WHEN Christine Staple-Ebanks’ fourth child, Nathan, was diagnosed with cerebral palsy, she never gave in to her despair. Instead, she went on a journey to discover more about his illness, not only to inform herself, but to help the many parents in Jamaica who are now struggling to meet the special needs of their children with disabilities.

Staple-Ebanks said she wanted to help more parents who may feel a sense of hopelessness in not knowing how to care for these children, as she recalled how lost she was at first when the answers were not immediately forthcoming from her doctors.

Staple-Ebanks recalled that it was five months into the pregnancy, during a routine ultrasound, that the doctor became very quiet.

When she questioned the doctor, Staple-Ebanks recalled that she was told Nathan was suspected of having congenital diaphragmatic hernia – an illness which the doctor said he had only read about in books. The incidence of occurrence is 1 in 4,500 boys.

She was immediately placed on a watch programme, and when Nathan was born, he was taken to the Intensive Care Unit (ICU) where he underwent major surgery.

What Staple-Ebanks was not told at that time, was that once a child experiences a trauma, either at birth or shortly thereafter, he or she is at risk for developmental delays.

“I was not told what signs to look for, neither was I referred to an early stimulation programme for the child,” she said.

Staple-Ebanks said she later learnt that in developed countries, once a baby has been to the ICU, then they are automatically, upon release, referred to an early stimulation programme in the event there is trouble with developmental milestones thereafter.

Soon enough, Staple-Ebanks found out – but only through curiosity – that something was wrong with her child. At about five months, she said she noticed that he was not propping himself up, sitting up or rolling over.

“I brought it to the attention of the paediatrician, who suggested that Nathan was too young to be diagnosed, and that he must have just been delayed. The doctor suggested that we watch it for another period,” she recalled.

After observing Nathan’s development for nine months, Staple-Ebanks said the doctor said he suspected the child had cerebral palsy.

At nine months old, Nathan was placed in a weekly programme, but Staple-Ebanks said she still was not getting the desired results.

“I found out that he was not developing the way I thought he should, and this was not only a mother’s pride,” she said.

“I was looking at what he was getting, knowing the heart of the child, the motivation level and enthusiasm and I just wasn’t seeing the corresponding thing,” she continued.

After watching his development until he was two years old, Staple-Ebanks decided to draw upon her background as a researcher. She immediately started finding answers on the Internet to the many questions she had been grappling with.

She quit her job as corporate event manager at Cable & Wireless Jamaica, and took on researching her son’s illness on a full-time basis. She also took over the care of her son full-time, as she believed his caregiver could not provide Nathan with all that he needed.

“At first, I didn’t even know the questions to ask, and a lot of it was what I had stumbled upon. I have since found out that if you don’t know the right questions to ask, you don’t get the right answers,” she said.

Fortunately, Staple-Ebanks was able to gauge Nathan’s development using the experience she had gathered from raising three other children.

“Other persons, who are not as observant, would easily miss some of the signs, and that is why 99 per cent of the children with disabilities have not been properly screened or diagnosed in this country. And that is frightening,” she said.

It was this information which led Staple-Ebanks to take her son to a rehabilitation hospital in the United Sates, which had a dedicated paediatric rehabilitation programme, specifically to seek further treatment.

“I was convinced that there was more to this thing than I was seeing, and so I met with a developmental paediatrician, who diagnosed him and identified the proper condition.

She said this was particularly important, as she later learnt that cerebral palsy is usually a mix of syndromes, and the wrong diagnosis could affect treatment.

Staple-Ebanks said for the first time, the doctors sat with her and her husband, Robert, and their three other children, and with the help of graphs and pictures showed the family what they needed to do for Nathan.

“She showed us where he was, where he needed to be and the steps to get him there. And that was when I had the first ray of hope that my son was rehabitable,” she recalled.

Staple-Ebanks said the doctors also told the family that Nathan’s chances of rehabilitation were one hundred per cent, and had he gotten that early intervention, he would be walking today at age three.

She said since then, Nathan has shown signs of improvement as he is a bright child, with above average intelligence.

As with persons affected by cerebral palsy, Nathan has an impairment of motor movements, because the signal being sent between the brain and the muscle is confused.

But Staple-Ebanks said with rehabilitation, her son will now walk and will have functional recovery.

“He will be able to play, attend regular schools, and function well into that environment; and be able to live a normal life,” said a beaming Staple-Ebanks.

But while Staple-Ebanks could have been contented with the information she was now armed with, she said she had the burning desire to help those parents who will never get the opportunity to access the level of treatment she received overseas.

“When I sat in the Rehabilitation centre in Miami, I was in tears most of the time, because when I looked at how they broke it down, I said ‘I need to talk to other parents about this’,” she told the Sunday Observer.

She said they showed her a lot of things which she took for granted, such as how to hold her son. “They showed basic things like how to carry him, because they say I have to encourage him to sit up. I shouldn’t have him lying down all the time,” she explained.

Upon her return to Jamaica, Staple-Ebanks said she moved him to a regular prep school, and immediately offered to do some training with the teachers at that institution.

She said the teachers were very interested in learning more about working with special children and, recognising that she was not trained as an early childhood educator, Staple-Ebanks sought the assistance of the government agencies – Early Childhood Stimulation Unit and Rural Services for Children with Disability.

“While doing this, it occurred to me, why limit it to that school ? Why not open it up to other parents and other schools?” she said.

This gave birth to the special needs workshop, which will be held at the Emmanuel Christian Academy, at 2 Olivier Road in Kingston on Saturday, June 16, for parents, teachers and caregivers of special needs children.

Staple-Ebanks said since she started publicising the workshop, she discovered that the need for such a forum was more than she anticipated.

“The need is overwhelming because initially, when I started the workshop, it was supposed to have been for handling children with cerebral palsy, but as people began to respond they would say my child has autism or my child has this or that, so I had to open it up to other disabilities,” she said.

Speakers will include Dr Georgia Beavers, an audiologist at the Caribbean Hearing Centre, Gemma Gibbon, a child development psychologist from London, Rhia-Simone Birch, a physical therapist with the Rural Services For Children with Disabilities and Antonicia Gunter-Gayle, director of the Early Stimulation Unit, and Carol Williams, a special educator for the deaf and hearing impaired.