Down Syndrome Today Winter 1993, Vol. 2, No. 4, p. 22-3 (Part 1) & Spring 1993, Vol. 3, No. 1 (Part 2) Darlynne A. Devenny, Ph.D.

Printed with the permission of Darlynne A. Devenny, Ph.D. New York State Institute for Basic Research in Developmental Disabilities 1050 Forest Hill Road Staten Island, NY 10314

     One of the major goals of parenting is to protect a child from harm and, thereby, promote survival. Part of this process involves teaching the child the social and adaptive skills required for independence while maintaining interconnectedness with others. The child is an active participant in this process, learning some skills with greater ease than others, and through his or her growth and development providing satisfaction to parents.
     Everyone agrees that parenting is difficult in even the most ideal of circumstances. It involves tremendous amounts of time and emotional energy, and yet, many of us take on this responsibility with eagerness.
     Parenting is not just difficult: it is also stressful. Stress can have an impact on parenting by significantly contributing to irritability, depression, marital problems and low self-esteem. The effectiveness with which parents are able to cope with this stress has significant implications not only for them, but for their child, also.
     Many researchers have worked to identify sources of stress in child-rearing and some have studied sources related to raising a child with mental retardation in particular. I will try to summarize some of their work.
     My purpose in discussing stress is to help parents recognize some of the sources within their own families. Sources of stress differ between families; they differ for mother and father and for the single parent. Also, sources of stress change with the composition of the family and with the age and developmental stage of the child with the developmental disability.
     Not all issues I discuss will be pertinent to every family, but sometimes by thinking about stress in an orderly way it is possible to develop strategies for both stress resolution and effective coping. Since this is such an important topic I will present the material in two parts. This first part will discuss how the characteristics of a child with Down syndrome can impact on the level of stress within the family.
     The second part of this article will be in the next issue of Down Syndrome Today. In it I will discuss the characteristics of the family in relation to stress and suggest some mechanisms for coping with stress.

CHILD CHARACTERISTICS
Level of Abilities
     Although Down syndrome is very frequently diagnosed at or soon after birth, it is impossible to predict at that time the level of achievement the child will eventually reach. With very few exceptions, Down syndrome results in mental retardation but the level of impairment of individuals ranges from mild to profound.
     One study reported that parents of higher functioning children with mental retardation expressed less stress about their child's physical limitations and less concern about life-span care than parents of lower functioning children. Children who are higher functioning will develop faster and achieve independence in toileting, eating and dressing earlier. As each of these developmental milestones is achieved the anxiety over whether the child will achieve that milestone is reduced. In addition, higher functioning children are less likely to be disruptive to a family because they have more individual resources for flexibly adapting to family needs.
     In recent years the expectation for children with Down syndrome to achieve higher functioning has increased dramatically. For many parents the effort required to realize the potential for their child with Down syndrome can lead to stress, as they try to meet all the demands for educational, therapeutic and recreational activities. Further, a significant number of children with Down syndrome will make very slow progress even with a supportive environment and intensive intervention. For the parents of these children, the disappointment and frustration of their child's development also can be stressful.

Age of Child
     In one study mothers of children with developmental delays reported that middle childhood (6-12 years) was more stressful than either preschool or adolescence. During middle childhood there are increased demands for the child to develop independence while the demands on the primary caretaker to provide constant vigilance and assistance in toileting, dressing, and eating may still be present. Without family and community support, parent exhaustion becomes a definite possibility. With older adolescent children many of the care-taking tasks may have been transferred to resources outside the family.
     In even the best informed families, parents often entertain unrealistic expectations for their child. This reaching for higher goals can be helpful in freeing the child from restrictions which may limit opportunity. It can also put stress on the family to meet these goals. This factor can be especially significant during the childhood years when the child's level of abilities is still largely unknown. By the time a child with Down syndrome reaches adolescence or adulthood, families may have readjusted their expectations to better represent the abilities of the individual.
     The age of the child with Down syndrome in relation to other family members is also important. Typically, a child with mental retardation, regardless of their chronological age, is relegated to the social status of the "youngest" once their siblings pass his or her developmental level. With a child in the household who is viewed as perpetually young, parents may feel that they will never be able to progress beyond child-rearing to address their own, personal goals. In addition, the prolonged demands for involvement in child-rearing can be particularly wearing on older parents of a child with Down syndrome.

Medical Problems
     Early infancy is a particularly anxious time for parents of a child with Down syndrome because it is during infancy that many of the associated life-threatening conditions are identified and treated. Some conditions, such as recurrent ear infections, persist throughout childhood. Stress for parents can occur not just around a time of crisis, but can also accompany the daily demands for coping with persistent medical conditions.
     In managing complicated educational and medical issues, parents frequently become the advocates for their children. Parents are often placed in the position of evaluating the benefits of a program for their child. The responsibility for decisions about care may be difficult for parents because they feel they are not adequately trained.

Behavior of the Child
     Parents of children with behavior problems that are difficult to ameliorate, such as hyperactivity, self-abusiveness, and self-stimulatory behaviors, report higher levels of stress. Many of these serious behavior problems are linked to the same causes as the mental retardation of the individual and are not the result of poor judgment in child-rearing. Serious behavior problems are not characteristic of people with Down syndrome, but when they occur they can be a major source of stress.
     Fortunately, most individuals with Down syndrome are socially responsive. Not only does this provide the parent with personal satisfaction, but social approval can be an effective tool in modifying some unacceptable behaviors.

