The Daddy Edition

We’ve heard a lot about mums so far in the series, but what about the guys? Welcome to the “Daddy Edition”, our juicy bonus episode where we explore what it’s really like for dads going through the special needs parenting journey.
Recorded live at Africa NXT 2023, join Paul Okeugo, Obinna Okerekeocha, Remi Olutimayin and Tonye Faloughi-Ekezie as they delve into the topic from the male perspective.
In part 1 we meet the dads and find out what their special needs parenting journey has been like.

Episode Transcript

(00:05):
Hello everybody, and welcome to SpecialMom's Africa, the podcast Real Talk on
special needs parenting. My name isToya Fui and I'm going to be your
host today on today's episode. Andyou might be wondering what's going on because

(00:25):
there's a bunch of dudes up herewith me. That's because today we're doing
the daddy edition, so we're switchingthings up a bit. Our focus will
be on dad's and their special needsparenting journey. We're looking at why there
are so few male voices in theconversation. It just has piqued my interest.

(00:53):
So let's get stuck in and getto know my co hosts today.
Who am I going to put ona spot? Barish? I think I'm
going to go from the far end, So we're going to meet Obina Kota.
Obina, can you tell us alittle about who you are, what
you do, and about your child'sdiagnosis? All right, so thanks to

(01:15):
everyone. My name is open ACaricotia and well, I mean lots of
things, but let me just saythat an artist, filmmaker, and music
composer and creative director and I've prettymuch been working in the creative space for
about twenty years now. So atthe moment, I've worked with money Point
as a director of contempt, Soyeah, I think to answer the question,

(01:40):
when he was born, you know, it was something that was very
apparent, you know, until abouta couple of months we started to notice
that he wasn't developing well and heseemed to have libod breathing and at that
point we said, okay, weneed to take him to you know,
have a second look and see what'shappening. And it took that. Persons
took a while just to get theappointment, you know, to sort of

(02:05):
figure out what was going on.And when we eventually did, they said,
oh, okay, he has ahole in his heart and he needs
to get surgery as soon as possible. So that sort of rocked our boats.
You know, this is like brilliant. Some months after he was born
almost a year, you know,so we um of course there to make
plans. Thankfully, the country wasnot the way it was at the time,

(02:28):
so it was quickly We're able toquickly put funds together, you know,
change effects, and we jetted outto India and the Prosuduo lasted for
he did it, so we landedon it like a Tuesday. By Wednesday
he was wilding to the theater andwas done. So it took about fourteen
days of recovery, and within thattime the doctor now said, okay,

(02:49):
we've done. We've done it,sorted out the holes and all that,
but we need to let you knowthat he has a condition. And that's
where we sort of figured out wherewe're told firsthand that you know he you
know, he had Down syndromes.So you you had the diagnosis of the
heart first exactly before the exactly butdid they know about the Down syndrome and

(03:09):
just didn't tell you because Down syndromeis it presents. Yeah, so it
wasn't really visible, you know whenhe was born, because it's his sort
of mosaic is not like the reallyobvious one where you see the kid or
you you go clearly you know they'resetting abnormalities or things that are not in
place. But you know, forthis one, he wasn't chewing anything.

(03:30):
But when he started to show this, you know, you know, delete
developments and we said it's something thatit's not quite right. I mean to
check, you know, And sothat process would revealed the fact that you
know, this is the real situationof things. So yeah, so we're
still getting to know you a littlebit. Yeah, how you know,

(03:51):
thinking about who you are as aas a father, right, and he's
your first child, yes, sothis was your first your journey into parents
exactly exactly how did that affect youas a man? So, first of
all, you know, I knowthat because I have a mother who is
very you know she's because it's workedin public health, so she's very you
know, she picks up these things, veries. You know, she can

(04:12):
say okay, so just by lookingor by it okay, so you know
she would say check, check checkcheck. So was before obviously we went
to do the hats procedure and allthat, but I was like, no,
nothing can be wrong with him.No, there can be any insinuations
of anything, Like, no,nothing can be wrong. So I was
I wouldn't say denial, but Iwas so sure that nothing of the sort

(04:34):
was wrong with him. But whenwe eventually got it, it was a
big blue because the last thing youexpect, because you know, first child,
the first song, first child,you know, there's always that.
You know, this is the childthat brings all of all the great things
and all of it you know especiallyand I'm from the eastern part of the
country, so you know, it'sa big thing, you know, Now,

