Adult Letter of Introduction

This chapter describes the many routes to adulthood that individuals with Down syndrome may take. It also addresses the roles that parents of adults with Down syndrome play and the pathways they may choose as they help their children grow as adults. This chapter is based on a 10-year study, funded by the National Institute on Aging, of older families who had an adult child with mental retardation living at home when the study began 1988. Of the 461 families that participated in the project, almost one third had an adult child with Down syndrome. We interviewed all participating families eight times over the 10-year study period. We watched and learned from them about the ups and downs they encountered as they struggled to manage their own lives and continue to provide a safe, loving, and socially active home for their adult child with mental retardation. We also learned how parents respond to newly recognized health concerns for older adults with mental retardation, including special concerns for adults with Down syndrome.

During the course of the study, approximately one quarter of the families sought and found a residential program for their adult child; some of the families planned for the transition with meticulous care, and other experienced this dramatic change more precipitously because of unexpected illness in the parents or in the adult with mental retardation. This study gave us a window through which we could understand the many different ways in which older parents continue their parenting, even though most of their peers with typical children have long since relinquished the active parenting role. Although problems arose for most parents during the 10-year study, as one mother said, "These are the golden years of caregiving."
The birth of a child with Down syndrome affects many lives; the child's own, naturally, but also the parents, grandparents, siblings, and extended relatives. In our research, we have learned a great deal about the continuing role of extended family members in the quality of life of individuals with Down syndrome. Family bonds don't break; They bend to the changing life circumstances and opportunities of individuals with Down syndrome. The ability to be flexible and open is the hallmark of successful transitions and adaptations within families. Our research suggests that flexibility, careful future planning, maintenance of active social support networks, and active coping strategies are key resources for parents that are associated with greater life satisfaction and well- being among all family members.

Beginning with the birth of a child with Down syndrome and continuing through the child's school years, parents of children with Down syndrome are confronted with a complex array of issues. Many of the goals that are set for the child focus on helping the child become as independent and self-sufficient as possible. Over time, parents learn that there is no time schedule that governs the pace at which their child with Down syndrome learns new skills. Provided that the child is in good health and is provided with opportunities to grow and learn, development will continue throughout the individual's lifetime. However, a challenge that some adults with Down syndrome face is the early onset of physical and cognitive aging, which poses the need for unique and time-sensitive supports from the formal service system to all family members.
Parents attest to the tremendous variability in the levels of independence achieved by individuals with Down syndrome. Some adults with Down syndrome need and receive support with daily activities such as cooking and housekeeping throughout their lives. Other adults with Down syndrome are able to master these skills.

Similarly, there is great variability in the residential environments used by adults with Down syndrome. Many adults with Down syndrome continue to live at home throughout their adult lives, reflecting the family's preference and that of the adult with Down syndrome. Other individuals move to their own apartments, a shared apartment, or a community residence, where space is shared with three or four other adults with disabilities. In each environment, varying degrees of support and supervision may be needed.

Adults with Down syndrome who live independently may have family members or a professional staff person to be sure that they are doing their shopping, sustaining prompt attendance at work, and keeping their medical appointments. For individuals who live at home, the parents often fill these roles. For individuals who live at home, the parents often fill these roles. For individuals who live in other residential environments, paid individuals may perform these roles; however, family members often are quite involved in the daily monitoring of the individual's well-being. Indeed, our research indicates that parents play an active role even after their child with Down syndrome moves to another residential environment. They have frequent (for many families, at least weekly) contact with their child, often continue to assist him with medical care and money management, and maintain strong and warm bonds of affection.
We have learned that whether a person with Down syndrome continues to live at home as an adult depends less on his level of independence and more on the choices and values of his family. Of course, this generalization is tempered when wither the parent of the adult with Down syndrome has health concerns that require more extensive support than can be managed at home.

Parents of earlier generation had to make the difficult choice between raising their child with Down syndrome at home or releasing their child to institutional care as was commonly recommended in the 1960's and 1970's. Most parents decided to raise their children at home even though they knew that few support services were available. For many parents, there was a strong sense of responsibility to meet their child's needs for as long as possible. As one mother said in a research interview, "We were told to institutionalize him. I couldn't see it. I'd worry about his care, so we kept him at home." Another mother remarked, "I didn't want him in any institution. I wanted him to have a normal life with a family."

Prior to the existence of organized family support services, parents did the best they could with what they had and did a remarkable job of integrating their sons and daughters into their communities; first, in their immediate and extended families, and second, in their places of worship and in their neighborhoods. Parents of children with Down syndrome have spend a lifetime developing strong, natural support systems in their communities. For example, the owner of the neighborhood convenience store always helps one family's son with Down syndrome purchase the items he need when he makes his bi-weekly shopping trip. A public transit bus driver makes sure one family's daughter gets off at the right stop each day when she goes to work. For other families, aunts and uncles as well as other adult children who live nearby provide a family and social connection for the individual with Down syndrome.
Many adults with Down syndrome recognize the richness of life with their families and do not want to move away from home. They enjoy the daily company of family members and friends whom they have known their entire lives, and their role in daily family life is such that they choose to remain at home.

In one large family, the son with Down syndrome cares for the house while his parents travel. He knows he can call one of his brothers or sisters who live in nearby towns if he needs anything. He has worked in a competitive job in his community for more than 5 years and receives full benefits and full protection through a union. The mainstay of his social life is his family, including a host of in-laws, nieces, and nephews. There is always someone inviting him out to dinner or to a birthday celebration. He is often asked to babysit. Like most adults in their middle years, he contributes as much to his family as he receives from them.

As yard work, housework, and running errands becomes more difficult for older parents, they begin to depend on their sons and daughters for help. With regard to her son with Down syndrome, one mother told us, "He's a blessing. I'm alone now and can't do my housework. He's doing things today I never dreamed he would do. I'm so very proud of him. He has many skills and is helpful around the house."

