Stronger Every Day: For Parents of Children with Rare Diseases

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

What happens when your child with a rare disease reacts unpredictably to a medication meant to help them focus and thrive?

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.

• Understand the complexities of combining anxiety and ADHD treatment with rare disease care.
• Learn why it's crucial to monitor your child's response to new medications.
• Gain reassurance that you're not alone in facing these unpredictable parenting challenges.

Press play to hear this heartfelt episode and gain practical advice for navigating the uncharted territory of rare disease parenting.

ALSO: I'm launching a mobile app to help men connect with each other. The idea is to see our friends more often, and make new friends, too. More information is available here.

SED 514: Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting

What would you do if your child faced anxiety so intense it disrupts their daily life, paired with impulsivity and struggles with focus?

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.

• Discover how anxiety and attention challenges can compound care complexities for children with rare conditions.
• Learn about the tools and assessments we're using, like the NICHQ Vanderbilt Scale, to better understand these behaviors.
• Gain practical insights for managing impulsivity and staying resilient as a caregiver.

Hit play now to hear this heartfelt first part of Tess's story and take away valuable tips to support your own caregiving journey.

ALSO: I'm launching a mobile app to help men connect with each other. The idea is to see our friends more often, and make new friends, too. More information is available here.

Breaking Through Isolation: Finding Connection as a Rare Disease Parent

Have you ever felt isolated, like no one around you understands the unique struggles you're facing? For parents of children with rare diseases, this feeling can be a daily reality.

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.

1. Discover practical ways to shift your mindset and bring supportive people into your life.
2. Hear about the new project designed to tackle social isolation for rare disease parents and others.
3. Learn why vulnerability with the right people can be a powerful tool for building meaningful connection.

Press play to learn how to create a circle of support and begin tackling the isolation of rare disease parenting.

SED 512: Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents

Ever feel like you're running on empty, with no time to refuel? What if you could recharge without needing hours to yourself?

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.

By tuning in, you'll discover why prioritizing self-care is essential for your wellbeing, simple but powerful ways to manage stress and cortisol, and how brief, consistent habits can transform your energy and focus.

Take a few minutes to start building your recharge routine—listen to the episode now to reclaim your energy without sacrificing precious time.

NSDR (Non-Sleep Deep Rest) with Andrew Huberman on YouTube

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

Are you feeling overwhelmed by the countless therapies and appointments involved in caring for your child with a rare disease?

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.

• Learn how to maximize the benefits of essential therapies like OT, PT, and speech for your child.
• Discover how to create a "dream team" of therapists and specialists who are fully invested in your child's progress.
• Gain the mindset tools necessary for collaborating with your child's therapy team without feeling overwhelmed.

Hit play now to find out how to ease the heavy load of caregiving while ensuring your child gets the best possible support!

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

Are you and your partner truly aligned when it comes to supporting your child with a rare disease, or are you struggling to get on the same page?

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.

• Discover why getting aligned with your partner about your child's rare disease is crucial for both your family's well-being and your own peace of mind.
• Learn practical strategies for making time to reconnect with your partner amidst the chaos of caregiving.
• Hear real-life stories and actionable advice on how to overcome common pitfalls that strain relationships in families dealing with rare diseases.

Tune in now to find out how you can strengthen your relationship and work as a team while managing the challenges of rare disease caregiving!

Stronger Every Day: For Parents of Children with Rare Diseases - Ep 509 - Tech Solutions for Easier Communication: Helping Your Neurodiverse Child Express and Self-Soothe

Have you ever struggled to find the right tech tools to help your neurodiverse child?

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.

-Learn about different communication devices and techniques that can improve how your child communicates with you and others. -Discover a free, customizable resource you can create to help calm and soothe your child in any environment. -Gain practical insights into building a free, personalized playlist of sounds and videos that work for your child's specific needs.

Don't miss out—listen now to equip yourself with easy-to-implement tools that can make a real difference for you and your child!

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

Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?

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.

- Adjust your mindset about power and internet, so you're ready for anything when you need to get work done on the road. - Learn about two travel programs that can save you time and money. - Hear about a special kit that I designed to optimize sleep for your whole family when you're away from home.

Tune in now and get the hacks that will transform your next travel experience into a calm and enjoyable adventure!

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2

Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?

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 managing long car rides to breezing through airport security.

- Discover two easy steps to prepare for a smoother trip, no matter what obstacles arise. - Learn about a little-known service that can turn stressful airport experiences into a worry-free process. - Get recommendations for budget-friendly travel products that ease your journey, from driving to flying.

Tune in now and get the hacks that will transform your next travel experience into a calm and enjoyable adventure!

How to Personalize Apple Headphones Using the Mimi Hearing Test App: https://mimi.io/how-to-personalize-apple-headphones-using-the-mimi-hearing-test-app

Unlocking Tess's Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2

Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions?

For parents of children with rare diseases, balancing nutrition while managing symptoms like GERD and eczema can be overwhelming. In this episode, I dive into how we've customized Tess's diet over the years, using scientific research to guide our choices and making practical tweaks to keep her feeling her best.

1. Learn how specific foods, backed by scientific studies, can help manage common symptoms like reflux and inflammation. 2. Discover which simple dietary adjustments can improve digestion and prevent food sensitivities from disrupting daily life. 3. Get practical advice on using nutrient-dense foods and healthy fats to keep your child satisfied and energized longer.

Don't miss out on these essential tips--play this episode now and start optimizing your child's diet today!

SCIENCE!

"Gluten and FODMAP Relationship with Mental Disorders: A Systematic Review" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8228761/ Aranburu E, Matias S, Simón E, Larretxi I, Martínez O, Bustamante MÁ, Fernández-Gil MDP, Miranda J. Gluten and FODMAPs Relationship with Mental Disorders: Systematic Review. Nutrients. 2021 May 31;13(6):1894. doi: 10.3390/nu13061894. PMID: 34072914; PMCID: PMC8228761.

"Vegan Diet and Dermatology: A Review" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10531971/ Lee H, Sim N, Fotouhi A, Daveluy S. Vegan Diet in Dermatology: A Review. J Clin Med. 2023 Sep 6;12(18):5800. doi: 10.3390/jcm12185800. PMID: 37762741; PMCID: PMC10531971.

"Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD)" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11347905/ Khan M, Shah K, Gill SK, Gul N, J JK, Valladares V, Khan LA, Raza M. Dietary Habits and Their Impact on Gastroesophageal Reflux Disease (GERD). Cureus. 2024 Jul 27;16(7):e65552. doi: 10.7759/cureus.65552. PMID: 39192902; PMCID: PMC11347905.