|
Focus: School years
Topic: Families
Annie Behiels
Centrum Ganspoel
Ganspoel 2
3040 Huldenberg
Belgium
0032(0)26860040
Annie.behiels@ganspoel.be
1. The target group
In this presentation we focus on families with children and adolescents with visual impairment and normal to good development abilities. It covers children at primary-school age and adolescents.
2. The characteristics of the target group
Children/adolescents of the age group 6–16 and their families have a number of specific characteristics:
Ø The children/adolescents gradually set themselves more and more free from the secure relationship within the family
- they discover who they are and what they can do themselves,
- apart from the others
Ø They “attach” themselves to a larger social group, this means that they can and wish to belong to a group of peers, they can commit to others, they have a feeling “belonging to the group”
Ø Starting from a feeling of confidence in themselves and of self-reliance, they evolve in the development of skills; this makes them more independent and socially competent
Ø They evolve towards relationships of friendship and towards a more intimate relationship, including sexuality
Ø From the secure relationship that has grown within the family, the parents can now give their child more opportunities for doing things independently, for taking up more self-responsibility and developing more elaborate relationships with others. In other words: an evolution from security and control to confidently letting go more and more
We know from experience that the social and emotional development of children and adolescents with a visual handicap does not always run optimally.
Families with a child or adolescent with visual limitations can ask for home guidance, to cope with the counsellor the problems that are experienced by parents and child.
How does this go about?
3. The answer home guidance can provide
Ø We want to offer the child/adolescent and his family support in dealing with all aspects of the visual handicap.
There for:
§ we make a careful analysis of the needs of child and family
§ we determine the focus points and the objectives that are aimed at (in a medium and/or long term)
§ we indicate in which way we will work = methods
§ we determine the frequency of the guidance visits
§ (if needed) we enlist the cooperation of other (regular) services or social services
§ we make sure there is a regular evaluation and adjustment of our guidance
Al these facts are formulated in the plan of action. The contents grow in cooperation with the parents and, if possible, with the child/adolescent
Ø The main focus points and objectives are:
§ dealing with the practical and
§ emotional consequences of the handicap
§ learning certain skills
o practical skills (coping – use of aiding tools)
o social skills
How do we work at this?
§ We give information and concrete suggestions
§ We offer educational advice
§ We support integration and inclusion, at school (together with a peripatetic teacher) as well as for leisure activities
Ø As far as the methods are concerned:
§
We work with children and parents separately, as well
as with parents and children – if necessary with brothers and sisters or
grandparents – together. The guidance takes place by means of conversations, training
situations, game situations …
§
We have meetings with teachers and counsellors in the
wider environment of the child/adolescent (e.g. leisure time)
§
We cooperate in courses
§ We organise group meetings for children.
§ Parents (and possibly grandparents) can meet each other in discussion groups and thematic meetings.
4. A case study
William is a 14-year- old boy. He has a normal intelligence. He is the youngest in his family: his older sister is 21 and studies psychology.
The mother is solely responsible for the education of the children: William has met his father only a few times.
The family is closely-knit. The mother has always looked to her daughter for a lot of support. Including for William’s education.
William is severely visually impaired as a result of the retina disorder retinitis pigmentosa. Consequently he has a very limited vision, as if he’s looking through a tube. He also has trouble seeing clearly in the twilight or the dark. William sees less sharply and has trouble distinguishing colours. Retinitis pigmentosa is a disorder that makes the vision deteriorate. Over the years, William has begun to see less clearly. His vision has been stable for a few years. Nobody knows if this will stay that way.
William always went to a regular school. All these years he has received guidance from the Service for Integrated Education. At this moment William is in his second year of secondary education.
When William is 12 years old, his mother asks the Home Guidance Service for support. The mother wonders how things will go from now on.
4.1. We discuss the facts concerning William thematically, according to the characteristics explained above of children/adolescents and their families
Ø The children/adolescents gradually set themselves more and more free from the secure relationships within the family; they discover who they are and what they can do themselves.
