CHILDREN WITH CEREBRAL PALSY CAN LIVE NEAR NORMAL LIVES
Chizimuzondu & •Nonye
Nonye Nweke is from all accounts, one of the most courageous women I have met. Her will power to survive in the most turbulent weather has made her one of the most admirable characters, too. She has conveniently transformed adversity into triumph.
Nonye Nweke is the brain behind the Cerebral Palsy Center at Surulere. In this interview with Woman of The Sun, she tells the story of her shocking discovery of her child's health condition of Cerebral Palsy and how she has found joy in coping with it. She revealed that children with cerebral palsy can actually live happily with their families and not in institutions, and get help in achieving their potentials to become productive adults living with their disabilities among their peers.
Here are excerpts
How did it all start for you?
I was married for about eight years but I got divorced. The marriage actually went on well but it crashed due to childlessness. You know that in most instances in this part of the world, it is not quite often that you see marriages where the couple has no child and it succeeds. It takes the grace of God for couples like that to continue, and where they continue, there are saddled with strains. Mine was one of such.
After eight years, it crashed
When exactly was that?
That was in 2006. And I had to move on with my life. I have always known that my life would not suddenly stop because my marriage didn't work out, after all, it wasn't any fault of mine.
What were you doing then?
I was running my own business. I was running a restaurant business. In fact, I had done a bit of fashion designing too. And so after the collapse of my marriage, I just threw myself into the business and it was really doing well. Then, after a few months, I sought to adopt a child.
Did you seek to adopt a child simply to fill in the gap of your childlessness?
Not really, I have always loved the idea of taking in a child to give a helping hand. Whether or not, I had a child of my own, I knew that I have always been passionate about helping the less privileged. You see, it is totally wrong for people to think that it is only when a woman hasn't got her own biological child that she seeks to adopt. I say that is a wrong notion.
I can tell you categorically that most women actually adopt children basically to give such children a life-line. It is indeed, a great way of helping the needy. In fact, adoption is fast becoming a fad, these days because people are realizing the need to help them.
So, how did yours go?
It went pretty well. She is such a lovely child. She was like any other normal child, growing very well until she was discovered to have had cerebral palsy
When exactly did you discover that she has cerebral palsy?
My baby, Chizimuzondu was diagnosed with CP at five months in November, 2006. When the doctors discovered it, I was shocked, then angry. You know when such a thing happens, the first reaction, naturally, was for one to be angry. I actually felt like, why should it be me? Then, it got to a stage of disbelief. You would think that it can't be true, that maybe, you are in a dream. In fact, I almost couldn't believe what I was being told by the doctors about her condition
Why was it so hard to believe, after all, you were consulting professional doctors?
It was so shocking first because this was a very normal child from the first day, so, what could have happened with such a short period? After disbelief and denial, I gradually began to come to terms with the situation and simply accepted my fate. I knew that it wasn't happening to my child because I was the greatest sinner or because God hates me. I know that God has not abandoned me, despite of my baby's situation and the seeming difficulties
But since she is an adopted baby and you went through the normal and genuine process at the relevant authorities, one would have thought that you could easily have taken her back since it turned out this way?
No, how could I have taken her back to them? Is she a piece of jewelry that I could return if it goes bad, after purchase? When this thing happened, I actually went to tell them, (ie the Ministry of Women Affairs and Social Development) of what had happened. And do you know that they really asked me to return the child, because they understand the full meaning and challenges of managing such a child? They were really felt for me and wondered how I could cope with the child. But I vehemently refused
Why didn't you explore that option, after all, they would arrange for another healthy child for you?
How could I have done that? I value my baby so much and she can't be traded with. So, if she was my biological child and maybe, she was discovered to have this problem just like she has had now, where would I take her to? Who would I return her to? Would I throw her away or kill her simply because I can't mange her condition? No, my child is most precious to me, despite her condition. The truth is that no one plans or expects to have a child with any form of disability particularly cerebral palsy, but if it comes, you just find a way to cope and make the best out of a seemingly bad situation.
So, how did you manage after your initial feelings of shock and denial?
I started looking for ways to cope with it. I actually started surfing the Internet, studying what exactly is cerebral palsy and how to cope with it and most importantly, how best my baby can be helped. I believe that with awareness and enough information, I can really manage her
As I studied, I came to understand that cerebral palsy as a condition may not be curable but can be managed. I learnt that many patients of cerebral palsy can actually live near normal lives, if their neurological problems are properly managed.
