Daisy’s story was written by her mother Rachael Alaniz, who also participate in Hillcroft’s project as a storyteller. To hear more stories like Daisy’s, be sure to check out the Hillcroft’s Facing Disabilities Project Event on October 4th at Civic Theatre.
Everything has a right answer. I know it does. I just haven’t learned all the right answers yet.
The answer to “How are you?” is “Great.” One of my therapists told me that’s a way to answer that question.
The answer to “What is your name?” is “Daisy.”
The answer to “How do you spell camel?” is “C-A-M-E-L,” and the answer to two plus three is five.
If someone asks me a question like, “What is your favorite color?” and I don’t know the right answer, sometimes I throw myself on the ground and scream.
If I’m at therapy, that means my therapist’s piece of paper gets turned over to red and I need to start over and earn six more tokens for not crying so that I can get a reward.
So now I cry less.
I think the answer to a question I don’t know the answer to is “I don’t know. Can you help me?” Someone once told me I can say that instead of crying.
Then we can talk about what the answers could be, so I can pick an answer and then that’ll be the right answer to that question from now on.
I think I know what a compliment is. It’s when someone says I’m smart or pretty or cute or says they like my clothes. The answer to a compliment is “Thank You,” and the answer to “Thank You” is “You’re welcome.”
I remember everything. I didn’t used to talk a lot but, even when I was a baby, if I saw a commercial or television show just once, I learned every body movement and facial expression the characters made. Now that I’m a good talker, I can recite entire television shows for you.
Other kids make me feel scared sometimes. I don’t know the right answers to how to play with other kids.
When I was really little my mom used to take me to the library to play, dance, and sing with other kids. The clapping made me scream, and I hated when the other kids would use egg shakers or drums to make music. Sometimes I would hit or bite the other kids, and sometimes I would bite myself. Then my mom stopped taking me to the library and only a couple of kids would come to our house sometimes.
I don’t like having other kids in my house. The same adults who would come over to do therapy with my sister started coming over to do therapy with me. I really liked that. Then I turned three years old and the therapists stopped coming to see me.
Now, my mom or dad drops me off at the ABA clinic every day where I learn with other adults and they make me play with other kids. The adults are helping me learn how to play well with others. They even come with me to my preschool to help me learn how to be near the other kids. I’m getting better. I don’t cry very much at school anymore. Besides, we get to do worksheets at school. I love worksheets. I like to play board games with the other kids. Board games have rules. I always know what the other kid is going to do and what I’m supposed to do next when we’re playing a board game.
The answer to the question, “Is your sister a big kid or a baby?” is “Big kid.”
My ABA therapists help me to understand that my sister is little like a baby and isn’t able to do what other three-year-olds do but that she is still a big kid. My sister has eight fingers and I have ten fingers. She is deaf and blind. That means her eyes are always closed and her ears are always plugged.
I’ve never held my sister, but I hug her.
I used to go live at the hospital with my mom and my sister a lot. I call the hospital “the home base.” Other kids don’t get in my space at the home base. I like it there. Sometimes it gets really loud at the home base and there are lots of doctors around. Mommy used to put me in a play pen with a toy when that happened.
Sometimes I imagine things when I’m sleeping and I wake up screaming. My mom says I’m dreaming. After I got good at talking, I told mom and dad that I scream when I dream about my sister at the home base. In my dreams, the doctors hit her and squeeze her too hard and poke her in her chest. It’s just like when I’m at the hospital with my mom and sister. Everyone is hurting my sister and my mom is crying. It scares me.
Mommy doesn’t take me to the home base anymore.
I remember everything.
If you sing those songs we used to sing at the library when I was a baby and no one thought I was paying attention, I can do all the dances and I know all the words. I saw a bucket at the store and kept telling my mom it was for baseball. It was the same bucket my tee-ball coach uses to transport the balls. It took my mom awhile to figure that out. She doesn’t remember everything like I do.
Be careful what you say about me in front of me. If you say I can’t do something or we should do things differently because of me, I will remember that too. Just because I don’t look like I’m paying attention, I am. Even though I don’t express my emotions very well yet, I still feel the same things you do.
The answer to “Do you understand?” is “Yes, I understand.” And the answer to “Are you okay?” is “Yes, I’m okay.”
I’m going to learn all the right answers.
Rachael Alaniz is happy to be included in this project as a writer telling her own daughter’s story. Rachael is the stay-at-home-wife to her husband, Kevin Gatzlaff, and stay-at-home-mom to her two daughters: four-year-old Daisy who has CASK gene mutation including autism, and three-year-old Aria who is living with Fanconi Anemia. Rachael hopes that her writing has done justice to the unique ways in which Daisy experiences the world. She would like to thank the Hillcroft ABA Clinic for helping Daisy to break out of her shell a little more each day.
This story originally appeared in Facing Disabilities in East Central Indiana, a publication of The Facing Project that was organized by Hillcroft Services in Muncie, Indiana.