Struggle Bus Family

Struggle Bus Family
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Struggle Bus Family is a community for and about those with special needs. We talk about our struggles, strives and thrives, and more. Being a parent or caregiver for someone with special needs is HARD and you are not alone. We are real and raw in our support. We work through the sense of isolation and being overwhelmed. Foster a sense of solidarity, share techniques and advice that have helped us and our kids get through the daily struggles of life and achieve some pretty awesome things along the way. Copyright 2025 Struggle Bus Family All rights reserved.

  1. Episode 16: More Than a Label – Defining Intellectual Disability

    05/23/2025

    Episode 16: More Than a Label – Defining Intellectual Disability

    In this episode, Jess and Joni have a conversation about defining intellectual disability. They explore the realities of parenting children with unique needs, the impact of rigid definitions and labels, and the importance of creating inclusive environments. The conversation emphasizes the need for understanding and support, advocating for a shift from a medical model to a social model of disability that recognizes the role of society in accommodating differences. Chapters 00:00 Introduction to Caregiving and Connection 03:18 Struggles of Caregiving 06:18 Understanding Intellectual Disability 09:16 The Role of Labels in Disability 12:05 Social Model of Disability 15:20 Creating Inclusive Environments 16:52 Final Thoughts on Labels and Abilities Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook https://www.facebook.com/strugglebusfamily Copyright 2025 Struggle Bus Family All rights reserved.

    19 min
  2. Episode 15: Pit Stops and Progress

    05/14/2025

    Episode 15: Pit Stops and Progress

    In this episode, Joni and Jess discuss the challenges of caregiving, particularly in the context of their experiences with hospitalization and navigating complex medical needs. They share personal stories about their struggles, strides, and the emotional toll of caring for a medically complex child. The conversation emphasizes the importance of advocacy in healthcare, the lessons learned from recent hospital visits, and the ongoing updates regarding Avery's health and treatment plans. Chapters 00:00 Introduction to Caregiving Challenges 07:35 Lessons Learned from Hospital Experiences 12:39 Transitioning Care and New Medications 18:39 Coping with Stress and Uncertainty 21:19 Navigating Hospital Stresses 24:12 Community Building and Podcast Updates 25:57 Transitioning to New Platforms and Resources 26:07 SBF Intro Outro Glow Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook / strugglebusfamily Copyright 2025 Struggle Bus Family All rights reserved.

    25 min
  3. Episode 14: Chiari Malformation & KDM5C – A Mother’s Fight for Answers | Jess & Joni w/ Lara Erekson

    05/05/2025

    Episode 14: Chiari Malformation & KDM5C – A Mother’s Fight for Answers | Jess & Joni w/ Lara Erekson

    In this heartfelt and informative episode, Jess & Joni welcome Lara Erekson, co-founder of the KARES Foundation (https://kares.foundation) and mother of two daughters, including Whitney, who lives with KDM5C and a history of Chiari malformation. Lara opens up about Whitney’s complex medical journey—from early developmental red flags and severe reflux to her eventual brain surgery and life-threatening complications. The conversation dives into the emotional toll of advocating for a medically complex child, the challenges of navigating rare diagnoses, and the persistent fight for answers and appropriate care. Jess shares parallels with her own experience advocating for her son Avery, who is currently awaiting a neurology consult after a suspected Chiari diagnosis. This episode is a powerful reminder of the resilience of families living with rare disorders and the strength it takes to keep moving forward, one small win at a time. Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook https://www.facebook.com/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c Chapters 00:00 Introduction and Family Dynamics 03:05 Struggles and Triumphs of Parenting 07:32 Understanding Chiari Malformations 16:03 Whitney's Journey with Chiari Malformation 24:31 Navigating Multiple Diagnoses 32:40 Avery's Experience and Future Steps 34:02 Navigating Feeding Challenges 35:59 Understanding Chiari Malformation 40:12 The Emotional Toll of Medical Decisions 43:01 The Complexity of Symptoms 46:45 The Frustration of Medical Communication 50:53 The Importance of Community Support Copyright 2025 Struggle Bus Family All rights reserved.

    53 min
  4. Episode 13: Sibling Stories & Real Talk – A Big Brother's Perspective

    05/05/2025

    Episode 13: Sibling Stories & Real Talk – A Big Brother's Perspective

    In this heartfelt and often hilarious episode, Joni and Jess sit down with a very special guest—Paxton, big brother to Avery—for an honest conversation about what it's like growing up with a sibling who has special needs. From life-saving moments and poop stories (yes, really 😅) to reflections on responsibility, empathy, and love, Paxton shares his unfiltered take on how adoption, caregiving, and being part of a unique family dynamic has shaped who he is. 🎧 Topics we cover: How Paxton felt when he first learned they were adopting Avery What he's learned from living with and helping care for a nonverbal sibling Balancing teenage life with family responsibilities The emotional complexity of fostering and adoption Funny, scary, and tender sibling stories Whether you're a parent, sibling, caregiver, or just someone who values honest family conversations, this episode is full of insight, laughs, and love. 🔔 Subscribe for more stories from the Struggle Bus Family — where we share the real, raw, and resilient moments of caregiving and connection. #StruggleBusFamily #SiblingPerspective #SpecialNeedsParenting #AdoptionJourney #FamilyPodcast #inclusionmatters Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook https://www.facebook.com/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c Chapters 00:00 Introduction and Setting the Scene 00:59 Adoption Journey and Initial Feelings 02:30 Learning and Communication with Avery 05:24 Managing Responsibilities and Overwhelm 08:28 Changing Perspectives on Special Needs 11:17 Memorable Experiences and Wins 13:59 Final Thoughts and Reflections 16:29 SBF Intro Outro Glow Text.mp4 Copyright 2025 Struggle Bus Family All rights reserved.

