Let's Eat: Feeding Issues in Children with Down Syndrome

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Today on the lowdown A Down Syndrome podcast, Riley wbr gives us the lowdown on feeding issues in young children with Down syndrome. Over to you, Marla and Hannah.
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Thanks Danielle. Welcome to the Lowdown Podcast. We're your hosts Hannah Mahmud and Marla Folden . I'm an occupational therapist and I'm joined by my awesome colleague, Marla, who is a speech language pathologist at the DSRF. Today we have a topic for you that is so complex and yet so ubiquitous. Feeding it is, if it's going well, you don't even think about it. But if it isn't, then there are few things that can rival the stress of eating and feeding challenges. When you think about it, eating is every day , multiple times per day, and that is a lot of opportunities for stress. OT and SLP are both professions that support people with feeding, but in slightly different ways. Now, in some settings, there can be a bit of a power struggle between OTs and SLPs when it comes to feeding because there are some areas of overlap. But at the DSRF, we have a great system of collaboration that allows OTs and SLPs to use their individual expertise to help our clients. And today we have the immense pleasure of interviewing our awesome colleague, Riley Rosebush, who is also a speech language pathologist and has a special expertise in the area of feeding and down syndrome.
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Riley studied psychology and linguistics before completing her master's degree in speech language pathology at UBC. Riley has worked at the DSRF since 20 20 12 and focused on early intervention and feeding as part of her practice. Riley's passionate about early intervention for kids with DS, including optimizing feeding with a whole family centered approach. And she completed continuing education with talk tools, the SOS approach to feeding and breastfeeding support through Douglas College, which is local to us here in bc . As an SLP, she believes that feeding and communication are important aspects of a child's development that impact their ability to participate and reach their full potential. Welcome to the lowdown ri . Great to have you. Thank you.
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Very excited to be here.
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Yeah, we're just looking forward to it. So much. . Um , we usually start our podcasts with five secret questions, which are not related to the main subject. Everyone's always nervous about those, but it's just so that the listeners can get to know you a little bit better, sort of around the world. Are you good with them ? I
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Am as good as I'm ever good with them . , she's
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Nervous too. Oh , it's okay. Um ,
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They're fun ones.
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They are fun. Mm-hmm . They're super fun . So, question number one, how many cups of coffee does it take to start your day? Oh,
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That really varies. . Uh , it depends how pregnant I am at the time . . Yep . But, you know, I like, I , you know, the ideal for me, I think would be a solid three. Yep . Get me going. Yep . Yeah . And then maybe an afternoon cup later. Okay.
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Perfect. Well, caffeinated . Um, question number two, what are you reading right now? Oof .
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I am reading a couple of books. Yep . Uh , about babies since I have a little one baby at home. Mm-hmm . So I'm reading one called , um, the No Cry Sleep Solution .
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Oh, yeah. . Yeah . Wonder why ? Yep .
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And I previously read a different one on sleeping, so if you get a little bit of a theme here, we are worried about sleep. Yes . .
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Yep .
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Anybody else?
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I've been there. Yeah . Yeah ,
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Yeah .
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Yeah. You'll read a lot. Thanks. Yeah. In those moments, for sure. Um, question number three. What's your favorite Vancouver area restaurant to go to? Oh . Um , could be child full or child free .
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There are so many. I think one of my all time favorites, it has to be the Mackenzie Room. Mm-hmm . Which is a beautiful restaurant owned by actually a family who attends the DSRF. Mm-hmm . And it is one of the , uh, most delicious, and
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I've never been, I should go there. Oh
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Yeah. You have to go make it a special date night. Head over to the Mackenzie room. I'm actually not sure. Um, you know what they're up to right now with all the covid stuff happening, but , uh, that is for sure one of the best spots in town. Mm .
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Okay. I'm gonna go there. Um , question number four, you're gonna love this one. , what is your favorite animal to follow on Instagram? , we know you so well.
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We're like , that question has to be in there because we love that. You love this. Well, you know, if it really comes down to it, I think it's any baby animal. . Yeah . Uh , but dogs in particular I love mm-hmm . Uh , you know, any pug account , uh, yeah . Really is close to my heart or any good Dax in account. Yes. Uh ,
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Squid . The Griff.
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Yeah. And yeah, and Squid, the Griff , all the Brussels Griffin accounts out there, you know, shout out ,
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.
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So those are just some of my favorite Instagram actual accounts. , thank you for that question.
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Love . No problem. Um , and number five, if you had to decorate your whole entire house in one color, what color would that be? Oh ,
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Green. Yeah . The one color we painted , uh, when we got to our house, our apartment was our baby's room, which is all green. Yeah. Um , and every other wall we just decided is just fine.
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, because
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Painting's a lot of work. .
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It is. It's huge. Yeah. Green's beautiful. Yeah , totally. See, now everybody knows you better. Mm-hmm . They weren't hard questions. They were good funny ones. Um, let's dive right in. Can you tell us how you came to be so interested in the area of feeding?
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Uh, yes. So like all speech pathologists, I learned the basics I would say about , uh, feeding and eating and especially swallowing and the kind of physiology or anatomy in grad school. Mm-hmm . Um , and it was very interesting at the time , uh, but , uh, you know, mostly right after I graduated I was working in early intervention on speech and language. So it wasn't until I got more involved , uh, with the Down Syndrome Resource Foundation here , um, when I started working with individuals with Down Syndrome that I started to learn more about feeding. Um, you know, really I think my interest was peaked just by talking with families about, you know, what's going on with their kids and, and in their lives at home. And just kind of hearing over and over again about how much of a struggle , uh, feeding and , and eating could be , um, at home. And then, you know, we have so many great therapists here that , um, and everybody's very interested and interesting. And one of our colleagues, or my colleagues at the time who used to work here , uh, kind of started looking more into continuing education in that area. So I got to tag along. And then it wasn't long after that that I started trying to go to all of the continuing education events I possibly could , which has been a lot, been an expensive pursuit, but it's all been worth it. Uh , and you know , just reading all the books and all the, getting every, every bit of information I can. So it's been, it's been a journey.
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Yeah. And there's really, there's a lot to learn mm-hmm . 'cause in grad school, we get taught more about what to do when someone's lost their feeding ability. Mm-hmm . Usually from a brain injury or some kind of disease pathology. Mm-hmm . But we don't learn that much. At least we didn't in McGill. Um , what to do when children aren't developing it in the first place. Mm-hmm . I agree.
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Yeah. Our training in grad school was very adult focused ,
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I would say. Yes .
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Um, so yeah, kind of more of those clinical skills we had to certainly develop , um, you know, after you graduate. And I think that's , um, you know, one thing that's kind of important I think for parents or people in the system to kind of understand is that, you know, just because two professionals have the same , um, you know, accreditation or have gone to the same school doesn't mean they've all, you know, continue looking into more of the specific areas. Mm-hmm . Kind of the specialty areas. Mm-hmm . Mm-hmm . Um, so feeding is one, one area that you might want to just, you know, talk to your , uh, particular therapist about and see, you know, what is their level of experience and training and you know, is that something that they feel comfortable like kind of , um, practicing or is there somebody else who has the same, you know, technically the same degree mm-hmm . But might, you know, know a little bit more just 'cause they've looked at that , um, a bit more closely. Yeah . Mm-hmm
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. Absolutely.
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Yeah, for sure. Um, so, you know, in a clinic setting, like what are some of the things you might see that make you worry or question whether there's a feeding or a swallowing issue with our kiddos with Down syndrome?
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Mm-hmm . Yeah, that's a really good question. I think , um, you know, like you mentioned in the intro, Hena , uh, feeding and, you know, eating and drinking everything involves such a wide array of skills mm-hmm . And these all really affect each other , um, in development. So that can be hard to tease apart for sure. So , um, you know, I'm kind of always trying to look at a child's overall, like motor development and sensory development, which is something mm-hmm . Um , I know that you are also interested, or all OTs are interested in HNA for sure. Um, we're also looking at behavior communication and their social development. And of course these really interact with a person's general health. Um, so things like illnesses or digestive issues or, or stuff like that mm-hmm . And so I'm , you know, we're kind of looking at each person from that kind of whole holistic perspective in a way. Mm-hmm . Trying to kind of put all those pieces together. But what really kind of gets my , um, like what really comes out as like the number one red flag to me is when , uh, you know , through talking with parents or interviewing parents or, you know, just in discussions when you get to hear that they are struggling at home. Yeah . Or they start talking about negative experiences mm-hmm . That they've had or their kids have had. Um, and you know, I think it's really important for participation and development overall that eating and meals are enjoyable for, you know, children or , uh, people and also for the whole family. Mm-hmm . So if a parent is reporting that, you know, these times are stressful and not enjoyable, then I start to, you know, really question, you know, what is it about this person's development, those areas we talked about just a minute ago that are, you know , kind of , um, maybe need some help , uh, in , in therapy. Mm-hmm .
