Introduction
Raising a child with Autism Spectrum Disorder (ASD) presents unique joys and challenges that shape the daily lives of caregivers. The study “Lived Experiences of Selected Mothers Nurturing Children with Autism Spectrum Disorder: Basis in the Development of Mental Health Workbook towards Well-Being” by Amados et al. (2024) explores these dynamics through the lens of ten Filipino mothers from Cavite, Philippines. Focusing on their personal narratives, the research aims to develop a mental health workbook tailored to the well-being needs of these mothers. By employing a qualitative phenomenological analysis, the study captures the diverse emotional landscapes and practical struggles faced by these mothers. Using the SWOT (Strengths, Weaknesses, Opportunities, and Threats) analysis framework, the study reveals a nuanced picture of their resilience, vulnerabilities, opportunities for growth, and external challenges.
A Detailed Analysis Using the SWOT Framework
The study’s application of the SWOT framework provides a structured view of the lived experiences of mothers caring for children with ASD. This approach highlights their inner strengths, emotional struggles, external support opportunities, and threats that impact their caregiving role.
1. Strengths: Resilience in the Face of Challenges
Robust Support Systems
For many of the participating mothers, the presence of a strong support system is crucial in maintaining their resilience. Immediate and extended family members, friends, and community networks offer both emotional and practical support. The mothers often emphasize the role of their spouses, parents, and siblings in providing comfort, understanding, and even financial help. This collective support allows the mothers to focus more effectively on their children’s needs and adapt to the unique challenges posed by ASD. The role of community support is further corroborated by similar studies, such as Ilias et al. (2018), which highlight the importance of social networks in reducing parental stress.
Acknowledging and Accepting the Diagnosis
A significant turning point for these mothers is their acceptance of their child’s diagnosis. This process, though emotionally demanding, enables them to adopt a more hopeful outlook. Seven of the ten mothers describe the transition from denial to acceptance as a key source of strength, allowing them to better navigate the uncertainties of ASD. Acceptance helps shift their focus from what their child cannot do to the unique qualities that make their child special. According to Mansur et al. (2022), acceptance often follows a grief process, including stages such as denial, anger, and depression, before arriving at a state of acceptance.
Finding Joy in Small Milestones
Despite the difficulties, mothers find immense joy in their children’s developmental milestones and expressions of affection. Even minor achievements, such as a few spoken words or a gesture of kindness, are deeply cherished. For instance, Respondent #5 finds comfort when her child, though speaking few words, expresses joy through laughter. These moments create a sense of progress and connection, reinforcing the mothers’ commitment to their children. Such experiences echo the findings of Baird-Bate (2019), who noted that raising a child with ASD, while challenging, also offers moments of profound satisfaction and growth.
Overcoming Health Challenges
Several mothers recount significant health challenges they faced, both in their children’s lives and their own. These include overcoming serious conditions like APAS (Antiphospholipid Antibody Syndrome) that led to miscarriages, managing preterm births, and dealing with surgeries. Respondent #4, for example, shared the difficulties of her child undergoing hernia surgery, compounded by her own health issues. Despite these trials, the mothers show resilience and a determination to provide the best care possible. Their stories highlight how intertwined the health of the caregiver and the child can be, each influencing the other’s well-being.
2. Weaknesses: Inner Struggles and Emotional Vulnerabilities
Self-Doubt and Feelings of Inadequacy
The mothers in this study often grapple with feelings of self-doubt and inadequacy. This is a common thread in the narratives, as they question their abilities to meet the needs of their children, especially when confronted with behavioral challenges or developmental delays. Respondent #4, for instance, wonders if she is doing enough when she struggles to understand her child’s needs. Respondent #9 shares concerns about her decision to limit her child’s interactions with the outside world, fearing that it might hinder development. These inner battles are echoed in similar studies, such as Bangoy’s (2023) research on parental self-doubt during the pandemic, where mothers felt the pressure of being both caregivers and educators.
Concerns About Delayed Developmental Milestones
The stress associated with delayed speech and motor skills is another prominent challenge. Mothers frequently compare their children’s progress to that of neurotypical peers, which amplifies their anxiety. Respondent #6 discusses how her child’s lack of response to his name led to an early suspicion of developmental issues, prompting her to seek therapy. However, the slow pace of progress sometimes makes these efforts feel inadequate, leaving the mothers frustrated. This aligns with the findings of Kadir (2020), which emphasize the emotional toll on parents when developmental milestones are not met within expected timeframes.
