Imagine the courage it takes to navigate the stormy seas of parenting while steering the ship of your own business—especially when your child's needs are as unique as their fingerprints. That's the reality Cassie faced, and she's here to share the map she drew through it all. From the inception of The Carer's Place to its heartfelt farewell, Cassie's saga as a business-savvy mother and advocate for the neurodivergent community paints a vivid picture of resilience and empowerment.
www.tcpbusiness.com.au
danabaltutis.com, mytherapyhouse.com.au, https://mytherapyhouse.com.au/your-childs-therapy-journey/ https://www.danabaltutis.com/services
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Episode Transcript
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Dana (00:01):
Hi, Cassie, welcome to my podcast, the Empowered Parent.
I am so excited to have youhere today.
You are a mother of two boys,one of which has a disability,
and you are a business owner, oran ex-business owner, in
transition to being somethingelse, in transition to being
(00:23):
something else, and you recentlysold your company, the Carer's
Place, that supports so manyparents and clients to live
their best lives, and I knowthat I have often reached out to
you to support our families andrarely, rarely you said no.
So you've helped so manyfamilies and today I wanted to
(00:44):
have your magic touch here onthe show and so you could share
some of your challenges andtriumphs, both as a parent of a
child with special needs andanother child that doesn't have
special needs, and someone whoalso has devoted their well,
(01:06):
their last many, many yearssupporting parents every day to
be their best selves, while yousupported your children and
yourself.
So, Cassie, welcome, and couldyou please start by telling the
listeners a little bit aboutyourself in your own words?
Cassie (01:25):
Thank you, what an introduction.
Thank you, no, it's an absolutepleasure to be here.
Yes, my name is Cassie.
I do have two beautiful boyswho are now adults 20 and 22,
Matthew and Joshua.
Yes, I am an ex-business owner.
I still have my own business,but I'm in that transitional
(01:45):
phase and you know, I was asingle parent for many years of
my beautiful boys and I wouldexplain or describe myself as
being deeply passionate aboutpeople helping people, loving
people supporting people to betheir best selves.
You know very much a believer ofyou know a hand up kind of
(02:10):
mindset.
Yes, everything has been aboutmy children and helping others.
I feel like in my life I havegone through so many tough
things but they're not in vainif I'm able to share those
learnings or those experiencesso others don't have to do it so
tough.
And that's pretty much driveseverything that I do.
(02:33):
Oh it's beautiful that'sbeautiful and so, yes, I've sold
my business just recently, fiveweeks ago, which was a big
process I built my business from.
I guess I was looking forsomething for my son and for
myself in the sphere of NDIS andI couldn't find it.
(02:54):
I couldn't find the quality, Icouldn't find what we were
looking for.
At the same time, I was lookinglike I needed to gain some sort
of employment.
Who's going to want to employme?
I have this baggage.
I need flexibility, all ofthose sorts of things.
I don't have a degree, so noone's going to be interested.
You know all of those sorts ofthings, and so I built this
(03:14):
business out of need for my sonand myself to get the help that
we required after transitioningonto the NDIS.
Dana (03:27):
What was your business, Cassie.
Cassie (03:29):
So my business is the Carer's Place and so essentially
for those who know NDIS, it's asupport coordination.
So we help people understandtheir NDIS plans, use their NDIS
plans, connect with qualityproviders, navigate the NDIS in.
Use their NDIS plans, connectwith quality providers, navigate
the NDIS in times of crisis.
We would support them with allsorts of other community and
(03:52):
government systems and thereason that it was so difficult
was I had no help For the firsttwo years.
Matthew had his NDIS planningtransition from a state-based
service I'll say that loosely toNDIS, and for the first two
years we never used his planbecause I was so overwhelmed and
(04:14):
I kind of thought if I amstruggling to understand this
system, how areeveryone else, particularly
those who are vulnerable, ableto navigate this monster, this
beast of a system.
At the same time, I'd createdan online community on Facebook
(04:36):
just for parents and carers toshare stories, to support each
other, you know, so that theydidn't have to do it as tough.
So, yeah, I built it from uh,my spare room, um, and that was
in uh 2016 17.
Uh started support coordinationin 2018.
(04:58):
Um had a staffing of about 12and sold um not so long ago
because my life changed.
Dana (05:05):
Wow.
So parents who are thinkingabout what should I do with my
life when they have a little bitmore time, if their child goes
to school or if they've gotbetter supports for their child,
they too can, you know, followtheir heart and build a business
from Anyone can, yeah.
Cassie (05:24):
Okay, if you are deeply passionate and moved by
something, anyone can build abusiness.
It is overwhelming, it's notfor the faint of heart.
But if you have a deep drive tomake a difference, to create
positive change, absolutely youcan.
Dana (05:40):
And yours was so successful, Cassie.
Yeah, you had waiting lists andall sorts right yeah.
Cassie (05:48):
Yeah, we really had capacity.
Yeah, which is mind-blowing andI probably haven't taken the
time yet to fully reflect.
Dana (05:55):
Yeah, yeah, well, it's only five weeks, right, not long
.
So, cassie, I guess, as abusiness owner, but also as a
parent of two children, oneneurodivergent what were some of
the most difficult times beinga parent and a business owner
(06:16):
for you?
Cassie (06:18):
Difficult times.
How long have you got?
Let's see.
So I might just explain alittle bit about the boys first
and our situation.
Dana (06:28):
Yeah, that'd be great.
Cassie (06:29):
That'd be great.
So two boys, two young men.
Matthew is 22.
Matthew was born with cysticfibrosis and now we know he was
born.
He's autistic, he also has ADHDand has a number of other
comorbidities that go with that.
So cystic fibrosis is a healthcondition that affects the lungs
(06:51):
and digestive system and isvery serious, and we were told
when he was born that he had alife expectancy of 27.
Wow, I was 24 at the time of 27.
(07:12):
Wow, I was 24 at the time.
And so then Joshua, he is 20.
So there's 21 months betweenthem.
Josh is also actuallyneurodivergent.
He has ADHD as well, and lastyear I found out that I am, and
I'm also autistic.
That's another story.
But early on, I think Joshuawas 18 months old, Matthew was
(07:35):
three when my partner and Iseparated their dad and so
navigating this whole world, youknow on my own as a very young
woman, young mum certainlydifficult.
But being thrust into the realmof the health system was very,
(07:55):
very challenging and I reallydidn't pay much attention to
biology when, I was at school,and so you know having
conversations and having to makedecisions with doctors for your
baby very, very verychallenging, and it became more
(08:17):
and more challenging as Matthewgrew and I had Joshua, and when
Joshua was four weeks old, fourweeks old, four months old I
made the decision to go andstudy naturopathy.
I didn't know anything about thebody, of course, why wouldn't
you?
I wasn't working, but I hadthis deep yearning to be able to
(08:42):
understand the body so that Icould make informed decisions
for Matthew.
So I wasn't railroaded becausesome of the early experiences of
hospital when I was pregnantwith Joshua, I was just being
told you have to do this, youhave to do that for your child.
It didn't feel right.
I could feel it in my bones andin my gut, you know, and I
(09:04):
would sort of try and questionit, but I didn't have the tools
that I needed to be able toadvocate and to articulate what
I was feeling, and you know.
Question Because, just because adoctor says something doesn't
necessarily mean it's right foryour child, and so those times
were particularly difficult, andso I went and learned.
(09:26):
Now you don't have to go and doa course or go and study, but
you can immerse yourself ineducation, um and, and education
can be talking to people, itcan be research on the internet.
Be careful with that.
That comes with a disclaimer be, careful of dr google, but you
can find information whereveryou look.
(09:47):
It doesn't mean you have to takeit all on board, but it helps
you make decisions.
It helps you be able to becurious, to ask questions or to
be empowered and to be empoweredright.
So yeah, navigating systems,government systems is probably
one of the most difficult thingsthat I had.
And then the isolation as aparent.
(10:10):
Right, you feel very, veryalone.
Back then we didn't have socialmedia, we didn't have an
ability to connect to people.
So, as a young mum, when youhave cystic fibrosis, you can't
mix with others because of crossinfection.
So I was very, very isolated.
My family didn't live close by.
(10:32):
They had things going on aswell.
So very, very challenging tonavigate and you constantly
question yourself, constantlyquestion yourself Am I doing the
right thing?
Should I go to hospital?
Shouldn't I go to hospital?
What are they going to think ofme?
You know, am I good enough?
Am I a good enough parent?
The pure fact that you'reasking that, you know, tells you
(10:54):
that you are because you'reshowing up every day and you're
wanting to do better and bebetter.
There's a lot of pressure thatwe put on ourselves as parents.
So you know those werechallenging times.
I think staring you know yourown child's mortality in the
face is pretty tough.
Yeah, that's up there.
(11:15):
And you know it's interestingbecause Matthew was born with
cystic fibrosis.
They put a number on his lifewhich I completely rejected and
you know it was almostcompletely rejected and you know
it was almost like a red flag.
You know that I was actuallygoing to prove them wrong, but
they put this sort of thoughtwell in your mindset.
(11:35):
This is how life's going tolook.
And then, when Matthew was nineyears old, he fell out of a tree
, five meters out of a tree.
He fell out of a tree fivemetres out of a tree and we
nearly lost him.
So he sustained a very serioushead injury, a shatter fracture
through his skull, depressedfracture, broke three vertebrae
(11:57):
in his back.
You know he was a very, very,very sick boy.
But that gives you perspectiveright.
Sick boy, um, but that givesyou perspective right.
And I learned, I think, fromthat.
You know that all the toughtimes and all of the tough that
you go through, there arelessons in there, there is a
light.
There's always like you mightnot realize what that is right
(12:17):
now, but it's preparing you,it's making you stronger.
It's like using your musclesright.
When you exercise, you stressyour muscles, you know, but they
become stronger.
Dana (12:28):
Is that what you think when you're in those challenging
times, Cassie?
Is that what's going throughyour mind?
Yeah, now.
Well, no, at that time, soearly on, no no, how did you get
?
Through it, like what were youthinking?
Cassie (12:43):
to get through it.
I think in those times you'rejust doing the best you bloody
can.
Dana (12:48):
Surviving.
Cassie (12:49):
Surviving.
You're exhausted, you're beyondexhausted, and I don't mean
tired.
I need a sleep, exhausted.
