Stronger Every Day

Dec 10 2024 100 ep. 9 mins 67
Stronger Every Day Podcast artwork

I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism

  Kids & Family
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Burnout Busters: How Caregivers Can Find Energy and Connection Outside the Home

Dec 10 2024 9 mins  
If you’re juggling endless tasks like medical appointments, therapy sessions, and daily care for your child with a rare disease, burnout might feel inevitable. But in this episode, you'll discover how small changes in your routine can help you overcome that soul-crushing fatigue while fostering a sense of community for you and your child.

Filling Your Bucket: Stress-Free Holidays for Rare Disease Families

Dec 03 2024 16 mins  
For parents of children with rare diseases, the holiday season often amplifies stress, disrupts routines, and makes it hard to enjoy quality time. This episode tackles these challenges head-on, offering actionable tips to help you turn the season into one that restores and uplifts you.

Uncharted Territory: ADHD, Rare Disease, and the Struggles with Medication

Nov 26 2024 11 mins  
In this episode, we explore Tess’s journey with ADHD, rare disease, and her unexpected reaction to a new medication—highlighting the complex realities of balancing treatments and unknowns. Whether you’re a parent navigating similar challenges or a caregiver seeking insights, this episode is for you.

Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting

Nov 19 2024 8 mins  
In this episode, we dive into Tess’s journey with anxiety, impulsivity, and executive function challenges—issues that may resonate with many parents navigating similar struggles. Learn about how we’re uncovering the roots of these behaviors and seeking effective strategies to help Tess thrive.

Breaking Through Isolation: Finding Connection as a Rare Disease Parent

Nov 12 2024 15 mins  
In this episode, you'll learn how to break through the walls of isolation that can accompany raising a child with a rare disorder. Whether it’s the stares, the silence, or the disconnection from friends, Bo Bigelow opens up about the challenges and offers insights to help you find connection and community in unexpected places.

Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents

Nov 05 2024 14 mins  
As a parent of a child with a rare disease, you’re constantly on the go, but neglecting self-care can leave you feeling drained and unable to give your best. In this episode, we address this challenge with real-life strategies for reclaiming even the smallest moments for yourself.

Building Your Child's Dream Team: Navigating Therapies for Rare Diseases

Oct 29 2024 15 mins  
In this episode, we’ll discuss practical solutions to the complex challenges parents of children with rare disorders face, from managing occupational, physical, and speech therapies to building a team that truly supports your child’s unique needs.

Stronger Together: Aligning with Your Partner on the Rare Disease Journey

Oct 22 2024 16 mins  
This episode dives into a common but unspoken challenge many parents face: navigating a complex healthcare journey with your partner while maintaining your relationship. If you're feeling isolated, overwhelmed, or unsure how to stay united under the strain of constant caregiving, this episode offers clarity and hope.

Tech Solutions for Easier Communication: Helping Your Neurodiverse Child Express and Self-Soothe

Oct 15 2024 16 mins  
Managing the complex needs of a child with a rare disorder can feel overwhelming, especially when it comes to communication. This episode dives into the use of technology to simplify your life, helping your child express themselves and soothe during sensory overload.

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2

Oct 08 2024 9 mins  
Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overwhelming. This episode is filled with practical strategies that address the difficulties you face on the road, from getting power and internet to breezing through rental car lines.