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PODCAST

Adjusting the Sails

WVU Center for Excellence in Disabilities

Adjusting the Sails is a podcast aimed to discuss the lives and specific challenges children with special health care needs and other disabilities and their families, caregivers, and service providers face, and how to manage those challenges. The podcast will serve as a platform for all disability-related topics to be discussed and as a mediator between families and caregivers to share their stories and experiences. The podcast will feature guest speakers, panelists, and a variety of program

science social sciences

All Episodes

46:39

If You've Met One Person with Autism… Try Meeting...

Adjusting the Sails ·

2025/10/27

When Darice's first son was diagnosed with autism nearly two decades ago, she was handed a label and no support. Today, she's raising two autistic children and is married to an autistic husband, using her insight to balance a household with multiple diagnoses. In this heartfelt and often funny conversation, Darice shares her family's experiences navigating quirky symptoms and school challenges to advocacy, life skills, and celebrating individuality. This episode reminds us that every autistic

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01:02:21

Diagnosis to Determination: A Mother’s Journey with...

Adjusting the Sails ·

2025/10/01

In this moving episode, our guest Aimee shares her family’s journey after learning that her daughter Caroline was diagnosed with Aicardi syndrome, a rare genetic disorder that primarily affects girls. Aimee speaks with honesty and courage as she shares about the shocking moment of diagnosis during a routine anatomy scan, navigating high-risk pregnancy appointments, and the overwhelming mix of fear and gratitude when Caroline finally came home from the hospital. She discusses the challenges, the

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47:04

Weylon the Warrior: A Mother’s Journey Through...

Adjusting the Sails ·

2025/08/29

When Gennifer and her husband got a late-night call about an unexpected baby, they had no idea it would lead them to a life filled with challenges, resilience, and unconditional love. In this heartfelt episode, Gennifer shares the powerful story of adopting her son Weylon, born with a brain injury and complex medical needs. From navigating seizures and hospital stays to building a strong family bond and advocating fiercely for his care, Gennifer opens up about the realities of raising a child with

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01:17:08

The Weight of Grief: Life After Hadleigh - Samantha...

Adjusting the Sails ·

2025/07/01

**Content warning: episode discusses child loss.** In this powerful episode, Samantha Coyne—WVU Law student, LEND trainee, and devoted mother—shares the story of her daughter Hadleigh, whose life and unexpected passing reshaped Samantha’s entire sense of identity and purpose. From a complicated pregnancy and a rare diagnosis of Noonan syndrome to joyful moments of motherhood and exhausting advocacy, Samantha takes us on a journey of love, loss and resilience. She opens up about the isolation,

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55:05

When the Pilot Is Mom: Steering Through Crisis and...

Adjusting the Sails ·

2025/06/02

Brandi Williamson, a Parent Network Specialist (PNS) with the WVU CED and mother of four, shares her powerful journey after learning at 23-weeks pregnant that her daughter had spina bifida. What began as a routine ultrasound quickly turned into a life-altering diagnosis, an emergency delivery at 25 weeks, and a crash course in neonatal intensive care. In this episode, Brandi opens up about the emotional and medical turbulence she and her daughter faced, and how she stepped into the role of pilot –

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01:04:31

A Mother's Intuition - Alyssa Flowers, Parent Network...

Adjusting the Sails ·

2025/04/30

CED's Parent Network Specialist (PNS), Alyssa Flowers, is newer on her Autism mom journey with her daughter, Isabella. From infancy, Alyssa felt that something was different about her daughter, but being a new parent, she was led to believe that her intuition was only first time parent anxieties and uncertainty. Five years later, Alyssa's concerns are finally validated and she can seek the support and services her daughter needs and deserves. Parents always know their child best, and a mother should

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33:22

"A Warrior's Mentality"- Harry Psaros, Autism Dad and...

Adjusting the Sails ·

2025/03/17

Harry Psaros discusses his "dAdication" to helping his son with Autism succeed. Who started as a child with significant deficits, limited communication skills, and an uncertain future, Harry took on a "warrior's mentality" and educated himself and his family about how to best serve and raise his son. He sought new therapies and methodologies to help his son better integrate to his environment and improve his communication. Years later, Harry's son is a soon to be college graduate with a bright

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44:55

Climbing the Mountain without a Guide - Dr. Norrine...

Adjusting the Sails ·

2024/11/29

"It feels that you're climbing a mountain, without a guide or a backpack...and some days the sun isn't even shining". - Dr. Norrine Russell discusses her feelings and challenges early on as she navigated life with her two complex children. A lack of support and resources around her led to her founding a local support group in the Tampa Bay area and then to Russell Coaching, for children and young adults with ADHD, Autism, Learning Differences, Anxiety, and Giftedness. For more information about

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52:41

"Where Truett Begins and The Autism Ends" - Courtney...

Adjusting the Sails ·

2024/09/23

Did you know that your Adjusting the Sails Host is also a parent to a child with Autism? She hasn't always looked at her life as a story to benefit other parents. Though she truly believes sharing experiences and being heard and validated in one's parenthood journey is healing for parents of children with special needs, it hasn't always been easy to see herself or story through the same lens as the families she works with every day. Many thanks to the listener that reached out and requested a "get

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01:04:13

Connection, Community, and Compassion - Bonnie...

