The legislature reception - Thankful to them who are on our side.

Walking into Massachusetts State House is always an experience for me.  I personally don’t get involved in politics , don’t enjoyed it but I enjoy my day there. I have been going to Autism Day for some time. This year I went for the 45th Annual Legislative Reception with the theme “Disability Workforce Equity Now!”

 I was in the company of some amazing people who have done so much for the disability community. The ARC honored two - a Senator and a State Representative for their support to our children. Many Congratulations and thank you to the Legislators of the Year! Senator Mike Barrett and Rep Christine Barber. 

Keith Jones’s empowering keynote speech will remain with us for a long time. His energy and enthusiasm is infectious. So powerful. He is an inspiration in a way for everyone who has a disability but “can do” with their village around.

For me it was more than just an ordinary day. I got to meet so many old friends and made some new ones but more than that I was not the only Indian woman in the crowd. I am so glad two of the moms from the Desi Moms Network joined me. 

The representation matters, being there matters and more than anything - every voice matters. 

 We all need to be thankful for how far we have come but remember that much more work needs to be done. 

 We all need to be thankful for how far we have come but remember that much more work has to be done. and yes - No saree this time. I had been asked by so many people I guess next year I really have to plan well.

What is your story? "Embracing Equity” What it means for me

Workplace recognition matters some time.

I was featured in company’s Women’s month highlight. My story below- 

For me, “Embracing Equity” means forging a path of connection with other parents. When my younger son was diagnosed with autism, I didn’t know a single family like ours. This inspired me to build a village for Indian moms and children with special needs. Our community is not your typical support group; it’s a place of empowerment. These women helped make my vision a reality, and it’s been amazing to see our group of more than 275 mothers sing, dance, read, travel, dine, exercise and vacation together.

Throughout the pandemic, I hosted Zoom calls, set up outdoor photoshoots, organized socially distant get-togethers, and have since organized many more gatherings where families could enjoy being together in a no-judgment zone. This year, we started a similar group for dads. I have been blogging about my journey as a means of documenting this experience, and would invite everyone to consider doing your part in creating an equitable experience for families of children with special needs.

Link - https://www.statestreet.com/us/en/asset-manager/insights/international-womens-day-equity

A simple lehriya saree for a High Tea hosted by another mom from my network. 8 of us together around that table - empowering and cheering each other. Our children sure brought us together but its the mutual appreciation and respect which binds us together.

What is your “Vision of Community”? Let's have a vision for all of us.

 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 Notes 

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”.

Addressing the Stigma - The video recording

Addressing Stigma 

Hello everyone, So grateful to be here and I cannot thank Federation enough for having this conversation today and for the Vision of community conference.

I hope you learn some, connect more and find strength and make this world a better place for the next generation.

My name is Jaya Pandey and I am here today as an immigrant and brown woman and a human being, community builder and a mom.

I am honored to share the space with these wonderful panelists. 

Whatever I say today is my view, my opinion, I don’t claim to represent any specific group or community. My experiences come from my life and 100s of moms I interact with but they are my interpretation and my understanding of their situation. I might be wrong and I tell you how many times I wish I should be wrong. At the same time I would like to thank each one of them for sharing their life stories and opinions with me. Please know you all make me the woman I am here today.

We are here today to talk about Stigma - What is stigma - a mark of disgrace associated with a particular circumstance, quality, or person.

But if you are from India - Stigma is “Log kya kahenge - What people will say “ because that's what drives the society 

-How can you address something if it is ingrained in your day today life like breathing and our DNA, Stigma is everywhere but mostly in our attitude.We care for others more than our own family and wont even admit.

We need to bring some basic changes and be able to talk about difficult topics, we need to stop glorifying parenting and 

It would be helpful if doctors/ providers/ therapist/teachers are curious about how parents are coping with the diagnosis and educate themselves about the cultural differences that might exist between the provider/ teachers and the family to provide culturally appropriate care.

You have heard two esteemed speakers talk about their view. I grew up in India and as of today, have spent half of my life outside India. So I am a mix of Indian- asian, Brown, immigrant woman from a model minority and a mom of a child with special needs, a community builder and an activist sometime. So I think my experience is a little different in some ways.

