Adjusting the Sails

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...

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...

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 advoc...

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 emo...

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...

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...

 "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...

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 th...

"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 T...

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...

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...

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...

"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...

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 th...

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...

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...

"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...

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...

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...

"West Virginia foster youth are all amazing and they need to know their options." As the final installment to our foster care awareness saga, we interview Michelle Fleece, Program Manager of the MODIFY program at the WVU CED. Michelle reviews all the details of how her program can help aging youth from foster care to attend college or other training programs after high school!    Visit the MODIFY...

"It's totally worth it", Amanda says when asked about the heartbreaking realities of fostering and adopting children with special needs and medical complexities. Amanda and Justin Sharp experienced many losses during their journey to parenthood, but the family they created, the sibling bond between their children, and the community in which they surround themselves makes it all worth it.  The seco...

    "How could something so terrible in my eyes, so breaking to my heart, and so devastating to my family be used for good?" Robin remembers feeling as if she were in the middle of a nightmare in the early years of navigating her daughter's medically complex and critical diagnoses. Amidst praying for a miracle, for healing, and for normalcy, Robin realized God's plan for her and her family.  In th...

On Eagles' Wings Therapeutic Horsemanship Center is known as a solitude and saving grace to many of the children and adults who enter. The programming provides an environment for those with disabilities to engage with horses (and other animals!) through equine assisted activities and therapies. Participants include those with cognitive, physical, emotional, and social disabilities and challenges....

Stereotype - (noun) An untrue belief that society holds about all people sharing a particular characteristic. Cheryl is a mother, daughter, friend, program assistant, and person who utilizes a wheelchair. Listen as Cheryl shares her story of rising above stereotypes to live her life to the fullest, wheelchair and all. Cheryl has faced her fair share of societal prejudice and life's adversities so...