Down Syndrome And Intellectual Disability - Rose Mordi

We meet a trailblazer in the special needs community, the founder of Down Syndrome Nigeria, Mrs Rose Mordi. She has a 34-year-old daughter with DS

Episode Transcript

(00:00):
That we need to explain that notall intellectual disability is Town syndroma. Wow,
and that is something that we needto educate the public. Hello everybody,
and welcome to Special Moms Africa,the podcast Real Talk on special needs

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parenting. I'm figuring you kind ofknow my voice already, but if you
don't, my name is Toyo faLuik. Yes you hear a person that's
that very troublemaker with the beautiful smilehere in the studio by myself or she's
joining by zoom. But I couldn'tdo this without it, thank god,

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it's not by choice. So I'mjust very privileged to also have her as
my co host today. Now what'sour topic. Well, we are going
to take another look at Downs syndrome, but specifically looking at the aspect of
intellectual disability. So let's do areal quick refresher of what Down syndrome is

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and I'll take the definition from mybook Uger and Simpson. What is Down
syndrome the children's book so Down syndromeis also called Try to Meet twenty one.
It is a condition where a babyis born with an extra chromosome of
an extra copy of chromosome twenty one. Down syndrome can affect how a child
develops, and one of the mostprobably visible characteristics is the upward slanted eye.

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So that's like a real tiny definition. Now Children's Hospital dot Org says
most children with Down syndrome have somelevel of intellectual disability, usually in the
mild moderate range. People with mildintellectual disability are usually able to learn how

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to do everyday things like read,older, job, and take public transportation
on their own. People with moderateintellectual disability usually need more support. Thanks
to special education and community programs,people with Down syndrome can graduate from high
school, attend college, and workin their communities. To help children with

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Down syndrome reach their highest potential,parents can seek out developmental and special education
services for children with Down syndrome startingat birth with early intervention. With all
that said, we cannot wait tomeet our trail blazing guest right after this
break. I'm Toyo fa luiks.If you're enjoying this episode of Special Moms

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Africa, brought to you by Simone'sOasis and Africa Business Radio, then why
not listen to our other podcast,represented storybooks and more for African Kids Now
don't forget to subscribe, put onyour notifications and share with loads of people
out there. Thanks for listening.Welcome back. And the person we are

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meeting today is missus Rose Kaite Mardi, So before we actually meet her,
let me tell you a little bitabout her. She's a British trained business
administrator, founder and president of theDown Syndrome Foundation of Nigeria and NGEO that
caters for children and adults with Downsyndrome in Nigeria and other West African countries.

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The Foundation was established primarily to carefor children with Down syndrome in four
core areas, educational, vocational,medical and social integration. The Foundation has
recorded great achievements under her leadership,sponsoring many children overseas for medical procedures,

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organized seminars locally and internationally, participatedin special Olympics International Games, educational and
vocational training for people with Down syndrome, awareness, creation and advocacy. She
co initiated to Save a Life ProjectThat's s ALP, which is a charity
associated with the Down Syndrome Foundation,a spokesperson and advocate for people with intellectual

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disability, chairperson of Africa Down SyndromeNetwork, and a trustee in various charities
and clubs. Man she is aheavyweight. Missus Mordi has received several awards
locally and internationally in recognition of hercontribution to the less privileged in the society.
She is total, utterly committed tochanging the negative society or mindset in

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African society towards people with disability,and relentless in her effort to give the
less privileged a chance to contribute effectivelytoo and be appreciated by the society.
We are so privileged to have youhere. Welcome, missus Mordia. It's
a pleasure to be here today.So it's always a pleasure. It really

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really is a pleasure always to seeyou. Now from your experience, missus
Mordi, how does intellectually you knowthe intellectual disability usually present with Down syndrome.
Could you give us some examples.That's an open ended question. I've

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lit a bit difficult to explain.You've actually gone into plaining what down syndom
is. Plan danncydom is a formof intellectual disability, and then it presents
in so many ways. But Iwould be most specific talking from the angle

