Glenn Doman's Legacy: Genetic Diagnoses and Brain Injury
In May 2019, there was a front-page article in the Wall Street Journal. It was titled, The Unfulfilled Promise of DNA Testing. With it, there was a picture of a cute little girl, the victim of the DNA testing chaos. The article is spot on and explains the problematic issues involving the genetic diagnoses that the parents receive.
There is a long history of genetics and children with special needs. I have lived through a lot of this history. It is a part of Glenn Doman’s legacy that he figured out the problem sixty years ago and offered solutions for parents. These solutions meant significant progress for children with special needs and brain injury.
It is a very human desire for parents to have the correct diagnosis for their children. A large part of the chaos that exists in the world of children with special needs and their parents is the lack of a correct and true diagnosis. In the book, What To Do About Your Brain Injured Child, Glenn Doman recalls a meeting he had, in the 1960s, with a very famous psychiatrist.
“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.” (p. 222)
WHEN I WAS SIX YEARS OLD
Sixty years later the confusion still exists and has actually gotten worse. This is particularly the case for children with genetic issues.
My father, Glenn Doman, always permitted his children to sit with him when he saw brain-injured children and their parents. His policy was very solid. We could stay with him as long as we wished, provided we paid attention and were not a distraction.
I would sit in his office and after a full day of evaluations and tests, he would accept the family onto the program. He would say, “As a result of our evaluations, there is no question that your child is brain-injured.” I sat with him time and time again. I could never understand the reaction of the mothers. We moved to the Institutes when I was two. We lived in the same building with thirty brain-injured inpatient adults. My father was the director and my mother was the head nurse. As a six-year-old, I had lived my entire life with brain-injured adults and children. When the mothers were told their child was brain injured, they would immediately burst into tears. I could never figure this out. Why? It was obvious the child was brain injured, even I knew that at six. Sixty years later, in retrospect, I now understand that the diagnosis of brain injury would be the equivalent of being told today that my child had a terrible disease. Yes, I would burst into tears. Finally, the world is catching on that the correct diagnosis is brain injury. There is a two inches thick medical textbook for MDs titled, Brain Injury.
Going back sixty years ago, virtually all parents of special needs children were told that their children were what they were because of abnormal genetics. Parents were told this in the absence of any genetic tests because MDs could not figure out any other reason. As the genetic tests improved, it was understood that very few brain-injured children have genetic problems. The only exceptions were the Trisomy-21 babies who were easy to identify, even without the genetic tests.
Fifty years ago, we began accepting these Trisomy-21 children onto the Doman Method program. Our program may not change their genes, but it does develop their brain. Thus the symptoms of a lack of language, organization, fine and gross motor problems began to disappear. We began to graduate these children to wellness. They went to school not as special needs children but as equals with their peers.
Around twenty years ago, the situation began to change. The genetic tests markedly improved. New kinds of genetic disorders were discovered. Mothers began to contact us saying their young child was the sixth child in the world with this genetic abnormality. Of course, this horrified parents. If there were only six in the world, then no one had any idea of what to do for these children. No one knew how to improve their condition and quality of life. Now, today dozens of genetic disorders with a neurological component have been identified. Each has a different name. This adds to Dr. Menninger’s confusion. It creates smoke for parents and professionals.
It is true that because of the identification of these disorders some children’s lives have been saved. This is wonderful. Some of the genetic disorders have biochemical components. For example, some children cannot eat certain foods that could be toxic to them. This is genetic testing at it’s best. However, for most children, they are told by “experts” that the child’s newly provided genetic diagnosis is a life sentence and the child is hopeless.
BRAIN INJURY IS IN THE BRAIN
This is Glenn Doman’s Legacy of more than sixty years. Many of the genetic disorders do not have any particular biochemical components. The biggest problem these children have is neurological. They cannot walk or talk, or read, or write. They may have these capabilities, but they are significantly behind their peers. For sixty years we have known that these children can develop and in some cases become as able as their peers, as has happened with the Trisomy-21 children.
We have now seen children with dozens of genetic disorders. Some of them have been in research studies showing that such children at best may be able to walk and talk poorly but will never intellectually come close to their peers. In one study it showed there was one child who was exceptional. Only that child was able to run, and talk, and was intellectually above average. That was a girl on our program. She is the only outlier, way above the rest of the group. Our kids show the potential that these children have with new and strange genetic disorders.
There is an unwritten belief that because there may be only six, twenty-one, eighty-seven of these children have been identified, that nobody knows anything about them. There is nothing new about these children. The genetic issues existed twenty-five, fifty, one hundred years ago. True, the genetic test had not been developed to identify these children. But they were here and in many cases on the Doman Method program and doing very well decades ago.
We now know that none of us are perfect neurologically. We all have some brain injury. I will go out on a limb now. I suspect that none of us are perfect genetically -- that all of us have some genetic abnormality of some kind. Like brain injury, the question is, does it show? Does it stop our children from doing what they want to do in life?
For those children who have a genetic disorder, with a neurological component, let us never forget that brain injury is in the brain. We can teach parents to treat it very effectively. The quality of life of the children is far better than the parents had dared to hope. In some cases, these children with genetic disorders can make it all the way, succeeding in school and alongside their peers.