Empowering parents and families - is this the way to meet family needs?

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Sue Buckley

Abstract - What do we mean by the statement ‘empowering parents and families’? It appears as one of our aims on all our publicity. By exploring what we mean by this statement, I am putting forward our views about the needs of families and how services should aim to meet them.

Keywords - Down syndrome, Families, Empowerment

What do we mean by the statement ‘empowering parents and families’? It appears as one of our aims on all our publicity. By exploring what we mean by this statement, I am putting forward our views about the needs of families and how services should aim to meet them. I hope you will respond with your comments on the article, as I am sure that not everyone will agree with us and we would value a letters page as a forum for debate.

We say that we are endeavouring to

* enhance the lives of children with Down’s syndrome and their families

by

* empowering parents and families
* promoting children’s development
* advancing understanding
* informing practice

I feel sure that the last three are much more straightforward to interpret than the first. We promote children’s development and inform practice by providing advice and information to parents and professionals on how to help our children to overcome their specific developmental difficulties, through individual assessments, school visits, training events and our publications. We advance understanding by conducting original research studies and by disseminating the findings of both our own work and all the other research work going on around the world. But how do we empower parents and families? Why did we choose these words, with the emphasis on empower? Why is this the first of our goals? What are we trying to achieve?

We chose the word ‘empower’ deliberately to define what we are trying to offer to parents and the rest of this article is devoted to exploring what we mean by ‘empowering’. We put parents and families first on our list as we believe that it should be our first priority. A child’s most valuable asset is his or her family. The most important influence on any child’s development is their family experience - the love, care, relationships and opportunities they experience with parents, brothers and sisters, grandparents, cousins, uncles and aunts. The most effective way to promote children’s development is by promoting the well-being of their family.

So, what is so special about this word ‘empower’? Is it just a fashionable piece of jargon that we picked up? Well, it may be fashionable, but that is not why we chose it as the best word to describe what we are trying to do. We could have used ‘helping’ parents and families or ‘supporting’ parents and families but somehow both words imply the need to prop up people who are not coping. Most families we know are coping admirably. During the past twenty five years, I have had the privilege of meeting hundreds of families and I have always been impressed by the way in which the majority find the personal resources to adjust to the fact that they have a child with a disability and to continue to lead ordinary happy, family lives as well as meeting the special needs of their special child. That does not mean, of course, that these families do not have times of difficulty and stress but they manage to cope with them. All families experience times of stress for all kinds of reasons - managing life successfully is about knowing how to cope with crisis, change and loss.

Research studies support my personal experience in showing that most families, including brothers and sisters, do not show any permanent or long-term ill effects as a result of parenting or growing up with a child with Down’s syndrome (1,2). In fact, a number of studies suggest positive benefits, including increased communication, cohesiveness and warmth in families and increased maturity, altruism and tolerance in brothers and sisters.

However, while most families do cope admirably most would acknowledge that it has been a struggle at times and that stress could have been reduced at various times if more of the right kind of support, information and services had been available. In our view, the ‘right kind’ is the key here and this is why we chose ‘empowering’.

The dictionary definition of empower is ‘a process by which a person gains mastery or control over their lives’. In our situation, we perceive the need to provide parents with the knowledge and skills they need to be in control in this new situation, parenting a special child. We assume that they are perfectly able to run the rest of their lives, but that in the early days after a child’s birth and later as new issues arise, they may need new information in order to remain in control and in order to be confident that they are able to meet the needs of everyone in the family.
How professionals can empower

For us, ‘ an empowered parent’ is one who is confident that they are able to parent their special child and one who is able to be an informed consumer and successful advocate on behalf of their child. As we state in our principles, we believe that parents know their own children better than anyone else. Our task is to be an expert resource to be used by parents so that they gain the knowledge, understanding and skills that they feel that they need in order to feel confident and in control as parents, consumers and advocates.

We try to pass on our knowledge and skills in such a way that parents become autonomous. Our goal is to help the family to help the child in the way they want to. This means that we try to adopt a style that facilitates, enables and supports not a style that is organising, controlling and taking over. The former style is expressed in our principle - ‘parents and professionals are equal partners’. (Actually I think the balance should be parents first, as consumers and that professionals should see themselves as offering a service which can be accepted or refused and which should always be open to scrutiny and evaluation).

