12th World Down Syndrome Congress: India, 2015

from Keeping Up With Down Syndrome New South Wales:

Registrations are now open for next year's World Down Syndrome Congress in Chennai, India:

17th August - 21st August 2015

Call for papers

Opening - August 2014

Final call - November 2014

12th World Down Syndrome Congress website

Bangalorean’s docu-film makes it to world festival

By Shyama Krishna Kumar from The New Indian Express:
It is a proud moment for director Pavitra Chalam and her team as her film Indelible has made it to DocWeek 2014, a film festival to be held in Adelaide, Australia on March 6.
The team is currently in Australia promoting their feature length documentary. The story of seven people living with Down’s Syndrome, a genetic disorder caused by an extra chromosome that leads to developmental delays and mild to moderate intellectual disability, the 60 minute documentary is a testimony to their courage and indomitable spirit.
“In 2010 I made a film called Khushboo which dealt with children with complex needs. Making this film brought to fore the kind of injustice and ignorance all of us harbour against people with special needs. It’s something I’ve been quite passionate about and Down’s syndrome has also been ignored like almost everything else that comes within the same purview,” explains Pavitra Chalam.
The idea for the film finally materialised when Pavitra met the Director of the Down’s Syndrome Federation (DSF) of India in Chennai (where the film was also shot subsequently). It was here she realised that a lot had to be done if people’s perceptions needed to be changed and a more inclusive society had to be built. DSF went ahead and funded the film. “Most of the crew members worked for free on this film and the film happened because of the goodwill and help from a lot of people,” says Pavitra.
The shorter version of the film at 16 minutes was shown at the 11th World Down Syndrome Congress, that took place at Cape Town in 2012, on the final day of the conference. India pitched to organise the same conference in India and went ahead and won the pitch. The next World Down Syndrome Congress will take place in Chennai in 2015.
The documentary features the stories of Babli, Revathi, Arti, Manimeghalai, Archana, Sandhya, Ashwin, their families and how they face life on a daily basis. “I think what I learnt and what I was witness to was their spirit, their ability to love, see beyond barriers and to push outside barriers. They have so much to deal with - physically, intellectually and the way people perceive them as well. But they face all of it with so much dignity,” says Pavitra, who has previously directed Rooting for Roona, a film about a little girl suffering from hydrocephalus, a birth defect caused by a build-up of fluid in the brain leading to swelling of the head.
The short version of the film also won the ‘People’s Choice Award’ at the Delhi Shorts International Film Festival in 2012. It was also part of the ‘official selection’ of films at film festivals across the world such as the ‘Picture This Film Festival’ in Calgary, ‘The Thinline Film Festival’ in Texas, ‘The India International Film Festival of Tampa Bay’ in Florida and the ‘DocuWest Film Festival’. The feature version had its worldwide premiere at the Seattle South Asian Film Festival (Tasveer) in October last year and has since been doing the rounds of the film festival circuit.

Down Syndrome detection with zero risk to mother and baby now in Mumbai

by Sumitra Deb Roy from The Times of India:
MUMBAI: A new revolutionary technology called NACE (Non-invasive Analysis for Chromosomal Examination) with more accuracy as compared to 1st trimester screening has been introduced in Mumbai. It can detect chromosomally linked diseases like Down syndrome with a simple blood test. It can precisely tell a pregnant mother, as early as three months into her pregnancy, whether her child has Down syndrome.
Currently, tests such as amniocentesis and Chorionic Villus Sampling (CVS) are widely used to detect any chromosomal abnormality but these tests are invasive and carry a high risk resulting in a miscarriage. The NACE test is performed on the cell free fetal DNA, which is extracted from the mother's blood via a simple blood draw, hence posing zero risk to the baby and to the mother. It is done from the 10th week to the 16th week of pregnancy, giving enough time for the woman to be counseled accordingly.

Magic shows to create awareness on special persons' rights

from The Times of India:
 

MANGALORE: Suresh Nayak, 41, hailing from Puttur, is all set to launch a campaign to spread awareness on the rights of differently-abled persons. 

Nayak, who was born with Down Syndrome, will enthrall students of government schools acrossDakshina Kannada with his magic shows. Titled as Magic Down Syndrome, his shows will spread the message-'Mental retardation is not a disease'. 

Nayak holds a world record for having the longest tongue and four national recognitions for his various skills. 

Umesh Nayak, brother of Suresh, said, "Suresh is trained by magicians at Mangala Magic Circle. He has preformed magic shows and showcased his memory power at more than 1,000 stages. He will launch his show in the district after Dasara holidays," he said adding that the programme can be extended to schools outside the district if he gets sponsors. 

Suresh is trained in 20 types of magic including production box, feather tricks, train creation and balls tricks. 

Little steps for a rewarding result

from the Hindu by R. Sujatha:

Several years ago, when Sujeet Desai visited the city, he performed exclusively for children with Down syndrome. The children were thrilled and the parents at the programme told me that there was hope, even for their children.

Sujeet’s mother told the audience how her son, who had Down syndrome, had discovered a new world, was independent and travelled around the globe for music performances. Sujeet spoke to the children and remained the star attraction on that day.

Last week, the Down Syndrome Association of Tamil Nadu organised a day-long workshop for 30 government school teachers, who were exposed to training methods of therapists from the United Kingdom. D. Sabitha, principal secretary of school education, inaugurated the workshop, and told the teachers that they would in turn, train their peers and colleagues. The aim is to address the needs of children in mainstream government schools, and those in residential centres.

Chronologically, the child could be a teenager, but may have the IQ of a pre-teen, explained Julie Hughes. Children with Down syndrome must be taught using visual cues, given their low attention span and their problems with hearing. Children often hear only the last syllables of a word and they have difficulty in retaining sound patterns in their memory. Suppose you have to teach the child the word ‘ball’. It would be better to use the word repeatedly in as many sentences as you can. So if you are too quick with the words, the child does not understand it.

Children with Down syndrome are at a higher risk for ear infections and hence have difficulty in hearing, ENT surgeon Mohan Kameswaran says. This leads to speech delays and unlike children without the condition, they are unable to understand verbal cues. “Hearing impairments and octological problems are found in 38 to 78 per cent of children with Down syndrome, compared to 2.5 per cent of other normal children. Such children must undergo audiological screenings at birth, and then every six months for three years,” Dr. Mohan said. However, appropriate evaluation and treatment can have a significant impact on the quality of life of children with Down syndrome, he added.

Down syndrome is a genetic disorder that affects one in 750 children in India, said Rekha Ramachandran of Down Syndrome Association of Tamil Nadu. The only way to ensure that such children are mainstreamed in schools is by training enough resource persons, she added.

When I asked her about Sujeet and his extraordinary achievement, she said independence comes with confidence in communication. In India we are still taking the first tentative steps towards teaching our children with Down syndrome to communicate. When this is achieved, we will have many Sujeets.

India's official film for the World Down Syndrome Congress 2012

from CurleyStreetMedia on YouTube:
"The Indelible trailer is an introduction to a feature length documentary that tells the inspiring stories of seven people with Down Syndrome in India. This short version of the film has been created specifically for the World Down Syndrome Congress in South Africa. This is the official film for the Downs Federation of India."