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.

4 comments:

  1. Despair ... true or false ... is one of the most eroding emotions there is.

    I choose to believe that despair as false as long as there is hope. But hope and despair can co-exist.

    It's good to read about B and N and all the others, and to see your method of listening to them.

    What you did with B in particular reminds me of A Child of Eternity. Do you know/remember that book? Adriana was asked about 'what planet we live on'.

    (By the way, the deaf community have an interesting answer to this question. They live on EYEth: the planet of the eyes and sight).

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  2. I certainly DO remember A Child of Eternity - one of my all-time favorites. Do you know what Adriana is doing now?

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  3. I enjoyed hearing about B and N. I believe those you interact with immediately sense something different about you; your calm presence, belief in competence, loving nature and your willingness to serve is recognized at a deep level.

    MAry Ann

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  4. Thanks, but I have to say the kids always give more to me than I give to them. The lessons they have taught me will stay with me forever. I have truly been blessed.

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