In general we live in a academically obsessed performance oriented

society, top grades, ivy league colleges and 6 figure salary to start with is a key to success. How well we and then our children do that defines our success. Children are reflection of their parents so its hard for us to accept our vision for our child can be different and that crushes the parents. That forces us to have unrealistic expectations from the child to do ‘normal’ things which are extremely challenging or flat out impossible. 

Religion is such an integral part of being Indian, 

I let my values, spirituality and belief system guide me with everyday life. But In India religion dictates your life,  Karma and reincarnation is the best used logic and sometimes it is used as a coping mechanism I think.

So disability brings shame, complete flat out denial, and disengagement.

Religion might bring another aspect - Parents and grandparents might turn to temple, Gurus, pandits and prayers, hoping doing some more of religion chanting, pilgrimage will somehow cure the disability. Culture and religion both has its own hold on people whether it’s direct or indirect, A mom shared with me -when the kid got diagnosed with Autism , first thing the grandparents did was show his horoscope to priest, rushed to many temples, donated tons of money

This whole scenario brings another layer of loneliness 

The educated lot In India or abroad might be a little bit more willing to learn about disabilty and its impact on their children/ young adults through their lives. The vast majority in the country may not be as willing. As a result, families in the United States may not be able to share with their extended families the diagnosis, the implications on the child's education and future. This can be again very isolating for the parents.

We expect a quick cure for their medical conditions. And the fact that autism is a neurological condition that causes significant lifelong disability is difficult to digest. Many parents tend to look for answers in alternative streams of medicine, diets, and much more. 

 Then there is another set of complexity - the Difference in empathy and sympathy - “God only gives things to those who can handle” Or its the karma you are paying for. I fail to understand what kind of “God” or superpower believes in punishing a child for previous birth’s karma.

Families are usually reluctant to talk about medications, effects of medications, that medications are even necessary or that they consulted with a psychiatrist or a psychologist.  Mental health conditions are considered to be a weakness and never discussed within families. Often this is kept as a well guarded secret. Parents worry about what others would have to say about them, their child, their family. As a result, moms/ parents are reluctant to share about this, even among friends or or in their social groups. The child is on a medication for depression, anxiety, attention, etc is a huge deal. Parents worry that this might affect their social image in the community. If a child doesn’t do something, it’s the ‘mother’s fault’ and some free advice on how the families should enforce discipline. 

In some cases, the mother of the child might be implied as the cause for the disability leading to complicated family dynamics and a disruptive social environment.

What can be done, how can we move forward in the direction -

Because the learning curve is very steep, learning the system, going around for theories, doctors and then paperwork and documentation is mind boggling and most immigrant families don't have any social support available.

What can we do

Open a dialogue - family friends? If people ask - what can they do - educate them, have a list ready of support.

Self care - Down stretch yourself too think

How a supportive community can help. Education and awareness is the key. 

कौन कहता है आसमाँ  में सुराख़ नहीं हो सकता 

एक पत्थर तो तबियत से उछालो यारों 

Video recording here - My segment is after 52 mins counter 

https://fcsn-org.zoom.us/rec/play/YK_5LMHYbWsKKAXdrs2q8OAfSTU1eTB5QcNxCMpA_d5jJA6qZSV2Md_DzGxfja-y5Y79P5-iHehd5wXm.WxRU5C6iQZFV5JFI?continueMode=true&_x_zm_rtaid=Z3thWQxXSnuGdPp3pm0VgA.1677808679561.442592adf4ab7c5bec4af6ee82770e7a&_x_zm_rhtaid=40

Looking for support - journey of 10 years how far we have come

Last night I was trying to post in a group - about Federation’s Vision of community conference.

The FB group - “Indians in Boston - Boston Desi’s” and thought of checking my last post. Looks like I hadn’t posted anything but once. Oct 2012- asking for support.

Here I was reminded me of my past. 10+ years ago,  You can imagine what social media was at that time, not much for disability support groups or information. But I was so desperate that I posted on a site looking for it. No-one responded or reached out , just two likes (thumbs up).

And fast forward here I was posting information to support families who are like mine. 

I remember frantically looking for families and any kind of cultural support not knowing where to look for, whom to reach out. I had already wasted few years living in my shell. I couldn’t find anything that time but then 2013 changed many things. I went for 3 support group meetings and a moms retreat and then rest is history. Those “failed” attempt to find support led me to build “Desi Moms Network”

Today I urge you to open your heart and world to families who needs it. Someday it will come back to you in multiple folds.