Every part of your being isexhausted and you know you're
just doing the best you can, butthen you've got other things to
consider.
You know you're just doing thebest you can, but then you've
got other things to consider.
You know I was always worriedabout Matthew, but I knew he was
(13:10):
in hospital, he was relativelysafe.
What about Josh?
What's going on for Josh?
It was deeply distressing beingseparated from Josh, and that's
for me as an adult.
Imagine what it's like as alittle person who didn't get to
see their dad.
Very often their mum, theirworld and Matthew are away from
(13:30):
you know.
So, so tough, so quite oftenwhen Matthew was in hospital or
we're going through the tougheststuff, I was almost more
worried about Josh, you know,and trying to juggle that.
And that's where communitycomes in, you know, and being
able to feel okay with askingfor help or accepting help, but
(13:50):
quite often we don't know whathelp we need.
Yes, and so we need someoneelse to actually just step in.
Dana (13:57):
Yes or do that yes?
Cassie (14:00):
I find it really interesting, an interesting
conundrum for both sides, forcommunity and the person who's
going through.
You know, whether you call itdeep trauma or tough times or
what have you is to know when tostep in, when to step back, how
to help, because saying I'mhere if you need just isn't
enough, but you also don't wantto encroach on that person's
(14:22):
space and what have you?
But you know, it's a mindsetthing.
I used to think, oh, I have todo this, this is my
responsibility, I have to dothis on my own.
It's not the case.
And it takes a deep amount ofstrength and courage to accept
and ask for help.
(14:42):
And again, like flexing amuscle, it gets easier and
easier as you go on and do itmore and more.
Dana (14:49):
And I think you saying this, I'm starting to think
about support coordination andhow I've always believed that
support coordination isimportant, intricate, to NDIS,
because there will be peoplethat have done it all by
themselves families and theydon't know what to ask for and
(15:09):
how to ask.
And often the supportcoordinators are like the
negotiators, so they're thebuffer that says it's okay, you
can ask for help, let's just doone little thing, so you're like
the personal coach in gettingsupports.
I see that, but, um, I alsoknow that ndis are changing
around support coordination, so,um, that's going to be a very
(15:32):
interesting um field where youknow, I think that's, uh, I
think.
Then, personally, I think thereneeds to be more support
coordination, um, because I knowthat some people don't
understand or don't know how toask for help.
Like you say, it's all outthere, just look for it.
Cassie (15:52):
Yeah, no worries.
Dana (15:54):
I know, because it's very overwhelming and not everyone,
not every provider is suited tothat family.
Cassie (16:01):
No, absolutely, and I think families are so scared of
doing the wrong thing so they donothing.
Dana (16:07):
You know it's that flight freeze, they freeze, they don't
do anything because they don'twant to do the wrong thing.
Cassie (16:14):
I'm absolutely with you.
I've always said that I thinkanyone new to the NDIS needs
support coordination for atleast a year because a huge
proportion of that role iseducation.
It's capacity building rightand education and helping people
set themselves up, because wesee a lot of people who don't
(16:35):
use their plans.
They don't know what to do theydon't understand.
Dana (16:38):
And burn out and they're exhausted, but I mean that's a
massive gap in the scheme, rightnow and imagine if you had
support coordination back in thedays when you were younger and
you were, you know, togglingbetween Josh, you know, like
that would have been so nice foryou.
Cassie (16:55):
Exactly, and that's one of the things that you know was
a trigger for me to do somethingand do support coordination,
because first two years wedidn't have support coordination
.
Next year we had it and we hadI don't know seven hours or
something, and when we were indeep crisis because I had asked
for support coordination,because I just didn't know what
(17:15):
was going on and someone hadsaid oh, you probably need this,
okay, no worries.
And when we were struggling andtrying to get things happening,
you know that supportcoordinator hopped on Google and
sent me three names ofpsychologists when you know, my
son was in deep crisis.
I thought we've got to be ableto do better than this.
(17:39):
But there are so many qualitysupport coordinators out there
who genuinely make life-changingdifferences for people, and I
know that we did that as well.
It is such an important role.
It will be interesting to seehow the changes that are you
know, I guess, coming we knowchanges are coming are going to
(18:03):
impact that role.
I think some things will beenhanced and some people will
get a lot more help and we'llsee.
Dana (18:12):
We'll see.
Cassie (18:13):
I think there'll be a lot more regulation around it,
and that's a clarity and that'sa good thing for everyone
because it's probably one of themost confusing things about
support coordination or the NDISis knowing whose responsibility
is.
Dana (18:28):
Yes, yes, um.
So, during your challengingtimes because it was like at the
beginning and then you knowthroughout your life, um your
child's life, you know you werein and out of hospitals and
things like that how, how didyou keep yourself resilient, how
did you keep yourself strong,like, what was some of the
(18:49):
strategies that you were usingfor yourself?
Cassie (18:51):
yeah, at movement, so um looking after myself, so
exercise, walking, um talking topeople you know having did you
schedule those times in or werethey no?
And you know, retrospect thethings that are important to you
do need to schedule in, yes,and whether that's a walk or
(19:16):
whether it's, you know, reachingout to someone or listening to
a podcast, or whatever it is,you do need to schedule it
because everything becomes apriority over you as a parent.
It always does so, yes,retrospectively, and even now,
you know, I schedule my exercisetime and quite often I need an
(19:40):
accountability partner.
Yes, right, yes.
So, whether it's a coach orwhatever, I need someone to be
accountable to because I'malways going to put myself last
which is a terrible thing, butit's just what we do.
It's not a conscious thing.
There's always going to besomething else that's more
important.
Dana (19:58):
Definitely there's always going to be something that comes
up Definitely.
And I think if people don'thave people in their lives that
they can work with or they don'thave the funding to get a
personal coach or whatever, Iknow myself I've got like a
Garmin watch or you can get anApple watch or whatever, and
there's challenges in there andthere's such a community out
(20:18):
there that you can connect with.
And I know and I have mentionedon another podcast, my husband
is all about the badges on theGarmin watch, yeah, yeah.
So he's like oh, I need to gofor my walk because I need to
get more steps than X, y, z andyou know, again, it's
accountability to yourself.
Cassie (20:38):
Yeah, exactly, and I think if I you know, this is a
really interesting time to havea conversation about parenting
because it makes me look backwhich we often don't necessarily
do and reflect.
But I am a deeply reflectiveperson and you know, I think
when I went into supportcoordination I had done a couple
(21:02):
of years where I was purelysupporting parents and carers to
look after themselves, becauseI know and knew that when you
look after yourself, then theones that you care for are going
to be so much better off.
And I was proof in that puddingif you like.
And so a lot of the work that wedid when I moved into support
(21:23):
coordination was yes, we findout about the child, and what
have you and what about you wasalways a question at the end of
that time together, talk to meabout you, how are you?
And quite often that was quiteconfronting for people.
They didn't like mums or dads.
(21:44):
They didn't.
No one had ever asked aboutthem before.
Um, and so when we're whetherit's we're working with a person
with a disability or whetherwe're working with a parent and
we're trying to find, you know,some joy and some balance in
their lives, it's, um, I guess,questioning and being curious
about who they are what lightsthem up inside, and if we start
(22:06):
there, then everything else willflow.
So for a parent, you know itmight be, you know, can you
close your eyes?
What did you love when you were?
Dana (22:15):
a young person.
Cassie (22:17):
And what lit you up?
And it might have been music,or it might have been dance, or
it might have been something.
Okay can we introduce just alittle bit of that into your
life?
And it's the same for childrenas well.
And so it doesn't have to behard.
It's just helping that persontap back into and reconnect with
themselves.
And some people just didn'tknow, you know, and that's
(22:40):
really, really sad.
I think self-awareness is soimportant and we're often doing
things, so many things, foreveryone else.
We kind of lose ourselves.
But having an element ofself-awareness is going to, I
think, help you get throughthose tough times.
Definitely you know you can setyourself up and set yourself
(23:03):
some tools and a toolbox, if youlike, of things that you will
need.
When you don't know what youneed, Definitely I go to.
Dana (23:13):
And I think you know self-awareness, self-reflection
a lot of people fear thatbecause it can be very
confronting and people get veryworried that they're going to
find something they don't likeor they feel like they're not
good enough or oh my gosh, howam I going to work with that?
And there are people out therethat can help parents, and
(23:37):
whether it's a mentor,psychologist, coach, social
worker, counsellor, and I alwayssay, you know, if I say that to
parents, they might say, oh,but my friend always, you know,
is there for me.
And you're shaking your head,cassie, I am also shaking my
head.
(23:57):
Can you talk to that for alittle bit?
Cassie (23:59):
Yeah, yeah, look, friends and community are
important.
Look, friends and community areimportant.
But I think they're alwaysgoing to, you know, follow a
particular narrative or whatever.
They're not going to.
They're going to have thoughts,they're going to have judgments
(24:21):
.
They're going to notnecessarily be there for you in
the way that you need.
I think early on I didn't haveany counselling, any coaching
with Matthew, I didn't have anysocial work.
We had nothing and you know, wewere really let down.
I was really let down.
I think.
For the last 10 years I have,I've had coaching, I've engaged
(24:44):
counsellors, I've done immenseamounts of art therapy you know
and I'm not an artist, becauseart therapy is nothing to do
with art, but what it does is ithelps you to be kind to
yourself, to really lean intoself-compassion.
You know we are meaning-makingmachines, right, and we being
(25:06):
humans, right.
So we tell ourselves storiesand quite often, um, they can be
negative stories or inaccurate.
If we're trying to make meaningof something, um, and we don't
have all of the information, uh,and then that becomes our truth
, um, and being able to workwith a coach or with a
counsellor or a social workerthey can actually identify, help
(25:29):
us identify our own bullshitright and disseminate between
what's the truth and you knowwhat are actually stories or
what have you.
Dana (25:41):
And most of the in the training that I've had, in the
coaching training that I've had,in the coaching training that
I've had, it's 95% of ourperception is unconscious.
Yes, so it's about how do youwork with that and you know,
it's things that we just doautomatically.
We don't think about it, andit's about working with a coach
(26:05):
or a mental health professionalto really unleash those.
Art therapy is a right brainthing.
So you are always going intothe unconscious and stuff comes
up that you are not even awareof.
People say, oh, but what ifthis stuff comes up and I don't
know how to deal with it?
