When my son Roycito George Ferguson was born in 1959, my first thought was for him to someday be President of the United States. Little did my husband and I realize the challenges, sadness, fears, tears, disappointments and, above all, isolation that we were to face later on.
Whenever I took the baby to his medical appointments, I made it a point to discuss my concerns to the doctor that he wasn’t doing what he should for his age. To my concerns, she would say, “give the baby time.”
Thirteen months after he was born we had a little girl. By that time, our son still could not sit alone or walk. I would prop him up with pillows for him to remain seated. He would take just a few steps only if one of us held both of his arms. Our doctor finally began to recognize that we needed to see a specialist. By that time, he was already two years old.
The doctor made an appointment for us to take our son to be seen at a children’s hospital in St. Louis, which made us hopeful that we would find an answer. However, our hopes and dreams were shattered. The first thing the doctor did was to perform an electro encephalogram, sticking tiny needles into his little scalp, while we watched in horror and tried to calm him down. After the ordeal was over, in a very blunt manner he gave us his diagnosis. “Your son is mentally retarded.” We asked what that meant. His cold answer was, “He may walk, or he may never walk. He may talk, or he may never talk". He gave us absolutely no hope. The news was beyond devastating. We felt we were the only parents in the entire universe facing such grim diagnosis.
As we walked towards the parking lot, the cracks in the pavement made me wish the ground would open up and swallow us down into the pits of the earth, where perhaps this terrible pain could be taken away. We felt so terribly alone. We had questions but where could we turn to? Was God punishing us, and why? Could the doctor be wrong? Surely, we could find an answer somewhere, but where?
We both struggled to accept that our precious little boy had a disability. Neither one of us had been around disabilities. Back in those days, people with disabilities were hidden away. Perhaps because there was no one to turn to for advice or support. It was a problem to deal with all alone.
We bought educational toys, but he showed no interest. He looked at children from a distance showing no interest to interact with them. Observing other children of his same age became very painful because it made us realize how far behind he was. There was not support for us, or more importantly for him.
In the summer of 1965, our third child arrived. Although our son was making progress, his frustrations and constant screaming were taking a toll on my nerves. As I was struggling to help our son, it was obvious the new baby showed developmental delays. This took a toll on me and eventually caused a nervous breakdown. For a period of time, I had to be away from family in order to receive treatment.
Our son and the youngest daughter were among the first children to be evaluated at the Diagnostic Clinic in Rolla in the summer of 1968. We were told to let the “professionals” determine what was best. Their advice was for us to place our son in an institution and our little girl in a nursery school, plus speech therapy. I was very angry at the so-called “professionals” telling us we had to pull our son away from our family when he was just 9 years old.
Still, we didn’t know what other option we had. We embarked on the painful journey of visiting places for our little son who had no idea what was coming. We finally made the heart-wrenching decision of which place we thought would be best for him. It was an early fall day when we took our son to Columbia. The day turned out to be one of saddest days of our lives. As we left him, he kept calling “mommy, mommy." As we walked away we were told not to look back and not to have contact with him until Christmas. For a long time following that day, I kept hearing his crying. My heart ached!
When we brought him home for Christmas he seemed very subdued and we noticed he hardly smiled anymore. We kept in contact with him via mail, phone calls, periodic visits to Columbia,Mo and extended home visits. Gradually he began to accept his new way of life.
He attended school at this campus until he was 18 years old. His teacher mentioned he exhibited autistic tendencies. In a way, the word Autistic sounded better than Mentally Retarded. The teacher assured us he was learning basic reading and writing skills in school. He preferred to be isolated from the rest of the class. He enjoyed drawing, doing puzzles and most of all music and watching television.
Whenever he was home, his behaviors were difficult to deal with. He could become easily upset, screaming and stomping his feet and biting his hand so hard it left scars. He had nightmares. He seldom smiled and had a worried look. When we made the trips to Columbia, he was always very quiet and sad.
Not having much support, we were at a loss as to what to do. Back in those days we did not have much information as how parents could advocate for their children and what our rights were. We were afraid and intimidated by the system.
