Social Media and the Special Needs Parenting Journey Part 2

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):
You know, when you're standing fromAFA is easy to say so many things.
You're not walking in my shoes,you know, so I just smile
at your ignorance or whatever it maybe. Hello, in good afternoon,
Hello, and welcome to Special Mom'sAfrica the Podcast, and this is real

(00:25):
talk on special needs parenting. Myname is mc Fatmolu Taiwo and I'm your
lead host on today's episode. Ialso have here with me some very amazing
ladies. I have to say,if you're just joining us for the first
time. Over to my extreme left, we have Bucola dy here and to

(00:49):
my immediate left we have Tonya forLugi's right. And to my right here
is the very beautiful, the SensualHello. How are you okay? And
just a quick note to our regularlisteners, we may sound a little bit

(01:11):
different today because we are coming fromthe African Next Podcast stage, to which
we're very honored to be on.But we'll speak more on that a little
bit later. Now, just let'sget started. So I think I think
you know, the social media isreally kind of it's about democratization, right,

(01:32):
and when you have those crazy thoughtsin the middle of the night and
for a long time, and manyof us here it was hard to sleep,
especially initially when you get the diagnosisand you spend a lot of time
reading, researching, and that canmean you sometimes go down this rabbit hole.

(01:56):
But in there's just so much amazinginformation. I was able to really
look at and read up on differenttherapies I've been exposed to try and understand
my child. But most of all, for me, it was just to
see the visuals of other people withDown syndrome. What do they look like,

(02:17):
how do they act? Interact?I just wanted to see the ordinary
life. I wasn't looking for anythingexceptional, just how do families just get
on with it on day to day? So to be exposed through social media,
for me, it's been more Instagram. I was more active on Facebook,

(02:39):
and I wasn't on Instagram until Ithink two years ago because of the
platform we started called Simons Oasis orI had to kind of get an Instagram
page. That's why, otherwise Iwouldn't be there. Let me not life,
but just watching stuff like reels.The suggestions that the algorithms gives you

(03:01):
means that you can see just theregular life, and I want to know
my child can live an ordinary life, and to me, the fact that
she can is exceptional. And thatis what social media has given to me.
It's been that gift of assurance,knowing that if we put in this

(03:23):
hard work now while they're young,they can have a job, they can
get married, they can have children, they can be independent. But there's
a certain amount of work we haveto do. But we can educate ourselves
by watching others, literally watching otherpeople do it. We can copy and
not necessarily pacede but copy and findwhat works for your unique child exactly,

(03:46):
copy and adapt. I like thatfor example, like from what you said.
Okay, so let's say, forexample, we have our resources,
we have our information and our knowledgeand everything. Now, for example,
we have our children with special needs, and then the social media is giving
us a platform where we can seeall these other children and all these other

(04:06):
families and how they're interacting and howthey're progressing. I believe we can also
find vocations for our children and thingsthat they can do. Hand on heart,
I'm trying to turn my son intoa model because the other day,
Victoria's Secret had its first model withdown syndrome. Right, yeah, and

(04:28):
that's possible. Do you have children'swith down syndrome in series on movies,
that sort of thing. It's justabout. For example, my son has
to have speech therapy and I've tried. I tried to start that as early
as possible. For me, itwas like a start stop, start stop
sort of thing, because it's veryimportant the kind of community, the kind

(04:49):
of support that you have when itcomes to your special needs child. So
it was very expensive for me.So I started and then I stopped,
and then I found another I thinkyou Tonio was the one that introduced me
to the doctor who has a centerand her rates are reasonable. She has

(05:10):
you know, this staff that areable to do what they need to do
with my child over the period ofa week, and I saw the progress
because at the end of the day, one of my goals, and I'm
going to say this right now,is to prove all the people wrong who
look at my child and think he'snot going to amount to anything. They
haven't said it directly to my face, but you see the way they relate

(05:32):
to him, the things they willsay, like, oh, he doesn't
really need to go to school,or he can just sit at home.
You know, when you hear differentthings and you see the way different people
react to a child. You thensay to yourself, as a mother who
loves my child, I have twoboys, I will be like, you
know what it is when my songraduates from university, when my son gets
married, when my son has youknow, his children, when he makes

