Ever watched a child light up at the zoo, then shut down at the hospital and wondered how to bridge those worlds with care, dignity, and actual access? We dive into a week that held both: a quiet bus at Monarto where curiosity bloomed, and a clinical setting where pushing past tolerance backfired. Along the way, we unpack the practical tools that make community life possible for neurodivergent kids, from hydrotherapy wins to the much-debated disability stroller that functions as a lifeline.
We share how unschooling shows up in real time: learning differences between apes and monkeys on the move, noticing the iPad as a regulator rather than a villain, and prepping for transitions when the water slides are closed but the pool is still calling. At home, we’re packing up to rent the house and planning a lap around Australia: tag-teaming weekends, leveraging ADHD hyperfocus, and keeping eyes on a future with more freedom and family time. Our daughter’s school fatigue gets a humane reset with later starts, backed by a supportive teacher and simple, clear communication.
The heart of the conversation is nervous system literacy. One parent often becomes the safe base, the other the action signal. Naming these roles reduces blame and power struggles, and it guides who should lead what-especially during transitions. We also pull back the curtain on NDIS knockbacks that label strollers as “restrictive practice,” how we used a Variety grant to fund a purpose-built disability stroller, and what to do when the first device can’t withstand meltdowns or strength. Think durable gear, sensory shielding, and realistic logistics that keep outings possible.
Medical trauma needs careful handling. We share scripts that protect capacity- sending videos ahead, setting no-engagement boundaries, and calling time when a clinician pushes a child past their limit. The result isn’t perfect compliance; it’s sustainable care and trust for the next visit. If you’re navigating similar terrain-unschooling, access, advocacy, and family alignment-you’ll find strategies you can use today. If the conversation resonates, follow the show, share it with a friend who needs the validation, and leave a review so more families can find these tools.
danabaltutis.com, mytherapyhouse.com.au, https://mytherapyhouse.com.au/your-childs-therapy-journey/ https://www.danabaltutis.com/services
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_00 (00:03):
Hello everyone and welcome to session three of our
unschooling deschoolinginstallation or of our episodes
on the Empowered Parent Podcast.
Welcome, Paige Carter, tosession three.
So you survived last week?
SPEAKER_01 (00:24):
Thank you so much for having me back again.
Yes, we survived.
We're here for another day.
Well, another week, right?
SPEAKER_00 (00:33):
Yes, another week, of course.
Okay.
So how was the week for you andOakland?
Like, how did it feelenergy-wise?
Last week you had a few umlittle uh celebrations when
Oakland wanted to go to schooland went for five minutes.
What happened this week?
SPEAKER_01 (00:55):
Uh, this week has been like a bit up and down.
We've had like again some reallygood moments and some really
hard moments.
It's definitely probably been abit more I was gonna say been a
bit more chill, but then I thinkno, it hasn't really.
He's he's gone back to notplaying his PlayStation as much,
(01:16):
and we spoke about that lastweek.
He's gone back to being on theiPad, kind of just resting.
But we have had a couple of winsas well of really cool things.
So he did go to Minado.
And he went with his dad, didn'the?
He did, he went, yeah, he did.
He went to Minado with myhusband last week, and he was
there for about an hour and ahalf, and he had a really good
(01:37):
time, and yeah, he was tellingme about the animals, and he was
really excited to take photos ofelephants for me because they're
my favorite animal, and he'sseen that the he was he learnt
things.
He was telling me that did Iknow that monkeys weren't no
that sorry that chimpanzees, Ithink is it the chimpanzees
(01:58):
aren't monkeys, they're apes.
Then he was telling me what thedifference between a monkey and
ape is, is that the monkeysdon't have uh no, the apes don't
have tails.
That's all we know, like yeah,it was just really cool, like
you know, the the stuff that heabsorbs and likes to learn.
SPEAKER_00 (02:16):
Uh he has to be sorry, Paige, he has to be in
his just right space, right?
He was relaxed, um he liked witha secure and safe person, dad.
SPEAKER_01 (02:28):
Absolutely, uh that's and it was it was it was
kind of in the middle of thoserainy days.
So they went and they were itwas really quiet.
I think they said there was oneother person on the bus with
them, and yeah, so it was reallynice and quiet, and he could
just be who he is and you knowstruggle when he when he without
people watching him and have areally good time and ask the
(02:51):
questions he wanted to ask andall the things, so yeah, that
was a win.
And then today he had his firsthydro lesson, and I was really
anxious about it, but he reallyloved it, he had a good time.
SPEAKER_00 (03:05):
So tell the listeners that don't know what
is a hydro lesson.
SPEAKER_01 (03:08):
So it's hydrotherapy, so it's done with
a physiotherapist, and it is, Iguess, physio, but in the pool.
In a swimming pool.
Yep, it was very cool.
He loved it.
SPEAKER_00 (03:20):
And he went in, he put his bathers on and and
everything.
SPEAKER_01 (03:24):
Yeah, he did.
I was really anxious, and I gotmy husband to come with me
because I was like, oh mygoodness, like I was just so
scared of how it was going to gobecause we have had some real
rocky times this week withtransitions, but he he did it
and he did really well and heactually really enjoyed himself,
so that was really good.
SPEAKER_00 (03:43):
Fabulous.
That's fabulous.
I mean, things have reallyshifted.
Like, you know, you I think youuse the iPad as a barometer, you
know, if he's gone back to theiPad and he's no longer doing
the PlayStation.
But then let's have a look andsee some of the big things, like
an hour and a half at Monado.
And this was the boy that at thebeginning of term or during the
(04:07):
school holidays didn't want togo anywhere, right?
Yeah.
And today he went to hydro,which is a new thing for him.
And I know quite a few kids thatfind it really hard to even uh
have that transition you knowfrom the temperature because
you've got to, you know, getout, you get in and it's a bit
(04:27):
cold and get out and it's cold.
But obviously, the water is avery big motivator for him.
SPEAKER_01 (04:33):
It is.
Oakland loves the water, and Ibut I was a little bit worried
because he really loves waterslides, he finds them super
regulating and fun and just getsso much joy out of those, but
during the week the water slidesaren't open where we went.
So I was so worried about that.
I was like, oh, he's just gonnawant to go on the water slides,
(04:53):
and he's gonna get upset.
And we did speak about it a lotthough, coming up to today, and
he was okay.
You know, he he did get upsetlike before we went, and like
kind of this week, he wasadamant he wasn't going, and he
was adamant really right upuntil about half an hour before
we went that he wasn't going,and then he just decided that he
was, and and he had a reallygood time, so it was yeah, it
(05:15):
was good.
SPEAKER_00 (05:16):
Oh, that's great, that's great.
And Paige, my question is alwaysto the parents.
So when dad and Oakland went toMonado, what did you do?
Oh, what did I do?
SPEAKER_01 (05:30):
I I had to think then.
Goodness.
Uh I actually had a meeting withmy friend and business coach in
Glenelg.
We were together for I thinkfour hours.
We had a nice lunch, we workedthrough a lot of my business
stuff, which has been reallyhard for me because I've had Oak
all the time.
So she helped me with a lot ofthat and yeah, helped me get
(05:53):
something really excitingtogether that I've been trying
to do for a few months now.
So yeah, it was really good.
Fabulous, fabulous.
SPEAKER_00 (06:00):
And just before we came on air, you were saying
that it's been a prettychallenging week for you because
you're hacking up the house.
Do you want to talk more aboutthat and how is that impacting
you and your whole family?
SPEAKER_01 (06:16):
Yes, so I think we did touch on this last week.
My family and I are travellingAustralia next year, our house
is up for rent now, and we inthe stages of packing up.
So it's been, I think it's justlike there's just so much to do,
and having Oakland around allthe time, I can't get a lot done
(06:37):
during the week.
So there's a lot that we have todo on the weekends, and it's
just it's exhausting on top ofeverything else.
