Clay’s Sensory Issues by Celia
A My Brother is Autistic Book
Fortunately, Daddy picks out really good Bible verses to read to me and Clay. Clay is my brother. He is 4, and he is autistic, and he doesn’t talk yet. If you read some of my other books you already know something about having an autistic brother. And, you might know I am rewriting the Bible, so Clay can understand it. That’s a very, very tough job, but at least Daddy chooses good verses.
Grammy helps me with the rewriting. She used to be a teacher until she retired, so she is a very good helper. Clay and I go to Grammy’s on Monday and Thursday night after school until 7:00 when Daddy and Mommy come to get us.
In this book, I am going to tell you about two things: Clay’s very strange eating habits, and the proverbs that tell little kids like me and Clay to use our eyes and ears. When Daddy read the verses, he said, “Proverbs 20. Verses 11 through 13 say,” (He always starts off like this.) “Even children are known by the way they act, whether their conduct is pure and whether it is right. Ears to hear and eyes to see— both are gifts from the LORD. If you love sleep, you will end in poverty. Keep your eyes open, and there will be plenty to eat!”
Even though Grammy says I am wicked smart, I have to admit that I didn’t really understand all those words like poverty and how keeping your eyes open would mean you would have enough to eat.
But, it did make me think about eating, and I figured the first part said kids are supposed to do what is right. And there was Clay opening a peanut butter cup, and I knew exactly what he was going to do with that peanut butter cup, one of his favorite candies. He would gently rub it all over his face. I mean, how was that right?
And when he got done rubbing it on his face, then you might think he was about to eat it, but no he just likes to feel it with his lips!!
Most kids like Clay who are autistic also have sensory issues. Don’t worry. when Mommy first said that Clay had sensory issues, I had no idea what she meant, either. So, she explained that our senses are our ability to see, hear, taste, smell and feel.
You know, all the things the parts of your face do and your skin. Now, most of us can see, hear, taste, smell, and feel, but someone with sensory issues has problems with these things.
I had Grammy help me with a picture to show you the five senses on Clay. He is wearing his jacket cause he likes to keep it on sometimes. Notice the feeling is on his cheek. I feel things with my fingers but Clay likes to feel things with his cheeks, his mouth, his feet, and his hands.
Sometimes Clay likes to use one of his senses over and over cause it feels so good to him. That’s what it is with peanut butter cups. He likes the feel of them on his face. I tried it once, but it just felt stupid to me. I just wanted to eat it.
Sometimes he gets very upset by one of his senses like when he hears the popcorn popper. Then, he puts his hand over his ears and cries. I guess you know, on nights like this, we don’t get any popcorn.
Clay’s sense of smell is very strong, and if he doesn’t like the smell of something, he will not eat it. He can smell something from anywhere in the house. Now, if I don’t like something like onions or peppers on my pizza, Mommy says, “Just try one.”
If Clay holds up his hand and pushes Mommy’s pizza away, Mommy says, “That’s ok, Sweetie, Mommy will warm up the macaroni and cheese you liked from last night.” Inside, I say that is not fair, but I don’t say it out loud. It isn’t Clay’s fault that he is autistic, because he was born that way.
I was very glad when Thursday came, and we got to go to Grammy’s. My bus always left me off at Grammy’s first. So, I had about 15 minutes with just Grammy and me. Then, Clay’s van from his special preschool would get there.
This gave me time to tell Grammy about the new verses. I explained things to her, and then I asked, “Do you think it is right for Clay to rub his peanut butter cup all over his face?”
“Do you think that’s what God is talking about?” She asked.
“Well,” I said. “Probably not. I mean, he probably was talking about bigger stuff like the ten commandments. BUT, it kinda makes me mad when Clay gets away with so many, many things. Things I would get in trouble for if I did them.”
Grammy just looked at me with that look, the one that says she is a little bit upset with me for thinking like that. I knew she would be. “It’s not easy having an autistic brother, is it?” She asked.
“Sometimes it’s hard, but I do love him. I love him just the way he is.” And then I thought about how cute and loving Clay looked sleeping in his swing.
“What do you think God was thinking when he put eyes for seeing and ears for hearing are a gift of God right after that verse.” Grammy asked.
I had to think about that one. “Well,” I said finally. “I don’t know, but if God’s gifts are our senses, why are Clay’s all messed up? Why does he cry when he ears certain sounds like popcorn popping?”
“One thing I have learned about life, ” Grammy said. “Is that some questions don’t have answers. We can either spend our lives looking for something that isn’t there or we can just enjoy things the way they are.”
“So, how can I enjoy Clay always getting things his way and getting to do things that I can’t?” I said. I have to admit I was a little upset by Grammy’s answer. There didn’t seem to be any hope for me at all.
Then, there was a knock on the door and in came Clay followed by Courtney his van assistant who had to get Grammy to sign the paper that said we had Clay. “Hi, Sweetie,” Grammy said. “How was your day?”