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Mm-hmm . Mm-hmm . Yeah. And I think also, you know, knowing that our kiddos with Down syndrome have so many medical conditions mm-hmm . And so many different things that can impact feeding too. Mm-hmm . So there's, I mean, I don't wanna say that there's always an issue, but there's a high likelihood that there will be some issue with feeding at some level
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At some point . Yeah. At some level
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For sure. Yeah . At some level mm-hmm
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. Mm-hmm . Yeah .
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Or the process gets going and then stalls out. Mm-hmm . Transitioning between one type of food and the next Totally . Somewhere in there. Yeah , exactly . And it's, I mean, it's just hugely stressful
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For families or like, even if you like get a cold or sore throat and then swallowing is hard because of your sore throat, and then Yeah . Feeding may either like become a problem or you might regress a little bit. So there's just so much variability in that area.
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Yeah, absolutely. And I think like all those things you , you mentioned like, you know, potentially, you know , a child who's had some surgery or spent a long time in the hospital mm-hmm . Or you know, just for any reason , um, has had to focus on like healing and getting better instead of eating, they, it's likely that , um, you know, that's something they might have to spend some time catching up on. Um, and like , um, you know, I think, you know, there's a lot of things that are, are like this , um, but if it's going well, like you said, you don't even notice it. Yeah . And you wouldn't even kind of question it, but when there's a problem, it seems it's a big problem . It's a big problem Yeah . Yeah . All of a sudden. And it , uh, you know, we have to eat at least, you know, a couple times a day. So it's a , it's an everyday , it can be an everyday stress for families. Yeah . Um , there are a few clinical things that we look out for that I can mention too . Um, so when we are, when I have somebody in the clinic and we're looking and watching how they eat and how they're , how they drink mm-hmm . And how that's all going, you know, some of the big signs of red flags that I look for that parents can also look for are anything from like food refusal. So just saying like no to mm-hmm . Any or certain foods which, you know , can kind of go along even with just picky eating mm-hmm . Which can be in a range from, you know, somewhat normal to , um, you know, very , uh, not normal , uh, or, you know, problematic nutrition. Extreme Yeah . Extreme. Exactly. Uh, if somebody has difficulty with chewing or drinking from a cup straw, that's a big one. Mm-hmm . Uh , if you see lots of food getting pushed out of the mouth mm-hmm . Um , that can be , uh, a challenge for sure. Uh, even somebody who's doing okay with, you know, accepting foods, but it takes them a really, really, really long time to eat that can indicate that there's something going on. Mm-hmm . Inside for sure. Um, lots of the kids we see get stuck on certain food textures, and I think this is like what you mentioned about kind of stalling out. Yep . So, you know, we try our purees or applesauce or yogurt and everything's going great and that's it. , and then nothing else. Yeah . And nothing else. Yeah . Yeah . Uh , and that's really hard for sure. Um, and something that I know you work on with lots of , um, our clients in is the , is self feeding or being able to feed yourself mm-hmm . Like pick up the food or use utensils and get that going. Um, yeah . Things like that. Yeah . Mm-hmm
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. And so like, I mean, in talking about those things, can you talk, tell our listeners a little bit about what are some of the feeding issues that individuals with DS might have, like specific to their profile of having Down syndrome?
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Yeah, for sure. So , um, earlier I think I mentioned quickly that, you know, one of the areas of general development that affects feeding is motor development or kind of how we move our body. Um, and , uh, there are a lot of movements that are very small and fine and happen, you know, in your body and also inside of your mouth , um, that are, are that need to be kind of just so, so because people with Down syndrome have low muscle tone , um, and may have some difficulty with coordination overall. Um, and the , you know, then this can kind of translate into difficulty moving the mouth in the right way to manage the food. Mm-hmm . And when I say manage, I kind of mean like taking the food in the mouth, chewing it adequately, moving it from side to side, and then moving it back to be swallowed properly. Mm-hmm . So , um, you know, that's a big thing that kind of , uh, is, you know, we, we tend to see , uh, because it really does match the developmental profile and the physical profile of mm-hmm . Of a lot of people with Down syndrome mm-hmm . Um, the other , um, part of that is, or the other side of that coin is kind of some of the sensory issues mm-hmm . So kids who might have or easily kind of overstimulated. So, you know, a taste tastes very intense to them or some certain flavors taste very intense or certain textures feel very intense. Mm-hmm . Um, that can affect how they accept and enjoy food for sure. Um, or the opposite of that being a bit under responsive or under sensitive hyposensitive and what that looks like is, you know, food or liquid goes in their mouth, but, you know, it's kind of like, oh, I can't feel it as well as I need to lost . Yeah . It kind of gets lost. Kind of that feeling like after you've gone to the dentist and had the freezing put in and Yeah . Eating feels very awkward because mm-hmm . You can't feel it yet . Yeah . You can't feel that grain of rice or whatever , um, properly. So that affects , you know, kind of mutually affects , um, how your mouth is able to move to, to manage it. Mm-hmm . Um, you know, and those things kind of, you know, as, as that's developing for kids, you know, we might we're, you know, more likely to see these motor and sensory issues, which of course affects how I like kind of feel and my attitude towards eating and you know, what does that impact, that's gonna impact for sure my behaviors around food for every meal.
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For meal . Yeah . Yeah.
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And I know if you've talked to Susan or listened to Susan Foss , it's episode, we know that there's lots of um , certain, certainly some behavior issues that are more likely to be seen , um, in individuals with Down Syndrome. And so when there's a challenging, a challenge like eating , uh, that comes up , uh, yeah . Behavior. Behavior we see behavior
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We do. Yeah. And I would, I think I would add to make it clear for parents, like food getting lost in your mouth just means that your kid can't collect the food to swallow it efficiently. So it might be in their cheek and, you know, you think they're done eating and then they open their mouth and the food is still there or up in the arch of their palate, which is much higher for kids with gen syndrome. Mm-hmm . And things get stuck up there. Mm-hmm . Or they might gag on that, that kind of thing. Mm-hmm
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. Yeah . So the facial and , and like kind of mouth growth, like how it looks tends to be a little bit different. Yeah . Like Marla mentioned, the high arch palate differences in how the teeth grow and um, so there's just a more like kind of small cavities for the food to get off . Yeah . And then if our tongue doesn't, it has low muscle tone, it doesn't quite work as well to scoop and scrape. Like it's gonna be more difficult to Yeah . Kind of, yeah . Collect that in an orderly way. Yes.
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And I think you were referring to the hyposensitivity around the mouth. Mm-hmm . Like would you, 'cause I know that a lot of our kiddos and adults will , um, put a lot of food in their mouth mm-hmm . And so would you attribute a lot of food in the mouth to the Hyposensitivity? 'cause I know that's a question that I get from parents a lot mm-hmm . Like, why do this stuff their faces so much like mm-hmm . And it is, it's, I mean, it could be partially that they're very hungry, but it is that like Yeah. If you wanna talk a little bit about how that is
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For sure. Yeah. And I think , um, you know, you for sure know the answer to this probably even better than me. 'cause you know, I think sensory development really is like an OT area of expertise for sure. But you know, if for my 2 cents, that tends to be what we attribute it to, of course we need to look at somebody's overall sensory profile and you know, the various kind of behaviors that they Yeah . Mm-hmm . Um , exhibit with food. But one big reason can be that yeah, they , they're not feeling it as much. So what do I do if I can't feel something as much? Well, I might want a more intense feeling. Mm-hmm . I might want to put more in so I can really feel it all. Like, you know , there's more area of my mouth stimulated mm-hmm . Um , similarly I might seek out , uh, really intense flavors. You know , a few kids I know love pickles, things like that.
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or like the super crunchy Yes .
