Urmila’s world: children with cerebral palsy

Nitin Cerebral Palsy Society at Nayabasti (about 5km from Mitrapark, Chabahil) has since 2014 been providing a homely environment for special-needs children. It is an initiative of Urmila Maharjan in memory of her son Nitin, who suffered from severe cerebral palsy and died young at 14. Maharjan, now 55, had worked as a special education teacher for 25 years at ‘Mastiska Pakshyaghat Swawalamban Samuha’ during which time she also trained at the Greenmead Special School London. 

Cerebral palsy is a collective name for a number of permanent movement disorders caused by brain damage in early childhood. The Nitin CP Society opened with seven children but is now providing care for 16 of them, who suffer either from cerebral palsy or mild autism. Since its establishment, the school has been a second home to 36 children, and the 16 children currently there are between four and 19. “They remind me of my son. I would like to be devoted to their care for the rest of my life,” says Maharjan. 

 

Tough but rewarding

It’s not easy to take care of children affected by cerebral palsy. They are usually stubborn and angry, and some families consider them a nuisance. But they have to be treated with more affection than children with other mental disabilities. It is particularly challenging taking care of teenage girls during their monthly periods. 

The school has a checklist to keep record of each child’s behavior and ailments. When a new child is admitted, a six-month plan is drafted to cater to his or her needs. The goal is to make children able to complete basic tasks on their own and maximize their physical and mental well-being. Those above 14 are also involved in various vocabulary-building activities. The school also provides them with transport services and two meals a day. 

Maharjan says she does not want these children to be a burden on their parents and a hindrance to their career paths. Taking care of their children throughout the day, she adds, frees up time for parents to focus on their work or to attend to other matters.      

She gives the example of a seven-year-old who has shown remarkable improvement. He was three when he was admitted to the school and could not even crawl. But now he walks independently, interacts with people, solves jigsaw puzzles, plays computer games, and is even making progress interpreting numbers. 

 

Fund crunch

Lack of adequate resources means the organization can afford only four staff members, each working for a nominal salary. They are responsible for the entirety of the children’s activities—from feeding them to taking care of their hygiene and sanitation. The school also has a professional physiotherapist. 

The school collects a token fee from the parents, which they give willingly. (The highest amount it gets is Rs 7,000 a month a child.) The parents of three children do not pay, given their poor financial status. As the amount the school raises every month varies, it is difficult to plan ahead. Maharjan says many big organizations and renowned personalities have made promises to visit the school and contribute financially, but little of the promise has materialized thus far. 

The school pays a monthly rent of Rs 35,000 and Rs 45,000 for transport services. It is struggling to meet these expenses and may have to shut down if it continues to fail to secure steady income. 

Nitin Cerebral Palsy Society is not a huge organization providing service to hundreds of clients. It is a small but noble initiative—one that requires tremendous dedication. Surely, endeavors like these deserve our support.

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If you would like to donate, contact the society at [email protected] or call them at +977 9861098189