Parents are often told that just loving their kids is enough, but when you’re raising a child with a disability, love is only one part of the equation. There’s also the fight for the right diagnosis, accessible schools, expensive therapy, and a world that wasn’t built with your child in mind.
For many parents, the hardest part isn’t their child’s disability. It’s the guilt, grief, exhaustion, and constant worry that they’re not doing enough, even when they’re giving everything they have.
In this article, we spoke to eight mothers about what it’s really like to raise children with disabilities, and the joys, heartbreaks, and difficult truths that come with the journey.
1. “I Believe His Deafness Alienated Him From the World” — Doyin*, 45
My son was born deaf, and although he is almost 20 and doing okay for himself, I feel like I failed him as a parent. My husband died a month before the birth of our son, so I struggled a lot. I wasn’t that close to my siblings; my in-laws thought I was the one who killed their breadwinner, and because of this, I didn’t have enough of a support system. Maybe if I had more people in my life, I wouldn’t constantly feel like I failed as a parent.
I was able to enrol him in a school for deaf people, but I believe his deafness alienated him from the world. I didn’t know much sign language, so our conversations were always limited, and because of that, we don’t have a great mother-son dynamic. He barely had friends outside the ones he made at school because kids who could speak and hear always got frustrated with him for not understanding them.
I couldn’t take him to a lot of events because he didn’t know how to read lips, and he hated that so much. He was a very lonely child, and although the world is better now and people are kinder to him, I still think I could have done more to make his life easier
2. “She Got in Trouble for Being Unable to Perform Basic Reading and Writing Tasks” — Amirah*, 39
My twelve-year-old daughter has dyslexia, and I didn’t even know what it meant until her aunt, a psychologist, visited us for the first time, pulled me aside after a week of spending time with us, and asked me if I knew what dyslexia meant. That night, I conducted thorough research on it, and it started to put a lot of things into perspective for me.
My daughter has always struggled with school. In primary school, she got into trouble with her teachers because she was unable to perform basic writing and reading tasks that most of her classmates could. We even had to change her school at some point because a teacher got so frustrated with her that he beat her till her body got marks. There was a time I sacked one of her home teachers who got too comfortable with calling her an olodo (dullard) whenever I wasn’t around to supervise. My husband and I thought she was just a child who didn’t like school and that she would eventually grow out of it. Thank God for her aunt.
After her aunt guessed dyslexia, we booked an appointment with a neurologist who assessed her and confirmed what we’d already known. All we had to do was get her all the aid she would need. A week after her diagnosis, we found a private tutor who specialises in dyslexic children, and honestly, life has gotten better since then. She still struggles, obviously, but she seems happier, and honestly, I’m just glad.
3. “I Would Love It if She Were Like Other Toddlers Her Age” — Etim*, 28
I have an autistic toddler, and I can’t lie, I’ve not been having a great time with this parent thing. I’m glad my husband and I have the financial resources to help her, but it hasn’t been easy. I know my daughter didn’t ask for this; it’s not her fault, but honestly, it has been so difficult.
She is mostly nonverbal, so communication with her always ends in screaming, scratching, and tantrums. Unlike most kids, she shows little interest in anything or even anyone. She has a special interest in dolls, and that is the only thing she focuses on. It makes my heart ache because while her neurologist has assured me that she is not going to remain non-verbal forever, I would love it if she were like other toddlers her age.
The worst part is that a lot of my friends and family do not understand autism or what it means, and they’re not making efforts to educate themselves because they believe it’s ‘oyinbo illness’, and it’s quite frustrating watching them pray over her head as if prayers would fix her. I’ve had to distance myself from most of them because they’re not even making the situation better.
4. “There’s a Lack of Consideration for People With Disabilities in This Country” — Ngozi*, 38
About three years ago, my son got into a life-threatening accident that permanently put him in a wheelchair, and ever since then, my eyes have started seeing the lack of consideration for people with disabilities in this country. Taking care of someone in a wheelchair is already hard enough as it is, but it is maddening when the places you visit do not have provisions to cater to people with disabilities.
This is my biggest frustration about this. Few places in our state actually have wheelchair ramps or elevators, so there have been many times when my husband had to carry our son up the stairs, and on every occasion, I end up crying. I don’t mind moulding my life for my son and sacrificing certain things to ensure his comfort. It just pisses me off because when we step outside of our home, he faces the discomfort I do my best to shield him from. This is why my husband and I are planning to relocate to a new country where our son can feel more comfortable and at peace with himself.
