Posts tagged ‘sensory 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.
Every once in awhile, I am reminded of how challenging it is just to be C. He courageously tackles demons most of the rest of us don’t even consider a threat. To face those fears on a daily basis requires a certain kind of strengh above and beyond the normal.
C’s big fear? Food. It’s all tough for him, from the earliest retching when we’d open the fridge to now swallowing the gag when he looks at unfamiliar foods. If he could just skip eating completely, he’d probably be a much happier kid, but nature calls, and eat he must.
Last week he helped his class win a pizza and ice cream party, and he was probably the most excited of his classmates. Yet he doesn’t eat pizza and ice cream – can’t eat pizza and ice cream, but more telling, doesn’t even want to eat pizza and ice cream. He’s never had cake, pie, pizza, soup, casseroles, or a salad.
The night after the party, when he asked if he could try some ice cream, I jumped on it. He wanted to try the sorbet in the freezer, and I popped out a spoon. Try it he did. What most people won’t understand, however, is the massive aligning of the planets it took to actually get that sorbet in his mouth. No setting down a bowl in front of him. First he had to look at it, and I was careful to cover up the chunks of fruit on one side. He then had to smell it, with my enthusiastically stating how much it smelled like strawberries, his favorite. I got out a spoon, scooped out less than 1/8 of a teaspoon, and slowly glided it into his wide open mouth so as to ensure it didn’t touch his lips.
Then started the reaction. Eyes scrunched shut fighting back tears, jumping up and down, and what I call the “closed-fist hand flap” motion to distract himself. This was followed by his covering his ears. This all took place in the span of the three seconds it took him to swallow the sorbet.
This was a mild reaction, believe it or not. I immediately responded with, “Wasn’t that great? Want more?” Sure enough, he did. Five more spoonfuls, and a request to have it for breakfast the next morning.
For whatever reason, I am usually the one getting up with C in the middle of the night if he needs something. “How did you sleep last night?” Husband will say, usually followed by my tired litany of how many times I got up for C, followed by my by then awake enough to be astounded. “You mean you didn’t hear him screaming over the monitor???” I’ll say, incredulously. Truth be told, Husband is great about doing the early morning “I NEED A WIPE!” hollers that we get a few mornings a week (that’s another post altogether). Frankly, I envy Husband’s ability to sleep through a hurricane, tornado, hail storm, ambulance in the front room, coyotes outside our bedroom window, or the sounds of the high school band wafting up to our neighborhood on football nights.
But every once in awhile, C will specifically call out for Daddy. Husband must be in tune to his own name, because when C called “Daddy!” one wee hour of the morning this weekend, followed by a more frantic, “DADDDYYYY!!!!!!” he managed to stumble out of bed. I blissfully rolled over, grateful that whatever was going on, it was clearly a Daddy issue. Those usually involve needing bandaids in the middle of the night for an owie, either real or imagined (Daddy is a much better bandaid administer-er, a talent I have acknowledged over and over to C in the hopes that some of those middle of the night owies will fall to Husband instead). Yet apparently there is a new skill C feels Daddy possesses: Bug wrangler.
“THERE’S A BUG IN MY TOILET, DADDY! GET IT OUT!”
Our first day at the beach (with Ga) and our last day at the beach. Although he loved it from the first moment he saw it, it overwhelmed him (thus the hand flapping and splayed fingers). But by the end of the trip, he was almost completely comfortable. He still didn’t want to walk around barefoot or get into the cold water above his knees, but everything else was true love!
I write a lot about C’s eating challenges, and it’s partly because it is one of the biggest struggles we face, but it’s also the most unusual to people who know nothing about it. It’s the kind of thing you never think about unless it’s a problem. And if it’s a problem, then it’s usually an overwhelming problem. People don’t understand why we can’t take C to a restaurant, and I usually let them think it’s his dietary restrictions that keep us away. But that we could work around. It’s the more incomprehensible issues that make restaurants problematic. For a child who can tell the difference between brands of peanut butter, won’t eat a raspberry if it’s unusually large, and eats mostly only single ingredient foods, restaurants are pretty much inaccessible. C will eat one particular brand of deli meat chicken, but putting it on bread for a sandwich makes it an entirely new food, one that requires much effort to add it to the list of things C will eat. And putting it together with avocado or tomatoes, some of his new “preferred” foods, is even more forbidden.
You can therefore imagine my surprise when he requested a burrito for dinner tonight. Husband and I throw all kinds of things on tortillas, so it’s familiar to C, but his actually eating a burrito is something I didn’t expect for years to come. He won’t eat salsa (too many ingredients and a combination texture that is distasteful to him), and mixing beans and rice would certainly be taboo. Hesitantly, I asked him what he’d like on his burrito, expecting him to give me a single ingredient. “Guacamole (his word for avocado), tomatoes, rice, beans, salt and pepper.”
Hiding my surprise, I quickly whipped up a little burrito, with his supervision, and took it to the table. He remained standing, which is his latest comfort spot when faced with a new food. I always envision his body activating the fight or flight response and him sprinting off somewhere safe, but I promised him he would be okay, and down he sat. Teaching him how to hold a burrito is another exercise completely, so instead I held it with him and off he went. It fell apart on the plate, something I had to warn him about in advance (messed up food is generally unacceptable), but he kept at it anyway until the entire thing was gone.
These are the things we celebrate around here. I doubt that C’s eating something new will ever be something we take for granted, although it is becoming slightly less dumbfounding when it happens as of late. Yet it is always cause for patting ourselves (and C) on the back. All those years of working patiently in feeding therapy might have paid off after all. He’s come a long way from barely being able to tolerate a new food even being on the table, to moving it closer to him, to it being on his plate, to touching it, to kissing it, to licking it, to finally taking that first bite. A process that has finally come down to this. A burrito. But not just a burrito; a cacophony of tastes, textures, colors, smells, and sights that has been thrown together and all mixed up. Just the way life is supposed to be.
Oh, french fry, dear, beloved french fry. I remember Mommy buying you, not once, but a million times. I remember the drive from the “M” to Ga’s house, and how Mommy and Ga would look at me in the rear-view mirror, waiting for me to take the plunge. I held the bag many times, but never looked inside. Then one day I remember touching one of you, and finally holding one of you in each fist. I then opened my mouth as wide as I could so you wouldn’t touch any part of me as I brought you toward my face once, twice, again and again. It was a few zillion more stops at the M before I could touch you with my tongue. Oh, salty slice of potato, once I started I couldn’t stop. I licked but wouldn’t bite, and by the time we got to Ga’s house, you were wilted in my hands. One day, I decided to take the plunge. I bit you. I ate the whole salty stick. But just one. And then I wouldn’t touch you again for months. Then I did again, by the zillions. I wanted you every day, and now we’re the best of friends.
Oh, beloved french fry, how do I love thee? Let me count the ways.
“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.