“It’s a Battle!”: Parenting and Supporting a Child with Dyslexia

Abstract

Parents and carers supporting their children with dyslexia liken their experiences to battle, when trying to secure appropriate educational provision for their children. This chapter expands our understanding of parents’/carers’ experiences through exploration of both academic studies, reviews and gray literature since the Assent of the Children and Families Act 2014 in England. Using a Bourdieusian framework underpinned by Jenkins’ ‘levels of interaction’, this chapter studies parental/carers’ experiences of dyslexia and procurement of appropriate educational provision for their children with dyslexia. Parents’/carers’ internal sense-making of dyslexia is explored. Connections are made between this sense-making and the nature of parents’/carers’ interactions with their children and education professionals. These interactions, as underpinned by individuals’ understandings of dyslexia are then explored in the context of the social positions occupied by parents/carers relative to others within the field of education. Parents’/carers’ capacity to engage with professionals, and contribute meaningfully to decision-making processes through embodiment of necessary habitus is exposed through analysis of individual sense-making, interactional exchanges and institutional relationships. Practical and theoretical implications of parents’/carers/sense-making of dyslexia, their interactional experiences, and embodiment of habitus are then described in a ‘Who, What, When and How’ overview of parents/carers supporting a child with dyslexia.

1. Introduction

In this chapter, ‘levels of interaction’ [1] are combined with Bourdieusian concepts of habitus, field and practice to explore parents’ experiences of their children’s dyslexia within an English policy context. Dyslexia is a contested phenomenon [2, 3, 4] within literature, practice and media [5, 6, 7]. This is despite the British Dyslexia Association [8] providing a robust definition, which incorporates ‘testable’ characteristics to allow for diagnostic assessment of difficulties.

However, some institutions refute the existence of dyslexia as a discrete phenomenon [2], leading to rejection of or refusal to diagnose [9, 10]. For parents this leads to challenges in supporting their children. If dyslexia does not exist, then literacy difficulties are the ‘fault’ of the child, the parents are overreacting and schools are not obliged to make concessions to support children or their parents. This chapter explores how parents at the ‘individual level’ make sense of their children’s dyslexia and reframe it as an ‘inclusive’ and positive phenomenon. As interaction between professionals and parents can be problematic [10, 11, 12], we explore at the ‘interactional level’ how parents’ sense-making and reframing of dyslexia underpins their interactions with their children and empower them to engage with schools [13]. Where communication is problematic, barriers to positive interaction are delineated and contextualized within wider structures. Political constructs within education in England place the onus for inclusion on professionals, settings and Local Authorities [14]. However, studies have found that parental participation is not always productive or meaningful, despite policy expectations [10, 15, 16]. As such, exploration of institutional roles and policy within this chapter is important to understand structures which impede parents’ active participation in their children’s education. Habitus and transformations within parents, professionals and wider structures are discussed, so that practical recommendations can be drawn from literature and exploration of each level of interaction.

2. Dyslexia: what is it?

Dyslexia is a condition whose definition and existence are contested. Some research disputes its existence as a scientifically ‘testable’ condition [2]. Other work explicitly states that those with dyslexia and ‘poor readers’ should not be conflated [3]. Rather, Frith [3] and the British Dyslexia Association [8] argue that dyslexia is an underlying neurological difference that is the root cause of some reading difficulties. Formal definition of the neuro-biological impairment that leads to dyslexic-difficulties is outside of the scope of this chapter (significant work has been undertaken on this elsewhere [3, 17, 18]). However, a functional working definition of dyslexia and an understanding of its characteristics is necessary. It is also important to understand the connection between medicalized and social models of dyslexia. This underpins exploration of parents’ personal conceptualizations of dyslexia at the ‘individual level’, during their interactions with other individuals and through their interactions with institutions.

Medicalized views of dyslexia locate its root causes within the individual with little-to-no reference to structural factors affecting it [19]. Solvang [20], Ross [15] and Calfee [19] found that language surrounding ‘diagnosis’ of dyslexia frame it as an internal ‘impairment’ within the individual. This serves to explain why children experienced difficulties and removes parents’ ‘fault’ for their children’s dyslexic difficulties. Others argue that external, structural factors should be considered in the conceptualization of dyslexia. Riddick [4] suggested that locating cause purely within the individual is an oppressive model, which disempowers individuals to argue for changes within their environment.

Other work locates causes of dyslexia outside of the individual to define dyslexia through cultural and social norms [21]. However, this view of dyslexia does not consider neurological differences between individuals, which predispose them to dyslexic difficulties. This is also problematic, as there is potential for individuals to understand reasons for their difficulties as being outside of their control, leading to disempowerment and oppression when they experience dyslexic-type difficulties. As such this paper draws on a bio-social model of dyslexia congruent with earlier work by MacDonald [22] and Ross [11, 15]. This model allows for consideration of underlying impairments within the individual, and external, social factors which act to emphasize or minimize effects of that underlying impairment.

