Issues for families with children with Down syndrome

Sue Buckley

Drawing on available research and personal experience, the experience of families with children with Down syndrome is explored with the aim of identifying the strengths and positive coping strategies used by most families. The evidence shows that almost all families love and value their child with Down syndrome and list the benefits they have gained as a family from raising this special child. Some two-thirds of families lead ordinary lives, with no long term negative effects for other members of the family. These families do experience extra demands and extra stress but they find the resources to cope successfully. Research has identified some of the strategies that families use to cope successfully. One third of families have a more difficult time and the reasons that they experience more stress have been identified. Knowing the causes of additional stress allows families and service providers to pinpoint their difficulties and offer appropriate support and services. Knowing the successful strategies that reduce stress is equally important in helping families to use all the positive resources that they have available to them. Families are encouraged to evaluate their own situation using this information and to identify any additional resources that they could use. Practitioners are encouraged to use the information to improve their practice and to focus on family centred ways of working, recognising that the family unit is the child’s main resource throughout his or her life-time.

Buckley SJ. Issues for families with children with Down syndrome. Down Syndrome Issues and Information. 2002.

doi:10.3104/9781903806265


Introduction

The primary aim of this book is to provide practical guidance to families which will support them in their task of bringing up a child with Down syndrome. In many ways, this may be the most important book in this series. By sharing the experiences of being a parent, of working with many families, the findings of research into family functioning and the specific knowledge available on families with children with Down syndrome, the aim is to increase the confidence, the coping strategies and the strengths of families, particularly in the early years of their children's lives when they often feel most vulnerable.

The family is a child's most important resource - this is true for all children including those with Down syndrome. The focus of services and parent support organisations should be on strengthening and supporting the families of children with Down syndrome, even when they are offering services which may seem to have the primary aim of aiding the child's development. Changes in the child's development and behaviour will come about as a result of the quality of daily interactions and routines within the family, and therefore teaching activities or behaviour management strategies will only be maximally effective if professionals actually transfer their skills and knowledge to parents. In addition, the family's right to retain its privacy and parents rights to be the main decision makers on behalf of their children should always be respected. Indeed, most parents are their child's best advocate and the history of the past half century has demonstrated that the main advocates for human rights, healthcare, social inclusion and education for children with disabilities have been parents and parent organisations.

Parenting is both a rewarding and a challenging task for most parents, and being the parent of a child with a disability adds more challenges and possibly more rewards as parents celebrate achievements that are taken for granted for typically developing children. Until recently, professionals and researchers have focused on the increased stress and the potential negative effects of bringing up a child with a disability in the family. However, an increasing body of research is contradicting this view and highlighting the fact that most families cope well, lead ordinary family lives and report benefits for the whole family. These studies do not minimise the additional demands that families have had to cope with, but they demonstrate that most people have resilience in the face of life demands and that they find the resources to cope effectively with the challenges of unexpected life events such as the birth of a baby with a disability.

However, not all families have the practical or personal resources to adjust and cope, and some children are more demanding than others. Their lives are negatively affected by the extra demands. The findings of some research studies may enable families who are vulnerable and need more community and professional support to be identified. The growing body of information on effective coping strategies and on likely causes of vulnerability can be helpful to families, providing some understanding of the issues and helping them to cope positively with their situation.

There can be no simple models for the family; every family is different and families change over time. A family is a group in which the characteristics and behaviour of each member affects the others in the group, and the ways in which members interact together may change over time. The temperaments and characteristics of children influence the parenting behaviours of their parents right from infancy and, in turn, parenting behaviours influence the behaviour and development of children. The family can be described as a dynamic system, i.e. changing over time and with the addition of new members, and the nature of parent/child influences can be described as transactional, i.e. child and parent influence each other. It follows that there is no such thing as the family of a child with Down syndrome every family is essentially unique.

However, family research has identified characteristics of families, and how families adjust to life stresses, which can provide a framework for considering the ways in which families can increase their resilience to stresses and function in ways that are positive for all family members. Therefore, understanding families is the focus of the first section, followed by an overview of research studies which have looked at the effect of the added demands on families when a child has Down syndrome, as well as the small number of studies which have looked at family influences on the development of the child with Down syndrome.

The third section discusses the implications of current knowledge for parents and families. Most work has focused on the needs and coping strategies of parents, but some studies have addressed the needs and contributions of brothers and sisters, and one has focused on grandparents. The final section discusses the implications for service providers, with guidelines for good practice, and stresses the need for all practitioners to consider both the negative and positive impact that they may have on families.