Home Health Care Tips to Help Caregivers Educate Others About Their Child’s Dysphagia

Tips to Help Caregivers Educate Others About Their Child’s Dysphagia

by Heather Riga
written by
Asian mothers and baby talking in the kitchen.

Parenting is hard. Trying to parent in the world of parent-shaming is really hard. It’s not enough to raise a child to be a functional member of society. It’s dealing with all of the information and “help” from well-meaning people that causes parents to feel insecure, isolated, and criticized.

Parents often hear “Just give them a taste. They’ll like it,” from family members about their kid with feeding aversions. “I gave them some and they were fine,” to the parent of a child who is NPO (nil per os or nothing by mouth). Some may even use more extreme methods to “discipline” the child into eating or drinking what the adult sees fit.

That’s not how dysphagia works.

Unfortunately, parents may get blamed for their child’s feeding and swallowing issues. Others may suggest that the child should’ve been breastfed, formula-fed, given cereal in a bottle, made to eat whatever was given, and so on.

Extended family may offer “advice” from a place of love and wanting to help. How can parents kindly remind Grandpa Joe that their little one shouldn’t have ham because the child lacks the skills to chew it? Or intervene when Aunt Susie offers a juice box and the child can drink only thickened liquids?

As speech-language pathologists, we can educate and support our patients and their families on positive ways to deal with these incidents—well-meaning or not.

When someone criticizes your child or your parenting, we all tend to go on the defensive. I try to teach parents to feel empowered instead of defensive. After all, parents are the ones on the front lines.

How can SLPs help our families tactfully navigate through all of this?

First, I advise them to acknowledge what the person is saying. Acknowledging the “suggestion” or criticism allows the other person to feel heard. So I give the parents some ideas of responses, such as: “I understand you’re trying to help by suggesting giving Billy a bite of a cracker.”

Second, parents can offer a general response focused on the well-being of their child. For example: “It isn’t safe for him to eat something crunchy or solid foods right now. We’re working hard in treatment!”

It’s up to the parent to divulge as little or as much information as they want, and they should feel empowered to decide what to share. They don’t have to explain every detail of their child’s illness to someone, unless they want to.

Third, I advise parents to close the loop by gently ending the discussion. Something like: “It would be more helpful to respect Billy’s needs and our wishes.” This should give the other person the cue that they were heard and understood, while still giving parents or caregivers the control.

If the person offering advice or criticism still won’t leave it alone, parents can politely ask the other person to stop. “If you can’t be supportive, then please don’t anything. We’re doing what Billy’s health care professionals tell us is best.”

Although saying something along those lines might be difficult for a parent—especially if they are talking to family—some people need a direct, yet polite cue. Of course, some patients’ families might find themselves facing an overly pushy person who refuses to respect their boundaries. At this point, I suggest an even more direct approach for parents by either walking away or asking the person to stop discussing the topic.

I also let parents know they’re doing a great job protecting their child and helping them in the best way. Parents often want to feel supported and heard. They need to know we’re on their side.

How do you support parents when they get criticized for their child’s feeding and swallowing aversions or disorders? Share your tips in the comment section below. 

Heather Riga, MA, CCC-SLP, works in health care specializing in pediatric dysphagia. She is an affiliate of ASHA Special Interest Group 13, Swallowing and Swallowing Disorders (Dysphagia). heatherkriga@gmail.com

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1 comment

jacksukla February 26, 2020 - 2:34 am

Thank you Heather for the informative and helpful article.

Reply

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