Who is Brain-Injured?

I have had many people ask me about my use of the term "Brian-Injured" and what kind of person to which this refers. It is a fabulous article, and I hope you will take them time to read it in spite of its length. It is by Glenn Doman, a man to dedicated his life to brain-injured children at a time when such children were supposed to be hidden from view.

Who is Brain-Injured?

If everyone could simply agree on what is meant by the various terms used to describe brain-injured children, we'd be a long way along the road to solving such problems.

The American psychiatrist Dr. Menninger, of the Menninger Clinic, once told me that when man encounters a mysterious illness he is inclined to label it, to hang tags on it, because he feels that by doing so he has somehow achieved a degree of mastery over it. Dr. Menninger pointed out that this rarely adds to the clarity but instead adds to the confusion.

Confusion of terminology is certainly a problem in the world of the brain-injured child. That's why this book is entitled What To Do About Your Brain-Injured Child, or Your Brain-damaged, Mentally Retarded, Mentally Deficient, Cerebral-palsied, Epileptic, Autistic, Athetoid, Hyperactive, Attention Deficit Disordered, Development-ally Delayed, Downs Child. Now that, admittedly, is a terrible name for a book, and all you can say is, "What the devil does that mean?"

That is exactly what I'd hope you'd say because that's exactly the question that needs asking. What the devil do all those words mean?

If you are the parent of a brain-injured child, you have surely heard all of these words. It is quite possible that different specialists have given your child most or even all of these names. We see tiny children who have been diagnosed as every one of those things, each in a different institution, and when I look at a tiny two-year-old child I wonder if it is really possible for one little girl to have so many terrible diseases-if diseases they are.

Just what do these terms mean? Are brain-damaged children the same as mentally retarded children? Are all such children emotionally disturbed, or is that a different problem? What of children with cerebral palsy? Is this one kind of condition when the child is bright, and something else when he is mentally retarded? Are all cerebral palsy children spastic, flaccid, rigid, or all three? Always? Sometimes?

Just what do these terms mean? Do they mean what they say? If they don't mean what they say, then what do they mean?

Let's take the term emotionally disturbed. Many brain-injured children are diagnosed as being emotionally disturbed. What does this term mean? Is it intended to replace brain injury as a diagnosis; that is to say, is this child emotionally disturbed rather than brain-injured? Or is he suffering from two different diseases simultaneously? Just what disease is emotionally disturbed, or is it, in fact, a disease at all? What does the term mean? If it means what it says-emotionally disturbed-then I can say that I, one of the most fortunate of men, find myself emotionally disturbed twenty or thirty times a day about one thing or another. I have a sneaky suspicion that you do, too. I don't believe that anyone in his right mind could read the front page of any large metropolitan newspaper without being emotionally disturbed over virtually every front-page story. At least he should be emotionally disturbed if emotionally disturbed means what it says. On the other hand, if the term emotionally disturbed as used to diagnose brain-injured children does not mean what it says, then the overriding question which remains is: What does it mean?

Or let's take what is probably the best-known term: Cerebral Palsy. Cerebral means brain and palsy means paralysis. To some people palsy means to shake. Since the brain can neither shake nor be paralyzed, the term cerebral palsy clearly does not mean what it says. The question then is-what does it mean?

One great authority on the subject of cerebral palsy has said that cerebral palsy means a highly specific set of symptoms produced by a highly specific and specifically located type of brain injury. Fair enough, and that would do for a term and a diagnosis were it not for the fact that another great authority has said that cerebral palsy means a very different thing. He has said that cerebral palsy is anything that happens to a child from the neck up. Also fair enough, if it were not for the first authority. Unhappily this disagreement does not end with these two authorities. There are virtually as many different meanings as there are authorities in the field, and there are many authorities.

Nor does refinement of terms necessarily help.

