My guest today is Samantha Fox. Sam is a speech
language pathologist with a master's from Kent
State University and the founder of Beyond Speech
Therapy Center, where they focus on personalized
therapy and building meaningful relationships
with clients. As a registered spelling to communicate
practitioner with deep expertise in early intervention,
Sam brings a unique perspective. to supporting
non -speaking and minimal speaking individuals
with autism, apraxia, and various speech sound
disorders. Today's episode is all about speech
language pathology and spelling to communicate
interventions. In addition, Sam will expand on
presuming competence and apraxia as an overlooked
medical condition. By the end of this episode,
we hope you learn more about speech language
pathology and spelling to communicate. I'll just
get right into it then. Cool. I'm good with that.
So when did speech language pathologists kind
of become more mainstream? In general. That's
a great question. Not one that I have a direct
answer for you. I mean, speech pathology has
been around for quite some time. I have been
practicing for about six years. And I got trained
in spelling to communicate about coming up on
four years ago. Okay. Yeah, I was just wondering
because Like the Kenner kids, Kenner had one
complete non -verbal and then there was two others.
Like I think one had like selective mutism. It
seemed like the other one was just like, would
only speak around peers. So I was just wondering
like what the history of, with these types of
interventions back then. Just curiosity. But
I would like to start with like. continuing on
your history and like how and when did you learn
about spelling to communicate? So I first learned
of spelling to communicate back in undergrad.
So this would have been around, let's say 2015
-ish. I volunteered even prior to that. with
a seven -year -old who is non -speaking, a practicing
autistic. He's 18 now, so that's been quite some
time, but I volunteered with him. At the time,
he was using more traditional alternative communication,
so a talker, and I volunteered with him. I fell
in love with working with non -speaking autistics.
He completely opened my world in that regard.
And then I went on to graduate school, had to
stop volunteering with him, just was pressed
for time. After I graduated, I started working
at a clinic and they knew to put the non -speaking
autistics on my caseload because I loved working
with them. And I was trained in Hanon at that
time, which is a social developmental model to
support autistics really based in connection
and following their lead, building communication
that way, and the social developmental model
is still, I absolutely subscribe to that. However,
I think now I have just found that there is more
to be addressed than just the connection piece.
I do recognize the importance of it, but I had
been using that for years. with my clients and
I was just seeing very minimal progress for most
of them as it related to robust communication
and so I stayed connected with this little boy.
His name is Kaden. He's not little anymore, like
I said, but I stayed connected with his mom.
And because I had so many that were similar to
him on my caseload, I kind of went to her and
I was like, hey, listen, I have a ton that are
really similar to Kaden. What? What's your suggestion?
You know, how do I how do I help support them?
And she was like, you know I really think you
need to look into spelling to communicate and
so they had gone to Virginia where the headquarters
is for spelling and because there was nob time
that could work with to Virginia. They did what
They came back, didn't go back for another year.
Mom just like really did the work at home with
him. And so they had been on this journey for
several years at this point. So I'm out of school,
haven't worked with Kayden for a few years, just
kind of like really getting into my groove as
a speech therapist. She tells me I should look
into spelling to communicate and... I went through
quite a process with that, to be honest with
you, because I Googled it, and if you Google
it, you will see tons. It doesn't end. And I
read through everything. I read through the things
that were very supportive of spelling to communicate,
and my god, I dissected all of the things that
were just saying. that it is not legitimate,
especially the ASHA statement from the National
Speech and Hearing Association. Like that statement,
I read many, many times and I thought, I don't
know. I've only been a speech therapist for a
little over two years. Who am I to go kind of
like? against essentially what the national organization
is stating. But at that point, Caden had spelled
to me a quote that I will never forget at this
point. And I watched him touch one letter at
a time to spell, use your awesome, powerful heart
to love the strange and fabulous people like
me. And at this time, Caden... Gosh, how old
was Kaden? He had to have been about 13, 14 years
old. Completely non -speaking. Spells this out.
And I said, okay, I'll take the training. And
at that point, I wasn't even convinced, to be
honest, for multiple fronts. Like, one, I kind
of had the mentality that... Kayden was an exception.
I knew he could do it. I watched him spell. I
was watching in front of my eyes. I knew it was
real. But I was thinking about all of my kids
on my caseload, and I just was not convinced
at the time that spelled communication was going
to be as widely applicable as what I found it
to be. But also, I just thought, let me at least
take the course and... learn, get the knowledge,
and then decide if I think that it's legitimate
versus just going off of what I'm reading on
the internet, which is really giving both sides,
like let me make the determination myself whether
I think it's something legitimate. So I, you
know, I took the course, I took the leap of faith
in that way, and everything that I learned in
the course made way more sense than a lot of
what I had learned in graduate school as it pertained
to autistic individuals who were non -speaking,
minimally speaking. And I ended up opening my
own practice shortly after because there was
nobody in the area that was doing this or very
supportive of it. And it's just flipped everything
on its head. And now we have about, last count
was probably right about 75 spellers that we're
working with currently in Northeast Ohio here,
ages four and a half to, I think our oldest is
around 35 right now. So it's a really broad range
of ages. Okay. Wow, that's fascinating. Can you
tell us a little bit about Beyond Speech Therapy
Center? Yeah, I've been in love, too. So I had
always thought that I wanted to open my own practice,
but it's just overwhelming when you start to
look at it. Honestly, I had a ton, a ton, a ton
of encouragement from my mom on that front. Like
I said, it was so niche because it didn't exist.
And so initially, I started reaching out to places
in Northeast Ohio that already existed that were
specialized in working with autistic individuals.
And I had said to them, like, hey, I'm getting
trained in this. Do you have any interest? And
everybody was like, no. And I was like, all right,
well, I guess then I have to create it, is really
what it came down to. It doesn't exist, so here
we go. So the practice opened. early 2022. And
very shortly after opening, it was just me by
myself. I was certified at that point as a spelling
to communicate practitioner, but I was doing
kind of a combination of tradition, quote unquote,
more traditional speech therapy, early intervention
and spelling to communicate. A few weeks into
opening the practice, I got a cold call from
my now partner in crime over here, who is the
occupational therapist, Emma Fiorita, she called
me and she said, hey, do you need an occupational
therapist? And I said, sure. And so she came
on and she had, she was... with a lot of my spellers
on occupational therapy goals. And so she had
got to see them be able to be more, more of an
active participant in therapy because when she's
working on sensory things, you know, getting
their feedback is so reliable. Hey, is this how
you're feeling about this? Or is this helping?
