I opened cerebral palsy centre after daycare rejected my daughter – Mother

Founder and executive director of the cerebral palsy centre, Nonye Nweke, speaks to AJIBADE OMAPE about the circumstances surrounding her decision to open the centre

What are some of the biggest misconceptions about children with cerebral palsy that you aim to address through your work?

I must say that with the advent of education and also with the internet, a lot of things are changing. The biggest misconception is that a lot of people in rural areas still believe that children with cerebral palsy have a spiritual attack, or something related to that.

Setting up a centre is not necessarily to address the misconceptions surrounding cerebral palsy, but it’s to provide a place for people or families who have children with cerebral palsy, particularly families whose children are on the severe spectrum of cerebral palsy and can’t risk taking their children to schools. My centre is a place where the children can be looked after properly while the parents can go to work or do something, and improve the quality of life of the children.

Speaking of improving the quality of life of these children, how do you aim to incorporate that through your centre?

It’s to provide them with therapy, give them good nutrition, and give them medication when they need them. It’s to give them a peaceful environment where they sleep. That’s basically what it is.

Your daughter was rejected from being enrolled in daycare at seven months because she suffers from cerebral palsy. How did that make you feel?

 No mother will feel good about this. Even today, a lot of children are still being turned down in schools, and it’s understandable. If I set up a private school, the whole idea for me is to make money, and it is the government who sets up schools to train children and all that.

For instance, an individual setting up a private school; oftentimes it’s to make money, and making money entails that you want more children. You want children who can excel because it’s when the children excel that other parents will have an incentive to bring their children.

So, when you’re taking a child who cannot even sit down, and then, you don’t even have the capacity, when people say schools turn their children down, knowing what I know now, you don’t blame the schools because, oftentimes, they can’t manage the child.

Can you share your personal experience with your daughter’s diagnosis of cerebral palsy and how it impacted your family’s life?

If as a mother, you just got a diagnosis of your child for a condition that doesn’t have a cure, no mother or family will feel happy. Nobody will feel on top of the world; everybody will feel sad, and there’s nobody who will say, ‘Oh, I didn’t feel sad or unhappy’. That’s the normal emotion anybody will have. So, that was what happened; it’s normal that when you get such a diagnosis, it makes you sad.

What challenges did you face when enrolling your daughter in daycare, and how did those experiences influence your decision to open a cerebral palsy centre?

That was the first daycare I tried to enrol her in, and she was rejected because of cerebral palsy. It was obvious. The fact that I couldn’t find a place to put my child was what made me decide to do something. They didn’t take my child, and my child was at home.

What was the process like for establishing the cerebral palsy centre, and what specific services and support does it provide for children and families?

For children with cerebral palsy, you give them therapy and give them their medications and whatever necessary things they need. That is majorly what is there and it’s as simple as that.

You mentioned in a video that ill-managed jaundice is a popular cause of cerebral palsy in Nigeria. How can that be managed or prevented?

Every child or every normal human comes out with some level of bilirubin. Every normal child comes down with a bit of bilirubin and the liver is supposed to start breaking it down. But for some unexplained reason, the liver will not work well and nobody understands why. So, that is why in most good hospitals, you can’t be discharged immediately after putting to bed, they will monitor the level of the bilirubin.

So, when they see that it goes above a certain level, they will begin to manage it. By management, they use what is called phototherapy to start to break it down. But sometimes, most people are just either negligent or whatever. So, that is it, it’s by management. If it’s too high, they will do what is called a blood exchange transfusion; they remove all the blood in the child and put in another blood. It is just to reduce the effects of the bilirubin.

In your video with the BBC, you stated that the situation affected your business and also affected you emotionally. How did it affect your business?

Yes, I was running a business. Any woman, parent, or family who has a child with cerebral palsy, oftentimes, it can affect whatever you are doing, because you would have to take out time for your child to be in the hospital, and also have to take out time to go for therapy.

So, it will affect your work. One day, you are going to the neuro-clinic, the next day, you are going for physiotherapy, and another day, you are going for speech therapy. Meanwhile, your work is there. So, it will affect you. Every two weeks or thereabouts, you are going for physiotherapy, you will miss work, and it will affect what you are doing.

When I was running my business, I was out most of the time. So, you can imagine that I was losing money, I was suffering, my baby was suffering and my business was suffering. So, I had to make a choice, and that choice was to establish something which I’m glad I did. I started it (cerebral palsy centre) 15 years ago. If I didn’t do that then, I wonder what I would have been doing with my daughter now that she is old.

How has the community responded to the centre, and have you seen any changes in awareness or attitudes toward cerebral palsy since its establishment?

There have been a lot of changes. Of course, 15 years ago, the internet was not what it used to be. If you go to the internet, you will see many families coming out with their children, because things have changed. Before, there was no platform where they could take their children; for instance, if I’m not doing what I’m doing, and if I don’t have access to the internet, nobody will know I have a child like this.

