Jaya wants to talk about you, not your kids

Photo: Stephanie C. Olsen

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:

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.

Inspired by Jaya? Here are ways you can get involved with her mission:

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.