Wednesday, August 12, 2009

Excitement in/on the air

It has happened again. ABC has featured the story of Carly Fleischmann for the second time now, and she has also appeared on Larry King Live. Carly is a young girl from Toronto who types to communicate. The very positive reaction from viewers certainly warms my heart. But of course I also have to restrain myself from shouting out something like, "Where have you people been for the last 20 years?" or a version of "See, I told you so!"

Carly's communication hasn't come easily. According to the script, she is completely nonverbal and has an extremely hard time controlling her body - clearly shown in footage of her early years, as well as more recent scenes from her everyday life.

It would also appear that the methods used with Carly were different than what I tend to do. Once it was recognized that Carly could type, she was "made" to type words in order to get what she wanted. There is also a reference to her finger hovering over the keyboard sometimes for "hours" before actually typing a letter. My approach is much more gentle and supportive. If a child isn't ready/able to type on their own, I provide both physical and emotional support immediately - and lots of it. I must accept the reality that this might help explain why the young people I type with so seldom move on to typing completely independently, as Carly is shown to be doing.

But the road to independence is a complicated thing, and not everyone is in agreement as to its importance. Obviously, it helps immensely toward acceptance of the validity of the typed message if no one is actually touching the person while they type. I choose to defer to the wishes of the individual doing the typing - if they are truly interested in typing on their own, then let's go for it. If they express to me that they still need my support to get out their thoughts and feelings, well, then that's what we do. For the most part, I believe a person will become independent much more quickly if they are in a situation where the people around them - the family, school, and community - are totally supportive and eager to hear what they have to say. It doesn't work nearly as well (or at all, maybe) when one is surrounded by critics and skeptics. Who can blame them?!?

Meanwhile, I wait once again, hoping that this new excitement over a girl in Canada, who is suddenly able to express herself on the keyboard and tell the world what it's like to have autism and be unable to speak, will spill over the border just enough to raise awareness and interest. The kids I work with have a lot to say too, and would love to have a new audience. They are no doubt tired of preaching to the choir - that would be their parents and I, who have listened over and over again to their pleas for understanding.

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