Hi, my name is Jordan. I am a special education
teacher from the UK. I share my passion for everything
communication, sensory regulation and fun lesson
ideas for my classroom of disabled pupils aged
4 to 11. Each week I am joined by experts in
the field answering your questions and sharing
our knowledge and experience working alongside
our beautiful young people. Let's get started.
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today. Now to the episode. Hello everybody and
welcome to the Sensory Classroom podcast. My
name is Jordan and today I am joined by Alicia
from Regulation Nation. Alicia is a mother of
two gorgeous neurodivergent children and one
who is a PDA -er and is autistic herself. She
knows firsthand the challenges and joys of experiencing
this world differently and the adjustments and
changes that need to be made to see everyone
thrive. And I am so excited to talk to her about
regulation in the home today. Hello, Elise. Hi,
Jordan. Thanks so much for having me today. I'm
very excited to be here. I am. honored that you
have made your set your evening aside to record
this podcast today because you're in australia
aren't you i am and i had to check with you whether
i had the time right that was my biggest concern
so i'm glad i'm here and we're getting it all
coming together you have absolutely smashed that
because it is not easy to work out um let's talk
family set up I suppose because that kind of
that's the reason I wanted you on this podcast
because not only do you understand this stuff
from a professional point of view but you understand
this firsthand in your home so yeah what does
your family and home life look like yeah at the
moment I have My kids are here seven nights in
a row and then they go to their dad's house.
So it's probably a bit different to lots of other
families and that's quite new for us. It used
to be shorter stops and starts and it's only
this year that we've moved to that. So I have
a beautiful just turned 11 year old and that's
my Petey Heyer. I would describe him as someone
who is always looking to be helpful. He's very
big hearted. He picked up my wit and he's very
quick witted. Sometimes it's dad jokes and sometimes
it's insults, but they are just so good that
you can't help laughing. And he is just a born
leader. Like, yeah, I have no doubt he could
argue his way through anything and also just,
yeah, so, so great. My youngest is just about
to turn. eight and um he is a soccer fanatic
he he's like the energizer bunny just keeps going
going going until he's really tired and just
stops and he used to be the one that we like
be where is he and he'd be hiding in like a wardrobe
cupboard reading a book but we're calling out
hey where are you and he's just not saying anything
and we're all like oh my god he'd be the one
climbing runs on the drawers of the kitchen to
get up to get the biscuits just no fear this
kid like I remember those toddler days so well
and I'm really impressed that we've kept him
alive till he's eight he's mellowed a bit now
yeah so but yeah they're both just big -hearted
fun loving little criminals and I just love them
to bits and they've certainly taught me a whole
lot about regulation But authenticity, compassion,
patience, and I think how to survive on very
little sleep, which I don't do that well. But
I think, yeah, lots of things have changed since
they were little. And I think I've learned tools
and strategies for my own regulation. Yeah, they
also made me a mum, which is one of the most
precious gifts you can get. So I feel really
incredibly grateful and lucky that I'm their
mum. I love that the first thing you said to
describe your PDA -er is big -hearted because
I totally see that and I don't think it's spoken
about enough. They are so desperate to please
and be loved and validated and I don't hear that
enough. And often it is seen as demand avoidant,
controlling, stubborn, all those kind of words.
And honestly, I love that you started with big
hearted because it is so true. All they want
is validation and to be loved and respected and
heard. Can we talk about that? Yeah. So my oldest,
he's called Edward, but we call him Ned. And
before we knew about PDA, we used to say that
Ned stood for not easily deterred. So that was
a way, I guess, of understanding him and what
he needed before we knew PDA was a thing. I think
the other thing that I noticed, particularly
working with these kids, and my caseload is 80
% PDAers here in Melbourne. and their beautiful
families is that a lot of them really think that
they are bad kids because they've had so many
experiences where they are considered exactly
as you said stubborn you know they defy the rules
they don't care about anybody but that's not
true at all they're really looking for a way
to minimize their anxiety to feel safe to feel
secure to have co -regulation it's so big that
drive for co -regulation because of that nervous
system disabilities. Yeah, I haven't met a PDA
that isn't trying to be helpful in some way.
