Born to Eat

Born to Eat

By Heidi Liefer Moreland, MS, CCC-SLP, BCS-S, CLC

Clinical Coordinator Tube-Weaning Program

heidi@spectrumpediatrics.com

In our tube-weaning program, one of our primary goals is to facilitate self-regulation, so that independent eating will allow the child to eat enough to discontinue using the feeding tube as soon as it is no longer medically necessary.  We rely on the Division of Responsibility described by Ellyn Satter to help parents determine their role in helping their child learn to eat.  But what is self-regulation, and how does the division of responsibility help to make that work?  

Shonkoff and Phillips describe self-regulation as “a child’s ability to gain control of bodily functions, manage powerful emotions, and maintain focus and attention.”   That means that self-regulation isn’t just being able to respond to body cues such as hunger vs. not being able to do so.  Self-regulation is becoming more aware and in control of your body and mind.   Development and learning expand the function of our basic operating system, as all of our experiences result in brain changes that inform our future actions.  Eating is one of the earliest examples of integrating physical, emotional and attentional abilities to allow children to transition from reflexive “hardwired” sucking to volitional eating.  Typically developing children do so in a relatively seamless manner, showing adaptability to new types of utensils, foods, and mealtime environments as they are exposed to them.  (See Gillespie 2006 for a simple, parent-friendly article that explains the development of self-regulation and the role of eating in infancy) http://journal.naeyc.org/btj/200607/Gillespie709BTJ.pdf 

It is important to realize that this is a process that everyone goes through, not a skill that is present or absent. Becoming aware and in control of your body and mind is the foundation of learning and development, including the transition from reflexive eating to self-directed eating.  For some children and families the process is especially challenging as developmental and medical challenges can disrupt or halt the process of learning to eat.  Negative experiences and situations can further complicate the child’s abilities and motiviation. However, that doesn’t mean that they can’t learn to be in charge of themselves and their eating to the best of their ability. 

The Division of Responsibility described by Ellyn Satter (Satter, 2007) states that it is the child’s job to determine the need to eat (if) and to determine how much their body needs (how much) by continuing to eat if they need more and stopping when they are full.  The caregiver supports that eating by determining where, what, and when to eat.  By limiting the caregivers’ role to that of facilitator, it allows the child to become successful in their own role of being the eater.  Because children don’t develop that skill overnight even in the typical population, it would be unrealistic to expect children with no experience in eating to respond to hunger by developing self-regulated eating instantly.  Their role needs to be learned, which takes time and an intentional decrease in support that is often more protracted than most people realize.    

 How do you teach self-regulation? We have found that the most helpful tool or strategy in our practice isn’t to teach oral motor exercises (even for non-eaters!) or to count bites to achieve volume, but to provide the “just right support” that will enable the child to grow into the ability to be responsible for their own eating and learning.  

Here are some of the concepts we rely on from both eating literature and general development that guide our practice in helping children develop self-regulation for eating.  

Everyone has the potential to self-regulate: We begin swallowing in the second trimester in-utero, and are equipped with reflexes to drive the eating process immediately following birth.  Trying to coordinate swallowing with sucking and breathing is one of the first coordinated tasks we attempt, even if prematurity or other medical complications interfere with success.  Clearly the foundations of being an eater are hardwired into our default “factory settings.”   

Self-regulation begins with the basics:  One of the first areas in which children demonstrate control of their body is in the area of feeding.  Although the movements begin reflexively, it has been shown that infants have or develop the capacity to self-regulate their intake if there is no adult interference. (Daly, et al, 1993; Dewey, et al, 1993).  However, anyone who has watched infants mature realizes that at that same time as the oral skills are developing, they are also developing social-communication skills, emotional regulation, and greater attention to people and tasks.  

Self-regulation develops over time: Children begin eating very small amounts and build up over the first few days and weeks of their life.  In fact, most children lose weight before their skills and coordination improve and they are able to eat enough to begin gaining weight (Dewey, et al, 2003).   Typical eaters then progress to new skills for eating by eating, not through skills that are taught to them by the feeders.  

Disrupted self-regulation can result in eating too much or not eating enough: There has been a considerable amount of research done regarding the development of self-regulation in regards to obesity in children.  Once we realize that both under- AND over-eating can result from a disruption to self-regulation, we have a significant amount of data and research that can inform us in our hope to facilitate the development of self-regulated eating.  

Self-regulation is susceptible to interference:

• Medical – We have all seen kids who developed a “learned aversion” following reflux, aspiration, medical interventions, or prolonged illness.   We also hear from many families that kids who were eating some by mouth prior to tube placement stopped completely after the tube was placed and they started receiving all of their necessary nutrients by tube.  

• • Protecting yourself from something harmful is also self-regulation-.  Shonkoff and Phillips also note that infants and young children are good at reaction, but may need help (and time) with regulation.  Although it seems like feeding refusal is evidence of a lack of self-regulation, we believe that keeping oneself safe in situations that feel un-safe (such as aspiration or fearful feeding situations) is a very basic attempt at self-regulation, and should be considered a skill, not a deficit.  

• Parental –Adult control of mealtimes has been shown repeatedly to be especially harmful to the development of self-regulated eating. It results in a negative spiral of pressure, refusal, and feelings of failure on both sides.  (Birch and Fisher, 1998; Franklin, 2003; Segal, 2014; Birch 2001 fox, 2006; Savage, 2007; VanDer Horst, 2012; )  Although most of the articles addressed  parent behavior because they are typically the ones who feed children, in our program we have found that the same results apply to any adult who engages in controlling mealtime practices, even therapists.   

