Sundays can be rough. Waking up at 7 am to sit in church for hours is going to be tough on anyone, but it hits young kids the hardest.
We manage to get Kella through the first hour–full congregation, no breakout for kids–only with a constant stream of snacks and quiet activities to draw her attention away from the person at the lectern drawling on in terms she doesn’t fully grasp. For Finley…well, we’re lucky if we can make it through the first fifteen minutes.
This week’s snack had Kella really excited. On Saturday, we picked up a new kind of Goldfish, pictured above. “It’s not chocolate,” she admitted as she pulled the box off the shelf, “but I think it’ll still taste good.”
When the moment to eat the delicious confection finally arrived, she squirmed with excitement. Her hands shook so much that she couldn’t even open the package. I had to do it. Then she glanced inside, and frowned.
“Where’s the frosting?”
“There isn’t any frosting, Kell,” I explained. “They just put it on the the picture there so you could get an idea of the flavor.”
“Ug,” she said as she pushed it away.
“Don’t you want it?”
“No,” she grunted in disgust, “I’ve lost my appetite.”
Later, in one of the Sunday School lessons, our bishop brought up how important it is to realize we can’t know what’s going on in someone’s life, even if from the outside they look amazingly put together. Or, as I’ll call it from now on, The Goldfish Lie.
That brings me back to getting through church with Finley. Or getting through anything with Finley.
Here’s a pop quiz: what do you call a child in a wheelchair who can’t walk? What about one missing a hand who can’t hold a pencil? Or a child with down syndrome who struggles to read? Would you call any of them lazy? Would you say they just weren’t trying hard enough?
I hope not. Because that would be insane.
What do you call a child you looks totally typical that can’t sit still, randomly screams at others, bursts out in a rage at the drop of a hat, and punches other people for seemingly no reason at all?
Based on personal experience, many call that child a product of poor parenting.
It’s the Goldfish Lie. Strangers (or, even worse, sometimes not strangers) pass judgment based on the outside packaging, not bothering to find out what’s inside.
I can’t remember if I’ve written about this before, but my little brother has some developmental difficulties. He also looks typical, except for one minor detail–one of his eyes droops. He was born without the muscle used to hold it open.
Side note: when my little brother was a baby, my dad ran into NFL Hall of Famer Steve Young. Steve Young mentioned that my dad was lucky to have a sleeping–rather than screaming–baby. My dad, being the guy that he is, decided to embarrass the quarterback by pointing out that Mr. Young had missed the baby’s other, completely open eye.
I’ve had conversations with my mom about the blessing it’s been that my brother had that small droop. When people meet him, something triggers in the back of their mind, a “difference” alert. So when my brother acts atypical, there’s little cognitive dissonance to work through.
Not so with Finley. He does have a scar on his head, hardly noticeable when his hair grows in. Otherwise, he looks good. He sounds good, too, with speech typical of kids his age, if often sprinkled with atypical explanations (we were told to not let him watch disaster videos because his talks of flashover and mortality rates frightened the other First Graders).
All this leads to a normal looking package. So when he acts up–which is always–it leads to sidelong glances, judgmental comments, and angry quips demanding if we know what our son just did.
All those I can do without. It’s not like we’re unaware of who he is. It’s not like we don’t already have to be on constant alert at the park lest he punch another two year old for not moving down the slide fast enough. Or punch his teacher because her face happened to be near to him when he was frustrated.
What makes the situation more difficult is that some kids do work through those problems perfectly fine. Person A does certain things with Child B, and Child B works through her problems. Child F has somewhat similar problems that his parents haven’t helped him through, so therefore parents of Child F must be screwing up.
Here’s the thing, though. Child B isn’t Child F. This is a very difficult concept for a lot of people to grasp. They’ve come to grips with the fact that the Vanilla Cupcake Goldfish don’t have frosting on them, but they now see Child Package B and assume Care Package B is the solution to Child Package C, D, and F.
We’ve had 5 ABA therapists in the past year or so. Of them, 2 of them said Finley is a very difficult case, and the other 3 haven’t been with him long enough to feel comfortable telling us how frustrating he can be. Or at least to tell me.
Each of us wants to believe we’re in control of the world around us. I think that’s human nature. 1 + 1 = 2. The sun will rise tomorrow. If I sit in my lucky seat, the Broncos will win. If the packaging has frosting on it, the product will too. Kids who look a certain way should act a certain way, and if they don’t, the solutions are easily found on WebMB. Etc.
It’s hard to get past that. I make rash, erroneous judgments just like the next person. Even though we’ve made a lot of strides forward in these regards over the past decade or so, we’re not there yet. We need to be able to get past the packaging, take a look inside, and really try to understand who that person is, even if reality doesn’t match up to expectation.
Of course, there are a few who see the contents and still turn away with disgust. Those people make me sad.