Supporting Latin Families

On Season 11, Episode 6 of The LowDOWN: A Down Syndrome Podcast, Jeni Carcamo and Ana Lazcano give us the lowdown on supporting Latin Down syndrome families.

Transcript

Before we begin today's episode, we want to take a moment to acknowledge that this podcast is recorded in Burnaby, British Columbia, Canada, on the traditional, ancestral and unceded territories of the hən̓ q ̓əmin̓ əm and the Sḵwx̱wú7mesh speaking peoples, including the Musqueam and Tsleil-Waututh nations at the Down Syndrome Resource Foundation. We recognize the work we do to support individuals with down syndrome takes place on land that has been cared for by indigenous peoples for generations. We honor their enduring connection to this land and acknowledge the impacts of colonialism that continue to affect indigenous communities today. As an organization rooted in inclusion and empowerment, we recognize our responsibility to not only acknowledge this history, but to actively learn from it. We are committed to fostering respectful relationships with indigenous peoples and integrating principles of reconciliation, equity, and justice into all aspects of our work. In advocating for the rights and potential of individuals with down syndrome, we strive to build a more inclusive world, one that recognizes and respects all identities, histories, and cultures. Today on The Lowdown A Down Syndrome podcast. Jenny Carcamo and Ana Lazcano give us the lowdown on supporting Latin down syndrome families. Over to you, Hina and Marla. Thanks, Danielle. On today's episode, we explore the powerful impact of parent support groups created by and for families who share not just the experience of raising a child with disabilities, but also a cultural identity. For many, finding a space where language, traditions, values and lived experiences are shared makes all the difference in feeling seen, safe and supported. We are very excited to speak with two wonderful colleagues who started such a group at the DSF. Ana Lazcano is a DSRF staff member who provides supports in our adult classes, and is also a Speech Language Pathology Assistant or Slpa. Ana is also the DSRF Summer Camp Coordinator, where she makes sure that everyone is safe and having a great time. Ana moved to Canada as an adult before moving from Mexico. She was an engineer. She has several years of experience working with children, and her role within the Latinx family group is to keep the kids occupied and having fun, while the parents have the ability to connect. Yeah, it's all good times. And our other guest is Miss Jenny Carcamo. Jenny is a BC certified teacher with 15 years of classroom teaching experience in the public school system, and she completed her Bachelor of Arts in English and History, along with her teacher education at Simon Fraser University. Understanding the importance of educating students around physical literacy, Jenny completed the Physical Health Education Graduate Diploma at Douglas College. Jenny's outlook for teaching is through the social justice lens. She strives to create meaningful opportunities where all learners can thrive and feel successful. Jenny has a family member with down syndrome, and she's excited to be a part of the teaching team here at the DSRF. During her free time, Jenny's out and about. She's enjoying reading, hiking, and traveling, and spending time with the friends and family. Welcome you guys. Thanks for coming to The Lowdown podcast. Thank you for having us. Thank you for having us. Yeah, yeah, we're excited to have you here. This is a great episode featuring one of our most exciting programs that we're doing right now. Um, so in the grand tradition of The Lowdown podcast, we have secret questions. They're all math oriented for you. I'm kidding. Um, the first question is, Jenny, what's your favorite spot in your house? My favorite spot in my house. My bedroom. Nightstand with all my books. There's also a TV in there. It's just quiet. I can, like, make the room dark, but also add some light if I want to. So yeah, just relaxing zone. Yeah, totally. I like the book stack too. Good plan. Anna, same to you. What's your favorite spot in your house? Um, I have a reading chair next to a window that I really like. It doesn't have anything, really. Just the window and the books next to it. Yeah, and space for my book and my coffee and a comfortable reading chair, hopefully. Because. Yeah. Yes, that sounds lovely. So relax. Just listening to that. Okay. Question number two. Anna, we'll start with you first. What's your favorite children's book or maybe a book that you read growing up? Hmm. Um. I guess children's book that I like more recent. I love the Elephant and Piggie ones. Classic comedic? Yes. Very popular. Jenny I was a big Robert Munch fan since grade two. When did you introduce it to us? It's the one book that really stuck out for me was, um. I think it's called I Love You Forever. Right? Oh, yes. That makes you cry every time. The drama teacher, when I read it, I think it was even more impactful. Yeah. It was like, hold the tears. Hold the tears. Yeah. So I would say that's my favorite book. Awesome. Okay. And then our final question, Jenny, I'll start with you first. If you could be any age for a week, what age would you like to be? That's a great question, Hannah. Um, I would say 20. Okay, tell me more. Lots of energy. Young. True. You know, I could just go out and about, do things. Not as much responsibility at that point in life. Yeah. Um, yeah. Much less adulting at that age for adulting. Yeah, I can still, yeah, go out and be free. Um, Anna, what about you? I think I would be like 80 something. 