S1 Ep005 Communication Access for All in Public Spaces: Complex Communication Needs with Janae Romano, Pt1

Apr 3

This is part 1 of our 2 part conversation with Janae Romano, a disability inclusion proponent, nurse with 20+ years of experience working with individuals with neurological conditions impacting speech-typical communication, and advocate for individuals with complex communication needs. We discuss:

The surprising reason most people haven’t heard of complex communication needs.
The range of medical conditions that can impact speech-typical communication.
The neurological reasons our communication abilities can change from moment to moment.
Why some fields urgently need to normalize multi-modal communication.

Bio:

Janae Romano is an advocate for individuals with Complex Communication needs. She has been a nurse for over 23 years and spent the majority of her career (13 years) as a 1:1 nurse for a young woman with a rare neurological disorder called Rett Syndrome. As a result of Rett Syndrome, her patient was non-speaking and used primarily gestures, facial expressions and eye gaze (low tech) as her means of communication. As a 1:1 nurse, she also attended school, therapies, and doctors appointments with the patient and served as her communication partner. Additionally, following the death of her patient, she began meeting other families who had children and adult children with either Rett Syndrome or other conditions that resulted in the need for complex communication strategies and support. She has spent the past 10 years advocating for educational and medical needs for those families in her community. She believes strongly in presuming potential in all individuals, encouraging and validating all forms of communication and views access to communication and literacy as a right of all humans.

“I do think that once you start shifting your mindset, it really opens up a bigger world of what communication really is than what the average person thinks it is. There's a lot more opportunities to utilize augmentative communication means than we realize, and for populations that we wouldn't normally think of.”

Kinderpublic Guide to Complex Communication Terminology (Part 1):

Complex Communication: A communication strategy requiring multiple approaches or modalities.

Disabilty Inclusion: Including people with disabilities in everyday activities and encouraging them to have roles similar to their peers who do not have a disability. This involves more than simply encouraging people; it requires making sure that adequate policies and practices are in effect in a community or organization. From CDC.gov Disability Inclusion | CDC

Right to Education: Individuals with disabilities have a legal right to access public space and to a Free and Appropriate Public Education (FAPE), established by The Americans with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA), and Section 504. However, many individuals with disabilities must fight to access Free and Appropriate Education, and may be denied access through administrative requirements that they first prove their cognitive ability through extensive and expensive testing, or by independently acquiring expensive language supports.

Eye Gaze Technology: Communication device that is controlled by eye position.

Communication: an interchange between two or more people.

Non-Speech Communication: Communication that does not primarily rely on hearing and speech.

Non-speaking language: Any language that does not rely primarily on hearing and speech.

Multi-modal communication: Communication that relies on more than one mode of expression, such as AAC devices, gestures, facial expressions.

Bilingualism: Just as the syntax of a spoken language, such as French, is not the same as the syntax of another spoken language, such as English, American Sign Language should not be used within the syntax of a different language, such as English. Complex and multi-modal communication is not the same as promoting the use of “SimCom” (the erroneous belief that you can simultaneously sign and speak a message that is equivalent and grammatically correct in both languages.)

Communication partner: A necessary support person, interpreter, or translator, who is trained in the modes of communication used by the individual they support and that of the dominant environment.

Supports: The assistance or additional education necessary to improve access for a disabled individual.

Motor planning: This important [neurological] skill is key to executing movement. It allows us to know, remember, and perform small steps that make a particular movement or task happen. From understood.org What Is Motor Planning | Understood

Motor demands: The performance of gross and fine motor actions by the body.

Physical Therapy: Referred to in the episode as PT.

Neurotypical: An individual demonstrating typical development and abilities.

Authentic Communication: An autonomous message; an individual communicating exactly what they wanted to say. This is an area of ethical concerns in communication access. Communication may not be authentic if select words are restricted or removed from Augmentative and Adaptive Communication strategies, or “hand-over-hand” techniques are used to force an individual to communicate certain messages.

Modeling without Expectation: Modeling communication without expecting repetition or response from the disabled individual.

