"You've Always Just Been This Way."

WEBVTT - This file has cues.

00:00:00.000 --> 00:00:04.560
Hey, how's it going?
If you're new here. Welcome.

00:00:04.720 --> 00:00:08.160
Something Shifted is about
identity after the interruption.

00:00:08.160 --> 00:00:12.040
It's about who we become after a
lifequake hits.

00:00:12.040 --> 00:00:16.640
And the stories we tell ourselves.
When everything changes.

00:00:17.320 --> 00:00:21.120
And I think you're gonna like it
here.

00:00:21.960 --> 00:00:25.920
My name is Sean,
and this is Something Shifted.

00:00:27.240 --> 00:00:35.120
Today's story belongs to Jess.
It was more, I guess, like meeting

00:00:35.120 --> 00:00:39.400
myself and learning who I really was.
And I think I'm still in the

00:00:39.400 --> 00:00:44.680
process of maybe accepting it.
Probably still in a bit of a

00:00:44.680 --> 00:00:50.320
mindset of I can fix every little
thing that I struggle with,

00:00:50.320 --> 00:00:53.040
with it and everything that's
mildly debilitating.

00:00:53.360 --> 00:01:00.450
That's next. Right after this.
If you're one of those people

00:01:00.450 --> 00:01:04.090
that believe rest is a luxury,
we can't be friends.

00:01:04.290 --> 00:01:07.490
Real change is exhausting.
And even when your mind is ready,

00:01:07.490 --> 00:01:10.850
your body has kept the score and
it can't keep up without proper

00:01:10.850 --> 00:01:13.490
recovery.
So I've started taking Solal's.

00:01:13.490 --> 00:01:16.690
Magnesium glycinate.
It helps with muscle energy,

00:01:16.690 --> 00:01:20.890
nervous system support, and I'm
honestly feeling a lot less fatigued.

00:01:21.050 --> 00:01:23.890
You can learn more about Solal and
their full range of supplements

00:01:23.890 --> 00:01:34.090
for healthy aging on www.solal.co.za
I want to let you in on some of

00:01:34.090 --> 00:01:37.170
the Something Shifted behind the
scenes action.

00:01:38.210 --> 00:01:41.370
Firstly, I always talk a little bit
of smack with the guests as we're

00:01:41.370 --> 00:01:46.090
testing microphones and settling in.
It's the S24 ultra,

00:01:46.090 --> 00:01:51.930
but the Google Pixel is really nice.
And Jess knows a lot about tech stuff

00:01:51.930 --> 00:01:56.530
and videos and social media content.
It's part of her career.

00:01:56.850 --> 00:02:02.860
And also she's married to Grant,
who is a serious tech geek.

00:02:04.860 --> 00:02:09.420
I say very lovingly.
I actually just got the flip,

00:02:10.460 --> 00:02:16.900
but I haven't brought myself to
switch over because any change takes

00:02:16.900 --> 00:02:23.140
me like a whole month to get used to.
We just got standing desks and

00:02:23.300 --> 00:02:27.140
I'm dreading it because I know
it's it's a big change and I

00:02:27.140 --> 00:02:29.420
just don't want to do it.
So they're just standing there

00:02:29.420 --> 00:02:34.940
and they're boxes not being used,
because I can't bring myself to redo

00:02:34.980 --> 00:02:41.180
cable management or move things
around. Jess is married to Grant.

00:02:41.300 --> 00:02:44.860
Grant is one of the best people
I know, which is why I asked him

00:02:44.860 --> 00:02:49.460
to be the best man at my wedding
more than a decade ago, and so we

00:02:49.460 --> 00:02:54.620
were very happy when he found his
person a couple of years ago. Jess.

00:02:55.740 --> 00:02:59.480
Now Jess has worked many jobs while
she was studying fashion design,

00:02:59.480 --> 00:03:03.160
and she was working in marketing for
her fashion house before Covid hit,

00:03:03.160 --> 00:03:09.520
which is when she met Grant.
And then it was just a sort of

00:03:09.560 --> 00:03:13.760
natural transition from we're sitting
at home playing games now, we're

00:03:13.760 --> 00:03:16.520
doing it socially and streaming.
And then that picked up and

00:03:16.520 --> 00:03:21.360
became a career,
and then the rest is sort of a blur.

00:03:22.520 --> 00:03:28.000
And now I somehow do social media
and video production, and I've just

00:03:28.000 --> 00:03:31.920
learnt a whole lot of things along
the way, and the entire degree and

00:03:31.920 --> 00:03:37.080
everything I studied, I use never.
I also want you to know that Jess

00:03:37.080 --> 00:03:43.160
and Grant are parents to the lovely
Jamie. She's she's really funny.

00:03:43.600 --> 00:03:47.800
Um, unintentionally so, but also
sometimes quite intentionally.

00:03:47.840 --> 00:03:50.400
Like you wouldn't think a three
year old's jokes would be good,

00:03:50.440 --> 00:03:54.200
but they're actually, every now and
then, quite funny, which is great.

00:03:54.530 --> 00:03:59.610
I'd like to vouch for Jamie's sense
of humor, since she found a magic

00:03:59.610 --> 00:04:03.250
stick in our garden a couple of
weeks back and started creating

00:04:03.250 --> 00:04:08.010
magic spells that turned adults
into frogs. If you were lucky.

00:04:08.010 --> 00:04:12.610
And couches if you weren't.
And then there's.

00:04:12.650 --> 00:04:14.930
Yeah, there's a lot of her.
That's definitely her dad.

00:04:14.930 --> 00:04:19.250
Like,
they both love talking about things.

00:04:19.290 --> 00:04:22.610
I took her with me to get my
nails done the other day, and she

00:04:22.610 --> 00:04:29.050
spoke for 45 minutes straight,
nonstop. Didn't take a breath.

