One Man Show

I wish I could remember who is was, but someone at Janey's IEP meeting said that when Janey is not in a responding mood, working with her is like a one man show.  That was such a great line to describe how it can feel when you don't get any responses at all from her!  When Janey gets in that kind of mood, the completely non-responding mood, you can start to feel like a clown or magician or speech-giver working in front of a totally quiet audience.  You have no way of knowing if she's taking in any of what you say.  You can pull out all the stops, do everything she usually likes, and she just looks at you blankly.  That is one of the most frustrating of the states Janey gets into.

It was making me think about the many, many different modes Janey has.  That was a huge theme at her meeting---how inconsistent she is.  A lot of education for special needs is based on not moving on until the child shows competence at a certain level.  With Janey, one day she can blow you away with how well she knows a subject, while the next you'd think she didn't know a thing about it.  It is as extreme as what surprised me most at the meeting---that when Janey is in exactly the right mood, she can write her name "Jane", and in fairly good printing!  I was shocked by that.  On other days, she can't even seem to hold a pencil.

Janey's modes seem to come in groups.  For example, there's the talkative excitable mode.  That is when she seems almost manic---talking a lot but also very, very wild, sleepless, running around, reciting phrases.  Then there's the talkative relaxed mode, which is probably my favorite---when Janey is happy but not wild and talking a lot more than usual.  With the sad moods, there's loud sad, where she screams all day, and soft sad, where she is just not responsive, where she wants to be alone and sleep.  There's cheerful and cooperative, and there's cheerful and "Dennis-the-Menace"  Cheerful and cooperative might not involve much talking, but she will do as you suggest, and will do things like putting on her shoes when we say we say we are going someplace.  Cheerful and Menace is when she pours out bottles of soda or dishwashing liquid, where she runs away from us dangerously but laughing.  There's more moods than that, but you get the picture.

I want to think Janey can always absorb what is going on around, even when she appears to not be.  I've read about a few kids with autism that suddenly in their teens were able to communicate much better than in the past, and they said one of the main things they wanted people to know was that they were understanding what was being said even if they couldn't respond.  So even when Janey is in one-man-show mode, I am trying more lately to explain things to her, to tell her what noises are that she might be hearing, to read books to her, to take care not to say things around her that might upset her.  It can't hurt.

I worry a little about Janey getting bored, if she really can understand much more than she can demonstrate.  What if she can already read, at times, and we are over and over teaching her her letters?  What if she gets everything that is being said to her, and is sick of hearing my voice telling her the same lessons over and over?  But I think it's more likely that when she's in some of her modes, she truly doesn't know the same things she does when she's in a different mode.  Or more---she can't access the knowledge.  That part of her brain library is temporarily locked up.

I think if science could figure out this---why kids with autism can't always access what they know---it would be a huge stride forward in helping them learn.  I hope it's being studied, somewhere.