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.
Hello everybody, my name is Jordan and today I am going to be joined by Joanna Grace from Sensory Projects.
Hello Joanna. Thanks for having me. I think I last saw you in 2010, maybe 2011. Wow, oh gosh,
I feel old, doesn't it? Yeah, it was in London and you were doing a Tory show with Flo Longhorn
about sensory stories. Yes, yeah, Flo's forums, yeah they were ace. Yeah, fantastic and do you know
what, I was so blown away, I mean just blown away by the two of you anyway, but actually it was when
and I've always remembered this and I always use this for when I'm thinking about making stories
and creating stories which I do a lot. You had one about a tattoo and you used a tattoo gun,
with your people and I just loved that because before that I'd always used baby stories and
fluffy soft things and nursery rhymes and that's fine for some, but for me as a new teacher,
as a new SEM teacher, it was a light bulb moment like, well yeah duh, of course you can do that.
It was one, I was trying to get an adult care audience interested in sharing sensory stories
of the people they support and if you sort of go in to adult care and say you can tell them stories,
they're like yeah it's a bit big and I was trying to think how can I make a sensory connection
to the staff who support in adult care and tattoo guns is a really good way of doing it because a
lot of people have tattoos and they're like yeah that was a sensory experience, I'm there and my
friendly tattooist adapted, that gun has tattooed me and he adapted the gun so that I can use it
with a, I think I can put a biro in it or something like that so I can write on your skin but all the,
apart from the piercing your skin with the needle aspect, the butt and all of that is the real
sensation, it's a good one, I like the tattoo sensory story. Pete Wells has got, we're going on
a pub crawl as a sensory story. Why not? You don't have to go on a bear hunt every year for life,
not compulsory. You don't, you absolutely don't and then that brings me on to your beautiful
story, sensory stories as well that you have created that again are so accessible for all,
they're finally not yeah, infanticising actually at all and that's why I love them. It was always
one of my worries when I was sharing stories with people who carry, in the UK they carry the label
for animals to learning disabilities, you don't know how much somebody's understanding and I would
hate to be patronising you if you are understanding but also I would hate to be offering you something
that you can't connect with unless you have an understanding and if you start at a sensory level
and work up from there, I hope that you can genuinely include everybody. So lots of stories,
you know like the way pantomimes are written for the children and the adults,
right, a double mix, like there's a story called Puddle which is about somebody who dives into a
puddle and then has an adventure at sea and at the end of that story there's a woman waiting
on the pavement for you and if you're a child reading that story that's your mum waiting on
the pavement but if you're a teenager it could be your girlfriend or it could be a love interest
because there are different ways of accessing the stories, I'm hoping, I hope that they're good for
everybody but my stories all have a particular tone, I'm interested in factual narratives so I've
got like science-based ones or history-based ones and then other sensory story authors so like I
mentioned Pete Wells, Pete Wells' stories have a very particular tone, much more anarchic than mine
and Vicky Nabin writes in Rhyming Couplets which is about, I don't know how she's called, but yeah
there's lots of different ones out there now. If I think if you met me, what's that, 14 years ago?
Yeah so originally there was just five stories on the sensory projects and we're over 30 now.
Amazing, amazing. So what do you think, what do you feel makes a good sensory story?
Two things, the most important thing is the sensory invitation because I see a lot of stories
where people have just gathered things from around the room like a cuddly toy, a water spray bottle
and obviously being sprayed with water is an interesting sensory experience but it gets done
a lot so I don't know how interesting it is if it's something that happens to you on a daily basis,
you're like if you attend a mainstream school you can go through your whole school career without
a teacher squashing you in the face with water but if you go to a special school it happens all the time.
You want something that's really really good sensory and so I always imagine, I don't know
if you can do this, if you imagine like your brain and your senses as little characters,
if you took the brain away and just left the eyes, would the eyes be interested in looking at this
thing? You know it's the reason that you're looking at it is because you're curious or because you
know that's the main character of the story. If it's coming from an intellectual start point
then I haven't got complete sensory so I want something that draws the attention of a sensory
system alone or fills the whole sensory system so quite often I'm holding up coloured sheets of
cellophane because when you look through cellophane everything that you see changes so it's a massive
visual experience you don't need to understand it so you want really good sensory and then you want
concise text. So the rule of thumb is eight, ten sentences for a sensory story so quite often people
adapt children's books like you were saying but actually there's a lot of text in your average
children's book so that it's like a kind of high-Q art form to convey a story in just a few sentences
together those are my two good ingredients to a really great sense.
