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.

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

"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.

Connect with Bonnie and our team of other PNSes.

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

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.

Listen in to hear about Whitney's journey and how through adversity she found a passion for helping others access services and for growing a support network for other parents navigating parenthood with a child with high support needs.

UnPuzzled Parents Connect Support Group

Check out our CED Paths for Parents and Family to Family Parent Network Specialist led support group, Circle of Parents.

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

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

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

"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.

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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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.