And I haven't met a PDA that isn't incredibly
funny, creative and yeah, really warm and big
hearted. I do have one little participant that
I work with who every session finds a way to
kill me within the play and it's very creative
and fun. Yeah, I also have this other participant
that I work with and I remember this session
really well and we'd had this little win where
it had taken about six months for me to have
an idea within the play and I did that thing
that therapists do where we get excited and we're
like, oh. yes go for more and then she clearly
said this she was five at the time and she said
let's not get ahead of ourselves and it was such
great feedback and they're so honest and you're
just like you know what you're right this we
can celebrate just this like this is it's enough
and sometimes we we need to check what the goalposts
are and not keep shifting them all the time for
these kids and really celebrate that you know
they're winning in so many different ways all
the time but Again, I think when you work with
therapists, it's always like, okay, what's the
next goal? What's the next goal? And we don't
often sit enough to celebrate those wins. Yeah.
It's so beautiful. So you said 80 % of your participants
are PDAers. How does you working as a professional
you in your business supporting families with
PDA differ from being mom? Because you're probably
seeing similar things, but I can imagine it's
a very different role. How do you navigate that?
Well, I think that my experience, both, sorry,
my cat's coming in, both as a parent and someone
who works with PDAs is that the number one thing
parents really need to be is believed and understood
and heard because so much of what happens with
a PDA A lot of people, they just don't understand.
They don't understand, you know, real PDA burnout
and what that looks like. They don't understand
because it's not just affecting that child. It
affects everyone in the family to varying degrees.
Yeah, I think having someone to be able to hear
you and validate that experience and be able
to say, yeah you are doing everything that you
can at this point in time but here's where I
can help you with some different things maybe
you haven't thought about so and sometimes I
think you know I have parents that come from
all different walks of life sometimes we also
I know for myself that someone would give me
permission I'm autistic so I sometimes have quite
a rule -driven brain quite a concrete brain and
someone would give me permission or I'd see someone
else doing it differently I'm like I can do that
so much more playfully. I can let go of all these
things that I think should be teachable moments
that can just actually be genuine connection
and authentic connection and child -led connection.
I do not need to have an agenda. Yes, I have
goals and they're way back in my brain somewhere,
but if I genuinely walk into that space and my
only goal is to be present and to witness this
child. and to create a space where they feel
safe, then they're not doing that thing where
they're hypervigilant and picking up on an agenda
because there is none. The agenda is just I'm
witnessing you. I'm present to what you're going
through. And, yeah, I have strategies and tools
where I'm modelling what I – I think I make it
more about me rather than them because I feel
like that's the pressure. So let's say something's
– come out through the play where I would naturally
react anxious then that's I'm saying oh I'm feeling
a bit worried about this what do I do like just
so we're working on problem solving and but I'm
not saying okay let's take three deep breaths
because that's going to help us now let's practice
because it's far too direct and they need to
be able to that's the other thing that these
kids They show you. They show you with their
bodies what they're gravitating to, how much
intensity they need, how much frequency. You'll
have the kids that are, you know, hanging upside
down on the monkey bars and they need 20 minutes
of that. And you'll have other kids who just
want to be wrapped up in a big heavy blanket.
But they gravitate to what they need. We just
have to be able to see it and then be willing
to create a space for that as well. Yeah, I agree.
I feel like. collaboration helps with that as
well working in a team whether that be with parents
or other colleagues working in that team setting
keeps me in that state otherwise it's so easy
to fall back on targets what I should be doing
what's next you know and you're right kids can
feed off that and that's a huge demand even if
we're not saying it just us thinking it they
can feel it they're incredibly intuitive PDAers
They're hypervigilant. They know when we have
an agenda. And I know my team keeps me grounded
in that. They remind me the beauty in the now
and being present and celebrating that. And I
think without being part of that team in collaboration,
whether it's parents or colleagues or family
members. It would be so easy for me to fall back
on what's next, what are we working on, you know,
for my own validation, I guess, on success criteria.
But it wouldn't be half as successful, you're
absolutely right, because they totally feed up
on that. That is an absolute demand and they
will reject that, quite rightly so as well. Yeah,
without just celebrating the wins. Yeah. And
I think the two things that I always keep in
mind is just about how that prefrontal cortex.
develops and it's through relationship so if
the only thing I do is provide secure attachment
and relationship then I'm actually doing a huge
service and so I just keep that in my mind and
then anything else that happens after that is
a bonus I also regularly refer parents and teachers
to there's a developmental hierarchy triangle
and it has sort of all the sensory parts at the
bottom for that bottom -up processing and so
parents will say oh but do I shouldn't I be working
on pencil grasp or something? And I'm like, well,
yeah, you can be absolutely. But here's all the
other things that are feeding into that. And
then they're like, so just going to the park
to do monkey bars is fine. I'm like, absolutely.
