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.

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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.

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