The article, When Your Baby Won’t Eat chronicles the heartbreak and triumph of one family’s journey with pediatric feeding struggles. The author and mother shares some of the confusion around finding the right help for her family. Virginia Sole-Smith writes, “Do you try to correct the behavior- training a child to eat well –Pavlov Style- or do you try to rediscover that primal urge and trust her to take it from there? It’s a divisive question among the doctors and therapists who work with children like Violet, as well as a debate unfolding consciously or not, around most kitchen tables in the country.”
Feeding therapy programs differ; from the ABA, or applied behavioral approach on one end of the spectrum (the Pavlovian approach) where adults may hold a child’s hands down, may use “gentle mandibular guidance” and “escape extinction,” to a more responsive approach where the child’s reactions and behaviors are not viewed as behaviors to eliminate, but as vital communication and clues to guide treatment.
Confusing for parents is that many treatment programs, even with opposing approaches, sound the same online, using words like “child-led” and “family-centered” to the point that parents might have no idea what is actually happening in therapy. Parents, we know it is beyond confusing; experts in the field of feeding kids often express opposite viewpoints, with OTs, SLPs, MDs, RDs, PhDs disagreeing on the best ways to treat pediatric feeding challenges. Consider the following sentiments, from folks in positions of authority. Which is “correct”?
Never force your child to eat.
You’re the parent, it’s the same as with seat-belts, just make them eat it!
If your child gags the puree, scoop it back up and put it in his mouth.
Gagging is a behavior he uses to avoid eating and that needs to be extinguished.
Increased gagging means the therapy likely isn’t helping.
And on and on…
Often parents aren’t even aware that there are choices, and drastically different approaches to helping children who struggle with extreme picky eating. Many parents simply get a referral to the closest center or the children’s hospital and assume it is the best, or perhaps only option to address feeding.
So, if you are pondering a referral, or are in therapy that doesn’t seem to be a good fit and wonder what to do next, here are a few general pointers about finding the right help for your family. Remember to trust your gut.
1. Intake and evaluation must be comprehensive.
NOT: “We filled in a half-sheet of paper and started an intensive behavioral protocol where our 9 month-old was in front of screens 6+ hours a day.”
Feeding problems are incredibly complex. Any evaluation must include a thorough oral and functional exam, written or in-person discussions of feeding history, medical and complete growth history, and observing a feeding or meal. Just because a program says it has a ‘feeding team’ doesn’t mean you are getting a thorough evaluation. Do you get a sense that those treating your child understand his medical history? How he related to food, from birth on? The dynamics around what you have tried, what has helped and what hasn’t?
2. Your questions and concerns must be listened to and addressed. You and your child’s therapist need open communication, and trust.
NOT: “I kept asking them if the tongue-tie that was noted shortly after birth could be a factor and they dismissed me, without even doing an exam. Several months later after an NG tube and weight loss, we saw a new OT who was concerned about his lack of tongue mobility and referred us to an ENT. There was immediate improvement after the tongue release procedure.”
You are your child’s best expert. Your child’s therapist should interact with you as much as, if not more than with your child. You and your child are the primary feeding partners, you and your child’s therapist are partners, your child and her therapist are partners.
3. You should be a participant and observer in therapy when at all possible.
NOT: “They led him screaming into a back room from the first day forward. He is two and a half. I could hear him screaming and crying and when I asked that I be present in therapy, they told me I was noncompliant.”
As a parent, you are the one feeding your child in the home- you can’t keep your therapist around for all meals! How are you to know what kinds of strategies to use at home if you never see them in person? Parents often feel less than confident after months and years of struggling to feed their child, and working as a partner with the therapist to learn the techniques IN PERSON sets you up to be competent as your child’s feeding partner.
4. Children must first feel safe, and ideally happy, to progress with feeding therapies.
“Happiness is the most important factor at mealtimes and in therapy programs to help children develop feeding skills.”
Suzanne Evans Morris SLP PhD Author pre-feeding skills
Do you think your child feels safe and comfortable with her therapist? Does she scream and shake during or even before therapy? Does he vomit in the car on the way there? Children with extreme picky eating often also experience anxiety, and anxiety kills appetite and makes learning to feel good about food really hard.
5. Your ongoing concerns must be taken seriously. Feedback about your home experience, and a responsive approach is key.
NOT: “He cries and gags every meal trying to eat his ‘non-preferred’ foods. His anxiety is getting worse.”
“When I asked if the therapy was traumatizing him (he would scream and gag while therapists held his arms down) I was told he is too young to remember.”
“We tried to do the protocol at home for months and we were told it didn’t work because we held the spoon wrong.”
When your concerns about your child are listened to and respected, your therapist will have that much more information with which to figure out the puzzle that is your child. If you feel that you can’t be honest about what is happening at home, it may be time to reconsider the therapist. Your goals need to be aligned.
6. Does the therapist promise too much, too soon? Do you feel rushed or pressured to make progress?
Odds are that your child has struggled with eating most of her life. Promises to have her eating in only a handful of weeks (or days!) can add pressure and undermine progress. Sometimes progress feels slow. Your therapist should help you recognize early signs of progress that may not be about eating new foods right away.
7. Your child might not need therapy at all.
Determining if your child could benefit from therapy is something we spend a fair amount of time on in our book. If your child’s weight is stable, she is growing, even if she is small, and her basic nutrition needs are being met, you might not need any formal therapy. There is much parents can do to guide progress in the home. Some children in therapy don’t need it, and we believe that some therapies can slow progress. While at the same time, many children and parents who need support aren’t getting adequate help! What a mess! The right therapist or feeding team can be incredibly helpful. But a poor fit can slow your child’s progress. As one mom said, “Bad therapy is worse than no therapy.”
To help you find the right therapist for your family, we hope this list of discussion topics and questions can help you open a dialogue with current or potential therapy partners:
• How do you describe your approach to feeding therapy? (ABA or applied behavioral therapies are not generally consistent with our STEPS approach.)
• Do you believe that children are capable of self-regulating intake, even if they have had challenges?
• Are you familiar with Marsha Dunn Klein’s “Get Permission” approach, Ellyn Satter’s division of responsibility,
or “responsive” feeding, and do you incorporate any of these concepts?
• How many years have you been doing feeding therapy? From whom did you learn? (Other trusted names are Suzanne Evans Morris at New Visions, Nina Ayd Johanson AEIOU feeding approach and training, Catherine Shaker, Jennifer Berry at Spectrum Pediatrics among others) Where have you trained?
• Do you have specific training to address oral motor issues (if interviewing an occupational therapist or OT) or
will a speech-language pathologist (SLP) evaluate my child?
• Where do you do therapy, and would I be able to stay in the room?
• Can I observe or watch a video of a treatment session?
• What kind of behavior management do you use? Do you use rewards or negative reinforcement? For example, do
you show disapproval or hold food in front of the child’s mouth until she gives in?
• How do you handle a child who refuses to participate?
• How do you present food? Is it served as an option (family style), or as the one thing he has to eat?
• Do I bring my own food? Do you have food options to help me?
• What kind of parent education and support can you offer? Do you have suggestions for parent support groups or
• How do you help families integrate your advice at home?
• What can you offer if any of your suggested techniques result in conflict or a power struggle?
• Can you connect me with a few parents with whom you have worked?
• How will we know when we are finished with therapy?
Reflect on the answers you get to these questions and what they mean to you. Trust your gut: if what your therapist asks you or your child to do increases conflict, anxiety, or gagging, it is likely to make matters worse.