High-tech Eye Gaze device

Low-tech Playground Communication Board

Low-tech Taxi Communication Board

Low-tech WordPower 60 Basic SS

High-tech AAC Device (Boston Children's Hospital)

High-tech Phone AAC

Low-tech Yes/No Board

Transcript

Season 1, Episode 5 (Part 1) : Communication Access for All in Public Space: Complex Communication Needs with Janae Romano Part 1

Janae Romano, Guest:

Complex communication just really refers to individuals who maybe need adaptive or often multiple approaches to communication. So, historically, these types of communication may have been labeled in a discriminatory way, based on lack of speech. And so, my experience has been that a lot of the individuals that I worked with in the past, and also presently, their cognitive and intelligence [abilities] are still in many cases being measured by their ability to speak verbally. But… those of us who already knew all along that our complex communicators were smart and intelligent and knew a lot more than they could communicate to us… Eye Gaze has really given the proof to that.

[Sounds of train station fade in to background]

[Rhythmic sounds of train passing]

[Subway chimes arpeggio played on mandolin]

Cevan Castle, Host:

Welcome to ‘Towards a Kinderpublic’, a podcast exploring issues in public space, and ways to design kinder space that better meets our interconnected needs. I’m Cevan Castle, and along with Annie Chen, we are Kinderpublic.

Today’s episode is “Communication Access for All in Public Space: Understanding Complex Communication Needs, With Janae Romano”

Janae is a nurse with more than 20 years of experience working with individuals with neurological conditions that impact their communication abilities. She has extensive training in literacy for individuals with complex communication needs, and has worked and trained with leaders in disability inclusion and the right to education for individuals with disabilities.

In each interview on Towards a Kinder Public, our podcast guests share ideas and suggestions for specific things that we can all do to help improve accessibility in public space: whether we are visiting public space, designing it, or operating and staffing it. We can all have a meaningful role in making things better.

But, we would like you to consider listening to this episode as one of the first opportunities to help.

It’s very possible that you’ve never heard of complex communication needs. That’s not because it’s a new disability classification. It’s because non-speech communicators have historically, and are still today, removed and excluded from public space, because we tend to measure cognitive ability by an individual’s ability to express themself in speech.

By listening to this episode and learning about how complex communication works, you may become a possible communication partner for a complex communicator in public space.

You will also learn more about broad opportunities to improve accessibility through the design and operation of public space. This can mean installing or providing communication boards- perhaps you have started to notice these at playgrounds, or on public transportation.

This can also mean structuring space in a way that is not highly verbally dependent: if you listened to our episodes on Hudson Crossing Park, episodes 003 & 004, that park is entirely designed in a way that facilitates multi-modal communication and participation across all abilities.

A note of clarification: language is not the same as speech. Language acquisition is the basis of literacy, and we can acquire language using different modalities, including both signed and spoken languages. And we can learn multiple languages!

Most speaking people have some familiarity with non-speech communication- you may think of a signed language, such as American Sign Language, or ASL. ASL is a complete language that has full linguistic properties, just as a spoken language does. It is visual and spatial, and incorporates embodied information such as facial expressions, body position, eye movement, eyebrow movement, distance from the body, and directionality. You may have noticed it offered as a world language in college and university settings.

Complex communication is a multi-modal strategy, which combines a number of communication methods to meet the needs and body abilities of the communicator. It can combine the use of: gestures, signed language, some speech perhaps, facial expressions, eye movement, pictures or objects, communication boards, and a wide range of apps and technological devices. Some of these devices are mentioned in the interview as Eye Gaze, or Augmentative and Alternative Communication devices (also known as AAC).

It’s very important to know that there are a large number of medical conditions that can impact our ability to rely on speech and hearing for communication, at any point in life. And our bodily communication abilities- which depend on coordinated neurological, sensory, muscle and motor work- can be in constant fluctuation. Every day.

In certain settings, such as Medicine and Education, it’s urgent that we normalize interacting with non-speech communicators.

A summary of the terminology used, and an extensive set of links to learn more are available on the podcast page of our website, kinderpublic.com, under this episode.

We are immensely grateful to have with us now Janae Romano, an Advocate for Individuals with Complex Communication Needs, to explain more.