“Not so good, today,” Courtney said. “They said he isn’t feeling well.” He didn’t look very good either. He didn’t even look at his snack or jump on our trampoline. He just sat down on his toy chest and put his head down on his harp.
“Hey, Clay, ” I said. “Do you want to build a tower?” Clay didn’t answer, but then Clay didn’t answer most of the time, and if he did it was just sounds. He could really say some words, but he only said them once in a while.
He could say this and that and zip and Daddy and Mommy. He also said thank you sometimes, but you couldn’t be sure if he was really saying it or just making sounds. That day he didn’t say anything. Grammy came right over and put her hand on his forehead. “No,” she said. “No fever.”
Poor Clay, he was probably coming down with a cold again. He got lots of colds, and sometimes I got them, too. Mommy said that some autistic kids get sick more often. Suddenly, I went and got his peanut butter cup and unwrapped it and handed it to him.
I wanted him to be able to rub it on his face and feel good, but he put out his hand in a stop sign and just put his head back down. Grammy scooped him up and held him in her rocker. “We can do the verses later,” I said.
“Well, give me his tablet, ” Grammy said, ” So he can listen to some music. ” Clay loves music. So, I found his tablet that he keeps at Grammy’s and put on his favorite Playlist, “Clay’s Worship Songs.” The first one was Joy, Joy, Joy. Clay held the tablet, but he didn’t click on anything. “So,” Grammy said. “Back to eyes and ears being the gift of God.”
Clay must have been really tired because while Grammy and I talked, he closed his eyes and went to sleep. No wonder, I thought, when I went to bed last night, Clay, as usual, was still jumping on our trampoline at home. I have a bedtime, and Clay doesn’t, another thing I didn’t think was fair.
“Do you think maybe God is just telling us things and not really putting them together for a reason?” I asked.
“Do you think God would do that?” Grammy asked.
I had to think about that. Grammy likes to make me think, a lot. I figured this way: He only wrote one book for us to learn from, so I guessed he had a reason for putting it together a certain way.
“No,” I said. “I guess we are supposed to put being right together with our eyes and ears, but I don’t know why?”
“Ok,” Grammy said. “He says that even kids are known by the way they act. Now, as a child, you know what is good for you to do, right?”
“Yes,” I said. “It’s pretty easy to know what’s right or wrong. Mommy says that’s cause God wrote it on my heart, and Daddy says that’s because we have a conscience that tells us what is right and wrong.”
“They are both right, and then there are your eyes and ears. If you pay attention you will see and hear what is right and wrong. What happens if someone yells at Clay?” Grammy asked.
“Well, if someone doesn’t know he is autistic, sometimes they do yell at him to stop jumping or something else they don’t think he needs to do. And it isn’t very nice.” I said.
“And what does Clay do?” Grammy asked. Grammy already knew the answer, so I knew she wanted me to think about it and probably put it together with the verses. So I did think about it for about a minute. Then, I said, “He cries and gets all upset. So by using my eyes and ears, I am able to see what is right and wrong?”
“How did you get so wicked smart?” Grammy asked. “You must practice that.”
Clay slept all the way to 7:00 when Mommy and Daddy came to get us. Grammy said that he was probably just really tired. But, it worked out ok because I got to make supper all by myself. We had frozen dinners, and I got them out and put them in the microwave and even added more cheese for Grammy. She likes cheese.
Also, Grammy and I finished changing the verses so Clay could understand. Turned out people who close their eyes in sleep are lazy people who don’t want to work. I like to work. Like making supper for Grammy. That was fun, and she had to hold Clay. So people who are lazy and don’t work, get to be poor and can’t even have enough to eat. I thought that was stupid of them.
After, we ate, I took out our plates and silverware and made sure I had cleaned everything up in the kitchen. Then, when I came back into the livingroom, Grammy said, “So, Clay doesn’t have a fever, and there isn’t any congestion or coughing. I think just tired this time.”
“Thank God for that,” I said. I really didn’t want Clay to have to be sick again. I looked at him all curled up in Grammy’s lap. He looked very tiny.
“So,” Grammy said. “Do you still think things are unfair for you?”
“Well,” I said. “Some things aren’t really fair. But, I am not autistic, and I have a lot to be thankful for. I guess I am thankful that Clay is my brother, too.” Clay opened his eyes for just a minute and I really thought I saw him smile. Daddy is probably right. Clay knows a lot more than we think he does.
By the time Mommy came, Grammy and I had rewritten Proverbs 20, verses 11 through 13. Grammy typed it out and sent it in a message to my Mom. This is what we wrote. “Even when people look at little kids like me and Clay, they can see us being good because we know right from wrong If we keep our eyes and ears open, we can learn right from wrong and that is pretty easy. If you don’t keep your eyes open, and all you want to do is sleep, you are lazy, and you will get poor and not have enough to eat, so don’t get stupid and be lazy.”