Your child has just been diagnosed with Cerebral Palsy. There is
an emotional upheaval in the family. Feelings of grief, doubt,
guilt, sadness, fear, and uncertainty overrun any feeling of
joy. This is the time when parents need to connect with someone
who can share their feelings, who can make them feel that they
are not alone in this trauma.
They need to understand more about Cerebral Palsy and why their
child has been afflicted with CP, what are the repercussions,
the line of treatment and therapies, who to contact, others who
are going through the same condition. In short, they need to
learn how to cope with Cerebral Palsy and rehabilitate their
child in society, to make him/her as independent as possible.
This is where the different CP associations come in. They are
normally independent, non-profit making organizations run by
volunteers. Each country has these associations. They
disseminate information and act as support groups, which network
with other likeminded groups to ensure that people with CP are
able to participate in community life better; that they too find
their place in the sun.
The associations play a very specific role:
They disseminate information through newsletters, web sites,
personal contacts about Cerebral Palsy in general, specific
forms of CP, how to reach the right doctor and specialists,
support groups, medical negligence, lawyers, funding etc.
Extend services, which help in early intervention, medical
diagnosis, evaluation and treatment, therapy, etc.
Help parents to identify specific needs of their CP child.
Provide connectivity between patients, their families and
community at large, to bring about a positive attitudinal change
in community attitudes towards a disabled child.
Enable people with CP to develop their capabilities to become
independent and productive members of society.
Develop resources and therapies to increase their participation
in activities and occupations.
Provide a platform to meet other families in a similar situation
for that much needed strength and succour, and alleviation from
the ‘I am not alone’ feeling.
Provide participative and inclusive social, educational and
recreational programmes.
Provide educational services specific to the needs of the CP
child
Undertake research and awareness programmes to root out causes
of CP, like German measles and incompatibility between blood
groups of the mother and the child. Some prominent associations
are also working at reducing incidents of Low birth weight,
premature births and lack of sufficient oxygen supply to the
brain.
Associations also come out with innovative ideas and improved
technologies, which increase mobility, communication and general
well being of the CP child.
As for associations, each country has its own cerebral palsy
associations and most of them are listed on the net. They have a
common mission-to better the quality of life of a CP child and
consequently the child’s family.
Category recommended
India site :
http://www.nrcissi.org/ - The National Resource Centre for
Inclusion. - The Spastics
Society of India.
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