A Parent’s Journey: Resilience, Love, and Learnings in the IDD Community

Featuring: Dana Hooper, LSA’s Executive Director, and Madhu Ranganathan, Mother to LSA Resident, Sitara.

Hadiyah: Dana Hooper has been an executive director of Life Service Alternatives for the past 16 years, but his journey started many years ago when his son Brent was diagnosed with an intellectual disability. Over the years, he has become involved in many areas of IDD — he became a leader in our community working with the government and nonprofits such as Branch Services… where he is currently a board member… Lighthouse for the blind and visually impaired where he was a former board member… and the State Department of Developmental Services in San Andreas Regional Center where he was also a past board president and also where his son, Brent is a client in supportive living. It has led him to his leadership role at LSA — where he can make a difference every day in the lives of the individuals that LSA serves. I want to thank you very much for being here Dana. We’re excited to hear from you.

Dana: Thanks Hadiyah. I’m really glad to be here. But probably more importantly, I wanted to thank Madhu for joining us tonight. Thank you Madhu. It’s my pleasure to introduce you all to Madhu Ranganathan. Madhu is a devoted mother of three — including her daughter Sitara, who resides at our LSA home. She is the author of ‘The Child Who Never Knew a Lifetime of Love and Learnings and Resilience,’ a heartfelt book celebrating her daughter’s journey and honoring this special needs community… dedicated mothers, grandmothers, and the invaluable support from the very able community. Professionally, she brings over 25 years of financial leadership. Madhu serves as the President Chief Financial Officer and leader of Corporate Development, where she has been a key pointer since 2018.

Can you share your background, and your family specifically, the role of Satarah’s grandmother as she grew up?

Madhu: Sure, it’s a great place to start. I was born and raised in Chennai, the southern part of India. I came to the United States when I was about 22 years — I’ve been here almost 40 years. I pursued further studies here, as you mentioned, and I have a long career in finance. In my book, ‘The Child Who Never Knew a Lifetime of Love, Learnings and Resilience,’ I speak about a special needs daughter who is now 36 years and lives in one the LSA homes in San Jose.. about the role of her paternal grandmother. My daughter’s journey would be incomplete without speaking about her grandma, who supported her for almost 28 years. Sitara’s condition throughout her life was dominated by medical trauma and complications. I speak about her grandma as ‘Patti’ — it’s a dialect, in chapter 10 of the book. And this is not just about grandma’s care. I speak about a grandma who is truly uneducated and yet at the core, she provided unconventional, unconditional, and unbiased support. To the readers of the book, I’d like to convey a message that all special needs individuals can benefit from a combination of medical, therapeutic, and administrative care. Just one example, when the doctor said that Sitara, as a baby, would be unable to eat orally. It was grandma’s persistent, unconventional approach that eventually led Sitara to be able to eat orally. And needless to say, Sitara and her family remained very blessed and grateful for grandma’s role.

Satarah transitioned from her family home, into an LSA home — What was the hardest part of this transition? And how did you overcome those obstacles?

Madhu: It’s a great question Dana, thank you. It was a very hard part, and for that very reason, I spoke to it in Chapter 18 of the book. I called it, ‘Emotions, Explorations, and the Ultimate Letting Go.’ As the special needs child becomes an adult, it’s an incredibly difficult situation to be faced with. As ‘letting go,’ can be an emotional, physical, and spiritual experience. Will I outlive my child or will my child outlive me? As I mentioned, Sitara lives in San Jose, in one of LSA’s homes, under the amazing care of LSA staff — it is very much ‘at home.’ And let me also add, that this remains a very personal choice between each family. Now the hardest part was getting my mindset convinced that placing a child in a home is a required step in the parenting of a special needs child. As much as any and all support we offer to the child. In our case, my husband — he was there much earlier than I was. So the mindset was the hardest part… because when the mindset is there, we all become reaction-oriented. We get engaged in the search process, in interviews, in visits. When that mindset is not there, the advancing age of the parents and special needs adults can make it extremely challenging to provide quality care. From my personal experience, that I mentioned in the book — I hope it resonates with thousands of mothers and fathers — even if the mindset was not there for me, I decided to explore. Sitara’s home today (away from home), is less than 10 miles from the home that she grew up in. I literally globe charted, and explored outside of the United States for a home. Each exploration effort brought me closer to the mindset that it is extremely important to find a home for Sitara’s future. Adopt the mindset of letting go… develop an exploration process — whatever works for them, that suits each family. And really invest in all of the efforts to find a home. We did, and thanks to LSA.. you know my husband serves today on the Board of Directors of LSA… I truly wish every parent on this call that they do find a home, away from home for their child.

