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. This is a little bit
different. I don't normally do a little extra
introduction. But there are some topics that
we talk about in the podcast this week that might
be seen as controversial. I just wanted to make
it really clear what my intentions were and what
Victoria's intentions were before this conversation.
I think Victoria actually handled it incredibly
well. And I'd like to think that she made it
very clear that these aren't suggestions for
everybody and that looking at gut health and
diet. And sensory needs and moving out of school
and all of those quite extreme measures in order
to support your child wouldn't be taken lightly
and aren't a blanket rule for everybody. Also,
her intention certainly wasn't to diminish her
child's neurodiversity or autism. It was more
so that her child feels comfortable and healthy
and well. listen to the podcast it's incredibly
interesting her story is incredibly interesting
but just know that it does talk about diet and
gut health in regards to sensory seeking behavior
and and trying to kind of reduce that and reduce
that anxiety and reduce those kind of extreme
seeking needs that were making her son feel very
unhappy but also just know that all children
are individual and you really do need to know
what's best for you and if you are looking at
taking medication, not taking medication, changing
your child's diet or doing anything like that,
then do seek medical advice. Go to your GP, get
a nutritionist like she did, you know, speak
to your occupational therapist just to make sure
that it is safe for you and your child and you
as a family and it's the right thing for you.
Okay, enough said. Enjoy the episode. Hello everybody
and welcome to the Sensory Classroom podcast.
My name is Jordan and today I'm joined by Victoria,
who is actually a former police detective, although
that's not what we're going to be talking about
today. We're going to be talking about her experiences
as a parent and particularly around the topic
of gut health and what she has noticed in and
around that. topic and conversation. I'm very
excited to talk about this topic today. We haven't
spoken about this topic yet on this podcast so
I'm very excited to introduce Victoria. Hi Victoria.
Thank you for having me. You are so welcome.
I've been looking forward to this chat. Like
I said in the introduction, we haven't even dabbled
at all into the topic of food and the impact
that that has on our lovely young people. Let's
start with who you are, what your background
is, because it all contributes to this conversation.
Yeah, it does. Thank you. Yeah, I think, so as
you said, my background is in investigation.
I'm an investigator by nature, I think. I like
to be a bit nosy. I like to understand and I
like to feel informed. So with those few things
in mind, when... Our youngest son was diagnosed
with autistic spectrum disorder and a sensory
processing disorder. But way before that diagnosis,
way before that, as a tiny babe, he had a lactose
intolerance when he was born. So feeding became
quite challenging. We noticed this. We'd worked
with it with our eldest. Funnily enough, same
thing with our eldest, lactose intolerance. Something
in the gut. completely incapable of digesting
the sugars in milk. So lots of understanding,
I think, in the medical profession that this
was happening. It was happening more frequently,
but I didn't really understand why. I just knew
I needed to address it. So we were encouraged
to use alternative milks or in our youngest son's
case, the neutralizing of the lactose wasn't
working. We had to go on to a very special milk
for him. So just to help that. that gut. So what
the symptoms were for him were extreme cramping
at a feed. And they were what I got to observe
is as soon as he was, he was hungry all the time.
And when he was feeding, he was cramping and
would pull off of a feed in pain. And this was
really young, really, really young. Yeah, it's
really, really young. Yeah, at that point. So
a baby in arms, still feeding under six months.
But for the first year, he had a supportive milk
to try and help his gut progress. Right. As we
got older, there was a lot of activity that we
were observing. This is a very active child,
desperately does not want to sit down and doesn't
enjoy some surfaces that he's sitting on. So
carpet and certain things became quite sensory.
Leather, the differences, the exploration that
would go into these surfaces was something else
I had not witnessed before. So, yeah, it was
just observing all of these things. It's the
investigator, isn't it? It's like, what's happening
with my child? Yeah, exactly. And you said he
was the youngest child. So how many children
had you had before him that you could kind of
do the comparison with, I suppose? Yeah, no,
I have just the one before him who is... Yeah,
he's nine years older. So there was a bit of
a gap as well. And I was thinking, well, let's
see. Let's see, you know, what happens here.
The beginning started the same. Both had transient
lactose intolerance. One came out of it about
a year. I don't think our youngest ever really
came out of it. That lactose intolerance was
trying to show itself as something else. So that
was way before any autism diagnosis or any sensory
processing diagnosis. But it became painfully
clear just how important. the gut was to our
son and how he was developing because I didn't
realize that there was a connection until a nutritionist
was working with us to say it looks like the
gut, there's something in the gut that's aggravating
him. I think we eat fairly common and relatively
healthy foods. Most of what I was doing at the
time, working full time there at school and nursery
and everything I do goes in the slow cooker or
gets ready in the oven. And when I come home
from work and everybody's starving, you remember
that time? And they all come in and it's like,
right, feed me now. And I'm like, yeah, they
just want crisps and biscuits. But you're like,
I'm there going. From the oven. So it's the slow
cooker queen, definitely. Was food something?
I suppose it's maybe hard to answer this and
hard to even know about him, really. But was
food, even regardless of the gut health intolerances,
was food as far as texture goes? Because you
mentioned that his interest in texture, even
just the texture of food, was that something
that you noticed in him too? I noticed not so
much texture, but volume in that there never
seemed to be enough. You know, the normal sort
of parameters you would expect for I'm full,
that didn't happen. I'm just going to keep eating.
