Comparing Fishy to a Typically Developing Child
There’s an amusing anecdote I never got around to relating. One of the first times I babysat for Fishy, he had a friend over for dinner– a petite, tow-headed, adorable little girl who I’ll call Blondie.
The differences between them were instant and striking. At almost 3, she was approximately the same size as nearly-4-year-old Fishy, although their proportions were different. She was able to walk and run independently, and pretty much talked a blue streak the entire time she was there. She could laugh, something Fishy doesn’t do (although I never think of it unless there’s another kid around who does).
She was, in short, a perfectly typical 3-year-old girl. I found her frankly exhausting.
She wanted to talk at me, constantly, and she wanted me to listen, look at her, pay attention, respond. I did a lot of smiling and nodding. I could only understand about half of what she was saying, due to the speed at which she talked, combined with the slight slurring of pronunciation that is common of young children. And I had trouble concentrating on her chatter while trying to make sure Fishy ate his dinner.
She demanded things constantly– not in a bad way, just in a very energetic way. If Fishy had milk, she wanted milk, and she wanted it right away. When Fishy got a veggie puff (snack food) for eating the required number of bites, she wanted one too. Then another one. And milk. And to tell me another story. And another puff. Make that two.
I tried to keep up. From across the room, her mother reminded her to say “please” a few times. Mostly, I was too busy to care whether she was being polite. Tried to give Fishy his eating instructions at the same time and reward him on schedule for following them. Made Blondie eat 3 bites to earn a puff, too. Fair is fair. She barely stopped talking long enough to eat, and she certainly didn’t stay seated for most of the meal. Reminded me why I have no desire to ever be a parent. She ran me ragged in a matter of hours.
Don’t get me wrong, she was cute. And sweet. Fed me a bite of her mac-and-cheese from her tiny spoon. Adorable. Made charming mistakes in her speech, as little kids do. Told stories from her own funny little perspective. “Look, Mommy,” Blondie said when she saw Fishy with his shirt off, “He has two bellies!” (She meant belly-buttons. She was looking at the little pucker in his abdomen where the distal end of his shunt is. It was a nifty interpretation). I imagine Fishy’s parents, as much as they love him for who he is, might envy other parents specific moments like those, and I can understand why.
After dinner, I tickled Fishy with a sensory toy I had brought over and he grinned. Blondie wanted me to try it on her and she shrieked with laughter and wiggled like crazy. And then wanted more. I hadn’t realized how relatively not-ticklish Fishy is until I saw her reaction.
Her Mom sat on the floor facing Fishy and he did his excited head-shaking thing– head whipping side to side, arms flapping out to the sides. I was happy to see that she understood this as an expression of fun and mirrored him.
She asked me if I had worked much with kids with disabilities before. “Not really,” I told her. I said something about how I worked more often with adults with disabilities, and I can’t for the life of me remember if the way I phrased it made it clear that I meant I had adult colleagues with disabilities rather than that I assisted adults with disabilities (the latter has been true in the past, but the former is more accurate at the moment).
“Is it different?” she asked, and I wasn’t quite sure what she meant, or even how to ask her to clarify. I fumbled something about how my experience with disabled adults definitely gave me some skills that translate to working with Fishy, like being comfortable with nonverbal communication, but noted that I don’t really think of people with disabilities– children or adults– as a category in any way, but simply approach each as a unique individual.
“That’s wonderful,” she said. Is it? It seems perfectly normal to me.
I was, too, struck by how similar the kids were in some ways. They took bath-time together, and both had a blast. I was pleasantly surprised to see Blondie’s Mom initiate with her exactly the same game that I play with Fishy– scooping up a little plastic cup of water and holding it over the child for a moment of anticipation– “Water on your…. “– and then dumping it suddenly– “Head!!” (or arm, or shoulder, or tummy, or hand, or whatever). She said it exactly the same way I do, too. I guess some things are just universal.
I felt mildly superior on Fishy’s behalf at bed-time. He got ready quietly, listened to his story, signed +good-night+ to me, and was silent almost as soon as I tucked him in, while from the other room, Blondie was vigorously protesting the mere concept of going to bed.
(To be fair, I’ve since learned that I came into Fishy’s life at a very pivotal time. A few months before I knew him, getting him to sleep was an exhausting and lengthy chore of rocking, soothing, and so on. He’s made amazing progress. But a point in his favor without qualification: one of the verbal skills he lacks completely is the ability to whine).
All in all, the evening provided me with a very useful basis for comparison, and my conclusion was clear: I like Fishy a lot more than I like “normal” kids. So I guess I’m not normal, either– but then, we knew that about me already.