This webinar was presented by Dana Nieder, author of the award-winning special needs blog, Uncommon Sense. The first video is a presentation focusing on skills parents need to identify AAC technology that addresses their child's needs. Dana Nieder also talks about ways to advocate for AAC, select vocabulary, learn to use an AAC device, and learn how to interact with a child using AAC. In the second video Dana leads a Q & A session and answers questions for participants. She provides practical answers and advice for parents and caregivers on starting to use AAC technology.
- [Voiceover] So a little basic review. AAC stands for Augmentative and Alternative Communication. If you're looking for AAC, you see various forms over here in the pictures, your big want is something that's comprehensive and robust. You want a system that has a lot of words and a lot of language, and you need to begin with the end in mind, which means that rather than using a small system with only a few words to kind of get started, you want to find a system that has a huge amount of vocabulary programmed in that can then be simplified or scaffolded down for a new user. You want to make sure that your user has access to all of the words, all of the time, rather than using activity boards, which are sometimes called activity-based communication displays, or ABCD.
The blog Practical AAC just had a great post on this, moving from these activity-based displays to something more robust. If you're saying, "Wait, I love using an art board "for art time with words like 'cut' and 'color' and 'glue,' "and I think it's a great idea to have a little board "for snack time with snack words," then the best thing to do is first go back and check out that initial webinar, which talks more about why it's so important to have all of the words, all the time. I'm kind of going to skip over that part right now.
You want this system in place right now, as soon as possible. If you were waiting for something, if you were told you had to wait because there was some sort of prerequisite, these are fallacies; they're just not true. There's no such thing as being too young, too old, too low functioning, too behavioral, too motorically impaired, you don't need to start small and work your way up. Using AAC is simply not giving up on speech. You need to presume competence and believe that your child, who might not be able to speak, still has the same language potential as a speaking child does.
That little Google phrase at the bottom, "Don't Wait to Communicate webinar," that will take you to the first webinar, which has been uploaded on YouTube. My child would have been labelled, if I had let the system choose her AAC path, as too young, too low functioning, and too motorically impaired for a large AAC system, until she was too behavioral, which is the category that she would often fall in now. That's why it's so important to sometimes take it into your own hands, because it's one thing for you to embrace this philosophy of not needing prerequisites, but sometimes you need to ensure that the professionals in your child's life have the same mind-set that you do. That's why we're going to talk about gathering the team together.
This picture kind of outlines the steps I generally take when we have a new team member coming on board, whether that's a new teacher or a new speech language pathologist. I try to use a lot of enthusiasm, which is sometimes a little difficult to drum up. But it's worth it, kind of pulling people in. "Look how amazing AAC is! "You're going to be an amazing part of this team! "This is all going to be so fantastic for all of us!" This strategy works best if you already have a system in place and if you've seen some success at home, because it's a lot easier to get people to buy in if they can see that it's already working. If you meet resistance, if somebody is digging in their heels, if a professional is saying, "I understand that "this is what you want but this is too much for your child," then you kind of have to move from enthusiastically inviting someone to get on board to pulling them on board.
We're going to talk now about how to respond to professionals who are focusing on prerequisites or on starting with limited systems. I call this responding to a pro's "no"s. We had a little bit of a debate about how to spell "no," but that's what we went out with for the plural. You need to start by claiming your spot at the table. I recommend you go more with the approach in the cartoon on the right and less with the pitchfork guy, but whatever works. You have a right to have a voice in this process. You're the person who's going to spend the most time with your child this year and in all of the years moving forward.
ASHA's position paper on the roles and responsibilities of speech-language pathologists with respect to AAC, which you can Google as "ASHA AAC position statement 2005," if you're interested in seeing that, says that one of the primary roles of an SLP with regard to AAC intervention, is to integrate perspectives, knowledge, and skills of team members, especially those individuals who have AAC needs, their families, and significant others. So it's right there in the ASHA document that it's essential for your position to be considered. Kind of the default approach, if you're getting flustered, if you're getting nervous in a meeting, which I know happens to me, your default is to just keep going back to the bottom line. Which approach -- the small one or the robust language system -- has the potential to cause more damage, and which approach has the potential to yield more success?
The first step here is to presume good intentions of the professionals. People generally don't become SLPs if they want to silence small children or large children or adults. If you're hearing these types of comments, that your child is too young or too old or too behavioral, you just have found yourself in the unfortunate, but not uncommon, position of knowing a bit more about AAC best practices than the professional you happen to be working with. You're going to have three options. You can either try to educate your team, you can try to find someone else to work with, or you can go it alone.
The first step, I think, would definitely be to try to educate gently and see if you can pull everyone together. In each of these charts, it's a lot of information. The italicized part at the bottom is going back to that bottom line. So if you hear they're too young, obviously, we start speaking to babies at birth. It's never too young to have accessible language modeled. The bottom line is if we start too late, we're losing communication time. But if we start too early, nothing really gets lost. There's no damage then. If they say you're too old, you can say, "How old were you when you stopped learning?" But that's a little aggressive, so I wouldn't recommend it as the first response. But it is the main idea. I'm going to go ahead and assume that everyone here is hoping to learn something or to think about something tonight.
People are lifelong learners; humans are lifelong learners. There is no such thing as too old to learn. For too behavioral, if communication isn't in place, obviously, you have to communicate with behavior. So behaviors, which I put in quotes because behaviors are good or bad behaviors, are proof that somebody needs a better communication system, not a reason not to provide one. With a communication system, behaviors may decrease. But without one, they almost certainly won't. Sorry. Hold on one second. Is everyone hearing me right now? Sorry, I paused. Okay, good. Good, then I'm going to keep going.
If you hear that somebody is too cognitively impaired, then we can respond that non-speakers are notoriously underestimated by formal tests. There really aren't any formal tests that I have seen used with Maya that measure any semblance of what her potential is. It's hard to know what her potential is because there aren't tests that are designed in a way that really measures them. So you can say, "How will we ever know "if a child is smart enough to use big words "if we never give him big words to start using?" There's a blog post on that, by the way, Assessment of Non-verbal Children.
So here's another Google buzz, if you want it. "False Negatives: Evaluation of "Functionally Non-verbal Children." That will pull up a blog post that relates to the topic of evaluations and non-speakers. Finally, too motorically impaired, it is challenging. A lot of our kids who need AAC are not simply impaired in the area of verbal language. They have challenges with other parts of their bodies, with motor movements. But there are solutions to these challenges, such as the ones I listed here: keyguards, targeting squares, or occluders, gloves with a fingertip cut out so that only that fingertip is going to activate a touchscreen, switches, eye-gaze devices. Our inability to solve an access issue indicates that we need more help, not that somebody isn't a candidate for communication. Oh, thank you to people who are throwing links up. That's helpful.
Finally, starting small and working your way up, it kind of makes sense. I understand why people fall into this trap. If you want to start using AAC with somebody, I can see why people want to put out a few word cards first and then move up. But it's not a great system. When we speak to babies, we use all of the words. You can't learn to use all of the words and form syntax and sentences and full thoughts if you don't have a lot of words to use. If you start with a small system, every time you graduate to the next system, your words are going to move, your organization will change. It's going to make someone have to constantly prove that they're ready for the next step.
This is kind of a common-sense approach to responding to professionals' negative statements. But the problem here is that you're kind of playing a game of Whack-a-Mole. Every time somebody says something, you're trying to respond, which is exhausting and brings me to the next approach. The next way to respond to professionals' "no"s is to respond academically. SLPs in the United States have to operate in a way that's in accordance with the research base out there. They have to used evidence-based practice. If you have evidence against the way that they're proceeding with treatment, it's kind of a big a deal.
Here are some points that are well established in the current base of speech and language research. AAC is an intervention approach that can stimulate speech and language. It is not a last resort. Negative behaviors decrease as functional communication increases. Spoken language input during therapy should include correct grammar and morphology. What I mean by that is if a child in speech therapy said, "I talk to her yesterday," the speech therapist would respond, "Oh, you talked to her yesterday," or, "You spoke to her yesterday." You can recast to include the correct grammar.
If you have a system that doesn't have grammar, that doesn't have verb tenses or plural markers or possessives, then you can't use that language input that is correct. The research base also says AAC should be introduced before the child reaches the frustration level. There are some great handouts at that link there. Or if you Google "AAC myths revealed Dynavox," Dynavox has made a series of handouts that refutes each one of the points I was just talking about, with research links at the end. They would be very handy to bring to a meeting if you're advocating for a large system. You can also turn the tables by asking them questions.
So instead of them saying negative things and you respond, just take the driver's seat and say, "Show me how this is going to help her "form grammatically correct sentences. "Show me how this is going to help her "make a joke or ask a question, "instead of just labeling nouns." When all else fails, you've got to look for another path. Ask what happens if you reject the recommendation. Look into a private AAC evaluation, which is often done at local hospitals or rehab centers. Each state is supposed to have an AAC Lending Library. That might be worth looking into, or devices that could provide grants.
