By Kami-Leigh Agard
I wrote the following column six years ago. My daughter, who is about to be 15 in a few days, is still nonverbal, yet says so much just with her eyes. So, as we are getting ready to celebrate her sweet 15, I wanted to share with you—precious readers—some incite. Listen to the silence.
“I’ve got words for you b*tch,” she said.
I sprang up from bed startled, and raced up stairs to check on my daughter, who was peacefully snoring in her usual clock-like position. It’s amazing to see how she sleeps. Arms and legs splayed out in opposite directions like a peanut-sized grandfather clock.
So, it was a dream. I gingerly snuggled into my daughter’s bed, careful not to awaken her. As I stared at the ceiling, I reflected on everything she said to me in my dream. My daughter is a non-verbal eight-year-old with autism spectrum disorder (ASD), and sometimes it is hard to read her thoughts as she stares at you with her saucer-sized eyes.
This is what she said to me in my dream.
“Mum I love you, but I have some questions and want you to understand a few things about myself.
“When I was diagnosed with ASD, I felt you became frightened of me and withdrew, burying yourself in work. I know you fought to get help for me, but all I really wanted was you. You used to play with me, but then working, cleaning the house, running errands became priorities.
“What happened to you and daddy? I was so happy when we all lived together under one roof. I know there were a lot of arguments, but I loved when together you both put me to bed and read a bedtime story.
“I love when you brush my hair, but I hate when the brush gets too close to my ears, so please be careful next time. I think it’s so funny when you shampoo my hair because you put on your swimsuit and get in the shower with me, coaxing me to allow the water to rain down on my head.
“I love all your pet names for me: Pooh-pooh, pookie wookie, poopie woopsie and poops. I just get confused when you ask me, ‘Does my pooh-pooh need to make a pee pee, or a pooh pooh?’
“Also, when you guys are talking about me, please don’t act as though I’m not right there listening. Just because I don’t talk, it’s not like I don’t understand everything you all are saying.
“When I flap my hands, don’t tell me to stop. I flap when I am frustrated or even when I am happy. Observe how I flap when I run up and down the hallway. I feel like a bird, flapping my wings in gleeful abandonment.
“I know you get nervous when daddy takes me skateboarding, but I’m pretty good, maybe even as good or better than him. So have faith that I won’t hurt myself.
“I think you are beautiful mummy, so stop putting yourself down. When you come to pick me up from school, I feel so proud, even though I could see the anxiety creep into your eyes when you talk to my teachers. We both have the same big eyes, so it’s hard to hide our emotions.
“And mum, one more thing. I’m not sure what happened between you and daddy, but I love you both the same. It’s just that daddy allows me to have fun, even if it means falling when I am skating. It’s all a part of learning. You on the other hand, act as if I am a piece of china, always afraid that I will hurt myself. Please allow me to be free, so we can start having fun together as a family.”
As I reflected on my dream, I turned to stare at my beautiful daughter snoring in her drunken slumber. Tears rolled down my cheeks and I whispered to her, “I’m so sorry, my pooh. Mommy is going to start having fun with you.”
Rockaway Beach Autism Families’ next family support group meeting will be on Thursday, October 19, 7 p.m. at Knights of Columbus (333 Beach 90th Street). Also, stay tuned for details about RBAF’s 6th Annual Holiday Party, happening on Sunday, December 10. For more information, visit Rockaway Beach Autism Families on Facebook or Instagram.