In this report, GODFREY GEORGE examines the difficulties and stigmatisation of parents with special needs children
The street that leads to the Edafes home is scanty. A few single buildings dotted the neighbourhood — one here, another there as though the occupants had rifts to settle.
A shoe shiner, Sani Aminu, sat outside the grey-coloured gate that housed 14-year-old Esther Edafe and her nine-year-old sister, Margaret, who are both living with cerebral palsy and Down’s syndrome.
Aminu was listening to a radio station and arguing politics with himself simultaneously. On sighting our correspondent, he reduced the volume of the radio set and gestured at this reporter, who had called earlier, to come closer.
“Good day, Sah. My madam say make I wait for you for outside gate, Sah. You are the journalist?” he asked, with a strange accent, struggling to piece the English words together.
Our correspondent’s response in Pidgin English calmed him down a bit as he opened the double lock gate and led this reporter to the large compound housing a yellow-painted three-bedroom bungalow.
Three kids were playing football outside and a lady was washing clothes in front of a tap nearby. She gave our correspondent a quizzical look, as they both exchanged pleasantries.
Aminu led this reporter to the sitting room of one of the flats, a one-bedroom, and called Mrs. Edafe, who was cooking chicken stew; the aroma filled the air.
Two girls sat aloof afar on the passage. One was in a carrier; the other had a feeding bottle in her mouth, which she refused to suck for the minutes our correspondent observed her.
“Those are my lovely girls,” Mrs. Edafe said, pointing in the direction of Esther and Margaret.
“They are my world, my everything. One is 14, the other is nine. They both live with Down’s syndrome and cerebral palsy together,” she sighed deeply, as she excused herself to go back to the kitchen to finish up her cooking.
The place had become uncontrollably hot and Mrs. Edafe opted for the meeting to be moved to the passage for the room to cool down a bit since there was no power supply.
She pulled Esther as she rolled Margaret alongside. They struggled for a bit before they eventually agreed to move.
From banker to housewife
As Mrs. Edafe settled into one of the seats Aminu had arranged outside, power was restored and she moved the meeting back inside.
The sound of the fan resonated with the tone of her voice as she shared how she dumped her banking job to become a home teacher for her children after her husband abandoned home to start another family.
“I had nothing else to do, nowhere else to go,” she said, as she adjusted properly into the armchair she sat on, stealing glances at her kids as they hummed some sounds.
She lifted Margaret and sat her on her left lap, grabbed the feeding bottle, and started feeding her.
Margaret was quiet for a while before she started to struggle. Mrs Edafe gave a quiet nod and let out a large grin.
“That is how she is. She does not like to eat. One has to force her to do everything. It is one of the things the doctors said I would help her do for a long time until I am sure she can do it herself,” she added as she dropped Margaret on the tiled floor and reached out for Esther, who had begun to cry.
For a moment, Mrs. Edafe was puzzled about what to do but later realised that Esther had pooped on herself and did not know how to say it.
Embarrassed, she excused herself yet again and went inside to clean Esther up, apologising for the ‘inconvenience’.
She returned, but this time, without Esther. When asked, she said she had put Esther to sleep.
“The young lady disturbs me too much. She likes attention, too,” she said, adding a forced laugh.
“I have a master’s degree in Business Administration. I got my master’s even before I got married, and I worked with a new-generation bank in the accounts department. But when my first child came and I found out she was not like any other child, I knew I had to stop whatever I was doing and be there for her.
“Her father was the one who suggested that I quit in order to take care of things back at home, and it broke me so much because I was already heading for a promotion. But, what do I do?” she asked.
Her eyes had reddened and moistened up, welling up tears.
She looked at Margaret again who was now crawling all around the house and singing to an unknown tune.
She let out yet another forced laughter.
Mrs. Edafe said when she gave birth to Esther, it was not an easy birth. The baby had come a month early than expected and had come out with her hands instead of her head.
“I was cut open down there before they could let her out and the doctors said she had lost so much blood already and might not make it. It is even a miracle she is still alive,” she added.
The child was then placed in the Intensive Care Unit of the clinic for one month to monitor her progress, while the mother healed from the process.
She said a few days after she got home, a relative asked her why her baby never cried.
Two years later, the child never spoke or walked. She was being carried by her mother everywhere.
On Esther’s second birthday, Mrs. Edafe recounted that a neighbour, who had come to celebrate with her, said in prayers that God should ‘wipe away this reproach’ from the family.
