By: Jamie Hinchey, MS, CCC-SLP

In this week’s episode, Jennifer and Heidi are discussing the common traps in tube weaning and how people can easily get stuck on their journey from feeding tube to family table. As discussed in previous episodes, Jennifer and Heidi will use the pyramid infographic as a reference for building the foundations to become an oral eater. When time is spent in the foundational aspect of the tube weaning process, the final stages feel easier and have a better flow. This episode works through each foundational step of the pyramid and at each stage, discuss what the common breakdowns are and where parents feel stuck.

One of the most common breakdown happens when families try to do things out of order and skip over the foundational pieces. Often families may feel like they are ready or want to rush the process and what people don’t realize is that by “skipping” steps you are adding pressure and not allowing your child the time to build trust and understanding with food. Jennifer and Heidi walk through the 6 phases of the tube weaning process: First, Do No Harm, Rest and Play, Creating Responsive Mealtimes, Discover Internal Drives to Eat, Supporting Skill Development, and Thrive. 

You can download this episode from ItunesStitcher, Spotify, Google Play, or listen to it below:

What about therapy? 

Unfortunately, feeding therapy can be one of the most common environments where therapists or families are skipping over the foundations and working on things out of order. This is a time where therapy focuses on working on skills prematurely, before a child has had the opportunity to build trust or understanding. During this time, it is often well-meaning therapists and families who feel like their child is ready to start working on skills or eating, but this is when pressure can start and kids are sent mixed messages. It is crucial to go through each phase of the foundational pyramid and identify common obstacles to look for when you’re faced with something challenging.  

First, Do No Harm: 

In the first phase, we encourage parents to stop any practices in the family or by the medical team that could be complicating the child’s relationship with food and reinforcing feeding tube dependency. Common medical obstacles at this time include looking at food allergies, reasons for vomiting, feeding tube schedule, or overfeeding. There may be obvious reasons why your child is upset or uncomfortable, and those are the first things we address. This phase is about taking a step back and looking at the whole child because often times when we focus specifically on their oral motor skills, we skip over how the medical intervention could be impacting their relationship and trust with food. 

Rest and Play: 

During this phase, the focus is to look at mealtimes and find ways to build your child’s trust with food. It is important to accept food refusal at this stage and recognize that your child may not eat anything, and that is okay. This “rest” from “work” is crucial and is an area where families get stuck or often skip over. In this phase, success does NOT mean that a child is eating. Success means that a child is relaxed, more interested in food, and happily engaging with their family at a mealtime.  Parents share that at this phase, it feels as though they are doing nothing, but that is the MOST important thing to do at this phase. This gives your child time to explore with food, whether it be through play or small tastes. Your job as a parent at this phase is to allow your child to initiate and direct their play.  

  • Mealtimes should include being together without any expectations or stress at the meal 
  • Prior to this tube weaning process, most parents had to put their trust in their medical providers to keep their kids safe and healthy 
  • Now, as a parent, you are the person that is going to lead your child from tube dependency to eating.  
  • This trust and attachment phase often gets over looked in traditional therapy when parents are asked to be out of the room, or a child is offered external rewards for eating.  
  • Many parents understand WHY we are doing this, but forget how long this can take to either rebuild trust or gain initial trust for eating. 

Creating Responsive Family Mealtimes: 

Once your child learns to trust food and the people who are feeding him, you can then start to create mealtime habits that allow the child to explore food when they are ready. Mealtimes can look different for all families, and it’s important to not feel pressure to make your mealtime look a certain way. Think about this question, “Does everybody want to be there?” Mealtimes should be enjoyable for everyone and be a time for the family to be together and engage with each other. Food happens to be at the mealtime, but eating is not the main point around food. 

  • If you feel like you are doing “work” at your mealtime to convince your child to eat, then the message they are receiving is “work”. 
  • If you’re working to have something sound delicious, then your child will pick up on that and perceive food as something they should HAVE to enjoy. 
  • Understanding your responsibilities as a parent and your child’s roles at the mealtimes. We discuss the Division of Responsibility frequently throughout therapy to help parents remember these roles. 
  • Parent’s Role: What, When, Where 
  • Child’s Role: If they are going to eat and how much 

Managing expectations is important at this stage to remind yourself that responsive mealtimes does not mean a certain amount of intake. Responsive mealtimes are about setting the environment and building structure. Frustration is common at this stage, and that’s okay. Talk with your partner and create a backup plan to “naturally” give yourself a break, like going to get a drink of water, music in the background, or conversation starters.

Creating responsive family mealtimes is essential to the success of the next 3 steps to becoming a happy and healthy eater! 

Discovering Internal Drive to Eat: 

This can be another tricky time where families get stuck. If your child is stuck during this phase, it is most likely since other phases were rushed through or skipped. The first piece of advice would be to go back to the pyramid and identify if there were phases that you may have missed without realizing it. 

We’ve discussed in previous episodes the 4 internal drives children eat: Hunger, Togetherness, Curiosity, and Pleasure. If you try to work on hunger without the other internal drives, it will not be successful. Families often think hunger is the ONLY internal drive to eat and if you make a child hungry, they will eat. When the foundations are skipped and that is the only focus, you’re child is not learning about trust and comfort around food, but only learning a scary new feeling associated with an already scary mealtime.  

If you have gone through the first 3 layers successfully, then hunger is very important. There may be a need to play around with the drive for hunger, but make sure you are not accidentally working on hunger without working on the other foundations.  

Another common trap is that families have a difficult time recognizing baby steps. They expect children to get hungry and start eating the amount their sibling eats. We would not expect a child who just learned to walk to walk all over the house, they take baby steps, fall, and learn how to be consistent. Going back to the DOR, adults can choose what food items at this phase, but it is important you allow your child to learn their fears and trust around food, which means allowing them to explore new tastes and flavors. This is not the time to focus on variety or “healthy” eating, it is a time for the child to learn how to respond to those internal drives for eating. Children should still be able to have foods that are easy to eat and that they are comfortable with. Mealtime Hostage is a great resource we use a lot that says, “I will make sure there is something that feels safe for you at the table”. This is an important message that is also discussed in the Extreme Picky Eating Book here.

Supporting Skill Development 

Many people are surprised to see that this comes later after the first 4 layers, but it is important to have the trust and relationship BEFORE working on skills. Often, skills are worked on in the beginning and there are frustrating results, or no results at all.  

  • The most common area where families get stuck in this phase is that there has to be meaning for a child to improve skills. There must be the internal drive for eating before we can expect a child to learn to suck a straw or chew a cracker. 
  • The skills are very important and there is a time to work on oral motor skills, but if you work on the foundations first, the skills come along much more naturally and quickly.  
  • Research in motor development supports this process showing that when the activity is natural and has an internal drive, the skill development happens more rapidly.  

Thrive: 

This is where you have a child participating in mealtimes, enjoying food, and being together with their family. Mealtimes are manageable, togetherness is the focus, and children are eating enough to grow and gain appropriately. If you have done the other levels and taken your time, then this phase should not cause any difficulty.  If there is a bump in the road, it is typically a common bump that all children go through. We know that children eat less when there is a change in caregiver or when kids are sick. It is important to keep this in mind and focus on managing your own stress and learning to trust your child. Here are a few things to remember:  

  • Childhood is marked by variability and looks at long periods of time, rather than the day to day focus of what your child is eating.  
  • Children do things differently at other stages of development  
  • Being suspicious of food at the toddler or preschool age is normal 
     

These can all be exaggerated for children with a complicated history, but when you have made it to the top and have built a strong foundation, meals and life are marked by ease and that is what we want for everybody! 

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