The recent incident of a mother in Bengaluru causing the death of her disabled child has stirred many reactions and caused a lot of introspection in families with disabled children. But what of the larger community? Did we give it a moment? What can we do? What should we do?
During a conversation in a little cafe in Chennai with some of the early contributors of PatientsEngage, people associated with VidyaSagar, an organisation for children and adults with special needs, the commonly held belief of the Indian family being supportive and caring came under sharp questioning. The diagnosis of a child with disability often ruptures the family unit.
Amidst the inspiring stories of positivity and optimism that we share, we often come across dark, distressing truths - anxiety and depression among parents and siblings, grandparents suggesting abandonment of disabled children, fathers withdrawing or deserting their families, traumatized or overwhelmed siblings. The social milieu does not seem to matter. It could urban-rural, small town-big town, north-south, rich-poor.
This week in Bangalore, in a mind-chilling incident, a mother killed her 7-year-old child with disability by flinging her twice from the top of a building with plans to kill herself next. And as a reminder that this is not a unique phenomenon, last week a 70-year-old man and his 27-year-old daughter with special needs were found dead in Singapore.
It brought forth an outpouring of grief, empathy and anguish amongst the fraternity of special needs families. Read a couple of them and decide what you are going to do next.
Preeti Dixit, a mom with a son initially diagnosed as autistic and now with Mitochondrial Disease, a rare neuro-metabolic condition posted:
It is time to remove the mask and reveal the hard truths about raising a child with special needs. When my son was diagnosed with autism, I felt sad but relieved. I thought that now that I knew what was wrong, I could give my son the help he needed, and everything would be fine. I was told that intensive early intervention would help a lot so I stopped everything and focused on it. I spent every waking moment working with my son to help him get better. One week turned to one month. One month turned to one year. One year turned to five years. My son was still struggling but the thought of giving up never even crossed my mind because I was sure that it was only a matter of time before things would be back to normal.
Then, one day, I got a call from my son's school to come and meet the principal. There she told me that the school couldn't provide the kind of support my son needed anymore and I should look for other options. This, in spite of the fact that my son excelled at academics and always stood first in class. I walked out of that meeting feeling dazed. My mind wasn't able to grasp what was happening. I went into severe depression. I have come a long way since then and learned a lot of hard lessons on the way, but there are still times when all I want to do is curl up and cry.
And Vimal Balachander, a mother of a child with Fragile X Syndrome posted:
A child is supposed to be a 'bundle of joy' and a factor that brings couples together, a 'future' to look forward to. But what if nature bestows a different paradigm and a special child is born?
The pressure that a mother (often the primary caregiver) faces is manifold -
- The child - sometimes speechless, sometimes bed- ridden, sometimes violent, sometimes unfit for schools, untrainable in toiletting, alone and always demanding. The pressure to be a caring and loving parent, inspite of all this.
- The spouse- who may or may not understand the needs of the child and the toll it’s taking on the mother. His presence if understanding is a support, if not understanding is ...?
- The family- yes immediate family are the worst pressure at times with their judgemental views of you, your parenting styles, comparisons.
- Friends- WHO?? No friends around. Lady… you've been deserted. No one calls you for a chat about their MILs, or about a sale to go shopping together, or a coffee to laugh together.
- The sibling- the deep sadness that the mother feels that I have burdened my other child with a load no young shoulder should have to carry. The guilt of not having time for the sibling.
- Doctors, special educators, therapists- who demand you to learn this, do that, try this.. who are we? Hercules?
- Last but not least- another special mom! Who has no filter, and will easily and quickly give you solutions which are unworkable, advice which is so off the point, and simply ignore you when you scream for help!
Before posting one negative comment, think when was the last time you called a special mom and showed a glimmer of friendship? If you ever did even once, am sure it was a rewarding experience. You caught up with the 'real'! If you haven't do it now! It’s never too late!
And don’t be surprised if she wants to talk about films or Mumbai rains and not about her saga of challenges. She needs a break, for heaven’s sakes!!!!!
In trying to understand the mother's behaviour, some of the discussions centred around the causes and some tried to ascribe blame.
Was it a psychotic breakdown?
Was it an altruistic filicide-suicide?
How can a mother do such a thing?
Is the father to blame?
But do these questions really matter?
The crux of the matter is how do we prevent such incidents in future. What needs to change is US, YOU and I, together as a community.
We need to-
Listen, empathise and not judge.
Acknowledge and provide support - not just in terms of special schools and endless therapies but towards a safe future for the person with disability.
Provide a safe and accepting environment so that parents can talk about difficulties of coping without being judged and not be treated like super moms and super dads.
Accept children with different abilities without blaming the parents for developmental delays, disabilities, mental health issues and social inconveniences.
Be open-minded and sensitive to the needs of the family in various environments.
Join hands, make a call and actively build a supportive community.
Are You Ready To Be Part of a Supportive Community? Are you ready to do one act of caring today?
#TogetherWeCanMakeADifference
If you have any suggestions or are ready to help, please contact us here or leave a comment below. This is not a one off incident. We need to create community solutions.
