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Thursday, March 3, 2016

Janey's post

What would Janey want to say in a blog post, if she could write one?  That has been on my mind lately.  I am a voice for Janey here, because she can't write, and she is what I've found is called low-verbal---she talks, but not much and not always with meaning.  I take being Janey's voice very seriously.  I would love her to be able to say what she thinks, to be able to share insights into her own life with her own voice with all of us.  But I can't make that happen just by wanting it.
The other day, using the idea of assuming competence, which is an idea I like very much but don't always find to be useful, I told Janey about this blog.  It's certainly been no secret, but I realized I hadn't sat down and explained it to her.  To be totally truthful, I don't think she understood what I was saying at all, but I don't know that for sure.  I told her I write on the computer about her, to tell people about what a cool kid she is and to help people understand autism.  When I say the word "autism" to Janey, I have realized I make it sound like I'm saying "Christmas morning" or "huge treat".  I want it to be a word she associates with all good things.  I then asked her if there was anything she wanted to tell people who read about her.  She didn't answer, as is usually the case.  I then did a starter phrase "I want to tell you that..." and she said "I love you!"  It's a very nice answer, but it's also echolalia.  I say all the time to her "I want to tell you that I love you!"  

After a lot more trying to get Janey to say something else, she did---she said "Are we done yet?"  That was actually a phrase that I haven't heard her use a lot, and I listened and stopped talking.

So---I have to guess.  What would Janey want to say?  I don't know.  Janey isn't self-reflective.  She hasn't ever said anything that indicates she understands past or future, or that she gets what autism is, or that she realizes she is not quite the same as a lot of other kids her age.  So I don't think that she'd make profound statements about why she does things she does.  

My best guess is based on what Janey asks for, what she seems to be driven by in life.  I think she'd want to talk about music.  She'd tell you what songs she likes, and what singers.  She'd want to talk about food, especially favorites like Chinese food or tuna or kale.  She'd tell you how she likes to cuddle on her bed, with her favorite special pillow.  She'd want you to know how much she loves car rides with Daddy.  She'd probably want to discuss her favorite TV shows, especially Angelina Ballerina.  I don't think she'd say much about school.  School and home are separate worlds for her, and she's never said one word to me about school.  She might say she's sad or angry, if she is.  She might tell you about Rebecca, my friend Maryellen's cat that for whatever reason seems to be often on her mind.  

I might be selling Janey short.  I've been amazed by videos I've seen of kids that learned to type and had many intense things to say.  But Janey doesn't seem to have a huge urge to communicate, and any attempts to get her to communicate in alternative ways are very quickly shut down by her.  She likes to use her voice, and the words she is comfortable with.  She understands probably 100 times more words than she says, and when she is using delayed echolalia, she shows she can physically talk easily with long words.  But she chooses not to, and I have to respect that.  It's like if someone said they needed to work hard with me to teach me to run marathons, when I've never shown the slightest interest in or inclination toward running.  I'd resist them at every turn.  I might be able to learn to run a bit better, but I'd hate learning and I wouldn't use what I learned.  Maybe it's not that extreme with Janey, but she does seem extremely resistant to my tries to widen her communication.

I'm putting some pictures of Janey on here, because in many ways, that is how she communicates best---by facial expression, by what she does.  I wish you all could meet her in person.  Until then, I'll keep letting you know her by writing about my very cool kid.


David Fee said...

My daughter always seems to be in a state of play. Her attention lasts about 10-15 minutes then she wants to do her own thing. I wish I could stress learning is important especially for her but she doesn't like to learn. She's never finished an evaluation test because she gets distracted so we don't know how much she really knows. I get the part about school. I pepper her with questions if she wants something like a sucker or the Ipad but I don't get much. She can't name any kids in her class which is weird because 3 of the 9 kids have the same name spelled differently- Jaydon. She does know the name of the teacher and she can repeat the echolalia statements like "Sit down" but who knows what goes on in class.

pianorox said...

She is beautiful.