22/11/2010 by lizit.

Last Thursday I was sitting, talking to a woman at the drop-in centre I facilitate for parents with children with SENs. Her son, aged 14 and currently out of school, was playing with duplo on the floor nearby. He hasn’t been labelled as a school refuser, but hasn’t been in school this term, and previously he was refusing to co-operate with teachers or absconding from the school site. He has diagnoses of Aspergers and Dyslexia and currently has a reading age of 6 according to the psychological assessment done recently as part of his statutory assessment of SEN.

I first met this woman, I’ll call her Pam, a couple of months ago. She arrived at the drop-in very concerned about her son and adamant that he was not going to go to the school she understood the local authority were going to recommend for him. She knew he was being assessed for a statement, but she had very little understanding of the process, or what actions she could take to help him get an appropriate placement. Over the weeks, we have seen Pam become less angry and defensive and more prepared to listen to suggestions as to how she can build a case for placement at a school she thinks would be appropriate for her son. She has visited a number of schools and seen the range of options - and also found a school which her son would be happy to attend.

On Thursday, Pam arrived at the drop-in with the proposed statement. It could have been better written, but she had spoken to the SENCO at her son’s school and they had agreed it was probably OK. She had also spoken to the two schools, she did not want her son to attend, but she felt the local authority would be recommending. One had been very clear that it was not a good idea to admit a new pupil to an established group of students with special needs in the middle of Year 9. The other was clear that they could not offer the boy anything more than his current school had been able to. Both schools agreed to email the local authority saying they would not be an appropriate placement. She had also obtained a letter from her son’s psychiatrist to say that he needed to be in a specialist setting with staff who understood his conditions and his needs.

I suggested to Pam that she phone the local authority to check if they had received the emails. They said they had had no communication, but there was a panel meeting that afternoon when the boy’s placement would be discussed.

There was little else we could practically do, but Pam agreed to email me on Friday when she heard the results of the panel meeting. We also agreed that it would be appropriate for her to ask for a meeting to discuss school placement, if the local authority were still adamant about which school the boy should attend. It was while talking about the possible meeting, that Pam showed her concern. “I’m only a parent. They are all officials and I don’t know how to talk to them.” Pam had articulated the very reason why the drop-in had been set up. As another parent, and as somebody who has been through the whole SEN process, I understand how she feels and how much she needs support, and how much she feels wrong decisions are being made for her son. I want to step in and accompany her to meetings and tell the local authority how ridiculous they are being. At the same time, I want to enable and equip her to make her own case to the officials and realise that she can do it and that she is far more than “only a parent”, but a woman who can use newly developing skills to present her son’s needs.

In the end, I assisted her to write a letter - she is perfectly capable of writing letters, but needed the right turn of phrase to address the officials. At least she is using email now - when I asked her to email something to me a couple of weeks ago, she looked terrified. On Friday, Pam emailed me to say the local authority are still wanting to send her son to the school she regards as totally inappropriate. She had asked for a meeting and was waiting to hear when that might be.Next Thursday, I will see her again and we will talk about her preparation for the meeting and who she might take with her, either to help her to present her case or simply to take notes and support her. How much more than “only a parent” Pam is having to be as she learns knew skills and sets about supporting her son to get the education he needs and deserves.

Posted in SEN, parenting, struggle, Aspergers/HFA, education, learning | Print | No Comments »

18/11/2010 by lizit.

For some months, one of my concerns has been what to do with my interview data. I have read lots of material on qualitative data analysis and many different articles, and even books, which have used qualitative approaches of one sort or another.  Some of what I read resonated, but a great deal didn’t and I think I am only now beginning to understand where my personal sticking point is.

