Adjusting the Sails
This podcast is meant to be a platform where parents, caregivers, and service providers can come together, exchange information, education one another, and find support and connection through the relatable topic discussions. We cannot change the direction of the wind or the strength of the storm, but together, we can adjust the sails.
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"Owning the Autistic Experience" A First Person Perspective - Cortland Nesley, CED Program Manager and Autistic Adult
03/31/2024
"Owning the Autistic Experience" A First Person Perspective - Cortland Nesley, CED Program Manager and Autistic Adult
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: 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. If you have a story that you would like shared on the podcast, please send us an email at [email protected]
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Mandy's Voice - Carrie Cobun-Stark, The Mom Whose Journey With Her Daughter Continues to Inspire and Educate Others
03/04/2024
Mandy's Voice - Carrie Cobun-Stark, The Mom Whose Journey With Her Daughter Continues to Inspire and Educate Others
"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. 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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Beyond Surviving – Eric Murphy, Mental Health Professional Discusses How to Love Through Adversity
02/05/2024
Beyond Surviving – Eric Murphy, Mental Health Professional Discusses How to Love Through Adversity
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 Disabilities.
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Sex Education: It's On Us
01/08/2024
Sex Education: It's On Us
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. 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. Resources: · · · · · · ·
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Holiday Survival Guide: A Panel Discussion of How to Navigate the Most Over Stimulating, Inaccessible, Exhausting Time of Year.
10/02/2023
Holiday Survival Guide: A Panel Discussion of How to Navigate the Most Over Stimulating, Inaccessible, Exhausting Time of Year.
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! 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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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
08/07/2023
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
"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: 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. If you have a story that you would like shared on the podcast, please send us an email at [email protected]
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Vacationing: The Good, The Bad, & The Ugly, A Panel Discussion of The Realities of Vacationing with a Child with a Disability
07/05/2023
Vacationing: The Good, The Bad, & The Ugly, A Panel Discussion of The Realities of Vacationing with a Child with a Disability
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, just in case! IYKYK! Dr. Brandy Brown is an Occupational Therapist and mom to a child with a disability. As an OT, she has worked with countless children to participate in and enjoy daily life. In this episode, she shares strategies from her professional lens for preparing a child with special needs for vacation and enjoying it. She also shares from her momma lens all of her own travel and vacation successes and even those times that weren't so successful... Sandy Corbett is a Clinical Social Worker with the Positive Behavior Support program at the CED. Challenges associated with traveling or vacationing are not limited to accessibility and mobility equipment, many families experience struggles related to their child's behaviors when vacationing. Sandy is here to remind parents to give themselves and their children grace during the stressful chaos that is leaving home for a vacation. Sandy shares how to prepare a child for the overstimulating experience and how to navigate sensory overload, meltdowns, and judgement from others. All in all, our expert panelists have a consensus view on taking that family trip with your child with special needs....Just Go. 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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"Keep Moving Forward" - Autum Johnson, Mom Who Saved Her Child's Life Through Determination and Advocacy
06/05/2023
"Keep Moving Forward" - Autum Johnson, Mom Who Saved Her Child's Life Through Determination and Advocacy
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 many families of children with special health care needs. 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. If you have a story that you would like shared on the podcast, please send us an email at [email protected]
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Options for Aging Foster Youth in West Virginia - Michelle Fleece, MODIFY Program Manager
05/22/2023
Options for Aging Foster Youth in West Virginia - Michelle Fleece, MODIFY Program Manager
"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 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. If you have a story you'd like to share on the podcast, please email Courtney at [email protected]
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Open Hearts, Open Mind, & Open Home - Amanda Sharp, Foster and Adoptive Mom Shares Her Family's Story of Growth
05/10/2023
Open Hearts, Open Mind, & Open Home - Amanda Sharp, Foster and Adoptive Mom Shares Her Family's Story of Growth
"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 husband have faith in themselves and their agency to accept any call they would receive? How did they have the courage to reopen their doors after suffering the worst imaginable tragedy? What advice does she have for other families who might consider fostering a child with special needs? 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 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. If you have a story that you would like shared on the podcast, please send us an email at [email protected]
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"Through a Different Lens" - Robin Hatcher, A First Look at God Said No, and A Mother's Narrative of a Perfectly Imperfect Life
04/13/2023
"Through a Different Lens" - Robin Hatcher, A First Look at God Said No, and A Mother's Narrative of a Perfectly Imperfect Life
"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 this episode, Robin sheds light on the reality of being a parent to a child with special needs. She discusses sacrifices and other challenges that are a part of her "normal" and speaks of her great love and admiration for her daughter, Haylee, who brings immeasurable light and joy to her life and family. 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. . If you have a story that you would like shared on the podcast, please send us an email at [email protected]
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"The Healing Ability of the Horse" - Carol Petitto, Executive Director and Founder of On Eagles' Wings Therapeutic Horsemanship Center, How One Woman's Passion Became a Saving Grace
04/07/2023
"The Healing Ability of the Horse" - Carol Petitto, Executive Director and Founder of On Eagles' Wings Therapeutic Horsemanship Center, How One Woman's Passion Became a Saving Grace
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. Executive Director and Founder, Carol Petitto, shares the history of On Eagles' Wings, how her passion became a service for others, why her Center is unique, and the science behind the powerful influence of the horse. Carol's Office number: 304-368-1221 Carol's Cell Phone number: 304-288-9748 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. If you have a story that you would like shared on the podcast, please send us an email at [email protected]
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A Good Life is Within Reach - Cheryl Childs, A First Person Perspective & Disability Myths Debunked
03/03/2023
A Good Life is Within Reach - Cheryl Childs, A First Person Perspective & Disability Myths Debunked
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 she has come to discuss her thoughts on commonly believed myths, why society may have those beliefs, and how we, as a community of advocates, can help to change the rhetoric. **Trigger Warning - mentions of domestic violence** National Domestic Violence Hotline: 800-799-7233 Domestic Violence Resources in West Virginia: Connect with us on Facebook and join our podcast discussion: Ask a Question: 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. Access episode transcript here: If you have a story that you would like shared on the podcast, please send us an email at [email protected]
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"When Things Like This Happen" - Tina Crook, Parent Network Specialist and Daylin's Mom, A Story of Hope
01/02/2023
"When Things Like This Happen" - Tina Crook, Parent Network Specialist and Daylin's Mom, A Story of Hope
Tina Crook is a Parent Network Specialist for the WVU Center for Excellence in Disabilities. She is passionate about her job, helping other parents of children with special medical needs, because of her experience and journey with her son, Daylin. Daylin acquired a brain injury at the age of 13, leaving him with significant left frontal lobe damage. Today, 8 years later, Tina speaks words of wisdom and hope from a parent's perspective; how she felt during the most difficult years of her life, how she managed and overcame and where Daylin is in his life and recovery now. **Trigger Warning- Mentions of suicide** Find relevant resources here: Learn about Parent Network Specialists like Tina here: Connect with us Facebook and join our episode discussion: Ask a Question: 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. Access episode transcript here:
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