Parent Advocate - Solape Azazi

We meet parent advocates and the founder of Cradle Lounge Special Needs Initiative.

Episode Transcript

(00:00):
It was like nobody was understanding mebecause some people thought it was postpat Tom.
Would I even talk to would Icoming? I couldn't even communy kill
my husband. It was like analien because it was telling me it's good
to be what is going to beokay? And then it was a lot
for me to take in. Hello, and welcome to Special Mom's Africa,

(00:28):
the podcast Real Talk on special needsparenting. Of course, my name is
Tony Fa Lugiky and I'm your leadhost. On today's episode, I am
in the studio with some very troublesomeladies Zoo Yes or bad for you,
Kemmy Luther Luther and Essential Queen Mamaand yeah, miss see fer Jim Lutao.

(00:55):
Hello, hell actress extraordinary. Sotoday we're looking at community and how
it's crucial when you have a specialneeds child. We meet an amazing parents
advocate who is using her experience asa special needs mum to directly impact and

(01:17):
help other families. Yeah, solet's get stuck into it. Momsbelief dot
Com says feelings of isolation among parentsof special needs children are common. They
often feel alienated from their families andtheir communities because they barely have time for
social obligations like dinners and family gettogethers. Most of their time is spent

(01:41):
in therapy and taking care of theirchild. Who can better understand this experience
except for other parents of children withspecial needs. Support groups remind you that
you are not alone and that thereare other families like yours out there.
In my own experience, support groupsand communities are a treasure trove of information,

(02:05):
for example, finding out about goodschools, doctors, therapists and more.
They are a safe arena to ventI sure do do a lot of
venting, share ideas, and areoften a great tool to push and create
advocacy. I personally have made lifelongfriends through the special needs community. One

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of these friends is our guest todayand we meet her right after this break.
Stay tuned. I'm Toye falugi Ekis. If you're enjoying this episode of
Special Moms Africa brought to you bySimone's Oasis and Africa Business Radio, then

(02:52):
why not listen to our other podcast, represented storybooks and more for African kids
Now, don't forget to subscribe,put on your notifications and share with loads
of people out there. Thanks forlistening. Welcome back. So let's meet

(03:16):
our guest, missus shaw lackey AZazi say quick hide because I tell them
about you. Let him hear yourvoice. She's final, she's fine,
she's three day with the outfits.Oh my goodness. I'm just like,

(03:37):
like, we'll get she was theother day like six inches. I'm surprised
she's wearing crocs today and they're likein her I have a pair of anyway.
Anyway, anyway, so she lackweyA Zazi is the executive director and
founder of Cradle Lounge Special Needs andInitiative, a non governmental organization set up

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to advocate and empower caregivers of individualswith autism and other related special needs with
tools required to provide an improved qualityof life to these individuals. Cradle Lounge
Special Needs Initiatives also provides a smartPlay approach to improving social play and interaction
of individuals living with autism and theirsiblings through structured play, arts and group

(04:27):
language therapy. She is extensively experiencedin hr generalist affairs, with expertise in
employee relations as well as overall managementskills including staff management and project leadership.
She's a wife and a mother oftwo boys, one of who was diagnosed
with ASD autism spectrum disorder at theage of three. Welcome, she'll apply.

(04:50):
Thank you so much. Try Andthat's such a mouthful. Hey,
where you're doing, you're doing themost, You're doing the most. I
had to really focus on saying everycorrectly. Thanks. So tell us about
your special needs journey, how itstarted, how you got your diagnosis,
and what your son's diagnosis exactly meansfor you. Oh wow, that's a

(05:13):
lot. So let's start with atthe beginning and the beginning. Um,
okay, um, when did Iget the diagnosis? My son aged ten
walked at the right time? Maybeaged ten months? Sorry not ten years.
I mean, it's okay, alreadysomewhere, we're here for you.

