March 5, 2024 • 29 mins
#kenyantrendsetters #moversandshakers #kenyaandbeyond
Having two sons across the spectrum, what's there not to know about Autism? Dr. Sylvia Moraa wears many hats but this Beauty Queen is best known for advocating for the rights of people with special needs. And she cant help it, children are at the core of it all especially those with Autism and Neurodevelopmental disabilities. Her foundation (inspired from her experience) known as "Andy Speaks 4 Special Needs Persons"; continues to spread it's wings beyond advocacy; to become a resource hub, support system for special needs families and a link to therapy centers for children with Autism. Do Join, support, donate and spread the word to help a family today. "Some disabilities are on the outside, Thank you for showing us those on the inside Sylvia! They are different, not less!" #kenyantrendsetters #moversandshakers #kenyaandbeyond #bizzhub #impactfulcontent #inspirationalvideos #kenyanssharing #goafrica #gokenya #meilovekenya
Having two sons across the spectrum, what's there not to know about Autism? Dr. Sylvia Moraa wears many hats but this Beauty Queen is best known for advocating for the rights of people with special needs. And she cant help it, children are at the core of it all especially those with Autism and Neurodevelopmental disabilities. Her foundation (inspired from her experience) known as "Andy Speaks 4 Special Needs Persons"; continues to spread it's wings beyond advocacy; to become a resource hub, support system for special needs families and a link to therapy centers for children with Autism. Do Join, support, donate and spread the word to help a family today. "Some disabilities are on the outside, Thank you for showing us those on the inside Sylvia! They are different, not less!" #kenyantrendsetters #moversandshakers #kenyaandbeyond #bizzhub #impactfulcontent #inspirationalvideos #kenyanssharing #goafrica #gokenya #meilovekenya
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:08):
A mother of three, an entrepreneur, a graphic design and brand consultant and
tanned because of life circumstances, andadvocate for special needs persons, specifically autism
and other neurodevelopmental disabilities. So thisI do through my organization which is called
Andy Speaks for Special Needs Persons Africa, which is generally advised by the challenges
(00:32):
I've had because out of my threeboys, two of them on the autism
spectrum, with comobid conditions of epilepsy, intellectual challenges and ADHD and it's just
like a whole burgame of challenges.So trying to resolve those issues. Having
worked that journey here in Kenya,I like to look at like God taking
(01:00):
you through the test, for youto have a testimony and for you to
be in a position of experience otherthan just learning about things. You know
when you learn and your experiences tototally different things, and when you go
through the fire, when you comeout, it's actually as you're a stronger
person and I feel I'm living mypurpose. So the days, of course,
(01:22):
when it was earlier, I wouldbe like God, what did I
ever do to you to deserve this? But now it makes sense because when
I'm having engagement with other parents,trying to encourage and work with them,
you get to see if I hadnot gone through all the trials and tribulations,
sleepless nights, not being able toafford a lot of the key services
(01:42):
going through governments, because back thenI could not afford it, you know,
and it was quite a tough one. And those things are the once
now that give me that point ofinformed decisions and solutions. So it's not
just SPECULI but been there, donethat, and this is how it would
be best, because equity is theone thing that I want to focus on,
(02:07):
not just generalize. It's because yousee, also on the autism spectrum,
all of them are different, andyou meet one person, that's one
person. None are like, yes, you can say one hundred percent the
things my son has, even mytwo kids are totally different, yet both
of them are on the spectrum.So it's quite a great dynamic of shifting
(02:28):
things every day and even through thephases of life when they were smaller,
and what I'm handling now that they'reteenagers and I'm still worrying now about the
next phase of when they're going tobecome young adults. And all of that.
So it's a journey of constance,rediscovery, constant learning, challenges each
and every day that needs anew youevery other time. We're actually special parents
(02:58):
because some of the things you cannever tell that you actually have. The
not even determine, I don't evenknow the right words. The resilience just
comes, the grace just comes,because what everyone asks is like, how
on notor do you get to handleall of this? Be there for other
people? Still run a business,But then you can imagine that baptism by
fire, of raising two kids onyour own for ten years when you just
(03:20):
have to like, stop up.I didn't have a life before. That
is in all honesty, and mostof us are forced to make sacrifices because
the stigma is a lot, thesegregation by the society, the stigma and
the being labeled, and the culturaland the attitude of people towards you after
(03:42):
that, so you learn to justreadjust yourself and make do with what you
have. But you know, theone thing is most of us parents will
not tell you that we need peopleto work with us. We need our
family to be more understanding, notdozens of spompel a coast x Y z
to talk on Glasia and people getsuch threats, don't come here with them
if you've refused to go and see. You know, everyone thinks they have
(04:05):
a solution. Yet if you lookat science, nobody knows the cause of
autism. To this day and age. There is a lot of hypothesis that
is there, but for certain thisis what causes it. It's not documented
anyway, it's just all the papersand whatever. So what we're made of
is just God. I believe we'rejust the reflection of God because I wouldn't
(04:28):
know I had such patients. Andthat is the greatest lesson that you learn.
