Posts tagged ‘sensory problems’
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.
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.
When C was 18 months old and still not walking, I remember people actually saying to me, “Be thankful! You don’t have to chase him around.” That irritated me to no end, but in such a weird way they were right. A new kind of tired came along to replace the “tired with baby” phase. Then came the “must follow the child around” phase. That was replaced by another, and another and another.
I am happy to be beyond some phases. I remember the one where C was too easily overstimulated to go into a store of any kind. We were living in a weird little town that happened to have a huge and wonderful grocery store. C was just shy of 3, and I decided the time had come to figure out how to get this child in a public place. “He just needs exposure,” my Mom, the power-shopper, said. “He can’t handle malls because he doesn’t go to them!” Ah, so clueless were we before the word “autism” entered our lives.
Off I went, not to the mall, because we didn’t have one, but to Fred Meyer, the equivalent of Target with groceries. The store was only a few moments away by car, which turned out to be rather fortunate. We made it to the outside line of carts. Complete and utter freak-out. We went home. An hour later, we went back. We made it to the carts. I lifted C up to put him in the cart. His feet touched the cart. Complete and utter freak-out. We went home. This went on and on, getting a bit further each time. I finally gave up for the day when we had the success of C’s actually being in the cart, just inside the front door. The whoosh of the automatic doors opening behind us triggered yet another melt-down, so home we went for the final time.
The next day, I was at it again. We made it inside the doors, muzak playing on the speakers, random announcements being made, lots of things to look at and overwhelm. Eventually, after many trips back and forth between home and store over many days, C grew to tolerate it because of the numbered aisles and the lit exit signs everywhere. The problem then became that we had to go down each and every aisle, in order, every time. We could never just run in for just one thing.
Yet I was determined. Determined to teach C he could handle something he didn’t like, with gentle prodding and support from me. I simply refused to allow him to completely close himself off to something so basic for the way we live. There are still some things we don’t push; we know restaurants will never be a happy place for him, so we just don’t go. There are some “normal” things that will never be normal for him, and we accept that.
I am so glad to be beyond that particular challenge. There certainly are new challenges that come along to replace the old ones, but as I look back I’m glad the old ones are gone. It represents not only progress, but the reality that I’ll never allow myself to admit that I’m not up for this challenge while it’s happening, whatever it may be. No doubt it will be difficult as we go through it (contrariness is the latest), and there will be moments of utter despair, but it will be clearer in hindsight because only then will I allow myself to admit, “Whew, I wasn’t sure we were going to get through that one.”
Never during. Only after.
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.
Today we participated in an ill-fated adventure. One that lasted too long and was too loud. We left, C in tears and me being frustrated that the world is so difficult on him. What were we doing, you ask? A Rolling Stones concert? A rocket blast-off? Times Square on New Year’s Eve? Nope. Nothing quite so dramatic. We just went to see a movie.
C isn’t into movies, although I thought we had found one that might change all that. The only movie he sits through is a feature-length Thomas the Train movie. Mom and I took him to Curious George several years ago, and even though we managed to get him to stay for the whole thing, he was far more interested in reading the credits at the end than watching the movie. Mom and I were completely exhausted from the constant re-directing and re-focusing we did. Silly us, that was back in the days where we thought if we just did typical things with C, he’d be interested in typical things. It wasn’t an effort to make C typical, but rather to show him that some things he might not expect to be interesting actually are. How mistaken we were, how naive; I look back at myself then and laugh much as I do at my high school hair-do pictures.
Yet Aunt J and Uncle T went to see Wall-E, and since C wants to do most anything they do, he wanted to go see this movie. So off we went. I had high hopes, as he has grown up so much since we saw Curious George, and I thought perhaps he was ready for a movie in a theater. Apparently, however, there is a weight requirement, given his inability to hold the seat bottom down with his weight alone. I settled in for a long 2 hours of holding the seat down for him, so ready was I for him to see a real movie.
Mistake number one was going early. By the time the previews started, he was pretty much done with the whole experience. When the lights went down and the previews began, he was completely done. I watched him watch, and it was like being in a 3-D movie – his head snapped back every time something blasted onto the screen, and while this probably had something to do with his vision issues, it probably had as much to do with the pure shock of such live, larger than life action.
He lasted about 10 minutes into Wall-E (which looks like a delightful little movie), before he decided it was time to go. An understanding manager refunded our money, and home we went to some in-house Thomas viewing, where we can control the volume and the light.
The highlight, however, much to my thrill and excitement (sarcasm intended), was the preview for Beverly Hills Chihuahua. Through covered ears, curled up into a ball so only his nose and eyes were sticking out, C laughed out loud at the preview for it. I see movie number three in our future, and I only hope Uncle T and Aunt J are in town to take him to that one.