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.
I think this is Lewis getting his diploma.
Aunt Beth and Lewis with his diploma.
Lewis and Mrs. Brandy. She will be Owen's teacher next year!
Lewis and Miss Brittani, the assistant who helped him this year. She'll be moving to Florida soon, and we are sad to see her go! She has done a great job preparing him to move on to kindergarten next year.
Grandma with Phoebe.
Leaving the hospital.
Resting.
One of her first baths.
Owen hoping someone comes to see him soon.
The above picture came from an idea we got from our friend, Whitney Winkler. She has been taken monthly photos of her baby, Ellie, with a stuffed bear each month, and it is really evident how much she has grown over the months! We decided to give it a try with our stuffed lion. Hopefully she will grow and have more happy expressions in the months to come.
Phoebe has gotten into a pretty regular routine of going to sleep between 10:30-11 p.m. and sleeping until 4:30 or 5 a.m. She has slept seven straight hours a couple of times which was great! We took the above pictures after one of those long nights and she was so alert and almost smiling! Since then she has actually given some big smiles a couple of times. Those are hard to capture.
Getting a kiss from Owen (daddy's shot).
Cuddling with daddy in one of her little dresses.
Her big eyed look.
Phoebe has had a lot of visitors in the last few weeks. She got to meet lots of friends we don't see very often, including Corrie Powell (pictured above). We were so happy to see Carrie and Mary Powell too. Corrie was one of Lewis' first friends and he still speaks fondly of all the Powells. He was especially chatty about Brian Powell, but we didn't get to see him this visit, unfortunately! 
On Tuesday, Phoebe had her two week check-up, though she was a day short of two weeks. She had not quite gained as much weight as Dr. Kniery would've liked, so we have increased the length of her feedings and frequency when demanded. She weighed in at 7 lbs., 11 oz., 3 oz. shy of her birth weight. We are supposed to go back in a couple weeks to check her weight and not see the doctor unless her weight is too low.
We have asked Lewis multiple times if he'd like to hold his baby sister, and he has always said 'no' until the other day when he agreed to hold her. Once Justin put her close to him, he kind of changed his mind, but sort of got to hold her.
Just after Phoebe was born, we had a small Easter celebration at our house. Thanks to Grandpa Norm, and Grandma Martha, they actually had candy and some other random things for their Easter "buckets." They enjoyed looking through their loot and have been eating it on slowly ever since. 
Their cute shirts were courtesy of Grandpa Billy and Grandma Linda.
The guys went to church, while Phoebe and I stayed home for a nap.
Lewis was really excited about the jelly bellies (aka "candy beans").
Owen was ready to eat everything in sight, but we slowed him down somehow.
Ready for the ride home.
Owen loves to give her kisses!
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!!
Lewis has some new interests, as usual! He has gotten super obsessed with tennis, of all things. He saw some people playing at Keriekes park, and since then has started playing with real rackets (though he doesn't really swing and hit the ball.....he will bounce it to his partner and let them hit it to him). He likes to play Wii tennis, and Wii golf too. He mostly likes hitting the golf balls into the various bodies of water on the Wii. He can play well if he wants to here or there, but generally likes playing badly!
Apparently some of the tennis players he has seen also wear sunglasses, so he has begun wearing various pairs of glasses lately too. He looks pretty ridiculous in most of them, but it's funny to see him "pretending" in this way.
Owen has been enjoying the spring so far. One day, I found him trying out putting his hands in his pockets (a first!). He's not really done it much since, but it was a fun look for him!
He is as energetic as ever, and loves going for "runs" around the block. He's really hard to keep up with lately. I am physically unable to chase him the way I used to so I have to really get prepared, and there is a lot of forced hand-holding that he's not fond of, but it's the only way!
We got out the moon sand when it got warm and the boys have enjoyed playing with it.
Here's Owen in his monster towel.
And this is some of the "artwork" I found on my phone that Owen created with my Catpaint app. It cracked me up! Aside from these activities, Owen has been enjoying dipping food in ketchup and now salsa, watching Lewis play Wii sports, and memorizing tons of books that we read before nap and bedtime. He is especially into I Spy books these days, and loves to name things that start with various letters, or vice-versa ("apple starts with 'a'"). He is enjoying Big Red School so much more now, and actually smiles and says, "Hello!" when he goes through the door. It is a welcome change! He has absolutely no interest in potty training, but we are lacking the energy to take that on these days anyway.