Patience and you fall because we getthose days that are rock bottom days
and you have to pull yourself togetherbecause most of the time they look and
they're like, if I'm not therefor this child, me the mom,
then who else will be there?So you just have to This ability was
(04:57):
not even in my radar, youknow, like why, like you know,
even when you're praying for God,this is what I want. Nothing
like that was ever in the thingsI would think of in my you know,
thinking of my future, my gettingmy kids. I just wanted like
cute little bunny's you know, girlsthat I sail don't have it. But
(05:19):
it's a nice army man. Theylove me to bits and I just love
it. You know. It isa journey that I just expected if you
look at it, like my firstbond is a typical child, so I
just expected the same, like myother babies will come and then it just
it just overnight. It just practicallyan overnight change over because when I was
(05:42):
raising him as an infant, itwas just not the same. We were
forever in hospital lately, did Iknow that was just the beginning of the
forever, Because it is forever.It is forever. And you see,
for us, the way as otherparents are planning for Oh my kid,
we'll go to primary, we'll goto university, they'll graduate, they will
take care of me. Those areplans I can't have. I can't afford
(06:04):
to have. All I'm thinking ofright now, that we're at that point
of transit is like even when Iwas getting remarried, I told my husband,
you know, my son will bewith us probably for the rest of
his life, you know, youknow, And we're still praying for the
miracle, and we're praying for allthe interventions. We are doing to get
it to a better place that theycan. At least one of them has
(06:26):
shown a great improvement that he willbe able to, you know, live
it, be independent and move onwith his life. But then the middle
child, you're stilled in that.Okay, we can'try lead you to the
world. No, no, andand and it's and right now, even
when at thirteen and what other thirteenyear olds are doing. It breaks us
(06:46):
as parents because we wish to bedesired. You know. I was looking
at like I had insurance set outfor like college for what And I'm just
like, okay, that's not yeah, like that is what I dreamt of
when I was planning to have mybabies, you know, like you'll go
here, you will do this,you'll do this. But God had his
own plans. Yeah, and we'rejusting. Like they said, the only
(07:09):
constant thing is changed man. Soyeah, we realign with it as it
comes. Okay, we're actually onlyfive years. And if you tell anyone
and he speaks is five years,they can't believe you. And that's the
difference of when you're living your purposeand when you're just doing something for doing
(07:32):
it, you know, And becauseall the projects we do personally are God
guided. I will have an ideain the middle of the night, I
cannot explain where it comes from,and like, this is what you need
to do. Like I sleep withthe notebook next to my because sometimes God
would not allow you to sleep.You know when you hear that clarity,
(07:55):
And I know many people don't.They're people who don't believe in God anyway.
But that's higher being, that subconsciouswhatever you want to call it,
will not allow me to sleep untilthat is done. We have now streamlined.
You know, first the first fewyears is trying to gauge the space,
trying to see what's actually needed.You know, every parents' journey is
(08:15):
different. That is my experience.It's not the same as the person in
Mandera. It's not the same asthe person in Coast is not even here
in KMBO. It's not the same. And my setup having two special needs
kids is like a double training versussomeone who has one, you know,
and when we have someone with celebropolicy, it's slightly different because you see,
the neurodiverse community has the same roughlythe same challenges. So the first
(08:39):
three years will just a lot ofmore of research and focusing awareness and just
getting together doing town halls and nowthat has advice and we've been able to
realign our projects. We have somany awards because of the work we have
done. And I always say,I just don't want other moms to go
through what I went room sitting ata hospital. Bottom line is it was
(09:03):
hell, man, it was itwas hell. And sometimes I sit back
and I think of the ones whoare now having like thirty twenty year olds.
How did they do it? Iknow? But then those are the
days all you could do is juststay with them in the house and you
know, try and do everything fromthere because there was no information. So
that lack of information immediately after beingdiagnosed and that feeling of being alone is
the one thing that I want tobe there. Like if a parent gets
(09:26):
diagnosis, let's sit, let's talk. It's not a death sentence. Take
it easy. This is what youexpect, you know, have that conversation.
So we are having a training ofnow caregivers, were having a training
of public servants. We just trainedthe police officers because you seel like my
titen year old gets lost, can'ttalk, got out, Johanna amni you
(09:48):
know, and that's just whoy hecannot talk. He cannot talk, but
then he will get bitten he cannottalk to you, that I'm hungry and
goes and grabs something Wizy's you know. So looking at all those angles of
life, just trying to set thingsand align them that the community is ready
to integrate our children. Integration isimportant because they will not live in a
special world for the rest of theirlives. They have to live amongst others.
(10:11):
So awareness for both the community andtheir caregivers, and that we run
through our Neurodigest program where we doeither media engagements. We have our podcasts.
We had a TV show before thennow it's evolve to the podcast.
We have our web platform where wehost our podcast, but it's also rallied
on all other major platforms. Thenwe just have a conversation with specialist experience
(10:37):
before sharing their stories. We hearstories of the West, but we want
to hear our own African stories.When I tell you my son was not
working, he's now walking, he'snot talking. You know, how did
we do it? What changes?You know? Because our demographics, like
I mentioned earlier, are very different. So under the Neurodigest program, we
have a bit of that, thetraining, the podcast, the engagement,
and of course on the social mediawe're letting people know about information. But
(10:58):
then there is that it was totell you about autism. We can have
a whole day conversation. It's verydiverse. So in the past four years
I've been doing research and gathering information. So we have this web portal which
is called Special Needs Resource Hub.So in this resource hub we have information
(11:18):
about autism, information about sellable palicydown syndrome. When you're told what are
the things you know something as delicatedas down syndrome, that those things you
need to do within the first fewmonths when a child is born because of
the defects like the hats, theirnose and eyes and ears. Those are
things that need to be checked almostimmediately because it's a comobid where you find
like they have a hole in theirhat or something's not well functioning. So
(11:41):
just knowing and guiding for parents,just expect you'll go through depression if you're
a single parent, this is whatyou can do. There is ported training.
We have a library where now youhave books you can read on.
We have now all our shows alsoin one place, so you can listen
to the different therapists. Then wehave the resource section. What do I
(12:03):
get from government? That's under socialprotection? What's there, what's not under
education? What kind of special needseducation is it? Then we have a
directory of both the schools, thehospitals, the therapists. So if I'm
looking for a therapists to go thereand you get it listed. Then we
have also education, health and socialprotection. Then you have a community section.
(12:24):
So this is where parents now havethose small things of how do self
care, how do you handle this? How do you handle that? Which
what's app group? Which Facebook groupcan I join? For whichever? Now
disability that we have because we're focusingmore on the invisible disabilities. Then we
have the community section now for theneurodivergent themselves, because you know, when
they grow up, who's like me? So we have that place of this
(12:46):
is where you can And then wehave a corner called Afro Afro Heroes.
You know we're talking about stiff jobs, We're talking about the elon mask,
these neurodivergens who have done so wellin the West, what about our very
own in Africa. So we havea corner for that. We celebrate the
ones who have achieved so that youknow, it will encourage that, mamma.
