Caring for a child with a disability is expensive. Although an old study, according to Newacheck and McManus (1988), costs involved in raising children with disabilities were two to three times more than those for raising able-bodied children. Furthermore, families in low-income settings have great difficulty in affording the costs of raising a child with a disability, and these costs take up 12% of family income (Leonard et al. 1992; Thrush & Hyder 2014). All participants report expensive disability-related treatment for their children, including surgeries, medications and therapies. In addition to paying for services, participants must travel far to appointments highlighting the lack of and difficulty in accessing resources. As it is too expensive to begin or sustain these, five participants have stopped taking their children for treatments, and others report that their children are on long waiting lists for services:

Ten participants’ children do not have medical insurance, which forces many of the mothers to rely on free or low-cost public healthcare. Participants describe the challenges they face in this context, including lengthy wait times, a lack of follow-up care and a general lack of resources and specialists at their disposal. Moreover, participants whose children are on medical aid relay that not all expenses are covered because their children’s treatment is continuous:

Arguably, being a single mother of a child with a disability presents particular financial stressors.

Compared to families with able-bodied children, children with disabilities and their families are substantially more likely to live in poverty (Shahtahmasebi et al. 2010). The connection between poverty and disability is a significant source of stress for single mothers:

Mothers of children with a disability endure a gruelling array of difficulties in caring for their children’s continuing and, at times, overwhelming needs. They have to take on the roles of caregiver, case manager and advocate for their children while navigating a variety of bureaucracies to secure the resources their children need (Parish et al. 2005). Only two mothers receive financial assistance from the fathers of their children, albeit inconsistently. Furthermore, the South African Government Child Disability Grant¹ is reported to be limited:

Given the high costs associated with providing care for children with disabilities, parental employment is essential (Lichter 1997). Factors related to the severity or instability of the child’s disability are strong predictors of reduced hours or cessation of maternal employment (Leiter 2007). Mothers, in particular, do not continue with typical employment trajectories when their children have a disability, and this can have a considerably damaging effect on their family’s financial stability. Eight of the participants here are unemployed, stating that their children’s daily needs prevent them from being able to work full time. Mothers’ abilities to work are hindered by the time commitment required to care for a child with disabilities, as well as a shortage of accessible, affordable childcare (Cuskelly, Pulman & Hayes 1998). Another study found that mothers of children with profound disabilities experience considerable difficulties related to their caregiving responsibilities, including the need to work reduced hours, take leave and switch employment (Shearn & Todd 2001). Similar findings are evident here:

Finding childcare is a major factor in maternal employment. Concerning childcare for children with disabilities in SA, very little is known. Participants rely on family members and others to help take care of their children; yet, some mothers feel they cannot ‘burden’ these others which prevents many from working:

Busisiwe made the difficult decision to place her child in a permanent care facility so as to maintain her employment, while others decided to enrol their children in school. However, participants worry about how challenging it is to find suitable and inexpensive education and childcare options:

Children with disabilities have continuous demands for specialty care in order to maintain their functioning and health (Perrin 2002). It can be challenging for single mothers to balance the demands of their jobs with the needs of their children. Arguably, participants are left in a paradoxical scenario between choosing to care for their children or being able to support them financially. As a result, many single mothers are forced to rely on government grants and other forms of financial aid that are scarce and insufficient to cover their children’s basic needs.

Raising a child with a disability causes significant life disruptions, increased levels of distress and marital tension (Sadiki 2023). Unlike the African proverb ‘it takes a village’ to raise a child, the single mothers in this study are largely isolated in their mothering of their children with a disability. The requirement for comprehensive home healthcare and the need for respite are significant when raising a child with a disability, having an adverse effect on parents’ mental and physical health, eliciting feelings of shame, guilt or low self-esteem and drawing the focus away from other aspects of family functioning. All of these stressors can have an impact on the parents’ relationship (Reichman, Corman & Noonan 2008). Parents of children with disabilities are substantially more likely to be separated compared to their counterparts who are raising able-bodied children (McCoyd, Akincigil & Paek 2010). Additionally, having a child with a profound disability increases the likelihood of a separation between the parents, resulting in mothers being left alone to care for their children (Pelchat et al. 2003). According to Pelchat and colleagues, mothers find it difficult to adjust to the needs and demands of their children with a disability, whereas fathers have difficulty adapting to the actual disability. Many participants in this study believe that their partner’s inability to cope with their child’s disability led to their separation. Arguably, the participants’ partners fled when confronted with the knowledge that their children have a disability; the majority of separations occurred during early childhood, when the child’s disability was first diagnosed, and parents were navigating their initial feelings about the disability:

