Greatest Hits - Learning and Development in Individuals with Down Syndrome

This summer, we're revisiting some of Hina and Marla's greatest hits from the first 10 seasons of The LowDOWN. This week we go all the way back to the beginning! In the first ever episode of The LowDOWN: A Down Syndrome Podcast, Dr. Susan Fawcett gives us the lowdown on learning and development in individuals with Down Syndrome.

Transcript

Today on the Lowdown The Down Syndrome podcast. Susan Fawcett, gives us the lowdown on learning and development. Over to you, Hina and Marla. Thanks, Andrew. I'm Marla, an SLP here at the Down Syndrome Resource Foundation. And with me is my wonderful colleague Hina. Hi, everybody. My name is Hina. I am the senior occupational therapist here at the Down Syndrome Resource Foundation. Marla and I are excited and proud to be part of The Lowdown podcast, and are looking forward to bringing you some amazing content featuring guests that are knowledgeable in all areas related to down syndrome. As therapists and teachers, we have the opportunity to work with and support individuals with down syndrome and their families on a daily basis, and this allows us to recognize their strengths and challenges, appreciate their motivations and interests, and really figure out how we can help them reach their full potential. Many parents, caregivers, and educators aren't aware of the strengths and challenges faced by individuals with down syndrome, which makes it difficult to know how to support them in all areas of life. We also see when we go and present at schools and collaborate with teachers and c.a.s. Marla, I'm sure you would agree that many are not aware of the specific learning profile of an individual with down syndrome and how these factors can really affect their learning. So for us as therapists and teachers, this is a really important topic because in order to help our individuals with down syndrome become more successful in all areas of life and to build those important independent skills, we need to first understand how they learn. And this is why I'm so excited to have our guest join us today. Today we will be chatting with Doctor Susan Fawcett, Director of Therapy, Behavior and Family Support at the DSRF. She will give us the lowdown of the learning profiles we can expect for students with down syndrome, and what parents and supporters can do to facilitate learning. Susan has been the head speech language pathologist at the DSRF since 2003, and has helped develop the Speech and language adult and summer programs during that time. She recently obtained her doctorate degree at UBC. Nice job Susan. And is now back with the DSRF in her new role, Susan has a particular interest in the areas of social communication, mental health, and problem behavior in people with down syndrome. Hi Susan, we're so happy to have you here as our first guest of The Lowdown podcast. Oh, well, thank you very much. I'm very excited to be here. Great. Well, before we get into our topic for the day, we thought it would be fun for our listeners to get to know you a bit better. Marla and I know you quite well already, but for our listeners out there, we thought it would be fun to go through our five secret questions to ask. Is that all right? Uh. Secret question? Sure. Why not? Okay. Okay, so. Marla and I will tag team on this one. Um, what are you currently reading? Oh, what am I currently reading? Oh, gosh, I can't even remember now. That's totally fine. I mean, you've had a lot on your plate recently. Is there a book that you recently read that you would recommend? You know what? Actually, I just read was there's a physician from the UK, um, known as, uh, I think his name is Doctor Rangan Chatterjee, and he, um, has a couple of books, the Four Pillar Plan and the Stress Solution. And they have these, like, really accessible, like Ways to De-stress Yourself, which of course was very, very, very, uh, important while I was doing my PhD. So that was that was one book that I've recently read. Awesome. Love it. And then my other books are all tend to be like textbooks. So, you know, they're not really that interesting for the general public, I don't think. Fair enough. Fair enough. What is your favorite thing to do on a rainy day? Well, I would like to just snuggle with my pug and my cat on a rainy day. Yeah, that's my favorite thing. Yeah. Well, they are adorable, so I understand that completely. What would be your favorite dessert? Ooh, my favorite dessert. Ooh, that could take up this whole podcast. Uh, well, um, I really enjoy, uh, anything from Ernest Ice cream. I think it's all very delicious. And I'm very glad that none of their stores are exceptionally close to my house, because otherwise I would probably live there with. With fair reason. Yeah, this is one of my favorite questions. What is your favorite brunch food? Okay, so I almost always, without fail at brunch, will order eggs Benedict of some kind with, uh, the hollandaise sauce on the side because, you know, sometimes they put a bit too much on it, but, um. But I do love a good eggs, Benny, for sure. All right. And our last question for you is if you could choose any animal to describe your personality, what animal would that be and why? Well, you guys know this already. We do? Yes. I would be an orangutan because I'm silly. And that's just. That's really the only answer there. Yeah, and quite smart because orangutans are very smart. Oh, okay. Okay. Thanks, Hina. That's that's nice of you to add that in. Yeah. Well, I think now all of our listeners will feel like they know you just that much better. Oh, great. Very nice answers. Thank you. Um, now, if we will