Ask Me About AAC with SLP Ali Steers

Speech and language pathologist Ali Steers explains augmentative and alternative communication (AAC) devices and programs as well as how students are assessed for AAC in this Undivided Office Hours event.

To learn more about AAC, check out our full article Augmentative and Alternative Communication 101. You can also check out our recap of the highlights here.

So, really excited to jump in today to today's office hours on all things AAC with Ali. I'm Jason, CEO of Undivided. I'm here today with Lindsay, who heads up our content community teams at Undivided. Hi, Lindsay. Hey, everybody.

You ready to rock? I am. I have to say, we were talking just a little before. We escaped to Joshua Tree for the weekend, so we were at one with the boulders. So I'm, you know, ready, ready, ready to tackle, tackle the week.

And we welcome back SLP and Augmentative Alternative Communication specialist Ali Steers. Ali was previously the SLP at the fully inclusive Chime Charter before starting her own practice, Steers AAC language and speech. She provides services to non-speaking children with complex communication needs here in Los Angeles. Hi, Allie. Welcome. Welcome back.

Thanks so much for having me. It's good to see you, and good to be here again.

I've been looking forward to this conversation since we last talked in December. You shared just a number of like helpful tips and totally blew my mind with some of the kind of frameworks that you use in working with kids and families, and I've been able to apply some of them over the last month, which has been great, so can't wait to learn more and really dig into the questions that our families have.

Before you know, as we're, as we're getting questions, Ali, we wanted to reinforce some basic principles around AAC. So, when, when should a family start considering AAC for their child, and when is too early?

As a family, if you have an inkling of perhaps your child's going to have a different journey in terms of communication, that's that's when you should be starting, and for some children that's straight out of the NICU, for some children, that's a little bit later on in life, when maybe the family realizes that the words aren't coming as anticipated by the time the child is maybe two, two and a half, but for young children that have diagnosis that would indicate that communication is going to be a challenge. Verbal speech is going to be a challenge, kind of coming, coming out of the NICU, then linking in with an SLP is that's not too early.

And there's a lot of kind of misconceptions surrounding that, that we need to wait until the child is 18 months or two years before we are, before professionals, even physicians are making that referral out, but if it's a known, if it's going to be a known area of need, making that referral when they're young, so that we can get started when they're young and provide them all of this great language stimulation during those period, that period when, when, when all children get this great language stimulation, their parents are talking to them, and playing with them, and interacting with them, and, and no one's expecting them to speak back, but that doesn't mean that they're not learning the language, that language just isn't coming back to us until that child is 12 months or 18 months, if it's a typically developing child, if it's an AAC user, we can get in with the system, get in with, with speaking that symbol-based language to the child, really young, and get that language coming back to us on a level that's more on par with with the speaking peer, so it's it's really never too early.

It's also never too late, so if you're a family and you're listening and you're like, oh, my kids, or my child's 12, or my child's 22 I had a 34 year old in my office yesterday, and, and that individual hadn't ever had a great way to communicate, and, and the mom said, I know you only do pediatrics, and like, no, it's communications for everyone, and, and you know, you're here, and what matters is, is we can, we can, we're gonna, we're gonna move forward from here. So just know, as a parent, that it's never too early, it's never too late. There's never a wrong time to begin this journey, and some families just really AAC is a lot, it's a lot, and it's hard, and anyone who tells you otherwise is, is not telling, not speaking the truth.

This journey of AAC is a challenging one. Many of the families I work with have children that have many needs in many different areas, so feeding needs, positioning needs, health needs, seizures, things like that, and, and throwing AAC on top of that, layering another hard thing on top of something that's already hard. Some families just, it's not a good time for that, and that's okay. And that's something that I tell families when I start with them, too. Is come this, this is a lot, and this is what it is. When you're ready, if now, if now is when you're ready, great. If you need. A bit of time, that's okay too, because everyone's, you know, you, they're all moving along their journey wherever they are, and, and as a professional, myself and others need to be really conscientious of, of putting on too much and layering on another thing on top of an already challenging situation.

I have to ask, you know, when, when my daughter was young, you know, our regional center service coordinator at the time, you know, really told us, like, you don't need to ask for speech, like, you know, we don't do that until about three, right, and they're trying to, you know, not trying, but it seemed like it was going to be coming after that early intervention phase, and thankfully, other parents told us, you know, from the beginning, like, you know, start start that journey, you know, while you're in early intervention, so you're really laying that groundwork for what your child needs, which makes that transition easier. But I don't know if you have four families whose kids are regional center clients. Is there anything that you would want to share tips for for getting that going before three, or is that something that you commonly hear?