I love that and that is actually something I am yeah both of those things are things that I am
incredibly guilty of actually and you saying that makes it just makes so much sense because
it has to so often we forget about the sense of smell or like we're doing sounds and visual
or textures but what about the sense of smell? So there's two things there so the concise text
the stuff that I say I'm not I don't just um it's not coming out of nowhere so I'm pulling from a
different research the concise text stuff there's loads of research that shows that we all take more
information when less is said it's why our politicians speak in soundbites we understand
more when people say less and then there's a whole load of research done on teachers
where they go teachers talk too much they just talk too much so the concise text has value for
people who have full intellectual capacity but also if you're somebody who has very little
intellectual capacity for whom the sensory aspect is going to be more valuable that text that comes
before the sensory aspect is the thing that tells you something's going to happen that you hear a
particular set of noises and then somebody offers you a smell if I just offered you the smell you
don't have chance to orientate the sensory systems to that and actually I work with people who that
orientation of their senses is a thing that they have to properly do like obviously we're all doing
it all the time but like I know somebody who can see and they can hear and they can feel but they
can't do them all at once yes okay so if they know if I make a noise that is my sentence and that
noise lets them know that what's going to be happening next is something that they're going
to be looking at they have chance to kind of go okay I need to get my eyes up and ready and then
they get more at it so the concise text is really powerful for the people who maybe aren't understanding
it at all and it's really powerful for the people who are understanding and then you mentioned
smell which is like a um it smells one of I so I run to generally run to seven senses on the
sensory projects although once you start dealing in subconscious senses it is like gateway drugs
and you end up sliding into them all so I'm up to nine now but I try and keep it to seven but smell
is a really unusual one because it's the only sensory system processed by the limbic brain
which is your feeling brain okay all the other senses are processed by your thalamus which is
your thinking brain and so you can kind of you can you can feel it in the way that you think
about things like if you think about uh like a famous painting like edvard munch's the scream
or van goff's early night or jerry halliwell's union drag yes you can see it in your it's not
like you're hallucinating it but you can see it in your mind's eye you can get stuck in your head
like you can think songs if i was to hum a few bars of baby shark when everybody's done having
baby but you can't think smell no you feel and so when you ask people you're asking emotional
labor of them and it's a big one so you want to go really cautiously on this
um and it's so true isn't it because it can be really emotive smell uh sometimes you won't have
had a food for ages and you've forgotten about it and actually you'll have it and all of a sudden
it will take you straight back to nursery or take you straight back to your grandma's house or
whatever it is people keep jumpers and cushions from loved ones that have passed don't they and
i feel like it's incredibly emotive and sentimental actually is that sense of smell isn't it yeah
sometimes if you're working with people who are already stressed or who are overwhelmed by stuff
then adding smells into that is a big ask you go to the court yourself i'd go like one smell in an
hour and i'd be if i was brave enough i'd be asking staff who wear strong perfumes to wash them off
but i'm not brave enough well actually i have had that i have had um students that haven't wanted
to work with certain teaching assistants and when it quite came down to it was because of their perfume
yeah yeah yeah yeah a lot a few times yeah so you mentioned seven i think most people say
but there's five senses yeah famous five conscious senses um and actually hidden in those are a lot
of the subconscious so like we have a sense of temperature and as tactile sense and we cluster
them all together as touch but it's possible to be able to feel texture but not be able to understand
temperature it's possible to be able to feel temperature and not understand texture so it's
a bit like deciding how many constellations there are in the sky it just depends how we group these
neurons but there are 33 sets of neurons that control your senses so arguably you've got
33 sensory systems but that would get a bit much because in a sensory story you only get eight to
10 sentences so seven is manageable eight nine is getting a bit too ambitious really um but my seven
i do the famous five and then quite like often you're working with somebody who is missing one of the
sensory systems or can't eat and you lose a few so it's worth having a couple of backups i use
proprioception because your awareness of where your body is in space and it's a weird one to think
about but most people have had an experience of not having proprioception just as they're waking
up or falling asleep and they get that sensation of falling do you ever have that yes there you go
and what's happening is your proprioceptive sense is falling asleep slightly before you
or waking up slightly after you and you just have a moment where you don't have an awareness of where
your body is in space right it's a really unnerving thing and people can have differences to their
proprioception in the same way they can have differences to vision or differences to hearing
and so if you don't have full proprioceptive capacity and i'm actually somebody who doesn't
you don't fully have an awareness of where your body is all the time and that's slightly unnerving
yeah it's a stimulation that tells somebody where their body is is a really good way of supporting
the proprioceptive sense so things like um compression wear clothing and the weighted
blankets and all of those things that are so popular in the sensory market that's what they're
doing they're giving you information about where your body is brushing massage all of those things
yes vibration is a great one ways of offering for proprioception and then my other one i do
is your vestibular sense which is your sense of motion and balance so if you can incorporate a
movement in your sensory story it has to be a movement that involves the head because you're