get into the more interviewee serious side of things. Susan, you've kind of made a career out of working with people with down syndrome for almost 16 years now. And could you tell us a little bit about how that journey began? Sure. So, you know, my whole life I've honestly gravitated towards people with developmental disabilities and in particular people with down syndrome. Um, you know, for example, I was a peer tutor with kids with developmental disabilities in high school when I was doing my, um, undergrad and speech therapy degrees. I worked on the side in group homes with adults with developmental disabilities. Um, so it really has never been a secret that this would be my career path. And then in terms of how I started at DSRF, I had a practicum in my master's degree with the center for ability, and I she, one of my supervisors, brought me to Dsr's for a visit, and at the time, they didn't have any therapists or teachers or anything. It was just sort of a resource center. Um, and I just told her at that time, I'm like, well, I'm going to work here, I want to have a job here. And she was like, well, you you can't work here. They don't hire speech therapists. But, you know, 17 later, years later, here we are. So yeah, that's about it. And honestly, as I say, it's still the best job ever. I agree with you completely. Yeah, yeah. So when you talk about profiles of learning and development for individuals with down syndrome, what exactly do you mean? Yeah, ultimately we're talking about a way to help frame our approach to teaching people with down syndrome with the aligns with the way they learn best. So we want to be fully aware of all the challenges so that we can address them in a timely manner. So for example, for some, if it's a medical issue or so that we have quite reasonable expectations with respect to their developmental challenges. And so also on the strength side, the more aware we are of the child's learning strengths, style, preferences, motivations, the better prepared we are to provide appropriate and effective intervention. So in terms of the challenges some of our kiddos experience. Can you expand on that a little bit? Absolutely. So I kind of like to categorize the challenges into two broad categories. So there's medical issues. And then there's also kind of general developmental issues. So in terms of medical issues, um, you know, keep in mind that all of these that I'm about to list and this isn't an exhaustive list by any means, um, but all of them you can imagine have implications for learning and behavior. And so, uh, starting really early on, kids with down syndrome, there may be heart issues at birth. Um, there's definitely very often things like vision or hearing problems, ear or respiratory infections, um, nutritional deficiencies or gastrointestinal issues such as celiac disease or gastroesophageal reflux disorder. Uh, dental problems are really common. It's really important for kids with down syndrome to have regular blood work, because there can be things like anemia or low iron, um, thyroid abnormalities, high red or white cell counts. Uh atlantoaxial. Instability is another issue we see sometimes. So that's, you know, too much movement between two of the vertebrae in the cervical portion of the neck, um, the spine. And a really high percentage of people with down syndrome have sleep disorders. And the most common one is sleep apnea. And so it's really widely recommended now. Or it should be by pediatricians that all kids are tested via a polysomnogram test by age four. So that's just some of the the medical issues. And then in terms of the developmental or learning challenges. So I just want to preface this by saying that a lot of this really great work on the developmental challenges and the learning style of people with down syndrome comes from the research by Doctor Deborah Fidler at the University of Colorado, as well as Doctor Jennifer Wishart from the UK, the University of Edinburgh. But pretty much every developmental area that you can have as a human being is a delayed and or disordered due to the extra chromosome and down syndrome. Um, and these include cognitive skills like attention and memory, especially auditory memory. Um, lower motivation, sort of intrinsic motivation, motor skills due to low muscle tone and lower strength. And Hannah, Something I learned from you. The fact that it just takes more energy for these kids to sit, you know, to to do everything because, you know, they it takes more energy for them to keep their bodies upright. Um, and communication skills. So especially speech, pronunciation, expressive language, you know, saying long sentences, social communication skills such as initiating or maintaining conversation can be really tough. And then lastly, in this kind of category, we have behavioral differences. So we know that kids with down syndrome. And when I say kids I basically mean, you know, teens and adults as well. Yeah. Um, you know, most people with down syndrome will be less likely to stick with tasks when they are given a task to do. And that really doesn't even depend on, you know, you might think that that might just be a hard task, but actually, even easy tasks, they're less likely to stick all the way through, um, and they're more likely to engage in off task behavior. So that can be, um, cute, silly, charming type behavior, which we're all very familiar with at Dsph and will not be a surprise to any parents. Um, they tend to have major difficulty transitioning from one activity to the next. That's why we see a lot of, you know, parades when leaving Dsph, because they're going from this really fun therapy or educational