In this episode of Living with FASD, host Patti Kasper and fellow author & self-advocate Helen Simpson explore their personal journeys with Fetal Alcohol Spectrum Disorder (FASD), the difference early diagnosis can make, and the importance of advocacy and community support. They share their experiences with bullying, the challenges of parenting children with FASD, and the need for more resources and understanding in the medical and educational systems. They also discuss the power of storytelling and literature in creating positive narratives for those affected by FASD, emphasizing the importance of compassion and support within the community.

Takeaways

Early diagnosis can significantly change the support and resources available to individuals with FASD.

Social challenges and bullying are common experiences for those with FASD.

Literature can empower children with FASD by providing positive narratives.

Advocacy is crucial for improving resources and support for individuals with FASD and their families.

Parenting children with FASD requires patience and understanding of their unique challenges.

Community support through social media has transformed advocacy for FASD.

There is a need for more programs focused on women in recovery from substance abuse.

Compassion and understanding are essential in addressing the challenges faced by birth mothers of children with FASD.

Self-care and finding joy are important for individuals living with FASD and their families.

If you want to reach Patti to discuss either FASD training or life coaching, you can schedule a call using this links: https://calendly.com/kaspertrainingandcoaching/consultation . Additional training topics can be found on her website, www.patriciakasper.com .

If you want to pick up a copy of Patti’s book, Sip by Sip: Candid Conversations with Adults Living with FASD, go to either www.books.by/yourfasdcoach or Amazon (https://a.co/d/3XLnCyw ) Both are print-on-demand from a printer near you, but books.by pays its authors a few more dollars in royalties.

If you want to pick up a copy of ABC’s of FASD, here is Helen’s Amazon link: https://a.co/d/fXI9grB .

Chapters

00:00 Introduction to Living with FASD

01:46 Personal Journeys: Diagnosing FASD

09:28 The Impact of Diagnosis on Life

14:22 Creating Positive Narratives through Literature

20:41 Advocacy and Community Support

25:04 Parenting Challenges and Insights

30:41 Future Aspirations for FASD Awareness

36:34 Compassion and Understanding in the FASD Community

In this episode of Living with FASD, host Patti Kasper talks with AJ Locascio, founder of Umbrella ND, about the emotional regulation challenges neurodivergent people face, including those with FASD, autism, and ADHD. They explore how sensory environments, trauma histories, & everyday microaggressions can lead to dysregulation, panic, and disconnection, and why understanding individual sensory profiles and creating supportive spaces is so important. AJ shares her journey from middle school teacher to community advocate, emphasizing the value of connection, self-advocacy, and accommodations in schools, medical settings, and public spaces.

Patti and AJ also dive into language, communication, and the role of curse words as a coping strategy for some neurodivergent individuals, explaining how the brain can retain emotionally charged words even when other language skills are compromised. They call for more nuanced, context-aware interpretations of behavior that prioritize safety, self-awareness, and emotional regulation over compliance. Throughout the conversation, they highlight how advocacy is both necessary and exhausting, reinforcing that no one should have to do it alone and that community support is essential for emotional well-being.

Takeaways:

• Emotional regulation is crucial for neurodivergent individuals.
• Microaggressions can significantly affect emotional responses.
• Supportive, sensory-aware environments help reduce dysregulation.
• Knowing one’s sensory profile allows for better support and accommodations.
• Community and connection are vital for long-term well-being and advocacy.

Memorable quotes:

• “When we are losing our ability to use language, we hang on to any words that get a big reaction from people.”
• “There’s no such thing as a bad word; it’s context specific.”
• “Connection can definitely happen even when you’re alone.”
• “Self-awareness is the key to becoming regulated when you’re dysregulated.”
• “Advocacy is exhausting; we all need advocates.”

Stay connected:

• Like, share, and follow the Living with FASD podcast to help spread awareness and understanding.
• Contact Patti: livingwithfasdpodcast@gmail.com | www.patriciakasper.com
  Schedule a complimentary call: https://calendly.com/kaspertrainingandcoaching/consultation
• Patti’s book, Sip by Sip: Candid Conversations with Adults Living with FASD: www.books.by/yourfasdcoach or Amazon.
• Connect with AJ and Umbrella in D: www.umbrelland.org | All AJ’s links: https://dot.cards/ajlocashio

Recommended resources:

• Jaak Panksepp’s TED Talk: https://www.youtube.com/watch?v=65e2qScV_K8
• Burnout by Emily & Amelia Nagoski: https://a.co/d/eJaSFDR

This conversation explores the complexities of communication challenges faced by individuals with neurodivergence, particularly focusing on FASD and autism. Host Patti Kasper and special guest Carolyn Kiel, host of the podcast Beyond 6 Seconds, discuss the importance of storytelling, the impact of sensory overload, and the need for understanding and support within the neurodivergent community. They emphasize the significance of recognizing diverse experiences and the necessity of inclusive conversations that involve those with lived experiences. The discussion also touches on the stigma surrounding prenatal alcohol exposure and the importance of self-advocacy and grace in navigating these challenges.

Takeaways

Stories are relational and bring emotional learning.

Communication challenges vary widely across neurodivergence.

Expressive language skills can mask comprehension deficits.

Sensory overload can lead to communication breakdowns.

Safe spaces are crucial for emotional regulation.

Self-regulation strategies are essential for neurodivergent individuals.

Understanding one's neurodivergence can lead to self-acceptance.

Inclusive conversations are necessary for effective support.

The stigma of prenatal alcohol exposure affects diagnosis.

Support should be tailored to individual needs.

To reach Patti Kasper, perhaps to suggest topics or guests, or to ask questions, or even just to say hello, email her at livingwithfasdpodcast@gmail.com .

To reach Patti to explore FASD Life Coaching for yourself as an adult or as a parent of a little, or to arrange for professional development or community agency training on FASD, you can arrange for a consult at https://calendly.com/kaspertrainingandcoaching/consultation

To order a copy of Patti’s book, Sip by Sip: Candid Conversations with Adults Living with FASD, visit books.by/yourfasdcoach or Amazon. (Both are print on demand at a printer near you, but books.by offers its authors a few dollars more in royalties.)

To listen (and subscribe) to Carolyn’s podcast, Beyond 6 Seconds, you can find it here: https://open.spotify.com/show/43W7RSYBMRsT4ktoFSHpau?si=77ec834a13c443a9

You can also visit her website at www.beyond6seconds.net.

Please remember to like, subscribe & share this podcast so that more people can discover it and learn about FASD.

Chapters

00:00 Introduction and Collaboration

02:48 The Power of Storytelling

04:01 Communication Challenges in Neurodivergence

10:26 Expressive vs. Receptive Language Skills

18:31 The Impact of Sensory Overload

25:08 The Importance of Safe Spaces

30:33 Finding Balance and Self-Regulation

34:19 Understanding Neurodivergence

39:22 The Stigma of Prenatal Alcohol Exposure

46:30 The Need for Inclusive Conversations

51:44 Supporting Neurodivergent Individuals

56:55 Conclusion and Future Topics