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My Brother is Special: Autism Insights
Episode 2123rd January 2024 • Beyond the Smile • Marylayo
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In this episode, Marylayo is with guest, Richard (Junior) Asomaning, who shares his experience of having a brother diagnosed with autism.  

Discussion points include:

  • What are some of the signs/traits of Autism?
  • How did your brother come to be diagnosed with autism?
  • Did you ever feel overlooked in your family due to the focus on your brother’s needs?
  • Were there specific challenges you faced growing up that you attribute to having a sibling with autism? How did you deal with them?
  • As you’ve both grown older, in what ways has your relationship with your brother evolved over the years?
  • What are the misconceptions or stereotypes about autism that you’ve encountered?
  • Are there any specific strengths or unique qualities that you admire or appreciate in your brother? 
  • Are there any general concerns that you have related to your brother having autism
  • How do you deal with those concerns?
  • How has this experience shaped you as a person?
  • Has there been anything along your journey that you found really helpful?
  • Bible verse to support spiritual wellbeing.

Take a moment to delve into what may be 'beyond the smile' - listen in to the conversation.

Marylayo's spiritual wellbeing tip: Meditate on the bible scripture Deuteronomy 31:8.

Connect with MaryLayo:

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For help in dealing with mental health related matters, please seek specialist advice and support if needed.

Transcripts

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Marylayo: Welcome to Marylayo Talks, a podcast

that discusses mental health and spiritual

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well being.

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Before we jump in, there may be episodes that

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are particularly sensitive for some listeners.

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And if that applies, then I hope you'll be

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able to join me whenever you feel ready and

able.

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In today's episode, I'm with guest Richard

asomaning and we're talking about autism.

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Richard shares with me his experience of

having his brother Daniel diagnosed with

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autism and how he grew to accept the

challenges as well as the joys that comes with

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it.

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Let's listen in.

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Okay, Junior.

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So I know that a lot of people would have

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heard of autism.

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They've got a general understanding in terms

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of what autism is, but I know it's a spectrum.

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So can you tell me what are some of the signs,

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the traits when it comes to autism?

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Richard: I think it will vary from each

person's experience because what I've learned

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with autism is you've got the really mild form

and you've got the severe.

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From my experience, especially with Daniel,

signs and traits that we kind of picked up

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quite early on was a delay in milestones as an

infant, e. G. Him taking his time to stand up,

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to crawl, to walk, to speak and so forth.

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But also, even as he got a bit older, just in

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terms of how he would engage with his eye

contact and just a lack of focus or a lack of

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concentration when doing something.

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So given that Daniel's one was quite mild, it

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was still, if I could say, foreign to us as a

family because he was the first among myself

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and my siblings to be diagnosed with it.

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Marylayo: And so how then did the diagnosis

come?

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Because you mentioned about how you started

noticing that delay with certain things that

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you would expect during his development.

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How did that lead then for something to

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actually happen?

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Richard: The older he got, the more worried we

became with his development.

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So, for instance, I think with Daniel, he only

started to walk, probably at free.

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And even his speech, we was quite concerned at

the delay.

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We thought, okay, he's not even saying the

quote unquote basics.

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And it was through.

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There's this place in Kennington, I believe

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it's called Mary Sheridan, where there's

occupational therapists and so forth.

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And it was through that appointment where he

was diagnosed.

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But in the lead up to that, we'd gone to

various appointments.

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We would hear the usual, oh, some people, some

kids take longer than others and so forth.

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But again, I think signs began to rear its

head when he started nursery, because even

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when he started nursery, he still wasn't

making the progress that we'd hoped so.

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Even when it came to his interaction with

other kids, we found that to be.

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It wasn't bad or anything.

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We just found him to.

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He was very isolated.

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It's like he didn't want to engage with the

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other kids at all.

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And it was something that the nursery staff

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picked up quite early on, to be fair to them.

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And naturally, we're still hoping, no, he'll

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come round, he'll get better and better.

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But the older he got, literally as he was

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about to turn four, was when I believe the

diagnosis came about roughly.

