In 2024, my world changed forever. I lost my father to prostate cancer—a man whose strength and love defined the very foundation of my family. He fought with everything he had to stay alive long enough to care for my mom, who was battling dementia. Even as his own health declined, he dedicated himself to keeping her safe and at home—the home where he had raised us with dignity, respect, and unwavering love.
My parents Ory and Mirella Giberstein’s 60th wedding anniversary
As the middle child of three, I learned early that family is everything. My dad, the son of a rabbi, and my mom, a Catholic debutante from Panama, immigrated from Venezuela in the late 1960s to build a better life together. They did it all on their own—no extended family, no village, just the five of us. Yet they created a world rich in love, laughter, and resilience—a world that gave me the strength to raise my daughter and my son with autism.
My parents were my lifeline. They were my son’s lifeline, too. Every day, they would come to care for Jason, offering an extra hand, a smile, and a gentle touch. They gave me the gift of time—to work, to advocate, to build a future for him. My mom and dad were not just grandparents; they were second parents to Jason, showing him love, acceptance, and stability that only family can provide.
As Jason grew older, he spent even more time with them. He would visit them daily, sharing meals, conversations, and laughter. He and my dad would talk for hours about cars—old cars, new cars, his favorite models. It’s where Jason’s passion for cars was born, nurtured by my dad’s warmth and interest. That companionship gave Jason not only joy but a sense of belonging—a safe space where he was always understood.
My son Jason and his Grandpa Ory
When my dad’s cancer worsened, the final months became a blur of doctor’s visits and heartbreak. My mom’s dementia brought episodes of fear and paranoia—sometimes, she didn’t even recognize the man who had spent a lifetime loving her. She would run from the house in confusion, and yet my dad never gave up. He kept her safe. He kept her home. Even in his last days, he wanted nothing but dignity and respect for her.
On Halloween, we knew. My brother gave Dad a haircut and a shave, a simple act of love he had been meaning to do for weeks. My sister dressed him in a costume—Dad always had a sense of humor, always telling us, “Don’t worry, be happy.” We called the ambulance. Mom had just entered memory care the night before, a necessary step to give Dad the peace he deserved.
I will never forget the moment I had to tell my dad that it was time—that there was nothing more the doctors could do. He said he was sorry he couldn’t be here for us anymore. We cried together. Then we called his sisters, his friends, and everyone who needed to hear his voice one last time. He kissed us all, and we took him home to hospice. He passed so quickly, with all of us around him—together as a family, just as he would have wanted.
And just like that, my natural supports were gone—my mom and dad, my lifeline. Their loss was shocking and painful. They weren’t just my supports; they were Jason’s, too. The ones who showed him unwavering love. The ones who nurtured his love of cars, who listened to his stories, who made him feel seen and valued every single day. The ones who gave him a sense of home and belonging.
Me and my dad at my wedding’s father-daughter dance.
Those relationships are not replaceable. No one can step into those shoes or offer that same sense of understanding, safety, and unconditional love. It leaves a heavy reality: Who can ever fill that role if they are not here? And even more frightening—what happens when I am no longer here to be his advocate, his guide, his champion? These questions weigh on my heart every single day.
It was my parents’ unwavering strength and support that gave me the courage to start the ELIJA Foundation, an organization dedicated to empowering Long Island’s Journey through autism and helping individuals with autism like my son Jason. Their love and pride in this mission lifted me through the challenges, and they were always the first to say how proud they were of what I was building for Jason and others like him. Losing them means losing that pride and encouragement—an ache that cuts deeply every single day.
For families like mine, natural supports are everything. They are the grandparents who babysit without judgment, the parents who show up at IEP meetings, and the siblings who text “I’ve got this” when things get hard. They are the foundation we build on—when services fall short, when the system doesn’t see us, when the world feels too heavy to carry alone.
Losing my parents has reminded me how essential these supports are—not just for my son with autism, but for me, too. They gave me the strength to be the parent, the advocate, the founder, and the leader that Jason needed. They taught me to stick together, to find strength in family, and to lean on each other when life feels impossible.
I don’t know what the future holds, but I do know this: natural supports matter. They make the difference between just surviving and truly thriving. And though my parents are no longer physically here, their love—their legacy of strength and unity—remains my guiding light. And while Jason no longer has those daily conversations with his grandpa about cars, I hold onto the memory of that bond, knowing it shaped the person he is today—and that love will always be part of his story.
Debora received her BA in Sociology from Hofstra University and is a Board-Certified Assistant Behavior Analyst. She serves as the Chief Executive Officer and Founder of The ELIJA School, Founder of The ELIJA Foundation, the ELIJA Farm, and ELIJA’s Transition Program and Services (TPS). Debora has volunteered her time to numerous autism groups such as Nassau County’s Department of Health Early Intervention Coordinating Council, New York State Association of Behavior Analysis, Nassau County Autism Coalition run by the County Executive and served as a board member of The Behavior Analyst Certification Board® (BACB®) for 5 years. She was appointed to the New York State Licensure Board for Applied Behavior Analysis in 2014 and served until 2018, when she stepped down to advocate for the advancement of the field in ABA. In 2021, she was appointed by the Governor to the Council on Developmental Disabilities. For the past 23 years, she has been providing advocacy to families and conducting training workshops to promote evidence-based instruction for families and educators who have been touched by autism. She has a 25-year-old son with autism.
