Jaya Pandey
It seems like a simple idea: Being attracted to people like ourselves, people with whom we connect. We learn in our formative years to hand-pick our circle of friends and stick with the ones who allow us to be raw and authentic. These are the women who don’t need me to clean my home before they drop in. These are the women who knew me when I was blonde and now when I’m grey. But when a family has a neurodivergent member and they are new Americans, unversed in this new culture, and often unaware of the services available for their needs, there’s no time for building anything. It’s day-to-day survival. And it’s not uncommon for the threads of pre-family ties to become loose and untended. It’s during these times when Jaya Pandey reminds us:
Sometimes building a village is about forgetting the kids and remembering the woman.
Right. You really need to hear more.
Our conversation begins here:
Jaya's Desi Moms Network helps moms of special needs children remember their own needs as women.
Photo: Stephanie C. Olsen
Tell me about meeting Cheryl Ryan Chan (“I Will Use My Rage for Him” The Advocacy Issue 2023), who nominated you as a Pink Chair Advocate, and how that meeing influenced starting the Desi Moms Network.
That meeting became groundbreaking. When you come across something, and you realize how fascinating, fabulous it is to have it and you don’t act upon it, that’s a crime! It’s one of the funniest stories of my life. And we swore that day that whatever happens in that room stays in that room, but I break that promise every time I go on stage or talk about the Desi Moms Network, and I spill some colorful beans!
It was groundbreaking in so many ways. I’m a brown woman, Indian. I grew up in India, moved to the United States. More than half of my life I’ve spent here, but I’m still an immigrant woman. I’m a different person. So when I walked into a mother’s retreat for moms with special needs children, I was the only brown woman in the crowd. I had attended three support groups before that, and I came back home crying and decided, “This is not for me.” So a weekend conference was a big step. I remember calling my husband from the parking lot, “I don’t know anybody, I can’t go in.” My husband, knowing me very well, played the perfect card. He said, “You drove an hour, you spent money on gas, you paid the deposit. If you come back home all will go down the drain.” He knew that I’m a value-for-my-money woman. He said, “Go, and if you don’t like it you can always come back.” I think that was one of the best pushes. So I went in.
I was registering and getting my deposit back when Cheryl came up to me and said, “That money does not go home, it goes to the bartender.” And I’m like, “What?!” I was still a good Indian wife, mother, whatever you call it. A one-beer kind of woman!
So I said, “Okay, what is the most expensive drink on the menu?” And here comes the Long Island iced tea. Little did I know that it’s four kinds of alcohol together. That’s a recipe for disaster! But that was the first time in my life. I left everybody home. I was always mindful of rules. I never drank. So, I let go, let loose.
I felt comfortable and was in a good place. I felt comfortable enough to say, “You know, I just don’t want to do this anymore. Everything is so difficult. I just feel like running away someday.” Cheryl and another mom who is a school bus driver, held my hands, and said, “Honey, the day you want to run away, we will drive the bus for you.”
You know how many times you go where you do not know people and show your vulnerable self and say things which you’re not supposed to say? I’m sure even the neurotypical families go through that phase. But to be able to say that, not in front of your closest friend but to a stranger, and feel that you’re not being judged—that remained with me.
Four years later, I started building this Desi Mom’s Village. I knew exactly what I wanted and what I did not want in my village. The circle of friendship was my main focus. If we don’t appreciate each other as women, our friendship is not going to last long. Build the friendship first and the kids come later.
How many women did you start with in this network? And how many do you have now?
There was a tiny group of women that already existed, around 30 of them. I joined that Whatsapp group, and found that they all had grown up children. They would meet, they would not meet, they were a Whatsapp-based group. People ask questions. My son is doing this, what can we do? That kind of thing.
In 2016, I was let go from State Street so I had a lot of time on my hands. And I am a woman who feels the vibe, I need to meet people in person. So I started meeting the mothers from the Whatsapp group all over the state and collected data about what they need.
I built a brand new group. It was very hard for them to come out as women. Everybody was just “the mother of a special needs child.” When I started hosting the lunches and dinners, I would say, “Your kid gets 30 seconds. That’s it. I don’t want to hear more—And you know, at my age, I could be very blunt—I don’t want to hear what is going on in your house right now. I don’t want to know if you have ABA trouble. If your kid is not potty training. We need to come as women.” I use those “36 questions to fall in love” quizzes as icebreakers. I want to know everything about you, and I will pick a piece which binds you and I together. Then we can be friends. So if you are having trouble with your school, or pediatrician, speech therapist, this is not common ground for me. But if you like to read, if you listen to music, if you have interest in walking or traveling, then we will like each other as friends. Then, once you are in my orbit, your whole family is mine. Then I will do anything to support you in any way I can.
“They go home with the feeling that they have a village. Imagine how important it is. That I have a friend with me who understands me.”
That’s incredible. Seems so logical! Why don’t we see ourselves as women first? I mean, initially, we think, “mom” and “wife.”
There are 320 women in the group now. I still press their shoulders when they introduce themselves, because they will still go to their mom’s thing. They all see me looking at them and are like, “Sorry, Jaya. I’m going back!” When I add them to the group, I make a phone call first. If we forget this, I’m like, “Okay, you call back tomorrow and find five things which that you happy, and they cannot be ‘spending time with family, my husband, and my kids.’”
