Ep. #23 The Unique Child- With Chairperson of Fragile X society of India, Mrs Shalini Kedia.

Doctor Mommy Speaks Parenting

Today’s episode is for all those parents who want to know more about intellectual disability or have an affected child.

Have you seen a child who doesn’t act his age? He/she might act childish, have odd mannerisms like flapping hands or he might be drooling, constantly pulling his mum’s dress, keeping his head in a particular position. In medical terms, this disorder is called “intellectual disability” previously known as “mental retardation”

There are many causes of Intellectual disability but Let’s talk about a genetic condition called fragile x syndrome.It is the most common form of inherited intellectual disability in males and females. To discuss it in great detail we have with us Mrs Shalini Kedia, Chairperson of Fragile X Society-India. Fragile X is one of the leading causes of inherited intellectual disability and Autism worldwide.

We have spoken about things like:

• If you are planning a pregnancy then, what should you keep in mind before going ahead, with regards to Fragile X syndrome?
• What is the relationship between Fragile X syndrome and A common learning disability called Autism?
• Why is diagnoses a problem in India and what do you suggest should be done on the part of parents so they can become aware of this condition
• Once diagnosed with Fragile X syndrome, what next?
• What are the problem areas and what sort of therapies, programs can help these kids live a better life?
• What was the idea behind the fragile x society and how did it get conceptualized?
• What sort of work does your organization do to support families with fragile x syndrome.
• How can we reduce the stigma associated with intellectual disabilities and help kids and families struggling with such conditions?
• Where do these kids stand with regards to settling in society and living an independent life? What sort of vocational courses suit them so they can live a life of dignity without Relying on others.

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