interview
The Secret to Raising Children with Special Needs Without Exhaustion
Raising a child with special needs in Nigeria can be extremely tiring for most parents. They also have to deal with strange ideas and theories about what caused their child’s condition, which leads to being excluded from society.
In a recent interview with DAILY ASSET News Editor, Prosper Okoye, the Executive Director of Elsali Care Foundation, Goodnews Emeka-Agadah, discussed the severe consequences faced by these children and shared her secret for managing the stress of caring for them, among other topics.
What is your foundation about?
Elsali Care Foundation was born out of a passionate drive that began during my national youth service days.
At that time, I encountered parents with children who had special needs, and many of them were unaware of their child’s condition or the care they required. Consequently, they would confine their children at home, awaiting their eventual death.I was able to offer assistance in some cases due to my familiarity with the conditions affecting such children, as I had a cousin who had a child with cerebral palsy, a kind of special need. Regrettably, society has yet to comprehend the distinctiveness of these children. My cousin lost her marriage due to her child’s condition, as people attributed the child’s condition to her own wrongdoing, claiming it was retribution catching up with her.
After completing my service, I joined a non-governmental organization that catered to orphans and vulnerable children, but they provided no support for children with special needs.
Upon observation, I discovered that there are numerous such children in society, and their parents are struggling. Many of these parents are unaware of their child’s condition or where to seek help. It was at this point that I told myself, “I possess significant knowledge about this condition, so let me step in and assist them.” That is how the foundation was established.
We advocate for these children since they are vulnerable and unable to advocate for themselves. We are consistently present for them, providing them with protection. Our primary focus is helping these children realize their potential.
Because we’ve known that when they receive proper care from an early age, there can be a significant improvement that enables them to maximize their potential and lead fulfilling lives.
We offer them clinical therapy, educational support, occupational therapy, physical therapy, and behavioral therapy.
We also aim to incorporate vocational support, as it is through this avenue that they can acquire skills to become more valuable members of society. However, currently, we do not possess the capacity to do so.
How can we identify a child with special needs?
Special needs is a term that encompasses both physical and neurodevelopmental disabilities. In our foundation, we primarily focus on children with neurodevelopmental disabilities, such as autism, Attention-deficit/hyperactivity disorder (ADHD), learning disorders and others.
In more concrete terms, although very unfortunate, society often perceives children with special needs as unintelligent because some may have difficulty speaking, while others may exhibit hyperactive and destructive behaviors.
Regarding physical disabilities, we refer to children who are physically impaired, deaf, or nonverbal.
How do you support orphans since you don’t have a home in your facility?
Apart from the special school center, the foundation takes part in community programs. During these programs, we come across some children who, just by looking at them physically, we know need help. And when we dig deeper, we find out that their parents have passed away, and they live with their relatives.
These are another group of children we work with. We assist them through the relatives they live with. For those who are not attending school, we help them get back into school.
Honestly, when it comes to providing for their nutritional needs, I must say we do very little due to lack of funds.
They appear undernourished, but in our small way, we provide them with some provisions through their caregivers because you can’t talk about children without considering their caregivers.
What has the journey been like so far?
We’ve been working behind the scenes since 2013, and we have many memorable success stories. Actually, every child we help is memorable because when we first meet them, their situation is very sad.
Sometimes it’s so bad that we can’t help but cry, especially when we see their parents’ tears and frustration.
Most parents tell us that their child was born healthy, just like any other child. But around the age of one or two, the child starts losing all their thinking and learning abilities.
The parents feel very frustrated and wonder if it’s some kind of magic or curse from their village. But after talking to them, they start to understand over time.
Despite the financial burden and surprisingly, the negative attitude from the public, we keep going because of the many successes we’ve achieved over the years.
For instance, when we go to some places to raise awareness about this condition, we often face rejection because people think these special children don’t belong there.
But they don’t understand that other children, in fact everyone else should learn how to relate to and treat children with special needs.
These children face discrimination from their own relatives and other children who should be their friends.
Some schools don’t want to accept them, and even when they do, they keep them separate from the other children.
We object to this unfair treatment and try to make people understand that they need to think like the special child does to understand why they act the way they do.
We have an amazing story of a 15-year-old child with Down syndrome. When he first came to us, he couldn’t do anything. We started helping him by teaching him to use the toilet because it was so bad that he would eat his own waste if left alone.
We also did many other therapies with him, and within just a few months, he started improving some of his behaviors. We even managed to help him stop using diapers.
There are other numerous success stories like this one. Indeed, just knowing that we could help a child and ease the burden for their parents brings us a lot of happiness and fulfillment.
