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.

The Noah's Ark Book

Lately, Janey has been asking me to read her books.  Or if sometimes not exactly asking, at least listening willingly when I read her books.  This is quite new.  Her school has a reading contract due every Friday, where a parent has to write down four books they have read to their kids during the week.  With William, years ago, this was very easy---I had usually about 50 books to choose from, and although Freddy wasn't quite as into books, we still certainly always read more than four in a week.  I love to read to my kids.  It's just about my favorite thing to do.  But with Janey, although I always had read her the four, and almost always more, it often was more like me reading the book while she didn't listen and ran around the house.  Now, though, she is sitting by me, listening and even often gesturing me to point to the words as I read.  That just about freaks me out with happiness.

A few days ago, I was reading her the Lucy Cousins version of Noah's Ark.  Lucy Cousins is the artist behind Maisy the Mouse, and I love her books.  On a few of the pages, there is a big spread with pictures of all kinds of animals.  When we got to that page, on impulse I started asking Janey to point to the animals.  Well, she did.  She pointed to every last one I asked for, and that included such animals as flamingos and scorpions.  She pointed to them quickly and easily, eager, I think, for me to stop asking questions and just read.

When Janey does things like that, my emotions and thoughts run wild.  I am very proud and happy, of course, but I also am frustrated.  Janey obviously knows so much more than she lets on.  WHY does she talk so little?   Why can a day go by and you'd have no idea she knew such basics things as her brothers' names or any words beyond her few preferred ones?  How can she knows what a lizard is, what a ladybug is, but never, let on?

I don't understand why Janey's speech is so restricted.  She CAN talk---the fact that she can recite whole poems and, when push truly comes to shove and there is no way to get around and she really needs to ask, can she ask us by name for such foods as pickled cabbage and duck sauce?  It seems like every new word she actually uses verbally without it being part of a recitation costs her dearly, and she needs to preserve her savings.

On my better days, Janey fascinates me.  I wonder what it's like in her mind.  I wonder how it feels to have all that knowledge floating around there and usually no way to get it out.  But on my less better days, she breaks my heart.  I know how frustrating her life must be, far more frustrating than it is to be me, on the outside, wishing I could get in and truly understand her.