My son was locked in his body for 27 years-Then he found his voice
Our son Vikram turns 28 today! He was a smiling happy boy at birth — but shortly into his first year he lost eye contact, stopped interacting normally and did not develop any speech. At the age of 30 months, he was labeled a “non-verbal, Autistic and epileptic”, having upwards of 200 seizures a day. He was soon to be the mission of our lives! The ‘Autism’ verdict completely flipped our reality upside down. Twenty-seven years later, we’re wondering whether it really flipped us the right side up. Through nearly three decades of hopelessness and despair, we persisted as parents on our quest to help our son. It wasn’t until very recently that we stumbled upon a miracle that has started to unlock his seemingly unfathomably profound mind that lies within. Having discovered Spelling to Communicate in Atlanta, and Rapid Prompting Method (RPM) by Soma Mukhopadyaya, we were finally able to break through to our elusive son hidden somewhere in that body. Now, we feel as though we are discovering a deep personality that has been observing the surreal world silently this whole time with so much to say-but couldn’t! We believe it is important to share our son’s story so that our journey can impact the lives of other families who’ve struggled for years with little sign of hope… as hope is all we have!
Seizures and an uncooperative body
As far as this business of solitary confinement goes, the most important thing for survival is communication with someone, even if it’s only a wave or a wink, a tap on the wall, or to have a guy put his thumb up. It makes all the difference.
From the very beginning, Vikram was fated to a life locked in a very complex brain-body disconnect. His existence was mostly in solitary confinement, with no speech or ability to communicate. His body ravaged by constipation and pain that he could never convey, and seizures that convulsed his body with debilitating shocks. His body has no intention to listen to the commands from the brain; his existence, written off with no hope of a meaningful future.
The true impact of the label “Autistic” hit us as we set about finding ways for him to stay engaged with this world, minimizing the frustration that came with the inability to communicate. The journey has been an arduous one as our family traveled across continents, from India to the Middle East to the United States, seeking the best that the East and the West had to offer. From scientific to the occult, we tried a range of treatments: Allopathy, Homeopathy Naturopathy, Ayurveda, Surgery, and finally Siddha. Vikram spent hours on end in therapy to address the root cause of his condition. A condition that was deemed to be rare in the early 90’s (with 1 in every 10,000 people being diagnosed), is now as common as 1 in 54 individuals born today (per 2019 statistics).
Initially, some of the treatment offered relief and immense hope, but most ended up in a painful heap of lost money to help him, and worst still-TIME! His condition locked him in his prison. The neurological disconnect between his brain and body prevented his thoughts from transferring information through nerves in the body that controlled speech and movement with no voice of his own. Without ways to express his thoughts with the movement of his lips or hands, he was left to fend for himself and deal with his internal emotional struggles and physical challenges. His frustration would often manifest itself in tantrums and meltdowns that often left our hearts scarred, asking ourselves: is this all really worth it?
The best of Western Medicine seemed to fail us when, the Vagus Nerve simulator that doctors had implanted in Vicky’s body to alleviate the seizures, significantly aggravated their severity and frequency. The major breakthrough came years later in Thrissur India when we met the Siddha Ayurvedic doctor who diagnosed his problem in the gut, rather than his brain. This was contrary to what all modern science and Physicians were telling us. The Siddha medication prescribed by him coupled with this rigid vegetarian diet with no preservatives, gluten, and casein brought his seizures down to 1–2 seizures a day in a couple of months, what a major breakthrough! This preventing horrific falls that would leave scars all over his body and his mind too.
Our experiments with ABA (Applied Behavior Analysis)
Having spent years in the Global epicenter of Autism research in California, Vikram dabbled with intensive Discrete Trial Therapy (early stages of ABA) with the Bridge program centering our life for up to 10 hours a day in intensive Behavior modification that the school district part funded-It simply wasn’t for him. To add to our daily existential woes, we were totally helpless trying to find a medical solution to arrest his circa 200-plus seizures a day. The highest doses of anti-seizure medication and 2–3 days a week of hospital visits only seemed to make things worse. We left America with little to show and he had never once called out to Mom, Dad ever — to date! We left California in 2001.
After 27 years of pouring our energy into finding new treatments, we became jaded from the prospect of another experimental method believing we had tried it all as we looked at most new approaches with skepticism. With no hope for anything earth-shattering on the horizon, we learned to live with the status quo-seemingly a dead end.
Jhillika our daughter pursues research in autism
My wife and I debated whether or not to conceive again based on a “scientific theory” that siblings may be susceptible to have the same condition-we went ahead anyway on the advice of some very wise counsel, and faith. His sister’s entry into his life was transformational! Ever since she was able to, she took care of him like an elder sister, taking care of him and looking out for him, and communicating with him in their own silent language. As she grew up, she became passionate about empowering those like her brother and was on a quest for a solution.
