The ins and outs of caring for a child with disability

By Indrawattie Natram

FIVE-year-old Jaden Hariparashad of Jacklow, Upper Pomeroon River in Region Two was born with a rare condition which has prevented him from socialising with other children. This condition, however, has not deterred him from achieving an education. Jaden currently attends the Jacklow Primary School in the Pomeroon River.

During an interview with Pepperpot Magazine, little Jaden said he loves reading. He was very jolly and alert throughout the interview. Jaden also said that he loves his school.

Both parents of Jaden, Shelly and Jetendra Hariprashad said that their child was born with hydrocephalus. Also called “water in the brain”, hydrocephalus is a condition where there is an abnormal buildup of CSF (cerebrospinal fluid) in the cavities (ventricles) of the brain. The build-up is often caused by an obstruction that prevents proper fluid drainage. Hydrocephalus patients may experience a steady growth in the head size, convulsions and brain damage.

Symptoms include headaches, vomiting, blurred vision, cognitive problems and walking difficulties.

The outlook for a patient with hydrocephalus depends mainly on how quickly the condition is diagnosed and treated, and whether there are any underlying disorders.
Jaden’s parents said that they sought medical advice from various practitioners but were told that options were limited; Jaden would either outgrow the condition or he would have to live with it.

Having accepted that fact, the parents said their love grew unconditionally for their only child. Shelly who is a teacher said that she is happy that her child can attend school and be in the company of children. She said his positivity to life is amazing and he is eager every morning to attend school and to mingle amongst the children.

Jetendra said that he has accepted that his child is a “special needs” child and as such special attention is given to him. “We went to a lot of doctors and hospitals. We have tried but we are hoping that a miracle would happen one day, and our only child can be able to run and play like a normal child,” he said.
The father said that his son cannot walk nor can he digest solid food. He is being fed soups and porridge.

“My son makes me happy, he cannot balance because his feet are twisted facing each other. We have to lift him most of the time. We have to strain his soup to mostly liquid, but we find joy in doing this. Jaden is a pleasant soul,” the father said.

Jetendra said that he only attends school half day and the other half day he spends with his grandmother. He is currently receiving physiotherapy at the Suddie Public Hospital, and according to the parents, he has shown signs of balancing.

On October 19, Jaden was fortunate to be amongst some other special needs children in Region Two who benefited from an outreach conducted by the Ministry of Education through NCERD. The Special Education Needs (SEN) Clinic was hosted in order to access children who are suspected to have a special education need and those who are at risk.

National SEN Officer attached to NCERD, Miss Savvi Hopkinson said that there is help available to teachers who have special needs children in their classrooms, as well as the children’s parents. Hopkinson said that a special assessment is conducted with the children and based on the results special recommendations are done to assist them and their parents.

Hopkinson said that often times the group of children may have excellent sight and hearing but are pejoratively labelled as “dull”, “backwards”, “dunce” and even “slow”. She, therefore, calls on parents not to be embarrassed but to work and give support to the child.
Regional Education Officer for Region Two Miss Nicola Matthews said that the Ministry of Education through NCERD has a special SEN Unit which caters for such children. She said that the SEN clinic was the first of its kind to be held in Region Two on October 19. Miss Matthews said that Region Two has a total of 28 special need children. She is hoping that the Region will establish its own Special Need Centre to provide for the children.