What exactly could cause a child who is born without any issues to experience regression?
It is a neuro-developmental issue. It’s similar to when we have malaria and experience certain symptoms. For some children with autism, we notice these symptoms, which we refer to as red flags, as they grow up.
It is a condition that exists within them and influences their behavior, not something caused by external factors like their village people.
Some regressions can be attributed to a lack of essential vitamins or the presence of excessive mercury in their bodies. Others may be linked to low levels of certain microorganisms.
While ongoing research is being conducted, some regressions can be traced back to genetic conditions.
Additionally, problems during delivery, such as improper handling or prolonged labor, can also contribute to regression. The age of the parents can also play a role. Older parents have a higher likelihood of having a child with Down syndrome.
How do you cope with exhaustion while taking care of these children?
The issue of children born with special needs is of utmost importance to address as a matter of public concern. Approximately 10 out of every 50 children born each year are likely to have some form of special needs.
Furthermore, it is expensive and challenging to solely provide care for these children, even for parents with substantial resources.
We face numerous challenges as an organization, but the primary one is the lack of public awareness, which leads to stigmatization.
We require assistance in raising awareness to inform the public that these children with special needs are just as human as anyone else. They have emotions and experience pain.
Additionally, there is a need for improved implementation of policies by the government. While laws and policies exist to prevent discrimination, there is a lack of mechanisms for effective implementation.
Furthermore, we lack sufficient personnel in this field. Several individuals have come to work and volunteer to help the children, but they often cannot stay due to the demanding and strenuous nature of the work. In some cases, it is because the remuneration is not adequate for them, but we can’t help it because of the unavailability of funds.
For me, what prevents exhaustion is the love I have for what I do. If I were not motivated by financial gain, working with children with special needs would still be a job I would choose and strive to excel at. I see them as my own children.
However, I cannot do this job alone; we need stakeholders to assist us in extending these services to rural areas and other hard-to-reach places.
We require funds to train and motivate individuals to join us in the mission of reaching out to these special children, as it is not their fault that they were born this way.
It is also crucial to train parents on how to raise these children.
We must raise awareness in society to create more inclusive opportunities in schools, workplaces, and all other spheres of society.
We need more partnerships.
Children with special needs can grow up to become professionals, although they may lean more towards artistic pursuits and display greater inventiveness. Many celebrated musicians and footballers, such as Ronaldo, were actually children with special needs. Therefore, early interventions are crucial as the brains are still developing.
Dr Martins Egot is Executive Director of Panacea for Developmental and Infrastructural Challenges for Africa Initiative (PADIC-AFRICA), In this Interview with DAILY ASSET Correspondent, PATRICK ABANG in Calabar, he spoke on a wide range of issues Concerning Cross River National Park and Community Forest. Excerpts
The Federal Government recently gave license to two firms to mine the Cross River National Park, what is your take on this?
Apart from the fact that the environmental organisation is very concerned about the environment of Cross River State and it’s forest communities, we have been in very close partnership with the Cross River National Park for over ten years now.
They have been part of building capacity of our community eco-guards that we train and support to take care of, manage and carry out surveillance and protection of community forests. The National Park has been very cooperative and they have been seeing results from our partnership but this same National Park is being encroached. For example, in Ofumkpa, where this mining activity is really happening, for two years now we have been having joint patrols with the National Park officers, Rangers and the community eco-guards that we put together in Ofumkpa and they have been protecting the forests together. But suddenly, we hear that there is licence given to companies to mine, there is so much disaster in that place and for us, it is very disheartening.What is your concern?
Our major concern is that for over eight to 10 years now, Cross River state has been suffering from deforestation, degradation and timber exploitation recklessly, without control. We have been fighting this throughout with all our might and it has not been easy because we have lost so much in the forest. We have three forest regimes in Cross River state. These are Community Forest, National Park and the Government Reserve. The community forest and the government forest reserve, which are under community and state government management, have come under serious attack and we are losing them massively. Our hope in Cross River State forest is the National Park, that is why we have the bulk of forest left but if we do not take our time, the experience we have within the last 10 years in the community and government forests, is coming over to the National Park.
As we speak, there are several areas that mining is happening in Cross River State except the National Park. Mining is coming into Cross River State massively and now, they have entered the National Park which is a big worry. If we do not take things more seriously in the National Park, there will be a disaster there and Cross River State will have nothing to show in forest because we do not know how to manage the community and government reserve forests that we have. Government institutions are not helping matters, so that is the major worry that made us make noise and tell people about it in order to stop the anomalies.