session back to a boring car ride with their parents, right? And I mean, I'm not saying parents aren't fun, but let's face it, the therapy sessions are really fun. Um, so, you know, we we end up having to put a lot of work into as therapists, teachers and parents end up having to put a lot of work into getting these guys to transition from one activity to the next. Um, and contrary to popular belief, you know, kids with down syndrome do have problem behavior, and that comes as a surprise to some professionals in particular, um, who, you know, associate behavior problems with a diagnosis of autism, for example. But, um, it's definitely really common for kids with down syndrome to have behavioral difficulties that limit their ability to learn. So, you know, noncompliance, um, sitting down and refusing to move anywhere and wandering away from adults. Those are the three probably most common ones that we see. Mhm. And just in terms of the challenges, the last thing I'll say is that it's very important for us to have a really firm grasp of the challenges, because it helps us understand the reason why kids are engaging in these problem behaviors, or they're not learning as quickly as we might expect. Um, it's a much healthier, productive mindset or Perspective than simply attributing these things to laziness or stubbornness, which definitely we hear a lot. You do. I'm so glad you mentioned that, Susan, because I was just going to bring that up. In terms of what would you say when people say, I think my child is just being lazy, or I think the student is just being lazy, and this really helps us to reframe that thought into what, what's behind that behavior that you're seeing there. Yeah. Because those sit down strikes in particular can be misconstrued as laziness if you don't understand what's going on behind them. Yeah, yeah. And there could be 1,000,001 reasons behind why a child is sitting there and not moving, right? There's I mean, there's a ton of different ones. And you could pick anything from that or a bunch of things from that list we just went through. Right. Yeah. Also, I think it's important you listed some of the medical conditions because how an individual with down syndrome functions throughout their day is really impacted by how they're feeling, and this can change from day to day. And I know in so many of my conversations with teachers and seniors and even parents, I asked them to reflect on how their student or child is feeling that particular day. Did they get enough sleep? Do they have an ear infection? Is that why they're not listening to instructions or following through? It really all contributes to how they're functioning in their day. Absolutely. So how much variation can one expect between two individuals with down syndrome? I mean, taking into consideration their social environment, physical and mental health factors. Can you speak to that a little bit? Yeah. So, um, I would say I mean, first of all, I'm really glad you're asking that question because there's a tremendous amount of individual variability. Um, I think it's partially what makes our job so fun, you know, because we get lots of different characters coming to see us. And so, you know, keeping in mind that there's variability first in personality within people with down syndrome, just like there is, you know, in the rest of us. Right. So if you think about even within your own family, think of all the things that make each of us different from one one another. And then you also layer in the variability and intellectual functioning. So there's a wide variability from kind of low average all the way to, you know, a profound intellectual disability. Um, most kids and adults with down syndrome will fall in that kind of mild to moderate range of intellectual disability. But even within that there's a wide range of abilities and that sort of thing. Um, you mentioned the social environment. So definitely the child's home and school surroundings play a big role in how they develop, um, kids environments that are rich with learning opportunities and stimulation may fare better in development of a wide variety of skills, but another child might be overstimulated in that kind of environment. Right. And could actually benefit from a pared down kind of environment. So definitely a lot of variability there with the physical factors. You know, some kids get lucky and they have just a few of those medical challenges that I talked about and other kids get, you know, they're less lucky. And they they have lots of them. And then, um, with the mental health, a significant proportion of people with down syndrome, um, have some issues with mental health, and that's more than the typical population. So some people with down syndrome when they're younger may be additionally diagnosed with things like autism or ADHD, spectrum disorder or depression, anxiety or OCD, maybe when they're older. Yeah. And just as an example about I was just going to give you an example of when I was thinking about individual variability. Um, so, for example, you know, I've seen at this point in my career, I've seen quite a few five year old boys with down syndrome. Right. But not one of them is like the next. So, you know, I could I might have one who's working on building longer sentences and saying a clearer l sound and improving reading and other school readiness skills. Um, maybe even some early conversation skills. Um, maybe that kid sits at the table for 15 minutes at a time, which, you know, is quite a long time for a child with down syndrome that age. Hmm. Um, and we'll do almost every activity I put in front of him. Maybe his health has been great. Um, his