Celiac Resources for Kids:
Raising Our Celiac Kids or R.O.C.K.
Of Special Interest if Your Child Has Been Diagnosed with Celiac Disease or Non-Celiac Gluten Sensitivity: |
|
If your child or teen have been newly diagnosed with celiac disease, you might find these resources helpful:
1. From Boston Children's Hospital's Celiac Program (a Harvard Medical School Hospital) :
a. Videos for Parents and Children (designed for those more newly diagnosed). Videos offered from Boston Children's include mini-episodes on "Raising Your Celiac Child" and "Gluten-Free at College"
b. "Amy Goes Gluten-Free" magazine for children from Boston Children's Hospital - We received several copies of this we can give you at a support meeting, or you could likely request one from Boston Children's Hospital.
c. Get access to approximately 80 New Videos for Older Children and Teens (by older children, teens, and dietitians). The program was produced through Boston Children's Hospital. For those who are not patients there, there is a $35/year membership fee. To find out more, contact: celiac.kids.realtalk@childrens.harvard.edu
c. NEW as of Aug. 2019: Pediatric Celiac Dietitian Rosio Hernandez (Rady Children's Hospital) goes over gluten-free label reading with our San Diego Raising Our Celiac Kids group (part of our non-profit National Celiac Association San Diego)
d. NEW!!! Resources to use to empower your child in school (& why a 504 plan is a good idea):
1. From Boston Children's Hospital's Celiac Program (a Harvard Medical School Hospital) :
a. Videos for Parents and Children (designed for those more newly diagnosed). Videos offered from Boston Children's include mini-episodes on "Raising Your Celiac Child" and "Gluten-Free at College"
b. "Amy Goes Gluten-Free" magazine for children from Boston Children's Hospital - We received several copies of this we can give you at a support meeting, or you could likely request one from Boston Children's Hospital.
c. Get access to approximately 80 New Videos for Older Children and Teens (by older children, teens, and dietitians). The program was produced through Boston Children's Hospital. For those who are not patients there, there is a $35/year membership fee. To find out more, contact: celiac.kids.realtalk@childrens.harvard.edu
c. NEW as of Aug. 2019: Pediatric Celiac Dietitian Rosio Hernandez (Rady Children's Hospital) goes over gluten-free label reading with our San Diego Raising Our Celiac Kids group (part of our non-profit National Celiac Association San Diego)
d. NEW!!! Resources to use to empower your child in school (& why a 504 plan is a good idea):
- Steps to a 504 Plan (by Katarina Mollo, RD with the National Celiac Association in Boston)
- How to Create a 504 Plan for Your Child with Celiac - Handout Created by Dietitian EA Stewart from Raising Our Celiac Kids get together on 5/19/19
- Parents have to learn to advocate for their child with celiac disease and teach their child to advocate for themselves. Start by learning your child's rights related to their celiac disease disability in public schools. To initiate the process, a parent must generally request a 504 plan team meeting in writing to the school's counselor or principal. Creating a 504 plan is often a very smooth process, but we've included tips below based on our experience that will be helpful if you run into a lot of pushback.
- It can be helpful to request that the district dietitian attend the 504 meeting. Sometimes they are familiar with celiac disease and sometimes they are not, but educating them about it and requesting as part of the 504 plan that they in turn educate the staff who interact with your child has been very useful in our parents' experience.
- If your child with celiac disease is in a public school, a 504 plan is likely one of the best ways legally to set your child up for a Free Appropriate Public Education (FAPE). It can significantly improve their quality of life, decrease their risk for cross contact, and lead to less incidents where they are tempted to fit in and "cheat" on the diet. You are likely also blazing the path for many other students with celiac as you educate the school staff about celiac-safe practices.
- The plan rolls over from year to year and helps consistently inform a changing array of teachers and substitutes who often don't understand much about celiac disease or cross contact. A 504 plan entitles your child/family to procedural safeguards and helps protect your child from discrimination because of their disability or retaliation in the case of a complaint. It's really not that difficult to establish. Also, your child is not required to participate in any of the meetings about their disability and 504 plan if you prefer that (one of our educational advocates usually recommends children not participate if there are concerns establishing this would be contentious with the school administration).
