Special Needs Foundation - Tola Makinde

We speak to proprietress Tola Makinde. Founder of MDSF and has a 10-year-old daughter with DS. Her daughter Moyin is the voice of Sim Sim in the upcoming Pilot Ep for the animation Ugo and Sim Sim the series

Episode Transcript

(00:00):
So early intermation cuts across you know, you are willing to just give support
children born with you know, additionalneeds. So some of these needs are
basable someone not Hello and welcome toanother episode of Special Moms Africa, the

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podcast Real Talk on special needs parenting. I'm Tony Foy and I'm in the
studio with the Sensual Mama or baffeKemys. Yes, and today we are
back again once more on the topicof Down syndrome and early intervention. Taken

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from the definition in the children's bookGoogle and Simpson. What is Down syndrome.
Down syndrome is also called try Tomitwenty one. It is a condition
where a baby is born with anextra copy of chrimosome twenty one. Down
rome can affect how a child develops, and a common characteristic is upwards slanted
eyes nd S. S doc Orgsays early intervention is a systemic program of

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therapy, exercises, and activities designedto address developmental delays that may be experienced
by children with Down syndrome or otherdisabilities. Early intervention services are used with
the goal of enhancing the development ofinfants and toddness and helping families understand and
meet the needs of their children.The most common early intervention services for babies

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with Down syndrome are physical therapy,speech and language therapy, and occupational therapy.
So with that said, it's nowtime to meet our guest, but
hold on. Before that, we'vegot to take a quick break. I'm

(01:56):
Toye fa Luiki. If you're enjoyingthis episode of Special Moms Africa, brought
to you by Simon's Oasis and AfricaBusiness Radio, then why not listen to
our other podcast, represented storybooks andmore for African kids. Now, don't
forget to subscribe, put on yournotifications and share with loads of people out

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there. Thanks for listening. Welcomeback our dear listeners, And today our
guest is the wonderful Toler mckin dayand she is the founder and executive director
of More Rainbow Down Syndrome Foundation,the first early intervention center for babies with

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Down syndrome in Nigeria, and leadsher team in fulfilling itsmission of making each
day better than the last for affectedpersons and their families. She creates exciting
person centered education and therapeutic interventions,vocational and self advocacy programs for learners with
Down syndrome and additional support needs.Tola's birth to Mono Luis with Down syndrome

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changed the life of her entire family. Back in twenty eleven, deeply concerned
about Moyne's development, she gave upher eleven year high flying banking career.
Wow. She is an advocate forearly intervention, inclusion and education of persons
with intellectual disabilities in grassroot communities andthe general public in Nigeria and across the

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world. Welcome Tola. We areso privileged to have you here, so
let's dive right in. You aresuch a heavyweight in this field, so
we want to ask you in yourown words, what exactly is early intervention?
Wow? Thank you so much forhaving me, Ladies, our intervention.

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Yeah, and why is it soimportant, so important for children with
Down syndrome? Okay, yeah,an intervention Like you know, you've touched
on some types of what all interventionis. And then it's all bious that
when we say ellen intervention was sayingthat what we need to do early on
time, you know, like startearly. You know, it's just about

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everything earlier been done early. Andthen most importantly, because there is a
challenge that has been identified dollar needthat has been identified in at the birth
of a child with or without Downsyndrome. So ear intervention cut across.
You know you are wiling to justgive support to UM children born with UM,

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you know, additional needs. Sosome needs, some of these needs
are visible someone not so an intervention. Let me take you back to how
I got to know about this.You know, Yeah, I was exposed
to a child with downcing them thenthat in twenty seven and seven, and
I think so many us, butthe child then wasn'tn four years old,
and I noticed something about his intervention, being born with DOWNS. And that

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was seven years before I had mydaughter, and we had therapist comings,
pitch, therapace, you know,all people in the fields that you know
should support in and then you knowthey were coming back back to back,
you know, or trying to supporthim. And I was just watching everything
because at the end of the dayseven years after, when I had more,

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after I had surgery, I hadto take her back, same house,
same state, same plate, andthen at kid into our interventions,
and then it hit me that everythingI needed to do was just to begin
to stimulate her, support her.You know, I'm not saying, you
know, because you know, inthe hospital you would have heard reports like

(05:54):
from doctor saying she would be ableto do this, Yeah, able to
do that, she wouldn't walk alltime. You may not be able to
you know, and that there's theworst case scenarios because you can't really place
of those will be able to doall those you know, negative comments on
a child without trying. So anintervention gives to the opportunity to try first