Eleven participants became single mothers after giving birth to their children with a disability. These results are consistent with those of a European study by Di Giulio, Philipov and Jaschinski (2014), which found 91% of their sample separated after the birth of a child with a disability. The single mothers in this study seem to have a range of emotions to the separation from their child’s father. They all feel abandoned. The belief that their child’s disability was the main factor contributing to their separation brings feelings of bitterness, anger and resentment. The fact is that their partner left an undesirable situation while they could not also elicit these various maternal emotions, including disappointment over the loss of a father figure for their children. As mothers, they do not share the same ‘privilege’ of being able to abandon their children with disabilities.

One of the social ills that SA as a country is currently facing is the status of fathers’ absenteeism and their minimal involvement in the lives of their children (Makusha & Ritcher 2015). According to Richter, Chikovore and Makusha (2010), SA has the second-highest prevalence of father absence, the lowest rate of paternal maintenance for children and the greatest rate of child neglect in the world. Gould and Ward (2015) found that 50% of South African children grow up in homes without their fathers. Families with a child with a disability are particularly vulnerable because there is a considerable danger that fathers reject the child with a disability (Zuurmond et al. 2016). There is compelling evidence that having a father in the home promotes children’s growth, well-being and family functioning (Tracy et al. 2019). Consequently, mothers suffer significant challenges as they are left behind to raise their children by themselves.

Furthermore, only two participants report that their children’s father maintains some level of financial involvement, albeit minimal, in their children’s lives. Thus, most of the participants are left to shoulder the full financial concerns relating to the care of their children, while also being the sole caregiver:

Fathers are more inclined to disregard their parental responsibilities when their child has a disability because of the stigma and discrimination that accompany it (Pelchat et al. 2003). Furthermore, fathers of children with disabilities appear to associate the mother with the disability too, thus also rejecting her and leaving her to raise their child alone.

Most of the mothers in the study report that they can to various degrees rely on their own family members to help take care of their children:

However, some mothers find it difficult to rely on family assistance based on the profoundness of their child’s disability, leaving the single mother largely alone: ‘… they [family] say he’s heavy. So they can’t even carry him around … they can’t bath him …’ (Anna, female, single).

Other participants share conflicting responses from their relatives; from taking time to support her to receiving negative feedback regarding her child’s disability, leaving her feeling rejected and alone:

Ferguson (2002) contends that the sociohistorical environment is inextricably bound up with how a family responds to having a child with a disability. A family’s perception of what it means to be disabled reflects the larger framework of social attitudes and historical circumstances from which that interpretation originates. In the past, many South African tribes viewed disability as a curse from the gods and an omen of doom resulting in harsh, even deadly treatment of the child (Mdziniso 2001; Shabalala 2000). As the mother is the child’s primary carer, this assault and rejection are also directly reflected onto her, making her the target of prejudice and isolation:

Some participants’ families considered alternative explanations, such as them being cursed or that the paternal ancestors had not acknowledged their child, to try to understand why their children have a disability. This brings to light the underlying cultural assumptions and prejudices that prevent families from accepting both the mother and the child with a disability.

According to Goffman (2009), stigma not only impacts the experiences of individuals who hold the stigmatising attribute but also has a propensity to spread to those associated with the individual who holds the negative difference associated with the stigma. Hence, mothers of children with a disability can experience courtesy stigma; their status in society is primarily defined through their children’s disability. The paternal family often believe the mother is responsible for the child and blame her for the child’s disability (Sousa 2011). While the majority of the participants’ ex-partners rejected them and their children after the birth, so too did the paternal families: ‘… no one is involved … there’s no one willing to be involved in her life …’ (Busisiwe, female, single).