Cevan, opening interview:

Janae, thank you so much for speaking with me today and sharing your expertise. Can you share a little bit about your background and how you became an advocate for complex communication needs?

Janae Romano, Complex Communication Needs Advocate:

Absolutely. I have been advocating in one way or another for individuals with complex communication needs for about 22, 23 years. And that all started because I am a nurse. I've been a nurse for 23 years, and I spent the majority of my nursing career working in home care. And I spent about 14 years working with a young woman named Kimberlee, who had a rare neurological disorder called Rett syndrome. So I served as her one-on-one nurse, but I also attended school therapies, doctor's appointments, and ultimately I was her communication partner. So she really was my teacher. <laughing>

And back then we didn't really have the internet, so I also relied heavily on her mom to learn Kim's unique non-speaking language. And of course that took some time. And then Kim passed away in 2013, which led to me meeting some other families who had children with Rett syndrome that live locally.

And I was still kind of going through grieving my patient, but also my best friend. I wasn't sure if I was ready <laughing> to get involved with these other families, but honestly it has been such a gift. Um, and so I started there and then it's kind of branched out from there.

Some of those families also had children with other communication needs, not necessarily Rett syndrome. And so I really just have taken the things that I've learned, and then continuing education as well. So I have continued to educate myself as technology has changed and things have changed in the field, so that I can provide the best advocacy that I can for individuals who are not traditional communicators.

Cevan:

Thank you. What does complex communication mean? How does a complex communication strategy differ from the expectations within a mainstream hearing environment using a spoken language? So, what ways or modalities might we expect to use for communication, if we are using a complex communication strategy?

Janae Romano:

Sure. Complex communication just really refers to individuals who maybe need adaptive or often multiple approaches to communication. So, historically, these types of communication may have been labeled in a discriminatory way based on lack of speech. And so my experience has been that a lot of the individuals that I worked with in the past, and also presently, their cognitive and intelligence [abilities], are still in many cases being measured by their ability to speak verbally.

But with advances in technology and especially the realm that I work in- Eye Gaze technology, has allowed those of us who already knew all along that our complex communicators were smart and intelligent and knew a lot more than they could communicate to us- Eye Gaze has really given the proof to that. And so that has changed and shifted the type of access to different communication tools for these individuals.

For me personally, and my personal story with my patient and friend Kim, like I said, it took me a little while to learn her communication style, but I never doubted that she could understand what I was saying. The first time I met her, she was sitting in a low- I always tell this story- she was sitting in her rocking chair, so she was low to the ground. She's a petite little thing anyhow. And instead of talking over her, I just realized like, oh, she can't really see me. So I just kind of dropped down onto my knees to talk to her. <laughing> That was a unique experience because I looked into her eyes, and people with Rett syndrome are really known to have expressive eyes, that's one of the main ways they communicate. It was almost startling how that connection with her eyes, immediately was clear to me that she was communicating, that she knew what I was saying. I was talking about my love of music, and her eyes just lit up because she also loved music and things like that.

So I think when you're talking about complex communication, it's complex, in the sense that different people have different nuances to the way that they communicate. So it may be things like facial expressions, it may be body language, it may be a device of some sort, you know, a technological device, an AAC device, but also, it could be low tech things. So we used a lot of YES/NO boards and visuals. This is, again, before Eye Gaze technology is what it is today. In fact, Kim was part of those studies for the early Eye Gaze, so that they could make it to what they are now.

But there's so many different things and each person is individual. So even if someone has the same diagnosis as another person, their means of communication may be different. So it's really about meeting each individual’s needs in the way that they communicate naturally. And then building upon that.

Cevan:

Are complex communication needs mostly relevant to children, or also adults? And are there changes in communication ability that might happen at different points in life, not necessarily experienced from childhood?

Janae Romano:

So, complex communicators can be really found in all ages.

One of the interesting and amazing things that's happened as a result of things like Eye Gaze is that older adults who are diagnosed in a time where they were labeled as, maybe, intellectually disabled, and were assumed incapable of understanding, are now using something like an Eye Gaze device to communicate for the very first time. Which is amazing.

I know some people personally who've had this experience and, you know, their adult child, maybe in their thirties, had never spoken a word verbally their whole life. And, to be able to have access to say, “I love you,” for the first time, is really profound.

