29/04/2011 by lizit.

I facilitate a drop-in group for parents of children with SENs. Most of the parents who attend have children who have high functioning autism or Aspergers amongst their diagnoses.

Even though my research focuses on those who care for and support children and young people with diagnoses of Aspergers and HFA, I decided that it would be inappropriate to include this group in my research, apart from making personal requests to some specific individuals to interview them. My role in the group is to offer support and share from my own experiences and there was a clear conflict of interests between hearing confidential information in a support role and using such information in my research role. Further, if I had asked the consent of group users to use knowledge gained in the setting in my research, it may well at best influenced the operation of the group and at worst led to some parents deciding not to use the group because they could not rely on their circumstances being kept cinfidential.

However, from time to time I find myself in a conversation when I just wish I hadn’t made that decision. One such was a conversation this week. There were two parents with primary age sons, both with diagnoses of Aspergers and ADHD, and the discussion was about their concerns about aspects of their sons’ behaviours which were a cause for concern. As they spoke of some of their young sons’ aggressive acts, fascination with their bodies, and threats of violence to the point of murder, I was so reminded of my experiences with my son when he was much younger. Like them, I had been concerned by the cold and calculating way he had spoken of killing, and, like them, I was terrified that I might have a psychopathic killer as a son. I had forgotten those thoughts and feelings, but as I participated in this conversation, I remembered some of those dark times, and was so thankful that my son, now adult, is so different from what I feared he might be. Although nobody can guarantee how any child will develop, it brought some reassurance to these women that my son was now OK. But for me there was the dilemma of how do I include some of this content in my discussion of the struggles parents face in raising young people with ASDs.

Posted in boundaries, Aspergers/HFA, ethics | Print | 1 Comment »

24/04/2011 by lizit.

Following on from the Identity memo 1, I want to explore another area which is important to my research and which also has a long root in my life, namely my interest in disability and related areas.

I suppose my first conscious interest in disability was in 1966, when as a 16 year old I went on a working holiday to a Leonard Cheshire Home and met people who had quite severe impairments for the first time. At the time, I can remember being impressed by the ethos of the establishment - the concept of family and not referring to disabled people as residents or patients. It made enough of an impression on me, that I returned the following year and began to look at possible career options that might involve working with disabled people.

However, my awareness of health and illness goes much further back than that. Before her marriage, my mother had been a nurse and she retained an active interest in her profession, acting as secretary to the local branch of the Royal College of Nursing. She had done both mental and general nurse training, but her interest was in mental health and she would speak of her experiences and about how difficult it had been to enter her chosen profession - she encountered a lot of opposition from her family because of the low status nurses were perceived as having in the early 1930s when she commenced her training.

I would guess that my mother’s stories had quite a lot to do with me choosing to join the Junior Red Cross and undertake basic training in first aid, home nursing and child care.

I can’t claim that I thought much about disability again until about 1980 when I was working for a local authority as voluntary organisations liaison officer. I was involved in the planning of our response to 1981 - International Year of Disabled People - which led to two specific projects - developing an access guide for the borough together with the head OT and involvement in establishing a local disability association. I also got involved in setting up a parent support group. At a personal level, the spin off from this was taking a postgraduate Masters degree and doing a research project on local disability associations and the implications of them being run by and for disabled people or by able-bodied for disabled. This linked to the thinking of the Wolfenden Report on the future of voluntary organisations and the role of intermediary bodies and to the changes within the disability movement more generally that recognised that disability was not an obstacle to being able to run organisations, engage in social and political action, etc. I can remember being shocked by some of the attitudes I heard expressed by people then responsible for the voluntary/charity organisations and also being impressed by what I saw disabled people doing.

My next career move was to leading a multi-disciplinary social services team with a focus on disability and older people. As described in identity memo 1, a key element of my work there was enabling our ‘clients’ to have as much control as possible over the services made available to them.

