Chapter 10: Parents

Contents

  1. The counselling team for children and youth with visual impairment and their families
    Lena Annerborn, Franck Gunnel, Airi Karlsson, Gunilla Roxby Cromvall, Sweden
  2. Together Everyone Achieves More.
    Tula Baxter, UK
  3. The output of parents' social work throughout twelve years of their work in Lublin region, their problems and success and plans for the nearest future
    Danuta Bober, Poland
  4. Working with Parents & Relatives
    Toril Loe, Norway
  5. The way of the family with the blind child in Moscow mega-polis
    Elena Nasibulova, Russia
  6. Support groups for parents of visually impaired children
    Vladimir Radoulov, Bulgaria
  7. The Scottish National Support Service for Visually Impaired Children
    John Ravenscroft and Marianna Buultjens, UK

poster
10.1

The counselling team for children and youth with visual impairment and their families

full text of poster 10.1

Lena Annerborn, Franck Gunnel, Airi Karlsson, Gunilla Roxby Cromvall, Sweden

Address:
counselling team for visually impaired children
and youngsters and their families
Katarinahuset, Box 17903, S-118 95 Stockholm, Sweden
Tel:+46 8 690 60 45

To become the parent of a child with a permanent disability puts most people in a situation where their previous experience and usual manner of behaving in certain circumstances can no longer guide them. We are talking about a personal crisis. Every individual reacts in his or her own specific way. The counselling team is a unique initiative in Sweden. It provides support and advice to parents of visually impaired children, among other things:


lecture
10.2

Together Everyone Achieves More. Parents, Voluntary and Statutory Agencies, Professionals and Funders - Working together as a TEAM to support VI children, their parents and families

full text of lecture 10.2

Tula Baxter, UK

Address:
25 Newlands Avenue Thames Ditton, KT7, OHD, UK
Fax:+44 181 224 0735
E-mail: tulaabaxter@hotmail.com

This paper addresses the importance of partnership with parents, through early years to special education and integration, in problem solving, mutual support and outreach work. The needs of multi-handicapped VI children will be covered and the value of parent support groups will be discussed - using LOOK London, a parent support organisation in the UK, as the model for a network of parent support groups.

It is impossible to replace the care and support which comes to the child as well as to parents from within the extended family, but LOOK London seeks to address this need for family support where the extended family is lacking or insufficient.

LOOK London developed a model of family support through local parent support groups in Greater London and for supporting individual families that do not have a local support group in their area. Using case studies, it will be demonstrated that families can be successfully supported through this model and that VI children can actually obtain their rights to education benefits and to social integration into their local community.

This model of family support is based on a multi-disciplinary approach - parents working together with professionals as a T.E.A.M. - because Together Everyone Achieves More.

Full text no available.


lecture
10.3

The output of parents' social work throughout twelve years of their work in Lublin region, their problems and success and plans for the nearest future

full text of lecture 10.3

Danuta Bober, Poland

Address:
The society of Parents and Friends of Children with a visual impairment "Closer to the World"
20-870 Lublin, ul. Zywiecka 4, 20-870, Poland
E-mail: bs@ika.lublin.pl (or: danuta1b@kki.net.pl)

"Closer to the World" - the Society of Parents and Friends of Children with a Visual Impairment was registered in March 1998. But the history of the parents taking things in their hands is much longer. We first started our activities twelve years ago, as a Parents' Group operating under the umbrella of the regional branch of the Polish Association of the Blind.
With the limitations of "central planning" affecting both the Association and the official programme for supporting families of children with a visual impairment, parents were left very much to themselves with most of their problems. Finding a kindergarten, placing a totally blind child in the local school for partially sighted children or getting a Braille copy of a maths course book were some of the daily battles parents had to fight.

Looking back, twelve years since the first meeting of the Parents' Group, the list of activities initiated and continued by parents seems surprisingly long:

sighted children are some of the major victories. More will inevitably follow.


lecture
10.4

Working with Parents & Relatives

full text of lecture 10.4

Toril Loe, Norway

Address:
Tambartun National Resource Centre
N -7224, Melhus, Norway
Fax:+47 72879310
E-mail: toril.loe@ks-tambartun.no

