S: My Sister, Lily
BC: May 2011
FC: My Sister, Lily
1: Written by Kelli Lane and Hank Rohs Photos by Katie Rohs Awesomeness by Hank Rohs
2: This is my sister, Lily. We are twins.
3: I like to play with her and make her feel happy.
4: We both like to play outside. | We both like peanut butter and jelly. | We both ride the bus to school. | We both play T-ball. | We are a lot alike.
5: But my sister and I are different, too. Lily has disabilities called epilepsy and autism.
6: Epilepsy means that the signals in Lily's brain get confused. Sometimes she has seizures, and her head will suddenly drop or she will stare off into space.
7: Autism also affects how Lily's brain works. It makes her body feel things differently and she plays differently. She likes toys that light up and play music. Sometimes she will play with the same toy over and over again.
8: Doctors are working hard to learn how to help Lily. When Lily has to go to the hospital, it isn't fun for either of us, but it's important.
9: Lily can't talk like me. She is non-verbal. Instead, she uses pictures, sign language or an iPad to communicate. Sometimes she whines when she's hungry or needs help. You might think she's a baby because she doesn't talk, but she's really not.
10: At school, I learn about math, reading, science and recess. Lily goes to school too, but she learns different things. She is learning how to be safe on the stairs, how to drink from a cup and how to hold a marker.
11: I do after-school activities like swimming lessons. Lily goes to therapy almost every day after school. | She has therapy for balance and muscle strength, and therapy for her hands. It's boring for me when I have to go to Lily's therapy, but it's important for her. She also does ABA* therapy, where she learns colors, shapes and matching pictures. Sometimes I help and encourage her during ABA. | *Applied Behavioral Analysis
12: I feel frustrated with Lily sometimes, like when she breaks my toys. I have to put my toys up high or keep them in my room so she doesn't get them.
13: She also can't clean up her own toys yet, and sometimes she takes them back out right after we put them away! | It was easier when Lily couldn't open the toy boxes, but now I'm happy that she can get her toys out when she wants to play.
14: That's just part of life with Lily!
15: This is my twin sister, Lily.
16: I love her so much.