Hi, my name is Jordan. I am a special education
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hello everybody and welcome to the sensory classroom
podcast my name is jordan and today i'm joined
by emily who is raising underscore rare on instagram
emily is a clinical psychologist and mum to five
-year -old autumn who who has an ultra -rare
neurodevelopmental genetic condition called HNRNPH2,
which impacts every area of her daughter's development.
And I'm really excited to hear about parenting
from this perspective with Emily today. Hi, Emily.
Hello, thank you so much for having me here.
You are so welcome. I jumped at the chance when
I saw your request email come through because
I do speak to lots of parents, but often they
are falling into the bracket of autism and I
haven't spoken to many, if not any parents like
you. And then also you are a clinical psychologist.
So I am so intrigued as to hear. how that impacts
your parenting and navigating this world that
you're in too yeah yeah from your perspective
i don't know if you want to do like a little
introduction as to who you are and your daughter
Yeah, no, you did a very well introduction already.
But yeah, so I'm mum to Autumn and also her sister
River, who unfortunately doesn't get much of
a look in in so many ways. So I wanted to mention
her too. She is going to be two next week. But
yeah, so I'm also a clinical psychologist and
I have been for about 11 years, I think it is
now. I work, I don't work with children though,
I work with adults. So this is, yeah. It's different
working with children. I always sort of try to
avoid it in my career path because it feels so
much more complicated as I'm discovering on this
journey. In what way do you think it's more complicated?
what do you mean by that well I always remember
you have to kind of do a placement in training
so I did I did do six months in a in a child
placement and I just remember it was complicated
because it's not just one person it's the family
it's the system and that just like felt like
too many too many things to keep in mind and
so I just thought in my mind if I just work with
adults it kind of keeps things more straightforward
because you're just dealing with that one person
yeah because it's not just the mental health
of the child it's the mental health of the parents
who are impacting on the child it's the schools
it's um you know any anybody that's got contact
with that child it's it became it just felt like
too much for me to keep in mind yeah and so that's
really why I kind of yeah that's interesting
lots of the children in my class have huge teams
around them and it can be overwhelming to lead
those meetings and have those conversations when
everybody's coming at it from slightly different
angle it can it can certainly be quite overwhelming
for those that don't know what does clinical
psychology entail like what do what do you cover
within that because i guess knowing that will
then help us reflect on how that impacts you
as a parent Yeah, no, clinical psychologists
work with everybody and anybody, but it's essentially
anybody and everybody that might be experiencing
some kind of distress. So I think it is as simple
as that. So, yes, there are lots of clinical
psychologists that work in the mental health
field. And that's always been my sort of journey.
I actually work with NHS staff now who are in
some kind of work related distress. But I have
worked with people who have got kind of mild,
moderate, complex mental health needs. But clinical
psychologists can work with people with health
conditions. And, you know, as we said, children,
they can work in lots of different contexts.
So in the community, in schools, in patient settings.
So we kind of cover a wide kind of group of people.
Well, everybody, really. Right. So even before
your daughter came along, you had... quite a
good understanding of neurodiversity and neurodevelopmental
conditions, I suppose, that would affect mental
health? I guess, if I'm really honest, it was
a small part of our training, so probably not
as much as I ought to. And also, I think the
kind of environment has changed so much in the
last 10 years that... it wasn't really on people's
radar in the same way that it is now it felt
very much like a sort of specialist area and
if you're kind of interested in neurodiversity
that that's kind of you'd go on a placement to
be thinking about that sort of thing um you know
working with people with autism for example or
adhd or doing the assessments for people with
those conditions and yeah it wasn't whereas now
it's it's different it's it's very much like
you know it's it's We've got to be thinking about
it everywhere and we need to have that awareness.
And so I feel like I'm kind of learning from
my own experience with parenting autumn. That's
actually shaped how I've been thinking about
in my own work. So now I am actually leading
on the kind of neuro kind of affirmative changes
that we're making in our service. And it's really
small little things, actually, that we're changing
and doing. I've learned that it's those small
little things that make people feel seen, make
people feel understood, make people kind of feel
like, well, they're more supported, really, just,
you know, with their needs, their different needs.
Yeah, and I suppose that starts from even before
they're even in your door, you know, is the application
process accessible? Is the waiting room accessible?
it all accessible um i've recently i mean we'll
get on to you but um i've recently uh gone for
an autism and adhd uh assessment myself and sitting
in the waiting room was so inaccessible really
there was uh noise and uh yeah just we all the
weird things going on and and it just made it
really accessible the whole thing so it's just
really interesting to know that even before you
even step in the room sometimes some of those
situations can be inaccessible to adults or children
um needing that service yeah i think nhs environments
are really rubbish for it you know they've got
the terrible lighting and you know just noises
everywhere um like one of the things we change
it's so it's so silly really but there were just
posters and pictures and everywhere and it was
so busy like it was stressing me out going into
just the corridor so it's just like strip that
bag you don't need it all um it's just overwhelming
basically I think how more accessible the world
would be if everybody thought like that, because
it doesn't hurt everybody else. Everybody else
will find it less overwhelming too. Well, that's
right. Yeah, it's better for everybody. And like,
oh, the one thing that really bugs me is the
ticking clocks. Yeah, exactly. So I have to,
I'm working on changing that. But yeah, as I
said, it is little things sometimes, but that
actually do make a big difference. So your awareness
of those. crucial need for that comes from your
daughter so let's talk about her uh that's that's
really what i want to get into today did you
know about any of her needs before birth no nothing
um we had a very typical pregnancy birth was
was fine other than painful and yeah we were
oblivious it was covid times so We didn't get
to see other children her age to quite the same
extent. So we didn't sort of notice that she
wasn't kind of doing the things that other typical
babies would do. We just thought she was a really
easygoing, placid kind of baby. We, yeah, we
didn't notice anything. It was only when she
wasn't showing signs of walking. That was the
first sign, really. And that... to be honest
with you I was very much of the view that lots
of people say like you know it will come you
know every child's different just just wait it
out you know she's going to walk eventually it'll
be fine so I was just I was just very much like
let's just go with the flow like it's going to
happen like nothing isn't not going to happen
and little did I know I had no I just didn't
know I didn't realize we with River our second
now you we see the differences are so huge But
it's just like things like, you know, not reaching
out for toys and all kind of just engaging with
the world. Like she would engage with us. And
so I think I had that very classic. kind of view
of autism or you know that's the main kind of
neurodivergent condition that you kind of think
about which is like you know no eye contact or
just you know not not wanting to respond to your
voice and things like that and she wasn't showing
those sorts of signs so um i was actually really
reassured because she was smiling at us engaging
with us but actually on reflection she wasn't
engaging with the world and yeah and then she
wasn't showing any of that internal motivation,
internal drive to learn. And again, I didn't
really think much of it at the time. But on reflection,
when I see River and her internal drive to learn,
you know, she actually wants to kind of learn
things just very naturally. Oh, what's that?
