April is Autism Awareness Month! We like to spread awareness all months of the year, but in April, we may talk about it more. I made a sign for our front door a few years ago that we hang in April. The St. Louis Cardinals sign has to wait until May. Sorry Steve! We may share a few more autism related memes on Facebook (although we do a fair amount of that already). And I started a blog right before this awareness time starts.
Time to focus solely on Brandon. Ha! That just isn’t possible. We are all in this together. But I will tell you a bit more about some of his sensory needs. Specifically related to his eating habits.
The gustatory system is the sensory system in our bodies that is responsible for the perception of taste and flavor. That’s a fancy way of saying it is what happens in our mouth when we eat and drink. Brandon has always struggled with finding foods he will eat. He smells everything before he puts it in his mouth. Everything. And if it doesn’t smell right, it isn’t going in.
In clinical terms, he is hypersensitive to oral input. Some examples of his sensitivity:
- very picky – textures and smells are sometimes hard for Brandon
- may gag at times
- may have difficulty chewing and swallowing
- he chokes
Brandon is picky. He is really, really picky. Here are his current favorite things to eat. Hot dogs with cheese, taco shells with cheese, mashed potatoes and cheese, macaroni and cheese, waffles (frozen, never home made), and ramen noodles. You may have noticed a pattern with the cheese. Brandon loves cheese. Orange cheese (cheddar) and white cheese (mozzarella) are his favorites. It can be shredded or the brick type. And he really likes the mixture of white and yellow cheeses. Most food and drink items are classified by color.
He will eat a few other things. Brandon will do the occasional 3 egg omelet, as long as it has cheese. He will eat a cheese quesadilla, as long as we have the right tortillas. I never knew they weren’t all the same until Brandon taught me. He will occasionally eat some chicken and ground beef. And spaghetti and long as we put “spaghetti cheese” on it.
When Brandon really doesn’t like what we are making/encouraging him to at least try, he will put it in his mouth and immediately gag. That’s his way of saying he is quite unhappy with what we are asking him to do. He will then chew up and swallow whatever different food it is. Sometimes he asks for more, sometimes he doesn’t. We always thank him for trying something new.
There are the times he will chew on something for 10 minutes because he can’t swallow it, even with a bunch of encouraging and cheering him on. At that point, he just spits it out. And that is okay.
There are the times Brandon loves what he is eating. He tends to eat too fast and needs us to make sure he slows down. Choking happens. Every few weeks someone has to do abdominal thrusts. That’s one of the not very much fun parts of Brandon’s autism. The choking scares the crap out of all of us.
He stopped eating.
When Brandon was 8-9 years old, he started what they call “selecting down” his food choices. At one point, all he would eat was oatmeal cream pies. No matter how hard we tried, he would not eat anything else. And then he stopped eating those. His aggression was increasing and he was not sleeping. Well meaning friends and family told us he would eat when he gets hungry enough. Some suggested he was just being stubborn and trying to get his way. We knew in our hearts that him not eating was not behavioral. He literally could not eat.
Brandon had a wonderful child psychiatrist who worked with us during that time. She would call me to check on him. And she always asked how the rest of us were doing. When Brandon lost too much weight, the psychiatrist suggested hospitalizing him. That was one of the hardest decisions we ever made. He wasn’t sleeping, he wasn’t eating, he wasn’t focusing on anything. He was 4’6” tall and weighed 48 pounds (average weight for that age was 63 pounds). He was too thin and not getting any nourishment.
We had him admitted to a hospital for adolescents. He was there for 5 days. In hindsight, it was the best decision we made at that time. They worked with medicines, got him to sleep for more than an hour, and he finally started eating again. The day we went to visit and he was eating a big bowl full of cereal was one of the best days ever. Brandon was on his way back and we were thrilled. It took several months of trial and error to get him to broaden his horizons and his palate. We worked with a behavioral therapist who spent meals with us to help us know what to do. And how to do it. We started with the basics of getting him to touch the food to his lips and went from there.
We made it!
It’s hard to believe that was 11 years ago. He is still picky. He is still very selective about what he eats. But he will try new things occasionally. He now loves fried cabbage and roasted Brussel sprouts. He doesn’t request them, but he loves it when I cook those veggies. He will eat strawberries and an occasional piece of pineapple.
I recently made corned beef and fried cabbage. Everyone sat down at the table, except Brandon. He was quite insistent that he did not want to eat any cabbage by repeatedly saying “no thank you cabbage”. He would not believe me when I told him he likes cabbage. We let him stay in the family room and we all began eating. Brandon finally sat down with us and said “eat”. I asked him what he wanted to eat and he pointed to the bowl of cabbage and said “stuffing”. Stuffing it is!! And he had two big helpings of it. I knew he liked cabbage!
Welcome to Autism Awareness Month – in 2 days.