Limited Communication and Its Emotional Toll
For mothers of children with limited verbal communication skills, understanding their children’s needs can be particularly challenging. The inability to clearly communicate leads to frustration on both sides, as children struggle to express their needs and parents find it difficult to interpret their emotions. This gap can lead to feelings of helplessness and emotional exhaustion, as the mothers strive to bridge the communication barrier through non-verbal means.
3. Opportunities: Pathways to Support and Growth
Social Benefits and Financial Aid
Access to social benefits like the Persons with Disabilities (PWD) ID provides some financial relief to these families. The PWD ID offers discounts on medications and therapies, easing the burden of ongoing medical expenses. Respondent #1 notes that while these benefits are helpful, they are not comprehensive enough to cover all expenses. Furthermore, access to additional financial aid through local government programs, though beneficial, is not always consistent or easy to navigate. This mixed experience of accessing support highlights the need for more structured assistance programs to address the financial challenges faced by these families.
Specialized Learning Environments
The positive impact of therapy centers and special education (SPED) schools is another key opportunity for the mothers. Respondent #2 observes that her son excels in the supportive atmosphere of a SPED school, where he feels comfortable expressing himself. Such environments enable children with ASD to develop communication skills and engage with peers in a way that traditional schools may not facilitate. These settings, tailored to meet the unique needs of children with ASD, help to create a sense of normalcy and stability for both the children and their parents.
Bonding and Self-Care
The mothers emphasize the importance of bonding activities, such as storytelling, playtime, and creative projects, in strengthening their relationships with their children. These activities not only foster a sense of connection but also provide opportunities for the mothers to focus on their children’s emotional needs. Additionally, the study highlights the mothers’ efforts to practice self-care, recognizing that their well-being is crucial for effective caregiving. This includes simple activities like reading, watching movies, or engaging in community service, which provide moments of respite and renewal. These self-care strategies align with the findings of Baird-Bate (2019) and highlight the importance of balance between caregiving and personal well-being.
4. Threats: Societal Pressures and Unpredictable Challenges
Social Stigmatization and Isolation
The social stigma associated with raising a child with ASD is a significant challenge for many mothers. Public judgment and misunderstanding often lead to feelings of isolation and reluctance to participate in social activities. Mothers like Respondent #5 find themselves explaining their child’s behavior to strangers or using identification booklets to prevent misunderstandings. While some mothers adopt a more resilient stance, choosing to prioritize their child’s well-being over societal perceptions, the weight of stigma remains a persistent challenge.
Financial Strain and Limited Resources
The high costs of therapies, special education programs, and other essential services place a considerable financial burden on these families. Many mothers, such as Respondent #4, have had to give up their careers to become full-time caregivers, which further strains their financial situation. The study underscores the need for more comprehensive support systems that address both the financial and practical needs of these families.
Behavioral Challenges and Emotional Outbursts
Managing the behavioral challenges of children with ASD, such as tantrums and hyperactivity, is another source of stress for mothers. Respondent #6 describes the unpredictability of her child’s outbursts, which can disrupt daily routines and make social interactions difficult. Such behaviors, while part of the child’s condition, can be difficult to navigate, especially in public settings. This contributes to the overall stress and anxiety experienced by the mothers, impacting their mental health.
The Development of a Mental Health Workbook: Supporting Well-being
The insights gathered from the study led to the creation of a mental health workbook aimed at supporting the well-being of mothers raising children with ASD. The workbook is inspired by Martin Seligman’s PERMA model, which focuses on positive emotions, engagement, relationships, meaning, and accomplishment. It includes activities such as crossword puzzles, origami instructions, photo journaling, and sensory toy-making. These activities are designed to help mothers reflect on their experiences, find joy in their daily lives, and strengthen their connections with their children.
The workbook also includes sections on self-care and goal-setting, providing mothers with practical tools to manage stress and prioritize their well-being. By focusing on engagement and accomplishment, the workbook aims to foster a sense of progress and fulfillment, helping mothers maintain a positive outlook in their caregiving journey. It serves as a reminder that even small moments of joy and self-reflection can contribute significantly to the overall well-being of mothers and their families.
Conclusion: A Call for Empathy and Support
The study by Amados et al. (2024) offers valuable insights into the lives of mothers caring for children with ASD, highlighting both the resilience and challenges they face. It calls for greater societal empathy, structured financial support, and community programs that can ease the burden on these families. The development of a mental health workbook is a step towards providing practical support, empowering mothers to prioritize their well-being while caring for their children.
By sharing the stories of these mothers, the research invites a broader understanding of the complexities of caregiving for children with special needs. It reminds us that while the journey is fraught with difficulties, it is also filled with moments of deep love, connection, and growth. Creating a more inclusive and understanding environment can make a significant difference in the lives of these families, allowing them to thrive alongside their neurodivergent children.
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