Some months back, I found the section on analysis in Merrill and West (2009) helpful. They pointed to a holistic approach and identified the danger in the use of computer-based analysis of fragmenting data. The tension between letting participants’ voices be heard and the abstraction necessary for theory building was clearly stated. Although they include a clear outline of their own approaches to analysis - and the two writers differ - I found what they were saying difficult to relate to relate to my own work. Perhaps there was a sense that I had to develop a coding structure and learn to use the available computer packages, or perhaps because I am ‘a techie’ there was a sense of there being another program here to play with - and I am never one to be defeated by technology.

Over the past few months I have attended training courses on using a much recommended computer package. I have installed it on my computer and worked through some of my interview data using it. I can understand the program. I can appreciate it is a very powerful program with lots of potentially interesting and possibly useful features. But I’ve found I am just not happy using it. The whole approach seemed to be moving me further away from the people who have shared their stories with me and from the real life impact having a child with Aspergers.

A few days ago, I came across an article which resonated with me. Savin-Baden (2004) discusses the problem of situating ourselves in relation to our data. She suggests that it can be easier to distance ourselves from the data through complex coding systems rather than engaging with the messiness inherent in people’s lived-in lives and goes on to say that using a computer package can “result in deconstruction rather than reconstruction of the data”. This was ringing bells for me.

In the course of her article, Savin-Baden mentioned that she encouraged her students to write a short biography of each participant following an interview. This could later be turned into an interpretative biographical account which could be shared with participants. One of the things I have been doing is writing summaries of each interview with a few biographical details of each participant. Was there perhaps a clue to a possible solution to my impasse in what I was reading?

Over the past couple of days, I have worked through one of my interviews. First, I read the summary and visualised the person and the setting in which we had met. I then listened to the interview while looking at the transcript on the screen. During this process, I was able to make some minor corrections to the transcript, but more importantly, I became aware of  key phrases in the narrative and was able to highlight these. I was developing a sense of this person’s expressed feelings and concerns and understanding why she had done some of the things she had done out of a real concern for her son. She had come to life again rather than being reduced to coded fragments. With that sense of the person who was speaking, I then returned to the transcript and copied (by hand in a notebook) the words which I had highlighted, grouping them under broad headings. Finally, I returned to my original summary and reworked that by writing a series of short sections each focusing on a theme which had emerged from the interview. The resultant document is a mixture of description, summary, the participant’s expressed opinions, my observations and some personal reflection of my own.

Although the document is very rough round the edges at the moment, I can see the possibility of working with it further, linking some of the ideas emerging in it to theoretical perspectives. I can also see that taking a similar approach to other interviews will give me a collection of documents which I can use not only to identify commonalities and differences, but to do so in the context of the life and experience of the storytellers. I can also see that this kind of document is more likely to lead to further dialogue with participants than the transcripts I have been sending them. As a reconstruction which includes some interpretation, it provides scope for participants to correct and offer new insights in ways a transcript, as raw data, does not.

I’ve still got to see how this will all work out in practice and I’ve still got to see what my supervisors make of this approach, but I feel much more OK in myself about this approach at the moment.

It would be interesting to hear how others have approached data analysis in contexts where the person as well as the content is important.

Merrill, B., & West, L. (2009). Using Biographical Methods in Social Research. London: Sage.
Savin-Baden, M. (2004). Achieving Reflexivity: Moving Researchers from Analysis to Interpretation in Collaborative Inquiry. Journal of Social Work Practice, 18(3), 365-378.

Posted in data analysis, qualitative research, methodology, narratives, learning | Print | 4 Comments »

14/11/2010 by lizit.

I’ve noticed over the last few months I’ve been blogging a lot less than I did when I first started this blog. Back then, I would often post two or three times a week, but now a few weeks can go between postings. I don’t think the purpose of the blog has changed.  It is still about exploring ideas related to my DPhil research. What has changed is the blog has become more visible. Rather than just a few close friends and associates being aware of its existence, what I write is now fed into an RSS feed and is available to a much wider audience.

