Friday, May 10, 2013

Food Aversions, Part 1

After I wrote this post, I recognized that this topic still causes some really big feelings for me.  A lot of anger.  This anger is borne of the fear that my child will never eat normally; that this daily struggle she and I (in particular, because I'm the one who spends the entire day with her) deal with has no end in sight.  So rather than publish, I saved it.  I thought it was prudent to sit on it a while longer and be sure I still wanted to say what I said in the way I said it.  However, we spent this week caring for a child who had to be hospitalized for several days because she would not eat or drink anything at all.  I want people to know a little more about what this actually is.  I hope someone looking for information about food aversions in kids will find something other than "oh, it's picky eating" and maybe have a little more compassion for a child in their life who deals with these issues.  So rather than sit on the post, I'm not only publishing it, but making it a two part "series".  First, my original post about our history with food aversions.  Soon, I will be posting part two, explaining how we landed in the hospital and what the future holds. 
I happened across a thread on a local forum recently about food aversions in kids.  I don't normally read the forum and have never posted on it, but I occasionally end up there when I'm searching for info about a local news story.  The title about food aversions caught my eye, so I opened up the thread.  A parent was asking for ideas about what to do next for their children who had been through OT and still suffered from aversions.  Allow me to paraphrase some of the enlightened responses: 

Putting a knot on their head works.

When I was a kid, you ate or starved.  "Root hog, or die".  Now every kid has a label and goes to therapy, I wish parents still controlled their kids.

Make food available, the kid isn't going to starve.

I was completely taken aback by the callousness and ignorance.  Some one suggested these people google food aversions, but that didn't seem to be changing anyone's perspective.  So I googled food aversions.  I came up with all sorts of stuff about picky eaters and did not easily find anything at all describing true food aversion. 

So, having sat with this for several days and still being pretty ticked off about it (and yes, defensive), I decided maybe it would be useful to someone at some point to read more about what a food aversion really is. 

To begin with, my oldest child was an extremely picky eater.  And it was just that, picky eating.  She ate fine as a baby and the ewwwww phase didn't start until she was about 2.5 or 3.  I had no problem telling her she could choose to eat her dinner or go to bed without.  We often had a "just try it" rule, knowing it may take many tries before a child willingly eats a food.  There was never any doubt that she would eat if she was hungry enough and was receiving adequate nutrients.  She now eats a variety of foods, including plenty of vegetables, happily.  I recognize picky eating and have a track record of handling it appropriately.

My youngest child is NOT a picky eater.  She certainly would not benefit from a knot on the head, and she WILL starve herself.  My youngest has food aversions.  Officially, they're related to oral defensiveness, unofficially I explain it to people as "sensory issues".  There is speculation an OCD or similar diagnosis may be in her future.  She would only nurse and refused to eat at all until she was nearly a year old.  Even then, it took some time in occupational therapy to get her to eat any significant amount of solid food.  She went to OT because she was not gaining weight.  There was a plethora of food available to her, even "treats" like ice cream, but she would not eat.  The OT explained to me that to her brain, anything in her mouth was a threat, that her gag reflex basically covered her entire mouth.  The solution to this problem had nothing to do with forcing her to eat.  It involved exercises to desensitize her, things like rubbing her cheeks with a washcloth; performing brushing exercises on her arms, legs and back; holding an electric toothbrush on her cheek, and eventually her lips and tongue.  Only then could we start to work with food.  When she allowed one or two things, we could use those as rewards.  A system of "work first": touch this new food, then you can have the one you want.  Touch this new food to your lips, then you can have the one you want.  Put this food in your mouth and spit it out, then you can have the one you want.  With time, she was able to have a desensitizing drink before meals (a mix of sprite, orange sherbert and lemon juice) that helped her try more things.  Around this time, she would beg for food and scream she was hungry, but be unable to bring herself to eat most of what I offered her.  She would try, she wanted to eat it, and then she would shudder and gag when it touch her hand or her lips.  Often, she would try more than once, sometimes overcoming her initial aversion and sometimes not. 

After a year and a half of hard work, she looks like a picky eater to someone who doesn't know us.  The people who wrote those comments, who live in this town, would see us in a restaurant and think we are terrible, permissive parents.  There are twenty-five foods she will eat.  That's if I'm listing things like graham crackers and animal crackers or waffles and pancakes as separate foods.  Six of those are different kinds of fruit.  None of the others could be considered healthy.  Most of those foods must be prepared a certain way (i.e. instant oatmeal for breakfast...heated up, then put in the freezer until it's cold).  And what if we just don't?  What if we just don't give her the foods she wants?  Sometimes she just won't eat.  If she's really hungry, she has a meltdown.  Not a 2-year-old fit.  This is my third child and I work with babies and toddlers, don't insult my intelligence and my experience by saying I can't recognize a fit.  A meltdown.  If you've had a panic attack, you might have some insight into what she seems to be feeling.  These can be immediately short circuited by either holding her in a certain way and rocking, or allowing her to shut herself in the dark pantry alone.  Or, you can deny her those coping mechanisms and it will escalate.  She certainly won't be eating.  She's not choosing not to, she can't.  I know she will refuse to eat because I have been there, when I was pregnant with her.  I likened my food aversions during hyperemesis to someone setting a plate of dog poop in front of you and telling you to eat it.  That is how disgusting and revolting it is.  And I was starving.  I was in the hospital because I could not drink water without gagging and heaving.  I couldn't force myself past the physical revulsion.  You know the food challenges on the old show Fear Factor?  What if you were starving and the things on those challenges were all you were ever allowed?  Would the knowledge that you had to force that down stress you out?  Would you eat three squares a day?  Would your feelings be valid, or would you deserve to be hit if you chose not to eat?

So no, my toddler with food aversions is not simply a picky eater.  She does not need to be physically punished or served only foods she can't even bring herself to touch.  She's worked damned hard to get to where she is and she needs parents that understand that and help her make more progress.

Part 2 is now up, explaining what it looks like when a child does refuse to eat or drink anything. 

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