The unconscious is going topresent things to you when
you're ready.
Cassie (26:25):
Yeah, that's right it's just amazing it is.
I love this, I love this.
It is, it's um, it's beenliterally life-changing for me,
and I think that's when you knowyou asked before about you know
, um, did I know about learningthe lessons or or what have you?
And I didn't, until I startedworking with someone else.
(26:46):
And so that's what I think youknow working with someone else
helps you build resilience right.
It gives you tools andstrategies to be able to work
with your stuff, but it alsoallows you to let stuff go, to
be kind to yourself, to becompassionate and also to
identify behaviours that mightnot be working for you you know,
and work on new ways of beingthat are less, and I think it's
(27:11):
about finding the right person.
Oh yes.
Dana (27:14):
So you know, I know that people you know will go to a
psychologist once and they go.
No, I didn't like them.
And I'm like, yep, that's fine.
Maybe psychology isn't for you.
Maybe you do need to go tosomething like art therapy.
Maybe you need to do coaching.
Maybe you need, you know,getting a personal trainer.
That's also emotional.
You know, I know a massagetherapist that does a lot of
(27:35):
emotional release work.
So it just depends on what isright for you At that point in
time as well, Exactly exactly,Absolutely 100%.
Cassie (27:45):
I've always said, and always, probably, oh, for the
last 15 years, that, uh, for me,you know, hiking and and
exercise is that little pill forme you know, um, it's just it.
It stops me from having to, um,you know, do life as tough.
(28:05):
It helps me let go of things,but you still need other people,
other professionals, atdifferent points in your life.
You know, last year I usedsomeone different because I was
at a different point in my life.
The previous three years I hadsomeone who was very solid, very
present and helped me, you know, develop myself but also my
(28:26):
resilience in in my work.
And then, before that, I've hadother people and, like you said,
I've had, um, I've had personaltrainers, I've had exercise
physiologists, I've hadcounselors, I've had
psychologists, um, I've workedwith so many different people.
Uh, I used to always say topeople oh, you should see
(28:46):
someone, you should see someoneI never did, and then I did, and
I was like oh yeah, that wasgood advice.
Perhaps I should have takenthat earlier yeah, yeah, yeah,
yeah.
Dana (28:54):
So you know, people say, um, when should I have started?
Oh, years ago.
No, when's the second best timenow?
you know, so start now um, and Ithink there's and again,
getting help for yourself, Iknow is a cultural thing too, so
not every culture sees that asa good thing, you know, because
(29:18):
some cultures are reallyfamily-oriented and it's just
about how we educate people andhow we help people.
And I guess the moreself-reflective parent support
people we have out there, themore we can work with them.
But then we have to know whenwe need to refer to someone
(29:39):
that's a bit more has got moretools than we do.
Cassie (29:43):
I agree, and I think people you know will come up
with reasons why not to do it,and often it'll be I don't have
the time or it's too much money.
But if we don't look afterourselves we will end up in
burnout.
We'll end up very, very, verysick physically.
So it starts off emotionallyand mentally and then it will
(30:05):
manifest into physical and thenyou can't ignore it.
So you're better off to bepreventative and look after
yourself, because it's going topay you back in spades and I've
had to learn that the hard way anumber of times.
So you know it's an investmentin your health.
Dana (30:27):
And so you know it's an investment in your health.
When you've worked with parentsin the past, did you see a lot
of burnout.
Cassie (30:34):
I'm not sure if I ever saw someone who wasn't walking
out the door Right right yeah.
So you didn't see anyone whowasn't exhausted or burnt out
Wasn't exhausted yeah, yeah, andquite often it's the exhaustion
you know there's a myriad ofdifferent ways that exhaustion,
you know plays out.
Exhaustions will come from, butand yes, plays out.
(30:57):
But I saw it more times than Icare to imagine and when you've
been through it, it's very easyto recognise yeah Right.
Yeah, and that was probably oneof the most frustrating things
for me, because I was limited inwhat I could, you know, give,
(31:18):
but also where I could refer,because some of our systems are
a little bit broken, you know.
Dana (31:25):
And it's unfortunate that, say, the NDIS system is about
the child having the problem andwe're putting money in there,
but it's often the carers, Ithink, that really need the
support, because once the carersare supported and feel
resilient and empowered, thenthe child will be okay, you know
(31:47):
that's what I see.
Cassie (31:48):
It's exactly where it needs to start.
It's exactly where it needs tostart and you know, I'm afraid
to say it you know our mentalhealth system, our health system
, even you know carer support.
They just don't meet.
They just don't meet the needand siblings support.
Dana (32:06):
There are not many need and they're not meeting people
where they're at and siblingsupport.
It's non-existent almost.
Cassie (32:15):
There's a few cool programs out there, but you know
, where's the education ondiagnosis or before diagnosis?
Where's the education for thatparent, that family?
Where is the community thatwraps their arms around that
family and empowers them andsupports them.
And educates them so thatthey're going to be okay.
(32:37):
Where is it?
And it's disgusting from myperspective that 22 years ago,
you know we were told Matthewhas CF.
This is how it's going to beand on your way, the same
thing's happening now.
You know a lot of the socialworkers within the hospital
(32:58):
systems don't know any othersupports out there.
They don't connect with youknow whether it's Carers SA or.
You know they don't connectwith you, know whether it's
Carers SA or.
You know we have suchdisjointed systems, which is so,
so sad at this time.
You know in what are we 2024,that we're still facing the same
(33:19):
sorts of things with everythingthat we know these days.
Dana (33:20):
And it's unfortunate that NDIS they talk about they do
talk about, you know, peopleaccessing their Medicare and
everything else.
But how nice would it be ifthey said access Carer's Gateway
.
Yeah, because Carer's Gatewayis for the carers.
Yep, I think that should be anautomatic go to Carer's Gateway.
Absolutely, absolutely.
Cassie (33:44):
Yeah, they're the sorts of things that I'm talking about
, and you know, wouldn't it begreat if we could partner with
those organisations?
So it was seamless you know,that support was seamless For
the whole family, for the wholefamily.
Now I know that there arerecommendations around that in
this NDIS review, but I oftenwonder about those who are
(34:04):
diagnosed with chronic health orwhat have you.
They don't have NDIS.
The supports just aren't therein states.
They're just not becauseeverything went to the NDIS.
You go into a health setting Ifyou've got a child who has, or
if you're a person who has ahealth condition and a
disability, you go into thehealth setting.
(34:26):
That, oh, you've got NDIS goaway.
I'm using my arms ferociously,but I'm pushing.
I'm making a pushing motionbecause that's what happens to
many, many, many people and it'sjust not appropriate.
But yeah, we've got a lot ofwork to do in our society.
(34:47):
However, we've got beautifulcommunities around, but we don't
know where to look, and that'swhere the gap is, I think.
I agree I agree, it's thosereferrals.
Dana (34:59):
What are the things you saw parents most struggling with
in your work with families?
Cassie (35:13):
parents most struggling with in your work with families?
Um, in my work, I think, um,like I said before, not knowing
what to do and not wanting to dothe wrong thing so they don't
do anything.
Dana (35:21):
Yeah, um, accepting help and support and knowing how to
do that you know accepting orinviting people into their homes
whether it's support workers,because that's sometimes hard,
isn't?
Cassie (35:35):
it.
It's outrageously hard becauseyour ego tells you that this is
your responsibility anyway, andit might be your culture or what
have you and then to openyourself up, to have someone
come in and support your personis not only difficult from a
(36:00):
logistical perspective, becausewe've got life going on around,
but, you know, from a heart andemotion, and it's a lot.
Dana (36:11):
Because you're the parent, you're the protector.
Yeah, so you don't want to feellike a failure right, yeah, oh
well, I haven't done the rightthing.
Cassie (36:17):
Someone else has to come in and help, which is not the
case, but they're the sorts ofthings that run through our
minds yeah, why am I not goodenough?
Yeah, why am I not good enough?
Yeah, you know.
And then also you know you haveto then build a relationship
with that person.
You're already exhausted.
You have to build arelationship with that person,
(36:38):
be somewhat vulnerable, directthem.
This is what we want and need.
No, not that way, this way.
So then you have to monitorthem.
It's almost like another jobright so there's that
understanding the NDIS and whatyou can and can't do very, very,
very challenging you know, andthen having to coordinate that
(37:01):
all on top of living a life.
And just because you have asupport coordinator doesn't mean
that necessarily goes away,right?
No, um, and I think, oftenthink, and I said to my team a
lot you know we are here to makethings easier.
If we are becoming part of theproblem, then we're not the
right people Fit.
Dana (37:23):
Yeah, so, so profound, so true, and that's what I say with
our team.
If we're on that problem of thecarousel, you know, it's like
we're all on this carousel, thehorse is going up and down and
everything else, and if we'repart of that, we shouldn't be
there.
No, exactly right we need to bepulling out.
Cassie (37:44):
It takes an ethical and strong service to be able to do
that and sometimes you're sodeep in it you don't actually
realise that you're becomingpart of the problem.
Or creating other problems,which is completely
counterintuitive as to why we'rehere, because we're there to
support people to live life lesshard, to live their best lives,
(38:09):
you know.
Dana (38:11):
Definitely, definitely know, definitely definitely.
Um, what three things could yousuggest to parents who are
listening today to be able tolive their best lives and be the
best parents they can be fortheir children or child?
Cassie (38:30):
what three?
things um, my self-awareness.
You said that was important,yeah, yeah, so one of the, I
guess, learning.
So when I say learning, like Isaid before, I don't mean go out
and you know, go and study orwhat have you, but arm yourself
(38:51):
with with information, gather it, talk to people, find out.
It doesn't mean you need to useall of that information, but
what it's going to do is empoweryou.
It's going to enable you to beable to be able to, you know,
self-advocate, understand what'sgoing on, and that is
exceptionally powerful.
And that is about the condition, your family circumstances,
(39:15):
about whatever it is we neverstop learning as people.
Uh, looking after yourself.
Now we can talk about self-careand everyone oh, I can almost
see the eye rolls yeah, I know Idon't have time, so yeah, it
doesn't have to be aboutpampering yeah this is where
this, this is where theself-awareness comes in right.
(39:37):
Yeah, so you know, from myperspective, self-care is about
knowing yourself well enough toknow what it is that you need
whether it's right now or in thefuture, and arming yourself
with those tools.
