An Unplanned Journey: A Gift of Compassion

My first encounter with PYSSUM happened via social media. Paramahansa Yogananda Society for Special Unfolding and Moulding (PYSSUM) is an organization set up by Naval Pant in Lucknow working with children with special needs. As Dr. Sanjeev Arora, writes in the Preface:

The PYSSUM approach [is one] in which every child is special and gets a lot of love and affection to grow, and in which teachers strive to bring the best in every child with empathetic listening, kindness, and flexibility . . .

Having been the primary caregiver to my mother who had Alzheimer’s Disease for over 11 years, my association and empathy with caregivers is the reason I began to read this book under review.

An Unplanned Journey is a labour of care and love. It is a collection of real-life stories of children and adults with intellectual and developmental disabilities. The first three stories, ‘A Gift from God’s “Hall of Angels,”’ ‘An Unplanned Journey,’ and ‘The Winning Ways of “Could be a Vegetable,’ speak of the author’s personal experiences as a parent of a child with developmental challenges. In ‘A Gift from God’s “Hall of Angels,”’ one hears a loving parent trying to explain things to his son – “My friends tease me that I am different and very slow. I mess up the games I play with them. I want to know why, if I am different and very slow, did God give me to you?” The innocent questions of a little child facing issues in the world hits one in the face and remind one of the insensitivity of most people in their dealings. Written in a conversational tone, the story tugs at the heartstrings. The child’s innocent questions that lead on to several others which the parents try to answer reveal the ways in which parents have to find ways and means to negotiate such situations and questions.

Insensitivity is something that anyone who is different and does not conform has to face on a regular basis. That words and metaphors, while resulting in effective communication, could also be hurtful is something that the stories speak of. Imagine a parent being told that the child “could be a vegetable”.

Like most parents of children with special needs, we were catastrophizing, imagining the worst possible outcomes possible. Our mental state may be described as swinging wildly on the see-saw of total denial and unreasonable hope.

The difficulty of accessing medical care, of the helplessness of parents who want the best for their children abut are unable to get them in spite of all resources available is held out to one clearly. Pant does not complain, he just puts out facts for all to read and become aware of.

The learned doctor, unconcerned with our hopes and delicate feelings, answered crudely: “I don’t know. Your son could be a vegetable all his life.”

‘The Winning Ways of “Could be a Vegetable,’ speaks of the genesis of Paramahansa Yogananda Society for Special Unfolding and Moulding (PYSSUM), an organization that Pant set up –

This major undertaking was partly motivated by the need to help my son and others like him, and also because I was first and foremost a teacher interested in children’s education from my youth.

Pant’s wife, Professor Ranu Uniyal has been an integral part of the organization working to create a happy, friendly space so that children with special needs find a conducive place to nurture, grow and learn.

The stories in the book are not just about Pant’s son but about several other children as well. The names of the children have been changed to respect their privacy but these are stories that people need to know. The story of little Manas who began to speak well, who wanted to learn new things, in “constructive play, drawing and crafts”. As Pant writes, “Manas’s story is a constant reminder to us to include love, with awareness, as an effective tool in the special needs’ curriculum.” There is Tanu who came to PYSSUM when she was a seven year old, who needed love and care and a little firmness – “The class teacher did not allow her to receive ny help until there was a genuine effort, however little, from her side.”  Within three months the child shows signs of coming out of her shell, of reacting, something that everyone at the school celebrated with great joy.

Each of the stories speak of children who were part of PYSSUM at some point of time or other. Narrated with great love, care and sensitivity, the stories reveal how small gestures, a hug, a pat, a warm touch, a smile, bring about so much change in the lives of so many young ones. It is not just the children but the lives of their parents and other family member that are affected as well. An Unplanned Journey is a much-needed work that the reviewer hopes will be read by many, not just be those who have children with special needs but by all. Sensitization is important and the volume is a step in that direction.

An Unplanned Journey, Stories of Empathy from the Frontiers of Intellectual and Developmental Disabilities

by Naval Pant

Paramahansa Yogananda Society for Special Unfolding and Moulding (PYSSUM), Lucknow, 2023.

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