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He opened his eyes and smiled; a father's story of early intervention and stimulation.

He Opened his Eyes and Smiled

Five years ago, our son was born extremely premature and weighing less than two pounds. Because he was barely 24 weeks old, his prognosis was grave. During the weeks, which turned into months, that he spent in the hospital, we wondered many nights if he would be alive the next day. When the phone would ring, the fear that it might be the hospital with bad news was ever present.

The doctor offered us little in the way of hope that he would live. When it appeared later that he might live, they offered even less hope that he might be normal. They added that even if through some miracle he did survive, he would never walk and probably be blind, severely retarded and a host of other things. Often I watched him in the hospital and wondered if he even knew I was there. He had so many tubes and machines hooked up to him that it was often difficult to separate the machines from the tiny piece of flesh that was our child.

For weeks there were no signs of consciousness, just a lump of flesh moving to the crazy rhythms of the respirator as it pumped air into two tiny lungs. One Sunday our older child and my wife had sore throats, and the duty of making the hospital visit fell on me. I made the long trip to the hospital in deep anticipation. When I arrived in the parking lot, I panicked, wondering what I would do once I arrived at his bedside.

SOMETHING HAPPENED

We had been taught to stimulate him by exercising his legs and moving his arms. Until now, I had never had to perform these tasks alone. My wife had always taken the lead. Today I was responsible for them alone. Sometimes I would wonder if it made any difference; he was always unresponsive. I entered the hospital and took the elevator to the third floor. I walked inside the ward, rolled my sleeves up at the sink and began scrubbing my hands and arms. I finished and walked over to his little bed. I looked down at him, almost hidden by the mass of tubes and other machines keeping him alive, or was he alive? I did not know where to start with the exercises. I was very uncomfortable.

Then something happened, which to this day remains a source of wonder to me. As I stood frightened and feeling totally inadequate before this. underdeveloped, barely alive baby, he opened his eyes and smiled. Many people have analyzed this event. Most dismissed it as simple muscle contraction; others say it was not unusual, but they forget the timing and cannot understand the moment. At this instant I realized that this child was indeed a living soul. He was small, sick and weak but nevertheless a part of the great body of human spirit. I completed the exercises and left the hospital feeling that deep inside there were some things in this world that were complex beyond my capacity of understanding. I arrived home and shared the news with my family. I think that it was at this point that we began to search for the humanity in this premature child.

For the next few weeks, we taped music, all kinds from classical to gospel, and purchased a tiny tape recorder to place in his little bed. The nurses would play it for him during their shifts. We began to read to our son. At first we taped books and nursery rhymes and had them played for him in the hospital. To make the tapes interesting, we added some popular music that the nurses who were working with our son, most of whom were young, enjoyed. It was our belief that if we could find an interesting enough mix, we could gain more of the nurses' time for our son, or at least give him a good chance of getting his share.

Making those tapes took hours. We sang songs, read nursery rhymes and recorded every sound that we could find to introduce him to the sounds of the world. They included birds, thunder, water and anything else we could find to tape.

For the two and a half months that he remained in the hospital, we constantly searched for sounds to tape, pictures of family members, toys, noise makers and anything else that was suggested or that we thought the hospital staff would tolerate. In spite of all our efforts, there were times that I would stand beside his little bed and touch his poorly shaped head--pressed to one side because he was forced to lie in one spot so long--and wonder if it weren't all pointless. The doctors did not offer much encouragement. They would never even say that he might someday go home or that one day we might be able to unhook him from those machines. Yet we knew that should he live, we had to give him every chance.

WHEN OUR SON CAME HOME

For the first week or so after we finally brought our son home, we had to feed him every two hours. He had a great deal of difficulty learning to suck on a nipple, so we had to coax him and keep a record of how much he ate at each feeding. It was a race against time; could we get enough food into him to keep him from losing weight and having to go back to the hospital? Within each of those two hours, we had to find time for mental stimulation. Somehow, between his mother and I, we managed to avoid complete exhaustion. Complicating the matter was the fact that we both worked. But by this time we owed so much money that we could not even consider giving up one income.

We recognized that the probability of mental retardation loomed very large because of all of the complications of keeping him alive. But a few months after our son came home, we ran into another obstacle: he could only effectively see about 12 inches. While he was in the hospital to have a double hernia operation, his eyes were examined. We were told that he was going completely blind.

Stimulation was the order of each day. It was madness, making any kind of noise, just to keep his mind occupied. We bought toys of all kinds, colors, shapes and textures; he ignored them. Panicked, we confronted him with household objects: aluminum foil, wrappers, boxes, cans, everything available. He loved it. Finally we had found an avenue to his mind. When he began to show a preference for some things, it became obvious that he simply was not interested in children's things. He wanted to be involved with the things that his parents used, utensils, pots, pans, cans, bottles, food containers and cereal boxes.