The last resort, can you do this on your own first and then push it into the school? There's an ever-increasing number of families who are doing it alone and pushing into schools for a few reasons. Number 1, there's a lack of AAC experts around. So even if you want one, they can be hard to find. Another is that there are some gatekeepers out there who may take these negative approaches. Third is that even if you find people who are willing to work with you, sometimes it takes a lot of time to get a system approved and in place. Once you've decided that you want AAC, you want it right now, because you want to hear your kid.
So going it alone doesn't have to be going it alone forever. It can be going it alone temporarily, until you can get some success at home to push into the school or until you can find somebody who can help to guide you. If you have to go it alone, let's talk about initial vocabulary. Vocabulary, like, "Yay! First Words! It's so exciting!" Except that's how I feel when I thought about talking to you guys about first words, because it's tricky.
On one side, you want your child to have all of the words. All of the words, they want to say everything. On the other hand, you need to start with a set small enough so that your child will feel successful and will be able to start looking at things and finding patterns and maybe even jumping in sooner, rather than later. I cannot stress enough here that I'm providing just some general thinking points. These are not rules to follow when you pick vocabulary. Every child is going to be different. Everyone is going to need different things from that first vocabulary set. But hopefully I'll say a few things now that will make you think, "Oh, I know how this would work for us."
When you think about first words for an AAC system, I would think of a mix of core words and highly motivating fringe words. If you haven't heard of core words, those are the words that make up about 80% of everyone's speech. Words like I, you, eat, play, up, down, in, out. They're just the core words. A lot of our language is made up of them. The child will also have personal core words, such as the name of family members, medical words. If you have a child who has seizures and you talk about seizures a lot, that could be one of your child's personal core words or words that are centered around your life.
Then highly motivating fringe words, kids like weird things. You're going to know what works for your child, mostly. Maya loved alligators and monsters. All children love to talk about bathroom humor. I had no idea she liked the weather, but she really did. So you kind of just have to see what you think. The first words should be frequently usable and either highly functional or highly motivating. The goal of choosing these words is that you want an initial vocabulary set that can be modeled frequently throughout the day and that will also be strongly enticing for the user.
This is a sample set of first words. Again, just one sample. I'll give you a second to look at it. You can see that down the left are the core words. We have some pronouns, some verbs, a few little modifying words. On the right, it's more personalized: family names, friend names, a small set of each. You don't need to list every cousin you have to start with, the first set. Some favorite stuff, and I put, "Other." For Maya, other was animals. She really wanted an animal. Now, you're going to use these words to combine and to use them in various ways throughout the day in lots of exciting ways.
Then when you start thinking about next words, or other words, it gets a little overwhelming. There's so many words. I tried to put a few categories in that I thought we opened near the beginning, different words from each category. These are important things to talk about: feelings. Pronouns, which are pretty versatile, especially "it." You can do a lot of things with "it." Food and drinks, colors, adjectives, position words. Verbs, don't neglect the verbs; question words. It's good to think categorically, because a lot of AAC systems, or early AAC selection, if you're using something where you only get a few words, are kind of noun heavy, but you want to make sure that you're really mixing it up to provide a balanced language, even when you only have a few words in there.
Resist the urge to use phrases, although I put a little star because there is a place for phrases. For things like, "I want," "I see," if you make those phrases, then you would have to have, "You want," "You see," "He wants," "He sees," "She wants," "She sees." Modeling with your child, which we're going to talk about in a few minutes, is going to guide you toward what words might be good to add. This is kind of an important part. Pretty quickly, I would get a button programmed in that will indicate that the word your child is thinking isn't there. So a button that says, "I need a new word," or, "I don't have this word," or something else.
This is essential for your child to take a little bit of ownership so that if they have a thought, even if they don't have the word, they know that they can use their system to at least give you a clue that they're trying to say something and they don't have what they need to do it. When you add the vocabulary, I would model the whole process so that they can start to see what it looks like to add in words. Here's a resource. If you're somebody who likes data and lists, this is the core word list for preschoolers. It's on the Minspeak website. If you need to Google it, you can Google, "Marvin core word list," and that will take you to it. So you have a system, you have some words. Now you need to learn how to use it. The best way to learn how to use the language is by actually using the language.
When your child is asleep or the talker is free, it is time to kind of play with it. Some ideas to familiarize yourself with the words are to read a children's book, talk to your spouse or a friend using only the talker, look at an object somewhere in your living room and just start to talk about it. What can you say about it? Can you say what you could do with it? Like, "I would sit on that chair." What can be said? Can you describe it? Can you talk about the texture or the color? Then you want to think about the things that your child loves most of all and figure out how you could use the words that you have to talk about those things.
For example, if your child really loves tickling, you could say, "More tickling," "Stop tickling," "I tickle you," "Want tickle," "Want stop tickle," "Want more tickle," there's so many possibilities. The more/stop combination, so you tickle the child, and then you stop and say, "Stop," then you wait, then you push the button that says, "More," and tickle them some more, then you wait. Then you say, "More," and you tickle them some more. That more/stop combination, or go/stop if your child likes swinging or trains, is a powerful combination. And more and stop are such versatile words that even if you just picked that pair to get started with, you could use it when you're eating for more/stop.
You could play part of their favorite video on YouTube and model more/stop. That's an easy combination to get started with, which brings us to modeling. You're going to want to start using the system in front of your child, which is called modelling, or aided language input. This is the way that children typically learn language. Typically, you talk to babies. They listen for months or years without any expectation that they're suddenly going to talk back to you. And eventually, they speak back. When you're doing modeling or aided language input or aided language simulation, you're kind of applying the same approach to AAC use. You're going to model on the AAC system without any expectation that they're going to use it.
Eventually, they will be ready to use it too. AAC is hopefully going to provide your child with an easier way to access language motorically, but "easier" doesn't mean "easy." You should expect this to take a little bit of time, which we'll get back to in a minute. First, let's think about why we model. I'm going to use this image. I'll put up the link in a minute. This is from Mary-Louise Bertram's recent post on modeling, which was on Jane Farrall's blog. It was a fantastic post. This is a Greek pod page set. Imagine you're a new AAC user and someone gives you this communication board. Why would you need an adult to model on it? I would certainly need an adult to model on it.
If you're not literate, and most of our children who are new AAC users are not fully literate, you can't read the labels, which is why this Greek page set is such a great example for us to look at. When we hold an AAC device in our hands that's labeled in English, we can see immediately what all the titles mean. But our children can't do that. So they need to see and hear the language being used so that they can connect what those buttons and words mean. That link is here at the bottom. I didn't put the Google terms because it's right there, "Why We Do Aided Language Stimulation and You Should Too."
If you Google that, it'll come right up. It's a fantastic post. Think about how many hours of verbal input speaking children get before they speak back. Now think about AAC input our users get before we expect them to speak back. To quantify this, Jane Korsten put this up in 2011 on the QIAT listserv. I'll let those numbers sink in for a second. By the time a child starts speaking at 18 months, they have received 4,380 hours of language input, hearing speech. If somebody is using an AAC system only during speech sessions for 20 or 30 minutes, twice a week, it will take them 84 years to get that same amount of language input.
When I heard that quote the first time, it took my breath away. The bottom line is that this-- it's just right there. I mean, it couldn't be more clear why it's so important that we model and that we model frequently, every day, for our children, because they need that language input if they're going to become as proficient with their AAC system as speaking children are with speech. Here's some information about what modeling is and what modeling isn't. Modeling is simply providing accessible language input. It's providing language input in a way that our children will be able to hopefully access.
You're going to model what could be said in different contexts, like, "What is that?" or, "I want milk." You can model how to express a thought with AAC, like, "It's cold in here." "That's loud." "I like that car." You're going to demonstrate word finding and how to use the system mechanically, how to hunt around for something, how to navigate. You're going to demonstrate conversational repair, like, "You don't understand," or, "That's not right." Or when you're in the early phases and you don't have that many words, just, "No." "Oh, did you want waffle?" "No." You need to model that kind of repair and rejection. Modeling is not, "It's blue. Now you say blue." Or, "It's blue. What color is it?" We aren't quizzing, we're talking. We're just showing how to use this system to talk.
Last weekend, I took the kids to the New York City Marathon, and this is an actual picture I took. These poor runners, we see them at one of the hardest spots in the race. There was this amazing marathon volunteer there with a megaphone, just chanting, "Your race, your pace! Your race, your pace!" And these people needed to hear it, because this was a hard stretch. I just couldn't stop thinking about how that applied to modeling, because modeling is a marathon too. When we start using AAC at home, this is a long road. There are going to be easy spots, and then there are going to be some crazy hills. It's not always going to be simple. You can take whatever approach you want. I'm going to talk about two different approaches. Here's the laid-back approach to modeling.
You can tell yourself, "This isn't rocket science," because it's not. You're just pushing buttons when you're talking. You can use modeling instead of speech. Just use the buttons. Or you can speak and use the buttons at the same time. You could model whatever comes up throughout your day. How many words to model, this is a great rule from a blog post on the Speak for Yourself page by Heidi Lostracco. If you Google, "Simon Says Model One More Word," it will come up. But she suggests that you model one more word than the child is producing. So in the beginning, if your child isn't using the system at all, you would model one word at a time. But it's also discretionary. If you feel like your child is ready for some longer sentences, throw them in. It's not going to hurt.
