Breaking Stigmas: Insights from Jodee Kulp on FASD and Community Support

Interview with Jodee Kulp

Q: At what point did you know your story needed to be shared, and how did you navigate the process of ensuring that everyone involved was comfortable with opening up such a personal journey?

One hundred interviews from 2017 to 2024 with persons living with neurodiversity, their loved ones, and professionals who care. Each story pointed to the need to share and expose the truth. Embracing ZAK is a collaboration of characters and life stories melded. The book is a tribute to our beloved daughter, who lived life unabashedly, lighting the torch for FASD advocacy.

Q: When the book was finally complete, what kind of response did you receive from the people who appear in its pages?

“Wow!”

Q: How long did it take you to bring this book from the first idea to the finished manuscript?

The initial request to publish a book took 9 months. (Laughs) It was full of life and ready before September 9, 2024 - International FASDay. I am the co-founder of Red Shoes Rock FASD Aware, an international grassroots movement to break stigma, build awareness, and create voices of living experience.

Q: Since this book was created with multiple authors, can you describe what that collaborative process looked like?

I was the original and final author of Embracing Zak; however, the collaborative process and contributions of the Embraced Movement Team and FASD Meliorist Team were vital in accessing and assessing what was written. Together, a team of seven has contributed to each other personally and professionally. None of us had the finances to take on such a significant endeavor, but each of us had years of professional and living experience to do individual pieces and collaborate. We all had a personal interest in leaving a lasting legacy for the next generation. Stories can change lives more than research because they resonate in the heart and mind, rather than just the mind. It was an honor for me to include each person on the cover of my completed book.

Did the experience of Zak and the Riverdale community align with what we found in our lived experience of parenting, being individuals with FASD, and professionals? That involved examining this issue from a myriad of lenses. I was the conduit between the three-person movement development teams.

• The Embraced Movement Team - Joel Sheagren, a filmmaker, began the Embraced Movement in 2017 after his son’s diagnosis of FASD. I served as an FASD parent consultant on the project, which involved interviewing over 100 professionals, caregivers, and individuals with lived experience. When COVID-19 arrived, we conducted Zoom interviews. In 2023, we changed our initial transmedia directions after Justen Overlander, a filmmaker, actor, and producer, asked if I would consider rewriting The Whitest Wall 20 years later. I began writing. After the completion of Embracing Zak, Joel and Carl Young, an FASD advocate and person with living experience, joined forces to write “Embracing Hope”, a guidebook for parents. We are just beginning fundraising for a feature film, Embracing Zak, and I take this moment to ask for support and funding.

• The FASD Meliorist Team, comprising authors and educators Marcia Chambers, “Fun and Games, Math Concept Books 1 &2,” and Deb Evensen, “13 Moonbeams,” in the realm of special education for neurodiverse individuals, offered a behind-the-scenes look at school life. Antonia Rathbun Lindsey, a therapist and author of “Parenting Your Porcupine”, has worked with thousands of individuals with FASD and the people who love them. Patti Kasper, author of “Sip by Sip”, counselor, and podcaster, offered professional and lived experience insight.

Q: Why was it important for you to highlight FASD, and what do you hope readers gain in terms of awareness and empathy?

Highlighting Fetal Alcohol Spectrum Disorders (FASD) in “Embracing Zak” was deeply important to me because too often, people with FASD remain misunderstood, marginalized, or unfairly judged due to the stigma and systemic barriers they face. In the US, recent research suggests that as many as 1 in 20 children—up to 5% of the population—may be affected by prenatal alcohol exposure, making it much more prevalent than commonly recognized.

For example, MS is a well-known disabling condition compared to FASD. While Multiple Sclerosis (MS) is widely recognized and affects about 0.3% of the US population, Fetal Alcohol Spectrum Disorders (FASD) are far more common—impacting an estimated 2-5% of Americans—yet remain profoundly misunderstood and overlooked. Individuals and families living with MS benefit from strong advocacy networks, public rallies, and consistent community support, with research and resources readily available. By contrast, families facing FASD often experience isolation; forced to educate teachers, medical professionals, and even neighbors about a condition shrouded in stigma and blame. This lack of understanding means that children with FASD and their loved ones are frequently denied the support and compassion extended to those with better-known diagnoses, despite their potential for remarkable brilliance and resilience. This difference calls communities to champion inclusion and empathy over ignorance.

Many families, educators, and medical professionals still lack awareness, sometimes responding with violence, punitive discipline, or oppressive treatment and labels that further isolate individuals with FASD rather than supporting their unique needs.

I hope that readers gain both awareness and empathy—understanding not just the challenges, but the brilliance and vibrancy within those living with FASD. Far from the prejudices and bigotry of those who ignore or belittle difference, a person with FASD can bring light, creativity, and new perspectives to their communities. Their contributions—be they through art, humor, resilience, or deep empathy—reflect a richness that society desperately needs. I hope readers walk away knowing that every person, regardless of diagnosis, deserves dignity, respect, and the opportunity to thrive as themselves. Compassion and understanding are far more powerful than ignorance, and by embracing that, communities can be transformed for the better.

What role do you believe compassion from family, friends, and community plays in helping individuals with neurodiverse needs thrive?

Through Zak and his circle of friends and family, readers are invited to reflect on their own biases.