“The embarrassment consumed me. I opened my eyes and my husband was looking at me. Esther too had become quiet as though shocked at the woman’s prayers,” she added.
She swore that she would make sure she got the solution to the ‘reproach’.
Many suggestions, no remedy
Although told by medical practitioners that the child had Spastic Cerebral Palsy – one of the groups of childhood disorders that affect a child’s ability to move and maintain balance and posture – and Down’s syndrome – a condition in which a child has an extra chromosome – Mrs. Edafe sought other remedies.
She said she met a friend who told her about a spiritualist ‘who specialises in this kind of thing’.
“The prophet told me everything I knew about myself, including where I was from, but I got no remedy after paying thousands of naira,” she said, shrugging her shoulders.
She said she went to many other churches with Esther and they prayed and fed her child with many ‘anointing ointments’, but nothing changed.
On visiting the hospital after the fifth year, the doctors confirmed to her that the situation had worsened as Esther now had a tumour in her brain.
“We left the other issues and started battling tumours. It lasted for almost two years until she had her surgery and was confirmed okay. I got pregnant again. I don’t want to call it a mistake but it wasn’t what I wanted at that time, considering all I was going with,” she added.
While speaking to our correspondent, Esther let out a loud cry from inside and Mrs. Edafe rushed in with the speed of light, carried her out and took her to the bathroom.
After a few minutes, she took her back inside and came out to say she was asleep.
Continuing, Mrs. Edafe said she was scared of her second pregnancy and she stopped cooking and spent time exercising and reading books, as many had suggested.
She was, however, greeted with shock when Margaret was diagnosed with Down’s syndrome and cerebral palsy like her elder sister.
“I broke down. I was not able to hold my child for days. I expended breast milk and one of my pastor’s wives whom I have come to respect so much would feed Margaret and make sure she was full. That woman was God’s sent,” she said, looking at a picture of Margret and Esther on the TV stand.
Rejection in schools
All the schools she took Margaret and Esther to, Mrs. Edafe noted, said they could not care for them.
“I suffered searching for a good school for my girls. For more than a year, no school I went to wanted to take them in. The one who wanted to because of the extra money returned them after a few weeks. It was frustrating for me being a single mother and a stay-at-home mom.
“I used to sell clothes but moved my physical shop online so I could not afford the time to stay with them 24/7 even though I really wanted to,” she stated.
She, however, employed a teacher, whom she alleged was molesting her girls in her absence.
“My kids could not talk so I needed someone who would teach them simple sign language so I got a teacher. To my surprise, this man was touching my girls indiscriminately. I didn’t know until I noticed the way Esther behaved when I bathed her and touched her private parts.
“I set a trap for him and he fell for it. I reported the case to the police, but somehow, since I couldn’t pursue it, the matter died down naturally,” she added, with a disappointing tone.
According to the American Centre for Diseases Control and Prevention, Cerebral palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture.
CP is the most common motor disability in childhood. Cerebral means it has to do with the brain while palsy means weakness or problems with using the muscles.
It has been identified by developmental psychiatrists and childhood consultants that CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles.
There is no known cure for the condition, but treatment can improve the lives of those who have the condition. It is important to begin a treatment programme as early as possible.
A UK-based nurse, who specialises in treating children with autism, Mr. Rasine Ibe, in an interview with our correspondent, said symptoms for cerebral palsy might vary from person to person.
“A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all and might need lifelong care.
“A person with mild CP, on the other hand, might walk a little awkwardly, but might not need any special help. CP does not get worse over time, though the exact symptoms can change over a person’s lifetime.
“All people with CP have problems with movement and posture. Many also have related conditions such as intellectual disability, seizures, problems with vision, hearing or speech; change in the spine (such as scoliosis) or joint problems (such as contractures),” he said.
The signs of CP, according to the CDC, may also differ greatly because ‘there are many different types and levels of disability’.
The main sign that a child might have CP is a delay in reaching motor or movement milestones (such as rolling over, sitting, standing, or walking).
The following are some other signs of possible CP; children without CP might also have some of these signs.
“In a baby younger than six months of age, his/her head lags when picked up while he/she is lying on his back. He/she feels stiff. He/she feels floppy. When held cradled in one’s arms, he/she seems to overextend his back and neck, constantly acting as if he is pushing away from one. When picked up, his/her legs get stiff and they cross or scissors.
