Social Media And The Special Needs Parenting Journey Part 1

Recorded at Africa Nxt Social Media Week 2022 Landmark Centre Lagos, the hosts share their views on how social media can help and hinder the special needs parenting journey.

Episode Transcript

(00:00):
So I have to just say thatbeing a special needs mom for me showed
me how God wants us to lovemy daughter taught me how to love with
my whole heart. Hello, ingood afternoon, Hello, and welcome to
Special Mom's Africa the Podcast, andthis is real talk on special needs parenting.

(00:26):
My name is MC Fatimolu Taiwo andI'm your lead host on today's episode.
I also have here with me somevery amazing ladies. I have to
say, if you're just joining usfor the first time. Over to my
extreme left we have Bucola dy Boyhere and to my immediate left we have

(00:48):
Tonya for Lugia that's right. Andto my right here is the very beautiful,
essensual of Bafi. Hi. Hello, how are you okay? And
um, just a quick note toour regular listeners. We may sound a

(01:10):
little bit different today because we arecoming from the African Next Podcast stage,
which we're very honored to be on. But we'll speak more on that a
little bit later. Now, justlet's get started. First of all,
we're just gonna get to know ourhosts a little bit more. So they'll
introduce themselves and they will tell youa little bit not too much, just

(01:32):
a little bit, because we canall go on about their stories. Okay,
so let's start off with Bocola.I thank you very much, well
the listeners. Once again. Myname is Boola and I'm the founder of
Darium Especialist Mom Initiative on the pfour thirteen Foundation. I started this foundation,

(01:56):
you know, as a fall outof being a mom with a beautiful
girl living with Cereber Paul Say nineyears ago. My world as I knew
it changed and I had to navigateespecial needs journey in Nigeria, Africa.
And if you're aware about the disabilitysector or community in Africa, in Nigeria,

(02:20):
you know, it's like walking ina maze blindfolded. That's the way
I always say it. But havingbeen able to successfully you know, even
though it wasn't a walk in thepath to find my own path, to
find my own place, you know, taking care of my daughter and being
able to annext her talent and rightnow she's striving. I'm working at you

(02:46):
know, encouraging other moms who areworking this part with me to understand that
in spite of having challenges, inspite of being a parent of a child
with especial needs. In spite ofliving with your fears the daily basis,
as in facing your fears on thedaily basis, you can still leave a
successful life, You can still leavea fulfilled life. And because of that,

(03:09):
I have partnered with this amazing momsto share our stories to encourage not
just other moms like us, butto tell the world that our children exist
and they also have the right tobe here. Thank you, thank you.
That was lovely, all right,Tony over to you. Yeah,

(03:30):
yeah, So my name is mand my special needs journey began with the
birth of my second child, msimone. Um. She has an older
brother, Ugo and h It didn'thappen at birth. Actually she got diagnosed

(03:52):
with Down syndrome at four and ahalf months and um she was diagnosed here.
It was missed in the US.It was in the UK because she
wasn't obviously downsy Even today she's notso obvious that she has Down syndrome.
But at four and a half months, nevertheless, we got the diagnosis and

(04:14):
it was hard, but it wasn'treally the diagnosis that was the hardest.
The hardest diagnosis was for us theheart failure diagnosis. So forty to sixty
of babies with Down syndrome have someHD congenital heart defects, and usually it's
minor can be fixed with some medicine. Some need minor surgery, but us

(04:42):
was the worst it could possibly be, and she was given six six months
to live, and that kind ofreally changed our lives. We had to
kind of abandon everything, leave everything, and get her to the United States
to have life saving surgery. Shedidn't recover as expected, and it took
almost two and a half years forher to recover, but she recovered and
came out amazingly strong. She's ourAgiru fine Gail. Yes, she is

(05:09):
literally on oxymoron, a fine Gail, feminine woman and abirure at the same
time. But my children are literallyjust like I'm sure every mom on this
platform stay shared with me, arethe inspiration and because of them, I
started a book series called Ugo andSimsim, which is also an animation.

