Ep 88: Fiona on Birth, Diagnosis, and Not Looking Too Far Ahead
Fiona is mama to Casey, a 2 year old living with Prader-Willi syndrome. She shared with me her birth story and the challenges that arose from some common PWS characteristics. We also talked diagnosis, not looking too far ahead, and the beautiful lessons that can be learned from being the mother to a child born with a genetic condition. I also share a recently written piece called, “This Is Not Political.”
2 Mar 2024
Ep 87: Vulnerability and Healing with Molly, a Sibling
This conversation begins right in the middle of vulnerability, smack dab in the middle of reflection growth, and healing, and I thought it was a beautiful way to start. For context I’ll tell you that Molly’s sister, Brooke is almost 50 and lives in Michigan. Molly is her younger sister and her guardian living in CA. She grew up in a house where her sister’s disability, or emotions for that matter, were rarely, if ever, discussed. This has sent Molly on a quest to understand the repercussions of being left out of the conversation. While grief and emotional suffering have been a part of her journey, she is finding her way to connection, growth and healing, and it is beautiful to witness.
In the middle of this all, there is also some great information on what guardianship looks like and one approach to caring for an adult with PWS and the logistics around that. And of course, wise advice for parents on how to raise siblings alongside a child with PWS.
For those interested in poetry, especially poetry about parenting a child with disabilities, there is a special treat at the end of the conversation. Find the link to my new poetry collection, "Victory Garden", in the show notes.
12 Sept 2023
Ep 86: Alliance Against Seclusion & Restraint with Guy Stephens
Guy Stephens is the Founder and Executive Director of the Alliance Against Seclusion and Restraint. First we discuss what restraint and seclusion in schools looks like, the origins of behvior in individuals, and the work that AASR does. The heart wrenching part of the episode is the stories of kids who have suffered under these archaic actions. The inspiration is in the work AASR has and still is doing, and the ways that families can seek help or offer it. Please check the show notes for the link tree to reach out the the organization, support their cause, buy merch, listen to the podcast and more. I found this episdoe to be incredibly enlightening and plan to share it widely to spread the word. I hope you will do the same.
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Apple Podcasts (US)
5.0 / 5
35 ratings
Podcast Authority Score: 23 / 100
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25
Social presence
0
YouTube
0
Engagement
51
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