“In a baby older than six months, he/she doesn’t roll over in either direction. He/she cannot bring hands together. She has difficulty bringing her hands to her mouth. She reaches out with only one hand while keeping the other fisted.
“In a baby older than 10 months of age, he/she crawls in a lopsided manner, pushing off with one hand and leg while dragging the opposite hand and leg. He/she scoots around on his buttocks or hops on his knees, but does not crawl on all fours,” part of the publication read.
Diagnosing at an early age is important to the well-being of children and their families.
A childhood consultant and special needs tutor, Mrs. Nara Bianze, divided the diagnosis and evaluation into developmental monitoring, development screening and development and medical evaluations.
“Developmental monitoring (also called surveillance) means tracking a child’s growth and development over time. If any concerns about the child’s development are raised during monitoring, then a developmental screening test should be given as soon as possible.
“During the developmental screening, a short test is given to see if the child has specific developmental delays such as motor or movement delays. If the results of the screening test are cause for concern, then the doctor will make referrals for developmental and medical evaluations.
“The goal of a developmental evaluation is to diagnose the specific type of disorder that affects a child,” she said.
Causes, risk factors
Although no single cause is known, CP is mostly seen to be caused by abnormal development of the brain or damage to the developing brain that affects a child’s ability to control his or her muscles.
“People used to think that CP was mainly caused by lack of oxygen during the birth process. Now, scientists think that this causes only a small number of CP cases,” Bianze said.
The CDC added that the abnormal development of the brain or damage that leads to CP can happen before birth, during birth, within a month after birth, or during the first years of a child’s life, while the brain is still developing.
“The majority of CP (85 per cent to 90 per cent) is congenital. In many cases, the specific cause is not known. A small percentage of CP is caused by abnormal development of the brain or damage that occurs more than 28 days after birth. This is called acquired CP, and usually is associated with an infection (such as meningitis) or head injury,” part of the CDC publication read.
The CDC stated that Down’s syndrome is a condition in which a child has an extra chromosome.
Chromosomes, which are known simply as small “packages” of genes in the body determine how a baby’s body forms and functions as it grows during pregnancy and after birth.
Ibe, speaking on the condition, said, “Typically, a baby is born with 46 chromosomes. Babies with Down’s syndrome have an extra copy of one of these chromosomes known as ‘chromosome 21’. A medical term for having an extra copy of a chromosome is trisomy. Down’s syndrome is also referred to as Trisomy 21. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby.”
The CDC noted some common physical features of Down’s syndrome included a flattened face, especially the bridge of the nose, almond-shaped eyes that slant up, a short neck, small ears, a tongue that tends to stick out of the mouth, tiny white spots on the iris (colored part) of the eye, small hands and feet, and a single line across the palm of the hand (palmar crease).
Others include a small pinky fingers that sometimes curve toward the thumb, poor muscle tone or loose joints, shorter height, among others.
‘My seven-year-old son still wears diapers, doesn’t speak’
Soulful singer, Joy Odiete-Eseoghene, better known as J’odie, is another mother to a special child with cerebral palsy, Chinua.
The seven-year-old has not spoken a word since he was born, as he is still being wrapped in diapers.
The singer, who released a beautiful song ‘Kuchi Kuchi’ in 2010, told our correspondent that life had been an ‘interesting journey with ups and downs’. “I am still on that journey,” she added.
Many thought her song, Kuchi-Kuchi, was for a lover, but she stated that it was a song of love from a mother’s perspective. Surprisingly, she made that song some years before she had Chinua, a special child, who was born in 2016.
Speaking about what it was like having Chinua, J’odie said it had been the best feeling ever.
“Many people share words of encouragement sometimes when they see me physically or online, and I understand why. This is because the challenges that come with having a special-needs kid, especially in this part of the world, are enormous.
“But on the flip side, I dare say a ‘regular’ parent may never be able to appreciate the depth and intensity of the love and passion that I feel for my son, Chinua. It’s not because of me. It is because of him. He softens my heart and makes me tough all at the same time. I am a different person since I became his mother. I am fortunate and I am forever grateful to God for my son.
“He has never said a word in his life, but he has spoken volumes already. No motivational speaker in my life could have been able to make me achieve what Chinua has made me achieve just by being special. He has made me more empathetic.
“He has also made me excited about life. I am more driven, too, all because of him. I am ever-conscious of the limited nature of time I have and this pushes me to do all I can to live and to keep cycling as much as possible both for his sake and for mine,” she said, with a tone of certainty.