It's a common issue, and, and I think you know, you all being the undivided team, the families being their child's own best advocate, you have to, you have to go in there, and you have to say that this is what I want, and this is what my child needs, and, and I am not taking no for an answer, because my child is a child that's going to struggle with communication, and all of the research says that earlier is better. There is, there's no shred of research out there that says that it's okay to wait until a child is three before we start introducing them to aid in language, if it's a child that has a known need in that area, there's there's just there's no good reason to wait, and maybe that service, when I work with a very young children, that service is very consultative initially, it's not traditional speech therapy, where you know it's a session kind of thing, where I'm sitting with a child, I don't, for a lot of reasons, AAC doesn't often look like that anyway, but it really, when a child is very, very young, there's a big focus on just let's, let's pick a language, let's get that language going at home, let's get other individuals, grandmas, aunts, uncles, cousins, whoever is involved in that child's life, familiar with this language, so that everyone's kind of on board with this plan, so it's, it, it can look different when they're really young, but it doesn't mean that it's not appropriate, it's we need to look at the physical development piece, you know, the PT and the OT, those are referrals that get made out of the NICU speech is often not one, and I think we do need to have a bit of a paradigm shift surrounding that, where parents need to go in and say, hey, how come, how come my child got PT and OT referrals, but, but where's, where's the communication, where's the speech coming in, and and just continue to advocate and say that that my child is going to have needs in this area, and I don't want to wait, and, and, and if let's say that child turns 12 months old and they start babbling, and we see kind of more of a typical language trajectory, then great, that's that's great, but that's, you know, we can, we can, we can pare down the AAC, or we can do something different, or let's say they're they're a child who we think needs scanning, and then they suddenly get really nice use of their hands.

We can change and morph the system as the child grows and develops, but as far as really introducing that language early on, there's no reason to wait for that. It's the same way if I want my child to be bilingual, I want my child to be bilingual. I'm going to speak Spanish to them from the day they come out. I'm, they're going to hear Spanish when they are in the womb, and they're going to come out, and they're going to hear more Spanish and English, and they're going to hear good models of both. And then, when they're ready to start speaking, they're going to speak both fluently, because our brains are wired to speak multiple languages. Our brains are fascinating, and it's so sad to me that we live in this kind of monolingual American culture, because I think if we exposed our children to more languages, you know, we could, we could earlier on, they could be fluent in, and kind of more global citizens earlier on, and I really see AAC as the same way, as it's just another language that we can expose a child to, especially if a child needs an aided language, needs a way to communicate in a, in a way that is not with verbal speech.

I love that, that's that is what what Lina really got, and still gets, obviously, but from sign, you know, she was, she was signing before she was ever saying anything, you know with words, so you know, we saw she had, you know, she definitely had plenty to say, and she was able to, you know, really start building that at an age way before she would have been able to with spoken words, so, so true.

Yeah, and it looks like we've got some folks in the chat who really did that, advocating. Early on, and getting that support early on, but it, like, I think, as Evie, Evie says, I think our seat regional center should provide SOP to children early on, not until after 24 months. The same thing, kind of an amen, of like this, and you know, we've talked in previous sessions, Lindsay, about behavior being communication, and just to both of your points, like having multiple modes of being able to communicate your feelings, your emotions, your wants and needs, like the more the merrier, right? like to really give the kids access to to be able to communicate. One of the questions that came in here in the chat, was this is interesting, kind of getting to the ability to augment. I have a 14 year old who is verbal, however, he has Down syndrome and struggles with communicating clearly and effectively. An OT we highly respect suggested an AAC might help him express knowledge and his ideas and needs more than he can currently do, you have any thoughts on this, or experience slash suggestions.

So, it sounds like we're, we're, we're in kind of this really challenging area of AAC right now, and that's in this population of individuals that has speech and is perhaps intelligible or understandable to their family, but then others in the community might not understand that person as well, and, and this is, this is, I will tell you right now, AAC is hard. This is the hardest. So, this, this little chunk of the population is a really, it's a very challenging thing, because the user communicates, and the user has speech, and the user has a way to communicate, and if that system is not really efficient, really effective, really well designed to do what that user wants it to do, then it will be abandoned 100% of the time, simply because speech is easier, and, and, and the reality is I can take three minutes to formulate my message on a device, but even if my speech is not super easy to understand, it will take me less than three minutes for me to get you to understand it, so for some, for some, this, their speech really is very difficult to understand, so it's kind of a give and a take in terms of, you know, which tool is going to be better in that moment, and really, what it takes is a savvy user, a savvy SLP, and a savvy family, because this situation works, but we do have to show the user that there's a communication breakdown, and for whatever reason, and here are some ways you can repair it.

