EP.16. Speech Delays, Expressive, Receptive, & Assistive Tech-Part 1

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 sign language, assistive technology, expressive language, receptive language, signs of language delays

Part 1 of 2.

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 first of two episodes where I am able to speak with a speech language pathologist and pose any question that we can think of. So I collected a whole group of questions, and I hope you're able to pick up some information and learn something in one of these episodes. 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. So today, we have a fantastic opportunity to learn some more about our kids and speech, we'll be speaking with Leonora Edwards, Chief Knowledge Officer of Better Speech, which is a company that we'll learn more about. And Lenora, you've got a lot of initials after your name, I'll let you explain those credentials to everybody.

Lenora Edwards: 1:33

Absolutely. Thank you so much for having me, Shannon, I'm so excited to be here with you. That is correct. My name is Lenora Edwards and I am the Chief Knowledge Officer with Better Speech. And we are an online speech therapy company. And we've been online for many years now. And as a speech language pathologist after my name, or her number of initials, and MS stands for Master of Science, because I graduated from a program that was a Masters of Science and CCC stands for a certificate of clinical competence. And after we graduate school, we have to become board certified to be a part of the American Speech Language Hearing Association. And when we sit for our boards, we then pass our boards and it means we've accomplished all these academic things that we were required to accomplish. And our C's are the big thing that we like to have, it means our Certificate of Clinical Competence that we are licensed and able to provide care and SLP stands for Speech Language Pathologist.

Shannon Chamberlin: 2:27

Fantastic. Oh, wow. And, yes, a whole lot. And we like that, you know, the more qualified you are before working with our children, the better it is for us as parents anyway. Absolutely. Thank you for explaining all of that. Now, have you or members of your staff had many clients who suffer from severe autism?

Lenora Edwards: 2:46

We have. And we actually work with a number of people within the community that experience autism. So we see individuals who you would consider would be mildly impaired where they're on the spectrum, they're actually able to effectively communicate and express their thoughts and they're able to follow commands and interact with you. And then we also work with individuals who are what we would consider severely impaired where they may be considered nonverbal, such as they may use a device to communicate or you'll have to anticipate what they want, and they'll communicate through their gestures and their expressions and other behaviors.

Shannon Chamberlin: 3:19

Okay, great. Do you... I guess we'll get to that a little later. I do have some questions on pairing up a speech therapist with a child or an adult, you also offer speech services to children and adults?

Unknown: 3:31

Yes, so with Better Speech, and as a clinician, we're able to provide speech therapy services to adults and two children. So sometimes you'll hear oh, my child has seen a speech therapist, but we absolutely do work with the adult population. So in our field, we actually work with little ones as early as being in the NICU. So if they're born with feeding difficulties, we absolutely work in that field for their swallowing and making sure that they're able to have adequate nutrition. Then we also work with people on their speech, such as their articulation, their voice, their fluency. We also work with language, which is actually two parts. Our ability to understand language is our receptive component. And our ability to express language is our expressive component of language. We also work with individuals on their memory, their cognitive thought processing, such as problem solving, reasoning, working through those simple to complex problems that may arise throughout their life, but also we'll see individuals who experience Alzheimer's or Parkinson's disease or dementia, we'll also see adults for swallowing our field is very, very big. So we're very proud to be able to provide care in a variety of settings with Better Speech which is so fantastic is that we are able to provide you that comprehensive care in an efficient and effective manner because we are online, we're able to be there with you, whether it's with a child or with an adult. We are in that space with you where you're most comfortable. So a lot of the time to go to a clinic, let's say an outpatient clinic or within the schools. As you're changing the environment, especially if it's after school to, and there's a, there's been a lot going on, you're now taking them from the school, you're going over to a clinic to have therapy and this appointment, which may only be 30 minutes can actually wrap up about two hours of your day between driving there, getting out of the car, making sure everything everybody's organized. And going into the clinic setting, you actually have a completely different little one that you're working with when that happens, because they've changed environments. And it's also on everybody else's time schedule, maybe not on their best time schedule, whereas with Better Speech, we are there in your home, on your time schedule.

