Rachel:
Hi, everybody, and welcome to this week's CPF Live. I'm really excited to have Kristen Allison joining us today. Kristen is a speech language pathologist and assistant professor at Northeastern University, where she directs the Speech Motor Impairment and Learning lab. So, obviously the SMILE Lab. And her research focuses on improving speech and communication outcomes for children with cerebral palsy and other neurodevelopmental disorders. Kristen, thank you for joining us today.
Kristen Allison:
Thank you so much for having me, Rachel. I'm so happy to be here.
Rachel:
Of course. Now, I suppose we've got a few different things to talk about today. The title of this talk is The Importance of Communication for Participation, and I think I'd just like to start off with that first question at the beginning. How does communication impact participation for children with cerebral palsy?
Kristen Allison:
Yeah. Well, that's a great question. And the thing about communication in is there are several different dimensions to it. And we also know about children with cerebral palsy, that they really vary in their communication skills. So, for some children with CP, communication is really their strength and they don't have any difficulty with speech or language skills. Some other children have trouble with the actual physical process of speech production. So, speech and forming words is a motor act, like other types of movements. And so, the movements that are needed for speech production can also be affected for children with CP.
Kristen Allison:
And so for over half, probably at least close to 75% of children with CP have some trouble with actually the physical movements involved in speech production. And many of those children have a speech disorder called dysarthria. And what that can result in is trouble with producing speech clearly. And so, children who have this difficulty can have trouble with getting the breath support they need to produce speech. They can have trouble forming their speech sounds clearly, and it can result in people having trouble understanding what they're saying.
Kristen Allison:
So, when we think about the effects of that on participation, it can have a lot of effects on participation, particularly in social interactions. So, if children are having trouble being understood by others, that can make it hard for them to have conversations with peers and can be a limitation to making friends or affect how peers perceive them. Sometimes children who have trouble with clear speech are perceived to not be as smart as other children, even if they don't have any trouble with learning. And so, it can affect participation in lots of different ways. So, that's one aspect.
Rachel:
And before actually we keep going on, because it was a little bit remiss of me, we have so many people watching at the moment from around the world. And please everyone, write in the comments sections where you're watching from. We love to hear where you're joining us from. And we already have Sergio, thank you for joining us, Stacy, thank you for joining us as well. And I think we're really fortunate to be talking about this topic today, because as you said, it's such an important piece of how we live our daily lives, is how we communicate. And I think, all these different elements of how we think about communication as a tool for participation is really important. And it's not just about talking, there's lots of different components to communication.
Kristen Allison:
Right. Absolutely. Yes.
Rachel:
So please, as I said, let's start throwing in some questions. We've also got a question here, someone wants to know how to become an advocate for CP. So, we'll talk about that a little bit later. Let's keep focusing on communication for now. And I know a lot of people who are watching have potentially already assisted you with some of your research. We put out a call late last week about a research study, about communication for children between the ages of four and 17. So, thank you to everybody who's already responded to that. But if we keep going in a little bit further and we try to dive a little bit deeper around this, can you start talking a little bit about the differentiation between speech first language?
Kristen Allison:
Yes, absolutely. So, as I was saying, so communication is made up of really speech, which is the motor act of producing speech sounds, and then language, which is formulating the words and sentences and thoughts that you're trying to express. And both of those components are really key to being able to communicate your message. So, we know that some children with CP have trouble with actually the movements needed to produce speech sounds clearly. Other children have trouble with more of the language aspect, so figuring out what word they want to say, figuring out how to use different grammatical forms correctly. And many children have some difficulties with both aspects of that. Children who have trouble with language may also take a little bit longer to understand what people are saying to them. And so, both of those components together are really important to effective back and forth communication in social interactions.
Rachel:
I think that is the key, right? When we are thinking about social interactions, there's obviously someone's ability to express themselves and then there's also the ability to receive what's being said to them, and how to process that and what it means, so that then you can have this consistent back and forth. If we want to dive a little bit deeper into more how somebody can express themselves through communication and different language abilities, a question for you. So, we know obviously if a child is nonverbal, potentially they will use different communication devices or different means. But what does it mean for the children that are verbal? And you may have just frozen, I'm hoping you're going to come back.
