Read an Excerpt
An Introduction for Parents and Carers
By Cliff Cunningham
Souvenir PressCopyright © 2006 Cliff Cunningham
All rights reserved.
Will we cope? What can we expect and how do we tell people?
Will we cope with the baby? – with the family, relatives and friends?
What are these children like? What sort of people do they become?
What do I have to do to be a 'good enough' parent for them?
How do I tell the other children, or grandma, or friends?
This whole book is an attempt to answer these questions. This first chapter tries to give some brief answers. Hopefully, they will be reassuring, and you will feel more ready to read other chapters. A starting point is to sort out the tasks that may lie ahead.
What tasks face the parent of a new baby with Down syndrome?
Being told your baby has Down syndrome is like being given a new identity – the family of a baby with Down syndrome. This usually involves great emotional and psychological changes for the parent and family. It is not surprising that most parents become overwhelmed and feel lost (Chapter 2).
It is true that 'time is a great healer' but it is not just time. It is not just about a passive period waiting for things to get better. Your mind is active. Although you may feel numb and in shock, or in total turmoil and getting nowhere, your mind is trying to make sense of this unexpected event. In a sense, this is a process of active coping. Understanding the process has been found to be a very helpful coping strategy. A first step is to identify key questions and tasks. I think these are:
Understanding yourself, your feelings and reactions as a parent of a child with Down syndrome (Chapter 2).
Understanding how others feel (Chapter 2), and the effect the birth may have on them (Chapter 3).
Understanding Down syndrome, its causes, characteristics, what to do and what the future might hold (Sections two, three and four).
Understanding your new baby with Down syndrome. This is something you and the baby do together. You, your baby, and your family are unique. All the information about Down syndrome is general and gives background. You get to know the baby and your relationship with the baby through everyday experiences.
I hope this does not sound too simple. It is not a stress free process. These tasks are not done quickly or in order. The first weeks after a birth are busy and tiring. Sometimes there is just not enough time and energy to sort everything out. I hope to show that most parents do sort it out within the first months.
A first action is to decide which tasks are important at this time, and to work on these. Put the others in a box and leave them until there is energy and opportunity to take them out and examine them. But please don't ignore them – too often all the focus is on the baby and less time is given to think about other things, especially your feelings and keeping family life balanced and working.
Will we cope?
Books and articles by parents, and many studies of families who have a baby with Down syndrome, confirm that the chances of coping are far greater than the chances that you will not. I interpret this as showing that most of us have resources we are not aware of until faced with a challenge.
When the children in our research were 7 to 14 years old, we asked the parents to reflect back on their experiences and feelings of being a parent of a child with Down syndrome. Just over half said it was rewarding and strengthening, a quarter felt it was the same as with their other children, and a quarter were more negative. This last group usually had other problems, and their child with Down syndrome had additional problems (Chapter 9) that made great demands on family resources.
Some studies have asked mothers of young children with and without Down syndrome about how they coped with the baby and young child. Over two-thirds of both groups said they coped, the rest had experienced difficulties and again, this was usually because they lacked some resource.
If we have a problem but not the resources to try to reduce it, we have a need. The task is to work out what are our needs and then seek out the resources. Services should be doing this as part of the support they give to parents – accurate information, practical and financial help, for example. But parents and families can examine their own strengths and needs, make plans and develop their own resources. Leaving it all to one parent, usually the mother, is not likely to help the family cope. The benefits are not just to the child. Many parents state that having a child with Down syndrome has brought the family closer together and helped them to be stronger and more tolerant people. My observations are that this happens in those families that look at individual strengths and weakness, respect each other, work together and marshal their resources. They appear to experience less stress and more pleasure in parenting a child with Down syndrome.
As usual parents speak better for themselves:
'When we found out she was a Down syndrome, I thought it would just be an endless burden ... I didn't expect any joy or anything good. Of course we didn't know any better. We had no experience and the way we were told just made you think of all the problems ... Over the years that changed. She did things and every little gain was such a joy ... I felt so proud, like the day she walked straight into the playgroup, head held high and just started to play like any kid ... none of the other children bothered ... it was really me feeling all up tight. That's all gone now. She's herself and one of the family. She's sort of brought us all closer together and whenever she's around somehow she soon cheers you up and gets people friendly.'