00:04:29.250 --> 00:04:31.850
The nail tech was.
You could see she was probably

00:04:31.850 --> 00:04:35.210
so happy that we left.
Um, and I did give her a really

00:04:35.210 --> 00:04:40.690
nice tip for basically having a
toddler soundboard over for so long.

00:04:41.250 --> 00:04:44.810
Um, but she's also, like,
really creative, like Grant,

00:04:44.810 --> 00:04:48.490
and she loves drawing and she's
so into even at three.

00:04:48.530 --> 00:04:52.010
She understands like animation.
And she when we watch an animated

00:04:52.010 --> 00:04:55.100
movie or especially stop motion.
She wants to watch the behind

00:04:55.100 --> 00:04:58.420
the scenes and then see how
everything's made and done.

00:04:58.420 --> 00:05:01.740
And apparently this holiday we're
going to make our own movie.

00:05:02.380 --> 00:05:06.660
Um, I don't think she understands
how much work goes into that.

00:05:06.660 --> 00:05:11.180
And it's not a ten minute job,
but we'll see.

00:05:12.220 --> 00:05:17.780
Three amazing people with so
much personality and enthusiasm

00:05:17.780 --> 00:05:22.660
and kindness.
So it's easy to look at them and

00:05:22.660 --> 00:05:28.100
assume that life is easy.
But the past couple of years

00:05:28.100 --> 00:05:30.780
have been incredibly hard.

00:05:35.980 --> 00:05:40.060
Parenthood is sometimes described
as the roughest hood you'll ever

00:05:40.060 --> 00:05:43.660
live in, and no matter the books
you read or the classes you take,

00:05:43.660 --> 00:05:47.260
nothing can quite prepare you for
the physical onslaught of it all.

00:05:48.140 --> 00:05:53.870
Jess had a really challenging
pregnancy where she felt ill for

00:05:53.870 --> 00:05:58.910
most of it and as a new mum,
Jess wasn't coping at all.

00:05:59.670 --> 00:06:06.030
I think a lot of people might
understand the feeling of losing

00:06:06.030 --> 00:06:08.470
your temper, for example.
This is beyond that.

00:06:08.470 --> 00:06:12.990
This is you often blank out like
I have no idea what I'm doing or

00:06:12.990 --> 00:06:17.470
saying.
We at a stage I had to when

00:06:17.470 --> 00:06:20.110
things were really bad,
I had to always sit in the back of

00:06:20.110 --> 00:06:23.750
the car with the child locks on
because I would bolt into traffic.

00:06:23.750 --> 00:06:28.550
I'd just be having a meltdown.
And it's this overwhelming panic

00:06:29.590 --> 00:06:31.550
where you almost feel like you
need to get out of your body.

00:06:31.550 --> 00:06:35.270
And so I would just bolt and run
and ground would have to stop the

00:06:35.270 --> 00:06:39.550
car and like, stop other cars.
This was not how Jess pictured

00:06:39.550 --> 00:06:43.390
motherhood, and it certainly wasn't
the idea of parenthood that she was

00:06:43.390 --> 00:06:48.390
sold through rails and rails of
perfect parenting on social media.

00:06:48.720 --> 00:06:52.200
So I obviously was not doing.
Ma'am,

00:06:52.200 --> 00:06:55.440
you couldn't understand what was
happening and I couldn't understand

00:06:55.440 --> 00:06:58.720
what's happening to myself.
And I kept saying,

00:06:58.720 --> 00:07:02.800
I know parenting is supposed to
be difficult, but this is crazy.

00:07:03.040 --> 00:07:06.080
This is just like nothing's
working and nothing's helping.

00:07:06.840 --> 00:07:09.360
And I got into, like,
I think a bit of a hole of despair

00:07:09.360 --> 00:07:12.720
where I thought, what have I done?
And this is obviously not for me.

00:07:12.720 --> 00:07:15.280
And I'm the worst parent and the
worst person and the worst

00:07:15.280 --> 00:07:19.880
partner on earth.
I have yet to meet a parent who

00:07:19.880 --> 00:07:22.840
hasn't at least once felt like
they weren't coping.

00:07:23.200 --> 00:07:26.760
For most people, though,
one night of decent sleep and some

00:07:26.760 --> 00:07:31.040
good coffee can erase that feeling,
albeit temporarily.

00:07:32.240 --> 00:07:35.400
But that's not what these
meltdowns felt like.

00:07:35.680 --> 00:07:40.520
And Jess was having them frequently.
You know, it's it's not really

00:07:40.520 --> 00:07:43.560
something that's as controllable,
I'm gonna say, as controllable as a

00:07:43.560 --> 00:07:46.400
temper, because a temper sort of
is something that you can lose,

00:07:46.400 --> 00:07:52.100
but you can also take a few breaths
and control, whereas a meltdown by

00:07:52.100 --> 00:07:55.100
the time you're having it, there's
nothing you can do to stop it.

00:07:55.100 --> 00:07:58.660
It's a train going off the tracks.
You kind of just almost like a siege.

00:07:58.660 --> 00:08:02.740
You have to let it just happen and
pass and make sure you do it as

00:08:02.740 --> 00:08:06.940
safely and as away from people,
whatever you need as possible.

00:08:08.060 --> 00:08:12.020
But, um, it's hard to describe what
it feels like because it's just

00:08:12.020 --> 00:08:16.060
like an overwhelming sense of fear.
And then you black out and then

00:08:16.060 --> 00:08:19.980
you come to and you're exhausted.
And sometimes it can take like

00:08:20.020 --> 00:08:25.220
two weeks to recover from that.
So this this is not what most

00:08:25.220 --> 00:08:31.140
parents feel or do.
Jess was having a really hard time,

00:08:31.140 --> 00:08:35.940
which meant Grant was having a
really hard time and so was Jamie.

00:08:36.700 --> 00:08:42.580
This was a lonely,
scary season and they were desperate.

