LIFE IS A SPECTRUM

peas

You have no idea what I'm willing to do for my kids' nutrition.

If you'd seen me in Sonny's Barbecue at lunchtime recently, you would have felt sorry for me. You might have thought that the whitest girl on the planet was auditioning to be one of Beyonce's backup dancers ... in a barbecue restaurant, for some reason.

But my goal wasn't VH-1 stardom. It was to get my son to eat chicken.

When my kids came along, along with the last shreds of my career and my pre-baby body went any sense of shame. I'll make an idiot out of myself to end a tantrum and get a smile. And to get Billy to eat? Well, let's just say I've ruined barbecue chicken for a good portion of Northwest Florida. Billy is the only person alive whose appetite is increased by the sight of my booty dance.

I know some of you are probably thinking, "Maybe you could try just being a better cook." But since that isn't going to happen, we've been going with the dancing.

It's working, though. Last night, Billy ate an actual serving of PEAS!

I'm not talking about peas disguised as something else, peas mashed up and hidden under something else, peas baked into muffins (yes, I've actually tried this – don't recommend it). I'm talking about real, honest-to-goodness straight-out-of-the-can (do they come any other way?) green peas.

S_billyartraisins

Favorite food: raisins

Like many parents of autistic kids, I have become semi-obsessed with food over the past few years. Heck, who am I kidding? I've been semi-obsessed with food most of my life.

My recent food obsession has less to do with fitting into skinny jeans and more to do with seeing that my son gets slightly more nutrition than what is contained in a Pop-Tart.

When Billy was a baby, he would eat anything. About the time he was supposed to move up to chunky foods, though, he started rebelling. Looking back, it should have been a sign, but we just thought it was hilarious when he would suck the cheese off macaroni and spit the noodle out.

He got to the point at which he'd eat macaroni and cheese, but that was just about all. For a while, his entire diet consisted of cheesy mac, cheese sandwiches, raisins (don't ask me), chicken nuggets and fish sticks. Oh, and peanut butter. Big fan of peanut butter.

An unfortunate symptom cropped up about this same time: When he watched other people eat something, particularly if it were some food he disliked, he would upchuck. Hurl. Any time, any where. It was almost as though he empathized so totally with the person he was watching that he imagined that he was eating the food. And so he did what he would have done had anyone stuck a blueberry in his mouth.

We were introduced to the concept of the gluten-free, casein-free diet and tried that for a while. After all, it made sense. If there were ever a child who had self-limited his diet to carbs and dairy, it was my son. The idea that his food might be serving as a kind of drug to him made enough theoretical sense that we decided to give it a shot.

That was six months of living hell. I am not a cook, but I home-made chicken nuggets and fish sticks every week with gluten-free bread crumbs. (My homemade fish sticks bore an unfortunate resemblance to something you might find buried in a litter box.) I baked gluten-free bread and bought expensive casein-free dairy products. The ninth circle of Hell for me would involve being locked away somewhere endlessly rolling up stuff in gluten-free bread crumbs.

chreese

Get it? Chreese?! Sounds like trees? Cause that's appetizing on your macaroni. (Appetizing = so gross)

We took food with us everywhere we went. Wanna see some black looks? Start unpacking your own picnic at a fancy restaurant serving Mother's Day brunch.

After six months and no real behavior changes – other than those you get when a child ages six months – we slowly started adding first gluten and then dairy back into his diet. Still, we saw no behavior changes.

Now I'm not saying that I don't believe the diet works for any autistic child. It must: There is a certain portion of the general population that is intolerant to dairy and a small portion with celiac disease. It stands to reason that some autistic people would also suffer those intolerances. When you feel uncomfortable – whether you're sick or tired – it affects your behavior. When Billy's sick, things can go completely off the rails: the echolalia gets worse and he's in a bad mood. I absolutely believe that a child with an intolerance to wheat or dairy would feel much better – and behave much better – if those irritants are removed from his diet.

Billy's just not one of those kids.

We decided to make new foods one of our ABA goals. At the prompting of our awesome therapists from BMC, we implemented an eating routine:

At the beginning of every meal, Billy is offered a non-preferred food (non-preferred = loathed), such as corn or peas, in five super-tiny bites on a separate plate. Next to that plate, is his preferred food. For him, that's ice cream in a little cup. For every bite of the non-preferred food, he gets a bite of ice cream. After he finishes his corn (or 15 minutes are up, whichever comes first), then he gets the rest of his meal (bring on the cheese sandwich!), followed by the rest of his ice cream.

