Rare Parenting Podcast Roundup | February 2024

In February, many amazing podcasters shared guidance for navigating life as parents of children with disabilities. This month’s round-up offers practical advice on a series of topics, including dealing with the personal trauma associated with rare parenting, career transitions, speech therapy using communication devices, and managing relationships with adults. Also included are episodes on scientific advances, such as the use of artificial intelligence in epilepsy, amongst other important topics. See below for recaps, and listen to the episodes directly from this article! 

1. Moving old careers into new worlds

Megan Nolan, mother of a son with a neurodevelopmental rare disease called FOXG1 syndrome, and founder of Rare Parenting, shares how her son’s disorder reshaped her career, which had ended with his birth. Just three months after diagnosis, she and her husband launched The Children’s Rare Disorders Fund, a non-profit that funds FOXG1 research. A year later, Nolan launched Rare Parenting, utilizing her previous career in New York-based magazines and marketing to provide professional, medically-backed parenting advice to parents of children with disabilities and special needs. She encourages you to follow your intuition in your quest for diagnostic answers and symptom management, and to use your previous skills and experience to find new callings. Nolan also shares tips that can help you combine intensive caregiving with self-care, and how you can be a supportive ally to other medically complex families.

I Don’t Know How You Do It, Feb 8

2. Understanding your trauma as a parent in order to heal

Joining this episode is Meghann Crane-Russ, a former in-patient pediatric and palliative care social worker who specializes in supporting parents through medical needs, loss, and grief. Crane-Russ discusses the impacts of trauma and the pathways to recovery and healing. She breaks things into two buckets: “big t” trauma, such as a violent episode or death, and “little t” trauma, such as adverse early childhood experiences. Through her deep understanding of the brain and body’s response to trauma, Crane-Russ explores the complexities of the biology behind the traumatic process. She shares tips to help you understand traumatic experiences, find the resilience to cope, and find available tools to guide you through the healing process. This is the first of 3 episodes on trauma and recovery with Crane-Russ.

The Special Needs Mom Podcast, Feb 21

3. AAC: Communication techniques for non-verbal children

Jacqueline Kearns, a speech-language therapist at Cleveland Clinic Children’s Therapy Services specializing in Augmentative and Alternative Communication (AAC), discusses the communication challenges faced by children with special needs.  Kearns explores the essential role of early intervention and tailored therapeutic approaches to enhance communication skills. She highlights AAC techniques that might support or replace verbal communication, such as gestures, symbols, word boards, and speech-generating devices (devices with pre-recorded messages). This episode is a useful resource for parents searching for communication support for their non-verbal or non-speaking children.

Surpassing Labels, episode 8, Feb 15

4. AAC: Supporting Switch Use and Switch Scanning

Heidi Rabe, a speech-language pathologist with experience in supporting people with complex needs, discusses the use of augmentative and alternative communication (AAC) strategies, including adaptive switches and scanning. Switch scanning works by connecting one or more switches to a computer or communication device. Rabe addresses issues such as identifying if a student may benefit from this technology and working with physical/occupational therapists to determine the right access point(s).  She also reviews the utility of using Partner-Assisted Scanning, where a partner verbally offers choices at a consistent rate for the AAC user to indicate what word they want. 

Talking with Tech AAC Podcast, Feb 29

5. Artificial Intelligence and Epilepsy

In this episode, Daniel Goldenholz, a neurologist at Beth Israel Deaconess Medical Center, discusses the promises and pitfalls of artificial intelligence (AI) in epilepsy care. Goldenholz defines AI as translating intelligence into advanced machines that can make complex decisions and predictions. He presents FDA-approved AI tools already in use for people with epilepsy, such as the embrace2 wearable wrist device that can detect seizures based on physiological measures and instantly alert caregivers, and the 2HELPS2B score that helps predict seizure risk utilizing an EEG’s activity patterns. Goldenholz also discusses how AI can be used in the future for epilepsy, such as for determining the best medication or surgical treatment options, and predicting patient outcomes.

