Going by increased awareness and the advocacy on inclusiveness for persons living with disability, not many expect people in the 21st Century to throw a kid born with Down syndrome, DS away or abandon it altogether, though this was the norm in the dark ages.
Today, with education and social integration, the situation of children living with DS in Nigeria is being turned around while a few only are on the path of living an independent life. DS is a condition in which a person is born with an extra copy of chromosome 21. People with DS can have physical problems, as well as intellectual disabilities.
Every one in 865 live births is born with DS, according to the September 1982 ’Journal of Medical Genetics’. People with the syndrome may also have other health problems. They may be born with heart disease.
They may have dementia. They may have hearing problems and medical challenges with the intestines, eyes, thyroid, and skeleton. Although, DS cannot be cured, early treatment programmes can help improve skills.
They may include speech, physical, occupational, and/or educational therapy. With support and treatment, many people with DS live happy, productive lives.
While it is cheering that with education, skill building and other form of empowerment, some affected children could attain independent living. What then becomes of million others in this environment that may never be able to get to that level?
Is it the DS that limits them in an event of failure to live independently? Is it possible to still change their lives for the better? These are some of the questions raised recently at a forum that brought together children living with DS, their parents, caregivers and some agencies, under the auspices of the Down Syndrome Foundation of Nigeria, DSFN.
The Founder and National President, DSFN, Mrs. Rose Mordi said although, parents were responsible to care for their children, educate and train them, sadly, a lot of parents were not willing or ready to bring out their children that live with DS.
“More than 80 per cent of the people who come to us are from the middle to low income level; the “A” list is still not willing or ready to come out. That’s one of the challenges we are facing.” In her short address during the Down syndrome Awareness Week, which held in Lagos, Mordi highlighted the case of one of the children living with DS who offered prayers before the event kicked off formally.
Normally, without education and training, it would have been difficult for such a child to conduct the opening prayer. According to the President of DSFN, this prayer and other skills the children have been taught through the formal education offered by the DSFN “are some of the things we (the DSFN) are chanced to put in place.
The children living with DS have to pray for themselves, but they cannot unless they are trained. “A lot of parents don’t seem well for their image to be identified with a child who has any disability for that matter,” Mordi lamented.
She noted that despite the awareness being created by the DSFN and other non-governmental organisations, superstitious beliefs around DS still persist in the environment, hindering outcomes in the area of awareness to improve living standards for persons living with disability including DS.
“But we have come a long way; we have been able to actually help a lot of families out of the superstition and ignorance; we have been able to take care of children medically, educationally and socially but we still have a long way to go.”
While condemning the idea of parents not identifying with their children living with DS, Titilayo Tade, Assistant Director, Medical Social Services Department at the Lagos University Teaching Hospital, LUTH, Idi Araba, said in conducting a reality check with regards to where the country is on DS with a view to plan for the future, Nigeria must determine: “How many people in the country are living with DS; how many families are affected, know the number of schools available for children with DS; as well as get the data of children born with DS in Nigeria.”
If this data is necessary for better planning, how would getting the statistics be possible when majority of affected parents and care givers deny their kids live with DS? Based on this development, Mordi has called for a change of attitude not only from parents and relations whose children were directly affected.
She said the society must also be reorientated with a view to tackle stigma, ignorance and superstition around DS. Highlighting other challenges facing DS in the country, the president of DSFN said the three tiers of governments have not put structures on ground to address problems of DS as it has been done in advanced industri-alised countries of the world.
On her part Tade urged people with different forms of disability to form networks that would give them platforms to address their common problems. “All is geared to providing the best quality of life for children with special needs. Apart from DS, different groups of families/institutions of children with disabilities include persons living with Cerebral Palsy, CP, Hydrocephalous, Spina Bifida, Autism, among others.
These different groups must come together to form an umbrella group,” Tade suggested. Although, there is tendency to focus on the medical needs of people with DS while neglecting the social aspects, she reasoned that people with and families affected by DS do not live in a vacuum.
“Who we are, who we want to be and who we will be is shaped not only by genes but by our environment, social interactions as well as our society.”
The social worker listed benefits of a Special Needs Family Network to include the sharing of common goal, sharing experiences that lead to a common understanding, giving a new perspective to addressing common medical and social problems, giving unconditional acceptance of the condition, learning and reinforcing coping skills, sharing information, ideas, resources, among others. She urged the DSFN and other groups to unite with others and create a formidable advocacy group.
“Nobody understands your situation more than you. So, speak with a united voice to be heard above all the contesting voices and create the way forward for yourselves and our children.
By: APPOLONIA ADEYEMI
The Newtelegraph News
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