We can, we can spell a word if it's an individual who has literacy and is able to spell. We can, we can use more of a text-based system if it's an individual who requires a symbol-based system, then we can program that system in a way that phrases that that individual is likely to use a lot or gets very frustrated that people don't understand a lot are more easily accessible, so so they're like there's a case case study. There's an individual who worked at a theme park, and he was someone who, to his family and friends, was very intelligible. Most, most people who are familiar with him understood his speech. The guests at the theme park struggled, so he had an AAC device with him that had some of those frequently used phrases that he used in his job when he was interfacing with the public, and and he used that very effectively, and that got him through a lot of communication breakdowns.

So, with this kind of subset of the population, absolutely, we all augment our speech, all of us, we are all sending text messages, emails, we're all writing down things for people, leaving notes for people, that's all augmentative communication. We're all using alternative ways to communicate, so sometimes just finding kind of the right way to do it in a way that's efficient and effective for the user is the crux of making that type of scenario successful. So, to answer that, that's a long answer to the question. The short answer to the question is yes, get the eval, because if there, if there is a communication breakdown, then then there's a need,

yeah. Yeah, that makes sense.

Yeah, and Carrie, that was speaking to me as well. So, thanks for that question and definitely.

So, one of the things you opened our eyes on, and this came in before on RSVP, is just this, the notion that is AAC, just high tech, right? But it can be a range, right, from low tech to high tech, and depending on the needs, and even in cases like you shared last time, why not both, right? Like to have it everywhere.

Absolutely, yeah. So every every user should have a high tech or a computer dynamic display iPad, whether it's an iPad or computer or dedicated communication device, they should have a high tech way to communicate, but then they should also have a no-tech way to communicate, because the reality of that high-tech device is the battery dies, positioning is not ideal, especially if we have like an eye gaze user, someone who's using a switch to scan.

So, maybe, how is that user going to communicate in the bathtub or the swimming pool? How are they going to communicate when they're laying in bed? How are they going to communicate when they're chillin, watching TV, and they're not well positioned in their chair. There's devices that break, devices go in for repair, screens get broken, batteries die, things like that. So, there's always, always, always going to be a need for both, and, and one is not better than the other. So, there is kind of a sometimes a misconception that well, my child uses an iPad and your child uses a book, and and the book is somehow inferior to my child's iPad, when really language is language and communication is communication, and and if that child prefers that paper-based system, that book, and there's a lot of reasons why kids prefer books. Us as grown-ups, we like the technology because technology is familiar to us. We grew up with technology, we, it's fast, it's efficient, it's I can press a button and something happens, and I can program on the spot, and us as grown-ups, we're biased towards the technology.

The book is heavy and cumbersome, and oh, we have to like print something. Who has a printer? So, there's that part of it, but when we think about young kids, young kids love turning pages in books. Young kids like paper. Paper teaches this idea of paging, which in an AAC system is really a very important thing. If I'm using a high-tech screen, let me just pull up the one that I was using during my last session that I have in front of me. If I'm using a high-tech screen, then I have this idea that I can go to a page and another page pops up. For a very young child that doesn't have experience with paging, that can be kind of a hard thing to wrap one's brain around, of like, why was I on one page and then something else happened, and how do I get back to the homepage, because that has all of my main words on it, and that's, you know, versus if I'm using, let me grab another one here on my desk. If I'm using a communication book, then I'm telling you that something's wrong, and I'm going to the something's wrong page, that that act of actually turning the page can be very kind of grounding for a lot of kids, and and just make a lot of sense to them, and it teaches them that there's vocabulary that's hidden behind other vocabulary, that that when a child sees this, they know that these are all the words that I have.

