When You Worry That it Won’t Work: Lessons from Responsive Tube Weaning (Guest Post 2)

This is the second part of our series around using Responsive Feeding Therapy when the stakes are the highest.  Our first guest post from Heidi Moreland from Thrive by Spectrum Pediatrics can be found here. When You Worry That It Won’t Work Elisabeth Kraus, MiT; Becky Keifer, MA-SLP, CCC; Lisa Grentz, RD Growing Independent Eaters I’ll never forget that phone call.   I was speaking with a mom who had spent the last years trying to be everything, and everyONE, that her little girl needed. A dietitian herself, she wept as she told me that she never imagined that her child would struggle to eat – struggle badly enough to require tube feeding in order to grow, in order to stay alive. And here they were, years into their journey, her daughter eating and drinking nothing by mouth, all while she tried to function as dietitian, nurse, doctor, feeding therapist, house cleaner, chauffeur, cook, and everything else that you can possibly imagine. Nothing, she told me, was helping her daughter learn how to eat, and she was exhausted – tired from the years of trying to do it all.  “I just want the chance to be a mom,” she said. “I’m don’t think I can keep doing it all.” I’m not sure if she knew, but I sat on the other end of that phone call, crying myself as I recognized so deeply the pain she felt. She wanted her baby to be okay. She just wanted her baby to eat, not just because she had to, but because she experienced the wonder of family mealtimes and the food...

Responsive Feeding Therapy with Severe Feeding Challenges: Lessons from Responsive Tube Weaning (Guest Post 1)

From parents and even professionals at workshops, we are often asked, “Well, Responsive Feeding Therapy sounds good, but does it work for children with severe challenges, or who ‘can’t’ feel hunger due to medical issues or feeding tubes?”  In this first guest post of two, we explore responsive therapies where relationship, autonomy and trust are guiding principals. The lessons learned from these challenging cases can apply to every family struggling with a child who is an anxious or reluctant eater.                             Heidi Moreland graciously shares some of her thoughts around tube weaning. Heidi Liefer Moreland, MS, CCC-SLP, BCS-S, CLCKids who are on feeding tubes have often missed the early period of learning to eat. For some of them, the medical difficulties that led to the placement of the feeding tube may continue to impact their development.  On top of that, the feeding tube itself will impact hunger, making learning to eat seem like unnecessary work. Children who are fearful, who learn more slowly, or have more difficulty with physical coordination are at even greater risk of getting “stuck” in a pattern of fear, feeding refusal and family frustration.Unfortunately, that often leads to the belief that they can’t or won’t learn to eat in the way that other children do. Parents and other professionals feel that if they want to help children become oral eaters they have no alternative to direct instruction, bribing, or forceful feeding tactics.  The problem is that we know those strategies are harmful to a healthy relationship with food and result in the most fragile eaters...

“What do I say when…” Extreme Picky Eating Edition

A big challenge that trips parents up daily is, as one mom put it, “Knowing what to say in the moment.” Sitting across from a child,  parents often feel pulled into those familiar, but counterproductive patterns: the negotiating, bribing, nutrition lectures, sticker charts, or threats around video game time. When the old patterns haven’t worked, but parents aren’t quite sure what to say, we offer some suggestions that: reduce conflict, build relationships, support appetite (anxiety and conflict can kill appetite and curiosity) and make mealtimes more enjoyable for everyone. These “scripts” can be used flexibly and adapted for different situations. We even recommend parents practice some of the phrases. Here are a few that we include in the book with the reasoning behind them. For more thorough discussion of how to transition to responsive feeding and more script examples, check out Helping Your Child with Extreme Picky Eating. One caveat: If you say something like, “We won’t make you try foods anymore,” be sure you are ready to mean it. This is tricky stuff. Learn as much as you can before you jump in, learn about common obstacles and ideas on how to approach them, know what to expect, consider online support (we love the private Mealtime Hostage group) or get help from a responsive feeding professional. These are just suggestions; adapt and find the words that work for you and your child (be responsive). Acknowledge your child’s feelings. Anxiety often plays a big part in extreme picky eating. If it helps your child, begin by slowing down and acknowledging his feelings. “I’m sorry you’re upset about X.” “I...

