Raising Children With Special Needs
BY AWAKE! WRITER IN FINLAND
Twenty-year-old Markus (left) cannot eat, drink, or bathe without help. He sleeps poorly and needs attention throughout the night. Being accident-prone, he regularly needs first aid. But Markus’ parents love him dearly. They cherish his mild, kind, affectionate ways. They feel proud of their son despite his disabilities.
THE World Health Organization estimates that up to 3 percent of earth’s population have some form of mental retardation. Impaired mental ability can result from genetic problems, birth injuries, early brain infections, and dietary deficiencies, as well as drug, alcohol, or chemical exposure. In the majority of cases, the cause is unknown. What is it like to be parents of children having special needs? How can such parents be encouraged?
When the Bad News Breaks
The challenge begins when parents find out that their child has a mental disability. “When my husband and I learned that our daughter had Down syndrome, it felt as though our house had collapsed on us and buried us,” recalls Sirkka. Markus’ mother, Anne, says: “When I was told that he would be mentally disabled, I wondered how others would view him. But I soon passed that stage and concentrated on his needs and on what I could do for him.” Irmgard reacted similarly. “When the doctors informed us about our daughter Eunike’s limiting condition,” she says, “I could think only of how I could help my little girl.” Following such a diagnosis, what course is open to parents like Sirkka, Anne, and Irmgard?
“One of the first things that you can do,” advises the U.S. National Dissemination Center for Children With Disabilities, “is to collect information—information about your child’s disability, about the services that are available, and about the specific things you can do to help your child develop to the fullest extent possible.” Applying this information can add a sense of purpose and direction to your caregiving. It is much like charting the progress of a journey on a map, noting the distance traveled and the landmarks reached.
A Silver Lining
Despite the challenges, the dark cloud of childhood mental disability can have a silver lining. How?
First, parents can feel comforted knowing that most such children are not suffering. Dr. Robert Isaacson writes in his book The Retarded Child: “Most are able to be happy, to enjoy the company of others, music, some sports, good food, and friends.” Though they may achieve less and live in a smaller world than normal children, they often feel happier in their “cottage” than do normal children in their “castle.”
Second, parents can feel proud of their child’s hard-won accomplishments. Every new task learned is like a high hill climbed, and the view from the top is rewarding for parents as well as for the child. Bryan, for example, suffers from tuberous sclerosis, seizures, and autism. Though intelligent, he cannot speak and has little control of his hands. Yet, he has gradually learned to drink from a half-full cup without spilling its contents. Attaining this much coordination of mind and body permits Bryan to drink his favorite beverage—milk—all by himself.
Bryan’s father and mother see this achievement as another small victory over his disabilities. “We view our son as a hardwood tree in a forest,” says his mother, Laurie. “Though a hardwood does not grow as fast as other trees, it produces timber of great worth. Similarly, children with disabilities also develop slowly. But to their parents they become like little oaks and teaks of lasting value.”
Third, many parents’ hearts are warmed by their child’s affectionate nature. Irmgard says: “Eunike likes to go to bed early and always kisses each family member before retiring. If she goes to bed before we return home, she will write a little note apologizing for not staying up. She will add that she loves us and that she looks forward to seeing us in the morning.”
Markus cannot speak, yet he laboriously learned a few words in sign language to tell his parents that he loves them. The parents of Tia, a developmentally disabled child, expressed their feelings this way: “She has filled our life with love, warmth, affection, hugs, and kisses.” It should go without saying that all such children need to have their parents express lots of love and affection to them—both verbally and physically.
Fourth, Christian parents feel deeply satisfied when their child expresses belief in God. A case in point is Juha. At his father’s funeral, he surprised everyone by asking if he could offer a prayer. In his short prayer, Juha expressed his belief that his father is in God’s memory and that God would in due time resurrect him. He then asked God to help his family members, mentioning each by name.
Eunike’s trust in God likewise makes her parents happy. Eunike cannot understand everything she learns. For instance, she knows many Bible characters, but they are unrelated in her mind—parts of a puzzle that do not form a complete picture. Nevertheless, she grasps the idea that Almighty God will one day rid the earth of problems. Eunike looks forward to living in God’s promised new world, where she will have her complete mental faculties.
