Improving Clarity of Speech in PWS [2018 CONFERENCE VIDEO]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also watch the full set of conference videos on YouTube.


Video Transcript

Kolby Kail:

I’m Kolby. It’s nice to meet everybody and yes, we are going be talking about speech clarity today. I came into Prader-Willi in October about 2015 and I met Jaden. Jaden and I became friends pretty quickly. They were looking for a PROMPT therapist and were hoping that PROMPT could really help increase his clarity. That’s where I came and Jaden and I hit it off pretty quickly. He likes sports; I love sports. I'm very silly and he is very silly. We had a really good time together. On our first meeting, I went to his public school and his current SLP, his parents, and their principal all watched the first session. It was very scary, but it went really well, and we became friends. It was a good thing. Jaden had errors in vowels and consonants. His speech clarity was 10-20 percent when I met him. We moved from there. PROMPT was my main focus with him to start; and then after about a year, we noticed that he wasn't carrying it over into other environments. I started to do a little bit of digging of what it was that Jaden was having difficulty doing; that was keeping his tongue within the mouth and keeping his lips together. He was having difficulty with the production of most of his consonants; he couldn't differentiate the front of the tongue from the back of the tongue. He could move that quickly and get those sounds to come out quickly. Then we continued to work on grammar. That's where I started looking into oral facial myology and trying to figure out how could I make Jaden’s articulators stronger and have more mobility to move quicker within the mouth. I have a video of Jaden when we first started.

(Video shown of Kolby working with Jaden)

Differentiation of movement is where the jaw, the lips, the tongue—they need to work differentially for mature speech to emerge. This means that they must work independently from one another and the rest of the body. The client who moves his head while trying to move his lips is demonstrating that poor differential movement. How we fix that is going to be stabilizing the jaw or stabilizing extra movements that are going along with that. We’re going to watch another video and you're going to see how there's no differentiation of movement. Watch his jaw and his head.

(Video shown of Kolby working with Jaden)

If we look at that developmentally, the head becomes different from the body. The jaw becomes different from the head, the lips from the jaw, the tongue from the jaw, the tongue tip, from the tongue's body, back from the tongue body and then those lateral margins are going to come from the tongue body. Correcting positioning of movement of the tongue and lips are based upon stability of the jaw and the tongue's ability to remain neutral in a neutral position to that jaw movement. If you're looking here and we say the word “cat”, you’ve got to remember that the tongue has to start in the back and then quickly come to the front to hit that “T”. ‘’Cat’’. If you look in the mouth you're going from back to front without differentiation of the tongue. The back is going to work the whole thing together, so you might get “tat”; you might get “cac”; you might get one of those things just because that's as fast as the tongue can move with no differentiation. If you see the word “eat” you can feel how your tongue is pressed against the back of those molars. If you just kind of say it to yourselves or out loud “eat” and the tongue stays pushed against the back molars. Then “each”; the tongue and the lips have to work differently because the lips have to round while the back of the tongue is getting stable in the back of the mouth for that vowel sound.

You can see how we have to have differentiation of movement to get that clear speech. If you don't have that, that's where we get a speech sound disorder. When you guys are watching your kids eat, every once in a while, we see those kids that over stuff the mouth. You're looking at the munching sound so no matter if I put a lot of food in my mouth and I start to chew, I will hit something. That's why we're putting so much food in the mouth. It's because it will hit something. The tongue doesn't have to do anything. The cheeks are holding the food in because they're pretty strong muscles. It's munch, much, munch and you're swallowing and swallowing huge pieces of food or big gulps of air. Your kid is bloated and burping or has that really bad GERD in the stomach because we have so much ungrinded food within the stomach. Even though speech and language is different than chewing, we're using a lot of those muscles. You really want to make sure that the muscles are being used also during feeding. An easy way to do this to start is: you have your plate of food; take maybe two bites to start for the first week. You're going to eat your food and get full. However, you need to do it and then with these two bites; we’re going to take very small bites. We're going to move it first on the left; switch it over to the right; then we get to swallow. We're using all of those muscles; strengthening those muscles; and getting them to know what they need to do because we need the muscles to be strong and to have their own independent movements even in swallowing. If you don't have differentiation of movement you get a speech sound disorder.

