Living with Cerebral Palsy: A story of strength

Guardian Nigeria

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00:00Cerebral Palsy, two words that may change your life but never defines it.

00:11It's more than a diagnosis, it's a journey of strength, resilience and love.

00:17Yet, behind every step, every challenge and every triumph, there is a story, a story of

00:24families navigating the unknown, of communities coming together and of individuals proving

00:30that ability is not limited by disability.

00:34Today we listen, we learn, we stand together to raise awareness, to break misconceptions

00:41and to celebrate the strength of those living with cerebral palsy.

00:54My name is Adesanya Adebi.

01:11My name is Bukola Ayinde.

01:17Before we talk about cerebral palsy, something actually will usually lead to cerebral palsy

01:24and which is asphyxiation, and asphyxiation is a short of oxygen supply to the brain and

01:32which in turns will lead to cerebral palsy.

01:37It could be, asphyxiation could be mild or severe in whichever case it is and it could

01:45lead to cerebral palsy.

01:46I'm the founder of Diary of a Special Needs Mom initiative and I have two lovely daughters

01:53and my first has cerebral palsy, she's currently in secondary school and she's thriving.

01:59Cerebral palsy in turns is brain damage, brain damage, it could be partial, it could be total

02:09brain damage.

02:10While I was pregnant I had preeclampsia, which is a protein in the urine, so I had an emergency

02:17CS, so she came up very early and she weighed 1.2 kg, but even as at that, I mean, we are

02:25sure everything was okay, she was in the incubator, yes, she had mild jaundice and she had her

02:32treatment, however, she had apnea, that was, you know, she wasn't breathing, then she was

02:40resuscitated, you know.

02:44After that, her health improved, we were released from the hospital and we went home.

02:53Four months after that, you know, she wasn't meeting her milestones like, you know, sitting

03:00and holding her neck properly, her neck being able to carry her head, you know, she would

03:05wobble.

03:06I went back to the hospital and they were like, oh, she's a preterm, give her some time, then

03:10at eight months, she still wasn't meeting any milestones, so we went back to the hospital

03:15and ran some tests and she was diagnosed with cerebral palsy.

03:21We actually had the baby in 2011, there are so many things that came with it, but at least

03:33This was just, it was just a medical negligence that led to our own case, because a lot of

03:42things went wrong, which we cannot start talking about, it was a medical negligence that in

03:49terms, we had to file a case on it and all of those things.

03:56We were devastated, I mean, it was as though the world had crashed, you know, because after

04:04that initial diagnosis, we had to meet a neurologist who said on a scale of one to five, if one

04:13was least, five was most affected that she was a five.

04:17So I don't think it's a news that any parents want to hear about, but we were devastated

04:27and my first reaction was, oh, my enemies have done this and I went from, you know,

04:34one church to the other church, praying to God to heal my daughter and when that didn't

04:41happen the way I wanted it to happen, I became depressed.

04:46In fact, I wasn't even leaving my house.

04:48I only went out maybe to the hospital, to the bank, I wasn't talking to anybody, I was

04:54totally depressed.

04:55Ah, well, it was a very challenging moment, it was really a very tough one, because until

05:07that moment, I never knew what cerebral palsy is.

05:13The unfortunate thing is, we didn't really know about those early signs until we confirmed

05:21that it was cerebral palsy.

05:24Now, one of the things we saw, even when she was being discharged from the hospital, after

05:32I think the sixth day that she was given birth to, as we were going home, we saw her jerking.

05:37She was just jerking, jerking, jerking, and even while the mother was asking me, why is

05:44this girl jerking?

05:45I said, no, you know, you have gone through a lot of stress, she has been stressed and

05:49all of that, just leave her alone.

05:52But unfortunately, over time, we realized that she started running, she started having

06:02seizures.

06:03Cerebral palsy is the damage to the parts of the brain that affect the muscles and movement.

06:08We need our muscles for everything, to smile, to breathe, to walk, to stand.

06:15So from all over, we need our muscles and that part of her brain was affected.

06:21So when she wasn't meeting her milestones, like even her smile was lopsided to one side,

06:28her head would wobble, she couldn't crawl, she couldn't turn over, you know how a baby

06:35would try to crawl, she wasn't doing all that because at every stage, babies are supposed

06:44to meet particular milestones.

06:46So once she wasn't meeting that, you know, as a first time parent, I just, I knew, you

06:54know, at the back of my mind that something was wrong, but I blanked my mind in accepting

06:59that something was wrong.

07:01So it took my aunt, you know, my husband's hand to say, go take this child to the hospital,

07:09get a diagnosis so that you know what you're dealing with.

07:12So once she has temperature or she gets too cold or something like that, she started having

07:18seizures and all of those things.

07:21So, but another sign is, you know, children at three months or thereabouts, you start

07:30seeing them manifesting seeds, their neck become firm and all of those things.

07:38But unfortunately, as is in this, like that, we have to keep supporting her, keep supporting

07:46her, we have to put her in a carton, put some things.

07:50It was, it was really something else, but all those symptoms, we didn't see it like,

07:58because we don't even know what cerebral palsy is all about.

08:01So we didn't see it as anything until we get to know that, yes, it was cerebral palsy.

08:12Initially, we really didn't find any care except for the fact that we keep rushing her

08:18to the hospital at every point in time, during the day, at night, even in the middle of the

08:25night, once she had seizures.

08:29Almost all the hospitals in Laker State knows us.

08:32So we keep rushing her in and out of the hospital.

08:37Later, find out about a school called CDC in Surulere.

08:43Then we enrolled her, CDC, Center for Stomach Development, I've forgotten.

08:50It's at Surulere, it was there we get to know about, okay, therapy, speech therapy, occupational

08:59therapy, physiotherapy, and all of those things.