So, for instance and I'll use mybusiness as an example, but
I've done this a lot as a parent, you know when I sold my
(39:59):
business, I knew that if I wasto stay at home I would not be
okay.
Emotionally, mentally, I wouldnot be okay.
What I knew was that being innature was deeply therapeutic
for me and that even if I hadwobbly moments, that I would be
okay.
So I, with my husband, set to goout in nature for quite a
(40:25):
number of weeks Now.
I know everyone listening tothis can't necessarily do that,
but a hike, a walk, the beach,sand between your toes, whatever
it is that, for me, was lookingafter myself.
So, it's looking after yourself.
So do you need to blast themusic?
Do you need to just get out andgo and lay down on the grass
(40:45):
outside?
Read something?
A poem, a book?
Do you need to read?
Listen what you know?
Quite often, we just don't giveour permit selves permission to
just be.
We're always doing, doing,doing, doing, doing.
Let's hop off of thatmerry-go-round and give yourself
permission to just be andwhether it's you're on the
lounge or you know you have acup of coffee or whatever it is.
(41:09):
What you need right now is themost important thing.
Dana (41:13):
And like we all have different things okay.
So my husband's thing is we arenature people too, but I know he
just sometimes wants to get onhis computer because he doesn't
have time get on his computerand just internet scroll or
whatever, and I know he's at hiscomputer, I'm not disturbing
(41:36):
him, but then, like when an hour, an hour and a half, two out,
I'm like hello, yeah, you know,because it's easy to um keep
going and it's, and we do needto respect the other people in
the house, but there are thingsthat need to be done as well,
and that's where relationshipsare also really important to
talk to your partner and bereally mindful about what your
(41:58):
partner needs and what you needand let each other know that,
right, that's so important.
Yeah, I think it took me awhile to learn that.
Cassie (42:10):
Yes, absolutely.
I think you know you hit areally important moment there
where you know you asked mebefore what are some of the
toughest stuff?
What are the tough things?
And relationships and thatjudgment and knowing how to
(42:33):
navigate relationships, thosetwo things, a fear of judgment I
think you know you look at thestatistics around relationship
breakdown where there's a personwith a disability in the home
or chronic health like they'rejust shocking.
(42:55):
You know the statistics around amarriage breakdown or a
relationship breakdown.
I still find it difficult tonavigate relationships and not
feel judged.
Or what have you with myparenting?
Or whatever else.
But you know, from myperspective as a mama bear,
(43:16):
you're deeply protective and youdo everything that you think is
right and make all thedecisions for your child in
their best interest, and itmeans that you open yourself up
and expose yourself to judgment.
I was just talking about thisthe other day to someone where
you know they have youngchildren and you're on display,
(43:39):
your parenting is on display andthat can end up.
You know impactingrelationships, whether it's with
your parents or you knowgrandparents, your siblings,
your partner, and how do younavigate that?
How do you navigate throughthat?
Because, you know when, as Isaid earlier to you, I think
(44:03):
Joshua was 18 months and Matthewwas three when my relationship
broke down with their father.
You know, I always felt judgedby other people.
I always struggled to navigaterelationships.
When all of this is also goingon, it's hard enough anyway,
right?
So investing?
(44:23):
So number three, investing inyourself and your relationships
is critical, and if you don't,everything's going to be harder
is critical and if you don't,everything's going to be harder.
Dana (44:36):
And I think the really important thing is I know in my
own relationship, you know we'vegot some boundaries, so no
sarcasm.
That's really important becauseyou know, sarcasm can just lead
you to goodness knows where.
And we've also learned so muchabout our individual differences
(44:58):
, because that's what I'm allabout when I work with the kids,
when I work with the families,so I've put that back into my
family and thinking what are theindividual differences?
What does everybody need?
Processing time, processingspeed.
So I know that I might take forsomething complex, I might take
three hours to process.
My husband takes three days,but I've learned that and the
(45:21):
only way I've learned that isalso by going to a relationship
counselor.
Yep, so it doesn't mean thatwe've got a problem.
We need to go, but one of ussits on the comfy chair, meaning
that we're talking to thecounsellor while the other one
is witnessing and observing, andwe get to know about each
other's processes and styles andstrategies, which is so
(45:43):
important, because we justassume, like you say, we've got
our own perception, we've gotour own lens.
We only see what we want to seeor what we've learned to see,
and if we want to have goodrelationships.
They take work.
Yeah, they do.
Cassie (45:59):
Which is why last year I went on this I guess you know
quest, if you like to understandwho I was when I wasn't a carer
, and so there were a whole hostof things that I did, and one
of those was I ended up havingmy own diagnosis, as we said,
early on, and that was tounderstand myself more.
(46:20):
This wasn't about labels orneeding additional help or
whatever.
For me it was oh how do I showup in the world versus how do
other people show up in?
Dana (46:30):
the world.
Cassie (46:32):
And I think for Matthew, when he was diagnosed because
he was diagnosed as autisticwhen he was 16 and whilst he was
frustrated at that time that hedidn't know earlier, that set
him on a path of being able tounderstand himself and whilst he
went through awful challengeswith mental health over an
(46:56):
extended period of time becausehe had that diagnosis, he was
able to work with hispsychologist to really unlock
and understand who he was, howhis brain worked, why anxiety
showed up, what it was servingand how he could build the tools
to get over it.
So or not get over it, but workwith it.
Dana (47:16):
It just gives us another lens.
It gives us another lens.
Cassie (47:19):
And that's the self-awareness that I'm talking
about.
And so, yes, whether it'scounselling or something else,
we don't have to be broken,absolutely not To be able to.
No, in fact, that's probablytoo late.
Yes.
Dana (47:36):
It's more of that proactive.
Cassie (47:37):
You know why don't we when we move into a relationship
or we get married?
Why is that not culturally partof being married is, you know,
monthly or every three months orwhatever.
You sit down with someone andyou work through stuff, so you
strengthen it.
You know it's this prophylacticthing right, it's preventative,
(47:59):
it builds you up, that's right.
Why don't we do that?
Dana (48:06):
That's right.
That's right.
My husband and I are constantlydoing self-help courses and
everything, which is great.
So, Cassie, what has been thehighlight of your life so far of
being your child's parent and abusiness owner?
And Cassie Day.
Cassie (48:26):
Highlight.
You know it's interesting.
You ask that now that they'readults, you have adult children
too.
No.
No, now that they're adults,you have adult children too.
No, because the highlight ishaving the privilege to watch
them grow.
Dana (48:42):
Yes, and that's what people say it's having the heart
to watch them in an adult.
Cassie (48:55):
Yeah, and I think I wish I had the time to be able to
spend with that doctor, to givehim some lessons about, you know
, pre-framing in my brain howMatthew's future would look or
how Josh would look or whateveryou know.
But it's a privilege to be ableto watch our children grow and
to be, and you know, now I getto look at my children and
(49:16):
they're thriving and they'reyoung men, they're young men,
they're thriving.
But that hasn't been withouthard work, right?
It doesn't just happen.
We're not in inverted commas,lucky you know I've done a lot
of hard work with both of thosechildren and on yourself and on
myself, myself, right, but theyhave also witnessed that.
(49:39):
You know, I've kept everythingreally open from that
perspective as well, which hashelped them.
So I've helped myself they seethat and they take that on board
.
Um, so I'm not I can't rememberyour entire question but from a
parenting perspective, is thatI still have a relationship with
my children?
(49:59):
I don't take that for grantedand I'm still protective, and
you know all those things aswell.
Side note, and I don't want tomake it just about Matthew, but
he was very, very, very sick upuntil like two years ago.
This time, two years ago, wewere staring down the barrel of
(50:21):
a very slippery slope.
Um, and you know I've done alot of advocacy in my time for
him to be able to access, uh,different medications that were
perhaps not on the PBS yet, um,successfully.
And um, you know we were aboutto, perhaps not on the PBS yet
successfully, and you know wewere about to put everything on
the line for him to be able toaccess this new medication,
(50:42):
because it was the only thingthat we could think that was
there.
That was, you know, a bit of alifeline for him, quite
literally.
So, a medication calledTrikafta he was granted access
to just shy of two years ago.
And you know this young man whowe thought we might be lucky to
(51:02):
see, you know, a couple of yearsout of, he is so incredibly
well he's gained access to thatwithin a week His whole life
changed.
He went from being sick inhospital on IV antibiotic
treatment all the time, had noenergy, he was lifeless, and now
(51:22):
he is living his best life Intwo weeks time, he's got his
starlight wish and he's going toTasmania to walk the Overland
Track, which is a six-dayself-contained hike through
absolutely unforgiving territory, with Joshua, his mentor, ben,
(51:46):
and his girlfriend, who we neverthought he would have, a
girlfriend or a partner.
Wow, friend so or?
Dana (52:01):
a partner or wow, you know .
Cassie (52:02):
So that moment gifted not only him his life, but
myself, yeah, my husband andjosh as well.
Dana (52:05):
Yeah, beautiful and what a starlight wish.
Cassie (52:09):
Yeah, for everybody and do you know why he wanted that?
Because he likes to challengehimself.
So for a long, long time I'vetalked about fear, and when fear
shows up, we know that'sexactly where we need to be, and
he's a very, very resilientyoung man, and so he's obviously
through his own experiences astough as they have been, they're
(52:32):
what makes him him, and now hecan support other people you
know, who are doing it tough aswell, and so he's going through
this process of doing this walk.
He's in Tasmania at the momentwith his mentor, learning how to
help other people, learningabout outdoor education and
health so that he can helpothers.
(52:53):
Like it's just mind-blowing.
Dana (52:56):
Wow, wow, wow.
What a story, cassie.
I look forward to seeing whatis in store for Cassie Day in
the future.
Hopefully we'll get to workwith each other more.
You've just got amazing energy,amazing passion, amazing
self-awareness that just to givea little bit out to everybody
(53:20):
would make the world better.
So thank you so much for comingon today, and I really look
forward to seeing you around inthe future and looking at where
you head next.
So, and all the best in yourfuture, cassie.
Cassie (53:40):
Thank you.
Thank you for having me.
One of the most exciting thingsis I don't know right now, and
that's okay, that's great, thatis great.
It's a great place to be.
It's been an absolute pleasure.
Thank you so much.
