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What happens when a child experiences seizures, tics, weakness, paralysis or persistent pain—but hospital tests do not reveal an identifiable medical cause?
That does not mean the symptoms are imagined or that nothing is wrong.
In this episode of Early Intervention Matters, Dr Inyang Takon speaks with child and adolescent psychotherapist Sagal Hassan about Functional Neurological Disorder, commonly known as FND, and related functional somatic symptoms in children and young people.
FND can be frightening and confusing for children, families, schools and healthcare professionals. A young person may experience real, disabling physical symptoms while repeatedly being told that their medical tests are normal. This can leave families feeling dismissed, anxious and unsure about what to do next.
Sagal explains the important relationship between physical symptoms, emotional wellbeing and chronic stress—without reducing the condition to being “all in the child’s mind.” She and Dr Takon also explore why adolescence can be a particularly vulnerable time and the crossover between FND, neurodivergence, anxiety and school attendance difficulties.
In this episode, we discuss:
* How FND can present in children and teenagers
* Seizure-like episodes, tics, weakness, paralysis, fatigue and persistent pain
* Why normal test results do not mean that the symptoms are not real
* The relationship between physical symptoms and emotional wellbeing
* FND in autistic and ADHD young people
* Why some young people suppress or struggle to identify emotional distress
* The impact of repeated medical investigations and feeling disbelieved
* Why psychological support should be introduced early
* Supporting children who are struggling to attend school
* The importance of flexibility, routine and maintaining some normality
* How parents, schools and healthcare professionals can work together
* What can help a child or young person move towards recovery
ABOUT SAGAL HASSAN
Sagal Hassan is an ACP-registered Child and Adolescent Psychotherapist. She works with children, teenagers and families experiencing neurodivergence, chronic health conditions, functional symptoms, school attendance difficulties and complex emotional challenges.
She works at The Soke in Chelsea and also has an independent child and adolescent psychotherapy practice.
CONNECT WITH SAGAL
Website:
https://www.sagalhassan.co.uk/
Child and Adolescent Psychotherapist & Consultant
Sagal Hassan Child & Adolescent Psychotherapy
Highgate | Online | Harley Street
E: [email protected]
W: sagalhassan.co.uk
LinkedIn: linkedin.com/in/sagalhassan
________________________________________________________________
ABOUT EARLY INTERVENTION MATTERS:
Hosted by Dr. Inyang Takon, Consultant Neurodevelopmental Paediatrician, UK. New episodes weekly.
Website: www.drtakon.com
General Information for Parents www.school-doctor.com
Questions? Email Us at [email protected]
Guest enquiries: [email protected]
Connect on LinkedIn:
https://www.linkedin.com/in/inyang-takon-paeds/
Substack Articles:
https://neuropaeddoc.substack.com/ (Ask a Developmental Paediatrician)
and
https://braindiverse.substack.com/
_____________________________________________________________
If you found this conversation helpful, subscribe to Early Intervention Matters, leave a review or comment, and share the episode with another parent, educator or healthcare professional.
This episode is for general educational purposes and is not a substitute for individual medical advice, diagnosis or treatment.
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
Host: Dr. Inyang Takon
Guest: Dr. Norrine Russell
Podcast: Early Intervention Matters
ABOUT THIS EPISODE
In this episode, Dr. Inyang Takon sits down with Dr. Norrine Russell, founder of Russell Coaching for Students, to unpack a critical distinction that many parents and professionals miss: the difference between coaching and therapy for neurodiverse children.
If you’ve ever wondered whether your child needs therapy, coaching or something else entirely, this conversation offers clarity, reassurance and a practical framework for thinking about executive functioning and skill development.
“Pills don’t give skills” is more than a catchy phrase—it’s a philosophy that has shaped Dr. Russell’s work with hundreds of neurodiverse students and their families.
Whether your child has been diagnosed with ADHD, autism or a learning difference—or you’re navigating concerns and wondering where to turn—this episode will help you understand what kind of support can make a meaningful difference.
