. It is easier in the older kids classes. They don't do so many food related things. Next year we get to test out the waters in the Middle School. That is my next area of education. I don't expect problems, but I am ready for them.

God bless,

Mariann

[dreamhouses]

Thanks everyone for the notes on my daughters college cooking dilema, and good ideas about the food service people. I'll keep you posted on what they say, and I'm going to go check for information on the Americans with Disabilities Act. - I didn't even know we were covered in that!

Re: the younger kids (I have a 6th grader too)...does anyone think it would be helpful, or possible, for teachers to sort of group some of the kids together at lunch who have diet issues? It seems like it might help them avoid some of the ruthless teasing that goes on about lunches. Children are so cruel about what other kids eat!! Even when my daughter has eaten so called "normal" food, (she's not gluten-free, but I've had her on a couple diets for other reasons off and on) - they will just taunt if you bring anything "natural" and "healthy". ie not a luchable, or highly packaged and advertised product. It seems to be an inevitable part of childrens behavior. Anyway, does it seem like it could help to group a few kids together in a discreet way? Particularly in grade school that might work- as other kids might not think much of it and the ones with allergies, gluten-free, or just plain granola munching moms like me, could get a little break. Are any of you teachers who would know if that would work? Just food for thought, Valerie

[gf4life]

does anyone think it would be helpful, or possible, for teachers to sort of group some of the kids together at lunch who have diet issues? It seems like it might help them avoid some of the ruthless teasing that goes on about lunches.

I don't know if that would work. But every school is different, and they have to do what works best for them. At our schools the kids sit with their class in a designated area for the younger grades (k-5) and if the food allergy/intolerance children were in different classes this might be a logistical nightmare for the cafeteria staff! Also kids have friends in their classrooms that they like to sit with. Chances are that they might get teased more if they were being segregated because of their food issues.

From personal experience my kids have not been teased for their food choices at lunch, but then I don't send weird stuff in their lunches. Lunch is usually a drink, a fruit cup or apple, a lays chip choice or gluten-free pretzels, a fruit snack, and either gluten-free beef jerky or some sliced lunch meat. They also usually care a gluten-free protein bar in case they are still hungry. So it isn't really a strange selection of food. The other kids actually drool over my sons lunch at the 5th grade! Also most their close friends have eaten at our house and some of them like the gluten and dairy free foods better than regular gluten food... So that makes my kids feel sort of special, rather than left out! This has helped my 5th grader immensely with his struggle to accept being gluten-free.

Now I don't know yet how it will work in Middle School, but I am assuming they still have to stay with their own class during lunch. And here in my town, they don't have a cafeteria for the High School, the majority of the kids leave campus and walk a few blocks to the Taco Bell, McD's and Pizza places to get lunch. Some do bring a sack lunch and sit in the quad with their friends and eat. I'm not sure what they do when it rains, but I guess they might have an indoor room for them to eat in?! I'll find out in a few years.

Mariann-

I would consider eating to be part of sustaining life. I wouldn't see why it wouldn't be on the list, possibly just got "left off"? If it really doesn't qualify then you are right, needs to be supported by some major celiac organizations to help these kids get what they need!!

Jessica, I totally agree with you! I just worry that it leaves it open to interpretation and if you get an inflexible group of people who don't feel it is necessary, they could deny the student participation in the 504 program. I just feel like it should be more concrete in the wording in order to protect the kids who need it. This might be one of the reasons that the child in the article was denied the 504 when the school reviewed it, but I also feel there was some retaliation going on against the dad, and the child was caught in the middle...

God bless,

Mariann

[minivanmama0300]

Jessica,

I don't know if you remember me, I am in your town and was on silly yaks until I forgot my password, lol. I have a 2 year old dd, and made it to the support meeting last week!!

Since you are familiar with our school district (I assume, you said something about being a teacher) What will I need when my dd goes to school? We have chosen to go thru Enterolab first, since we are on a long wait at the PED GI anyway. And after talking to some of the other parents in the support group, I think I would rather stick to our enterolab result should it be positive. Will my dd be able to get a 504 should she need it? Would it depend on if my doc will "accept" the results from enterolab?

