#Lets Talk Family’ Forum of Organised by the Children’s Developmental Center, CDC has brought to the fore agony of parents raising children with intellectual disabilities. Yemisi Izuora was at the forum and captures emotions displayed by participating parents
The #Lets Talk Family forum of the Children’s Developmental Center was an experience sharing event during which emotions poured out actually revealed that parents whose children suffer various degree of mental disorder go through a variety of experiences but Nigerian parents from the perspective of economic environment are more severely depressed as they faced more demeaning experience.
These disorders range from Autism, Down Syndrome and Cerebral Palsy which physically and mentally challenges the children.
Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.
According experts, Cerebral palsy (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 3 to 5 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, 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 specialized 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, according to some studies.
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 says the reasons for the abandonment of the children are not implausible. Often, family members become fixated on the myths that only emphasize 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 ostracized and denied their fundamental human rights.
Some of these issues were reverberated at the occasion 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 who spoke talked about rejection by the society and in some cases husbands abandoning homes because their wives bore children with disabilities.
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 lacks 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 advise 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.
He also said most parents in Nigeria, especially the majority who reside in rural communities, lack knowledge of the true causes of disabilities and this is exacerbated by the fact that there are few resources to aid them.
He said the lack of knowledge and the absence of resources can generate feelings, which freeze parents into guilt, and could well prevent them from dealing adequately and productively with the child’s disability. The critical challenge here is to increase the number of trained medical and counseling specialists, and to enrich their curricula and field experiences so they are better trained to respond to the needs of families in terms of understanding the true causes of disabilities.
Service Director of CDC, Dr. Yinka Akindayomi said that the Center decided to organize 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.
“I am so sad that these parents are tax payers whose money should have been used to provide facilities to cater for such children. They suffer stigma and confusion and I expect that government pay special attention to executing projects that would help these children develop their abilities and contribute to development of the society.
The CDC is supporting these children in various ways and most importantly giving hope to parents as they are no the architect of such problems”, she noted.
According to Akindayomi, raising a child who is mentally challenged requires emotional strength and flexibility.
She said that the child has special needs in addition to the regular needs of all children, and parents can find themselves overwhelmed by various medical, caregiving and educational responsibilities, adding that whether the special needs of the child are minimal or complex, the parents are inevitably affected. Support from family, friends, the community or paid caregivers is critical to maintaining balance in the home.
Akindayomi said that apart from other domestic work, physical exhaustion can take a toll on the parents of a mentally challenged child as additional responsibilities can take a physical toll on a parent, leading to exhaustion.
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. 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 specialized bus or van, and children with severe disabilities may need to be schooled at home.
Sadly she observed that raising a child with a mental challenge may be more expensive than raising a typical child and these expenses can arise from medical equipment and supplies, medical care, caregiving expenses, private education, tutoring, adaptive learning equipment or specialized transportation. 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.
The father or the mother of the child in some cases may feel as though they somehow caused the child to be disabled, whether from genetics, alcohol use, stress, or other logical or illogical reasons and if this sort of engagement is not there such guilt can harm the parent’s emotional health if it is not dealt with.
Some parents struggle with “why” and experience a spiritual crisis or blame the other parent even as parents have aspirations for their child from the time of birth and can experience severe disappointment that the child will not attain the height they had in mind.
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 they have just as occasionally parents feel embarrassed or ashamed that their child is mentally disabled.
More embarrassing is that the most health-conscious and diligent parents of special-needs children find ways to blame themselves for the child’s challenges and this feelings of guilt can impair a parent’s ability to care for their special-needs child, or for other children in the household.
Guilt can significantly lower a parent’s ability to enjoy life, and it can negatively affect relationships with friends and family and parents who are battling these negative feelings can gain relief through counseling or by seeking help and companionship from a support system of friends, family and fellow parents of special-needs children.
Sharing an emotional moment with our Correspondent at the occasion, 27 year old Anthony Kupe from Badagary area of Lagos said growing up was rough, challenging as well as exciting.
“I am an Online event promoter and a graphic artist. I suffered Cerebral Palsy 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.
Some other parents who spoke at the forum complained that their social outlook has been severely restricted because the neighbors avoid interacting with them.
Some said when neighbors saw their baby who has Down syndrome, they did not feel comfortable talking to them.
The fact that little or no time is left for leisure or recreational pursuits was a concern to some families. There was unanimous agreement by the parents that to give quality care to their child with a disability would leave no time for recreation.