March 31, 2025 • 30 mins
In this episode, host Leisa Reichelt interviews Emma Gilmour, mum to two neurodivergent teens. Emma shares her experience supporting her younger daughter through her journey through discovering her neurodivergence, her School Can’t experience and autistic burnout, and how connecting with passion while reducing demands has helped her daughter to find her way back.
Content warning: includes discussion of self harm and suicidal thoughts, though not discussed in detail. Take care when listening and please reach out for support if you need it.
Emma’s recommended resources:
- Kristy Forbes - In Tune with PDA - https://www.kristyforbes.com.au/pda
- Eliza Fricker’s books - https://missingthemark.co.uk
- Dr Naomi Fisher (books, webinars, courses) - https://naomifisher.co.uk/
- Viv Dawes - Autistic Burnout resources - https://www.autisticadvocate.co.uk/autistic-burnout
- School Can’t Australia Facebook Community - https://www.facebook.com/groups/schoolphobiaschoolrefusalaustralia
- Make a donation to School Can’t Australia - https://www.schoolcantaustralia.com.au/get-involved
If you are a parent of carer in Australia and experiencing distress, please call Lifeline on 13 11 14 or contact the Parent Help Line. - https://kidshelpline.com.au/parents/issues/how-parentline-can-help-you
You can contact us to volunteer to share your School Can't story or some feedback via email on schoolcantpodcast@gmail.com
Disclaimer
The content of this podcast is based on personal lived experiences and is shared for informational and storytelling purposes only. It should not be treated as medical, psychological, or professional advice under any circumstances. If you have concerns about your health or well-being, please seek guidance from a doctor, therapist, or other qualified professional.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Leisa Reichelt (00:05):
Hello and welcome to the School Can't
Experience podcast.
I'm Leisa Reichelt, and thispodcast is brought to you by the
School Can't Australiacommunity.
Caring for a young person who isstruggling to attend school can
be a stressful and isolatingexperience, but you are not
alone.
Thousands of parents acrossAustralia and many more around
the world face similarchallenges and experiences every
(00:26):
day.
Today we have another of ourLived Experience episodes and we
are going to meet Emma Gilmour.
Emma is mum to twoneurodivergent young people who
have each had very individualSchool Can't experiences that
have required very differentkinds of support from Emma.
In this episode, we're going tofocus on Emma's experience
(00:47):
supporting her younger daughter,Ushi through her School Can't
journey.
Before we start, just a quickcontent warning.
In this episode, we do mentionself-harm and suicidal thoughts,
though we don't discuss them inany detail.
Please take care while listeningand do reach out for support if
you need it.
Alright, Emma, I would love foryou to get us started by just
telling us a little bit aboutyou and your family and any
(01:09):
context that you think might behelpful.
Emma (01:10):
Yeah.
So, we are a family of latediagnosed autistic, ADHD human
beings, with the exception of myhusband, who is undiagnosed but
identifies as ADHD/Autistic.
We came over from England in2011 and we both worked in
corporate world, I worked incorporate marketing and he
(01:33):
worked in IT.
And we brought our babies overfrom the UK, 10 months old, my
youngest was, and my oldest wastwo and a half.
We had no idea that we wereneurodivergent.
My littlie, who we're going tofocus on mainly for this
discussion.
She was an interesting, baby inthat she kind of didn't obey any
(01:55):
of the rules of babying.
When she was born, she was stuckto me and she didn't sleep.
I mean, this is normal stories,isn't it?
I also didn't sleep as a child.
I mean, these are all the thingsthat are like your tingle bells,
aren't they?
And I remember she wasbreastfed.
She wouldn't stop breastfeeding.
I was like, no, no, we are onlydoing this for six weeks.
(02:15):
She was like, oh, no, we arenot.
I remember when she was verylittle, I had to carry her in a
sling all the time, like awraparound sling And she was
constantly breastfeeding.
So like breastfeeding wasstimming.
Like, she was literallycomforting herself by sucking my
boob.
It was just my normal, I justhad the baby on my boob the
whole time.
And I remember as well when shewas developmentally like she
(02:37):
tiptoed for ages when she firstwalked, and nobody said
anything.
And we went to sleep school andI was like, what's wrong with
me?
What's wrong with my children?
Why does all this stuff thatworks for everybody else not
work for us?
And you know, it's heartbreakinglooking back on it now because I
believed the people knew whatthey were doing, who I was
(02:59):
listening to and going to foradvice So my youngest child is
now being diagnosed with PDAautistic.
She also has chronic fatigue.
For her, everything is a safetything.
She goes through her world onhigh alert She was a hugely high
masker.
Everyone's like, oh, they'reperfect.
(03:19):
What are you talking about?
And they'd moan about my otherkid and I'd be like, what do you
mean?
He's fantastic at home becausehe's more of a fawner, more
compliant, whereas, my youngerone at home, she'd come home and
the wheels would fall offthinking back on it.
And again, I had no frame ofreference, so these were just
the things we used to do.
they were our normal, I knew mykids couldn't sleep, so that was
(03:41):
a really big issue for us.
So, and of course there's allthis, you know, kids shouldn't
sleep in your room with you, allthat nonsense and, and
eventually you're so tired,you've got no...
you just have to do what feelslike the right thing to do.
Even now, at 16 and 14, I haveboth my kids in bed with me
every night because it meansthey can go to sleep.
You do what you have to do toget you through.
Leisa Reichelt (04:04):
I think that's actually much, much more common
than what people would think,isn't it?
Emma (04:09):
And people are so judgy,
Leisa Reichelt (04:10):
Yeah.
Emma (04:10):
But I look at back my childhood and I think, God, I
would've loved to.
I used to walk around the roomsin my house, try and see if
somebody would let me in theirbedroom, and no one would,
Leisa Reichelt (04:18):
Let's go back then.
What are we going to call youryoungest?
Emma (04:23):
Her nickname at home is Ush
Leisa Reichelt (04:26):
That's very cute.
Let's call her Ushi.
Okay, let's go back in time toUshi's earliest experiences of
formal education.
Talk us through what thatjourney was like.
'cause you were still workingfull-time?
Emma (04:41):
Yeah, so I was, you know, my upbringing was that I was
going to go into a career.
I was going to be able to havekids.
I was going to have, the moon ona stick.
It was only really when I hadchildren, I think it all started
to crumble a bit because allthose masking things that I put
into place as a single person oras a person in a partnership
fell apart.
Which I think is very common,isn't it?
But I know when, she went todaycare first.
(05:05):
Daycare was okay.
They were very caring in there.
She went to a community daycare.
It was very scruffy and lovely,not at all what I would've
wanted.
I imagine at the time I would'vebeen like, oh no.
but that's what we could getinto.
And they were actually veryloving and very nice.
Even school they were actuallycompletely fine with going to
school and everything seemednormal.
There was odd little things butgenerally Ush flew under the
(05:27):
radar.
Very, very high masking.
We felt like a normal family,except for everything was really
hard, like getting people out ofthe house.
We had to go through theserituals of, know, like shower
had to happen in a certain wayand things had to happen in
certain orders for us to moveforward.
Otherwise we had to go back tothe beginning and I'd just be
like, why can't we do this?
(05:49):
What is wrong with me?
Why am I such a bad parent?
Why could everybody else makethis look so easy?
And I can't get mine to schoolwithout, I mean, we get there,
but it would just be a lot ofstuff to get there.
And I remember trying to, getthe train and get into work for
half past eight in the morningand just being like, I'd get
into work and I'd just belike.....
Leisa Reichelt (06:08):
You've already done a day's work, really
haven't you?
Emma (06:10):
And I know everyone feels like that, but it just felt
incredibly intense.
Primary school for them waspretty good.
They had, they seemed to havefriends.
Ushi changed friends she changedfriends regularly, so she'd be,
they'd tell me that she was apopular kid.
So again, this is part of thishigh masking, like appearing to
be like everybody else.
