Children with intellectual disabilities are probably the developing world’s most underserved population. Rejected and stigmatized by societies that have a hard time understanding physical let alone intellectual disabilities, some don’t even have birth certificates and live in total obscurity. Special Olympics and Catholic Relief are shining a light on these special kids.
Sometimes you might not be able to put your finger on it. Or maybe in your particular case, it is more obvious.
Imagine coming to the slow realization that something is different about your child. He’s not walking. She’s not talking when she should already. The baby isn’t responding according to the ‘milestones’ that mark the path of development for a healthy child.
Now imagine you are faced with that but you are a single mom living in one of Africa’s biggest slums. After Kibera, Kawangware holds the unenviable title as Kenya’s and probably all of East Africa’s second biggest slum. While not as crammed as Kibera, it is another sea of metal shacks, eaten away by rust and warped by time and the elements. Sometimes there is a shock of happy color where an enterprising school or shop owner has spruced up the corrugated sheets with a coat of paint. Mostly, it’s gray and brown.
Mary Kioko, 39, is the single mother of Brian, who just turned nine this month. They were attending the Tuesday session of the Special Olympics Young Athletes Program in Kawangware, which Mary says has provided her a lifeline in many ways.
Normally she spends her days criss-crossing Nairobi to ensure that she gets Brian the care and the schooling that he needs. But it is costly. And his medicine is costly. And if it rains, rather than risk her son taking ill and having added medical expenses, she shells out money she doesn’t have to take a taxi – a luxury she cannot afford. But it is cheaper than possibly having to take care of Brian if he gets sick.
Torch-bearers Thanks to a nine-month pilot project, a test run of sorts, Mary can now take Brian to one of four Early Childhood Development centers in Kawangware, and it is free. This one is a royal blue spot of sunshine called the Small Angels Educational Centre, which serves this largely Muslim section of the slum. All are welcome, however, and there is an eclectic mix of mostly mothers, but fathers, grandmothers and community health volunteers as well, and many of them are Christian. They find comfort in one another’s company, they share their struggles and they cry and laugh. The athletes, meanwhile, jump hurdles on an obstacle course, kick a soccer ball around and skip rope. They laugh like crazy.
When Brian was 11 months old, Mary said, he went into seizures. He was eventually diagnosed with cerebral palsy, after a lengthy stay in several hospitals including therapy sessions. When Brian was discharged, he was also sent home with an impressive list of medications he’d have to take, including medicines to keep his seizures in check. More recently, doctors have indicated that Brian has also started to show signs of autism.
In addition to paying rent for her home (yes, rents exist in the slums), Mary has to pay rent for a small beauty supplies shop she is struggling to get off the ground, school fees that are higher than most since she sends Brian to a ‘special school’ that is equipped to meet his needs, about 50 dollars’ worth in medications, as well as diapers and bus fares back and forth to school and to various care centers. Her expenses verge close to 100 dollars per month. In Kawangware, most people make one or two dollars per day.
By and large, she does it all on her own. Her sister, who used to help with all the expenses, passed away last year. She owned the small supermarket where Mary also pitched in to earn money. But when she died, Mary’s brother-in-law abruptly closed up shop and Mary found herself jobless, with almost no possibility of working given her obligations in caring for her son.
Accosted on the streets Typically, and according to tradition in many communities, children with intellectual disabilities are seen as a source of witchcraft or that they have been cursed because their mothers are witches. So the mothers too are socially excluded and ostracized. “What happened with this kid?” Mary said some people used to ask her when Brian was a baby. She would be on the bus or on the streets, and everyone had something to say. “You never hear one positive thing about these kids,” she explains. “You take him into the deepest place in the Thika Forest. You put him there, and you run. You leave him there,” people told her. But she says that just her son’s smile is enough to keep her going, along with the love of her own supportive mother back in her village in eastern Kenya. That smile, she says, just takes her breath away.
Improving by leaps and bounds With the specific expertise of Special Olympics in working with children with intellectual disabilities, CRS and the Adventist Center for Care and Support (ACCS), CRS’ main partner in running Early Childhood Development centers for the most marginalized children in Kawangware, have witnessed vast improvements in some children in just a few months.
“In February, Timothy couldn’t even sit up,” said Anne Muchiri, a social worker with Special Olympics Kenya. Four-year-old Timothy Netia was also diagnosed with cerebral palsy, only as a result of his being so sick that he ended up in the hospital, where he was treated simultaneously for both meningitis and pneumonia. A ‘well-wisher’ – the father’s employer – paid for the medical care. “Now he is our greatest joy. He wants to stand all the time,” says Anne. Timothy, like any child learning to walk, is constantly trying to push himself up on anything he can lean on for support. He latches onto his mother’s or his Special Olympics caregiver’s hands and insists on being walked around.
Much of the improvement is the result of simply being exposed to other children and interacting with them on a regular basis. The children are stimulated by the physical and social contact, and they grow and learn.
Existing not even on paper “Many of these children wouldn’t even have birth certificates,” said Leia Isanhart, CRS Senior Technical Advisor on health at the CRS headquarters in Baltimore. “Without a birth certificate, you basically don’t exist. These children especially lack access to essential health care and schooling without official recognition that they exist.”
In these extremely impoverished conditions, mothers might tie their special needs child at home while they go out to earn a few dollars a day taking on small chores. Those children might not even leave the house nearly ever, because of the social stigma associated with them. The fathers often leave, because the child is cursed or in the case of Brian’s father, because he couldn’t face the thought of losing a terminally-ill child. And the mothers have to provide for their families somehow.
The Special Olympics partnership with CRS is part of a larger early childhood development program which originally targeted children living with and affected by HIV in Tanzania, Malawi and Kenya. But what came to light as teams regularly went house to house to register vulnerable children for services was that there was this totally excluded population of children, who because of physical, social and economic constraints, had almost no access to services at all.
The program revolves around ensuring access to the same basic services available to other children. Specifically, the main activities include:
positive parenting training and education, including raising awareness about the important role of the father and the relationship between mother and father;
training and support for volunteers in caring for vulnerable children with intellectual disabilities
establishment and improvement of Early Childhood Development (ECD) centers so they can better accommodate children with special needs
home visits to further reinforce the messages being learned at the ECD centers
mother support groups training on recognizing and addressing maternal depression
creating small vegetable gardens to ensure good nutrition, especially important to children’s mental and physical health and development
Mary says she hopes God will one day repay her for all her hard work. As a Christian, she says, she believes that God one day always rewards people for their work. She wants to slowly grow her beauty supplies shop, and she takes strength from that hope. And she draws strength from a mother who supports her all the way.
“My mother said to me: ‘My daughter, God gives special gifts to special people. So you are special to have been given this child. Just take care.”
“And I find strength.”