6/1000 kids are born with a hearing loss. Which is what Shefali Shah is addressing via Mumbai’s only early intervention center aptly titled Sound Steps catering to helping children be able to hear, speak and listen. Dealing with children and their families from all across India, Shefali is India’s only practising LSLS specialist and works to help children born with hearing loss via play!
We caught up with her in a small tete-a-tete at her beautiful, warm and absolutely quiet clinic in Lamington Road and heard what she had to say.
Q: Tell us about yourself.
I have had the good fortune to have been mentored by some of the finest in this field. My mentor Warren Estabrooks is inspirational in his ability to consistently deliver Auditory-Verbal Therapy to families of babies and young children with hearing loss, artfully, through play and conversation while focussing all along on the science of hearing loss. I am fortunate that he continues to be my professional guide.
At present I am India’s only practicing Listening and Spoken Language (LSLS) specialist.This unique qualification positions me to guide families with babies with hearing loss to learn and talk via listening alone.
As I work with families in India, some of them from smaller towns and villages, I continue to be impressed by how many of them harness the technicalities of hearing loss to their ability to incorporate play as the main vehicle for their babies to learn listening and spoken language.
Q: How did you decide to venture into the niche areas of hearing loss for children?
To answer in a single word : it was Karmic. How else do you explain my decision to opt to specialise in special education for children with hearing loss, having completed my undergraduate studies in Business and Financial Management?!
What drew me to my work was how spoken language developed in children deprived of the very sense that stimulated its growth.I continue to find it fascinating.
Q: How important is mandatory testing when babies are born in India?
The field of Hearing Science is precise. The only way to know whether one has a heairng loss is to test hearing and then to measure it accurately. Therefore, the only way to test hearing in babies is by testing their hearing precisely, so that you have individual-ear information that is reliable.
Given that hearing losss is the second most common birth anomaly, the need to test hearing at birth in babies is critical. All newborns must be screened for hearing at birth, by law. Mandatory screening for newborns exists in the U.S.A.; it is time that it becomes mandatory in India as well.
Q: Why is it important to get children with hearing loss to start therapy early?
Hearing loss is about the brain. Babies with hearing loss are deprived of the auditory stimulation their brains need to grow. Babies who receive the special help or Auditory-Verbal Therapy they need, as close to birth as possible, minimise this period of deprivation.They grow and develop just like other chldren their age.Their young brains adapt and quickly integrate the auditory information they need, so that they learn to listen and talk,despite their profound hearing loss.
Babies who receive help after the age of three years or who do not receive effective help, risk being permanently delayed.
Early and effective Auditory-Verbal Therapy allows babies and young children with hearing loss to listen, learn and talk like other children their age so that they participate in their communities, attend school and have friends with typical heairing children.
Q: Please share the issues what parents and children face.
Increasingly, parents in India are aware early,that their newborn’s development seems different. Parents report that their greatest source of frustration came from being told by professionals and family alike, to wait until their child was three or five years old.Those who persevered and found the professional help they needed, enjoyed children who grew up to be like other children their age.
Insufficient funding by Government, makes the habilitation of children with hearing loss unaffordable for many families. The need for specialised, individualised care, keeps the cost of services high and the service delivery cannot be reproduced on a mass scale easily.
As a result of limited awareness, teachers in schools are not sensitive to the needs of children with hearing loss.Classrooms are not acoustically treated; increasing classroom noise, making listening in noise tiring for all children, especially those with hearing loss.
Adults with hearing loss are ineligible to take the test of driving in India.
Q: Some of your children are graduating this year….how are you feeling?
Like a mother whose daughter has just married the nicest man in the world!
Q: Your favourite success story.
This is a hard question because every child’s story is so poignantly special.
a.I love that the least loved grandchild (because of her hearing loss), grew up to become her grandmother’s favourite and today speaks both English and Hindi. She was taught only English and learnt Hindi through listening to it spoken around her.
b. I love that a baby born with hearing loss, delayed motor milestones and neurological difficulty has grown up to become a chatterbox who insisted that his parents teach him Classical Indian Music.