For a few weeks, every dinner (we only did this one meal a day) felt like the opening scene of Saving Private Ryan. But he ate his tiny bites in order to get his ice cream.

I was so excited by his progress that when the therapists weren't there, I added extra rewards for each bite: a YouTube volcano video for every bite ALONG with the ice cream, a few minutes on the iPad, and then, I started dancing.

The dancing had a miraculous effect. He started laughing and eating things that prior to this had made him scream like he'd been poisoned. He ate pizza and peanuts and barbecue chicken. He suffered through bananas, though we've since decided he just doesn't like them – which is fine.

S_BillyBday10_LUN2

I'm trying to figure out a way to disguise nutritious food as birthday cake.

My dancing got more elaborate – until the day our ABA team put the breaks on it. Apparently, dinner isn't supposed to become a poor off-Broadway musical. And apparently, it could cause other problems later if I had to follow him around everywhere doing the Roger Rabbit or The Sprinkler. He's going to have enough challenges in the school cafeteria without having to explain that to his classmates, I guess.

I was convinced that the second I stopped entertaining him with my nightly one-woman show, he would stop eating. In my mind the only thing motivating him was my Humpty Dance.

But no. Ice cream is apparently as motivating as The Worm. Which is probably no bad thing. I got close to injuring myself a couple of times.

One of the biggest realizations I'm come to through this process is that Billy's self-limited diet was, in his case, behavioral and not related to any physiological problem. That being said, I think he started limiting himself because he used to suffer much more pervasive sensory problems related to smell and taste and texture. So we take it very slowly.

And it's been great to see him add things to his diet that he has discovered he likes. I don't force him to eat. I encourage him to eat. My job is “attaboys” and the ice cream currently provides the motivation to try.

Our New Year's resolution has been to eliminate the words “stick” and “nugget” from our kids' diet, to eat fresher, less processed food and to try and bridge the gap between “Billy” food and our food. It's been more successful, more quickly than I could have imagined. Tortellini has replaced mac-n-cheese; soy nuggets have replaced those containing Frankenchickens, and vegetables are easing their way into the rotation on a small scale.

I still occasionally break out my Cabbage Patch, but now we save that for dessert.

Reader Comments

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LMAO

This is hilarious; that 9th circle of hell line: GOLD!

We tried the diet, too, but not nearly as long as you did. I just didn't have it in me to keep it up for very long, especially since at the time the only thing he would eat was Mac & Cheese and this was before GFCF stuff was trendy so there was no rice pasta alternative. Luckily it made no difference, I can't even imagine being GFCFSFEFWFTFRFQFFF

Sprinker vs Grocery Cart

Aww! Look at that face?? He's lovin' it... Ok, so you do the sprinkler, I'll do the grocery cart and he may just eat an entire thanksgiving dinner! Btw, I once heard of a kid who would only eat when he was sitting on his dad's shoulders. So every morning for breakfast the kid would sit on his shoulders balancing a bowl of cereal on his dads head... so when you put it all in perspective, you don't have it so bad!! ha! Good luck!

Cheesy Mac

Oh, Amanda, I can really relate to this. Lately, I can't talk Henry into eating anything but carbs. But I have someone to blame; me likey the carbs myself.

I'm so glad you're having success. Peas? That's a real milestone! If your dance is working the magic you're describing above, then I'm going to have to insist on a vlog where you show us the steps...

Please come over to our house and dance... ;)

Peas!

Have you tried frozen peas with Billy? Canned peas make me want to upchuck...gross!

One extra benefit of the dancing is all the exercise you're getting!

Wendy

Hmmm....

You MUST do the Cabbage Patch for me!!!! Bahahahaa...love it! Great post. =)

I'm so glad he ate peas! What a victory! My husband is gluten free, and for awhile we tried going dairy-free, too. It was REALLY hard. It was a relief when we realized dairy doesn't affect him.

Apparently, I need lessons...

I tried the dancing thing tonight and for all my efforts, there is a stone cold pork chop sitting on my table... my son was not impressed at all. I am thinking we need video of the dinner dancing! On the bright side I laughed myself silly reading this post! This is so our life right now!

Total 14 comments

S_BillyfeedsWillow2

Reader Comments

Hysterical!

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