The term cerebral palsy can be broken down into several different sub-categories, one of which is athetoid cerebral palsy. In some classifications this term is then broken down further into sub-terms describing ten or twelve types of athetoids. Dr. Fay, who had personally authored or co-authored several classification methods in an early attempt to bring some order out of chaos, used to say rather ruefully that there were actually only two types of athetoids. The two types, Dr. Fay used to say, were "them as had it and them as didn't." That reduced the types of athetoids rather considerably. We come, in the end, to agree with Menninger that "refining the terminology" added to the confusion rather than to the clarification.

The trouble with almost all of the names we have discussed and the many others that exist is every time we use them we are compounding the easy error of mistaking the symptom for the disease.

A good example is the very popular term mental retardation. An American adult would have to be not only televisionless and radioless, but deaf and blind as well, not to have heard this term over and over again. "Mental retardation can strike any home." "Every two minutes a child is born afflicted with mental retardation." "Fight mental retardation." "Give money for research into the cause of mental retardation." "This child is a victim of mental retardation."

Doesn't all this leave the impression that there is a disease called mental retardation? There is no such disease. Mental retardation is a symptom and, like most other symptoms, is a symptom of many very different diseases. One can have the symptom, mental retardation, because his mother and father have incompatible Rh factors. One can have the symptom, mental retardation, because he got hit by an automobile. One can have the symptom, mental retardation, because he was born with the umbilical cord wrapped tightly around his neck. One can show the symptom, mental retardation, because he had measles, which resulted in encephalitis, and so on through a hundred very different diseases and injuries that can result in the symptom of severe, moderate, or mild mental retardation.

To talk about mental retardation as if it were a disease is not only unscientific but, what is more important, seriously delays the finding of rational answers to problems. Because this point is so important, I must risk belaboring it to be sure I have made myself clear. Let's take a clear and fairly precise analogy.

Let's suppose that today someone should announce that he has discovered that seven million Americans have a Fever and that this condition can be as serious as it is mysterious. Suppose that he should announce that this mysterious illness of elevated temperature, or Fever, ranged in effect from a mild inconvenience at one end of the spectrum to actual death at the other and that this very day hundreds of Americans would die afflicted with Fever. Suppose he announced that every eight seconds an American was born who would someday be afflicted with fever. Suppose finally he announced that he had just found out that there was no American Fever Society and that he was going to raise millions of dollars to organize such a society for the purpose of combating the killer, Fever.

If that should happen, it is to be hoped that someone would say to this man, "Each of the things you have said is true. You are obviously motivated by the highest and most selfless intentions, but you must not do this. While each of the things you have said is true, the conclusion you have drawn is untrue. Fever is not a disease but is instead a symptom of many different and unlike diseases or injuries. If you form such a society you will convince many people, and even some professionals, that there is actually such a disease. This will hide the truth and, in the end, be a disservice to mankind."

This is what has actually happened as a result of the popularization of that very imprecise term, mental retardation.

Mental retardation is no more and no less a symptom than is fever; neither symptom is a disease. If one successfully attacks the disease of which fever is a symptom, the fever will disappear spontaneously, as is the case with the symptoms in other diseases. By the same token, if one successfully attacks the brain injury of which mental retardation can be a symptom, the mental retardation will also disappear spontaneously.

How did this term arise and what does it actually mean?

Most people use the term, mental retardation, to describe children who do not learn as quickly or are not able to learn as much as average children. The symptom of mental retardation can be present in a child because of the combination of genetic factors. This is true in only a fraction of the children who have the symptom.

The term mental retardation was coined in an effort at kindliness. So many human problems begin with someone saving someone else from something he hasn't asked to be saved from. Before the term mental retardation was coined as a subterfuge to protect parents from what was considered to be too harsh a truth (harsh it was, truth it was not), we measured intelligence that fell below average (100 being average or normal) and, having done so, we classified sub-normal children into groups according to their scores, and such groups were called morons, idiots, or imbeciles.

