Something to think about

February 29, 2008 at 8:37 pm 9 comments

     C’s feeding issues are especially difficult for people to grasp. The best way I’ve found to explain it is to say he is absolutely terrified of food. The thought of food can bring up a fear in him so primal it’s hard to imagine it wasn’t born in him. Yet I suspect the trauma of being re-intubated several times as a newborn (he would cough the intubation tube right out as a NICU baby, something the nurses found amazing), combined with a highly sensitive sensory system, a poorly developed tongue, and motor planning problems are the likely culprits.

     The issue first presented itself when he was nine months old. A well-intentioned occupational therapist gave him a cheerio, his first encounter with solid food, and he immediately gagged, choked, and vomited. It was downhill from there. Ultimately we found a feeding therapist (who would even know these people existed unless you needed to know?) and we started seeing her immediately.

     Apparently, feeding is one of the most all encompassing things our bodies actually do besides sex. All the senses are engaged, our hands must be able to find our mouths (no small feat for someone with trouble getting messages from the brain to the hands), our tongues must be developed enough to move the food around, and we must be able to swallow. When you think of how all these systems work together for us to actually eat, it’s amazing we can all do it.

     Many, many people have said to us that we should let C get hungry enough and then he would eat. AHA! If only that were true! There’s a small subset of children who will actually starve themselves to death rather than eat a food that scares them. It’s difficult for someone who has children who simply just EAT to grasp this. C is not a picky eater, but rather the texture, flavor, and newness of an untried food triggers an actual physical reaction that we all know as the “fight or flight” response.

     When we started feeding therapy, we were at war in Afghanistan, and I remember seeing pictures of children who needed help in so many ways. I asked our feeding therapist what would happen to a child like C in a country where he couldn’t get this kind of help. Her answer, both abrupt and painful, was, “He would die.”

Entry filed under: autism. Tags: , , , , , , , .

It’s broke, so how do I fix it? High, low, and somewhere in between

9 Comments Add your own

  • 1. T$  |  February 29, 2008 at 9:40 pm

    hmmm. makes me think he more related to j than me.

    Whatever you say, Mr. won’t put his feet in sand or grass… 😉

  • 2. awalkabout  |  February 29, 2008 at 9:49 pm

    It’s true, as much as dealing with all the alphabet people is painful and tedious and…mind-blowing…. the alternative is not pretty either. 😦

    Definitely the lesser of two evils. And “alphabet people” has become part of my vernacular now. LOVED that post of yours. Um, if I could figure out how the heck to link to it I would. But you are on my blogroll, so there’s at least that link. It just makes me feel so fortunate that we have the ways and means to provide this child the necessary care. I shudder to think where he’d be without early (and continued) interventions.

  • 3. T$  |  March 4, 2008 at 3:56 am

    and why would anyone want to put their feet in sand or grass? that’s just silly.

  • 4. jesch30  |  March 4, 2008 at 8:49 pm

    especially such pristine feet…

    No comment.

  • 5. awalkabout  |  April 5, 2008 at 8:52 pm

    You know this post would be great for the blog carnival. Could you submit it???

    Will do! Since I’ve now figured out how to comment on a comment, I think I can handle submitting to the blogcarnival!

  • […] when our path seems darkest, there is always an upside we need to cling to. Darcy presents Something to think about « posted at What We Need, saying, “Food for […]

  • 7. Food for Thought « What We Need  |  June 1, 2008 at 9:26 pm

    […] first feeding therapist stated about kids like C dying in other parts of the world, both described here. But the most confusing, the most powerful, the most educational, and the most life-changing […]

  • 8. Awalkabout’s Weblog  |  June 9, 2008 at 5:22 pm

    […] my friend says of her child with an eating disorder, in other circumstances, our children might not […]

  • 9. You are what you eat « What We Need  |  March 9, 2010 at 6:49 am

    […] If you don’t know about C’s eating challenges, see here and here and here. It’s been arguably the most difficult part of his journey […]


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