(“On Herself,” Helen Keller)
When Amy McCubbins of Kenai, Alaska, was born, some of her problems were immediately apparent: she had severely clubbed feet, dislocated hips, and spina bifida. She also had severe respiratory problems.
After she was rushed to a larger medical center, surgeons discovered more problems—Amy was hydrocephalic, and she had a defective heart valve and kidney problems. When she was two weeks old, she had surgeries to install a brain shunt and to correct her hip and feet problems. These operations left her in a body cast with her legs extended at right angles. Chromosomal studies eventually revealed that Amy had mosaic trisomy 18, a severe disorder that is almost always fatal before the child is two months old.
Her mother, Margaret, recalls, “I would rock Amy hour after hour, crying and praying. I was afraid to put her down, thinking she would die.” Margaret felt she couldn’t pray for a miracle, but she prayed for time. “I asked the Lord to let Amy live at least long enough to get the body cast removed, so I could feel her little body next to mine.”
Understanding Multiple Disabilities
For some people, the existence of a child with multiple disabilities raises difficult questions: How could God permit an innocent child to suffer? Or, as one blunt person asked a mother of a multidisabled child, “Wouldn’t your child be better off dead?” While the gospel answers both questions and teaches us to love and value all individuals as children of God, many Church members are uncomfortable around people with disabilities, wondering, What should or shouldn’t I say? What can I do to help?
To know the answers to such questions, one must first understand what constitutes a multidisability.
In simple terms, a person who is multidisabled possesses two or more disabilities—such as blindness, deafness, motor impairments, mental retardation, or communication disorders. But in the mathematics of multiple disabilities, one plus one is greater than two when it comes to the physical, emotional, intellectual, and social problems that such conditions cause. Autism, for example, is a multidisabling condition with unusual characteristics. The body of an autistic person appears normal, but the person’s ability to relate socially and to understand language and sensory signals is impaired. Most autistic people lack communication skills and may treat people as things and things as people. (For further information on autism, see Ensign, Aug. 1983, p. 56.) The term multiple disabilities thus includes such a broad range of disabilities and abilities that generalizations may be misleading. But it is safe to say that such disabilities pose extreme challenges for both the individuals and their families.
What Can I Do to Help?
1. Accept the person as an individual. Don’t ignore him.
According to Nancy Jones, the mother of an autistic child who cannot be taken to church, “Most people never mention Brandon because they are afraid I might be hurt if they say the wrong thing. But I would rather have them say the wrong thing than nothing at all. It fortifies me when someone asks me how he is. Birthdays are some of the most painful times, because he has no friends. Occasionally someone remembers—one teacher came by with a ball, another with a special book—but there have been so many more times when he seemed lost and forgotten.”
Norma Mowrey is the administrator of the United Cerebral Palsy Spastic Children’s Foundation of Los Angeles and Ventura counties. Two of her own children have died of complications resulting from severe cerebral palsy. She says, “I admit that it is unusual to see a woman pushing two wheelchairs down the street. Many times as I have done so, a child will ask, ‘What is the matter with them?’ The child’s mother is usually mortified and wishes she could hide. But the child has simply been open and honest. I love it! I give the child a simple explanation—that their brains have been hurt and so they can’t walk. Then I add, ‘But they would love a new friend! Would you like to push one of the chairs?’ The child is delighted.”
Norma adds good advice: “Find out why disabled children are different. Don’t ignore them.”
2. Recognize that training and patient persistence are often needed in reaching out to those with multiple disabilities.
John Andrew Romish of Portland, Oregon, was born profoundly deaf, and at age sixteen he also became blind. The news of John’s blindness was devastating for him and his family. Communicating with a deaf-blind person is nearly impossible unless you have been trained to use sign language, with the disabled person touching your hands while you sign, or to trace the alphabet into the person’s cupped palm. “About the best you can do,” says John’s mother, Ann, “is shake his hand and give him a hug. Touch is all-important.”
