The Reality Behind the Progress

When people see Benji and Giulietta's program today, what they are seeing is not how things have always been. This is the result of two decades of work that included failures, dead ends, and crises that made us question whether we could continue.

The path was not straightforward. There were years when progress felt out of reach, when we were exhausted and desperate. The system offered no solutions, and we had to create something from nothing. There were crisis points that forced us to stop, reassess, and find the strength to start again.

Benji and Giulietta live with Phelan-McDermid Syndrome and have global apraxia. Apraxia means the brain cannot automatically coordinate the muscles needed for voluntary movements. For others, movements like reaching for a cup or buttoning a shirt are automatic. For Benji and Giulietta, nothing is automatic. Every movement has to be learned deliberately, step by step, with effort and repetition.

This includes verbal apraxia. Benji and Giulietta understand everything around them, but they cannot easily coordinate their mouth, tongue, lips, and jaw to form sounds and make words. They are nonverbal not because they do not understand language, but because their bodies struggle to execute the movements needed to speak.

Processing takes time and learning requires repetition and patience. What looks simple can be difficult, and it is hard for others to imagine how complex every task is when very little is automatic.

One of the biggest early challenges was helping Benji and Giulietta believe they could succeed at small tasks. After years of struggling, watching their peers do things they could not do, and therapies that did not work, they had learned that success was unlikely. Building trust took time. It meant showing up consistently, helping them through frustration, working on one small task at a time, and building confidence through success.

Those small successes built their confidence to show up and work hard on the next task. Over years, we built on small victories to reach a point where skills could be acquired, still modified and still with difficulty, but in ways that led to some independence. They learned that achieving goals gave them the ability to do things they wanted: communicate what they needed, get support in ways that helped them, be independent in daily activities. The skills reduced their dependence and gave them more control over their lives.

Once they realized they were capable of achieving goals, they became more motivated to face the next challenge. With every success, they became increasingly willing to show up and work hard. They knew their supports would help them and could effectively help them, so they trusted them. The partnership grew. The supports saw their work was leading to meaningful impact: people who had been disabled and dependent increasingly coming into their own, living life on their terms with dignity and pride.

Benji and Giulietta pick up on our emotions, our energy, our belief in them, our impatience, and our irritability. That meant we had to stay grounded, manage our frustration and fear, and believe in what was possible even when progress was hard to see. That is not easy when you are exhausted and do not know if things will get better.

What made the difference is the people who stayed and the skills they brought. The support workers who became family are talented at teaching and adapting in the moment. They can read subtle cues and adjust their approach instantly. They learned to see the world through Benji and Giulietta's perspective, to understand what was hard and why, and to meet them where they were.

Progress has been slow and hard-won, requiring years of showing up, adjusting, learning, and trying again.

What you see now is a life built by people who persisted, who identified and addressed every barrier to success, and who believed that Benji and Giulietta were capable of living meaningful lives with dignity and purpose. They were right. That belief, shared across family and professional caregivers who became family, drives ongoing efforts to support Benji and Giulietta throughout their lives in setting goals and living the life they want to live.