Robert J. Doman Jr.
The level of function achieved by an individual is a reflection of the stimulation and opportunities afforded the individual by his environment.
Injury to the brain disrupts the brain’s ability to receive, process, store, and utilize information, leading to neurological dysorganization. Our ability to stimulate a dysorganized child is reflected in the child’s growth and development, or lack of such.
It is said that one learns from his failures. At one point in my career, I had the opportunity to learn from some of the most magnificent of human beings I am sure I will ever meet. These people, these children, were the living, breathing (though not always satisfactorily) failures of the entire profession dealing with hurt children.
In 1971 my position was that of Clinical Director of United Cerebral Palsy of Delaware County, Pennsylvania. This old Victorian building, located on a hill surrounded by four acres of rolling grounds, was the site of my education. U.C.P. also ran the George Crothers Memorial School a few miles away where I had spent the previous three years developing some of my educational and behavioral principles and techniques. As Clinical Director, I was responsible for the team of therapists and therapy programs carried out with each of the children in the school, as well as the academic programs.
My learning experience as Clinical Director began on my first day in my new position. This experience, as well as many others, arrived in the form of a problem. This particular problem involved a severely brain-injured child named Dawn. Dawn had just entered her teenage years and was a lovely, blonde, warm, loving, and happy child. Dawn also only weighed about thirty pounds. On a good day she could move some facial muscles, and turn her head slightly. Dawn’s immediate problem was that she had stopped breathing on several occasions. On that particular day, the staff was afraid to touch her for fear that it would happen again. They all felt that Dawn should be taken home until she was breathing better. Or until…
I already knew Dawn’s history because I had spent hours reviewing the children’s charts prior to my first day as Director. Reviewing histories of severely brain-injured children and their families is always a sobering experience, but Dawn’s had been one not to forget. Dawn had been born a brain-injured child. Her parents eventually found their way to the Institutes for the Achievement of Human Potential, where she had received a full program, and had made fantastic progress. At five, Dawn could walk, looked beautiful, seemed healthy, and was obviously on her way toward becoming “normal.” Evidently, all miracles are not meant to be, because after working so hard and doing so well, Dawn fell victim to encephalitis. Not once, but twice, leaving her severely brain injured. The program was tried again, but this time without much success. She then made the tour of surgeons and specialists, finally arriving at U.C.P. for what was termed a maintenance program. A maintenance program meant failure. Not the child’s failure, for Dawn never failed, but our failure—the world’s failure. When everything the world knows has been tried without success, there is nothing to do but try to maintain the child’s condition, and wait. And hope that you, or someone, will find something to help the child.
On the particular day while Dawn was having the difficulty, I was fortunate, because the Medical Director was in the building examining children. The founder and Medical Director of U.C.P. was also a co-founder and Medical Director of the Institutes for the Achievement of Human Potential, the founder and Director of the Center for Neurological Rehabilitation, the holder of many awards and certificates, and one of the few physiatrists (a physician with specialization and certification in physical medicine and rehabilitation) in the nation. He was also my father and my mentor.
That day when I presented the Medical Director with the problem, I received a reply which I have heard in various forms many times since. “Dawn is a severely brain-injured child. With what we know today, she is one of the few which we are failing, and when we fail a severely hurt child, they do die. They cannot breathe, they cannot digest or properly metabolize their food, their circulation is poor, and their sensory channels are often so involved that they cannot even perceive the world in which they live. They die, because they starve. Their brains are starved for information. They need stimulation.” When a child is doing poorly, she doesn’t need less, she needs more; and it was our job to see that Dawn received it.
I spent most the rest of that day on the floor with Dawn. At first she was white as a sheet, and her breathing was so irregular and shallow that it could have easily stopped completely if Dawn had let it. She didn’t. For perhaps the first half hour, I just sat and watched her struggle to breathe, her tiny body rigid and her blue eyes closed in a half sleep, half coma. After that, I started to whisper to her and gently stroked and squeezed her arms and legs, without receiving any signs of response. Then I rubbed and squeezed harder. I turned on sound-effect records of jets and trains; turned on all the lights; turned off all the lights; put the most horrible odors I could find under her nose, and the most obnoxious tastes into her mouth. I rolled her, and turned her and whispered softly into her ear. Gradually, her color got a little better and her breathing became deeper. I could see some flicker of recognition in her eyes. Toward the end of the day her mouth twitched and her eyes opened. This time bright and alert, she broke out with the most beautiful smile I have ever seen—and a long healthy moan.
