Saturday, October 10, 2009

The sound of silence

For autism, hearing loss and other problems that beset children, the Ephphatha Speech and Hearing Centre at Kochi offers solutions

By Shevlin Sebastian

Illustration: anatomy of an ear

At the Ephphatha Speech and Hearing Centre, at Palarivattom, teacher Sruthi Krishna is showing a picture of an elephant, a cat and a dog to four-year-old Renuka (name changed). Her whole body is shaking uncontrollably, because she is suffering from cerebral palsy. The home nurse, Meena, has to hold her tightly.

Shruti says, “Point out the elephant to me.”

Renuka smiles, nods her head, even as her legs and hands continue to tremble. After several moments, Renuka reaches out and touches the picture of the elephant with her left wrist.

“Very good,” says Shruti. “Renuka understands everything, but she is unable to express what she has learnt.” Renuka’s father is a lawyer, while her mother is a doctor. So, it is Meena who brings Renuka to the centre every day so that she can learn words and images.

At the centre they deal with children who suffer from autism, Attention Deficit Hyperactivity Disorder (ADHD), Down’s Syndrome and hearing problems.

A hearing loss for children can take place at any time till the age of 12. A child can have a respiratory illness, mumps, or meningitis and that can affect the ears. Children who are born before the seventh month could also be affected. Hereditary factors also play a role

When a child is brought for a check-up tests are done to locate the damage: whether it is in the middle or inner ears. If there is a problem with the middle ears, medicines are given. However, if nerve damage has been identified, hearing aids are provided and there are intensive speech therapy sessions.

In the cases of children who have suffered permanent nerve damage, the only alternative is a cochlear implant. (This is a surgically implanted electronic device that stimulates functioning auditory nerves inside the cochlea.)

However, a cochlear implant surgery costs a whopping Rs 6 lakh. “It is beyond the reach of the middle class, let alone the poor,” says Thomas J. Poonolil, CEO of Ephphatha.

A year ago, Ramesh, a labourer realised that his one-and-a half-year-old son, Abhimanyu, had a severe hearing loss. He came to Ephphatha for help. When told about the cost, he sold his house, but got only Rs 4 lakh for it. “A few sponsors came forward and paid the remaining amount,” says Thomas.

On May last year the operation was done at Sunrise Hospital, Kochi. “It was a success,” says Thomas. “Abhimanyu is learning to speak now.”

Unlike Abhimanyu who was afflicted at birth, Shailaja suffered from a profound hearing loss when she contracted meningitis at the age of eight.

“A happy, outgoing child, overnight she withdrew socially,” says chief speech pathologist Manju Thomas. Her father sold his house and again with the help of sponsors a cochlear implant was done. “It is only now after a year of speech therapy that she has started speaking again,” says Manju.

At Ephphatha they have discovered an illness which is happening often to children. There is a delay in being expressive. “Since the family is small, and when both parents go to work, children spend most of the time watching TV,” says Manju. They are unable to talk back to the TV and there is nobody around to communicate to them. Hence, there is no speech stimulation for the children.

“It is urgently necessary that a person, like a grandparent, should always be there to interact with the child,” says Manju. However, the good news is that it is curable. After a few months of speech therapy they become normal.

Meanwhile, parents go through a sense of devastation when they realise that there is something wrong with their child. What does not help is the lack of acceptance by society.

“When there is a problem of sight you can wear spectacles, and nobody says anything,” says Thomas. “But as soon as a child wears a hearing impaired device, the attitude of people is that there is something wrong with the infant.”

So, at Ephphatha there are counseling sessions for parents also. “We explain to parents that the situation is not hopeless,” says Thomas. “We motivate them to think in a positive manner.”

And so every day, mothers come with their children to the centre, some wearing hearing aids while some unable to hear or walk, each hoping their child will get cured. But no matter how positive you are supposed to be, for an onlooker it is a painful sight to see such innocent souls being blighted so early in life by a handicap.

(Some names have been changed)


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