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Stories play a powerful part
in a person's life. They paint pictures that give insight, understanding
and help to make sense out of what may seem chaotic experiences. Stories
challenge the listener to learn new things and to reflect upon his or her
understanding of life. To listen is to recognise the value of another,
bringing with it acceptance, respect and affirmation.
(Hand, 1995, p.1)
Introduction
The study, Stories to Tell, on which this paper is based, explored the experiences of ten families of children with vision impairment through the recounting and analysis of the stories they shared both individually and collectively. It gave emphasis to interactions within families and in relation to wider social, cultural and political contexts, highlighting the impact of medical, educational and social services and their policies on families. The stories families told provide unique personal accounts of the meanings they received, negotiated and conveyed in relation to their lives.
Background
Current trends in education in New Zealand espouse such notions as 'Parents as First Educators' (Boyd & Dixon, 1994), the education and support of the child through an holistic approach, emphasis of equality within the parent-professional partnership, and the ideology of a parent-driven education system as frameworked in 'Tomorrow's Schools' (NZ Dept. of Education, 1988). In tension with these trends are the rationalisation of the nation's education, health and welfare services, the move towards genericism, a 'traditional' view of education (currently reflected in the education versus disability support debate underpinning present policy change), and discussion surrounding 'hands-on' services as opposed to 'support services'. While some families negotiate such complexities in order to meet the needs of their child and family, others find themselves isolated and powerless. Whatever the involvement there are not only financial costs, but also loss of potential, loss of self esteem for the individual and the family; loss of status; loss of independence and mobility; loss of literacy; loss of identity; loss of vocation; and when the stress level gets too high, loss of family. The costs therefore can be enormous (Kerr, 1994).
Story telling
One way to gain experience
is to share that of other people. Stories are powerful ways of learning
which convey knowledge within the complexity of life itself, expanding
understanding of others and developing a sense of community within them.
Thus learning how some families approach, for example, their dealings with
different professional groups, their personal feelings regarding their
child, their role as advocate or their negotiation across
transition points may assist
others in similar situations further to develop coping strategies and approaches.
Ferguson, Ferguson and Taylor (1992), believed that telling stories in the study of disability was valuable because stories show how people experience their social world. They noted that while disability is increasingly acknowledged as a social issue requiring changes, there is still a lack of direct, personal accounts by people who are disabled and their families as a legitimate source of information for policy analysis and service reform. It was their contention that personal narratives constitute a large and neglected source of data for understanding how society and schools could better support children and their families. Such narratives could reveal the personal perspectives in words chosen by the authors, rather than being converted to predetermined categories by researchers.
Seligman and Darling (1989), suggested that professionals who exist to help families achieve their goals must understand, as far as possible, the families' definitions of what their members want and need, and must take a social system perspective. While researchers and policy-makers may think they know how a system operates they may be unaware of the attitudes, power relationships and day-to-day activities that govern people's lives.
Sonntag (1991) wrote from her experience as both a parent and researcher in New Zealand that the women she knew with first-hand experience of disability never experienced feeling powerful in relation to policy decisions. Foucault (1980) focused on how "systems of ideas emerge as systems of power" (p.97) and stressed the need to understand the ideas of those who were disempowered and whose views were rarely heard or used in policy. Ignoring their voices was not because they had nothing of value to say, but rather because more powerful people, including researchers, dominated and controlled ideas, discussion, and the interpretation of reality.
Carhill (1991), together with researchers and writers from the disability movement in New Zealand, urged that the voice of those with disabilities, their families, whanau and caregivers be attended to. This position is supported by Ferguson and his colleagues who described disability as a "social construct of multiple experiences waiting to be recognised" (Ferguson, Ferguson & Taylor, 1992, p.296). What people experience as real is determined by such things as culture, values, beliefs and gender. From this perspective, research as stories can uncover the many experiences of disability and forms part of the rationale for this study.
Purpose and Aims
The study was designed around a narrative, life history research model which focused on the lived experiences of ten families. Collaboratively undertaken, the purpose of the research was to make visible the lives of families of children with vision impairment. There were six specific aims of the study:
1. To reveal the hidden face of disability through the lives of families of children with vision impairment.
2. To explore people's lived experiences of disability in relation to such issues as attitudes, values, minority status, empowerment, disempowerment, and historical, cultural and social circumstances.
