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026. How to Thrive with a Child with Disabilities

Our conversation today is with Tola Makinde, Ed, Moyinoluwa Rainbow Foundation for Down syndrome, Save Down syndrome Ambassador, World pulse Ambassador. She has led Moyinoluwa Rainbow Down syndrome Foundation, her brain child in fulfilling its mission of making each day better than the last for persons living with Down syndrome and their families. She is known for her ruggedness in advocating with persons living with Down syndrome while creating awareness on early intervention, health care and education in grassroots communities, national and global platforms.  She continues to work tirelessly to end the genocide, discrimination, and mistreatment of people with Down syndrome in Nigeria. Tola holds a B.Sc in Management Studies, Advanced Diploma in Early childhood education. She is a trained member of several Down syndrome Associations, a Dr. Nadia Falcao and Funmi Babington Ashaye mentee, an ambassador for Save Down syndrome Inc. Kentukcy, USA. She has received various National and International Awards and certificates of Achievement, won the Prestigious Eloy award, listed amongst the 100 Leading Ladies Africa 2020 and the SHE-E-O 2020 Award

We had a heartfelt conversation about her journey with a daughter that has Down Syndrome. She shares how she is able to thrive with a child with disabilities. We all can learn a thing or two from this video about how to persevere in the midst of trials.
 
Episode Highlights with Tola Makinde, Ed: 
  • How to thrive in the midst of trials
  • Embrace diversity
  • A disability is not a death sentence
  • Don’t give up!
To implement what you learn, join our Facebook Group: Wellness Surge Family.
 
Connect with Tola Makinde on Instagram @morainbow_downsyndrome, on Facebook at Morainbow Down Syndrome Foundation and their website at modownsyndrome.org

Show Transcript

Introduction: [00:00:00] Welcome to the  Wellness Surge Podcast with Dr. Adeola Oke. Each week we discuss our wellness journey with real people like you and me. We have conversations about food, fitness, mental health, financial wellness, and much more, so you can get back to the real you. To make sure that you’re up-to-date with this and other wellness topics, visit wellnesssurge.com. Information presented here is for educational purposes only and is not intended to diagnose or treat any disease. Please do not apply any of the information presented here without first speaking with your primary care, your provider. Now let’s head onto the show.

Dr. Adeola Oke: [00:00:36] Hello, everybody. Welcome to the Wellness Surge Podcast. My name is Dr. Adeola Oke. And today we’re going to be talking about ‘How to thrive with a child with disabilities’. And I have the awesome Mrs. Adetola Makinde with me here today. Please say hello to everybody!

Tola Makinde: [00:00:54] Hello everybody. Good to be here. Alrighty.

Dr. Adeola Oke: [00:00:58] So she is down in Nigeria right now where there’s a lot of civil unrest, but despite that fact she’s still on at this invitation.

So it’s a big, big, big, thank you to her. We appreciate her. Alrighty. So Mrs. Tola Makinde is the founder and executive director and proprietress of the Morainbow Learning Center. She has led  Moyin Oluwa Raninbow Down Syndrome foundation, her brainchild in fulfilling its mission of making each day better. And the last four persons living with down syndromes and their families. She is known for her ruggedness in advocating with persons living with down syndrome, while creating awareness and early intervention, healthcare and education in grassroots communities, national and global platforms. She continues to work tirelessly to end the genocide, discrimination, and mistreatment of people with down syndrome in Nigeria. Tola holds a BSC in management studies and an Advanced Diploma in Early Childhood Education.

She is a trained member of several Down’s syndrome associations, a Dr. Nadia Falco and Fumi Babington Ashaye mentee, and ambassador for Save Down Syndrome inc. Kentucky, in the United States. She has received various National and International Awards and Certificates of Achievement won the Prestigious Eloy award, listed amongst the 100 Leading Ladies in Africa, 2020- Good Job!!! -And the SHE-E O 2020 Award.   Welcome. Welcome. Welcome. Mrs. Tola Makinde.

