Ep.17. Speech Apraxia, External Communication, Better Speech-Part 2

Parenting Severe Autism mom & podcast host Shannon Chamberlin talks with Speech Language Pathologist Lenora Edwards. Lenora Edwards is the Chief Knowledge Officer of Better Speech, an online speech therapy provider.
Lenora has invited listeners to "ask anything" about speech and severe autism. Shannon has put together a list of questions derived from her own curiosity and other parents in the severe autism world.

Subjects include Apraxia, External Communication,  Mixed Expressive/Receptive Language Disorder.

Part 2 of 2.

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Transcript

Shannon Chamberlin: 0:18

Hello and welcome to The Parenting Severe Autism Podcast. I am your host Shannon Chamberlin. I'm so happy that you're here with me today. This is the second half of my Ask a Speech Therapist Anything episode, where I am able to speak with a speech language pathologist and pose any question that we can think of, and I'm speaking with Leonora Edwards, speech language pathologist and Chief Knowledge Officer for better speech and online speech therapy provider. We'll talk about Apraxia and Mixed Receptive, Expressive Language Disorder and more. If you would prefer to read the transcript and you can't find the transcript on your hosting platform, you can always head over to psa.buzzsprout.com, where you'll find my transcripts, show notes, links to recommended products, and also some podcast merchandise. I've got some coffee cups, water bottles, and stickers and stuff like that available, if you'd like to support the podcast, or if you'd like to point someone else in this direction. You can also buy me a coffee. So let's get into this. Sometimes we know that our kids are suffering from pain, and we use a body sign language to figure it out. I did recently speak with a parent who uses this typical routine for a pain checkup. But it hasn't been working for one of her more severe children. Do you have any suggestions for helping our kids communicate pain if they're really having trouble communicating, anyway?

Lenora Edwards: 1:48

That's a great question, how to communicate, how are they communicating pain? I do like to approach each as individual. So parents, you all know your children best when it comes to that. So if there was something working, and now it's not, let's say, were they able to point before and now they're not able to point or are they using a visual literally like a picture of where's the pain, and now they're not consistently pointing, they're not consistently implementing it? What else is going on? So notice when they're feeling good, I'm a huge fan of writing things down, even if they're just they're really just little notes to help you remember from day to day, week to week, month to month, and it can go back even as okay, they were content today. Great. What did they eat today that they were content? What was their sleeping like that they were content? Who was around that they were content? Where were they that they were content, all those play a factor. Because sometimes it may be that a certain food is causing them discomfort, and it can feel like heartburn, it could feel like stomach cramping, it can feel like diarrhea, there's a lot of other factors that are going on, where if they can actually tell you that something that they drink really irritated them. So really monitoring their cues. And how else are they communicating pain or discomfort? Sometimes it might just be the environment that sensory wise, they're not okay, in whatever shirt it may be, whether it's a tag, or they didn't have enough compression on their body, there are other factors going into it. So I for one would definitely write things down notice when they are content notice when they are not and see what are the common threads that are arising and also going off of how do they like to best communicate, especially if they're uncomfortable, and they're in pain, they might not be super willing to use their device, they might not be very willing to really indicate beyond crying that they are uncomfortable.

Shannon Chamberlin: 3:48

Right.

Lenora Edwards: 3:48

So trying to backtrack and notice when they are okay. Does that make sense?

Shannon Chamberlin: 3:52

Okay. And yes. Any suggestions for... I mean, you mentioned it a couple times where they used to be able to communicate or even point and now he can't and or maybe the pain is just so bad, and the kid's so uncomfortable that he doesn't want to use the avenues that are available to communicate... with my child, for instance, I have to do a head to toe checkup. And I have to point to each part how is your head? How are your eyes? And your nose? And he'll tell me good or bad. Or sometimes he'll name one Splinter Cell and one Ghost Recon, which is really strange, but apparently one is good and one is bad. Let's say that those are not working. And we can't even get the cooperation for pointing to the body parts. Is there anything that you can think of that we