Since it seemed very harsh to tell a parent that her child was a moron, idiot or imbecile, society invented a euphemism, "mental retardation". This term, in a literal sense, was a splendid choice, which labeled the problem quite well. It is what was eventually done with this good, but symptomatic, term which was the problem. It did not take parents long to come to the conclusion that it was not a compliment to be told that their child was mentally retarded and that what this term really meant was that their child was a moron, idiot, or imbecile.

The parents were not fooled, but now professionals had at least two diseases, idiocy and mental retardation.

It took several years for those who dealt with the parents to come to the conclusion that mental retardation meant idiot to most parents, and so an even newer term was coined which was an even greater euphemism. This new term to describe children with below-average intelligence was exceptional. To call a child with a low I.Q. exceptional was again literally true, but what a splendid euphemism it was. To say that such children were exceptional children rather implied that such children were somehow better than other children.

Again the parents were neither flattered nor deceived by such terms. Parents know precisely what their children can and cannot do. Parents very quickly decided that it was not good to be told that their children were exceptional. They decided that what that really meant was mentally retarded and what that really meant was moron, idiot or imbecile.

Again parents were neither deceived nor mollified, but now we professionals had at least three diseases-idiot children, mentally retarded children, and exceptional children.

Mental retardation is not a disease, it is a symptom. Idiot, emotionally disturbed, flaccid, spastic, quadriplegic, paraplegic, hemiplegic, diplegic, and a host of other terms by which brain-injured children are called, are all symptoms and none of them are diseases.

We do not believe that it is helpful to say that there are hundreds of different categories of children whose problems exist within the brain. We have learned how to help those children who are brain-injured. We do not know how to help children who are not brain-injured. Perhaps, one day we will have answers for all children. We believe that all the children we see can be placed in three simple categories:

I. Children with peripheral problems
II.Children with psychological problems
III.Children with brain injury

I. Children with Peripheral Problems

It is important to recognize that the nervous system consists of two main parts-the central nervous system (CNS) and the peripheral nervous system (PNS). The central nervous system consists of the brain and spinal cord.

Some individuals have problems due to disorders that are outside the central nervous system or brain. These disorders may include conditions affecting the peripheral nerves, neuromuscular junction, or muscle. These people may have motor or sensory problems, but the cause is not in the central nervous system or brain itself. An example of such a condition is peripheral neuropathy, which may present itself with motor or sensory symptoms. Some individuals have a neuromuscular junction disorder. They can also have weakness, but the weakness is due to a problem at the junction between the nerve and muscle, not due to a brain injury. Some individuals have a muscular dystrophy, or muscle disease. These people may also have weakness, but in this case the weakness is due to the muscle, not the brain. Sometimes central nervous system and peripheral nervous system problems co-exist.

The Institutes program is intended for individuals with central nervous system disorders. It is not intended for individuals with problems exclusively due to peripheral nervous system disorders, neruomuscular junction diseases, or muscle diseases. In most cases, these problems have been identified beforehand.

II. Children with Psychological Problems

In some cases, a previously well child with no past history of a structural brain injury will develop psychological, emotional or behavioral problems. Scientists and doctors are trying to understand the complex biological or chemical changes that may occur in the brain, accompanying some of these conditions. Some of these children may benefit from programs emphasizing good nutrition, elimination of allergies and detoxification. Programs focusing on a good physiological environment and programs for social, physical and intellectual excellence may also be of helpful.

Many children with brain injury have what society has called "psychological", "emotional", or "behavioral" problems. Some of these children may even be said to be "psychotic". The brain runs everything in the body. Some children who have been diagnosed as "psychotic" are not psychotic at all but brain-injured. When this is the case as the brain responds to neurological treatment, these behavioral problems resolve.

III. Children with Brain Injury

When we at The Institutes for Achievement of Human Potential speak of a brain-injured child, we mean any child who has had something happen to hurt the brain. That something may occur at any time. It may occur at conception, or a minute, an hour, a day, a week, a month, or nine months after conception. It may occur during birth or a minute, an hour, a day, a week, a month, a year, or ten years after birth. It may also happen seventy years after birth, only then he is called a brain-injured adult.