(05:55):
progress. Basically, you will seeall the milestones this child is able to
achieve. That social media platform isand the different social media platforms, the
different social media pages. They're givingme the support that they don't even realize
that they're giving me to be ableto say if your child can do it,
my child can do it, andyou know what he's going to achieve,

(06:16):
feaks, bounds and leaps that heeven he or even I did not
imagine. So one day it willbe possible and be sitting there like a
proud mama. Yes, I thinksocial media is amazing in giving you visuals
of what is possible. I thinksometimes unfortunately, when we're hearing Nigeria,

(06:38):
all we see is the negative sideof children with special needs. But when
you're able to see a world viewof what other children can do, it
begins to give you hope in yourheart that okay, it's possible, that
my child. Could you know seeing, could dance, could write? I
mean this morning I was telling afriend of mine that I was telling a

(06:59):
Nanti that I would really depressed becausemy daughter is getting older and I'm thinking
what is going to happen? Andthen she sends me this articles about her
two nephews and one is he hasdown so he's a triple gold medalist for
Special Olympics in Nigeria, and thenanother one is doing something else and she
goes about acamy. Don't ever losehope. You know that even here in

(07:24):
Nigeria you have people who are doingamazing things and they have special needs.
So don't just think it's about you. Let me use toils or Jack Bye,
because me I'm team Jack b oldWay. So but I'm getting more
and more comfortable with the fact thateven here in Nigeria, that she can
live a full life and their people. I mean, I think the best

(07:46):
thing for me was reconnecting again withthese women because they've shown me strength.
Like a lot of times, Ijust want to sit down and say,
you know what, this journey isnot for anybody. This journey is not
fair. But you know, betweenTonya Bookie and YEMC. They are kick
ass people, like a chemy,you cannot feel sorry for yourself. You're

(08:11):
not going to do this. Ifyou don't do it, who's gonna do
it? And I'm just like hello, but they are really amazing and letting
me know that, you know what, as a team, you can do
anything. And when you have otherpeople who are in the same journey as
you, that there's hope and trulyand honestly for anyone who has a special

(08:31):
needs child or anyone who has umyou know, relatives or friends with special
needs, truly, you have tolook up, you know, to people
who also are on the same journeyand who are doing things progressively. And
that's where social media and podcasts likethis really help. Yeah, so let
me come in here. One bigthing you know that I forgot to mention

(08:52):
that social media has done for meis to see beyond like what's or thinking
family said about the impossibilities that wesee in an engineer and see possibilities And
the biggest I have seen is technologybecause for my daughter who has you know,
severe physical impairment, like she can'tuse her fallings as her legs and

(09:13):
her hand and she has speech impairmentput on their control. I hae just
saying all those things that I'm justlisted, and you know, and we're
able to realize that she could learn, she could learn, she could her
cognitive was okay, you know,like a neurotypical child. However, she

(09:33):
had all these challenges and I keptwondering how a We're going to do it.
Then as I was serving to youthe social media, someone said,
oh, eye tracker, that's like, it's the one I saw was the
Toby Dana Rocks series whereby the childcan look at the laptop or the iPad,

(09:54):
you know, with her eyes,and it's going to convert it into
text and converts into speech. Isaid, hu, la la, it's
our possibilities. So social media gaveme the opportunity to see things that are
happening in the Western world. Itopen my eyes. Also, my child
can't do this, Oh my childcan't do that. So open my mind

(10:15):
to possibilities. And today I don'tput any limits on my child. I
celebrate her and I just think ofall the great things that are possible.
That's lovely, Okay, because we'retalking about social media here, we want
to talk about the positives so they'realways pros. And we also want to
talk about the cons. How doyou guys feel that social media can hinder

(10:37):
or have a negative effect on thesocial social news I start, so I
think for me, the cons ofsocial media is the obvious keyboard people from
the keyboard troll, keyboard idiots.Sorry, this is one. I love
filter speech, like people who justdon't have anything to do with their lives.

