I get the word of the day email from dictionary.com. Today’s word was ken, which, turns out, is more than just the name of Barbie’s boyfriend. It’s also a word for knowledge, perception, or cognizance, the range of sight or vision.
It made me think of kin. Kinfolks. Familiarity.
Most of us walk around everyday only having ken of our own very specific worlds — our own needs, wants, and hopes, an understanding of our own individual experience — and hardly ever consider what another’s ken is in a meaningful way. I am guilty.
Why don’t you understand me?
Why are you so confusing?
Why are you making that noise or doing that thing that annoys me so?
It is autism awareness/acceptance month. I could and do write volumes about autism and my experience with it through my son, and am simultaneously rendered illiterate and mute by it. It is a powerful, wild thing. My ken of it is only what I am able to reach through watching John Henry and those he attends school with. He is now 8-years-old and we are over 6 years into his journey as a person with autism and there’s something new to learn about it and him every day. He grows, he changes, and so does his autism. And guess what? So do I. So does everyone. So does the world. He and his disorder is a moving target. I and my countless ones, as well as everyone else’s, are as well.
My son sometimes presents at his most autistic on airplanes. And we’re on airplanes a lot. We’ve been on 5 of them since Friday afternoon. Maybe it’s the frequency of the noises, the lack of oxygen, the crappy air, the cabin pressure — I don’t know — but I think his body tells him what it’s going through isn’t at all natural, because he has a tremendous amount of trouble sitting still, keeping his limbs from moving, not verbalizing almost constantly, and stimming with his hands and fingers. He rocks back and forth, slams his back against the seat, kicks or hits the seat in front of him, sings melodies, makes loud, seemingly non-sensical noises… He does a lot of things that are, I’m sure, annoying, maddening, and confusing to other passengers. I do my best to calm and quiet him. So does H., if he is with us. John Henry sometimes pulls my hair and won’t let go, so I try to remember to wear it up so it’s harder for him to get to. I’ve been bitten and had water thrown on me. I’ve changed more ungodly messy pullups in tiny airplane restrooms than you care to know about (I’ll spare you the details about both of us fitting in to those tiny spaces). I’ve told countless flight attendants what they were in for when we got on the plane in hopes that they might lend a hand if I needed it. They usually have. I resort to gummy bear therapy now and then, doling out one sugary bear at the time so he is distracted but paying attention to our supply and focused on making the sign for “eat” which I require him to make to receive the bear, figuring I’ll pay for it later and I usually do in one form or another. Hardly anyone ever says anything to us about it all except for the odd person who loses her patience and complains about the kicking to which I sympathetically apologize and try to explain away without embarrassing my son. Most people try not to look at us at all, and I try to ignore them too, staying focused on him and trying to keep a complete disaster from occurring, sometimes with embarrassing tears running down my face. I am terrified by what I don’t know about what makes him behave in such a way. Is he in pain and awful distress? He can’t tell me in any way than through how he acts, so I deduct that something is wrong, but what choice do I have but to take him with me if I have to go somewhere? What choice do I have but to have the life I have? I have changed so much… agh, the wormhole. From time to time, someone will stop me/us after we’ve gotten off the plane to tell me I’m doing a good job or about what a sweet spirit they think John Henry has, but mostly, we are utterly alone. We are on our own autism island. It’s lonely, it’s hard, it’s scary, and it’s long.
And sometimes, John Henry is heaven sent, a perfect angel that sits quietly with his headphones on and watches a movie and holds my hand.
None of us are reducible to a pile of traits.
We are all something to understand, we are all puzzles. But having no keys with which to decode someone’s behavior or actions, our ken of each other is far weaker than it seems it could be, and far weaker than it seems we should have the grace to try to reach for. Autism awareness/acceptance isn’t about understanding a list of attributes, oddities, or symptoms, it is, at the end of the day, about just what the words say — having acceptance of each other, showing kindness to each other, and having cognizance and openness toward each other and our idiosyncrasies, things we ought to be extending every month to every person, not just to the ones we’re told to light it up blue for in April of every year. Yes, some of us need a little more understanding, kindness, and openness than others, but are we not all different in some way? Bearing a bit of discomfort sometimes, extending something as simple as a smile or just not looking away and pretending others are invisible and remembering that someone else might have far greater unease than we do helps us reach beyond what we can make sense of and expands our ken. I dare say it expands our kin.
Happy Monday, y’all.