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Life with Isahiah: A Journey of Profound Autism, Triumph and Hope

Life with Isahiah: A Journey of Profound Autism, Triumph and Hope

By Jennifer McGee

In a world where our lives are intertwined with technology and we’re constantly communicating and connecting, imagine being unable to utter a simple request for a glass of water or tea. This stark reality is what my 18-year-old nephew, Isahiah, faces every day.

Life with Isahiah: A Journey of Profound Autism, Triumph and HopeAt the tender age of 3, Isahiah was diagnosed with autism spectrum disorder, setting him on a unique path filled with challenges and triumphs. For much of his life, he has relied on the unwavering support of others to navigate through the simplest of tasks, from basic hygiene routines to communicating his needs and desires.

When Isahiah came to live with my husband and me at 15, he had no functional way to communicate and very few independent living skills. While he couldn’t articulate his needs, we knew they were there, waiting to be understood. Determined to bridge this communication gap, we embarked on a journey to unravel the complexities of his diagnosis and explore avenues to help him express himself.

Life with Isahiah: A Journey of Profound Autism, Triumph and HopeThe road ahead was challenging, paved with uncertainties and setbacks. We delved into the realm of therapy, embracing a multifaceted approach that included Applied Behavior Analysis (ABA), Speech, and Occupational Therapy alongside Picture Exchange Communication System® (PECS®) and other Augmentative and Alternative Communication (AAC) methods—each day presented new obstacles, with Isahiah oscillating between moments of progress and episodes of overwhelming frustration.

One of the greatest hurdles we faced was finding suitable services for Isahiah. Traditional centers are prepared to support younger students who have similar challenges, but they were not equipped to help Isahiah due to his age, forcing us to seek private, at-home support. It was a tumultuous period marked by countless hours of dedication and perseverance.

Life with Isahiah: A Journey of Profound Autism, Triumph and HopeAmidst the uncertainty, PECS emerged as a beacon of hope in Isahiah’s journey.  Once we found that first motivator (gummy bears), PECS gradually evolved into a powerful tool for communication. The simplicity of picture cards provided Isahiah with a tangible means to express his desires and preferences, fostering a newfound sense of agency and empowerment.

Our home became a sanctuary of growth and learning, with therapists incorporating PECS and other communication strategies into Isahiah’s daily routine. From visual schedules to communication boards to using a speech generating device, each aspect of support was tailored to suit Isahiah’s unique needs, paving the way for meaningful interactions and self-expression.

Life with Isahiah: A Journey of Profound Autism, Triumph and HopeYet, the journey was far from easy. We grappled with a shortage of specialized services and faced skepticism from those who deemed Isahiah “too old” for intervention. But through unwavering determination and the support of dedicated professionals, we forged ahead, refusing to accept defeat. We celebrate every win, big or small, from going shopping and pushing the cart and getting his own fountain drink at the convenience store to traveling by airplane around the country and attending large work events with us.

Life with Isahiah: A Journey of Profound Autism, Triumph and HopeToday, Isahiah’s life is a testament to the power of perseverance and unconditional love. While challenges persist, he continues to make strides in his journey toward independence and self-discovery. As we look towards the future, our hopes for Isahiah are simple yet profound. We envision a life filled with boundless opportunities where he can embrace his uniqueness and thrive in a world that celebrates diversity and inclusion. Through his story, we seek to inspire others facing similar challenges, offering a beacon of hope in the face of adversity.

In the end, Isahiah’s journey is not just about overcoming obstacles; it’s about rewriting the narrative of what is possible and redefining the meaning of success for those with profound autism. It’s a journey of triumph and hope, guided by the belief that with love, patience, and unwavering support, anything is possible. In the case of Isahiah, PECS played a vital role in unlocking his potential, serving as a testament to the transformative power of personalized, comprehensive therapy approaches.


Jennifer McGee is a parent and author. Her first book, Izzy Can’t Talk, is available in hardcover and e-book on Amazon and other booksellers. Learn more about Jennifer’s mission to create inclusive art on her website inclusivearthouse.com. Read Jennifer’s full interview with Pyramid Educational Consultants, the home of PECS, at pecsusa.com.

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