This is the laid-back modeling approach. There are no rules. You could model whichever words come up in conversation. If you want an easy way to get started, you kind of pick one context, like, "Today I'm going to model at breakfast," or, "I'm going to model when we do art after school." Then there's the more structured modeling approach, because some people like rules and guidelines. So you could designate specific times of the day that you're going to model for the day, or for the week even, if you want to map it out. You could follow a core word of the month plan. PrAACtical AAC does great core word plans.
If you Google "November AAC core words," I bet you would come up with what they have for this month. You could use brainstorming charts to pre-plan your language targets. I have a good one on the next slide, which is also from a post by Heidi Lostracco, called, "AAC Implementation: Where Do I Start?" If focusing on a predetermined word list feels limiting, you could focus on a concept. So, "This week, we're going to ask a lot "of 'where' questions every day." "This week, we're going to make observations." But if you like structure, you can pick targets and approach this in a structured way. Here's that chart I was talking about.
This is a great resource, and there's a blank one on that blog post that you can print off and use. You kind of start up at the top with what the person loves to do. On this example, it was cars. Then it walks you through ways to figure out different words to model around that topic. Okay, so I'm going to show a few videos now. This is the first video. I went back and pulled videos of both my kids as users when they were young, since this is a beginning implementation webinar. I'm going to take a minute to move some stuff around here. I think-- Oh, thanks, guys. Let me know if the audio is not right. It should be. Sorry, I'm ... It's funny that I'm here doing technical stuff, because technical stuff is not my strong point. Let me mute myself, and I'm going to put this video on. This is a video that is about modeling and also about the next topic we're going...
- [Mother] Are you looking at a lot of words?
- [Computer] Ball.
- [Mother] Ball? Who likes to...
- [Computer] Play.
- [Mother] Play with a ball?
- [Computer] Play.
- [Mother] You like to play? You do? I like to play--
- [Computer] Play.
- [Mother] Too, and I can play with a...
- [Computer] Ball.
- [Mother] Ball, just like...
- [Computer] You.
- [Mother] You! Bye-bye.
- [Computer] Lakeshore.
- [Mother] What about Lakeshore?
- [Computer] Lakeshore.
- [Mother] What about Lakeshore? Do you want to...
- [Computer] Go.
- [Mother] Go...
- [Computer] Lakeshore.
- [Mother] To Lakeshore? What do you think?
- [Computer] Santa.
- [Mother] Santa! I remember what Santa says. Do you remember what Santa says? What does he say? Ho-ho-ho. Can you say, "Ho-ho-ho"?
- [Voiceover] Okay, am I back? Is my sound back? Okay, good. So I think Will was about 22 months in that video. He has grown up around an AAC-using sister, so he definitely has a lot more exposure than most newer users would at that age. But you could see that I was taking, definitely, the laid-back approach to modeling. I was following his lead. I didn't have anything in mind. I had no idea what he was going to talk about. I let him go where he wanted to go, and then I just gave a few more examples of things that he could say if he wanted to.
I also tried to wait, to let him answer, not to be too assertive with my modeling, to just kind of supplement what he was already doing. If you don't have a Lakeshore by you, it's a teacher store where you can spend a lot of money on a lot of different things. I don't know why he mentioned Lakeshore, but it's something that was in there, which I should also mention, he's using his sister's vocabulary set, which was kind of modified down a little bit to him. Lakeshore is kind of a strange fringe word that I wouldn't put in for most toddlers who are using AAC systems as a new user, but his vocabulary set was a little bit skewed because of Maya's.
Let's talk about the next thing, which is babbling. I found these pictures of lots of different kids' toys. When you give these toys to kids, how do they figure out how they work? Oh, there we go, everyone's talking. Hi, everyone! Yeah, by pushing the buttons repeatedly, until their parents are tempted to take the batteries out and hide them at night because all you hear are the same buttons over and over and over again. If you give a kid a thing with buttons, they push the buttons. That's what they do. How silly would it be to give a child one of these things and say, "Press the green button! Go ahead. "Press the button that says, 'Green.'" That's not going to work. That's not the way that you learn about something. If you get something with buttons, you push all the buttons.
Somehow, this doesn't always translate with our AAC users. So people who are using AAC in a classroom, a new user, they're going to want to push all their buttons. They're going to want to keep playing with them. "Oh, wait, what does that one say "that has the triangle on it? "Let me push it. Let me push it again. "Let me push it three more times "and see if I can make a big string of words with it." And the teachers or aides in the classroom might think, "He's just playing with it. "He's not using it for communication. "He's not using it in a purposeful way. "This isn't what they're supposed "to do with the communication device." But this is an essential part of using a communication device.
The same way babies babble, children need to have space to babble with their AAC devices, for all of these reasons. To explore the system, to experiment with sounds, to practice, to memorize where things are located, and sound patterns, and to annoy people, because yes, both of my children have made giant strings of, "No, no, no, no, no, no, no, no, no, no, no, no, no," and then just laughed and laughed while I kept saying, "How do I clear this out? How do I clear this out?" But it's part of what kids do. Here's a little video about babble time. And let me pull this up. This is Maya when she was much smaller. Let's see what this video is, okay.
- [Mother] Maya, did you open up all your words?
- [Mother] Yeah? Maybe it's too many. Mommy should help you out. No? Oh, you want more words? You said, "No, no, more"? Do you remember how to do it? It's this button up here, the blue one. Look at where mommy's finger.
- [Computer] Yes.
- [Mother] All the way up. Yeah, you've got it, let me help you out.
- [Voiceover] Okay, so Maya's device, I should have mentioned this beforehand, but the app that Maya uses actually has a button at the top that lets her open up all of the words in the system, even the words that I hadn't put into her small page set. That app's called Speak for Yourself. That sort of making and unmasking, I think the babbling is most easily done with this app. But there are other systems that have the ability to mask and unmask words. But it was clear in this video, and still now today, she wants to have all of the words open all of the time. She does not like it when words are blacked out or taken away. She really runs her own system now.
This video was back when she was probably 3 1/2, maybe 3 3/4; she's 7 now. She's kind of in charge of her own device. But she wants all of the words open. Sometimes that's overwhelming for me. I tend to turn that button off so that I'm working with a smaller set of words, which makes it easier for me to find things. But kids don't want to have their words limited. They need to time to go in there, to find things, to play around with them, and to explore their words. The third strategy I'm going to talk about, so we did modeling, we did babbling. Let me just go back to babbling for one second.
Regardless of what app or system or anything your child is using, just give them time to have free reign to explore, whether that's in bed at night, or when you're in the car, or you set 30 minutes and say, "Just go to town. "Just do whatever you want." The more, the better, because they'll end up finding and teaching themselves a lot of things that you might not even be ready for. They'll kind of take the reins and surprise you. The third strategy is waiting and acting clueless. Acting clueless sounds really easy. Actually, it's tricky for parents of children who aren't speakers.
Communication with AAC is a slow process, even when motivation is high. It takes time to find the words you want to say, to remember where they are. You have to hold that thought in your head. Like I want to say, "Banana." If I want to say, "Banana," I need to reach forward. I need to think about where "Banana" is on this device. I need to activate the screen, get to that spot, say, "Banana." Now, if you're making a sentence, that has to happen with every word. It takes time, so you need to become an expert waiter. Also, that's when motivation is high. For a lot of these kids, motivation might not be super high because they're used to the adults in their life answering for them. Most kids who aren't speakers, they know that if somebody says to them, "Hi! Hi, Maya! How are you?" If she just waits silently, with a blank look on her face, she knows that somebody's going to step in and be like, "Oh, she's good. She had a good day." Because they're used to other people answering for them.
You have to walk this tightrope again-- here's another confused-looking tightrope guy-- between acting clueless, to kind of draw that communication out, but also not acting so clueless that you're frustrating your child too much. If a child goes near the sink and points at it and you wait and act clueless, you're waiting for them to say, "Water," or to make a sound or to use a talker, that makes sense. Now, if you're waiting too long and they're getting frustrated, that would be a great time to step in and model, like, "Oh, I think you want water. "Look, we can say it this way, 'Water.'" And then you just move on. You don't make them say it. It's not a test. You're just showing them how they could build communication into that place.
The bottom line is when you're not there to translate, people really will be clueless. Our kids need to learn how to step up and be a little more assertive as a conversational partner. Also, sometimes you think you know what they want, but you really don't, which has happened to me many times. Here's a video. Here's a video where we get to watch me make a mistake. I should not have done what I did, but I was new, and it's okay to make mistakes, because we're taking a laid-back approach. None of us are ...