WHAT WE COVER IN THIS EPISODE
• Dr. Russell’s journey—from nonprofit youth work and academia to founding Russell Coaching in 2009, and how raising two neurologically atypical children shaped her approach.
• Coaching versus therapy—the fundamental distinction: coaching focuses on building skills rather than treating mental health diagnoses, and why understanding this matters when choosing support.
• Executive functioning explained—what it means to be “the CEO of your life” and why these skills are essential for self-regulation, independence and long-term success.
• The role of medication—how medication can reduce symptoms but does not teach skills, and why medication and coaching may both be needed while serving fundamentally different purposes.
• When to seek an evaluation for ADHD or autism—practical guidance on recognising the signs and advocating for early assessment.
• Parent advocacy and empowerment—why parents should trust their instincts, advocate for early evaluation and recognise the relief that can come from understanding their child’s neurodiversity.
• The age range for coaching—when coaching support can begin and how it evolves as children grow.
ABOUT THE GUEST
Dr. Norrine Russell is the founder of Russell Coaching for Students, based in Tampa, Florida.
With a background in youth development and education, and years of work at nonprofits serving children and families, Dr. Russell built her coaching practice around a simple but powerful idea: smart, capable children are too often written off by schools, paediatricians and sometimes their own parents—when what they actually need is a coach who understands how their brain works.
Founded in 2009, Russell Coaching provides executive functioning coaching for neurodiverse students with ADHD, autism, anxiety and learning differences.
Dr. Russell has held faculty positions at the University of Tampa, Eckerd College, Sweet Briar College and the University of Minnesota–Morris. She also consults with schools across the United States on supporting atypical learners.
She is the parent of two neurologically atypical children—an experience that deeply informs her coaching philosophy.
RESOURCES MENTIONED
Russell Coaching
Dr. Norrine Russell’s executive functioning coaching practice for neurodiverse students.
Website: http://russellcoaching.com
Email: [email protected]
Office: 212-716-1161
Direct: 813-508-2367
CONNECT WITH DR. NORRINE RUSSELL
Website: http://russellcoaching.com
Email: [email protected]
LinkedIn: https://www.linkedin.com/in/norrine-russell-820545184/
Instagram: https://www.instagram.com/russellcoachingllc/
Facebook: https://www.facebook.com/drnorrinerussell
YouTube: https://www.youtube.com/channel/UCMIal1N_IkKN1a87Sdx_g5w
SUBSCRIBE, REVIEW AND SHARE
If this episode resonated with you, please subscribe to Early Intervention Matters wherever you get your podcasts, leave a review and share it with another parent, educator or professional who might benefit.
Your support helps us reach more families navigating the neurodiversity journey.
_____________________________________________________________________
ABOUT EARLY INTERVENTION MATTERS:
Hosted by Dr. Inyang Takon, Consultant Neurodevelopmental Paediatrician, UK. New episodes weekly.
Website: www.drtakon.com
Connect on LinkedIn:
/ inyang-takon-paediatrician-co-founder-scho...
Subscribe to Ask a Developmental Paediatrician:
https://neuropaeddoc.substack.com/
Read our SUBSTACK Articles: https://braindiverse.substack.com/
for Short Simple Smart tips for parents, health professionals
Guest enquiries: [email protected]
__________________________________________________________________________
DISCLAIMER
This episode is for educational and informational purposes only and does not constitute medical or clinical advice. Always consult a qualified professional regarding your child’s specific needs.
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
In this episode of Early Intervention Matters, Dr. Inyang Takon welcomes Craig Parks, founder of Parenting Harmony, camp director and children’s musician with more than 30 years of experience working with children and families.
Craig shares his personal journey of raising a son on the autism spectrum and explores how music, simple rituals and everyday presence can help parents build stronger connections with their children.
He also introduces the Parenting A to E Method, a practical framework designed to help parents reduce stress and create more joy at home. From using music as a tool for communication to finding screen-free ways to turn ordinary moments into meaningful memories, Craig offers warm, practical ideas that families can begin using straight away.