Like it's all working on shoulder stability,
which adds to the pencil grip in the long runs.
Again, we have to get curious and creative and
find ways to. do this without it feeling particularly
for PDA is like it's all just sit down at a table
and this is what we have to do yeah and that's
what I love about my job every day is different
and there is so much creativity and playfulness
and um yeah and it's such it's such a joy when
you can see this young person who is you know,
really quite hypervigilant and anxious. And then
when that little giggle comes and it's so, you
know, robust from just silliness, it's so beautiful
as well. And I just, again, I don't think we
give laughter and whimsy enough credit for a
regulation tool either. So that is such a good
point. And it's something that adults are particularly
rubbish at as a whole. And I think people that
are in that playfulness as a career occupational
therapist, speech and language therapist, a special
educator, teachers that are in that playfulness
mode all the time i think it's so healthy that
we laugh we probably barely laugh all day our
job is really fun playful and i feel sorry for
adults who have jobs that aren't in playful jobs
because it is such a joy and it is such a great
regulation tool i've never felt worse after laughing
no But it is hard. I had one mum who, you know,
and it makes total sense. I'm currently in a
degree of burnout and laughter feels really hard
to find when you just feel like you can't get
out of bed and you feel nauseous from being so
tired. Like I completely get it. And especially
if you've got, you know, an anxious nervous system
buffering off an anxious nervous system, it is
hard to find the laughter. Like that makes total
sense. Yeah. And I think that's what the difference
between home and school is. Yes. Yeah. I can
swap with my team when I need that break or that,
you know, that respite time. I can count down
to three o 'clock if it's been a hard day. I
can rest at the weekend. Parents don't have that.
And I think it's really important educators be
acknowledged. and we don't judge on the differences
of what they do with the children how they work
with the children because it is so different
they are coming from a completely different place
and maybe that's a good place to start us talking
about some activities or some kind of things
that we can do in the home that will support
parents listening to maybe find ways of having
that co -regulation regulating themselves and
finding that joy again even through the burnout,
which is such a big ask. Yeah. What does regulation
look like in your home? I suppose it's a good
place to start. Yeah, I think, again, it's very
child -led. I mean, my kids, I guess, have had
a bonus of having a mum as an OT for their whole
life. So particularly with my oldest. you know,
at eight weeks of age, the world had overwhelmed
him. And I spent three days sitting in the dark
in a rocking chair, just rocking him until you
could just see his whole system kind of relax.
And I think I knew there were solutions because
of my work and I had colleagues that I could
talk to about it and bounce ideas off. But I
think again, If you don't have that community
and not linked in with an OT yet, it can feel
really overwhelming. And again, you start to
get anxious and you think there's something really
wrong. And yeah, so I think I feel incredibly
lucky that I had the training that I had to be
able to do the things that I do. For me, I think
when they were little and the sleep deprivation,
everything was just chaos. I was definitely doing
activities to help everyone regulate. I think
when things changed was when I understood that
the thing that had to be regulated the most was
me and I made me the focus rather than completely
on them and just doing activities for them. And
by proxy, they would feel that I was more regulated
and then want to do what I wanted. what i was
doing sometimes as well the way that i talk sometimes
to parents about it is just so you have a format
in your mind i say four aces and a joker so if
you think about The ace of spades, that's our
shovel, that's heavy, that's our proprioception.
So we're looking for activities where those joints
are getting what they need. Push, pull, carrying
heavy things, being wrapped up in a blanket,
jumping, crashing. Wrestling is big in our house
and it's a great one for the PDAs because you
can get in some of that pre -orchestrated leveling
and a lot of autonomy. So that's really great.
I love wrestling. So that's our spades. Then
I have Ace of Hearts. So Ace of Hearts is in
the feels. And for me, that's music. So music
is something I use all the time in terms of regulation.
60 to 80 beats per minute is really kind of a
chill out. But with music, you have to meet kids
where they're at. This is sometimes where we
make this mistake. We're like, I'll just put
on the Mozart, but the kids are up here. So we've
got to meet them where they're at. Um, so sometimes
we need that fast paced kind of dancing stuff.
