Selfless resolve to help autistic children

A decade ago, autistic children in Kenya were pronounced mentally sick; until FELICITY NYAMBURA, with a love for her grandson, came into the scene. Fondly referred to as cucu (grandmother), the Autism Society of Kenya founder talks to KIUNDU WAWERU.City Primary School in Ngara, Nairobi, boasts an autism unit. The unit is currently rehabilitating about 90 children with autism, a neurological developmental disorder characterised by impaired social interaction and restricted and repetitive behaviour. The unit’s journey of inception is rigged with the wonder of a mysterious condition and one family’s story of struggle and betrayal.Felicity Nyambura says autistic children have a bright future if interventions are carried out early. [PHOTO: MARTIN MUKANGU/STANDARD]It began in 1983. Felicity Nyambura, now 71, was ecstatic when her first-born daughter, Rosemary Muthoni, gave birth to her first child, a boy. When she visited them, Felicity, a nutritionist, noticed her grandson — Andrew Safari — was unusually quiet. He ate and slept little.At three months, Safari still resembled a toddler; his head was still wobbly. Worried, Felicity accompanied her daughter to the clinic and the health officers said they should not worry; every child was unique."I was sceptical," she recalls. "Having raised five children, I suspected something was wrong." Her worries were not unfounded. Safari bypassed other milestones like sitting and crawling. Felicity prevailed upon the young couple to seek specialised healthcare, creating a rift between her and her son-in-law, who said she was interfering. "Safari sat at age one and walked at two and half years, but couldn’t talk. Doctors were of no help and one paedtrician recommended he be taken to kindergarten — they said socialising would help him," Felicity recalls.At the kindergarten, Safari was a loner — he sat quietly lost in his own little world."At four years, Safari understood nothing in school, though by this time he was able to speak. At five, he was still in baby class and the teachers complained he was a slow learner," says Felicity.Then there followed a series of school transfers, some to special schools. At 12 years, Safari’s condition worsened. He lost his speech, became even more introverted and would scream at night saying there were snakes in his room."This took a toll on his parents, and they argued bitterly, each accusing the other for the mysterious condition. Eventually, the man left, never to be heard from again," Felicity reveals.Rose, Safari’s mother, worked at a bank. One day she received a call that her boy had disappeared. She hurriedly left her workplace, leaving behind the keys to her drawer. Felicity says: "Someone took advantage of this and stole Sh14million from the bank. Rose was the first suspect and she got arrested. Later, the real culprit was apprehended, but Rose had lost her job."Worsening conditionBy then, Rose had given birth to another son. The problems took a toll on her. To support her daughter, Felicity moved back to Nairobi from her rural home. "I had to protect my daughter’s sanity. I asked her to join her sister in the US and I was left to take care of her two sons," says Felicity.Meanwhile, Safari’s condition became worse. The best neuro-surgeons in the country’s top hospitals had examined him; he had undergone countless tests and scans, with no luck. Many people said he was mentally sick. The family’s coffers, too, were running dry. "One day, at Kenyatta National Hospital, a nurse asked me to seek an English Professor who was visiting Gertrude’s Children Hospital," says Felicity.She walked to Gertrude’s and found Professor Forbes in his office. Safari, meanwhile, went to the bookshelves and started flipping the covers. She says: "I tried to stop him but the professor asked me to let him be. Then out of nowhere, the professor said: ‘He has autism’."Felicity could not even pronounce the word. But the mystery condition now had a name. However, to her pain, she learnt that autism has no cure; it can only be managed. She started to research. "One of the remarkable discoveries is that autism can be managed with diet," says Felicity.Foods irritating to autistic patients include cow and goat milk, wheat, sugar, ripe bananas and red meat.Improvement"I started him on indigenous vegetables. In six weeks, I found Safari sleeping cosily on the couch, a great milestone," says Felicity.She then engaged an occupational therapist and Safari changed for the better. One day, Safari was with the therapist at a supermarket picking items and placing them in a basket. He attracted the attention of a hawk-eyed journalist who had earlier seen him at a special school. Amazed at the change, the journalist featured Felicity on television, highlighting on the magic of diet in managing autism."After the TV programme, my phone never stopped ringing. Soon, I had 58 parents with autistic children seeking knowledge," Felicity says.In 2002, President Kibaki announced Free Primary Education for all. One night after praying in frustration, Felicity had a revelation –– even autistic children belonged to the Government. They, too, deserved free primary education.City Primary had a disability unit and some unused classrooms. The then headmaster gave Felicity and her group two of these. The first days were full of struggle but with a lot of networking, companies came on board to sponsor the unit. The unit gets a paltry sum from the Government while parents meet the bulk of the budget. The Autism Society of Kenya, with Felicity as the CEO and Programmes Director, continues to lobby the Government and stakeholders, creates awareness of autism and trains parents and teachers. Safari, now 28, joined his mother in the US and continues to get specialised care."With early interventions, autistic children have hope and can enjoy a great future. However, in Kenya, it’s sadly not so. The Ministry of Education has not done much to create awareness on the condition nor put up enabling structures," Felicity concludes.

Selfless resolve to help autistic children

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