Is the National Park fulfilling its mandate?
The National Park Service Act (2006) unequivocally underscore that national parks are sanctuaries meant exclusively for the propagation, protection and management of vegetation and wildlife. Notably, Section 22 of the Act delineates the functions of Management Committees, reinforcing the exclusive dedication of national parks to the propagation, protection and management of vegetation and wildlife.
Section 29, clearly makes an offence for any unauthorised person to go into the National Park without the permission of the Conservator-General. Mining activities are explicitly prohibited in section 30(1) of the Act” which says, “a person who, unless authorised to do so under this Act or the regulations under this Act, carries out an undertaking connected with forestry, agriculture, grazing or excavation or does any levelling of the ground or construction or any act tending to alter the configuration of the soil or the character of the vegetation; or does an act likely to disturb the fauna or flora; or engages in drilling, mining, prospecting or exploration of any kind of natural resources.. Is guilty of an offence.
The National Park therefore has the mandate to manage and protect the National Park and the Federal Ministry of Mines and Steel Development should not in anyway, give out leasing rights to any mining company in the National Park and they know this. We are trying to get to the appropriate authorities to ensure that this is reversed as soon as possible. As we speak, it is still happening in Ofumkpa.
What are the benefits of the National Park to the state and the people?
Even as environmentalists, we are not completely in anyway opposed to government making money from resources that they have but we are saying that things should be done rightly. The status of Cross River State nationally and internationally, as custodians of the highest and remaining rainforest in Nigeria, is there. They ought to be ecological benefits, international recognitions and even funding to gain from this. At some point, discussions are on the way to begin to pick community and state benefits for having their forests intact. If we do not show working to show that we are compliant to conservation and protection, then we would lose out of it. Conservation is not completely saying do not make money from it, it is saying let us do it in the right direction and the proper way. We have always told people, timber dealers and community people to do the right thing by ensuring that they know the numbers of trees that they are extracting from the forests and ensure that they are of marketable size approved and following best practices as they would still make money from that. The National Park is a reserve that can give us funds from eco-tourism and we would still have our forests intact at that level.
For the Federal government to designate National Parks, they are for ecological, ecosystem benefits and tourism. Our sons, daughters and people from Cross River state are also being employed and they get salaries being paid as staff of the National Park.
Some persons have argued that the National Park is of no benefit to the people and the state, what is your view on this?
You cannot monetarily quantify what you have in the forest, apart from the ecosystem services which is life itself. But if you do real tourism projects in the National Park, there is no way Cross River State would not be making millions monthly from eco-tourism. There are lodges and people come in there from different areas and we make foreign exchange from that.
What is the size of the National Park?
Looking at the Ekuri axis, we have over 50,000 hectares that is for National Park and there is also the Oban axis, bringing the National Park to over hundreds of thousands of hectares, even though some parts of this are suffering from encroachment as we speak.
Any specific threat to the communities?
Yes. At some point, we pity them and want to reason with them, even though they are not completely right. I have been engaging directly with the Ofumkpa people, we have been working closely and they have been part of our patrols, listening closely to our conservation debates and discussions and they participate. When this happened, we took them on and they said they are accepting these people because they are promising roads, schools, employment and little stipends for working with them at the mining site. These are the things that really pull and push communities to be part of it and we do not blame them, it is life survival as a community because these communities have no good roads nor schools and the people there are so poor. Our governments that are supposed to be supporting communities with all these amenities, are not forthcoming. Again, the National Park authority that is supposed to be empowered to engage well in these communities and provide for the communities, are actually not doing that. We talk about livelihood but what degree of livelihood projects are we pushing to these community people? We empathise and sympathise with the community people and so in that direction, I will be calling on the Federal and state governments, even international NGOs to intervene.
As forest communities embrace illegal loggers and miners to enhance their livelihood, what would you proffer as a solution?
If we must succeed in protecting the National Park, community and state forests, we need to engage adequately with community people, ensuring that we know their problems and support them in solving their problems. If we do not look at livelihood very strongly in communities, our fight would continue and we would have a problem interacting with them. As we speak, I hear they are chasing people because they think those people are coming to deprive them of making money from these companies. Going forward, I think government and international non -governmental organizations (NGOs) should sit on a round table and engage these communities by targeting individuals and households and within two years, be able to check and assess how they have built the livelihood capacity of certain family heads.
These are the kinds of things that would help us win this struggle because the struggle will continue in Cross River State forests.
Mr Moyosore Ogunlewe, Executive Chairman, Kosofe Local Government says his administration is irrevocably committed to the welfare and well-being of residents and will continue to do its best to positively impact lives in the area.
