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changemakersaathi Story

MY JOURNEY WITH AUTISM

TRIVENI GOSWAMI VERNAL
Autism Advocate and Special Educator

My journey with Autism began in 2014 when my son, Kabir, was diagnosed with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), at 2 and a half years. He had shown signs of regression in speech and social skills. All the words he had, slowly disappeared, and he was reduced to a state of babbling.

I have a background in Clinical Psychology and I think that helped me initially, especially in looking for resources, and being able to create an understanding of how the brain was wired differently in Autism. But Regressive Autism was something that completely baffled me. I pored over pages and pages on speech and language acquisition, speech therapy interventions but couldn’t come up with anything concrete on how children who lose speech through regression, acquire it again, or how long it takes (if ever).

What followed were many sleepless nights, that kept me awake…trying to understand how we had come to this point, how did we miss the red flags—disappearing words, losing eye contact, not responding to his name etc. But more importantly, what would the next course of action be. I reached out to a lot of people—friends, extended family members, individuals I had worked with and somehow, the process to find ways to work with him, just snowballed from there. It was like a ripple effect. The more I spoke about it, the more I interacted and engaged with people, and the more opportunities began to open up, for working with him.

Soon after his diagnosis, I did a three month in-person Parent and Child Training Program (PCTP) at Action for Autism, New Delhi. That was literally a game-changer of sorts, and it shifted the focus within me—from being an individual who felt ‘victimized’, by the circumstances to someone who felt ‘empowered’, learning strategies and new ways of engaging with him.


Right after the training at AFA, I created a page, “The Autism Niche” (www.facebook.com/theautismniche/) to write about and disseminate information on educators, parents and therapists who have been associated with the field of Disability, and more particularly, Autism. I have, at various points in time, carried out series of interviews with Speech Language Pathologists, Montessori teachers, Dance therapists, Special Educators and last but not the least, Parents of children on the Autism Spectrum. The page has been my way of connecting with other parents and professionals, and is also an endeavour to give back to the community.


Over the years, I have tried to keep myself abreast with new ways of working with him and I have undergone several trainings for the same.


*In 2018 I completed my B.Ed. in Special Education, with a specialization in Intellectual Disabilities (under RCI).

*Then I did the Dsylexia Teacher Training Certification (with Afshan Jabeen from Ripples Centre for Enhanced Learning, Hyderabad, in 2019).

*In the post-Covid world, several courses are now available online, for us. I took that opportunity and, I did a couple of courses online with Seema Ganjoo (an Autism Interventionist from Mumbai) on Executive Functioning and Perceptual Processing and Functional Language and Communication.

*I then did a Diploma in Art Therapy (more on the lines of Art as Psychotherapy) from an organization in Bangalore, a couple of certifications in Brain Gym and a self-paced course on Gestalt Language Processing from http://www.meaningfulspeech.com .

*And a couple of months ago, I did the Avaz Certified Educator Course.

So, I think its very important for one to be open to doing and learning new ways of working with our children.

Stumbling upon Gestalt Language Processing, last year, was truly transformative in the way I began to look at communication via phrases. Nowadays, I meticulously write down every phrase Kabir utters, and I often find that he uses the meaning of that phrase in the correct context.


I have been associated with Nayi Disha (a pan India resource centre on Developmental Disabilities) for close to 7 years now, as a parent advocate/mentor and I have also begun volunteering at Abhyasana (a centre working with children on the Autism Spectrum, in Hyderabad), since 2022.


Kabir has now blossomed into a child who is inquisitive, loves reading books and listening to various genres of music, enjoys creating art and has quite a vast vocabulary, although he is primarily non-speaking. He is able to communicate, and often does so, through echolalic phrases he has picked up from books/ music he listens to or even programs he watches.


Visual Art has been a transformative tool for Kabir. He has a sensory need for sticky surfaces and that’s how I got him to try finger painting. Introducing various forms of Art opened up new doors for him—it was not only a vessel to learn multiple concepts like colours, shapes and textures but also a means by which he could express his thoughts and emotions. He truly enjoys the process of creating art and is greatly inspired by Nature.
Kabir’s explorations in art have also led to several new connections for me. I began my association with Special Saathi, after Kabir was made a Creative Associate. I will be contributing regular pieces to the blog on Special Saathi, from this month.

I have been juggling various hats, professionally, since Kabir’s diagnosis. Initially I decided to take a sabbatical from work with a non-governmental organization, that I was working with. I then started my own brand, “Nijora” (www.facebook.com/nijoracrafts/ and on Instagram @nijoracrafts). I handcraft jewellery and make small batch skincare. I also work as an Independent Researcher and I try to work on subjects that are close to my heart—Northeast India Studies, Disability Studies, Gender, Autism, Caregiver Burden and Art. I have managed to publish articles on Disability Rights, Caregiver Burden and Caregiver Mental Health and Covid (over the past six years) in a few International Journals and co-authored a chapter in a book on Ecofeminism, last year.

