Sharing experiences from Parents of Karishma Kannan
It was sometime in July 2018 when we were invited to present Karishma’s art work at a corporate event in Mumbai. Karishma and my wife Kalpana accompanied me. I had then just retired from corporate life wanting to spend more time in social enterprise activities and therefore, I did not care to have a business card of my own. When I met people, I had to repeatedly let them know that I did not have a business card to share.
Seeing my predicament for some time, the next time someone asked me for my card, Karishma came forward and extended her card (she has her own business card in the name of Studio 21up), with a handshake saying “this is my card, my name is Karishma Kannan and Kannan is my father” pointing at me.
This gesture was very spontaneous and appropriate with a tinge of courage and humility. To me this response demonstrated empowerment. My wife, Kalpana and me were excited and overwhelmed by this gesture.
How did we get to this point in our life…?
This is the story of Karishma, my daughter, 26-year-old, born with a condition called Down Syndrome. Today she is an artist and has her own studio- ‘Studio 21up’, where she also curates’ programs of recreation, fitness and wellbeing for young adults with DS.
This is our journey from weakness to strength…
What is my definition for my special child?
When a special child is born in our family we ask God, Why me God? We are unable to accept the situation and we go through the process of;
Our definition of our special child depends on how long we remain in the early stages of this process.
We have to move from shock to acceptance quickly. This will accelerate the process towards Empowerment.
We need to ask ourselves, are we mere care takers of our special child or are we going beyond the diagnosis and the labels?
Our mental definition will determine the next steps we will take in empowering ourselves and thereby empowering our child and going above and beyond.
We (Kalpana and I) asked God, why me!!! as the chosen ones to bring up the special child. The conscious shift from the question mark ‘?’ to an exclamation ‘!’ transformed rest of our journey into miracles unfolding… In our case, we not only ‘Accepted’ our daughter’s condition quite early
Once we reach Acceptance, we need to get into appropriate action mode and create a conducive atmosphere for the child’s all-round development at every stage. We need to set realistic goals and celebrate every small achievement. This will have a positive spiral effect influencing the child and other members of the family & the immediate circle of influence.
Believe in yourself, Empower yourself first.
Empowerment starts first in our minds. As parents we need to empower ourselves first.
We took this as our responsibility – We always feel that we are the chosen ones to take care of her. At this stage, we empowered & educated ourselves through counselling and other help from professionals and experts in the field.
Starting with early intervention, we gave her the best learning platform. We were not constrained by the learning limitations arising out of her condition.
As she grew up, we were lucky to meet the right people at the right time, who gave us the right perspective. We went with the flow, with open minds and good faith…
In 2007, my profession took us to Vietnam. We lived there for 8 years.
Our experience in Vietnam was initially a challenge in many ways which we turned around as opportunities. By then Karishma was 17 years and this move had uprooted her from a known friendly world to an entirely new environment. This required adjusting to major changes in lifestyle, culture, food habits, language and her social life. Our early steps to empower her, helped us to sail thru this change and Karishma surprised us with her ability to adapt to this change.
At this stage we could not provide her appropriate schooling and thus we experimented and exposed her to several activities like swimming, bowling, pottery, photography, dance, working in a coffee shop.
By now she was gracefully growing into a well-rounded young adult.
This is when we uncovered her skill to paint! She found her expression through painting acrylic on canvas.
With over 100 paintings to her credit in just 4 years, we were challenged with what to do with these paintings. It was Karishma’s idea and decision to support the special children in Vietnam. This idea lead to her solo painting exhibitions and charity auction, donating all the proceeds for charities.
She would participate in choosing the special schools, going with us to the various activities for donation including 4 infant heart surgeries. She took keen interest to follow up and engage with the families of the beneficiaries.
As parents we realized thru this experience, that it is a cycle of positive reinforcement. Firstly, by empowering ourselves we learnt to empower our child. She in turn has empowered many in the process.
At many occasions Karishma was our sounding board.
When Karishma’s sibling Kajol (younger by 3 years and who was at this stage preparing for her higher studies) was going thru the dilemma of whether to go overseas for her higher studies or not,
it was Karishma, who helped in the final decision.
In one of our family meetings she said,
“Life must go on…it is her career and future. Let her go”.
With great power comes great responsibility
Many times, parents are constrained by what their immediate family and friends think about special needs children and their societal acceptance.
We need to understand that it is upon us and our responsibility to educate them and build awareness thereby once again empowering our circle of influence. We need to be their first advocates in building social awareness.
With Karishma, we did not allow ourselves to feel limited by how our immediate family and friends looked at her. We empowered ourselves by communicating with them, educating them and taking them along with us. Today, she is a compassionate and caring member of the family and every member of the family respect and appreciate her for who she is!
We were not limited by the situation that she could not go to a normal school or pursue her education in the traditional way.
We saw her immense potential in arts, dance – she participated in performing arts, Shiamak Dawars programs, represented NGO’s to felicitate celebrities/annual events, sports (she plays bowling and is pursuing swimming). She is a caring host at home – She can make perfectly round roti’s, she will put many others to shame!
And above all, she has taught us un-conditional love.
What after us???
This is a haunting question to all parents with special needs children.
Like a good leader who always prepares a second line to carry on the baton, we must examine multiple options to ensure a safe world for our children after us.
Integrating special needs children with senior citizens in a community like retirement homes is a new concept being tried out. This will require solid governance and structure to ensure that the intended purpose is served. We have today organizations like Covai Care, Coimbatore who are boldly experimenting this model.
While there is no perfect answer to this question, various solutions are still a work in process. In our opinion, parents need to identify like- minded and right-minded group of other parents to explore various opportunities.
What got you here won’t get you there
Through our experiences, we realize we have to remain receptive and open to exploring various opportunities.
We need not remain in our self-created imaginary comfort zones and thereby deprive our children of their opportunity to explore and find their calling.
We know that at every stage we have to raise the bar…and our children will show us the way at every stage.
What got you here won’t get you there.
We cannot stop trying. Eg. Karishma tried swimming at a very early stage. She could not pursue and gave up. Now again she has got back to swimming and she has taken it like a fish to water!
She has her dreams and looks forward to our support to make it happen…
Studio 21up which is also her art gallery, is one such dream. When she is not painting in her studio, she also helps her mother – Kalpana, to curate recreation & fitness programs and workshops for special needs adults.
Karishma has just done her first solo art exhibition at the Karnataka Chithrakala Parishatha, Bengaluru on the 26th/27th o f November. Her work received very good response and the print media also carried an article on her.
Her next project is a coffee shop – where she dreams of employing other special young adults like her.
As parents we feel blessed that she is a role model and an inspiration to many others. In Karishma’s words, “Life is beautiful and we must move on…”