- [Mother] Maya, you're eating your vitamin and playing--
- [Voiceover] Okay, does anybody know what mistake I made? That's Maya, my daughter. In that picture, she's using an iPad with an iAdapter case and a plastic keyguard to help with fine-motor skills. And that's the Speak for Yourself app. Did you see the mistake? Did you hear the mistake? We had one at the end. I see two people typing. I don't know if they're talking to me or if they're going to say something else. I'm waiting to see. Oh, thank you! Or we can just pretend I didn't make a mistake. Okay, so right at the end, she said-- Yes, Faith and Kelly got it.
Right at the end, she said, "School bus." She was always saying, "School bus." When I look back at videos now, I see so many different reasons that she might have said, "School bus." But in the video, she said, "School bus," and I said, "I know, you love the school bus." I don't know that she loves the school bus. I don't know what she wanted to say. Did she want to say something about the bus that was next to her? Did she want to say something about her bus for preschool, which was going to be coming soon?
Maybe she was talking about the school bus comes on Tuesday or something special happening on the bus today. I have no idea, but instead of playing dumb and kind of moving it out or seeing what she might want to say, I tried to guess what she was thinking and filled in communication for her. So now I'm going to play a different video. This was when Will was little, so a few years later, probably four years later. I was-- oh, wait a minute, is that the wrong one? Hold on a second, it's not cookie. I'm looking for video number 4, which is here somewhere. I'm getting to it. There we go. This video, the wait time, you're--
- [Mother] Say what you just said again. What did you say? Don't want?
- [Mother] Can you say it again?
- [Mother] Show me what you did with your hand. What does that mean? Say it.
- [Mother] What?
- No, don't want.
- [Mother] Don't want?
- No, I want the iPad, Mommy.
- [Mother] Oh, the iPad, you'll tell me with the iPad. Here, what is it? Here, I'll hold your puppets for a minute, go ahead.
- [Computer] Field trip.
- [Mother] Field trip?
- [Mother] No.
- [Mother] The bus?
- [Will] Yeah.
- [Mother] Oh, is there a bus? Let me see that, Will. There is. I can't get it to zoom out properly, but there is a school bus in that picture. You're saying something about the bus?
- [Will] Yeah.
- [Mother] What about the bus? There's a bus over here, school bus.
- [Computer] School bus.
- [Mother] What were you saying about the bus?
- [Voiceover] Oh, what a treat at the end, that you got to hear me sing "Wheels on the Bus." But that was 44 seconds of wait time, which I almost interrupted a few times, because 44 seconds is a long time to wait silently if you think that you could help your child. But I would have helped all wrong. I would have helped by suggesting something that wasn't actually what he wanted to say. And then my helping would have confused him. It would have introduced other ideas. It would have muddied his thinking.
So the best thing to do is learn to wait. I live in New York City. I'm a fast walker and a fast talker, and this was a big challenge for me initially. And the final strategy... This is a question that comes up in online groups a lot. How will my child learn that their device is speech and not just another talking toy? Like the ones that I showed you with the buttons before. The answer: When you respond to it as if it is speech and not just another talking toy. Babies typically learn that their speech is purposeful when people start responding to it.
When a baby babbles, they just say, "Mama, mama," and then their mother, very happily, is like, "You said, 'Mama'! That's me!" And starts responding to it, and the baby learns, "Oh, look at that, so 'Mama' is an important thing to say. "That means something." Responding intentionally works the same way with AAC. Imagine that a kid pushes the button that says, "Fall." And you're thinking to yourself, "They didn't mean to say, 'Fall.' "We're sitting at the dinner table. "We're all just going to eat. "They should have said, 'Eat,' or, 'Drink,' or, 'Potatoes.'" But instead of ignoring them, you do this. And just fall right out of your chair on the floor. It really drives the point right home.
That type of intentional response, it honors their communication. It assigns meaning to the word. They're certainly going to remember that fall is important. And it adds a lot of motivation. Heidi Lostracco coined this as ReAACtion Therapy. There's a whole post on this, if you Google that, "ReAACtion Therapy and the Proof of Competence." Responding intentionally is the best way to honor the AAC of speech and to show them that it is a method of communication. You respond to every button that gets pushed the same way that you would if somebody is talking to you.
If somebody came up and spoke to you and said, "Pancakes," you wouldn't just walk away from them because that's a strange thing to say. You might say, "Oh, did you have pancakes today?" Or, "I love pancakes." Or, "My kids had chocolate chip pancakes for dinner," because they actually did have chocolate chip pancakes for dinner tonight. I'm going to skip video number 5 because I don't want to run out of time, and video number 6 is a lot better. This video I actually used in the first webinar too, but it's a really good one, so let me see if I can find it. It's the last video.
In this video, this is Will's very first morning playing with his own talker, and he is about to learn the word "drink," which he has never seen me use in front of him or touched before, although he's certainly seen his sister use AAC a lot. So his learning curve is way steeper than I would expect. Like I said, you should expect AAC use will take a while. Will's kind of an exception to this rule because of his family environment and the fact that he doesn't have motor impairments or language delays. He's about to see me use the word "drink," and he's going to use it, but he doesn't really mean to use it at first. He just pushes it because I pushed it.
- Want smoothie.
- [Mother] Smoothie, maybe later. Do you know what we do with a smoothie? We-- look, Will.
- [Computer] Drink.
- [Mother] We drink.
- [Computer] Drink. Drink.
- [Mother] We drink a smoothie.
- [Will] Oh.
- [Computer] Drink. Drink.
- [Mother] Do you need a drink? Here's your milk.
- [Will] No.
- [Computer] Drink. Drink.
- [Mother] You need a drink? Here's your milk.
- [Computer] Drink. Drink.
- [Mother] You need a drink? Here's your milk.
- [Computer] Drink. Drink. Drink.
- [Mother] You need a drink? Here's your milk. Oh my goodness.
- [Computer] Drink. Drink.
- [Mother] You need a drink? Here's your milk.
- [Computer] Drink. Drink.
- [Mother] You need a drink? Here's your milk. You know what else you could say? You could say, "More."
- [Computer] More.
- [Will] More.
- [Mother] More drink. Here's your milk.
- [Voiceover] That just pretty clearly shows that strategy. The idea is just to respond. Just treat everything that happens as intentional and keep responding. This is a review of what we covered today, with one of my favorite cartoons, which I did not draw. The artist's name is right there. But I think it perfectly represents AAC users. This is the stuff that we covered today. I am going to be doing a live Q&A on Thursday, answering questions, and I think that ... This is my contact information. I think that John is going to pop back on and talk about the Q&A right now, yes?
- [Voiceover] Yeah, absolutely. We're really excited to be offering a follow-up question and answer event. You'll notice I posted the link to that event in the chat window. This is just going to be a really great opportunity to kind of ask your questions to Dana and really have a great group discussion. So if you could please just send your questions to that email address that Bridget listed, email@example.com, what we'll do is we'll fold those in with the list of questions that we'll send Dana's way during the event. If you'd like to get your questions answered, please send them to that email address, and we'd be happy to insert those into the discussion.
The other thing I'd like to mention here is in a moment I'm going to put up a poll here. Us here at CTD, part of how we bring in great speakers like Dana is we like to understand who our audience is. If you could just take a quick moment and enter into this poll and let us know a little bit about your professional background, that would be very appreciated. Feel free to type any other additional questions you have in the window, and fill out the poll. And I'll also put the link to our survey up on the screen as well. Thank you, everyone, so much for attending, and a big thank-you to Dana for talking so expertly to this topic, with such great information. Once again, thank you, everyone, and a big thanks to Dana.
- [Voiceover] Thanks, everyone. I hope that was helpful, and I hope to see some of you guys back here on Thursday.
- Hello everybody. I'm not Dana, I'm Andy. And I'm from PACER Center, representing CTD Institute. We're going to start in just about a minute here. Dana, if you could please join us on the webcam. She'll be with us in just a moment. In the meantime, I would like to greet Ami Hani, Ana Puma, Barbara Thomas ... Debbie Kali ... Jackie Morales, Jacqueline Lewis, Lisa, and I think that's all we've got so far. A few more will filter in. Looks like we have a lot of Starbucks drinkers tonight. I tried to find some coffee places that were on the East Coast, and I haven't heard of some of these but it's the Cafe Q&A, so I thought we'd start with a coffee theme. Ok, we will ... hide that for now.
And those of you that are in attendance, I will bring this poll up at the end of our session as well. But if you could please put in what your role is, so we can find out who are audience is a little bit better. We have administrator, advocate, AT professional or professional therapist, if you're an educator or a special educator, family support organization, or if you're a parent, caretaker, or family member, service provider, or student. Ok, let's see, we got seven, eight, we have eight participants. Ok, thank you everyone so much for putting in that info. We really do appreciate it. Ok and I will make a brief introduction of Dana Nieder. She is the author of the Uncommon Sense blog. And ... she has presented for us a couples this year so far, in May and two nights ago. So we are continuing on with the second part of the session, and this is our Q&A, where you are free to put in questions and comments, in the comments and question pod. And we have a few questions here that have been gathered from some of you that attended a couple nights ago, from her webinar on AAC. And without further ado, please take it away, Dana Nieder.