00:08:43.060 --> 00:08:49.110
They needed something.
Anything and that's something

00:08:49.110 --> 00:08:57.550
ended up being a diagnosis.
I'm going to let you in on even

00:08:57.550 --> 00:09:00.550
more of our behind the scenes,
because there's this little ritual

00:09:00.550 --> 00:09:04.430
that I go through with each of
my guests, and it always happens

00:09:04.430 --> 00:09:09.550
before we start our conversation.
And then, of course, I cut it out

00:09:09.550 --> 00:09:15.150
and you never hear it until now.
You see, I ask each of my guests

00:09:15.350 --> 00:09:18.750
to describe the term life quake
in their own words.

00:09:19.030 --> 00:09:24.270
If I had to give you the task of
writing the description in

00:09:25.110 --> 00:09:28.190
Merriam Webster's dictionary for
the word life quake,

00:09:30.070 --> 00:09:34.310
how would you describe that? Oh my.
Goodness. What comes to mind for you?

00:09:39.350 --> 00:09:52.040
It would be a Fashion in your life
that is caused by external factors,

00:09:53.000 --> 00:09:59.520
and it's on you.
Whether you shake with the quake

00:09:59.680 --> 00:10:04.720
or if you fall in the cracks.
Jess's definition sounds like a

00:10:04.720 --> 00:10:08.480
proper dictionary right up,
and she's certainly the first

00:10:08.480 --> 00:10:13.000
guest to use the word fission.
In fact, she might be the only person

00:10:13.000 --> 00:10:18.640
I've ever heard say that out loud.
I read dictionaries for fun as a kid,

00:10:18.640 --> 00:10:23.960
which is shocking that no one's ever
diagnosed me for something because

00:10:23.960 --> 00:10:28.320
I thought that was a fun Tuesday.
Sitting and reading a dictionary.

00:10:28.680 --> 00:10:35.560
As a kid, Jess loved words.
Words can give us power and freedom.

00:10:35.840 --> 00:10:38.880
Having the right words help us
connect with others,

00:10:38.920 --> 00:10:44.010
allowing us to express what we're
thinking and feeling especially

00:10:44.010 --> 00:10:49.490
when we are thinking or feeling
things others aren't for Jess.

00:10:49.650 --> 00:10:53.810
The word autism provided a lot
of answers.

00:10:53.890 --> 00:10:58.090
So the diagnosis basically
happened after we had Jamie.

00:10:59.250 --> 00:11:02.850
Um, which is actually quite common.
I've found through the therapy

00:11:02.850 --> 00:11:07.970
that people often are diagnosed
after kids because you are very

00:11:07.970 --> 00:11:11.770
capable of accommodating yourself
through life and sort of masking

00:11:11.770 --> 00:11:18.970
and maybe being okay to a point
until you have kids, which is a

00:11:18.970 --> 00:11:23.450
difficult thing for anyone.
Um, it comes with a very

00:11:23.450 --> 00:11:25.930
specific set of challenges,
and that was sort of the thing

00:11:25.930 --> 00:11:29.210
that then pushed me over the edge
from being able to sort of cope,

00:11:29.210 --> 00:11:36.370
to not being able to cope.
Getting to the diagnosis was a

00:11:36.370 --> 00:11:40.610
complex journey in itself.
The journey started by making an

00:11:40.700 --> 00:11:44.500
appointment at the neurodiversity
centre for an assessment.

00:11:44.860 --> 00:11:49.780
That was a month of of going back
and doing multiple assessments

00:11:49.780 --> 00:11:53.340
and sitting with a therapist and
going through 200 questions a

00:11:53.340 --> 00:11:58.620
day and then working with an OT
and doing sensory tests.

00:11:58.620 --> 00:12:01.180
And it was just the craziest
moment of my life.

00:12:01.180 --> 00:12:04.260
And then after that,
you get a 12 page report that tells

00:12:04.260 --> 00:12:10.580
you what sort of autism you have,
and R and R and what level,

00:12:10.620 --> 00:12:14.340
because there's all of those
things and what sort of sensory

00:12:14.980 --> 00:12:19.020
processing disorders you might have,
and all of the other comorbidities

00:12:19.060 --> 00:12:22.300
like I have alexithymia and a
whole bunch of other things.

00:12:22.820 --> 00:12:28.700
Alexithymia is a personality trait.
It's characterized by difficulty

00:12:28.700 --> 00:12:31.380
identifying, describing,
and understanding one's own

00:12:31.380 --> 00:12:35.780
feelings and distinguishing them
from bodily sensations.

00:12:36.220 --> 00:12:40.640
There is a bit of a test where they
give you sort of eyes or mouths

00:12:40.640 --> 00:12:43.800
or portions of people's faces,
and they ask you to identify their

00:12:43.800 --> 00:12:50.200
motion. And I got zero zero correct.
It's I've I've even done it with

00:12:50.200 --> 00:12:51.960
Grant.
And he would very obviously say,

00:12:51.960 --> 00:12:53.880
oh, that person's amused.
And I'd be like,

00:12:53.880 --> 00:12:57.600
they look angry to me.
And then he gets all of them right?

00:12:57.600 --> 00:12:59.680
And I get zero.
And I just go, oh, okay.

00:12:59.680 --> 00:13:04.640
Well, I don't know.
I obviously can't read any

00:13:04.640 --> 00:13:09.960
facial expressions on people.
So after a month of testing,

00:13:10.000 --> 00:13:13.640
Jess finally had a diagnosis.
And before Jess had the word

00:13:13.640 --> 00:13:17.440
autism to explain why she was
struggling so much as a new mum.

00:13:17.680 --> 00:13:21.440
She'd also seen the advice on social
media and had friends whisper in

00:13:21.440 --> 00:13:26.600
her ears about being a new parent,
but none of it was working.

