Bengaluru: For architect Arun Rajani the world came crashing down 12 years ago when he got to know that his 28-day-old daughter has been diagnosed with Down Syndrome.
Reflecting on that moment he said, "It hits you like a shock when you as a parent get to know about this and then you have to pick yourself up and work towards making your child as independent as possible to live and face the society."
With that started a different journey to bring up Muskaan, which was fraught with challenges including acceptance amongst society and also lack of proper special educators and infrastructure for children with learning and intellectual disabilities. "It is challenging to be suddenly pushed into the role of a parent of a special child and deal with the society. We have to find properly equipped special centres, find an occupational therapist, speech therapist and it is tough. But, we were in a position to afford it. And it makes me think about parents who are not so fortunate. Where is the support for them and centres for children with special needs?" he observed.
Currently, the biggest challenge for Arun and his family is to get special educators to his house as she has not been going to a private special centre for the past six months. His concern is not a one-off challenge as the issue of inclusion and care and lack of human resource continues to haunt parents of children with special needs or even rare diseases.
"A lot of education is required amongst not just the parent but also the society as a whole and they should be taught how to show compassion and help the family as a part of a society,” said Prasanna Shirol, co-founder and Executive Director of ORDI (Organisation for Rare Diseases in India). His 19-year-old daughter is suffering from Pompe and is undergoing treatment at IAIM Ayurvedic integrated Hospital for the last six months.
“Schools lack the infrastructure and there not enough trained teachers and many a time the mother takes the role of a teacher in the school where she takes her child. The approach to special education system is evolving on its own based on the need and there is no proper structure," Prasanna lamented.
As for his daughter, he said, “She is still unconscious and it is difficult to arrange for that kind of medical cost." "The private schools that are there are not good enough for children with learning disability and there are a lot of dropouts as well. There is no early intervention Centre in the city as well," Prasanna quipped.
Dr Vaishali Pai, occupational therapist and early interventionist, who is also the Founder of Tamahar, said, "What is not happening is the creation of human resource and quality human resource. We need to come to level with the need and that area is something that needs a look at. The ratio of professional to the child is extremely skewed."
Causes and Types of diseases
- Causes of intellectual disabilities An intellectual disability may be caused by a genetic condition, problems during pregnancy and birth, health problems or illness and environmental factors.
- Down syndrome is not a disease or illness, it is a genetic disorder which occurs when someone is born with a full, or partial, extra copy of chromosome 21 in their DNA. It is the most common genetic chromosomal disorder and lead to learning disabilities in children. Down syndrome can have a range of common physical and developmental characteristics as well as a higher than normal incidence of respiratory and heart conditions.
- Fragile X syndrome or FXS is the most common known cause of an inherited intellectual disability worldwide. FXS is a genetic condition caused by a mutation (a change in the DNA structure) in the X chromosome. People born with Fragile X syndrome may experience a wide range of physical, developmental, behavioural, and emotional difficulties, however, the level of severity can be very varied.
- Autism,or autism spectrum disorder, refers to a range of conditions characterised by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.
- Pompe is a rare disease that causes muscle weakness and breathing trouble. It mostly affects liver, heart and muscles. Pompe is an inherited disorder caused by the buildup of a complex sugar called glycogen in the body's cells.
‘Acceptance by society crucial’
Acceptance among society, access for these children, and necessary support for the family is crucial,” said Dr Vaishali. She observed that Rights of Persons with Disabilities Act, 2016 is a positive move as it stresses on nondiscrimination, full and effective participation and inclusion in society, respect for difference and acceptance of disabilities as part of human diversity and humanity, equality of opportunity, accessibility, equality between men and women, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities. “There is sustainable developmental goal. Hence we have taken the first step in that direction but undoubtedly we need a long way to go," Dr Vaishali said.
Teaching children with learning disabilities
The parents have to rely on special schools and teachers for educating the child. They should have special educators or trained teachers so that they feel included. But, because of lack of human resource and infrastructure, parents have to often teach them at home, especially if they lack financial resources.
Who does one go to for advice?
Parents should approach paediatricians and gynaecologists, who will guide them through further process.
What is Tamahar?
A Trust which runs a school for children with brain damage or having difficulty developing on par with their neurotypical peers in all categories of development, eg. mental, intellectual, physical and emotional. Children are admitted to this program depending on their developmental age from 0-5 years.