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Super salty, that kind of thing. Or super sweet. Um, so that, yeah, that is one thing for sure. Um, but also, you know, we have to, can't really, it's hard to separate the sensory from the motor. So if I'm not able to swallow it, even if I'm feeling it, okay, yeah . If I'm not swallowing it as quickly , um, or as efficiently as I want to be because my mouth doesn't move the food back , um, the tongue doesn't propel the food back as efficiently as needed, then uh, the food's gonna just stick around for longer. Yeah .
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Mm-hmm . Yeah . And even if you're kind of like done with it in your mouth, yeah . You're ready for your next bite, but your last bite is still there. Totally. And that is a concern that comes in really, really often mm-hmm . Especially around things like bread Yes . Where people always get stuck. Yeah . You know , parents will say like, they just take bite after bite after bite of bread and they haven't swallowed any of it, and then it's a choking risk and people get really concerned about that. Yeah . Mm-hmm . Yeah ,
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Definitely. I think the choking risk is kind of where parents get very concerned. Mm-hmm . Like , oh , you're just pocketing a lot of this food and it's not going anywhere. Mm-hmm . Um, and I know that a lot of our kids have like an open mouth posture too. Mm-hmm . So do you find that that would impact their chewing as well? Like the , their inability to close the mouth? Or like , I guess is
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That more part know ? I think , I think sometimes those things can be like related or correlated. Yeah . Right. Like, you know, people who have overall difficulty with their mouth and, you know, strength in their mouth, posture, position of their mouth, growth in their mouth , um, you know, does that make you more likely to also have difficulty chewing? I'm not sure. Yeah. Um , but you know , just that overall difficulty with your mouth , um, at both at rest being open and your mouth at work, quote unquote . Yeah . Um , being chewing it's , you know , kind maybe more likely to, it's kind of a clue that something is different with the mouth perhaps. Mm-hmm . No . Do you have any more to add Hina that
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No, no. No. Do we ,
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You said perfectly, let's bring up the whole area of tube feeding just briefly mm-hmm . Another area of concern mm-hmm . Mm-hmm . For kids with Down syndrome. Yes. Thank you. Um , so lots of kids, if you're listening and you didn't know this , um, lots of kids with DS start off on a tube feed mm-hmm . Especially if they have some big heart concerns or strength issues when they're really little mm-hmm . Um, and coming off that tube can be really hard. Mm-hmm . So you wanna talk a little bit about that for
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Sure. Yeah. Um, I looked at one study that is , um, citing about half , uh, I think they we're calling it 48% of infants with Down syndrome, you know, when they were born, required at least some period of tube feeding. Yeah . It's not a large portion of the population that ends up requiring tube feeding for many years, but at least to help them get through that time. Like we kind of talked about when your body just needs to focus on healing, growing, getting stronger, maybe getting better, breathing exactly where , um, you know, a tube is just a , an alternative way to get food and nourishment into the body , um, without the baby or child having to really work mm-hmm . And put in that work , um, to feed and swallow and manage the breathing at the same time, so mm-hmm . Um, yes . So there often is a time for, you know, for a good portion of, of , of kids and babies where , um, they aren't, aren't taking in food or, or milk or formula by mouth. And what this kind of re can result in is, you know, just missed opportunities in, in learning and development. You know, babies are born , um, you know, prime to feed and prime to sock and mm-hmm . And taken food by the mouth . So that is really a critical time when , um, you know, they have all their kind of instincts and their reflexes intact where , um, you know, their mouth and body should be learning how to manage all this at once mm-hmm . Um , but of course if there's more pressing medical issues going on, then they have to kind of skip that. Um, so when they get old enough and strong enough to finally, you know, start feeding by mouth , um, they, that skill needs to be essentially rehabilitated mm-hmm . Because some of the , um, benefits that they would've had , um, if they had started as an infant have been kind of lost. Yeah . Um, and suddenly, yeah, you have a , you know, an older infant or , or child who mm-hmm . You know , hasn't had, you know, daily experiences with things in their mouth. Mm-hmm . Maybe other than some painful procedures at the hospital or wherever they were staying, so mm-hmm . There , there can be a lot to overcome. Yeah. Mm-hmm . Yeah .
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Mm-hmm . And do you find usually that you're starting at square one at that point, let's say you have a nine month old just coming off tube feed often with nine month olds , we're looking at purees mm-hmm . And maybe some soft solids mm-hmm . But I don't assume that you're starting right there mm-hmm . If someone's never even done bottle feeding, that kind of thing, or do you usually go straightforward?
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You know, it's, it's interesting. I think , um, in BC and Canada where we are recording this right now , uh, there is just a , there's a bit of a mishmash of mm-hmm . Of kind of systems in place for kids who,
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It's a polite way to say it.
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For kids who , uh, are kind of, kind of starting to transition off of to feeding or have had that kind of medical background, medicalized background. And so, to be honest, most of the kids who I see who are transitioning, I'm not the first person that they've kind of encountered along the way here. Um, so a lot of people have that I've worked with, have kind of tried solid foods , um, foods, purees, whatever mm-hmm . Um , by mouth at at some point mm-hmm . So I'm usually not kind of dictating what the first thing is. Right. Um, but , um, you know, one thing I think you might kind of be getting at, correct me if I'm wrong, but is the idea that , um, you know, we , we've been talking about the sensory experiences of food and how , um, important that is for being successful with eating. And , um, we just want to remember that there are ways to bring , uh, sensory experiences to a child's mouth that don't necessarily involve food or the risk of choking or the risk of, you know , developing those kind of fear associations with food.
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So sort of lower stress. Lower stress,
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Exactly. Yes . A little bit of oral stimulation, . Yeah ,
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Totally.
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Yeah . Absolutely . And that can look, you know, like a variety of things. Often, you know, there's a little bit of like mouth massage, there's a variety of like, you know , stimulating kind of teething tools or teething toys that, you know, we can kind of apply gradually even mm-hmm . Even just a parent's finger mm-hmm . Um , in the mouth daily, you know, can really help to kind of get that system, that sensory system online and, and kind of getting going. Mm-hmm . So , you know, there's a lot that you can do even if your baby isn't quite ready to , um, you know , jump all the way into food, food or, you know, milk, milk or whatever. .
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Yeah . Um, you were referring to infants a little bit earlier when you were talking about two feeding mm-hmm . So , um, are there any specific age groups that are affected by feeding? Is it like Yeah,
00:24:18.483 --> 00:25:59.605
Great question. Yeah. Yeah. So , um, for sure , uh, like we talked about because of the complex medical things that can be going on, infants , um, younger kids and infants tend to be , uh, you know, kind of the most affected by mm-hmm . You know , some of these bigger issues. But that definitely doesn't mean that , um, you know, that other age groups aren't affected as well mm-hmm . So if you know these issues aren't addressed well then for sure they just continue into childhood as we see lots of older kids who continue to have feeding issues , um, or who kind of develop feeding issues. Maybe there was a scary incident, like a choking incident mm-hmm . Um , or something out there that just caused a bit of a regression. And , um, yeah. So we kind of see older kids as well. And then another thing I think , um, to be aware of , um, and I , you know, I hope the word is spread about this in for people who work with older adults mm-hmm . But , um, like all older people in the population , um, these skills can actually get lost with age. So our swallowing muscles become much weaker. The reflexes and things like that can become much weaker. So you can develop , um, a weaker cough or gag and , you know , that's problematic because it's our cough and our gag reflexes that protect us from choking and from what we call aspirating, which is bringing food or liquid into the lungs by accident. Mm-hmm . Mm-hmm . So , um, for older adults or people who are experiencing any sort of cognitive or physical decline, then that's a time to , uh, maybe have feeding and drinking reassessed mm-hmm . Because , uh, we can start to see those skills deteriorate, which can lead to , uh, really troublesome health problems for sure. Mm-hmm
00:25:59.684 --> 00:26:01.365
. Aspiration being a big one. Yeah .
00:26:01.483 --> 00:26:03.045
I sure , yeah . Pneumonias and those things .
00:26:03.204 --> 00:26:03.444
Yeah , exactly.
00:26:04.164 --> 00:26:22.765
Mm-hmm . And I just wanna make it super clear for parents that even if your child is not choking, it doesn't mean that they're not having problems with swelling, unfortunately. Um , so even little tiny signs or sometimes no signs, like watering eyes and those kind of things could indicate that there's some aspiration going on.
