_Siblings’ Perspectives: A Conversation with Emily Holl and Courtney Arango

Recording Date: October 4,2023

Transcript: _Download transcript HERE

Keywords: SibShops, Sib20, SibTeen, Sibling Support Project, Sibling Leadership Network, siblings, Emily Holl, Geralyn Arango-Deely, Courtney Arango, Our Parallel Paths, sandwich generation, peronal futures planning, PATH, end of life planning

Summary: In this episode Gerry talks with two siblings – Emily Holl from the Sibling Support Project, and her own daughter, Courtney Arango – about their experiences growing up with their siblings who have disabilities, and the importance of planning for the inevitable time when parents are no longer in the picture. This important episode explores the many facets of caring for a sibling, the resources available, and the importance of building a network of support around you during this time.

Topical Index:

• Introductions [00:00]


• Siblings’ roles [01:20]


• Our family situation [02:49]


• Introducing Emily Holl – author and advocate [03:43]


• Introducing Courtney [05:23]


• The “sandwich generation’ [05:53]


• Courtney shares childhood perspectives [06:42]


• Courtney’s current thoughts – anticipating change [10:35]


• Emily’s journey [14:01]


• o Change driven by Peter


• o Planning a move to New York


• o Polices and procedures for funding eligibility requirements.


• o Investing in both of our futures


• o Caregiver from afar


• Finding People who share your experiences.


• Sibling Support Project


• o SibNet, Sib20, SibTeen, etc.


• o Understanding and Validating our experiences


• o Who lives my story?


• Friends and acquaintances’ reactions [27:17]


• Facing difficult conversations [28:32]


• o Include everyone


• o Have the conversation


• o Minimize the impact on everyone


• o It’s okay to have your own dreams


• All the pieces of planning [31:19]


• o Live in the moment


• o Have the conversations


• o Use your resources


• o PLANS CHANGE… it’s okay!


• o Re-visit now and then


• o Build in fun and relationships


• o What is the nightmare – confront it head on


• o Celebrate successes / progress

Resources

• ARC Center for Future Planning


• Sibling Support Project


• SIBSHOPS – Sibling Support Project


• The Future is NowCurriculum – Letter of Intent


• Connecting with Other Sibs

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