Deafblindness is defined as a condition in which the child has both vison and hearing impairment in varying degrees. Such child suffers difficulty in verbal communication, exchanging thoughts, taking personal care, managing daily needs all by himself as well as mobility.
Deafblind is a grave and irreversible disability, which compels paramount understanding and empathetic care. Yet, tragically, one can see no dedicated Government-run centres or facilities in India to tend to these special children and take them in life’s stream along with normal children. A deafblind child cannot get on board a regular school for normal children, nor may be enrolled in a school meant for the blind alone. For, besides visual disability, such a child hearing-impaired too. Schools are run for the deaf and dumb children also cannot facilitate a deafblind child, as such a child is blind too.
95% of what we learn comes through seeing and hearing. The deafblind child faces unique challenges in communicating, mobility and accessing information, making it the most isolated child.
Premature birth, rubella or German measles in pregnant women, lack of proper medical care at the time of birth, CHARGE syndrome (a group of 6 diseases), and Usher’s syndrome, are some of the major causes of Deaf blindness. Deaf blindness could occur at birth or be acquired later in life.
In addition, the surveyor also requires to be specially trained in both skill and art of carrying out such a census.
The Mathru School for Deafblind is run on “Free Boarding, Free Lodging and Free Training” basis. This initiative needs public attention, involvement, concern and of course, financial support for its success. The cost includes expenses incurred for identifying, visiting, travelling, communicating and spreading awareness and advocating. Training envelopes teaching life skills, building self-confidence, giving elementary education, developing vocation-based skills, and making such children grow into confident adulthood to enter the main stream of society.
Mathru has provided the required OAE machines to Narayana Nethralaya, the reputed eye hospital in Bangalore, with the financial support by Sense India. Sense India is collaborating with Mathru in identifying such needy children in Karnataka under its early intervention program. Mathru has identified over 80 deafblind children so far in Bangalore district alone for meeting their needs on centre-based and home-based criteria. The program aims to cover all other districts of Karnataka in the coming months.
We believe that given the right support, every disabled child can both live normally and participate in the community more fully. However, it is the quality of support that such child receives which makes its life succeed.
Dhanushree is a deafblind child who came to Mathru in 2012, when she was 5 years old. She is born into a poor family. When she joined Mathru, her health was bad, and she had no communication or mobility skill whatsoever. Always lying on the floor, she was a picture of frustration write large. Mathru identified her multiple issues and put her in a regular routine of training and drill to restore her health, hygiene, communication and elementary life skills. The patient and devoted efforts of our special educators transformed Dhanushree phenomenally, bringing smile and joy where despair and desolation had once ruled. Now Dhanushree can speak, although a little, walk independently, read and write Braille. Remarkable, she makes and serves tea, sweeps and mops, and does book-binding, among other chores. Her parents are joyful to see their daughter being busy and independently managing herself.
On the 18th of August 2014 Mathru School started a deaf-blind project in D.J Halli, in association with Sense International India. This centre has 20 deaf-blind children/children with multisensory disabilities (14 children are centre based and 06 children are home based). In this centre there are two special educators and one centre assistant are working with the children. This centre is functioning in a room which belongs to the Government school.
This is parent’s oriented programme. The educators are teaching skills like toilet-training, brushing, bathing, dressing, eating, combing hair, grooming, communication, personal hygiene, sensory training, safety skills, motor skills, basic orientation in mobility, social interaction, pre-academic, and behavioral skills like identifying the family members, greeting, expressing the needs, interacting with the strangers etc. will be taught through tactile sign language/ sign language by the special educators and trained teachers. Weekly once educators will also go for home visits (to facilitate those who are unable to come to the centre). Special educators have to maintain individual educational plan. Educators have to prepared individual time table for each child as per his/her disability and also IEP (Individual Education Plan).
In this centre most of the children are suffering from epilepsy. The Mathru Trust is provides, medicine, aids appliance and enriched nutritive drink.
In 2006 a little girl with low vision by the name of Nandini came to Mathru. She spent four years at the school learning Braille and growing and developing among her peers. During the summer of 2010, she contracted chicken pox. Unfortunately her family was located in a poorer, more rural area of India where medicine is not readily available, and as a result the high fever caused her to return to Mathru blind, deaf, and mute. In response to this event the Nandini Project was born.
Included in the Nandini Project are five smaller projects:
This project aims to teach students, like Nandini, with multisensory disabilities and give them the necessary independence to function in today’s world. There is no prescribed syllabus for these children because of the variation in disabilities from child to child. Teachers adjust the syllabi according to the nature of each child’s disability and the rate at which each child learns. The initial focus for children at this centre is teaching basic living and communication skills. In addition speech therapy, physiotherapy, and physical exercises are available for students who would benefit.