Lenora Edwards: 4:37

Anything external. Try to bring it could substitute? I know it kind of depends per kid on what they can relate to... Awesome. Yeah, I love that. Sometimes, you know, especially if you're outside of them whether you have a picture or a doll or a stuffed having somebody with a lot of heightened emotion, stick with it, but in a gentle way, especially when you're in that stressful environment. Because I know parent/guardian - you're animal, something that's familiar to them and familiar doing so much and you're trying to get there and you know, child enough that they're able to consistently understand, oh, of whatever age there's, so your child is getting really, really this is what I use to express myself, this is my friend that frustrated, they may take the stuffed animal and send it will help me. When you take it off of their body, especially if sailing across the room, which is possible. D o your best to really take breaths, and really allow yourself to manage your stress and then come back to the situation with the toy. Because sometimes there's so much stress going on in the room, or between that between the two, that it's a lot like pushing on a door you're doing a head to toe assessment, it might be that says pull. You can push as much as you want, but that door that says pull isn't going to budge. When you can calm down. And really just allow yourself to take a few breaths, change the tone of your voice. I know for sure I get those shouting overwhelming to their system, because now you're asking, moments, when you can breathe, and go softer, even as soft as I'm talking now. When you can change that, you gain more control over your nervous system, and over their nervous system. Because you're going to help regulate them down, especially little ones or anyone on the spectrum, their energy is they're in pain, and now we're trying to figure out where the so much higher, and there's so many things going on. When you can control theirs, they can't always control theirs. When you can control yours, you will naturally energetically sync up to theirs in time.

Shannon Chamberlin: 7:17

Yes. I completely agree with that. pain is, and emotions are rising quickly. And it's frustrating That's a really good point. Yeah, that makes a lot of sense. And that's something that a lot of us in this world every day all the time tend to forget about, so that's a really good reminder as well. Are you familiar with Apraxia?

Lenora Edwards: 7:32

I am familiar with Apraxia -apraxia of speech or sometimes they refer to it as AOS or CAS as childhood apraxia for them, and it's definitely frustrating for people who are of speech. Absolutely.

Shannon Chamberlin: 7:42

What is it? And is there a connection between the delays that we experience in autism?

Lenora Edwards: 7:47

Absolutely. So when it comes to apraxia, it's not a weakness. Sometimes with individuals who experience autism, they quite literally may have oral motor weakness, weakness, so that lips up the tongue of the jaw, that is what trying to to help. And now there's so much stress in the we refer to as dysarthria. When there is a musculature, weakness, that's dysarthria when it comes to apraxia of speech, it is actually a neuro network difficulty. So what happens is the brain knows what it wants to say, but once the brain knows system that they can't communicate effectively. Try and what it wants to say, it actually has to go through a motor planning sequence to effectively clearly execute on those sounds on those words, on that breath. There's a lot going on that is happening as we're talking that we don't actually think all that much in detail about. We're usually thinking bring it outside and have them focus on whether it's picture a about what I want to say, not specifically, how am I going to organize the words to get this message out? When it comes to apraxia, it's a neural network execution, the brain has to communicate to the muscles in a certain sequence. And when with individuals with apraxia, they will attempt to say the word cat and they will say cat and then they'll say, stuffed animal, have them focus and say, Okay, you show me and Okay, say it again. And it may come at hat, or it may come out bat, or it may come out Gog, it'll be completely different. And that is the because the sequencing is not always consistent. It's not as consistent and clear as it is right now as I'm talking. With apraxia, we're asking them to produce the same sound, and they're having difficulty see if they can point or if they can indicate to you in some way, producing the same sound or the same word. And that's because the brain cannot consistently communicate to the muscles.

Shannon Chamberlin: 9:23

Okay, I - you know, we never knew that, and now I can definitely say that that has happened with our son for sure. Very interesting. And then, is that some - does shape or form that this is what's bothering them, that that change the route of the therapy? Does that change the way that you do the speech therapy, or is it just kind of part of everything? Yes, when it comes to apraxia of speech, it's definitely Okay. Okay. And when you are doing your something you want to take into consideration because our traditional - let's say I was working on the the sound with a assessment of your client, and they are suffering from apraxia, child and I was doing articulation for the letter B. I might be really helpful. can drill them and go, "Be By Bo Boo", and they can follow me,"Be By Bo..." They can hit that production consistently. When it comes to apraxia, because it's an organization of the musculature and that network component, we approach it, as clinicians, we approach it differently. So there is definitely a component that when we're creating that treatment of care, or that plan of care, we take that into consideration because it is something we absolutely have to take into consideration, because my traditional approach for Artic will not work with that individual. is that something you are able to find out through zooms?