3. To identify some of families' coping strategies and the ways in which they have negotiated developmental tasks, information systems, service systems and support networks.
4. To identify the impact of education, health and welfare systems and policies on the experiences of families and to seek positive directions for the future.
5. To present the experiences of these families to others so that their stories might be useful to those with disabilities, their families and whanau in making a positive difference to the overall quality of their own lives.
6. To provide others: advocacy groups, professionals, service providers, policy makers, with the ideas, experiences and emotions of participant families as a basis for critical analysis and action for change (Lather, 1986a).
Methodology
Qualitative methods offered
techniques whereby ideas, feelings and beliefs individual to each family
could be expressed within a climate of power sharing and reflection. Participants
themselves determined the focus and parameters of the study. The collaborative
approach adopted required that participants were involved in every aspect
from the identification of the study's aims and research questions, to
determining what information was presented and how it would be utilised.
Stories were accessed through the triangulation of focus group exploration,
data sheet information and face-to-face family interviews. Each story was
treated as a unique, personal account, using participants own words as
the authoritative statements on their experiences.
Participants in the study were the members of the national committee of the Parents of the Vision Impaired Organisation (PVI). This organisation was established in 1986 to advance the educational, health and welfare needs of their children and young persons with vision impairment, by providing an effective parent-based support and advocacy group with an active and informed parent constituency. The philosophy of PVI is based on the belief that children who are vision impaired have the right to an equal opportunity education, access to required services, and community acceptance (Revised Constitution of PVI, 1994).
Researcher's perspective
Personal experiences and perspectives are important elements which a researcher brings to qualitative analysis. The relationship between researcher and participants is important in any kind of research, but particularly so in a narrative investigation. Like Oakley (1981) and Stanley and Wise (1983) the concept of neutral objectivity was rejected in favour of recognising that experiences and knowledge are brought, either implicitly or explicitly to the study. It is therefore acknowledged that my background, experience and personality have affected each stage of this research process, from the selection of the participants through to the writing up of the analysed data. The study therefore has emphasised the inclusion of personal experience and acknowledged the subjectivity of both participants and researcher.
A Pakeha working woman, married, with four sons, teenage and young adult, I brought historical and cultural experiences that differed from those of some of the participants. This required that I examine my own values and assumptions. My subjective involvement in this research was multi-positional - as child, parent, professional and academic. My interest in families of children with disabilities relates to experiences as a child with a physical disability. The physical impact of my condition is today rarely apparent and it is largely the psychosocial impacts which remain. However, certain events in childhood drew me to this study. For example, an incident over forty years ago had a significant effect on my view of the parent/professional partnership. Briefly:
My middle sister and I had been members of the Crippled Children's Society since our birth. From time to time the social worker of this organisation visited our home. To my child's eyes she appeared austere and 'stiff' - not at all like the other women in my life. Perhaps this was also the perception of my mother, a gentle, unassertive person. On one particular day, my mother caught sight of the social worker approaching. Quickly scooping up the youngest, she ushered her three daughters to the bedroom where we crouched under the bed, remaining there until the knocking on the door had ceased and the footsteps faded away. The safety of our family was restored!
Such personal experiences have contributed to the depth and understanding that I brought to the research process.
The stories
The stories of each family are told with the voices of all participants heard directly. Nine families chose to use their own names and one family requested that they be given other names. Each story is a reflection of the perspectives of the family at the particular point in time that the study was conducted. The stories aimed to build understanding of the lives of families as experienced in their homes and communities.
Findings
Findings were examined within
the framework of Bronfenbrenner's (1979) Ecological Model adapted by Hornby
(1994) for use with families of children with disabilities. They were discussed
in relation to their location within the four systems of this model: microsystem
(immediate family - child, mother, father, siblings); mesosystem (extended
family, peers, neighbours, friends, work colleagues); exosystem (education,
health, welfare systems, voluntary agencies); and macrosystem (ethnic,
cultural, religious, economic, political, legal systems), with a final
section examining the issues and coping strategies that were utilised across
all system bands.
Issues relating to the educational and health needs of children predominated with educators the professionals parents most expected to support them. Parents sought parent-professional relationships which reflected equality, based on parent as well as professional expertise. Coping strategies used to negotiate both developmental tasks and social systems were identified, with the significance of alliances with other parents of children with disabilities highlighted. Advocacy was deemed to be a central process in bringing about change to social systems which were perceived as largely unchallenged by the great majority of parents.
