In this week’s episode, Josh is talking to Jillian and Peter Critchley. Jillian was a Finalist in the 2019 Community Achievement Awards for NSW/ACT.
Jillian Critchley has made significant impact on the lives of disabled youth. Both her daughters and husband Peter have Charcot Marie Tooth disease (CMT), a hereditary motor and sensory neuropathy of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body.
Jill has been a committee member of the CMT Association of Australia for 10 years, is the founder of the Charcot Marie Tooth Aussie Kids Program and designed the CMTAK Mentor Program.
Jill helps organise annual conferences where medical and health professionals and people with CMT from rural and regional areas can discuss treatment and support. She was an NSW/ACT finalist in the Australian Family Early Education and Care Awards 2017, Early Childhood Educator of the Year category.
In this episode:
- Jillian spoke candidly about their choice to have a family, knowing that CMT is a hereditary disease and could be passed on to their children
- We got to understand why the Kids Program and the Camps are so important to young people with CMT
- We hear about Jillian’s philosophy to not “cotton wool” kids with a disability
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Welcome to the inspirational australian’s podcast where we chat to people making a difference in their communities and in the lives of others
And here’s your host today. Josh Griffin.
Thank you, Annette that Well for this week’s dose of inspiration,
[00:00:23] Speaker 1
I’m talking to not one inspirational Australian but to be joined by Jillian Jillian Peter Critchley and are very excited to speak with them. And Jillian Jillian a finalist in 2019 as part of the New South Wales Community Achievement Awards. Jillian Jillian a finalist in the Transgrid leadership award, and Jillian Jillian Peter have both been involved in Volunteering and community service for over thirty five years. And have had a real dedication in working with children suffering from Charcot-Marie-Tooth disease over the last 10 years, especially in to find out a bit more about Murray. Truth what that’s about and to hear about the Volunteering and leadership efforts of Jillian. That’s right. Guys straight away this morning. Welcome. How are you doing?
Well, thank you. Morning, Josh.
So you’re joining us from South Sydney into week three hundred and twenty two of lockdown. Is it over there?
we stopped counting at about ten. I think so. Yeah that’s OK. We’ll get out eventually.
So my first question to everybody is you referenced that as CMT Chacko Murray. Tooth disease. Tell us what that is because I had not heard of it before reading a bit about your story.
So even though it’s
book, nothing to do, it’s actually what’s called a peripheral neuropathy. So
in short, it’s a gene malfunction
on our DNA that causes our nerves to deteriorate over time.
And the changes in the nerves in the nerve functioning then affects muscular performance
that results in weakness
and impacts on the
daily living of people with CMT.
That’s generally expressed an inability to do some sports. Some people the very worst affected are in wheelchairs, sensations,
either absent or
delayed. So the reactions of seante people are about one and a
half times slower than the nerve reactions of people. And obviously people that means, you know, you can
touch something that’s burning hot and take a longer time to react to the fact that
that is actually burning.
And that results in an injury. But more commonly, it’s that disability,
that inability to play sport deformities
and those in, in, in society
result, particularly for kids in in bullying and social ostracism. Ostracization. Yeah.
So with the nerves and, you know, Tomate, sports effects, feet and hands the most stuff.
That’s yeah, that’s, that’s the peripheral part of the neuropathy. It’s mainly our hands our feet and, and our legs that are impacted. So I’ve never been able to play any sport whatsoever. I can’t
run more than about a couple of meters. And when I tell you my legs go out
and generally result intripping.
Yeah, so Auris or as my daughter likes to put it Constantly testing gravity.
That is a much more eloquent way of saying it, isn’t it? So paida you suffer from saying to yourself, how did that manifest as a child for you or later in life?
No, it manifested from childhood. I am sorry,CMT
is an inherited disease. There are
several hundred differenttypes
of CMT for the purists.
I inherited a tribe called one I inherited that of my mother. I’ve always known about it. Some people get diagnosed later in life because it’s inherited naturally. You’ve always got it. I’ve always been aware of it. I’ve been involved with, with research into the disease since some since about all I can remember.
Yeah. And so thing is I’d never heard of it Well from there’s a lot of different types of symptoms, something that’s misdiagnosed or not known about
a lot of Them. Yeah. Constantly so growing up I always considered, you know I thought we were the only family with it. I had it, my brother has it, my sister missed out or didn’t get it. And I’ve got cousins with it, my aunt several of my aunties, and none of my uncles had it.
So we, we always felt we’re the only ones with the disease. It was so rare.
But growing up and as people get diagnosed then it we get to know more people with it.
