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Rare Parenting Podcast Roundup | January 2024

January saw many great podcasters sharing guidance, information, and stories. The episodes below cover a range of topics, such as special education, transition planning, race and neurodivergence, ABA therapy, filing taxes, martial relationships, setting aside careers for caregiving, and more! Have a listen directly from this article, and check out our previous roundups here!

1. Overcoming perfectionism and embracing support

Kristin Faith Evans, mother of two children with rare genetic disorders, shares how expectations and self-inflicted pressures can outweigh the joys of parenting. Evans highlights barriers faced by many special needs moms when searching for self-care, including the guilt that often accompanies mothers in this process and the stigma within conservative communities that often leads mothers to walk this path in solitude.  She reveals the powers of positive self-talk and embracing imperfection, and she reminds us that no one should be alone on this walk.

The Special Needs Mom Podcast, Episode January 24

2. Improving the Relationship with Your Significant Other

Michelle Purta, marriage coach, explores the challenge of balancing the demands of parenting a child with complex needs with nurturing a strong relationship with your spouse. She shares strategies that may help promote a harmonious family environment. Purta emphasizes the importance of maintaining an open attitude for effective communication with your children and your spouse. She also notes the importance of reflecting on the underlying causes of issues instead of only looking at things on the surface.  She addresses the 4R’s method—Reflect, Reveal, Repair, and Reconnect—to help manage conflicts and build stronger relations within the family. Her main message is that you do not have to choose between being a great parent and having a great marriage.

Parenting the Intensity, Episode 30, January 23

3. Special Education 101: What you need to know as a parent and caregiver

Valerie Burnett, a special education expert and grandmother of a child with special needs, discusses important things to know about special education, from early intervention to entering school. She reviews the federal and state resources available, how to access them, and how interventions are different according to the child’s age.  Burnett also shares her experience as a special education teacher and discusses available support, such as parent support and advocacy groups and the importance of enlisting an education supervisor. 

The Rare Advocates, Episode January 17

4. Transition Planning for Youth with Disabilities

Tomar Pierson-Brown, lawyer and director of a health law clinic in Pittsburgh, discusses transition planning—which refers to the coordinated process for guiding young people with disabilities to services beyond school, from adolescence into adulthood. Pierson-Brown discusses tips on how she works to ensure children have access to services according to their specific needs, focusing on education, employment, and independent life. She also underscores how the collaborations between legal services and hospitals may help address youth social determinants, which may impact their health outcomes.

That’s Pediatrics, Episode January 9

5. Parenting at the intersections of race and neurodivergence

Alongside guest moms parenting neurodivergent children, Jaya Ramesh and Priya Saaral, authors of the book “Parenting at the Intersections: Raising Neurodivergent Children of Color” discuss the challenges faced by families raising children of color with neurodevelopment differences. Ramesh, a psychotherapist specializing in neurodivergence, and Saaral, a play therapist and parenting coach, address topics like the complex process of identity development, navigating neglected identities, and how parents can raise awareness and get support from organizations and advocates to help their children be seen and respected.

TILT Parenting: Raising Differently Wired Kids, Episode January 16

6. A Mother’s Perspective on Raising Deaf Kids

Alaine Jacobs, a mom of 3 kids, 2 of whom were born deaf, supports and coaches parents of deaf/hard of hearing (DHH), primarily in North Carolina. Jacobs is also the host of the podcast Raising Deaf Kids. In this episode, she shares the challenges of discovering and embracing deafness in her family. From fostering unique forms of communication to breaking down stereotypes, Jacobs sheds light on the beauty and strength found in soundless bonds.

Surpassing Labels, Episode January 18

7. Parent’s Guide to ABA Therapy

Ashley Gibson-Stewart, board-certified behavior analyst, shares her experience of treating children and adolescents with autism. She explains what Applied Behavior Analysis (ABA) is versus what it was in the past and how it can be used by parents and therapists to support children without harming them. Gibson-Stewart recognizes the painful and traumatic experiences autistic children underwent with this therapy in the past and how lessons learned from past mistakes contributed to positive developments in practices over the years. By working closely with children and their families, it is possible to promote meaningful changes in children’s social behavior and improve their quality of life.