5. “Her Defect Doesn’t Make Me Love Her Any Less” — Aisha*, 48
My third child was born with a congenital eye defect, and she barely has any working vision. This is something that continues to break my heart because I just feel like it’s unfair that her siblings didn’t have any defects, but she does. Still, I do not love her any less. She is my daughter, and I’m very happy that I take care of her and make the world livable for her. It’s frustrating to exist in a country where people with disabilities are seen as cursed. I’ve never subscribed to that belief, so I let their comments roll off my back easily.
Although she experiences life differently from people with sight, my daughter leads a normal life. She goes to school, interacts with people who see her beyond her blindness, uses her devices comfortably, and still tries to see the beauty of life. There are times when she gets frustrated by her inability to see what other people can easily see, and I don’t blame her for that, but still, she is happy, and that makes me happy too.
6. “The Money That Goes Into Caring for a Child With Down Syndrome is Not Small” — Tumi*, 3
Our son has Down Syndrome, and it has been a rollercoaster raising him. Having him made my husband and me realise that we cannot just be 50% in. We have to be there for our child in every way he requires us to. And that can be financially and mentally exhausting. I don’t mind because I was already aware of his condition before his birth, and I knew the sacrifices I would need to make, but I would advise anyone who can’t make that dedication to terminate if they can.
The money that goes into caring for a child with Down Syndrome is not small. There are countless physical therapy, speech therapy, and other appointments with the doctor that just take and take from you. You even have to care for this child while keeping in mind that they could develop a heart defect anytime, and you have to be mentally prepared for the way people look at your child, like they’re some alien wandering the streets of Lagos. If you don’t have the right armour, you are going to fumble, and it would affect your relationship with your child.
Having my child has made me realise that people really need to be gentle and careful with the way they care for their child. There have been many times I’ve looked at him and asked myself whether I really made a good decision in bringing him into this world despite the risks. There have also been times when I cursed myself for doing this to myself, but I never let that show when I’m taking care of him. Down Syndrome babies are humans who also deserve to be loved by their parents, and I hope that I live long enough to keep loving him.
7. “He is Losing So Many Opportunities in Life Because of His Deafness” — Atinuke*, 59
I have twin boys, and one of them, Taiwo, is deaf. Taiwo is almost 30, and he has cut his dad and me from his life. I don’t blame him because of the way we mishandled his deafness. We knew he was deaf, and instead of helping him out like we were supposed to, we just dropped him off at his grandpa’s and expected him to figure life out. We didn’t want to claim a child who was deaf. It felt like a stain on our reputation, and we didn’t actually have the money to care for him.
While he was at his grandpa’s, Taiwo apparently found a way to communicate. He couldn’t use the actual sign language because he didn’t go to school, but I learned that his cousins and the friends he made at his grandpa’s found a way to communicate with him, despite his deafness and muteness. On the weekends, when we visited him, he would try to communicate with us, and while I didn’t care too much about him then, I feel so much guilt now because I didn’t even try to bridge that communication gap or make life easier for him.
From what his twin tells me, Taiwo is losing so many opportunities in life because of his deafness. It makes me angry at myself because I believe that I could have been a better mother who did not turn her back on her child because of who he was.
8. “It Was a Good Thing I Decided Not to Give Birth After Her” — Mayo*, 40
My daughter has low-functioning autism, and even though she is currently 18, she has the mind of a 3-year-old. It has not been very easy caring for her, and it was a good thing that I decided not to give birth after her. Because she needs all the attention she can get, I have devoted my best years to caring for her. My husband didn’t have to make such sacrifices because right from her childhood, he has refused to acknowledge that she is different from other kids.
My daughter is mostly nonverbal, and it can get frustrating when I’m trying to communicate with her and get no response. But the moment I leave the house to run errands, she throws the biggest tantrum. Sometimes, she would even rage-scream and act physically violent towards me. I work from home because of her, but she barely even lets me finish my deliverables on time, and while my boss is very much aware of my situation, it is still very frustrating. I know that I could just spare myself the stress and get her into a high-end autism program that could provide her with the right support, but with the way she behaves sometimes, I’m scared of her being away from home.
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