Abstract
The challenges of being a mother in the united states can be great and are often only heightened for women raising children with disabilities. interviews with mothers not only confirmed this reality, but also revealed ways that such mothers grow, adapt, find joy, and demonstrate resilience on their long journeys of raising their children over many decades.
By looking at womens’ lives across social contexts, we learn more about the rewards that may balance the strains they experience and gradually coalesce into a narrative of resilience.
iStock Photo // kali9
In our conversations with mothers raising children with disabilities into adulthood we heard a great deal about stress, challenge, and hardship, and women often cried as they reflected on their long journeys of motherhood. While they usually led with the hard parts, in time these conversations shifted to something more hopeful, or at least more complicated, especially when we asked them about their lives—and the world—more generally. One mother, Martina, told us that learning to “celebrate the little things” her now-adult son with autism had achieved gradually made her rethink the pressures that society puts on mothers like herself. Another mother, Teresa, described how she eventually felt empowered to help others with the “experiential expertise” she had developed raising a child with a physical disability over two decades. They were sending us a message: They face darkness but also can find the light, slowly but surely, by opening themselves up to the world.
The parents of children with disabilities experience significant challenges that are compounded when, like Martina and Teresa, they live in the United States, a neoliberal society where structural ableism makes the hard parts of parenting seem like the fault of the parent (or even the child) rather than the entire social system itself. And since Americans tend to view family responsibilities through the lens of gender, mothers are the primary targets for this blame.
Reflecting these structural and cultural challenges, studies of mothers of children with disabilities in the United States—mostly in psychology, social work, medicine, and public health—tend to highlight the risks they face. This research often portrays these families as distanced from the larger world and disconnected from broader social, political, and economic systems. As our experiences with Martina and Teresa attest, however, we aimed for a fuller and more multi-dimensional portrait in our mixed-methods project. Taking particular guidance from the work of Brown sociologist Dennis Hogan, who calls for a more sociological approach to families of children with disabilities, we approached motherhood from several different angles: as a lifelong career, as an evolving mix of highs and lows, and from a critical standpoint that challenges the notion that women’s lives can be sufficiently defined by their families alone.
Following these alternative ways of understanding mothers of children with disabilities, we considered how the experience of mothering evolves as women age into later life, what they learn along the way, and how motherhood intersects with other social contexts along that journey. Doing so illuminated two insights. First, we found that mothers’ resilience emerges over time through social experiences and cannot be captured by a single moment. Second, we discovered that these mothers’ social experiences involve actively engaging with the world and therefore cannot be captured solely by their receipt of social support. Thinking sociologically in these ways enabled us to hear what mothers like Martina and Teresa were trying to tell us. Yes, their lives could be hard at times, but not all the time. Yes, their experiences of motherhood are core to their identity, but these experiences are not the entirety of their identity. Yes, their families may be the central organizing force in their lives, but they are not the only context in which they live.
focusing on young mothers raising children with disabilities in the united states
We have seen a rise in the reported number of U.S. children with disabilities or chronic conditions in recent decades. This trend reflects increased awareness and better diagnostics, along with other factors. For example, the Centers for Disease Control and Prevention reported that about 1 in 31 children are now diagnosed with autism spectrum disorder, compared to 1 in 150 in the early 2000s. Additionally, medical advances have increased life expectancy for individuals with disabilities, tripling since the 1970s, for example, in the case of Down syndrome. Consequently, more mothers today raise children with disabilities in this country—and for longer—than before.
Historically, children with disabilities got the attention, but their mothers have gradually moved into the spotlight. Particularly in the past, research used theories of stress to study such mothers, documenting the risks to their health, marriages, and finances, and relaying their anxieties about their children and themselves. While not uniform—in fact, these studies’ findings often differed by disability and family circumstances, and occasionally reported positive effects—this literature generally emphasized these mothers’ difficulties, especially in a society that systematically stacks the cards against families. Consider this passage from a 2007 review in Maternal and Child Health by economist Nancy Reichman and colleagues: “Having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable childcare, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem.”
shifting the focus to older mothers of adult children with disabilities
For the most part, this research focused on younger children, meaning that it focused on younger mothers while keeping older mothers in the shadows. We know, however, that women do not stop mothering just because children “grow up,” especially when those children have disabilities that require extended care.
