EPISODE 230

[INTRODUCTION]

[00:00:00] MD: Okay. So we are continuing on this gratitude journey. I hope that you're enjoying it as much as I'm enjoying it because it really does help the joy in my heart stay full. Today's gratitude is a thank you to Tanya Odom. She gave this review ages ago, but I'm hoping it still holds true. She calls it easy listening. "This is my favorite pediatric therapy podcast to listen to. Michelle is a joy to listen to and is so knowledgeable about the pediatric world. This podcast is a must-have for a relaxing walk, while also getting in some little bites of knowledge." I see what you did there. First bite, bites of knowledge. Well done, friend. Tanya, thank you so much for your kind words and your lovely glowing review.

Our guest today is like a big old squirrel from our normal topics. Today, we have none other than Dr. Susanne Cook from Germany. She is the chair of the International Cluttering Association. We met back at ASHA and I'll tell you more about that in a few seconds. But I hadn't heard a cluttering, but yet there's children around the world and adults around the world that are clutters. Well, I may not personally evaluate and treat it, we still need to know that this exists in the universe and know how to get people there. I hope that you love this empowering hour and keep the reviews coming, folks. They are absolutely glowing and we are grateful for y'all for joining us on this walk. Tanya, thank you and everybody. On to Dr. Susanne.

Hi, folks, and welcome to First Bite: Fed, Fun and Functional. A speech therapy podcast sponsored by SpeechTherapyPD.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC, the All-Things PEDs SLP. I am a colleague in the trenches of home health, early intervention right there with you. I run my own private practice at Heartwood Speech Therapy here in Columbia Town, South Carolina and I guest lecture nationwide on best practices for early intervention for the medically complex infant, toddler and child. First Bite's mission is short and sweet, to bring light, hope, knowledge and joy to the pediatric clinician, parent or advocate.

[0:02:47] EF: By way of a nerdy conversation, so there's plenty of laughter too.

[0:02:51] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:02:55] EF: Ethics on how to run a private practice.

[0:02:58] MD: Pediatric dysphagia to clinical supervision.

[0:03:02] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[0:03:11] MD: To break down the communication barriers so that we can access the knowledge of their fields.

[0:03:16] EF: Or as a close friend says, "To build the bridge." 

[0:03:20] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones.

[0:03:31] EF: Every fourth episode, I join them. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care and non-profit pediatric outpatient settings.

[0:03:52] MD: Sit back, relax, and watch out for all hearth growth and enjoy this geeky gig brought to you by SpeechTherapyPD.com.

[EPISODE]

[0:04:06] MD: Hey, everybody. We have an amazing guest today, and I got to be honest, it's one of those topic areas that I don't practice in because I just Ð it's not within my current scope of practice, but it intrigues me. I want to learn about it. because even though I don't work with fluency, stuttering, or cluttering, I may have a patient referred to me with a pediatric feeding and swallowing disorder, and I need to at least recognize the potential signs and symptoms, and then know how to get that little one to the therapist that does do this craft because that's what it is. It's like an advanced skill set. One that I don't have, but that I recognize is vital for what we do as pediatric clinicians.

Today, I have none other than Dr. Susie Cook, who's actually from Germany and a speech pathologist. She's also the chair of the International Cluttering Association. We met at ASHA, which like basically was a lifetime ago, as ASHA is now only a few months away from us. I kind of pounced on her when we were there. She came by the booth, and I had my little zapper to zap a name tag, and I had my rolling dice. She had her badge, and she was talking about what she did. I was like, "Oh, you don't know me, but I need to shine your light." So I zapped her. Not really zapped her, but I zapped her badge, she rolled the dice, and then we talked about a podcast. So yay, that's how Ð that's her backstory. So Dr. Susie, I know you have a full name, but I don't want to miss pronounce it. Can you please introduce yourself?

[0:05:49] SC: I'm Susanne Cook, and thank you so much for having me here. This is awesome. 

[0:05:53] MD: Yes. Well, thank you. Thank you for letting me zap you at ASHA and not scare you away with my enthusiasm. Yes. Now, are you practicing in Germany or do you live in the states? 

[0:06:06] SC: I do live in the United States. I've been here about a little over 10 years now.

[0:06:13] MD: Nice. Nice. Do you have to have one, and this is just me being curious. In Germany, is there a speech pathology association there or do they Ð how does that work?

[0:06:23] SC: Yes. We do also have a speech pathologist association, and we are part of the European Speech Pathology Association. It's basically similar to here in the United States, there is a yearly conference, we have like statewide representation as well in Germany. Yes, it's not much different to here, I want to say. Of course, it's much smaller because Germany is much smaller than the United States.

[0:06:52] MD: Yes, we're a little bit big, sometimes too big, but that's okay. Yes. Okay. I have only heard the term cluttering once or twice before we met. That was when there was a colleague that Ð when we were talking, and she goes, "Yes, I'm a clutter." I was like, I got to Ð honestly, I thought she was talking about like, in her home, like she cluttered in her home. I was like, "I'm sorry. I mean, I thought it was pretty neat," but I didn't want to be rude, and I didn't want to pry because I didn't really know which way she meant. Then somebody afterwards was like, "No, honey, she was talking about her fluency and the way she speaks." I was like crickets, like I just Ð because this is again, not what I do. I'm excited that we're going to deep dive there, but how did you become a speech pathologist, and then how did you focus on this?

[0:07:49] SC: I became a speech pathologist in Germany. I was in high school, and I wanted to work in a job that had to do with children, and with helping people. Originally, I wanted to become a teacher. But then a friend of ours told me about this profession of speech language pathology and I got really intrigued, so I contacted an SLP in my hometown. I was able to intern for a couple of days, just to get a feel for what this job actually is and what she does, and I loved it. 