The pre-school advisers at Tambartun will do their counselling when visiting the homes, or when the parents are at the courses at Tambartun. Together with the parents, we will find the child's best opportunity to have a propitious development.
The consultants have a central role in early years, in informing parents about general development in the visually impaired or blind child, in giving technical and pedagogical advice, and in strengthening parents' confidence as capable caregivers to their child. By providing early support and guidance to families with a blind child it is possible to minimise the unwanted development often seen in blind children.
We have taken some aim from Marte meo Guiding Principles (With your own strength). By using video based instruction, parents can learn a lot about the child's competence and opportunities, and we are able to document how the care-persons' competence changes as they gain a better understanding of the blind child' behaviour.
Of central importance to early intervention are the diagnostic, interventional and evaluative skills of the professionals in their dealings with the child and the entire family, and to allow the best possible service to meet the individual needs of families with children at-risk.


lecture
10.5

The way of the family with the blind child in Moscow mega-polis

full text of lecture 10.5

Elena Nasibulova, Russia

Address:
Foundation of the Visually Impaired
Souznyi Prospekt 24-4, Moscow 111396, Russia
Tel:+7 095 301 2407
E-mail: nasibulova@mtu-net.ru

I would like to speak about the problem of social rehabilitation of blind children and their parents too. I have passed through these things in a huge city - in Moscow. I did it with my girl together. There are only hospitals, two of them in Moscow, that keep all information about all blind children. At first parents do spend forces for operations, medicines, vitamins, injections, traditional and non-traditional doctors. When the child is one year old and medicine opportunities are already spent, the parents stay face-to-face with their blind kid and his or her upbringing. Only then they begin to understand, that the future depends only on them.

In first months and years of my daughter's life I needed the help too. I needed the same help, that she did: social and spiritual one. I live in Moscow, in one of the biggest cities in Europe, and I would like to tell you how did I seek the help and what problems did I meet. I will speak about it in details, but the result of my way is the idea of a special new service for the parents.

It should be a special information centre. It should keep all information about blind children of a city. And from the other side, the information about this centre must be in all hospitals, informational books and newspapers, at phone information services and everywhere. Only then the work will be effective and people, who have a blind child could find the help easily and in time. This centre should have enough different literature on all problems, which parents do have. And of course it should have enough staff for consultations, lectures and seminars for the parents.


lecture
10.6

Support groups for parents of visually impaired children

full text of lecture 10.6

Vladimir Radoulov, Bulgaria

Address:
Sofia University, dept. of special education
Shipchensky Prohod str. 69A, Sofia 1574, Bulgaria
Fax:+359 2 72 2321
E-mail: radoulov@fnpp.uni-sofia.bg

The support group is one of the modern models for group work with parents of visually impaired children. The short review of the special literature showed that the interest towards this model was rapidly increasing since the early 70-s. This paper describes a real practical work with parents of visually impaired children included in a parent support group in the resource centre of Department of Special Education in Sofia University. The following requirements for designing the group were taken into consideration: heterogeneity of the group; acceptance of specific rules for functioning; taking a decision about the topic by the parents. The dynamic of the group was defined by a popular four stages model: inclusion; work; action; conclusion. Special attention was paid to the group's leader. His skills had to be in three main categories: reacting skills; interaction skills and action skills.
The results showed that the parents improved their knowledge about the child and the specific needs in his/her environment. They mastered new approaches and strategies for managing different situations. Their self-esteem as well as their solidarity increased significantly.


lecture
10.7

The Scottish National Support Service for Visually Impaired Children

full text of lecture 10.7

John Ravenscroft and Marianna Buultjens, UK

Address:
University of Edinburgh
SSC, Holyrood road, Edinburgh EH8 8AQ, UK
Fax:+44 131 651 6502
E-mail: John.Ravenscroft@ed.ac.uk

The causes and distribution of childhood visual impairment (VI) in Scotland, are generally unknown. Although there exists an adult registration system it is presently unsuited to the needs of parents and their children. A significant component in the design of the new Scottish National Support Service is to provide and maintain a centrally held register which will, in part, determine and monitor the causes of childhood Vi throughout Scotland, thus allowing the epidemiological study of Vi distribution. By using detailed assessments of children's visual function we will be able to keep parents informed of the nature and quality of their child's vision. Educational strategies and resources can be tailored to suit each child's needs. Notification of a child into the service is accompanied by automatic entry into "Vis-Kids", a children's club where each child will get information concerning their specific visual impairment, toy catalogues and other items geared specifically to children (0-15 years old) . By setting up a voluntary register of both disability and service provision, we will help to ensure that ALL visually impaired children in Scotland receive optimum access to services.


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