Family

[TODO: summary] …

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.

## Understanding families

Families and communities

The primary family unit discussed here consists of parents and children. There will be wide individual variation between families, as some will be two-parent, some one-parent families, and the numbers and ages of children and the sizes of families will vary. Some families will have extended families with grandparents or aunts, uncles and cousins living near, while other families will be isolated from their relatives. The role of mothers and fathers within families will vary according to the working demands on either or both parents and according to the ethnic or religious background of the family. In addition families are embedded in friendship networks and local communities, and are influenced by the country in which they live. In order to consider the way in which a family functions and the resources that a family can draw on, the influences and resources are illustrated in a diagrammatic form in Figure 1. This has been illustrated with the issue of disability in mind, as the beliefs and attitudes with regard to disability will influence what happens in each of the spheres identified.

###### Figure 1. The family in context - influences on family life

Family characteristics

The characteristics of individual families will influence the family environment and resources. Families may have one or two parents and, while having two parents in a positive relationship gives families benefits, with two adults to share the demands of parenting, a happy one-parent family will be a more positive environment for children than an unhappy two-parent family.

Families will vary in the numbers and relative ages of children, and in the position of the child with Down syndrome in the family. Here again, the advantages of a particular family make-up will vary. When a child with Down syndrome is born after other children, parents may have the benefit of being more confident and experienced parents, and older children can help in the care-taking demands as well as acting as playmates and role models for the child. If the child with Down syndrome is the first child, they may benefit from the only child situation as, like all other only children, they will have undivided adult attention from parents, who may have more time for teaching activities, educational outings and community activities. When a younger brother or sister arrives (siblings in academic jargon), the child with Down syndrome is likely to benefit from having a playmate after a few years. If the age gap is quite small the sibling will probably help to encourage speech and language development and play skills for their older brother or sister. Brothers and sisters will usually be life-time friends, advocates and supporters for the child with Down syndrome and the benefits of sibling relationships can be seen whatever the relative ages of children, if positive relationships are encouraged.

The relationships between parents and children matter, and these will vary within families. The extent to which parents share parenting responsibilities and the extent of the involvement of fathers with their children influence family environments. However, cultural expectations need to be considered, as the expected roles of mothers and fathers will vary in different communities.

The physical and financial resources available to families will influence their parenting abilities. Poor housing and poverty put any family at a disadvantage when trying to create a positive environment for children to grow up in and when managing the demands of parenting.

The extended family

The family unit will be influenced by the availability and support offered by their extended family. Usually, having members of the extended family nearby is a significant benefit. They can provide both emotional and practical support for parents as well as providing children with an increased range of close relationships. Having grandparents or aunts and uncles on hand to baby-sit or to share in the care of children is usually a great help to families. Even when the extended family members are not geographically close, they can be an important source of emotional support. Of course, if relationships within the extended family are not good, then there will not be these benefits. Being a grandparent can be a delicate matter at times. For example, sometimes grandparents can be too keen to offer advice and may be critical of their children’s parenting skills. Grandparents may be very anxious when a baby with a disability is born, as they are concerned for the baby and they are also concerned for the parents.

When a child is born with a disability, the attitudes and reactions of the extended family can be an important influence in helping the parents of the child to adjust. When grandparents, aunts and uncles have positive attitudes this is a great source of support, but when any of them have difficulty in accepting the child, this can add to the stress experienced by parents.

Close friends

Parents usually have a number of close friends, including friends made through work, the neighbourhood or community activities. These friends may also be a source of both emotional and practical help. In particular, friendships with other parents of children in the same age range usually play an important part in the lives of parents. As discussed with regard to family members, the attitudes and reactions of close friends to the news that a baby has been born with Down syndrome will influence the way in which the child’s parents cope. When a child has a disability, new friendships with other parents whose children have the same or a similar disability can also be a very significant source of support and the role of parent support groups is developed later (see the ’Parent support groups’ section).

The local community

Families live within local communities, and the resources of these communities play an important part in the lives of parents and their children. The quality and availability of local health, education and social service provision for children will influence the families in the area, as will the availability of clubs and community activities. For a child with a disability, the services available for specific support, such as early intervention and respite care services, can make a significant difference to the life of the child and their family. In addition, the degree to which the ordinary childhood facilities are inclusive and welcome the child with a disability will influence family life.

The country and culture

Roberta growing up in the 1970s

The family will be resident in a particular country and the services provided for children and families in that country will influence family life. The legislation providing for children’s rights, healthcare, education and social support will vary from country to country. The legislation providing for the rights and services for children with disabilities will reflect the beliefs and attitudes with regard to disability in that particular society. The attitudes and beliefs prevalent at the societal level will influence the attitudes in the communities and families in that society.

The author has experienced the change in attitudes towards disability in the UK over almost 40 years in a professional and personal capacity. Forty years ago, society had rather negative attitudes towards disability. Professionals had very low expectations for the development and community involvement of children and adults with Down syndrome. Parents were advised to put their children in institutions, as they would be a burden for the whole family there was no right to education, no community services, and many people believed that it was a disgrace to have a child with a disability born into the family. The author’s adopted daughter with Down syndrome, Roberta, was left in hospital by her parents in 1969, largely because her maternal grandparents did not want anyone to know she existed and certainly did not want her to be raised within their family. This was not an isolated reaction - some 10% of babies with Down syndrome were left in hospitals after the birth at that time. The author also knew a family who moved to a new neighbourhood rather than tell their existing friends and neighbours that they had a baby with Down syndrome. These social attitudes would have a very powerful negative affect on the way parents appraised and adjusted to their situation and how they felt about their baby. When Roberta was born she had no right to education, though this changed by the time she went to school following legislation in 1970. Roberta received no preschool services and she was not welcome in any community activities for children, except at the local church.

In the UK, attitudes and knowledge have improved very considerably, and most parents of a new baby with Down syndrome are given positive messages about their baby’s future by medical professionals. The change in community attitudes is reflected in the range of services that have been developed to support parents and children, such as early intervention, therapy services and respite care. All children have a right to education and most children with Down syndrome are now starting school in inclusive schools with the other children in their neighbourhood. Most clubs and community activities now welcome children with disabilities. In the authors experience, this change in social beliefs and attitudes throughout the community has made it much easier for parents and other family members to adjust to the news that their baby has Down syndrome.

In considering how individual families will adjust, it is clearly important to take account of the beliefs and attitudes towards disability in their culture and within their religious community. Some communities have not progressed as far as others in changing negative beliefs and negative attitudes and parents, and families will be influenced profoundly by these views.

Life stages and life events

In addition to stressing that each family has to be seen as individual, with strengths and weaknesses and embedded in their own networks and communities, it is important to recognise that families may change over time and that the demands within families may change at different life stages as the child with a disability gets older.

It is not appropriate to try to classify families as resilient and coping, or as vulnerable and needing support, on the assumption that this is a permanent set of characteristics. There may be some factors that do continue for individual families, such as poverty or poor housing, but many factors may change. For example, a stable and resilient family may be affected by life events such as the death of a grandparent who had been a significant source of support, or by the loss of employment. Less dramatic changes such as the birth of another child or a move of house may require adjustment, which will be helped by the awareness that coping strategies need to be considered, such as more practical help in the house or the establishment of new social networks.

Even when externally imposed life events do not affect families, adjustment to children’s difficulties and needs is a life-long process, and transition points in children’s lives can raise new issues.

The process of adjustment to the news that a baby has a disability is usually greatest at the time of the diagnosis. Most parents of babies with Down syndrome know the diagnosis within hours or days of the birth, and the next weeks and months are a period of considerable emotional distress and adjustment. Most parents do make positive adjustments and feel love and attachment for the baby, but the time this takes can vary from days to months. Life then looks brighter and the much loved baby’s achievements can be celebrated. Parents find information on Down syndrome, meet other families and find support services in their communities and begin to feel optimistic for their child and the future. They evaluate their child’s progress against the expectations for children with Down syndrome and feel positive about their progress. However, transition points in the child’s life may be particularly stressful, for example starting school, when the child may be assessed against the norms for typical development and parents are confronted with the extent of their child’s delays, rather than their achievements. Parents are also confronted by the need to consider how their child is able to cope with the usual social and learning expectations of school. Other transition points may be reaching adolescence, leaving school and leaving home.

## What does research tell us about families with children with Down syndrome?

There have been a number of useful studies of the experiences of families with children with Down syndrome in recent years, particularly in Australia,[1-7] the USA[8-17] and the UK.[18-32] These studies have moved on from simply looking for negative effects and have taken more sophisticated approaches to involving families in their studies and trying to capture a realistic view of the experiences of families.

The range and types of research

The largest and most detailed study is the longitudinal study of families with children with Down syndrome which has been ongoing in Manchester, UK, since 1973.[18-24] This research programme was established by Cliff Cunningham, and he and his colleagues are still working with many of the families and the young adults with Down syndrome to continue to document their experiences. Their work has looked at both the influence of caring for a child with Down syndrome on the life of the family and the influence of family environments and parenting strategies on the development and progress of the child with Down syndrome. The Manchester studies have mainly investigated the variation in family experiences within a large group of families of children with Down syndrome. They have been able to ask if some families fare better than others and, if so, why? Importantly, they have also been able to see if families continue to do well or to experience stress over time, as they looked at families experiences at two points five years apart.

Other studies have compared the experiences of families with a child with Down syndrome with the experiences of other families with similar numbers of children and similar family characteristics, but not a child with a disability.[e.g. TODO: references 4,TODO: references 6,TODO: references 16,TODO: references 25] These studies are important as they allow us to identify the possible differences associated with caring for a child with Down syndrome. Parenting is demanding and many families of young children find parenting stressful at times is it actually any different if one child has Down syndrome and, if so, how?