The Autism Dad, Episode Jan 17

8. From Grief to Advocacy in Autism Families

Hosts Todd and Amanda Johnson share their emotional journey of grief and acceptance, from the initial shock and denial to the fear of stigma and the comfort felt in acceptance. They also discuss how you can feel more connected with your child and how knowledge about autism can empower you to advocate for your child. Overall, they share a message of hope to parents facing the same challenges: “While the journey is challenging, it’s also rich with opportunities for growth.”  

Not an Island Podcast, Episode 8, Jan 14

9. Rebuilding Identity After Sacrificing Careers for Caregiving

Emily Crawford made the difficult choice of giving up her lifelong dream job in teaching at the pinnacle of her career when Chloe, one of her four children, was diagnosed with a rare disease called central conducting lymphatic anomaly at the age of 8. Crawford discusses the isolation and identity loss she faced and how it is important to stay connected with yourself during that grieving period. She also shares strategies that helped her adapt to her new role, such as attending mental health therapy, going to the gym, and engaging in social activities with people who support her.

Once Upon a Gene, Episode January 18

10. Becoming a Stay at Home Caregiver

Tristina Pontiakos, mother of three children, shares how she made the transition from a successful career in medical sales to becoming a stay-at-home mom to be able to provide the best care for her now three-year-old daughter with Spina Bifida. She discusses how she establishes the boundaries between being a mom and a caregiver and the delicate balance of motherhood with self-care and her own identity. Pontiakos also sheds light on support systems available at the federal and state levels that allow her to be both a stay-at-home mom and a paid caregiver.

Disability Parenting Podcast, Episode January 2

11. Tips for Filing Taxes for People with Disabilities

The host, Christina Kozik, shares tips you should know before you file your taxes. First, make sure your child is claimed as a dependent, which may also be true for an adult with a permanent disability living in the household. Also, depending on your child’s age and the family income, you may be able to qualify for tax credits, including the child tax credit. She advises you to think about medical deductions, where you can deduct healthcare expenses, including education aids, therapy, or home modifications. She also discusses setting up a special needs tax advantage savings account you can use to pay for expenses related to care.

Just Needs: Parenting Children with Disabilities, Episode Jan 31

12. Embryo and Miscarriage Genetic Testing

Kelly Loggenberg, registered genetic counselor at Next Biosciences, a company specializing in reproductive genetic testing, explores the advancements and complexities in this field. She discusses the reasons why couples opt for Preimplantation Genetic Testing for Aneuploidy (PGT-A), which is used to detect chromosomal abnormalities in embryos generated by in-vitro fertilization and the decision-making information it provides. Loggenberg also addresses when there may be the need to use noninvasive prenatal testing and the conditions it can detect. Loggenberg also discusses how genetic testing miscarriages is used to determine potential genetic causes for pregnancy loss and its role in the couple’s reproductive planning.

DNA Today: A Genetics Podcast, Episode #270, January 31

13. Transforming Your Mental Health

The podcast hosts, Mike and Kristin Berry, know that caring for children with behavioral issues can leave you exhausted and overwhelmed, which can have a negative effect on your mental health. They discuss practical steps you can take as a caregiver to improve your mental health. They suggest starting by creating soundbites that you constantly bring to mind to help you mentally navigate situations with your children. The hosts also share an action sheet to help you define your values and boundaries as a parent.

The Resilient Caregiver Podcast, Episode January 20

14. What I Wish I Had Known

The podcast co-host, Amy J. Brown, shares the top things she wishes she had known and done differently during her 31-year journey as a mother of children with mental health issues and attachment disorders. These include understanding that not everything is an emergency and that caring for children with behavioral issues is a long, slow walk—you have to take one step at a time. Acknowledging that not everything is your responsibility and recognizing that love can not heal everything can also save you from a lot of difficult moments.

Take Heart, Episode 152, Episode January 2

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