When you made up your mind to still take her in, love her and give her your best, what was the reaction of your family, knowing her health problems?
Every one, my mother and all my siblings have been most supportive and encouraging since. They have been my pillar of support. In fact, they said that if that is what I have chosen to do and since I find joy with the child, and they have been with me, all through
How old is the baby now?
Chizimuzondu is four years old.
This health situation is no doubt, very challenging financially and otherwise. How have you been coping?
It has not been easy at all but God has been most faithful. To take care of her is such a financial burden. I have had to close my business on account of it, essentially to be able to take care of her. It is time consuming and difficult, indeed.
After the diagnosis, we began treatment and an essential aspect of her treatment is therapy which she does on a daily basis. So, I found a place at Surulere where I was taking her everyday. I took Chizimuzondu five hours daily to a center that manages children with various forms Ã¬of disabilities including DOWN syndrome, attention deficiency syndrome, autism, and cerebral palsy.
I also take my child for physical therapy to teaching and orthopedic hospitals over the years where I have learnt various procedures for assisting the child to achieve developmental milestones
Is she your old child?
Yes, for now.
Was there a time you thought of throwing in the towel because of the enormous challenges?
There are times l feel like that but God has been gracious to me and my baby.
I understand that you now, run a centre for children with cerebral palsy.
How did it start?
Yes, I needed a center where cerebral palsy alone is managed for my baby but where I was taking her, that wasn't the case. Aside from that, at some point, I thought that as mother to such a child, I know that I am not alone in this problem. There are other women I also was meeting whenever I took my baby for therapy. So, I thought it would be a great idea to interface, network and share ideas and information on our children's situation, that was how I started it.
So, how has it been?
Its been going on well. I have about four kids at centre. I have a physiotherapist and special education teacher visit the centre twice weekly to work with Chizimuzondu. She has shown a lot of improvement. But at some point, I became convinced that there is a need for a center dedicated to managing CP, where parents can leave their children and go to work, assured that their children are receiving all the needed therapies. It is the search for such a center that gave birth to the Cerebral Palsy Center. This center is started with the hope that children with cerebral palsy will live happily with their families and not in institutions, and get help in achieving their potentials to become productive adults living with their disabilities among their peers.
At this center we encourage parents to register their children as soon as they are diagnosed with cerebral palsy because early intervention therapy is the key to successful rehabilitation. With proper management and adequate therapy children from the Center can function well in regular schools, we advocate their inclusion in these schools. The center provides physiotherapy, occupational and speech therapies. It also provides the services of special educators and information on cerebral palsy in general.
Families of children with CP are welcomed 'in the Center to interact with their children and with each other. This center is not just a place of therapy, but a place where families can find each other, share joys, heartaches and learn from experiences gained from raising children with cerebral palsy.
How do you fund the centre?
It has been solely from philantrophic friends and family members. When I started, I had to close down my business. I had to use the building originally for the shop and turned it into the centre. I am appealing to well meaning and kind hearted Nigerians to help and support it.
How would you describe the treatment at the centre for patients of CP?
The cornerstone of CP treatment at the centre entails daily therapy administered frequently, with intensity for a long period of time. The CP child needs physicaÃ® speech and occupational therapies to enable him develop skills for him to explore the world as a child and function in the classroom and later as an independent adult. The therapy should be tailored to reflect these changing demands.
Recently, a school here in Lagos refused taking in some kids with a particular type of disability for obvious reasons. What is cerebral palsy?
Cerebral palsy is an umbrella term used for a group of disorders affecting body movements, balance and posture. Loosely translated, cerebral palsy means Ã¬brain paralysis. It is caused by abnormal development or damage in the part of the brain that controls muscle tone and movement. It is not a disease; it is not hereditary or contagious.
How do you recognize a child with cerebral palsy?
Babies that donÃt cry right away at birth, or have jaundice that is not properly managed may have cerebral palsy. Early signs of CP include limpness or floppiness of body. Infants with CP, are usually slow to reach developmental milestones such as having head control, rolling over, sitting without support, crawling and walking. Other symptoms include persistent primitive reflexes, developing handedness before age 18 months indicating weakness or abnormal muscle tone on one side of the body.
What are the problems associated with CP?
Problems and disabilities related to CP range from very mild to very severe depending on the level of the brain damage. They may be very subtle, noticeable only to medical professional or may be obvious to parents and care-givers.