(05:46):
I mean I actually said that wasnot what I was coming here. You
are mistaken. Yeah, that's okay. Let's start from the beginning. Now
I'm not using why I don't knowwhat's wrong with you? So well,

(06:11):
at fifteen months, my son wasstill you know, doing developing rights and
all of that. And then betweenfifteen months eighteen months the words decreased.
But we didn't take too much noteof that because I mean nobody really does
take note of those things when it'syour first child and you've heard your child

(06:31):
say my my dad all those regularstuff, so you don't really pay attention.
And then I think eighteen months totwenty months, we noticed that he
went meute completely. Yeah, firstit was the words first reduced, and
then we didn't hear anything at all, and I remembered that it was it

(06:55):
wasn't even neither noticed that I wasn'tsaying anything. I think it was my
sister in Lada said, I've notis that this boy hasn't said anything since.
And then I then now sat downto start paying attention to it,
and I realized that indeed, hehasn't said anything, and I became worried,

(07:15):
and of course we then now soit is pedetrician, And you know,
I think no before we did seeI mean, we did see him
at some point, but I can'tremember whether it was before twenty months or
I can't remember when, but Ido know that, well, goodness,

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Brice is I can't even met.And when he started talking again, it
was baby babble and I was shockedbecause this is a child that I have
his mouthstone videos of him going upand down the stairs of him calling dada,

(07:57):
mama and I get down. Iwant to get down, you know,
like if he wants to get downfrom the stairs. I have videos,
like lots of videos. And thenhe became and I think I was
not I think I was actually pregnantthen and I was almost close to delivery.
And at that point my focus wasjust you know what, let's that

(08:20):
this baby and whatever it's coming,we'll deal with it, you know.
I mean, I don't know whatthis is. But before that time,
I've heard autism, and you know, the back of my mind, I'm
like, this is happens to somepeople share I don't know what that is.
And so we saw a doctor andthen it's doctor then now said,
oh, I think I might haveto tell you, but we're gonna have

(08:43):
to flag him down for autism.It's like, okay, breathe. You
know, that's not the end ofthe world. What does it mean?
And then I started reading and ofcourse, you know, Google is just
the worst place to be sure,and so you start to read, and
then you start to read the negativesand then the negatives were just slamming me
down, and you know, andthen this is a family that term is

(09:09):
a big family, a very bigfamily that you know, kind of family
that when you get married, thefirst year you're already pregnant, the first
year, you already have a child. You know, those kind of things
like children all over and I'm like, I've never heard why is it me
coming into this family? And thenthe first child is artistic? You know.
So it was just and then Ijust had a baby. I was

(09:31):
spiraling down and having so much inmy mind, and it was like nobody
was understanding me because some people thoughtit was postpatom and like it's not even
postpatom. I can't even would Ieven talk to would I coming? I
couldn't even communicate with my husband.It was like it was like an alien

(09:52):
because it was telling me it's goodto be what's going to be? Okay?
I don't do you understand what they'resaying? That it is wrong?
You know? And then it wasjust it was a lot for me to
take in. And before I knewit, you know, spiral through depression,
the why mean that you know ithas to be me, you know,

(10:13):
all of that negativity. I mean, this is someone I mean you
should have seen me here, youshould have seen me before, and then
they during that period, I wasa mess. I mean, this is
someone that was like, oh allthat, And then suddenly someone tells you,
girl, this is the result ofyou know, autism means this means

(10:37):
dad negative, This negative, Dadnegative. You know, I'm like not
even knowing where to turn. Confusion. And then because the family didn't know
how to support and because you werevery much internalizing everything, yes, you
know, so it would it wouldhave been hard for them to help you.

(11:00):
Also because you know, you're wonderingwhy this is happening. You're dealing
with a newborn baby as well,so your head, your mind is raising
like a trillion miles per hour.You don't even have time to talk about
it, to be even if youwant to, Like, you don't have
time to even talk about it.So somewhow would even be scared to approach
you because they don't know ye right? Yeah? And then you know this

(11:26):
is me with OCD because I wasmisperfectionist, you know it. My friends
used to call me breathe from desperatehouse. Why you know that breathe from
desperate out white that likes you know, everything has to be lined properly,
you know, everything has to feedperfectly. And then suddenly I'm faced with

(11:52):
just some sudden suddenness and I cannotplace it. I cannot problem solve it,
I can't walk through it. Itwas just I was lost because I
just didn't know where to turn.And I remember watching my children grow around

(12:13):
me, and everything was just Iwas in my own bubble, my own
world basically, and I think whatsnapped me out of it was one day
I realized that my second son wasalready six months and I couldn't really remember

(12:39):
living through the six months. Yeah, it makes sense. I couldn't remember
because I was in a shell ofmyself. I was. It was like
I was leaving but not I wasnot present, I was not there.
And then the next thing I lookis a ready six months and then just

