My child has IBD. Now what?
That was the question I asked myself in the days that followed my daughter's Ulcerative Colitis diagnosis. How could I explain to her in terms that a six-year-old could understand what was happening to her body when I barely understood it myself.
I knew she was scared and needing to regain some sort of control over her world. She was very angry about learning that she would need to take medicine for the rest of her life. I worried that she would not be able to cope with or understand her emotions and was feeling inept in my ability to help her. What she needed was a safe place to express herself, learn about and keep track of her IBD.
Enter the 3-ring binder. When we first received the UC diagnosis from our daughter's GI, he handed us a massive 3-ring binder that was chock full of everything we would need or want to know about IBD... treatments, medications, procedures, life at school, life while traveling, diet and charts for tracking everything from prescriptions to hospital stays. Quite frankly, it made me want to vomit. And that is saying a lot because I have always been a fan of 3-ring binders. Usually, nothing makes me feel better than organizing a project neatly into sections with perfectly labled tabbed dividers. But this notebook...this burdensome thing made my physically ill with the dreadful reality of it's contents.
The point of the notebook, we were told, was to keep track of every detail of our daughter's disease so that she would have a record of it when she was older. We were to keep this on her behalf and give it to her down the road.
As I flipped through the binder later that day, it hit me! Why not make a kid-approrpirate binder for my daughter to actually use now? She could bring hers to all her appointments just like I was bringing the other one. As the idea took root, I realized that this could be the safe place for my daughter to express herself and a place to keep track of her disease in a way she could understand. Not only did it make me feel insanely useful to put this together, but my daughter loved it! 3-Ring binders and I were back on speaking terms!
The first thing I did was treat myself to a shopping spree at the office supply store. (Retail therapy...never a bad thing.) I picked out a hot pink binder, colorful plastic dividers, some pocket folders, and a hot pink pencil bag. Then I rushed home to put it all together.
Here are the sections and what's in them:
PENCIL BAG: We spend a lot of time in waiting rooms, so I wanted to fill this little bag with things to entertain.
- fresh crayons...the waiting room always has coloring pages available.
- dry erase markers...for the clinic rooms...they have whiteboards, but don't always have markers.
- tiny deck of cards...nothing like a game of WAR to pass the time.
- itty bitty tape measure...because what kid doesn't love to measure stuff?
CALENDAR: At the very front I placed a calendar for keeping track of doctor's appointments, meds and happy things to look forward to like holidays and vacations. I downloaded the calendar from Doodle Art Alley which had cute free printable calendar coloring pages. The coloring pages are great for passing the time while waiting for doctors.
JOURNAL: There is another section of blank white paper for journaling. At 6, my daughter was expressive, but unable to fully write and record her thoughts. She loved to draw pictures though, so my hope was that she would be able to draw out things that were bothering her or that she wanted to keep track of. The first picture she drew was of her medications.
Over the past year and a half, I would say the journal section has gotten the most use. I've encouraged my daughter to jot down her feelings when she is upset or feeling stressed out about her IBD. She's drawn many pictures, that range from angry to sad to cheerful. I've also given her permission when she and I are together to say that "IBD Sucks" - although don't tell her dad!! She's allowed to write that "swear word" in her journal, which may sound like bad parenting, but c'mon...we all know that sometimes a good swear feels really satisfying. Giving this kid a bad word to say really helps her vent her anger in a way that I feel is safe plus she feels like it's a treat to be allowed to say a bad word. Ya gotta find the perks where you can. ;)
SCRAPBOOK: Another section full of colorful cardstock serves as a little scrapbook. Now, I know at first this sounds morbid, but I wanted her to remember the good things that came out of this, not just the bad. When she first got sick, her whole kindergarten class made her cards and her teachers actually brought them to our house because she was missing so much school. I, of course, had to take pictures and after being displayed in the living room for a while, the cards went into a pocket in the back of the binder. The flowers she received after her first hospital visit were also documented. We even took a few pictures in the hospital so that she could look back and see how far she's come. My hope is that she will draw strength from these things when she looks back and sees how much people care about her and how much she has already overcome.
It's also a great place to save her favorite coloring pages and stickers from all those clinic visits...
We are starting to have quite a collection of kittens and princesses!
ACTIVITY BOOK. In another section, I printed out an activity book from the Crohn's & Colitis Foundation (CCFA) website called "IBD and Me." It is geared towards kids 8-12, but there was a lot my 6-year old understood and could do. We worked on it together to answer her questions about her body and what was happening to it. This was a great way for us to learn that she had some sick parts, but that they were just a small part of who she is. Learning what was going on inside her body really relieved a lot of the fear of the unknown.
PLASTIC POCKETS: As I mentioned above, these are for cards and keepsakes or just for holding on to things for later scrapbooking.
So, that's the binder. As she outgrows the crayons, stickers and activity books, I see this being a great place for my daughter to keep track of her favorite SCD (or IBD friendly) recipes, photos and letters from Camp Oasis or whatever other things she wants to keep track of. It truly has been a very useful tool for giving my daughter back a wee sense of control in an otherwise out of control situation.
I hope that you find this useful and if so, I'd love to hear your thoughts or ideas about this or your own tricks for helping kids feel more in control of their IBD. Feel free to share photos too! I'd love to see how this translates to other families or teens. You can post photos on my Fighting Flare FB page or tag them with #FightingFlare on Instagram.
Thanks so much for stopping by. Be sure to check back soon for some playful ways to explain digestion to your kiddos and important information about Camp Oasis! XOXO, Cindi
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