How We Built What Didn't Exist
Every now and then something happens that reminds us why we do all of this. Recently, we had the opportunity to join a Speech-Language Pathology class over Zoom. The professor, who had already assigned her students to explore our website and watch our videos beforehand, invited us to come in, answer their questions, and just talk about Ben's journey, Benny's Hub, the NARBE Foundation, and how we got here.
The students had each submitted questions ahead of time. Thoughtful ones. The kind that reminded us that the future of this field is in really good hands.
For those who are new here, here is a little background. Ben is Ari's brother, and he lives with us. He has H-ABC, which stands for hypomyelination with atrophy of the basal ganglia and cerebellum, a form of TUBB4A-related leukodystrophy. It is an ultra-rare, progressive neurological condition that took away his ability to walk, talk, and independently do the things he loved, like gaming, watching his shows, and connecting with the people in his life. For close to a decade, Ben was limited to yes and no. No real way to start a conversation, tell us what he was thinking, or reach out to someone on his own.
That started to change when Ari built him a fully custom computer system using AI. Ben now navigates everything using two head-activated switches, one on each side of his wheelchair headrest or on a DIY made headband. He can play games, stream his shows, text his best friend, and type full sentences on his own keyboard. He has had his voice back for just over a year now, and every day he surprises us.
We spent about an hour and a half on Zoom with this incredible group of future speech-language pathologists. What you're reading is a condensed and cleaned up version of that conversation, but it captures the heart of everything we shared.
Highlight: SLP Class | Q&A
And we let Ben introduce us himself.
Ben: Hello, my name is Ben. It's nice to meet you all. This is my sister-in-law Nancy, and this is my brother Ari. Today we are going to talk about my custom computer software and my journey back to communicating. I have some pre-written responses, but to make things easier I can answer yes or no questions as they come up.
From there, we dove into the students' questions. Here is how it all went.
Q: In your own words, what are Benny's Games and NARBE House, and what inspired you to create them?
Nancy: NARBE House stands for Nancy, Ari, and Ben. That was Ari's idea, and this is our house, this is our family, and we share our story across social media under that name.
Ari: Benny's Hub, or Benny's Games, came from a real gap we kept running into. There just were not a lot of games Ben could play independently. A lot of what existed was adapted from mainstream games, and those adaptations were not enough for Ben. He wants to do things on his own. So we built a hub where he can pull up an entire arcade and play whatever he wants, whenever he wants, without needing us to set anything up. On top of the games, he has a messenger, a phrase board, a keyboard, and more. But our main focus was always recreation first. Getting Ben access to every streaming platform independently was huge for him. And we made the whole thing free and available online because we know how big the gap is for switch-accessible gaming.
Nancy: Ben, would you say your favorite part about having everything on your computer is the games and being able to watch your own shows?
Ben: Yes.
Nancy: And what is your favorite game?
Ben: My favorite game is my dice game, Farkle.
Nancy: He is a gambler at heart.
Ari: The other day, we have played Farkle in the car with just a phone and a Bluetooth speaker, Ben directing the whole game with his head turns. That is the kind of moment that makes everything worth it.
Q: When designing games for AAC users, what principles matter most to you? How do you approach making them both accessible and genuinely fun?
Ari: Everything we built started with Ben specifically. His abilities, his vision needs, his sense of humor about what is and is not a good game. We share it all freely so others can use and adapt it, but it came from him.
The accessibility features we added for Ben, things like text-to-speech, scan speed, adjustable icon sizes, highlight colors, we made all of those customizable so other people can adjust them for their own needs. But making things fun? That is really just constant iteration and getting Ben's honest feedback. We will spend hours building something, Ben will try it, and sometimes the verdict is basically: this is terrible. So we go back and fix it.
Baseball is a great example. One of the first games we built, Ben loved it, then kind of stopped playing. I asked him, would it be cool if you could actually swing the bat?
Ari: Ben, when we finally got the batting feature working, was that really cool?
Ben: Yes.
Ari: Once we added that he was back on it constantly. It grew into full seasons, customizable opponent colors, more options all around. From there we built the game out even further because Ben kept wanting more. That is really the whole process. Iterate, get feedback, keep going.
Q: How do you see the games supporting people who are learning or building their switch access and scanning skills?