Although various definitions of dyslexia exist [23, 24], which draw on both internal difficulties and consider effects of social factors on individuals, for the purposes of this chapter, the British Dyslexia Association definition of dyslexia [8] will be used:

“…[dyslexia is] a learning difficulty that primarily affects the skills involved in accurate and fluent word reading and spelling. Characteristic features of dyslexia are difficulties in phonological awareness, verbal memory and verbal processing speed. Dyslexia occurs across the range of intellectual abilities. It is best thought of as a continuum, not a distinct category, and there are no clear cut-off points. Co-occurring difficulties may be seen in aspects of language, motor co-ordination, mental calculation, concentration and personal organization, but these are not, by themselves, markers of dyslexia. A good indication of the severity and persistence of dyslexic difficulties can be gained by examining how the individual responds or has responded to well-founded intervention.

In addition to these characteristics: The British Dyslexia Association (BDA) acknowledges the visual and auditory processing difficulties that some individuals with dyslexia can experience, and points out that dyslexic readers can show a combination of abilities and difficulties that affect the learning process. Some also have strengths in other areas, such as design, problem solving, creative skills, interactive skills and oral skills.”

It describes both behavioral manifestations and also outlines diagnostic criteria, namely poor phonological awareness, memory and processing. This is useful when considering the experiences of non-professionals, and how they understand dyslexia and its effects.

3. Dyslexia, Bourdieu and Jenkins: theorizing dyslexia and identity within education

Dyslexia, Bourdieu and Jenkins may be an unlikely grouping in the development of theoretical frameworks. While dyslexia and identity have been considered sociologically [4, 22], a unified theory to facilitate exploration and analysis of its effects on individuals, their identities and interactions, and ability to engage with social structures is lacking. Ross’ [11, 15] work pragmatically knitted together ‘levels of interaction’ [1] to explore stakeholders’ experiences in the development of support interventions for young people in school. Key concepts are defined in this section. They are then related to the field of education, and the specific area of interest for this chapter: dyslexia-support for young people and the experiences of their parents/carers.

3.1 Bourdieu’s ‘field’, ‘habitus’ and ‘practice’

The ground-breaking concepts of ‘field’, ‘habitus’ and ‘practice’ described in Bourdieu’s seminal work ‘Outline of a Theory of Practice’ [25], are central to understanding how dyslexia influences an individual’s experiences of education and related interactions in that field. Bourdieu [26] argued that the social world around us is produced through social interactions, actions and thoughts of social actors.

Of the three central tenants of his sociological project, the ‘field’ is perhaps the easiest to define. Bourdieu [27] viewed the field as “a simple idea: it designates a system of objective relationships between positions, implies a relative autonomy etc. but it is difficult to put into practice”. Largely, when operationalizing the concept of field in line with Bourdieu’s sociological project, it is best understood as the space within which social actors’ relationships are defined by their relative positions in that space. The field of education is where parent-professional interactions relating to dyslexia support for young people take place. Within the field relative positions of parents/carers and parents are defined and (re-)produced through those interactions.

The set of social norms and expectations associated with different roles/social positions within a field is viewed by Bourdieu as both an internal process and an externally perceptible object. He named this set of norms and processes ‘habitus’, a concept that he continually revisited and developed for the duration of his sociological project. Defined as, “both a system of schemes of production of practices and a system of perception and appreciation of practices … habitus produced practices and representations which are available for classification which are objectively differentiated,” Bourdieu’s [26] concept of ‘habitus’ encapsulates these sets of expectations, as something that is ‘done’ within a social setting. When these expectations are then embodied, produced and reproduced by others within a field, propagating social positions they become the ‘done thing’. The embedded set of ‘done thing’ habitus can then be described as a set of ‘practices’.

Through the lens of these cornerstone concepts within Bourdieu’s sociological project, we can explore the experiences of parents and carers within the field of education as they navigate systems for supporting young people with dyslexia. As parents/carers make sense of dyslexia, the habitus necessary for positive, constructive engagement with other individuals implicated in supporting their children and the wider institutions of the field is delineated. The capacity of parents/carers to embody that habitus and engage with social structures at institutional level can then be investigated.

3.2 Roles and values in education

Prior to discussion of different roles in education, it is important to address underlying philosophical assumptions associated with it. Bourdieu [25] argued that practices and values associated with education are largely white and middle class. He viewed the field of education as a site of production and reproduction (propagation) of social positions, relationships and power differentials. The power differentials encapsulated in the social relationships between individuals in a social field thus act to maintain a status quo. With this in mind, he reasoned that teachers, and other ‘state functionaries,’ are inculcated by the habitus of their social position and role to exclude actors whose habitus does not align with that of positions of power within education. Where values do mis-align, individuals experience a ‘clash’ in values, known as a ‘dialectical confrontation’ [28], which may result in modification of that individuals’ embodied habitus. However, where personal values do not align with the values of the education system, and the actor’s embodied habitus remains unchanged, their difficulties in meaningfully accessing systems related to education will remain [28].