00:13:27.200 --> 00:13:30.440
A lot of the advice, I guess,
that you're given as a parent when

00:13:30.440 --> 00:13:36.000
you're struggling was not working
for us, and I've now learnt was

00:13:36.000 --> 00:13:40.650
quite counter-intuitive, you know,
an example is if you have a colicky

00:13:40.650 --> 00:13:44.650
baby who's screaming and crying
nonstop, the advice is to lean into

00:13:44.650 --> 00:13:48.770
it and like, embrace the crying.
But if you're neurodivergent and you

00:13:48.770 --> 00:13:52.410
have auditory processing disorders,
being around a screaming kid for

00:13:52.410 --> 00:13:55.810
four hours is probably the worst
thing you can do, and you should

00:13:55.810 --> 00:13:58.650
do the opposite thing and remove
yourself from the situation,

00:13:58.650 --> 00:14:02.210
regulate, and then come back.
Having the diagnosis.

00:14:02.410 --> 00:14:07.730
Having the word that explains
why seemingly normal things are

00:14:07.890 --> 00:14:11.970
much harder for you.
That's just the beginning.

00:14:12.090 --> 00:14:15.570
Then that started, I guess,
the entirely new process for me,

00:14:17.050 --> 00:14:21.010
which at the time was, I guess,
fixing, right?

00:14:21.050 --> 00:14:26.050
I felt like I was a broken parent and
I needed help, and it was working

00:14:26.050 --> 00:14:31.930
with an OT to be around a loud crying
kid that's always touching you.

00:14:32.090 --> 00:14:34.290
Um, and building up a tolerance
for something like that.

00:14:34.290 --> 00:14:38.180
Until where I am now,
where I can very happily have a

00:14:38.180 --> 00:14:41.980
child cuff in my mouth,
or touch me with the stickiest

00:14:41.980 --> 00:14:47.940
fingers and not be reduced to tears.
Um, and be around a kid who's

00:14:47.940 --> 00:14:50.420
going through a meltdown and
then not be pushed into the same

00:14:50.420 --> 00:14:52.820
meltdown where we're both
sitting crying on the floor.

00:14:52.820 --> 00:14:55.860
Which was never helpful,
because when you're trying to

00:14:55.860 --> 00:14:59.820
regulate a child, you yourself can't
be in a worse state than them.

00:14:59.820 --> 00:15:03.700
And sometimes I was I was crying
harder than her and would I mean,

00:15:03.700 --> 00:15:08.420
it would get her to stop because
she'd be like, whoa, who's the one

00:15:08.460 --> 00:15:11.700
here? That's I thought I was upset.
What are you doing?

00:15:12.140 --> 00:15:19.220
Um, but, you know, now we do it
in a much more acceptable way.

00:15:19.740 --> 00:15:24.820
I think a lot of us would like
to believe that we, as society,

00:15:24.940 --> 00:15:30.180
have become better at accepting,
understanding and accommodating

00:15:30.180 --> 00:15:37.550
diagnoses of different or special or
divergent until it happens to you.

00:15:38.670 --> 00:15:44.590
I genuinely felt really disempowered,
and I had a bit of a grieving

00:15:44.590 --> 00:15:49.190
process,
and it's absolutely fine that

00:15:49.190 --> 00:15:52.430
other people don't feel that way.
The reason I felt that way is

00:15:52.430 --> 00:15:57.190
because to me, I was like, oh,
well, this is not fixable.

00:15:57.190 --> 00:16:01.150
So am I just going to struggle for
the rest of my life with filling

00:16:01.150 --> 00:16:08.230
out forms and like doing basic
tasks and struggling to live and

00:16:08.230 --> 00:16:10.830
struggling to be a parent and a
partner and a friend and all these

00:16:10.830 --> 00:16:16.990
things that were required to be, um,
I've obviously moved past that now,

00:16:16.990 --> 00:16:21.550
and I've realized, okay, it wasn't a
death sentence, but at the time it

00:16:21.550 --> 00:16:24.550
did feel a little bit like that.
It can be quite a devastating thing

00:16:24.590 --> 00:16:29.510
to go through because you go, oh,
the world isn't built for me,

00:16:29.510 --> 00:16:32.720
and there's nothing I can really
do about it anymore.

00:16:33.600 --> 00:16:37.560
So if we're honest,
the world is quite an uncomfortable

00:16:37.560 --> 00:16:42.520
place for many of us.
It's fast, it's loud, it's busy,

00:16:42.520 --> 00:16:46.920
it's bright, and sometimes it's
physically inaccessible.

00:16:47.280 --> 00:16:52.280
And sometimes we just know that
we aren't welcome.

00:16:53.120 --> 00:16:57.560
And the best we can do is get to
know ourselves well enough to

00:16:57.600 --> 00:17:02.640
learn how to create safety
within ourselves and around us.

00:17:03.560 --> 00:17:08.360
My interception is so awful,
I often don't realize what's coming

00:17:08.400 --> 00:17:11.800
until it's a little bit late.
I'm very grateful that Grant has

00:17:11.800 --> 00:17:15.040
picked up on a lot of triggers,
and he'll often say to me, like,

00:17:16.040 --> 00:17:18.480
I'm going to take Jamie for a walk.
You need to put your headphones

00:17:18.480 --> 00:17:20.880
on and, you know,
like he'll kind of gently guide me

00:17:20.880 --> 00:17:25.320
towards stopping whatever I'm doing.
And just he says to me,

00:17:25.320 --> 00:17:27.560
I can see it in your face,
and I don't know what that means.

00:17:27.600 --> 00:17:31.450
He'll sort of guide me towards all
of the coping mechanisms I have.