(06:30):
Conforming.
And very high perfectionismtendencies and very good at like
reading what other kids aredoing and what they look like
and how to be like them.
But she used to swap friends.
She had one really good friendall the way from Kinder that
they were like best friendsuntil quite recently.
But other than that, she'd justchanged friends with her years.
(06:52):
And then COVID happened and thatfor us was the sort of beginning
of the end, I suppose.
Particularly in Ushi's case.
The COVID itself actually forour family was a massive relief
and we were all just absolutelystunned by how much happier and
less stressed we were again,signals.
Um, But, the big problem for ushappened, and this is something
(07:16):
that I know it's, it's verycommon, but it's also something
I find unusual in our SchoolCan't community I don't often
hear of so many kids for whomDistance Ed or Home Ed isn't an
option.
For us, one of the biggesttraumas of COVID, particularly
for my youngest, Ushi.
(07:36):
Was that school came home intosafe place.
And so home had been safe.
School had been high maskingwhere we could be what we were
supposed to be.
It had its toll on us.
But when we got home, we closedthe door.
Mom was a safe place.
We were safe.
And then all of a sudden, mumwas a teacher and classroom was
(07:59):
in my room,in my house
Leisa Reichelt (08:02):
Wow.
Emma (08:04):
And then that was, that was kind of it.
And it took a long time for thewheels to fall off.
We kind of of gave up on theteacher and homeschooling pretty
early on.
I think what then happened is Imean, there's so many different
things that could be involved init, like hormones and age as
well.
But when we had to go back toschool in real life, that was
(08:28):
when stuff started to get reallydifficult.
Leisa Reichelt (08:32):
So what year was Ushi in during COVID?
Emma (08:35):
She would've been in grade five, I think.
Leisa Reichelt (08:38):
So like late, late primary.
Emma (08:40):
It's all a bit of a blur to me.
Leisa Reichelt (08:43):
Oh yeah, I hear you.
Same.
Emma (08:45):
Things started to go really badly wrong with her
mental health.
Because she was getting more andmore isolated, we'd given her a
mobile phone and we hadn't putthe right security guards on it.
We had security on everythingelse, but we'd given her this
one thing and we were just like,we'd give it to her early before
high school because she's notgot seeing any friends.
She started to get reallyisolated.
I'm not one to chastise onlineat all because I actually think
(09:06):
it has a lot of benefits but inthis particular circumstances I
was really concerned'cause she,she'd started to self-harm and I
was scared.
I was worried about the peopleshe was talking to because I
also know that these type ofthings can be influenced by
people.
And I know for myself, and youknow, very commonly as well, I,
had eating disorders as ayounger person and it was
(09:27):
definitely a team sport in acertain extent in my school.
So I, there was all these thingsgoing on and I decided that I
was going to have to put theboundary in of, taking the phone
away, really putting all thesecurity safety things and it,
it, it really broke her, thatbetrayal of trust and that
boundary and that, um, whateverhappened there, broke her for a
(09:54):
bit.
She no longer was talking to me,and she, um, she must have been
so alone.
Poor baby.
Because she lost me.
And the people that she wasconnecting with online, whether
or not they were the rightpeople they were a connection
and suddenly it was all gone.
Leisa Reichelt (10:14):
Yeah.
Emma (10:14):
And so things got really serious and she was having
suicidal thoughts and I wasreally scared and I didn't know
what to do.
It's one of these like, how hasthis happened to us?
How did we get here?
I don't know how we got there.
You know, that's sort of likeincredulous.
And, and that desire that wehave, don't we as parents?
I must be able to fix this.
(10:34):
Where's the book?
Leisa Reichelt (10:35):
I've gotta find the thing and then it'll all be
okay.
Emma (10:38):
right?
And the worst thing about itfor, Ushi is, I think the
biggest piece was the riftbetween us.
And that was reallyheartbreaking, I think, for both
of us, and really left herreally isolated.
But the worst thing about it, Ithink, was that all the
professionals that we were goingto, in retrospect, were giving
us really bad information.
Leisa Reichelt (10:58):
Talk a little bit about that.
Emma (10:59):
So basically the first place we went was Royal
Children's, and I was reallyscared.
I thought, I've got no otheroption.
I remember thinking to myself, Iknow you're frightened, but
we've still got to do this.
it was almost that comfortingmyself in my fear, and we've
still got to do this.
That was very helpful.
And then we met the people atthe Royal Children's, and that
was fine.
In the emergency piece.
It was kind of fine, but then wegot referred to their counselor.
(11:21):
We were trying so hard to getsomebody to see us.
We got referred there and therewas just some really unhelpful
things happened.
There's a lot of parent blamingand there was a lot of not
believing our experience andeven our pediatrician who we
ended up getting referred to,who was absolutely brilliant,
very old school, and thank Godwe had her because she at least
got us diagnosed with ADHD andreferred us to get diagnosed
(11:43):
with autism.
But at the time, it was eitherthat we weren't doing something
right at home, or that she wasbeing naughty.
Leisa Reichelt (11:52):
So that kind of real behaviorist viewpoint.
Emma (11:55):
Yeah.
And
Leisa Reichelt (11:55):
my gut
Emma (11:56):
was telling me this is not,
Leisa Reichelt (11:58):
Because by this stage probably you've tried so
many different things.
Emma (12:02):
absolutely.
Well, we did all the rewardcharts and all that nonsense.
And none of it worked.
And what we were doing wasdamaging our relationship with
our kids.
We are feeling awful aboutourselves.
So it's like, no, we're notdoing this anymore.
So again, you have to do thesethings that people tell you to
do and you're trying and you'retrying and, and even like far
down the line as we are now, youstill get that little am I
really doing this right or am I.
Leisa Reichelt (12:23):
Mm-hmm.
Mm-hmm.
Yeah.
Every day.
Emma (12:26):
She really started to deteriorate in 22 to the point
where she became bedbound.
So everyone's like, oh, she'sdepressed.
And they were trying to youknow, tell us oh, you need to
get her out and you need to gether to do more.
Um, and you believe people'causeyou think, well these are the
professionals.
They know what they're doing.
I mean, this is people in placesthat call themselves neuro
affirming, diagnosing PDA kids.
(12:47):
What we now know is autisticburnout, chronic fatigue, and
saying that they need to pushthrough, do more, get out and
get some exercise and some freshair.
We went to high school like Ushiwas really full of hope.
Like, I'm going to go to highschool, it's going to be a
different environment, it'sgoing to be great.
And so we get there and we getall the uniform, we're all ready
to go.
She gets there and the firstweek's, okay.
And then as it deteriorates,deteriorates, deteriorates
Leisa Reichelt (13:09):
Yeah.
Emma (13:09):
going and she's back in bed.
And then we are seeing people atthe Royal Children's.
We're seeing OTs, we're seeingall sorts of people.
And we get referred to thisplace has been very helpful for
a lot of autistic kids, ingetting them back to school.
But my understanding is thatit's a university funded project
and it's a research project.
And the research project, theparadigm that it's trying to
(13:31):
prove is that, if you do certainthings, attendance will
increase.
And the problem that we havewhen we have a PDA autistic kid
who is in burnout, Is that yes,anxiety's involved in it, but
physically, someday she couldn'tlift her head off the pillow
because she'd go one day andthen have to recover.
(13:51):
She really wanted to do well.
But it actually set us backbecause what
Leisa Reichelt (13:55):
Yeah.
Emma (13:56):
the end as, as it was a six week program.
I was 13 week program, I can'tremember, but we couldn't make
it through each week we got lessand there was this, we'd get
calls, you know, if you don'tcomplete the program, it's not
going to work.
You know, if you don't attend,it's not going to work.
Making us the problem, if it wasa trying issue.
I'm like, this is where we are.
(14:17):
She's not sat at home likedancing around she's bedridden.,
and they just couldn't.