Bourdieu [25, 26, 29] considered the ‘State’ as controlling some social categories, defined by him as ‘official identities.’ These identities, and the roles occupied by social actors are objective social structures according to him [25, 29]. Within education, the ‘State’, via universities and training providers, acts as gatekeeper to the status of ‘Qualified teacher’ in England. The status is granted following successful completion of academic and work-based elements of government-approved teacher-training programs and an in-school ‘induction year’ [30]. Other professionals, such as educational psychologists, occupational therapists, and physiotherapists must also acquire professional qualifications. These qualifications allow those professionals access to formal positions in the field of education, based on those credentials. These professionals then are afforded, by their professional status, the capacity to affect the type of support available to young people. In many cases they act as gatekeeper to that support. In so doing, congruent with Bourdieu’s findings, these professionals’ actions act to propagate their dominant positions within the field, affording them power over other social actors.

Within a school, the ‘Special Educational Needs Coordinator’ (SENCo) and other teachers are responsible for provision of support for young people with Special Educational Needs and/or Disability (SEND) [14]. They act as stewards for resources and support for those who have identified need. However, in some cases identification of need can only be undertaken by certain professionals, such that needs are not always formally and fully identified. Mainstream teachers and SENCos cannot formally identify need without further training. The lack of formal diagnosis or identification of need may then impact on young people’s ability to access appropriate resources and provision. Teachers may be aware of need but not know how to support young people appropriately.

Within education, the propagated, middle-class values which call for children and young people to conform to ‘normative’ values [31] act to exclude young people with special educational needs and disability (SEND). They rarely conform to normative expectations and often require specialized support. Thus, within the field of education, a young person with SEND may be unable to embody the necessary habitus to successfully navigate the practices of the field. Despite being expected to actively engage in decision-making processes relating to their own educational provision [14], in reality, young people are often subordinate and unable to meaningfully access these processes [11, 16]. Their views are more likely to be represented by their parents/carers in formal settings, reinforcing their subordinate, oppressed position within that field.

In policy the role of parents/carers in supporting their children with SEND appears to be relatively straightforward: they are expected to be fully “involved in discussions and decisions about their individual support” [14]. This expectation reflects legislative directives [32]. Other stakeholders should make adjustments where necessary to facilitate parental/carer involvement in decision-making relating to support for young people. However, the detail as to how this should be undertaken has not been given. In fact, research has shown that the enactment of this legislation and guidelines has been unsuccessful in ensuring the active and meaningful participation of parents/carers in discussions about provision for their children [16, 33, 34]. This is indicative of a system that is not fulfilling its brief. Where parents’/carers’ roles are unclear, their capacity to positively, meaningfully and productively engage in decision-making processes for their children’s education is hindered, and their capacity to enact agency and effect change is severely limited. This can leave them feeling powerless and impact negatively on future interactions with actors in the ‘field’ of education due to the negative effects of oppression and powerlessness on their internal sense-making of their situation.

3.3 Identity construction

A significant volume of psychological and sociological research has explored the processes which underpin the formation of identity. In this chapter, we focus on work that considers identity as a social process. That is, that identity is constructed both through internal sense-making of self in relation to one’s social position within a network and also through interactions with others in that network. Social position is a key factor in identity construction within the sociologies of Bourdieu [25] and Jenkins [1], as well as in social-psychological studies.

Within Bourdieu’s sociology, institutions and ‘roles’ may act as social agents, acting to oppress and promote others within their field depending on their relative positions and roles. As such, a broader framework is necessary so that different types of interaction between different types of social actor may be considered intersectionally. The sociological work of Richard Jenkins [1] around identity and its formation suits this purpose ideally. He believes that the social world and its interactions influence how identity is constructed and reconstructed constantly through social relationships. Thus, his theoretical concepts may be interweaved with Bourdieu’s sociological project to produce a powerful theoretical framework to explore roles, relationships and power-differentials within social fields.

3.4 Bourdieu and Jenkins

At first glance, Jenkins and Bourdieu may not appear an obvious ‘pairing’. Jenkins [35] viewed elements of Bourdieu’s sociological project as unsuccessful in their attempts to bridge the subjectivist-objectivist gap. It is argued that Bourdieu’s frameworks inadequately consider people’s own individual agency [35]. Jenkins viewed ‘structuralism’ as imposing itself on actors, and minimizing their individual capacity to enact agency [35]. However, a central tenet of both Bourdieu’s and Jenkins’ work is that external structures exist within the social world and influence the identity, interactions and actions of social agents within a field. ‘Levels of interaction’ [1] model the social world through exploration of interactions at three levels and Bourdieu’s ‘habitus’, ‘practice’ and field also explore social actor’s interactions within their social context. Both Jenkins [1, 35] and Bourdieu [25, 26, 27] viewed the social actors and their context as inseparable. It is this unifying feature which allows for combining of their sociological frameworks through which to explore the social world.

