S: My Name is Lily
BC: May 2011
FC: LILY | My Name Is
1: My Name is Lily Written by Kelli Lane Photos by Katie Rohs Cuteness by Lily Rohs
2: My name is Lily, and I'm a lot like you.
3: I live with my mom, dad, and my twin brother, Hank. | I love my family.
4: I ride the bus to school. | I have a cat named Max. | I eat peanut butter and jelly. | I love to play outside.
5: I am different than you in some ways, too. I have epilepsy and autism.
6: Epilepsy means the signals in my brain get confused. Sometimes, I have seizures. | When I have a seizure, sometimes my head will suddenly drop, or I will stare off into space. You can't do anything to stop a seizure. If you see that I'm having a seizure, just be patient. It will be over soon.
7: Even though I have epilepsy and autism, I’m a kid, just like you! | Autism also affects how my brain works. It makes my body feel things differently and I play in my own way. I like toys that light up and play music. Sometimes I like to play with one toy over and over again.
8: I have good days and bad days. I have feelings like happy, sad and scared. You can tell that I’m feeling happy when I smile or sad when I frown.
9: Sometimes I don’t want to do what my mommy or daddy asks me to do. Sometimes I fight with my brother. Do you ever have days like that?
10: Instead of talking, I use pictures, sign language, or an iPad to communicate what I want and need. My speech-language therapist helps me with this. Even though I don’t say words, I whine if I’m hungry or if I need help. My brother Hank says, "Just because Lily doesn't use words, doesn’t mean she's a baby."
11: At school, I have a para-educator with me to keep me safe and help me learn. Who helps you learn at school?
12: Most days after school, I go to therapy. I ride horses to help my body learn about balance. This is called hippotherapy, even though I ride horses, not hippos!
13: I have physical therapy to help my muscles grow stronger and my body become more coordinated. How do you strengthen your muscles? | I also have occupational therapy, where I learn to do things with my hands. I practice drinking from a cup, brushing my teeth, and holding a pen for drawing and writing.
14: Some very important therapy I do is called ABA*. It helps me learn things all kids need to know, like colors, matching pictures, shapes and letters. My therapist asks me questions, and when I get them right, I get a reward! My favorite reward is Starburst. | *Applied Behavioral Analysis
15: One of my favorite therapies is called Floor Time. This is when I learn how to play, take turns, and that it’s fun to have friends. Will you be my friend and play with me?
16: I like people, and I’d like to play with you! I do some things differently, but some things the same, too. Once when my friend Ronan threw me a ball, I caught it!
17: When I play t-ball, my dad helps me bat and run the bases. Sometimes, my brother pitches.
18: Just like you, I love going to new places and seeing new things. I had a great time exploring the Seattle Aquarium with my brother.
19: My name is Lily, and I'm a lot like you.