Tola Makinde: [00:02:33] I’m excited to be here today. Thank you Dr. Adeola.

Dr. Adeola Oke: [00:02:36] Okay. Appreciate you. Alrighty. So it kind of like, we kind of have a little glimpse into your life, right. But first and foremost, we know you’re very passionate about down syndrome. So do you have a child that has a disability- down syndrome?

Tola Makinde: [00:02:54] Yeah, of course. Yeah. I mean, thank you very much for having me here today. The Dr. Adeola. Oke. And  yes, yes, yes. I have a beautiful daughter with down syndrome whose, um, diagnosis came nine years ago and that was 2011. You know, it felt like my whole world was crushed, like the world stopped and everything.

Everything -I can tell you for real, like- you know, literally just kind of stopped for me. I kind of had to sacrifice my 11 years banking career, which came to a halt as well. I resigned from my job. And then, because I’ve been exposed to a child with down syndrome in, North Carolina, in Charlotte, in the U S and I seen this child, year in year outs,  and then having a child seven years after, that connection kind of made me feel- Oh, there’s a lot of work to be done. And then I resigned from a banking career and I knew I was ready to face it. So yeah, she’s nine years old. Her name is Moyinoluwa, we call a Mo Bennis or Mo for shorts.

Dr. Adeola Oke: [00:04:06] Oh, okay. So I can see that’s what led you to, to lead the Mo Rainbow foundation, hence Moyinoluwa Rainbow Foundation, right?

Tola Makinde: [00:04:15] Yes, absolutely. Alrighty.

Dr. Adeola Oke: [00:04:18] Alrighty. So you know what? It’s so refreshing to see a fellowNigerian appreciate and strive for people with disabilities, because it’s not very common. And, and so I say a big, thank you for you- to you. Because like I told, I told her I’ve been looking for somebody like her for a while, because I like to see people like that thrive despite challenges. So I would like you to please talk to us about how a parent, uh, how you were able to get past that hurdle or not really able to get past it, but accept it and thrive?

Tola Makinde: [00:04:52] Oh, well,  I can’t say, I can’t say that it’s been easy or it was easy way back in 2011. Awareness wasn’t as much as it is now. You know, a lot of people just thought then that they could- even the pregnant mothers, they called, their unborn child could contract the down syndrome , just moving close to my own daughter.

And it wasn’t-

Dr. Adeola Oke: [00:05:20] Oh my gosh! . No, no, hold on Steve. Say that again. People thought their children could get down syndrome just by going close to your daughter.

Tola Makinde: [00:05:28] Yes. Yes. Yes. Um, so you see people, you know, you see them kind of —–in the hospitals, and then they change seats. If, if we, if we need to sit beside them, they move away, you know, even at the airports, there, you see people move away from us.

It was a very trying time for us, you know? Even when she was born, people said a lot of things like- Oh, it’s not normal for me to have a child like this that I must have, um, disobeyed God. At some point I needed to ask for forgiveness. You know, uh, it’s funny now, but then, it wasn’t easy because it was just, was still fresh.

And, you know, imagine you have a baby that’s just been diagnosed five days after birth with down syndrome. And then the doctors are telling you something like the baby as a whole, you know, has a hole in the heart, has a heart disease and, you know, has probably vision issues. And you have to deal with all of that, and you have to deal with people trying to like, you know, look at your baby.

Having a second look your baby, which, which would be… you know, you you’ll be actually able to read from their faces that: Oh, there’s a problem. And maybe they kind of try to run- move away from you. And it was also confusing. It was, um, I was still in shock. My family and I were in denial for a short time, you know, because I’ve been exposed to a child with down syndrome several years before I had my daughter. So I think we had our moments, you know. I had, I had my moments like that. There were days I wouldn’t even remember what time it was. I wouldn’t even come them out of the room. Th- there were days I would cry. There were days I would pray and fast to wish the features away because any child born with down syndrome, most have at least five of the features.