parents are confident in their parenting skills, and things are really going rather swimmingly, all things considered. Yeah. And then, you know, that's my morning appointment and then my after lunch appointment is another five year old boy with down syndrome, where we're working on joint attention, you know, sharing an enjoyment of a toy or a game together. You know, maybe some single word sign language. Maybe I have to host lengthy dance parties, um, with Bruno Mars playing just to get keep them engaged. Right. And in the therapy room. Um, maybe that kid is not sleeping. He's not eating adequate amounts. He's just been diagnosed with autism along with having down syndrome. Maybe his mom is super stressed and really worried about her kid. And, you know, a lot of the session maybe me spent. I'm basically listening to her and providing her some reassurance and some positive reinforcement with respect to her parenting efforts, um, as well as giving her manageable amounts of information and coaching. So, you know, and we definitely, you know, you guys are nodding like we see a lot of this variability at Dsph for sure. Yeah. So Susan, how can having an additional diagnosis change the learning profile of down syndrome. I mean, this is a topic that can be its own podcast episode, but what are your thoughts on that? Yeah, it is a pretty big other topic for sure. Um, but additional diagnoses in general definitely impact the learning profile. So for example, a child with autism spectrum disorder, if they have that dual, that particular dual diagnosis, they they may be less socially motivated than a child with down syndrome alone. Um, will likely be more challenging behavior in a newly diagnosed child, right? So, um, for example, they have less expressive language, which may mean they have more expression via throwing or hitting if they don't want something or more of what we call automatic reinforcement or self-stimulatory behaviors, um, like twirling or flapping objects. Rocking your body back and forth. Uh, we know, um, sensory processing challenges happen in about half of the kids with down syndrome alone, but that's likely much higher in a child who's diagnosed with both down syndrome and autism. And then, um, ADHD, um, you know, which stands for attention deficit hyperactivity disorder. That's basically a constellation of symptoms with subtypes. So, you know, you can have a combination of the attention deficit and hyperactivity. Or you can have types that are predominantly inattentive, predominantly hyperactive, impulsive. And we know that kids with down syndrome alone may have trouble with inattention and impulsivity. That is absolutely true. Um, but kids with that extra diagnosis are typically on a whole other level with regard to at least the inattention component. So and this is a tricky one because attention really underlies all other cognitive skills. So for example, you're not going to remember something very well if you didn't even register it within your attention in the first place. Right. So it's really important to develop that attentional capacity in order for learning to occur. The good thing I mean, you didn't ask about this, but I'll just let you know. The great thing about ADHD and a diagnosis of that is that we know that medication that works for typically developing kids, for that disorder also works for kids with down syndrome. And I think anecdotally in clinic, we've seen a lot of really great success stories for kids around school entry age who have decided or their families have decided to try out some medication. And it's really opened up their opportunities for learning in quite a big way. So, you know, and that's anecdotal, but we've seen it happen several times where it's gone. Well. So for parents out there who are thinking about that, it's worth having a good discussion with your doctor for sure. Yeah. Yeah, absolutely. Um, Susan, so in the discussion we've just had, I mean, that sounds like a lot of bad news for parents and family members who are listening and supporters at school. I was wondering, could you talk a bit more about some of the strengths of the profile for people with down syndrome? I would love to do that. Um, we definitely know that kids and adults with down syndrome have loads of strengths, actually. They tend to have relatively strong visual processing and memory skills. This is especially when you compare them to their auditory processing and memory skills, which aren't so great. Um, which means that they can be really good at, um, activities that are and, and learning um, things that are, are very visually based, like sight words for example. Um, and as a general rule, you know, therapists and teachers at Dsph definitely go by this all the time. Um, we know that we need to every time we teach kids something, uh, it needs to be paired with a visual cue of some sort because it just works so well. Definitely. Their use of gestures can be quite strong, which is particularly fantastic. Um, not just from an entertainment standpoint, although that's definitely one. Um, but also from the fact that if you pair that with, um, the fact that they're not, you know, sometimes they're not so great with the expressive language. Right? But they can often augment what they're saying in a story, um, with a lot of use of gestures. And so we have lots of talented actors at Dsph. I would say, um, I remember one little dude in particular who I worked with, who basically had really not great speech intelligibility. Meaning I couldn't understand him very well, and others in his life couldn't understand him very well. And he had he had limited expressive language as well. But