Amitabh Sharma, Features Coordinator

A student of the STEP Centre enjoying the warm sunshine. - photos by Amitabh Sharma/Features Coordinator

In this age of instant gratification, time moves gingerly at The School for Therapy, Education and Parenting of children with multiple disabilities (STEP) Centre. In the heart of Kingston, away from the hustle and bustle of Liguanea, the centre is a one of a kind initiative in Jamaica.

"This organisation was started by parents and is run by the parents," said Hilary Sherlock, principal, STEP Centre."The children here face multiple problems, they cannot be categorised."

Redefining success

The institution has 20 students, most of them with cerebral palsy or rare genetic syndromes; they have to be assisted in many ways, from moving around in a wheelchair to eating their meals. But they have forged a bond among themselves, happiness written large on their faces. Deep inside though, they know the roadblocks.

"Why god made me like this?" said Gigiher eyes blank. She wants to run around, play with her friends, sing and dance. She tries her best to do whatever she can from the confines of her wheelchair.

Sherlock said that STEP Centre accepts children irrespective of their condition. "They have been excluded from other schools," she said. "We like to take the children young, this is necessary for effective intervention."

Given the situation, the progress among the students is often not visible, at times there is no progress at all. There is a stereotypical parameter that needs to be addressed.

"One of the greatest challenges we face is expectations of the parents," said Andrea Cameron, physical therapist.

"Here," added Cameron, "in many instances the change is not evident."

"The expectation of the parents is for us to make their child normal," the physical therapist said, "which at certain times is not possible given the severity of the damage to the brain."

For the staff of the centre each little movement is special, which is evident from the cries of joy from the children. "We have to redefine success," Cameron said, "when we talk of success stories."

Challenges

"There are cases where we cannot do anything," said Cameron. "One of the parameters that we can measure success is the fact that they belong here," she said, "they want to be here."

"This is perhaps the only place where these children can socialise," said Sherlock," to be among friends and express their feelings."

Most of the students at the STEP Centre are unable to find words or form proper sentences, the feelings are expressed by a gleam in the eye or a cry of joy or anger.

"They communicate more and also it helps them to unlock what is inside of them," said Cameron. "They have to feel the acceptance, which they find here."

Each day comes with a new set of challenges and opportunities for the children and staff of the Centre. "We set goals for each child," informed Cameron, "the goals are different for each child."

But the parents should not have any false hopes. "We have to understand we cannot change anything in some cases," she said "... nobody can."

Cameron and Sherlock, said that there are no parameters that can be drawn to chart the 'progress' of a child. "We cannot work miracles," Cameron said. "But there have been instances where some children have been able to walk."

"They have a right to a place," she added. "A place where they belong."

Giving strength

The counsellor and the teachers at the STEP Centre are entrusted with a job that not only requires patience but is riddled with challenges. They are also under constant pressure from the parents. "Having a child with disability is any parent's nightmare," said Cameron. "There is a pressure on the parents and from them also."

"Some children want to improve,"said Cameron, "very badly."

She pointed to Nathan, "He could not get up when he came six years back, now he is able to stand up." His condition, she informed was not because of cerebral palsy, but the result of a rare genetic disorder.

Sherlock said that they like to forge a bonding, "It is part of the programme to bring life's experiences to the children," she said. "Parents interact with each other and give strength to each other."

Driving sustainability

The centre is funded by various organisations. As part of major fund-raising they sell greeting cards. Over the past three years, the centre has generated a successful fund-raising venture through the sale of Christmas Cards, with annual sales surpassing J$800,000.

STEP Centre has been recently funded by the Canada Fund, an initiative of the Canadian government, to develop a website. "This is an e-commerce initiative," said Sherlock. "We want to broaden the outlook and explore new avenues and new markets."

Day-to-day expenses

Sherlock added that maintaining the day-to-day expenses was still a challenge and is looking for people who could assist. "Running cost is a major concern for us," she said.

The STEP was founded in 1993 and is managed by parents and associated professionals. STEP has purchased a new property and is currently fund-raising to develop the site. The mandate for 2008 includes expansion of the greeting card business, new grant funding for special projects, expansion of the outreach activities and linkages with other special services.

The STEP Centre is located at 167 Old Hope Road, St Andrew. Phone: 977-3720, email: thestepcentre@yahoo.com

(names have been changed on request).