Written By: Saanvi Shah, FCSN Voices Youth Reporter
Graphics By: Alice Sun, FCSN Voices Graphic Artist

When Janice Chang was born, her parents immediately sensed their life had changed. They felt as if Janice’s journey would be unique. 

During her first check-up, the pediatrician noticed she could not lift her arms or legs like other newborns. Ultimately, the doctor acknowledged what her parents were already beginning to see, that Janice wasn’t developing like most babies. She was unusually quiet and still, while other infants kicked, bounced, and wailed. She lacked the strength to sit upright in her buggy and would slowly slide down because her muscles could not support her. She didn’t have the energy to bounce on an adult’s lap, and she rarely cried.

At just four months old, Janice’s mother, following a referral from the doctor, reached out for help from SARC. By five to six months, Janice was enrolled in an early intervention program. With time, she slowly built strength through simple exercises such as stretching up her hands above her, or learning to crawl uphill. Almost 2 years behind, Janice spent all her toddler years crawling and didn’t stand up until 3 years old.

With these developmental delays, Janice’s parents sought out as much information and support as they could, consulting doctors, doing research, and looking for programs that might help them understand their daughter’s behavior. However, at the time, awareness of the special needs community was limited, and there were few organizations available to guide them. 

“The autism spectrum is so big, and at the time I could have gotten more support and more help… but there were no resources,” her mother, Roxana, shared. “I felt guilty.” After years of searching for an answer or direct diagnosis for Janice, her parents decided that it was best to stop. 

“We stopped after she turned three,” Roxana recalls. “It was torture to see [Janice] go through so many tests. We just wanted to enjoy our time with her.”  

Janice’s physical limitations made everyday tasks, like tying her shoes, brushing her teeth, or walking up stairs, exceptionally difficult. For reasons still unknown, Janice has never cried. She is always smiling and seems perpetually happy. Her low muscle tone prevents her from fully closing her mouth, which causes constant drooling. This, combined with her physical challenges, has also affected her ability to speak. As a young child, she murmured sounds, but over time, those vocalizations faded, and she eventually became nonverbal.

When Janice began school, she was introduced to Icon communication and an Augmentative and Alternative Communication (AAC) device, which was a turning point in her life. At first, learning to use the device was slow and sometimes frustrating. It took time for Janice, and those around her, to adjust to this new form of communication. But gradually, the AAC device became her voice. Through it, she could make choices, share her needs, and express her personality in ways that had never been possible before. For Roxana, hearing Janice speak for the first time through her device was a profoundly emotional experience. It opened a new door to connection, proving that while Janice may be silent, she has so much to say.

 With her newfound voice, Janice independently figured out how to navigate the digital universe. Roxana never showed her how to use YouTube or Facebook, but Janice learned it on her own. She began curating videos, exploring channels, and even managing her own content.

Yes, Janice has her own YouTube channel.

Using just her iPad and the AAC app she has relied on for over 15 years and with Roxana’s help, Janice uploads videos, organizes playlists, and expresses herself online in a way that’s fully her own. She’s quiet in the real world, but in the digital one, she’s confident and creative. 

“She’s really high-tech,” her mother says with a smile. “She knows how to operate her iPad, explore apps, find what she wants, and no one taught her. She just figured it out.”

Through this digital fluency, Janice has created a space for herself where she can explore freely. She chooses what to watch, what to share, and how to engage, without needing anyone to guide her. In a world where expression is often measured by speech or writing, Janice reminds us that self-expression can look like a perfectly edited playlist, a short video, or even the quiet satisfaction of clicking publish.

But perhaps what stands out most is Janice’s love for travel. While many families shy away from traveling with children who have special needs, Janice’s family did the opposite. Her mother made it a point to take Janice around the world, from Japan to Taiwan, London to Barcelona. She loved airplanes, hotel rooms, and even airplane food. “Most people avoid travel because it’s difficult,” Roxana says. “But we take the challenge. I want her to experience everything.”

There were obstacles, like the time they lost their passports in Barcelona and missed an entire cruise. But instead of giving up, they reapplied for documents, flew to Paris, and eventually caught up with the ship. “Janice never gives up,” her mother says. “She just adapts and keeps going.”

Another incident was on the London Underground, as the train arrived at their stop, Janice suddenly froze since she did not want to get off. The doors opened, and time ticked by. Janice remained seated, unmoving, which caused panic to rise for Roxana. Just as it seemed the moment was lost, a train worker announced a delay for a passenger with special needs. Miraculously, the train waited five full minutes. It was enough for Janice to gather herself and step off. Relief came in a wave, though the tension lingered long after.

Raising Janice has transformed her mother’s understanding of life, patience, and what it means to truly see someone for who they are. In a fast-moving world where progress is often measured by milestones and achievements, Janice’s journey reminds us that growth comes in many forms.

“When you’ve never experienced disabilities or special needs, you don’t naturally have the patience,” her mother reflects. “In today’s world, we expect things to happen step by step. But for Janice, that kind of progress doesn’t always apply. You have to learn to slow down, to observe, and to meet her where she is. That takes humility.”

Her mother encourages others to approach individuals with special needs not with assumptions or judgments, but with empathy and curiosity. “It’s easy to judge when you don’t understand. But if you just try to be in their shoes, you’ll begin to see that their behavior has meaning, too. They are their own people.”

Looking back, her mother does not feel sadness for the customary life Janice will miss out on– college, marriage, and typical career paths. “This is her journey,” Roxana says. “And I treat it with the same respect and love as I would for any child. Other parents need to understand that even if the journey isn’t ‘normal,’ it’s still beautiful. We have to adapt and embrace it.”

Janice’s story may not fit the mold, but it is full of light and wonder. Through her love of books, technology, and travel, through her YouTube channel and quiet confidence, she continues to teach the world that everyone has something special to share. You just have to take the time to look.

Visit her Youtube channel: https://www.youtube.com/@janicechang4231/videos