But what's getting me through,and just we're just persisting,
and we're just you know, we'veset ourselves a plan and we've
timelined it all out, is thatthere's a light at the end of
the tunnel.
Next year, we are going to havethe best year of our lives, and
(06:59):
that's it's gonna create so muchfreedom and family time and
peace for us next year that it'slike that light at the end of
the tunnel.
So we just push through becauseit's gonna be worth it.
SPEAKER_00 (07:11):
And right, one step at a time, right?
One day at a time, one step at atime.
Absolutely, yeah.
And when you say uh you are ableto do more on the weekends, is
that because you've got moresupport or what's the reason for
that?
SPEAKER_01 (07:26):
Uh yeah, so we just managed to get more packing and
stuff done on the weekendbecause Sam's home, my husband's
home.
Uh, so we can tag team withOakland.
SPEAKER_00 (07:35):
Okay, great.
SPEAKER_01 (07:36):
Yeah, and then you know, and there might be moments
where he is just happy, youknow, playing his iPad by
himself or playing thePlayStation, and Sam just goes
and helps him when he needs it,where we can actually smash some
things out together as well andget them done quite quickly.
When our ADHD brains togetherget fixated on something and
have a mission, we we can do it.
That's fantastic.
SPEAKER_00 (07:57):
And I love the way that you guys are working as a
team, right?
I love that.
And I've seen your some of yourposts and your photos and on
Instagram and on Facebook, and Ijust love the posts that you
post about your family onInclusive Oak.
And what about your daughter?
How's she going in all this?
SPEAKER_01 (08:15):
Uh, she's she's really good.
She has.
I I noticed last term she was abit tired.
She was not wanting to go toschool, which was a bit unusual
for her because the last coupleof years, when she's had like
this amazing teacher, she's hadhim for two years in a row now.
She'd loved going to school.
Even when we'd gone holiday,she'd now come back because she
(08:36):
wanted to go back to school.
But that yeah, last term she shestruggled a bit, so we've had
lots of conversations aroundthat.
And I think it's you know thecombination of end-of-year
exhaustion and also some anxietyabout big changes that are
coming for us.
So we've been working throughthat with her, and something
that we've done is taking thepressure off of me waking her up
(09:00):
in the morning in time to getready to go to school.
So something we're doing is justletting her wake up naturally
and then just getting ready inher own time and taking her to
school when she's ready.
And that is definitely helping.
She it's much easier to get herto school, she's much more
willing to go, and she's muchless exhausted.
So that's been working reallywell for us.
SPEAKER_00 (09:23):
And how did you organize that with the school?
Like, did you have to talk tothem about it?
Did was it hard to convincethem?
SPEAKER_01 (09:30):
Yeah, uh, so no, our school is really, really good.
We're very lucky.
Obviously, Oakland isn't thereanymore.
However, I honestly don't have abad thing to say about them.
Sorry, I'm just digressingthere, but I don't have a bad
thing to say about them with howthey handled everything with
Oakland, and same with Lacey,that they've always been really
supportive of whatever we need.
(09:51):
So I just approached her teacherand I just said, Hey, you know,
this is what I'm thinking,because obviously we had some
conversations about where shewas at last year, and her
petition her participation atschool had not been the best,
and she he'd noticed that shewas struggling as well.
So I just sent I literally justtold him via dojo what I was
thinking, and he goes, Yep, I'min full support of that.
(10:14):
No worries, thanks for lettingme know.
Like it was just a very easy,like, yeah, no worries.
I've always been very open withthe school about my kids, you
know, always having phone callsand meetings and things and
getting the therapist involved.
And I think they're they're justquite used to me now.
I think they just they just knowthat when I say this is what I'm
doing, that that's what I'mdoing.
(10:34):
Um and they've just they justsupport it.
SPEAKER_00 (10:36):
And and also, Paige, you're you're certain, you know,
and that's what we talked aboutlast week is that you've now
become, you know, you know whenyou've made the decision, it's
the right decision, and you justfollow through with it.
You don't um and uh or sit onthe fence, right?
And if it hasn't been the rightdecision, you know that you can
problem solve it and go back, oryou know, and I think it's
(11:00):
another decision.
SPEAKER_01 (11:01):
I think it's really important to say that God, I've
made the wrong decision moretimes than I can count.
You know, over the years, when Ilook back at it, God, I've made
some mistakes and decisions thatI thought were going to benefit
my kids have been the worstthing ever.
And it's but it and back thenI'd really let myself be down
about it and think I was afailure, and you know, I wasn't
(11:22):
I you know, why did I trust mygut and all of those things?
But as I've grown in thisjourney, I've just I don't know,
like I I've just grown, youknow, like I've just learnt to
really listen to my gut.
I guess back then when I thoughtI was listening to my gut, maybe
I wasn't, and I was lettingoutside influence and not really
(11:43):
following my heart, but now I'mvery in tune to what my gut is
my heart is actually telling meand just following that and not
being worried about oh, whatthis person's gonna think of me
or what are they gonna say?
Like I just do it.
And I don't I've lost the carefactor of whatever anyone else
thinks, which is great, youknow.
SPEAKER_00 (12:02):
Like because I think now you really are, you know,
like that oak tree that you havein your logo, um, you know, it's
about the roots, you know,really as they go deeper and
deeper.
And and what about like Sam andyourself?
Do you guys always support eachother, or are there times and
you're like, no, I think we needto do that, but Sam is has got a
(12:23):
different idea.
How?
Because I've heard a lot offamilies where one parent thinks
A and the other person thinks B,and it's really hard to come to
a decision.
Do you guys have that or are youpretty much on the same page?
Oh no, we have that.
We are just like any othernormal couple.
SPEAKER_01 (12:43):
We uh disagree, especially I kind of in like we
we disagree still now, but Iguess it was definitely a lot
more in the beginning, in thosefirst few years of our kids
being diagnosed, it was harderbecause I would spend so much
time with the therapists andlearn from them, and you know,
(13:05):
my husband would come from adifferent opinion, and because
he hadn't kind of listened tothe therapist and heard from
them and or had the opportunity,right?
SPEAKER_00 (13:13):
He didn't have the opportunity.
SPEAKER_01 (13:14):
Yeah, because he's at work, yeah.
Yeah, so yeah, it wasn't justbecause he just wasn't
listening.
Sorry, I probably worded thatwrong.
SPEAKER_00 (13:20):
Well, no, that's okay.
That's okay, yeah.
SPEAKER_01 (13:22):
But yeah, he uh so it it could be a bit tricky, but
I think over the years, youknow, things that I've wanted to
implement, he's seen thatthey've worked, and he does just
follow my lead a lot with thekid with certain things with the
kids now, and kind of just letsme uh take the reins with that
(13:44):
kind of stuff.
But certainly we do stilldisagree on you know parenting
things.
My husband's definitely harderon them than I am, uh, and is a
bit more of that implementer ofI don't know, consequences isn't
the right word, but you know,just discipline.
(14:08):
Like I don't I don't know whatthe right words are to use, but
just a bit a bit harder on themthan I am, and I think expects
more from them than I do.
So my husband is autistic, ADHD,and also PDA, and I feel that
yeah, sometimes that can make ithard for him to kind of step out
(14:28):
onto the outside and see.
And then you know, sometimesit's the other way around, and
he's adamant on doing something,and I I can't understand it, so
yeah, we still we stilldefinitely struggle with that.
I think I think every marriageor couple partnership, when
(14:49):
you've got neurodivergentchildren, it's hard, right?
Like it's really hard.
Yeah.
SPEAKER_00 (14:54):
And today, you know, I read somewhere and I was
mentoring one of my staffmembers around a mum and dad,
like a mum and dad scenariowhere mum was saying, oh, the
child is always silly with meand running from me, but with
dad, they're not.
