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Rare Parenting Podcast Roundup | October 2023

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!

When the “FOMO” Starts Creeping in as a Medical Parent

Have you ever experienced “FOMO,” for your child, feeling that he/she is missing out on life experiences? You may feel saddened by the fact that your child can’t enjoy certain life experiences, or you may feel guilty that you can’t share in certain parent/child experiences with them. You may also face tough decisions: Do you let your child have an experience that isn’t suited for their condition?, or should they miss out on it, to stay safe and comfortable? This episode suggests strategies to manage life when “FOMO” sets in, such as adjusting to experiences your child can enjoy, and how to adapt experiences to be more accessible.

Confessions of a Rare Disease Mama, Episode 10/6

Finding Your Rare Disease Community

Building a community not only allows you to share experiences, but it can also help fight isolation and improve mental health. The host describes his journey during a Phenylketonuria (PKU) conference in the U.K., where he interviewed several people from different countries affected by PKU (and disorders treated as PKU). He draws insights from these interviews to discuss the differences in each person’s approach to life. He further discusses how despite these differences, support is found by belonging to the same rare disease community.

Never Give Up, A Rare Disease Podcast, Episode #4

Sensory System’s Everyday Impact

Pediatric Occupational Therapist Munira Ardhanwala talks about how the child’s brain processes sensory stimuli and discusses how physical activities can ground intense emotions. She explores how muscle movements, such as jumping on a trampoline, crawling, pulling on a rope, and simply pushing against an adult’s hand, can all help children regulate their emotions, develop motor skills, and improve their movement-relaxation balance. Also included are mentions of resources to further support your child’s sensory and motor development.

Parenting the Intensity, Episode #17

Barriers Disability Parents Face + How to Receive This Much-Needed Care

Parents of medically complex children can experience intense emotions such as feelings of grief, despair, isolation, anger, resentment, frustration, and more. In this episode, Liz Spitzer, a clinical psychologist and rare mom, validates that rare parents deserve care, and reminds us that we need to allow ourselves to take time to care for ourselves. She talks about different types of therapy you can benefit from, the barriers faced to getting therapy, and strategies to overcome these barriers. Useful online resources are mentioned to help with a search for self-therapy care.

The Rare Life, Episode #138

Utilizing Child Life Specialists

Child life specialists are often first encountered at the hospital, as pediatric specialists who support you and your child as you navigate hospital stays. However, many are also available outside the hospital, acting as counselors to help navigate everything from diagnosis to caring for your child in daily life. In this episode, you will hear from Katie Taylor, a child life specialist, and CEO of Child Life On Call. She explains how child life specialists can offer psychosocial and psychological care for both you and your child, empowering you on your parenting journey.

Once Upon a Gene, Episode #202

What if We Could Reduce the Stress of Caregiving?

In this episode, we meet Vik Sharma, the father of a child diagnosed with Cerebral Palsy, born nonverbal and non-ambulatory. Vik discusses the burdens of caregiving and offers strategies to reduce the load. He also touches on the importance of patience, managing impatience, mixing new technology with old, and always remembering to do what works best for you and your child.

How to Be a Great Health Care Advocate for Your Complex Kid

Julia Roberts, a mother of two children, both born with a neurodevelopmental genetic disorder, draws from her experiences to discuss tips on how to be an advocate. Her number one tip is to be comfortable asking for, and accepting, help. She discusses the importance of ensuring that friends and family are aware of the challenges you face, so that they are better equipped and more motivated to help you. She also discusses simplifying your life, figuring out how to manage your emotions, and when to seek therapy. She reminds you to keep life going, despite the challenges you face.

Just Needs: Parenting Children with Disabilities, Episode 10/12

My Child is Aggressive and I Feel So Alone

Caring for aggressive children can bring feelings of shame or fear of judgment from others, often resulting in some form of isolation. Together with guests, life coach Susanna Peace Lovell, and family therapist Kimberly Kooy, speak about these feelings and offer suggestions to deal with aggressive behavior. They utilize listeners’ questions during the discussion to arrive at their points. They also discuss the documentary UNSEEN, to serve as a reminder that you are not alone, as you care for your complex needs child.

Brave Together, Episode 10/18

Back to School Check-in and Evaluation

The turbulence of activities and responsibilities of a new school year can be more than just a little overwhelming. Kara and four moms discuss creating an effective system for your family – from using visual calendars and grocery delivery services to managing your child’s fatigue and stress. They share tips on creating new habits for kids to achieve milestones, and how reducing extra activities or joining communities can give kids space to relax. Topics like asking for help, improving communication with teachers, and taking a break from your kids, are also explored.

The Special Needs Mom Podcast, Episode 10/11

For more curated lists, check out our Rare Parenting book lists for kids!

Disclosure: Occasionally, we include links to recommended products. When you purchase a product through a link, we may earn a small percentage of the sale, at no cost to you. These sales contribute to the operation of our site, and help to keep content free to read.

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