More signs that things were off

Today, I am continuing to go on describing the odd behaviors that led us to the autism diagnosis for Elijah. The first one today has to do with his odd relationship with cups.  
There are two major issues with Elijah and cups. The first one is, Elijah will only drink out of one kind of cup at home. This behavior started around age four, so it was something else that wasn’t present as an early sign. Up until that point, he actually enjoyed getting new cups. Now, buying him a new cup would send him straight into a state of anxiety.  If we are at a restaurant, we are fine. He will drink out of their cups. If we are at someone else’s house, he will drink out of their cups. But, if we are at home, there is only one cup (that we have multiples of) that he will use.  It actually started as a different kind of cup, which is no longer available, so we were able to transition him to a new kind last year, but only one kind. They are these cheap, plastic Mario party favor cups. You can order them by the dozen from Amazon. Thank God. I have wasted tons of money buying all kinds of other cups, trying to find anything he would like. I even customize cups for customers with my Cricut, so I tried cups with his name, pictures of things he likes, etc. Nothing worked. The cups he used before the transition were small, plastic cups with straws from the Dollar General that had Lightning McQueen on them. So, when I was trying the transition to new cups, I bought other types with straws. I even bought him a really nice, double wall, plastic Mario tumbler with a lid and straw. He won’t touch it. Don’t ask me how he finally accepted the current Mario party cups. A miracle, maybe? But he won’t drink out of anything else. The summer he turned five, we went on a family vacation to the beach. I bought both of my boys really nice, Contigo water bottles for the car. They are the kind that you push a button, and a mouthpiece pops up connected to a straw, then you can close it when you are finished so it doesn’t leak. They keep things cold for awhile, are great for the car, and for taking out to the beach. Owen, who had just turned two at the time, loved his. He found it so fun to press the button and see the straw pop out. Elijah refused to use his. In fact, he cried when he saw it and said he wanted it out of his cupholder because even the sight of it upset him. So, Owen ended up with two cups, and we had to stop at a gas station and buy bottled water for Elijah for the trip, because he will drink pre-packaged bottled water and canned drinks.

            There is another cup issue. This one started about a year ago, so it was also no there as an early warning sign. This one is not about his own cups, but about Owen’s cups. Owen is three, and though he is more than capable of drinking out of a regular cup, we still use sippy cups at home with him because he spills drinks constantly. He likes to carry a cup around with him. So, unless he is seated at the table for a meal, he uses sippy cups. For some reason, Elijah cannot tolerate the sippy cups being near him. At first, we though Elijah was being dramatic. He tends to do that, so it can be hard to tell at first if that is what he is doing when he becomes upset about something that seems minor to us. But, it persisted for months, and reached the point of causing actual tears at times, so we eventually realized it was definitely real. If Owen walks within a radius of closer than a few feet and has one in his hand, he starts having a meltdown. If one is sitting on a table, he will walk several feet away from the table and not even come near it. Elijah will scream if I am carrying one across the room to Owen and I walk by and get too close to him with it. If one is sitting on the counter, and his own cup is too close to it, he won’t drink out of his own cup. He has a noise he makes when something really bothers him. I call it his “stimming noise” because that is basically what it is. He makes this noise when he is very distressed about something. He doesn’t rock back and forth or flap, like some autistic people do, but he makes this noise. So, when the cup gets too close, he makes the noise. At least once or twice every evening, the cups ends up accidentally too close to him. It is unavoidable. So, he makes the noise, and if the cup doesn’t get moved, starts crying and melting down. The other problem we have is a typical sibling issue. Owen seems to enjoy that his cups cause a reaction from Elijah. So, consequently, being brothers, they love to annoy each other. So, when he is mad at Elijah, he starts chasing him with the cup, then laughs when Elijah gets upset. Owen is three. He has no understanding of autism and what that means, so there is no sympathy from him about the cup. We tell him to stop, and he does for the time being. But, next time Elijah makes him mad, he will run and get that cup! They are brothers, and one thing the autism does not stand in the way of them having a typical sibling relationship!

Eating habits were another area that set Elijah apart from many younger children who are diagnosed with autism. Picky eating, often caused by sensory issues related to taste and texture, is common in children with autism. As a baby and toddler, Elijah was he least picky child I knew. He ate almost everything, and truly loved to eat. I would take him to the Chinese buffet at age two, and he would load up his plate with all kinds of different dishes. He also loved Mexican and Italian food. He would eat the entire bowl of salsa at Mexican restaurants before the food came. He loved vegetables also, especially broccoli and raw onions. He once bit into a raw onion and ate it like an apple. I could take him to any restaurant and have no problem finding something he would eat. He ate salads, spicy buffalo sauce, dill pickles, tuna, mushrooms, black olives, jalapeno peppers, and all sorts of things many kids, and even adults, might not like.

