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00:11 Tiffany: Welcome to See Hear Speak Podcast Episode 31. In this Episode I speak with Jenya Iuzzini-Seigel about childhood apraxia of speech, often referred to as CAS. If you haven’t heard of CAS, you don’t want to miss this one. And if you have heard of CAS, I’m certain you’ll learn something new.
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01:01 Tiffany: Welcome to SeeHearSpeak episode 31. Today, I have Jenya Iuzzini-Seigel, and she is here to talk about Childhood Apraxia of Speech. I will start by having her introduce herself.
01:14 JI: Hi! I'm so happy to be here with you. So, I'm Jenya Iuzzini-Seigel, as you really nailed that pronunciation, by the way, thank you.
01:22 Tiffany: [chuckle] I've been practicing.
01:23 JI: I feel like everyone's nervous to say it. I'm an Assistant Professor at Marquette University, and I'm a speech pathologist. I study diagnosis and treatment of Childhood Apraxia of Speech and other speech sound disorders. And I look for mechanisms that mediate symptom presentation and response to treatment in these populations, and comorbidity, and all different kinds of things like that.
01:50 Tiffany: That's fantastic. So, let's also tell the listeners in full disclosure, that we are friends and we've known each other for quite some time. How did we meet?
01:59 JI: Yes. Yes.
02:00 Tiffany: How did we meet? Remind me, like I know it was through Jordan Green.
02:04 JI: So yeah, through Jordan Green. So, when I came to Nebraska to start my postdoc with him, then you were there. You were working with him. So, I went to... I had studied for my Master's and PhD at Indiana University, and then I went to do a postdoc in Nebraska, and we were starting up a lab, I guess, or you guys had started up a lab in Omaha already, at the Munroe-Meyer building there with Yohan MC. And I went to go sort of be the CAS arm of your team, right? You guys were learning about the language and the motor, and I was gonna know about CAS. And it was really exciting. And so then we got to working on some projects there, and then when we all relocated in our weird reality show type "let's move an entire lab to Massachusetts", I got to go with you both. And then I got to study more with you as well. So, then I kinda was doing a joint postdoc with you.
03:08 Tiffany: Oh, that was such a crazy time, right? Because we had... It was really two labs, right? So, there was Jordan's lab and my lab.
03:13 JI: Yes, yes.
03:15 Tiffany: And you were working with both of us...
03:16 JI: Correct, yeah.
03:17 Tiffany: And then there were ten of us, I think, that came, together.
03:19 JI: It was really so odd. And we just moved to Boston.
03:23 Tiffany: Yeah, it was like... Yeah, we...
03:24 JI: All these people. Started it up. I mean it was... I just remember seeing everybody in Boston for the first time, and it was just so crazy. But really fun, and we learned a lot and I learned a lot. It was great.
03:35 Tiffany: What a bonding experience.
03:36 JI: Yeah.
03:37 Tiffany: It was like learn how... You were learning about CAS. You already knew a lot, but you were learning about the motor aspects and the language. And then you got to learn how like... Move with the whole lab and restart a whole lab.
03:47 JI: Oh my gosh, I know. I know.
03:49 Tiffany: Right from scratch.
03:50 JI: Yes. Yes.
03:51 Tiffany: It was really crazy. But that was a really fun time. And no one now... I don't think anyone's left in Boston, that was here in the original... We should call ourselves the Original 10 or something. And I don't think anyone's left. Oh, Meg is here. Meg Simione.
04:03 JI: Oh, Meg Simione. Yeah she's still there.
04:05 Tiffany: But she's not here at the lab, so no one's left in the lab.
04:07 JI: Right, right. Just you and Jordan.
04:08 Tiffany: Yeah, just us. And so, yeah, just us, just the parents, just the parents are left.
04:12 Tiffany: The children have left.
04:15 JI: But you're hardly empty nesters, because you've got plenty of more fresh, smart people working with you.
04:19 Tiffany: Never. We just keep bringing them on. Keep bringing them on.
04:22 JI: Exactly, it's great.
04:24 Tiffany: So in this podcast, I have a variety of listeners. I have a lot of educators and speech language pathologists and parents. But I want you to start by describing what is CAS, and how is it typically diagnosed and what are some of the treatment approaches that are used for Childhood Apraxia of Speech.
04:43 JI: Yes, these are big questions, Tiffany, big questions.
04:45 Tiffany: Right, I know. Start out big.
