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We are working as a psychologist
and a counsellor respectively at Tomteboda Resource Centre in Stockholm,
Sweden. The Centre is giving multiprofessional support to children and
youth with visual impairment and to their families. It covers from new-born
babies to nineteen year old adolescents and is nation wide.
Among our responsabilities
are the early parental courses. At these courses parents from the whole
country, that have recently had their children diagnosed as having a visual
impairment, participate. The impairments these children have are considerable
- their whole process of growing up will be affected.
What we see clearly at these
courses are the specific circumstances these parents face. They believe
themselves totally alone with no other parents in a similar situation to
refer to. Often it is also very difficult for their surrounding to understand
what it involves having a visual impairment, especially if the child is
partially sighted.
The parents describe it
as being of outermost importance to have the opportunity to meet other
parents in the same situation and also to meet a psychologist and a counsellor
with experience of children and youth with visual impairment.
We feel that this is a very
meaningful and stimulating work.
Focusing on the parents
In our work we focus on
the parents of the child with visual impairment - 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 as they
now have a child they are expected to love and care for. The parents' need
for mourning is interfered with by the real child's needs. The mourning
becomes burdened with guilt and 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 eventually meet and love the real child. Actually we are
talking about two different processes; the adaptation to the real child
and the grief over the lost child.
Becoming the parent of a
functionally disabled child, puts most people in a new and difficult situation,
where previous experience and knowledge no longer are sufficient. This
we call a crisis.
Usually, when we use the
term "crisis", we mean a traumatical crisis triggered by an external event.
But our experience after many years of meetings with parents, is that parents
with a disabled child don_t experience a crisis that is time-limited. The
crisis that occurs when the diagnosis is made, is rather the first phase
in a long process.
These parents go through
these crisis each time they have to make decisions they find impossible
and also later in life, when the Dreamchild don't match the real child.
In our daily work, we have
found a theoretical model that has given us supplementary knowledge, which
helps us to better understand these families. The model is taken from the
associate professor Anders Gustavsson's thesis. It describes living with
a functionally disabled child as a lifelong adaptation, with three initial
phases:
The discovery
The discovery of the child's
defect means a personal catastrophy, which affects the parents in three
different ways.
First of all, they loose
the child they dreamt of and by reason of that, they understand that parenthood
will not be as they have planned.
Secondly, they consider
their child's defect as a personal failure. They have not been successful
in having a healthy child and therefore they don't 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
This phase is characterized
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 set 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 within
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.
Every individual solution
is depending on the actual situation in the family and as the child 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.
The background of the project
We find that parents often
come much too early to us at TRC. They have not yet secured a foothold
in their new situation and they are not capable or willing to share their
experiences with others. We have come to the conclusion, that parents don't
get the support they need from the consultant in their home community,
so they turn to TRC instead. The reason for this could be, that the consultant,
who becomes the hub around which the life of the family spins, feels inadequate,
when it comes to guiding the parents. She is trained specifically for the
needs of children and not for the needs of the parents.
The parents are very important
for their children at all ages, but we know that it is crucial for the
future of the disabled child, how the parents handle the initial crisis
and the subsequent prolonged process of grief and adaptation, that we mentioned
earlier. To be able to understand the needs of one's child, to be able
to stimulate and train it to achieve optimal progress, it is essential
that the parents have had the possibility to thoroughly go through the
complex feelings evoked by a disabled child.
To be able to reach the
child, we must first be able to reach the parents.
When we all meet a new child,
we also create images and dreams around this child. We too create a Dreamchild
and in our eagerness to help the child, we easily forget the parents. But
who is the most important to the child? We or the parents?
As professionals, we often
feel in accord with the parents, but often this accord is only on the surface.
Which are the aims of the parents? Do we as professionals have the same
aims? Which aims do the parents have that don't correspond to ours?
Families having functionally
disabled children are frequently in contact with various authorities responsable
for the habilitation of their child. Representatives from these authorities
influence and put pressure on the parents by showing in different ways,
what is expected from them. The parents alone do not have the responsability
for these children in our society, but the authorities involved do also
feel this responsability.
According to the research
of A. Gustavsson, this sharing of responsability delays and makes the adaptation
to the new situation more difficult for the parents, because they don't
get the chance to try their own solutions.
A couple of years ago, a
survey was made throughout Sweden, regarding the support that was given
to children with a visual impairment. It showed that there were very big
variations.
Swedish Association of the
Visually Impaired, which is the organisation looking after the interests
of persons with visual impairment, at the same time declared, that there
were big variations also within the community of Stockholm and that there
must be an improvement.
The Special Care Committee
in Stockholm, also saw this need, and demanded funds for a project intended
to find a model for how to organize the counselling and support at an early
stage to families having children with a visual impairment. We both work
half-time in this project and half-time at the TRC.
The Project
In this project we have
had the possibility to form a model for support at an early stage to these
families based on both research and our own experience and conviction.
The task of the counselling
team is as follows:
Co-ordinate the support
according to the needs of the families.
For various reasons, the
co-ordination of the different resources in society does not always function
satisfactorily.
Ensure that a habilitation
plan is done for each child. This plan should be up-dated on a regular
basis.
Be the fixed point of connection
for the parents.