Some studies have focused on the experience of brothers and sisters of children with Down syndrome.[1-4] Most studies have assessed the experience of mothers only but some have included fathers[TODO: references 27,TODO: references 28] and found that parents do not always have the same views of their families and the issues which cause stress! The needs of fathers have received much less attention than the needs of mothers. A few studies have considered the needs of grandparents and the role that grandparents can play in supporting families or increasing family stress.[TODO: references 32]

Almost all research studies have used questionnaires completed by parents as their main method of data collection, though a few have used more open interview techniques to collect information from parents.[TODO: references 4,TODO: references 7,TODO: references 13,TODO: references 33]

Most research has focused on the childhood years and most studies have visited just once and, therefore, obtained a snapshot view of life at that time. One group of researchers in the US have been following the experiences of families with adult children with Down syndrome still living at home with increasingly ageing parents.[9-12] This study has highlighted many positive outcomes and we are beginning to be able to build a life span perspective of families caring for individuals with Down syndrome.

The majority of researchers have only worked with families from Western or European cultures, in the US, Australia and the UK. This means that the findings cannot be assumed to reflect the experiences of families with different cultural backgrounds. A few studies have looked at Chinese families[TODO: references 34] and Latino families but published information on experiences in cultures other than western ones is limited.[see TODO: references 35,TODO: references 36] We would expect some issues to be similar and some different, based on the current state of knowledge.

The main findings are positive

Most families do well. The main finding of research studies is normality the majority of families with children with Down syndrome lead ordinary lives. This does not mean that families do not have additional demands and challenges to cope with. It means that at least 65-70% of families find the resources to meet the additional needs of their child or adult with Down syndrome and lead happy and ordinary family lives themselves.[TODO: references 18,TODO: references 19] There are no more marriage breakdowns than in the rest of the population (and some indication that breakdown is less likely).

There is no evidence of ill effects for brothers and sisters in these families and both parents and brothers and sisters report benefits as well as extra demands.[29-31] As a group, families with children and adults with Down syndrome report less stress than families with children with similar levels of intellectual disabilities from other causes.[see TODO: references 37,TODO: references 8,TODO: references 25] There may be several reasons for this, such as early diagnosis and support, information which helps parents to predict the future, the sociable and warm nature of most children and adults with Down syndrome and fewer behaviour problems than in the comparison groups.[TODO: references 37]

There is some evidence that ageing parents who have adults with Down syndrome still living at home have better physical health and life satisfaction than ageing adults in the typical population.[9-12]

Where researchers have had comparison groups of families without a child with a disability, they find few differences on measures of resilience or family functioning,[4-6] even though mothers of children with Down syndrome report more parenting demands and more stresses.[TODO: references 16,TODO: references 25] This supports the view that most parents cope with the extra demands and stresses effectively and that the family does not suffer.

Some families have a hard time. If 65-70% of families are doing fine, there are 30-35% of families who are showing signs of considerable stress or distress, for a variety of reasons.[TODO: references 18,TODO: references 19] In these families, brothers, sisters and the child with Down syndrome are more likely to show behaviour difficulties. Parents are more likely to be struggling to cope and experiencing depression or health problems. All family relationships will be strained and family life affected. Some of the reasons that lead to families having a hard time have been identified and this information may be able to help parents, extended families and services to pinpoint their needs and ways to improve their situation if life is difficult to manage at present.

As the reader will see, almost all the factors that make families with children with Down syndrome vulnerable will make any family vulnerable and parenting more difficult. The same characteristics lead to family and child difficulties in the rest of the population.

Family strengths and weaknesses. Researchers have identified at least some of the factors that help families to cope well and some of the factors that make families vulnerable to stress.[38-40] These can be described as strengths factors which increase resilience, and weaknesses factors which increase vulnerability. Resilience is the term used to describe the family’s ability to cope in the face of life stresses. Resilience and vulnerability factors are discussed in the next section.

This information is particularly important for new families, those with preschool children and those who provide services and support in the early years, as the evidence from the Manchester studies and others suggest that the most vulnerable families will experience difficulties from the time the news is broken and, without help, will continue to experience difficulties affecting all members of the family.[TODO: references 19,TODO: references 20]

Resilience and vulnerability

The following section presents an overview of the factors found to influence the resilience of families from the available published research, in order to try to interpret what is known and to draw out the implications for families and for service providers. The main findings are illustrated in diagrammatic form in Figure 2 to try to help the reader to co-ordinate the findings and to see how they relate to a family’s experience. Putting them onto one diagram allows us to see the full picture. It is important to note that strengths and weaknesses are likely to be additive. Families with several vulnerability factors will be worse off than families with only one, and areas of strength may be able to compensate for areas of vulnerability. It is important to bear this in mind as we discuss each possible strength or weakness. On its own, one weakness may not put a family at risk, as other factors in the life of the family or support from services may compensate.

Figure 2. Influences on family resilience or vulnerability - from research findings

Key:  + indicates a factor likely to increase resilience         - indicates a factor likely to increase vulnerability ——————————————————————————————————————————————————————————————————————

It is also important to note that research studies have not assessed all the possible influences on families resilience or sources of stress. For example, the unconditional love that almost all parents feel for their child, and the way in which family members value the child is a major source of resilience. Advocating for their children’s needs leads many parents to report that they have discovered new strengths, made new and lasting friendships and that they have become more involved in their communities. These all have benefits for their lives, and increase their resilience in the face of other life events that are part of the life experience of most people. Parents often report that dealing with service providers is a major source of stress: these issues have not been well documented in the published research studies.

Research studies also report main differences between groups of families and they tend to conceal the range of individual differences within their group data. The research then leads to generalisations about families with a child with a disability. These may be helpful to alert us to important issues, but the reader is encouraged to remember that all families are different, with their own characteristics and ways of supporting each other, and that all families change and develop over time.

The individual characteristics of parents

Personalities. Certain personality characteristics seem to make individuals more vulnerable when faced with demanding life events. Individuals who score highly on measures of neuroticism or anxiety seem to be less able to cope in a positive and effective manner. Individuals with low self-esteem or self-confidence will be less likely to believe that they have the ability to cope. Individuals who are more extraverted, and those that have a strong sense of being in control of their lives (internal locus of control), manage stressful life events more effectively than individuals who are more introverted and tend to feel that what happens to them is outside their control (external locus of control). Personality characteristics may affect the different coping strategies that are used by parents. For example, at a time when a parent is anxious and has low self-esteem, they are unlikely to seek out social support or to develop active, problem solving strategies.

Coping strategies. Coping strategies are the ways in which individuals deal with stressful situations. In the family research, they have been divided into emotion focused and practically focused strategies. In the main, practical coping strategies seem to be positive and linked with resilience. These may be described as active problem solving strategies which include seeking information about Down syndrome and about services, benefits and support available to the family, meeting other parents and joining a support group, and making full use of family and community social support networks. Emotion focused strategies include wishful thinking (maybe things will get better), passive acceptance (this is my lot in life and I have to put up with it) and stoical thinking (making light of the issues without doing anything practical). Emotion focused coping is reported to lead to stress and vulnerability but this may be an oversimplification of the issues. The type of strategy that is positive may depend on whether it is possible to change a stressful situation or not, and the needs of parents at particular times.

Cognitive appraisal and adjustment. Researchers and parents have identified that the way in which we think and make sense of life events is an important part of the process of adjustment, and that adjustment takes time. The individual way in which we think about and interpret life events is an important part of coping positively or negatively and will also influence our feelings and emotions. The way in which we react to the news that our baby has Down syndrome will be influenced by the beliefs of our community and our individual beliefs. If we believe that the baby is a punishment for sin or a disgrace on the family, we will feel and think differently from someone who sees this as a chance occurrence which could happen to anyone and not an event to be ashamed of. If we are told that the baby will never make much progress and always be dependent, then we will find it hard to think positively about the future.

For all parents there will be a period of adjustment, since they had a set of expectations for their healthy baby which they now have to change to take account of the fact that their baby has Down syndrome. Some parents will find it easier to reconstruct their hopes for their child and their future than others, and this will be influenced by their underlying personality characteristics. It may also be influenced by their previous experience of coping with stressful life events.

To identify that evaluating the positive or negative effects of coping strategies are more complex than the researchers often indicate, we can consider some examples.

Optimism and hope are reported by parents as important and positive coping strategies and some of those hopes may later turn out to have been over-optimistic. However, at the time, that level of hope was essential to feeling able to cope. Is that hope, at that point, wishful thinking? If so, wishful thinking was a positive, rather than a negative strategy, at that time.

Similarly, when is acceptance helpful and part of positive cognitive adjustment (or coming to terms with the situation) because we have now made a realistic appraisal of our situation and determined what we can or cannot change? When is it passive acceptance and thought to be unhelpful?

When is active practical coping helpful and when is it not helpful? Most of the time it seems that it is a helpful way to go forward, but it will not be helpful if parents seek out practical therapy programmes which hold out false hope and place enormous strain on the resources of the family in terms of time and money. (This is more likely to happen when services have little to offer.)

Family characteristics

Marital relationships. The quality of the relationship between parents has been shown to be important. The way in which mothers feel supported emotionally in the relationship, the practical involvement of father in child care and in the decision making regarding the child are all important factors. Mothers have reported the importance of good father-child relationships when asked to judge how well they think that their family is functioning. Fathers also report that their relationship with their partner and the quality of their family life is important. Positive relationships between partners reduces the stress they experience.

Family cohesion and harmony. The quality of the relationships within the family, the emotional warmth, the care shared between family members and the ability to communicate effectively all influence family well-being. This has been identified from questionnaire measures and from interviews with mothers that allowed them to identify what was important without any leading questions from the interviewer. In cohesive families, there is generally a happy atmosphere, everyone is valued and respected, the achievements of each person are celebrated and the family enjoy shared activities and being together. In cohesive families, mothers, fathers and all family members report less stress.