(13:07):
That's it's not a death sentence whenthey start from page one, you
know, going to this other side. Then apart from that, they're assistive
devices like for early interventions that areelectronic. So we put now like if
you want to teach your child's speech, you can download this up. So
yes, we have gadgets, butthen don't put your child in front of
a TIV just for the sake ofit. Right, these are the things
(13:28):
they can be doing. These arethe things programs and and and things that
they can engage. Then apart fromthat, now we have an e portal
for a shop where we have variouspromo materials for just raising awareness and also
assistive devices. That is our otheraspects at and the speaks we are trying
to make our uh the special assistivedevices that people take for granted that are
very important for our children, likea child who bangs their heads, right,
(13:52):
you know there is that they arethose ones who have issues with loud
hearing. Those ear maps where doyou get them? So we're trying to
see if we can bring them inand also get some locally and just one
place where you know, I needa fidgeting thing, I need something for
sensory So we have that shop onlinewhere you can just place your order and
get it. You know, that'sactually a sad space. It makes me
(14:22):
sad that you find people are veryready to give to other things, but
for our children, we actually don't. I've self funded a lot of it
and crowdfunding with friends, but youknow, you can only ask for so
long. You know, people cancome through, but we still try their
sponsors who work with us also,but then some are falling off in this
(14:43):
time. So we're actually at apoint where are looking for people who can
help us move to that next levelof getting it, you know, properly
done. Because people don't understand thisnew people are calling it emerging disabiled.
They're not imagining they've always been there, you know. But you see,
in visible disabilities is something that peopleare not. It's not your every day
(15:05):
But to what we're saying, ifyou look at the US only in the
past ten years, autism rate hasgone up by three hundred and sixteen percent
in ten years. Yes, soif you project that means we're headed somewhere
where we will be running health andskelter. How about we invest in doing
things right now. And that's wherenow you find our project. Where we
were fighting for policy change, we'refighting for inclusion in all aspects, including
(15:30):
caregivers, so that they're able tosupport their children. So that people talk
of disability being people with disability beingpoor, it's not. It's just very
expensive to raise a child in thisspace. Because you can imagine you have
your normal budget. For us,we have the therapist on top of it,
we have medication on top of it, we have the assistive devices to
(15:50):
just make them calmer. You know, our schools is special school. Our
doctors you add now the the neuralsand the nutritionists and it is so,
but it is like one hundred andfifty everyone else. Yet we cannot have
the freedom of working and sustaining workbecause like a parent came and said,
like, I've been given an ultimatumbecause I'm taking ten to take my child
(16:12):
to therapy. But if I don'ttake my child to therapy, that means
I will not be able to forthat child to be in dependent so that
I can work better. You knowthat when we're talking about you see how
when it was all maternity leave whenit was about giving birth and lactation rooms.
Because everyone is affected, everyone isokay with it. But because we
(16:33):
are as small my majority, youfind you're not as important as we can
replace you, which is very verysad considering. You'll find also that many
are sole bread veinners and that iswhat advice is now. Our next project,
which is the therapy center. Sowe've been building therapy centers in the
school and this is something we're hopingthat the government can be able to take
(16:53):
up because you see, if wehave the centers the same way you have
pee, you have a playing field. It's a basic need for the special
needs and just having the right youknow, set up. We pay extra
in schools. I don't want toget into costs. But anyways, that
therapy center, but we have nowopened one for learners, especially like ADHD
learners and autism. That is agap we have here in Kenya. So
(17:15):
we have opened one called Nexcesus Therapywhere it is set for a nistic child.
Yes, we others can come.We have the equipment, but for
an artistic child it is bliss becausewe have the sensory integration that is one
of the greatest challenges the Sensory Integrationroom, which we are based it with
the UK standards, so we've hadto ensure every item that's needed is there.
(17:40):
We have the occupational therapy one andthen we have a sensorygim proper jam
yes, and then we have thesensorygim and of course we have now the
speech therapy and then we have assessmentand psychosocial support at least once a week,
so that those are services that areavailable because it's things that you can
and just easily get. So whatwe want is so that your child doesn't
(18:03):
go here today tomorrow there if youcome and their child is comfortable and knows
this is like another home, butI'm having fun while I'm being helped out.
So if you come, you see, it's just like a for any
typical person who be like, butthis is a play area, but they
exactly this as specific as in thosethings do very specific things. So like
when we're making partices, someone islike, yes, something are not funny.
