A Story of Hope for Parents with Children with Developmental Disabilities

This is the text of a talk given at the Family and Life congress at the Vatican in 1997.

I would like to speak to you today as the mother of a child with neurological impairment. I will endeavor to express something of the profound existential shock resulting from the birth of such a child and of the enormous blessings which can result from the acceptance of what at first could seem an insurmountable misfortune.

The greatest fear, deep in the hearts of young parents, is that their child could be born with some kind of impairment, that is, 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 is meeting his milestones on time, or before he should.  I do not believe that this is a result of an overemphasis on brains and achievement but that this 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, as our Leopoldo was, with damage to the brain due to perinatal trauma, genetic causes, or from infection or deficiency in the course of the pregnancy, it hits the parents as the most profound and terrific tragedy which can occur. Most young parents manage to hide their utter grief with great courage, and their anguish is concealed beneath the activities the baby demands: tests, examinations, therapy, etc. Others deal with their distress by excessive hope, and imagining that their baby will “grow out of it”.

But in fact the deep pain felt at this time, like all pain, is necessary to prompt these parents to 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 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, who watch, admire and assist the development of their child, and instead assume one which is aggressively pro-active. They must at this point become very different, and develop all kinds of talents they were quite unaware of.

These parents, from all walks of life, are at that point required to mature in ways they never imagined, and overcome the existential hurdle of dealing with a frightening and emotional situation for which they are not prepared and which will not “go away.” Thus young parents are required to learn the latest in neurological terms, forms of treatment, and how to deal with the psychological difficulties within themselves, within their marriage, among the siblings, and even arising among their neighbors.

Until recently, neurological impairment, like illness and premature death, was considered an inevitable problem that had to be accepted as part of nature’s ways.  In recent years, as many illnesses have been eliminated and early death made comparatively rare, neurological impairment has remained a field which has not advanced comparably and this type of affliction has frequently continued to be considered God’s will and simply to be accepted.

However, remembering the actions and words of Our Lord, it seems evident to me that His wish is to see all children made whole and that their afflictions are allowed by our Heavenly Father in order to “give Him glory.”  It is about the glory which can be seen surrounding these children when they and their parents have the opportunity to confront the situation with hope that I would like to speak today and I trust that you will forgive what could perhaps seem like undue ardor and passion.

When our little boy was born blind, deaf, unable to suck and totally flaccid, we were, like most parents, 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 child and adorable baby start his little life with so much difficulty and danger.

Like many other parents, we went through batteries of tests, imagining that medicine could somehow help him. 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 and that the specialists which we had seen, some of the most highly regarded in the world, had no hope for him except an early death.

At this point we decided to try a home program which promised us a lot of work – eight or ten hours a day – but which 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. When our child was evaluated, we were also instructed in the basic tenets of brain plasticity, growth and function. Thus we understood that the brain grows by use and that the best way to give him function was to reach his brain through the senses, rather than trying to give function to each member.

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Charles Solis of the Reach Family Institute can explain and supply this treatment, so I will go straight to the implication that we are convinced that it has for countless families.

In the world there are millions of children who suffer from brain dysfunction, spanning a wide spectrum from total incapacity, like our Leopoldo, to mild dyslexia, and this includes genetic disorders such as Downs Syndrome. Two things should be borne in mind here. One is that the vast majority of these children have no possibility of receiving effective therapy. Therapy is expensive and should be daily. Even in those privileged places where good public service is available, daily transportation presents practical difficulties, as well as financial obstacles. The other important point is that untreated mild dysfunction can be more serious a tragedy than profound damage. These mildly handicapped individuals are people who frequently cannot manage in school or in life, are often mistreated and can easily be used for delinquency or prostitution.

Thus, for the few there exist therapies and special education which can be quite effective in less severe cases, and institutionalization of the more profound. But for the urban or rural poor there are no such solutions and the parents of these are restricted to the diagnostic services offered by the public hospitals, and the surgery and limited therapy offered by charitable centers (where they exist). This is not a criticism, but a realistic appraisal of what is there, in spite of the generosity, goodwill, and effort of many.