- We highly suggest parents read the Dept. of Education's handbook for step by step guidance and FAQ:
- Note on page 3 of this resource guide, to qualify for a 504 plan "an individual with a disability (also referred to as a student with a disability in the elementary and secondary education context) is defined as a person who: (1) has a physical or mental impairment that substantially limits a major life activity; (2) has a record of such an impairment; or (3) is regarded as having such an impairment.7 The determination of whether a student has a physical or mental impairment that substantially limits a major life activity (and therefore has a disability) must be made on a case by case basis.8 "
- Note on page 4 of this Dept. of Education Parent and Educator Resource Guide, that "major bodily functions are also major life activities under the law, and these major bodily functions include functions of the bowel, bladder, and brain; normal cell growth; and the immune, endocrine (for example, thyroid, pituitary, and pancreas), respiratory, reproductive, circulatory, digestive, and neurological systems."
- Teacher Handout: Do's and Don'ts in the Classroom (A Sample Aide for Teachers of Students with Celiac Disease)
- USDA's Guide for Accomodating Children with Disabilities in School Meal Programs (Guidance for School Food Service Professionals) - note especially pages 10, 11, and 12
"Specific guidelines for recipients operating public elementary or secondary schools are included at 7 CFR 15b.22. These recipients must provide a free appropriate public education to all children with disabilities within their jurisdiction, regardless of the nature or severity of a child’s disability. No additional fees, except those also imposed on the families of children without disabilities, may be imposed on the families of children with disabilities [7 CFR 15b.22(c) and 7 CFR 15b.26(d)]."
From the USDA's Guide for Accomodating Children with Disabilities in School Meal Programs
| DO's and DON'Ts in the Classroom (For Teachers and School Dietitians) |
We mention the two quotes below because in our support group, we have children with 504 plans for celiac disease, and in middle school and high school, the school administrations told parents our children no longer qualified for the 504 plans because "their grades were too good." This should never be a legitimate cause to end a 504 plan for a child with celiac disease. If this happens to you, or if the administration is not following your student's approved 504 plan, you may want to file a complaint with the Office of Civil Rights for your state. This is free and the school is prohibited from retaliating against you or your child for doing so. Alternatively, you may want to hire a certified educational advocate to help educate the school administration about the correct Department of Education Guidelines for 504 plans.
- Here is the link to file an Office of Civil Rights (OCR) complaint:
- Should the 504 plan creation or execution be especially problematic or contentious or if you feel your child's established 504 plan is not being followed, here is another tip. If OCR needs to get involved to push back on the school, they will want documentation of the school's lapse and your communications with them. OCR does not distinguish between your communication with the administration and with the teachers/staff in terms of you communicating with the school. In difficult situations, parents in our support group have been advised to consider communicating with school staff in writing only and in the more contentious cases, bringing a digital tape recorder to 504 plan meetings (let everyone know you're doing that at least 24 hours in advance). You can download a voice recorder for free or for a very low cost with most smartphones.
Page 5, U.S. Department of Education, Office for Civil Rights, Parent and Educator Resource
Guide to Section 504 in Public Elementary and Secondary Schools (December 2016).
Page 5, U.S. Department of Education, Office for Civil Rights, Parent and Educator Resource
Guide to Section 504 in Public Elementary and Secondary Schools (December 2016).
Another Avenue to Make School Safer for Kids With Celiac: District Wellness Plan
Your School District must have a Wellness Plan, as mandated by the FDA. That has standards for all foods and beverages provided, but not sold, to students during the school day (e.g., in classroom parties, classroom snacks brought by parents, or other foods given as incentives). Wellness plans following federal guidelines may eliminate "junk food parties" in the classroom. They are renewed every 3 years and parents can request to be on the Wellness Plan committees for a school district.
More About Managing Celiac Disease or Non-Celiac Gluten Sensitivity in San Diego Public Schools
Your child is entitled to be educated free from discrimination, and to receive a Free and Appropriate Public Education (FAPE) under the law at public and charter schools. They are entitled to privacy about their disability if that is your preference. And importantly, they are likely to be entitled to have a 504 plan at school, with the ongoing accommodations and protections that provides.
