By Chioma Obinna
When on January 15, 2011, Evelyn and Jonathan Agbo gave birth to their baby two years after they tied the nuptial knot, their joy knew no bounds. They were full of expectations.
But their world came- crashing when all of a sudden, their new baby, Daniel began to behave strangely.
The birth of the baby which should have brought joy brought sadness. At age one, it was discovered that Daniel’s growth was retarded and unable to explain the boy’s condition; the situation became disturbing to the couple.
Surprisingly, the situation pitched the couple against other members of the family. Daniel’s grandfather threatened to strangle him, claiming that his spiritual consultations revealed that Daniel is a curse to the family.
The behaviour of Jonathan’s father is not unconnected with the fact that many people in Nigeria depend on spiritualists to find answers for many mysteries of life. Consequently, many children with disability are taken as witches and evil. Such is the story of Evelyn and Jonathan.
Narrating his ordeal, Jonathan said Daniel was initially taken to a speech and language centre where he was diagnosed of autism when he could not walk at age two.
“The disposition of my father prompted us to visit many healing homes but all to no avail.” Jonathan told Good Health Weekly.
“We discovered that he (Daniel) as a baby does not always understand how he was feeling or how others were feeling about him. He never, ever felt at ease wherever we were.
“When we could not understand him anymore, we took him to a private hospital in Lagos. They assured us that the problem was a mild situation of delayed growth.”
There is no gainsaying that bringing up a child with special needs and not sure of his/her future can be overwhelming.
The license to a child’s happiness is embedded in his or her rights to life, education and basic living standards. These no doubt prompted the couple’s continued search for better care for their son.
But a year after, there was no change, this continued until a friend of mine directed us to the Lagos University Teaching Hospital, LUTH, where it was confirmed that he has autism.“
At LUTH, we were introduced to autism support group established by the Guaranty Trust Bank, GTB, under its Orange Ribbon Initiative. Since then, we have continued to enjoy support. With the support group, we have learnt more about the disorder and how to take care of the child,” Jonathan added.
Daniel is just one out of the estimated one million Nigerians living with autism. Autism Spectrum Disorders, ASD is a lifelong developmental disability that affects the way a person communicates, relate with people around them but have difficulties with everyday social interaction and other disabled children are denied these rights.
Today, little or no attention is paid to various disabilities in Nigeria. Many of these children are erroneously believed to be possess witchcraft.
They are locked up and left to die. Findings have shown that most children living with ASD are denied basic human rights, resulting in poor quality of life and trauma for their parents, relations and care givers.
According to a Consultant Psychiatrist & Psychotherapist, Dr. Maymunah Kadiri, autism, is said to be the fastest growing developmental disability and has become the most urgent international health and educational issue. For her, evidence has shown that behavioural and educational intervention can significantly remediate the deficits in language play and communication skills.
However, early intervention remains key for better prognosis. Concerned about this problem, some organisations like the Guaranty Trust Bank, GTB, is raising awareness on the disease, providing medical training opportunities and support for families as well as scholarships to these children. For the Bank, adequate awareness will demystify cultural and spiritual beliefs associated with the disorder.
, GTBank birthed its Orange Ribbon Initiative to raise awareness about developmental disabilities in Nigeria children.
Speaking on its intervention So far, Assistant General Manager & Group Head, Corporate Communications & External Affairs, GTBank, Mrs. Oyinade Adegite said the initiative which began in 2009, has raised awareness among parents and medical practitioners who did not have knowledge of the situation and could only devise coping methods before now.
“The objectives of the Orange Ribbon Initiative were to ensure societal awareness about ASD, reawaken people’s social consciousness about the plight and requirements of children living with ASD.
She said the initiative was also to stimulate advocacy for the establishment of comprehensive and inclusive schools for affected children as well as integrated centres for adults, sponsor, support and lobby for legislation that protects the rights of people living with developmental disabilities.
The initiative, she said also encourages government and private organisations to fund research in autism and re-orientate societal thinking regarding the fallacies concerning ASD.
She said currently, the initiative have been able to provide One-on-One Autism assessment sessions with ASD professionals from the United States of America in partnership with the College of Medicine, University of Lagos and Neuropsychiatric Hospital Aro, Abeokuta.
“We have been able to train teachers of children with special needs. Also we set up an Autism radio show “Let’s Talk Autism” which was aired on several radio stations. We have held the annual conference for six years and within this period, the participation of the Nigerian community has significantly increased.”
On the impact of the programme, she explained that the community is more aware of the condition which has in turn reduced stigma and increased the need for early diagnosis and intervention.
“Within this period also, the Bank has been able to build a community of medical practitioners and caregivers who are willing to learn and teach others about autism and its management and has also encouraged parents to seek the necessary medical and educational help that will help their children.”
Throwing light into its achievement in the last six years of GTBank Orange Ribbon Initiative, Adegite said a number of attendees of its annual conference who own schools have set up special classes in the schools, to cater for the special teaching needs of children with ASD. “This is as a result of the teachings they have received on how to care and manage a child with special needs.
“Parent’s forum has been set up, starting with about 100 parents, who regularly meet to discuss their challenges, release the tension of having to care for a child with special needs and learn from each other’s successes. Parents who used to keep their children at home due to non-availability of funds to enroll them in a special school, which is quite expensive, have taken the courage to ask for scholarship for their children’s enrolment in school.”
“Caregivers are now motivated to do their job of caring for the special children, having understood their behaviour and learnt how to care for them.
She added that the intervention has attracted the attention of the government. “State Ministries of Health, Education and Women affairs in Lagos and Ogun are now paying attention to the care of children living with ASD as well as introducing a number of projects in their calendar and curriculum.” She affirmed that the 2016 programme themed “Managing Autism, the Next Generation, Consideration and resources” assumed a broader spectrum in expanding research and partnerships.
The event which previously held only Lagos State was extended to Ogun State this year. Some of the highlights of the 2016 programme includes; a two-day conference attended by over 1,500 participants; free consultation/assessment service was provided for 375 children in Ogun State and 276 children in Lagos State and free training for over 150 teachers in special schools.
Enlightenment talks on management and care for children living with autism was provided to the general public through various radio and TV stations to further enlighten the general public and awareness walk and cycling around Lagos on World Autism Day.