Shlokability - A Dad's Diary: 2024

This is my 3^rd year participating in IDPD Bloghop. I couldn’t agree more with Sakshi Varma about the central theme for this Bloghop – “Disability inclusion isn’t just a concept—it’s a daily commitment to ensuring that everyone, regardless of ability, has the opportunity to thrive and contribute meaningfully.”

Raising a special child has personally helped me to become sensitive to differently-abled community. Shlok is my 15-yr son with Down's syndrome who has changed my world view profoundly. For me, SHLOK stands for–Sense of purpose, Hope, Love, Objectivity and most importantly, Kindness. Last couple of years I had shared my thoughts and experiences on how caring for Shlok has also pushed me towards financial literacy and better financial planning for my family.

This time around, I am thinking of slightly different take...At the time of knowing Shlok’s diagnosis right after his birth, we were having lot of questions, anxieties and insecurities…. But once I accepted him whole-heartedly ( it took good 7-8 years), journey itself became my IKIGAI…He was the trigger for us to return back to India…He was prime reason for me to get very serious in financial markets …In a way, because him, I have taken some tough decisions in my life …and in a way, I got a state of FLOW in my work and in my life J

While I have been pondering about my own experience about INCLUSION over last 15 years, it’s a quite a mixed bag. The journey is filled with wide spectrum of experiences which includes western view as we were able to get best of early intervention for first 3 years in USA then moved few years in Tier 3/4 city in India and finally settling in a big city like Pune…We could experience explicit structures facilitating inclusion in western worlds and in effect the society is feels more accepting of a special individuals….In contrast to that, in India there is relatively less government support, yet the empathy one could get from extended family, care-givers and support networks is a big plus…

All these factors affect child’s development in different proportions at various points of time…And perhaps experiences about getting access to all these things could very well frame an individual’s perspective about inclusion. Every individual’s situation is unique and hence the experience could be subjective of sorts…And I believe strongly in Theodore Roosevelt’s quote – “Do what you can, with what you have, where you are” ….

As a finance professional, I could say it is more like an asset allocation (I have mentioned the percentages for each of these areas as we see it for Shlok J) ….As a special parent, we are bestowed with better awareness about our children’s growth and steps that would help him/her towards achieving maximum potential for the child …. Of course, it is easier said than done!

My experience with inclusion has checkered record.... When Shlok was about 6-7 years, we were debating whether to go for inclusive main-stream school or special school. After doing thorough inquiry, it was quite evident that “Right to Education” has long way to go in India even though it is surely a good start in right direction. Though we are very happy that Shlok found an anchor in the form of Phoenix school, a nice special school in Pune. Similarly, our experience at government hospital was very distressing while we were applying for disability certificate…So we in India is far behind in “structure-based inclusion” …

On the other hand, support groups and NGO’s are very kind and helpful in many ways. For example, Ms. Diptiie Acharya is a garment manufacturer in Pune. She has helped Shlok & few specially-abled individuals with training of basic tasks even though it meant she had to spare her personal time out of her busy schedule. Similarly, “Lend A Hand India” is an NGO is Pune focusing on vocational skill-building in teenagers. Shlok participated in half a dozen short courses in carpentry, gardening, cooking, baking etc. and we always found all the trainers always going extra mile to help Shlok learn new skill. I could see “empathy-based inclusion” being followed in spirit and in action….

All said and done, as parents of special child, we have to keep working towards more equitable and inclusive world around us…It is a long winding journey as it may take decades to come … I remember reading “Life Goes On” – a book about Chris Burke and how his parents had to face similar difficulties even in USA back in 1970’s and 1980’s …But he went on to become a successful actor on American television…. Life really goes on…So I don't mind to hum along...

थोड़ा है, थोड़े की ज़रूरत है … ज़िन्दगी फिर भी यहाँ ख़ूबसूरत है…

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In this bloghop, 30+ friends have contributed their views, experiences and recommendations to make our world a bit more INCLUSIVE (Please check out other posts the link mentioned down below) …. Our roles are very much carved for the life as “Champions of Inclusion” …and hopefully, that will bring a bit more PEACE as we go on….on & on….

ॐ पूर्णमदः पूर्णमिदं पूर्णात्पूर्णमुदच्यते ।
पूर्णस्य पूर्णमादाय पूर्णमेवावशिष्यते ॥
ॐ शांतिः शांतिः शांतिः ॥