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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

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

The People’s Lawyer- Subhash C. Vashishth

Changemakersaathi- Young leaders

Subhash Chandra Vashishth also known as “The People’s Lawyer”, is an accomplished lawyer in India known for his relentless fight for justice and human rights.

SpecialSaathi is honored and privileged to feature Subhash Chandra Vashishth as our first ChangemakerSaathi : Young leaders. Subhash is advocating for disability rights and promoting accessibility and universal design in the built environment in India.

Subhash Chandra Vashishth is an advocate and throughout his career, he has dedicated himself to fighting for the rights of persons with disabilities and creating a more accessible world for everyone.

Subhash realized that accessibility was a major issue in India and that much needed to be done to improve it. This led him to cofound the Centre for Accessibility in Built Environment Foundation, an organization dedicated to promoting accessible design and ensuring that buildings and public spaces are accessible to all.

Throughout his career, he has worked on many landmark cases that have helped to change the way persons with disabilities are treated in India.

In addition to his legal work, Subhash is also a public speaker and a blogger on disability rights issues. He has given talks at many universities and conferences and have published articles in several leading legal forums and journals. His hope is to raise awareness about the challenges faced by persons with disabilities and inspire others to join the fight for a more inclusive world.

Subhash has a diverse educational and a professional background, with a professional degree in law and economics, industrial relations, social work, and developmental therapy (Cerebral Palsy & Other Neurologically Disabling Conditions). He also qualified University Grants Commission (National Eligibility Testing) [UGC (NET)] for Lectureship in Labour Welfare & Personnel Management.

He has also completed a GIAN course on “Universal Design and Accessibility Planning : an interdisciplinary approach to Inclusive Environments” from the Indian Institute of Technology, Roorkee, India.

Subhash was proud to serve in the Indian Air Force and is a veteran.

Subhash’s passion and expertise in accessibility, universal design, and inclusion is making a positive impact in the lives of people with disabilities and promoting a more inclusive society. Subhash reading and writing interests basically lies on disability rights, inclusive education, accessible mobility, transportation, and liveable habitats.

Subhash’s unwavering commitment to justice and his relentless fight for rights for persons with disabilities inspires many young lawyers and activists in India.
Through his tireless efforts, Subhash is making a positive impact in the lives of people with disabilities and promoting a more inclusive world.

So, If you are a parent seeking to better understand your rights and looking for ways to empower your children, we recommend visiting Subhash’s website http://www.subhashvashishth.com which offers valuable resources and information to help you make informed decisions and advocate for your child’s specific needs.

Subhash’s extensive work experience summary

  • He is a Certified Professional in Accessible Built Environments Level III Expert (CPABE Level III), the first in India to achieve this credential.
  • He is Co-Founder of Centre for Accessibility in Built Environment Foundation.
  • He is a Joint Secretary of National Association of Blind (Delhi).
  • He is also the Country Representative, India for the G3ict / Smart Cities for All, an initiative that collaborates with cities, governments, civil society & private sector in making global cities more inclusive in the context of the UN SDGs #11, the UN Habitat III New Urban Agenda and the UN CRPD.
  • He is an Accessibility, Universal Design and Diversity Inclusion Specialist, Design Thinker, Disability & Gender Justice Advocate and a Blogger with an interest in Inclusive Mobility and Transportation, Inclusive Smart Cities, Sustainability, Inclusive Water and Sanitation, Walkability, Cycling, NMT and Liveable Habitats.
  • As an advocate, Subhash litigates in the High Court of Delhi and Supreme Court of India.
  • He is the proprietor of ‘Vashishth and Associates’ – a new Delhi based legal firm that specializes in matters related to Human Rights, Disability Rights, Public Interest Litigation, Civil Suits, Family Law, Service Law, Company Law, Consumer Law, etc.
  • He conducts capacity building sessions for a variety of stakeholders and has conducted numerous workshops, training on disability equality, gender inclusion, accessibility audits; Universal Design, inclusive services, disability law and policy, RTI, child rights, women rights, public interest litigation etc. for lawyers, social workers, gender activists, design professionals, civil engineers, architects, educationists, service providers in transportation, hospitality, aviation, rehabilitation etc.
  • He is an Expert Member for Accessibility on Bureau of Indian Standards (BIS) Sectional Committee on National Building Code (NBC) (CED12) and has contributed substantially to the accessibility provisions incorporated in NBC 2016.
  • He was also on the Core Committee of Ministry of Urban Development, Govt of India for ‘Harmonised Guidelines and Space Standards on Barrier free Environment for Elderly and Disabled Persons’ which were first notified under Sec. 15 of Rights of Persons with Disabilities Rules 2017 as the Guideline for designing accessible Built Environment in India.