And I was giving them all thesebooks by Eliza Flicker and they
were lapping them up.
They were like, this is sointeresting.
And I'm thinking, am I the firstperson to be here with this?
Maybe I was, I don't know.
But, it seems strange.
The people were good, but theywere working on the wrong
paradigm.
The paradigm that they'reworking under is different to
(14:39):
the paradigm that our childrenare living.
Leisa Reichelt (14:42):
This is it though, isn't it?
I think the parents who havedealt with this for a long
period of time have done so muchinvestigation.
In a lot of cases it feels asthough we know so much more than
the professionals that we haveto interact with.
Emma (14:53):
Yeah.
And then they, Unfortunately,don't mean to, but they do harm.
Leisa Reichelt (14:58):
yeah, they do.
Emma (14:58):
And this is what I keep saying to Ushi's secondary
school at the moment, andthey're really trying, but they
keep saying, well, let us speakto Ushi I'm like, no, I'm not
going to let you speak to Ushinot until I
Leisa Reichelt (15:07):
Yeah.
Emma (15:08):
that what you are going to say to her is not going to cause
her harm.
Because you coming in andpushing attendance when she has
chronic fatigue and can't getout of bed, that's going to
cause her harm because she'sgoing to think, they think I'm
bad'cause I can't do this.
Leisa Reichelt (15:23):
Yeah.
So let's talk about Ushi and herprogress through this kind of
chronic fatigue, burnout sort ofphase.
At what point did she get herautism diagnosis?
Emma (15:34):
22, July 22, which kind of around when we went into
burnout, it was
Leisa Reichelt (15:39):
Yeah.
Emma (15:40):
in and out of burnout for a bit, what would happen is
you'd come into the bedroom andyou'd say something to her and
she'd goes, stop shouting at me.
And you could see like all hersenses were completely,
everything was unsafe.
Including us.
The world was unsafe for her.
Leisa Reichelt (15:57):
And did she get a burnout diagnosis?
Emma (15:59):
I had to work really hard to get a diagnosis and I had to
make lots of complaints I wasvery lucky that I managed to get
a pediatrician eventually whowas willing to put it, because
they're so scared to put thesethings because these things
aren't in the DSM, like PDA, Istill think half the
psychiatrists working inneurodiverse don't actually
(16:20):
believe in autistic burnout.
Chronic fatigue everyone canunderstand and that's why we got
the chronic fatigue diagnosis.
Everything got easier for uswhen we got the chronic fatigue
diagnosis, school doctors,allied health professionals,
everybody just backed off a bit.
Leisa Reichelt (16:36):
Okay, so Ushi was kind of in bed sleeping a
lot.
Emma (16:39):
And
Leisa Reichelt (16:40):
Very, very kind of sensory overload.
Emma (16:44):
sensory overload and her passions were she used to be a
big dancer.
She loved dancing, she lovedgymnastics, she loved
performing.
She just got really passionateabout ice skating and
gymnastics, which was her thing.
What I learned from listening topeople like Viv Dawes and Eliza
Fricker, was that look, followtheir passion, low demand, and
follow the passion and let thepassion lead.
And what Viv talks about a lotin her work and her, her books
(17:07):
have been really helpful to me,was this idea of, you know,
letting that passion lead andwhat that's led us to- and it's
been absolutely the rightstrategy, and even when I
convince myself sometimes thatit's not.
You know, she is managing to doso much.
Like last year she was doing,team aerobics, which she really
liked at school.
(17:28):
That was the thing she managedto do.
And she picked back upgymnastics.
So she did gymnastics on aFriday and one hour of team
aerobics.
It was in school, so she waspart of the school, she was part
of the team, it's just likekeeping them engaged with like
the friendship side of things,but not, have to do the other
stuff.
This year she started iceskating, and she started
(17:49):
studying Russian because sheloves ice skating.
So she's going to VictorianLanguages, School on Saturday
morning to study Russian fromnine til 12.20, which to me is
an incredibly long time, but shecomes out of it absolutely
buzzing'cause relational safety.
The teachers are really nice.
She's passionate about thesubject.That relational safety
gives her energy, whereas notfeeling relationally safe to
(18:12):
teachers.
You can see like literally ifshe submits a piece of work at
school and the teacher doesn'tcome back to her or doesn't mark
or doesn't say anything, she'llgo and be checking.
She'll be checking on her Googleclassrooms and you can see her
slowly deflate.
And so again, it's thisrelational safety.
It's being valued, being seen asgood, people caring about you,
you know, you matter.
(18:33):
What I've been working with thehigh school with mainly is like
trying to build relationalsafety and trying to educate
them in the things that we needin order for her to be okay at
school.
Like, knowing what's going tohappen beforehand.
If you're going to change rooms,let us know.
At the moment we're doing dance,which is lovely.
Leisa Reichelt (18:50):
Yeah.
Emma (18:51):
subject of dance, she's doing her aerobics still.
And then she's also doingEnglish, but English at home.
So we've got some support froman advocate person who's been
helping us with that sort of,just'cause she's missed so much.
So things are looking up.
Ushi's really happy, she admitsshe's really lonely, she's
missing friends.
She wants to make friends andI'm sure she will'cause she's a
(19:12):
beautiful human.
But the whole experience kind ofis not conducive for teenage
relationships to keep going.
You know, having two years whereyou're bedbound, is not, um.
You know, teenagers don't tendto wait around.
Leisa Reichelt (19:29):
So what year is Ushi in now?
Emma (19:30):
Yeah, she's in nine.
Leisa Reichelt (19:32):
Year nine.
And so looking forward then.
Do you, I mean, sometimesthere's no point making plans
'cause you just never know.
But have you got any thoughts ofwhat the future might look like,
what the next couple of yearsmight look like?
Emma (19:45):
I was writing her disability inclusion profile
forms over the weekend.
That's one of the questions, andI was thinking because this is
the difficulty as well, a lot ofthe special schools that are out
there, don't, necessarily do thesubjects that my kids are
interested in.
My kids are interested in artssubjects.
We've been talking a little bitabout, maybe looking to become a
coach for other kids, like, youknow, within gymnastics and
(20:07):
skating as you know, who alsomight have similar PDA and maybe
becoming a mentor in that way.
She's very interested inpotentially doing VCE or going
to university, and I think shehas the potential to do that.
It's just whether or not she cando it in the timeframe that this
world works too.
But I don't think, when I lookat the, it's such a shame'cause
(20:27):
there's so many beautifulschools out there that I would
love her to go to.
But the subjects they do, I knowshe'd be bored
Leisa Reichelt (20:34):
Emma, for anyone who's listening, who has a child
who is in that sort of burnout,stuck in bed, stuck in their
room, can't really engage withthe world, hearing the story of
where Ushi is now, fills us withhope.
Emma (20:49):
Yeah.
Leisa Reichelt (20:50):
What did you guys do in that difficult time
that you think has helped to getyou to where you are now?
Emma (20:58):
We trusted our guts and we talked to each other.
But I think trusting my gutmore,'cause I still feel shame
and guilt when I ask for more.
I hate going to the schoolmeetings.
I always feel awful afterwards.
I've had some bad ones, a reallybad one.
But I still hate the fact thatI'm asking to give us more than
what other people get.
(21:18):
Because often people don't wantto give it, so then they'll try
to make you the problem becausethen it's, you know what I mean?
So I think just trying to losethat worrying about what other
people think of you.
Trying to lose that and justtrusting her, backing her, she's
the number one and lots of otherthings have had to drop by the
(21:39):
wayside, but to me that's okaynow.
Uh, trust in my gut standing upfor us, not, not letting her be
in unsafe spaces.
Some teachers don't mean to be,but they can cause terrible harm
in a sensitive child.
And so I won't let her be inthat situation unless I've
(22:00):
vetted them and made sure theyknow what the expectation is
when they're dealing with mychild.
'cause she's been too hurt and Ijust can't., I don't want her to
think that because of herdisability and because of her
illness that makes her any lessvalue in the world.
