Latest / Keeping it Real with Erin and Terry / Episode 4 - Autism Dad: Terry's journey with Harry

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Episode 4 - Autism Dad: Terry's journey with Harry · Keeping it Real with Erin and Terry

0:06
Welcome to Keeping It Real with Erin and Terry.
0:09
Sponsored by Imperfection by Erin.
0:12
And produced by Magic Door Studio.
0:14
On today's episode, we're gonna talk about Terry's journey when
0:21
we discovered our son Harry had autism.
0:25
I have done lots of interviews and podcasts so lots of people
0:31
have heard my version of how I felt and feel about our son's
0:38
diagnosis, but this is the first time that anyone has heard
0:44
Terry's version. I've never properly basically
0:50
talked about it to anybody, I don't think.
0:55
This is where I interview my husband and even sitting here
1:04
feels really emotional because not only can I feel his pain and
1:10
understand it, I also love him deeply and it hurts me to see
1:18
when he is vulnerable and Horton too.
1:26
So we're going to take a deep breath.
1:33
In case people haven't heard, here we are.
1:38
I'm Erin, this is Terry and we are married and we have a
1:43
beautiful nearly 10 year old son who was diagnosed with global
1:50
development delay, profound autism and an ID which is an
1:55
intellectual disability. He is non verbal and the most
2:00
beautiful child ever. I forced got a text message from
2:08
my sister and it was a really long message.
2:14
And she had said that she and some of the other family found
2:20
it really difficult to broach this subject.
2:23
And they've tried many different times in many different ways to
2:28
tell us this, that they taught Harry had autism.
2:34
I remember where I was standing, I was at the side of my bed and
2:38
my legs went from underneath me. I had never heard really the
2:45
word autism and didn't really understand it.
2:50
And my initial reaction was don't tell Terry because as
2:57
siblings, you can say the most horrific things to each other
3:02
and you can get over it, but you, your partner, can't say
3:07
anything bad about your family because that's just not allowed.
3:11
So when I looked up signs of autism, I've always explained it
3:18
like something you see on Facebook and people are like,
3:21
can you see the horse? And it might be an ape and you
3:25
can't see the horse for ages. And then you see the horse and
3:30
every time you look at that picture again, you cannot not
3:33
see the horse. And that's what I was like when
3:37
I was looking at Harry. I just couldn't Unsee it.
3:42
So I'm not very good at hiding my feelings.
3:45
If you're following us a while, you will know that I express my
3:48
feelings a lot. So even 48 hours was really
3:52
difficult or 78 hours to hold that in.
3:55
And Terry kept saying to me, what was wrong with you?
3:57
And again, I was trying to protect my sister and I didn't
4:02
want it to be true. And I said to Terry, I actually
4:07
can't remember if I said I think something's wrong with Harry or
4:12
I said the word autism. But his reaction was so
4:18
different than what I thought was going to be.
4:20
I thought it was going to be no way or like the Chico whore
4:26
saying that or And you just said to me, I don't know what I was.
4:31
Yeah, I know. Or But I was taken back and
4:36
recently on an interview, I questioned that.
4:40
And I never really asked you why you said that to me because I
4:46
wasn't expecting the answer. So can you take us back to maybe
4:53
when you first noticed it, when you had questions in your mind,
4:58
Was it when I said it to you? What was your reaction when I
5:03
said it to you? So take us right back.
5:08
Was there ever an idea in your mind that he was autistic or
5:11
there was something wrong with him?
5:14
I remember, so you don't really notice these things, right?
5:18
So from say zero months, zero days to when they're, when
5:24
they're born to two years of age or you know, just after that.
5:31
And I remember he was always that he could never stop moving,
5:39
which I didn't remember. I came, I became a father at 39
5:42
years of age for the first time. There was no other kids in my
5:47
family. It wasn't around children a lot
5:50
apart from friends kids, which is just like you're in and
5:53
outside. If you don't really notice the
5:55
the deep, you know the actual behaviors kind of thing, right?
5:59
And your stepdaughter was 14 then when you met her, So that's
6:03
right. There hadn't been any babies in
6:05
any of our houses for 14 years. Yeah, and Tay, Tay was becoming
6:10
a teenager and I was accustomed to being a guardian figure
6:17
there, which I love, still love her.
6:21
And even though she's she's 25 now, like, but I remember we
6:27
went away on holidays. I actually, you know, it was
6:29
actually I remember I brought him down As for me, for becoming
6:35
a father for me was scary because I now I've now have a
6:42
depend person on me, which I never had.
6:48
It was always me Lone Ranger, blah, blah, blah.
6:50
You know, there's no consequences, blah, blah, blah,
6:53
blah, you know what I mean? And no responsibilities and all
6:56
that kind of stuff. Now I have this person or I
6:59
remember having pride at the same time as well as fear
7:05
because I was like I didn't have much a relationship with me.
