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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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Happy International women’s day

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Story

Happy New Year 2023 by Rodrigues family

The ChangemakerSaathi for this week Janice and Bryne Rodrigues have sent their best wishes to all the parents connected with specialsaathi through this video.

Happy New Year 2023 by Rodrigues family

Thank you Rodrigues family – Joanne and Brydan; Janice and Bryne.

Specialsaathi wishes you all success, happiness, health and peace. May you find everything your heart desires. Wishing you and your loved ones a very Happy New year 2023! Here’s to another year full of joy, laughter, and unforgettable memories!!


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specialsaathi Story

Muskaan the Drama queen

A blog on Muskaan’s first drama performance in school on annual day.

मन – day की बात SpecialSaathi के साथ

Dear Shilpi ma’am,

It’s a pleasure to be a part of SpecialSaathi group. This kind of platform is giving immense opportunity to our kids to showcase their talent whether it’s dance, art or drama or writing a blog.

Muskaan is a happy and a cheerful girl. Very caring, emotional but a little introvert by nature. She is 16 years now. She is very intelligent and observant. She is strong but little stubborn too. Can face any problem with a smile. That’s her biggest strength.

She speaks through her eyes and always has smile on her face as her name suggests… 😊. She was born with delayed milestones, so in the initial years of growing up she was diagnosed as a hyper active child and speech was very less in one word conversation or two or three phrases. But with various Speech & OT therapies she started improving. But later we got to know that she has “Selective Mutism “. And she would interact or socialise only in her comfort zone etc.
But as time grew she started learning with various techniques of social stories, play dates and exposure to new & known places.
Convincing her to take part in various activities was a challenge though but I kept on encouraging her to take part in dance show, sports events for three years and she won medals, & trophy 🏆 as well. Which motivated her to keep learning and performing.

With online classes and during pandemic as she didn’t have a choice she started speaking through a “Mike” first & then after a month or so she started to converse with her teachers and peer group verbally. This is how a Selective Mutism child can speak with her own will & confidence, that’s what I understood that day.



So every year participation in school annual day was also delightful to see her performing in dance etc. But this time it was Middle school participation in Dec’22.

So I am happy and proud to share that as Muskaan first time took part in drama performance at her school Annual day function. The drama named ” Safarnama” where she played a role of a guard to a king who was very possessive for his silver treasure. And the part which everyone ( her teachers & spectators) appreciated was that the dialogues were in bhojpuri .

The way muskaan learned them, understanding the co-ordination sequence with other kids ( main stream kids who she didn’t know) to go up & down the stage left & right on stage. Saying the dialogues as the drame performance. Imitation, synchronisation.


Patience level to cope up with anxiety to perform, as to who all will come, what will people & teachers say. How will the costume be. Apprehension towards wearing sun glasses as everything seemed to be blurred. Intelligence of putting them on nose to see the audience.



Initially I was not comfortable with the idea of her taking part in drama I thought dance is what she liked more but her teacher made me understand that this kind of exposure will be good for her.

And she was right, so many things she learned in last couple of weeks. And one of the areas which can be explored in future for her social interaction building and overcoming her fear of performing on the stage infront of the audience.

Muskaan was lucky to get this kind of role and she performed so well.

With applaud from their seniors , principal , teachers, family and friends made her very happy and excited.



Staying in a school for 10 hrs was not easy in last week at a stretch of 3 days. But I am glad she did it.

The hard work always pays and clear “Victory over fear”.


Stupendous performance. I wish she gets many such opportunities in future too.

Sharing few pics & video of her performance in this blog.

Hope you ll enjoy watching the same.

Regards Divya Surie


Author Divya Surie

I am a house wife and I run my own garments work from home. I love drawing and painting as it’s is my passion. I learned various forms of painting glass, canvas, water and oil colour etc…at the age of 40yrs. And few of my beautiful creations are now my house decoratives.😀So age is just a number.
I also help my daughter in designing of tote bags, wedding envelopes, pouches and gift tags. Basically she is now a part of “Sitaara Crafts” a platform where all kids with special needs can showcase and sell their talent. With making of beautiful and amazing products from best out of waste. We sell through Instagram too 😀.


ToteBag designed by Muskaan Surie

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BloggerSaathi Story

Turmoil of an Autism Mom Part 1


My journey with Autism By Megha Batra Jairath


There is so much I feel and want to say but expressing my thoughts had always been hard for me. But off-late, I have started writing my thoughts and I am liking it. I don’t know what energy is making me do so but I’m going with the flow. Special thanks to specialsaathi.com, which gave me a platform to express myself and write about my feelings.


Some incidents in life, force you to self-reflect, force you to become a better version of yourself, and I am in that process in life, where I am healing myself. But the path of healing is not at all easy, it has many ups and downs and a lot of hindrances. I have been hurt many times in the process and it takes time to be myself again. But every time I have come back, I am one step closer to my higher self.


My healing journey had already started before my daughter was born. I was blessed with Anaisha after almost 4 years of immense struggle and when I thought, no other problem can come into my life now, that is when she was diagnosed with Autism. Anaisha means “special” and little I knew; God will take it literally! Her diagnosis created many doubts, and I constantly questioned my prayers. With doubts still in my heart, I determined not to be defeated and take this challenge head-on.
I have been wanting to write about my understanding of Autism on this website for a long, and today on International day for persons with disabilities I am taking this opportunity. I never knew that the 3rd of December, which happens to be my birthday as well, coincides with “World Disability Day” and I would have never realized it if Anaisha had not come into my life.


I had just heard about Autism & never lived closely with any autistic person until my daughter was diagnosed with it. It was not at all easy to accept initially but we had no option. Life just changed after that & my methods to teach her changed. To teach a special child, a parent must learn new techniques which are not easy & this girl is making me teach new things every day.
There are days when I feel proud of her, but I won’t deny it, some days make me feel terrible, especially when she tries to communicate something that I am not able to understand & I pray to God to give me strength these days.


There isn’t much awareness about Autism in India and that’s the saddest part.

Autism is a neurodevelopmental disorder with difficulties in social interaction & communication. They even have restricted & repetitive behavior. Some children have issues with sensory processing. Some experience regression in their communication & social skills after reaching developmental milestones at a normal pace, & this is what happened with my daughter. She was developing at an absolute normal pace till she was 17 months & then suddenly she started showing signs of regression. (That is why it was even more difficult to accept)

Not every child on the spectrum is the same. Like you cannot compare two typical children, similarly, you cannot compare two autistic children. One keeps on hovering in the spectrum from mild to severe depending on the interventions they are getting. And that is why we call it Autism “Spectrum” Disorder.

I know that the road ahead will have many ups & downs, but with hard work & determination, Anaisha will bloom. She has already come a long way. She now speaks more than she has ever had. She has started to understand more & I promise one day she will do great things in life. I know Anaisha will find her way & will blossom
So what she is different, she was born to stand out and so the saying – “Why to fit in when you were born to stand out!”
So today, on the International Day for persons with disabilities lets pledge to love and support people with Autism and other disabilities a little more.

Read my poetry A prayer from an Autism mother to God, here….

Author- Megha Batra Jairath

Megha is a mother of a 6-year-old girl on autism spectrum disorder. Megha is a working professional in an Energy Consulting firm in New Delhi. She has a strong inclination towards dance, which is her therapy for life. In her free time, you will often see her making Instagram reels @megbats2020



Artwork by Ansh Batra

The creative representation for today’s post on International Day for persons with disabilities is done by CreativeSaathi associate supertalented Ansh Batra