I sit in a coffee shop, my mind wanders and suddenly I see the world through Evan’s eyes. I immediately notice the woman with the “serious curls,” seated at the table next to me. I hear the swooshing of the cappuccino machine. I notice some lights are track lights, some are recessed and some are well, I don’t know what they are because Evan isn’t here to tell me.
I drive to the grocery store and I hear a siren. My heart races because I know how much the sound can drive Evan absolutely insane. But I breathe again after the realization that he is not in the car with me.
While I can sometimes view the world through my son’s nine-year-old eyes, I know I will never be able to see what the world truly looks like from his perspective, because his perspective is shaped in many ways by his autism.
We snuggle each night, often sharing the same comfy pillow. Our heads are so physically close, yet there is no way inside. I have no idea how much louder things sound, how much brighter things look or how much stronger they smell to Evan. I may never understand how he can remember that we heard a certain Beatles song on the way to a new doctor or how he can hear a particular song and then play it on the piano.
While I can understand his fear of thunderstorms, his love of candy, and excitement over his favorite song on the radio, I may never understand why he hates when people say “Einstein” or “that’s the way.” He can’t tell me why curly hair makes him squeak with joy, and I have no idea why one minute he’s the best behaved kid in the class and next he’s knocking over desks.
Every once in a while I get a really good glimpse into his world, and it’s a place that is unbelievably fascinating. He invites me in without knowing it. I want to stay longer, but that’s not always possible.
Sometimes the invitation comes in the form of a picture.
Why do you feel sad? I feel sad because Jessica was being mean to me.
Sometimes he can answer my why question with a response other that “I don’t know.”
For years we tried to figure out why he was petrified of the moon at night but over the moon excited (pun intended) by the sight of it during the day. Finally he was able to tell us that the moon was too bright at night. I can only imagine that looking at the moon through his eyes is like staring into a light bulb. It’s awkward, uncomfortable and it’s something we just don’t do.
Sometimes it’s the questions he asks that help us better understand him.
A few months ago Evan wanted to know what embarrassing means (most likely because it’s a word his siblings Noah and Jessica often use to describe him). Even after we defined “embarrassing” and gave him examples, he simply could not grasp the concept of an emotion that he has yet to experience.
“Does it hurt when your face turns red?” he asked.
I like to play detective and figure out what makes my son tick. I actually like to do this with all my kids because their perspectives are so refreshing (and frustrating). Their innocence is heartwarming and their ideas inspiring. With Evan, it’s obviously very different, sometimes extremely complicated. But, it’s always incredibly fascinating.
So please Evan – keep drawing, keep answering my questions as best you can and keep asking yours so we can continue to understand more about what makes you so special.