A 504 plan provides some legal accountability with the school for your student ensuring accomodations for your child are consistently followed, even when teachers change, administrators change, or substitute teachers are brought in and misunderstandings are more likely to occur. Though slight modifications may be made every few years, a formal 504 plan can follow your child throughout elementary, middle, and high school and can be forwarded to public colleges to continue to ensure their changing needs are met.
Unfortunately, sometimes well-meaning school staff do not understand celiac disease or non-celiac gluten sensitivity at all and do not realize the ways in which they may inadvertently discriminate against your child at school or put your child's health and learning at risk. In middle school and high school, there is more peer pressure to fit in, and teens are notoriously more likely to be tempted to cheat on their medically necessary gluten-free diet when everyone else in the class is eating their "S'mores plate tectonics science experiment" and there is no comparable treat for your child.
To initiate the 504 process in school, a parent first needs to formally request a 504 plan be established for your child from your school counselor or principal. There is no legal help required to initiate a 504 plan through your public school for your child, but if you feel you need help or you feel your child's school may not be fairly considering your child's needs, board certified educational advocates are available (at an hourly rate) to provide a little or a lot of help. The Department of Education's Office of Civil Rights (OCR) also provides guidance to parents and schools and follows up on complaints when a school is believed to not be following the law or established 504 plan complaint procedures.
Within our San Diego celiac support group, we have seen several instances where an educational advocate has been very helpful to the 504 plan process. We also have children in our support group attending schools who were frequently not following their child's 504 plan. After trying to resolve the issue with the teachers and school administration failed, parents filed complaints with the Office of Civil Rights, and then saw the situation completely improve or resolve when the California OCR educated the school administration on the student's legal rights. Our support group has sometimes in the past been also been brought in as an advocate to provide general education to school districts, school nurses, and dietitians about managing celiac disease.
Here is the Office of Civil Right's publication to help with understanding the proper way to implement a 504 plan in public schools:
Parent and Educator Resource Guide to Section 504 in Public Elementary and Secondary Schools www2.ed.gov/about/offices/list/ocr/docs/504-resource-guide-201612.pdf
A 504 plan provides some legal accountability with the school for your student ensuring accomodations for your child are consistently followed, even when teachers change, administrators change, or substitute teachers are brought in and misunderstandings are more likely to occur. Though slight modifications may be made every few years, a formal 504 plan can follow your child throughout elementary, middle, and high school and can be forwarded to public colleges to continue to ensure their changing needs are met.
Unfortunately, sometimes well-meaning school staff do not understand celiac disease or non-celiac gluten sensitivity at all and do not realize the ways in which they may inadvertently discriminate against your child at school or put your child's health and learning at risk. In middle school and high school, there is more peer pressure to fit in, and teens are notoriously more likely to be tempted to cheat on their medically necessary gluten-free diet when everyone else in the class is eating their "S'mores plate tectonics science experiment" and there is no comparable treat for your child.
To initiate the 504 process in school, a parent first needs to formally request a 504 plan be established for your child from your school counselor or principal. There is no legal help required to initiate a 504 plan through your public school for your child, but if you feel you need help or you feel your child's school may not be fairly considering your child's needs, board certified educational advocates are available (at an hourly rate) to provide a little or a lot of help. The Department of Education's Office of Civil Rights (OCR) also provides guidance to parents and schools and follows up on complaints when a school is believed to not be following the law or established 504 plan complaint procedures.
Within our San Diego celiac support group, we have seen several instances where an educational advocate has been very helpful to the 504 plan process. We also have children in our support group attending schools who were frequently not following their child's 504 plan. After trying to resolve the issue with the teachers and school administration failed, parents filed complaints with the Office of Civil Rights, and then saw the situation completely improve or resolve when the California OCR educated the school administration on the student's legal rights. Our support group has sometimes in the past been also been brought in as an advocate to provide general education to school districts, school nurses, and dietitians about managing celiac disease.
