By Reach Beyond Celiac Ambassador Rochelle Siezega
Having a gluten-free child in school can be stressful and challenging. In honor of the upcoming back to school season, I want to share some tips that I recently acquired as a parent of a young child with celiac disease.
Every school administration is highly variable in terms of knowledge about celiac disease; however, there are several things you can do to ensure the success, safety, and happiness of your child for the school year.
There are two different, but important plans to be aware of. One of those plans is an Individualized Healthcare Plan (IHP), and the other is a 504 plan. Your child can have one or both plans.
An IHP is a medical document that describes your child’s basic needs and outlines how those needs will be addressed. All children with celiac disease should have an IHP at minimum.
An IHP is usually obtained by contacting the school nurse. You will be asked to provide documentation from your pediatrician or gastroenterologist regarding diagnosis, restrictions, and recommendations for care if gluten exposure occurs. The school nurse will go over the details of the plan with you, and then ask for your review and approval of the plan.
A 504 plan is a legally-binding agreement that is part of the Americans with Disabilities Act (ADA). Celiac disease qualifies for a 504 plan. A 504 plan can be carried with the child throughout the college years.
Opinions on 504 plans are variable, as not everyone with celiac disease must have one, but the 504 plan provides additional protection for your child. A 504 plan is customized to your child’s needs, but often times encompasses social and emotional aspects of school as well. Beyond Celiac has great resources on 504 plans.
To request a 504 plan, you need a written letter formally asking the school for this type of plan. The school will evaluate your request and arrange a meeting to discuss the details.
If the school is not responsive, be persistent and always document conversations in writing. You are advocating for your child’s rights to learn in an environment that will not hinder them, so do not be afraid to be clear in the needs of your child. Ask questions until you and your child are comfortable.
I recommend starting early to guarantee essentials for your child. Many schools begin to coordinate these documents in late spring and early summer. Reach out to the school to request a meeting. Often times, the school nurse and the director of special programs are who to contact. You know your child better than anyone, so do your research and make a list of necessary accommodations and reasonable expectations for your child prior to the meeting.
Just prior to the start of the school year, contact your child’s teachers (if they do not reach out to you first!) to go over your IHP and/or 504 plan. Discuss how parties, special events, and possible cross contact in the classroom will be handled.
After we had some struggles, I ultimately presented a PowerPoint on celiac disease to our child’s teachers, which included examples of gluten-free snacks and examples of supplies that may be a risk for an elementary school aged child, such as Play-Doh and macaroni necklaces. I emphasized the importance of cleaning tables and washing hands prior to eating to limit cross contact as much as possible.
An obvious big challenge is having your child feel left out of events. However, social events are an important part of development, and I strive to ensure my child is included in regular activities as much as possible. I have realized that frequent communication is the key to achieving that success.
I asked my child’s school about communicating with other parents in the class on this topic. The school preferred that they provided a generic letter about class allergies and dietary restrictions, but I did request for three recommendations to be included:
This system, for the most part, has kept my son happier and safe. Unfortunately, we did encounter occasions when this system did fail, such as times when our child would rather have the birthday treat that the other kids had, but continually educating our child on the importance of maintaining a gluten-free lifestyle has really helped his understanding. We encourage him to be proactive in checking labels prior to eating snacks. He is unable to read at his age but can recognize “GF” or “gluten-free” on a label. By educating him on his disease, our child has now acquired the confidence to tell other kids that he is gluten-free and keep himself healthy.
Celiac disease has a huge impact on all areas of life. School is one area that remains difficult for children to navigate, but with some advocacy, education and open communication, your child can be successful in school.
I’ve realized that although teachers care so much about our kids, celiac disease is often an unfamiliar situation. Some days will still be hard, but know you are not alone, and you are doing a great job guiding your child through this.