- Can you guys see me and hear me ok? Somebody's typing, so hopefully that's a yes. Ok, good. So like Andy said, I have some questions that were sent over from the webinar, so I'm just going to kind of start working through some of those. But feel free to jump in with questions or comments. All of us are smarter than just me. So, the more the merrier. The first question here came in and said, "For a parent who's new to the idea of their child communicating with technology, what are some words of encouragement for them?" And I think it kind of depends on exactly what their personal struggles are. I know that some parents are resistant to pursuing technology as a voice for their child initially.
And to those parents I think I would say that, AAC, in addition to augmenting and providing an alternate route for speech, is also an intervention approach, a recognized intervention approach, in speech therapy. Meaning that it aids in the development of language skills and also in the acquisition of verbal speech. And so maybe that would be a good starting point, just to approach it as, "We're going to try this "as an intervention," rather than thinking too much of it as a possible future primary means of communication. It can help speech up speech acquisition for children.
And really the bottom line is that, at the end of the day, it's not really about you. It's about the child and their right to communication and their right to some form of accessible communication immediately, while speech is developing. And then there other parents who are kind of in the same situation that I was in, when I started pursuing AAC for Maya, in that, I was totally overwhelmed. Five and half years ago, I had literally never heard of AAC, I had no idea what it was. And so when I heard of that, I knew I wanted it, but I was overwhelmed in how to get started, or what to do, where to go.
And so to those parents, I would say, "You can do this. "There's a lot of resources, especially on the Internet now, "and you can drive this bus and figure things out, "at least enough to get started, "if you're stuck in a position "where you have to do it by yourself." Which is the position that I found myself in, and a lot of families do. So I have some resources. I'm going to start cutting and pasting some things, some links. If you are in the position where you're going to be in charge of your child's AAC for a little while, you've gotta get on board with social media. The reason that I joined Twitter was when I was researching different systems and trying to figure out what to do next. And I was already on Facebook but started kind of looking into different groups. So here are some things. Let's see if I can start cutting and pasting things in.
There are some great user groups on Facebook. My personal favorite, which has a really nice mix of professionals and AAC families and, importantly, AAC users themselves, is the Speak for Yourself users group. And here, let's see if I can get this going here. There's a link for that group on Facebook. It's not just Speak for Yourself users, although that's the name of the group. There's people using lots of different systems. You definitely want to follow PrAACtical AAC ... on Facebook and Twitter too, if you're jumping onto Twitter, there's their link. Carole, who runs PrAACtical AAC, along with her former partner Robin, her partner in running the site, they've written amazing articles. And Carole now continues to put up amazing content and share great things about best practices and guest posts from different people.
You would want to follow ... Lauren Enders' Facebook page. She is like the queen of links. She is sharing tons of articles and research ... every day. There you go. Then there are, this is my blog's page on Facebook. Kind of a mixed bag. But it gives you some personal stories, and that's probably the best place to contact me if you have questions and things that can help you through this Facebook page. There are also groups for specific devices and apps, if you're using the LAMP app, there's a users group for that. There's a DynaVox users group. I'm pretty sure there's a TouchChat users group. There's an Avaz users group.
There's lots of users groups, along with groups for different diagnoses. And then on Twitter ... Twitter, here's my list of Twitter hashtags to follow. Ok, so on Twitter, which takes a little while to figure out if you're new to Twitter. But those are the hashtags that I would recommend checking out. AAC is kind of mixed, because apparently it also stands for some athletic conferences. But alt-com, the slpeeps hashtag is for speech language pathologists, and even though I was a kind of wide-eyed, new-to-AAC parent, there was a lot of research there and a lot of things about the perspective of an SLP that I found to be really helpful. If you're not afraid of kind of academic reading, it's a good place to really get in there and understand the field a little bit better, from the professional point of view. So maybe that answers that question. Any other thought on it, before I move on? I'll wait a second.
- [Andy] So, can you tell us a little bit about, if it's easier to start with Twitter or Facebook, or start with both. Do you have any thoughts on that?
- I found back then there were a few specific users, an AAC family or two who was further along the path than I was. And I was really trying to touch base with a few people and found them to be more accessible through Twitter, rather than on Facebook, where you have to friend someone. You know, that felt a little awkward. But you can follow anyone on Twitter and send them a little private message with a question. And that's how I connected with a lot of professionals, who were really supportive and helpful to me in the beginning.
I think now, with so many users groups on Facebook, five years ago those just weren't a thing, that there's a lot of support now, in those groups, especially a group that has a mix of parents and professionals I've found to be really helpful. Because asking one question can yield results from several different kind of categories of people, and you can hear how a professional would approach something or you can hear how families have dealt with similar challenges at home to the ones you might be dealing with.
And I think the only thing to be cautious of is, we all, I think everyone here wants to approach things from the perspective of presuming competence, using big systems, not starting small. And I think that you kind of have to have a discerning ear, or eye, when you're on social media. And if you start to see perspectives that aren't in line with that philosophy, know what to filter out. But I've made some amazing connections in both of those places. And without the support of social media, I think that our story would have been very different, or quite a bit protracted as I struggled to figure things out on my own, without that support.
- [Andy] Ok, thank you.
- "So what are some tips for parents who feel overwhelmed at first, with a robust AAC system?" You'll get it. Next question. Just kidding. Yeah, I think that maybe one good piece of advice is to sit with being overwhelmed a little. If you're looking at a system for the first time and finding it to be overwhelming, appreciate that. And really sit in it and say, "Look at all of this." Because when you introduce your child to this system, they're going to have the same experience. I think pretty quickly you'll see that you start relying on the text, reading all the labels for things.
And so as you're kind of new and overwhelmed, think about the fact that your child is not gonna have the same access to that text if they don't have literacy that we have as children. So it's good to appreciate that because it kind of will help guide you in how you simplify and scaffold the system, to make it accessible for you as a new user and then also for your child. And as you kind of scaffold it down, and simplify it, then you start using it. And that's really the easiest way to gain access or familiarity with the system is just to really start using it as much as possible.
First when your kids are asleep, and then ... with them during the day and modeling, and it's kind of like, you kind of just, you fake it. And you just kind of keep faking it until one day you realize you're not faking it anymore, that you really have become adept at navigating it, and that you've gained fluency in using that other language. And it's kind of like any other complicated thing that parents have to deal with. If your child needed hearing aids, or if they were asthmatic and you had to do the nebulizer treatments, you just don't get to opt out. You don't get to say, "Oh, "that's a little complicated for me, so I don't think so." You just figure it out. You keep trying, and you get better at it.
- [Andy] Ok, all right. Let's see, let's look at the question from Kelly. Do you see that on your side, Dana?
- I do. Yep, I see two questions from Kelly.
- [Andy] Ok, I'm going to change these to red to indicate that they're the question that's on the deck right now that you're addressing. How 'bout that?
- Ok. So Kelly asked, "Any recommendations for low-cost AAC apps? "I'm looking for technology to play with but could not justify spending $200 on Speak for Yourself or more on apps such as Proloquo2Go just for this reason." I don't have any low-cost AAC apps that I could recommend. Really, I'm not sure exactly what she means by playing with it. I'm not sure exactly what the intention is. If you're a professional, for anybody out there who might be an SLP, I know that there are several apps that you can get a free copy of for trial-ing with clients or students.
I know Speak for Yourself has a professional copy. I'm pretty sure that DynaVox Compass does a professional copy. I'm honestly not sure about the others, but it never hurts to ask if you have one that you're looking at but you want to experiment with. Speak for Yourself also has a lite version which is free. It maybe has like six core words open and a few secondary words, just for the purpose of kind of toying with it, to see if it might be a possibility that works. But there's a wide field of AAC apps, and if you're looking for something free or low-cost to play with, the best place to look is Jane Farrall's list, who is ... There, that's how her name is spelled, Jane Farrall, two Rs, two Ls.
And if you Google Jane Farrall's AAC app list, she has a huge, extensive list, which she basically reviewed everything on the market. Sorry, I have a little cold, so I keep clearing my throat. She's kind of reviewed everything that's out there. And so that would be the place to go, to find what you're looking for. And her second question was, "How do you tell the difference "between exploring, practicing, or playing, "versus just stimming? "Should this distinction be made? "I've definitely seen this done in my observations of self-contained classrooms, and I'm wondering if this not the best idea after all."
So on Tuesday we kind of talked a little bit about stimming versus babbling. Babbling being a really important part of learning a device, having free time to explore, to press buttons. I talked about the different reasons why somebody might babble, like they like the auditory feedback of the noises, or they're trying to annoy their mother, because both of my kids have done that before. Or they're memorizing the locations, or practicing finding words. Or learning the auditory pattern for a word in their head, kind of doing that auditory rehearsing, like if you listen to your new favorite song on the radio and you listen over and over again to learn the melody so that you can sing along.
