Parental Perspectives Related to Transition:
From School to Job/Residential Placement
by Jacqueline M. Ransdell;
Human Services Professional and Parent of a Son with Disabilities;
Raleigh, North Carolina; Winter 1988
Hair of gold
Eyes of blue
Twinkling bright
An azure hue.
Smile so sweet
Rosy cheeks
Joy of joys
Mama's got
Her baby boy!"
Introduction
Our Jeff was born on May 26, 1969. After fully expecting a baby boy some 4½ years earlier when our daughter, Jennifer, was born, we rejoiced at the birth of our son. So thrilled was I that I wrote the above poem to "celebrate" his birth! Little did I know then that our precious son was mentally retarded.
As a professional in the mental health field, I soon recognized that his developmental milestones lagged far behind what they should have been. Jeff seldom cried. He didn't smile until way past the usual time. His sitting up, his crawling and his walking were way behind the norm. His pediatrician never suspected that he might not be "normal" or "average." He was a boy, she said, and boys were slower than girls. He would catch up, she said. But I felt something was wrong. Mothers seem to have a sixth sense about their children.
At the age of two years, ten months Jeff was diagnosed as being "borderline trainable" or "educable mentally retarded." I was not really surprised although my heart was breaking. I knew I had to hold myself together for my husband, Ernie, who was shocked and devastated at the thought of the long-term implications of this for Jeff.
Both of us knew that we couldn't waste a minute feeling sorry for ourselves or for Jeff, either, for that matter. We knew nothing we could do could change the fact that Jeff was mentally retarded and that he would be as long as he lived. We also knew that although mental retardation can never be "cured," persons who are mentally retarded can be helped to become contributing, productive citizens if they receive help early.
Knowing the importance of early intervention, we immediately went to work trying to locate resources to help Jeff. There were few resources as compared to the present time. We enrolled Jeff in a preschool program for children who are mentally retarded. He remained there several years. (He was just barely three when he entered that program.) From there we were encouraged by his attending a program where the staff believed in mainstreaming. This program served "normal" or "average" children together with children who had physical and/or mental handicaps. Jeff later attended a third preschool with a more highly structured program which we thought he needed at that point in time.
Throughout Jeff's preschool years he was tested and treated for behavioral problems, a seizure disorder and numerous dental problems. It seemed like we were forever in the office of a doctor, psychologist, dentist, or family counselor. Our whole lives, and the life of our daughter, revolved around Jeff. (I must add here that all along the way we have received much needed support of all kinds from many dedicated professionals to whom we will remain forever grateful.)
Things were different in those days prior to P.L. 94-142, the Education for all Handicapped Children Act. Prior to the enactment of this federal legislation, the states did not have to provide an education for their children who were mentally retarded or physically handicapped. This was the main reason that Jeff did not enter public school until the age of nine. We were forced to pay for his education in private programs.
Jeff was blessed always with dedicated, conscientious teachers, who sometimes have not had the support of principals or administrators in the public school system. Now 19 years old, Jeff is in his next-to-last year in high school and faces the working world.
The Period of Transition: Hope and Concerns
And so, a new chapter in Jeff's life is about to unfold, a chapter which is full of questions, concerns and anxieties. We are now in a period of transition from school to job and a new home for Jeff in the community. I say "we" because it is a time of transition for Ernie and me, too, as well as for Jeff. We know we're going to have to let him go.
In talking about this period of transition, Ernie and I have reflected upon what we could, and should, have done to better prepare all of us for this time. We discussed the fact that we should have made Jeff develop a sense of independence much earlier in life and that we should have insisted upon his doing more for himself all along. True, it's a lot easier to do things ourselves, particularly if we're not blessed with much patience! But in the long run, it's so much better for our sons and daughters if we, for example, encourage them to help as much as possible around the house, teach them to ride the bus and give them opportunities to select and purchase groceries.
In addition, Ernie and I would have been more vocal in urging public school administrators to be more supportive of special education teachers in their efforts to provide creative learning opportunities for their students outside the classroom -- opportunities like vocational training and job training in the community. This is so important in helping young people like Jeff get ready to make the big step from school to work.