This was the reminder of my journey and now after 10 years this coming weekend I will be addressing “Build your Village” at “Vision of Community” conference hosted by Federation for Children with Special Needs.  

Dressed up for a celebration - 50th Bday party - My village is something I am grateful for, Met many new people, but some of them were aware of my work and wanted to express their appreciation and asked if and how they can help families. The host must have talked about me with her friends. How interesting the way we expand our village. 

Will you talk openly about your trauma?

 A friend, who is an integral part of my village, connected me to a Desi Mom few months ago. After few text messages were exchanged, I met her recently.

As soon as I walked in I noticed how calm the house was and one of the cleanest houses I have seen. Not in a filmy or decorative way but in a classy way. It had a totally different vibe. 

I sat across the table listening to her talking about how she kept herself away from the Indian community to remain sane. She built a wall and raised her children without an Indian community around. She is grateful for her circle of support - wonderful teachers, therapists and support staff but not any Indian families. She is one of those few moms who doesn’t want to be part of any Desi group.  She will reach out to me, will remain connected  “ at least for now”.

She feels our folks lack emotional maturity and are not good listeners and have no respect for boundaries, personal space or time. 

Our conversation just flew and then the ball of yarn started unraveling. It was not her kid’s disability it was her childhood that made her who she is today.

Mental health was not talked about in my generation, neither an abusive relationship. We have glorified “Motherhood” to the extreme and are supposed to feel that “motherhood” is the best thing on earth. But is it really true? We have seen plenty of mothers who shouldn’t have had children to begin with. A Narcissist mother can be over powering and can push someone to another extreme. She said her children’s autism is nothing compare to the trauma she experienced due to her mother’s borderline personality disorder, Histrionic and Dependent personality disorder and the stigma associated with it made her childhood very difficult. I am still trying to process her experiences. 

Have you come across these things in your life. Would you ever talk publicly about the what you went through with your close family members?

How can we address stigma around mental health in our generation?   

Addressing Stigma Wednesday March 1st 6 PM ( EST)

India 4.30 AM 

 ***Free Event Open to all***

2023 Vision of Community  Conference Hosted by

**Federation for Children with Special Needs **

**Access information, resources and support for all caregivers including, parent, grandparents, foster parent and guardians and other designated representatives.**

Please register The event recording will be available 

https://fcsn.org/voc-pre-conference-events-registration/

Learn more about the conference

https://fcsn.org/visions-of-community-conference/

On Saturday March 4th - I am speaking on "Building your Village" with these 3 amazing women, We met for brain storming session. So much fun. Hope to see you all there. Register for the conference today.

How would you build your village? Over a great meal, an insta reel and some magical drinks?

I have been asked multiple times what is so different about “Desi Moms Network” and my answer is the same - It is not a group it is a village where women connect differently not as a wife or a mom but as a human being. It is not your regular ladies group it is the place to uplift and support each other. 

A group of women from my music  group met to spend an evening , we have been meeting for quite some time once a month as a musical group. But did we know each other ? Or were we friends? 

One dinner invite brought some of us together and amidst amazing food and drinks I asked a question- How did you meet your spouse. What did make you say -“yes”

That’s how we build a village, a thought provoking question initiates many things. The question was simple but the answers were the explanation of what love, respect and marriage meant to all of us - “Then and now” the stories were intriguing enough to keep us chatting till midnight.

Some middle school friends followed each other across continents, someone thought marriage was the way to freedom and fun from a very conservative household, someone agreed to be a mom, raising someone else’s daughter because it just felt right and talked about her struggles in the process, someone was asked a question about spontaneity in the first meet and that was enough to seal the deal. Someone was so young that love at first sight was just enough, the idea of “love” was more important than anything. For one it was the right thing to do to ease the parental responsibility, for someone accepting her the way she was enough to leave everything behind and move to USA and for another the willingness to start afresh after a heartache was enough to take that plunge.

I will come back to these stories in more details some other time. Today it is about the feeling we carried with us, a new found connection and friendship, the craving to do this often, meet again. Surprisingly none of us talked about our jobs or kids and not even the husbands for that matter. It was all about what it meant for us as women. 

What is your story? What does marriage and companionship means to you - Now and then?

A Kosa silk from my home state 

Gorgeous host 

The Gang 

This is just the beginning, we were having too much fun to take pics of dinner and dessert