Professionals need to be aware that, in offering services to children and families, it is not easy to avoid distorting family life by the demands of the service - be it home-teaching or physiotherapy. It is not easy to avoid invading the families’ privacy, to avoid giving too much help in such a way that it creates dependency rather than autonomy, to avoid imposing their own values and judgements on the family on the assumption that the professional knows best. I think it would be fair to say that many professionals are still some way from seeing themselves as offering services to parents who are consumers with a right to evaluate what is offered and to say no thank-you if they wish.

Many professionals get little training in interpersonal skills, communication or listening skills. If they are teachers, doctors, speech therapists or physiotherapists for example, their training focuses on the specific skills and knowledge required to help the child. Rarely is much training time devoted to considering the family’s needs or developing helping skills. For this reason, a new book entitled Counselling parents of children with chronic illness or disability by Hilton Davis (3) is very welcome and should be recommended to all who work with children with special needs. Hilton Davis is a Chartered Clinical Psychologist and Head of the Child and Adolescent Psychology Services at Guys Hospital in London. He has many years of experience of working with sick children and their families.

The book is full of useful ideas, many of them illustrated by quoting the comments and experiences of parents, so really conveying how parents feel and the sort of professional approaches that they value. The author has the same views as we do about empowering families.

He sees three general aims for helping services:-

1. "To facilitate the ways in which the parents and all other family members adapt to the child and the disability, psychologically, socially, physically and in their daily lives, minimising and preventing disruption as far as is possible.
2. To enable the parents and other family members as best they can to meet the needs of the child who is ill or disabled, without neglecting their own needs.
3. To enable the child who is disabled to have the best possible quality of life, by curing or minimizing the effects. This involves reducing disability and handicap, and facilitating the child’s adaptation to the disability - psychologically, socially and in the tasks and pursuits of everyday life."

He goes on to suggest that the specific objectives of helping are:

* "to support the parents emotionally and socially throughout the adaptation process, encouraging them in all they do;
* to enhance their self-esteem; helping them feel good about themselves;
* to increase their feelings of self-efficacy, enabling them to feel in control and able to cope;
* to help them explore their situation, so that they will be better able to understand and anticipate events, in terms of the disability and its consequences generally;
* to enable them to communicate effectively with and support the child who is ill or disabled, so as to maximise her/his psychological well-being;
* to enable them to develop general coping strategies, allowing them to analyse problems, determine options and devise ways of dealing with any situations that may arise;
* where there are two parents in the family, to help them feel good about each other and to encourage open communication and mutual support;
* to enable parents to find their own support systems as necessary outside the immediate family;
* to help them communicate appropriately with professionals in order to work in partnership;
* to enable them to make decisions for themselves, in consultation as necessary, and to foster independence

Hilton identifies that the key to effective helping is the relationship that develops between parent and helper. The ideal relationship is a partnership, not a dictatorship in which the professional, by virtue of knowledge, is assumed to be superior. It is not only professional’s behaviour which may put them on a pedestal as expert rather than partner, all too often parent’s own expectations and behaviours lead to them putting the the professional on the pedestal and deferring to them.

It would be an interesting exercise for all of us to reflect on Hilton’s criteria and think how our own experiences have matched up to them, whether we are parents or professionals. We probably all know some people who would score highly in their dealings with parents and others who are doing less well. Parents groups might like to discuss their experiences with a view to feeding their views back to local services and encouraging change if necessary. Maybe they should read the book or invite Hilton to arrange some training! Service providers might like to evaluate their own services against these criteria, most would identify the need for training for staff in order to improve.
Self-empowerment

While I am all for excellent services, I think that parents can do a great deal to empower themselves and I base the following suggestions for families to consider on research which has highlighted the positive value of all these strategies.

Deal with feelings - or they will undermine your ability to function well as a family and create stress which could be avoided. Try to share feelings and worries with your partner, parents and children as appropriate, try not to bottle them up as if you do they will not go away. They will remain unresolved and may become a barrier to open, trusting family relationships. Hidden negative feelings may also spoil your feelings towards and relationship with your child.

Dealing with feelings takes time, especially dealing with the feelings provoked by hearing the diagnosis. Give yourselves time to adjust and seek someone to talk to outside the family among friends, other parents or professionals as you feel appropriate. Beware of throwing yourself into so much activity outside the family in the first few months, such as fundraising for a support group or campaigning for the services you realise your child will need, that you inadvertently neglect your own child and family and avoid dealing with your own feelings. Recognise that there will be future times when things will be difficult again and identify ongoing sources of support.