Is this hurting? Getting feedback made her sessions
just a lot smoother. And so initially I was,
you know, I was like, Hey, you should get trained
as a, as an STC practitioner. And she was a little
hesitant at first, but within a few months she
was like, all right, I want to do this. And now
she's a phenomenal practitioner. And since then
it's just. It's grown. Emma's been with me from
the beginning, but we have a few awesome speech
therapists. We have two more spelling to communicate
practitioners. We have a nice, nice little team
of eight here. So it's, it's growing at a nice
rate. And we do most, most of our caseload, I'd
say probably upwards of 85 % of our caseload
are minimally speaking, non -speaking autistics
here. So with that eight being certified in spelling
as for spellers, can you talk a little bit about
what it takes to get that qualification or that
training? Yeah. Yeah. So there, so we have four
right now that are specifically spelling to communicate
practitioners. And so it's, it's myself and Emma
has a background in occupational therapy. We
also have a recreation therapist who just got
trained as an STC practitioner. And then we are
fourth. Her background is actually in marketing,
but her brother is a speller. And so she had
interest and connection there. So she got trained
as well. So as far as, you know, her mom's a
saint. Oh, yes. Yes, of course. Yes, that's how
we got connected. Yes, you know this. Isn't she
the best? I love her. Side note, she is just
one of the best parents ever. She would always
come in with her pad of paper, diligently taking
notes, like always just like, I want to know
what I can do at home to support him. And it's
just like as on top of it as you could wish that
any of the parents could be in this process.
So she is. I agree. Um, so You know, as far as
like background, what's required. First of all,
the training is not through beyond speech therapy
center. I will say that for anyone listening
because you'd be surprised the number of calls
I get from out of state that are like, Hey, I'm
interested in taking, taking the training. And
I'm like, that's awesome. Let me refer you to
I ask it's I dash a S C. Don't forget the dash
is what they always say. It stands for international
association for spelling as communication. They
are headquartered in Virginia. They are the ones
who do the training for a spelling to communicate.
So these are not my guidelines or my training.
This is theirs. And you should check them out
anyways. They're incredible and they do awesome
work. But they do not, as of right now, to my
knowledge, there is not a... educational background
requirement to go ahead and take the spelling
to communicate training. Some have therapy backgrounds,
some have different special education backgrounds,
some are parents and siblings, and there's a
nice variety in that regard. The training itself
is about six months. Most of it is done virtually
through seminars and you have to submit yourself
work videos of working with spellers and they're
always like adding and tweaking things. So really,
if anybody is interested in that training, I
would have to say like refer them to the to the
website so that they can see. But it is about
a six month. It's definitely a graduate level
course. And it's it prepares you to work with
any. Motor profile so you know aka any student
that walks in you're going to feel equipped to
support their their motor which I'm sure we're
gonna Dive into more there, but that's what the
that's what the course will do so it's It's not
for like if you just want to work with one like
if you're if you're listening you're just like
hey I just want to work with my child spelling.
You don't have to go become a practitioner. Being
a practitioner, meaning going through that whole
training, really the people who are going to
do that are the people who want to have this
as like a career. You're going to work with multiple
spellers. They're going to come to you. You're
going to walk them through the process. If you
just want to be a communication partner is what
we would call that a CRP. Communication and regulation
partner is CRP. That is something that your practitioner
will help you to do. So it's not something you
have to pay for an additional training. Usually
like let's say you have a child and you're wanting
to get them started with it. You would call a
practitioner in your area. you would have your
child start seeing that practitioner and as part
of the sessions your practitioner should be training
you or coaching you how to work with your child
on the the letter boards. So you don't need to
go through like a six month training necessarily
for that. That's something that should be part
of those regular sessions and I know there's
like a there's sometimes a hurdle with there
is maybe a practitioner in my area or maybe cost
is a hurdle in that regard. I cannot recommend
enough getting with somebody who can provide
you resources. IASC is a great resource for that
to provide other resources in terms of how to
connect you, how to get that funding. They're
gonna be awesome for that. If you're in Northeast
Ohio, you know, Reach out. I will help you. I
help all of the families that that contact me
for that out of state. I'm definitely less helpful
to be honest. But working with a practitioner
regularly is I cannot recommend that enough because
there's so, so, so, so much to this process.
You watch a video spelled communication and you're
like, yep, I could just pop a letter board in
front of somebody and they can communicate. Anyone
who's been through it will tell you. I wish it
was that easy, that would be awesome, but it's
just not. And so that practitioner guidance keeps
you from trying it and then being like, oh, my
kid can't do it. They can. You just need the,
you just need the correct support and you need
somebody who's going to be able to guide you
through the inevitable tricky moments because
anybody who is non -speaking is going to have
a tricky body at times because they have something
called apraxia. So they don't have control over
their bodies a lot. Yeah. It's almost like the
people that, the autistic that don't have the
that they are nonverbal, that is, that they have
the apraxia problem. Yes, exactly. That's something
that's underlooked or overlooked, I think, is
apraxia. It is, yeah. It's really mistaken a
lot, to be honest, as an intellectual, a cognitive,
a behavioral difficulty where, you know, that's
where my background came from is like, okay,
well, I'm looking at it as they're not communicating.
My job is to figure out why, right? And so when
you start to dissect, why is somebody not communicating?
A lot of times what people fall to is they're
not communicating because they don't understand
anything that's going on around them. If you
really think about that, like to me, it just
seems insane. Like, it seems insane to just think
that somebody has been living in the world 5,
10, 15, 20, 50 years and just doesn't understand
anything going on around them. That's actually
more unbelievable to me than the opposite. But...
Unfortunately, because they don't have a way
to prove what they know or to reliably communicate,
that's often the default. It's okay, they're
not communicating because they just don't understand.
The other side of that is a lot of times people
assume they're not communicating because they
don't want to. And that's where you get into
the behavioral side of things. Like if, you know,
they're just basically refusing, like they have
it in them. Like I know they can do it, but they're
just not. And sometimes that can be really tricky
because like they will communicate some things,
but then in other instances it's inconsistent.
