Lessons in perseverance from the disabled

With the International Day of People with Disability only a couple of days away, Shazman Shariff talks to some mothers about the challenges of bringing up a disabled child

When Padmini Vasant first held her premature daughter, Nivedita, weighing just 1.2 kg, she could not give up the impending fear that the tiny frail body in her hands may not survive for long. However, she was proven wrong when each day the baby gradually started showing signs of improvement.

For Padmini, the revelation that her daughter was spastic was not unexpected.  “I could sense she was retarded, but was not sure in what way,” says the mother who works as a coordinator at an NGO.

For both husband and wife, the real challenge started when Nivedita turned two. “I could see her lagging behind in certain areas, her movement was not picking up, and her speech and perambulation were impaired …” she recalls what the earliest indication of her child’s predicament was. But the couple took up the challenge of raring this special child with optimism and courage. To focus fully on their special responsibility, they decided not to have any more kids.

“My husband has been very encouraging throughout,” says Padmini emphasising how they made sure life stayed the same with the inclusion of a special child. “Nothing changed for us. We socialised; We went for outings with our daughter. We got strange stares, but we ignored them all,” says Vasant Kumar, her husband who believes that the hope for a better tomorrow kept them going.

It is unfair to deny any child, who is faced with mental or physical challenges, the right to see the world beyond the four walls of the house. Vani Rajendra, mother of a 22-year old autistic daughter, feels glad that she and her husband, who have been amazingly supportive, provided much exposure to their child. “We have taken her to posh restaurants, on long drives and everywhere else possible… we never cared for what other people thought,” says the spirited mother who works as a financial advisor.

She and her husband, who unfortunately passed away two years ago, welcomed Preksha in their lives with sheer love and fondness. Describing her reaction after having discovered that her child had a speech problem, she says, “We thought God chose us to nurture a special child, who came like an angel. We had so much of love to give that we enjoyed every moment we spent with her.”

The nature of Preksha’s retardation is such that people cannot make out that there is something wrong with her, unless they start a conversation. “My daughter is blessed with good looks and is physically fit. Speech was once a problem but with regular therapies, it has improved a lot.” The mother feels proud to add that Preksha who works at a software firm after completing her basic education, also has a photographic memory.
Nivedita and Preksha are lucky to have parents who have nurtured and developed their abilities while making efforts to alleviate their short comings.

“As a child, Nivedita played the keyboard quite well and showed a keen interest in music.  Considering her other problems in mobility, she was however, able to make swift finger movements on the instrument,” says Padmini.  The mother recalls how she used to tie her daughter to the chair to prevent her from falling down as she was not able to balance herself.  Observing her natural flair for music, particularly in playing the piano, they enrolled her for music classes, which greatly helped the child in bringing forth her inner talent.

Now a cheerful young girl of 21, Nivedita leaves one spell bound when she lets her fingers run on the piano keys.  A student of Christ College, pursuing her Bachelors in Computer Application, she likes playing symphonies of great musicians on her piano, a gift from her parents.

For Neena Vashisth, a high school teacher, taking care of a child diagnosed with Asperger’s Syndrome has been an experience punctuated with loads of patience, courage and determination. Although the child appeared normal, his immense hyperactivity and predisposition to run into danger alarmed the mother. “Unlike other kids who would show some concern for self-protection like, running away from fire, covering their ears upon hearing loud noises. My child would venture into dangerous situations without taking resultant consequences into account,” she recollects her son’s childhood.

At the age of five when her son’s speech was still limited to monosyllables, she sensed that the child needed special parenting. After heading from one doctor to another, she was told that her only son was a spectrum kid. This term is used to describe a combination of disorders such as, anxiety disorder, OCD and high functioning autism.
“Treatment, rehabilitation, medical help… getting access to all these was difficult,” she tells us how she faced challenges with the demanding task of parenting and getting treatment for her son, Aditiya. After her husband passed away, she has been taking care of the child single handedly.

A young man of 26, Aditiya, could pass off as any other normal guy as he is physically fit with excellent learning ability. However, Neena states, “He is loud and repetitive and tends to get aggressive, something which prevents him from carrying out a normal conversation.  Mingling with new people and moving about in a social area is a major problem for him.”

She does not mince words when she is asked about how well mannered people are towards those with any kind of impairment. “Insensitive” she replies.

“I have often lashed out at people verbally, and dealing with certain people with a pinch of unpleasant gesture has become my alternative nature,” she candidly tells us how painful it is for a mother to hear people using insensitive and derogatory terms for differently-abled people.

As a mother who has seen her child endure trying times at school, she feels that kids faced with these challenges must be enrolled at a special school. “Sending them to a regular school has an negative impact on their self-confidence as they are made to compete with fully abled kids. When they fail to perform, the child and the parents both feel pressurised,” she opines.

Although her son is employed at a computer firm and is a good worker, she fears he may lose his job as his impairment hampers his ability to deal with others in a normal manner. “In the name of integration, companies do hire some special people but expect them to conduct themselves like normal individuals. When this does not happen they are shown the door,” she says suggesting that in her view, social service offered by corporate houses is merely lip service.

“Now, I want him to get married as I will not be there for him forever,” she says adding she would like to move to a gated community to secure peace of mind.

Although times are changing, people can be hurtful with regard to their gestures and words. As Sangita Jain, a house wife puts it, “there are still many situations where I find people being apprehensive about letting their normal children hangout with our special ones. Sometimes, there are references made to ‘bad parenting’ or ‘bad habits’ that may have caused this to happen to our child. Or, of course, even to my ‘bad karma.’”

To secure their child’s future is a major concern with parents of special children. Sangita says one of the biggest challenges she faces while raising her son with Fragile x syndrome is “to enable him to have a safe and secure future.” It was a mixed feeling of fear and apprehension about the future that had first engulfed her when she came to know about her son’s syndrome.

The onus of parenting a special child is immense and requires certain skills and aptitude.  Kavita Sharma, a special educator, who heads a training centre for individuals with Autism Spectrum Disorders, feels parents are much more aware today.  In her view, “technology has brought about an understanding of the condition of the child, the kind of intervention that is available … This has brought a new ray of hope for these special kids.”

She also faces the challenge of raising her teenage son, Ujjwal, who is afflicted with Asperger’s Syndrome. “Explaining to others why a child is behaving in a certain way because of the disorder he or she is suffering from could be hard on the parents.”  Kavita advises parents to see things differently and give more importance to their child’s education, training and rehabilitation.  “One should…equip oneself with the knowledge available and implement it in a consistent and intense manner, never give up,” she sums up with words of encouragement.