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By 2016, children in the Aradolapo age group had started to sit, walk, speak two and three word phrases or sentences and were soon enrolled in schools to begin their educational journeys. But Aradolapo had yet to meet any of those developmental milestones.
His mother had to be at his beck and call at all times, especially when his siblings were in school. When Mama Ara observed that her toddler could still not walk or crawl at the appropriate time, she sensed that all was not well.
“At six months, he could not sit, at eight months, one year. His legs were not stable, he could not sit, we lay him down all the time. This has been a burden on me,” she said.
“I carried him like that till he was five-years-old.”
Mama Ara, a snacks seller, made multiple trips to public hospitals seeking solutions but the chid’s condition was not properly diagnosed. “From one appointment to another,” she said.
The visit to the hospital became less frequent with time. “I could not carry on because there was no money to carry on,” she said.
In 2020, the now single mother of three went back to the National Orthopaedic Hospital, Igbobi in Lagos after six-year-old Aradolapo became seriously sick. He was finally diagnosed with Cerebral Palsy (CP).
Cerebral Palsy is a leading cause of childhood disability affecting function and development. Aradolapo was also confirmed to be a sickle cell patient.
According to the Cerebral Palsy Alliance, a research foundation based in the US, CP occurs when there is damage to the developing brain during pregnancy, birth or shortly after birth.
“Cerebral palsy affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. This is a lifelong condition and it’s different for everyone,” the website reads.
“While the brain injury that causes it doesn’t change over time, the wear and tear of living with cerebral palsy often means that people with CP experience age-related changes, like increased muscle weakness and decreased balance much earlier than people without CP.
“People who have cerebral palsy may have visual, learning, hearing, speech and/or intellectual impairments.
“Mothers’ burden”
Mama Ara said she and her husband went their separate ways and she became the breadwinner for the children.
During an interview with her, Aradolapo who was asleep on his mother’s laps suddenly began to vibrate non-stop for about three minutes. Mama Ara explained that he was having a seizure, adding that it sometimes caused bodily harm especially when he was alone. He quickly recovered from that episode.
Getting shelter became a herculean task after moving out of their Ikorodu apartment. Mama Ara and her three children presently shelter at a church in Ketu in Alapere area of Lagos.
Mothers usually bear the brunt of care for children with disabilities, a lawyer, disability rights advocate and convener of the LetsCPKidsLearn, Tobiloba Ajayi, said. Ms Ajayi, who also has CP, described it as a social issue, adding that many Nigerians are intolerant.
She said sometimes, these mothers cannot “hold down a (daily) job whilst caring for the child.”
In January, after Aradolapo had clocked nine, he was accepted into a private school through the intervention of LetCPKidsLearn, after many rejections in both private and public schools.
“It was last December that I met a parent who led me to Ms Tobiloba Ajayi. She has been the one paying the school fees,” Mama Ara recounted with a sigh of relief.
“I have been to so many schools, one in Ikorodu, he was rejected because they said that he cannot walk. They said that in case of an emergency, he won’t be able to help himself. And before they will remember that they have a student that could not walk, it might be too late.
“I was unhappy but there was nothing I could do. I approached some private schools, none of them accepted him, they said they cannot be carrying him o. At his age, he wears a diaper. It was too much on me. I wanted him to learn and perhaps, interaction with his peers would also be helpful for his growth.
“I went to one Baptist school in Ketu here, they said they will call me later, another one along this road too, the third one too refused to accept him.”
Ms Ajayi said that in her years of helping children with cerebral palsy to access education in Nigeria, she found out that schools, especially private learning centres, reject children with disabilities because enrolling them does not make “economic sense.”
The advocate, who said she prepares her mind daily for discrimination, noted that in some cases when a child with a disability is enrolled in such schools, other parents might begin to withdraw their kids from the school.