So these women come in thinking they’re going to get advice about how to take care of their child with special needs and they realize quickly that this is a friendship group. What is the impact on their lives when they go home and are back to being special needs moms?
Empowered. They go home with the feeling that they have a village. Imagine how important it is. That I have a friend with me who understands me. So it starts with one connection. The rule is, when you come for a group dinner, you sit with a person you don’t know. There is a new person next to you, in front of you, and beside you. So you go home with three new connections.
You would be surprised at the connections. Two women, 15 years apart, born in the same hospital in Delhi. So many of them recognize each other. They belong to the same town, or they work in the same company. These women are traveling together now. That is the greatest joy of seeing them connecting with each other about things outside of their home. I went to a birthday party and one of the kids held the finger of another Dad, not his own. And they were jumping together. This group made those five friends into family friends.
It starts with one person. You and I will connect. Then slowly we bring the families together, and the village grows. The joy of seeing that child jumping on the trampoline with some other child’s dad was one of the biggest gifts that day for me. Another time, one of the women had to go for her visa stamp, so another woman from the group jumped on the plane with her, leaving her own family for 5 days. How many people can claim that kind of friendship? Until you know each other as a person, this is not possible.
And now everybody is talking about every other thing. The WhatsApp group buzzes with “I need help.” And women go to each other’s IP meeting, provide resources. It’s a very natural process. I just turned the order.
Have they told you what it was like before they found their village?
So again, the fun was different for many of them. So many of them said, “This is the first time we have come out for dinner, leaving our family.” This village gave them strength to stand by their children, help them nurture the relationship with their spouses, and find the strength to say, “I need my time today.” These women are not going to the spa. They are not going for manicures and pedicures. They might be meeting in somebody’s house at 9 o’clock, order some takeout and complain or watch a movie, but at least are together. So sometimes the group is buzzing with the new “Bridgerton,” or new song or new movie. And then it could lead to those wild conversations. And I’m thinking, “look at you!”
Five years ago, there was nothing in life of that sort, for many of them. Slowly the dads started saying that moms are happier. That makes a difference in everybody’s life. And you are not just going out drinking and dancing, you are bringing that support system home. You are bringing the resources home. My ultimate goal is every special needs mother should have at least one friend who gets them.
Slowly, I am bringing all my non-Indian friends on board. Cheryl is a powerhouse of knowledge, so she was very kind to come for a party and a dinner, and you know, just talk to the women. When I bring all my friends, I want the diverse set of women in the group to see a bigger picture. And look for resources and support. There are so many things these women don’t even know—70% of these women had no idea about the Department of Developmental Services (DDS) and its resources.
Wow!
Well, nobody’s there to tell them. Right there, number one: When they are not speaking. They are not talking. You don’t have grandparents at home to remind you that something is missing.
Also, once you start noticing, you are in a state of denial. I was like that. “Oh, I speak too much. My boys don’t have to talk too much.” It’s not that there were no words, but the social awkwardness is never been pointed upon. People do not feel so for years.” Oh, it’s just too much here, you know. They will outgrow. Boys don’t speak much, anyway, they are late talkers.” So you were starting your life with that, and then, how are you going to tell your friends and family? The shame and stigma is right there. Your day-to-day life is restricted. Your kid is having a meltdown. You start not going to these kind of events or socializing because you don’t want to deal with stares or those kind of things.
Isolating yourself.
Right. One of the women—she’s young. Her kid was 4 years old—said, “I want to host a party.” She did not know people in the group. but she openly posted in the group, “I want to host a birthday party for my son in Wellesley. Everybody is welcome. I can have 25 families.”
Well, those families showed up there, not knowing each other. I still tell her that she opened a whole new door. One of them said, “For the first time in my life I didn’t have to worry that he’s screaming or he’s having a meltdown.” So I think there’s comfort that these are your people.
You have a way of bringing out parts of the world that I didn’t know, but need to know about.
I don’t think I did it. I think I always say that it’s people around me who make me who I am. I’m very, very fortunate to have wonderful people around me. I have so many different villages. My mother used to joke, “You throw my daughter in the water, and she will bring three friends from there!” But they make me who I am, because I always found somebody to hold my hand..
I had the luxury of having those friends who were not speaking my language. They did not look like me. They did not eat my food, but they were there. So basically, I had the village. I just provided it for all these women who were not as fortunate as me.
BE A CATALYST
Inspired by Jaya? Here are ways you can support her:
INVITE OTHERS Jaya writes a blog about life, struggles, victories, difficulties, and issues being a special needs family. Her blog has given a voice to many moms and helped them overcome their struggles. Spread the word; let your friends and neighbors know they are not alone.
DONATE to the Autism Resource Center, where Cheryl and Jaya met.The Autism Resource Center looks for volunteers for fundraising events. Consider joining the Walk/5k Run Committee, Golf Committee, and Wild About Wine Committee. Visit wwwAutismResourceCentral.org/volunteer-2 to learn how to get involved in this community of families.
SPREAD THE MESSAGE on social media. Share our stories and our posts. Talk to your family and friends and have meaningful conversations about the special needs families and those who face isolation because of the lack of care of the caregiver.
