In this episode of Down Syndrome: 21st Perspectives, we talk with Carly Durham—nurse practitioner, client care manager, and mom of three, including two children with Down syndrome. Carly shares her family’s adoption journey from Ukraine, their experiences navigating complex medical needs, and her work as an advocate helping families understand IEPs and push for inclusion. We also dive into the realities of special education in Texas—from STAAR testing to deciding whether a GenEd classroom is right for your child. This heartfelt and practical conversation highlights the challenges, victories, and everyday pursuit of belonging for every child.Resources that Carly Spoke about:SPEDTX - https://www.spedtex.org/TEA - https://tea.texas.gov/Disability Scoop - https://www.disabilityscoop.com/Texas Council for Developmental Disabilities - https://tcdd.texas.gov/ Disability Rights of TX – https://disabilityrightstx.org/en/home/Federal ARC – ARC.org

On this episode of Down Syndrome 21st Perspectives, Carly Durham shares her journey from adopting a child with Down Syndrome from Ukraine to their experiences navigating complex medical needs, and her work as an advocate helping families understand IEPs and push for inclusion. She talks candidly about IEP meetings and STAAR testing to considerations when deciding if a GenEd classroom is right for your child.  Join us for this heartfelt conversation.

In this inspiring episode, host Anne Lewis speaks with Amber Jackson, a dedicated homeschool educator to Anne’s son, Fritz. Amber shares her journey from early dreams of teaching to founding her own Montessori-inspired, Responsive Classroom-based homeschool. She offers insights into creating emotionally safe, child-centered learning environments and empowering students through independence, routine, and mutual respect. This heartfelt conversation is packed with practical wisdom and encouragement for parents, educators, and advocates seeking to nurture the full potential of every child.Topics discussed include:• Amber’s reasons for saying “yes” to working with Fritz, her belief in his potential, and how she adapts her teaching style to honor his individuality—focusing on curiosity over compliance.• Practical school tools, like using a sand timers for emotional regulation.• Embracing gentle parenting, letting go of perfection, and recognizing that some behaviors are tied to just being a kid.You can find Amber on Instagram - https://www.instagram.com/kweensskorner/Helpful Sections: 9:44 Home school and public school education17:56 On teaching Fritz19:35 On working towards a goal21:10 Do you need a moment? Tactics for handling shut downs....23:50 Realizing this is just kid behavior24:25 Responsive Classrooms27:39 Importance of Learning sounds29:25 "I have to do this" vs "I get to do this"30:40 IXL learning31:56 Math32:34 Comprehension

In this short clip, check out how one teacher is unlocking the joy of reading and learning for Anne's son who was born with Down Syndrome. Our new podcast season begins with a Back-to-School episode, join us on Down Syndrome 21st Perspectives!

In this inspiring episode of Down Syndrome: 21st Perspectives, hosts Anne Lewis and Leigh Frillici welcome Pat Prior Sorrells, President and CEO of Camp For All—a truly barrier-free camp serving children and adults with disabilities, medical challenges, and special needs.Pat shares how Camp For All partners with over 65 nonprofits, including hospitals and condition-specific groups, to provide fully inclusive, customized camp experiences. From ziplining and horseback riding to karaoke and canoeing, every activity is designed to empower campers of all abilities.In this episode you will hear about the camp's profound impact on both children and their families, including a moving story of how one camper’s breakthrough moment helped save his parents’ marriage. Pat also reflects on her own journey as a mother of two sons with learning differences, offering hope, wisdom, and advice to families on similar paths. Learn more about Camp for All here - https://www.campforall.org/Condition specific camps search page - https://www.campforall.org/find-your-...

Join hosts Anne Lewis, Monique Johnson, and Leigh Frillici, as they welcome Laura Elder, co-founder and co-director of Beloved and Beyond, a faith-based, fully inclusive camp that transforms the lives of children and adults with disabilities.Laura passionately shares how the camp embraces campers of every ability—whether they walk, roll, or need extra support—and invites them to experience unforgettable adventures like ziplining, horseback riding, silent discos, and fashion shows. Every camper teams up with a one-on-one buddy, creating powerful friendships that last far beyond camp week.Discover how former campers become leaders through the “Beyond Team,” giving back by volunteering in meaningful ways while gaining life skills and service hours. Laura addresses caregiver concerns head-on, explaining how a skilled medical team supports campers’ unique needs, so families can enjoy a well-deserved break.With no age limit and special weeks for siblings, Beloved and Beyond welcomes all who want to belong, grow, and have fun. Laura warmly invites teens, young adults, and adults to join as volunteers, buddies, or cabin parents. For the summer of 2025, they are especially looking for high school boys who would like to volunteer. To learn more about that skip forward to 12:15-13:30.To learn about the camp: belovedandbeyond.org.

