Archer Calder spent his childhood unable to talk with his younger sister, Della, his only sibling.
Della has Bainbridge-Ropers syndrome, a rare genetic condition which affects her ability to eat, move and speak.
“I’ve never grown up with a neurotypical sibling, so that comparison is hard for me to make,” Archer, 17, told CNN. “But I’ll say that she’s definitely very opinionated. If things don’t quite go her way, she lets you know that.”
Della, 14, grew up using a combination of hand signals and short sounds to communicate with her family and caregivers. In her early teens, she was introduced to augmentative and alternative communications (AAC) applications, programs designed to help people who have trouble with speech or language skills. But her family was disappointed with the results.
“I really had imagined her speaking in sentences and thinking that she was going to tell me how wonderful and grateful she was for all the things we do for her. But it wasn’t like that at all,” said Caitlan Calder, Della’s and Archer’s mother.
Della refused to use the first application they tried, then broke the second device they bought her.
The cost of trying different AAC applications to see which one worked best for Della began weighing on the family. Some applications can be very expensive, with some hardware-based devices costing several thousand dollars.
Archer felt it was unfair the ability to communicate, something he believed was fundamental to being human, was causing families like his to make financial sacrifices.
“She wants to communicate like everybody else. And just imagine how hard it would be if you couldn’t communicate by talking to people,” he said.
So Archer began using his coding abilities to develop a web-based application called Freespeech. The site can be accessed from any device — phones, tablets and computers — with internet access. The simple website lets users program buttons with images of their choice to represent words. When clicked, the word is sounded out loud.
Unlike many other AAC applications, Freespeech’s buttons are easily editable, a feature Archer believed was critical to how Della wanted to communicate.
“Della’s interests come and go. We need to be able to add buttons for all the ‘Clarence’ characters and add all the ‘Addams Family’ characters and then take them off when she loses interest,” said Chad Calder, Della’s and Archer’s father, referring to Della’s favorite TV shows. “These are the things she wants to talk about.”
While there was still a learning curve for Della to start using Freespeech, it wasn’t long before the Calder family noticed a change in how Della was able to communicate with them.
“In the past, when we had to run errands, we just took her, she was never really consulted,” Chad told CNN. “[Freespeech] has really helped to bring her more into the conversation and more into the dynamic of our family.”
The family says it has also helped them discover more of her personality.
Della’s current interests include the dynamics between good kids and bullies, different kinds of school buses and having her brother draw temporary tattoos of her favorite cartoon characters on her arm. She also enjoys listening to The Beach Boys.
Free for anyone to use
Archer made his website free for anyone to use and posted it on GitHub, a code hosting platform for open-source software.
Using GitHub, Archer was able to connect with other coders who contributed their code to add different features to the project.
“For example, Della is really mischievous. She goes into the app, and she wants to delete everything and edit everything, so I realized we needed a passcode feature,” Archer said.
After posting about his needs on GitHub, a group of coders was quickly able to build a password option into Freespeech.
Archer also took to TikTok to post about his new application, hoping it might reach other families like his who might find it useful. The response was overwhelming.
“When I first made my first video, I only expected it to receive a few hundred views. And when it received a million views, I got a lot of comments congratulating me… I kind of felt this sense of imposter syndrome,” Archer said. “The good part about it was…it got a lot of eyeballs on the project and I got a lot of contributors who wanted to contribute their code.”
The story also resonated with many in the medical field who work with patients with conditions similar to Della’s.
“I am a neurologist working with people who have neurodegenerative diseases causing language problems. I think this could be useful for my patients. Great work,” one commenter wrote in response to Freespeech.
Tommie Robinson, the division chief of hearing and speech at Children’s National Hospital in Washington, DC, welcomed the idea of a new communications tool to the field of AAC applications.
“Additions to accessibility and individualization are greatly needed, and devices like an app can be an important part of enhancing the communication process,” Dr. Robinson told CNN.
For Archer, Freespeech is still a work in progress. He’s currently working on plans to make the software available to use without an internet connection, something he sees as a drawback.
He said he’s motivated to keep working on the project, not only for Della, but by the dozens of people who have since reached out to share how the app has helped their own families.
“I remember one email. It was a parent talking about a kid that they had that was around my age at the time, who was able to talk about their special interests, and their favorite video games for the first time because of the app… It meant that through my efforts, I was able to help give someone else a voice,” Archer said. “I was very proud of that.”
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