(18:27):
You know, they don't get it. But our children have a lot
of like fine motor skills that needto be built for them to gain their
independence. Then we have the clothingline where we are making and custom making
clothes for specialists children so that theystop struggling with all this thing of buttoning
and complications in life. They haveenough stress man, So for anyone who
(18:49):
wants like uniform customized that to fitthe capabilities of their child, we are
going to be offering that also.Then we have the Ne're a Caravan,
which is we do medical camps.There is these things like dental and this
we get through volunteer organizations like hospitalscomes and offer so we usually do it
(19:10):
during the Ride for Autism Awareness,which we do every That is our actually
that's our flagship project that has adviseda lot because we've been going across We've
done it in Ethiopia and Nigeria,South Africa, Kenya. We've done i
think like twenty counties, you know, across twenty counties, just getting the
information on ground and knowing what isgoing on on the ground. So that's
(19:30):
how you find that they all interlink. So like even getting disability, the
disability certificate, the disability card,it's very difficult for us because you need
more doctors than your typical disability.So we bring the doctors together and then
we do it. And the onethat actually made my day is when we
did it at a school. Likein the school setup, parents come,
(19:52):
the parents line up, the childis still in school, you know,
so I just maybe this I gobring my child. Then you see what
this one was helping us with.The child is not being misdiagnosed because you've
changed their environment, because they've hadto sit for so long, because they
have been made amongst strangers, becausethe social aspect of it is one of
the things they struggle with, youknow. So if a child comes as
(20:14):
they are, then you're able togive the right diagnosis you get. So
such small, small things that maybe taken for granted are the ones that
we take the extra mile to seeyou can support us financially so that we
can have the sustainability and go andmake these projects kick off. See like
(20:37):
just leveling them up so that it'smore accessible to like someone in Mandera because
you see, like our therapy center, we would like if someone like,
for example, allow me to namenames like someone like Toyota Issuzu. You
know, the vehicle manufacturing comes onboard and helps us to get that mobile
bus so that when we're going likenow this year we're doing the right for
artisan too Garisa, so you canimage and the bikes need fuel, you
(21:00):
know, we need to feed them. We need to give like food donations
in Garrisa and we do. Weare taking learning support materials. So if
you go to our site you caneven I'm buying this for Garrisa. There
is the donate paton. You candonate through there. Our lines, our
socials are always open and reresponse ourWhatsApp group. So if you can even
if you want to support in kindas an organization or in cash as an
(21:22):
individual, or you say I'll beoffering I'll be supporting therapy for one child
at the therapy center. You seeyou've saved someone to access it. So
there are very many ways you cancome through. But then those are our
dreams and go someone in it.Even offering your skills. Let's say like
now I'm not a HRD person,but then I need sometimes you know that
(21:45):
that's second eye of an a HRperson, you know, at least for
like for our books, we havea company that does that as their is
as CSR. So big up tolike Jeff's out for that. You know,
this is a friend was like Ineed to get my I'm not especially
say that I know what I haveto do. I can't afford it,
but I need us to just helpthe rest of you know, the community,
(22:08):
and they come through, so allthose things in running an office,
if you feel you can even giveus, like especially now we're struggling.
We have a lot of it needsin the terms of social media and all
that, because as much as Iam growing it, that was graphic design
and all that, but I can't. So you can say, like we
can donate one staff, let's saytwice a week, you know, to
(22:30):
just help us with that. Sowe line it up so the very many
ways actually people can come through andhelp. Yeah, I was at twenty
four, Mama dera. That hasnever been me. I would try,
but I try better now because wedon't have to wear our problems. And
(22:52):
one thing we need to remember selfcare is very important as mothers. Yeah,
you can't get from an empty cup. Yes, we're going through a
lot, but take time. Andthis would be a call both to even
neighbors, support, friends, familysupport, like try and sleep, try
and take one day for me.It's not easy to get good support in
any wise or even family understanding.But just have that conversation because sometimes it's
(23:17):
so hard to have that conversation.Talk to your community. Edu get your
community so that it is comfortable.It's been rough even moving. You have
to move because that neighbor is alwaysat your door. Because your child is
forever screaming it is see but don'tforget you. Once a month, go
to the salon, have your hairdone. Come that It makes the difference,
(23:41):
you know, and and that andyour child feels it because when you're
forever over stress, they also feelit. And I know from experience when
I had not put myself together andmy child would be the one bearing the
brand because I will fast so muchstress outside I come home, they want
my attention and I'm like, I'mtired, you know, let me alone.
(24:04):
So when you're coming from work thattransition, sit in my car by
the way and just take five tolive, switch off work, be mummy.
Then when they go to bed,now I pick up now, covering
up everything else. I take atleast one day to just cry and accept
that this is hard and this ispainful, and I want to be loved
(24:25):
and I want a husband who finallyGod sent because everyone was telling you will
Mau. You know that is theAfrican culture. You have boys. You
think a man can take three childrenthat are not his. But you see,
God is an extraordinary person. Hegot me one from Naijau. All
the way you will you will,You'll be disgruntled and then you're always asked
(24:56):
who in your family has it?So there is that captain that there is
African let's be built. Africans inus always bring that up of who who
to blame? We're always looking forsomeone to blame and men always walk out.
You know, it might be thatis the excuse that's remaining on top
of everything else. But I thinkfor me, I found it easy.
(25:17):
Sorry to say that, now Ihave one less problem to think of.
Wow, no, it is.It is draining. It was draining.
I stayed single for what twelve years, just focusing on my children, and
I sacrificed a lot to just bethere. That days. I couldn't afford
a three square meal. I wasdoing one meal a day, can you
(25:40):
imagine? So I had to waitfor fair to drop to twenty bo because
I could have fifty book at thebeginning of the day and that was it.
And I have to make it work, so you have to make a
lot of adjustments. And then whenI tried to go back into the DZC,
it was like baptism by fire outlike things had changed after ten years
my friends. But then it helpedme relyarn and what I'm looking for,
(26:00):
what I don't want, and Ialso accepting your child and being able to
boldly say I'm a mom of threelate one when high higher like okay,
yes I'm a mother. I havethree kids, two of them have ass
and nanana making it a couiter conversation. So en aside, my friend,
let's not waste each other's time.Now, that was just like I refuse
(26:27):
for four years. He was pursuingme for four years, so I said
we can be friends. So wewere friends, like I could call and
we talked for like an hour.I'm going through this and he would listen.
He's a very good listener, andif we get something, he would
call me. So it started withfriendship and then grew now to this love
story that we have. But thenone day when he was in Nairob before
(26:47):
a meeting, and I was like, yeah, I come over and see
what I keep telling you about beinga specially its parents, then you can
continue telling me if you really reallywant this, And then I was God,
I would have it. It wasthe worst time. I was like,
but but this is it. Youcan leave if you you know that
story you want, let's just endit now, you know. But he
stayed, He stayed, He stayedas in I was just like, you
(27:11):
went through this storm with me andstill stayed and still loved them. And
do you know who made me makethe last decision that this is the man?
