John Drake* was four years old when his family noticed that he was mentally regressing for reasons they are even now not sure of. But whatever the cause of the intellectual impairment that left him unable to read or to think analytically, John, now forty-seven, leads a productive life. Congenial and able to remember details, John gets along well with others. He takes a bus to work, where he packages clothing, and lives in an apartment decorated with his own paintings. He likes to entertain friends and visitors, among them assistants who help him with shopping and goal setting.
John needs help from members of the Church, too. Since John moved into his new place from a sheltered group home, he hasn’t been to church much—possibly because he doesn’t have a driver’s license, and therefore needs a ride to meetings and activities. John wishes he could have a Church calling. He sings, is an Eagle Scout, and serves as a leader for others who are under state supervision in his apartment complex, which makes him think that “people could learn something from me, too.”
The members of Garth Wardle’s ward have learned a lot from him.
Intellectually impaired since childhood, Garth, now fifty-seven, serves as assistant to the high priests executive secretary and as his Sunday School class president. Most would agree, however, that Garth’s greatest contribution to the ward has been through thirty-five years of Scouting leadership, most recently as the Blazer B leader. Because of Garth’s attention to detail, concern for his Scouts, and excellent camping skills, he recently received the Silver Beaver award, one of Scouting’s highest honors for adult leaders.
Life has changed for people with intellectual impairments, especially since the days in which anyone labeled mentally retarded was routinely institutionalized. Today, people with intellectual impairments are, for the most part, reared at home, where they have the benefit of family association and, in many cases, professional training. They are sometimes able to attend mainstream schools, where innovative programs for students with disabilities stress practical and social skills. If available, community programs for adults then give them a chance at jobs, group homes, and self-respect through independence.
In the words of George Durham, a doctor who has a teenage daughter with Down syndrome, “When people complain of how the world is worsening, I usually reflect gratefully upon what a better place it’s become for people with disabilities.” As Garth’s story illustrates, Church leaders and friends can also make the Church a better place for members with mental disabilities. But helping requires understanding—of what it means to be a person with an intellectual impairment, of what it means to be his or her family member. Old prejudices and misconceptions prove stubborn barriers to constructive assistance.
People with intellectual impairments usually do not have a disease, suffer from mental illness, or remain eternal children. Rather, they grow mentally, and sometimes physically, at a slower-than-average rate. They can and do learn communicative, social, academic, and vocational skills. It may take them longer to learn, depending on whether the level of retardation is mild, moderate, severe, or profound. (See Anne F. and Andrew C. Squires, Down Syndrome: Now What Do I Do?, Sandston, Va.: Indian Orchard Publishing Co., 1990, p. 53.)
Different factors cause mental retardation. Genetic irregularities account for a variety of conditions, the most common of which is Down syndrome. Instead of having forty-six chromosomes in each cell, people with Down syndrome have forty-seven chromosomes. Because extra genetic material can cause a wide variety of medical problems, individuals with Down syndrome often suffer from heart, intestine, eye, and other problems, including retardation in varying degrees. (See Karen Stray-Gunderson, ed., Babies with Down Syndrome, New York: Woodbine House, 1986, pp. 47–57.) Richard and Marianne Johns, for example, nurtured their Down syndrome son through pneumonia, respiratory failure, and heart failure during the first four years of his life. Others born with Down syndrome, however, may have few of the health problems commonly associated with the condition.
Frank and Judith Ipsen’s daughter, born in 1963, suffers from a less-known genetic condition, Prader-Willi syndrome, a multiple malformation syndrome caused by a small deletion in one chromosome. (See Charles M. Strom, M.D., Ph.D, Heredity and Ability: How Genetics Affects Your Child, New York: Insight Books, 1990, p. 165.) Almost lifeless as a newborn, Kimberly didn’t cry or learn to suck. At three, Kimberly began an obsession common to individuals with her condition: eating. Many die in their teens from obesity. Not until Kimberly was twelve years old was the cause of her retardation, poor muscle tone, and food obsession properly diagnosed.
John Drake’s family wonders if he may have suffered from phenylketonuria (PKU), a genetically caused metabolic disease in which the body is unable to digest protein properly. Today, newborns in the United States are routinely screened for PKU; if test results are positive, infants are given a special low-protein diet that prevents the otherwise inevitable brain damage that accompanies PKU. (See Heredity and Ability, p. 184.)
Most causes of retardation, however, are nongenetic, such as problems during pregnancy, complications at birth, brain injuries, seizures, exposure to toxic materials, and deprivation. Some intellectual impairments have no known medical explanation (see Heredity and Ability, pp. 69–88); others come later in life.