Rachel:
Just having a little bit of technical difficulties. Kristen is frozen on my end, but I'm not sure if she's frozen for everybody else. So, I'm hoping that she can come back to this conversation. It looks like you're potentially frozen for everybody. Oh, I'm sure she's going to be joining us again. So, when Kristen comes back, I think that's what we really want to dive into. So, when we're thinking about communication, we're thinking about different language skills, what does that look like? And it's very different for everybody. And I think it's really important to have an understanding that communication isn't just about talking versus AAC. There are so many different modalities that everybody can use.
Rachel:
And so as we wait for Kristen to come back in, I just want everyone to put any questions that you have in the comments. We're absolutely going to try and answer any of these for you. And please let us know where you're from. We know a lot of you are from different places around the world. So, we'd love to hear where you're watching from today. And I'm hoping Kristen is back.
Kristen Allison:
I'm so sorry. I don't know what happened there.
Rachel:
No problem. I'm hoping it's not just on my end. I'm hoping it was just a piece and that it's going to now be working seamlessly for everyone.
Kristen Allison:
Yes.
Rachel:
So, I apologize if it broke off for anybody, but we will keep going. So, I was just saying to everyone, when we're talking about the different communication types that people use, I suppose, can we just dive a little bit deeper into that? And also, for the majority of people with cerebral palsy, the majority of them still talk.
Kristen Allison:
Yes.
Rachel:
AAC is an important component, but a lot of people use verbal communication.
Kristen Allison:
Right. Yes. So, there are definitely, there are different ways and different the different modalities people use to communicate can influence their social participation. So, for the children with CP who are AAC users, one of the challenges that can occur with using AAC is that the pace of communication can be fairly slow. For a lot of kids, it takes a longer time to formulate a message on an AAC device than it does verbally. And while it's a really important communication tool and the best mode of communication for some children, that can be a challenge to keeping up with a fast pace of a lot of social interactions.
Kristen Allison:
And then, as you said, for the kids who are verbal communicators, for some children who have difficulty with producing speech clearly, they might speak with a slower rate, which can also make it difficult for them to keep up with fast paced conversation. Or they may experience what we call communication breakdowns, which is when they're trying to convey a message and it's not understood the first time, by their communication partner. And so, they may have to learn strategies to navigate those types of breakdowns and to make sure that their message is understood. And that can be hard for kids who don't have the strategies yet to be able to figure out how to repair those communication breakdowns. And so, that's one of the ways that we want to learn how to better support children so they are as independent as possible in getting their message across successfully in those situations.
Rachel:
Can we just elaborate a little bit more on those sorts of strategies? Because I know obviously, when you're seeing a communication breakdown and it stops, sometimes you'll have parents or caregivers step in for them and try to explain what they're trying to say to the other person who's part of that communication. What are some of the best strategies that you can use or some tips and tricks to help people develop those strategies?
Kristen Allison:
Yeah. That's a great question and it's actually one of the questions we're trying to answer as part of this survey. So, there hasn't been a lot of research done comparing different strategies for this. But I think that the kinds of strategies that are helpful from a clinical standpoint, are helping support your child in trying to independently repair communication breakdown. So, some parents and in some situations, parents may want to just jump in and interpret for other people what their child is saying. And in some situations, that might be the most appropriate or necessary thing to do in that situation. But as much as possible, you want to try to empower children to learn how to compensate for these breakdowns as independently as possible.
Kristen Allison:
And so, there are strategies like asking the child to repeat what they said again, and to repeat it more slowly or to exaggerate certain sounds and words that can help make their speech more clearly understood. So, for some kids that might be a strategy that works. For other kids, maybe it's using a low tech augmentative communication device, or knowing when to switch to their AAC device, to repair these communication breakdowns. So, the strategies that work are very individualized, but that's an important thing for parents to work with their child's speech pathologists on, is learning what are strategies that are best for my child and how can I support them to be as independent as possible in having these successful social conversations?