People used to say, oh, did youhave a good day or a bad day?
Meaning were you able to get outof bed or were you not able to
(22:22):
get out of bed?
It's like, don't make it good orbad.
Because then it's suddenly likeI have to perform for others in
order to be good.
Whereas I think that wasprobably the biggest thing for
me taking this sort of moraljudgment out of all of this
stuff is, is like you are, youare valuable for you.
Leisa Reichelt (22:39):
So when you're engaging with adults who are
going to deal with her, what aresome of the key messages that
you are having to convey to themso that you can feel that
they're going to be safe for herto deal with?
Emma (22:49):
Really explaining nervous system and relational safety and
that relationship is everything.
And that, I have a full ban onanyone talking to my child about
attendance because they will tryand please those people and then
they will push themselves backinto harm.
It's a massive education projectfor us as parents because people
(23:10):
don't know.
The teachers don't know, and ifthey got trained on this stuff,
if we weren't focusing onacademics and whether people
were wearing the right coloredsocks.
And we started focusing more on,you know, how can we be kind to
children in our care.
Then their brains could open sothat they weren't in distress,
and then they could learn.
Leisa Reichelt (23:28):
We have the advantage too, don't we, that we
get to learn it in a veryintensive way.
I know for myself, sometimes myson will have a good week, that
was me doing my quoting fingerstoo around a good week.
And then it, me recognizing thatthen puts pressure on him to
keep that up and then thatpushes him into burnout as well.
And so like, it's so hard justto like
Emma (23:50):
It's so
Leisa Reichelt (23:50):
not get excited and go, oh, maybe we're on the
way out now.
'cause as soon as you startthinking that you're
Emma (23:54):
we
Leisa Reichelt (23:55):
I know you.
Yeah.
Like it takes a long time for usto learn, doesn't it?
So it's not, surprising that therest of the world
Emma (24:00):
No
Leisa Reichelt (24:01):
struggles
Emma (24:02):
not.
It's
Leisa Reichelt (24:03):
yeah, it is tough.
Emma (24:04):
cause it can be very lonely, can't it?
We feel very alone in thissituation.
It's very hard.
Leisa Reichelt (24:08):
That's why we need to have these chats.
On that note, I know we don'thave tons of time left, but I
would love you to talk about theimpact of this journey of
supporting Ushi, how's thatimpacted you, your life, your
relationship?
What's that been like for you?
Emma (24:26):
Yeah, relationship wise, it's really tough.
I think everybody has that,don't they?
At the moment, me and my husbandare still together and sometimes
I'm like, wow, how's thathappen?
Because it I.
tends to be, very common thatpeople are not, because, you
know, at the end of the day, mycare and my energies are going
into my kids and I don't haveany space to look after anybody
else.
So that has an impact.
(24:48):
You know, and I, I, you know,we, we've, we've muddled along
in the sort of views that thiswill, at some point things will
get easier, but who knows?
For me personally, I left mycareer anyways.
I'm very glad I did that and Iretrained as a counselor and
psychotherapist and I work fromhome.
Work-wise, I can, I mean, I'm inand out.
Of course I've got both of themin, they're both on reduced time
table and they're both atdifferent campuses.
(25:09):
So I'm literally like,
Leisa Reichelt (25:10):
Like an Uber driver.
Emma (25:11):
I'm like that.
And I need to be,'cause they getso tired.
It's not like they can't dothese things by themselves.
So it's not like people arelike, oh, why don't you just,
it's like, because then thatwill have a knock on effect,
Leisa Reichelt (25:20):
Yeah.
Emma (25:21):
be able to go for two days.
They won't be able to go forweeks.
So back off with all your, whydon't you.
Leisa Reichelt (25:26):
I remember getting a, a call from my son at
the end of a school day and hewas plunked down in front of his
locker and he's just like, Ijust can't move.
Emma (25:33):
Yeah,
Leisa Reichelt (25:33):
I can't walk through the bus.
I can't, like, I, I'm stuckhere.
We lived a long way from theschool at the time.
I had to get in the car anddrive and fetch him.
And I was a real moment for mewhere I'm just like, wow, this
is actually, it's properlyserious.
Emma (25:45):
Yeah.
They can't even, I mean, I hadthe other day, Ushi.
Bless her.
She's doing so well.
But you know, there are dayswhere she's really burnt out and
she's burnt out over more thanone day.
And one day she really wanted togo, it was her favorite.
It was like Russian or somethinglike that.
And she's just looks, and she'slike, I can't speak(lisping).
It was like literally I can't, Idon't have the energy to move my
(26:07):
mouth, and that's what peopledon't get.
It's it's never a trying thing,
Leisa Reichelt (26:14):
Yeah,
Emma (26:15):
Hmm.
Leisa Reichelt (26:16):
yeah, yeah.
I've got my three closingquestions.
If you could go back in time,Emma, and tell yourself
something, when would you goback to and what would you say?
Emma (26:27):
my God.
Oh my goodness.
I think I would go back to whenI was 11 and I'd just split up
with my best friend and Ichanged myself.
Like I started drinking andsmoking and trying to fit in I
basically was masking, startedto mask and I wish I'd said to
that little girl, you don't haveto do that.
(26:48):
Whew.
Yeah.
Leisa Reichelt (26:52):
I think a lot of late diagnosed autistic women
will feel that very close totheir own hearts.
Emma (26:57):
You don't have to do that.
You're good.
Leisa Reichelt (27:00):
Yeah.
Emma (27:00):
Mm.
Leisa Reichelt (27:01):
That's beautiful.
Emma (27:02):
That's what we can do for our kids though,
Leisa Reichelt (27:04):
I.
So good, so good that we can dothat.
What is one thing that you wouldlike to say to everybody who's
listening to this, who's ontheir own School Can't journey
at the moment?
What would you like them toknow?
Emma (27:17):
Oh, just that you are not on your own and it's really
bloody hard and you're doing anamazing job, and your kids are
going to be so happy they hadyou as their parent.
Oh, I'm going go...
Leisa Reichelt (27:32):
One more.
Emma (27:32):
Yeah.
Leisa Reichelt (27:33):
What's a resource that's been really
helpful for you along the waythat you would like everybody
who's dealing with School Can'tto know about?
I.
Emma (27:40):
many.
Like obviously the School Can'twebsite and the School Can't
group is amazing.
For me, Kristy Forbes was lifechanging.
Doing her Tuning into PDA coursecompletely changed how I
parented and thought abouteverything and that was
incredible.
People like Eliza Fricker bookswere amazing.
Naomi, Naomi Fisher.
Oh my God.
Viv Doors, autistic burnout, Sheis brilliant
Leisa Reichelt (28:04):
Fantastic.
Emma (28:05):
Yeah.
Leisa Reichelt (28:05):
Those are all incredibly useful resources.
We'll put links to those in thenotes so that people can go take
a look at them for themselves.
Emma (28:12):
Thank you.
Leisa Reichelt (28:13):
Emma, thank you so much.
This has been such a wonderfuljourney into sort of
understanding what you'velearned and, what you've
experienced along the way, and Iknow it'll be really helpful for
others to hear and listen to aswell.
Thank you.
Emma (28:25):
having me.
I really do.
Even though I've had a good cry,I do enjoy.
It's nice to talk about it,isn't it?
You know?
Leisa Reichelt (28:31):
Thank you so much.
Emma (28:32):
much.
I better run and pick him up.
Leisa Reichelt (28:35):
Well, I'm sure there are so many of us who can
relate to what Emma's beenthrough over the past few years,
and hopefully some of herinsights and resources have
resonated with you today.
Identifying and understandingburnout can be so tricky, and
it's something that lots of usare going through and it's great
to hear stories of people whohave seen and experienced it
firsthand and also gotten tosome light at the end of what
(28:56):
can sometimes feel like a prettydark tunnel.