You know, let's find out about this. Let's explore
this. It just came so naturally to her. Whereas
for Autumn, it's just not there. It's non -existent.
Everything she learns, she has to be. shown and
even then it's not just shown once it's shown
over and over and over again with lots of repetition
so yeah it started out with the walking and then
it's the you know lack of speech not talking
and then you know you become more and more aware
of just all the things that that children do
learn in those early stages that she just wasn't
learning she wasn't picking up So, yeah, she's
five now. She's nearly six. Developmentally,
she's probably closer to an 18 -month -old. Very
strangely, my second has surpassed her very quickly.
Almost all areas, I think maybe the only thing
that she's not quite doing is jumping and Autumn
can jump, you know, about that much off the ground.
But that's, you know, going to come very quickly.
But other than that, she surpassed her so, so
quickly. So that's kind of, yeah, hard to see.
Bittersweet in many ways. But yeah, yeah. For
Autumn, she is delayed in every area of development.
Because she didn't fit the typical, you know,
autism, like you said, the umbrella of what we
just naturally think of as neurodiversity. And
it was a much more, you say ultra rare, ultra
rare neurodevelopmental condition. Did you find
that there was a little bit of misunderstanding
when you first went to get support or, you know,
that kind of health tech kind of thing? What
did that process look like? Because she didn't.
tick those typical neurotypical neurodevelopmental
divergent boxes I suppose yeah it was a strange
journey really because we just weren't really
getting any information it was I think services
do a watch and wait so they weren't really communicating
with us kind of what could be what might be possible
and so we were kind of ignorant and oblivious
and so you know initially when it was kind of
you know she's not walking we went down the very
that just that path of okay so um let's find
out why she's not walking but actually we didn't
realize you know all the possible possibilities
of why a child might not learn to walk to begin
with and so i think because maybe because they
don't want to sort of scare you with all the
different potential options it could be but for
us that just meant we weren't then prepared for
what was to come yeah so we just kind of went
went through it very just unknown like unknowingly
um and you know things weren't mentioned things
weren't discussed it was just watch and wait
so even the walking it was you know let's just
watch and wait and then you get another phone
call is she walking yet no she's not yet okay
well we'll phone you again in three months time
and then it got to a point where okay now this
has been quite a while now let's do some more
tests and those all came back you know okay like
she had an MRI of her neck and her her brain
and that all came back normal and so physically
she has the capacity to walk yeah right okay
she is walking now okay she is walking now but
that was that was like our main focus because
we didn't know what else was to come and so Yeah,
then it was very much get her walking. So it
was lots and lots of us putting in the physio
input. We got very, very little support in terms
of NHS services. Because of COVID or is that
quite normal? I don't know I think again is we
got the impression there's a lot of watch and
wait but for us that was like no right and also
some of these things like the sooner you do it
the lighter they are the easier it is for them
to get it I've got a few children that sound
very similar to Autumn in my class actually I
think she'd fit in really well and yeah for a
few of them it was almost like a time pressure
to get them walking get them in their walking
frames you know build up those that muscle tone
because if they get heavy then they're going
to find it more difficult it's kind of what we
were finding so yeah time I would say time is
of the essence if it's going to happen you know
you want to get their muscles as strong as they
can be and and keep that motivation for them
if they are seeming passive already you know
things are being given to them you kind of want
to get that motivation of getting it yourself
and learning you know the benefits of that i
suppose and yeah we've had a few successes we've
had two that have learned to walk in my class
and one that never got there but he just got
too big too heavy and just found it far too difficult
to build that muscles in enough time i guess
I've never thought of it like that, I have to
admit. And that's really interesting what you're
saying. I think there was this strange internal
drive from us, like that we just have to get
her up on her feet. And we just kept, you know,
working on it and working on it and working on
it. Because of COVID, we had kind of more time
like at home, like we had that space to do that.