04:47 JI: Yeah, so Childhood Apraxia of Speech is a neurological speech sound disorder. It makes it difficult for children to learn how to speak. It affects the precision and the consistency of speech sound movements, and it's in the absence of neuromuscular deficits. So what this means is, neuromuscular deficits could be abnormal reflexes or tone, and those are associated with a different speech disorder, called Dysarthria, that can oftentimes cause like weakness and things like that. So that is not the issue or the core deficits in children with Childhood Apraxia of Speech. These kids know what they wanna say, but they have difficulty planning the complex sequences that are needed to produce speech. So, it's just really a challenging disorder and it results in speech sound errors and difficulty with co-articulation going from one sound to the next, and one word to the next. It can really disrupt prosody, so the rhythm of speech, the melody of speech, and it can be very difficult to treat, as well.
05:51 JI: So unfortunately, these children tend to have a really poor response to treatment. Even evidence-based treatments for kids with other types of disorders like phonological disorders, there's a huge number of treatments that work and work fairly quickly for children in that population. And unfortunately, these things do not work for children with CAS. We really need to do different kinds of treatments, kind of specific other types of treatments that I'll describe to get remediation. But the treatment needs to be very intense, very frequent. So instead of a child coming to see their speech pathologist for 30 minutes once a week or something like that, kids with CAS tend to need treatment like three times a week or more even. And they just need so many productions. We aim for minimum of 100, 200 productions per treatment session with them, so that is a lot of practice that these kids really need to start to make progress. Yeah.
06:55 Tiffany: This disorder falls under a umbrella of speech sound disorders, but how is it different? You mentioned the phonological disorder, so how is it different than a phonological disorder?
07:04 JI: So, we really see different symptoms. It's very interesting. So, children with phonological disorders have patterns that they typically would display. So maybe they show these phonological processes like fronting, where their velar sounds are produced as alveolar sounds. A K would be produced as a T, something like that. And because of those patterns, children with phonological disorders tend to be decently easy to understand, because you can cue into those patterns and get what the child is saying, because our brains are really good at figuring out patterns. But children with CAS are really inconsistent in the productions that they make. So, you might have a child say the word elephant three times and it would come out differently each time. And it could be a little different each time, or it could be drastically different each time. And it sort of just depends on the child and the severity and things like that.
07:55 JI: They also sound different in terms of their porosity, like I said. So, one of the typical things that is described is that they might sound a little robotic, a little staccato in the way that they sound, or their stress patterns may be different. They may neutralize stress, so if you're supposed to say a word like... Or even a name, anything where there's different stress, weak, strong, they might say both with equal stress, both syllables. So, they also make vowel distortions, they make voicing distortions, and so all of these things together make them really unintelligible a lot of times. And again, it's a lot to treat and it's difficult to treat, and that sort of is the gist of what the speech piece of it is like. And then there's also these comorbidities.
08:49 JI: So in addition to having speech deficits, unfortunately these children also tend to have a lot of other things that come along with it. So, they might also have oral apraxia. They may also have language disorder, which we'll talk more about. Literacy disorders. They may also have fine and gross motor deficits. So, I just really... This population just has my whole heart, because I think that it is really challenging for children with CAS to work through this and be able to overcome it. And it's challenging for parents, too. That's a lot to work with for your child. It's a lot to grieve, I think, when parents have children with multiple deficits like that. It's a lot for teachers to learn to navigate, so that we can help children to be their best selves and really get what they need to progress in every way.
09:45 Tiffany: What's the prevalence of CAS?
09:48 JI: It is one to two children per thousand. A recent study they redid, a prevalence study, and they found it was more like one child per 1000, but I'm gonna say one to two children per thousand. And it's rare, but it's not that rare. Because what that boils down to is about one child per elementary school. So, speech pathologists are seeing these children; it's not so uncommon that you would never see it, but it's uncommon enough that you might really not feel confident in how to make that differential diagnosis and how to do that treatment. So, I think one of the things that I think is great is that there's really becoming so much more awareness about apraxia. And in so many different ways. So, of course, you can go to ASHA and hear a presentation about it. But now, I just recently realized the world of Instagram exists, and I'm seeing amazing people, clinicians, parents, who... people with CAS, who have these Instagram followings, and they are sharing just excellent information, research-based information, which of course is wonderful and exciting, excellent clinical expertise. So that information is becoming so available to help parents and SLPs and researchers just feel more comfortable with what CAS is and what it can do.
11:13 Tiffany: And you can shout out because you have a new Instagram, new-ish Instagram page, and you're sharing some amazing information.
11:18 JI: Thank you. Thank you.
11:19 Tiffany: So, I wanna turn the listeners onto that, and I'll put that in the resource section.
11:22 JI: Yeah. Awesome.
11:24 Tiffany: How did you get interested in CAS initially?