Family resources

The practical and financial resources of families influence their ability to cope with the demands of parenting. Poor housing, poverty, lack of transport (a car) and unemployment all increase family vulnerability. The impact of these factors may be more stressful when one child has Down syndrome, as poverty and lack of transport may reduce the opportunities to access support groups and services. The lack of practical resources for laundry and adequate heating are also more significant.

Health

As might be expected, the physical and mental health of parents has been shown to influence family situations. It is important that parents are aware of their own needs and take care of themselves. In terms of mental health, a number of studies report increased levels of stress for both mothers and fathers in families with a child with Down syndrome sometimes using mental health measures such as depression questionnaires. However, these are usually small increases in stress and very few parents actually score in the clinically depressed range. Some studies suggest that different factors affect fathers and mothers. Mothers are more stressed by childcare issues and worries about how the family is functioning, while fathers are more worried about the financial and practical needs of the family. These findings are, of course, to be interpreted in the context of the family role expectations in the communities being studied.

Employment for mothers

Employment needs to be considered in more depth as the effects of unemployment for mothers and fathers may be different. For fathers, unemployment may lead to serious poverty for the family and all the usual negative consequences for the individual, undermining self-respect and fathers role in the family. For mothers, being unemployed and staying at home with children does not necessarily have negative effects as it may be the typical role for women in the community or seen as a positive choice.

However, for mothers of children with Down syndrome, employment outside the home has been shown in several studies to be a positive and protective factor. Working mothers report less stress and more life satisfaction despite the extra demands of work, child care and family. This beneficial effect of employment when coping with demanding life events has also been shown in studies of depression in women. Working outside the home provides social contacts and friends, a different role, a change of daily demands and an increase in income. Unfortunately fewer mothers of children with Down syndrome continue to work (56% compared to 76% of mothers without a disabled child in one study).[TODO: references 16] This is a finding with clear practical implications and one that many mothers may find reassuring if they wish to continue to work.

Child characteristics

Some children with Down syndrome may be more difficult to care for than others and place extra demands on all members of the family, especially parents. The reader will note that most of these characteristics may also be seen in children without disabilities and will also cause increased parenting demands for their families.

Health issues. The needs of children with acute illness or chronic illness, requiring hospitalisation or hospital visits and treatment will cause additional stress or demands within families. For example, if a child has a chronic heart problem, chronic bowel condition or childhood leukaemia, this will cause significant additional stress.

All children with Down syndrome have additional health needs and this leads to more hospital appointments and often more illness than that experienced by typically developing children. However, in the research studies, it is when the healthcare needs of the child with Down syndrome are more significant and serious than they are for the majority of children with Down syndrome that they increase the family’s vulnerability.

Temperament. The demands of children with hyperactive, excitable or difficult temperaments will be more difficult to manage than most other children with Down syndrome. Children with more difficult temperaments are more likely to have feeding, sleeping and behaviour difficulties and will be less likely to be able to occupy themselves. These children may be particularly demanding for first time parents to cope with.

Development. Families with children with Down syndrome who have more significantly delayed development, children with multiple difficulties (additional physical difficulties or brain damage) or children with autistic difficulties experience and report more stress. There is a wide range of individual differences between children with Down syndrome in rates of progress and degree of disability. Some 11% have significantly more delayed development and the families of these children may face many more parenting demands.

Behaviour difficulties. Families with children with Down syndrome who have persistent behaviour difficulties experience more stress. The evidence suggests that these families are as stressed as those with autistic children or children with other disabilities and similar levels of behaviour difficulty. They do not show the comparatively lower stress pattern evident for most families with children with Down syndrome.

The evidence also suggests that persistent and disruptive behaviour difficulties, while only seen in a minority of children, begin in the preschool years and continue during the school years. Therefore, intervention to help parents avoid these difficulties needs to be available in the preschool years.

Sleep. Families with children who have poor sleep patterns experience and report more stress. Sleep difficulties include settling problems, early waking and waking during the night. Night waking is reported as the most stressful as it results in broken sleep for both the child and the family. Studies also report a link between disturbed sleep and difficult daytime behaviour. Sleep difficulties usually start during the preschool years and parents should be alert to the risks of long term sleep problems and seek help in managing problems as soon as they begin.

Attachment. In families where parents have found it difficult to bond with the baby with Down syndrome, more stress and more behaviour difficulties are reported. Some parents do not find it easy to feel unconditional love for their baby with Down syndrome. They may struggle with conflicting feelings, predominantly negative, towards their child for many years. When this is the case, it may colour parents perceptions of the child and make it hard for them to feel positive about the future. They may be more inclined to dwell on the problems that their child presents than on the childs progress and achievements. The child in this situation will usually sense the negative feelings and be emotionally insecure. In the authors experience, this can lead to an increase in behaviour problems from the early years. Sometimes the effects of the childs insecurity are not fully expressed until adolescence, when they may express feelings by becoming aggressive or depressed.

Sources of support

Research suggests that the range of emotional and practical supports outside of the family influence family well-being. The range of such supports that an individual family or parent has will be influenced by the individual personalities and coping styles of parents. In other words, if parents are isolated then it is not enough to point out that more social networks will be helpful. The individual may not have the confidence to access these sources of support and may be uncomfortable relating to others in group support situations. Support for the individual parents personal needs will be helpful before they will be able to benefit from other social supports available in the local community. Seeking out social and practical support is generally described as helpful, without comparing the benefits of different sources of support. All the research on coping with stressful life events suggests that those who are socially isolated are more vulnerable and less likely to make positive adjustments.

Family and friends

The practical and emotional support provided by the extended family of grandparents, aunts and uncles can be a very positive source of support to parents and brother and sisters of children with Down syndrome. Equally, if grandparents cannot accept the baby and are pessimistic about the future then this will make the positive adjustment of parents more difficult. There is very little research on the role of grandparents but this does identify possible positive and negative effects. However, in the majority of families, the emotional and practical support provided by grandparents and other members of the extended family is usually a very important positive part of the family support network.

Social networks - church and community

The family’s existing networks of friends in the neighbourhood, at church, play schools, mother and toddler groups, and at clubs in the community can be a very positive source of support, provided that they are positive about the child with Down syndrome and welcome him or her into their homes or activities. This is illustrated by parents reports of the support of their church - some have found the church members a positive help, others have found their church community negative and unhelpful. The beliefs that people have about disability and Down syndrome will influence their attitudes and this will apply to family members, friends and contacts in shops or on public transport. Too often parents report that they have to educate those around them, including some service providers! However, most families do find positive support in their local communities and benefit from this support.

Parent support networks

Many families report the benefits of joining parent support groups or Down syndrome associations and meeting other families with children with Down syndrome. Some parents report that the most significant emotional and practical help that they received came from other parents. In the first months and weeks, parents often report that it was helpful to meet other families who have got over the shock and feel positive about their child and the future. It was also helpful to see that they and their other children are leading ordinary lives. In parent groups, parents benefit from the sense of mutual understanding and they benefit from the practical tips and advice shared by those with older or similar age children. Parent groups can be a strong voice for action when services or legislation needs to change. The emotional and practical support of other parents can be extremely valuable when parents are fighting for services on behalf of their child.

However, these benefits will only be felt if parents find understanding and support from a local group. For example, parents with children who have more significant difficulties do not always feel that Down syndrome groups meet their needs. The group may be focusing on teaching children to speak and to read and getting them into mainstream schools and these goals may not seem appropriate at all to the parent of the more delayed child.

Information

In the early days and months, one of the main things that parents seek is information. Part of the shock and emotional turmoil associated with getting the diagnosis is that it plunges parents into a world that they were not prepared for. Most parents feel that they know what to expect when parenting a healthy baby, but once they learn that the baby has Down syndrome they feel at a loss and sometimes as if they are no longer in control of their lives. Accurate information about the baby and young childs needs and expected progress, and the availability of local services is usually reassuring and enables parents to begin to feel less distressed, to feel that they will cope and to feel more able to adjust positively.

Information can come in many ways at the present time. It may be written information, website information or verbal information from parents or service providers. It should always be positive while being realistic everyone needs hope for the future. There are a number of studies which document that way in which the diagnosis is initially presented to parents affects their long-term adjustment. Information needs to identify the strengths of children with Down syndrome, the fact that they are children first and need to be a much loved member of the family in order to flourish, like any other child, that families mainly cope very well, that life goes on and that most families report the benefits of raising a child with a disability as well as the extra demands.

Services

Families in the communities where research studies have been carried out generally value the support that they have received from services, especially early support provided in the home. They particularly value services that provide them with practical and realistic strategies for dealing with difficulties.

However, parents value services when provided by professionals who value the child, respect the family, have good listening skills and are empathic, who are well informed and share their knowledge with parents in a positive and supportive manner.

In some studies, parents have reported that dealing with some of the professionals that they encounter because their child has a disability has been a major source of additional stress, rather than a source of support. The stress may be caused by the attitude of the professional and their way of working, or because parents have to fight with them to get the service that they want for their child. All too often, parents find that they know more about their child’s disability and current good practice than the professional and this identifies the importance of training programmes in services. All too often, professionals do not work in a family centred way, respecting the right of families to identify what help they need, what will work for them and the hopes they have for the future for their child. Many professionals do not respect the fact that the quality of life-time care of an individual with Down syndrome depends on their family support whether or not they leaves the family home. Parenting is a life long commitment for all parents the roles change with age but parents and brothers and sisters play important life long roles in most peoples lives. The main goal of services should be to strengthen families and this theme will be extended in the later sections for families and for service providers. Many professionals play minor and short-lived roles in the life of a person with a disability but wield too much power in decision making relative to their actual responsibility or ongoing commitment to the individuals.

Practical support - respite and benefits

Support for the everyday demands of caring for a child can make a vital difference to the lives of families, and these can be financial contributions or practical services that sometimes relieve the demands of caring.