Ari: We can only speak from our experience with Ben, but gamifying everything made scan and select access genuinely exciting for him. And that confidence spilled right over into communication in ways we did not fully expect.
Once he was playing baseball regularly, he wanted to tell us his scores. He wanted to brag. And that required him to go to his keyboard and type things out. He started saying things we had never heard from him before.
Nancy: There was one moment early on that we still talk about. We asked Ben if he loved life, expecting him to just select yes on his phrase board. Instead he typed: I do. Two words. But the fact that he chose "I do" instead of "yes" completely surprised us. We knew something had shifted in a big way.
Nancy: Ben, is it pretty cool that you get to say all these new things now?
Ben: Yes.
Nancy: Do you love having this system?
Ben: Yes.
Q: For someone getting started with Benny's Games, what are the most important settings and features to adjust first?
Ari: Auto-scan is the big one right out of the gate. You need to decide whether someone is a single-switch or two-switch user because that changes how everything works. From there, the visual settings matter a lot: cell sizes, colors, highlight colors. And picking the right text-to-speech voice. On Mac there are a ton of options. On Windows it depends on the language packs installed on the device.
But the bigger thing we always want people to walk away with is this: the hub is just an example. We see around 30 people a day using Ben's Hub, which is still wild to us. What we really want people to hear is that you can build something like this yourself. You do not need a developer. We are not developers. We just had an idea, started talking to AI, and kept going.
Q: What influenced the design of the keyboard and phrase board? Walk us through your thinking around motor planning and body movements.
Ari: Ben uses two head-activated switches, left to scan forward and right to select. We built auto-scan into everything so it can also run on a single switch if needed. Ben has low vision, so text-to-speech is essential for navigation. And we always have to think about the progressive nature of his condition. Things like thumb presses have gotten weaker over time, so the head switches have been the most reliable option.
When we first started, a developer through the Speak Your Mind Foundation built us a simple grid prototype. Easy to see, easy to edit, and Ben got comfortable with it quickly. A lot of what we build now is still grid-based, either row-to-cell scanning or straight cell scanning.
The keyboard is alphabetical instead of QWERTY because that is what Ben knows. Switching it now would create more frustration than it is worth. We hear that suggestion a lot but it comes down to what works for Ben, not what is theoretically more efficient.
We also built the predictive text around movie scripts because Ben is a huge movie person. It uses a database of scripts with three-word groupings, weighted by how frequently and recently he has used certain phrases. The more he types, the better it gets.
Nancy: Ben, the software you have used in the past, did you like using them?
Ben: No.
Q: How is AI already part of NARBE House, and where do you see it going for AAC users in the future?
Ari: AI is how we build all the games we share through the NARBE Foundation. It helps us brainstorm content ideas, figure out video concepts, plan things out. It literally helped us navigate starting a nonprofit because we had zero experience with that. We just started asking questions and it walked us through every step.
Nancy: People hear what we have built and assume we have some kind of team. It is just the three of us, with AI. And it has made everything possible. We have accomplished more in the last year than we ever thought we could.
Ari: We know AI is a complicated topic and there are real concerns worth taking seriously. But as a use case, using it to build accessible, personalized tools for someone who had been falling through the cracks for years, we think that is a genuinely powerful example of what it can do. Especially for clinicians who run into one-off situations where nothing off the shelf fits.
Q: What roles have SLPs, OTs, and families played in your work? What do you wish more clinicians understood about AAC users who are building their own solutions outside of traditional therapy?
Ari: After pediatrics, a lot of support just falls away, especially for someone with complex and progressive needs like Ben. The advocacy, the communication support, the momentum, it all gets harder to sustain without the right people still in the picture. We needed more of that, and we know a lot of families are in the same place.
We try to show what is possible as a family and hope more clinicians can use our story as a starting point for thinking differently, especially when there is a lot of device abandonment. Ben had AAC devices before this. They sat unused. He did not want them. And now he is on his system constantly. That change did not happen because we found a better product. It happened because the system was built around him.
Nancy: We always say, we are not SLPs, we are not assistive technology experts, we are not developers. We just build stuff with Ben, for Ben, and we share it. But we are proof that when you combine AI with someone who really knows their person, you can create something that no off-the-shelf option could replicate.
Q: What barriers have you seen AAC users and families run into when trying to access recreation technology?
