Rincy Joseph is a mother who has taken under her wings a whole lot of children affected with Down syndrome.
Joseph is the founder of ALAN T 21, a welfare trust for the children diagnosed with Down syndrome. Her inspiring story started in a personal crisis.
Her life came crashing down when her son Alan was diagnosed with Down syndrome. Alan was lucky though. His mother helped him pass the tenth standard on his own. He studied the common syllabus to be the first child with Down syndrome to pass the tenth class exam in Kerala.
Joseph, however, was not ready to rest on her son’s laurels. Joseph quit her job as a nurse abroad and returned to India in 2014. She started ALAN T 21 and registered the welfare trust in 2015.
The Alan in the trust’s name stands for 'Aspire Life and Nature.' Joseph did not want to use the word Down in the association’s name. Down syndrome is medically known as trisomy 21 because it is caused by the presence of a third copy of chromosome 21.
The condition is the subject of an array of common misconceptions. Many people think that it is called Down syndrome because the affected persons lag in several areas. In fact, the syndrome is named after John Langdon Down, the British doctor who fully described the condition in 1866.
Difficult choices
Joseph realised that her second son, Alan, had Down syndrome the day after he was born. A blood test confirmed her doubts.
Down syndrome can be detected in the foetus stage through a blood test done in the 11th week of pregnancy, scanning in the third month, or a test of the cells of the placenta.
Most of the Down syndrome cases are explained by the age of the mother or genetic disorders in the family. ''In our case, both these causes were not applicable,'' said Joseph. She said that she brushed aside the suggestion at an early stage of pregnancy because she was still young.
''I soon realised the seriousness of the situation because I was working as a nurse. Yet I had no idea how to cope with the situation,'' she said. She ultimately quit her job to spent more time with her son.
''My career was promising. But I told her husband that there was no point in regretting not spending time with our son. We chose our son over financial security,'' she said.
Societal pressures
''I only wanted my son to be independent. Children with genetic disorders would have slower intellectual growth. So I breastfed him as long as I could. I used to breastfeed him even after the birth of my third child. There is nothing like breast milk for intellectual growth,'' Joseph said.
Children with Down syndrome tend to have less muscle strength. That is the reason they are not able to run around like the other children.
''I had to help Alan turn while the other babies could achieve the landmark themselves. He started talking when he was four years old. I taught him to ride a bicycle after three to four years of trying. I was keen to provide him everything that his siblings received. I ensured that in all stages of his development,'' she said.
''I was not as worried about Alan when we were abroad. Back home, we faced curious gazes and words of pity. My biggest challenge was to keep him away from people who said he lacked something.
''When he went to school, the other children in his peer group used to stare at him. I spent time with them to educate them. They responded very positively. They understood the situation better than any adult,'' she said.
Intensive parenting
''We raised the three children together. When I took care of Alan, his brother and sister encouraged him. They always helped him. They compromise a lot for him. They make it a point that Alan does not get to watch any violent scenes on television. Children with Down syndrome have a tendency to imitate such scenes.
''When we sought school admission for Alan in Kerala, almost all managements wanted to know where his siblings went. Some people told us that they could offer Alan a seat if his siblings too joined the school. We did not want to sent all children to one school. Alan would always try to meet his siblings if they went to the same school. Eventually, he got admitted to a school at Mallappally. Since then we did not have to worry about him. They took good care of him. Alan never lagged in studies.
''He would absorb whatever he saw. So we taught him through visuals, rather than reading or writing. That helped us a lot. We trained him at home too. Alan went to the Dubai International School up to third standard. Back in Kerala, we tried several schools until he got admitted to the Nirmal Jyothi School at Mallappalli. We prepared him to write the tenth standard exam through the National Institute of Open School. He passed with flying colours.
Tiding over crises
While everyone keeps away from children with trisomy 21, Joseph wants to bring them to the societal mainstream. She has made 'inclusive society' a cornerstone of her work with ALAN T 21.
Her work involves training children with Down syndrome and enable them to attend school with other children. They are given vocational training to help them lead an independent life.
ALAN T 21 is affiliated to the Federation of Down Syndrome India, making it one of the three associations in Kerala to be recognised by the national-level organisation.
The trust’s thrust areas
ALAN T 21 works on four core areas. The first among them is inclusive society. The idea is to create awareness among parents an society in general about bringing disabled children to the mainstream of society. Joseph offers lectures in medical colleges, nursing colleges, and paramedical institutions about her work.
Medical students can do a lot to help parents who worry about children born with disabilities. That is why most of Joseph’s awareness campaigns target medical students.
She also conducts roadshows to highlight the issue among the general public. College students are another target group because they would be parents one day and they have to be prepared for whatever life has in store for them.
The second thrust area is parental support and motivation. The trust offers guidelines for the parents of children with Down syndrome to help them grown safely and independently.
Quality living and advocacy is the third mantra. Disabled children have a right to quality living just like other children. They deserve good education. They have to be given vocational training that would help them be independent when they grow up. The trust is also working with companies to employ trained people.
Joseph and team wants to give lifelong support to children with Down syndrome. She wants the trust to be able to care for them when they are sick.
Special schools?
Joseph and team are often faced with a question from the parents of children with trisomy 21: ''Do we have to send our child to a special school?''
She said the answer depends on the parents' dedication. A normal school works just fine if the parents are willing spare enough time for their children. If not, choose a special school which does the job for you.
ALAN T 21 offers a special syllabus that draws content from the regular schools and special schools. This is perhaps the only organisation in Kerala which offers the best from both worlds. The organisation has three full time staff and two part-time staff, including a therapist and a special educator.
''We manage everything from preschool stage. We even give toilet training to children. The younger the children, the better they learn to be independent. That is what we tell the parents who want to enrol their children with us,'' Joseph said.
''People with Down syndrome tend to be emotionally suppressed. They become weak by the time they turn 30. So they need to be trained as early as possible,'' she said.
Transcending barriers
ALAN T 21’s reputation spreads by word of mouth rather than news reports or advertisements. People from faraway places visit Joseph’s team. ''We expect to develop further once we tide over the teething troubles. We want to move into our own building but our resources are limited,'' Joseph said.
Joseph envisions ALAN T 21 as a destination for all, irrespective of their religious beliefs or political convictions. She wants the organisation to outlast her. The trust is run by a share from the family business and the donations by people who acknowledge the good work. Joseph’s immediate plans are to find a permanent home for the trust.
Getting a home
Joseph said the genesis of the trust was a realisation that Kerala lacked facilities for disabled children. ''Most countries have excellent support systems for disabled children. Why can’t we have something similar?'' she asked herself when she was working in Canada.
She said the counselling in Kerala was far from motivating. ''Parents who are devastated by the birth of a disabled child are further weakened by the counselling. Society is always biased to these children. It is unjust. Life is a gift from god. Only he has a right to determine its course,'' Joseph said.
She added that she could still remember a doctor's damning advice to her of watching videos of children with mental disabilities and get used to the fate that awaits them. ''I was stunned,'' she said.
The guide
Joseph is pursuing an M Sc in disability rehabilitation at the Mahatma Gandhi University, Kottayam. She has turned a friend, philosopher, and guide to her younger classmates. They feel motivated by the life of Joseph.
Joseph and her 17 classmates are working to get their course recognised by the Rehabilitation Council of India.
Joseph has her hands full. She has to take care of three children, manage the trust, meet academic targets, and do voluntary service amid all these. She still manages to squeeze out a little time for her favourite hobby, painting. She has also published a book 'Life at 10.'