William B. Harding represents many whose intellectual impairments came because of an accident. At age eighteen, he was involved in a motorcycle crash that injured his brain stem. He lost some control of his muscles and suffered a speech impediment and other difficulties. Yet Byl (as he calls himself instead of his pre-accident nickname Bill, because “I’m a different person now”) was able to serve a mission and is currently completing a degree at Mesa (Arizona) Community College.
Causes for intellectual impairment, then, are myriad, and the degrees of retardation vary greatly. Obviously, some individuals require more help than others, and some require help in specific areas. Understanding the causes and conditions of a person’s intellectual impairment is the first vital step in offering support.
A vital second step lies in helping the families. Sensitivity to family members’ feelings, along with hands-on help, goes a long way in bettering what can become an overwhelming situation. “It is painful beyond belief to be told that your precious new baby has [a mental disability],” writes Marilyn Trainer, the mother of a child with Down syndrome. “Instead of bringing that special sense of joy, all those months of waiting end with your world turned upside down.” (Babies with Down Syndrome, p. 27.)
Families, especially parents, of babies with mental disabilities need time to mourn “the child we didn’t have,” as George Durham describes it, “before learning to love the child we did have.” But that doesn’t necessarily mean leaving the family to mourn alone. The Durhams received much needed support from a neighbor who offered a listening ear and an open heart after others had provided only awkward silence. Marianne Johns found that “it was better to have people come and say the wrong thing than to have them not come at all.”
The grief often runs deep, and it takes a sensitive, conscious effort on the part of others not to offend. One parent of a child with intellectual impairments found testimony meetings unbearable when a mother of a large family continually expressed gratitude that all of her children were “normal and healthy.” Another mother, given a job as Primary nursery leader after the birth of her child with a brain injury, grieved weekly at the sight of robust toddlers rapidly progressing—painful reminders of the slow, difficult road ahead for her baby.
Yet parents of children with intellectual impairments do not want pity or, worse, misdirected comments like “Aren’t you lucky to have a celestial baby?” or “How long will she live?” Said one mother: “I just want encouragement. Instead of ‘I feel so sorry for you,’ I’d rather hear ‘What a great job you’re doing with your son’ or ‘I notice your boy’s speech is really improving.’” Another parent says that “the nicest times are when people treat Chris like any other baby. They say, ‘Oh, what a beautiful baby!’ And that makes us proud because he is a beautiful baby and we feel very happy about that.” (Babies with Down Syndrome, p. 42.) For such parents, it is the simple, normal kindnesses that indicate acceptance for themselves and their children: invitations to birthday parties, adults who educate themselves about the child’s limitations and abilities, and neighborhood friends who reciprocate invitations to play.
But few parents can bring themselves to ask for such courtesies, just as few can bring themselves to ask for physical and emotional assistance. That’s why Conrad and Shauna Hendrickson, parents of seven children, two with Down syndrome, are grateful when ward members volunteer to baby-sit while Conrad and Shauna attend the temple. “We especially appreciate the young women coming over and playing games with our special-needs kids, teaching them shapes and colors.”
Although some families may appear strong on the outside, all are coping with a great deal of stress. In a 1972 study entitled “Brothers and Sisters of Retarded Children,” researchers found that of the eighty-three siblings interviewed, half were stronger for the experience—showing more tolerance and compassion and less prejudice—and half were resentful of their families’ situation—feeling deprived of the attention that could have been theirs. (Frances Grossman, as cited in Robert Perske, Hope for the Families, Nashville: Abingdon Press, 1986, p. 74.)
Ward members can help compensate for some of the attention lost on siblings, or even on spouses, by helping to free the family from some of the responsibility. A mother of twins, one of them mentally disabled, worries that at Church meetings the nondisabled twin is always responsible for her sibling: “In Primary, she always leads her sister to class, takes her to the bathroom, entertains her when she’s bored. It’s wonderful when other children help as well.”
Not having to do it all gives families, and marriages, emotional time-out from the demands of their high-need member. It also allows others to learn compassion and tolerance. David and Jenny Hawks, for example, have virtually adopted ward member Garth Wardle, the Scouting expert, into their family. He vacations with them, eats Sunday dinner with them, and teaches their sons camping skills.
As a result, says David, “our kids’ teachers have commented on how readily they include those who are different and how sensitive they are to others’ needs.” But just as important, says Jenny, “we appreciate Garth’s love and consideration. He’s a friend who calls us on our birthdays or just to tell us thanks for some small thing. ‘Uncle Garth’ has truly blessed our lives. I can’t imagine we could love him any more, even though it will be incredible when, some day, we will see him whole.”