Ari: Recreation is not really emphasized, and we understand why, especially with younger kids. There is a real concern that games are a distraction from communication goals. But for Ben it worked the exact opposite way. The game was the gateway. To get him to communicate, you needed the game first.
Adapting existing mainstream games is also just kind of a half measure. A standard controller has 13 or 14 inputs. For someone like Ben who works one input at a time, that creates a cascade of problems. What we kept asking ourselves was: what if you built games from scratch with single-switch access in mind? And those games basically did not exist before. Now, because of AI, they can exist. We built them. Other people can build them too.
There is also a cost barrier with a lot of existing tools, and some of them just do not have the features people actually need built into them. That is a big part of why we made everything free.
Q: What has been the hardest part of this work, and what keeps you going?
Ari: Keeping Ben's custom software updated has honestly been the biggest challenge. We are constantly iterating, so I might make a dozen little changes, a timing adjustment here, tweaking how he gets in and out of a show there, and getting all of that moved cleanly to GitHub without breaking anything takes real effort.
Nancy: What keeps us going is Ben. His smile, his joy, watching him do things we genuinely never thought were possible.
Ari: And the reach. Our story has connected with millions of people, which we still cannot fully wrap our heads around.
Nancy: We hear from families who did not even know AAC was an option, who did not know where to start. We always tell them, we are just caregivers, go find an SLP or a healthcare professional. But being able to open that door for people means everything to us.
Nancy: Ben, do you feel good about sharing your story and knowing other people feel inspired by it?
Ben: Yes.
Q: What future games, tools, or technology are you most excited to build through the NARBE Foundation?
Ari: More games, always. We have grown from 4 to 13, and a lot of them now have built-in editors so anyone, SLPs, OTs, families, can build their own custom trivia games, golf courses, matching games, word jumbles. You do not need any technical background. We built the editors so the content creation part is accessible to everyone.
We are also working toward multiplayer over the internet. Right now games like Farkle and golf support local multiplayer, but we want people to be able to play with Ben remotely someday. Through the NARBE Foundation we are also building out more switch kits to donate to families who need them, because the hardware matters just as much as the software.
And honestly, our big dream is that families, caregivers, SLPs, and OTs start building their own custom games and sharing them on the hub so other people can play them. We have not really seen that done before. We want to open that door.
A student also asked: When you are developing games, do you ever worry about hitting a ceiling where complexity starts hurting accessibility?
Ari: Our ideas definitely hit that ceiling sometimes. We talked about building a King's Quest-style adventure game for Ben, something story-based with a lot of elements and items. And the problem is two-fold. First, building something like that takes a ton of time, and we do not want to spend weeks on something Ben is not going to enjoy. Second, Ben genuinely prefers instant gratification. The gambling games, the sports games, things where something happens fast. Longer story-based games would probably bore him.
We also had an idea around building something like a top-down Zelda-style game using the same movement mechanic as his golf game. We thought it could be cool. Ben was not super interested. So it stays on the back burner for now, because we only really want to build things Ben is actually going to use. That said, we do think there is real value in that kind of game for other users, so it is not off the table completely.
The two-button setup is both the constraint and the creative challenge. Everything has to work within that, and when it does, it is really powerful. When it does not, you end up with something that is technically impressive and not very fun, and Ben will let you know.
We wrapped up by showing the class Ben's keyboard live on Zoom. He navigated to it independently, scanned through the rows, and spelled out his answer to the question: what is your favorite show to stream?
Ben: The Simpsons.
Ari: His comfort show. His nighttime staple. Ben is a loyal fan.
The class got to see exactly what switch scanning looks like in real time, how the text-to-speech reads each row aloud, how Ben holds down his button to back out of a row when he overshoots, how the predictive text pops up after just a few letters. It is slow sometimes. It takes focus. But it is his, and he does it himself.
And then, at the end of the session, Ben navigated back to his phrase board to close it out.
Ben: Thank you for having us speak with you today.
We left that Zoom call feeling accomplished. These students asked great questions. They listened. They cared. And we got to be there with Ben, as a family, telling our story together.
If you are a clinician, a student, a caregiver, or just someone who found their way here, welcome. You can explore everything Ben uses for free at narbehouse.com.
If you want to learn more about our switch kit donation program or the NARBE Foundation's resources, head to narbefoundation.org.