00:26:22.785 --> 00:26:23.164
Can you guys
00:26:23.164 --> 00:26:32.125
Like, talk a few, a little bit about some more signs ? 'cause I think this is really important for parents to know, like just some things to look for for like Sure . I think it's silent aspiration, silent
00:26:32.483 --> 00:26:33.765
What the term isation is the term.
00:26:34.005 --> 00:26:34.924
I think it's really important for
00:26:34.964 --> 00:26:55.085
Her , and it just means that the child didn't cough or sort of spit out the thing that was choking them. So, you know, there's not the audible cue that mm-hmm . Somebody's choking right there. Um, any type of bluing in the lips, in the face, watering eyes, all of those kind of things. Mm-hmm . Do you wanna add to the list? There's
00:26:55.085 --> 00:29:29.164
A lot . Yeah. So cho like there , you know, both choking and aspiration imply that something's gone instead of down the esophagus into the tube into the stomach. Yeah . It's gone down the other tube, which is your breathing tube. . Yeah . Yeah . And either gotten stuck, which means choking like a piece of food, and that's the kind of like, you know, I can't breathe. Yeah . Um , you really see the , the color changes mm-hmm . Um , and that's for sure scary, but what if it's something like a liquid and it goes down that breathing tube, then it doesn't cause you to choke or not be able to breathe, but it does go potentially as far as into your lungs, which can cause things like , um, lung infections or ammonia mm-hmm . Yeah . Um , stuff like that. Um, so it's, it's really, it's really challenging because lots of people with down syndrome also have , um, you know, where they're kind of known to have a thought that it's, you know , within the range of expected to have more respiratory issues mm-hmm . So those , um, and, you know, more difficulty with their , uh, immune system, a little bit more immunocompromised mm-hmm . So , um, if that, if this is kind of the profile of the person in your life , um, that they're, you know , frequently coughing, having , um, maybe fevers or just random lung infections , uh, you do want to check for aspiration. Yeah . Um , they can do studies which look like a moving x-ray of somebody swallowing to make sure that the little bits of food or liquid aren't going down that wrong tube into the lungs mm-hmm . Just to rule out that that's , um, not happening. Yeah. Yeah. So that, those two things, like, you know, choking is , is scary obviously, because it's very immediately life threatening Yeah . And , uh, you know, can cause a lot of trauma for a child of her family. Um, and then aspiration is difficult because it's, you know, unless somebody's showing overtly that it's happening, it can go on for months or even years before mm-hmm . It's picked up Yeah. And , um, and causing all sorts of health issues. Yeah. Um, there was a study that looked at back at , um, the swallowing studies of those moving x-rays of kids who have down syndrome, and they , um, they were, they kind of reviewed them, and what they found was that of the kids who were aspirating, so I think about 60% of the kids in the study , um, were aspirating on , um, food and liquids mm-hmm . Like it was going into their lungs. Um, so of those kids, 90, more than 90% of them didn't show a single sign. Yeah . So if you're just watching them eat or watching them drink, you would think, oh, that is all fine and good. Uh , but it , if you looked in the moving X-ray Got it , then it looked , then you could see it going into the lungs. So it's not possible to just watch somebody eat and know what's happening on the inside.
00:29:29.724 --> 00:29:39.565
Yeah . Yeah . So what would be , but it should raise your red flags if your kid's having a lot of infections. Yeah . A lot of pneumonias. A lot. Yeah . You know, those kind of things. You , you have to dig deeper mm-hmm . There .
00:29:39.565 --> 00:29:40.884
That's what I was just gonna say. Yeah . Like
00:29:41.009 --> 00:29:46.005
What would be an indicator that a moving X-ray Yeah . Is indicated. Like, you know, so,
00:29:46.345 --> 00:29:48.805
So some, I , I need a list. . Perfect .
00:29:48.815 --> 00:29:50.285
Great. We love lists. There,
00:29:50.285 --> 00:31:10.565
There are a lot. Uh , and for sure, so like, really the , uh, there most kids will not show too many signs. Yeah . But there are some overt signs and some of the more overt signs are struggling or coughing on, on liquids mm-hmm . Or when you're eating , um, for little babies, especially like they're arching their back repeatedly mm-hmm . While trying to eat or kind of , um, yeah. Kind of splaying out their hands, things like that. Uh , looking for changing colors . So they're eating and their face goes bright red or they're kind , or Yeah . Yeah . Or , or any blueness, like Marla said, for sure. Mm-hmm . Um, and, and looking for those like kind of tears in the eyes that you might get if you were kind of choking or coughing on , on food too. Hmm . Um , some other more subtle signs might be Yeah. That kind of long lasting kind of that, that wetter productive mucusy cough mm-hmm . Um, because even if it's not to the point of becoming a full blown infection or pneumonia, it's still, there's the lungs are trying to work out Yeah . Um , whatever's in there. Um , and then in addition to the , uh, lung infections, any unexplained fevers, lots of kind of wheezing or those noisy coughs. Um , and then overall like kinda low oxygen levels or , or difficulty with gaining weight and mm-hmm . I think, and you know, it's kind of suggested that even if kids can't, or babies can't tell you what's going on inside their body , somehow they, they tend to know that it , this is doesn't feel good. It's not safe for me. So you get more things like straight up food refusals or kids who don't
00:31:10.605 --> 00:31:22.805
Want , don't just take it forever, ever, ever, ever. Mm-hmm . Because they're trying to make it be safe for themselves. Yeah . You know, just tiny, tiny amounts. Yeah . Yeah . Lots of efforts . Yeah . All of those are a sign. Yeah, for
00:31:22.805 --> 00:31:45.765
Sure. And so if you think that this might be something that you're concerned about for the person in your life, then the people to talk to are your doctors. It's a , it's kind of a medical assessment. Um , here in bc. Um , you can go to Sunny to , uh, BC Children's Hospital. Yeah . Mm-hmm . And they will do , um, assessments on kids. And there are a few places that do them on adults , um, different hospitals mm-hmm . Uh , to get that done.
00:31:45.974 --> 00:32:07.765
Great. That was very helpful. I think. Yeah. It's good for parents to know what to look out for mm-hmm . Mean we don't wanna scare parents either, but it's good to be educated and at least know mm-hmm . Especially when I like having the benefit of having you both here. I've learned a lot about feeding and the silent aspiration thing was a really good lesson. And the , I like that you described choking versus aspiration. Mm-hmm . 'cause sometimes those terms can be used interchangeably. Mm-hmm . So it's nice to know the difference between the two. Yeah .
00:32:08.125 --> 00:32:09.404
Yeah . Similar problem. Similar
00:32:09.765 --> 00:32:10.525
Problem . Yes . Exactly.
00:32:10.845 --> 00:32:35.845
Yeah . And I think it's important too that parents have, well, not just parents, but anybody who's a caregiver or supporter mm-hmm . Has just this inkling that it might not be stubbornness mm-hmm . Around eating, because that is kind of the go-to thing. Mm-hmm . You know, so and so won't eat or they take forever or whatever, but there's often a reason that that is happening. Mm-hmm . And digging deeper can kind of make it less stressful. 'cause at least then you know what's going
00:32:35.845 --> 00:33:59.884
On. Yeah. And I think that was a big lesson for me overall. Um, you know, just learning more about this is that, you know, we, what looks like behavior, what looks like somebody being like you say stubborn or kind of bad or, you know, they're throwing their food all the time. Like, how do I stop them from doing that? Uh, it's really important, especially with this area, to step back and find those underlying reasons. Absolutely . Yeah . And this is why I, I always tell parents that communication is an aspect of feeding development. Oh yeah. Because if I can't communicate how it feels when I'm eating and drinking, if I can't tell you like why I am throwing the food rest , why I'm afraid of it, basically. Yeah . Then , um, then I think that needs to be , uh, something that we look at or, you know , look is looked at more, more deeply. Um, the other thing beyond just, you know, quote unquote behavior as in like problem behavior is kind of that area , um, of anxiety. Mm-hmm . So lots of people who have communication difficulties do experience a lot of anxiety in the world because it's hard, you know, I , I don't necessarily understand everything that's happening to me or, or is being done to me or is happening around me. Mm-hmm . Um, and if I can't understand what you're telling me about it or I can't tell you how I'm feeling about it, then those feelings of being nervous or worried or scared , uh, can, you know, manifest in a variety of ways For sure. Which often looks like, you know, just straight up stalling out on . Yeah . Acting out or acting in. Yeah . Acting for sure . Just refusing, yeah . Mm-hmm
00:33:59.964 --> 00:33:59.964
.