Bring it down, down, down, down, down. Yeah.
So yeah, I'll use that. I will sometimes like
yoga chanting. I'll just put it on in the background.
And my kids are so used to hearing satanama.
They'll just say it without even knowing they're
saying it. And sometimes my son will be like,
please mom, not this again. really need this
like my brain needs this and he'll be like okay
because we talk a lot about everyone's needs
and what we um and so it'll go on and he'll be
doing lego on the floor but he's like satanama
so while he's doing it doesn't even know that
it's this this unconscious entrainment of the
brain to go with the rhythm and the beat and
the repetition and it's just so powerful in terms
of sort of heart rate breath rate so i use music
all the time the ace of diamonds That's the sparkly
stuff that really, it's about you. That's about
the connection, the co -regulation, curiosity
and compassion, I feel like. Again, hard to do
when you're burnt out and you're starting to
resent what's happening, but they're really important.
Getting out in nature, if you can. So that's
the clubs, that's the tree. And then the joker
is the fun and the playfulness. So they're the
things that I use all the time. Rinse, wash and
repeat, really. Yeah, I love that. It's giving
structure to something probably that parents
are naturally already doing without even realising.
They probably feel like, oh, I just need to go
for a walk. It's validating, yeah, listen to
your body. Yeah, that's exactly what you should
be doing. That is your regulation. Rather than
feeling guilty for that, like, oh, I should be
supporting them. I should be helping them. It's
like, you are helping them. You're helping them
by helping yourself. Yeah. It's like the airplane
thing, right? Form on your own mask before you
help someone else. It's so true. You cannot regulate
somebody else until you are regulated. And I
love that you've structured it in such a way
that is so flexible around each person, but yet
it ticks off these really fundamental things.
And yeah, I'm sure the children will naturally
be doing it. They'll be watching you. You're
modeling how to regulate when you're feeling
that way, especially if you're voicing what you're
doing as well, making it really obvious and really
clear, narrating it, I suppose. Yeah. Then puts
no demand on them. Like you've got no expectations
that they'll join you. They can do their own
thing, but you're narrating it. So they're building
their understanding of, oh, maybe if I do that,
if I feel like that, then that will help me.
And without any demand, they've still got control,
I suppose. Yeah, and one of my new favourites
that I do often that the kids have kind of picked
up on. they will now there's a couple of things
that my kids will always ask for one is a game
called stand up sit down so essentially my my
big guy he's as big as me now but he'll sit on
the couch or camp chair whatever it is and he
gets me to sit on top of him so he's getting
heaps of proprioception like that and so but
then also because he has PDA he gets that autonomy
so he's like stand up sit down stand up Sit down.
And so I'm like, no, I don't want to stand up
again. You're making my, you know, you're hurting
my butt. My legs are so sore. I can't keep doing
this. And that's where the playfulness and the
fun comes in. And there's a bit of resistance,
but it's playful. And he's just laughing. And
he's like, stand up, sit down, stand up, sit
down. So it becomes a little game. we'll be at
soccer training. And he's like, do the stand
up, sit down. So again, he knows what his body's
need. He's asking for what he can do. It's actually
helping me because I'm getting proprioception
as well. And we're laughing. So that's one of
the ones he asks for all the time. Yeah. The
other thing I think that works for us is we,
we have, we just have a whole, I have a whole
heap of equipment around the house anyway. So
we, we have a little hammock. here that I just
turned around I can show you it's like a little
one like this but I also have nature then on
the opposite wall over here so I bring nature
inside when we can't go out and it's not the
same obviously as you know nice nature but just
having the rocking being able to like look up
at the beach and stuff it just The kids will
gravitate to that and it's just, I don't even
have to say, oh, it looks like you need a rock.
