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 »

19/02/2011 by lizit.

One of the questions I have been considering is the extent to which the practitioners within the autism domain can be considered a single community of practice, or whether there are a number of different communities of practice. My thinking has led me to consider inter-agency working and inter-disciplinary teams and has led me to various studies considering what happens at the boundary between organisations, professions, etc. It would seem that the boundary area can be seen as a place of opportunity, but also a place if disjunction and threat as it requires practitioners to see things from different perspectives to gain a common understanding. It has been suggested that one of the reasons why parents can feel side-lined from professional discussions is that the professionals are so busy sorting out their boundary issues, there is no room for the parental voice. In fact, the informed parent might even be seen as a threat to professional practitioners who are feeling vulnerable as they sort out their identities in an inter-disciplinary context.

The current issue of Sociology  includes an article discussing boundary objects (Fox, 2011). Although the focus of the article is on the adoption of new technologies and innovations, the concept of boundary objects could be of relevance in looking at the relationships that exist at the boundaries between communities of practice. Indeed, the context of the article is one of interdisciplinary working between different communities of practice. Fox suggests that boundary objects enable communication across boundaries and “empower members of different communities to transfer their own knowledge” (p 72).

In the AS domain, and SEN more generally, there are a range of artefacts which are shared between members of different communities of practice. These might include diagnostic reports, IEPs, Statements, etc. Boundary objects are said to allow different communities of practice to learn about each others perspectives and share meaning, but Fox also recognises that if they are inappropriately introduced, the may exacerbate difficulties rather than ameliorating them. He uses the example of Lister’s work in introducing asepsis, showing that originally Lister’s ideas were rejected by the medical establishment as by linking doctors with the introduction of germs to the patient, the doctor was perceived as part of the problem. Once the doctor was seen as part of the solution, with a shift of focus to the benefit of the patient, asepsis became acceptable, and it fitted the spirit of the time which was geared towards greater cleanliness and personal hygiene.

Putting this into an AS context, very often parents are anxious to receive a diagnosis for their child. The diagnostic report provided by the medical team is prized and is perceived by parents as a key to having their child’s needs addressed. However that same report may be seen in a different light by those responsible for educating the child. It may be that the education professionals do not share the medical perception of the child’s needs, or it may be that in order to meet the needs of one child might involve reducing support to another child (all too common a scenario in a world of scarce resources). Further, the formal diagnosis and recognition of a child’s needs might be the first step to the time and resource consuming process of a formal assessment of the child’s SEN and negotiations with the local authority to ensure appropriate provision is put in place. The parent might experience the school as obstructive rather than enabling in responding to the diagnostic report and addressing their child’s needs.

No doubt other artefacts could be similarly considered.

The question is, how can these artefacts, or border objects, be used to facilitate addressing the needs of children with SEN rather than as problematic.

Fox, N. J. (2011). Boundary objects, social meanings and the success of new technologies. Sociology, 45(1), 70-85.

Posted in struggle, boundaries, community of practice, empowerment, adoption of technology | Print | 1 Comment »

22/12/2010 by lizit.

I’m working through my interview data at the moment and a phrase struck me. The participant was talking about parents of children on the autistic spectrum, and she said: “… or you are deemed to be a very vocal parent who’s only got what they’ve got because you’ve been so pushy about it and you’ve fought the legal system.”

That got me thinking about something that occurred to me quite forcibly a few months during a writing course at university. The thought was where was the child and the child’s voice in all this. Sometimes it can be presented as though parents are fighting the education system, the health system, or whatever because they want to. Yet surely the parents only find themselves in this fight scenario because of the needs of their child. To have a child who is unhappy and can’t cope with the ‘normal’ stuff most children are believed to thrive on is heartbreaking for most parents. Is it that surprising that parents find a voice and will “move heaven and earth” (as it said in the brochure for a school my son once attended) to get their child the help they need? The parents are not trying to achieve a victory for themselves, but to get their child’s needs met - or are they?

But what does the child actually want? How much of a voice do they have in the process of securing appropriate educational provision? I’m not going to attempt to answer that here, but what I do want to recognise is how important it is not to lose sight of the child or young person in everything else which may be going on.

Posted in parenting, struggle, Aspergers/HFA, ASD | Print | 2 Comments »

07/12/2010 by lizit.

Every so often I read something and suddenly begin to realise that not only do I understand some at least of what I’m reading but I can actually apply it to my own work! Today was one of those days!

Through a message and link in CPsquare - an online community exploring communities of practice - I came across a couple of pieces written by Martin Packer. I hadn’t come across him before, but he had worked with Jean Lave around 1990 and had taught a course ‘Everyday Learning and Life’ with her. The pieces I was looking at were a conference paper presented at an AERA meeting in Montreal in 1999 and an article co-written with Jessie Goicoechea and published in Education Psychologist in 2000. Both explored the ontology of learning, though, as might be anticipated, the journal article had a more in-depth theoretical base.