(11:01):
Negativity also, so two examples,just people who come on your page.
So I rarely have negative comments,and that's honestly the truth. But
once in a while, you're justgonna find somebody, and it's those things
that make you want to I knowhow many times I've closed my page or
taking my children's pictures of social mediabecause I'm just thinking, why am I

(11:26):
putting my children in this? Youknow, they didn't ask for it.
Were sharing their journey because it's important, but really did they ask for it?
So when it comments comes up,or something happens, or they're my
sons especially are the ones who come. I have an older son and a
younger son, and last week myolder son came to me and it was

(11:48):
a social media thing because someone hadseen my page you know, and they
had asked him in school, oh, so you have a sister with special
needs? And he had come tome and he said, Mummy, that
can I fast? And I waslike, why do you want to fast?
Then he was like, because ifI don't fast, God is not
going to heal her. And Ithought to myself, you know, you

(12:11):
know, so those are the consthat make you just want to like,
I literally was about to shut thepage down, but I haven't. I've
kept it up. But so thatfor me, is one of the cons.
There are other technological things, butfor social media cons, it's just
those people that have nothing else todo with their lives. So that's mine.
Yeah, well, you know,I just to add on to about

(12:37):
a chemis comments. I really werarely, very rarely, like almost never,
maybe one percent even or less thatone percent get any negatives on Simon,
But you touched on something. There'sa so called pastor dms me and
said I should send my daughter tohim that he can get read of the

(13:01):
condition. And the thing is,I honestly don't think he meant it from
a place of wickedness. He trulybelieved that, and so be it.
But my reply was why would Igive back my blessing? And that's how
I left it and I never respondedto him again after that. Yes,

(13:24):
you think about times. Yes,God could just take this down syndrome away,
her life would be easier. ButI believe there's a reason now my
issues with social media, and thenext is huge positives, but also about
I'm all about the hashtag. Representationmatters in content for kids, in content

(13:45):
for disabilities, but a majority ofwhat is seen because those who are mostly
talking about the disabilities are people whoare Caucasian, which means the conversation is
often skewed to caucacity. I don'tknow if that's a real word, but
it sounds good to me. Andso what that naturally means is that often

(14:09):
the blackness of special needs is leftout of the conversation. And it also
means that, for example, ifyou're abroad, you are less likely to
be diagnosed, your condition is lesslikely to be taken seriously, your treatments
is going to be inferior. Andso that's why it's very important that we

(14:35):
share our stories and we speak up, because we need people to understand that
special needs is not an issue ofcolor, race, socio economic class.
It happens to everybody from all walksof life. And so we need more
Africans, Nigerians, black people aroundthe world to share their own journey.

(15:01):
And this because to be honest,we need to change the algorithm. That's
very true. That's very very true. Locall, do you have anything as
well a lot? I'll just say, okay, so yes, the people
pressure rise, you know, insympathy or because they understand. Yes,

(15:22):
So in some when I want togo really deep on like narrating my daughter's
experience or so our darknoses, I'llput the like up in notes. Please
our my Christian brothers and sisters,because don't come to my DM this whatever
you want to say in the commentsections, I'm fine with it. So

(15:43):
because I get people in my DMSevery day, I'm not minding what every
day that sent me, you know, their pastors, contact their programs,
and I'm fine with it. Butif it's too much, I block you
for my own mental health of course, So of course, and people will
say, oh, you don't haveenough faith, you don't believe it,

(16:04):
will say all sorts of things,what did you do when you were pregnant?
Where did you go you know,you know where you're standing from alfa
is easy to say so many things. You're not walking in my shoes,
you know, so I just smileat your ignorance or whatever it may be.
You know. So let's leave thatat that, because there will always

(16:26):
be till kingdom come the old peoplein like that. What about people that
think that it's contagious? Oh yeah, yeah. If the stigma in Africa,
it's not just a Nigeria in Africa, it will western world. Do
you still have that? You know? So you can't? I mean so
another aspect you know that I seeis the pressure so for restance. Um,

(16:52):
I celebrate my daughter who um,she's very intelligent, and the mother
will say, hey, how calm, her own child is very intelligent,
and they'll start putting pressure on theirown children, not knowing that, yes,
my don have a be intelligent,but he has her. Let's see
challenges. The fact that I decideto focus on only and write only deposity,

(17:19):
it also mean that they're also behindthe scenes. And like I posted,
I think yesterday I said, doyou like picture? Said? Do
you like this picture? I said, Before we could get this picture,
we selected from over twenty pictures thatwe did not post, so you don't
really know the true picture until youcome closer sect. Also, other times

