Support & Mentor Special Needs Mothers in India

Saranya is a wife and mother of two children. When her youngest daughter was born with a developmental disability, everyone in Saranya’s life blamed her. Before enrolling in Priyam’s program for mothers of children with disabilities, Saranya’s life played out in her home—she had no reason to leave her house, and felt very isolated. She could not find a job that was flexible enough to also allow for her to care for her daughter, as each morning and afternoon she needs to accompany her to and from a special education school. Saranya became depressed, and the poverty that her family lived in made everything worse. But then she was given an unexpected opportunity when she was invited to join Priyam Global’s MAHLA (Mothers Access Health, Livelihoods, and Advocacy) program in 2018. We sat down with Saranya earlier this month to hear in her own words how being a part of this program has changed her life.

Interview designed and edited by Michaela, Priyam Global director. Interview led and translated by Gereena, Priyam Global social worker and program coordinator.

G: Before you joined the program, describe how you felt about your life at the time. What thoughts and feelings did you have most often?

S: Before joining this program, my life was a question mark without any answer. I felt very lonely and isolated. I would go outside and mingle with society, but I was unable to share my happiness with my family, friends, or relatives. Very often I felt I must have committed some sin in my life, which is why god has given me a special [needs] child. Everyone ignored me since I had a special child. I was not able to attend any family occasions because they would see me with pity and talk behind my back. This made me feel upset and weak.

G: Before you joined the program, describe how you spent your time. For example, describe what would happen in a typical day.

S: Before joining this program, I mostly spent my time doing household work and taking care of my three children after they came back from school. My entire world was in that house; without any rest, I was the only one behind all of the things that needed to be done to maintain a good family, without any encouragement from anyone, including from relatives or friends.

G: For you specifically, what was the best part about being in the MAHLA program?

The best part about the MAHLA program is that we [the mothers in the program] were able to develop many new friendships and we began to know each other very well. Before the program, no one knew each other, but now we have all become like one big family. 

G: What has changed in your life and in you since you have been in the MAHLA program?

S: The best way that my life changed through the MAHLA program is that I now feel that I am a “super mom”. I don’t compare with others anymore and I celebrate each and every little thing around me. I made new friends with whom I can share my thoughts and experiences freely. I am no longer experiencing as much depression after entering into the Mahla project. I have also become more aware of health: cleanliness, hygiene, and nutrition because of the education sessions. Now I am focused on creating a life where I can live for many more years with my child.

G: What did you learn about yourself during the program? Did you discover anything new about your talents or interests, your feelings or your personality?

S: This project made a drastic change in everyone’s life, not only mine. I didn’t miss any of the training hours or educational sessions because I wanted to gain as much knowledge as possible.  This knowledge has allowed me to improve my personality and gather new ideas to develop and grow as a women with a special [needs] child. Before coming to this program I built a barrier for myself in which I believed I couldn’t do anything new. I would always depend on my husband as I didn’t have a proper education. Now I have developed courage and self-confidence through continuous training and awareness classes. I would like share my experiences and knowledge with [other mothers] so they can feel motivated to become independent in their own life.

G: Has anything changed in your family because of the program? For example, has your relationship with your husband changed? Has your relationship with (or understanding of) your special needs child changed?

S: Of course, many changes have occurred because of the project, especially within my husband. Previously, he did not involve me in anything. However, after I started learning new skills he got began to believe that I could acquire a better position by earning more money. My family members and friends now have more respect for me and even ask my opinion for new innovations in their life. This has made me feel like the happiest person in the world. If I had said no to [joining] this project I would feel like I was of no value, like trash in my house. My future has truly changed from this program — now I have the confidence to face any problems or issues that can happen. My past was a tragedy and my present was unhealthy, but now I would like to make some changes in the future, not only through my personality but from being able to stay stable and strong. I am so thankful that I had an opportunity through this MAHLA project.

In the rush of program management, planning, and implementation, it is really easy for me to forget to stop and reflect. Where have we been? Where are we going? Partnering with GlobalGiving has been really helpful to us as an organization, and to me as a leader, in many ways. One in particular is the way that GlobalGiving incentivizes partner organizations to continually learn and grow in areas of engagement and effectiveness.

Recently, I completed a GlobalGiving exercise designed in three simple sets of questions to help organizations reflect on how they prioritize listening, acting, and learning as they move forward with their work. I have shared it below, in hopes that it will give you a glimpse into our work, why it matters, what it can accomplish, and the commitment that we have to always listen, act, learn, and repeat. 

Read time: 5-8 minutes

Listen: What is a need, challenge or obstacle that your organization has faced? How did your organization identify it?

