Dementia is a condition that mainly affects the memory and gradually has an impact on every aspect of life. It is possible for people with dementia to live well if people around them have a better understanding and show compassion. This week is marked as Dementia awareness week. If someone in your family has dementia or if you know someone with dementia then try to spend some happy moments with them. Although people with dementia have poor memory, research shows that memories related to music are unaffected to some extent. This is my attempt to revive some musical memories of people with dementia who may have heard this song before :)
Wednesday, 20 May 2015
Dementia - डिमेंशिया
Monday, 30 March 2015
What a journey it has been!
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| The Diuli Team |
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| Pretty necklace made by Ashwin |
In July last year, I visited Goa
and had the most rewarding 6 week holiday. Meeting family and friends, feeling
the warmth of relationships and relishing the yummy Goan food. I cherished the
beautiful sunshine, sea, sand and rain all at the same time. Going back to
roots is certainly an overwhelming and rich experience. Personally, the most
fulfilling holiday ever!
Whatever I am today personally and
professionally started in my beautiful Goa. I grew up in Goa, studied in Goa
for most of my life and went to Mumbai to study Diploma in Special Education.
Having done my Special Education training, I came back to Goa to work with one
of the most dedicated and passionate teams one could ever find. Whenever I am
in Goa I definitely visit my Guru and a source of inspiration, Dr. Nandita de
Souza. Nandita or Nandu (as we all like to call her) was the leader of the
awesome team I mentioned earlier and gave us valuable guidance and impetus to
give our best to work with young children with autism. During this visit I met
Nandu and one other important member of that team – Elizabeth Kurian. Elizabeth
is a dedicated mother and successful architect who was one of the parents of
children I worked with . She is very knowledgeable, dynamic and wise person who
has taught me a great deal about endurance and hope. When I met Elizabeth she updated me with the
current activities of the parent group 'striving to infuse inclusion in every
stage of their child’s life- from schooling to adulthood so that they will be a
part of the community’. The parent support group is called TIES- Towards
Inclusion Everywhere in Society. Elizabeth
had also brought a lovely present for me, a beautiful necklace made by her son
Ashwin. Ashwin is one of my first students and the beautiful necklace made by
Ashwin has a special significance. It’s also special because it tells the story
of Autism in the Goan context. I am so lucky to be a part of that story! Like
Elizabeth and Ashwin many other parents are still in touch with me. I love to
visit them and see how they have developed and achieved so much for themselves.
When I started working in Diuli (Konkani word meaning little mud lamp), the team was focussed on understanding autism and imparting skills to children. There were not many services for children with autism and education was mainly provided in special schools. We were inspired by the notion of inclusive education and inclusive society; however, there was no such inclusive model in practice. Diuli was the first preschool for autism in Goa and the only early intervention service for autism. It was Nandita’s vision to start a service for children with autism in Goa. The inspirational and knowledgeable members of ‘Action for autism’ from Delhi provided the initial training and motivation to take that first step in Goa. Nandita had wealth of medical experience as a credible paediatrician and enormous goodwill in the community in Goa. It was with this great positive drive that Diuli was formed in Sangath Child Development Centre in 2002. Nandu established Sethu child development centre in 2005 and her team continues to work with various aspects of disabilities and special needs. Diuli team consisted of two Special Educators and four teaching assistants who worked with children with autism. We had none or very little experience with us to perform this extremely challenging task of teaching children with autism. It was literally on the job training for us. We had to behave as if we had things under control or that we had all the answers. The truth was we had no answer, but together we were there to help and learn, share and care. Jocelyn and I would often find Nandu in her office and share our inadequacies, ask difficult questions to seek guidance and reassurance. I remember her being very attentive and empathetic to our emotions but most of all her ‘what do you think you should do?’ strategy empowered us as teachers. We knew she would ask us to seek the answers from within us but it helped tremendously to go and share our thoughts, frustrations and many times joys of achieving little things. The teaching assistants Sheela, Thelma, Violet and Shaheena had some important qualities in common– absolute dedication to their work and abundance of energy and love for children they worked with. We had no idea where the children would be 10 to 15 years from then. There were doubts and concerns that although there is service for pre-schoolers with autism, there may not be enough help and support as years go by.
When I started working in Diuli (Konkani word meaning little mud lamp), the team was focussed on understanding autism and imparting skills to children. There were not many services for children with autism and education was mainly provided in special schools. We were inspired by the notion of inclusive education and inclusive society; however, there was no such inclusive model in practice. Diuli was the first preschool for autism in Goa and the only early intervention service for autism. It was Nandita’s vision to start a service for children with autism in Goa. The inspirational and knowledgeable members of ‘Action for autism’ from Delhi provided the initial training and motivation to take that first step in Goa. Nandita had wealth of medical experience as a credible paediatrician and enormous goodwill in the community in Goa. It was with this great positive drive that Diuli was formed in Sangath Child Development Centre in 2002. Nandu established Sethu child development centre in 2005 and her team continues to work with various aspects of disabilities and special needs. Diuli team consisted of two Special Educators and four teaching assistants who worked with children with autism. We had none or very little experience with us to perform this extremely challenging task of teaching children with autism. It was literally on the job training for us. We had to behave as if we had things under control or that we had all the answers. The truth was we had no answer, but together we were there to help and learn, share and care. Jocelyn and I would often find Nandu in her office and share our inadequacies, ask difficult questions to seek guidance and reassurance. I remember her being very attentive and empathetic to our emotions but most of all her ‘what do you think you should do?’ strategy empowered us as teachers. We knew she would ask us to seek the answers from within us but it helped tremendously to go and share our thoughts, frustrations and many times joys of achieving little things. The teaching assistants Sheela, Thelma, Violet and Shaheena had some important qualities in common– absolute dedication to their work and abundance of energy and love for children they worked with. We had no idea where the children would be 10 to 15 years from then. There were doubts and concerns that although there is service for pre-schoolers with autism, there may not be enough help and support as years go by.
The collaboration between parents and professionals
such as Nandu and Giselle Lobo made sure that children with autism have a
strong all round educational at every stage. I think it is a great achievement
for a small group of parents and goes to show that dedication and persistent
efforts towards the goal can make seemingly impossible aims come to existence.
Giselle Lobo pioneered in setting up resource rooms in mainstream schools in
Goa and made integrated/inclusive education work! Every step of the way Elizabeth, Rashmi,
Vandana, Roshan and many more hard working parents managed to gather funds,
community and political support, professional guidance and resources to make
education for children with autism and other special needs as inclusive as
possible. And now they are on the way of extending the inclusiveness by giving
important skills to young people with autism to enable them to be a part of the
community as contributing members.
Families of people with autism and other disabilities have often had to find their own answers and fight their own battles in India. We as a society have made very little contribution to make our society an inclusive one- where every person has equal opportunities and is treated with dignity and respect. This can be attributed to lack of awareness and resources. I hope success stories such as this will help to increase awareness. As for the resources, the team of parents in Goa have demonstrated that it is possible to raise funds and find resources if there is real determination to make a difference. Let’s join hands with them to make inclusive education and social inclusion a reality for everyone!
Families of people with autism and other disabilities have often had to find their own answers and fight their own battles in India. We as a society have made very little contribution to make our society an inclusive one- where every person has equal opportunities and is treated with dignity and respect. This can be attributed to lack of awareness and resources. I hope success stories such as this will help to increase awareness. As for the resources, the team of parents in Goa have demonstrated that it is possible to raise funds and find resources if there is real determination to make a difference. Let’s join hands with them to make inclusive education and social inclusion a reality for everyone!
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