So we were able to do that. But we weren't really
guided with that. And it was only when I saw
other children with the frames that I thought,
oh, I... think that could be helpful for Autumn
and it was it was the key it like unlocked that
if I'm up on my feet that helps you know me to
get around and she didn't realize that until
it was actually happening for her with that extra
support so I suppose like you said right at the
beginning like she doesn't actually learn these
things we have to show her so by showing her
how accessible walking is and how she can get
what she wants when she wants and go where to
where she wants that's the motivator isn't it
and then she's got to just work on those muscles
coordination skills gross motor skills to kind
of get that yeah working how she yeah I think
that's the biggest the biggest thing that we
found well one of the biggest things there's
lots of big things but one of the biggest things
that we found is that you know she lacks that
she has not very many things that motivate her
and so like we have to be the most you know motivating
for her a lot of the time and that's really tough
going um and and yeah you know as part of the
of being her parent is you know helping her to
know what's you know good for her and know what
what's helpful for her but that's not easy either
like it's not easy to know when is that enough
screen time or um you know she really loves rocking
as a self -stimming behavior and that's really
hard to know when that's too much and we have
to kind of you know help motivate her to do things
that other things um and engage her into other
things that she doesn't have that motivation
or drive to kind of explore yeah i see that too
kind of getting I hate the word using lost, but
lost in their stim. That's what it feels like
from the outside. It's hard to connect with a
child that is stuck always in their, I mean,
I'm doing this because that's what I'm seeing
at school, but that rocking or stimming. It's
hard to build a connection. And we, as parents
and teachers and people that love these children
so much, all we desperately want to do is build
connection with them and kind of join them in
their world or get them to join us in some way,
kind of. build a bridge almost between the two
and build that connection and I can see yeah
I can totally see why you would want to monitor
that and just like give her opportunities to
access other things and other enjoyed activities
that are alongside us because we want her to
we want to enjoy her and have that connection
but also we want to show them how enjoyable social
interactions can be as well yeah I guess it comes
from a kind of comes from us what we need and
what we want but actually it is beneficial for
all ultimately and I love using intensive interaction
in that way kind of joining their world stimming
alongside them and you kind of build a natural
curiosity they're inquisitive as to why you're
doing what they're doing and you kind of use
their own language in a way to communicate it's
really really rather beautiful um i've never
thought about joy i love intensive interaction
and kind of apply it i guess in a way but it's
funny what you're saying about joining the stim
because that's what river did once and i thought
it was it was this really strange it's kind of
funny that you're doing it but it was also it
felt really hard to see because basically Autumn
was rocking on her bed and River joined her and
was rocking alongside with her laughing and smiling
and thinking it was really funny. And it was
this really peculiar mix of emotion. But it just,
as you were talking about that, it just reminded
me of that moment where she was essentially connecting
with her by joining her stemming. Yeah, I mean,
it can be seen in two ways, can't it? I mean,
it depends on the intent behind it. We don't
want to mock our children or mimic our children,
but we can echo their language back to them.
You know, if our intent is to connect and speak
their language and take away all of those huge,
scary barriers of language and... a world that
we don't understand away and come back to something
that they're actually an expert in you know she's
an expert in rocking and getting that feedback
so we can allow her to show us the joy in that
and genuine joy you know we're not just doing
it as a token gesture we're really working hard
to try and find you know what is it that she's
like is it the movement is it the balance in
the inner ear is it that the visual changes you
know what is she enjoying about this and really
trying to understand her world and meet her where
she's at using her language and that's how she
enjoys the world and then she might be less or
more trusting to then try our world a little
bit and our language and our way of seeing the
world it's just really beautiful and they really
are in charge and oh gosh it's the most affirming
practice in my view just because they are absolutely
in charge of it and they're the experts and actually
some of their stims are really hard to do or
some of their mouth you know vocalizations are
really hard to do yeah it puts us in the shoes
of being the learner and I don't know it's just
it's just really beautiful I think it's so wonderful
that River just knew what to do and I do I just
think siblings are just so in tune aren't they
I just think children are in general just so
in tune with what they need to do it's i'm learning
so much from river actually in her response to
autumn because you know nothing phases her she's
you know she's living in the moment with this
and as you say like joining her world connecting
you're still trying to connect with her in different
ways and sometimes it doesn't work you know like
she tries to hand her something or tries to say
oh look look 40 40 she calls her but i'm learning
like you know that it can be as simple as that
and i think sometimes my emotions around the
grief and the loss of what we didn't have complicate
what are just simple kind of beautiful moments
of connection so I am learning from from her
actually they work in parallel though don't they
you can be so in love with the child that you
have and still grieving and still coming to terms
with and accepting the child that you have it
isn't one or the other It very much is completely
in tandem together. You can celebrate the amazing
steps that she is making. And whilst also feeling
so much joy and pride is so much pain and grief
as to it shouldn't be this big a deal. Right?
Yeah. Are you right talking about that a little
bit as to like how you navigate that? Because
I'm really interested to hear it from a parent's
perspective. But also with your background of
everything you understand about how the brain
works. I'm interested to see how you're navigating
that because I can imagine you've got a parent
side of your brain and heart and then a professional
side of your brain and heart. And I can imagine
they're probably a little bit in fight mode a
little bit sometimes. Yeah. So how is navigating
that journey for you? Like the grief journey,
you mean? The grief, the processing, acceptance.
Yeah, all of that. All of that, I suppose. I
think being a clinical psychologist has given
me a head start, if I'm honest. I think I'm so
glad about that because I had knowledge. But
knowledge is just such a small step. You can
know something, but until you live it and breathe
it and experience it, you kind of actually really
know. But it definitely has helped having that
basis and understanding around emotions and what
emotions are and what they do. And I think for
me, it's meant that I've embraced all of it as
much as I can. I think what has made that difficult
to do is that there's also the pressure that
I put myself under to learn it all, figure it
all out. get all the answers, you know, become
a physiotherapist, a speech and language therapist,
an occupational therapist, understand the legal
system. A nurse, a social worker, we've got a
bow and bladder team, we could go on. Yeah, you've
got to be everybody, haven't you? Yeah, and I
did it all too much too soon, that's for sure.
So I made my kind of mistakes that, you know,
maybe I had to make them to know that they were
mistakes. Mistakes because it led to burnout?
Yeah, exactly. Yeah, it's just overwhelming.
