Nigerian Orphanages Spill On The Ups And Downs Caring For Abandoned Autistic, Cerebral Palsy Kids

Nigerian orphanges have shared what it is like caring for kids with disabilities.

Caring for a child with autism or cerebral palsy can be challenging. Children with autism often find it hard to understand simple instructions and social behaviour.

One could hardly make out any message from Mary’s shrill as she crawled towards a dimly lit apartment where Mrs Ifeoma Amamchukwu was seated that morning.

The frequent moves of her right fingers and wrinkles on her forehead didn’t send any discerning message either. But to Amamchukwu, the gestures were enough cues for her to know Mary (not real name) was hungry. Those worried expressions dissolved into wry smiles moments the caregiver started spoon-feeding her.

Making out hunger from the body language is an art that took Amamchukwu pretty much time to study after Mary was brought to her home located in the Iba area of Lagos about four months ago by the state Ministry of Youth and Social Development.

Guessed to be six-year-old, Mary, who is suffering from cerebral palsy, was abandoned on a pedestrian bridge around Isheri in March. She was rescued and taken to the Isolo General Hospital for test from where she was placed in the home.

“She was dirty when she was brought here. I bathed her and gave her food,” Amamchukwu said, caressing Mary’s back. “She nearly died shortly after the officials left,” she stated.

One of her workers had raised the alarm that Mary had passed out. She quickly invited a doctor working with the home and the girl’s blood sample was taken. It turned out that she needed blood transfusion as her blood was dark.

Amid anxieties, the caregiver footed bills for a series of tests carried out on Mary to save her from an imminent death.

“The doctor together with our in-house nurse started treating her and she was getting better. We spent a lot of money but we thank God she is now playing with other children,” Amamchukwu said.

With most of the 11 children with special needs in her care neglected by their parents, the middle-aged caregiver’s everyday life is completely tied to the routine of catering to the vulnerable kids. She stated,

“I have been operating the home for four years now. Some of the children are autistic, while others have cerebral palsy. One of them was abandoned inside a church at Lekki. He was six months old. The mother left him in the care of a teenager and lied that she wanted to get some snacks.

“The case was reported to the police who involved the state government and he was brought to the home sometime in March.  The majority of the children in my care have been abandoned and since I started the home, there is no stable source of funding. One person can just walk in and donate a carton of noodles.

“I have a school where I get some money to take care of the children but for some months now, the school has not been functioning due to the COVID-19 pandemic. We don’t get financial support from government but recently the Lagos State Government brought some food palliatives for us.

“The Ministry of Youth and Social Development places children in the home and assesses it frequently. That is the kind of support we get from them. We also submit a report to the government every month. We depend mostly on individuals and companies that come around.”

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A social worker at the home, Tessy Ozobialu, noted that the impact of coronavirus had heightened spending for the healthcare of the children.

She explained that they were supposed to be using government hospitals to cut costs but because of COVID-19 and the fear of exposing them to the virus in public health centres, they were being taken to private hospitals. Ozobialu said,

“The children have low immune system and we don’t want to take the risk of exposing them. We use private hospitals. A test may cost N6,000 or N7,000. They also undergo brain scan which costs about N30,000 to N40,000.

“It is when we know their brain condition that we know the kind of therapy to administer. There are some medications and particular diets they take every day. For a special child, you spend double or three times of the amount you spend on a normal child. They are always on drugs and we have to be on top of our game to keep them healthy.”

Incurring debts for special children’s welfare

The United States Department of Agriculture in 2014 estimated the cost of raising a child from birth to 18 years at about $13,333 (about N5.06m at N380 to $1) per year. However, the Centers for Disease Control and Prevention said it costs $17,000 (about N6.1m) more per year to raise a child with autism. That ramps up the cost at about $30,000 – N11.4m. The humungous cost may account for one of the reasons many poor Nigerian parents abandoned their children with special needs.

But for the fulfillment she derives bringing happiness to abandoned special children, Pastor Ololade Adamolekun, the founder of an orphanage on Iwo Road, Ibadan, Oyo State, has contemplated shutting down the facility on many occasions.

For the past 10 years that the home kicked off, she has no worries dedicating her time to the wellbeing of such kids but for the sapping financial commitment associated with it.

Like Amamchukwu’s, her home depended on gifts donated by cheerful givers and organisations at irregular intervals and amounts insufficient to take care of her 27 ‘adopted’ children living with disabilities.

Their conditions vary from cerebral palsy, autism to Down’s syndrome – all of which require substantial sums in medical care and feeding.

“Almost all of them are now abandoned. We cannot locate their parents again. Most parents will just bring them and run away because of their (the children’s) special needs,” Adamolekun explained to Saturday PUNCH, citing different cases of abandonment.

She told of a child, Sade, whose father abandoned her and her mother in Ibadan to remarry in another state. The mother brought her to the home through a church and the girl was taken to the state Ministry of Women Affairs for documentation.

