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Hello everybody and welcome back to the Sensory
Classroom podcast. My name is Jordan and today
I'm joined by Marissa Webb, speech and language
therapist. And we're going to talk about AAC
and total communication today. Hi Marissa. Hello.
Welcome. Thank you. I'm excited to be here. Absolutely.
I am so excited to have you. We've been chatting
in the DMs a little bit about what we're going
to talk about today and I can already feel fire
burning in my belly about the topics that we're
going to talk about. Me too, definitely. It's
so what I'm passionate about. I mean, I think
you can see across all my social media, I'm incredibly
passionate about communication, but communication
done in a neuro firming way. And I think that's
what we're going to talk about today. So what
does that mean to you when I say talking about
communication in a neuroaffirming way? Some people
will be like, well, how can you communicate not
that way? So what does that mean to you? Exactly.
Well, that's really interesting because, so as
you mentioned, I'm a speech and language therapist.
So this is what I do all day long with children.
My favorite type of children are the kinds who
need that total communication neuroaffirming
approach because they're the most exciting to
work with. challenging, head scratching, all
kinds of just make your brain work and really
fun. But really, it's about honoring the other
person. So I know that sounds really sort of
big and profound, but it's also very simple.
It's just like allowing the other person to be
who they are and doing your utmost best that
you can to tune into them in whatever way they're
communicating. We do this as human beings. all
of the time. You're doing it right now. I can
see you. You're smiling. You're nodding. It's
all what we do all the time. And that's telling
me that you're listening. It's telling me that
you possibly, it resonates with you. But you
and I are communicating completely differently
in spoken language than many, many people do
communicate. Some people don't communicate in
spoken language at all. And we need to understand,
learn the nuances of how to communicate in many
different ways. is what total communication is
all about so i suppose let's start from the beginning
why wouldn't somebody be able to communicate
through verbal speech what are the physical mental
like what are the reasons behind that yeah there
are quite a few so a lot of the A lot of the
children that I work with that we would be talking
about this kind of total communication approach,
we also, as you mentioned, neuroaffirming, it's
because many of them have neurodevelopmental
conditions such as autism, ADHD, and generally
their social communication is an area of difficulty.
So for them, understanding how to make this work,
to do those things and those things come out,
what does that, how does that? work and it's
not because they're not intelligent it's not
because they they can't figure it out it's their
brain is wired differently so it's kind of like
we're speaking a different language to them not
a language as in spoken language but a completely
different dimension of language if that makes
sense it's like even bigger than that um so a
lot of children with autism will have difficulty
many of them process language in different ways
so such as gestalt language processors they might
process language in big chunks and not really
see how does it break down into these little
bits of little words and then the sounds. And
also as part of that, many of these children
will have real difficulty with processing the
auditory information that's coming in. So even
just processing the sound of someone's voice
and all the speech sounds involved in their spoken
language makes it almost impossible for them
to figure out how to break that down and respond.
And then there's also motor planning, like sensory
motor planning from the brain to tell the mouth
what to do. It makes that task so onerous for
them. They can't actually be able to do that.
So they have to use things like eye gaze. So
they have to use their eyes to point or they
might be able to still have more gross motor
movement so they can point with their finger,
even though that is a little bit fine motor,
but not quite as fine motor as speech. So all
of these things can kind of combine in an individual.
And there isn't just one like, oh, that's it.
we'll just put our finger on that button right
that that brain cell right there that's the one
it doesn't work like that so we we have to be
able to look at all of the different things that
are the barriers and total communication is about
removing those those barriers i mean I guess
another example would be some children with situational
mutism used to be called selective mutism, but
it is a phobia around speaking and using your
voice. And actually an AAC device, electronic
device can sometimes get around that issue for
that student because they can feel more comfortable
putting their ideas in and they're listening
to an electronic voice. They're not having to
share their own voice. And it's not to replace
their communication forever. Obviously, we'd
love and they would probably love to be able
to not have that intense psychological fear of
speaking in front of other people. And that's
why it's called situational mutism. I haven't
heard that term before. I way prefer it because
it's not selective almost feels like they're
choosing to. It does. It sounds like I'm choosing
not to talk to you, but I'm choosing to talk
to you. It's basically I can speak in front of
you, you know, mum, dad, whoever, but I can't.
speak in front of these other people or these
other situations in terms of environment, location,
people that are present. So it can be useful
for that, you know. So there's lots of those
kinds of reasons why people can't communicate.
And I mainly work with children. And most of
these things are sort of developmental conditions
and things like that. But there's also, we haven't
even talked about, you know, trauma. brain damage
and an actual an actual insult or injury stroke
etc etc that causes somebody to lose their ability
to communicate and obviously we want people to
be able to communicate their needs no matter
what their difficulties are because they still
have value even if they're not communicating
in spoken language which is it sounds like why
would a speech therapist because it's not it's
not the right exact it's more like a communication
therapist i like to think of it as it's all about
total communication which is why this is one
of my favorite topics and i'm so glad you decided
to be called communication therapist because
it's speech has is an iota of what you guys cover
you cover so much let's talk about that then
what does total communication cover people have
heard communication before they might have seen
symbols before they might have think okay well
you said something about eye contact you said
something about reaching what does what does
total communication cover yeah so we in terms
of being able to provide a total communication
environment we'd look at the whole environment
and say right we need to be able to offer all
these ways that somebody could access somebody
else's messages because that's basically what
it is it's accessing messages from my brain to
your brain and how could I communicate I could
do this and you know that I've just given you
a nod I'm agreeing with you whatever it is I
could do this I could send you an emoji all of
those things are ways for me to communicate a
message to you so you want to make sure that
classrooms therapy settings everywhere that this
child has access to especially in the home as
well They have access to all of these different
ways and means to communicate. So we offer them
by using our spoken language alongside things
like Makaton signing. Like you said, symbols.