(05:30):
We have a YouTube page and thenso first of its kind worldwide to feature
a black main character with Down syndrome, And we also have a platform called
Simone's Oasis where we say we're empoweringthe African child through entertainment. So through
the special needs journey, I've actuallybeen able to find my voice. I'm
actually be able to speak in frontof people. And our message with Special

(05:53):
Mom's Africa's to really just say,even if you don't have a special needs
child, those lemons that life givesyou, actually those things that will change
your life for the better if youdon't turn away from them, and if
you face them, you will beamazed at the work God will do in
your life and change you and putyou on a path that you are really

(06:16):
meant to be on. Wow,wows amazing deep. I know, very
deep. All right. My nameis mc fashion Movie Taio and I have
two boys, and my first childhas Down syndrome, and his name is
Alex. And if he was here, he's very lively. Oh my goodness,
so he's very strong. Let meput it that way. When Alex

(06:41):
was born, everything seemed to beOkay, I'm sorry every time, I'm
very emotional. I'm very sorry.I'm very very emotional. Anyway, let
me just try and push through.So anyway, a week into you know,
just going into the hospital doing yourone week check up to check up.
Okay, you know what vaccinations dowe need where do we go or

(07:01):
what do we do? The doctorstarts, you know, is picking him
up and putting him down and pickinghim up and putting him down, and
I'm like, what's wrong? Isanything the matter? And he says to
me, he goes, I thinkhe might have down syndrome. So that
sort of news comes at you andyou're just like, and I remember when
I was in the hospital, Iwas just smiling the whole time, and
my mom was sitting next to me, and so it was one of those

(07:27):
things where the doctor was like,because usually down syndrome babies, they have
very low tone with their muscles.They're not able to control their muscles.
My boy was, you know,doing literally bicept curls and everything and stuff
like that. But so the doctorwas very confused, and I had to
go and get a second opinion fromanother doctor who basically here's what I did.

(07:47):
I went into the doctor's office andthey did his vitals because I said,
I'm coming to get this was like, maybe he's six weeks older this
period of time, and he's comingto get his six week vaccinate vaccination.
So when, of course the nursedoes his vitals and then when the doctor
comes in. I'm holding Alex,but Alex is facing me. She looks

(08:07):
through everything on his chart and shegoes, oh, everything here seems great.
Everything's fine. You know, he'sadding weight the way he's supposed to.
And then she goes hand him tome, and I turned him around
and I hand him to her,and she's like, did your doctor say
anything to you? And I waslike like what? Did your doctor say
anything to you? And I waslike like what. So we kept going
back and forth did your doctor sayanything to you? And I kept saying

(08:28):
like what, because I wanted itto come from her mouth. In my
mind, I thought to myself,I'm going to find a cure. There's
something that we need to be ableto do that sort of thing. So
we did that for a little bit. Anyway, she turned around she said
to me, she goes, yourson has down syndrome. We need to
do this test, this tess,this test, to which I immediately I

(08:50):
almost sort of like bolted out tothem and I was like no, I
didn't want to come to terms withit. It took me a while,
let's say about i'd say about fiveweeks or so to come to terms with
it. To be in denial.I didn't discuss it with my husband.
It was a secret. It wasa secret between my mom and I.
Oh, I'm so sorry, andit took me a while. I came

(09:13):
to terms with it. But thegreat thing now is that he's thriving.
He's very very strong. Um So. One of the reasons why I'm on
this panel is because of this amazingwoman here, Antonia, And she's very
she's very forceful. She would forceyou to do things really don't want to.
She'll just make you. That's yourbusiness, basically, um so.

(09:37):
And I'm very thankful to you forthat, because this is the way I
get what I'm talking about my son. It is not something to be ashamed
of, is It's not something toyou know, cower and be scared about
about discussing it. It is somethingto say, I have a child who
has special needs, and why amI crying? I don't even understand.
Um I have a child who hasspecial needs and you come and take really

(10:01):
Okay, So I have a childwho has special needs. But it is
a blessing, right, Blessings comein different disguises. He has helped me
to be stronger, He's helped meto be more patient. He has helped
me to believe in the impossible,because when you first hear about a child
with his special needs diagnosis, yeah, with his special needs diagnosis, you

(10:24):
believe that a lot of things aren'tpossible. But he has shown me how
many things are possible, how tocontinue to just strive through life and to
just be an advocate, which iswhat I am now for the special needs
community and for my son. Ofcourse, before a buffer you can be
comes in because I'm skeptical on you. Before another person starts crying. Girls

(10:48):
who are not used to this podcast, let me just put this disclaimer.
We didn't disclaimer merely. Let's probablysay about ninety nine percent of the episode,
somebody cries, and it's not criesof sadness. It's just it's a
very cathartic therapeutic podcast. Listeners tellus they listen to us and cry.