When a child sees my iPad, then they're, you know, like, well, how, how big is this? Is this 10 pages of words? This is 1000 pages of words. So it can be very, very concrete to use paper as opposed to technology, of course. There are all of those other benefits to technology that I mentioned before. So, it's not a, it's not ever really an either or. Personally, I like to start individuals on paper in a paper-based system. Paper-based systems require a partner, and when a child is learning to communicate, having a smart partner there with you who can read kind of some subtle cues that may or may not be happening makes the learning process a lot more forgiving than it does with a high-tech system where something just happened and I press the wrong page and or button. Now I'm seven pages in, and I don't know how to get back. Partners can read the frustration, they can mitigate some of that. Not to say that partners are speaking for the child, they're not, but having that smart partner interface in a meaningful way can really aid in the learning process.

I have a lot of follow-ups to that with the partners, but I did want to ask, because you, you just showed those two communication systems, and I think it's well, okay. First, I wanted to, not the low-tech option again, that was really hitting me on a personal level, because my daughter has hearing loss, so she wears hearing aids, and that's something they talked about from the beginning. What happens when she's in the pool, or, you know, believe me, those hearing aids break, or something happens, and so the fact that she, you know, can use sign language, and then you know if she also then has a device, you know that well, that's a different high tech, but I love that if she is there, she, she wants to take a break, which she frequently even does at school, she needs to turn off because it's too much, she takes them off and she just wants to sign, and her aid signs, and it's really important, and I, and, and if she, you know, if she wants those off, that then she's not cut off from everything happening around her.

And then, when you were showing both the low tech and the AAC, we had a question that a parent asked, and I think it's a really good one, and it makes all, it also makes me think of my daughter, but it says, What app is best for a child with visual challenges. My child can't differentiate when there's too many pictures and they're so close together all at once. So, what do you recommend for kiddos that will help? Because I look at, like, when you were showing that, like, my daughter, she has CVI as well, for impairment. Yeah, be able to differentiate, which sounds like this parent might be having the same issue. So, what do you recommend?

Absolutely, most of.. so my kind of niche population is CP CDI. So many, many, many of the individuals I work with have diagnosis of cerebral palsy, and they also have diagnosis of cortical visual impairment. So this is a kind of a very specific area of visual impairment, which is different from other visual impairments, but to answer that question, when we think about someone with CVI, we think about less clutter, we think about black backgrounds, we think about high contrast colors, we think about reduced environmental stimuli. We think about novel environments versus familiar environments. These are all things that we know are affect vision into individuals with CVI. So, there are options. Yay! Because it didn't used to be so. That's exciting.

I, my mentor is Linda Burkhard, and she also is very passionate about this population of individuals who carry these diagnoses, do dual diagnoses of CPS and CBI, and she has put a lot of time into addressing the communication needs specifically of this population, so something that she has developed is like this is a pod one per page and companion book. This companion book is the book that we use to talk to the user, so if I'm telling you that I have something to say, I like this, this is awesome. That's how I'm talking to you, and then if you have something to say, I'm scanning you through this book, so I'm doing a one by one scan, so chat words, and you're I'm waiting for your response, maybe you're saying no, something is wrong, no, I like this, yes, and I'm going to the I like page. Great, awesome. Yes. Oh, it's great. That's awesome. You think that's awesome? I do too. So, that's how that would be. That would work. And this, this system works. I've used this with eight month olds.

This system is an awesome system, not a commercially available system. So, Linda and Gail, Linda Parker and Gail Porter, they're the Gail Porter's the mind behind Pod, which is just one AAC system. I lean into it a lot because of what they've developed, because again it applies to the individuals that I work with, but this system is in development. It will be commercially available soon. Linda has promised me, because I'm like, Linda, people need this, and it's if you work with a SLP who is pod trained, and they have attended the Advanced Pod five day training, or if you, as a parent, attend the Advanced Pod five day training, which is open to not just professionals, parents too, then you can have access to these templates, so. With individuals with visual impairment, there's there's a lot of, so this is one option. Another option might be like a like this kind of a book, again, CVI symbol set. Mine's falling apart. High contrast symbols.

This one I've made it so that we can teach this idea of a column scan with column scanning, or I can pull off the column and show you that this is a group of items, and this would be something that I might consider. I'm just going to, this is a non-pull-off page, I might consider using with someone who has a vision impairment, but again, when we look at at individuals with CVI, for some individuals with CVI, this is too much, this is, this is even, even, even though it has a back, black background, high contrast, sometimes some individuals are working so hard at looking and visually processing that the message is lost, that they're, you know, I'm concentrating so hard, but I forgot what I wanted to say now, because I'm trying to figure out what I'm seeing, which we know with with CVI visual processing is is taxed, so there's other options in development.