In this episode, we discuss:
About Craig Parks
Craig Parks is the founder of Parenting Harmony. He is a camp director, children’s musician, speaker and father of two, including a son on the autism spectrum.
Craig has spent more than 30 years working with children and families. Through the Parenting A to E Method, original music and play-based strategies, he helps parents reduce stress, strengthen connection and create everyday moments their children will remember.
Resources and contact
Parenting Harmony website (books, courses, blogs, and more can be found at:
https://www.parentingharmony.com
Email Craig:
[email protected]
If you enjoyed this episode, subscribe to Early Intervention Matters on your favourite podcast platform, leave a review and share it with a parent who might find it helpful.
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
Dr. Inyang Takon and Dr. Gbemisola Boyede discuss the systemic, cultural, and resource barriers facing neurodivergent children and their families in Nigeria and across Africa, and the grassroots innovations, advocacy, and community-led approaches creating real progress.
In Nigeria, a mother whose two-year-old isn't speaking is likely to hear: "He's a boy, he'll talk when he's ready." Then she visits her mother: "This child needs prayers." Then the pastor: "There's a spirit on this child." And in the middle of all of it, she is left entirely alone.
This is not a rare story. It happens every day - in Lagos, in Abuja, in Kano, in Port Harcourt, and in Nigerian diaspora homes around the world.
In this episode, Dr. Inyang Takon is joined by Dr. Gbemisola Boyede - neurodevelopmental paediatrician, founder of Ask The Paediatricians Foundation, and NHS Community Paediatrician - for a rich, honest, and deeply hopeful
conversation about what it means to raise a neurodivergent child in Nigeria today.
KEY TAKEAWAYS:
Two Nigerian-trained UK-based paediatricians both carry a sense of responsibility to the children they left behind. That commitment to reach back across distance and difference is at the heart of this episode.
ABOUT DR. GBEMISOLA BOYEDE:
Dr. Gbemisola Boyede is a Consultant Neurodevelopmental Paediatrician and Founder/CEO of Ask The Paediatricians Foundation: a registered NGO started as a Facebook group in 2015 to reduce preventable child deaths in Nigeria. She
completed her MPhil in Developmental Paediatrics with distinction at the University of Cape Town, and currently works as a Community Paediatrician with Wye Valley NHS Trust in the UK.
CONNECT WITH DR. BOYEDE:
Website: https://www.askthepaediatricians.com
Facebook: https://www.facebook.com/askthepaed /
Instagram: https://www.instagram.com/askthepaediatricians/
Podcast: https://anchor.fm/gbemisola-boyede
LinkedIn: https://www.linkedin.com/company/ask-the-paediatricians-foundation/YouTube (ATP TV): https://www.youtube.com/channel/UCgivTyQm3zz5cwm-f7pmmIw
ABOUT EARLY INTERVENTION MATTERS:
Hosted by Dr. Inyang Takon, Consultant Neurodevelopmental Paediatrician, UK. New episodes weekly.
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
Dr. Inyang Takon and Carol Waldman discuss the critical gaps in support for autistic young adults transitioning from education to employment and independence, and how parent advocacy and legislation can help close them.
Every parent of a neurodivergent child knows the dread of what's coming: the moment at eighteen when the services, the support structures, and the familiar systems suddenly fall away.
What happens next is often left to parents to figure out alone.
In this episode, Dr. Inyang Takon speaks with Carol Waldman, founder of The Waldman Way and neurodiversity advocate, whose son Andrew was diagnosed with autism aged five. Carol takes us through 24 years of navigating IEPs,
schools, therapies, setbacks, and ultimately, Andrew's graduation with honours from the University of Wisconsin-Madison.
Now she's turning that hard-won experience into legislation and resources for families who come after her.
KEY TAKEAWAYS:
ABOUT CAROL WALDMAN:
Carol Waldman is a mother of three and the Founder of The Waldman Way, a platform supporting neurodivergent young adults as they navigate the transition from education to employment and independence. She helped pass neurodiversity hiring legislation through the San Diego County Board of Supervisors in 2022 and is an elected Executive Board Member and State Delegate to the California Democratic Party.