And I was reading that mum isthe regulation base, and it
(15:18):
doesn't have to be genderspecific, but one parent is
often the regulation base, andanother uh parent is the
activation signal.
So, you know, where and it'susually mum is usually the
child's safe nervous system,where you know the child can
feel like the tone, the face,the smell, the rhythm, they're
(15:38):
all familiar and they triggerthat regulation.
And then that they lean intomum, and then they can be silly
and then they can say no.
And you know, mum's got to worka little bit harder because mum
is the safe place.
Whereas as soon as dad comes in,dad's often associated with
novelty, activation, doing,especially if the dad's energy
(16:02):
is more matter-of-fact or clear.
And so the brain says, thechild's brain often says, Mum,
your safety regulation, I canplay up a bit, dad, oops, your
action and direction.
And it's almost like aninstinct, you know, like
absolutely, yeah.
And is that what you're findingas well?
SPEAKER_01 (16:20):
Absolutely, and yes, and then you know, and then that
like literally what you'vedescribed there happens in my
household.
And then, you know, especiallymore so kind of previously, not
so much now, because of all thelearning we've done together.
But my husband used to saythings to me, it's because
you're too soft on them, orthings like that.
However, however, now, you know,we understand exactly what
(16:42):
you're saying now, that mum'sthe safe place, often like that.
Yeah.
SPEAKER_00 (16:47):
So and often I think you know, it's really hard when
you've got a safe place and thesafe place gives you an
instruction, you're it it getsvery blurry and you don't go
with that instruction.
Whereas when the doer gives youan instruction, you don't even
think, you just do theinstruction, you know.
(17:08):
And and even if mom has verystrict and you know,
boundary-specific instructions,sometimes it is hard for
children to, especially ifdevelopmentally they're not
ready to move on and be, youknow, self-regulated, they still
need that co-regulation.
Oh, absolutely.
Yeah, okay, for sure, definitelystill needs co-regulate.
(17:31):
100%, 100%.
And so, you know, it's almostlike, you know, when dad or or
the the the you know, activityaction person enters, the
child's already doing something,you know, like because the brain
goes, it's it's almost like atrigger or an anchor that that
(17:52):
person, okay, I I'm not leaningin to have that social and
emotional cushion, but insteadI'm bouncing off and I'm doing
something.
And then when I'm on my cushion,I'm not doing a thing.
I'm just leaning in and I'm justvegging out with mum, you know.
So yeah, I think it's it's sotimely.
I I really believe, Paige, thatyou know, we we are balls of
(18:16):
energy and things happen in ourlives at a different time.
And I was just talking aboutthis at work today, and you
know, here you are telling me,oh yeah, this is this is what
happens in our household too,which I find quite quite
interesting.
SPEAKER_01 (18:32):
Yeah, yeah, it I think it's quite normal, right?
Yes, yes, yeah, absolutely.
I think everywhere, like youknow, in in my community, we we
talk about this sort of stuffoften, and it's just everyone
experiences that.
SPEAKER_00 (18:46):
Yeah, yeah, and it's not someone doing the wrong
thing, right?
It's just no, it's justdifferent feels, yeah.
SPEAKER_01 (18:53):
Yeah, yeah, it's just it's just different
parenting, right?
And just yeah, the way the childfeels.
Yeah, yeah.
SPEAKER_00 (19:00):
I just want to go back a bit, and last week, I
think at the end of our episode,we talked about prams and how to
get prams.
And I know a lot of parents needprams, not because their
children can't walk, but theymay not have the resilience to
walk long distances, or they mayget distracted by things and
(19:23):
they just need a little bit ofsafety, security in the in out
in the community.
But I know there's been a lot ofparents who have been who
they've been rejected by theNDIS to have Prams because it's
like a restrictive practice.
Yes.
Can you talk a little bit aboutthat and your journey about, you
(19:45):
know, I know Oakland has a Pram,is that right?
He does.
SPEAKER_01 (19:49):
He has a purpose-built, yeah,
purpose-built disabilitystroller from Noveta.
SPEAKER_00 (19:54):
Yeah.
SPEAKER_01 (19:55):
We are one of these families that got knocked back
from the NDIS because it was arestrictive practice.
Uh, this was quite a few yearsago now, I want to say like
three or four years ago, wherewe asked for the Prem.
We got well, yeah, we gotknocked back because it was a
restrictive practice, but wealso got knocked back because it
they told us it was parentalresponsibility, uh, which I hate
(20:19):
that term.
God, when they say that to you,you just about want to rip their
eyeballs out.
So yeah, it the the problem wehad is that we already had a
quote for this Pram.
And when they tell me it'sparent responsibility parental
responsibility, but the Pram isseven and a half thousand
dollars.
I have issues with that becauseno parent of a typical child,
(20:44):
well, no average parent of atypical child is paying seven
and a half thousand dollars fora PRA.
SPEAKER_00 (20:51):
Well, it's like a wheelchair, right?
SPEAKER_01 (20:53):
I mean it literally is, yes.
Yeah, yeah, yeah.
So, yeah, I I went for a reviewof the decision.
However, the NDA still wouldn'tfund it.
So that was really difficultbecause I knew that we needed
the PRAM as soon as possible.
And if we didn't get one, it wasgoing to not just limit
(21:14):
Oakland's time in the communitybut completely stop it because
Oakland really struggles to besafe in the community.
He absconds, he has doesn't havestranger awareness, those type
of things.
He really struggles in someenvironments like with overwhelm
and meltdowns and yeah, all ofthat sort of stuff.
(21:34):
So I knew that I had to find away to get it some other way.
And what we did is we went toVariety.
So the Variety Club, right,which is a charity.
Yes, the Variety Foundation,yeah.
Uh and you can apply for grantsthrough them.
You need quotes for what you'reasking for, and you need to kind
(21:56):
of yeah, fill out some forms andstuff, explain why you want it,
how it will benefit you and yourfamily, why you can't fund it,
you know, all of those types ofquestions.
So we did that, and it's a bitof a process, but after I think
it was about a month of puttingour application, we got
(22:17):
approved, and they funded thePRAM.
SPEAKER_00 (22:21):
Uh you've got to do you have to, I think uh you and
I discussed at the end of ourwhen we got off air.
Do you have to go through NDISfirst to show that you were
rejected?
SPEAKER_01 (22:35):
You know, your your uh well, I'm I'm actually not
sure if you have to.
We did, and this is a few yearsago now for us, so uh memory's a
bit sketchy on you know,everything we did, but I would
say, yeah, probably going to theNDIS first is probably more
preferable for the varietyfoundation to show them that
you've tried everything.
(22:55):
But yeah, so we we did thatafter a month, we got it
approved.
They paid for the Pram and wewent through Novita to get his
Pram.
Uh we had to go with our OT andmeet a note OT from Novita there
as well to do like measurements,try them trials and measurements
and all of those sorts of thingsto talk about what would work
(23:17):
for him, what wouldn't.
The OT from Novita showed us afew, and he was really adamant
that one in particular was goingto be best for Oakland.
I had my reservations, but wetook his advice on board and we
went with that one, even thoughI kept advising him.
I kept saying Oakland is reallystrong.
Like I know he's little, buthe's really strong and he rocks
(23:39):
and he you know he hits thingsand he kicks and you know all of
those.
Are you sure this is going to bestrong enough for Oakland?
He's like, Yeah, I've been I'veworked here for you know X
amount of time, I've never hadone of these come back, it'd be
great.
Like, okay, no worries.
So we went with that one.
They did a few things to makethe hood stronger and to make
the footplate stronger so thathe couldn't break those.
(24:03):
And within about six months, wetook it back three times because
he kept breaking it.
And then there was a point wherehe broke it, it was just
unusable.
Uh, so we went back to Novitaand we said, you know, like what
are we going to do here?
Because we're not going to beable to get funds from anywhere
(24:23):
to fund a new one.
