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ryebaby0

Dealing With Schools

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A new thread, for an old conversation. Let's keep this brief, when you can, so we don't grow old reading all the good input that's out there. Venting is another thread! (And who among us doesn't have venting to do!)

1. Does your child have a formal IEP, or 504 -- and BRIEFLY what accomodations have you asked for

2. If you have an informal arrangement in your school, was it initiated by you, or the school

3. Who did you contact when your child started school -- the teacher, the principal, or someone else?

4. Did your school already have policies that celiac fit into, or not?

Oh! And probably, add your child's age of dx and where they are in school now. Will that cover everything? Add what I've missed :)

Joanna

(whose answers follow:

1. No

2. By me, in August of each school year if we are changing schools (elem/middle/high school). We ask for access to a secure refrigerator and a staff member to heat up food as needed

3. Teacher first, cc food service and principal and student services(counselor); follow up with cafeteria managers and homeroom teachers

4. Yes (go to www.scasd.org and look for student services, food service, and special diet policies) but what we do is really outside that, arranged through food services for him as an individual. School policies discourage snacking in general, and some buildings are "nut free" (there's a joke there, isn't there?!)

My son was dx in 3rd grade, and is going into 9th. My husband is also celiac


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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Celiac.com Sponsor (A8):

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1. Does your child have a formal IEP, or 504 -- and BRIEFLY what accomodations have you asked for? No

2. If you have an informal arrangement in your school, was it initiated by you, or the school? Yes, by me.

3. Who did you contact when your child started school -- the teacher, the principal, or someone else? For Luke: Principal first, since I wanted him placed in a classroom close to a bathroom. Then his teachers, then the school nurse. For Ezra: Teachers. He's in preschool class that is housed in a daycare facility (complicated, but the facility director doesn't have much to do with the preschool classes.)

4. Did your school already have policies that celiac fit into, or not? Luke- not really. They kind of group him with the "allergy kids." However, the principle's brother is Celiac, so she is very understanding and is there as an advocate if we have issues. Ezra- No. I had to get a letter from the doctor just to be allowed to bring him in outside food. They allowed this without argument with the doctor's letter, and have a reminder sign up in the room that Ezra is not to have school food.

Oh! And probably, add your child's age of dx and where they are in school now. Will that cover everything? Add what I've missed smile.gif

Both kids were diagnosed by me, as Celiac runs in my family, and we had no insurance. Lucas was dx'ed just as he was finishing kindergarten. He began 1st grade in a new school, since we had moved. His school doesn't know he wasn't formally diagnosed, and no I don't feel at all guilty about that! :P His doctor's up to date on everything. He's now near the end of 1st grade. Ezra was dx'ed a few months into pre-K. He's now nearly finished that.


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Ok here goes....

My son has had an IEP for adhd, and I requested a 504 plan for the same but now that he has medical issues we are starting over. Here's what I found when I did research for the adhd.

Request a 504 plan in writing and sign and date, keep copy.

Request a group conference with principal, counselor, nurse, teacher, etc. To share your "action plan" Specific things you want implemented in the 504 plan. ( The 504 plan is special accomadations. If it is listed in the 504 plan the teachers and school HAVE TO follow what it states. If they do not, it is a serious no-no.)

Ask for a complete list of the kinds of resources the school has availible.

The school or district has a program: Has several names. School support team, or pupil support team, or students support team. They might be able to help mediate possiblly with the school.

You have the right to appeal any decision the school decides!!!

Don't feel that you have to settle fro what the school has to offer.

Some links. Our kids would qualify under a medical disability, or OHI other health impaired.

www.taalliance.org technical assistance alliance for parents

http://www.ncld.org/content/view/900/456084/ national center for learning disabilities (has parent guide about IDEA, IEP & 504)

http://www.napas.org/ national disability rights network

http://www.usdoj.gov/crt/ada/adahom1.htm americans with disabilities act home page

The links say for children with disabilities, and celiacs and gi kids qualify under the medical. You'll have to get a dr's note though.