Articulation disorders: the inability to say certain sounds correctly beyond the typical age; sounds can be dropped, added, distorted, or substituted. Phonological processes: the child makes predictable patterns beyond the typical age; that final constant deletion. In the beginning we saw Jaden. He was dropping those sounds; backing or fronting. Like “tat”- would be fronting or “cac” would be backing. Apraxia is a motor planning issue and dysarthria is a motor speech issue. We're going to keep going on that. In terms of all we know, speech research has shown that speech is motor planning. Many things that we learn; how motor planning walking; in a motor plan your brain has told your legs exactly how to walk and that's how you've gotten your gait. As adults, if I asked all of you for the rest of the conference to walk with a new gait all the time you're going to change your pattern, think of how hard it would be and how much you would have to think about that; to be able to walk like that the rest of the conference. You have to remember how hard your kids are working to have that clarity of speech. It's hard to change a pattern, especially if we're beyond the typical age of development. You guys are all beyond the typical age of development to learn to walk, so learning a new limp would be very hard. How often would you have to practice that new limp to make it your unconscious new walk? You’re going to practice probably a few times a day. Speech must be practiced a few times a day. You've got to do your homework. I can't do it in once a week for an hour. I can make slow changes and we will get progress but to see progress that you're going to be happy with we must have that carryover. I will work on refining and correcting the movements; you're going to work on patterning those movements that I've refined.

Apraxia of speech is an acquired oral motor disorder affecting an individual's ability to translate conscious speech plans into motor plans (which results in limited and difficult speech ability). By definition, apraxia of speech affects volitional motor movements. However, automatic speech almost always is affected as well. It’s an uncommon speech disorder. Due to the fact that there's common comorbidity. Of all the other things that go along with disorders it's very hard to just say it's apraxia. Usually we do have apraxia with other syndromes or disorders. The brain struggles to develop plans for speech muscles. Speech muscles are not weak, but usually we do have weakness, so we need to strengthen the muscles and be able to get them working independently.

Here are some of the symptoms that go along with apraxia. There’s going to be the difficulty moving smoothly from one sound to another. You’re going to have those groping movements of the jaw, the lips, the tongue, to make those correct sounds; vowel distortions and wrong stress. You might say “banana” or “banana” or “banana”. We're looking for where is the breakdown. In consistency of word production, difficulty imitating words, and inconsistent voicing errors. Other symptoms that go along with that are going to be delayed language, reduced vocabulary, delayed grammatical skills, delayed intellect and motor development, spelling, and reading difficulty with gross and fine motor with oral manipulation. Sometimes tooth brushing—it's that sensory piece that goes along with it.

Dysarthria is a motor speech disorder resulting from neurological injury to the motor component of the motor speech system. You have a motor homunculus, which is aware and it's on this side of the brain. That's where motor speed is learned and it starts with the trunk of the body as you grow. You can sit up and then it moves from there. It comes down at the last to develop; the tongue and the lips and the tips of the fingers. This is where dysarthria has the breakdown: on that motor homunculus. It is a condition where the muscles are weak, and you have difficulty controlling them. It's characterized by slow or slurred speech. However, sometimes you have that very rapid speech that's difficult to understand. Slowed speech is an inability to talk louder than a whisper. Sometimes it's raspy and strained; there's uneven or abnormal rhythm; uneven speech volume; sometimes it's monotone or we have difficulty moving the facial muscles.

I'm going to look at articulation development here. When you go to the school districts, the school district lets you get through all the way until the developmental sound is over. That's why sometimes the patterning-if you are in speech for so long in school districts-they wait until the actual development is over. If we look here at the “P”, the “B”, the “M”, the “H”; the first developing sounds; at one years old, 50% of all children are able to say those sounds. By three years, 90% of children are able to say them with 90% accuracy. Take the “P”—you don't want to wait until the child is three before we start working on that “P” sound because the development and the patterning is over. If I had you guys walk with a limp the rest of the day, you don't want to wait. It's harder to change it once it's done. You want to start earlier. I would say somewhere around like two or two and a half, you're noticing that the “P”, the “B”, and the “M”. We are going to watch a little video of a boy. You don’t want to wait until the developmental time is over. Let's look this video. Here we're looking for the “P”, the “B”, and that “M”.