We had been told he would never have useful vision. We were advised to develop his other senses. His mother worried about it, I ignored it, and together we continued to bombard his senses with every conceivable form of stimulation. We bought mobiles -- he ignored them; they were children's things. We held onto hope that somehow if we could make him use the small amount of vision that he had, perhaps somehow things would get better. We would sit in front of the television and tell him what was on the screen. Sometimes the whole thing seemed to be hopeless. Yet I knew that there had been severe damage to the retina because of the extended time that our sonhad received oxygen.

Slowly he began to respond to the television images. At first he only responded to the movements on the screen, then he began to prefer programs. He began with an interest almost exclusively in commercials because they were louder and contained varying and stimulating images. This was disturbing to his "teacher" parents because educationally it was non-productive. Then we found that the Cable News Network used a format similar to commercials: a rapid fire, visually rich, constantly changing image. We tried it on our son, and he caught the bug. It became his favorite program.

There were those who criticized us severely for letting him watch television as often as we did. It was also a concern of ours. Yet we knew by the end of his first year, with the extent of our son's involvement with cerebral palsy, he would need all kinds of stimulation to motivate his mental process. We accepted, when he was a year old and could not sit, stand or crawl, that he was going to be physically handicapped, but his mental strength could and would not be ignored.

This concept has resulted in the displeasure of his therapists and providers who choose to attend only to his deficiencies and ignore his average intellect until later. Of course, he is not their child, and they do not have to try to plan for his future or worry about the "use it or lose it" law of nature.

STRENGTHS RATHER THAN WEAKNESSES

We began to build on his strengths rather than only on his weaknesses. We began to read everything that we could get our hands on concerning mental growth, retardation, etc. It appeared that there was a relationship between mental growth and early involvement. We read and read, sometimes a dozen books at a time.

At first there was no evidence that any of this intervention made any difference. His vision was so poor that we could not be certain what he actually saw. We needed some indication that all of our hours of work were making a difference. In one moment of deep concern I decided to see if he could learn just one thing. I decided to see if he could learn to spit when told. For a while that day we practiced spitting. After an hour or so I realized that he understood the concept, but because of his motor problems, he was having difficulty carrying out the action. The next day he caught on, and we spent the next week trying to break him of the habit!

At four years of age he recognized many words and showed evidence of sounding out words to pronounce them. He also chose what he wanted to watch on television and changed the channels to locate the desired program. At this point, much of his stimulation came from the use of the family's personal computer. He took over the computer, playing nursery rhyme games. He could locate and type any number or letter on the keyboard to give simple commands.

In the spring of 1988, after spending three years in the pre-school program in our school system, we realized that the time for Mark to attend kindergarten was approaching. We were very apprehensive about the type of program that would best benefit him. Although both my wife and I are educators, we knew little about special education. First we ordered books on the special education process. I began reading and taking notes. We decided upon the recommendation of Mark's pediatrician, who has been one of his strongest advocates, to have him tested independently. We hired an outside consultant and his test results turned out remarkably similar to the school system's. After many meetings with the special education department and our independent consultant, we found an educational program that we could agree upon. Even though some of these meetings were not the most congenial of atmospheres, we learned to respect each other.

Mark has been enrolled in a "regular" kindergarten program since September. He continues to have severe motor problems and uses a wheelchair. Consequently, the school system provides him with a full-time aide and a computer. He is now able to type short stories on his computer. The other children in his class appear to accept him, and he enjoys going to school. He is becoming a rather social individual, and his verbal skills are expanding rapidly, some of which is attributed to his mainstreaming. Much of his apparent success in school is due to a caring and dedicated kindergarten teacher and her aide. They prepared the members of his class properly and helped them to understand their new classmate with a disability.

Today our son is progressing remarkably well in school. Five years ago, when we brought him home from the hospital, we had two choices. We could accept things as they were and take a "wait and see" attitude about the severity of his disability, or we could commit ourselves to making the best of a difficult situation by building on our strengths. We decided upon the latter course of action. Although we cannot say with absolute certainty that his present success is due entirely to our early intervention, it is our belief that making that choice has made the difference in our son's future.

PHOTO : Mark learned to read by asking questions about the words on cereal boxes and food cans.

PHOTO : Mark and his dad work on the computer, a source of early stimulation that continues to be an important learning tool.

PHOTO : Harrison A. Dixon is a vocational teacher at Gloucester High School in Virginia. He also serves on the Special Education Parent Advisory Committee and is a Sunday School teacher at his church. Dixon lives in Hayes, Va. with his wife, Sylvia, who also teaches in the Gloucester school system, and his two children, Revetta, ten, and Mark, five.
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Title Annotation:physically and mentally handicapped child
Author:Dixon, Harrison A.
Publication:The Exceptional Parent
Date:Jan 1, 1989
Words:2250
Next Article:The many faces of early intervention.
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