The Birth of SAATH

The Autism News | Special Guest

By Harshita Mahajan

A couple of years back I lived on a deserted island called “My- child- is- disabled- and- can- I- hide- him- and- myself- too” .It was a lonely and tough place to live in…occasionally I would bump into other denizens of similar terrains, when I dropped or picked up my son from school. We would exchange a few words and then get back to our isolation. There were one or two people that I did talk to a little more frequently, but I had no real wish to expand my circle of similarly afflicted persons or even the ones who had normal lives. Having become a loner I didn’t want to share the woes of other parents who had special needs children, and I found it difficult to relate at all to people who had normal children.

One day I got a message from another parent “R” that they were planning a meeting of parents of children with special needs. I didn’t really want to go for the meeting, but after a couple of calls came in I caved in and decided to go with the flow. Something inside me made me want to believe that perhaps a parent group of likeminded individuals might be the way forward in establishing infrastructure for my son’s future. The meeting was surprisingly well attended by about 50 people , however the rhetoric was much as expected. Parents were expressing their frustration with the existing systems, their apprehensions as regards what the future held for our children, some abortive ideas were discussed about the way forward and the meeting was closed. We each paid a minor amount to cover the costs of refreshments and hired chairs and went on our way. I was convinced that very little would be achieved from being associated with this group, as everyone had different agendas. I was sure that almost everyone felt the same as I did.

I was not surprised to receive a mail from “R” thanking us for attending. However, I was amazed to get a very detailed mail two days later comprising of the minutes of the meeting from another parent “S”. A few days later I found I had been added to a Yahoo group formed for the Parent Support Group. The group was called SAATH which means “together” in Hindi which is our native tongue in India. Discussions on the E-group did expose the diversity in everyone’s thought processes…but I noticed that whenever parents “S” or “R” made a comment people seemed to accept what they had to say. I tried to participate in the discussions but everything i said was shot down by other parents.

I retreated back to my “island” for a bit. Satisfied that I was probably accurate in my initial judgement I didn’t bother attending the next meeting. I heard that the attendance of the second meeting was maybe a quarter of the first meeting. Feeling sad and a little guilty I allowed myself to be persuaded to attend the third meeting. The demise of the parent support group SAATH was clear and imminent as only about five of us attended this meeting. And yet…this was a path breaking meeting, a turning point for me, personally, and for the group as a whole. We discussed in detail all the things we wanted for our children, we brainstormed how to take things forward. “S” quickly penned the minutes of the most productive meeting till date and sent off the email to the group, omitting to mention the number of people who were actually present!

In the meantime “S” used her persuasive abilities to get a newspaper journalist to cover an informal meeting that five of us had, along with our children in the park. We all revelled in giving our media bites and we were rewarded with an article in the newspaper the very next day. We celebrated this article in the E-group and suddenly other parents became more participative. I began to see belief in people. Belief that things can actually happen. Belief that we can celebrate our children and that society can be made to celebrate them with us. I had also started believing this and consequently began taking an active role in the parent support group.

“S” again managed to secure a commitment from Parenting magazine to give our parents two pages every month to write about their experiences relating to bringing up a special needs child. I became a regular contributor as I enjoyed writing immensely.

Our group started slowly growing, steadily through word of mouth. Lonely parents seeking to escape from their islands…needing information, emotional support and encouragement …seeking a community where they were accepted and welcomed and their children were exulted.

We were very careful to make everything in the group participative and voluntary. Meetings were scheduled on a monthly basis. At each meeting we arranged speakers – doctors, speech therapists, occupational therapists etc These speakers would conduct a talk for our members in their areas of expertise. No financial consideration for hosting a meeting was ever exchanged again.

We hosted our first social event three months after the formation of the group. It was a picnic for our children in conjunction with an organisation that worked with underprivileged children. It was an immensely successful and enjoyable event and not a penny was charged from any family. Our children played tirelessly with the neurotypical underprivileged children and it was magical to see the symbiosis…the acceptance from both sides. Members were asked to contribute any food or other item in appropriate quantities and we coordinated the effort to ensure a varied, healthy and plentiful menu. We continued our tryst with the media and of course our picnic was given very positive coverage in the news. The next thing we worked on was organising a “yoga for special needs” training workshop, through a friend of mine who was teaching yoga to special needs children in Hong Kong. After that, a music therapy workshop was organised.

The group has grown from strength to strength. Members initially strangers, bonded and became friends and then… closer than family. We have now over 150 families on board..We have organised workshops for Music Therapy, GFCF baking, Cranio Sacral therapy, Behavior management and many other vital areas. We exchange information, swap notes on therapists, share our joys, our childrens’ achievements , our frustrations and give each other moral support and guidance.

We have been careful to keep true to our founding principles, to celebrate our children with each other and the rest of the world. To ensure that parents contribute to the group in any way they see fit…from taking the initiative in organising a workshop to designing a website. It is indeed amazing to see people with different talents and capabilities contribute in a variety of ways.

As a community we espouse positivity and send this message out to everyone we are in contact with…It is infectious and gives individual members the strength to take on any challenges they are dealing with.

Obviously we no longer live on our deserted islands, we live in a world where there is plenty, and we share what we can, whether it is knowledge, toys, teaching tools, books or even just advice. The joy of giving the positive energy to another parent to help their child is enough in repayment. As the group grows bigger we find our synergies and strength rising, We have members who are doctors, cooks, technocrats, teachers, journalists, lawyers in fact in every walk of life…and everyone has a contribution to make.

Visit Saath’s Website

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