The gorgeous smiling faces in public of parents with children who require special attention cover strong battles in a society full of stigma, stereotypes and economic hurdles.
Parents and teachers say that handling the stigma remains the hardest challenge since most of the perpetrators are mature people they know and have to meet frequently as they go about their lives.
Monica Wambui, a mother of a 14-year-old girl with cerebral palsy, told the Star, “I can say our main problem has been the stigma. It is wrong for parents to tell their children not to play with those who require special attention. They should understand that those who require special attention are human beings and can’t harm them.”
Monica's daughter suffered meningitis at seven months and ended up with cerebral palsy. As a result, she has exaggerated reflexes, floppy or rigid limbs and involuntary motions.
This has led to slow growth, learning challenges, speech delay, speech disorder or stuttering, difficulty walking and difficulty with bodily movements, leaving her as a person with a disability.
Other problems are muscle rigidity, permanent shortening of the muscle, problems with coordination, muscle weakness and muscle spasms.
“When I am walking with her in the wheelchair everyone is turning to look at me even those who have known us for ten years. It is bad,” she said.
“A number of strangers also want to give us money, thinking that we are beggars.”
Monica said her daughter cannot stay alone and she has to take her to school and back at home.
“Imagine only one hairdresser accepts to make her. Others will tell you that they are busy or not available.”
We only hear of government cash transfers in media. In real sense, we don't get any funds or support from the government
Monica adds that parents also have to cater for people who will take care of the children at school since the government has failed to take responsibility.
"We all agree that the teachers alone cannot manage those children who require special attention. The teachers require additional support staff so they can concentrate on studies," she said.
FINANCIAL DRAIN
Monica added that they don't access any funds from the government allocated to persons with disabilities (PWDs).
"We only hear of government cash transfers in media. In real sense, we don't get any funds or support from the government," she said.
The special medical requirements have pushed a number of families into an economic crisis.
“First, parents don’t get cash transfer from the government, and second, the NHIF does not cater for child therapy. And then third, being in full-time employment since the child requires special attention,” Monica said.
The children who require special attention don’t learn self-sufficiency skills the way other children do. They also crave for attention, physical affection and visual mirroring that demands that the parents stay with them or assign someone who understands the children.
Kamau Mbugua, a blind teacher at Gitiba Primary School at the Karen End, told the Star it can be very taxing to deal with children with mental problems.
“The most affected are those who suffer from cerebral palsy, whose parents are required to be there for all the time, even when they go to school or are coming back home,” he said.
Kamau became blind in 2002 after undergoing four surgeries between 1996 and 2000.
"I was in class seven and it was on October 10, so the school had given us a holiday. I woke up a little late, at about 8am, and when I opened my eyes, everything was dark," he said.
“I had to start a new life in a society made in a way to discriminate against the disabled.”
Kamau said most parents suffer in silence or talk strictly to their close confidants because of the stereotypes in society.
“The things we use on a daily basis and also children use to learn or do other things, known as supportive devices, are super expensive. Many parents are drained and can’t afford them,” Kamau said.
"In fact, most parents are forced to leave their jobs so they can take care of their children due to the special attention they require."
STRUGGLE FOR ACCEPTANCE
Experts told the Star most parents struggle to understand their children and why they had them in the first place.
The change in their life circumstances leads to grief symptoms, with many feeling anger, denial, discontent and denial.
This calls for parents to have a positive attitude so they are not frustrated where they have to teach — and reteach and reteach — some of the same lessons until the children understand.
A number of parents who fail to cope with the situation remain frustrated. Some end up with low self-esteem. They become angry or unleash frustrations on people who don’t deserve it.
“It is a long journey, where parents invest hundreds of hours teaching their children everything, including simple things like holding a pencil and a handkerchief correctly to how to think about others' feelings,” Kamau said.
“It also takes time to make the children understand their situation.”
Some parents are frustrated because they are unable to handle their children’s behaviours or meet their needs on their own, which prompts some to hide them from the public. Others feel responsible for their children’s diagnosis and needs.
“These parents are taken in rounds or pulled in different directions when they are finding solutions for their children,” Kamau said.
A parent, whose name is withheld for legal reasons, told the Star some people take advantage of their disabled children.
“My deaf son was sodomised in a Machakos school. He is not alone. Some people go ahead to steal from him because of his status,” the mother of one said.
The parent added that the school administration took advantage of the situation to hide the atrocities committed to her son.
“They covered up the incident until the school closed and the son came home to tell me, when it was late. Any medical assistance we got, it was late, but I thank God the child is now okay,” she said.
Other challenges include a special focus on the children’s needs, which forces parents to lose touch with other people as well as themselves. Others suffer from poor or increased appetite (depending on how they fight the stress), insomnia or hypersomnia, or their sleep is frequently interrupted when their children are unable to sleep.
Parents also suffer from fatigue and low energy following day-to-day challenges, which wear them down emotionally and physically.
MEDICAL ATTENTION
Monica added that the immune system of a number of disabled children is weak, following the challenges they face growing up.
“This makes my daughter require an additional person because the teacher alone cannot handle her. It is the same with other parents,” she said.
“In the end, we are forced to pay more money for these people since the government does not.”
She said the medication has strong side-effects on the child’s organ development.
Kamau said the treatment is difficult to obtain. “A number of disabled children require special medical attention, which remains very expensive or not available in the country,” he said.
“Parents need to cater for psychotherapists, tutors, medical specialists, and the list goes on.”
The children in most cases also require special treatment and special supportive devices to go on with the daily duties.
“Paying for physiotherapy once or twice or three times a week drains these families. Remember some parents are poor and putting food on the table is also a challenge,” Kamau said.
Christine Kaweria, a small trader in Karen, said being a single mother has been a challenge to raising her disabled child. She believes everyone has been taking advantage of her situation.
“I am a poor woman struggling to pay fees for my son, my late sister's seven children and to take care of my grandmother,” Kaweria told the Star.
“No one cares how I struggle, and at times, mysterious people masquerading as businesspeople vandalise what I have. I appeal to Nairobi Governor Mike Sonko to help me just protect my business since I don't want to beg.”
