By Juliana Taiwo, Abuja
Autism spectrum disorder, like other disabilities that affect children, comes with mixed emotions, ups and downs, high and low moments, as family members strive to bond together, providing care and support for children with special needs.
•Haniyat Badamasuiy-Salisu and her son
Listening to the experiences of parents, caregivers and others providing care and support to the children with autism spectrum disorder at the “Campaign Against the Stigmatization of Parents of Special Needs Children” walk, there were variegated insights, somber moments, struggle, pain and triumph at personal and group levels. Parents mostly, mothers, have had to endure stigma, strive to provide care for children with autism spectrum disorder, earning the badge of honour ‘warrior mother,’ due to the unwavering commitment, love and care for their special children.
Making of ‘Warrior Mothers’
As part of autism awareness, Daily Sun spoke with some parents and caregivers in Abuja, Nigeria’s capital, collating real-life experiences with stigmatisation and exclusion; how autism impacted on their families and how they managed to overcome some social construct on disability used against them. Responses by parents and caregivers were a revelation on social exclusion as well as cultural disinformation that drives stigmatisation.
•Ahmed Salami
Rafat Salami, journalist, rights activist
Salami, a seasoned journalist, passionate rights advocate and devoted parent to a child with autism spectrum disorder, has dedicated close to two decades to caring for her son, Ahmed, who is now 19 years old. Against all odds, Ahmed has overcome many of his childhood challenges, autism, cerebral palsy, ADHD and intellectual disability. Thanks to intensive therapy from being nonverbal, he gained speech at six years, now he is fluent, a YouTuber, a mobile and a well sought after influencer by media organisations both within and outside the country. Thanks to a mother that refused to give up, he has continued to make significant progress in covering lost ground.
•Rafat Salami
Salami has chosen to transform her wealth of experience into a powerful advocacy platform aimed at assisting fellow parents navigating the complexities of the autism. Through sharing her personal journey as a mother of a child with autism across various media outlets and engaging in seminars and workshops for Persons with Disabilities (PWDs), she has garnered significant support and positive feedback from parents, activists and stakeholders committed to advancing the rights of PWDs.
“Ahmed, my child, has autism spectrum disorder; he has done so well for himself. I have undertaken advocacy on behalf of Ahmed and other children with special needs to tackle stigmatisation and exclusion,” she told Daily Sun in an interview.
A tireless champion for children with special needs
Salami can rightfully be described as a “warrior mother,” a fitting title that captures her unwavering dedication and tireless efforts in supporting children with special needs, including her own son, Ahmed, who is on the autism spectrum.
Despite the personal challenges of raising a child with autism, Salami has consistently showed up and stood in steadfast support of children with special needs. Her commitment to this cause remains unshakable, as she continues to advocate, educate and empower others navigating the complexities of caring for a child with unique needs.
“At 19, Ahmed has had his share of stigma and discrimination. I am his mother; I know what I am talking about. We have suffered a lot of stigma. We have fought different battles and overcome so many times. It is not over until it is over; we are resolved about defeating stigma and discrimination,” she asserted.
“First, it is not my fault or my son’s fault either. Secondly, I did not ask for it (autism) and no parent with a child with special needs asked for it. God gave my son, Ahmed, to me, and I love him the way he is. I would not exchange him for anything on earth. My admonition to parents is, please, love your child, sisters and brothers, regardless how he or she is.”
On how she has maintained her mental health, she said: “Block your ears because you will hear so many things. You will be told it is your fault, you are a witch, your mother is a witch or your grandfather was a wizard, your bad attitude caused it, you walked at night that is why you have a child with a disability.”
She noted that blocking your ears to hate and innuendoes will help you to keep your sanity as a parent of a child with special needs.
“Some will tell you to throw the child away, kill the child, that you are wasting your time and money. Looking at my son, I know I did not waste my time, money and resources. I want to encourage you, believe in God, have faith and work and God will show us mercy,” she added.
Salami advised Nigerians to cultivate empathy, instead of being judgmental to children with challenges and their parents: “All we need from you is support and kindness. The world will be better if we show a little kindness. Do not be too quick to judge, always ask for support.”