A lot of professionals who aren't very immersed in AAC best practices think of this type of babbling as stimming, and that it's a negative thing that needs to be corrected. And it's an interesting question, how to make the distinction. I think that it's worth trying to analyze what the motivation is, simply for your own knowledge of what the user is going through. Do they need that auditory repetition? Are they learning something, is there a specific set of words that they're really focused on, that maybe you want to open up or that you want to explore? But in a classroom, I really think that the bottom line comes down to responding to the AAC device and the AAC user as you would if it was speech from a typical child.
So if it's the middle of class and Maya is making a giant string of "No, no, no, no, no, no, no, no, no, no, no, no, no," I would expect that her teacher would say, "Maya, that's not appropriate right now. "We're not calling out no." The same as you would if a typical child were using their voice that way. That's kind of my nonprofessional answer. As I thought more about it, I thought also, in terms of stimming, I think I would also think about whether there was a certain area of the screen that was being accessed repeatedly. Could there be an access issue if somebody's really only targeting one area, in terms of access, are they having trouble getting to different areas? So I think that would also be worth analyzing. But again, that's just kind of me thinking aloud. I'm not in a professional classroom or haven't worked with a ton of AAC users, so there's my best guess.
- [Andy] Ok, thank you Dana. I'm going to paste in a question from Lisa, that put it in the chat pod a few minutes ago. Do you see it there?
- I do. I'm looking right now. Ooh, that is interesting. Ok, so Lisa says she has 3-year-old twins, in case you're not reading along and just listening. She has 3-year-old twins, both with autism spectrum disorder and nonverbal. And she's looking at AAC and wondering if I would have any tips on how to work with both of them at the same time with modeling, when they are very different, in terms of understanding and attention. That's a great question. So I have two children who, Maya is 7 and she has been a primary AAC user since she was 3, 3 1/2. And then Will is her little brother, who is now 3.
And we gave him an AAC device at 17 months, just because she had one. So he has difficult speech for a 3-year-old but uses AAC sometimes to repair his speech. For a little while, they were both using AAC a lot, and that was probably when WIll was maybe 2, 2 1/2, right in that spot of toddler development where you're understanding everything but you can't really make it come out quite yet. And so I was in a situation where I had two users at home with me, who were very different. So Maya was more advanced, had more sophisticated language, Will was a little guy who couldn't have all the same buttons open. But in terms of modeling for both of them, hm, it's an interesting question. I think that I tended to just model the way that I would have for her, who is the more advanced user, and he had a simpler page set.
So we had two devices, Maya had her iPad mini, Will had a full-size iPad. And so I would model for both of them, kind of sit between them and I would model for both of them. But his screen was much more simplified, so she maybe got a few more advanced words that he wasn't getting. You know, if I said, "Let's go play," I might model the whole thing for her, "let's" "go" play," and then for him just hit the "play" at the end. But I think it really depends on your kids, because pretty quickly he wanted to see what was going on on her screen, and he wanted his screen to look like her screen. But if you think about, kind of any AAC question that I puzzle over for a little while, I go back to thinking, "What would happen if they were both two kids learning speech."
And what would happen is, they would both be listening to you. Whatever sentence comes out of your mouth, they're both going to hear at the same time. And so, when you think about the modeling, you might have to model a little bit differently, if maybe one child has some trouble attending or they're not going to focus on multiple-word combinations, but really they're both getting the same auditory input. And the same way that we speak to babies using all of our words before they're ready for words, you still want to provide enough of that accessible language input that they can both give it back to you. Kind of a tough question to answer without having a lot more information, so I feel like that answer was kind of vague. But without a ton of specifics, that's kind of the best that I can come up with. I hope that helps a little bit. But if you've a follow-up, just shoot it out there.
- [Andy] Ok, all right. Thank you, and thank you to Lisa as well for that question. Ok, Dana, why don't you get to pick the next one, maybe from Beau or Jordana?
- Oh, ok, let me see. Ok, I see Beau's question here. So, Beau says-- Excuse me. Beau says, "For many months, my daughter's primary means "of communication has been signing. "We've modeled a lot of signs, "but the only ones that she's using consistently "are eat and more. "As we model Speech for Yourself at mealtimes, "she clearly signs eat and more, "but is reluctant to use the app. "So she's communicating for every bite but just not "with Speak for Yourself. "Can you talk about how to handle modeling, "when the child is signing? "After all, we don't want to discourage signing, "if she's reliably using it to communicate. "Should we just use the app to repeat eat and more "and then add whatever words are relevant, "in the hopes she'll eventually use signs and the device?" Well the goal is communication, right? So we want our kids to become communicators and they're going to have to make the choices of how to communicate on their own.
So whatever works, works. Now the trick of it is, that the output has to be receivable to the communication partner. So if you're eating dinner with your daughter and she's signing, that's great output for her, she's choosing how to communicate. And it's receivable to you, because you understand her signs. That's a great situation. I wouldn't stress at all about her switching to use the device in a situation like that, because she's choosing something, some way to communicate. And I would just honor that and that's fantastic. The problem will be if she goes to school and they don't understand her signs for eat and more. Or if she has a substitute teacher or is trying to talk to a nurse at a doctor's appointment and they don't know those signs.
So as Maya has kind of developed more speech over the years, she's dropped out some words from AAC for a long time. And now they're kind of coming back, because she'll make questions and sentences where she'll put all the words in. But for a while, when she gained a word in speech, she tended not to use that on the device. I remember when she was little ... probably 3 1/2 or maybe 4, she was saying the sentence "I want yogurt please." And with speech, she could say, "I want please." But she didn't have a sound for yogurt, so what she did is, she turned to me and she said, "I want" and used her device and said "yogurt" and then went back to speech and said "please." So it seems just like Maya crafted a sentence, where she was using speech and the app. And when she started doing that, what I would do is just continue to model, especially words that I thought might be more difficult for a listener to understand.
So in the example that you have at dinnertime, if she signs "more," I would probably say, "Oh you want more? Ok." And as I said "more," I would activate that on the device. So "Oh you want more? Ok, here you go." Kind of showing her, I totally get your "more," and it's perfect and I'm going to honor that communication. But also showing her at the same time, if somebody didn't get that "more," here's how you do it with your device. So that she's still getting that modeling instruction to know there are many ways of getting this point across, and if I'm in a situation where the sign doesn't work, I have it here, in a different way.
Yeah, well you also said communicating with every bite, which was probably just for the sake of the example, and I remember, I remember reaching out to somebody who was an AAC parent whose child was older and saying In the beginning, "How did you do it? "What words did you start with? "How did you start doing it?" And he said to me, "It was a lot of food." "A lot of like, Oh she said cookie? Give her another one." Just because kids love food, I mean I love food, everyone loves food. So food is a great motivator, but also I wouldn't, don't make her communicate for every bite. Because if I made my son communicate for every bite, he'd be like, "Are you kidding me? "You know I want another bite." There's no greater motivation than food. I mean, I would do some more great stuff for more food too.
I've got tea right now, but I'm going to have candy when we're done. I hope that helps. And that's kind of what I still do with Maya. At school, they tell me a lot, "Oh we understand her. "She wants to talk. "She doesn't want to use the device at school." She's the only device-user in her class. Her speech really, in the past year, has been developing a lot. She mostly talks at home. But she uses the device to say more sophisticated ideas, and that's what I keep telling them. "You just have to model. "She will not be able to speak in a way that's understandable if a substitute comes in. She will not be able to tell you, I went to the playground on Thursday and I saw that one girl that I knew from preschool, with her voice. You're not going to get it."
And I know that they think they understand things that she's saying, that even when I just kind of dropped in, and go, "She didn't say more, she said mouse because there was a picture over there." And so I'm just costantly telling them, "Honor her speech, it's fantastic. "If she doesn't want to use the device, never say "you need to use this, or say it with your device. "But what you can say is, I don't understand. "Let's find a different way to say that. "And what you can be doing is just modeling throughout the day, so that should she have a communication breakdown, she knows, oh I always use mini when I'm here, because that's another way to say this."
- [Andy] Ok, thank you for that. And boy, that was a terrific question. It's funny how so many things keep coming back to food and working with young people, isn't it?
- Yeah, I mean--
- Everyone loves food.
- [Andy] Ok, next question, you pick.
- Ok, I'm trying to, let's see ... Ok, here's Jordana's question. "I am wondering whether you continued using no tech AAC with Maya when helping her learn Speak for Yourself at home." Yes, I did. At the time, she was using something that I called the word book, which is like this really big three-inch yellow binder just stuffed with pages of velcro cards. And we had been using that maybe two months, maybe three months, right before we got Speak for Yourself. And so that giant binder traveled back and forth with her to preschool. She was about 3 1/2.
And when we got the app, we started using it at home, and we just kind of always had the binder right there. So, again, the kids get to choose. It's their communication, they have to pick whatever feels the most organic and natural to them. I didn't ever want her to think, "Oh, I want to say this thing and I know right where it is in my binder but I don't know where it is in this new system." It's not really fair to pull the rug out from under her and say, "Oh, you've been speaking binder language and now, no more of that, we only speak iPad language." We started with Speak for Yourself at home. We had it at home for maybe eight or nine days before we started sending it into the preschool.