Many studies identify the extra financial costs of raising a child with a disability. Some costs are associated with child care needs wearing nappies for longer and needing more changes of clothes, for example and the costs of travel to hospital appointments, therapy services or parent groups. A major issue is reduced family income because it is more difficult for mothers to return to work. Full-time work is often impossible because school times do not fit in. When children are in special schools, the school day is often short and mothers have to be available at transport times. Children with disabilities need supervision for longer and the breakfast or after school clubs available for other children of working parents rarely take children with disabilities. Many countries recognise this financial burden and provide disability benefits of various kinds.

These financial contributions are valued by families and lead to an improved quality of life but there is a possible pitfall. Disability benefits are intended to meet the extra costs for the individual with disability but it is easy for them to become absorbed as part of the total family income. This can lead to difficulties when a teenager or young adult has the opportunity to take a residential education or vocational training course or to leave home to live independently of the family. The family may be reluctant to allow the young person to move on because the disability benefits will move with the person. It may help to alert families to this issue when children are young and encourage them to think of the benefit as separate from the general family income. Similar problems can arise when the family car has been funded by a disability fund.

Practical support for caring is valued by families, when it provides some respite from the daily demands and allows family members time to do things that may be difficult to do with a child with a disability, such as visiting a museum with other children or even shopping. It may also allow parents to simply relax and rest, especially if a child has a high level of behaviour difficulty or care needs. Help in the home with sitting services, alternate family care, or respite care in a service facility can provide a life-line for families. There will also be benefits for the child as they will begin to feel safe away from home and gain friends and new social activities.

How families influence the development of children with Down syndrome

A small number of studies have looked at the progress of children with Down syndrome in relation to family characteristics and coping strategies. Like all children, the progress of children with Down syndrome is influenced by their family environment, and their educational and social opportunities, not just determined by their genetic makeup. Children with Down syndrome show the usual benefits of social class, with those in families with more resources and higher levels of parental education making better progress. They also show the same benefits of family position, with first and only children making better progress, presumably due to more individual adult attention.[TODO: references 29]

In the Manchester studies,[TODO: references 19,TODO: references 21,TODO: references 23,TODO: references 24] the findings indicate that progress in self-sufficiency (life skills) and practical skills were more influenced by family factors than academic progress. Higher self-sufficiency scores were achieved by children whose mothers used practical problem solving strategies and lower for those who tended to use wishful thinking, even after taking account of the effects of mental age on the children’s progress. As the children got older, the link between cognitive ability and life skills became weaker. Cognitive ability as measured by mental age predicted academic achievement but family factors and social opportunities had more influence on life skills.

After allowing for mental age and attentional difficulties, academic progress was better when mothers used practical and problem solving coping strategies to deal with child related problems, and worse in families where fathers tended towards an external locus of control, and therefore felt that they had little influence on events. Fathers active involvement with the child’s development and education has a positive effect on progress. (In an American study of families with a young child, fathers who were more involved in the child’s day to day care felt more competent in their parenting role and had a better relationship with their child.)[TODO: references 16]

There were links between family factors and persistent behaviour problems in children. Children with lower mental abilities, higher excitability scores, higher incidence of respiratory infections and lower self sufficiency scores were more likely to have difficult behaviour. However, when these factors are controlled for in the data analysis, behaviour difficulties were worse in families with poor family cohesion, poor parent-child relationships, in poor housing and with low social support. They were also worse when mothers used passive coping strategies and tended to have neurotic personalities, when fathers were unemployed and when the family was experiencing additional stressful life events. In other words, the way in which parents coped and the family was functioning influenced behaviour even when child characteristics have been taken into account.

Children in families with an active-recreational orientation, children with younger mothers and children with more siblings had wider social lives, even when child characteristics such as ability and behaviour are considered. In other words, family factors influence children’s social lives even for the less able or more difficult children.

A recent longitudinal study of American children with Down syndrome up to 10 years of age has also identified the effects of family factors on the children’s development.[TODO: references 14] Progress in self-sufficiency, communication and social skills were all influenced by family adaptability and emotional cohesiveness and mothers positive interactive style when teaching her child. The effects of these factors were pooled so that their individual importance cannot be identified. The reader may be interested to know that the children’s motor progress was not affected by the family or mothers characteristics.

Children and families influence each other

In summary, these research studies show that parent and family characteristics and coping styles not only influence the stress that a family experiences when raising a child with Down syndrome but they also affect the development of the child. Unfortunately, the way in which family strengths and child characteristics interact over time will tend to make matters better or worse. A family with many strengths at the time that a baby with Down syndrome is born will be able to cope in a way which reduces the sense of distress and leads to positive parenting. This in turn leads to better development and less behaviour difficulties for the child, continuing to make the child more rewarding and life easier for the family. A family with many weaknesses at the time of the birth of a baby with Down syndrome will be less able to make a positive adjustment and feel able to cope. Their distress may lead to less effective parenting and, in turn, the child will make slower progress and be more at risk for behaviour difficulties. The child’s difficulties become a greater burden and increase distress in the family.

These somewhat extreme examples highlight the point made at the beginning of this book that all families are transactional and dynamic systems, that the behaviour of each individual affects the behaviour of the others and that families change over time as they manage these interactions. The examples used also emphasise the importance of very early support for families to ensure that they are helped to make positive adjustments and supported with advice on effective parenting styles. The most vulnerable families are at significant risk of high levels of stress and steadily increasing problems if early support from families, communities and services is not available to them.

## Positive strategies for families

The benefits of research studies are that they can identify broad trends and the factors that may be important for many, though not all, families. The most important finding from recent research with families with Down syndrome is that most families are doing well. Most families find the resources to cope with the new and ongoing additional demands of a child with Down syndrome, lead ordinary lives and life goes on. Most families can realistically identify the extra demands but also the benefits that they have experienced. This has been a very important message for the professional community over the past ten years, as the specialists in disability services tended to have a generally negative view and assume all families suffered when raising a child with a disability. This influenced the advice that they gave to new families and in many places it still does so. It probably still colours the advice given in screening and termination programmes. Parent groups may still need to spread the positive information that most families do well to professionals in their area.

However, some families (25-30%) are not doing well. Their lives are stressful and the difficulties that they and their children face daily should not be underestimated. They may be able to benefit from the growing pool of information on the positive strategies that families use to meet the demands they face and the factors that increase vulnerability and make life difficult.

Parents may find it helpful to evaluate their particular strengths and weaknesses, and identify sources of support or strategies that they could use. Figure 3 is a schematic attempt to show the range of possible family situations. The factors that contribute to resilience or vulnerability can be summarised under 3 headings family factors, child factors, and support services. This is simplifying the complexity of life, but may be a helpful way to see why some families are having a more difficult time and give some pointers to solutions. For example, good services may help to support vulnerable families with their personal and family needs. Good services may help with the management of behaviour problems and provide respite care. If there is a good parent support group in the neighbourhood, and services are poor, then the group can advocate for better services or provide them.

Figure 3 . The range of family experiences

Evaluating your family situation

One use of the information summarised in Figure 2 is that it could be used as a checklist to evaluate the strengths and weaknesses of your own family resources and network of support. It can also be used to inform new families of the positive ways in which they can use coping strategies and evaluate their needs. Before evaluating your family situation, it may be helpful to recognise that it should lead to positive outcomes to help you look for solutions to identified weaknesses, by using your family and social support or service networks. It will also be important to remember that families change, and resilient families can become vulnerable or vice versa. No family has all weaknesses and no strengths, so be sure to list strengths first, using Figure 2 as just a starting point.

Personal needs

The research highlights the central importance of parents and their own personal strengths and needs. It also highlights the importance of emotional and practical support from others, starting with support provided by a good relationship with a spouse or partner, or a parent or close friend. This echoes research into depression in women which highlighted the benefit of a close confiding relationship, providing a feeling of being valued and understood. It could be a spouse, but it could also be a friend or family member that provides this positive support. In other words, if you are a single parent or do not feel you have a good marriage relationship, it could be helpful to recognise that this positive support could come from someone else.

The suggestion that our own personalities influence the ways in which we cope might mean that evaluating our own coping styles could again lead to deciding to find more support from others. For example, someone with a tendency to be anxious and to worry might find the support of another parent helpful rather than professional help. Some professional help might increase feelings of inadequacy and be rejected because the professional does not really understand what it is like to be a parent coping with difficult pressures. Another parent who has been through the experiences may be more welcome and in turn provide reassurance and practical advice. Once one or two supportive friends are found, the parent might be more willing to join a support group or make more use of services.

Family needs

A clear message from research and from personal experience is that it is families who make the most significant difference to the lives of children and adults with Down syndrome. Family cohesion and harmony as positive and important factors come up again and again in the research studies. These are families who are generally happy, caring for one another and enjoying ordinary family life. Families need to recognise this, as do service providers.

Value the family experience and contribution. Families need to value what they provide as part of ordinary family life. The biggest influence on childrens progress comes from the family from being a much loved member of an ordinary, happy family and from being involved in all family activities. This may sound obvious but too often families are led to believe that it is the therapy and the teaching that will make the difference. Early services tend to focus on the childs needs and to emphasise the extra and special needs of the child. This leads parents to feel guilty if they have not kept up with the exercises or teaching games while at the same time undervaluing the effects of their all day, every day quality interactions with their baby or child. It is the social environment, family life, parenting skills and daily communication in the home that have the biggest effect on the progress of all children, including those with Down syndrome. Extra input may help, though much recommended therapy has never been fully evaluated. However, it is possible for the extra activities suggested by services in the early years to actually undermine ordinary family life, and end up having an overall harmful effect for child and family.

