Thread by @KalaiRamea

PSA: Mental health awareness in India, and what can one do when you or your family member is affected.

TW: Suicide, mental illness.

Thread. 1/

As some of you may know, I grew up with a mentally challenged brother. He has 'cerebral palsy with severe mental retardation' (that is the clinical term) from birth. When he was diagnosed at 3 years old we had no guidance or resources as to what to do. 2/

There were quite a bit of resources for physically disabled kids, but not much information on what to do for mentally disabled ones. When he was 6 years or so, he started going to school at 'spastic society'--a school for physically disabled children. That wasn't helping him. 3/

However, from that network, we found a new school that was getting started specifically for mentally challenged kids. He joined there when he was 10 years old and stayed there for some years. 4/

To the school's credit, he did improve a lot. He learned to do simple math, write simple words, and behaviorally, his violent episodes reduced. 5/

They say when a child has special needs in a family, it affects the entire family in a profound way. 6/

Our entire lives revolved around him: we never took vacation when I was little, I was used to reading from taped textbooks torn by him to pieces, my mom skipped meals often to constantly monitor him, my dad sacrificed his dream of doing a PhD to take care of him. 7/

Caregiving a special needs child is extremely stressful. Even though the school he went to was doing a decent effort to train him, IMO, they completely ignored the wellbeing of the parents. 8/

Parents were venting to each other, but even a bit of complaint or frustration was frowned upon. We were told "we should be blessed to take care of such children". 9/

Also, a constant worry haunted us: what would he do in the future? Will he remain a dependant forever? More importantly, what if he survives my parents--can he handle that? 10/

Earlier this year, we came to know M.S. Chellamuthu Trust foundation through a family doctor. This foundation, based out of Madurai, is dedicated to taking care of mentally disabled people. The social workers associated with it have been doing an outstanding job at it. 11/

This is the first place that my parents could see my brother being there for the rest of his life--while learning to be independent. 12/

However what impressed me more than that was their attention to take care of caregivers. Every month they organize meetings to discuss specific topics related to caregivers. They create 'safe spaces' for parents to discuss anything without being judged. 13/

The first meeting my parents attended was on a topic related to 'suicide'. The caregivers were encouraged to share their stories--a few shared about their thoughts on suicide when things got hard. They were not judged by anyone, but rather coping mechanisms were discussed. 14/

This is a HUGE deal for a place like India where mental illness and suicide still have stigma to share to others. To my knowledge, this is the first place I have come across that openly talks about caregivers' stress and wellbeing. 15/

We attended a meeting yesterday where the topic was 'Caregivers' burnout'. They openly discussed how hard it is to take care of a mentally challenged family member, and it's okay to feel frustration. 16/

Even acknowledging that brought out tears from many parents who were constantly told they should not complain as they 'are blessed' to have such special children. 17/

They conducted games for parents. For a moment they were able to forget their worries and have fun! The organizers emphasized that they are not alone in this and that they can feel solidarity by connecting with others. 18/

Had we discovered this institution many years ago, it would have helped us immensely, both mentally and emotionally. 19/

There was a reporter from @the_hindu who wrote up a nice article on yesterday's event. 20/

@the_hindu I just want to write this thread as a PSA to whoever going through similar issues and are in India, and feel like they have hit a block. There is help out there, and please reach out. 21/

@the_hindu My brother (left) and his roommate. He is happier here they take care of him well, and he loves his friends.

THREAD end.

@the_hindu Contact details of the @MSCTRF: msctrust.org M.S. Chellamuthu Trust and Research Foundation.