This article is longer than usual but hopefully people will find it worth the effort. Plus, it’s my blog so I get to do that. It is dedicated to the good folks at the Global Hydranencephaly Foundation in celebration of June 2013 being Unofficial Hydranencephaly Awareness Month. The symbol of the foundation is the bumblebee because “Aerodynamically, the bumblebee should not be able to fly. But, the bumblebee does not know that so it goes on flying anyway.” Our little bee, Mackenzie Nelson, and her family – Derek, Desiray and Eliana – are a living testament to everything that follows.
While we might agree that every child has the right to be born intact and to enjoy good health and development, it is not, unfortunately, every child’s good fortune. As you are reading this article, somewhere in the world a child is being born with some degree of neurological problem, including Hydranencephaly. Another child is losing function as a result of an illness or accident that has damaged his good, well-developed brain.
At this very moment, a profound drama is beginning its first act, a drama that will plunge the child’s family into the depths of despair and that will, in some way, affect every person who has contact with this child throughout his life. Often, he will be an enigma to his parents, brothers and sisters, extended family, friends, teachers and even doctors.
It is precisely because this child was so poorly understood for so long that we tend to view his situation as one with no hope for improvement. Indeed, professionals are especially careful not to enkindle any hopes whatsoever in the fear that those hopes might prove to be false ones. The effect of telling parents that nothing can be done is devastating.
One of the things that is most important to mothers and fathers, and that indeed is part of the very nature of a parent, is the sense that they have some measure of control over their child’s well being. This is true whether we are talking about a child faced with an illness, a difficulty in school, or a problem in behavior. Parents naturally want to be involved in the solution to the problem. However, when confronted with a brain-injured child, the parent’s natural desire to be of help is frequently suppressed. Consequently, a desperate situation becomes worse as the parents, perhaps for the first time in their lives, feel completely powerless and therefore can only see themselves as inadequate. For parents there is nothing in the world that is more painful or more frustrating.
[callout title=Hope…]There is always hope, even in children with profound brain injuries. To deny this hope is to deny the biological reality of brain plasticity.[/callout]
What I bring to you today is the good news that this need not be so. It may come as a surprise to many of you, but far from being hopeless, the brain-injured child, even the child with severe problems, is a child with enormous potential. Certainly it is a potential as yet unrealized and a potential that will only be realized with special effort. But it is a potential that is there just the same.
There are, I think, only two questions that we need to consider. First, how do we know that this potential exists, and then how do we bring it to realization?
The answer to the first question has to do with what neuroscientists call brain plasticity. Brain plasticity is the ability of the brain to modify its structure and chemistry in response to stimulation from the environment, the use of motor ability and presence of adequate nutrition.
Brain plasticity has been an area of scientific interest for more than a century. Boris Klosovskii, a Russian neuro-physiologist, started his work in this field in 1934. Neurophysiologists have known since the 1950’s that increased environmental stimulation will create structural changes in the brains of animals.
For several decades, brain plasticity in human beings was also suspected by many neurophysiologists and by a small number of people who pioneered new approaches to the developmental problems of brain-injured children. Glenn Doman, one of the great pioneers in work with brain-injured children, said in his 1963 book, How to Teach Your Baby to Read, “It had always been assumed that neurological growth and its product, ability, were a static and irrevocable fact: This child was capable and that child was not. This child was bright and that child was not. Nothing could be further from the truth. The fact is that neurological growth, which we had always considered a static and irrevocable fact, is a dynamic and ever changing process”.
Neurophysiologist David Krech, who performed many classic experiments with rats, said in a 1966 paper, “Although it would be scientifically unjustified to conclude at this stage that our results do apply to people, it would, I think, be socially criminal to assume that they do not apply – and, so assuming, fail to take account of the implications”.
The difficulty was that plasticity in human brains was virtually impossible to prove scientifically without actually doing a physical examination of the brain. There was a veritable mountain of empirical evidence in favor of plasticity in humans but it was all circumstantial evidence and therefore unconvincing to most scientists. The breakthrough came with the invention and later refinement of CAT and PET scanning technology, which allows one to see the brain in great structural detail and to see it in action as it is performing its functions. This technology proved beyond any doubt that, as Doman and Krech suspected so long ago, neurological growth is a dynamic and constantly changing process.
The importance of this biological reality for the brain-injured child, including the child with Hydranencephaly, is incalculable because it means that functional ability can be created. It means vision can be developed in children who are neurologically blind. It means the child who is neurologically deaf can learn to hear. It means the immobile child can be taught to move and perhaps, eventually, to walk. It means the child with learning disabilities can be brought to intelligence.
We have, in fact, done all of these things many times. Obviously, we can never guarantee that we will succeed in accomplishing these extraordinary changes. Nevertheless, we at least know that the potential to do so exists. And that means there is always hope, even in children with profound brain injuries. To deny this hope is to deny the biological reality of brain plasticity.
Now we come to my second question. How do we realize this extraordinary potential that exists in every child? How do we fulfill this hope for improvement?