this kid was basically able to tell me a whole story about a fishing trip he went on with his grandfather just by acting it out and, you know, pulling me along as another character in the story. And, um, it was it's pretty fantastic. It's amazing how well they're often able to augment using gestures, for sure. Um, kids with down syndrome have a tendency to pay close attention to other people's faces. Um, so, you know, this is really beneficial when it comes time to encourage imitation skills for them to learn emotions or new speech sounds. Um, which is really it's probably a reason why so many kids with down syndrome have relatively strong imitation skills. They have increased empathy, which is probably my favorite strength of all of them. Um, meaning that, you know, things like they're much more likely to comfort an adult who's in distress than a typically developing child would be. Um, I mean, there's lots of examples of this. I'm sure you guys could give your own examples too. But, you know, I've definitely had times where I'm having an off day, and I haven't even recognized that in myself. But one of the adults will come up to me and, like, put their hand on my shoulder and say, Susan, how are you? Or, you know, something like that. Like they just seem to know when somebody is having kind of a tough time, which is pretty amazing. Um, social motivation I would say, is another strength. So people with down syndrome are often motivated by other's affection or attention. You know, I've seen lots of kids that at Dscf who will put in a lot of work for a good long session of applause. Right? So, um, that's that's really rewarding for them. Um, and we definitely use this strength. Strength with the kids all the time, but also with the adults too, right. Because you can then motivate them because they're so motivated by, you know, having a romantic relationship or getting and keeping a job. And you can use that motivation to your advantage in teaching, essentially. And then, um, one last strength is, uh, that often I find, um, people with down syndrome are really great, and they have a lot to teach us in this respect. Um, about living in the moment. I don't know. You know, that might be because they their memory isn't that great or they're not that. Sometimes it's hard for them to be able to predict what's happening next, but they definitely live in the moment really well, much better than the rest of us do, for sure. They're good at enjoying the moment. Um, yeah, it's quite refreshing, that's for sure. That was a super great rundown of sort of the strengths and challenges that our students with down syndrome face, sort of on the everyday level, and how that can be affected by any additional diagnoses or any of the medical complications that our students might be facing. I know when I talk to schools about this, a lot of the school staff are super surprised to know how medically complex these students are. Yeah, and just giving an explanation of that is very helpful because if you can imagine yourself not having good sleep and you know, your thyroid's off and so many other factors, of course it's going to be harder for you to learn. So can you do them pinpoint a particular time when you really realize the importance of understanding this learning profile when planning therapy for your students? Yeah. So I mean, I've been at this for such a long time now that a lot of this like research into the learning profile was applied retrospectively. You know, I learned about the behavioral phenotype and the brain differences and their implications, but it was already set against a background of the clinical experience I already had. But I certainly have agreed with it all. Um, I think the one new thing that cropped up, um, you know, after I had been working for a little while, was learning about the lack of intrinsic motivation in kids with down syndrome. And as soon as I heard about that, it just made so much sense to me. And, um, you know, I think I already possessed quite a lot of empathy for, for our kids and the struggles that they have, but it definitely increased it. And so just that learning about, you know, not only is learning harder and slower already for our kids, but they just aren't as inherently motivated as the rest of us to do it. It makes the difficulty with transitions between activities make a lot more sense. Um, it has a real implication for therapeutic practice, right, in that we really need to be focused on giving these guys fun, extrinsic or external rewards. And, you know, that's that's definitely, uh, something that we all practice at Dsph. And I would also say that, um, me aside, the importance of understanding the learning profile, you know, has been really helpful for parents, educators and other professionals. And you touched on this already, Marla. Um, so, you know, if we we have found that if teachers and and therapists and other professionals or parents even, um, are not aware of these things, then they do tend to incorrectly attribute things to laziness, for example, when in actual fact the child hasn't been sleeping and that's why they're lying down during circle time, or they're experiencing fluctuating hearing loss. And that's why they're not always following through on directions. Um, it's not actually selective listening, which we, we hear about a lot. Right. So it just I think it promotes empathy in all of us, um, makes us better problem solvers, gives us a starting point, and it makes it easier to move forward. If you're aware of the strengths and challenges going into it, could you talk a little bit more about intrinsic motivation for people listening who aren't familiar