Encouraging Less Dependence
Mentally disabled children do not simply remain children—they grow into mentally disabled adults. Parents therefore do well to help children with special needs not to be more dependent than necessary. Markus’ mother, Anne, says: “It was easier and faster for us to do everything for Markus. But we made every effort to help him to do as much as he could for himself.” Eunike’s mother adds: “Eunike has many delightful qualities, but she can be stubborn. To get her to do something she doesn’t want to do, we have to appeal to her desire to please us. And even after she has agreed to undertake a task, we have to follow through and encourage her all the way.”
Bryan’s mother, Laurie, constantly searches for ways to make his life more fulfilling. Over a period of three years, Laurie and her husband have helped Bryan learn to type. With immense satisfaction Bryan now sends e-mails to his friends and family. But he needs someone to support his wrist as he types. His parents are helping him progress to the point where he will need support only at the elbow. They know that those few inches from wrist to elbow represent a huge measure of increased independence.
Still, parents should not expect too much or push their child too hard. Each child has different potential. The book The Special Child suggests: “A good rule of thumb is to try to maintain a balance between encouraging independence and providing enough assistance to prevent frustration.”
The Greatest Source of Help
Parents of disabled children all need great patience and endurance. With problem piling upon problem, many parents experience times of despair. Exhaustion often takes its toll. Tears fall, and self-pity may sometimes surface. What can be done?
Parents can call upon God, the “Hearer of prayer.” (Psalm 65:2) He gives courage, hope, and strength to endure. (1 Chronicles 29:12; Psalm 27:14) He comforts our aching hearts, and he wants us to “rejoice in the hope” that the Bible provides. (Romans 12:12; 15:4, 5; 2 Corinthians 1:3, 4) Godly parents can be confident that in the future, when ‘the blind see, the deaf hear, the lame walk, and the speechless shout for joy,’ their precious child too will enjoy perfect mental and physical health.—Isaiah 35:5, 6; Psalm 103:2, 3.
WHAT PARENTS CAN DO
▪ Educate and inform yourselves about your child’s disability.
▪ Try to maintain a positive attitude.
▪ Help your child to achieve his or her potential level of independence.
▪ Seek courage, hope, and strength from God.
WHAT OTHERS CAN DO
▪ Speak intelligently and sincerely with the child.
▪ Talk with the parents about their child and commend them.
▪ Be sensitive to and considerate of feelings.
▪ Share in activities with parents and families of special children.
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How Others Can Help
Just as onlookers admire the endurance of marathon runners, you may marvel at the stamina of parents who care for a disabled child—24 hours a day, 7 days a week. Spectators along a marathon route traditionally offer runners bottles of water to sustain them. Can you offer refreshment to parents engaged in the lifelong care of a special child?
One way you can help is simply by talking to their son or daughter. You may feel uneasy at first, for the child may respond very little or not at all. Keep in mind, though, that many such children enjoy listening and may well think deeply about what you say. In some cases their minds are like icebergs that lie largely below the surface, and their faces may not express their deep feelings.*
Pediatric neurologist Dr. Annikki Koistinen suggests how you can make conversation easier: “At first you might talk about their family or pastimes. Speak to them according to their actual age, not as if you were speaking with someone younger. Talk about one subject at a time, using short sentences. Give them time to think about what you are saying.”
Parents too need your conversation. Your empathy for them will be enhanced as you become more aware of the emotional challenges they face. Markus’ mother, Anne, for instance, longs to know her beloved son better. She feels sad that he cannot speak to her and explain what is going on in his mind. She also worries that she may die before her son, leaving him without a mom.
No matter how much parents give of themselves in caring for a mentally disabled child, they often feel that they should be doing more. Laurie, Bryan’s mother, takes herself to task for every little mistake she makes in looking after him. She also feels guilty for not having been able to give more attention to her other children. Your interest in and respect for such parents and their feelings dignifies and supports them and their children. In this regard Irmgard says: “I welcome conversations about my daughter. I feel warmth for those who are willing to share the smiles and tears of my life with Eunike.”
And there are many other ways—large and small—in which you can help. Perhaps you can invite the parents and their child to your home or ask them to join in your family activities. It may also be possible for you to spend a few hours with the child while the parents rest.
See “Loida’s Journey out of Silence,” in the May 8, 2000, issue of Awake!
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Showing genuine concern dignifies parents and child
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Like Eunike, mentally disabled children continue to need affection as they grow older
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Laurie has helped her son, Bryan, learn to type, encouraging his independence