(Video shown)

Such a sweet little man right there. You can see that he is making the “P’s”, the “B’s” and the “M” with the teeth instead of the lips. He’s bringing it in. Even the “moo”. Instead of having that “ooh” it was “moo” and he brought in again. So, we are looking for independent movement. We’ve got to get that lip rounding and retracting so you can get the sounds that we're looking for.  

Intelligibility: by 4 years old, it should be a 100% intelligible. That does not mean that they're making every sound correctly as we saw on the articulation. If I had a lisp and an “R” sound and I said (with lisp), “my sister wants some water”; pretty much everyone probably knows what the message I was trying to convey. I did have an articulation disorder, but it didn't change the message, so I would still be a 100% intelligible due to the fact that you could clear my message.

Oral facial myology: this is the definition from Sandra Holtzman. Sandra Holtzman was my mentor and who I learned things from. She's one of the leaders. This her book here. Please feel free to come check it out whenever you would like. Oral facial myology is the study and treatment of oral and facial muscles as they relate to speech, dentition, chewing/bollus collection, swallowing, and overall mental and physical health.

Here are some fun pictures to see. The first one is going to be before, after this one, and then untreated and then before, after, untreated. What is the oral facial mild functional disorder? It's a lack of a lip seal, possibly mouth breathing, and leading to occlusal dysfunction (which just means the teeth are not lined up correctly). Low/forward rest tongue position may be linked to orthodontic relapse, psychological, cosmetic, and structural issues; failure to chew properly; incorrect swallowing (leading to GERD); Obstructive Sleep Apnea—again, we're not just looking at children, this is adults as well that have mild functional disorders—and then speech problems.

So when you do have a speech problem, it's usually going to affect that tongue tip and how the tongue sits in the front of the mouth. Front sounds: the “T”, the “D”, the “N”, and the “L” and then the “S”, the “C”, the “Z” the “SH”, the “CH”, and the “J” sound. Let's look at a video and we’re going to be focusing on those front sounds. You can already see the lower jaw kind of comes out from here.

(Video is shown)

So that was homework. He had to say his “T” sound with the mouth prompt and he had to say it consistently. It’s hard to do as you can see so that was his whole—the only homework assignment he had for three times a day.

Here's the tongue tie and the tongue tie is going to restrict mobility and function. You can see how he has that piece of tether tissue holding his tongue to the ground. Now it's been fixed and now he has that stretching mobility. (Picture shown of cross-bite) Earlier when we were talking about the facial summary, mental, and physical health; just look at the face structure. Don't even really look at her teeth; just look at how much more (and for lack of a better word) beautiful. The way your tongue sits within the mouth changes how your face is structured and how it grows.

(Picture shown of open mouth structure of lip tie) And then there's a lip tie. This man sits here with his tongue in the front you can see how it's pushing these top teeth up and these teeth are going to come in and out. This one's already kind of coming out in front and so he's getting an open bite due to the fact that he's resting his tongue between there. Also, what you're going to see these teeth are starting to tip in lingually because his mouth is open most of the time. The cheek muscles pushed the teeth in and instead of having a round U-shaped palate, it becomes a V.

