A Mother's Reflections: A Heartwarming Journey of Love, Unyielding Strength, and Championing Inclusivity

PREFACE

I have tried to capture the internal odyssey within the book, which gained significant momentum with the unfolding of life’s pivotal moments. Everything was going well until my second child arrived. Today, I feel as though my child had to teach me some important lessons in life that were essential for delving into intense existential inquiries that emerged within me at an early age. The inner child in me sought to ‘see’ God, leading to increasingly complex questions with no easy answers. The birth of my second child, a son with Down Syndrome, proved to be a shattering event for me, someone with a deep intellectual orientation of mind. This occurrence prompted numerous questions, not only challenging my own beliefs but also societal norms. The internal turmoil sparked unconventional thoughts that questioned conditioned perspectives on individuals, life, and the world at large.

This book encapsulates a wealth of diverse knowledge gleaned from the unique journey spurred by my son, Puneet. He presented me with intense moments of self-reflection, opportunities to apply my learnings to address the challenges, and a glimpse into the world of disabilities that often lingers at the periphery of our consciousness. It is different to see it from a distance than being in it. It feels as if each of the three sections of this book reflect my own development in life. These aspects of my personality were mutually reinforcing each other. I could become a nurturing mother because I could see follies in my thought process that created barriers in accepting my son with his disability. This insight was deepened as I understood how the mind functions, and that brought deep empathy within. It did not allow me to limit my concerns only for my child but many others who were living with such a condition, not because of their fault but because others were unfair to them due to biased perceptions, denying them basic human rights and growth opportunities.

Anything happening to a child is also happening to the mother. In the case of any disabling condition, one recognises that it is not a temporary phenomenon. Each aspect of one’s life is affected by it, and a mother’s heart cannot rest until she does everything possible to protect the child from adverse consequences and enrich her child’s life.

The vast experiences mentioned above sparked a triple revolution within me. I became a mother struggling with my own emotions, a mother and a psychologist who was fully immersed in exploring the world of my son with limited intellectual capacities, and an activist keenly aware of the social injustice instrumental in impoverishing the lives of many individuals with disabilities. Something needed to be done to deal with the unrest within me, arising from the threefold aspects of my experiences. I not only tried to do whatever could be done with my son and many other individuals in similar conditions, but I was also intensely engaged in exploring the nature of mind functions.

These experiences have culminated in my writings encompassing three realms—reflections on my role as a mother, insights as a psychologist navigating the impact of intellectual disability on development, and advocacy work as an activist fuelled by a profound awareness of social injustice.

The mother in me was guided by a search for existential questions, the psychologist in me was trying to apply knowledge of human development and psychology to nurture and maximise the growth processes of Puneet, and the activist in me was inspired by myriad real-life heroes, friends with disabilities, who were working incessantly to carve out a path for themselves, facing all kinds of impediments in living a full life. They were leading the disability movement in India that will perhaps change the living conditions of generations of people with diverse forms of disabilities.

I

An Emotional Odyssey: Navigating Life with a Child with Down Syndrome

In this section, through a sequence of experiences, the readers will delve into the emotional odyssey of a mother who discovers that her son has Down Syndrome just forty-eight hours after his birth. It vividly portrays an inward journey characterised by the tumultuous interplay of love, grief, and despair. These emotions lay bare the profound impact societal norms have on our perceptions and emotional responses. As the narrative unfolds, it invites readers to question their own interpretations and judgments, paving the way for a transformative exploration of self and others.

This part also examines the world we construct through our perceptions and judgment tendencies. In this exploration, we encounter a vast and diverse universe awaiting our discovery, offering opportunities to broaden our perspectives on life and self. The narrative underscores the potential for embracing and respecting the multitude of ways people navigate their existence.

Growing alongside my son Puneet, I gradually recognised the simplicity of my previous world view, steeped in uniformity and certainty, as if only a handful of valid ways defined life. Much like a black hole conceals its own realities, each individual carries a universe within, with unique ways of experiencing life and the cosmos. A chapter in this section also captures the revelations gleaned from closely observing his feelings, needs, and behaviours. It demystifies the perplexity often felt in the presence of a person with intellectual disabilities (ID), emphasising that the fundamental essence of humanity, with its shared feelings and aspirations, remains constant, regardless of individual personalities.