Inclusive education
Worldwide, children with disabilities are among the children that are most likely to be out of school, the United Nations Children’s Fund (UNICEF), an agency of the United Nations responsible for providing humanitarian and developmental aid to children worldwide, said.
They face persistent barriers to education stemming from discrimination, stigma and the routine failure of decision-makers, UNICEF stated.
In an article dedicated to inclusive education, the agency said that every child has the right to quality education and learning.
“Like all children, they need quality education to develop their skills and realise their full potential,” UNICEF said.
Asked if cerebral palsy is contagious, Ms Ajayi who was awarded a Mandela Washington fellowship in 2016, said it is not.
The solution, she said, is not abandonment or keeping them in care homes, but having an inclusive system that requires “attitudinal changes” across all levels of society.
“I have worked with parents who live in Lekki, who live in Ajah working in the multinationals of this country, and are still struggling to find schools (for their wards,)” she said.
Stigma and discrimination must be tackled at the individual level, the she emphasised.
Speaking on inclusive education in Nigeria, Olabimpe Ayoko, the vice-principal (academic) of Queens College in Lagos, said her federal-owned institution runs an inclusive programme.
The educator noted that some privately-owned learning centres might not accept children with special needs owing to discrimination and because they do not have the requirements to cater to their needs.
For example, for a visually impaired student, you need to have braille, she said.
For an inclusive learning centre to run successfully, Mrs Ayoko said it requires specialised teachers, tools and the willingness of the government.
“States should create special schools for such children or within a local government. You can just create a (an inclusive) centre where all those things that will be needed to make teaching effective and efficient for such children to be available because there is no need to run an inclusive school and you don’t have materials for such pupils,” she said.
“Then you have to counsel others (pupils), because definitely there will be stigmatisation…you have to counsel them that they are the same. And it takes a lot to do that and some people are not ready to do that. It has to come from up. It cannot be achieved overnight. It shouldn’t be lip service. Government must br willing, there must be a willingness on the government’s part to really do it.”
Raising a dependent child
While Mama Ara struggled to get her child enrolled into a place of learning, Raliat Oyetunde was able to pick the choicest school for her second child with cerebral palsy in a highbrow area of Lagos.
Formerly a bank official, now a businesswoman, the mother of three seems to be doing well navigating life with her special needs child.
Nabila, 15, was diagnosed with cerebral palsy when she was between six and eight months old after her mother took her to the paediatrician, having observed that she was “floppy.”
The mother of three described raising a child with special needs as a stormy journey. She said she was able to forge ahead and not focus on the pitfalls due to “supportive pillars” put along her way by God.
“I won’t say it was my worst day,” she said, describing how she received the news of the diagnosis. “I would say, it was the day God showed me my calling.”
When Mrs Oyetunde told her boss about her child’s state of health, she was allowed to take some time off her work to figure things out.
Immediately after the diagnosis in Nigeria, Mrs Oyetunde booked a flight for herself, the two kids and a nanny to Dubai. While she looked after her second child at a hospital in Dubai, the nanny looked after her first child.
When the diagnosis confirmed cerebral palsy, she came back to Nigeria and was advised at Lifeline General Hospital to start therapy.
Some months later upon the advice of her aunt, a medical practitioner based in the UK, the mother of three travelled again to meet with another paediatrician.
“It was at the UK hospital that the paediatrician broke it down. What to expect for a lifetime,” she recounted.
“And I remember the old professor said, ‘I’m sorry, Nabila will not be able to walk, Nabila will not be able to talk, she is going to depend on you all for life.
“‘So, to manage it, you are going to do physiotherapy three times a week, you will do occupational therapy three times a week, you will do speech therapy three times a week, each session should be 45 minutes and we will take it from there.
“So, we found a therapist in the UK, we went there for like a week, every gadget the therapist was using, as they were doing it, I was filming it, filming the manufacturers, we packed our bags and baggage again and came back to Lagos.