Ogunlewe made the statement at a programme to commemorate the second anniversary of his administration in Lagos.
Ogunlewe said the distribution of the items, such as rice, beans and yam, and launch of “Kosofe Food Bank“ were part of the council`s interventions to cushion the effects of the removal of fuel subsidy by the Federal Government.
“We are launching Kosofe Food Bank to assist our people here in Kosofe with foodstuffs in order to alleviate the burden of fuel subsidy removal.
“When we were given this mandate, we promised the good people of Kosofe
that we would erase poverty and all forms of human miseries and usher in success, liberation and renewal of hope.
“What we are doing today is just a step in that direction“, he said.
Speaking on plans of his administration for the next two years, Ogunlewe said his administration would continue to be about service to the people and would always carry them along in the scheme of things.
The council chairman added that he would fashion out policies to make his administration inclusive and participatory .
“By this, we will make people the centre -piece of our administration, they will be involved in our day- to day management through their suggestions.
“And we shall create suggestion boxes in various wards and area offices for people to air their views, which will help shaping our policy formulation,” he said.
The chairman said that his administration would also hold periodic town hall meetings to interact with the people to know their needs.
He added that the commitment of his administration to reinventing the local government area was irreversible .
“Our administration will not relent in its efforts to ensure that we touch every area of needs. Our construction works took off immediately we assumed office.
“To God be the glory, we have embarked on series of projects such as Primary Health Care Centre at Oworonshoki Ward A in collaboration with Access Bank Plc .
“We have constructed a new customary court and administrative offices.We have also done massive grading of roads at Mechanic Village, Ogudu.
“Education is key and very dear to our administration, and we have made our impact felt in this sector.
“We distributed free 150 GCE e-pins and completed registration for 150 beneficiaries at the maiden edition of in 2021,” he said.
Ogunlewe added that the council distributed 300 GCE e-pins ,1000 JAMB/UTME e-pins and completed registration for 300 beneficiaries in 2022.
In the area of health , Ogunlewe said his administration had procured ambulances to improve service delivery in Primary Health Centres in the area.
“We have also been fueling generators in all Primary Health Centres to ensure 24 hours supply of electricity.
“We have provided toll- free ambulance emergency number : 09093000011, for rapid response .“,he said.
The chairman said his administration had provided 1,900 glasses to people in need and had treated residents with eye problems such as glaucoma and cataract ,after screening.
By Prosper Okoye, Abuja
Seven-year-old Angela David has been rescued from her wealthy employer, Mary Mohammed, who had cruelly beaten her every day during the eight months they lived together. This has resulted in severe medical complications that endangered her life.
“The doctors at Adamawa State Specialist Hospital, who examined her, said that one of her kidneys could not be located.
The kidney they did find was infected and her liver was enlarged. She was also diagnosed with Hepatitis B,” said Farah James, Coordinator of NEPWHAN Adamawa chapter, in an interview with DAILY ASSET.Obtaining justice for the victim appears to be highly unlikely due to the influence and connections of the alleged perpetrator.
The perpetrator was granted bail after the initial arrest, and the case was unjustifiably dismissed by the Adamawa State police headquarters.“When the coalition of civil society organizations involved in the case approached the officer on duty to inquire about it, they informed us that they were aware of it but the woman had been discharged and the case file was closed since the victim’s mother has forgiven her.
“When we asked for further details, they explained that they were not the ones who handled the case and the officers who did were unavailable,” Farah explained.
Angela David, whose parents had separated, was taken by Mrs. Mary Mohammed living at off Abuja road, Yola South, Adamawa state, with the promise that she would send her to school and care for her as if she were her own daughter, as she was unable to have biological children.
“She never sent the girl to school; instead, she turned her into a domestic maid who cleans the house, washes her car, and runs errands for her,” Farah said.
She added, “When we asked Angela if she wets the bed or steals, she said no. that her only offense was not completing her chores on time.
“As punishment, Mary would use a cable to hit her and make her kneel down for extended periods, which resulted in blisters on her knees and disfigured fingers. Moreover, Angela was only fed once a day, which explains her malnourished appearance.”
Angela’s mother said she initially accepted to close the case when she was told by the private hospital doctor that her baby was fine and would recover in time.
She also mentioned that the perpetrator’s family merely gave her some cups of rice, a bottle of oil, noodles, and 8,000 Naira to send her daughter back to the village after she was discharged from the private hospital in Yola.
Angela’s family, along with the women’s civil society group, is seeking justice. They have written a petition to the Human Rights Commission.
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