Knowledge first
PARENTS and guardians of children with special needs were recently educated on how to help aid their development, during the first in a series of specially crafted workshops held in the capital.
The workshop, held at Emmanuel Christian Academy, was the brainchild of Christine Staple-Ebanks, who had herself gone in search of answers after her son Nathan was diagnosed with cerebral palsy.
She felt the workshops would provide much-needed answers to the many parents who were at a loss as to how to manage the range of developmental delays their children faced.
Staple-Ebanks has since hailed the first workshop as a success, noting the range of positive comments she had received from the participants, some of whom had journeyed from as far away as Montego Bay and Linstead to get the information on offer.
“One nursery school administrator called back to say that the workshop has helped her to make sense of some of the behaviour she sees daily in her classrooms, and even from her own children. And through the information gleaned, she can now move to address them,” Staple-Ebanks told the Sunday Observer.
Held under the theme, “Building a Brighter Future for our Nation’s Special Needs Children”, the workshop looked at the more common childhood disabilities, early symptoms, causes and management options available locally.
It is this information that Staple-Ebanks said had helped many.
“A lot of them have called to say they were seeing behaviours in the children they couldn’t peg, only that they knew something was happening,” she said. “One pre-school teacher was saying when the overview was being done at the workshop on different conditions and signs and characteristics were being highlighted, she was just writing down the names of children in her classroom who were demonstrating these behaviours.”
Staple-Ebanks noted that the workshop had also helped to identify the needs of participants in the management of their children’s needs. The second workshop, to be held in August, will seek to address some of these needs.
“It will deal specifically with evaluation and we will be having some specialists who will sit with their child for half an hour to see where they are,” she said.
Staple-Ebanks is also moving to set up a cerebral palsy foundation, which will address information issues, as well as source equipment overseas for those people who cannot afford these things.
“I am working along with Whole Life Ministries to put some support in place so children can get a better intervention because now that government has said they are moving to have all special needs children enrolled in school by September 2008, they have put the responsibility on the parents to make sure the proper seating and other equipment needed is in place to manage the child. These equipment are ghastly expensive,” she said.
Staple-Ebanks added that she will also establish a website, seeking international medical advice and expertise, which is usually not readily available locally.
According to the National Policy for Persons with Disabilities, the number of children between 0 and 19 years of age with moderate to severe disabilities in Jamaica ranges between 130,000 and 260,000 island wide. These disabilities include cerebral palsy, down syndrome, autism, dyslexia, attention deficit disorder (ADHD), learning disabilities, behavioural disorder, mental disorders and other developmental delays.
Statistics also show that only approximately 2.8 per cent of our nation’s school age children with disabilities are enrolled in special programmes.
Staple-Ebanks said she found out that the majority of these children are at a disadvantage for rehabilitation because their conditions have neither been properly diagnosed, nor have they been exposed to an intervention programme.
“Most of these children age chronologically, but are never given the opportunity to work towards even the most basic of independence,” she said.
She added that that for most families faced with the care of such children, there is a feeling of hopelessness and despair as information and support are limited.
Health care cost for children with special needs, Staple-Ebanks said, is another big issue, as the private services available are expensive and the waiting lists long.
“Caring for a special child is tough and cannot be done by the parents alone. The old adage “it takes a village to raise a child” is very fitting, as these families need the support of their community to survive,” she said. “Let us look beyond the disability and remember that children with special needs are children too and as such they have the right to be given the same opportunity as any other child to maximise their potential intellectually, spiritually and physically.”
Last month’s workshop sessions, meanwhile, were presented by agencies and private organisations involved in the care and management of children with special needs. They included Early Childhood Stimulation Unit, 3-D Projects for Early Childhood Stimulation, Rural Services for Children with Disabilities, Caribbean Hearing Centre and a pre-taped presentation from Dr Maureen Samms-Vaughn, chairman of the Early Childhood Commission.