Often it’s mistaken for anything from epilepsy or multiple sclerosis or MDR.
There’s a whole pile of stuff that it’s misdiagnosed as well.
It is the most common that, that little statistic is the most common peripheral neuropathy, you know, across the world
one in two and a half thousand or one in three thousand people with Santé,
and whether it’s been diagnosed correctly or not. But there the stats at the moment, so even though it’s considered rare, it is the most common peripheral neuropathy.
So Jillian, obviously you met Peter and have come to the relationship with that same thing you learned about it. Was your understanding with Peter having knowing so much about it? Did you always know that it was something that kind of developed as you knew each other longer?
OK, so we will out together. We knew each other for six months beforehand, we were involved
in the scouting and guiding
show on the stage the Game Show. And so we’ve been, we’ve
been friends for six months. And after those six months, he asked me out on a date,
and on that first date,
he told me about his disability.
And I actually said to him,
Yeah, and he explained it to me and was very open
and even to the point, I think even on that night, even though that was 30 years ago,
said it is, it is genetically inherited. And that there was the potential for him
to be able to pass that gene down to any of the children that he had.
So I was always very aware of that. I, as I’m sure we’ll
discuss later on an early childhood teacher.
worked with a lot of children with disabilities, have an understanding of, you know, inclusion with with children. So I suppose it didn’t really intimidate me much. And if anything it just tweaked my curiosity.
Peter’s mom had been involved
as has described with his brother as well in a lot
of research. So there was plenty of information for me
when I did first start looking and going
OK, what is this samiti? Obviously when we were first going out, it wasn’t so important that as things got a bit more serious and
we sort of realised that we were going to end up together. That it, it, it
was good to have those honest conversations about that.
You know, even just talking to geneticists later on down the line once we
were married and understanding the implications of passing the gene on.
And yeah, that was good for us to do, but I’ve always
got honesty from Peter and I suppose therefore Ben wanted to always be involved in advocacy and awareness for people with Santé. Yeah,
I guess tell me if this is too hard of a question but when you were having those talks about genetics and having your own children, were you ever in the opposite camp of Oh, maybe we shouldn’t have children?
I would, I would be the one that would answer that we actually did a
program millions of years ago on catalyst’s
about justice and also on insight.
the question is asked if you knew you had any genetically inherited condition,
would you be happy to pass it on?
Happy is not the word we’re looking for.
But an awareness of it is important,
but I have always stated and I believe that it would be the same.
We chose not to test once we had once we were pregnant.
We could have tested
and it would have come back to the result.
But it would have been around 20 weeks gestational by which stage we wouldn’t have
terminated the condition the pregnancy.
So I suppose what I’m saying is we knew what we were InfoSpace.
We would never wish it on your child. But I do also feel in
our family I believe our stronger
and our daughters have adult daughters who
who have it,
better advocates for themselves and stronger for themselves because
they have the disability.
And it’s making Them much more aware of the needs of the whole community rather than being quite insular, I suppose.
So it said no there was never
a view that we wouldn’t have children but we wanted to come in with our eyes open
and, and be aware of the expectations of what was ahead.
Well, my personal view is that every life is beautiful and important. And should be celebrated and, you know, it sounds like you were very well educated, considered, had thought through all the consequences or anything like that. And that’s just a really responsible thing to do.
We came out of the genetic, sorry to
interrupt. We came out of the geneticists appointment
before we were having children, but once we came out of the appointment, and basically the geneticist at Sydney, children’s Hospital said,
you know more than we will ever know about 70 insist
in the best position to make the decision about whether you choose to have children or not. So
I felt like that was our best tick of approval that we were going to do it. And
you know, I always check now because I spend so much time Volunteering for
the santae AustraliaAssociation.
I do wonder what I would do if I wasn’t doing that. So
it’s certain that my life was meaningful and I feel like I can make a difference to people with Santé even without having a
well speaking of making a difference for people with a with CMT. So Jillian and I like to hear more about CMT or the kids program. Can you tell us how it started and what it is? So
it’s still mentioned CMT. Australia is an organisation that was established to support people with CMT. And a lot of the time it was focused on raising awareness
raising research funds, etc.
back in 2011. Joe and I identified an opportunity for
doing better with kids with you know, it’s,
it’s very isolating at
times and particularly for kids in regional and remote areas. It can be very isolating for kids who have a disability like CMT, and don’t know anybody else with it. And how they do that. Know where we’re reading an article from
the CMT organisation in the
United Kingdom. And there was a Lovely lady who had been running camps over there. Her name was Karen,
We reached out to Karen and had a discussion
to think about it. Stop planning,
what we could do for kids and, and what what is involved in running an annual camp for kids so that they can meet their peers. And so that they can
experience the challenges of life
in terms of activities in a safe way. And when I’m inside,
it’s with their peers. You know,
if you think about a disabled person going on a scout camp or a school camp
and being asked to do some adventurous activities, I can’t,
more isolating if they’re doing it with their peers who also have Santé and they can see one that they, that they’ve got support and that they can support others with the same condition then that’s enormously liberating. So that’s sort of the philosophy behind
why we established CMT Aussie kids
and why we run these annual kids.
