There are many wonderful podcasters sharing stories and advice around the issues faced by parents of medically complex children. Navigating the podcasting world can be tricky! To help you out, we’ve compiled a list of episodes worth a listen. See below for recaps, and click to listen via Spotify—right from this article!
Financial Planning When You Have a Child with Disabilities
Kathryn Bryan specializes in financial planning for parents of children with disabilities and special needs. In this episode, she discusses the process of navigating available options in the U.S., such as social security, Medicaid, state-specific benefits and special needs trusts, drawing valuable insights along the way. Bryan also discusses long-term planning, such as planning for your child’s future after your death, as well as if you become ill or injured and are unable to provide care in the same way.
How To Be Content When Your Life Isn’t Easy
Co-host Amy J. Brown discusses the challenges of achieving contentment when life isn’t easy as a rare parent. She defines three “traps” that contribute to discontentment: unmet expectations, ”if only” thinking, and comparison to others. By sharing her personal stories of life with her complex needs adopted child, she offers suggestions to help you find gratitude, and embrace joy. The main message from the episode is, “Delight doesn’t fix what’s broken—it gives you fuel to press on.”
The Grief of Missing Out
Sarita Edwards is the mother to Elijah, who has Edward’s Syndrome (also called Trisomy 18). Edwards discusses the grief associated with having a medically complex child with a rare disease, alongside parenting four other children. From life not turning out the way she envisioned, to feeling overwhelmed when Elijah’s needs interrupt experiences with her other children, Edwards explores the grief of missing out. She shares a recent experience when she needed to leave her daughter’s theatre play because Elijah was becoming too agitated to stay in the audience, and how she was hit by feelings of anger, frustration, and disappointment. She acknowledges that it’s okay to feel grief in these circumstances, and that it doesn’t mean you’re not grateful for your child and your life, as unexpected as both can be.
Weighted Blankets for Children with Sensory Needs
Marna Pacheco, founder of CapeAble Weighted Products, discusses how weighted blankets, vests, and wraps can help children with sensory needs by bringing relief to the central nervous system. Pacheco explains how weighted products provide an even weight distribution compression, leading to a deep-touch calming effect. She also discusses the benefits of continued use, including ongoing sensory support, pain relief, and even focus during learning.
The Overlap Between ADHD, Neurodivergence and Deeply Feeling Kids
What is an ICU and Neurological Critical Care? Tips and a Guide for Everyone
Neurological intensive care specialist Casey Albin, MD, explains the intensive care unit (ICU), the types of patients that might require ICU care, and the importance of shared decision-making between physicians and parents. Albin discusses the need to consider possible outcomes and what the child would want, when making decisions during critical care moments, such as with which type of nutritional support to use, and when to continue breathing support. Albin also offers tips for parents as they prepare for their child’s critical care.
Infantile Spasms; the Facts, the Research, and the Hope for the Future
In this episode, we meet Chris Dulla, a neuroscience researcher at Tufts University, who teaches us about infantile spasms—a severe form of epilepsy that typically begins in the first year of life. Dulla discusses signs for parents to look out for, and what parents should do if their child is having a seizure. He also touches on the importance of early detection for improved long-term outcomes. Dulla further details ongoing research to study β-catenin, a specific protein researchers believe is involved in infantile spasms, and how new findings may translate into better diagnostic tools and more effective treatments.
Advances in Prenatal Diagnostics and Fetal Surgery
Aimeen Shabban, a fetal surgeon and director of The Chicago Institute for Fetal Health, discusses how advances in prenatal testing provide opportunities to treat, and in some cases, cure, a condition before birth. Fetal imaging and genetic testing have come a long way to diagnose congenital diseases. Shabban discusses the range of services available once diagnosed—from pre-birth counseling to complex fetal surgeries. He also shares the most frequent conditions in which children benefit from fetal surgery, such as with twin-twin transfusion syndrome (unequal sharing of blood between twins) and spina bifida (a neurological condition that can lead to paralysis).
A Contemporary Approach To Palliative Care And Hospice Care For Family Caregivers And Their Recipients
Aaron Yukich, an end-of-life doula and hospice care worker, discusses how parents and caregivers can build a healthier relationship with death. By providing emotional support, he guides caregivers to find strategies to support their loved ones while supporting their personal well-being. He also discusses activities and mindsets to offer comfort, as well as practical advice, such as finding financial and mental health support. Included are useful resources to help caregivers through end-of-life planning. Note this podcast relates to caregivers caring for adults and children alike and is not exclusive to parents caring for children.