Most families eventually feel the 'tragedy' was not catastrophic, and many feel their lives have changed for the better. Many of these understandings and reflections come slowly, often many months and even years after the diagnosis:
'if we hadn't had a handicapped child we would have had two children, everything pre-planned, under control. Instead we have four kids and a lively time ... the carpet was yanked from under our feet by his birth but it has given us a tremendous amount of pleasure. It brought out our fighting qualities, has given us lots of friends – affiliations that are stronger than non-handicapped friends; it makes us value the important things in life as opposed to achievement and financial success ... we are less inclined to worry about silly things.'
In other words, the member of the family with Down syndrome is not just a passive recipient of family resources and help. These members can make their own contribution to the quality of the life of the family.
What factors are associated with stress in parents of children with Down syndrome?
About a third of families find coping very difficult and experience persistent high levels of stress. This is more likely when the child has severe behaviour problems, which affects only a minority (Chapter 9). Even with these children, many parents develop ways to cope and find pleasure in their child. However, many studies of families have shown coping becomes more and more difficult if the following other factors are present:
High levels of stressful life-events – especially if they involve family relationships.
Financial problems – linked to inadequate housing and transport or employment difficulties. Poorer family relationships may be caused by money worries, which then affect how we manage the children, they develop behaviour problems and this increases the stress for the parents.
Personality of parents – those more likely to feel anxious and less competent experience more stress.
Inadequate coping strategies – 'wishful' thinking is associated with stress and health problems, whereas active coping and problem solving appears to reduce stress in many situations.
Poor adjustment to the disability is associated with stress, lower levels of well-being and failure to enjoy and value the child.
These are all discussed in more detail in later chapters. As noted above, the way to try to reduce the stress and strain is to identify the need and then find a resource. Most people feel better as soon as they have made a plan to do this.
Demands, needs and resources
From my reading and experience, I have found that problems are usually associated with a lack of resources to deal with the child's caretaking demands, or his or her need for supervision. The other category concerns the parent's feelings about being a parent of the child.
These are about the physical needs such as dressing, bathing, feeding, lifting, and taking children to school, hospital, leisure activities and so on. Most children with Down syndrome, even those with mild intellectual disability, never attain all the life-skills and achieve total independence. They do make above average caretaker demands, but only a minority fall into the category of profound disability with very complex needs (Chapter 10). Some have additional health needs that increase caretaking demands such as special diets, need to be kept warm, medicines and preparations for dry skin (Chapter 7).
Faced with such demands, healthy and energetic parents are less likely to feel pressure and strain. Resources such as washing machines, disposable nappies, cars or help with transport, modified housing and practical support like shopping, travel, baby-sitting or respite care, can all reduce or prevent strain and support coping. A lot of this is to do with having enough money. Parents who feel supported emotionally and practically by each other, and by relatives and friends experience less stress.
This is about having to keep a constant watch on the child. It is a big demand on time and restricts what the family can do. Children who develop slowly need similar levels of supervision as the typical young child, but for longer. As he child matures and develops, supervision demands usually reduce. Most families cope with this 'normal but slower' development (Chapter 9).
A minority of children with Down syndrome are excitable, hyperactive and attention seeking (Chapter 9). Their supervision demands are likely to drain family resources and cause stress and problems within the family. Again, stamina, health and energy are important coping resources for family members. Practical resources like modifications to the house such as an enclosed garden or safety locks can help, as can practical support and respite care. Good management practice can prevent problems and should be established early in life (Chapter 9).
This is about getting pleasure out of being the parent of the child. It is about feeling you are doing a good enough job as a parent, valuing your child and their achievements, and about the child's ability to show affection. Some children with severe intellectual impairment never really recognize their parent, or understand what a parent is – they are happy with any person they feel they can trust. Others have problems with social understanding, interacting with others and showing affection. These difficulties are rare in children with Down syndrome who often show high levels of affection, and for whom social development is their strongest area (Chapter 8).