Yeah, something I hadn’t really considered before because it’s a disability from the sounds of it. You know, I’m just learning about it now, but that is perhaps not prohibitive for someone going on to camp. But as you said, or most of the activities they probably can’t participate in and that would be really isolating. And as you said at the start that leads to bullying. And that’s exactly. It’s a,
it’s a funny position because we’re not sort of in that if you walked past me straight and unless you’re going to be very closely, you
may not think that I have a disability at all. Then you put me in a competitive situation or if I need to climb something, then it comes becomes really obvious that I have a disability. And the same for kids, you know, if they’re suffering fatigue and they’re suffering pain and they and they can’t climb the to wait to climb or to hit a bed or to kick a ball and run a full game of soccer, then that’s very isolating for Them. You know, kids that are bullying Them, you know, it sort of piles up and up. So if we can provide that even once a year camp for these kids
to give Them that little bit of self-respect and that understanding that they’re not alone in this,
this journey that they’re on. As some people don’t like to use the word journey but you know, they,
they’re not aligned in life and we’ve set up social media
they can keep in
contact with Them with Them, with each other between the camps.
the end. That’s the whole, the whole philosophy what we do and why we do it.
And it’s been very good for the kids and we in twenty sixteen we took
and so we had five kids from the UK visit us plus a couple of the adult helpers that they come and join your
camp. I joined our camp and we did spent two weeks together touring around Sydney and then two years later we took
11 kids over to the UK camp in Cumbria. As part of that, we spent about two weeks two to three weeks traveling from London up through Edinburgh. So thought and that was right with the, you know, more than just the kids who went on the Cape. It galvanized the whole community, the whole CMT community. We had people in
CMT, people in
deniliquin who raised thousands and thousands of dollars to help us getaway.
Anomalies like this for the end. But this is such a beautiful story. And you know, I can just imagine how uplifting this would have been for the people involved. If people did want to support these camps and help fundraise, so more people can, can get access. How can they do that?
So the easiest way to do it is to just get on to our CMT Australia website, which is W dot CMT dot org
So I, you and there will be a donate button there.
And this week,
because we’re trying to sort of Constantly do different fundraisers for different things. There is a fundraiser. We go through the kids now platform
that is there for the Santé kids.
Alternatively just email us at
CMT Aussie kids at Gmail dot com. So that’s Aussie as in,
to say many the kids that’s us.
But yeah that’s probably the best way forward
to be able to donate to support some kids because we have kids across Australia in New Zealand attending camp as well.
Cool. So many questions, this is really, really exciting stuff. So what ages are the kids normally that would go on the campus?
So we started off when we were foolish and young. We thought we were going to offer it to every, every school aged child from five to 18 and then
the early childhood teacher in May
kicked in. And we know
we sort of
generally offer it for anything from eight, nine 10 year olds just depending on their maturity
if we had had an end and the number of 18. But now what we have is a group of kids who have been potentially going to camp for 10 years because this is our tenth year
who are now like our older daughter twenty three. Well,
just because you suddenly turn 18 doesn’t
mean that you No longer require support
or, you know, kids contact. So we’ve created a mentor
program within the larger CMT Aussie kids program that
sort of gives these kids a little bit of leadership experience. Trying to give back a little bit to the Aussie kids program, I suppose to future proof it as well. So that we could say that
there could be a number of kids that are involved in the mentor, the
where they can start to,
to take out some of the roles that Peter and I are doing as the older adults within the group. So,
you know, that’s,
that’s sort of part of the plan of the age.
But it really, and this is actually then refers to something else, which
I would like to touch
a lot of the success of the CMT Aussie kids program.
People say to us, Oh wow
you’re so inspirational, Peter, and JillianJillianyou’re doing such a great job.
A lot of it is thanks to the families and the parents
who have trusted their kids with us. We wouldn’t have a camp
without parents who aren’t yet. OK, I mean we do have a story of a child
who is now a young woman is one of our mentors,
lives in in country New South Wales. And she has some tape when she first contacted us. She was about 13 or 14.