And I did tell you how strongOakland was, and thankfully
Novita did take that on board,and they did replace the Pram
with a different one, one of theother ones that they showed us,
and it is much stronger, and westill have it today.
Oh, fabulous! Yeah, so it'sfantastic, and he's not anywhere
(24:44):
near growing out of it, it stillfits him really, really well.
He has just recently, on ourtrip to Queensland, broken the
foot plate during a meltdown,but my husband can fix that.
So it's not it's still notwithout, you know, wear and tear
and without breakages, but it'sit's definitely a lot sturdier
than the one that we wereoriginally given.
(25:05):
But something, and and I guessthis was the main concern from
the OT, and I do understand whyhe gave us the one that he
originally gave us because theone that we've got now is
extremely heavy.
Yeah, um, I think it's about 20kilos.
Wow.
So I can't lift it on my own.
Not because I can't lift 20kilos, but because of the the
(25:25):
pure size of it and then theweight is just too much.
I just can't do it.
It's very uh, you know, and Ihave a big full drive, so trying
to get it up into there, it'sreally difficult.
So I do struggle to be able touse it to take Oakland out on my
own, and that was one of hisstruggles.
He goes, How much is this gonnahelp if you can't use it on your
(25:47):
own?
Uh and definitely that is astruggle that we have.
However, it still enables us togo out as a family with my
husband.
SPEAKER_00 (25:56):
So a need on the market is lightweight, extremely
strong strollers, right?
Yes.
Someone who can engineer that.
And and I guess, like, you know,I call it Pram Stroller, you
know, other people, you know, Iknow people sort of liken it to
a wheelchair, but really it is acommunity access device, right?
(26:19):
It's like a it's like a talkerto some kids who need a voice
output communication device totalk.
This is really important forOakland, not because he can't
walk, but he really can't accessthe community safely without
having that safe container tohold.
SPEAKER_01 (26:38):
And we wouldn't be there's no way, and I mean no
way, we could take Oakland intoa shopping centre without his
Pram.
There's no way that as a familywe could go to something like a
market without his Pram or theZoo, like the normal zoo, not
that Monado's a bit differentbecause you sit on the bus, but
like we can't go to the normalzoo without his Pram.
(27:01):
He he may get out if it's notvery busy at the zoo, but it's
his safe place to come back to.
SPEAKER_00 (27:07):
Yeah, and I've seen it a lot with children, you
know, when they come into theclinic, they some children
initially don't even leave theirpram because they need that that
safe, that safety around, youknow, encompassing, enveloping
their body.
SPEAKER_01 (27:23):
And that's the thing, like it's got a big hood
on it.
So he puts his hood over, heputs his head, you know,
headphones on, and he has hisiPad.
And it's it enables him to blockout the rest of the world, you
know.
And another place that it's justso useful for, and I honestly
don't think that we could go inthere without it, is the Women's
and Children's Hospital.
Oakland does have epilepsy, sowe do have to go there.
(27:47):
However, he's got a lot ofmedical trauma through, you
know, going there because he'shad lots of MRIs and all of
those under general anesthetic.
He's had lots of generalanesthetics for someone his age
and medical procedures andthings like that.
So he's got lots of medicaltrauma, and just getting him in
there is so hard.
(28:07):
So without his PRAM, you justwouldn't get him in there.
SPEAKER_00 (28:11):
Um, and like he's bringing his safety, right?
Because that is the safety fromhome, the safety from outside,
in the inside, it's uh it'ssomething predictable, it's
there all the time, it's hisboundary.
SPEAKER_01 (28:27):
Yeah, and you know, he doesn't have to talk to the
doctors, he doesn't have to evenacknowledge them.
And I'm very specific with them.
I'm like, please just don't talkto him.
Please just don't like don'teven look at him.
If he doesn't want to engagewith you and he's in there, just
leave him alone.
Like I can tell you everythingthat you need to know.
Because if you push, and we havehad we have had some doctors
(28:49):
push.
I was there not so long ago, andshe made him get out because she
wanted to see him do a couple ofthings.
I understand they need to dotheir observations, but I had
videos and stuff to show herthat were recently taken that
she could have accepted, and shemade him get out, she tried to
push him to do things that hedidn't want to do, and well, he
punched her and then pulled herhair.
(29:11):
So fight, flight, uh and I hadto stand in between them, and
she was still going, like, shejust really didn't understand.
She was just adamant to try andthat she would get him to do
what she wanted him to do.
And in the end, I had to belike, enough, you need to stop.
He's not going to do it.
Enough, you're making it like heis too far gone now.
Like, stop.
(29:33):
Like, I have to be, you have tokind of be really quite forceful
with them sometimes.
SPEAKER_00 (29:37):
It's like just stop, and well, but it it evoked PTSD,
right?
SPEAKER_01 (29:42):
Yeah, it's awful, it's awful.
SPEAKER_00 (29:45):
Yeah, yeah.
And I guess the other thing isif someone's listening and
Paige, they might say, Oh, butyou're talking about the child
in front of them, how does thatsit with you and Oakland?
SPEAKER_01 (30:01):
And this is something that I do talk to his
therapists about as well.
Like I I get it, I do get it.
And I try really hard to be verydiplomatic in the way that I
talk about him in front of him.
Um but Oakland would preferthat.
Like in our situation, Oaklanddoesn't want to talk to them.
(30:23):
If he wants to talk to them, hewill.
Like he absolutely will.
But when we go to medicalappointments, it it's a
requirement for him to be in theroom.
So we have to talk about him infront of them.
And he chooses not to engagewith them.
The choice is there for him toengage.
You know, we say, say hello,mate.
Or, you know, like they mightattempt to ask him a question,
(30:45):
but he doesn't want to.
SPEAKER_00 (30:48):
And I guess like in that situation, you could always
say, Okay, Oak, I'm just goingto talk to the doctor now about
what we've been doing.
Yeah, and we do that.
SPEAKER_01 (30:56):
Yes, that's exactly what we do.
Yeah.
And I always, so when we go tothose types of appointments, I
do try to always take somebodywith me so that if there are
things that I don't really wantto talk about in front of him,
then they can take him out oncethe doctor sighted him and just
seen that it's not appropriatefor him to be in the room.
Or something else I do in thosesituations, if I know that I'm
(31:19):
going to be on my own, is sendthem an email beforehand with
the things that I'm notcomfortable talking about in
front of him so that they'reaware of that.
Or if they haven't seen it, I'llsay, Oh, I've sent that to you
in an email.
Can you just read it now?
Yes.
And then when they read it, theygo, Oh, yep, okay, no worries.
SPEAKER_00 (31:36):
Yes, yes, yes, yes.
Or I've said to some families,just take a letter and say, I've
sent you an email, but here itis.
We can't talk about it now, butyou can always write me an email
back.
unknown (31:49):
Yeah, exactly.
SPEAKER_00 (31:50):
Yeah, yeah.
Oh, fantastic, Paige.
I love talking to you becauseyou've always got these gems of
information.
I'm sure the parents listeningwould love to, you know, find
out more about and hear aboutbecause your stories are very
relatable, I'm sure, to manyfamilies.
So just um finishing off today,Paige.
(32:12):
So, what was your biggesthighlight of the week?
SPEAKER_01 (32:17):
Uh personally or like as a family?
Oh, whatever you like.
Okay.
Uh, I might pick one from each.
Uh, I think like like Imentioned before, working with
my business coach last week wasreally helpful for me on a
business sense.
Um, because I've been working onsomething in the background for
a little while now, and it'slaunching this Saturday.
(32:39):
Uh, we'll get it next week.
That was yes, that was reallyexciting to kind of get that
ball rolling because I felt verystuck with having Oakland Home
all the time.
It's been really hard to getwork done.
So that was really exciting andlike felt like a really big win
for me to have like a businesswin.
