Hope in Conductive Education - Part 1
Posted: Wed, 20 Jul 2022 12:21
I work as a senior Conductor at Steps Conductive Education Centre, an early years setting. Back in 2016 I conducted a research project on the impact of the process of diagnosis of cerebral palsy on parents attending Conductive Education with their children. This research showed hope, closely followed by optimism, was the support most needed by parents of a young child with cerebral palsy (CP). Following on from this, I am doing my PhD (University of Nottingham) on the meaning of hope for parents of children with cerebral palsy, within the context of Conductive Education.
This blog, which will be in 3 parts, is adapted from a recent conference presentation outlining my initial investigations into the existing literature. The first part will discuss factors affecting parents, the second part explores 'hope' and the third part is a discussion on hope and Conductive Education.
Whilst these discussions centre on parents of children with CP, I believe that these factors are not unique to them. In fact, it is possible that any family member involved with a child with additional needs may experience similar situations.
So why do many of the parents, attending CE with their children, need hope?
Many parents cope very well but for those of us working in Conductive Education, we see many parents who understandably really do struggle, often feeling some very deep emotions. Parents have described feeling confused, concerned, helpless, upset, frustrated, uptight, annoyed, isolated, insecure, overwhelmed, lost, vulnerable and anxious.
This last word "anxious" was mentioned many times in my previous research. This is significant when we are thinking of hope as fear and anxiety are often thought of as the opposite of hope.
What is behind these feelings?
There are many reasons why parents feel this way, in today's society, people are predominantly at the centre of their own self-organizing in terms of their lives and therefore experience an increased freedom of choice. However, this opening of possibilities of individual choice for many, may on the other hand marginalize the experiences of others through the fracturing of social ties and the creation of a lesser sense of family and community obligations. In the case of many of our parents, their decisions become socially patterned and "prescribed", rather than directed by a freedom of choice (Brock 2015).
Trauma, stress, power struggles, needing to be seen as a "good mother", stigma, lack of social support, changing relationships, isolation, and fears for what the future may hold all influence the freedom of choice for many of our parents.
Despite the family centered care philosophy that has been adopted by most health and social care organizations, the relationships between professionals and these parents have repeatedly been described as asymmetrical, non-collaborative and negative (McKeever and Miller 2004). Parents feel the lack of institutional support as they are continuously battling for services and fighting for EVERYTHING.
Mothers*, although assumed to be their child's primary caregiver and the "experts" in their child's condition, are dictated to and learn that a passive or compliant approach (as opposed to being more assertive) helps to get what they need for their children. This submission to those "in power" may also contribute to the social suffering and psychological distress of these mothers.
*The research in this field is dominated by a bias towards mothers as they have traditionally been seen as the primary carer. There is comparatively little research carried out with fathers. I discuss "mothers" from this research perspective, but it is acknowledged that mothers and fathers are individuals and do react in different ways. These factors can equally apply to fathers and extended family members.
The ties that mothers have with their children are hugely structuring of their personal lives and lived experience. Mothers of children with disabilities are particularly vulnerable to the social constructions of being the "good mother" ** (Medina and Magnuson, 2009).
In order to somehow accommodate their marginalized position, mothers can feel as though they have to maintain a self-image as a 'good mother', sometimes having to base their entire lives around the care obligations of their child. They become the self-sacrificing mother; the resilient mother; the activist mother; and the mother who gives labour and commitment beyond what others could endure.
The need that mothers of children with disability have, to project an identity as a 'good mother', pressures them so much that they can feel their other identities (as a friend, colleague, wife/partner) are overwhelmed. Mothers begin to neglect their own needs and rights which in turn creates even more marginalising experiences (Knight, 2013; Brock, 2015).
Mothers' lives become very different after having their child with cerebral palsy. They describe feeling unsupported by key people, socially rejected, and discriminated against. Parents are occupied with managing stigma on behalf of their child and managing associative stigma through their connections to the child. The stigma imposed by friends and society leads to a sense of isolation and results in difficulties in maintaining their own interests and social connections. Ultimately leading them to either withdraw socially or limit their socializing to a few close family members and/or other mothers of children with disabilities with whom they could feel safe and supported.
