Avoiding Trauma in the Therapeutic Setting: Considerations for Pediatric Feeding Therapies
“The therapist would say, ‘If you don't kiss the raisin, Mommy has to leave. You don't want Mommy to leave, do you?’ I would ALWAYS end up leaving because there wasn't a chance in hell she was going to kiss that raisin. She would SCREAM my name again and again, hysterical, hard-to-breathe screams and cries. I felt like I might as well have been leaving the room while someone stabbed her. I always felt it was wrong.”— mother of 4-year-old Emma, with severe selective (picky) eating
“We were told we had to make our son eat two bites of non-preferred food before he can have his preferred food. Every night at dinner, he cries and gags. This has been going on for two years, and our therapist tells us it might take years to get better.”—father of a six-year-old selective eater in sensory and behavioral feeding therapies
“He would cry and gag and spit up foods he had swallowed. I would watch them scrape it off his chin and put it right back in his mouth. It felt awful, but this was a PhD running the program.”
“The pediatrician from the NICU said to do whatever I had to to get the breast milk in, so I would hold her head and force the bottle. She would arch and cry and cough, but I was terrified she would need a feeding tube.” —paraphrased from father of infant diagnosed with reflux (later ruled out) and “oral aversion”. Dad reported that not one health care or feeding professional involved asked how he was feeding or observed a feeding.
Up to 80 percent of children with special needs struggle with eating and an estimated one in ten children experience persistent or ‘extreme’ picky eating. ‘Extreme picky eating’ (EPE) can be used to describe a child who eats so little amount or variety that it impacts growth, nutrition, or social and emotional development. Diagnoses and labels used to describe EPE have included ARFID (avoidant/restrictive food intake disorder), feeding disorder, failure to thrive, problem feeder, selective eating, or sensory challenges. These are complex, multifactorial problems that by their nature involve the feeding relationship between the parent and child, and are often a major source of worry and conflict for families.
There is no agreed on “gold standard” of treatment, and the number of centers and therapists providing feeding therapies has exploded in the last ten to fifteen years, with a range of training and experience. Feeding therapy may be offered in large multidisciplinary group practices, nestled among other special needs programs, or offered in smaller settings, even at school. Children may be referred to occupational, speech or physical therapists. They may also be in behavioral or exposure therapies with psychologists or therapists. With the addition of ARFID eating disorder diagnosis in the DSM-5, eating disorder facilities are increasingly providing care, often to older children with more complex histories, who may have wrestled with poor eating most of their lives. There seem to be as many approaches to treatment as there are providers. With known oral-motor weakness or delay, speech therapists may prescribe strengthening exercises. Occupational therapists often use sensory therapies and desensitization with a combination of behavioral strategies. Some therapists use primarily a behavioral approach with reward or response cost (removing desired items) to motivate children to eat. Some incorporate deliberate use of screens (TV, iPad) to distract children to eat, sometimes for hours a day.
For some time now I have been concerned with the apparent lack of trauma-informed care in many feeding therapies, as described in the scenarios above from my clients and parents at workshops (many seek me out for “feeding therapy failure”.) With the increasingly overwhelming evidence for the negative impact of trauma on the developing brains of children, every effort must be made to avoid traumatizing children in the therapeutic setting. With ‘first do no harm’ as a guiding principle, we must at least consider the physical and psychological risks associated with therapy-related trauma.