We would love to share many moreSchool Can't lived experience
stories with the community.
So if you have a School Can'tstory that you would like to
share, please email us atschoolcantpodcast@gmail.com.
That's one wordschoolcantpodcast and no
apostrophe obviously.
You can also send any feedbackyou have for us to that address
(29:16):
as well.
I am going to put a link to theresources Emma recommended in
the episode notes and also alink to donate to School Can't
Australia.
Your tax deductible donationsassist us to raise community
awareness, to partner withresearchers, to produce
resources like webinars and thispodcast, which all assist people
who are supporting children andyoung people experiencing School
(29:38):
Can't.
If you are a parent or carer inAustralia and you are feeling
distressed, please remember youcan always call the Parent
Helpline in your state.
A link with the number to callis in the episode notes.
Thank you again for listening,and we will talk again soon.
Take care.
Hello and welcome to the School Can't
Experience podcast.
I'm Leisa Reichelt, and thispodcast is brought to you by the
School Can't Australiacommunity.
Caring for a young person who isstruggling to attend school can
be a stressful and isolatingexperience, but you are not
alone.
Thousands of parents acrossAustralia and many more around
the world face similarchallenges and experiences every
(00:26):
day.
Today we have another of ourLived Experience episodes and we
are going to meet Emma Gilmour.
Emma is mum to twoneurodivergent young people who
have each had very individualSchool Can't experiences that
have required very differentkinds of support from Emma.
In this episode, we're going tofocus on Emma's experience
(00:47):
supporting her younger daughter,Ushi through her School Can't
journey.
Before we start, just a quickcontent warning.
In this episode, we do mentionself-harm and suicidal thoughts,
though we don't discuss them inany detail.
Please take care while listeningand do reach out for support if
you need it.
Alright, Emma, I would love foryou to get us started by just
telling us a little bit aboutyou and your family and any
(01:09):
context that you think might behelpful.
Emma (01:10):
Yeah.
So, we are a family of latediagnosed autistic, ADHD human
beings, with the exception of myhusband, who is undiagnosed but
identifies as ADHD/Autistic.
We came over from England in2011 and we both worked in
corporate world, I worked incorporate marketing and he
(01:33):
worked in IT.
And we brought our babies overfrom the UK, 10 months old, my
youngest was, and my oldest wastwo and a half.
We had no idea that we wereneurodivergent.
My littlie, who we're going tofocus on mainly for this
discussion.
She was an interesting, baby inthat she kind of didn't obey any
(01:55):
of the rules of babying.
When she was born, she was stuckto me and she didn't sleep.
I mean, this is normal stories,isn't it?
I also didn't sleep as a child.
I mean, these are all the thingsthat are like your tingle bells,
aren't they?
And I remember she wasbreastfed.
She wouldn't stop breastfeeding.
I was like, no, no, we are onlydoing this for six weeks.
(02:15):
She was like, oh, no, we arenot.
I remember when she was verylittle, I had to carry her in a
sling all the time, like awraparound sling And she was
constantly breastfeeding.
So like breastfeeding wasstimming.
Like, she was literallycomforting herself by sucking my
boob.
It was just my normal, I justhad the baby on my boob the
whole time.
And I remember as well when shewas developmentally like she
(02:37):
tiptoed for ages when she firstwalked, and nobody said
anything.
And we went to sleep school andI was like, what's wrong with
me?
What's wrong with my children?
Why does all this stuff thatworks for everybody else not
work for us?
And you know, it's heartbreakinglooking back on it now because I
believed the people knew whatthey were doing, who I was
(02:59):
listening to and going to foradvice So my youngest child is
now being diagnosed with PDAautistic.
She also has chronic fatigue.
For her, everything is a safetything.
She goes through her world onhigh alert She was a hugely high
masker.
Everyone's like, oh, they'reperfect.
(03:19):
What are you talking about?
And they'd moan about my otherkid and I'd be like, what do you
mean?
He's fantastic at home becausehe's more of a fawner, more
compliant, whereas, my youngerone at home, she'd come home and
the wheels would fall offthinking back on it.
And again, I had no frame ofreference, so these were just
the things we used to do.
they were our normal, I knew mykids couldn't sleep, so that was
(03:41):
a really big issue for us.
So, and of course there's allthis, you know, kids shouldn't
sleep in your room with you, allthat nonsense and, and
eventually you're so tired,you've got no...
you just have to do what feelslike the right thing to do.
Even now, at 16 and 14, I haveboth my kids in bed with me
every night because it meansthey can go to sleep.
You do what you have to do toget you through.
Leisa Reichelt (04:04):
I think that's actually much, much more common
than what people would think,isn't it?
Emma (04:09):
And people are so judgy,
Leisa Reichelt (04:10):
Yeah.
Emma (04:10):
But I look at back my childhood and I think, God, I
would've loved to.
I used to walk around the roomsin my house, try and see if
somebody would let me in theirbedroom, and no one would,
Leisa Reichelt (04:18):
Let's go back then.
What are we going to call youryoungest?
Emma (04:23):
Her nickname at home is Ush
Leisa Reichelt (04:26):
That's very cute.
Let's call her Ushi.
Okay, let's go back in time toUshi's earliest experiences of
formal education.
Talk us through what thatjourney was like.
'cause you were still workingfull-time?
Emma (04:41):
Yeah, so I was, you know, my upbringing was that I was
going to go into a career.
I was going to be able to havekids.
I was going to have, the moon ona stick.
It was only really when I hadchildren, I think it all started
to crumble a bit because allthose masking things that I put
into place as a single person oras a person in a partnership
fell apart.
Which I think is very common,isn't it?
But I know when, she went todaycare first.
(05:05):
Daycare was okay.
They were very caring in there.
She went to a community daycare.
It was very scruffy and lovely,not at all what I would've
wanted.
I imagine at the time I would'vebeen like, oh no.
but that's what we could getinto.
And they were actually veryloving and very nice.
Even school they were actuallycompletely fine with going to
school and everything seemednormal.
There was odd little things butgenerally Ush flew under the
(05:27):
radar.
Very, very high masking.
We felt like a normal family,except for everything was really
hard, like getting people out ofthe house.
We had to go through theserituals of, know, like shower
had to happen in a certain wayand things had to happen in
certain orders for us to moveforward.
Otherwise we had to go back tothe beginning and I'd just be
like, why can't we do this?
(05:49):
What is wrong with me?
Why am I such a bad parent?
Why could everybody else makethis look so easy?
And I can't get mine to schoolwithout, I mean, we get there,
but it would just be a lot ofstuff to get there.
And I remember trying to, getthe train and get into work for
half past eight in the morningand just being like, I'd get
into work and I'd just belike.....
Leisa Reichelt (06:08):
You've already done a day's work, really
haven't you?
Emma (06:10):
And I know everyone feels like that, but it just felt
incredibly intense.
Primary school for them waspretty good.
They had, they seemed to havefriends.
Ushi changed friends she changedfriends regularly, so she'd be,
they'd tell me that she was apopular kid.
So again, this is part of thishigh masking, like appearing to
be like everybody else.
(06:30):
Conforming.
And very high perfectionismtendencies and very good at like
reading what other kids aredoing and what they look like
and how to be like them.
But she used to swap friends.
She had one really good friendall the way from Kinder that
they were like best friendsuntil quite recently.
But other than that, she'd justchanged friends with her years.
(06:52):
And then COVID happened and thatfor us was the sort of beginning
of the end, I suppose.
Particularly in Ushi's case.
The COVID itself actually forour family was a massive relief
and we were all just absolutelystunned by how much happier and
less stressed we were again,signals.
Um, But, the big problem for ushappened, and this is something
(07:16):
that I know it's, it's verycommon, but it's also something
I find unusual in our SchoolCan't community I don't often
hear of so many kids for whomDistance Ed or Home Ed isn't an
option.
For us, one of the biggesttraumas of COVID, particularly
for my youngest, Ushi.
