What does it take to become a "Swiss Army Knife of Disability Advocacy"? For John Fela, it began with the birth of his son with autism who is now 16 and nonverbal. His journey from confused parent to national advocate reveals the profound challenges and unexpected gifts that come with raising a child with disabilities.
The path wasn't always clear. John candidly shares his initial struggle to accept his son's diagnosis and find his footing as a father when traditional parenting roles were upended. "What I struggled with in the beginning was finding my role," he explains. "I couldn't be the breadwinner, I couldn't manage all the therapies—so who was I as a parent, as a husband, as a father?" This identity crisis eventually led him to discover his true gifts in advocacy, networking, and relationship-building.
Education presents particular challenges for families navigating disability. John offers valuable insights about the realities of public versus private schooling, cautioning parents not to be deceived by appearances: "Anything looks good on a website." His family ultimately made the difficult decision to place their son in a residential facility a thousand miles from home—a choice requiring tremendous surrender but proving beneficial for their son's development.
Communication with a nonverbal child requires creativity and patience. Through a combination of body language interpretation, basic signing, and assistive technology, John has found ways to connect with his son. He emphasizes the importance of addressing individuals with disabilities directly rather than speaking about them as if they aren't present: "He doesn't speak, but he does hear."
The conversation takes a powerful turn when John discusses the vital importance of community support. Having transitioned from feeling completely alone to building a national network, he now helps other families find their lifelines. His work with Joni and Friends, a global Christian disability ministry, allows him to help churches create welcoming environments for people with all types of disabilities—visible and invisible.
Looking toward the future, John confronts the reality many special needs parents face: what happens when they're no longer there? With his son being an only child, creating intentional community becomes even more critical. Who will check on him, celebrate birthdays, or simply offer a hug?
Whether you're navigating disability personally or seeking to better support those who are, John's story offers profound wisdom about finding purpose through unexpected challenges and building communities that sustain us through life's most difficult journeys.
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