But the rewards of developing a relationship with such a person are worth the effort. In a miracle that is unusual even by Church standards, John recently completed a mission to the hearing-impaired. One of his companions learned sign language fluently in two months—an extraordinary example of the gift of tongues. The two young men became close friends through serving each other. John’s companion once signed an eight-hour mission conference to him, and John, in turn, regularly sat beside his companion at the piano on preparation day while his friend, an accomplished pianist, practiced music that John could not hear or ever fully appreciate in this life.
Someone once remarked that it must be quite a burden to have a companion like John. The elder replied simply, “Oh, I would miss it if John were not holding on to my arm!”
3. Realistically assess the person’s strengths and weaknesses, and adapt programs when possible.
According to Dr. Carla Anderson, a Canadian educator living in Soldotna, Alaska, “There is no one way to treat children with multidisabilities because every problem is individual. Bishops might want to have a meeting with the parents, the child’s auxiliary leaders and teachers, and the visiting teachers and home teachers. At that meeting, the parents could discuss their child’s capabilities and needs, and then the group could look for ways to meet the needs within the ward framework.”
For example, individuals with multiple disabilities often catch illnesses easily, so during flu season, parents may choose not to take their child to church. At such times, the sacrament could be taken to the home. Perhaps a teacher could also visit.
Another example of finding ways to include individuals with disabilities appeared in the article, “Say It with Pictures.” (Friend, Aug. 1988, p. 22; see also “Communication Disorders,” Ensign, Feb. 1991, p. 46.) The page illustrates a simple communication board to be used by someone who can point but cannot talk. When the pictures are enlarged and laminated, the person can pray in class by pointing to the different pictures representing the parts of a prayer. Teachers need to help individuals use all the skills they possess in order to participate as fully as possible.
An issue that has generated some controversy among experts is whether it is better to integrate people with multiple disabilities into “normal” teaching settings or instead to provide a specialized environment where they can interact with disabled peers. Both approaches have been used successfully in the Church. Many educators and parents feel that the most effective approach is to combine the two alternatives—perhaps integrating the disabled person into regular Sunday classes and then offering a weekday specialized activity for disabled students at least monthly. (For more information on special programs, contact the Young Men, Young Women, or Primary General Presidencies, 50 East North Temple Street, Salt Lake City, Utah 84150.)
Church leaders might be surprised at the results of this kind of integration. Carla Anderson, a multidisabilities specialist who served in a stake Young Women presidency, recalls a year when three girls with disabilities attended a Young Women camp. “At first the other girls didn’t even want to be in the same tent with these three, but by the end of the week they were arguing over who would get to sit next to them. It was wonderful to see the others helping the disabled girls pass off requirements and going out of their way to give of themselves. That girls’ camp had more love and unity than any I have ever attended!”
4. Consult with community experts who may help you adapt programs to fit the individual’s needs.
“It is very effective to create a triangle of cooperation and involvement among church, community, and family,” declares Ann Romish. Church leaders and teachers who work with families and community experts can do much to successfully integrate people with disabilities into the Church. Sister Anderson, for example, recalls working with an autistic boy who could not handle Sharing Time. After consulting with his schoolteacher, she designed an individualized Sharing Time program for him based on methods used successfully at his school.
5. Be sensitive to the needs of family members.
“A family can get out of balance with the stress of a multidisabled child,” says one mother of a large family. “With our son’s condition, we have had to cope with everything from frequent seizures to broken windows and furniture. This has led to high levels of stress—as well as to an increased sense of responsibility—for our children as they have helped care for their brother. The stress from this added responsibility has affected them in various ways. One has become totally service-oriented, but the child just older than our disabled child has self-esteem problems, probably stemming from the time and attention given to the disabled brother.”
