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Wednesday, September 21, 2016

Understand disability

As a parent of a person with Autism who exhibits self injurious behavior and aggression at times I am deeply hurt and confused by incidents such as these which I have experienced in different contexts and witnessed as well as heard /read about .
My husband Sriram Narayan and I have done more than our best ,,,we have spent most of our time, money and energies towards rehabilitating him with the best therapies and education /training available wherever we lived . I have trained myself in the field and been successful in establishing alternate ways of communication for him as he does not speak.
We have made lifestyle changes to accommodate his needs and help him pursue his interests. We have been active in advocacy and awareness drives so that the disorder is recognized for what it is and appropriate services are provided .We have always mentored and supported other parents who were with us in this journey Where there were no services to accommodate students like him we have initiated our own innovative solutions .
In spite of this he does have challenging behavior - he is self injurious and sometimes aggressive towards adults who are supervising or facilitating him .While we constantly work on reducing the triggers for such behaviors ,It is not possible to be present 24/7 , always predict triggers or guard him from self injury or guard others from getting hurt !!
As we grow older we feel the need for systems to support and help him ..systems we are trying to create ..however without the help , understanding and support of the larger mainstream community it will be impossible .
This is a mother’s appeal to society in general..to try to understand disability better ,, to accommodate and be more open minded to social diversity . to stop blaming and start joining in .Together perhaps we will have a better chance of making things easier.... first of all for persons with disabilities , secondly their families and caregivers who deal with this on a daily basis and finally society in general .
At this juncture I would also like to acknowledge and thank family members , friends ,professionals who serve our children and some complete strangers who have stood by us and supported us ..hope this will in no way diminish your awesomeness :-)

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