with that? What does that mean that our students either can't or Won't be likely to do right? So essentially what this means is if I think if you, um, the example I always give, uh, now is everybody possesses intrinsic motivation. So, you know, if you think but it varies. So on some days you wake up in the morning and you feel revved up and you're ready to go, and you know what you need to get done that day. And you have a really good day and you get it all done and everything gets checked off your list. And you didn't need, you know, a Starbucks in the middle of the day to keep you going or you didn't need a, you know, any other kind of extrinsic motivation. You got it done because you were ready to do it and you essentially did it for the sake of, you know, you felt good about what you had accomplished at the end of the day. And that was enough. And then there's other days when you wake up in the morning and you have to drag your butt out of bed, right? And that's the day when you have low intrinsic motivation. And maybe you do need an extra trip to Starbucks in order to keep yourself going, right? So, um, and, you know, nothing falls into place and you can't seem to get yourself going, and you're sitting down after lunch and you just can't get up from the lunch table to go back to work. You know, I think we all are familiar with that. So but the thing is, is that kids and adults with down syndrome may actually feel like that all the time. And so I think if we have that in the back of our mind, as this is what they may be experiencing, that's what I mean about it. Promoting empathy. Yeah. Yeah. It makes you see it in a much in a really different way. If you can see it through that lens, that's for sure. I just yeah, I just wanted to add that during many of my school visits and presentations, I talk to teachers and parents about that intrinsic motivation piece Peace in hopes that they understand that sometimes it is hard for our kiddos with down syndrome to complete some of those difficult and non-preferred activities because of a lack of that intrinsic motivation. I mean, they're not going to finish their printing worksheets because they know it'll make them better printers, but they will work hard and finish it if they know that they have some sort of extrinsic motivation or incentive to do it. Yeah, I completely agree with you. And you know, the extrinsic, just to be clear, the extrinsic motivation doesn't have to be a chocolate bar for finishing the activity. It can be that kid really likes Paw Patrol. And so we incorporate some Paw patrol letters and names and pictures into the activity to make it more reinforcing from the outset. Right. Yeah. That incorporating preferences piece is something I learned while working with individuals with down syndrome, and it makes such a huge difference in their motivation. I mean, if you know a child is into Frozen or Paw Patrol, and if you incorporate that interest into an activity. It definitely can increase motivation and follow through with that activity. I often think of, you know, practice for the sake of practice. So for other people who are, you know, learning a new skill, and some people are just motivated to practice because they know in the long term they're going to get better. Say you're learning to play the guitar or something. And for a lot of a long time it sounds terrible, but you're practicing for the sake of practicing because you know, that's going to help you. And that piece is often not there for our students with down syndrome, there's no practicing for the sake of practice. It needs to be rewarding and enjoyable the whole time. And I think Hina definitely sees that with some of those tough tasks like printing and cutting and dressing, which are just hard for our students. Yeah, absolutely. So Susan, we were talking about the specifics of the learning profile in individuals with down syndrome. And given what we know now, um, which types of professionals would you recommend parents seek out for support and what should they consider when they are looking for a therapy professional, a teacher, or a school to work with their child? Yes. Well, of course, given you know the two people who I'm talking to right now, you know, OTS and SLPs are way up there for the kinds of professionals we want to be involved with our kids with down syndrome. Um, also PT so physical therapists, especially when the child is young, um, it might be easier for, uh, kids with down syndrome to learn academic skills in an individual setting. And so that's why we have our 1 to 1 teachers as well at at Dscf. Um, music therapy can be fabulous for kids with down syndrome because they tend to love music and dance. And we know that, for example, um, in really engaging with music and in dance activities, particularly choreographed dance activities are also great for memory. And, um, and, you know, just essentially good for, for your brain all the, all the way around. Um, and then if there are behavioral issues, the other professional I would recommend for sure is a board certified behavior analyst. Yeah. Which we tend to think of as, you know, just for kids with autism. But that's really not true. Um, and you also, you also ask what what people should consider. Yeah. When they're. Yeah, when they're looking for a therapy professional. So you know, although certainly it's helpful if professionals have experience with kids with down syndrome. I actually don't think it's necessary. And, you know, outside of major centers like the Lower Mainland where we are and where Dzfe is located, these therapists with lots of experience with just kids with down syndrome are going to be