What is myofunctional therapy? It’s a series of exercises to repattern and optimize that oral facial functions, to habituate static and dynamic, and coordinate patterns that promote stable and correct oral postures. It may include programs that eliminate oral habits such as tongue thrust or thumb sucking. Even closed mouth. We're correcting one of those restricted frenulums for lip or tongue. My mouth props: in oral facial myology, we use some props to stabilize that jaw. I have some mouth props here if you guys want to look at them. This button is to strengthen the lips and it's just for tongue strength. I have a lip meter here and we test the lips prior to. An average lip strength is between 3 and 6 pounds. Most of the kids that I start with are by far usually around 1 lb. What we do is put the two teeth together; this in front, use strength, and they just hold and pull. Usually we do about five. You put it in front of the teeth, wrap it around, and then you hold it for five seconds where the button doesn't come out. You're working on that strength there. Then you pull it out. You're doing this three times a day to strengthen those lips. There is the battle buttons. I use a stick and you saw the stick with Jaden. I use the stick to help guide. Sometimes we have to do tongue out-and-in and so when I want a tongue out-and-in, I want it straight. I don't want it to curl, so it's a straight out-and-in. You'll notice that my jaw does not move; same with back and forth. We are going to be looking at the lateral movements. Can the jaw stay out of the movement? We need the tongue to work independently. Here is a U-shaped palate and then one that has the tongue with a forward rest position. You can see that because in normal tongue posture or resting posture, the tongue is slightly suctioned to the roof of the mouth (pushing on all inside lingual sides of the teeth). Here on the other side we have a V-shaped palate and that's because the tongue is low and forward within the mouth. The cheeks have pushed all of this in. You're sitting like this and breathing through the mouth.

Our goals of oral facial myofunctional therapy: we want the tongue up in the palate tongue rest position, a lip seal at rest, correcting excessive habits (that's that thumb sucking or chewing on clothes), a posterior closed teeth swallow, chewing properly and drinking, and then nasal breathing. Nasal breathing is quite huge. I don't know if anyone knows about this and I didn't know about it as much until I got into oral facial myology, but if you are not nose breathing you are losing so much function within the body. It really helps keep the passages open because they will atrophy if you don't use your nasal passages. They'll get smaller. It warms the air, it cleans the air, and usually when you're mouth breathing you're only using the upper part of the of the lungs. That increases the fight-or-flight, so if you breathe through your nose that goes down deeper into the lungs and you get the calming effect. It stimulates, and it makes you calmer when you breathe properly. If your child is mouth breathing at night, I'm going to recommend that you tape their lips together. 80% of all of your growth hormones do come at night. What you do is you take a very soft tape that you use during a first-aid. You want to cross the lips here, so the lips stay together. They nose breathe at night. The lips are going to grow and again the hormones are going to be coming. It's going to grow properly and keep those lips and the nasal passage is better. We don’t want a baby mouth breathing. When your child is mouth breathing it is a cross. I've tried that some people. You can use it just up here. Usually my older clients, the one that we saw where his teeth were coming up and this tooth looks kind of high; he mouths breathes so much that his mom and dad think it's somewhere around like three o'clock that his mouth just pops open and then we find the tape somewhere else. As soon as they started crossing it he could keep the mouth and the lips together all night long. He's doing much better during the day due to the fact that he can do it all night.


May I ask something about mouth breathing? Is that something you want to see just when they are sleeping or all the time?


All the time. This little girl here, just look at this little girl here. Just look at the difference as a mouth breather; her eyes and the dark circles she has. Afterward, she looks brighter. It changes the way the face looks and the way the face grows. You want it all the time. We take our little stick and we start with a small amount of time. Sometimes I use the plastic little bread ties. When they get to watch TV, when the mouth comes open you would remind them to put this in. They're pushing on this. The reason I don't do the tape (you can do the tape during the day) is that it’s not doing anything for the muscle. Even if you use the button. I don't love the button because it's round during this type of posture, but you could just sit with it in and get that lip closure. So yes, you want you want nose breathing all the time. It'll change the way that the teeth grow, and it'll push them in and get that narrow palate. If you have a narrow palate, it's much harder to articulate because when we did that “e”, the tongue is pushing on those back teeth. If you don't have very much space in there, it's very hard to get that quick accurate movement. That’s why you see a lot of expanders in kids. You can see the orthodontists are starting much earlier to expand the palate because of the growth and the way that the tongue sets. Then we can take the braces off earlier and see if what they do worked. Most the Orthodontic Association recommends that you get your first orthodontic visit prior to age seven. My daughter is six years old (well she just turned seven) and is in braces. My daughter's a mouth breather. Her teeth were falling in. She lost a lot of teeth due to the mouth breathing because the pressure was what keeps your teeth up and in. When you have them open they want to keep growing and coming down. She's seven and I think she's lost ten teeth and so very early. You want to make sure that you if you do see orthodontic problems, get in there and if you don't believe them go to a second one. Just get in there and start to get some knowledge about how your child's mouth should grow. It’s really going to affect the clarity of speech. You can see here the way the face grows and how it gets long and skinny. Here it's kind of round and plump. We’re going to watch some videos.