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guilty, the opportunity to and andyou know, enhance the child's development,
you know, gives you the opportunityto give the child a chance, you
know, to try what people orwhoever a set or place the judgment on
the child or the child won't beable to. And then all interventions that's
from birth and that was the factthat you know, um, you know

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um for me, and from thatmeans that the deity is born a newborn
baby, and then you can seeall of the shortcomings and then there are
strategies you will about supported this childusing all intervention. Wow, so you
know there's something you said in thatearly intervention gives the child a chance and

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that is really all we are tryingto do when we talk about early intervention,
or when we talk about meeting achild's needs, is that these tools
and programs that are used in earlyintervention are all about giving that child the
best chance they have to reach theirfull potential, which will assist them which

(07:28):
will make their quality of life betterin the long term and as they get
older. So with that, youknow, you had your beautiful daughter Moi,
who is just a wonderful young lady, and you are going through this.
Thank God, you were exposed toa child before you even knew you

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were going to have a child withDown syndrome, which kind of puts you
an advantage, I think, becauseyou had a conceptualization that most people don't.
But when you got the news,even with that, how was it?
How was it when you received thediagnosis? I was heart broken.

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I tried every day. I wouldlock myself in the room with her and
just cry. And then I promisedmyself I'll not ever see my tears.
But then I would just cry andcry. But then one thing I knew
I did was I started early,so like I think about two months old.
I just you know, one ofmy parents called me from the years

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and I said, I took itto cry. But then if you have
too much tears in your eyes,you in able to see, you know
what to do, you know,So of course I'll cry, and then
I would clear my tears, andthen I started to swaddle as a baby.
And then I lent all of thetricks of all intervention, and all

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of those things I did repeatedly becauseall intervention needs the inforcements. It made
repetition. So from when she wastwo months old, I started engaging her.
You know, um, we we'redoing a lot of activities together,
all on the intervention, and therewas a purposeful of that. So it
was more intentional, like intentionally tryingto a little you know, some of

(09:18):
the text pointing about things we dowith babies, you know, but then
it's called play. But this this, in this scenario, like in this
context, we knew that we're notjust playing. We're trying to help the
baby develop. You know, Um, you know how to move our eyes,
you know, because definitely with Downsyndrome, there's so many medical um

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conditions co existing with having downcing themand then you have to look at for
all of that as well, justto rule them out or just to help
the child to outgrow some of them, and then the Lowton muzzles. So
we were doing a lot of swaddlingas a baby, and you know,
an engineer, it was very hot. I mean it's really very hot in
engineer. But then we're still swaddleand then um, yeah, you know,

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just to get the muzzles walking.Kind of like you know, sometimes
you don't you don't even want tobelieve in what you're doing. They're more
like activities. But and then they'relike, you know, they're like programs
that you have continue to do withthe child. And then we started doing
all of that, and then ofcourse I was doing a lot of facial
all around or exercises. We're doinga lot with water and there's some of

(10:26):
those things. I was just tryingmy hands on all of those things,
you know, at home by myself, locked up in the room, depressed.
You know, some days I wouldn'teven eat. But then I wanted
my child to you know, conquerall of those challenges. You know,
there were days I wish that theslanted eyes, because a pretty eyes,
almond shipped eyes, would just goaway. There were days I was even

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praying that God by time I wakeup, you know, I believe so
much in you God, just changea face, let her not look like
a child. That I was Downsyndrome, and my prayers were not answered,
you know. Instead, I camedown with a horrible blood pressure.
I was how I was snating,I was sick. I think I was
just afraid of what people would say. Yeah, you know, and of

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course people commented, people started talking. When I started taking it out,
people said a lot of things.You instand so but then we're able to
move past that. And then forme, I had to take to get
more quality stay, you know,support, and then I learned so you
know, how to care for ababy with Down syndrome, taking her back

(11:35):
to the US when she clapped oneafter I had surgery. So I met
with professionals and then I didn't evenknow what I was doing. The baby
that I was joy I was videoingthem, I was recording all the sessions.
I was asking questions, were explainingstuff to me, you know,
and the way some shoe braids theygave that she was she was just crawling

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yet not walking. But they gaveus some therapy shoes idea like some insults,
some air force, all of thosestuff. You know. I came
back with a knee brace, youknow, a brace that she would wear
from a knee to do you knowthat would take her from the back of
her knee down to that would comeout the soul of her feet. And
then I would insert that into asneakers and wear for every day. And

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then I came back with him andwhat you call the eap Elper. And
when I came back, people werelooking like, strangely, what has gone
wrong? Why are you taking theshow with all of this eap elper doing
this the other time, you know, when I was swaddling and doing and
different stuff with her. My momtoo, was so consensaying she doesn't have
done Jesus, like, maybe shehas done. You know, she'll be