Thanks

Jess

[angel-jd1]

Jess-

You said it correctly "IF" the dr accepts the enterolab diagnosis. Otherwise you won't be getting a 504.

Hummmm lost your password, maybe you can hit that "forgot my password" link and it will send it to ya, we miss ya on the site.

I can't make it to the meetings because I work on Thurs when they have decided to have them. Oh well, I get pleanty of support on here and on USA Silly Yaks

-Jessica

[minivanmama0300]

Thanks Jessica. That gives me something else to think about in this process. I hope maybe the test will come back positive enough that they will not get hung up with a negitive blood test. That is my big worry with her young age, that a blood test will be a false negitive.

I do read silly yaks, I promise to get back on soon! Sorry that you can't make the meetings. There were very few members last week, but it was still a good resource.

Jess

[Deby]

I just caught back up to this thread since I hadn't read it in a while. I have to empathize with all the troubles associated with celiac disease. College really is a tough issue, I agree. However, I still believe that children with celiac disease need to learn to cope with the illness, especially as they are older. Schools are for EDUCATION. Schools cannot be everything to everyone as they have regrettably become.

I also react strongly to lawsuits. This whole thing sounds like "you hurt me, so I'm going to hurt you." The parents criticized the principal, the principal, being immature, cut the 504, the parents sued. How juvinile. If this is the level of the adults in this case, yes, get the 504. Personally, I feel sorry for the child in this case as it seems her parents will not be able to properly prepare her for life as an adult (something I see as the primary job of parents, and not the school, whose job it is to educate the child so that he or she can be literate and contribute to society.)

I'm curious how much these parents are suing for.

I don't believe schoos waste money. My children's elementary school has one case worker, who is also the vice principal. She always seems harried and overworked. She never seems to have time to visit with parents and just be personable. I would imagine that the shcool needs to hire a sererate case manager but there is not funding for that. They did just hire another Read to Achieve teacher. None of my children are using that reading service, but for those who do need it, it's fantastic. That's where the money ought to be spent, IMO.

[lcmcafee2]

Here is another thought about the 504.

It seems like all of the folks that are on this site and post are good parents/educators that are willing to take the time to educate themselves, their children and others about the disease their child has. What about parents that do not have the mental ability to do that?

Our son was diagnosed as Developmentally Delayed and I found it was a continual educating process to keep up will all the needs he had and legislation that provided the resources or education he needed. I am seeing this 504 as a RESOURCE for parents that are new to the celiac disease diagnosis of their child. Perhaps the teacher has/had another student that has celiac disease. Maybe she/he can HELP the parents with the process by sharing her knowledge. I am NOT saying that is a responsibility of the teachers .... just a possible sharing of her/his previous experience or knowledge. Or maybe it is an oportunity to add education for the teacher. All the teachers we delt with were very open to us sharing our suggestions, it helps them be better teachers. (We have three teachers in the family)

I have celiac disease Diag. Nov. 2004) and suspect that my son (now 25) has it. His doctor won't order the blood test (State Medical Card) While he was married, to another individual that was Developmentally Delayed, they had 2 children 10 months apart. Needless to say they could not raise them and we now have custody of them. They are ages 3&4. I suspect the 3 year old has celiac disease. To date her doctor has put her on a can of Pedisure a day for the last year (little or no weight gain/growth)

IF the kids would have still been in custody of their parents neither of them (parents) would have the ability to "self educate" themselves about the disease. Or the ability and disipline to follow the diets that are required.

The children of the folks that post here are Blessed! They have parents that are willing to go the extra mile to make their lives safe and secure. The are good parents. There ARE parents who would just not take the time (or have the mental ability) to notice their child's symptoms, educate themselves about the disease and then try to help their child.