Implications of the study were detailed in relation to families, professionals and service providers, policy development and future research. They underlined the importance of a society valuing diversity, and empowerment of people disadvantaged by prevailing attitudes, policies, structures and practices, providing a firm basis for actions that could enhance the lives of all families of children with disabilities.
The inherent value of this study lies in the uniqueness of each story and in the reader's ability to integrate meaningfully what is relevant to their own life experience. Families were all willing to talk openly about themselves, if it would help other families to interpret and analyse their world, and to develop plans for action from new understandings. Because the aim was to highlight the complexity of the experiences which families of children with disabilities face in an inequitable society, some parts of the study inevitably were somewhat critical of professional practices and policies. Captured in the stories they told, their various responses depicted how professionals and their advice might be perceived by families adjusting to life with a child with a disability, and offer, those of us who are professionals, the opportunity to listen and understand this different perspective.
Conclusion
The study goes further than
the particular stories of these ten families, being an illustration of
the daily experiences of many families of children with disabilities in
New Zealand. It presents positions which recognise interests and complexity
in everyday life and speaks to families, professionals, service providers
and policy makers, who may all find a glimpse of the familiar in the accounts.
The study may assist in the establishment of policy and the provision of
support which may be more fully informed. The stories are also about how
already existing attitudes and social patterns of privilege are maintained
by society, and about how systems and policies, which have been designed
to assist, benefit some but not others. They aim to raise awareness and
expedite change. As Lather (1986b) proposed, research should contribute
to a more just society.
Violet's Story
Tena Koutou, Tena Koutou,
Tena Koutou Katoa.
Greetings to you, Greetings
to you, Greeting to us all.
My name is Violet Parahi. I am a mother of four children. My youngest child, Shaun, is the reason that I am here today. Shaun is 17 years old, is totally blind and has other disabilities. I became a participant in this research study because it gave me the opportunity to express my story and to share the joys, the frustration, the anger, the misunderstandings, the assumptions and the abuse of not being heard. As a Maori parent, I wanted to share my experiences and the value of story telling with other Maori parents. By sharing stories and speaking out, we not only empower ourselves but each other, and create opportunities for effective change.
Shaun was born in the 28th week of gestation. He weighed 800 grams and was only 14 inches long. Doctors did not give me much hope for his survival. When I first viewed my baby several hours after his birth he was wired from head to toe. Nothing prepared me for what I saw. Anger engulfed me at the thought of him being in pain due to the life support systems needed to sustain him. He lived that way for 4 months, and during that time received two blood transfusions, suffered a stroke, caught an infection in his lungs and due to the high oxygen level in the incubator, his retinas detached causing blindness. I felt extremely powerless at not being informed of what was going on, being excluded from decisions, and there was also my unrealistic belief that professionals know it all (I now know better).
My encounter with medical professionals at this time was extremely frustrating. We didn't feel the information from the doctors was adequate. I think they tried to explain and for the time that Shaun was in the incubator the eye specialist was coming in and he was explaining what was happening - how the retina sometimes detaches because of the rapid growth of the blood cells and that it can cause visual impairment. He didn't say a lot. He just said that he hoped there wouldn't be too much damage, but they were not sure yet. After six weeks I went back and that was when he found that Shaun's retinas had detached. And he just said to me, "Shaun is totally blind." The paediatricians also said that Shaun may have some other complications because of the oxygen. They didn't know whether he would sustain much brain damage and they didn't say that epilepsy could be part of that as well. So the first thing to accept and digest was that Shaun was totally blind and then when I later went to visit the paediatricians they said there may be some brain damage but they didn't know what. All that I could think of was the first thing that I was told, and that was "totally blind."
The epilepsy started later. And it was like, something else to cope with. A lot of the things didn't sink in because the focus was on the blindness, because the blindness affects everything. So we worked with that. Then there was the hemiplegia. I didn't know Shaun even had hemiplegia until the RNZFB Early Childhood Social Worker told me because it was in the report. For the two years that I was visiting the Child Development Unit, nobody had ever said to me, "Your son has a weak right side." When I found out about the cerebral palsy I felt guilty because we had pushed him thinking walking was well within his capabilities and we were trying to work out why he couldn't balance properly. I remember feeling really angry. The paediatrician had assumed we understood the full implications of this impairment.
