Adjusting the Sails

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! Connect with us Facebook and join our episode discussion 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.

"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 Connect with us Facebook and join our episode discussion 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. 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

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 Travel Agent with Magical Vacation Planner. 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. Accessible recreation in WV Autism specific travel resources and directory Autism on the Seas - includes programs for all special needs Traveling with a disability - Department of Transportation guidelines Connect with us Facebook and join our episode discussion 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.

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. Connect with us Facebook and join our episode discussion 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 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

"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. Connect with us Facebook and join our episode discussion Ask a Question Get Connected to a Parent Network Specialist Learn about foster care and fostering children with disabilities: Specialized Family Care Access episode transcript 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 courtney.ringstaff@hsc.wvu.edu

"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? Connect with us Facebook and join our episode discussion Ask a Question Get Connected to a Parent Network Specialist Learn about foster care and fostering children with disabilities: Specialized Family Care Children's Home Society of West Virginia Access episode transcript 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

"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. Connect with us Facebook and join our episode discussion Ask a Question Get Connected to a Parent Network Specialist Purchase God Said No: Why the fires of my life were necessary from Amazon Borrow God Said No from Disability Resource Library Welcome to Holland Poem 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

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 Eagle's Wings webiste Connect with On Eagles' Wings on Facebook Email Carol Carol's Office number: 304-368-1221 Carol's Cell Phone number: 304-288-9748 PATH International website PATH International locations directory IDD Waiver referred to as "goods and services waiver" Information Follow Adjusting The Sails on Facebook and join our 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 If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

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: http://wvcadv.org/partners/ Connect with us on Facebook and join our podcast discussion: https://www.facebook.com/WVF2FHIC Ask a Question: https://cedwvu.wufoo.com/forms/rwd8k1x0us6mx4/ 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: https://cedwvu.org/families/podcast-series-adjusting-the-sails/ If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

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: https://cedwvu.org/resources/traumatic-brain-injury/ Learn about Parent Network Specialists like Tina here: https://pns.cedwvu.org/ Connect with us Facebook and join our episode discussion: https://www.facebook.com/WVF2FHIC Ask a Question: https://cedwvu.wufoo.com/forms/rwd8k1x0us6mx4/ 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: https://cedwvu.org/families/podcast-series-adjusting-the-sails/