After three months, the mother also absconded and relocated from Ibadan. That was about seven years ago and Sade is now 16-year-old, the caregiver said.

“She could not talk or walk then but now she could describe and express herself through gestures,” the pastor said with an air of fulfillment. She continued,

“It has not been easy taking care of them. Most of them are on drugs and their drugs are expensive. We have to do physiotherapy, speech therapy for most of them and they have to be fed. We have to pay staff, rent and electricity bills.

“There are 17 workers here. We depend on friends and churches to survive. It was about two weeks ago that the state governor gave us some food items but our needs are much more than that. Many times I felt like quitting but I don’t have a choice because it is my call.

“I tried to run a school for children with special needs but it shut down after four years due to financial challenges. I had to pay for physiotherapy, speech therapy and special education teachers. If the parents paid for a term and they did not see any improvement, they would not pay again.

“It is a mental issue and it takes some time before you start to see changes in the children but the parents are too eager to see changes. And because it was a boarding school, it made it easy for the parents to just abandon them. When I incurred huge debts, I had to close the school.”

SEE ALSO: 2017 World Autism Day: Temi Otedola Shares Experience Living with her Autistic Brother

Stigma from neighbours amid high costs

Worthy as the cause is, the experience is a mixed bag of fulfillment and exertion for Pastor Samson Okoliko, who runs a home in the Idimu area of Lagos.

In its 20 years of existence, the home had brought succour to many children neglected by their families on health grounds.

Recently, a girl of about five-year-old with cerebral palsy abandoned at Giwa-Oke Aro in Ogun State was accommodated in the home after she was rejected in three different orphanages – apparently because of the high cost and dedicated attention such a child requires to survive. “The challenges are enormous,” Okoliko admitted.

“There are some of them who cannot communicate. The girl is one of them. You won’t know what is wrong with them so they need constant check. You need to find out if they are hungry or have any issues by all means.

“Many times when I was asleep at night, I would suddenly hear their cries and I have to attend to them instantly. There is also health challenge because their immune system is weak.”

Apart from sacrificing time and expenses, stigmatisation by neighbours is a major issue Okoliko has to deal with. Over the years, he has adjusted to the reality of resentment his operation attracts from neighbours. Okoliko said,

“People have moved out of our area to avoid those children. Initially, I was begging to take care of the children but I stopped along the line when people realised that I was committed to the cause. They started giving us donations which we manage to run the home. We don’t have any special or stable source of income from anywhere.

“My wife shared in the dream and our children have also been fantastic. They don’t see them as different children. They see them as part of us. We eat the same food and live together like a family. We have 33 children now and 11 of them are undergraduates. Three have graduated and currently observing the mandatory one-year National Youth Service Corps scheme.”

COVID-19 compounds challenges

A home located on Minister Avenue, Satellite Market, Jos, Plateau State, houses special children brought from different parts of the country.

The operator, Mrs Chidiebere Onyeukwu, relies on aid from philanthropists to provide for the needs of the children but since the outbreak of coronavirus in the country late February, support has dwindled. As a result, she had to send children whose parents are known back to their families pending when donations would start coming in. She stated,

“The challenge of feeding them at this time is enormous. Most of them are now with their parents. We are struggling to take care of others who have been abandoned by their parents. Some of them are from Plateau, Taraba, others are from Kaduna, Kogi and Benue states. Last week, we were out of food. I had to reach out to loved ones who show concerns. They gave us food and soap which had exhausted.

“Many times, I buy things on credit and get tired. It was only about two months ago that we received palliatives from government. They gave each child five cups of rice and snacks each. It really helped that time.

“Out of the 10 special children currently at the home, two of them have autism while one has cerebral palsy. I studied Special Education and with the application of my skills, some of them who could not use their hands initially have started using them gradually. We partner an NGO to get medical care for the children but we have to buy some medicines if the hospital does not have. All these things cost a lot of money.”

READ ALSO: Psychologists Educate Parents On The Steps To Take Towards Handling Kids With Special Needs In A Better Way

Children need passionate caregivers

Taking good care of normal children is no mean feat, but the task is way daunting when the children require special needs.

In such a situation, the caregiver becomes a total carer, devoting more resources and a lot of time, said the founder of a home on Eagle Island, Port Harcourt, Rivers State, Mrs Koko Bassey. She noted,

“In the case of children with cerebral palsy, you are the total carer. The child does not talk or walk. Even when the child is still four or five, you have to clean their diapers because they wear diapers all the time. What we do is to find physiotherapists to help such child to sit up and walk. Some cases are bad while others are not too bad.

“Everything the child needs is by crying and one needs to figure out what the problem is. We always have the challenge of raising them because they are not like every normal child who can help themselves. You must always be with them. Finding carers who are passionate enough to take care of such children is a big challenge.”

Bassey told our correspondent that at some point, she moved a child to her apartment because no one was interested in taking care of him. She added,

“Some carers may ask for more pay which we do not have to offer. At the end of the day, I have to bear the burden. We have children whose parents no longer ask after them. One of them was a boy who could not walk when he was brought in but he can walk now after several surgeries.