‘As a parent you need to be like pushing systems to work with you … you need to advocate for him … You need to fight for him to get what he deserves’. Sibongile, a single female, illustrates the additional responsibility single mothers have while raising a child with a disability, which entails contending for their children’s care within the systems of care. Mothering goes beyond only providing for the needs of their child and includes advocating for their child (Scott 2010). According to this study’s findings, raising a child with a disability can be physically taxing, expensive and time-consuming. These factors are heightened by a poorly co-ordinated and frequently unresponsive system of service delivery and the fact that single mothers raising a child with a disability also spend a significant amount of time, energy and money on advocacy and other activities.

Notably, not all the mothers encounter hostility from medical professionals and thus do not feel the need to advocate for their children. Many participants have positive experiences in healthcare settings to report, making a significant difference in their ability to care for their children:

Professionals who work with single mothers of children with a disability need to establish a foundation of openness, trust and respect. This openness is crucial to support the single mother and help her care for her child despite her many challenges. O’Connell et al. (2013:7) found the value of mothers feeling heard by medical professionals and having others concur that their children could be challenging at times and that they too become stressed. These acknowledgements give mothers the experience of no longer feeling ‘invisible and alone’. This underscores how crucial psychosocial assistance is within the healthcare system:

Some of the participants saw their participation in the interviews in the study as an opportunity to not only speak out on behalf of their children but also share their struggles with other single mothers who had not yet accepted their own child’s disability. Johanna, a single female, mentions that she has helped organise events for parents of children with disabilities. She cites the need for psychosocial assistance among single mothers: ‘there are a lot of people who are still in denial about their children’s problems, therefore we are trying to gather as much as we can so that we can support one other’.

The majority of participants engage in support groups with other mothers of children with disabilities. They speak favourably of the effects of these interactions, stating that it is crucial to have a space where they can be honest about their everyday struggles, particularly at those times when managing their child with a disability was challenging, without fear of being judged:

Eight participants seem to have reached a point of some level of acceptance with regard to their children’s disability. Included in these are an admission of change since the diagnosis, a claim of moving on with life, a suspension of the quest to learn the cause of their child’s disability, an accurate portrayal of their child’s abilities and a balance of claims regarding the benefits of raising a child with this disability:

Sibongile seems to suggest that something about the severity of her child’s disability may also play a role in how mothers come to accept their child’s disability. Furthermore, Barnett et al. (2006) found that mothers with the stressors of lower socio-economic positions and/or who identify as minorities, the majority of mothers in SA, have a higher likelihood of being unresolved about their child’s disability diagnosis. The following extract shows how when asked about their early reactions, at least five mothers mentioned financial worries and a lack of awareness about available resources, which made the diagnosis even more confusing and overwhelming:

Mothers who have found some resolution with their child’s disability report higher social support and less stress in motherhood compared to mothers with unresolved feelings (Sheeran, Marvin & Pianta 1997). Additionally, Sheeran found that mothers who appear to have advanced in the grieving process related to the trauma of finding out their child’s diagnosis (Harvey 2015) reported that the support they received from other parents, friends and groups to be more helpful than did the group of mothers who were unresolved about their child’s disability. Furthermore, mothers revealed that family support was their preferred coping strategy in the study by Koydemir and Tosun (2009). This was demonstrated in this study, where seven participants state that they relied on their family for assistance when they first learned of their child’s diagnosis. Lindiwe, a single female, explains that she had been so overwhelmed and saddened by the diagnosis to the point that her mother took her child and raised him until she came to terms with his disability: ‘I was in denial and couldn’t understand why my son wasn’t normal. It was very hard for me to understand that and come to terms with it’. And Tebogo:

In the study by Koydemir and Tosun (2009), mothers claimed that they eventually became accustomed to the circumstances and started to feel more optimistic about their child’s disability. A significant turning point for many of this study’s participants appears to have occurred when they gained more knowledge about their child’s prognosis and clarity about what their child could do and what their demands would be. Evidently, mothers of children with disabilities need to be given reliable information that they can utilise to comprehend their child’s disability and assist their child (Koydemir and Tosun 2009). This is essential in helping mothers accept their child’s disability; it also helps to improve mother–child relationships and gives mothers more capacity to care for their children.