Lenora Edwards: 10:38

Absolutely.

Shannon Chamberlin: 10:39

Okay. So it doesn't need to be pre-diagnosed or anything? Okay, awesome.

Lenora Edwards: 10:44

No. As clinicians, especially with Better Speech, we have access to our assessments that are online. So when it comes to speech therapy online, the great thing is, is that like I said, we're there right in your home, we also have complete access to providing that comprehensive evaluation. So when I work with an individual, let's say, I have a five year old, and parents are concerned for a language delay, because the parent is there, they're able to tell me what they've been experiencing, they know their child best. So I'm able to ask them a variety of questions of, okay, can they do this? How are they doing this? What does this look like? Let's ask little Joey to go and grab...Let's go find your shoes. Joey, can you go find your shoes for me? And as he's going to find his shoes, we will then know if he can follow the command, we will know if he was able to consistently go there and complete the command and come back in an appropriate amount of time, or did he get sidetracked and lost in another room? So there's a lot of things that we can actually assess just from our interaction with the parent, and especially from our interaction with the child, how are they able to communicate with somebody who is new to them, and building that rapport is really, really important, especially because, you know, sometimes you'll go to an outpatient clinic or whomever you're working with an adult, we know this a lot of the time, that first doctor that I worked with, might not be my primary care physician, I may not have had a good rapport with that person, it's important to allow rapport to build with the clinician that you're working with, especially with your child and allowing, making sure that as the parent, you have a good understanding of your clinician, and that you're able to converse back and forth, and the lines of communication are open. Also, as that child - are they able to relate to that clinician, can that clinician engage them and really have that communication so that everyone is benefiting from speech therapy services? The great thing with Better Speech is mom, parent, guardian, dad, grandma, grandpa, whomever, can be there with you. And because you have support with that little one, because there is an adult there, that child knows that they are cared about that child knows that they are seen, they are heard, and that they are important. Sometimes when you get that separation, or if you're in a different environment, that child doesn't necessarily get to feel that. Because our platform works on your schedule, in the comfort of your own home, and we're across the nation we are throughout the US. And we're also international, children all over the world are able to understand this is important. It's important that I communicate. And it's I'm important because people are here for me. And when we have that approach, that parent, clinician, child approach, all three plus people coming together, the gains these children are making, these gains that other people are making are massive, massive.

Shannon Chamberlin: 13:38

That's really encouraging. I love that. I do have a question from another parent about Mixed Those are all of the most troublesome things for us, as parents of these kids is, you know, all of that, you know, were removed when we shouldn't be and they don't feel Expressive Receptive Language Disorder. The parent has been supported. They don't feel loved, seen and heard. And and that's really really important, I believe, to their development trying to Google and find out everything that that she needs as well. So it's so nice to hear you address that without me even having to ask. That just shows that it's first and foremost, to but she's not finding great information. Is there any and that's really important. insight that you have? What is it, how can we address it? Can you guys help with Better Speech?

Lenora Edwards: 14:25

Completely. So mixed receptive and expressive means that there's two parts to it. So not only is there difficulty understanding language, there is difficulty expressing language. So that's why they call it mixed because it's not just one or the other. It happens to be combined. And when you're working with a clinician, especially at Better Speech, we're able to have more information so when it comes to that, you do want to work with somebody who is very comfortable working with children and I - there there are absolutely clinicians who are exceptional at working with adults and who are absolutely exceptional working with children. And that's a great thing. And if you reach out to us, we offer a free 15 minute consultation on our website, simply go to the website Betterspeech.com, and a little bubble will pop up. And we can connect you with a live person, which is truly so incredibly important. But we can connect you with a speech language pathologist, we're able to answer those questions for you. And then as early as the very next day, we can get you connected with a clinician who feels really comfortable in working with an individual with mixed receptive or expressive language disorder before anybody. We do have that availability, we are over 150 therapists strong. What that means is we are all licensed by the American Speech Language Hearing Association. And then we are licensed by the state. So for example, I live in the state of Pennsylvania, but I am licensed in five states. Because of that, I'm able to help more people. And I'm able to work with way more people than I would have ever been able to work with in a clinic, I would have never worked with a client in Colorado, or I wouldn't have clients in Florida, if I was only licensed in one state and in my local area. So that's a great thing about Better Speech. When you work with your clinician, be open and honest. And say, you know, here are my concerns. I have background information that has shared with me that that my child is experiencing mixed receptive and expressive language difficulties, please let me know if you feel comfortable working with an individual like that. I'm somebody who feels very, very open and sharing, this is what I'm looking for. It's not personal, it's professional. And if you as the parent as the guardian, you are the advocate for your child. So be sure to ask, do you feel comfortable? And that is opening the doorway that says, Yes, I am or you know what, we have a better fit for somebody who was really comfortable with this. Let me get in touch with them. And that's kind of a blanket statement for healthcare anywhere,

