30 days with Autism, Day 1

ORIGINALLY POSTED: APRIL 1, 2012

April is National Autism Awareness Month. On April 2nd, many of us endeavored to ‘Light It Up Blue’ to shine a light on autism, the fastest growing learning disorder in the nation. I thank you for that show of support. On April 1, 2011, I put myself to a challenge. I wanted to post (on Facebook) one thing every day, one thing that I have learned from autism. So many times we hear about the effects of autism on the child, sometimes we hear the effects on the family, the hardships generally. All too often we dismiss the things that don’t pertain to us directly. It doesn’t touch our little bubble, so we can give our dollar at Toys ‘R Us or buy that light bulb from Home Depot and not think anymore of it. It’s easier to do that, I’ll admit, I’ve done it too.

If you know me, you’ve been touched by autism. If you know my husband, you’ve been touched by autism. If you know my mother, in-laws, aunts, cousins, uncles, siblings, friends, grandparents, guess what? You’ve been touched by autism.

I set out to deliver into the world 30 things, no, 30 lessons I’ve learned as a result of having a daughter on the spectrum. Not every day is roses. More often you can’t see the buds for the thorns, but that’s life. After a few days, it got harder to keep up with my posts. Some days made it hard to see the blessings. After that first week, I decided to compile the list into this essay. I have no idea how this will end, but feeling that some of my lessons need further discussion, I present to you, friends, family, perfect strangers,

MY THIRTY DAYS WITH AUTISM.

April 1st: Autism has taught me that macaroni and cheese smells like flowers but that most foods smell like cotton candy.

My daughter has a severe issue with textures, particularly where food is concerned. This is a child who wont eat spaghetti with sauce of any kind because it’s “mud”. She wont put jelly on her peanut butter sandwiches because you can’t separate the peanut butter from the jelly. She wont dip her carrots (raw, never cooked) into ranch or ketchup or anything. If there is a chance to make a mess, she wont eat it. If it looks wet, she wont eat it (hence the “no cooked carrots” rule). My daughter loves to learn. She is adventurous, at times, and at the time, had recently discovered an affection for “Dino Dan” on Nick Jr. He conducts experiments like a real scientist to determine whether or not a dinosaur did something, why it was done, or how it was done. It’s all fiction, but it made her see the value in science and for that, I will always be grateful. K wanted so much to be a scientist that we took her to the Smithsonian that year for her birthday weekend. She had a blast, but it gave me an idea. If she could be a “real” scientist, what could we get her to do. Our biggest issue was food. A child who wont eat anything can’t be taken out to practice eating in public. A child who wont eat anything is a constant worry for a family trying to make sure they stay healthy. One night in January 2011, we were having a particularly hard time getting her to eat. I had made macaroni and cheese, knowing full well she’d never eat it (the macaroni touches the cheese, now doesn’t it?!). We put my son to bed and I sat with her, just me and her, in the living room of the house we rented in Virginia. We turned off the tv, very low lighting, and the most calming voice I could muster after a long day. Just me and her.

Sitting opposite of each other at our coffee table. This is where the anxiety begins. K wont even put the macaroni on the fork; she didn’t want it to get “dirty”. It was a fight and a half just to get her to hold the handle of the fork in her hand. It was a big step just to be able to do that. “You don’t have to eat it,” I told her. “Just hold the fork in your hands.” She seemed to calm a bit. This is where we got creative. “Let’s be scientists,” I said, not really sure what that meant but since she’d been studying the five senses at school, I figured it was worth a shot. First we used our eyes to examine the look of the macaroni on the fork. Then our ears were used to see what sounds it made, if any at all. We then used our noses to smell the macaroni. This was when I found out that macaroni and cheese, looks cheesy, sounds like quiet and smells like flowers. That was as far as we got that night. But in the weeks following that January evening, we managed to get to touching the “slimy” macaroni and cheese, and eventually moved on to licking it. This might sound odd to you, but for the mother of a child who had, at age five, never eaten macaroni and cheese, it was the biggest miracle we could ask for. She had licked the macaroni, with cheese on it! Something she had never done before and it was the closest she’d ever come to eating it. The first time she ate the macaroni was a blessing. She only had five macaroni noodles before we called it quits for the night, but it was the greatest achievement and she was so proud of herself. After that, we knew we had gold.

We have used our five senses many times since then, and in the year since we started, we’ve had great progress in expanding her severely limited food preferences. She eats macaroni and cheese from most restaurants now and with much success. She has begun to eat pizza, without me removing the cheese, and has even started to adventure into sauces. She still wont eat yogurt, or jelly, but will let me put minimal sauce on her spaghetti (though she still prefers it quite plain when eating out), and on occasion has dipped her pizza crust into a small amount of ranch dressing. Many foods are still off limits to her, some she wont even allow on her plate (garlic bread, cauliflower, yogurt), but some she’s gotten to lick broccoli and edamame. Being a scientist, she has had the chance to focus on one sense at a time and slowly advance closer and closer to eating a food. If she doesn’t like, that’s fine. We can always try again another day. Many times though, she isn’t sure if she likes it or not. Those foods we push hard in the days and weeks to come to give her more chances to decide. She doesn’t eat meat, but we’re working on it and I hear, at least, that is pretty normal.

This method may not work for some kids, but I would encourage you to try. Take it step by step and don’t push farther than they are willing to go. My experience, with my son in particular as he is very strong willed, my experience is that kids just want control. If it’s their idea to eat it, they are more willing to do it.

Step 1: what does the food look like? Don’t let them use words like “yucky”, “gross” or “eww”. These don’t help their language development and encourage a negative view of food. I want to know, when you look at the food on the plate or fork, what do you see? Is it shiny? Does it seem wet? Dry? Brown, yellow, green?

Step 2: What does it sound like? Most foods wont sound like anything, but again, encourage your child to use their words to describe the quietness of the food. Does it sound like a windy day? Does it crinkle a little when you hold it near your ear?

Step 3: What does it smell like? This can be overwhelming for kids with extreme sensitivity to scents, but if your child is in the lead, it can be quite an experience for them. I heard things like “It smells like the beach.”, “… like dog poop.”, and “… like boy.” (I have no idea what that means, by the way.) Regardless of what they say, encourage their words and try to get them to move to the next step.

Step 4: When you touch it, what does it feel like? Is it cold, hot, wet, rough, smooth, lumpy, mushy? What happens when you mash it with your fingers? Does it mush or does it stay firm? Now this was the step we often lost our daughter on the first few times with a new food. She has a severe aversion to getting dirty and doesn’t like to be messy in any way. She has mastered the art of eating a dripping, chocolate, ice cream cone without getting any on her at all! Encourage them, talk positive and if they don’t want to do it or they start to get anxious, STOP! Food is something to be enjoyed and if it’s not fun for them, they wont want to eat.

Step 5: What does it taste like? This step can be done in many ways, simply licking the food, placing the food on the tongue and closing the mouth, or straight to eating it. You know your child better than anyone, attempt this step with their preferences in mind and don’t push them too far too fast.

Through all the steps, continue to encourage the use of words, or the use of PECS. Use this not only as a fun way to examine and remove the fear from food, but as a language building exercise. After 5 years of trying, my daughter finally ate macaroni and cheese and it smelled like flowers.

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3 thoughts on “30 days with Autism, Day 1

  1. nordling says:

    Great post. I admire your obvious creativity.

  2. Fawzia (from Pakistan) says:

    Thanks for sharing. Lovely post. The trick is to be consistent and not to lose hope. Some days are hard but when they make is across the gap it is the best day – and this way we get many ‘best’ days and not a year full of average days 🙂

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