Hadija Murekatete, a resident of Nyamirambo Sector, is a mother of six children. The youngest, 16, has a mental disability that her mother noticed a month-and-a-half after birth.

"The first signs I noticed were that my baby could not breathe well, got constant convulsions, high body temperatures. His tongue was often sticking out and he dripped a lot of saliva, I thought that it was a minor health problem that could be treated, Murekatete said.

"I visited a number of hospitals but the condition worsened overtime instead. As a mother who had other children, at each stage of development I noticed something wrong; no walking, no talking, no eating. Sometimes people could advise me to kill or abandon him in the bush. At times I felt totally desperate and grieved but decided to take care of him despite the disability.”

Later, Murekatete was advised to take her child to Ndera Neuro-Psychiatric Hospital, convinced by the doctors that her child’s condition was a disability that needed constant care.

When her child turned three years old, Murekatete heard of the centre ‘Espoir Umwana Nkabandi’ and decided to take her disabled child to the facility to try with different therapies.

"When I arrived at the centre, I saw cases more severe than mine and was relieved that I was not alone and needed not to despair. I decided to take my son there every day and they offered him physiotherapy. He was given muscles and bones exercises so he could learn to walk and other mental and educative care and treatment. At home, I also followed whatever advice we were given,” she said.

Changes in behaviour, life

A few years down the road when the child was seven years old, Murekatete says she noticed tremendous changes; he started to speak, could walk, and also recognise his mother and other siblings.

Now aged 16, Murekatete said the boy has achieved a lot of mental and physical development thanks to care and treatment he received from caregivers at Espoir Umwana Nkabandi centre.

"Though he does not walk steadily and requires a lot of support, I’m glad he can do some household chores now. He can talk on phone. He is learning tailoring at the centre and some other life skills,” the mother said.

Murekatete’s testimony illustrates how children with mental or intellectual disability require special care to be able to thrive, develop and, to some extent, achieve self-reliance.

Drawing from own experience, Murekatete counsels parents passing through similar experience to stop hiding their disabled kids but take them where they can meet others and get helped to develop as independent individuals.

Beltilde Mukakarangwa , the coordinator of Espoir Umwana Nkabandi centre, said they care for 126 children with mental disabilities countrywide.

She argues that their role in development of children with mental disabilities cannot be overlooked because that kind of disability requires professional constant care to make them reach a certain level of mental and physical development though they can’t reach at 100 per cent recovery.

"Mental disability often comes with physical disability, so the patients need physiotherapy to make them walk or use hands normally. We also offer them occupational therapy that gives hands-on skills rehabilitation. This is done overtime and not anyone can do it. We also train them socially to make them behave ethically, socialise with others, among others,” Mukakarangwa said.

Apart from taking care of the children, the centre also takes time to train parents on basic home care, offering them counseling sessions to cope with the situation.

Welarisi Habiyaremye, a father whose three children have mental disability, also brought them to the centre and two of them stay in boarding care.

With three children afflicted by mental ailment, Habiyaremye could not cope without meeting other parents at the centre for mutual support as well as professional counselling.

The salient role of special needs care

Although it has been alleged that some child support centres, including orphanages, are run on selfish ‘for-profit’ interests of the proprietors, Espoir Umwana Nkabandi centre appears to enjoy sound ratings among parents with children at the facility.

The centre is located in Nyamirambo Sector in Nyarugenge District, Kigali.

Recently, the parliamentary Standing Committee on Unity, Human Rights and the fight against Genocide said that children with extreme disabilities require full time professional care.

The lawmakers called for a special budget to support legitimate disabled children’s institutions and close those that were turned into business.

To this, Esperance Nyirasafari, the minister for gender and family promotion, pledged her.

"We are going to look into institutions that have deteriorated and probably remove the children and take them somewhere else as a precaution,” she said.

Mukakarangwa, the proprietor of Umwana Nkabandi centre, also believes that some people are driven by profit motive to open up such facilities.

She hopes the decision to withdraw children from such centres will be done carefully so that affected children get well catered for in new institutions.

Pascal Shogolo, of Ndera de Jour Humura, that also takes care of children with mental disability, said children with mental disabilities need special care in institutions and some who have graduated have the ability to do some handcrafts.

He calls on the Government to consider supporting such children to get startup capital to practice what they learn with constant supervision and follow up.editorial@newtimes.co.rw