(07:36):
Was that school came home intosafe place.
And so home had been safe.
School had been high maskingwhere we could be what we were
supposed to be.
It had its toll on us.
But when we got home, we closedthe door.
Mom was a safe place.
We were safe.
And then all of a sudden, mumwas a teacher and classroom was
(07:59):
in my room,in my house
Leisa Reichelt (08:02):
Wow.
Emma (08:04):
And then that was, that was kind of it.
And it took a long time for thewheels to fall off.
We kind of of gave up on theteacher and homeschooling pretty
early on.
I think what then happened is Imean, there's so many different
things that could be involved init, like hormones and age as
well.
But when we had to go back toschool in real life, that was
(08:28):
when stuff started to get reallydifficult.
Leisa Reichelt (08:32):
So what year was Ushi in during COVID?
Emma (08:35):
She would've been in grade five, I think.
Leisa Reichelt (08:38):
So like late, late primary.
Emma (08:40):
It's all a bit of a blur to me.
Leisa Reichelt (08:43):
Oh yeah, I hear you.
Same.
Emma (08:45):
Things started to go really badly wrong with her
mental health.
Because she was getting more andmore isolated, we'd given her a
mobile phone and we hadn't putthe right security guards on it.
We had security on everythingelse, but we'd given her this
one thing and we were just like,we'd give it to her early before
high school because she's notgot seeing any friends.
She started to get reallyisolated.
I'm not one to chastise onlineat all because I actually think
(09:06):
it has a lot of benefits but inthis particular circumstances I
was really concerned'cause she,she'd started to self-harm and I
was scared.
I was worried about the peopleshe was talking to because I
also know that these type ofthings can be influenced by
people.
And I know for myself, and youknow, very commonly as well, I,
had eating disorders as ayounger person and it was
(09:27):
definitely a team sport in acertain extent in my school.
So I, there was all these thingsgoing on and I decided that I
was going to have to put theboundary in of, taking the phone
away, really putting all thesecurity safety things and it,
it, it really broke her, thatbetrayal of trust and that
boundary and that, um, whateverhappened there, broke her for a
(09:54):
bit.
She no longer was talking to me,and she, um, she must have been
so alone.
Poor baby.
Because she lost me.
And the people that she wasconnecting with online, whether
or not they were the rightpeople they were a connection
and suddenly it was all gone.
Leisa Reichelt (10:14):
Yeah.
Emma (10:14):
And so things got really serious and she was having
suicidal thoughts and I wasreally scared and I didn't know
what to do.
It's one of these like, how hasthis happened to us?
How did we get here?
I don't know how we got there.
You know, that's sort of likeincredulous.
And, and that desire that wehave, don't we as parents?
I must be able to fix this.
(10:34):
Where's the book?
Leisa Reichelt (10:35):
I've gotta find the thing and then it'll all be
okay.
Emma (10:38):
right?
And the worst thing about itfor, Ushi is, I think the
biggest piece was the riftbetween us.
And that was reallyheartbreaking, I think, for both
of us, and really left herreally isolated.
But the worst thing about it, Ithink, was that all the
professionals that we were goingto, in retrospect, were giving
us really bad information.
Leisa Reichelt (10:58):
Talk a little bit about that.
Emma (10:59):
So basically the first place we went was Royal
Children's, and I was reallyscared.
I thought, I've got no otheroption.
I remember thinking to myself, Iknow you're frightened, but
we've still got to do this.
it was almost that comfortingmyself in my fear, and we've
still got to do this.
That was very helpful.
And then we met the people atthe Royal Children's, and that
was fine.
In the emergency piece.
It was kind of fine, but then wegot referred to their counselor.
(11:21):
We were trying so hard to getsomebody to see us.
We got referred there and therewas just some really unhelpful
things happened.
There's a lot of parent blamingand there was a lot of not
believing our experience andeven our pediatrician who we
ended up getting referred to,who was absolutely brilliant,
very old school, and thank Godwe had her because she at least
got us diagnosed with ADHD andreferred us to get diagnosed
(11:43):
with autism.
But at the time, it was eitherthat we weren't doing something
right at home, or that she wasbeing naughty.
Leisa Reichelt (11:52):
So that kind of real behaviorist viewpoint.
Emma (11:55):
Yeah.
And
Leisa Reichelt (11:55):
my gut
Emma (11:56):
was telling me this is not,
Leisa Reichelt (11:58):
Because by this stage probably you've tried so
many different things.
Emma (12:02):
absolutely.
Well, we did all the rewardcharts and all that nonsense.
And none of it worked.
And what we were doing wasdamaging our relationship with
our kids.
We are feeling awful aboutourselves.
So it's like, no, we're notdoing this anymore.
So again, you have to do thesethings that people tell you to
do and you're trying and you'retrying and, and even like far
down the line as we are now, youstill get that little am I
really doing this right or am I.
Leisa Reichelt (12:23):
Mm-hmm.
Mm-hmm.
Yeah.
Every day.
Emma (12:26):
She really started to deteriorate in 22 to the point
where she became bedbound.
So everyone's like, oh, she'sdepressed.
And they were trying to youknow, tell us oh, you need to
get her out and you need to gether to do more.
Um, and you believe people'causeyou think, well these are the
professionals.
They know what they're doing.
I mean, this is people in placesthat call themselves neuro
affirming, diagnosing PDA kids.
(12:47):
What we now know is autisticburnout, chronic fatigue, and
saying that they need to pushthrough, do more, get out and
get some exercise and some freshair.
We went to high school like Ushiwas really full of hope.
Like, I'm going to go to highschool, it's going to be a
different environment, it'sgoing to be great.
And so we get there and we getall the uniform, we're all ready
to go.
She gets there and the firstweek's, okay.
And then as it deteriorates,deteriorates, deteriorates
Leisa Reichelt (13:09):
Yeah.
Emma (13:09):
going and she's back in bed.
And then we are seeing people atthe Royal Children's.
We're seeing OTs, we're seeingall sorts of people.
And we get referred to thisplace has been very helpful for
a lot of autistic kids, ingetting them back to school.
But my understanding is thatit's a university funded project
and it's a research project.
And the research project, theparadigm that it's trying to
(13:31):
prove is that, if you do certainthings, attendance will
increase.
And the problem that we havewhen we have a PDA autistic kid
who is in burnout, Is that yes,anxiety's involved in it, but
physically, someday she couldn'tlift her head off the pillow
because she'd go one day andthen have to recover.
(13:51):
She really wanted to do well.
But it actually set us backbecause what
Leisa Reichelt (13:55):
Yeah.
Emma (13:56):
the end as, as it was a six week program.
I was 13 week program, I can'tremember, but we couldn't make
it through each week we got lessand there was this, we'd get
calls, you know, if you don'tcomplete the program, it's not
going to work.
You know, if you don't attend,it's not going to work.
Making us the problem, if it wasa trying issue.
I'm like, this is where we are.
(14:17):
She's not sat at home likedancing around she's bedridden.,
and they just couldn't.
And I was giving them all thesebooks by Eliza Flicker and they
were lapping them up.
They were like, this is sointeresting.
And I'm thinking, am I the firstperson to be here with this?
Maybe I was, I don't know.
But, it seems strange.
The people were good, but theywere working on the wrong
paradigm.
The paradigm that they'reworking under is different to
(14:39):
the paradigm that our childrenare living.
Leisa Reichelt (14:42):
This is it though, isn't it?
I think the parents who havedealt with this for a long
period of time have done so muchinvestigation.
In a lot of cases it feels asthough we know so much more than
the professionals that we haveto interact with.
Emma (14:53):
Yeah.
And then they, Unfortunately,don't mean to, but they do harm.
Leisa Reichelt (14:58):
yeah, they do.
Emma (14:58):
And this is what I keep saying to Ushi's secondary
school at the moment, andthey're really trying, but they
keep saying, well, let us speakto Ushi I'm like, no, I'm not
going to let you speak to Ushinot until I
Leisa Reichelt (15:07):
Yeah.