00:34:00.204 --> 00:34:02.244
Yeah . Exactly. Yeah. It's a scary time for sure. For
00:34:02.244 --> 00:34:25.085
Sure. Yeah. So from your experience, do you think kids will eventually, or individuals with Down syndrome kids, I guess outgrow their feeding challenges and feeding problems? 'cause I know you mentioned that in adulthood we do have to kinda look out for weakened swallowing muscles and stuff. But just overall, if you have a kiddo that comes to you with a feeding challenge, is that something that they can outgrow or ,
00:34:26.284 --> 00:36:04.804
Um, yes, so I think , um, I think in general, I don't really love the term like outgrowth mm-hmm . For this area because it kind of implies that it just like happens magically happens . Yeah . Because I get It's a very good point . Get Yeah . You know, I think for lots of, lots and lots of people, lots of kids, you know, they're really lucky because their parents put in a lot of work mm-hmm . And , and put a lot of focus on this. So , um, they more like, you know, outlearn it, air quotes, manage it. Yeah . Manage it. Yeah . Yeah , yeah . Or I, you know , I , I of course, you know , we're talking, we are talking a little doom and gloomy 'cause we want people to take it seriously, but, you know, kids can learn and they do learn and they , they learn quickly. Um , luckily all the very often. So , um, you know, with the right types of approaches and supports , uh, uh, that are like sensitive to the child's needs and learning , um, you know, really these, lots of these issues can be overcome. So I would say that the issues can be overcome and , um, kids for sure and , and adults can, can continue learning throughout life. Um, but , uh, but it's, it's is possible that people do get stuck and, you know, that's why , um, you know, we are here at the DSRF or feeding therapists exist in general mm-hmm . Yeah . Uh , so it's, and you know, it's such a complex area. Uh, I would always say to people that, you know, it's a great area to like find as much help as you can kind of get, like ask for different opinions, find different professionals who can see it from different, the , the problem your child might be having from different perspectives and address each area. Um, because there's so much to know. And I think , uh, that, you know, certainly not one professional has all the answers and certainly mm-hmm . Not , you shouldn't expect yourself as a parent to have all the answers.
00:36:05.264 --> 00:36:20.364
Not at all . It's such a complex thing. Yeah . It's , it's super complicated. And our goal is always to make the whole routine of eating and mealtime fun. Mm-hmm . Yeah. You know, and if it's not that, then come to see us basically mm-hmm . If you're mm-hmm . Yep .
00:36:20.644 --> 00:37:19.045
Yeah , yeah , yeah . Yeah. Because I think , um, you know, like you said, we're focused on, you know, fun, family enjoyment, fa Yeah. Enjoyment. And that doesn't always mean for every person that the goal is that they're gonna eat, you know, all the broccoli or every Yeah . You know, thing mm-hmm . Um , on their plate or every, even all food that's like kind of, you know, as it is mm-hmm . For some people and it really enjoyable and healthy, you know, eating development and , and mealtime experience could be having some modified foods, like maybe for somebody it is better that they do eat most of their f food in pureed form because it's safer for them or Yeah . Mm-hmm . Um , you know, more enjoyable for them or whatever. Um, you know, so if somebody's able to get all the nutrition that they need and they're able to participate, I think participation is a huge one here. Mm-hmm . In all the social aspects of eating that they want to, and, you know, people are happy that way. Yeah . Then, you know, we don't necessarily need to change everything to meet some, you know, arbitrary standard.
00:37:19.885 --> 00:37:24.965
Yeah . We don't need everybody on carrot sticks and raw broccoli, basically. Like that's not our plan. You ,
00:37:25.525 --> 00:37:28.644
We just don't want meal time to be a stressful time. Right . Exactly. As supposed to be. Yeah.
00:37:28.644 --> 00:37:34.364
For sure. Yeah. And, you know, I think, yeah, just once again, like it's all about participation enjoyment. Yeah .
00:37:34.364 --> 00:37:56.885
I love that you use the word participation. Yes . Yeah. My OT heart's very happy with you all about participation. Absolutely. Yeah . . Um, so let's talk a little bit about some of the more practical things that , um, you may work on with kiddos with Down syndrome in terms of feeding. So what's the deal with drinking from a cup? Why is that so hard for our , for our people? . . I am so glad you asked this
00:37:57.085 --> 00:38:28.244
Question, and I think I have to think about this a little bit too, but I , I think when we're talking about something like this, I always try to get parents to either, you know, act it out with me or visualize this very closely with me. So let's all go on a visualization . Great . Let's do that exercise. Yes. Um, so we're picturing we're maybe sitting at a table and we wanna drink from a cup. So before we kind of jump ahead 10 steps and we're like, got the, you know, drink in our mouth, let's just think about our body sitting there at the table. And you know, I think Hannah knows, and all OTs know how complicated justit
00:38:28.525 --> 00:38:28.525
Alone
00:38:28.704 --> 00:39:36.724
Can be. Um, but you know, first thing you need is a stable and supported seating posture. Mm-hmm . And because of some of the issues to do with low muscle tone, maybe poor core stability, this can be the first place that mm-hmm . Uh , can , you might need to work on mm-hmm . For real. So , um, you know , this is something you might look at with your OT to look at maybe what is the best , um, seating option for my person to be , um, able to drink successfully from a cup. So we have sitting stably, , and then we're progressing from there and we see our cup in front of us and we want to reach out and get it. So that requires us to be able to coordinate both our vision, what we can see with our arms and our hands, what they need to do to just reach out just the right amount and kind of grasp that cup safely and stably without spilling anything. Mm-hmm . Um, and then similarly, we need to then be able to pick that cup up, you know, bending our arms in just the right amount just to just the right degree to get that liquid to our mouth , um, without yeah. Just enough force to, to not spill it everywhere , um, but to bring it close enough to our faith face. Um , then what we need to do is then tilt the cup ever so slightly . Yeah .
00:39:38.244 --> 00:39:38.244
You're
00:39:38.244 --> 00:39:41.204
Making this sound complicated, right ? I know , I know . Oh my goodness. It's not just as
00:39:41.204 --> 00:39:42.724
Easy as just drinking it. Exactly.
00:39:43.074 --> 00:40:14.244
Yeah. So just the right amount goes into your mouth and if we get too much , um, you know , that's a problem. If you get too little, that also can affect the sensations in your mouth. And so we want there to be just enough liquid that the person can kind of feel what's going on and , and be able to manage that. So , um, we're feeling we're experiencing whatever's in our mouth and, you know, this is some, the , the place parents often say, you know, my child can drink really well. They like juice, they like milk, we can't do water . Um, so plain water is, if you think about it, has like almost no sensory information other than like wet potentially
00:40:14.565 --> 00:40:14.965
mm-hmm
00:40:15.045 --> 00:40:31.525
. So , um, when we're wondering why our child's struggling with water, often it's this stage that sensory kind of processing in the mouth , um, where that kind of falls down because there's just not enough happening with water to kind of cue up our mouth and go , oh, I need to swallow, I need to do something. Especially room temp water especially, it has nothing.
00:40:31.755 --> 00:40:36.565
It's empty, no information , it's feels same as my mouth. Yeah. Basically.
00:40:37.184 --> 00:41:35.485
So you get more coughing, more spinning out, things like that. Uh , then you need to hold the liquid in your mouth. And the way you do that is holding just the right amount of tension in your cheeks, in your lips, in your tongue. So that requires a lot of stability, a lot of kind of muscle control there. Mm-hmm . And then you need to , um, you know, just so lift the tip of your tongue, kind of gather that water, scoop it back, and you know, not too quickly, not too slowly swallow it. Yep . Make a cute little seal in there. Oh yeah, you're right. If you're not quite closing your lips all the way, guess where that water's going? . And if you have a tongue thrust swallow pattern so your tongue tends to push out when swallowing rather than going up and back mm-hmm . Then, you know, we can all guess where that water our liquid is going, you know, most of the time. Mm-hmm . Um , for sure. Uh , you know, I think it's also, you know, that's just getting it to the level of wanting to swallow. And then once we're swallowing again , um, I've, you know, there's, depending on the stage of swallowing you're looking at, there's about like 30 pairs of muscles and nerves that need to be coordinated to get it going
00:41:35.485 --> 00:41:45.445
The right way . And those are like not under your control. So Totally . That's really a neurological thing, but if that goes awry mm-hmm . Then all of, you're so carefully planned. Everything just didn't work out.