She said she knew Chinua, who would clock seven on April 9, was a child with special needs the day he was born.
“It was obvious there were complications already. He didn’t cry for nine hours. The hospital where he was born claimed not to have enough oxygen.
“After a while, we were referred to another hospital, where he was admitted for 10 days,” she added.
For her, through it all, she thought he would get ‘better’. In fact, as a baby, J’odie said she appreciated the gravity of his diagnosis.
“I didn’t understand or accept the reality of the statement the doctors we visited told me. They’d always say, ‘This is a life-long journey.’
“It took me some years to fully come to terms with it and raising a special needs child like Chinua is indeed a life-long journey that I am willing to take,” she noted, punctuating her words with short strings of silence.
She noted that her faith in God shook as she already had a picture-perfect idea of how motherhood would look for her.
“I was shaken initially but I am learning and growing. This is my journey and I have embraced it with all my heart. I have no regrets whatsoever,” she added.
Taking care of a child with special needs like Chinua can be financially draining but J’odie has had strong family support and her God-given talents to thank for the success so far.
She sings for events while she manufactures her premium natural hair care products, Kuchi Hari.
“I just keep on keeping on. Whenever I get tired, sometimes, I cry. Then, I rest. After a while, my strength comes back and I keep on running,” she said.
Blame on mothers
Mothers are often blamed and accused of attempting an unsuccessful abortion when they give birth to children with special needs.
For a childhood consultant and educationist, Mrs. Chidinma Abiakalam, this has made mothers blame themselves for far too long for something that is not entirely their fault.
J’odie said it was ignorant to think that every special needs child became the way they were because of one certain cause.
She said, “It could be genetic or caused by childhood ailments such as untreated jaundice and the like. It could also be asphyxiation during delivery. It could be anything. I just encourage mothers who are wrongly accused to stand strong and keep loving their beautiful children in spite of the negativity.
“People talk badly about other people. We do not have control over what people think or say about us. But we can control how we feel inside and how we live. I have learnt that trying to convince people, sometimes, is futile.
“I learnt that the hard way. So, now, I simply focus all my attention on what is good for me, my son and the people within my small circle of care as much as I can. If those naysayers change their thoughts later, great! If they don’t, great! I am just grateful they don’t control my oxygen supply.”
J’odie had, for seven years, walked this path alone as Chinua’s father reportedly left the marriage after his birth.
Although the sonorous singer declined to speak further about this, she simply said, “Marriage is a good thing. Being single is also a good thing.”
‘Strangers advised me to kill my child’
She also noted how strangers would walk up to her, asking her to kill or abandon her child because of his condition.
“How could I have abandoned a child like mine? Have you seen him? Merely looking at him alone makes you believe everything is right with the world. I am grateful to God that I have a mind of my own.
“My parents brought me up with lots of love and diligence. Being a mother has made me realise how selfless and sacrificial many parents are towards their offspring,” she added.
According to J’odie, being a mother to a special needs child has changed her perspective of life.
After keeping to herself for six years, she said she needed a community of other mothers to help her fight.
“I was practically fighting and keeping up with the bills until something broke inside me. In spite of all the support I had, it was tough.
“I then began to imagine how other women without the kind of support I had were faring with such kids. It evoked from social media soliloquy about being a special mother.
“I mirrored the challenges, wrote an open letter to Nigerians and now it has become an organisation, reaching out to kids like my son. It is really fulfilling. It is not about being called a good woman. It is about the realisation that because of my son’s life, good things are happening,” she noted.
So far, Chinua Foundation has made assistant gadgets, medication and financial support available to families with special needs kids in Nigeria.
The singer stressed that she would love her son, this year, to receive a well-paying endorsement deal from a leading diaper company.
She added, “We have been buying diapers for seven years and counting! Jokes apart, it is a statement of inclusion. Children with special needs should be embraced by brands, too. The media should help change the minds of people about this from negative vibes to positive ones.”
Ahmed: Autism, cerebral palsy, ADHD combined
Eighteen-year-old YouTuber living with autism, cerebral palsy and Attention Deficit Hyperactivity Disorder, Ahmed Salami, became a social media sensation after videos of his YouTube sessions with his mother, Rafatu, went viral.
Rafatu, an Abuja-based journalist, said Ahmed suffered brain damage due to a delayed blood transfusion when he was born.