And so people try to make sense of that. I under,
I get that. But a lot of times it's, it's not
that they're just refusing to communicate. You
know, I mean, people have an innate want to connect
with others and communicate in most instances.
Sure. You have times of overwhelm. Like most
people are like, okay, I don't want to talk to
anybody. Like get out of my face. Sure. That
exists. I'm not saying that never does, but to
put, to place the assumption that somebody isn't
communicating because they just want to be disconnected
from everybody else in the world. is tough. So,
you know, when I'm looking at that, it's like
those are the two main beliefs though. It's that
they don't understand and that's why they're
not communicating or they just don't want to.
And so those never really made sense to me even
before I did the Spelling to Communicate training.
What I really fell on was this belief that they're
not communicating Not because they don't want
to or not because they don't understand but because
they're kind of quote -unquote in their own little
world and it's like I say it now and it feels
Silly coming out of my mouth, but there was no
other You know real explanation at that point
and I knew I didn't believe the other two and
so I was like, okay They're just in their own
little world Which is why I kind of subscribed
at that point to the belief like if I can just
get in there If I can enter their world and make
them feel comfortable, like they'll want to communicate.
They're going to come out of their shell. I can
kind of help them to connect in that way and
therefore help them to communicate. But that's
not accurate either. That's not the whole picture
because many spellers Actually, I'm going to
speak. I know this is broad, but I will say it.
I believe all spellers. I believe all non -speakers.
They do understand. They do want to communicate.
They're not in their own little worlds, but they
don't have the control over their body to be
able to show you any of that. And so they can
want all of those things. It doesn't matter.
They can be in our world, right in our face,
wanting to communicate, craving connection. But
if they don't have a way to tell us that, what
do we have to do? We have to assume. But unfortunately,
the assumption is almost always those things
that I'm telling you. So when we start to presume
competence, Meaning, you know, it's like a buzzword
right now. I presume confidence is great. But
like, what does that actually mean? I was gonna
ask you, so. Right? Okay. It's important, because
it is. It is like, like I said, I see it all
the play. I'm like, are people really like understanding
though what that means? It doesn't mean that
we believe all non -speaking individuals, minimally
speaking, I use that as an umbrella term, by
the way, that's how it non speaking. It doesn't
mean that there's absolutely no speech. A lot
of our spellers do have a decent amount of speech.
Some of like the blue whale is swimming in the
ocean, but then you ask them like, Hey, what
did you think about that movie? And they can't
answer that. Okay. That still falls under the
umbrella of non speaking. So I'll probably use
that for simplicity. But when you have somebody
who can't communicate with their speech fully.
We need to presume that they understand everything
that a peer that is speaking their age would
understand. So if I have a 13 year old non -speaking
individual, I assume that they understand every
single thing that a 13 year old would understand.
if they were speaking, a I believe that personally,
more than than their neuro just because I've
been bl thus far working with non a bare minimum,
we need to understand. Okay, but w in the corner
and jumping at the top of their lung They surely
don't understand what's going on in the room
and what's being said. Yes, they do. I do believe
that they do understand and that they are aware
of what's going on. So talking to them at the
same age, you would talk to a 13 year old. That's
important. Presuming that they understand everything
that said, even when it looks like they are in
their own little world, quote unquote. OK, that's
really important. providing them an education
that's in line with what you would provide to
a 13 year old. We're not working on colors. I'm
not working on letter recognition. They know,
and I can and will get into that. Why can't they
show it then? Well, if they know it, why can't
they prove it? That's a whole nother can of worms.
But presuming competence means you're gonna treat
somebody the exact same way you would treat somebody
else their age if they were speaking. That's
honestly, if you follow that base, that is presuming
competence. You don't have to believe that all
non -speaking individuals are locked in geniuses.
This is like a big thing in this world too. Listen,
do I think that they understand way, way, way,
way, way, way, way, way, way, way more than they
can express? Yes, I do. However, you don't even
have to believe that. All you have to believe
to presume competence is that they are capable
of learning. And anyone who will sit and say,
I don't believe so -and -so is capable of learning,
shouldn't be a teacher. shouldn't be somebody
sup have to believe that they of what their body
is show start to address things f perspective,
which is wha I'm throwing out social de I'm throwing
out the beha not getting our kids, our in their
20s and still can't express basic wants and needs,
let alone desires and opinions and preferences
for their own life. They don't have autonomy.
The models we've been using, I'm not saying they're
not appropriate for anyone, but there is more
to the picture. And so when we start approaching
from a motor deficit perspective, meaning I believe
you're in there. I believe your body just does,
it has a mind of its own. I believe your mind
and body are basically two different entities.
Like, you know, what's going on up here. You
know what you want to say, but when you try to
move your mouth, your mouth doesn't say what
you want it to say. And when you try to move
your body, your body doesn't do what you want
it to do. And so If I've been using a social
developmental model, which is what a lot of speech
therapists will, if your kids in speech therapy,
that's probably what they're using, is some sort
of social developmental model. That's the theory.
If they're not, then maybe they're an ABA. Okay,
they're targeting it from a behavioral approach.
Is that what I would do? No. Does it mean it's
wrong? No. My only challenge to that is If your
kid has been in quote unquote traditional speech
therapy their entire life and they've been in
ABA their entire life and they're still having
difficulty communicating, it might be worth looking
at. another perspective, like let's target the
difficulty, I shouldn't say problem, but the
difficulties from a different perspective. And
that's what I love about spelling to communicate
and why I always say it's not quote unquote just
communication. It's not just about the letter
board. It's a completely different shift in the
way that we're approaching the difficulties that
they're having with communication. And I have
found, that approach and targeting from that
perspective is so much more regulating for the
individuals. I have seen so much more growth
than I had with the traditional speech therapy.
And it's not, you know, I really wanna make it
clear that it's not me saying that. I believe
traditional speech therapy is bad. I don't, I'm
a speech therapist. I use those techniques too.
I just think there's so much more that the field
is missing here. And we have to, I do say it
with some sense of urgency, we have to start
looking at this. We have at this point thousands
of non -speakers who are telling us, my body
not doing what I want it to do. And still people
are like, Oh, no, that's not real. Like, yes,
it is. It is real. And they're telling us like
they're telling us their lived experience. And
just even if it's hard for us to wrap our brains
around, it doesn't mean that that's not their
lived experience, right? So I can't even remember.