My autistic child is the one who'smore severe because he is very antisocial,
not antisoy, but that's their nature. But when this man walked into
my house, my son went likeday two alimh cam Connor heavy and I
(27:33):
knew this is the one that wasit. And it was not a mistake
because now they're just inseparable, basicallyin a nutshell. That is Sylvie and
that is Anti speased. And Iwould like to call on guys who would
(27:55):
like to be friends of Anti Speaks, support our projects. They're all listed
on our website and that is wwwdot anti Speaks number four Special Needs Persons
dot RG. You can donate.There is donate button, There is the
mus channel that you can. Youcan dm us on our socials on Twitter
it's Anti Speaks, the number fourig Andy Speaks, or we have our
(28:17):
Facebook page and the speaks for SpecialistPersons Africa. And we have the Autism
Ride coming up in April. We'reriding from Nairobi to Garrisa and then we
have a team leaving Kilifi to Garrisa. It's gonna be mad fans. So
if you're a bike owner, joinus for this exhilarating two days drive,
stopping and raising awareness in all thecounties in between and be part of the
difference because this year we want toembrace difference and be the voice for the
(28:41):
voiceless. Well, we hope you'refeeling inspired and motivated to either change your
community or to keep your hustle going. Either way, we would like to
hear from you on our social mediaplatforms as at Trendsetters on K twenty four.
Thanks for watching this episode. I'mShiko Kaitani. Will see you next week.
A mother of three, an entrepreneur, a graphic design and brand consultant and
tanned because of life circumstances, andadvocate for special needs persons, specifically autism
and other neurodevelopmental disabilities. So thisI do through my organization which is called
Andy Speaks for Special Needs Persons Africa, which is generally advised by the challenges
(00:32):
I've had because out of my threeboys, two of them on the autism
spectrum, with comobid conditions of epilepsy, intellectual challenges and ADHD and it's just
like a whole burgame of challenges.So trying to resolve those issues. Having
worked that journey here in Kenya,I like to look at like God taking
(01:00):
you through the test, for youto have a testimony and for you to
be in a position of experience otherthan just learning about things. You know
when you learn and your experiences tototally different things, and when you go
through the fire, when you comeout, it's actually as you're a stronger
person and I feel I'm living mypurpose. So the days, of course,
(01:22):
when it was earlier, I wouldbe like God, what did I
ever do to you to deserve this? But now it makes sense because when
I'm having engagement with other parents,trying to encourage and work with them,
you get to see if I hadnot gone through all the trials and tribulations,
sleepless nights, not being able toafford a lot of the key services
(01:42):
going through governments, because back thenI could not afford it, you know,
and it was quite a tough one. And those things are the once
now that give me that point ofinformed decisions and solutions. So it's not
just SPECULI but been there, donethat, and this is how it would
be best, because equity is theone thing that I want to focus on,
(02:07):
not just generalize. It's because yousee, also on the autism spectrum,
all of them are different, andyou meet one person, that's one
person. None are like, yes, you can say one hundred percent the
things my son has, even mytwo kids are totally different, yet both
of them are on the spectrum.So it's quite a great dynamic of shifting
(02:28):
things every day and even through thephases of life when they were smaller,
and what I'm handling now that they'reteenagers and I'm still worrying now about the
next phase of when they're going tobecome young adults. And all of that.
So it's a journey of constance,rediscovery, constant learning, challenges each
and every day that needs anew youevery other time. We're actually special parents
(02:58):
because some of the things you cannever tell that you actually have. The
not even determine, I don't evenknow the right words. The resilience just
comes, the grace just comes,because what everyone asks is like, how
on notor do you get to handleall of this? Be there for other
people? Still run a business,But then you can imagine that baptism by
fire, of raising two kids onyour own for ten years when you just
(03:20):
have to like, stop up.I didn't have a life before. That
is in all honesty, and mostof us are forced to make sacrifices because
the stigma is a lot, thesegregation by the society, the stigma and
the being labeled, and the culturaland the attitude of people towards you after
(03:42):
that, so you learn to justreadjust yourself and make do with what you
have. But you know, theone thing is most of us parents will
not tell you that we need peopleto work with us. We need our
family to be more understanding, notdozens of spompel a coast x Y z
to talk on Glasia and people getsuch threats, don't come here with them
if you've refused to go and see. You know, everyone thinks they have
(04:05):
a solution. Yet if you lookat science, nobody knows the cause of
autism. To this day and age. There is a lot of hypothesis that
is there, but for certain thisis what causes it. It's not documented
anyway, it's just all the papersand whatever. So what we're made of
is just God. I believe we'rejust the reflection of God because I wouldn't
(04:28):
know I had such patients. Andthat is the greatest lesson that you learn.
Patience and you fall because we getthose days that are rock bottom days
and you have to pull yourself togetherbecause most of the time they look and
they're like, if I'm not therefor this child, me the mom,
then who else will be there?So you just have to This ability was
(04:57):
not even in my radar, youknow, like why, like you know,
even when you're praying for God,this is what I want. Nothing
like that was ever in the thingsI would think of in my you know,
thinking of my future, my gettingmy kids. I just wanted like
cute little bunny's you know, girlsthat I sail don't have it. But
(05:19):
it's a nice army man. Theylove me to bits and I just love
it. You know. It isa journey that I just expected if you
look at it, like my firstbond is a typical child, so I
just expected the same, like myother babies will come and then it just
it just overnight. It just practicallyan overnight change over because when I was
(05:42):
raising him as an infant, itwas just not the same. We were
forever in hospital lately, did Iknow that was just the beginning of the
forever, Because it is forever.It is forever. And you see,
for us, the way as otherparents are planning for Oh my kid,
we'll go to primary, we'll goto university, they'll graduate, they will
take care of me. Those areplans I can't have. I can't afford
(06:04):
to have. All I'm thinking ofright now, that we're at that point
of transit is like even when Iwas getting remarried, I told my husband,
you know, my son will bewith us probably for the rest of
his life, you know, youknow, And we're still praying for the
miracle, and we're praying for allthe interventions. We are doing to get
it to a better place that theycan. At least one of them has
(06:26):
shown a great improvement that he willbe able to, you know, live
it, be independent and move onwith his life. But then the middle
child, you're stilled in that.Okay, we can'try lead you to the
world. No, no, andand and it's and right now, even
when at thirteen and what other thirteenyear olds are doing. It breaks us
(06:46):
as parents because we wish to bedesired. You know. I was looking
at like I had insurance set outfor like college for what And I'm just
like, okay, that's not yeah, like that is what I dreamt of
when I was planning to have mybabies, you know, like you'll go
here, you will do this,you'll do this. But God had his
own plans. Yeah, and we'rejusting. Like they said, the only
(07:09):
constant thing is changed man. Soyeah, we realign with it as it
comes. Okay, we're actually onlyfive years. And if you tell anyone
and he speaks is five years,they can't believe you. And that's the
difference of when you're living your purposeand when you're just doing something for doing
(07:32):
it, you know, And becauseall the projects we do personally are God
guided. I will have an ideain the middle of the night, I
cannot explain where it comes from,and like, this is what you need
to do. Like I sleep withthe notebook next to my because sometimes God
would not allow you to sleep.You know when you hear that clarity,
(07:55):
And I know many people don't.They're people who don't believe in God anyway.
