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Support network for families with visually impaired children – a parental perspective.
Focus: Early intervention
Topic: Families
Mrs Annica Winberg
Welfare assistant
Sweden Institute for Special Needs Education
Resource Centre Vision Stockholm
Box 1313
171 25 Solna
Sweden
+ 46 8 4 700 715
When, as a parent, you receive the information that your child may suffer from a severe visual impairment or is totally blind, of course this is an immediate trauma which is due to cause a great deal of stress in the family. The addition of a child with a severe handicap to the family is however not to be seen as an isolated event. It is the start of a more or less life-long continuous adjustment process. The parents have to adapt to a new set of circumstances for their future life. In many aspects they have to revalue the idea of their life-project and try to reconstruct a great deal of their values, plans and hopes for the future. Thus, it is in many ways a painful and relatively long process requiring both time and well adjusted support. Consequently the counselling process must also be viewed as a continuos process, aiming at helping the parents to find resources of support and developing efficient coping strategies.
Several recent studies show that many parents of a visually impaired child, after the first years, when life often is described in terms of chaos and despair, adjust well to the child’s diagnosis and to their new life-situation. Many families show good capability to cope effectively and positively with the additional demands experienced in raising a child with a visual disability, even though learning to cope takes both time and effort. Over the years many families also become very talented in using different response strategies and resources of support, both inside the family and among those offered by professionals.
When I have met with the families of pre-school children in my work as welfare assistant at the national resource centre for visually impaired children in Sweden, I have often felt that the end of the child’s pre-school age for many families can be a relatively calm period. The parents have often to some extent recovered after the first years of chaos and feel that their child is getting on fairly well. Something that worries most parents, though, is the school start of the child, both in finding appropriate educational programs and regarding other children’s attitudes towards the child. It is not hard to understand the concern of the parents, because it is clear that in many ways the visually impaired child has to face a more precarious situation, starting off in mainstream with new classmates and in surroundings that are often new to the child. Most parents worry a great deal about how the child is going to be treated by other children in school and that the child is going to be lonely with no one to play with. In Sweden almost all visually impaired children attend mainstream settings. Special schools are only attended by visually impaired children with additional disabilities.
In Sweden, apart from contact with medical professionals, opthamologists at the eye-clinic and the staff at the Child Health Care Clinic, these families have received support from a local special teacher, visiting the families in their homes and the child in pre-school, giving educational advice to parents and pre-school teachers concerning how they can help the child. Most families also have a permanent contact with professionals who can provide the child with optical devices and give advice concerning orientation and mobility. At the resource centre of Special needs education the families can attend educational groups for families having a visually impaired child, at three times during the pre-school period. When attending these groups the whole family usually stays in the resource centre for three or four days. Some families also visit the resource centre with their child for an opthamologist and psychological assessment of the child and to receive educational advice before school start. Most families also attend group meetings and receive support from parental groups of different kinds in their home area.
The aim of this study has been to focus at the parent’s own opinion of how they dealt with the crisis and how adequate the support from society has been in relation to their problems. Special focus in the study are following topics:
What happens in the family when a child with visual impairment is born, concerning the parents living conditions and how they deal with the crisis?
What is the parents own opinion of how adequate the support from society has been, in relation to their problems?
Has the received professional support, in the parents opinion, been sufficient to prepare the child for school-start in mainstream?
Methods:
Qualitative interviews with parents of nine visually impaired or blind pre-school children, were conducted the year before school start. The study comprised the parents of all children, born in the same year in Sweden, known to the resource centre of Special needs education, who were blind or suffered from a severe visual impairment and were supposed to start school in mainstream the following autumn. The whole group consisted of eleven children, but two families did not want to participate in the study. Two children were totally blind and seven children had a severe visual impairment. Four children had additional disabilities. All children were recommended to start reading Braille or to combine Braille and print.
The parents decided themselves if they wanted to be interviewed together or separately. In total seven mothers and seven fathers were interviewed.
Results:
All families described the first months or year as a traumatic phase, when they experienced shock, chaos and strong feelings of uncertainty about the future. This is in accordance with other similar studies. The provision of early counselling and support is probably of the utmost importance for the parent’s possibilities to adapt and to develop good coping strategies. Thus, the process has to be undertaken with joint appraisal and with parents in control of the timing. Some of the parents in the study remembered that they had been offered emotional support during the first weeks, when they often were still in the hospital with the child, which they had turned down. They say that at the time, they were afraid that they would break down if they started to talk of their own feelings. They felt that they had to be strong and needed to put their own feelings away, to be able to be a better support for the child. This was particularly obvious for the single parents. Looking back, some of the parents say that they had wished that that they would have been given the offer of emotional support at a later time and that they probably would have accepted the offer then. The parents reactions can be seen as a denial of what had happened and an avoidance of situations emphasising the problem, that may have been necessary coping strategies for them at the time. Thus, it is important to offer counselling and support to families in this situation more than once to maintain a better timing. The families who had received early counselling during the first year, which were a minority in the group, were all satisfied with the support they had received, and some said that they were not sure that they would have managed the way they did without it.
