Original article by Jennifer Wilson at asha.org
Aww … home for the holidays. Gatherings with family can create cherished memories. However, parents of children with feeding and swallowing disorders can find navigating holiday meals particularly difficult.
As feeding and swallowing specialists, we speech-language pathologists can do much to serve our clients by offering tips to reduce food-related holiday stress.
Parents often go on high alert when managing their child’s feeding and swallowing difficulties outside the home. In preparing to travel, they might pack suitcases full of g-tube supplies or specific foods to help make sure their child consumes enough calories. They probably also spend a lot of time thinking about how family members might perceive their child’s feeding differences—all the while, anticipating and planning responses to those well-meaning comments and the unsolicited advice that can actually sting.
I often hear parents of clients with feeding and swallowing issues share the hurtful comments they hear from family members or staff and other diners in restaurants. Unknowing friends and relatives might say something like, “Why does he even need to use a feeding tube?” or “I don’t see why you don’t just make him eat.” In restaurants, waiters or waitresses might say, “Why aren’t you ordering for him?”
Arming parents with information and resources can help them manage these gatherings or eating out. I help families prepare by sharing the following tools they can use to advocate for their child. They can share this information with family members beforehand, in hopes of avoiding awkward conversations—especially in front of their child.
Provide online resources
Point families to well-vetted and evidence-based online resources. Direct them to resources providing them with professional guidance. For example, Feeding Matters is an international organization designed for parents and health care professionals who manage pediatric feeding disorders. ASHA also offers a page of information for caregivers of children with feeding or swallowing issues, and you can also suggest the National Foundation for Swallowing Disorders.
Practice simple explanations to share
Encourage parents to explain the nature of the problem to family members—either early in the trip or before getting together—as well as how their child receives intervention. Here are two examples:
- “Tony has trouble using the muscles in his mouth and throat. His muscles are not strong and coordinated. He is working on getting stronger in therapy.”
- “Ginger senses things differently. When she smells something for the first time, it makes her heart rate increase and she feels queasy. She used to gag and even throw up. She’s doing better. We are working on it in treatment.”
Prepare responses in advance
Help parents prepare for difficult family discussions by talking through possible responses to questions. For example, a relative might ask, “What happened to cause her to not be able to take food by mouth?” Unfortunately, a parent can sometimes feel unnecessary guilt, thinking, for example, that they didn’t do their best when helping their child learn to bottle-drink. Help caregivers feel better and formulate an answer by encouraging them to share with family members how lungs often don’t fully develop in premature babies, which causes the baby to have difficulty coordinating the suck-swallow-breathe process. This is what resulted in their child experiencing difficulty in drinking bottles efficiently.
Create a social eating story
Support parents in creating a feeding/eating social story for their children and family members. This can help the child to better understand their own journey, and help family members who don’t see them often.
A social story can consist of a group of photos organized on a tablet or a booklet of printed pictures to explain a child’s medical journey. The story could begin with illustrations of the medical challenges, progress to medical improvements and continued challenges, and end with what the child wants to accomplish through treatment.
Offering these tools can instill confidence that parents need to face their families—especially their own parents. It can also help your young clients’ parents understand they did and continue to do what’s best for their child. Given the right resources, parents can advocate for their children and increase awareness of pediatric feeding and swallowing disorders.
How do you help families of your clients with feeding and swallowing disorders prepare for often stressful holiday gatherings? Share your insights and suggestions in the comment section below.
Jennifer Wilson, MA, CCC-SLP, is a clinical instructor at the University of Tennessee Health Science Center, with more than 20 years’ experience serving clients with pediatric dysphagia in a variety of settings. She is an affiliate of ASHA Special Interest Group 13, Swallowing and Swallowing Disorders. [email protected]