And then on the other end of the spectrum, I always encourage even the littlest complex communicators to be given access and modeling of AAC in whatever form, from a very early age. So, literally, from the time of diagnosis or the time that we're seeing struggles with communication- traditional communication- making sure that all children have access to communication.

Honestly, I have two children myself who are neurotypical kids, but I used alternative communication with them when they were infants and babies. And, I just think that the sooner we can introduce people to different forms of communication, the better it is for everybody.

And then there's definitely reasons that communication needs are going to change through different ages. For instance: a person who has been used to verbal speech all their life may be diagnosed with a condition, maybe like ALS, MS, have TBI, stroke, things like that. And that's going to impact their ability to communicate later in life. And then, in other instances, we have children who are born with complex communication needs, or in the case of Rett syndrome, many of the children are developing seemingly normally, until about a year and a half to two years. So some children with Rett syndrome will speak a few words and then regress and lose that. And then I also know some atypical presentations where- there are boys with Rett syndrome as well, but these are particularly girls- who have maintained some level of speech, although that is not their only mode of communication.

So there's really no, like, “oh, complex communication is only for this age bracket or that age bracket,” but it really can change throughout life, and throughout access. So the earlier the access, the easier it is to learn a language. We know that just, you know, if we wanna learn French or German or what have you, our neuroplasticity when we're younger <laughing> helps us to be able to do that more efficiently.

Having said that, like I said, older folks can certainly learn new skills as well, and usually complex communicators are very highly motivated to be understood. Effort is rarely <laughing> lacking in that way.

Cevan:

What are some of the conditions underlying a complex communication disability that we might encounter?

Janae Romano:

There's a myriad of them. And of course, there's all sorts of very rare disorders where you have one or two people or what have you. But some of the ones that people might recognize, that would affect someone's ability to speak verbally would include Angelman syndrome, Down syndrome, Autism, Apraxia of Speech, Cerebral Palsy, and the other ones that I had mentioned for later in life, like ALS, MS, TBI, and stroke. And of course Rett syndrome, which is my background.

Cevan:

I'm just really struck by what you've been saying.

What does a complex communication language experience feel like?

Janae Romano:

I think this is a really important question, and I can only truly share my experience as a speaking adult who uses alternative forms of communication for those who are non-speaking. I can answer from my perspective, but I've had the ability to speak my entire life.

I feel very strongly that it's really important to ask this question to non-speakers, as they're the ones with the lived experience. And they, from my experience, some of the non-speakers who are now adults, have some pretty strong feelings about <laughing> about what that experience was like for them, through different phases of their life. So I'm always seeking out and listening to what that community has to say. And I really put them as the authority on how the language of complex and multi-communicators feels to them. And so I will share with you some links to some of those voices in the community that have had a personal impact on me.

Because I do think that, in the past, we, as speaking individuals, were always putting that information out from our perspective. And I think it's really important to highlight the actual people who live that every day.

But for me, in terms of learning and working with multi-modal communicators, there's a really huge learning curve, I'll be honest. <laughing> It's really a lot of work at first to figure out facial expressions, gestures. I feel like parents are the next authority, beyond the person actually living it. Because they've known their child since they were born.

So, like I said, with my friend Kim, at the beginning, I was calling her mom at work several times a day <laughing> like, “I tried this, this, and this, and I don’t know what she's trying to tell me.”

And so it really is about becoming a really good observer and noticing some of the more subtle communications, and really focusing on connection and relationship.

I have found across all different diagnoses and things like that, that the fundamental purpose of communicating is to build connection with each other. It's not cut and dry. It's not nice and pretty and wrapped in a bow communication. Even among speaking people, it’s messy, right? Like, we misinterpret each other, or we get upset because, you know, I thought you were saying one thing and you really meant something else. And all those types of things.

Cevan:

Your tone! <laughing>

Janae Romano:

The tone. Yeah, absolutely. So that just is amplified, I feel, in terms of having now another communication barrier.