00:17:32.210 --> 00:17:37.050
Um, if I do feel it,
I can usually feel I'm a little

00:17:37.090 --> 00:17:41.210
bit more irritable than normal.
I'm quite everything feels sharp

00:17:41.210 --> 00:17:44.570
and loud and lights are hurting.
My eyes and sounds are hurting

00:17:44.570 --> 00:17:48.090
my ears. That normally wouldn't.
And that's when I go, okay,

00:17:48.090 --> 00:17:54.610
something's wrong and I maybe
need to not go out to a play

00:17:54.610 --> 00:17:57.410
park with you guys today.
Maybe you should go by yourselves,

00:17:57.410 --> 00:18:00.170
because if I'm around a whole bunch
of screaming kids, it's probably

00:18:00.170 --> 00:18:02.730
not going to be good for me.
Or I shouldn't go out today

00:18:02.730 --> 00:18:05.890
because even wind can set me off.
Like being in a windy place.

00:18:05.890 --> 00:18:08.690
The sensory thing of being
blasted with wind.

00:18:09.010 --> 00:18:14.890
Two minutes in, I'm in tears.
Um, so I can pick it up sometimes.

00:18:14.890 --> 00:18:20.170
But it's also been quite a reliance
on other people to pick it up for me.

00:18:21.330 --> 00:18:25.090
And maybe the hardest part of
receiving a diagnosis is when it

00:18:25.090 --> 00:18:31.310
comes with an additional label
like Disability of all the

00:18:31.310 --> 00:18:36.270
labels they handed us for Zoe,
disabled was the one that we

00:18:36.310 --> 00:18:41.630
couldn't quite comprehend.
A label that's meant to define a

00:18:41.630 --> 00:18:45.870
six month old life is not easy
to accept. And for Jess.

00:18:45.910 --> 00:18:49.790
Autism is a disability that she
lives with.

00:18:50.390 --> 00:18:55.750
I very much frame it in the sense
of disability because it does it,

00:18:56.030 --> 00:18:59.390
you know, disables me so much
and it's so debilitating.

00:18:59.510 --> 00:19:03.150
And I obviously have no problem
with other people framing it in a

00:19:03.150 --> 00:19:06.830
more positive way for themselves.
And if that helps their journey

00:19:06.830 --> 00:19:10.910
of acceptance and having this
part of themselves, which is such

00:19:10.910 --> 00:19:14.750
a big thing, be a bit easier.
That's absolutely fine.

00:19:14.750 --> 00:19:19.190
I have struggled with that.
And I'm also someone who's like

00:19:19.190 --> 00:19:22.350
quite a proponent, unlike the
language we use is so important,

00:19:22.350 --> 00:19:27.190
and something that is a disability
should be called that in order to

00:19:27.280 --> 00:19:31.880
acquire the help that we need.
Um, if everyone stops seeing

00:19:31.880 --> 00:19:35.800
something that is difficult and
a struggle as a disability,

00:19:35.800 --> 00:19:38.360
and they all start seeing it as a
superpower, with this little quirk,

00:19:38.360 --> 00:19:42.640
it becomes very difficult for people
who have higher support needs to

00:19:42.680 --> 00:19:45.720
access the help that they need.
So I'm obviously not on that end

00:19:45.720 --> 00:19:49.960
of of things.
I'm a mid to low support sort of

00:19:50.000 --> 00:19:57.640
autistic person, but I, I still
feel the advocacy for people on the

00:19:57.680 --> 00:20:02.880
higher support end where we can't
just change the language and make

00:20:02.920 --> 00:20:09.760
autism this manic pixie fun thing.
Um, when it is something that so many

00:20:09.760 --> 00:20:13.760
people struggle with and I mean,
there's adults who are never going to

00:20:13.800 --> 00:20:19.760
be able to have a job or not live
without a caretaker, and we can't

00:20:19.800 --> 00:20:24.840
really call it a superpower then.
So it's important that we frame

00:20:24.840 --> 00:20:30.210
autism Not as a superpower.
Nor as a death sentence.

00:20:30.410 --> 00:20:34.090
It's somewhere in between.
Which is why describing it like

00:20:34.090 --> 00:20:39.890
a spectrum makes so much sense.
It's the kind of brain difference

00:20:39.890 --> 00:20:45.850
that shows up in different ways and
needs different kinds of support.

00:20:46.530 --> 00:20:49.730
There are people that struggle to
get diagnosis, especially if you

00:20:49.730 --> 00:20:54.090
mask really well and you present
yourself as pretty neurotypical.

00:20:54.570 --> 00:20:57.610
But the neurodiversity center
that I went to,

00:20:57.610 --> 00:21:01.170
I think they're quite attuned to
the fact that a lot of people are

00:21:02.210 --> 00:21:05.810
late diagnosed and they've been
making accommodations for themselves.

00:21:05.810 --> 00:21:08.970
So they they ask the questions
and the standardized test in a

00:21:08.970 --> 00:21:12.170
different way.
So for an example,

00:21:13.170 --> 00:21:16.810
a question might be, do you have
sensory issues with clothing.

00:21:16.930 --> 00:21:21.690
And you might be quick to say, oh no.
Um, but it's because you've been

00:21:21.690 --> 00:21:24.170
accommodating yourself.
You only buy clothes off a

00:21:24.220 --> 00:21:26.500
certain fabric.
You wear your socks inside out

00:21:26.500 --> 00:21:30.340
so you don't feel seams.
You only buy a certain type of

00:21:30.340 --> 00:21:34.820
clothing that fits on you.
So instead of asking, do you have

00:21:34.820 --> 00:21:38.380
sensory issues with clothes,
they'll ask you, do you have one

00:21:38.420 --> 00:21:42.060
type of brand or clothing that
you always buy, or always?