HOWEVER, I do not think much of the law suit the parents in the article have pending. The School Board and Superintendants positions are elected positions and that is where the parents should have started. In my opinion.

Well that is my two cents ........... for what it is worth.

Laura

[Deby]

Laura, you are doing a great deed taking care of your grandchildren. Are you saying in your post that your doctor won't test them for celiac disease? My boys had a peditrition who refused to test. We notified our insurance provider and switched doctors.

I've been giving a lot of thought to this 504 discussion/ I posted earlier that I had misunderstood the position of the 504 since my daughter (who is disabled because of psychosis and learning disabilities) had a 504 plan set up as the last step the school took to try to help her succeed in public school. I mistook that to believe that a 504 was a much larger intervention that it turns out to be.

I still feel that parents should try to communicate without a 504 since I still believe that communication is possible without any extra measures in place. I would only go for a 504 if the school is unwilling to make any reasonable effort to help my child stay gluten-free.

My son's school has been very accomodating. However, they would not microwave food for my sons. I offered to buy a microwave for the classroom, but was told that microwaves are not allowed in classrooms. That seemed reasonable. So I pack them a cold lunch every school day. I know I could demand a hot lunch but I just didn't feel the need to go there. I feel there is more benifit to keeping relations between my family and the school peaceful than there is to my sons having an occasional hot lunch.

I have to admit that the parent's filing a law suit truned me 100% against them right off. My parent's suffered a frivolous law suit and since then I am even more angered by people suing unnecessarily.

[Guest ajlauer]

I had a hard time with my son's school a few years ago, in regards to his AD

HD. His doctor suggested a 504. When I mentioned it to the school - you'd have thought I was hreatening to sue!!! It was like they went into a panic/recovery mode. Anyone know if 504s reflect negativly on a school?? I was under the impression it was a "last resort". Sort of like an arbitration agreement or something.

[lcmcafee2]

Monica,

The doctor has no idea yet that I feel our 3 year old granddaughter had celiac disease. We are just now getting a concept of how broad the brush is with Celiac Disease! It has only been 5 months since we even heard of it and I am in the process of documenting her symptoms. She sees a nutritionist on the 14th of this month and I am going to start there. (The kids receive milk/cereal through WIC) We have the kids on our insurance so there will be no problem following through with her symptoms.

The doctor that won't order the test is her dad's doctor. Because our son has a hard time with communication, I went with him to the doctor's. I wanted to explain to him that I was diagnosed with celiac disease and wanted to tell them his symptoms, to see if he would order the blood work for him. We have been going to this doctor's office for years so they know the family and history. (I changed FROM them to another doctor and that is when the celiac disease was found.) I just started when the doctor looked at me, rolled his eyes and said .... he doesn't have that .... and that was the end of that! Since my son is 25 and an adult it is up to him to decide from there where to go. Though I will encourage him to find out somehow if he has it. He is on the State Medical Card and the list of doctor's to go to is limited.

Blessing,

Laura

[Deby]

I was under the impression it was a "last resort". Sort of like an arbitration agreement or something.

I was under this assumption too. I don't think that is the case, but certainly it seems that some schools react that way. When I brought up a 504 for my boys celiac management, the vice principal was uptight. It was clear from her body language that she didn't want to go there. Since I don't have any difficulties with my boys getting contaminated in school, I didn't press.

Laura,

Yes, my son's doctor denied the accuracy of a celiac disease dx even after a pos. biopsy. He is no longer the boys doctor.

I feel for your desire to help your son understand celiac disease and through that, your grandchild. My mother has all of the celiac disease symptoms, including pollups and bone loss. She is scheduled to have hip replacement later this month. She won't go gluten-free. It's frustrating.

[connole1056]

I do think it seems odd the parents in questioned sued, but the article was not clear about why. Was the earlier start time in relation to the suit? And what does that have to do with celiac disease anyway?

