Ministry of Labour & Social Security

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Having a child with a disability can be devastating for some parents, but for one mother, it is an experience she would never trade for anything in the world.

Pauline Richards-Williams from Lincoln in Manchester, is a mother of two daughters and a son, Bencian Campbell, who was born on June 11, 1988 with Cornelia De Lange Syndrome, a genetic disorder that affects physical and mental development.

Children with the syndrome are small at birth and remain small compared to children of the same age. They will have slow or very slow development, usually associated with significant learning problems that are of variable severity. Some children have psychological and behavioural problems including autistic-like features and self injury.

Physical features, which may be recognized shortly after birth, include thin eyebrows that meet at midline, long eyelashes, a small upturned nose and the lips are thin and positioned downwards.

Mrs. Richards-Williams, who is Assistant Supervisor for Caregivers at the Caribbean Christian Centre for the Deaf (CCCD) in Knockpatrick, tells JIS News that the syndrome was diagnosed by doctors at the six-week clinic. "When I went with him to the six weeks clinic the doctors realized that his weight was less than his birth weight," she says.

While the news was difficult at first, the mother, who says she loves her children dearly, decided to do all she could to help her special child. "It is challenging because when he was much younger, I use to take him to the paediatrician twice or three times per month," she explains. "Sometimes it was hard finding the money," she adds.

She continues "he was taken there for his check-ups and they would give him tonics to build his body because it was so tiny, and they would see how much improvement he had made".

Because of his delayed motor development, Bencian did not start to walk until he was four years old. The paediatrician recommended that he be sent to school at age five, as even though he may not learn, he would be able to socialize with other children. "That has really helped," Mrs. Richards-Williams says.

Bencian had nine years of schooling at the 3D Pre-School (Dedicated to the Development of the Disabled) and Fairfield Basic School but his mother says that he has not been to a primary school because he will not be able to function in a regular school setting. She has tried to enroll him in the School of Hope.

Now 18-years old, Mrs. Richards-Williams says that her son has improved a lot, even though he looks like an eight-year old. "He has good reasoning ability but he doesn't write, so he mostly focuses on the television, which he learns from". She boasts that "I can write a note and give him to take to the shop and he will bring back the things to me. If it's one item, I can tell him to go and get it, but if it is three items or more, he might not remember, so I write that".

She informs further that, "what I am doing now, is I'm trying to get a computer for him, so that he can learn to write because he's not able to grasp the pencil since his fingers are not normal in length, which is as a result of the disability".

Bencian has also done some voice training so he sounds more like a teenager. She notes that "if I take him to you, you may say he is seven or eight, but when he starts talking you'll realize that he is a teenager because his voice has began to change".

There have also been physical improvements, Mrs. Richards-Williams says. "When he began walking, because the disability affects the nerve, his head rested on his shoulders so he would have to look up to see you. But now he can look straight at you because his head is straight since he got therapy at 3Ds pre-school, plus with the medication the paediatrician prescribed".

Despite his disability, life for Bencian has been a happy one. His mother says that "he is happy now and I am happy with him also". She says that "Bencian is very close to his siblings, especially his older sister, who is a college graduate. The younger daughter is a high school student. "The only difference between him and his sisters is that he doesn't write," she says.

Mrs. Richards-Williams however, points to the need for "the relevant authorities to provide more educational institutions for disabled persons and to train more persons, or search for the persons who have been trained, to work in that area". She adds "it doesn't make any sense to send your child to a school, which claims to be a 'special ed' and the teachers are not trained to deal with the children".

To parents and loved ones with disabled children, the caring mother advises that "we should love them and take care of them. Make sure that they are immunized and if they are on medication, ensure that they get their medication on time".

"Just love them, give them all the love that you can because that's what most disabled persons don't get," she adds, while urging that they not be locked away.

The loving mother, who is studying at the Mandeville Caregivers Institute to become a health care assistant, says, "I want my son to achieve as much as he can in life. I know that he will not be able to get a university degree . or a high school diploma, but I want to see him achieving whatever he can".

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