After high school, I did an internship in a preschool because that boosts your chances to get accepted in the speech therapy schools. Then, I applied and I was lucky. I did get into one of my preferred schools and Germany. Back then when I did it, it was very, very competitive because the state schools, the ones that weren't private, you did not have to pay any fees to attend.

[0:09:05] MD: Wait. What? Are you telling me there's no tuition?

[0:09:09] SC: Yes.

[0:09:10] MD: Huh. Oh my God. Hold on. That's phenomenal, because I know so many students come out of grad school with $80,000 in debt.

[0:09:19] SC: Yes. You can go to a private school, and of course, then you have to pay, but that wasn't in the books for me. My parents said, "Look, we won't have that money to pay for the tuition." So there are several state-funded schools, but they're obviously very competitive. In the year that I applied, there were 15 spaces for new students and we had over 1000 applicants.

[0:09:51] MD: Oh my God.

[0:09:52] SC: You go through rounds of applications. Yes, I went further and further. But in the end, we were told they had 30 applicants where they were like, "Okay, we have to draw." They rolled the dice and I was lucky.

[0:10:12] MD: Oh my God, that's amazing. Okay. Well, I'm glad you got rolled literally.

[0:10:18] SC: Me too. 

[0:10:22] MD: Okay. Now, is the program the same? Here in the States, you have to have a master's degree in order to practice. But I know Ð I've had guests on from India, and they were sharing how they only have to have a bachelor's degree. I also had Dr. Jeanne Marshall from Australia. She is a lovely human. Y'all are both are just as kind. Y'all would get along like peanut butter and jelly. But her focus is pediatric dysphasia, but she was explaining how in Australia, you only have to have your bachelor's degree in order to practice there as well. What is the makeup like they're in Germany?

[0:10:53] SC: Back in the day, and I'm aging myself here, when I did my Ð

[0:10:57] MD: It's okay. I had my Botox this week, so we're good.

[0:11:01] SC: There wasn't even like one such thing. But it was similar to, I probably want to say similar to a bachelor degree, but we had to Ð it wasn't called that. It was attached to a university, and we had to go through all the different classes, courses. We have to do internships, we did practical intervention under supervision, of course. We had a state exam. After that exam, you were allowed to practice, but only if you pass like the oral and the written exams.

I think the bachelor route only came out a few years ago in Germany. After I finished my education, I practiced first in a private practice, because in Germany, it's different to hear. SLPs are usually not in schools. Most of the therapy has been done in a private practice. The students are coming in the afternoons and in the mornings. We have the young kids who are not in school yet. It's just a little different to hear. Then, back in the day when I did it, you had to work three years at least I think as an employee, before you were allowed to become self-employed. But in the meantime, they have changed this. So now, you can become self-employed pretty much straight after graduating. In my opinion, it was actually good to first work as an employed SLP, because there is so much new stuff you all of a sudden have to do.

[0:12:45] MD: Yes. Yes. I mean, in the States, we have to have our masters, and you have 375 clinical clock hours, plus 25 observation hours, which gives you the 400, and you have your master's. But then, you have that nine-month clinical fellowship. You have to have that supervision for nine months. I mean, you're earning a salary, albeit probably less, but you're still getting the salary. But afterwards, you can go out on your own and doing your own thing. But I always wonder, because even a year out, like nine months out, that's still so fresh. You still need that Ð I mean, I've been out for much longer than nine months, and I still think I need that. I mean, that Ð

[0:13:32] SC: Yes, I agree. Also then, you don't just deal with trying to provide the best care for your patients or clients. But you also have to do all the other stuff like billing, talking to insurances and all that. I felt it was actually a good concept back then. Yes, I worked in a private practice, and this is how I got a little bit into the fluency disorders. The first step was, basically, I had a really good instructor at my school, during my education, she was phenomenal. Then, I already got really interested in fluency disorders. Then, when I started in that private practice, my boss at the time, and another colleague, and myself, we did a lot of stuttering therapy. They had an intensive therapy program for adults, which was over several weekends. Then, we had groups for children. We did not see them always one on one, but in groups, and yes, that was just really powerful and great. But then, both my colleague and my boss got pregnant and I was like, "Oh, shoot."

[0:14:51] MD: We do that sometimes, don't we?

[0:14:54] SC: I loved it. I mean, I had a Ð still, they were there, and I could discuss cases, and we still supported each other, but I had a lot of practice. We were mostly following the Stuttering Modification Concept.

[0:15:13] MD: The what? Stuttering Modification Ð

[0:15:14] SC: Modification Concept. It's like a therapy approach, according to Van Riper, but also, that was adapted by Dell for younger children, so we have that.

[0:15:25] MD: This might be a very naive question. But is that approach across different languages? Because I'm just thinking different languages have different Ð the manner with which the sounds are produced, and the place of the sounds along like the vocal track, it's different. Does that transcend? It's not just an English thing? You see what I'm saying?

[0:15:52] SC: Yes, yes, I do understand. For example, Van Riper has in the identification phase, there is one part where you look at where do we build which sound. Of course, that is slightly different when you go through a chart with a German speaker, rather than an American speaker. Again, yet different to British English speaker because some of the sounds are getting produced differently. But in the end, what we want to achieve with that during the identification phase, it doesn't really matter what the terms are, it's more that the person is aware, what am I doing with my tongue? What am I doing with my lips? Is there a voiced sound, or a voiceless sound, and things like that? So you can adapt it. The Van Riper program originally is obviously from America. Then, we had of course, a translated book and everything. The program itself, you can adapt to the different languages.

[0:16:55] MD: I didn't know that, so that's very cool. But I mean, I don't treat this, so I'm sure somebody out there is like, "Michelle, obviously." But, I mean, I'm learning, so that's very interesting to me.

