Monday, July 28, 2014

Autism Acceptance...Thinking It Through

I'm not much of a trend follower when it comes to autism.  I don't generally sign onto any particular philosophy or treatment plan or diet or "cure".  If I were forced to pick an approach to pledge allegiance to, however, it would most likely be autism acceptance.  The meaning of that, as I see is, is accepting a person with autism as they are, valuing them for how they act and function rather than what they might be able to become if changed.  This philosophy fits with how I raised Janey's siblings, for better or worse.  With both boys, there came a point when I realized there wasn't really a thing I could do to change their basic make-up, and that in fact I would not want to.  Realizing that logically led to doing some things differently.  For example, my second son and I used to battle daily over homework.  He would have a lot of it, but would put it off, refuse to work on it, get angry when I mentioned it---the fights were truly putting a wedge between us.  I realized I didn't want that to be our relationship.  So I let it go.  I stopped having anything to do with his homework.  I left that part of his life up to him.  And he took responsibility, but even if the result had been him not ever doing a lick of homework again, that was something I had to accept.  I wasn't willing to have his teen years consist of one big endless fight.  The same general scenario played out many times in parenting both boys, and I learned that you can't change your kids.  That doesn't mean you let them act any old way.  I am pretty old school in insisting on politeness and respect, but that is insisting on a behavior, which to me seems different than insisting on a personality trait.

So how does this tie into Janey and autism?  What can I do to show her that I accept and value her as she is?  How does this work with a child who is not usefully verbal, who cries for long spells, who can't spell out to me what she is feeling?

An incident this weekend let me to a lot of thinking about acceptance.  I was trying to work on typing with Janey.  I've heard about other girls (and boys) who seem similar to her learning how to type, and being able to tell in amazing clarity what they are thinking.   Janey has hated any attempt of mine to get her to try iPad communication programs, and I thought I'd take a new route.  We sat together and I encouraged typing on the keyboard.  Janey responded quickly---by going up to the top right of the screen and clicking on the little "x" to close the program.  She's got some good computer skills.  I opened it again and she closed it again.  We went back and forth about 6 times, and finally she started to scream.  This is very similar to the many times I tried various communication programs on the iPad with her.  It's not that she doesn't like the iPad or the computer.  She loves them both, and uses them with complete ease.  But she hates to be directed.  Left to her own devises, she'll try everything on the iPad, and explore YouTube for hours.  But if I step in and try to have her work on what I want her to, she shuts down---literally shuts down the program and figuratively shuts down mentally.

So I gave up on the typing.  I decided to tell her so, directly.  I said "You don't seem to want to type with me.  We won't do that for now.  If you want to try it again another time, we can, but it's up to you"  The look she gave me---I wish it was recorded.  It was a wonderful look---a look of relief and amazement.  And she started to sing.  She sang three verses of "Hark the Herald Angels Sing", in her angelic voice.

I realized, on reflecting, that Janey does communicate pretty well.  She doesn't communicate the way I am trying to get her to, but she was pretty plain in what she was saying.  She closed the program, over and over and over.  She cried when I kept trying to force her.  And when I told her we would stop, she sang one of her favorite songs, a song that talks about glory and peace.

What if I choose to accept Janey--fully?  What if I don't make that acceptance dependent in any way on her changing?  What if I accept the crying spells?  What if I accept her quirky interests?  What if I believe her when she tells me what she wants and doesn't want to do, even if it's not in a direct way?  What if I assume she does understand what she wants and what I want?  I will still insist on politeness and respect, as far as she is able to provide those.  She's not going to bite us, or fling things on the floor, or get her way if she wakes in the night wanting the TV on full blast.  Accepting kids doesn't mean letting them do whatever they want.  It has everything to do with respecting her while insisting she respect others.  It has to do with listening to what she has to say, no matter how she chooses to say it.  It has to do with letting her be who she is, because she is amazing, right now, right the way she is.

1 comment:

Sabrina Steyling said...

You are right - Janey can communicate, but in her own unique way. She understands to a point, as you have observed and shared, i.e. closing the program because she didn't want to be bothered with it, and singing when you told her it was okay not to want to do that particular thing just then. So yes, although she might not communicate in any "traditional" way, she's still getting her point across much of the time, and that is definitely a plus.