  • He is an Expert on POSH (Prevention of Sexual Harrassment of Women at workplace) and has been on Internal Committees of several organisations and has led investigations as a legal consult on the Internal Committees of Govt. departments and Public Sector Undertakings as well.
  • He is also a Member on :-
  • Standing Committee on Accessible Transportation and Mobility (AME50) of Transportation Research Board of National Academies, USA.
  • Bureau of Indian Standards Sectional Committee on Smart Cities (CED 59).
  • Committee of Experts constituted by University Grants Commission, Ministry of Education, Govt. of India for preparing Comprehensive Guidelines on Accessibility, Pedagogy and Curricula for Students with Disabilities in Higher Educational Institutions (HEIs).
  • He has been nominated by Department of Social Welfare, Govt. of Delhi as a non official Member on the Advisory Committee of Experts constituted under sub-section (7) of section 79 the Rights of Persons with Disabilities Act 2016 to assist the State Commissioner for Persons with Disabilities, NCT of Delhi with effect from 02nd June 2022 for a tenure of three years.

*The information on Subhash Chandra Vashishth ChangemakerSaathi story has been sourced from http://www.subhashvashishth.com



Artwork for the ChangemakerSaathi story of Subhash C Vashishth is done by our supertalented CreativeSaathi associate Shubh Pathak

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changemakersaathi

Margadarshi

The Changemakersaathi story of Dr.Ambika Kameshwar Founder-Director RASA


Dear community members,

We feel honored and privileged to announce our February changemakersaathi story, featuring the renowned danseuse, vocalist, scholar, and teacher, Dr. Ambika Kameshwar. She is a true artist with international acclaim, who has shared her art with people all over the world.

With over 50 choreographed dance dramas and 10 complete Bharatanatyam Margams, Dr. Kameshwar is a true master of classical dance. As a music composer, she has composed music for several dance dramas and devotional albums, making her a well-rounded artist.

Join us in celebrating the work of Dr. Ambika Kameshwar, a true changemaker in the world of classical dance and music. Let her story inspire you to pursue your passions and make a positive impact in our community. Presenting “Margdarshi- The story of Dr.Ambika Kameshwar “


Ramana Sunritya Aalaya
Kalaimamani Dr. Ambika Kameshwar is a noted danseuse, vocalist, scholar and teacher of international acclaim who has travelled the world sharing her art with all. She is a choreographer who has choreographed over 50 dance dramas and more than 10 complete Bharatanatyam Margams. As a music composer, she has composed music for over 50 dance dramas and several devotional albums as well. She is a loved and respected teacher of classical dance and music and is well known for her ‘pattu class’ on Raj Tv and earlier on Jaya tv.



Dr.Ambika is held by all in high regard as the Pioneer of Applying Theatre Arts as a tool of Holistic Development for people with multiple challenges.

Her Ph.D. was on Natyabhinaya and she did her Post Doctoral Fellowship on the Application of Natya as a holistic developmental tool, as a Senior Fellow of the Govt. of India. She guides PhD Scholars as a registered Guide of scholars pursuing their Doctorate degree at Vel’s University, Pallavaram, Chennai.

Her dance and music career spans 50 years and her teaching career, 35 years.

“Dr. Ambika is fortunate and blessed to have imbibed and experienced the richness of spirituality, the joy and strength of which she expresses continually in all spheres of life”.

She served as a Member of the Advisory Board of PRASAR BHARTI & of SOUTH ZONE CULTURAL CENTRE till 2010, and as a Board Member of The KALAKSHETRA Foundation till December 2013.

She is the Founder Director of RASA – Ramana Sunritya Aalaya the organisation through which she fosters the holistic empowerment of one and all – with the inclusion of people with diff abilities – by the structured application of Theatre Arts and its tools.

She has been honoured with several awards, including the highest award of the Rotary – namely the ‘For The Sake Of Honour ‘Award, the Bharata Kala Ratna, Stree Ratna, Acharya Choodamani and the prestigious Kalaimamani Award for the year 2004 by the Tamil Nadu State Government., to mention a few.

Team RASA takes immense pleasure to inform that our Founder, Director Dr Ambika Kameshwar has been awarded the “Puratchi Thalaivi Dr. J Jayalalitha Sirappu” Kalaimamani award from Honble Chief Minister of Tamil Nadu Mr Edappadi Palanisamy and Tamil Nadu Iyal Isai Nataka Mandram.

She had received the Kalaimamani Award in the year 2004 from Dr. J. Jayalalitha.

Story source:- https://rasaindia.org/about-dr-ambika-kameshwar.html

Video source- RASA India


Creative representation for the ChangemakerSaathi story of Dr.Ambika Kameshwar is done by our extremely talented CreativeSaathi associate Dhrov Tikoo

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BloggerSaathi

Destination منزل मंज़िल- ChangemakerSaathi Centre

“मन – day की बात SpecialSaathi के साथ” Author- Hina Khan Featured artwork by – Dhairya Pal

Changemakersaathi Centre- Story featuring Hina Khan, Founder-Director Destination school for special needs Hyderabad, Sindh, Pakistan.

We have featured Hina’s interview which was given to Mr. Humayun Kamran of Stars with HK a Pakistani Youtube Channel.

Please find herewith the Facebook link sourced from Hyderabad News- a Pakistani News channel doing a coverage of Destination school for special needs.

https://fb.watch/im2x4WRwoi/?mibextid=NnVzG8

Last but not the least, below is a podcast of Hina’s story in her own words.