[0:17:06] SC: Yes. Then, we were also offering parent groups alongside our children group. Because very often, and one of the reasons why we grouped them together was, very often, a child who stutters doesn't know any other kids who stutter. Then, they think they are the only person having this and nobody really talks about it. When they are in the groups, that's already a relief, and that's why self-help is so powerful as well to meet others who are in the same position. But then, think a little further. A parent of a child who stutters, also often does not know another parent of a child who stutters. They go through challenges, and it's just a powerful thing to bring them together and help them learn from each other, not just from us. We also did those parent groups.

[0:18:04] MD: Okay. I have another question. There's an organization called Feeding Matters, and it's the international pediatric feeding disorder awareness group. They have a free program called the Power of Two, where I can refer a caregiver to call and another caregiver will mentor that caregiver for free, and they become like their PFD buddy. Is there anything like that out there for fluency, or for stuttering, or cluttering? 

[0:18:37] SC: I feel yes. The NSA, the National Stuttering Association is doing a lot with their annual conference. They have parent support groups, they have different ways for support groups. As far as I know, they also do a mentoring program for teenagers who stutter who can be mentored by other people who stutter. There are some of those things out there. I totally agree, this is so powerful and so important.

[0:19:07] MD: Yes. Oh, your heart when you were talking about like Ð it just like you sparkled. Folks, I wish you can see this. One day, we will turn this into video as well, but not today because I have no makeup on and I'm sitting in my exercise clothes. Okay. Continue. I'm so sorry. Everybody got pregnant and then what did you do?

[0:19:25] SC: Well, I still continued to run these groups. But what I saw was that we got to a certain point Ð I mentioned earlier that in Germany, we are not automatically in schools. But for some of the kids, I actually got permission to go in school and give an hour off stuttering lecture to the peers, when a student may have experienced like teasing, or bullying, or just people who would not understand that some people speak differently. We did that. But I could only get so far in terms of generalization of learned abilities.

They were able in the group maybe to find some of the techniques, and they showed more confidence because a big part of our therapy as well is that we want to not just teach techniques to appear fluent, it's more about being a confident communicator. It doesn't matter whether I have a disfluency or not, whether I stutter or not. I feel it's so important to say what I want to say and to use the words I want to use, and to speak in the situations I want to speak. 

We got to a certain point, but the generalization was just not really happening. I read around that time about summer camps for children who stutter in Australia, in Adelaide, Australia. It was a program at that time, and I was like, "Oh my goodness, this is amazing. I want to do something like that in Germany." Then, I dug into that topic I found out in Austria, so only a few hours away from where I lived, there was a summer camp by the Austrian Self-Help Organization, and I contacted them. They said, "Yes, we are also looking for therapists, so maybe you can become a therapist for us." I was like, "Yes, that would be cool." I must have somehow mentioned that I'm planning to do something similar in Germany, because the next thing I knew, they wrote on their website, "Oh, yes, this is one of our therapists. Next year, she'll have her own summer camp in Germany." I was like, "Oh my gosh! How did they know that, you know?Ó

[0:21:44] MD: Oh my God, that's amazing.

[0:21:47] SC: So I did organize the first summer camp in Germany. I called it Summer Camp Hessen because that was the state I was having the camp in and I was living at the time. It was for children between nine and 18. I did do it for 10 years, so I had my camp from 2001 to 2011.

[0:22:11] MD: What did that look like? Folks, I love how we were talking about how great the video feed is. Now, it's frozen, but que sera. When you did the summer camps, were they there for the entire summer? Were they there for like four-week increments? Did they sleep there at night? What are we looking at for intensity, therapy, and building confidence?

[0:22:32] SC: It was for three weeks. It was a residential summer camp for three weeks. I had between 10 and 30 participants each year. We Ð I got together a team of therapists and camp counselors. And later, after a few years, I actually had form participants becoming camp counselors. 

[0:22:56] MD: Oh, bless.

[0:22:59] SC: Yes, it was great. We had refresher weekends and refresher weeks so that we could help when they reached a point where they needed a little refresher, or when they just wanted to come back and be with their friends. It was just Ð it was great. We did. The therapy concept was still a modification therapy, but I added fluency shaping. The reason why I did both was, I wanted the children to have the ability to choose what works best in certain situations.

[0:23:38] MD: I don't know what fluency shaping is. 

[0:22:59] SC: Fluency shaping is also like an approach, where you may change the way you're speaking. You use, for example, a very soft onset, and you speak a little slower, or you speak with appropriate pausing, and you concentrate very much on your speech. That helps to make your speech overall more fluent.

[0:24:04] MD: Okay. In my head, I struggle in truth. When people see me lecture, like in public, I struggle to pronounce multisyllabic words. They just get jumbled in my mouth on the way out. When it's a very fancy medical term, I'm just going to point to my slide and say, "Yes, and I can't say that word, but you can read it." Because it just gets garbly-gooped on the way out. I find my head, like I'm quick to use a circumlocution or I'll find like a paraphasia. I'll pull a word that has the same meaning, like the semantic one, but it's a different word because I can't say what it is. I'm not self-diagnosing. I'm just saying, those are the strategies that works for my little neurodiverse brain.

[0:24:55] SC: Yes, yes. You do that for multisyllabic words, maybe me medical terms or some words you don't use every day. For individuals with stuttering, that may happen on a lot of words. That would be Ð it's very tiring if you constantly then have to think of like another word that means identical, synonyms, how to explain it.

[0:25:23] MD: Have you ever found that you've utilized Augmentative and Alternative Communication (AAC) as a tool to assist?

[0:25:29] SC: Not with stuttering, no. I, of course, use AAC in other cases, but never with stuttering.

[0:25:38] MD: I've seen children with apraxia use it as a tool, and I just didn't know who all that else could transcend to, what other populations. This is fascinating. Are you so proud? This is amazing that you did that for 10 years? Is it still running?

