Sometimes people say insensitive things. It’s generally not intentional, and I prefer to assume everyone has good intentions at heart. In the spirit of those good intentions, I would like to differentiate between what constitutes needing a g or jtube versus being a, “picky eater.”
Picky eaters are a struggle. Their parents spend a lot of time encouraging and coaxing them to eat, and they frequently refuse to try new things. At the end of the day though, the child does eat. Their food stays in their stomach. They receive enough calories and nutrition to grow. While frustrating, they can generally be expected to at least pick at their food if their belly is empty, provided you can find something that appeals to them. Since they do eat, there are usually a few fallback foods they’ll consume. There’s no expectation that they would truly starve to death if you didn’t produce the perfect series of meals (though it may feel like it sometimes).
The difference between that and needing a g or jtube is that tube-fed children really would either starve to death or be so nutrition deprived they wouldn’t be able to grow if not for tube feedings. At the table they have the appearance of a picky eater, from start to finish. They refuse to eat foods provided. Additional foods are also rejected. When pressed, they may take a bite or two. The experience displays everything you would expect from a particularly challenging meal time with a picky eater. For tube fed children, it’s like this every meal. There is no food you can offer that they’ll gobble up (or if there is, it’s nutritional value is extremely limited and it isn’t viable to be a primary source of nutrition).
Every challenge we, as parents, face with our children feels like a mountain. The mother with the picky eater is no less stressed than the mom whose child won’t eat. This isn’t about whose problem is worse. All problems are bad and emotionally difficult. It’s important, however, to know the difference between a child being picky about eating and a child that won’t eat enough to survive because comparing one to the other directly can send a devastating message to the mom whose child is tube fed. For example, “My child went through that too. He seemed to hate everything I offered him!” The intentions are likely pure, but the message it sends is that there is something the mother of the tube fed child can try that she hasn’t which will resolve her child’s need for the tube. Your child, after all, managed just fine without one even though they were going through what you view as the same experience.
In the vast majority of tubie moms this isn’t the case, and the implication is painful. There is, after all, no way to prove you truly have tried everything. You’ve followed the recommendations and suggestions of every feeding therapist you’ve seen and tried almost every formula under the sun to get your child to eat SOMETHING and gain weight. Even so, you still can’t prove that there isn’t something out there that might work.
Some well-meaning individuals also offer suggestions of how a tubie mom might get their child to eat. Believe it or not, after the first few months mom has heard them all. Not only that, but she probably tried them all before the tube was even placed. This is difficult on the tubie mom for the same reason mentioned above. It implies you have some information she doesn’t about how to get her child to eat, despite multiple professionals which specialize in getting children to eat being unable to do so.
The best thing to do if you encounter a mother whose child is fed by tube is to simply discuss something other than getting the child to eat. There are a ton of other topics out there, and they’re not nearly as difficult for the tubie mom. If you have the name of an excellent feeding specialist who works specifically with her child’s age group, by all means share. Otherwise, the tubie mom will thank you for not having to re-visit that same agonizing conversation she’s gone through over and over again about how if she just did, “x, y, and z,” her child would be better.
Well written. This will really help other parents who may not fully understand your struggle.
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Thank you! I’m hoping it will help not only me, but others in the special needs community as well. Increasing awareness of these types of things would be amazing.
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I’m sure there are others who are reading your words right now and feeling less alone ❤
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