Shannon Chamberlin: 5:38

Absolutely. I love all of that you're right on target with all of those problems. And you know, I'll be honest, it sounds like this level of involvement and a level of care is just so much more than we ever were given while my child was in school and receiving therapies. That's fantastic. There's so much that you have already mentioned that no one else seems to have ever thought of, as far as, you know, the speech therapists that are supplied through school and and then after. We waited - my son got kicked out of school when he was 17, and we waited three years to be contacted by someone to offer therapy to him - both, you know, physical and speech. Finally, now that we've got an opportunity to get some speech therapy for him, again, it is spaced out like one appointment a month. And you're right, you do have to travel, it's completely disruptive. And he doesn't have a chance to learn anything because of all the adjustments. So I really love all of those features that you just mentioned about your service. That's great.

Lenora Edwards: 6:39

Yeah, I'm proud of it.

Shannon Chamberlin: 6:41

You should be. A lot of our kids with severe autism actually suffer from multiple autoimmune disorders, seizures, and all kinds of different things. Have you found that those health issues affect speech development at all?

Lenora Edwards: 6:55

They absolutely can affect speech development. I can't specifically say because they have x, they will have y and indicate it that way. There are always things that can contribute to increased difficulty communicating. So whether it be a mild form of autism, or a severe form of autism, whether they may be having an autoimmune disease, especially because their system is constantly in fight and flight. And there's so many other factors going on. So when you're asking that little individual to participate in speech therapy, especially in an outpatient clinic, or in another setting, there's already a lot going on. So it's best to be able to help them when they're in the right space. So when they're feeling good when they're home, when they're comfortable, and really helping give them as much of a step up as much of an advantage to benefiting from that one on one therapy as possible. Especially when there's an autoimmune component or any type, even with the pandemic, you know, we're asking little ones to participate in speech therapy, at least in my state, I'm in the state of Pennsylvania, and in the clinic that's close to me, they're still wearing masks and shields, and they're still separating the parent and the Guardian and the child for speech therapy services. So there's a lot of things going on, plus, add a mask or a shield on top of it and asking them to focus and stay engaged. We're asking a lot of that person in that system to really engage in focus and hope that we can get the best of the best going and that there will be carryover. There's a lot of components that are needing to be in alignment for them to experience the maximum benefit of that one on one therapy. When you're at home, you're in that comfortable space, you're not combating a mask or shield, you're not re exposing your system or compromised system to other elements. We're giving them the advantage as much as possible to really benefit from those one on one sessions.

Shannon Chamberlin: 8:47

Yeah, I believe that you're right on target with that as well. We have really been feeling that anything outside of the home is really just a recipe for disaster lately, especially like you mentioned with COVID, and the you know, the masks and the shields and all the distractions. And I think you're absolutely right about that. I think that this whole idea of the therapist being in the home via Zoom is really the best way to go so far. I haven't heard anything better. So with these kids with autism and severe autism, I've noticed that many of our children - even if they're all - if you have a group of 10 kids who have severe autism, their language delays are different. What are some of the signs of speech and language delays? And at what age can we expect to start seeing those signs?