It could just be like objects of reference. So
a lot of children will bring their cup or plate
when they're feeling hungry and realize that
they're really smart. They figured out that's
obviously going to make somebody know I want
something, some food or drink in that item. It's
really, you know, it's a no brainer, really.
And what we talk about when we put all those
things on offer is we. see what they're going
to resonate with because we can't really impose
just one we're not going to go okay we've decided
we're going to pick signing for you we're going
to pick this for you no we we can't do that because
we don't know I hear that in my messages a lot
a scary amount of saying actually one yesterday
said um I've learned all about Makaton I think
I'm going to change all of our communication
symbols to be Makaton symbols and because that's
the way we're gonna go and i was like whoa whoa
whoa like that's awesome that you've learned
makaton but like you need like other symbols
too or photos or objects like have it all but
it's just really fascinating to me of like okay
we've learned this new thing it feels and sounds
good like let's go with that one route it just
Yeah, it does sound interesting. Yeah, and I
think you're right about thinking about how important
it is to learn these different modes, but also
having them all on offer to see what somebody
will resonate with. And then you can lean in
to those specific things for that individual,
which may be slightly different from person to
person. Private to moment as well, right? Absolutely.
You could have a learner that is incredibly eloquent
on their AAC, but actually when they're dysregulated,
they... don't even want to look at it in fact
maybe they throw it because they just it's too
much it's the noise of it i don't know maybe
whatever triggering they can't access the visual
because when they're dysregulated that's right
so maybe they actually just need well i've had
students before that need just objects at that
moment or not even any choices at all actually
so often but they may just give you their choice
which could be hands in the face you know exactly
exactly or use their body to communicate exactly
yeah like turning away and that doesn't mean
they can't it just means they can't write now
so having the um having those available to you
in your environment in all those moments on those
bad days on those tired days on those poorly
days will really help as well so that they can
get their needs and wants understood in all those
moments and i think the key with that is to whatever
they come with that tells you a what they can
handle that in that moment and what resonates
with them the most and you need to honor that
by accepting it And supporting them, right, okay,
this is where you're at today. You can only just
about manage this. Fine. We're going to go with
that. I'm going to help you to make sure that
you get what you need. And then we'll worry about,
you know, encouraging that signing. A different
day. We're not going to be like, nope, that's
it. I'm not going to give it to you. Sign more,
sign more. You will, you will sign more. I've
seen it though. We laugh about it, but I see
it. I see it all the time. I see a dysregulated
child or a bubbly child. It's clearly wanting
something, actually making it really obvious
what they want, actually. That's right. Just
maybe not in a safe way or not in a, I don't
know, simple way. Yeah, I mean like this. And
then the adult is making them more dysregulated
by saying, give me this, or say this. Yeah, say
that. For goodness sake. They are communicating
so clearly. You clearly know what they understand
because you are literally like. mirroring what
they want and i think one of the one of the myths
that causes that issue is that if they use a
different means more often they will not use
spoken language it's fear of them yeah um but
the blip side of that is if you only allow spoken
you get this much compared to what their total
communication is that's why it's called total
communication because it's the full It's the
fullness of what they want to communicate and
they can communicate. And also it's the reasons
that we communicate. It's not just asking for
things. It could be commenting on things or sharing
a moment together. And those things are much,
much harder to get a symbol for. Yes. Or a sign.
Yeah, exactly. A bit of eye contact, a lovely
tone of voice that shows someone I'm enjoying
you being around or alerting an adult. that they're
not happy, they're dysregulated, something's
gone on, or they might be in pain and they can't
communicate that, but you can hear the change
in the tone of voice. That's really key. So it's
about, it all goes back to honoring what they
can bring, but providing all of those avenues
as well. And I think that's why it's so exciting
because I think I like to be able to go, okay,
well, that's not working for you. Fine, we'll
try something else. We'll try everything else.
We'll literally try anything because it has to
work for that individual. And when they choose
something that then they are able to be successful
with, they are not going to stop that. They're
not going to stop that and go, oh, actually,
I've decided I no longer want to speak because
although I can do it. So I've had parents say
to me, you know, oh, they're just lazy. And I'm
like, no, that doesn't exist. That does not exist
because how difficult is it to go and get your
object and your symbol and use your body language
and bounce up and down and point and gesture
when you could just say book, juice, whatever.
If they can get it out quicker, they will. And
I think that's where it comes in a little bit
of the kind of, well, spoken language is the
top. That's the gold standard of communication.
Yeah, there's like a hierarchy, isn't there?