(17:44):
we see some cases on social mediaand we feel pressureized. If only my
child was like this, if onlymy child had the skills, you don't
know the other things, and youknow, like someone has said here today,
I think it's to it. We'reall on different parts. You know,
our journeys are different, Our partsare different, the things we will
go to our own narration, it'sdifferent. Each child is unique, each

(18:07):
child is different. So I thinkthere's a pressure on even amongst the especialist
community, there's pressure or your childis able to do this, my child
is not able to do that.Then I also see a lot of permit
me start style begging. You know, people put their children in such on

(18:32):
I don't know in such partners thatI get irritated. It's not that I'm
saying you shouldn't put your child inthe best position way, but you can't
place your child so child to lookso horrible that you're going through a lot,
you know, just so people cangive you money. So I see

(18:52):
that, and to me, itjust helps to buttress the narration. Now
people just see children, especially asliability as a charity exactly, exactly,
And that really gets to me becausewhen when even the government thinks of disability
or anything, they think of thepeople that are coming to call the money

(19:14):
from our pockets. Nothing to giveback, just liability. So we some
some parents, you know, helpto create that narration of pressure in parents,
or they are beggars, they needsomething, you know, charity kets
you know. So those are thethings that I see amongst others are accounts
of social media. With regards tothe CONTs, I mean, you guys

(19:38):
have made excellent, excellent, westill have more examples. The for me,
one of the key negativities about socialmedia. We see other families and
how they're thriving or not thriving.We see how families are progressing and the
different challenges that they may face.Another thing that we need to be aware
of is the harm that is doneto special needs individuals and children. Okay,

(20:03):
just recently, I think earlier onthis week, the week before,
there have been stories that have beenpopping up not here, but I dread
to imagine what's going on in thiscountry that we don't know about. Two
different completely unconnected children with Down syndromewere found starved to death in rooms that

(20:27):
they had been locked up in,where the walls are covered in feces,
and they're being locked away, andthey're being kept away from the public,
and because they have Down syndrome,because they have special needs, the media
is not reacting, The police aren'treacting. The officials that are supposed to

(20:48):
be reacting are not reacting. Oneof the things that people need to understand
is this special needs is just adelay. They function a little bit differently.
So for example, if you're inclass and there's the smartest student in
class, and then there's the otherstudent who takes a little bit longer to
actually understand what the teacher is teachingthem. One of the things that I

(21:11):
used to say, because Alex hasa younger brother who's a year and three
months younger than him, and youknow, Alex is seven, Mica has
six. Mica is doing as anatypical neurotypical child. He's doing what he's
supposed to be doing at that age, and he gets frustrated a little sometimes
and I will turn around to himand I say to him, Alex just

(21:32):
needs a little bit more time tolearn these things, and that's one of
the things that we need to realize. And we wanted the negative and maybe
it may be a positive for socialmedia. For me is it helps to
teach me and I think a lotof other people as well, to say
they are these things. The stigmastill exists, the way, the negativity,

(21:53):
the things, the bad things peopledo to special needs children, they
still exist. They hide it.One day they get caught. Somebody killed
somebody and then the person gets whatfive years in jail. But you've ended
somebody's life, if it's a neurotypicalchild. Their headlines, there's this,
there's that. But because somebody hasa disability, a special need some extra

(22:18):
care and comfort, that person isneglected. So, like we've said,
there are lots of negatives, butwe must take the positive from these negatives
to say, you know what,if this is going on, I'm making
that extra special effort to do thatextra for this child, for this community.
Just to be an advocate. That'swhy we're here. That's why you

(22:40):
know, we're talking about this.So that's why we're on this stage.
That's why we have our podcast,you know, so we can spread awareness.
We're advocates for our children. We'realso advocates for all the other children
out there, and we are tryingto make this a larger platform and something
much much much much much larger that'sgoing to touch touch touch touch. So
many people ball, you know,sorry, let me say something. I

(23:02):
think it was last year. Icame across a page on Facebook and they
were having a discussion or a debateabout children. You know, it was
studren with silver policy. But someonehad narrated her experience about these child you
know, who could not work,so who was crawling like moving moving,