Dana (53:51):
And thank you for all the work that you've done with Carer
Space and I'm sure everybodywould be saying the same thing
and I know, like I said, I havecalled you quite a number of
times.
You've helped a lot of ourfamilies and the families that
you've helped I know are doingincredibly well, and thank you
(54:12):
so much for all your hard work,your passion and your dedication
to other parents and familiesand clients.
Thank you.
Hi, Cassie, welcome to my podcast, the Empowered Parent.
I am so excited to have youhere today.
You are a mother of two boys,one of which has a disability,
and you are a business owner, oran ex-business owner, in
transition to being somethingelse, in transition to being
(00:23):
something else, and you recentlysold your company, the Carer's
Place, that supports so manyparents and clients to live
their best lives, and I knowthat I have often reached out to
you to support our families andrarely, rarely you said no.
So you've helped so manyfamilies and today I wanted to
(00:44):
have your magic touch here onthe show and so you could share
some of your challenges andtriumphs, both as a parent of a
child with special needs andanother child that doesn't have
special needs, and someone whoalso has devoted their well,
(01:06):
their last many, many yearssupporting parents every day to
be their best selves, while yousupported your children and
yourself.
So, Cassie, welcome, and couldyou please start by telling the
listeners a little bit aboutyourself in your own words?
Cassie (01:25):
Thank you, what an introduction.
Thank you, no, it's an absolutepleasure to be here.
Yes, my name is Cassie.
I do have two beautiful boyswho are now adults 20 and 22,
Matthew and Joshua.
Yes, I am an ex-business owner.
I still have my own business,but I'm in that transitional
(01:45):
phase and you know, I was asingle parent for many years of
my beautiful boys and I wouldexplain or describe myself as
being deeply passionate aboutpeople helping people, loving
people supporting people to betheir best selves.
You know very much a believer ofyou know a hand up kind of
(02:10):
mindset.
Yes, everything has been aboutmy children and helping others.
I feel like in my life I havegone through so many tough
things but they're not in vainif I'm able to share those
learnings or those experiencesso others don't have to do it so
tough.
And that's pretty much driveseverything that I do.
(02:33):
Oh it's beautiful that'sbeautiful and so, yes, I've sold
my business just recently, fiveweeks ago, which was a big
process I built my business from.
I guess I was looking forsomething for my son and for
myself in the sphere of NDIS andI couldn't find it.
(02:54):
I couldn't find the quality, Icouldn't find what we were
looking for.
At the same time, I was lookinglike I needed to gain some sort
of employment.
Who's going to want to employme?
I have this baggage.
I need flexibility, all ofthose sorts of things.
I don't have a degree, so noone's going to be interested.
You know all of those sorts ofthings, and so I built this
(03:14):
business out of need for my sonand myself to get the help that
we required after transitioningonto the NDIS.
Dana (03:27):
What was your business, Cassie.
Cassie (03:29):
So my business is the Carer's Place and so essentially
for those who know NDIS, it's asupport coordination.
So we help people understandtheir NDIS plans, use their NDIS
plans, connect with qualityproviders, navigate the NDIS in.
Use their NDIS plans, connectwith quality providers, navigate
the NDIS in times of crisis.
We would support them with allsorts of other community and
(03:52):
government systems and thereason that it was so difficult
was I had no help For the firsttwo years.
Matthew had his NDIS planningtransition from a state-based
service I'll say that loosely toNDIS, and for the first two
years we never used his planbecause I was so overwhelmed and
(04:14):
I kind of thought if I amstruggling to understand this
system, how areeveryone else, particularly
those who are vulnerable, ableto navigate this monster, this
beast of a system.
At the same time, I'd createdan online community on Facebook
(04:36):
just for parents and carers toshare stories, to support each
other, you know, so that theydidn't have to do it as tough.
So, yeah, I built it from uh,my spare room, um, and that was
in uh 2016 17.
Uh started support coordinationin 2018.
(04:58):
Um had a staffing of about 12and sold um not so long ago
because my life changed.
Dana (05:05):
Wow.
So parents who are thinkingabout what should I do with my
life when they have a little bitmore time, if their child goes
to school or if they've gotbetter supports for their child,
they too can, you know, followtheir heart and build a business
from Anyone can, yeah.
Cassie (05:24):
Okay, if you are deeply passionate and moved by
something, anyone can build abusiness.
It is overwhelming, it's notfor the faint of heart.
But if you have a deep drive tomake a difference, to create
positive change, absolutely youcan.
Dana (05:40):
And yours was so successful, Cassie.
Yeah, you had waiting lists andall sorts right yeah.
Cassie (05:48):
Yeah, we really had capacity.
Yeah, which is mind-blowing andI probably haven't taken the
time yet to fully reflect.
Dana (05:55):
Yeah, yeah, well, it's only five weeks, right, not long
.
So, cassie, I guess, as abusiness owner, but also as a
parent of two children, oneneurodivergent what were some of
the most difficult times beinga parent and a business owner
(06:16):
for you?
Cassie (06:18):
Difficult times.
How long have you got?
Let's see.
So I might just explain alittle bit about the boys first
and our situation.
Dana (06:28):
Yeah, that'd be great.
Cassie (06:29):
That'd be great.
So two boys, two young men.
Matthew is 22.
Matthew was born with cysticfibrosis and now we know he was
born.
He's autistic, he also has ADHDand has a number of other
comorbidities that go with that.
So cystic fibrosis is a healthcondition that affects the lungs
(06:51):
and digestive system and isvery serious, and we were told
when he was born that he had alife expectancy of 27.
Wow, I was 24 at the time of 27.
(07:12):
Wow, I was 24 at the time.
And so then Joshua, he is 20.
So there's 21 months betweenthem.
Josh is also actuallyneurodivergent.
He has ADHD as well, and lastyear I found out that I am, and
I'm also autistic.
That's another story.
But early on, I think Joshuawas 18 months old, Matthew was
(07:35):
three when my partner and Iseparated their dad and so
navigating this whole world, youknow on my own as a very young
woman, young mum certainlydifficult.
But being thrust into the realmof the health system was very,
(07:55):
very challenging and I reallydidn't pay much attention to
biology when, I was at school,and so you know having
conversations and having to makedecisions with doctors for your
baby very, very verychallenging, and it became more
(08:17):
and more challenging as Matthewgrew and I had Joshua, and when
Joshua was four weeks old, fourweeks old, four months old I
made the decision to go andstudy naturopathy.
I didn't know anything about thebody, of course, why wouldn't
you?
I wasn't working, but I hadthis deep yearning to be able to
(08:42):
understand the body so that Icould make informed decisions
for Matthew.
So I wasn't railroaded becausesome of the early experiences of
hospital when I was pregnantwith Joshua, I was just being
told you have to do this, youhave to do that for your child.
It didn't feel right.
I could feel it in my bones andin my gut, you know, and I
(09:04):
would sort of try and questionit, but I didn't have the tools
that I needed to be able toadvocate and to articulate what
I was feeling, and you know.
Question Because, just because adoctor says something doesn't
necessarily mean it's right foryour child, and so those times
were particularly difficult, andso I went and learned.
(09:26):
Now you don't have to go and doa course or go and study, but
you can immerse yourself ineducation, um and, and education
can be talking to people, itcan be research on the internet.
Be careful with that.
That comes with a disclaimer be, careful of dr google, but you
can find information whereveryou look.
(09:47):
It doesn't mean you have to takeit all on board, but it helps
you make decisions.
It helps you be able to becurious, to ask questions or to
be empowered and to be empoweredright.
So yeah, navigating systems,government systems is probably
one of the most difficult thingsthat I had.
And then the isolation as aparent.
(10:10):
Right, you feel very, veryalone.
Back then we didn't have socialmedia, we didn't have an
ability to connect to people.
So, as a young mum, when youhave cystic fibrosis, you can't
mix with others because of crossinfection.
So I was very, very isolated.
My family didn't live close by.
(10:32):
They had things going on aswell.
So very, very challenging tonavigate and you constantly
question yourself, constantlyquestion yourself Am I doing the
right thing?
Should I go to hospital?
Shouldn't I go to hospital?
What are they going to think ofme?
You know, am I good enough?
Am I a good enough parent?
The pure fact that you'reasking that, you know, tells you
(10:54):
that you are because you'reshowing up every day and you're
wanting to do better and bebetter.
There's a lot of pressure thatwe put on ourselves as parents.
So you know those werechallenging times.
I think staring you know yourown child's mortality in the
face is pretty tough.
Yeah, that's up there.
(11:15):
And you know it's interestingbecause Matthew was born with
cystic fibrosis.
They put a number on his lifewhich I completely rejected and
you know it was almostcompletely rejected and you know
it was almost like a red flag.
You know that I was actuallygoing to prove them wrong, but
they put this sort of thoughtwell in your mindset.
(11:35):
This is how life's going tolook.
And then, when Matthew was nineyears old, he fell out of a tree
, five meters out of a tree.
He fell out of a tree fivemetres out of a tree and we
nearly lost him.
So he sustained a very serioushead injury, a shatter fracture
through his skull, depressedfracture, broke three vertebrae
(11:57):
in his back.
You know he was a very, very,very sick boy.
But that gives you perspectiveright.
Sick boy, um, but that givesyou perspective right.
And I learned, I think, fromthat.
You know that all the toughtimes and all of the tough that
you go through, there arelessons in there, there is a
light.
There's always like you mightnot realize what that is right
(12:17):
now, but it's preparing you,it's making you stronger.
It's like using your musclesright.
When you exercise, you stressyour muscles, you know, but they
become stronger.
Dana (12:28):
Is that what you think when you're in those challenging
times, Cassie?
Is that what's going throughyour mind?
Yeah, now.
Well, no, at that time, soearly on, no no, how did you get
?
Through it, like what were youthinking?
Cassie (12:43):
to get through it.
I think in those times you'rejust doing the best you bloody
can.
Dana (12:48):
Surviving.
Cassie (12:49):
Surviving.
You're exhausted, you're beyondexhausted, and I don't mean
tired.
I need a sleep, exhausted.
Every part of your being isexhausted and you know you're
just doing the best you can, butthen you've got other things to
consider.
You know you're just doing thebest you can, but then you've
got other things to consider.
You know I was always worriedabout Matthew, but I knew he was
(13:10):
in hospital, he was relativelysafe.
What about Josh?
What's going on for Josh?