(13:01):
gone like that. It's just gonelike that. And then at that point
I said to myself, it's timeto start finding a solution to this,
because this is not life, thisis not living, this is not you
know, I'm not sleeping sometimes I'maveraging like maybe one two hours a night.
Wow, I wasn't sleeping, Iwas. I just felt like I

(13:22):
wasn't giving the very best to thechildren. And the family. And then
at that point, my husband ismy best friend, and imagine both of
us not even on the same frequency, because it was like, if it
says good I'm like having to checkoutside. Do you say good morning?
I'm like trying to say really morningor night or you know, like we're

(13:43):
like saying opposite things to each other, that kind of thing like, and
that was not what I set outfor my life. I started to step
back and started it all over again, and I was like, Okay,
so this is the diagnosis. Sowe're not going to look at negatives anymore,

(14:03):
We're going to look at positives.Where is the positive in all of
this Google research? And then yes, because I mean I went there first,
so I felt like I needed togo back there to go and find
what would help. And I didsee that there were a lot of success
stories, and I did start toread about how it became success stories,

(14:28):
because yes, because of the effortyou put in. You cannot have a
success story if you do not putthat effort in. And so I decided
to be well for myself first,get myself out of depression. I mean,
it wasn't like a very easy task. I had to resenter myself.
I'm a Christian. I had todiscover my God in my own way.

(14:54):
Yeah, and then started my journeyfrom there healing myself and then heal my
children. So on that point,how did you go back? I love
the fact that you said healing myselfthen healing my children, because we're useless
if we don't take care of ourselves. So what did you do and how
did you do it? How didyou even find that strength to heal yourself

(15:20):
and then go on to heal yourchildren? Support? Who gave you support?
I had to identify what I neededto get well, because you first
have to libel what is wrong.I struggle with when people say, oh,
I don't like to put a libelto it. I don't like to

(15:41):
put a liberal to it. Butyou see, if you have if you
have maybe some sort of disease,but you don't cannot diagnose that, how
can you find a solution what todo? So first you need to first
and defy what it is. AndI realize what I'm dealing with is depression.

(16:07):
What is causing my depression? Mylack of faith in myself, my
feeling I'm not enough, my feelingempty, my feeling incompetent. My feeling,
it's my fault, you know,And so I had to there now

(16:29):
rediscover, like I said, I'ma Christian. I had to rediscover what
the truth is about myself, thatI am enough and I have that strength
is within me if only I wouldbelieve. And when I did that,
I became stronger. And then Irealized that I have to be in the

(16:51):
right setting to be able to maintainthis wellness, and so how do I
get it? Being a Christian doesn'tmean that you have to be in charge
all the times. That's not whatI need. So I had to look
for people that have the same ideasas myself and are doing the same thing.
You have. You have children onthe spectrum, you have special in

(17:12):
these children, But how are youthriving with your faith? Because in all
of these my faith was what liftedme from depression. So I don't want
to leave it behind and then lookfor something else. So I held on
to that and looked for people withthat faith and have children on you know,

(17:32):
with some form of disability and arethriving. And those were the people
I leaned on for support, andI continue to lean on whenever I need
help. So how did you finda way to support both your children?
Because we can't forget about the siblingwho is neurotypical as well, because they
would have been directly affected as well. So how did you support both of

(17:56):
them? First, you have tounderstand that they are both different. So
for me, I try to lookat each of them as their individual people.
So I would not say because I'musing one, I'm giving one person.
So now let's take it all theway back. I do a lot

(18:18):
of differentiation in my house. That'sI do differentiation, and I do like,
Okay, even if I'm going togive the first thing, I know
he's not going to finish this foodand I know it doesn't like this food.
Does not mean that I would forceit on another person. That I
won't do that because that's not doyou understand what I'm trying to say,
That's what? So I wouldn't.I try to find out what each person

(18:41):
is about, and I meet eachperson at their point of need at as
unique yes, unique individuals. That'samazing. So well, I didn't look
at the time where first pace moving. Can you tell us about Credle Lounge.
Credle Lounge, that's my your baby, my baby. Yes. So

(19:06):
I started off Cradle Lounge in twentynineteen. It started off like an like
just this act and craft place,And I started it off because of my
son, who likes act and craft, likes it, is very into paintings
and doing all the stuff. AndI felt like I could bring an art

(19:26):
instructor in and then have other childrencome in and paint together with him.
And so it was just like whenyou say other children both special needs.
And I realized that MeeTime comes andI have something started out for his younger
brother, but I don't have somethingstarted out for him. So I decided

(19:48):
one meetim. I sent him noticeto school to some of his classmate's mom
that, oh, this meetim.I'm going to have two days in my
house. I'm going to have aninstructor in. You know, your children
and will paint, will play wellthis, and dad and dad, and
then just so that I can createfriends for my son there in his class.