Yeah, but it's all changing now with technology.
I mean, we do so much on technology. We are all
AAC users. We text, we voice note. Like I said,
we do emojis, all this kind of stuff. GIFs, what
is up with that? Like that's a whole little gestalt
right there. You know, if you think about it,
it's like a moment with a message, with a video,
something exciting. You know, if we're allowed
to do that, why are they not allowed to? And
I think they should be allowed to use any means,
any means that they can. And it will help them
to progress and to try different things. Yeah.
They won't know and you won't know unless it's
offered to give it a try. You really never know.
I've been so surprised so many times. What does
it look like to accept that they're... What does
it look like? What can it look like in the classroom?
What would they be doing? And what does your
accepting that communication attempt look like?
Yeah, so I think a lot of times it's about noticing
what they're doing before the words might come
or before the official mode of the sign or the
pointing to something. It's, okay, you can see
that they're body language and you want to support
that. So you want to make sure that... their
talkers nearby, not in a cupboard, you know,
somewhere else. Well, how are they going to use
that to communicate? So you want to have all
these things available. And there have been many
times when I can see that somebody's having trouble.
So this is a child who can't understand what's
going to happen and maybe why. We may not be
able to explain the why, but they're not even
understanding what's happening. So we're all
grabbing. We'll just reach for our symbol or
on your lanyard. We're like, right, this is what
we're talking about. I know you're upset. this
is what we're talking about and showing them
that. So we're responding to them from a, they're
showing that they're upset and we're responding
to them in a way that maybe they can't access
the spoken language. It's going over their head.
It's too much simulation. They're already crying.
They're already distressed. So it kind of goes
both ways, whether they want to say something
or whether you need to communicate something
to them. But a lot of times it's accepting as
in acknowledging, noticing. and letting them
know that you are there and you understand what
they're trying to say and then maybe going you
know modeling it back you're saying you need
this you know whatever it is whether it whether
they or you're you can sign it you could say
oh you want more of you know biscuit whatever
it is you you can model it without the expectation
that they imitate it straight away because I
think that's where the thing comes in that can
cause problems where The expectation is there
that they model it. Therefore, they wait for
that prompt in order to do that because they
think that's part of the routine. Not that they're
being lazy. They just think it's part of the
routine. They think that's what you're supposed
to do. It's not like they're like, I'm just going
to sit here and wait. Just be lazy. They're not.
They think it's part of the routine and that's
what's expected. So they wait for that bit and
then they do it in the right order. They're trying
to follow that rule desperately. So it's that
kind of modeling, little bit of pausing, little
bit of, you know. expectant waiting you know
using your visual body language as well because
they might actually be looking at you and going
why the heck is she not doing the thing I need
and you're like I know what you're trying to
say I know you want this let's give it a try
so it is very fine line and I always say to parents
like you can accept it model it and then give
it straight away so that they've been successful
with their small attempt, if they could say it
quicker, next time they might. They might say
it. Yeah, so it doesn't feel like a test. We're
not testing them. We're not. Absolutely not.
Yeah, we're not giving them an unreasonable expectation.
That's right. But maybe just giving them a chance
of processing time, a chance to try, a chance
to do it. And there's a fine balance there, isn't
there, of long enough. To give them a chance,
but not long enough they don't feel heard. That's
right. And maybe it's different for every child,
I assume. And also, you know, I've said to parents,
oh, does he know that word for that thing? And
they're like, oh, no, he's never said it. I'm
like, well, then why would you try and wait for
him to say it, to get it? If you know for sure
that child's never said that word, then why are
we holding out for that? Why don't we just go,
oh, yeah, dinosaur, whatever it is. And whatever
he's using, maybe it's teeth. you know showing
the teeth or rough yeah exactly so it has to
be something you know the child that can do in
order for you to pause that nanosecond longer
to allow them that time to give them that like
this is this is my cue I gotta do something I'll
try that thing that I tried that time and it
worked before and oh look it's worked again because
you're showing them by allowing them to be successful
you're not making them be successful you're allowing
them and it means you have to wait for them It
also means you have to use their language just
as much as you're expecting them to use ours,
right? So their gestalt phrases, their animal
sounds rather than the animal names maybe, their
flaps, their stims maybe, their reaching, their
jumping, that they're excited, you know, that
to them is speaking their language. So there's
far less pressure on them to fail because actually,
have you ever tried to mimic a vocal stim? It
is so difficult. Like what I've got, I'm thinking
of one particular pupil and he did this like
kind of thing, right, right at the back of his
throat. And me and my team, I was like, let's
try and speak his language. And I could not do
it. We could not physically do it. And God, this
is exactly what we are asking them to do when
we're asking them to sign, when we're asking
them to give eye contact, when we're asking them
to whatever it is. It just feels, I know what
I have to do. I know what I want it to sound
like. I can't make my mouth do it. And he is
an expert in that. He could do it. Yeah. And
it was just a really lovely reminder of actually
their language is hard to learn too. And if we
kind of try and meet in the middle, meet on that
bridge. Yeah. Then it feels more neuro affirming
to me because we're both feeling challenged.
We're both struggling and we're both really trying
to hear each other equally rather than pulling
them over to our side of the bridge fully. Yeah.