3.5 Levels of interaction and dyslexia

As has been shown elsewhere, Bourdieu’s concepts of ‘habitus’, ‘field’ and ‘practice’ [25, 26, 27] and Jenkins’ ‘levels of interaction’ [1] have been successfully knitted together to develop a strong theoretical framework to analyze social interactions [11, 15]. Through this framework, barriers to parents’ meaningful participation in discussions about provision for their children have been uncovered [15], and teachers’ roles in provision for young people have been explored. This was done through the analysis of habitus, practice and field at different ‘levels of interaction’ [1].

The ‘levels of interaction’ are defined thus [1]:

• “the individual order is the human world as made up of embodied individuals and what-goes-on-in-their-heads;

• the interaction order is the human world as constituted in relationships between individuals, in what-goes-on-between-people;

• the institutional order is the human world of pattern and organization, of established-ways-of-doing-things.”

Young people’s views are traditionally represented by their parents in policy forums, as parents (or carers) are legally responsible for them [36]. This is despite expectation that young people’s own views are considered independently [14, 16]. Therefore, it is vital to understand how parents conceptualize dyslexia and subsequently their children’s identity as a ‘dyslexic,’ as this will affect how their children’s views are represented. As noted in [1], identity and social interactions are inseparable and mutually constructing. The ‘concepts of self’, informed by dyslexia thus influence parents’ interactions with teachers at the ‘interactional’ level. Objective structures such as age, gender and social class influence interactions significantly. At the institutional level, these structures act to impede or facilitate social exchanges due to the requisite habitus and its (lack of) embodiment. Parents’ capacity to embody a habitus affects their ability to successfully navigate structures around SEND provision for their children [15]. Insights relating to this suggest that barriers are complex and habitus ‘clashes’ occur [28].

Using this theoretical framework, this chapter will explore formal academic literature and ‘gray literature’ [37] to further develop our understanding of parents’ participation in processes related to supporting their children with dyslexia. Individual understandings of dyslexia will be discussed, and then interactions between stakeholders in decision-making processes will be outlined. Finally, systemic relationships will be uncovered, and their implications described.

4. Making sense of it all: parents’ understandings of dyslexia

In this section, how parents make sense of their children’s dyslexia is discussed. The varied understandings and sources of parental information are highlighted. The internal conceptualization of a ‘dyslexia’ which bolsters them in supporting their dyslexic children, as discussed in [15], is expanded upon. We then reflect on the sense making that takes place and how it underpins parent’s interactions with others in relation to their child’s dyslexia. In so-doing we draw on Ingram’s [28] understanding of ‘dialectical confrontation’, and Bourdieu’s [25, 26] concepts of habitus and field.

4.1 Dyslexia: a parental understanding

Parental conceptualization of dyslexia is not a static phenomenon. It is a dynamic and ongoing process, altering as parents progress along their journey as ‘parents of dyslexic children’. Prior to their child’s diagnosis, Ross [15] found that parents located difficulties within their child. Young people’s struggles were their own fault, rather than due to something outside of their control. Although writing in the early 1980s, Hartwig [6] had already ascertained what much research now reinforces: there was (and still is) much debate about the nature of dyslexia, its causes and its effects [2]. Parents did not, and do not always have a full understanding of dyslexia and its implications. A diagnosis or mention of SEND may strike significant fear into parents. They may be aware of potential battles ahead [7] or fear that their children are not ‘normal’. This is particularly the case for parents who have dyslexia-type difficulties themselves and experienced education adversely [38]. Dyslexia is often not understood by parents [5] who may view their children as weak academically, and not realize the effects of the underlying impairment. That said, parents were largely aware of the external manifestations of their children’s dyslexia; their children were poor spellers, reluctant writers and unenthusiastic readers.

However, upon ‘diagnosis’, parents’ reframing process began. Solvang [20] notes that parents drew upon medicalized discourses which placed blame for young people’s literacy difficulties squarely at the feet of their dyslexia. There was a reason for their difficulties: an internal force that young people could not control or overcome without support. Medicalization of dyslexia to relocate blame is a common theme in literature. The label of dyslexia became a source of relief and strength for parents; they could definitively say why their children had difficulties [12]. There was something ‘wrong’ with their children, but it wasn’t theirs, or their children’s fault [15, 20]. Dyslexia was something tangible, making learning difficult for their children.

4.2 My child has dyslexia: what next?

Once parents begin to make sense of their children’s dyslexia as the root of their difficulties, then a sense of ‘what next’ arose. Ross [15] found that a significant aspect of parents’ individual sense making and conceptualization of dyslexia linked to positive reframing of it. However, Woodcock [7] found that dyslexia can be a distressing and demanding experience for families. This chimes with other reports of anxiety and stress connected to schooling [39]. However, assessment and subsequent diagnosis of dyslexia has been found to be a source of empowerment for parents and children alike in much work [4, 20, 40].