They just go because they've had that from such
a young age where I've sort of said, oh, it looks
like your body needs to move and it's never been
a problem. It's just, that's just what your body
needs and we can get what that need met. So,
yeah. I find I'm often rocking, especially in
a hammock because it kind of holds you in such
a beautiful hug -like way. Even my children that
can't. manage a hug from a person because it's
just far too much yes they get that hug sense
from the hammock which is they find really regulating
have you got any other resources like that that
you have it around the home that you use often
that you find really helpful Every day we have
what I'd call two boss chairs, which is two office
chairs that are wheelie that you can spin around
in. They're just at our dining table. That's
not even a thing. And they will fight over who
gets which one because one has a slice in it
from when there was a meltdown. So it just makes
dinner time so much more enjoyable for everyone
because they can just move. Also for the PDA.
what I do a process called backwards chaining
so for instance if the goal is to go to the drawer
to get the cutlery and I'm trying to scaffold
that I actually bring the cutlery to the table
and then I'll slowly move it closer and closer
to the drawer so now he'll just scoot across
in the boss chair on the wheelie chair and then
come back with his knife and fork I know then
though when he does ask me to get it for him
that that's a sign of where his nervous system
is at because I know that if he can do it for
himself he would much prefer to do that and I
don't say hey have you got your knife and fork
he'll just scoot over and get it and come back
so it's just little ways that you can kind of
get some movement in and do that and with our
PDA like there's no plating of food it's like
a little buffet and you just choose choose what
you want as long as it's all options that people
will eat and there's a good balance yeah i would
say with my kids still really like baths as well
as a good way to wind down but not all kids are
like that as well we do have a weighted blanket
and my youngest really likes to lie on that on
a big kind of squishy bean bag he'll do that
while he's on his ipad so you kind of gives him
a bit of grounding, bit of downtime as well.
And I have this giant piece of Lycra that I just
bought when they had a big sale at one of our
shops here called Spotlight. It was like 50 %
off and I can tie that around a table and create
a little cubby. You can just wrap them up in
it. It's so versatile. And so I just use that.
quite often as well and I've got body socks and
weighted balls lots of fidgets we just have a
bowl of fidgets just they go get them as they
need them yeah noise cancelling headphones we
have a couple of pairs as well so yeah we just
use pretty much everything we can that wouldn't
be on the sensory like list I love that it's
things like having a buffet out so that they
can choose their meals they can listen to their
body they know how like any home can do that
like that's such a beautiful example of a regulating
tool you know you're supporting them you're working
together it just tells them I believe you you
listen to your body I believe that you understand
your body like you're saying so much by just
trusting them in that and I think that is so
beautiful and then you said backward leaning
as well which is so wonderful starting with the
end goal and like and doing all the trips in
between and then you taking away a step and then
taking another way a step and then eventually
they are doing it all themselves but they've
they've done it in a way that you haven't given
them an instruction and told them to do it you've
just led them and guided them in that beautiful
long -term goal kind of way of yeah achieving
that independence skill i mean ultimately pda
is want to be independent and capable and to
do things themselves and i think that is so beautiful
and we should validate that in any way we can
i suppose there are there will be some things
into this though that i think we have some things
just have to be done like i can't wait for them
to be ready to clean their teeth or ready to
wash their hair or ready to leave for the school
you know what how do you manage those kind of
situations of things that they just have to happen
and they have to happen now? Yeah, I think, again,
it depends on where everyone's at. So I guess
with school can't, for me, that's a nervous system
state and and of itself. So we're at, you know,
functional freeze. Why are we at functional freeze?
There's actually not much I can do in terms of
regulating once we've got to school can't because
a lot of that has happened outside of this environment
at home. So, again, I would be looking at the
individual child and trying to figure out exactly
where their nervous system is at and then be
able to put some things in place. With my kids,
we have, again, used things that... particularly
in the more so for bedtime when that little brain
is trying to unwind. So we've used EFT tapping
before here. I find that really, it's quick,
portable. Again, I try to do these things that
are quick and portable because parents don't
have time. And sometimes for kids, again, like
this is not for my PDA -er, but my youngest,
he really liked watching a video and having someone
show him how to do it and then repeating it all.
The other one I do is havening and a lot of my
PDAs on my caseload are really into cats or pretend
to be cats or have pet cats and so we call it
kitty cat pats and so it's just this lovely slow
motion like this and if you're doing it in the
proper way you would have a mantra as well and
it includes like this and then like this so really
lovely so You can do it to the child if they're
happy to, or they can do it for themselves. And
then you would say a mantra like, I am safe,
I am loved, I'm secure, or whatever they want
to say that makes them feel fine and good and
safe. And then you just kind of repeat that until
you start to feel a little bit more grounded,
regulated, safe. And so that's called havening.
