Heroes of motherhood: Experiences of raising special needs children
The odyssey of a mother raising a child with special needs in a resource-restricted country like Nigeria is one marked by resilience and strength. It’s a journey filled with sacrifices and moments of profound isolation. In this report, Weekend Trust recounts experiences of mothers with special needs children. “As an 18-year-old, raising a child with […]
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The odyssey of a mother raising a child with special needs in a resource-restricted country like Nigeria is one marked by resilience and strength. It’s a journey filled with sacrifices and moments of profound isolation. In this report, Weekend Trust recounts experiences of mothers with special needs children.
“As an 18-year-old, raising a child with special needs felt like the world was against me,” said Fatima Abdullahi, an Abuja-based mother who faced a life of uncertainty and fear with little or no knowledge of what disability in a child was and how to tackle the condition.
Though she recounted a seamless pregnancy and birth experience, Fatima said she noticed some unusual changes in her toddler but hoped it was nothing to be bothered about.
Divorced before her son turned three, Fatima said her ex-husband insisted that the son stayed with his mother, “my mother-in-law”, even against her wish.
She added that after a while, her mother-in-law called her to come pick the boy because his condition was deteriorating. According to Fatima, her mother-in-law had said the boy’s stepmother was calling him an animal, treating him differently from the rest of the children in the house.
“After I picked my son, a friend advised me to take him to the hospital and have him checked, so I called my ex-husband and asked him to come along, but he said he had better things to do with his time. According to him, he had other kids to take care of, so he would not waste his resources on one child.”
Fatima is one among Nigerian women who are silent heroes in their journey of motherhood, defying societal stigma and stereotypes of having children with special needs. Fuelled by love and a determination to bring out the best in these ‘special’ children, they stop at nothing to get the best for them.
According to the World Health Organisation (WHO) children with special needs are those who have long-term physical, mental, intellectual or sensory impairments.
These impairments, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.
Fatima’s son diagnosed
Fatima said on getting to the hospital, the doctors confirmed her son had low intelligence quotient better known as Low IQ (a number representing a person’s reasoning ability).
According to Juliet Gyang, a special needs consultant in Abuja, Low IQ refers to below-average intellectual functioning, typically indicated by an IQ score below 70, which may affect a person’s ability to reason, solve-problems, and adapt to everyday tasks. “It is a general measure of cognitive ability,” she said.
Gyang, while speaking about the different types of disorders children can be born with, said “they include autism, cerebral palsy, down syndrome, dyslexia, Low IQ etc, and some of these conditions are comorbid (medical conditions that are simultaneously present in a patient). This means some of these kids are prone to other illnesses. For instance, most of the children with cerebral palsy are born with a hole in the heart; an operation has to be carried out before the initial intervention process begins.”
Fatima narrated further that the doctors advised her to enrol the boy in a special school where he would get attention from experts. “I did not have the money so I couldn’t take him to a special school, he kept managing ‘normal’ schools till they couldn’t handle him anymore,” she said.
She added that as he grew up, his condition improved because “even while he approached 10 years of age, he would excrete on himself, though I kept teaching him how to tell someone or remove his trousers. We battled with him like we would a year-old child, but now that he is grown, he tries to keep clean and not to mess up himself.”
The believe that mothers are the only ones who struggle raising children, especially those with special needs, stands challenged as Mr. Haruna Hassan is a man who had his fair share of struggles raising a special child after losing his wife.
According to him, Isiaka – his special son, is the first son of four surviving children.
Recounting the sad incident that caused Isiaka’s disability, Haruna said, “at birth, the doctors advised my late wife, Zainab, to go in for Caesarean section because they noticed the baby was too big but she refused surgery, and since I was on my way back from Lafia (Nasarawa State capital), they could not reach me on phone for my consent. At some point, the doctors had to drag the baby out in order to save my wife. In the process, the baby’s head vein got injured,” he said.
Kept in an incubator for a while, Haruna said that after the doctors monitored his son, they broke the news that “his brain was not developing as it should.”
With the loss of his wife four years ago, Haruna said the financial, physical and emotional challenge of taking care of their first son is not easy, but he’s glad over the notable progress in the child.
Rafatu Salami, another mother based in Abuja, shared her challenging journey, especially dealing with stigmatisation from the public with her 20-year-old son, Ahmed.
Ahmed, according to his mother, is living with autism spectrum.
She said many people verbally abused her son and sometimes tell her that her son’s problem was spiritual.
“Some people say I am cursed; it’s either I have done something bad to someone and it boomeranged or someone is trying to punish me for my bad behaviour,” she said.
As she further narrated, she sighed in disgust as she recalled a lady who once told her she had no sympathy for her because she had the opportunity of “ending the life of the boy as an infant the moment she figured he was not a normal child.”
Jamila Edako spoke about the lack of proper understanding of a special needs child, as a first-time mum. “When I first spotted differences in my son, I spoke to my husband and my mum but they didn’t understand me and they felt I was crazy. But my dad was the only person who understood me; he held my hands and told me everything will be fine.”
Talking about sensory processing disorder, Jamila Edako said she educates her son on how to draw strength from his weaknesses.