The guilt, for blaming children for their dyslexic-difficulties, experienced by many parents [10, 15] acted as impetus for them to find out more. As noted in [41], “Acquiring knowledge is the basis of increased confidence”. Information about dyslexia and its implications is a key factor highlighted in much literature. For some parents, a diagnosis of dyslexia may be a means to support their child and build up their self-esteem [9]. Parents seek the positives around dyslexia. They search for affirmations that there are benefits in the label, looking to their peers, media sources and celebrity role models for a sense of their child’s potential [41]. Spaces in which parents could make sense of dyslexia and its impact are a key theme noted [15, 42]. Through the reframing of dyslexia positively and inclusively, “to include more affirmative, strength-based perspectives” [13], parents’ can embrace their child’s dyslexia, and see benefits as well as its drawbacks.

While sense-making and reframing of dyslexia positively take place at the individual level, internally within each individual [1], foundations are laid at this level for inter-personal interactions and the presentation of ‘self’ in these interactions. The ‘sense-made’ of dyslexia, encapsulated at the individual level underpins, parents’ interactions with other individuals as they support their child within the field of education [11, 15].

4.3 Moving forwards and outwards

To conceptualize how parents move forwards as ‘parents of young people with dyslexia,’ we need to understand their internal sense-making and its subsequent role underpinning interactions with individuals around them. Ingram [28] discusses the habitus of working-class boys, rooted in their home-setting and how, when they are exposed to the conflicting ‘habitus’ of their school setting, a ‘dialectical confrontation’ takes place. She argues that habitus, in the Bourdieusian sense can be formed across mismatched fields. In the case of dyslexia and schooling, the central ‘field’ is education (their children’s school) and their parenting habitus. We can draw on this concept when considering parental reactions to their children’s dyslexia diagnosis.

Within literature there are commonalities documented in parental experience before their children receive a diagnosis of dyslexia. High stress is commonly documented and frustration that their children find engaging with education difficult. As noted above, parents frequently blame their children for the difficulties they have in school. They believe that lack of effort or attention are the root cause of their children’s educational difficulties. Their habitus as parents is formed around their role of parent of a ‘lazy’ child, who is academically underachieving without ‘good’ reason. However, receipt of a ‘diagnosis’ of dyslexia exposes parents to a new habitus. A new ‘field’ becomes accessible to them in that moment: parenting a child with an educational need. Their position has shifted. They become a parent whose child has a need, which is making learning difficult for them. This new position initiates a ‘dialectic confrontation’ where their familiar habitus is disrupted and space created for adaptation. In processing this ‘dialectic confrontation,’ parents seek knowledge, and reflect on dyslexia and its meaning. This reflection underpins attempts to reframe dyslexia positively as a means for them to present a positive view of dyslexia to themselves. This allows them to construct a sense of self and parenting habitus, based around ‘positive dyslexia’. When parents conceptualize dyslexia positively at the ‘individual level’, this positivity permeates their interactions at the ‘interactional level’ [11, 15].

5. Working with other people: parents’ interactions with other individuals

Parents’ interactions with others are underpinned by their conceptualization of dyslexia and their relationships with those connected to supporting their children. Here we explore parents’ interactions with professionals. The effects of dyslexia on parents and their interactions with their children are also explored, with reference to sibling and parent-child relationships.

5.1 Parents and young people

Dyslexia has a profound impact on parents and other members of the family alike. As noted in [42], views shared with young people about dyslexia may be negative. Young people’s self-esteem can be adversely affected by negative discourse, such that they are in need of positive messages about dyslexia. Hartwig [6] in a personal capacity notes the effect of not knowing about his son’s dyslexia, stating that his parenting would have improved markedly if he had known earlier. He states tension and friction within his household, and subsequent anxiety were rooted in difficulties that he and his wife had in supporting both their son and their other children. Ross [15] uncovered similar experiences, with parents describing problematic interactions with all of their children, as a result of one of their children having dyslexia. Relationships suffer and non-dyslexic children may resent their dyslexic siblings. Dyslexic children often need a larger proportion of their parents’ time for homework, extra money is spent on tuition and emotional labour is given to supporting their self-esteem [6, 15].

Positive reframing of dyslexia is a common strategy used by parents to support their children when discussing dyslexia with them [9, 15]. Where young people view dyslexia negatively and they are subject to poor academic expectations, positive reframing by parents aims to highlight young people’s strengths and potential. To do this, parents draw on their internal conceptualization of a ‘positive dyslexia’ so that they can present this to their children. Parents provide context, safe spaces and advice [42, 43] for their children, to support them in positively reframing their own dyslexia, to construct a positive sense of self and their potential. Thus, parents’ internal sense-making at the ‘institutional level’ serves to empower them in supporting their children via their exchanges at the ‘interactional level’.

5.2 Parents and professionals

Positive relationships best underpin meaningful interactions between parents and professionals [12, 15, 40]. Where parents can frame dyslexia positively, and are confident in their knowledge of its characteristics, schools take their views seriously, which resulted in improved provision for young people [15]. Norwich et al. [12] found that appropriate provision for children was secured, not based on knowledge or formal diagnosis, but based on interactions and interpersonal relationships. Their study found that personal input from an independent professional, who advocated with teachers on behalf of parents, at times positively influenced provision for young people. This is particularly the case where parents felt unequipped to engage with teachers in relation to provision for their children. In such instances, parents may procure support to facilitate engagement with their child’s school.