She acknowledged that anytime she goes out in public with her son, Ahmed, she affected a few individuals by her active engagement with people she encounters there.
“For instance, I request for quick service anywhere I go. If I go into a supermarket, I tell people who are on the queue with me, I am with someone pointing to Ahmed, who cannot stay on the queue, who cannot handle crowds and I get express service.
“On one occasion, I took him for his biometrics at the passport office, for his international passport. I explained to them that he cannot stay on the queue and the immigration officials obliged to my request and quickly attended to us. These are positive support from Nigerians who now understand that children with autism easily become restless, fear crowded and similar symptoms.”
Fatima Zarahu Ahmed is a social media influencer and mother of two special needs children. Also known as Zara Unscripted on Instagram, Fatima bravely shares her journey as a parent to children with special needs. She proudly identifies as a warrior mother to her two children, one with cerebral palsy and the other with Down syndrome, embodying the strength and resilience that define her as a true ‘warrior mother.’
In the face of societal stigma and misconceptions, her journey is a testament to the power of resilience and unconditional love. Sharing her experiences, she recounts the amazing journey of persevering through the challenges posed by others’ insinuations about her children with special needs.
She has chosen to focus on the immense joy and fulfillment she finds in her role as a mother, cherishing the unique gifts and perspectives her children bring to her life.
“Over the years, I have developed a thick skin. If you tell me that it is my fault, I look at you and tell you, Allah chose me to bless my home with these children, they came directly from paradise. I am not ashamed of my children, and I do not care what people say. Because of my children I have been featured as a guest on BBC Africa, BBC Hausa and many other places.
“I am from Kano, and we all know that people of Arewa (Northern Nigeria) do not talk about this, you are expected to hide your children but not me, I will not hide my children. I will show them to your faces until you accept them. This made my social media handle, @zara_unscripted, a popular name. If I wasn’t associated with them nobody would have known me today.”
As a social entrepreneur, advocate and social media influencer with over 12,000 followers on Instagram and still counting, Zara Unscripted has succeeded to influence many by her message of inclusion, empathy and support for children with special needs. Additionally, she uses her platform to engage other public-spirited individuals to be effective within their space by lending support to children with special needs.
She said: “My story is a beautiful one because for my son, his case is not congenital. While in active labour, I was sedated and that actually caused depression in his respiration which caused Depxiar arcoxia, which led to brain injury, assault and subsequently to brain damage. I have been bashed but I do not care.
“My daughter has Down syndrome and that is genetic, that I know. I gave birth to her at 37, I am in my 40s today. My husband is in his 50s, so what do you expect? I am happy but, please, do not let anyone tell you otherwise. We have gone places. We will keep trying and keep loving. Love your children the way they are, they are a blessing.”
Warrior mum, Doreen
In a candid interview, Doreen shared her poignant story as a mother of five from Kaduna State. Her harrowing journey into the world of autism began when her third child was diagnosed with autism spectrum disorder. Shockingly, she revealed how a close friend insensitively suggested that her child’s condition was a result of infidelity during her pregnancy. This baseless accusation not only added to her distress but also highlighted the pervasive stigma and misinformation surrounding autism in society.
Doreen’s experience sheds light on the challenges faced by families dealing with autism and the urgent need for awareness and understanding in our communities.
Expectedly, the snide remark made her go into depression, and she was heartbroken. The friend’s insinuation of ‘infidelity’ as the cause of the child being autistic unsettled her emotionally, and she did not know how to respond.
“I was heartbroken due to the remark by my friend, which was inconceivable, reckless and unfair. I became depressed for weeks, but I had to pick myself up and move on,” she said.
However, her experience is not an isolated incident as scores of parents and caregivers endure similar remarks at one time or another. Other drivers of stigmatisation include social construct, cultural and religious biases influence people’s attitudes to child disability as recompense or challenges faced by parents of children with special needs in Nigeria, fuelling discrimination and stigmatisation.