In your book, you describe ‘5 lessons learned.’ Could you go through a couple of those lessons?

Dana: The one that resonated with me the most was “explore, explore, explore.”

Madhu: Absolutely. So I call it Madhu’s 10. I have been very fortunate to pursue a career, as well as have a strong family. So it’s a combination of all of that. I call it “the powerful and integrated continuous learnings.” A few of those — inner strength. I think every special needs parent knows about inner strength. I talk about what does “hard” even mean in life when you have gone through a journey like we have done. The unknowns, the suddenness, anticipating, and preparing… As I said, Sitara’s journey is one of intense medical trauma. I talk about ‘mental zones.’ One time, our special needs child is perhaps having a tantrum or is ill and then you have to take a work call or have an able sibling that you have to tend to. I say that as a parent of a special needs child, our equipoise is so much more important as we deal with anxiety and the challenges of our special needs child. Caution, yet ability to take calculated risk… I think every special needs caretaker and parent can speak to this — acceptance and advocacy. Of course, perspective, perspective, perspective. So again, I talk about ‘Madhu’s 10,’ but it’s really a culmination of all the experiences we’ve had.

So obviously, this is a journey you went on with Ranga and others — what were some of the challenges that you faced?

Madhu: Yah so Ranga and I have been married for 38 years and going strong. That 38 years, perhaps not a surprise, was not an easy and straight path — no marriage is. But when you interject a journey like Sitara’s, one can only imagine. I will say that at every turn, we were there together. Sometimes not perfectly aligned but we were there together. As I mentioned, in the process of even finding a home the mindset Ranga was there much before I was and much stronger than I was… so I kind of joined him in that part of the journey. Sitara’s medical journey was like none other. Ranga and I took turns at every moment and today I am grateful that we still stand tall, after what seems like 10 life journeys squeezed into one. In my book, I speak to the concept of ‘AnD.’ In chapter four, the title of the chapter is, ‘and a very strong AnD.’ Both Ranga and I saw life as an AnD. Sitara was always at the core, being our first child and just the journey she has had. Yet an aligned view on life being an ‘AnD,’ allowed us both to pursue long-standing careers. We are blessed with two boys — young men now. Ranga is a 10-year-old marathon runner — he does LSA’s running programs. My point is that the ‘AnD,’ allowed us to experience life, knowing fully well that all of that gave us the fuel to serve Sitara. We are both very aligned with the special needs ecosystem of doctors, hospitals, caretakers… we will be allies with them. Our role was to make all of them do well. You will find us incredibly supportive and even when it is time to be critical, we’ve always made the effort to remain very constructive. I would say the ‘AnD’ and being together aligned with our journey. I think Dana played a very very big role to where we are today, and to where Sitara is today.

Can you talk a little bit about ‘trying again for a sibling,’ and what Adash has taught you about being a sibling to Sitara?

