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Monday, September 17, 2012

Why doesn't Janey talk more?

For some reason, this question was hitting me like a ton of bricks this weekend.  Janey CAN talk.  She can say a lot of things.  She understands speech quite well, at least basic speech.  But her talking is very, very limited.  She uses phrases she's used before almost always.  A unique sentence from her, once analyzed,  almost always turns out to actually be delayed echolalia---something she's heard from a video, song, school, etc.  She learns new words very slowly.  An example is "towel", that I wrote about before---for years, she said "scarf" for "towel".  Now she says towel pretty consistently, but why did that take years, when she can memorize huge chunks of dialogue in seemingly a day?  And why are the sentences she say often so ungrammatical?  For example, they almost always start with "I want" and then use phrases that don't agree or fit, like "I want snuggle on Mama's bed", one of her most said sentences, or "I want go to visit Pino" (her uncle).  Why does she cry sometimes for hours because she can't find a way to tell us the simple thing she wants or what is bothering her?  Why does her speech not progress, despite great speech therapy and being around talkers and going to school?  Why is it so hard for her to answer questions?  Why does she often call people the wrong names, although I'm quite sure she knows their names?  For example, this morning when saying goodbye to me at school, she said "Goodbye, Ms. Janet!" (the name of her speech therapist), and in fact, all weekend almost everyone was called Mr. Janet, even Tony.  It is vanishingly rare she uses William or Freddy's name.  Why does she request things using a question?  The example of that is when she likes a song she hears in the car from my iPod.  She says (frantically) "DO YOU LIKE THAT SONG?"   That means "don't let the song end, replay it fast, I really like it"

There must be something just mixed up in the speech center of her brain, something that makes straightforward speech very tough.  I wish I understood it.  A strange example of the crossed wires or whatever they are was this morning.  She liked a song in the car, and said her usual "do you like that song?" but I was confused as to whether she meant a song that just had ended or one that just started.  She started screaming "Christmas!  Christmas!  Do you like that song?"  I hadn't played any Christmas songs, but I took a guess and played "Living on Love", an Alan Jackson song that has the word "wings" in it.  I think that was it---she's heard "wings" mostly in Christmas songs about angels.  Somehow, instead of the many straightforward ways she could have expressed herself, that was how she did it.

When Janey gets upset, we are trying more and more to encourage her to tell us what is wrong, but sometimes that almost seems mean, because it's so hard for her.  It just doesn't seem to come naturally to her to translate feelings into words.  We give her choices, starting the sentence for her "I am crying because I am...." and she will sometimes plug in "angry" or "sad", but I think those are usually guesses.

Lately she loves Happy Meals, but despite us using that word for them a lot, she asks for them by saying "I want chicken nuggets.  I want French Fries.  I want chocolate milk", breaking down what is in them.  Then we try to get her to say if she wants Burger King or McDonalds, but she will almost always pick whichever we say second in the question.  If she does mention them on her own, it's always "Old McDonalds", from the song.  When she makes an association like that, it's very hard for her to break it.  For example, she usually calls her ABA specialist "Mr. McKen" although his name is Mr. Ken, but both her classroom teachers last year had names that started with "Mc" and I think she came to see that as some kind of teacher preface.    It seems like once she learns a rule, she overgeneralizes it.

Sometimes I feel like if I could break the code that Janey's mind uses for speech, I could teach her things much more easily.  I wish I understood what the speech center of her brain is like.  I daydream often that the Vulcan Mind Meld is real, and I can join minds with her and figure out what goes on inside her brain.  I think it's an interesting and confusing place.

1 comment:

Sabrina Steyling said...

I can only imagine how frustrating it is to try and unlock that mystery. You mention the Vulcan Mind Meld, but I thought of how, in Twilight, Edward and Bella's daughter can show you what she's thinking by touching you. Too bad Janey can't just touch your arm and everything she's thinking goes straight into your mind...