Rare Parenting Podcast Roundup | March 2024

In March, several great podcasters shared knowledge and guidance for parents of children with disabilities or special needs. The following episodes offer practical advice on several topics, including dealing with your child’s sensory processing issues, special education at school, communication therapy for non-verbal (or non-speaking) children, and transitioning from child to adult care. Also included are episodes on personal perspectives on seizures, being a sibling of a child with disabilities, parental burnout, as well as dealing with bullying, and tips on how to support parents who have lost a child. See below for each episode’s synopsis, and listen in directly from this article!

1. How Rare Parenting’s founder created a charity and magazine to support the special needs community

Megan Nolan, mother of a son diagnosed with FOXG1 syndrome, a neurodevelopmental rare disease that causes cognitive and physical disabilities, shares her struggles both before diagnosis and after diagnosis through genetic testing,  and how it has transformed her career and life. Nolan addresses her path into rare disease funding and activism, which includes founding The Children’s Rare Disorders Fund focused on the development of new therapies for FOXG1 Syndrome, and her path into creating Rare Parenting magazine, to provide much-needed doctor-backed advice and guidance to special needs families.

Rare Together, Episode 2, March 7

2. Transition from pediatric to adult care for children with chronic conditions

Neil Ead, a veteran pediatric and chronic care nurse, discusses the importance of preparing for the transition from pediatric to adult care in advance. Ead addresses common barriers faced during the process, including resistance to give up established relationships from both the parents and pediatric caregivers and the lack of resources to help families through the process. He also shares tips that might help families with the transition, including having specific services in hospitals that care for young adults during the transition and keeping the pediatric care team involved until families have an established relationship with the adult care team.

Raising rare, March 27

3. What to Do When Your Kid is Being Bullied

Susanna Peace Lovell, a certified life coach dedicated to special needs families, and Zoe Shaw, a licensed psychotherapist, discuss bullying and harassment of children with disabilities. Lovell and Shaw, who have children with special needs, touch on the potential negative effects of bullying on a child’s physical and mental health, school performance, and social activities. They offer examples of warning signs, such as the emotional and behavioral changes that may indicate your child is being bullied. Lovell and Shaw also explain the school’s and individualized education program’s duties to handle bullying situations to ensure your child’s right to an unhampered public education, and practical ways you can manage the situation both at school and at home.

Brave Together, Episode 171, March 20

4. The Sibling Perspective on Special Needs Children

Occupational therapist Stephanie Dotson shares her perspective of growing up with her younger sibling Abby, diagnosed with severe intellectual disability, visual and hearing impairments, autism, and sensory processing issues such as an inability to feel pain. During adolescence, Abby developed severe epilepsy, leading to several complications that caused her death at the age of 16. Dotson describes the relationship she developed with her sister and how it shaped her life, the hardest situations she had to deal with, and how she acquired a sense of responsibility and independence at an early age. She also shares practical advice for siblings in a similar situation and for parents caring for siblings.

Raising Disabled, March 15

5. Basics of Genetics

Host Stan Crooke, MD, PhD, and founder of the n-Lorem Foundation, a non-profit organization focusing on creating individualized treatments for patients with nano-rare diseases—those affecting no more than 30 people worldwide—presents the first of two episodes on the basics of genetics. Crooke discusses the genetic letters (nucleotides) that compose the genetic code, factors that cause the appearance of genetic errors called mutations, types of genetic mutations, the multiple systems that exist within cells to correct mutations, and how genetic information is translated into a protein. In the second episode on the topic, Crooke will delve into disease-causing mutations and the molecular reasons why some mutations cause diseases and others do not.

Patient Empowerment Program: A Rare Disease Podcast, March 20

6. Preschool special education

Special education teacher Deanne Lutz shares her expertise with early special education intervention in young children with diverse medical needs and dives into the challenges and accomplishments of working with children. Lutz works with both children who, with early intervention, can enter a general preschool education environment, as well as with those who require a special education preschool program, regardless of intervention. She offers practical advice for both educators and parents to create inclusive and supportive learning environments and the importance of individualized education programs (IEPs) to help children throughout general education.

Surpassing Labels, episode 12, March 14

7. How to deal with your child’s IEP team

Host Alaine Jacobs, mother of two children with hearing loss, shares practical tips on how you can work together with your child’s individualized education program (IEP) team, to support your child in school. According to Jacobs, it is essential to be in constant communication with your child’s IEP team and teachers to establish relationships with them. This relationship will ease any tough conversations you may have concerning your needs or complaints. She advises you to thoughtfully write your parent statement of the goals you have for your child, use collaborative language that puts you on the same page with the IEP team, and understand the education system so you can discuss with the team strategies or trials that may help your child succeed.