“My son doesn’t like noisy areas but because I don’t like treating him overly different, I always encourage some outdoor activities so that he can blend with people. I take him out to a noisy place and after a couple of minutes, I take him away so he doesn’t get too sensory exposed. This is to let him understand that he is a part of this world; he may be different but still he has to live with everyone else.”
According to the World Health Organisation, one billion people, which is 15 per cent of the world’s population, live with a physical, sensory, intellectual or mental health impairment significant enough to affect their daily lives.
Also, a report on Global Disability: an emerging issue published by Lancet Global Health journal in 2018, noted an increase in the number of children with developmental disabilities in Nigeria, from 1.5 million in 1990 to 2.5 million in 2016.
Dealing with stigma
A study on stigma among parents of children, especially with autism spectrum disorder in Nigeria, published in 2021 by BMC Psychology noted that 53 per cent of parents reported negative experiences related to parenting a child with Autism Spectrum Disorder (ASD) while 83.5 per cent internalised this stigma. This according to the study leads to parents keeping their children away from public spaces to avoid judgment and discrimination.
Speaking about the emotional impact, Fatima who spoke on some of her challenges with the stigma, how it affected her and how she tried to overcome, recalled her son being called “an animal by his stepmother.”
Though parents like Fatima, Jamila, Rafatu and Haruna stood their grounds to fight for a stigma-free environment for their kids to thrive, the Discrimination Against Persons with Disabilities (Prohibition) Act 2018 is the legal framework signed into law in 2019 to enforce a better society for special children.
Psychological, emotional and financial strain
A study by BMC Women’s Health in 2023 on the “health of mothers caring for a child with disability” recognised mothers as the primary caregivers for a child with disability. This makes them susceptible to having a diagnosis of musculoskeletal disorder MSDs. These are conditions that affect the muscles, bones, joints, ligaments and tendons. They are prone to depression, anxiety, sleeping disorder or migraines than mothers of children without a disability.
The study also noted that raising a child with disability requires a significant parental investment that is greater than that required by typically developing children.
Financially, the costs associated with caring for a child with disability increases the risk of economic hardship for families and the demands of care can be time-consuming and stressful, adversely affecting the employment and health of the parents, particularly mothers.
Rafatu Salami said her son, Ahmed, is specific on the type of water he drinks, his beddings “have to be cotton, else he won’t sleep.”
Meanwhile, Haruna said there is a reason they are called special children because they cannot be treated as normal no matter how a parent tried. He added that “from the amount we spent during his delivery, medical checkups and medication to his education (he’s in a special school here in Lafia which costs more than what I pay for his sisters) also his food preference, everything about him is special, I won’t say expensive.”
According to consultant Gyang, taking care of a child with special needs costs a lot, from the initial assessment to the intervention process.
“Parents of a child with special needs from the initial assessment visit the hospital to consult either paediatrician, child psychologist or neurologist. The consultants may ask them to do a brain scan or a Magnetic Resonance Imaging MRI (a procedure that uses magnetism, radio waves, and a computer to create pictures of areas inside the body), or do a CT scan, after which they are sent to a clinical psychologist to perform what is called a functional assessment. This assessment breaks down the areas a child may need intervention, for instance if the child is on autism spectrum, the child may need speech, occupational, sensory integration therapy and behavioural modification therapy,” he said.
Because of the demands from caregivers, mothers like Fatima, Jamila, among others, recall how they had to become stay-at-home mums just so they can give quality time and attention to their special kids.
Caregivers need therapy
– Specialist
Special needs consultant Juliet Gyang said parents of such children don’t see the need for therapy, when they truly need it.
She added that “A whole lot of conflict goes on in some homes with special needs children; we have had clients who point accusing fingers at each other’s families of being responsible for the condition. We have had mothers come to us crying, feeling helpless.”
She added that there are cases of broken marriages caused by some of the rising conflicts in families and this, according to her, is due to the situations they found themselves in.
Jamila noted that at the early stages, she blamed herself for the condition, adding that some mothers also find themselves doing same.
“I questioned some medications I took, what I drank while pregnant,” she said.
But Jamila said when she started therapy, she understood her child’s problem better and stopped looking for what or who to blame but for ways to help him.
Finding support groups
The consultant advised that mothers of special needs children should look for support groups to belong to, or make friends with parents going through similar struggles, to share experiences with each other.
Talking about support, Rafatu Salami said the greatest support she has had is from friends not family. She said her son’s father is not in his life and some of her close family members feel she is doing too much for the boy.
Rafatu, who is active on social media said since her son’s story was shared on Facebook, the outpour of love and financial support has been overwhelming.
Jamila Edako spoke about social media groups that have been impactful, but then majored her concern on those who can’t access the internet.
“For support, there are a couple of groups on Facebook and Instagram. I have a WhatsApp group for fellow special needs parents and experts who can give professional advice. We have virtual meetings not just physical meetings, with the aim of keeping special needs mums talking, hanging out and sharing ideas,” she said.
Fatima on the other hand said she doesn’t belong to any large social groups or gotten support from them but that she has some close friends who helped her with advice and suggestions and also connected her with one or two women with special needs children.