Siblings of Individuals with Angelman Syndrome Panel Discussion

Quick Overview

Siblings of individuals with Angelman Syndrome discussed their experiences and offered advice during a panel discussion. They emphasized the importance of open communication and ongoing conversations about future planning. The panelists shared their personal journeys and highlighted the need for support and understanding from parents. They also discussed the significance of quality time and individual relationships with their siblings. The panelists suggested starting conversations about transitioning to adulthood and caregiving responsibilities at an early age, while also acknowledging that perspectives may change over time. The panelists expressed gratitude for resources and support from the Angelman Syndrome Foundation and encouraged parents to seek therapy and connect with other siblings for additional support. The panel concluded with announcements about upcoming programs and events for adult siblings and families.

Date: 11th August 2021

Author(s): Lesley McCallister, Drew Wilkerson, Alex Jamieson, Amber Rippy, Michelle Harvey

Introduction

Welcome to the panel discussion on siblings of individuals with Angelman Syndrome. This discussion took place during the 2021 ASF Virtual Family Conference. The panel consisted of Lesley McCallister, Drew Wilkerson, Alex Jamieson, Amber Rippy, and Michelle Harvey. The panel was moderated by Kathryn Ely, the Family Resource Advocate at ASF. The panelists shared their experiences as siblings of individuals with Angelman Syndrome and provided insights and advice for other siblings and parents.

Introductions

The panelists introduced themselves and shared a positive memory with their sibling with Angelman Syndrome. Drew Wilkerson, an older brother, shared how his sister Paige embraced their newborn baby and developed a strong bond with him. Alex Jamieson, the oldest of three girls, talked about her sister Carly’s affectionate nature and how she craved physical touch from her. Michelle Harvey-Martin, the oldest of three, mentioned her brother Matt’s unique laugh and how she enjoyed his hugs. Amber Rippy, a younger sister, shared a special memory of her sister Ashley being the maid of honor at her wedding. Lesley McCallister, the oldest of four girls, recalled a family skiing trip where her sister Kate conquered skiing and felt proud of herself.

Discussion on Younger Siblings

The panelists discussed their experiences as younger siblings and how they navigated their relationship with their sibling with Angelman Syndrome. They emphasized the importance of open communication and allowing younger siblings to express their feelings without judgment. The panelists also highlighted the significance of maintaining a balance between the needs of the sibling with Angelman Syndrome and the needs of the other siblings. They shared personal anecdotes and advised parents to create opportunities for one-on-one time with each child to strengthen their bond.

Transitioning to Adulthood

The panelists discussed the topic of transitioning their sibling with Angelman Syndrome to adulthood and the expectations placed on them as adult siblings. They shared their personal perspectives on caring for their sibling in the long term and the importance of open conversations with parents about future plans. The panelists emphasized the need for ongoing discussions and the importance of considering the wishes and desires of the sibling with Angelman Syndrome. They also highlighted the significance of legal and financial planning to ensure a smooth transition of care.

Advice for Parents

The panelists provided advice for parents of siblings of individuals with Angelman Syndrome. They recommended open communication, therapy for siblings, and creating a roadmap of information and resources for future caregivers. The panelists emphasized the importance of acknowledging the challenges and emotions that siblings may experience and providing support and understanding. They also encouraged parents to involve siblings in decision-making processes and to consider their perspectives and desires.

Future Support and Resources

The panelists discussed upcoming initiatives and resources for siblings of individuals with Angelman Syndrome. They mentioned the launch of a junior ambassador program called “Friends with Wings” and an adult siblings group. These initiatives aim to provide support, information, and a platform for siblings to connect and share their experiences. The panelists expressed their gratitude to the Angelman Syndrome Foundation for their efforts in supporting siblings and families.

Conclusion

The panel discussion provided valuable insights and advice for siblings of individuals with Angelman Syndrome and their parents. The panelists emphasized the importance of open communication, understanding, and support for siblings throughout their lives. They highlighted the need for ongoing conversations about transitioning to adulthood and future care. The upcoming initiatives and resources mentioned by the panelists aim to further support and empower siblings in their unique roles.