Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dealing With Schools


ryebaby0

Recommended Posts

ryebaby0 Enthusiast

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ridgewalker Contributor

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.

rick-spiff Rookie

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

Open Original Shared Link national center for learning disabilities (has parent guide about IDEA, IEP & 504)

Open Original Shared Link national disability rights network

Open Original Shared Link 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

HAK1031 Enthusiast

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!

cruelshoes Enthusiast

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: Open Original Shared Link

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.

Darn210 Enthusiast

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

    2. - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    4. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,349
    • Most Online (within 30 mins)
      7,748

    Sarah S
    Newest Member
    Sarah S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.