11:26 JI: So, when I was doing my doctoral work with Karen Forrest at Indiana, she was working with that population. And I started working with her and it just seemed like, Wow, this is really so interesting. And I started doing my dissertation work and we were looking at inconsistency, which is one of the core defining features of CAS. We were looking at inconsistency and sort of what other kinds of symptoms went along with inconsistency. And so I was looking at vowels and doing some acoustic analysis to look at vowels, and also at voicing errors. So, children with CAS, a lot of times, instead of saying voiceless plosives, they'll say voiced instead. Which is interesting if you think about... You have three kids, so when they were infants, you might have remembered them saying a lot of Bs instead of Ps at the beginning, and Ms and things like that. So, they're doing a lot of voiced consonants in the beginning, that's just developmental.
12:25 JI: And then you start to differentiate, and you are doing your Bs and also your Ps. Sammy is still in the B stage. A lot of Bs, a lot of... All the B words. So, it starts to differentiate, and what we were seeing is that kids with CAS just really are not great at doing that differentiation. They have a lot of overlap in their voiced and voiceless plosives, which was interesting. And you really hear that perceptually when you give children with CAS a speech test of any sort and any kind of assessment, you'll hear a lot of... Oftentimes, a lot of those voiced consonants instead of voiceless.
13:04 JI: So anyway, so we started to look at that and I just thought it was so interesting, and I remember one of the things that I saw in my dissertation work was that... I think we looked at like 20 children or something with CAS. And they had, in addition to the voicing, the vowels, the majority of them really had a hard time on the word structure portion of the self. And I was like, it's not just a speech deficit? There's really language problems with this, too? And the research has always reported, Oh yeah, there's this disconnect where they have good receptive language and poor expressive language. And I think sometimes people have reported that that's due to the speech deficit. They can't do S, and so they're not gonna have possessive S or something, or plurals. But it's much more than that. It was like really... They had sort of like certain pronoun categories but not others, or... It was just really interesting to see how that kind of manifested. That was something that I was so excited of when I started to work with you. I was like, let's dig into this a little bit more. It's certainly really interesting and something that I knew that you would be able to appreciate, for sure.
14:12 Tiffany: Yeah, It is kind of cool because I think our connection has been so enriching that way, too, because I've always been interested in speech sound disorders and the connection with language and literacy, but hadn't done as much with apraxia. So, when you came in, it was really a nice addition to think about what apraxia is like. And then I definitely have been interested in the apraxia type errors because we actually see those similar errors in children with dyslexia, but they don't have the diagnosis of apraxia. And I know we looked at that a bit. We had a small sample, so I don't think we ever quite got our resolution, but I know that's something that you're interested in studying in the future, too...
14:51 JI: Yes, for sure.
14:53 Tiffany: Is thinking more... Because it's not that all children with apraxia necessarily go on to have dyslexia, but they definitely tend to have literacy problems and you can imagine why. And it's also interesting cause children with dyslexia don't always have a speech sound disorder, whether it is phonological or apraxia. But it almost seems like they have similar overlap.
15:11 Tiffany: And I remember when I first started working with you, and I had heard Lisa Goffman present, which I know you've worked with her, too. And she studies the intersect between speech and language. And I've had so many students ask me why isn't there more people studying the intersection? Because like you said, most of these kids have these comorbidities. But Lisa's presentation highlighted how it's really about people and how they kind of approach their science. So, she showed a model of speech sound production and motor speech, that had this all complicated model about all the speech aspect and had a tiny box for language, and then she showed a model of language, that all these complicated parts of language and a tiny model for... A tiny box for speech. And people that study both are pretty rare, that intersect. And it's more just because we kind of tend... As PhDs, we kinda dig into one area. So, I think the work you're doing is just so needed to think about the child as a whole. Can you tell me more about how you've thought of the child as a whole and how that's driven your research?
16:16 JI: Yeah, so one of the interesting things was, I remember when I was collecting data in Nebraska, and I had this particularly rambunctious eight-year-old that we were evaluating. And he was just getting really antsy, and so I said, "You know what? Let's stop for a minute. Why don't you do 10 jumping jacks for me." And his mom was sitting across the table and he started to do these jumping jacks. And they were so dis-coordinated. And his mom looked at me, like, Can you believe this? And I thought, Wow, this is really interesting. And so I just started to be thinking, I wonder what the fine and gross motor piece is that's affecting these children as well.
16:56 JI: And I think around that time, I went to Apraxia Kids, it was called CASANA at that time. And I went to a conference that they were hosting maybe or we did a symposium or something, and Sharon Gretz, who was the head of CASANA at that time gave a talk, and she said 50% of the kids with CAS that they were seeing and learning about through their databases and things like that, that 50% of them were reported to have fine and gross motor impairments. So I thought, Wow, that's really interesting. So, I knew I wanted to dig into that more. And this past year, we put out a paper looking at motor performance in children with CAS, with language impairments, without language impairments, and kids with speech sound disorders, again with and without language impairments, and typically developing children, as well.