Emma (15:08):
that what you are going to say to her is not going to cause
her harm.
Because you coming in andpushing attendance when she has
chronic fatigue and can't getout of bed, that's going to
cause her harm because she'sgoing to think, they think I'm
bad'cause I can't do this.
Leisa Reichelt (15:23):
Yeah.
So let's talk about Ushi and herprogress through this kind of
chronic fatigue, burnout sort ofphase.
At what point did she get herautism diagnosis?
Emma (15:34):
22, July 22, which kind of around when we went into
burnout, it was
Leisa Reichelt (15:39):
Yeah.
Emma (15:40):
in and out of burnout for a bit, what would happen is
you'd come into the bedroom andyou'd say something to her and
she'd goes, stop shouting at me.
And you could see like all hersenses were completely,
everything was unsafe.
Including us.
The world was unsafe for her.
Leisa Reichelt (15:57):
And did she get a burnout diagnosis?
Emma (15:59):
I had to work really hard to get a diagnosis and I had to
make lots of complaints I wasvery lucky that I managed to get
a pediatrician eventually whowas willing to put it, because
they're so scared to put thesethings because these things
aren't in the DSM, like PDA, Istill think half the
psychiatrists working inneurodiverse don't actually
(16:20):
believe in autistic burnout.
Chronic fatigue everyone canunderstand and that's why we got
the chronic fatigue diagnosis.
Everything got easier for uswhen we got the chronic fatigue
diagnosis, school doctors,allied health professionals,
everybody just backed off a bit.
Leisa Reichelt (16:36):
Okay, so Ushi was kind of in bed sleeping a
lot.
Emma (16:39):
And
Leisa Reichelt (16:40):
Very, very kind of sensory overload.
Emma (16:44):
sensory overload and her passions were she used to be a
big dancer.
She loved dancing, she lovedgymnastics, she loved
performing.
She just got really passionateabout ice skating and
gymnastics, which was her thing.
What I learned from listening topeople like Viv Dawes and Eliza
Fricker, was that look, followtheir passion, low demand, and
follow the passion and let thepassion lead.
And what Viv talks about a lotin her work and her, her books
(17:07):
have been really helpful to me,was this idea of, you know,
letting that passion lead andwhat that's led us to- and it's
been absolutely the rightstrategy, and even when I
convince myself sometimes thatit's not.
You know, she is managing to doso much.
Like last year she was doing,team aerobics, which she really
liked at school.
(17:28):
That was the thing she managedto do.
And she picked back upgymnastics.
So she did gymnastics on aFriday and one hour of team
aerobics.
It was in school, so she waspart of the school, she was part
of the team, it's just likekeeping them engaged with like
the friendship side of things,but not, have to do the other
stuff.
This year she started iceskating, and she started
(17:49):
studying Russian because sheloves ice skating.
So she's going to VictorianLanguages, School on Saturday
morning to study Russian fromnine til 12.20, which to me is
an incredibly long time, but shecomes out of it absolutely
buzzing'cause relational safety.
The teachers are really nice.
She's passionate about thesubject.That relational safety
gives her energy, whereas notfeeling relationally safe to
(18:12):
teachers.
You can see like literally ifshe submits a piece of work at
school and the teacher doesn'tcome back to her or doesn't mark
or doesn't say anything, she'llgo and be checking.
She'll be checking on her Googleclassrooms and you can see her
slowly deflate.
And so again, it's thisrelational safety.
It's being valued, being seen asgood, people caring about you,
you know, you matter.
(18:33):
What I've been working with thehigh school with mainly is like
trying to build relationalsafety and trying to educate
them in the things that we needin order for her to be okay at
school.
Like, knowing what's going tohappen beforehand.
If you're going to change rooms,let us know.
At the moment we're doing dance,which is lovely.
Leisa Reichelt (18:50):
Yeah.
Emma (18:51):
subject of dance, she's doing her aerobics still.
And then she's also doingEnglish, but English at home.
So we've got some support froman advocate person who's been
helping us with that sort of,just'cause she's missed so much.
So things are looking up.
Ushi's really happy, she admitsshe's really lonely, she's
missing friends.
She wants to make friends andI'm sure she will'cause she's a
(19:12):
beautiful human.
But the whole experience kind ofis not conducive for teenage
relationships to keep going.
You know, having two years whereyou're bedbound, is not, um.
You know, teenagers don't tendto wait around.
Leisa Reichelt (19:29):
So what year is Ushi in now?
Emma (19:30):
Yeah, she's in nine.
Leisa Reichelt (19:32):
Year nine.
And so looking forward then.
Do you, I mean, sometimesthere's no point making plans
'cause you just never know.
But have you got any thoughts ofwhat the future might look like,
what the next couple of yearsmight look like?
Emma (19:45):
I was writing her disability inclusion profile
forms over the weekend.
That's one of the questions, andI was thinking because this is
the difficulty as well, a lot ofthe special schools that are out
there, don't, necessarily do thesubjects that my kids are
interested in.
My kids are interested in artssubjects.
We've been talking a little bitabout, maybe looking to become a
coach for other kids, like, youknow, within gymnastics and
(20:07):
skating as you know, who alsomight have similar PDA and maybe
becoming a mentor in that way.
She's very interested inpotentially doing VCE or going
to university, and I think shehas the potential to do that.
It's just whether or not she cando it in the timeframe that this
world works too.
But I don't think, when I lookat the, it's such a shame'cause
(20:27):
there's so many beautifulschools out there that I would
love her to go to.
But the subjects they do, I knowshe'd be bored
Leisa Reichelt (20:34):
Emma, for anyone who's listening, who has a child
who is in that sort of burnout,stuck in bed, stuck in their
room, can't really engage withthe world, hearing the story of
where Ushi is now, fills us withhope.
Emma (20:49):
Yeah.
Leisa Reichelt (20:50):
What did you guys do in that difficult time
that you think has helped to getyou to where you are now?
Emma (20:58):
We trusted our guts and we talked to each other.
But I think trusting my gutmore,'cause I still feel shame
and guilt when I ask for more.
I hate going to the schoolmeetings.
I always feel awful afterwards.
I've had some bad ones, a reallybad one.
But I still hate the fact thatI'm asking to give us more than
what other people get.
(21:18):
Because often people don't wantto give it, so then they'll try
to make you the problem becausethen it's, you know what I mean?
So I think just trying to losethat worrying about what other
people think of you.
Trying to lose that and justtrusting her, backing her, she's
the number one and lots of otherthings have had to drop by the
(21:39):
wayside, but to me that's okaynow.
Uh, trust in my gut standing upfor us, not, not letting her be
in unsafe spaces.
Some teachers don't mean to be,but they can cause terrible harm
in a sensitive child.
And so I won't let her be inthat situation unless I've
(22:00):
vetted them and made sure theyknow what the expectation is
when they're dealing with mychild.
'cause she's been too hurt and Ijust can't., I don't want her to
think that because of herdisability and because of her
illness that makes her any lessvalue in the world.
People used to say, oh, did youhave a good day or a bad day?
Meaning were you able to get outof bed or were you not able to
(22:22):
get out of bed?
It's like, don't make it good orbad.
Because then it's suddenly likeI have to perform for others in
order to be good.
Whereas I think that wasprobably the biggest thing for
me taking this sort of moraljudgment out of all of this
stuff is, is like you are, youare valuable for you.
Leisa Reichelt (22:39):
So when you're engaging with adults who are
going to deal with her, what aresome of the key messages that
you are having to convey to themso that you can feel that
they're going to be safe for herto deal with?
Emma (22:49):
Really explaining nervous system and relational safety and
that relationship is everything.
And that, I have a full ban onanyone talking to my child about
attendance because they will tryand please those people and then
they will push themselves backinto harm.