Lichtenstein [44] writes that in the United States, many parents feel unheard when raising concerns about their children’s dyslexic-tendencies. He found that parents regularly had to commission private diagnostic assessments for their children. This echoes [12, 40]. Parents’ understandings of their children’s needs served to empower them to bypass the state school system and seek a private assessment of need. In obtaining a private diagnosis for their children, parents’ hope is that they will be able to secure appropriate provision for their children. However, this may not be the case.

A common struggle experienced by parents is getting their children’s needs identified and recognized [15, 45]. Schools may be reluctant to formally label young people as ‘dyslexic’ [4] or unwilling/unable to commission a formal diagnostic needs assessment for them [12]. The underlying reasons for schools’ lack of capacity to identify need are varied and diverse. It may be that schools lack professional knowledge of dyslexia or that they view parents as overreacting to their children’s perceived difficulties [12, 40]. Where schools have not adequately identified need, Ferguson [5] suggests that parents should advocate for their children, requesting regular updates, feedback, and progress reports from schools. She recommends working with schools to ensure that they quantify progress and provide cross-curricular feedback. However, in practicality this may be difficulty.

Parent-partnership is a problematic framework for both parents and teachers to engage in. Within policy they are responsible for provision for young people and are framed as experts. However, within the same policy framework, parents are also experts whose views must be considered [14]. In engaging with professionals, parents have reported that their own professional background had provided useful tools. Ross [15] found that parents, who had worked within the field of education could better engage with teachers supporting their children. They felt that their views were taken seriously as they were familiar with the habitus of education, and could access the language and practice of the field. Key in engaging with the school was an understanding of the required habitus. This chimes with other work [40], which agrees that mutual understanding and compassion is necessary. However, they ‘flip’ the view that parents must undergo battle [7, 10] to secure support for their children. Instead they argue that the onus for ‘work’ should be on professionals, as ‘gatekeepers’ to resources [12, 40]. They argue that professionals should adapt their communication strategies so that parents feel able to approach them personally to engage in discussion around provision for their children. However, such adjustment is not always readily achievable during interactions between parents and professionals.

5.3 Interacting on a level

As noted above, there is often a disjoint between teachers and parents when discussing provision for young people with dyslexia. Parents may have significant knowledge of dyslexia and how to support their children, whereas teachers have less knowledge but are in the position of gatekeepers to resources for young people [10]. There is a tension between teachers and parents where visions for support and expectations around provision differ; teachers grant access and parents may feel powerless. Research asserts that teachers, schools, and other professionals should make allowances when working with parents to facilitate their participation in decision-making processes about provision for young people [12, 40]. While in theory this is an excellent and inclusive strategy, on the ground some parents do not find that professionals make concessions or are approachable [12, 15]. There are social, cultural, and power-based barriers which impede parents’ meaningful participation in decision-making processes at school.

Where parents had professional experiences working with teachers or as teachers themselves, it was often easier for them to discuss their children’s support with professionals [15]. This is echoed elsewhere [12, 13, 42]. Knowledge and experience build parents’ confidence, which can form part of an embodied habitus that aligns well with teacher’s professional habitus. Such an alignment of habitus facilitates positive interaction and reduces social distance between parents and professionals.

Where social distances are minimal and habitus is shared, power differentials are minimized. Bourdieu’s social project focusses on social relationships with a field, noting that those in an advantageous position will act to maintain their power. Those who are disadvantaged usually do not challenge power structures. However, within the field of education, parents with knowledge of dyslexia and policy frameworks have increased confidence and feel able to engage with teachers (in advantageous, gatekeeper positions). They feel better able to challenge decisions relating to their children, whether through their own actions, or with the support of legal counsel. Such engagement and challenge demonstrate parents’ newly embodied habitus, initiated by their own internal sense-making of dyslexia at the ‘individual level’ [15]. This capacity to challenge individuals through social exchanges lays foundations for parents to act to challenge systemic barriers to participation and the roles embodied by individuals and institutions.

6. Engaging with the system

As parental confidence to engage with professionals increases, their capacity to challenge systemic barriers to participation in decision-making processes around support for their children improves. However not all parents are able to engage meaningfully. Within a Bourdieusian framework this is largely due to external structures which act to constrain them, impede their own free-agency and inculcating them to act in certain ways. Here, systemic structures are discussed and parents’ positions within these are highlighted, with reference to power differentials between them and professionals. These differentials act to facilitate or impede meaningful, collaboration between parents and professional to support young people with dyslexia.