It's something that I... rely on myself when
I can't get back to sleep but also my kids will
ask for it can you do the kitty cat pats so use
those as well it's portable it doesn't take very
long you just kind of need to gather your yourself
for a few moments and take some breaths and just
sometimes that's all we need is just a few minutes
to pause and Again, the kids see you doing something
that helps and they're like, that's made mom
feel better or dad feel better. And maybe I'll
give that a go because they just feel it. They're
so intuitive. Teeth brushing is a bit of a weird
one. So particularly for bedtime, I read this,
I think it was an Instagram post from a psychologist
who said sometimes for kids that. have a bit
of an anxious attachment or separation issues.
The last thing you do is brush your teeth before
you go to bed. So it was more a psychological
reason that they're finding it difficult. So
we just moved brushing teeth into the bed and
it was a lot more receptive for both of my kids
doing that. Again, that was many years ago now.
And sometimes they'll just be so tired as well
that they're just, because they've held it together
all day. Like this is a really important thing
to remember is pick and choose. your timing like
if if you can only get one toothbrushing thing
in and it's not going to be at night because
they've they're at their limit then it's not
going to be at night i don't i don't think we
can force kids to do things that to them it feels
noxious it feels like this is the most threatening
thing that could happen to them we they're You
know, we've gone through a million different
toothpaste flavors, as I'm sure many parents
would have. Sometimes the little silicon finger
brushes will allow kids to have more control
and not gag. So sometimes they're a better option.
Vibrating toothbrushes, some kids will gravitate
to, and sometimes they can help with desensitization
as well. Yeah, yeah. Teeth brushing is tricky.
I have never had anyone, and it makes so much
sense. put the two together that you're doing
this really tricky sensory taste texture all
this stuff after a full day of holding it together
and before an evening that is often quite tricky
because yeah you're leaving your parent your
safety sleep is tricky getting to sleep is tricky
like the tooth brushing is like the worst time
in the evening and I've never put two and two
together that is So interesting to me that, of
course, that's going to be even more tricky to
do that really tricky thing at that really tricky
time. No wonder it causes so much anxiety. Also,
parents are really tired as well. You've run
out of all of your tricks and all of your energy
and all of your like, could you just clean your
teeth? No wonder it's often that really tricky
sticking ground. I think it's really beautiful.
One that you gave permission to just. Just do
it at a different time, I think is a really beautiful
and so easy support strategy for that. You know,
maybe you do it straight after dinner, maybe
you do it in the bath, maybe you do it in the
morning instead, I think is beautiful. And yeah,
why not? There's a couple of things that I didn't
say. I would, and having, again, doing it since
they're little, dimming lights, if you can, going
for lamps, doing all that kind of stuff. And
as a visual signal, I will get in my pajamas.
It just says, hey, it's wind down time. This
is what we're doing. Acts as a visual cue to
my expectations of them without saying the expectation.
I am very, again, fortunate that I do what I
do. And so I've made the implicit explicit. I
would be just commenting and saying, you're yawning
a lot. It looks like your eyes are falling out
of your head. I wonder what that could be like.
It seems like you're moving a lot slower. And
my kids will now tell me they are tired. And
that's a lucky thing that that happens. That
doesn't always happen if we have interoception
issues and we don't recognize when we're too
tired. With PDAs, you know, we went through stages
where... he would want to sleep in different
directions on the bed or in a different bed or
we needed to have this certain blanket and there
needed to be different amounts of novelty and
things. That has changed randomly, not that randomly,
but I'd been listening to this hypnosis app to
help me sleep and it's like a CBT script about...
you know, handling stress and staying positive
and, you know, you're going to cope, it's going
to be okay. And I listened to that when I was
pregnant and I thought, you know what, my ex
-husband was away so I had my kids for nine days.
I was like, I'm just going to play it for my
PDA when he's asleep. Like, what could happen?
It's fine. What's the worst that could happen?
And it was actually phenomenal. So we used to
not be able to go to Kmart, which is a big...
you know, department store here, lots of stuff
without, you know, a Mexican standoff because
we're not leaving till we get something, all
these big things. And we just, after that, you
know, two weeks, I could walk in, I could walk
in. I was like, like, yeah, it didn't change
his PDA. You know, he still is a PDA. He still
has nervous system responses to. those demands
being placed on him but his his capacity to sit
with the discomfort a little bit more was actually
quite big and handle disappointment was a lot
bigger as well and yeah I yeah it has been a
game changer so yeah that yes the other thing
is just that Things used to be so stressful.