I overwhelmed myself with the product. like being
productive around this like here's a problem
as in the genetic condition and it causes so
many struggles it causes you know struggles as
a family but you know all for autumn being dysregulated
a lot of the time and distressed a lot of the
time and here are all these possible solutions
that i need to find out about because no one
at once yeah all at once Because no one's going
to give me the book. I have to figure it out
myself. There's no guide. So, you know, and being
the parent that was able to reduce my work hours,
my husband being the one to, you know, work full
time, it then landed on me that I would be the
one to kind of have to do all of that research.
Yeah, so you replaced that, I suppose, that work
time with this was now your. yeah yeah no exactly
I definitely can see what exactly what you're
saying in other parents that I have spoken to
usually early on they don't know if it comes
from a need to like control just this like complete
shock of an upside down world that they've like
was imagining and then all of a sudden they're
not anymore and of course you're going to want
to kind of gain control and support as best you
can and always take responsibility for that a
little bit like it's kind of like a maybe it
comes from I don't know that kind of parent like
parent guilt i guess i mean all parents will
guilt but i think that's kind of and they're
trying to like well i can fix it then but yeah
i think it's right you are trying to problem
solve fix that is and i knew that that's kind
of you know that's what the brains do they are
problem solving machines they want to figure
it out and and and fix all these different problems
that this condition has kind of led to and created
um Yeah, it was very much just go, go, go, do,
do, do with all of that. However, if someone
came along and said, look, I'll do that for you,
I would have been like, great. It doesn't happen,
does it? It doesn't happen. And I suppose it's
only because of that that you were motivated
to get her to walk. It's only because of that
you were motivated enough maybe to research,
you know, the why's and the how's and get her
to doing it. So it's an amazing thing that you've
done. But it leads to burnout and ultimately
you not being able to just be the parent. No,
exactly. Because if you've got all these hats
on as well, you can't just be what she genuinely
probably needs you to be most is mum. Exactly.
And on top of that, it doesn't give you the space
to grieve. And that's, I guess, where I'm sort
of saying at the start is that I kind of had
this understanding and knowing about... how important
it is to just embrace whatever kind of comes
up in terms of the grief, all the feelings, the
ugly feelings, you know, the good feelings, all
of the feelings. I just didn't have capacity.
There was nothing left of me to be able to do
that. Do you think you kept so busy? Do you think
it was avoidance in a way? I mean, I think, interestingly,
I don't think it's a conscious process. Yeah,
of course. Because I knew that that's not...
a good way right that's what I mean like your
your business brain of course would see that
but ultimately like your body's in survival mode
probably I think the avoidance is actually a
good thing in lots of ways I think that's kind
of protects you well I think because when it's
too much you can only only face so much and so
the avoidance is kind of needed the focus on
productivity get things done is needed at that
time and on the other side it's it can get too
much as well and also the the space to grieve
I think it's just so unique to every person like
for me there is just a path that I had to go
on that I couldn't really do a lot of that grieving
to begin with and it's just had to kind of come
later and I've had to sort of wait So even when
I did kind of have these moments where I could
just sit there and cry, like nothing was kind
of coming out. I could feel the block. I could
feel that my body wasn't able to just kind of
go there. And I just had to wait and I had to
be patient. And, you know, it's more able to
release when I get the opportunity. But, you
know, I think I just had to be patient with that
as well. It's not like. case of you can just
tell yourself to grieve just turn the tap on
yeah I knew the emotions were there I knew like
I felt deeply about this but I couldn't just
let it out as straightforward as that it's so
complicated this of course our bodies are so
complicated aren't they as well so when you're
saying for parents to accept it it's accepting
whatever comes up but also accepting whatever
isn't ready to come up yeah yeah I think so I
think so yeah And accepting being a complicated
word as well, because what do we actually mean
by acceptance? I suppose it's just like letting
it flow as it is, I guess, like if it is or isn't.
I think, yeah. I suppose maybe trusting that
what you're doing, what your gut is telling you
to do is probably what your body needs for the
most part, maybe. I would say like listening
to your body is often better than listening to
your mind. Right. Because my mind was just like,
get the answers, figure everything out. And my
body was saying, you can't do it all. And you're
tired and you're exhausted. And let's just, you
know, be more patient. So I think, yeah, listening
to your body is part of that acceptance, really.
And yeah, but I think that's right. The acceptance
is just accepting numbness, actually, sometimes.
Right. And that's part of grief. Yeah, exactly.
If you look up grief, it's not all. crying it
very much is you know it goes through a whole
world of emotions and feelings and numbness is
often part of it yeah and it can happen in any
order in any amount of intensity for all different
types of people yeah yeah alongside joy and memories
and it's all this complicated non -black and
white non -linear thing isn't it totally totally
so that's burnout but what about recovering from
burnout and then whilst also trying to fight
for her needs meet her needs learn everything
you can to support her you know it's it's that
as well isn't it yeah well I it's really um I
don't know if it's um ironic or um if it's a
good thing but um kind of burnout is a big part
of my work with with staff so it's staff burnout
so again I have a little bit of kind of experience
there um however again it's just because you
know something doesn't mean that you can get
it you know figure it all out it's so burnout
recovery is just so complicated and I think it's
it just it's a big time thing it's it's it's
not this is where it's different from stress
because stress you can kind of go on a spa day
you can go for a weekend away and you can come
back and you can feel refreshed that doesn't
happen with burnout recovery not to say don't
do that but it it's it's takes time it takes
lots of those micro moments of of self -care
of um you know figuring out what your body needs
to recover and yeah it's not uh it's not quick
fixes like you can get from when you're stressed
out when you get stressed out you have a good
night's sleep you can wake up you can feel refreshed
you can feel ready to go for the day with burnout
you can have a really great sleep and you can
wake up absolutely exhausted And, you know, that
is a really big difference between the two. So
that means that what we do with burnout and how
you recover from it is much more about those
micro moments of how you treat yourself, how
you treat your body, things that are going to
help you to, you know, to get to find some ease
in the day. You know, whether like you say, because
the cause of burnout has been. from doing too
much then it's not like you've escaped it you
know this is a situation that you haven't left
or it hasn't ended you're still in it that's
what I was just thinking with work you might
make a change change your job change your role
change your hours that doesn't that option isn't
there for parents often no And so I think part
of that is, yeah, that kind of boundaries with
myself really about, you know, what's the negotiables,
what's the non -negotiables, what can I let go
of? And maybe, yeah, a big part of it has been
letting go of, like, I can't fix this genetic
condition. And yes, therapies can be helpful,
but... it's it's not about just doing more to
her it's not about like more strategies more
you know more of this more of that a big part
of it is just going you know with her flow and
you know learning from her rather than trying
to do more and do more to her so it's kind of
stripping things back actually and then you know
finding the things that you know the basic things
that are going to help her stay today as well
as kind of things that are going to help me help
my nervous system and I'm still learning it's
not like I've got it figured out and I've got
I've worked out exactly what I need and what
that's the point isn't it I mean for any parent
listening to this you know you don't have it
found out and you and of everybody you know If
anyone would, you would. And it's quite nice
to hear you say that, I think. It's quite validating,
I'm sure, to parents of, you know, you're still
working it out. And that's absolutely okay if
everyone listening is too. Because also, as she
gets older, there's new things to figure out.
