Mandy's Voice - Carrie Cobun-Stark, The Mom Whose Journey With Her Daughter Continues to Inspire and Educate Others
Release Date: 03/04/2024
"Owning the Autistic Experience" A First Person Perspective - Cortland Nesley, CED Program Manager and Autistic Adult
Adjusting the Sails
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 his plans for creating change in the future as an advocate for himself and others with...
info_outline
Mandy's Voice - Carrie Cobun-Stark, The Mom Whose Journey With Her Daughter Continues to Inspire and Educate Others
Adjusting the Sails
"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 with little to no explanation and with no futher reason to be concerned about Mandy's health or...
info_outline
Beyond Surviving – Eric Murphy, Mental Health Professional Discusses How to Love Through Adversity
Adjusting the Sails
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. 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...
info_outline
Sex Education: It's On Us
Adjusting the Sails
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 education should consist of, and why it's within their human right. Our panelists...
info_outline
Holiday Survival Guide: A Panel Discussion of How to Navigate the Most Over Stimulating, Inaccessible, Exhausting Time of Year.
Adjusting the Sails
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, and recovery techniques for after a stressful holiday season. Join us in discussion with Dr. Amy...
info_outline
Feeding May Need Guided- Cassie Miller, Speech Language Pathologist and Feeding and Swallowing Clinic Director, A Structured Approach with Data to Selective Versus Picky Eating
Adjusting the Sails
"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 what feeding behaviors may indicate the need for an evaluation by a feeding team. Who should be on...
info_outline
Vacationing: The Good, The Bad, & The Ugly, A Panel Discussion of The Realities of Vacationing with a Child with a Disability
Adjusting the Sails
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 . 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 stress out of the planning. She provides everything from individualized packing lists to local emergency services information to families,...
info_outline
"Keep Moving Forward" - Autum Johnson, Mom Who Saved Her Child's Life Through Determination and Advocacy
Adjusting the Sails
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 and motivation to keep moving forward despite adversities is a way of life that resonates with...
info_outline
Options for Aging Foster Youth in West Virginia - Michelle Fleece, MODIFY Program Manager
Adjusting the Sails
"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! Learn about foster care and fostering children with disabilities: Sponsored by the West Virginia Department of Health and Human Resources, Office of Maternal, Child, and Family...
info_outline
Open Hearts, Open Mind, & Open Home - Amanda Sharp, Foster and Adoptive Mom Shares Her Family's Story of Growth
Adjusting the Sails
"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 second addition to our foster care awareness special series, Amanda answers the questions that are tough to ask about opening her home to fostering children with disabilities. How did she and her...
info_outline"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 with little to no explanation and with no futher reason to be concerned about Mandy's health or development.
Doctors talked about Mandy with Carrie in some of the most incompassionate ways when Carrie began to notice differences in Many's development, and it wasn't until Mandy was 18 months old that any health care professional finally sat her down to tell her that 1. nothing she did caused Mandy's condition and 2. there was hope for them to all live happy lives.
Carrie's experiences with medical professionals, in advocating for her daughter, and in finding the services Mandy would need, Carrie was led to a new career and a new life as Mandy's mom. By sharing Mandy's legacy, medical students learn empathy and compassion from the best possible source: a parent.
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 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.