Abstract
This paper intends to present an overview of the stages that the parents of children with disabilities have gone through for parent empowerment base on their first-person accounts. The expectations of the Turkish parents from the society and how they have struggled to accomplish their goals for their children and themselves will be discussed on this presentation. Furthermore, parents' changing roles and impact of this on the societal attitudes toward disabilities will be analysed.
Introduction
With the birth of a child with disability, parents are faced with a new world of experiences and challenges to cope with. The different road that the parents need to follow starts with the diagnosis process. In many cases, the diagnosis happens to be an ambiguous, mistaken or inaccurate process that leads to life long impact for the families. Dale (1996) revealed how the professionals first communicate the news of the disability determines how the family will restructure the rest of their life with the child with the disability. This initial experience continues to arouse dissatisfaction and anger in parents (Carr, 1970). On the other hand, the appropriate leading, guidance and support of the professionals have facilitated the process of developing new constructs and created an effective support system for the families (Davis & Cunningham, 1985).
Another significant challenge of the parents for their children is to search for or get their children admitted to schools or educational settings and to secure the right kind of education. In countries, like Turkey, where the educational services and programs for the children with disabilities and their parents are limited and scarce, parents most often feel helplessness and powerlessness.
Moreover, the child with disability places extraordinary demands on every member of the family, and the family unit is significantly affected and shattered by this experience. Specifically, the siblings may experience the detrimental effects (Sourkes, 1987, Davis, 1993 ).
The extraordinary emotional stress that the parents go through have been explored by many investigators (Davis, 1993, Gill, 1997). The extra care that they have for their children and the intense investment of time and energy and financial burden that they experience create a feeling of ambivalence on those parents.
The literature reflects the experiences and perspectives of families from different backgrounds and cultures. Therefore, I decided to explore the Turkish parents' perspectives on having a child with disability and focus on the universality of some of the themes. The purpose of this study was to explore the scope of the problems and difficulties that the Turkish mothers are faced with and their reactions and expectations from the different segments and systems of the society.
Method
14 volunteer mothers who have been in a group counseling experience with the researcher participated in the study. 5 of the mothers were the mothers of children with Down Syndrome, 7 were the mothers of children with mental disabilities and 2 were the mothers of children with autism. For all mothers , this was the first group counseling experience. The age range of the children were between 5-14. Interviews were conducted with those mothers. Note taking and tape recording were used. Data collected were transcribed, content-analyzed and related opinions were grouped.
Results
Data collected through the interviews were transcribed, content-analyzed and similar opinions were grouped and presented according to the themes and issues revealed during the interviews.
The first theme: The initial responses with the break of the news of the disability and the initial encounters with the professionals
The participants were asked two questions to explore the initial responses of the parents and the interactions with the professionals. The mothers revealed that the initial shock experienced was accompanied by feelings of helplessness, the intense anxiety of unknown. One mother said" It took me six months to examine my child, to recognize the differences characterized by Down Syndrome, once I have internalized this, I started searching for books and materials to understand the scope of the problem I have encountered with". Another parent said " Whatever the difference is, that was my child, and I loved her". Depending on the support that they have received, specifically, from the spouses, the initial responses showed some variations. One mother expressed it very vividly" From the first moment on, my family, my husband and myself learned to confront and tackle with all the difficulties we face with and started to restructure our life".
The first encounters with the professionals play a significant role in the initial reactions of the families. As they move from being an expert to being a partner in the families' discovery and understanding, the process is facilitated (Davis, 1993). "To feel the support of the professionals, initially helped my own psychological well-being, then my son's development" was the expressions of one mother. However, the relationship of some families with the professionals was less positive and affected the further process of reorganization and adaptation negatively. In one mother's words" I was hurt with the way I was treated, I wish I could be informed about the disability and how we could cope….everything would start differently then…."
The literature across different cultures and countries on this theme shows some similarities. The shock and the grief was expressed by Featherstone (1980) as" I wept for the perfect baby I had lost, for the 4 year old who would never be able to play outside unsupervised". Gill (1997) expressed similar feelings with the Turkish mothers by saying" Our insides are torn by such shock, grief, fear, and sense of loss that it feels like death".
Anderson (1982) stated the response of a professional as" Your baby is Mongoloid". He will never be normal!. On your way to California, I suggest you drop him off in an institution and forget about him". On the other hand, Pringle (1983) described a doctor who cared for his son a lot and became like a member of a family.
The second theme: The developmental and educational needs of the child and a comparison of the past and the present
This question was asked to get information on how the mothers perceived and stated the needs of their children and the differences they had perceived in their children through the years. The feelings of helplessness and powerlessness were very explicit in the following words of a mother" I was aware of the differences in the developmental patterns of my child, but trying to avoid it, relating it to the small childhood accidents he kept having. When his peers got ahead of her, a great panic stroke us!" The mothers mentioned that as they were informed about the developmental needs of their children, and were able to get responses to their questions on where to get help and support in relation to educational provisions, they had a positive look to the future. They became more aware of the fact that they could not change the reality of having a child with disability, however, tried to create the best for their children. An American mother expressed the similar feelings by saying" We can not go back and change the past….Today, I will remember that the most useful thing I can do is to live this day the best I can" (Gill,1997). One Turkish mother compared the past and the present "In the beginning, all I could see was her difference , whatever her problems were and still are, now, I do not see her different than my other child, like other children ,she will grow up with her uniqueness and love and affection". A similar perspective was expressed by a mother from another culture" You have a child with disability…Life is different than what you have planned….but the days continue to carry their richness, and you can still experience the important things" (Gill, 1997).
