When my daughter Nimmy was just a little over a year old, her paediatrician recommended that we take her to a neurologist for an assessment.
She was assessed by a professor at the Lagos University Teaching Hospital. At the end of her assessment, she was graded as a stage 5 (stage 1 being least affected by cerebral palsy and stage 5 meaning most affected) child. My husband and I were told she would never be able to do a lot of things.
We were told she might never be able to walk, or talk or sit independently, among other things, but God brought people into our lives who encouraged us not to give up on our daughter.
I remember Nimmy’s first special needs therapist, Ms. Ijagbemi who persistently asked my husband and I to look for a school for her, and she provided trained caregivers to stay with Nimmy in school. Then there was Mrs. Okereke who accepted Nimmy into the very first school she attended, and Mrs. Ngwube, her current proprietress.
Within a space of five years, we have had numerous caregivers, lesson teachers, speech therapists, occupational therapists and physiotherapists who have in one way or the other made a positive impact on Nimmy’s life.
After close to five years of Nimmy attending school and learning to read, she exceeded our expectations. At age four, she could identify all the 26 letters of the alphabets and associate them with objects. She could count from 1 to 50 and also count backwards up to 10. She understood what addition and subtraction meant.
I remembered the last children’s party that held in her school. The teacher asked the children a question, ‘What are the things that help a plant to grow?’ She took the microphone to Nimmy and my baby shouted, ‘water’. The other parents at the event were pleasantly surprised. They clapped and cheered.
I shared Nimmy’s progress story on Facebook to encourage other mums with special needs children. I had some feedbackfrom some of those mums. Some of them were tired of taking care of their special needs children; others asked if I knew any boarding facility where they could keep theirs.
A few days after I posted that article on Facebook, I came across a complaint (posted on Facebook) by a woman who has a child with special needs. She took her daughter for therapy at a general hospital in Lagos. While sitting down, waiting for her turn to see the physiotherapist, she overheard a group of women talking about their experiences of taking care of children with disabilities. One of the women said she wished her son could die. Another said no one invited her to parties anymore and she didn’t socialize because people no longer wished to mingle with her. Another mother said she locked her child at home, away from prying eyes whenever she went out. A lot of people commented on that post and labelled the women as wicked and heartless. I laughed when I saw the comments.
Our society which includes the church and the mosque has labelled these children as demonic. Some say they come into the world as a result of their parents’ sin or through spiritual attack on the parents’ or the children. These children are usually stigmatised in the public and sometimes in their own homes.
Stigmatisation is real. It is as real as the air we breathe.
Couples who have special needs children face pressures from extended family members. Members of the husband and wife’s family may say they do not have such children in their lineage. This may lead to a breakdown of peace in the home and sometimes to separation or divorce. Oftentimes, the woman is left alone with the responsibility of caring for the child. In the society where I grew up, a good child belongs to the father and when a woman has a child that does not fall into that category, that child becomes her cross to bear.
In some cases, the mother of the special needs child may be asked by her husband to get rid of the child, if the marriage is to survive. The fortunate child could go to grandma’s house, the less fortunate one ends up in an orphanage or a home for children with disabilities while the most unfortunate one is ‘quietly aided’ to go back to the creator.
The couples who choose to weather the storm of their children’s disabilities and refuse to hide them face challenges. Some of their friends may not want to associate with them. They may insinuate that the children were used for money rituals and made disabled to increase the wealth of the parents or the parents requested for the children through diabolical means.
A child with a disability may not be invited for birthday parties or sleepover at friends’ homes. I remember once when my younger daughter was invited to a birthday party by a family friend and I told the woman calmly that I was coming with everyone in my house for the party. My children, their nanny and I went to the party and had fun.
Choosing a good school for a child with special needs is not a walk in the park. It takes humility and a refusal to give up. After a few doors were shut in my face, I had to pause and reassess my approach to the search for a school for Nimmy. Some heads of schools said they did not have any vacancy and the other schools that had vacancies were very expensive. I spoke to a friend who is a special needs teacher and she referred me to a mother who had a special needs child living in my neighbourhood. This mother recommended the school her daughter was attending and that was how Nimmy was admitted into a school.
One would think that if a special needs mum’s home is troubled and she has been rejected in the public, then her soul should find solace in the house of the Lord. Yet some churches are not built to welcome people with disabilities. It’s not so much the accessibility of the building but the lack of warmth and empathy for people living with disabilities. Some churches have categorised children with disabilities as being under demonic influence.
The truth is that a child doesn’t need to have a disability to have a demon. Children who develop normally can have demons too. In fact, I have been to some churches and seen lovely, healthy looking sisters and brothers fall and roll on the ground and manifest different spirits during deliverance sessions.
It is true that Jesus healed many who had demons but not everyone He healed was possessed with demons. Yes, the Bible says that the origin of all diseases lies in sin. The original sin was committed by Adam and Eve and not my husband and I. Please note. I am not against prayers. I believe in prayers. If you can pray for your child that has malaria, then pray for the child that has cerebral palsy and do not say the child is possessed by a demon.
Dear Worship Leader,
I know you mean no harm and all you want to do is to motivate people in church to praise God when you say, ‘If you know that you woke up this morning and you could see, you could hear, you raised your hands and they moved, you raised your legs and could walk, jump up and shout hallelujah.’ In the past, this motivated me to jump up and praise God. Today, I have a child with movement disability and I have been given the privilege to look through a different window and to ask the question, ‘Is praising God the exclusive preserve of the physically fit?’ Because I have checked the Bible and it says, ‘Let every living thing praise the Lord.’
Dear Special Needs Mum,
God loves you and your child. Nothing, not sickness not pain, nor death can separate you from His love.
Dear Church Leaders,
The house of God is supposed to be a safe haven for the desolate and afflicted soul. Do not add more burden on the burdened.