Many parents also expressed that the impairment of the child also caused great uncertainty for future life, both concerning the child and for the parents themselves. As parents we often have inner images of our children’s future lives, that reach many years ahead. When the child turns out to be ill or disabled in some way, it becomes hard for us to make that fit in with these images. Some parents said that during the first years they felt that the future to them was like covered in a smoke screen and that this situation itself scared them immensely. To be able to cope adequately with the present situation of life, it helps to know at least something about the future to come. Therefore, seeking information on the diagnosis and future expectations for the child, is an important part of the parents coping process. To withhold or delay information of diagnosis or handicap in order not to upset the attachment process between the child and the parents is probably not a good idea. Most parents said that they wanted all the information available, as soon as possible to be able to cope. They also need to discuss with doctors and other professionals possible alternative treatments for the child, both realistic and unrealistic ones.
Some parents also said that in the beginning one of the most important things to them was to be able to keep up a hope, that in the future it would be possible to find a treatment that would make their child able to see again. These parents explained that the hope for possible improvement had been necessary for them in the beginning, to be able to cope with the present situation and the additional demands that raising a visually impaired child put on them.
Do the parents feel that the support they have received has been adequate?
In Sweden the professional support to families who have a visually impaired child is carried out by several different authorities. Many families reported that they had a problem in understanding the support system and to identify sources of aid available to them and the child. My experience when meeting these families at the national resource centre, is that many parents express concern about the limited resources or lack of assistance. They also report lack of communication between different parts of the support system and that they sometimes feel that they have to take the role of co-ordinator of the support network themselves, to make sure that the child is going to get the best support and training possible. To many parents this was like entering a whole new world, meeting peoples and professionals with tasks and titles they may never have heard of before. They have to accept to in some aspects share their family life with a whole lot of new people. It is important to remember that most of these families are in the middle of a crisis, when they first get in contact with the professional support system. Life is in many aspects chaotic, and it is probably hard to understand and to classify information maintained under these circumstances. Maybe this is one reason, besides where there is lack of or inadequate information from professionals, why so many families report problems in understanding the support system and difficulties in maintaining information concerning sources of aid
To most parents it is a natural instinct to strive to create the best conditions possible for your child. With parents of an impaired child this feeling seems even stronger. Several parents in the study reported that they were so afraid that they were going to miss resources of support available for the child and that this is a continuos source of stress throughout the child’s growing up. A major problem, in Sweden and in many other countries, is that the support system is so complex. Many families say they would need some sort of guide to help them to access information and resources of support. The majority of the parents report that although they are quite satisfied with the support they have received from professionals, a great source of stress and frustration has been not to understand the system. To help parents to get access to needed information and find sources of support also has to be seen as a continuos task, since the needs of the families vary a lot and also changes over time. Parents will continue to seek reassurance that they are finding the best sources of aid for the child throughout the growing up of the child. Times of changes, like for exempla school start, will always cause concern and a more stressful situation in the family.
In this study there were two families where there were also disabled siblings and it became obvious that it is important to pay special attention to families in this situation. For them life naturally turns out to be even more complicated. The support network tends to contain a much larger amount of professionals and the problems of communication and co-ordination increases. The need for support and possibilities for the parents to get relief and time to recover is of the greatest importance, to enable them to save as much strength as possible, which they will need throughout the growing up of their children.
Another group that may need special attention are families belonging to an ethnical minority group, were there can be additional problems in the communication with the professional support network, like confusion of languages and cultural differences in the views of handicap and disability.
Did the parents feel that the received support for the child and themselves during the pre-school period had been well carried out and had it prepared the child for school start in an adequate way?
Most families said that they were quite satisfied with the support and the preparations made for the child’s schoolstart. One of the families though, was very dissatisfied with the way the professional support had been carried out. Life to them was still, in many ways like an emotional roller coaster and they expressed strong feelings of no one helping or understanding them. They also expressed a great concern about school start for their child. This family belonged to an ethnical minority group, had no close relatives in the country and also had another disabled child in the family.
Most parents though, said that they were more concerned about the social situation and how the child was going to be treated by other children in school, than that the child should have learning problems. The parents said that they could see for themselves, when the child had attended pre-school, that their visually impaired child had difficulties communication and playing with other children and that this was a great source off concern for them.
Conclusions:
It is important to offer counselling and emotional support to parents of disabled children repeatedly during the first years of the child’s life.
A constant source of worry in the family concerns not getting access to available resources of support for their child. To keep the parents informed in this area is important to reduce their stress.
Families belonging to an ethnical minority group and families where there are disabled siblings, need special attention concerning counselling and support.
ICEVI World Conference, The Netherlands, 27 July – 2 August 2002.
BIODATA FORM
Paper/Poster Title: Support network for families with visually impaired children – a parental perspective.
PS Reference number: 3855
Focus Area: Early Intervention
Topic: Families
NAME: Mrs Annica Winberg
I work as welfare assistant at the national resource centre for visually impaired children in Sweden. In my work I meet with families from all over Sweden, visiting the centre to attend parental educational courses or to have a visual and mental assessment of their child. I also teach pre-school-teachers and teachers in comprehensive school how to meet with families who are in a crisis and how to help a child with a visual impairment to join the group.
Previously I have been working with families with physically disabled or seriously ill children in a special school for disabled children and in a children’s hospital.
My special interest and the focus of my study is how to find ways and methods to provide families with visually impaired children a well adjusted support network and how to help parents to find resources of aid and develop efficient coping strategies.
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