(Videos shown)

So, when you have an open bite where the teeth are coming out, it's very hard to stick the button in to hold due to the teeth pushing on it. Sometimes we have to do different exercises because the teeth are making it, so you can't get flat against that because the teeth are sticking out from the tongue pushing on them. Here's another lip exercise.

(Video shown)

Here we're starting to see a little more of the differentiation of the tongue. The lateral margins is kind of a taco tongue. How can you get that? The lateral margins work independent of themselves vary a lot. Most of my kids cannot make a taco tongue. Jaden had worked on taco tongue for quite some time and now it's called hot dog tongue. This was the one time I got to use food with him. He's going to hold something in the middle and hold it where the bolus would be for swallowing (back in the back of the tongue)

(Video shown)

We're going to move into PROMPT. I began PROMPT in 2011 and it changed the way I started doing therapy. Not only did the kids increase in their productions but it was more fun. It was much more fun because you're using speech during functional communication, meaning we put words to games. Instead of looking at a piece of paper, say some words, then get two turns, then we go back to a sheet of paper. We are going to structure the therapy with the sounds, words, whatever it is that they need within the session.

PROMPT stands for Prompts for Restructuring Oral Musculature Phonetic Targets. It is a tactile kinesthetic approach that involves touch cues to the individual articulators of the jaw, tongue, and lips to manually guide them through the target word phrase or sentence. It stresses motor control and precision of the motor muscle movements. It eliminates unnecessary muscle or jaw movements, such as jaw sliding, inadequate lip retracting, or rounding. Much of the PROMPT method is based on the motor learning theory, which refers to a set of processes associated with practice or experiences leading to a relatively permanent change in the capacity for movement. Motor learning is facilitated by a number of factors, pertaining to the structure of practice, stimulus selection and nature of reinforcement behavior treatment. Behavioral treatments are known to promote brain reorganization and plasticity. It can be best achieved through a systematic application of principles of motor learning during the rehabilitation regime. As we talked earlier, motor learning pertains to many things; not only speaking, walking, learning ballet, learning to play the piano. There is all the motor learning skills. So, what are the main points of learning the motor learning theory? The precursors: we really want that great relationship with the therapist. This is a trust thing. I am going to push them. I see them once a week for an hour. I’m going to push them pretty hard, so they have to know that I love them; that I'm there for them; I will guide them through and I will make sure that they are going to make it. If not, I’m not going to make it, so they cry. I’m going to be there to help them and get them through. We want to keep the child's attention and motivate them. We pre-practice words so during the activity they have already practiced the word a few times. It’s not like we just jump in. You usually practice the words a few times. We really want to increase the amount of speech trials or amount of motor movement practice. We use activities in functional speech that decrease the break time and the praise time. It is more meaningful to use those speech words in context than looking at a picture. It helps them understand where you use the language and how you use the language. Distributed practice is much more beneficial than mass practice. We want shorter bursts of therapy, so rather than I have my parents just do homework once a day. I need you to work on it in the morning, after school, and at night so it's only five minutes. It’s still 15 minutes, but you're distributing it throughout the day just as if you were learning to walk again. It would be better if you practice that many times. Random practice is better than block practice, so I don't know if you guys have experienced this. If you let's say we're just working on the “F” sound all of a sudden everything has an “F” in it (even words that don't have any “F’s”, they would generalize that sound. This takes it away by giving them more sounds to work on, but they have to use it in functional speech, so they know that every word doesn't start with the “F”. We’re going to start lots of words and we're going to articulate all of them. That essential feedback: so not only do we cue while we're there, I talked about, “way to get those lips rounded. I like the way you put the air over the lips”. There's lots of talking so they can hear what they're doing right, so that when they're by themselves they know what they're doing alright.