I just keep going off on tangents on you, Ryan,
but humans hate humans hate when we can't make
sense of things. It's really provides us a lot
of conflict. We don't like that. So we'll just
push it into this box of our own understanding
and say, that must be it. Yes. Yes. Me too. Just
continuous, continuous learning is like, I just.
the backbone of what we should all be doing,
right? Like there's so much that we do not know.
And I'm the first to say that even though I'm
a huge S2C proponent, like they know, like the
people who do the training, like they will say
to you, like, yeah, we're still learning, we're
still researching, but we need to support at
the best level that we can. And that's by presuming
competence because otherwise, These guys are
stuck learning the same thing for 21 years. They're
in school till they're 21, a lot of them. And
they still have these goals to identify common
objects. It's like, what? I would also be going
crazy. I would be throwing stuff, right? There
comes a point where if you're a non -speaker,
unfortunately, you're you've experienced trauma
because you haven't been able to express yourself.
And then those guys can't get therapy because
a lot of therapy is based in talk, communication.
And so they're just like struggling with this
on their own for years and years and years and
years. And yes, there are sensory motor differences
that make regulation challenging, but there's
also all of this, you know, psychological side
of thing that can't be ignored. It's like you've
been essentially trapped in your body. So do
I think they hurt people with intent? No, I don't.
Broadly, I really don't. But do I think that
they just do not know how to Like their body
and their nervous system is so traumatized in
a lot of cases that I think they just don't even,
they don't know how to do that and they can't
ask for help with it. And so it just creates
this cycle of like, yeah, we have a lot of guys
that can be physical. Like I said, I never think
that it's intentional for them to be like what
people would describe as. aggressive, um, or
hurting people with intent. I never, ever, ever
think that's the case. Um, but it's just, there's
a lot to dissect. So, you know, me going into
that is just another way of saying there's so
much that we don't know. There's so, so much
under the surface here that we're just starting
to really understand these things at a deeper
level. And so I am, you know, I just choose to
be open -minded, like, hey, does it make sense
to me? Maybe. Even if it doesn't make sense to
me, do I accept it? Yeah, I do, because it's
coming from the people who are experiencing it.
So, yeah, so much we don't know. Yeah. I have
two comments based off of what we've talked about
so far, but I'm just sitting here imagining that
an ABA therapist almost needs training and spelling
that way they can convey. There's like a back
and forth convenience. Yes. But, you know, I
have a hard time saying that people need this
or, you know, we should require this. But it
seems like it's like so obvious, like they need
to be able to communicate back and forth because
ABA is very questionable. you know, and I've
talked or tux and you know, they' everything
is behavior. S with the science of A. B off,
but like where I hav statement. Okay, is that
t that all behavior is inten buzzword phrase
right now quote like shirts all behavior is communication
and people wear that like it's well -meaning
I get what you are saying all behavior is communication
but not all behavior not all actions are intentional
and if somebody doesn't have a way of communicating
they can't tell you whether something was intentional
or not and so like to give you a real -life example
the kid I was talking, he's an adult now, but
Kaden, who I was talking about earlier, his body,
so he calls his body Gus, because that's how
disconnected he feels, like Kaden is who he is,
Gus is what his body does. And so a lot of times,
Kaden's been swelling for like 10 years, okay,
so he's very, very practiced. A lot of times
when I put down the letter board, even to this
day I see him every week, I put down the letter
board and Gus, will hit the letter board out
of my hand so hard, like what people would look
at and say, that was aggressive, okay? And then
Kaden will spell a lot of times some rendition,
not verbatim, but. I'm sorry, I did not mean
to do that. I don't know why Gus is hitting.
It's an impulse for his body to do sometimes
because he's overstimulated or dysregulated,
right? But it's not coming from a place of, I'm
trying to smack that out of your hand and hurt
you. And he has just, every time he has the opportunity
to like clarify, he does. But let's say he didn't
have communication. then what happens? We assign
intentionality to that and we are like, whoa,
that behavior communicated to me that you don't
want that letter board there or that you don't
want to communicate or even worse, like you're
not being compliant with what I'm asking you
to do. Like you're just being difficult. Right?
Like those are some of the things that people
are going to say if they see that action in isolation.
It's, it's not as black and white as that sometimes
might things be intentional. Sure. But unless
they have a reliable way to communicate, how
can we, how can we do it? How can we say, we
just guess. It's such a conundrum, really, because
then you're like, oh, well, if you have a non
-speaking or minimally speaking individual, they
can't really use speech to communicate. So what
do we rely on? Body language. But guess what?
Body language isn't always reliable with individuals
with apraxia. So we can't just see what their
body's doing and be like, oh, yeah, that's definitely
what they did or didn't want. Sometimes it might
be. But sometimes it might not be and that's
where you get into this like really difficult
back and forth and why you need That why they
need the communication to tell you like hey,
yeah I hit that out of my god of your hand because
I'm mad right now I'm not telling you you can't
feel that way go ahead But but tell me that that's
what you intended then for the record. He's never
said that um, but He could He could say anything
he wanted. He has 26 letters. He could say whatever
he wanted The other comment or thought ahead
is, are there any data with self -injurious behaviors
before and after spelling? That's such a good
question. I think there are a couple of different
people. I've seen some threads of people talking
about this. I will tell you anecdotally, we have
had many families tell us that the dysregulation
slash physical behaviors that were going on with
their spellers significantly decreased once they
started spelling. I think in part that's because
of the presumption of competence. Like, oh my
gosh, you've lived 20 years with everybody thinking
that you didn't understand anything and then
you have somebody who says, hey, I know you're
in there. Whoa, okay, like think about the weight
that that just takes off by itself because some
of these people What's interesting about it is
that they'll say that the dysregulation decreased
even before the speller got to the point where
they could communicate their thoughts. Because
that's a long process. That sometimes is years
and years. just presuming competence, just telling
them like, hey, I know you're in there and starting
to work from a different route. Like I'm talking
about with that motor stuff that just on its
own, not even communication has a lot of times
decreased the dysregulation, which is really
interesting to me. That makes sense. That's incredible.
Because a lot of times the self -injurious behavior
is the head. So, you know, they just hitting
the head and Some people might have biting. Yes.
It's all so wild. So can we just start with or
transition into like going through the process
of how to even begin the spelling to communicate?