7:13
All that still don't and I've actually no relationship and I
7:19
suppose in one way I had to teach myself how to be a man
7:25
and. So you're determined to be a
7:28
good dad. Yes, and that's what I thanked
7:30
me on that far as well, because I learned how to be a good dad.
7:35
Great Dad. You know a great dad.
7:37
And so I brought it was very, it was a very proud moment for me
7:42
to go. I'm bringing him for his fourth
7:44
haircut. So I brought him down to Crumlin
7:46
Road to Ada and brought him in and he came in and he went that
7:55
I remember sitting him down in his chair and I remember the
7:58
scissors and the razor coming towards his head and just never
8:04
heard screaming like a hysterical.
8:07
It was absolutely unbelievably like it was like someone been
8:11
getting murdered. To be honest with you.
8:13
I, the poor Barber, had nearly needed counseling after she was
8:19
distraught. She was distraught, traumatized.
8:22
And I remember we got through the haircut, but I nearly had to
8:27
hold them so tight and I felt so bad because I was like, this
8:32
shouldn't be like this. You know what I mean?
8:34
Yeah. You're having to restrain him to
8:36
get a simple haircut like, you know, And the minute then the
8:41
razor stopped. We got through the haircut with
8:43
the razor stopped. I got him outside the barbers.
8:45
Not about it. He was OK again.
8:47
So was that your first moment of like, something's wrong?
8:50
Here. Well, that was a pure meltdown.
8:52
Like he went from that to that and I was just like, what's
8:54
going on here? Like, gentlemen, it's weird,
8:55
right? And then we went on holidays
8:57
then as well. You have to remember I did.
9:00
I did had no concept of autism. I didn't know anyone who had the
9:05
autism. I don't didn't.
9:07
And I remember us being away in 90, eight, 2007 then.
9:15
And you remember we went down to the kids disco and he'd be
9:20
looking in front of the lights to flicker and lights and be
9:22
doing all this mad stem and stuff.
9:24
But he kept dark and outside during that, kept running after
9:27
him and all I used to be slightly look at him doing the
9:30
D12 shuffle because we lived in dream at the time and in the
9:37
apartment and I was like I still the D12 shuffle look at him like
9:40
his little dance now. That's how naive I was.
9:42
I didn't know nothing right. I just thought our babies, they
9:45
just tried to run away all the time.
9:47
But little that I know, he was stemming.
9:49
Yeah. And I also used to know that his
9:51
fingers would always be like this look and they still always
9:54
there. I never know.
9:56
And I remember your dad grabbing a hold of him one day, right?
10:00
And he goes, he gave his hand a robe like that to massage his
10:07
hands. He goes, his fingers must be
10:09
raised. His hands must be really tense.
10:11
He says he's like this the whole time like that.
10:14
And I was just like, oh, that's not right.
10:18
Like. When was that?
10:20
You wouldn't remember. I remember you.
10:22
I just did always six hours you had me.
10:23
Dad got just gone. Let me give you a hand or up
10:26
there, gentlemen. How old was he like?
10:28
I was only like probably 3 or something like that, but I'm.
10:31
Sure, he was diagnosed before 3 so if we didn't know then.
10:35
No, but you're dead. No, I think it was after that
10:37
when we did know. OK.
10:39
But his fingers are always like this, John.
10:41
I mean, even before the diagnosis, but I remember going
10:45
into where we got where the diagnosis was done and to be
10:52
quite honest with you, I was known when I when your mom said
10:54
to me she was like, how do you feel?
10:56
And I was like, I don't know, because I have a cut off of me
11:01
emotions. The only one that brings out
11:04
emotion to me is Harry. Naturally, I cut myself off from
11:08
emotion due to my own upbringing and all that kind of stuff.
11:10
So let me go right back, OK? Because that's a journey in
11:14
itself. Because I was with you in that
11:15
room and I'm going to give you a version of I.
11:18
Felt like I was fake crying in front of your woman because she
11:20
was like looking for off me or something.
11:22
I didn't know how to react. Well, I mean, there's no real
11:26
book. It's.
11:26
I didn't know how to react, but if I felt I felt like I was like
11:33
this is mad, like I've haven't had I've gone 40 years nearly
11:36
well-being a dad and now I'm in like this situation here, not
11:43
feeling sorry for myself, but like this isn't the way I kind
11:47
of imagined this. You know what I mean?
11:50
I'm not talking about the not I love my son to death.
11:54
You know that I love you all to death and but I didn't ever
12:01
imagine that I would be like this.
12:04
And it took a long time for me to actually see the the
12:12
positives of it as well. That's a journey in itself.
12:17
So if we go back a little bit, was there ever a moment in your
12:23
mind before I said that that Utah, he has autism or there's
12:28
something wrong with him? Well, to be honest with you, I
12:32
didn't deal with it very well when that person said it to me.
