Sonalee Shyamsunder, founder and director of Urmi Foundation, believes that working with communities is as important as improving educational systems.
Sonalee Shyamsunder, founder and director of Urmi Foundation, believes that working with communities is as important as improving educational systems.

Two years back, while honeymooning in Sri Lanka, Sonalee Shyamsunder came across children with cerebral palsy and mental retardation. Talking to the parents in Bentota and Kandi, she found their reactions rather surprising. They thought their children, who might be dependent on them for the rest of their lives, to be an opportunity to do some good in the world. Children with neurological disorders, in these cases, were received as blessings, not burdens.

While interactions like these are not routine reminiscences for romantic honeymooners, for 31 year old Sonalee Shyamsunder, it is just so. Her work with children who have neurological disorders is the basis for Urmi Foundation, which she started in 2011. Registered in 2012 as an NGO, Urmi Foundation is now a modest team of special educators and therapists that work at BMC special schools for children with autism, cerebral palsy, Down’s Syndrome and other neurological conditions.

The team supports 4 BMC special schools at Chembur, Sion, Dadar and Ghatkopar and cater to almost 200 students in the age group of 6 – 18 (while corporation schools have students only till the age of 14, students with neurological conditions have an extension till the age of 18).

Before you can be amazed by these figures, Sonalee, who formerly worked as a news reporter, provides one more as a reality check. “There are about 2.5 lakh children in Mumbai with neurological disabilities or with an IQ below 90 who are in need of special schooling. We are glad that the BMC is one of the few corporations that actually have special education for children with these disorders. They cannot be inclusively educated. Their learning curves are different and before they can be mainstreamed, they need to go through therapy and special education. Thus, instead of starting new schools, I felt it was best to support existing systems.” Special schools need the trifecta of infrastructure, therapists and special educators and Sonalee observes that very few schools in Mumbai have all these in the same place.

In a survey conducted by the Urmi Foundation in 2011, the dropout rate across 11 BMC special schools for children with neurological disorders was 52%. Last year, 4 students had passed away as well; neurological conditions take their toll on physical health as well. One of the major reasons for alarming dropout rates are the constant migration of the families.

Apart from work and hometowns which are common reasons for shifting families, many of them are not welcome in neighbourhoods because of their children. Neighbours are worried; what if the child wanders in through their open doors? Stigma is an unfortunate by-product of neurological disorders. Sonalee recalls pregnant women not visiting these children out of fear that their babies would turn out like them. Moreover, parents consider these children as burdens. They feel that while they may feed and educate the child, will the child be able to take care of them in their old age?

Urmi Foundation thus believes in synchronising schools and communities. It is not an easy job – to believe that changes in the teaching-learning methodology may not be enough. With 185 children in the Chembur-Baiganwadi area who are confirmed as neurologically disabled, there needs to be an overall change of mindsets, says Sonalee.

“A sample syllabus for a 13 year old autistic child for one year could be something like this: tying shoelaces, washing hands and buttoning shirts. It seems like these are tasks for children less than half his age but these are crucial lessons for him to master. However, potential donors tend to get diffident when they observe these ‘slow’ progresses. They forget that what seems like a small step for us is a big leap for these students.” As future steps, Urmi Foundation plans to look into medical facilities for these children as well as vocational training.

Urmi Foundation, in its early days, was a dream that almost didn’t happen. But thanks to the efforts of Gargi Mhatre, the inspector of special schools for mentally challenged at the BMC’s Education Department, a base has been formed. Last year, Urmi trained about 75 teachers for speech therapy and increased the number of students in the school from 7 to 32.

As Sonalee rattles away terms that she uses in their day to day teaching activities, she hopes that 15 years from now Urmi Foundation will cease to exist since current systems would work efficiently. And on days when she feels the path is too tough, she remembers students like young Arjun Lakhraj Singh who is afflicted by Down’s Syndrome or 15 year old Aarti Kale (name changed) who has very low IQ but is coping “brilliantly”.

Urmi Foundation lists these methods for improving the sitting span, eye-hand coordination and motor skills, and reducing hyperactivity in children with neurological disorders:

l Making shapes of clay starting with simple noodle making to form or an object making. Draw different lines on big paper sheet and ask the child to make shapes according to lines.

Duration: 5 mins to 10 mins

l Use watercolours and make simple strokes out of it on entire paper after which let him/her go through a drumming session. Again ask him/her to use water colours to make strokes. The difference is visible (to reduce hyper activity)

Duration: 10 mins to 30mins

l Ask a child to blow a balloon ask him to dip the same in the water colour, and teach him ballon stamping on the paper (since a balloon is delicate child needs to learn to hold it and use it gently)

Duration: 10 mins to 30 mins