While completing her undergraduate degree at Georgia Tech in Atlanta, she pursued the field of human-computer interaction and accessibility as she witnessed the power that the iPad had in enabling Vikram’s first interaction with technology. She pursued research with Professor Gregory Abowd, an esteemed researcher. He introduced her to a communication technique that he found to be immensely effective with his sons both on the spectrum, that had proven successful for several families in the Atlanta community. It was called: Spelling to Communicate (S2C). Jhillika attended classrooms and teaching sessions, she was amazed by how many individuals on the spectrum with little control over their bodies, were able to tap on letters to type using a letterboard. The words they typed demonstrated high levels of proficiency in language and intellect — way beyond the modest expectations of them.
Her TEDx Talk was very effective as she made the case for her pursuit of a solution for her brother’s communication using technology. Jhillika filmed videos of individuals typing and evidence of several stories of Reese (founder of ReCilff), Dylan, Ashish, and Payam. When Reese typed “THE HARDEST THING ABOUT BEING UNABLE TO COMMUNICATE IS THE PERCEPTION OTHERS HAVE THAT I AM IGNORANT. PLEASE EXCUSE MY DEVILISH BODY, MY INTELLIGENT MIND IS FREQUENTLY EMBARRASSED BY UNCONTROLLABLE OUTBURSTS” this made Bobbie and I question whether or not our son might feel the same way. Then Bobbie posted on Facebook the inspirational TedTalk by Parisa Khosrawi narrating the compelling story of her son. With all the signs pointing towards trying out this technique, the answer was to give RMP and S2C a chance. We decided to pack our bags and move to Atlanta for a few months in the hope of opening up a whole new world!
For a boy who had never uttered a word, or even shown if he knew the alphabet, we were understandably, not hugely optimistic, but thought it was worth a try. We asked ourselves: what if this might help him communicate his basic needs, at minimum tell us if he was in any kind of pain.
Vikram’s first words (spelled)
As if Bobbie had posted her manifestation into the universe, things started to click in place, among the first torch bearers we literally bumped into was Parisa. She armed us, motivated us and encouraged us on our path to our goals…egging us on and periodically injecting confidence and inspiration whenever hope started to fade.
We quickly jumped into a routine with Jessica Sibley and the team at Minds in Motion in Atlanta. What had started as a routine set of reading exercises asking Vik to spell on the spelling board, he started to show signs of having a sharp intellect. The day he did a lesson on Ernest Shackleton, and the Expedition to the Antarctic, it dawned on us, the boy has intelligence and he certainly knew his spelling, with impeccable English sentences forming in a few days since he started to communicate with jabs and pokes at the seemingly low tech spelling board. Was this really happening?
Jess was soon getting Vik to communicate through her lesson plans exploring various subjects, and the striking part was she treated Vikram as a regular fully grown-up individual who knew and just needed to learn how to communicate-A huge leap of faith compared to his past experiments that treated Vikram as a cognitively challenged person who needed to be trained in doing stuff through repetitive practice. Little did they know or even imagine, he had a fully capable and fully functioning cognitive brain behind a body façade that looked diffident and incapable. Surely the Autism and the lack of body control existed, but one thing because clear, Vikram was a cognitively smart person with potential we had yet to uncover. This was just the beginning.
In his words… “THANK YOU FOR ACCEPTING ME AND CONTINUING TO WORK HARD TO HELP ME EMERGE AS A NORMAL HUMAN”!
Rapid Prompting Method
We contacted Soma for a slot to experience the power of RPM from the Mecca of Rapid prompting Method and we grabbed the opportunity to see Soma. The 3 days with Soma as Vikram describe it was “LIFE TRANSFORMING”. She brought out his knowledge of rhyme in poetry, storytelling ability, and even got him to write. The trick was to assume total competence…she was pure Magic.
Once we knew his transformation was for real, we flung ourselves into a routine to polish the rough edges on returning to Atlanta; maximum time to be given to Vikram, with a mix of RPM and PT with the affable and very competent Mieshio and we then hit gold-Roxy!
We had now got a taste of success and dived in headlong!
“Education is that component which brings in a meaningful relationship between the happenings around us and how our senses experience them.”
― Tito Rajarshi Mukhopadhyay, How Can I Talk If My Lips Don’t Move: Inside My Autistic Mind (Soma’s Son)
Roxy started to communicate and appeal to Vikram’s philosophical sense and a very productive bond developed very quickly as Vikram did about 5 sessions of RPM a week, with mom chipping in to get a hang of the practice. Vikram still had meltdowns and Roxy started to make him aware of his body issues and lack of control narrating the story of Hercules which seemed to resonate well. We realized he understood his challenges when he wrote “I AM SO LOST IN MY MIND OF HABITS, IT’S LONELY, SO SAD TO LIVE LIKE NO ONE ELSE IN MY FAMILY”, this was a couple of months into the therapy with Roxy Cuadra.
