We are not Down - Tola Makinde
When my daughter was born, we didn’t have a normal naming ceremony. You know the kind with happy faces and congratulatory stares. There were sad faces and gloom in the air. We all knew there was a problem right after delivery.
Years before, while in the United States, I had met a child with Down Syndrome. He was 4 years old at the time. I saw how hard it was for him to perform routine activities. Still, he lived his life unbothered, even while scattering things and being “everywhere”. I didn’t know that this first exposure was to prepare me for what was coming ahead.
I looked over after her delivery and saw that the doctors were hitting and stimulating her, trying to get my daughter back to life. Moyin didn’t cry when she was born. Oxygen wasn’t getting to her brain, but soon enough, she came round. I got some relief, but my relief didn't last long because she stayed quiet. She was not crying for food or seeking comfort like other babies would. I knew she wasn’t a quiet baby and that something was wrong. The doctors took her back from me, their faces confirming my fears.
Nothing prepares you for having a child diagnosed with Down Syndrome. Leaving the hospital is the easy part but I had to go home to deal with it. My Blood Pressure shot -up because I kept crying. The tears kept flowing but the hallucinations made it worse. I was having all these nightmares about my baby, and I’d wake up scared.
“I don’t want anybody to see my child this way. God, take away this thing”. I prayed to God but got no answers.
Dealing with the condition in the beginning was very tough. At three months old, Moyin had a hole in her heart. She proceeded for her first surgery at eight months old. She has had 2 heart surgeries. The second was the most traumatic because it was the fifth surgery of her life. 50% of children with Down Syndrome would need corrective heart surgery in their lives. This alone is enough of a burden to bear.
I was desperate to know she was not alone, that there were other kids like my daughter. It didn’t take long before I started seeing kids with Down Syndrome in church, and on the streets.
Immediately I’d see anyone, I would look to talk to them and talk to their mom. I was dealing with the stigma carrying her and hiding her in the beginning.
My pastor had come to see me while we were frequenting the hospital. Women from my church also visited. On seeing my baby, they said I had to “pray for mercy”. They said that while they were praying, God revealed to them that I should pray for forgiveness because the “affliction” was as a result of the spirit of disobedience. Hearing this left a sour taste in my mouth, what disobedience I asked? I had not obeyed one of the church rules while I was heavily pregnant and was high risk. I was sober and angry at the same time on hearing this news.
At 8 months, we were in India for her heart surgery. It was successful and on coming back to Nigeria, I resettled. I moved closer to where my parents lived this time. I quit my Bank job and started back doing business.
It was not easy for me coming back to zero, starting a business, liquidating everything.
My gratuity got cut short because I left. I tried to put myself together and face this new phase of my life.
I had decided to begin to raise awareness about children living with the condition.
One day in the church I was attending, I saw a boy and his mom. I walked up to her and asked, “what is your son’s name?’. I had seen her boy had Down Syndrome. She started telling me how it had been. I replied “Yes, he has Down Syndrome and that’s okay. It’s not the end of the world”. Would you like to meet my daughter, she has Down Syndrome too.
I got close to this mom and her boy and started visiting them. The awareness started from home visitations. I started seeing people point me to different houses. These houses had children that have never stepped out of the house, often regarded as imbeciles, slow and can’t learn. Down Syndrome comes with a learning disability. People weren't talking about early intervention in caring for children with Down Syndrome. For the most part, the children stayed home while parents went to different prayer houses. They are often fasting and praying for a solution.
It is not a spiritual matter. It is a genetic condition. It comes with about 50 features. A person with this condition would usually present at least 5 of those features. This includes slanted eyes, open mouth at rest, hypotonia (low muscle tone) etc.
Langdon Down was the doctor that discovered the condition. That is why it's called Down Syndrome. It’s not because they are down.
Awareness about the condition was hard when I started doing it. People would take the flyers and tear it up in my presence or throw them away. I did not know I would set up a learning centre while I continued creating awareness.
I needed a school to put my daughter in. I searched for the right school that would cater to her needs, but I couldn't find any. I realised that a lot of the children were not in school the same as my daughter. They were seen as slow, can’t even say their names with the obvious speech impairment. I wanted my daughter to live a normal life. Whenever I travelled out of the country, I got tools for therapeutic interventions. When I took the decision to start the MoRainbow Down Syndrome foundation, I had all these experiences. I knew I had to do it, but I thought who would help me? My family and a few friends were all I had and that was all I needed.
I started with a staff of 3 which has grown to 21. It was hard having to manage all these while still sorting my daughter’s surgeries. I was also responsible for the wellbeing of the children at the centre.
I ran periodic checks for some of the younger children and realised out of seven, five had heart problems. I was in a dilemma “how do I tell their parents that we ran tests and there is a problem with their hearts.” We raised funds for Joshua who had his surgery done, Victor also survived and has his heart closed now, same as Chiamaka, while Chidinma has pulmonary hypertension already and her case was 50-50. They couldn’t operate her and she has had to be on medication for close to four years till date. Paying the bills is very draining and not much help is coming. We need funds to get the work done. Our rent runs into millions and I can’t tell you I know exactly how these bills are being paid, it’s a miracle.