While I agree, multi-tasking is not easy, but I truly believe that it is absolutely essential, that we all develop identities that are much more than just being an Autism parent. We all have a lot more potential within us, and we are stronger than we believe and we can be so much more, in life. It is also very important, that all women have financial independence and that we actively work towards realizing that.

For me, the journey of being an Autism parent has been a life changing experience. There is so much of me, today, that has been moulded by Kabir’s lived experience with Autism. Having a child on the Autism Spectrum has its fair share of challenges—innumerable ups and downs, frustration, anger, being driven to despair with many a sleepless night. But it also teaches one to slow down, celebrate even the smallest of milestones and accept the individuality of the child.

One has to dismantle internal frameworks and expectations, that one may have carefully built over the years.

Life with a child on the Autism Spectrum is definitely not a bed of roses but if we allow ourselves to step back and be mindful, from time to time, Autism can open up a new world for us!
****************

Author Triveni Goswami Vernal

Triveni Goswami Vernal is an Autism advocate, registered Special Educator (CRR A64010) and an Independent Researcher. Her areas of interest include Autism, Disability Rights, Gender, Art and Northeast studies. She is a mum to an 11 year old on the Autism Spectrum.

Artwork by Triveni’s son Kabir Vernal “Garden Lion”
It’s a whimsical take on a Lion who is looking rather benevolent with a wreath of flowers around it’s face.

Creative representation for Triveni’s changemakersaathi story is done by her son Kabir Vernal.

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changemakersaathi Resources

Alice’s world videos

A compilation of 3 videos from Alice william ‘s YouTube channel Alice’s world https://youtu.be/nOhYVpTC_x8

Alice performing Gaudiya Nritya
Saraswati Vandana
Alice’s video on how does she makes handcrafted items
Alice’s video painting in a live canvas painting event in Bangalore , Nexus Shantiniketan mall

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changemakersaathi

Alice in Wonderland: Story of Alice & Sweety

Wondergirl Alice and her WonderMom Sweety in the Wonderland


Alice William was born in Kolkata in 2002. Her parents were overjoyed to welcome their first child into the world, but their happiness was short-lived when they discovered that their daughter didn’t open up her eyes for 5 days. And when she opened them, the eyes were all white, and doctors suggested for a surgery as they suspected Cataract. During the investigation process required while undergoing a surgery, Alice was diagnosed with a hole in her heart. Moreover, she had hearing and speech impairment. Her legs were twisted since birth and after number of physiotherapy sessions over the years she is able to walk properly.

Alice’s parents were devastated by the news, but they were determined to do everything they could to help their daughter. Alice remained admitted to the NICU in that hospital and underwent 21 eye surgeries to correct her eye condition. She was there of over an year in the hospital since the time of her birth. She got discharged from the hospital after an year. The life somehow started to become back on track for a couple of years. However, her vision gradually worsened due to a wrong lens placement during her surgery, and by the time Alice was six years old, she was now 90% blind as she lost her vision almost completely, which was a significant setback in her life, which meant that communicating with her was a challenge.

Alice William, has lived a life full of challenges and triumphs. Born with multiple disabilities, including cataract and a hole in her heart, hearing impairment and vision loss. Alice faced a difficult journey from the start. Her mother, Sweety William stood beside her daughter like a solid rock and was determined to give her the best possible life, despite the challenges she faced from her husband and immediate family members. Sweety was working in Real estate sector and had to leave her job as to support her daughter and look after her from working at home and taking tuitions to support herself and her daughter, as she didn’t recieve the support from her husband.

Alice’s journey began in a hospital where she spent her first year of life, undergoing multiple surgeries and treatments. Despite her struggles, Alice proved to be a fighter, and gradually overcame her health issues over the period of time but fought severe infections and health related issues every now and then.

Growing up, Alice faced many challenges. Despite her deaf-blindness, Alice was determined to lead a fulfilling life. She began her education at a deaf school in Kolkata, where she learned to communicate through sign language. Earlier, she struggled to communicate with her family and friends, moreover, she found it difficult to learn new things. However, Sweety was determined to give her daughter a good life. She enrolled Alice in various special education programs and therapy sessions to help her overcome her disabilities.

As Alice grew older, she started to show a keen interest in different skills. Sweety noticed her daughter’s love for arts and crafts, and she encouraged her to pursue her interests. Alice started making handcrafted items, which were sold on various national platforms and exhibitions. She also later on took up modeling, learnt dancing, martial arts, skating, painting, craft, photography gradually.

Alice proved to be an exceptional student, excelling in all her classes and mastering a variety of skills. Alice is now a professional model, an internationally acclaimed dancer, a martial artist, a skater, a professional painter, photographer, and a videographer.