In my class, there's age four to age 11. And
the parents of the four -year -olds are going
through very different things as the parents
of 10 and 11 -year -olds. you know it's the same
level of things it's just different you know
yeah it kind of is this continual learning and
navigating this world I guess as they're changing
and developmenting and as you're changing and
the world is changing and developmenting and
it's all it's it's constant learning and adapting
and choosing and being selective I guess like
you say of what you're bringing in yes it might
all be amazing we need AAC we need walkers we
need this we need this especially with social
media we're constantly bombarded with all the
things we could be doing yeah and I think that
can be a beautiful thing because we're getting
access to all these professionals that we wouldn't
normally get access to as easily in our pocket
all the time but it can be dangerous in that
we end up not committing to anything properly
we end up doing a little bit of everything and
not actually thinking right what is our focus
let's be consistent with this let's stick to
this and and really work hard at it together
I suppose might have more benefits than doing
everything a little bit I agree and you know
it would overwhelm her as well like if we did
so much of those things and like we don't we
don't want to spend our entire weekends like
just doing therapy and you know going to therapy
appointments and things like that which it's
it's hard for her so yeah it's I think you know
that's a balance that's a learning curve to figure
that out like when is it too much when is you
know when is it needed and yeah I think It is
really helpful to have permission to strip it
back and just do simple things, simple strategies,
things that you're going to remember rather than
things that are too complicated. Like, you know,
we've got a behaviour plan with so many things
listed on it and I can't remember it all. I can't
keep it all in mind. So I've just taken out five
bullet points, stuck them on my wall and I still
forget the five bullet points. that's a really
great point that's such a great point because
if it's not memorable for you then how is she
gonna remember it or it's so inconsistent I mean
that's great advice for parents and teachers
I would say is the more simple the better and
yes okay that list of things is maybe your long
-term goal but maybe yeah like you say take a
few and work on them you know in little bite
-sized chunks until they are just habit and then
move on to the next bit i suppose that's why
we do ieps from ehcps because if you just worked
from the whole ehcp god that's so overwhelming
it's until they're 25 like that you know you
couldn't work like that you couldn't work on
all of the targets and all the points were at
the time whereas just selecting those few ieps
to work on each term is the little steps to get
you to achieve those those big ones i suppose
it's more realistic all around because then you
know you can kind of work out what's worked as
well whereas if you're doing loads of things
all at once in a haphazard way and then you see
some kind of progress or benefit like how do
you know what it was that was helpful whereas
if you're doing you're not focusing on for one
week or a couple of weeks sometimes it's longer
than that for us like we're just going to do
this kind of one strategy um and we've noticed
a benefit after that month then great keep using
it if we're not really seeing any change let's
just drop it because you know it's not helping
anybody to keep it in mind let's try something
different but you know you've given it a good
go and it still hasn't worked yeah whereas I
suppose if you were doing a couple other things
as well who's to know and then you could be wasting
your energy and time on things that actually
just aren't appropriate yeah yeah and it's all
just too much it's just It's just strategy, strategy,
strategy. So that's a really good way if, like
we said before, having all of these strategies
and wanting to fix all of those things is giving
you a sense of control. So pairing it back if
you do it in that way. You know, parents can,
yes, hear the team around the child. You might
get 10 different reports of targets of things
they need to do. And that in turn means there's
100 targets to do. You know, as a parent, you
can take control over that. yes they're the professional
they're the team but actually you can pick one
from each that you're going to work on the professionals
just have to accept that they you know they cannot
be priority at all the times and you're going
to have to explain that to them you know you're
going to have to advocate for your child and
just remind professionals because i'm a professional
too you know i often forget you know How much
is going on for these families' lives? And I
think my targets are the most important. Well,
so does every other professional. And sometimes
it is the parent's job to be the advocate and
say, look, do you realise that we've got all
of this? You almost sometimes show them the folder
that you've got of all the targets. Actually,
we're just going to work on medical care or we're
just going to work on speech or we're just going
to work on gross motor skills this month because
we want to get it. right and if there's some
overlap of things that can work at the same time
great but actually sometimes just taking that
control can make you feel or make the strategies
actually more effective for a start make the
child less overwhelmed and make you less overwhelmed
so you've actually got energy to do it and see
it through and be consistent with it remember
to do it like you said you're so part of it there's
no point having you can have the best targets
in the world if you're not remembering what they
are i mean there is not as useless as the paper
they're written on No, I am so on board with
this. And it just, it makes it seem so much more
hopeful. And it's certainly what I've been working
on. Yeah, that's true. Otherwise, you're always
seeing what you're not doing or what you haven't
achieved. Oh, yeah, exactly. Yeah. And I think
as well, you as the parent can prioritise because
you know for your family what's the most important
need right now. And that's always quite glaringly
obvious, I think, but it's not necessarily to
all the other professionals involved. So I think
to get that control, we all need control over
our lives in different ways. If we can find that
control to choose what's going to be best at
the moment to focus on, I think that's a really
good piece of advice. Because ultimately parents
know their children best. These professionals
are coming from one section of... the need that
they have they don't they aren't the expert in
your child and your family and your lifestyle
and what you need and and that's where you come
in that's where you know parents are the expert
and that should be respected i think above anything
else and and to trust your gut as well you know
even if the professional is saying this is most
important this is most important actually your
gut probably knows what your child really is
wanting absolutely Yeah. Are they, is it, I mean,
it's all important. I suppose that's the tricky
thing, isn't it? But is it more important that,
you know, sometimes it comes back to down to
the hierarchy of need, doesn't it? And ultimately
children need to feel safe and fed and be able
to regulate their temperature. You know, it comes
down to basics and then you build in, are they
scared all of the time? Okay, well, let's focus
on that. You know, that comes before speech.
