It was a moment of emotional outbursts when parents with physically challenged children relived their experiences at #Lets Talk Family Forum of the Children’s Developmental Centre, (CDC). ODIRI UCHENUNU-IBEH recounts the outpouring of emotions by dejected parents and writes.
It has become obvious that parents whose children suffer various degree of mental disorder go through a variety of experiences, especially when it is viewed from the economic perspective.
These disorders range from Autism, Cerebral Palsy (CP) and Down Syndrome which physically and mentally challenges the children.
According to experts, Autism, or autism spectrum disorder, refers to a range of conditions characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication, as well as by unique strengths and differences.
CP is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). The CP usually is caused by brain damage that happens before or during a baby’s birth, or during the first three to five years of a child’s life.
On the other hand, Down syndrome is a chromosomal condition that is associated with intellectual disability, a characteristic facial appearance, and weak muscle tone (hypotonia) in infancy. All affected individuals experience cognitive delays, but the intellectual disability is usually mild to moderate.
In Nigeria, investigation has shown that the majority of families who have children with intellectual and developmental disabilities do not have access to professional services. Acute shortage of special educators, coupled with social, economic and cultural problems, negatively impact the development of specialised services.
The Nigerian National Assembly in 2013 estimated that there are over 20 million people living with disabilities in the country while the Nigerian Institute of Legal Studies in 2010 noted that 9 out of 10 persons with disabilities in Nigeria live below the poverty line.
Overall, the citizens continue to experience great disparities in educational, economic, medical, and social opportunities, in spite of the country’s abundant natural resources. Against this background, it is obvious that living with a child who has a disability can have profound effects on the entire family structure.
The prevailing economic and social difficulties, and the absence of government supports as practiced in high-income countries, have resulted in the inability of most families to meet the daily needs of children with disabilities.
At the national level, there is a lack of political commitment commonly held by politicians and senior government officials to ascribe to disability issues a measure of importance required for practical progress in terms of disability rights.
The widespread under-estimation of the abilities of persons with disabilities has created a vicious cycle of under- expectation and low priority in terms of allocating resources to improve the status quo.
Consequently, many families are known to reject their children with disabilities, forcing some of these children to roam the streets begging for alms, or to die as they become exposed to the elements.
Notable caregivers in Nigeria say the reasons for the abandonment of the children are not implausible. Often, family members become fixated on the myths that only emphasise the embarrassment of giving birth to a child with a disability, and attributing such disability to the anger of the gods or their ancestral spirits.
Because of these erroneous ideas, children with disabilities may become ostracised and denied their fundamental human rights.
Some of these issues were reverberated on the occasion of #Lets Talk Family’ a forum organised by the Children’s Developmental Centre, CDC in Lagos which provided opportunities for parents of children with intellectual disabilities from different backgrounds to share their experiences.
Numbering over 300 from parts of the south west Nigeria, emotions rented the air as few parents and people living with disabilities who spoke talked about rejection by the society and in some cases husbands abandoning homes because their wives bore children with disabilities.
Sharing an emotional moment with our Correspondent at the occasion, Mrs Adna Okafor, who has a child with disability complained that their social outlook has been severely restricted because her neighbours avoid interacting with her.
She said, “When neighbors saw my baby who has Down syndrome, they did not feel comfortable talking to me. Also, the fact that little or no time is left for leisure or recreational pursuits was a concern to me.”
27 year old Anthony Kupe from Badagary area of Lagos said growing up was rough and challenging as well as exciting.
“I am an online event promoter and a graphic artist. I suffered CP but I was able to conquer my challenges because I attended a public school. I admired other people making progress so I was challenged to imitate them and in the process I took up the interest in graphics. Today I feel I am fulfilled and thinking of getting married very soon”, he said.
Meanwhile, President of the association of Intellectual and Developmental Disabilities of Nigeria, AIDDN, Segun Joseph said in Nigeria, parents with such children, mostly illiterates are majorly poor and lack information as to what is happening to their children.
Joseph said the problem is more compounded for the parents as government pay attention to People With Disabilities, PWDs, who are in the category of physically challenged like, visually impaired among others leaving out the intellectually challenged cluster.
Joseph in summation of his advice to the parents observed that though no matter how much a parent may love his child with special needs, the constant effort of caring for her can be mentally and physically exhausting, and financially draining, and therefore advised parents to always reach out to advocacy groups that may be able to help with the financial and emotional burdens of caring for their child.
Service Director of CDC, Dr. Yinka Akindayomi said that the Centre decided to organise the forum to give parents the opportunities to share their experiences having identified agonies they go through. The event she said allows experts to engage parents and offer them hope in their period of emotional stress and difficulties.
“The CDC is supporting these children in various ways and most importantly giving hope to parents as they are not the architect of such problems”, she noted.
She expressed disappointment that parent of a child with developmental disabilities may have to deal with complex issues related to education because either a private education must be sought, or an adequate public education must be available.
She said, “Parents often have to advocate for their child to receive a quality educational experience that will enrich them and this often requires close parental contact with the school system.
The parent must monitor the child’s interactions with others to ensure she or he is not being bullied, while transportation to and from school may require a specialised bus or van, and children with severe disabilities may need to be schooled at home.”
She advised that the care of the child may last a lifetime instead of 18 years and parents may have to set aside money in a trust fund for the child’s care when they pass away.
Mrs. Emmanuella Otiono, educational consultant with Center Escolar Educational, who moderated the event stated that parents of mentally challenged children commonly experience a gamut of emotions over the years as they often struggle with guilt.
Otiono advised that these parents must deal with the “death” of the perfect child who existed in their minds and learn to love and accept the child as he/she is.