And then I would send both of them, so went sent in the iPad and the word book. And I think it was about two weeks later that I got a note from the teacher in the communication notebook, and I saved the note, I took a picture of it, and it said, "You don't need to send the word book anymore. "She never looks for it. "She's doing a great job with the app "and that's all that she wants." So we let it be her choice. And then the word book sat on her little bookshelf in her room, for I guess like two years probably. And sometimes she'd pull it out and take all the cards off and play with them. But she no longer wanted to use it in that communicative way, it was kind of something fun to play with.
"Do I have an opinion"-- Excuse me. "About whether to use photos or symbols "for beginning users, when programming new words "in Speak for Yourself?" No, I don't really have an opinion. I think that the general information is that if you're using a system like Speak for Yourself or the LAMP Words for Life app or a PRC device or the new, I haven't seen it yet but I think the new Proloquo2Go page sets the bigger ones are more motor-planning based, so the words can stay the same. And the idea is, if you're using a system where the words are always in the same place, the actual kind of icon isn't as important, because the child doesn't have to rely as much as scanning and recognizing those pictures, since they're always in the same place.
Similar to how you don't look at the letters on your keyboard when you're typing if you've been typing for a long time because you just know where they are. That being said, you just pick whatever you feel like works best for you. There were definitely some tiles that we had been using in the word book with certain, I think at that point they were Boardmaker images. I know that I moved the one over for yogurt. I think for milk, I just felt like we had already been using some symbols, and even though it might not be that important, any little tiny thing I could do to kind of facilitate her transition to the new system, I was really excited to do, because I felt like it gave me a little bit more of a purpose, as I was trying to help her kind of immerse herself in the new system.
Certainly for people who use photos ... it's not as important to her now, because she also can read the labels. So for her friends at school this year, we just have their names and the little cartoon pictures, because she can recognize the names of who they are. But when she was in preschool we used photos, because that was just a better thing to do for her. But in terms of the actual symbol language, if you're using something with motor planning, it doesn't really matter as much.
- [Andy] Ok, hey there's a follow-up question from Jordana here, in the comment box. She says, "Just wondering if she pointed to pictures in the binder or removed the picture to exchange."
- She, kind of a combination. Well, she pointed. So the front of the binder also had velcro on it and inside were these sheets with a few hundred words, I think, by the time we were done. And I used the front of the binder almost like a static board display, with words that could kind of rotate in and out. So there were some words that were always fixed, like I, you, help, more, bathroom, yes, no. And then other words like types of foods, types of animals, they were kind of noun-heavy, because I didn't really know how else to do it. I didn't know, have any idea how somebody would do verb tenses or something with velcro cards.
But if we were going to the zoo, we would take out a bunch of the animal cards and put them on the front of the binder, so that she could talk about zoo animals without needing to flip around. If something wasn't on the front, and she wanted to talk about it, she would take that card out of the binder and stick it on the front. But, no, we didn't do like a pack system, sort of exchange protocol. Just motorically, I didn't really see the point of it. It's hard for her to pick up the cards, it's hard for her to do velcro. And I knew that I was hoping to move to a system that would be high-tech and give her a large amount of vocabulary. And so she would kind of point to it, and I would read the words. I'm thinking right now, I know there is a video of her pointing, like "I want milk please," and I would, as she kind of pressed it with her finger, I would read it out repeatedly.
- [Andy] Ok, thanks. Hey, what do you think of question number eight there? I think that's a question that comes up a lot. I mean, I know a lot of people have this on their mind, about how much to help and how much to let their child struggle to get it for themselves.
- It's so tricky. It's a hard question. So number eight asks about, if you're listening along, instead of reading, it says, "For a parent that's used "to mind reading, and speaking on behalf of their child, "it can test their patience when waiting for a child new to AAC to complete their thoughts. Can you elaborate some more on why it's so important to wait and not fill in the blanks, as your child uses AAC?" So, I think it's hard, because if you're the parent of a nonspeaker, like I am, man, our kids have to work really hard, don't they, to say anything? I see my son, who has typical speech, and he can just like It's been amazing to watch him talk so much.
And also, it's kind of driven the point home again from a few years ago, Maya works so hard. She works so hard. And so, if I think I know what she wants. Or, I'll speak in the past tense, because this is more my perspective a while ago. If I thought, if she went and stood in front of the freezer, at breakfast time, and I knew, or I thought I knew, that she wanted a waffle from the freezer for breakfast, it's really hard not to facilitate that, to jump in and say, "Oh honey, you want a waffle?" Because we just want to help. It seems like I'm making things more difficult for her by waiting, by making her come up with, making her say something.
But as time has gone on, and I've learned more about AAC users and thought more about it and kind of analyzed and self-analyzed, our kids learn to be passive in conversation really early on. Whereas a child with typical speech learns to take their conversational turns, to argue, to speak up for themselves. Our kids do a lot of learning, and if they just wait like this ... or maybe make a noise or point, or get up in their parents' face, that somebody's going to come and help them out. Maya knew from a very young age, that if we were in the elevator and the neighbor said, "Hi Maya, how are you?" she just kind of would look.
And she knew eventually I'd be like, "She's good. We're going to the mall." Or, "We're going for a walk, going to the playground." We're used to stepping in and kind of saving them. And they need to start stepping up to that plate, because the world is not gonna fill everything in correctly. So in terms of the whole mind-reading idea, here's what happens if you're filling things in. Let's think of a few examples. If your child comes home from school and points to the cabinet where their favorite cookies are, a pretty reasonable assumption would be like, "Hey, I'm home, let's have those cookies, "let's have a snack."
But, what if the person they sat next to at lunch brought those cookies in for lunch today. And they want to tell you that. What if the matron on the bus sits with a bag of cookies every day on the way home and eats them? What if their teacher was handing out cookies to everyone today and ran out right before they got to your child and they didn't get a cookie? You can invent a million complicated narratives that our children would have no way of saying. And if you step in with, "Oh, you want a cookie?" then probably they're just going to be like, "Ok, yeah sure, give me a cookie." Because, what else is there to do? Or if you have a dog and the dog sneezes, and the child points at the dog and laughs, it could be "Sneezes are funny." Or, "That was just funny, how the dog sneezed." Or it could be like, "Remember that one time I was trying to sleep, and the dog kept sneezing." Or, "Remember when Grandma sneezed "and knocked over the water at Thanksgiving?"
It could be anything, and if we are ... making these mind-reading kind of predictions of what they're trying to say, we are subconsciously and completely unintentionally limiting kind of what we think of as their speech capability. And we are limiting them to only communicating about the stuff in the immediate surroundings, generally, if they're pointing or gesturing or walking to something. And we're also limiting them to only talking about things that are happening in the present tense.
So if you don't have a way to refer to "remember when" if something happened in the past or to talk about something that's gonna happen in the future like, "Could we go get more of those cookies "tomorrow, when we're at the store?" You're going to unintentionally, probably, simplify some of their thoughts. And that's unfortunate road, to kind of start walking down. And it took really thinking about some of these kinds of examples for me to really get it all the way, and to see that the long-term importance of encouraging your child to speak up and waiting them out and making some things more difficult, making them get a little frustrated and starting to advocate for themselves at home and kind of fight to speak up a little bit. They're gonna have to learn that lesson.
It's true they have to learn that lesson because otherwise you've got a child who can't speak out in the big bad world, where we're not going to be all the time. And so, even though it feels difficult and unfair sometimes, for us to make things tricky for them, the safest way and the best way to start learning that is to do it at home, where they're gonna have our support. So it's not mean to wait them out and make them fight to speak up a little bit. It has to happen. And even if you think you're reading their mind, you're getting it wrong sometimes. And it's a good thing that you're getting it wrong, because that means that their thoughts are probably more complicated and interesting than you're assuming.
- [Andy] Ok, thank you for that. It's a simple question with a complex answer. A lot of things to take away from that. It sounds like some things in there about you might be hijacking their opportunity to learn on their own. Yeah, thank you. Ok, thank you. How 'bout another one?
- [Andy] Is your throat holding out? Yeah, I kind of feel bad that I keep coughing, and there's nothing I can do. Uh, let me see, I'm trying to kind of see which ones we've done already. Oh, ok wait. I see one. Ok, number three on this list. It said, "If you're new AAC, "sometimes it feels like the best choice "is to let professionals guide the AAC process. "Can you speak to why it's important for a parent "to be invested and engaged in their child's AAC learning?" Sure. So, this was definitely something that I did as well. I started learning about AAC, I did a bunch of research. I had the company come to my home to show me their products.
I watched videos and a ton of apps online and emailed users and emailed companies. And then I signed Maya up to get an AAC evaluation from the board of ed. And I thought, "I have been really educating myself "and I'm ready for this type of meeting, "but also I want her to be evaluated by a professional, "and they will be able to help guide us." I had some meetings, but I thought this professional will be able to help guide us to the right path.