really hard to find. But I do think there are some necessary components. So one would be that the therapist or teacher takes a collaborative, family centered approach. Um, we really want somebody who fully appreciates the grief or stress, um, or daily struggles that families who have a child with a disability like down syndrome are experiencing. Um, I think sometimes one thing we we hear a lot about is that well-meaning therapists may err on the side of giving too much information and advice to parents and parents of kids with developmental disabilities, like down syndrome, are already pretty darned overloaded, you know? And we don't want to put more pressure on them. Um, so definitely, you know, somebody who's who's going to take that into account? Uh, I think it's super important for the therapist or teacher to be fun loving, you know, um, because we know that works best for these kids. Uh, energetic doesn't hurt either. They just really, they have to be comfortable with that. That concept of incorporating preferences and putting in a little extra work ahead of time to individualize to that child's preferences and motivators, and relying on external motivators when teaching. Right. The person has to be has to be comfortable doing that and and regularly do it. And then the last thing would be, you know, someone who isn't afraid to talk to parents and to approach the parents first to begin a process of collaborative problem solving. If therapy sessions or things in the classroom are not going well because parents are really the experts on their kids. Absolutely. And yeah, so that is really helpful if somebody can, you know, take that one down position and, and basically, you know, allow the parent to educate them about their kid. Yeah, absolutely. And I know when I have OT students shadowing me or when I am speaking with parents or other therapy and teaching professionals, I, I like to highlight that being high energy and fun loving is a really great way to build rapport with our kiddos with down syndrome. Um, can you speak to the importance of that? Well, I mean, these are kids. It comes from that the the motivation factor that we talked about. It's I think it's a combination of that coupled with the fact that they are very socially driven kids for the most part. Right. They love a good silly face, you know, they love laughing. They they really gravitate towards facial expressions. Um, so if you can be more animated that that just will really help. And I know, I mean, after being a clinician for this long, I know that I don't have as good of sessions with kids when I am off my game. Right? So if I've got a headache or I'm I didn't get a good sleep and I don't have as much energy as usual, I can't. I notice that I cannot keep them as engaged. Mhm. Yeah. Marla did you have any thoughts about this as well? Well, yeah. I mean what it's bringing to mind for me is I don't think people in their minds picture speech therapy is quite a physical job. But when you do it at the Dzif, it absolutely is. I mean, we're moving all around. We're down on the floor, we're playing and doing all kinds of silly stuff. And really, whatever it takes to make sure that we can keep the student engaged and in a ready to learn sort of state of mind. And I can remember one day where Susan was helping me down in our therapy gym, and we were working on requesting more in a sentence format. And I was laying underneath the therapy swing and pulling it all the way up. So it's really ready to rock and roll. And then, and only then would the student give me that verbal request for more. So, I mean, it was you remember that, Susan? Yeah. Yeah. So those kind of things that will do whatever it takes to make sure that the student can do their best, I guess, is what it is. Yeah. I often wonder what might be going through the minds of parents and caregivers that might be sitting in our sessions, like, what are these therapists doing? And again, this is a topic for a whole other podcast, but that importance of play and pushing yourself out of your comfort zone as a therapist can really make a big impact on how therapy sessions go. It does. It does. Absolutely. Yeah. Yeah. They get way more out of it for sure. Yeah. Yeah, definitely. Um. How so? Things aren't really going very well, and this happens to us a lot, I think. And I would agree with me here, that parents will come in and say this or that happened at school, and I just can't get through to these people. And, you know, I've told them that my child needs this or that to learn better and it's just not working. Um, how do you recommend that parents really try and advocate for their child in those sort of daycare and school settings? Yeah. I mean, first, just right off the hop, I it really bothers me that parents have to experience that. I feel that that shouldn't actually ever happen. Um, but if it does, I think, um, there's a few things. So one being emphasizing again that strength based perspective. Right. So ensure that the professionals working with your kid Kidlit know what your kid's strengths are, and I really, I always am encouraging parents to be quite vocal about this. Um, in terms of resources, I mean, this podcast, I guess would be good, right? Or the, um, three, two, one article magazine article from, uh, this past month, I think it would have been February, um, on the website that Glenn and I wrote, uh, echoes, basically what I've talked about today in written form, and it's quite brief. So you could give that to families. But I think actually, more importantly, um, you know, given the individual variability we've been talking about, I just think it's a really good idea for