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- Raising a Son With Down’s Syndrome — A Father’s Story
Trevor Ramikie sees more in his son than his developmental delays.
“I love him, not just because he is my son, but because of his character, his attributes, all of that,” he says, rubbing his shoulders against 26-year-old Zane.
Zane is affected by Down’s syndrome – a congenital disorder arising from chromosome defect, resulting in intellectual impairment and physical abnormalities.
Zane is hardly coherent and speaks little, but he understands more than what he is able to say, according to his father.
Playing football, and even completing a three-quarter lap in a swimming pool approximately 25-metre-long, is among his list of hobbies.
Sharing his story of what it is like raising a child with Down’s syndrome, Mr. Ramikie tells JIS NEWS that he was as happy as any father would when he saw his son for the first time.
But deep down he knew something was not quite right with him medically.
“We suspected there was something different just looking at him, but he was always smiling so we were hopeful,” he shares.
As time progressed, the developmental delays became evident and later a diagnosis was made.
“At that stage in my life, life had thrown so many things at me that I learned not only to accept them but move on quickly; so I accepted it,” the father shares when asked how he dealt with the news.
His wife, however, took the news a bit harder.
“She was slightly more concerned and had questions such as, ‘why did God do this?’ It didn’t break her faith but there were doubts,” Mr. Ramikie recalls.
He says despite the odds they decided they would give their son the best life they possibly could, dismissing any thoughts of placing him in State care.
At the age of one Zane was enrolled in an early childhood stimulation programme in Kingston with children of normal intellectual ability.
“One of the things we were encouraged to do is allow him to go along with his age group until he could not keep up anymore, and so we did just that.”
“It’s like he had an innate consciousness that he was behind and he made the effort to catch up by practising things on his own,” he notes.
Revealing that he and his wife were already raising two girls before Zane came in the picture, Mr. Ramikie says he took on most of the responsibility when it came to caring for their intellectually disabled son.
“I did not get into taking care of my daughters as much as my wife did, so when he came I knew I had to step up and help out more with him,” he says.
School of Hope
At the age of seven, Zane was enrolled at the Ronnie Lopez School of Hope and stayed there until he was 21.
Mr. Ramikie recounts that his son made even greater progress while at the school and believes this was the result of him feeling more accepted among children with whom he shared similar challenges.
“He learned a lot and was able to gain some level of independence. He would go to the tuck shop by himself and even learned to handle money to a certain extent,” he notes with pride.
Since leaving school Zane spends most of his time at home and the bond between father and son has even grown stronger.
In fact, Mr. Ramikie says his son, helps to keep him grounded not just spiritually but otherwise.
“We have a good relationship. In the mornings we walk out together, and sometimes we wrestle each other; he loves that,” he says.
“He never goes to his bed without saying his prayers and never eats without saying his grace. On Saturday nights for example, instead of preparing for church the next day, I might want to watch a movie and he would come and say ‘daddy, it’s time to read’. I couldn’t keep up with that discipline without him,” he adds while laughing.
Mr. Ramikie’s main quest now is to have his son reach a place where he is more independent, especially when it comes to earning his own money.
The father is now looking at how he can channel his son’s passion for screen printing into a source of income for him.
The Gift of Acceptance
Meanwhile, he advises that one of the greatest gift parents and the society, in general, can give a child living with a disability is the gift of acceptance.
“Children like these, they know when they are not accepted and it can affect them. Our society needs to learn to accept people with different challenges and see them as people who have certain gifts just like us,” he says.
He notes also that while raising a disabled child can be financially draining, there are institutions available that can make the journey less onerous. These Include the Jamaica Down’s Syndrome Foundation, as well as, the Ministry of Labour and Social Security’s Early Stimulation Programme.
“It is difficult but not as difficult as it seems. I could have placed him in other expensive private schools but I chose to place him almost in the public system and trained him. That hasn’t been a bad thing; he has changed my life for the better.”
Today (March 21) is being observed as World Down’s syndrome day.
-By Nedburn Thaffe (email@example.com)