Part 2

     In Part 1 of this article which appeared in the Winter issue of Down Syndrome Today, I introduced the topic of stress for parents by saying that not all families experience stress over the same issues. Families are a dynamic unit which changes over time. The issues which cause stress in family life also change. Age of family members, composition of the family, family resources, and individual satisfaction are a few of the many factors which contribute to family dynamics. Indeed, coping with stress, itself, changes a family's dynamics.
     By describing some of the possible sources of stress I hope to provide a framework whereby parents can think about stress within their own situation. I have chosen only a few frequently mentioned sources of stress but there are many more. Similarly, there are many techniques for coping with stress; some are adaptive (that is, they promote healthy family life) and others are destructive to the family or individuals within the family. Part of working to preserve every family unit involves working to resolve stress.
     In Part 1 of this article I described some sources of stress which are related to the characteristics of the child with a developmental disability. I will now identify some of the characteristics of the family which contribute to stress.

PARENT CHARACTERISTICS
Parenting Satisfaction
     Parents want to feel they are meeting the needs of their children. They find satisfaction in the progress of their child. They also need to feel they have a role in shaping the development of their child.
     When a child has special needs there is a tendency to shift many of the important decisions to the 'experts'. Decisions about when to begin intervention and which therapies to provide are frequently determined by a team of professionals. Decisions about educational placement are given to the educational system.
     Although medical and educational institutions are better than they have ever been in providing supportive intervention for children with Down syndrome, the delivery of these services becomes a source of stress when parents either do not agree with or trust the decisions of experts, are unable to meet the demands for service delivery, or feel they have a reduced role in the decision making process. For some parents, this relinquishing of control can result in feelings of inadequacy as a parent and of anger at the delivery system.

Personal Issues
     Parents of children with a developmental disability frequently have negative feelings of guilt, anger, disappointment, and self-pity. These can coincide with feelings of love, gratitude, and pride. Having feelings which seem to be in apparent conflict can be personally stressful.
     For many parents of a child with Down syndrome, the early months are occupied with understanding the implications of the diagnosis, coping with early medical problems, and initiating early infant stimulation programs. There is little time or energy for parents to cope with their own feelings. These feelings can return at later (and sometimes unexpected) times, even in individuals who at other times genuinely celebrate their good fortune in having their special child.
     A successful family provides emotional support for all the members of the family. However, no family can address all of the individual needs of every member. Having to look outside the family for support can itself be stressful for people who are very independent and self-reliant. Both children and parents at times need to look outside the family for sources of support. Sometimes a parent or sibling finds it easier to express negative feelings outside the family. This should not be taken as a sign of betrayal. It is seeking validation of a feeling which can allow the individual to return to the family with renewed personal resources.

Economic Support
     The demands for providing for basic needs are common to all families. The demands on the family resources, however, change depending on the ages of the children. Although it is becoming increasingly more common for both parents to share financial responsibility for the family, fathers continue to report this responsibility as an important source of stress.
     Economics becomes a source of stress when there is not enough money for the needs of the family. When one of the children in the family has Down syndrome there is likely to be increased demands on the financial resources of the family to pay for medical care, additional therapies, babysitters and participation in special programs. These demands can persist throughout adolescence and sometimes into adulthood. At the same time, the involvement of parents in addressing the special needs of a child reduces the amount of time and energy available to them for increasing income to meet these needs.

Managing Resources
     Each person should share in the attention and concern of all family members. This sometimes entails sacrifice and leaving some personal needs unmet. The child with Down syndrome is entitled to be a full participating member of the family and, therefore, should be required to share the family resources, not monopolize them.
     In addition, when a family is in a stressful period (for instance, when there is a death of a close friend or relative), the child with Down syndrome should share in the stress and be supported in learning to cope within his or her ability.

COPING WITH STRESS
     There are many ways to cope with stress but some are more adaptive than others. As I emphasized in the introduction to both Parts 1 and 2, there are many differences between families in their vulnerability to stress. Similarly, there are many ways to cope with stress. I mention here only three areas to consider.
     One consistent finding of research is that it is easier to cope with the stress of parenting if there is marital stability and/or a supportive social network. Some parents of children with developmental disabilities feel isolated. Maintaining and establishing meaningful social relationships requires effort but children benefit indirectly because parents with less stress are more effective in their child-rearing. There are many opportunities for social net-working among parents of children with similar disabilities to share their questions and concerns. It is also important for the personal development of all family members to maintain social contacts which do not focus on the child in the family with Down syndrome.
     Another way to cope with stress is through information seeking. This can take the form of learning about Down syndrome, in general, or by sharing common experiences with other parents. Parent support groups help families to focus on important issues. They can also provide role models and can help parents understand the next developmental stage and approach it with more preparedness than dread. One group, the Association for the Care of Children's Health (7910 Woodmont Ave., Bethesda, MD 20814), assists parents of children with developmental disabilities by providing needed information about the health care system. Two other sources for information on Down syndrome are the National Down Syndrome Society (666 Broadway, NY, 10012) and the National Association for Down Syndrome (PO Box 4542, Oak Brook, IL, 60522).
     Finally, expressing emotions in socially appropriate contexts is also a way to reduce stress. The individual needs of parents or siblings should not be neglected in the urgency of providing needed services and support for the individual with Down syndrome. While this is not always possible, at least attempting to balance your needs with those of each member of your family can help in achieving a greater sense of normalization of, and control over, your life.
     Parenting any child is stressful, and most parents of children with Down syndrome know all too well about coping with stress. Practically any one of you could write your own story and other parents would find it familiar. In trying to deal with stress it is often difficult to see beyond today and maybe tomorrow. My purpose in writing these articles is to point out that you are not alone in experiencing stress over small and large issues of child-rearing. Sources of immediate stress will pass and probably be resolved satisfactorily. But development is characterized by change and as you and your child develop, new sources of stress will emerge. Knowing how to identify personal sources of stress, and coping with them effectively, has long term beneficial consequences. Your successful experiences in coping will likely increase your confidence and resources and prepare you for future experiences.