And what I learned was, even though if we think about our approach, I kind of assume that all of us here are on the same page about presuming competence and starting with a robust vocabulary and kind of immersing our children in language, assuming we immerse typically-speaking children in speech input, we're going to immerse our AAC children in modeling. It all seems very much like common sense. But what I didn't realize was that so many professionals still subscribe to an older model of like, "Ok, if we have a child who's never used anything before, "let's give them eight buttons so as not to overwhelm them, "and let them learn the system and once they show mastery "of that, they'll be ready for more."
And as much as I disagree with that approach, I can see the rationale. I can see why somebody who has been working, and employed, conceivably by other people who have the same mindset, would think that that approach is commonsense. That we wouldn't want to give somebody so many buttons and overwhelm them, and they won't be able to use the system and they'll be discouraged. I saw how that line of thinking also seems like commonsense.
So professionals who subscribe to that sort of philosophy would think that they're doing the right thing. But might totally not be doing the right thing. Which is why it's so important for us, as parents and advocates, to make sure that we're educated. And if we decide to get a formal evaluation done, to be ready to critique that evaluation, from a research standpoint, from a commonsense standpoint, from the standpoint of that sort of candidacy model being outdated, like from the '90s and now the model being that everyone deserves AAC, everyone has the right to Free to Speak.
And the important thing here is that the parents know. You know your kids. So I saw Maya had several evaluations, and in this AAC evaluation, the evaluator asked her, she had a display with different animal cartoons, farm animals, and a few zoo animals around there too. And so she took out a few little plastic animals, like a sheep and a horse and an animal or something, and said, "Ok Maya, here's the board. "Which animal do you want to play with? "The cow, the sheep, or the chicken?" And Maya looked around the board really carefully with the stuff and then hit zebra, and looked over at me and went ... And just gave me this smile like she knew it was funny.
She was like, "Hm, zebra. "You don't have a zebra, let's see what happens next?" And the evaluator was like, "Hm, ok. "Didn't know how to pick one of the choices that I outlined." Got that one wrong. So we have to be involved, and we have to ensure that whoever is driving the AAC bus for our children is the one who believes in them the most. And knowledge of AAC systems, particularly small AAC systems, doesn't make somebody more qualified to make decisions about our children's systems than a parent who is ready to presume competence and to do the work of implementing at home. Because any AAC professional should know that the factor that will most determine that child's success is not even the system that they're using but the amount of involvement and modeling that's going to happen in all of the aspects of the child's life, especially at home with their family.
- [Andy] Ok, thank you. Hey, I'm going to ... add in a question here, near the top. This was somewhat of a late addition from Maureen. I don't know that she is present tonight, but she sent it through email earlier. Do you see it at the very top?
- Um ... Oh yes, no I do now. Yes, ok so Maureen is wondering how to balance being too demanding with the school team. She wants to get more training from her to the paraprofessionals and is struggling on how many people to include on emails and whether to stop emailing the people that she knows are not open to really learning to use the system. Also, how to get a spouse on board with you using a speech-generating device more.
Ok, so there's a few different things in there. Getting the team on board is tricky. And I used to be a classroom teacher. I was a fifth- and sixth-grade science teacher for nine years, before I kind of entered this world of special needs. So I try to really think of it kind of all around the topic, what would it be like if you were in the school, what it's like if you are the parent. And it's tricky. I try to start with understanding what's happening in the classroom or at the school that is the barrier to their ability to embrace the device. So, do they feel shorthanded in the classroom? Is the child not showing interest in the device in the classroom, and so it feels like a fight to even get it on the desk in front of them, 'cause they don't want it there? Are they lacking training? Do they erroneously feel like it's too complicated for the child to use?
Getting to the heart of what the problem is, I think, is kind of key in figuring out what the best solution is. Because you want to start by understanding the people that you're talking to. If you're just kind of saying, "You need to do this," that's not going to be the best way, obviously, to kind of draw everyone together. In terms of kind of getting training in, starting to really educate the team and help them support your child, I would probably ask for a meeting with the paraprofessionals. But also I would probably bring treats. I would bring a few boxes of donuts and a carton of coffee from Dunkin' Donuts, or bagels, or if it's after school, a few bags of candy, or something, just something that's like, "I appreciate what you're doing. "I can't wait for you--".
Food brings people together. It's true though. I mean, I've been to so many professional development meetings, and if they just kind of pass around a bag of KitKats or something, you know, they're "Oh thanks. "Thanks for appreciating the fact that it's the end "of the day for me, I'm tired. "And thank you for doing something "to kind us treat us nicely." So I would do that. I would say, "I am so excited to meet with you guys. "I few a few really great things to show you. "I would love to bring in breakfast on Friday morning "before school and meet with you guys." Or, "I would love to bring in something, whatever, "after school, and have a quick 30-minute meeting." It's just like a nice touch to kind of draw everyone in.
I would, at that meeting, I would show videos. I think videos are one of the most powerful ways to get people on board who might be hesitating. If they are AAC nonbelievers, the videos help them see, and seeing is believing. If they just feel a little bit sensitive, maybe AAC is new to them and they feel uncomfortable because they're not familiar with it, or they feel like they wouldn't be able to do it or do a good job. Just a few videos that show how simple modeling is, that it's just pushing buttons while we talk. "You guys can totally do this and be amazing at it."
Any good videos are good, but videos with your kid are the best. If you could set up a tripod and get a few videos clips of him using it at home, of you using it with him at home, a quick little conversation exchange, him saying something. People get excited. Your kids at home, hopefully they care deeply about the kids that they're working with, and they are going to want to facilitate that sort of success, when they see it happening. "Should I email people who--" Ok, yeah, so if you're in a situation where you feel like you're just begging everyone to participate all the time, I would try to find an inside man.
So find whichever professional seems to be the most interested. Or whichever professional seems to kind of honor your kid the most. Maybe they don't know anything about AAC but you can tell that that occupational therapist really loves your kid, then that's the person you want to get. Get somebody inside to be on board with you, so that when you're going to a meeting, you can bring that person in and say, "You know, Mrs. Smith is using it in OT "and she's really seeing some great things happening. "Could you talk a little bit about that, Mrs. Smith?" If you can't find somebody on the inside, to be your inside man, try to bring in an outside man. So a private speech therapist who is on board with AAC, a device rep, or a rep from one of the app companies who might travel and do professional development, some other speech language pathologist. Just somebody who is a professional, because sometimes, as unfortunate as it is, sometimes a parent is just a parent. Which is one of the reasons that I'm now in school to become a speech pathologist.
Because it's frustrating, especially if you know a lot about what you're doing. But sometimes you just need to find somebody else who is a professional, to come in and basically say everything that you were saying, but with that certification behind their name. And then you can just kind of sit there and nod along and be like, "Hm, excellent point. "I've noted several times this year, "but we should definitely all listen to it, "now that we have some great professionals here "who are saying it too." And sometimes that's it, just finding a partner, whether it's on the inside or the outside, so that it's not just you. Because it's frustrating and difficult for it to feel like you're in a situation where it's you versus the team. So you gotta find a way to wiggle that in, whether it's food or convincing somebody to help out from the inside or bringing in an expert who might be able to view more of a universal sort of perspective--
- [Andy] Ok, we are just about out of time. We have one minute left. Dana, I was wondering if you could quickly respond to the second to the last question in our notes window here, the one that talks about culturally laden images. If you could just say a few words on that, I know we're running short on time. And thank you, everyone who has stuck with us for this last hour. Go ahead, Dana?
- Yeah, well it's easy for me to only say a few words on that, because I don't know too much about that. The question says, "So many images and icons are used for AAC, and I wonder how these culturally laden images play out, when used by children from a different background." Which is a really interesting point, that I had really never spent any time thinking about, before seeing this question. And then I tried to kind of think through some of them in my head. And some of the symbol languages are pretty straightforward, like SymbolStix comes to mind.
Which a lot of it is based in stick figures, which are I think not super culturally biased, although I don't know, maybe other cultures don't use stick figures. But certainly things like an eat button that has a picture of a hamburger on it, if you have never eaten a hamburger, or you're not from a culture that eats hamburgers. It was interesting to think about. So I really don't know. I don't if there are symbol sets that have been devised that are more ... kind of stemming from other cultures. What I do know is that, if you're using a tablet-based app, most of them have the ability to swap out images for anything that you want, so you could plug your own set in, that feels more culturally appropriate for your family. But again, I don't really know what other sets might be out there, or if you just--
- [Andy] All right, ok. A lot of good ideas there. Thank you so much. And that about wraps it up for this evening. I see by the clock on my wall that it is 8:31, Eastern Standard Time, and 7:30 for the Midwesterners like myself. I'd like to thank Lisa for her question, and a special thanks to Beau and Kelly and Jordana, who submitted some questions beforehand so that they could make this conversation much more rich and interactive. So thank you, thank you all. All right, we are concluded with our Q&A session, and we look forward to seeing you come onto ctdinstitute.org. And over and out. Thank you Dana.
- [Dana] Thanks Andy, have a good night. Thanks everyone for coming, it was great to talk.