Our decision to undertake the home program to rehabilitate our little one-year-old profoundly changed our lives. The first effect was
to catapult us into a different state of mind, where the constant, nagging worry as to what further bad news awaited us, was substituted by the fascinating knowledge of what goes on in the brain and how we could affect positive changes in it.

Our first program consisted of much tactile stimulation and taking him through the fetal movements which it was suspected he had not made. We were instructed to construct a “vital stimulation device” which was a table equipped with a 200 watt bulb and the klaxon of a car. When Leopoldo was placed on this table, for one minute, eighteen times a day, we would activate the sound and light intermittently. Leopoldo seemed totally unaware of the tremendous noise which was produced, but 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 on this device. On the 10
th day, he jumped when we turned it on. We now had proof, very, very joyous 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 invaded all of us when we realized that he could be made aware of us, and could actually improve, and quickly, contrary to all that the specialists had told us.  It was thrilling for us parents and the six brothers and sisters to see that we, our love, our time and our efforts could be helpful to him, that he was our responsibility to help, and that our role was the primary one and not limited by what the doctors said or thought.

Of course, ours was not only the joy of discovering that our inert little bundle was truly alive, with all the energies which nature had bestowed in his DNA, but it was also 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 found out, by analogy, to what a degree love makes children grow. We were able to watch and measure the awesome fact that each cell knows what is its destiny, as Leopoldo began to grow and grow, to catch up to the size he was supposed to be.

I would be delighted to recount to you the steps of Leopoldo’s enormous changes, but there is no time. Suffice it to say that within several months his hearing became excellent, and that he began to see during the first year, starting 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 flag in our 8-hour per day work.

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 development and to begin to appreciate and admire them. The method and what is behind it: the philosophy of trust in the potential inside each person, which is a philosophy of respect, of faith, of hope and particularly of love, was not only effective in regard to Leopoldo’s development, but brought all of us closer together and closer to God.

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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 wreaked further damage, even as we made progress. At age 14, our Leopoldo’s heart suddenly stopped. His mission here had come to an end and his mission in Heaven was due to begin.

Our experience with Leopoldo opened our eyes to an enormous unmet need. And we decided to try to bring to families in need the blessings which he and the program had brought to us. We approached Charles Solis, who had been our instructor for many years, and proposed that we do an experiment in Venezuela as part of the activities of our Prolife organization, PROVIVE.

He accepted, and we started with 30 children from poor areas where PROVIVE is active. These 30 children were from a large variety of conditions, purposely chosen for their diversity. They came from urban, provincial and rural settings. We made evaluations, designed home programs for each and asked them to come back in six months. The improvements in all but two at the end of six months were wonderful. As they continued to improve, we began to receive hundreds of requests from other families who wanted to be given programs.

At this point it became obvious that poor families are completely competent to perform the rehabilitation of their 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 interested in learning the new methods used by this program. Charles Solis set up a course of 100 hours, which has been repeated 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. The recent proof, thanks to the latest technology, of brain plasticity, has explained why this method is effective. It also explains a great deal about the adaptability of human beings. The brain is formed in the first six years or so, by the exposure it experiences. Primitive peoples, living in the widest variety of situations, learn to adapt and become proficient in extraordinarily diverse activities. We now know that this is because their brains grow in the ways that are demanded of them when small. By the same token, children who are deprived of stimulation will show retardation.

Brain plasticity, the fact that the brain grows because of stimulation, is the reason why a child with cerebral deficiency can recuperate a great many, and frequently all, functions, if the program is started sufficiently soon. The best years are the first ones, 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, but only with their capacity to love and to work with their child. 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. It is to dispel the nightmare of fear of the unknown and the feeling of punishment and confusion which this particular problem visits upon young parents.

We also aim 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 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 their family members.