The federation for Children with Special Needs” hosts VOC every year. Every year I feel how under represented our community is. In general we Indians don’t take part in these Conferences. I have been trying to change it - bit by bit. Right before COVID ( March 2020) few moms from my group joined, The conference was in person. I presented last year with a group of women from different ethnicity but this year I wanted more of our representation.
I was the panelist speaker for opening remark for the Conference on March 1st - Addressing Stigma the post about it here.
For main conference I decided to speak on “Building Your Village”. I wanted this to be all about the village so chose 3 more moms with different age group of kids. 4 of us presented what it meant for us “The Village”
Four of us represented different sets of mind, needs and expectations. We all spoke about equality for our children in different ways and we all came from different walks of life. But in the end we all wanted the same - A better life for our Children. That is our vision for our family what is yours?
My sincere gratitude to Federations for Children with Special Needs, Organizing Team, participants, speakers and everyone who is here.
Today we present a concept of “Building your Village”- Desi way
Desi Means “people from your country” in Hindi - you will hear this word frequently in this talk today.
I am honored to have these 3 wonderful women sharing their experiences - Mona Roy from Lexinginton, Rajini Karthik from Burlington and Vertika Tiwari from Franklin.
Hello, My name is Jaya Pandey, grew up in India, With a masters degree in Chemistry, taught in high school in India for a few years. Got married, moved to Singapore and then followed my husband to the USA for his work with a toddler, my first born - ages ago and now live in Franklin with my husband(Ashish) and two sons (Ajey and Anand) . My younger son has Autism.
I work as a Business Analyst in a finance firm. Have multiple interests and passionate about writing, cooking, music, traveling and connecting people and organizations to one another. I write about various issues on my two blogs. I use Sarees as a medium to talk about social causes, relationships, people, disability, and life as an immigrant woman and a Special need mother. I am very involved in the Indian community here in MA.
I sit on the board of 3 prominent Non Profits in MA and part of the parents advisory council for Autism Spectrum Center in Boston children hospital . Today I stand in front of you as a proud Board Member of Federation.
I founded “Desi Moms Network” in 2017, a Global Community that connects Indian Moms with Special Needs Children across the world in a supportive village.
My story is nothing new - it's every Mother’s story. The story of finding ways to support your child. Create something if it is not there.
Anand was 3 and half when his preschool teacher noticed something was amiss.
Anand’s lack of social interaction in preschool and his teacher’s timely advice to seek answers and help and then speech and language delay as diagnosis was just the beginning. The diagnosis didn't feel like a big deal then but in third grade Autism officially entered our life and changed it forever. Memories of those years will haunt us forever. I remember how frustrated, scared and sad we were. And then I discovered help and support in a totally different way. Circle of friends, writing, cooking, music (especially Jagjit Singh’s ghazal) helped me survive that dark time of our life. Fast forward to the present day, and I know how timely, meaningful and important that was.
I met some amazing non Indian moms who helped, gave direction and held my hand in difficult times.
My 2012 India trip changed something. My blog was born with the thought that the family should know who Anand was and know what our life is like. Little did I know that the blog I wrote as a way of self expression will one day become a way for many to cope and move forward.
Visit MomLovesAnand.blogspot.com if you have time.
I started writing, collecting information, connecting people and learning the nuances of the Special Education world. In 2015 I joined the 100 saree pact with a promise to wear saree 100 times in a year. I wrote 100 stories about my life, people, situations and emotions and those stories became the voice for many moms all around the world.
I realized that there were many Indian special needs moms who were just as confused and clueless as I first was. I knew how uncommon it was for Desi Moms to have this kind of village. These moms were raising their children all alone, as islands. And I felt obligated to initiate a village for them, a very desi one. In 2017 the Moms Network was born. A very local one, based on Whats app platform.
It was a vision to bring the Indian moms together to create a community. A monthly dinner and small lunches were just the beginning.