Uh, and like personally, I Ifeel like seeing Oakland Hydro
(33:05):
today and actually reallyenjoying that was really
beautiful.
SPEAKER_00 (33:08):
That's great.
Well, I am sending you manypositive vibes for the upcoming
week.
And as we go into it's weekfour, isn't it, that we're going
into.
Yep.
Wow.
How quickly is the time flying?
SPEAKER_01 (33:24):
I know, I know it just flies by.
Although I wouldn't mind itbeing the end of December
already, because that's when wetake off on our yeah, I thought
today was tomorrow, if you knowwhat I mean.
SPEAKER_00 (33:34):
Anyway, so thank you so much, Paige, for being on our
on our show because I feel likeit is our show.
And I really look forward tocatching up next week and
delving deeper and talking morewith you.
SPEAKER_01 (33:51):
Awesome, amazing.
Thank you so much for having me,and I can't wait to be back next
week.
SPEAKER_00 (33:56):
Okay, bye, Paige.
Bye.
Bye, thank you.
Hello everyone and welcome to session three of our
unschooling deschoolinginstallation or of our episodes
on the Empowered Parent Podcast.
Welcome, Paige Carter, tosession three.
So you survived last week?
SPEAKER_01 (00:24):
Thank you so much for having me back again.
Yes, we survived.
We're here for another day.
Well, another week, right?
SPEAKER_00 (00:33):
Yes, another week, of course.
Okay.
So how was the week for you andOakland?
Like, how did it feelenergy-wise?
Last week you had a few umlittle uh celebrations when
Oakland wanted to go to schooland went for five minutes.
What happened this week?
SPEAKER_01 (00:55):
Uh, this week has been like a bit up and down.
We've had like again some reallygood moments and some really
hard moments.
It's definitely probably been abit more I was gonna say been a
bit more chill, but then I thinkno, it hasn't really.
He's he's gone back to notplaying his PlayStation as much,
(01:16):
and we spoke about that lastweek.
He's gone back to being on theiPad, kind of just resting.
But we have had a couple of winsas well of really cool things.
So he did go to Minado.
And he went with his dad, didn'the?
He did, he went, yeah, he did.
He went to Minado with myhusband last week, and he was
there for about an hour and ahalf, and he had a really good
(01:37):
time, and yeah, he was tellingme about the animals, and he was
really excited to take photos ofelephants for me because they're
my favorite animal, and he'sseen that the he was he learnt
things.
He was telling me that did Iknow that monkeys weren't no
that sorry that chimpanzees, Ithink is it the chimpanzees
(01:58):
aren't monkeys, they're apes.
Then he was telling me what thedifference between a monkey and
ape is, is that the monkeysdon't have uh no, the apes don't
have tails.
That's all we know, like yeah,it was just really cool, like
you know, the the stuff that heabsorbs and likes to learn.
SPEAKER_00 (02:16):
Uh he has to be sorry, Paige, he has to be in
his just right space, right?
He was relaxed, um he liked witha secure and safe person, dad.
SPEAKER_01 (02:28):
Absolutely, uh that's and it was it was it was
kind of in the middle of thoserainy days.
So they went and they were itwas really quiet.
I think they said there was oneother person on the bus with
them, and yeah, so it was reallynice and quiet, and he could
just be who he is and you knowstruggle when he when he without
people watching him and have areally good time and ask the
(02:51):
questions he wanted to ask andall the things, so yeah, that
was a win.
And then today he had his firsthydro lesson, and I was really
anxious about it, but he reallyloved it, he had a good time.
SPEAKER_00 (03:05):
So tell the listeners that don't know what
is a hydro lesson.
SPEAKER_01 (03:08):
So it's hydrotherapy, so it's done with
a physiotherapist, and it is, Iguess, physio, but in the pool.
In a swimming pool.
Yep, it was very cool.
He loved it.
SPEAKER_00 (03:20):
And he went in, he put his bathers on and and
everything.
SPEAKER_01 (03:24):
Yeah, he did.
I was really anxious, and I gotmy husband to come with me
because I was like, oh mygoodness, like I was just so
scared of how it was going to gobecause we have had some real
rocky times this week withtransitions, but he he did it
and he did really well and heactually really enjoyed himself,
so that was really good.
SPEAKER_00 (03:43):
Fabulous.
That's fabulous.
I mean, things have reallyshifted.
Like, you know, you I think youuse the iPad as a barometer, you
know, if he's gone back to theiPad and he's no longer doing
the PlayStation.
But then let's have a look andsee some of the big things, like
an hour and a half at Monado.
And this was the boy that at thebeginning of term or during the
(04:07):
school holidays didn't want togo anywhere, right?
Yeah.
And today he went to hydro,which is a new thing for him.
And I know quite a few kids thatfind it really hard to even uh
have that transition you knowfrom the temperature because
you've got to, you know, getout, you get in and it's a bit
(04:27):
cold and get out and it's cold.
But obviously, the water is avery big motivator for him.
SPEAKER_01 (04:33):
It is.
Oakland loves the water, and Ibut I was a little bit worried
because he really loves waterslides, he finds them super
regulating and fun and just getsso much joy out of those, but
during the week the water slidesaren't open where we went.
So I was so worried about that.
I was like, oh, he's just gonnawant to go on the water slides,
(04:53):
and he's gonna get upset.
And we did speak about it a lotthough, coming up to today, and
he was okay.
You know, he he did get upsetlike before we went, and like
kind of this week, he wasadamant he wasn't going, and he
was adamant really right upuntil about half an hour before
we went that he wasn't going,and then he just decided that he
was, and and he had a reallygood time, so it was yeah, it
(05:15):
was good.
SPEAKER_00 (05:16):
Oh, that's great, that's great.
And Paige, my question is alwaysto the parents.
So when dad and Oakland went toMonado, what did you do?
Oh, what did I do?
SPEAKER_01 (05:30):
I I had to think then.
Goodness.
Uh I actually had a meeting withmy friend and business coach in
Glenelg.
We were together for I thinkfour hours.
We had a nice lunch, we workedthrough a lot of my business
stuff, which has been reallyhard for me because I've had Oak
all the time.
So she helped me with a lot ofthat and yeah, helped me get
(05:53):
something really excitingtogether that I've been trying
to do for a few months now.
So yeah, it was really good.
Fabulous, fabulous.
SPEAKER_00 (06:00):
And just before we came on air, you were saying
that it's been a prettychallenging week for you because
you're hacking up the house.
Do you want to talk more aboutthat and how is that impacting
you and your whole family?
SPEAKER_01 (06:16):
Yes, so I think we did touch on this last week.
My family and I are travellingAustralia next year, our house
is up for rent now, and we inthe stages of packing up.
So it's been, I think it's justlike there's just so much to do,
and having Oakland around allthe time, I can't get a lot done
(06:37):
during the week.
So there's a lot that we have todo on the weekends, and it's
just it's exhausting on top ofeverything else.
But what's getting me through,and just we're just persisting,
and we're just you know, we'veset ourselves a plan and we've
timelined it all out, is thatthere's a light at the end of
the tunnel.
Next year, we are going to havethe best year of our lives, and
(06:59):
that's it's gonna create so muchfreedom and family time and
peace for us next year that it'slike that light at the end of
the tunnel.
So we just push through becauseit's gonna be worth it.
SPEAKER_00 (07:11):
And right, one step at a time, right?
One day at a time, one step at atime.
Absolutely, yeah.
And when you say uh you are ableto do more on the weekends, is
that because you've got moresupport or what's the reason for
that?
SPEAKER_01 (07:26):
Uh yeah, so we just managed to get more packing and
stuff done on the weekendbecause Sam's home, my husband's
home.
Uh, so we can tag team withOakland.
SPEAKER_00 (07:35):
Okay, great.