For children/adolescents with a visual handicap: the awareness of being different increases
For William:
§ He is a sensitive and vulnerable boy.
§ He becomes more and more aware of his partial vision
§ His dependence on extra aiding tools emphasizes his being different. In this way he is strongly opposed to using a white cane because he is painfully aware of the strange glances of the people around him.
§ He feels really hurt and stupid when his peers make comments about his awkwardness or laugh at him when he once again stumbles over a school bag.
§ Visits to the ophthalmologist are time and again moments of great uncertainty and fear.
§ The others do not understand his visual impairment: things he manages to do without too many problems one time, he will do by touch the next time.
Ø They “attach” themselves to a larger social group
§ Concern about being embarrassed in front of the group
§ Having to rely on others
For William:
§ The experience of being the target of teasing and of negative reactions by other children is present at an early age. When he is 9 he changes school because he is badgered too much.
§ Entrusting himself to others happens hesitantly and distrustfully.
§ Having to make an appeal to others is not self-evident and needing other people is not a right but constitutes an insult to his autonomy and self-esteem.
§ The self-evident optimism in contacts is threatened by uncertainty and negative expectations.
§ “Being part of a group” is not self-evident.
§ Doing his homework takes up a lot of time and effort and his leisure time often goes down the drain. The little free time William has is spent in front of the television or the computer.
Ø From a feeling of confidence in themselves and of self-assurance, they develop several skills
For children/adolescents with a visual handicap:
§ uncertainty about their own abilities
§ getting fewer opportunities to function independently
§ communicating with others made more difficult
For William:
§ He dwells more and more on the things he can do less well than his classmates because of his visual impairment.
§ William’s mom won’t let him go out with his peers. She worries because he has difficulty moving about independently. He is no longer asked by his classmates. William does regret this, but he finds it difficult to admit.
§ The first reaction is often one of defence and fairly cheeky revolt. Socially skilful behaviour that keeps open communication is getting repressed.
Ø They evolve towards relations of friendship and towards a more intimate relationship, including sexuality
For children/adolescents with a visual handicap: a risk of becoming isolated because of:
§ difficulty in establishing relationships of friendship
§ limited communicative skills
For William:
§ He often puts up a defensive and distrustful front.
§ He persistently puts himself in the role of the one who needs care and attention (and gets too little), hardly ever or not at all in a giving role.
§ Being intensely preoccupied by his own feelings, there is little room for attention for the experience of other people.
A summary:
As a result of all this William:
§
is very tense
§
persistently revolts against his visual impairment
His struggle expresses itself in his anger about little things, his sharp
reaction towards peers who move things around without telling him so that he
can no longer find these things, in his sadness because he is not like the
others, in being very demanding towards his mother and his jealousy towards his
sister who seems to be the “model” child that never has any problems
§
very often reacts inappropriately,
because the other children aren’t always understanding and because he himself
doesn’t always understand exactly what is going on around him because he fails
to notice facial expressions and gestures.
§
is continuously on the defensive
towards his peers. The many conflicts seem a necessary evil because he feels
that he has to stand up for himself all the time.
§
is very dependent on how other people think about him
In looking for “approval” he develops a great dependence on his mother.
Ø From the secure relationship that has grown within the family, the parents can now give their child more opportunities for doing things independently
For families with a visually impaired child:
§ the evolution of the relationship between parents and child depends on the way in which the parents (starting from their own histories and personalities) deal wit the handicap. The tendency to fearfully protect or exert excessive control can be strengthened
§ balancing between protecting and letting go is a difficult task because the handicap entails a greater vulnerability and actual dependence.
William’s mother is very demanding towards herself, her children and the support system. She wants to tackle the problems and has learned to “fight” for her welfare and that of her family. This expresses itself in:
§
great anxiety
concerning William’s vulnerability. There is a strong feeling that William
won’t make it. Each time William comes home from school, she is waiting with a
heavy heart for what has been done to him this time. She desperately wants to
“guard” him.
§
revolt
against the lack of understanding about her son’s handicap. The mother feels
that other people do not appreciate his possibilities and limitations correctly
and don’t “care” for him well enough.