You know, you see, and then there were days I wished it away, you know. Then, I came down with a blood pressure. I was rushed to the hospital two weeks after her delivery. And then I just thought everything was over with , I mean, I, I just thought I wouldn’t be able to cope with it, but guess what? I didn’t have to stay in position for a long time, because I had to look back, to draw strength from, I told you about my friend. I had met – I mean my friend in the US then. I think God just made it possible for me to have met him before having my daughter. I don’t think I would have been able to like, you know, come out of that denial stage quite on time.

Like quite frankly, honestly, because I know that it’s not as easy as I’m saying it because you have so much to deal with. Yo u’ll have those stigma, the community, even friends, extended family. Stories, like when I get to hear stories, like people say that, oh the woman is a witch for having a child like that.

And sometimes it’s being kicked out of  my, uh, marriage.  I mean, it’s so hard reaching, so yeah. For me, I had to find, I had to find a balance between all of this craziness going on. I had to find time to like, enjoy, you know, just look into my child. I tell her she’s going to be okay. Whisper into her ears that said, she’s going to be fine.

You know, my younger son says doctor in the U.S. and she kept telling me don’t worry. Don’t worry. It’s gonna be fine. I’m like, okay. I just want to go into those words. You’re going to be fine. So every day I carry my baby, I cry. I tell myself it’s okay to cry. I’m still trying to compete my book, you know, titled: It’s okay to cry. Because I realized that nobody would ever think nobody would ever understand what you’re going through. So, I mean, it’s, it’s okay-  it’s okay to cry. It’s like that. I mean, so I did then was to find time to bond with my child, you know, um, Find time to also have a laugh. No, it was a crazy moment.

I can’t even lie. So, um, thriving has not been easy because for the most part, you’re coming out of a situation and going into another one. And there’s so many, many, many challenges. You know, It messes with down syndrome as susceptible to, and, um, when we had to raise funds to go to India for heart surgery was the very hard, was the hardest time-I can say for a fact it was the hardest time. Because then imagine me a banker, I’ve been thinking of my gratuity, the millions that all of a sudden, you have this diagnosis.

You have a big, I’d been waiting for a baby girl. You know, because I had boys before and then all of a sudden, someone is telling you, you need to look for 5 million Naira for heart surgery. And I’m like, okay, okay, let’s see how much I got. Checking your bank account. And all the, all the money just develop wings and they’re gone and you know, you have to spend money.

So it was like a movie, right? You know, when I began to sell all of my gold, I add some gold, gold, jewelries. I used to just buy when I was working and I started selling them one by one. And the, the, the funds I was getting wasn’t even ammounting to anything. And I needed to take my daughter for heart surgery because when she was diagnosed at six months and at eight months, we needed to do the surgery.

So she wouldn’t develop what you called pulmunary hypertension and then it was a struggle. My sister, it was a struggle. You know, I almost began to sell my pots, my pants, my pencils. I almost be, I just couldn’t. I knew I couldn’t sell my clothing as well. I didn’t know about this, you know, I’m still yet.

I couldn’t even gather the funds and I’m like, what? I’ve been a banker. What happened? You know, it wasn’t really easy then, but thankfully we got to friends and family. You know, rallied round or some weird —– you know, make up the money. Went to India, came back. She’s got a device in her heart. And that was at, since she was eight months, then imagine people, doctors telling you go, the device shifted.

We need to blow another medical – this, that, you know, then she needed to do a surgery. Last year, she had a large adenoids. She had sleep behavioral disorder. You know there’s just from one thing to another. And honestly it’s not been easy, but guess what? Persons with downs syndrome themselves, they, they want to be successful.

They have a way to drive. I don’t even know, like, because I’ve met so many mothers and I’ve seen their children, despite the challenges, the elf challenges, they just want to live. They don’t want to die. You got it. The health system in Nigeria is so poor and that’s why we had cases of cardiac arrest or sorry, heart failure. Some of the children that I have of being in their lives and a witnessed them, you know, of this, um, challenges, health challenges…..They… Ended up dying. It’s heartbreaking. So we find time to bond.