(11:09):
We ourselves are talking and crying,So it's just shows how um open we're
willing to be and how open generallypeople should be to this conversation. Yeah,
okay, well that just helps mebecause I'm not gonna cry anymore.

(11:35):
My name is a Bafet. Youcall me Luther and it's all buffet.
He called me the full name nofair, no fair he can mean nothing
or buffet he can me. Iam the mother of three uniquely manifested children.
And the reason why I say threeuniquely manifested children is because the devil
was trying to try me. Iwas told that I wasn't going to have

(11:58):
any children, and that I shouldn'thave children because they were all gonna be,
you know, deformed, right.But God is wonderful. So by
the time that I got this horriblenews, I was already four months pregnant
with my first son. Before then, I had already lost ten children.
I just kept having miscarriages. Aftermiscarriage, I had my first son,

(12:22):
who was amazing, beautiful, thebest baby ever. And literally from not
having any children. Six months later, I get pregnant with my second child.
And my second child is my childwho has special needs. Her name
is Onya Camara Chuku, Yes Camara, and she's our only daughter and she

(12:43):
has autism, global delayed development,speech apraxia and ADHD. And I remember
when I was pregnant with Camara,basically around twenty four weeks. I woke
up and I was bleeding, myutreus had collapsed on top of her.
But you know something's happened that youknow that no matter what's supposed to happen,

(13:07):
a child wants to come into theworld. So even though all these
things happened, we got to thehospital and my doctor said to me that
if he hadn't been the one todo the scan to see the utress on
her, he would have said thatI was lying. It was like if
God had extra specially Kakunta again inthe womb, and we're able to go

(13:30):
throughout the full pregnancy. All mychildren are born at thirty seven weeks.
Because of my condition, I havesomething called a chromosomea displacement, which means
my chromosomes have changed places translocation,right, So hence why I was having
the miscarriages. Camara is okay,okay. So Camara is like the most

(13:58):
beautiful child. She's she loves themusic, she loves to dance, she
loves to sing, and just likeum Missy was saying, if you see
her, you won't know that shehas um special needs. Thank you,
um. And I think it's aI think it's people. I think having

(14:22):
people around. So autism is ahidden disability UM. Unlike the Down syndrome
diagnosis, which is very you know, clear, you can recognize someone who
has Down cyrendrome, or with Nimmiyou can see that she has CP cerebral

(14:43):
palsy. With Kamara and most autisticpeople, it's a hidden disability, which
in a sense actually kind of makesit a little harder because people will just
say, oh, what's with thatchild, Why don't you just, you
know, can't you deal with controyyour child, your child, not knowing

(15:07):
that child actually has additional needs,special needs. And I think one of
the things that we don't realize isthat Nigeria for me, has actually been
funny enough. I fight with Nigeriaall the time, but Nigerians have actually
been kinder to us as a family, meaning that once you tell people that

(15:35):
your child has a disability, onceyou educate them, people will go over
they will bend over backwards to helpyou. Meanwhile, I think in the
Western world they're so used to itthat it's become sort of normal. So
you still have to face other issueslike we face racism, we faced we

(15:56):
lived in England for a while andthere have been so many things. But
I have to just say that beinga special needs mom for me, showed
me how God wants us to love. My daughter taught me how to love
with my whole heart and how Godloves us. So I think that special
needs children are a gift to showus unconditional love and love that has no

(16:19):
you know, no boundaries, orlove that doesn't you know. They don't
lie, They don't lie. Soif you want to know if you're not
looking good, if you want toknow if you're beautiful, that special needs
child is going to tell you.So for me, my daughter taught me
God's love and I thought with Godfor a very long In fact, I

(16:40):
think God, am I still fighting? But my daughter has really taught us.
So yeah, that's it, andthat's me about faith care me lou,
thank you, and she doesn't answerto anything else, by the way.
Okay, so thank you all verymuch. These are all the ladies
on the panel today and you've hearda little bit about our stories. But
just to go back to what we'rehere to discuss today today, our focus