Moves followed into voluntary organisation management and motherhood. It was as my son began to develop that disability became a much more personal concern. It was very clear that my son was exhibiting different behaviour from other children of his age, and though I put some of this down to the effect of living in Germany and being between cultures, concern was also expressed by the Kindergarten he attended. I was subjected to a very difficult discussion with the Kindergarten staff when I was effectively told that it was probable my son would never live independently and would probably not be able to attend a normal school. To say this was done clumsily and without warning is an understatement. The fact that the conversation took place in German made it all the more difficult - was I really understanding what I was being told.

Following initial assessments with a German paediatrician, we learned we were returning to the UK. My hope was that my son’s behaviour would settle once he no longer had to cope with two languages and different cultural expectations. The reality was that very soon his school were making referrals to the school nurse and we ended up with CAMHS and the start of the long journey to finding out what lay behind my son’s differences and getting appropriate support for him. That journey also led me, together with others, to set up a parent support group and convinced me that it was essential for parents to be adequately informed and supported so that they could obtain the support their children not only needed, but had a right to.

I could unpick those personal experiences a great deal more - the attitudes of the different professionals I encountered, the lack of knowledge some professionals had of the support infrastructures, the journey to getting a statement for a very able and intelligent child who just was not coping in school, the encounters with mental health services and the failures of services to address needs appropriately. Elsewhere I have documented the roller coaster of emotions I experienced and the details of that journey.

Now I am able to step back a little. My son is now an adult and is doing very well. But I am still actively involved in parent support groups and my personal experiences are very much the driver for my research. Sometimes I feel I am too close to what I am researching and too influenced by my own experience. At other times, I recognise that even when going through the worst of times with my son, I was operating both as parent and professional and maintaining a level of professionalism and objectivity which I did not feel.

A further aspect of disability is now impinging on my life and consciousness. My own health and fitness has deteriorated, to some extent because of my failure to care for myself appropriately, and I am having to recognise there are things I cannot do that I might want to do, but my energy levels are inadequate.

So throughout my life, I haven’t been very distant from issues of health, illness, mental health, disability, and SEN.

Posted in parenting, SEN, biography, empowerment, reflections | Print | No Comments »

24/04/2011 by lizit.

A recent blog of eLiz Hartnett’s caught my eye. In it she reproduces a diagram that she had seen at a recent conference and uses the diagram to reflect on the focus of her thesis and where it sits within her discipline.

I have been aware that one of the things I am tussling with is just where does my research fit, and looking at eLiz’s blog helped me to realise that part of my difficulty is the interdisciplinary nature of what I am doing and not being sure who I am addressing, or, in a disciplinary sense, where my focus is. Although, I am no closer to sorting that out, my attempt at diagramming did clarify some of the reasons why I am struggling.

My research focuses on a sub-set of the SEN system and I am using that sub-set to explore the metaphor of struggle and fight which occurs frequently in the language used in academic literature, policy documents and conversation. Drawing clarified that not only is struggle prevalent in a whole range of different ways in the system, but it is also prevalent in the theoretical framework. Maybe it is no wonder that I have problems sorting out where I am looking and where I belong!

I sense this is a diagram to come back to and work with some more, though I suspect it might be one of those diagrams that becomes increasingly confusing, before it becomes clearer.

Posted in SEN, struggle, systems | Print | 1 Comment »

18/04/2011 by lizit.

A colleague on #phdchat has drawn my attention to a chapter in Maxwell (2005) on conceptual frameworks. I found this an interesting, informative and challenging read, particularly enjoying the use of diagramming techniques to understand the theoretical and conceptual underpinnings of a research project. This reflected some of my experience in refining my ideas and I will return to using mapping in the near future. As interesting, and in some ways more challenging, was the recognition of personal experience being an important part of a conceptual framework. Maxwell cites a number of writers including Reason (1989) and C. Wright Mills (1959) to support the view that life experience is valid. Reason’s introduction of the term “critical subjectivity” lends weight to the view that it is possible to be both subjective and objective.

