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Rare Parenting Podcast Roundup | December 2023

December saw many great podcasters sharing guidance, information, and stories. The following episodes cover a range of topics, such as navigating your child’s limitations and hospital stays during special events, managing their chronic pain and sleep issues, as well as topics around genetic testing, early intervention, and more. Have a listen to one or all, directly from this article!

1. Navigating events with emotionally intense children

Jami Kirkbride, mother of seven and licensed counselor, discusses the challenges during the holiday season that come with having emotionally intense kids. Kirkbride shares tips for handling your child’s anxiety and sensory processing needs, and emphasizes that prioritizing your child’s needs over external influences and judgment is crucial to faring well. Her three main messages are: recognize your child’s triggers and support them with sensory tools and breaks, educate family members, so they can support the both of you, and remember to let go of expectations, and instead adjust plans according to your child’s needs.

Parenting the Intensity, Episode 23

2. Navigating events during hospital stays

Aside from the trauma of having your child in the hospital, you may also feel lonely, as though everyone is celebrating except your family. Amanda Griffith-Atkins, mother to a child with Prader-Willi Syndrome, and a licensed marriage and family therapist, discusses how to cope if your child is inpatient during important calendar moments. She explores personal emotions tied to these situations as well as strategies to work with the situation — such as celebrating the holiday early, finding ways to celebrate in the hospital, or simply letting the holiday or event pass you by. Also shared are tips from listeners and practical ideas on how to celebrate in the hospital, if that is the best solution for your family.

The Rare Life, December 2023

3. Redefining holiday traditions with inclusivity

The host, Kara Ryska, mother of a son who survived multiple brain tumors that led to several disabilities, invites you into a circle of mothers who discuss their struggles and victories while planning for the holidays. Brooke, mother of a nonverbal 13-year-old daughter with autism and intellectual disability, Erica, mother of a 5-year-old boy with William syndrome, Francesca, mother of a 4-year-old girl with cerebral palsy and epilepsy, and Rachel, mother of a 9-year-old girl with a rare genetic disease associated with global delay and nonverbal communication, explain how to embrace the needs of their children while making the holidays inclusive and joyful.

The Special Needs Mom Podcast, December 2023

4. Helping your child cope with chronic pain

Angela Garcia, MD, is a pediatric physiatrist at the Children’s Hospital of Pittsburgh. She takes us into the hospital’s pediatric rehabilitation program to explain how her team works to improve functioning in children with chronic pain. The program’s goal is to reduce pain enough to able to go to school, play sports, or participate in typical activities for each child. Garcia describes the multidisciplinary team that aims to find the best therapeutic options such as psychological and behavioral therapy, group sessions where children can meet other children with similar issues, physical therapy, and acupuncture, which can interrupt the nerve signals that perpetuate pain.

That’s Pediatrics, December 2023

5. The importance of genetic testing

Gay Grossman and Paul Kruszka, from GeneDX, a genetic testing organization, discuss the importance of comprehensive genetic testing. Oftentimes, children remain undiagnosed because their underlying disease wasn’t included in the genetic test they previously took, and a comprehensive test is needed. They explain types of comprehensive testing, such as whole genome sequencing, which analyzes a patient’s entire genome, and whole exome sequencing, which analyzes protein-coding regions. Grossman and Kruszka also approach insurance coverage and how to advocate for your child to get genetic testing as fast as possible.

Once Upon a Gene, Episode 210

6. The truth about therapies and early interventions

Host Lauren Lowery shares thoughts about why you shouldn’t believe that if you do enough research, you will find the one missing therapy that will help your child reach milestones. She argues that this sort of thinking can leave you obsessed and exhausted, and it can leave you incapable of living in the moment with your child. Lowery reminds you to accept that every child has limitations and that your child may not achieve certain milestones, no matter how far and wide you search for therapy. She asks you to resist the urge to search endlessly, and to ensure you are not overburdening your child as you strive to be the best parent possible.

Overcome the Overwhelm for Special Needs Moms, Episode 111

7. A parent’s guide to sleep and autism

Whitney Casares, pediatrician and founder of Modern Mommy Doc, and mother of two children with special needs, addresses parent questions and shares practical strategies to improve your child’s sleep. Casares encourages you to keep a consistent routine in line with your child’s needs for an easier bedtime. She also offers important tips, such as being physically active during the day, particularly outdoors, and limiting screen time. Casares also tackles the role and benefits of supplementing with appropriate amounts of melatonin, a naturally occurring hormone that helps regulate sleep, to help children with autism sleep more consistently.

The Autism Dad, Episode S6E58

8. Understanding neurodivergent interoception

Occupational therapist Kelly Mahler, who specializes in interoception — our body’s ability to understand its internal state, such as feeling hunger or cold — discusses the effects of extremes and variances of interoception awareness. In neurodivergent children, including those with attention deficit hyperactivity disorder (ADHD) or autism, these variations can affect how they feel connected to their bodies. For example, they may have difficulty feeling hunger or cold, thereby feeling disconnected from their bodies. On the other hand, they can feel intensely connected to their body, which can increase their anxiety. By exploring what happens neurologically when children experience interoceptive variations, Mahler highlights the importance of helping your kids understand their unique body signals, and offers effective strategies to help them do this.

TILT Parenting: Raising Differently Wired Kids, TPP352

9. A look at autism from adolescence into adulthood

Christine and 23-year-old Abbey Romeo are the mother-daughter duo who appeared on the Love on the Spectrum U.S. television show. In this episode, Christine describes how she supports her daughter through life with autism, and Abbey shares how she learned to overcome the challenges associated with growing up with autism. Also featured is Wilfreda Lindsey, a neurologist at the Kennedy Krieger Institute, and associate professor of neurology at the Johns Hopkins University in Baltimore, who discusses various symptoms, available therapies, and how you can support your children from childhood into adulthood. Brain & Life includes links for more info, such as with the Association for Science in Autism Treatment, which provides scientifically proven behavioral, developmental, and educational approaches.

Brain & Life, December 2023

10. Elopement: When autistic children elope

Hosts Todd and Amanda Johnson share their personal story, reflecting on their childhood experience of elopement. They offer insights into the reasons why autistic children elope and discuss proactive steps you can take to manage any fear of your child’s potential elopement. They further touch on the guilt and isolation that parents may feel during this experience. Overall, they hope their reflections provide guidance for parents in this situation.

Not An Island, December 2023

11. ADHD and honoring your child’s experience

Debbie Reber is a parent of a neurodivergent child and the founder of Tilt Parenting, an organization working to assist parents as they adjust to raising their neurodivergent children. Reber shares tips on how you can make that change, from dealing with diagnosis to having realistic expectations for your child. Her perspective is that as a parent of a neurodivergent child, you first need to understand your feelings and beliefs regarding your child’s condition, which might leave you stuck in a continuous and exhausting circle of never-ending search for better treatments and unattainable milestones. Only then you can move forward embracing your child’s strengths, and help them progress. 

Brave Together, December 2023

12. Setting boundaries and valuing time

Hosts Mike and Kristin Berry, parents of eight adopted children, review their 2023 ups and downs in special needs parenting. They highlight how focusing on your child’s needs instead of their behavior can help manage emotionally intense responses in neurodivergent children and adults. The hosts also address the importance of setting healthy boundaries with adult children and the challenges in advocating for adults. They further discuss the limitations of time, and the need to value every moment.

The Resilient Caregiver, December 2023

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