Collin is attending Vacation Bible School this week. It's his first time in an environment with lots of other kids his age, so as he makes friends he's also getting a lot of questions. So, in the spirit of getting to know Collin better, I thought I would continue with this "Why Does Collin Do That?" series.
One of the most common questions we get is: Why doesn't Collin open his eyes?
The trick answer is that he DOES open his eyes. Ninety-five percent of the time when Collin's eyes look closed during waking hours, they're really open a tiny slit.
Collin's eyes are just small. So even when they're "wide" open, they don't look very open. Just like his dad. I love to tell the story about when Collin's neurologist pumped my German-Italian husband about any Japanese ancestry he might not have shared about. Now that Collin has been diagnosed with Wiedemann-Steiner Syndrome, though, we know that the shape of his eyes is also partially a product of his unique genetic makeup.
Collin is super sensitive to light - both bright lights and changes in light. One sunny morning after a big snow last winter, I stepped outside too quickly and 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 pupils to adjust and as I did, I thought, So THIS is how Collin feels. 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. But when the lights go down, the eyes come open.
Collin has delayed visual maturation. 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 six-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.
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, you have the chance to take steps 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.
3. Be patient. Please don't get antsy or feel deflated if visual contact doesn't happen right away. He isn't sleeping or ignoring you. Sometimes he'll sneak peaks out of the corner of his eye first. Sometimes he gets so excited having someone talk to him up close that his muscles tense up and he involuntarily looks away. But he really does want to look at you. He just needs help and time.