Amongst the many suggestions made in the chapter is one of writing a note, or identity memo, reflecting on the development of ones own interest in the research topic, or aspects of the research topic. This seemed a helpful notion to me as a couple of aspects of my research are tapping areas which I have had a long term interest in. This posting reflects on the first of these, the whole area of what I have referred to as ‘ownership’ but which in academic speak seems to be ‘agency’ - but it may be that ownership is just a facet of agency - let’s see.

I am not sure whether my thinking about ‘ownership’ belongs initially to undergraduate days or first employment. My first degree was a combination of academic and professional education, leading to a degree in Applied Social Studies and a Certificate of Qualification in Social Work. There was a strong emphasis on psychodynamic psychology, which I realise now was focusing on ‘deficits’ in people with problems, rather than their strengths. I reacted quite strongly to this approach, being unable to reconcile it with the real world people were living and struggling in. Perhaps fortunately, one of my placements was more concerned with societal change than with changing individuals, and when I graduated, it was perhaps inevitable that I gravitated towards community development. It seemed to me that the basic tenets of community development - not doing things for people, but working together to achieve change - made more sense and also fitted better with my personal faith position as a Christian.

Through a series of community work posts, I became more increasingly convinced that it was important for people to both own their problems (wherever they came from) and also to own the means of tackling those problems and resolving them. I was influenced by the disability movement and the insistence that disabled people were not to be pitied but were perfectly able and capable of doing more or less anything given appropriate resources and removal of the attitudinal and physical barriers which restricted them. As a social services team leader in the early 1980s, I insisted on holding meetings bringing together people, who were our clients only because of age or impairment, and the service providers, from my own organisation and others, to agree together on appropriate ‘care packages’ - if somebody wanted to use the 3 hours a week home care service we could offer to get their house cleaned rather than their shopping done, that was their decision and right and we did not have the right to tell them what they needed. I did not see why professionals should make decisions for adults who were capable of making their own decisions if given the opportunity to do so.

Moving on, I held senior positions in 2 voluntary organisations. In one of those, the primary focus was on negotiating a contract for the provision of services - a notion which has become normal, but was then being trialled by a few local authorities with a few voluntary organisations. My concern was that this would lead to a commercialisation of the voluntary sector, removing some of its scope for innovation and challenge of the state, but also an awareness that underpinning the transfer of services from the state to the voluntary sector was an economic imperative to save money and I was not prepared to engage in fund-raising in order to do the work of the statutory sector. In the second organisation, the situation was more complex. It was a pan-London, church-based organisation with a network of projects throughout London. Funding was a mixture of local authority grants, money given by churches and a diocesan grant. Over the years, the projects had become more professional and local church groups were questioning why they should fund these activities, especially when they were unable to gain much information about what was being done in their name because of client confidentiality. Although the work was of high quality, it was removed from the churches with the unintended consequence that local churches neither owned the work nor felt any obligation to engage in social action themselves as they were already funding the projects to do this on their behalf. My view was that it was essential to return ‘ownership’ to the local churches and to enable them to identify what was appropriate social action in their areas, if necessary reconfiguring the professional projects. It was a very difficult time as it felt as though I was dismantling rather than building.

Time moved on. I became a mother and spent a few years living abroad. When I returned to the UK, I knew I could not realistically return to my previous career. I retrained, gained new interests, and developed an interest in educational technology. But my personal life was taking me in a different direction as it became clear my son had SEN. I was able to use my knowledge and skills to gain an understanding of the system and to ensure my son got the help and support necessary for him to achieve his potential - I owned the problem and exercised my agency. I knew other parents were not necessarily able to do this - they were effectively disabled - and became involved in voluntary initiatives to enable other parents to act.

I am not anti-professional - I have been involved in professional employment of one sort or another most of my adult life. I am against professionals disabling others when they could be informing and enabling people to take control of their own lives and own their problems and difficulties so as to engage in action to become the people they want to be. I still remember the amazement expressed by a social worker on a holiday project when she saw ‘inadequate parents’ organising activities and taking responsibility for large groups of children. By focusing on the positives, the difficulties can be overcome, albeit with struggle.