But that's higher being, that subconsciouswhatever you want to call it,
will not allow me to sleep untilthat is done. We have now streamlined.
You know, first the first fewyears is trying to gauge the space,
trying to see what's actually needed.You know, every parents' journey is
(08:15):
different. That is my experience.It's not the same as the person in
Mandera. It's not the same asthe person in Coast is not even here
in KMBO. It's not the same. And my setup having two special needs
kids is like a double training versussomeone who has one, you know,
and when we have someone with celebropolicy, it's slightly different because you see,
the neurodiverse community has the same roughlythe same challenges. So the first
(08:39):
three years will just a lot ofmore of research and focusing awareness and just
getting together doing town halls and nowthat has advice and we've been able to
realign our projects. We have somany awards because of the work we have
done. And I always say,I just don't want other moms to go
through what I went room sitting ata hospital. Bottom line is it was
(09:03):
hell, man, it was itwas hell. And sometimes I sit back
and I think of the ones whoare now having like thirty twenty year olds.
How did they do it? Iknow? But then those are the
days all you could do is juststay with them in the house and you
know, try and do everything fromthere because there was no information. So
that lack of information immediately after beingdiagnosed and that feeling of being alone is
the one thing that I want tobe there. Like if a parent gets
(09:26):
diagnosis, let's sit, let's talk. It's not a death sentence. Take
it easy. This is what youexpect, you know, have that conversation.
So we are having a training ofnow caregivers, were having a training
of public servants. We just trainedthe police officers because you seel like my
titen year old gets lost, can'ttalk, got out, Johanna amni you
(09:48):
know, and that's just whoy hecannot talk. He cannot talk, but
then he will get bitten he cannottalk to you, that I'm hungry and
goes and grabs something Wizy's you know. So looking at all those angles of
life, just trying to set thingsand align them that the community is ready
to integrate our children. Integration isimportant because they will not live in a
special world for the rest of theirlives. They have to live amongst others.
(10:11):
So awareness for both the community andtheir caregivers, and that we run
through our Neurodigest program where we doeither media engagements. We have our podcasts.
We had a TV show before thennow it's evolve to the podcast.
We have our web platform where wehost our podcast, but it's also rallied
on all other major platforms. Thenwe just have a conversation with specialist experience
(10:37):
before sharing their stories. We hearstories of the West, but we want
to hear our own African stories.When I tell you my son was not
working, he's now walking, he'snot talking. You know, how did
we do it? What changes?You know? Because our demographics, like
I mentioned earlier, are very different. So under the Neurodigest program, we
have a bit of that, thetraining, the podcast, the engagement,
and of course on the social mediawe're letting people know about information. But
(10:58):
then there is that it was totell you about autism. We can have
a whole day conversation. It's verydiverse. So in the past four years
I've been doing research and gathering information. So we have this web portal which
is called Special Needs Resource Hub.So in this resource hub we have information
(11:18):
about autism, information about sellable palicydown syndrome. When you're told what are
the things you know something as delicatedas down syndrome, that those things you
need to do within the first fewmonths when a child is born because of
the defects like the hats, theirnose and eyes and ears. Those are
things that need to be checked almostimmediately because it's a comobid where you find
like they have a hole in theirhat or something's not well functioning. So
(11:41):
just knowing and guiding for parents,just expect you'll go through depression if you're
a single parent, this is whatyou can do. There is ported training.
We have a library where now youhave books you can read on.
We have now all our shows alsoin one place, so you can listen
to the different therapists. Then wehave the resource section. What do I
(12:03):
get from government? That's under socialprotection? What's there, what's not under
education? What kind of special needseducation is it? Then we have a
directory of both the schools, thehospitals, the therapists. So if I'm
looking for a therapists to go thereand you get it listed. Then we
have also education, health and socialprotection. Then you have a community section.
(12:24):
So this is where parents now havethose small things of how do self
care, how do you handle this? How do you handle that? Which
what's app group? Which Facebook groupcan I join? For whichever? Now
disability that we have because we're focusingmore on the invisible disabilities. Then we
have the community section now for theneurodivergent themselves, because you know, when
they grow up, who's like me? So we have that place of this
(12:46):
is where you can And then wehave a corner called Afro Afro Heroes.
You know we're talking about stiff jobs, We're talking about the elon mask,
these neurodivergens who have done so wellin the West, what about our very
own in Africa. So we havea corner for that. We celebrate the
ones who have achieved so that youknow, it will encourage that, mamma.
(13:07):
That's it's not a death sentence whenthey start from page one, you
know, going to this other side. Then apart from that, they're assistive
devices like for early interventions that areelectronic. So we put now like if
you want to teach your child's speech, you can download this up. So
yes, we have gadgets, butthen don't put your child in front of
a TIV just for the sake ofit. Right, these are the things
(13:28):
they can be doing. These arethe things programs and and and things that
they can engage. Then apart fromthat, now we have an e portal
for a shop where we have variouspromo materials for just raising awareness and also
assistive devices. That is our otheraspects at and the speaks we are trying
to make our uh the special assistivedevices that people take for granted that are
very important for our children, likea child who bangs their heads, right,
(13:52):
you know there is that they arethose ones who have issues with loud
hearing. Those ear maps where doyou get them? So we're trying to
see if we can bring them inand also get some locally and just one
place where you know, I needa fidgeting thing, I need something for
sensory So we have that shop onlinewhere you can just place your order and
get it. You know, that'sactually a sad space. It makes me
(14:22):
sad that you find people are veryready to give to other things, but
for our children, we actually don't. I've self funded a lot of it
and crowdfunding with friends, but youknow, you can only ask for so
long. You know, people cancome through, but we still try their
sponsors who work with us also,but then some are falling off in this
(14:43):
time. So we're actually at apoint where are looking for people who can
help us move to that next levelof getting it, you know, properly
done. Because people don't understand thisnew people are calling it emerging disabiled.