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Marylayo: And would you say that was more of a

relief or not?

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Was it like a double edged sword?

In one sense, it's like, okay, you now know

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there's that confirmation rather than

wondering at the back of your mind and hoping

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for something else and therefore you can move

on.

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Richard: Exactly.

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But it's also that refusal to accept that he's

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got it, because, again, he was the first.

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And it was like how.

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And at that time, we didn't know much about

autism, myself included.

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We were all fairly ignorant of it.

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And when he was diagnosed, we then immediately

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had fears of, how's he going to grow up?

Is he ever going to speak?

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What about schooling?

All these questions began to rear its head.

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So it was a relief to know, okay, that there's

an underlying reason why things have been this

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way.

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But it was more like, yeah, it wasn't what we

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wanted to hear.

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Basically.

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Marylayo: Of course, I'm going to turn it a

little bit more about then you as in terms of

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as a family, you got that news, and you're

already talking about being ignorant when it

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came to autism.

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So how then did you feel as an individual, as

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I guess, a young teenager?

How did you grow in terms of that acceptance,

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if you have accepted it?

And how was the family dynamics as a whole

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when it came to that transition?

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Richard: So for me, I must have been probably

15 or maybe 15, going 16 at the time.

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And it was heartbreaking, I'll be very honest.

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At the time, for me personally, it was like,

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wow, it was heartbreaking for me.

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But I also felt heartbreak for my mom.

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In a weird way.

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I also felt heartbreak or sympathy for Daniel

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as well, because it's like he's the last born

and this has happened.

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So I'll be very honest.

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At the initial stage, there was this hope that

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we hope it's not going to be really severe, we

hope he's going to be able to speak and so

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forth.

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So I suppose with Daniel, the older he got,

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the more we realized how mild his autism was.

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And that was, we found that to be comfort.

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And that was a form of comfort for us because

again, in my ignorance, whenever I thought of

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autism at the time, it was always the severe,

always making noise, et cetera, et cetera.

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And initially, I thought, wow, this is new for

us.

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But to our relief, as he gotten older and as

he began to speak, as he began to engage, as

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delayed as it was, it did fill us with hope

that, you know what?

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He is going to speak.

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He is going to end up speaking.

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He is going to be able to engage, interact,

learn, and so forth.

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And with Daniel, he's just gone from strength

to strength, because if you speak to him now,

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although you can pick it up as you're speaking

to him generally, he's a very sociable person.

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He's easy to understand.

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He's got great energy.

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He's very enthusiastic, and he himself has

embraced it as well as part of who he is.

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But he doesn't let it faze him or he doesn't

look at it in distaste, or he's never anxious

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or anything about it.

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Marylayo: That's good to hear.

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So were there any specific challenges that you

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faced growing up that you can attribute to

having, like, a sibling with autism?

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It could be linked to the misconceptions that

people have, the stereotypes.

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What are the typical kind of things that

you've encountered that, you know is down to

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your brother with autism?

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Richard: One of the early things was telling

my friends, but also introducing Daniel to my

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friends.

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So, for example, maybe if I'm picking him up

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from nursery or me and him are walking to

McDonald's or something, and I see my friend

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or my friends or whatever, at the time, at the

early phase, it was, how are they going to

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react to him?

How are they going to take to him?

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How are people in public going to take to him?

Are they going to look at him funny?

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I had all these feelings and all these fears

and concerns, but thankfully, it was the

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complete opposite.

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And my friends were very understanding.

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They acknowledged him.

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They embraced him for who he is.

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So that was a big relief.

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But I would say generally when I'm walking

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with Daniel or when I was walking with him,

maybe to school or from nursery or whatever,

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it was just things like, okay, this is just

normal to me.

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I'm walking, but how are people going to

interact?

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Are people going to stare at him?

Are people going to.

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I just felt very uneasy being with him in

public.

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And even, I'll tell you what, even bringing

him to church as well, how people will engage

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with him how people will see him no matter

where we went, whatever public setting it was.

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I've always had that underlying concern or

worry that I hope people don't treat him

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different or treat him in a weird way and so

forth.