Shannon Chamberlin: 16:54

Right... So you don't think that... Well, let's say, you know, I'm dealing with a child who is suffering from the mixed receptive and expressive language disorder, everything's looking pretty bleak out here. You know, the medical professionals around me are not offering much to go on and... am I to feel that this is a lost cause? Or if I were to work with you guys at Better Speech, would would my child receive the time that is required to help him with that?

Lenora Edwards: 17:23

Absolutely. That's a great question. Especially if you're not feeling like the community around you, physically is able to help you. The - our community is incredibly vast and wide. So please reach out to us at better speech. And we will do our very best to offer you more guidance. Always keep gathering information. I do find doing the research is really helpful, because it better helps me know what I'm working with, it then gives me more knowledge, the more knowledge I have, the better I'm able to decide if it's a good fit for me, or if it's not a good fit for me. So again, that's kind of a blanket general health statement from that standpoint. But absolutely, if you do have concerns for any reason, and you would like to speak with a professional, reach out to us at Better Speech, and we will do our best to guide you and answer those questions. And you can determine if you do want to proceed session by session, or if you would like just an evaluation or if you would say, You know what, absolutely sign me up for the month. And we're just going to keep going until our speech goals are met. Our platform offers massive variety and massive flexibility. So we have the ability to say you only want to work session by session, that's perfectly fine. That is the best plan for you. This is what we recommend... as an ethical clinician that has a code of ethics, if I do think two times a week is warranted, I will say I do think two times a week is warranted. You, as the parent/guardian/health care provider have the ultimate say in what actually happens. So you can say you know what, I want to just work one time a week for now. And we'll see how it goes. Great. We can do that too. It is very, very much on your schedule and on what is flexible and convenient and effective for you.

Shannon Chamberlin: 19:03

Okay, and then you do feel that there are people on your team who can deal with this mixed disorder?

Lenora Edwards: 19:09

Absolutely.

Shannon Chamberlin: 19:10

Okay.

Lenora Edwards: 19:10

Absolutely.

Shannon Chamberlin: 19:10

Fantastic. Now, if they're school-aged, and they're not receiving the type of speech therapy that they need, or they're not receiving enough time and things like that, are we able to incorporate services from better speech into the IEP or the education plan somehow? Are we able to say,

Lenora Edwards: 19:29

That's a great question.

Shannon Chamberlin: 19:30

Okay.

Lenora Edwards: 19:31

From my understanding, when it comes to IEP s, they are based within the school system. So if the IEP says - the individualized educational plan, just in case anybody wasn't sure what an IEP stood for - we within the school, we are able to provide you 30 minutes one time a week. If you don't feel like that is enough speech therapy for your child, you as the parent or guardian have the ultimate right to say, Okay, I do think that they need two times a week and the school may come back and they say okay, well right now, we don't necessarily think he needs that because there is a balance. So now you as the parent or guardian can actually go anywhere you'd like, you're always welcome to come to Better Speech and have additional services provided for. With that, when it comes to the services that we provide, we offer you what we refer to as a super bill, which means we provide you with the documentation that is necessary for you to then be able to go to your insurance company and ensure those services are provided and covered. Because it has the required information, the our diagnosis codes and a therapy plan, your insurance company will want to see that. Now, as you're working with your school system, you may say to your school speech pathologist, here's what they're working on with the other speech therapist at Better Speech, and you actually have the ability to print out those notes and pass them along, because you have ultimate say over your health care.