6.1 Parental roles in policy

Traditionally, parents have represented their children’s views within policy frameworks [36]. Although within [32], and the 0–25 SEND Code of Practice [14], young people’s views are sought, it is expected that parents/carers actively engage with educational settings in decision-making processes relating to provision and support for their children. Early 21st-century, policy reviews [12, 41] found that policy frameworks were inadequately supporting parental engagement, with resources inequitably allocated and young peoples’ needs not met. Current policy frameworks were piloted under the Coalition Government, beginning in 2011 [46]. The aim of the revised policy frameworks was to facilitate parental engagement, remove unnecessary bureaucracy and streamline provision for young people with SEND. However, governmental evaluations of this framework found that parental engagement was not substantially improved [16]. Power imbalances, lack of transparency and inaccessible processes which impede parental participation remained within renewed policy structures.

Bourdieu [25] argues within his sociological project that dominant groups within a social field act to propagate their own advantageous position. The practices of a field and their associated habitus are constructed by dominant groups and then re-constructed through their continued (re-)embodiment by social agents within the field. Thus, within the field of education, while nominally, the role of parents within decision-making processes has been bolstered by new legislation, in practice parents feel that there is little difference. Parents felt disempowered [12], as do parents under current policy [15, 16]. They are still constrained by oppressive structures unless they experience a ‘dialectical confrontation’ [28], where their habitus is modified, facilitating their capacity to engage with professionals.

What parental engagement looks like and how their habitus modifies varies from individual to individual. Some parents commission external support and representation to facilitate their engagement with schools; they ‘hire’ knowledge and those who embody the habitus needed to access resources for their children [9, 15]. Other parents can engage in the role of ‘active participants’ without external support. They can embody knowledge of dyslexia, habitus and practice needed to secure resources within the field of education at institutional level. This is often connected to their professional or educational background [15]. Where parents embody the role of ‘active participant’ in their children’s education, their habitus is such that they can enact agency, engage meaningfully with policy processes and potentially challenge dominant power structures. Where this is the case, the role of teachers and other professionals is questioned. This causes tension within the ‘self-propagating structures’ [27] constructed by and within institutions, risking loss of their advantageous position.

6.2 Other roles in policy

Bourdieusian sociology argues that teachers occupy a privileged position within policy and legal frameworks. Their position is that of state appointed ‘gatekeeper’ to resources and support, acting as intermediary between the school institution and parents [26, 29]. Where young people have dyslexia and other SEND, the SENCo in a school is the holder of resources, budget and staffing to provide support for them [14]. Others [10, 41] have also located teachers as keyholders to resources, whose positions make them inaccessible to some parents. This is particularly important to note, given that [12] found schools and professionals’ accessibility and inclusivity lacking. Rose [24] highlighted similar issues, as did the 2010 Coalition Government [47]. Then, under a revised policy framework, further studies found that parents continued to be systemically impeded from meaningfully engaging in decision-making processes about their children’s provision [10, 15].

The lack of ‘movement’ and adaptation within the field of education demonstrates the accuracy of Bourdieu’s [25, 27] view that education is a site where a status quo is maintained, and self-propagating power-structures are in place. ‘Levels of interaction’ [1] support analysis of parental experiences within current frameworks and comparison with studies undertaken in previous policy-contexts. Through this, we can see that despite internal sense-making at the individual level, positive engagement with professionals at the ‘interactional level’. The role of parent is nominally bolstered within the Children and Families Act [32] and the most recent SEND Code of Practice [14]. However, the reality, for many parents whose social position precludes them from being able to embody the necessary habitus at the interactional level, is that their children’s needs are inadequately met. Institutionally, structures exist such that parents cannot embody their institutionally ‘expected’ role and challenge the provision for their children, or the systems that implement it.

7. The habitus of education: parenting-dyslexia embodied

Jenkins’ [1] ‘orders of interaction’ allow us to delineate parents’ individual sense-making of their children’s dyslexia. Making sense of dyslexia, then reframing it positively through exposure to new knowledge and practice relating to dyslexia exposes parents to a new habitus of parenting. This new way of parenting incorporates dyslexia, and its associated challenges and strengths. A new habitus, may develop through the ‘dialectical confrontation’ [28] which occurs when families discover that a child has dyslexia. This creates space for parents to focus on dyslexia as the reason for their children’s difficulties in learning at school. The ‘space’ created for dyslexia as root-cause of difficulties modifies parents’ previous understandings for their children’s difficulties, such as poor focus, laziness or poor academic potential. Where parents can make the shift to positively reframe their understanding of their children’s dyslexia and educational difficulties, their capacity to present a ‘positive dyslexia’ to their children and others is supported at the ‘interactional level.’

Interactionally, parents often found it challenging to interact with professionals, despite both professionals and parents (and policy) believing that positive interactions and partnership were key elements of effective intervention and support for young people. Where interaction was positive, parents’ professional and educational backgrounds underpin it. They may have common experiences and understanding of the field of education; parents embody the habitus of the field and social distance between parents and teachers is reduced. Where parents do not operate within the field of education, but interactions are productive and meaningful their professional or personal experiences are such that social distance between them and professionals is minimal. Minimal social distance leads to compatible habitus, facilitating engagement between agents.

