Posts Tagged ‘tube feeding’

Discipline is different

November 3, 2012

a child looking up at his mother

image credit: mod as hell via Flickr

When you have a special needs child, discipline is different. It’s different from discipline for typical kids, but it’s also just different, every day, every moment.

For example, this evening, Chloe knocked her food all over my lap. She somehow has perfect aim when she’s trying to spill her food. Her tube feeding spilled across my white shirt, and the stain will probably never come out.

Of course I got mad. I snapped at her, told her to be careful, told her it was not okay to spill her food. Then I got up to change, and by the time I got back, I realized something–she was probably full. And she can’t make the food stop; it just keeps flowing until I stop it for her. Usually she can tell me she is full with her ipad. But not this evening, because we were using it to watch Netflix.

So I asked and, indeed, she is full, and I’ve taken away her only means of communicating. And now I’m punishing her for finding a way to get the point across. So I apologize and revise the rule: No spilling food unless that’s really the only way you can let me know what you need. And Chloe agreed. She’s very patient with me.

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Don’t ask permission; ask forgiveness (our adventures in homemade tube feedings)

May 15, 2010

When my daughter got a feeding tube at seven months, I decided I was going to give her “real food”–blended up grains, fruits and vegetables– instead of formula, which is made from soy or milk, oil, and corn syrup. I thought my approach was sensible–after all, kids who eat by mouth are allowed to consume all kinds of terrible things. Who could fault me for wanting to create nutritious meals for my daughter? Lots of people, apparently.

When we talked to a nutritionist at Chloe’s day care, she was skeptical. “Well, we used to do that all the time, back before we had formula,” she admitted, “so I guess it’s possible.” However, she kept pushing the canned formula on us, and when I gave her my recipe, she simply handed it off to an intern, who typed it into a computer program (leaving out one of the key ingredients) and sent me an email saying our recipe wouldn’t work, and she recommended canned formula. I responded with a nasty note about professional responsibility.

I spent the next couple of years searching for someone who could help us, but no one was interested. Doctors and nutritionists didn’t want to take responsibility for an unconventional approach to tube feeding. Finally, a mother on a listserv mentioned her son’s “blended diet” and I asked her how she did it. She responded with the information for another listserv, one that was dedicated to homemade tube feeding formula (I’m no longer a member–I searched for it in order to include a link, but couldn’t find it). From those parents, I learned how to create recipes and make blended food, but more importantly, I got the confidence to do it.

Three years later, doctors don’t flinch when I tell them Chloe gets mostly blended food rather than canned formula. In fact, they’re often impressed. She’s well nourished and growing well, and recently, a blood test revealed she’s not low on any major vitamins or minerals (except D3, which is a common problem for kids with CP). I love putting whole grains, fresh produce and nuts in the blender and watching them liquify, and Chloe’s digestion and appetite have improved since we switched to blended food.

If I had waited for someone to give me permission to make Chloe’s food, I would still be waiting.

Helpful Links for homemade tube feeding:
New Visions Article
Homemade Blended Formula Handbook
Blenderized RN Facebook Group

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