[0:25:54] SC: No, no. I had to stop after 10 years when we were basically moving to the United States, because it's hard enough to organize it when you're in the country. But then it's nearly impossible to organize it when you're not there.

[0:26:10] MD: Yes, I cannot fathom. But yes.

[0:26:13] SC: There are other summer camps in Germany as well. I loved the concept, and I still love the concept of intensive therapy of the camaraderie that comes out of it. Some of my campers, they're still friends to this day, and I'm still in contact with some of them. They're adults now. It's just really, really great. Last year, I visited Germany and went to Berlin, and one of my ex-campers has a restaurant there. I met him there, and we sat down, and we chatted. It was really great.

[0:26:53] MD: That's amazing. Okay. What brought you to the States?

[0:26:58] SC: It was my husband's profession. He got posted here. and then we really, really liked it, and that's when we decided we would like to stay.

[0:27:06] MD: Now, did you get your Ph.D. here in the States?

[0:27:09] SC: No, I actually got that in England. After a few years of running my summer camp, I started giving talks about the therapy concept I was using. I did also some talks internationally. I met a professor from University College London, and we got to talk, and I ended up doing a master's of research with him, and then my Ph.D. there as well.

[0:27:39] MD: Amazing. Oh my goodness. That's also a really, really good school. Phenomenal. Do you teach here in the States or do you have a practice?

[0:27:50] SC: Yes, I do work as a speech-language pathologist, as a clinician, and I am still involved in research. At the moment, my research interest includes a lot of cluttering, of course. But yes, I want to say, I'm still looking in all of the areas.

[0:28:13] MD: Beautiful. That's amazing. Okay. Then, what is the difference between stuttering and clutter?

[0:28:21] SC: That's a very loaded and big question. It's that way, because sometimes stuttering, and cluttering can co-occur. It can come together. But cluttering is a fluency disorder where the person speaks at a fast and often irregular rate. Then, there can be additional symptoms that are added to that. For example, what you described earlier is that they may have difficulties with multisyllabic words to for example, pronounced them or say them, and they may leave out a syllable. For example, instead of refrigerator, they may say refgerator, or things like that. 

We have people with cluttering that have a sub-form called syntactic cluttering, where they may have difficulties with narratives and with explaining a personal narrative. They start at one point, and then they go here, there, there, there. They take a lot of different routes, and it's hard for the listener to understand what are they saying.

[0:29:36] MD: I'm only laughing because I feel like that's me sometimes when I get really excited about a topic, but yes, I too can relate to that here. Oh my.

[0:29:48] SC: Yes. That's something that can happen and where you try in therapy, if you feel, yes, this may be a person that displays the syntactic cluttering where you start working on that as well. We also have, of course, the phonological cluttering, and with the phonological cluttering, we have a lot of these telescoping where you shorten words, where you may mix up words. You have also excessive, like normal disfluencies. You use a lot of word repetitions, maybe part sentence repetitions.

[0:30:30] MD: Okay, I've heard that. I've heard my friend that told me that she cluttered. I have heard her do that on numerous occasions, where it like, say the sentence has five words. She would repeat the first three words repetitiously. But it didn't strike me as a stutter if that makes sense. It was like distinctly different from like an auditory discrimination perspective. 

[0:30:55] SC: Yes. That's exactly it. It's those normal disfluencies. When we talk, and I'm thinking of a word, I may repeat the word that I said previously until my brain basically is ready to get the next word out. But for cluttering, that happens very often. We also have these abnormal pauses. That means I have pauses that aren't at the right place in the sentence. For example, I would make a pause right here, and then it throws people off.

[0:31:37] MD: Yes. Because I'm like, ÒOkay, is she going to finish or did we lose our thought?Ó Yes.

[0:31:43] SC: Yes. Then, sometimes also, difficulty with the syllable stress. You would put the syllable stress on the wrong syllable. One word that's super hard for me is, and I probably will stumble across it now as wel,l is chrysanthemum.

[0:32:02] MD: Chrysan Ð I don't know how to say that word. I know what it looks like. I can grow it in my garden.

[0:32:08] SC: Yes. If I would put the syllable stress on the wrong syllable on top of maybe mispronouncing it, then nobody would understand what I'm saying. Yes. You probably know the PPVT, the test?

[0:32:25] MD: Peabody Picture Vocabulary Test. Yes! I remembered!

[0:32:29] SC: When you get to the later words for the older participants, they actually phonologically transcribe how to say the word and also where to put your syllable stress on. 

[0:32:46] MD: I don't think I could. I know I could not do that. I was gifted a cup in the phonemic alphabet, and I didn't know what the cup said. They were like, "Michelle, that's your name" and I was like, "Oh. Well, again, I teach people to eat, and drink, and not Ð thank you very much. It's a beautiful cup."

[0:33:04] SC: Yes. Then, these are kind of some of the signs you can hear when you deal with cluttering. What I forgot earlier when I was talking about syntactic cluttering, but itÕs also probably applicable to the phonological is that there are sometimes pragmatic difficulties. So that the speaker is not able to adjust their articulatory rate to the demands of the moment. To the pragmatic demands, to the semantic syntactic demands. It's just impossible. That's why it's sometimes very difficult to understand what they are saying.

[0:33:46] MD: This is a very personal question, intimate. This is an intimate question. But how often do y'all as therapists that work with fluencies and disorders, how often do y'all recommend a referral to counseling for support, whether it be for the caregivers or for the individual?

[0:34:10] SC: I feel it's hard to put a number on it. But for example, in my summer camp, I did refer to counseling and support I think a couple of times. One time was when the participant was expressing very depressive thoughts. Also, they went slightly in the direction of suicidal thoughts and we immediately called the parents, had contact with the doctor, and were referred to counseling, because this is something I'm not trained in dealing with. 