Interoception, really knowing what's happening
inside, not knowing if he's thirsty, full. For
some children, it's not knowing if they're full
or hungry or thirsty or not or hot or cold. I
suppose for him, he just didn't feel that full
feeling. No. There was a portion on his plate
that was equivalent to his brother that was like
nine years. older and and he was still going
and reaching for more and I'm thinking you can't
possibly be just rest for a minute have a drink
try you know something thinking that's a lot
of food for a little one and he wasn't he was
tall and you know 90th centile as you on those
measurement things and he's tall and he's broad
uh but the appetite really surprised me I thought
well I need to be a bit careful here because
I'm not sure you know that it can be problematic
if you get too big So it's like, no stop, you
know, then yeah, you have to kind of monitor
that, don't you? As soon as he could open a cupboard,
he was in it. As soon as he could open a cupboard,
he was constantly at the food. It's quite oral
seeking as well. It would be often mouth things.
So it was probably a bit of the like interoception,
not feeling his full, but also that wonderful,
like our tongue is. our exposed muscle right
you get so much feedback if he's sensory seeking
so much feedback through the tongue the tastes
the textures the crunch that everything so if
he's seeking that and doesn't feel full it's
just a recipe for It's wonderful that you do
that because it was a sensory observation that,
like you say, it's not something... When he just
started crawling, my husband was in the garden
and he turned around because he heard a crunch.
So he just crawled outside and he heard this
crunch and thought, what was that? Turned around
to find our youngest is on a garden snail. Oh
no. A wonderful sensory experience. It was an
instance and he didn't understand where that
was coming from or anything. So it was really
quite distressing for him. But everything went
in the mouth. So I remember an intense period
of time of everything on the floor was going
in. It was a typical developmental stage. It's
just lots of children then grow out of it after,
what, 18 months? They start to learn what's edible
and non -edible and then that stops, doesn't
it? But obviously for some children, these sensory
seeking or seeking children, he was exploring.
Yeah, he would explore his world through his
mouth. That was certainly what I felt he was
doing at that point. There's a sensory seeking
without a shadow of a doubt. But he's learning
about the work by putting everything in. checking
it out you know sometimes you take it back out
again as well you know it's like oh no i don't
want that i we tried to give him a dummy to try
and help the whole but no no he wasn't having
that what that was that was done it's instantly
rejected yes the ear of a soft toy so there's
a lot of sensory touch as well particular ear
on a particular rabbit that you really don't
want to lose do you as a parent do not lose their
rabbit instantly calming instantly calming from
the uh from the ear of the being in particular
areas was really important to his regulation
and sense of self sense of self -confirmation
was pica ever mentioned by the nutritionist no
no i just wonder i mean yeah i as um i've had
lots of oral kind of seeking children through
the years and only recently i've learned about
pico it's spelled p -i -c and it's an intense
interest in exploring the world through usually
eating though not just mouthing usually eating
it's like usually things that are natural earth
type things like clay sand bark gravel stone
soil that kind of talk those kind of things and
that is also linked with yeah seem to be linked
with a lack of zinc or you know in your diet
so again it's coming back to yes anxiety yes
sensory seeking but it's all coming back to this
topic of what is missing in our system and what
our body's trying to find and we would find it
through vitamins and multivitamins or whatever
it is but our children don't understand that
and they're trying to find this sustenance their
body is seeking through snails and Twigs and
all the other things. And this is exactly what
happened at A &E. One day we were picking up
from nursery. There was some fear that there
hadn't been an observation at a particular point
and they weren't sure how many Lego bricks he'd
managed to get in before. And so we were asked
to take him to A &E and just check. Absolutely.
Nothing was going to be causing a block in the
tummy or anything else. As a result of that A
&E appointment, the medical advice really was
that he shouldn't be putting things in his mouth
at this age and he's probably missing something.
We had to push a little bit for a blood test
to say, I can't work out what's missing from
his diet. He has a very balanced diet of red
meats, white meats, carbohydrates. For me, all
the nutritional elements were present. Because
that's not common with autism. You know, it's
very common for autism. I suppose he's sensory
seeking. If they were sensory avoiding with the
textures and the taste, then they often have
a very bland diet. I suppose if he's a very sensory
seeking child, he'd probably quite like all the
textures and the taste of a variety of food.
So in that sense, you were doing okay. You know,
he was eating a... He was eating a very varied
diet, which is probably in my ignorance in having
a very, very basic understanding of the word
autism before they mentioned it. I was expecting
non -eye contact. I had it. Fussy foods. No,
I didn't have that. Non -sleeping. No, I didn't
have that. And the list I had, it didn't conform
at all. Confusing, isn't it? When you've got
an idea of what something should be in your head.
And then you've got this child in front of you
and these words are being fired at you. And there's
a mismatch in your mind. It's really confusing.
And then you're not given any maybe more information
or anywhere to turn on what this means for your
child. Because it is different. It's such an
umbrella term. And there are things that are
similar, which makes it autism. But there is
so much difference. I've worked with about four
or five hundred children in my career. And I
could not tell you that one is the same as the
other. They share similarities, might share similar
interests or whatever. But they are, yeah, so,
so varied and so different. So it's really confusing
for parents to navigate that, isn't it? When
you've got such a very basic level of understanding
and it's headline, you know, it really isn't
the depth or anything else. It is literally,
like you say, the umbrella that everybody talks
about. There's so much that we don't talk about
that is actually happening here. Like you say,
so it can be very confusing as a parent. For
me, I thought, yes, he's very active. You know,
he doesn't like to sit, but okay, he's just very
active and he needs wearing out a little bit.
He needs lots of activity. He wasn't picking
those boxes that you knew of as autism. Yes.
So I suppose, then where do you go with that?
Do you go to Google? Like, what did you do? Well,
it was the doctor at A &E that said, I'm going
to refer you through to a pathway and see if
you can have a look because he's not sitting
here happily at all, is he? I was like, no, he's
not sitting happily. They kind of put two and
two together, the mouthing, the developmental
stages kind of in that typical chronological
age link, the sensory seeking. They were kind
of thinking it themselves. A little bit of frustration
and aggression that was possibly young for...
you know, he's three, he's got good verbal skills.