Seizing Life, Feb 7

6. Getting your deaf toddler to sleep through the night

Melanie Duval, an infant sleep specialist night nanny, offers support tips to help the whole family achieve healthy sleep. Duval, who is a hard-of-hearing adult, shares her top strategies to help deaf or hard-of-hearing babies and toddlers sleep.  She notes a higher need for hands-on contact and your close presence to help children feel safe and reassured, promoting an easier transition to sleep. She further touches on strategies to help your child know when it’s time to sleep, such as using a Hatch nightlight with a color code to define the sleeping time, and physically returning your child to bed each time they wake during the night.

Raising Deaf Kids, Feb 22

7. Sex and disability parenting

Amanda Griffith-Atkins, a licensed marriage and family therapist and mother of a son with Prader-Willi Syndrome discusses the impact parenting medically complex children has on intimacy. Several reasons are associated with sex struggles, including lack of time, energy, and space, as well as the absence of self-confidence or emotional mood. Griffith Atkins and host Madeline Cheney share stories from couples and tips on how you can feel more connected to your partner. Griffith-Atkins emphasizes that prioritizing sex, talking to your partner about how you envision sex in your specific context, unpacking anxiety, and scheduling time for sex may help you reclaim your intimate life.

The Rare Life, episode 147, Feb 8

8. Being misunderstood by other adults

Podcast co-host Amy J. Brown is the mother of an adopted child with reactive attachment disorder and fetal alcohol spectrum disorder. Brown shares practical tips for things you can do to navigate the challenges of being misunderstood by other adults who do not have kids with complex needs. For starters, when others make seemingly hurtful comments, Brown encourages you to shift your perspective so that instead of feeling offended, you look for ways to connect. Finding the connection points can allow others to understand your life better. She also stresses the importance of finding ways to calm down so you can be in a state of mind more primed to share your story with others. She mentions that as you increase people’s awareness, you’ll gather strength and feel less alone.

Take Heart, episode 159, Feb 6

9. Accessing mental health benefits

This is the first of a two-part series discussing the basics of accessing mental health services and benefits. Natalie Elliott Handy, health executive at Health Connect America, a behavioral and mental health company, gives an overview of what services are available and how to access them. Handy discusses the implications of health insurance and opportunities in funding programs available in each state, such as with Individualized Education Programs (IEPs) and 504 Plans, which provide personalized special education learning roadmaps. Handy also encourages you to understand employee benefits, which may include counseling and support services for mental health issues and/or caregiver support.

Brave Together, Feb 7

10. Addressing inequities in pediatric orthopedic care

Three pediatric orthopedic specialists at the Institute for Sports Medicine at Lurie Children’s Hospital of Chicago unravel projects to uncover inequities and suggest better treatment options and better access to care for all children. Cynthia LaBella explains that KIPP (Knee Injury Prevention Program) and a care program for concussions are both designed for teenagers who are active in school sports. Neeraj Patel discusses the inequalities in access to surgeries to treat knee injuries, with children from more disadvantaged areas having more difficult access to care. Jill Larson shares notes on racial disparities in the diagnosis of scoliosis, an abnormal curvature of the spine.

Precision, Feb 8

11. Book Review: Everything no one tells you about parenting a disabled child

In this episode, Kelley Coleman, mother of a son with an undiagnosed rare genetic disease and author of the book, “Everything No One Tells You About Parenting a Disabled Child,” shares her transformation as a special needs mom, from initial shock to rediscovering peace. She discusses her book as a guide for fellow parents, filled with wisdom and tips to navigate the complexities of medical, educational, and social systems. She also addresses the emotional rollercoaster of raising a child with disabilities—although the journey demands intense commitment and self-sacrifices, it is also joyful and inspirational.

A Very Bright Life, episode 92, Feb 29

12. Company Review: An intro to COMBINEDBrain

This episode features Terry Jo Bichell who is the mother of a son with Angelman syndrome, neuroscientist and founder of COMBINEDBrain, a nonprofit organization intending to speed the development of treatments for rare genetic neurological disorders. Bichell shares key services and programs of the organization, including a biorepository with patient-derived cells and clinical data from patients with different neurological disorders that can be used for research. Sample collection is two-fold, with COMBINEDBrain member organizations organizing collections of samples at predetermined collection sites, as well as at-home collection by sending trained phlebotomists. Bitchel also shares details on Project FIND-OUT, which aims to facilitate early diagnosis of rare neurodevelopmental genetic diseases in children.

Once Upon a Gene, episode 217, Feb 8

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