The Trauma Trap: Impact on Families and Feeding

Trauma: • an injury (such as a wound) to living tissue caused by an extrinsic agent • a disordered psychic or behavioral state resulting from severe mental or emotional stress or physical injury • an emotional upset   We don’t usually use the word trauma when discussing feeding disorders, but we should.   Children who have experienced significant emotional stress during feeding because of GI discomfort, poor oral control, cardio-respiratory issues, or forced feeding are at risk for disordered behavioral responses around feeding for many months (or years) to come. Infants born prematurely exhibit feeding problems due to neurological and respiratory immaturity and the myriad of issues that can arise while in the NICU. These challenges follow them out of the NICU and into the home, and while being able to go home is a milestone in and of itself, there are many more milestones to overcome when it comes to feeding. “During development, the cognitive, motor, emotional and ‘state’-regulating areas of the brain organize in response to experiences. And in each of the diverse brain systems which mediate specific functions, some element of previous experience is stored.” (Perry, 1999) The infant’s early experiences (good or bad) and their responses during feeding down the road are inevitably linked. Take Nash*, an 18 month old (corrected age) who struggles to get through a meal without gagging and vomiting. Born at 30 weeks gestation, he relied on a naso-gastric (NG) tube for nutrition for 6 months, which involved the trauma of reinsertion when the tube had to be changed as well as the chronic discomfort inherent in the placement of a...

A Journey to Healing and Growth: One Mother’s Telling

Bethany’s Journal: Amari’s Journey of Healing   Amari, age two, was adopted at age 14 months from Ethiopia and initially had some hoarding behaviors. After being home for about a year, her eating changed dramatically, with no identifiable cause. While underlying medical causes were being evaluated, Bethany needed help. The following are excerpts from Bethany’s notes and emails on the first few months during the transition from an anxious/pressured feeding relationship to one focused on routine, avoiding pressure, and healing anxiety. This post is largely excerpted from Katja’s first book Love Me, Feed Me,  focused on adoptive and fostering families. Bethany used responsive, trust-based philosophies expanded upon in the STEPS+ approach in our book, Helping Your Child with Extreme Picky Eating. This post is for informational purposes, and not meant to replace care of the individual child.   February 10, day one: A few months ago, she started to get pickier and ate less and less, eventually eating about five bites at each meal and down to two cups of milk a day and gaining nothing. She would pocket and take an hour to finish those bites. In one year home, she grew four inches and gained only nine ounces . . . We saw a nutritionist who told us how to sneak calories into her food. We saw a speech pathologist who determined that the issue was “psych” and barely glanced at her. In the last week, Amari has gotten SO much worse. She hardly drinks 1 and a half cups of milk/day, drinks nothing else, and takes about three bites at meals. I can force feed her more, but she gags constantly and...

What is “Responsive” Feeding Therapy?

Responsive feeding therapy is facilitating (re)discovery of internal cues, curiosity and strengths, while building skills (mastery).   “You don’t teach development, development is discovery.” Serena Wieder PhD (video on DIR Floortime)   Responsive therapies respond to each child, meeting the child where he or she is, not following a strict protocol without deviation.         By necessity, this occurs within a relationship. The primary is between the parent and the child, otherwise known as the “feeding relationship.” (Satter, Chatoor…)     Responsive feeding and feeding therapies also happen in relationship between the child and any adult feeding or providing food and meals to the child, and with any therapists involved in more formal therapies.     “Happiness is the most important factor at mealtimes and in therapy programs to help children develop feeding skills.” Suzanne Evans Morris SLP PhD Therapist and author, Pre-Feeding Skills     What do you think? What do responsive feeding therapies mean to you? Share this...

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