Families need to preserve family life. In addition to preserving family life, because that is the best way to help a special child, families also need to recognise the importance of taking care of themselves. All family members are important and the life of the family group is important. Life goals and family activities should not be changed, any more than may be absolutely essential, in order to meet the needs of a child with Down syndrome. This is an important message to get to parents early, as sometimes fathers plan to change jobs, the family plans to move or mother decides not to continue with her career during the early months of adjustment. It is helpful to reassure families that this is not usually necessary or desirable in the longer term. This baby’s needs can almost always be met within the family as already planned and should not take precedence over everyone else’s needs.

In addition to thinking about the needs of the family as a whole, parents need to be conscious of the need to continue to take care of themselves and each other. It is parents who are at the centre of the family, maintaining family cohesion and harmony and if they become tired and worn out, they will not be able to do this. One implication of this point is that it may be important to accept regular respite care for the child with Down syndrome with family members or services, to ensure enough time for rest for parents. Parents often feel guilty about taking time for themselves, when it is essential to do so in order to continue to be an effective parent.

Families should be in control. The third point that arises from recognising the central importance of family life for the child with Down syndrome is to urge parents to take control of the situation and decide how they wish to manage the advice and demands coming from services, family and parent organisations. I often summarise this by using the phrase “Its OK to say no!” In the early days, parents in many communities are bombarded with advice, most of it telling them about their baby’s special needs and what they need to do to help their baby’s progress. They are offered home visiting services, therapy services, and support groups. Their lives are suddenly taken over by well-meaning others, their privacy is invaded and they feel that they must follow the advice and do the therapy or teaching if they want to help their child. Most new parents of a baby with Down syndrome are on a steep learning curve and will find it difficult to decide what is important and what is not. They may feel guilty about not doing the best for their baby if they do not take up every appointment, service and group offered. Most services offered may help but all have a cost in time, energy and sometimes travel. The value of most services is probably over-rated by most service providers and most parents.

Any demonstrated benefit has to be weighed against the disruption to family life and to the baby’s routine. The effect of services on the baby’s daily life is rarely considered. If home visitors call, visits to services are expected, and therapy has to fitted in at home, these may all prevent the establishment of settled daily routines for feeding and sleeping. In the long term settled routines reduce the likelihood of feeding or sleeping difficulties, make the baby feel secure, enable the toddler to predict the day and provide the necessary foundation for the child to grow and learn. Settled routines may enable mum to plan her tasks during the day and find time to rest and relax as well as meet the needs of the rest of the family.

Parents should be encouraged to be confident in their own feelings about the way they wish to manage their lives. Some families (if not most) will benefit in the early days from being left to get to know and enjoy their baby, taking on as much or as little additional advice and therapy as they feel comfortable with. Of course, acute health care needs have to be addressed, as do feeding difficulties, but giving the family a chance to regain its equilibrium and enjoy the new baby should be the priority. The first thing that babies with Down syndrome need is good parenting - good parenting as it applies to all children: good health and physical care, a stimulating environment where the child is loved, enjoyed, talked to, played with and read to, and good behaviour management, from the first year of life.

The baby with Down syndrome does have additional needs but not at the expense of basic good parenting. Additional therapies and teaching activities will only be effective if parents can carry them out within their daily routines. This means that professionals should see their task as passing on their skills and knowledge to parents. This has implications for the way professionals work, which are discussed in the next section.

Parents as informed consumers. Parents should be encouraged to become informed consumers of services.[TODO: references 41] This will take a while, as most parents will need some time to become familiar with the information on the needs of children with Down syndrome and their families. Parents should be confident about their own feelings and judgement, and be aware that the baby’s needs can be overemphasised. Decisions about meeting the baby’s needs must be taken with consideration for the effects that they will have on family life and the needs of other children in the family. A consideration of the demands they will make on parents is especially important.

Brother and sisters. If parents are thinking about the family group and family life as a whole and coping well, then brothers and sisters do well. However, it may be important to be conscious of their feelings at all times and ensure that the child with Down syndrome does not always become the priority for parental time and concern. It is very difficult for parents to always assess the significance of squabbles and jealousies that appear between brothers and sisters at times. There is a tendency to think that they may only be happening because one of the children has Down syndrome when, in fact, they may be part of the ordinary rivalry and antagonism between siblings that arises from time to time.

Research studies suggest that siblings report less conflict and more positive interactions with their brother or sister with Down syndrome than they report with typically developing siblings. Children take their cues from their parents if parents are positive in their interactions with the child with Down syndrome and generally convey a sense of being in control of the situation, then siblings will feel positive. If parents handle family conflicts fairly and expect acceptable behaviour from the child with Down syndrome, this will also encourage good sibling relationships.

There will be times when life is difficult and the child with Down syndrome has to understand this. For example, in the author’s family, the child with Down syndrome, Roberta, was the eldest. When her younger brother was old enough and sensible enough to go to the local shop alone, she was not. He was not yet capable of taking care of his sister if he took her to the shop, therefore she had to learn that life was unfair - he could go out alone to the shop but she had to stay at home.

The author also made clear that, while Roberta would benefit from being included in their play with friends, it was fine for her brother and sister sometimes to go out to play or have friends in and not include her. It was important to respect everyone’s needs equally. It was also made clear that Roberta did not need to always be invited to events at the other children’s schools if they did not want her there. At the time they were growing up, attitudes to disability were not as positive as they are now, and the author was aware that they might suffer teasing about their sister and that her presence in the family might affect their friendships.

In fact, they rarely requested that Roberta was not included in their important events. However, when her sister did ask for her to be left at home for a while, it turned out that this had nothing to do with her disability. Her sister reported later that she was fed up with being the third child and never getting her mother or father’s undivided attention! To quote “I never got you to myself - even if I needed a new pair of shoes everyone had to come.” The three children were very close in age with only 4 years between the youngest and the eldest and dad was away for work in the armed forces for long periods. For a number of years I assumed Roberta’s sister had been teased and was sensitive about her sister’s disability when, in fact, the problem had nothing to do with Roberta’s disability!

This example is included to alert parents to the tendency to interpret events in the family as if they are related to disability when often they are not. There is the same problem in families who go through divorce, with a tendency to assume all the children’s problems must be because they are being affected by family break up when they may just be part of growing up.

Child factors - recognising additional needs

It may be helpful for parents to know that they will be experiencing more stress when their child with Down syndrome has certain additional needs so that they can identify the specific types of additional help that may improve the situation.

Health and development. Parents who have children with more significant health problems or with more severe developmental disability are likely to be coping with more demands and experiencing more stress than most families with children with Down syndrome. When they are aware of this, they can take steps to ensure that they make full use of practical and emotional support from families, social networks and services. It may help to use day care and respite care facilities to ensure that parents have some time for rest and relaxation. Children with more severely delayed development are also more at risk of developing difficult behaviours, so that advice and support for behaviour management may also be an important resource.

Temperament. Children with difficult temperaments are going to be more difficult to raise, whether or not they have Down syndrome. Children who are irritable and restless as babies and children who have short attention spans or are hyperactive are more difficult to manage. It will help parents if they recognise this and do not blame themselves for the child’s difficulties. Parents with particularly difficult children need to be confident in establishing settled routines and in providing clear boundaries for behaviour. In the authors experience, children with Down syndrome and difficult temperaments are more difficult to manage than typically developing children with similar temperaments because the children with Down syndrome will be slower to develop their cognitive, language and social skills.

It will therefore take them longer to reach the stage where they understand dangers and risks, longer to acquire enough communication skills to be able to ask for what they want or to understand explanations, and longer to become sensitive to the social feedback from others. Early intervention services need to be ready to offer support from the first months of life. Parents who already have other children may be more confident and successful in managing a child with a difficult temperament. If the child with Down syndrome is a first child, parents may be more vulnerable as they have no previous experience of babies and young children. They will benefit from support to establish routines and manage behaviour. Prevention of difficulties is so important, as established behaviour difficulties are not easy to change.

Behaviour management. Many children develop challenging behaviours, not just those with more difficult temperaments, if a child has additional behaviour or sleep difficulties, it is also important to recognise that these can usually be improved and, by doing so, everyone in the family will benefit from the reduced stress. Behaviour change requires some support and commitment but it will be worth it in the end. Parents of young children can see that managing behaviour effectively from the start is important and may be more inclined to seek help quickly if they know that problems can persist and greatly increase family stress.

Similarly, if a child has more significant delays, it may be important to recognise that the daily burden of care is more stressful and to consider the benefits of using a respite service. It may help to get professional help to plan and implement a behaviour change programme. Behaviour change programmes will work if everyone in the family keeps to the agreed plan and manages the child in the same way parents and family members must support each other and be consistent. The programme must be maintained consistently for long enough. The most common reasons for failure are stopping the programme too soon or the programme being sabotaged by those who do not keep to the plan! Advice on understanding and managing behaviour is contained in the Social Development books in this series.

Attachment. It may be important, but difficult, to recognise bonding and attachment difficulties and an inability to love a child. If a parent can recognise their lack of real attachment with the child, then they can plan to address the issue. It may be that a parent can make a conscious effort to recognise their tendency to negative feelings towards the child and the way that the episodes of negative feeling make him or her dwell on the child’s weaknesses rather than strengths. Other family members may need to try to support the parent and understand their difficulty with feelings and attachment. Other family members can help by making a conscious effort to give the child a sense of security and unconditional regard. In addition, the child may benefit from times of respite care away from tensions, with grandparents or service providers, and the parent who is finding attachment difficult will benefit from the break.

The attachment difficulties as discussed here are quite rare. Most parents do not find it difficult to bond with and love their child with Down syndrome and all parents have both positive and negative feelings towards their children at times, within a secure relationship with the child. However, real attachment difficulties lead to the child feeling insecure and can lead to long term stress for parent and child.

Support services

Making full use of support and information

The research indicates that those parents who go out and look for information, services and support do obtain great benefit from this. The children of parents who make full use of support networks also have children with more self-sufficiency, presumably because they benefit from more social contact and social independence when they are involved in social and group activities.

