Eva’s Journey: From Birth to Advocacy for Her DS Daughter Arwen

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Have you ever felt an indescribable intuition about your child’s health? Ava from the East Coasr joins us to share her poignant and insightful journey of motherhood, starting with her daughter Arwen's birth and the unforeseen challenges along the way. Ava opens up about her pregnancy, including a rushed 20-week scan that left her with lingering concerns about Down syndrome, and the dramatic labor that culminated in an emergency C-section. She candidly discusses the emotional and physical hurdles she faced, painting a vivid picture of the rushed medical procedures and the overwhelming presence of medical trainees during the birth.
After taking Arwen home, Ava and her family navigated the emotional labyrinth of a Down syndrome diagnosis, filled with moments of confusion and conflicting medical information. Leaving the hospital, they faced immediate challenges, like Arwen struggling with the car seat test and delays in receiving essential blood test results. Despite the initial turmoil, Ava's resolve to advocate fiercely for her child shines through. Ava shares invaluable advice from geneticists about common health concerns like congenital heart defects and hearing issues, stressing the importance of trusting parental instincts and seeking second opinions.
As Arwen grows, her developmental journey brings new challenges and triumphs. Ava recounts how early intervention therapies, including occupational and speech therapy, have been crucial. The family embraced American Sign Language (ASL) and explored Augmentative and Alternative Communication (AAC) devices to enhance Arwen's communication skills. Ava’s story is a testament to the transformative power of love and resilience in raising a child with special needs. This episode offers heartfelt insights and practical resources that can inspire and guide other parents on similar journeys. Don’t miss this touching and informative discussion with Ava, and be sure to check the links in the description for more resources.

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1. Eva’s Journey: From Birth to Advocacy for Her DS Daughter Arwen (00:00:00)

2. Birth Story and Resources for ASL (00:00:09)

3. Navigating a Down Syndrome Diagnosis (00:12:29)

4. The Challenges of Heart Surgery (00:20:05)

5. Speech Development and AAC Devices (00:34:55)

6. Parenting a Child With Down Syndrome (00:43:11)

7. Sharing Birth Story and Resources (00:57:26)