Adesh and Nandita Kisten
Both run their own small businesses
Age of parents:
Age: 9 years
Is this your only child? No. 2 other boys.
Diagnosis of child: He has myoclonic epilepsy and a very weak immune system.
What are the biggest challenges facing your child on a daily basis?
Shariq’s development is extremely delayed and sporadic. Seizures continue to set him back somewhat. It is heart-breaking to watch him struggle with the things we take for granted – but inspiring and humbling to see him persevere and progress. Currently, he still battles with toilet training, communication, emotional outbursts, instant gratification, irrational fear of shiny floors/dogs and a dulled sense of danger. He is unable to meaningfully participate in many activities with his brothers such as cycling, skating or playing many games as he is not at the requisite level – this is frustrating for him, but he tries his best with a big smile and enthusiasm.
What are the happiest moments you have with your child on a daily basis?
Shariq is always smiling, happy and full of love, ready to share a big hug and kiss at a drop of a hat. He is kind and unselfish. Every moment with this child is precious – he is so excited and animated about the simplest things we take for granted - bath time, seeing the school bus, waffles, colours, birthday parties, Wimpy and talking to his grandparents. His beautiful smile, big heart and gentle soul give us the most joy every day…
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
Yes. He’s made us stronger as a couple. We do have our moments though, where it becomes a bit overwhelming and at times like these we’ve learned to lean towards each other.
What has your child taught you about yourself, both positively and negatively?
To appreciate our family and never take the little things for granted. We are always so caught up with the rat race of life that you don’t even think that certain things can happen to you and then suddenly you are faced with a curve ball – your patience, tolerance and inner strength are all questioned. The responsibility of caring for a special needs child is sometimes overwhelming – are we doing enough, are we doing the right things for him? We are in this for the long haul, the journey is slow but it’s nevertheless our journey, so we embrace it and take each day as it comes.
Are your family and friends supportive?
Yes. Although we are 600kms away from most of our family and friends, they are loving and supportive. Being the loving little boy that he is, he is always readily accepted and encouraged by everyone he comes into contact with.
What has made the biggest difference to your child’s quality of life?
In mid-2011, we relocated to Johannesburg, primarily so that he could attend Unity College. Although this meant leaving our entire extended family behind and having no support structure up here, this was the best thing for Shariq. With the help of the most amazing teachers, therapists and helpers at Unity College, he is thriving and making the most amazing progress. Shariq is happier, more confident, and feels a sense of belonging and self-worth. His brothers also see him in a more positive light – he is an example to us all as he persistently and cheerfully overcomes his challenges.
What is your dream for your child?
It is a constant worry but our dream is for him to reach his full potential and to be able to lead an “independent” and “meaningful” life, contributing positively to society in his own special way.