She said, “Ahmed was not born the way he is. He developed autism, cerebral palsy and Attention Deficiency Hyperactivity Disorder, commonly known as ADHD, along the line.
“His birth was normal like that of any other child. He was not my first child, so there was nothing really spectacular about the delivery process.”
The only thing that was different for her was the colour of his skin. There was something worrisome about it.
She drew the attention of doctors and nurses to it, but they told her not to worry; that it was physiological and would clear off after a few days.
Four days later, his skin did not become normal as they had assured her; it got thicker.
She opted to take him to another hospital in Lagos, where doctors recommended he be put under a fluorescence bulb.
“But when we got home that evening, my neighbour, who is a doctor, saw the condition and said it might not be as simple as we were taking it. He advised I brought him to the hospital the following morning. Surprisingly, an hour after he left the house, the child went into a coma,” she said.
She rushed him back to the hospital with her doctor neighbour, who took them to Marcy Children Hospital, Lagos, where interventions were done.
Two blood transfusions were made and Ahmed was placed on life support. He was only four days old then.
By the time she left the hospital, the doctors were already certain that he had some brain damage but they didn’t know how it was going to work out for him.
“In fact, at some point, some of the doctors suggested I ended it there (kill him). They asked me to allow him to go, but I told them I would not. I couldn’t get myself to let him pass on. I told them I wanted my child alive and that I would accept any outcome from the process,” she said.
During the process of moving Ahmed to another hospital for better care, things got worse and he needed another transfusion, which he couldn’t get.
“My child didn’t get blood on time. He didn’t. If he did, I am sure it wouldn’t have been this worse. But we thank God,” she added, with a voice laced with pain.
Speaking on how she had managed to care for Ahmed, she said, “I have to be honest with you, it has not been easy; it has not been a bed of roses. It has been a rose full of thorns, but I am grateful to God for strength because I know it would have been worse.
“(I have made) a lot (of sacrifice) for him. I dropped out of a master’s degree programme because I registered and discovered that there was no way I was going to care for him and continue the programme. I have refused travel opportunities because I would not be able to do it while raising him. His bill is three times the rest of us combined. So, all of our resources go to him.”
For her, she saw possibilities in him, worked with many medical and psychotherapy options, and today, Ahmed makes educational and inspirational videos on Youtube.
Autism Spectrum Disorder, according to Ibe, is a developmental disability caused by differences in the brain.
People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviour or interests. People with ASD may also have different ways of learning, moving, or paying attention.
Ibe said it was important for mothers to know that autism was a condition or disability that the child will live with forever and this disability will affect a child’s communication, social interaction, behaviour and ability to adapt to changes that occur in everyday life.
“A simple thing like changing the direction/position of a TV set can be a source of anxiety for a child living with autism because it is something he/she cannot do,” he said.
In light of this, Ibe noted that it was important for parents, particularly mothers, to understand these aspects that can be greatly affected when a child has autism.
“They need to meet up with the needs of these children as concerns their communication since that is one area the condition affects – the child can either be dumb or deaf or both.
“Communication aid should be provided for this child. It is also imperative that the parent and child take sign language classes just to ensure a free flow of communication between them,” she added.
The educationist, Abiakalam, said learning disabilities for children with special needs come in different forms.
“This has to do with the ability of a child to accept information, interpret, comprehend and relay as feedback the information. Anything that hampers that flow can be said to be a learning disability,” she added.
She identified dyslexia, dyscalculia and dysgraphia as common learning disabilities the children might face.
Dyslexia has to do with the ability to understand and comprehend anything that has to do with literacy — words, sounds, letters, reading and writing.
People who have dyslexia often deal with issues around letters and comprehending anything that is written.
People with dyscalculia always have issues with figures — arithmetic, Mathematics, Excel, calculus, and the like.
Dysgraphia is a learning disability where they have issues with structures, designs, curves, drawings and straight lines.
Abiakalam said, “People who have issues with sounds and tones that are not able to decipher pitches and inflections are also a learning disability. There’s also a learning disability that affects the perception of dimensions. Sometimes, this learning disability can tamper with a particular sense organ. Some may be visual or auditory.
“As a result of ignorance and superstition, most teachers do not really understand how to care for a child with psycho-neurotic issues. Because of the stigmatisation, ridiculing, alienation, oftentimes, parents are embarrassed and feel guilty for not being able to show off their kids.”
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