So why isn't he communicating? Why is he choosing
to communicate this way? Exactly that. So that
sort of ticked some boxes and we ended up very
quickly in a diagnostic system, which was very
full on for about six months, I think was very,
very full on. But one of the major things that
came out was his sensory seeking, sensory processing,
how that is very, very different. Lots of sensitivity
around the shoulders. Days where he just couldn't
be touched there, could not. So when he was at
school and someone puts their hand on his shoulders,
he could react in a myriad of ways. That's so
interesting. But in some ways, people can be
so sensory seeking and yet in the same body,
they're sensory avoiding. And that's really hard
to navigate if you don't know their profile.
So how useful to you, right, from the offer.
I don't know if every parent gets that much information
in that much detail, actually, that you're getting
that understanding of your child that, OK, he's
seeking in this area, but he's, you know, avoidant
in, like, touch or... And hearing. So avoidant
in touch and hearing and seeking with... some
touch, you know, a bit very much on his terms,
you know, it's very, very much on his terms.
And it just took us a few years to really observe
him and understand that. But what we could also
see is that there wasn't a good bit for him where
he was. So he couldn't manage, you know, everybody's
doing the very best they can with everything
they had. And we were just heading down the lines
of, you know, we need ADHD type medication here
or something like that. Because you were seeing
that hyperactivity. Absolutely. We were putting
the brakes on that a little bit to say, I think
since day one, we've actually had an issue with
the gut. And I'm exploring with a nutritionist
about the gut and whether calming that will support
the behaviors that we're seeing at the moment.
So I'd really like to support that natural path
first. I'm not saying no, I'm just saying it's
not my first port of call. Yeah, and I suppose
that makes sense if with all of his history from
a young baby, it makes sense that you would go
to that, that that was his difficulties early
on. When you didn't know anything else, that
was the main... thing your brain would go back
to that yeah absolutely we those problems hadn't
gone away they hadn't um they hadn't changed
we were still having you know extremes with the
bowel as well which is obviously where we see
the you know the trouble with nutrition isn't
it or the trouble with our digestive system is
how the bowel is behaving and that you know we
were we were having the either explosive bowel
calcified bowel or very you know extreme difficulty
and you think wow there's no it's a sign isn't
it that something isn't right something isn't
quite right so that's what we we were letting
other parents know that if you've got this you
might want to explore this if you if you want
to this is open as well there's nutritionists
to work with that for us were particularly helpful
we took will's diet right back to bone broth
we actually did it as a whole family i was not
popular with my teenage son at that point don't
you really you kind of have to do it all together
to kind of do that yeah you have to do it together
otherwise it would feel really cruel wouldn't
it absolutely it for us it felt awful you know
and i'm trying to get my teenage son in the end
he ended up with fabulous results himself he
said actually that's really really good everything
right back so that as you're adding things you
could then see what was flaring up certain the
advice we had from the nutritionist is that yes
you've cut out wheat you've cut out that you've
cut out the usual suspects and you're not seeing
any change but what people don't seem to understand
first is what you must do is clear the gut first
he said so what we do is we need to clear out
the nasties and i wanted a an expert to help
me because of his age thinking it's one thing
to detox myself but it's something else with
a small child that doesn't stop eating how am
i gonna help him manage this How am I going to
convince him that bone broth is a good thing
for him? So how did you do that? Because I can
imagine there's lots of parents of autistic children
thinking, God, bone broth, I'd be lucky if I
got, you know, chicken nuggets into my child.
So how do you navigate that? So he would have
been, where were we, about eight years old at
this point. So he's been struggling with this
tummy for quite some time. So we had a bit of
buy -in. on the basis that he was distressed
by his gut's behavior. And we couldn't work out
if the anxiety he was struggling with was caused
by the gut behavior or the gut behavior was because
of the anxiety. So we encouraged him that we
were all going to do it and that we made a big
game of it, a big game of it, from buying the
carrots and buying the, or finding an organic
chicken in the first instance, you know, finding
an organic chicken. Having it delivered to the
hat, making just a big game of it and really
allowing him to explore the things that go with
it. So the washy hands and yeah, by all means,
touch the carcass. I wouldn't ordinarily do that,
but yeah, you need to touch the carcass, touch
the carcass. Now we go back and wash our hands.
Yeah. Yeah. Making it, allowing him some control
over it, I suppose. That was the big buy -in
from him was the fact that once we've made this
big pot, huge pot of bone broth. that William
could come to it at any point and help himself.
So it gave him autonomy, which was quite a big
buy -in from William to say, I can have as much
of that as I like. No one's going to tell me
no. If I'm hungry, I can have that. The bone
broth thing lasted about a week. The guidance
we'd had was to wait until the bowel firmed up.
