Let him eat cake

     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.

We all scream for ice cream

     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.

     Brave kid.

Missing in action

     Tonight while C was taking a shower, I decided to try to expand on the things he does for himself while bathing. He’s pretty good at washing his belly, but that’s about it. I told him to wash his arms, legs and bottom crack. “What crack, Mommy? What are you talking about?” I reached behind him and touched the top of his derriere to see if he could feel what I was trying to explain. Silly me, have I not learned anything? This is a kid whose body awareness ranks right up there with, well, I have no idea, but suffice it to say HE has no idea. He still misses ankles and elbows most of the time I ask him to find them, and calves are baby cows, don’tcha know?

     So as I watched him trying to look at his bottom, eerily resembling a dog chasing its tail, I had to laugh. Round and round in circles he went in total confusion. “I don’t have a crack, Mommy! People like me don’t have them! Is it from a gun? WHAT ARE YOU TALKING ABOUT, MOMMY?!?!” Nothing I did could convince him. I showed him my own (yup, dropped trou right then and there – I have no modesty left since becoming a mother), and held him up to the mirror backwards to see if he could see it.

     Nope, no crack. Nuh-uh. No way, no how.

Wake up call

     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!”

Nearly Wordless Wednesday

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!

A little Thanksgiving miracle

     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.

Ode to a french fry

     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.

Just when I think I can’t take it anymore

     I often marvel at the timing of things in my life as C’s parent. People compliment me on the positive spin I put on autism, and I am often reluctant to express great sadness or frustration. Yet lately, sadness and frustration have been our norm. It’s as though we’re living a lie. To all looking in from the outside, everything probably looks great, but at home we’re falling apart. So near tears am I at so many points of the day I find myself grateful for a respite in both my own work and C’s school.

     C’s behavior the last couple of months has been horrendous. He’s Jekyll and Hyde from home to anywhere but home. Fits, tantrums, defiance, and completely uncontrollable behavior have taken me to the end of my rope and convinced me that I am quite possibly the worst parent ever to roam the Earth. I’ve always said I could understand how the divorce rate for parents with children with autism is so much higher than the national average, but I never really got it until now. It’s not that we differ in our opinions on what to do for/with/about C, but rather, by the time we’re done dealing with him, we have no energy left to give to our relationship. I’m thankful, through these difficult periods, that we are so fully committed to our marriage and to C. It probably allows for a certain amount of taking each other for granted, but I don’t think either one of us is up for tending to each other’s needs at the moment.

     Yet just when I don’t think there is any light to be found in this tunnel, something happens to remind me it’s not completely dark here in my life as C’s parent. As I watched him tonight, miraclulously shoveling fistfulls of salmon and rice (two foods he’s never had) into his mouth, not gagging or covering his ears with his hands (shaking them instead, but we’ll take that), I was given a bit of happiness to temper everything else that’s been going on lately. I was reminded that I do enjoy being a mother while he read me a book, his voice full of inflection, clarity and excitement. His behavior made me revel in the entertainment of dealing with “sometimes almost typical” instead of “creature from the wicked planet.” Even if tomorrow is back to terrible, I will have at least had this brief moment of joy that will help me get through to the next moment of joy. And it is for that I am thankful this night.

Days bygone

     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.

It’s all about muscles

     Someone showed C muscles recently, and tied muscles to protein. I’m not sure if he watched the weight lifters on the Olympics or if he saw a picture of Popeye, but enter the latest obsession: protein counts in food. Despite my attempts to talk to him about a balanced diet, he really only wants to eat high protein foods. It has nothing to do with cravings, or what his body needs, but rather with muscles and numbers. 

     This is C’s latest in a long stream of obsessions having to do with numbers. The idea of each food having a different protein content is very appealing to him. It makes sense of his world – he can compare and contrast and order. He’s starting to notice the other numbers on the labels too. Tonight he asked me what “deriby filer” is. Slow Mommy, but it took me a few minutes of questions to figure out he was talking about “dietary fiber.” Not wanting him to go overboard on that one, I again brought up the need for balance in his foods.

     Perhaps I can use this latest obsession to help him both gain weight and eat foods he has feared in the past. The “failure to thrive” diagnosis that seems to follow him around like a lost puppy could maybe blossom into something resembling more than a big head atop a skinny body. If I could mock up a label for ice cream that reads “50 g protein” on it I might be in business. Or maybe I could turn macaroni and cheese into something desirable by giving it a very high protein content. Cakes, puddings and cookies? Yup, high protein. Eat all you want, kid. Rice crackers that he loves but have zero caloric value? Nope, C, low protein content, don’t eat those.

     I think I might be on to something.