The narrative acknowledges the substantial challenges that the presence of a person with ID poses to families. The last chapter explores the amplified difficulties faced by family members due to the absence of knowledge, guidance, and support services. This journey aims to illuminate the human experiences shared across diverse universes and foster a deeper understanding of the intrinsic worth of each individual, regardless of their unique path in the world.

1

A MOTHER’S JOURNEY

Life is a vast canvas of pleasures and pain, hopes and despair, success and failure, dreams, and aspirations. It is full of wonders and mysteries. From the tiniest atom to large galaxies, everything works in perfect order. Life itself appears to be an enigma, though we live with confidence and certainty as if we know and can control it. The falsity of this notion strikes us when we face difficult situations. Life has its own dynamism and follows its usual course unless one finds oneself in entirely unknown terrain brought about by unexpected events. It can sometimes change the entire course of life. What initially started as a shocking event may open up a completely new dimension of experience. Life teaches much more by putting us through struggles and suffering, provided we do not succumb to them. I sometimes wonder if I could know life as closely if Puneet was not there in my life. It proved to be a turning point in my life in many ways.

Back in April 1976, I was to become the mother of my second child. I had a six-year-old daughter who was a delight to us—my husband, her grandparents, and me—in every way. Having just completed my PhD in Psychology, I decided to take a break in my career so that I could look after my baby well and enjoy his growing-up period. Everything was going well in life, and I felt blessed to have a caring husband and a delightful daughter. The time for delivery came, and I didn’t have the faintest apprehension about anything going wrong. We were overjoyed to have a son, but the joy was short-lived. Two days after his birth, the doctor told us that he had Down’s Syndrome and that such children do not fully develop in their intellectual ability. I was shocked and started looking for all the signs and symptoms to falsify the doctor’s diagnosis. The diagnosis was catastrophic, plunging me into denial and disbelief. Desperate to disprove the diagnosis, I scrutinised every aspect of my child.

I remained in a state of denial for days, though with an apprehension about what if the diagnosis was true. Soon began a period of intense grief. I could visualise how our life was going to be affected by it. It was the most severe blow for a person like me for whom intellect meant so much. Denial, however, could not bring me peace because the faintest possibility of the diagnosis being true was too horrifying. I went through the process of confirmations and reconfirmations, forcing myself to confront reality squarely within days of Puneet’s birth. I did not cry; it felt as if everything within me had dried up, and life was over in every conceivable way. Intense and unrelenting grief took over me, and sleep became a refuge. The reality was so frightening that I did not want to discuss it with anyone, including my husband, as it would have reminded me of the situation that I desperately wanted to forget. I lived with a strange feeling of derealisation and depersonalisation, part of a post-traumatic psychological condition.

My son, Puneet, is now 47 years old. He is a caring and responsible member of our family, spreading love and happiness with his zestful and endearing ways. Reflecting on his growth from childhood, I never imagined that he would grow up to be such a pleasant, mature, and wonderful person. Watching him grow has shattered various myths about intellectual disability, providing me with a rare opportunity to explore and understand emotional, personality, and cognitive aspects in someone with limited intellectual abilities.

Daily interactions with Puneet have sparked numerous interesting questions about the workings of the human mind. These questions presented a fascinating challenge to my quest for understanding the mind more deeply. It has great potential for psychological research, revealing deeper mysteries of the mental processes. While tempted to pursue this as a research area, my maternal instincts prevailed in shaping the direction of my life. Like any mother, I yearned for Puneet to have the best opportunities for a happy life, though the journey to secure them was far from easy. Challenges such as a lack of good educational opportunities and prevailing misconceptions in society became significant hurdles. It’s disheartening to see how societal misconceptions—whether based on caste, gender, or disability, can impoverish lives.