Madhu: It’s a great question — maybe my favorite question. The topic of siblings with special needs will remain my most favorite topic. So Adash is our oldest son and Kyash is our third child and youngest son. Now the literal meaning of ‘Adash’ in the Indian language is ‘idea.’ He has been the ideal son for us, especially in reference to our daughter. In my book, chapter 11 I write about Sitara’s first sibling — true to his name, the ideal Adash. He was born 6 years after Sitara and with little to no exaggeration, Adash’s growth was generously interspersed with the challenges and the hospital care of his sister. Spending weekends in the surgery wards of hospitals was a common place for him. Her challenges became the art of the possible for Adash who receives full credit for whatever sense of humor Sitara has and she is also less rigid in his company. And the most important thing I would say is for Sitara and other special needs children to develop trust in someone — can be very hard. I would say Sitara trusts Adash. As a mother, seeing Adash being the sole sibling often would tame my soul many times and I would say the universe would ever be so kind… I really want to have another sibling for Sitara… calm if strategic family planning. And then there was Kyash — he’s our Gen Z who I gave birth to when I was 40. So today Sitara is blessed with two wonderful brothers and Adash is married and his wife, Puja is a sister and sibling as well. Just all around a win for Sitara. I’ll say one last thing, so in my book Kyash Gen Z, we asked him to write his own chapter about his sister. He calls his sister ‘Akka,’ another Tamil dialect for the word ‘sister.’ It’s a beautiful chapter. My favorite sentence is where he says, “If Akka can live a life with such tenacity, the least we as a family can do for her in return is to support her. No matter the severity of her condition without fail, Akka always gets back up.” The chapter on siblings is dedicated to all the siblings in the special needs community.

Dana:

What inspired you to write the book?

Madhu: Yah so Dana, that’s the multi-million dollar question, and I would say in your home when we had the LSA event where I stuck my neck out and I said ‘here’s our journey and I would love to write a book,’ and that was a few years ago… so that was really a catalyst and I’m going to call your home as the best vibe I got to stay on this commitment. So Siatara’s journey continued and our lives evolved very dynamically with millions of precious moments and scores of high volatility screeching halt moments. We just felt plain old fortunate and blessed that we’re alive today. And me at 60-years-old and Sitara at 36-years-old… especially giving the fragility of life these days. At the same time, our journey we felt is not probably none of a kind. It is a journey that many special needs families go through. So there could be a chronicle with real-life incidents and characters and pictures to honor the special needs community. Could there be a playbook or a manual of real life events that can give hope to many families with or without special needs. I still needed time to write and as you mentioned, I have continued to pursue a very demanding career and yet turning 60 — which I did in May and the managing view of how fragile life can be — it really came upon me that to celebrate Sitara, to celebrate in the ecosystem, to celebrate the families — I have to finish the book. And big thanks to my family for their support. I’m sure all the readers, I hope they would agree, you know Sitara is the child who never knew how effective and influential she has been by bestowing upon us a lifetime of love, learnings, and resilience — that journey needed to be chronicled.

One of my favorite chapters is, ‘Facing and Fighting the System.’ And you talk about these different areas of advocacy and it’s really something that every parent should read before they go through this whole journey. Maybe if you could share some of the lessons learned, in terms of advocacy?

Madhu: Absolutely. I say in my book on page 64, if you’re a special needs mother in the early part of the child’s journey we hope this knowledge in the book will fuel and guide. We sit here alongside my family with a treasure chest of knowledge and experience and that is what we wanted to share. If I am who I am today, whether or not my child was born in the recent past or 30 years ago, I think given my personality, drive, our family history and support we would do everything we did. Someone very famous said we can connect the dots looking backwards, we can’t really connect the dots in the future. But if we were to pull the future forward I would have done all the things I have done to date and the support we’ve received from LSA, particularly during the pandemic, was just absolutely amazing. I would say Sitara is truly blessed at every turn — she received the best of care, the best of experts and support. And if that is her karma, I believe that would continue even to today. In terms of facing and fighting the system and the need to build communities — all of that stays true today… more modern, more connected, post-pandemic world. The connectedness may make building of the communities easier than what my family and myself went through. I do speak in my book several kind words and very sincerely meant, and recognition to Sitara’s doctors, academic medical institutions and caregivers… and having patients and families recognize caregivers’ contributions and as I said earlier, having a more constructive attitude… ally attitude… I think it’s just so important. And today’s very stressed health care and other administrative environments.

