Meet The SHEROES: A QnA With Surabhi Verma, Founder And Director Of Sparsh For Children

Surabhi Verma, Founder and Director of Sparsh For Children talks to us about her venture while also busting some common myths surrounding developmental disabilities in children. 

Tell us about yourself...
While doing my graduation, one of the subjects dealt with early childhood development and from that day onwards I was sure I wanted to work with special needs children and from then onwards I started my training. I started working in 2002 as a professional and a consultant with various hospitals and schools before starting Sparsh in 2005.

Why (and how) did you decide to start Sparsh? How long has it been and what have your main challenge areas been till date?After completing my studies, when I started working with various organizations and it was a very disheartening situation where the parents were running from one place to other looking for best therapies and there was no one to guide them correctly. The parents of children with special needs had to go from one therapy centre to the other for different therapies which lead to a lot of time being spent in travelling which was tiring for the parent as well as the child. The need for a therapy centre where all the services (early intervention setup, special education, occupational therapy, speech & language therapy, play & study group therapy and psychological services) can be provided under one roof led to the idea of ‘Sparsh For Children’ ...

As all children with difficulties are different, there is no set plan that needs to be implemented. It is always very challenging to work with each child as one has to come up with new innovative strategies.  This also means that all children would not improve and progress with the same speed and thus striking a balance between our expectations and the parent’s expectations and helping the child move forward is the true challenge. Although many children are able to go to school and are able to manage, many others can't.  Since there are not many institutions which provide vocational training to these children, it becomes difficult for us as well as the parents to decide where the child can fit in after reaching a certain age and skill level.

Part of our work also includes parent counseling as many of the parents remain in denial of the special needs of the child. Few of the parents are often not very serious about the continuity of the therapy and hence are very erratic which in turn has an adverse effect on the child.

There is also a need to change the perception in the society towards children with special needs and instead of pity, society should work towards providing equal opportunities to children with special needs and should not discriminate against them.

There are several NGO's targeted towards children with developmental and different disabilities, yet very low levels of awareness. What could be done to fix this?
There are many steps which have been taken by various organizations, government and people but yet there is a lot that needs to be done. To create a sensitive society, the base needs to be prepared from the beginning by educating and sensitising the children. We have seen many examples like pollution and environment in which the children have created awareness and even forced their parents to adopt change. Similarly, when we sensitize the children towards other children with disabilities, we are sowing the seeds for creating awareness and also a sensitive society for these children. Similarly, there should be a CSR project through which information about various disabilities and the ways we can help them should be provided in all offices. Since the parents or friends of parents who have children with disabilities would be working somewhere or the other, this will help them to create an information pool which can then be passed on through word of mouth.

There are many programmes and help being provided by the government which to my experience have been quite helpful. The need is to advertise and create a system in which the parents can get all the information at a single place. Also, there is a need to create sensitivity in the bureaucratic system so that the parents are also not hassled to go from one place to another for information. 

In this line of work, you probably come about a lot of different kinds of parents: what are some of the common myths or thoughts of these parents that you would like to change?
Very often parents are baffled by the diagnosis and they get confused with technical definitions, people need to be educated that it is not sign from God for their evil doing or some bad karma. Autism can happen to any person and the way forward is to accept it and start therapy so that the child can learn to overcome deficits. Another mistake is to feel pity for a child or adult with autism. They are special people in a few matters but by the end of the day, they are human too. Apart from this, the common mistake of parents is to look for quick learning. Every child irrespective of autism or not has his/her own pace and parents need to understand that. The parents should understand the limitations of the child and should work according to the strengths of the child.

What are the basic points to keep in mind when caring for a child with developmental / different disabilities on a day to day basis?

• Open your hearts and be less hesitant 
• Be patient and understand the child first 
• Understand the temperament of the child, we all have mood swings! Don’t we?  
• Treat them as any other child even if they are different   
• Take timeouts yourself to avoid burnouts
• Share responsibilties

What future plans do you have for the venture and yourself?
Currently we have a single setup which is a constraint in servicing the parents located at a distance from our centre. We are exploring options to bring our product USP to the parents across Delhi/ NCR right at their door steps. We are also exploring options in working with different organizations as a consultant to maximize our reach.

We also wish to create an integrated setup where children with special needs can work along with their regular peers. Vocational training for older age children is another area where we wish to provide children with option to choose different career options as per their strengths and abilities.

Any thoughts for our readers?
Owing to the work I do at Sparsh, I interact, almost on a daily basis, with parents of autistic children. A recurring incident that they all talk about is that moment in public, maybe at a mall or restaurant, where their child is screaming or making unnatural noises because children with autism find it difficult to adjust at a new place and are not able to handle their emotions. Parents in that situation are often met with disapproving stares by people around. It’s at precisely these moments that the stigmatization really hits you. People either look at you with pity or hostility and that needs to change. Instead of shame and isolation, differently abled children need to be given equal opportunities and a chance to lead a normal, happy life.