Early intervention has been what has helped me with raising Moyin. It is what continues to help a lot of children with Down Syndrome. It will improve their lives, their walking, gait and aid their development. It is not going to change, remove or delete the extra chromosome that causes it.
I started talking about early intervention online when it was not popular in Nigeria. I remember experiencing cyberbullying because of it in 2014. I was new to instagram and this person made a comment on my post about my child. He said, “this baby looks like a f**cking animal”. I cried when I saw it, I got scared and deleted the comment on my timeline. If I hadn’t deleted it, a lot of people would have bashed him for saying that because he didn’t know what he was saying.
This is even different from what I have seen people that know did. Some stopped calling, some were pregnant, and I never knew they had their babies. They didn’t want to move close to me thinking if they did, they would have a child with Down Syndrome.
Some people didn’t want to relate with me anymore because they don’t understand the condition. It was draining dealing with it all, so I had to focus all my energy on my daughter.
Moyin, family and I continued taking life bit by bit. She began therapy - physiotherapy, occupational therapy and others like motor, speech. I stopped googling and started doing. I started to travel and visit Down Syndrome associations in America. I got my first hands-on training from the USA and believed my child would thrive and talk. This became very important when I wanted to start the MoRainbow Down Syndrome foundation. I told myself “Every child that comes here will improve."
I knew I wasn’t starting a regular school, and I knew what to do. I already understood how they learn, understand and see things. I know for example that when you give them a book with the picture of a ball, and want them to read, you have to give them time. Enough time for the brain to master the picture first and then the spelling b-a-l-l.
I have done a lot of experiments to know the things I know about children with Down Syndrome. When parents come around, I am usually able to tell them what I expect their child to be doing at a particular age. They always affirm “yes, that’s what is happening”.
Moyin started reading when she was five years old. Some children with Down’s Syndrome may never be able to read. For some, they were not exposed to it early. Others may have other co-occurring conditions that may prevent them from reading. They also learn in different ways - some by seeing what you do, some by touch, some by reading your lips. I let my teachers understand these facts even if I must repeat it 100 times. They have learnt to be creative in working with the students. The goal is to help support them get the best out of their lives. I once had a complaint about some children that whatever you said, they never seemed to respond. Instinctively I thought the child needed to get her ears checked. They may have a build-up of wax or infections that is hindering the child from hearing. After solving the issue, the child goes back to enjoying learning.
Children with Down Syndrome are strong willed. If you meet them, you will know they are the most strong-willed human beings.
The staff that cater to them have also been amazing. I have staff that have stayed with us for five years, some eight years. There’s one that started with us and she’s still here.
The most important factor I have realized in dealing with the kids is patience. Repeating something to a child up to 10 times and not getting frustrated. This is the patience I am talking about here. We began training our teachers to be patient. This is because if you tell the child “Give me the book” for example, the child hears “book” but not “give me the”. Or the child hears something different like “a dog” while you say, “a book”. In situations like this, you can only be patient and help them understand you. Processing for them takes longer. Oftentimes the child has to read your lips so you can’t talk to a child with Down Syndrome standing up, but you must maintain the same eye level contact. These are some things I try to get the teachers to unlearn in dealing with the children. Going fast with them is not going to work.
I also encourage them to be firm and assertive and develop strategies that help the students cope and progress.
From various training sessions I've had, I go back to retraining my staff. It has helped us understand that it’s not a one-size-fits-all approach. We are sure of some approaches guaranteed to always deliver results. We try to always apply them and tweak them from time to time.
When some of the children came, they were not talking and now they can’t keep quiet.
Sometimes we don’t get the money we need to finance the work we do but I am in awe of how things happen for us. A tech brand reached out to us and wanted to offer some help. Then they cancelled and I was heartbroken. I knew how much we needed the support we could get, and it made me sad. We appreciate school bags and stuff, but we need money for the work.
My daughter loves to dance and most of the children love to dance. I researched it and found dancing common with a lot of children with Down Syndrome. It doesn’t mean that it’s the only thing they can do. They can add value in other areas. We are observing and leveraging their strengths and helping them harness their potential. We pay attention to some of their weaknesses too, like having poor fine motor skills. We work on these areas too but focus more on them maximizing their strengths. We want them to be able to do most things people without Down Syndrome can do but there is no competition and no hurry. I don’t mean they will have to sit for academic exams and I’m not saying they can’t sit for it. I want a level of education for them. I want them to have real life skills. Like how to board a bus, how to talk to strangers, and communicate their feelings. Making them well rounded humans so they can add value back to the communities is what we aim for.
One of the staff currently employed as an assistant support worker has Down Syndrome. He has stayed with us for up to 6 years and now he’s doing amazing helping out with the work and getting monetary reward.
We clock 10 as a Foundation in August and sometimes I say to myself, how the heck did we get here? Looking at all the challenges, I don't even know how to begin to say thank you to God and to people that believe in the vision. It's been a hell of a ride, a rollercoaster yet rewarding one. That's all I can say.
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