Support is vital for Down syndrome patients
Grace Wachira and Ann Nyathira
Ann Wanjehia’s first two children were fine during their infancy. At six months old, they could sit on their own.
However, her third child, Edward Njuguna (Eddie, as he is fondly known), at nine months could hardly support himself.
“It was difficult for him to support his head and his muscles were flabby. We did not have even the slightest idea why, so we went to the doctor,” she says.
Luckily, the doctor, who diagnosed Eddie in 2000, was sensitive. “He talked and walked us through what Down syndrome was since it was a new experience for my husband and I.
He explained that it was mild and Eddie would have delays in achieving certain developmental milestones. I, however, went the extra mile to learn more about it,” she explains.
That Eddie had the condition did not stop them from ensuring he had a normal life.
“We put him through school, an academy that spectacularly let us down. After four years of Eddie going through kindergarten, they sent us packing, saying no teacher would want their class mean score pulled down because of Eddie.
It was very painful, especially seeing the fee was not pocket change,” Ann sighs.
The journey to find a different school was quite difficult for the family. “We were still in denial because Eddie could pass for a normal child, but it was becoming difficult to find a school he could fit in since he was seven years and could not talk,” the mother of four says.
Constant repetition
As they searched, one of their friends, Pastor Mwalili, told them about a school he had opened for children with special needs. 
His institution, Emerald International School became Eddie’s new home. “He fit right in, his teacher, Jessie, nurtured him, and he took up the phases of learning.
One of our greatest joys was when he began to speak,” she laughs heartily.
Eddie enrolled for the Accelerated Christian Education learning programme. The staunch Christian family has played a huge role in ensuring Eddie turns out alright.
“He is now 19 years old, and has not been without his fair share of hurdles. At some point, he knew he was maturing and it was tough for him, but his elder brothers have been there to help him,” she says.
They have taught him how to raise alarm when people assault him. “We are confident he knows where he lives, has crammed our phone numbers, at least mine, and now, we are learning how to cross the road,” she adds.
The Wanjehias keep affirming their support towards Eddie and never stop repeating instructions.
“Persons with Down syndrome learn by constant repetition and reminders. We have to keep reminding him not everyone around him is as good as he is, that not all strangers are to be trusted and he gets it with time,” she says.
Ann recalls one time when Eddie was in an integrated school and had a crush on a certain girl.
“He could not contain it and would keep telling her that he loved her. The girl was so embarrassed.
I remember going to pick him up from school only to find her waiting to tell me to ask Eddie to stop professing his love for her,” she laughs.
Eddie would later move on and soon find another girl who understood him and helped him with his school work.
“My, have I bought that girl presents! She really understood Eddie and helped him cope,” she adds.
Down syndrome has not deterred Eddie from living his life to the fullest. “His father and I sometimes wonder where and how he learnt to swim so well and hold his breath.
We marvel at how great he is with his hands. He is very crafty: he makes jewellery and sells them.
We have helped him set up an account and trained him how to handle money since he is now a big boy,” Ann beams.
Eddie is currently studying Information Technology and Social Skills at Strathmore University.
“The institution has a tailor-made course for persons with special needs. Together with other parents with whom we share a support group, we show up to support Eddie whenever he has competitions,” she adds.
Over time, Eddie has learnt how to identify with others just like him. “He can spot a person with Down syndrome and does not hesitate to show them love.
He is the warmest person I know; he rarely gets angry and is now an extension of how we are as individuals at home.
The lessons he has taught us are invaluable. We know what it means to be patient, to fail and try again, what it means to try until we get it right,” she quips.
His love for music speaks volumes to how he sees life. “He enjoys secular music; something that is not my cup of tea, but even then, he busts moves whenever the music gets to him.
Once in a while, he presents speeches to us and we all hope that he will one day be completely independent and take care of himself,” she adds.
Eddie is among the many people living with the condition who have enjoyed support from family and friends.
However, this is not always the case. The Down Syndrome Society of Kenya (DSSK) says children with different special needs like Down syndrome are at a greater risk to get lost or go missing or even die due to their limited capacity in giving helpful information about themselves and their limited ability to navigate out of challenging situations.
Erick Madete, chairman of the society and a father of a 19-year-old son with the condition, says this should not always be the case.
“The problem is that most parents do not want to accept their children’s condition.
Out of frustrations and poverty in some cases, schoolgoing children with the condition are left at home.
If taken to school, a child would be able to communicate coherently, so they can easily share more information that can help in tracing the family and home,” he explains.
It is not rare to find such children missing. According to Madete, most of them do not go missing deliberately; they only wander off in search for adventure or out of curiosity.
Others run from harsh environment. Such decisions, he says, can sometimes lead to injuries and in worst case, fatality.
Lack of data
“Once such a child goes missing, they are exposed to all kinds of dangers, since most adult Kenyans do not know how to handle a child with Down syndrome.
They do not understand why a seemingly big child cannot express him or herself. In such a scenario, one should take the child to the police station,” he explains.
He notes that ensuring a child had a people with disability tag can really help in tracing the child’s origin faster.
Madete says one challenge they face is lack of right data on people living with Down syndrome, making it difficult for the society to adequately represent them.
This is made worse by parents hiding their children with the condition at home.
“As a society, we do not have the capacity to gather data. In last year’s census, we had made an official request to the government to count people with Down syndrome, but it did not happen.
A lot of government documents do not recognise this condition as a disability; you will find they only go with disabilities such as deaf and dumb.
However, developmental disabilities such as autism, dyslexia and Down syndrome are usually ignored, making it difficult to have the data,” he explains.
While one can register through the government, there are a number of challenges.
“They will asses you at a cost of Sh1,000. However, those who cannot afford opt out of registering,” he says.
The cost caters for access to government services and National Hospital Insurance Fund (NHIF) benefits.
“In case of any consultation, it sure comes in handy if you are registered,” he adds. The registration can be done at a hospital or through the DSSK.
Unfortunately, some parents shy away from registration because of stigma and denial of their children’s condition.
“You will find that a parent will either ignore that their child needs to be registered or maybe they just wouldn’t want to be labelled, and this affects the number of cases we have to deal with as an organisation,” he says.
The organisation has also presented memorandums to legal parties to ensure that persons with Down syndrome are absorbed into various systems such as health care and employment.
They are also working with the justice system in educating court users on intellectual disabilities, especially in matters inheritance.
They want to dismiss the notion that such people cannot handle property based on the perception they cannot express themselves fully.
