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WORKSHOP-TOPIC 7

PARENT-FAMILY INVOLVMENT

 
 

MASTERY PROCESSES IN FAMILIES WITH A DISABLED CHILD

 

HANNE LINDAU



Biodata

HANNE LINDAU has been vice-director at the Institute for Blind and Partially Sighted in Copenhagen, Denmark since 1992.
Hanne Lindau is master of psychology, speach-hearing-reading therapist and has a long carreer in developing programmes for integration of visually impaired school children in Denmark.
Hanne lindau has been counsellor to the danish ministery of education for 5 years, chairman 8 years of the danish board of regional counsellors for visually impaired.
Hanne Lindau has published several articles on the organisational and educational development of the danish model of integration of visually impaired in public schools and higher education and has also been co-editor for 5 years on VISUS, Scandinavian Magazine for educators of visually impaired.

Hanne Lindau
Institute for the Blind and Partially Sighted
Rymarksvej 1, 2900 Hellerup-Denmark
Ph:004539624100-fax:+4539400405-E-mail:hl@ibos.dk 



 

Giving birth to a severely impaired child is for most parents a dramatic experience.
Nobody expects a defective child. Everybody expects a healthy, strong and gifted baby to have a longlasting prosperous lifecareer and who gradually can take responsibility for its own life, getting friends, family and children of its own and be a natural, respected member of the society he is a member of.
Looking globally on childbirth we will of course find a lot of different cultural patterns: Some societies have better acceptance of impairment than others but in the part of the world where I come from, it is mainly considered a disaster.
Most western industrialized countries is deeply influenced with carreer struggle and competiveness, stress, loss of human and family values, abuses of different kinds and divorces.
Looking back in history it was even well accepted in the nordic countries to throw out the defective child to the wild animals in the woods.-But this is fortunately long, long ago. We now live in highly democratized welfare societies where any impairment is cared for through legislation, economy, counselling and education.
But still I clame that we have wild animals to fight on a psychological level.
These are the attitudes among parents and professionals surrounding the impaired child.
These are the communication patterns and mutual understanding between parents and professionals.
Working as a professional- for instance with blind children- you will often find great diversities in attitudes and thus a breakdown in the communication between parents and professionals.
One can often ask the question whether the advise and help offered is a hinderance rather than a help.
The idea of todays paper on THE MASTERY PROCESS is to reveal some of the psychological traits which is crucial in understanding what is going on in families with a defective child and thus hopefully open up new doors to the professional understanding.

The following 4 aspects are of importance to understand the familiar MASTERY PROCESS:
I
The initial stage: An unusual kind of sorrow and grief
appears on the family stage.
II
Beyond the initial crisis:Impact of professionals

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III
Known reaction patterns in the family leading to
succesful mastery.

IV

The role of values in counselling and guidance.

I. AN UNUSUAL KIND OF SORROW AND GRIEF:
Psychological research within the last years have revealed, that different life situations causes different reactions to loss. The prevailing attitude has been, that the consequence of a loss is the universal emotional state called sorrow, which after some time will disappear and the individual will regain emotional stability.
Today common knowledge is that at least 4 sorrow states has to be considered when working as professional:
1. The normal process, where the individual will achieve balance in life without fear of what future might bring of both good and bad events.
2. The concealed proces where the person does not allow himself to face facts often being too occupied with everyday carreer life.(It is not socially in to be a person plunged in sorrow when you live in most of the western societies).The very uneasy emotions involved in the grief process is rejected resulting in inability to contain strong emotions to appear later in life. Maladjustment and too rigid selfdefence and fear of taking new chances in life. This way of lossreaction is said to be the most common in industrialized societies.
3. The cronic proces, where the person nearly totally neglects the loss and will torture oneself and the family in a rigid pattern of remorse and constant idylizing the loss and rejecting to thread new paths in life at all.
4. The Perpetual process often found among parents with a defective child:
The exposed reactions are similar to other loss reactions, but these parents do not have a real loss like when a beloved person dies. They have a child, but a defective one. Their dreamchild never appeared, they have to confront themselves with caring and parenting of quite another kind of child. This child is moreover an attack to the self confidence because a child reflects the parental idendity. Moreover is it not well accepted to reject the child now it is there. You have to give care and love and hide your own inner feelings of failure and reluctance. Nobody will understand you if you expose strong feelings of grief in this situation. It is forbidden. Due to social pressure most parents tend to hide their feelings on the surface and play the happy parent role often resulting in overprotection or emotional rejection.
The concealed emotions will often pop-out and expose themselves as the child develops and typically everytime the child passes a developmental milestone.
This reaction pattern is often confusing for professionals who tend to accuse the parents for not having accepted the childs defectiveness and the mutual communication will often break down.
A professional understanding of this unique parental reaction will secure a sound and prosperous communication all for the benefit of the impaired child.