They're not imagining they've always been there, you know. But you see,
in visible disabilities is something that peopleare not. It's not your every day
(15:05):
But to what we're saying, ifyou look at the US only in the
past ten years, autism rate hasgone up by three hundred and sixteen percent
in ten years. Yes, soif you project that means we're headed somewhere
where we will be running health andskelter. How about we invest in doing
things right now. And that's wherenow you find our project. Where we
were fighting for policy change, we'refighting for inclusion in all aspects, including
(15:30):
caregivers, so that they're able tosupport their children. So that people talk
of disability being people with disability beingpoor, it's not. It's just very
expensive to raise a child in thisspace. Because you can imagine you have
your normal budget. For us,we have the therapist on top of it,
we have medication on top of it, we have the assistive devices to
(15:50):
just make them calmer. You know, our schools is special school. Our
doctors you add now the the neuralsand the nutritionists and it is so,
but it is like one hundred andfifty everyone else. Yet we cannot have
the freedom of working and sustaining workbecause like a parent came and said,
like, I've been given an ultimatumbecause I'm taking ten to take my child
(16:12):
to therapy. But if I don'ttake my child to therapy, that means
I will not be able to forthat child to be in dependent so that
I can work better. You knowthat when we're talking about you see how
when it was all maternity leave whenit was about giving birth and lactation rooms.
Because everyone is affected, everyone isokay with it. But because we
(16:33):
are as small my majority, youfind you're not as important as we can
replace you, which is very verysad considering. You'll find also that many
are sole bread veinners and that iswhat advice is now. Our next project,
which is the therapy center. Sowe've been building therapy centers in the
school and this is something we're hopingthat the government can be able to take
(16:53):
up because you see, if wehave the centers the same way you have
pee, you have a playing field. It's a basic need for the special
needs and just having the right youknow, set up. We pay extra
in schools. I don't want toget into costs. But anyways, that
therapy center, but we have nowopened one for learners, especially like ADHD
learners and autism. That is agap we have here in Kenya. So
(17:15):
we have opened one called Nexcesus Therapywhere it is set for a nistic child.
Yes, we others can come.We have the equipment, but for
an artistic child it is bliss becausewe have the sensory integration that is one
of the greatest challenges the Sensory Integrationroom, which we are based it with
the UK standards, so we've hadto ensure every item that's needed is there.
(17:40):
We have the occupational therapy one andthen we have a sensorygim proper jam
yes, and then we have thesensorygim and of course we have now the
speech therapy and then we have assessmentand psychosocial support at least once a week,
so that those are services that areavailable because it's things that you can
and just easily get. So whatwe want is so that your child doesn't
(18:03):
go here today tomorrow there if youcome and their child is comfortable and knows
this is like another home, butI'm having fun while I'm being helped out.
So if you come, you see, it's just like a for any
typical person who be like, butthis is a play area, but they
exactly this as specific as in thosethings do very specific things. So like
when we're making partices, someone islike, yes, something are not funny.
(18:27):
You know, they don't get it. But our children have a lot
of like fine motor skills that needto be built for them to gain their
independence. Then we have the clothingline where we are making and custom making
clothes for specialists children so that theystop struggling with all this thing of buttoning
and complications in life. They haveenough stress man, So for anyone who
(18:49):
wants like uniform customized that to fitthe capabilities of their child, we are
going to be offering that also.Then we have the Ne're a Caravan,
which is we do medical camps.There is these things like dental and this
we get through volunteer organizations like hospitalscomes and offer so we usually do it
(19:10):
during the Ride for Autism Awareness,which we do every That is our actually
that's our flagship project that has adviseda lot because we've been going across We've
done it in Ethiopia and Nigeria,South Africa, Kenya. We've done i
think like twenty counties, you know, across twenty counties, just getting the
information on ground and knowing what isgoing on on the ground. So that's
(19:30):
how you find that they all interlink. So like even getting disability, the
disability certificate, the disability card,it's very difficult for us because you need
more doctors than your typical disability.So we bring the doctors together and then
we do it. And the onethat actually made my day is when we
did it at a school. Likein the school setup, parents come,
(19:52):
the parents line up, the childis still in school, you know,
so I just maybe this I gobring my child. Then you see what
this one was helping us with.The child is not being misdiagnosed because you've
changed their environment, because they've hadto sit for so long, because they
have been made amongst strangers, becausethe social aspect of it is one of
the things they struggle with, youknow. So if a child comes as
(20:14):
they are, then you're able togive the right diagnosis you get. So
such small, small things that maybe taken for granted are the ones that
we take the extra mile to seeyou can support us financially so that we
can have the sustainability and go andmake these projects kick off. See like
(20:37):
just leveling them up so that it'smore accessible to like someone in Mandera because
you see, like our therapy center, we would like if someone like,
for example, allow me to namenames like someone like Toyota Issuzu. You
know, the vehicle manufacturing comes onboard and helps us to get that mobile
bus so that when we're going likenow this year we're doing the right for
artisan too Garisa, so you canimage and the bikes need fuel, you
(21:00):
know, we need to feed them. We need to give like food donations
in Garrisa and we do. Weare taking learning support materials. So if
you go to our site you caneven I'm buying this for Garrisa. There
is the donate paton. You candonate through there. Our lines, our
socials are always open and reresponse ourWhatsApp group. So if you can even
if you want to support in kindas an organization or in cash as an
(21:22):
individual, or you say I'll beoffering I'll be supporting therapy for one child
at the therapy center. You seeyou've saved someone to access it. So
there are very many ways you cancome through. But then those are our
dreams and go someone in it.Even offering your skills. Let's say like
now I'm not a HRD person,but then I need sometimes you know that
(21:45):
that's second eye of an a HRperson, you know, at least for
like for our books, we havea company that does that as their is
as CSR. So big up tolike Jeff's out for that. You know,
this is a friend was like Ineed to get my I'm not especially
say that I know what I haveto do. I can't afford it,
but I need us to just helpthe rest of you know, the community,
(22:08):
and they come through, so allthose things in running an office,
if you feel you can even giveus, like especially now we're struggling.