[0:34:48] MD: Yes, I have caregivers, especially if it's a little one, like a baby and maybe the mom has postpartum depression or anxiety. Where we have to Ð if they're not set for success, they won't be able to get our work with their child to get them to a point of healing. If the child's heart and soul are breaking, then we have to take care of that piece too. I feel very, very strongly. So yes. Folks, there is a new ASHA SIG20, I think, that's geared specifically for counseling. We can add this to our wheelhouse as it pertains to our scope of practice, but be able to clearly delineate when our scope ends, and when the trained professional. That is vital, vital, vital.

[0:35:38] SC: Yes, I totally agree. Yes.

[0:35:40] MD: Yes. Yes. No wonder this is a loaded question. I mean, it's literally, it impacts all of the various domains of communication in one.

[0:35:52] SC: Yes. Yes. That is also why it is so important that when you get an individual with suspected cluttering on your caseload, you do a very thorough assessment to figure out if is it really cluttering. If yes, if you get that indication that it may be cluttering, then it's really important to do the assessment to figure out what is going on, and how do I want to have my therapy plan developed so it really will support that individual.

[0:36:30] MD: Okay. The only fluency assessment that I remember is the SSI-1, SSI-2, Stuttering Severity Instrument. There's probably like 14 editions out now since I was in grad school.

[0:36:43] SC: At the moment, we're at the SSI-4, yes.

[0:36:46] MD: Okay. Yes, I'm a little old. But is that the tool that you use to assess for cluttering or is there a different tool?

[0:36:55] SC: We use kind of a different tool, but there is no such thing as one tool that would give you the diagnosis of cluttering. The first step to figure out whether there may be cluttering or not is an instrument that is called the PCI, the Predictive Cluttering Inventory. But the one thing I want to say here is, it's not a diagnostic instrument. It won't allow you as a clinician then to say, this individual is diagnosed with cluttering.

[0:37:36] MD: It's a screening instrument then?

[0:37:38] SC: Yes. It is on our website, on the ICA website, it is freely available. Also, in a variety of translations. I think we have at least 15 different translations in different languages. The PCI addresses the four areas of pragmatics, speech-motor, language cognition, and motor coordination, and writing. It's basically a seven-point Likert scale. The person who is completing it that can be a teacher, a parent, or maybe you as the SLP as well. If you are familiar with the person, you can rate it. Then, it gives you a first indication of whether it may be cluttering, a mixture of cluttering and stuttering, or no cluttering, basically. 

But please, please, after, it may give you an indication that you may deal with cluttering, you really need to do a comprehensive assessment. Like, we want to, of course, first do the case history to include what was going on, the concerns of maybe parents, or if it's an older client, their own concerns, the history, medical history, and so on, and so forth. Maybe previous treatments. Basically, what we all do when we do a comprehensive case history.

Then, you will go on and do your cluttering assessment that includes different tasks, like for example, oral readings, spontaneous speech, and retelling a memorized story. Remember, there may be difficulties with narrative. We also want to do tests of oral-motor coordination and also questionnaires to inquire a little bit about the possible psychosocial impact of the cluttering on the person's health.

[0:39:46] MD: When you're telling an oral-motor, are you talking like the pa ta ka, pa ta ka kind of thing.

[0:39:51] SC: For example, there is also the screening phonological accuracy test that was developed by Yvonne Van Zaalen. That is where the clients have to say word groups. They're a little difficult to say sometimes. It's two words together. I'm just looking Ð oh, yes. One may be previously unpublished encounters.

[0:40:28] MD: Previously unpublished encounters. That's hard. That would check my articulatory rate.

[0:40:38] SC: Then you look at this word for a few seconds, and then you have to say it, I think three times or five times in a row, as fast as you can, but as accurate as you can. With that, you can also then calculate the phonological accuracy and get basically, not just the mean articulatory rate for those, but also how accurate can they say those multisyllabic words.

[0:41:06] MD: This is math. Wow. This is cool, but like it's math, but yes. I have a working theory that speech pathology brains are attracted to engineer sciency, like number brains. Because they just balance very Ð it's a good working theory, right?

[0:41:25] SC: It could be. I'm just thinking, but yes. If you think about all the statistics we are doing when we do research or Ð yes.

[0:41:34] MD: Yes. Yes. I mean, I married an engineer, most of my friends have married, or have a partner that has a job in that line of work. One of them was like, "Well, my husband isn't an engineer, he's an accountant. Oh, I see what you did there. Michelle. Those are numbers." I was like, "Yes, see." Okay. Continue. I'm so sorry. Yes, math.

[0:41:57] SC: Basically, you do all these different tasks. But if you're recording them, you have to also be aware that a person with cluttering often can control their rate of speech for a certain amount of time, and it may change by the nature of the speaking task. But also, cluttering behaviors are more likely to come up when the speaking task is more informal, is less structured, or maybe more emotional, and also linguistically more complex, for example. You want to get different angles to really tease out what is really going on.

[0:42:37] MD: Yes. Okay. All of this goes through. You have to type up a report. Do you ever have to engage, aside from counselors, are there other interprofessional practice partners, like neurology, or physical, or occupational therapy that you often end up collaborating with in patient care?

[0:42:56] SC: I do sometimes, I would say, collaborate with the OT, for example. Sometimes cluttering also has one feature, or difficulties with writing, with handwriting. This is often done by the OT, for example, if you work in the school system, you may collaborate with the OT then. With the handwriting, I feel nowadays, it's declining because a lot of our students are now using a laptop, and they type this, and you don't often see that handwriting piece as clearly as you may have seen it like a couple of decades ago.