the sense the receptors to your vestibular sense are in your inner ear so it's no you're just waving
your hand that wouldn't do it but anything that creates um like an up or down or around or around
would offer stimulation to your vestibular sense and be another way
children in tents would you spin rock shake you know if if if they can't do that i mean is that
what it looks like yeah yeah and actually so your senses are a part receptor organ part your brain
understanding the information from the receptor organ so the only time we really give that any
credit in kind of day-to-day life is when we give babies black and white picture books because we
recognize this is a baby that can see but they're not seeing in the same way that i'm seeing and
what's happening is it's partly you know the receptor organs picking up the information and
partly your brain making sense of it it's about 25 percent pick up 75 make sense of it and so i
have a friend who is blind but her eyes work perfectly right but her brain can't understand it
and a lot of the people that i work with maybe have the receptor capacity it's taking them longer
to put together this information and so i often talk about there being a curriculum of the senses
and i have a course called develop your sensory lexiconry which is me teaching that curriculum
of the senses but there are things that it is easier for your senses to do and things that
are harder for them to do so like the black and white picture books for sight that makes sense
doesn't it you pop out you're getting all this visual information it's easier to figure out
that's black and that's white than it is to figure out that's peach and that's lemon yellow
like sequence of things that you're learning and with regards to your vestibular sense that
sense of motion and balance the early way we learn about that sense is through bold
directional movement so you think of what we do with little babies we rock them side to side
push them forwards and backwards in their buggy and then we pass them to their daddy
and they lob them into the air like it's bold direction movement and if you're somebody who
requires supportive equipment like if you're in a funky wheelchair you probably spent your early
years maybe in a bed maybe you were in intensive care you won't have had as much chance to have
those bold directional movements so you won't have had the opportunity to make sense of that
stimulation and you might not be processing it fully yet and so by giving you those opportunities
to access that movement you can give an opportunity to help somebody understand their messages coming
from their senses and then that gives you more access to the work those two i'm caught up an
eavesdropper on conversations where people go would you prefer to be deaf or would you prefer
to be blind like there's a hierarchy and actually if you interjected in those conversations and said
would you prefer to be blind or would you try to lose your vestibulism most people would go
oh my vestibulism i've never had it but both of those senses your appropriate
section and your stimulation are fundamental to your capacity to move and if you lose either one
it's total paralysis and so altering stimulation and support movement and coordination and all of
those things and those two are definitely being missed in sensory stories because in my in my
from my experience of sensory stories looking around and working with lots of other people
often it's it's texture it smells it's tastes even sometimes but they're all quite passive
they're still and and uh city they do lots of other activities that are moving but i feel like
maybe often that gets forgotten when it's a story maybe something in our brain says sit down for
story time it's still and it's listening and it's passive and actually that's not the case
and it makes so much sense from what you're saying that of course that's not the case
that tattoo sensory story that you were talking about at the beginning has a repeating line for
it i think i'm trying to remember it now there's no one else who moves like me it's just the way i
roll and when i'm telling it in a group we sort of go around and do the story bit and then that the
there's no one else who moves like me it's just the way i roll we if we if people are being pushed
in their chairs we all sort of wheel around in a circle and spin and if people can move themselves
it's like a chance for a little boogie in the middle of the story it's good one yeah that's
a great one especially in the middle of the story because that's when you need it yeah
so my book sensory beings sensory beings would be that development of the senses it's not a
taught curriculum thing it's just that's my way of thinking about it as a teacher as i tend to think
because it's got that progressive sort of step by step aspect to it it automatically gets called
a link to that i have a link to that and your textbook and your a couple of your other books
as well so what we'll do is we your youtube is so yeah if people are on youtube i've put up a
load of free content recently so you know in when lockdown happened and everything went online and
things like that i ran some conferences that were focused on supporting people with profound and
multiple learning disabilities or people with profound intellectual and multiple disabilities
and there were loads of films in i think we did four conferences there's probably 200 films in
the conferences overall and about 50 of them have just gone up on youtube for anybody to watch and
there's some there's some absolute corkers they're gorgeous i started yesterday and it's quite funny
actually because one of my parents in my class sent it to me yesterday not knowing that we were
having this chat today and said do you know about Joanna you should really watch this i said oh it's
funny you say that um i'm chatting with her tomorrow but um so i've started yeah i started on
them so yeah and they are so powerful found disability netflix on there at the moment
because there's so many of them yeah absolutely and it's such a great place to start so if anything
Joanna Joanna is saying tonight has kind of sparked your interest or you know got you thinking about
how you could be doing things better for your child or at school or wherever you work they are a great
place to start because it's all there isn't it free of free access it was it was the first one
because i've been doing a phd the past three years and the first one was me stuck with something i
was supposed to be writing for the doctorate and just think and i've been reading all these
research papers and i was just thinking it would be so much easier to talk to these people than to