So my perspectives on ownership/agency are a mixture of personal belief, gut feeling, work experience, observation…

Maxwell, J. A. 2005. Qualitative Research Design: An Interactive Approach, Sage Publications, Inc.

Posted in biography, empowerment, concepts, ownership | Print | No Comments »

06/04/2011 by lizit.

Another #phdchat inspired posting.

Last month the UK government published a consultation document, or green paper, outlining a number of changes they are planning on making to the special education system. There are various reasons for wanting to change the system, including saving money, but the ones that interest me are about the system being too complex and too adversarial. Both of these seem to be accepted as facts without any real explanations why. So what I am doing is drawing pictures to try to understand the system and using these to find out why the system gets described as a battlefield.

As well as drawing pictures, I am talking to people who have been involved with the Special Needs system. These include parents of children on the autistic spectrum, teachers, support workers in schools, doctors and therapists. I am asking them to tell me their stories of how they have learned about the autism and about the SEN system.

Some parents tell stories of how helpful a specific teacher or doctor has been and how well their child is doing. Others talk about problems getting help for their child and some talk about their child being excluded from school and sometimes being out of school for a long time. The education and health workers talk about children they have worked with and learned from. They also talk about needs that are not met and very often have very little idea what happens in other parts of the system.

I agree with the government that the SEN system needs to be changed, but I am concerned about changes designed to fix a system if we don’t really know why it is broken to start off. I hope my research will help explain why the system is broke and will help in understanding whether the proposed changes will fix it, or may actually lead to more problems.

Posted in SEN, ASD, research ideas | Print | 12 Comments »

04/04/2011 by lizit.

Having read Martin Eve’s and Jennifer Jones’s blogs outlining where they are at the planned halfway stage of their PhDs, it struck me a progress check might be in order.

In theory, I’m now two and a half years into my DPhil journey, except the journey hasn’t been that straightforward. In October 2008, the plan was to do work around Second Life/Virtual Worlds and education. That continued to be the primary focus until the following May, when I had to rethink things somewhat as the initial plans had fallen through for reasons beyond my control. Initially, it was just a tweak, in that the focus stayed with virtual worlds/Second Life but instead of looking at formal learning, I began to look at informal learning and community building. That was a real option, until November 2009.

In November 2009, as I started exploring a different methodological approach, it became appropriate to look for some additional consultation on the way ahead. That consultation session proved a dramatic turning point, and although the previous 14 months was not completely irrelevant, my research moved away from virtual worlds to being located ‘in a domain that I knew well’. In some ways, that is the true start date of my DPhil, and one of the things I have had to do over the past few months is stop trying to incorporate stuff that is no longer relevant in my thesis - it’s not wasted, just not relevant to the subject in hand.

There is a sense of loss over changing direction and letting go of things. Two years ago I considered myself, and was considered by others, part of the virtual world research committee. I had co-authored a journal article and a book chapter and presented at several conferences and knew many of the people active in that research community. Sometimes, I think I was a fool not to stay with what I was doing, but most of the time, I know it was the only real option as I am involved and passionate about what I am now doing.

What have I achieved in since changing direction. If it is measured in terms of external outputs, very little so far, but then I have moved into a new discipline and it has taken time to get a sense of the academic and theoretical landscape that I now inhabit and to begin to form links with others working in the same area. I wouldn’t say I have a network that emulates that which I had previously, but I am getting there. I am also starting to feel more comfortable with the language and culture of the social sciences - somewhat different from informatics where I was previously located.

On the other hand, I have defined my research questions, gathered a lot of data, sorted out my theoretical frameworks and analysis methodology, written a thesis outline and can see how the completed work might look. The current task is to construct a complete first draft of my thesis, while continuing to collect and analyse data. What I do need to give serious thought to is how to get my head above the parapet in terms of conferences and publishing - but maybe some of that can wait for the moment.

So in brief, I’ve made a beginning, achieved a successful U-turn and am now proceeding in an orderly fashion towards my destination, needing to decide whether to take the scenic route, or whether to stick to the motorway and then turn off to explore the countryside.

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