If you could look at the injured brain in the operating room, you might even be able to see the injury which could consist of highly visible harm confined to a small area, or of harm essentially invisible to the naked eye and spread over a broader area. In some cases, the problem may only be seen under a microscope. In some cases the disorder is at the level of cellular function and may not be able to be seen at all with current technology. In some cases, brain studies, brain imaging, electroencephalograms (EEGs), evoked potentials or other tests may be abnormal. In other cases, these studies may be unremarkable. The brain may be severely hurt or it may be mildly hurt. It may be hurt in a way that limits walking or talking or hearing or seeing or feeling, or a combination of these.

Sometimes different injuries have occurred to a child at different times. Sometimes the child will have a clear-cut cause for the brain injury, such as a major trauma or infection. Sometimes no clear cause for the brain injury will be found. When this book speaks of the brain-injured child, it means a child who has a hurt brain from one of, or some of, any number of causes. Although sometimes the causes may be similar, each case is unique because it effects a unique individual-a child with his own unique potential.

1. The Acutely Brain-injured Child: Some children have brain injuries due to causes that require immediate or emergency medical or surgical treatment. These injuries may be due to an infection, hemorrhage, tumor, trauma, progressing hydrocephalus or one of a number of conditions that need to be acutely addressed to insure the survival of the child and to limit the harm done to the brain. This care is usually given in an emergency or hospital setting. After this acute stage, the child may be left with residual brain injury. The brain-injured child may have various degrees of problems in walking, talking, hearing, seeing,, or feeling. When left untreated, these problems may become chronic or permanent. We see the brain-injured child after the acute and life-threatening problems have been managed and stabilized. It is important that this child receives treatment as soon as possible to help speed recovery. However, even those who have been brain-injured for many years can benefit from treatment.

2. The "Mentally Deficient" Brain-injured Child: Formerly called "mentally deficient", this child is one in which there is a malformation or abnormality of the brain. This may be on the basis of a genetic disorder such as Down syndrome, or due to any number of problems that can effect the development of a child's brain before birth. There may be malformations of other organs or other body features as well. At one time it was thought that children with brain malformations or genetic problems would not benefit from treatment. Many were confined to mental institutions for life. We have had many brain-injured children on our program who have had CT or MRI scans that show abnormalities of brain development. These malformations can include gyri (convolutions) that are too big or too small, or lobes of the brain or other structures that are malformed or missing. We have also seen children with abnormalities of gray or white matter development, sometimes referred to as heterotopias or migrational disorders. We now know that although the brain may appear structurally different, it will respond to stimulation and treatment. These children are candidates for a neurological treatment program.

3. The Brain-injured Child with Neurodegenerative Disorders: Children with neurodegenerative disorders may have diseases or conditions that cause the progressive destruction of the brain and nervous system. In some cases, a metabolic factor or some other problem can be found which may be modified by nutrition, or by altering the physiological environment of the brain. This allows us the opportunity to treat the residual brain injury. In other cases, a disorder may be causing rapid relentless destruction of the brain and nervous system. Fortunately, such cases are rare. In such cases, we may not be able to make a significant impact with our program.

Brain injury can occur at any time. Brain injury can be due any of a number of causes. Sometimes the cause of the brain injury is not fully understood. Sometimes, brain-injured children will be given labels by medical professionals, educators or society. Those labels are not diseases but symptoms of one problem-brain injury.

There are literally millions of brain-injured children. I might paraphrase Abraham Lincoln, and I am sure he would not mind in the least if I said that "God must have loved the brain-injured children because he made so many of them."

These brain-injured children are wonderful kids, they need and deserve our help. We now know that a program of neurological organization will yield results in most brain-injured children. In the future, perhaps there will be answers for all brain-injured children.

by Glenn Doman
from
What To Do About Your Brain-Injured Child