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of Down syndrome. As you wellknow, intellectual disability is wide ranged.
We have people with them different orthe spectrum like autism, cerebral policy and
the rest of it, and theypresent in different ways. But with people
with Down syndrome, their own isboth physical and intellectual because you would know

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them from their features and the waythey move and so on, and then
academically also they are below average.And that's in our society. I believe
every disability, intellectual disability, thezero is down to Down syndrome, which

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is actually not strictly correct. Youjust hit on something, so you're saying
that a lot of times people justassume that someone who has, you know,
an intellectual disability has Down syndrome,even though they may not have Down

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syndrome exactly. Absolutely in our sociality. Yes, okay, that's interesting because
over the years I have met numerousfamilies that come with various forms of disabilities
which they call Down syndrome, andthey bring to us and I have to
educate them and let them know,even though still give them help, that

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we need to explain that not allintellectual disability is Down syndrome. Wow,
And that is something that we needto educate the public because I think since
Down syndrome had been projected over theyears, every parent, most parents think
that every intellectual disability is Town syndrome. Wow, okay, I did not

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know that, So that's really quiteum an interesting observation. So yeah,
I think I think what happened isfor parents is just what they've heard.
Because I also I am aware thatanyone that has a mobility disorder, parents
feel or the child has a riverpolicy, right do you understand because of

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the most well known, maybe themost obvious exactly, you know, So
I think it's not what parents areexposed to. If they're exposed to this,
so they think all disability is this. So yeah, absolutely, you've
just hit the nail on the head. So like that because you've said it.
Because as parents, parents are concernand in Nigeria and particular most parents

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every intellectual disability Bown syndrome. Andthis is something I think we need to
locate the public on it. Sopeople need to understand the diagnosis of their
child in order to get the accuratediagnosis to be able to address the needs
of their child. Can you giveus like an example of specific you know,

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because yes, the intellectual disabilities canbe wide ranging. But you can
pick one example and just explain incontext, you know an intellectual disability that
you've come across. Let me takethe other very common one that's autism.
And this spectrum is quite wide rangedeven in autism. But then for those

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of them who have severe autism,most parents they think that they cannot be
trained. There are a lot ofthings that need to be addressed, a
lot of issues that need to beexplained to parents because it has specific needs.

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Each disability has specific way of handling. Even within the intellectual disability sector,
autism people a lot of children whohave autism. Most of them are
nonverbal and they have specific way ofbehavior and there are things that you need

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to look out for to be ableto understand. But I always advocate for
specialist intervention. You need to havea specialist who should be able to address
it and advise, not for youto go by what you see or what

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people tell you. And let menow come back to Down syndrome. When
we started about twenty one years agoin Nigeria, we really had a lot
of challenges to face to explain toparents the specific needs of our young ones
with Town syndrome that some of themwould think, oh they it says spiritual

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attacked, there's something wrong somewhere,or somebody did something to me from the
village, and so on, allsorts of things that you where there's need
for parents and the society to knowabout those things that we should do or
look out for. And that iswhat I always tell people. Number one,

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early medical intervention is very vital.You need a specialist, and with
intellectual disability, they need a multidisciplinaryteam of specialists both in the medical social
education as sector to be able todiagnose properly and then put in place those

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things that need to be dune forthe child to thrive and be able to
navigate their way through life. Andthat's my advice. Simply get expect advice.
So you actually have answered my nextquestion already because you are just such
a professional, Missus Moody, butyou know, looking at that, just

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to reiterate some of those points,it's really important to get the diagnosis for
your child, don't guess. It'sreally important that you do that sooner than
later so that you can start theintervention as soon as possible. As Missus
Moody said, early intervention is crucial, vital to the success of the child

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in later years, and it reallydoes make a difference. But I want
you to state something, missus Mordy. Is there a cure for Down syndrome.
That's a question. I have beenasked a million in one time.
I figured I'm sure, But likeI do, down syndrome is not a

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disease. It's not an illness.It is a condition. Are you are
you sure, mother? I can'ttake supplements for it? Started Are you
sure I can't go and do themselvesand do a sort for it. Don't
let anybody they save you problem.Let's say number one. Down syndrome is

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not an illness. It's not adisease. It is a condition. Let
me explain down syndrome. It's acondition that a child book is going to
be born with that condition is bornwith an extra material in the cell.
They have fourty seven chromosomes as againstforty six the rest of us have.