So once it was firmed up, but he was passing
quite happily. We probably got rid of everything
that we need to get rid of. It took about a week,
six days to a week. Bowel firmed up and he started
to calm. So the outbursts were less. The running
off was less. The, you know, the thumpy hands
was less. And I thought, okay, so let's just
see what happens here. We started to introduce
organic meats. Really stewed. So, you know, very
minimal chewing, organic vegetables, kept it
as clean as we could. And six weeks later, gradually
introducing these, you know, last things were
salads and fruits. So gradually introducing these
things, we saw a big change. Is there anything
that you added to his diet and then went back
on it because you started to see, you know, some
uncomfortable? in his body again yeah so we kept
him clean for about a year completely clean and
then of course he we moved we moved from the
channel island no fast food to the uk quite a
bit and of course peer support over a few friends
that what's mcdonald's exactly like i don't want
to ban you from these things i need to exactly
that because the more i ban it the more you're
going to want it We spoke about that last week
in the podcast, actually. So yeah, exactly. So
let's work with it and see, you know, try it
and see how you feel. So after that year of keeping
it very clean, I think it took that long for
him to feel comfortable in his body again. So
although he was much calmer for us to manage,
it was so much easier to speak to him. That the
difficulty we had in getting him to slow down
so that we could talk. so that we could get it
in it was much much simpler at that point understanding
was improved as well as his whole absolutely
and we all saw benefits they're cutting the dairy
out i'd had a rash on my arm for as young as
i can remember i've always had this rash on the
back of my arm i didn't realize i had a slight
reaction to dairy it's very slight some things
you never brought back so something so things
like dairy you never put back into your diet
after the year we have Sorry, for the first year
it was very, very clean. Now he experiments,
but he does it in, again, he has an element of
autonomy with this. It's like, right, I'm going
to eat some chips. Okay, have some chips. And
then the next day it's like, I'm going to have
some bread. Just remind you he had chips yesterday.
Potato seems to cause him a problem. Right. The
wheat's in bread, depending if it's highly fermented,
if it's a really good sourdough, he can just
about manage it without having anything. You
know, gluten -free breads even can cause him
some difficulty. Processed, aren't they? There's
quite a refined flour. I think it is a lot of
the processing. The cleaner he is, the healthier,
the happier he is, should I say that. I know
he's healthier, but he's definitely happier.
So that, I think there was just a very big connection
there for him. It makes so much sense as well,
doesn't it? That if somebody's feeling uncomfortable
in their body, Let's imagine he does have interoception,
you know, he doesn't feel full. So he's not really
reading his body is what his body is needing.
That's the first, like, that's the first kind
of statement. But then also imagine that you've
got an intolerance, so you're so uncomfortable
in your body, but you're also not being able
to read those signals as what they are. It makes
so much sense to me that you would then, with
all this going on in your body, just as a baseline,
that then you would. struggle to receive and
interpret information you would struggle to moderate
your behaviors you would struggle to do all these
things because you've already got so much going
on as a baseline in your body it makes so much
sense to me that almost clearing out that gut
health issue for him yes means that he can then
his body can focus on the other things that maybe
he finds a little bit more tricky like receiving
information interpreting information managing
his regulation and all of those things Absolutely.
He was open. He was more open before he was quite
closed down to being in whatever was happening
within him at that particular point that he couldn't.
We didn't have the language to be able to express
it. And I mean, whilst he's verbal, these are
big feelings, aren't they, when they're in your
body? How do we express those really big feelings?
That's not easy when you're a little person,
is it? you know, socially, in a socially acceptable
manner, express those feelings. I know adults
that struggle with that. When any of us are feeling
in pain or uncomfortable, it's really, we find
it difficult to moderate ourselves. So yeah,
I mean, add autism on top of that and aid and
everything. No wonder, you know, he was... Well,
the reading we did was around the gut psychology.
So it was the gut psychology diet that we followed.
with the support of a nutritionist to make sure
that we were completely safe all the way through
it, that we wasn't going to be missing out on
any essential nutrition at all just by going
back to bone broth for six days, because that
was breakfast, lunch and dinner for six days
and whatever snacking he needed to in the meantime.
The other thing that came with that was he seemed
to not so much fill up, but he seemed to understand
sufficient at that point. So it's almost like
he was trying to get something out of his food
that just wasn't there. When we kept it very
clean and very organic, that changed. He was
able to feel I've had enough, you know, but he
will be back an hour later. That was absolutely
fascinating to me is to look at his body craving
sincere nutrition. So we look at those sorts
of foods. We keep him predominantly there. But
yes, he's now a teenage boy and he's going to
experiment. He's also playing rugby. And funnily
enough, food and nutrition has become such a
big thing for him that he's fascinated by it.
And that's the field that he's looking at. He's
studying. He's massively interested in how to
keep his body well and everything. It gave him
a connection with himself that I just don't think
he had before. He was very young, but it's become
an interest. He's fascinated in what's happened
to him as much as anything. If that makes sense.
Yeah, it didn't. Initially, when we were looking
at medication, it was an effort to help him fit.
And that's when we wrote our book. There's actually
a bit of magic in not fitting sometimes is that
it gives you another path. If even when you've
got some diagnoses and everything else, don't
forget to look at the whole picture. of your
child you know it is about knowing your child
isn't it I wouldn't profess to know every other
every other child as you've said they're as different
as each other to say in this podcast actually
that it's fantastic that this worked for your
son it's so fantastic and it's one case and it's
amazing and we're certainly not saying that his
autism was cured that's not what we're saying
that's not what we're talking about here he's
still very much autistic and very much you know
have those sensory needs but what we're saying
is by um having it's just really interesting
to me that when his body didn't have to think
about trying to heal itself and trying to manage
all of this digestion that it could focus on
other things yeah and i think similarly i think
to if a child is incredibly anxious in an environment
then they can't receive information they can't
interpret information they can't moderate their
behavior and you'll see outburst kind of crisis
behaviors if they're feeling anxious well you
know take the anxiety away they're not no longer
autistic it's just they can moderate their body
that little bit better because they're not having
to use all their energy just to combat and work
out the anxiety and it's the same internally
too isn't it it's knowing ourselves isn't it
i think for every single one of us knowing ourselves
and what works for us is As individual as we
all are, it's great to kind of share this information
to say that, you know, if you're having the same
experiences, you may have some success here.
But I'm not saying for a minute that it will
definitely work for everybody else. That is not
what I'm saying. I'm just saying that I noticed
the gut was an issue way before anything else.