09:03Initially, I mean, the focus was on my first daughter, Oluwalonibe, trying to get her all

09:10the help, if she's sick or, you know.

09:14However, along the line, we began to notice that her younger sister felt, you know, neglected.

09:22There was a day someone came to the house and called her Mimi's sister, and she told

09:27the person, no, my name is not Mimi's sister.

09:30I have a name.

09:31My name is Oluwakwemi.

09:32You know, we laughed over it, but for me, that was a wake-up call.

09:38So her dad and I decided to, you know, ensure that we have time for her separately.

09:44So, I mean, she loves to play.

09:47Her elder sister loves to watch TV.

09:50So we ensure, you know, she can go for play dates with her friends.

09:54We take her out separately.

09:56Then we also have, I mean, one-on-one with her, just to let her know that we love her

10:04and we don't love her less.

10:14Managing disability in Nigeria is like walking through a maze, because I even realized that

10:23some of our doctors are not vast when it comes to the knowledge of treating children with

10:29disability.

10:31Then when it comes to therapies as well, you're looking for a physiotherapy, you're looking

10:38for a pediatric physiotherapist, not just any kind of physiotherapist.

10:44You're looking for an occupational therapist.

10:46You know, so for me, I had to do a lot of research, and I heard so many things, you

10:54know, and one of the things I heard was, oh, children like this, in quote, do not go

11:01to mainstream schools.

11:03So, oh, I should take her to a special needs school.

11:05We should focus on just her being able to sit, to walk, which was what we did initially,

11:11you know.

11:11But when we got to the special needs school, the particular one we went, I wasn't impressed.

11:18You know, even though we stayed there for like six weeks, I wasn't impressed.

11:22It took the, my mother-in-law, it took her a lot to start introducing normal food to

11:32her and all of this.

11:33And so, one of the things is finance.

11:37Then the trauma is overwhelming because she doesn't even sleep.

11:46She finds it very hard to sleep.

11:48She can sleep like 10, 15, 20 minutes.

11:52Any little movement, she's awake, and she cries like all around the clock.

12:00Like almost every time you find her crying, it's a lot.

12:11Sincerely, like I said, it's very challenging.

12:16It affected everything, everything.

12:20First of all, my first child was affected badly because at that point, we almost neglected

12:30that boy because every focus was on the sister and all of those things.

12:36It affected our social life because everything became unnecessary to us.

12:44Going through my healing journey, I realized something early, you know, was that this is

12:52my life.

12:54I'm not going to get to age 70 and say, God, you have to pass this, my life.

12:59I've been taking care of my child with special needs.

13:01Then I will now go back and start my life all over again.

13:06So I knew that I was in my life, the main actor in this life.

13:12And there was no rewinding the time.

13:14So that got me really thinking that I asked myself pertinent questions.

13:21Who was I before I had my child with special needs?

13:24What were my dreams?

13:26I had to go back, you know, and ask those questions.

13:30And I realized that I had to fight for what matters.

13:33I had to fight for my relationship, for my career.

13:37And what I did was, you know, when I settled my support system, I was able to pick my life

13:44back because when I had that, I stopped working.

13:49I was depressed.

13:50And what I did after then was, you know, I took baby steps.

13:56We had to sell a lot of properties along the line, too, because you don't have choice.

14:04Even the business we opened to say, OK, let's cushion the effects through this business.

14:12She's working.

14:13I'm working.

14:14But let's look at this business to cushion the effect.

14:16At the end of the day, it was ruined.

14:23The first misconception is, I'm all alone.

14:28God allowed it to happen.

14:29It's a lie.

14:30God did not allow it to happen.

14:32Like I said, there are several things that could cause cerebral palsy.

14:43And all those things, if medically we are very OK here in Nigeria, those things are

14:53preventable.

14:55A lot of them.

14:56A lot of people misconstrue cerebral palsy to mean intellectual disorder or intellectual

15:02disability.

15:03Cerebral palsy is the damage to part of the brain that affects movement.

15:10If the child has learning disability, it is an additional part of the brain that affects

15:17movement.

15:18It is a part of the brain that affects movement.

15:20If the child has learning disability, it is an addition.

15:25It does not all the time follow that a child with cerebral palsy must have intellectual

15:33disability.

15:37The only support I could say we had, what I had to do with, she got so much love from

15:45the family, immediate family.

15:47She got so much love.

15:48So much love.

15:50And extended family at the point when things became, you know, it would get to a point

15:57that I had to give up all the support and all of those things.

16:02My best support system or the people or the person, my support system is my husband.

16:10I'm saying that because if we're not working as a team, I don't think my daughter would

16:16have accomplished all that she has accomplished today.

16:22And I don't think I would also be able to combine caring for my child as much as I do

16:30with what I've been able to accomplish with my career.

16:37The usual thing everybody says is, oh, it's not a death sentence.

16:41But I would say this, yes, in Africa, we're very spiritual.

16:49So the very first thing I would say is, you pray and have peace in your mind.

17:00Then the next thing I would say is, it's okay to cry.

17:06Don't bottle it up.

17:08Don't bottle it up.

17:09Because, you know, we're so focused on trying to get help for our special needs child,

17:18our child, that we neglect ourselves.

17:21We don't have enough time to process what we have just heard.

17:27Because you're in the community where we live, where you have myths of, oh,

17:33children with disabilities are from strange worlds.

17:37Or maybe you have sinned against God.

17:40Or somebody is saying, oh, maybe you use your child to create wealth.

17:44So there are so many dynamics going through your mind.

17:48I want to tell you to block out any negative word.

17:53If we have more support from the government to provide what and what those things they will need,

18:03I think they will thrive well.

18:05And the society will be a better place for them.

18:08I would love to see many changes in our society when it comes to persons with disability.

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