It was a good day… one of the best we’ve had in a while. She was happy today, genuinely happy, with smiles and giggles and real conversation. It was such a lovely change from what we’ve been dealing with the last several months… repetitive behaviors, self-injuring, grunting to communicate her mood, and behaviors associated with obsessive compulsive disorder. I loved so much being able to relax a little bit and just listen to her play with her brother without that constant walking-on-egg-shells feeling. Who knows what tomorrow will bring, but today was good… no phone calls from the school, no emails from the teacher, and no tears or proclamations of malcontent when she got home.
The day ended with me going into her room to kiss her goodnight and turn down her blankets as I normally do. I adjusted the heavy weight blanket that helps keep her calm so she can fall asleep and turned on the white noise machine that drowns out neighborhood sounds. She pulled my grandmother’s old rocking chair to the middle of the room for her nightly reading session and sat her little desk chair in front of it so she could rest her feet while she rocked back and forth. She needs the rocking motion to calm her nervous system but is still too small for her feet to reach the floor. She then grabbed her sensory ball and shoved it under her chin to stop the constant and often painful nodding of her head, a motor tic caused by her anxiety that is relentless when she’s reading.
The sensory ball was not getting the job done tonight. It was causing irritation as she nodded against it, preventing her from drifting into the “fairy world” she enjoys when she’s had enough of this one. I immediately noticed the irritation. “It’s moving and bothering me,” she said. I set out on a mission to find a better solution, grabbing several balls of different sizes and textures from the toy bins in her brother’s closet. None of them were right, she told me, for various reasons. Realizing the type of item I needed to find, I hurried to the playroom to grab some small stuffed animals. I found a little dog that seemed like just the thing. It was soft but sturdy, and the space between its front and hind legs would be just wide enough for her to fit around her neck to rest her nodding chin, minimizing the pain and disruption to her reading. I took it to her. “Look,” I said, placing it around her neck. She giggled, “I like it.” As I tried to kiss her goodnight and tell her I love her, she gave me a wave and a little nod without looking at me that meant, “I want to be alone.”
As I shut her door, I looked at her for a moment in a scene that looked unusual at best and downright weird at worst: a tiny child sitting in an odd position with a stuffed dog tucked under her chin, rocking, and reading a book at lightning speed… a child who no longer wanted to interact with me because she was quickly going in her mind to the place she goes when she needs a break. Sadness crept in to our good day, sadness that it takes so much work for her to be able to read a book, sadness that she needs to mentally go to another place so often, sadness that it’s been so rough for her the last few months, and sadness at the prospect that her mild autism and accompanying anxiety will be our life-long companions. It was a good day, and I’m trying desperately to enjoy it.