Parents Facing the
Supreme Challenge
The mother of a child who was born with profound neurological impairment writes about the shock parents feel when they learn of their child’s disability, and the enormous blessings
that can come from what they first saw as an insurmountable misfortune.

By Christine Vollmer

The greatest fear deep in the hearts of young parents is that their child could be born with some kind of impairment, that it not be “normal.” Indeed the first thing that young mothers do when their babies are born is to check that everything is there and in place. Their greatest joy is seeing that the baby is a clever baby and accomplishing his milestones on time, or perhaps even before he “should.” I do not believe that this is a result of any societal over-emphasis on brains and achievement. Rather, I think it is a deeply ingrained protection, meant to be entirely to the benefit of every baby born into the world.

Thus when a baby is born with damage to the brain, as our Leopoldo was—be it because of perinatal trauma, genetic causes, or some infection or deficiency in the course of the pregnancy—the news of the child’s disability hits the parents as the most profound tragedy which could possibly occur. Most young parents manage to hide their utter desolation with great courage, and their anguish is concealed beneath the activities the baby demands: tests, examinations, therapy, and so forth. Others deal with their distress by cultivating an unrealistic hope, or imagining that their baby will “grow out of it.”

But in fact, the deep pain that parents feel at this time, like all pain, is necessary; it helps to prompt those parents into action. Just as the function of the sharp pain of a burn is to trigger a fast motion to save the burnt member from the heat, so the all-engrossing distress felt by parents of a sub-normal baby has as its function a radical change in attitude of the parents, who must abandon the usual attitude of parents. Parents who were planning to watch, admire, and assist the development of their child must now abandon that attitude, and assume one which is aggressively active. They must now become parents of a very different sort, and develop all kinds of talents they might never have realized they possessed.

These parents, from all walks of life, are required to mature in ways they never imagined, and overcome the existential hurdle of dealing with a frightening and emotional situation for which they were not prepared—and which will not “go away.” These young parents are required to learn the latest in neurological terms, in forms of treatment, and in how to deal with the psychological difficulties that will face them. They must be prepared to address the emotional difficulties that will arise within their own lives, in their marriages, among the siblings of the impaired child, and even among their neighbors.

Until recently, neurological impairment, like illness and premature death, was considered an inevitable problem: something that just had to be accepted as part of nature’s way. In recent years, while so many illnesses have been eliminated and early deaths have become comparatively rare, neurological impairment has remained in which medical advances have been comparatively slow. This type of affliction has, to a great extent, continued to be considered as something that simply must be accepted, as a manifestation of God’s will.

However, as I think of the actions and words of our Lord, it seems evident to me that his wish is to see all children made whole. Their afflictions are allowed by our heavenly father in order to give him glory. So let me offer a few reflections about the glory that can be seen surrounding these children when they and their parents have the opportunity to confront the situation with hope. I trust that readers will understand, and if necessary forgive, a mother’s ardor and passion.

Limited options

When our little boy was born blind, deaf, unable to suck, and totally flaccid, we were—as most parents would be—completely unprepared and subject to the most intense distress. Our trust in the goodness of God and respect for his laws of nature were the only mitigating elements in the sadness of seeing our beautiful, adorable baby start out his little life in so much difficulty and danger.

Like many other parents, we went through batteries of tests, imagining that medicine could somehow help our child. After a year—during which Leopoldo did not grow or improve in any way, but instead became subject to continuous and severe convulsions—we realized that conventional medicine and therapy had very little to offer children such as ours. The specialists to whom we brought him, who included some of the most highly regarded physicians in the world, could offer no hope for him except the grace of an early death.

At this point we decided to try a program of home treatment for Leopoldo. The program demanded a lot of work from us—8 or 10 hours a day—but it had as its goal the tangible rehabilitation of our child through the very laws of nature for which my husband and I have so much respect. As our child had been evaluated, we had also been instructed in the basic tenets of brain plasticity, growth, and function. We had come to understand that the brain grows by use, and that the best way to give our baby function was to reach his brain through the senses, rather than trying to restore function to each member.