Rachel:
And I think, there's a real, almost chance right now because of the pandemic and because of all our communication, like you and I right now, we would usually hopefully be doing something like this in-person, but we're doing it over Zoom and over the internet. So, it almost gives you an ability to try some different modes of communication while you're doing it. Because obviously, we are talking face-to-face right now, but if there was a communication breakdown, we could use the chat function if we have the ability to type or things like that. Are these things that you've seen schools or students or young children use more often?
Kristen Allison:
Well, I think that everybody is using a lot of these technologies more often now. I think it's maybe a little bit too early to tell how children with disabilities are going to adapt to some of these technologies. I think for a lot of children, at least here in the United States, when schools shut down in March, a lot of children lost services, they lost access to therapy services. In fact, I've been working with a colleague of mine, Danielle Levac, at Northeastern. And we worked together on a survey project, not just parents of children with CP, but of all types of disabilities, school-aged children, to look at the effect of the COVID pandemic on access to services. And what we found is that across the United States, in our sample, nearly half, 43% of children lost all of their therapy services at some point.
Kristen Allison:
Yeah, which really was a surprising number to me. I knew it was going to be high, but that was higher than I expected. So, I think there are a lot of barriers for kids right now, but I think there are a lot of opportunities for trying to figure out which aspects of technology work best for kids. And there's certainly a whole other dimension of participation in these kinds of virtual conversations and classrooms that are new territory for therapists, new territory for parents, and new territory for children. So, I think it's going to take a lot of creative problem solving to figure out how to help kids with CP maximize their social interaction over this virtual medium.
Rachel:
Yeah, no, absolutely. And I think, there are so many different outlets for that and exploring those, because obviously, you've got something like Google Teams or even some of the other online meeting pieces that do automatic translations and all these different things, that can be very helpful as we are looking at those different pieces. So, we've dived a little bit on it, but then talking about the difference between speech first language. So, now when we're thinking about language and what that means, can you just describe a little bit of that difference and why that's important as well?
Kristen Allison:
Sure. So, language really relates to the process of understanding the message that a person is trying to convey to you. And then, also formulating the message, the words and the meaning that you're trying to express to another person. So, when we think about talking, the first step in that is figuring out what it is that you want to say. And that involves a process of selecting words, putting them in the correct order, making sure that they're grammatically correct. And all of those pieces are language.
Kristen Allison:
And then, the next step in that is then figuring out how to have the muscles produce the message that you figured out that you wanted to say, and that physical act of producing that is speech. And so, that's the differentiation between the two. And so, for children who have trouble with both the language, understanding and formulation piece, in addition to potentially problems with some of the physical speech production, that can make communication even more challenging.
Rachel:
So, we have a question that's come in from Brad Searl. So, he uses 95% AAC for communicating, his son does, and he's asking, "Are there any strategies for the classroom with typical peers. Devices don't always allow communication fast enough during a lesson." And you touched on it a little bit, but when we're thinking about that two-way communication, that obviously is so important for participation and so important for this social interaction component. Do you have any strategies that can help, I suppose, are you trying to fill the void of that awkward silence, or is that okay?
Kristen Allison:
Well, I think there's a little bit of both there. I think there are some strategies that can help children be more efficient with communicating messages. So, one thing that can ... Depending on the type of device used, but pretty much any high tech device, there's options to record prerecorded messages, to have longer units that a child may frequently want to produce, that are already pre-programmed in there. And that can make it a lot faster to produce some of those types of responses, social responses, or phrases or things like that, that they may frequently want to say. So, they don't have to put all of the individual words together every single time, so that can help speed things up a little bit.
Kristen Allison:
But I think that there's also an important piece on the other side of training the other typically developing peers in the class, to be patient and to understand that it may take extra time for their friend with CP to put together their message of what they're trying to say. And to help support people on both end, the burden shouldn't be totally on the child with CP to keep up with peers. There should also be training for peers about how to appropriately include, what they can do to help better include their peers.