I really like that analogy. yeah are there any
communication attempts that you wouldn't accept
or that you would maybe react differently to
or how yeah that's an interesting question like
I think I would always accept and notice and
acknowledge whatever behavior is coming out um
because that behavior whether they intentionally
mean it to say something to you directly It's
giving me information about their mental state,
their emotional state, what's going on. And actually,
it may give me more information that I need to
ask more or find out more to explore with them
because they might not even know. So a lot of
the children who are non -speaking will have
so much trouble, even just... feeling the feelings
inside their own body from a sensory point of
view and then translating that into some kind
of language of like spoken language or signing
or anything just it's almost impossible and then
there's also that sometimes they get overwhelmed
by sensory things they can't tease it out or
they're actually seeking that that sensory sensation
because they're not they're not their body's
not giving them that feedback so they're trying
to get it so there may be like there's definitely
been times when children have done something
where it's you realize it it's because they they're
having that unmet need and they're doing something
that you would say that that's not safe and you
can tell them i mean obviously if a child's gonna
you know run into a road you absolutely can't
just go right i'll just you know wait and see
what they know like you just you have to grab
them and go you know this isn't safe but it's
things like it's things like you know biting
you're there or they go to pull your hair okay
that's Is that telling you I hate you or want
you to die? No, it's telling you I need something
and I really can't figure out how to tell you
what it is. Or I might not even know exactly
what it is myself. This is the quickest way I
know to get help or to get support or to get
you out of my space or whatever it is that you're
needing at that time. Exactly. And then sometimes
you've got to think about. combination of things
sort of making them safe using their language
of touch as well so obviously if they're touching
to show you know they're upset whether they're
doing something that could be injuring somebody
else you can use your touch in a gentle way but
also you can remove that touch so that it might
be that it's too much for them you have to know
your child and that just comes from spending
loads and loads of time with them yeah yeah i
think that's the point isn't it it's it has to
come relationship building has to come first
they have to trust you so If, you know, ignoring
any attempt of communication, however unsafe
it could be or ineffective or inappropriate,
it could be on a social level. More likely inappropriate.
Yeah, exactly. However it is, it's still an attempt
to meet their needs or be understood, isn't it?
That's ultimately what it is. And I've never,
ever seen malicious or calculated, ever. I've
worked for 16 years in autistic children. It
is always to do with... seeking a need trying
to get their needs met trying to be understood
trying to get the quickest way like you say they're
not lazy trying to get the most effective way
of creating the environment that they need right
there and sometimes that looks unsafe and inappropriate
doesn't it yeah yeah yeah like i suddenly need
to climb super high you know yeah yeah because
you actually i just need to get out of here and
sometimes up is the quickest way out Yeah. For
example, exactly that. Exactly that. And it's
not well thought out. Sometimes it's just in
the moment. I mean, these kids are very present.
It's second by second, isn't it? Especially in
my class, it's very second by second. But you
can acknowledge it without, with also offering
a safer alternative. That's right, yeah. Or you
can be there for them and show that you're here
and ready for them when they're ready. Without
any verbal, without any physical, without offering
anything, just by being there, just your body
language in the space and having had, like I
was just saying, having had that strong relationship
built before. So when they're not in that five
mode, you've played together, you've related
to each other, you've had those lovely cuddles,
tickles, eye contact. moments you've built those
up so that when these moments do happen where
it's maybe inappropriate maybe safe maybe hurting
behaviors then you've still built that trust
that you've got that strong foundation that you
know it's the tower's not going to come crashing
down it's okay we can manage this this is this
is tiny in comparison to all this wonderful stuff
that we've built up it's okay i'm here you remember
that time just before i was here for you i'm
here exactly so ignoring behaviors doesn't feel
right for me yeah no and also what you're saying
is about the memory like they're going to remember
the previous experiences and we do not we can
really underestimate how amazing how like rich
these children's memories are for things that
are almost something we wouldn't even be able
to articulate ourselves in words like the memories
of the feelings of experiences of moments when
something has like utterly calmed them and all
of those those those things because if you think
about it they're not spending all of their time
putting that into language all the time that
they're just remembering they're holding it as
that that like like a core memory this is all
i can think of is like these core memories and
they come they come back to that so if every
time they do something that could be something
you want you don't really want to happen or could
be unsafe or could be hurting if you respond
in a really negative way that could be for them
scary and actually causing them to be really
worried about that situation then they're only
going to ever associate those two things together
so you've got to figure out a way of being close
like you said with your body just proximity just
being close to them i'm not gonna leave you but
I'm going to keep myself safe from you, but I'm
going to be available for you. That really is
the thing. And I think it's so individual and,
like you say, moment to moment that there's no
quick, oh, yes, just follow steps one to six.
It's also so hard to not want to just fix it.
I know. Because sometimes it's really hard to
understand what they need and sometimes offering
all the choices makes it worse. And it's so hard
to see somebody you care so deeply about so stressed
and emotional. I mean, God, I'm just a teacher.
I don't know how parents manage it. God, that's
a whole other level, isn't it? Seeing your most
loved person in the world so stressed, so anxious
and not being able to know what to do to fix
it. And knowing that even if you attempt it,
it's going to make it worse is just the worst.