She is also writing her memoir about raising Andrew.
CONNECT WITH CAROL:
Website: https://www.thewaldmanway.org/
LinkedIn: linkedin.com/in/carol-waldman-5b390618
Instagram: @thewaldmanway
Facebook: https://www.facebook.com/profile.php?id=61583431180112
ABOUT EARLY INTERVENTION MATTERS:
Hosted by Dr. Inyang Takon, Consultant Neurodevelopmental Paediatrician, UK. New episodes weekly.
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
For many autistic young people, turning 18 means one thing: the end of support. The services, the structure, the familiar professionals? Gone. Left with a piece of paper for vocational rehabilitation and a world that was never designed with
them in mind.
In this episode, Dr. Inyang Takon speaks with April Ratchford, autistic occupational therapist and host of the global recognised Adulting with Autism podcast. A mum of an Autistic son herself, she discusses what it really looks like to support autistic people through adulthood.
April's story is disarmingly honest, practically grounded, and full of hard-won wisdom.
KEY TAKEAWAYS:
ABOUT APRIL RATCHFORD:
April Ratchford is an autistic occupational therapist with nearly 30 years of healthcare experience and the host of the globally recognised Adulting with Autism podcast (250+ episodes). As both a clinician and the mother of an autistic adult son, April offers a unique blend of professional expertise and lived experience.
CONNECT WITH APRIL:
Website: https://www.adultingwithautism.com/
Podcast: https://anchor.fm/adultingwithautism
Instagram: https://www.instagram.com/adulting_autism/
Facebook: https://www.facebook.com/profile.php?id=61571440840115
ABOUT EARLY INTERVENTION MATTERS:
Hosted by Dr. Inyang Takon, Consultant Neurodevelopmental Paediatrician, UK. New episodes weekly
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
What does it really feel like to grieve a future that hasn't happened yet?
For parents of neurodivergent children, the moment of diagnosis can trigger a profound and often invisible grief... one that doesn't end, but ebbs and flows
throughout their parenting journey.
In this episode, Dr. Inyang Takon is joined by Lynn Banis, grief mentor and founder of Women Rising Together. They explore the emotional landscape of neurodivergent parenting.
Lynn shares her own experience of successive personal bereavements, and how that shaped her approach to helping others walk through loss rather than around it.
Together, they discuss chronic sorrow, self-limiting beliefs, the dangerous myth of 'staying strong', and what it genuinely looks like to build a new chapter of life after everything changes.
If you're a parent, carer, or professional supporting families of neurodivergent children, this episode offers rare honesty, practical wisdom, and real hope.
About our Guest:
Lynn Banis is an expert transformational coach, grief mentor, international bestselling author, speaker, and founder of Women Rising Together. She supports women navigating loss, identity shifts, career disruption, and other life changes,
helping them move forward with greater clarity, resilience, and purpose.
Through coaching, leadership work, and community building, Lynn creates safe, supportive spaces where women can reflect, reconnect with themselves, and
find a steadier path forward.
CONNECT WITH LYNN:
Website: https://womenrisingtogether.org/
LinkedIn: https://www.linkedin.com/in/lynn-banis-36987b2aa
Instagram: https://www.instagram.com/banislynn/
RESOURCES MENTIONED:
Women Rising Together: https://womenrisingtogether.org/
Podmatch (podcast guesting platform): https://www.podmatch.com/
ABOUT EARLY INTERVENTION MATTERS:
Early Intervention Matters is hosted by Dr. Inyang Takon, Consultant Neurodevelopmental Paediatrician, based in the United Kingdom.
New episodes every week.
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
Dr. Inyang Takon welcomes Dr. Evan Nadler, an internationally recognised paediatric surgeon and childhood obesity specialist, for an honest conversation that challenges many of the assumptions surrounding childhood obesity.
Drawing on more than two decades of clinical experience, Dr. Nadler explains why obesity should no longer be viewed as a personal failure or lack of willpower.