Working with children with special needs is a mixed bag -Obinna, caregiver and expert
Obinna, a caregiver at SAIMAM Special Needs Care Centre in Abuja, highlighted the dual challenges faced by parents of special-needs children: caring for a child with autism and dealing with stigmatization and discrimination. He emphasized the importance of embracing equality and inclusivity for all individuals, including those with disabilities.
“Parents of children with special needs face unique challenges and obstacles in their daily lives, often stemming from societal biases, a lack of awareness and a dearth of support systems. We have organized campaigns to address drivers of stigma and exclusion, while promoting a more inclusive and compassionate society,” he said.
Obinna noted that working with special needs kids is a mixed bag of adventure and hard work: “I do not regret working with children with special needs. The truth remains that working with children with special needs is a selfless service in the sense that you try to put yourself in the shoes of the parents. The children with special needs include those with autism, cerebral palsy and related challenges. Working with special needs children requires experience and can be an incredibly demanding and energy-intensive endeavour.
“Your son doesn’t befit your status and profession, throw him away,” Adaeze Nwuba’s husband told.
Adaeze Nwuba and husband were advised to throw away their son. Her six-year-old has Down syndrome, and she has come to realize that God only gives challenges that one can bear. Initially, she was in denial, cried, asked questions and sought support.
In Nigeria, support groups like “Campaign Against the Stigmatization of Parents of Special Needs Children” are scarce, but she eventually accepted her son’s condition.
Adaeze’s husband, a medical doctor, was also searching for answers. They were laughed at, bullied and mocked for having a child with special needs. People advised them to abandon their son, but this only strengthened their love for him. Adaeze’s husband showed off their son more and the two are very close.
Adaeze encourages others to love, encourage and empathize with parents of children with special needs. She advised against judging them, as one never knows what they are going through. Instead, ask questions and try to understand their situation.
Adaeze shared a profound experience of acceptance and empathy, realizing the challenges faced by children with Down syndrome. She recounted a time of crisis when her son was hospitalized, her husband had an accident, and she had to shuttle between two hospitals.
That ordeal taught her to stop judging and start spreading awareness about special needs. She now embraces her son, feeling chosen by God to care for him and share their story as a gospel of empathy and support for families with special needs children.
She said: “So, as much as possible, I will spread the gospel because it’s now a gospel. As long as you know me, you must know I have a child with Down syndrome and you must know about children with special needs.
“For those who don’t have special needs children, when you see one or a parent with one, ask them the help they need. Be empathetic and not sympathetic. If the child is misbehaving, help to calm him down, if you can, if he takes your stuff, don’t beat or shout at him, find out why he needs those things. Help, support because they are going through a lot and a lot is going through them.”
With a supportive husband, you have won 80% of the battle – Nasira Ahamed
Nasira Ahamed is a mother of five, including a 15-year-old with cerebral palsy. She shared her story:
“Abdullah was diagnosed with cerebral palsy at two after a difficult delivery with cord around the neck, fetal aneurysm and neonatal jaundice. He had delayed milestones like poor neck control and inability to sit without support by six months.
“After a two-week hospital stay, Abdullah began therapy. At two-years-old, the cerebral palsy diagnosis was confirmed. To support Abdullah, I decided not to seek employment to focus on Abdullah’s care. I extensively researched cerebral palsy as a nurse, fully accepted Abdullah as he is and, as a family, we travelled to India for further medical evaluation and a definitive cerebral palsy diagnosis.
“In 2015, my husband and I took our son to China for a stem cell transplant, spending a month there. Having a supportive spouse is crucial when caring for a child with special needs. My son, now 15 but mentally 10 years old, has faced challenges like involuntary movements, walking difficulties, speech problems, fine motor skills issues and bladder control. He took his first steps at five but often falls and sustains injuries. Corrective surgeries have helped, and he is currently in year five at an inclusive school.
“It is important to educate others about children with special needs, as stigma starts from the family setting, community and society. We need to inform people about the prenatal, intranatal and postnatal causes of special needs conditions. While the exact causes are often unknown, there are predisposing factors.
“With proper medical preparation, some conditions like Down syndrome can be prevented. Intranatal complications such as interrupted oxygen supply to the brain, can lead to irreversible damage. Postnatal causes include injuries, neonatal jaundice and other factors that affect brain development.