Yeah. It's the worst. Yeah. Yeah. And then, you
know, then you get all the guilt of like, you
know, you've got to get them out of the house
and you've got to get them to these things. And
it's like, actually, that's not a battle that
you want to have to worry about when you're just
trying to, both of you, keep yourself sane and
safe and happy and comfortable and, you know,
connected and not, you know, because that's really,
that's the security that. that is needed in that
moment and like you said it comes from that relationship
and it comes from experience um of being together
and relating in lots of different ways so you
know it's safe yeah an example of this i'm just
aware we're we're both aware of lots of in lots
of situations and i i know we can kind of get
ahead of ourselves a little bit so people are
listening kind of what i'm talking about and
i don't know if you'd agree actually marissa
it'd be interesting to see what you think about
this we had a pupil in my class who was headbanging
a lot And we weren't sure if it was pain or migraines
or seizures even, or we weren't sure if it was
communication. And after observing for a few
months of this, it was clear it was communication.
It was when there was an unmet need or when we
weren't going fast enough, when they needed to
wait or when it was a no or when there was a
barrier in place for whatever reason. So it was
communication. We ruled out pain. I think it's
always important to... to work out if there's
a medical need. So we rolled out pain. We had
the approval from GPs, pediatricians, that it
wasn't pain, it's communication. So we thought,
okay, right, great. And what they wanted was
to be swaddled and wrapped. That's what they
wanted. And the quickest way to get our attention
was to headbang, both fists in the temples, really
hard. And of course we came running. Of course
you do, because... You want to fix it. Like I
was just saying, you want to fix it. But all
this was doing was it was reinforcing. This is
the fastest way and the most effective way that
you can get us. So what we had to do as a team
was act really fast, like emergency. It is like,
let's go. When she first looked at the swaddle
blanket or when she started moving towards the
swaddle blanket before she'd done the hitting.
Or when she was just doing a slight little flicker
of the finger. I mean, this means you need to
know the children so well. Because there's tiny
little moments we were noticing just before.
And we would try and treat those as way more
emergent than the head banging. Because then
that told her. If you gesture or if you come
and get us or if you reach for your blanket,
that's an even faster and more effective way
of getting us to help you than headbanging. So
it's been 18 months now and now she will walk
over to her blanket. She will pick it up. She
will walk and find the nearest adult, sometimes
even the child in our class, and hold it up and
wait like this. And it's only because... We were
so consistent and tried to be so understanding,
so vigilant with her cues and tried not to fix.
We tried so hard. We believed ourselves. We trusted
ourselves. I trusted our gut. Actually, she didn't
want to be hurting herself either. We know she
didn't. It was just the most effective way. And
now looking at her, I just couldn't be prouder.
I really couldn't. Like on Friday. She got through
the whole day and there was no self -harm at
all. And she had the best day. And I could just
tell she feels so understood because her needs
are met. So I think when we're talking about
total communication, that has to come into it
too, that we acknowledged her communication attempt,
however unsafe it was. We saw it as communication.
We saw it as really important. And then we worked
as a team to help her find an even more effective
way. But it didn't feel nice at first, I have
to say. It really didn't. Because there were
moments where we had to, where she was hitting
herself and we were stood there with the blanket,
just waiting until she put her hands down and
then went, blanket. You know, you did it. You
did it. You know, blanket. Oh my gosh. You know,
and... and it was really hard we had to really
trust ourselves to know that like she's gonna
get this she's gonna get this and the team had
to trust each other too because if a few people
wavered it would only reinforce that you know
the best way you can do is self -harm which is
so hard and we're teachers as well like the parents
were incredible as well parents were doing it
everyone was doing it around her was trying to
acknowledge these tiny little things that she
was doing beforehand. And those little tiny things
were those little tiny bits of communication
that she was able to do prior to that. Because
for her, it was quite quick. For her, it was
like, I need it and I need it now. Or maybe for
her, it was really bubbling. But for us, it looked
like it went from zero to 60 in seconds. But
maybe for her, she could feel it. But it took
that long to... Yeah, for her to get to that
point. So you helped her kind of to the point
where she can even develop her awareness so that
she can plan so far ahead that she can go and
get it and go and bring it. It's incredible.
And not only that, so now that's the blanket,
but now she does it with the cup. Now she does
it with snack. Now she does it with object of
reference. Now she does it with her chair. She
does it, you know, and she will do it with, she's
using a GoTalk. So like AAC, digital AAC. She's
started to use it with that. And it's like, god
this you know just by acknowledging those attempts
it has shown her that you know she can communicate
and be understood because before that the only
way she could be understood was hurting herself
and she didn't want to hurt herself i mean think
how desperate a person has to be to be understood
and not lazy to be understood to hurt yourself
to the extent that Finally, people come and listen
to me. I mean, gosh. And this isn't an isolated
case. I mean, most of my messages are about very
similar situations. And the teachers are trying
to fix it quickly without actually thinking of
the why. Yeah, absolutely. And you've highlighted
one of the key things there. She's now got multiple
means of communicating. She'll bring the blanket.
she'll bring the cup she'll bring the objects
of reference but she's also starting to use a
talker that she can communicate with where she
can do that as well it may be that when she's
feeling that dysregulation she will literally
just grab the blanket and that's but that also
is that's fine because it's equal It's equal.