That comes way before academic learning. I mean,
God, academic learning is the last thing. behavior
is the second to last thing yeah it has to be
it's sometimes useful thinking of the pyramid
of learning i don't know if you know it but um
if you google the pyramid of learning you'll
see the hierarchy and it really does start with
basic like am i safe yes it's really you know
what will make our child more safe well maybe
that's the best target to start with because
actually maybe everything else will fall into
place maybe you'll all of a sudden see that a
reduced you know in unsafe behaviors or maybe
you'll see a reduction in dysregulation if ultimately
they just feel seen and heard and safe so it
really if you're a parent and just feel completely
overwhelmed by all the targets then sometimes
it's best to strip it back in that way and just
think about that hierarchy of need that pyramid
of learning and going there because i can assure
you the academic targets yeah absolutely are
the last thing like almost just ignore them and
that's coming from the teacher and it's true
for the parent as well the hierarchy of need
because And it probably is a similar thing that
you can then focus on. But yeah, if you focus
on your hierarchy of need and go back to the
base of what's going to make you safe and not
just physically safe, it's like you said, it's
emotionally safe too. Like what's the thing that
would help you to feel emotionally safe that
we can work on here? And I think if you ask every
parent of a SEND child, the thing that will come
up is overwhelm, feeling overwhelmed in some
form or other. And so I think this idea to kind
of strip things back, as you said, makes you
feel more like you're in control, but also reduces
that overwhelm that you can just kind of focus
on one thing at a time. it needs for it to change
whereas when you're overwhelmed it's like a scattergun
of approaches then where you just do a bit of
this here a bit of that there and that's not
actually helpful either I think that's where
burnout comes from because you're not you're
not getting that dopamine hit of it being successful
you're just seeing this huge wall in front of
you of things that are totally unachievable they're
not smart targets they're not measured in fact
the targets just keep getting further and further
away because you just keep adding more and more
to it which ultimately leads to burnout doesn't
it whereas if you are taking control of it and
saying no i'm going to focus on this one target
then it's achievable you get that dopamine hit
of success and feeling like you're doing something
and then you add the next one i feel like that
is a way of not feeling burnt out I mean it's
easier said than done I know that I really do
know that as I'm saying this I'm thinking you
know it's hard to do that but I think it ultimately
will lead to a feeling of success and control
and yeah ultimately will help everybody involved
probably yeah it's it's the really obvious kind
of cliche thing I guess but it is so true and
valid it's the small steps take small steps but
I yeah I just think that you know when you're
When you're feeling overwhelmed, also just acknowledging
that you want to do it all, all at once. Of course
you do, because you want to solve it all. You
don't want to be in this situation. You don't
want to see your child struggling. You don't
want to feel the effects of, you know, whatever
the behavioral issue is. That is exactly what
your mind will want to do or want to try and
figure it all out all at once. However, and...
it's not going to help to try and do it all at
once as i have learned from experience totally
and me too as well you know how i um support
the kids in my class it's so easy to think that
they need to do all of the things you know especially
with social media you know this is We're talking
on social media. It's worth mentioning that it's
incredibly overwhelming to see everybody doing
all of the things, you know, but it's all working.
It's all fabulous for them. And then we come
to actually our reality because, of course, their
reality isn't actually like that. We come back
to our reality and thinking, oh, I need to do
this. I need to do this. This isn't enough. You
know, I'm not doing enough. I'm not spending
enough. I'm not spending enough time. It's so
easy to feel like inadequate, really. Yeah, no,
I've definitely fallen for that too. Like just
seeing like the therapists who've kind of got
all these different wonderful ideas and you're
thinking, my gosh, I've got to remember that.
I've got to kind of keep that in mind. I've got
to learn more about that. And you kind of make
this list get longer and longer and longer and
longer. And of course, they're wanting to kind
of. produce more content and you know get more
interaction and you know you're kind of okay
you're feeding off that but actually just again
it just adds to that overwhelm and I'm guilty
of that too and ultimately like if I've been
doing this for 16 years so you're getting 16
years worth of knowledge that I've done little
step by step and learn I've learned step by step
all the way but I suppose by me just regurgitating
it all at once you know in two posts a day or
whatever I do it might be helpful to just filter
that out for yourself so and just remember you
know she's done this step by step over 16 years
you know I don't have to do all of 16 years worth
of stuff today actually I can just pick one thing
you know almost then mute me work on that one
thing and then unmute me I give you permission
to do that if that helps you actually get that
strategy in place I think that's actually a great
idea yeah No, I agree. And because it's so easy
to then go fall into judgment, you know, judging
yourself that, you know, you haven't done enough.
