Thursday, January 15, 2009

Talking to the Others

My daughter is turning three years old this month and is starting preschool. It is a class especially for kids with autism, with expert instructors trained in helping them with their particular challenges. We're hoping this will help with a number of issues that are troubling her.

One of the big ones is that she feels an obsessive desire to close doors, not in the sense that she feels that any open door must be closed, but that if a door is going to be closed, that she must be the one to do it. Usually, if someone else closes a door instead of inviting her to close it, she'll have a meltdown. She's also very picky about her food. We'd really like for her to have more variety in her diet, but the introduction of most new foods results in a lot of screaming. The preschool will hopefully help her with these issues, as well as with things like social interaction and potty training.

The biggest issue, however, is talking. She is slowly showing more and more desire to say words, but it's still more of a game with her and she doesn't use them much to actually communicate. We've had the opportunity to use some software that offers several activities that help promote skills related to speech, but her reaction to them is mixed; she's enthusiastic about some and averse to others. The inability to communicate verbally is the biggest obstacle to her learning and progress, so if nothing else, any improvement the preschool can help us achieve in this area would be a big win.

Some good news is that she is much more proactive than before about asking as best she can for what she wants. She can easily and effectively communicate that she is hungry, needs a diaper change, wants you to play with her or is ready for bed. She also no longer resists taking medicine or going to sleep. It's amazing how seemingly small advances like these can make such a big difference. She is generally a lot happier now than she was a year ago, when she was so frustrated because she didn't understand why nobody knew what she wanted.

I try to imagine what the world has been like for her. I picture her in a cell with transparent walls. All around her, she can see people looking in at her, and can hear their voices through the walls. She tries to call to them and ask them to try to get her out, or at least stay and talk with her for a while, but she don't realize that the walls somehow let sound in but don't let it out. All she gets are uncomprehending stares and looks of pity.

She soon realizes that for some reason, the Others, as she's come to call them, can't hear her. As the days go by, she eventually gives up trying to talk to them. Sometimes, the frustration gets the better of her, and she screams and cries and kicks the walls and throws herself around the room. Other days, she just sits despondently and listens to the Others talking.

One day, she wakes up and sees something new inside her cell. Somebody has installed a device with a button on the wall. She pushes the button. A light comes on briefly, but nothing else happens. She pushes it again and again, with the same result. This doesn't help at all! She screams and hits the device over and over, and quite accidentally, she hits the button again. Suddenly, the Others react with surprise. Something happened! A little experimentation results in a discovery: when she's holding the button down, the Others can hear her! She doesn't know it (because nobody's been able to teach her), but this device is a called an intercom.

The button is faulty, so the signal is laced with static and frequently cuts out. Communication with the Others is slow at first, and nearly as frustrating as not being able to talk to them at all. It takes a lot of patience and learning on both sides: she has to learn how to apply just the right amount of pressure to the button to get the light to stay on and keep the signal from cutting out, and the Others have to learn to decipher her words amidst the static. But slowly, comprehension replaces confusion.

There's still a long way to go. It'll be some time before they get good enough at communicating that they can plan together how to get her out of the cell. There are still some days of screaming and crying, but not as much. She's no longer alone.


Cutey said...

I'm so glad you are posting these thoughts and writing about your experience with Autism. If gives me a better sense of what it must be like for Parents to deal with an Autistic child and how to be more understanding. How is Primary going?

Robert said...

Well, she's still in nursery, and given that she's a January baby, she'll not be moving on to the actual classes until she's almost 4. That's fine, since at this point she is unable to sit and pay attention for very long, even more so than a typical kid that age. She would probably be too disruptive to a Sunday School class right now. Hopefully, the experts at the preschool can help us with that.