There are responsibilities that all of us have.
Friends who read my blog "Sashank's story" made many valuable contributions to the blog as comments. Gayathri wrote and I quote:
'Parents always want the very best for their children. But it always comes with expectations, with norms attached by them or society. There is a level of self-gratification in parenthood. I think with Viji and Murthy, you see the truly unconditional love for both the boys, the kind of parental care that revolves around what their sons need and want'.
'On a related note, I watched Larry King in which the topic was autism. One in 150 children in the US is diagnosed with autism, across a spectrum, but autistic. They were discussing the importance of receiving the support, the funding, the facilities and the awareness required to ensure that as adults, these individuals can function as independently as possible'.
'I think it is so important for every single one of us to realize that there are responsibilities that all of us have towards such wonderful people and that it all begins with the younger generation being involved and aware'.
I was curious to know if, apart from the family, there was any significant contribuition by the state or the society. It was heartening to learn from a relative of hers from USA, about how the school in which his autistic son studies, held an awareness meeting of students and parents. The purpose was to explain how challenged some children could become and the need for 'an understanding' from the others. This was done at the initiative of a well known Hollywood actor, who was also a parent in the school. The actor had heard about the autistic son being beaten up and had suggested this meeting. This positive step did help and now the meeting is an annual event at the school.
Rama and Gopi also spoke about a relative of theirs who took her autistic child on a tour of Europe and that the experience was not even. Italians were very sympathetic, French surprisingly not so.
Rama also gave me a book to read 'The memory keepers daughter'. It is also being made into a movie. The novel is based on a true story of the sixties when the attitudes and awareness were very different in the US. Those days, even doctors recommended that a child diagnosed with the down syndrome be sent to an institution and not taken home!
A very recent and well written two part article in Seattle Times by Maureen O'Hagan, examines the status of care in the case of Down Syndrome and Autism. While the state steps in through the Division of Developmental Disabilities, she says that 'most caregivers are relatives, whose dedication saves the state untold millions. Today, institutionalizing kids is rare. Although discrimination exists, people with developmental disabilities go to school and play sports and work like everyone else'.
Indeed the times have changed, I read a story about a couple who decide to have the child in spite of learning that the unborn child is with Down Syndrome. There was another story wherein a couple decide to adopt a Down Syndrome child, while they already have a child of their own.
While she speaks of the problems of funding, 'Washington officials have only just begun to take action. The state Developmental Disabilities Council has formed a committee. And Washington's Long Term Care Task Force, which was mainly aimed at elder-care issues, has also factored in people with developmental disabilities. What the groups haven't found are solutions', one hopes that solutions are indeed found soon.
I wanted to see if India had an organisation similar to 'Developmental Disabilities council' and did not find any. However, I found these websites:
'http://www.icddelhi.org/'.
http://www.ncpedp.org/
http://rehabcouncil.nic.in/index.htm
http://naseoh.vishwa.com/
I cannot say now how effective these organisations are except to feel happy that there are efforts made by the Government and others.
www.autism-india.org, states that Autism in India is estimated at 1 in 500. While the awareness is getting better, the report says: 'This problem occurs in many countries, but is especially true in India where there is a tremendous lack of awareness and misunderstanding about autism among the medical professionals, who may either misdiagnose or under diagnose the condition.'
As I was writing this I saw another report which makes me wonder, what is with the modern day world where so many children are affected?Here is what BBC has to say on April 25, 2008:
A third of UK girls aged 11 to 19 have tried to harm themselves, a survey for a mental healthcare provider suggests. Of those who admitted to self-harm, 43% said they did it because they were depressed, 17% because they were angry, 10% because of relationship problems and 10% because they were stressed.
Dr David Kingsley, consultant psychiatrist at Cheadle Royal Hospital run by Affinity Healthcare - a mental healthcare provider for the NHS who commissioned the research - said professionals felt it was an increasing problem.
