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.