We find time to discover what exactly it is my daughter, you know, enjoys doing and whatever way it is, that is an interest. And we’ve been able to leverage and all of here strengths and. Uh, we’re just happy. Okay.

Dr. Adeola Oke: [00:13:25] Let me kind of summarize what I think I’m getting, because seems like, so how you’re able to thrive is just acceptance.

First of all, must accept it. And then just living and enjoying your baby. Because I used to work in Johns Hopkins hospital in the neonatal ICU, and I saw a lot of peoples with disabilities down syndrome. Those babies were like the cutest babies. Gosh, they were cute, but you just like you’re right.

They always have this.

I want to survive, even though they’ll have that really tiny stage, like when they were just born, they always have this grit, like I want to survive. So I have, um, I’ve dealt not, I wouldn’t say personally, but I’ve seen them and I’ve seen the parents and you know what, I, I see the ones that do well- that did well, were the parents that just accepted it. You know, accept it, and what can we do despite this?

And so that’s exactly what I’m getting from you right now that, okay, this is happening. We cannot change it, but. We’re just going to do what she enjoys and do the best you can and just help her succeed. Right. Is that what I’m getting from this conversation?

Tola Makinde: [00:14:30] Lovely. Yeah, absolutely.

Dr. Adeola Oke: [00:14:33] Alrighty. Okay. So, so you, you decide, um, you accepted it, you found out what she enjoyed and then you decided to start a Mo Rainbow Foundation.

That is…. man. That is, yeah. That is just amazing. So what exactly do you guys do at this Mo Rainbow Foundation?

Tola Makinde: [00:14:51] Yeah. Let me just quickly talk about how I got the vision, right.

Dr. Adeola Oke: [00:14:56] Okay!

Tola Makinde: [00:14:57] Yeah, then. I mean, that would, I mean, just to give you a background. So when my daughter was three years old, I kind of tried to paint a picture of, okay, this is what I love her to become.

Okay. I’m going to help her thrive like that. Then i, I just thought, okay, we’ll be fine. When I have the money, I take her to the U.S. Give her all the cash and aid and everything. Then, you know, when you want, you know, something like when you like a red car, you want a red car and every day you go I’ll, you begin to see a red car.

Everyday. I went out, everyday I was out there. I began to see children with down syndrome. I began to see, um, teenagers with down syndrome- and I’m like, where have these people been all this time. Well, you know, then just one day I knew that I needed to like, you know, um, Be out there, but I was struggling with it. I just said, no, no, no, I’m just going to be quiet.

I’m going to just help my daughter. Then one day I met a boy. I knew this boy needed help. There was helpless, you know, then I walked up to them. And you know, the mother was kind of ashamed of the condition. Then I, I introduced my daughter to her and that kind of give her this kind of hope like, Oh, so he’s not alone.

Meanwhile, I was also rejoicing that all my daughter is not alone and that day, and I broke down and I just knew that my voice was needed there. I was hearing voices that said you needed to be out there. And what I wanted to do was just advocate for persons born with down syndrome and, uh, yeah.

Because I know for the most part, many mothers, many families feel that nothing good can come out of those kids and to be left home at home, you know. Maybe not intentionally, but, you know, because we’ll attend to your needs later on, let me just attend to your sister or your brother without down syndrome first.

You know, thinking that, I mean, like they don’t matter, but it’s not like. Some people intentionally want to, you know, you know, um, neglect their kids, but it’s just the situation. The system and everything. So I said at the advocacy walk. I just gathered a few of my friends and I told them about my dream, my vision and a few of them say, yeah, it was okay.

So we started the advocacy work, but before then, I had this nudge. I just- I just knew that I needed to be out there. I couldn’t even go anywhere again. And I met three families. I was visiting every Thursday, the whole of 2014. And then I told myself I wouldn’t be able to visit the fifty children if they just showed up now. Then I rented a small place.

All this while, my husband was thinking I was going crazy. What he was like, I don’t know what the problem is. I don’t know what you’re doing. Just, you know, I just told him I’m, I’m doing this for—– that every time I try to wish this thing away or try not to think about the state, it keeps coming like a picture.