The Rehabilitation Act of 1973 (Section 504)

Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications within the classroom.

That's why it's called a 504 plan.

Hope this helps! :D


Whole family is allergic to Gluten, eggs, dairy, most are allergic to garlic. Few other various allergies.

Did you know it's best to wait until 21 months to give a baby wheat??

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Well, I'm a high school student. But here's an idea of what you can look forward to:

1. Does your child have a formal IEP, or 504 -- and BRIEFLY what accomodations have you asked for

Nope, none of the above. No accomadations either. The only time it gets tricky is on trips,where I talk to the teacher in charge and explain that I will bring my own food or whatever.

2. If you have an informal arrangement in your school, was it initiated by you, or the school

Any arrangements I make are done by me, getting my parents involved if necessary.

3. Who did you contact when your child started school -- the teacher, the principal, or someone else?

NA

4. Did your school already have policies that celiac fit into, or not?

I would assume so, I know they have policies for other allergies, ie a nut free zone, and the whole building is latex free

Overall, I haven't found my celiac to be a problem in school. I bring my lunch all the time, and if I forget I buy an apple and chips or a salad or something. I don't see the need to buy lunch. Also in high school food rarely makes its way into the classroom, and if it does, I'm OK with refusing. I'm over feeling left out or upset. I just go home and have a gluten-free cookie and that makes everything better. Obviously we don't play with play doh either! The nurses know about my celiac, but when I went there with gluten pains once, they offered me crackers to settle my stomach :rolleyes: so at this point I'm just my own advocate. So, parents, look forward to when your kids are older!


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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1. Does your child have a formal IEP, or 504 -- and BRIEFLY what accomodations have you asked for

Yes. We asked for free access to the bathroom, advanced notice of class parties, the ability to keep a box of snacks in the classroon in case of impromptu food events, access to a refrigerator, advanced notice of cooking projects or art projects that involve gluten (paper mache, etc.) We are still working the kinks out of getting the advanced notice for birthday parties. The teacher doesn't always know when people are bringing things in. So far, my son is fine with eating treats from his box.

2. If you have an informal arrangement in your school, was it initiated by you, or the school

I initiated the contact.

3. Who did you contact when your child started school -- the teacher, the principal, or someone else?

I sent my request to the district special ed director with a CC to the teacher and principal. i asked that he be evaluated for special ed services under the Federal IDEA law. If you phrase it that way, they are required to act within 60 days. I was not looking for an IEP, only a 504, and that's what I got.

4. Did your school already have policies that celiac fit into, or not?

The school district says he is the first child with celiac they have ever dealt with. His needs did not fit into the peanut free protocol, or the beesting protocol, so we seem to be paving new ground. ;)

We also get a gluten free school lunch from the school district. We have to call ahead and order it, and it reguires a bit more work on everyone's part, but so far it is working out well. I have posted the menus and the steps we had to go through here: http://tinyurl.com/28j44e

My son is 9 and in third grade now, but he was diagnosed when he was 6 and in first grade. We didn't pursue the 504 until this year, but decided to go ahead with it to get it on record and try to prevent future issues.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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1. Does your child have a formal IEP, or 504 -- No.

2. If you have an informal arrangement in your school, was it initiated by you, or the school. Initiated by me . . . consists of access to bathroom as needed, emergency snack sack kept in teacher's closet, advance notification of any planned food activities.

3. Who did you contact when your child started school -- the teacher, the principal, or someone else? Took a copy of the doctor's note to the school nurse. Emailed a letter/info to the nurse and her teachers.

4. Did your school already have policies that celiac fit into, or not? Yes and No . . . not really a Celiac policy, but the informal policy for the allergy kids work for us. Normally, she just takes her lunch, but she does have access/use of the nurses refrigerator and microwave (the nurse will microwave anything for her). School has a "no birthday party" policy which I didn't realize would be such a relief to have.

Oh! And probably, add your child's age of dx and where they are in school now. Diagnosed in Kindergarten. Now in first grade.


Janet

Experience is what you get when you didn't get what you wanted.

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