Gaining information and advice from a range of sources including professionals, other parents, adults with Down syndrome, publications and websites should enable parents to be more confident informed consumers. However, there is one caution here, as not all information is reliable. When a child has a condition which cannot be cured then claims for miracle cures and treatments are always being offered. Parents need to evaluate the information available and to recognise that some advice and therapies would not be supported by scientists, medical practitioners or the majority of Down syndrome associations because of concerns about safety and efficacy.

Family and community support

Parents may like to consider, from time to time, whether they are making full use of the practical and emotional support available, for themselves and their children, from the extended family, from friends and from the local community. Sometimes life is so hectic that there is little time to reflect on the situation and think about new sources of support, but it is worth doing this from time to time.

Parent support groups

Parent support groups vary widely in their aims and how they function. They can provide friendships and emotional support, practical advice and information and advocacy when better services are needed for children.

Friendships and emotional support. In the authors experience, some of the most important life long sources of support for individual families have come from the personal friendships established with other parents at support groups when children are young. Friendships between parents who met at the Down syndrome group when their children were babies are often sustaining individual families through the changing demands of adolescence and adult life with their children, and through other significant life events such as parent illness, divorce or bereavement.

Advice and information. Parent groups are usually a very useful resource for information and practical advice, both on the needs of children and the available therapies and services. Consumers of services often have a different and valuable perspective on the relative merits of the local services available to families. They also know about the rights of the child and family.

Advocacy. Parent groups can be powerful advocates on behalf of all children with Down syndrome in their neighbourhood and can change the services available. They can also support individual families when they are battling to obtain the services that they want for their child. Fighting professionals can be a difficult, stressful and time-consuming task for an individual family, and advocacy from a local parent organisation can be a considerable help.

Professional services. The professional services available to families will vary considerably in different countries and in different communities. Access to services may be free in some communities but not in others. However, it is important for families to find out what services and financial benefits are available to them and to make full use of the services that are appropriate for their child and family. These services include health and education provision as well as early intervention and respite services for children and respite, independent living and employment services for adults.

As mentioned earlier, it may be helpful to approach professionals, recognising that you wish to be an informed consumer and draw on information and services that will help you, your family and your child. The expertise that professionals have is a very important resource, but only if they are willing to share it with you in a spirit of collaboration and shared decision making. Professionals who simply claim to know what is best for you and your child, without respecting your views and knowledge, are best avoided.

Good professionals know that the best way to help a child is for the professional and family to work together in a partnership which respects the equally important contributions (and the strengths and weaknesses) of each member of the partnership.[42-48]

Positive strategies for services

The first message that research provides for service providers is that their focus should be on supporting families rather than children. The research indicates that most families, 65-70%, do well because most parents and family members have the personal resources and support networks to sustain them. Most children with Down syndrome do well because they are much loved members of happy families, experience good parenting and are included in the social world of the family and community. They are children first and are affected most by the same things as other children.

All children with Down syndrome have additional needs, for healthcare, therapies and education, but if those are to be addressed, then the family will be the main provider of additional therapy and teaching, working alongside the professional. This means that all services should be family focused and should serve to increase the resilience of the family.

Priorities for services training needs

It is clear from the research studies that some families, about 25-30%, are more vulnerable and these families can be identified in the early years. Vulnerabilities come under three main headings, family factors, child factors and support services. The factors that may lead to long-term difficulties can and should be identified in the first years of the child’s life. Families who may have marital or personal difficulties and tend to have less positive coping skills need support from the first year. Prevention of behaviour problems should be a conscious target for all families and service providers from the first year of life. In the authors experience, behaviour difficulties are the most common and significant stressor for families with children with Down syndrome. Services and practical support can alleviate potential stress but parents frequently report that professionals and services may actually be a source of stress.

Transition points and changes

• birth of another child
• starting school
• changing schools
• adolescence
• leaving school
• moving house
• changing job
• bereavements
• redundancy

Transition points for the child may lead to:

• battles with professionals for a particular service or school
• changes in support networks, e.g. leaving a preschool support group or losing a home teaching service
• worry about the child’s ability to cope in new situation
• the need to establish relationships with new professionals

All early years services and therapies If effective support is to be available those working in early services have a very important role to play, and the research indicates that there are skills that they may need in addition to their basic professional training. In the UK, early contact will be with paediatricians, health visitors, therapists (speech and language, occupational and physiotherapy) and early intervention workers. All these individuals need training in counselling skills and family centred styles of working, and they need training in behaviour management, in addition to their other skills.[see 43-48]

Education services planning and training needs

Many families report that obtaining the education that they would like for their child is a major source of stress. The cause of stress can be two main issues lack of the provision they want and the attitudes of service providers. The research evidence indicates that, for optimal educational and developmental progress, children with Down syndrome should be educated in inclusive classrooms, fully included with typically developing peers of the same age. In preschool years, inclusive placements are available in many western countries. However, the availability of good quality, effective inclusive education for the statutory school years is still a matter for concern in most countries. Even in the USA and in the UK, families are fighting to obtain inclusive classroom placements and there is still a considerable need for professional training in inclusive practices. Many education professionals and service planners are still resistant to change. In many countries, only segregated special education is available.

There are two issues for education professionals to urgently address. These are the development of properly resourced inclusive education provision and attitudes to working with children and families with special needs. Despite the right to inclusive education in the law of many countries, services and professionals in those services need to develop inclusive services as a priority. More government backing for training and for implementation may be needed in many countries to see that the legislation is enacted.

Many education professionals do not work in a family centred way, including parents in planning educational programmes and goals and respecting the importance of partnership with parents if their educational goals for children are to be achieved.[see TODO: references 45] Most parents of children with Down syndrome have acquired extensive knowledge of the associated learning difficulties and effective ways of teaching their child. They may also be experts in behaviour management though not always. Teachers need to be prepared to work in a more collaborative relationship with parents of children with Down syndrome (or other special needs) than they usually have with parents of other children.

Respite care and community services

The research indicates that the families with the greatest needs will be significantly helped if good quality respite services are available. Respite services include overnight stay facilities, clubs, leisure facilities and holiday play schemes. These services may provide a lifeline for families managing very dependent or difficult children and, without such services, parent illness or stress may result in a need for permanent residential care for a child. These services also provide social opportunities for children. In a study, parents identified respite care and social or leisure opportunities as the two services that they and their teenage children with Down syndrome most needed. Currently, in the UK, these services are seen by providers as optional and are threatened with closure when finances are scarce. This is clearly a misconception and parents are campaigning for these services to be part of required statutory provision.

Family centred services

In all services, a family centred approach is recommended in the professional literature as well as indicated by parents needs and experiences.[43-48] However, many services could benefit from reviewing the way in which they deliver their services against the criteria for family centred services and many individual professionals could benefit from taking a hard look at their own style of working with parents against the same criteria.

Parents may reject services and fail to benefit from professional expertise because professionals express a desire to control, persuade, rescue, or prove professional capacities.[45: p 309]

Empowering families. The current focus is, and should be, on empowerment. Services and individual practitioners should assess the extent to which the way that they work respects and empowers families. Different writers have described empowerment in slightly different ways.

“Empowering families means carrying out interventions in a manner in which family members acquire a sense of control over their own efforts to meet their needs.”[49: p.48]

_“Enabling families means creating opportunities for family members to become more competent and self-sustaining with respect to their abilities to mobilise their social networks to get their needs met and attain desired goals._”[50: p15]

The characteristics of family centred services are illustrated in the box above.

Reproduced with permission from [TODO: references 45]

The range of professionals that will provide services to children with Down syndrome and their families is considerable. In the UK and western countries, it will probably include doctors, nurses, teachers, psychologists, speech and language therapists, physiotherapists, occupational therapists, social workers and respite care staff. The amount of training in counselling skills, listening skills, understanding family and child needs, and working with families that is included in their basic training will vary from substantial to very little or none. Some professionals training will have focused entirely on expert knowledge and skills. As already stressed, this is an issue for professional training bodies to address, as many young (and not so young) professionals have little preparation for working in a family centred way.

Listed below are some basic guidelines based on research studies and many years of working with families.

Attitudes and beliefs. The starting point for a change in approach is beliefs and attitudes. Unless each individual believes the approach is the right one, they will have difficulty in changing their behaviour and practices. This has been recognised by professional trainers, and the beliefs and attitudes which underpin a commitment to a family centred way of working are summarised in the box. Consider each of these in relation to your service or personal practice as a starting point.

Listen to parents. Recognise that parents perceptions of their situation are valid and the starting point for any help or intervention not your interpretation of their life situation. Think about the needs and resources of the whole family and encourage parents to do so do not just focus on the child’s needs. Remember that parents are often the experts on Down syndrome and their knowledge of research and best practice may be more up-to-date than yours. Find ways of acknowledging this and working in partnership with parents, rather than being threatened.

Demands of services. Recognise the demands that services and therapies may impose on families and try to develop family friendly models of delivery. Services which invade family privacy and undermine the family’s daily life may be unhelpful, especially when they prevent parents from establishing settled routines for a baby or young child.

The needs of fathers. Services which only involve mothers and leave out fathers are not family friendly services and are not as effective as they could be. These services are probably not aware of the importance of fathers full participation in decision making and in supporting his spouse, for family well-being and for the child’s progress. They are also not aware of the need to support fathers as well as mothers.

Share skills with parents. Professionals need to work with parents in a way that passes on their knowledge and practical skills to parents. For example, parents need to be able to manage behaviour effectively and the skill may be important through to teenage years, therefore, they need to know how to design and implement their own management strategies. Similarly, parents will be a child’s best speech and language teacher, therefore the therapist should pass on their knowledge of the way in which language develops and teach effective communication and intervention strategies. This may mean developing services which enable parents to access workshops or training sessions for the theory and which then provide practical teaching of activities to help their own child. The therapist will continue to play an important role in regular review and new target setting with parents, and in modelling new activities in order to teach parents, but direct work with the child will not be the main means of encouraging progress. The same model will apply for physiotherapy and occupational therapy.