Adjusting the Sails ·

2024/08/12

"As long as you have connections and a little bit of support from someone, somewhere you can find that [positivity in your situation] and that's what I try to do with the families that I work with." Bonnie navigated life as a mother to her son with Cerebral Palsy mostly on her own until she found a supportive network of other parents to children with complex medical needs. Her journey as mom to Tony taught her so much about herself and what difference she was meant to make in the world that it lead

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56:23

Supporting Other Parents, A Passion Worth Pursuing -...

Adjusting the Sails ·

2024/07/01

When a child is diagnosed with a neurological difference, disability, or medical complexity, emotional support is the first thing a parent needs according to UnPuzzed Parents Connect Support Group founder, Whitney Price. "The story you thought you were going to have is now being told in a completely different language" is how Whitney and her husband felt when their son, Connor, was diagnosed with autism spectrum disorder. Finding herself isolated, misunderstood, and unsure about the future, she and

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57:12

Walking in Sib Shoes - Allie Saweikis, Sister and...

Adjusting the Sails ·

2024/05/13

Allie tells her experience as a sibling to her brother who has Autism. She shares early years of watching her mom navigate the system for her brother, how she was involved as a child, and how that involvement led to her future career choice and the person she has grown up to be. Also, we will introduce Sibshops and hear from Allie her opinion on the effectiveness of a supportive network for other siblings. Sponsored by the West Virginia Department of Health and Human Resources, Office of

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59:51

"Owning the Autistic Experience" A First Person...

Adjusting the Sails ·

2024/03/31

Join us in this thoughtful discussion with Cortland Nesley as he describes his personal journey in navigating the feelings and thoughts of being an adult with autism in a world that doesn't understand. Cortland speaks on his "awakening", what led him to seek out community, how his perspectives have shifted throughout his life of support needs, and about how his diagnosis influences who he is as a person. What would he say to parents navigating the early days of their child's diagnosis and what are

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51:52

Mandy's Voice - Carrie Cobun-Stark, The Mom Whose...

Adjusting the Sails ·

2024/03/04

"I still remember exactly what he said, he was eating lunch; his quarter pounder with cheese and fries, and he pulled up the scan on the viewfinder and said, 'See this big black hole? This is what's left of Mandy's brain" Carrie and her then husband, Mark, had a healthy pregnancy and were prepared to bring their new baby home. After a stressful delivery, and overhearing a doctor refer to their new baby as one of the "bad babies" to be delivered that day, Carrie and Mark confusedly took Mandy home

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37:27

Beyond Surviving – Eric Murphy, Mental Health...

Adjusting the Sails ·

2024/02/05

Parenting a child with special health care needs can add unique stressors to a marriage. Join us in discussion with CED's Mental Health Professional, Eric Murphy, as we explore techniques couples can implement to keep their spark alive amidst stress and adversity. Connect with us Facebook and join our episode discussion Ask a Question Get Connected to a Parent Network Specialist Sponsored by the West Virginia Department of Health and Human Resources, Office of Maternal, Child, and Family

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01:09:39

Sex Education: It's On Us

Adjusting the Sails ·

2024/01/08

A Panel Discussion of the importance of teaching individuals with disabilities about body autonomy, sexual health, relationships, consent, safety and more; AKA sex education. It's truly On Us to ensure the people in our lives with disabilities are informed and empowered. Often times, "sex education" is considered not vital to the lives of individuals with disabilities, but it's just not the case. Join our expert panelists to hear about why people with disabilities should be educated, what the

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42:16

Holiday Survival Guide: A Panel Discussion of How to...

Adjusting the Sails ·

2023/10/02

For families of children with special health care needs and other disabilities, the upcoming holidays present their own challenges and stressors that are as unique as the needs of their children themselves. The most wonderful time of the year is also overstimulating, overwhelming, and sometimes, overrated for the families and children with different sensory needs, dietary needs, and mobility needs. We've consulted with three professionals to discuss prevention strategies, holiday navigation tips,

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31:09

Feeding May Need Guided- Cassie Miller, Speech...

Adjusting the Sails ·

2023/08/07

"About 60% of all kids experience picky eating" - Cassie Miller, EdD, CCC/SLP and Director of the WVU CED Feeding and Swallowing Clinic joins us on this episode to talk about a challenge that many families face. Children with and without special health care needs and diagnoses will all experience changes in their eating habits and patterns that will sometimes cause caregivers to question the need for professional interventions. Cassie discusses with us what behaviors are typical for children and

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58:04

Vacationing: The Good, The Bad, & The Ugly, A Panel...

Adjusting the Sails ·

2023/07/05

We've assembled three experts to discuss the tips and tricks, and unique challenges and joys of taking a family vacation with a child with a disability. Sheila Harman is a mom to four, some of whom have special needs, and a Travel Agent with Magical Vacation Planner. Sheila was led to her career after realizing that even families of children with special needs wanted...and NEEDED a vacation but vacations didn't always appear to be accessible for one reason or another. Sheila works to take the

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38:19

"Keep Moving Forward" - Autum Johnson, Mom Who Saved...

Adjusting the Sails ·

2023/06/05

Autum is a mother of three children, two of which have special needs. She is a self-taught expert of Spinal Muscular Atrophy (SMA) after her son was diagnosed as an infant and the doctors and medical professionals knew so little about the condition that she was told to research it on her own. Autum has spent the last six years fighting for the medication and standard of care that her son with SMA requires and her advocacy has saved his life and hindered the progression of his disease. Determination

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26 results

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