It was deeply distressing beingseparated from Josh, and that's
for me as an adult.
Imagine what it's like as alittle person who didn't get to
see their dad.
Very often their mum, theirworld and Matthew are away from
(13:30):
you know.
So, so tough, so quite oftenwhen Matthew was in hospital or
we're going through the tougheststuff, I was almost more
worried about Josh, you know,and trying to juggle that.
And that's where communitycomes in, you know, and being
able to feel okay with askingfor help or accepting help, but
(13:50):
quite often we don't know whathelp we need.
Yes, and so we need someoneelse to actually just step in.
Dana (13:57):
Yes or do that yes?
Cassie (14:00):
I find it really interesting, an interesting
conundrum for both sides, forcommunity and the person who's
going through.
You know, whether you call itdeep trauma or tough times or
what have you is to know when tostep in, when to step back, how
to help, because saying I'mhere if you need just isn't
enough, but you also don't wantto encroach on that person's
(14:22):
space and what have you?
But you know, it's a mindsetthing.
I used to think, oh, I have todo this, this is my
responsibility, I have to dothis on my own.
It's not the case.
And it takes a deep amount ofstrength and courage to accept
and ask for help.
(14:42):
And again, like flexing amuscle, it gets easier and
easier as you go on and do itmore and more.
Dana (14:49):
And I think you saying this, I'm starting to think
about support coordination andhow I've always believed that
support coordination isimportant, intricate, to NDIS,
because there will be peoplethat have done it all by
themselves families and theydon't know what to ask for and
(15:09):
how to ask.
And often the supportcoordinators are like the
negotiators, so they're thebuffer that says it's okay, you
can ask for help, let's just doone little thing, so you're like
the personal coach in gettingsupports.
I see that, but, um, I alsoknow that ndis are changing
around support coordination, so,um, that's going to be a very
(15:32):
interesting um field where youknow, I think that's, uh, I
think.
Then, personally, I think thereneeds to be more support
coordination, um, because I knowthat some people don't
understand or don't know how toask for help.
Like you say, it's all outthere, just look for it.
Cassie (15:52):
Yeah, no worries.
Dana (15:54):
I know, because it's very overwhelming and not everyone,
not every provider is suited tothat family.
Cassie (16:01):
No, absolutely, and I think families are so scared of
doing the wrong thing so they donothing.
Dana (16:07):
You know it's that flight freeze, they freeze, they don't
do anything because they don'twant to do the wrong thing.
Cassie (16:14):
I'm absolutely with you.
I've always said that I thinkanyone new to the NDIS needs
support coordination for atleast a year because a huge
proportion of that role iseducation.
It's capacity building rightand education and helping people
set themselves up, because wesee a lot of people who don't
(16:35):
use their plans.
They don't know what to do theydon't understand.
Dana (16:38):
And burn out and they're exhausted, but I mean that's a
massive gap in the scheme, rightnow and imagine if you had
support coordination back in thedays when you were younger and
you were, you know, togglingbetween Josh, you know, like
that would have been so nice foryou.
Cassie (16:55):
Exactly, and that's one of the things that you know was
a trigger for me to do somethingand do support coordination,
because first two years wedidn't have support coordination
.
Next year we had it and we hadI don't know seven hours or
something, and when we were indeep crisis because I had asked
for support coordination,because I just didn't know what
(17:15):
was going on and someone hadsaid oh, you probably need this,
okay, no worries.
And when we were struggling andtrying to get things happening,
you know that supportcoordinator hopped on Google and
sent me three names ofpsychologists when you know, my
son was in deep crisis.
I thought we've got to be ableto do better than this.
(17:39):
But there are so many qualitysupport coordinators out there
who genuinely make life-changingdifferences for people, and I
know that we did that as well.
It is such an important role.
It will be interesting to seehow the changes that are you
know, I guess, coming we knowchanges are coming are going to
(18:03):
impact that role.
I think some things will beenhanced and some people will
get a lot more help and we'llsee.
Dana (18:12):
We'll see.
Cassie (18:13):
I think there'll be a lot more regulation around it,
and that's a clarity and that'sa good thing for everyone
because it's probably one of themost confusing things about
support coordination or the NDISis knowing whose responsibility
is.
Dana (18:28):
Yes, yes, um.
So, during your challengingtimes because it was like at the
beginning and then you knowthroughout your life, um your
child's life, you know you werein and out of hospitals and
things like that how, how didyou keep yourself resilient, how
did you keep yourself strong,like, what was some of the
(18:49):
strategies that you were usingfor yourself?
Cassie (18:51):
yeah, at movement, so um looking after myself, so
exercise, walking, um talking topeople you know having did you
schedule those times in or werethey no?
And you know, retrospect thethings that are important to you
do need to schedule in, yes,and whether that's a walk or
(19:16):
whether it's, you know, reachingout to someone or listening to
a podcast, or whatever it is,you do need to schedule it
because everything becomes apriority over you as a parent.
It always does so, yes,retrospectively, and even now,
you know, I schedule my exercisetime and quite often I need an
(19:40):
accountability partner.
Yes, right, yes.
So, whether it's a coach orwhatever, I need someone to be
accountable to because I'malways going to put myself last
which is a terrible thing, butit's just what we do.
It's not a conscious thing.
There's always going to besomething else that's more
important.
Dana (19:58):
Definitely there's always going to be something that comes
up Definitely.
And I think if people don'thave people in their lives that
they can work with or they don'thave the funding to get a
personal coach or whatever, Iknow myself I've got like a
Garmin watch or you can get anApple watch or whatever, and
there's challenges in there andthere's such a community out
(20:18):
there that you can connect with.
And I know and I have mentionedon another podcast, my husband
is all about the badges on theGarmin watch, yeah, yeah.
So he's like oh, I need to gofor my walk because I need to
get more steps than X, y, z andyou know, again, it's
accountability to yourself.
Cassie (20:38):
Yeah, exactly, and I think if I you know, this is a
really interesting time to havea conversation about parenting
because it makes me look backwhich we often don't necessarily
do and reflect.
But I am a deeply reflectiveperson and you know, I think
when I went into supportcoordination I had done a couple
(21:02):
of years where I was purelysupporting parents and carers to
look after themselves, becauseI know and knew that when you
look after yourself, then theones that you care for are going
to be so much better off.
And I was proof in that puddingif you like.
And so a lot of the work that wedid when I moved into support
(21:23):
coordination was yes, we findout about the child, and what
have you and what about you wasalways a question at the end of
that time together, talk to meabout you, how are you?
And quite often that was quiteconfronting for people.
They didn't like mums or dads.
(21:44):
They didn't.
No one had ever asked aboutthem before.
Um, and so when we're whetherit's we're working with a person
with a disability or whetherwe're working with a parent and
we're trying to find, you know,some joy and some balance in
their lives, it's, um, I guess,questioning and being curious
about who they are what lightsthem up inside, and if we start
(22:06):
there, then everything else willflow.
So for a parent, you know itmight be, you know, can you
close your eyes?
What did you love when you were?
Dana (22:15):
a young person.
Cassie (22:17):
And what lit you up?
And it might have been music,or it might have been dance, or
it might have been something.
Okay can we introduce just alittle bit of that into your
life?
And it's the same for childrenas well.
And so it doesn't have to behard.
It's just helping that persontap back into and reconnect with
themselves.
And some people just didn'tknow, you know, and that's
(22:40):
really, really sad.
I think self-awareness is soimportant and we're often doing
things, so many things, foreveryone else.
We kind of lose ourselves.
But having an element ofself-awareness is going to, I
think, help you get throughthose tough times.
Definitely you know you can setyourself up and set yourself
(23:03):
some tools and a toolbox, if youlike, of things that you will
need.
When you don't know what youneed, Definitely I go to.
Dana (23:13):
And I think you know self-awareness, self-reflection
a lot of people fear thatbecause it can be very
confronting and people get veryworried that they're going to
find something they don't likeor they feel like they're not
good enough or oh my gosh, howam I going to work with that?
And there are people out therethat can help parents, and
(23:37):
whether it's a mentor,psychologist, coach, social
worker, counsellor, and I alwayssay, you know, if I say that to
parents, they might say, oh,but my friend always, you know,
is there for me.
And you're shaking your head,cassie, I am also shaking my
head.
(23:57):
Can you talk to that for alittle bit?
Cassie (23:59):
Yeah, yeah, look, friends and community are
important.
Look, friends and community areimportant.
But I think they're alwaysgoing to, you know, follow a
particular narrative or whatever.
They're not going to.
They're going to have thoughts,they're going to have judgments
(24:21):
.
They're going to notnecessarily be there for you in
the way that you need.
I think early on I didn't haveany counselling, any coaching
with Matthew, I didn't have anysocial work.
We had nothing and you know, wewere really let down.
I was really let down.
I think.
For the last 10 years I have,I've had coaching, I've engaged
(24:44):
counsellors, I've done immenseamounts of art therapy you know
and I'm not an artist, becauseart therapy is nothing to do
with art, but what it does is ithelps you to be kind to
yourself, to really lean intoself-compassion.
You know we are meaning-makingmachines, right, and we being
(25:06):
humans, right.
So we tell ourselves storiesand quite often, um, they can be
negative stories or inaccurate.
If we're trying to make meaningof something, um, and we don't
have all of the information, uh,and then that becomes our truth
, um, and being able to workwith a coach or with a
counsellor or a social workerthey can actually identify, help
(25:29):
us identify our own bullshitright and disseminate between
what's the truth and you knowwhat are actually stories or
what have you.
Dana (25:41):
And most of the in the training that I've had, in the
coaching training that I've had,in the coaching training that
I've had, it's 95% of ourperception is unconscious.
Yes, so it's about how do youwork with that and you know,
it's things that we just doautomatically.
We don't think about it, andit's about working with a coach
(26:05):
or a mental health professionalto really unleash those.
Art therapy is a right brainthing.
So you are always going intothe unconscious and stuff comes
up that you are not even awareof.
People say, oh, but what ifthis stuff comes up and I don't
know how to deal with it?
The unconscious is going topresent things to you when
you're ready.
Cassie (26:25):
Yeah, that's right it's just amazing it is.
I love this, I love this.
It is, it's um, it's beenliterally life-changing for me,
and I think that's when you knowyou asked before about you know
, um, did I know about learningthe lessons or or what have you?
And I didn't, until I startedworking with someone else.