She said have been about the camp. I’d really like to go.
But mum and
dad aren’t really keen because I don’t know anybody
yet. We were like, well, duh,
yeah, I bet he knows anybody
was like, I mean you’ve got to sort of baylock about that.
She said, look I’ll talk
to my dad because he’ll be the one I’ve got to get over. OK, that’s
not not no. What’s the answer? And eventually she convinced that, and she said, Oh look, if I get dad to call you can can, you can talk to him. I said, of course, and that’s a lot of my role
within the group
is to talk to parents because
now might sound quite controversial. Here, but some,
not all, some parents of kids with a disability
tend to cotton balls. Them. They wrapped Them up in cotton wool.
They can’t get hurt. They can’t do anything. They’ve got this disability.
So we’re just going to later loss of nothing because we’re worried about being injured or we’re worried about not being able to achieve that. That flies in the face of Sam, tales of kids philosophy. So I do talk to our families about that.
So anyway this story I spoke to this dad,
I had a long conversation with dad. He asked all sorts of questions. I answered Them honestly. And he got off the phone and the young girl rang me straight away back again. And she said, what did you say?
I said why? She said dad’s crying.
And I thought, Oh no, got it wrong
thing. Now what about what if I said that’s really upsetting.
But she said, it’s a good cry because I’m coming to camp dad, let me go. So I suppose a lot of our
advocacy for our kids
is helping our families understand. And I
suppose we’ve got a little bit of cred because we do have two daughters with it.
increases as the years go by I suppose. But
it’s helping our families understand how they can best support theirchild
to, to accept their sanity,
to be able to find strategies to deal with their sanity
and to have a full and meaningful life
with the same type.
And that’s really, that’s one of our main, that’s what I feel
really strongly about within the group.
That’s a beautiful story. JillianJillian thank you for sharing and speaking of cred I mean there’s some serious between you two paida. Obviously you’ve lived experience JillianJillian Your background in early childhood education and I know the two of you have you said at the top scouting experience, camping and working with kids and leadership all rolled into this know camp initiative that you Guys are doing. It’s just makes so much sense and it sounds like a really beautiful thing.
There is no cure for CMT. So we’ve got to make sure that
from, from day one that the kids are prepared for life. And we, and we get a lot of our inspiration from the kids, and they are a great bunch of kids. And despite the fact that they face this difficulty, they just
on on camp they support each other and
in between camps they support each other.
And you know, that’s just so inspirational for, for us as much as you know,
us Providing Them with an opportunity. So
it’s an enormously satisfying thing to do. And for us, you know, like you alluded to it’s bringing together our life experience, whether it’s child’s
early education experience,
our combined scouting experience
and my experience with the disability. So we hope that we were making a difference to the kids
and, and that’s where we get our satisfaction from.
One question I like to ask towards the very end. And again, this is a podcast of bringing the stuff forward, but sometimes I ask, you know, who, who inspires you? And I think you’ve just just told us that you’re inspired by the kids that you’re actually, you’re there to support and, and help.
Yeah, look, they’re a beautiful bunch of kids
and we’re Constantly on the lookout for
other kids to join the camp so that
hopefully we can give Them the same experience.
Same in terms of inspiration, that’s really, that’s really what it is. It’s, it’s, we do it for the kids and we get a lot
back from the kids
when we do it.
Our Good friend in, in the UK
is an inspirational woman as well. She has CMT
and we just had the most amazing friendship with her and through that the CMT kids in the UK and the CMT Aussie kids have the most amazing
crossword experience and support you know. And when you think about it in a strange way,
at opposite ends,
they can ring each other or contact each other,
any twenty four
hours, seven days a week,
to get that support that they may need.
Of the things that we have looked into in the most
recent past was the camp was certainly serving
an essential need. Once covid.
Of course that’s always going to come up in every conversation
has obviously we were very fortunate to fit last year’s
two weeks before Sydney went into lockdown. The first time
we just, we just flew to that. Was that February or March or
something? That’s right. March twenty twenty. Yep.
Whereas this year.
Yeah. It wasn’t a happening thing. It was
just too difficult to be able to arrange it with people coming in from different states and all across Australia.
So that really started us to interact with the kids about OK, well we come to camp.
What else can we do? So some of the things that we have done and are still
doing is like a day trip to Luna park.
So we’ve got for amusement parks across Australia that we were
we had planned to do
it weeks ago.
Now that didn’t happen but also things like
a lot of good old
zoome is our best friend.
And as Peter just alluded to, we can talk to our
friends if we get
the timing right. I know what time it is in London any time of the day and just enabling Them to be able to just touch
base obviously using social media because that is their primary source of communication these days.
