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.

Sunday, August 9, 2009

Here's How it Happens

Since my retirement from the classroom in 2003, I have found several different ways to stay involved in the field of autism. I have written already about the opportunities to give presentations, which I try never to pass up.

My favorite involvement continues to be working one-on-one with an individual who is struggling to communicate. Most often, I am contacted by a parent who has tried just about everything else, has heard the controversy over FC, and is willing to give the method a try - hoping against all hope that their child might be one of those who has something to say. Or more likely, afraid to have their hopes dashed one more time. They've been disappointed so often, but can't quite give up - these are some of the most tenacious people I have ever known. (My critics say I am preying on gullible parents and giving them false hope. I say they've been living in false despair, based on our misperceptions of the abilities these kids really have!)

Last week, I traveled across the state to meet "B" at the request of someone who has known him for several years, had heard one of my presentations, and dared to believe enough in "B" to give FC a chance. Within minutes of my arrival, "B" was sitting at the computer with me, we were having a typed conversation - full sentences, complete with correct spelling and punctuation - and we had a teacher close by crying tears of joy.

"B" is near the end of his time in the public school system and has been considered to be "severely cognitively disabled." What usually goes along with such a label is a program that focuses on functional life skills, helping the student become a more functional part of society - self-help skills, social skills, job skills, etc. Little or no academics are included for most of these kids. It's the way I taught for most of my career; we all thought we were giving the kids what they needed most.

Essentially nonverbal, able only to repeat words or phrases ("echolalia"), but unable to use words in a meaningful way, "B" is a friendly sort of guy, but has had some rough times along the way. In fact, he was attending school only for a short part of each day during the last semester because he had become quite aggressive toward a classmate, and it was feared that someone would get seriously hurt. School staff had tried various behavioral and sensory approaches, but they knew they hadn't gotten to the root of the problem.

"B" smiled eagerly as he became more fluent in his typing, realizing the power he had while I supported his hand and he typed his thoughts. I wasn't surprised at his message: He wants us to tell everyone at home and at school that he is smart, he wants to thank us for believing in him. He wants to type every day and he wants much harder work while he is in school. And he is unable to control himself when his overly sensitive nervous system becomes overwhelmed (as in a noisy classroom with one particular student making loud noises).

I had started out in my typical fashion, asking "B" to type his name - we tried it with no physical support, but he wasn't able to do that - followed by basic questions about the day of the week, colors of clothing, etc. But I quickly sensed that "B" was able to move beyond that, and was, in fact, eager to do so.

If it hadn't been for my experience with a different young man, "N," I might not have moved on so quickly. I first met "N" about two years ago, in his home, and he too was nonverbal except for a few repetitive words or signs that he used to make his basic needs known. When I sat next to him the very first time and asked him to type his name, he did so immediately. Then as I thought about my next question, he "borrowed" my hand which was still holding his, looked across the table at his mother and typed, MOM NEVER STOP BELIEVING IN ME. "N" was 12 at the time, and he too had not been part of an academic-based school program. He too wanted to type every day, wanted everyone to know he's very intelligent, and was appreciative of the unfailing support he had felt from his loving family. He caught on immediately that typing to communicate gave him power he hadn't had in the past. He could use typing to let the people around him know what he was thinking and feeling.

In my typed conversation with "B," I typed a statement or question and then extended my hand to provide support so that he could read and respond. Just seeing that he could actually read and process what I was asking was enough to make his teacher cry. He's 18, and up to this point had not been able to demonstrate to anyone that he was able to read. But it was so much more than that. We typed for close to two hours and he didn't want me to leave.

I am filled with joy at my experiences, but also with frustration because I know there are so many more just like "B" or "N" who could benefit from FC. It's hard to deal with the anger that creeps in when I think about the naysayers who stand between these amazing young people and the voice they deserve. For the most part, the only ones who are respected for what they have to say are those who have become independent in their typing, and even then the critics find reason to doubt what is happening.

Why is it so hard to admit we've been wrong for a long time? Why can we not all rejoice in the realization that these young people may not be able to speak (or type without support) but that doesn't mean they don't have a lot to say, and it doesn't mean they can't think, learn, feel, and have opinions just like the rest of us.