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Saturday, April 3, 2021

The Bison, The Scorpion and The Mystery

Janey watches certain videos on YouTube over and over and over and over. She has become very attached to my old decommissioned iPhone, and like many teenagers, has it by her side almost all the time. Her favorite video right now is a Cocomelon one, and if you don't know what Cocomelon is, you are lucky. Their videos feature a too good to be true family, especially the youngest, a strange looking toddler called JJ. JJ goes to an extremely fancy preschool---they go skiing, get tap dance in a studio, go on a submarine and learn to surf. In the video we hear all day every day, it's the Winter Show and Tell time, told about to a tune that is sort of like The Twelve Days of Christmas, but not exactly. JJ has forgotten his project, and his mother is going to bring it later. I wish I didn't know any of that. I am tortured by the video from start to finish. But I also generally believe in letting Janey pick on her own what she watches, and I've read much from others with autism saying that watching the same thing over and over can be very comforting. So...most of the time I just try to ignore it.

 One afternoon, however, I was at my wit's end. I took the iPhone and insisted on a break, and quickly, to try to keep Janey occupied, grabbed my laptop and looked for something she might like. I found for some reason an animal quiz, showing pictures of various animals to identify. The first one was a bison. I didn't think Janey would know what a bison was, and I was right. But what she called it was what really blew my mind. She looked at it for a minute and said "That's a scorpion" The bison in question had horns that folded back on themselves. Looked at close up, the horns looked exactly like the tail of a scorpion. 

 So many questions raced into my mind. How in the world did Janey know what a scorpion was? Why did she focus in on that part of the picture and make the connection? And how did she come up with the word "scorpion", when often she has a very hard time giving the correct name to the correct one of her two brothers, when her talking is so very limited, when she watches a mind-numbingly dull video hour after hour? How the heck does her mind work? What does it feel like to be her?

 I've wondered these things for many years, of course, but lately, it's hitting me more. A lot of it is the fear that Janey is bored out of her mind a lot of the time. It's not like we don't try to expand what she does. The house is full of books and toys, and I try very hard to engage her with them. We take her for multiple rides a day (the only other activity besides the videos she asked for much). We would jump on absolutely any interest she showed and go with it as far as we could. But she is hugely resistant to anything but the videos and car rides.

 It would almost be easier to think that her mind isn't full of knowledge. It truly bothers me to think of all she knows that never gets shown or used. I think about how I'd feel watching the same thing over and over, and I think I'd truly feel like I couldn't take it. I want Janey's life to be full and interesting. So what do I do? And why does it take what almost feels like a party trick to get Janey to let us know what she knows? We've figured out when she really wants a car ride, and we aren't ready to go, she'll answer almost anything we ask, somehow hoping that it's part of the routine to get us going. We don't say that, and we would never force her to answer questions to get to do something she wanted, but still, it can be interesting. Today, in that situation, she gave her phone number, her address, her full name, and when we asked "What planet do we live on?" she confidently answered "Jupiter!" How does she know that's a planet? How is she able to easily recite a 10 digit phone number but not always her name? How can I help her use her intelligence and knowledge to have a life with more variety? What can I do? What does she WANT me to do?

 I'm mostly ignoring Autism Awareness or Acceptance or whatever month. I am as aware of autism as I can be, and I fully accept Janey's autism, and I can't do much about anyone else but myself. But what I really want is to UNDERSTAND Janey. What is her mind like? I wish that there were more studies of kids like Janey, not just those kids with autism that can speak for themselves. I think it's vitally important that Janey and her peers, those with severe autism, with non-verbal or low verbal autism, be understood, that we know how they think so we can help them live their best lives. It means more than anything to me to be able to give Janey the best life possible, but in so many ways, after all these years, she's still a mystery to me.

2 comments:

skippy said...

The repetitive videos can end up being a form of torture if you play them enough. They're just a pacifier for older kids. Janey does come across as girl with a strong will that is difficult to divert or bribe. My daughter has plenty of time on her hands to do other things and luckily she's not as stuck on routines as many autistic kids are. We try to go on walks on public trails in the woods. Usually, there aren't many hikers around so she can stim and make noises and other people can just walk around us if they don't like it. My daughter doesn't have much muscle tone and we don't to see her zoned out watching videos and gorging herself on Oreos and Doritos while on the couch. I don't want that to be her future (yeah I know plenty of Americans who are happy that way) will at least prod her now to do more because she gets into a habit of being isolated. She's a in social group on Saturdays but doesn't mingle very well.

pianorox said...

She knows so much more than she can show. I would be just like you, wanting to understand her mind. It is fascinating the way the mind works.