When we were designing our first pilot (2015–2016) of our targeted support program for mothers of children with severe disabilities in poverty in India, we visited the homes of nine mothers; of these, seven would eventually enroll in our first pilot. Based on information gathered during pre-visit interviews and during our home visits, we knew that the majority of mothers felt incredibly overwhelmed by their caregiving responsibilities - in addition to caring for a high-needs child while having relatively low knowledge about their child's disability or needs, almost all of the mothers were also solely responsible for maintaining their households, as is the custom in traditional Indian culture. Fathers earn income, and mothers maintain the household. All of the mothers wished that they could earn income to supplement their family's needs, but they did not have anyone to watch their child while they were at work, and their child's needs varied so much that any work opportunity needed to be very flexible and supportive.

During our first pilot program, most of the women were mothers who had enrolled their child for 5 hours each day at our partner special education school. However, there was one mother who was a widow, and who lived too far to enroll her child in a daily school. Her son was almost 18 years old and had severe cerebral palsy. His mother had no way of earning income and no wheelchair to give her son some mobility, so she relied on extended family and her son spent most of his time on a bed. When we visited this mother in her home, I was struck by how blank her expressions were; she never smiled. She said she had no friends, and although her father was supportive, she worried constantly about the future – what would happen when her father was gone? We invited this mother to our program, thinking she would be excited at the possibilities it would offer. We assumed that her extended family could watch her son for a few hours each day while she enrolled in the program. The plan was that we would pay her transportation across the town to the center each day.

However, she told us something unexpected: her family was also very poor, and as they knew she would be earning a small cash stipend in the program each month, they would expect her to pay them for watching her son. So, her earned income would go towards paying for care for her son rather than towards buying what they need and building up some savings. 

Act: What actions did your organization take to address this issue?

I was determined that this mother would be able to enroll in our program. She was clearly depressed, and her son spent all of his life on a small bed in a tiny dark hut. Both of them deserved a better life. We had already allocated money for transportation, but now it seemed that her son would have nowhere to go while his mother was learning job skills, health education, and building relationships with other mothers.

When I asked our partner school if her son could spend those hours in the school, they said this wasn't possible because they were understaffed to provide for all of his needs. So then I suggested that her son come to the center with her, but the mother responded that he was very attached to her and if she was nearby, he would constantly demand her attention and she would not be able to engage in the program.

This may seem like a simple solution, but it finally occurred to me to create a special line in the budget to hire a part-time caretaker who would accompany the son to the school each day and be with him at all times. When I suggested this, there were no other barriers to the mother attending, and she agreed to enroll.

What did you learn from your experiment? What will you do next based on these results?

The lessons I learned from this challenge shaped how we approach our program model.

First, I learned firsthand that one of my favorite sayings – "everything is figure-out-able" – is true. Marie Forleo, a well-known businesswoman, coined this phrase, and I truly believe in it. There is always, always a solution.

Second, I learned that when designing a program for real people, especially those who are facing a lot of challenges, a one size fits all approach is never appropriate. I wanted to be fair in how I designed the program, but I realized that some mothers in our program were facing greater challenges than others, and thus a greater level of support was entirely appropriate. This experience strengthened my resolve to design a program in which no one would face challenges that we overlooked. This is particularly important to us because the families we work with are consistently families who have been overlooked by other programs, initiatives, and projects because their needs are so complex.

The mother in this story completed all twelve months of our first program. At the beginning, she seemed withdrawn and nervous. Three days a week, however, she showed up to our center determined to learn. When making jewelry was difficult for her and a few other mothers, we learned that they had poor eyesight, which (perhaps again surprisingly) was not something we considered! We were able to arrange free eye care for her and the other women who needed it. When the mothers began to learn tailoring, this particular mother began to shine. She had a talent for sewing, and began to help other mothers learn the techniques. She began to smile more easily, and her confidence steadily unfolded. When her son became sick, she was able to use money from our emergency medical fund. When she graduated from our program, she used her saved cash stipends to put forward 50% of the money needed to buy a sewing machine and Priyam Global matched the other 50%.

Shortly after graduation, she moved to a rural area to be closer to her family and to build a small home on a plot of land nearby. She took her son, her daughter, and her sewing machine with her, leaving us with one of the most important lessons we have learned: To fulfill our commitment of creating a program that provides women with the psychological space and relief to plan for their future and change the course of their lives, we must stay curious, aware, and creative.

"We became like a family," she said. "We helped each other. We shared our problems."

Radha's face lights with her trademark smile as she says this. She is holding a length of vivid orange fabric, eager to demonstrate her new tailoring skills on the machine that she worked for last year in our first pilot of the Mothers Access Health, Livelihoods, and Advocacy (MAHLA) Project.

