hamburger night

April is Autism Awareness month, and while we blog occasionally about the disorder and how it effects us, I wanted to do a post specifically on eating challenges that many kids on the spectrum deal with. As a side note: This month at Spencer's we have drinks of the month in honor of Lewis and Owen and both are delicious. Owen's is an orange Italian soda with coconut and it has been a real treat at the end of my pregnancy!!

Ok, back to eating.....For many children and adults on the autism spectrum, eating is difficult. From the books I have read, it seems to relate most to the sensory processing disorders that exist in the brain. They simply process sensory information differently than a normal person. So while you or I might feel something on our skin and think, "Hmm...what is that? Is it a spider or some lint?" and then we reach down and brush away whatever it is and move on. We have sensors that alert us when something is different and may be wrong. That is how typical people process sensory "information." For many on the spectrum, they have this type of sensation all day through lights, sounds, & sensations of all kinds. Some don't feel enough, and some feel too much. Their filter doesn't work quite right so that they may be over-alarmed, or not notice things that could be harmful to them.

For Lewis, he tends to be sensory seeking which means that he seeks out noise, movement and visual stimulation (through looking at lights or squinting at things from the corner of his eye) throughout the day. When it comes to foods, however, Lewis has sensory defensiveness. He is terrified of touching foods with his hands, but especially putting them in his mouth. Anytime something new is offered he will gag and cry because it makes him physically ill.

One book I read had an explanation from an adult with autism who explained that growing up when foods were offered to her, it was as frightening as if someone were trying to get a normal person to eat worms. Here are the worms on a plate and the person is saying, "It's delicious, just take a bite," and all she wanted to do was vomit. If you remember the show Fear Factor, and the awful rotten things people would eat on there, it would be similar! I try to remember that when we offer Lewis new things to eat. To him, it is something new and therefore threatening.

Lewis has a few foods he eats consistently: Rice Krispy Treats (his breakfast), red or black beans, apples cut into pieces (skin left on b/c that is the only part he will touch), yogurt with "no chunky stuff," Vienna sausages, chicken nuggets, french fries, pretzels, tortilla chips, potato chips & apple sauce. The only vegetables he eats are stage 2 baby foods, and generally only orange or yellow varieties. He eats nuts on occasion and has a variety of candy he will eat, but generally does not seek it out unless a therapist offers it.

With this in mind, Justin recently wanted to add hamburger to Lewis' rotation. He talked about it for several days in advance to get Lewis used to the idea. When "hamburger night" came, he grilled some burgers, cut one into pieces and proceeded to try to convince Lewis to take a bite. It took about 20 minutes to get Lewis to just touch it to his mouth. Meanwhile he was crying and gagging. It felt like an episode of 24 where Jack Bauer was literally torturing someone for information. After about 30 minutes when we were just about ready to give up hope, Lewis allowed a tiny piece in his mouth and Justin held his mouth shut to keep him from spitting it out. Once it was in there and he was chewing it, he calmed down immediately, swallowed the bite and proceeded to eat the rest of it while playing with an iPhone.

As he sat there eating and laughing, I was relieved, but also very sad. It made me so sad that trying to introduce a new food to my child was so hard and felt so mean. We have so many good things we want Lewis to experience and enjoy and yet each small step feels like a mountain. Owen, on the other hand, sees a new food and begs to try it. Coming from a family who loves to eat, it is really hard to imagine really not wanting to eat delicious foods. It is one of the things that Americans struggle with most! But for Lewis, taste is secondary to how a food "feels." It is impossible for a typical person to 'get', but we continue to press on, hoping to expose him to things in a reasonable manner so we don't overwhelm him, but so that he has a more rounded diet. We do it because we LOVE him, and we want GOOD for him. The process of it is painful for this mom to handle most days, but we are thrilled when progress is made.

We posted on Facebook about the hamburger last week, and we had several say, "So what's the deal with Lewis eating a hamburger?" To most it is nothing! To us it was like winning the lottery. Hopefully this lengthy explanation will help make sense of what life is like for so many families out there dealing with this incredibly strange disorder.