Ten-year-old Ishu is impatiently pacing up and down the sitting room of his house with wobbly steps and a half smile on his face. He cannot maintain his balance very well and the excitement is making him even more nervous, causing him to run into furniture.
He runs his hand over his face, feels the sharp edge of his teeth and laughs to himself. No one knows what he is thinking. Except, to an extent, his mom.
“He can’t wait to get to school. He loves being with other children,” says homemaker Ritu Negi, 35, Ishan’s delicately-built smiling mom. She’s right. The moment the school bus comes around the corner and stops at the gate, Ishu’s eyes sparkle. Pushing the door open, he eagerly makes his way to the mini bus that will take him to Tapovan Government School for Special Children, Ganganagar.
Ishu is special. And not just because he shares his name with Isa Maseeh or Jesus Christ (he was born on Christmas Eve) or because he is one of India’s 3 per cent who are born mentally / physically challenged. Ishu is special because he is not capable of malice or hatred or even the survival instinct that makes people protect themselves from someone who is not willing to accept them the way they are.
There are very few others like him in this world and we, the not-so-special, need to respect that even if we cannot emulate it. Though by age Ishu is 10, he suffers from MR (mental retardation) and autism that brings his mental age down to a year and half. He cannot feed himself, clean himself, express his feelings, read a book or even understand a bedtime story. Yet, in many ways he is just like any other child because he loves Maggi, enjoys spicy chicken curry, likes having guests over, misses his grandparents when they are away and likes to fiddle with the television switch. He has not learnt to say Mummy yet but his dad is a happy man because only recently did Ishu call out to him with a ‘Papa’. “That’s the first word he has uttered and he understands it means father,” says a very proud Ritu.
Ground reality
According to statistics released by CRY (Child Relief and You) 3 per cent of India’s children are mentally / physically challenged. As many as 20 of every 1,000 rural children are mentally / physically challenged, compared with 16 out of every 1,000 urban children.
According to figures from the Union Ministry of Social Justice & Empowerment, out of this staggeringly large number, only one lakh children receive special education. Avenues for integrated learning where special kids interact with normal children their age are less.
Teachers at Tapovan, the school Ishu goes to, help him with speech exercises, hand co-ordination, physiotherapy, get him to practice sitting in one place since he is hyperactive and help him to colour using crayons. Ishu does not enjoy the colouring sessions that much since his teacher has to hold his hand to make him do it but he really likes seeing other children around.
Need for integrated education
Avenues for integrated learning — schools where special kids interact with normal kids their age – are limited and Ritu points out that often parents of normal children don’t want their children mixing with those suffering from MR or autism. Ritu recalls a time when she had put Ishu in integrated hobby classes at Dehradun’s Latika Vihar, many parents objected to having their children interact with special kids.
“They feared it was something contagious. Eventually, the principal of the school called a meeting and educated them about integrated education. Once they understood, there was no problem,” adds Ritu.
Special kids need to be with normal kids as they learn better and grasp faster by
example. And normal kids need to be with the special ones because integrated education sensitises and educates them about special needs. This is the only solution to a world that cruelly alienates a special child and parents because it cannot be bothered to understand them.
Acceptance is key
When her neighbour Pinky hugs Ishu or invites him to come for a game, it makes Ritu happy. It also gives her some time to finish her chores in the house or just read a long-pending book. “Life becomes so much easier for parents of special children if they find acceptance in society, from their families and friends. Otherwise, they end up being isolated since they cannot participate in social functions. They have to put the child first, all the time,” says Meera Ramchander, principal of Asha School for Special Children, Bangalore, a specialist in child development and psychology.
If families and friends pitch in and help, it can make a big difference. Sensitive neighbours can be a big support and all of us can make the world a better place by educating our own children about a special child.
Ishu and children like him possess a unique definition of fun. Ishu likes it if you sing to him, he likes playing with musical toys or those with blinking lights, and he likes going to the temple and folding his hands to do “jai”. He likes walking around the house and fiddling with new things he discovers. If his needs are met, he is more than willing to be lost in thoughts and complain little.
Flood of happiness
Children like Ishu are difficult to train, and it takes many years of love and patience, yet the rewards come. “If his requirements are met, he does not miss me,” says Ritu but when his father or his grandparents come back after a long absence, he is so overwhelmed with happiness to see them that she doubts her own word.
“God gives special children to special parents, who he knows can take care of them. When Ishu responds to what we say, when he is happy to see us, that’s enough for me as a mother. I love him for what he is. I never think of how it would have been if he had been born normal,” says Ritu. When she looks up at you and smiles, you know she means every word of what she says.
And in her brave and positive outlook, there is a lesson not just for other parents of special children but for all of us. Particularly for those who don’t want to accept the limitations of their children. Who are so driven by competition and ambition that they push their kids beyond their abilities and refuse to accept them for the beautiful little people they are.
Startling facts
3 per cent
of India’s children are mentally/ physically challenged.
5:4
is the ratio of mentally / physically challenged children in rural areas versus those in urban areas.
- COURTESY/CHILD RELIEF AND YOU
The science behind it
There are several reasons behind mental retardation like biomedical, social, behavioural, and educational. The biomedical factors for mental retardation are mainly the biological processes, or genetic disorders which the baby imbibes right from the mother’s womb.
However, it has been seen that often during the early years if the child is affected by any severe ailment like meningitis or pneumonia, there are high chances of the baby acquiring mental retardation. Apart from these, there are also social and ecological reasons which cause mental retardation.
In this regard, the environment nurturing the baby is extremely important. Some of the common causes are Down Syndrome, Foetal Alcohol Syndrome and Fragile X Syndrome. Mental retardation can be of many types. Autism is a kind of mental retardation, which is there in the baby since childhood. However, many practitioners believe that the environment of a child makes a big difference to the situation. Whatever the type of mental retardation, doctors advise parents to give their child a proper social life, love and affection besides access to rehabilitation and teaching centres.
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Five steps to acceptance
According to Meera Ravichander, specialist in child development and psychology, also principal of Asha School for Special Children, Bangalore, parents undergo many painful phases before they finally come to accept that their child is differentially abled.
Shock: The initial reaction is always shock. The older view was parents must have made some karmic mistake for which they are being punished. Thankfully it has changed over the last two decades as people are becoming more aware of the scientific reasons behind such births.
Denial: When parents first learnt the truth they go into denial. They visit various doctors, seek second and third opinions, visit faith healers etc.
Acknowledgement: Parents accept the truth and face the reality that their child is a special child.
Grief: Facing this reality brings immense grief. Support is required from families, society, siblings, friends etc to bring couples out of their grief and give them strength to accept reality.
Acceptance: Parents accept that their child is special and start working on what they can do to bring out the best in their child, despite his/her disabilities and limitations.
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