Where parental habitus does not align with that of education, but interactions are positive, professionals’ personal attributes and concessions act to bridge social distances between individuals. This facilitates engagement and leads to better, more meaningful interactions. However, this was not always the case and some parents found that interpersonal interactions were not productive. Through their modified habitus, they knew their rights, but could not enact their agency without external support. Instead the modified individual, internal habitus of these parents empowered them to seek representation or advocacy to facilitate their involvement in decision-making processes relating to their children’s educational provision. However not all parents can commission such support; structural barriers exist which make it impossible for them to do so.

Institutional barriers acted to maintain the social position of parents, despite nominal legislative changes which sought parents’ views relating to their children’s educational provision. The role of parents within policy is to play an active role in decision making, but roles of teachers and other professionals as ‘gatekeepers’ to labels and resources can limit parents’ capacity to participate. Where parents could not engage meaningfully with schools, professionals and other institutions, their role of ‘parenting dyslexic child’ at times became overwhelming and they, “just wanted to be a parent but found themselves performing additional roles” [9]. Parents often required support to access language, practice and other habitus linked to institutions within fields, despite the onus for facilitating inclusion lying with schools in policy [14]. This suggests that fundamental change of the system is required so that roles within policy do not create barriers which agents cannot overcome interactionally, despite experiencing significant habitus modification through dialectical confrontation individually.

While there is relatively little work documenting parental experiences of supporting their children with dyslexia through education, the extant work shares common themes. Parents feel constrained and often frustrated by processes. There is relatively little work currently published using ‘orders of interaction’ [1] to support Bourdieusian analysis of lived experiences. However, the framework shows great promise at highlighting where barriers to participation and engagement exist for parents whose children have dyslexia. Knowing at what level barriers exist means support to overcome barriers can be implemented, and to ultimately ensure that dyslexic young people can access appropriate support.

8. Conclusions: supporting a child with dyslexia: who, what, when and how

In this chapter, we have seen how’orders of interaction’ [1] effectively underpin a Bourdieusian analysis of how parents experience support systems for their children with dyslexia. The theoretical framework developed in this chapter allows for a clear delineation at each level of who, what, when and how different interactions support or impede parental involvement and effective support for young people. Concluding remarks here give a brief overview of practical implications uncovered by this theoretical framework in exploration of parental experiences off dyslexia support. These recommendations are relevant for parents, but also for practitioners and policy makers.

8.1 Who and what

Individually, parents need access to robust knowledge of strengths associated with dyslexia. This knowledge empowers them to empower their children through positive, inclusive understandings of dyslexia. Practitioners and other professionals, interactionally must ensure that they act to facilitate parental participation in decision-making about provision for young people. Where they do, and parents are actively included, power differentials and associated structures shift. This then leads to changes in habitus, and systemic practice. Changes in systemic practice lead to institutional transformations, which develop real capacity for parents’ empowerment and meaningful participation in their children’s education.

8.2 When

Individually, parents’ need for robust knowledge of dyslexia and support interventions tends to accompany their child’s ‘diagnosis’ of dyslexia. However, prior to this, many parents also seek information around their children’s difficulties with learning. Prior to diagnosis, professionals may dismiss parental concerns and following diagnosis, visions for support interventions may differ. At all times, the onus of ‘inclusivity’ is on professionals within the current policy-framework in England. They “must ensure that children, young people and parents are provided with the information, advice and support necessary to enable them to participate in discussions and decisions about their support” [14]. This should be an on-going process, so that parents are continually supported to actively participate in decisions around their children’s provision.

8.3 How

In research, various methods have been suggested to facilitate parental participation in decision-making and securing of appropriate support for their children:

• Peer support groups for parents to share experiences [42]

• Therapeutic groups for parents [48]

• Independent support and advice for parents [12]

• Advocacy and representation to liaise between parents and settings [12, 49]

• Policy-makers and legislators must be amenable to interactions with parents, acting to ensure they are inclusive in their practice, and that institutional structures do not create barriers to participation [12, 49].

• Access to resources should not be contingent on parental means; assessment for and diagnosis of dyslexia should be undertaken in a timely fashion within the state-education system [12].

While this chapter largely focuses on provision withing the English system, there are transferable principles that apply elsewhere. Material within this piece is taken from various legislative and policy settings, which demonstrates the strength of the theoretical framework in delineating parents’ experiences and highlighting barriers to their participation in their children’s education. However, further work using this framework is necessary to gain deeper insight into how parents can support young people with dyslexia.

Acknowledgments

No funding has been granted to support this project.

Conflict of interest

The author declares no conflict of interest.

Notes/Thanks/Other declarations

I would like to thank Dr. Tina Skinner at the University of Bath, UK, for her encouragement in pursuing further study of dyslexia and neurodiversity.

I would like to thank Dr. David Skidmore at the University of Bath for his guidance and support during and following my PhD.

I would like to thank John Hicks, Parenting and Neurodiversity Coach at Parenting Dyslexia for supporting me as we worked on together to gather, process and analysis responses from parents, about their experiences supporting their dyslexic children.