It was a momentous day for Bunmi in 2011 when she gave birth to her son, Eniibukun.
A few days later, like a sudden wave, the pediatrician called Bunmi to deliver the news that would profoundly change her life.
Her newborn son, who was still less than eight days old, was diagnosed with Cerebral Palsy.
“My child cried only 30 minutes after his birth – a situation called birth asphyxia. The pediatrician explained that due to this, my child would likely experience delayed developmental milestones. He might reach them, or he might not, but there are certain things we could do to support him through this phase.
While there’s no cure, his condition can be managed,” Ms. Bunmi recounted.
Bunmi, a student at Olabisi Onabanjo University, felt isolated and overwhelmed, as she struggled to find others in similar situations. This sense of isolation and despair is a common experience among parents of children with disabilities.
Mrs. Adeniyi, another parent, shared similar sentiments. The diagnosis of her son with cerebral palsy left her feeling like her world was crumbling. Despite numerous hospital visits, she saw little improvement in her child’s condition.
“I carried a heavy burden and would often find myself crying. Despite regularly visiting hospitals like LASUTH and the National Orthopaedic Hospital, Igbobi, I saw no transformative change in my child the way I was expecting even after a year or two of treatment,” she said.
These are the common struggles of parents raising children with disabilities in Nigeria.
A lack of acceptance, emotional and financial strain, and social stigma can create a suffocating environment. Studies reveal the emotional toll on parents – stress, depression, and a decline in quality of life.
The 2022 Nigeria Multidimensional Poverty Index shows that disability may increase the likelihood of experiencing poverty in households with persons with disability than in households without persons with disability.
The Index further stated that difficulties related to employment and unexpected adverse events (shocks) play a larger role in causing multidimensional poverty among people living in households with persons with disabilities (PLWDs) compared to households without PLWDs.
A study by Daniel J. A., Okefienam E. C., et al published in the Open Journal of Social Sciences in 2021 revealed that parenting children with disability can be highly stressful due to numerous challenges. Parents face emotional and financial stress, lack of support, discrimination, loss of social life, and other difficulties. These challenges can lead to psychological problems, depression, physical exhaustion, and a reduced quality of life.
Mrs. Yakubu Olawumi Esther, who has two children with disabilities, embodies these struggles. Unable to hold a full-time job, she relies on community volunteering to survive, facing substantial monthly expenses for her children’s medications.
Mrs Yakubu said “Having two children with disabilities is very challenging. For instance, medications for both kids cost over N50,000 per month. These expenses, in addition to feeding and general upkeep, are substantial, and I am currently not working.”
A Nigerian Foundation Offers Succour to Parents with Children with Disability
Nigeria is home to an estimated 29 million people with disabilities, many of whom face discrimination and societal exclusion.
The Super Parents Foundation, founded by Barrister Mofoluwasho Liasu, aims to change this narrative. Inspired by her passion for justice and equality, Barr. Liasu started the foundation after encountering a distressing Facebook post about a mother of a child with a disability being rejected by their family.
Since its inception, the foundation has provided crucial support to families, including the donation of cerebral palsy wheelchairs, walkers, braces, and crutches. In 2023 alone, they organized free medical treatments benefiting over 270 individuals.
For parents like Mrs. Yakubu, the foundation has been a lifeline. Connecting with other parents through the foundation’s Facebook group, she found a sense of community and support.
The foundation also provides practical assistance, such as sanitary pads, food, and transportation money, along with free therapy sessions for special needs children, supported by donors and philanthropists.
Bunmi, who joined the foundation after her son’s diagnosis, found a transformative support network. Participating in the foundation’s inclusive events shifted her perspective and helped her embrace her role as a parent of a child with a disability. Similarly, Mrs. Obigbemi noted that the foundation’s support has alleviated the emotional burden and helped her accept her child’s unique needs.
Relief Amidst Challenges
Before joining the foundation platform on Facebook, Mrs. Yakubu Olawumi Esther, who has two children with disabilities, believed her situation was peculiar. However, upon joining, she connected with other parents facing similar challenges and experienced a sense of community.
Mrs Yakubu said “Before I learned about Super Parents Foundation, I had been to many other foundations but Super Parent is good. I have two special needs children, Muiz and Aliya Yakubu. Taking care of them is challenging, but joining the foundation’s Facebook group and seeing other parents in similar situations made me realize that I am not alone.”
Furthermore, she stated “Honestly, God has been faithful to me through the Super Parents Foundation. For example, in May this year, the foundation provided my daughter Aliyah with sanitary pads, food, and money for transportation. Additionally, they offer free therapy sessions for special needs children including my children, supported by donors and philanthropists, covering speech, occupational, and physiotherapy sessions.”
Bunmi, whose child was diagnosed with cerebral palsy in 2011, mentioned that joining the foundation has shifted her perspective on parenting a child with a disability. It has also connected her with a community of mothers, where they share experiences and knowledge.
“I can’t recall the exact year I discovered the Super Parents Foundation, but I remember one of my neighbors in my area introduced me to the foundation. At that time, they were organizing their inaugural inclusive Christmas party for children in December.
I distinctly remember feeling emotionally fragile and unmotivated that day, tears streaming down my face but seeing other children with varying disabilities made me realize how comparatively minimal my challenges were. That changed my perspective about having a child with a disability.
My child, Eniibukun, is now 13 years old, which means we’ve been on this journey for 13 years,” Ms Bunmi stated.
Mrs. Obigbemi, whose child was also diagnosed with Cerebral Palsy, expressed that joining the foundation has changed her mindset. Their support has provided comfort and helped her to accept her reality.