I think the hardest thing for me to accept was that Shaun was intellectually handicapped. I could accept that he was totally blind and there's always that argument that he could be an individual in his own right and independent. But I think I am only really starting to come to terms with just how difficult it is for him and how frustrating it's been all those years, for myself, and for him, because of having to accept the fact that he is intellectually handicapped and what that entails and the implications of that for him. Part of this was to do with my own image of intellectually handicapped children. I hadn't realised the breadth of degree in this disability. Some of the areas that we wanted to help Shaun in we couldn't because we were ignorant of the intellectual impairment. Perhaps if we had looked at the whole picture, but as a parent I only focused on several things. I couldn't focus on the whole thing until later. Now he's a teenager it's going to be difficult to try and do some things because he's developed behaviour problems which are part of the disability. As one can see my story so far, would be a path of rocky roads, slippery paths, mountain climbing and maybe a few green pastures.
When I think back, we didn't know what sort of questions to ask and a lot of the times that the appointments with doctors were arranged they were during my husband's working hours. We weren't assertive enough to know that he could have got some hours off work to go, or asked for a different time. Nobody had informed us that we had certain rights. I found out several years later from an Early Childhood Worker, that my husband and I could have had access to Shaun's file from the beginning. From what I hear from other parents they felt the same. Some professionals don't like to share their knowledge. Even recently when we tried to get more information about some of Shaun's medical conditions it was really difficult to get any answers. We came away from the appointment with nothing further and having been made to feel that we were trying to lay blame rather than wanting some clear facts.
It was really hard for us as parents because at the beginning there wasn't any social worker to come and help and we didn't have anyone to talk to about what was happening. Our lives became very hectic and the day to day demands of living and taking care of the family seemed to become more difficult to manage. I'd say for the first four years of Shaun's life when I look back now, I don't know how we coped. The older children were becoming teenagers with all their demands and I felt like I had gone into overdrive. However, friends were of great value especially in providing rides to and from the hospital as I hadn't learnt to drive then. They also helped in taking care of things like paying the accounts and making sure there was food in the house as we didn't have the time or the energy to think clearly.
Initially we didn't have much family support at all because my parents lived in another area and my husband's parents were working full time. I remember a comment once by a Pakeha parent saying she envied us Maori people because we have extended families and I said, for myself, it was non-existent. My mother never came to see Shaun until he was three years old. I remember talking to her and saying that I was really hurt that she didn't come and support me particularly in the months that Shaun was in hospital. My mother said that she didn't know what to do and didn't know whether she could cope with someone that had a disability. She didn't know how to be. Years later when we were talking about our beliefs she told how she actually believed that it was a curse of sorts from way back in the family. I hadn't realised that she still believed that and that's why she hadn't come to help. She's dead now, but it was interesting to hear that at that time. She felt responsible. So even though I was hurt that my mother hadn't supported me and my family, I felt aroha for her because she was honest about how she felt. Before she died she spent some time with Shaun and I will always remember him having fun with her. It was wonderful to see.
Shaun's birth impacted on all the family. I remember feeling quite sad because the relationship between my husband and I was suffering, but he was hanging in there. I felt sorry because there was no support for him. There was always a lot of support for myself because I went out and looked for it anyway. While there weren't really many services for the preschoolers back then, the CCS were really good and there was the RNZFB preschool adviser and social worker who were really supportive. There was also support from the Playgroup and other mothers that you could talk to. I asked some of the other wives, what happens for the men? Because my husband didn't like to talk, he just got on with things. So a lot of the emotional things we didn't actually talk about, we just dealt with what was on the surface. The deeper stuff, like the guilt and shame we didn't address until about 10 years later, when I had learnt about communication and started to talk to him about it. Being young parents too, we still hadn't mastered the art of communication. A lot of the time I took the decision-making role. It just became automatic because I guess I felt my husband wasn't coping - it just became another role to take. I didn't realise how much responsibility I felt I had to carry to keep me functioning. Today there is a change in the family situation in that I'm separated. My GP and others commented that they were not surprised - I felt I'd missed something. I actually thought my husband had coped the best he knew how with the limited support he had emotionally. We both needed it but instead of trying to come together we went our separate ways which is quite sad. I think now that hospitals or health services provide families with social workers and that's been a big improvement. I remember meeting one of them and I said, "Where were you so many years ago when we really needed you?" I feel young parents today are luckier in the sense that there is more help and there's more information, although when I approach some parents and ask how they are feeling some of them go blank because they haven't really touched it or come to terms with it.