try and understand what they're saying and then i i went a bit kind of daydreaming in my head and
i thought oh i'll just ask people to talk to me and i sent an email to it was like off the top of
my head 40 people i thought it would be really interesting to listen to if they were going to
talk about a disability that would they would be more interesting to listen to than the research
papers that i was reading and i didn't i sent it as an email but i didn't because what i was supposed
to be doing was doing that work i didn't really register that i'd actually sent it and then i
got all these replies back going yeah i'll do that oh oh gosh and then it kind of happened to me
and then i got too many videos to fill up the first one so then the second event happened and
then as that one was closing people were like when's the next one and you're like i haven't
really planned to do it out of hand they were marvelous they were just yeah they were brilliant
and and it is so much better well it's so much easier to read that's how i process information
i'm learning so much from doing these lives rather than reading and watching it feels so
interactive and i feel like well it's my private like free ask questions you know i like get to
um ask all these experts and questions i'm learning so much my um practice has improved so much this
year from being able to talk just have a conversation but it's a nice thing about the
online world isn't it like i've always used my facebook photo albums as like archives for people
but things like there's lots of podcasts around now i get i get interviewed on them i'm not
like organized enough to run one but things like the um born at the right time skies we're under
podcast with regards to found disabilities so much insight and that you can get that you like you can
have access to that for free um is yeah it's really good yeah and and social media as a whole as well
you get all direct access and upstate access on all of these amazing updates and practices and
interventions and and i feel like it's really pushing the affirmative agenda forward i mean
god you were doing affirmative practices decades ago and i think i feel like only just everyone's
kind of trying to catch up i'm standing on the shoulders of giants you saw me present with flow
so i went i was on the road with flow for a couple of years and flow was my sensory engagement hero
and the first time i met her i was co-presenting one of her events with and it's just yeah
extraordinary what people have done before us i think quite often people are landed in classrooms
and they don't have the time to go out and find out about everything that's gone before and certainly
where i'm basing the work i do like i base the training days that i run as the sensory projects
on research i said it's it's difficult going to read research but it's so worth doing like there's
so much good stuff in there and i kind of view it as my job to read i do a lot of long train journeys
i sit on the train and i read it and i figure out what part of this would be useful to people
i often say to people at events if i read a research paper that says they had like a specialist bit of
equipment that cost a couple of thousand pounds and a quiet room and three members of staff and
they did like there's no point in telling anybody anything about that because it's not but i go
through it and i pick the bits that are going to be useful and then i try and package them up in
ways that are easier to digest than a research paper and that's that play between there's so
much support out there and if people are in classrooms or care settings or at home in their
house and they can find some of it like you can send me a message on facebook anytime day or night
and there's people out there who will who will vouch this i will write back i'm probably on a
train i'd rather talk to you than read my research paper and there's and there's loads of people like
me out there who will back you up and support you because the structures and systems that we work
within or that you have to fight against often do the opposite to that yeah yeah yeah and i feel
like the people that are in this space and choose to be in this space are doing it because they
genuinely want to make a difference you can only make a direct difference with people you actually
can have access to but actually that's not the case anymore you can make you can impact and influence
and make changes with people that you will never meet it's incredible yeah yeah the the online world
gets a lot of stick but it is a marvelous it's yeah it's a marvelous thing i've done training in
singapore and india and uganda through the little window of the online portal so yeah i know what
you mean yeah it's incredible sorry i don't know you were a special education teacher is that right
is that how you started well sort of um i i my background in inclusion probably predates me
because my mum and my grandma both worked towards more inclusive society in their own way and my
mum's ambition was she wanted to my mum and dad met at university and my dad's ambition was to
build a boat and go sailing around the world and my mum's ambition was to convert a double deck of
bus so that it could carry people who use wheelchairs and take them on holiday to italy
and i grew up on a boat that my parents built by hand and i think i'm my mum's bus like i think
i'm i'm what became of that ambition she never got to that but i've been a special school teacher
i've been a teaching assistant i've worked in a variety of roles within education from teaching
assistant to inspector looking at how to support children with additional learning needs access
education and then since the sensory projects i the youngest person i've worked with is a day old
and the oldest in their 80s and i get to work in all sorts of different places now like i do a lot
of heritage settings has been wonderful because heritage places have all these gorgeous stories
that they want to share with people and i'm like you could do it in a sensory setting as well
she made me the smell of george and sweat at hampton court palace for a sensory story once like
the things you didn't think would happen but i've also been a foster carer for children with complex
disabilities and i have my own children so i have a neurodivergent child and a severely neuro typical
child yes um yeah and and i feel like that then when you're talking you can uh you can
relate to and others can relate to you because what you're saying is realistic
like you were saying well quiet rooms and three adults it isn't realistic you know that because