17:45 JI: And it was really so interesting. We ended up finding that the majority of children with CAS really had pretty significant motor impairments, but... I mean, so significant that they were performing in this red zone on the movement ABC test that we gave. And this is a test that looks at balance and manual dexterity, so threading a lace through a card with holes in it, or putting beads on a lace, things like that. Aiming and catching, where they're catching balls, throwing balls and beanbags and things like that, and then balance where they're doing different kinds of balance tasks.
18:27 JI: Anyway, what we found was that the majority of children with CAS scored in this red zone of having major motor difficulty that would probably require treatment according to the manual. So, we also do a case history whenever we bring kids into the lab. And the majority of parents in the CAS group did say, "Yes... " They didn't even know what we were investigating, really; they know they're coming in to get an assessment. But they did say, "Yes, my child, I believe, does have motor deficits. No, my child has not had a PT or OT eval or treatment." So, I'm just like, why is there this disconnect? The parent is concerned, the child has significant motor deficits, that they are really having difficulty with this, but yet they're not getting the appropriate assessments.
19:14 JI: Why are they not even getting screened for it or something? And so that's something that I'm gonna really be digging into in the future, but I think that it really has something to do with the fact that maybe they're meeting the milestones, but the quality is really poor. And I know even from my own son who was delayed, that we went to the pediatrician for his 10-month appointment, and he was still not rolling both ways. He could sit. But he wasn't rolling. And so I said to the pediatrician who I adore, this pediatrician, I said, "What do you think? Should he have a PT eval?" And our pediatrician said, "Well, if you want one, yeah, you can have it, but I don't... He doesn't need it. He'll probably be fine. We can just wait and see."
19:58 JI: And I was like, I don't wanna wait and see anymore, I've waited 10 months, he's supposed to be rolling at four months, apparently. Four to six months. And he's like, just laying there. And I know that they need to be moving to explore their surroundings, so his surroundings were like, whatever we brought to him, but he wasn't motivated or able physically to do these other things and roll and walk and all these other things. So, we did bring him for PT, and the PT was like, " my gosh, he's on a three-month level on some things." So, she was so happy we brought him in and pretty quickly, we were able to get him to be rolling and then crawling and things like that, he's not quite walking yet, but he seems like he's getting ready to do that. And I heard Kerry Ebert is a clinical expert in apraxia and autism. And she does a lot of presentations, and I've been following her Instagram. And she posted something that really resonated with me recently. She said, "How about instead of, 'Let's wait and see. We just see.'"
20:57 Tiffany: Yeah, exactly.
20:58 JI: And I thought, yes. Absolutely. Let's just see. What's it gonna hurt? Right?
21:04 Tiffany: Absolutely.
21:05 JI: That happens is somebody says, "No, they're fine." You don't need this...
20:08 Tiffany: Right. No, I think that's a great example. And I like how your research... And I try to do this, too. It's hard, but to think about the whole child. Because as a clinician, what struck me, is that you go through graduate school and you take a class in each disorder. So, you take a speech sound disorder class, a language disorder class. Maybe if you're lucky, you have an interdisciplinary program and you learn about what an OT does in PT, and those things, but then when you... So you have these silos of learning and they may mention, "Oh, there are some comorbidities or some comorbidities," but then as a clinician when I went out, I was hit right front and center with one child in front of me that had multiple deficits. And I'm thinking to myself, "How do I manage this?" Because I was taught in a way that created like a silo. Here's the evidence base for speech sound. Here is the evidence base for language. And how do we know overall, the whole child and what they're gonna experience. So, it seems to me your work has such practical implications, because you're a speech pathologist who has a child with apraxia. You should be thinking, "What about these other problems and how can we treat the whole child?"
22:12 JI: Yes, because what I really think about with this population is we have a child who already is having so much difficulty communicating. That is difficult enough. That is alienating enough for them. They're trying to communicate with other children, with their teachers, with family, everyone, they're having trouble with that. Then they also have these motor deficits. What is their experience gonna be like in the world? What is their experience gonna be like at recess? Now they can't be super athletic because of this, maybe, they are having trouble even ambulating sometimes or playing ball. How much can these poor kids take? It's really... The social implications are really challenging, and it just really... It pulls my heart strings so hard.
22:56 Tiffany: And there's so much parent stress as you mentioned. You've done so much advocacy. And you mentioned CASANA. Can you tell about some of that advocacy? You've done that since I've known you. You've been so active in advocacy for these children.
23:07 JI: So right now I'm on the pack for apraxia kids, the professional advisory committee or council, and we really look into a lot of things, so we're trying to keep the research on their website up-to-date, and they put out grants to support research, they put out a lot of content for parents, they put out webinars, so it's really interesting to be involved in all these different aspects. They have Facebook groups that are really a great support. And then they've got experts like Ruth, I'm gonna say her last name wrong, Stoeckel, from Mayo Clinic. She'll write in when parents write with questions, she'll often be one of the people to respond to them, which is so helpful to have just really educated people to be responding so that parents know they're getting appropriate and accurate content.
