No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

The Slightest Hint of Negative Emotion on TV

I'll have to admit I'd love it if Janey would watch TV passively.  At the end of a long day, it would be a dream to have her just sit there glued to the screen, watching whatever came along and giving us all a little break.  If that makes me a horrible mother, so be it.  But it never happens.  Janey's TV watching is an interactive, restless and volatile experience.  The videos are stopped and started, the shows turned off and changed and turned back on.  Almost always, at some point during a video or show, Janey screams and angrily turns everything off.  For a while, she felt the need to smash the TV while doing so, but after long enough of us just unplugging everything when she did this, she now turns it off more delicately.  Then, due to today's complicated mix of Netflix and Amazon Prime and so on, to watch again, she usually needs some help (partly because I had to install passwords on Amazon Prime after she bought several expensive seasons of shows on her own).  Therefore, lately when she's watching TV, I watch with her, knitting or sneaking in a little reading between putting shows back on.   This has let me figure out what seems to trigger the need to freak out and turn off shows.


Basically, Janey hates characters on a show to demonstrate any negative emotions.  Strangely, this is more so the case for subtle negative emotions.  If the characters are very plain in what is making them upset or mean or angry, it's usually okay---she watches "Courage the Cowardly Dog" happily often, and there is some wild and strange emotion there, but it's very, very obvious.  She can happily view the bizarre enchanted evil book in "The Care Bears Movie",  but she loses it at the merest hint of annoyance of Little Bear's antics shown by his parents.

Janey's favorite shows are usually very mild ones.  Right now, she most often is watching "Little Bear", "Kipper" and "Oswald".  All of them were originally on Nickelodeon for preschools, and trust me, they don't feature a lot of fight scenes or confrontations.  But Janey picks up on anything less than perfect harmony, and seems horribly upset by it.  For example, in one episode, Kipper's friend Tiger is fishing.  He is not catching anything, and at one point he says to Kipper "Let me tell you something.  Fishing is very, very boring"  Tiger is a bit of a malcontent, and he says this in a slightly annoyed voice.  Janey freaks out.  She has to turn off the show every time at that point.  Or Oswald's friend, the penguin Henry, another slightly grouchy character, turns down Oswald's offer to go to the beach, saying he doesn't like the water.  His very minorly prickly tone causes Janey to start crying and turn off the show immediately.

Janey's discomfort with such slight shows of negative emotion seems to go against a lot of things people think about autism.  Isn't she supposed to be unaware of subtle emotions?  And in fact, stronger emotions often seem to not affect her a bit.  Freddy and I watch a lot of "Star Trek Voyager", and there are some fairly dramatic scenes in that show, but Janey never seems to mind.  My theory is that Janey feels scared when she doesn't know quite why people are acting the way they are.  If it's very obvious, that's okay---she can classify that.  But if the scene is more subtle, and her hugely sensitive ears pick
up a tone indicating something is happening she can't quite put her finger on, that is scary.

Lately I have tried to talk to Janey about the scenes that upset her.  Yesterday, when watching Little Bear, the mother bear came home after Little Bear and his friends had messed up the house.  They cleaned up most of it before she got in, but she realized things were out of place and said something like "Little Bear, why is there a croquet ball in my knitting basket?"  Her tone was enough to get the TV shut off.  I said "Mama Bear was a little upset there, wasn't she?  She figured out that Little Bear had been a little silly while she was gone.  But she understands that bears sometimes get a little silly.  She isn't that angry"  Janey gave me one of her deep, intense looks, one of those looks I love that seem to say "Hey, you hit on something there.  You got me"  We put the show back on and watched the rest together.

Realizing how sensitive Janey is to even mild TV shows makes me realize how the world must often feel to her.  It's a confusing, overwhelming place, and often, just shutting it out must feel like the best strategy.  I can see why she screams and lashes out when it gets overwhelming.  It must be easier to put our her own strong emotions to cover up all those swirling confusion messages out there.  I hope I can somehow help Janey a little to be able to face this emotionally complex world, but it's not going to be that easy.