How might the well-cataloged risks of raising young children with disabilities apply to older mothers of adult children? Psychologists like Jieun Song and social work scholars like Marsha Seltzer have analyzed population data to answer this question. With some exceptions, their research reinforced these maternal risks—greater allostatic load, diminished cognitive functioning, and more depression. As Song and colleagues concluded in a 2016 article in the Journals of Gerontology, “These mothers often face more chronically stressful situations due to their children’s disabilities and need for care and support, and chronic stress has been found in past research to lead to memory decline . . . especially among older women.”
In 2023, we dove into this issue by analyzing U.S. survey data as well as interview data from Texas. Our statistical analyses revealed that health disadvantages among older mothers of adult children with disabilities, relative to other mothers, had grown over many years. In our interviews, they shared new hardships emerging in this stage of their lives. The story, therefore, seemed simple and perhaps unsurprising: As mothers get older, they may compare themselves to other mothers with children launching independent lives, and they often take on more carework (and costs) when their children age out of many services. As a result, their mothering burden can grow and become harder to bear.
Mothers enjoy a collective life—not despite their children, but because of them.
iStock Photo // Phynart Studio
Still, we wondered, was the story that simple? As sociologists, we like complicating things by looking for more complex patterns that could be hidden in something seemingly straightforward. Considering older mothers’ experiences within the long span of time of their mothering “careers” enabled us to identify resilience as an ongoing act of doing, something that developed over time.
mothers on a journey
Studying older mothers reveals certain facets of raising children with disabilities less visible among younger mothers. We learned about the growing specter of mothers’ own declines, the challenging new lifestyles that emerged when their adult children spent less time in school or formal programs, and their fears that mothering may only be for the young.
We also discovered that studying mothers at this stage could recast raising children with disabilities as part of a longer journey that emphasized rewards and resilience. Recall that our quantitative analyses revealed a growing health toll of having a child with a disability over many years. On closer inspection, the duration of time in this maternal role mattered less than experiencing it intermittently as their children’s symptoms and needs ebbed and flowed. This significance of accumulating shocks versus a more stable state suggested the possibility of gradual adaptation, as did evidence that their marriages grew less vulnerable as the onset of their children’s disabilities receded into the past.
When we asked mothers to consider where they were now in the context of decades of mothering, they told us that time and experience had given them something invaluable—the ability to learn, develop into the role, and feel a sense of betterment while the experience grew more predictable. It also gave them perspective. Looking back, they could take stock of their accomplishments and feel pride, which they wished they could share with their younger selves.
In these conversations, we also asked mothers about resilience. In their reflections, it had bubbled up here and there over many years before they could fully recognize it. They could not see it by comparing themselves to others, only to themselves.
The benefits of giving through social connections helped mothers gradually find meaning in their journeys. They reflected on their own pasts—what they hadn’t known, the help they’d needed—and saw they could guide other mothers starting that journey for the first time.
mothers and the communities they built
As many sociologists learn, the people we study often speak more like psychologists. The mothers we interviewed tended to keep the conversation inside themselves, or at least inside their homes. When we prompted them to consider the social rather than the psychological dimensions of their experiences, however, these conversations opened up to reveal more rewards of parenting. Specifically, mothers reflected on how resilience was something they had accomplished over time as they navigated the world, rather than a fixed element of their core identity.
