Assess Your Child's Situation
Every child is different, and knowing your child is one of the most important parts of managing Celiac. Age of diagnosis, ability to handle stress, and ability to follow detailed instructions are huge factors when deciding if a child with Celiac can manage on their own in a cross-contaminated environment. We let Wren start Sunday School and AWANAs on her own around age 5, but we pushed back Vacation Bible School until age six because there are more opportunities for issues since there are more snack times. We wanted to make sure she was confident where she was managing one snack time before pushing forward. Here's what we know about Wren that helped us make our decisions:
She was diagnosed at two, so she has always understood that she can't have gluten. It's been a part of her life as long as she can remember;
She's type-A and can follow detailed instructions IF she sees the benefit. Time with friends without mom and dad is a big benefit for her;
She does not process stress well at all. Her body actually started going into pretty major adrenal distress at one point because it was just all too much. In the process of helping her manage her own health, we also had to protect her from herself, sometimes completely stopping the process of teaching about cross-contamination so she could breathe, heal, and we could all just wait until she made it to a phase where she was more developmentally prepared to go on. This phase felt a lot like micromanaging our child's life, and that's kind of what it was. You do what you got to do. We still have to check in with her to assess how her nerves are holding up, even after all this time.
Once you are sure your child is ready to take on the responsibility of going on the gluten-free journey without you (and it's okay if they're not; one day they will be), move to step two.
Make Your Contacts
When I realized my Celiac girl and my gluten-intolerant kiddos would be going to VBS, I started contacting people. I messaged all the teachers I knew for sure would have the kids, the person in charge of art, the person in charge of snacks. I do this to ask questions and inform the individuals of the following:
My kids can't eat anything there, even it's labeled gluten-free;
My kids will need to have their food available anytime anyone else has a snack;
Do you use flour or Play-doh during art? What do you use, just in case I need to verify ingredients?
Everyone I have contacted has always been super cooperative, and I go ahead and give them the kids' names so they know who to look for. This year I didn't know who Wren's teacher would be, which leads to the next step.
Prepare Your Child to Advocate for Themselves
This is vital. Wren knows the whole drill, but she is used to having me there when she explains it to a teacher. I can fill in the holes and back her up. That wasn't the case Monday morning at VBS. I was helping with a bunch of toddlers while she was separated into her crew, meaning she met her crew leader alone.
The night before, we talked through the list. The list includes telling the teacher:
I have Celiac and cannot eat any food I didn't bring;
I must wash my hands with soap and water before every snack;
No one else can touch my food;
If art activities include flour or Play-doh, I cannot participate (she didn't have to cover this one because I had already spoken to the art teacher, but it's good to have on the list just in case.)
I then wrote a note to put in Wren's bag in case she wanted to give it to her teacher. I thought at this point she would roll her eyes and laugh at me, but instead she was grateful for the note. She asked to do a rehearsal where I was her teacher and she told me what she was supposed to, using the note to check off that she didn't miss anything. She did a wonderful job, though I sensed that she was nervous. It hit her that her teacher would know nothing unless she made sure to tell her, and she liked having the note as back up.
Everything went well. From what I've been told, Wren informed anyone who might be a food distributor that she was covered. Her type-A kicked in and she rocked it!
Besides notes, I saw a really cool idea this week at VBS. A parent laminated a piece of card stock and typed on it something to the effect of "my child has multiple severe food allergies, please do not feed them....." That card was pinned to the front of the child's shirt all day long. It got attention and helped ensure that any adult in the vicinity would not accidentally feed this kid.
So, what's next? Tomorrow I'm hoping to post about the importance of GlutenEase, easy-to-open containers, and preventive prep. I'll also share some pics and recipes from our week so far.
|Crazy hair day. Asher is closest to the camera. |
Sammy told me to leave his hair