And then I often see professionals, who initially may be on board with learning some of these strategies, and then they realize it's a lot of hard work. <laughing> It's a lot of hard work to use augmentative approaches! And sometimes they really rise to the occasion, and they take that and they run with it, and they realize like, “hey, if I really wanna have an impact on this person's life, I need to be there for them.”

And then other times, even professionals, they don't implement the strategies because it is hard work. And I always like to point out to them that, <laugh> if it's hard for us to learn this way of communicating, think about the individual who doesn't have the backup of speech. So that we always kind of put the onus on us as the adults in the room, or the professionals, to do that work and assume that our communicators are trying their hardest to communicate with us.

And you know what, my favorite type of communication is dissent <laughing>, because I always, always, always advocate for complex communicators to have some means of complaining.

Cevan:

<laughing> Mm-hmm.

Janae Romano:

Especially when I first started working in the field, everything was so like cookie cutter. Like, they wouldn't give Kim an option to say she didn't like something, you know? It was like, “oh, I like this,” or “I like this,” but what if she didn't like any of that? You know?

Cevan:

Right. Right!

Janae Romano:

And complaining, honestly, is a really strong motivator for most people to communicate. We have opinions. We want to share those opinions, both good and bad. And I do think it's really important that non-speakers have the ability to complain about somebody or even say something mean. Because you know what, that's a right. <laughing> That's a right we should all have, to say, “hey, that person was mean to me.”

And so that's something I advocate very strongly for, in terms of communication, having access to a robust way of communicating with the world.

Cevan:

It's really interesting too, that you mentioned speaking multiple languages, because I feel like, and, full disclosure- I am in the midst of advocating for a complex communicator with your help. <laughing> So, I'm speaking from sort of the beginning steps of trying to figure out how to help my child communicate successfully, and dissent! <laughing> But one thing that has really struck me is that people seem very set on the idea that he must speak one language. And we have a certain way of speaking that language.

It's almost like people don't want to accommodate different ways of expressing ideas, because the goal, as you also pointed out, is always speech. We must get to speech. Speech is the way. Spoken language is the way.

…Very much about accommodating the abled people and the professionals, and not at all about accommodating the person with a disability, who is really working hard, and really being a problem solver, and creative, and trying to get ideas across.

Janae Romano:

Yeah. I think that is a very common <laughing> occurrence, unfortunately. And it's the way our system is set up at the moment. I do see forward progress, from when I first started working with Kim, which was 20 some odd years ago, but it's very like turtle-speed progress.

Cevan:

Mmm-hmm. <affirmative>

Janae Romano:

And it really depends on where you are, what school districts you are in, what administrators are there, how up to date they are on neuroscience and continuing education, and all of these things. And, unfortunately, funding is always another thing.

When I am in meetings for advocacy, for supports, I always say, a lot of the people I work with need a communication partner. So, a one-on-one [aid] who is trained in the modes of communication that the student or individual uses to communicate and to help with those supports. And we often will get pushback on that, but I always say, you know, if you had a child who was not a hearing child, they would have an interpreter. And so, this is essentially the same ask. You wouldn't send a non-hearing student into a classroom and just sit them there. <laughing> And those individuals with that disability have had to fight to be included in the educational system.

If you have a student who doesn't… English isn't their first language and their school is a predominantly English speaking setting, they're entitled to that interpreter to help them.

And so it's really about thinking of communication as a human right, and thinking about it from the perspective of each individual, versus, like you said, us abled individuals trying to have people conform to what's comfortable and easy for us. Because even with all those supports in place, it's not easy for our complex communicators.

One thing that I learned working with a non-speaking woman for so long is that, even though she didn't have that ability to speak, her communication was one of her strengths. <laughing>

So everybody saw it as this deficit, but she had honed non-verbal communication cues so well, because she had to. And even in her classrooms, she was always trying to interact with the adults in the room versus like maybe the other students, because I think she was always trying to prove to people like, “hey, I'm trying to tell you something. Hey, I understand.” And when she would find those people who really got that, you could see how much more motivated and how much effort she put in to doing that.

And so she honestly is one of the people, that I think, that I've known in my lifetime, who was the most efficient communicator. I always joke that she could look at your eyes and like, know who you were in your soul. <laughing> But I think it's mainly because she had honed the skill of reading people's non-verbal communications.