And then again, we were incredibly blessed with
a gorgeous support worker who came to work with
us. And my ex -husband is a medical emergency
doctor. So think COVID, think the stress of him
being there, me stuck in a house with these kids.
It was a lot. And we fortunately got funding
for a support worker. And I was trepidatious.
I was like, one more person, it's going to send
it. round the bend I got him to come in and help
and he was just so playful and I was like this
is what's missing like the kids are anxious because
I'm anxious and I'm exhausted and I yeah and
so in bath times we I started a game called is
it a hat and I would just put silly random things
on my head like is it a hat and they'd be like
that's not a hat And then, like, a toilet roll
or whatever I could find. And so it was just
discharging that last little bit of anxiety that
was left from the day with that laughter and
that silliness. And then they would, like, be
much more willing to go to bed and happy to sort
of do that. I was going to say that's so relationship
-built. You could have been doing your best mumming
all day and then all they remember is when you
were really frustrated with them when they wouldn't
go to bed or wouldn't clean their teeth. It's
not fair, is it? That's not going to be their
last moment. And then of the poor mums. I mean,
God, you carry enough guilt as it is, which is
wrongly placed, I must say. But then if that
is their last thing, and then you've let yourself
down, you feel like you've let yourself down,
even though you've been doing your best work
all day, you've carried everything. You've carried
the load, the emotional load of everything and
everyone in your household. And then that last
little thing, that's got to be in your head.
Not all the amazing work you've done all day.
Yeah. One of the other ones that I do often hear
is just speak in an accent because it'll get
them to laugh. And one of the ones is King Julian
from Madagascar. So I'll be like, Maurice, get
me my towel. I need my towel. And they'll be
like, oh, that mom, she's at it again. Does that
help with giving instructions to PDAs to make
that be kind of fun in that way? become an accent
because then it's not mom asking me to do it
it's king julian or you know it's sometimes it
can help sometimes yeah it just again it depends
on where that nervous system is at and you get
good at going no humor is not going to work now
like this just needs to be held and heard and
all those sort of things yeah but yeah king julian's
been working quite well for a while the other
thing that i do often is i'll have fake tantrums
and i'll be like like throwing the pillow off
the bed and I say, I can't do this anymore. Like
I'm too tired. And he'll just be looking at me
laughing or shaking his head going, you're so
ridiculous. You know, again, it just gets them
laughing. And that's an outburst for you as well.
That's a very safe outburst for a parent to actually
have, because then you can kind of throw yourself
around a little bit. You're grounded in that.
You can throw things because you probably actually
do want to throw things and scream a little bit,
but you're not doing it in anger. You're doing
it, no. enjoy but you're still releasing that
energy aren't you yeah very good tactic yeah
yeah that works well i used to say i used to
say to my my pdf when he was little because he
a very um rule policey if because of the anxiety
and i'd say show me the rule book where does
it say in there that this this is absolutely
what we have to do and he'd be like it's here
can you help me to see it like so again there's
playful ways to sort of question you know is
this is this a fact or is this a tricky thought
that you're having and we can sit with the tricky
thought but we might also be able to find a more
positive one that's actually more aligned and
factual than what is going on so um yeah those
yeah that was amazing you're full of such great
advice there'll be lots of parents listening
and lots of parents will be totally relating
to everything you are saying about what it's
like to live and parent a PDA. What's something
that you would want all of them to know or to
hear? Yeah, I think one, I would say, trust your
intuition about what they need and don't be afraid
to ask for help. And if you feel like it's not
the right help. keep going because you know I've
got quite a few kids on my caseload who had seen
other OTs previously and they just didn't they
don't know about PDA or that's not their cup
of tea I guess and so they're coming to me having
a not so great experience and then when they
see that things can be playful and it can be
child -led and they're like this is so different
and But the thing is, even for the minority that
aren't PDAs, I work in the same way anyway, because
it's so empowering for children. And I think
the things, like when I think back to when we
were in school can't and some of the bigger aggressions
that were happening, we were thinking, oh, this
is just PDA. This is just PDA. And it actually
wasn't. It was grief. So the other thing to remember
is it's not always PDA, but sometimes we think.
