Kavir, 25, dances beyond challenges

Kavir is a 25-year-old energetic and talented dancer from Couva, who lives with his parents and his sister. Through the years, he attended various schools such as the Pointe-a-Pierre Special School, Lady Hochoy Home in Gasparillo, Goodwill Industries in Port of Spain and the National Centre for Persons with Disabilities in San Fernando.

At present he is being taught at home by his mom, who is focusing on helping him acquire life skills.

Kavir dances with his sister and her dance group, Nritta Dance Company and he hopes to open a cafe to sell puffs one day.

Kavir’s mother spoke about raising a son with Down syndrome in TT.

“Kavir was like any normal child, but his learning style differed from what was perceived as normal by society’s standards. The challenges we faced were not due to him, they were because of the people in the system, with whom I had to interact to ensure his growth and development to become an independent, self-sustained individual. Stumbling blocks and challenges were as a result of the national education and support system; my work environment; the advocacy and empowerment group and peoples’ perception.

"Kavir was unable to gain admission into the general school system and the special schools were few, far and expensive, while at the same time afforded no solution to his learning style for him to move forward.

"Kavir's experience is one where he was physically abused by school personnel at three of the four schools he attended.

"Numerous attempts at getting the authorities to intervene proved futile. Student support service in most instances was unreachable.

"One of the major challenges that prevented me from giving the required care and attention to Kavir was the action of my superiors in the workplace. They were unwilling to facilitate and refused to understand my plight as far as the care of my child is concern.

"The advocacy group which I thought would have aided in bridging the gap and help with accommodation for better service of special-needs individuals was a disappointment. Having joined, I realised it was more of a forum where persons can market their business.

"Taking Kavir out was another challenge because of the way in which people reacted to him. Being very amicable, Kavir would on many occasions walk into a setting and verbally greet people or pay a compliment. There are some who refused to answer and looked at him with scorn.

"If Kavir has a meltdown in public people question my parental style.

"It is actions like these that add to the stress; we always have to be on guard and not allow him to interact, which means he's not free to explore his environment. Notwithstanding, there are persons who do the opposite and comes up to converse. They are few but I am very thankful to them, as it's a learning process for Kavir.

"One of the positive things about covid19 is that he has learnt about social distancing, so the interaction is limited today.”

Kavir’s mom noted that for TT to be a better place for people with Down syndrome, “There must be societal change. With knowledge at our finger tips, one wonders why parents and caregivers are still faced with so many challenges brought on by people who should know better. It should be a priority to implement all the things needed for them to have a better life.”

Despite the challenges, Kavir has come a long way. According to his mother, “While Kavir can interpret, analyse and question decisions he is innocent by nature, so he goes with the flow and accepts what is put forward, so for him challenges may not exist.

"This can also be attributed to the fact that he has no timeline to meet in his day-to-day activity, no tests and so on.

"Initially his challenge was that of having to be in school. His experience at school led him to develop behavioural issues. With him no longer having to be in school the issues have lessened.

"The challenge now is really my challenge – to ensure learning for him takes place without reminding him of school and to try to reverse the behavioural issues, which are deep-seated. This is an ongoing process.

“Kavir has become very independent with many talent skills to be harnessed. He also has a level of confidence and knows what he wants, his likes and dislikes. It is my hope that he will be able to live life to its fullest with health and strength.”

She wants other parents to know that: “It's always a learning process when you have a special needs kid. It's a gift given to you, so appreciate and enjoy your gift. Every child is unique and you, as the parent, have been given the opportunity to make that child blossom.”

Today, as TT joins the rest of the world in celebrating World Down Syndrome Day, I salute everyone with Down syndrome and their parents/families who continue to move forward every day despite the challenges.

Dr Radica Mahase is the founder/director of Support Autism T&T