Parents whose children have struggled similarly to mine often face significant trauma triggers, and sometimes, our response to these triggers can unnecessarily stall the progress we make in weaning our children safely from feeding tubes. The minute we hear a cough or baby cry, the second there’s a gag, cough or hiccup – panic sets in. Because to a medically complex kiddo, every scenario feels like a medical emergency, even if it isn’t.
When one of your kids is tube-fed or recently weaned, it’s easy to overlook the other kids at your dinner table, or forget that safe and joyful meals are just as important for non-tubies as for tube fed kids. I learned this the hard way – that there are a few things to be aware of when your tubie is not an only child.
I learned how to let go of my anxiety-ridden control tactics, and my daughter found her appetite and learned to eat happily and independently. But that took time, patience, and a lot of help. And looking back, there is one thing that I would tell that tired, frustrated mom who skipped Thanksgiving dessert to cry in the bathroom.
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.
As a kid, I was the designated “picky eater” of the family. Every family has one, and we all know who they are. My mother would often introduce me to new people as “her picky eater” and the one “whose best vegetables are ketchup and pumpkin pie.” I would slink off with the kids, doing my best to disappear until the inevitable dinner bell rung and I'd have to endure the humiliation of being the picky eater in front of strangers.