Shaka’s Special Journey

[Originally published August 6, 2010]

Twenty one-year-old Shaka Bowman, who travelled to South Africa as part of an all expense paid prize trip from Digicel for the finals of the FIFA World Cup, has described the experience as “a blast”.

“Yes, I really enjoyed it, except for … being really cold. I just can’t stand it (being cold)!” he explained.

A resident of Sion Hill, St. Vincent and the Grenadines, Shaka accompanied his mother Andrea Bowman on the July 8 to 15, 2010 trip for two she won from the telecommunications company.

Shaka explained that the trip to South Africa was of special significance to him, as South Africa is the homeland of Shaka Zulu, after whom he was named.

“Shaka Zulu was a great war hero and a very wise leader. He did win many armies, and also, he did have lots of shortcomings and hard times when he was a young boy,” said Shaka, explaining what he admired about the man who was king of all the territories in Natal and Southeast Africa in the early 19th century.

The Bowmans were joined in South Africa by 39 other lucky Digicel customers from the Caribbean and Pacific who won the trip in various promotional campaigns held by the telecommunications company.

“They were nice, but I didn’t really have anything in common with them,” Shaka said frankly of the group of Digicel winners.

Socializing doesn’t come easily for Shaka.

He is autistic.

Autism is a developmental disorder that is characterized by impaired development in communication, social interaction, and behaviour.

It is estimated that autism afflicts one out of every 100 to 166 children born, striking boys five times more frequently than girls.

The degree of autism can range from mild to severe. Mildly affected individuals may appear very close to normal. Severely afflicted individuals may have an extreme intellectual disability and be unable to function in almost any setting.

The cause of autism is unknown.

Since writing his CSEC exams in 2009, Shaka has worked as a volunteer assistant at the School for Children with Special Needs (SCSN) in Kingstown, although if you ask him, he will say he is a teacher.

Principal of the SCSN, Naseem Smith-Williams, said Shaka assists with reading and storytelling, something the children eagerly anticipate.

“When he is reading and he gets into a character, it takes over. His tone of voice, his mannerisms, his body language, they take the children to wherever and whatever is happening in the novel at that time. They are spellbound. Even some of the adults are surprised that Shaka is capable of all this,” Smith-Williams said.

Shaka also helps out in the reading room.

“He is responsible for checking out books for the students when they come to borrow books,” Smith-Williams said.

“We have an index system which he has mastered. He also knows where to put which book on which shelf. He is mentally meticulous like that. He has a mental picture where each book came from, even if the child returns it two weeks later,” she explained.

With approximately 1,800 children being born in St. Vincent and the Grenadines each year, it is estimated, based on international statistics, that about 18 of these may be autistic.

However, according to the Statistical Department, in 2007, only four autistic children were enrolled at the SCSN in Kingstown. Figures for enrollment in other schools were not available. The same number, four, are currently enrolled at the school Smith-Williams said.

Smith-Williams is of the view autism is under reported because it is very difficult to diagnose. She said she has observed some children in the regular school system who she thinks may be autistic, though she quickly added, “I am very wary about labelling people’s children.”

At times, Shaka seems to exist in a world of his own. He speaks haltingly and sometimes has difficulty expressing himself.

He remembers factual information easily and has a rich vocabulary, but two-way conversation, especially when nuances and innuendo are used by the other person, poses a challenge.

Even so, Shaka has never been officially diagnosed with autism.

His mother, Andrea, said when he was a child, professionals diagnosed him with hyperactivity and then a non-verbal learning disability on two different occasions.

“These days, the autistic spectrum has widened, and I think professionals today would be less hesitant to label him as such,” she opined.

Andrea said when Shaka was about two years old, she started observing behaviours, which from her training in cognitive and language development, she thought, resembled autism. That prompted her to start researching the syndrome, following which, she sought the help of professionals.

She first turned to local doctors, who told her they had had very little exposure to the condition during their training.

The Bowmans then took Shaka to the United Kingdom, where they were told he was hyperactive, and they should “give him time”.

Andrea, who is an educator and the Headmistress of the Girls’ High School, credits her training in education with helping her to approach Shaka’s challenges in “an investigative manner and working with it.”

“Of course it was difficult, but it was more puzzling than anything else,” she related.

Andrea said it was puzzling because on one hand, Shaka was able to fix jigsaw puzzles with thousands of tiny pieces without looking at the picture on the box, while on the other hand, if you asked him, “Shaka, how are you?”, he would answer: “Shaka, how are you?”, a condition known as echolalia.

“He couldn’t converse with you in the way that you would expect a child of that age to do, yet he was fixing those large puzzles and remembering chunks of information,” Andrea recalled.

She advised parents with children who have disabilities of any kind to read as much as possible, as “knowledge is power.”

Shaka’s father, Lennox, interjected at that point and said many persons had advised them to move to a more developed country to find help for their son.

“One of the better choices we made as a family was to stay here in St. Vincent with Shaka. We had read so much and we understood so much about his problem, that we didn’t think that moving would be helpful,” he said.

Lennox, the general manager of the General Employees Cooperative Credit Union, said he assigned himself a special role in Shaka’s life to help his son develop.

“What my duty was, 50 per cent of the time, was to engage him, to try to pull him out of his own world, even if it meant teasing him, annoying him,” Lennox said.

“His comfort zone is within himself,” Andrea explained.

“We wanted to provide an environment where his routine is well understood, where he would go to regular schools, where he could mix with family, his cousins; this helped him,” Lennox said, and added, “He never had disciplinary problems, so this made it easier for him to be accepted in the ‘normal’ school system.”

Lennox is of the belief that the professionals were hesitant to diagnose him because Shaka is “high functioning”.

“If Shaka doesn’t know the answer to a question, it is because he hasn’t been asked it before or never read about it. He doesn’t forget,” Lennox shared.

Shaka’s favourite books include enclyclopaedia and dictionaries, which he reads like novels.

The Bowmans say sometimes they see sympathy or pity on the faces of people they relate to, but they don’t see Shaka as a burden, but rather a blessing.

“There was a time when we thought that Shaka would never be able to go uptown and buy what he wants. He wrote CXC, he got A+s on his IT exams, he travelled overseas on his own; he has learnt so much and loves learning, which makes it a lot easier for us,” proud dad Lennox said.

Although Shaka is still hyperactive, Andrea said he is aware he has to “calm himself”.

Lennox is of the view that Shaka understands his condition, as he reads about it.

“I also discuss it with him,” Andrea said.

Shaka, though, when asked what it was like to be living with autism, seemed not to want to answer, but finally admitted softly, “It’s very hard; sometimes I really do prefer to be alone.”

He, however, willingly offered advice to other young people challenged by autism: “You shouldn’t be afraid to meet other people. You should try to socialize more and don’t be afraid to be part of their group; see if they would accept you into their group. Just be yourself and don’t try to change who you are.”

The Bowmans also advocate the formation of a local autism support group, in which they are willing to participate fully.

“When you hear it (the diagnosis of autism), I can understand your devastation…, but you have to be strong for the child, and you have to take one day at a time,” Andreas advised.

“Be appreciative of any progress you see and take one day at a time,” Lennox added.

“One of the major problems with autistic children is their inability to express their feelings. You, therefore, have to be honest with them, positive, and make it so that their self-confidence is kept up. Even if they can’t tell you that they were hurt by something, that doesn’t mean that they are not feeling it,” Andrea said.

So what of the future?

Shaka’s dream is to one day own a bookstore, “as I like to read so much.”

His parents’ hopes are much simpler, just for him to be happy and fulfilled.(CK)