    17 min
  5. Episode 11: Building Inclusive Communities & Communication In Care

    04/13/2025

    Episode 11: Building Inclusive Communities & Communication In Care

    Jess, Joni, and their guest Bethany discuss the importance of inclusive communication and care in education, particularly for children with special needs. They explore the definition of inclusion, successful strategies for fostering inclusive environments, and the significance of early intervention. The discussion also highlights the need for adaptive playgrounds and thoughtful planning for field trips to ensure all children can participate meaningfully. The conversation concludes with personal reflections on struggles and successes in advocating for children with special needs. Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook https://www.facebook.com/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c Chapters 00:00 Introduction and Background 01:51 Understanding Inclusion 03:48 Strategies for Successful Inclusion 10:48 Collaboration Between Medical and Educational Teams 14:50 Field Trips and Inclusion Challenges 15:54 Navigating Parental Communication 16:38 Inclusive Education and Field Trips 17:39 Creating Adaptive Playgrounds 19:01 The Importance of Inclusive Play Spaces 21:45 Swimming Lessons for Children with Disabilities 23:55 Building Community Support 28:16 Humanizing Educators and Building Relationships 30:39 The Role of Early Intervention 36:04 Awareness of Early Intervention Services 39:18 Struggles and Triumphs in Parenting Copyright 2025 Struggle Bus Family All rights reserved.

    46 min
  6. Episode 10: Eva’s Cholesteatoma Update – How It’s Going...

    03/30/2025

    Episode 10: Eva’s Cholesteatoma Update – How It’s Going...

    Joni and Jess discuss the ongoing medical journey of Joni’s daughter who has been diagnosed with recurring and aggressive cholesteatoma. They explore the implications of the condition, the necessity of surgeries, and the emotional and physical impacts on Joni’s daughter. The discussion also touches on the challenges of explaining medical procedures to a child, the importance of monitoring this condition, and the options available for future surgeries. Throughout the conversation, they emphasize the resilience of Joni’s daughter and the support of their community. Part 1 of Eva's Story in Episode 7: F@#$ Cholesteatoma https://youtu.be/cqJ-EGOI3Ec Part 2 Full Video: https://youtu.be/cqJ-EGOI3Ec Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook https://www.facebook.com/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c #cholesteatoma Chapters 00:00 Introduction to Cholesteatoma 01:16 Understanding Cholesteatoma and Its Impact 04:37 Surgical Interventions and Their Consequences 10:16 Recovery and Coping Mechanisms 16:10 Monitoring and Future Considerations 21:22 Surgical Options and Decision Making 24:51 Struggles and Strives in Parenting Copyright 2025 Struggle Bus Family All rights reserved.

    31 min

  7. 03/26/2025

    Episode 9: The Golden Ticket

    Jess and Joni open up about their own journeys with autism diagnoses and what it’s really like trying to get the right support. They talk about how an autism diagnosis can sometimes feel like a “golden ticket” to services, but also how hard it is to actually navigate the system. The conversation touches on how every kid is different, and why care needs to be tailored, not one-size-fits-all. Episode 9 full video: https://youtu.be/iTp1LRHPCZ8 Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c Chapters 00:00 Introduction and Personal Updates 01:41 Understanding Autism as a Gateway Diagnosis 07:22 The Importance of Diagnosis for Accessing Services 11:34 Navigating Therapy and Support for Children 18:39 The Debate on Overprescribing Diagnoses 20:56 Conclusion and Call for Community Input Copyright 2025 Struggle Bus Family All rights reserved.

    24 min

  8. 03/26/2025

    Episode 8: Jess’s Journey: Raising Avery with a Rare Genetic Disorder

    Jess opens up about her journey as a mom to Avery, who has a rare KDM5C genetic variant. She talks about the challenges of getting a diagnosis, the realities of foster care and adoption, and why early intervention and medical resources matter. She shares both the struggles and the joys of raising a child with special needs, highlighting the role of communication tools and a strong support system in Avery’s development. Episode 8 full video: https://youtu.be/4MPp-Si0GC4 Website https://strugglebus.family Newsletter https://newsletter.strugglebus.family Facebook Support Group https://www.facebook.com/groups/strugglebusfamily #strugglebusfamily #aac #proloquo2go #specialneeds #parenting #nonspeaking #kdm5c Chapters 00:00 Avery's Journey: From Adoption to Diagnosis 06:19 Navigating Medical Challenges and Care Coordination 11:41 The Impact of Genetic Testing on Treatment 17:24 Reflections on Parenting a Child with KDM5C Copyright 2025 Struggle Bus Family All rights reserved.

    18 min
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About

Struggle Bus Family is a community for and about those with special needs. We talk about our struggles, strives and thrives, and more. Being a parent or caregiver for someone with special needs is HARD and you are not alone. We are real and raw in our support. We work through the sense of isolation and being overwhelmed. Foster a sense of solidarity, share techniques and advice that have helped us and our kids get through the daily struggles of life and achieve some pretty awesome things along the way. Copyright 2025 Struggle Bus Family All rights reserved.

Information

  • Creator
    Struggle Bus Family
  • Years Active
    2K
  • Episodes
    15
  • Rating
    Explicit
  • Copyright
    © Struggle Bus Family
  • Show Website
    Struggle Bus Family
  • Provider
    Joni Chu