Shannon Chamberlin: 20:52

A lot of our kids are on disability, Supplemental Security disability. And so that means state Medicaid, do you know whether that state Medicaid program covers any of the costs of your services? Or have you ever known about any disability or Medicaid vouchers that you normally would recommend a parent pursue for this service?

Lenora Edwards: 21:13

That's a great question about Medicaid. When it comes to Medicaid, we do not directly work with Medicaid, but we do have financial assistance available. So in that fashion, you can then reach out to your network on your financial component and see what else is possible.

Shannon Chamberlin: 21:27

Okay, do you have a range of you know, if we were to say, well, school's not helping, nobody's helping, I'm gonna have to pursue this on my own... Is there a minimum to maximum price range that we could expect?

Lenora Edwards: 21:39

Absolutely. For 30 minutes, if you were just going session by session, it's only $80. And then if you were going for the entire month, so let's say one time a week for 30 minutes, I believe it's 260, which is way more affordable than the co-pay that you would have every time you entered the clinic, but also the fact that we do work to make it as affordable as possible. And we offer that financial assistance when possible. That's our goal at Better Speech. Effective, convenient, and affordable.

Shannon Chamberlin: 22:07

Okay, we love that. How can listeners contact you for services? And are we able to provide a discount code?

Lenora Edwards: 22:14

That is a great question, thank you so much for that you can simply visit us at betterspeech.com. And we can get you started immediately as early as the next day. And there isn't a specific discount code. But we do have specials, I believe there's a savings for the first session that you can actually start it is posted on our website, we do like to change things up. And you can definitely find that pop up on our website at betterspeech.com.

Shannon Chamberlin: 22:37

Good. Yeah, that's really nice to start out with a discount. Since we have just a few minutes left, I was wondering, have you ever had a client with autism suddenly lose the vocabulary that he had been working on all his life? That happened to our son, so that's why I'm asking and - have you ever experienced that with a child? And if so, what in the world is that? And can we prevent it?

Lenora Edwards: 23:00

That is a great question. So I have experienced individuals who had vocabulary and that vocabulary kind of went away for a while whether it was brief while or a long while I have experienced that. And that can be very frustrating. Very frustrating for the child, and it can be very frustrating for the family and friends that are around them that really had a great understanding of how they were communicating. In terms of prevention, that is a phenomenal question. And I would say it would be on a case by case component. Sometimes there are other neurological things that are occurring, some little ones, maybe having seizures and strokes. And you know, there's so many other things that are going on at that time that there are times where our technology - as advanced as it is - can't pick up every little thing that interrupted the system. So from that standpoint, I do empathize with you on that I'm sure that was very, very difficult to experience.

Shannon Chamberlin: 23:50

Yes, yes, it actually lasted for... Well, it started when he was 15. And he's just about to turn 22. And he just now started getting some speech back.

Lenora Edwards: 24:00

Wow.

Shannon Chamberlin: 24:00

So yeah,

Lenora Edwards: 24:01

That's exciting.

Shannon Chamberlin: 24:02

It is I'm very excited. He's, he's really lazy in his speech. He knows how to say words, but he'll mess with the words.,I think just for entertainment? Right now he keeps telling me I want to go nenyuh. And that's supposed to be upstairs and he used to say uppedah stairs, and now it's nenyuh. So that's really annoying. That - Do you think sometimes these kids they just play with words and sounds and they don't really think they're important?

Lenora Edwards: 24:26

They may play with words and sounds, especially depending on their sense of humor, they might find it very, very funny to them when it might be very frustrating to other listeners. So it can be a humor component, or it can be a complete word, word change. And that is the new way of saying upstairs.

Shannon Chamberlin: 24:42

Right. Yeah, I think there's a little bit of all that and sometimes he's really cute. He'll say, oh, a word accident!

Lenora Edwards: 24:48

Yeah. See?

Shannon Chamberlin: 24:49

Well, Lenora, thank you so much, first and foremost, for reaching out to me. I'm so glad to have had this opportunity to speak with you. I know the parents are going to love all of the information you've provided. I hope that were able to get some of these kids hooked up with your services. Because I think that if I can get my son involved with Better Speech services from you guys, he's going to be so much better off. And I'm really optimistic you guys sound like you're really awesome and just all inclusive. So yeah, thank you so much. And

Lenora Edwards: 25:16

Thank you so much for having me. It was a pleasure talking with you.