A comparison of the past and present in relation to their own feelings and perceptions was also an important dimension in this theme. The reconstruction of their view of the child influenced their own constructions of themselves. Families experienced and judged their situation as an extraordinary and challenging experience. Many families felt that their lives were enriched and made more meaningful because of their child with disability. As one mother expressed" God gave this special child to me, because I am a special woman who can handle and work out the difficult".
The third theme: the services and the support received for their children and themselves
The educational provisions and support systems and their expectations from the governmental sector were reported as one of the major themes. The parents have contributed significantly and distinctly to the quality and the quantity of the services in Turkey and they still continue to do so. The associations and the foundations by the parents and the nongovernmental organizations initiated new programs like early intervention and have been striving hard to contribute to the change of attitudes in the society and the development of new services. However, for the siblings, as similar to the picture in many other parts of the world, not very many services were established. As a mother expressed" To meet and share with other families, helped my empowerment and supported my self esteem". One of the stressors for the families is the mainstreaming process. We are all aware of the fact that the quality and the quantity of the services in a country is directly proportional with the people's ideas and the attitudes in that society (Gargiulo, 1985). In our society, the majority does not concentrate on the strengths of those children with special needs but focus more on their weaknesses. Most people still go for labeling these individuals and concentrating on their differences rather than their similarities with the rest of the society. Therefore, the families strive hard to get the society know the similarities of their children with other children rather than the differences with them.
The fourth theme: The expectations for the future
The mothers expected to have better early intervention services for their children. They stated that once they have realized the disability, they started searching for services for their children. However, in many cases, they experienced problems due to labeling and biases toward disabilities. As a mother expressed" I wanted my child to be accepted to schools like any other children, not being focused on her weaknesses"……at every step of their development, we have to struggle…".As an American parent said" There are struggles outside the home….negotiating an independent plan with the county social services…". The Turkish parents expect to struggle less in the future. Parent empowerment has been initiated and parents have been very actively searching for means to develop services for themselves and for their children. However, still a very significant source of anxiety is the future of their children when they pass away. In Turkey, the services for the young adults with disabilities are scarce, therefore, the parents experience extraordinary emotional stress and anxiety on this issue. They expect the governmental and nongovernmental organizations to make arrangements and develop services in this respect. When they think of the future, they dream of a huge array of programs and services for themselves and for their children.
Discussion
The problems that are experienced by the families are unique to each family, but can be understood and evaluated in relation to their microsystem, mesosystem, ecosystem and macrosystem. The family relationship is the microsystem, mesosystem is composed of the extended family members, the neighbors and the professionals.The ecosystem and the macrosystem are the two systems related to the cultural, national, governmental and nongovernmental resources and the factors. To enable understanding of the adaptation processes, the families attribute meaning to the events and their life with the child with disability by constructing a new system which facilitates the process of anticipation for all the experiences (Davis, 1993). Therefore, the support network, the resources and the services for the children and themselves are some of the very significant dimensions for the restructuring of the families.
Although, parents come from very different circumstances, it seems that there are some common emotions and experiences among the parents with different backgrounds. One important commonality is that many parents suggested that they have become better people because of all the struggle and the changes they have gone through. In other words, as they develop their coping skills, they feel better about themselves leading to better self-esteem in parents. Another significant common theme is the similarities on the initial reactions and the relationship with the professionals. Parents from different circumstances show similarities in this respect, however, how they cope with the initial reactions depend on their support systems and services avaliable for their children and themselves. As the family -centered practices are developed more, the families are expected to cope better with the initial reactions. In other words, as the families are included in decision making, planning, assessment and service delivery, we expect the families develop new constructs sooner to anticipate the new realities they need to cope with. Moreover, when we are able to develop services for the whole family, not just the child and initiate the services by the families' priorities for goals and services, the families will develop more effective coping strategies and skills. As the parents get more empowered, they may decide on the level of participation.
Families across different cultures and backgrounds reveal similarities in those themes and seem to develop similar constructs depending on the societal reactions and their own experiences. The cultural factors are thought to be very significant, thus when a family, whatever the background is, when thrown into a state of disequilibrium in a stressful life event, seem to respond in a similar mode. I believe the further research should focus more on those commonalities across cultures .
Many Turkish parents still experience difficulties and face some negative experiences because of the societal attitudes that focus on labeling. Informing the society more on the characteristics and the needs of those children and the individuals will help the society focus on their similarities rather than the differences. Finally, our accomplishments for the future will be shaped by establishing social integration and preparation for the successful transfer from school to life and to actualize "Education and let the author add, Productivity, for All" at a universal level.
References
Akkök, F. (1997) The women of Thursday. Ankara: METU Press. Anderson, K. W. (1982). Don't forget me Mommy!. California: Marin. Carr, (1970). Mongolism:tellimg the parents. Developmental Medicine and Child Neurology, 12, 213-221.
Dale, N. (1996). Working with families of children with special needs. London: Routledge.
Davis, & Cunningham, (1985). Mental handicap in E. Button (ed.) Personal construct theory and mental health, London:Croom Helm
Davis, H. (1993). Counselling parents of children with chronic illness or disability. Leicester: British Psychological Society.
Featherstone, H. (1980) A difference in the family. New York: Basic books.
Gargiulo, R.M. (1985). Working with parents of exceptional children: A guide for professionals. Boston: Houghton Mifflin Co.
Gill, B. (1997). Changed by a child. Companion notes for parents of a child with a disability. New York: Doubleday.
Pringle,T. (1983). This is the child. New York: Knopf.
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