Echoing other studies, we heard a lot about the community of families of children with disabilities. They were built by mothers who shared common ground and then found each other through social media, by volunteering for children’s activities, during medical appointments, or through parent groups organized by advocacy organizations. Theirs was a collective life—not despite their children, but because of them. This sense of community subsequently carried them through tough times. The communal ethos experienced among families of children with disabilities did not surprise us, nor did the support and assistance that mothers received from other families. Rather, we were struck by how important mothers found the social act of building community and engaging with it—this was the reward.
These mothers’ descriptions of their communities echoed classical sociological research on how informal networks compensate for missing formal services in economically disadvantaged neighborhoods. But in our work, only some of the mothers were disadvantaged; many others were well off. In fact, this role of community—whether in person or online—transcended traditional class boundaries.
The benefits of giving through social connections helped mothers gradually find meaning in their journeys. They reflected on their own pasts—what they hadn’t known, the help they’d needed—and saw they could guide other mothers starting that journey for the first time. Carmen, a middle-aged Latina mother reflecting on raising her now-adult son with autism, emphasized how she mentored other moms like her. She described sharing “articles, a lot of books, a lot of videos, because I want [them] to have the right mindset. There’s a lot of uncertainty . . . out there.”
Such rewards seemed all the more vivid when we talked to mothers without such a community, whether because they were too overwhelmed at home, felt shy or more withdrawn, experienced stigma or isolation, or lacked online options. They tended to suffer without opportunities to give and receive from others, and they had trouble seeing that their challenges did not reflect themselves or their children but something larger.
Other mothers went beyond these local networks to consider the larger community of mothers in the United States. Remember Martina? Like her, mothers often moved from stories about their children to ruminations about the cultural expectations of modern motherhood. They considered their own lives, revisited the prevailing norms of intensive mothering to which they had been subjected, assessed the disconnect between what they had done and were “supposed” to do, and forgave themselves for those disconnects. They felt more sympathy for all mothers struggling with impossible standards.
When Martina shared, “You learn to find joy in some very mundane, everyday type things because you have to. . . . We would celebrate those little things,” she expressed something about her own life but also a larger critique of society. Julie, a white mother of an adult son with muscular dystrophy, did the same: “We’re defining success differently than a lot of people. . . . Regular school success [like going to college] is not something my son could do.” While many mothers boast about their children’s college successes, Julie boasted about her son’s YouTube channel. Embracing her own life doubled as a rejection of the pressures facing American mothers writ large.
For some mothers, raising children with disabilities could be isolating. It shrank their worlds and made them look inward. Others looked backward and outward and saw that it was network-building and world-expanding.
The benefits of giving through social connections helped mothers gradually find meaning in their journeys.
iStock Photo // PeopleImages
mothers in the labor force
Social life also encompasses more concrete sets of institutions that mothers navigate daily. Consider the labor force, which historically has been inhospitable to mothers—especially when their children have disabilities—yet offers social, psychological, and financial benefits. We saw this tension in our data.
Our analyses replicated past research by showing that mothers of children with disabilities were less likely to work for pay at any point of their lives than other mothers. However, further scrutiny revealed better health outcomes among those mothers able to maintain steady employment despite the challenges of balancing work with raising children with disabilities into adulthood. Here’s the catch—they had to be consistently employed in occupations that offered more opportunities to feel connected and accomplished. Resources and skills developed as employees in the traditional labor force carried over to their caregiving roles as mothers.
Our interviews echoed this theme. Patty, a white attorney in her 60s who had an adult son with cerebral palsy (CP), used her professional experience to battle the byzantine system of social services that makes many mothers feel powerless. As an attorney, she “knew all the things that help you fight your way through [because] the system is not transparent.” Her growing sense of agency tangibly helped her son while also allowing her a fuller sense of self: “It let me be me rather than only [his] mom.”