00:41:45.875 --> 00:42:07.605
Yeah, exactly. So there is a lot to, to , for people to be able to do, like you say volitionally mm-hmm . Or things that we can work on with their body, with their arms, with their mouth mm-hmm . With , you know, controlling the cup. Um, and then there's the whole non volitional swallow kind of reflexes side , um, which may or may not go that well. So cups are hard , uh, in general.
00:42:09.074 --> 00:42:09.925
Yeah. I think
00:42:09.925 --> 00:42:44.925
Particularly around the amount, and that's what's scary for a lot of kids. Mm-hmm . Is that just that little gentle tilt. Yeah. And when you think about yourself as an adult, if you're drinking from a cup that you don't know how hot something is in there or cold it is, then you do an even tinier amount to just sort of like test it out. Yeah . Mm-hmm . Um , but if you watch little kids who are learning how to use cups, they don't have that skill. Yeah . And they often give themselves a dump in the face where they just tip the whole thing. And if that happens to you enough times because you can't control it, it becomes a really negative experience and it's like being dumped in a pool. Yeah . . Like it's not nice and you ,
00:42:45.144 --> 00:42:46.644
And you're wet and people make a
00:42:46.724 --> 00:42:53.844
Bus people Yeah . And people get loud about it and whatever. So consider whether that's kind of going on often too. For
00:42:53.844 --> 00:43:14.724
Sure. Yeah. And you know, it's kind of that just the right amount of force thing, you know, we can see that in lots of skills that people are doing, you know , it's maybe more obvious with their, something they're doing with their hands, maybe like holding a pencil or something. Mm-hmm . Oh , it's too light or it's too hard. Yeah. Um , but you know, when it's with our, something we're doing with our mouth, it's just harder to recognize that I think. Yeah . Mm-hmm . Yeah.
00:43:15.244 --> 00:43:37.164
Yeah . And then of course there are definitely lots of different, I know I have parents asking me with different types of cups, how do we try transitioning from one to the other? Um, and like, would you recommend like how, if a parent wants their kid to, I guess maybe transition from bottle feeding to a cup mm-hmm . Like if that's generally how it goes. Mm-hmm . Like what do you, what would you recommend their first steps are ? Should they see their slp mm-hmm .
00:43:37.405 --> 00:44:39.405
Or great question. Yeah. Either like, you know , again, your SLP or your ot Yeah . Or you know, whichever professional has that kind of like background a little bit, you know , so just chat with whoever you can and see if they have some tips to help you. But, you know, thinking about all those steps we went through with the , um, you know , what, how do you drink from a cup? Um , if somebody can help you break down at what step the breakdown is happening, you know , where is that issue? Are they picking it up perfectly, but it just, they their tongue pushes it out of their mouth. Yeah . Or can they not even quite get the cup to their mouth? You know, if you can first identify exactly where things are going awry, then you might be able to find a solution that's a great idea. Which may be a specific kind of cup. Yeah . Like, you know, doesn't need to have a little bit more weight in the cup. Mm-hmm . Does it need to be , uh, a cup that has handles? Does it need to be a cup that has a special kind of lid that lets out just the right amount of liquid? Yeah . Do we need a thicker liquid? Do we, you know, there's a variety of solutions, but if you don't know where the problem is coming from in the first place, and you're gonna maybe not make the right choice or be, or find the , the tool that you need for the job .
00:44:39.605 --> 00:44:48.045
Yeah . Or , you know, spend too much money on so many different kinds of cups and then feel like none of them are working when the problem's actually the chair. Yeah , exactly . Or the problem, you know, something.
00:44:48.355 --> 00:44:49.324
Exactly. Totally
00:44:49.324 --> 00:44:56.244
Different. And I think that's so great that you mentioned that though . You have to look at all the sub skills first mm-hmm . In terms of mm-hmm . And then figure out where the issue is and then tackle that.
00:44:56.244 --> 00:44:56.885
Totally. Yeah .
00:44:56.905 --> 00:44:57.804
So glad that you mentioned
00:44:57.804 --> 00:45:01.965
That. Yeah . My baby is a seven month old now, so I have been in the cup purchasing stage. Oh ,
00:45:02.085 --> 00:45:12.005
Have you ? Okay . Yeah , it's very fun. It's very funny . And there are, there's so many out there, right ? Like you just type in drinking cup on Amazon. Yes . Yeah . Too many options and it can get overwhelming if you don't know which
00:45:12.925 --> 00:45:23.844
Where to start. So For sure , and I would say for sure, it's a buyer beware situation for sure. Yeah . It's a big area of , area of marketing, right? Mm-hmm . And putting, slapping the word like infant or baby or trainer on something, it's therapy cup
00:45:23.905 --> 00:45:25.204
Or whatever. Yeah . Oh,
00:45:25.235 --> 00:45:27.045
Well don't even get me started on the therapy cup.
00:45:27.324 --> 00:45:27.844
It's sub bracket .
00:45:28.005 --> 00:46:20.724
Yeah . Yeah. Um, you know, one of my favorite feeding therapists to follow on social media and , and, you know, to read her books and, and things like that is Melanie Uck . And my favorite tip that she has for a cup solution is to get a baby food jar and put some elastic bands around it to make it griper. Mm-hmm . And one of the reasons I love it so much is because it's essentially free for a lot of families mm-hmm . And she knows , um, what she has kind of mastered and and pointed out is that it's not in the, like, marketing of the cup, it's in the features of the cup. Yes. Um, so if you can find whatever solution it is , um, is it , is it just a, you know, a double out shot glass that you're you're gonna practice with whatever. Yeah . It doesn't need to be a $40, a $40 anything necessarily. Um, we just gotta think about what features match the issues we are facing specifically at home.
00:46:21.065 --> 00:46:22.284
That's awesome advice. Yeah . Mm-hmm
00:46:22.364 --> 00:46:25.764
. And there are some hacks. You just have to know what you're like asking for. Exactly.
00:46:25.764 --> 00:46:30.525
Yeah. And I think that's, yeah, that's definitely the issue. Also, why would you encourage straw drinking?
00:46:31.074 --> 00:48:06.284
Okay. This is another really good question, and I think it kind of , uh, it, you know, dovetails really nicely off of our discussion about cups and, and , uh, merchandise. in general. Mm-hmm . Um, but I think, you know, it's important to know that both straw drinking and cup drinking are great and are the preferred methods by, if you ask most LPs and OTs and , uh, dentists, even if your child , if you can get liquids in by a cup or by a straw, then you are doing great. You're on the road to getting hydration in, in a way that , um, best optimizes a person's kind of facial development, dental development , um, oral motor development. Mm-hmm . And , uh, promotes the most , um, you know, kind of optimal or quote unquote normal , um, or just expected way of using your mouth when you're drinking. Mm-hmm . Um, the types of things that we, you know, of course the , the number one thing is you , your child needs to be hydrated. Yeah . Children need to be able to drink. Yeah . So, but, you know, getting past that point of getting hydration in , um, if we're looking at what's the, what's, what's the best or what should I be shooting for? Um, or what can I maybe work to avoid is the sippy cups that have spouts, especially the heart spouts. Mm-hmm . Um, and even, you know, there's more thought coming out around some of those kind of quote unquote special cups that have the, the silicon lid. Mm-hmm . I think like the 360 cup is one example. Um, but these are two types of cups that promote, or when you drink out of them, you actually need to use your mouth. And not that kind of a , you know, mature , uh, quote unquote normal, like swallow way mm-hmm . Um,
00:48:07.344 --> 00:48:10.644
So it's more like bottle feeding Exactly. Yeah . Is what you're saying. Yeah. Yeah. So
00:48:10.885 --> 00:48:11.405
You're slicking it out of
00:48:11.405 --> 00:48:14.244
Like Yeah, yeah . With like a contained suction vacuum.