00:21:42.100 --> 00:21:44.740
Where do you come home and
immediately change after you've

00:21:44.740 --> 00:21:47.620
been in your outside clothes?
In the world,

00:21:47.700 --> 00:21:50.460
do you always wear socks?
Do you never wear socks because

00:21:50.460 --> 00:21:53.580
you don't like the feeling?
So they ask the quite specific

00:21:53.780 --> 00:21:57.060
questions around accommodations
you might already be making,

00:21:57.700 --> 00:22:02.460
which for me made one the diagnosis
easier, but two it also made me

00:22:02.460 --> 00:22:06.060
realize the things that I've been
doing to this point that I didn't

00:22:06.060 --> 00:22:12.460
realize were autistic behaviors.
Um, so it also made it quite easy to

00:22:12.500 --> 00:22:16.820
then explain to people like family,
for example, who've been around

00:22:16.820 --> 00:22:20.780
you for 30 years now,
who suddenly go, since when?

00:22:20.900 --> 00:22:23.990
You've always just been like this.
You can go. Yes.

00:22:23.990 --> 00:22:29.150
Well, the reason I always wear socks
is because I don't like the sensory

00:22:29.150 --> 00:22:34.430
change of cold and hot or feeling
any textures, and that's just, um,

00:22:35.750 --> 00:22:39.030
that's just one of my sensory things.
And I know you've seen me do it

00:22:39.030 --> 00:22:42.310
since I was a kid,
but that's because I've had these

00:22:42.310 --> 00:22:45.750
sensory issues since I was a kid.
It's as simple as that.

00:22:46.590 --> 00:22:49.550
It's also important to
understand that autism isn't

00:22:49.550 --> 00:22:54.790
just a medical diagnosis.
Now it is increasingly wrapped up in

00:22:54.790 --> 00:23:00.190
debates about funding, education,
identity, and who gets to tell the

00:23:00.190 --> 00:23:05.510
story of what autism really is.
So while the increased awareness

00:23:05.510 --> 00:23:10.670
and open conversations on social
media are useful, this isn't a

00:23:10.670 --> 00:23:14.230
conversation that should be guided by
influencer hot takes or politicians

00:23:14.230 --> 00:23:22.690
with small, orange tinted hands.
It is nuanced. It is personal.

00:23:23.370 --> 00:23:26.770
People should be able to
self-diagnose or do this thing

00:23:26.770 --> 00:23:30.050
that I call being peer reviewed,
which is when a lot of your friends

00:23:30.090 --> 00:23:37.250
go. There something about you.
And we all agree.

00:23:37.730 --> 00:23:41.930
Um, and I think whether you have
a formal diagnosis or not,

00:23:41.930 --> 00:23:44.810
you should be able to make
accommodations and do these things in

00:23:44.810 --> 00:23:48.850
your life and go to a therapist or
an OT and get the help you need.

00:23:48.890 --> 00:23:53.010
I think the unfortunate thing is
that a lot of people sometimes will

00:23:53.010 --> 00:23:56.170
only make accommodations for you.
If there's a piece of paper that says

00:23:56.170 --> 00:24:02.090
that, you know, you can't always
go into work and say, for example,

00:24:02.090 --> 00:24:05.450
I can only work a certain amount
of hours, but if you have a

00:24:05.450 --> 00:24:09.570
piece of paper that says that,
then they'll make that accommodation.

00:24:09.570 --> 00:24:13.610
Or sometimes, you know, you can go
to family and say, I have autism.

00:24:13.610 --> 00:24:16.490
And they'll go, no, you don't.
Even if you present all of the

00:24:16.490 --> 00:24:19.580
information until a professional
hands a piece of paper and Is.

00:24:19.580 --> 00:24:22.700
There you go.
Um, although in my case, even that

00:24:22.700 --> 00:24:29.060
didn't convince a lot of people.
But it certainly does help sort

00:24:29.060 --> 00:24:31.900
of justify why you need
accommodations to people.

00:24:31.940 --> 00:24:35.140
Because sometimes simply asking
isn't enough.

00:24:35.140 --> 00:24:39.380
And, you know, even with certain
therapies and and OT and stuff,

00:24:39.420 --> 00:24:42.660
medical aid only covers it.
If you've got the piece of paper

00:24:42.660 --> 00:24:45.460
and it just becomes an
incredibly expensive process.

00:24:45.460 --> 00:24:48.940
And even getting that piece of
paper is thousands of rands and

00:24:48.940 --> 00:24:51.420
is something that's not
available to everyone.

00:24:52.300 --> 00:24:57.260
So yes, getting a formal diagnosis
was great in terms of actually

00:24:57.260 --> 00:25:01.180
getting accommodations I needed
from the people around me, um,

00:25:01.180 --> 00:25:06.580
who might have not done it otherwise.
As Jess shares some of her

00:25:06.580 --> 00:25:13.060
experiences. I find myself relating.
I am well aware that many of my

00:25:13.060 --> 00:25:16.860
own sensory processing issues have
become progressively more noticeable

00:25:16.860 --> 00:25:23.230
and sometimes debilitating.
So in the years post hospital trauma

00:25:23.230 --> 00:25:30.070
with Zoe, and as I nod along in
this conversation, I do wonder.

00:25:31.030 --> 00:25:35.350
There is the anti self diagnosis
police.

00:25:35.350 --> 00:25:39.830
I don't know what the unofficial
commission of autism diagnosis,

00:25:39.870 --> 00:25:43.510
where you're not allowed to not have
a formal diagnosis and then call

00:25:43.510 --> 00:25:46.510
yourself autistic, or they think that
they're better themselves because

00:25:46.510 --> 00:25:51.110
they they have this piece of paper.
I personally don't feel that way,

00:25:51.110 --> 00:25:55.870
and I wish everyone else didn't.
And I don't feel like someone else

00:25:55.870 --> 00:26:00.830
has experience and validates my own.
But there's nothing I can do to

00:26:00.830 --> 00:26:04.950
influence other people.
Jess has tried to be open and honest

00:26:04.950 --> 00:26:09.950
about her journey, and take people in
her life along for the ride, and

00:26:09.950 --> 00:26:13.510
hopefully to make the world a little
bit gentler for others going through

00:26:13.510 --> 00:26:18.280
the same or similar experiences.
I think I have been surprised by

00:26:18.280 --> 00:26:20.840
some of the people that haven't
understood.