In 2019, I started Family picnics. This was motivated by what we had missed out on in our own lives - being able to go out as a family.
I held “Meet the expert” dinners where special education experts spoke about various topics.
The pandemic and social distancing gave rise to the idea of creating The 2020 Family Photoshoot. Having lived that life ourselves, I know how important and difficult it is to make memories for families like ours. In my own small way I was able to bring smiles and happy memories to many families. During COVID we did many outdoors socially distant moms meet. Summer 2021 we started slowly and did few family picnics and summer 2022 we had a lot of family picnics. The idea behind was very simple - Meet other families who are just like yours and find the connection and keep meeting.
We were amongst the very early people to hop on “Checking on you”Zoom calls Where every Tuesday night at 9 PM moms will join the video calls. Soon we did “Meet the Mom” series where the seasoned moms from the group talked about “lesson learnt”.
During Pandemic on my 50th Bday The global Desi Moms Network on facebook and instagram was launched. That community is still in its infant stage.
When I started the “Desi Moms Network” I wanted to build something for moms. “What” I was not sure but “what not” that I was very clear about.
I had been to 3 support group meetings in the beginning of my journey and came home depressed and sad every time. I went with my own concerns and came home with everyone’s weight on my shoulder. It was very clear that a typical support group is not for me. Now When I look back - I realized that I didn't “fit” in because those support groups were not culturally inclusive.
In June 2013, I went for a Mother’s retreat. It was not ideal but a lot of fun and I had my first Long island iced tea, that story for some other time. I did meet some incredible mothers.
They are not from India so we connected over other things than our culture. We connected over who we are as women, mom, friend and thinkers. They explained nuances of American life, movies, songs to me and I talked about Indian food, sarees, Indianness and what makes me who I am but not stereotypical Indian.
I sat on all those ideas for a while and a few years down the road I implemented all those learnings. When it was time I kept the Indian moms in mind and created something beyond a support group, it is a village.
All along I continued building my village. I had friends who shared my love for music, books, poetry and sarees and yes I did connect with special needs families too Indians and non Indians.
The idea evolved and it is amazing in its current form, these 275 Mothers here in MA have found their friends beyond special need criteria. They sing, dance, read, travel, dine, exercise, and vacation together. They are keeping “themselves” in mind and connecting. You might find some of us in the City tonight if the weather gets better.
What is the idea behind this village - I have been asked multiple time - my answer remains the same - Find people you like, talk about “you” as a person, find something in you to connect - not your child’s diagnosis, nurture your friendship with something you enjoy, not stressing over IEP, spend time talking about you not your child and see how wonderful it is to “find” the person in you. Once you have that, your families will benefit regardless. If someone loves you they will love your child unconditionally.
Please find within you - what makes you happy, who you were before motherhood. People who love you as a person will accept your family the way they are.
Over the years Desi Moms Network has evolved and I credit all the moms in the group to make it what it is today. They held each other’s hand, believed in my vision, trusted my idea and made theirs. Some of them created a family away from family in this very group.
Different people have been differently impacted by joining this village, I have brought only 3 members to give you their stories and perspectives.
A community only exists if others join and become leaders, stakeholders and are willing to be part of this community publicly.
What I missed for Anand and he doesn't have a village I am trying to tell everyone to keep that in Mind, build their community and their kid’s too. After hundreds of hours of conversations and thousands of miles on my car, countless messages of gratitudes, streams of tears and abundance of love and gratitudes from the families I am at peace that many more families got what I didn't have. The feeling of belonging and the comfort of knowing that they are not alone.
Before I introduce you to the moms, I would like to share some pics with you. This is my village, You will find people who have seen me grow, I have raised my children with them, Some share my passion for poetry, books and music, some are my Saree Sisters and some are friends to do fun things with and then there are these families who get me like no one else ever did. In these pics I have blended all those tiny groups and have built a village.
I wish you a village who is there to cheer, empower, make you smile, uplift and encourage you and make you feel that “You are Not Alone”.
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