Day: October 9, 2022

The Challenge

Every child is different. Every parent is different. Every family situation is different. Thus, the experiences of the parent and child depend on the parent, child, and the situation. One type of therapy or one educational approach does not meet every child’s needs. Further, the possible paths for the child are not clear. We cannot assume a straight-line progression from kindergarten to high school and beyond in the same time frame as other children.

In my experience, the biggest challenge in raising a neurodivergent child is being in the “don’t know what I don’t know” state. For example, I had no idea that movement was of vital importance to Ananth’s development. The need for sustained, consistent systematic movement for Ananth is a piece of knowledge that we didn’t know that we didn’t know! Fortunately, we included movement through walk and through activities of daily living and addressed this need to some extent.

When Dr. Masgutova, creator of the Masgutova Neurosensorimotor Reflex Integration (MNRI) program suggested dance for Ananth, we moved from a don’t know what I don’t know to a state where we were aware of the possibility of using dance as a tool for development. Once we were aware of what needed to be done, we were able to start working on it even when we didn’t know how to do it. The decision to explore dance was one of the decisions with the greatest impact on Ananth.

Thus, a key challenge for parents is to recognize that they don’t know much of what they need to know for parenting a neurodivergent child. It is important to accept being in the “don’t know what I don’t know” state, keep learning, and then take steps to keep moving forward as they learn more about what to do and how.

The Solution

The key question is: How can parents get the right information to create the right experiences as their child grows? Networks such as Special Saathi can play an important role by streamlining access to information sources and by using storytelling to bring more detailed explanations of what experienced parents have tried, what worked, and why it worked.

I believe that parents have the power to change their neurodivergent child’s situation and outcomes because they care for and understand their child, advocate for their needs, support them in their learning journey, and help them find their place in a neurotypical world. Thus, my interest is in solutions that change the environment for parents and enable them to act with ease and confidence.

While neurodivergent children have specific challenges that need to be addressed, many challenges arise because the environment is not designed for them. Viewing a neurodivergent child in terms of fixing their challenges often makes one feel powerless. Because the child is differently abled, even extraordinary efforts to change the child through therapies and educational approaches will not succeed until the parent and the system change. A three-pronged approach that emphasizes development of skills for parenting neurodivergent children, changing the environments so the child can thrive, and then addressing the child’s specific challenges is more empowering for the parent and for the child.

Discovering our Path Forward

The decision to homeschool our son was one of our most important decisions. Homeschooling planted the seeds for LIFESMART. The language of remediation was much stronger when we started our journey over 20 years ago. The implicit assumption of therapies and school programs was that deficits should be identified and addressed to reduce the gap between the child’s development and that of neurotypical peers.

In this environment, it was homeschooling that kept me playing and learning with Ananth in a way that worked for him. While we have benefited from many therapies and educational approaches, homeschooling kept us focused on where we were at any given time and taking small steps forward.

Homeschooling is seen as an alternative to school from kindergarten to high school. But homeschooling is a way of life for us. Our home will always be a homeschool where learning happens every day! Ananth is learning with many others today. He is a part of organizations. But home continues to the base for learning daily!

Homeschooling also made it much easier to discover and develop Ananth’s interests. In 2012, he discovered Bharatanatyam and wanted to learn it. Within a month of starting, he declared that he wanted to do his arangetram (the first solo performance of a Bharatanatyam dancer after years of training). Given his extensive motor challenges, we were wondering how to make this happen. But he was determined. Homeschooling made it possible to do Bharatanatyam classes during the week when his guru had more time. Ananth was diligent about practicing Bharatanatyam in the morning every day. Homeschooling meant that we were not in a rush, and he could practice dance daily!

Homeschooling played an important role in shaping family interactions. We went for long walks daily, learned together, and did household chores together. Fortunately, two families in our neighborhood homeschooled. Some of the children came to our house and played with Ananth a few times a week. We went to stores, parks, and other places. As Ananth grew older, music and dance expanded opportunities for interactions with community members.

