This is one of the most-read posts on the SunButter blog about a family dealing with food restrictions at school, so we're sharing it here...
How do you keep kids with food sensitivities safe in a "Good job, sweetie, here's a cupcake!" world?
We recently met April and her family, which includes husband Travis, and their children, Gabe, age 7, Miri, 2, and Juliana, age 4.
"Jules" and her mom, April.
Juliana has a rare genetic disorder, Prader-Willi syndrome, that causes a chronic feeling of hunger, plus other physical, mental and behavioral challenges. Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children.
As April explains, “The brain doesn’t understand any signals of feeling full. That means we must be incredibly careful when Juliana is around food. She would graze all day and never feel 'full.' We also need to be sure the foods she does get are packed with nutrition."
And as every parent understands, kids are surrounded by food.
Like other parents of kids with food allergies and food sensitivities, April has learned to be constantly vigilant, has become involved to find other accurate resources to help her and her family, and is always educating others to keep their little "Jules" safe.
Aaargh (teachable) moments
April remembers the evening at Juliana's preschool open house, where the cupcakes were right by the front door. She steered Juliana away from them on the way in, was careful to explain her little one's condition to the main preschool teacher and was helping Juliana get acclimated to her classroom and some classmates. Then another teacher came in, greeted Juliana--and at some point suggested "Let's go get a cupcake sweetie!"
So April stepped in, explained to Juliana that they were soon headed home for supper, and steered the conversation to other topics. But it was just one of many challenging moments--and many more to come.
1. Learn all you can about your child's condition
In addition to physicians who care for Juliana, April relies on various Facebook private groups, forums, threads and online communities to always know the most accurate information. For instance, April has learned that supplements, vitamins and the human growth hormone, along with therapy and special diets, can help control PWS symptoms.
2. Communicate, communicate
April has printed out materials from the Foundation for Prader-Willi, and shares it with every single person who will help care for Juliana. This includes teachers, directors, paraprofessionals, physical therapists and other parents (where Juliana may have play dates), and schedules frequent meetings with anyone who will also help care for Juliana. As April encourages: "If you get resistance such as 'oh, she'll be fine, we serve good snacks,' be persistent. You need to take charge. Once people understand a child's situation, they can help manage it."
April and her family also took awareness to a whole new level when they organized and hosted a One Small Step for Prader-Willi Syndrome Walk in their hometown.
3. Do all you can
Juliana currently takes human growth hormone to promote lean muscle development and help her reach her full growth potential. She also takes five to six supplements and vitamins daily. April and Travis help Juliana manage her symptoms with physical activity and healthy snacks so she’s not constantly thinking about food. She's also in physical therapy. As April says, “For the most part, if food is out of sight and out of mind, she’s okay." To control her weight, Juliana’s on a low-carb, high-protein diet. On a typical day, her preschool lunchbox might include hard-boiled eggs with steamed cauliflower or Greek yogurt with blueberries and cucumber slices. Two of her favorite recipes are below!
4. Anticipate challenges and be prepared
There's food everywhere. Picnics, parties, holidays and every event features food. April steers Juliana away from food as much as she can, educates family and friends so they don't offer Juliana food--and comes prepared with things she can eat. For instance, Juliana has a stash of snacks just for her at her preschool and daycare.
5. Simply, love
Most of all, give all kids what all they need: love and appreciation for who they are. April smiles proudly as she says,"Juliana is very sweet, loving, kind and outgoing."
Really, that's what's important after all, right?