Co-ordinating services. Services need to be co-ordinated, otherwise families can become overwhelmed with too many demands and even conflicting demands. If services respect the parent as an informed consumer, then they should encourage parents to take the lead in determining service use and co-ordination. In the UK, a key-worker system has been advocated for many years to co-ordinate services for families with preschool children, but never implemented. In the USA Individual Family Service Plans are required in early intervention services. Other countries could consider similar approaches to ensuring a family focused and coordinated set of services.

Summary

The main aim of this book has been to draw on the research literature to identify the ways in which families experience the task of raising a child with Down syndrome, in order to provide specific information to families and to service providers on the needs of families. This enables families to identify the best ways to cope with the increased demands of raising a child with a disability and service providers to target effective and specific services, rather than general ones.

While it is clear that the majority of families lead ordinary lives, find the resources practical and personal to cope effectively and see their child with Down syndrome as a blessing not a burden, it is equally clear that about one third of families have a more difficult time and need additional support. Some of the important factors that make life difficult for this group of families have been described in a number of studies. Early support for families, informed by this information, could be effective in reducing the life-long stresses that can result if such support is not available.

Acknowledgements

The author would like to thank Gillian Bird and Professor Ben Sacks for their helpful comments on earlier drafts. However, the opinions expressed and any errors or omissions remain the responsibility of the author.

Terminology

The term learning difficulty is used throughout this series as it is the term currently in common use in the United Kingdom. The terms mental retardation, intellectual impairment, and developmental disability are equivalent terms, used in other parts of the world.

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## Appendix: Descriptions of family life

The Hampshire Survey, 1999[TODO: references 31]

A representative group of 46 families took part in this study. Their responses to questions about the effect the child with Down syndrome had on family life and on brothers and sisters are included, and also their views on service needs. As might be expected, most families reported both positive and negative effects, but with the balance in favour of an overall benefit. Two families reported only negative effects, while 21% reported only positive effects for the family and for siblings, and 73% reported positive and negative effects. The main negative effects were restrictions on family activities and restrictions on mothers lives.

The main need from services was for more respite care and leisure facilities. Overall, 34% of families mentioned a need for more respite care.

Can you describe in your own words the good and bad effects that your son or daughter has on your family life?

Benefits

Our daughter has bought a lot of pleasure to us all. She is always making us laugh.

C. is a happy, content girl. Very understanding, helpful and has a great personality, she brings out the best in everyone.

M. has 3 sisters I feel M. has made them kind and thoughtful, when she was younger she may have affected outings I would make on my own with the children, but generally being the second eldest, we have had a younger child now all is equal.

Nil bad only beneficial for all concerned.

We’ve done things other families probably wouldn’t do i.e. met royalty. Also made the most of our spare time and holidays.

A positive impact on family dynamics and relationships enhancing family life and bonding us as a group. We have all learnt new skills and interests (and a new career path for me!). He has enriched our lives and also developed us as individuals.

He is happy and outgoing and lots of people know him so we talk to more people because of him. We took up skiing because he started at school and loves it

D. has a positive approach to life and brings that to the family. His caring nature and enthusiasm are infectious. I think he has made the family dynamics easier that they would have been, especially teenage years

Brought family closer together

Met some good friends through T. He is a very happy child with a great sense of humour. Watching him win medals at swimming makes us all so proud.

It has given us more tolerance, more patience and more understanding of others’ problems.

Opened up many avenues I wouldn’t have gone down met many friends through organisations. Strengthened my Christian faith.

J. has a very positive effect on our family life, our other children are very patient with J. and other children/adults with disabilities. She joins in all our family outings holidays, as any other member of the family. We have lots of friends, who accept J. totally. We have made many friends through J.

K. came to live with our family aged 8 months, mostly it has been a good experience but has had to be carefully managed, we have had some respite.

We adopted our son as a very small 18 month old baby. We have never regretted it. He has given us a second life. Yes, there have been bad times like what school he had to go to and what college. But our family life is good and we are very, very happy as a family.

Difficulties

The only bad effect I can think of is other peoples reaction, it hurts all of us.

I am naturally concerned for her future, and find I am constantly aware of her needs and try to meet them.

Just a bit tired having to organise baby sitters still when we should have a bit more freedom.

High levels of stress, anguish and fear, frustration and limitation regarding scope of family activities during early years.

Has caused some restrictions, e.g. it is difficult for me (mother) to contemplate outside work.

As a single parent my life is very restricted regarding work and social activities.

Difficult behaviour causes much stress and fatigue. Younger brother (8 years) often resentful.

Couldn’t spend much time with other children as our son needed more attention.

Limited social life for us as parents.

Isolation. Extra stress. Constant fighting for his rights takes it toll, particularly on my health. Daily battles to do simple tasks is very frustrating.

Sometimes we have been restricted in our activities. When my sons were younger there was a certain amount of embarrassment when their peer groups would make derogatory remarks to them.

Worry, stress, uncertainty, especially of M’s health and education.

Benefits and difficulties

Impossible to describe good or bad effects there is nothing to compare our family life with. J. is part of our family life, as is.

He has brought a great deal of joy into our lives, but he has also brought a great deal of worry especially about his long term future.

He has brought joy and happiness to our family sometimes a little sorrow.

Good for most of life, but getting her depression acknowledged and dealt with was a traumatic 12 months for all family.

Not affected, just one of 4 children.

It has been beneficial of all of us in accepting her special needs. But it has made it difficult being unable to do certain activities because she cannot participate.

Brings a lot of happiness into our lives. Her disruptiveness being rude or awkward can cause parents and sister to get cross and upset.

He has no bad effects. He is just a member of our family. We cannot leave him on his own so perhaps cannot always do what we want if it would not involve him.

Our daughter brings more love, fun and laughter to family life and though she will never be an academic there are other qualities that she has which cannot be measured. I suppose we have tried to make this a positive experience! As the mother and main carer my job/career prospects are on hold to ensure a good quality of life for my daughter.

K. has focused our lives in one direction. The effect of this can be good or bad. We think we are more understanding and tolerant, but more tired.

Very loving, trusting and happy boy enjoys life and is very sociable. Cannot always do things we would like to do, he takes up a lot of time. Unable to work full-time in my career so have to accept a job which accommodates his needs.

Though we were devastated when he was born, he was such a happy child, and relatively little trouble, apart from illness, that we soon realised we wouldn’t be without him. Though there has been stressful and worrying times (notably age 10-12) he has added another dimension to our lives, and I’m sure we met a lot of people, done a lot of things that we wouldn’t have done otherwise. He is popular, friendly and non-judgemental and all in all the positive effects outweigh the bad.

At the moment we have to take C. out and stay with her for any activity, she has not got any local friends of her own. We make her social life. She goes everywhere with us. We try and make it as varied as possible.

What kinds of services would be most help to you at the present time?

More respite care

Physio, speech therapy, respite care.

Babysitting service when we want to go out alone. His grandmother who has always stepped in and who he loves is getting older. Other family members are willing but as he is 19 it would be better if he could stay with someone else like Kentish Road which you can stay in for holidays or W/E.

Respite care in the evenings, more weekends at Rose Rd.

Perhaps respite care once a month, so we could take the others to play golf etc, or go on outings that require a lot of walking.

Respite care.

Respite as needed to fit in with us as a family. A social life for our son.

Continued education, continued speech therapy, continued respite care.

Some sort of mainstream respite care. Sometimes for a few days and other just for a few hours.

More overnight respite care, babysitting service.

Respite longer than a weekend (occasionally to really recharge our batteries). For M. to receive counselling at each life stage, to help her.

Respite in school holidays.

More access to social activities

An opportunity for J. to take part in sporting activity, e.g. basketball, football.

A young support worker who could go our with our daughter to leisure activities, e.g. cinema, bowling, cycling, swimming, visits, as this would be more appropriate than Mum or Dad.

L. needs to be out and about in the community as anyone else her age would. She needs to socialise with people her own age.

A young adult to befriend J. to take him to the cinema, go swimming on a regular basis so they could build up a relationship.

At present we manage alright with playschemes in the holidays. I would like him to be able to go to a youth club with children of his own age, but as we don’t have a car, and have to rely on buses it takes much too long to get to them (as they are not local to us). A club for special needs children would probably be most appropriate.

More respite care, clubs social and sport for J. to go to meet friends of her own age group. To go to social events, cinema, bowling, meals out. J. has been on lots of playschemes in the past, there’s not a lot about for her age group (16).

We would like for J. to have a Buddy.

More support services

Some respite care (being established). Specialists in Down syndrome behaviour management/psychologists advice to help with behavioural management.

Integration. Providing us with one or more local families that would accept us into their family.

More support for B’s school, i.e. professional advice for teaching staff who have no experience with Downs syndrome.

What would have helped in the past?

The boys being able to talk to someone about having a Downs sister.

Don’t some people have social workers? I have enquired on several occasions, but have not got any where.

More speech therapy and more rounded teachers i.e. less emphasis on the academic and more acceptance of the person and respect for his views.

Had enough help.

More support worker time during adolescence (age 13 16) to explore activities without Mum or Dad, make friendships outside home/school etc.

We are satisfied with the help we have had.

Respite when she was a baby, so I could have done more with her sister.

Respite care.

We were quite satisfied with the services on offer.

Better information and support from the LEA and Social Services. I would have liked my daughter to have gone to mainstream school from the age of 5.

More input from school psychologist to help with difficult behaviour in mainstream school, plus more resources.

Better child sitting services.

