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How the Naga child with special needs suffers



A volunteer assisting a differently abled child at the rally held on International Day of Persons with Disabilities, December 3, 2011. More than 200 persons with disability marched from Christian Higher Secondary School to Dimapur Town Hall. Volunteers from different NGOs and churches along with parents and guardians assisted them throughout the rally.  (Morung File Photo)
 
Morung Express Feature
For a long time, children with special needs (CWSN) have been considered a liability for many parents. Many were being told and many believed that such children were a result of some past ‘misdeeds’ by parents or forefathers. There are also several other myths in the Naga society associated to children with special needs. This narrow mentality has often resulted in a lot of parents associating guilt with parenting a child of such nature.
Overcoming such stereotypes that have long been existent can be an uphill battle, but over the years many Naga parents of CWSN have strived to move past the community-created obstacle and have voiced their concern for the inclusion of their children in the society. Many parents have also raised their concern about the lack of medical facilities and educational institutions for children with special needs in Nagaland.
Having a child with special needs can be a huge responsible to the family and parents especially in a place like Nagaland, where proper diagnosis, medical services and special educational services are not available. Atula has a brother by the name Tali who has Down syndrome. She said that for years, her ‘ignorant family’ ran from one doctor to the other seeking help with no diagnosis and no positive results as such. “With no improvement in his condition, my parents started visiting prayers centers and prayer warriors,” Atula stated. She said “We were told that he was the result of our forefathers’ misgivings, we were also told that an evil spirit has taken control of his body”.
Only years later, when they finally took Tali for medical test outside Nagaland, they realized that he had Down syndrome. Due to unavailability of diagnostic centers in Nagaland at that time (and even now) Tali never got diagnosed at the initial stage and as a result of which no intervention programmes, no proper enrichment therapies and tutoring could be imparted to him.
“If only proper medical and educational institutions would have been prevalent in Nagaland at that time, my brother could have been leading a different life today,” Atula laments. Nothing much has improved in Nagaland with regards to dealing with children with special needs.  
Nagaland still lacks diagnostic centers, specialists, special institutions etc. Atula asserted that the government should take up initiatives and set up special institutions and medical centers for children with special needs. That would benefit thousands of children as well as parents suffering and struggling in silence today.
Atula concluded with a note of regret saying that many adults with Down syndrome can live semi-independently, enjoy relationships, work, and contribute to their community provided they receive early intervention. However, many other children in Nagaland, who are also, like her brother, are being deprived of their normal lives. It is high time that individuals, organizations and the government start acting on their behalf.
Likewise, a mother of an autistic child shared her experience. Unlike many other children in Nagaland, Kathy was born and brought up in Bangalore. But the mother said that the Nagas are quite ignorant and so were they. They could not detect Kathy’s problem initially and till she was two, they were clueless as to what the problem was.
Only when Kathy started getting seizures, did they realize that something was not right and started taking her around, till a Neurologist confirmed that her developments were not normal.
She was then referred to some specialist where she was diagnosed with Autism. They started taking her through different routines and intervention programmes such as speech therapy, physiotherapy, vocational trainings, special education and counseling sessions for six years, till the time they were in Bangalore.
However, once they shifted to Nagaland, Kathy’s mother said that the most difficult problem they faced was accommodating Kathy in similar setting so she could continue with the required intervention programmes. As there was no facility in Nagaland, Kathy’s parents tried enrolling her in play schools and in normal schools, where she only faced discrimination and which did not help her at all. Her condition started deteriorating but the parents were helpless. They have finally enrolled her in St Mary’s school where there is the facility of resource room teaching.
Kathy’s mother said “Even if she does not get the required intervention programmes, she can still go and spend some time in the school with the other children and learn something, instead of just being at home”.
 “I know there are some programmes introduced by Sarva Shiksha Abhiyan for children with special needs where they give out aids and appliances, offer home-based education, resource room teaching and so on. Those efforts are appreciated but the need of the hour is not short term interventions but full fledged institutes and medical facilities for the overall development of the child, right from the initial stage,” the distraught mother says.
Kathy’s mother added that it is high time the Nagaland state government emphasize on CWSN and take initiatives for their welfare as done in other states. The Nagaland government should offer courses related to children with special needs and encourage youngsters to take up such courses. The government can create employment opportunities for youngsters taking up such courses by introducing resource-room teaching in all the government-run schools or set up special schools thereby motivating youngsters to take up courses related to CWSN.
Kathy’s mother concluded by saying that the task of learning to deal with CWSN is always challenging for the parents as well as the others but watching these children overcome obstacles that other children don't have to deal with is very rewarding. Children with special needs often have a courage that is unmatched by others and its time the citizens of Nagaland as well as the Government start working more for the welfare of these children and help them lead a life worth living.


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