But we’re also, we’re looking at, apart from the fact we
were doing a day surfing at manly beach
with Craig withington who was an expert lifesaver.
But his best
friend is this gentleman who
made contact with us. And this
is the other great thing about
the organisation and the programdeveloping.
people now coming to us and going, hey, we’d like to
share our skills and our funds
with your kids. And so this
fellow was, was actually a national swimmer in his day
and he has CMT.
So he’s supporting the program that we have at manly beach. We’ve got another
guy who is the skipper of yachts
through an Association called making waves foundation.
So that’s basically for people who can have disabilities, they can go out and sell on Sydney harbour. So that’s been the other Lovely thing
that we’ve been able to collaborate with. Some of these other
community groups to be able to give our kids
just a day trip now at the moment it’s
not a Sydney based but we are looking at Melbourne and Brisbane as well
depending on what the activity is, of course. But
that whole collaborative community,regional
is it always keeps it fresh because
we’ve always got somebody else who’s there going hey,
we can see what you’re doing.
And we really want to be a part of it. So that’s, that’s
inspiring for us as well.
It sounds incredible but also very time consuming. So is that your paid to kind of organize this or not?
No, not at all. So all members of CMT, Australia, all committee
members and I am a committee member and I have been for 15 years. I the newsletter I am the Facebook moderator, all those types of things is obviously involved from a, from a listening to his wife’s point of view. And then we do
so voluntary. It’s all voluntary, to be honest as well. I don’t want to get paid for it
not what it’sabout
in the UK I’m. They’re the same. Karen doesn’t get paid just I don’t know. It would be different if we got paid.
I know the US
family Association has a bit more funding.
So they’re able to financially support their volunteers a little more than what we can but that’s not sour grapes. That’s just what it is. I think
Volunteering is you need
to not be to not being paid.
I think that’s really important that
And then in this case we just we can just
be guided by Sam to Australia by the organisation that we are under.
Certainly from a funding point of view,
we are always
actively seeking funding opportunities.
That’s has been most recently been able to successfully
grab some funding from the Commonwealth bank.
Ultimately, Ultimately we’re just
looking for donations and the kids do CMT high tea sort of things and sizzles citizens at Bunnings and
things like that just to to keep the word out there and to,
to keep the funding and the funding that is used to support kids coming to camp from different states
and also to subsidise the cost of camp. Yeah.
Privilege to work with these
kids and that’s why we volunteer.
And any funding that we go, one hundred percent
of it goes straight to the kids to get Them on campus, but it’s costly to get
kids from Perth and from remote and regional areas into
Sydney or Melbourne or Brisbane to
to participate. So we’re Constantly on the lookout, make sure that 100 percent of the funding that
we receive through donations goes to the kids.
Would they be an average costs for a kid to attend the camp or is it different because of where they’re coming from?
And coming from the camp itself this year. Well next year will now be
three hundred dollars,
which is quite cheap.
Is very cheap.
Yeah, I mean we try to compare and we look at
the amscot Association also runs camps. There obviously got a totally different disability. They have a much higher adult child ratio.
We sort of don’t need that so we don’t need to fund that as much.
Yeah, so you’d be looking at in most cases because the kids are under 18, you’d be looking at two airfares accommodation for the
parents, or at least the mum or the dad who was coming over
one day that easily for our Perth
And we’ve got at least four, four, five, six families over there,
the ones over
spending upwards of two thousand dollars for the weekend. So we run the camp from the Friday night to the Sunday afternoon. Yeah. And that’s why we try to support. We don’t fully fund,
we can’t afford to fully fund Them,
but we try our best to make it equitable for everybody
and ensure that we can promote and,
give Them money for airfares and
travel expenses related to, to get in.
And the CMT high tea you mentioned before, is that a way that the kids or families or schools or whoever it is can help and fundraise.
So that’s, that was just that actually came from another another kid from South Wales when
he was, when he was raising money he, we took him over
to the U.K.
and he was raising money for it. And he came out
with a little catchphrase to me. He was having a
so it hasn’t been a common
thing. It’s not like this morning take sort of being
the biggest challenges, of course on any volunteer organization is to get people to, to get on board to be able to
promote and organize these things. So we don’t have those types of resources available to us,
but we just encourage
the kids and a lot of cases it’s just
sitting out there. Our youngest daughter stood there in year two and did a little presentation to her primary school. Yeah,
it’s, it’s all just about awareness. As Peter said, we love doing this. It’s not
about the money. Obviously we want to make ourselves sustainable enough so that we can continue to
to our families, to attend camp and to attend,
you know, amusement park
days when covid allows.