00:48:14.554 --> 00:48:51.925
Yeah. And the , um, hard spout on the sippy cup. Um, your tongue tends to just rest under it just exactly like you say , like a bottle. Mm-hmm . Um , and, you know, kids might just wanna kind of bite on it. Yeah . Or you're not using your, your lips and your tongue and your mouth together in the most , uh, mature fashion mm-hmm . Um, so you're not really progressing beyond that stage of, of drinking from a bottle. So it's just, again, you know, using a bottle is great up until a certain point, and then , um, we do you want people to progress if they can. Yeah. Um, and then with the kind of 360 cups, the , the issue is that, and if any adults has ever tried to drink out of them, what you'll find is that , um, you have to like, suck really
00:48:51.925 --> 00:49:03.164
Hard. They're so hard. I've tried them. It's like shocking. Yes . Yeah , of course. That you would expect a , you know, older infant to try and drink from that successfully. Yeah . They need to like , no one of those are getting thrown around.
00:49:03.164 --> 00:49:34.804
Totally. Yeah. They need , need to make a quite a hard seal with their lips, which can be challenging, and then , um, suck with enough force to , um, you have to break that silicone seal, which causes you to overuse your jaw and lips. Mm-hmm . Um, you know, it does , they , these are great solutions for some people who have lots of trouble otherwise. But, you know, like, like anything, I think I would encourage parents to, if something's not working, try it yourself and really put yourself in the like , kind of body and mind as much as you can of your child and say, why is this not working? Mm-hmm . Or
00:49:34.804 --> 00:49:40.244
Why is this difference ? Do try the cup to yourself and if you can't do it, yeah . Then it's not the place to start.
00:49:40.465 --> 00:51:35.164
For sure. And a little bit of buyer beware some of the straw cups that are available too, a lot of them have valves that while they can be great for preventing spilling , um, can make it, you have to suck really, really, really hard or , um, you know, you have to bite down on the straw or something like that. Um, so something with a valve can actually be a bit of a challenge too. And so, one other thing to be aware of is a lot of these products, a lot of these special cups or special straws are designed more with the kind of parents' convenience in , in mind of being like non spill or a bit cleaner. Um, and yeah, like when you're out and about, maybe that is a big consideration , uh mm-hmm . Uh , but it doesn't, it's not necessarily bringing us closer to our goal, which may be our goal of, of getting the more mature drinking mm-hmm . Patterns going on mm-hmm . So , uh, that was my very long introduction to . Very good . Why straws are good. Um, so straws are, are a , a lovely alternative to open cups because you can often use a straw cup with a lid. So again, you might have a little bit less spilling, a little bit more , uh, a little bit less mess. Mm-hmm . Um, you know, if that's something that's important , uh, if you're out and about or, you know, in a school or social environment , um, they also require you to use your lips , um, to, you know, kind of seal around the straw. So if somebody's able to do that, they're practicing, you know, getting good lip closure and , and closing their lips , um, you know , around, around that straw. And then if the straw is positioned in , um, you know, kind of an optimal way, kind of a short straw that doesn't go beyond the teeth, then what the tongue needs to do, what your mouth needs to practice doing is pulling the liquid in by using your tongue in kind of a backwards motion. Mm-hmm . And that can promote, you know , so it's just another way of practicing a more mature , um, a more efficient way of swallowing and, and eating. And so for lots of people, this is a great activity that , uh, you know, kind of helps 'em move along in their swallowing and, and , and oral development in general. Mm-hmm
00:51:35.244 --> 00:52:16.125
. Mm-hmm . I like how you said it's an activity because it's, it's a learning activity. Mm-hmm . Is what it is. So if you're starting with something like this, I would say you don't need to feel pressured to do it every single time your child has a liquid. Mm-hmm . Especially if it's new for them and it's hard for them. Pick your time. Mm-hmm . Where you're gonna work on this, and then use your easier methods if you, you know, you're going downtown in a non covid time and you want your kid to stay dry Yeah . On their shirt or whatever. Yeah. Right. But it is, it's a whole skill set that has to be learned. Mm-hmm . So even just getting like the right cup doesn't mean it's gonna be magical and easy and smooth. It should be easier, but your , your child still to learn this skill . Still a skill. Yeah. Mm-hmm .
00:52:16.804 --> 00:52:17.085
Mm-hmm . Yeah .
00:52:17.885 --> 00:52:23.644
Yeah . Okay. Um , we are gonna take a quick add break and after the break we'll be back to talk more with ri rosebush.
00:52:24.235 --> 00:52:57.085
Show the world you love. Someone with Down Syndrome. DSRF Down Syndrome's Workshop is dark with shirts, baby clothes bags and more. Whether you are looking for World Down Syndrome day products, DSRF brand merchandise or general down syndrome items, we have what you're looking for. Love live on 21st Chromosome and Down syndrome. Great Lives at ds f.org/shop .
00:52:58.465 --> 00:53:25.565
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00:53:27.465 --> 00:53:48.125
And we're back here at the Lowdown podcast with our guest today, Riley Rosebush talking about the wonderful subject of feeding. Um, so Riley , we've talked a lot about things that can go awry and things that can go wrong and areas to look out for. A couple things on tools to try. What should parents do if they're worried about their child's feeding?
00:53:48.664 --> 00:55:33.565
So if parents are worried about their child's feeding, I would suggest , um, a really wonderful free online self-assessment tool at , uh, kind of a website for an organ organization called Feeding Matters. So you go to www.feedingmatters.org and uh, what you're looking for is the infant and child feeding questionnaire. So this is a , a questionnaire that you can go right ahead today and fill out for free. And it gives, the assessment kind of gives you , uh, immediate feedback on, you know, how your child is doing relative to other kids their age. And if something is , uh, you know, kind of expected at that age, the age your child's at, or if it's an area that might need some help , um, so, you know, this is a good place to go and kind of, you know, see, you know, how is my child doing relative to age expectations and um, you know, what are some things I might look out for? And then what you can do is print out your results and share that with maybe your pediatrician or anybody on your kind of therapy or kind of health profession team, and ask questions about starting or initiating feeding therapy. Um, you know , if you have a speech therapist or an o occupational therapist, you can ask them about their experience and their training in that area, or see if they might be able to direct you to a more specialized clinic or a more specialized person. Mm-hmm . Um, and then, you know, kind of going back to if you, you know, just maybe listening to this, you start to have concerns about, is my child swallowing safely again? For sure. That's a question for your doctor or pediatrician. 'cause they'll , they're the ones who will need to refer you for that swallowing assessment. Um, and you know, just, I think I would say don't feel like you have to do it all on your own , uh, because you know, we're gonna use this word again, it's a complex area, mm-hmm . Um, but hopefully there are people out there who can help you figure out a better way to help your child progress or help meals. Maybe just go more smoothly at home. Mm-hmm . Mm-hmm
00:55:33.644 --> 00:55:45.284
. Yeah . Um, speaking more about like sort of the feeding team, do you have thoughts on who the best person is to be in touch with? I think it's gonna vary a bit by region. Mm-hmm . Mm-hmm . But
00:55:45.675 --> 00:55:45.965
Yeah.
00:55:47.284 --> 00:55:50.244
Lay out the team members for us. Who do we, who are we talking about? So
00:55:50.244 --> 00:57:26.804
Basically, you know , I think we've, you know, kind of mentioned that health is an area that will affect feeding for sure. Mm-hmm . So , um, you know, you know, any area of your child's health that interacts with their eating or their digesting , um, is going to be an important area, you know, professional to be checking in with. So that could include things like gastroenterologists, perhaps . Mm-hmm . Is your child very constipated all the time or are they having weird reactions to food? Um, maybe you need to see an allergist. Mm-hmm . Um , we know that certain digestive issues such as as celiac disease are more prevalent in , um, uh, population of people with Down syndrome. Um, so, you know, ruling out anything like that because any discomfort again , um, while people might not be able to express how they're feeling or how food is making them feel, it's something that , um, you know, we need to look out for in , as, you know, signs and symptoms mm-hmm . Um, and then , uh, beyond that, you are gonna want to , you know, think about your child and again, in this whole area of feeding, where are they kind of falling down? What are these areas , um, that kind of seem to specifically speak to the, the issues my child's having? So that could include SLP and ot. If there's issues with , um, kind of managing the food, some of that oral development or managing , um, you know, the fine motor aspects or the gross motor aspects of eating and being able to sit at the table. Um, if there are major behavior problems going on, of course, there's , uh, behavior specialists out there who can help you look at that from a different perspective. Mm-hmm . Um, so that could be , um, uh, oh , so somebody help me. What's the acronym for a behavior specialist?
