Compassion for children with autism
Source: Daily Monitor
When I walk into The Dorna Centre for Autism, Leon is the first person I come across. He is everything an eight-year-old boy should be; hyperactive, curious, and cheerful. Even if his speech is incoherent, he is saying something.
He continuously moves around the house, talking to himself. When he gets tired, he sits on the sofa for a few minutes, singing a tuneless song while clapping. Before long, he is up again, climbing chairs to touch the photos on the wall.
Leon has autism. And he is not alone. Currently, there are four other children at the centre run by Dorothy Nambi. Calm and exceedingly humble, Nambi is a determined woman. Even as we talk, I can sense the silent strength running through her words. Dealing with autism is not for the weak-hearted.
“I’m attached to my children,” she says. “People normally have stereotypes about conditions they do not understand, and this affects me emotionally. The child may not feel the pain of the unkind words, but I do,” she says.
Brought up in a family of five, Nambi’s mother always maintained that she would become a teacher. “I taught Sunday school at St Yusuf Lugalama Church in Ntinda and you can imagine my joy when our teacher, Aunt Christine, also encouraged me to pursue teaching,” recounts Nambi.
A single mother, Nambi had her son when she was in Senior Four vacation in 1994. She narrates; “There were pressures for girls to get married after they got pregnant but my parents treated me well. After I gave birth, mother encouraged me to continue with my education. She shouldered the responsibility of raising my son.”
Her son, a naturally slow learner, gradually gave her the patience needed to deal with children with special needs. While she motivated him to excel by promising rewards, his father was impatient with the child. Even now, as he studies his medical course at St Francis School of Medicine in Namataba Mukono, Nambi’s son still has to be motivated with promises of rewards so as to work hard.
“After studying teaching at YMCA, I taught nursery school for 10 years. I had heard about and even seen children with special needs, but they were out of my immediate circle,” says Nambi.
It was at Mother Goose Nursery and Daycare in Ntinda that she came face-to-face with autism; “One of the boys, Kevin, did not want to play with the other children. At break time, he sat alone in a corner, locked away in his own world. When I talked to his parents, they told me they did not understand his problem.” The more attention she gave Kevin, the more he opened up. They became friends, and by the time she left the school, he had made tremendous improvement in his social skills.
He also tagged at the strings of her heart and she made a commitment to help others like him, enrolling at Kyambogo University to study special needs therapy.
A slow smile lights up her face as she beckons Leon and hands him a violin to play. He mimes Twinkle Twinkle Little Star as he saws at the strings. With her own son grown, at 21 years, and living on his own, it is clear that for Nambi, taking care of these children is her life. Nambi says; “I worked with Komo Center for Understanding Autism in Entebbe for five years, and I learnt a lot about caring for autistic children. I also read extensively about the disorder now that I was surrounded by these children. I learnt speech therapy from watching the professionals.”
Nambi says most centres do not cater for children beyond 12 years. The bleak future of these children bothered her, so she set up her own centre, intended to offer care beyond childhood.
Opened in January 2012, the centre is housed in a bungalow in Ntinda, next to The Ministry of Gender, Labour and Social Development, behind Capital Shoppers with a small compound in which is a wing for physical exercises for the younger children. Inside the play room, there are two exercise bicycles.
“It is important for the children to exercise because they spend the day sitting or lying down. Obesity is something we are very sensitive about as we manage autism,” explains Nambi. Twice a week, the children are taken for long walks in Kiwatule Recreational Center as well.
Although it is true that autistic people do not excel in formal education, this is not a hindrance to their learning of other skills as Nambi explains; “They can bath themselves, brush their teeth and wash their own clothes. They can hear and understand instructions so we give them speech therapy to learn a few words to communicate with.”
Art and music lessons are also held by professional therapists at the school to keep the children busy making beads, and paper flowers and gourds. At the back of the house, other children are crushing charcoal to dust with wooden blocks to make briquettes – blocks of flammable matter substituting, and longer lasting than charcoal.
The children’s diet excludes meat, milk, and wheat flour, “because these are not easy to burn off,” says Nambi. “We also try to reduce their sugar intake to keep the children healthy and calm. Sugar makes them energetic and restless, making it difficult for the caretakers to look after them.”
Medical therapy deals with secondary issues such as depression in children, although Nambi says she has not encountered such cases, some of the children are over active and do not sleep easily; “We mix herbal medicine, such as therapy water, from consulting doctors in their food to calm them down. There is also a type of brown sugar we use that acts as a sedative.”
Running a school has its challenges and Dorna Center is no exception. There are few special needs therapists and the cost of employing them is high. Nambi has had to do speech therapy with the children yet she is not qualified in it. The rent for the premises is also quite high and yet there is a need to invest money in buying more equipment to help rehabilitate the children.
“Parents sometimes live in denial and yet their children find it hard to interact with other children. This is a burden that the entire community should bear with us,” says Nambi, adding, “I’m appealing to well-wishers and donors to join us in rehabilitating these children.”
Autistic disorder or autism comprises a range of complex neurodevelopmental disorders characterised by communicative difficulties and repetitive patterns of behaviour. Symptoms begin in babyhood and become established by the time the child is three years.
Dr Vincent Karuhanga, a medical physician, says children with autism have difficulty interpreting what others are thinking or feeling because they often lack the intuition.
“They do not want to play with their peers and have difficulty communicating both verbally and non-verbally. They love doing things on their own and may be forced to be rude.”
A baby with autism may be unresponsive or focus intently on one thing to the exclusion of others. They smile less often, do not look at people often and do not respond much to their own name.
Children also display many forms of repetitive behaviour.
Both genetic and environmental factors during pregnancy play a role. Autism could result from abnormal brain development caused by defective genes.
Brain development can also be impaired by infectious diseases, alcohol, smoking, vaccines and prenatal stress.
“There is no cure for autism and yet incidences of the disease are increasing every day,” says Karuhanga. “Early intensive education should be carried out by caregivers to manage the disease.”
Highly structured training sessions, by specialised schools, can help children develop social and language skills. In some children, the disorder may be mild causing speech impairment only, while in others severe autism can cause mental retardation and epilepsy.
Sometimes, doctors may prescribe medication to treat such manifestations like depression or obsessive compulsive disorder.
Who is Dorothy Nambi?
Born 35 years ago to Mr and Mrs Lwanga of Ntinda, Dorothy Nambi holds a degree in counselling and guidance from Makerere University.
She attended Kalinabiri Primary School, Uganda Martyrs Namugongo and YMCA. Her son, who inspired her journey to help austic children, is now studying to become a laboratory assistant.
Dorothy Nambi encounters parents who would rather take their children to shrines than autism centres because they believe they are possessed;
“They tell me to bring pastors to chase demons out of these children. I try to explain to them that this is a medical condition that can happen to anyone.”
To strike a balance, she now runs the home based on a Christian theme, complete with prayer hour and hymns on radio; “I believe this has helped us a lot because during the term when the children are at the centre they do not fall sick.”