What are the implications for me of going public? I think I am more guarded about what I put into the public arena. I am aware that I may be writing for an audience rather than essentially for myself. This means, I am less willing to post about ideas that are very undeveloped - sometimes not even embryonic. Possibly too, I am less willing to post ideas that may actually be novel. Is that a fear of  being laughed at or thinking some of my ideas may be interesting enough for somebody else to want to use and develop them before I’ve thought them through myself?I think too, I am more careful about how I write. My blogs have tended to be written on the fly without drafting and re-drafting, but now I think a bit more about the words I use and the way I frame what I say. The implication is that blogging takes more time and effort and becomes less easy.

Does it matter that I am blogging less? Yes, for me it does! It means I am not using the opportunity to play with ideas and concepts and make mistakes for fear of what an unknown readership might think.

The solution. If I can, forget the audience and allow myself to blog about the ideas I am playing with and the things I am trying to make sense of.

Having said that, it would be great to have some comments sometimes on what I write, if only to let me know there are people out there reading this or to confirm I am actually alone in the metaverse!

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02/11/2010 by lizit.

Just occasionally in my reading, I come across a book or article which really makes sense to me. I’ve just had such an experience!

Susan Snell and Karen Rosen’s article focuses on the experiences of 5 families, each with a child with special needs. The families are described as ‘veteran families’ with the implication of experience but also having passed through a number of struggles. The purpose of their study was to gain an understanding of “how parents master the job of parenting children with special needs”. The nature of the special needs within the families are not clearly defined - and are largely irrelevant to the article - but they do make it clear that the parents in each family have found their own solutions to the challenges they confront: “Each family found unique solutions to their own problems and challenges but the larger theme was one of a learning process where parents’ experiences, perceptions, behaviors and beliefs interacted to provide the context for healthy adaptation.”

The idea of a “learning process” resonates with my investigating “learning journeys”.

The major part of the article focuses on coping themes and processes, some of which relate to specific events and some are more generalised.

An initial event is that of finding out the child is different. Even though this was a very small sample, some of the parents had made a sudden discovery - at birth or following a serious accident - while others went through a process of gradual realisation. For one family, the process is described as having included much ambiguity, which mirrors the experience of some parents of children on the autistic spectrum who may initially receive an alternative diagnosis or be told their child is going through a developmental phase and will grow out of it.

It is suggested that an important part of the process is moving from a stance of protecting the child to one of accepting the child and giving them life skills to enable them to cope.

Four coping themes are identified: family congruence, cognitive coping, defining boundaries and external management styles. The latter two resonated strongly.

In looking at the autistic spectrum domain, one of my foci has been boundary issues. Here the family is described as a system. For some families the boundary will be tightly drawn around the nuclear family, while others extend the boundary to include members of the extended family and others. This is largely determined by whether others are experienced as an additional burden or genuinely supportive. This resonates both personally and with what I have heard from other parents with children on the autistic spectrum.The effort involved in convincing grandparents, aunts and uncles, etc, that a child is neuro-diverse and not naughtly, ill-disciplined or whatever, can be just too great alongside everything else!

In relation to external agencies, three styles are identified: confrontive questioner, compliant consumer and managing partner. As one of my questions relates to the extent parents can be participants in a community of practice with professionals, this is highly relevant. The suggestion made here is that in the early stages of diagnosis and treatment, the first two styles are prominent, but as parents become more confident and expert in managing their child’s needs, their stance changes so that: “Managing partners seemed interested in working with professionals and forming a partnership that allowed them to make final decisions, yet gave them frequent access to the expertise of the professional”.

One final point which resonated was the recognition that the article had focused almost entirely on the parents. As with most studies of children with special needs the voice of the child is absent, though unusually both parents were included in but one family, which was a single parent household. All too often, the only parent recognised is the mother.

So lots of themes. It will be interesting to see which of these match with what I am finding and what additional themes emerge.

Snell, S. A., & Rosen, K. H. (1997). Parents of special needs children mastering the job of parenting. Contemporary Family Therapy, 19(3), 425-442.

Posted in coping, SEN, learning | Print | 1 Comment »