This is one of my favorite times of year, because it’s March Madness. College hoops has this massive tournament every March, and even when my teams are terrible and don’t qualify, I still enjoy tuning in. This year, Tess has been watching with me.
This is new. I can’t tell whether it’s because she connects it with the basketball team she’s on and recognizes that it’s the same game. But the sounds are there: the squeak of sneakers on the court, the bouncing of the ball, the roar of the crowd, the buzzer as time expires. She’s watching. And she stays with it for a long time, rather than getting restless and getting up.
The Movie Experiment
On a related note, my wife had this idea to watch Pixar’s Inside Out with Tess, to see if she’d be willing to sit and actually view it. Often we find that she’s unable or unwilling to watch our TV, since she’s on the couch and the screen is across the room, and even with her glasses we aren’t sure what she can see. That’s why she typically watches YouTube videos on a laptop, with the screen on my lap and just a foot or two in front of her.
But for Inside Out, we put it on the TV. And she watched it. She sat between my wife and me, in a soft cocoon of blankets, and watched a movie. We didn’t screen it from beginning to end in one sitting. We did it in parts, about 30 minutes at a time. But this is a first: she sat and watched all the parts of an entire feature-length film.
What It Tells Us
It’s interesting to stand back and think about all the components of a movie. The voices and sounds. The way they use music. The characters and storyline. And then there are our reactions, the way my wife and I laugh at certain scenes even though we’ve seen them before.
It’s this full constellation of sensory and cognitive experiences connected to film that I think is drawing Tess in and keeping her attention. She understands so much more than she used to. More than people give her credit for, that’s for sure.
We already have a bunch of other animated films lined up to try next with her. Each one of these small moments tells us something about what’s happening in Tess’s mind, about how she’s processing the world around her. For families raising a child with an intellectual disability, these milestones don’t always look like what the parenting books describe. But they’re no less extraordinary.
Tess has Hao-Fountain syndrome, a rare genetic condition caused by a mutation in the USP7 gene. You can learn more at the Foundation for Hao-Fountain Syndrome (usp7.org) or by listening to the Stronger Every Day podcast.