The human brain is, without question, the most complicated thing in the known universe. But what you may not realize is that its development is actually governed by very basic laws of nature. So, the brain is a great paradox, at once complex and simple. And surprisingly, the answer to this question about the realization of potential is also quite simple.
It lies, first of all, in understanding that optimum brain function is a prerequisite to successful function in life. All functional ability is the direct result of the natural and orderly development of the brain. Any significant interference in neurological development, regardless of the reason, will result in either a significant lack of function or abnormal function. The achievement of one’s potential is therefore directly dependent on the function and development of one’s brain.
Secondly, it lies in the fact that brain development is governed by several very basic principles, and that, not only can it be slowed down or stopped, as happens with injury, but it can also be accelerated. The first principle is that the brain grows through use. This is because of a simple law of nature that says that function determines structure. We see this easily in the muscles of the human body. If I lift weights frequently my muscles will develop, becoming bigger and more effective. The magnificent thing about the human body is that this law applies not only to muscles and bones, but also to the brain. Brain plasticity exists because function determines structure. When the brain’s functions are in use the brain grows. And just as with the muscles, if there is a lack of function or abnormal function there will be a lack of structure or abnormal structure. It is inescapable because it is a law of nature. The second principle that governs brain development says that the most efficient way to get information into the brain is to increase the frequency, the intensity, and the duration with which the stimulus is applied. This is essential.
The third point is that optimum brain function is best achieved by placing importance on three fundamental areas: enhanced sensory/motor function, structural integrity, and optimum physiology. These three areas are interdependent and therefore influence each other as well as brain function in general. This is what we mean by holistic brain development. We recognize that our chances of success increase significantly when we take into consideration all factors that play a role in successful brain development and function. And we realize that our job is to follow the natural path that has been so beautifully designed for every child.
The fourth and final point is that we recognize that the child’s best chances for improvement lie within the family. First of all, it is the family’s responsibility to develop, educate and care for all of its members. Professionals of all sorts have convinced us to abrogate our responsibilities. As a result, parents have become convinced that they are inadequate for the job of raising their own children, particularly when the children have developmental problems.
This is a grave mistake because there is no greater or more dynamic learning team than that of the family. Mothers, when able to trust their instincts, know exactly what their children need and when they need it. Mothers and fathers, when properly guided, are the best teachers and therapists that any child will ever have.
There is a very simple reason for this. Parents know their children better and love their children more than anyone else in the world. I can honestly tell you that in the 37 years I have done this work I have loved, in my own way, virtually every child I have seen. But the quality of a parent’s love is different from my love. It is not very scientific to talk about love. You can’t measure it with a ruler; you can’t put it on a scale and weigh it. Nevertheless, I have watched it work miracles for many years and I long ago gave up trying to explain it. I only know that it is there and I am a fool not to take advantage of it.
We professionals need to start treating parents as equals in the fight for their children’s lives. Certainly, parents need our guidance, but they are the key to victory. In short, we need to start treating parents with the respect they deserve. From the poorest to the richest, from the most ignorant to the most educated, they deserve no less. We should do so because the children’s lives depend on it.
Another reason the family is the ideal place for our work is that, when it is done in the family, we can work on a much more intense level and we can do so very economically. Our project in Venezuela, Programa Leopoldo, serves the poor nearly free of charge. This is only possible because we are empowering parents to carry out their roles as their child’s most important teachers.
So, you might ask, what does this approach, the work of the REACH Family Institute, mean? Let me give you three related but different meanings – one for the brain-injured child, another for the child’s family and still another for the larger society.
For the brain-injured child the meaning is obvious enough. It can mean the difference between sickness and health, between blindness and sight, between low intelligence and high intelligence, between paralysis and mobility. Sometimes, it can literally mean the difference between life and death.
For the family, I think the meaning is also fairly obvious. It means a ray of hope in the dark night of despair. It means active participation rather than passive acceptance. It means an opportunity to become part of something larger than ourselves, what Viktor Frankl, the great Austrian psychiatrist, calls the “transcendent experience”, as we give ourselves to the task of making a difference in a child’s life.
And what does our work have to say to society at large? What lesson is it trying to teach us? I suggest to you that the most important thing the REACH Family Institute has to offer the world is that it celebrates the idea that every human being has inherent value and dignity. This value and dignity is not based on level of education, net worth or level of function, but simply by virtue of the fact that one is a human being. Sadly, the world today is immersed in a quality of life ethic that devalues the dignity of anyone less than perfect. For me, the work of the REACH Family Institute is the antidote to this ethic. I don’t know exactly how to describe it to you but there is something transforming that takes place when one works nose to nose with a child who has difficulties. Somehow it makes one a bit more human and a bit more humane. Such experiences are food for the soul. I truly believe that these children are our most precious natural resource. This is not because of what they can do because obviously many of them can do nothing in a functional sense. But rather it is because of what they do to us. So ultimately, the REACH Family Institute is about human dignity and the intrinsic value of human life.