right now we're about to have a very important conversation i'll be speaking to irene matendra
who happens to be the mother of a very passionate driven um autistic advocate
zekuande matendra he happens to be the founder actually of the sequined foundation
which he basically started in aiming to get as many non-speaking autistics in south africa
and beyond on a s2c program which will enable them to speak and express themselves in order
to actually reach their full potential good morning irene how are you uh good morning
traveling and thank you very much and good morning to your listeners as well thank you
so much for joining us this morning so irene you are the parent of zikoyende who is absolutely
passionate he is driven um i love the fact that he started this foundation but let's quickly
just start here how would you advise parents you know about raising children with autism
okay um so firstly and traveling the issue that we face with parents when we realize that our kids
are autistic it's a guilt it's a resentment is disappointment and denial because everybody wants
a perfect bundle of joy so firstly i want to say to all parents please note that you have
done nothing wrong in having a child that is autistic it's absolutely nothing wrong and it's
a condition as my my son calls it a body-mind disconnect he says their minds are very much
intact but their bodies are failing them now how would i have advised parents one i would say
please seek medical attention so that the child can be diagnosed properly then you know what
you're dealing with and then secondly i would say that um it is important to establish a routine
for a child as easy as possible i found that um autistics drive a thrive better
in a very structured environment so they need a predictability in their life they need to know
when they're going to bed when they wake up what is happening so on and so on if
you throw them into this chaotic world that we live in they become very much vulnerable
they become frustrated and and then what you might experience um a sense of anger
and again please presume competence because we are dealing with highly gifted and intelligent people
here who are clear in terms of what they want they want to be respected they want to be treated with
with dignity and another thing that i want to also indicate is that as a parent as we navigate and
go around and find out what would work best for our children i would like to encourage
all the parents to reach out to the non-speaking autistics these are the real aspects in this field
they leave the world of autism they can tell us better and it's not only that one day you have got
many of these children if i can mention you have got archer stephanie two law adage lucidi and many
of them so reach out to them find out about their journey what is it how does it feel to live a
a life with autism they will tell us better because in our case we did quite a lot of things
and eventually we realized when we engaged the one day and he told us you shouldn't have done
all of those things we did chelation we did stem cell therapy we did hyperbarics oxygen therapy
we did aba and at the end when we eventually found a way of communicating with him he told
us all those things were not necessary actually so i would really encourage parents to to talk
to these kids but also as parents let's do our part which is to love the kids to nature the kids
to understand them to also talk to their siblings and talk to family members so that they understand
the the kind of environment uh and the kids that we are raising thank you thank you so much irene
i really do appreciate that in fact i know that zawandi did put a video message together for us
but before i play it i just want to hear from you how exactly did he put this message together
okay so at the moment the one day communicates are using a 26 letter bot stencil the ordinary
sensor that we know and what he would do is he's being assisted assisted by
a communication and regulation partner and this can be apparent it can be a therapist or anybody
but i must say they must be trained on this a spelling to communicate we call it as
to see so in a sense he hears everything that you say around him hes i said you must presume
competence but the problem is that he cannot talk so you ask him a question you put the stencil
in front of him he will point at the letters and in pointing at the letters obviously he he
compiles words and then he compiles sentences he is thought which will have a voice output um
a gadget so in a way eventually he won't use the sense and when he types automatically the gadget
will tell us what he's saying so that is his only means of communication and that's how we
communicate with him i really like that irene to stay on the line we're quickly going to play the
ads and then after that we're going to hear the message from sequential all right okay thank you
all right it's exactly 22 minutes after 11 i'm still on the line with irene
seguan de hat put a clip together for us so let's quickly take a listen
really we are so smart we are just trapped inside our own
we have a mind bodies is disconnected from our bodies what is the purpose of this aquande
foundation to teach non-speakers to communicate for themselves and never to speak for them
what are the values of the sequoia foundation equal rights integrity now also important are
respect and autonomy dignity how would you like to be assisted in achieving your goals
i want knowledge of our abilities to spread i want those who have means to help them without
and so i want all non-speakers to have access to meaningful communication is there anything
else you would like to add we are powerhouses only waiting to ignite just believe in us
oh just believe in us irene what an amazing message that came through from your son
thank you so so much for that and uh should anybody still want to get information on the
zawandi foundation where exactly can they go and they are a couple of media platforms
that they can contact the first one is a whatsapp or a call they can phone o79840
zero three three five they can call or leave text messages and the one they will respond to them
there is a website
www.thewonderfoundation.co.js they can learn more about the quantity foundation
and they can also email as the gandhi's assistant her name is michaela maxson at m-i-c-a-e-l-a
at the gwandyfoundation.com so those are the platform he's also on facebook he's on twitter
if he goes to wandermatendra and you will see him he will also be having a webinar on the 3rd of
december celebrate celebrating disability with um felony speakers and his partners in africa
thank you so much irina i do appreciate your time and thank you so much uh for being with
us today enjoy the rest of your day all right thank you so much ma'am thank you thank you bye
that was of course irene the mother to zikwan de matendra
all in celebration of the third of december which is this friday it's international day of persons
with disabilities and we're also celebrating the national disability rights awareness day