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This is a rebroadcast of Episode 130 that was aired back in 2023.

"In this episode, I open up about those moments when everyone assumes you're okay, but inside, you're struggling. It's a common experience, especially for us moms navigating the complexities of raising children with special needs.

I share personal reflections on the internal work required to acknowledge our true feelings and the courage it takes to express them. We delve into the layers beneath the surface and discuss the importance of authenticity in our struggles."

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

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This week, I sat down with Kristin Herzberg Purdy—psychologist, rare disease advocate, and mom of two children with disabilities. KristIn shares her deeply personal story of parenting through autism, epilepsy, and a rare neurodegenerative condition. We talked about the emotional toll of constant caregiving, the push to find answers when the medical system leaves you hanging, and how self-compassion gets complicated when you're stuck in survival mode.

Kristin was so open about what it means to love fiercely while grieving at the same time. We touched on everything from her professional lens as a trauma psychologist to the messy feelings of comparison and guilt that creep in, especially when you’re watching other families do “typical” things.

She's also raising funds for a gene therapy treatment for her son, Paxton, and currently in the quarterfinals of a Supermom contest that could bring in $20,000 toward that effort. She's a powerhouse, and I know you'll be as moved by her.

Connect with Kristin: 

• CureCLCN6.org : Kristin and her husband’s nonprofit
• Contact Kristen: [email protected]
• Vote for Kristin in the Supermom contest! 

Other Resources: 

• UMass Chan Medical School : Partnering for gene therapy development
• Article on Acceptance and Commitment Therapy (ACT)

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

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In today’s episode, I’m sharing some personal reflections about acceptance and the emotions that come with it, especially with my son’s 16th birthday bringing up past challenges. I also share the excitement of an upcoming getaway, thanks to my friend Laura's help—talk about a surprise upgrade!

The highlight of the episode is a powerful Native American story about two wolves fighting inside us—one good, one bad. Which wolf will win? I dive into how this story helped me reflect on where I put my energy and how we often judge ourselves for our emotions. It’s a message you won’t want to miss.

Resources Mentioned:

• Self-Compassion by Kristin Neff

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

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In this episode, I'm joined by Tara Heaton, a writer, speaker, and master storyteller with over 25 years of corporate experience. Tara’s journey took a turn when her daughter, Caroline, developed encephalitis, which led to a seizure disorder and ongoing medical challenges. Tara shares how her career in sales helped her build genuine relationships and how those skills have translated into advocating for her daughter.

We dive into the importance of asking for help, the struggles of balancing motherhood and personal well-being, and the deep emotional journey of accepting the limitations and joys of parenting a child with special needs. Tara’s reflections on shifting from chasing fleeting pleasures to embracing intentional joy are powerful and inspiring.

This episode will leave you with valuable insights on building real connections and finding joy even amid hardship.

Resources Mentioned:

• Life Minutes: Igniting Joy From The Fire of Heartache by Tara Heaton
• Self-Compassion by Kristen Neff

Connect with our guest,  Tara Heaton:

• [email protected]
• IG: @taraheatonauthor
• LinkedIn: Tara Heaton

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

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In this episode, I talk about the sneaky voice of self-judgment that creeps in when we’re feeling inadequate. I share a personal story of how I’ve learned to recognize and deal with these judgmental thoughts, and why it’s important to show ourselves some compassion.

If you've ever felt that nagging doubt about not being good enough, this episode is for you.

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Send us a text

In this episode, I share my concern over the rising division within our special needs community. Recently, I’ve observed two sides clashing—each convinced the other is wrong. This division started with a comment made by the Secretary of Health and Human Services about autism, but what’s more troubling to me is how we’re responding as a community. I’ve seen judgment replacing empathy, and I’m left wondering how we got here.

There’s a lot more to explore, but for now, I want to remind you, together is the only way!

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Send us a text

In this episode, we sit in on the Rare Advocacy Exchange virtual series. Global Genes is hosting this series in an effort to empower rare disease leaders. As moderator, I facilitated a panel that focused on the challenges and rewards of leading in the rare disease space.

The conversation covered the importance of community, collaboration, and using personal experiences to drive change. Panelists shared their journeys of advocacy, highlighting how moments of isolation became opportunities to connect and push for change.

This episode is a must-listen for anyone passionate about rare disease advocacy, offering inspiration and insights for creating meaningful impact.

Episode Resources: 

Parenting Differently When You Expect A Shorter Life with Daniel DeFabio

Global Genes

Global Genes: Rare Advocacy Exchange

Cure DHDDS

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Send us a text

I share a personal story today about my journey with pelvic floor physical therapy, and how I’ve been learning to support myself in ways that match my resistance. After some humorous missteps with scheduling and a lot of self-judgment, I realized that getting the right kind of support—whether it’s a coach, a friend, or even a check-in system—can make all the difference when it comes to sticking with something that feels hard.

I talk about a concept I love: getting support sufficient to your resistance. We often do this for our kids, but how often do we apply it to ourselves? It's about recognizing that resistance isn't a problem, but the lack of the right kind of support is. This episode is all about finding the right tools and structures to help you get where you want to go, without judgment or guilt.

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

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This conversation with Callista Bowes, a therapist, mom, and certified pediatric gentle sleep coach, dives into a reality many special needs parents face—the deep isolation that exists even in a hyper-connected world.

We talk about how social media can create a false sense of connection while leaving parents feeling even more alone. Callista shares her experience navigating loneliness after stepping away from her career following her daughter’s Down Syndrome diagnosis, the struggle to find truly understanding spaces online, and why building in-person support can feel so hard. We also explore the emotional toll of managing constant responsibilities and the fear of judgment that keeps many parents from opening up. If you’ve ever felt unseen or like digital spaces don’t quite meet your needs, this episode is for you.

Books Mentioned:

As Long As You Need: Permission to Grieve by J.S. Park

The Wild Edge of Sorrow. by Francis Weller

Connect with Our Guest, Callista Bowes: 

email: [email protected]

website: A Cherished Night of Sleep

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Send us a text

In this episode, I’m sharing how I’m planning ahead to create a summer that actually works—for me, my family, and especially Levi.

Last summer was rough, so I got intentional about doing things differently this year. I walk you through a six-step process (inspired by my landscape design days!) to create a future you’re excited about—without getting stuck in the “how.”

I cover:

• What worked, what didn’t, and what’s changing
• Why support is key (and why I’m hiring help!)
• How to move forward without overwhelm

Resources Mentioned:

• Oncology and Kids (San Diego-based camp)
• Care.com (for finding caregivers)
• Episode 000: episode title here

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE