Children are not “good” for eating, and “naughty” for not – and this is especially true for those who have been tube fed for all or most of their lives. For this population, “not eating” is a strangely appropriate response to being tube fed.
When starting a wean, there are so many questions. One of the recurring fears that I discuss with parents is: What if this doesn’t work, where do we go from here? When tackling this answer, it’s really important to back up a step and to start with another question: How do we define success and “working”?
So often I hear loving and well-intended caregivers using phrases like 'I was able to,' or how do I 'get it into them' (referring to food, utensils, or oral motor therapy tools getting into children). How do I 'get them to open their mouths' so I can 'do x to them.' I hear meals described as feeds, sessions, therapy, or exercises. Lots of words that describe doing things TO our kids.
Stomach bugs, strep, colds, coughs, pneumonia, and flu season – every childhood illness can prove to be quite intense for many families, but perhaps most for those whose children have recently weaned (or are in the process of weaning) from their feeding tubes. So if you fall into that category, and you're navigating the world of sick kids who are mid- or post-wean, we have a few tips that might be helpful.