Some people follow the crowd. Others create their own rhythm. When you meet Benjamin Golden, you quickly learn he isn’t interested in fitting into anyone else’s mold. As his mom Kristi says, “He definitely has his own drumbeat going.”
And in Benjamin’s case, that’s true in more ways than one—he literally plays the drums.
Benjamin is a 32 year old creative thinker who loves music, acting, sports, and history. He also happens to have Down syndrome. Through California’s Self-Determination Program, and SequoiaSD (one of the trusted programs within the AssuranceSD family), he has built a life that reflects who he is and what he cares about.
Before Self-Direction, A Revolving Door of Support
Like many families, the Goldens were grateful for the services available through their regional center. But the lack of consistency made life difficult. Kristi remembers how difficult the turnover could be.
“One year we had 37 different job coaches,” she says.
This made it nearly impossible for Benjamin to build a relationship with his staff or find stability in his life.
It also made it hard for Benjamin to succeed at work and school. During a community college videography class, the support staff changed so often that no one noticed he was struggling. Kristi explains, “He could have gotten a tutor, but because the job coaching wasn’t consistent, no one realized what was going on, and he ended up failing the class.”
The experience discouraged him from returning to college for a long time.
The Goldens knew Benjamin needed something more stable. They needed a system that allowed them to choose staff, set expectations, and build consistency.
Finding Self-Direction
Kristi had heard about self‑direction for years through the Down syndrome community. When California finally opened the program statewide, she knew it was the right fit.
“I just always heard that it would be… a great way to access and design the life‑enhancing tools that Benjamin would need to really help develop his own dreams.”
The transition took effort. Kristi is honest about that. “The whole first year is not easy (as the parent that’s gonna be doing it). There is a lot of paperwork. You have to have a good independent facilitator.”
But the payoff? Worth it.
Building A Team That Works
With self-direction, the Goldens were able to hire their own staff and pay them fairly. Kristi explains she was even able to pay staff up to $10 more per hour than previously through an agency.
This change created stability. Staff stayed longer. They learned Benjamin’s routines. They understood his goals. Kristi says, “I think I am most proud of developing a staff that is clicking and supporting Benjamin well.”
Today, Benjamin has a team that respects him and helps him grow.
A Week Designed For Independence
Now that Benjamin has a steady team, his schedule is full of things he loves. He takes pride in managing his own home and schedule.
Here’s what a week in his life looks like:
- Monday: Benjamin starts with a Zoom meeting with his team to plan the week. Later, he goes to a social skills class and makes dinner with his roommate.
- Tuesday: This is a free day for job hunting. In the evening, he goes to an acting class.
- Wednesday: He works out with a personal trainer. In the afternoon, he goes to an improv acting class called “Lights, Camera, Action”.
- Thursday: Benjamin goes to a cafe with his laptop to look for music jobs. He also goes to an art class where they visit museums. Later, he has a clogging dance class and music appreciation.
- Friday: He has another workout session. In the evening, he goes to sports practice for soccer or baseball.
- Saturday: This is a day for chores like laundry and cleaning his house. He also has dinner with his family.
- Sunday: He takes a ballet class at noon. Then, he plans his meals and goes grocery shopping for the week.
A Creative Life That Fits Benjamin
Benjamin has a wide range of interests, and self-direction has allowed him to build a life that supports every part of who he is.
Music is one of his biggest passions. He loves punk and rock music—“definitely not the Disney style pop”—and he has always been drawn to bands like Green Day, Linkin Park, and Red Hot Chili Peppers. His taste in music reflects his personality. He likes things that are bold, expressive, and a little edgy.
Benjamin does not just listen to music. He creates it. He writes song lyrics and hopes to produce albums someday. He plays drums, keyboard, trombone, and trumpet. He even performs with a British accent that he taught himself by changing Siri’s voice on his phone.
Acting is another passion. Benjamin has appeared in several Dhar Mann videos, which Kristi describes as “real life” stories that often explore fairness and kindness. These roles have given him confidence and a chance to be part of a creative community.
All of these interests help shape Benjamin’s weekly routine and give him a sense of purpose. At his core, Benjamin is a creative and independent adult who enjoys learning, performing, and trying new things.
Congregate and Integrate
One of the most meaningful parts of Benjamin’s week is the balance between time with peers who share his disability and time in the broader community.
Kristi learned a phrase that guides their planning: “People with Down syndrome have two social needs. One is they need to congregate with people like themselves, and the other is they need to integrate.”
Self-direction allows Benjamin to do both. He spends time with peers at the Down Syndrome Association and also participates in inclusive community activities like ballet, art classes, and job searching at the local cafe.
Looking Ahead
Benjamin is currently searching for a job in the music industry—maybe at a music store or helping repair instruments. He’s excited about what’s next, and so is his family.
A “good day,” Kristi says, includes “some social interaction… some downtime… maybe work on a project… and a rewarding job.”
With self‑direction, those good days are becoming more and more common.
Kristi deeply believes in the program, and encourages other families to consider self-direction, but she is honest about the work involved. “It is a lot of work, but it is very rewarding to see the payout. The payout is in the things that come from the doors that get to open.”
Benjamin’s Beat
Benjamin may not fit the typical mold. And that’s exactly what makes his story powerful. He’s creative, independent, and full of personality.
As Kristi puts it: “He really feels like he can do anything.” And with self-direction, he is building a life that proves it, one drumbeat at a time.