Caring for a child with disabilities can also cause strain between spouses. In devoting so much time to the child, a parent may unwittingly neglect his or her spouse. Furthermore, the mother and father may not be able to cope to the same degree with the problem; there may even be a tendency to place blame on one partner. Parents of a disabled child may also experience social isolation. “We are never invited anywhere as a couple,” says the father of one disabled child, “and even if we were, it would be difficult to go, since one of us always needs to be home.”
Unfortunately, such strains sometimes lead to divorce. Including couples with multidisabled children in ward social circles and offering assistance could help alleviate some of the stress they feel.
6. Understand that there are stages in adjusting to a disability, as well as variations in a person’s ability to cope.
The shock of learning that a child has multiple disabilities can be overwhelming. But the struggle isn’t over after the initial adjustment—it has only begun. When Brandon Jones was five months old, he contracted meningitis and nearly died. The ward fasted for him, and he received priesthood blessings. His life was spared, but he was left brain-damaged and autistic. “The emotional adjustment was very difficult,” admits his mother. “It was like living with a death over and over again.” More than four years later, Nancy received a spiritual witness that the Lord’s will had been done, which brought her peace. But even this understanding has not freed her completely from inner turmoil. “I still have dips in my ability to cope,” she admits. “Ninety-five percent of the time I’m okay, but I have times when I’m churning inside, especially as I try to adjust to the changes adolescence has brought. Now Brandon is too big to hold, and he is even more aggressive, so I no longer have the comfort of physical contact. I didn’t anticipate this phase in my adjustment.”
Even for a “well-adjusted” person, there are times, as the mother of one disabled child explains, when something will “hit you like lead in the heart and throw you into a depression. It is strange what triggers it. It might be a birthday party for someone’s child, or seeing someone the same age as my child baptized or ordained. At these times, you experience a sense of grief and loss at what you know will never be for your child.”
Carmen Pingree, who serves on the Church’s Committee on Disabilities, notes that, unfortunately, “some people never get over the grieving process. They are immobilized by their sadness.”
Faced with such challenges, some families need a great deal of support. People willing to provide a sensitive, listening ear are much appreciated. As one mother explained, “My nature is to be a Pollyanna and act as though I am on top of things. But I have one friend I can be honest with, and I have found it therapeutic to occasionally cry and let out my feelings.”
Caring friends need to be sure that their support is enduring. People have a tendency to rally around those in need at the moment of crisis, but after their initial concern, they may give less help. The need for support and assistance, however, will persist for a lifetime.
7. Offer to relieve the care-givers.
For years after her son Brandon became disabled, Nancy Jones stayed home from church. Her son’s behaviors made it impossible to take him there, and her husband, Max, was a member of the bishopric. Later she and Max attended different wards so that they could take turns caring for Brandon. Then some sisters from a singles ward offered to stay with Brandon while the Joneses attended church. “They acted as though we were doing them a favor,” Nancy recalls, “because they didn’t have children and enjoyed it. Such a sweet sisterhood developed between us!”
“One of the critical things parents need is a chance to get out and get away,” comments Sister Anderson. “Members of a ward who offer to stay with the disabled child for a few hours or a weekend are of great service. But they need to ask, ‘Can you teach me how to help?’ because the parents often are afraid to leave the child with someone who is untrained.”
Sister Anderson adds that families of multidisabled children “are often functioning under a great strain. They may have heavy financial burdens from the cost of medical care. They may feel a lot of guilt. They may be in a grieving process, one which ultimately releases the image of the physically or mentally perfect child they were anticipating.” With such a diversity of needs, it is critical that those wanting to help seek direction from the Spirit. One sister tells of the time, shortly after she became disabled, when a neighbor visited her unexpectedly. “She said that she felt prompted to come and see me. She listened to me for a while; then, resisting the normal impulse to counsel me, she just put her arms around me and we wept together for the next ten minutes. That’s all she did—but it was exactly what I needed. She had lifted my burden by sharing my pain.”
