Adjusting the Sails
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 representatives and service providers to offer education and training to the listener. This podcast is sponsored by the West Virginia Department of Health and Human Resources, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and produced by the West Virginia University Center for Excellence in Disabilities.
Episodes
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...
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 finall...
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 bo...
**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 jo...
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 a...
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 an...
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 la...
"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, Lea...
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...
"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 h...
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 h...
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.
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 parent...
"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...
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.
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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 panelist...
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 profes...
When Kyle was born, Leeann and her family were thrown into a tailspin. Life changed quickly for the Pellegrins and they found themselves navigating an unknown diagnosis and new lifestyle. Leeann's advocacy and tenacity ensured Kyle received the inclusive education and medical care he deserved. Leeann narrates a story of raising a child with special needs during a time when resources are limited and how she empowered Kyle and his br...
"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 profession...
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 ...
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