12:35
Like so I was pretty absent in my mind sort of thing.
12:39
When I said it to. You.
12:40
No. Well, yeah, Well, back when the
12:42
diagnosis was. So I'm going back to in the
12:45
apartment when I said to you about the text message from my
12:48
sister. I can't really remember.
12:49
That and your reaction to me was, I think I was like, yeah, I
12:53
know. Or you weren't shocked by it,
12:56
which shocked me because I wanted to protect you from that.
12:59
Because I I didn't think it was real, but for some reason you
13:03
weren't shocked. I probably, it probably was I, I
13:09
don't really know to be honest with you, is this is what I'll
13:11
say to you. The more Aldriga, the more
13:14
visible it got. So this was another thing that I
13:18
found quite interesting that we've probably never spoke
13:22
about. I went into complete meltdown.
13:26
I cried my eyes out and I went to the local health centre
13:33
trying to speak to the nurse, the health nurse, you know, the
13:36
baby nurse, and nobody would see me.
13:38
I tried to get the doctor. I just wanted to talk to
13:42
somebody, anybody, just to help me.
13:45
Does he have it? Does he not have it?
13:46
Because I had no idea. That was a process.
13:50
Eventually we got to see a private doctor, Professor
13:53
McDonald, who still sees Harry. And she's absolutely amazing and
13:57
we love her so much. And when we went to that forced
14:01
appointment, what shocked me was, and I don't know if you
14:04
remember this, she was asking me questions like, does he look at
14:11
you? And I'm like, he does look at
14:13
me. And you kept stepping in and
14:16
going. He doesn't errand and I found
14:19
that really weird because everything that I said he no, he
14:25
is doing that you was like no, he's not.
14:27
The difference between what your perception of was and mine was
14:34
you had had Taylor so you have had experience of a neurotypical
14:40
child growing up where I have never had that.
14:45
So my only experience is of being a parent to an autistic
14:51
child. I know I'm a stepfather father
14:53
to Taylor, but I didn't see the actual baby and the infant part
14:59
of that. So it was probably harder for
15:03
you because you've already raised Taylor.
15:07
Do you know what I mean? Yeah.
15:08
But what I'm saying is is you saw the things that he wasn't
15:13
doing. So would it not be the other way
15:15
around that if I did have a child who was neurotypical and
15:20
done things according to the six month, the 12 month day like my.
15:27
I think you you struggled with the fact that it was real, where
15:33
I kind of kind of, as much as I hurt, I accept things easier
15:39
than you do. So this is this is what I mean.
15:43
What was it or how did you see things that I didn't?
15:49
What was it that you could be like nowhere and he's not
15:53
looking at you? So she said to me what he was
15:56
doing was looking around me. How did you see that?
16:00
And I didn't. Because he that'd be what he'd
16:02
be like with me. It wasn't just you, it was me as
16:09
well. No, no, I I get that, but I
16:13
found that in the room. So see the way you're saying you
16:15
were really disconnected. I didn't feel like that because
16:18
I felt. I am a disconnected person to
16:23
some what to to some extent I am.
16:25
Well, maybe that's how you were able to see things, maybe as
16:31
they were. So even with forms and stuff,
16:35
you were definitely able to do more matter of a fact than what
16:40
I was. So when I had forms or we had
16:44
forms, I would give them to you. Which is still the case.
16:47
Because you seem to be able to do.
16:49
Yeah, matter of a fact. Yeah.
16:52
Well, I, it's, I'm just, I just, I just do it and then I deal
16:56
with it. So.
16:58
I don't know whether that's just a meeting or it's just a man
17:01
thing, I don't know. After we went into the room, it
17:07
was a long journey. Professor MacDonald then moved
17:09
us on. It's a psychologist, speech
17:12
therapist, occupational therapist, behavioural therapist
17:16
that has to say for weeks to. That was the most frustrating
17:22
time of my life, I have to say, every Saturday morning.
17:28
Drove me absolutely bonkers going up there.
17:31
So you said that you were? I got, God forgive me for saying
17:35
this ball. I literally wanted to travel the
17:39
person every week. And what was it like?
17:45
Maybe it was just because it wasn't walking and I was getting
17:47
frustrated because I in my mind, in the back of my mind, maybe I
17:50
thought I will be OK. In other words, you know though,
17:54
you're not the thing that drives us mad Now.
17:56
I, he'll be fine. I think I was probably of that
17:58
same mindset back then, where now I know this is this is, this
18:04
is what it is like, you know what I mean?
18:07
So when you say it wasn't walking, you mean he wasn't
18:10
responding to? He wasn't responding and it was
18:12
the same thing and I was this and and you know, you're you're
18:18
getting frustrated because he's not developing.
18:20
He's he's stealing everything bore why you want them to do you
18:25
know what I mean? He's not, he's, he's just
18:28
literally walking around in circles.