I was fascinated by this gut -brain connection
that is being made by clinical psychologists
and doctors, medical practitioners. And I thought.
that could be something for us to look at because
the gut was showing itself to be the first issue.
So maybe if the gut is aggravated, the behaviours
could follow, you know, maybe some of the behaviours
could follow. And that was certainly the case
for us. That's not that he's not autistic. Of
course he is. And he still has very much sensory
processing thing, but he's not reaching for,
we notice now when he reaches for food for comfort.
And it's that, how are you feeling? And we have
that discussion instead of him grabbing the food
to try and eat his feelings. You know, like that's
okay because there are, again, there are plenty
of people who do that. But I'm trying to teach
you how not to eat your feelings so you have
the body shape that you care about. Yeah, and
general health and that you're understanding
how to name your emotions and ultimately manage
those. in a safe way, I suppose, which is what
we want for everybody, isn't it? Just managing
your body, knowing your body, regulating your
body. And meeting his sensory needs was that
appointment with the occupational therapists
were just absolutely fabulous. They were letting
me know what I was observing, what it meant.
That was wonderful. So every time he's spinning
like this, he's winding himself up. He needs
to be this way to calm it down. I'm thinking,
oh, thank you for that nugget of brilliance.
because I now understand what he's doing when
he's spinning. I now understand that he's trying
to give himself energy to keep going. But actually,
let's bring you back here. Maybe it will be a
little calmer for you. Rugby was fantastic. He's
passionate about rugby now, absolutely passionate
about it. Occupational therapists said he's going
to need impact here. So for a while we had weighted
blankets. We had rucksacks. you know, to go everywhere
so that we've got some weight on these shoulders.
He doesn't like the shoulders being touched,
but he needs something there. Now it's rugby.
It's contact. You watch him, his whole system,
he's that much calmer. Amazing. It's fascinating.
It's what I'm saying to teachers and parents
a lot of the time, actually, is if your child
is, you know, doing a certain, meeting their
needs in an unsafe way, it's not about stopping
them. It's about... Being an investigator, as
you absolutely started this conversation with,
and thinking, why are they doing this? So the
spinning, for example, why are they doing that?
Okay, so they're trying to, yeah, get their energy
up or they're trying to, you know, whatever it
is. They like that sensation, that vestibular
sensation, their inner ear. Maybe they're seeking
that kind of inner ear because they're a bit
low in that. How else could we do that that's
not in the middle of the road? Or how else could
we do that? You know, very young, we're hitting
people. It was getting to the point where he's
very strong and he's actually hurting me. And
I thought, oh, this is really hard. Yeah. And
going in for a hug, he needed to dig his elbows
in really hard. And you think, I actually can't
breathe right now. This is, you know, as much
as I'm loving hugging you, ow, this is really.
We're understanding the why behind that and unpicks
it, doesn't it? And it's not. a aggressive behavior
it's not a naughty behavior it's him trying to
meet his sensory needs how he knows how absolutely
through trial and error and it's our job isn't
it to unpick that as well as the professionals
get the professionals involved really understand
what's really going on there and then find maybe
safer well like you said we redirected the hitting
to pillows on the floor build an angry mountain
and you can hit that as much as you like until
you're really tired there you go is that better
as he got a bit older it's a punch bag it's not
people sweetie it's a punch bag you know we don't
we don't hit people we don't hit things and it's
a learning process isn't it of what's it's not
that these boundaries aren't here it's just where
do you fit in them and without making yourself
feel bad because you know if he hurts you he
feels bad it didn't mean to hurt you he just
meant to deal with the the need he had you know
he doesn't understand that it's actually that's
quite painful and also he might quite like a
hard hit for him but he doesn't it's a lot of
understanding to understand how that might not
be pleasurable for somebody else quite a lot
of learning going on there isn't there so much
learning this is why we withdrew because we understood
that we withdrew from the school environment
and came to a home education environment because
we could see the intense need for what he needed
to learn was currently not a curriculum thing
it was a it was going to be quite a bit of time
with the self of like let's let's understand
you and then we'll go back in that environment
when you're ready was it a similar time that
you were out of the school system as that you
were also doing the changes in yes it was we
really everybody involved tried their very best
to do everything they could to have will in that
school environment, myself included. I was very
much stuck on the, you have to go to school because
I have to go to work. And that's the thing is
he's a school age and I have a mortgage, you
know, what do I do here? So everybody was quite
keen for this to work. It was very clear that
it was driving him down. He started to have a
very poor image of himself. And that, I think,
goes too far at that particular point. You realise
how far you can push. And when your child is
saying, no, I'm absolutely done, where it showed
us was in lockdown. Will was at the bottom of
the car loss and really, really struggling. When
I said, you won't be going in whilst we're essential
workers, you won't be going in because I could
see him having real trouble with the masks and
Will was still licking things. So it's not going
to be particularly welcome in a pandemic, you
know, the child that licks people. I'm like,
OK, so, you know, maybe not. Maybe we'll keep
you home and it's nicer for everybody. You can
lick this window because I clean it. Love him.
