Debbie Shapiro interviews Nechama.
The first time I saw augmentative communications in action was several years ago, when I was asked to interview Rachamim Melamed, the former National Supervisor of Educational Programming for Israel's Department of Education. Close to fifteen years ago he was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig's Disease), and told that he had only three to five years to live. Today, paralyzed from the neck down and breathing with the help of a respirator, he communicates with the world by using eye movement to type on a computer.
It was fascinating to observe him at work. Slowly -- oh, so slowly – Rachamim's eyes focused directly on the letter he wished to type. With a blink, the letter appeared on the screen. In the time it took me to write this paragraph, he laboriously spelled out the words, "Shalom. Nice to meet you." I later learned that using this painstakingly arduous method, he had succeeded in authoring seven books, an accomplishment for anyone!
Although at the time I had no idea that Rachamim was using "augmentative communication" to hold a conversation, when asked to interview Nechamaof Kiryat Sefer, a special education teacher specializing in augmentative communication, I realized that I already had some background -- albeit very limited – and was eager to learn more.
Debbie: Augmentative communication is a very specialized field. How did you get into it?
After graduating an American seminary program in Israel, I stayed on as a madrichawhile attending an Israeli seminary, where I graduated with a official Israeli teaching degree. With my first teaching job, I discovered that I loved working with children on an individual basis. That natural outcome of that was to enter a program specializing in special education.
My first job in special education was in a school for severely disabled kids. Since these children were severely limited in their ability to express themselves, communication was a major issue.
As part of my on-the-job training, I attended a series of lectures on augmentative communication. The gist of the series was that with creativity and through using the proper methods, it's possible to help even the most low-functioning individual express his needs and desires. I was working with children so severely disabled that this meant using very simple tools to provide them with a basic vocabulary. So we used something called the Big Mac.
Debbie: What's a Big Mac? (Doesn't sound kosher to me. J)
Nechama: Basically, a Big Mac is a tape recorder with an over sized accessible switch that plays a prerecorded message. The messages can be either functional, for example "I want a drink," or experiential: "Yay! I'm so happy."
For a child who is just starting to learn about communication or for a severely mentally disabled child, we'll use a Big Mac, which, by definition, has only one message. On the other hand, a child of normal intelligence who is limited solely by his physical disabilities and has some experience in communication can have a communication device that plays back hundreds of different messages, which can be combined in thousands of different ways. Each communication device is adapted to the child's particular physical disability. So, for example, where as one child might press different buttons on a large board, another might blink his eye or twitch a muscle to activate the machine. The kids in my group were so severely disabled children that we used a Big Mac that said, "Yay! I'm sooo happy!"
Debbie: But how could you know if the children really understood the message? Perhaps they just enjoyed activating the machine and listening to the resulting noise, without understand its meaning.
Nechama: You're right. Most of the children enjoyed the interaction; although I'm not sure to what extent they really understood the message. But there was one little girl in my group who had no means to communicate with others; she had never, ever, made eye contact nor had she ever done anything functional. The first time we passed around the Big Mac, she was in a terrible mood, and refused to activate the happy recording. But afterwards, when I entered a different message: "I'm not happy today. I'm upset," she actually activated the recording with a vengeance. For the first time ever she was able to express her inner self!
This child, Chanala eventually became our foster child. Today, using modern technology- a computer with a scanner and communication books containing approximately 2000 words -- she is attending regular classes in the nearby Bais Yaakov. She's a good student and very much a part of her class. The other girls appreciate her and accept her as their friend. It's really pretty amazing!
Debbie: That is unbelievable!! Could you tell me a bit about Chanala's journey?
Nechama: At first we provided her with a Big Mac that she took with her wherever she went, and then we gave her lots of opportunities to communicate! A "normal" child learns the art of communication through communicating. When an infant breaks into a large, drooly smile, everyone smiles back at him. Although it will take time for that smile to become intentional, until it does he enjoys the positive interaction while learning that his actions impact on the world around him. Later on, when he unwittingly babbles, "mamamama" he might be rewarded with a hug and kiss! This positive feedback encourages him to purposely interact with others.
Today, when I see how much my beautiful foster daughter has accomplished, I shudder at the thought of what could have been. There was so much locked within her, waiting for the opportunity to be expressed. Augmentative communications was the key that unlocked her door to a meaningful life. I often ask myself how many other children are waiting for someone to give them that opportunity. Yes, I am sure that their physical needs are being taken care of, but what about their emotional needs?
Thanks to our wonderful Chanala, I've had the opportunity to speak with many, many professionals and attend numerous lectures on augmentative communications. As a result, I've become quite knowledgeable about the different methods and tools for helping people with disabilities communicate with the world around them.
In my work with severely disabled children, that knowledge is used to helps me discover and implement creative methods to enable these children to communicate. For one child, whose cognitive ability to express himself cannot extend beyond his basic physical needs, it may mean finding a way for him to let his caregivers know that he wants a drink. For another child, who, although physically limited is able to think abstractly, this might mean finding a way for him to express his concern about the impact of the present drought on the Kinneret's water level.
