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.

Listen on iHeartRadio, Spotify, Audible, or below.

• 
  "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.

  Transcript: Episode 8
• 
  Options for Aging Foster Youth in West Virginia - Michelle Fleece, MODIFY Program Manager

  "West Virgina 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!

  Visit the MODIFY website here to learn more or to make a referral.

  Transcript: Episode 7
• 
  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?

  Transcript: Episode 6
• 
  "Love is All That Matters" - Tracy Wood, F2F Parent Leader and Mom to Many, Redefines Family Through Fostering a Child with Special Needs

  In honor of foster care awareness month, Tracy Wood has joined us to kickoff a series of episodes on the heart-wrenching, cup filling, love inspiring reality of fostering a child with a disability or special health care need.

  • •  Connect with us Facebook and join our episode discussion
  • •  Ask a Question
  • •  Get Connected to a Parent Network Specialist
  • •  Learn about fostering children with disabiities: Specialized Family Care

  Transcript: Episode 5

  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 courtney.ringstaff@hsc.wvu.edu.

• 
  "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.

  Transcript: Episode 4

• 
  "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.

  On Eagles' Wings Website

  Transcript: Episode 3

• 
  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**

  Transcript: Episode 2

• 
  "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**

  Transcript: Episode 1