Building Resilient Caregivers

Quick Overview

Amanda Griffith-Atkins, a licensed marriage and family therapist and mother to a child with Prader-Willi syndrome, addressed caregivers at the ASF Family Conference. She shared her personal journey, highlighting the challenges and emotional complexities of parenting a child with a disability. Amanda emphasised the importance of acknowledging and expressing difficult emotions such as grief, anger, and anxiety, which are often intertwined with the experience of raising a child with special needs. She encouraged caregivers to connect with others who understand their struggles, fostering a sense of community and support. Amanda also stressed the distinction between feelings about the challenges of parenting and the love for one’s child, advocating for open discussions about the hardships without fear of judgment. Her message underscored the necessity of owning one’s story and embracing vulnerability to find resilience and hope.

In a heartfelt and candid talk at the 2024 ASF Family Conference, Amanda Griffith-Atkins, a licensed marriage and family therapist, shared her personal journey and insights on the challenges and emotional complexities of parenting a child with a disability. As a mother to a 15-year-old son with Prader-Willi syndrome, Amanda’s experiences resonate deeply with many parents navigating similar paths.

The Unprepared Journey

Amanda began by acknowledging the overwhelming nature of parenting a child with a rare genetic disorder. She recounted her own experiences with her son, Asher, who was diagnosed with Prader-Willi syndrome, a condition characterised by a constant feeling of hunger, cognitive impairments, and other health challenges. Amanda’s story is one of resilience, having faced the early days of multiple therapies, surgeries, and the decision to pause her career to care for her son.

The Emotional Roller Coaster

The talk delved into the emotional turmoil that accompanies such a parenting journey. Amanda spoke openly about the grief, anger, and isolation she felt, particularly when comparing her life to those of her peers. She highlighted the duality of emotions—feeling both immense love for her child and profound sadness for the challenges they face. This duality is a common thread among parents of children with disabilities, as they navigate a world that often feels unprepared and unsupportive.

The Power of Vulnerability and Connection

Amanda emphasised the importance of vulnerability and finding a supportive community. She shared how connecting with other parents of children with disabilities provided her with a sense of relief and understanding. These connections allowed her to express her true feelings without fear of judgment, fostering a space where “bad vibes” are welcome and understood.

Challenging Cultural Norms

A significant part of Amanda’s message was about challenging societal expectations and the culture of “good vibes only.” She argued that avoiding unpleasant emotions only amplifies them, and that acknowledging and processing these feelings is crucial for healing and resilience. Amanda encouraged parents to own their stories, as Brene Brown suggests, rather than running from them.

A Call to Embrace the Hard Stuff

Amanda’s talk was a call to action for parents to embrace the hard parts of their journey. She reassured them that feeling anger, grief, and jealousy does not make them bad parents. Instead, these emotions are a natural part of the complex experience of raising a child with a disability. By owning their stories and sharing their truths, parents can find strength and solidarity in their community.

In conclusion, Amanda Griffith-Atkins’ talk was a powerful reminder of the resilience and courage required in the face of adversity. Her message of vulnerability, connection, and self-acceptance offers hope and inspiration to caregivers navigating the challenging yet rewarding journey of parenting a child with a disability.