00:57:27.045 --> 00:57:27.724
B-B-C-B-A.
00:57:27.875 --> 00:58:41.724
Okay. So that could be A, B , C , B , A , uh, board certified behavior analyst who could help look at that. Um, if your child seems to be experiencing a or adult, you know, anybody is experiencing , um, issues that um, may be looking a lot, a lot like anxiety , um, or stress around food. Mm-hmm . Or if you are experiencing anxiety or stress around your child's eating a psychologist , um, is a great person to be able to have on the team and can look at , um, at, you know, what, how we might, you know, kind of bring the entire experience back to a calm place mm-hmm . Um , and, and deal with some of the, you know, potential trauma that might be lingering and causing issues. Um, and then, you know, a big area to, you know, focus on also is, is nutrition because ultimately the active eating is so that we can grow in , in a healthy way. So that's gonna be your dietician or nutritionist mm-hmm . Um, you know, kind of whoever you're able to, to get again in your region , um, who can look at your child's overall diet, what they're eating, and making sure that they're getting all the macro and micro micronutrients they need within whatever kind of specialized texture diet or, or you know, self-limited diet that they are able to manage. Yeah . Mm-hmm . Mm-hmm . Yeah . So yeah. Lots,
00:58:42.034 --> 00:58:51.644
Yeah. Lots of people. But again, it , you don't have to necessarily see every single one of all those , those people. Of course . Yeah . As long as you know what your underlying issue is.
00:58:52.204 --> 00:58:52.405
Absolutely.
00:58:52.465 --> 00:58:57.324
Or at least you're jumping off point. 'cause Yeah. That's a long list. Mm-hmm . If you had to go find those 10 people, it'd be a challenge.
00:58:57.434 --> 01:00:02.485
Yeah. And they might not all wanna see you. Yeah . If you're not having any issues with your GI system or anything like that. Exactly. . Um, but you know, I , I think we really, you know, as somebody on the side of the therapy side , uh, you know, there could be so many people who you are seeing as , uh, the parent or family member who's, who's managing this, who are giving bits and pieces of information. And as a person on the therapy side, I really appreciate it when parents are able to bring me those reports. Mm-hmm . Or put me in touch Oh yes . With whoever it is that has , um, information that may be pertinent because we, you know, just like we talked about a bit of the fragmentation in the system we have here , um, in BBC is, you know, it can be really difficult for us to access that information. It's not something that we just , um, we just get to call up and get those reports delivered. I wish or anything like that. Yeah . So we really do count on the parents , um, you know, in all areas of development. But I think especially this type of area , um, to be the leaders of the team and to be the experts and their child's , um, and their families experience mm-hmm . Um , so we, yeah. I think parents are kind of the number one in this mm-hmm . You know, steering the ship. Mm-hmm
01:00:02.565 --> 01:00:29.005
. Yes , I think so too. And there is really a limit to sort of the recommendation and , and advice that we can give if some of the underlying stuff hasn't been checked first. Mm-hmm . Yeah , exactly . You know, we have to know that there aren't underlying health conditions because then you can, you know, throw the whole book at the problem, but mm-hmm . It's not gonna fix it. Yeah . Absolutely. So yeah, that's a really big one. Yeah . Um, do you wanna talk a little bit about how OTs and SLPs here at the DSRF collaborate on feeding?
01:00:29.474 --> 01:00:31.925
Yeah. Yeah. Maybe he can talk about it too.
01:00:32.195 --> 01:00:33.445
Yeah. Perfect. Perfect.
01:00:33.585 --> 01:01:48.525
But you know, I think , um, we , we we're so lucky that we don't have to just put everybody into, there's not some like cookie cutter program that somebody joins up and then they get, you know, the um, you know, capital tea , the feeding program. Like Right . Like we are able to really individualize things as much as we can for the families we see mm-hmm . So in general, I would say , um, you know, families might start seeing either one of our occupational therapists or one of our speech therapists and working on, on some , um, thing. And then if we feel like we need support or there's, you know, an issue that we want the other profession to see, we'll just say, Hey, why don't you also sign up for a block of occupational therapy now? Mm-hmm . And then we can work together. So , um, I would say that I in general tend to work more on some of the like oral motor mouth skills, some of the managing. Mm-hmm . Um, like food and textures in the mouth. Mm-hmm . And um , you know , looking at some of , uh, you know, what's going on, trying to break down those steps of where things are going awry , um, from that level. Um, but that doesn't mean I don't see what else is going on with their posture in their hands and you know, what's happening there. Um , but for sure when those things are going on I say, oh, Hina , can you
01:01:48.525 --> 01:01:49.644
Exactly. Help ,
01:01:49.994 --> 01:01:52.445
Help, please. Yeah . Yeah. What else would you say?
01:01:52.704 --> 01:03:13.724
No, I think I remember , um, when I started at DSF as an ot, Riley had described it to me in a really great way and I don't understand why there's contentious issues in, in other settings 'cause it makes so much sense to me. But I think you had mentioned something to the effect of like, you know, anything from table to mouth, so using a use of utensils or some of the sensory experiences with the food . So table to mouth can generally be, and again, there's always overlap mm-hmm . But can generally fall under the OT umbrella. So if someone needs help using their fork or their spoon or you know, exploring different text , uh, different sensory aspects of feeding and then the positioning mm-hmm . But once the food is in the mouth and managing it, swallowing it, you know, all that is kind of goes under the SLP umbrella mm-hmm . So , but um, but the collaboration aspect of it makes it so much easier because I've sat in on a few Riley sessions and even today I've learned so much more , um, just again from hearing from her. So you kind of, she watches like , especially whether it's a shared client or not, we will watch each , each other's sessions, chat about it and then it kind of helps us create a plan that's collaborative and consistent. Mm-hmm . Because I think that's the problem sometimes is if we don't have the in-house people then, and if we don't get the reports, then the consistency is lacking. So like the feeding therapist at somewhere else is doing one thing , um, and then I am doing one thing. Mm-hmm . So you know that collaboration is really important. Mm-hmm . To be consistent. Yeah. Yeah.
01:03:13.764 --> 01:03:19.724
I agree. And you know , just many perspectives and we all have slightly different backgrounds and ways of looking at things.
01:03:19.875 --> 01:03:33.965
Exactly. A little bit of a different lens. Absolutely. Well, ri we really appreciate you coming in today and I'm sure you've given a lot of people food for thought . Good one. Um , terrible .
01:03:34.224 --> 01:03:35.405
It wasn't too much to digest
01:03:35.505 --> 01:03:35.804
All at
01:03:36.405 --> 01:03:58.644
, how we entertained we are by our own horrible job . Yes . Um, we will list a bunch of resources at the, on our sort of episode page like we always do. So if you're looking for more information or finding that Feeding Matters assessment mm-hmm . You'll be able to find it there. Mm-hmm . And thanks again Ri , we appreciate it. Thank you ri so
01:03:58.644 --> 01:03:58.764
Much.
01:03:59.284 --> 01:03:59.684
Yeah , this was
01:03:59.684 --> 01:04:03.925
Fun. Next week on the lowdown a Down syndrome podcast.
01:04:04.795 --> 01:04:53.085
Yeah. So I think there's some early desensitization strategies you can use. Um, it could be wearing the mask with the hose attached, but nothing on and building up the timeframe that they wear that and they're gonna wear it during the day and they're gonna wear it while they're watching their favorite TV show, something like that. And, and work using a behavior strategy. So you do this and then, you know, they get some kind of reward immediately after and , and , and again, you build up the time and then you still during the day work on wearing that mask, but with the machine on and building up that time and using a reward system in order to help establish that. Uh , o Other times, like if a family member uses CPAP also , um, having the family member do this with the individual just to show like, I have to do it too and we can do it together.
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The low down the Down Syndrome podcast is a protection of downstream search foundation. Formal ad ds OF do org and Young Conversation A ts OF , Canada , on T , Twitter , Facebook, and Instagram. The loan down is hosted by Mala Faan and Hannah Mahmud, and it's produced by Glen s the Loan Down Theme Music. And George Do was written and recorded by Wicked Skull .