It's absolutely equal. It's not like, oh, but
now that you can press buttons on your talker,
now you have to go and get the talker and then
go to page with the blanket on it. No, you can
just bring the blanket. We do. So we wrap her
in the blanket and then we get her talker and
we sign blanket on her talker. But that's not
a barrier to her getting the blanket. She's already
wrapped in it. She's got it. Yeah, but you're
just modelling. Then we model, yeah. So it's
almost like accept the communication attempt,
meet the need, and then once they've got their
needs met. So if it's drink, okay, I'm reaching
for the cupboard, I'm reaching for orange juice,
or maybe I'm going to climb onto the worktop,
I get that a lot, to get the orange juice because
that's how I'm going to ask for it. That's the
most effective way of getting what I want. Okay,
do you... Do you go and get their iPad and sign
orange juice and then make it? Or do you make
it and then sign it? I mean, I would make the
orange juice and then I would show it. Also,
I would use what you have to hand. I'd be signing,
drinking at the same time and then get the talk
around. And so that is a way of you saying, I'm
allowing all of these forms of communication.
They're all equally accepted. And therefore,
I want to give you the opportunity to use what
you can. when you can and maybe put something
else in place like where they normally climb
onto the worktop maybe put a sound button on
there or maybe put a symbol or maybe put a voice
it's about being creative i mean you're looking
at so creative don't you yeah you're looking
at like that's where they climb okay well let's
look at the situation and and part of that is
that is part of total communication as well which
is you know it's all about it's all about tuning
in and if you pay attention you have to like
kind of chuck your own agenda out the window
and go right i'm gonna tune into you first and
then we're gonna work our way towards and that's
that's the best way that i've ever found so right
from right at the beginning you said it starts
with observation and you will, I hope that after
you've listened to this, so it's September, you've
listened to this, you've maybe got a new class,
maybe you've got a couple of new students in
your class. I really hope that next time you're
in your class or in your home, you sit back and
you observe what they are communicating or what
they're not able to communicate, like just climbing
on the worktop and getting their drink or then
they didn't attempt to communicate with you because,
but they're still trying to find their needs.
So you've observed that. And then the next question
is, What can I put in place in order to make
that easier for them to access that or communicate
that? Also, something that gives them the opportunity
to communicate. Because if they haven't got a
symbol and they're non -speaking, how are they
going to get you to get the drink? They're like,
well, I'm just going to get the quickest way
to do it. We should be honoring the very cleverness
of going, that's how to problem solve. I mean,
that is a solution, right? I think, you know,
I've seen a lot of times where it's like, oh,
no, no, we don't climb on cobblers. That's not
the aim. The aim was to, you know, get the drink.
It's to be at the top. Everybody knows that.
Also, sometimes that is the aim, but just in
this situation. Also, that can be the aim. And
then we go, and you need to climb. Let's do some
climbing. I suppose the only thing we need to
be careful about when we're saying, like, let's.
I can't remember what you just said. You didn't
say, let's not make it easy. You said, let's
create opportunities. The only thing that doesn't
mean, and I need to be really clear about this,
is purposefully putting barriers in place to
force communication. So I just need to be really
careful, really clear about that. I know that's
not what you meant at all. I know that. I just
don't want people to hear create opportunities
because... In my, not that long ago, 10 years
ago in my career, I was putting snack in lidded
clear boxes and getting children to give eye
contact to open it. Like there is no way I shudder
at the thought, but I did it. And lots of us
did it because that was what we were taught back
then. That is also putting in opportunities to
communicate. However, that is not total communication
because that child was already reaching for the
snack or that child was already. I don't know,
yeah, guiding me to the box. That was enough.
That should have been enough for me to open the
packet for them and give them one. And meet the
need and then model the, like you said. And then
model it. And that's how it's changed, I think,
over the last decade. I really think that it
has changed a lot from what is common practice.
Obviously, not everybody's doing the same things.
I think there are still a lot of more. traditional
old -fashioned kind of ways of doing things that
people are slowly like making changes but change
takes time I mean even your example of your student
who you're you the way that you described it
is like she really struggled with that and now
18 months later she we need to we need to think
about what that means right so what often people
will think is well you're gonna start to fix
something and tomorrow it's gonna be different
you know We're celebrating that it was 18 months
later and she's now doing what this is her pace
that she can handle and what was needed. So we
really need to stop imposing our timeline. Yeah,
our timelines, because we really don't know.
And it's one of the questions that as a speech
therapist, I get a lot from parents. When is
it going to happen? When are they going to talk?