At one time or another, we've all experienced the frustration of not being able to express ourselves properly. Children with communication difficulties constantly experience this frustration. Through providing them tools to communicate, we are improving their quality of life tremendously.
Debbie: I understand the underlying theory, but how do you go about implementing it?
Nechama: The first step is to evaluate the child's needs and abilities. Of course we also need to know what he cannot do -- his physical and mental limitations -- but what's more important is that we need to be aware of what he can do. For one child, that's the ability to blink, for another, to twitch his big toe. On the other hand, children in the autistic spectrum may have no physical limitations, yet their lack of motivation stops them from speaking. For those children, we look for something that does motivate them, such as a specific food, or a toy, or a hug.
I try to be attentive to my students' needs, to listen to their cues. The child itself has to grow in his need and ability to express himself, and that growth must come from within. Rabbi Wolbe often spoke about that; some things are taught. But with other things, such as the ability to communicate, we can only plant the seeds and provide the right environment. But we cannot force the growth.
When Chanala was little, we brought her to a clinic specializing in augmentative communication for a professional assessment. They showed us that Chanala was capable of using two Big Macs to communicate [in other words, two devices, each with a different recorded message]. When I asked about the future, they responded, "Chanala will guide you. Take your cues from her." I was frustrated. I wanted to know what would be next; I wanted a clear plan for the future. But learning to communicate is a skill that develops; there's no fixed curriculum that can be studied and learned. Just like Chanala, each of my students is a unique individual, and each one takes a different path in learning to communicate.
Debbie: Can you tell us about the different methods used to implement augmentative communication?
Nechamah: Augmentative communication methods are divided into three categories: low-tech, mid-tech and high-tech.
Low tech methods are non-technological communication tools. One example of low-tech augmentative communication is a child pointing to a picture or to letters on a chart to spell out a word. Of course the charts are modified according to each child's unique needs. So, for example, a child who is incapable of pointing at picture might use a gaze board, which is a large chart with a hole in the middle that enables the person helping him to see exactly where the child focuses his eyes.
Our Chanala was physically incapable of pointing. So she learned to communicate through a scanning process. We would ask her, for example, "Verb, noun or adjective," and she'd move her head when we said the category that she wanted. Then we'd open up the verb section of her word book and start counting the rows. She'd move her head when we said the row she was looking for. Afterwards, we'd do the same thing with the lines. So if, for example she clapped at row seven, and later on, at line 19, we'd know that she was referring to a tomato.
Some children work with lists of categories and subcategories. Since the vocabulary is well organized and defined, and the children are very aware of this organization, finding the correct word does not become a guessing game. Instead, it's a systematic method of providing a vocabulary for what the child wants to express, individually designed to fit the child's capabilities. One child's scanner or word book might consist of just three or four words, while another's might contain thousands.
Mid-tech devices are technological aids that contain anywhere from one to several hundred messages. They are accessed with a switch – and when we're talking about severely disabled children that can mean a switch that is activated by the blink of an eye or a muscle twitch.
A simple device may contain four squares that the child activates to broadcast a specific prerecorded message. More sophisticated devices can contain up to a hundred squares, with each square containing four different levels; in other a total of 400 messages that can be mixed to create full sentences. So, for example, a child might press the following sequence of six messages to transmit a complete thought: "I want" "to eat" "bananas" "and" "cereal" "for breakfast." If the switch is well placed, these messages can be accessed with as little a muscle twitch!
High tech devices are computers or other devices capable of providing an infinite amount of vocabulary. If a child is incapable of reading, then the child can communicate via pictures. With today's text to vocal technology, a computerized voice pronounces the words and it is so natural that it sounds as if the child himself is speaking! Once a child learns how to use a high-tech device the only thing stopping him from full communication is his own cognitive limitations.
Since Chanala does not yet know how to spell, she communicates by scanning whole words. She has a switch attached to either side of her head, one to start the computer scanning, the other to stop the scanning when the computer reaches the correct word. As a result, she is now able to say what she wants, when she wants. Recently, when we were meeting with her social worker about changing her official label from mentally disabled to physically disabled, the social worker asked me if I thought she would ever be capable of managing her own bank account and hiring someone to take care of her. I answered that it depends on how she manages with her computer skill. But then, with her computerized voice, Chanala piped in, "Betach! "Of course!"
Although Nechama's works specifically with children, augmentative communication is used to enable stroke victims and people with degenerative diseases such as Multiple Sclerosis or Amyotrophic lateral sclerosis (ALS - Lou Gehrig's Disease) to communicate with those around them. "Unfortunately," Nechama explains, "all too often no one realizes that it's possible for adults who've lost their ability to speak to learn to communicate again. As difficult as it is for a child who born without the ability to communicate, I am sure that it is even harder for the person who has experienced the power of communication, and then lost it. Unfortunately, in many cases medical professionals do not inform the family that there are options. If a person is able to control even the slightest movement of his body, he has the capacity to communicate with the people around him."
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