[0:43:37] MD: Yes. Because my oldest was in occupational therapy for his handwriting amongst other things, but he had a concussion when he was in kindergarten, just before first grade. It was to his occipital lobe, so he had visual motor integration deficits afterwards because of the severity of the impact. Yes, it was scary times. But he's tough, that little goose danger. We've had him in and out of OT as he met and plateaued if a worry popped back up. But now, he's like a pro at typing out on a computer, because he's in fourth grade and they do so many activities there. His handwriting has plateaued. But when I asked the teacher about it, because now I'm like hypervigilant. She's like, "Actually, his handwriting looks like all the other fourth grade boys." I was like, "Is this a statement of like he's on par or is it that on par has now receded, regressed?" You see what I'm saying? It's just, yes. I would love to see a research study on that as a trend.

[0:44:49] SC: Yes. But I feel that's something Ð I'm not even sure whether we can still research it, because they don't really practice handwriting that much anymore.
[0:44:58] MD: Cursive has gone away. Yes.

[0:45:02] SC: Yeah. Then, also, sometimes I do collaborate with counselors when it's about the pragmatic aspects of the language. Because for a person with cluttering, sometimes it's very hard to realize, did that person just understand me, or did they not get what I was trying to say? That's also one thing I do a lot in therapy, but we may encounter other areas within pragmatics that we want to work on, and we can do that of course as speech-language pathologists. But maybe, if the school is running like a social skills group with the counselor, with the school counselor, that may also be then a point of collaboration, I want to say.

[0:45:46] MD: That got me thinking about Ð there's a lot of parallels between this, and PFD, and truth. Because what we find is that not that many caregivers are around other caregivers that have PFD. They may not know another child that has PFD as a peer or a classmate. When we have food camps, and they get to see another child trying a food that they may be hesitant on, but it's the other child's go-to food, it helps build confidence to try something new. It's just very Ð

So then, I want to go into treatment, but I feel like before we go to treatment, you were talking about how your association's website, the International Cluttering Association is where this free assessment is housed. What's the history of the International Cluttering Association? How did how did that come to be? Like in my heart, I heard something like, I bet somebody somewhere saw a need, created this organization, and then that's how we have a repository of resources, but like what happened?

[0:46:48] SC: Yes. In 2007, there was a conference in Bulgaria dedicated solely to cluttering. That was the first world conference on cluttering. At that conference, the one thing that was new to me was that, it was people who clutter Ð clinicians and researchers, we all got together and shared our experiences and our knowledge about cluttering. It was really a great experience to be together and to have all these stakeholders together and learn together. Historically, I want to say cluttering was always a little bit of the stepchild of fluency disorders. For example, during my education, we had a whole semester dedicated to fluency disorders, but mostly stuttering. I was just trying to think back. I think we had two lectures on cluttering, and that was it. It was one-week cluttering, and the rest was all stuttering.

One thing I also learned was that, the person with cluttering is not aware about their speech difficulties. That was one thing I learned during that conference. That's not true. I met a person with cluttering from Scotland or North England. He said he always knew something was wrong with his speech, but nobody could tell him what it was. Then, during that conference, the ICA was founded. 

Our primary mission is basically to increase awareness and understanding of cluttering, and also to improve like the treatment and the quality of life for people who clutter. Since that founding moment, the ICA has consistently grown. We had another in-person world conference, I think it was 2012 in the Netherlands. Then. we also collaborated with the International Fluency Association and the International Stuttering Association on two joint world conferences on stuttering and cluttering. One of which was in 2018 in Hiroshima, and one was just last year in Montreal, Canada. We do have a website with a lot of information and resources.

[0:49:06] MD: And your Facebook page is beautiful, by the way, and your Instagram page is beautiful. 

[0:49:10] SC: Well, thank you.

[0:49:11] MD: Yes.

[0:49:12] SC: I will pass it on to our social media officer. She's fantastic. She's doing such a wonderful job.

[0:49:18] MD: Yes. Folks, their Instagram page is @icacluttering, for the International Cluttering Association. You can find them on Instagram @icacluttering. It's very aesthetically pleasing, because sometimes, they're just like crazy looking at it's very overwhelming, but this is just beautiful.

[0:49:36] SC: Thank you. I will pass it on to her. Yes. Then one person step for me, and at that time, I was already the chair elect and my colleague, Charlie Adams was the chair of the ICA at the time.

[0:49:52] MD: Wait. Charlie from University of South Carolina?

[0:49:55] SC: That's him.

[0:49:56] MD: Oh my God. He's right down the street. He told me to get out of my head that Goose was fine. That's hysterical. Goose had developmental disfluency when he was like two, two and a half because the kids too smart for his own good, and he would get his words jumbled up and he was like, "Michelle, he's fine." I was like, "But are you sure?" He was like, "Trust me. He's fine. Give him time." Oh, that's funny. Bless Charlie. Yes. Okay.

[0:50:22] SC: Yes. Charlie and I, we a study with SLPs in the US to find out about the knowledge and confidence of speech-language pathologist with regards to cluttering. What we found was that only just over half of the participants stated that they would be able to identify a person with cluttering. Less than half of the participants rated their knowledge about how to diagnose and treat cluttering as very good, good, or fear. We were like, "Oh my goodness. We really need to do something about that."

At that ASHA convention where we actually presented our findings, the ICA formed an ad hoc committee to review the definition, because that was one of the major things, that there was no agreed-upon definition on cluttering. We had this ad hoc committee to come up with a definition for cluttering. Our goal was, we wanted a clear and concise definition so that also people who are not SLPs or researchers in that area can better understand and recognize it. It should be functional, so that they SLPs can use it to assist them, like how to diagnose cluttering, for example. Also, we wanted to provide a framework for researchers to empirically validate their studies in the area of cluttering because that's really hard if you don't really have a definition to go upon. 