Lenora Edwards: 9:34

That's a great question. What are some signs of language development and what are some signs of delays? So when - and I often tell this just as a kind of a blanket statement to everybody whenever I hear people are pregnant, I say great! Start talking. Because that little baby is developing and there's so much going on and as advanced as our fields are for science and development and what we know that's going on There is still so much that we don't know. So when we're talking, when that baby's in the womb, they're actually hearing information. And that is a great thing. Now, once they come into the world, keep talking, because what you're doing, you now have this baby that's entered the world, and they have the ability to understand language, but they need the experience of language to make comprehension of it for it to build upon itself, which means our brains are designed to understand language, but there needs to be language going in for it to really have the benefit of this component of our brain. And as these other ones are growing, it's great to keep talking and explaining what you're doing, because they don't know anything about their environment. And they are only experiencing their environment through the language that we're offering. Now. That's our emotional language, our verbal language, everything that I'm doing right now, that's the expressive component of language, but there's so much else going on. And they'll even have experiences as they start to move around. And that's how they're understanding their world around them. And that's a great thing. When it comes to receptive language, when your babies are very young, before they start talking, what they're doing is they're listening. So when you pick them up out of a crib, you tell them, I'm going to pick you up, and we're gonna go sit in the tub, and we're going to turn the water on and really narrating or what some people like to refer to as sports casting, because you're explaining to them everything along the way. And that's a great thing, I'm going to put you in your highchair, and we're going to have some banana slices, and I cut them up small. And sometimes it can seem a bit much when you've never done it before. But really, these babies are listening. And we know for sure that they're following information to the best of their ability, and they're working to understand the world around them. So when your little ones start to grow more 18 months, 24 months, as you've now been talking to them throughout this period of time from birth, what you've also been doing is having this turn-taking, engaging with them socially, having this eye contact, making sure that you're showing them your face as you're talking because they've now started to understand, Oh, they're talking and as they're talking, they're also babbling, whether it's oooh oooh oooh oooh, or they're just stringing them Mum, Mum Mum stringing sounds together, that's then actually communicating that. So talking in their best ability to know how so as they continue a good rule of thumb, if they're one year old, you're going to start to hear one words, if they're two years old, and you're gonna start to hear two word combinations, if they're three year olds, they're gonna start to hear three word combinations, such as one, Ma, or a BA, for bottle, that's their approximation. For two, you might hear more, please, where's Mommy, their attempt at producing that. So that's building, when there's a delay, the things that you're going to notice is they might not be able to follow commands, such as show me your teddy bear point to the fish in the book, when you're reading, following those commands. And being able to identify information is really, really important. Because when we say, show me your teddy bear, or where's your cup, and they are working to understand what you're asking of them, and what is actually happening, not only are they working to understand, then they have to identify that information. So when you say where's your cup, where's your teddy bear, go find your shoes, you're giving them a command about something specific. And that's how you know that they're actually understanding the world around them, or when you call their name, or when you say no, no, Joey don't do that. They're understanding that you're talking to them and that they shouldn't be doing something or whether it was like, Yeah, good job, they understand that's okay to be doing that. So that those are definitely signs of a receptive language component. And then for an expressive when you're not hearing them babble or initiate - attempt to communicate with you. So some of the ones though babble or older ones, they'll babble. And that's them having that vocal leg. When they can't actually name something, such as let's say, you have a two year old and you've now been with your teddy bear your entire life, they're going to know the name of the teddy bear. And they're going to at least attempt to produce that name. If they're not attempting, that that's a sign of a delay. Or if they're not working to get your attention, if they're not pulling on your hand and bringing you over to a place to show you what they want. If they're not indicating with you this back and forth of we're playing with the same toy and I'm looking at you and I'm looking at the toy, that engagement, those are signs of a delay in that communication component in that language component.

Shannon Chamberlin: 14:38

Okay, that makes sense. That makes a lot of sense. And so with the engagement, we're - Did you say we're looking at about 24 months?

Lenora Edwards: 14:47

Absolutely. And even younger ones, you will see this joint attention. So let's even say you have your 12 month old sitting there and they're playing with a toy that pops up and things open and surprise them. They're looking at the toy, they're playing with the toy and then when something pops up, they're going to surprise and then they're going to look at you to see what your reaction is. That's that combined attention.

Shannon Chamberlin: 15:07

Mm hmm. Okay, yeah, that does sound familiar with lots of babies I've been in contact with. Do you think there's any connection between stress while in the womb and speech delays later in life?

Lenora Edwards: 15:20

I go on to say, Yes. I do personally think that there is a - I don't have a research article in front of me to say exactly here is, here's the one to quote. But yes, because what's happening when, when a woman is stressed in that environment, and that baby is also being stressed, everything that that mother experiences is actually being felt and experienced through that child, also, those cells are replicating and moving forward. And it's actually true. And if you study, you know, epi genetics, or if you study anything in the genetic realm, they are experiencing that it's not separate of that. it's an energy component. And there's so much going on in that area. So you know, even if you say, you know, a mother ended up getting sick, that baby also got sick, let's say they got the flu, that baby also experienced it in a fashion with her runny nose and a sore throat going on in that development, not necessarily for the baby that I can actually specifically speak of, but that baby is also experiencing that flu, because they are a part of the mother.

Shannon Chamberlin: 16:26

Is there any way to tell when you're working with someone to help them develop speech, whether their speech delay is related to some kind of trauma like that?

Lenora Edwards: 16:36

There are a lot of factors, you know, when we do a comprehensive evaluation, we do ask, what was your prenatal experience like? What was going on? And we do like to have that information. Even if it's, you know, a genetic information? Is there any family history of speech delay on your - on the male side, or on the female side? And it's more information, which is letting us know more information there possibilities? I would never professionally or personally look at somebody and say, Oh, you got the flu? Okay, that's exactly why... I would never do that. I don't know many clinicians have would ever really say that. It's just a contributing factor.