I don't know if I have them all here with me, I'm just pulling out what I have other options in development that accommodate for some of those visual challenges as well, so like this one has one symbol as an anchor, and then it has a lot more vocabulary on the page, so maybe for someone with more significant CBI I might lean into this type of a template, more so I think, and then we have individuals who are, they don't have CVI, and maybe there's something else happen happening visually, and we can look at reducing the number of items on a page, increasing the size often, maybe keeping them the same size, but then spacing buttons further apart on a page, so there's lots that we can do to make the system accessible, and this kind of gets into this other point of it's an individualized education plan, and it is an individualized system, and it is an individualized infant development plan with IFSP.

What does that stand for? In individualized family service plan, sorry, I threw that one out there, my point is that it's individualized, right? So this system, there is not a one size fits all anything ever. Just as our children are all beautiful individuals, you know, we do have to look at what is this specific child need. Some I work with a little girl, significant hearing impairment, significant visual impairment, cerebral palsy, and, and, and we got to go really individual biased for her, and that's just that's that's what it is, and just because there's there's layers happening, it doesn't mean that there's not a way, so what I don't want parents to hear is, I don't want them to hear, hear me talking about this, and say my child is too whatever for communication, because no child, no child in the history of children, no individual in the history of individuals is too anything to communicate, it just takes, takes some figuring sometimes, but that's the part I don't know about, about others, that's the part of my job that I love, like I love getting a really challenging kind of, like, all right, like, okay, we're gonna figure this out, we're gonna, you know, because ultimately we all like to be problem solvers, and you know, it's okay, we gotta, we gotta, we gotta, you gotta work through this, and, and it takes time, and it takes persistence, and sometimes the first thing we do is not successful, and then we have to go back, and, but just like anything, it's, you know, where there's a will, there's a way, right?

Just like anything for our kids, and I think that's that's the huge takeaway, is that it's people are used to seeing like that proloqual or that all those images and think this isn't going to work for my child, and just remember you find you find the specialist that is going to see that you know to make sure that this is right for your child. There is no, I mean, you can do something out of the box, but if somebody's saying this is all there is, and you know it's probably time to talk to somebody else, right? There is, there is a way, and I think that was it, was great for you to show us all those different examples, like depending on what that kiddo needs to see, there is a way, it is work, but there is a way, and that the whole idea is for us to make sure that all of these children are able to communicate in whatever way works for them, and like you said, the key. Accessibility and finding the partner that can really help guide your family and work with you.

Well, this is a good setup, I think, for Christiana's question, which is one of those fun myths, right, that keeps proliferating. Right, parents are often told to choose between AAC or speech therapy. How do you respond to this, and I heard this as well, Christiana. So, I feel you for sure, like it's seems like I don't know, you think this would be out of out of the air, but it's still out there.

It's, it's unfortunate that that's still a discussion that we're having. It's, it's never, it's never an either or. I know the last time we spoke, we talked about how you know there's a.. we need to think of communication as a big pot, and, and, and we're going to throw as much stuff as we can into that pot, especially if we have an individual who is already struggling with communication, that we're going to, we're going to throw in sign language, we're going to throw in AAC, we're going to throw in verbal speech, we're going to, we're going to do it all, and then my voice, my choice, right, whatever that individual, whatever the user chooses to, to use, that's on them, but, but as professionals and as parents in, in our child's lives, making sure that they have exposure to all of the different tools, so that they can, they can do what works for them, and what works for them in a given moment might be different in another given moment, like we talked about.

Sometimes there's users that communicate one way with family and another way with with the public, and that's okay, but the idea that that parents are being are being asked to choose, do you want, do you want to work only on verbal or do you want to work only on on AAC, is is just a there's not a there's not a reason for that question. The reason for that question, sadly, is ignorance. Is that there's people that just that just and fabulous, lovely, well-meaning professionals that maybe aren't comfortable with AAC. The reality, and let me, let me level with you about my profession here for a minute. I, when I, when I graduated with my master's in speech pathology, I had one weekend seminar for two days on AAC. That was it, that was it, right.

So, so new grads, SLPs, maybe it's different now. That was 15 years ago that I went through school, so could be different. I hope it's different, but there are also aren't many. There's not a big focus on AAC in school, so when I think about as an SLP, how much training did I receive in facilitating verbal speech versus how much training did I receive in facilitating the aided symbol use of an AAC user, I mean, we're talking about, like, let me give him an example this way, like verbal, oh my gosh, it's class after class, after clinical, after course, after, after, you know, just experience in verbal speech, that's what we're trained in, and then, oh yeah, sometimes there's kids that don't talk, and then there's these symbols, like that's it. So, so I think that there's also this kind of this bias towards, okay, so my child goes to a speech therapist, that speech therapist is probably going to work on verbal speech.

