Society’s perceptions of disability have changed significantly over the past the century. Initially having a child with an intellectual disability was viewed as a tragedy of enormous proportion and professionals portrayed the impact on the family in extremely negative terms (Blacher and Baker 2002). Indeed, some professionals took the view that parents needed as much ‘fixing’ as the child did. Supports were not available to families and the only strong advice they received was to place their child in special care.
Thankfully, our understanding and perception of disability have changed and the social model of disability enables people with disabilities to look at themselves in a more positive way, which increases their self-esteem and independence. In addition, it puts the onus on society—that disability is a social construct and that how we organise things in our culture limits and restricts what some of its members can do. This is turn affects the language we use. For example, we say that John has autism, rather than that John is autistic. Now we can see the person rather than just their condition.
Psychologists play an important role in diagnosing a learning disability, but also in supporting parents on their progress towards successful adaptation of the diagnosis and advocating for their child. Coming to terms with a child’s disability is a personal and unique journey for every family, but also one with common themes. It is usual for the family to grieve the loss of the ‘normal’ child, while at the same time having to come to terms with disability both practically and emotionally (Jacques 2003).
The belief that parents of children with disabilities pass through a number of stages of adjustment/adaptation has been in existence for quite some time (Kubler.Ross 1969), but now researchers question the validity of these stages and also their usefulness when working with families (Eden.Piercy et al. 1986). There are several versions of the stages in the literature; in general they include the following:
- a period of shock and denial
- some form of emotional disorganisation such as guilt/shame/anger
- emotional organisation – acceptance/adaptation.
The research suggests variability within these stages and the fact that parents may recycle through these stages as they and their child enter different periods of the lifespan (Blacher 1994).
Within this stage model there is a significant degree of negativity which has been criticised by researchers (Roll-Patterson 2001). In particular, the stage of denial is portrayed negatively and is only viewed in a positive light as serving as a coping mechanism, giving parents time to adjust to their child’s disability (Marshak and Seligman 1993). Furthermore, the stage model of adjustment views parents/families from a deficit perspective—skill deficits in the child and parents’ lack of resources. Parents’ lack of resources is viewed in terms of limitations in motivation and ingenuity, rather than deficiencies or deficits in service delivery. Researchers now argue for a collaborative.resource perspective that would empower parents to advocate for their child and an acceptance of the child and his/her condition (Ho and Keiley 2003).
Most families show a high level of resilience, even while they experience significant emotional pain and stress. However, resources (both within the family and from outside agencies) can support healthy adaptation. In addition, feelings of isolation can exist for parents while dealing with a child’s disability and this is often amplified for those living in rural areas where access to transport and services is often restricted. Professionals working with parents—in particular, psychologists—are best placed to understand the needs of these families and to provide appropriate support and understanding. When developing strategies to move parents more readily towards acceptance of their child’s learning disability, it is important to respect cultural differences between the majority culture and the parents’ own beliefs, values and expectation for their child (Wolman et al. 1994).
Psychologists now realise that although parents may encounter daily strains and caregiver burdens, there are also positive contributions that a child makes to the family Turnbull et al. 1993). There are instruments available to professionals that directly assess the positive impact of a child with a learning disability on the family and the need to make a conscious effort to include this perspective in their assessment (Donenberg and Baker 1993). Parents can often view the child as a source of personal growth, maturity, happiness, fulfilment, or family closeness (Hastings et al. 2002). Indeed, some parents express positive perceptions for their families’ future (Taunt and Hastings 2002).
When examining parental coping, particularly in relation to the type of support to be offered, it is important to consider the stage of the family lifecycle. Both children and parental needs change as they grow older and the types of supports required will vary accordingly. It is essential that professionals determine what kind of resources/supports will best meet the needs of families with a child with an intellectual disability. The provision of these supports is probably the biggest single influence on enhancing the positive impact of having a child with an intellectual disability and the better adaptation/adjustment and coping skills of the parents.
In order to provide effective support to families, psychologists and other professionals need to be sensitive to a number of issues that impact on the child and family adaptation. Most notably this includes the understanding that development occurs within a context and the child is part of a system that is embedded in a culture. Two of the most commonly cited needs of families with children with intellectual disabilities are a need for information about developmental issues and the need for strategies for interacting with and teaching children (Romer et al. 2002). Parent training is a way to address these needs in a sensitive and professional manner. In addition, clinicians can also address specific issues that may interfere with family adjustment and with consistent implementation of parenting skills, such as parental depression, social isolation, marital difficulties and high stress levels (Blacher et al. 1997; Helitzer et al. 2002; Baker et al. 2003).
Psychologists also have a role in developing parent-child connections through enhancing the parents’ ability to be sensitive and responsive to their child’s needs, and educating the parents about appropriate developmental expectations. They also encourage parents’ acknowledgement of their child’s positive behaviours and target specific beliefs or attitudes that may interfere with positive parent-child relationships.
Psychologists aid parents’ ability to advocate for their child and to help them to communicate effectively about their child’s needs, strengths and vulnerabilities. Children with intellectual disabilities require multidisciplinary services and communication and coordination are required among services.
In providing effective support for families of a child with a learning disability, psychologists need to be sensitive to the conventional needs—such as behaviour management skills, social support, respite, etc.—as well as the individualised need of a particular family.
How parents react to their child’s learning disability, and what resources and supports they receive during the early years, have an enormous influence on the course of their adjustment. Different needs and different supports will be required depending on many factors such as age, ethnicity, education, martial status etc. Yet there are many similarities in what families find supportive and how professionals can assist families in their journey with their child.
Research in this area suggests that the more sensitive and responsive professionals are to parents and service needs, with supports that are accessible and targeted, the more positive outcome there will be for the child and family. Psychologists are rightly placed to influence this process and to develop positive parent-child interactions that enhance a parents’ ability to advocate for their child and to access the appropriate support services that they require.