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  • Walking in Sib Shoes - Allie Saweikis, Sister and Disability Advocate

    Walking in Sib Shoes - Allie Saweikis, Sister and Disability Advocate
    2024/05/13

    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 分
  • "Owning the Autistic Experience" A First Person Perspective - Cortland Nesley, CED Program Manager and Autistic Adult

    "Owning the Autistic Experience" A First Person Perspective - Cortland Nesley, CED Program Manager and Autistic Adult
    2024/03/31

    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 時間
  • Mandy's Voice - Carrie Cobun-Stark, The Mom Whose Journey With Her Daughter Continues to Inspire and Educate Others

    Mandy's Voice - Carrie Cobun-Stark, The Mom Whose Journey With Her Daughter Continues to Inspire and Educate Others
    2024/03/04

    "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 分
  • Beyond Surviving – Eric Murphy, Mental Health Professional Discusses How to Love Through Adversity

    Beyond Surviving – Eric Murphy, Mental Health Professional Discusses How to Love Through Adversity
    2024/02/05

    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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    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 分
  • Sex Education: It's On Us

    Sex Education: It's On Us
    2024/01/08
    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 時間 10 分
  • Holiday Survival Guide: A Panel Discussion of How to Navigate the Most Over Stimulating, Inaccessible, Exhausting Time of Year.

    Holiday Survival Guide: A Panel Discussion of How to Navigate the Most Over Stimulating, Inaccessible, Exhausting Time of Year.
    2023/10/02

    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 Burt, Occupational Therapist, Heather Merritt with Positive Behavior Support, and Peggy Hovatter from the Autism Training Center. And for our parents, don't forget that there is no such "hallmark holiday" and that if you're spending time with your family, no matter what that looks like for you, you're doing it right! 

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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. 

     

    Episode transcript available here. 
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    42 分
  • Living A Life I Didn’t Plan For - Leeann Pellegrin, Boy Mom X 5, Advocate, and Author of Children’s Book, Hey, I’m Alex.

    Living A Life I Didn’t Plan For - Leeann Pellegrin, Boy Mom X 5, Advocate, and Author of Children’s Book, Hey, I’m Alex.
    2023/09/04

    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 brothers to be advocates for themselves and others with special needs.   She discusses the sibling dynamic and how having a child with special needs affects her other children from her parent lens, and the inspiration for her book, Hey, I'm Alex, written from Kyle's younger brother's perspective. 

    Check out Hey, I'm Alex on Amazon. 

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    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. 
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    43 分
  • 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

    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
    2023/08/07

    "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 that team? What will the evaluation and/or feeding therapy look like? When does picky eating become problematic? How are parents hurting or helping children as they explore foods and work through what may or may not be developmentally appropriate eating patterns? Cassie tells all in this episode! You do not want to miss! 

    Resources: 
    Ellyn Satter's Division of Responsibility in Feeding
    Support for families working through feeding challenges
    Developmental milestons for eating

     

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    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. 

     Learn more about the WVUCED Feeding and Swallowing Clinic 

    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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    31 分