For one family, having a son with Down syndrome live at home has made it possible for the parents to continue to live at home in their older years. The son is in his 50s and his father is 90. The son does the cooking, cleaning, and small errands. He marks the calendar with important dates and keeps the grocery list. His father once said, "I don't know what I would do without him." When his mother was ill several years ago, he and his father, with the help of visiting nurses, cared for her at home until she died. The father said that without the help of his son, it would have been very difficult for his wife to spend her last months at home. The son takes great pride in the role he has in his family. He said, "I know people who live in apartments, but this is my home, and my dad needs me." He also has an active social life. He is a 30-year member of his social club and active in his church and other areas of his community.

As parents grow older and adults with Down syndrome become senior citizens themselves, it becomes increasingly difficult for parents to meet the daily needs of their child. Health problems may limit the parents' driving to daytime only, forcing the individual with Down syndrome to miss evening social activities. It may become more difficult for parents to perform ordinary responsibilities, such as making sure their child gets to work each day and to medical appointments. As the adult with Down syndrome grows older, she may also have health problems that limit her own independence. Although the adult with Down syndrome and her parents may prefer that she live at home, the time will come when it is no longer possible for parents to be the primary caregivers. For some families, a move away from parents may become necessary earlier than the family wishes or expects. In too many instances, a parent is confronted with the reality of substantial waiting lists fro publicly funded residential services, which are circumvented only when an emergency precipitates a placement. We have found that adding the adult child's name to a waiting list is an emotionally difficult but crucial step in future planning and that the benefits to families who plan ahead include smoother transitions and greater skill acquisition for their sons or daughters with Down syndrome.

For many adults with Down syndrome, having a home of their own is a lifelong dream. It is important to them to leave home and establish separate adult lives, just as their brothers and sisters do. If the transition from the parental home to the new living arrangement is well planned and the needed support and supervision are provided, adults with Down syndrome can thrive living in their "own places." Once they have a home of their own, many adults with Down syndrome learn to do things they never did at home, such as doing their own laundry, cooking their own meals, and traveling independently to work each day. One mother told us, "He feels that he is independent and can get along without his parents. He's proud that he's living on his own.

Eventually, all families, regardless of where the adult with Down syndrome lives, must face the realization that they will not be available indefinitely to oversee the care and support of their adult child and with other members of their family, they must discuss the future, including where their child will live and who will participate in her care. Parents should discuss and work out their expectation with their typical children will be involved in providing support to the adult with Down syndrome. We have found, for example, that in most families, at least one sibling anticipates a future legal, financial, or even residential role on behalf of his or her sibling with Down syndrome. Although parents often profess that they don't want to "burden" their other children, many siblings feel that this is a natural, expected, and valued part of their future. Indeed, we have found that siblings who have a close relationship with their brother or sister with a disability have greater psychological well-being than those who have a more distant relationship. Therefore, parents' fears of "burdening" their other children may be counterproductive for the well-being of the whole family.

Parents of a child with Down syndrome should begin to think about the future when their child is young. As educational goals are developed each year, parents should think about how those goals will help the child achieve future goals. As the child with Down syndrome acquires new skills, develops his own personality and interests, and begins to express his own aspirations, parents may have to change their own ideas of the future. Keeping open the lines of communication about the future from the very beginning of the child's life is very important. Parents have many opportunities during the childhood years to discuss "growing up" and what that means. For example, when an older brother or sister goes away to camp or off to college, parents can take advantage of the opportunity to talk with their son or daughter about what it means to live somewhere other than at home.

No matter where adults with Down syndrome live, they need to be the primary caregivers. For some families, a move away from parents may become necessary earlier than the family wishes or expects. In too many instances, a parent is confronted with the reality of substantial waiting lists for publicly funded residential services, which are circumvented only when an emergency precipitates a placement. We have found that adding the adult child's name to a waiting list is an emotionally difficult but crucial step in future planning and that the benefits to families who plan ahead include smoother transition and greater skill acquisition for their sons or daughters with Down syndrome.

1.    Support for basic needs: In addition to the basic needs for a comfortable home and nutritious food, the adult with Down syndrome must have access to high-quality medical care and transportation so that he can get to and from work, social activities, medical appointments, and other locations.
2.    The opportunity to make choices: All adults make choices on a daily basis, from what to wear to work to where to spend the weekend. Adults with Down syndrome must be supported in their desire to make their own choices.
3.    Interesting, life-sustaining work in which the adult with Down syndrome grows as an individual: The person may work in retail sales or in a restaurant or may hold a clerical position. Wherever she works, the person with Down syndrome must have opportunities and individual support to learn new skills. In many areas of the United States, post-secondary education is now available to adults with Down syndrome.
4.    Opportunities for an active social life: The adult with Down syndrome may develop close friendship with several people, may have just one close friend, or may always need structured activities in which he can mingle with others in a group. Whatever the individual's needs or interests, the adult with Down syndrome needs to be connected to family and friends throughout his adult life.
 
Older parents of adults with Down syndrome have witnessed an enormous change in public attitudes toward individuals with disabilities, as well as an expansion of support services for families and employment opportunities for adults with disabilities Many of today's older parents were pioneers, creating the services and opportunities that now are available across the United States. They are fiercely proud of their accomplishments in rearing a child with Down syndrome to adulthood, engagingly open about the difficulties they have weathered and mastered, and warmly expressive about the mixture of gratification and challenges that having a child with Down syndrome has brought to them and other family members. As one mother said, "I wouldn't have missed it for the world."

Source:  ©1995-2003 National Down Syndrome Society, (800) 221-4602, www.ndss.org