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II. THE IMPACT OF PROFESSIONALS.
It is not common among parents to say no to professional guidance. Very quickly the parents get involved with medical, social and educational staff. Each branch tend to have the idea that they found the ideal code for solving the familiys problems with the impaired child.
Parents often feel overwhelmed and many families will have up to 20 different professionals to communicate with. This drags energy from other important life demands as other children in the family, friends and relatives and parents are often gradually drawn back from a normal family pattern. In many western societies there is a growing tendency to overcrowd these families.
I think it is an important future goalsetting to prevent the families from overcrowding by finding better ways of multidisciplinary cooperation.
Recent resarch have revealed, that there are only 3 demands wanted by parents from professional guidance:
1. As many local and regional provisions as posssible.
2. Continuity as to professional persons involved and in future plans.
3. The best possible professional advice.

III: STRATEGIES LEADING TO A SUCCESFUL MASTERY-PROCESS.
The following statements are extracts from various research materials focusing on conditions in impaired families. It is daring to say impaired families but I do it, because many families gradually discovers that it takes a lot more than one ever imagined to be a family with a handicapped child. They are more or less dancing on egg-shells because this special situation put higher demands to flexibility and ability to change frequently according to the childs situation.
Which strategies can we trace when we open the doors to the succesful families?
Some of the traits we find are rather controversial and not to be found in traditional textbooks used for training social and educational counsellors.
In all we find 7 prevailing traits which these families use in their mastery proces.
These traits have priorities meaning that number 1 is the most important and further on ending with number 7.
These strategies are to be considered as the families own working tools, to sustain succesful mastery. Some of them are unconscious, but to be traced if you look thoroughly. Others are very conscious and have developed as results of the families own adjustment proces:
1. Marital concordance and mutual respect.
This implies full respect on both parts, confidence and trust. Willingness to set common goals and to carry them out in practice. It does not mean that these families are totally free of conflicts and disagreements, but they end up solving them through negotiation and compromising on fully agreed terms. In these families you will never hear farther complain on mother or vice versa.
They have a common life project and nagging conflicts from the period before the birth of the defective child are set aside and buried.
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2. Flexibility in roles.
In these families you will often find a very unusual pattern in the role division between father and mother.
They do not care much of what are social conventions or traditional expectations. They do what is needed to do to when it is needed in order to secure the best possible everyday life for all members of the family.

3. Networkers.
These families seem to be extraordinary good networkers. They support useful familiar,relatives and neighbour nets from the time before the child was born and if they do not have suffucient nets, they tend to establish them. They are the give and take help kind of persons. They do not solely drag or profit on others support, they are capable of offering it themselves.
4. High degree of selfconfidence.
All members of this families seem to have a high degree of selfconfidence and reliance.
The outspring comes from the parental platform and spreads through all layers of the family. They may not be born on the sunny side of life but the challenge with the defective child seem to make them fight for a positive and selfreliant outlook on life.
5. High deegree of solidarity implying all members of the family. There is not much selfishness in these families.If one member is loaded with problems it is considered to be a common challenge to find acceptable solutions.
6. High deegree of interaction with the surrounding society and high degree of sports and creative activities for all members. They do not cling to the wall- papers of their home, just looking out at life from a rigid isolated position.
7. Satisfying job- and career positions no matter of which kind and of what educational level and of what social status.The only thing that seems to matter is that you like to do what you do.

IV. THE ROLE OF VALUES IN COUNSELLING.
If you think twice of the above mentioned 7 strategies you might start wondering of what the underlying cues are to what is going on in these families.
The answer is to some extent very, very simple and to another extent extremely complicated.
From a psychological point of view it is a question of 2 main kinds of values:
Material and immaterial values.
We are not to decide which values are best for the families with are involved with, it is their choice, but it is a good idea to look out for which patterns are prevailing and what you- the professional should advice. A large amount of materialistic values will easily leave you lonely the day they are gone whereas a large amount of immaterialistic values will bring you safely past difficult lifechanges.

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SUMMARY.
The mastery process in families with impaired children seem to have controversial strategic traits where the hitherto attitudes on money, education and social status as such are less important than mutual respect, flexibility and self confidence.
The professional challenge is not to overcrowd the family with all kinds of posssible equipment-for instance- but to look and listen carefully to what the families own resourcepotential might bring out.
A very rich and well off family with high materialistic life demands might be poorer off in their mastery process than a family who is able to find new and courageous solutions and is willing to constant reevaluation of their Lifesituation.

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