Rather than describing this program in detail, let me proceed straight to the implications we are convinced that it has for countless families.

Around the world there are millions of children who suffer from brain dysfunction. Their problems span a wide spectrum—from total incapacity, as in the case of our Leopoldo, to mild dyslexia—and include genetic disorders such as Down’s syndrome. Two important realities should be borne in mind here:

First, on a worldwide basis, the vast majority of these children have no possibility of receiving effective therapy. Therapy is expensive and should be done daily. Even in those relatively affluent societies where good public service is available, the task of arranging daily transportation to and from the treatment centers will present daunting practical difficulties, not to mention the financial obstacles.

Second, a mild dysfunction which is left untreated can be a more serious tragedy than profound damage. Mildly handicapped individuals are people who frequently cannot manage in school or in life; they are often mistreated, and can easily be exploited for delinquency or prostitution.

For the privileged few families who have the necessary resources, there are therapies and special educational programs which can be quite effective in the less severe cases; for the more profoundly impaired child, institutionalization is another option. But for the poor, and for those who live in less developed societies, there are no such solutions. Those parents are restricted to the diagnostic services offered by the public hospitals, and the surgery and perhaps the limited therapy offered by charitable centers, if such facilities exist in their neighborhoods. (I say this not as a criticism, but as a realistic appraisal of the resources that are available—in spite of the expense, good will, and effort so many people expend.)

Leopoldo’s story

Our decision to undertake the home program to rehabilitate our little 1-year-old profoundly changed our lives. The first effect was to catapult us into a different state of mind. In place of the constant, nagging worry as to what further bad news might await us, we absorbed the fascinating knowledge of what goes on inside the child’s brain and how we could effect positive changes.

Our first program consisted of a great deal of tactile stimulation, taking our child through the fetal movements which, the doctors suspected, he had not made while he was in the womb. We were told how to construct a “vital stimulation device”—a table equipped with a 200-watt light bulb and a car horn. When Leopoldo was placed on this table—for 1 minute, 18 times per day—we would activate the sound and light intermittently. Leopoldo seemed totally unaware of the tremendous noise which was produced; he kept on sleeping. After one week of this, and all the other stimulation of his senses, he appeared to be starting to open his eyes a little when he was placed on this device. On the 10th day, he jumped when we turned it on. We now had proof—exhilarating proof—that the neurons, if stimulated, would develop sufficiently to appropriately respond to the stimulation.

It is impossible to describe the change in our household, or the feelings of liberation and joy which overwhelmed all of us, when we realized that he could be made aware of us, and could actually improve—and do so fairly quickly—contrary to what all that the specialists had told us. It was thrilling for us parents and for his six brothers and sisters to see that we, through our love, our time, and our efforts, could be helpful to him. And it was thrilling, too, to recognize that helping him was our responsibility. Our role was the primary one; as parents we were not limited by what the doctors said or thought.

Mission accomplished

Of course the joy we felt was not only the joy of discovering that our inert little bundle was truly alive, with all the energies which nature had bestowed through his DNA. We also made the wonderful discovery that God’s system for the growth of human beings is inextricably bound up with the love which parents must give their children. We realized, by analogy, to what a degree love actually makes children grow: an essential theological truth about our relationship with God. We were able to observe and measure the awesome truth that each cell knows its destiny. Leopoldo began to grow and grow, to catch up to the size he was supposed to be.

As his mother, I would be delighted to recount every one of Leopoldo’s enormous changes, but this is not the proper place. Suffice it to say that within several months his hearing became excellent. He began to see during the first year, staring with a pupil reflex. It took nearly two years for him to actually focus, and then we started tracking exercises. Teaching our blind baby to see has to have been the most thrilling experience of our lives. In fact, every day there was some small advance, and in spite of the convulsions and the medication, we did not have a chance to become discouraged in our efforts, nor to flag in our 8-hour dedication to the therapy every day.

