The relationship that all siblings share is one of the longest and literally lasts a lifetime. Having a sibling with different needs is just like having a neurotypical sibling with multiple ups and downs. There are umpteen advantages of having a sibling with different needs that include being more empathetic, responsible, adaptable, patient, compassionate and resilient. However, it is not uncommon for siblings to feel isolated, anxious, angry, and resentful. Research and anecdotal evidence also support the view that illness and disability effects the lives of all family members.
“Growing up with a sibling with down syndrome, I witnessed the challenges faced by special needs families,” shares Madhavi.
We tried looking for research articles, readings and other material on this subject and we discovered that there was actually not too much to go on. The concept of support groups remains untested in our country. We subsequently decided to conduct group discussions with siblings and parents of children with disabilities in order to gain a deeper understanding. We soon realized that the challenges faced by these siblings were enormous. There was not only scant recognition of these challenges and burdens but also lack of support mechanism for the families. Siblings more often than not felt burdened with having an additional dimension to their lives.
We realized that something had to be done towards enhancing the ‘wellbeing’ of the families with disabled children. We understood that there was an urgent need to build a supportive ecosystem for these families. Research also suggests that support for siblings allows them to feel less isolated and helps them build resilience.
This gave birth to the idea of a ‘sibling club’. The objectives behind the club are: a) To create an enabling and supportive environment, b) To help neurotypical siblings feel less alone and better understood, c) To empower families, d) To strengthen the sibling bond.
The group allows members to:
• Meet other children who have a brother or sister with disability.
• Engage in various relaxing activities with their siblings.
• Share experiences and concerns about their disabled sibling.
• Have fun!
We have conducted two such meetings so far, where siblings have engaged in various fun-filled art activities. Children practiced ‘tie and dye’ art under the ‘expert’supervision. It was a very cathartic experience for the children, families and the trainer alike. We are currently planning Chapter III of the Sibling Club and envisage strengthening this platform further. Join the sibling club for activities, support, but most of all – have fun!!
Written by: Minakshi Dewan
Minakshi Dewan holds a doctoral degree from the Centre for Social Medicine and Community Health, Jawaharlal Nehru University, New Delhi. She has worked with various NGOs after completing her master’s degree from Tata Institute of Social Sciences, Mumbai. She has authored a picture book for children. She is also an expert blogger with Momspresso.