One of the greatest frustrations in life must surely be seeing a problem, knowing how to solve the problem, and not being able to do anything about it.
This is the very dilemma faced by the staff of The Institutes and parents on the Intensive Treatment Program when they have a nephew or a niece or a cousin with a neurological problem. It is the dilemma faced by a wise teacher when she sees a little student who she knows has a neurological problem but she herself cannot solve it.
Is there anything more distressing than seeing a child who is just "a little bit" brain-injured and not being able to do anything about it? And although he is just a little bit hurt, you know in your heart of hearts that this "little bit" is going to cause him some very large problems along the way, because no one but you knows that he is brain-injured.
And that is his biggest problem.
Perhaps, it is even a bigger problem for him than being brain-injured.
The fact that no one understands what is wrong with him means that he will be expected to perform as well as his peers, and when he fails to do so, desperate, illogical, and unscientific measures may be used to get him to toe the line. Slow classes, remedial classes, special education classes, the use of amphetamines, psychiatric drugs, inappropriate surgery, psychiatric therapy–these are just a few of the possibilities that a child who is "almost perfect but not quite" faces when the world decides he is just not good enough.
The tragedy, of course, is that none of these desperate measures has anything to do with treating the brain.
No one knows he has a neurological problem but you, and you are going to have a devil of a time explaining to your brother, or sister-in-law, or neighbor that the reason his or her child has just flunked second grade is not that he is "naturally slow" or "stupid" or "lazy" but that he has a strabismus.
You are wondering how to explain to your best friend that his six-year-old, who expresses himself poorly and runs around from morning until night driving everyone absolutely crazy, will not, in all likelihood, "outgrow" his hyperactivity, and that taking a child with a problem in the central nervous system and placing him on amphetamines (Ritalin) will not only not be helpful to his central nervous system but, indeed, harmful.
Why isn't it obvious to your cousin that if his eight-year-old can't quite keep up with his classmates that he will never have a chance to catch up if he is placed in Special Ed, where the well-intentioned teachers will move at a third of the pace of a regular class and where, if you placed a totally well child, he would be behind at the end of a year!
Why indeed?
In a totally sane and properly educated world, the simple answer to solve each of these problems would be to give each parent of these children the book What To Do About Your Brain-Injured Child and ask them to read it.
But it is not a sane, properly educated world. The fact of the matter is that we all know that if you give your brother or cousin or best friend or next-door-neighbor a book called What To Do About Your Brain-Injured Child that same brother or best friend or neighbor may never speak to you again. They don't know that their child is brain-injured, and this is not the best way to introduce the idea. It is simply too steep a learning curve for most people.
Instead, most parents have to suffer through endless theories as to why Johnny can't read.
Of course, Theory Number One is Johnny is stupid.
This is a tough one to defend since Johnny has always proved to be pretty good at doing everything that other kids can do. It is only in reading that he seems to run into problems. So what is wrong with Johnny?
Theory Number Two is Johnny's teacher is stupid.
This was a very popular theory and countless thousands of dollars were spent studying teachers and their methods. The studies showed that there was a remarkable consistency when it came to children who had reading problems. Regardless of how they were taught to read in school, approximately 35% failed to read at grade level. And as for that allegedly "stupid" teacher, how could we explain that she successfully taught 65% of her kids to read? If she was so incompetent why didn't all of her kids fail?
Theory Number Three is that Johnny has psychological problems.
This was a very popular theory thirty-five ago. It was noticed that children who fail to learn to read as well as their peers often have a low sense of self-esteem. The notion was that the low self-esteem actually caused the reading problem. We had some trouble with this theory. We reasoned that if a child lived in a society where reading was very important and, if virtually everyone else in that society could read and, if the child found he could not read, was it not a sign of sensitivity to be aware of this fact? Did it not demonstrate intelligence and sanity on the part of the child to be able to observe the difference between the way things were and the way things ought to be and be struck by the difference?
Would it have been better if the child with reading problems had not been bothered by the fact that he could not read as well as his peers?
In addition, we found that when these children were put on a neurological program they quickly began to improve. As they began to be able to read they felt quite happy about themselves. Indeed, when we successfully got these children reading at grade level or above, they had no self-esteem problems whatsoever.
Given the climate of the time thirty-five years ago, Theory Number Four was entirely predictable. According to this theory it was thought that it was not that Johnny was stupid, or that his teacher was stupid, or that Johnny had psychological problems, but rather it was Johnny's mommy who had psychological problems.
Again a study was done that showed (and I know that this will surprise some people) that mothers of children with learning problems are tense. In fact, these mothers are often very tense. In this theory it was hypothesized that these children with learning problems were the product of these tense mothers. The much-beloved notion of the "refrigerator mother" was born. This idea from the Dark Ages would later be trooped out again to explain why "autistic" children were the way they were.
Now we conducted a little study of our own on this theory and we found that the initial observation that inspired the study was absolutely correct: Mothers of children with learning problems are tense–in fact, they are very tense. They are terrified that their children are going to fail to learn to read and that, as a result, their lives will be ruined. This might be a reasonable cause of tension, might it not?
However, we found that when the children of these very tense mothers are put on a neurological program and actually begin to read and write and learn as well as their peers, these mothers lose their tension and they become pretty much indistinguishable from other mothers.
Teachers had it right thirty-five years ago when they recognized that hyperactive children and children with reading or learning problems were the great educational dilemma of the day. The teachers not only identified the exact children who have neurological problems, but they quite correctly recognized that the problem was in the child, not in the teaching method, not in the teacher, not in the parents of the child, but in the child himself. Had teachers been listened to when they first proposed this, the world would be a lot further along today than it is.
The problem is that people are still afraid of the brain.
This is a shame, since it is surely the most fixable organ in the human body. These children who are only a little bit hurt are going to have, in most cases, very large problems. This would be tragic under any circumstance, but it is particularly tragic when the nature of their problems is very well understood and has been for many years, and the solution to their problems is very well understood and has been for many years.
When children who are incoordinate and hyperactive finally do arrive at The Institutes–sometimes after years of failure and frustration–we place them on just as intense a program as a child who is blind, deaf, and immobile. We do so because the hyperactive child needs to be well as fast as possible. We want him well tomorrow morning. His parents wanted him well yesterday. In this regard, they are just like the parents of a blind, deaf, and immobile child.
When a child who has a reading problem comes to The Institutes, usually after enduring years of degrading and ineffective tutoring or "remediation", we place him on just as intense a neurological program as a child in a coma. It is a completely different kind of neurological program to be sure, but in its own way it is just as intense. We do this because the child with a reading problem needs to get back to school with his well peers and get on with his life as soon as possible.
The big difference, of course, is that it is much easier to fix a child who is just a little bit disorganized than it is to fix a child with a gigantic problem. This makes it all the more frustrating to realize that fully 35% of youngsters will fail to learn to read at grade level. The vast majority of those children will fail because they have mild neurological problems that could and should be fixed. The price of not fixing one of these children is very high indeed for the child and for the society who must deal with him as he tries to grow up and take his place in a world where there is no place for him.
These children are not lazy, they are not crazy, and most especially they are not stupid. Instead, it is remarkable how hard they try, how sane they are, and how smart they can be. They know they have a very large problem. However, they have no way of knowing the nature of that problem. They simply hang on, hoping against hope, that the cavalry will arrive and they will be saved.
We sometimes sit poised just at the top of the ridge, waiting for just the right moment to charge, and the moment never comes. We watch a child we love die in pieces, one day at a time. When that happens, we die in pieces a little bit too.
We are the cavalry. We have the means and we have the courage. Now all we have to do is–charge!
by Janet Doman