24:04 JI: They really do try and support families to find answers to things and feel supportive, but also they do a good job of really only allowing evidence-based information up on their Facebook group, so if a parent asks questions about like, "Oh, I wanna give my child supplements that are gonna make them not have difficulty speaking anymore," that that conversation is steered towards, there's really not evidence at this point to support the use of any of these things, and you can ask your doctor about it, but there is not evidence showing that this is going to actually improve your child's speech. So, I think that's really good. CASANA does or Apraxia Kids does these walks every year, and that supports their different programming and also the research grants that they do put out, and I've had research funded by them before, which is great. So, it's just excellent. It's just really excellent. Right now, they're actually doing a virtual conference. They were supposed to be having this amazing conference right now. And unfortunately, it's gone virtual, but that kinda makes it more accessible for everybody. I'm liking all the virtual stuff that's up as a result of this COVID 19, I think it's obviously terrible in a million ways, but also there are some positives, I think, coming out of it. And accessibility of information, I think is one of them, right?
25:25 Tiffany: It really highlights how important it is with these parent groups, all these things that are happening with this parent group, or Apraxia Kids, it's amazing, but the first step is for SLPs to feel empowered enough to send a parent to this group so the parents even heard of apraxia. Because the parent has to find it somehow right? So, it seems to me like it's so important for speech pathologists to have the knowledge around apraxia of speech even if they aren't seeing as many kids on their case load, because I'm curious how parents even find this organization.
25:59 JI: It's interesting, I think a lot of times, this is unfortunate, but a lot of times, because pediatricians do not necessarily make the referrals in a super timely fashion, there end up being like three-year-old’s, two-year-old’s, three-year-old’s who are really not speaking, and the parents are Googling. And I see them write in to the Facebook group saying, I don't know if my kid has this, but I kind of wonder about it. Or maybe an SLP has mentioned it in passing, and there's really different ideas about when and how CAS should be diagnosed. ASHA had recommended age three. And I know that there is some pushback on that saying three is not a magic number, and it's not a magic number. I would agree with that.
26:47 JI: I think the reason why we say age three is because that's when we would expect a typically developing child to have enough speech to do a differential diagnosis. And maybe not a typically developing child, even, a lot of them have it by age two, certainly, but we wanna have a child to have enough speech that they can participate in a speech assessment. And we wanna make sure that certain things like inconsistency is expected in a typically developing child to really be minimal by the age of three when they're speaking at that point. The simple words, anyway. Whereas a child with apraxia really continues to have a really high level of inconsistency. So, we need certain things that happen during typical development, we need them to sort of stabilize so that we can differentiate normal variability that we see at younger ages, from inconsistency that we see sort of persist in children with CAS at older ages.
27:48 Tiffany: I remember as a clinician feeling quite nervous initially on any type of diagnosis like that, and I noticed that the more education I got on a certain topic, the more confident I would feel.
28:00 JI: Sure.
28:01 Tiffany: But I also think it's tricky because especially with speech sound disorder, I think there can be some morphing that occurs along the way. Like a child can have apraxia of speech and then it's not necessarily that they don't continue to have apraxia of speech, but they could... It could turn more into an artic problem... Maybe they have...
28:18 JI: That it looks like it. Yes.
28:20 Tiffany: Right. So, it's tricky, right? Cause it morphs into...
28:22 JI: That's... Yeah, so the sort of the appearance of it, right?
28:25 Tiffany: Right.
28:26 JI: And the other thing is that you can have CAS with a phonological disorder. It does not... Certainly does not preclude these other things, so a lot of times when you do treat a child with CAS as they become more stable, more consistent, then you can start to see these patterns emerge that are phonological. And so it sort of is like it's not that the CAS has gone away and you kind of still need a lot of times to use the principles, the motor principles to guide your treatment, even if the child is looking more phonological, but you might be able to pick your targets differently or something like that. I like to sort of do a mixed approach anyway, just to sort of head it off at the pass. I'll pick phonological targets and treat them using a motor approach. So that I can sort of have the best of both worlds, and I think you really can't... I think that's if you're not sure, then I think that's also a good way to go, because if you are treating a kid with CAS and you don't use those principles of motor learning, and you don't do a motor-based approach, you're likely to not see progress, but a child with phonological disorder, if you do this combined approach, I think you'll still oftentimes see good progress. That's what I would expect.