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And mind you, we have trillionsof cells in our body, and there
is no way, as far asI know up till now, that the
medical experts have told me they'll beable to remove that extra chromosome from all
those trillions of cells. So whatI'm saying is that downsandome is not an

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illness, it is a condition,but they are predisposed to some medical conditions
that need to be addressed, justlike a brother person. That is more
prevalent among the children or people withDown syndrome, and that's where we need
to really educate people about, notthat you can cure Down syndrome since Down

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syndrome is not a disease, butthe fact that you need to have an
early medical intervention because they are prettyposed to a lot of medical issues due
to that extra chromosome. They havesee an expert in this field and that's
why we have her on to day. So leading from there, I want

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to know the kind of work youdo at Down Syndrome Foundation Nigeria, including
some of the interventions you have inhouse that you do to address intellectual disability.
What does a day in the lifeof DSFN. What is it like?
Wow, it's very interesting a dayin the life of us there at

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the foundation. We wake up andhit the ground running every day. Incidentally,
let me explain what we do butwhich we started about I think seventeen
fifteen years ago, even though we'vebeen running it for the last twenty one
years in Nigeria. We started firstas a support group. I started it

(16:03):
in my sitting room. I gota few of the parents then who were
bold enough to come out to joinme, and then I started educating them
and telling them, I'm just goingto interrupt you, So why did you
do that? I'm involved, Likecould you could say it? Because I'm

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involved, I'm my parents. Mylast child, who is going to turn
thirty five in a few months,was born with a condition called Dance syndrome,
and when we returned back well,I had her in Nigeria and I
realized that when I had her,I realized that there was little or nothing

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known about dance syndrome in Nigeria.As a matter of let me just give
you a little brief background as mylittle story about her. Back please by
two other older children, and Ihad them in the UK. I remember
when I was expecting my first child, we had the antenatal clinic that we

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were going to and then I rememberthat one of the antenatal classes addressed the
issue of Down syndrome and that wasthe first time I ever saw the picture
of the childwood dwncing Romanico was explainedin detail because that's what it's usually done
to let the parents know so thatat least it won't come as a shock

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if your child is born with thatcondition, you should know. I didn't
know that ten years down the line, I would come to have a childwood
down syndromana. By that time,we had returned back to Nigeria and I
had her in one of the bestteaching hospitals in the country. And I
remember towards my I think fat,trim and style, that I started having

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a lot of issues, ship veryheavy on me, and I was wondering,
and I was having all sorts ofissues, swollen legs and one illness
or the other. I went tomy preditation. They said I didn't have
anything to worry and so on.But I think maybe it's a mother's instinct

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that which I think most of usmothers do have. And I kept worrying.
I said, there's something not quiteright about this baby I'm carrying.
The doctor told me, or maybethe boy. I said, no,
I already have a boy, sothere must be something. They kept assuring
me there was nothing wrong, andthen I needed to have an elective CS

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and they gave the dates. Iwent in and then when I had her,
they took her because she was premmed. They took out to the noserie
and intimacy her. And then Itold my husband, I said, I'd
like you to go and have alook at to look at that baby.
So they took him there. Hejust stood by the window and came by.