When are they going to communicate more? When
are they going to start doing this? How do you
navigate that? Because I have questions like
that. And I want to have high expectations of
my students. But because I see communication
as equal, my aim is for them to be able to communicate
effectively. Whereas often the parents' aim is
to get them to speak. And I really struggle to
answer that question without just simply saying,
I just want them to communicate. you know however
that is but i know that's not what they want
to hear yeah i know and i think you're right
and i think i think there's two things that i
often say like first of all i will say i don't
know because i'm not gonna lie i have no idea
what's gonna happen um i'm actually it's so weird
that i'm genuinely almost surprised when it does
happen and you're like even i've been trying
at this for like you know as you say 18 months
and it's finally worked and we surprise ourselves
like they surprise us and we're like of course
it works because we did try all the things but
it's a wonderful moment but like I think also
that if we change if we change what the goal
is right if we if we go not just the spoken language
bit which is just here if we bring it out ripple
it out what do they really really want because
actually what they really want is to have a relationship
with their child that's what they really want
And you can get that whilst you're working on
all kinds of communication. And you can still
value that. And I think that's where the thing
is. And there is a sense of like, maybe they
might not use full, just spoken language and
get rid of all these other things. Maybe they'll
use this, you know, talker. They might use some
sign. They might. They might use some spoken
language, but it might not be massively clear.
But you might be able to then use it within your
family. Others might struggle, which is why they
still need these additional supports in place.
But it might be that they do all of those things
forever. And I do say that to parents. It may
be that they are a total communicator for life.
And there's not like they're going to pick one
and they're going to go, right, that's my favorite
mode. I'm going to only use that mode. We don't
do that either. It's just that we are in a predominantly
speaking. world us us speakers that is yeah I
think they want me to I think they want to hear
from me that it's at least possible yes and I
would say I would always say it's possible because
yeah honestly it's so hard though isn't it because
I don't want them no absolutely but I also don't
want that to be the sole aim because I think
then you're losing sight of what really matters
to the child like is the child's main aim to
be speaking i don't know not always actually
probably their main aim is to be understood more
often yeah i think it's better to like maybe
have goals aimed at what the child yeah and actually
if you talk to any adult who's looking after
a child in any capacity they're going to say
i want them to feel like they're understood and
valued as a human being yeah and actually you
can achieve that without getting to that so if
we can bring it back to those really fundamental
goals that are underneath Yeah. It just feels
quite ableist, doesn't it? For your absolute
hope, wants and wishes to be speaking. It's almost
like your hopes, wants and wishes to be walking,
you know, for a non -ambulant student. It feels
unfair, doesn't it? That should be the be all
and end all. That should be the ultimate hope
and dream. It just feels a bit ableist to me.
And actually, I'd love to be living in a world
where everyone sees it as literally equal. And
yeah, they come down to the fundamentals of,
yeah, I want a relationship. I want them to feel
understood. I want them to feel fulfilled in
life. I want them to be safe. And I'm not having
low expectation. No. Denuinely not. It really
isn't. It's just about, yeah, thinking about
person first and what they actually want. Yeah.
Yeah. It's hard. I mean, and I think that's one
of the things that that whole struggle. for parents
and people like yourselves educators speech therapists
who are working day in day out with children
and loved ones who they really want that connection
with they really want that communication um and
there is something out there that obviously we've
talked about already which is high -tech AAC
devices like and it's like that this is we're
in such an exciting time of life right now because
Technology has moved like so quickly. When I
was younger, nobody had cell phones. I know.
There you go. I'm American. I'm out of myself
now. Sorry. Nobody had the mobile phones, right?
Now we have mobile phones. We can connect to
anybody. We can use all these means to communicate,
right? And that hasn't quite caught up to mainstream
non -speaking children. But like you say. It
is moving in that direction. You've got children
who use objects and symbols and just all these
robust AACs. It's only going to get more affordable
as well, isn't it? More accessible, more affordable.
It's so different now, yeah. And I think this
will probably be a good time for me to talk about
the campaign. Yeah, I was going to say, you've
got an AAC campaign, right? Yeah. Can you tell
us a bit about that? Yeah, it's called Let Them
Have Their Voices. And we basically started it,
myself and Dan Harris, who is the founder of
Neurodiversity in Business. via social media
because he's got a son who is called the joshy
man and he's a non -speaking autistic boy he's
11 and he um he uses a talker to communicate
now he only got this a few years ago prior to
this he had situations where he was really frustrated
like your students like you've talked about and
like some of my students that i've worked with
and they obviously were trying all these total
communication things. And what they found was
that there are actually a lot of barriers around
access to these devices, which as you say, they
are more affordable now. So they should be something
that is readily available, but we still haven't
caught up from that kind of, from a infrastructure
from the government and the NHS and all of that.
So his parents purchased a device for him, got
him some software and they've worked with their
speech and language therapists and they've...
They've got him using it. It's brought on so
much communication, not just through the talker.
He's now spelling. He's now using his voice more,
saying a lot of words, approximating a lot of
words that may be hard to understand sometimes
by some people. But he's he's trying everything.
And I had an experience with a client of mine
who inspired me in that way. So that's how I
kind of met Dan. And we're like, I was talking
about this client I was working with. He was
talking about his son. I was just like, oh, my
gosh. And we were sitting there like, well, what
are we going to do about it? We can't just sit
here complaining about it. What are we going
to do about it? Okay, let's do something about
it. Okay. And then we did. So it was November
last year. We said, well, we'll just start this
campaign. Let's raise some money. Let's just
start with that. We'll raise some money. We'll
get people to, we'll get companies to donate
some iPads. funds in and we'll purchase software,
put it on them, get people to apply so that they
can work with their local team, whoever they've
got, teachers, speech therapists, parents, carers,
all of that to help them get this, to try it
out. Because what we found was, and we did some,
we did some research around, like we did some
surveys with parents and carers and it was heartbreaking.