29:44 Tiffany: Yeah, that makes a lot of sense. I think that does. It is interesting too to think about why there are parent support groups for some deficits and not others, so apraxia kids has been around and was in the form of CASANA before. And has been really strong for quite some time, and International Dyslexia Association, very strong. We didn't have anything for DLD, and now that's really emerging.
30:07 JI: Yeah, I saw that recently yeah. That's cool.
30:09 Tiffany: Yeah so that's moving, but we don't really have the speech sound disorder either, so if you have a broader umbrella term of speech sound disorder. Right? That was, am I missing something?
30:16 JI: Well, you know what, there are Facebook groups that have... But it's interesting, a lot of the families writing in, I do wonder like, "Oh, I wonder if this kid actually does have apraxia because of what they're sort of describing," and sometimes they will say, "My kid does have apraxia and I think it's interesting that they're in that group versus the apraxia group," but I think you have to find where you're comfortable. One of the things that I feel is unfortunate is that because even though apraxia has been around for a long time, it's not been around for that long of a time in terms of us really knowing how to diagnose it well and knowing what kind of treatments might work for it and things like that. And when parents get this diagnosis, a lot of times I feel like they really feel that it is practically a death sentence for their child. And that is so crushing. So, I wish that wouldn't be the case. As a researcher, I wanna do the work and help these children because I don't want parents to feel that way about their child.
31:22 JI: I want them to have pride in their child and joy from their child. And I don't want them to feel this weight when they get a diagnosis like this, that their child's life is gonna be terrible. There's this really inspirational young man. His name is Jordan Christian, and I found him through this woman Laura Smith who's an SLP. She goes by her handle that she uses on Facebook and Instagram and stuff is SLP Mommy of Apraxia. She has a child with apraxia. Anyway, this young man is 23 years old or so, he's in college, he's about to finish up, and he has apraxia. He had a CAS diagnosis. And he continues to have residual speech effects. So, when you hear him, you know that he has apraxia. It still sounds like that, but he's quite successful. And he's probably got, I don't know, 10,000, 15,000 followers on these different forums, and he's constantly putting out content. And it's just really inspirational.
32:21 JI: So that's who I want parents to hear about, because I think that then they'll know, you know what? It's very likely if your child has apraxia and it doesn't have another major piece, like a pretty significant cognitive impairment or something like the speech piece, and even the speech and language piece together, like your child could still be just fine. And I want parents to feel that way because that's an exciting feeling to have, right, that you have this faith in your child that they're gonna grow up and really be okay.
32:56 Tiffany: Right, and it can be crushing.
32:56 JI: That means different things, obviously, right? It means different things. But...
33:01 Tiffany: Right. But I think also, yeah, I think you're highlighting one of the biggest important aspects of these parent groups is that support to see these models, so they can see this young man who shows success and they can have some models. And the other thing I see a lot, and I saw this with speech sound disorder too, is just the feeling of guilt that parents have like, Oh I caused this.
33:19 JI: Absolutely. Yes.
33:22 Tiffany: Whereas when they get in, the more they know about the evidence, the more they can realize, I didn't cause... You didn't cause this. This is a neuro-biological. And you said that right up front, so I think that's also a really critical part. One thing, and speaking of Instagram, I wanted to ask you to talk to the audience about this buy Bobby a puppy phenomenon that's occurring.
33:41 JI: Oh my gosh this is so amazing.
33:43 Tiffany: Tell me all about it, cause I know all about Bobby. [chuckle]
33:46 JI: Alright. Yeah. Okay, so we started using the sentence in the lab during my post doc, because it's a sentence that's really good if you're collecting kinematic data, so when you put sensors on the lips and chin and things like that, you can use a sentence like buy Bobby a puppy and see the lips move apart for those nice... Move together for the bilabials and move apart for the vowels, and it's different kinds of vowels, so it's this great sentence to use for kinematics, but we have the child produce it a number of times when we're doing kinematic research. And as a result, we have this nice little extra speech sample that we were collecting. And we started to analyze that in terms of inconsistency, cause I was just like, "Let's just analyze everything in terms of inconsistency." And we ended up finding this really cool finding that children with CAS really have a hard time with it, but the children with speech sound disorders are really... Or phonological disorders, and artic disorders are really decent at it, so they might not produce it correctly, but they will produce it consistently.
34:50 JI: Children with CAS oftentimes have difficulty producing it consistently. And really, like if you have them say it five times and they do it differently even one time, that is enough to say, "This is a major red flag for CAS." And if they have phonological disorder, again, it may be incorrect, but it will likely be consistent. I did a little tutorial on Instagram, and I had all these SLPs and parents writing in to me and sending me videos, even, some of kids and some even of adults with residual CAS effects, showing that it is difficult. And it was so interesting, even having adults do it, who are like trying as hard as they can to say it consistently correctly, and they just really had a hard time with it, so I think we're gonna put up the buy Bobby a puppy challenge to see more instances and just see how robust this is. It was quite robust in our study, so far, everyone that's sent me a sample or SLPs have written in about it, were like, "Wow, I tried it in a child who had a super severe phonological disorder and he did it fine." And so...