But Ultimately, it’s about being there for the kids and helping Them
feeling empowered by their statement and empowering others with their,
with their ability to step
speaking of covid. And before we hit the record button today we were talking about the road map in New South Wales and, and things like that and even the National road map. So is a two thousand twenty two camp on the cards. Yes it is.
A camp is planned here in Sydney in March twenty twenty two will be staying in central Sydney. It’s a bit of a celebration for us because it’s our 10 year camp
and we’ve got
activities like yachting on Sydney harbour. We’ve got manly beach surfing with fellow who has CMT and we going to live in a park. So a really exciting camp planned and we hope to get CMT kids from all over Australia to, to join us for the camp.
Yeah, that’s awesome. That’s very special. 10 years, well done,
we didn’t win and we certainly hope to we would get at least 10 years when we started, but it’s really a great achievement.
So was that really early on You were thinking we can do this from then on.
Yeah well we did. Yeah. Somebody actually asked us, how are you going to make this sustainable when, when we first started, we did, we sat down and we did our business case for the CMT Australia Association to support us in the, in the early days. And we always thought that we would be making this a sustainable long term activity
It wasn’t just a one off camp or a couple of years and we’d let it go. It was about making sure that we give as many kids as possible,
an opportunity to experience Aussie kids and to meet their peers.
And speaking of how many, and I was thinking about that we
would on average have between 25 and 30 kids attend camp every year.
But our database
which sounds very clinical and harsh but I do have an Excel spreadsheet
of the families who’ve
contacted us whether they’ve just been diagnosed with a two month old, or whether they’ve got a 17 year old who they finally had diagnosed.
And there’s over three hundred families on that database. So that
three hundred families across Australia and New Zealand who have a Cleveland
diagnosis of Santé may not have interacted a lot with ask Them another way, came across the line. We’ve had
a total of just under two hundred kids attend camp over the last 10 years.
And I know when we first started and Peter mentioned that when we
did the business ties to the organization,
president at the time Darryl. Obviously we knew we were going to lose money the first couple of years. It’s just what it is,
minimum numbers when you go to visita
sporting wittkamp or something like that you’re always going to lose that.
And I do remember speaking with him a couple of years after that and saying
how fortunate we were to have him actually
stick his neck out and say, hey,
to risk a bit of
the organization’s money for this.
But he does and I suppose it demonstrates where we’re coming from.
That he then commented that
he was always going to support it because he knew that there was the likes of Peter and I.
And now I’m breaking my arm patting myself on my back. I suppose what I’m trying to show is that
we are so passionate about supporting these kids
giving Them a leg up, giving Them a hand. He knew that it was going to be successful. Yes it would take a
few years to break even. And we certainly
did, it took us some time but now
we know that through our funding we have
benefited not just financially
but benefited socially and emotionally for our kids. And I know and I
can say it truthfully that the support that
the organization and the santoso kids program gives, has changed
lives and has actually impacted on
couple of kids who
had thoughts about ending their life.
And we feel honored to have been able to support
those kids at a time when they were at their lowest. And
we’re not trying councillor’s we’re not psychologists, we’re normal human beings one of which has CMT.
And I think that that,
that’s the, all of the kids give each other and that we’re able to facilitate
really can make a difference and has proven to make a difference. And that,
I feel like my work here is done.
You know, what I mean? I mean, I’m still doing it,
but I just feel so happy that we’ve been able to to get ourselves involved insomething
and to volunteer with that in mind. Yeah.
Well that’s interesting point You raise about Mental Health and that must be a really difficult because you know, it is such a sensitive topic. It’s a difficult thing to do. How are you able to, you know, that’s amazing that you are able to help people. I guess you must have to have certain plans in place or things like that to help support people in their Mental Health on these camps and in general.
Yeah, it’s a Mental Health. Always a difficult thing because it does always seem to be a
topic of the mouth without sounding flippant. It does, I, I do feel like that when I’m,
when we’re filling in funding submissions it’s about Mental Health, but particularly so at the moment with locked out and with with the changes in our whole life. Mental Health support has been really important And
I, and I do, I do say here before I even speak about this that we don’t have any training. I mean, I’ve certainly had a little bit of stuff in terms of Mental Health
in early childhood but I’ve not done anything major. And neither of us to try and experts.
The biggest thing with Mental Health is being there is allowing these kids to talk to eachother
and to open up those opportunities. I think we’ve found it.