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So the baby's pretty. This waswaving to me. I said.
I just said to myself, theold child waiting to you anyway, And
I kept wanting to see the babyafter I had insisted. On the top
day I was having my sister,and then something suddenly woked me up.
And then I looked and I sawit caught prim by side, and I

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excitedly got up, took a look, and the first just hit me straight
wow, and immediately my heart sank. I said, no, it can
be because the picture I saw tenyears earlier just came back. Because she
was the classic kid of that.I mean she is even she was so
obviously very obvious everything she has allthe stick matter. So I burned down

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and carried the baby and I startedlooking at all these features, all the
physical matter that I was told then, and they were all there, complete,
and nobody told you nobody told me, nobody no. I called the
nurse who was there at the nursesbay, and she came. I told
her, I said, take alook at this baby. Is there anything

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something different about her? She lookedat her and said, oh, she's
very pretty. She has an angelicbase. I said no, but look
at her again. She said no, she said, there's nothing wrong with
her. I said, I thinkthe race. I think this child has
Town syndrome. Then I started showingher all the features I have seen,
the you know everything. In fact, everything was there, the fish to

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feature, the low said years,the nasal bridge, and she had very
low muscle tone, very very lowmuscle tone. Her neck was not holding
at all. And so when Ilooked at her palms, I looked at
her tools and looked at everything.They were all there. AT went to
it out to her. She lookedat me, looked at the baby,
looked at me again, and thenasked me, are you a doctor?

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I said no, I'm not,I'm a mother. She just smiled.
She didn't say yes, she didn'tsay no. And it was then I
realized that she didn't even know anythingabout it. Oh my good. I
then went into panic and I startedscreaming. I was crying and so on.
They had to send for the pedetricianand my guy Nae who because they

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were all there when you know,during the years, and then they came
and screamed me off and so on. I was screaming. In fact,
I think I really caused a lotof fury there anyway. So in all
fairness, the pedetrician had indicated inthe case note she put years and put

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a question mark, but she didn'ttell anybody wow. And she said that
I was the first parent to noticethat she had delivered a lot of them.
That because nobody asked any question,she didn't say anything. So I
told her. I said it waswrong that somebody should have should have done

(22:12):
something at least to allay the fearsof the parents instead of them going out
there and going from running from pillarto post, I'm going to all sorts
of places and so on. Itwas there. And then I made up
my mind. I said, Iwouldn't want any other parent to go through
what I went through. All thoseI can help, I will that.

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It actually took me more than fourteenyears after her death before I took up
because my other children needed to growup. Go to school. And then
when they had grown up and leftto him, I told my husband,
I said, it's now time forus to do it. And that's how
Nelsondown Foundation Night restarted. Wow.Like I said, we started group in

(22:57):
my sitting room. When I hadher, I had to return back to
the UK to seek help because Ineeded to know if she had any medical
another thing that after we found outshe didn't have any of those, and
then I was directed to join theDown Syndrome of the UK. I did,

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and they gave me a lot ofsupport resource materials that helped me,
and then they advised me. Theywere the ones who advised me and she
started one that we don't have anyin the West African countries that I needed
to start. So that's how Ithink that is a great foundation story.

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It's absolutely incredible, I'm telling you, and time is going and I'm like,
oh, this is what our listenersreally need to hear and understand.
What can happen, what does happen? The process, the grief, the

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fury, the frustration, everything,And yet you found yes, and you
found the strength to move forward andrealize that through your own journey you could
help and you can help and continueto help other people. So this mode

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we have to move along because weare running out of time. I still
want to kind of quickly in likeone minute, can you just give us
a day in life of activities Atthe foundation, we run four basic programs
in the foundation. The early medicalintervention because we have a program of medical

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checks that we give to all parentsto carry out on a regular basis.
And then we take the children fromthe age of five they live in there,
but from Beth we take them onand advise the parents and support the
parents to take care of them properlyso that they could have that basic intervention

(25:03):
that they need and they have thelove and they acceptance from the family.
And then we train them on academics, the younger ones how to read and
write. And then as they growolder, we introduce vocational skills acquisition and
social integration because that's very vital sincea lot of them are not usually accepted

