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PROFESSIONAL NETWORK - A UNIQUE MODEL IN SWEDEN

To become the parent of a child with a permanent disability puts most people in a situation where their previous experience and normal way to behave in certain circumstances can no longer guide them.† We are talking about a personal crisis.† Every individual reacts in his or her specific way.

Now we know that the way the parents handle the crisis that occur when they first hear about their childís disability is decisive of the childs future.† How the parents handle the subsequent process of grieving and adaptation is also of vital importance for the child.† The parents must get a chance to go trough the painful feelings evoked by having a functionally disabled child.†

Only then they can help their child and understand its needs and capability.† In order to reach the child and give it a chance to make as much progress as possible we must first reach the parents.

Most parents of a child with a visual impairment have never come in touch with this type of disability, which is very unusual in children.† They do not have friends or relatives to learn from and therefore they feel completely alone in their new situation.† Also, it is often difficult for them to understand what it really means to have a visual impairment.

The Counselling team, which consists of one counsellor, two psychologist and a special education teacher, is a unique initiative in Sweden.† When we first started in August 1996 there did not exist early psycho-social support for parents, nor an elaborate co-ordination system between different fields as well as between different authorities.† Each authority is responsible for a certain type of support for parents of a child with a visual impairment and an organised co-operation between them was almost non-existent.† It was unclear which authority had the overall responsibility for the rehabilitation.† Quite understandably the parents found that the support was fragmentary and badly-arranged.

It became a task of the Counselling team to work out an efficient rehabilitation plan, where the specific needs of each family are in focus. After five years we feel that we have found a model which works very well.

Our starting point, as described above, is that we are working from a crisis theory point of view.† Our conviction of the superiority of this method is based on various research findings as well as our own long experience of meeting families with children with visual impairment and children who are functionally disabled in some other way.

In Stockholm the parents meet with the Couselling team as soon as they have first been informed about their childís visual impairment.† To begin with the parents worry a lot about all the things that they think their child is not able to do and will not be able to do in the future, compared to those who are fully sighted.† As a consequence they primarily foresee that the child is going to have a limited life.† Often they do not quite understand what the child is able to do and what it is not able to do.† It is particarly difficult for the parents of a child who is functionally disabled in some other way, too.

The first meetings are usually focused on these types of problems.†

Our experience is that the mother and the father usually do not have the same feelings and reactions to their childís impairment.† Due to their previous experience they have different questions and worry about different things.† Therefore every family will need its specific type of help and support regarding

psycho-social matters as well as practical matters.

A counselling team which corresponds with the needs of the specific family is constituted.† It is necessary that a functional judgement of the childís vision is conducted in order to help the parents better understand the practical consequences of the visual impairment?† Do they need advice on how to stimulate questions concerning the childís future development?† Do they still have many questions of a medical nature?†† The counselling team is constituted and different authorities might be involved according to the familyís current needs and wishes.† The Counselling team co-ordinates the work.

By meeting the parents regurlarly we know when it is time to change the make-up of the counselling team.

This method, where the family is in the centre, enables us to work in a very flexible way and to make the best use of all the recources in society.

The Coucelling team is always available for the family and constitutes the basis of every familyís professional network.† We help the parents to see their childís possibilities instead† of its problem and to realise that the are good and competent parents.

We focus on the parents - their experiences, thoughts and feelings.† When we meet a new family the scene is already set - it all started a long time ago.† In our society, parents most often put a lot of both emotional and material effort into the preparations for a baby.††† A child has an important symbolic value - a confirmation of the parents, an extension of their lives and dreams.

Every expecting mother has made a picture in her mind of her Dreambaby to which she ties emotions and hopes and around which her thoughts linger.† When she gives birth, the Dreambaby encounters the real baby.

Although there is always a difference between the two, they will eventually melt into one.†† But if the new-born is differing too much, the melting together will not happen.

When a functionally disabled child is born, the parents are hit by grief - the grief of the lost Dreambaby.† They have lost the healthy child they dreamt of.† At the same time they have a child they are expected to love and care for.† The parentsí need for mourning is interfered with by the real childís needs.† The mourning becomes burdened with guilt.† It is not unusual that the process of grieving never is allowed to start.† But, the only way to progress, is to be able to grieve and eventyally meet and love the real child.† Actually we are talking about two different processes, the grief over the lost child and the adaptation to the real child.

As we said at the start, the parents come into crisis when their previous experience and knowledge no longe are sufficient.

Usually, we mean a tarumatical crisis triggered by an external event.† But our experience after many years of meeting with parents, is that they donít experience crisis that is time-limited.† The crisis that occur when the diagnosis is made, is rather the first phase in a long process.

Each time the parents have to make decisions they find impossible and also later in life, when the real child donít match the Dreamchild, the crisis is evoked again.

In our daily work, we have found a theoretical model that has given us supplementary konwledge, which helps us to better understand these families.† The model is taken from the associate professor Anders Gustafssonís thesis.† It describes living with a functionally disabled child as a lifelong adaptation, with three initial phases:

The discovery

The discovery of the childís defect means a personal catastrophe, which affects the parents in three different ways.†

First of all, they loose the child they dreamed of and by reason of that, they understand that the parenthood will not be as they have planned.

Secondly, they consider their childís defect as a personal failure. They have not been successful in having a healthy child and therefore they donít get the confirmation of being a successful man and woman.

Thirdly, they feel guilt for what has happened to their child.

During this phase, the parents are often paralysed, confronted with what seems to be threatening to their own meaning of life.

The encounter with the new situation in life

The phase is characterised by a conflict, which has a crucial impact on how the parents learn to handle the new situation.† Taking care of the child is often very demanding and the parents have to se aside their own ambitions and interests.† This can lead to an existentialist dilemma - to let your child down or give up your own life projects.

The individual solution witin the family

Every family and the individuals within the family find their own solution how to handle the new situation.† Although the sorrow can be as hard for both parents, the mother is often affected the most, as she is often the one staying at home and taking care of the child, while the father carries on with his profession.

Evey individual solution is depending on the actual situation in the family and as the childs grows, the situation changes, and also the individual solutions changes.† Every individual solution will be reconsidered many times over the years.

We can in the parents see competing wishes within the individual, between the parents and within the family.† What is expected by society such as getting a good education, competing for a good job, being a good husband or wife, being a good parent, having good social relations etc also influences the choices made by† the individuals.† Often these demands by the society are not consistent with being the parent of a functionally disabled child.


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