We have a lot of it needsin the terms of social media and all
that, because as much as Iam growing it, that was graphic design
and all that, but I can't. So you can say, like we
can donate one staff, let's saytwice a week, you know, to
(22:30):
just help us with that. Sowe line it up so the very many
ways actually people can come through andhelp. Yeah, I was at twenty
four, Mama dera. That hasnever been me. I would try,
but I try better now because wedon't have to wear our problems. And
(22:52):
one thing we need to remember selfcare is very important as mothers. Yeah,
you can't get from an empty cup. Yes, we're going through a
lot, but take time. Andthis would be a call both to even
neighbors, support, friends, familysupport, like try and sleep, try
and take one day for me.It's not easy to get good support in
any wise or even family understanding.But just have that conversation because sometimes it's
(23:17):
so hard to have that conversation.Talk to your community. Edu get your
community so that it is comfortable.It's been rough even moving. You have
to move because that neighbor is alwaysat your door. Because your child is
forever screaming it is see but don'tforget you. Once a month, go
to the salon, have your hairdone. Come that It makes the difference,
(23:41):
you know, and and that andyour child feels it because when you're
forever over stress, they also feelit. And I know from experience when
I had not put myself together andmy child would be the one bearing the
brand because I will fast so muchstress outside I come home, they want
my attention and I'm like, I'mtired, you know, let me alone.
(24:04):
So when you're coming from work thattransition, sit in my car by
the way and just take five tolive, switch off work, be mummy.
Then when they go to bed,now I pick up now, covering
up everything else. I take atleast one day to just cry and accept
that this is hard and this ispainful, and I want to be loved
(24:25):
and I want a husband who finallyGod sent because everyone was telling you will
Mau. You know that is theAfrican culture. You have boys. You
think a man can take three childrenthat are not his. But you see,
God is an extraordinary person. Hegot me one from Naijau. All
the way you will you will,You'll be disgruntled and then you're always asked
(24:56):
who in your family has it?So there is that captain that there is
African let's be built. Africans inus always bring that up of who who
to blame? We're always looking forsomeone to blame and men always walk out.
You know, it might be thatis the excuse that's remaining on top
of everything else. But I thinkfor me, I found it easy.
(25:17):
Sorry to say that, now Ihave one less problem to think of.
Wow, no, it is.It is draining. It was draining.
I stayed single for what twelve years, just focusing on my children, and
I sacrificed a lot to just bethere. That days. I couldn't afford
a three square meal. I wasdoing one meal a day, can you
(25:40):
imagine? So I had to waitfor fair to drop to twenty bo because
I could have fifty book at thebeginning of the day and that was it.
And I have to make it work, so you have to make a
lot of adjustments. And then whenI tried to go back into the DZC,
it was like baptism by fire outlike things had changed after ten years
my friends. But then it helpedme relyarn and what I'm looking for,
(26:00):
what I don't want, and Ialso accepting your child and being able to
boldly say I'm a mom of threelate one when high higher like okay,
yes I'm a mother. I havethree kids, two of them have ass
and nanana making it a couiter conversation. So en aside, my friend,
let's not waste each other's time.Now, that was just like I refuse
(26:27):
for four years. He was pursuingme for four years, so I said
we can be friends. So wewere friends, like I could call and
we talked for like an hour.I'm going through this and he would listen.
He's a very good listener, andif we get something, he would
call me. So it started withfriendship and then grew now to this love
story that we have. But thenone day when he was in Nairob before
(26:47):
a meeting, and I was like, yeah, I come over and see
what I keep telling you about beinga specially its parents, then you can
continue telling me if you really reallywant this, And then I was God,
I would have it. It wasthe worst time. I was like,
but but this is it. Youcan leave if you you know that
story you want, let's just endit now, you know. But he
stayed, He stayed, He stayedas in I was just like, you
(27:11):
went through this storm with me andstill stayed and still loved them. And
do you know who made me makethe last decision that this is the man?
My autistic child is the one who'smore severe because he is very antisocial,
not antisoy, but that's their nature. But when this man walked into
my house, my son went likeday two alimh cam Connor heavy and I
(27:33):
knew this is the one that wasit. And it was not a mistake
because now they're just inseparable, basicallyin a nutshell. That is Sylvie and
that is Anti speased. And Iwould like to call on guys who would
(27:55):
like to be friends of Anti Speaks, support our projects. They're all listed
on our website and that is wwwdot anti Speaks number four Special Needs Persons
dot RG. You can donate.There is donate button, There is the
mus channel that you can. Youcan dm us on our socials on Twitter
it's Anti Speaks, the number fourig Andy Speaks, or we have our
(28:17):
Facebook page and the speaks for SpecialistPersons Africa. And we have the Autism
Ride coming up in April. We'reriding from Nairobi to Garrisa and then we
have a team leaving Kilifi to Garrisa. It's gonna be mad fans. So
if you're a bike owner, joinus for this exhilarating two days drive,
stopping and raising awareness in all thecounties in between and be part of the
difference because this year we want toembrace difference and be the voice for the
(28:41):
voiceless. Well, we hope you'refeeling inspired and motivated to either change your
community or to keep your hustle going. Either way, we would like to
hear from you on our social mediaplatforms as at Trendsetters on K twenty four.
Thanks for watching this episode. I'mShiko Kaitani. Will see you next week.
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On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!