(17:03):
will be on how social media hashelped and hindered the special needs parenting journey.
Okay, as a special needs parent, I will say this just off
the top of my head, socialmedia has done an amazing amount to bring
together the community to communicate and toactually experience or just to see what other

(17:23):
parents are experiencing and what they're goingthrough, just to know that we're not
alone. So to start off with, we want to start off with how
can social media help the special needsparenting journey? Okay, so let me
build a cat let me go first. Yeah, so in twenty I think

(17:45):
I was twenty seventeen before then atstarted my special experienting. We're before then,
and I have a navigating the journeyingone day at a time. However,
when I started, I wanted likesomeone to read a book about someone

(18:06):
who had gone through my journey,to know that I was not a loan
And the truth is that I reallydidn't find you know. I got a
book written by an engineer and theperson didn't have a child with saber polsy.
Thereafter I saw a small book,you know about a woman who you

(18:27):
know, traveled to a place calledPetal Institute in Budhapest hungry. So I
read the book, I went toHungry for the first time. I came
back. Now twenty fourteen, twentyseventeen, I went again and listen around
site, document my story and myjourney and started to do it on Facebook.

(18:49):
So I started writing my everyday journeyas a specialist mom. Because when
I said that my journey, Ididn't see children like my child in church,
in schools, on the supermarkets.So I was angry with God that
this student doesn't exists. So outcomethat you gave me, you know,

(19:11):
out of maybe a billion people,it was me what seeing the die commits
because I felt, you know thatit was us a minute number of unfortunate
people that have children with special needs. But when you go on social media,
different sharing my storytowing on social media, women from different economic status,

(19:36):
different colors, different tribes, differentlocations, both Nigeria and assid Nigeria came
to meet me behind the scenes inmy DMS to say, oh I have
the same situation. Oh I havethe same situation. And with that,
you know, I realized that Iwas not alone. That's the first thing.

(19:56):
There are so many people hiding theirchildren at home, but nobody was
bold enough to come out and say, hey, special needs children exists.
Yeah, special needs children are here. When you think about okay, so
now I'm actually processing this for thefirst time, which is really weird to
do it. Here is that whenyou think about the number of Nigerian parents

(20:19):
who have special needs children and thenyou transfer that to how many you see
communicating that on social media, it'svery few. It's next to enough because
when I think about the communities Ifollow or the people that DM me and
that we see, there are veryfew Africans because Nigerians. But yeah,

(20:45):
one of the things that I rememberis the first time I posted Alex on
my Instagram page. We were swimmingand I posted them up and then I
put my sunglasses on him. Mycousin in law went and had a conversation
with my mother in law to belike, she's not hiding him. Yeah.
And my comment when my mother inlaw repeated that statement to me,

(21:07):
I was like, why do Ihide my child? Why? That's the
African thing to do. Unfortunately,that's not my thing. I have a
child, a beautiful child for thatmatter, and he's very good looking.
I have to say, I'm tryingto turn him into a model. Okay,
so I post him up because we'reswimming. How everybody likes to putt
there are things up about their children, and my response was, she's not

(21:30):
hiding. So I think one ofthe things that for me, like Pocola,
I started a page called Kamara's Talksa couple of years ago on Instagram,
and I remember the first time whenI started it, my ex husband
at the time was like, whyare you putting her up? What is
all this about? But for meit was really difficult because I was like

(21:51):
too promped. It looked like Ihad accepted her diagnosis, but really that
was just my own way of ifI put her, Yeah, if I
don't hide her, then it wouldmake it easier. And I remember the
amount of women, just like yousaid, who would send me messages,
people that would be like, oh, my sister has autism, or because

(22:12):
I showed you. There's one particularstory that really stood out to me.
A friend of mine, her brotheris thirty thirty, and she said that
it was until she showed her moma video of my daughter Kamara that her
mom broke down. And I thinkthat year they were able to take their

(22:32):
brother to America, but before thenthey used to hide him from society and
he was thirty and I thought tomyself, just like everyone else, I
have never seen a child. Iactually did not know anything about autism until
I had a child, and Iremember we did a gofund me for a
Camara. I got some of themost painful I got phone calls from people