And, you know, you haven't. Yeah, you haven't
learned enough about enough things. And, you
know, you're failing at everything because of
that. And yeah, it's worth it's worth the reminder
that, you know, I've only got to this place of
taking small steps, even when, you know, sharing
this advice over and over and over again with
my clients. But then, you know, going through
several years of it myself and I still don't
always follow that advice either. Yeah, of course.
Don't judge yourself. We're human, aren't we?
We're not robots. We're human. I saw a really
lovely post the other day by a parent and it
was saying your children aren't on Instagram.
They don't see the things that other parents
are doing that we see. They're not comparing
you to other parents. They just want you to be
their parent. All they know is what you show
them. So kind of just take that pressure off
really and, you know, do what you think is best
is ultimately better because the children certainly
aren't aware of what coulda, woulda, shoulda
be. No. That's all they know. No, I love that
idea and just getting into their mind about what
they care about and what's important to them.
It's really important, especially for our non
-speaking children. It's all guesswork. But we
know them. You're an expert in your child. Just
because she can't tell you verbally, you know.
You know what's important to her. You know if
she'd rather make requests or toilet independently.
You know that. You know what's more important
to her. Regardless of what the professionals
say is more important, you know what she wants.
So maybe that's where parents... can advocate
i think because yes it's all important of course
it is but actually there will be an answer your
child will want one over the other and you know
you know that you know what they actually want
yeah i just think yeah i think that's it's coming
back to what we were saying a bit earlier but
just that this whole world is so complex and
everything about it and all the different approaches
and ideas it's just so complicated and that's
leads to overwhelm and actually it's sometimes
it's just about the simple things it really is
and just tuning into that so I think if you're
feeling overwhelmed tune into what's actually
simple because it's the simple things that usually
are more important that matter and I bet those
simple things so many parents are naturally doing
absolutely yeah yeah offering choices is such
a simple way of connecting with your child um
yeah they just know when to give bath time they
just know how to speak with their child you know
i just i love watching parents of children who
have no training at all but they are absolutely
their child and just seeing them doing everything
right it just brings me so much joy at the gate
you know they just know i don't know to use less
language or to they use little hand gestures
they don't even realize they're doing it yeah
and actually you're probably doing everything
that is needed already probably yeah no that
makes me think of like if i'm if i meet um you
know a child who has some difference And I just
suddenly like go, I don't know anything. I'm
just like, I don't know anything. I don't know
how to interact with this child all of a sudden.
And of course, the parent is doing it brilliantly.
And then, of course, when I'm with my child,
I'm probably doing it pretty brilliantly as well.
But yeah, it just goes to show because you just
know your child, you experience their world.
And yeah, you know best, doesn't it? I love the
sentiment of this podcast. It's kind of about,
it's hope, isn't it? And just trusting your,
just having confidence in what you're doing and
what you know. And that being the reason you
advocate, not necessarily new knowledge, but
just actually what you already know is enough
and trusting in that. And I think what a lovely
way to start the new term with that in mind.
So everybody listening to this, me included.
this term I think we just need to give ourselves
some credit and listen to our gut and just think
about that hierarchy of needs like for our learners
and our children and and for ourselves yeah and
give yourself grace as well can I add that yes
absolutely with yourself because it's so much
it is so much it will only help us be better
advocates and better parents and better teachers
For our much loved children. What is, I suppose
we'll finish with this. What is something, like
considering our conversation, what is something
that you would want other parents or children
or teachers, neurodiversity, I suppose, and from
your stance, what do you hope that they would
get from this and our conversation today? I think
for other parents that are going through a journey,
it's a unique journey. Your journey is your journey.
But I think just to take from this around listening
to your body, listening to your gut is probably
a good piece of advice to do that as much as
you can and to validate what's there as well.
I think a lot of... Other parents who don't have
neurodiverse children, they get a lot of validation
externally from others as parents. That's so
true. Yeah, you really do. Like you just, you
know, just in so many forms, just find the way
that you're feeling is really similar to, you
know, what they're going through. But for neurodiverse
people, we parents, sorry, the parents of neurodiverse
children. it's you don't get that sort of external
validation in the same way in fact you get a
lot of toxic positivity you know or you get people
that don't say anything at all um you know because
they don't know what to say they're not sure
what to say so you have to find that validation
from within because you're not going to get anywhere
near enough externally yes we've got our wonderful
kind of communities on online and that's really
helpful and really helps to validate that's why
it's so needed because you know it's not easy
to just find people locally um it's just not
the same it's not easy so yeah i think to validate
your own feelings whenever they come up um you
know it's it's complicated there's there's there's
hard feelings there's feelings of guilt there's
feelings of anger there's feelings of loss and
sadness those are all valid feelings and experiences
so that would be my advice for parents going
through this journey for the teachers i mean
i think um one of the things that i think is
so key and important is communication because
For most of us parents, you know, with children
who are non -speaking or, you know, very limited
in their communication. So Autumn can say words,
but she's not forming sentences. I can't have
a conversation with her. So when she finishes
her day at school, I don't know what she's been
doing. I don't know what she's found difficult.
I don't know, you know, how it's gone. And it's
so important, I think, for that to be communicated
because we've lost that. We're missing out on
that. So I would love for teachers to be able
to kind of really prioritise that, that that's
really important because it's important so that,
you know, there's some continuity between school
and home. But it also helps families feel connected.
And the school is part of their village, their
support system. And if they feel disconnected,
it's such a lonely experience anyway. It just
only makes us feel more isolated and lonely.
So I think... And I think sometimes parents,
I do certainly, you know, worried about bothering
teachers. We don't want to ask too many questions.