I am fed up with my daughter's school, so I can see why some people would sue. My daughter was told to bring in her own food for consumer science class! That is completely wrong. The vice principal reacted so horribly when we asked about a 504 plan in the beginning of the school year that we let him get away with an Individual Health Plan. Well, that is changing soon. I have contacted the Department of Education in my state because my daughter has been continually excluded from activities because of her disease. We live in a small, but wealthy, community yet my daughters teacher said- to an 11 year old-that she could not supply her with gluten-free food because of her "very limited" budget. I have previously sent my daughter to a private school, where the entire faculty was much better about contacting me about celiac disease.It is strange because the budget the private school deals with is very small, but they were able to make better accomodations. I pay state and federal taxes and will not be told that budget constraints are keeping my daughter from the same education as a person without celiac disease. Incidentally, my husband is very familiar with 504 plans, since he is a principal himself, and celiac disease does qualify for a 504 plan.

It has nothing to do with LAZY parents. It has to do with equality in education, by providing equal education to all students regardless of the student's disability. Disabilities are supposed to be addressed and met by the school staff and faculty, and no student is to be excluded because of a disability. Further, no matter what anyone's opinion is, the LAW has to be followed even if the parents are not the best. It is not about the parents after all-it's about the students!!!!

[Generic]

I am all for the 504. I was once a celiac disease child and had to watch my mom batlle with the school. Before I was diagnosed, I missed allot of school. They actually threatened to throw my parents into jail, since I had missed so much school. After the offical diagnosis, she still had to fight with them. She actually got a 504 or something similar (i'm not sure if it was, since it was 15+ years ago). It really opened up the comunnication lines. My parents worked full time to give my sister and I, a decent life. So they were not able to communicate as much as they would have liked to. But they did the best they could.

As for the celiac disease not being signifigant...are you crazy?!? Accidental ingestion of gluten to a celiac can actually cause anaphylactic shock (very rare but it can happen).

Also the comment of teaching your children, well yes of course educate them. But you all know from time to time we have at one point or another accidently been glutened. A child especially, wouldn't question their teacher, if they told them it was safe and it looked safe.

Just my 2 cents

[jknnej]

One of our guidance counselors and I were talking yesterday and she said the 504 is good for any child whose problem is not widely recognized or respected. For example, she said ADHD is NOT a protected class under the IEP laws. So, they do 504's while they are trying to get that changed. Celiac would also be good for this.

I am all for the 504 plan with celiac disease. It's one thing if a child has the kind of parents who make sure everything is kosher. But I've got kids who have IEP's even whose parents do not even check up or do what they say they will do.

[TawnyaK]

I work as a school psychologist in a middle school/junior high and have worked in preschool, elementary, and high school settings in the past. Food is pervasive in the school setting including middle school/junior high. It is used for incentives/rewards/prizes, instructional activities, and before high stakes testing. Although children and adolescents may be experts in their gluten-free diet, a Section 504 plan is very important for students with celiac disease even in middle school/junior high, high school, and at the university/college level. Reasons for a Section 504 plan may include, but are not limited, to the following:

1. To prevent from being glutened (This is particularly important when instruction requires flour containing gluten such as a cooking assignment or taking a family consumer science cooking class.) This also includes no sharing or trading foods during meal times or snack times.

2. To provide access to education when food is being used in instructional activities or for instructional purposes (so that the student is not excluded from participation in instruction).

3. To prevent social embarrassment when accidentally or inadvertently glutened, which can happen. One suggestion is to allow the student a bathroom pass as some teachers may refuse a student access to the bathroom if not medically necessary.

4. To maintain that the student requires a gluten-free diet even when the school is on lock-down.

5. To provide alternative rewards, prizes, and incentives that are not food related or are gluten-free.

6. To give the family advanced notice of the need to bring in gluten-free items (when the gluten-free snack box is not sufficient). This would be for special projects in the classroom involving food, field trips, class parties, and birthday parties.

7. To educate all school personnel interacting with the student (e.g., school nurse, all teachers including electives/specials teachers, guidance counselor, administration, extracurricular activities personnel, before/after school program personnel, cafeteria manager, cafeteria adult supervisors, etc.) This also includes educating substitutes as well as replacements (when school personnel change).