When the Hendricksons moved into a new ward, Conrad immediately let the ward know about his two daughters with Down syndrome. Soon, ward members’ normal apprehension and curiosity gave way to acceptance as everyone got to know the family. Teachers and youth leaders would occasionally voice valid concerns or needless worries, but experience usually changed their perspective. One leader who had been particularly apprehensive, Shauna recalls, “ended up crying when she got released because she said she’d miss my daughter so much.”
Overcoming personal fears and prejudices may be the most important service a person can offer to people with intellectual impairments. Only after taking that step can friendship and assistance begin. Cheryl Knaub, the mother of two sons with mild intellectual impairments, cerebral palsy, and muscular dystrophy, appreciated the gesture her bishopric made in having an expert speak in sacrament meeting. “Education is the only way for people to understand the range of mental disabilities that exist,” she observes. “Mini-classes or outside speakers are extremely helpful.”
One father describes a turning point that occurred in his ward when a nursery leader spoke in sacrament meeting about his daughter, who has a mental disability. “She described three people who had greatly influenced her life, and one of them was our daughter. My wife wept tears of joy to hear someone talking about our daughter like she was a real person. After that, barriers fell, and in their place came an outpouring of acceptance.”
People with intellectual impairments want and need to be treated like others. Sally Hanna, seminary principal for the Granite (Utah) School District’s Hartvigsen School for students with disabilities, observes: “Saying ‘Oh, what perfect, celestial children the mentally disabled are’ is really a cop-out, maybe even a certain form of prejudice. They’re children of God, just like the rest of us, with faults and strengths.” Parents of special-needs children know that not all people with mental impairments are perennially happy or completely obedient.
Judy Hales appreciates Primary leaders and teachers who expect the same standard of behavior from their intellectually impaired son, David, as they do from the other children. “I think it’s wonderful that his Primary teachers will come to me and ask, ‘What’s the best way to discipline David?’ rather than overcompensate for him. It really helps him progress.” One mother sometimes feels like asking well-meaning friends who indulge her son when he’s misbehaving, “Would you want to encourage your child to do that? Believe me, it will only hurt my son in the long run to reinforce bad habits.”
Adults may unconsciously reinforce prejudice when they indulge people who are intellectually impaired or treat them condescendingly. But adults can also set a good example by fostering peer acceptance. “It’s hard on the whole family to watch the girls get teased,” says one parent with two children with disabilities, “and I really appreciate parents who take the time to educate their children.” Judy Hales finds that children are more at ease around her son when one of their parents explains in simple terms the nature of his impairment. “Kids know David is different, so it doesn’t help for a parent to say he isn’t. I’ve found it helpful to tell an awkward adult, ‘Please go ahead and explain to your child,’ to make things more comfortable.”
Love and support can be supplied not only by individuals but also by organizations. As a service project, one ward Relief Society cleaned and refurnished a group home for people who are mentally impaired.
Ward members in a rural area learned of the purchase of a house in their area for a Prader-Willi syndrome group home. Group homes for people with this condition are vital and even lifesaving. Few parents can successfully monitor their children’s eating obsessions twenty-four hours a day. Thus, parents and relatives of a small group with Prader-Willi syndrome were pleased when the new neighbors and ward members held a meeting to learn about the people who would soon be living among them, and then literally welcomed them with open arms. Many now offer transportation, bring fresh vegetables to the home, teach special classes at church, and support fund-raisers. They thoroughly enjoy the diversity the group has added to their lives.
In May 1992, David Worthen left for the Washington Spokane Mission at age twenty-three. Intellectually impaired and mildly autistic since birth, David nevertheless always wanted to serve a mission. And why shouldn’t he? He’d been included, says his mother, Jean, in every facet of the Church for all of his life. His story, in fact, mirrors the suggestions offered by the Church Committee on Disabilities on helping these individuals participate fully in the gospel.
Ward leaders focused on the things David did well and recognized his achievements: medals in the Special Olympics, two-time student of the year at his school for students with disabilities, service as student-body president, and excellence at his jobs in a grocery store and on a golf course. David took part in the ward’s regular programs, which leaders adapted to his needs. He attended Primary, and a leader involved him fully in Scouting, making sure the other youth helped and befriended him. David went on to earn his Eagle.
When David felt ready, he was baptized. He received the priesthood and participated in the ordinances of the gospel. He received his patriarchal blessing and held callings: chorister for priesthood meeting, member of the deacons quorum presidency, and secretary in the elders quorum presidency. David also sang in the ward choir. “His speech impediment goes away when he sings,” says his mother.
When the time came for David to serve a mission, his bishop encouraged him, and a member of his stake presidency, according to Jean, “did a lot of footwork in order to arrange for a three-month trial mission first—in which David saw eight of his investigators baptized.”