18:30
And at that age, like gentlemen, he's walking around in circles,
18:34
he's repeating. He's no focus.
18:36
He's no, no, you know what I'm saying?
18:37
Like. The sleepless nights, the.
18:40
Cry, that's what I'm saying. Like it no, like it only is the
18:44
bad way. How we're sitting here together
18:47
today, even it's like. So.
18:51
Some sort of a a miracle. Because we weren't.
18:56
We weren't. We weren't.
18:59
We weren't dealing with it together.
19:01
I can tell you that. I was dealing with it my way.
19:04
You were dealing with it your way.
19:07
So tell us about that time. Tell us what I felt like for you
19:12
as a man, as Harry's dad. What were you feeling for Harry?
19:19
What were the emotions that were coming up for Harry, for you,
19:24
for the whole situation? Were you scared?
19:29
Were you sad? Were you lonely?
19:33
Yeah, angry, which really been sadness.
19:39
What were you angry about? I was sad for him and I still am
19:48
at the longer it goes. Like obviously I'm more educated
19:53
on things now and I know the gig.
19:55
I know what it is to be an autism.
19:59
So let's say for all the parents out there that are talking, are
20:04
listening, and they're where we were when they were two, and
20:08
they're feeling all these emotions.
20:10
And a lot of the times you feel guilt and shame because people
20:14
think that if you have these feelings, you mustn't love your
20:17
child, which is the complete opposite.
20:18
You love them so much. This is why you're feeling these
20:21
feelings. Can you articulate those
20:25
feelings? Can you?
20:27
Share that with people so they know that it's OK to feel these
20:31
feelings and they're not alone. Well, I have lads, I have lads
20:37
who text me on Instagram and by all means anybody who wants any
20:44
sort of what you call it, guidance.
20:46
I'm no guru in this field, but I have experience now of 10 years
20:51
and by all means, don't hesitate to contact me on Instagram or
20:55
wherever, Tiktok, any of them, Facebook, whatever.
20:58
I'll be only too happy to help. I found that the the best way to
21:02
to to deal with this kind of stuff is to share information.
21:05
And that's what we do, don't we for?
21:09
So you said you were sad and angry for Harry for his life.
21:15
I don't do. I don't.
21:16
I don't. I can't describe my feelings
21:21
back then. I can't.
21:26
I don't think that's true. I don't know, like I have a
21:29
court off in me where I just go into pull it over there and
21:34
never look at it again. So do you think that's what
21:36
you're doing? That's from Troy.
21:37
Yeah, probably, yeah. It's OK, You're like in a safe
21:41
place. I know I am but I still can't do
21:43
it like I'm programmed to switch off due to me out my own
21:48
childhood traumas. So would you like me maybe to
21:53
say what it was like for me as your partner watching you go
21:57
through that? I don't know.
21:59
I don't know what I went through.
22:02
So I guess. What I what I did now was I have
22:09
to look after this little boy, this little boy, and no matter
22:15
if he has autism or not, I have to look after him.
22:17
And that's what I did, and that's what I do.
22:20
I think you retreated into yourself.
22:23
Yeah, I think into. Myself destruct my old as a I've
22:30
done before. I think you internalized it, I
22:36
think. I personalized it as well when
22:40
you I felt like it was my fault that he had it because of the
22:46
way I lived my life. And then when I read on a on a
22:52
website that someone actually said something said that kind of
22:57
thing that knew my past said I did that young flown.
23:04
He has autism because he was a distandular.
23:07
I was just like it nearly it's stamped it on me head.
23:12
Do you know what I mean? That was my fault.
23:15
And I guess as your wife, that's the double whammy that like I'm
23:22
Horton, that you would feel like that.
23:25
And I also feel like as well that I don't feel like that's so
23:29
much now because me we've we've we've we've found a way to
23:32
communicate me and me. Boy, believe or not true, we
23:37
watch wrestling together. He loves it And or because I
23:44
didn't connect with my own that I was thinking to myself back
23:49
then. Never going to get a chance now
23:52
to connect with my own son the way I want to connect to get me
23:57
what I like. It's like what I've lost, what I
24:00
lost with my childhood is now going to happen with my son,
24:04
with me. Do you get me?
24:06
Yeah. That's what I felt like.
24:09
And I think even the fact that you said you blamed yourself.
24:15
I blame myself. I I talk to myself.
24:17
Is it because of the way I live my life and the things I did?
24:20
And you know what? I'm getting out like the road I
24:24
went down. Is this something in me that
24:28
made this happen? But I think I also felt that
24:32
too. I think a lot of parents think,
24:37
is there something they don't? Is this something they cause?
24:39
Like they sound so stupid now. Plays in my mind all the time.
24:44
One of my aunties said to me I heard Peppa Pig causes autism
24:50
and sometimes I go. Is that why?
24:53
Because he watched it and I let him watch it when he was small.