More appropriate respite care with young people with special needs of similar ability to K. Most respite care (very poor) not suitable for K’s abilities.

Some training in challenging behaviour. More speech therapy/programmes to carry out at home.

A local establishment that provided residential respite care both short and long term with pop-in facilities and outreach to families in their homes.

More one-to-one opportunity.

More time to devote to the rest of the family and weekly speech therapy.

Someone to phone or talk to when professionals failed to understand problems or stuck to red-tape.

More information, support and chance to meet parents from an earlier age. One support group was parent-led rather than council-run. Once at school it was probably easier to access info, though a lot of knowledge and know-how was gained from other parents rather than professionals.

A mentor somebody who we could have phoned up for advice and who would have been there for support.

Decent respite during school holidays.

## Effect on siblings

Can you describe in your own words the effect that you feel your daughter or son has had on brothers and sisters?

Benefits

Her brothers were 10 and 8 when she was born, they both wish she was not Downs, but love her to bits. They are both getting married this year and always said any girl they met would have to accept their sister.

She has one brother. They get along very well. He helps A. when she asks him. Otherwise they do their own thing.

C. has in their words helped them to understand others. They all love and think of C. and are proud of her. If others have made fun of C. they are very strong and supportive of her.

I feel he has made them less selfish and more aware of the needs of others.

Beneficial - brother now has understanding and empathy with handicapped people, who he accepts as part of the norm.

I think it has made my other daughter a more tolerant person. She definitely looks out for the under dog. She has never been ashamed or embarrassed to have a brother with DS.

Made them aware of issues facing people with disabilities and has given them a higher level of tolerance and understanding.

It has made them more tolerant of people with disabilities- protective of him. My son changed career and took up nursing - the branch he specialised in is learning difficulties.

I don’t think there have been any negative effects - perhaps it has given some insight to brother and sister.

Encouraged them to be caring.

Has made her a compassionate person.

They don’t know any different. They are more accepting of other people with special needs.

Benefits he has received extra attention at events because he is R’s brother.

They care for him and this has led to a positive attitude towards others with disabilities. They value the person behind the disability.

She has made them aware of disability discriminations and of the attitude of society in general towards people who are different. They have become ambassadors on her behalf, as have their friends - a snowball effect.

More aware of other disabled people.

My children have always loved and enjoyed J. as he grew up with them, he is very much part of the family.

Made her brothers more considerate of others’ needs.

Made the other children in family and school aware of disabilities. Knocked prejudice on the head.

We feel that the effect of having a brother with Down Syndrome on my other 2 children is that it has made them more understanding about people with a disability.

N. has two older brothers (mum’s sons from 1st marriage). They are both in their 30s (nearly 40 even) but they really have been so good with N. He is their brother and they have always treated him like a normal child, now teenager, and encouraged him in all he does. He really loves them too and they have great fun together.

Made them more considerate and less judgemental of others. They have gone without things other families have, but I’ve been successful in making them unaware of that.

Difficulties

Always anxious about her health. Beginning to get embarrassed by behaviour when out in public.

Sometime he embarrasses his brother with his childish behaviour.

Finds sister’s difficult behaviour and interference in what he is doing, upsetting.

Got less attention from us. Brother only tells close friends but not all his class.

Siblings have felt embarrassed sometimes bringing friends around.

Quite a detrimental effect on brother 2 years younger - quite simply a very shy, sensitive child who disliked attracting attention from strangers and as a family with a handicapped child we immediately attracted attention.

Benefits and difficulties

No apparent effect, K. is his sister and is treated as such.

They’ve made them more aware and sympathetic towards the needs of others yet at the same time they do get impatient and angry with him. When asked they do feel their lives were affected in their younger years.

Both our sons are more understanding because of Susan, but both of them do less to help out simply because G. does less.

Having no other siblings to help her with him or share problems with she has found difficult. In some ways she is like an only child. In others she is completely restricted by having D. as a brother and misses out as a result. She feels different and to some extent handicapped. She wouldn’t be without him though. She is upset when we discuss residential care for the future.

Sisters feel he has too much attention - especially my time - but they both love him dearly as he loves them. One sister tends to ignore him a lot, whilst the other one feels protective towards him and spends a lot of time with him.

They feel she is spoilt, receives more attention from parents. This is not unfounded. They feel more protective towards her than other siblings. Her ’floppy or sit-down strikes’ are found embarrassing when younger. Her eating habits are embarrassing (messy).

Though in the early years his brother and sister may have been a bit put out as he got extra attention (from us and others) overall it has probably been a positive experience. It has taught them tolerance and patience. Of course he can be aggravating, frustrating and occasionally embarrassing, and he can still be slow, he is their brother and they love him. It prompted my daughter to do her community service and work experience with adults and children with special needs.

At this present time L. has a positive effect on our other children, occasionally they feel embarrassed by her outgoing personality.

J. has 3 older siblings… they all absolutely adore him and have always made allowances for him. Although the 2 younger ones do sometimes feel that we allow him to make too many demands on us.

Are there things you would like to be able to do as a family, that are difficult because of your daughter or son with Down syndrome?

It is difficult to visit social events and places of interest where there are large numbers of people or enclosed spaces. He could not be taken on a plane to enjoy a holiday abroad.

She is unable to walk far and the wheelchair is heavy and cumbersome. The restricts me going to visit gardens etc.

Lots! Skiing and golf - as the other children become older it is becoming more difficult and she has less friends to go with.

We would like to take bike rides as a family but S. cannot ride a bike.

We would like to have done certain things with our other children (i.e. visited museums, galleries) when they were younger, but knew we wouldn’t together. One of us had to stay behind.

Not particularly but her behaviour makes going anywhere difficult at present. Plus we can never relax in that supervision required is far more than normal child requires.

Yes, there are places we know we couldn’t take him as he’d get very bored.

Social gatherings are sometimes a problem if D. feels that she is not getting enough attention.

She is no trouble whatsoever and fits in wherever she goes. She is sociable and well behaved but does not always want to go out with us and we feel guilty if we want to go out without her, so often we don’t go other than for a short time. She would prefer to be with other young people of her own age.

Go on holiday - respite for short periods only provided at present. When he comes with us we have to do things he enjoys (walking not being one of them).

Children are children but life becomes difficult when the Downs child gets older - say from about 12, e.g. Mother taking Downs son swimming - can’t trust him to go into male changing room un-chaperoned and not acceptable to take him into female area. The same goes for public toilets!

When younger - not being able to relax, she would ’escape’ from garden, or disappear when shopping. Always locking gates and doors. Holidays almost impossible either because of L’s health or behaviour. Babysitters were hard to find.

We do things that suit S. all the time, we would like to go on long walks and hikes but S. gets tired and walks slow.

No, we have a very active family home although I am disabled we manage to do most things together.

L. loves to be at home watching TV and videos. He only likes to go out if and when he suggests it or if we are going to club. This we find difficult because we have always loved going out as a family but invariably there is a build up of tension beforehand now. If we tell L. too far in advance, he goes on and on for ages saying he doesn’t want to go.

Relatives’ and friends’ help

Relations

My daughter’s father’s family live near by, they include our daughter in every family do, buy her things etc. But no looking after her.

My mother has A. sometimes when I need to go somewhere, where A. doesn’t want to, (hour or two).

Maternal grandmother looks after K. pre/post school collection until parent return. Also elder brother, other grandmother and 2 aunts.

Childminding when required. Collection from school when required.

Baby-sit on occasional evenings out. Look after him during college holidays when I have been working.

When J. was young my mother and father lived with us till they died in 1989 and 93, and were very helpful and supportive.

Help days off school if I am at college. Sitting in the evenings.

They live too far away for practical help, although D. has spent holidays with grandparents. All the family give positive moral support and encouragement.

During school holidays my daughter is sometimes cared for while I am at work.

Child sit if we go out late.

When they visit but only in a minimal way. Father in law will take M. swimming or to the cinema in school holidays which he loves.

My cousin and I were like sisters til I had my son. She was jealous because I had a baby and her youngest of three healthy children was 6 yrs! When my son was 6 yrs and had to be admitted to hospital re. viral pneumonia she told me she had her family to see to and has not spoken since, 12 yrs ago! My son has been deprived of her family and their children who could have made all the difference to our lives.

Usually my son or husband will look after him if I can’t for any reason.

My parents are 80 yrs old but in good health. They sometimes (look after) as they call it him when we go to a show or meeting, this is mainly to give them some quality time together. Our son often goes to stay at his brothers’ homes for weekend as he likes this.

Maternal grandparents will have her for a couple of hours, but are not comfortable with her. (They are also quite infirm now and I don’t like to ask).

They occasionally have the children to stay with them overnight. They look after the children when we go out. Verbal support.

Friends

S. goes to tea or could stay (all are sister’s friends) include S. as part of family.

Will have her round if I go out.

They used to when all the children were younger, but now that theirs are growing up and becoming more independent and doing things that T. cannot participate in, it is not so easy for them to help.

Has both sons to stay for occasional weekend so parents can go away. Will look after them if we go out.

Look after/sit while we are out sometimes.

As babysitter if we wish to go out or occasionally if a few hours day care is needed (e.g. school closed while we are at work).

Sometimes takes him to watch football matches.

I have one friend (an old teacher of my daughter) who will have her for 2 or 3 weekends a year.

One friend will have both children to tea occasionally, and look after him whilst I attend parents’ evening at J’s school. Friends through Cygnets do a reciprocal swap sometimes of Downs boys, sometimes of both children. Both children are the same age as ours.

Have during school holidays for odd half day -.not regularly.

My friend occasionally looks after M. if I go out, and may meet him from the school bus if I am unable to.

But not because of my problems only to give us and L. a change not a break away from each other.

One friend who will baby-sit. Another who is J’s family-link mother (but this scheme seems to be folding).

Look after H. for short periods.

Occasional babysitting.