Posts tagged ‘feeding issues’
I have a picture on my bulletin board of a kid sitting at a high chair with spaghetti covering much of his head, face, and arms. This is my inspiration. C’s first feeding therapist told me if we ever got him to go as far as to smear food in his hair, we’d be done with her. I’ve sort of given up on the spaghetti in the hair fantasy, but I’d settle for C’s eating spaghetti with sauce (instead of shaped pasta dipped into ketchup – we couldn’t possibly put the ketchup on top of the pasta, of course).
Still, I’ve long had visions of C wearing birthday cake like most one year olds do on their first birthdays. Yet even on his first birthday, C didn’t touch cake, and he definitely didn’t eat it. It was no different on his 8th birthday, where he actually requested cupcakes like the other kids would have. I found gluten free, casein free, egg free cupcakes with frosting, and surprisingly, they didn’t taste like cardboard. He still wouldn’t eat them at his party, but he did blow out the candles. The next day, however, without the audience of 15 of his friends, he decided to try the cupcake…and proceeded to eat the whole thing.
I think 8 is going to be a very big year.
If I only knew the answers to these questions….
1.) Why he puts his hands over his ears when he’s eating something that freaks him out.
2.) Why he sleeps with his blankie wrapped around his head and/or neck. Even when it’s hot.
3.) Why ketchup is okay but tomato sauce is not.
4.) Why he hit his habilitation worker yesterday.
5.) Why he wants ants and spiders to crawl up his arm but he won’t touch a plastic cockroach.
6.) Why he sleeps upside down, sideways, and everywhere but where he’s supposed to, and what that means if he ever gets married.
7.) Why he asks for cardboard flavored rice crackers but I have to beg him to eat a cookie.
8.) Why he can sit still and watch hours of Thomas movies but can’t keep his bottom on the chair for 2 minutes of anything else.
9.) Why he can remember what food he tried to get each and every piece of his GeoTrax train set and in which order he received them, but can’t remember to put his shoes away. Ever.
10.) How he got to be so dang cute I don’t really care much about any of the above.
“I told you to eat your cookies before eating the rest of that chicken.” I can’t believe I just said that to my kid. I’m not sure those words, in that order, have ever been uttered before. After the words came tumbling out of my mouth, I wondered, “Did I really just say that?”
For C, eating a cookie, one that most of us would fine plain, boring, and not nearly sweet enough (translate organic, and minus most of the things that usually go in cookies, like sugar, eggs, butter, and flour), is much harder than the chicken he had for lunch. Giving him a piece of cake would be the equivalent of giving most people a fried rat in eyeball stew. This is life with a sensory-afflicted child who is terrified of food.
Yet all around are signs of huge success. C went to the dentist today, for the third time this year. The first visit included walking into the office, checking out the chair, and meeting the dentist – one of those cool, kids only dentists who specializes in children who fear the dentist (can I go?). The second visit involved actually getting in the chair, looking at all the tools, opening his mouth for the dentist, and allowing the sainted man to brush his teeth with a regular, dry toothbrush. This visit today included a brief but full cleaning, complete with a very small amount of unflavored cleaning paste. There were freaked out faces made, slight gags, and lots of looks to Mommy for positive reinforcement.
But he did it. Amazing.
C’s relationship with food is one I can describe with one word: weird. He’s not weird, but he thinks food is weird. Eating has been (and continues to be), without doubt, the biggest struggle he’s had. And it’s been the most challenging one for me as a parent. I remember details surrounding events relating to his relationship with food in vivid clarity, just like he remembers exactly what he ate to get which GeoTrax train part.
First was the “cheerio incident,” and another was the comment his 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 remains a simple phone call. C’s feeding therapist had insisted we get food allergy testing. We had the blood drawn and I felt quite smug that nothing would show up; C ate graham crackers, yogurt and drank cow’s milk with abandon, and in fact those were often the only things he would eat.
Then came the phone call from the nurse in our small-town doctor’s office. “He’s allergic to wheat, milk, and eggs,” she said a little too cheerfully. I watched him, slurping milk out of his sippy cup, and literally sank to the floor in tears. “What’s he going to EAT?” I cried, sobbing, wondering if finally, my child really would starve himself to death. Still not understanding the severity of C’s feeding issues, the nurse said, “Well, you’ll just have to take him off those foods and substitute other ones. No big deal.”
She actually said, “No big deal.” Really. Honestly, other than the trauma surrounding his birth, I couldn’t imagine much more of a big deal for this particular child. This was (and is) a child who could tell if we switch brands of baby food jars. Currently, he can tell the difference between different colored kernels of corn. This was nothing short of a nightmare, and I had no idea what to do next.
In my usual fashion, I dove into research and discovered that people were already recommending gluten (wheat, barley, oats, rye) free, casein (milk protein) free diets for speech delayed children. Even though autism wasn’t even on our radar screen at the time, it is a common first intervention for children with that diagnosis, and one that brings great success for some. So off we went, I took out milk first by adding a mere teaspoon of rice milk to his milk and worked up from there. Two weeks later his eczema was cleared up and some unmentionable bodily functions had improved.
Yet how and what C eats has changed everything about what a “normal” family does. Thanksgiving is irrelevant to him. Restaurants are places that hold absolutely no interest. My mother wishes she could take him to the ice cream shop for a treat. And in an attempt to look on the bright side of things, I have been slightly thankful that C is not interested in ice cream whatsoever, because it makes him not being able to have it far easier. He doesn’t want cake, candy, or other such things. He’s probably the only child in the world who has never tasted chocolate, pizza, or spaghetti sauce. He only enjoys Halloween because he gets to knock on people’s doors and chat with them; he gives all his candy to Mom and Dad (after, of course, sorting it by brand and color).
Years later, C is still GF/CF. Now I am too, due to my own recently discovered celiac disease and an allergy to milk protein. It’s been harder on me because I enjoy food so much more than C. Yet even though C’s feeding struggles are still enormous – to the point where I have come to accept the fact that he will likely always struggle with food – his health (and my own) is so vastly improved over those early days it’s hard to imagine ever going back to that kind of eating again.