Take C to the feeding clinic, they said. It’s the best place for him, they said.
If he doesn’t sit at the table, don’t give him food at all, the feeding clinic said. He must not leave the table until he touches the food to his lips, they said.
Well I say, “That doesn’t work for my child.”
Yes, in an ideal world, we all would sit down together for meals at the table. In that ideal world, C might want to get down from the table but would comply when I said, “Touch your food to your lips first!”
This is what reality sounds like:
- “No, I don’t eat at table!”
- “I eat at couch.”
- “I help you, Mommy.” (meaning, help feed me, Mommy, because I don’t want to touch my food)
This is what reality looks like:
- C looks at a food that makes him nervous, turns his head and runs away.
- A food that makes him uncomfortable causes a sensory meltdown when he’s asked to touch it to his lips.
- There is absolutely no way I’m forcing my son, in a sensory meltdown, to touch his lips to the food that is causing him extreme anxiety. In my opinion, that’s cruel and borderline abusive.
- If he doesn’t want to sit at the table and I don’t let him eat elsewhere, he just wouldn’t eat at all. Why? Because the kid isn’t stupid – he knows he’s going to get a tube feeding regardless of his oral intake.
Our “goal” for the last two months was to get C to eat at the table. He was doing great for a while, but now he usually refuses to eat anywhere but on the couch. His speech therapist and I have come to the conclusion that some sensory event happened for him while he was at the table that has caused him to avoid it.
When C first received his g-tube, he was malnourished and underweight. His BMI was off the bottom of the chart. The doctors and dietitians prescribed Pediasure and, while I didn’t like the idea of all the sugar and junk in it, I obliged because we needed to get his weight up quickly. Now, he’s in a healthy range and he’s having a lot of behavioral outbursts. Those outbursts are mainly directed toward Baby Jo. While I am unsure how much of these outbursts are related to his Sensory Processing Disorder, I have come to the realization that he is receiving 63 grams of sugar daily via his g-tube.
Outrageous, no? I mean, how can his little body metabolize that much sugar?! It’s ridiculous. Once I did that math and made the connection to his behavior, I realized that something must change. I’m not going to continue pouring sugar directly into my toddler’s stomach. I’ve decided to try a blenderized diet of whole foods. This way, I have control over the ingredients he gets. I can give him healthy, natural foods like vegetables, fruits and oils. Now, I know this is against the thought of the feeding clinic.
They want C to sit only at the table to eat. They want him to eat more orally before they reduce the amount of Pediasure he receives through the tube. These things just don’t seem right to me. First, I want my child to learn to eat. I don’t care where he does it – we’ll work on that later. Second, how will he ever be hungry enough to eat more orally when he’s being tube fed so much? He isn’t getting the opportunity to feel hungry for incentive to eat orally.
It’s all backward to me. I’m working on finding a dietitian in the area to help me figure out a blenderized diet that will provide him with the proper balanced nutrition. He will be working with his speech therapist and occupational therapist for his Sensory Processing Disorder, which is the hurdle to eating orally. We’ll keep seeing a GI doctor for his gastroparesis. But this feeding team, the one that was “the place where C needs to be,” that just doesn’t work for my child.