Craftwork made by Alice william
Alice at an exhibition

Alice attended many national and international level competitions, where she won numerous awards and accolades for her talents. Her international travels and expenses are also bear by various organizations which support Alice’s financial needs.

Alice at a Dance Championship
Alice performing at an event



Alice’s entrepreneurial spirit was evident when she started her own home delivery business, which is a great success. She also received support from Government of India,  several government and non-government organizations, which helped her to achieve her goals.

Alice’s talent and hard work did not go unnoticed. Alice have won many local, regional, state level awards and recognition. Gradually, Alice’s hard work and determination paid off when she has started winning many national and international accolades. Alice was crowned the National Dance Champion in 2020 and 2021. She also won the International Dance Championship in 2022. Alice received scholarships in dance and fine arts from the government of India, which helped her to achieve her dream of becoming a master in fine arts.

Alice performing martial arts

During this journey there were many proud moments so far for Sweety, Alice’s mother but the proudest of all was when Sweety got her surgery done by Alice’s earnings.

Alice’s some of the achievements



Despite the challenges Alice faced, Alice and Sweety’s life story is one of inspiration and determination. They have shown that with hard work, perseverance, and a positive attitude, anyone can achieve their dreams, no matter what obstacles they face. Alice and Sweety’s success is a testament to their strength and resilience, and their story is an inspiration to people all over the world.

Rising up again and again against all odds; despite of her multiple disabilities, Alice is able to complete her studies and is living her dreams and passion. She is now a Master in Fine Arts and runs her home delivery business. She is a celebrated artist and perform internationally. Her mother, Sweety, is proud of her daughter’s achievements and never gave up on her dreams. Their story is an inspiration to many people who face challenges in life, as they prove that with determination, hard work, and support, anyone can achieve their dreams.

These two women have demonstrated time and again that nothing can defeat a woman’s willpower when she sets her mind to achieve something.

Sweety William and Alice William have faced numerous challenges in their lives, but they have never given up. Their grit is as hard as iron, and they have shown the world that anything is possible if you have the determination and courage to pursue it.

Sweety and Alice William have shown the world that nothing can come in the way of a woman’s determination and willpower. They have inspired countless women to pursue their dreams and not give up, no matter how difficult the path may be.

On this Women’s Day, Specialsaathi salutes the resilience and determination of Sweety and Alice William. They are truly an inspiration to all women around the world.
Let us all join hands in celebrating these incredible women.

Alice got featured in various newspapers and magazines

Creative representation for this changemakersaathi story of Alice and Sweety William is done by Alice herself.

Alice’s YouTube channel is Alice’s world https://youtu.be/nOhYVpTC_x8

Listen to the audio version of Alice and Sweety’s life story in Sweety’s voice below, by clicking on the play button.

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changemakersaathi

Each day is a new dawn

Changemakersaathi: Young leaders

A sketch of Simmi Vasu by our supertalented CreativeSaathi associate Morpheus Nag

My name is Simmi Vasu, mother of a son, named Kartik with , and a 22-year-old daughter Mythili. My journey in this area began with my son, when in the early days, he started to missing so many of the developmental milestones. Like most other mothers, I thought it was just a case of ‘ordinary’ late development and maybe Kartik was a late bloomer like so many other kids. Until, one day, my aunt (who was the first to do so) pointed out that his was not a normal case, missing so many of his development milestones.


Once I realized and agreed, it started a whirlwind of activities to diagnose and manage his condition. Speech therapy, occupational therapy, special education, like every other worried parent running from pillar to post to find solutions. Getting lost in the vast information (and emotional) load of advice coming our way.

Kartik first went to a play school, followed by admission into inclusive school. The journey to get him admitted in school was not easy at all. It’s a struggle, I see parents facing every day, especially as I am a special educator myself now. The vast majority of schools don’t want to take autistic kids, or prefer, as they say, ‘near-to-normal’ children. Other parents also shy away from our children, if the disability is visible.


Once in class 3, the so-called inclusive school refused to keep Kartik on their rolls, saying that he is not able to cope up. I was totally lost and remember crying in front of the school’s coordinator, asking her where would I take my child if an inclusive school, itself refused to help him.


So, first I trained as a special educator, figuring that since autism is not well-known, let alone treated, I had to take a stand by myself. Truth is, those who know of autism, usually do so because someone in their family is affected. Meanwhile, Kartik joined a special school called “Orane Kids” in Noida.


It’s here, I can proudly say that with the help of his teachers, he became independent in many essential life skills. In fact, in a recent assessment his progress was verified by an occupational therapist.


I started to learn everything and anything I could about autism by doing my B. Ed in Special Education. Started my field experience setting up the Early Intervention Centre for the clinic, Hearing Point, in Noida, back in 2014.
Having gained that little initial confidence, it spurred me to keep going on.