The first thing I got from this reading was actually beginning to understand what the terms ontology and epistemology mean. I’ve encountered them enough times in various publications and I’ve looked them up in dictionaries, but never really felt confident that I understood what either term actually meant. In the context of these two pieces, both of which were concerned with learning, it became clear that epistemology had to do with knowing and to describe a learning theory as epistemological meant that it had to do with the process of gaining knowledge that could be tested - OK, it’s probably more complex than that, but that will do for me for the moment. Ontology is not about knowing but about being and becoming and learning approaches that can be described as ontological have to do with who a person is becoming through the learning experience. This in turn opens up the notion of learning being about personal change and finding an identity.

As this was dawning, I began to get excited. The initial focus of my research was exploring the learning journeys of those who care for and support children and young people with diagnoses of Aspergers or HFA. From the data I already have, I know that parents undergo a transformation from being a parent to becoming the parent of a child with an ASC to being the parent of a child with an ASC and that part of that transformation is about identity and part of it is about acquiring knowledge about the condition and support infrastructure. Similarly, teachers choosing to specialise in this area move from being a teacher to becoming a specialist teacher. The routes taken may be different, but there is a change. I would expect to see a similar move in other specialists and carers involved with young people on the spectrum. Obviously, not everybody will undergo that identity change. Some may acquire knowledge without any kind of transformative learning or change.

There have been a number of research studies examining the coping strategies of parents of children with Aspergers. Many of these have focused on parents’ perceived needs after receiving a diagnosis and principle amongst these is generally a need for information. Some have also looked at parents’ coping styles and identified different ways in which parents have coped physically, emotionally and spiritually with having a child who is different. One of my interests is the use of the metaphor of struggle within the literature and discourses and I have been tentatively wondering if there is a connection between struggle and coping. I can now see that both are in some ways connected with the process of becoming the parent of a child on the spectrum.

I’ve got a lot more thinking to do, but I have a sense of having got hold of a piece of the jigsaw and found where it fits.

Posted in coping, struggle, concepts, learning | Print | No Comments »

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 »

02/08/2010 by lizit.

One of my ongoing interests, which I referred to at the end of my last blog, is the sense of struggle which seems to be present in so many accounts of parents in relation to getting the needs of their children with autism met.

At the moment, one of the things I am working on is mapping what I refer to as the autistic spectrum domain. By this I am thinking of the different systems which together provide support and care to children on the spectrum or which otherwise impinge on their lives. This includes the diagnostic system (mainly health focused), the education system (which actually seems to be made up of a series of sub-systems with a divide between the school, where children learn, and the administrative systems, which determine resources and which decide on the appropriate school and whether or not to assess the child’s SEN), the social care system (which many families will have no contact with but which others may receive respite care or other services from and which may become involved if a child is placed in a residential school). These systems exist within a number of other systems or constraints which are less involved directly with the child and their family - the political/policy making system which determines the law and how it is interpreted, the legal system which both ensures the law is adhered to but also adjusts the law through case decisions, the financial systems which determine how much money is made available to local authorities to provide for the needs of people with disabilities - and the other side of the financial system which involves the benefits available to children and families and the affect of having a child with a disability on the earning capacity of parents and the costs incurred in raising the child.

I have been struck by references to the number of professionals involved in the life of a child with SEN. Chrissie Rogers and Katie Truss both list the professionals involved with their own children at given points in time and their accounts resonate with my experience. Reading a chapter written by Anne Edwards and Ioanna Kinti is causing me to reflect on whether one of the reasons for the struggle metaphor being used so often relates to the numbers of professionals involved.

Edwards and Kinti focus on boundary issues between professionals. They discuss the opportunities and struggles inherent in boundary places: “when boundaries are pushed out to include more people within them, threats to exclusive expertise, meaning-making and identity ensue.” There is a clear indication that parents are very much at the periphery when professionals are readjusting their own boundaries and coming to understand the professional practices of other disciplines. It was only as “practitioners from different backgrounds were able to recognise how much they shared professional values, they were able to work together on the common task ….”

A key question for me continues to be that of how is the expertise of the parent acknowledged and how does the parent become recognised as a practitioner in a community of practice - and indeed the issue of whether there is actually a community of practice or a collection of tribes warring for supremacy!

Edwards, A., & Kinti, I. (2010). Working relationally at organisational boundaries. In H. Daniels, A. Edwards, Y. Engeström, T. Gallagher & S. R. Ludvigsen (Eds.), Activity Theory in Practice: Promoting learning across boundaries and agencies (pp. 126-139). London and New York: Routledge.
Rogers, C. (2007). Parenting and Inclusive Education: Discovering Difference, Experiencing Difficulty. Basingstoke: Palgrave.
Truss, C. (2008). Peter’s story: reconceptualising the UK SEN system. European Journal of Special Needs Education, 23(4), 365 - 377.

Posted in struggle, boundaries, community of practice, ASD | Print | No Comments »