“His limbs were shortened as a result of drugs his parent took to abort him. It also affected his growth level. He has a stunted growth. The boy has been with us for eight years now and he is very intelligent.”

Contrasting tales of special children in Nigeria, US

There is no specific, official figure of children living with disabilities in Nigeria but the 2006 census indicated that 3.3 million Nigerians or 2.32 per cent of the population had disabilities.

The figure was questioned as underreported just as the population has increased from 140,431,790 then to about 200 million according to the World Poverty Clock. The 2011 world report on disability said about 25 million Nigerians had at least one disability while 3.6 million of the figures had significant difficulties in functioning.

While survival is hard for about 90 million of the population living below the poverty line, the plight of special children, especially those from poor families, is disturbingly enormous. In many cases, they are abandoned on the streets by parents who could not afford their needs. Sadly, their welfare gets little or no attention in governments’ budgets, as many homes catering to them rely heavily on charity to keep them alive.

Quoting statistics from the National Organisation on Disability and 2007 census, Special Needs Planning, a United States-based organisation providing social services to families that have members living with disabilities, stated that one-fifth of all Americans — more than 54 million men, women and children — have a physical or intellectual disability, while more than 41 million Americans, or about 15 per cent of the population age five and older, have some type of disability. Also about 6.2 per cent of children ages 5 to 15, or 2.8 million kids, reportedly have disabilities.

Unlike children with disabilities in Nigeria, their US counterparts have access to healthcare services and funds to support their needs.

According to America’s Debt Help Organisation, the US government provides Supplemental Security Income as a source of federal funds reserved for disabled children from underprivileged families. A child on SSI received an average of $647 (N245,860) per month with the maximum payment for an individual being $771 (N277,560) monthly.

In most states, a special child who qualifies for SSI will automatically qualify for Medicaid – a joint federal and state programme serving as the single largest source of health coverage in the US.

There are also special needs grants to parents whose children have special needs. For instance, Ben’s Fund provides “grants up to $1,000 to families across Washington State who need financial assistance related to their child’s autism spectrum disorder treatments.”

Responding to an enquiry on the Federal Government’s interventions for children with special needs via a text message, the spokesperson for the Ministry of Humanitarian Affairs, Disaster Management and Social Development, Rhoda Iliya, said the government donated palliatives to orphanages.

She also stated that parents of such children are considered in the ongoing N-POWER – a social empowerment programme lasting two years on a monthly stipend of N30,000. Iliya said,

“The FG has considered parents of children with special needs in its interventions. Example, under COVID-19 lockdown, the ministry donated palliatives to people living with disabilities including parents of such children in Karmajiji, Kwali, orphanages in the Federal Capital Territory.

“In the current N-POWER Batch C online application, people living with disabilities including parents of such children have been considered. PLWDs are considered in all FG Interventions donated to the states.”

But speaking with Saturday PUNCH, the President, Association of Orphanages and Homes Operators in Nigeria, Dr Gabriel Oyediji, said the government needed to do much more in terms of social development of children with special needs.

He said parents abandoned those children due largely to financial constraints, noting that challenges of homes taking care of them range from finance and equipped facilities to shortage of social workers and expensive healthcare. He said,

“In the normal children home, you can get one caregiver to 10 children but at times it is one caregiver to a special child, which has financial implications.

There is also medical challenge because there is no dedicated government hospital for them to receive immediate and urgent attention.

“There should be dedicated hospitals for social welfare of these children. When such a child dies as a result of not assessing rapid care, the carer feels devastated and hopeless. When mortality comes while the child is receiving the best of care, the operator does not really feel bad.

There are also poor facilities in homes with special children. There is the need for facilities that can support children who cannot work or use their hands. Most of the structures on ground are not disabled-children compliant. If there is any one at all in Lagos, maybe at Heart of Gold assisted by the state government.

“The social development of the children is also suffering. They don’t have the opportunity to participate in recreational activities in most of the homes. The education for special children is also expensive.”

Oyediji urged government to take social welfare of the country very seriously, adding that social welfare budget in the country was low. He added,

“Whereas in developed countries that we are trying to copy, social welfare budget is high. The federal and state assemblies should have a compelling desire to create a social welfare budget that will make impacts. There should also be a sub-budget for physically challenged people, especially children and every local government should have a dedicated office for special children where they can get responses if there are emergencies.

“Most parents abandon these children at homes because they are poor and they don’t want the children to die. They don’t have enough means to take care of themselves let alone cater to special children. Rich families have ways of managing special children. Even if they put them in homes, they can still be supporting them.

“Corporate organisations also need to be sensitised to assisting homes, particularly during this covid period. There has been a serious desertion of philanthropists in many homes. Everything is exhausting and people are not coming to make donations. The problem has escalated and there is adjustment in the feeding of the children. We should not look at these children as minors. We should de-stigmatise them.”

 

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