Raising a Child With Down Syndrome—The Challenge and the Reward
“I’m sorry to have to tell you this, but your baby has Down syndrome.” The doctor’s painful words change forever the lives of the parents. “I felt as if I were having a nightmare, and I wanted to wake up,” one father named Víctor recalls.
BUT there is also an upside. Emily and Barbara, two mothers who reared children with Down syndrome, describe their experiences as an “emotional roller coaster of soaring successes and plummeting disappointments, daily frustrations and challenges, and exciting accomplishments and achievements.”—Count Us In—Growing Up With Down Syndrome.
What is Down syndrome (DS)? * Simply put, DS is a lifelong genetic condition that affects about 1 baby in every 730 in the United States. * Children with DS have varying degrees of learning and language disability as well as impaired motor skills, ranging from mild to severe. They also mature at a slower pace emotionally, socially, and intellectually.
To what extent does this condition affect a child’s learning ability? Jason, who has DS, explains in the book Count Us In—Growing Up With Down Syndrome, of which he is a coauthor: “I don’t think it’s a handicap. It’s a disability for what you’re learning because you’re learning slowly. It’s not that bad.” Yet, each child with DS is different and has his own talents. In fact, some of them are capable of learning enough to become active members of society and to enjoy a fulfilling life.
Nothing can be done to prevent this genetic disorder—either before or during pregnancy. DS is nobody’s fault. But it does come as a huge blow to the parents. What can they do to help their child and help themselves?
Coming to Terms With Reality
Coming to terms with DS is not easy. “The shock was incredible,” a mother named Lisa recalls. “After listening to the pediatrician’s explanations, my husband and I wept. Whether that was for [our daughter] Jasmine or for ourselves, I don’t know. Perhaps a little of both! Nevertheless, I longed to hold her in my arms and tell her that I would always love her, no matter what the future held.”
“Many thoughts went through my mind,” Víctor says, “dread, rejection. We thought that nothing would be the same, that others would not like to associate with us. To be honest, these were selfish ideas as a result of fear of the unknown.”
Those feelings of grief and uncertainty usually last for some time, or they may resurface suddenly. “I often wept because of [our daughter] Susana’s condition,” says Elena. “But when she was about four, she told me, ‘Mummy don’t cry. It doesn’t matter.’ Obviously, she did not understand why I wept, but at that moment I resolved to stop feeling sorry for myself and dwelling on negative thoughts. Since then I have tried to concentrate my efforts on helping her to progress to the greatest extent possible.”
Making Things Work for the Child
What is the key to successful training? “Start by loving them! Everything else comes after that,” recommend experts from a DS association. “Individuals with Down syndrome are people first,” states Professor Sue Buckley. “[Their] development . . . is influenced by the quality of care, education, and social experience offered to them, just like all other people.”
During the last three decades, learning techniques used to help children with DS have improved a great deal. Therapists advise parents to include these children in all family activities and to help them through play and early intervention programs to develop their skills. Such programs—which should start soon after birth—include physiotherapy, speech therapy, and extra personal attention, along with emotional support for the child and the family. “Susana has always been one of us,” says Gonzalo, her father. “We have included her in all our family activities. We’ve treated and corrected her the same as we did her sister and brother, taking into account her limitations.”
Progress may be slow. Babies with DS may not say their first words until two or three years of age. Their frustration at not being able to communicate may make them cry or become bad tempered. Nevertheless, parents can teach them some “pre-language skills.” For instance, they might use a simple signing method, accompanied by gestures and visual aids. In this way, the child can convey important needs such as “drink,” “more,” “finished,” “food,” and “bed.” “As a family, we would teach Jasmine two or three signs a week. All the focus was on fun and repetition,” says Lisa.
Each year more children with DS attend a mainstream school and join in social activities with siblings and friends. True, learning is more difficult for them, but going to school with children of their own age seems to have helped some fend for themselves, interact with others, and progress intellectually.
Since they develop more slowly, the gap between DS children and their peers becomes wider with age. Nevertheless, some experts still advise that they go to a regular school for secondary education, providing that the teachers and parents are in agreement and that additional learning support is available. “The greatest advantage of Yolanda’s going to a regular secondary school was her complete integration,” says her father, Francisco. “From the very beginning, she could play with other children, and they learned to treat her normally and included her in all their activities.”
Satisfaction Outweighs the Sacrifices
Rearing a child with DS is not a bed of roses. It requires much time, effort, and dedication, as well as patience and realistic expectations. “There are many tasks involved in caring for Ana,” says Soledad, her mother. “You have to learn to become a patient mother, nurse, and physiotherapist, besides doing the regular chores at home.”
However, many families insist that having a DS child has brought them closer together. Siblings become less selfish and more empathetic, and they come to understand the disabled better. “Our patience has been richly rewarded, and in time we have seen the results,” say Antonio and María. “Marta—our oldest daughter—has always helped us care for Sara [with DS], and she shows a sincere interest in her. This instilled in Marta the desire to help other disabled children.”
Rosa, whose older sister has DS, explains: “Susana has contributed a great deal to my happiness and has given me so much love. She has helped me become more sympathetic toward other people who have disabilities.” Susana’s mother, Elena, adds: “She responds to kindness. When she receives love, she gives back double.”
Emily and Barbara—the two mothers quoted at the beginning of this article—discovered that “people with Down syndrome continue to grow and learn throughout their lifetime, and to benefit from new opportunities and experiences.” Yolanda—who herself has DS—gives this simple advice to parents of a child with Down syndrome: “Love him very much. Care for him as my parents have cared for me, and don’t forget to be patient.”
^ par. 4 We will use the abbreviation DS throughout the article.
^ par. 4 The name comes from John Langdon Down, an English physician who published the first accurate description of the syndrome in 1866. In 1959 the French geneticist Jérôme Lejeune discovered that DS babies are born with an extra chromosome in their cells, for a total of 47 rather than 46. Later, researchers found out that the extra chromosome was a copy of chromosome 21.
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Do People With Down Syndrome Enjoy Life?
What They Say. . .
“I like my job in the workshop of my training center because it makes me feel useful.”—Manuel, 39 years old
“What I like the most is eating my mother’s paella and preaching the Bible with my father.”—Samuel, 35 years old
“I like to go to school because I want to learn and my teachers love me very much.”—Sara, 14 years old
“Don’t worry, behave well, and play with everybody, and you’ll learn step-by-step.”—Yolanda, 30 years old
“I really enjoy reading, listening to music, and being with friends.”—Susana, 33 years old
“I want to grow up. I want a life.”—Jasmine, 7 years old
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Strategies to Improve Communication
Here are some suggestions for interacting with people with Down syndrome:
● Place yourself face-to-face to ensure direct eye contact.
● Use simple language and short sentences.
● Support speech with facial expressions, gestures, and signs.
● Give them time to understand and answer.
● Listen carefully, and ask them to repeat instructions.