By: Jamie Hinchey, MS, CCC-SLP

On this week’s episode of the Tube to Table podcast, Heidi is joined by Jamie, a feeding therapist and full-time member of the Thrive Tube Weaning Team. This week is Tube Feeding Awareness Week and we are so happy that this podcast has been able to reach families who have a child on a feeding tube, who are ready to wean, or who recently received a feeding tube. This week’s topic is all about worrying. Why do we as therapists need to worry about worrying? This topic will be helpful for all families who have or who have had a child with a feeding tube. Most parents would do just about anything for their children, and one of those things means trying to anticipate future problems to avoid any bumps in the road. While this can be helpful, there is a sneaky downside to this that is very subtle. Worrying and anxious thoughts can directly relate to mealtimes, feedings, and your child’s weaning journey. In this episode, Jamie and Heidi will talk about what this worrying looks like, what do we do when we encounter it, and what the plan should be to jump off the cycle. 

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

This week is Feeding Tube Awareness Week from February 10th-February 14th, 2020. This week is put together by the Feeding Tube Awareness Foundation. It is built to help raise awareness for the life-saving importance of feeding tubes. Feeding tubes are amazing for many children, yet there are also many families out there whose child is ready to wean from their feeding tube and learn how to be an eater! At Thrive, we work with families who have a child who no longer requires the feeding tube for a medical reason, but is unable to transition off of the feeding tube due to a variety of reasons. This week’s topic is important no matter where your child is on their journey.  

What does worrying look like? 

It is very normal for worrying to happen. It would be concerning if a parent was not at all worried or anxious during their child’s tube feeding journey or tube wean. Although it is normal to worry, it is important to be able to be mindful of the thoughts that occur and recognize whether they are true. By taking these steps to recognize this, you are training your body to start thinking in a different way. There are a few steps to get started with to help navigate through these thoughts… 

1.) Is there a problem?  

Ask yourself, is this really a problem? It sounds like a simple question, but just by stopping and asking yourself this, it can help reframe your thinking. This is especially important during a wean or within follow up because there can be so many unknowns and it can be easy to have anxious thoughts become a problem. Take a step back and go through ALL the facts. Focus on what you know including the wellness parameters, child’s cues, etc.  

2.) Is this a “today” problem or next year? 

It is very common for families to want to worry about the next steps, but it is crucial to focus on where your child is now. If you have identified that this could be a problem, ask yourself if this is a true problem RIGHT NOW, or if this is something you are feeling anxious about in the future? This is a normal feeling because many people have encountered bumps in the road on their tube weaning journey where they brought concerns up and felt like it was missed. In order to compensate for that, they often the build worries around future problems.  

It is SO important to again focus on all the facts and ask yourself: 

  •  Are there actual issues? 
  •  What is your child showing you?  
  • Have you gone over the wellness parameters with your therapist? 

3.) Is this a problem that can be solved? 

This is an important question to ask yourself because this will help shape how we respond to that problem. There very well could be a concern which may mean calling the medical team, asking for help, or having a conversation with your therapist. This may be a time to just continue to support your child, which can be hard, but important to help manage those anxious thoughts.  

Common Thought Patterns: 

Diminishing the Positive/Focusing on Negative: 

This is one of the most common thought patterns we see because it is very easy to fall into. Rather than focusing on the opportunity you are giving your child; the focus becomes on what they are NOT doing. If a child just ate an entire serving of ice cream (first thing they’ve ever eaten!), but didn’t touch the green beans, a parent may say “He didn’t eat any of the green beans!”. By having this mindset, you are overlooking some of the biggest changes that are happening to your child, and they can recognize that.  

All or Nothing Thinking/Overgeneralizing: 

Have you ever said the phrase “He never eats anything!”? This is a common phrase that we see when the child may have taken a few bites of a new food.  When we start pulling out the information and focusing on the facts, it is then easy for parents to see that he DID eat some bites today! Progress may be small in the beginning, and that is normal, but it is so important to celebrate the small changes. This will also help your child because these thoughts carryover from in your head to the table. This may cause added pressure, added supplementation, or increased stress at mealtimes. Kids can read these feelings and stress, which causes a change in the mealtime dynamic.  

Worst Case Scenario: 

This may stem back from when a parent, family, or child was going through a very hard time. Depending on the child’s history this could mean a hospital stay, a NICU stay, or a surgery. It is easy to go back to that mindset of thinking everything is the worst-case scenario. This may look like “He didn’t eat breakfast, today is going to be a horrible day!”. If that becomes the focus, then you are setting you AND your child up for failure. This is also an important time to talk with families about wellness parameters. At Thrive, we focus on talking with families prior to treatment about what is normal, what is expected, and when to be concerned. By breaking this down, parents can then take a step back, look at the facts, and identify the importance of focusing on what is happening. 

Getting Ahead of the Game: 

This is easy to do when a family wants to see change overnight or is expecting their child to feel hungry and eat an entire meal. We know that this is not how children learn, and so as parents it is crucial to shift that mindset. As Thrive, we find it so important to sit with families and talk about their expectations prior to treatment to ensure that we are helping them build manageable expectations. 

Reframe your Mindset: 

This is not a process that will happen overnight, it can be hard to do, but so important to get started. This is a time to practice your mindset change and take control of your own mind. If your child has to practice their eating skills, you also have to practice how to reign in your thoughts and manage your anxiety. Your therapists are there to help, and at Thrive, we do work with families A LOT about this during the intensive treatment. You are going to be on your own eventually, and it’s important to practice shifting that mindset. Here are a few tips to remember: 

  • Start small, and don’t expect all of the negative thoughts to go away at once. 
  • Sometimes it is good to say out loud to yourself “That is not even true.” 
  • This gets tough when things get hard (sick, teething, etc.). Practice it when things are going well so you know these strategies when the situation might not be ideal. 
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