Yeah. For for beginners. I know I know you touched
a little bit about it earlier, but just walk
through like how Somebody might begin and then
just like the intervention the processes Yeah,
absolutely. So I do like before I get right into
that I do want to kind of Touch a little bit
on a praxia just because I think it's really
important for anybody who's listening I know
I'd like throwing the term around a few times
today. But I kind of want to give some reassurance
to people who might be listening because it's
so rare that I have somebody come in with an
actual apraxia diagnosis. Okay, so I don't want
people to listen to this be like, oh, well, that's
not going to be applicable to my child. 95 %
upwards of 95 % of the time somebody comes in
with their child is not able to Fully communicate
with speech. Okay, that could be that they have
no speech at all That could be that they have
some sounds that could be that they have 50 words
that they can use for items that they seem to
like or need That could be that they have full
sentences. Like I said, they can they can script
entire TV shows or sing songs but their Conversational
speech that's that's where we're really like
red flag for red flag for apraxia is if they
can maybe get some sounds out maybe some words
but if you ask them about something that is a
non -routine question you read them a story and
they're like what did you think of that you watch
a movie hey did you like that movie they might
be able to give you a yes or no but okay what
did you like about that can they answer that
Some of those things like I get the crossover
because some people would look at those and be
like, oh, well that if they can't answer that
maybe that is a cognitive a cognitive thing,
which yes, I am not saying that that doesn't
exist. But if they've been in traditional therapy
and it doesn't really seem to be connecting the
dots in the way that you had hoped over years,
that's when I would start to think like. Hmm,
I wonder if apraxia might be affecting them.
And apraxia, very simplified, is a disconnect
between the brain and the body. So what all spellers
have in common, most of them are autistic, not
all of them. There are individuals with Down
syndrome, unidentified intellectual disability
is one that I've seen, a lot of syndromes. These
individuals, at their core, what they all have
in common is that they have global Their brain
is not communicating well with their body, including
their mouth. So all of that to say, I just want
to make sure that people aren't, you know, thrown
off by the term apraxia. Most of my families
have never even heard it, who come to me. So
like that's not bizarre if you're sitting and
listening to that. And if you're wondering like,
well, how do I know? If you go see a practitioner,
if you go see somebody who is trained in spelling
to communicate, they should be able to, during
that first visit, they're gonna look at the markers
of apraxia. And there are going to be certain
things that are going to show those apraxic tendencies,
and they're going to be able to show you that.
So that's my little, I guess, disclaimer before
I get into the actual process. So Sorry, that
was necessary. Oh good. Okay. I'm glad I didn't
you know, it's like it's it's one of those things
like it's just teasing out because I know so
many parents just feel Lost. I mean, and this
is what they've described to me, right? They're
like we've tried everything like that is something
I hear I can't tell you how many families have
told you we've tried everything It's it's nothing.
Nothing is really working. Okay, we've tried
all that those other things like let's try, give
it another chance. You got to stay consistent,
but I'm not here to tell you what to do or what
to try. Really, I just want to make sure people
know that this exists and that people are seeing
real... Differences not only in communication,
but their regulation their day -to -day activities
like this is really that it is changing people's
lives and I and I want people to know about it,
so um if you Connect with a practitioner there.
It's growing. There are a decent amount of practice
I don't know how many there are right now in
the United States, but there's a decent amount
um You can go on that that I ask so I dash ASC
org they have a map that will show you where
practitioners are, so you can easily look and
see where one is near you. From there, I'll speak
from my experience. People might do things a
little bit differently, but I think for most
practitioners, they see their spellers once a
week for about 60 minutes seems to be pretty
standard. People always ask when they call, well,
how long? How long is my child going to need
to be in this therapy? Difficult to say, just
like if you asked about speech, how long are
they going to need speech therapy? That's also
going to be a challenging question to ask, right?
But what I can tell you is starting from the
beginning to getting some open -ended communication.
So a lot of people will just say it's open. Getting
to open is what you'll hear. What that means
is that the individual is able to openly express
their thoughts, their feelings, their opinions,
their preferences, okay? We don't start by asking.
We can't just put a letter, again, I wish it
was this easy. We can't just put a letter board
down in front of them and start going into, well,
what did you think about the movie? That would
be awesome, but they haven't yet developed the
motor skills to be able to get their eye on the
target and their hand to follow through and hit
the target that they want. We have to explicitly
teach them. Like, what does that sound like?
Move your eyes to the left, reach your arm forward,
bend your elbow. Like we're really coaching their
motor system to be able to accurately choose
letters. We work under the assumption that they
know all of their letters and they know how to
spell the moment they walk in the door. We're
not teaching them how to spell. We already know
that they've been exposed, in most cases, they've
been exposed to literacy since they were two
years old and watching Sesame Street and listening
to songs on the radio and looking at books and
signs and they pick this up. Is it a little bit
of a mystery to me? Sure in some cases it is
but when you really think about what master observers
most people will say this about their non -speaking
Child they'll say oh, yeah, they don't miss a
thing like that. They're looking right like they
they are observing the environment around them
and A lot of times they don't have the motor
skills to play with toys in the way that their
same -aged peers are playing with toys So what's
always around if I can't play with toys? I can
look around right now and see 15 things with
text on it around me. Text is always around,
and these guys are taking it in. So you start
to pair that with, like, yeah, I've listened
to the Phonics Cocoa Melon song four bazillion
times, and I have text around me. They start
putting this stuff together. They're taking in
their environment. So. Anyways, another tangent
there for you. But they come in and we presume
that they already know how to spell. So if they
already know how to spell, why can't I just put
this in front of them and then they can spell
their thoughts? Because of apraxia. So they cannot,
like apraxia also affects the eyes. We call it
ocular motor apraxia. You and I, probably take
this for granted. I can read. I can scan things
very easily. They can also read. A lot of times
that's misjudged because they can't use their
speech to read aloud, but we can read in our
heads, right? So they can also read in their
mind, but we're looking at scanning all of these
letters, not only scanning them, but then being
able to jump your eyes between letters, because
if I want to spell flamingo, my eyes need to
jump from the F to the L to the A to the M, okay?