Dana: have to say on behalf of LSA, we love and continue to love you and your family joining our family. That always felt special… you give tributes to a lot of different groups…

Who do you think would benefit the most from the book?

Madhu: So I pay tribute to the special needs ecosystem and very deservingly so as I said doctors I. The medical institutions, caregivers, fathers, mothers, siblings… and I offer to so many who have intersected in our lives as angels and karma yogis and I also pay tribute to Sitara as my BFF, my best friend forever — all of this has spread through 20 chapters of my book. I do speak of mothers and women — that’s chapter 14 — a tribute to all of them… being a woman, Siatara being a woman. I say Mother’s are unstoppable. Special needs mothers are forces of love, learnings, and resilience themselves. Now who do we hope the book will reach? I would like the book to reach every family in this world, every professional supporting the special needs community, every doctor, every nurse who’s applauded in my book, in every country. At a minimum I would like to get a language translation of the book into maybe Spanish and two dialects in India… in a country of 1.4 billion people. There’s a chapter in the book calling, ‘Standing Ovation,’ and this is about an entire high school community that stood up to cheer Sitara reviving a high school diploma in 1997, when she was part of the special needs program at Saratoga High School. I would love for that chapter at least to be a required reading in all schools to inspire the able students how well they should support and love the special needs community, given that many schools are in sort of inclusive mode. I’d love for this book to reach far and wide.

Dana: You’re a big dreamer and I love it.

You talk a lot about your struggles leading up to and through ‘letting go’ — when did you know that was the right decision? When did you know it really worked?

Madhu: My mindset took a while so as I explored every step,, brought me closer to the modest that yes we need to find a home for Sitara for her future. It took a few years and I will say that exploration is something that anybody like me, who can’t make a decision on this, should continue to pursue. When we walked into the LSA home at Cambrian in San Jose, I speak for my husband as well, we knew at that point that we wanted to make sure that Sitara could find a home there. We remember talking to Sitara about, ‘here’s an opportunity where you can go.’ And her response was instantaneous. I really want to recall Susan, our wonderful manager. We met her at Cambrian home and she said that LSA is looking to build relationships with families first and of course the clients and the residents. All of that really aligned with Ranga and myself, as to what we were looking for and what that would mean. Every month, and every year has proven that Sitara also sees her home as her home. The pandemic really took this to another level. For the first time, when we couldn’t take care of her and she contracted Covid, she was taken care of in this home — with the amazing LSA staff and perhaps the ultimate ‘letting go,’ really happened then. Truly we haven’t looked back.

Is there something I should’ve asked you about or some aspect of the book that you think is really important to share with our audience tonight?

Madhu: The book is heartfelt emotions and I have been unvarnished about the emotional side in my book. Some of the readers to date have said they were teary eyed and well with emotions and I hope that’s emotions of relatability and hope and inspiration. I also hope that the book will convey that emotions are not just okay, but they are the fuel of passion, action, and experiences. And I think for every reader of Sitara’s journey, will strengthen the deep rooted values of empathy, care, and gratitude. I remain very grateful and will ask for any and all support to LSA and the audience here to continue to spread the word about the book.

Q&A Session

When you talked about facing and fighting the system — this was important for you to put in the book… what about for those families that feel like they don’t even know where to start when it comes to advocacy and it comes to community, maybe because of isolation or maybe their son or daughter, brother or sister, is stigmatized — where would somebody start when it comes to advocacy, both in the system and within the community at large?