The discussion explores why many families become trapped in an exhausting cycle of diet and exercise programmes that produce limited long-term results, often leaving parents feeling blamed and children feeling ashamed.
The episode goes on to explore obesity in children with neurodevelopmental differences, who often face additional barriers to receiving appropriate treatment. Dr. Nadler explains why obesity should not be placed on the "back burner" while other conditions are managed, but instead addressed alongside them through multidisciplinary care and shared decision-making with families.
Rather than advocating a single treatment, Dr. Nadler presents a balanced discussion about lifestyle interventions, medications, and bariatric surgery, emphasising that the best approach depends on the individual child and should always involve informed family choice—not paternalistic medicine.
Whether you're a parent, healthcare professional, educator, or policymaker, this conversation will challenge long-held beliefs and encourage a more compassionate, evidence-based approach to supporting children living with obesity.
00:00 Introduction to Early Intervention Matters Podcast
02:39 The Growing Concern of Childhood Obesity
04:40 Understanding the Challenges in Treating Obesity
08:16 The Importance of Medical Intervention
11:31 The Complexity of Childhood Obesity
15:06 The Psychological Impact of Obesity on Children
17:24 Stigmatisation in Medical Settings
18:57 Defining Obesity as a Disease
22:17 The Urgency of Addressing Childhood Obesity
Evan P. Nadler MD served as Co-Director of the Children’s National Obesity Programs and Director of the Child and Adolescent Weight Loss Surgery Program at Children’s National Hospital from 2009 until 2023. He was also a tenured Associate Professor of Surgery, and Pediatrics, at The George Washington University School of Medicine & Health Sciences and continues there as an Adjunct Associate Professor. His current pursuits include pediatric obesity treatment program development, authoring a book on obesity, and educating the public about obesity via his YouTube channel, website, and media appearances. Dr. Nadler is an international leader in the field of child and adolescent obesity, has authored multiple publications and textbook chapters on the topic of pediatric bariatric surgery, and was one of the founding members of the Childhood Obesity Committee of the American Pediatric Surgery Association.
Obesity Explained | Evan P Nadler MD, MBA
www.youtube.com/@obesityexplained
Evan Nadler MD, MBA | LinkedIn
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
Dr. Inyang Takon is joined by Dr. Albert Bramante to explore the powerful connection between neurodiversity, mindset, self-esteem, emotional development, and the invisible "scripts" that shape how children see themselves and the world around them.
Together, they discuss how children begin forming beliefs about themselves before the age of eight and how those beliefs can influence confidence, behaviour, academic achievement, relationships, and even future success.
The conversation explores the concept of self-sabotage, why some children struggle despite having great potential, and how parents, educators, and caregivers can help build healthier patterns of thinking.
Dr. Bramand explains why neurodiversity should never be mistaken for a lack of intelligence and why understanding individual processing styles is essential for helping children thrive. The discussion highlights the importance of respectful communication, celebrating strengths, and creating environments where children feel valued and understood.
The episode also tackles some of today's most pressing parenting challenges, including overprotective parenting, emotional coaching, social media's impact on self-esteem, and the growing need for meaningful conversations in an increasingly digital world.
🎯 What You'll Learn
⏱️ Chapters
00:00 Introduction to Neurodiversity and Support
02:00 Understanding Mindset and Self-Sabotage
05:31 The Concept of Personal Scripts
13:26 Neurodiversity and Individual Processing
18:19 Self-Esteem and Its Impact
31:25 Healthy Self-Esteem and Positive Mindset
36:42 Understanding Self-Imposed Limitations
37:57 The Dangers of Overprotective Parenting
40:00 Emotional Intelligence and Coaching Children
43:07 Consequences of Emotional Neglect
45:05 Listening to Children: The Key to Understanding
49:11 The Role of Educators in Child Development
50:56 Navigating Professional Help for Children
55:05 The Impact of Social Media on Self-Esteem
59:58 Engaging in Real Conversations
01:01:10 Encouraging Children to Seek Help
👤 Guest Bio
Dr. Albert Bramante is an American talent agent, performance psychologist, mindset coach, and author. He is best known for blending psychological concepts with career advice to help creative professionals overcome mental blocks.