** The research into the theory of the "good mother" has predominantly been approached from a feminist perspective. Feminist research begins with the standpoints and experiences of women and is politically motivated in that it seeks to change social inequality.
As individuals, we have a complex web of personal relationships that make up our social networks or "personal community" which helps give structure and meaning to our lives. Having a child with a disability very often results in a lack of personal support, suggesting that these parents do not always have the freedom of choice in determining their own personal communities.
Many parents reflect on the ways in which the number and nature of their personal relationships change after having their child with a disability. It is not uncommon to experience negative attitudes from family, friends, and people within their communities. People may feel embarrassed or uncomfortable by a child with cerebral palsy, others struggle to accept the situation or come to terms with the diagnosis.
When parents' practical and emotional resources are stretched, they can feel isolated. Not just physically, but with a sense that their existing connections, their usual support structures, simply do not understand what they are experiencing. Parents desperately want and need the support from people in their personal lives but are often left feeling disappointed, socially marginalized, lonely, disconnected and isolated.
Parents are often overwhelmed by fears for the future. Asking themselves questions such as: How can I care for my child indefinitely over my life course? What happens when I am too old? What happens when I am no longer here? Parents have no choice but to rethink all their expectations for their future.
Taking into account the trauma, the stress, the power struggles, needing to be seen as a "good mother", the stigma, the lack of social support, their changing relationships, their isolation and fears for what the future may hold, it is no wonder that these are the times when a parent's hope is significantly challenged, and parents disconnect from themselves and others.
They can feel helpless, worthless, and eventually hopeless.
We need hope most when we are struggling or suffering. Emotional issues are one of the great challenges for parents of children with cerebral palsy (Mohd Nordin et al., 2019). Parents may have to cope with the loss of their dreams, their hopes and expectations for their child, the changing perceptions of themselves as parents, along with often receiving messages of "no hope" from professionals (Byrne et al., 2019). A lack of hope, or having your hope taken away, is both physically and psychologically draining (Roscigno et al., 2012), and maintaining hope when we feel that everything is stacked against us can be the hardest thing.
However, there are positive effects of post traumatic growth, allowing parents to negotiate the psychological impact and forge hope through these difficult experiences.
Brock, S.A.M. (2015) 'The individualization thesis and mothering children with disabilities', Journal of Family Studies, 21(3), pp. 261–281. doi:10.1080/13229400.2015.1086404.
Byrne, R., Duncan, A., Pickar, T., Burkhardt, S., Boyd, R.N., Neel, M.L. and Maitre, N.L. (2019) 'Comparing parent and provider priorities in discussions of early detection and intervention for infants with and at risk of cerebral palsy', Child: Care, Health and Development, 45(6), pp. 799–807. doi:10.1111/cch.12707.
Knight, K. (2013) 'The changing face of the "good mother": trends in research into families with a child with intellectual disability, and some concerns', Disability & Society, 28(5), pp. 660–673. doi:10.1080/09687599.2012.732540.
McKeever, P. and Miller, K.-L. (2004) 'Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices', Social Science & Medicine, 59(6), pp. 1177–1191. doi:10.1016/j.socscimed.2003.12.023.
Medina, S. and Magnuson, S. (2009) 'Motherhood in the 21st Century: Implications for Counselors', Journal of Counseling & Development, 87(1), pp. 90–96. doi:https://doi.org/10.1002/j.1556-6678.2009.tb00553.x.
Mohd Nordin, N.A., Hui Shan, E. and Zanudin, A. (2019) 'The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy', International Journal of Environmental Research and Public Health, 16(24). doi:10.3390/ijerph16245145.
Roscigno, C.I., Savage, T.A., Kavanaugh, K., Moro, T.T., Kilpatrick, S.J., Strassner, H.T., Grobman, W.A. and Kimura, R.E. (2012) 'Divergent Views of Hope Influencing Communications Between Parents and Hospital Providers', Qualitative health research, 22(9), pp. 1232–1246. doi:10.1177/1049732312449210.