My Journey as a Change Agent

We all have capacity to act and to change our lives and that of others. But this capacity does not develop overnight. This capacity is developed through life experiences throughout our lives. One of the key experiences that has developed my power is doing my B. Tech in IIT Delhi. When I joined in 1980, engineering was not a common path for women. There were four women in our class of over 200 students! I came from a conservative family and my school experiences also did not prepare me to be in the IIT environment. I learned engineering. But I also developed resilience! Persisting in an environment where I had a few friends but did not have a sense of belonging has shaped my life.

Since that time, many other experiences have helped me develop my capacity to work with others to bring about systemic change. One experience that is particularly relevant to how I view my role as a change agent is my work with The PhD Project. Because of my experiences in engineering school, I was drawn to The PhD Project, an organization in the US that seeks to diversify the workforce by diversifying business school faculty. Given my interest, Bernie Milano, the president of The PhD Project and The KPMG Foundation (now retired), encouraged me to study The PhD Project model. I was fortunate to observe and learn from a successful model. The PhD Project published my book, Growing Systems of Success, based on this work.

The Six Cs (Connections, Conversations, Clarity, Choice, Competence, and Coordination) that are now part of LIFESMART were developed through my study of The PhD Project model. The right connections and conversations bring clarity and help us make the right choices. We can prioritize and learn the right skills at the right time (competence), and coordinate with others to accomplish our goals.

Chance favors those who invest in their Six Cs!

The Six Cs move you out of the “don’t know what I don’t know” state to a state where you have a clearer idea of what to do and how to do it.

The Six Cs are an important part of LIFESMART. Conversations with therapists, parents, and educators gave me clarity. I had more confidence that we were learning the right things daily! Connections to the right people made it possible to develop Ananth’s interests. Connections and conversations also gave me many ideas to evolve interactions with a neurodivergent child. Finally, connections made meaningful community engagement possible for Ananth.

The Power of Education

My life experiences have led me to believe in the power of education. I was able to succeed in the highly competitive Joint Entrance Exam (JEE) for IIT (Indian Institute of Technology) because of parental support. I vividly remember receiving packets of materials from Agarwal’s Coaching. I did not have a peer network for preparing for the JEE. My father would often work with me on lessons and problems. Thus, I know from personal experience that parents can change the game for those who cannot access the system as easily as others. I also believe that education is of vital importance to every child. My vision is to empower parents to become active participants in their child’s education since systems are often not designed to meet the educational needs of neurodivergent individuals.

Ananth had several challenges. For example, eye-tracking and other problems meant he had difficulty reading. But homeschooling provided us a way to keep moving forward. We did not think in terms of what Ananth was doing or not doing in relation to peers. It was much easier to see where he was at any given point and keep moving forward daily. We have not fallen into the trap of low expectations. Rather, we have tried to discover what is doable and worth doing at every stage and slowly moved forward.

Today, Ananth is a Bharatanatyam dancer. He plays the piano and has completed level 6 of the exams conducted by Trinity College, London. He has completed his diploma in Hospital Documentation and Medical Records. He has been learning coding and web development from HashHackCode. He is also learning theater arts from RASA – Ramana Sunritya Aalaya. A Journey to Bharat through Natya that began in 2012 continues as he continues exploring and learning more about Indian culture through the arts and through daily experiences!

Playing it Forward

Finally, I see playing it forward as a key tool for me and for other parents. Playing it forward is a process of sharing our discoveries with others. I share daily in my LIFESMART groups. I share specific suggestions for parents to try. I explain why those suggestions are important, how they worked for us, and how they might work for others. This process has led to the development of our LIFESMART 100-Day Lab (http://www.lifesmartfamilies.com/100daylab.html). The lab shares 100 small steps that parents can take to develop their power as parents! We are now discussing one step each day in our LIFESMART groups.

I was excited to learn about the specialsaathi initiative because it reflects the elements that I see as the ones needed to bring about systemic change. It is encouraging to think that parents will not feel alone, lost, and confused because they will have access to a network of support. As I studied The PhD Project for many years, I wished that parents had a similar network. Specialsaathi has the potential to be that kind of network and I am looking forward to being a part of it.