Raising Deaf Kids, Episode 35, March 14

8. What a Seizure Feels Like

Host Sam Diann describes how it feels like to have tonic-clonic seizures, which involve both stiffening and twitching phases of muscle activity. She explains how an aura—a set of abnormal sensations and emotions—can be her first warning sign that a seizure is beginning. Diaan describes in detail the symptoms she experiences at the onset of a seizure, including eye twitching and mental breakdown, to those occurring in the later stages, such as muscle twitching, brain shut down, and losing control over her body. She also addresses her feelings of fear of having pieces of her life shut down and the embarrassment of having a seizure in public and needing to rely on the help of others during seizures.

Figuring Out Epilepsy, March 20

9. Understanding apraxia and non-speaking children

Host Rob Gorski speaks with Samantha Fox, a speech-language pathologist and founder of the Beyond Speech Therapy Center in Munroe Falls, Ohio. Apraxia is a neurological disorder in which the precision and consistency of movements underlying speech are impaired, which is common among children diagnosed with autism. Fox discusses the communication challenges associated with apraxia and shares insights into the spelling-to-communicate (S2C) method, which teaches children the determinant motor skills necessary to point letters to spell their thoughts. She also shares signs and symptoms parents should consider, and the importance of early intervention to address each child’s needs.

The Autism Dad, March 21

10. Supporting your child with special sensory processing needs

Joining this episode is Laura Petix, a pediatric occupational therapist and creator of The OT Butterfly website, and mother of a 2-year-old daughter with tactile sensory processing needs, sharing information on interoception—the sensing of internal body signals, such as when you are hungry, or when you need to use the bathroom. Petix discusses the impact of sensory processing challenges on children’s learning and behavior, addressing topics like potty training, emotional regulation, and feeding issues.  She also shares tips to help you understand your child’s sensory profile and behavior, and sensory strategies and challenges you can use to support and engage with your child.

The Autism Little Learners Podcast, episode 63, March 26

11. Supporting families of children with kidney diseases

Host Katie Taylor talks to Julie Guillen, a child life specialist who has been working for 18 years in renal service at Texas Children’s Hospital in Houston. Guillen emphasizes the impact of specialized knowledge in a particular disease to help children and families navigate their care. She discusses advancements in transplant medicine, particularly for children with end-stage kidney disease, and how dedicated treatment units contribute to the progress of care.  Beyond medical interventions, Julie also aids families as they manage school and social challenges, and engage in their communities, thereby helping children succeed from treatment recovery to life’s milestones.

Child Life on Call, episode 212, March 27

12. Impact of a child’s death and how to support parents

Rose Watson, whose 7-year-old daughter Lavender has Trisomy 18, discusses the impact of a child’s death within a specific rare disease community. Watson shares her personal experience of maintaining a relationship with a close friend who lost a child. Together with host Madeline Cheney, they discuss thoughts from parents who have lost a child, including how they would like to be supported by their rare disease community, but suddenly feel they don’t belong to it any longer. They share tips on how parents can step in to remedy this, particularly by remembering their child and keeping in contact.

The Rare Life, episode 154, March 27

13. Burnout in parents caring for special needs children

Danella Pochman, a pediatric nurse practitioner and certified coach, shares her expertise in recognizing and navigating caregiver burnout. Burnout is described as the mental, emotional, and physical exhaustion caused by the prolonged and overwhelming stress associated with caring for children with medical needs. As the mother of a son born with SATB2-associated syndrome, a neurodevelopmental rare disease, who personally experienced burnout, Pochman offers supportive tips on how you can identify, prevent, and manage burnout while caring for your children. She also addresses the importance of self-care, and how creating a strong community can help parents feel validated and supported through the challenges of raising children with disabilities.

Disability Parenting Podcast, episode 9, March 5

14. Creating connections in a fragmented landscape

Megan Nolan, rare mother and founder of Rare Parenting magazine, discusses her move from London to New York to create a better environment for her family as she cared for her baby with FOXG1 Syndrome. She touches on the differences in the healthcare systems and the importance of surrounding yourself with your support network. She also discusses the reasons behind her long wait for a diagnosis, and the reasons for launching the magazine and her and her husband’s charity.

Raising rare, March 27

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