parents to make an information sheet or a booklet about their particular child's learning strengths and challenges, maybe a brief video, because, you know, people are maybe more likely to watch a little video that has cute pictures in it rather than read a another, um, sheet of information. But essentially what you want to do is supplement that general information about down syndrome and the general strengths and and the medical issues that can happen in the developmental challenges with more specific info about that particular child. So, for example, there might be a mom who writes something like, you know, my child loves physical play. He learns best when he has movement breaks every five minutes. Um, he enjoys Peppa Pig and laughs really hard when he's watching videos of baby hippos on YouTube. Right? So there's some examples of external motivators. Um, he prefers it if you present verbal demands as a choice. So instead of pick up your pencil, try offering him black or blue and holding out two choices. You know he doesn't like sudden loud noises, so if you know there's going to be a fire alarm, make sure he's prepared. Make sure you take them out of the building. That sort of thing. So that I think more individualization is often makes it more helpful. Mhm. And I'm so glad you mentioned video because one thing that I think is really cool is for whatever professional is working in the situation that's challenging at the moment, to be able to see a video of the child doing well in another setting, and then you get a sense of like, oh, this is what this child is really capable of when things are going well. Because I think sometimes there's some underestimation that goes on in terms of what the child really can do. Yeah. And I think that's a that's a great point, Marla. And I think, you know, one thing that really, um, pops into my head when you say that is that a lot of our kids, in terms of speech and language capability, we will often find that kids are much more capable at home or in a quiet therapy setting where that's really being actively encouraged and, you know, demands on on the child's capacity as a learner and their resources is low. But when you put that same child who's maybe speaking in 3 to 4 word sentences in a school setting, they they don't talk right, or they talk a whole lot less. And so that does definitely contribute to that underestimation. Um, so giving giving the video, but also maybe trying to set up the environment at school so that the child has a chance to display how great they are at something like, I'm remembering one little dude who I've worked with for a very long time. You know, when he first went to kindergarten, he actually could read better than most of the other kids in the class. And so even though he wasn't spontaneously talking a whole lot at school, probably because he was overstimulated, what he was able to do was stand up and read, you know, a little chart that the teacher had put up about what was happening for that particular day, and he read that to his classmates, and you could see them all looking at each other in surprise, like, oh, I didn't know so-and-so could do that. Right. So it painted him in a really positive light right away for his classmates as well. Yeah. I think you both bring up such important points because, I mean, I have so many conversations with parents and teachers where they say, oh, well, he or she does this really well with you in the therapy session, but at home or in school, they don't do these things. And as therapists and teachers, we definitely recognize the fact that the therapy environment isn't the same as a home or school environment. I mean, they get more one on one attention when they're with us. And, you know, the whole session is really all about them. But at home and at school, it is busier. There's more demands that are being made. But, you know, there are strategies that can be implemented at home or in school that can make a world of difference. And knowing the learning profile of individuals with down syndrome can really help parents and teachers navigate those tough situations. Yeah. And also, just that made it pop into my head, too, that we know that kids with any kind of learning issue are going to have trouble with generalization from one setting to the next. Right. And so you absolutely want to make sure that you have things in place and structured practice set up in other environments with certain skills, so that you ensure that the child is able to generalize the skill to other environments. Absolutely. Yeah. Yeah. It's all about finding those sort of access points for how can our students, with their given strengths, sort of access and opportunity to show what they really know. And it is on us and school staff and their other support team members to find a way for our students to show what they're really capable of. And it's not impossible. There's definitely some challenges to that, but there's always some kind of solution that can be worked out in collaboration with everybody on the team. Susan, is there anything else that comes to mind for you that you would like to add about? Sort of what we've been talking about so far today? No, I mean, I think you guys asked some really great questions. Okay. Well, thank you so much for joining us here on The Lowdown. We're really looking forward to talking to you again soon. I think we have an upcoming episode scheduled with you that looks more into sort of the behavior and mental health factors. So we will look forward to talking to you again soon. Wonderful. Thanks. Thank you so much for joining us, Susan. It has been a great pleasure talking to you today.