The parents should have
the possibility to express their thoughts and needs to the team and the
team should take the necessary steps accordingly.
Increase the understanding
and knowledge of the consequences of having a visual impairment among personnel
working with habilitation.
More than 50% of these children
are also functionally disabled in some other way and because of this, they
come in contact with specialist in other fields, who lack knowledge of
sight related problems.
Build a model for how to
counselling families at an early stage.
Handle the psycho-social
support to the families.
Here, today, we will concentrate
on the latest mentioned point, as our focusing on the parents is what is
new in our model.
As soon as a child has been
diagnosed by an eye specialist, a meeting is set up with the counselling
team. The psychologist and the counsellor meet with the parents alone,
without children.
Our experience is that the
mother and the father seldom have the same feelings and reactions to their
child's impairment due to their individual experiences and because of this
their questions differ. Also the parents support each other at this meeting.
This first meeting aims
at analyzing the situation of the family and its needs. By focusing on
the adults in the family, the parents are given the possibility to express
their feelings and describe their experiences and their thoughts regarding
the disabled child and the consequences of the impairment and the new situation
that results. At the same time the counselling team has the opportunity
to present their means to help the family.
We have seen that the coordination
and thereby the result is better, if the different means of support are
geographically concentrated. If this is not possible to arrange, there
has all the same to be frequent meetings between the staff, so they can
exchange their experiences and learn more about the other fields involved.
The period of time that
elapsed before the diagnosis is also discussed and often the parents describe
the happiness of having this wonderful, little creature.
Then how they started to
suspect that there was something wrong with their child.
The parents often describe
how they over and over again went from hoping that their suspicions were
wrong to feeling convinced that there really was something wrong.
Although there were suspicions,
the diagnosis by the eye specialist came as a chock. Many parents can exactly
describe the words of the doctor giving the diagnosis, but they cannot
recall what was said afterwards. Often they don't even remember how they
left the hospital and went home.
All these dramatical descriptions
of how the diagnosis was conveyed to the parents have convinced us of the
importance of having another appointment with the doctor shortly after,
so all questions that have arisen can be dealt with in peace and quiet.
That both parents are present at the first occasion, when the diagnosis
is conveyed, is imperative.
Furthermore we discuss the
feelings evoked by the diagnosis. Questions that often arise are WHY? What
have i done? and Why me?
We make the parents understand
that we can take in and bear these difficult feelings and reactions without
hastening the process of grieving or trying to make grief go away by comforting.
We also convey to the parents that we recognize their feelings and reactions
from other parents in the same situation.
We listen to the thoughts
of the parents. Have they earlier met anyone with a visual impairment?
What is their image of a person with a visual impairment? True or false
doesn't really matter. It's still the image the parents have. To us it
is important to listen unconditionally without expressing our own opinion.
The thoughts often regard the future of the child. In this first phase
the parents see their child in the lifelong perspective. Can my child get
a driver's licence? Can it have a family of its own? Can it have a profession?
The parents also think of the limitations caused by the impairment. They
feel sorrow for everything that is important for them out of the perspective
of the fully sighted and which their child will not be able to experience.
They grieve the loss of their child's possibilities.
At this point we have to
show the parents our conviction that there almost always is a solution,
that life will go on and that it still is possible to carry out most of
what have become important to the family. We also try to convey our conviction
that it will not always feel as difficult as now.
Together with the parents,
we discuss the fact that the older generation as well as uncles and aunts
go through the same reactions as the parents themselves do.
These meetings take place
on a regular basis and we find it important with respect to the parents
to give them the knowledge we believe to be right at this particular moment.
We give the parents information at the pace they can handle. Sometimes
they signal "I can't take any more, stop at this!", sometimes " OK, go
on, I feel ready for more information."
We give the parents the
time they need and we show them that we have confidence in the healing
process.
What causes the most uncertainty?
It is important to start from the parents need for support. As professionals
we can feel that we have a lot to give, that the parents quickly need our
knowledge. But it is important to bear in mind the words of the Danish
philosopher Sören Kirkegaard:
"If I want to succeed in
bringing a human being towards a certain goal, I have to find her first
and start exactly where she is.
A person who is not capable
of this, fools himself when he believes that he can help others.
It is true, that if I want
to be able to help someone, I have to understand more than he does, but
first of all understand what he understands.
If I am not capable of this,
it doesn't matter if I know more than he does.
If I still want to show
how much I am capable of, it is because I am vain and conceited and really
aim at being admired and not at helping.
All real helpfulness starts
with humility regarding the person I want to help and because of this I
must understand that helping is not to reign but to serve.
If I am not capable of this,
I am not capable of helping."
Neither must we make the
parents feel, that their child belongs to the experts and that they themselves
lack competence.
Our experience is that also
the parents wishes to do something tangible for their child. This often
results in a pre-school consultant working parallelly with us. She focuses
on the child while we focus on the parents. The aim is to make the parents
see their child as it is with both its limitations and possibilities and
thereby be able to dream new realistic dreams.
From the child's point of
view the diagnosis implies something positive. When the parents have gone
through their inner process of change and feel secure in their role as
parents to a child with a visual impairment, they have the possibility
to understand the needs of their child and thereby stimulate and train
it to achieve optimal progress.
MUITO OBRIGADA!!