Alone in the Arena

March 6, 2020

Posted in: Feeding, Feeding Tube Weaning

Having a child with a feeding tube, or who is going through the tube weaning process can feel very lonely. It is difficult for people who aren’t experiencing it first hand to understand how tough it is, and how pervasive the fear and pressure can be, even when things are going well. Friends and family members trying to be supportive and ask questions because they care, may unintentionally cause pressure to be positive.  During the tough times, the pressure is amplified, and the questions themselves can cause even more worry or a sense of having to “fake it till you make it” It is tempting to talk about your journey with your close family and friends, in hopes of finding someone who can help, but that can be surprisingly difficult. At Thrive, we find that working through these conversations in advance with our families helps to prepare them so they can feel more comfortable and confident when conversing with family or friends in both good and challenging times.   

Of course the conversations are all different, but there are a couple of different categories to think about when planning how to direct the conversations.    

Well-meaning friends and family: These are people who are genuinely concerned, but the continual questions about how the feeding is going unintentionally increase stress levels around parenting a child who struggles with eating. Whether the questions induce guilt, anger, frustration, or just fatigue, these emotions will not be helpful if added to your own stress. No matter where you may be in your tube weaning journey, it can sometimes feel like you have to share only the positives with family, and not much of the negative. It may be helpful to work on building more “responsive” answers into your conversations. Here are a few tips to remember when talking with caring family and friends: 

  • Have an honest conversation with the person or people that you need to take a break from thinking and talking about eating: “This is a tough time for us, it helps me to take a break from talking about it so much.” 
  • Reframe the question – If a family asks, “Has he gained weight?” you don’t need to answer with a “yes!” or “no” Keep it simple with something that you ARE focusing on, such as “We’re really focusing on shifting how we’re looking at progress, our team has us focusing on development. Today he…” 
  • Decide how much you want to share in advance.  If they ask, “Is he eating (or trying more, or gaining weight)?” It may be helpful to answer honestly, but also explain a little behind your answer. It’s okay to share some of the “hard” parts of the journey, but you don’t have to share all of it! Reassure them that you have a team behind you who is helping you with those decisions 
  • If you don’t know the answer, It’s OKAY to defer..“I’m not sure, let me talk to my therapist and I can let you know! 

Bullies: These are people who don’t understand or agree with your approach and want you to know it. This can be a tough situation since sometimes the “bullies” may be fellow loved ones or friends.  Feeding and mealtime strategies often causes very strong reactions from people, and responsive feeding can be difficult to explain to someone who is unfamiliar it or who parents differently around food. Negative comments may be unintentional, but often have an element of superiority when their approach or philosophy differs. 

  • It rarely seems helpful to argue, as bullies usually don’t have an interest in meaningful dialogue. Their main concern seems to be making sure that you understand their approach and why they believe they are right. 
  • If possible, avoid interaction with them, especially around feeding. 
  • Be prepared to tactfully change the topic. 
  • Remember the truth about what you believe so they gain less emotional leverage over you. 
  • You may say that you appreciate their input, but that they don’t have the full story or you have differing philosophies: “I’m glad that worked for you, but we find that those strategies actually didn’t work in our house.” 
  • Provide them with helpful resources and research behind your approach. Our podcast, blog and website mention some helpful references, but there are decades of research behind the development of a healthy relationship with food, beginning with the CDC.  Find your own favorites and re-read them for yourself or share them with those who are interested.  

Fellow Worriers 

Some people just like to worry, and you know that they will ask questions or agree with your concerns in a way that will amplify the worries you already have.   Recognizing who these people are will go a long way to directing your response.    

  • If you are feeling a little uncertain already, It may be helpful to deflect the question or share that you are having a hard time and need a break from “food talk” 
  • If you can’t avoid them, keep it brief, but describe the progress that you see and where that will lead you.
  • Deflect the topic to another one that you can worry about together without affecting your child’s mealtimes, like local issues or less loaded child-rearing topics (screen time, school choices or potty training).