You know, you're so busy. We get it. We know
that, you know, as much as you can to be able
to let us know, like, what have they been up
to? What did they enjoy? What didn't they enjoy?
And it's OK to make mistakes, you know, and or
to not not necessarily know the answers either.
And I think sometimes my experiences of mainstream
has been that. Instead of kind of saying, well,
we don't really know what to do. It's like, don't
tell you because they don't want to be kind of.
thought was not getting it right and actually
I would prefer if you just say like we just we're
stuck just like you we don't know what to do
this is really hard so that we can be together
with that stuff yeah that's really great advice
because then it validates you're not knowing
as well doesn't it if you both don't know together
and you can work it out together and test it
together and again that breeds that idea of community
and it's yeah one one voice I suppose in that
sense rather than you both having your own ideas
yeah that's really really great advice because
absolutely communication is key for everything
and it goes both ways as well you know the more
we know about what's happened the night before
or at the weekend it helps us navigate their
day better because we can understand oh they're
probably tired because of this or they're probably
overwhelmed because of this or anxious because
of this you know the more we know the better
and I'm sure that's the same for home as well
yeah yeah you'll manage situations far differently
if you have that basic understanding of what
their lives have been can i ask you a question
because of course autumn is starting a specialist
school okay september so it's a whole yeah a
whole change whole shift for us what's what's
helpful i mean you've kind of touched on it there
but what's helpful for us parents to kind of
what do you think would be helpful in terms of
maybe our mindset going in or like what would
be helpful for us to help you Yeah, I've got
a really great podcast on this, actually. It's
one of the few, I think it's number five, I don't
know, number four. It's with Spinning World of
Autism, all about her son starting school. And
she asked me the same question. And I said that,
remember, your job isn't to be the teacher and
prepare them for school in that way. It's very
much to prepare them to get through the door.
So, and that's where your job ends. So it would
be things like... practicing the journey preparing
them with visuals practicing uniform wearing
if that is a thing at their school so that is
kind of the preparation for the transition from
home to school I would say to focus on in the
holidays not necessarily the actual academic
work like she was saying things like oh is it
important that they can toilet themselves or
is it important that they can put their own shoes
on and things I think no don't worry about all
that Just get them in the door, get them in the
door as regulated and as prepared as you can,
I would say. Yeah. And also don't be afraid to
give, don't be afraid to be that parent was also
my advice. We love that parent. Don't be afraid
to give five sides, double sides of A4 on that
first date, all about them and what their triggers
are, what they like, what food they like, what
they don't like. Don't be, don't worry about
being that parent. We love that parent. because
we don't have to read it all on the first day
but we've got something to refer back to if something
an anomaly comes up and we're not sure about
why they've reacted this way or whatever when
we're preparing our lessons we can have a really
good idea of what a nightmare situation looks
like for them what a dream situation looks like
what motivators might look like for that you
know for that person and so some kind of like
all about me it is really helpful i've got a
happiness audit actually if anybody wants that
i can leave that in a link um down below It's
written by Flo Longhorn, who's a wonderful sensory
specialist teacher, actually, who's since retired.
And it's a happiness audit, which basically it
audits what is happiness for that child, which
in turn then lets you know what they don't like.
So their favorite smells, their favorite tastes,
their favorite sounds, toys, way of building
friendship, their favorite way of communicating,
all of those kind of things. It's really useful
for our teachers to know that. Otherwise, we've
got to spend the first... three weeks learning
that stuff whereas you guys know it you're the
expert already so if you can give us that head
start then it means that we can have that already
and then we can start right from the off of you
know getting going with everything else that
we want to do so especially if you're starting
in as year one you know um then that would give
them a really good head start to get to know
her quite quickly, get her to feel safe at school
quite quickly because she'll feel really understood.
She won't understand why, but she'll feel really
understood because they've got her motivated,
they've got things that she likes, they aren't
doing things that might trigger her and all of
those kind of things is really helpful. So yeah,
don't worry about being that parent. Don't worry
about asking too many questions. Don't worry
about questioning why we're doing things because
we are very happy to answer why if we know the
answer. Also, if we don't know the answer, then
it's really great because it gets us to think,
yeah, why do we do that? And sometimes it gets
us out of a stagnant situation. Yeah, don't worry
about being that parent. We love that parent.
That's very reassuring. And I'm excited for her
to be in a space where all of those little things
about her are just going to be so well kind of...
attuned to I guess they're just going to kind
of those are the things that they're going to
be wanting to know about and connect with rather
than the kind of you know just where she at in
maths yeah exactly yeah I kind of I am very proud
of the fact that I know my kids siblings names
pets names and the football team their dad supports
or mum but I have no idea what the academic level
is off the top of my head And I really love that.
And I think that's special education done right.
We really are part of the family. We really know
the family and their child so intimately. It's
such an intimate relationship. I have my children
for seven years in my classroom. So that's incredibly
intimate by the time they leave us. And they
are really our family. And I feel like that's
what special education is. It's the holistic
approach of what's needed for that child, even
if it doesn't look academic. um we try and pair
the two but actually our main focus is connection
and having the child like enter our world and
after into theirs and building trust and working
on all of the things that you want to do and
maybe taking some of that load off of your list
maybe you're just working on one thing but maybe
we're working on three and we could do it together
yeah so it's it's that as well thank you so much
emily for joining us podcast this has been So
enlightening. Thank you so much for your raw
and openness and honesty and also your wisdom.
It's been really, really, really great. You're
very welcome. I really appreciate being able
to offer some thoughts. Of course. You really
have. Yeah. And it's so, what an amazing position
to come from with being able to share both of
those things. If you would like to. learn more
about Emily and Autumn's journey then definitely
follow them over on Instagram at raising underscore
rare see more about what she's been talking about
today in practice and follow that journey um
yeah thank you so much Emily for joining today
thank you thank you I've loved it