(04:55):
how do you reconcile that with thisnew information? I think what really
struck me beyond even me the verymoment that the news was broken to us,
and it was done in such acareless, wanton, insensitive manner.
The lady goes, oh, youknow, he hasn't gul in the hats,
you know, and my wife justbroke down, you know, like
complete, so everywhere in the hallwayof this hospital and crying and holding each

(05:17):
other. You know. So it'squite of a you know, a very
very serious moment. Something I Icanna forget, something that makes quite an
impression on me. So so yeah, so I was like, okay,
you know, have to forget myselfnow and be there for my family,
be fair for my wife. Ijust see this true now. So so
I had no time to think aboutmyself, let me put it that way.
I had to be there to bestrong and just you know, see

(05:39):
everybody through this dark time. Andjust so yeah, so if you're listening,
you can understand that, and youcan hear it's a difficult journey and
it's hard to reconcile with who you'remeant to be as a man, right,
absolutely what the culture says you're meantto be. So we're going to

(06:00):
meet another host who is trying todo that as if I'm not going to
pick him, but I'm going topick him. Paul. Okay, please
introduce yourself, who you are,what you do, and tell us something
about your child who has a diagnosis. Yeah, my name is Paul.
I am what you call a salesguy. I think that's the best way

(06:21):
to describe myself because I sell manythings. You know, everyone lives best
telling something, So I sell musicthrough my company, Chocolate City. I've
sold everything from phones to cigarettes,working for many multinationals, you know,
Microsoft, Nokia, travel around sellinga lot, which is important because I've

(06:46):
never been in one place. Ithink this is the first time in my
life where I'm really steady staying inone place. I mean usually I was
always on the road doing one thingor the other. So that's pretty much
the best. Just cryption my son, Ziza's he's fourteen now and he has
autism. He's on the spectrum.Man. I think for us we realized

(07:12):
quite early, and I think alsobecause I wasn't at home a lot.
I would travel for work and myfamily would be at home. And he's
my second second child, but firstfirst son, so I totally get the
whole ebol thing. You know,we I mean, we know how that
is. So my second child,my first son. So because I would
be away, I think and comehome, I would notice things a little

(07:34):
more because like then, when youcome home and your son sees you,
he runs towards you, and Imean, and there was none of that
behavior was quite weird for me.At first we thought he was deaf because
I would call him, he wouldn'trespond, and then he'd be back in
me, and then you know,I wouldn't respond. So I would show
that it was deafness issue that wehad. And so immediately, of course,

(07:58):
I threw myself into like most mendo, threw myself into solution mode,
which is, you know, Ithrew him out to a death and
whatever clinic did a test that thiskid is not death, I should do
some thing that I find silly now, like so I would come behind him
with two pans, Yes I did, my wife, is he I should
tell you? You know, he'llbe watching watching our common stand behind him

(08:22):
and then I'll bang the pans togetherto see if you'll react. But he
never did, which was quite scary. Right shout his name. So you
know, my wife said, look, poor, there's something else going on.
I think it was about three yearsold, then two or three years
old, I'm not sure of thedate. So, and that's how we
got him to the Emory. Ofcourse, before we went to Emory in
Atlanta, we sort of knew becauseInternet, you know, we were researching

(08:46):
and this is autism. He looked, he had all the symptoms, you
know, working on the toes,you know, steaming things like that.
So we said, look, thisis probably autism, but just and so
we got a proper diagnosis from thedoctors at Emory, which is autism center
in Atlanta. I think, youknow, we were lucky to be able
to have the means to spend sometime there because as you know, a
lot of families you know, inAfrica kind afford to do that because quite

(09:09):
expensive, you know. But yeah, so we got that diagnosis and we've
been managing ever since. He's fourteenyears old now, amazing young man.
He's an artist, has had lotsof exhibitions in Legos sold a lot of
paintings. I mean, he makeshis own money now, which is great
and a big relief for me.But how did that make me feel as
a man. This is like avery complicated question because first of all is

(09:33):
that question of you know, howis a man supposed to feel in the
first place, Like you know,these days, people don't know what the
man is anymore anyway, but asa whole another But for me, it
was like I will start with thecultural side, just like you were saying,
there are many things that one hadplanned for their first son as a
man, Like many plans I hadin my head that I would be able