I kept seeing the big picture and I don’t even have rest and I needed to do this, you know? And then we set up a small place and parents, you know, parents were kind of beginning to find that place. Very small one room. You know, apartment one room, just one room. And people began to, you know, um, relate to what we were doing there and guess what? I needed to, you know, let people see what I’ve been trying to talk about.

I needed to bring out my daughter’s photo. On social media. And I knew that may not be acceptable for my family, my husband. I didn’t even ask for permission because I didn’t want anybody to stop me again. Then people started coming from 2014….2015….then today we’re doing such a great job. Like we are known in different parts of Nigeria, you know. We’ve reached out to families from in the North, the South, East and Western part of Nigeria. It really, really makes me happy. You know, I’m really, really happy that I answered this call. And then with, you know, of course we’ve, we’ve, um, contacted people in the U S or the parts of the world as well.

And so that was how we set up Mo Rainbow. And then, I noticed there was a gap also in the education, and then children were rejected in schools. A lot of times,  when the mother drops her child at school, they be like: Oh, Oh, it’s okay…we are going to take care of the child, but guess what?

Once the mother turns her back, they don’t know what to do. I don’t blame them. They really don’t know what to do. They leave the child behind the class. They leave the child out of class. They exclude the child from activities because they just can’t  handle it. And that’s where special education comes in. And then I just knew that we needed to fill that gap real quickly because a lot of kids are out of school, and having a child with down syndrome disability out of school is like a double whammy.

So, and that was how we stepped in to fill in that gap and that, you know, that’s why we have Mo Rainbow today.

Dr. Adeola Oke: [00:20:09] Okay. So, Mo Rainbow also has a school for kids with special needs, right? So that’s what I’m getting? Oh, very good, very good. No, I’m just so wild by your story. I’m just like, well, I’m thankful to know that the people like you in Nigeria where we don’t have a lot of things like this. I have a cousin that also had…. not down syndrome, but something else. But you know, it’s just, it’s different. It’s- I’m sorry. I’m uh, sorry-

Okay. Yes, I’ll be fine. Anyway, so. We it is. I’m just really, I’m just really happy to see that you stepped up and you do not let go of that calling. Because it’s so important and it’s so much needed. People around the world,  I’m sure they’re so thankful to you. And I’m personally thankful that you took the call.

So, we’ve said a lot today- I’m crying. Sorry, say that again? I can’t hear you.

Tola Makinde: [00:21:02] I’m emotional right now. Really.

Dr. Adeola Oke: [00:21:06] Well, I’m sorry?

Tola Makinde: [00:21:07] I said I’m being so emotional, right now.

Dr. Adeola Oke: [00:21:11] Emotional. Got it. Got it. Yes. Um, yes. Yes. I didn’t know where that came from, but yes. Yes. But I’m thank- thankful. So what is one thing you want to make sure that people take away from today from this discussion? Like it’s so emotional, it’s so needed. It’s so important. What is one thing you want to make sure that people take away from this discussion today?

Tola Makinde: [00:21:32] So, um, sometimes it’s hard to know what to say when people are going through a hard time like this. It’s so hard to know what to say to them. You know, since words have, um, such power that can either tear you down, you know, build you up.

But honestly, I just want to tell them, um, never give up. You know, keep pushing. You never know what the child can become. But honestly, my daughter makes me so happy- and- *crying*

Sorry about that. So my daughter is doing so much, I never expected. It just changed my life. And I’ve been able to change many more children’s lives. I’m so happy. I just don’t want them to give up.

Dr. Adeola Oke: [00:22:25] Okay, so you heard it don’t give up, don’t give up there’s hope. There’s hope even- who knows what they’re going to be tomorrow. Like, because of people like you. So thank you. So how can you people get in touch with you and most importantly, support this awesome work you’re doing?