And I don’t like to be gender
the males in our group maybe because Australians
do a lot of you playing the footy and you’re sporty and everything. It’s more obvious for our male, very young gentleman in the group
that they can’t do that.
And that they feel frustrated and disappointed and,
can’t get to a point where it does end in turmoil. And
we have been, as I say and obviously I won’t speak specifics but we’ve been privileged to be able to support a couple of our of our young kids who have had those
Mental Health down moments
supporting it through just being there, giving Them a call know
Providing a community for Them. Yeah, yeah. A network of support with their peers.
involved and you know they had their other
networks of professional
assistance. But for us it was about just Providing
that contact. Providing that understanding from seeing it from a safety point of view. Yeah.
Well, I think what you’re doing is important because people at the core a lot of the time is they just want to be seen and valued for who they are. And that’s actually what you’re saying, Jillian, a typical male. As a kid growing up from teenager childhood teenage years, you’re right, is sports is the, the biggest, toughest who can kick the ball the furthest who can hit the ball the longest all those things. And so that’s just their sense of value and then being left out of that, and that is really isolating. Peter, you touched on that before. And so a quick plug of a previous episode of our podcast. We interviewed Tara lord who uses animals and animal assisted therapy, but she is qualified, but she said the same as you it’s, it’s about Providing that sense of Community friendship, letting Them know that, that they are valued.
And they’re not alone
sharing that journey and can provide advice and support.
Yes I think you should give yourself more credit about how qualified you are because you’ve been doing it for 10 years
and have the
letters after the name.
Well, I also want to ask you before we, we do wrap up. Volunteering is obviously been a passion of yours for a long time. We touched on scouts a few times. I just kind of want to hear about how you both got involved with scouts and indirectly is has that kind of informed the camp that you’re running now?Yeah,
yes. So I got involved in scouts when I was eight years old,
quite accidentally in a way My and my mother was looking for something that we can
do that because we couldn’t play sport. And she happened to be speaking to one of the local shop assistants who was an
akela done with the local
Cub group. She wasn’t expecting us to stay and I talk about ask
my brother and myself,
but we stuck it out and we found because there was no competition in it.
And we had a group of really good leaders
who gave us opportunities who
took us on
and supported us. So even though we couldn’t walk far or carry heavy packs, they they allowed us to walk without packs and then somebody else had to carry it orwhatever. And we hada
particularly good scout leader
so much so that my brother and I both became queen scouts
in our, in our early teens. And that then developed into Volunteering as a scout leaders. So Cub scout leaders for
for much of our, of virtually all of our adult life and the skills that we learned there. And Jules had a similar journey in guiding and scouting herself and the skills that we learned there. We then transferred across to,
to run the camp. So we knew
second nature for us. When we take kids away you know, what are the safety things we need to think about? What do we need to do it at night and
things to look out for if kids are feeling uncomfortable or scared or whatever,
that became second nature for us. So it was a very powerful
way of making sure that we could
run the camps themselves
quite beyond all of the fundraising and and other stuff that needs to occur outside.
And we also went in camps don’t just happen. We,
we need to, we were going in, eyes wide open about the amount of work that we needed to do to make sure that that was successful.
I think it’s also a point at my my
history is very
similar to that. So I won’t bore you with my guiding and scouting,
and we did meet through scouting.
But I think
the thing about the
camps and how we were able to feel confident, I suppose,
to stand up to Sam to Australia and say well this is what we think is going to work. Because we’ve seen it
work with scouts and guides.
But it’s also a lot of my role in an early childhood with my early childhood hat on,
is speaking to families
and making Them feel comfortable in my early childhood environment.
It’s the same thing with coming back to it now. It’s making families feel reassured
that when they let their child go on camp,
they’re not going to do anything awful and we’re not going to humiliate Them orwhatever.
So our comfortableness, if
there’s such a word
with speaking with families advocating for children,
I feel very strongly about that as an early childhood educator, but advocating for that
including the one I was speaking to who that said no, no, no, no, no, and it
was finally when we got to speak to dad that dad turned it around.
It’s helping Them understand that
this is really important
for the kids to be able to attend. And so the camp was a natural progression
for our families to accept
and to to go with
speaking of your career in early childhood education which is the ongoing, correct me if I’m wrong here. But I believe you also had an award recognized for your professional career too.
Yeah, I’ve surprised myself greatly that I am
a regional finalist in the family day care association’s
early childhood educator of the year. Yeah that’s that sort of comment
on the southern southern Sydney and Sutherland Shire finals. Yeah. Which is
it just goes with my, I mean
that’s obviously a paid profession and I run my own business
from home. I have worked in early education centres, a long daycare centers,
but we worked for it most of my working life. I worked in early childhood so
it is something that I
feel that’s another passion.
