Working with children using a feeding tube or dealing with a swallowing disorder presents a unique challenge for the speech-language pathologist. The family of the tube-fed child often become exhausted and overwhelmed, so SLPs might need to address those needs in addition to treating the client. I asked parents to talk about their experiences with feeding treatments and what they want SLPs to know when gearing up to tackle the tube with a client:
Today’s society revolves around food from birthday parties, holiday meals, school cafeteria conversations and everything in between. Traci Nagy, founder of the Feeding Tube Awareness Foundation, says, “Feeding is bonding and love with an infant.”
It may take parents time to fully understand how to adapt to a new way of feeding their child. When looking for an SLP with expertise in feeding, parents want to connect to a person who understands the emotional roller coaster they’re experiencing. For example, be mindful when telling parents not to show feeding-related emotions around their child.
“When you say, don’t show emotion, realize how incredibly difficult that is when you never get a break, you never get an easy meal,” says parent Cheri P. She adds that parents not only want a knowledgeable SLP, but someone who sympathizes with what they experience daily.
The game plan
Children with feeding tubes often experience a host of additional complications as well. Coordination with other professionals remains critical to successful treatment. Listening to parents and other professionals about previous treatments and their success might prevent repetition and reassure parents that you truly value their insights.
When giving parents activities to work on at home, let them know you understand asking them to do something for “just a few minutes” significantly affects their daily schedule. Shubha P. wants SLPs to “realize that feeding/speech treatment isn’t always the only help needed and to think about home life/time spent doing various medical care for the child, so the child can enjoy life and not just be doing medical things 24/7.”
When creating the child’s game plan, help the family pinpoint a time to complete tasks as part of their existing schedule. For example, work on oral motor exercises while reading a book or getting dressed. However, “Meals are family time and not always time for treatment,” suggests Amy T.
Be mindful when offering too many strategies. Faith M. gets frustrated when SLPs “expect us to implement lots of things at once, which is not only overwhelming but then hard to see what is useful and what isn’t.”
Melissa M. recommends that SLPs stay “open to thinking out of the box and trying alternative approaches.” Each child and family is different and needs an individualized plan.
Parents of children who are tube-fed experience a variety of emotions, both positive and negative. At the heart of every situation, doctor’s appointment, setback and achievement is a child living with the tube every day. I asked: “What are you most proud of with your child?”
“I’m infinitely proud of my son” says Nagy. “He works so much harder than typical kids to do pretty much everything. He’s been tube-fed since he was 2 months old, so it’s very much a part of him. He makes me a better person and a better parent, because he goes through so much. I truly learned patience.”
SLPs often view tubes as hindering the process of full oral feeds and that clients must achieve goals quickly in order to remove the tube. Instead, measure success individually and celebrate even the smallest achievement. Feeding treatment might become a lifelong journey for some children, and any results take time.
For some children, feeding treatment causes challenging behavior. “What you see during feeding therapy is my son’s worst behavior,” says Juliet R. “He’s usually a sweet boy, if struggling in lots of ways. Feeding [sessions are] hard for him! That’s why he misbehaves.”
Celebrate success for clients tackling even the smallest goal. “Believe in things that appear impossible; you never know what your patient will do,” says Megan H.
Tube-feeding a child affects many aspects of her daily life. Feeding treatment should create trust between the parent, child and SLP. Treatment may last for a short amount of time, or be a continuous part of a child’s life.
When working with these children, remember that you may not always achieve a winning record, but you see triumph when you look through the eyes of a parent. Nicole A. wants SLPs to know that “we do really appreciate you!”
April Anderson, MA, CCC-SLP, works for National Speech/Language Therapy Center in Bethesda, Maryland. She works with infants and toddlers, as well as school-aged children with feeding disorders. She also hosts her own blog, Table Blues. firstname.lastname@example.org.