"One Life in This Lifetime: Chandu Bhai—How Would You Like to Be Remembered?"

Last week, Boston lost one of its kind. He wore so many hats that we forgot who he truly was. He turned into something you wanted him to be. He was a businessman, poet, producer, director, artist, writer, organizer, playwright, filmmaker, and above all, an amazing human being—Chandu Shah.

The memorial service was one of a kind, even with the busy festival weekend; it was busy. A lot of people spoke about his involvement in various groups, events, and organizations, and his human side. I saw people of all ages. Not only his circle of friends who were in their 60s and 70s, but also a lot of younger crowds were there to pay their tribute to a man who was there for everyone.

His life was worth celebrating, and that brings up a very interesting topic. How would you like to be remembered? Do you think about your life beyond? Have you made a list of things to do before you go? Do you have a bucket list?

A Geecha Silk Saree for the memorial.

The Next Chapter - What are you looking forward to ?

Years ago Some of the parents got together to find a better way to  provide their children appreciate care and life. that was a humble beginning of Advocate and as of today this organization staffs 2200 and supports 45,000 children, adults and families, one can imagine its impact on the community.

From the Advocates website - Advocates is committed to helping people with autism, brain injuries, mental health challenges, intellectual disabilities, or substance use issues live healthy, happy lives in the community.

We partner with individuals, families, and communities to shape creative solutions to even the greatest life challenges.

I was honored to be part of it celebration gala as one of the board member. A chili evening in the city, a long drive turned into something amazing. As I walked in the enchanted forest theme I was caught into its spell. 

That evening some of the moms from the Desi moms Network got together to have their own celebration of festival season. Gathered in one home, getting Henna done, being together and celebrating their village. I spent an hour with them before I started for Boston to be part of the gala. I dont have enough words, I will let the pictures do the talking.

How important is it to have a village, Do you feel you have one of your own? Where you belong? Your child or family belong?

A simple blue Kanjivaram for the evening. A brown women in a saree, I sure was one of a kind that evening.

                                    

Do you seek help? Why or why not?

 Our family is a mixed bag of fun, excitement, arguments, love, food, laughter, and frustration. I would like to think that it’s not an easy ride for us, or some days I feel we have it all. I am sure everyone feels the same way one day or another. Whatever the case, any given day, I look forward to another day.

I went to visit a facility run by an organization of which I am a board member. I am still learning about the incredible work they are doing. A visit to their Community Behavioral Health Center was an eye-opener. How the mental health crisis is so relevant and often ignored until it’s too late.

While talking to a friend, who is a social worker and mental health clinician, our conversation turned into the "shyness" of the Desi community and the delicate balance of mental health. She is one of those rare Desi social workers. We both wondered if our community is truly as well-sorted as it appears. I totally understand that Indians are called a model minority for a reason (it’s a myth, but that conversation is for some other day). While everyone seems to be doing well and living happily, is this reality?

I strongly believe in the importance of mental health support.. Desi Moms Network is based on that very need. Years ago I needed someone who could understand what I was going through as Anand’s mom, and that piece was missing. Desi Moms Network is the result of that need.

When faced with challenges, do you actively seek help? Do you think you can handle whatever comes your way on your own? Do you feel overwhelmed? What about your children? are you attuned to their reality?

A black gold Chanderi for a music meet. This was another mental health remedy for me. 

The garba in my town, so many people happily dancing and enjoying their time. What is going on in their homes no one knows but at least that evening everyone was just having fun. Dance and music and the whole village - that was just enough for that evening.

My colleagues came for dinner and Anand sat on the table and ate with everyone, even with his video on , this was a big deal for me.

Oct 2012 I was looking for my village and couldn't find any so build one. Here we are 11 years later I can say these 300+ mothers are very lucky.

What is your definition of anxiety?

Boston Children's Hospital has some wonderful initiatives, and I am very fortunate to be part of some of those conversations. As a member of the Division of Developmental Medicine's Family Advisory Committee, I get to hear how the hospital aims to improve the lives of our children. The team continues to implement new ideas, theories, treatment plans, and many more advancements. They seek suggestions from parents.

 When I was requested to join, I didn’t know if I could contribute in any way, but they were sure that my experience would be helpful. Now, thinking about it, I bring not only my experiences but also those of over 300 mothers from Desi Moms Network.

In the last meeting, the conversation was about anxiety and its effects on families, not only the child. Also, many of us seasoned moms thought the same — none of us had any idea how to define anxiety as such. The triggers were not even identified. Now, I think so many meltdowns could have been avoided if I knew the triggers.

Today, parents are more aware and seek help before things get out of hand. But there are still many in the dark. I so wish we had these tools available. However, life is about moving forward and sharing knowledge and supporting one another.

Below are some symptoms of anxiety. Seek help if you or your loved one feel this way:

1. A churning feeling in your stomach. Acid reflux 
2. Loosing interest and feeling of pins and needles , heavy head
3. Feeling restless or unable to sit still. Feeling nervous, restless or tense

If I feel anxious, I meditate, shower, dress up in Saree, drink a cup of nice wine, go for a walk, listen to Jagjit Singh. What do you do?

A Pochampalli Ikat for a dinner out. This saree is a gift of love and care. 

