This is the first entry in a series of posts examining the life of a neurodiverse child.
In April, I wrote about “The Fisherman and the Fluke,” a wonderful play performed by children and teens with disabilities, through Acting Without Boundaries. My goddaughter’s son, Flynn, participated as a talking turtle.
Afterward, his mom, Meredith, remarked, “He got his spark back.” The production was a brief sanctuary for those struggling with disabilities in a sometimes uncaring, unsympathetic, cruel world.
Which made me think: What are Flynn’s day-to-day struggles? How does he cope? How could I possibly cope?
Why did he lose his “spark” in the first place?
Flynn has had a host of difficulties since birth, many of them involving sight. He is high maintenance, but lovingly cared for by his parents and extended family. Flynn wants to be a “normal” kid, but can’t, sometimes because of the impatience and misinterpretations of people who have been blessed with a “normal” existence.
I embarked on a quest to learn as much as I could about Flynn’s afflictions and the struggles that his parents go through and to write about them, for my own–and readers’- benefit. In these blog posts, I will share some insights.
That was an ironic choice of a word.
Flynn’s “in” sight is apparently something completely different from what “normal” people experience.
He has facial blindness, for one thing. In calm, relatively “unpeopled” settings, he can recognize others through verbal cues or familiar clothing.
His mom wrote this last spring:
We were at an end-of-the-year pool party yesterday, and Flynn asked me to tell his classmates about his disability (because he couldn’t tell who anyone was).
I told them that he has facial blindness, and he said, “And I can only focus on one thing at a time.”
This was really great info for me, as I knew this but hadn’t heard it put so succinctly. It was fascinating too because in the crowded pool, he couldn’t name a single classmate. But then, when we were leaving, and it was just a calm street with just me and him, another child walked up and said, “Hey, Flynn” and Flynn said, “Hey, Charlie!”
And I was shocked because he had just spent the entire previous two hours not being able to identify anyone (occasionally even me), and I said, “Flynn, how did you know that was Charlie?”
And he said, “I recognized his voice.”
Now imagine taking that into a school setting, especially a new school setting, as Flynn is doing this year.
In a busy environment, Flynn has to work hard to see and process, exhaustingly hard.
Matt Tietjen, who specializes in working with children who have cortical/cerebral visual impairment (CVI), says, “When you have CVI, seeing is not passive. Anything sight-related is active WORK. Relentless, grueling WORK. Tons of effort, very little payoff. It is always a big deal.”
Imagine if the “simple” act of seeing exhausted you every single day. Now imagine that none of your peers can even remotely comprehend what that is like. Instead, they get frustrated with you, impatient, maybe even angry at your lack of cooperation.
No one wants you in their group. Maybe you get called a name. Or laughed at.
“Pay attention,” an adult might snap.
When paying attention is all you’ve been trying to do.
The Q-View 