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fine. You know what I wam I trying to say. I accepted
it on It wasn't easy. I'mnot saying it's gonna be easy. But
then what I try to do wasjust move forward from that position, because
it felt like I was in astagnant position, like a true from book.
Yes, my career ended, youknow, came to a whole like
even when I was going to bepromoted as a branch operations manager, everything

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just stopped for me, like everythingjust did really stopped for me. So
I was so devastated. I wasso frustrated. I was in fact,
I can't even I think God hasactually used more and bow to kind of
you know, putting on my healinggeneral getting you know, I really honestly
I'm grateful for this opportunity because shehas now become and that that's what I

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taught parents, that this child willalways come back to be, you know,
a joy, your joy to you, irrespectable, what the child can
do, irrespectable, who what diagnosisthe child has. And then I think
this is really helping as well,you know, to be able to be
business. So I came back sopassionate about babies and I sid see a

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lot of them around suddenly, right, yes, you want a record.
Yeah, that means I wasn't observantbecause I wasn't. Always't my business so
that's my business, you know,was like a like a mind your business.
Then I was minding my business.But now my business is now everybody's
business. Everybody's business is now mybusiness. And I think that's how the

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world should be, like, youknow, look out for each other and
connect with people that are going throughor you'll be able to like support them
better because people are going through emotionaltrauma. You know, I wasn't live
for myself. I'm still on deepin medication. You know, for the
past eleven years has not been easy. But we are we are here,

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and I'm just so grateful for yousharing that because I think our listeners,
we ourselves even can identify with everythingyou said. And even in that state
that you were, you still said, I'm still going to focus on this
child. I'm not going to dwellon my anger, resentment, whatever your
depression. Yes I have that,but I still need to. You still

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had the wherewithal to still put yourmind to help your child and then go
beyond that and start a foundation tohelp others. Taking what you have learned
and continue to learn, because Iknow you never satisfied you and you continue
to learn and you'll continue to shareso much so listeners that she created something

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that is just awesome. The mostearly intervention kits. Can you quickly just
tell us exactly what your kids areabout where they can be found, because
you have made it so easy nowfor parents to get the tools and be
able to utilize them at home exactlytime, so I was thinking, and

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you know, when the call startedcoming in or we have a new baby
with them syndrome, and the callswe're coming in from different parts of Nigeria,
you know, And I was happythat people can already embrace it or
talk about it because people wouldn't wantto talk about them the first three years,
trust me, and the child wouldjust and they will keep living in
de out. For me, Icannot say it was okay for me,

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like I lived in denial, butit was for a short time, you
know, and the shortter the betteryou're live in denial so that you can
begin to launch forward, like startthe journey. It looks like a very
long, covey, difficult journey,but then you must start with one step.
And then I realized that so manythings that helped my daughter. There

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was some knickknacks stuff I used tobuy when I traveled. Then my husband
would just be abbing me, what'sall this? Man plants all this?
I'm like this this a makeshift.Stop, don't worry. I can use
this as this to build this.You know, it would just be like
you know, for me, forme, I know where I'm coming from,
like I've just stopped walking like asix bigo beautiful had a very wonderful

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salary in twenty eleven, imagine,and I had never gone back to work.
So this manchi know'll just come andstop me. So I'll just be
buying all the stuff and buy,you know, And then I would be
using it even when I came backthen and I had got her if it's
a therapist, I used to comehome, I'll buy books, I'll buy
different stop. But she would belike, I've most seen this time before.
We don't have this. And ourteacher again, how he said we

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should use it, you know,speech therapists to come, I will show
up books. Well this is allcourtown syndrome. Oh they have a different
profile. Oh blah blah blah blahblah blah. I would just look like
that, like that, And thenone day I was trying to all the
schools. I'm like, how arewe going to reach this? VIVI second
and then I used to do allvissertations. Remember, I will go the
coming worn show here, I willgo. I cannot go to fifty homes.

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And I was already going to threehomes every week then back in twenty
fourteen, so I think towards twentynineteen, I said, come on,
we should be able to do something. But the people like empower them parents
as long as you can accept thatthis is what my child is going through,
and then there's something if the kidsis for any child that yes,

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it can be for new typical children, all children, two children. Yes,
it worked for early education, earliest, with development early you know,
tactile development, all around the differentpage. If it's a baby, all
you need to do just be creativearound the kids. And I loved what
you did the kids to remember whenum you usually you supported and bot two

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serves and gifted it and I thinkyou gifted it to the family and cardinal
want was varying, and then itcame back with amazing feedbacks. And then
you know there's a WhatsApp group childrenwith parents of children without gentlemen, and
I know that a lot of peoplewould say it doesn't matter or and then
I know, I know the challengeswith the kids, the challenges with the
kitters. That is expensive for everybodyto be able to afford. And then

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we're going to do something about thatvery soon. But then the kids has
different things that can help to improveyour child find motor skills, all our
motor skills, UM, tactile development, you know, UM, sent relations,
identification of numbers, language, everyyes, and then people think that

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our children with unswer will not beable to learn that. It is also
trying to change their mindset that,oh, if if any child can use
the skate, or if children withintellectual disabiligence can actually make his off the
skate, there any child can learn. You know. It's just trying to
change that notion that, okay,our children perception that our children cannot go
to school or our children may notmay not be able to get an education.