I also felt for our children. It was a hard time for them too. It wasn't until they got older and I had gone and found out for myself about communication skills and become involved in community work and counselling for Parentline, that I learnt to use those skills with the children. But that was quite a few years down the track. I remember going to a seminar at the Sensory Resource Centre about siblings. I read a list of things that come up for brothers and sisters and I thought, we've never sat down and discussed a lot of the things with the children. We've just gone on and it's not until now the children are adults and learnt to be a little bit more assertive that we really talk. I often thought about conferences or workshops for brothers and sisters and wished that I had actually been able to send my own children to them, to give them an opportunity to talk about how they felt about having a brother like Shaun. I've only learnt about it as I've gotten older. The children talk about their own guilts now. It was hard giving the attention. With our older son, when he was at High School there was a stage when we didn't realise how much school he was missing. One day we got a ring from the school saying, "Mrs P..... and Mr P..... did you realise that your son hasn't been to school for 6 months?" and you sort of realise, gosh, you haven't been communicating with these children - or somewhere along the line it all breaks down. And somehow it seemed too late to get family counselling at that time. So one just battled on the best way one knew how.
In hindsight, I believe a major thing for me was not having any other Maori parents around with a child who was disabled. One day when the social worker came to visit he brought a visually impaired gentleman with him. I thought that was really wonderful but I still couldn't relate to him. I knew what he was saying - that many things can be accomplished - and you have a hope that your child is going to achieve things like that, even with a disability - but it was only years later I realised what it was that I felt was missing that day. If the social worker had brought me someone that was Maori it would have been different. Relating would have been different.
Today when I talk to Maori parents and ask them how it is, I'm not really asking how is it with the services, I'm asking how it is for them as Maori parents and a lot of them don't really relate to that because they think we're all parents. I remember the day that it actually went click. I was at a conference where I had to get up and speak to the teachers and that's when it actually came out. I remember saying to my sisters, "I'm going to talk about being Maori." I notice that when some of the parents sometimes start to talk about different issues that may come up for us as Maoris, they have to really think about it. I know as parents many of us had to face the same things but there always seemed to be subtle things. For example, I know in dealing with the paediatricians they seemed to treat us differently. With one of them I always just felt that when he went to explain things he didn't think that we would really understand. And I don't think it had to do with just being the parent. I always felt that there was the underlying thing of being Maori. He would always say "Do you think you would understand?" And my husband and I would look at each other and ask what he meant. One day when we had come out of the office after this had happened again, my husband asked if I thought it had anything to do with us being Maori. I thought so. We didn't want to think that was maybe the reason, but it seemed to be. And the other thing was the assumption that because we were Maori, we would be very compassionate and loving.
The few years I have worked in the Special Education Service have given me an insight into how parents learn to cope with things and come to terms with some of the issues. Also being a service provider gave me insight into professionals and teachers and how difficult the task is for them as well. They want to do the right thing but they are trying to find how they do that too. So I got to appreciate the both sides. I also encountered the difficulties for teachers without the resources and the help that they need as well. There are some wonderful teachers out there.
I believe part of the motivation for becoming involved in SES, in addition to the fact of truly believing in the value of early intervention, was that I needed to find answers and that was the place to start for me. It was really interesting how easy it was to accept once I got the information and was able to digest it. I was able to talk to someone because I had a colleague who was a psychologist and there were questions that they would answer without having to feel that they had to develop an answer for me. So I got a normal, factual and straight-out answer, rather than one that they felt that they had to colour because you were a parent and you didn't understand.
In my work I sometimes shared some of my own experiences. It gave me access in. There were a lot of times I think I was the only person that parents could talk to, they didn't have anyone else and the counselling skills I learnt came in handy. But I think for Maori families you need to be a little bit more real in approach. It's like the old saying, "Do unto others as you would do unto yourself." I guess that's what I practise, what I try to do.