Compassion from family, friends, and community is the foundation for helping individuals with neurodiverse needs truly thrive. When people feel safe to be themselves—free from judgment or pressure to conform—they can express their unique perspectives, talents, and challenges authentically. Compassion creates an environment where having a voice and a sense of belonging is not only accepted but celebrated. This safety empowers neurodiverse individuals to participate, advocate, and grow; it encourages curiosity and trust, allowing differences to be seen as strengths rather than obstacles. In such a caring space, every person’s being is valued, fostering resilience, confidence, and meaningful contribution for all.

Was there a moment in your own life when you realized just how easy it is to misunderstand others—and how did that shape your writing?

Though FASD touched the lives of many people I knew, I lacked compassion because I did not understand. Fetal Alcohol Spectrum Disorder (FASD) remains a very misunderstood and cloaked disability, with less than 2% of people struggling with the repercussions of exposure to alcohol in the womb, and that has changed their lives. I found that over the forty years I have known about this lifetime neurodiverse experience, it was when I adopted a failure-to-thrive infant and reared her through adulthood, when I listened and embraced others with a diagnosis as peers or clients, and when I took an honest inventory of myself, I finally understood. At the end of my daughter’s life at age 38, I realized the very battles she fought were also mine. I believe my intuition and compassion for neurodiverse individuals have deepened because I’ve gained a deeper understanding, albeit unintentionally.

Q: Your story is described as “eye-opening.” What has been the most surprising reaction you’ve received from readers since the book’s release?

The honest expression of, “I never knew this, Zak changed me.”

Q: The narrative blends mystery with lessons of belonging, identity, and resilience. What made you choose a mystery as the backdrop for such important themes?

I originally chose mystery for this series, “Bootleg Brothers,” in 2004, with The Whitest Wall as a vehicle to share hidden wisdom. Given that Zak was 20 years later, the events that had occurred only made sense to continue the original mystery with both old and new characters in the exact location.

Q: Which character, besides Zak, surprised you the most in how they developed while writing?

Throughout the process, I was fortunate to have four incredible women whom I respected and felt safe discussing the deepest character flaws and assets with. One of the women, Marcia Chambers, with a keen eye for grammar and an educator for over forty years, challenged me on what John Mason looked like and who he was as a special education teacher. We had both worked with the S.M.A.R.T. A Chance to Grow Smart program to help with student neurodevelopment. My daughter was in the ICU at the time, and I purposefully chose to give limited character appearances to the Zak participants, leaving that to the reader’s imagination. I laughed and said, “Who do you think he is? He is just emerging, take it and run with it.” The following day, in the dim lights of the ICU amid beeping and blinking lights, John Mason arrived as a spectacular and impressive character in a text message on my phone in Google Docs. “Wow, spot on, Marcia. I have known in my safety work, other men and women with those hearts of the valiant. John Mason, you have been born.”

Q: You’ve written a story that opens hearts and minds. What advice would you give to communities or families wanting to create more inclusive and compassionate spaces for those who experience the world differently?

For families and communities, educate yourself together and embrace curiosity. 

• Read stories—like Zak’s—featuring diverse perspectives in schools and book groups.

• Listen to the audio of Zak with your partner to get to know and understand these characters. 

• Allow these stories to spark discussion, empathy, and a willingness to challenge your habits and biases.

Inclusion starts not with solutions, but with understanding. My advice is to begin with listening—truly, deeply listening to those whose perspectives and experiences may differ from your own. Invite open conversations, affirm each person’s voice, and reject assumptions that there is only one “right” way to experience or respond to the world.

Compassion means noticing when someone feels excluded or misunderstood—and taking gentle, intentional action. Small gestures matter: a warm welcome, asking about needs, or adjusting environments to foster comfort (whether that’s quiet spaces, flexible routines, or honoring sensory differences).

Community grows when we honor every person’s dignity and recognize that compassion, awareness, and flexibility transform inclusion from a value into real, everyday action.

When you nurture empathy, practice awareness, and are willing to learn and change, you become the kind of community that not only embraces difference but allows every member to thrive truly. And one last thought, celebrate difference as an asset, not a hurdle. Champion strengths, encourage self-expression, and make it clear that belonging isn’t dependent on sameness.

If a reader walked away with only one lasting message from Embracing Zak, what would you want that to be?

Knowing is your first step to change.

Looking back on your journey, what advice would you give to others who hope to turn their personal experiences into meaningful stories for the world?

Write your first sentence.

What’s next for you as an author—are there new projects or future books already in the works?

Tiger Butterfly is the sequel to The Whitest Wall, written in 2004 and published in 2008. It is 75% complete and deals with the complexities of remaining silent during turbulent times in our lives.

Thank you, Jodee, for sharing your profound insights and experiences with us.

Your dedication to advocating for individuals with FASD and your commitment to fostering understanding and compassion are truly inspiring. The stories you’ve gathered and the collaborative efforts behind "Embracing Zak" highlight the power of community and the importance of empathy in our lives.

We appreciate your time and willingness to open up about such a personal journey. Your words will undoubtedly resonate with our readers and encourage them to reflect on their own perspectives. We look forward to seeing how your work continues to make a difference in the world.

Thank you once again for this enlightening conversation!