Navigating Parenthood and Planning: A Father’s Story of Love, Advocacy, and Inclusion

What It Means to Be a Parent and a Lifelong Advocate

Becoming a parent is always a life-changing experience, but when a child is born with special needs, the journey can bring unexpected challenges, emotions, and a steep learning curve.

For my father, Carmen Mastroianni, that journey began in 1977 when my older brother, Dan, was born with Down syndrome. My parents had no idea what to expect. There was no internet to turn to for information, no Facebook groups filled with other parents who had walked this path, and little in the way of formal support systems. They were left to figure things out on their own, and they quickly realized that no one was going to advocate for Dan if they didn’t.

In Episode 7 of The Death Readiness Podcast, I sit down with my dad to talk about the reality of raising a child with special needs, the fight for inclusion in schools and sports, and how my parents made long-term planning decisions. It’s a conversation about love, resilience, and the responsibility of planning for the future.

A Shocking Diagnosis and an Uncertain Future

Dan’s diagnosis wasn’t something my parents had prepared for—because at the time, people didn’t think to prepare for something like that. The world in 1977 wasn’t designed for families like ours, and my parents had to decide, quickly, what kind of life they were going to create for Dan.

Finding a Way Forward

Someone told my dad, “Find an early intervention program.” But in August, most of the nonprofit organizations in their area were closed. He left messages anywhere he could, and eventually, he got a call back from the Early Childhood Education Center.

That’s how Pam Williams entered our lives. She worked with my mom and Dan, empowering them to create their future.

My mom later went to work for the Early Childhood Education Center, helping other families who had children with Down syndrome navigate the same uncertain waters.

The Fight for Inclusion

Advocating for Dan didn’t stop with early intervention. When my family moved to Long Island, my parents expected that Dan would be mainstreamed into the same school my sister and I attended.

The school district had other plans.

Nevertheless, my parents persevered and Dan attended school with an aide, navigating an education system that wasn’t designed for him. But, he thrived in the ways that mattered. He made friends. He became the manager for the high school football team and the softball team. He was involved, connected, and supported by a community that might not have embraced him if my parents hadn’t insisted that he belong there in the first place.

Sports were a big part of Dan’s life. He played soccer with the Baymen’s Soccer League, thanks to a coach, Val Winter, who welcomed him with open arms. And, he excelled at Special Olympics swimming.

Planning for the Future: The Hardest Conversations

One of the biggest fears for any parent of a child with special needs is: What happens when I’m gone?

Dan saw both me and my sister leave for college. He realized that he didn’t want to live with my parents forever and made the decision to move into a group home. It was a difficult transition at first, but ultimately, it was the right decision.

The transition wasn’t seamless. Dan was nervous when he first moved into the home, and the first placement wasn’t ideal. But he knew it was a step toward the future he wanted. He says now, looking back, that he’s glad he did it. 

My parents set up a special needs trust to ensure Dan’s future financial security. The reality of government assistance is that any misstep—like earning too much money or inheriting assets the wrong way—can disqualify someone from critical benefits like Medicaid. 

Today, Dan lives in a home he loves. He volunteers daily in the laundry facility of a local nursing home, a job in which he takes great pride. He comes to visit my dad often, spending weekends watching Netflix, playing pool, and swimming in the lake. 

Dan’s Perspective: A Life Well Lived

One of the most moving moments in this episode was when I asked Dan how he thought having Down syndrome had affected his life.

"I don’t think it affected me at all," he said.

To him, his life is exactly as it should be. He’s had struggles, but he’s also had friendships, purpose, and love. 

That’s the life my parents built for him.

That’s the power of advocacy.

That’s why planning matters.

Why This Story Matters

This conversation with my dad was more than just a look back at our family’s history. It was a reminder of how much effort it can take to build a life of inclusion, security, and dignity. My parents didn’t know what they were doing at first, but they figured it out.

And Dan? He’s thriving.

In Episode 9, I’ll be sitting down with Kristen Lewis, a special needs estate planning attorney, to discuss how families can create solid plans for their loved ones’ futures.

Want to hear the full story? Listen to the episode to hear Dan’s own words, my dad’s reflections, and the legacy of advocacy my parents built.

Listen & Follow: The Death Readiness Podcast is available on Apple Podcasts, Spotify, and YouTube.