So I need a lot of intentional motor control
of my eyes to be able to do that. But also, I
need to sustain my visual gaze, lock in on the
letter that I want, and then I have to move my
arm to select. the letter that my eyes are fixated
on. Hand -eye coordination. So if you've ever
noticed that it looks like an individual who's
non -speaking can't quote unquote pay attention,
their eyes are just like their heads moving,
their eyes are everywhere. I see this all the
time. A lot of times that's just because they
do not have the eye control, the motor of the
eyes to get their eyes to stop and sustain the
gaze. And then that hand -eye coordination is
another level to it. So they come in and we actually
start with what we call the three letter boards.
So the alphabet is split into threes. Why do
we do this? Because of what we just said. This
now is not 26 letters to scan. This is eight
to nine letters to scan, which is going to be
easier on the eyes. Also larger targets. So when
I'm working on hand -eye coordination, a larger
target is going to be easier. So we start with
this, and I think it's important too to tell
people, you do not start with open -ended questions.
I think that's a really big misconception where
it's like, well, you're showing them like, where
to go, you know, it's not real. And it's like,
okay, well, if I review a lesson about flamingos,
and then I say, what are we talking about today?
And I hold this in front of you, and then my
hand goes like this, and I show you right to
the F. People are like, oh my gosh, you're showing
them where to go. Yes, I have to teach them what
they need to do with their eyes. so that they
can lock in on that target and then I have to
teach them what they need to do with their arm
to make it work in conjunction with their eyes.
That's why I'm not asking them what's your favorite
animal and then leading them to spell flamingo.
I don't know what their favorite animal is. I
can't. prompt them to an answer that I don't
know. And so we use lessons in that way. We're
like, we'll read to them a very age appropriate
lesson about why are flamingos pink. It has to
do with their diet. We use bigger words. We spell
them out for them. And then we ask them questions
based on what we read. Not because we're testing
their comprehension, because we assume that they
understood everything that we just read to them,
even when They're pacing around the room, jumping
up and down, screaming, all of that. And that
looks bizarre to families. They're like, wait
a second, what do you mean? How are they listening?
You will be shocked what they are picking up
when they look like they are not paying attention
at all. My favorite is when families spell things
to me. They're trying to be discreet, so they're
spelling things to me. And I'm like, you know
that they're listening to that and get it right
now. We start with this, and sometimes we do
start with a really strong prompt. Sometimes
I literally am pointing right to the letter,
but it's because it's a known answer. It's something
that I just read. There's only one answer that
they could possibly be going to, and I need to
be able to show their body how to accurately
hit those letters so that eventually, when we
fade our prompting, just like any other therapy,
There's never hand over hand in spelling to communicate
for the record. Our hands are not on the speller,
but sometimes we do provide us a strong visual
prompt, because once we've moved to this and
we fade back our visual, meaning I'm no longer
going like this across the board, because now
we're starting to spell like, hey, if you had
a pet flamingo, what would you name it? You can
start with any letter on that board. I don't
know where you're going for that, okay? And so,
We get to the first time we get to open communication
or open questions is on this 26 stencil. There
are adapted boards. There are different versions
that you'll see the practitioner that you work
with will guide you. Once for these stencils,
we use a pencil. The speller uses a pencil to
poke through. It provides a good amount of input
because the whole arm is moving in spelling to
communicate. So The way we describe this is it's
taking the fine motor out of communication. Everything
we use to communicate with our mouth is fine
motor speech, very, very fine motor and intricate
movements of the articulators. But then also
thinking about sign language. This is a ton of
fine motor to be able to sign. We're writing
a ton of fine motor. And so a lot of times people
will Say like oh, well, what about these other
avenues? It's like Those are good avenues, but
they still require a lot of fine motor control
and they don't involve explicitly teaching the
motor because like so many families have tried
sign language I mean, I think that's something
just or Even like a regular talker, you know
where it's like hit the picture and like communicate
Those are great. The issue isn't with those methods
themselves. The problem is that we're not teaching
the motor of what you need to move your eyes
down. You need to reach your arm forward because
we're just assuming when they hit the wrong letter
or the wrong icon that they didn't understand.
So then we just keep teaching them the same thing
over and over. We're like, no, more means that
you're gonna get more. You hit go, you know,
or whatever that is. It's like, that's not gonna
get us anywhere, because we're not teaching their
body what their body needs to do. Here are the
physical movements that your body needs to do
to be able to accurately poke a letter. And so
with time, they get even more accurate on this.
And then we move. to a laminate board. This is
in like most of the YouTube videos if you watch.
This is what a lot of people will see. This,
no pencil anymore. We're starting to use the
finger. We don't need that input. The arm movement
is solid by that point. We're moving the whole
arm in a gross motor way, which is helpful for
most. And from here, a lot of, at this point,
they're gonna be able to tell you, If they're
open on this laminate board, you can ask them,
hey, what are your goals? For most, most individuals,
they want to be as independent as possible. So
a lot of them, they choose at that point that
they want to move to the keyboard. Does everybody
make it to the keyboard? No, but a lot of people
like, listen, if they can openly express themselves
on a laminate board or even a stencil, you know?
If you can say everything that you want to say
with these, a lot of people are happy with that.
And it's motor -wise much easier for a lot of
individuals to use those boards. So it's not
like a standard that you move up to the keyboard.
But I will say, especially in my own experience,
a lot of the spellers do want to move to the
keyboard. And then subsequently, they want to
move to a keyboard propped up on a stand. So
somebody no longer holding the keyboard or the
letter board for them is often a goal, too. That
makes sense, because it's just like any other
goal. We set goals and we... We have these like
little benchmarks and it's so different for them
because they see that as like a a bit, a greater
accomplishment, I'm assuming. Yeah, it's huge.
I mean, it's so challenging, especially the keyboard
up on a stand. It is a ton of regulation control
for the speller, but I have several that are
doing it right now, and they're very successful.
When you're able to create your own goals, that's
another level of... autonomy. Um, you know, that's,
that's motivated. That's intrinsic motivation.
Um, and so, uh, they, they, they really never
cease to amaze me in terms of like what they,
um, what, what their goals are and what they,
they envision, um, for themselves and, uh, having,
having control of their life at that point is,
is really what it's, what it's about a lot is
like, I don't, you know, is it, is it bad to
have to rely on somebody? No, we all rely on
other people. We all rely on other people. But
I get it. You know, I get wanting to be as independent
as possible with it with it as well. And it is
with practice, anything, any motor plan, anything
we practice over and over and over and over and
over and over again, what happens? It gets easier.