you've lived it yeah that's what i do i don't um i none of what i put out this training is based on
anything i've done i was a fairly all right teacher and i'm a fairly all right parent but
i wouldn't want anybody to base anything they did off stuff i did in my classroom or stuff i do with
my children i go through the research and i kind of filter it through my experience so it's that
experience that i'm using to judge is this worth telling to other people and so it's it's not a
perfect filter but it's yeah that's that's what i'm bringing to it it's bite-size and it's realistic
what are you working on at the moment what are your projects for me so um for the past three
years i've been studying for a PhD in identity and belonging for people with profound intellectual
disabilities and the big thing that i've done there is work out a way of doing research with
people with profound intellectual disabilities and it's one of those things that at face value
seems like it wouldn't be possible because research is inherently an intellectual pursuit
and this is a demographic of people defined by their lack of intellectual capacity but there's
little moves and things you can do and in two weeks time just over two weeks i will sit my
final viva which is like the big exam that you do at the end of the PhD and it will be decided
whether i have done it or not but hopefully i will pass that viva and then i'll be doctor joe
so that's what i have been working on and until i've done that viva i must not work on anything
else because it's quite a big deal sitting the viva but i am in my head and it's funny that you
started this by talking about me and flow because flow used to run flows forums i don't know if it
was a flows forum that you saw us at or if it was one of the courses we used to do courses together
but flow used to run like maybe once or twice a year flows forum and she would invite all sorts
of different speakers it's a bit like the pmld conferences that i ran online but it was in person
she would invite all these different people who would do new stuff about this world or who were
doing new things or she'd just have everything and it was fantastic what you'd learn from the
people that she platformed it was also the opportunity for those people who were sitting
as delegates in those rooms to meet each other and to meet people in other schools who did a job like
theirs and it's one of those things quite often especially if you work with the people with the
most complex levels of disability quite often you're isolated in your practice because you'll be
like the only teacher in the school that does that or you're the you know the specialist support
person who deals with that particular person and so the chance to bring the community together
was really really valuable and so i'm daydreaming about not flows forum but joe's forum
and it would be i'd like to do one on voice what voice means to people with complex disabilities
and bring insight from research in an accessible and friendly way and all those loving people
who do important stuff but i don't know how to do that i'm good at reading the research
yeah yeah i'll put that on her to-do list i don't know how you book the venues
how do you do the catering all of that isn't it because you can be really excited about your
specialist subject or your interest but then now you've got to market yourself and you've got to
book venues and you've got to design posters i just want to talk to all these people i do it small
scale for the lexican and i've run i've run the super sensory lexican every year at around about
my birthday because it's my favorite thing to do and i book venues for that and i sort food for
that and hopefully everybody who's been on a lex had dinner and was sat inside somewhere for it
that i have oh i remember booking a venue i think it was in bristol and i do a thing
so i want to book ethical venues i've always booked places that like do something nice with
your money rather than booking just your standard corporate hotel so i end up in these weird
improvised spaces and like this particular venue you paid you hired the hall space and then i think
they ran a super kitchen and an initiative for single parents all of that was what was being
funded by your higher fee so i was like great definitely the venue i want and it marketed as
an ethical venue so it's like perfect didn't even have to google belong got my venue ordered the
dinner got there at eight o'clock in the morning for a court for a conference that starts at nine
o'clock and obviously i'm paying by the hour and this is not a get rich quick strategy this is a
way to have a very happy and fulfilling life but i'd only paid for one hour before my delegates
arrived i was like i can set it up in an hour it'll be fine i got there and it was a nightclub it
was underground it had no lights no tables no chairs it got like sticky floors and the toilet
in the corner and i'm there eight o'clock in the morning and i've got 30 delegates arriving at nine
o'clock and you're just like so maybe if i run a forum i should just book a hotel
or visit a cafe next door and beg chairs off them i found fairy lights from my boxes of
sensory resources and by the time people arrived it looked like a little sort of um like a little
underground cave like a sort of place we thought oh this is clever it was very on brand it was all
improvised the stickiness wasn't really needed oh that's brilliant but it happens and you know
you just got along with it haven't you just got on with it i feel like your time being a foster
care and a special education teacher probably prepared you really well for just off the cuff
just thinking on the spot you know the people who come on the lex are also like that as well
so they're totally willing they're far too late actually if they'd arrived at the time they'd
have probably helped you out and you know people did yes yes early delegates did help carry the
chairs yeah we found planks somewhere i don't know where we got the planks from but all our tables
i love it and why not and actually what a great icebreaker oh somebody in the chat was at the
venue i hope there was one person who arrived and they came downstairs to the underground
cave that i'd built for them and they looked in and they went my friend is claustrophobic i'm not
sure if they're going to be able to come in on the dot they survived yeah that's brilliant
i feel like i'm um i'm kind of following in your footsteps a little bit because i've also been a
foster carer and special education teacher and a teaching assistant i know i obviously need to
start my own research i'm really excited to see the impact of that because actually the idea of
