• "Where Truett Begins and The Autism Ends" - Courtney Ringstaff, Social Worker and Host of Adjusting The Sails
    Sep 23 2024

    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 to know you" type of episode. Please enjoy and remember, together, we can adjust the sails.

    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

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    53 mins
  • Connection, Community, and Compassion - Bonnie Shannon, Parent Network Specialist
    Aug 12 2024

    "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 her to her career as a Parent Network Specialist (PNS) so she can help others on similar journeys.

    Connect with Bonnie and our team of other PNSes.

    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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    1 hr and 4 mins
  • Supporting Other Parents, A Passion Worth Pursuing - Whitney Price, Founder of UnPuzzled Parents Connect Support Group
    Jul 1 2024

    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 her husband were desparate for a support network and for resources for their son and their new life.

    Listen in to hear about Whitney's journey and how through adversity she found a passion for helping others access services and for growing a support network for other parents navigating parenthood with a child with high support needs.

    UnPuzzled Parents Connect Support Group

    Check out our CED Paths for Parents and Family to Family Parent Network Specialist led support group, Circle of Parents.

    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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    56 mins
  • 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.

    Learn more about Sibshops at the CED.

    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

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    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
  • Beyond Surviving – Eric Murphy, Mental Health Professional Discusses How to Love Through Adversity
    Feb 5 2024

    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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    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. 

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    37 mins
  • Sex Education: It's On Us
    Jan 8 2024
    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 include: Katherine McLaughlin, M.Ed., AASECT Certified Sexuality Educator, is the Founder, CEO and Lead Trainer for Elevatus Training. As a national expert on sexuality and I/DD she trains professionals, and parents as well as individuals to become sexual self-advocates, and peer sexuality educators.  She is the author of, Sexuality Education for People with Developmental Disabilities curriculum. She has developed two online courses: Developmental Disability and Sexuality 101 for professionals and Talking to Your Kids: Developmental Disabilities and Sexuality for parents, and a 3-Day certificate training: Becoming a Sexuality Educator and Trainer. She has spent her 25+ year career committed to elevating the status of all people, which is why the name of her growing company is Elevatus Training.  Courtney (Court) Lanham is the Director of Diversity at the WVU Health Science Center and is a trainer of the Elevatus curriculum in West Virginia. Court has also developed a train the trainer model for Elevatus and serves as a mentor for other trainers. Previously, Court worked as the Training Specialist at the West Virginia University Center for Excellence in Disabilities, a Behavior Specialist for the Positive Behavior Support Program at the Center, and as an adjunct professor for the WVU School of Social Work. After receiving their Bachelors in Psychology from West Virginia University in 2009, Court received a Masters of Social Work from West Virginia University in 2011, in which they focused on clinical care for individuals with mental health diagnoses, as well as gender and sexuality. Court is a graduate of the Georgetown University Cultural and Linguistic Competence Leadership Academy. They currently have interests in training of staff and community members with a focus on diversity and cultural competence. Abby Farris serves as the Campus and Prevention Coordinator for the West Virginia Foundation for Rape Information and Services (WVFRIS). In this role, Abby focuses on both prevention and support for survivors of sexual violence on campuses throughout the state by working with the West Virginia Intercollegiate Council. Additionally, Abby works with West Virginia Disability Sexual Violence Collaborative to prevent the victimization of individuals with a disability, increase protective factors for individuals with a disability, and provide training for disability agencies on the intersection of disabilities and sexual violence. Abby is a graduate of Fairmont State University in Psychology with minors in Sociology, Criminal Justice, and Leadership and is currently completing her Masters of Social Work at West Virginia University. Abby has a passion for supporting the end of sexual violence and stalking in West Virginia.   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.    Episode transcript available here.    Resources:  List for professionals and parents Guardianship Myths Consent for Kids video ·         It’s on Us West Virginia  ·         Hot chocolate talks ·         Darkness to Light Framework ·         My body belongs to me video ·         One Step Out of Loneliness video ·         SASTA (sexual assault services training academy) ·         WVFREE Birth control chart
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    1 hr and 10 mins