“Coming here has taken the emotional burden that accompanies having a special needs child. Before I had the mindset that I was all alone, so being part of the Super Parents community made me realize that I am not alone, having seen parents who are also going through the same challenges.
This has helped me appreciate my child’s personality as a special being. The intervention of the Super Parents Foundation has brought succor in terms of support like free therapy sessions for the special kids and materials like diapers for our children” Mrs Obigbemi stated
Super Parents Foundation’s Intervention
One of the key interventions that Super Parents Foundation provides to parents of children with disabilities is therapy sessions, due to its proven effectiveness in helping children with disabilities improve over time.
There is a therapy session every Friday at the foundation. Sometimes these sessions are free if donors offer to bear the bills and sometimes they do them at a subsidized rate.
“I’ve witnessed the incredible benefits of therapy. Of course, therapy is one of the solutions for people with disabilities, along with quality education. These interventions help them become more independent. However, accessing these resources is often challenging and depends on the severity of the disability.
For example, parents frequently complain about the difficulty of obtaining wheelchairs and affording therapy sessions. Although some therapy sessions are occasionally subsidized, many average parents still struggle to afford these services, depending on the severity of their child’s condition,” Barr. Mofuluwasho Liasu stated.
Another initiative that the foundation deploys to support parents with children with disability is skill empowerment for parents
“Our first focus is parents because before you can help a child with special needs, you need to help the caregivers or the parents first. We ensure we empower and support the parents so they can be able to help themselves to care for their child optimally.”
Other services by the foundation are counseling for parents and advocacy against discrimination against persons with disability both within and outside the home.
Intervention not Without Limitations
In its early days, the foundation recognized that resistance from parents of children with disabilities was a significant barrier to the effectiveness of their advocacy and overall interventions.
“Initially, many parents resisted. Accepting their new reality as parents of children with disabilities was difficult, leading to numerous excuses and rebellious attitudes.
The cultural aspect also played a role. In Africa, many occurrences that don’t align with our concept of “normal” are often mystified. These beliefs and mindsets contributed to the resistance we encountered from parents of special needs children,” Barr. Mofoluwasho Liasu stated.
Another factor that is undermining the intervention that the foundation is providing is insufficient funding.
“This type of service to humanity requires continuous funding. A significant portion of our support comes from individuals in my network and our social media followers, which sometimes limits us. Although we have applied for grants, we haven’t received any yet.
However, some Nigerian organizations do provide us with financial and material assistance, although it is not sufficient to sustain our interventions.”
Experts react
Dataphyte spoke with the founder of Hope for the Future Disability Initiative and Former Chairman of the Joint National Association of Persons with Disabilities (JONAPWD), Osun State Chapter, Mr. Kehinde S. Onitiju, who disclosed that parents of children with disabilities in Nigeria face discrimination, including neglect by family and friends and societal stigmatization.
While sharing his personal experience of discrimination and the challenges parents face in accepting their child’s disability, he emphasized the importance of inclusive caregiving and the need for societal change in attitudes towards persons with disabilities.
“At the age of one and a half, I became mobility-impaired due to poliomyelitis. The responsibility of caring for me then fell entirely on my mother. She took great care of me, even carrying me on her back when I was 12 years old,” Mr Onitiju said.
Despite facing discrimination, Mr. Onitiju said he refused to let it hinder his dedication to his studies, excelling despite the challenges. He said his achievements served as both consolation and a powerful lesson that individuals with disabilities are equally human and deserve to be treated with dignity and respect.
Furthermore, Mr Onitiju added, “I faced a similar situation as my mother when I had my first child with a disability, but we made sure it didn’t affect our relationship with him. He was diagnosed with a low Intelligence Quotient (IQ) as a result of prolonged labor during his birth.
He mentioned that one of the challenges parents face is accepting their child’s special needs. Upon learning about their child’s condition, some parents may begin to distance themselves and often hide their child from others.
“Caring for a child with a disability can be demanding, so both parents should agree on a caregiving plan. Those who can afford it might consider hiring a housemaid specifically to care for the child,” Mr Onitiju concluded.
Also, a Gender and Disability Rights Advocate and the founder of Purple Initiative for Inclusive Gender Development, Ms. Oluwatomisin Adeyefa acknowledged that parents of children with disabilities often encounter difficulties such as self-acceptance and discrimination from both family and society.
Ms. Adeyefa stated, “It’s not just the child with a disability that faces discrimination, stigmatization, or negative stereotypes, parents especially the woman face much of it.
These people are undeniably strong because, without them, the children would be lost. This suggests that at some point, they decided to accept their circumstances and move forward. Yet, many of them, deep down, still hold hope for a miracle.”
Ms. Adeyefa urged society and the government to provide parents of children with disabilities with a supportive, thriving, and safe environment, allowing them to navigate their acceptance phase without facing unnecessary stigmatization.
“We expect that when the government is making laws prohibiting discrimination against persons with disabilities, this law also extends to parents, caregivers, and families of persons with disabilities, protecting them from discrimination.”
She advised that parents with children with disabilities can also create support groups among themselves to navigate their acceptance phase. A group where they can come together, share their experiences, and collectively help one another.
Overall, caregiving is undoubtedly a complex, long-term process that necessitates constant motivation for caregivers and parents of children with disabilities, enabling them to continually adapt to the demands of providing care and support for the recipients.
This story was produced with the support of the Solutions Journalism Network and the Nigeria Health Watch in partnership with Dataphyte.