Parents who have not come to terms with the disability or find it difficult to value their child do not feel fulfilment. These parents often give the child less attention and praise, make more negative comments when talking about the child, and show the child less affection. These children often have more behaviour problems. Whether the lack of attachment is the cause – or the result – of the child's behaviour is difficult to know. Fortunately, this is a small group and we have consistently found that well over three-quarters of parents have good relationships with their children.
Other parents appear to focus all their attention on trying to remedy the child's disability; they may lose sight of their parenting role, and with it fulfilment in parenting the child (see later).
If parents find they cannot value the child, they need to examine their beliefs and feelings and possibly seek professional help or talk to others. It can help to learn about the complexity of child development, how to observe the child, and ways of encouraging their development. With such knowledge, some parents begin to focus on the possible and take pride in their own and their child's achievements – simple things for typical children gained after considerable effort. In the first parent workshop we ran, we gave parents a development checklist like those used by professionals in assessments. They went home and ticked off things they saw their child do. At the next meeting nearly all the parents talked about how much the child could do and how surprised and proud they felt.
What can we expect?
Studies based on groups that include the full range of children and adults with Down syndrome (Chapter 10), have shown:
There is a greater chance of them growing up as pleasant and amiable people than having major behaviour problems and being difficult to manage. But the management techniques and resource demands are different (Chapters 8 and 9).
Before the age of five years they are very likely to be able to walk (most have started to walk around 2 years of age), feed themselves (but not cut with a knife), be toilet trained with a few mishaps (although wiping oneself properly can take a long time to learn), to have some words and phrases and to be able to communicate basic needs (Chapter 10).
Some speak very well and have started reading before five years of age; most have a small vocabulary and, together with gestures and signs can communicate for everyday purposes. A few fail to develop reasonable communication skills (Chapters 8 and 10).
As young adults it is more likely that they will be able to hold conversations, have friends (in some cases intimate friendships), and a range of interests, than that they will be profoundly intellectually disabled with little communication, poor self-help skills and few interests (Chapter 10).
There is a greater chance that they will be good natured and attractive young people, than that they will be hostile, aggressive, sullen and difficult (Chapter 8).
Attitudes, expectations and opportunities
The above description is about people with Down syndrome today who have benefited from changes in society's attitudes, beliefs and expectations of them, and who consequently have greater opportunities to engage in life from birth (Chapter 8). In the early part of the 20th Century, many people with Down syndrome lived in large institutions and were deemed unable to profit from life experiences and education (Chapter 10). Even by the 1950's, an eminent researcher stated that after adolescence they lose all the characteristics that made them delightful children, and that they become listless, uninvolved, silent and dull. Some do 'lose their spark' but it is not inevitable, and these descriptions are more about how the people were treated than about their innate capability.
I think these positive changes have had a greater impact on the lives of children and adults with Down syndrome than research on their intellectual and psychological abilities and remedies, therapies and treatments (Chapter 12). If I am correct, the message is that we can make a huge impact on their lives by sorting out our own and others' attitudes and beliefs, and then by creating a positive and expectant environment within which children with any disability are given opportunities to develop to the best of their ability.
In developed societies the change towards a much more positive outlook has resulted in the provision of support services and a policy of inclusion in the community. It is recognised that:
People with Down syndrome do best when living in the community, rather than in large institutions, at first with their families and then more independently.
Families cope better if they are supported and resourced, not stigmatised or isolated.
Consequently there is:
Increasing guidance and support for parents, including education from birth and help with child management, which should:
–Help the children to become more skilled and independent, and reduce behaviour problems
–Help parents avoid becoming isolated and making the child too dependent on them.
An increasing willingness to include children with Down syndrome in everyday activities such as gym clubs, cubs, scouts, swimming, horse riding and, for many, enabling education in mainstream schools.
In later childhood and adulthood, there is access to college education, skill training or work preparation workshops, organized sports and recreational activities. More and more adults with Down syndrome are living in houses or apartments in the community and provided with support (Chapters 10 and 13).
Parenting and telling others
Two issues that parents often ask about when I first meet them, are how they tell others the baby has Down syndrome, and what to do to start to help the baby.
Excerpted from Down Syndrome by Cliff Cunningham. Copyright © 2006 Cliff Cunningham. Excerpted by permission of Souvenir Press.
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