For three decades, I thrived in the advertising world, crafting award-winning commercials and two-page spread campaigns for outdoor brands like Skidoo, Red Wing Shoes, and Berkley Fishing. It was a career that allowed me to tap into my God-given creativity.
By 2015, I had transitioned more towards independent filmmaking, having produced and directed a film titled “Cracked Ice” that aired on the Hulu network. Leveraging this momentum, I had several other films in the works.
But first, let me share the backstory that brought unexpected changes.
In January of 2002, I had a dream where my wife and I were given a blanket with a baby boy wrapped inside, followed soon after by a little girl. We interpreted the dream metaphorically as two parts of a photography business.
However, in August of that year, my wife and I were unexpectedly approached by someone we had just met about adopting a baby boy. She didn’t know us or about the dream.
Without hesitation, we embraced the opportunity. A week later, we met the birth mother, and by mid-October, we joyfully brought our son home from the hospital.
Two years later, the same birth mother asked us to not only adopt our daughter, but also help deliver her.
We were aware that the birth mother had consumed alcohol during the pregnancies. However, we were naive about the potential implications for our family, particularly the challenges our son would face from prenatal alcohol exposure.
As amazing as the dream-to-adoption story is, the excitement eventually gave way to confusion as our son’s behaviors became increasingly turbulent and perplexing. He fell behind on developmental milestones, had difficulty sleeping, struggled to understand consequences, and the list went on. Yet, he was also smart, funny, highly creative, and a gifted athlete – his soccer team went undefeated and won the state tournament with him playing every minute.
By the time our son reached eighth grade, my wife and I were bewildered by unanswered questions. We tried six different schools, numerous therapy programs, and after-school activities, but none of the professionals pointed us in the right direction.
All these efforts stemmed from our relentless pursuit to find a supportive and understanding environment for him. Finally, in 2014, when he was fourteen, we were able to connect the dots between prenatal alcohol exposure and his behaviors. The clarity came through his FASD diagnosis (Fetal Alcohol Spectrum Disorders).
This diagnosis led us on a quest to learn how to better parent our son for a condition we knew nothing about.
FASD is an umbrella term for a spectrum of mild to severe brain and body effects caused by alcohol exposure in the womb. It often lacks physical traits, and each person has unique strengths and challenges requiring lifelong support.
I’ve learned that FASD is significantly more prevalent and complex than autism. In fact, it’s the world’s leading developmental disability. It’s also often misdiagnosed as ADHD, autism, learning disorders, and more. Most importantly, it’s entirely preventable.
In my view, four main reasons contribute to FASD’s hidden prevalence: One, parents rightfully hesitate to share their stories. Two, alcohol is widely accepted as a legal drug. Three, there’s a disconnect between understanding alcohol use during pregnancy (a glass or two or more) and misinterpreting behaviors, especially in early teens (often seen as rebelliousness rather than a lack of ability). Four, over 90% of people with FASD lack outward physical traits associated with this condition.
According to the CDC, 1 in 7 women admit to drinking alcohol during pregnancy, impacting over 14% of the U.S. population. Current research shows 1 in 20 school children have FASD, with new research suggesting the number may be closer to 1 in 14.
It’s important to allow ourselves space and time to understand this prevalent condition. Many people exhibit behaviors that are difficult to interpret. However, many of these same individuals are also highly creative and need our support and love.
Because there is such a dearth concerning awareness and understanding about FASD, it became apparent that the momentum mentioned earlier that had been gained for films, needed to shift towards this issue.
What has evolved, is a comprehensive media project to called “Embraced.” The project centers around a composite fictional character (based on real-life stories) named Zak who will represent and help audiences understand FASD. We just completed the first draft of a novel and a film script titled “Embracing Zak”. Other aspects of the project in development include: a documentary, a book series for caregivers, accreditation training for professionals—many of these will be released later this year.
I’m very thankful for this journey and what God has been teaching us through our son’s disability. There was a time the darkness of not understanding, felt overwhelming. Today, the chaos this darkness once created in our home has turned into hope. We have better tools for working with our son—comparatively, there is very little chaos before his diagnosis, and our son is doing well.
A clip of a few interviews can be found at: embracedmovement.org/preview
Joel Sheagren has over 30 years of production and filmmaking experience and 21 years of FASD-parenting experience. He is motivated by strong stories, compassion, and empathy toward people diagnosed with FASD and those that love them.
Source: Special Needs Parenting- Key Ministry