After completing nine months of training in tailoring and jewelry making, and sixteen weeks of one-hour classes on topics ranging from nutrition and hygiene to self care and creative methods for managing challenging child behavior, Radha saved half of her stipend for the last few months of the program to buy her sewing machine. Priyam Global matched 50% of the cost, and Radha received the machine during the October 2017 MAHLA graduation ceremony. Nearly 200 people, including other special needs families and the director general of a nearby hospital, attended the ceremony.

Radha says that while she has increased her family's monthly income by about 25%, she wishes that she could do more. "I had a dream of making a group of mothers from our program who collectively rented a small shop and took sewing jobs together." They could earn more that way, but she says that there weren't enough mothers in the 2017 program who were interested in joining together.

There are several reasons for this. First, three of the seven mothers from the 2017 pilot program are now employed full-time by our partner school Hope as teacher's assistants, in part due to the dedication they showed in the MAHLA program. One of the mothers has moved to her extended family's village, and the remaining two live too far away from Radha to make the sewing collective worthwhile.

Following my meeting with Radha in January 2018, we have developed two solutions.

First, we will support the 2017 MAHLA Project graduates to meet monthly for a shared meal and conversation facilitated by our social worker. All of the mothers say that they miss their group and the time that they shared, so this was a simple solution.

Second, as our 2018 MAHLA Project cohort has 18 mothers enrolled, we are taking a more organized collective approach to their income-earning endeavors: they will form two collectives, with a shared bank account for each collective. This allows them to be more eligible for government women's empowerment grants, and with greater numbers they have an increased chance of being able to do something like what Radha dreams of, and go in together for the rent costs of a sewing shop. 

Radha will be invited to join one of the 2018 collectives. This way, she can expand her client base beyond her immediate neighbors.

Founder's note

It was so good to be able to follow up with the mothers from our first pilot. To be honest, I was nervous as I prepared to visit their homes. Did we make any lasting change? Was all of this worth it? Are they doing alright, since the program ended? 

Following up at the end of a program can be scary, which is perhaps why many organizations avoid it. Change is difficult, and hard to measure. But my visits showed just how worthwhile these follow up visits are. Although the monthly income has increased due to the mothers' graduation from the program, it didn't increase as much as we hoped. But we are learning, and there are several possible ways forward. Earning something is certainly better than earning nothing, and if we hadn't visited we wouldn't have known to create the monthly reunion meetings, or had the idea of incorporating last year's graduates into this year's collectives.

Most importantly, I got a glimpse of the change that is really hard to measure: the light in a mother's eyes. The mothers who graduated in 2017 are different women than those who first enrolled in October 2016. Those mothers were quiet, reserved, and uncertain. A year and a half later, they possess a new inner light that truly shines. They have learned confidence, and they have experienced their own strength and capacity.

So, does our project model still a work in progress? Undoubtedly.

But has our work thus far made a difference? Yes. It absolutely has.

Thank you all for donating so generously in 2017. We are currently in need of several new monthly donors to support our growing project costs. If you are able to and would like to pledge any amount per month to Priyam Global, your money will be well-spent. Thank you!

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The sun is setting in Chennai, and the moon rises over rainbow-painted buildings. Palm trees sway in a breeze that still smells like the afternoon rain, and the air is full of the sounds of car horns, street dogs, and voices.

Today, another home visit is coming to an end.

"What are your hopes for this program?"

Every mother is asked to answer this question at the end of her application interview for our program. Each mother is different. Some have finished secondary school and others have only completed 5th grade. They live in different homes, have different tastes, and show different personalities. They talk about what they love about their children, what they fear and who they go to, if there is anyone, for support.

But they are all living in poverty (less than $2 per person per day), and they all share the same questions and dream the same dreams. 

"I want to gain practical knowledge about what my son needs."

"I would like to know what children with autism need, so I can work with my son and help him improve."

"I want to get more training and counseling about children with disabilities, so I can help and teach other mothers who are having a child with a disability."

"I want to know more about my child's disability."

"I hope I can have more social interaction with other mothers because of this program."

"I hope in this program I can interact with other women in the same situation as me."

"I want to learn more about ADHD so I can understand how to help my daughter."

In January, these women will meet together for the first time. They will get to know each other, share their struggles and successes, and learn together. As they complete our unique program curriculum (you can read the details in the document attached to this report), they will also begin learning marketable skills such as jewelry making, tailoring, and beautician services.

Thank you for believing in this program and investing financially in Priyam Global. I don't know if there is anything better than giving people what they want most, and what they are willing to work for: education, knowledge, and skills. 

Feel free to read our 2018-2019 program timeline for a deeper understanding of how our program works and how each piece fits together.

Gratefully yours,

The Priyam Team

• Program Timeline: 2018-2019 (DOCX)