Life can be very lonely if you have differently abled child.
Many parents don't have time to seek their own space. The simple pleasures of watching a film in the cinema hall or visiting a salon for a new haircut or simply strolling through the mall for window shopping is the luxury they cannot afford. Differently abled children need lot of attention, some parents are over protective of their children, they will not let them undertake any chores at home for the fear of some accidents.
Such stories and many more were discussed at the workshop on ‘Empowering Parents’ by Gulshan Kavarana on 7th August 2018.
The program started with the brief introduction by one of the parents.
"Gulshan Kavarana is the founding member of SFS (Special Families Support group) a support group for families with children with special needs and the Art Mentor at Mawaheb, an art studio for adults with special needs. It is safe to say that Gulshan’s life changed drastically when her second daughter Zara was born in 1997. Zara has been diagnosed with Dravets Syndrome, a rare form of epilepsy she also in the Autism spectrum which was triggered by a vaccine. When Gulshan found out about her condition she went desperately seeking help and advise from other parents in similar situations, as she was a new resident of Dubai. She felt as though she was drowning in self pity and felt she was the only one going through the stages of acceptance: guilt, denial, self pity, anger, hopelessness and finally, the best stage of all acceptance… Thus SFS was born. SFS or Special Families Support Group, started in 1999 with a dozen families in Gulshan’s living room. The motivation behind the group’s initiation was to bring together and uplift children with special needs and most importantly their families."
Gulshan expressed the fact that nobody is prepared for a special child and when she was faced with the problems of dealing with the daughter who had Dravets Syndrome, she was confused and looked desperately for support. Not finding much information on the net, she invited six families with similar problems and formed a support group. it is then she realised that the support group is like a special close knit family who are more helpful than the doctors, teachers or any other professionals. They are the ones who narrow the gap of loneliness and are supportive in giving advice and solutions from their own experiences. In a support group, parents with older children can give better advise.
Gulshan raised the question about how they felt when they took their child for an outing?
The stories that poured out about the challenges that the parents faced were heart breaking. Parents complained that their children did not get respect in the community and they were always cast aside, about how people stood and stared at their differently abled persons, about their trips at restaurants where people complained about the noise that their children made and how they are forced to leave the restaurant, as the result they hardly ever went out.
During the interaction, many parents then came up with solutions on how to deal with such situations.
One parent suggested that there are two choices to every situation, you can either cry or laugh. She said that her happiness comes first and therefore what she will experience will depend on choices that she makes. She had to make decision and do what she feels is right.
Gulshan stressed on the idea that everybody has right to enjoy their life and that one should not feel guilty of leaving their child at home or with a friend to enjoy some moments with their spouse or with friends. She encouraged parents to meet regularly and socialise freely- organising pot luck lunches, movies or outings.
She believes that support group is one large family who will understand your problems and will be willingly to help you without judging you.
She advised parents to make their children independent so that it will get easier in their later life. They must be given time, space and exposure, to let them grow independently on their own strength and capability. There is need to plan for their future and arrange a residential home (If required) so that sibling do not have to take responsibility of taking care of them all life.
By the end of the workshop the parents were in good spirit and promised to keep in touch with each other.
It ended with game of free expression of introducing each other in Bollywood style and the room was filled with laughter....Parents were asked to stand in a circle facing each other, each person introduced themselves in the most innovative manner…Bollywood style
The workshop by Gulshan Kavarana was very enlightening and she encouraged parents to form a self support group where they could socialise and help each other. Parents returned home with a beautiful smile and must have remained cheerful for the rest of the day.
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