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Marylayo: Would you say, like you mentioned

about when you would meet your friends, let's

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just say walking down the street, did they

know that Daniel had autism beforehand?

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Okay.

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And so I guess how they reacted, given that

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they knew, was a pleasant surprise for.

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Yeah.

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Yeah.

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Richard: Because more importantly, they didn't

treat him different.

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Marylayo: Right. Okay. And then over time, I'm

hearing from you that it changed in terms of

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you being concerned about what others were

thinking.

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Is it just because I don't know what changed

for you?

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Richard: I think at the back of all the root

of my initial concerns, it all honestly stems

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back to my ignorance growing up when it came

to attitudes towards autism.

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Because I can recall in my ignorance, when I

was in primary school and we had a section for

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children with autism, and even as a child I

thought, okay, this is a bit weird, this is

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strange.

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They need help, all these ignorant claims.

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So to have experienced it myself was

definitely humbling, for one.

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But in terms of overcoming it through time, it

was Daniel's strength of character to be

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himself and to freely be himself.

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But for me, also gradually allowing him to be

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himself.

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Because in the early phase, if he's doing

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something which someone might consider

abnormal, I would be like, daniel, stop doing

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that.

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Do you know what I mean?

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And I had to sort of overcome that and allow

him to be himself, allow him to be free.

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And that helped.

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Marylayo: I mean, that makes sense because I

can imagine in the earlier phases or time it

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was you probably trying to restrain him.

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And then after a while you realize that, you

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know, what?

Let him be.

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And is that you giving yourself a self talk at

a certain point in time?

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Richard: Definitely.

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But it wasn't even just know.

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For instance, I wasn't the only one who would

tell him, Daniel, stop doing know.

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My mum would do the same.

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I would say, looking back, it was probably.

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It could have been my sister Frida who was,

you know, just let him do what he's doing.

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It's fine, it's fine.

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You don't need to try to police him or

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anything like, you know, the more she'd done

that, the more I began to understand and also

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adopt the same approach.

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Marylayo: And I would imagine that would have

been liberating for both you and Daniel.

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Richard: Yeah, definitely.

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Marylayo: So I'm just wondering about how

there might be scenarios or situations where

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people have got children.

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One of which has autism and the other child

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doesn't.

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And then because the parent's focus is on the

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child with autism, because of their needs, the

other child may feel perhaps overlooked or be

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trying to seek attention.

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And I'm just wondering if that's something

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that resonates with you at the time.

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Richard: No, I think for me, I might have felt

that way if I was younger, if he'd been born a

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couple of years before.

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I think when Daniel was born, I was 13.

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I, at that point was like, I'm no longer going

to be a mommy's boy.

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I'm a teenager now.

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I'm going to try and do my thing.

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So when Daniel came for me, I adopted the

mindset of, okay, how can I help my mum?

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How can I be more hands on and supporting her

to look after him?

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So my mom was saying I was quite good in that

regard, to be fair, I wasn't necessarily in

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need of.

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I didn't feel jealous or like my space had

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been taken.

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No, sure.

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Marylayo: So how old is Daniel now, if I can

ask?

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Richard: Daniel's 18. He just turned 18.

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Marylayo: So he's an older teenager?

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Richard: Yeah. He's a big man.

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Marylayo: So how would you say that your

relationship with him has evolved over the

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years?

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Richard: Do you know what?

I don't know if it's just that little brother

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thing or that big brother thing where you're

always protective, but I think with Daniel, I

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am always going to be overprotective around

him.

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It's just in my nature because of how much I

love him and because I know of his autism,

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there's that sense of trying to ensure that

nobody harms him or no one takes advantage of

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him.

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And I would say as a child, when he was a

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child, at times I would honestly cry.

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I would honestly cry because he was a sweet

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child.

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And honestly, I just wrestled with God, like,

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why?

He's such a sweet boy.

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The rest of us didn't get autism.

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Why him?

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So there was a lot of.

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It doesn't feel fair.

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This isn't right.

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He doesn't deserve this.

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And as a result, I grew in compassion towards

him more and more.