It's all just nervous system disability and where
they're at but they have other really valid feelings
too and we need to be looking out for some of
those because I think as a group of children
they do experience quite a bit of trauma as well
because as a child you don't get a lot of autonomy
and choice and even with really parents. that
are well -meaning and are doing their best, there
are things that are going to happen that, you
know, it's, I think, yeah, a really tricky thing.
And just that, you know, I think you can have,
there's a lot of talk about radical acceptance
and I think that is very much needed as well.
But you also, like, this is just my personal
values. I just have, I'm a very hopeful person
and I have a lot of gratitude and I think you
need. all three of those things you need to be
able to as we talked about before witness the
small wins and be able to see yeah your your
child as a whole person just as they are and
know that they are growing and changing that
neuroplasticity does exist it won't take away
the PDA but nothing stays the same ever it'll
shift and it might be minute it might be minute
but there will be a shift and a change As I said,
try and create community for yourself because
it can be so isolating if you're stuck in the
house and just feeling like nobody understands
this and you're alone. There are many families
in exactly your situation and the more we can
take the shame away from what's going on and
talk about it because there's no possible way,
I don't think, for... two nervous systems or
three to be at such a heightened place buffering
off each other all the time without one or more
people going into burnout it's just it's not
possible and yet you can be doing everything
that you can at home and school might not be
on board and It's a tricky path to walk and,
yeah, trying to make those decisions as to, you
know, whether you homeschool for a period of
time and try and re -engage. It's really hard
to find what works. But I think, yeah, it's,
yeah. But, yeah. And I just respect PDA parents
so much. Like I just, yeah, they're some of the
most, yeah, really beautiful people. Yeah. And
they wholeheartedly. believe and advocate for
their children so well so well yeah i think that's
one thing that pda does really well is it actually
nurtures such beautiful parenting like i have
met so many wonderful parents of pda is that
just know their children so well advocate for
their children so well manage their needs just
almost effortlessly like they might have never
been taught this stuff officially They just know
how to say certain things, how to portray, you
know, whatever it is they need to do. They just
find these beautiful ways. And I'm constantly
learning from the amazing parenting of PDAers.
So, yeah, credit. If you're listening to this
and you believe your child is a PDA, diagnosed
or not, we just think you're doing such an incredible
job. And if you're listening to this and you're
not sure if your child is or not, good PDA practice
is just good practice. So whether you're a teacher
or a parent, maybe try some of this stuff. Look
at the PDA Society. Look up, you know, good PDA
practice. It genuinely is good practice. It wouldn't
do any harm to any other child or student if
you test it out. these things it just lessens
anxiety it gives them more autonomy um and it
just makes it more fun to teach them parent them
and all of those kind of things so it's just
good practice so if you're in doubt don't be
in doubt of the strategies just test them out
and yeah you will see that kind of connection
building that anxiety reduce for sure thank you
so much alicia talking about community i think
social media is such a beautiful part of that
now you know you might not have full understanding
in your family or you might the school might
not understand um you might not have a partner
who really understands your children and it can
be really isolating as you said but the beauty
of social media is that people in the UK can
follow you and people like you that are across
the world that are living you know walking in
their steps living there really similar life
to them and giving really beautiful and honest
an account of your life and i love your account
for that it's regulation nation for those of
you that want to go and follow on instagram where
else can people find you Yeah, just Regulation
Nation. I'm also on Facebook, but to be honest,
I don't go there very often. I find Instagram's
just easier format, but my business is super
sensational therapy services. So you will find
me on Facebook if you would prefer more formal,
but mostly everything happens through Regulation
Nation. And I don't mind DMs. I get asked all
kinds of questions and sometimes I can answer
them. Sometimes I can't, but I don't at all mind.
Cause yeah, I am about building community. Yeah,
absolutely. It's the only way and it's the beauty.
It's the best thing about social media. I'll
also leave those links in the description below
as well if you want to check those out. Thank
you so much for joining me today, Alicia. I have
loved having this conversation. It's so important.
And I, for one, my homework, if you will, is
to just find the silly. I think that is just
so, such a cheap, easy, accessible tool that
we've all got. And yeah, I just need to... I
need to do it more. I need to find the silliness.
And yeah, that's what I'm taking from this conversation.
So thank you for that. No problem. You can find
your own King Julian. You know it. I like to
move it, move it. Yeah, perfect. Thanks so much.