I love him so much. He said to me, mommy, I will
do anything not to go back in there. And I said,
okay, I think you're at a high level of distress
now. He'd already spoken about wanting to die
because he didn't fit. He didn't understand how
to get on this rainbow. He just did not understand
it. He didn't understand that he was actually
moving when he's being told to sit still. And
it was incredibly, and he turned that all inwards
as well. So it was showing itself in a really
unhealthy way for him to continue to develop
from this negative sense of self. When we started
education from home, I think the same as everybody
else, the lessons were coming in from his teacher
and very, very quickly he worked out that at
8am, if he is on the computer, he can do his
work in about two hours and the rest of the day
is his. And I saw it. Different part of my son
at that point was this need for autonomy. The
pressure sensitivity he had to being on task
and demand, that was really showing itself. People
had spoken about demand avoidance at a very young
age with William. We could see it as a need to
lead. That's what I saw in him was this need
to be first at the front to lead. He'd go on
in where angels fear to tread, that one. And
I'm thinking, okay, so, but if you need to do
that, you need to understand that mistakes. are
A, definitely going to happen if you're going
first. Mistakes are going to happen. You're going
to get a lot of learning. And if you're turning
that all in on yourself, suddenly you're feeling
really bad about yourself because you're making
mistakes and you've got this idea that mistakes
are bad. It's not what the school were teaching,
but it's what he learned unintentionally that
mistakes are a very bad thing. And I thought,
okay, we need to unpick some of this. When he
learned, I've done my work. He went from the
bottom of the class to the top of the class.
And his teacher said to me, are you doing much
of that work? And I said, with the greatest respect,
I've got more than enough of my own. So I'm just
fascinated at how he has shifted from, and it's
my time, and how he was exploring. It wasn't
led by me. You know, my husband and I were working
as well. It wasn't led by me. This was his own
personal exploration. He was coming in with a
lot of joy of, look what I found. Come and share
this with me. And suddenly that's when we could
get in. Again, he could be interested in it.
He could choose topics of interest. He could
work at times that were suited to his. rhythm
i suppose like if it was yeah 8 a .m to 10 a
.m if that's when he works best then that works
for him yeah 8 a .m to 10 a .m if somebody's
asking me to do something i can do that after
sort of 10 a .m and even now sort of after midday
in the afternoons it's very like he really needs
his own space and his own ability to explore
he needs limited instruction at that particular
point in time so we're quite careful about the
language we use around instruction i tend to
wonder if i wonder if someone could get that
bin for me it's fine we'll we'll get the bin
quite happily with those with pda so pathological
demand avoidance is that kind of i wonder if
questions and we're hearing them a lot actually
as parents are doing podcasts it just makes me
smile because i know exactly what you mean you're
trying isn't it yeah to keep the demand i mean
If you think for a minute, I'm a former police
officer. I'm pretty used to being quite direct
with my communication, not indirect. So it was
a huge learning change for us. I can't ask him
to do anything. Hang on. It's very difficult.
It's like a puzzle, isn't it? Yeah. But watching
him over this period of time, lead himself through
his own learning and come and ask the questions
and state what he needs. Mum, I need to go to
Greece. I have to see this place. And he's like,
OK, yeah, I'll put it on the list. You know,
it's fine. I feel well for that. You know, let's
do an enterprise thing. Yeah. Yeah. Exactly.
And, you know, or I'm fascinated by this. Can
I buy this so that I can go into this class and
find out what this is all about? I really want
to know. It's an entrepreneurial skills class.
I really want, this sounds fascinating. I would
really like to do this. That's wonderful. Then
here we go. There's my card. Life long learner.
He hasn't lost that love of learning. That's
been a big pivot. A big change is to understand
that no, well, you don't have to have this figured
out by 16, 18, 25. You just don't. It takes as
long as it takes. You will find your path. If
there's a test to be taken for you to be able
to evidence your learning, I'm sure you'll take
it at the point that is absolutely right for
you. And it was letting go of an awful lot of
things for us. It's not easy because there's
a lot of conflicting views out there. And it's
very difficult when... When the behaviours modify,
people think, oh, he's fine now. Because of all
these changes and strategies in place that he
is managing, he's now being given or learning
from a whole bunch of tools to put in his kit
bag for walking onto the rugby pitch and feeling
a little anxious. So he goes to the kitchen here
and he makes a cacao and banana smoothie. So
he knows he's got a game. He knows he wants to
perform well. Up comes his personal pressure
at that particular point. No matter what I do,
performing well is really important to him. Personal
pressure comes in. I haven't had anything to
do with it, but I've got to help him manage it.
I didn't want to go down the line of medication
to start with for what I would say was chronic
anxiety at the point that we discovered cacao.
Now, cacao has really high properties for phenyethylamine
and anandamide, which are your self -love. the
chemicals that release in your body naturally
when you fall in love. I mean, if you can do
that with yourself, that's kind of great, isn't
it? So you can love yourself a little easier.
It's a little, and it calms because it works
in your cardiovascular system rather than coffee
in your central nervous system. I use it myself
to keep calm. It's a way of, I'm calm. I can
manage this. If he's throwing out some unpleasant
stuff right now, it's not about me and I can
manage it because I'm not full of caffeine. I'm
full of cacao. So down it comes, down comes my
anxiety and down comes his. And it's amazing.
So important, isn't it? Yeah, definitely. You
want to be a role model for your children, don't
you? And it's like, well, I can't tell him to
calm down if his behavior is triggering me. And
I'm like, hang on, I can't get there yet. If
you're homeschooling as well, then you've got
no respite from each other or very little. So
it's even more important, I feel, to try and
co -regulate in that way. Absolutely. Yeah. I'm
going to play devil's advocate. I hope you don't
mind. I know some listeners will be thinking
this too. How do you know if you started unschooling,
homeschooling at the same time that you started
changing the diet? How do you know that it was
gut health that was making the impact and not?
the school system changes and i just think that's
good that i have to ask it yeah absolutely it's
a really relevant question it's really really
relevant the first thing we changed what so if
you imagine we're coming into the um the school
refusal phase and that is when we started to
change the diet at the lockdown as well so all
of these things happened at once yeah i had the
time to change the diet, to focus on cooking
differently and all the things I had to learn
as well because of that lockdown period. But
when we first went into it, he was still very
dysregulated, you know, and running and banging
and all kinds of things. So when I changed the
food, that was after the lockdown. So the lockdown
happened. We were two or three days into what
does work look like? What does home look like?