(20:08):
They need to know him, theyneed to know how to play with
him, to understand him. BecauseI felt like, okay, he goes
to school with you, but doyou understand him. Let me see how
your interaction with him is I mean, is he isolated in class? So
I had a few moms in thatI could talk to, so they said,

(20:30):
oh, no problem. And thenthey brought their children and they had
fun in my backyard painting for twodays. And I'm like, wow,
nice, and that's what I gaveyou the idea, and I felt like
okay. And then they were like, oh, we didn't know Prayer likes
to do this, like, yeah, he loves it. Oh we didn't
know he likes I said yeah.I said, so now you know what
you can do with him. Andthen they're like, oh, so when

(20:52):
he's crying a lot, we canjust give him this. I said absolutely,
and they went back to school andthen I think I saw them during
pickup and they were like, oh, Prey's mom. Preer was crying,
and then I offered him a crayonand it really dises. I'm like nice.
And then in my mind I'm like, Okay, I just taught them
a way that they can include himand then they can watch out for him.

(21:15):
And and I'm like, can Itry with more kids? I don't
know. If you can hear bath, you can me she's breathing, which
means that she's affected. It's notjust a breathing tears. Yeah, I'm
sorry, I'm just I'm so youactually brought community to life. You found
a way to help your child andhelping others at the same time. So

(21:40):
yes, I'm choked, but I'mso impressed. Thank you. So before
we wrap up, what are yourplans for Credle Lounge? Have you taken
this thing that just started in yourbackyard? What's the future for it?
Okay, the future for it isto have a space for children to come
together, but typical and children withspecial needs to come together and learn together

(22:03):
in a place set and to findout how they can interact together without prejudice,
without biases, just play and interactand emulate and imitate you know each
other, and just care and justknow that I'm different, You're different.
But at the end of the day, we can all have fun and learning

(22:23):
that fun. I really praying forthat and we'll definitely sign up. So
we've come to that point in theshow. Guys, you know what it
is the honest truth where we askour guests to share in one minute something
about their special needs journey that theyhave never shared with anybody else. They've

(22:47):
never said out loud, They've thoughtit but never said it. You have
one minute goes You're luckily okay.For a very very long time, I
used to up in the middle ofthe night and then I would say,
should I just any like this?And then if the days that I don't

(23:11):
am happy? And then the daysI do, I I turned my journal.
Today is day I had to sideout our chicken today? When would
this stop? Ha ha? Thankyou so much for sharing that, and
you, if anybody's listened to thepodcast, you know that all of us

(23:34):
here have had exactly those same thoughts, so should happen. You're not alone.
I think honestly it's probably every singlespecial needs parents thoughts at one time,
but very few people are willing toshare such a deep, deep pain

(23:55):
with others and to be so vulnerableto vocally say it. So we really
are so thankful that you would sharethat, because someone listening it would help
to know that this bubbly person whoshared this gung host story was so low
and has been so low that youwould have those thoughts, but you can

(24:18):
come out of it. So thankyou so much for sharing that. Now,
before we go, we've obviously runout of time, Please tell our
listeners where they can find you onsocial media. Cradle Lounge, Yeah,
that was easy, Google, onInstagram, Facebo Initiative actually, oh sorry,

(24:40):
school teachers though she's very emotional emotionalsand that's okay. So you can
find Cradle Lounge Special Needs Initiative onall social media and on the Internet if
you have Hence Hannet, Well,I've been in the studio with my co
hosts of you Kenmy luth and Seeingfrom the corner of my II and meet

(25:07):
now and you can of course findus, including myself at Special Moms Africa.
Join us next time for our finalepisode of this season. Well that's
it from us from a Special Mom'sAfrica, real talk on special needs parenting
until then sea For sponsorship inquiries,you can DM us at Simon's Oasis on

(25:48):
social media or send an email tohello at Simon's Dash Oasis dot com.