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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.