Everybody figuring that. out when I said I'm
going to use the time to try and do this um this
dietary thing with uh with William and I'm going
to cook for all of us so we still had that period
of time where he was quite dysregulated within
that week of it coming down he was still having
the online contact with his teacher and you know
so yes there is a there's definitely a crossover
here what what is undeniable was the The change
in his bathroom habit of running to the bathroom,
not being able to leave the bathroom, and it
clearly was distressing him. So that's probably
the bit that I would say was solely addressed
by food. The anxiety, we still see it. It's not
gone. It's just managed. We help him with the
tools to manage the anxiety. And the anxiety,
I would say, has reduced because he is out of
the... testing environment that creates the pressure
so one thing was about his gut bowel behavior
so i think you know if you're seeing that and
you're doing that you you know that that's a
good thing to that was very much about that and
you you could definitely see the links between
i don't want to go out because i might need the
bathroom and i don't want to be here because
i might need that anxiety i'm worried about somebody
Inadvertently, somebody had said that, oh, he's
had a terrible incident in the bathroom. And
of course, he's taken that on. It's like, terrible?
I'm terrible? There's something terrible about
me? Because it's literal, huh? It can be such
a literal receiving. So actually, his gut health
and anxiety and schooling, it's hard to unpick
it as separate because it's all this jumble of
anxiety, self -esteem, gut health. it was actually
because the gut health was going so well it was
one of the reasons one of the other reasons we
didn't want to return to school because nuts
became quite an important part of his diet and
it can't be in that environment and you think
this is really this is now really challenging
so we're making dates and nut bars because he
wasn't having the wheat the usual kind of biscuit
or anything else we weren't having any of that
and i didn't want the gluten -free stuff from
the shop because it is as you say it's still
highly processed and i don't know what's in it
and so for that first year um i was pretty fanatical
about what was in his diet because we were seeing
a much calmer happier person that was able to
tackle things outside of the house so initially
i think that leaving the house was leaving his
private bathroom now that i need to be in here
for as long as i need to be in here and i don't
know what's going to happen and i can't seem
to work that out and i don't like the smell and
i don't like all the other stuff that comes with
that the hand washing rule either i don't like
that very much i'm like yeah that's essential
so you know this one we're not letting go of
there's a lot of anxiety around all of it isn't
there i suppose your home in your in your safe
environment people around you that understand
you that won't rush you that won't asked to do
anything that you can't do like physically do
then that is going to ease your anxiety isn't
it and therefore and it's not measured in the
same way at home is it's not measured in the
same way he of course he does you know his workbooks
and bits and pieces like that but he tests himself
when he's ready to test himself very different
and he's comparing himself to himself and not
his peers which i also think is really it's been
really helpful to him I mean, I heard him talking
to his peers and friends at Rugby and Scout and
it's very much sort of, that's fine. I'm sorry
you feel like that, but I know me. And I think,
yeah, that's fine. You know you. I know me and
this is better for me. Great. Oh God, if we could
all do that, it would be a much better place.
He sounded quite powerful, bless him. He really
did. He sounds like a wonderful young man. Yes,
he does. He really does. I'm completely smitten.
Completely smitten. I just need it as a challenge
to work out where are we? What's this mean? What's
this new language? And what's this new way of
being? And it did, in the end, it did require
me to give up. Committed. You committed as an
entire family to... make a massive change you
know food's a really social and important part
of our human existence and socially and everything
and it's a huge commitment to step that back
and work that food together and i suppose the
pandemic let you do that didn't it because you
know there wasn't any social invites or gatherings
so you could you gave me a preview It gave me
a preview of the possibility. When we left, we
didn't know how we were going to do that. My
husband and I have always worked. We've always
worked in services like government services.
We've always worked there. So, you know, how
do you go from that? Having a regular and consistent
salary? Well, we'd worked there for long enough
that we weren't a million miles away from a pension.
And we thought, can we hobble over these next
few years for the few gains that we've made in
lockdown? Could we make it a lifestyle? Could
we actually do that? And so we started to look
at other ways that you could fund a change like
that. How do you do it? How do you take all of
your assets, put them together, and look at how
you can redistribute those to make it viable?
For us, that's what we had to do. We rented out
our house. Parents, in your position, it's just
not a choice. No. As in, lots of parents are
ought to have... their children at home because
they cannot cope in school. So it's not even
a logical financial choice. They just are home
and you just have to manage that because the
school system isn't meeting their needs. I'm
looking at the progressive education space and
there are definitely developments afoot. So I'm
really hopeful that we're crossing that area.
I do believe that in school we're doing... you
know, the very best they could with what they
had. And it just wasn't possible for, you know,
inclusion. Sometimes we focus so much on someone's
absolute right to be included. We don't actually
ask them if they'd like to be. And that sometimes
can be really, it can be really challenging to
put that in the hands of a child that's saying,
I can't be in this room. They can be in the same
room as the others and they're very much included.
But it doesn't mean they're thriving. It doesn't
mean they're learning. Exactly. And everything
that he loves isn't on a current curriculum.
We really are at complete odds with what's happening.
He's still learning and he still loves learning.
Yes, he's accessing it through different methods
in a different way. And it is just very much
led by him and supported by us. We become like
coaches and support people rather than... regular
parents, I think, at that particular point. It
definitely does change the dynamic, doesn't it?
And the relationship and your role in the upbringing
of your child, for sure. You wear a lot more
hats, I think, as a homeschool parent. One of
the things I really felt like at the very beginning,
I really believed, oh, I don't want to do this
because I'm nervous about being his everything.
