Thursday, March 20, 2014

Why Does Collin Do That? - Part 2

Why Does Collin: Keep His Eyes Closed?

The trick answer is that he doesn't. Ninety-five percent of the time when Collin's eyes look closed during waking hours, they're really open a tiny slit.

But why?

1. Size
Collin's eyes are just small. Like his dad's. So even when they're "wide" open, they look small. I love to tell the story about when the neonatologist wanted to run some tests on Collin in the NICU because some of his facial features - especially his eyes - were indicative of particular genetic disorders. Then Kyle walked in the room and the doctor looked at him and said, "Nevermind."

2. Light
Collin is super sensitive to light - both bright lights and changes in light. One sunny morning after a big snow this winter, I stepped outside quickly to go get something but had to stop in my tracks. The brightness of the sun on the snow was so blinding that I literally could not make my eyes open. I had to just stand there, waiting for my eyes to adjust and as I did, I thought, So THIS is how Collin feels. Except a lot of the time. He has transition lenses in his glasses, which have helped somewhat, but they are activated by UV rays and so don't help in a brightly-lit indoor setting. When he was a baby and on all of those hellish anti-epilepsy meds that made him even more irritable and sensitive to everything, he simply didn't open his eyes at all. Now, at least he keeps them open whenever he's awake, though it doesn't look like it to many people. And when the lights go down, the eyes come open.

3. Overwhelm
Collin is cortically blind. This means that even though his eyes can see something (pick up the signal of the image and send it to the brain), his brain can't necessarily see it (process it into something that makes sense). This has improved quite a bit over the years, but I remember our very first vision therapist explaining that seeing for Collin is as exhausting as physically using his muscles. Imagine having to work out all day every day.

So keeping his eyes mostly closed limits what he has to process. It's a bit like when you're watching a really intense scene in a movie and you put your hands over your eyes and peak out from between your fingers (come on, I know it's not just me): having that visual framework makes the intensity feel more manageable somehow and also keeps you that much closer to blocking things out when they become too much.

This is part of why an iPad is so crucial for Collin. It draws a line around what he has to make sense of. Many people notice that when the iPad comes on, Collin's eyes open wide. It's not because he isn't interested in anything else (though I'm sure there's an element of that - he IS a five-year-old, after all), it's that it is so much easier for him to understand what he sees on a screen with a border.

4. Habit
When you are used to doing something one way since the time you were an infant, it's hard to break out, regardless of how you might change developmentally.

Add the closed eyes to the low-tone body and you get thousands, maybe millions, of comments about Collin being sleepy or asleep. As you can imagine, it is rarely a good time to explain all of this, so I just smile.

I know that Collin's closed eyes are really hard for some people. I understand it. So much of our interaction with kids is dependent on their big eyes, on getting them to look at us. And that just doesn't come naturally or easily to Collin. But, by understanding the reasoning, it gives you a chance to take steps to help him if you want to get that eye contact:

1. Lower or block out the lights. You can turn lamps down or off. You can turn him away from the sun or other bright lights.

2. Get close and hold still. If you want Collin to look at you, make yourself as easy to process as possible. Get your face about an arm's length away (his arm, not yours) and stay there. Talk and/or make funny faces and sounds to help him focus.

And please don't get antsy or feel deflated if it doesn't happen right away. He isn't sleeping or ignoring you. He really does want to look at you. He just needs help and time.