Rachel:
Is another strategy as well, when we're thinking about this two-way communication, is it helpful to then have pieces where the individual would then be asking a question back? So, for example, we have this two-way communication where if you said, "Hi, how are you?" I respond, "I'm really good, thank you." And then I have that question already pre-planned that's, "How are you?" So, that you're getting this back and forth. Are there common questions that you can put at the end of phrases, that people can have in there as well?
Kristen Allison:
Yes, absolutely. A lot of AAC systems have those kinds of social questions built into the vocabulary as well, in order to facilitate exactly what you just said, that back and forth social communication, so it's not a one-way conversation.
Rachel:
Because I think that's so important with all of us, right? Not only do you have to be a good communicator, but you also have to be a good listener. And how to teach individuals how to be good listeners is obviously teaching them how to ask questions.
Kristen Allison:
Yes, absolutely.
Rachel:
And we've got Bobby, who's also joining us and, "I have two boys with cerebral palsy and I'm also a speaker for cerebral palsy." Well, thank you so much, Bobby, for joining us. We've got people from Maryland, Chicago, who are joining us as well. It seems like sometimes we're having a little bit of broadcast interruption. So, I apologize if it's getting choppy for people, we are recording this as well, so we will post it separately after the fact. But if we want to dive then into talking about speech language pathologists and what they do in regards to supporting this communication to maximize participation, what is the role of a speech language pathologist in all of this?
Kristen Allison:
Yes. So, speech language pathologists, well, initially their job is to assess and treat speech and language impairments for kids, right? And as part of an evaluation that a child may have with an SLP, SLPs have a lot of tools and are really skilled at assessing the speech components and language components separately. So, they'll be able to tease apart whether the challenges your child's having with communication relate to the actual motor speech production aspects or language, or both. And then, I think most speech pathologists are really good at having the end goal in mind. So, I think that as a profession, speech pathologists understand that the ultimate goal is to maximize function, communication function, and to facilitate friendships and these social interactions that we've been talking about.
Kristen Allison:
But one thing that is a limitation for speech pathologists is that we don't have a lot of published tests or measures of participation right now, that clinicians commonly use. There are some measures that researchers use and that are incorporated into the survey study that I'm conducting and other people have been doing, but they're not commonly used by clinicians at this point. And so, I think that, that's something that's a really important conversation for parents to have with their child's therapist, because really parents are the experts on knowing what situations their child's having the most trouble communicating in.
Kristen Allison:
They are more aware than anybody else of how their child is able to navigate friendships, what kind of situations the child's getting left out of because of their troubles with communicating. And so, I think parents are a really crucial part of the team in terms of problem solving how to best approach therapy for kids, and should really work with the speech pathologist to communicate, "This is a problem I'm seeing my child have, how can you use your expertise to help me better support them in these situations?"
Rachel:
And I think that's this purpose of having common goals and being able to set these goals and how important they are. We've just got a little bit more a question. So, what other things can we do from a strategy perspective? Obviously, sometimes it can feel that pre-programmed language almost feels very formal. Is there fun ways that you can implement maybe favorite words or favorite sayings and things like that within any sort of communication, whether you're using an AAC or not? How you're teaching this back and forth communication doesn't have to be in a formal manner necessarily, kids like to have fun, it's really important as part of participation and obviously, making friends. What are some of your tips around making all of this fun for people?
Kristen Allison:
Oh yeah, absolutely. Well I think, taking this and dividing it up in terms of thinking about AAC users and then thinking about kids who are not AAC users, there may be two different answers here. So, for children who do use AAC devices, initially there often should be conversations between the parents and the speech pathologist who's programming the device about exactly that, "What are some common phrases your child says? What are some fun things you want them to be able to say easily?" And there should be a lot of conversation to develop a word bank and bank of phrases and vocabulary that are meaningful for the child, and fun for the child, and make them motivated to communicate and for them to feel empowered by the successful communication, when they can push something that says, "Hey, that's really cool," to their friend, right?