24:55
Yeah, but you'll also hear loads of different conspiracies about
24:58
Peppa Pig, you know, like. That's what I mean about, I
25:02
think as a parent, you think, is there something I could have
25:07
done to change this? There's.
25:10
No explanation for this because we've spoke to all our families
25:21
who have two and three kids. One will have autism, 2 won't.
25:25
All three will have autism, 2 will have autism and 1 won't.
25:32
But yet they're the same parents.
25:35
It's the same process. So what, what is it?
25:40
I don't, I'm not getting into this controversial thing about
25:43
vaccines and all that kind of stuff, right?
25:46
For me personally, I don't know what it is, but what I've done a
25:53
lot of research over the years and I do believe in the physical
25:58
sense of the cause of it is it's a bacterial thing that when we
26:04
are born, we're born with two forms of bacteria in US,
26:09
intestinal tract bacteria and a colonic bacteria.
26:14
They never mix in the neurotypical person like
26:18
ourselves or occasionally the colonic bacteria travels up into
26:23
the intestinal and a forms of bacteria and other bacteria
26:27
which messes with the whole nervous system and brain.
26:31
That's the research I've kind of read about and I kind of believe
26:35
that there's a thing about that because of the trouble we've had
26:38
where Harley where his goal. Yeah, we've had a lot of
26:41
trouble. And I believe since we've had
26:45
our friends, our great friends Catherine come on and the energy
26:50
doing the energy healing and we've somewhat sorted out his
26:53
goal and his brain function has actually improved.
27:00
And I think why you say you shut off emotionally and we both went
27:09
our separate ways for a long time emotionally.
27:12
Yeah, Emotionally, yeah. Which is not.
27:15
It's like I'm, I'm, I'm very, very prone to doing that.
27:20
But you were way more practical than I was.
27:23
So while it looked like you weren't per SE grieving or you
27:29
Baldy, you were dealing with that on the side, but then being
27:35
really practical on the other end, which I guess.
27:39
How was I being? How was I being practical?
27:40
Like what I said about like filling out the forms, it is
27:45
what it is. Yes, Aaron, this is happening
27:47
where I was like, no, I don't think that's.
27:49
Happening, yeah, because I tried not to project too far into the
27:54
future because you know what I'm like, even with like my life in
27:59
general, I live kind of from day-to-day where you think more
28:05
of the big picture. You're a big picture thinker
28:08
where I'm day-to-day due to the way I've lived my life, right.
28:13
So I would just kind of nearly show off the whole what's going
28:17
to happen when we are not around anymore.
28:20
Back then I would have, I would just be gone.
28:24
Just deal with this now. Don't think about tomorrow,
28:27
gentlemen. Like and carry on and on and on
28:29
like that. I think one of the hardest
28:31
parts. And I think that's how I that's
28:34
the only reason and how I coped because it was like I was nearly
28:37
in robotic mode. Do you get me?
28:40
We are carrying a lot. Oh mega, mega stood mega.
28:44
So what what? I know I've asked you and you're
28:50
like, I don't know how to maybe articulate it, but I would say
28:55
for a good two years, I was grieving in one room and you
29:00
were grieving in another. And we had a really sick baby in
29:03
the middle who didn't sleep and cried and was in a lot of pain
29:07
and a lot of meltdowns and we couldn't go anywhere.
29:10
It was really lonely. How low did you go and how did
29:20
you come back from me? What made you come back?
29:23
Well, you know how low I went. Yeah, I, I and I'm not, I'm not
29:28
asking you to talk about that area, but maybe in your feelings
29:32
of it, like obviously you are in a really bad place and you are
29:38
hiding it and suppressing it. So you are really, really low
29:45
and how did you come out with that?
29:48
So do. You know how I come over.
29:51
I got to such a low point trying to numb the pain of it that I
29:58
could no longer know. And it got to a stage where I
30:04
was in my mass and I was in a really now bad place emotionally
30:14
in my mind and everything else dark.
30:18
And I remember doing what I did years ago back in probably 2009,
30:26
and I just closed my eyes and I asked for help.
30:31
And that's how I tapped into somehow kind of improving,
30:38
gentlemen. And I think.
30:41
That's why what you say. How are we still together?
30:45
The miracle would be. It's it's, it's, it's obvious.
30:50
It's obvious to me. Yeah, that whoever is up there,
30:55
the spiritual being, whoever it is, I don't know who it is.
31:01
I just asked for a good and help and whatever it was helped me
31:09
out of the dark and helped me to man up and be a man and do your
31:18
father to you. He didn't ask to be born.
31:21
You had him so the duty to this, this little boy.
31:27
And that's, that's the way I live my life.
31:28
So I actually see my son as saving me from myself because I
31:37
never thought I never really cared about myself all that
31:40
much. I didn't care whether I lived or
31:42
died before at one stage of my life.