So those of us who speak, because we value that speech, we tend to tune out some of those more subtle non-verbal communications. Where for her, that was everything. And so if I was having a bad mental health day or something and I was working with her, and I would try and put on my happy face, right? I could never trick her. <laughing> She always knew. So I finally gave up trying after, after a fashion, you know, because she could just read my body language, the energy I was bringing into the room. And so, I do think that shifting our mindset from looking at everything as an efficiency versus where are the strengths is a really powerful point- moving us forward as a society in recognizing and valuing different types of communication.

Cevan:

…The idea of looking at someone's strengths and then helping to fill in the resources that draw on the strengths, rather than going first to the diagnosis and then taking from a preconceived list of resources that we think we want offer people of that particular diagnosis.

I say that only because that's one of the frustrations that we've had, is that, you know, my child did not have a hearing diagnosis, so he was not allowed to have sign language. But he was very successful with it! It was a disappointment that he wasn't allowed to have that as a support.

But that's an aside.

Janae Romano:

No, it's not an aside because it is the experience of so many non-speaking individuals.

I just watched a beautiful video from a woman who is autistic and uses Augmentative Communication Devices (AAC) to communicate. And she does such a beautiful job explaining how everyone should have access to what they need in the moment. And so for her, you know, just saying, ”oh, you can only use this device, or this app,” is very restrictive and limiting. From moment to moment she may, or depending on the situation and the type of communication she's trying to use, one resource may be more beneficial for her than another.

And so I see this a lot where, after, say, a student gets a high tech AAC device, well now that's the only thing that they can use to communicate. And it's the same thing as saying speech is the only thing that you can choose to communicate! And truthfully, we, as speaking people, we are using multiple modes of communication. Speech is, you know, the primary, but we do use other forms as well. So I do think it's very relevant to point out that we really shouldn't be restricting people's access to tools.

There for years has been this kind of stigma of like, well, if we give a student who's not speaking a communication device, well then they're never gonna speak. And of course, that's always the end goal, right? But it’s just not true. <laughing> If they're going to develop speech, they're going to develop speech. <laughing> If they're not, they're not. Whether they have a device or not in the meantime, is only going to help them not be frustrated, to be able to share their thoughts and feelings in the meantime, and… still promoting language, still promoting communication.

So a lot of old kind of thinking, you know, it takes time to educate people and help them see there is a better way to do things. And some of the folks that I work with have some really complex… lots of tools, so that there's a practical side to this that can be challenging. You have a bulky device perhaps, and then you have low tech communication boards that you want to bring in case they need those. And then you have a communication partner with them, and all these wonderful tools. And there's the logistics of trying to make everything accessible without overwhelming them as well. It's definitely a challenge, but I think that people's ability and right to communicate makes it a worthy challenge for all of us to pursue.

Cevan:

What you've just been saying leads into the question that I wanted to ask you next, which was, is communication disability an ongoing and consistent experience for all individuals? Or can communication needs vary from day to day?

Janae Romano:

Absolutely. The phrase I always teach support staff first is “consistently inconsistent.”

So, with Rett syndrome, one day a student will be able to do X, Y, Z, and then the next, their body just doesn't allow them access to do those things. And that can be incredibly frustrating for the staff, and hard to make assessments of like, you know, what level of, you know, learning is happening.

But again, I always bring it back to the individual. Well, if it's frustrating for you, think of how much more frustrating it is for the student who yesterday could show you one thing. And then today their body has kind of trapped them, and they, and they can't express it the same way.

So it certainly can change from day to day, minute to minute, moment to moment.

One thing that I always talk about with Rett syndrome, and other individuals who have motor planning challenges, is that whenever we are increasing the intellectual demands- so, say, maybe working on a math problem- we have found success in decreasing the motor demand. So it, again, is gonna be nuanced and personal. Um, but as a general rule, when we are using the prefrontal cortex to process that math that we're being asked to do, other parts of our brain will cycle down a little bit. And so, we don't want to be asking all those parts to work all at the same time. So we maybe will go to, like with my students with Rett syndrome, oftentimes I'll go to a low tech YES/NO [board] kind of thing.