Five or six times a day after that I would come down to see Dawn and we would talk, or at least I would talk, and Dawn would react with a combination of sounds and expressions that could communicate all her feelings.
I learned a lot from Dawn. She gave real meaning to many of the concepts that my father and uncle had developed and utilized to develop a treatment philosophy for brain-injured children. Dawn taught me that even the most severely involved child can be bright. In fact, very bright. Dawn taught me the fantastic need for stimulation to sustain life itself. But perhaps most of all, she taught me that within those incredible bodies lie real people. Loving, giving human beings that could give so much without even speaking a word. Real people that we must never give up on, and for whom we must always search for new answers.
That night after spending the day with Dawn, I stayed awake, designing a program and designing a new environment for Dawn, as well as other children in her group, and for our children in preschool programs.
Designing a program for severely brain-injured children in a clinical or school setting is extremely difficult. At maximum, there are six hours a day, and five or six days a week to work with a child, which is not enough time for a severely involved child. A severely brain-injured child should be worked with virtually every waking moment, seven days a week, every day of the year. In a clinical setting there is the problem of staff. Staff which must be paid. At U.C.P., I had three children for each staff member on a good day, when there were also volunteers, and five children per staff member on a bad day. The children we were working with could not provide their own stimulation. If left alone for two minutes, they would fall into an almost sleep-like state. With a maximum of six hours per day, we could not afford to waste even a minute of their time.
The next morning I called a staff meeting and made an announcement. No child shall be without stimulation for a single minute, from the time he enters the building until he leaves. Within a week, what had been rather normal looking clinical rooms, were transformed into maximum sensory environments. The floors became a series of ramps and platforms covered with padded mats and textured carpets, as well as vinyl surfaces. Mounted on two walls and the ceiling of each stimulation room was the most exotic light show equipment I could find, so we could produce vivid moving visual images in every corner of the room. We also mounted slide projectors which were synchronized with tape recorders that played into cordless head phones, so we could supply different auditory stimulation to different children at the same time, while allowing them movement throughout the room. Each room also had dozens of sponge balls scattered around the floor which the staff would throw toward, and at the children. In addition, two staff members would constantly move throughout the room changing body position, increasing movement, masking, stimulating taste and smell, and, in general, creating as much disturbance as humanly possible. This is where the children would stay when they were not being taken into one of the many individual therapy rooms where they received their specific individual programs in mobility, language, vision, auditory competence, manual competence, tactility, or academics. The children thrived in this new environment, and progressed at a rate that amazed me.
The stimulation provided to the children in these high stimulation environments was great enough to get through even the poorest sensory channel.
The children were being provided with specific stimulation delivered with the greatest frequency, intensity, and duration possible within the economic and social parameters afforded.Dawn and I remained together for almost four years. Four years in which we had little to offer her except love and attention. No new miracles were found for her. During those four years, Dawn progressed ever so slowly. There was significant progress, but she had a long way to go. Her breathing became fairly stable. Her awareness improved about 1000 percent. Her eyes and face were alert and sparking. She became less spastic and developed some controlled movements of her arms and legs. She developed a great sense of humor and without a doubt understood everything said around her. During those years we employed the combined expertise of our team of therapists, our medical staff, and whatever could be picked up from the literature. Dawn made progress, but it wasn’t sufficient, for Dawn was still dependent upon the intense stimulation of the center environment to keep her going.
Children like Dawn are either turned on or turned off. When they are turned off, everything turns off. The brain virtually shuts down. It is an over simplification, but you are essentially either learning or forgetting. That is, if you are being stimulated you are learning; if you are not being stimulated, you begin to lose what knowledge you have. The brain never remains static. In a very real sense, if you don’t use it, you lose it.
In Pennsylvania in the early seventies, we at U.C.P. worked hard at getting the first “Right to Education” law enacted. Prior to the enactment of the Right to Education, children who were classified below the level of “educable” were denied access to public education funds. Programs such as we had were either funded privately, paid for by the family, or through specific government H.E.W. grants. We saw the acceptance of the Right to Education as a giant step forward for our children with severe problems. With enactment of the new law, all children were entitled to an “appropriate education.” The problem developed with the word “appropriate.”