SPEAKER_01 (07:36):
Yeah, and then you know, and there might be moments
where he is just happy, youknow, playing his iPad by
himself or playing thePlayStation, and Sam just goes
and helps him when he needs it,where we can actually smash some
things out together as well andget them done quite quickly.
When our ADHD brains togetherget fixated on something and
have a mission, we we can do it.
That's fantastic.
SPEAKER_00 (07:57):
And I love the way that you guys are working as a
team, right?
I love that.
And I've seen your some of yourposts and your photos and on
Instagram and on Facebook, and Ijust love the posts that you
post about your family onInclusive Oak.
And what about your daughter?
How's she going in all this?
SPEAKER_01 (08:15):
Uh, she's she's really good.
She has.
I I noticed last term she was abit tired.
She was not wanting to go toschool, which was a bit unusual
for her because the last coupleof years, when she's had like
this amazing teacher, she's hadhim for two years in a row now.
She'd loved going to school.
Even when we'd gone holiday,she'd now come back because she
(08:36):
wanted to go back to school.
But that yeah, last term she shestruggled a bit, so we've had
lots of conversations aroundthat.
And I think it's you know thecombination of end-of-year
exhaustion and also some anxietyabout big changes that are
coming for us.
So we've been working throughthat with her, and something
that we've done is taking thepressure off of me waking her up
(09:00):
in the morning in time to getready to go to school.
So something we're doing is justletting her wake up naturally
and then just getting ready inher own time and taking her to
school when she's ready.
And that is definitely helping.
She it's much easier to get herto school, she's much more
willing to go, and she's muchless exhausted.
So that's been working reallywell for us.
SPEAKER_00 (09:23):
And how did you organize that with the school?
Like, did you have to talk tothem about it?
Did was it hard to convincethem?
SPEAKER_01 (09:30):
Yeah, uh, so no, our school is really, really good.
We're very lucky.
Obviously, Oakland isn't thereanymore.
However, I honestly don't have abad thing to say about them.
Sorry, I'm just digressingthere, but I don't have a bad
thing to say about them with howthey handled everything with
Oakland, and same with Lacey,that they've always been really
supportive of whatever we need.
(09:51):
So I just approached her teacherand I just said, Hey, you know,
this is what I'm thinking,because obviously we had some
conversations about where shewas at last year, and her
petition her participation atschool had not been the best,
and she he'd noticed that shewas struggling as well.
So I just sent I literally justtold him via dojo what I was
thinking, and he goes, Yep, I'min full support of that.
(10:14):
No worries, thanks for lettingme know.
Like it was just a very easy,like, yeah, no worries.
I've always been very open withthe school about my kids, you
know, always having phone callsand meetings and things and
getting the therapist involved.
And I think they're they're justquite used to me now.
I think they just they just knowthat when I say this is what I'm
doing, that that's what I'mdoing.
(10:34):
Um and they've just they justsupport it.
SPEAKER_00 (10:36):
And and also, Paige, you're you're certain, you know,
and that's what we talked aboutlast week is that you've now
become, you know, you know whenyou've made the decision, it's
the right decision, and you justfollow through with it.
You don't um and uh or sit onthe fence, right?
And if it hasn't been the rightdecision, you know that you can
problem solve it and go back, oryou know, and I think it's
(11:00):
another decision.
SPEAKER_01 (11:01):
I think it's really important to say that God, I've
made the wrong decision moretimes than I can count.
You know, over the years, when Ilook back at it, God, I've made
some mistakes and decisions thatI thought were going to benefit
my kids have been the worstthing ever.
And it's but it and back thenI'd really let myself be down
about it and think I was afailure, and you know, I wasn't
(11:22):
I you know, why did I trust mygut and all of those things?
But as I've grown in thisjourney, I've just I don't know,
like I I've just grown, youknow, like I've just learnt to
really listen to my gut.
I guess back then when I thoughtI was listening to my gut, maybe
I wasn't, and I was lettingoutside influence and not really
(11:43):
following my heart, but now I'mvery in tune to what my gut is
my heart is actually telling meand just following that and not
being worried about oh, whatthis person's gonna think of me
or what are they gonna say?
Like I just do it.
And I don't I've lost the carefactor of whatever anyone else
thinks, which is great, youknow.
SPEAKER_00 (12:02):
Like because I think now you really are, you know,
like that oak tree that you havein your logo, um, you know, it's
about the roots, you know,really as they go deeper and
deeper.
And and what about like Sam andyourself?
Do you guys always support eachother, or are there times and
you're like, no, I think we needto do that, but Sam is has got a
(12:23):
different idea.
How?
Because I've heard a lot offamilies where one parent thinks
A and the other person thinks B,and it's really hard to come to
a decision.
Do you guys have that or are youpretty much on the same page?
Oh no, we have that.
We are just like any othernormal couple.
SPEAKER_01 (12:43):
We uh disagree, especially I kind of in like we
we disagree still now, but Iguess it was definitely a lot
more in the beginning, in thosefirst few years of our kids
being diagnosed, it was harderbecause I would spend so much
time with the therapists andlearn from them, and you know,
(13:05):
my husband would come from adifferent opinion, and because
he hadn't kind of listened tothe therapist and heard from
them and or had the opportunity,right?
SPEAKER_00 (13:13):
He didn't have the opportunity.
SPEAKER_01 (13:14):
Yeah, because he's at work, yeah.
Yeah, so yeah, it wasn't justbecause he just wasn't
listening.
Sorry, I probably worded thatwrong.
SPEAKER_00 (13:20):
Well, no, that's okay.
That's okay, yeah.
SPEAKER_01 (13:22):
But yeah, he uh so it it could be a bit tricky, but
I think over the years, youknow, things that I've wanted to
implement, he's seen thatthey've worked, and he does just
follow my lead a lot with thekid with certain things with the
kids now, and kind of just letsme uh take the reins with that
(13:44):
kind of stuff.
But certainly we do stilldisagree on you know parenting
things.
My husband's definitely harderon them than I am, uh, and is a
bit more of that implementer ofI don't know, consequences isn't
the right word, but you know,just discipline.
(14:08):
Like I don't I don't know whatthe right words are to use, but
just a bit a bit harder on themthan I am, and I think expects
more from them than I do.
So my husband is autistic, ADHD,and also PDA, and I feel that
yeah, sometimes that can make ithard for him to kind of step out
(14:28):
onto the outside and see.
And then you know, sometimesit's the other way around, and
he's adamant on doing something,and I I can't understand it, so
yeah, we still we stilldefinitely struggle with that.
I think I think every marriageor couple partnership, when
(14:49):
you've got neurodivergentchildren, it's hard, right?
Like it's really hard.
Yeah.
SPEAKER_00 (14:54):
And today, you know, I read somewhere and I was
mentoring one of my staffmembers around a mum and dad,
like a mum and dad scenariowhere mum was saying, oh, the
child is always silly with meand running from me, but with
dad, they're not.
And I was reading that mum isthe regulation base, and it
(15:18):
doesn't have to be genderspecific, but one parent is
often the regulation base, andanother uh parent is the
activation signal.
So, you know, where and it'susually mum is usually the
child's safe nervous system,where you know the child can
feel like the tone, the face,the smell, the rhythm, they're
(15:38):
all familiar and they triggerthat regulation.
And then that they lean intomum, and then they can be silly
and then they can say no.
And you know, mum's got to worka little bit harder because mum
is the safe place.
Whereas as soon as dad comes in,dad's often associated with
novelty, activation, doing,especially if the dad's energy
(16:02):
is more matter-of-fact or clear.
And so the brain says, thechild's brain often says, Mum,
your safety regulation, I canplay up a bit, dad, oops, your
action and direction.
And it's almost like aninstinct, you know, like
absolutely, yeah.
And is that what you're findingas well?
SPEAKER_01 (16:20):
Absolutely, and yes, and then you know, and then that
like literally what you'vedescribed there happens in my
household.
