Adjusting the Sails is a podcast about the lives and specific challenges children with special healthcare needs and other disabilities face along with their families, caregivers and service providers, and how to manage those challenges. The podcast is a platform for all disability-related topics to be discussed and serves as a mediator between families and caregivers, allowing them to share their stories and experiences. Adjusting the Sails features 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.

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  Climbing the Mountain without a Guide - Dr. Norrine Russell, Mom to Two Complex Teens and Founder of Russell Coaching

  It feels that you're climbing a mountain, without a guide or a backpack...and some days the sun isn't even shining". - Dr. Norrine Russell discusses her feelings and challenges early on as she navigated life with her two complex children. A lack of support and resources around her led to her founding a local support group in the Tampa Bay area and then to Russell Coaching, for children and young adults with ADHD, Autism, Learning Differences, Anxiety, and Giftedness.

  Transcript: Episode 21
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  Where Truett Begins and The Autism Ends

  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.

  Transcript: Episode 20
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  Connection, Community, and Compassion - Bonnie Shannon, Parent Network Specialist

  "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.

  Transcript: Episode 19
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  Supporting Other Parents, A Passion Worth Pursuing - Whitney Price, Founder of UnPuzzled Parents Connect Support Group

  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.

  Transcript: Episode 18
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  Walking in Sib Shoes - Allie Saweikis, Sister and Disability Advocate

  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.

  Transcript: Episode 17
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  "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.

  Transcript: Episode 16
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  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.

  Transcript: Episode 15
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  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.

  Transcript: Episode 14
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  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.

  Transcript: Episode 13
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  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!

  Transcript: Episode 12
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  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.

  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

  Transcript: Episode 11
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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

  "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!

  Transcript: Episode 10
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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

  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.

  Transcript: Episode 9
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  "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
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  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!

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

  Transcript: Episode 7
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  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
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  "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

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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

  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

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  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

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  "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