80 other, end of the spectrum. You still have to be come with the wisdom of the 80 something. Okay. Yeah, yeah, I just, I don't know, I find that age very interesting. And you could probably still sit in your comfortable reading chair with your book stack and read your books. Right? Yeah. Or would you be partying as an 80 year old? Would you be partying? You never know. Going to mahjong? Yeah. Going to mahjong. Okay, well, thank you for doing that with us. We always like to do these questions just so our listeners can get to know you as human beings, not only as professionals. So let's kind of dive into our topic for today. So we wanted to talk to you about this wonderful Latin family support group that you all started. Jenny, can you tell us a little bit about how the group got started, like what was the impetus for creating this? I think there was like a little behind the scenes happening at different ends. I think Marla and Sarah had a conversation and I was kind of thinking about it. And then finally, um, Sarah came. She's like, I think we should start a Latin American prayer group. And I was like, Sarah. Yes. Yeah, let's do it. Um, and then after I'm like, but of course, that would be the three of us with Anna. So then we just asked Anna, would you be interested? And. Yeah, that's how it got started. And you guys are putting this on, I think six times a year at this point, like every couple of months or so. And people are coming here to the clinic for a few hours. Right. To kind of connect and things like that. Um, yeah. That's that's super. There's a lot of chats around it leading up to getting it going. Yeah. And I just like that you had a conversation amongst yourselves as colleagues and we're like, there's a gap here and we need to fill that gap because there's a lot of our families that would benefit from having a group like this. It's great when it kind of comes organically. You're just like, oh, there's something that's missing, and let's fill that gap. Um, so for our listeners, can you describe a little bit about what a day looks like when the families get together with the kids? What are some of the activities you do? Just kind of paint us a picture, maybe. Ana, did you want to get started with that one? Um, yeah. So they come on a Saturday? Yeah. Um, and we do, like separate rooms. One is for the parents and the adults, and then the other one is for the kids. Okay. Or they're mostly entertained while the parents do their thing, and they kind of choose what they want to talk about. Sometimes it's like a presentation. Sometimes it's more like talking to each other. Um, about one theme in particular, but then it's just sharing ideas and asking asking questions to each other. Um, what are the kids up to? Oh, sorry. What are the kids up to? partying. Yeah. No. Good. Yeah. Just playing. We do that in Spanish, too. So they're just playing with each other and. Yeah, having a grand time. Pretty much a good opportunity for the kids to connect as well, right. Not only for the adults. Um, and then Jenny, what does what makes this group different than, you know, any other parent support group that someone might see out there in the community? Yeah. Um, I would say, first of all, that it's in Spanish. Yay! Yay! I think that's really important. Lots of the families that come here are either new to Canada, or even if you've been here for a couple of years, it's nice to be able to connect with other families, um, from your culture that you're able to communicate in your language that most parents feel a bit more comfortable speaking in Spanish. Yeah. Um, and to express or ask certain things. So I think that's definitely what makes the difference. I think it creates a sense of community. Um, not everybody gets to meet each other. Obviously with different session times at the Dzf. So it's nice to meet other parents and maybe they have the same age group or just learn from each other. I think that has been something really powerful in some of the sessions that we have seen is just parents sharing wisdom with each other and encouragement or hey, have you heard about this resource? Um, and it's yeah, I love it that it's all in Spanish and people can ask further questions. So I think that's also really great. Um, so I think those are the two things that really make it stand out. Yeah, yeah. I think there is something really powerful about feeling like you've caught everything that's