We start with the evaluation. You can get the evaluation by a private SLP or your school district. The school district is obviously going to be cheaper and I will take their information because you're going to get a full email. I will take all of that information and put it into the conceptual framework, which we're going to go over. Where is the tone? How are they psychologically? Where are the cognitive levels? I don't need to do everything. I don't even have a psychologist in my office. Getting that information from the school district, you can absolutely do that. This speech eval- we don't just want words and single word utterances in the Goldman-Fristoe. Yes, the Goldman-Fristoe is fine. I don't mind it. Functional speech to say “ball”, “wall”, “door”; it just changed to “the door is open”. The sound before the “D” and the sound after are affected. The way that the speech comes out affects the clarity of speech. We want them to take a speech sample. I talked to some of the people at lunch. In my opinion, this should be videotaped, because again, us as parents; we see the kids so often that we don't notice the small little changes. If you have that video to go back to every once in a while, you're going to see this is working because sometimes you forget. This has been a long road. Why am I still here? If you have the video, you can see they are making changes.

Let’s check out that conceptual framework of PROMPT. PROMPT is not only a hands-on method of speech correction, it's the conceptual framework. PROMPT addresses the entire act of communication that includes the physical sensory, cognitive linguistic, and the social domains that interact together. It is based on the Dynamic Systems Theory, which states that motor speech production is the result of coordinated actions between and amongst all parts. If any of these global domains (communication happens within those parts) is disordered, delayed, or damaged then speech production may not happen typically. The tactile kinesthetic approach of PROMPT is how we address these and how it is affected by those. Looking at the physical sensory, the physical touch changes the physiological states of that flight-or-fight alerting. It settles the body and it allows them to the ability to discriminate and focus. If we move to social-emotional, the tactile kinesthetic approach helps the social-emotional stage systems; nurturing and developing the self, differentiating themselves from others, and the ability to develop trust. Touch helps the cognitive linguistic states, such as association of information, the various levels of perception, and concept formation. I get your evaluation from whoever you got your evaluation by, even if it's me, and I start answering questions. You can see that I have put the theorists at the end of where these questions come from because it's all evidence based. It does come from theories that we learn in college.

In terms of the physical-sensory domain, are the child’s skeletal facial structures and muscular development normal for the child's chronological age and symmetry aligned with both the vertical and horizontal planes? Are they opening the jaw too much? Are they rounding and retracting a little or enough? How is that looking? Is the child's tone normal? If not, is it either hyper or hypotonus, showing in the whole body, the trunk, or the face? Is there neurological damage and if so is it that the higher cortical centers are unable to inhibit lower-level behavior or early motor reflexes? If you have a strong gag reflex we've got to get rid of that gag reflex. It's hard to make a case when you gag every time you make it so sometimes we have to inhibit some reflexes that come in development. We're trying to eliminate them. Does the child exhibit differences or difficulties in processing tactile, kinesthetic, proprioceptive, auditory, or visual input?

The cognitive linguistic domain: How easy is it for the child to perceive, discriminate, retrieve, and coordinate different types of levels of sensory and perceptual inputs for developing concepts and speech and production of speech.? How did the child use early sensory-perception information to develop action schemas to interact with their environment? How tightly structured does the event or the context need to be from highly structured to unstructured, in order for the child to maintain that successful integration and the ability to learn?

The social-emotional debate: domain how and why does the child express their wants and needs? How does the child use significant others in the environment to gain acquisition of knowledge? How do they communicate in their environment? In PROMPT, we see behavior is viewed as a byproduct; as a disturbance of one of these it's not always because they're trying to get out of something. Somewhere there's a breakdown and I need to figure out what happened in that break down, so I can bring them back and get this speech corrected.

Here’s some terms of reference. These are definitions that you're going to hear a lot when we talk about speech. Does anyone want me to go over these? How does the tongue look at rest? It's supposed to be at the top of the mouth, pushing against all those teeth. Your teeth really shouldn't meet together. Probably everyone here, their teeth aren't touching. They're about two to three millimeters apart. Co-articulation, the sound before a word and after a word, affect the word. Degrees of freedom: with Jaden, he had not enough degrees of freedom. His lips did not round together. We didn't have any degrees of freedom, where we want the mouth to open up a little bit. We have “e”, “ooh”, but not “ah”, because that would be too many degrees of freedom because the jaw has dropped. Kinesthesia: how does it feel and can you feel what the mouth is supposed to be doing within the mouth? How hard do you push? How not hard do you push? A phoneme: smallest sound place of contact. We want to know where the articulators are going. The planes of movement: that interaural space and the articulators move in several different directions. Your tongue moves a lot of different ways. It moves more than any other muscle within the body. You can curl it. You can make the back move differently than the front.