Kristen Allison:
So, I think that's a really important component of building vocabulary when you're working on programming an augmentative communication device for a child. For kids who are working on speech production and maximizing the clarity of their speech or language, you can sometimes ... For some children who have really reduced intelligibility, working on some of these really motivating phrases can be one way to focus therapy in a way that has the biggest bang for your buck in terms of intelligibility. So, what I mean by that is, there may be certain phrases, or names, or words that a child really wants to be able to say more clearly and they can't. And so, working specifically on that word or phrase can be really motivating for kids and really helpful to making them feel more successful about their communication.
Rachel:
And really important, right? Because as we said, developing those friendships, I think we're all known for sometimes common words that we say and little phrases that we all have. So, it's very much okay for kids to also learn to have a common phrase that they use all the time. They might start to be known for using that phrase, but it's actually something that is very friendly and a lot of fun and starts creating more of that social interaction.
Rachel:
You touched a little bit on parents and their role in all of this. Can you just have a little bit more about the important role of parents in all these conversations and also the important role of the child, or young adult, or whoever else might be involved in this? It really is about creating a team environment and having this ability to be able to all, I suppose, put expertise into the conversation.
Kristen Allison:
Yes. Yeah, I think that over the past several years, healthcare has moved a lot more in this direction, which I think is a really good thing, of really integrating the parent and child as a member of the team and taking their priorities into more consideration than maybe had been done a long time ago. But I think that it's really crucial to have buy-in from the family and the child. And the only way that therapy is going to be successful is if it's meaningful to the child and the family. Without that, you're working upstream. A lot of times, with kids with CP, there are multiple things going on at the same time. Kids have PT goals and OT goals and speech goals, and they may need some special education support. They may need some feeding support, or vision support. There could be multiple things going on, and for parents that can be very overwhelming because it feels like you can't address everything equally, all at the same time.
Kristen Allison:
And so, I think parents, when they're talking to each individual therapist, hopefully they're working with a coordinated team that's helping them prioritize things. But I think that, that's one area where parents have a really important role, is helping communicate what their biggest priorities are at that particular moment for their child. And children also, especially as they get a little bit older, should have a very strong voice in that as well. What is it for them, what do they feel like is the hardest barrier that they're facing? And how can their team help support them in overcoming that?
Rachel:
Yeah, absolutely. And I think, valuing that team and understanding everybody's place within that team is so important. And I love now that really as the medical field has shifted, as you said, to this place where it's not just a expert physician or clinician telling you what should be done, it's really this two-way piece. Pretty much just like communication in general, we are now actually having dialogue between families and patients and physicians, rather than just this one-way dialogue, which is amazing. I want to dive now into details of your research study because it's a really interesting research study that you're doing. And I think it's so important because you're actually trying to find out from individuals and families, what is going on, so we can actually improve clinical care.
Kristen Allison:
Yes, absolutely. So, this study involves a survey. And for those of you who may have already completed the survey, thank you so much. It was an overwhelming response to the Instagram post that Rachel put out and I was blown away by how many people participated, and appreciate that so much. So, it's a survey that asks questions about both aspects of the child's speech production and language skills, as well as different measures to capture aspects of the child's participation and how they participate in communication with different types of people, communication with peers, communication with family, as well as the different types of activities that children participate in.
Kristen Allison:
So, it's a broad ranging set of questions and really what our goals are, is one, to better understand how children who have these different types of communication profiles and kids who use AAC to communicate versus children who are verbal communicators, but may have reduced intelligibility, how their challenges to social participation differ. And so, if we can better understand that, then we can help SLPs better prioritize areas to address in treatment. And we can also give parents information that they can use to better help advocate for their child. So, if they know, that my child is a verbal communicator, but has some problems with their speech production and language, so they are at risk for these kinds of participation restrictions. And we can think earlier about how to better support children to try to hopefully overcome some of those restrictions and better facilitate their social interaction skills.
Rachel:
And I know we're trying to get a few more people to fill in the survey.
Kristen Allison:
Yes.
