Meet Lilian Seenoi, a Maasai warrior who has taken her own personal battle from the streets of Narok, Kenya to Italy, India and now to Derry’s Racecourse Road.
Lilian’s nine year old son, Brian is autistic. In Derry this would have little bearing on the fulfilment of a complete life. In Kenya, and in particular among the Maasai tribe, it is viewed as a curse and a burden, not only on the family but the entire tribe.
“It is normal and acceptable for a husband to leave his wife if she delivers a child with learning difficulties,” explains Lilian. Such is the stigma attached to autism or any mental illness in Kenya, many mothers hide their children away.
“The reluctance to address the issue openly is common.
“Mothers of children with learning difficulties refused to talk to me about their child,” said Lilian, a social worker in Kenya.
She often met children with learning difficulties as she tackled the issue of female circumcision in Kenya.
“I spoke to one teacher who said she knew of ten children who never see sunlight. Mothers hide them from the village and even from friends and family.
“The fear that they are going to be abused, sexually, physically and mentally is such that they never get out. They are locked in the house as mothers go off to find food and water. Children are chained up; Many mothers believe it is the one way to ensure their safety. They fear for their child’s life.
“I knew my son had problems when he was nine months old but despite consultations with peadiatricians and neurologists a diagnosis never came.”
Brian was 19 months before he walked for the first time, he still does not speak.
“Getting my son diagnosed was difficult, I had to go to India just to get the diagnosis.”
Brian’s mother brought him to Derry in December and he has since been enrolled in Class 7, Foyleview School where the support systems have improved his quality of life.
This step was taken only after Ms. Seenoi began challenging perceptions in her home country.
“I wanted to find out where the myth that autism and mental illness are a curse began.
“I knew that the best way to break down barriers was to bring my own son’s illness out into the open. To talk about him openly and show that he is a blessing not a curse.”
This was far from easy as other mothers shunned Lilian: “I was using my own child to show them that there was nothing wrong. To show them that it isn’t a bad omen.”
It was however the reaction from within her own family that shows just how ingrained the belief is.
“My own mother and father find it hard to talk about Brian’s condition. Every day mother will ask, ‘Has Brian spoken yet?’ It is what she lives for, that would make her really happy. When I ask, do they believe Brian’s condition is a bad omen,
they refuse to talk about it. Mum only cries, dad has no answers for me.”
Indeed, such are her concerns for her son, Lilian feels her younger brother is the only person she can trust to look after Brian.
Taking Brian into the open was difficult for Lilian: “People knew there was something wrong with him.
They saw it in his behaviour, he was always biting himself. It was especially tough in my home of Narok but easier in the city.
“I put Brian in public view as I knew, after lots of research that he could improve and live a normal life.”
The catalyst for Brian receiving the help he required was when Derry man Paul Barr travelled to Kenya with the Changaro Trust.
Lilian recalls him asking: “Why don’t we get him help?”
Arrangements were then made for Lilian and Brian to travel to Derry where he is now being given specialist help.
He is currently on a sensory diet, tailored to his specific needs.
Lilian said: “At first I didn’t accept there was anything wrong with Brian but when I did, I knew I had to get him help, all the help I could. I have to try and improve his life.”
To that end Ms Seenoi has travelled to Italy to learn about the condition, India for the diagnosis and as no medical help was available in Kenya, finally to Derry.
“There simply is no health care provision in Kenya, unless you are rich. Even after Brian was diagnosed
“I went to an occupational therapist in Kenya and they asked me for the medical literature. Now that I know the lives of these children can be improved I want to go back and let some of the children in the villages out into the light.”
Despite his circumstances, Brian has adapted remarkably well to his new home.
“We arrived in Belfast on December 23rd it was -15 degrees and he stood in the doorway shaking. But he loves the cold, he loves the school and he has been constantly improving since we arrived.”
Driven by her belief to improve her own community, Lilian bought six acres of land in Narok. She is to donate the land on which she hopes to build a school for autistic children. “I go back in May and those mothers I have already spoken to will see the difference in Brian.
“They will want their own children to have the same improvement. People now know I have a child with special needs and hopefully they will soon see that this is not a bad omen and the situation can be improved.
“I dream of opening a facility where parents can have their child diagnosed and then schooled.
“I have already started fundraising for the school and we estimate it will cost more than £200,000. But it lets some children out of the darkness then it will be worth it.”