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and because of the misconception and listeninggrounds of people. And then we carry
out presently, we are carrying outadvocacy, very aggressive advocacy. And now
we are concentrating on full employment forthe old Water employers and the larger society

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to know about them so that theycould be fully accepted. And your daughter
is your pa, right hand person, manager extraordinaire, so people just didn't
just think that it's just you're runningthe foundation, that your daughter also runs
it alongside with you, and youknow you've given her that space to be

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empowered, to be independent and togrow. And bringing the importance of that
into the wider public and training corporatebodies, government bodies to be open to
employing people with Down syndrome and specialneeds is huge. It needs to happen.

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People need to understand that the peoplewith Down syndrome, they want to
work, they want responsibility, theywant to be included. And I just
think that is absolute wonderful And we'vegot to move on. So this is
the point in the show, MissusMardi, where we're going to put you
on the spot. We do somethingcalled the Honest Truth, and we give
you one minute to share with ussomething about this journey that you've thought but

(27:00):
never said out loud. Not toput my daughter, my last child,
will, the one with the Downcentrum, is ready to settle down and
get married, and she talks aboutit every day and quite Frankly, I

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start worrying when I'm gone, whathappens even though her siblings are there.
I need her to settle down.Yes, And that's one thing that had
been not my you know, hadbeen my source of concern. And not
that I really worry, because Iknow whether she marries or not, she's
capable of taking care of herself andso on that everybody thrives on love and

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she needs someone who would be herlife patner. And that's what he talks
about every day. And us whatconsents me? Well, I about it.
Oh, I'm so happy you've sharedwith us. And do you know
my daughter is six. I thinkabout it all the time, you know.
So it's it's it's because we wantlove for them. We want them

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to experience companionship, so much,so much love. Yeah, thank you
so much for sharing that with us. Thank you. We have come to
the end. So um, I'dlove to continue talking with you because you
have so much knowledge, and perhapsmaybe we can get you back on our

(28:37):
next season to dive more into yourstory. But I'd like to thank you
and if you can share with ourlisteners where they can find The Down Syndrome
Foundation Nigeria on social media. Doyou have the social media handle? Can
you share it with us? Hereabook, Instagram? I think we are also
on LinkedIn. I am not theone handling the social media. If you

(29:02):
ask me none, I might not. Okay, I'm gonna cheat. You
would get to us there on Instagram. I'm gonna cheat Down Syndrome Foundation or
Facebook. We have a website andthem w down Syndrome Dog. That's the
one I can give you immediately.The other one I think Facebook or a

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down Syndrome Foundation. Yeah, nonfoundation Nigeria. So thank you once again.
I want I want to say somethingand that to go in and say.
I don't know if you will.You know the two poems that I
make it like my creed that's aWelcome to Holland and by Emily Kingsley,

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and then the other one that isby an unknown poet that is called we
call My Face might be different.And this is something I tell parents,
you need to be proud of yourchild. Just google that Welcome to Holland
welcome and it would uplift the spiritof a lot of parents out there and

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let them know that they should valuetheir children. They shouldn't think that they
are borden or responsibility. They areblessing to the family, and that's what
I want people out there to know, so they should not be sorry for
us. We don't need pity,and they don't that. Our children don't
need people to patronize them. Theywant them to be accepted because they're special.

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They have so much love and Ithink they came here to teacher us
one or true things about God's love. They really did. Thank you so
much, missus Mordifer sharing. I'dlike to thank my co host. You
can't see her beautiful smile or youcan't see her beautiful smile. I hope
we'll meet again physically sometimes, yes, I hope so alright, and I

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have been your host toy and youcan and you can find us on social
media with a handle at Special Mom'sAfrica. This has of course been Special
Mom's Africa, the podcast Real Talkon special needs parenting. Until the next
time, Bye bye bye. Forsponsorship inquiries, you can dm us at

(31:33):
Simone's Oasis on social media or sendan email to Hello at Simone's dash oasis
dot com.