children with down syndrome

Not enough support for them

Right after Samin* was born, his doctor ran tests and confirmed that he had down syndrome.

And like many others faced with this situation for the first time, his parents were worried.

"We could not deal with it at first. We fought frequently. Eventually, my husband left us," said Samin's mother. "I started to raise Samin all my myself... after some time, his father realised that he was wrong. We reconciled."

Samin is almost 12 now. He is studying at a private school in Dhaka.

An individual with down syndrome has an additional chromosome. A baby is typically delivered with 46 chromosomes. One of these chromosomes, chromosome 21, is duplicated in infants with down syndrome. Although individuals with down syndrome may appear and behave similarly, their abilities vary.

According to the government's Disability Identification Survey (DIS), 6,028 individuals in Bangladesh have been diagnosed with down syndrome so far. However, there are no official statistics on children with down syndrome.

"Even though Dhaka has some schooling services for children with down syndrome, these services and schooling are not available to every area of the city. The situation is much worse in rural areas, where there are barely any schools for children with down syndrome."

— Md Nurul Islam Principal of SWID Special Education Teacher's Training College

Ruman Mohammad, 27, found out that her child has down syndrome when he was nine. She expressed her regret not diagnosing him earlier, as she now believes that her son would've had an easier time at school if he were.

Not all parents realise that early detection and education help young children with down syndrome. Some parents feel compelled to hide their children fearing social stigma.

 The situation for parents with lower income is even more difficult when it comes to schooling and raising the child.

Md Nurul Islam, principal of SWID Special Education Teacher's Training College, said, "Even though Dhaka has some schooling services for children with down syndrome, these services and schooling are not available to every area of the city. The situation is much worse in rural areas, where there are barely any schools for children with down syndrome."

"Moreover, we also need more qualified and trained teachers who can help these kids flourish. There are around 600 teachers at SWID, caring for over 40,000 students with disabilities, but this is still an insufficient ratio," he mentioned.

An inclusive education system and a national curriculum are necessary for these students, he added.

Nurul also stressed the need for listing such educational institutions to the education ministry's monthly pay order (MPO) scheme.

The National Disability Development Foundation oversees 74 MPO-listed schools for students with down syndrome. In addition, there are some NGOs working to ensure these kids get proper education and training.

"Since the number of children and individuals diagnosed with down syndrome is steadily rising, it is essential that the government ensure they have access to a fully inclusive educational and employment system."

— Sarder A Razzak Chairperson of Down Syndrome Society of Bangladesh (DSSB)

"Children with down syndrome have intellectual disabilities and therefore they struggle to integrate with typically developing peers and the educational system. In addition, people treat them poorly as they seem different from everyone else," Nurul said.

"They can have fulfilling lives with their families and communities if they are given the opportunity to attend schools with appropriate training," he added.

A number of legislations were introduced in 2013 with an objective to safeguard the rights of children with special needs, notably those with neuro-developmental disorder like down syndrome. These include the Persons with Disability Rights and Protection Act, the Children Act, and the Protection of Persons with Neuro-Developmental Disability Trust Act.

Sarder A Razzak, social activist and chairperson of Down Syndrome Society of Bangladesh (DSSB), said children with down syndrome often have dormant talents, including the ability to sing, recite, and dance. Sometimes they even outperform their neurotypical peers.

His son, Rafan, 14, was born with down syndrome.

"He's always had a thing for the dance floor, so I gave him plenty of support and put him through dance school to help him realise his abilities and develop a sense of self-worth and confidence," Razzak said.

"Since the number of children and individuals diagnosed with down syndrome is steadily rising, it is essential that the government ensure they have access to a fully inclusive educational and employment system," he added.

(*Names have been changed to protect the identity of individuals.)

 

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