(23:26):
creeping on the floor, yes,and the of them called the child a
snake, and the stand and onewoman said, oh, in my village,
we've seen children like that, thatthey are spiritual, that they're snakes.
And different people stare giving how itshould be handled, whether she puts

(23:48):
her hand in the stream or thestream will wash he away, or that
she puts her in the parts orthings. This twenty five centurial that was
last year or not nineteen eighteen,and anyone who said anything positive will be
shut down and said if you don'tknow anything, you put don't know anything.
And you know that's that discussion hadso many people and that is the

(24:12):
bad band bandon effects on social media, somebody is putting up if a wrong
you know, narration of what specialitiesis, and everybody is supporting. So
I think you you have it intwo ways. Even what that means our
own voices have to be louder thanpeople say rubbish. That's what that's what
you see. The unfortunate thing isthe country we live, in the continent

(24:34):
we live, and that's what peoplebelieve. That is what people believe.
It's the belief that you give birthto a child with special needs, it's
a spiritual attack. You didn't prayenough when you were pregnant. Who were
you hanging out with? Why didyou go to this person's house? I
told you not to do this,this and that, this and that,
this and that. That's why you'regoing to continue to get the pastors in

(24:55):
your DM telling you this, tellingyou that the culture with which we come
from, that is what is happening. We've heard stories of children, children
like a year old, being castout into the road because they say the
child is a witch, and theywill leave the child to starve to death
and shield people adults. They willpass by the child, they will mock

(25:15):
the child. They will beat tothe child because that is the belief system
from which we exist. So thefour of us we sit here, we're
saying where advocates were advocates. Peoplewill come up. You're like, yeah,
well done, yes this, youdon't know what they're thinking. I'm
not saying everybody is like that,but a lot of people will come up
and be like, well done,well done. This this is that.
I'll give you an example. Myson's birthday, I think he was five

(25:40):
years old. We had a birthdayparty for him. We also have a
group that we're all in where it'scalled extra Special, extra special love right
basically, so I invited all thechildren, their mothers and the children to
the party. I had family memberscome with their kids. Now, usually
when there's a family birthday party,you know how, it's a family member,

(26:03):
it's an in law, it's acousin, it's something everybody will stay
from the beginning to the very end, where the kids are even having their
showers in the evening in each other'shouses before they go to sleep, and
you put them in the car beforethe parents go off. These people left
within an hour and a half.And the one thing that I noticed was
at one period of time, agroup of them stood to one side and

(26:23):
we're watching all the other children.I didn't understand why, and I asked,
and I was like, after theyleft, I sent a message.
I was like, why do youguys leave so soon? Oh? My
dad called us. We needed to, We needed to. So here's what
happens. About a month later,it's somebody's birthday. We all go,
the adults this time where it's somebody'shouse. It's somebody's birthday. One of

(26:45):
them has a little bit to drinkand she's drinking. She drank a little
bit too much. So I say, hey, remember Alex's birthday. Why
do you guys leave so soon?Well, you know, and she's yeah,
she's had a bit. Oh well, you know you had all those
children, you know, had allthe special and then your typical siblings.

(27:07):
You were having a blast. Yep, you don't call them special from those
children. You had those children,you know, the down They didn't even
know they were like people from thedown syndrome society were there, you know
that. I was like, oh, so that's why, because I noticed
they were all standing and they werewatching, and these are family members who
to my face will be like,oh, how's Alex. Oh my god,

(27:30):
he's doing so well. Oh mygoodness, it's an amazing oh wow.
Yeah, you know that sort ofthing. You have to be your
own advocates. You have to bein your own special needs. Of all,
when I gave birth to my son, I didn't know I was as
strong as I was. When somebodywould say something, I would literally be
in a karate position about to takethat person down. But you know what
it is, what it is atthe end of the day. All right,

(27:52):
ladies and gentlemen, thank you somuch for being with us here today.
So first of all, we justlike to say big thank you to
my co hosts here today, dayTonia for Luis and you have to say
her name like that. My nameis Mcvatmalutai where we are Special Moms Africa

(28:15):
and please follow us on social media, so please look out for all our
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to do. Okay, and thankyou very very very much for listening to
us and again listen to your episodecry share you know and one another and

(28:41):
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for having U. I'm Toye forLouis. If you're enjoying this episode of
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(29:03):
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