Developmental Disabilities: Caring for a Developmentally Challenged Child
By Kristie Abbs, DSW, MEd, LCSW, LISW, BSL
Social Work Today
Vol. 23 No. 1 P. 8

Understanding the Complex Needs of Parents and Caretakers

Raising a child with developmental needs poses many challenges for parents and caretakers. The roles and responsibilities of caring for a developmentally challenged child require considerable time and energy to ensure their safety and meet their demands. While the focus of all involved is mainly on meeting the needs of the children, parents and caretakers are left to deal with their own stressors, fatigue, and worry. The impact has proven to increase their physical and mental health issues.

Challenges Faced by Parents
A child with a developmental disorder such as autism can have increased behavioral, mental health, learning, and care needs. Parents and caretakers work to provide all the needed services for their children and put most of their time into their children’s needs, often leaving their own needs unmet. While many programs and supports exist for children, limited resources are available for parents and caretakers. The lack of services for parents leaves them vulnerable and at risk for additional stress. Furthermore, the challenge of caring for their children leads to fatigue and increased health issues in the parents and caretakers, which negatively affect the children they raise.

Caring for a child with developmental needs requires parents and caretakers to provide full-time supervision due to safety concerns and additional care needs with tasks such as dressing, eating, school, and play. The added pressures of supervising children increase time commitments and fears related to the safety of children. Parents and caretakers have to provide more supervision while completing all of their daily tasks in the roles they play in their lives, such as parent, employee, spouse, and friend. Often parents and caretakers are unable to find others who are willing to care for their children due to the challenges faced when watching them. Even family members may not want to help protect children due to the supervision requirements and extended needs of the children. While every child is different in their capabilities, the need for increased care exists, placing greater responsibilities on parents and caretakers with limited ways to gain help from others.

Impact of Stress
High stress levels have been proven to raise the risk of cancer, autoimmune disorders, infections, depression, anxiety, and other ailments. The impact stress plays on physical and mental functioning can lead to adverse outcomes that are sometimes irreversible. The increased strain and struggles negatively affect all areas of life, including work, finances, and routines, making stress a factor that needs attention and resolution to decrease the adverse effects on the parents and caretakers. In addition, higher hospitalizations, mental health treatment, and burnout occur, preventing parents and caretakers from caring for themselves and others.

Increased stress levels occur in parents and caretakers when developmentally challenged children have behavioral issues, communication deficits, and social impairments. Parents and caretakers may experience difficulty in handling negative behaviors such as aggression. They struggle with using behavioral techniques to control behaviors and the care demands for preventing an incident. Before they have children, parents typically do not have any parent training. Lack of parenting skills and knowledge to care for children with behavioral problems leads to increased parental and caretaker struggles demonstrated in negative mood and higher rates of anxiety.

In addition, communication deficits found in children with developmental challenges can inhibit the ability of parents and caretakers to speak and interact with their children. Parents and caretakers express concern over not understanding the wants and needs of their children. Stress heightens in parents, caretakers, and children when there is difficulty communicating and interacting effectively.

Social interaction impairments are another issue for children experiencing developmental challenges—one that makes interactions difficult for parents, caretakers, and children. Negative social interactions include the inability to express feelings, boundary issues, conflicts, poor cooperation, and withdrawal. The social impairments have the potential to impede building relationships and often lead to negative feelings, despair, and increased stress levels in parents and caretakers.

These challenges strain parents and caretakers, influencing their mental health. They express concerns about depression and anxiety related to the care needs of their children with developmental challenges. Stress is a known factor that affects levels of optimal functioning. Parents and caretakers feeling undue stress related to their mental health have more difficulty completing daily tasks and caring for themselves and their children.

Services Available for Parents
Some communities offer programs for developmentally challenged children at mental health facilities, and other agencies offer treatment for children and families; some organizations provide parent and caretaker support groups and parent training. Most of these programs focus on the individual needs of the children, not those of the parents and caretakers, so there’s a critical need for programs providing parents and caretakers with skills with which to cope with their challenges.

In certain places, especially rural communities with fewer social workers and agencies providing treatment, these programs aren’t offered. And in communities that do offer programs, there are often barriers to participation; for example, they’re difficult to access. These barriers may be related to transportation, financial problems, distance, lack of daycare, time conflicts, other responsibilities, and health issues of parents and caretakers. All of these factors could influence parents’ ability to join and gain the benefits needed to improve their functioning and quality of life.

Social workers and other professionals could assist parents and caretakers in finding ways to overcome these hurdles through the development and availability of additional resources. Advocating for changes and new opportunities could lead to better functioning and quality of life for everyone. Parents and caretakers have been open to discussing their concerns when asked. Likewise, social workers have a chance to listen and ask them what they require, taking time to focus on their needs and help them learn new skills with which to better cope. Offering support leads parents and caretakers to seek services for themselves, encourages them to make changes, and instills hope.

Coping Skills Development
By enhancing coping skills in parents and caretakers, social workers can help them manage daily stressors and lead to more effective parenting practices. When parents are taught new coping skills and use them in their day-to-day functioning, they can better deal with the challenges they face with their children. Improved outcomes occur when social workers understand the importance of assessing needs and providing care in the realms of mental and physical health to meet parent and caretaker needs.

Programs offered in the community can have a significant impact by helping parents and caretakers learn how to develop and use positive coping skills to decrease their stress levels, allowing them to focus on their needs and the child. Placing subprograms within existing programs for children can add a component that focuses on the parents’ and caretakers’ needs. Coping strategies could include teaching parents and caretakers skills such as meditation, exercise, deep breathing, visualization, communication, and other practices to help them learn to reduce their stress levels. Social workers can discuss available resources for skill-building and provide them with encouragement and support.

Building these coping skills can involve the community by having stakeholders work together and share the responsibility of providing services to meet the needs of parents and caregivers. In addition, stakeholders can join together to provide resources and education, increasing parents’ and caretakers’ understanding, knowledge, and use of these skills. When parents and caretakers have opportunities to improve their coping skills, they increase their awareness, communication, collaboration, and connectedness with community stakeholders. As a result, communities have a chance to work together and build on positive outcomes for those raising developmentally challenged children.

Roles of Social Workers and Other Professionals
Focusing not only on the child but also on the parents and caretakers allows everyone to learn new skills and grow as individuals and as family units, making positive strides toward change.

Social workers and other professionals also can offer their expertise to other professionals in their communities. Shared information must focus on parental and caretaker needs through educational training, staffing, resources, and increased collaboration to ensure that parents and caretakers have different avenues to pursue for needed services and support.

Communicating about the impact of raising a child with developmental challenges on parents and caretakers can allow everyone in a community to be involved and provide support. Social workers can offer training to other professionals in the community who work with developmentally challenged children that could occur over lunch and during community activities such as a 5K walk/run, charity auction, yard sale, and festival to help educate professionals and community members while also helping to increase funding to develop new programs and services for parents and caretakers. In addition, educational materials handed out and left in common areas can provide more information about parents’ and caretakers’ needs and discuss ways everyone can make positive steps in helping those raising children with developmental needs.

— Kristie Abbs, DSW, MEd, LCSW, LISW, BSL, is an assistant professor and director of MSW Field Experience at Slippery Rock University. She specializes in mental and behavioral health and has presented in national conferences.