This is the first in a series on Autism featuring Jerrilee Alicia Arthur and her son Keanu. Alicia will by writing all other installments in this series. The following was first published on 17 December 2011.
Georgetown, Guyana (Guyana Chronicle) – FROM the time he was two years old, Keanu began displaying certain inexplicable behaviours. For example, he seemed to have problems in speaking, managing only two words: ‘Mommy’ and ‘Daddy’. Relatives would say, “But Keanu is a big boy; how come he is unable to say more than mommy and/or daddy?” Alicia would dismiss their queries by saying, “Oh, he’ll get over it.”
Secretly, she was perplexed by this development, but dismissed her misgivings with the firmly held view that it was normal for his age. Then there was his behaviour: At home, he was always climbing, jumping off the chairs and making the house look like a hurricane had passed through, with the cushions being lined up along the floor, and toys scattered all over the place.
Sometimes he would dismantle his toys, and when he found he couldn’t reassemble them, he would throw a tantrum, screaming, stomping, and hitting the walls with his fists whilst resisting every attempt to be placated. He would thereafter retire to the quietest corner of the house and sit curled up, rocking back and forth, silent tears streaming down his cheeks.
At playschool, he would keep to himself, paying no attention to what was happening around him, but doing things he liked, like singing or playing roly-poly, in total oblivion to his surroundings.
Mentally retarded?
The playschool teacher concluded that he was mentally retarded, but Alicia took umbrage at this conclusion, pointing out that in one day, her son had learnt to name the days of the week, and the very next day had learnt the names of the months of the year, and had proudly recited them for her when he returned home.
However, during that time, when she asked him how his day at school was, he couldn’t answer. But it was when he started nursery school that she began to take serious note of what was happening.
At nursery school, he would lie on the floor, kicking up and throwing terrible tantrums. He would eat with neither spoon nor fork, but would employ his bare hands in that endeavour.
Moreover, he would completely ignore the teacher’s instructions. If she gave him artwork, like painting, to do, he would instead do his own thing with the brush, smearing his face and hands.
For the teacher to get him to do as instructed, she had to hold his hand and move it. He would occasionally take off his socks and shoes, and try to strip himself naked. He would not play with the other children, but would push them away whenever they approached him.
Classic symptoms
Deeply disturbed at Keanu’s deteriorating behaviour, Alicia decided to investigate.
She has since found that her four-year-old son, who is generally a pleasant child, has been displaying the classic symptoms of autism.
Speaking to the Chronicle, she detailed her emotional journey from puzzlement to exasperation and sometimes anger at the child, to the point of understanding and providing emotional support for him, despite his sometimes outlandish behaviour; and of her great resolve to help him stay one step ahead of mental disability one day at a time.
Autism has been described as a brain development disorder that has no cure. It is mainly found in boys, but exists to a lesser extent in girls. Resulting from an almost divine combination of circumstances, Alicia has been able to find the Guyana Greenheart Autistic Society (GGAS), and she is now happy to get their support in treating with Keanu’s condition.
The GGAS is currently located at the Ptolemy Reid Polio Rehabilitation Centre on Carmichael Street in South Cummingsburg.
Alicia said that prior to coming to the conclusion that her son was autistic, she had no idea that help was so close at hand. “I had no idea that GGAS existed,” she said. “It was shortly after my conclusions that I read of the work of this Society in a newspaper article published in the Chronicle earlier this month.”
She has since been receiving advice from GGAS, and has consequently adopted a totally different response to her son. “It is not his fault. Prior to my knowing about autism, I used to be angry at him. I would bathe him, dress him up, and for a minute or two, when my back is turned, he would take off his clothes and be back in the bathroom. I used to yell at him, sometimes even spank him. But all of that is now over; I understand now, and I would hug him and say, ‘I know there is a problem, Keanu, but you and I will work it out together; you are gonna be fine.’”
The young mother says that apart from the careful nurturing of her son, her new mission in life is to educate people about what she currently knows about the disorder. Her aim is to enable parents and relatives to understand what to look for in order to be able to detect autism in those close to them, and to develop the correct approach to helping them cope.
“How many children drop out of school possibly because of autism? How many are deviant because of undetected autism? There may be many. We need to be able to find out and reach out to them; try to help them,” she said.
The Society
Apart from GGAS, there are no autism specialists in Guyana. Alicia is now a staunch supporter of the programmes and policies of the organization, which seeks to help the autistic.
The volunteers of the GGAS currently face a problem with accommodation, since the Society has to move from its current location at Carmichael Street by month-end. Another location has been identified, but the building itself is in need of repairs and sprucing up.
Alicia is one of the new members, and she is among those pushing for funds to help in the relocation endeavour. She is urging members of the public to make contact with executive members of GGAS, and to make donations of cash and/or kind towards this absolutely worthy end.
Meanwhile, the daily challenges continue for her. Keanu likes to climb, and seems oblivious of the fact that he could hurt himself. His hyperactivity poses many challenges. He throws a tantrum as fiercely as ever, but Alicia says her new approach to his behaviour, based on her understanding of his disability, provides a few bright moments.
“I hug him; I tell him what a great guy he is, and I try to get as much audio-visual learning materials as I can, since he seems to learn more easily this way. And he responds favourably more often now than before.”
Another bright spot in the home is that despite his disability, Keanu has a special talent: He excels at singing, and can hold a note as flawlessly as any professional singer. His favourite song is the Whitney Houston ballad, ‘I Will Always Love You’.
Said Alicia:
“The thing I have learnt about autism is that it does not have a face; you cannot look at a child and determine from his appearance that he is autistic. Keanu is as pleasant a child as ever, until the disability takes over his behaviour.”
Alicia will be enrolling Keanu at the Guyana Greenheart Autistic Society School in January, 2012. There, he can get more sympathetic and professional attention than is currently available in the general school system. Credits Guyana Chronicle/Clifford Stanley
