Making Sense of It All: Coping, Caregiving and Coming Together
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Making Sense of It All: Coping, Caregiving and Coming Together
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In this episode, I chat with Sarah Pot, a mother of four and family engagement advocate with two daughters, both who have Chitayat-Hall Syndrome. In our conversation, we chat about the importance of “sense-making,” to cope with the uncertainty and complexities that come with caregiving, but also the joy in learning and honouring our child’s unique personalities and the stories they want to share with the world.
We chat about the pivotal moments that helped her family thrive, from the life-changing role that therapies have played to the building of a support network of people and professionals who truly “get it.”
Sarah also gives us a glimpse into her role as a family engagement team member at CanChild, and the remarkable work they do to improve the lives of children with disabilities and their families.
This conversation is a beautiful reminder of the power of perspective and the importance of coming together to learn from each other.
Chapters:
00:00- Introduction to the Episode
01:08- Meeting Sarah Pott: A Journey Through Caregiving
02:26- Sarah's Story: Navigating Early Challenges
05:14 -The Diagnosis Journey: Rachel and Janneke
08:31- Sense-making and Coping Strategies
17:21 -Community Support and Professional Engagement
23:12- Balancing Family Dynamics
25:46- Empowering Children to Lead
26:38- Understanding Individual Needs
29:05- The Importance of Storytelling
30:49- Inclusive Communication Strategies
34:22- Family Engagement in Research
41:07- Strength-Based Approach to Disability
47:41 -Implementing Family Engagement
53:10- Final Thoughts and Resources
Episode Link & Tools:
- Check out the work Sarah and other team members are doing at CanChild.
Check out the F-Word tools from CanChild that Sarah chats about!