Really. Sounds crazy. I think that's potentially
harmful for him. As it was, I was, but only for
a short period of time, only until he was stable
again. And once he was stable, he was happy to
explore. And we just, we modelled what it was
to explore and get things wrong. And say, you
know, yeah, look at me making these mistakes.
Whoops, it's fine. The more it's modelled, I
mean, modelling is such a beautiful tool. an
affirming tool of teaching those things isn't
it if we're doing them ourselves if somebody's
listening to this and is on that cusp of you
know medication and all these kind of conversations
and have paused to listen to this podcast what
would you say to them about their journey and
and how um and what your advice i suppose would
be on who they include in order to navigate I
think you hit the nail on the head there. It's
very much their journey. It won't always look
like somebody else's. And in fact, there may
be similarities, but it's not going to look exactly
like everybody else's. But if you're noticing
some of these things, then find the people that
are going through it and don't be afraid to try.
Maybe don't attach too much to the outcome, as
was an exploration of would this help you right
now? Would this support you? No? Okay. We ditched
that one and find that. That works. Okay, tube
body works. Brilliant. So tube bodies are great
for us. Dummy doesn't work. This works. You know,
it's that personal journey. And it is the, I'm
really grateful for the investigative background
I have to be able to genuinely take a step back
and have a more eagle -eyed view of what's going
on here without judgment. And that's the great
thing is if you're not aiming for a particular
goal, if you're not attached to the outcome,
you can remove judgment. really easily and not
worry about it to say okay let's just see what
this is revealing you can't be disappointed either
because you haven't set yourself up like ultimately
we don't know we are literally investigating
i think that's in really really wise advice and
that covers all topics and all areas of parenting
and teaching is that we need to put our investigator
hat on and experiment and always test our own
theories it's all well and good coming up with
a million things of what we could be doing and
saving all these posts on instagram what we could
be doing and reading all these books about what
we could be doing actually sometimes you just
need to test your own theories and in a controlled
environment which is exactly what you did whether
it's got help or not you know even it's sensory
whatever teaching Organise your controlled environment
and then experiment. Test your theory. Does this
work? How I, you know, how it seems to be. Okay,
that does. Okay, we'll keep that. That doesn't.
And work out what's best for your child or your
student. And that not yet thing, it's so powerful,
isn't it? It doesn't work yet. But actually he's
going to access that a little bit later and it
will work. One of the good ways. Yeah, he'll
come across it himself. And you think. We've
been talking about this for three years, but
here you go. You've found it yourself. It's a
self -discovery. So you're really there, aren't
you? You're running. Brilliant. Off we go. That's
a good moment as a mother to see that and witness
that. Yeah, it's been amazing. It's been an amazing
journey. I'm happy to talk about it with anybody.
And that's why we have our... How would people
find you if they did want to extend this conversation
with you or learn a little bit more about you
and your story and your journey? Amazing. So
we have a website called Gemini Directions, which
is a new way of working for us that came up.
My husband concentrates very much on physical
well -being and I concentrate on the coaching
mental health well -being. But on the side from
that, we have a safe circle space for parents
that are exploring neurodivergence or difference
or a child school refusal. It's just a safe space
for them to be, come share, get rid of it so
that. You can put it in the space that says,
you know, this is overwhelming me right now without
feeling bad about it. Because we all need that,
don't we, as parents, when you're exploring it
too. The idea that you've got this is sometimes
lost on you, is that actually this is hard right
now. And I've tried 20 things and none of them
are working. I'm starting to lose hope. That's
okay. You know, you need a space at that point.
I think we can sometimes lose focus of the fact
that the parents are the first support for this
child. And then they've got all these other people
around them to support their learning. And we
can all move with the greatest of intentions,
but sometimes it's just not happening. Having
a safe space where you can put that and say,
right, it's not happening. If you want to, you
can ask. Anybody else got this experience? What
did you do? Are you happy to share? Or could
you just keep this for me because I don't know
where to put that right now and it can't be around
my child. Yeah, it can't be around my child or
it can't be around my extended family members
who don't understand it or it can't be around
the other professionals because I'll feel judged.
it's a safe way to just leave it yeah just leave
it and you can come back to it if you need to
it's uh but that's it's completely free it's
a circle space that's developing on the website
at the moment so you can just jump in and uh
and have a uh and have a share because it's also
hard to be out sometimes you know depending on
the small wins as well so many parents end up
in my dms because they know i'll get how big
this small win is yes and they can't share it
with anybody else because they don't understand
the significance of it so it's every it's all
of that isn't it absolutely it's the whole thing
is i just want to say this week he sat at the
table yeah you know he sat at the table with
the family the weight of that and the enormity
of what that means You see the other mums smile.
The other mums and dads just smile and you think,
yeah, they get it. You know, they get it. This
is huge for me, you know. I can do it. Or he
actually would like to go back into the school
place. Brilliant. What does that look like? You
know, where are you? It's... I think it's important
that we have that kind of support as well because
it was definitely a little lacking on our journey.
We had parents that were really, really well
-meaning and everything else, but that safe place
that you could just go, I just need to put that
there. Somebody completely not in your circle,
not related, but that safe person that can...
just be a listening ear sometimes. That sounds
really wonderful and incredibly needed. I'll
make sure that all the links to all the things
that you've just suggested is in the description
below so that if people are listening and want
to find it, then it will be down there. Thank
you so much, Victoria, for this really... enlightening
conversation thank you so much for sharing so
honestly and openly about yours and your son's
story and journey and I wish him every luck in
his life it sounds like he's an incredible young
man and has a very bright future ahead of him
so thank you so much for yeah sharing your story
and I really hope it's helpful to those listening
thank you thank you very much for having me I
really I hope it helps I'm sure it will thank
you