Today being Saturday, I let myself indulge, feeling guilty for not overtly structuring the day and putting myself higher on the priority list. Long morning writing. Extended coffee chat with the hubby. This mean Will and Jeff had to self-start – which they did. Will surprised me by going to get his own cereal – he usually waits for Jeff to start – and then realizing there were no spoons in the utensil drawer, opened the dishwasher, emptied the utensil bin, then continued on with his cereal-making. Progress!
Dad intervened on cleanup which Will would be delighted to skip, and we proceeded with showers, the noon Family Virtual Dance party, now a fixture in our Coronvirus days, and lunch. We did a little cleanup and I snuck a quick nap, again guilty that my evening insomnia made me exhausted. In seeing Will sitting in his recliner chair rather bored waiting for me, I used his AAC software, TouchChat, to present several choices. He chose a walk to Dunkin Donuts, our new family favorite.
We made it a real hike of sorts, wearing a backpack to carry back a gallon of milk on the way home. Dad even accompanied us today, the first time since he’s been feeling better. Meanwhile Jenn was texting us as she walked the streets of Providence RI, her town. Our family was virtual, yet together under the slight grey flatness of increasing clouds, yet light upper-40 degree breezes. Passing neighbors and friends, it was like a party the minute you opened your door. Everyone honored the 6-foot maxim yet the usual “Hi Neighbor!” took on new enthusiasm. We were all craving each other, and comfort of knowing we were sharing our sacrifice for the common good.
Long-legged and sure-strided, Jeff was at least 30 feet in front of us along the roadsides, and we’d take turns calling to him to stop so Will, always slow, could catch up. I was so proud of how well Jeff listened, and stayed safely along the edge. Always the sherpa, he carried the milk-laden backpack first and barely blinked at its weight, til I and Dad took our turns. Like a comfortable shoe we were back at our trailside adventures. My mind drifted to other ways I could enhance the new routine – maybe an ice cream purchase at the convenience store. Or maybe a different loop that led to the Wendy’s across the interaction.
Once home, the day’s miracle happened. It was 5 pm and a little early for dinner, so I presented the guys with some next choices – fold shirts or cleanup, choosing the former. Jeff cocooned himself in his bodysock, a sign he was tired, so I decided to try the Feelings board of the AAC interface with Will who sat looking at me from his reclinerly perch, eager for the activities that to him frame a connection. The software presents 4 options and speaks them out loud: great, very good, OK, or not good.
I asked Will how he felt about the Dunkin walk – the iced coffee – the Chex Mix snack we just had – and then through in a few tests, like how does he feel about cleaning the kitchen.
Wonders! How did I not know this man, my son! Will made varied, and seemingly accurate Feeling choices! His weren’t the indiscriminate button-pokes of a 5-year old who liked to hear various sounds over and over. This was genuine communication!
I felt tears well up thinking that for years my son was an enigma, that his feelings were bottled inside, and only escaped with flappy hands or dancy jigs or clenched teeth. He knows what he feels, and knows the words that accompanies them. An open door to his soul!
After dinner as I sat reading the newspaper Will leaned over to me on the sofa and twacked my arm to get my attention. He doesn’t do that often, so I was keen to ask and probe for what he wanted. I wish I could have found it – I asked with words, grabbed the iPad and offered TouchChat choices. I’m not sure Will truly wanted to fold clothes before snack time, though we did for a bit.
Our new quarantine existence has stripped time and tasks to the essentials of what really matter. On Day 12 I didn’t cure autism’s language blight on my sons. But I saw glimmers at what could be done, and acceptance from them as well as me that we could make it through this new normal, and be better than when we began.