Wed | Jun 7, 2023

Ordinary kids face extraordinary struggle

Published:Monday | April 12, 2010 | 12:00 AM
Cadaisha at one year old before the mobility and speech problems arose.

Enter the home of Carlton and Patricia (pseudonyms for privacy) and you plunge into a cacophonous orchestra, as their three children trade unintelligible sounds in a bedroom.

The eldest child, eight-year-old Cadaisha, is the most active, but her brother, four-year-old David, knows how to outjostle her for attention from Mom and Dad. Their bright eyes flash back at the camera in consternation - and curiosity - as they wonder at the two strangers visiting their home. The 'wash belly', three-year-old Dishon, who Mom dubs the "Lone Ranger", is spreadeagled in bed, unconcerned with all the hubbub.

At a cursory glance, one might think these were just your average siblings. They love to watch cartoons, gourmandise chicken meals and guzzle down cornmeal porridge like it's going out of style.

But they're not your average kids. The trio can neither walk nor talk.

The siblings suffer from an undetermined debilitating condition which has left them trapped in time.

Turn of events

At birth, Cadaisha seemed quite normal, her parents told The Gleaner, but her mobility regressed as the degenerative illness took hold.

"When Cadaisha born, she was making a milestone at one point. She make 16 steps, she actually start to walk, call 'Mommy', 'Daddy', 'cow', stuff like that, but after a year and three months, she just start slow down," said his father.

They said doctors told them there was no obvious medical reason which indicated that speech and mobility problems would recur, so they had a second child. By the time the problems evident in Cadaisha were observed in David when he was also about 15 months old, Patricia was already well on her way with a third, Dishon.

The children can do little by themselves - except for Cadaisha, who manages, at times, to feed herself with a spoon - but they depend heavily on their parents to move them around, bathe, eat - just about everything.

"They used to creep, but they stop. We hold their hands to walk. If they are creeping now, they stumble; they don't do it as strong as they used to," said Patricia, who is in her first year of part-time teaching studies as she tries to get a job to help her husband.

"Sometimes, I don't know what they want. Sometimes they cry; I don't know what they want," she added.

Takes care of brothers

Though disabled herself, Cadaisha "takes care of them," Patricia told The Gleaner, helping to feed and comfort her brothers when they cry.

The family's distress has been exacerbated by the educational challenges they face, as schools in the area are neither equipped with the support infrastructure nor specialist teaching competence to deal with severely disabled children, their mother said.

"No school has the facility to accommodate that kind of condition," Patricia said.

"I also registered her with Rural Services for Children with Disabilities. They used to send a teacher once per week, but they stopped. I am now doing what I can to help them. There is really no formal schooling."