For something like math, we can do a multiple choice. “Is the answer this? Yes/no. Is it this? Yes/no,” kind of thing, because they're not having to work as hard in the communication aspect, they can focus on the academic tasks that they're being asked to do. And then conversely, when the academic or the intellectual demand is low, then you'll see that the demand for the motor planning is a lot easier for that individual usually. So, you know, maybe if they're working in PT or something like that, where there's physical gross motor skills being done. But also just navigating a device is a motor planning process, especially with Eye Gaze. So I find that, especially at the beginning: games, fun, play.

We undervalue <laughing> the power of play, in people of all ages, honestly, it's not just for children.

But I get this a lot when students get a device to communicate, it's like, “oh, we don't want them to play cuz we want them to think of it as X, Y, Z.” And sometimes that's, especially depending on the background of the child, that may be appropriate. But a lot of times: they’re kids. If you think of a neurotypical kid learning to speak, they babble right before they speak. And so that's what I consider it. I consider it babbling. They're learning, they're playing with the device, they're playing with the sounds, they're playing with how to put things together and how to find things. And that's a really important part of the process. If we just cut that out and say, “hey, no, you have to, I asked you this question, you have to… these are your choices,” that's not authentic communication.

And in fact I like to encourage, especially the little ones, and really anyone who's getting some new tool to play around with it, see what happens. And then for those of us who are on the other end, as a support, to play back. <laughing> To have fun, to create an environment that's welcoming of miscommunications and silliness and goofiness. Because like I said, you know, that's a natural way to learn communication.

You know, you think of even just little kids blowing raspberries for the first time. And then the parent does it back to them, right? So, being silly, showing that communication doesn't have to be perfect.

That is a huge source of anxiety that I see from complex communicators, is that they're so afraid to make a mistake because essentially every attempt they feel like they're being judged, their intelligence is being judged. So they're really afraid to make those mistakes. So, modeling that as the adult in the room is really, really important because we all make mistakes when we communicate. And that's just part of being human.

Cevan:

Right. And one thing that you've said to me before is not just modeling, but modeling without expectation, which really changed so much for me when I heard that phrase. It's modeling, and expressing joy, and expressing acceptance, and understanding that things are not going to be the same every day. It's such an incredibly different viewpoint.

Janae Romano:

Yeah. And again, I think that the individuals who've been trying to educate others on some of these things within the community, these are the people who are really seeing the whole person and who are the problem solvers of the group, and really thinking about, “what's the natural way people learn to communicate?” No matter what language you speak, or any of those types of things, and then realizing, all children are exposed to language long before they ever say a word. Take for instance a baby, and you're saying something, and then we make meaning out, out of the little noises that they make. They'll start to play around with their mouth and babble and all that. And you say, “oh, oh, buh buh, baba, you want your baba!”

They may or may not have been trying to say that, but because we're excited about it and we're connecting. Again, going back to that connection and relationship…

Cevan:

Right.

Janae Romano:

…our eyes light up, right? When we think that our child is trying to communicate with us. And it's the same. Same thing. At the end of the day, our complex communicators are just people who want that interaction, want to be understood.

And so, when we model in a way that is just a natural part of our conversation, it takes so much pressure off of them, number one, to perform. A lot of times modeling doesn't even happen. But when it does, a lot of times it's in the approach of testing. Right? But that's not <laugh> that's not a natural way to learn to communicate

Cevan:

Mm-hmm. <affirmative>

Janae Romano:

A parent might encourage a child to say something, but we're not judging their entire existence and intelligence based off of whether or not, you know, a baby is going to say a sentence.

For another family I'm working with right now, I'm working on a post for her school team up specifically about modeling without expectation. And so I can share some of those things with you as well. I found all sorts of really great resources for people who are interested in learning about what that looks like. Because saying it is a great idea. But then, like, what does that sound like? What does that look like?

We often talk a lot too about, like, expectant pausing. <laughing> Where, we may be saying something, and then because we speak and we tend to speak really fast, our communicators have to work harder to get their bodies in order to reciprocate. And so, just adding some pausing in there.