• Age – As eaters, we all know the feeling of eating past full, even though we know better.  Young toddlers and infants will both even out their intake over a rolling 24 hour period, even if they differ between meals. (Shea,,1992; Birch et. al, 1991)  They have also shown the ability to eat more or less food based on the energy content of their diet or on the addition of milk to the diet.  However,  even young preschoolers begin to show susceptibility to outside influences to override their bodies’ cues to over- or under-eat, (Birch & Davison, 2001; Birch & Deysher, 1986; Fox, 2006) which can make tube-weaning more difficult (Wright, 2011).  Thus making a focus on self-regulation an important early priority. 

Self-regulation can be taught: Children can be taught to respond to internal cues of hunger and fullness to demonstrate more hunger-based, internally motivated eating.  (Johnson, 2000) 

Self-regulation is possible, even for children who are tube-dependent: A growing number of studies has shown that even children with special needs or long-term tube-dependency can develop self-regulated eating.   (Wright, 2011; Wilken, 2013; Trabi, 2010; Wright, 2011)

 We have found these principles to be paradigm-shifting in our practice of helping children to become independent eaters. 

Focus on strengths, rather than the weakness: Once children are identified as “poor feeders,” and given a pre-set volume to achieve, their attempts to self-regulate intake or the feeding situation are viewed as proof of inability, rather than small beginnings to be supported.  Leave a little room for them to improve and support their attempts.  For example, if they show signs of hunger, wait to feed them until they demonstrate those cues.  If they are capable of reaching for the bottle or opening their mouth, wait until they do so, rather than doing it for them.  Sometimes the attempts are so fragile and buried, you have to work hard to find something that you can respond to, but the result is worth the effort!  

Help assess the gap: In our program, we create a need (through hunger and independence).  As therapists, we assess the Gap between the eventual goal and the resources the child has to meet that need.  First, we work with parents remove the barriers (such as fear and pressure) to see what the child can do without overdoing our assistance.  As we go, we continually reassess the child’s resources for the task, and provide support (supplemental tube feedings, adapted equipment, more simple or interesting food items, adaptive equipment, tube support for fatigue with feedings) as needed to help them become successful.  Our goal is always to decrease support as they become more independent. By actively shifting this support to the physical, emotional and attentional aspects of eating, (not just the oral motor tasks) we are working towards independence with eating as well.   

Explain development – Many parents are terrified of “losing the suck,” when it is actually appropriate development to mature past reflexive sucking.  It is true that the reflexive suck does make learning to nurse or drink from a bottle a smoother process, but it is part of the normal process of development for eating to become more volitional.  It is really important to help families see what unintentional things they are teaching as they force feed in an effort not to “lose” the reflexive eating when the child may be wisely avoiding something that causes them distress or simply maturing past that period.  Help them to see that they may actually be learning to associate food with reflux and aspiration, fear and stress, even pain.  Then you can guide them in finding ways to facilitate enjoyment of the relationship and the mealtime situation that will lay the groundwork for future eating.  

Avoid adding stress – Most of our families tell us that a stray negative comment from a doctor or therapist can be devastating.  In an effort to be truthful, we can sometimes trample any hope parents have of helping their child improve their ability to self-regulate.  It is particularly traumatic to use the words, “do whatever it takes” to get a certain number of calories in. For kids who are having small oral successes, those last 7 calories may tip the balance toward full tube dependency when oral was present but struggling.  As medical professionals, we can not only overpower children, but also their parents.  By adding fear into the equation, we enable parents to engage in behaviors that are KNOWN to interfere with self-regulation.

Work WITH the parents   There is a considerable amount of literature that describes the importance of empowering parents of medically fragile children.  (Wilken, 2012; Greer, 2008; Lasiuk, 2013)  While therapists are typically good at fostering independence in our interactions with children, sometimes we have more difficulty with fostering independence in the parents.  

We find much better outcomes and manageable plans when we develop them as a true team.  It may only take a small shift.  For example, “our eventual goal is to allow him to eat until he is full, but he is little and still tires out towards the end of these long meals.  What are some ways we can help him be successful?” may be more helpful in reaching a workable strategy than prescribing a set period of time and number of calories and leave them to figure out the rest without help.  They may prioritize 92 ml over 89 ml, rather than watching cues for fatigue.  A great webinar from ASHA on this topic of coaching was extremely helpful to our team.  https://www.asha.org/eWeb/OLSDynamicPage.aspx?title=Family-Guided+Routines-Based+Intervention+and+Coaching+in+Early+Intervention+(On-Demand+Webinar)&webcode=olsdetails .  The website http://fgrbi.fsu.edu/ also has many helpful resources on implementing this type of intervention.  

Help develop a team:  As providers, we are in a unique position to help families develop a team.  Many families tell us that disagreement between or with medical providers causes a considerable amount of stress that we are in a position to alleviate.  We may be “feeding experts” or experts in other medical areas, but the parents are experts on their child.  Work with them to obtain agreement between providers, or help them to find providers who will listen and take their input into account.  For information on the Spectrum Pediatrics team, you can check out our Feeding Tube Weaning Program at http://spectrumpediatrics.com/ 

 

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