Yet for every woman in our study empowered as a mother through her work, there seemed to be another empowered at work through her mothering. Consider Elena, a Latina mother who brought many years of experience raising a son with autism to her job as a case manager at a health agency, where she spotted “red flags” that made children eligible for early intervention. Others used their hard-won understanding of their own family’s needs to jumpstart nonprofit careers. According to Luna, a Latina mother who took a job at a medical nonprofit: “I’ve been able to accomplish something based on the fact that I’m a parent of a child with disabilities.” And Maddie, a white mother of an adult child with CP, did not just join a nonprofit—she started one. “It was just some moms who met in the waiting room at a therapy clinic [who wanted to offer] the opportunity to meet other parents who were in the CP world.”
The mothers who felt rewarded and resilient after taking stock of their long mothering careers were those who learned what they could do for their kids by being of the world and not apart from it—even when doing so proved difficult.
Certainly, mothers in privileged class positions had more opportunities to secure attractive jobs and create opportunities for themselves. Still, the social and psychological rewards of paid work and the path from volunteering into wage labor or salaried employment were not limited to these privileged women. The statistical patterns we found suggest that these experiences cut across education and income levels, and our interviews included women who had not gone to college and/or did not work in professional jobs who described drawing similar kinds of rewards from their work as their more socioeconomically privileged counterparts did.
Overall, we came away thinking that the mothers who felt rewarded and resilient after taking stock of their long mothering careers were those who learned what they could do for their kids by being of the world and not apart from it—even when doing so proved difficult.
keeping the spotlight on mothers raising children with disabilities
To be clear, we are not saying that mothers raising children with disabilities into adulthood face zero strains. We are saying that by looking at their their lives across social contexts, we learned more about the rewards that may balance those strains and gradually coalesce into a narrative of resilience. Since those dynamics are likely rooted in the diversity of this population and the various settings of their lives, we need more sociological work in this area.
Obviously, raising a child with one disability (say, Down syndrome) can differ from raising a child with another (say, cystic fibrosis). While our primary goal has been to sketch the basic parameters of this issue, there are specific lived realities within those parameters still to be interrogated. We have also made no mention of fathers, though many are active caregivers who carry the weight and feel the joys of parenting just like mothers. Shining a light on them is our next move.
Finally, we have admittedly only studied an ableist country offering minimal support for families in need, especially when children reach adulthood. We need comparative research to understand how families of children with disabilities here in the United States fare relative to those in other affluent countries with different approaches to supporting families of children with disabilities. Even within our own country, services and norms vary across locales (“I will literally be the first to say, Don’t [move here] because Texas does not offer a lot . . . and you have to wait and wait and wait!” exclaimed one mother in her 60s). Understanding what kinds of places are more or less conducive to successfully raising a child with a disability poses theoretical questions about how inequality operates and policy questions about how to reduce it.
Sociologically investigating variation among families of children with disabilities over the long haul is important, and not just because documenting what they face can galvanize support for them. It is also because the full complexities of their lives—their ups and downs, joy and pain—as families, neighbors, and citizens are what makes them human.
recommended resources
Emily Byers, Frank Valliere, and Amy Houtrow, eds. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. National Academies Press. This book-length report describes the basic conclusions of an expert panel of scientists convened to identify key themes and gaps in research on children with disabilities in the United States with a special focus on policy and intervention.
Center for Parent Information and Resources. This website is the hub of resources from the national network of parent centers supporting families of children with disabilities.
Amanda Gengler. 2019. “Save My Kid”: How Families of Critically Ill Children Cope, Hope, and Negotiate an Unequal Healthcare System. New York University Press. This book offers an in-depth exploration of the challenges that U.S. parents face as they interact with the health care system to find and secure the best care for their children with disabilities.
Dennis Hogan. 2012. Family Consequences of Children’s Disabilities. Russell Sage Foundation. This book presents the results of statistical analyses of multiple data sources to identify key disparities in economic and social circumstances between U.S. families of children with disabilities and other families.
Parent to Parent. This website introduces the work of a nonprofit organization that provides tools and resources for families of children with disabilities.