belonging and being included in the research and having a voice within the research and tapping
into that is incredibly needed and i yeah i'm really excited to see actually what impact that
has yeah i hope it will have some impact it's definitely a thing i'm doing it is a survival
process of an achievement yeah but i mean it's it's needed it's really needed everything you do is
really needed is what i wanted you on here i think it often when we talk about research it often
seems like a very sort of dusty you know shelves and libraries out of touch thing and especially
when you hear about research being done that does seem so fantastically out of touch in my
quiet room with the three members of staff type of stuff but the risk of not being included in
research or not having a voice head in research is huge just from like a simple um policy level
using out the government officer who's just been put in charge of health care or has just been put
in charge of adult care or has just been put in charge of education what they do is they go okay
we've got to decide what we're doing what do we know about this and they look for what we know
as a nation and what we know as a nation is what our research sets so they go and find the people
that know stuff that's the researchers actually they probably don't they'll send some sort of
diversity who couldn't afford to work for a year go and find out what we know about this what do we
know about teaching children to read go and find out and that 20 year old has to go and read all
the research that's been done on teaching people to read and then they write it up as a summary
and they come back to the ministry they go this is what we know about teaching children to read
and if people with profound disabilities aren't even there in the research they won't be considered
on the policy table they don't exist you know so just doing research that involves them
in some way because it it gives them a presence in those spaces
Absolutely and I feel like it's it's lazy to assume that you can't because there must be a way
there must be a way and and that's what your research proves yeah and I suppose at a classroom
on ground in practice level we could also be doing that couldn't we we can be including
these people these children that we care for within EHCPs within the IEPs within their reports
within their meetings with parents it takes more thinking about to find their voice and
include them but but we that's what we should absolutely should be doing for exactly the same
reason that you're saying I feel like we should brainstorm what I do after PHD because you started
with flows forum and then we were we looked back around that and then that's my thought for the
first one if I ran one it would be about voice because that's the subject that's looked at in
research and obviously people think of voice as being the sound that I'm making with my mouth
but within special education we also recognise voice in sign in symbol in like multiple other
ways but there are more extensions to that and more extensive ways of understanding voice and
quite often schools have got some sort of pressure on them to include people voice so like I saw
a write-up that said we have successfully included the children with profound intellectual disability
in the student council and me reading I was like brilliant great how did you do that because I'm
looking to include people with profound intellectual disability in research how did you do it brilliant
and how they've done it was those children had been wheeled to other classrooms where they picked
up photos and they hadn't picked them up they've been handed photos that have been taken by more
intellectually able children photos of things that were of concern to them and then they wheeled
the photos into the room and that's including them that's just using them as a cart it's totally
spoken yeah exactly that yeah but but the sort of the galling thing is it it was published because
it is progressive they they tried it was a step being like oh but there's a few more steps we
could take and there's different ways of listing them there are so we are on the we're not even
on the first step let's be honest yeah well last saturday I went to a conference held by my local
mp ahead of the new budget going to london or that kind of thing that was last saturday and one of the
things that the main person at county had said Cornwall council actually had said was
was we have found the way to include people's voice and parents next to me were like fantastic
how are you doing this well we're going to use cymbals and then they went oh well my my child
doesn't use them they can't access it oh well they're going to use sound buttons and my child
can't do that and whose voice would that be and who's deciding what's on that sound button you
know these parents had such great I mean parents are incredible like they just are they they just
know and and then we're asked all these questions and she didn't have an answer and actually what
you were saying then just reminded me exactly if that is it's great it's fantastic that you
recognize that these people voices need to be on this document absolutely I think they've worked
out the how yeah they're doing that that's great that they figured that bit out it's just different
places in the journey isn't it and and being able to find out about the next bit would be really
good too yeah it's always felt really awkward on the pupil voice section when when I'm using first
person actually and sometimes and well often I choose not to use first person I say an adult who
knows them very well has observed that because actually we don't know actually how they are
feeling if they are happy in school if they feel like they're thriving if their mental health is
good we can make an assumption on what we see and what we know about them but we we we don't
necessarily know and and unless we we do we yeah work out that we can and it's I guess it's different
for every individual as well it's so individual isn't it like how to access access point there's
a researcher that I really admire who's just doing a PhD looking at the practice in frozen
light sensory studio so frozen light are a sensory theater company and they've been collaborating
with a team of people with profound multiple learning disabilities to create a new show
and this researcher has sat in on those collaborations and watched what's going on
and she published a paper recently and she was talking about just that issue and she said there
is a risk of their voices being dubbed over by the voices of other people and you think yeah even