They might know in the back of their head that this child needs an AAC system, but they might not know how or which, or how to use it, where to get it, why to use it, all of that, because it is such a specialty. So sadly, my answer a little bit to this question is sometimes just like when you are someone that has a complex medical need, you go to the cardiologist for your heart and you go to the pulmonologist for your lungs. Sometimes it takes that type of an approach to intervention where you go to an SLP that focuses on the verbal speech, if your child is needing that, then also visiting the one that special, whose specialty area is AAC, and then in a perfect world those people talk to each other, and and we can figure out how to approach this in a team in a collaborative way that doesn't always work out that way, but it's kind of the unfortunate reality of the situation.

It sounds like special education. I just have to say it's the same when you hear, and all the work they're trying to do around credentialing, you know, so teachers are exposed, and you know you're a teacher, and that you have expertise. Is all across sounds like we need to do some advocacy in the same way with speech language pathologists and what they're learning as well. That's appalling.

Yeah, it is one of the things you shared with us last time, Ali, that I think fits to this well, but was really a foundational explanation for me that was missing in my head and life, which is this notion of access versus language, and really for ourselves, for our kids, and for those who are meant to be supporting our kids, like breaking that down and really thinking about the two and how they work together, I think, is really helpful. So, you mind kind of walking us through. We talked earlier about throwing everything into a pod, and some of it is access, but all of the foundation is language, and giving the kids the tools for language. So, mind walking through that a little bit more and sharing that framework with us.

Sure, yeah. So many individuals struggle with access to communication. The many individuals I work with, like I said, have cerebral palsy, or and maybe they have a vision impairment, and how in the heck are we going to get access going for someone who, let's say, doesn't use their hands? So, there's a fair amount of AAC users who are what we call direct select users, they're accessing with their hand, they're touching the buttons or touching the book, or whatever, whatever it is that they're using. There's a significantly sized group of individuals for whom that's not an option. So what, what we don't want, what we don't want is for those individuals, challenges with access to communication to hold back their language development. So, when we think about AAC, I'm just going to hold one of my books up here, because I have it. We think about a language, this is a language, this is German, this is Italian, Spanish. This is this language is called Pod.

So Pod is a language, and when I am teaching someone this language, I am speaking this language to them. So I'm saying, oh, you do it, oh, you do it, do more, hurry up. Oh, look at that. So I'm interacting with them in this kind of aided language stimulation way, where I'm modeling my language while I'm talking, and for someone who needs AAC, this is the piece that should start young. This is the piece, this, this. We are talking with symbols, we're using words, but we're pointing with symbols. This should start when the child is very, very young. But let's say you have an individual who's maybe an eye gaze user, and eye gaze.. holy cow. Okay, first of all, anyone who is considering eye gaze for your child, sit in front of that device for an hour, and it will create so much compassion for the eye gaze users in our world. It is so fatiguing, it is so challenging, especially if you're already living in a body that doesn't have a lot of stability, maybe a body that's moving on its own, you're already existing with a body that that just doesn't stay where you want it to stay, and then now you're going to look at a screen and try to focus and get your eyes to focus and dwell long enough to activate the the number of resources one must recruit to do that are significant, and and it's a huge ask. It is not an impossible ask.

It is a huge ask, not to mention I didn't even talk about all the environmental everything people are having conversations around you, and you're trying to figure out how to get your body stable, so you can, like, it's so much, so what we don't want is for a very young child to have to learn access and language at the same time, and the way that I present this. Is let's think about I have a, I have a five year old. So, my five year old daughter has spent countless hours picking up a crayon, picking up a pencil, turning it the right way, scribbling, drawing shapes, drawing lines, doodling. I don't ask her, or I didn't when she was two. I didn't put that pencil in her hand and say write a letter to your grandma saying thank you for the birthday present. I didn't do that because it wouldn't be appropriate for me to do that. We need to think about access the same way.

So too often I see people. Okay, now the two year old who's using eye gaze has an eye gaze device. They're looking at some kind of layout. Okay, now tell Grandma, thank you for the present. That's a lot. It's a lot. So, what we need to do is we need to think about access separately from language. So, when we're thinking about access, I'm thinking about providing lots and lots and lots of opportunities for that child to access communication in a fun, recreational, no-pressure way.