We came up with the three-pronged approach toward a conceptualization of cluttering. This is like a document we came up with. We said words alone aren't sufficient to describe cluttering. We do have the verbal description of the different symptoms, but we also really need those video and audio clips of cluttering. We need input, the testimony from people with cluttering and their family members. That's why it's a three-pronged approach. This paper can also be downloaded from our website for free, and it has really a lot of great information about cluttering.
[0:52:35] MD: Is cluttering now an official Ð is this a diagnosis now within the framework of ICD-10 codes or ICD-11? Or is that a goal to get it within the international classification for billing purposes or where do we set there?

[0:52:55] SC: I would have to look up whether it's in the ICD-10 or 11. I know it's in the DSM-5. When I was doing my master of research, I wrote a paper on cluttering, and I looked it up back then, but that was a while ago. So I don't have the latest information with regards to the ICD, but I seem to recall it was also in there.

[0:53:23] MD: Yes. Because that's one thing, we got the diagnosis for pediatric feeding disorder. We had the term for it, but they had to advocate for years. I mean, years to get it in within the ICD-10 codes. That didn't happen until October 2021, because we've only had it for like a year, because that's something that Ð that's a beast in and of itself. Now, there's a concise definition, but that's only what you were saying like three years in, we've only had the cluttering definition for the last couple of years then.

[0:54:05] SC: No. We do have definitions. There is one from Weiss from 1964. That was the very first definition. We have the lowest common denominator from St. Louis and Schulte from 2011. Then, Van Zaalen added this phonological and syntactic cluttering I think in 2009. There are some definitions, but it's not that, you say, "Oh, this is the definition." The TPICC basically gave us this framework to describe it.

[0:54:39] MD: Beautiful.

[0:54:39] SC: Yes, it's basically we can use and that has a lot of useful information in it. But we did have some definitions before but it was kind of like, some people were using the 1964 definition. Some people were using the 2011 definition. It kind of wasn't really a concise, one definition, this is it. 

[0:55:04] MD: Yes. That's amazing. Well done y'all. Yay. That's a ton of work.

[0:55:10] SC: Yes.

[0:55:10] MD: Okay. Thank you, International Cluttering Association. Well done team. Now that there's more of a concern Ð everybody's speaking the same language about cluttering. Do you treat cluttering the same as you treat stuttering or is there a different framework for treatment methodologies?

[0:55:35] SC: I feel it's different. Because when I'm treating cluttering, really doing what the Ð being aware of how I'm speaking, being aware for example of my pauses of my rate of speech. When I treat cluttering, one thing I do initially is I work a lot on identification. I identify for example, how fast am I speaking. And first, I identify it in others, and then in myself. We use a lot of recordings. We calculate it initially. Later, I only use a little scale from one to five. Our goal is kind of like in the middle, between three and four. But of course, to get to that point, we first have to really calculate it. We know that teenagers speak with up to 5.5 syllables per second and younger children are a little bit slower. The older you get, like after 22, you slow down as well. The teenage population up to age around 22 is the fastest speaking age group that is there.

[0:56:48] MD: I bet they text even faster. Just a thought.

[0:56:50] SC: Yes, absolutely. I can't do that. No, no. 

[0:56:57] MD: Keep up. No, no. I think I would sprain at thumb. But like, yes. Okay, sorry.

[0:57:06] SC: So we do the identification as well of the reactions of the listeners. Did the listener just understand me, or do they look confused? Or does their answer match my topic or do they talk about something completely different? Also, we identify the overall intelligibility. Not just, did the person understand me or did I understand the person? This was maybe too fast or this was too confusing, things like that. 

Then, when they are aware of their beat rate, and of their own speaking, basically, we train them to make appropriate pauses, and focus on prosody. For example, I love to use poems in that phase. You can do that also with children. Because the nursery rhymes or whatever, they have those built-in pauses. You don't even have to think about where do I put a pause? If you use a poem, it's already there. 
[0:58:16] MD: Sorry, I get excited. Do you use any Shel Silverstein because he's still my favorite children's poet after all these years.

[0:58:23] SC: Who was that? Sorry.

[0:58:25] MD: Shel Silverstein?

[0:58:26] SC: I do not know.

[0:58:29] MD: Oh my goodness. Oh my goodness. Okay. He wrote Where the Sidewalk Ends. They're silly, nonsensical things. Where the Sidewalk Ends, A Light in The Attic. He also illustrated them and has a very distinct style of drawing. Oh my gosh. I love, love, love, love him. They were the ones I grew up on. I'm aging myself. I'm 40 now, so they're a little bit older, but my kids still get a giggle out of them. Because there's Captain Hook, that's a very funny poem. But yes, Ð

[0:59:04] SC: That sounds great.

[0:59:04] MD: Yes. Highly recommend it. Now, do you have a favorite poet that you like to use? 

[0:59:10] SC: Not really. I'm just looking at different poems. I'm also looking at poems that have different lengths of lines, for example. Some poems will rhyme, and some poems won't rhyme. It's not necessarily that I say, "Oh, this is my go-to."

[0:59:32] MD: That's nice.

[0:59:34] SC: Yeah. I'm kind of like open to everything.

[0:59:38] MD: I love it.

[0:59:40] SC: I just wrote yours down and I will definitely check that one out because that sounds great. Yes, and then in poems, you can also work beautifully on focusing on prosody, which helps. Then when you work on those narrative skills. That could be, for example, telling a personal narrative without adding unimportant details, which makes it sometimes really hard. Also, we sometimes have this fixation of interest. Then, this person may tell you, every little thing they know about their thing that they feel is the most interesting thing in the world. Then, we will also train, okay, what's important for someone who doesn't know that, and then how can we get whether the person is still interested in hearing more, and then maybe want to move away and say something else. That is basically then also a phase in the therapy that we want to focus on the listener. There, we have also these pragmatic aspects that we can add to the therapy plan here.

[1:00:48] MD: This is beautiful. This is beautiful. See, I may not treat it, but I find it fascinating that this exists, and that there's an Ð if I don't know about it, I'm willing to bet there's far more of us out here that don't know about it that could benefit from learning about it. Now, on the ICA website, is there a way to get in touch with a therapist that's familiar with this?