I like to do what I call broadcasting. <laughing> I just state what I see. “Oh, I can see that you're getting your body in order and you have something to say to me, so I'm just gonna wait for you.” Or, “oh, I see a huge smile on your face when you're looking at that cupcake. It looks great. I would love to just dive in,” and then just pause, you know? And they’ll respond with some sort of output, as it's termed, but I guarantee you there is some sort of communication response even when it may not be the one that's expected. So, in that scenario that I just said about a cupcake, “you’ve got this big smile on their face.” And then when you acknowledge that, even if it's just a look to you to say, “hey, yeah, they noticed that!”

Right? That's communication. They may not be responding on their device, “I want cupcake,” but they are acknowledging, and there's an interchange between two people. That is communication.

So I do think for those of us, especially people who've been in the field a long time, this is a big shift, and it's really something that takes intention to shift.

And honestly, I use some of this with my own speaking children, that broadcasting that I was talking about, especially when they're struggling with something.

Cevan:

Yeah. Yeah.

Janae Romano:

Maybe it's just an interpersonal.. you know… I have two boys and they get along 99% of the time, but… instead of interjecting and taking over, one thing I've learned from my friends, is I think sometimes as adults, and this goes beyond communication, I think as adults, the way we think about and treat our children <laughing> can benefit from some of these principles too. Not rushing in and trying to control every situation, but letting kids figure out how to do these things builds their confidence.

And I see that with communication too. Um, sometimes when we're trying to make everything so cookie cutter, it's not that people have bad intentions, but what that does is sends a message to the communicator, if you don't fall in line or if you don't fit in this little box, then your method is less valuable.

Like I said, that's not a message we want to be sending. All communication is valuable. Every form of communication is equally valuable.

In our society, a lot of people, like you said, only value speech. But there is so much that we can learn if we broaden our horizons and open ourselves to learning from individuals who have other modes of communication. I know that it has literally changed my life, <laugh> that I lucked into meeting Kim when I did- I'm positive that I am a different mother, having spent 10 years working with her prior to having my first son- than I would have been without knowing her. Even just little things like- when my son was an infant- because I had spent so much time looking at those non-verbal cues, I was able to determine, you know, the needs of my children when they were very little and couldn't speak yet… I knew to introduce them to multiple methods of communication when they were little.

So I think those of us who are speaking, honestly, are doing ourselves a disservice not to elevate the voices of those who have a complex communication need, because there's so much value there.

My younger son has epilepsy, and he is conscious during his seizures. For years, his only real symptom that we realized was anxiety. But, I don’t know, one night he was really upset. And when he- my son started speaking very, very young, he was speaking in full sentences at nine months old- however, when he's having seizures, his ability to verbalize diminishes and is next to nothing. Again, because that part of the brain is turned off during those types of episodes. But because of the background I have, I have all these tools.

So I would pull out a low tech communication tool that I have from one of my friends with Rett syndrome. And his anxiety during his seizures decreases because he can communicate with me and connect with me and let me know how he's feeling. And I do the same. And again, I'm using the communication device to communicate with him as well.

I do think that once you start shifting your mindset, it really opens up a bigger world of what communication really is than what the average person thinks it is. There's a lot more opportunities to utilize augmentative communication means than we realize, and for populations that we wouldn't normally think of.

Cevan:

Yes!

[Sounds only for a few seconds, then fade into background]

Cevan:

Subscribe to Towards a Kinder Public on Apple Podcasts and leave us a rating and a review, we would love your feedback. To share information about issues in public space, and spaces that are doing things right, email podcast@kinderpublic.com.

Links to more information about the guests and topics mentioned, as well as a full transcript of the conversation, are available on the podcast section of our website, kinderpublic.com. Visit our website to learn more about our work.

I’m Cevan Castle, our guest has been Janae Romano, Complex Communication Needs Advocate.

Thanks for listening, I wish you a good week!

[Sounds fade out]

Mentioned in this episode:

Playground Communication Boards

https://smartysymbols.com/what-are-the-benefits-of-a-playground-communication-board/

Further reading:

Jordan Christian:

https://fightingformyvoice.com/about/

Alexis’ Message:

https://www.youtube.com/watch?v=hxiZdRx0Wzc

Spellers & Allies Advocacy Network