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And in turn, I became more protective over him

when he was younger, to be very honest.

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But as he's gotten older, he's entered that

teenage stage.

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He's been in this teenage stage for a while

now where gladly, he doesn't really want me

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interfering with what he's doing and so forth,

which is fine, I think, where we're at right

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now or how our relationship has evolved is

he's come to respect me more.

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But that hasn't been easy either, because

we've still clashed.

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We've still clashed as brothers.

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I'll tell him to do things.

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He doesn't want to do it.

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We go back and forth.

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The usual sibling.

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Marylayo: Sibling kind of dynamics.

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Richard: Exactly. And I've been deliberate in

that because inasmuch as he has autism, I no

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longer interact with him as though he has it

for me.

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I just see him as my brother.

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I'm aware of it, but I don't let it get in the

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way of how I interact with him or how I treat

him.

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Marylayo: It's a learning for me.

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It's interesting.

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And would you say, though, would you say that

that's because he has mild autism?

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Richard: Yeah, I would say so, absolutely.

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I think if his was more severe.

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If his was severe.

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Yeah.

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Then things probably would have naturally been

different, I reckon.

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Yeah.

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Marylayo: Like earlier, you mentioned about

Daniel's personality.

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You kind of highlighted it a little bit.

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So what would you say are the specific

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strengths or unique qualities in Daniel that

you admire or really appreciate how.

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Richard: Bold and expressive that he is?

He's very bold, he's very bubbly, very

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outgoing.

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He's the opposite to me in that it's not that

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I'm withdrawn, I'm just very mellow.

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But he's just full of life.

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Very charismatic, an entertainer, essentially,

very sociable, likes to interact with people.

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That's something that I personally admire in

him, that there's times I'm thinking, this guy

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seems a bit more popular than me and it's all

good.

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I love him the same way.

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Marylayo: You know what?

But that's even a contrast to how you

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described him when he was a child.

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You said when he was in nursery, he wasn't

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very sociable with the other children.

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So I guess as he grew older, his personality

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and his ways changed.

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Yeah, right.

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Richard: Great deal.

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Marylayo: Before, you mentioned about how you

even cry at times and you'd be like, why,

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lord?

Because he's such a sweet boy.

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Was that in the early days or was that for a

long while?

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When did that stop and how did you come to

that place of stopping and questioning the

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why?

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Richard: Yeah, it's lasted most of his life.

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I would say it probably stopped probably when

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he got to secondary school because.

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Marylayo: 1112.

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Richard: Yeah. So I would say when he

officially started secondary school.

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And the reason for that was because I found it

a relief.

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And I was pleased to know that there were

schools or secondary schools which catered

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specifically to children with autism, because,

again, in my ignorance, I didn't know, I just

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thought all schools just had a section.

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I never knew at the time that they were

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designated schools for children with autism.

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So to see him start, to see him learn, to see

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him enjoy himself at the school was a big

weight off my shoulders because it was like,

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okay, this was something that I was quite

fearful about because having been in secondary

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school, you know, the jokes, you know what's

said, you know what goes on.

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And I was very worried about him potentially

going into that.

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So once I saw that he'd settled into secondary

school, it was like, okay, this is what it is.

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How can we support him?

How can we help him make the most of his

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education?

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Marylayo: And you've mentioned how he's now

18.

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I don't know if he's still in the education

system.

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So then what are your fears as big brother in

terms of that next phase into adulthood?

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And then how are you dealing with it?

Or how have you dealt with it?

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Richard: Do you know what, as of recent, he

has begun going to school by himself only just

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as he's turned 18.

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And prior to that, that was a major fear for

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me because I thought what could happen to him?

Are people going to look at him?

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Is anybody going to try and approach him and

harm him?

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All these natural concerns and all these fears

I had.

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So it's been a relief to see how he's

seamlessly taking it on and he's going to

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school by himself.

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That's going well.

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He now needs to come home by himself.

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That's the next thing.

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And to be fair, I'm not as worried as I was

prior to him going to school by himself.

