Sarah Wayland, founder of Guiding Exceptional Parents and mother to two autistic young men, shares her profound insights on the emotional challenges faced by parents of adult children with autism. She discusses navigating the complexities of independence while managing caregiver emotions like grief and jealousy. Emphasizing the importance of community support, Sarah offers coping strategies and lobbies for systemic changes in care services. Listeners will find inspiration in her advocacy for shared experiences and the delicate balance of planning for the future.
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Quick takeaways
Parents of children with special needs often navigate profound emotional grief and jealousy while seeking support from their community.
Accessing adult services for disabled children can be overwhelming; parents are encouraged to plan thoughtfully and seek collective resources.
Deep dives
The Challenge of Non-Traditional Empty Nesting
Navigating the transition to an empty nest can be particularly challenging for parents of children with special needs. One mother, grappling with the reality that her 21-year-old daughter, who has severe autism, is aging out of the school system, expresses feelings of loneliness and concern. Unlike her friends, who will experience newfound freedom, she faces the daunting task of lifelong caregiving while simultaneously dealing with feelings of loss and longing for normalcy. This situation highlights the emotional conflict many parents experience as they transition into new life phases that do not align with societal norms.
Emotional Burdens and Coping Mechanisms
The emotional toll of parenting a child with significant support needs often manifests in feelings of jealousy and grief. Parents may find themselves envious of peers who can travel or enjoy a typical family dynamic, while simultaneously feeling guilt for harboring such emotions. It's crucial for parents to recognize and validate their feelings, which can aid in processing the complex nature of their situation. By confronting their own emotions and seeking support from others who share similar experiences, parents can find healthier ways to cope with the challenges they face.
Navigating Adult Services for Disabled Children
Accessing adult services for children with disabilities can be an overwhelming and frustrating process, especially given the variability in state support. For many parents, this transition brings challenges such as lengthy waitlists for crucial programs and an often underfunded system that lacks clear guidance. The podcast emphasizes the importance of seeking help from fellow parents and navigating resources collectively to alleviate some of the burdens. Understanding that many families experience similar hurdles can foster a sense of community and provide practical solutions as they navigate adult services.
Long-Term Planning and Interdependence
Planning for the future in the context of caring for a disabled child often requires thoughtful preparation and community support. Parents need to consider long-term care options and develop a letter of intent that outlines their child's needs and preferences for caregivers in the event of their absence. This planning not only helps ensure continuity of care but also allows parents to confront difficult emotions tied to their mortality and the realities of their child's future independence. Emphasizing interdependence rather than independence can help create a network of support that benefits both parents and their children.
As the parent of five kids, Sadie is no stranger to feeling overwhelmed. Most of her kids have left the nest, but one adult daughter has severe autism and can’t live or work on her own. Facing the end of school-based support services, Sadie has to figure out what comes next for her daughter—and for herself. On this episode of How To!, Carvell Wallace brings on Sarah Wayland, the founder of Guiding Exceptional Parents, to talk about parenting two autistic young adults and how to ask for help.
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