(22:55):
telling me that how could somebody froma family like mine come out to disgrace
their family, to embarrass their family? Why was I being so it was
such a like a big thing.But then I also had a lot of
people who donated, who you know, supported us, So it just showed
that I wasn't mad, I wasn'tthe only one, but that there were

(23:18):
many people who were just keeping theirchildren out of you know. But social
media truly was my I mean,I think America can go out now to
many places that many people know herbecause of that. But social media was
a healer from the exact community,right, So we might not find that
community in the physical world, butyou're able to gain that. I mean,

(23:41):
I literally made friends with people Idon't know in real life from all
over the world, like Japan,Mexico, Hawaii, like oh, I'm
not going to Jack, but thereis that feeling Okay, really I'm not
a So there's a certain amount ofcommunity that's there and then information information.

(24:07):
Oh my god, what do youfeel? How how has it helped your
access to resources? So I thinkone of the things like global development delay
first of all, so it's youknow, development, okay, So global
development delay is I think for me, it's like an overall. So I
represent the mummy that's still discovering things. These ones, these are my champions
when discovering about me. I'm stillkind of like my head is inside the

(24:30):
sun. I'm like, oh boy, this journey is much. These guys
are like super egos. Me.I admit I cannot do it. I
don't want to do it. Myhead is pinning me. But I love
her. So we're just going tomanage and continued life like she's just a
normal child. And that's what Ido. But I found that the information
for global development delay, which Ihave no idea what it was, is

(24:53):
a child who is basically behind intheir development, in their developmental milestones.
And I found a Facebook page withparents with global development delay. And you
know when you have that moment ofoh my god, my baby does this.
Oh yes, like me too,And you know, I got so
much information on how to you know, how to hold her? You know

(25:14):
the kinds of things that I shoulddo, what I should give her.
You know, it was just soamazing. And you know this was Facebook,
you know Facebook. I was reallybig on Facebook before Instagram stole my
heart spot. Facebook was a mine, a mind, It's treasured troth of
information. So yeah, it wasgreat. Yeah, why were you looking

(25:37):
like that? Because okay, soI'm still on resources. You know,
for me, I never knew theby support groups in Nangeria. To my
amazement, you know, Facebook,I realized that we had, you know,
big support groups for autism, forswap policy, for spina bifider different

(26:03):
you know, things happening that peopledon't even know. Because when I said
my journey, I felt that wasthe only one that was. That's always
feeling like what has God abandoned me? Where's my all life? This?
Because you just feel that these thingsdon't exist. So begin to realize that
it exists, you calm down.It's like therapeutic. Oh so I'm not
even alone, So it's not sothis thing happens. So it's the medical

(26:26):
condition. It's not a spiritual attack. Okay, now what they can we
do? You know, it helpsyou, It gives you confidence, It
gives you reassurance that's okay, Idon't have a personal, unique, genuine
problem that I picked up along theway. They begin to realize, okay,
what else can I do? Sosocial media has done that for me,
and I've also gone ahead to replicatethese communities, but you know,

(26:51):
helping other mothers who don't have accessto a lot of informations or how that
I put its skills to enable themto care for their children and care for
themselves. Because in Africa, weare here because we're a bet privileged that
women who are not privileged to otherthings. We know where we're able to
do research some of them kind ofresearch and everything that affects us still affects

(27:15):
them, plus cost of living inNigeria. So we also in our own
way are also helping moms, youknow, to navigate this journey and that
hasn't possible true social media. Thankyou all right, ladies and gentlemen,
thank you so much for being withus here today. So first of all,
we just like to say big thankyou to my co hosts here today.

(27:37):
Bday Tonia for Lugi and you haveto say her name like that.
My name is mc Vajimalutai where weare Special Moms Africa and please follow us
on social media. This is actuallyour last episode, so please look out

(28:00):
for all our previous episodes on AfricaBusiness Radio, the app or wherever you
get your podcast from. Please donot forget to subscribe, like and share,
you know what to do. Okay, and thank you very very very
much for listening to us, andagain listen to your episodes, cry,
share you know and one another andplease be kind to each other. Thanks,

(28:23):
Thank you so much to Africa Nextfor having a I'm toye fa lookis.
If you're enjoying this episode of SpecialMoms Africa brought to you by Simons
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(28:47):
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