This chapter was taken from: Newman B. and Reinecke, D. R. (2012). Move with a Purpose: Solving common behavior issues before they become unmanageable. New York: Dove and Orca.
Chapter Twenty Seven: My Brother Joey Lillianna Rogers
My name is Lillianna Rogers. I go by Lily for short. I am twelve. I have two brothers. Joey is ten and has Autism. Matthew is nine and doesn’t have Autism. When Joey was little, he cried all day. He pinched people, he hit people, he cried at night, he ran around in circles, he wouldn’t eat food, he took his clothes off, he ate things that weren’t food, he broke my toys, he scribbled on anything he could find, he made it hard for us to go anywhere but home, and I couldn’t have friends over. There was so much to work on that we didn’t know which thing to pick. Mom and Dad would make lists and talked it over with professionals. They would ask me and Matthew questions to see what bothered our lives the most. Mom tried to work on anything that hurt us most like the pinching, or the things that kept us from having friends over like the taking his clothes off. But what I wanted was for her to work on the things that made Joey the saddest. When I was little and Joey would cry a lot, it seemed simple for me. I thought Joey was crying because he was sad. Mom would say he is trying to communicate, but I didn’t believe her because he just looked upset to me. So we e-mailed Bobby Newman together. Mom always asked him questions and she told me I could any time as well. So I told Bobby how Joey cried all the time and I asked Bobby why Joey was sad. I thought he was sick or not feeling well. Bobby told me the reasons Joey might be crying. There were lots of reasons! It wasn’t always because he was sad or not feeling well. I felt better because Bobby was a doctor, so I believed him. Since then, I always just ask a question that is on my mind. I tell everyone who has a brother or sister with Autism to ask questions. I wish we told more kids to do that. Joey is ten now and because of all of my questions I can do things that are easy and that help Joey. I understand things I wouldn’t about him if I hadn’t asked the questions. When we go places, even places just for kids with Autism, I think there are lots of kids with Autism but some have a harder time than others. I think Joey has a lot of things to work on all of the time, and it is not fair because most other kids with Autism that I meet don’t have this much to work on. I get sad about this, but it doesn’t last long because I am confident that we can do something about it. If I didn’t understand this, if I didn’t see how hard work could change something, I would be sad all the time. I think we should share information with kids with this purpose in mind. Kids can be a lot of help, if they know what to do. There are many things I do for Joey. When Joey is outside and running in circles, I follow him and play chase. I make this behavior into something I think other kids do so he won’t get made of fun of. When Joey repeats something over and over, I ask my Mom or his teachers questions about why he does that. I use their answers to help Joey. I learned that Joey likes when people say things with a lot of emotion. So, if I want to teach him a new phrase I say it in the funniest way I can so he will remember it the fastest. Some of my favorite phrases that Joey says are, “I love Lily,” and “Have a good day.” He mimics Grandma and says, “Oh my God!” I’m trying to teach him, “Oh my gosh!” I make the shhh sound really strongly so he hears it best. When Joey says phrases that I think other kids will laugh at, I tell my parents other things that kids our age say instead. When Joey walks up the stairs, he walks up two stairs and down one and then back up two stairs. I thought we could teach him to count the stairs because he doesn’t like to repeat any numbers so he might not want to walk down a stair he already counted. I know what kind of pants Joey feels comfortable in. I tell my parents what ones he likes that he will get made fun of for wearing. Sometimes we still let him wear them but it is a good thing for my parents to know. Mom and Dad have videotaped me and Matthew playing games or doing activities that we want Joey to learn because he learns best with videos. In fact, he watches them over and over again! We try to use this to our advantage. When Joey was eating pencils, me and Matthew went to school and watched for any kids that were chewing on something other than food or gum (Joey doesn’t like gum). We saw kids who kept straws from lunch in their mouth all day. So we taught Joey to chew on a juice box straw. He does this all the time at school and no one laughs at him. Just today, Joey was making loud noises and laughing. I sat next to him and mimicked his noises but made them sound more like singing. Each time he makes this noise I will sit next to him and sing until he slowly changes what his noise sounds like. We aren’t perfect. When we were working on the pencil problem, we were supposed to keep the pencils out of sight. I forgot all the time. Mom taped a half eaten pencil to the fridge to “help me remember.” It was funny. Joey can only be naked in his bedroom. Mom fired the person who broke this rule. That is funny too. We call it the naked room (not when my friends are around though, and they can come over now). Joey covered our toilet seat with my nail polish. We left it like that because it was prettier that way and made us laugh every time we looked at it. My friends asked me what exploded in our toilet. I said it was a nail polish bomb. There are many funny things to talk about. There are a lot of things I can do for Joey and I feel better being able to do them. But I can only do them if I can ask questions and learn. I am grateful that my parents let me ask my own questions directly to Bobby from the time I was little because now I can feel helpful instead of sad. When my mom gets upset about how this life affects my brother Matthew and I, I can tell her to stop trying to make our lives average because we will never live an average life. But we live a happy life. We live a great life together as a family. Joey would still be doing all the things he used to if it weren’t for us. But it isn’t just my Mom and Dad who get to feel good about it. We all feel pride for ourselves and we are proud of Joey. Joey inspires me to do things I wouldn’t normally do, like stand up for kids who are being bullied. He has taught me to be true to myself. I try to be exactly who God made me to be. I want Joey to be exactly who God made him to be, too. I like being able to help him and I like the funny things he does. I think it is funny that he carved a 3 on his pumpkin instead of a face. I try to teach him how to do the things he likes to do without getting made fun of. He wants to have friends so badly. He cries when he comes home from school when he gets made fun of, or the teachers talked about him. People think he can’t hear because he doesn’t talk all the time. So I try to teach him how to do all the things that make him happy without getting picked on. I am his sister and closest to his age, so I think I am the best person to do this. Plus I love him.
- We are grateful to lily for her permission to share it.