'Parents always want the very best for their children. But it always comes with expectations, with norms attached by them or society. There is a level of self-gratification in parenthood. I think with Viji and Murthy, you see the truly unconditional love for both the boys, the kind of parental care that revolves around what their sons need and want'.
'On a related note, I watched Larry King in which the topic was autism. One in 150 children in the US is diagnosed with autism, across a spectrum, but autistic. They were discussing the importance of receiving the support, the funding, the facilities and the awareness required to ensure that as adults, these individuals can function as independently as possible'.
'I think it is so important for every single one of us to realize that there are responsibilities that all of us have towards such wonderful people and that it all begins with the younger generation being involved and aware'.
I was curious to know if, apart from the family, there was any significant contribuition by the state or the society. It was heartening to learn from a relative of hers from USA, about how the school in which his autistic son studies, held an awareness meeting of students and parents. The purpose was to explain how challenged some children could become and the need for 'an understanding' from the others. This was done at the initiative of a well known Hollywood actor, who was also a parent in the school. The actor had heard about the autistic son being beaten up and had suggested this meeting. This positive step did help and now the meeting is an annual event at the school.
Rama and Gopi also spoke about a relative of theirs who took her autistic child on a tour of Europe and that the experience was not even. Italians were very sympathetic, French surprisingly not so.
Rama also gave me a book to read 'The memory keepers daughter'. It is also being made into a movie. The novel is based on a true story of the sixties when the attitudes and awareness were very different in the US. Those days, even doctors recommended that a child diagnosed with the down syndrome be sent to an institution and not taken home!
A very recent and well written two part article in Seattle Times by Maureen O'Hagan, examines the status of care in the case of Down Syndrome and Autism. While the state steps in through the Division of Developmental Disabilities, she says that 'most caregivers are relatives, whose dedication saves the state untold millions. Today, institutionalizing kids is rare. Although discrimination exists, people with developmental disabilities go to school and play sports and work like everyone else'.
Indeed the times have changed, I read a story about a couple who decide to have the child in spite of learning that the unborn child is with Down Syndrome. There was another story wherein a couple decide to adopt a Down Syndrome child, while they already have a child of their own.
While she speaks of the problems of funding, 'Washington officials have only just begun to take action. The state Developmental Disabilities Council has formed a committee. And Washington's Long Term Care Task Force, which was mainly aimed at elder-care issues, has also factored in people with developmental disabilities. What the groups haven't found are solutions', one hopes that solutions are indeed found soon.
I wanted to see if India had an organisation similar to 'Developmental Disabilities council' and did not find any. However, I found these websites:
'http://www.icddelhi.org/'.
http://www.ncpedp.org/
http://rehabcouncil.nic.in/index.htm
http://naseoh.vishwa.com/
I cannot say now how effective these organisations are except to feel happy that there are efforts made by the Government and others.
www.autism-india.org, states that Autism in India is estimated at 1 in 500. While the awareness is getting better, the report says: 'This problem occurs in many countries, but is especially true in India where there is a tremendous lack of awareness and misunderstanding about autism among the medical professionals, who may either misdiagnose or under diagnose the condition.'
As I was writing this I saw another report which makes me wonder, what is with the modern day world where so many children are affected?Here is what BBC has to say on April 25, 2008:
A third of UK girls aged 11 to 19 have tried to harm themselves, a survey for a mental healthcare provider suggests. Of those who admitted to self-harm, 43% said they did it because they were depressed, 17% because they were angry, 10% because of relationship problems and 10% because they were stressed.
Dr David Kingsley, consultant psychiatrist at Cheadle Royal Hospital run by Affinity Healthcare - a mental healthcare provider for the NHS who commissioned the research - said professionals felt it was an increasing problem.
"One in three girls is an extraordinary figure - I was stunned by it.
"A study recently suggested three biggest causes were family problems, problems with friends and problems at school."
He said parents and teachers should be vigilant for young people who were withdrawn, struggling emotionally, or feeling low.
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