JOURNAL OF THE NATIONAL ACADEMY FOR CHILD DEVELOPMENT
1980, Volume 1, No. 1
Sensory Stimulation
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.
Appropriate Education
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.
Stimulation
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
Academy 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 National
Academy for Child Development
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