31:45
I didn't care day in, day out. But Harry has taught me that
31:51
it's not about you that do you get me?
31:53
No, he hasn't said that to me, like obviously, but like, you
31:59
know, I'm going to, I'm going to bring it forward, right?
32:00
Because this is like work, work. We were talking about him not
32:05
looking at you in the face and all that kind of stuff.
32:08
I'm going to get into a light hearted part of this now, right?
32:11
Right. Why are you smiling now?
32:13
I. I I am smiling.
32:15
But I think I feel like you're bringing me into a place where
32:18
it's like I can't go any deeper with you.
32:20
No, not. In it?
32:21
No, not at all. I'm.
32:23
I don't know how to. What, what the reason why I'm
32:27
saying before we jump to that in my mind is because I think the
32:32
statistics might be 90% of couples with children with
32:40
disability. The divorce rate is like 90%.
32:45
So I think it's really important that we talk about how hard it
32:51
was, how much it pulled us apart and how we really had to go to
32:59
the depths of despair and come together.
33:04
Because there's many couples out there who are dealing with this
33:09
separately, even though they're in a relationship or on their
33:12
own and they don't have anybody. And not only for them, but for
33:17
their friends, for their family. Like it's such a lonely Rd.
33:23
So whether it's like lonely in your relationship, whether it's
33:26
lonely with your friends, you just want people to try and
33:30
understand. So that's what I'm trying to
33:32
make people be aware that you. See that?
33:35
Try and show up for those people.
33:39
To me didn't really affect me because I've in in to in my
33:44
mind. I've been on my own for most of
33:46
my life. Do you get me?
33:49
But you couldn't be on your own in this one.
33:52
No, I couldn't. What I mean is though, I've I've
33:56
lived my life on my own to an extent.
33:59
But you had to learn how to not live your life in your.
34:02
Yeah, yeah. And this is what I'm saying as
34:06
couples, as friends, as sisters, as aunties, as uncles, as
34:11
nannies, as granddads, you also have to learn how to be there
34:16
for the person with the disability and for the parents.
34:20
You you can't expect people to be the way you want them to be.
34:26
I find that really difficult. I know you do.
34:28
I find that. Really difficult.
34:30
I don't because I don't have expectations on people.
34:33
I just so, so I guess that's why because I wanted to touch on
34:39
that to be like it's really it's a heavy load, especially in the
34:46
early days. Yeah, in the early days, yes, it
34:48
can be lonely, but I think that's why, that's why it's so
34:52
important for that's why I'm saying to people we need to
34:55
share information with people. Go and do you know, like we go
35:00
to our local HSE place and I'll do every single course they give
35:06
me. You want me to be there, I'll be
35:08
there. Yeah.
35:09
I will be there because I will learn absolutely every single
35:14
aspect of this condition. So as I can manage it, I'm never
35:19
going to be there, but I will manage it to the best I can.
35:23
And the things that I have learned, I feel privileged that
35:27
I'm able to share it with other fathers.
35:29
Do you know what? I mean, and that's and.
35:30
Mothers, if they want to, if they want to.
35:32
So the start of our journey, the start of your journey, the start
35:36
of Harry's journey is such an important part of our story
35:40
because there is a lot of people still there going through that
35:43
pain that feels so isolated. It's really hard for me to
35:46
describe them them days because I I think I just numbed myself
35:50
so much. Yeah.
35:51
In it that I, I, I just put 1 foot in front of the other.
35:58
I got up every day and we dealt with the pain of it.
36:03
We we went through the pain of it.
36:05
And, and again, I remember this, this time we were in an hour
36:11
Cumberland Hospital and I had to come home and they kept sending
36:20
us home all the time. I was like, there's nothing we
36:21
can do. And I was like, you wouldn't
36:23
leave a dog like this. And I came home and I literally
36:29
like collapse with that. I can't, I can't watch him go
36:31
through this anymore. I get I can't.
36:33
There's no one. It's there's no more scary place
36:35
to be. That was very, very, very, very
36:39
hard. And I remember you getting on
36:43
your knees and hot because I had I'd given up.
36:46
I had given up trying to hold it together.
36:49
We're. In Lucan at this point.
36:51
Yeah, I remember because. Jerry was there.
36:53
Jerry was there and you just came in and held me and you're
36:58
like, I've got this, we've got this.
37:03
I don't even know what you actually.
37:04
Said to me, I know exactly what I said to you.
37:06
What did you say? You've kept saying I me because
37:12
you're so used to raising Taylor on your own now that and I just
37:17
you are going on available. I have to deal with this now you
37:19
must do this and I will have to do this and this this this.
37:22
I just turned around. I just, I don't mean to be like
37:26
cheesy around like that. You know what I mean?
37:27
Like, well, like I just grabbed a hold and I said we and on your
37:32
own here. And that was definitely changed
37:34
like that. Way.
37:35
This is a waiting. This is not an IU or meeting.