I also became involved with PVI because I was looking for answers to do with Shaun. I was looking a lot for myself personally too, although I wouldn't have recognised that then. When I first became involved I had no idea what it entailed and I really did not sit back and think why was I doing it. It just sounded like a good idea and I wanted to be given the opportunity. Looking back one of the things I did want to see was more Maori parents because as a Maori parent myself I felt isolated. Even if it just meant sitting on the committee and being a face there - it meant being there. A lot of times that's virtually all I feel I've done. Raising awareness. It's been really good to see more Maori parents coming through now and I hope it may have made something happen. Initially whatever meetings I went to I never saw any Maori parents but I knew there were some with children and I actually got to see them when I came to Homai. So I guess I felt because we were isolated as Maori parents I wanted to meet other parents. When Shaun went to the Special School I got to meet other parents there that have older children and listening to them talking they say they wished they'd had some of the knowledge available now. As Maori parents we were really not encouraged to ask. When I look back I don't think anyone said, except the early childhood social worker and those at Homai, that you had the right to ask. And for me, if I'd had another Maori parent that came up and said, "Look as a Maori parent you have a right to ask," that would have made a big difference to me. We always felt we had suffered by the schooling system ourselves. So of course we didn't trust it anyway. So it's good for parents to have a support group that is willing to go into battle so long as we don't lose focus on keeping in touch as parents. We need also to be keeping the networks going with other parent groups like IHC because we are all aiming for the same things.
In thinking about support
and services to Maori I like the opportunity that we now have with Ngati
Kapo, the self advocacy group. However I believe that regardless of who
we are we still need to have the skills to do the job. We all come with
different skills and I think for some of our whanau workers there still
have to be the skills like communication and listening. The approach to
working with parents is different to working with disabled people and needs
to be learnt. I like the idea that parents have a consumer choice now,
whether they have a Maori or a Pakeha whanau/social worker. The social
workers that I have come in contact with have been very good but there
were times that if I'd known there was a Maori worker I'd have gone to
them for certain things. I see that as a good thing to have access to both.
But I think so long as the workers themselves have good communication skills
too many things shouldn't go wrong. And if people don't know the answers,
they need to say they don't know.
We need more orientation
and mobility teachers and counsellors. Maoris tend to shy away from counsellors
and therapists. I always advocated that they use them. Definitely we need
to have social workers or support persons. Parents need help in finding
out about benefits and other things. Often the GP will give them the information
but then they are not sure how to go about accessing things, so for the
majority of parents that I have spoken to, I've advised them to use a social
worker whenever they need them. It is their job to support, so use them.
I actually find now that as disabled children get older support is very small. If you've got teenagers that have got problems it's even more difficult to get help. I found that I had to go out into the community to seek help for Shaun. I've had help finding it from the workers from IHC, RNZFB and CCS. We all got together and we sat down and looked at ways that we could find people in the community to help. We were successful in finding extra funding and also trying to find families to provide support. However, Shaun is now very intolerant of other children and when a baby cries he is still very intolerant of that noise. He lashes out and once families got to hear that, it was very difficult and he got taken off the list. So for children that have challenging behaviours it is very difficult in the teenage years.
Shaun's not the only one. There are quite a few of his age group in the community that have different disabilities and the only thing to give the parents a break is sending them to a psychopaedic hospital. That was open to Shaun as well and I thought, six weeks away there and then he would come back and I'd have to start all over again. It defeats the purpose. So we looked for several people and it's still ongoing. I find that quite frustrating. It was good that the three services came together but I still ended up having to find my own help because the list just dwindled down. The difficulty continues.
It would be good if we had a person working with that age group because trying to find friends for Shaun is really hard - it would be lovely if you could go out and buy some. Unless I, or the school, take him out into the community he's really not involved in any extra activities at the moment. That is still up to me to do. I'm finding it quite hard now and I don't think it's going to get easier. As the children become adults I think care becomes quite a big issue. IHC are now assisting in this area and there are more opportunities for workers to be trained and upskilled. In our area there just haven't been the workers there and those that were skilled have been leaving because they were not being supported themselves.
I believe that service providers need to be looking at the teenage group and how they will support families, particularly ones that have challenging behaviours. There's not enough skilled workers around for that age group for them to be doing things. There are lots of things that I think Shaun should be doing, and could be doing, given the right atmosphere and people. I've watched at home. One of the things I did when I was working full time was to get a swimming pool so that we could become the focus point in our little street. I've watched Shaun over the years and he could go out and swim whenever he wanted to do something for himself. As he's gotten older the younger children in the neighbourhood still come for swims and he won't go out when they're there. When the older kids come he goes out, which suggests to me, he knows, he's aware. He goes out there and he sits and listens to them. They are still a bit wary of him so they just play around him. But he still wants to be part of that group. He doesn't want to be part of a younger group. That's been quite a learning thing having my swimming pool. It's an awkward age anyway for all teenagers and it saddens me to think that there are children his age that can't have their own peers around them. I guess I find that it's difficult between the ages of fourteen or fifteen, up to about eighteen to twenty, and if they have multiple disabilities, what is there out in the community for them? You need the community more then. You need to ask for more help for teenagers and it's more difficult to get. So I think that this age group becomes isolated.
