Coaching Parents of Children with Feeding Disorders

November 13th, 2019
By: JobsTherapy.com Content Staff

For parents of children with feeding and swallowing disorders, the normal holiday stress can be amplified, both by family members at home and by workers and customers in restaurants and public places. Intrusive questions, rude comments, unsolicited advice and prolonged stares at the sight of a feeding tube all can take the fun away from family gatherings and visits to restaurants.

In the ASHA Leader, a publication of the American Speech-Language-Hearing Association, Jennifer Wilson, a clinical instructor at the University of Tennessee Health Science Center, offers several holiday tips for parents of children with feeding and swallowing disorders. And she recommends that parents share them with loved ones in advance to avoid awkward conversations, especially those in front of the child.

Educate family members – Direct family members to respected online resources such as ASHA’s website, Feeding Matters, an international organization for parents and health-care professionals who manage pediatric feeding disorders, the website of the National Foundation for Swallowing Disorders.

Prepare simple explanations and responses – Parents should explain the child’s medical problem, and how he or she receives intervention, to family members, either early in the trip or beforehand, in a straightforward way that is easy to understand.

In the ASHA Leader, Wilson offers the following example: “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.”

Similarly, parents can prepare simple answers to commonly asked questions, according to the ASHA Leader. If a relative asks what happened to cause the child not to be able to eat normally, a parent can explain that a premature baby has underdeveloped lungs that cause the baby to struggle to coordinate the suck-swallow-breathe process. This condition caused the child to have difficulty with drinking bottles.

Show the child’s progress – Wilson says parents can create a “social story” about the child’s medical journey to help family members and friends better understand it. The social story could comprise a series of photos organized on a tablet or a booklet of printed pictures, beginning with illustrations of the medical challenges, progress toward improvements and ending with the child’s goals for his treatment.

Providing these tools to family members and friends before or soon after arriving for a family gathering can make parents more comfortable during holiday festivities, the ASHA Leader says. In addition, these resources can help parents and child patients understand that they always have done what is best for the child throughout this medical journey. By sharing their children’s stories, parents can advocate for their kids and increase public awareness of feeding and swallowing disorders, the article says.

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