Persons with ID often face underestimation, hindering their access to essential opportunities like education, skill training, and employment. Under these circumstances, creating proper conditions for Puneet’s development meant taking matters into my own hands. I connected with like-minded parents embarking on a collective effort to find solutions for the lack of services in this field. It gave birth to Muskaan, an NGO in Delhi, run by parents and professionals, focused on securing the basic human rights of children and adults with ID.

Ironically, Puneet was born a month after I submitted my PhD thesis in Psychology, marking it as an intense period of intellectual engagement. Amidst despair, two conflicting thoughts were emerging in my mind. On one hand, there was an utter disappointment of having a child with an intellectual disability; on the other hand, the call for duty was emerging, reminding me of my responsibility as a mother to nurture Puneet’s growth so that he could actualize his fullest potential. While navigating conflicting emotions, I also realised that my grief was a kind of insult to his existence—a new life that had every right to enjoy this wonderful world and its beauty in his own ways.

A Mother’s Reflections: An Inward Journey

In the years since Puneet’s birth, I have been on an intensive inward journey, wherein life has been providing me with profound insights into myself, the human nature, and life in general. This transformative path, laden with diverse challenges, was anything but easy. The struggles, primarily internal, stirred me to the core.

Sometimes, I wonder how significant transformations can occur when we question ourselves, others, and the situations that life presents to us. A child who initially brought immense grief and despair into my life has now become the greatest blessing. His simple and innocent ways, purity of heart, capacity for love and cheer, freedom from egocentric persuasions, and zest for life are truly touching. I cherish a beautiful relationship with him, born out of total unconditional love and acceptance for both him and his condition. This journey has enabled me to experience the profound beauty of unconditional love, offering a unique and diverse understanding of life.

Was this transformation easy and quick? Absolutely not! It required years of churning before reaching the present state of mind. There were moments in early days when I wished he hadn’t survived, contemplating placing him in an institution to protect our lives. Strangely, these reactions came from someone who saw herself as a kind-hearted and sensitive person, who was deeply touched by other’s difficulties and sufferings. Despite these negative feelings, my care for my innocent child never wavered, although I occasionally unleashed my anger on him during his childhood, always followed by strong feelings of guilt.

Coping with the new realities of life presented a huge challenge. It meant questioning my beliefs, prejudiced notions, my intellectual snobbishness, and judgmental attitudes. However, my inclination to search for answers within myself led to introspection, self-analysis, and struggles with my own self. This proved to be revealing in terms of insights about my own self, highlighting unhealthy attitudes and egocentric ways of thinking at the root of my problems. I could clearly see a symbiotic connection that a mother shares with her children. Children are such a significant part of their parents that they become almost like an extension of them. Just as we feel pain, shame, anger, and frustration at any kind of damage to our image, the failures and pains of our children become our loss as well. Similarly, their achievements give us great pride and happiness. My introspective analysis revealed this to be an important source of my troubles and I realised the need for bringing objectivity in my approach. The fact is that children have to face their own difficulties, deprivations, and failures. We, as parents, can only support and encourage them in their journey.

Fulfilling our aspirations through children is not fair. Each of us is born with a script that unfolds as we grow up. Our own dispositions and circumstances create a certain field of action, defining our roles and duties. There is no guarantee that life’s outcomes will align with our expectations. When we choose to be parents, we have no way of influencing the kind of person our child will become. We cannot choose their abilities, constitution, or any other qualities. A child with a disability is the least we might expect. However, it is unfair for parents to place unrealistic expectations on their children. Parenting is about helping them grow and develop according to their abilities and dispositions, so that they become optimally functional and wholesome individuals. The key to our happiness should lie within us, and we should not blame our circumstances or others because they cannot always be conducive to our sense of well-being. A famous sloka from the Bhagavad Gita serves as an important reminder: ‘karmanyev adhikaraste, ma phaleshu kadachana [We can only perform actions to the best of our ability and understanding, but the results are not entirely in our hands].’

Self-images or notions about ourselves are at the root of our self-esteem, playing a vital role in creating a sense of well-being and self-confidence. Our happiness or unhappiness depends mostly on experiences that enhance our self-image or dent it.