Shannon Chamberlin: 25:19

My pleasure as well... And I've been taking a lot of notes during the editing of this episode, and I see in my future an episode with feedback as it relates to real life. On a more personal note, I have seen that my episode about preserving our mental health has been being downloaded a lot in the past week or so. And today is December 18. So it's that time of year, and all I can imagine is that everybody's families are driving them absolutely nuts, or that the loss of opportunity, and the missed opportunities that are now a part of our everyday lives is just bringing everybody down. There's a lot of things we can't do anymore because of the severe autism, right? So I understand that. We recently had - just a month ago - our son had all of his wisdom teeth taken out because he was complaining of pain in his lower left teeth. And the dentist says, Oh, well, it's the wisdom teeth. And so he's been healing up for almost a full month, tomorrow is a full month, and I have to clean his teeth every day until we're sure that we're in the clear, you know, and then maybe he can start attempting to brush his own teeth again. But I've been having to do the brushing and the flushing of these wounds sites. And the past couple of days he started complaining that his bottom left teeth are hurting. And I just can't believe it. So I get in there and I thought well, maybe I should floss his teeth. And that was a nightmare. I have this great floss and for some reason, just the very first time I decided to floss my severely autistic kid's teeth with this floss, it just goes to hell. It's completely frayed and messed up and knotted in his mouth. All I was doing was trying to floss and see if he had some food stuck in his teeth. What a nightmare. So that took about 30 minutes. And then I finally got it out. And I started looking at his teeth because he said they still hurt and I found - two teeth away from the surgical site, there's a tooth with the surface of it knicked. It's missing an entire piece of tooth and immediately my conspiracy theory mind goes to oh, they did that at the dentist's office? Or maybe they did that during surgery. Why on Earth would they have a Dremel-type machine during surgery? Of course they would not, right? But that's what I'm thinking. And then I started thinking, you know what? It's the same area! What if the dentist just completely missed this marred up tooth and had us go through surgery for no frickin reason?!? So now tomorrow's Monday, I have to call the dentist, get an appointment for some x rays. And I'm going to demand to see the X rays that they took the first time when they recommended we go get his teeth surgically removed. And if there's a way to see that marring on that tooth in the X ray, then I'm going to compare x rays because I have a feeling that this didn't just happen in the past couple of days. He's still eating mush. I mean, there's just no way, I don't think , that this would have happened anyway. Also, his birthday is tomorrow. It's December 19. He'll be 22 years old. And as you know, his family members missed the big 21 last year. And we've been trying to make this great birthday plan for this year. We try to change it up every year. He has certain things that he has to have done all the time. Like we have to bake him a white cake and a chocolate cake separately on the same day. Little things like that. But he knows it's an important day for all of us. And he's been really looking forward to it. On Friday morning, his dad tested positive for COVID. We've gone three years with nobody having COVID. Now, during the time that our kid is healing up from surgery, and we're planning for his birthday, his dad gets COVID and we're just dead in the water so to speak on that. We don't really have a plan now because we don't know how his dad is going to feel day to day. We were going to a hotel so that he could swim, that was the big plan, and just let him party down and have his gluten free pizza and cakes and all that stuff and go swimming. And celebrate his birthday, and that grandmother of his that I've told you about - just because my spouse didn't answer the phone when she called because he has COVID and he's in bed, she immediately calls my spouse's dad whose home we live in to get permission to come over and see our kid tomorrow morning at 10am or so. It's - I don't know if I even have to explain how ridiculous that is. I mean, I'm trying to take care of someone who's sick. I have a dog, I have a kid, I gotta feed breakfast to the other the two kids and I got to take care of my man and you're talking about right around my kid's eating time. He's been sleeping in, this is the time when he's gonna have to eat and so yes, we're doing dealing with it too. Even though we don't celebrate Christmas anymore, we still get the mind-numbing bullshit from outside family. Just wanted to let you know that stuff really does happen to other people. It's not just you. Hang in there. You're a superhero.