Almost every brain-injured child has some kind of language problem. Indeed the vast majority of brain-injured children have such large problems that it is virtually impossible for them to communicate articulate thoughts or ideas. The solution to these problems that originate in the brain is, of course, to fix the brain. However, language problems are very often the result of profound respiratory problems, and these problems are not fully resolved easily or quickly.
Parents leave no stone unturned in their efforts to understand what their children need and want. Relying only on facial gestures and a few unintelligible sounds, Mothers can determine "He has a headache" or "He would like a glass of water." This is a result of the tremendously strong bond between a mother and child, which is vastly underestimated. Mother does a fantastic job of figuring out her child's needs in the absence of articulate speech.
As precious and wonderful as this ability is, there is not a single mother who would not happily trade it for the opportunity to hear her child fully express himself in his own words.
Along the way to achieving language, parents, children, and staff develop the best means of communication possible given the profound problems of the child. Through the good offices of Dr. Douglas Biklen and his staff at Syracuse University, a new means of improving communication was brought to the United States–facilitated communication.
Facilitated communication provides that opportunity for many, many severely and profoundly brain-injured children and their mothers and fathers.
Facilitated communication is a method in which the parent provides the physical and emotional support that enables the child to express himself. While the result of facilitated communication is profound, the technique itself is simple.
The parent merely supports the child's hand so the child can point to letters on a board, typewriter, or computer in order to spell out words, sentences, and paragraphs. The parent stabilizes the child's movement so the child can effectively point, and through the experience of trial and error the parent learns the exact support the child needs to "write" his message.
This method allows the child to communicate while he is simultaneously expanding and improving his ability to talk. This is a very important point since hurt children want to speak. They take a very dim view of using substitutes or special techniques that might bypass spoken language. In this they are entirely correct. Every child has the right to speak. Introducing this technique in no way diminishes that right or decreases the burden on us to find the best and fastest means of improving a child's speech. However, once a child understands that this is another option that he may use–just as we all can use writing to express ourselves if we choose to do so–then the child is generally very willing to learn how to facilitate.
It is a very useful technique but it is not a cure. It will not change a child's respiration or improve his mobility and coordination. However, once a child can express himself in a more articulate way, it is often very clear that we have greatly underestimated his intellectual ability. This process of facilitation and communication opens our eyes. When every member of the family looks at the child with new eyes and much greater respect, this changes how that family deals with him.
Once a child is communicating through facilitation he often experiences a major change in bearing and comportment. Behavior usually improves dramatically. Effective communication markedly decreases frustration and the tendency to use force or temper tantrums to try to solve problems. Life becomes easier and more fun. When problems do arise they can be discussed and handled using facilitation.
This means that a profound change takes place in the environment of the child. Once the environment changes, the child now performs differently in response to that new, more challenging, and more dynamic environment. The child's increased willingness to take on new challenges brings about basic and important neurological changes.
Parents are clearly thrilled to know their children more intimately, which increases their respect and love for them. Children are thrilled to be understood, perhaps for the very first time, and to be able to express their love and respect for their parents.
The process of facilitation is very simple. It starts with the parent asking a question that has a simple or obvious answer. "What color do you prefer–blue or red?" In a very short time the parents can ask a simple question, like "What kind of pasta would you like me to make for dinner?" The answer clearly falls within the category of kinds of pasta.
Once mother is confident with the amount of support she needs to give, she can ask open-ended questions, like "What would you like to tell me?", or "What did you think of that book you just read?" Here's where the excitement begins. All of a sudden a parent has a window or access to who her child is and exactly what he is thinking.
The Institutes have been using this technique since 1992. It is clear that the children do not want to waste their facilitation time on mundane comments. It is common for children to turn off to the method when mother asks "What did you do today?", when she was with him every second, or "Do you like apples?", when she already knows the answer. The technique should be used only as a means of expression for creative thought or communication. The families who have succeeded best have understood this point from the start.
Since we first started using the technique, our children have provided us with a wealth of knowledge and many important insights into their problems, and even the solutions to those problems.
It is the intention of The Institutes staff that every child will speak. And while facilitation is not a substitute for language, increased language has often been the result of mobilizing the language pathway through written communication.
Some children have started to speak in sentences and express their needs. Some children use facilitation to clarify words they have spoken but may not have been fully understood. This is helping to improve their willingness to speak and greatly helping parents to understand speech that they formerly did not understand.
Some children are writing research papers, books, essays, and poems. Some of these same children are now able to write or type completely independently.
Parents and staff are amazed and thrilled at the communications from the children. We now have children facilitating in Japanese, Italian, French, Spanish, German, Hungarian, Polish, and English.
We cannot read their words without heightening our own sense of urgency to find all the answers for these and all children. The definition of genius will be changed as the writings and thoughts of brain-injured children become well known.
Through facilitated communication mothers are giving wings to their children who were locked in cells the size of their own small bodies.
The door is now open. We are just beginning to see what is behind the door and beyond.
The anticipation of what is to come inspires all of us who have been privileged to work with these children and their families to strive even harder to give them the best program the world has to offer.
Give Me My Voice, a book of poems expressed through facilitated communication, was published recently by The Institutes Press. It includes the eloquent thoughts of thirty brain-injured children from around the world.
Give Me My Voice can be ordered through The Institutes on-line bookstore or mail order department.
