Adjusting the Sails cover art

Adjusting the Sails

By: West Virginia University Center for Excellence in Disabilities
  • Summary

  • 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.
    2022
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Episodes
  • Walking in Sib Shoes - Allie Saweikis, Sister and Disability Advocate
    May 13 2024

    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 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.

    Episode Transcript Here

    If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

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    57 mins
  • "Owning the Autistic Experience" A First Person Perspective - Cortland Nesley, CED Program Manager and Autistic Adult
    Mar 31 2024

    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 Autism.

    Resources:

    Don't Mourn For Us

    Autistic Women and Nonbinary Network

    NeuroTales

    Autism Inc.: The Autism Industrial Complex

    Wrong Planet

    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.

    Episode Transcript Here

    If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

    Show More Show Less
    1 hr
  • Mandy's Voice - Carrie Cobun-Stark, The Mom Whose Journey With Her Daughter Continues to Inspire and Educate Others
    Mar 4 2024

    "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.

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    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.

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    52 mins

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