36:07 Tiffany: Wow. That's great.
36:08 JI: That's a big piece when you're trying to do differential diagnostic assessments, you wanna find something that's gonna be really difficult for one population and really easy enough for every other population, so that it's gonna be sensitive and specific in differentiating those different disorders.
36:27 Tiffany: And it really does make sense when you take a look at the sounds in the word that like you said, even a child with severe phonological delay, the Bs... The Bs and the...
36:36 JI: The Bs and the Ps, it should be fine.
36:36 Tiffany: The B sound and Ps and the vowels aren't as problematic so you imagine that that would be why you would see...
36:43 JI: Right. But it's again, it's taxing that voicing cognates, it's taxing those different vowels, and so that's exactly what children with CAS have difficulty with. And we see syllable segregation where it becomes really choppy or they have difficulty maintaining a prosody. It is just like really eye-opening. Really eye-opening.
37:04 Tiffany: Wow. That's fascinating. That's very cool. And that also shows the power of social media now to get out the evidence-based, right, cause this isn't something you made up, this is a study you did, it's very clear evidence so that's really interesting.
37:14 JI: Yes. Correct. Yeah. It's really interesting.
37:17 Tiffany: That's very cool. Okay, so now I'm thinking about our time, and I always ask every guest two questions at the end of the podcast. And so the first one I wanna ask you is, "What are you working on now that you're most excited about?"
37:33 JI: So I'm probably most excited about my procedural learning research that I'm doing now, so as we've been talking about... I'm interested in this comorbidity, looking at speech, looking at language, looking at fine and gross motor in children with CAS and other disorders. Well, what is tying all these things together? That is my question. So, I think it's really intuitive to be like, Oh yeah, a kid who has CAS would have difficulty with motor stuff because it's all motor. Or a kid with CAS would have difficulty with language because speech and language really intersect and interact. But why do they have all of these things? And so one of the things that I started looking at is procedural learning deficits. And procedural learning is the system by which we implicitly learn patterns. And these patterns could be in motor skills, these patterns can be in learning grammatical rules or learning speech sounds. And so there are other models, like Nicolson and Fawcett had put together these models looking at other populations that have these motor and cognitive linguistic deficits. Children with dyslexia, children with SLI or Specific Language Impairment, children even with ADHD.
38:51 JI: We see these kind of intersections, and so we started to think like, Could this be sort of a missing piece for kids with CAS? Could this be something that can explain why they have difficulty in these different seemingly divergent areas? And we are finding that, yes, kids with CAS, and particularly kids with CAS and language impairments do have poor procedural learning. And so it's like this real interesting convergence. So, I'm excited to continue to look at this. And actually, Maria Grigos, who also researches CAS and kinematics and things like that, she is based out of NYU now, and she and I are thinking of putting together an app that can actually measure procedural learning so that parents can be looking at this at home.
39:43 Tiffany: Awesome.
39:43 JI: And then we could just take the data and say, "You know what? Your child really kind of requires this number of exposures to a sequence to learn it." Or if your child has exposure to the sequence Monday, Wednesday, Friday, they are able to retain it, but if it's like Tuesday, Thursday, by the following Tuesday, like they're not retaining it well anymore, and that could really help us to learn about treatment scheduling.
40:08 Tiffany: Wow, that's cool. That's amazing.
40:09 JI: Cause we're gonna... You wouldn't want a kid to be in treatment twice a week, if three times a week would make a huge difference.
40:13 Tiffany: That's great.
40:15 JI: Yeah.
40:16 Tiffany: Oh, that is very exciting. I can't... I know you've talked about procedural learning for some time, and I'm so excited to see that research come out.
40:21 JI: Yeah. So I'm working on that paper now so that I'll hopefully, get it submitted this summer and.
40:26 Tiffany: Wow, that's great. That's great.
40:27 JI: Yes.
40:28 Tiffany: Well, we're gonna have lots of resources on the SeeHearSpeak Podcast page that everyone can take a look at, and you're doing some speaking engagements this week, you said, so you have... What do you have coming up?
40:40 JI: Yeah, so right now, we have Apraxia Kids, like I was saying, is doing a virtual conference and that's all free, and that content is up now, and it will be up through August 8th, so log on, there is so much content on there right now by SLPs, by psychologist, parents, I mean, everybody, researchers, so that's cool. And then also, we have ASHA Connect has some presentations up now as well, tons of presentations, and so on, healthcare connect, I'm giving some talks on assessment and treatment, so talking about some dynamic assessment that's needed for kids with CAS and that full breadth of assessment that we would wanna do and then different kinds of treatments that are effective in this population as well, and that stuff is up until July 20th.