00:26:20.920 --> 00:26:25.360
Um, I think most people that go
through a diagnosis,

00:26:25.400 --> 00:26:28.600
you end up losing some friends and
you end up losing some family.

00:26:28.640 --> 00:26:33.560
And I mean, that's been difficult,
but I think you sort of trade those

00:26:33.560 --> 00:26:37.720
people for the community that you
find in there as a community in this.

00:26:37.720 --> 00:26:42.120
And, um, it's even the strangest
thing when I go out now or I go to

00:26:42.160 --> 00:26:47.960
events or, you know, all of these
third spaces that I go to now,

00:26:47.960 --> 00:26:53.480
and you meet someone who you go,
hmm. Are we the same?

00:26:53.520 --> 00:26:57.680
I think so, and you sort of
immediately get on with that person.

00:26:57.680 --> 00:27:01.000
And, um,
you can now sort of understand why

00:27:01.000 --> 00:27:05.200
you get along with them really well.
And there is quite a lot of

00:27:05.200 --> 00:27:07.000
acceptance here.
And once, you know,

00:27:07.000 --> 00:27:11.480
there's part of yourself, I mean,
any autistic person will tell you

00:27:11.520 --> 00:27:14.280
they meet another autistic person.
It's immediately like, oh,

00:27:14.290 --> 00:27:15.730
thank goodness.
Because okay,

00:27:15.730 --> 00:27:20.130
we can be ourselves with each other
now and we can cut right to it.

00:27:20.130 --> 00:27:24.370
And there's there's no oh,
we need to do small talk and we

00:27:24.370 --> 00:27:27.290
need to do all of these things.
We can kind of just be ourselves.

00:27:27.290 --> 00:27:35.370
And that's been quite nice. Hmm.
It is quite nice to feel understood,

00:27:35.610 --> 00:27:42.850
to feel seen, to be included in our
experience as a family of three.

00:27:43.050 --> 00:27:49.170
Navigating Zoe's very obvious needs,
like mobility, is a little bit easier

00:27:49.170 --> 00:27:53.570
because most people will help.
They'll move something out of

00:27:53.570 --> 00:28:00.250
the way for us, for example,
and most people won't park in a

00:28:00.250 --> 00:28:04.250
disabled parking spot.
But it is much,

00:28:04.250 --> 00:28:08.170
much harder to communicate the
other support that she needs.

00:28:08.330 --> 00:28:12.250
And to be honest,
the support that we need to.

00:28:12.750 --> 00:28:18.670
I think another thing that is
also quite interesting is I live

00:28:18.670 --> 00:28:23.670
with someone who has ADHD.
That's someone is Grant.

00:28:23.870 --> 00:28:27.390
We need the complete opposite things,
which has also been quite

00:28:27.670 --> 00:28:34.030
challenging to navigate.
Um, I, I really like structure

00:28:34.030 --> 00:28:38.590
and routine and things need to
be done a certain way.

00:28:38.590 --> 00:28:41.790
And when you have a kid,
that also really helps, because kids

00:28:41.790 --> 00:28:45.670
also like structure and routine and
planning and things that are stable.

00:28:46.190 --> 00:28:52.350
Whereas my husband likes novelty
and spontaneity and things to be

00:28:52.550 --> 00:28:55.990
a little bit more novel.
And so that's been a bit of a

00:28:55.990 --> 00:28:58.110
challenge for him.
And throughout this process,

00:28:58.110 --> 00:29:00.790
he's probably got the shortest end
of the stick because he's had to

00:29:00.790 --> 00:29:04.710
make the most accommodations that go
against sort of things that he needs.

00:29:05.150 --> 00:29:10.630
Um, he might like a lot of sensory
input and loud music and and blasting

00:29:10.680 --> 00:29:14.960
songs at home, and then both myself
and my daughter go, why is there

00:29:15.000 --> 00:29:18.840
so many sounds in the house?
And then he suddenly has to reel

00:29:18.840 --> 00:29:22.720
it in.
So bless him, um,

00:29:23.040 --> 00:29:27.680
for making the most accommodations
out of anyone in this process.

00:29:27.960 --> 00:29:31.240
Grant has stepped up in all the
ways that he knows how.

00:29:31.560 --> 00:29:35.000
But what I didn't know is that
he likes to make sure that Jess

00:29:35.000 --> 00:29:38.440
and Jamie are fed properly in
the mornings.

00:29:38.960 --> 00:29:43.120
Yeah, my my breakfast or choice is
something I don't make myself, and

00:29:43.120 --> 00:29:46.880
I'm very grateful that I'm married to
someone who every morning brings

00:29:46.880 --> 00:29:53.400
me breakfast in bed with a coffee.
And because I'm not the morning

00:29:53.400 --> 00:29:56.920
person in the house and neither
is our daughter, and often her

00:29:56.920 --> 00:30:00.520
and I will be cuddled in bed,
half asleep, grumpy.

00:30:00.520 --> 00:30:04.360
And then, thankfully,
Grant is a bit perky and he comes

00:30:04.360 --> 00:30:09.080
and sort of wakes us up as slowly
as possible, like deers in a

00:30:09.090 --> 00:30:14.650
forest just gently waking us up.
Sorry. Did I not tell you?

00:30:14.690 --> 00:30:19.850
Grant is one of the best people
I know. And Jess agrees.

00:30:20.010 --> 00:30:24.970
I've made a lot of bad decisions in
my life and a lot of things I regret.

00:30:24.970 --> 00:30:31.050
But who I married is not one of them.
I am so thankful and grateful, and

00:30:31.090 --> 00:30:36.650
especially having a kid, I could not
have picked a better person and I.