My vision for Shaun is that we continue to work towards independence. I finished work because I wanted to give him some time, and myself time, to help him become a little bit more independent, even though he may never be totally independent. Some things we may be able to help him with. The fact that we have to medicate him to keep him calm distresses me but it's actually helped us to be able to work with him. He's a little bit more acceptable of things and easier to approach now whereas before he always didn't want to do it. He still has his moments but I hope that one day he will be able to leave home and maybe go into a community home and live with other people. For Shaun to be able to go into his community and be safe would be my vision for my son.
I think having survival techniques, a survival code helped me to cope as did a background where you just got on with things. At first I did not see the need for assistance. And I guess if you already have no self esteem, to actually ask for help is harder because then you feel you've failed even more. And to come to terms with all those things. That's what's helped me over the years, just going to counselling and actually accepting the fact that I need help. In turn, because I got to learn to talk about my own feelings, I was able to go back to my family and help them. That took me a few years and I don't have a problem with it now. That's really how I coped. I believe that all people who have some sort of crises in their lives need to be encouraged to have counselling and that families should be given the opportunity to talk about things. And I guess a lot of parents, regardless of how minor the disability might be, don't realise that still can be a crisis.
I think parent support groups also help but there are a lot of issues that I found as a parent I needed the opportunity to be able to talk about - your guilt, your shame, the whole bit - without having to continue to carry it, to be able to say, yes, I felt guilty, and angry and the rest of it. There is a need for someone who can find the thing that you are really asking for within the conversation, someone with the right listening skills. I think a person that has a good listening ear is going to achieve more than any other person.
I guess one of the things
people say to you when you first become a parent of a disabled child is
that you must be blessed. And I remember thinking way back then, oh yuck,
I certainly don't feel blessed in any way. But I have to say that when
I reflect back, I think that yes, in many ways I am blessed. I am blessed
in a sense that I have learnt a lot about myself, and accepted who I am
a little bit more with all the faults and whatever, and that has helped
me accept who they are as well. I guess that's what they mean when they
say you're blessed. But it's been a hard road. Not that it's going to end
just yet though. So for most of the people that I've seen, they've all
grown - and that in itself is something. I guess if we don't grow and learn
by our mistakes then that's when it's a tragedy. If that's what happens,
and there are some families that I've despaired for when I've come in contact
with them because you can see that it's seen as tragedy and they have felt
that they're not going to cope, it's sad. And there are some parents I've
met who were advised to give up their children and as they've got older
they've been able to look back and see that maybe they would have coped.
One of the things I really found frustrating as an early parent was the
impression that people kept thinking that you weren't going to cope. I
don't think that should be the message that you get. So, I guess that in
itself, made me battle more.
BIBLIOGRAPHY
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FAMILY PROFILE
Adolescent: Shaun
Age: 17 years
Sex: Male
Visual condition: Retinopathy
of prematurity
Visual impairment diagnosed
by doctor at 3-4 weeks
Totally blind
Tactual mode of communication
Other conditions: Mild cerebral
palsy
Hemiplegia (right side)
Intellectual impairment
Educational placement: Special School
Parent: Violet
Ages: 43 & (49)
Marital/Parental situation:
Separated
Shaun lives with his mother
and has contact with his father who lives in the same district
Vocations: House executive; (Labourer)
Siblings: Carmen Kate Jaymie-Lee
Ages: 26 years; 24 years;
20 years
Sex: Female; Male; Female
Family
Time in present community: 26 years in community; 16 years in present house
Most important to family: Caring, sharing, truth, love, happiness
Effective support systems: Family & friends, community services, CCS, IHC, RNZFB
'Gift' to other families:
"Seek counselling first to help with emotions - most important to be able
to move on. Gain as much information about the child's impairment as you
can. Find one or two persons who will help support family decisions when
faced with professionals."