Currently, I have worked in the areas of:
• Special Education: language, play and cognitive development therapies
• Special needs workshops and webinars with parents and other professionals
• Blogging and information dissemination
• And I am the Principal of Orane Kids Special School as of now.
My advice to those who face a similar situation is never lose heart.
• Never lose hope, yes! There would be good days, bad days and worst days, but as parents we are the only hope for our child.
• It’s never too late, don’t blame yourself for things that happened to your child. Autism is a neurobiological disorder it’s just that the symptoms manifest late. So just start when you come to know about it and keep going.
• Wait & watch is the worst approach you can do to your child, just because the child’s uncle, dad spoke late doesn’t mean the child will also speak late. The sooner you accept autism easier is the journey ahead.
• Most important take care of yourself, engage in a hobby, think of your young days what all you wanted to do. Do it now!

I am a long-distance runner, a fridge magnet souvenir enthusiast, stamp collection related to Indian Mythology, I have a collection of key chains. I am passionate about collecting old books especially fond of every copy of Agatha Christie’s mystery novels. Whenever I feel I pen my thoughts in a diary and that’s a big de- stressor.
Be always like a wide-eyed child curious to learn. (And yes, I also have 24 hours)
• All these makes the journey of Autism never a cake walk, but gives you the energy to bounce back the next day.


Signing off with one of my poems…

Each Day is a new dawn
Each day a promise.
Sometimes the day shatters
Like a broken mirror,
The shards embedding, leaving me with scars
and bleeding.
Still the next day I find a light reflecting from those thousand pieces,
breaking into a riot of colours.
Each day is a new dawn
Each day a promise.

Author Simmi Vasu

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changemakersaathi

Reflections

Changemakersaathi- March : Viji Rajmohan

Reflections

It has been an incredible journey. Parenting an autistic is a mixed bag with its highs and lows. Never a dull moment. Some memories shall remain etched in my mind forever. We were in the United States at the time of Ramam’s diagnosis. On my request, a parent, who is also a pediatrician, observed him in a playgroup. She called me and asked, “Have you heard about Autism?” Therein, began our journey. He was later officially diagnosed at UCSF. As he sat buckled in his car seat, on our drive back home, the evening sun’s rays hitting 18-month-old Ramam’s face gently. Both of us, husband and wife, immersed in our thoughts of “What next?” We, now realise this question shall continue to raise its head with regular periodicity. – Change being the only constant in this journey.

When we got back to India; we were pulled in different directions. All good intentioned advice. But, in the end; two involved parents deciding for their child appeared to be a more rational approach. As parents; you know your child the best.

Most of us here are on a similar journey, trying to find the right resources, professionals, caregivers and the training required for our children. Building a community around our child enables them to lead a life with dignity and self-respect. This is a huge responsibility on the parents. As a parent, this is probably what we call “worry” and trying to do the right things by our child. – A responsibility to ensure they have a smooth transition for a life after us is as important as just getting them skill-trained.           

Micro goals, achieved consistently, lead to macro results. Parents’ clarity of thought can lead to clear paths and consolidated actions that can improve a child’s life. – Nothing in this journey can beat consistency and persistence.

We’ve met wonderful strangers who have gone above and beyond to assist us. At some point, I felt It is important to give back to the community and it was with this in mind I started my blog, https://care4autism.blogspot.com/ What began as a service to the community has been a huge learning experience that has made me wiser. I am humbled by all the stories and perspectives I listen to. Through my interview, it’s been my fortune to meet people who share the same passion. – Autistic families can teach us so much more about life; grit, sacrifice, patience, and unflinching faith and hope in their children.  

Where does my son himself fit into this journey? Everything revolves around him. He is at the epicentre of everything happening in our lives, be it a change of residence, a job, relationships. Knowing much more than he lets you know, he puts in more than his share, trying to fit in, doing his best with his constraints. 
In the course of this journey, I have realised a few things. You are aligned with your priorities when times are tough. All the fluff falls on the wayside. It gives you deep focus. The journey has taught us to embrace differences more easily. Our son has definitely made me a better human being. We are truly blessed by his love. 

Long back, I remember writing about Ramam for a magazine, “My Little Teacher.” That little teacher is a 22 yr old young man now.  With time, the trust and bond we share with our children only grow stronger.  

“Having a child who is struggling doesn’t make you a bad parent, just as being a child who is struggling doesn’t make your child a bad kid.’-Ann Douglas                            

Author Viji Rajamohan

A parent and a blogger. Love travelling and reading.
Educational background: B.pharm, MBA ( Marketing)

Creative representation for the ChangemakerSaathi story “Reflections ” has been done by our CreativeSaathi associate Ansh Batra.