Madhu: Facing and fighting the system is what special needs families can attest to that every day. It is continuous and never ending. The hope is that the book could be a manual, playbook that families can use on a continuous basis. I also have chapter 16, titled ‘The Community.’ The details of the community could be different from geography to geography and location to location. I added this chapter to really speak to the early part of the special needs journey or the mid or later — knowing what communities are out there and if they are there… engaging in that community in whichever way possible. I think that’s going to add knowledge, emotional support for the child and for the families. When you talk about stigmatization, I really accentuate the siblings aspect. The siblings, I call them ‘touch bearers of the future.’ These are able siblings… they know their special needs siblings really well but since they’re able, they can do so much more and God bless our sons, they have been touch bearers to dates I would say read the chapter about facing and fighting the system, the chapter about community and the chapters about the strength of siblings.

Dana: I think what’s key is finding those resources and getting support. People who have been through it, have a lot to offer. I have found that back in the day, at Saratoga High where Brent went — his special ed teacher was just an amazing resource. Both practical and important — inspirational, encouraging that exploration, support groups, parents helping parents… regional center has some resources. You better be an advocate going in. It’s not just going to automatically drop into your lap. And of course it’s one of the reasons why we do what we do — including offering Topics and Trends because you know it’s a tough challenge. We can bring facts and insights to various topics… find those speakers that have great stuff to share… we feel like we are helping this community grow together.

What would your one uplifting message be to parents, who are raising a child with developmental disabilities?

Madhu: Chapter 3 of my book says discovery, shock, and the proverbial… I think as a parent of a child with special needs or disabilities the discovery, the shock, the proverbial — for some families can last a long time, for others it might not. If you focus on just giving one message, the message would be acceptance, then advocacy and then the future. I think there is a lot that’s into this word acceptance as I use that perhaps likely it’s not as everyone knows but I do think that acceptance is important. Acceptance does not mean we do not place every minute of effort to the condition of the child or the young adult and the universe is kind. I don’t think Sitara would be here today at 36 years old. When the doctors told us she was barely a few months old, that they just didn’t even know about her future and what that would entail. When I look back, it was acceptance and advocacy, and then everything else that we kind of put in there… try if you can always to be constructive.

Hadiyah: I heard you say, always have hope — have hope that the future, as long as you’re still living and you’re still breathing, there is hope. If you sit around in sadness, then that’s not going to be constructive or progressive for the situation that you’re in. So that loaded word of acceptance came in — tell us more about that, Dana.

Dana: It starts with you as a parent accepting this child, accepting their differences, accepting them for what they are, and who they are, and then I think you can build from there. You can build Hope, you can aspire to move forward and make the best of the situation, but for me, it wasn’t just about my son, generalized to life accepting people for who they are.. and frankly moving away from judgments, and it was always tough because over the years. My son‘s siblings — they’re the ones that had a hard time. They’re the ones that get ridiculed for having a brother like that and they’re the ones that had to learn how to accept it and fight. Never underestimate how tough it can be for a sibling and how much the parents expect the siblings to step up, particularly as they get older in life.

Madhu: I say in the book — when Adash was younger his famous quote to his friends was “I will not be friends with you if you make fun of my sister.” he was bold enough to say that. The other thing I was going to add was that in the corporate world, as you mentioned Hadiyah, you will hear cliché sayings that hope is not a strategy, but in our world hope is definitely part of the strategy so I’m glad you mentioned that.

Hadiyah: You are both similarly advocating for your children today. You guys are not front lines as far as day-to-day services, meaning that they’re not living in your house with you every day now, but you still advocate for them in a whole new way. Dana, you are on the task force with DDS and Madhu, your husband Ranga is on the board the housing provider for your daughter.

Can you talk a little bit about that shift — when they transition as an adult and how your support has transitioned on a systemic level? Where are the battles that you’re fighting now for all children? What does that look like? How has it changed your relationship with your son or with your daughter?