(26:46):
And so that's what I think youknow working with someone else
helps you build resilience right.
It gives you tools andstrategies to be able to work
with your stuff, but it alsoallows you to let stuff go, to
be kind to yourself, to becompassionate and also to
identify behaviours that mightnot be working for you you know,
and work on new ways of beingthat are less, and I think it's
(27:11):
about finding the right person.
Oh yes.
Dana (27:14):
So you know, I know that people you know will go to a
psychologist once and they go.
No, I didn't like them.
And I'm like, yep, that's fine.
Maybe psychology isn't for you.
Maybe you do need to go tosomething like art therapy.
Maybe you need to do coaching.
Maybe you need, you know,getting a personal trainer.
That's also emotional.
You know, I know a massagetherapist that does a lot of
(27:35):
emotional release work.
So it just depends on what isright for you At that point in
time as well, Exactly exactly,Absolutely 100%.
Cassie (27:45):
I've always said, and always, probably, oh, for the
last 15 years, that, uh, for me,you know, hiking and and
exercise is that little pill forme you know, um, it's just it.
It stops me from having to, um,you know, do life as tough.
(28:05):
It helps me let go of things,but you still need other people,
other professionals, atdifferent points in your life.
You know, last year I usedsomeone different because I was
at a different point in my life.
The previous three years I hadsomeone who was very solid, very
present and helped me, you know, develop myself but also my
(28:26):
resilience in in my work.
And then, before that, I've hadother people and, like you said,
I've had, um, I've had personaltrainers, I've had exercise
physiologists, I've hadcounselors, I've had
psychologists, um, I've workedwith so many different people.
Uh, I used to always say topeople oh, you should see
(28:46):
someone, you should see someoneI never did, and then I did, and
I was like oh yeah, that wasgood advice.
Perhaps I should have takenthat earlier yeah, yeah, yeah,
yeah.
Dana (28:54):
So you know, people say, um, when should I have started?
Oh, years ago.
No, when's the second best timenow?
you know, so start now um, and Ithink there's and again,
getting help for yourself, Iknow is a cultural thing too, so
not every culture sees that asa good thing, you know, because
(29:18):
some cultures are reallyfamily-oriented and it's just
about how we educate people andhow we help people.
And I guess the moreself-reflective parent support
people we have out there, themore we can work with them.
But then we have to know whenwe need to refer to someone
(29:39):
that's a bit more has got moretools than we do.
Cassie (29:43):
I agree, and I think people you know will come up
with reasons why not to do it,and often it'll be I don't have
the time or it's too much money.
But if we don't look afterourselves we will end up in
burnout.
We'll end up very, very, verysick physically.
So it starts off emotionallyand mentally and then it will
(30:05):
manifest into physical and thenyou can't ignore it.
So you're better off to bepreventative and look after
yourself, because it's going topay you back in spades and I've
had to learn that the hard way anumber of times.
So you know it's an investmentin your health.
Dana (30:27):
And so you know it's an investment in your health.
When you've worked with parentsin the past, did you see a lot
of burnout.
Cassie (30:34):
I'm not sure if I ever saw someone who wasn't walking
out the door Right right yeah.
So you didn't see anyone whowasn't exhausted or burnt out
Wasn't exhausted yeah, yeah, andquite often it's the exhaustion
you know there's a myriad ofdifferent ways that exhaustion,
you know plays out.
Exhaustions will come from, butand yes, plays out.
(30:57):
But I saw it more times than Icare to imagine and when you've
been through it, it's very easyto recognise yeah Right.
Yeah, and that was probably oneof the most frustrating things
for me, because I was limited inwhat I could, you know, give,
(31:18):
but also where I could refer,because some of our systems are
a little bit broken, you know.
Dana (31:25):
And it's unfortunate that, say, the NDIS system is about
the child having the problem andwe're putting money in there,
but it's often the carers, Ithink, that really need the
support, because once the carersare supported and feel
resilient and empowered, thenthe child will be okay, you know
(31:47):
that's what I see.
Cassie (31:48):
It's exactly where it needs to start.
It's exactly where it needs tostart and you know, I'm afraid
to say it you know our mentalhealth system, our health system
, even you know carer support.
They just don't meet.
They just don't meet the needand siblings support.
Dana (32:06):
There are not many need and they're not meeting people
where they're at and siblingsupport.
It's non-existent almost.
Cassie (32:15):
There's a few cool programs out there, but you know
, where's the education ondiagnosis or before diagnosis?
Where's the education for thatparent, that family?
Where is the community thatwraps their arms around that
family and empowers them andsupports them.
And educates them so thatthey're going to be okay.
(32:37):
Where is it?
And it's disgusting from myperspective that 22 years ago,
you know we were told Matthewhas CF.
This is how it's going to beand on your way, the same
thing's happening now.
You know a lot of the socialworkers within the hospital
(32:58):
systems don't know any othersupports out there.
They don't connect with youknow whether it's Carers SA or.
You know they don't connectwith you, know whether it's
Carers SA or.
You know we have suchdisjointed systems, which is so,
so sad at this time.
You know in what are we 2024,that we're still facing the same
(33:19):
sorts of things with everythingthat we know these days.
Dana (33:20):
And it's unfortunate that NDIS they talk about they do
talk about, you know, peopleaccessing their Medicare and
everything else.
But how nice would it be ifthey said access Carer's Gateway
.
Yeah, because Carer's Gatewayis for the carers.
Yep, I think that should be anautomatic go to Carer's Gateway.
Absolutely, absolutely.
Cassie (33:44):
Yeah, they're the sorts of things that I'm talking about
, and you know, wouldn't it begreat if we could partner with
those organisations?
So it was seamless you know,that support was seamless For
the whole family, for the wholefamily.
Now I know that there arerecommendations around that in
this NDIS review, but I oftenwonder about those who are
(34:04):
diagnosed with chronic health orwhat have you.
They don't have NDIS.
The supports just aren't therein states.
They're just not becauseeverything went to the NDIS.
You go into a health setting Ifyou've got a child who has, or
if you're a person who has ahealth condition and a
disability, you go into thehealth setting.
(34:26):
That, oh, you've got NDIS goaway.
I'm using my arms ferociously,but I'm pushing.
I'm making a pushing motionbecause that's what happens to
many, many, many people and it'sjust not appropriate.
But yeah, we've got a lot ofwork to do in our society.
(34:47):
However, we've got beautifulcommunities around, but we don't
know where to look, and that'swhere the gap is, I think.
I agree I agree, it's thosereferrals.
Dana (34:59):
What are the things you saw parents most struggling with
in your work with families?
Cassie (35:13):
parents most struggling with in your work with families?
Um, in my work, I think, um,like I said before, not knowing
what to do and not wanting to dothe wrong thing so they don't
do anything.
Dana (35:21):
Yeah, um, accepting help and support and knowing how to
do that you know accepting orinviting people into their homes
whether it's support workers,because that's sometimes hard,
isn't?
Cassie (35:35):
it.
It's outrageously hard becauseyour ego tells you that this is
your responsibility anyway, andit might be your culture or what
have you and then to openyourself up, to have someone
come in and support your personis not only difficult from a
(36:00):
logistical perspective, becausewe've got life going on around,
but, you know, from a heart andemotion, and it's a lot.
Dana (36:11):
Because you're the parent, you're the protector.
Yeah, so you don't want to feellike a failure right, yeah, oh
well, I haven't done the rightthing.
Cassie (36:17):
Someone else has to come in and help, which is not the
case, but they're the sorts ofthings that run through our
minds yeah, why am I not goodenough?
Yeah, why am I not good enough?
Yeah, you know.
And then also you know you haveto then build a relationship
with that person.
You're already exhausted.
You have to build arelationship with that person,
(36:38):
be somewhat vulnerable, directthem.
This is what we want and need.
No, not that way, this way.
So then you have to monitorthem.
It's almost like another jobright so there's that
understanding the NDIS and whatyou can and can't do very, very,
very challenging you know, andthen having to coordinate that
(37:01):
all on top of living a life.
And just because you have asupport coordinator doesn't mean
that necessarily goes away,right?
No, um, and I think, oftenthink, and I said to my team a
lot you know we are here to makethings easier.
If we are becoming part of theproblem, then we're not the
right people Fit.
Dana (37:23):
Yeah, so, so profound, so true, and that's what I say with
our team.
If we're on that problem of thecarousel, you know, it's like
we're all on this carousel, thehorse is going up and down and
everything else, and if we'repart of that, we shouldn't be
there.
No, exactly right we need to bepulling out.
Cassie (37:44):
It takes an ethical and strong service to be able to do
that and sometimes you're sodeep in it you don't actually
realise that you're becomingpart of the problem.
Or creating other problems,which is completely
counterintuitive as to why we'rehere, because we're there to
support people to live life lesshard, to live their best lives,
(38:09):
you know.
Dana (38:11):
Definitely, definitely know, definitely definitely.
Um, what three things could yousuggest to parents who are
listening today to be able tolive their best lives and be the
best parents they can be fortheir children or child?
Cassie (38:30):
what three?
things um, my self-awareness.
You said that was important,yeah, yeah, so one of the, I
guess, learning.
So when I say learning, like Isaid before, I don't mean go out
and you know, go and study orwhat have you, but arm yourself
(38:51):
with with information, gather it, talk to people, find out.
It doesn't mean you need to useall of that information, but
what it's going to do is empoweryou.
It's going to enable you to beable to be able to, you know,
self-advocate, understand what'sgoing on, and that is
exceptionally powerful.
And that is about the condition, your family circumstances,
(39:15):
about whatever it is we neverstop learning as people.
Uh, looking after yourself.
Now we can talk about self-careand everyone oh, I can almost
see the eye rolls yeah, I know Idon't have time, so yeah, it
doesn't have to be aboutpampering yeah this is where
this, this is where theself-awareness comes in right.
(39:37):
Yeah, so you know, from myperspective, self-care is about
knowing yourself well enough toknow what it is that you need
whether it's right now or in thefuture, and arming yourself
with those tools.
So, for instance and I'll use mybusiness as an example, but
I've done this a lot as a parent, you know when I sold my
(39:59):
business, I knew that if I wasto stay at home I would not be
okay.
Emotionally, mentally, I wouldnot be okay.
What I knew was that being innature was deeply therapeutic
for me and that even if I hadwobbly moments, that I would be
okay.
