Welcome to Down Syndrome: 21st Perspectives. As mothers of children who have Down Syndrome, Anne and Monique were inspired to create a space to talk authentically about their experiences. Their friend, Leigh, joins them as a cohost and executive producer. The podcast name says it all: A perspective is “a particular way of thinking about or viewing something, influenced by one's experiences and beliefs”. It is our hope that our listeners will be inspired to share their experiences; engage in our community; raise awareness, and create connections and opportunities for advocacy. Join us!
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Episode 14 FULL - Living in the "And" with Jillian Benfield (00:34:55)
In this powerful episode of Down Syndrome: 21st Perspectives, hosts Anne Lewis and Leigh Frillici speak with journalist and author Jillian Benfield about her newest book Overwhelmed and Grateful as well as her first book The Gift of the Unexpected. Jillian shares her transformative journey after receiving a prenatal Down syndrome diagnosis for her son from sadness to growth, advocacy, and profound love.In our conversation, Jillian explores the emotional impact of a diagnosis, navigating medical and school systems, and the daily realities of raising a child with Down syndrome. She also dives into the concept of living in the AND—holding both the challenges and the beauty of disability parenting.For anyone seeking a deeper understanding of the Down syndrome community, join us for Jillian’s remarkable story and her reminder that joy and hardship can coexist.
Episode 14 Trailer - On Living in the "And" - Author Jillian Benfield (00:00:31)
Former TV journalist Jillian Benfield joins Anne Lewis and Leigh Frillici to share her powerful story of raising a child with Down Syndrome. Jillian opens up about her journey from grief to gratitude, and shares the lessons she wrote about in her new book Overwhelmed and Grateful. An honest, heartfelt conversation about finding purpose and beauty in life’s hardest surprises.Watch the whole episode here:
Episode 13 Sneak Peak - Empowering Kids with IDD to Dance (00:00:40)
New Episode Alert! Empowering Kids with IDD to Dance - Cammie O'Hara shares the joy of teaching her students with IDD how to dance and how her Empower Dance Group performs at some big venues! No matter where you are in the country, learn more about how you can join her virtual dance class.
Episode 13 - Empowering Dancers One Step at a Time (00:19:25)
In this uplifting episode of Down Syndrome: 21st Perspectives, hosts Monique Johnson and Leigh Frillici welcome Cammie O’Hara, owner of The Dance Pointe, a studio dedicated to providing inclusive dance classes for individuals of all abilities. Cammie shares how her lifelong love of dance—and a gentle push from her daughter—sparked the creation of adaptive classes where students with Down Syndrome, Autism, Cerebral Palsy, and other disabilities can thrive. Her classes blend contemporary, ballet and lyrical styles, often set to Disney or popular songs that invite creativity, emotional expression, and joy. And...her classes are going virtual so kids with IDD across the country can take dance with her.You can learn more about The Dance Pointe here - https://thedancepointetx.com/
Episode 12 - The Journey to Adoption and Advocacy (00:40:33)
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
Episode 12 Trailer - A Journey from Adoption to Advocacy (00:00:39)
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.
Episode 11 - Queen of Connection - On Reading and Responsive Classrooms (00:35:19)
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
Episode 11 Trailer - On Reading and Responsive Classrooms (00:00:35)
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!
Episode 10 - Camp for All: Where Barriers Disapear (00:25:47)
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-...
Episode 9 - Beloved and Beyond Camp (00:26:03)
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.
Episode 8: Father's Day - We're going to love him... (00:49:32)
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.
Episode 7: Batter up! West U. Challenger's Baseball (00:25:32)
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/
Episode 6: My Little Brother Has Down Syndrome (00:47:04)
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.
Episode 5 - A New Extraordinary (00:47:11)
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.comGeralyn's book - Redefining the Reality of Down Syndrome: The Power of an Integrative Mindset
Episode 4 - Advocacy (00:49:09)
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.orgPhone: 713 466-6304
Episode 3 - Advocacy (00:43:38)
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
Episode 2 - Hope and Resilience (00:46:23)
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.
Episode 1 - Hello! (00:16:18)
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.
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