41:30 Tiffany: Oh, that's great.
41:31 JI: So just one more week for that and that is... That conference does have a fee, but it's tons of content. You can get your CEUs from the comfort of your own home.
41:37 Tiffany: Yes, that's the best part, isn't it? I know.
41:39 JI: I know, yeah.
41:40 Tiffany: I know. Well, I'm really hoping that talking to you will wet the appetite of the listeners to look more into CAS for those of you who have never heard of CAS, it will turn you on to that content and have that as another tool in your tool kit of what a child could be struggling with, and an SLP feeling, maybe wanting to go get more research, they can feel more confident.
42:03 JI: Yes.
42:04 Tiffany: But I don't wanna forget to ask you the very last question, and that is, what is your favorite book from childhood or now?
42:12 JI: Yes. Okay, well, I'll tell you one of each, so my favorite one from childhood was Where the Sidewalk Ends.
42:20 Tiffany: Oh, yes. That's so fun.
42:21 JI: Yes. By Shel Silverstein. I... Like, the binding is falling off of that book in my parents’ house, from how many times I had read that. And then for now, my favorite children's book, I think is The Ear Book. The family really likes that. It's by Al Perkins. It's like a Dr. Seuss kind of... You'll love all that.
42:38 Tiffany: Oh, that's great.
42:40 JI: But my favorite adult book is Option B by Sheryl Sandberg.
42:43 Tiffany: Oh yes, oh yeah.
42:46 JI: And that really sooths me. And I feel like at this time, people need to know about Option B because Option A is available to no one right now in this time of pandemic, and I think it just really helps you to get over Option A and embrace whatever option B is gonna be, or C or D at this point.
43:04 Tiffany: Right. And that book... Tell the listeners that might not know what that book is about.
43:09 JI: Yeah, so Sheryl Sandberg wrote that after her husband died, very suddenly, running on a treadmill while they were on vacation, and she was... I just remember this really vividly from reading the book, but she was talking with a friend, I think there was a father-daughter dance or something, and she was saying, "I don't want my daughter to go with this other guy, I want her to go with my husband." And the friend said option A is not available, so. Oh, it just makes me emotional every time.
43:42 Tiffany: I know, me too thinking about it.
43:44 JI: So, really kick the shit out of Option B.
43:47 Tiffany: I love that. Oh yes.
43:48 JI: And it's really like, that's just how you have to approach it, because we've been through things in our lives, and you gotta just figure out what that option B is and move forward and think about post-traumatic growth, and I think this is like the past several months with the pandemic with the police killings of black individuals. I think we need to be very mindful of really post-traumatic growth, there's a lot of trauma happening right now for people, and we gotta think about how we can do better, and move forward.
44:25 Tiffany: I think that's so important. I think that's great. I'm glad to give a shout out, it's so important right now, as you mentioned, for so many reasons.
44:31 JI: Yes.
44:32 Tiffany: And I think that people are looking for resources to help through these kinds of things, and that is a great option.
44:40 JI: Yeah.
44:41 Tiffany: Yeah. Thank you for that.
44:42 JI: Sure.
44:43 Tiffany: So I just wanna thank you for your time. I know this is, as you mentioned, a really tricky time right now.
44:50 JI: No it's been great.
44:51 Tiffany: So I really appreciate you spending the time talking to the listeners and it's always a pleasure to see what's going on with the original 10 and... What everyone's up to and...
45:02 JI: I love it. [chuckle]
45:03 Tiffany: And I just so appreciate it. That's what we need to call it, The Original 10.
45:06 JI: Exactly.
45:07 Tiffany: But I appreciate your time so much.
45:07 JI: So funny.
45:09 Tiffany: And thank you for all you're doing on social media, getting the research out there, that's a whole ‘nother skill set...
45:13 JI: For sure, oh my gosh it's super fun though.
45:15 Tiffany: And you've always been so good at that, and inspired me in that way too...
45:17 JI: Oh, thank you.
45:18 Tiffany: So, thank you so much.
45:20 JI: Aw, thank you. Well, thanks for doing this. This is really fun. Yeah, anyone can hit me up if they have any questions about Apraxia, please reach out it'd be great.
45:32 Tiffany: Check out www.seehearspeakpodcast.com for helpful resources associated with this podcast including, for example, the podcast transcript, research articles, & speakers bios. You can also sign up for email alerts on the website or subscribe to the podcast on apple podcasts or any other listening platform, so you will be the first to hear about new episodes.
Thank you for listening and good luck to you, making the world a better place by helping one child at a time.
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Tiffany P. Hogan,