“Stay in awe of life. The little things are the big things. “ ― Richie Norton
“I’m cold.” Bink had just gotten up, a good hour later than she used to get up on any given pre-Covid Monday.
My eyes scanned her body, noting the hybrid pajamas I’d hastily grabbed for her to put on after her bath the evening before. The top, a pale pink waffle weave that had seen better days, was from a winter set. The sleeves had been cut shorter so they wouldn’t get wet when she washed her hands. She was sporting knee length summer-ish bottoms, made of a lighter weight fabric in a brighter shade of pink. They, too, were once part of a matched ensemble. Sets of things don’t stay together for long in our house. Her feet were bare.
“Hmmm,” I said. “You could put on a sweatshirt, and maybe some socks.”
Individuals with autism can have great difficulty with body awareness, which includes processing sensations and emotions. It’s only in the past few years that Bink has been able to identify a recent feeling or experience, and relay it to me within a few moments or even a few days. This happens sporadically, and I don’t take it for granted. Someday she won’t have me to instinctively understand her and help interpret her actions for a world that can’t. Though she will never live alone, and will always need help, any gains she can make in the self-care department will contribute to her comfort.
She trundled off towards her room, and a few minutes later I heard her addressing me as if I was right there with her. I sighed, feeling the familiar words rising in my throat. You need to come to where I am if you want me to hear you. I would have had to yell them down the hall, though, so I stuffed them back down into the room inside of me where I store frequently used sentences and expressions.
When I entered her bedroom, which is pink on pink and accented with more pink, she was standing in front of the closet looking in. “Mommy I don’t see the sweatshirt.” I instantly understood that she was looking for a hooded, full- zip sweatshirt. After all, that’s the kind we’d both been wearing recently on our walks outside. Let’s wear sweatshirts, I’ve been saying, as much to myself as to Bink or Superguy, as we get ready for our strolls and our hikes.
I pointed to one of her many pink crewneck sweatshirts that she’s been wearing all winter and most of this cool spring. “These are also sweatshirts,” I said, knowing she knew this, too, in some currently inaccessible part of her brain.
We moved through our morning rituals, which go something like this:
Bink texts me a question. A typical question might be Why did ______________ (insert the name of a teacher she had back in, oh, 2001) say such-and such (she’ll repeat the words that were said to her, verbatim) in a block voice on a tears boy Friday? I create my best guess answer for that day and video it back to her. If she likes my answer, my tone of voice, or the image that goes along with the video, she’ll save it and watch it over and over. The questions can be quite repetitive, and my answers may be as well. When this is addressed, she’ll say, “I’m just trying to understand it.”
Next, she texts me a short statement, something like Mommy has pinkalicious hair. She’ll await my brief, verbal response—Yes I do! Or thank you.
She scrawls in her Dream Journal after that, and asks me to read it aloud. These entries might be just a short sentence or two, or they might be a few pages long. At times, they read like recalled dreams might, with odd events like swimming in dream halls or being told she must have a bowl of beads without holes for breakfast. More often, they seem to be just thoughts, usually of the song reference type that frequent her brain in awake hours. “The man sounded like Al Simmons and John Langstaff on Johnny’s Fiddle.”
Welcome to the magical mind of my daughter.
On this particular Monday, we’d gone through our morning triad. Typically (pre-Covid) she’d begin obsessing about some detail of her upcoming day or week that she was worried about, but in these long weeks of Shutdown when all her typical activities are cancelled, she mostly fixates on The Plan. Lunch, treat, where we will walk or hike, and dinner options. Instead, she said,” I was cold in the night.”
Fabulous. Another example of her blossoming ability to identify an experience she has and convey it in a way that others can understand, in a matter of hours or days as opposed to years! I took a good long moment to savor this, then turned to her and asked, ever so gently, “Hmmm. What can we do when we feel cold?”
Bink can tell you what day of the week your birthday will fall on in 2024. She can spot triplicate numbers on the license plate of a car that speeds by so fast I barely notice the color. She can recall the exact words and tone of voice used by anyone who’s ever scolded her, and can likely remember the day, month and year it happened, too.
The integration of other concepts that seem so basic to many of us, like knowing when to don and doff another layer of clothing or a second blanket, is much more challenging for her. The first step—identifying the discomfort— seems to be happening more often for Bink. Little victories like these seem even sweeter during this period of shutdown, with more time to notice them.