Helping deaf children take baby steps towards sound: Sound Steps founder Shefali Shah, India’s only LSLS Professional

5th Sep 2015
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Some years ago, a child came into your world and changed it, bit by bit- with every chuckle, every strand of your hair they tugged at, every bite they nibbled off your hand, and every time they gave that endearing little yawn only to call it a night on your lap. Imagine how that perfect world would fall apart – when you discover that your child hasn’t been able to hear your bedtime stories and lullabies all these years?

Infants must be tested for hearing loss – which is the second most common birth defect after mental retardation – right after birth. In India, where six in every thousand have it, this set of tests is often bafflingly left out. Without tests, it isn’t before the child turns 2 or 3 years old, that his impediment becomes clear. Unfortunately, the later it is diagnosed, the more difficult it gets to treat – to the extent that every month counts.

There’s one woman, though, who is not only questioning the system, but is also giving you perhaps your only shot at giving your child the normal life they deserve. She’s a different kind of teacher – who wants to ensure that no parent has to undergo that gut-wrenching pain of fearing for their child’s future. A teacher your child must meet a little early in life, so that she may prepare them to be able to go a normal school one day.

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Meet Shefali Shah, India’s only LSLS Certified Auditory Verbal Therapist– i.e. Listening and Spoken Language Specialist – who strives to ensure a hearing impaired child can listen and communicate just like the rest of us.

Who IS an LSLS – and why is Shefali the only one?

Even as she graduated in financial management, she never considered a career in commerce.

“I’ve always wanted to do something that would impact lives in more than a superficial manner.”

Right around thenshe chanced upon a book on the legal proceedings of an African American convicted of homicide, who could not defend himself because he had hearing loss.

When a child is diagnosed with a hearing impediment their ability to learn spoken language is compromised. In that case, there are three possible courses of action to help them work their way around their condition: by teaching them sign language, how to lip-read or third, and unfortunately, the most uncommon one- train their brains to respond to auditory stimuli, to learn to listen, and hence, how to speak. An LSLS insists on leading the kid through the road not taken.

An LSLS certified professional is a cross-disciplinarian clinician – their technique is derived from three sciences: audiology, speech-language, and education of the deaf. This includes a basic knowledge of other professions, namely otology, sensorimotor integration, child development, psychology and family counselling. But there aren’t courses on LSLS. In addition to the above mentioned skills, one can only master the technique, give the examination and procure the certification of being an LSLS certified AVT, after being mentored and trained by an approved LSLS professional for three years, and having at least 900 hours of supervised therapy clock hours with them.

First step towards Sound Steps

Initially, Shefali wanted to be an Auditory Verbal Therapist. “You’re cheating on yourself if you don’t get your fundamentals right. If I wanted to do this, I wanted to do it the best way, and at the best place.”

After completing her diploma from Mumbai, Shefali got accepted to the Smith College – Clarke School for the Deaf Teacher Training programme – where she studied, as well as worked for a year after, and met some of the best minds in the field. She later made her way to Holland, to the Instituut Voor Doven and studied some more.

“But I was clear I wanted to come back; foreign countries have enough help. In India, on the other hand, not much work had been done in a meaningful way.”

Shefali returned to the country to set up her practice, and knew right away that she wanted to work with really young children. “I needed to start at the beginning which was with babies and infants.”

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This for her was as daunting as it was exciting. “With little children, you’re not inheriting any baggage, working with a clean slate – but you are also in-charge of it all. You may not be able to diagnose many conditions in 3-4 month olds. When they manifest, you’re going to have to be able to treat that – lest the parent s pull you up and question why they sought you out at all. You’re taking up the whole deal of the child’s first stage of development.”She started out, only to realize, that somewhere, her internationally acquired skills weren’t getting reflected in practice.

“In India, we have the technology, we have the tools available- we have advanced means of communication even. But we aren’t able to deliver- because we don’t have the professional skill.”

Her quest for perfection led her to Warren Estabrooks– a world renowned LSLS Auditory Verbal Specialist. He mentored her closely, thus giving India its only practicing LSLS professional.

The missing piece

With the missing piece in place she came back determined to help raise awareness that hearing loss can be contained. Setting up her now two year old early intervention centre, Sound Steps, was her way of helping. It has chambers for auditory verbal therapy, audiology, counselling speech therapy, and occupational therapy.

“I wanted parents to have internationally recognized tools and techniques – as specific as telling them if their child is even a month behind his ideal development.”

The studio has different chambers performing different functions, all accurately calibrated with state-of-the-art technology to ensure perfection. But to a child, it is a wonderland. An array of colours and toys and paraphernalia to make sure he doesn’t miss out on the fun part of learning.

“A Baby’s place is at home, on his mom’s lap not at a centre to come undergo treatment.”

This is what inspired her to build her happy little space. A child typically spends an hour a week with Shefali for 3-4 years. During that time, all the professionals – audiologist, LSLS professional and Counsellor are at work to monitor their progress. Many children who opt for hearing aids and cochlear implants also approach Shefalias she helps the child adopt his new form of receiving stimulus.

 

And now that funding has opened up, many underprivileged children also get implants and aids given to them at no cost. This has opened up Soundsteps to people even from the interiors of Maharashtra. Shefali, with her heart in the right place, offers them her expertise at slightly subsidized rates. To her, that look on a child’s face when the first beam of sound falls on his ear, makes it all worth it.

Like the torch-baby that just walked in through her doors last week.

The TORCH Baby

A TORCH baby is one who is born with several syndromes. This one had herpes as well as rubella –which entailed compromised vision and hearing loss.

“I told his mother when I looked at his case, that I cannot guarantee success. She laughed and told me, ‘My son’s a fighter. To every teacher who expressed doubts about him – his occupational therapist, physiotherapist – he only answered by excelling. I’m sure he will do well here, too.’”

And indeed – a child with the most complicated medical history, turned out to be a medical marvel!

“That look of incredulous joy on his face, when he heard something for the first time in our audiology booth, was beautiful. He lit up, as if he was thinking- ‘Is that really sound?’ Makes me realize we take so many joys of life for granted…”

But, you “Mustn’t just want to be a do-gooder,” she concludes. “It is very hard work. Really scientific and technical knowledge goes into becoming an LSLS professionalwhich you must then be able to adopt and adapt and then filter it down to the baby – that’s the magic,” she says.

 

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Indian Parenting –Feeding over Reading

Shefali feels that more than the lack of advancements in science in India, parenting as a concept doesn’t exist in India. “We are obsessed with feeding the mouth, not the mind. Parents don’t realize that they are responsible in the development of their child’s core personalities, not schools. And when their child has hearing loss, they feel sat upon even more- seeing it as a burden. They don’t realize that all they really have to do is bring up their child well. They would have had to be highly involved, anyway. Just that in this case – the child happens to have hearing loss.”

Parents, she feels, are the child’s greatest strength; hence, they must always be in the know. They must be the drivers, in fact – so involved and informed that they can pull up the professionals for doing a half-hearted job, too, if need be.

She herself loves being a woman professional –to be able to nurture a family, raise children, have a wonderful husband, as well as have a fulfilling and flourishing career, she believes, are the gifts of womanhood.“It’s a fabulous life to have,” she signs off.

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