Those questions that we just asked go into the system analysis observation. If you look on the system analysis here, there are stage 1 stage 2, stage 3, stage 4, stage 5, and stage 6. Stage 7 is prosody. That's going to be the timing. We go through and answer these and then we fill out these motor speech hierarchies. If you don't have the tone for speech, it's going to be hard if you are slouched over and you can't inhale the air to get enough speech out. Then we have to say that we’ve got to work on it. We're going to refer you to occupational therapy. She's trying to get you up so that the lungs can get enough air into where you can hold a sentence. The phonological control: can you turn your voice on it and off on command? When we watch some of these videos, some of my kids were not really turning their voice on and off on commands. The mandibular control: this is going to be the jaw. We're going to start with the jaw because remember we're looking for stability. That is proximal (the closest to the center). It is where we want stability to start. Remember you sit up and you hold your body up first? That's where we want it to stay. The jaw is what we want to stay. If we think about a child's arm, when you take something away. When the child is little and they want to grab a Cheerio, the whole arm comes up and over grabs the Cheerio and stuffs it in. As we grow the arm kind of stays closed here to the body. Unless we're putting a shirt on, your arm really doesn't leave the side of your body. The arm disassociates from the wrist, which disassociates from the fingers. It happens all over the body. It's not just the jaw disassociating from the tongue, disassociating from the lips. It happens all over the body, a disassociation. Here we're looking for that mandibular. If I’m saying “mama” I don't want “mawma”. I'm going to have to hold the jaw up for the child and get “mama”. That’s what we're doing in PROMPT. We’re holding stability of the jaw, so only the lips will work, don't get too many degrees of freedom and it changes the sound or the production of the speech and the labial facial control. We're looking at the rounding and retracting. Then we have the lingual control, which is the tongue. Then a little bit higher, we're going to sequencing of movements. We are looking at multiple planes of movement. Prosody is going to be that kind of up and down, sing song of speech. Here’s some words that go with all those stages. In stage 1 and 2, you're doing “hat”, “hot”, and “man”. Here we have “oom”. The jaw is up. Then “hot”, the jaw drops and comes back; same with the “hat”, the very big jaw sounds there. Then stage 2, stage 3, 4, and 5 you are you going to get more of the “ee”, “oo”, “aa”. You’re going to get some more diphthongs in there. Even higher, we can see how the sounds get harder just as they did on the articulation development. It gets harder and harder as we go.

Then we have the 4 levels of PROMPT. You have Parameter PROMPT, this is going to be more of the bass control where I'm going to hold the jaw and keep the jaw in control. The Syllable PROMPT, this is going to be like, “do" one syllable and I will hold the whole face and not let anything move. I can hold the whole face for that Complex PROMPT. This one is not used all that often. It's usually more in the beginning. Then there is the surface PROMPT. What you're going to see me—it's more where I'm putting my lips, all my hands all over their face. Now I’m just going to be showing different videos about different kids to give you guys a range.

(Videos shown)

With PROMPT, I try not to always make it my words. If he wants to say, “what do I get?”, we changed the sentence. We work in the moment. If that's what he wants to get however, he has to get it right. Sometimes I have to go in and help but you'll notice that we know whatever the communication function or the communication intent, I want to clear that one. I'm going to show you some kids before where we started and where we are now. We can start with Sunny. Here he is with his ILS. If you look over in the corner over here, you can see at this point he was using an AAC device because his speech was so unclear.

(Video compilation shown)

So, you have to actually go to PROMPT training and there's levels you have to finish, self-study projects, and practice them. I have one more self-study process that I have to complete and then I'm certified as a PROMPT therapist. You do have to go through lots of levels and you have to complete lots of projects as you complete the PROMPT Institute. There's lots of research and in the back of the books here. Thank you very much.


Learn more about PWS research at FPWR's 2019 conference

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.