37:39
This is a waiting. We are a team and we will do
37:43
this together. That was definitely a changing
37:46
moment for me because I feel like a lot of the time over the
37:52
course of my life have been left on my own to deal with things.
37:56
I feel like it is my responsibility and if I don't
37:58
look after it, that will be desolate or whatever.
38:04
I don't know, starving and left to the to the wolves.
38:07
I don't know, ever. Going to happen.
38:09
But that. I see.
38:10
I know for a fact because of the where I have been in my life,
38:17
that will never happen to us. Yeah, because if all else
38:22
failed, I would sing on the side of the street again if I had to.
38:27
I don't even think it was financially though it.
38:30
Was I know, but you know. I just felt like this heaviness
38:35
over me and I felt so alone and all.
38:38
And obviously you felt so alone and all.
38:40
And that was the moment where we came together.
38:44
That was the moment. But we just, we didn't just come
38:47
together, we had to make a decision.
38:49
That's what. I mean together so.
38:53
Because the reality was her, the only way we had a little bit of
38:58
a life was was if one of us was at home with the baby and you're
39:02
all went to so. So when we were together minding
39:05
the baby, there was so much heartache and crying and
39:09
meltdown and. Also like 2 bodyguards watching
39:12
every single movement that he makes that he doesn't harm
39:15
himself. So there was relationship.
39:18
The point I'm making, and this is the advice I would give to
39:20
anybody that's going through this kind of stuff now as
39:24
couples now, if you're going through this kind of stuff, I
39:27
would say take away all of the stress due to the mind of the
39:35
child, the children, the life, the work, the money, all that
39:41
kind of stuff. Go somewhere together as the
39:45
couple that you started out as. And if you do enjoy each other
39:50
company still, you can do this. Yeah.
39:55
And that's how I knew we were we were going to do it.
39:59
And that's when instead of maybe.
40:02
With that's how I know we we love each other because we enjoy
40:04
being with each other on our own like.
40:07
Yeah, do. You know what I mean?
40:08
Like, yeah. And if we didn't, well, then we
40:10
knew. Well then, obviously this is not
40:12
going to work like gentlemen. And you do have to give a time
40:15
as well because there's a lot of pencil banger with.
40:19
Autism, it is time, it's a long time.
40:22
It everything happens at such a slow rate that if you think
40:28
about it too much you will actually drive yourself insane.
40:31
I would I would say to anybody who's struggling with this, try
40:34
and form a routine that works for you.
40:37
What works for us may not work for you.
40:40
Your child's traits may be different to our child, our
40:43
child's traits. Find the routine.
40:47
Don't let anyone else tell you different.
40:48
If it works worker, it's all about being comfortable and also
40:55
you haven't as less stress as possible.
40:57
So that's what I would say to people, find out what works for
41:00
you and also if it does work for you, share it with someone else
41:05
because it may work for it may work for them as well.
41:08
And that's what we do as well as a couple.
41:10
We come together quite a bit when things are like, OK, this
41:12
is not working anymore and we reassess it because Harry has
41:17
grown so much, especially in the last one.
41:21
Yeah, that's why I want to. I want to like.
41:22
Yeah, I want to finish. Off on one thing.
41:24
Sorry, I'm not finishing off what I mean.
41:26
Talk about his amazing this. This particular phase of this.
41:30
Yeah. Discussion.
41:31
Right. One sad thing that I used to.
41:37
Really. He was.
41:40
I've never actually heard him say that.
41:46
I've never been called that. You know what I mean?
41:50
Like, I hear Taylor calling you Ma Ma.
41:52
You know what I mean? I used to call me all my ma, but
41:59
I've never, I've never heard my son saying that.
42:03
And that hurts me. It does hurt me, but you know
42:08
yourself. The way it makes up for it now
42:11
is that he comes up to me some. He comes up to me actually
42:16
pretty regularly. And he just comes up to me like
42:19
this look. And he looks at me this close in
42:21
the eyes and he's talking to me through sight, through the eyes.
42:25
It's just so I can't. I can't put words on it, just
42:31
cannot put words on it. How I feel when he does that.
42:34
It's like that. Heaven is.
42:35
I just cannot put words on how he makes me feel when he does
42:37
that. Being in His presence makes you
42:41
stop and be so connected with Him.
42:46
When he lets you into his world, you actually feel inferior.
42:51
Feel like there's no one else around yet?
42:53
You feel inferior. It's like the most precious
42:56
feeling in the whole entire world.
42:59
I know and I know all the parents who have said the same
43:02
to me and and we do be sitting there and and then we were
43:05
talking about and we're like Jesus, this happened.
43:09
And I remember someone who we know lady, we know she lives
43:12
around the area. She texts me, she goes and such
43:15
and such went and she stayed. She stayed for like 10 minutes
43:19
and I was like no way. Unbelievable.
