One of the first thoughts that may come to mind following the diagnosis of FPIES is: “How can my child be safe around other children and food?” Thankfully, with preparedness and planning, your child can experience social inclusion. Social activities are important for children to help build character, friendships and confidence. They can also bring much joy to you and your child. Here are some helpful tips to empower inclusion, safety and socialization.
Examine expectations. By examining our expectations, we can prioritize needs while preparing ourselves for social events. It is often helpful to start by eliminating high expectations; it is a rare occasion that most play dates, play groups, parties, and other events will be food-free. However, your child can still engage in social settings that provide food. Keeping a bag of safe items and foodless activities readily available will help stimulate inclusion, even with limitations.
Safety is your #1 priority. Embracing your role as the primary caregiver helps to decrease accidental exposures and preventable emergencies. Those who are new to FPIES or unfamiliar with its everyday reality may still not “get it” and may be more careless with crumbs and foods around your child than you would be. Remember that FPIES is a difficult condition for people to understand, even for parents of FPIES children. Enter events as prepared as possible and work to embrace your role as your child’s number one advocate and protector.
Be vigilant, combat fear. Your child and others can sense anxiety and fear. It is normal to have concerns and worries in social settings, especially when food is being served. By shifting your focus to engaging in socialization and encouragement of participation, you may help eliminate any additional stress and fear. It is important for parents to get a break from the countless hours of caring for a child with FPIES. If you are packed and prepared, be sure to enjoy yourself in social environments, too.
Keep it simple. Inevitably, you will be asked the same questions over and over again. “Why can’t she eat a bagel?” “What are those interesting snacks she’s having?” Or “I don’t get it. How is it that she can eat a Smartie yet she is allergic to grapes?” Try to answer as simply as you can. If you offer a brief description of FPIES that makes it clear that it’s a serious condition, those who are truly interested to learn more will ask and engage. Others may move on and that’s okay too. If you find a few friends who actually do “get it,” appreciate them and try to spend more time with them when you feel frustrated by others who don’t.
Your cooler, your friend. Think about what will be served or what other children around your child will be eating. Can you provide any similar snacks for your child? Fill your cooler and/or diaper bag with a variety of safe foods and snacks to ensure you will always have something on hand that pleases your child, especially for those moments when he or she cannot have the same food item as everyone else.
Overpack. You may be surprised by just how appealing your child’s freeze-dried fruits or veggie straws or corn chips might be to the other kids! When friends show interest in your child’s safe foods and snacks, it can do wonders to motivate your child to want to eat along with them. Having extra items on hand to share creates inclusion of your non-FPIES friends and family. Before you know it, your child’s friends may request your child’s snacks at special events!
Strive for the appearance of sameness. Allow your child to sit at the table with the other kids. Offer your child the same cup, straw, plate, etc. as the other kids. Even if their cup is filled with water and other kids have juice, drinking from a similiar cup helps increase inclusion. Allow your child to be part of the social aspect of eating, and help your child to become comfortable being around other kids who are eating. You may be nervous about other kids getting their food on your child’s plate or crumbs being within reach. It is okay and helpful to stand nearby and help ensure your child’s safety and inclusion.
When in doubt, go out. Get out and visit places that your child can engage in foodless, kid-friendly activities. Go to the park, the beach, or to the gym. Seeing your child strong and healthy may help give you the courage you need to push on with your next food trial, get past the fear of failing a food, or take a break from the struggles of feeding. It is also a welcomed break from focusing on food and can recharge Mom and Dad’s FPIES battery!