A friend visited home and met Anand for the first time. He was busy playing his game but he paused to say hello and when she asked happily explained the game he was playing.

A house - when it becomes the home

 I often get calls from parents, especially those with special needs children, inquiring about the best school districts. It seems that the search for the perfect school district has become a remedy for everything. All we really want are excellent services for our children, but is that truly sufficient?

Just the other day, I had a conversation and to my surprise, the father expressed concerns about the commute in Massachusetts. He had a short commute, and relocating to MA seemed like a daunting challenge for that very reason. We discussed how crucial the short commute is for our families as it enables the fathers to be an active part of the family unit.

As I engage with more and more families, I find that our focus on the school system often causes us to overlook some fundamental principles. What truly matters are happy and kind staff, a robust program, a strong inclusion policy, dedicated teachers, engaged parents, and a close-knit community than just a very well written IEP.

A close friend once told me about his upbringing in a less-than-ideal neighborhood. For him, having a vibrant, diverse, and thriving community was the first requirement for raising his children.

So, what do you want for yourself and your children? What is genuinely important to you? Is it a spacious house or a vibrant neighborhood? The answer might not be as straightforward as we think. What is it for your family  that truly transforms a house into a home.

A kosa silk from my home state a meet. 

We moved to Franklin when he was 3. He doesn't know anything else , this town is his Home.His mother is a different story. I dont feel "home" anywhere. 

A Teacher's Perspective: When Parents Need Help Before Their Children

Today, I spent some time with a special education teacher. We met for a Cranberry bog tour and had no idea that our conversation would take this turn. After our initial introduction, we found ourselves with a lot to discuss, but it wasn't about the group we were a part of or the purpose of our tour. Instead, we delved into the world of special education, families, the struggles, and the ethical dilemmas that teachers face.

Normally, I'm more accustomed to hearing the parents' side of the story, but today was different. I listened as she described how parents often dismiss the concerns that teachers have, how stigma and shame can overshadow the well-being of children, and how parents sometimes refuse to give consent when teachers want to evaluate a student. Red flags are sometimes entirely ignored, and in some cases, disgruntled parents write to school principals, accusing teachers of trying to label their child without cause.

She also shared many stories about Indian parents. They often demand "extra" homework for their children, advanced math and reading materials, without considering the burden of these expectations. She frequently worries about how to support these kids who unquestionably need help but are unable to access it because their parents are unwilling to accept the label of special needs.

I've heard countless stories from parents about their relentless battles for services, how their children don't receive adequate support, and how schools sometimes try to push these children out of the system, even when they aren't ready. I was already aware of the prevailing stigma and state of denial in this field, which was one of the primary motivations behind creating Desi Moms Network. Nevertheless, hearing this teacher's perspective was quite eye-opening.

All of this brings me to a profound question: Would you inform a friend or relative if you noticed red flags in their child's development, or would you choose to remain silent?

A silk saree for a navratri visit. Met some amazing mothers over a delicious meal. Saw a pumpkin patch on the way, had to stop and take a pic. 

and here is my sunshine. someone from my village sent this pic.with a comment - "So proud of him"

What is Marriage for you? Support? Respect? partnership? or none of the above

Desi Moms Network has brought many wonderful women and families into my life. They have brought joy and fulfillment, satisfaction, pride, and heartache too. It's painful to witness the struggles and disappointments.

Last week was tough; two moms from the group reached out with frustration and outrage. They were dealing with interference from in-laws, their husbands' attitudes towards household chores, responsibilities toward their children, and money management. They are handling school meetings, therapies, medical appointments, dinner, homework, and working full time.

I've been thinking about what marriage means in these households. I am in no position to judge or advise anyone, I am sure the dad's have their side of story too. The fact is that couples with a special needs child experience more stress on their marriage. Some grow apart, while others stick together and become a team. I've come across some very involved dads, and that is such a positive change. But what about those families where women are taking care of the household and children and not getting due respect? Marriage means support, respect, companionship, love, commitment, partnership, and the creation of a family unit regardless of culture, country, or caste. But these families have different stories.

What is marriage for you? Is it partnership? A legal and financial arrangement? A social status? A burden? A responsibility? A mistake?

A Cotton Paithani for a celebration - Hindi Manch an organization I am part of - celebrated a successful show - “Begani shadi me”My first born was my plus one.

A place for solace and closure - Where do you turn to?

 I have been asked many times what comforts me given the scenario in our life. Away from family, just the four of us, with an uncertain future for Anand. When you have a child who doesn't fit society's standards, these questions are very common. And when you bring people together, those same people want to know what makes you who you are.

I grew up in a religious household and practiced religion. Once I got married, my husband's thinking certainly influenced me, and slowly "Karma" became my "Dharma."

I was invited for a Path (Prayers) in a local Gurudwara (a worship place for the Sikh community). I had been there before. For me  the prasad (the food offerings) is always a big plus :) But more than that, I am in awe of the concept of "sewa" in the Gurudwara. Many friends showed up to cook, serve, and even clean. I come back with a feeling of calm and happiness. I'm not sure if it is the path, the place, or something beyond words.

What does religion mean to you? What keeps you going? What works for you to keep your head on your shoulders?

A simple cotton for a perfect fall day. 

My fav sight of the day, mom trying to teach the daughters to keep the head covered.