It even gets automatic for us. Driving a car
is a really good example of something like you
have to think a ton about when you first start.
But once you do it, now you can multitask and
drive the car, you know? And so that's what happens
with that motor movement. I practice this, I
practice my intentionality with my eye movements,
and I practice intentionality with my arm working
with my eyes. And what happens over time? It
becomes automatic. And when it becomes automatic,
Whoa, now I'm free. I don't have to think so
hard about every little thing that I'm doing.
I don't have to think about turning on the blinker
and the steering wheel and pushing the gas. It's
automatic for me now. So when that becomes automatic,
now I can start to really access my thoughts
and get my thoughts out, just like talking to
somebody in a car. If you are trying to have
a conversation with them, the first time you
tried to drive a car, you would have crashed
the car. Or you wouldn't have been able to hold
a conversation with the person in the passenger
seat, right? Not because you didn't understand
anything that they were saying to you. You're
so focused on your motor. It's a new motor plan,
right? And so that's what happens with our spellers.
And that's why if you plop down a letter board
in front of them, whoa, I haven't practiced driving
the car and having a conversation at the same
time yet. It doesn't work like that. So you have
to build up that motor plan. You got to practice
driving the car or poking the letters before
you're really like your mind is free enough and
not focused so much on the motor that you can
do that. Yeah, as you explained that I was that's
exactly what I was thinking about is like an
athlete practicing exactly constantly practicing.
Yep. And it's the motor control. And I was also
thinking like even Lower level or more so -called
high functioning autistic have Problems with
speech and language. So those fine motor skills.
Yes So if we just even thinking about this more
severe profound, so it's going to be much worse
Yes, and even the hand -eye coordination. Yes.
All autistic have pretty bad hand -eye coordination.
Yeah, so if you just think about The severe to
profound it's just going to be just so much worse
And then you just have to practice that in. Yep.
You just have to practice it. That's it. That's
what I say. As long as you think they're capable
of learning, right? That's really the foundation.
And I think one thing that I had somehow skipped
over, because I probably was talking about something
else knowing me earlier, is I was starting to
say... that for somebody to get to open, I wanted
to give that timeline for somebody because it's
not immediate and I don't think I got to it.
So I wanted to say for most spellers, it takes
about a year to 18 months of consistent practice
to consistent meaning one time a week with a
practitioner and multiple times a week at home.
Doesn't have to be long at home, I always say
like, but you know, If you can get in four to
five times a week, 10 to 15 minutes, that's awesome.
But that consistency, like you're talking about
sports and that practice, it's so, so important.
And that's about how long it takes for most.
Now I will tell you, I've had spellers that it's
taken less than 12 months, and I've had spellers
that have taken... three years of consistent
practice. It depends on the level of apraxia
that we're dealing with there. And I'm sorry,
I'm going to move rooms, because I know the therapist
needs this room next. So I'm just going to take
you on a little tour of my office, I guess, here,
Ryan. Her propeller that's coming in really likes
this room specifically. So I want to get out
of her way. The way you described the different
outcomes is not to be expected because we all
have different levels of inabilities. So it makes
sense that getting to those points will be different
as well. And a lot more people need more practice.
Practice, the intensity and frequency varies
for anything we do. Yes. Um, what, what do you
find? I have some questions about what are the
barriers for, for spellers. I guess maybe less
specific or more specific question is what's
the insurance coverage like for this? Uh, zero
is what it is. Um, Yeah, so Spelling to Communicate
is not an insurance covered service. There are
some fantastic resources out there. IASC provides
a speller startup fund to cover some initial
sessions, get people the letter boards. which
is an initial invest We have like I, you kno
nonprofit sector of my b we could fundraise and
pr to um spellers who need on your, depending
on yo my background in speech and then Emma's
background in occupational therapy gives us a
little bit more flexibility because we can bill
our services as speech and occupational therapy.
But we're very creative and we try to be comprehensive
in ways that we can get this covered for people.
It's very important to me that it's accessible.
but I know that it just kind of depends on like
where you are in the country, who the practitioner
is, and there's like a lot of variables, a lot
of variables there. So certainly the financial
aspect can be a barrier, but a lot, I think a
lot of practitioners do have sliding scales as
well, or they're going to be able to point you
in the direction of getting some financial coverage.
I know there's a lot of people working on getting
it covered through insurance. So it's just a
battle right now. So I think financially definitely
a barrier. The other main, the main thing that
comes to mind is just dysregulation to the point
where the individual is unable to initially tolerate
like a car drive, like a long car drive to get
to the practitioner or they can't tolerate even
like initially being in the session with the
demand, the voter demands that are placed. Like
sometimes it does take a decent amount of co
-regulation and just kind of like getting used
to it and them trusting, you know, trust is Trust
is so, so, so important and trust isn't built
in a day. Um, so that's, you know, that's the
other main thing that comes to mind. You know,
I've had parents call like, well, my, my, uh,
child is going to hit, like they're going to
throw things, they're going to hit, they're going
to smash their head. Like, you know, just like
a lot of difficult, um, physical behaviors that,
that come alongside things. I always tell them,
you know, there's nothing that, tru nothing that
could be said go, whoa, we can't help t I think
that it's just, t plan and it needs to be i hate
to see people say, going to work because my or
my child is going to because maybe, and I know
that sounds silly, but maybe just really hearing
from a professional, like, hey, I get it, you're
in there. Like, I'm not gonna talk to you like
you don't understand, because I know that you
do. Sometimes that's regulated enough that they
want to work for you then. Like, they're like,
okay, let's try this. And even sometimes they
want to work because they want to communicate,
but their body still doesn't cooperate. That
also could happen. But if you have a practitioner,
they should be able to really walk you through
what we can do to support their regulation so
that they can get to spelling. on the boards
because we can't always just dive right in. I've
had spellers sometimes their motor is so tricky
that like I go months where we're just really
working on hitting one letter. Or I have spellers
who have significant dysregulation challenges
that we have to spend some time just like building
trust and co -regulation strategies together.