So this is why there's a whole bunch of fun eye gaze games available on dedicated devices, we can program in songs and YouTube and books and drawing activities and pianos and and that that child can sit in front of that eye gaze device and learn how to access with their eyes without this co-occurring demand of now you need to look at these symbols and figure out how to say thank you to Grandma for the birthday present, which number one wouldn't be appropriate anyway, because now I'm telling them what to say, and they should be telling me whatever they want to say, so that gets into a whole nother area of AAC, of really it's it's the user's words, or the users words, it's not about answering my question right, because if you're answering my question, it's what do I want to know. It's not what you want to know.

So, really looking at those two things separately, of access kind of lives in one place, and then the language lives in another, and then they do meet, but if we push, if we push them both early, then we're gonna run into some, some problems, and we're probably gonna get a frustrated user, and we're probably gonna get some device abandonment, which is an unfortunate side effect of that.

Yeah, that really resonates in there, been there for sure. We had a question come in from Karen for a team that used a PRC device when they were younger, but then dropped it because the child was talking, but it's still not easily understood as a teen. If you return to AAC, should you use the same system?

That's a very individualized question with a very individualized answer. So I think, without knowing more about about the user, I would say maybe I think that it depends on a lot of different factors. So we're looking at a young child versus now an older child. Has literacy changed? What does language look like? What does access look like again? If we go back to a device that was no longer used, then I'm always, I'm always looking at why was that device no longer used? Was it, was it abandoned simply because that child started using more verbal speech and they didn't need it anymore, or was it abandoned because access was too difficult for some reason, was it abandoned because the the symbols on a PRC device tend to be very small. Some kids with visual impairment struggle with them for that reason. So maybe it was a visual access issue, or maybe it was just a like I said, they just started talking more. So I would, I think I would need more information to be able to give an intelligent answer to that question. The short answer being maybe, a long answer being,

Yeah, helpful like framework, though. Just the way you kind of walk through that to think through as a parent and kind of do those quick assessments, but then find a partner to really kind of personalize and tune the answer to that, that, that teenagers' specific needs and strengths.

We also wanted to, we had a lot of questions about school, obviously a big topic, which can be, you know, very difficult. Two problems that we hear over and over. Number one, assessments are not appropriate, and recommended devices are centered around maybe a district's preference versus what a child needs. And number two, school staff might not be properly trained on a child's program or use it with fidelity. So, what can parents do to ensure a strong AAC program at school, and then, and then we have a couple specific questions about that as well.

So, I mean, I think we go back to our earlier discussion about the knowledge base of most SLPs in terms of AAC. So, most school districts do have an AAC team, but that AAC team could be headed up by someone who's maybe a newer grad or by someone who's only ever worked with a particular type of system or device, so as a parent I think it's really important to remember that you always have a right to disagree with the assessment and you have a right to. To an IEE, so if it's a scenario where you feel, as the parent, that the recommendation is not appropriate for whatever reason, then requesting an IEE with an outside assessor, someone who is is comfortable, knowledgeable, maybe specializes in NAAC, where this is all they do all day long, you might get a more accurate recommendation.

Definitely important to figure out. We kind of talked about this last time, but sometimes I know in our district we used to have somebody who was AAC slash AT specialist, and it's not the same thing. So to really ask those questions and determine if it is appropriate, and some specific questions that people were asking, one mom, she asked how they could specifically follow up on what's being done at school for home with their child's AAC program. She asked if there's an app for certain devices, or can they bring home the same AAC device that they use at school.

So that's always a kind of a district by district issue in terms of devices, so the districts often don't like the use, let's say you as a parent receive a device for your child and that child is funded through insurance or you purchase that device, and districts generally don't like for that parentally provided device to go to school often because of liability reasons, so then we go through this assessment process, and hopefully the outcome of that assessment process is that the district says yes, the device you're using is appropriate, and we will purchase another one, essentially the same device to be used at school. So, but now we have this issue of two devices, so we have a home device and a school device, and, and if that vocabulary is different on the home device for the school versus the school device, holy cannoli, we have just made that scenario so much more difficult for someone for whom communication is already difficult, so we need to work really hard. If there are two devices being used, that those profiles are being transferred back and forth.

Almost every AAC system, software system, books are harder, but not impossible. Has, or at least every high-tech system, has a way to pretty easily transfer profiles. So, let's say the school does some programming, they email the parents. Okay, so we did some programming, and here's the latest updated profile. So, making sure that we are that child is speaking the same language home and school is super important. And then the second part of your question, oh, she asked if there was an app for certain devices.