Here is the Office of Civil Right's publication to help with understanding the proper way to implement a 504 plan in public schools:
Parent and Educator Resource Guide to Section 504 in Public Elementary and Secondary Schools www2.ed.gov/about/offices/list/ocr/docs/504-resource-guide-201612.pdf
"Never fail to take appropriate action to ensure that a student with Celiac Disease receives the protections of Section 504 to which they are entitled under Federal Law. Many students with Celiac Disease experience challenges in the educational setting and are denied a Free Appropriate Public Education (FAPE). Celiac Disease rises to the level of a disability because this physical impairment substantially limits one or more of the expanded list of non exhaustive major life activities including eating, thinking, concentrating, and the major bodily function of digestion.
-Maureen Dempsey, Board Certified Educational Advocate with North County Educational Advocates, Serving Southern California
Board Certified Educational Advocate (BCEA)
Fellow National Special Education Advocacy Institute
Court Appointed Special Advocate
B.A., B.A.Ed.,M.A.,R.C.A, Ed.S, Ed.S Honors
2. Watch this short video produced and recorded by our celiac support group with nationally renowned celiac dietitian and author Melinda Dennis, MS, RDN, who give kids tips on a celiac-safe gluten-free diet:
The Celiac Support Association Presents Celiac Dietitian Melinda Dennis’ Kids Chat
- This video Includes healthy gluten-free snacks, quizzes for kids on a gluten-free diet, tips to get a celiac-safe gluten-free pizza at a restaurant, ideas for what to say to other kids who ask why you can't eat gluten
3. See Beyond Celiac's Getting Started Guide for those with Celiac Disease and Non-celiac gluten sensitivity - includes 504 plan guidance and lunch/snack ideas. BeyondCeliac.com also put together a very useful Q&A with a pediatric gastroenterologist at the Center for Celiac Disease at The Children's Hospital of Philadelphia (CHOP) to answer questions about children and teens with celiac disease. Also, see their new video on how celiac disease works if you're interested.
4. We have some San Diego specific resources for you also:
The Celiac Support Association Presents Celiac Dietitian Melinda Dennis’ Kids Chat
- This video Includes healthy gluten-free snacks, quizzes for kids on a gluten-free diet, tips to get a celiac-safe gluten-free pizza at a restaurant, ideas for what to say to other kids who ask why you can't eat gluten
3. See Beyond Celiac's Getting Started Guide for those with Celiac Disease and Non-celiac gluten sensitivity - includes 504 plan guidance and lunch/snack ideas. BeyondCeliac.com also put together a very useful Q&A with a pediatric gastroenterologist at the Center for Celiac Disease at The Children's Hospital of Philadelphia (CHOP) to answer questions about children and teens with celiac disease. Also, see their new video on how celiac disease works if you're interested.
4. We have some San Diego specific resources for you also:
- If you're a parent of a child with celiac disease or non-celiac gluten sensitivity and are having a hard time getting your child's 504 plan established, our support group can give you references to contacts who have helped other members in the past. If you'd like those references or would like to take a more active role for children in the area please contact Michele Vargas.
- Contact Michele Vargas and we can setup a get together within a couple of weeks near your part of town with other families whose children have celiac disease or gluten-related disorders. We also have other parents you can connect with that are in town. Children, teens, and parents are always welcome at our support meetings, and sometimes we have special events and activities just for the kids.
Educational Video for Kids with Celiac or Gluten Sensitivity"
The Celiac Support Association Presents Celiac Dietitian Melinda Dennis’ Kids Chat (March 2015)
- Includes healthy gluten-free snacks, quizzes for kids on a gluten-free diet, tips to get a celiac-safe gluten-free pizza at a restaurant, ideas for what to say to other kids who ask why you can't eat gluten
Gluten-Free Packaged Product Tips
For school age kids, pizza parties are common, but most pizza places in San Diego are not adept at preparing celiac safe gluten-free pizzas. Some of our families buy pizza boxes like this from amazon or bags to keep their pizza warm in. Make the pizza at home and bring it with you. It will look store-bought yet will be safe and they will fit right in.
Bring homemade gluten-free cross-contamination free pizza in a pizza box to pizza parties!