Again, when they say parents hide their children, I tell them it’s not true, because a child that is not walking, how do you want to carry the child? Will you carry the child on your head to enter a bus, or carry the child on your back? So, oftentimes, when they say parents hide their children, I tell them it’s not so; it’s just society that disenfranchises the child.

How do you balance being a mother to a child with cerebral palsy and managing the day-to-day operations of the centre?

It’s just my life; it’s the same thing. It makes my life as a mum easier. I can sit down here and talk to you because she’s in the centre and she’s receiving her therapy. So, it makes my life as a mum easier. If I’m sitting here dealing with her alone, I’ll be looking for house help, and I know that getting regular house help to manage a child like this is difficult, but I have professionals who sit down with her from morning till night, amongst other children. As I said, it makes my life as a mum easier.

You spoke about the centre making it easy for you to monitor your daughter. Have you been able to go back to your food business after the establishment of your cerebral palsy centre?

No, there’s no point going back. You can’t do that. How are you going to manage that? It’s not possible. The situation with the business will not be easy to manage. Finding a shop to rent and handling the staffing for the business will be quite challenging. It’s not even something that I will contemplate.

Are there medically proven ways to prevent cerebral palsy from occurring in infants?

The one you can prevent is the one caused by jaundice because if you monitor a child very well, you can know when the bilirubin level is high.

What are some of the most memorable success stories or moments from the centre that have reaffirmed your decision to create it?

Every child that I work with has given me a reason. Every day I wake up, I’m convinced I did the right thing. There is no day I have regretted setting up the centre. You see a lot of families who need this because they can’t provide what the child needs. A lot of families are coming in. Recently, I had three families visit the centre. One came from Festac and the other from somewhere around Badagry, and I couldn’t even take any of them for different reasons.

So, I’m encouraging families to do what is needed, because as the children get older, they’re more difficult to manage, especially those on the severe spectrum, categorised as levels four and five. As they get older, they need more support. The parent is getting older and the child is also getting older. So, it’s something the parents or society must know is important.

What challenges does the centre face in terms of funding, staffing, or resources?

One of the challenges we face is people getting to know what we do. I found out that a lot of people don’t even understand what we are doing because it seems new to them. I run a free centre; the children don’t pay anything, even when they have parents. Oftentimes, you see children like this abandoned in orphanages, with no care, and the children are just lying down there, doing nothing.

There are centres like this, not necessarily like this, but where you have wealthy people take their children with different disabilities, and there are places where they charge some money. So, here you are managing children on the severe spectrum, which is the most expensive to maintain, and you are not charging any money, and you’ve done it all this long.

Some people don’t understand it, but it has proven to me that it’s doable because if you can do something for 15 years, consistently, that means it’s possible. So, you face the challenge of funding. For instance, if you are working with people that have just simple disabilities, maybe polio where children can go to school, they have bad legs.

If you are working with people like that, or some other different kind of disabilities, where the children can move from Class 1 to Class 2, or they can do some things like dancing and playing drums, but the children on the severe spectrum level of cerebral palsy can’t even do anything; they are just there.

So, getting funding is difficult because the people don’t see the progress. But for me, the fact that the child is comfortable in her skin, and the fact that the child is alive, is progress because they have a lot of health challenges. Funding, getting money to pay; you don’t have grants, it’s just maybe one or two organisations, giving you little money, but we’ve survived 15 years.

How can individuals or organizations help support your mission?

They support us; people make donations, and organisations can do their CSR. That’s how we survive this battle. Individuals, friends telling friends, then maybe somebody’s telling a corporate organisation, when they want to do their CSR, they come and do their CSR with us, and that’s how we’ve been doing it.

What advice would you give to other parents who might be struggling to find support or acceptance for their children with cerebral palsy?

I would advise them to accept that it is what the child is because once you get to that level of acceptance, it’s easier to work. For many people, it can be hard to come to terms with the fact that their child won’t be like other children. So, we tell them that as a parent, it’s how they treat their child that other people will treat them.

I always advise parents, and it is we, the parents, who will push the government towards what we want the government to do, for the children. So far, the government is not doing anything, because the parents have not come together, as one to talk to the government, or make demands. So, I advise parents, that the sooner they come together, the better for them, without the stress of policing their children, because it’s difficult to manage it alone.

What are your future goals for the centre, and how do you envision expanding its impact on families and society?

My goal is to start building a place for our staff because you have to think of your staff. The reason is that as the children are getting older, they need more support. So, you need dedicated staff. One of the incentives is accommodation. Sometimes, people build places and don’t think of their staff.

I know that it is something that requires commitment from staff. So, I’m thinking of how to do that, and we will start a training academy for caregivers because many organisations and individuals who have children like this need caregivers. So, that is one of the things we are starting this year.