Get information - seek out accurate information on your child’s condition and needs, on local services, on benefits available and on your child’s rights to access services. The more knowledge and understanding of these issues that you have, the more confident you will feel about making your own choices about what you want or do not want for your child.

Seek practical support - make use of all the services, community activities, friendships and social networks in your local community to help you to create opportunities for your child and to share some of the caring. Make full use of mother and toddler groups, playgroups, leisure and activity clubs, church groups, respite care, baby-sitters and neighbours to both expand your child’s range of friendships, learning opportunities and social experience and to give you some time for yourselves and other children in the family.

Learn new skills - to teach your child and to manage difficult behaviour. It may be necessary to increase your parenting skills in order to help your child as you would wish as he or she may need to be taught skills that most children acquire without explicit teaching. One of the great strengths of home-teaching programmes is that they should teach parents how to teach and this skill can be used to help the child throughout life. The home-teacher may also be able to teach you the principles of good behaviour management so that you can avoid allowing your child to persist with disruptive behaviour either by anticipating it or by nipping it in the bud as soon as you realise it is happening. A child who is difficult to manage and disruptive to family life causes a great deal of stress to all family members. Sleep problems are particularly undermining for everyones health and well-being. If you do not have access to a home-teacher who can pass on these skills, the local learning disability community nursing service and the clinical psychology services should have people who are well-trained in behaviour management and could help you.

Join a self-help group - to gain from the experience, understanding and support of other families who are dealing with the same situations. Parent groups can be a considerable source of emotional as well as practical support and many life-long friendships develop among families who join such groups. Parent groups can also be a powerful force for social change and improvement in services, wielding much greater power than a family campaigning alone. They can also provide advocacy for individual families when needed by providing someone to accompany a family to review meetings for example. So often, as parents you will be greatly outnumbered by professionals at meetings at which really important decisions for your child are going to be taken, and it is often extremely difficult to achieve the outcome you feel is in your child’s best interests if you are in the minority. Taking along a friend to advocate with you can make all the difference. As one parent, reflecting on her own experience of attending a review meeting, put it "Don’t go alone, they (the professionals) don’t!"

Take care of your family and be prepared to say ‘no’ to professionals. Not every service and piece of advice on offer is right for you or your child. Have a great deal of confidence in your own feelings and intuitions about your child. I think that it is important to try and decide what you actually need, what you want for your child, what you feel is best for your family, recognising that every decision that you make which involves doing something for your special child will have an impact on everyone else in the family. As I think that the single most important thing you can do for your child is to ensure that they are a much loved and valued member of a happy, well-functioning family, it is vital that the choices you make, for example - to participate in extra therapy or activities with the special child, do not place such extra demands on you that they threaten the well-being of the family as a whole. Even if the demands are not such as to threaten the well-being of the family, it is also important that they do not change the families way of life too much. Ideally you should plan to be the family you were hoping to be before you knew of the baby’s extra needs, enjoying the same activities and life-style as far as possible and recognising that the needs of all family members including parents are equally important.
Take charge - become an informed consumer and advocate on behalf of your child.
Empowering our children

In the end, our goal as families and as professionals should be to empower our children. We need to give them the skills, knowledge and experience and the self-esteem and self-confidence to lead full lives in a community that values all it’s members. That is a tall order and sets an agenda which could be the content of another article as it implies that we need to change the attitudes and values of our society as well as to love and educate our children.
Empowering each other

However, I believe that the only way to even begin to try and achieve the best we can for our children is for parents and professionals to recognise that they have to work together and empower each other. Parents need professionals to share their knowledge and expertise with them and to share in promoting the development of our children by providing the range of services that the children need. Professionals need to learn from parents as parents understand their children’s needs in the context of the family better than any outsider can and parents can see the weaknesses and shortcomings in services from a different perspective than professionals. As one professional put it recently "Professionals don’t grow unless parents water them!"
References

1. Byrne, E A, Cunningham, C C, Sloper P (1988) Families and their children with Down’s syndrome: one feature in common. London: Routledge
2. Crnic K A (1990) Families of children with Down’s syndrome: ecological contexts and characteristics in Beeghly M & Cicchetti D Children with Down’s syndrome. Cambridge: Cambridge University Press.
3. Davis H (1993) Counselling parents of children with chronic illness or disability. Leicester: BPS Books