In this special Father’s Day episode of Down Syndrome: 21st Perspectives, hosts Anne Lewis, and Monique Johnson, and Leigh Frillici welcome a deeply personal guest—Anne’s husband, Jake Lewis—for a raw, heartfelt conversation about fatherhood, faith, and the unexpected beauty that comes from life's biggest challenges.

 Jake shares his emotional journey through addiction recovery, receiving a Down syndrome diagnosis for their son, and learning to embrace vulnerability as a father. This episode is a powerful reminder that healing often begins when we let go of control and choose to love, exactly as we are.

Batter up! Little League's Challenger Baseball is an adaptive baseball program that opens the world of baseball to children with disabilities. In this episode, cohosts Monique Johnson and Leigh Frillici welcome Mark Potts, the commissioner of West University's Challenger Baseball Program. Mark shares how the league operates, its inclusive design, and the profound impact it has on children, families, and the broader community. Monique reflects on her personal experience as a coach and parent, highlighting how Challenger Baseball has been transformative for her son Marley and their family.Links:Challenger Baseball - https://www.littleleague.org/play-little-league/challenger/about-challenger/

Monique Johnson and Anne Lewis' daughters share heartfelt stories about growing up with brothers who have Down syndrome. From tech troubles to spontaneous dance parties, they reflect on how their brothers have shaped their empathy, sense of responsibility, and future goals. Their moms join in to talk about the journey from fear to pride, and why this unique path is full of unexpected gifts. It's an episode for anyone who has a child or sibling with a disability - highlighting family life and the beauty of sibling bonds.

In this inspiring episode, Geralyn Spiesz, OT and founder of the Down Syndrome Action Plan, shares her journey from a Down syndrome diagnosis of her child in 2007 to becoming an advocate for brain-based, individualized support for children with Down syndrome. Drawing from her work as an occupational therapist and her personal experience as a mom, Geralyn breaks down the powerful, neurodevelopmental methods that helped her son—and many others—thrive.

Highlights include:

• (1:20) Why traditional therapies felt limiting—and what Geralyn did differently

• (9:40) How a simple log roll (13:17) and other movements can help reflexes and the brain’s incredible potential for growth

• (13:45) Why crawling and trunk rotation are musts for brain development

• (18:00) Stubborn vs. Independent - motivating and encouraging learning

• (22:53) Rethinking reading, testing, and school: challenges and strategies to tailor learning to your child

• (33:04) Geralyn talks about the successes and challenges for her high school son.

Plus, hear powerful stories about other parents who’ve challenged conventional thinking and seen their children flourish. The episode concludes with a powerful reminder: with love, creativity, and trust in the learning process, children with Down syndrome can achieve remarkable things.

Resources:

Geralyn's FB group - dsactionplan.com

Geralyn's book - Redefining the Reality of Down Syndrome: The Power of an Integrative Mindset

Family to Family Network’s Executive Director, Mary Jane Williams joins us to talk about navigating education and support systems for individuals with disabilities. The discussion includes navigating medical and special education services, the waitlist crisis for services for 18 and over, how to potentially extend health insurance for your adult child and the complexities of guardianship and supported decision making.Family to Family Network - F2FN.org

Phone: 713 466-6304

In this podcast we explore advocacy for children with special needs. Our special guest, Jane Friou, is on the Board of the Down Syndrome Association of Houston. Jane is the mother of an 18-year-old with Down syndrome and she has become a passionate advocate for individuals with intellectual and developmental disabilities. She shares her personal journey, from navigating early challenges to becoming a force for systemic change in education and healthcare. The discussion highlights the importance of parental advocacy, legal safeguards for special education, medical advocacy, and pushing for stronger individualized education plans (IEPs). The episode provides a wealth of resources and strategies for parents looking to navigate and improve the systems that impact their children’s lives.Links to additional content:

Jane's FB page - https://www.facebook.com/p/Houston-Special-Education-Parent-Association-Houston-SEPA-100069315881357/

The book Jane talked about - https://www.disabilityisnatural.com

This episode features a heartfelt discussion about the emotional life of parents of kids with Down Syndrome. Anne and Monique explore their initial fears and anxieties that arose —concerns about their childrens' futures, how life would change, and the struggle with societal perceptions. They also share how they have grounded themselves in hope, love, and the joy their children bring, emphasizing that while the journey may be challenging, it is also incredibly rewarding.

Welcome! In this first episode, we’ll talk about our goals for the podcast and what you can expect. Anne and Monique share their personal stories of learning in the hospital that their baby was born with down syndrome, what they felt, and how they navigated the reactions of others.