So that's what I'd say the other big barrier
probably is. There are two things on your website
that really stood out to me, and that's the individualized
intervention and the meaningful relationships
aspects. And I think maybe that's why, maybe
you just described the sources of those. It's
probably more, this represents who you are anyways,
but it seems like those are. Required or I think
so. I think so. I'm just gonna put my computer
in here and give you the full the full tour of
the office today, but Yeah, I mean I think that
You can't do anything without relationships and
without connection. I mean certainly so that's
why I say like that is my background And that's
what I come from but I just I could recognize
that it wasn't the whole it just wasn't the whole
picture. And, you know, individualization, that
I'm very, very thankful for my therapy background.
I think there's a lot that even though I had
an excellent graduate program, I think it's just
like a... more of a worldwide misunderstanding
of a lot of things in which, you know, I'm thankful
to the course, the Spelling to Communicate course,
for teaching me those things. But my therapy
background and Emma's therapy background definitely,
I think, help with the individualization because
we're just very used to that sort of therapy,
um, therapy environment, kind of the hierarchies
of support and the way that we interact with
families. Like those are things that are very
guided by our, our background with those. So,
yeah. Yeah. Is there anything else that we haven't
talked about or covered that you seem, uh, you
find necessary? We've done. We've done a lot.
It's so much, you know, when I like every time
I sit down, this is like I think my fourth podcast
that I've done about this. And every time I sit
down, I'm like, gosh, it's so much information,
like, you know, and they teach you in the course,
give you like little five minute like spiels
about about the different things. But even that
it's like I give a five minute spiel and then
it opens up 10 more cans of worms. So I think
Yeah, it is. It is. There's just so much, you
know, I'm basically trying to fit four, six months
of a course and four years of experience into
an hour. Um, and so I, you know, the, the biggest
thing, um, that I try to tell families is that
there is a leap of faith. Um, and it's the hardest
part about spelling to communicate. Almost every
single person who calls me says I Believe that
it's real, but I don't know if it's gonna be
my kid I don't know if my kid is going to be
able to do this and that is I get it But I tell
you almost everybody says that for a reason It
you don't get immediate proof proof validation
that they understand everything. You don't walk
in on the first session in most cases. And, um,
you know, they can just spell unassisted and
you're like, Whoa, my gosh, they did understand
everything the whole time. That that's not realistic,
but, uh, because the prompting has to be faded.
Um, and so initially, like I said, with full
mingo, we're like, maybe we're pointing right
to the letter and you're thinking, Oh my gosh,
I don't know. Like, I don't know if this is really
going to go anywhere. They're showing them right
where to go. My best advice in that moment is
kind of trust the process. Take the leap of faith
because you won't get immediate validation. However,
it will come. There will. Everybody has a different
threshold for like what what it takes for them
to be like, Whoa, OK, it seems like it seems
like they really knew that answer. But. it will
come if you stay consistent enough with it. Even
though it takes that year to year and a half
to two to three years, whatever, to get to open
-ended communication, that doesn't mean that
you're not gonna see the progress along the way.
You are going to see the progress from session
to session to session. Doesn't mean you won't
have bad days. Everybody does. But the leap of
faith is the hardest pill to swallow. And I think,
you know, really, if we want to talk about a
barrier, that is a hard and it's an understandable
barrier because you have to. You know that for
the parent has to. Not be afraid to hope, and
that is really, really, really hard for most
parents that and this is just from speaking to
them that I know this. You have to you have to
be. open in that way. And even if you don't believe
it at first or you're a little skeptical, the
leap of faith unfortunately is necessary. And
I can tell you every single parent who's here
doing it with their child would tell you that
it was absolutely worth it, but not that it was
easy. So if it's something people are open to
learning about, learn about it. If you can go
see a session in person, Go see a session in
person, because you can watch 1 ,000 videos.
There is nothing like going to watch a speller
who is open -endedly communicating in a session.
It is awesome, and it probably will change your
perspective. And you might still have that bit
of like, oh, but is my kid gonna be able to do
it? But then when the parent who's sitting there
with that speller who's typing says, yeah, I
thought that too. You're gonna feel a lot better.
So, underestimated, the book, underestimated
by J .B. Handley is how most of my family's got
to me. It's written by a dad and his fellow son
and it's... Think it just resonates on a different
level with family. So if you can get underestimated
I know they have it on Amazon and read it. That's
a great That's a great way to learn more from
like a parent perspective, but nobody gets it
like like another parent and so I think really
though that's I think that's everything kind
of in a nutshell. I mean, I probably could spend
hours and hours and hours and hours talking about
it, but that gives you a good snapshot, I think.
Really good. I'm anxious to see what Spellers
is like in one or three years from now, five
years from now. Yeah. you can come back and give
us some updates, I hope. Ah, I hope so. I think
it's, I think it is going, I think it's just
a matter of time, to be honest, that the things
are really gonna shift and the research, they
are working on the research, you know, everybody's.
But what about the double -blind studies? And
it's like, they're working on it. They're working
on it. And there are a couple of research studies
that do support spelled communication. And I
encourage everybody to learn more and read both
sides and make the determination for yourself.
But it's changed. my life. I've learned so much
from spellers. Um, and I, yeah, I'm just, I'm
very thankful that, I'm very thankful that my
buddy Kaden, uh, guided me here. Cause that's,
that's really, he is, he knows it too. He's,
he's, uh, he's very humble though, I will say,
but he knows he's the, he's the reason we're,
uh, we're, we're all here at this office right
now. So I appreciate you wanting to. wanting
to learn more about it, Ryan. And, um, yeah,
I mean, even like anything that I can do, you
know, my website does have a ton of information
beyond speech therapy center .com. There's a
tab for spelling to communicate. I ask has a
ton of information. Um, so people who are wanting
to learn more, that's where I'd say Facebook
is great too. We post a lot of stuff, a lot of
speller content on there. Um, but it's, uh, It's,
it is kind of people refer to it as a revolution.
I don't, um, I don't disagree with that. I think
it really like the spellers are getting kind
of fired up over here. Um, I think about it because
they just, they want, they're like, listen, I
don't want somebody to go through what, what
I just went through 20 years of, you know, um,
schooling that was way below where, where I was
intellectually. So, um, yeah, I'm, I'm very thankful
to be a part of it. It doesn't, it feels very
surreal sometimes. Yeah, it's amazing work. Thank
you so much. Well, Samantha, I hope you have
a great day and keep doing this great stuff.
Thank you, Ryan. I appreciate you. We'll talk
soon. All right.