And also with speech and language therapists
about these barriers. And, you know, on the one
hand you have the, we've managed to get it. It's
amazing. Our life has changed. absolutely change
things that doesn't mean the child is like reciting
sonnets on their AAC that's not what it means
it means they could be saying I like pink it's
healthy pizza please you know more tickles it
could be that that's the life -changing they're
talking about and on the other hand you have
the the current like the kind of the way that
the criteria is sometimes the process is that
you've got to sort of demonstrate that you can
do a lot more But these children haven't got
to that point of doing the whole sentence within.
But if you think about it, that's also imposing
our spoken language format. I'm seeing it in
my car. So one of the barriers to get AAC in
our county is they need to show distance and
persistence. So it means they need to travel
and transition across an area to a person. with
something to communicate. Now, with an iPad that
speaks for you, even with spoken, you wouldn't
have to do that. You could shout and be communicated
and heard. You wouldn't have to show distance
and persistence. And I'm blessed enough to have
everyone's got an iPad in my room because we've
fundraised for them. But it's proven to us that
those children that weren't showing distance
and persistence have shown great skills and progress
with the high -tech AAC. poppycock it's not it's
not a prerequisite from a clinical or evidence
-based practice it's just currently it's a prerequisite
for the funding aspect yeah but we want all that
to change so we are not hoping to raise all the
funds for all the people that will ever need
AIC because we that's not That's not the solution.
The solution is to change the system so that
it works better. From the foundation, yeah. That's
it. So we're just trying to help in the meantime
to show, oh my goodness, look at the difference.
Because a lot of people don't realize, like you
and I see these kinds of people all the time.
So what does the campaign look like? What are
you doing? How can people find out more about
it? How can people get involved? Okay, so excitingly,
we have literally today, Dan has delivered, Dan
Harris. Father of the Joshy Man. Joshy is amazing.
You can follow him on Instagram. I will put all
the details in the show notes for you or wherever
you put them. Definitely include this. But anyway,
Joshy Man. So Dan delivered a letter to 10 Downing
Street to push this issue. But also off the back
of this, he's actually just come back from...
earlier doing a giving giving evidence for the
at the house of lords for the 2009 autism act
committee so basically he talked about the non
-speaking autistic population and then we started
talking about the campaign and that that had
some really positive kind of impact so from that
side of things we're we're talking to the right
people we're raising little bits of money we
definitely need more but what we want to do is
make the most change that we can. And I think
what we'd love is for people to check out our
website, which is freetalker .org. There's a
lot of information about AAC, about the campaign,
about our socials and stuff like that. We're
a very small, teeny tiny team of very passionate
people, mostly teachers, speech therapists, parents,
all round passionate, crazy people that cannot
sit by and wait for somebody else to do it. So
we are doing our little bit in our little part
of the world. However, the campaign has actually
been able to donate devices in other countries
as well. So we've got USA, Dan's off to Brazil
soon. You know, we really want to make a big
change. We know it's going to happen. We know,
know, know, because obviously everybody's using
the telephone now, right? And we all have smartphones
and we all have Alexas in our house, you know,
that kind of thing. It's coming. So it is going
to happen. But we just want to keep pushing that
forward. And we don't want to stop. Because in
the meantime, we could be missing all these amazing
people and what they've got to say. Which isn't
good enough. Absolutely. No. So, yeah. And the
reason it's called Let Them Have Their Voices
is we're not giving them a voice. They've got
a voice. We just need to be able to listen to
it in a way that we can understand it. having
that AAC like you said these students weren't
able to go across the room but yet they can tap
it and go and because they've got that immediate
feedback because it's such a nice it's like cause
and effect feeling of tapping that thing hearing
that noise that gives them that patterned routine
that they need to feel confident with the kind
of process and that is the voice is the same
every time yeah exactly it's so autism friendly
isn't it it screens it's there's no eye contact
needed the voice is the same every time so it's
predictable it's all of that yeah yeah i can
totally see why um why it works and if in the
meantime obviously check them out and if in the
meantime you're interested to communicate with
your child, but you can't afford an iPad or an
app, don't let that be a barrier. There are one
loads of great organizations out there. You can
go to a speech and language therapist. You can
go to your GP. You can use low -tech AAC. Just
use something. Use objects around you. Use photos.
anything it's okay it's like we said before it's
all equal that's it's just about having everything
accessible as an even an option and that's what
this is about isn't it it's having it as an option
yeah um yeah thank you so much marissa this has
been so important i would love everybody to head
over to the all the stuff in the description
in the show notes to check you out the campaign
joshie all of it and thank you so much we haven't
spoken this deeply about total communication
before and it's really needed so thank you i'm
so glad yeah anytime it is literally my favorite
topic even though i'm definitely a speaker yes
i also use my face i'm using my face it's so
important um yeah thank you so much for the opportunity
it's been a great conversation and i really hope
that it's helpful for your listeners i really
do i know it will be yeah thank you so much marissa
take care thank you bye