Shashank Maharjan, 18, has intellectual disability -- commonly known as mental retardation, a generalized disorder that hinders one’s cognitive ability and causes the disabled to learn and develop more slowly than a normal child.[break]
In Patan CBR (Community Based Rehabilitation Organization) at Chakupat, Lalitpur, where Shashank has been a student since its inception in 1995, there are many other kids who seem to be wandering in their own unfathomable worlds.
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The humming, wails, screams, chatters and occasional laughter of children gush out of the Patan CBR building as the students are in full action during their daycare and school program. The non-profit organization working for people with disabilities operates through the combined efforts of disabled people themselves, their families and communities, and the appropriate health, education, vocational and social services.
Days at the center start at 10 am and the children arrive slowly accompanied by their guardians, or by the CBR van, and some, very few, come walking on their own.
A room on the bottom floor of the building is designated for children with severe disabilities who cannot move around, or need constant guidance. Of about 10 children there, some lie on the floor staring at the ceiling, some sit up in support chairs and some move around with blank expressions on their faces.
Sumitra Rai, who has a movement disorder of cerebral palsy, seems to be unwell as she won’t stop crying. Her aunt, who is here for the day, rocks Sumitra in her lap and tries to feed her, whispering soft words in her ears. But she is inconsolable and continues to weep without producing any sound.
“Sometimes you feel desperate when you can’t figure out what Sumitra and kids like her are going through as they can’t speak and express themselves,” says Shrijana KC, one of the rehabilitation facilitators at the center. After trying to calm Sumitra for a while, her aunt decides to take her back home.
Upstairs is a classroom. While some kids in their muddled uniform try to copy the figures of “A, B, C.” in their notebooks, most are busy throwing toys on the floor or complaining to the teacher, “Sir… he pinched me .. Sir, she hit me..”
On the top floor, there are students who are equally noisy and silent.
Rama Shrestha beams with a smile, absently and slowly. It’s the way she does almost everything – slowly, absently, and always smiling. She has Down Syndrome, a congenital disorder that affects approximately one in 800 to 1,000 babies. The presence of that one extra chromosome in their cells hinders their cognitive ability and physical growth to some extent and that’s how they become different or “special” from others like us.
“Rama, have you put on more weight?” Shrijana asks, and Rama simply beams again.
“Many people with Down Syndrome tend to be overweight, as they just sit...” Shrijana breaks off and runs to the last bench shouting in her loud voice, “Don’t do that.” Shyam Babu Mishra, 55, one of the oldest students there had apparently pinched little Lucky, a visually impaired child. As Lucky sobs, resting his head in his arm, Shrijana rebuffs Shyam Babu who backs down to his own seat.
“Don’t take it otherwise. But they don’t know when they are hurting other people. When you’re dealing with so many of these kids all at once, you have to be careful all the time,” she explains, caressing Lucky on the back who is calming down now. “At times, you even have to be harsh or they can hurt others and themselves,” adds Shrijana.
In the hallway, Chandra Dhakhwa, one of the founding members of Patan CBR, is trying to make Shashank let go of the slipper.
“Shashank, come on, put that down.” Her voice is soft and loving and Shashank finally gives in after a few grunts.
Having worked for such a long time with children with disability, she says time builds a very strong bond and familiarity that helps in communicating more easily. Often, parents who visit the center for the first time, well up while sharing their problems, mostly because there is no known cure for most of the disabilities that their children suffer from. But there is always hope – a light at the end of the dark tunnel.
“Shashank used to be very hyper sometimes and would hit people. But he has toned down considerably,” Chandra says and adds, “The key to dealing with these kids is to treat them with love and care. Somehow, they understand that language.”
As they get up to leave, Samshu Limbu, who also has Down Syndrome, rushes in with a bright smile. Unlike Rama, this 13-year-old, smiles like she is the happiest person in the world and hugs like a long lost friend.
In the next room, where they give vocational trainings to the students, Mukesh Maharjan is busy making candles with his friends. Deep in concentration, he cuts into the wax with a knife and pulls out a candle from the cast. From the way he does all this, it is hard to believe he has Down Syndrome or any intellectual disability.
Pushpa Joshi, who is in charge of this class, shares, “Mukesh has really set an example for so many kids here. He’s so proficient now that he can teach others to make these candles and often helps us manage other kids around here.”
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When Mukesh Maharjan was three, he was admitted to Lok Smriti, a mainstream school at Gwarko. But because of Down Syndrome, he could not keep up with the advance level of study from grade one onward, and his teachers recommended that he be taken to a special school. So at the age of eight, he was pulled out of the mainstream school.
Since then, he has attended some special schools for children with disabilities, and is now studying at CBR. He now knows how to read and write, and can make beautiful candles and loves to play chess.
His mother, Purna Maya Maharjan, says that when CBR was conducting one of their home visits and fieldwork, she felt she should let Mukesh join them as he was not faring well in his special school.
“I feel Mukesh has improved a lot now. He loves going to school and won’t miss a single day,” she says, smiling.
Now that Mukesh knows some basic maths and can communicate well enough, his teachers at CBR have focused on trying to make him economically independent through the vocational trainings, such as making candles. His parents seem to agree that this is best for him.
Mukesh actively participates in most of the school programs – be it dancing or painting, and is appreciated by all his teachers and volunteers at CBR. His younger sister, Roshni Maharjan, attends most of the program and says she feels really proud of her big brother.
“Often, when we go out with him, we’re amazed to see how many people come to talk to him and that he’s just so loved by all,” Roshni says.
She also adds enthusiastically that though Mukesh has Down Syndrome, and it sometimes causes him to forget things, he never seems to forget a face.
“Maybe I’m just habituated to seeing my brother the way he is, but I find him normal; as normal as can be.”
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