Elijah was four when the issues with food started slowly creeping up. His issues had little to do with the texture and taste of food, but more about the setting in which the food was eaten. The very first issue showed up when he was changing babysitters. He had the same babysitter awhile, but she had some things come up, so we switched back to our old babysitter who we had used from the time has was a baby until he was two and a half. She had moved away, but was back, so she agree to come back and watch him. Though she had been out of his life for two years, he remembered her from before, so we weren’t too worried about the transition. For the most part, it went okay. But there was one thing that was really off. He refused to eat when she was there. This came as a huge shock to her also, because when she had watched him in the past, she remembered what a great eater he was. She could not even get him to eat a snack. We were shocked as well. As much as he ate, we couldn’t imagine how he could go all day and not eat when she was there. We tried to ask him about it, but he never could give us an answer about why he wouldn’t eat. Finally, after four weeks, she got him to eat some chicken strips for lunch one day. After that, he would only eat chicken strips when she came. For the next eight months, he ate only chicken strips on the days she would babysit him, usually two days per week. His only explanation was, “I have to. That’s what I eat on her days. I can’t eat anything else when she is there.”  Any other time, he was the eater he always was. For us, he continued to try new foods, eat spicy and odd things, and constantly be hungry.

After that summer, he started kindergarten. That is when things really started to become problematic. He decided that he didn’t think what they were having for the school lunch sounded good on the first day, so I packed his lunch. We carefully chose together what I would put in it. He headed off to school. I wasn’t worried at all about him eating. Apparently, I should have been. He came home with his lunch untouched. I thought maybe he was nervous because it was the first day. But, every single day, it was untouched. I tried packing different things. It didn’t matter. He absolutely refused to eat even one bite. I was baffled. This was my son who ate everything. He was always hungry. He couldn’t go a few hours without eating. He was going all day, five days per week. When I asked him about it, I could never get very clear answers. He usually said simply, “It’s too loud in the cafeteria. I can’t eat when it’s loud.”

His teacher became concerned about it also. She arranged for him to eat his lunch in the nurse’s office. Once that change started, he did start eating, thankfully. But, he was very particular about what had to be packed in his lunch. He would only eat a very few specific things, usually the same thing every day for awhile, then it would switch to something else. Similar to the way he was with the babysitter, and very different from his eating habits at home. No one at school would ever believe that he actually loves to eat and enjoys such a variety of foods.

When he moved on to first grade this year, it was back to the cafeteria again, and right back to not eating at all again. He was very insistent that the cafeteria is too loud and that he is afraid to eat in front of the other kids. They allowed him to eat with the nurse a few times, and he did eat, but then he was sent back to the cafeteria, where he went right back to not eating. Yet, on the weekends, we would order Chinese take out or a pizza covered in mushrooms, spinach, and black olives, and he would devour it. It was all about the setting…mostly.

There was another food related issue that started when Elijah was five. This one I will refer to as “long pieces.”  For his fifth birthday party, he requested my homemade tacos to be served. This party was the last time he ever ate and enjoyed my tacos. The next time I made them for him, he looked at them like he was afraid of them. After staring at them a long time, he told me that he couldn’t eat them because they had, “long pieces” in them. To this day, eighteen months later, I still don’t know what long pieces are. I have tried and tried to get him to explain it to me, because they are the reason he no longer eats half of the foods he used to enjoy. But, he can’t seem to explain it to us. Next, it was spaghetti that had long pieces, followed by tons of other foods he once enjoyed. Most recently, it is pizza. He actually stopped eating pizza last month. This might have been the hardest to deal with because it is our go to food. Anytime we’re tired, can’t think of what to have, etc. it’s, “let’s order pizza,” or, “just throw in a frozen pizza.”  Even my insanely picky three-year-old eats it. Now, we have to make Elijah a peanut butter sandwich when we get it. (Without jelly, because jelly now also has long pieces.) Another interesting fact about long pieces is that there isn’t a lot of consistency in what foods have them and what foods are okay. For example, tacos from home have long pieces, but Taco Bell tacos are fine. When Elijah decides a food has long pieces, he doesn’t just not want it. He actually shows physical anxiety about being asked to eat it. Sometimes he even tears up a little. This is how we know it isn’t just him making excuses not to eat food. If he doesn’t like something, he’ll tell us. He doesn’t act distressed by it. I am honestly not sure how, or even if, this “long pieces” issue relates to autism, but it is a big issue that is affecting his eating, so it seemed worth mentioning.

The final area of concern related to food is actually fairly common even among neurotypical people, but it is the extreme to which Elijah takes it that makes it concerning.  Elijah goes through phases that involve him showing preference to certain foods. He will have two to three foods that he loves for the time being, and he wants them for almost every meal. He will do this for days on end. Then, one day, he will stop, as though he is finally tired of whatever it is. But, the problem is, he doesn’t just take a break from it for awhile and then go back to liking it again. Once he is done with it, it is forever. That is the problem. Many people go through phases where they are really craving a certain food and eat it a lot, then eventually get tired of it and need a break for awhile. But, most of the time, they eventually want it again. With Elijah, it’s final. So, as parents, it’s so hard, because we get used to making his favorites all the time, then all of the sudden that option is gone and we have to try to find something he will eat. Eventually he is going to tire of everything. Between that and all of the things that have long pieces, my child who once ate everything is slowly become my child who eats hardly anything. Yet, amazingly, there are still things he does love that he hasn’t burned out on yet. Like last Saturday, when I took him out to dinner at a Mexican restaurant and he ate chips, salsa, cheese dip, a taco, rice, and refried beans. He also ate the lemon off of my water- every bit of the fleshy part. He is such a mystery sometimes. He asked me the other day if they used puzzle pieces to represent autism because they are a puzzle no one can figure out. While that may not be the reason, it makes perfect sense to me, because my son is definitely a puzzle who is very difficult to figure out.