It's a massive education projectfor us as parents because people
(23:10):
don't know.
The teachers don't know, and ifthey got trained on this stuff,
if we weren't focusing onacademics and whether people
were wearing the right coloredsocks.
And we started focusing more on,you know, how can we be kind to
children in our care.
Then their brains could open sothat they weren't in distress,
and then they could learn.
Leisa Reichelt (23:28):
We have the advantage too, don't we, that we
get to learn it in a veryintensive way.
I know for myself, sometimes myson will have a good week, that
was me doing my quoting fingerstoo around a good week.
And then it, me recognizing thatthen puts pressure on him to
keep that up and then thatpushes him into burnout as well.
And so like, it's so hard justto like
Emma (23:50):
It's so
Leisa Reichelt (23:50):
not get excited and go, oh, maybe we're on the
way out now.
'cause as soon as you startthinking that you're
Emma (23:54):
we
Leisa Reichelt (23:55):
I know you.
Yeah.
Like it takes a long time for usto learn, doesn't it?
So it's not, surprising that therest of the world
Emma (24:00):
No
Leisa Reichelt (24:01):
struggles
Emma (24:02):
not.
It's
Leisa Reichelt (24:03):
yeah, it is tough.
Emma (24:04):
cause it can be very lonely, can't it?
We feel very alone in thissituation.
It's very hard.
Leisa Reichelt (24:08):
That's why we need to have these chats.
On that note, I know we don'thave tons of time left, but I
would love you to talk about theimpact of this journey of
supporting Ushi, how's thatimpacted you, your life, your
relationship?
What's that been like for you?
Emma (24:26):
Yeah, relationship wise, it's really tough.
I think everybody has that,don't they?
At the moment, me and my husbandare still together and sometimes
I'm like, wow, how's thathappen?
Because it I.
tends to be, very common thatpeople are not, because, you
know, at the end of the day, mycare and my energies are going
into my kids and I don't haveany space to look after anybody
else.
So that has an impact.
(24:48):
You know, and I, I, you know,we, we've, we've muddled along
in the sort of views that thiswill, at some point things will
get easier, but who knows?
For me personally, I left mycareer anyways.
I'm very glad I did that and Iretrained as a counselor and
psychotherapist and I work fromhome.
Work-wise, I can, I mean, I'm inand out.
Of course I've got both of themin, they're both on reduced time
table and they're both atdifferent campuses.
(25:09):
So I'm literally like,
Leisa Reichelt (25:10):
Like an Uber driver.
Emma (25:11):
I'm like that.
And I need to be,'cause they getso tired.
It's not like they can't dothese things by themselves.
So it's not like people arelike, oh, why don't you just,
it's like, because then thatwill have a knock on effect,
Leisa Reichelt (25:20):
Yeah.
Emma (25:21):
be able to go for two days.
They won't be able to go forweeks.
So back off with all your, whydon't you.
Leisa Reichelt (25:26):
I remember getting a, a call from my son at
the end of a school day and hewas plunked down in front of his
locker and he's just like, Ijust can't move.
Emma (25:33):
Yeah,
Leisa Reichelt (25:33):
I can't walk through the bus.
I can't, like, I, I'm stuckhere.
We lived a long way from theschool at the time.
I had to get in the car anddrive and fetch him.
And I was a real moment for mewhere I'm just like, wow, this
is actually, it's properlyserious.
Emma (25:45):
Yeah.
They can't even, I mean, I hadthe other day, Ushi.
Bless her.
She's doing so well.
But you know, there are dayswhere she's really burnt out and
she's burnt out over more thanone day.
And one day she really wanted togo, it was her favorite.
It was like Russian or somethinglike that.
And she's just looks, and she'slike, I can't speak(lisping).
It was like literally I can't, Idon't have the energy to move my
(26:07):
mouth, and that's what peopledon't get.
It's it's never a trying thing,
Leisa Reichelt (26:14):
Yeah,
Emma (26:15):
Hmm.
Leisa Reichelt (26:16):
yeah, yeah.
I've got my three closingquestions.
If you could go back in time,Emma, and tell yourself
something, when would you goback to and what would you say?
Emma (26:27):
my God.
Oh my goodness.
I think I would go back to whenI was 11 and I'd just split up
with my best friend and Ichanged myself.
Like I started drinking andsmoking and trying to fit in I
basically was masking, startedto mask and I wish I'd said to
that little girl, you don't haveto do that.
(26:48):
Whew.
Yeah.
Leisa Reichelt (26:52):
I think a lot of late diagnosed autistic women
will feel that very close totheir own hearts.
Emma (26:57):
You don't have to do that.
You're good.
Leisa Reichelt (27:00):
Yeah.
Emma (27:00):
Mm.
Leisa Reichelt (27:01):
That's beautiful.
Emma (27:02):
That's what we can do for our kids though,
Leisa Reichelt (27:04):
I.
So good, so good that we can dothat.
What is one thing that you wouldlike to say to everybody who's
listening to this, who's ontheir own School Can't journey
at the moment?
What would you like them toknow?
Emma (27:17):
Oh, just that you are not on your own and it's really
bloody hard and you're doing anamazing job, and your kids are
going to be so happy they hadyou as their parent.
Oh, I'm going go...
Leisa Reichelt (27:32):
One more.
Emma (27:32):
Yeah.
Leisa Reichelt (27:33):
What's a resource that's been really
helpful for you along the waythat you would like everybody
who's dealing with School Can'tto know about?
I.
Emma (27:40):
many.
Like obviously the School Can'twebsite and the School Can't
group is amazing.
For me, Kristy Forbes was lifechanging.
Doing her Tuning into PDA coursecompletely changed how I
parented and thought abouteverything and that was
incredible.
People like Eliza Fricker bookswere amazing.
Naomi, Naomi Fisher.
Oh my God.
Viv Doors, autistic burnout, Sheis brilliant
Leisa Reichelt (28:04):
Fantastic.
Emma (28:05):
Yeah.
Leisa Reichelt (28:05):
Those are all incredibly useful resources.
We'll put links to those in thenotes so that people can go take
a look at them for themselves.
Emma (28:12):
Thank you.
Leisa Reichelt (28:13):
Emma, thank you so much.
This has been such a wonderfuljourney into sort of
understanding what you'velearned and, what you've
experienced along the way, and Iknow it'll be really helpful for
others to hear and listen to aswell.
Thank you.
Emma (28:25):
having me.
I really do.
Even though I've had a good cry,I do enjoy.
It's nice to talk about it,isn't it?
You know?
Leisa Reichelt (28:31):
Thank you so much.
Emma (28:32):
much.
I better run and pick him up.
Leisa Reichelt (28:35):
Well, I'm sure there are so many of us who can
relate to what Emma's beenthrough over the past few years,
and hopefully some of herinsights and resources have
resonated with you today.
Identifying and understandingburnout can be so tricky, and
it's something that lots of usare going through and it's great
to hear stories of people whohave seen and experienced it
firsthand and also gotten tosome light at the end of what
(28:56):
can sometimes feel like a prettydark tunnel.
We would love to share many moreSchool Can't lived experience
stories with the community.
So if you have a School Can'tstory that you would like to
share, please email us atschoolcantpodcast@gmail.com.
That's one wordschoolcantpodcast and no
apostrophe obviously.
You can also send any feedbackyou have for us to that address
(29:16):
as well.
I am going to put a link to theresources Emma recommended in
the episode notes and also alink to donate to School Can't
Australia.
Your tax deductible donationsassist us to raise community
awareness, to partner withresearchers, to produce
resources like webinars and thispodcast, which all assist people
who are supporting children andyoung people experiencing School
(29:38):
Can't.
If you are a parent or carer inAustralia and you are feeling
distressed, please remember youcan always call the Parent
Helpline in your state.
A link with the number to callis in the episode notes.
Thank you again for listening,and we will talk again soon.
Take care.
Popular Podcasts
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.