(09:54):
to do with my boy, liketeaching how to drive and how to chase
girls, and you know, justgenerally taking for soccer. And you know,
you know, when you have ason, he's like almost like your
best friend, right, especially whenhe's much younger, when he's younger until
it grows up and goes away.So the first thing when I realized that
I couldn't have that, I mean, of course, there was a heartbreak,

(10:18):
Like I mean, I went througha lot of depression over this thing
for quite a while. It tookme a while to to to accept accept
it. I had these you notknow, boy sort of looking at me.
But I had these fits of youknow, crying. You know,

(10:39):
I would lock my room and Iwouldn't let my other because I had a
daughter, my older child is asa girl, and I didn't want her
to see me in despair. Mywife as well, because that's not a
good look. That's what it isyou have to a man. Now,
So like I would have this timewhen I would lock myself in my room
and just cry for hours and youknow, pray and I'm like, you

(11:00):
know, what the hell is thisnow? And especially because my son was
nonverbal for quite a while. Imean now he has a few words,
one hundred words or so, butbefore, like he wouldn't say anything,
Like I hadn't heard him say daddyfor the first I would say, seven
years of his life, like,you know, he didn't say a word.
And so of course the first timehe learned how to say daddy again

(11:22):
was quite emotional for me. Youknow, it was like a big sort
of like achievement for us. Soculturally, it was quite difficult because of
where we come from, the expectationsI think as a man to be honest,
financially, because like it's a wholedifferent thing raising a child who has
special needs in Nigeria, right,the costs are doubled, sometimes tripled for

(11:48):
everything. I mean, for example, a kid on autism, the diet
alone, we couldn't feed him likeeveryday food. We had to go on
this gluten free stuff, casting freeeverything free, free, free, and
you know, Nagera didn't had soat the time we would. We have
to ship in food from the UK, you know, because they have really
like free from you know, becausethen if you can't if you can't eat

(12:09):
gluten and you can't eat you know, Casino calves, he's dead now in
Nigeria because Nigeria we only have calves, right, so we had to know
this. There's a lot of money. And then for the school it was
also difficult because you have to paynot only the school fees, but then
you have to pay for a shadow. We had three therapists at some time
coming through the house and when hewanted to do us, we had to

(12:30):
have an our teacher. So there'sa lot of staff that I involved with
just raising this one child. Soand that's quite a lot from a financial
point of view, and I thinkfor me, the biggest impact I would
say as a father was how itbegan to affect my daughter, who was
who is bolder and because they're notvery um fine age. I think it's

(12:54):
just about a year and some Iwas very close to my daughter, like
when she was young with were likeinseparable and we had this bond because when
my son came as normal, alot of attention went to the boy because
of course not his fault, becausehe needs it. But then at some
point you forget that another child,Oh you're not spending as much time as

(13:16):
so my dad that she had thatperiod where she felt, I know,
for a child and we don't understandthat this kid had also same so it's
not you. So she had thatperiod where she felt, you know,
that we were a bit distant,I think, but luckily for us,
she expressed those we were on awe were on a thing, dity bank,
and we were on that with herand she was asked the question and

(13:37):
we didn't even know this, Likeshe was asked the question, what does
it feel like to be the siblingof an artistic person? And my daughter
is quite a she can't talk andshe's like, you know, she knows
how to talk, and she wasvery articulately saying, I felt abandoned.
I've felt like, you know,you guys didn't have time for me.
I felt like all your efforts goesinto zies. And that was really heartbreaking

(14:01):
for me, Like, you know, how do we fix that? You
know, because then she was alreadyMy fear was that feeling was already set,
you know, and how do wechange We changed that. So,
I mean, there's a lot morethat I could say, but I think
those three culturally, financially, andeven how it impacted my other children,
you know, even I'll share something. Even we have a third child now

(14:24):
who is eight years right, Sowe had another child, and the motivation
was we didn't want this to bea last child. You know, it's
so like we had a plan twokids and we're done. But then we
said, you know what, itdoesn't We can't have him be a last
child because we want to put himsandwiching between two people who will love him