The reactions of shock, frustration and grief to the initial diagnosis of disability in one’s child are often the beginning of the experience of stress for mothers of children with disabilities (Ferguson 2002; Harvey 2015). Following the mothers’ first reactions, they make an effort to comprehend and assess the situation and determine the meaning of the diagnosis in a medical and social context (Lalvani 2008), which can feel both overwhelming and empowering:

Most mothers first receive answers to questions about the nature of their child’s disability from doctors, whose explanations, based on the medical model of disability, are often concentrated on the health issues that frequently accompany the diagnosis (Lalvani 2008). However, research by Lalvani revealed that mothers of children with Down’s syndrome are more interested in the social significance of their child’s diagnosis than the medical one. Following the diagnosis of the participants’ children, many mothers worried about the social effects of disability and issues related to what constitutes ‘normalcy’. Arguably, the mothers display fear brought on by not knowing what to anticipate. Sibongile explains:

Koydemir and Tosun (2009) explored Turkish mothers’ experiences in raising a child with autism spectrum disorder (ASD). It was discovered that most of the mothers lack accurate knowledge about their child’s disability. These findings are consistent with those of this study, where only nine of the mothers are able to name the disability of their children, and only half of the mothers can articulate their children’s symptoms, demonstrating the knowledge gaps within some mothers. Some mothers, like Anna, can speak confidently about the details of their child’s disability: ‘… now I can sit with someone and explain my child’s condition as if I’m a doctor …’, while Zanele is still confused about her child’s disability: ‘… I am not sure what disability he has … They’ve explained to me that this is how he’ll be his whole life …’

Arguably, some of the mothers feel misinformed because they lack knowledge resources because of limitations in the healthcare system:

When Elizabeth was asked about what help she wished she had access to, she responded:

The difficulty in accessing healthcare and educational systems was identified by Woodgate, Ateah and Secco (2008) as the most worrisome element contributing to parents’ feelings of helplessness and isolation. Manifestations of the inaccessible system include: delaing with professionals who appear to lack specific disability training and knowledge; limited, inadequate and inappropriate resources deemed necessary in order to provide support for raising a child with a disability. Professionals working with children with disabilities need to consider mothers’ feelings, needs and how intimately intertwined their lives are with their children (Doody 2012). It is beneficial for professionals to be especially considerate with mothers and help them fully understand their child’s diagnosis, not only from a medical standpoint but to also provide additional support while they make sense of their child’s diagnosis and their life adjustments as mothers to children with disabilities.

However, the results of this study suggest that not all mothers are receptive to learning about their child’s disability. Not knowing may be a maternal psychological defence mechanism against understanding the demands and challenges their children and themselves face, which can feel unbearable. Lindiwe, in particular, reveals her anxiety about her child’s prognosis and coming to terms with her life changes and expectations of her as the primary caregiver, which was too much to bear. Instead, she remains uninformed and thus able to avoid having to come to terms with what feels like a terrifying reality: ‘… honestly they probably have [informed her about her child’s diagnosis] but I have been in denial for years. I was refusing to hear anything they would say at the hospital’.

Contrastingly, several mothers gushed about their understanding of their child’s disability and how over time they had mastered the healthcare system. Maria discussed how she has relied on the knowledge healthcare workers have given her and has supplemented this with her own research to better understand her child and manage her everyday activities. Becoming informed seems to have been a way to feel more in control after the initial shock of learning of their child’s disability.

Up to now, this study has largely focused on the challenges faced by single mothers of disabled children. However, participants also demonstrate great resilience – the capacity to survive hardship and emerge stronger from it (Heiman 2002):

According to Heiman (2002:169), parents raising a child with a disability stress the importance of welcoming their child with a disability, who ‘has the right to live like our other children’, objectively evaluating the situation and attempting to find workable solutions. In this study, Johanna shares how she hosts informative events for parents with children with disabilities, displaying resilience and using her resolve to help herself and other mothers: ‘I really wish to encourage parents of children with disability to … start accepting and taking their children to get help’. Furthermore, Zanele reflects: ‘I don’t want people to say ‘shame’ on me … You have to hold your head high and be proud to be parenting a special child’.

In one way or another, all of the participants have benefited from a variety of support, including extended familial, medical, educational and informal. According to Heiman (2012), informed resilience is demonstrated through asking for help and by taking meaningful action to address one’s circumstances: ‘It’s just very overwhelming to do it on your own … I can’t imagine what people without support uhm how they do it …’ (Maria, female, single)