Resources
Social:
https://www.linkedin.com/in/albertbramante/
https://www.instagram.com/dralbramante
Book:
Rise Above the Script: https://www.amazon.co.uk/Rise-Above-Script-Confronting-Performing-ebook/dp/B0CW19F7WZ
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
In this deeply moving episode of Early Intervention Matters, Dr. Takon speaks with Mike Gomoll, father, advocate, and founder of Joey's Song, about his family's journey through the challenges of Dravet syndrome, a rare and severe form of epilepsy.
Mike shares the emotional rollercoaster of navigating early symptoms, delayed diagnosis, treatment setbacks, and the uncertainty that so many families experience when searching for answers. He offers a candid look at the realities of caring for a child with a complex neurological condition and the profound impact it has on the entire family.
At the heart of this story is Joey—a young man whose love of music became a powerful source of connection, joy, and healing. Following Joey's passing, Mike and his family transformed their grief into purpose by creating Joey's Song, an initiative that has raised millions of dollars for epilepsy research and awareness while bringing together world-class musicians and supporters from around the world.
This episode explores the importance of accurate diagnosis, honest communication between healthcare providers and families, the evolving landscape of epilepsy treatment, and the critical role of community support. It also offers practical advice for parents and caregivers navigating rare diagnoses and highlights the importance of self-care, resilience, and advocacy.
🎯 What You'll Learn
⏱️ Chapters
00:00 Introduction: Mike Gomoll's Story and Family Background
01:31 The Family's Journey from Initial Diagnosis to Advocacy
04:36 Challenges of Navigating Uncertainty Without Diagnosis
07:15 The Impact of Medication and Treatment Missteps
10:23 Understanding Dravet Syndrome and Genetic Aspects
15:07 Joey's Love for Music and His Unique Way of Connecting
19:43 The Passing of Joey and the Family's Grief Process
24:39 Creating Joey's Song to Raise Awareness and Funds
28:23 The Growth of Joey's Musical Legacy and Fundraising Success
30:57 Connecting Through Music and Its Healing Power
35:40 Advice for Families Receiving Devastating Diagnoses
36:32 Supporting Caregivers' Mental Health and Self-Care
40:46 Communicating Effectively with Families About Diagnosis
43:06 The Importance of Community, Family Resilience, and Advocacy
47:22 The Ongoing Legacy of Joey and the Impact of Music in Fundraising
👤 Guest Bio
Mike Gomoll
Mike worked for IBM in several management roles before retiring in 2017. He and his family started Joey’s Song after their 4-year-old son Joe died after a lifelong battle with Dravet Syndrome. Joey’s Song hosts a series of music events to raise funds for cutting-edge research programs, with the hope of improving treatments and possibly finding true cures for those suffering. Joey’s Song events are live streamed worldwide so anyone, anywhere in the world can watch and enjoy.
Mike lives in Sun Prairie, WI, with his wife, Nory, and their two adult children - Julia (26) and Sam (24), living near them.
📚 Resources & Links
https://www.joeyssong.org
https://www.instagram.com/joeyssong
https://www.facebook.com/joeyssong
Support the show
Resources & Connect with Dr. Inyang Takon:
(NEW!): https://braindiverse.org
A Resource Library of tools, tips, tutorials, Apps & Training for Parents, Teachers and Health Professionals
Other links:
Website: https://www.drtakon.com
General Information for Parents and Teachers: https://www.school-doctor.com
LinkedIn: https://www.linkedin.com/in/inyang-takon-paeds/
Instagram: https://www.instagram.com/early_interventionmatters/
Subscribe: https://neuropaeddoc.substack.com/
Read: https://braindiverse.substack.com/
Questions? Email: [email protected]
Guest enquiries: [email protected]
From the publisher's feed
The Early Intervention Matters Podcast is a podcast that informs, inspires and equips parents and professionals who live and work with children with neurodevelopmental difficulties and disabilities…