8. Realistically assess with the care-giver the time he or she has available for Church service.
Providing care for a multidisabled person can be an almost overwhelming burden. Norma Mowrey recounts that for the sixteen years she cared for her two cerebral-palsied children at home, feeding them took an hour per child per meal each day. “I lived on two to four hours of sleep a night. Without the Lord’s help, I never would have survived!” Despite such challenges, many parents say that they not only want but need to serve in Church callings. As one mother says, “I need to serve in callings rather than just be a recipient of service.”
Instead of assuming that a care-giver has no time for Church callings, Church leaders might want to consult the individual. Perhaps others in the ward could care for the disabled person while the care-giver serves in the calling.
9. Help ward members understand.
Nancy Jones recalls, “When Brandon was eight, the brother who taught the Primary class Brandon would have been attending convinced me to bring my son to the class one week. The teacher taught those children about Brandon, explaining differences but concentrating on the things they had in common. The kids got so excited!” The class then had a midweek activity that centered on some of the things Brandon could do. The following Sunday when the class presented a message during Sharing Time, they told the parable of the lost sheep, emphasizing that the Savior loved everyone. “For years after that, those children would greet Brandon whenever they saw him,” recalls Nancy. “The experience was one of the most touching displays of unconditional love I have ever seen.”
Understanding the needs of the disabled also involves understanding the equipment they use. For instance, “the wheelchair of a cerebral-palsied child may look strange, because the position of his body may be very important to his functioning,” says Sister Anderson. “When such things are demystified, the class members then become advocates and helpers for their friend.”
10. Remember that no matter how crippled in body or mind a person may be, there is a whole spirit inside.
The secret to relating to any person with disabilities is to think, If I were in that body, how would I want people to treat me? When Carmen Pingree was touring an institution for the multiply disabled, her group visited a woman who was receiving therapy. While the staff members were explaining her therapy, the woman’s limbs flailed out of control. It was obvious that she couldn’t communicate. When the group left, Carmen went over to the woman, held her hand, and stroked her back for a minute. “Suddenly the woman’s eyes lit up, and a big smile crossed her face,” Carmen recalls. “Her body and mind may have been disabled, but her spirit was whole, and she communicated with me.”
Keeping an Eternal Perspective
For Amy McCubbins and her family, the ordeal of frequent surgeries and trips to the doctor continued. When Amy was five months old, she quit breathing; her mother, Margaret, resuscitated her and rushed her to the hospital. Margaret had reached the point of despair. As she prayed that evening, she pleaded with the Lord, asking him to take her daughter quickly, if she must go, so she wouldn’t have to suffer any more. Immediately, Margaret was told “she is doing her missionary work.” Sleepless, Margaret pondered the message for the next several hours. Finally she concluded, “Well, if she is doing her missionary work, the best thing I can do is hang on and be the best missionary companion I can be!”
In the ensuing four years, Margaret has seen the fulfillment of those words many times. She has had the chance to discuss the gospel with doctors and nurses who have marveled at the source of her family’s courage and commitment to Amy. In addition, many magazines have featured Amy’s story, always mentioning that she comes from a strong LDS family.
Despite their trials, parents with multidisabled children recognize that great blessings come to them. Margaret McCubbins echoes many parents’ feelings: “I believe that these children teach us much about Christlike love. I know how the Lord can love us in spite of our handicaps of soul, because it is the same way I love my daughter in spite of her physical handicaps.”
Whatever the purpose of severe disabilities, the truth is clear: Our Heavenly Father can turn any circumstance, no matter how tragic to our limited understanding, into a blessing. Nancy Jones sums it up when she says, “The tempering effect, the humility, the escape from worldliness, being forced to think of the things that matter most—all of these are constant, daily blessings.”
“We so often hear about the easily recognizable blessings,” says Ann Romish, “that we have a hard time acknowledging that disabilities and sadness can be blessings, for they help us grow. The Lord performs great miracles in our lives if we are patient. Healing our spirit and teaching us how to go forward in the midst of adversity are two of his greatest miracles.”