Originally published in the Trinidad Express , January 07, 2018
I am an artist by profession although I only started considering myself one about 8 years ago despite being in the profession since age seventeen. The way I see and think about things is not the way most people see and think about things.
I think that is what makes me a bit different from most in this business. My different perspective is probably the key to my success in my role as a father to Kye, my fourteen year old autistic son.
I met Stacy, Kye’s mom, and our relationship felt like a true fairy tale.
We knew each other casually through different work endeavours and that led to a romantic relationship and within only two short months, Stacy confessed, “I could see myself married to you.” That became an actuality a year later, and two years later, Kye was born in May 2003. It was at this point that the fairy tale took an upsetting turn.
Just two weeks after Kye’s birth, a large growth was discovered in Stacy’s stomach that surgery was required to remove. Eight months later, the cancer had returned and another surgery was performed. Despite her failing health, Stacy remained a devoted mother and wife and never once failed in her duties to love and care for Kye and I.
She sought to live her life as much as she could and appreciate each day as it came. Another two surgeries were performed, but Stacy knew and had made peace with her fate. At that time, Kye was approximately eighteen months old and Stacy longed to hear the word “mommy” before she passed.
This was when she started remarking to me that it seemed Kye’s speech was not developing as it should. Stacy died on March 24th 2005 at home surrounded by close family providing her with love as she left us. Kye was just a few weeks short of his second birthday.
Most people would understandably crumble under this turn of events, but I knew that my son was depending on me. You hear stories of childbirth, but you never understand until you become a parent. One of the hardest moments of my life was the day after Stacy’s passing, seeing our son looking all around the house for her.
At that point, notwithstanding a strong extended family, I became a single parent. As more time passed, Kye’s challenges were becoming more noticeable. He was almost three years old and still saying only isolated words with little structure. Through the intervention of Karin Hatch, Child Psychologist and Donnella Rodriguez, Speech Language Pathologist, Kye was confirmed as autistic.
As he continued to grow, he was fortunate to have an extremely strong support system. A dedicated father, grandparents who idolise him and the availability of therapy that is not always financially viable for many families. Kye attended the L.I.F.E. Centre and later progressed to the Montessori Academy.
Many years later I was able to find a partner in someone new, Alana, who became a strong mothering figure in his life and she was the first person to witness a huge milestone for him, when he spoke his first full sentence, after many years of therapy and continued encouragement.
Like many other parents of children with special needs one of my greatest fears is what happens to my child when I die? But the progress that he has made in his life brings me hope and I fully believe that Kye is capable of functioning independently. Autistics minds just see things differently and in a highly analytical way than many typical children and adults. I believe that this is the ability that has allowed my son to prosper.
To the parents now experiencing this for the first time and for those yet to come I want to encourage you to accept and let your child be who they are. The world is a liar. The world tells you things are supposed to be a certain way but it isn’t.
Don’t listen to what the world tells you your child is supposed to be. Let them be who they are and know that there is nothing “wrong” with your child just because they function differently. The truth is that we and the wider society need to accept the responsibility of enabling them. Autistic super powers and all, they will shine when the time is right.
The production of the Lions segment of the Lioness Project series, highlighting the experiences of ten men in the disability field, is supported by the Cause an Effect Organisation, Autism Spirit, Peake Petroleum, the Massy Foundation and A Very Special Disabilities Forum.