So I, with my husband, set to goout in nature for quite a
(40:25):
number of weeks Now.
I know everyone listening tothis can't necessarily do that,
but a hike, a walk, the beach,sand between your toes, whatever
it is that, for me, was lookingafter myself.
So, it's looking after yourself.
So do you need to blast themusic?
Do you need to just get out andgo and lay down on the grass
(40:45):
outside?
Read something?
A poem, a book?
Do you need to read?
Listen what you know?
Quite often, we just don't giveour permit selves permission to
just be.
We're always doing, doing,doing, doing, doing.
Let's hop off of thatmerry-go-round and give yourself
permission to just be andwhether it's you're on the
lounge or you know you have acup of coffee or whatever it is.
(41:09):
What you need right now is themost important thing.
Dana (41:13):
And like we all have different things okay.
So my husband's thing is we arenature people too, but I know he
just sometimes wants to get onhis computer because he doesn't
have time get on his computerand just internet scroll or
whatever, and I know he's at hiscomputer, I'm not disturbing
(41:36):
him, but then, like when an hour, an hour and a half, two out,
I'm like hello, yeah, you know,because it's easy to um keep
going and it's, and we do needto respect the other people in
the house, but there are thingsthat need to be done as well,
and that's where relationshipsare also really important to
talk to your partner and bereally mindful about what your
(41:58):
partner needs and what you needand let each other know that,
right, that's so important.
Yeah, I think it took me awhile to learn that.
Cassie (42:10):
Yes, absolutely.
I think you know you hit areally important moment there
where you know you asked mebefore what are some of the
toughest stuff?
What are the tough things?
And relationships and thatjudgment and knowing how to
(42:33):
navigate relationships, thosetwo things, a fear of judgment I
think you know you look at thestatistics around relationship
breakdown where there's a personwith a disability in the home
or chronic health like they'rejust shocking.
(42:55):
You know the statistics around amarriage breakdown or a
relationship breakdown.
I still find it difficult tonavigate relationships and not
feel judged.
Or what have you with myparenting?
Or whatever else.
But you know, from myperspective as a mama bear,
(43:16):
you're deeply protective and youdo everything that you think is
right and make all thedecisions for your child in
their best interest, and itmeans that you open yourself up
and expose yourself to judgment.
I was just talking about thisthe other day to someone where
you know they have youngchildren and you're on display,
(43:39):
your parenting is on display andthat can end up.
You know impactingrelationships, whether it's with
your parents or you knowgrandparents, your siblings,
your partner, and how do younavigate that?
How do you navigate throughthat?
Because, you know when, as Isaid earlier to you, I think
(44:03):
Joshua was 18 months and Matthewwas three when my relationship
broke down with their father.
You know, I always felt judgedby other people.
I always struggled to navigaterelationships.
When all of this is also goingon, it's hard enough anyway,
right?
So investing?
(44:23):
So number three, investing inyourself and your relationships
is critical, and if you don't,everything's going to be harder
is critical and if you don't,everything's going to be harder.
Dana (44:36):
And I think the really important thing is I know in my
own relationship, you know we'vegot some boundaries, so no
sarcasm.
That's really important becauseyou know, sarcasm can just lead
you to goodness knows where.
And we've also learned so muchabout our individual differences
(44:58):
, because that's what I'm allabout when I work with the kids,
when I work with the families,so I've put that back into my
family and thinking what are theindividual differences?
What does everybody need?
Processing time, processingspeed.
So I know that I might take forsomething complex, I might take
three hours to process.
My husband takes three days,but I've learned that and the
(45:21):
only way I've learned that isalso by going to a relationship
counselor.
Yep, so it doesn't mean thatwe've got a problem.
We need to go, but one of ussits on the comfy chair, meaning
that we're talking to thecounsellor while the other one
is witnessing and observing, andwe get to know about each
other's processes and styles andstrategies, which is so
(45:43):
important, because we justassume, like you say, we've got
our own perception, we've gotour own lens.
We only see what we want to seeor what we've learned to see,
and if we want to have goodrelationships.
They take work.
Yeah, they do.
Cassie (45:59):
Which is why last year I went on this I guess you know
quest, if you like to understandwho I was when I wasn't a carer
, and so there were a whole hostof things that I did, and one
of those was I ended up havingmy own diagnosis, as we said,
early on, and that was tounderstand myself more.
(46:20):
This wasn't about labels orneeding additional help or
whatever.
For me it was oh how do I showup in the world versus how do
other people show up in?
Dana (46:30):
the world.
Cassie (46:32):
And I think for Matthew, when he was diagnosed because
he was diagnosed as autisticwhen he was 16 and whilst he was
frustrated at that time that hedidn't know earlier, that set
him on a path of being able tounderstand himself and whilst he
went through awful challengeswith mental health over an
(46:56):
extended period of time becausehe had that diagnosis, he was
able to work with hispsychologist to really unlock
and understand who he was, howhis brain worked, why anxiety
showed up, what it was servingand how he could build the tools
to get over it.
So or not get over it, but workwith it.
Dana (47:16):
It just gives us another lens.
It gives us another lens.
Cassie (47:19):
And that's the self-awareness that I'm talking
about.
And so, yes, whether it'scounselling or something else,
we don't have to be broken,absolutely not To be able to.
No, in fact, that's probablytoo late.
Yes.
Dana (47:36):
It's more of that proactive.
Cassie (47:37):
You know why don't we when we move into a relationship
or we get married?
Why is that not culturally partof being married is, you know,
monthly or every three months orwhatever.
You sit down with someone andyou work through stuff, so you
strengthen it.
You know it's this prophylacticthing right, it's preventative,
(47:59):
it builds you up, that's right.
Why don't we do that?
Dana (48:06):
That's right.
That's right.
My husband and I are constantlydoing self-help courses and
everything, which is great.
So, Cassie, what has been thehighlight of your life so far of
being your child's parent and abusiness owner?
And Cassie Day.
Cassie (48:26):
Highlight.
You know it's interesting.
You ask that now that they'readults, you have adult children
too.
No.
No, now that they're adults,you have adult children too.
No, because the highlight ishaving the privilege to watch
them grow.
Dana (48:42):
Yes, and that's what people say it's having the heart
to watch them in an adult.
Cassie (48:55):
Yeah, and I think I wish I had the time to be able to
spend with that doctor, to givehim some lessons about, you know
, pre-framing in my brain howMatthew's future would look or
how Josh would look or whateveryou know.
But it's a privilege to be ableto watch our children grow and
to be, and you know, now I getto look at my children and
(49:16):
they're thriving and they'reyoung men, they're young men,
they're thriving.
But that hasn't been withouthard work, right?
It doesn't just happen.
We're not in inverted commas,lucky you know I've done a lot
of hard work with both of thosechildren and on yourself and on
myself, myself, right, but theyhave also witnessed that.
(49:39):
You know, I've kept everythingreally open from that
perspective as well, which hashelped them.
So I've helped myself they seethat and they take that on board
.
Um, so I'm not I can't rememberyour entire question but from a
parenting perspective, is thatI still have a relationship with
my children?
(49:59):
I don't take that for grantedand I'm still protective, and
you know all those things aswell.
Side note, and I don't want tomake it just about Matthew, but
he was very, very, very sick upuntil like two years ago.
This time, two years ago, wewere staring down the barrel of
(50:21):
a very slippery slope.
Um, and you know I've done alot of advocacy in my time for
him to be able to access, uh,different medications that were
perhaps not on the PBS yet, um,successfully.
And um, you know we were aboutto, perhaps not on the PBS yet
successfully, and you know wewere about to put everything on
the line for him to be able toaccess this new medication,
(50:42):
because it was the only thingthat we could think that was
there.
That was, you know, a bit of alifeline for him, quite
literally.
So, a medication calledTrikafta he was granted access
to just shy of two years ago.
And you know this young man whowe thought we might be lucky to
(51:02):
see, you know, a couple of yearsout of, he is so incredibly
well he's gained access to thatwithin a week His whole life
changed.
He went from being sick inhospital on IV antibiotic
treatment all the time, had noenergy, he was lifeless, and now
(51:22):
he is living his best life Intwo weeks time, he's got his
starlight wish and he's going toTasmania to walk the Overland
Track, which is a six-dayself-contained hike through
absolutely unforgiving territory, with Joshua, his mentor, ben,
(51:46):
and his girlfriend, who we neverthought he would have, a
girlfriend or a partner.
Wow, friend so or?
Dana (52:01):
a partner or wow, you know .
Cassie (52:02):
So that moment gifted not only him his life, but
myself, yeah, my husband andjosh as well.
Dana (52:05):
Yeah, beautiful and what a starlight wish.
Cassie (52:09):
Yeah, for everybody and do you know why he wanted that?
Because he likes to challengehimself.
So for a long, long time I'vetalked about fear, and when fear
shows up, we know that'sexactly where we need to be, and
he's a very, very resilientyoung man, and so he's obviously
through his own experiences astough as they have been, they're
(52:32):
what makes him him, and now hecan support other people you
know, who are doing it tough aswell, and so he's going through
this process of doing this walk.
He's in Tasmania at the momentwith his mentor, learning how to
help other people, learningabout outdoor education and
health so that he can helpothers.
(52:53):
Like it's just mind-blowing.
Dana (52:56):
Wow, wow, wow.
What a story, cassie.
I look forward to seeing whatis in store for Cassie Day in
the future.
Hopefully we'll get to workwith each other more.
You've just got amazing energy,amazing passion, amazing
self-awareness that just to givea little bit out to everybody
(53:20):
would make the world better.
So thank you so much for comingon today, and I really look
forward to seeing you around inthe future and looking at where
you head next.
So, and all the best in yourfuture, cassie.
Cassie (53:40):
Thank you.
Thank you for having me.
One of the most exciting thingsis I don't know right now, and
that's okay, that's great, thatis great.
It's a great place to be.
It's been an absolute pleasure.
Thank you so much.
Dana (53:51):
And thank you for all the work that you've done with Carer
Space and I'm sure everybodywould be saying the same thing
and I know, like I said, I havecalled you quite a number of
times.
You've helped a lot of ourfamilies and the families that
you've helped I know are doingincredibly well, and thank you
(54:12):
so much for all your hard work,your passion and your dedication
to other parents and familiesand clients.
Thank you.
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