Estimated reading time: 6 minutes
Of books and dreams
“I vowed to educate her, no matter what!” said Sumathi Balaji, mother of Srinidhi Balaji, a remarkable young girl with an enduring passion for reading and writing. Srinidhi loved music, especially piano and guitar, and was excited about attending concerts. She also cherished nature and the outdoors, trips to places like Lake Tahoe and Yosemite, and dreamt of sunsets on Hawaii’s beaches. Books were her constant companions, offering her countless adventures and allowing her to dream of and travel to distant places from her couch.
Srinidhi travelled extensively through books that her mother got her, vividly imprinting details in her mind; you see, she could not have traveled to all the places her heart and mind took her. Srinidhi was battling Rett Syndrome, a rare genetic disorder that left her with a life-altering prognosis of long-term disability and dependency.
The younger of two children, she was born normal and grew to be a mischievous toddler who would swiftly grab anything within her reach. Then came concerns about delayed development. In 2005, at the age of one and a half, the family received a crushing diagnosis. “My first thought was, I’m going to lose her”, says Sumathi.
What is Rett syndrome?
Rett Syndrome is a rare genetic disorder that primarily affects girls (it is very rare among boys) as young as toddlers, and begins with the loss of hand use. “The first thing they lose is the grasping function. Some kids don’t ever walk, some do, depending on the severity of the condition, but they are mostly nonverbal, i.e., speech impaired. Children with Rett communicate well with their facial gestures because the brain is not affected; they think normally, it’s like you are locked in a body that cannot function, but your brain is intact, and you want to do everything”, says Sumathi.
Finding and giving support
As Srinidhi’s condition progressed, the family tried to learn as much about Rett as they could and find support groups within the community, eventually finding support and therapy at a clinic in Oakland run by another mom of a Rett patient. Groping in the dark, in the absence of much information, Sumathi’s “support community slowly started developing. Today, talking to other parents of children with Rett,” she says, “I tell them two things: one is to accept that your life is going to be changing from your expectations of a normal childhood and life for your child. The second thing is that this is a very rare disorder, and while dealing with this overwhelming situation, we have to be the advocates for our children.”
Learning to educate and advocate
Srinidhi was very communicative; it was non-verbal. Her eyes spoke through an adaptive eye-gaze communication device. She lost the use of her hands, but typed words by activating the keyboard with her eyes. She went out in nature on her wheelchair, soaking in the beauty and serenity. She even rode her special adaptive bike through the neighborhood.
Since Srinidhi was four, Sumathi made it her life’s mission to educate her. She began by using subcommunication cues and cards. “I wanted to bring the world to her, for her to be able to read books she wanted to and know about places without travelling. I told myself I would leave no stone unturned. I would be her advocate.” Sumathi began by teaching her phonics and reading through simple cue cards. Then came the complex communication system, which could be activated with the eyes. Alongside teaching her words, Sumathi was pursuing various organizations and insurance to get the best possible assisted living and adaptive equipment for her daughter. “I was homeschooling her while educating myself and learning to fight for her rights.”
A child with Rett’s syndrome, Sumathi says, “cannot communicate like a child with Cerebral Palsy or Autism because those children have finger pointing skills or can use a switch. With Retts, they use the eyes. They also have deficits like apraxia, so her word-processing was very slow. Learning to use the communication system was also quite a task. She would type every word through her eyes, and it would take her about five minutes to type a word using the phonics system.
Advocating at school
Navigating the labyrinth of the school system as a parent advocate and trying to secure an inclusive academic setting for her child was both a challenging and enriching experience for Sumathi. At a county classroom, Srinidhi found a wonderful teacher who helped her thrive, and eventually, in second grade, transitioned into a full inclusion setting at the Blackford Elementary School in Campbell. “After that, my only focus was to get her to do all the subjects”, says Sumathi.
At age 11, Srinidhi underwent a scoliosis surgery, a common complication for girls with Rett syndrome. The next few years saw her make steady progress at school, with an aide, a nurse, a specialized teacher, and all her medical equipment, with a specialized education plan in place and being exposed to the typical education curriculum. High school saw her through Lynbrook High, Fremont High, and finally, being homeschooled by her mother. “While homeschooling, I would often set up a classroom outdoors – she loved that”, Sumathi reflects.
By this time, mobility was completely impaired, and gross motor skills were deteriorating, but formal education continued with a dedicated retired teacher from the school.
A published author
“Since second grade, Srinidhi has always said, ‘I want to be an author or a journalist. That never changed”, Sumathi said. Using the eye-gaze device, Srinidhi started doing daily journal entries. Gradually, her language and vocabulary transitioned from a child’s to a young adult’s.
Srinidhi wanted to write for children and dreamt of being a published author. So, in May 2022, came one of her proudest moments when her book “Extraordinary Wild Adventures”, a 31-page children’s story about friends embarking on a journey, was published.
“Every word was typed using her eyes. We did not do any edits; it’s authentic writing”, says the proud mom.
End of a Journey
“We always wanted Srinidhi to get her high school diploma, because that would show how much she is capable of intellectually. With her education, she had to advocate for herself,” Sumathi said. Between herself and a trained teacher, they taught Srinidhi Science, Math, English, and Social Studies.
On the morning of April 19, 2023, Srinidhi left the world with her father, Balaji, at her side. The night before, she had been excited about a presentation on the life of Stephen Hawking. But that was not to be; “She just drifted away in her sleep”, Sumathi remembers. “It was at a time when she was thriving”.
“When I look back, I can see that her education helped her journey and became her strength.
Her quality of life mattered most, and she was proud of herself.” Srinidhi earned her honorary High School Diploma, posthumously, a few months after her passing. “She was a very successful young lady with everything that she was combating.”
Towards healing
After Shrinidhi’s passing, Sumathi has worked as an assistive technology specialist, a family resource navigator, and a community navigator at a nonprofit helping families in Alameda County get disability services. She is now training to be a disability counselor.
Resources and further reading