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I mean I'll start education. Yousaid it by learning in the garden,
right once or three colors? Thenyou sing and everything I want working
with the kids. You can alsosing about colors, do matching. There's
so many things you know about theskatesme and I love trying yes, and

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I'm like you in that anything Ican see, I'm like, oh,
I can use it, I canuse this, I can use that.
So it's also kind of putting thatmindset into parents to say, you don't
have to go and purchase the world. You may have a lot of the
add in fact, every household.You have some things already in your house
that you can convert and use.It's just about to open your mind to

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it and understanding you can use somany things to just to help your child.
But we are conscious of the time, Toller. So we are at
the point of the program where we'regonna put you on the spot and it's

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called honest Truth, And in oneminute we ask you to please share with
us something you thought of doing thejourney, but you never said out loud,
And don't let a baffe you canbe scare you something I thought of
doing the journey and you never saidIt's not negative. It was just a

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fear I've been saying. Right,I'm like, God, don't let this
child die. She looks like she'sabout to die, but don't let her
die, please. I never saidit out. This was during the heart
more he had was having the heartsurgery time or previously surday time when she
had sleep. She had a terribleyes and she went into surgery and the

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doctors came out forty five minutes aftersaying they after about the surgery. They
couldn't go on with the surgery.That wasn't twenty eighteen and then she they
brewed it out from the theater.She was looking like she was going like,
I'm like, oh, do lether die. I never said it
that because it like you don't don'tyou have faith? You know? I
probably need that. My daughter hasdone syndrome and someone had told me before

(21:41):
that don't I have faith? Look, I have faith that she will be
healed and like she's not sick,like I think I have faith, you
know. And then the third timeshe went into the theater was in South
Africa twenty nineteen. I don't knowwhy. I was a bit actress that.
Okay, they weren't shake line thisstuff, but I was wrong.

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I was wrong, you know.But I just think on that, you
know, she was able to takeit all in like and she keeps giving
me that strength if I'm not evenstrong compared to my daughter. No,
I guess I guess what I getwhat Toller is saying, because I do
the same things right in that I'mjust feeling defeated. But I'm like,

(22:22):
wait, Simoley is still going,who how can I be defeated? Let
me stand off? I respect myself, do you know? No? Because
it's in fact it's a children thatgive us a strength. So this adenoids
thing deals with her seriously. Andyou know what that does it which is
the level of oxygen that carries bloodto the brain and then tells the brain

(22:44):
to wake up. So we're dealingwith a CD, dealing with night waits,
dealing with slip up here, dealingwith some well well maybe behaving our
challenges as well, you know.And I think the admaids have gone back
and there's a sad part. Yeah, she's just you know, I can't
want to explain or express I don'teven know I'll know which words to qualify

(23:08):
her right now because I'm laughing becauseI can see her in my head.
That's why I'm laughing. Yes,she's amazing, winning, like she's a
one winning and winning and yeah she'sfunny winning. Maybe I don't know what
I'm the one that is confused.Now, don't be confused. She is

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a winner, she is blessed,and she is special. And with that,
we are out of time. Thankyou so much TLA for the privilege
of sharing your experience with us.Can you let our listeners know where to
find you on social media? OnInstagram? My name is talk Too Too.
Is the digit to talk to Tolamckin day and Facebook and Toler mckin

(23:56):
day. Then I think the organizationsmore invote on the school down syndrome and
on Instagram and that's Instagram right.And for the kids, we have more
early intervention kids on Instagram. MoEarly Intervention kids on Instagram, please follow.
Those kids are genius. So thankyou once again, thank you to

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my co host today, the SensualMama or Buffet Kemmy Luther. I have
been your host to and yes,let me not forget and we'll catch you
next time on another episode of ourpodcast, Special Mom's Africa Real Talk on
special needs parenting. Till then byebye. For sponsorship inquiries, you can

(24:57):
dm us at sim Momone's Oasis onsocial media or send an email to hello
at Simone's dash oasis dot com