In the southeast, we start school in August. Let’s talk about kids with celiac and school. Let’s work backwards from oldest to youngest.
For the kids were diagnosed very young, by the time they are in middle school, they should be pretty gluten savvy. Heck, my kids aren’t Celiac and sometimes remind me about mistakes I’m about to make. Kids should know what they can eat, how to read basic food labels, what precautions they need to take, how to stand up to the bullies, and in general, how to keep themselves safe. These are life lessons they will need for the foreseeable future, so they need to know.
Also, as a precaution, kids at this age will experiment. They will try gluten. It is inevitable. They will want to be like their friends. They will think that they have been safe and feeling good under your protection and do they really have celiac? They will want to fit in at the slumber party where everyone is eating pizza.
If all of a sudden they start appearing to have glutening symptoms, especially after they have been to a party or other event, as a parent, you have to step in. Being a teenager is hard enough. But by being a teenager with a food issue that is trendy right now being a teenager is made even worse. This is where you have to parent to help them through this time. Everyone has their own parenting style and I’m not going to tell you how to do this. Just know that your kid needs help navigating this time and you know how to help them. If not, get some professional help, but make sure you help them.
One more thing on this – it is not the world’s responsibility to keep them safe. Nobody is going to protect them. Nobody is going to provide a gluten free safe haven for them. They have to protect themselves. They have to know how to live in this gluten covered world safely. The sooner they learn this, I think the better off they will be.
For the newly diagnosed late elementary students and beyond, they have a steep learning curve. Adults have a steep learning curve on this and expecting a child to know how to handle it is unrealistic. There are lots of things to navigate socially, eating gluten free, advocating for yourself, etc.
I would start with a safe haven at home. Give them all the love and support they need. They might be sad and angry that they cannot be like their friends or eat the same foods they could before diagnosis. They might be grateful that they don’t feel bad anymore. They might be scared to eat out because of cross contamination. They will take their cues from you – if you take it in stride, they might too. Whatever they throw at you, be prepared. This is a HUGE change for adults and has to be more challenging for tweens and teens.
Also, be careful teaching them that the gluten covered world is dangerous. It isn’t. They can live and thrive while being gluten free. They can eat out – it just has to be modified. Anything can be accomplished with a little bit of smarts, a little bit of common sense, and a little bit of humor.
Bullying. Yes, your child will get made fun of and probably be teased. It is a fine line between bullying and normal childhood teasing. Bullying in my mind crosses the line when physical or emotional threats are made such as, “I’m gonna throw bread at you.” and then following through by throwing the bread. Adults make fun of other adults with celiac so, this is probably not limited to just school. Engaging with the school or other parents in this situation is probably your best bet. Also, education about celiac in the classroom might help as well.
For the early elementary school, this is a time when kids are pretty accepting of someone that is different. Other food allergies are common at this age. Children might notice someone is different, but if they are okay to play on the playground they are okay kids. Most schools have an “allergy” table in the lunch room where kids with anaphalaxis type reactions sit to eat their lunch. Asking that your child sit at this table won’t eliminate gluten being in the vicinity, but it is probably a smart choice.
Also, an IEP and/or 504 plans are vital for kids this age. The IEP and/or 504 will help give your child some additional support including – unlimited bathroom breaks, limiting or eliminating classroom snacks, and a method for handling the additional sick days that may be required. Here is the link to the Celiac Disease Foundations guide to 504 plans. Also, you will probably have to have a full celiac diagnosis from a doctor to engage the school in creating a 504 plan.
Lastly, the little ones with celiac – the preschoolers. Kids under 5 going to local preschool that is typically not public school, but at a church or daycare. This is tough because the little ones don’t understand cross contamination or even what gluten is. On this one, you have to engage the school and the teachers to keep your little one safe. Hand washing, gluten free snacks for snack time, communication about Play-doh and other craft supplies like macaroni art, and other things all have to be worked out. At this age, keeping the child safe has to be a collaborative effort between the school, teachers, and parents.
I don’t have celiac kids and never will. My sister does and helped me with this article. I hope it helps you all with the schools season coming up! Good luck and stay safe out there.