There are many AAC apps available, many, many, many. I will tell you that universally the AAC apps that are available are for children who use their hands, so they are for children who are selecting their pushing buttons on the screen with a finger, which is many, but not all AAC users. So, if you are the parent of an AAC user who will not be using their hands to make selections, then it's, it's very likely that an iPad-based app is not going to be appropriate for your child.

Can a parent request to be trained on the device that they get from school?

A parent should be offered training in If that parent is not offered training, then absolutely. So, what I've had some parents have some sex with is if there is a new device being utilized at school, that parent requests to sit in on the training with the other school-based individuals who will be supporting the child in their use of that device, so let's say we have a new device coming down the pipe that that team, whoever the school team is, should be setting up a training with paraprofessionals, teachers, whoever is in that child's life that will be interacting with them, and the parent then says, "Hey, but I'm a, I'm a partner, I'd like to come, and, and most of the time that goes over, okay, certain schools will have certain regulations and rules and policies and stuff surrounding that, but for a parent to make that request is absolutely that what that that request is absolutely necessary for their child's education, and should be written into the IEP in some way, that continued parental support or ongoing parental support consultation and collaboration regarding the AAC. System will be utilized throughout the school year.

One quick note on this: we did, we had to advocate for that in our IEP, and we're successful after a little bit of back and forth, but we were also able to go to the regional center and ask for parent training there under different guise, right, which is more about safety and security and things like that, but we were able to get training through our regional center, so you know, to some of our previous conversations, like the more you can equip yourself to be an effective partner for your child, the better, and I know it can be challenging to get sometimes, like both you said, it should be offered, but sometimes you got to advocate for it, and there's a couple pathways, potential pathways to get that support.

You parents are your child's 100 times over. You are your child's best teacher, and school is important because they're there for six or seven hours a day, and that's a sizable chunk of time. But the reality is nothing is more important or valuable than getting parents the information they need to support their child in a way that supports their communication and their learning, and I know we're running low on time. We wanted to try to, like, get in two quick questions. One more school question that came from several different parents, so I'm going to try to make it into one, but there were a lot of questions about how are goals created in your IEP for AAC. Would this only fall under speech and language goals? Can it be utilized in different areas? One mom said that they had been recommended to write an AAC goal for writing. So, can you let parents know how AAC goals can be used holistically in their IEPs, so AAC goals.

This is a longer than a two minute answer. The most important thing to remember when writing any goals that say the child will use the AAC system. Is that that we remember that the purpose of that system, that system exists not for the child to answer people's questions. It does not exist so that the school can test that child on what they know. That system is that child's voice, and that child can use that system however they so choose. So I have a lot of issue with a lot of goals written for AAC use at school for that reason, because it says child will use system to answer who, what, and where questions, that is not the purpose of this system. So, really, the way that we should be writing goals, the language should be something along the lines of when provided consistent modeling during natural opportunities throughout the school day by various adults and peers in the child's environment, the child will use their system for a variety of functions, including but not limited to requesting, refuting, negating, commenting, sharing information, etc. Like that is like the AAC goal that that I like to see in IEPs, because what that means is, guess what, it's not the responsibility of the child, it's the responsibility of the people in the child's environment. So it becomes a goal. Yes, it's for the child, they're going to use their their system in a variety of functions, but the caveat is that everyone in the environment is going to be using that system right for a variety of functions as well.

I love that. I think that's that's a beautiful place to end it. I think the, you know, this reminder of kind of the self-determination and voice choice, like those are powerful concepts that I think you know every environment needs to take, take into account, whether it's the school or other other community-based situations, and then for us as parents, right, and remembering that, and so I just want to thank you, Allie, for all that you do in this world, for kids and for families, and you know, you have this, this ability to break things down in a clear and actionable way, but then also showing us, I think, a path forward for, for many of our families who are on the AAC journey.

Yeah, I just have to say, I mean, you know, obviously we desperately need to change, as you touched on, Ali, the culture and the stereotypes around non-speaking individuals, and the best way we can do that is to ensure that they're heard. So, thank you for leading this conversation in all the many ways that that we can do that, and not only fight for the individual things our child needs, but change the bigger picture of, really, you know what, how people need to value and respect. True individuality, so thank you so much. It's always amazing to speak to you.

It's my pleasure. Thanks so much for having me.