Having succeeded in getting state education monies for our children, we then came face to face with government controls and guidelines, and a basic dispute as to what constituted an appropriate educational experience for a severely brain-injured child. The traditional care for such children was, and still is, defined as custodial. Custodial care involves changing diapers, feeding, and very minimal therapy. Therapy which rarely exceeded range of motion. Range of motion is moving or ranging the joints in an attempt to avoid contractures. Specific sensory stimulation, per se, does not fit into traditional custodial care. In fact, traditional custodial care generally produces a sensorially deprived environment.
What constitutes an appropriate opportunity for any child? How much is enough? How much is too much? How much can we expect the government institutions to do for us?
The Pennsylvania Department of Education moved into U.C.P. with their funding, guidelines, and restrictions. Guidelines and restrictions with which I was in direct opposition. These restrictions restricted the type and degree of stimulation and opportunities which could be provided for children in a state-run school. I lost my battle with the traditionalists. Our school thus became like the others. I could not see my role as running another school for the state, and I resigned my position. A few months later, while on a trip to Barcelona, where I was working as part of a team which visited Spain every three months to design in- home stimulation programs for their brain-injured children, I received a call from the States telling me that Dawn had died. Within six months after having received an “appropriate” education, Dawn and another child from that original group of six were dead.
As stated earlier, the level of function achieved by an individual is a reflection of the stimulation and opportunities afforded the individual by his or her environment.
Brain injury is in the brain. The goal of treatment must be either the creation of function where none exists, or improvement of function where it is delayed or inhibited.
Stimulation “excites” the brain. What does excitement of the brain produce? Functional activity. What is functional activity? Breathing, metabolizing food, walking, talking, reading, etc.
The goal of treatment is to produce functional activity.
Stimulation which is produced in the sufficient frequency, intensity, and duration excites the brain, improves the organization of the brain, and permits increased functional activity.
Bio-Responsive Multi-Sensory Environment
In its efforts to assist a full range of children, NACD has designed an environment which is to be utilized within our facilities for that segment of our clients who are at the lower end of the continuum of function. The comatose, semicomatose, or severely brain-injured child is difficult to assist because of the extent of their injuries, their medical complications, and the extreme difficulty involved in providing such children with sensory input which is specific enough and intense enough to stimulate and organize their brain.
The Multi-Sensory Environment is patterned after the environments designed several years ago for Dawn and for our preschool children. This environment consists of specific intense visual, auditory, and kinesthetic stimuli that is of such intensity so as to be perceived by children with only the lowest level of function. Such an environment with its built-in controls will also be utilized for “normal” infants as well, permitting us to provide for their specific developmental needs.
Greatly enhancing the usefulness of the Multi-Sensory Environment is the application of bio-monitoring and biofeedback equipment. Such equipment permits the utilization of the sensory environment as a bio-responsive, Multi-Sensory Environment. Bio-responsiveness refers to environmental response to biological or physiological action. Bio-monitoring is possible for all of our bodily functions—the electrical activity of our brain, our respiration, circulation, even the tension within our muscles. By monitoring the child’s reactions to various input, we can determine just what input is stimulating the child’s brain, and what is not. Such knowledge will greatly enhance our effectiveness in designing sensory programs for the severely involved child.
Biofeedback, as a branch of treatment and rehabilitation, is relatively new. Even in its infancy, biofeedback technology has proven useful in such areas as the control of seizures, improving circulation, and changing muscle tone. Biofeedback essentially provides us with instantaneous feedback as to what our body is doing, thus permitting us to exert influences over these basic functions that were otherwise unresponsive. This feedback normally is provided by instruments which give us visual feedback (lights going on and off) or auditory feedback (tonal changes or clicks). For the young child or severely involved child, such feedback is meaningless. However, if such feedback permits the child to control the entire intense sensory environment—with intensive visual input and intensive auditory input, as well as the very surface upon which the child lies—we will, hopefully, be able to teach the child to reproduce these movements.
The Right Direction
As parents, we cannot accept limitations placed upon our children’s development. Appropriate opportunities cannot be legislated, and perhaps can never be realized within the confines of a government supported educational system. The economics are just not right. Working together and supporting each other, we can increase the opportunities available for all of our children. The primary responsibility for a child’s education and development must lie with the parents. The National Association for Child Development was established upon the premise that if any of our children are going to have the opportunity to come closer to realizing their full potential, the parents would have to be actively involved in that process of development.
NACD, as an organization of parents and volunteers, is striving to utilize all available resources to gain what expertise is available, and is dedicated to the research and development of new avenues within which to assist our children.
Reprinted from the Journal of The NACD Foundation (formerly The National Academy for Child Development)