been said when it's in your first language, so that you if you have follow up questions, you know that you can ask them without worrying that, like maybe they said it and I didn't get it or something, you know, worrying about being judged or something like that, instead of having it in your first language and just feeling free to really get to the bottom of the information that you're looking for, which I don't think happens a lot if it's in your second language. Yeah. May I also add something that's really neat is not just parents, but they also come with family members. Yeah. Like like like so there's sisters or the child's aunt or their grandmother or. Yeah. So I think it's really neat that it's different. Members of the family are also coming to the group. It's not just only the parents that are showing up. The thing that makes it different and valuable for everybody to learn at a different stage that they're at. Absolutely, yeah. Because that's the thing, is, like, that particular child could be interacting with or in the care of so many different family members. So it's just great for them to be kind of part of the village too, right? And they can all kind of learn together. Yeah. And connect. And that's something we see maybe a little bit in like therapy sessions that maybe there's a grandma or an auntie or something, but they don't maybe get as involved as the parents do. But within the context of the group, I'm assuming that they can be fully involved and fully immersed in participating however they want to. Is that right? Yeah, that is great. And I think it just speaks to who we are as an American. Our families are involved, right? So like, everybody wants to be there, wants to learn, wants to um, and it's also just nice for other family members to hear from other family members of other people. So yeah, it's just it's really neat to see it kind of unfold every time. And it's always different every time, which I love. Yeah. It's great. Um, Anna, maybe you can describe the most recent because a group was maybe a couple weeks ago and it was musical this time. Do you want to kind of paint the picture of what that looked like? Because I think everybody was in there having a blast. Yeah. So this this time was a little bit different because it was just, um, hang out. We didn't learn anything, but it was just to create community. And, um, people came to play music. And it was just the families with their lots of family members as well. And we were all dancing and singing and doing our thing. Yeah, it was very nice because we also saw grandparents and like everyone came with at least four family members. Everyone was involved and everyone was just following the thing. Yeah. Yeah. And some of the students can really, like, steal the show, be in the center of the action if they want to, and having a really good time. I feel like I can imagine some of the students because we all share these students. A lot of them come to the DSR for services. I can just imagine them holding court and being like, oh, this is great. I have like not only my parents, but my aunt, my uncle, my grandparents and I can just show off. And I think even for them, it's a really cool experience to be able to have, you know, their loved ones around them in the group. Yes, lots of amazing dance moves we're seeing for sure. Yeah. Yeah. Also, for the family members, I think that it's very nice that other family members can come because sometimes their parents are more involved in the down syndrome community. But the other, like the rest of the family, don't see that. And it's nice so they can see other people. And how are they in different ages or in different stages? Stages? Yeah. Yeah, that's a great point. Like interesting for them. Yeah. Yeah. Especially if they're not super involved in the disability world or the down syndrome world. They only know their person and maybe not anybody else. So. Yeah. You're right. That's really valuable. Yeah. And it's kind of fun to just see how many how kids are so different from each other. And everyone's able to have a really nice time together. I think that's lovely. Um, maybe you guys can talk next about how do you guys approach discussions about down syndrome, considering cultural interpretations and different beliefs about disability? Kind of how does how does that go? Um, I think the topics that we've touched on thus far have to do with down syndrome and the Canadian perspective on other side. Maybe I've heard maybe just personal, just like different experiences that those families have had in their countries. Um, what that looked like for them. But I think right now it's just been the focus of, yeah, the Canadian perspective on, um, down syndrome, what resources are available? Um, you know, families are really interested to know about funding, um, and just like school support, which I think, um, which has really led to what we've been talking about. Um, I guess another point that we didn't say earlier is the topics that we discuss in our group is also, um, parent led. So