Shannon Chamberlin: 17:14

Okay. Yeah. There have been some interesting things happening in schools. When our child was young and in school, they wanted - he was speaking, he had, you know, I don't know, he had about 50 words. And the most he ever had was about 100 words, you know, but that was like when he was older. So I would say he had about, you know, 40 or 50 words in his vocabulary at the time when the school wanted him to start using assistive technology to speak for him. And we were very against that because we wanted him to keep talking. So that's half of my question. The other half is, there are other parents who have been trying to use sign language and learn sign language with their child to help them communicate. And those parents I've talked to have been told by the speech therapists that they do not want that happening, because it will delay their speech. So what do you think about that with assistive technology when a kid is somewhat able to talk, and then using sign language to help a child learn how to communicate when they're not really talking that well?

Lenora Edwards: 18:23

Those are both amazing questions. So when it comes to using a device, the nice thing with you that using a device is that it also supports expressive language. So it's not there to substitute and say, Okay, you're not verbal enough, so we're just going to completely abandon ship. And this is what we're going to do with a device, it supports more language. So they're actually getting opportunities, especially when they're using their device consistently. And that's the key to AAC devices is the consistent use of them, when they're using them and getting familiar with them and learning about them and playing with them. They're hearing more information, and they're hearing it on repeat. So they might hear that because they like juice, they then get to produce they might push the button juice 100 times a day, they're hearing the word juice 100 times a day. And when that happens, it's actually feeding that neural network of the receptive language, they're hearing it and then they can actually attempt to produce the word whether it's an attempt or clear production. From our clinical standpoint, an attempt is, they've attempted to say the word Versa clear production. If they say Ju, or juice, juice is the whole word, but their attempt was ju which is great, great thing because it's better than nothing. So that's why it's a it's an approximation. It's an attempt, that's a that's a full party to have. So with the device, some people will think that it's to replace their language, but it's actually in addition to support their language and it gives them more ability and more flexibility to... if they're not in the mood to be verbal today, which is entirely possible because they have the autonomy to decide if they want to speak. The nice thing with the device is they can still communicate, if they don't want to verbalize sometimes it can be really effortful, or it can be really frustrating for people to verbally communicate. So that device is really exciting because they now have another option, they have another outlet, which is awesome. What we also do say is that we can encourage language, encourage people to communicate, we cannot push them beyond their- beyond that individual being ready, or unwilling to want to talk. Or we can't force them. That's another one, whether you want to call it push or force, we can really support that language. But at the same time, they still have, they still need a certain skill set to effectively execute on that clear production of those words. But they also need to be desirable and wanting to actually verbally communicate. So that's where that fine balance does come in. So devices are are great in support. And they can be used together, not one or the other. So they hold hands, which is a great thing. And you had asked me about sign language. And I - there are people who do go back and forth on this. Some people will say no, because it will prevent them from producing verbal language. So everything that I'm doing is the verbal component. Verse sign language is considered a language of which it completely is. It's a different form, okay? So it's when you do when you decide to integrate both, the great thing is, is to integrate both, you can have sign language, and you can have that verbal. And again, it's offering them that option of if I don't want to be verbal right now, I can sign I can still communicate. That's the intention is to have that individual communicating, being able to express their wants and needs some specialty things like mild population of individuals who are experiencing autism, they can communicate their wants and needs. Some individuals who are on the severe or profound side of autism, we have to anticipate a lot we can follow their cues for wanting to let's say they want to want to play with their toy, their favorite rubber chicken, and they want to hold on to it all day. And we can follow their cues that they want this because when we remove it, they clearly aren't happy. That's anticipating that's understanding their language component when it comes to sign language to pair that sign. And that verbal component is a great combination, because those two both hold hands also.

Shannon Chamberlin: 22:23

Okay, fantastic. Thank you for that information. And that's about all the time we have for this episode. In the next episode, we'll talk about Apraxia and Mixed Receptive, Expressive Language Disorder and more. I know, if you're like me, the information that you just heard in this episode probably brought up a lot of feelings for you. And you know, there's a lot of struggle in our lives dealing with things like this and I just want to tell you to hang in there. You're a superhero.