Child Life On Call |  Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

Episode 185 | J.R.'s Story- A son with a Rare Disease


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Meet J.R., a parent on a challenging journey. From aggressive behaviors to sensory challenges, she shares her struggles of raising a child with severe special needs. But just when things start to improve, an event occurs which leaves her questioning everything. You will not want to miss this story of resilience and uncertainty.

In this episode, you will be able to:

  • Gain insights into the journey of raising a child with significant special needs, and learn how to turn these experiences into growth opportunities.

  • Discover the challenges in obtaining an early diagnosis and the role of perseverance in overcoming these hurdles.

  • Understand the importance and the process of tailoring therapeutic interventions for your special needs child.

  • Identify the importance of self-care and support networks for parents and caregivers of special needs children.

  • Immerse in the raw and real-life narration of completing a book detailing a child's unique experiences.

My special guest is J.R.

Meet J.R., a remarkable woman whose world authentically embodies the complexities and nuances of parenting. An academic powerhouse, J.R. boasts a solid background in molecular biology and human genetics. But it's her real-life experience as a mother to three beautiful sons - one of whom has a severe diagnosis - that truly validates her expertise. Her middle son's journey with intellectual disability, seizures, autism, and behavioral challenges led to his group home placement from the age of twelve. J.R.’s dedication to understanding and improving the lives of children with complex needs manifests in her volunteering with the SynGAP Research Fund. Her candid accounts of becoming a parent, navigating the healthcare system, and learning to balance her family's varied needs radiate a contagious strength and resilience.

The key moments in this episode are: 00:00:09 - Welcome to ChildLife on Call, 00:01:11 - Introduction of Jr. and her Family, 00:06:40 - Placing Her Son in a Group Home, 00:10:17 - Transitioning into Motherhood, 00:11:29 - Advocating for Her Son's Needs, 00:15:41 - The balance between love and fear, 00:16:29 - Therapy and transformation, 00:18:03 - Floor Time therapy, 00:22:26 - Wisdom of a child, 00:25:19 - Self-care and challenging cultural expectations, 00:30:48 - The Start of Challenging Behaviors, 00:32:36 - Underestimating Sensory Challenges, 00:34:22 - Reaching a Breaking Point, 00:36:14 - Fear and Relief in Getting Help, 00:45:46 - The struggle to finish the book, 00:46:15 - Joey's aging, 00:46:53 - Timing is everything, 00:47:32 - Gratitude for the community, 00:48:09 - Conclusion and resources

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Child Life On Call |  Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & SupportBy Katie Taylor, CCLS

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