In thinking about Jeff's future, I have ambivalent feelings. On the one hand, I am thrilled at his about-to-be experienced life in the working world because it is what we, as "normal" people, experienced at his age. If anyone had told me ten or twelve years ago, when the #1 goal for Jeff was "to sit in a chair for 60 seconds," that he would one day be capable of competitive employment I would have said, "hog wash!" Why Jeff couldn't even sit through a short television commercial! Yes, he's come a long way, baby!
On the other hand, I dread Jeff's leaving his safe secure "cocoon" in the classroom and stepping into a world that may laugh at him, reject him and take advantage of him. As I reflect upon what the future holds for Jeff, I wonder if he'll make it in the working world. I wonder if staff from the agencies working with him (e.g., mental retardation and vocational rehabilitation professionals) will know him well enough to place him in a job that best fits his capabilities. My hope is that they will select a job to fit Jeff and not place Jeff in just any old job just so he can work.
I wonder what will happen if Jeff's initial job doesn't work out. How will he feel? What will this mean in terms of another job? How will the professionals go about placing him in another job?
Even though Jeff is currently receiving bus training in his high school program, I wonder if he'll be able to handle catching the bus if this is necessary to get to work. And what if he has to transfer on the way? All of these questions run through my mind.
I have thought, too, about how Jeff would relate to his "normal" fellow workers. Even though he speaks well and expresses himself adequately, I wonder if his fellow workers would put him down instead of helping to encourage him. Would he be the butt of jokes and teased inappropriately? How would he relate to his fellow workers on social occasions? Would he have any friends who really care about him? I wonder also about such things as his being able to use the vending machines on the job and buy his lunch if that is necessary. The questions are endless.
Other questions not directly related to the working world are related to Jeff's residential placement. Ernie and I realize that one day soon Jeff will leave home just like any other young adult. The question of whether a group home or an apartment living situation would be best for Jeff is one of our big concerns. We wonder, too, about how well he'll be able to take care of himself. Will he remember to shave, bathe daily and brush his teeth? Will he handle his responsibilities in the group home or apartment in which he lives? We want him to be helpful and cooperative in his living situation. How well he manages these activities of daily living will have a bearing on how well he is accepted by his co-workers and friends.
We cannot help but wonder if he will miss us when he is gone. We also wonder if he will feel the need to spend a night or an occasional weekend or holiday with us. I guess this is a natural feeling of every parent. At this point in time, we doubt if Jeff will really miss us or even want to come home. We feel this way not because he doesn't love us but because if he feels comfortable and cared for, he's happy and content.
One of our every day concerns regarding Jeff is in the area of sexuality. Like most other healthy, 19-year old males, Jeff has a strong sex drive but does not understand it or the possible consequences it might have. Masturbation is relatively harmless and certainly normal, but in today's world of AIDS the whole area of sex takes on a new and more significant, if not frightening, meaning. I think it behooves every parent to become more aware of, and knowledgeable about AIDS and related issues. We're talking about life or death.
As parents, Ernie and I wonder if Jeff will ever be able to marry and, if so, how would he manage if he fathered a child that might be more intelligent than he? The future is full of questions.
But the future is also full of hope -- hope for Jeff and others like him who, twenty or even ten years ago, did not have the opportunity to live as normal a life as is now possible with such programs as supported employment springing up across the state. Jeff and his classmates face a future that's bright with promise and full of opportunity to be the best that God created them to be.
I thank God for giving me the opportunity, the privilege and the challenge of helping to raise such a special child as Jeff. He has taught me the real meaning of unconditional love. It has been said that God gives extra special grace to persons who are born mentally handicapped. I truly believe it for Jeff has a sensitivity and discernment that's rare even in "normal" people. It's beautiful to see. I truly thank God for all the blessings we have received by virtue of being Jeff's parents.
As parents of children who are mentally handicapped, we have a responsibility to be conscientious advocates on their behalf. In this era of budget cuts and competition for the dollar, programs for persons with mental retardation may find themselves in jeopardy. Our voices must be strong and they must be heard at the local, state and national levels. It is our responsibility as parents to educate ourselves about the issues involved and to speak for those less able to speak for themselves -- our children.
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