even when you are the person who knows them the best it's still going to be a little bit your voice
comes through isn't it and and what you would want is for it to be wholly their voice and you're doing
like you would you would give it as much as you possibly can but that recognition that your voice
is not their voice it might be the best approximation that we've got but it's not their voice
it's worth it and just yeah just the straight writing in person first language it's just yeah
it's just a bit icky isn't it yeah the person who feels uncomfortable with that but the point of doing it was to
this is a sad one isn't it but they have been so objectified that the point of doing it was to
alert people to go actually this is a person who's got opinions and thinks things and feels things
and so there was a reason for it in the first place so one of the things you engage yeah absolutely
i think we need to everybody everybody that works with in any capacity of like if it is care or
school or home or whatever we all need to have the aim of listening and sharing views and their
their voice as much as we can but making sure that when we do it we're asking ourselves why and for
what benefit because it needs to be for their benefit it needs to be because they want to
because they're benefiting not to tick a box not to jump through a hoop not to like a bit like your
school council example is perfect for that you know was that for that young person's benefit
or was it for the school's benefit or or for their website or their lovely photos or whatever
i mean i can't question i can't answer that because i wasn't there but i certainly see it
in my own practice i just think i have to constantly question why are we including this
in that one oh why oh why and and is it for the child's benefit yeah the listening in different
ways the research that i was just talking about johanna rua she has an instagram profile and
we're on instagram up we put sensory i think and she has been recording information so when i did
my research i worked collaboratively with four young women who have profound most polemic
disabilities and after we worked together i would write out my records of what happened you know
like a diary write what what we did but johanna hasn't been writing she's been drawing what
happens and she draws in highlighter pen on post-it notes and so she spends time with these people
and all the time she's an artist so her highlighter pen drawings are way beyond anything mine would be
um she she does these little post-it note drawings and so the data that she has from her research
my data from my research is all these hundreds and hundreds of pages of notes that i then go
back through and look at what happened and analyze in all sorts of different ways her data is thousands
of tiny pictures on post-it notes and her data analysis was gorgeous because of course she stuck
them all over a wall and then you come around and you see patterns and you see scenes and i think
anybody who's worked with people with fundamental learning disabilities if you go and look at those
pictures and we'll find we'll we'll share the link to her post yeah um i bet you see things in it
that you know and there's no words at all but there is meaning there and there is something
communicated and it and it resonates and finding those different ways of communicating things and
understanding meaning because once you use language you tend to think of meaning as being a language
based thing but language is just one way of representing meaning so when you sort of
appreciate these other ways of representing meaning then you can start you end up i was
and and my undergraduate degree was in philosophy which i think accounts for a lot of these
but once you're thinking of other ways of apprehending meaning you can ask what is meaning
to that person meaning to me is a linear connected reasons language-based thing but what's their
meaning how do they experience their meaning how do they express their meaning and then what would
that voice be and you're off you're off into a philosopher's paradise yeah asking that question
even without an answer because that's just that we're asking ourselves that question constantly
i think is really good practice actually is what does meaning look like for this child or
young person or adult or whatever um what what does this meeting look like you know what what
does this what does the answer this question look like for this child it might not be an answer but
it's just asking yourself that i think is really good practice yeah yeah absolutely right back to
the beginning the sensory story oh yeah saying we do lovely sensory stories or is it actually
does this have meaning and purpose and is it engaging for this person because if it isn't
what are we doing i sometimes i see sensory stories being done like a like an activity out of a box
yeah i go what was it last time i saw one like a sensory story about autumn so there's a load of
leaves and there's bugs and there's mud and all great you know good quality good sensory stuff
and it's read out and then it's put away and then it's on to the next thing and like oh i you can
get it's not bad that's nice you played with some leaves and you've got some mud it's lovely um but
you can get so much more out of them and when i do training about them i do a day called ambitious
and inclusive sensory storytelling and i always presume that the people that i do that day to
know what sensory story is already i mean if you don't you would learn it by the end of the day
but the day isn't about how to write sensory stories or how to tell it's about how you get
more out of them because there are ways of telling them that just something like um considering the
processing time of people that that version of the sensory story that i'm i'm sort of i have got a
particular event in mind but i'm cobbling it together because i don't want to point at a
particular setting and say oh that was enough sensory story but if you've had a think about
what the processing time of the different people in the room is you might have somebody who when
you put the dried leaves in their hand feels the dried leaves straight away closes their fingers
around them hears the crackle as they close their fingers gets all that information and you might
have somebody for whom when the dried leaves go on their hand those messages very slowly start to go
to their brain and by the time they got like halfway up to their elbow the dried leaves have
gone on to the next person and so they just sort of very passive and that's one of these things
that you see these people who are very passive and there is research around the passivity of