it's their perspective, what they feel they want to learn about. So, um, so far that's kind of where the perspective has gone. Um, and that's really not surprising to me because those are two like the medical system, the education system there to kind of behemoth. Yeah, intangible systems with a lot of red tape and a lot of bureaucracy and a lot of little known pieces of knowledge that are so important and really hard to navigate, regardless of which language is your first language. So it doesn't surprise me that people want to talk about those things a bit more. Mhm. Um, how does how does it work. Let's imagine somebody else is like, oh, I should probably start one of these groups in my own community. Um, do you just like, do people submit the topics that they want to talk about, or do they just shout it out? How do you organize it from that side of, you know, we'll talk about this next time or how does that go? Yeah. Well, that first time that we met, it was like that meet and greet parents kind of that day gave a big list of suggestions. So, um, from that day we're like, okay, what topic would you like to explore for the next one? So that's how it works. Then we give the workshop or the talk, and then that day we're like, okay, this is the list. What interests you next? So yeah, I think it's been um, that has been the way that has really kind of led the sessions. For example, we've done, uh, surviving holiday Transitions. Yeah, it's a big one. Yeah. Um, yeah. Parents really wanted a little talk about support for parents. Um, another one was a school check in, and then the last one was the the music and dance one. So, yeah, it's just kind of led with what people are kind of feel they are needing at that point. Yeah, yeah. Okay. So the group that you guys are running is maybe relatively new. I think it's less than a year old so far. And one of the big pieces that needs to be in place is you guys kind of grow together in your support. Is this foundational trust and understanding among the group members? Um, and I think this is where culture comes in a lot around building community and building trust. Do you want to talk a little bit about what goes on to strengthen those foundations of the group? Yeah, let's start with something fun food. Yes. I was hoping you'd say that. Um, so every time we ask and we put it out there to the parents, you know, if you want to share something, it's been so great. People have brought tamales. Oh, yum. And there was a Colombian cake. I forgot the name of it. Yeah, there was just so many. Like there was a quesadilla brought in. Like there were just so many delicious food. And I feel like that is just already a good way before we even start talking. The food is there. Yeah, coffee has to be there for sure. Yeah. Yeah. So I think just bonding over those little small conversations, um, that's like a really good start. And it takes it out of formality and into more of like, let's just spend some quality time together. Yeah, yeah, yeah. Yes, definitely. Yeah. I think another important thing is that some people really want to make that community work. So there are like 2 or 3, uh, members of the, of the group that really like, encourage people, people getting together like they, they made a team for the run and they, they made a WhatsApp group. So they really want to make that happen. And they are also doing their part of. Yeah. Yeah. Of creating community. And you're kind of getting them together. Find that there's 1 or 2 people in every group that kind of emerge as, like the leaders or somebody where you can be like, okay, now you run with it and fly out of the nest and kind of. Right. Yeah. So that's great that you do find that some of them are kind of have a little bit more of that confidence to to kind of take the lead, connect people and connect people. I think a common thread from that first meeting was just building that sense of community. Yeah. Whether it's through just maybe consistently meeting with just one family outside of the group. Mhm. Um, but yeah I think so. I think that's a good driving force. People are always so excited. They always ask us when's the next one. When's the next one. That's a great sign. That's a great sign. That's really good. Um definitely. And I mean, what that means is it's not just us in the clinic saying, you need this, you need this. It's people saying, we want this. Like, we really want this to continue. Yeah. Yeah. Um, yeah. I feel like there are just so many opportunities to misunderstand the position of immigrant families. and the extra layers that they have to go through to navigate the public health system or the education system or things like that. And I feel like this provides a safe landing zone where, you know, nobody's going to be surprised by your question. Um, who's going to judge. Mhm. Mhm. Mhm. Yeah. And also they're gonna understand what you're going. What you mean. Because if you go to a therapist and ask about migration they will know. Yeah. Know what to do or how does it work. So you have to go