The ward misses David now that he’s on his full-time mission. “Just about everyone in the ward dropped by to talk to him before he left,” recalls Jean. “And on the night before David went into the Missionary Training Center, the ward choir came and sang to him. All of us were very touched.” People who attended David’s farewell told his family they’d never been to a more spiritual meeting.
Not all members with intellectual impairments are able to fulfill missions. But they do have something to contribute, to which their families readily attest. Marianne Johns particularly appreciates “three wonderful things about Bryan. He won’t ever let us go to bed without family prayer. He won’t tolerate contention and plugs his ears if there’s a quarrel. And he’s appreciative of everything. ‘Nice dinner, Mom,’ he’ll often say. Who couldn’t be crazy about a kid like that?”
Byl Harding even appreciates the meaning that his motorcycle accident gave to a teenage life veering away from gospel principles: “I would never go back to the way I was. A damaged brain stem is well worth the chance I had to start over.” He’s particularly grateful to the ward that rallied around him after doctors said he wouldn’t walk for years. Members took him and his wheelchair to softball games, to movies, and to each other’s homes. Six months later, Byl was walking. As the years went by, he says, “my mind even began working better.”
Byl has shared his experiences in talks and when teaching classes in his student ward. “A lot of people are struggling,” says Byl, “and I feel like I can relate to that and help them. Maybe that’s what I’m most grateful for—being able to bless the lives of others. Isn’t that what being a member of the Church is all about?”
Instill a testimony of the Savior. Rose Coshow, a special education teacher who taught youth with mental disabilities in the Young Men/Young Women program, says, “These kids are emotionally perceptive. They know if you’re a phony. But if you’re a true representative of Christ’s love for them, they feel it and implicitly trust your testimony of his divinity and of his gospel.”
Consult with parents. Find out about the child’s interests as well as his abilities and limitations. What are his favorite hobbies, foods, and toys? Can he do things like color, socialize, or write? Should you be aware of any medications the child is taking? What are the most effective and appropriate ways to encourage good behavior?
Adapt regular classes to the individual. Children, youth, and adults with intellectual impairments all need to be with their peers as much as their peers need to be with them. A teacher’s aide, preferably not the person’s parent or guardian, could provide diversions when needed. A box of gospel-centered toys or activities, or the assignment of special responsibilities (such as returning something to the meetinghouse library), also provide a break.
Focus on the positive. Judy Hales recalls the day her son David offered the opening prayer in Primary after practicing all week. Terrified by the large congregation of children, David froze until, with his father’s promptings, he was able to utter a small prayer. “Every teacher and leader in that Primary made a point of complimenting David on his prayer,” recalls Judy. “It was a wonderful experience for him.” Teachers should always provide experiences that ensure success. Prepare the student ahead of time to answer a question. Find out a talent, any talent, and have the child use it.
Facilitate active involvement. Assign the student to open doors, greet others, or set up chairs. If he can’t color, let him pass out crayons. One mother of a child with an intellectual impairment who uses a wheelchair observed that the setup in the Primary room didn’t allow her son to go anywhere but to the back of the room, where he quickly lost attention. Make sure the individual enjoys an environment that allows interaction.
Use concrete examples. People with mental disabilities have difficulty grasping abstract ideas. For Sally Hanna, the best visual aid is the real thing, such as an actual iron rod. The second best is a model. The third best is a picture. And for Sally, the fourth best—talking only—doesn’t exist.
Slow down the pace. Divide up a lesson to teach one concept at a time, and then repeat the concept several times. People with intellectual impairments often have a short memory and learn best by repetition.
Adapt award requirements. One girl with an intellectual impairment went through the Young Women program without ever working on the Personal Progress Award. Then, when she watched her younger sisters earn their Young Women awards, she wondered why she was different. Youth with mental disabilities are capable of accomplishing many of the Church and Scouting awards if leaders adapt the program to their needs. Such recognition boosts self-esteem and feelings of belonging.
Foster peer acceptance. Tell the class about the person. Sally Hanna recommends a “buddy system” in which different students are assigned to walk a fellow student with mental impairments to class, help during games, or even call during the week. “Many of these kids would love to get a phone call from a friend,” she says. “It’s another little thing that everyone in the family seems to experience but them.”
Show love through consistency and dedication. Whenever Rose Coshow taught youth with intellectual impairments, she says, “I prepared just as thoroughly for them as I would for any other class—probably even more diligently, trying to create visual aids and concrete examples. It disappointed me when some teachers felt the kids wouldn’t learn anything, so they hardly prepared.” People who are intellectually impaired learn, like the rest of us, through inspired preparation. A class with constantly new teachers and inconsistent class preparation only increases an intellectually impaired person’s feelings of inadequacy. Sally Hanna says the best teachers “treat a special-needs student like they’d want their own family member treated. That, I think, is the key to a spiritual experience for everyone involved.”