Dana: For me, I felt pretty good about where Brent was and the plans and all of the things that have been put in place so looking back it became pretty obvious that there were a lot of people who didn’t have the resources, didn’t have the understanding of the landscape and didn’t have anybody in their court advocating for them so that’s when I kind of made that transition that it’s not about me it’s not about my son and it’s about all of those people out there like my son who could use another advocate. So that’s what prompted me to jump into LSA. Not serving my son, having nothing to do with my son, but a place where I thought I could make a difference. You could be on the sidelines or you could be in the game. I was on the shark board. I felt like I was on the sidelines and it was time to get in the game. That’s why I came to LSA, to be in the game.

Madhu: Dana’s wealth of experience here is incredible. I would say for me personally, for the longest time I was spending time only advocating for Sitara. Just given her medical complexities, it was one thing after another, so I always found myself advocating for her. Either in the school system or hospitals, and doctors and the same for Ranga as well. I did join the board and I was there for about five years at the Pacific Artisam Center for Education. That was my first exploration to be part of a nonprofit where I thought it could open windows to find a home for our daughter and I really enjoyed that experience. Coming back to giving back, I think where we are today as a family, where we have been in the last several years… it’s an incredible opportunity to give back. We have been delighted that Ranga is on the board of LSA. He’s now retired after a 40 year tenure in engineering, but he’s able to bring his professional experience, his passion around running and fitness and most importantly being a parent of a resident — our daughter. If you ask him, I’m sure he’d say the same thing. We are in a great zone in our lives where it is about giving back and less about advocating for our daughter, but more about giving back to the whole ecosystem in whichever way we can.

Hadiyah: The dynamic in the household is something that we don’t talk about much because we are in service to those who have a loved one with ID or an individual with ID. A few times we’ve referenced siblings throughout this conversation…

Can we talk just for a moment about all in which your family has done when it comes to LSA. I think it’s been an understatement in that chapter in the book and I would like to hear a little bit more about that relationship that Ranga has with Sitara and how that’s made a difference. And then, Dana, of course I know that you coparent with your children — I’d love to hear your version of your story as well.

Madhu: The chapter that is dedicated to parents… initially I came to that chapter from a different angle. In general, women tend to bear the cost of childcare, whether it’s special needs or not. This is pretty much a global phenomenon, so I really want to dedicate a chapter to the father and highlight the role that Ranga has played from birth to now. One of the things I speak about is from the very early days, we were both very young parents, just imagine a 23 year old woman and a man in his 20s… our first child is 2 months old — being told she’s blind and she’s got all this. I speak about how Ranga was never embarrassed to call Sitara his child and to speak about her condition and same thing for me. I do use the word manual playbook in a very sincere way, and if there’s any father out there who is even remotely concerned about having a child with special needs, I hope he would read this and be motivated. The roots come from accepting your child for what the universe has given, but not stopping at all and what you can do to further not just your child but the entire community.

Dana: In my case, Brent‘s mother and I were no longer together after Brent got to be in high school. What I found is that we might not have been able to agree on hardly anything, but we’ve always been able to partner with respect to Brent. I think we made a pretty good team. The toughest thing was always bringing the siblings along, and it was particularly hard for Brent’s younger twin siblings. They are star athletes, and Brent was on the bench — kind of like the waterboy. When you two get everybody in the family working together, it is really powerful. You can accomplish a lot. Brent was incredibly intuitive and very thoughtful and very loving and social. People would underestimate him and sometimes that would lead to frustration on his part because they’re treating him in a way that wasn’t very respectful. For me, I learned all these life lessons — Don’t sell anybody short, don’t judge the book by its cover, take the time to get to know someone. My message to everyone is you take the first step to be inclusive and the rest or follow.

What sort of ecosystem needs to be developed in any kind of country to provide the best support for kids?

Madhu: I do hope the book will answer your question. We speak to the community, we speak to facing and fighting the system, we speak to advocacy. I’d love to chat with you and others over the course of time, off-line. But I do think it can be applicable to any geography — The fundamental building blocks around the system, the advocacy, as well as all of that could be great to chat about off-line.

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