43:22
Like the miles was like. She had gone to her Deb's, you
43:26
know, this kind of thing. It was just damn things, you
43:28
know? So it's step three.
43:29
It it has made me appreciate every single moment whether it
43:34
be small, big, whatever. Like this weekend we had four
43:39
parties, OK, And there has been times when we have gone to the
43:44
door of a party and has much as he wants to go in there, he
43:49
desperately wants to connect with the kids, he wants to play.
43:52
He just can't bring himself to go in no matter how hard we try.
43:57
And we do try and we do show up. And this weekend?
44:03
I was just like the bell of the ball, wasn't he?
44:06
Tell them what he even What? Yeah.
44:08
So he started his diet hasn't proved a lot.
44:12
He's eating fruit now he's eating noodles, he's eating
44:15
rice. He used to choose the McDonald's
44:17
chips and crisps. The end.
44:19
So we. Couldn't go anywhere.
44:21
Calves the worst possible. I know it's still food, but you
44:27
know, not amazing food, right? But, umm, he's now gone from
44:35
that. Then he's right.
44:36
He started eating onion rings. I'll have it out.
44:39
Spring Roll. Dip it into the Curry sauce.
44:42
Me or I was. Like what the is going on here?
44:46
And the great thing as well at the party was, was people that
44:49
were at the party that we don't really know that well.
44:52
We're coming up to some and they were so proud of them because
44:56
they they have seen it. They've seen the heartache.
45:00
When you know the videos I'd post up where he's inside
45:04
watching all the boys his age play their basketball, you know,
45:10
and he wants to be out with them.
45:11
He's. Definitely.
45:12
He's definitely gone past that now.
45:13
Yeah. And he's he's at the stage now
45:16
where he's like, he'll actually come up to you and go, I'm done
45:20
now you. And I was like, son, you know,
45:22
I'm done. Let's go home and watch some
45:24
wrestling. You know what I mean?
45:27
Like. Like we thought, the days have
45:28
never come where he's like watching a movie, like remember
45:32
the first time, like he sat with me and watched Polar Express, or
45:35
like the one where like he'll get in now in between the two of
45:39
us, that's his favorite. He loves that, yeah.
45:41
Yeah, yeah. And he, like, wants to get comfy
45:43
or like when we're napping. Yeah.
45:47
What does he do when we nap? Wakes us up.
45:50
He hates when you nap. He wants to like wake you up.
45:54
He is come on leaps and bounds. But that doesn't mean that we
45:59
still don't get hangs like. Well, you see, the problem with
46:04
Hardy is this and external pain. He doesn't seem to feel all that
46:09
much, like a coat on his leg. He'll feel a little bit and he'd
46:12
kind of rub it, but he won't let you touch it.
46:13
Now, internal pain, absolute torture it seems for him.
46:18
Yeah, that's the worst thing for him.
46:21
But I also think for us, we're learning as we go on that, you
46:26
know, we will adapt and adjust and we will come to terms with
46:31
things. But sometimes it might hear.
46:34
We do. We have come to terms with
46:36
things, but we're autism. It's like kids in general, like
46:43
developments, like how he's going to be going into hormonal
46:48
changes now. And he already is.
46:51
And he is also not as small as he used to be.
46:54
I can't just pick him up now. Yeah, he's like, he's heavy
46:57
gentleman. And it's it will bring its own
47:04
kind of difficulties and struggles.
47:08
But I, I, me personally, my whole goal in life is to make
47:14
money to support him and you and Tay and deal with things as they
47:22
happen, you know, So that's the goal.
47:27
We keep fighting. We fight for whatever we can get
47:32
out of the system as well. And if you have any questions or
47:37
you have anything you'd like to ask us or even if you have any
47:40
tips for us, please don't hesitate to get in touch you to
47:43
comment the podcast itself and leave a comment below.
47:48
And remember, no matter what part of this journey you're in,
47:54
what our parents do, you understand and relate to what
47:58
you're going through. And while there is many lows,
48:04
there is some super highs. And what are the things I'd like
48:07
to say? Sorry loved, needs no words.
48:10
Oh, that's. I think that's a good one to
48:13
finish up. I think it is, but also before
48:16
we finish. Always has to get the last word
48:19
in. Well, it was going to be a
48:20
really good one because I'm only joking.
48:23
I don't really think I ever take a moment to say how great of a
48:31
day are. Like you said that you like you
48:36
blamed yourself but I think he handpicked you.
48:40
Totally, he said. Because he is so lucky to have a
48:45
dad like you. Thank you.
48:46
And he's just lucky to have a man like you.
48:48
We have our, we have our team going on our two, our two person
48:54
team. It's.
48:57
Probably too much emotion for me.
48:59
I'm don't do and did we see? Let's do a joke now.
49:02
Tiny Terry. Tiny, Terry.
49:05
Tiny. Terry with the big heart.