Tola Makinde: [00:22:45] Okay. Yeah, we have a website. We’re on Facebook. We’re on Instagram. The website is modownsyndrome.org. Facebook is Morainbow Down Syndrome Foundation. Then on Instagram is Morainbow_ downsyndrome. You see. What I want to say is that people need to like align with this vision. I really want people to think deeply.. If it’s something that think they want to change on around. I mean, why not?

Because, all my life, I have never been this inspired. And think about it. Think about it-that think about you as a person, without having any disability… think about how you really yearned for an opportunity and nobody listened to you. Nobody gave you a chance maybe when you were in primary school ,or you were in your tertiary education.

Or just think about the moments in your life- nobody gave you a chance and. Think about how you feel and you. I mean, and you know within your heart that you have those dreams, you know within yourself that you can do this and nobody ever give you a chance. Just think about it, think about how bad you’ll feel. And that is why every day I can never stop being inspired because I work with them: teenagers, babies, children.

You see so much that they really, really want to thrive. They want to live. They want to succeed. You know, I’ve seen how much and how far they can go. And that’s what, that’s what keeps me dreaming. That’s what keeps my, my, the fire burning in me.

You know, my daughter sings, she plays the piano. She can, um, she loves to dance ballet, and it’s just because I didn’t give up and I, I made sure that she, she, the environment was enabling- is enabling I mean, and I give her the opportunity to express herself.

So all what I’m trying to say is: people should kind of like, um, support us in any way they feel, you know. Maybe they can, because all what these people, these individuals need isis not to put them at the back burner. They just want to be at the front one or they want to like, they really yearn for- they, they, they want to do everything they can.

For the most part, I can even do some of the things they can do. I can’t play the piano, you know, I can’t dance ballet for the life of me. You know, we have some of them that are very artistic. We have some of them already, you know, varied into those vocational skill acquisition, and they’re doing so well. But people would not be able to see this because they need, they probably need a third eye.

They need to like empathize. And sometimes people are just out there, you know, thinking about themselves and…No the world is a diversified kind of life. There’s the neurodiversity diversity as well. You know? So you can’t- the world is a better place because of our different cultures, of our different beliefs, you know, different interests.

And so if everybody in the world was tall, it would be scary. If everybody were to be short, it looks scary. So, I mean, we must embrace diversity. See, that’s what I’m trying to say. So people should find a way to just connect to this vision. I don’t know what to say to people because I’m of the opinion that. Some people don’t like you to tell them how they want their money to be spent.

It is their money because I know the big brother, Nigeria, a lot of money goes in to. And I wonder because I am looking for a home, I need to build,- I don’t need to build, literally build, like at the moment, the project I’m trying- I even told her about those projects. You know, the project we need to actually, you know- um, ongoing project.

And that’s to tell you that this person we’re supporting need a place can go to learn their vocations. To learn skills, skills, I mean, building a vocational center for them, and we need people to buy into this. We need people to invest in this, in this project, you know, it’s going to make the world a better place for for everybody.

You know, they’re going to be included. They’re good. They’re going to feel accepted. They’re gonna feel that they belong. They’re going to add value to the world themselves because we know that they aremultitalented. So, you know, they are ready. They’re human beings that like us and they want to add value.

So we need to give them the opportunities. So people out there, if, if they really want to connect with us, it’s fine. They can reach out to me. You know, my email address is [email protected] mail.com.

Dr. Adeola Oke: [00:27:53] Thank you. Thank you so much. It was a pleasure having you on here today. Thank you so much. All right, guys, you all heard it. We need a place. We need to… diversity is important. It’s really important. So thank you. And I hope you do what you can do as little or as much as possible. Alrighty guys.

So please make sure you turn on your notification and subscribe to our channel. So you don’t miss an episode like an awesome one like this one. We’ll see you in the next one. Have an awesome week. Bye bye.

Ending: [00:28:23] Thank you for listening and sharing your precious time with us. If you enjoy the show, then follow us and subscribe on iTunes, YouTube, or any app that carries podcasts. Have an awesome week. Best wishes to see you thrive.