“Children with special needs should be accepted and included in society. Inclusive schools are advised for mild cases of autism and cerebral palsy, as they help children learn social behaviours. However, the severity of the condition should be considered when choosing between inclusive and special centres.
“Families of children with special needs require support from the government, particularly in terms of school fees and therapy costs. It is also crucial for these families to support each other. Events like disability day can help raise awareness and bring the community together.
“We need government support to help with high costs of therapies and school fees for children with disabilities. Mutual support within the disability community is crucial. This forum should continue as a platform for advocacy and connection.
“Aim for a large turnout on International Day of Persons with Disabilities to raise awareness and demand support.”
A naive first-time mum lost her baby
Blessing, a first-time mother, lost her child in 2021 due to undiagnosed hydrocephalus, a rare condition that causes an abnormal buildup of fluid in the brain, leading to an enlarged head. As a young mother with limited support, she struggled to navigate her child’s illness, seeking treatment for fever and malaria, unaware of the underlying cause. Despite undergoing surgery to remove excess fluid, the child passed away due to the late diagnosis of hydrocephalus.
I was told my child was punishment for what I did – Mercy
She said: “I am a mother of a 15-year-old special needs child, my third child. My first two deliveries were without complications, but my third child was born with jaundice that was not detected until after we were discharged from the hospital.
“I faced stigmatisation from others who suggested the child’s condition was a punishment. However, the doctor educated us and helped us handle the stigma.
“My main concern was for my child to be able to walk, which happened at one year and seven months old. This was a major milestone for the family. Now 15 years old, my daughter is very caring, sensitive and helpful around the house. I prepared her well before reaching puberty and menstruation stage and when it happened, she handled it well.
“Overall, the challenges I faced made me dedicated to supporting and caring for my special needs child and I have sympathy for others in similar position.”
Grandma Precetta’s counsel to parents, caregivers, government
“This issue requires a nationwide movement. All people are special, but some are exceptionally so. Parents cannot handle this challenge alone – the government needs to get involved. No amount of personal wealth can fully support these needs.
“This group should organize a seminar to raise awareness with the government. Create a public awareness campaign, such as a jingle. Parents often experience significant psychological stress. Fathers should also participate in awareness-raising activities. The most important thing is to provide unconditional love to children with special needs. Speak to children normally and have age-appropriate conversations.”
Parents should prioritise self-care:
Nifemi, the owner of a special school center, emphasises the importance of self-care for parents of children with special needs. She highlights the need for self-care to effectively care for their children, stressing consistency, intentionality and positivity in caregiving.
Nifemi also encourages parents to persevere even when progress seems slow, emphasisng the power of love and consistency in helping children achieve what may seem impossible.
Convener “Campaign Against the Stigmatization of Parents of Special Needs Children” walk and Director, SAIMAM Special Needs Care Center, Haniyat Badamasuiy-Salisu
“I’m a mother of a child with special needs, Imran. As someone who runs a special needs center, I’ve seen firsthand the challenges and struggles that parents and children with disabilities face. It’s important to remember that you never know what someone is going through, so it’s crucial to approach everyone with kindness and compassion.
“Everybody needs support, especially parents of children with special needs. When these parents come to my center, they are often feeling lost, overwhelmed and unsure of where to turn. It’s our responsibility as a society to provide them with the resources and support they need to help their children thrive.
“While taking children with special needs to inclusive settings is a good idea in theory, the reality is often quite different. Many parents have spent a significant amount of money sending their children to mainstream schools, only to find that their child is not truly included or supported in that environment. This can be a heartbreaking and frustrating experience for both the child and the parents.
The Walk
“The purpose of this walk is not to elicit pity for children with special needs, but rather to raise awareness and encourage support and kindness. By coming together as a community and showing our support for these children and their families, we can make a real difference in their lives.
“It’s important to remember that children with special needs have so much to offer and that they deserve to be treated with respect, dignity and inclusion. In conclusion, I hope that this walk will inspire others to be more understanding, supportive and kind to children with special needs and their families. Together, we can create a more inclusive and supportive world for everyone.”