Centre for Disability and Rehabilitation, a community based organisation in Wakiso recently started cerebral, angular borne paternity, hydrocephalus therapy to help children living with disabilities and their parents to cope with reality
At 11 years, Richard Lucky would be in Primary Six like his most of age mates. However, he is struggling in baby class at a kindergarten because of what his mother calls ‘abnormal stubbornness.’
He also takes long to grasp what is taught in class.
Abnormal stubbornness is a state where a person or child behaves in a violent manner.
According to his mother Joyce Baako, Lucky, the second born among four siblings is overzealous, violent and gets angry quickly, a condition which requires him to stay with his mother all the time and or isolated at home.
Because of the boy’s condition, Baako says she can hardly engage in any productive work to generate income.
“I gave birth to a normal child but at seven months, my son (Lucky) suffered from a fever which affected his sight prompting doctors to operate on him. However, the operation did not go as planned as his brain became affected,” says Baako.
Despite the medication given by doctors, Baako says the condition only got worse.
“He beats up fellow children and almost all the time becomes violent if not controlled. I need to be near him all the time.” She adds that her husband abandoned the family because of their son’s condition.
Tearfully, Baako adds, “I do not work because of my son’s condition and I have no means of generating income for the family.”
She spends a few hours vending merchandise on Kampala streets to fend for the family since she has to rush back home to be with her son. “I pleaded with teachers to allow him to stay at school near home, playing just to make him happy and calm although it is risky.”
Like Baako, Oliver Nakato, 28, a mother of two, cannot engage in any productive venture because of the hustle she goes through to cater for her five-year-old son, Peter Mukose.
Mukose who would be in nursery school, can neither sit, support his neck nor hold anything due to a disability he suffered from at four months.
“Doctors told me that my son has a brain injury which affects his feeding habits. I feed him on fluids and soft foods but this has to be special meal, which requires a lot of money that we cannot raise,” says Nakato.
She narrates that her son was born normal but fell sick and the body weakened.
“Since then, Mukose’s neck became weak, he cannot do anything on his own be it sitting or even turning while lying down. He needs to be carried.”
Nakato cannot work because of her son’s problem as he needs special attention. Sometimes, she says she is not in position to get Mukose’s medication due to lack of money.
“Most of the children he was with, having the same problem are now walking but Mukose failed due to lack of funds to meet expenses for physio-therapy as recommended by doctors,” Nakato says.
The two families are part of more than 500 beneficiaries of the home-based rehabilitation approach by Centre for Disability and Rehabilitation (CDR).
The centre equips parents with occupational and nutritional skills to help their disabled children. Parents are also taught how to home school children.
“We provide enterprise skills such as how to make crafts, candles, liquid soap, wall hangings, using waste to generate income,” says Alex Asiimwe, the CDR director in charge of community based rehabilitation. “And when they make these items, we market for them and bring back the proceeds to help them in special needs like meals.”
The centre, based at Lusanja- Kiteezi in Wakiso District was built due to the need for an innovative approach to relieve parents of going for institutional rehabilitation services which are costly.
Dr Justine Nakimuli Kigozi, a CDR trustee, attributes disability to genetic composition, social causes like accidents and lack of care during sicknesses like malaria.
“Some of these diseases are preventable but it is up to the parents to prevent such occurrences that can cause disabilities,” she says.
About 13 per cent of disabilities among children are detected at birth but more than 20,000 disabilities occur thereafter. Dr Kigozi attributes these to a lack of income generation means, among others.
CDR has started an arrangement to provide such parents with skills to earn an income that can support them in caring for their children with disabilities.
Asiimwe says they have started an awareness campaign to support parents of such children to stand against stigma and discrimination.
“Discrimination of children with disabilities starts from families. This calls for a need to empower families with different skills on how to handle these children through training, counselling and follow ups. We also provide possible medication to such children,” he explains.