And then, you know, especiallymore so kind of previously, not
so much now, because of all thelearning we've done together.
But my husband used to saythings to me, it's because
you're too soft on them, orthings like that.
However, however, now, you know,we understand exactly what
(16:42):
you're saying now, that mum'sthe safe place, often like that.
Yeah.
SPEAKER_00 (16:47):
So and often I think you know, it's really hard when
you've got a safe place and thesafe place gives you an
instruction, you're it it getsvery blurry and you don't go
with that instruction.
Whereas when the doer gives youan instruction, you don't even
think, you just do theinstruction, you know.
(17:08):
And and even if mom has verystrict and you know,
boundary-specific instructions,sometimes it is hard for
children to, especially ifdevelopmentally they're not
ready to move on and be, youknow, self-regulated, they still
need that co-regulation.
Oh, absolutely.
Yeah, okay, for sure, definitelystill needs co-regulate.
(17:31):
100%, 100%.
And so, you know, it's almostlike, you know, when dad or or
the the the you know, activityaction person enters, the
child's already doing something,you know, like because the brain
goes, it's it's almost like atrigger or an anchor that that
(17:52):
person, okay, I I'm not leaningin to have that social and
emotional cushion, but insteadI'm bouncing off and I'm doing
something.
And then when I'm on my cushion,I'm not doing a thing.
I'm just leaning in and I'm justvegging out with mum, you know.
So yeah, I think it's it's sotimely.
I I really believe, Paige, thatyou know, we we are balls of
(18:16):
energy and things happen in ourlives at a different time.
And I was just talking aboutthis at work today, and you
know, here you are telling me,oh yeah, this is this is what
happens in our household too,which I find quite quite
interesting.
SPEAKER_01 (18:32):
Yeah, yeah, it I think it's quite normal, right?
Yes, yes, yeah, absolutely.
I think everywhere, like youknow, in in my community, we we
talk about this sort of stuffoften, and it's just everyone
experiences that.
SPEAKER_00 (18:46):
Yeah, yeah, and it's not someone doing the wrong
thing, right?
It's just no, it's justdifferent feels, yeah.
SPEAKER_01 (18:53):
Yeah, yeah, it's just it's just different
parenting, right?
And just yeah, the way the childfeels.
Yeah, yeah.
SPEAKER_00 (19:00):
I just want to go back a bit, and last week, I
think at the end of our episode,we talked about prams and how to
get prams.
And I know a lot of parents needprams, not because their
children can't walk, but theymay not have the resilience to
walk long distances, or they mayget distracted by things and
(19:23):
they just need a little bit ofsafety, security in the in out
in the community.
But I know there's been a lot ofparents who have been who
they've been rejected by theNDIS to have Prams because it's
like a restrictive practice.
Yes.
Can you talk a little bit aboutthat and your journey about, you
(19:45):
know, I know Oakland has a Pram,is that right?
He does.
SPEAKER_01 (19:49):
He has a purpose-built, yeah,
purpose-built disabilitystroller from Noveta.
SPEAKER_00 (19:54):
Yeah.
SPEAKER_01 (19:55):
We are one of these families that got knocked back
from the NDIS because it was arestrictive practice.
Uh, this was quite a few yearsago now, I want to say like
three or four years ago, wherewe asked for the Prem.
We got well, yeah, we gotknocked back because it was a
restrictive practice, but wealso got knocked back because it
they told us it was parentalresponsibility, uh, which I hate
(20:19):
that term.
God, when they say that to you,you just about want to rip their
eyeballs out.
So yeah, it the the problem wehad is that we already had a
quote for this Pram.
And when they tell me it'sparent responsibility parental
responsibility, but the Pram isseven and a half thousand
dollars.
I have issues with that becauseno parent of a typical child,
(20:44):
well, no average parent of atypical child is paying seven
and a half thousand dollars fora PRA.
SPEAKER_00 (20:51):
Well, it's like a wheelchair, right?
SPEAKER_01 (20:53):
I mean it literally is, yes.
Yeah, yeah, yeah.
So, yeah, I I went for a reviewof the decision.
However, the NDA still wouldn'tfund it.
So that was really difficultbecause I knew that we needed
the PRAM as soon as possible.
And if we didn't get one, it wasgoing to not just limit
(21:14):
Oakland's time in the communitybut completely stop it because
Oakland really struggles to besafe in the community.
He absconds, he has doesn't havestranger awareness, those type
of things.
He really struggles in someenvironments like with overwhelm
and meltdowns and yeah, all ofthat sort of stuff.
(21:34):
So I knew that I had to find away to get it some other way.
And what we did is we went toVariety.
So the Variety Club, right,which is a charity.
Yes, the Variety Foundation,yeah.
Uh and you can apply for grantsthrough them.
You need quotes for what you'reasking for, and you need to kind
(21:56):
of yeah, fill out some forms andstuff, explain why you want it,
how it will benefit you and yourfamily, why you can't fund it,
you know, all of those types ofquestions.
So we did that, and it's a bitof a process, but after I think
it was about a month of puttingour application, we got
(22:17):
approved, and they funded thePRAM.
SPEAKER_00 (22:21):
Uh you've got to do you have to, I think uh you and
I discussed at the end of ourwhen we got off air.
Do you have to go through NDISfirst to show that you were
rejected?
SPEAKER_01 (22:35):
You know, your your uh well, I'm I'm actually not
sure if you have to.
We did, and this is a few yearsago now for us, so uh memory's a
bit sketchy on you know,everything we did, but I would
say, yeah, probably going to theNDIS first is probably more
preferable for the varietyfoundation to show them that
you've tried everything.
(22:55):
But yeah, so we we did thatafter a month, we got it
approved.
They paid for the Pram and wewent through Novita to get his
Pram.
Uh we had to go with our OT andmeet a note OT from Novita there
as well to do like measurements,try them trials and measurements
and all of those sorts of thingsto talk about what would work
(23:17):
for him, what wouldn't.
The OT from Novita showed us afew, and he was really adamant
that one in particular was goingto be best for Oakland.
I had my reservations, but wetook his advice on board and we
went with that one, even thoughI kept advising him.
I kept saying Oakland is reallystrong.
Like I know he's little, buthe's really strong and he rocks
(23:39):
and he you know he hits thingsand he kicks and you know all of
those.
Are you sure this is going to bestrong enough for Oakland?
He's like, Yeah, I've been I'veworked here for you know X
amount of time, I've never hadone of these come back, it'd be
great.
Like, okay, no worries.
So we went with that one.
They did a few things to makethe hood stronger and to make
the footplate stronger so thathe couldn't break those.
(24:03):
And within about six months, wetook it back three times because
he kept breaking it.
And then there was a point wherehe broke it, it was just
unusable.
Uh, so we went back to Novitaand we said, you know, like what
are we going to do here?
Because we're not going to beable to get funds from anywhere
(24:23):
to fund a new one.
And I did tell you how strongOakland was, and thankfully
Novita did take that on board,and they did replace the Pram
with a different one, one of theother ones that they showed us,
and it is much stronger, and westill have it today.
Oh, fabulous! Yeah, so it'sfantastic, and he's not anywhere
(24:44):
near growing out of it, it stillfits him really, really well.
He has just recently, on ourtrip to Queensland, broken the
foot plate during a meltdown,but my husband can fix that.
So it's not it's still notwithout, you know, wear and tear
and without breakages, but it'sit's definitely a lot sturdier
than the one that we wereoriginally given.
(25:05):
But something, and and I guessthis was the main concern from
the OT, and I do understand whyhe gave us the one that he
originally gave us because theone that we've got now is
extremely heavy.
Yeah, um, I think it's about 20kilos.
Wow.
So I can't lift it on my own.
Not because I can't lift 20kilos, but because of the the
(25:25):
pure size of it and then theweight is just too much.
I just can't do it.
