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Copyright © 2001 by Paul H. Brookes Publishing Co. All rights reserved.
From Parent to Parent
As we begin the new millennium, human expectations for the quality of life are higher than every before. Hopes and dreams soar at the impending birth of a new baby. When we are told, however, that our baby has Down syndrome and we must reshape our hopes and dreams, our original parental sorrows remain unchanged. It is perfectly normal to grieve.
Of all the joys and sorrows of a lifetime, no event was ever more traumatic for my husband and me than the birth of Martha, our daughter who has Down syndrome. We were shocked, shattered, and bewildered. No woman ever really expects to give birth to a child with disabilities. Prior to Martha's birth, mental retardation had simply been a statistic to us — something that happens to someone else; yet no child has ever taught us so much or brought us so much love.
Today, because of the advances in prenatal testing and screening, it is not unusual for parents to know prior to the birth of their baby that they will have a child with Down syndrome. Many choose to continue the pregnancy, realizing that no child, at any stage in life, comes with a written guarantee of perfection. These are parent of great courage, and in the months preceding their child's birth, many resources are available to them to help plan for their child's optimal care. They may wish to speak to other parents and be assured that it is alright to grieve for the loss of the child of their dreams.
If you are new parent of a baby with Down syndrome, then I can share the deep sorrow you feel in every fiber of your being, the aching disappointment, the hurt pride, and the terrible fear of the unknown. But I can tell you from personal experiences that having known this ultimate sorrow, you will soon learn to cope better with every phase of life. You will be happy once again, and through your child you will receive undreamed of love, joy, and satisfaction.
If you are the parent of an older child with Down syndrome, then you have probably already formed a special bond with other parents of children with special needs, parents who have shared the same intense joys and sorrows. If you are a special educator or work in human services, then you, too, must be elated at the progress that has occurred for individuals with mental retardation. Your continued encouragement and reinforcement and your willingness to see each child as a unique and valuable human being can add immeasurable dimensions to the lives of children with special needs and to the lives of their families.
Life cannot remain the same. The decisions to choose a profession or a new career, to marry, or to have a child — all important milestones in life — imply change. The addition of a child with Down syndrome to a family precipitates even more rapid change, but the loving support you will meet at each phase will be an enriching experience.
My first fear was for our marriage. If it had been a shaky commitment, our new child could have provided us with an opportunity to blame each other or to make excuses for never finding time for self, each other, careers, or friends. But if you work at it, this special child can be the opportunity for better communication and for finding new courage and love in your partner. Personally, I have never appreciated my husband so much; the feeling of mutual support has enhanced our marriage.
I feared for our other four children. I wanted to give each of them enough time so that they would not feel neglected or harbor unspoken feelings of shame or resentment. Their response, their potential for love, has overwhelmed us.
|About the Authors|
|1||From Parent to Parent||1|
|2||A Brief History of Down Syndrome||9|
|3||Exploring the Causes of Down Syndrome||17|
|4||Prenatal Diagnosis and Genetic Counseling||29|
|5||A Child with Down Syndrome Is Born||41|
|6||Physical Features of the Child||51|
|7||Medical Concerns and Health Issues||59|
|9||What to Expect as Your Child Develops||83|
|10||Feeding the Young Child||97|
|11||Early Developmental Stimulation||105|
|12||Stimulating the Child's Gross Motor Development||117|
|13||Fine Motor Skills and Play: The Road to Cognitive Learning||141|
|14||Raising a Child with Down Syndrome||157|
|15||Developing Communication Skills||169|
|16||Preschool and Kindergarten: A Time of Enlightenment and Achievement||191|
|17||Education from Childhood Through Adolescence||203|
|18||Adolescence and the Transition to Adulthood||237|
|19||Recreation: Key to a More Fulfilling Quality to Community Life||247|
|20||Working in the Community Through Supported Employment: It's All About Choices||271|
|21||Does Parenting Ever End? Experiences of Parents of Adults with Down Syndrome||293|
|22||Biomedical Research and the Future of Down Syndrome||303|