00:30:37.530 --> 00:30:40.930
I mean, we often see, especially
with social media these days,

00:30:41.050 --> 00:30:44.090
a little window into how other
people are sort of coping with with

00:30:44.090 --> 00:30:49.890
partners and kids and they're not.
And, um, I'm just really grateful

00:30:49.890 --> 00:30:54.410
that I'm, I'm with someone who not
only has just been a great dad,

00:30:54.410 --> 00:31:00.090
he's been a great partner in any
normal situation, but especially

00:31:00.370 --> 00:31:04.530
with going through something that is
such a life change on both of us,

00:31:04.530 --> 00:31:06.890
and it impacted both of us.
It really did.

00:31:06.930 --> 00:31:11.420
Um, your partner getting any
sort of diagnosis? Health wise?

00:31:11.420 --> 00:31:14.820
Mental health wise?
Um, disability wise,

00:31:14.820 --> 00:31:19.140
it's it's it affects everyone.
And especially the person that

00:31:19.140 --> 00:31:21.180
you live with that you're around
the most.

00:31:22.020 --> 00:31:27.540
Jess is feeling much better
about who she is and how she is.

00:31:27.940 --> 00:31:30.380
Motherhood is no longer the
thing that breaks home,

00:31:30.380 --> 00:31:35.740
but the thing that brings her joy,
even though it is hard at times.

00:31:35.740 --> 00:31:40.620
But now the trio are starting to
live the life that they want for

00:31:40.620 --> 00:31:44.860
their futures.
Because the situation for us

00:31:44.860 --> 00:31:49.980
personally was so dire and so it
needed so much correction, we might

00:31:50.020 --> 00:31:54.220
have overcorrected to the point
where every single accommodation

00:31:54.220 --> 00:31:56.780
and thing that we've changed has
been for me, and then Grant's

00:31:56.820 --> 00:32:01.420
sort of waiting in the sidelines,
going, okay, at some point are

00:32:01.420 --> 00:32:05.260
we going to take care of me too?
Um, so I think we're we're slowly

00:32:05.260 --> 00:32:09.670
trying to steer the ship back to the
the middle ground, where now there's

00:32:09.670 --> 00:32:13.870
more of a partnership happening.
And I think I've tried to do things

00:32:13.870 --> 00:32:16.470
where I've said, you need to go
out with your friends and do novel

00:32:16.470 --> 00:32:20.390
things and just go have some fun.
And I mean, previously we couldn't do

00:32:20.390 --> 00:32:24.070
that because I was too scared to be
left alone with our child because I

00:32:24.070 --> 00:32:26.990
thought, what if I have a meltdown?
And what if she starts crying?

00:32:27.110 --> 00:32:29.430
Whereas now I'm obviously in a place
where he could go away for two

00:32:29.430 --> 00:32:32.230
weeks and I'd be like, I'm going
to be tired when you get back,

00:32:32.230 --> 00:32:36.350
so don't go longer than two weeks.
But I mean, you can go and do things.

00:32:36.350 --> 00:32:40.510
So I think we're also now
getting back into the the rhythm

00:32:40.510 --> 00:32:46.430
of things where there's.
Sort of solving the needs.

00:32:46.430 --> 00:32:51.030
And once of two people again.
Hosting Jess, Jamie and Grant at

00:32:51.030 --> 00:32:55.430
our house for a bry was so easy.
And to be honest,

00:32:55.430 --> 00:32:58.990
it isn't always easy for the
three of us in the Lewis clan to

00:32:59.030 --> 00:33:04.530
just hang out with other people.
But the Haynes's have embraced

00:33:04.530 --> 00:33:09.250
our different from the start.
They've watched us lose ourselves

00:33:09.250 --> 00:33:15.210
in the trauma and rebuild a life
that is different but beautiful.

00:33:16.610 --> 00:33:20.530
And there's maybe even things
that my husband really loved

00:33:20.530 --> 00:33:27.170
about me that are gone now.
Um, because it just wasn't who I

00:33:27.170 --> 00:33:31.690
wasn't as maybe who I was sort
of pretending to be or fawning.

00:33:31.730 --> 00:33:38.570
It's a huge ask when your
partner has any sort of major

00:33:38.570 --> 00:33:42.810
life change come upon them.
Um, and they have to change so

00:33:42.810 --> 00:33:46.250
many things about themselves.
And there was that.

00:33:46.250 --> 00:33:48.690
I mean, the person that I was
before diagnosis.

00:33:48.690 --> 00:33:56.210
She's really not around anymore.
These days, Jess is thriving in her

00:33:56.210 --> 00:34:02.210
new normal and finds much joy in
being a mom, a wife and a partner.

00:34:02.740 --> 00:34:06.100
We may lose many things during life.
Quakes.

00:34:06.300 --> 00:34:11.100
Things that are precious to us get
stripped away in seismic events.

00:34:12.220 --> 00:34:17.540
But perhaps the small joy is
that we can lose our masks too.

00:34:21.180 --> 00:34:24.700
If Something Shifted,
has moved you, made you feel seen,

00:34:24.700 --> 00:34:28.100
or simply kept you company.
The best way to say thank you is

00:34:28.100 --> 00:34:31.380
to leave us a five star rating
on your listening platform.

00:34:31.420 --> 00:34:35.140
It takes five seconds and
honestly means the world.

00:34:35.740 --> 00:34:39.380
Subscribe so you never miss a
human centered story and check out

00:34:39.380 --> 00:34:42.300
the show notes for the Something
Shifted Soundtrack playlist,

00:34:42.420 --> 00:34:45.820
a compilation of songs we've listened
to while making this season,

00:34:45.820 --> 00:34:50.380
songs that make us feel a little less
lonely and a lot more empowered.

00:34:50.940 --> 00:34:53.660
Many thanks to Rue
my executive producer, for

00:34:53.660 --> 00:34:56.540
additional writing on this episode.
And as always,

00:34:56.620 --> 00:34:59.740
thank you for listening bye.