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Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2
Manage episode 459924854 series 1054126
Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2
What happens when a medical professional dismisses your concerns about your child’s health? How do you move forward when you're made to feel like you're imagining things?
If you're a parent of a child with a rare disease, you've probably faced moments of disbelief from others—especially from those you trusted to help. This episode dives into one such experience, sharing practical insights on how to navigate this emotional and isolating journey while advocating for your child.
Learn how to recognize the signs of cortical visual impairment (CVI) and why early identification matters.
Discover strategies to manage the emotional toll of feeling dismissed or gaslit as a rare disease parent.
Gain actionable tips for building resilience and finding allies who truly listen and care.
Hit play now to hear this week's episode and equip yourself with tools to advocate for your child, even when the system feels stacked against you!
101 episoder
Manage episode 459924854 series 1054126
Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2
What happens when a medical professional dismisses your concerns about your child’s health? How do you move forward when you're made to feel like you're imagining things?
If you're a parent of a child with a rare disease, you've probably faced moments of disbelief from others—especially from those you trusted to help. This episode dives into one such experience, sharing practical insights on how to navigate this emotional and isolating journey while advocating for your child.
Learn how to recognize the signs of cortical visual impairment (CVI) and why early identification matters.
Discover strategies to manage the emotional toll of feeling dismissed or gaslit as a rare disease parent.
Gain actionable tips for building resilience and finding allies who truly listen and care.
Hit play now to hear this week's episode and equip yourself with tools to advocate for your child, even when the system feels stacked against you!
101 episoder
Alla avsnitt
×1 Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 2 of 2 12:50
1 Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2 11:39
1 The Power of Accepting Help: A Farewell to Shawdiya 7:01
1 Unlocked: Tess’s Midnight Adventure and the Lessons It Taught Us 7:28
1 Turning the Tables: How to Face Evaluations and Advocate for Your Child 12:07
1 Burnout Busters: How Caregivers Can Find Energy and Connection Outside the Home 9:31
1 Filling Your Bucket: Stress-Free Holidays for Rare Disease Families 16:15
1 Uncharted Territory: ADHD, Rare Disease, and the Struggles with Medication 11:19
1 Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting 8:30
1 Breaking Through Isolation: Finding Connection as a Rare Disease Parent 15:14
1 Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents 14:37
1 Building Your Child's Dream Team: Navigating Therapies for Rare Diseases 15:29
1 Stronger Together: Aligning with Your Partner on the Rare Disease Journey 16:37
1 Tech Solutions for Easier Communication: Helping Your Neurodiverse Child Express and Self-Soothe 16:33
1 Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2 9:17
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