When Roy was around 37, Woodhaven, the facility he lived in, was closing its campus and moving all of its residents out into the community. We had to move him. After the move we made a couple of unannounced visits, as we had our doubts about the care he would receive. Our concerns were immediately confirmed. Our son was in a very, very bad environment. We realized then that it was imperative to bring him closer to us. After 27 years he would be close to us and we would be able to monitor his care.
On a cold January morning in 1996 we moved him from Columbia to Springfield. When he moved to Springfield, he did not know how to live outside of an institution. We never imagined the effect this change was going to have on our son or on us. We thought he would be happy to be close to us, but instead it turned into a real nightmare. He showed distrust towards everyone including us. He refused to come to our house. When we visited his home, he would slam the door on us or throw things at us. He refused to come out of his room, and kept the door to his room closed. We were not only concerned but sad to see this type of behavior and began to blame ourselves for uprooting him from the area he had been accustomed to those long 27 years.
After many years of total frustration, finally someone came into his life who knew how to deal with his behaviors. This person worked in the field of Autism and knew how to deal with my son’s problems. She was instrumental in understanding and teaching Roy, and continues to be a part of his daily life. He went through some difficult weeks, but eventually started making gradual progress. These practices made him a totally different person.
It is very sad that throughout those 27 years our son resided in an institution and no one found a solution to help him. His life there had no predictability. His living arrangements were with people who had behavior disorders making it more difficult for him to cope. In a way he was “warehoused”.
Today, he is happy to live in his own apartment. He often says: “I do not want to go back to that institution”. We have to constantly assure him that that institution's doors closed for good and that his home now is in Springfield. He likes to carry his own keys to his apartment and lock the door as he leaves. He makes his own bed and does his laundry. Roy takes great pride in his possessions and his home, and is diligent at making sure everything is in its proper place.
Roy is very caring and concerned about people, whether they are sick, hurt, or are crying. He will try to bring a tissue or a glass of water to make the person feel better. If he gives candy or treats, he is always very willing to share, he has good manners and often says please and thank you. He bends his head down to be kissed.
He is a teaser. When I call him Mr. Roy he calls me Mr. Mom. His vocabulary has improved and has become very talkative, allowing him to better express his feelings. Today, he keeps a smile on his face most of the time. He still says he is 9 years old, and we think it is because he was that age when he went to the institution and it left such an impression in his mind.
He is living in a world that gives him choices. He is free to listen to his radio. Music is very important to him. He enjoys watching his favorite programs on television. He can call home whenever he wants to and if something is not working he knows I will find a solution. He enjoys checking out five books from the library every week. His favorites are Dr. Seuss books, Charlie Brown, Garfield, Big Red Dog, and others.
I am very proud of my son. He has worked very hard to become the person that he is today. He did not do it alone. Through the efforts of someone who knew how to help him, it has been possible for him to be a happier and less frustrated person. My son has a permanent disability which will never go away. The quality of his life has improved 100%. Our faith in God helped us through the dark moments when we felt so helpless and alone. The world of disabilities will always be with us, but luckily through the efforts of so many people, improvements have been made. Today I am happy to say he is 57 years old and is still learning new things.
It is my genuine desire that whoever reads the story of my son, will find encouragement and realize that there is always hope. There truly is “a light at the end of the tunnel”.
Ligia and Roy's Story Brought to you by
Abilities First believes that by ensuring that people have opportunities to use their abilities, we can make our community better for everyone. Abilities First uses public and private funds to support the choices of individuals with developmental disabilities in Greene County to live, work, play, be active, and productive in meaningful ways for our community. For more information about Abilities First and its programs, go to www.abilitiesfirst.net or call 417-886-0404.
Abilities First operates programs which support and create community opportunities including support coordination for people with developmental disabilities of all ages through First Steps (birth – 3 years) and The Next Step (3 years – over). Art Inspired Academy provides an inclusive experience for people with and without disabilities to participate in creative arts like theater, music, dance, and art. Abilities First has two retail businesses: Inspired Boutique is an upscale resale shop featuring women’s clothing, accessories, furniture, and antiques, and Art Inspired, a retail store and gallery highlighting furniture and home décor items created from recycled paper and artwork from visiting artists and Academy students. Both stores offer competitive job opportunities in inclusive work environment.