It's very uh, you know, and Ihave a big full drive, so trying
to get it up into there, it'sreally difficult.
So I do struggle to be able touse it to take Oakland out on my
own, and that was one of hisstruggles.
He goes, How much is this gonnahelp if you can't use it on your
(25:47):
own?
Uh and definitely that is astruggle that we have.
However, it still enables us togo out as a family with my
husband.
SPEAKER_00 (25:56):
So a need on the market is lightweight, extremely
strong strollers, right?
Yes.
Someone who can engineer that.
And and I guess, like, you know,I call it Pram Stroller, you
know, other people, you know, Iknow people sort of liken it to
a wheelchair, but really it is acommunity access device, right?
(26:19):
It's like a it's like a talkerto some kids who need a voice
output communication device totalk.
This is really important forOakland, not because he can't
walk, but he really can't accessthe community safely without
having that safe container tohold.
SPEAKER_01 (26:38):
And we wouldn't be there's no way, and I mean no
way, we could take Oakland intoa shopping centre without his
Pram.
There's no way that as a familywe could go to something like a
market without his Pram or theZoo, like the normal zoo, not
that Monado's a bit differentbecause you sit on the bus, but
like we can't go to the normalzoo without his Pram.
(27:01):
He he may get out if it's notvery busy at the zoo, but it's
his safe place to come back to.
SPEAKER_00 (27:07):
Yeah, and I've seen it a lot with children, you
know, when they come into theclinic, they some children
initially don't even leave theirpram because they need that that
safe, that safety around, youknow, encompassing, enveloping
their body.
SPEAKER_01 (27:23):
And that's the thing, like it's got a big hood
on it.
So he puts his hood over, heputs his head, you know,
headphones on, and he has hisiPad.
And it's it enables him to blockout the rest of the world, you
know.
And another place that it's justso useful for, and I honestly
don't think that we could go inthere without it, is the Women's
and Children's Hospital.
Oakland does have epilepsy, sowe do have to go there.
(27:47):
However, he's got a lot ofmedical trauma through, you
know, going there because he'shad lots of MRIs and all of
those under general anesthetic.
He's had lots of generalanesthetics for someone his age
and medical procedures andthings like that.
So he's got lots of medicaltrauma, and just getting him in
there is so hard.
(28:07):
So without his PRAM, you justwouldn't get him in there.
SPEAKER_00 (28:11):
Um, and like he's bringing his safety, right?
Because that is the safety fromhome, the safety from outside,
in the inside, it's uh it'ssomething predictable, it's
there all the time, it's hisboundary.
SPEAKER_01 (28:27):
Yeah, and you know, he doesn't have to talk to the
doctors, he doesn't have to evenacknowledge them.
And I'm very specific with them.
I'm like, please just don't talkto him.
Please just don't like don'teven look at him.
If he doesn't want to engagewith you and he's in there, just
leave him alone.
Like I can tell you everythingthat you need to know.
Because if you push, and we havehad we have had some doctors
(28:49):
push.
I was there not so long ago, andshe made him get out because she
wanted to see him do a couple ofthings.
I understand they need to dotheir observations, but I had
videos and stuff to show herthat were recently taken that
she could have accepted, and shemade him get out, she tried to
push him to do things that hedidn't want to do, and well, he
punched her and then pulled herhair.
(29:11):
So fight, flight, uh and I hadto stand in between them, and
she was still going, like, shejust really didn't understand.
She was just adamant to try andthat she would get him to do
what she wanted him to do.
And in the end, I had to belike, enough, you need to stop.
He's not going to do it.
Enough, you're making it like heis too far gone now.
Like, stop.
(29:33):
Like, I have to be, you have tokind of be really quite forceful
with them sometimes.
SPEAKER_00 (29:37):
It's like just stop, and well, but it it evoked PTSD,
right?
SPEAKER_01 (29:42):
Yeah, it's awful, it's awful.
SPEAKER_00 (29:45):
Yeah, yeah.
And I guess the other thing isif someone's listening and
Paige, they might say, Oh, butyou're talking about the child
in front of them, how does thatsit with you and Oakland?
SPEAKER_01 (30:01):
And this is something that I do talk to his
therapists about as well.
Like I I get it, I do get it.
And I try really hard to be verydiplomatic in the way that I
talk about him in front of him.
Um but Oakland would preferthat.
Like in our situation, Oaklanddoesn't want to talk to them.
(30:23):
If he wants to talk to them, hewill.
Like he absolutely will.
But when we go to medicalappointments, it it's a
requirement for him to be in theroom.
So we have to talk about him infront of them.
And he chooses not to engagewith them.
The choice is there for him toengage.
You know, we say, say hello,mate.
Or, you know, like they mightattempt to ask him a question,
(30:45):
but he doesn't want to.
SPEAKER_00 (30:48):
And I guess like in that situation, you could always
say, Okay, Oak, I'm just goingto talk to the doctor now about
what we've been doing.
Yeah, and we do that.
SPEAKER_01 (30:56):
Yes, that's exactly what we do.
Yeah.
And I always, so when we go tothose types of appointments, I
do try to always take somebodywith me so that if there are
things that I don't really wantto talk about in front of him,
then they can take him out oncethe doctor sighted him and just
seen that it's not appropriatefor him to be in the room.
Or something else I do in thosesituations, if I know that I'm
(31:19):
going to be on my own, is sendthem an email beforehand with
the things that I'm notcomfortable talking about in
front of him so that they'reaware of that.
Or if they haven't seen it, I'llsay, Oh, I've sent that to you
in an email.
Can you just read it now?
Yes.
And then when they read it, theygo, Oh, yep, okay, no worries.
SPEAKER_00 (31:36):
Yes, yes, yes, yes.
Or I've said to some families,just take a letter and say, I've
sent you an email, but here itis.
We can't talk about it now, butyou can always write me an email
back.
unknown (31:49):
Yeah, exactly.
SPEAKER_00 (31:50):
Yeah, yeah.
Oh, fantastic, Paige.
I love talking to you becauseyou've always got these gems of
information.
I'm sure the parents listeningwould love to, you know, find
out more about and hear aboutbecause your stories are very
relatable, I'm sure, to manyfamilies.
So just um finishing off today,Paige.
(32:12):
So, what was your biggesthighlight of the week?
SPEAKER_01 (32:17):
Uh personally or like as a family?
Oh, whatever you like.
Okay.
Uh, I might pick one from each.
Uh, I think like like Imentioned before, working with
my business coach last week wasreally helpful for me on a
business sense.
Um, because I've been working onsomething in the background for
a little while now, and it'slaunching this Saturday.
(32:39):
Uh, we'll get it next week.
That was yes, that was reallyexciting to kind of get that
ball rolling because I felt verystuck with having Oakland Home
all the time.
It's been really hard to getwork done.
So that was really exciting andlike felt like a really big win
for me to have like a businesswin.
Uh, and like personally, I Ifeel like seeing Oakland Hydro
(33:05):
today and actually reallyenjoying that was really
beautiful.
SPEAKER_00 (33:08):
That's great.
Well, I am sending you manypositive vibes for the upcoming
week.
And as we go into it's weekfour, isn't it, that we're going
into.
Yep.
Wow.
How quickly is the time flying?
SPEAKER_01 (33:24):
I know, I know it just flies by.
Although I wouldn't mind itbeing the end of December
already, because that's when wetake off on our yeah, I thought
today was tomorrow, if you knowwhat I mean.
SPEAKER_00 (33:34):
Anyway, so thank you so much, Paige, for being on our
on our show because I feel likeit is our show.
And I really look forward tocatching up next week and
delving deeper and talking morewith you.
SPEAKER_01 (33:51):
Awesome, amazing.
Thank you so much for having me,and I can't wait to be back next
week.
SPEAKER_00 (33:56):
Okay, bye, Paige.
Bye.
Bye, thank you.
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