people with profound and multiple learning disabilities that shows that some of that
passivity is physiological like if you can't move your arm you're not going to be waving your arm
around but a lot of it is learned and if the experiences that you were offered passed you by
before you had the chance to have them then of course you're going to be passive so adding in
questions about processing time can enrich how you tell the stories and how often you repeat them and
the ways in which you repeat them can enable two-way communication it's all these things you can tell
the stories about because obviously it's autumn so we're doing the autumn sensory story we're doing
the halloween sensory story we'll do a christmas sensory story but actually there's so many more
stories we can tell them stories about particular people events in their life stories to give them
access to new experiences and there's all this way like i'm such a fan of sensory stories that
you can just go into them and do some first understanding of sensory stories actually that
it was that it can give offer experiences or and support understanding of experiences or help
anticipate experiences that they haven't yet had access to for example i don't know going on holiday
on a plane for example lots of my children not only any of that my children have ever been on a
plane before so we're doing all these lovely stories about vehicles and planes it doesn't mean
anything to them unless they've actually experienced it practice you feeling it um like feeling the
vibration hearing the sounds you know being talked in or whatever it is sit laying back on the chair
it gives them that experience so that if we're then talking about an airplane in future or we do
another topic about whatever or they're about to go on a plane then they've got something to base it
on yeah you're totally so the original sensory story project was just five sensory stories and
i said at the start there's now over 30 published on the projects since 2020 i've been publishing
stories by other authors and my most recent sensory story by another author is by a canadian
special education teacher and it's called the family party and the purpose of that story is
to support people in going to parties that they might be going to go to and so it's all the
opportunity to rehearse the things that might happen to practice to work out how you're going
to cope with those experiences in order to build your capacity to access an actual party and so
yes exactly what you say and that thing about you might not have experienced it i worked with um
um somebody who worked so it was it was it was one of these magic of social media things somebody
was sending me messages backstage on facebook and i think i think the backstage of my facebook is
probably where i have the most impact in the world and she was she just sent me messages saying i
work in this place and i i've heard about sensory stories and could i tell a sensory story and i was
sending back yeah of course you can and she's like well we don't have any i was like you can make
them up and i'm sending lots of messages like that all the time so i wasn't particularly paying
not that i wasn't paying attention but i wasn't clobbing into who she was and what was going on
and then she started to send me pictures um and she worked in an institution in a country where
provision for people with disabilities is something that we would recognize 100 years ago
and these people in this institution she she she'd done she'd done a sensory story about going to the
beach and having your ice cream fall off the cone and she said and i realized none of them have left
the building they've not even been outside and then she set about figuring out how to get the
ice creams and so it was this gorgeous thing like from the sensory story to the real experience and
later on in my research there are photos of these complexly disabled people in the village square
covered in ice cream amazing yeah shows how powerful it can be right both sharing
from on social media but also by just giving it a go and actually are are asking these questions and
and um yeah trying it so i suppose i mean as we're coming to an end i kind of like to give myself a
challenge after every everything just because i want to improve my practice so i suppose coming
from this conversation tomorrow i'm going to be thinking a lot about the why you know why am i
doing this who is it for and actually what how can we uh what's happening before the event what's
happening after the event and just maybe giving it a little bit more time to to land and to see
where it goes rather than having too much of a plan in my head right that's over let's move on
maybe just letting it just settle and kind of giving it an opportunity to see what happens i
suppose is probably my challenge for this week if you wanted things around sensory stories if people
are doing sensory stories already then i mean the you know do an audit are your sensory is your
sensory stuff a really good sensory invite is it interesting to the senses or is it really
interesting to the senses or is it reliant on intellectual curiosity is your text concise
what what's your capacity to allow for different processing times and how could you set up that
group situation so you could allow for those different times so like if you're doing a big
group could you do it in small groups and rotate around do you have to do it in the big group
what about thinking about developmentally relevant sensory experiences so picking the
stuff that i can access at the level of capacity that i have of my senses what about telling
sensory stories about other things like i talk about how the stories that we hear when we're
little about who were like i i said i grew up on a boat and i always tell people i grew up on a boat
because it's one of my favorite stories to tell about myself but i've been told stories about who
i was on the boat and those little stories about two-year-old me that who i don't remember the
experiences but those stories that i've been told are part of my understanding of who i am right
if i've got an intellectual disability if i if i haven't got access to those stories in that way
can you tell me stories that tell me who i am can you tell me those stories in a sense noana
thank you so much i am so i've left more inspired than i even was 13 years ago when i saw you last
time and yeah i hope to see you in person again um i guess absolutely i'm really excited to hear
about um the impact from your research because i think it's gonna be really exciting thank you
so much noana and i hope you have a wonderful evening you too thanks all bye