It has been little long but amazing journey for Me since graduated from an institute run by ‘Wayanad Muslim Orphanage’, Kerala; went to follow my ambition to be an IAS Officer; graduated from ‘Azim Premji University’, Bangalore, one of premier institute in the country for developmental studies with full scholarship; joined ‘Kudumbashree – National Resource Organisation’, a technical agency working across the country under the aegis of the ‘Ministry of Rural Development, Government of India’ to ensure livelihood support for grassroot communities; and then finally leaving the highly paid job to explore something very close to my heart as well as to settle down at Mysore to take care of my baby who is facing multiple developmental disabilities…
Things started rolling when it’s identified that an active platform is necessary for the families settled in Mysore to avail treatment from ‘All India Institute for Speech and Hearing’ (AIISH), one of best of its kind in this sector, and other private institutions around for their children who are facing major developmental disabilities/disorders mainly Autism Spectrum Disorder, Cerebral Palsy, Developmental Delay, Intellectual Disability, Speech language Delay and Hearing Impairment. The families, majority of them are women and some of them with twin babies, settled here are from across the country especially from south India and a rough alarming estimate is that there are more than 250 families just from Kerala alone !!! About the duration of the stay in Mysore, there are families who have been here for long 7 years to there are families who are coming just for short term treatment for 2-3 months. To start with bringing people to a Forum a data collection drive was started under the banner of ‘Prathyasha’ (Parents’ Resource & Training Society) . Monthly awareness programme on various aspects of developmental disabilities and necessary treatments, and training of parents to speak and write Kannada language really kicked start the momentum in the field. First-ever ‘Play Tour’ and ‘Smile, Please’ (an opportunity to share every positive change of the child or any innovative child care method in the Watsup group) were helpful to increase self-esteem of the parents’ community. As a development practitioner my enthusiasm was gradually going out of control when parents came forward to join spoken English courses, PSC Coaching and Special Education Courses. Parents were really trying to reinvent their lost aspirations and hidden skills in these initiatives. Meanwhile an attempt to avail a research grant to do a scientific research on prevalence of these kinds of deseases/disorders went in vain. The high demand for government approved special education courses resulted in initiating discussions with various agencies – but a never possible dream for parents to complete such courses in distance mode along with ensuring treatment and care for their children!!!
‘Butterflies Playhome’ was an inevitable initiative of this time and situation. This is a small rented space, fully equipped for child care and education with parents-focus strategy, where parents can come together and do whatever therapies suggested by professionals in various institutions. Since its starting in first week of June, 2018 there are 48 children got enrolled filling all slots and this has been already transformed to a vibrant community space. Nevertheless to say the dream has no limit and expectations of the community is growing in rocket speed day by day. So I feel this is the right time to take the challenge of developing full fledged ‘Prathyasha Community Centre’ a dream that has been kept in side to be started after 2 years. The earlier we can start the sooner a parent will go to her bed cherished to be a parent of a ‘special child’ and start to dream going back home in near future.
Our programmes and activities are conceptualised under a soon to be registered TRUST with long term purpose of education, capacitation and advocacy in the domain of developmental disabilities/disorders. Your contributions will definitely give wings to our following dreams:
- To take a property on lease in proximity to AIISH and arrange necessary infrastructure, materials and equipments for a full-fledged community centre (Such an already functioning building is identified)
- Position needy physiotherapists, speech therapists, psychiatrists, psychologists, counsellor, occupation therapist, community social worker and special educators
- Explore more specific focused interventions for children with various disabilities/disorders (toilet behaviour, dressing, food management, regulating the Fits/epilepsy etc.)
- To set up a day care for siblings of ‘special children’ so parents can spend more time for various treatments and caring
- Development capacity building and livelihoods development programmes for parents to sustain their efforts and ensure meaningful opportunities
- To scale up the concept of ‘Butterflies Playhome’ to other parts of the country as parents’-driven rehabilitation and special care institution supported by local community and institutions.
- To develop an innovative scientific ‘Entitlement Tracking System’ to ensure access to various government schemes and its timely delivery by special children and their families.
- To conduct research study on prevalence of various disabilities/disorders, reasons behind them and possible precautionary as well as rehabilitative steps
- To produce IEC resource materials for education and main streaming of children with various disabilities/disorders
- To develop an innovative Android App for early identification of various disabilities/disorders, child care and treatments, and mass level education process using latest communication tools.
As the parents of our Forum always say, “we are the people who had run away to life, there is always a return from this journey”. Our efforts are to make this journey more worthy and to return to be cherished as parents of a ‘ Very Special Child’ …
My strength is these parents, a team of youth and handful professionals who are highly passionate to be the face of this initiative, and of course the yet be flown children.
As a final word, no any person in this Forum like to be treated through the eyes of sentiments/sympathy but as a part of the social response that you can also be partner in any way – be it in any kind, being the voice of this Forum, sharing your skills and professional expertise, volunteering or just being a co-traveler….
Thank You much…
With Love we are sharing the snapshot of our first ever ‘Play Tour‘
Some important references regarding the prevalence of various developmental disabilities/disorders mentioned in this note:
- According to various findings global prevalence of ASD is one in 160 newborns (Autism spectrum disorders & other developmental disorders, From raising awareness to building capacity, WHO Meeting Paper, September, 2013) and estimate from India is one in 250 newborn and approximately there are 4 million affected (Autistic Spectrum Disorders – A Guide for Paediatricians in India, Merry Barua and Tamara C Daley, Published by National Centre for Autism. Action for Autism, New Delhi, 2008
- Worldwide prevalence of CP ranges from 1.5 to 4 per 1000 live births and in India it’s estimated at around 3 cases per 1000 live births. (Study on the Clinical Profile of Patients with Cerebral Palsy, Written by Nabanita Das, Gayatri Bezboruah, Indira Das, IOSR Journal of Dental and Medical Sciences (IOSR-JDMS).Volume 15, Issue 7 Ver. V (July. 2016), PP 54-58
- As estimated by WHO, about 5 percent of the world children under 14 years of age have some type of moderate to severe disabilities. (Developmental Delay: Timely Identification and Assessment, Written by Jennifer K Poon, Angela C Larosa And G Shashidhar Pai, Division of Genetics and Developmental Behavioural Paediatrics, Medical University of South Carolina)
- According to a study conducted in India, the prevalence of speech and language delay was found to be 27% in children less than three years of age. (Prevalence and Risk Factors of Speech and Language Delay in Children Less Than Three Years of Age, by Nivedita Mondal, B.Vishnu Bhat, Nishad Plakkal, Mahalakshmy Thulasingam, Payyadakkath Ajayan, and D.Rachel Poorna, 2016)