“And I ordered everything, so, in the house I created a room called Nabila Therapy Room. So, everything she needed for therapy, I kept it there. I wanted to get an unusual result. Nabila started full therapy at the age of 14 months – five times a week.”
Her efforts would eventually pay off when at 18 months, Nabila could use the potty. By two she had started crawling and could walk with the aid of clutches at seven.
Mrs Oyetunde, who is also the chairperson for Cerebral Palsy Centre (CPC), said Nabila spent more than two years in Nursery class before she was promoted. She noted that it hurts her to see her daughter struggle to do things that her mates do easily.
“One moment holds a very special place in my heart, the day Nabila graduated from nursery school to attend primary school. For more than two years, her age mate had left her in the nursery and they went. So, every year, I will go to the proprietor of the learning place, Mrs Adewole, one of our strong supporters of the foundation, and say, ‘Nabila is six and should go to the next class’. But she will say, ‘Nabila’s mom, just calm down, Nabila will go there, there are milestones that we want her to achieve’.
“And truly, the day Nabila wore that academic cap and she used her crutches and they gave her certificates, I broke down and said, ‘Wow, I did it!’ It gave me solace because I was ready to do the next six years of primary school.
“At any point in time, when I am confused or worried, I have a support system, touchpoints, and people that I will call on financially, emotionally and spiritually, because sometimes you need that strength to go on.”
Speaking on sacrifice she made, she said she had to give up on buying ‘aso ebi,’ designer bags, gold just to be able to afford the special care her child needs.
Nabila, who has been enrolled into an inclusive boarding school, hopes to meet Tiwa Savage and get married someday, her mother said.
Mama Ara’s life path has been different from that of Mrs Oyetunde. After Mama Ara’s marriage crashed, she relied on menial jobs to fend for her three children. She sometimes received financial bailouts from strangers who took pity on her son.
Before finding shelter at the church, she said, a “helper” had rented an apartment for her and paid the 12-month rent. When the rent expired, she packed out due to her inability to renew it.
“I have no one but God, ” she said when asked if she had a support system.
For Adedolapo Teslim, a banker, raising a child with cerebral palsy is “expensive, challenging and hurts everyday.”
“It’s not been easy,” she said. “Having to go for physiotherapy is a lot but then we thank God.”
Feranmi, three, started crawling at one year and three months after she began physiotherapy.
Feranmi’s condition, her mother said, could be likened to “a partial stroke.”
“Her CP is not like the regular ones other children have. Her case is like a partial stroke. Her right side is not so active.
READ ALSO: How Bell’s Palsy diagnosis stalled my career for years – Chidi Mokeme
“She can talk, expresses herself and knows what she wants when she wants it.”
When Feranmi clocked two, the parents could not get her a school in their Iyana-Woro residence area.
“We had to enroll her in a school on the Island where the proprietor is a family member,” she told PREMIUM TIMES.
After the interview with Mama Ara, Aradolapo who welcomed this reporter with laughter wept as she took her leave. The mother explained that he hates to see visitors leave.
What mothers can do
Mrs Oyetunde, who runs the Sultana Nabilah’s Cerebral Palsy Foundation (SNCPF) for young CP adults, urged mothers not to “give up their jobs and wallow in pity.”
The mother of three who described herself as a “serial entrepreneur “ said she distributes water and sells ‘Akara’ black soap in order to raise money.
“It is a medical condition, not a curse. It is not a degenerative condition. It is a condition that is lifetim. However, it improves and you get to learn to live.”
Instead of seeing it as a burden, Mrs Oyetunde has channelled her energy to support other children like Nabila so that they can live a “next to normal life.”
“Give them all the necessary support, don’t hide those children, don’t lock them up in the house, bring them out even if they are using diapers, just keep very clean hygiene,” she said.
“Show them love, make them feel wanted. If they are using drugs for seizures, time the seizure, know what triggers the seizure.”
She said she intends to make her daughter “a lady that has demystified cerebral palsy.”
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