Yeah, it’s another thing that I sit in on my,
on my days when I work and I love again I love advocating for children.
I love the relationships that I have with my families and particularly
in a family daycare
since I only have four children a day in care.
So I only have six families plus the
So getting to know Them, nurturing Them, giving Them information about their child’s development. I know, Josh we touched on that
again before we started.
You know, the challenges of parenting have,
have really ramped up in the last couple of years with,
you know what with covid.
But also just giving parents that reassurance that they’re doing the right thing
and making Them feel like we’re a team and that we’re able to collaborate together
for the best of their children. That’s sort of probably where a lot of
my sense of purpose is
like it’s corny again but I do feel like I
do make a difference to my families and my little catchphrases,
but I put the family in family day care. So my children and family daycare, know my family. I know my daughters, my daughters they know
it’s really important
for our families to feel supported by the wider community.
And I’m, I’m a real advocate for that.
Yeah, I’ve heard a lot of really beautiful stories about family daycare. As you said the connections that can be formed and friends of ours have had such a great experience with it to this day. He’s the oldest is ten so he hasn’t been there for a long time but she still keeps in touch and
I still have contact with. So I did, I’ve done it in two different times. I’ve done it just before
we had children,
and then I picked it up about eight years ago again,
while we’re still in contact with two of the kids who I had twenty five years ago.
So that and the families. And I think that’s something that doesn’t have to happen with everybody.
And I say that to my family, as I said don’t be scared off. I’m not a stalker.
if you, if you want and if you need that,
I find that extremely satisfying and, and
look at the end of the day.
It’s beneficial for the children, isn’t it? And that’s what it’s all about. Just the same
with some TLC kids or early childhood.
There’s a theme happening here, you know,
we need to be strong advocates for our children because they always have the kids themselves.
Now for anyone who’s listening and has been very attentive at the start they may have noticed I said that Jillian, you were a finalist in the trans created leadership award and obviously talking to Jillian and Peter here. So I thinking, I wonder why Peter wasn’t in that Well, you know, just touching on that with your career and professional as a professional in childhood education and as well as your Volunteering Jillian with your daughter school as a part of the committee there is that right
Yes, yeah just pay and say and, and the usuals and I tend to be and
back on this, anything that I join I tend to end up
doing something on the committee
at the president or the vice president, or I want to to the treasurer that spoke to me
about money, but you know,
I suppose it’s all just part of supporting
a team of people who were there.
I’ve just always been like that. Like, it’s just how life is you. You need to get back. You need to support
the same with
scouting and God gave us so much as kids and as
And so now we can give back and we do that through the Game Show and, and various other things.
We need to get more volunteers. We need to get more people to volunteer because it makes a community a better community.
Exactly. Couldn’t have said it any better than myself. We need these volunteers are the backbone of communities. So and you said it earlier, yourself not being paid is what makes Volunteering. So special because there’s no vested interest, it’s people doing it out of a passion, they’re just getting paid. So I think that’s as you said that’s what makes it so special.
So remind everyone one more time where they can connect with CMT Australia, if they want, even just to follow along. On the social media, maybe they want to make a donation. Where can they do that?
So social media, we certainly have Facebook and Instagram for both CMT Australia and that’s what they called. And also say about Aussie kids is on Instagram.
We do have a Facebook page for our Aussie kids for the exposed page for obvious reasons.
And it’s only open to children
and all their family members who were there to support Them. So that wouldn’t be something that we would let you in to but that’s okay.
But checking out the
CMT, Australia website, S.A. All right,you
or emailing us at, say annotators, kids at Gmail dot com. Also, you get onto the website again, you can
have a look and see if you
want to consider a donation
either to the organization or to the kids
or just email me
at the CMT Aussie kids at Gitmo dot com. And that would be able to give you all of those details.
Perfect. Well, thank you both Jillian Jillian for your time this morning. I really appreciate it And for sharing some of your story for raising awareness for CMT. Obviously I’ve learnt a lot about it in this last hour and yeah, just wanting to wish you all the best for the two thousand twenty three camp. And I can’t wait to see all the updates on social media and see how it’s going.
Thank you so much, much appreciate the support and love I’m on your social media as well. So certainly when this podcast is, is up in Nevada it will be well distributed amongst Santé pages.
That sounds great and you know if there are some young mentors of your camps, of other young people with CMT, let’s share their story about nominating Them in the young achiever awards, which is open now. So people can do that at young achiever awards dot com. Lovely. All right Guys thank you so much
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