[1:01:20] SC: Yes. We have a list of international representatives. When you're in a different country, you can contact this person, you can communicate with that person about resources available in your country, but also, all our international representatives, they also get together with each other and support each other. So that's pretty cool. You can get in touch, you can just email us at icacluttering@gmail.com. Then one of us will get in touch with you if you have a specific question. If you're interested in the topic, you may want to consider coming to our next world conference because we are just currently planning our third and personal world conference about cluttering. It'll be this year in September, September 16 and 17 in Poland, in Katowice.

[1:02:19] MD: Oh my gosh, that's amazing. Okay. But what if I don't speak Polish? I speak English and bad English. Am I going to be okay?

[1:02:27] SC: You will be okay because the conference language is English. We have already some very exciting keynote speakers that just confirmed. Like we have Kathy Scalise and Scott Yaruss talking about the psychosocial impact of cluttering on a person's life. We will have Rutger Wilhelm who is our chair-elect, and also a person who clutters, who will talk about the perspective of a person with cluttering. Yes, it'll be a fantastic conference. More information about that is also on our website, and is forthcoming, like the call for paper will open soon, and yes, it's exciting.

[1:03:11] MD: That is phenomenal. Oh, my goodness. Okay. So September 16th and 17th in Poland.

[1:03:17] SC: Yes. Double checking the date that I gave you, the correct date.

[1:03:25] MD: That would be me.

[1:03:26] SC: Yes, 16 and 17 in Poland at the University of Silesia. Yes, it'll be great.

[1:03:35] MD: Awesome. Oh my goodness. Okay. One, this was phenomenal. Thank you, with my whole heart for coming on and talking about something that I know nothing about and I'm very excited about. Two, for sharing your story because you have Ð your personal story is so intertwined with this. Thank you for sharing that journey with us, because I know that's a lot on a heart, so thank you. If somebody's listening, and they're like, "Oh my gosh. This is my jam. This is my thing. I want to support it." Is there a way that people could donate or support ICA?

[1:04:13] SC: Support, definitely. We always love when people may be interested in joining our team. With donations, honestly, I'm not 100% sure right now because we Ð like everyone who is interested in cluttering can become a member of the ICA free of cost. We do not collect membership dues at the moment. That's why I'm kind of like at the moment a little unsure about donating to us, although I could probably figure that out or find out about that.

[1:04:49] MD: Well, we'll leave it as a to be determined. If you have a little love money, hang on to it, hold it tight, maybe save up for a ticket to Poland. In the event you ever have like a scholarship or something established, maybe send it that way. Then, people can reach you Ð how can people reach you?

[1:05:11] SC: They can reach us either via Instagram or Facebook. But also, you can email us, icacluttering@gmail.com. Our website is icacluttering.com. Lots of information. There are also the links to our social media sites and also to our email, so please reach out if you have any questions or if you want to support us, we will be happy to help you.

[1:05:39] MD: Excellent. Thank you. Thank you. Folks, thank you. Sussanne, thank you so much for coming on. Folks, you know we love it when you hit us up at firstbitepodcast.com. If there is a topic, or a speaker, or a question that you have, please message us there through Instagram or on the Facebook page, myself or Erin, or somebody's going to answer and get back to you. You know we love it when you leave a kind review on Apple podcast, and hit us up with our five stars. Thank you for joining us, and don't forget, in about week or two, we kick off the Pediatric Feeding Disorder Awareness Month for all of May. Stay tuned for PFD-themed courses. 

[OUTRO]

[1:06:33] MD: Feeding Matters guide system-wide changes by uniting caregivers, professionals, and community partners under the Pediatric Feeding Disorder Alliance. What is this alliance? The alliance is an open access collaborative community focused on achieving strategic goals within three focus areas; education, advocacy and research. Who is the alliance? It's you. The alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. Today, 187 professionals, caregivers and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together.

That's a wrap folks. Once again, thank you for listening to First Bite: Fed, Fun, and Functional. I'm your humble but yet sassy host, Michelle Dawson, the All-Things PEDs SLP. This podcast is part of a course offered for continuing education through SpeechTherapyPD.com. Please, check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind, and feed those babies.

[DISCLAIMER]

[1:08:12] MD: Hey. It's Michelle Dawson here. I need to lay out my disclosure statements. If you ever wondered how bad my ADD, ADHD, and lack of sleep Monday through Monday, actually as well, here you go. These are my non-financial disclosure statements. I volunteer with Feeding Matters. I'm a former treasurer with the Council of State Association Presidents and the past president with the South Carolina Speech Language Hearing Association. I am a current member of both ASHA and SCSHA. For this year, for 2021, I volunteered for the Pediatric Feeding Disorder Planning Committee for the ASHA 2021 convention.

My financial disclosures. All right. I receive compensation for First Bite presentations, as well as talking teletherapy and understanding dysphasia from SpeechTherapyPD.com. I also receive royalties from SpeechTherapyPD.com for ongoing webinars that I have on their website, as well as compensation from PESI Incorporate for a lecture course webinar that I have on their website as well. I am the coordinator for clinical education and clinical assistant professor for the Masters of Speech Language Pathology program at Francis Marion University in Florence, South Carolina, for which I receive an annual salary. I also receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders, that I self-published and it's available on Amazon. I do receive royalties from the accompanying 13.5-hour CEU for the book from SpeechTherapyPD.com. So yes, I stay pretty busy, but those are my financial and non-financial disclosures. If you ever have any questions, please feel free to reach out. Thanks, y'all. Bye.

[1:10:20] EF: The views and opinions expressed in today's podcasts do not reflect the organizations associated with the speakers and are their views and opinions solely.

[END]
FBP 230		Transcript

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