The beginning of this millennium saw the growth in awareness and support for children and adults with disabilities across the world. In India however, the bulk of services and support provided is limited to the big cities.
In such adverse conditions in 1995, Neeta Deolalkar gave birth to a daughter who was severely affected by Cerebral Palsy. The commerce graduate who was pursuing Chartered Accountancy, realized that her daughter needed. additional support and therapy for movement and speech before she turned one. She went to Mumbai every day for two years in search of a perfect Neuro Developmental Therapist for her daughter. In 1998, Neeta underwent training with a consultant physiotherapist for following home-based therapy. Every day till 2005, Neeta's routine involved traveling to Mumbai and following up therapy session along with practice at home. Regular therapies teamed with long and stressful journey to Mumbai, slow progress in Shreya's growth led to a sense of depression and hopelessness in Neeta. Just like any other mother with a child. severely disabled, she looked at life as futile and saw nothing but a bleak future. Neeta decided to pursue the Vipassana course which turned out to be the highlight of her life; it changed her attitude towards managing stress and despair. She continued to do a course in yoga teachers' training program and chose to do a project on 'How Yoga Helps in Minimizing or Overcoming Stress of Parents of Children with Cerebral Palsy'. With a more positive outlook towards disability and life, in 2004 Neeta enrolled Shreya for Neuro Developmental Therapy for two years in Mumbai, which again had slow progress.
This led Neeta to introspect on her routine and life so far. She realized that the most part of Shreya's and her own life so far was entangled in therapies, following up on therapies, and finding new therapies, when children outside were enjoying their childhood. On talking to other similar parents, she saw that this was the story of every child and family with disability. An image was formed in her mind of a centre in Thane where children with disabilities and caregivers can have a stress-free environment, which helps them enjoy each other and their existence. With this in mind, Neeta took the lead in contacting people, organizing meetings with parents and professionals providing child care, and initiating discussions with dignitaries for the need of such a centre in Thane and in 2006, she started Swayam for children affected by Cerebral Palsy.
Neeta has ensured that she is constantly updated on understanding the possible stress- related issues of other parents and has equipped herself with the necessary information to deal with them. In 2005, Neeta enrolled for a certificate course on Rational Emotive Behavior Therapy in IPH. In 2008, she started the Masters in Social Work (Disabilities Studies) at Tata Institute of Social Sciences. The two years' course at TISS not only led Neeta to work towards understanding how to help children with severe disabilities and their caregivers, but she also learnt how to deal with the multiple stressors while managing home, the centre, and her own education.
Since 2005, SWAYAM's reach has expanded. Neeta has maintained quality service to children and transparency in working, but most importantly it has given children with disabilities a platform to retain their childhood. Neeta's dreams will no doubt be difficult to realize in a short period of time, but she is confident that the seeds she has sown will surely yield a fertile crop in the future; Swayam will reach out to more children in need and provide them with holistic services and a joyful experience. In her own words, "Swayam is an attempt to undo the wrongs done on children by nature, by letting them play, laugh and learn!"
Children…..Are the blessings from God! They are loving and selfless. Every child is entitled to a free-spirited, and innocent childhood; but there are a few amongst us who are deprived of this. They are unaware of the little joys of life like the happiness of boundless playing and a care-free childhood. Sadly, every fourth child in 1000 children has to face nature’s anomaly which could at best be described as a distortion in the natural scheme of things. This form of nature’s fury is called “Paralysis of brain which means Cerebral Palsy”. Accepting the harsh reality of this disability, a brave movement was started in July 2005. In a year, in 2006, some like-minded people committed to social cause founded an organization “Swayam”…… meaning “on your own”. The organization started growing fast extending assurance to parents and assistance and training to the disabled children. Soon, workshops on helping children cope with the disability, training parents and creating awareness about Cerebral Palsy became a regular affair with Swayam. The main aim of Swayam was not only to provide all the required therapies to a child with Cerebral Palsy under one roof, but also empower them to overcome the handicap and live a life with positive attitude. Bringing happiness to the lives of such children and their parents is the mission of Swayam! The movement which started with providing just one primary therapy to a child with Cerebral Palsy, now gives series of advanced therapies, thus working actively towards the rehabilitation of such children.