As we did our best to imitate, in an exaggerated way, the natural processes a baby goes through in order to develop, we were able to glimpse God’s methods for human development to appreciate and admire them. The method, and the philosophy that lies behind it, is relatively simple. It is a philosophy of trust in the potential that lies inside each person—a philosophy of respect, of faith, of hope, and particularly of love. That philosophy was not only effective in stimulating Leopoldo’s development; it also brought all of us closer together as a family, and closer to God.

Leopoldo continued to improve, to the point where it became obvious that he had arrived at the fullness of his potential. He was a central and very conscious part of our household, very aware of our love for him and his love for us. He learned to crawl and to say certain words, but seemingly he could not advance past that stage. The damage had been too great, and the years of seizures had caused further damage, even as we made progress. At 14 our Leopoldo’s heart suddenly stopped. His mission here had come to an end and his mission in heaven was due to begin.

Sharing the blessings

Our experience with Leopoldo opened our eyes to an enormous unmet need. We decided to try to bring to families in need the same blessings which Leopoldo and our experience with him had brought to us. We approached Charles Solis—who had been our instructor for many years, helping us to understand and to carry out the program of therapy for our son—and proposed that we do an experiment in Venezuela as part of the activities of our pro-life organization, Provive.

He accepted our offer, and we started with 30 children from poor areas of Venezuela in which Provive was already active. These 30 children were from a large variety of conditions; they were purposely chosen for their diversity. They came from urban, provincial, and rural settings. We made evaluations, designed home programs for each family, and asked them to come back in six months. The improvements during that time period, in all but two cases, were wonderful. As the children continued to improve, we began to receive hundreds of requests from other families who wanted to be given their own programs.

At this point it became obvious that poor families are completely competent to perform the rehabilitation of their own children, and the only question was how to reach all those who need it. We were so blessed as to be joined at that point by Petty Peraza de Colmenares, the president of the Venezuelan Association of Therapists. This remarkable lady organized a group of 30 therapists who were interested in learning the new methods used in this program. Charles Solis set up a 100-hour course, which has now been repeated in each of the past three years for new groups of therapists, who in turn are offering the program in centers, both public and private, in many parts of Venezuela, with the same extraordinary success. The program, which we have called the Leopoldo Program, is a method which has come into its own.

Thanks to the latest technological advances, under our greater understanding of brain plasticity, we can now explain why this method is effective. The understanding of brain plasticity also helps to explain a great deal about the adaptability of human beings. During the first six years or so of human life, the brain is literally shaped by the exposure it experiences. Primitive peoples, living in the widest variety of situations, can learn to adapt and become proficient in the most extraordinarily diverse activities. We now know that their successful adaptation reflects the fact that their brains grow in the ways that are demanded of them when they are small. By the same token, children who are deprived of stimulation will show retardation.

Brain plasticity—this fact that the brain grows because of stimulation—is the reason why a child with cerebral deficiency can recuperate a great deal, and frequently gain many if not all normal functions, if the therapy program is started soon enough. The best years for therapy are the first few years after birth, although surprising improvement has been shown to be possible in older children.

It has also been shown that the effectiveness of parents has nothing to do with their level of education; they are limited only by their capacity to love and to work with their children. This program can work anywhere, and our goal is to make it available everywhere. Our objective is to convey to all parents the hope and the confidence that this know-how can bring. We are dedicated to dispelling the nightmare—the fears of the unknown, the feelings of being punished, the confusion—which this problem visits upon young parents.

We also hope, through this program, to proclaim the glory of God’s gift of life while demonstrating the extraordinary capacity of the young brain to overcome its limitations. And we hope to illustrate the evangelical paradox as the “least of his little ones” show the transformation which is possible where love is strong and the conviction of the inherent dignity of each and every one is made manifest through the sacrifice of family members.

Christine Vollmer is a founding member of the Pontifical Academy for Life and president of the Latin American Alliance for the Family. Readers interested in the program she describes in this Essay may contact Charles Solis at the REACH Institute for Families, P.O. Box 3507, Ashland, OR 97520.

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