The Section 504 law has been revised or updated. Look on the US Department of Education website for the latest changes. Digestive system is included and eating is on the list. Even if in remission is included in the definition of disability. Mitigating or ameliorative measures (except for glasses, etc) cannot mean that the student does not have a disability if they do not display the disability while receiving accommodations or using an assistive technology device. This seems to me to mean that a person with celiac disease might qualify for a Section 504 plan because it is a physiological impairment of the digestive system that involves a life function of eating. If accommodations are already in place and the student is on a gluten-free diet, an ameliorative treatment, the student would still be considered for a Section 504 plan because without accommodations and a gluten-free diet, the student's learning would be negatively impaired. It is also important to not equate celiac disease with food allergies. Technically, celiac disease is not a food allergy and is classified instead as an autoimmune disease. It is not temporary but life-long with disastrous effects if accommodations are not strictly in place for the life of the person. The health plan is not sufficient in our opinion for a student with celiac disease, but is welcomed in addition to a Section 504 plan. A health plan identifies a child with a health condition and gives the what to do if the child is glutened; whereas a Section 504 plan helps to prevent being glutened and helps the child gain access to the instructional or educational environment without being socially embarrassed/excluded.

There are many accommodations that can be put into place. I am certain that all of you can think of many that you appreciate with your own children/adolescents. We believe that it is important to meet with our child's teacher BEFORE school begins, even if this means meeting in May before the August school year begins. This team meeting needs to occur every school year because as we found out the hard way, unless the parent initiates the transition meeting, it does not necessarily happen. Minimum team members include nurse, principal, classroom teacher, and cafeteria manager. If the child participates in before/after school programs operated by the school or school district, the actual coordinator at the school site who will be there daily at the program should attend the meeting. Ideally, we would also prefer all teachers including electives/specials teachers and adult supervisors, but this is not practical and would only probably happen if the parent worked in the school itself. We provide pictures of our child so that new school personnel (that is newly working with our child) can see a photo. This photo is labeled with our child's name, grade, age, and the date of the photo (as children change as they grow up). We also give the classroom teacher a copy of the Cecilia's Marketplace grocery store shopping guide (current edition) and books on celiac disease and the gluten-free diet. For all team members, we provide a handout that has our child's photo, diagnosis, what happens if glutened or with untreated celiac disease, and a chart of foods that are ok, might be ok (need verification), and are definitely not ok. We give all members brochures from the celiac association/society about celiac disease. We provide current diagnoses of celiac disease from the pediatric gastroenterologist and the pediatrician. We maintain frequent contact in person, email, and on the phone with our child's classroom teacher. We provide a snack box in the classroom. We investigate ahead of time any class parties, birthday parties, etc and ask ahead of time for what will be brought, etc so that we can provide an alternative gluten-free item for our child that is similar. We provide gluten-free food items for our child for class instructional purposes, etc. We interact with the PTA when giving food prizes to the class to provide gluten-free options. We go through the entire food list at the before/after school program and make a chart - ok, might be ok if verified (need more info), and definitely not ok. We give this food chart to the before/after school coordinator who is on-site daily. We educate the school nurse, teachers, cafeteria manager, and all school personnel we can meet and who work with our child. We investigate with the cafeteria manager for any gluten-free possibilities that might be available and we supply some gluten-free foods if they have chips that are gluten-free but no gluten-free cheese available. We volunteer to bring in food for any class party that they might have so that we can insure our child can fully participate with a gluten-free item. We label her lunch pail gluten-free with her address/name etc in a luggage tag that is closed (a confidential one that an adult can open up if the bag is lost). The lunch pail is unique in its color/decoration so that it is not confused with other lunch pails. This is not an exhaustive list, but should give some ideas of accommodations that can be done in the school setting.

We would be interested in other parents' experiences of a Section 504 plan in the school setting for celiac disease.