I tend to think of Zane in shades of color. The moods and thoughts that cross his face are less flickers of change than slight alterations in tint during most of the day. And then there will come a burst of laughter and squeals of hilarity as well as a series of short jumps from him- maybe from a joyful memory or some private joke. Or maybe he thought of something he looks forward to. Whatever it is he isn’t going to tell me; not because he is a teenager and I am an annoying adult he mostly gives the side eye to, but because Zane does not speak in words. Occasionally he becomes suddenly sad and will even weep and seek affection he usually spurns but I can’t know why usually. All of these triggers of joy and sadness tend to be internal and inaccessible to me. I do know that if a book we are reading has a particularly heart wrenching passage it makes him wilt in sorrow and then he walks away and doesn’t want to read that book anymore. This happened when I was reading him the part in Catcher in the Rye when Holden Caulfield is having a breakdown and keeps begging his dead little brother not to let him fall as he loses his sense of space crossing the street. Zane couldn’t stand that though he had enjoyed the rest of that novel. His feelings can be quite deep and all encompassing though I can lose sight of that in the comparative serenity his facial expression displays most of the time.
Zane can linger a long time looking intently at something that seems uninteresting to those of us who are more “neurotypical.” I imagine he sees patterns or details we don’t see. His favorite place to be is outside in the backyard in his “spot.” Zane feels best in nature. So most of our time together is outdoors. He hardly ever cares what kind of weather it is either. He just wants to be in it. Its not as if he isn’t paying attention to the weather although I think sometimes he isn’t. Nor do I think it is simply low body awareness. Maybe nature is his friend. Maybe he wants to take part in life that way as often as he can. It took me along time to realize that the melodic squeals he makes are an imitation of a backyard bird call we often hear. He amazes me all the time.
He has a little trouble with his gait but he still loves to lope along on long walks and he can really walk fast, especially if I play Cat Stevens on my phone. That is our walking music usually. Sometimes he stops to examine the leaves of a Dwarf Yaupon or a Crepe Myrtle along the way. Nature is his buddy and he’s checking in.
Another way he takes part in life is through love in his family. Zane’s parents and his two older brothers talk to him respectfully and care for him in a matter-of-fact way. Something he loves and is always very happy about is when everybody is home. He loves having his family around him. He loves them all and his occasional outbursts of affection with them are touching. He is loved and supported at home. He goes wherever he wants to go and eats what he wants to when he wants to. His hands don’t work very well so he needs help with this though he is able to feed himself. He likes to gently take my wrist and set my hand on the food he wants me to make for him.
Zane has a sense of humor. His Dad was late to dinner one day and his mom was joking with Zane, “Well it was nice knowing Daddy. We’ll miss him but that’s how it goes. Guess he can move in with Billy.” Zane screeched with laughter. When his dad was finally at the door, Zane put his fingers in his ears in preparation.
He can answer yes no questions. We put our hands out and show which hand is yes and which hand is no. “Do you want Zaxby’s for dinner? Yes or no.” When it comes to Zaxby’s he will always slap the yes hand. Usually he will add “Ah” which for him communicates yes as well, perhaps for emphasis.
Something Zane loves to do is shake the bundle of colorful ribbons he always carries, look at it and put his mouth on it. This activity is called “stemming” and he enjoys it very much. Now and then we go to his ribbon closet and cut new ribbon of the color he is in the mood for.
His other great love is his stuffed friend, “Donkey.” Apparently that guy is hilarious. Sometimes they joke and party late into the night and Zane’s parents can’t sleep.
Zane enjoys music and it seems to be a great comfort to him. He likes opera and classical and country. He does not like Nina Hagen. His greatest love is The Wiggles.
His mother gave me a stack of books to read when I first started working with Zane to help me understand him. Some of them had some great ideas for communication and learning. I used to try these ideas out back then. Yes he can spell words on a letter board. But he wouldn’t for me. He would just throw it. He would choose the right answer when I tried a certain technique with him. His cooperation was grudging and I noticed he seemed to hate it when I said, “good job.” It was as if he were saying, “Lady I’ve been at school all day. This is not the relationship I want to have with you.”
One of the books his mother gave me when I was hired was called The Reason I Jump by Naoki Higashida. Naoki is a nonverbal and autistic teen just as Zane is. He wrote his book using some of the techniques I had read about using a special computer set up for his letter board style of spelling out words. The young man writes about what it is like in his interior world and why he does the things he does, and what he wishes people would understand about him. It was beautiful; mind and heart opening to read. It occurred to me that since we had been reading aloud Zane would possibly identify with it. So we began reading it. The result was electric.
He listened intently and wouldn’t let me stop reading it. He would bring his head closer to me to listen more intently. We read it all day and during my entire shift the next day. At times he would uncharacteristically grab my shoulders or hands and stare at me with full eye contact with extreme excitement. His parents came out to see him and talk about it. We were all almost crying. It was as if Zane were exclaiming, “This is me! Please listen this is me!”
It was quite a moment, and one I know I will always remember.
When Zane is tired he puts his head on my shoulder and becomes unusually affectionate, even hugging me.
“Zane are we good friends?” I ask. He says, “Ah!” and he lets me hug him.
*Author’s note: I obtained permission from Zane’s parents to publish this piece.
Every day I try to get out with Mac if it isn’t too cold, too hot, or raining. We enjoy our walks together. I pray and sing and talk to him. Sometimes we are quiet, or he may express his joy…. or annoyance, as the case may be.
Bethany Hang Out 