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But going forward, he's going to be starting

college and the college that we're hoping he

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goes to, there is a section for students with

autism.

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Again, I think on this occasion, I'm not as

fearful as I was prior to him walking to

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school, but there is that sense of, okay, he's

going to be among more students who don't have

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autism.

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How are they going to react to him?

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How is he going to react to them?

Because Daniel's a gentle giant and he's not

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street smart either.

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So where he isn't as street smart like myself

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or my siblings, there is low key, that fear of

what's he going to do if someone actually

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tries it with him.

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I hope not.

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But naturally, these are the things which go

through my mind going forward.

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Marylayo: So how do you tend to or how have

you up to now prepared?

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Daniel, when it comes to those key milestones,

those key phases like you talked about going

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to school by himself leading up to it.

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How did you prepare him for this kind of time?

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Richard: You know what?

Credit to my mom.

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My mom is actually, she's been remarkable in

how she has because she's done the most

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preparation with him, I would say, because

she's always taken him to school.

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So the way she done it was she did it

gradually, I should say, whereby they'd go to

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the bus up together, but then she'd allow him

to get on the bus and then he'd go and then

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he'd call to say, he's arrived.

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So I think we're probably going to take a

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similar approach of him coming back.

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Now, do you know what his school had been

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second to none in that regard, because

inasmuch as we would speak to him and give him

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insight on things to expect, school already do

that every day with him.

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So whenever we are talking about a milestone

that's coming up, he would shed light and say,

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yeah, him and school have already been working

on it, so he's already aware he's ready, he's

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getting ready.

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So we wouldn't have been able to do so without

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the help of school because school have also

given us tips on how we prepare him as well.

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Marylayo: With you, quite well, then.

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Richard: Very much.

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Very much.

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Particularly over his educational health care

plan that's very thorough, very comprehensive,

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that looks at milestones in detail.

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I'll give you an example.

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Even things like promoting independence for

him as well, school have had a hand in that,

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but we've also been very proactive in making

and ensuring that he is to become independent.

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Because Daniel is a bit of a mummy's boy, he's

still a bit of a mommy's boy.

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And even me and my mom have had to wrestle

with each other to.

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I'm like, mom, you got to let him be a young

man.

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And for her, that's still her baby.

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And inasmuch as she wants to let him be a

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young man, she still sees him as her little

baby who was diagnosed with autism, even till

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today.

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She's coming around slowly, but it's ongoing

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and I think it always will be.

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Marylayo: Definitely.

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Especially as a mother, I would imagine.

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I don't know if there's anything that you

could add or share in terms of being able to

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kind of let go, not let go of responsibility

towards your brother, but let go of those

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fears, those maybe concerns, especially that

you had before.

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I think maybe it was a bit more evident and

felt by you, but there would still be

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concerns, I guess, in various ways, because

you're his big brother.

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What has helped you and what has supported

you, what's been of help to you, whatever it

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may look like over.

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Richard: The years, I think what's probably

helped me that I maybe haven't given as much

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credit or focus on is how faithful God has

been.

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Concerning Daniel.

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I say that because going back to the

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beginning, we genuinely thought the worst.

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But at the same time, particularly from my

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mum, there was this sense of, he's going to

talk, he's going to be all right, it's not

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going to be as bad, it's not going to be as

burdensome.

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So being able to see that year on year, seeing

him evolve into a man, seeing him wanting to

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take ownership over certain things, he's still

getting there.

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But things like that fill me with hope going

forward.

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Whereas naturally, when he's a baby, you don't

know what he's going to turn out to be, you

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don't know how he's going to grow.

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So naturally you have these concerns.

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But when you see him grow, when you've seen

him grow up and become the person that he is,

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it does fill me with hope to an extent.

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But more importantly, whilst he's growing,

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simultaneously, he has myself and my siblings

who are as hands on to support him and to try

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and steer him in that right direction.

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Marylayo: You have touched on this earlier,

but how would you say that you have been

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shaped as a person by having Daniel is your

brother, but Daniel who has autism, how has

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that shaped you?

And what have you noticed about yourself over

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the years?