§
anger
towards his feelings of inferiority and shame concerning his visual impairment.
She wants to encourage him not to be “weak-kneed” and to stand up for himself.
§
frustration
because of the fact that things don’t seem to “work out” for William
§
an urge to lead William,
and to impress on him how he has to do things and how he has to behave
§
her own “struggle”
against all the lack of understanding that she herself experiences when she
wants to offer her son every opportunity.
In other words we clearly see how family factors play a role:
§
William’s feeling of being deserted by his father
§
The strength of a one-parent family
§
The way mistakes and “things not working out” are dealt
with
§
The openness in talking about feelings of failure and
uncertainty
§ The way in which “solutions” are looked for
These family factors strongly determine the way in which William deals with his visual handicap.
4.2. The home guidance
4.2.1. Objectives and method
Ø Supporting him in dealing with the idea that his vision may further deteriorate
Ø Supporting William in actually dealing with the consequences of his severe visual impairment
§ concerning his coping skills
we teach certain skills and practice them
§ concerning his social skills (learning to ask for and refuse help, reacting to remarks by other people …)
The peripatetic teacher organizes practice moments in class, by means of discussion we explore the different options for reacting and try them out, for example by means of role-play.
Ø Pursuing with William how he instinctively deals with the consequences of his severe visual impairment
By means of conversations we go deeper into the events of the preceding weeks, into what was experienced as good/more difficult; we chart his own reaction, his own contribution to the event.
Ø referring to regular services to accommodate the tension and sometimes intense stress that William builds up
Ø
We offer the mother a reflection on her own emotion,
her concern as well as her great exactingness that make her want to “control”
and direct, her questions and uncertainties … about her own “struggle”
Ø We offer the mother support in the search for a proper pedagogic approach, aimed at letting go and trusting William
4.2.2. Where are we now, after two years of guidance?
§ William manages a little better to recognize the adaptations he needs. He took his white cane with him for the first time on a class trip.
§ William remains combative: he doesn’t want any unnecessary concessions.
§ He consciously tries to ignore the negative reactions of other people and certainly not to let them anger him.
§ His sensitivity about how other people think about him is still very great. The recent experience that certain girls in his class showed him some extra attention does him good.
§ William remains particularly wary of other people and still is not easygoing in his dealings with them.
§ He remains an earnest boy who often reflects on “who am I?”
§ Towards his mother William is going to try to revolt against her persistent urge to “force him to do things the way she feels they should happen”. His struggle for a “space” of his own to learn to understand what he feels and wants is taking more shape.
The mother is pleased that – in certain areas – things are improving a little for her son. But the anxiety is still great and the “struggle” for William’s welfare still demands a persistent effort.
4.2.3. Which stumbling blocks do we experience?
Ø
In this case “supporting the emotional development”
also means looking for a space (literally as well) for (shared) experience. It
is difficult for the mother to allow William this moment for himself.
Ø The experience of being badgered is so deeply rooted that we think that individual psychotherapy may be indicated. It is very difficult to make this advice debatable and acceptable to the mother.
ABSTRACT
Three years ago the Home Guidance Service for children with a visual handicap was extended to children of primary-school age and adolescents.
This phase of the development is characterized by the gradual setting free from the secure relationship within the family.
Parents can give their children more opportunities to do things independently and to enter into more elaborate relationships with other people.
For children and adolescents with a visual handicap and their families this evolution is not always problem-free. Being visually impaired implies risks for the development of the feeling self-respect, for shaping one’s own identity and for the social competence. For parents the task of striking a balance between protecting and letting go is often more difficult.
Families with children or adolescents with visual limitations can call upon the Home Guidance Service to tackle with a counsellor the problems that parents and child experience.
Starting from a clearly formulated plan of action, the realisation of the different points of attention and objectives is systematically pursued. The methods can be very diverse and are geared towards the specific issues.
In the course of this talk we will clarify these aspects and methods by means of a case study.
|
Please send comments or questions to webmaster@icevi.org.