Rachel:
And we're really looking for obviously, parents, this is a parent survey. They fill it in for their children ages between four and 17 years. And what's the group that you're really looking at trying to fill? So we make sure you've got everybody's thoughts and opinions as part of this data.
Kristen Allison:
Right. Yes. Yeah. So, we've had the lots and lots of parents respond, whose children are verbal communicators, but we have had far fewer respondents whose children use augmentative communication as their primary mode of communication or who have children who are non-verbal. And so, we'd really like to get about 20 more participants who have a child that fits that communication category, so we can better understand participation for that group of kids.
Rachel:
And we'll be putting out a post and putting a link. So please, if your child uses an AAC device or they are nonverbal and use other means of communication, we would love to hear from you, because everybody's thoughts and opinions really matter in how we can move forward the field. We really want to hear from families about, what are your perspectives and what's your experience?
Kristen Allison:
Yes.
Rachel:
Now, I know obviously, your research, you've been fortunate enough to have it funded by the Cerebral Palsy Research Network. Do you just want to tell me a little bit about your role within the network and how that's working and helping within the research framework?
Kristen Allison:
Yes, absolutely. So, this survey project was funded by a grant from the Cerebral Palsy Research Network and Cerebral Palsy Now, together. So, they came up with a new grant funding mechanism, which I received to support this study. And so, since then I have become involved in some of the conversations among researchers as part of the Cerebral Palsy Research Network. And what it is, is it's a really important network of researchers who are working together across disciplines to try to improve of outcomes for children and adults with CP.
Kristen Allison:
And what they have developed is something called the My CP Registry. And for anybody who did the study, you would be directed to it at the end of the survey. But what it is, is it's an opportunity for families who are interested in contributing to more research studies, to have an opportunity to sign up, to be part of this community. And then, you can be notified about other research opportunities that you might be interested in participating in. And like you said, Rachel, it's so important to have input from families and individuals with CP, that is the critical perspective in understanding how to better support individuals with CP. And so, I encourage people to get involved in the My CP Registry and to participate in research as much as they're able.
Rachel:
Yeah. And I think, particularly with the My CP Registry, and anyone following us, it's for everybody, it's across the lifespan and absolutely young adults can be part of this registry as well. When you've seen us post about the pain study and we'll be posting some more of those too, it links through the My CP Registry, because it's really important sometimes to be able to collect data longitudinally. So, some of the surveys that you'll enter within My CP are a one-off and that's also really fabulous data, but some of the others you'll have opportunity to give your opinions and thoughts over time.
Rachel:
And to be able to collect that sort of data is just so important to be able to change practice, because at the end of the day, I think the goal of CPR and the goal of CPF and the goal of really all these researchers, is to improve care, is to improve outcomes for individuals and families. And so, I love the fact now that all of us are improving stakeholder participation in these conversations. And actually, seeing individuals with CP and their families as such an important part, it's not just about researchers and clinicians telling you what to do. You really have this opportunity to be like, "Oh no, hey, this is what works best."
Kristen Allison:
Mm-hmm (affirmative). Absolutely.
Rachel:
And we are just looking, and we've had a lot of different people commenting and sharing their stories. And I do apologize again, if there has been a breakup within the broadcast, but we will absolutely be posting this again for you all to see. Is there anything else that you want to cover before we finish up? Kristen, I just want to say thank you again for spending so much time with us today and sharing all your insights, the work that you are doing through the SMILe Lab is amazing. And we will be making sure we share, obviously, your Facebook page. Anyone watching, please go follow SMILe Lab as well. We will also be posting about the survey. So please, if you get an opportunity, go take that survey. Particularly, if you are a parent of a child who uses AAC or who is nonverbal between the ages of four and 17.
Kristen Allison:
Yes. Thank you so much, Rachel, this has been great to talk with you, and I look forward to being able to share the findings of this study with the CPF community.
Rachel:
Amazing. All right, everybody, thank you so much for joining us and we will see you next week.
Kristen Allison:
All right. Bye-bye.
Rachel:
All right. Bye.