Come October, our daughter Jhillika presented a keynote at the Grace Hopper Celebration at Orlando, and Vikram was featured as the inspiration behind her Startup Mentra.me…soon Vikram was a recognizable face across the 15,000 people that attended this ‘Women in tech’ conference. Somehow this seemed to awaken the latent spark in Vikram. He returned to Atlanta with a renewed spirit and energy-to make his voice heard.
Vik had a lot of body control issues and meltdowns; it had not been easy with the change in place routine and in unfamiliar surroundings. He slowly managed to get better body control as Roxy used reasoning and Hercules's story to drive better control of his behavior. We asked him how he had managed… “A LOT OF INNER STRENGTH, HARD WORK IS PAYING OFF, AND INNER DIALOGUE ACTS AS A COACH STOPPING MY IMPULSES”. That was music to our tired ears.
Atlanta concluded with EV (Elizabeth Vosseller) from Virginia (Growing kids therapy) and we set the boat sailing into the world of Spellers, and we were soon flying back to Dubai on the next cross-Atlantic adventure on our own.
Deeper insights into Vikram’s mind
The last few weeks before we left Atlanta, was a floodgate bursting open for Vikram’s communication with Roxy opening up about his insecurities and challenges of leaving behind the program which was shaping so well. Stress caused by not knowing if the program would take off on returning to Dubai.
Apart from the communication being a major breakthrough it also brought a tremendous wave of self-belief. “I NOTE IN MY HEART, HOW SOME NOT ONLY THINK A LITTLE DIFFERENT. IN MY OBSERVATIONS I FOUND MORE RESPECT SINCE GAINING SELF CONTROL-BELIEF IN MYSELF IS CRUCIAL”-This was simply tremendous as his esteem started to build and his self-belief taking a fillip.
We were in tears every few days as he opened his heart to us, “FAMILY MEANS TO LOVE SO MUCH WITHOUT CONDITIONS OR DESIRES” paraphrasing Hercules passion for his family. We won our initial battle, only to be spurred on to get more out of him. By his words “OH MOM, NEVER STOP PUSHING ME OR LOVING ME IN THE MANNER THAT YOU DO, I LOVE YOU!
It’s 2 months since we returned from Atlanta and started to work with Vikram single every day. The plan is to get him to start to communicate on an iPad and get the Text to Speech to allow a fairly normal exchange of thoughts and ideas and also get his needs taken care of through meaningful communication.
He has shown keen interest in Science and as we try and catch up with his voracious appetite for more interesting content, we realize that his level is also increasing quickly outstripping us of our base-level knowledge on areas such as Quantum Physics, Matter and Anti-Matter. Vikram after watching a video on the top scientific community discussing the Quantum entanglement conundrum on a panel discussion we asked, what have you been watching? QUANTUM ENTANGLEMENT. Briefly summarize what you understand of it: TWO OPPOSITE PARTICLES BEING CONNECTED IN A QUANTUM FIELD ACROSS SPATIAL DISTANCES. We were blown with his ability to explaining complicated concepts with brevity and perfect grammar-for a guy who’s never been for formal schooling-Pretty impressive!
His speed and confidence in typing has shown steady improvement as we hope to move to the next step…the Tablet device soon.
Hopefully, that will allow him to initiate conversations, and also have it read back-text-to-speech so others can start to connect and communicate more easily and is not limited to his communication partners.
Today we see hope and a future that we had never imagined even remotely possible for a him-A miracle has unfolded in the last 7 months. We feel so grateful and blessed, and as we see his struggle and show signs of confidence that is peeping through his unsure body, our hearts fill with hope, pride, and love that is pure and unconditional, just yearning for him to be “normal”.
Vikram’s life, once locked in a very complex brain-body disconnect, started to unshackle himself from his life in solitary confinement. Maybe it was to eventually help his family realize that he was leading us all through a journey of discovery and unfoldment. He was eventually to take giant strides towards his awakening, one of a rare old soul opening the doors to Karmic self-discovery. His journey is one that begs questions that wind down routes that we humans find confounding and bewilderingly curious, as we discover our limited “gross” and the ultimate in our larger “subtle” existences through time.
Our journey has been a hard one challenging every fiber of our emotional, physical, and intellectual being. Spirituality and the best of positive thinking has kept us sane and afloat. We see light, that he is and will be capable of leading a life outside of his bodily challenges that very much exist today, but he has said he needs to fight it and win. All he needs is to live in a world that’s more accepting and gives him the respect he needs and deserves as a human, in the mainstream of society, not on the fringes of human existence.
As we left for Dubai we asked Vicky what would make him happy, we expected a flood of demands- “I LOOK FOR MINISCULE MOMENTS OF CANDID LAUGHTER AND ENORMOUS JOY”
The journey has just begun, ““But I have promises to keep, and miles to go before I sleep” -Robert Frost