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Richard: It's humbled me.

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It's definitely made me more humble, it's made

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me more compassionate, particularly towards

mothers, single mothers, especially whether

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their kids have autism or not.

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I'm not a parent, but seeing what my mom does,

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it's a lot, but yet there are still mothers

who have children that don't have autism and

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it's still a lot.

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So it's definitely made me more understanding.

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And mind you, this is coming from someone who,

in my ignorance, I had some really unhelpful

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views and attitudes or outlook towards people

with autism.

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So it's mellowed me.

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But I will say it's also made me grateful and

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appreciative of my journey in that naturally,

there's definitely been occasions where I've

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been like, wow, lord, I'm grateful for Daniel,

but I'm also grateful that I haven't

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experienced what he has.

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Not to talk down on what he's gone through,

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and I embrace and love him nonetheless, but

it's just made me grateful for the

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developments and milestones that I've made.

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Yeah, I hope that came out as nice as.

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Marylayo: I hope I get it.

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One of the things I wanted to ask is there are

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people who.

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They have good intentions, but they just don't

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know how to act on them.

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For example, there's a lot of political

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correctness that goes on, that's around, and

some people won't know, okay, what do I do?

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What do I say?

How do I approach?

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I don't know of someone close to me with

autism, so they might stay away from that

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person just because they don't know how to be

around them.

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So what have you found that could help, or

what would you say to someone like that in

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terms of how they could be with someone with

autism?

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Richard: I would tell them, be the same with

someone with autism as you would with someone

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who doesn't have autism.

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Because I was, once upon a time that same

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person where I'm questioning, how do I speak

to them?

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Will they understand?

Will they engage?

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But you have to make them feel like a human

being.

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You don't need to make them a special case.

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You don't need to make them feel like a

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special case, because, believe you me, some of

them will spot it.

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::

They'll clock on, and it's not helpful.

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And I suppose you have to ask yourself, how

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::

would you feel if someone came at you in that

light?

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Do you get what thinking about?

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Marylayo: I mean, and that makes sense.

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And it kind of, like, chimes with what you

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said about how your friends, when you saw them

and you were with Daniel and how, because they

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didn't treat him differently, that was a

relief to you, and it was a pleasant surprise,

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and that was helpful.

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So, yeah, that does make sense, actually.

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Okay, so if there is someone who's listening

and they're struggling because they've got a

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::

member in their family with autism, what would

you say to them?

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And there's probably a whole load of things

you could say, but based on some of the

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concerns that you had that you no longer have,

perhaps, what would you say to them that may

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help?

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Richard: I would encourage them to engage with

the support available.

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So whether that's through school, social

workers, whoever, whatever professionals are

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involved to aid your child's development, I

would encourage all parents to engage, because

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from experience, my mom and we naturally also

had the apprehension of all a social worker is

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involved.

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Are they coming to take him away?

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Are they coming to.

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::

You've got that feeling of fear because you

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don't know what's going to happen.

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::

But we found them and professionals involved

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to be invaluable, as in without them.

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Honestly, we would not have made it this far

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::

with Daniel and his development.

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So I'd say to everyone listening, engage.

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::

They don't mean any harm at all.

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Engage in the support, learn about it and

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through time.

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::

What we found is the support helped us over

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::

time to navigate and make the most of our

predicament.

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But more importantly, the support helped us to

make things better for Daniel and easier for

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Daniel, which in turn has aided his

development so far.

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Marylayo: And I guess that applies even if

that person has severe autism.

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It's about engaging the support that's

available that's around here.

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::

Junior with that, I just have to thank you for

sharing and just talking about your

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experience, and I'm sure it's going to help

someone out there.

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Thank you so much.

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::

Here's a spiritual wellness tip for you.

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::

It's deuteronomy, chapter 31, verse eight, and

it reads, and the Lord, he is the one who goes

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::

before you.

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::

He will be with you.

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::

He will not leave you, nor forsake you.

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::

Do not fear or be dismayed.

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::

Thank you for listening.

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Do follow and join me again next time on Mary

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::

Layo talks beyond the smile.

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