(14:45):
by force. Because you know thething is when you go, which you
eventually will, you cannot trust anyoneto take care of your It has to
be blood. So we said,let's put in between blood so that you
know there's a lot of impact thatyou know one can share. But yeah,
these are the the key ones forme. Really, you've packaged so
many things that we're actually going totalk about. But first, our last

(15:09):
co host we're going to introduce youto is Remy or Luti May and he's
a little different because he is theone with a diagnosis. He has a
diagnosis of autism spectrum DISORDERSD And sowe'd like to know who you are,
Amy, and a little bit aboutyour life, your family, your children,

(15:33):
and how you navigate life with yourdiagnosis. And frankly, in my
opinion, you're in selling it lifewith this diagnosis. So please introduce yourself,
let us know who you are.All right. So my name is
Ramo Lutmai. I'm a voice directorfor animation. I've been a voice actor
writer. I'm produced for about twentyyears. I'm so sorry. As Paul

(15:58):
was talking, there's a lot thatsuddenly just made sense. Remember my dad,
I remember there would betimes he wouldbe in a very dark mood.
I was my fifth from King's Collegeand he he just express that of nowhere
that you know, it's something happensto me. I don't know what will
happened to this family. I don'tknow. I don't think you can carry

(16:22):
it as an I didn't even knowwhere the question came up. I didn't.
It was like as like they're justjust saw it the way I've pictured
it or way have framed it inmy head. And every time those thoughts
come to mind is that sons judgetheir fathers until they understand them. God,
so you just be like, sorry, can you say that again?

(16:42):
Because that was just a knowledge fromso sons judge their fathers until they understand
them. Yeah. So the thingis, I don't need to be clear
about something. I'm yet to geta diagnosis because all right, and I'm

(17:04):
going to be forty five this month, thank you, And most of my
attempts have been as in to geta diagnosis, I have had a cultural
backlash, so as please tell usabout that cultural backlash. All right.

(17:25):
The last time I tried to geton the roads to a diagnosis, I
was giving it form that offended me. Is that here? Oh yeah,
yeah, nig yes, it offendedme. And the thing is I had
already prepared myself that you know,I'm not going to put the mask down
I'm just going to whatever it isthey ask of me and ima just because

(17:47):
the mask is heavy. Right,So in the masking, you're putting on
this culturally acceptable be able to navigatethe day to day life, so you
don't have to deal with everybody's like, I don't have to. I just
have to swallow my disagreements. It'sjust like a massive things. But I
don't have to swallow my disagreements.You get and put on the face of

(18:10):
an ally although everything is dune.Then I can go home my recover.
You know. So you filed outthe form which offended you. Yeah,
as in we're asking things that Ihad cycled through when I was fourteen.
As in I promised myself I wouldnever put myself in a position in a

(18:32):
game, as like, the vulnerabilityis scary because people will eat you.
I'd seen them, I'd seen them. I'd been eating myself. Oh yes,
it was just to King's College.We're playing a game and I just
came into King's College form too,and I thought, okay, I was

(18:52):
joining with this guys. Let mejoining bond with them. And I didn't
know. I didn't know I wasbeing set up. I didn't know how
it's being set up. So essentiallythe game was a case of either if
someone put his hand out, yourather touch the same side of the hand
if their hand is if the backis up, you put the back there
if they What they didn't tell meis that anybody can switch. So someone

(19:21):
just switched and I just felt handsbeating my back like a new roger was
like a rain, and that broughtout a beast in me, and I'd
had to pull it back because Iremember I roared and that everybody jumped back,
as if you know boys, teenagers, it takes something for them to

(19:41):
jump back, especially if they're doingmischief. I roared and I stood up,
and they jumped back, and Ijust walked out of the class and
I told myself, you know what, there are things that I will never
subject myself to us and I willnever I'll never do that again. So
you've hit on something really really interesting, which is that aspect of vulnerability now

(20:04):
culturally here in the culture that we'reat, vulnerability is associated with femininity.
My name is toy I Flog andyou have been listening to Special Moms Africa.

(20:27):
The podcast will talk on special needsparenting and you've been listening to the
Daddy Edition, which is our bonusepisode, and yes there's still more,
so keep listening on for part two. You can follow us at Simon's Oasis
and at Special Moms Africa. Onsocial media, do not forget to like,

(20:51):
subscribe and share with all your friends. Till next time, Bye bye