with someone that already went through that or is going through that. Yeah. Yes. Recently. Yeah. Those things and they change often. So it's really challenging. Yeah. Mhm. What is it. I know Jenny you hit on this a bit earlier just with respect to group members being able to access the group in their first language. Right. Like I think it's so great because a lot of our families that speak different languages, if they find another family with that. And it's just like this connection that you have with somebody based off of your language. And, you know, and it's an immediate understanding of even if you might be from different cultures, different backgrounds with respect to, you know, where you're from or whatever socioeconomic status. But the language piece can connect everybody. So similar to food, right? It can just connect you immediately. Have you how have you found that in connecting all the members? Just the language piece of it all. I think because there's a common thread through it all, which is an understanding who we are as Latin Americans or and I think, you know, the understanding of the involvement of family. Um, and just like, I don't know, just being Latin, I don't know how to really put that into words, but you just know, right? They're your people. So you understand, um, maybe through, um, different traditions or celebrations and how important those are culturally. Yeah. Um, so I think there's like a shared understanding. Nobody you don't need to explain that to someone. Yeah. I was just gonna say there's like, certain, like, you know, ways of saying things that there are certain terms or there are certain ways of, you know, of, of like talking about a topic where you're like, I have to say just this much and you know exactly what I'm talking about, right? Like, I don't have to say more. So you get that innate understanding right away. Yeah. And there's less of a worry of being misunderstood because languages have so many levels of nuance. And you say the thing that you think is the right thing and your second or third or fourth language, and then you find out it was the wrong, you know, implication that you didn't really mean, but that's just not there if it's in your first language, which is so helpful. Yeah. Well, so there's this part of, uh, you kind of lose some, some of your identity in a second language. So in your first language, you are able to be completely yourself and express exactly what you want. And yeah, as you were saying, language is not only words. It's all that the words mean and everything that's behind and the culture and the. Yeah, the emotion behind it and. Yeah, that's. Yeah. I love that you said that. That makes a really that's a kind of got a bit of a chill when you said that. Like, yeah, you're going to lose your identity when you are, you know, I don't want to say forced, but when you're like in a situation where you have to use something that's not your, your mother tongue and you're just like, okay, now. And I'm like that too. I have a mother tongue where I speak with somebody else who speaks the same language. You get that instant connection, that instant understanding and that. Yeah, that creates a very long lasting bond for sure. Yeah. And being able to be really authentic. And, you know, a lot of people are like, I swear I'm funny in Spanish, you know, and it's like, well, yeah, because you can use words in such a different way. Yeah, yeah. Um, I think our goal really with this episode is that people are able to feel like they could do something like this, you know, the value of it. Yeah, yeah. And that it's okay to do that. Like, you're not being, um, exclusionary if you're meeting with just other Spanish speaking families because it is something that is very, like you said, it's identity based and it is needed, especially if you're coming into Canada from other countries. You need, like Marla said, like a soft landing place to be like, okay, this is my community and I have this home base that I can go to when I need to. Right. So it's a really important piece. Yeah. Um, do either of you have advice or lessons that you've learned thus far? I know that it's the group is still kind of in its infancy, and you guys are doing such a phenomenal job because I have Marla and I have some of those families telling us all the cool things and like, it's such a valuable program. We're meeting with the group the other day and, oh, this work we're not meeting and we're so bummed out that we're going to have to wait till next month, right? So it's definitely so valued from their perspective. What are some of the things that both of you have learned so far in in running the group? Jenny, did you want to start first? Sure. I think one important thing is to remember it's okay to start small, right? Maybe it's just a couple of people at first, but I mean, what we have learned is like through word of mouth or The parents emailing us. Oh, by the way, have you added this person? Oh, we also know this person. So it just kind of spreads, right? Everybody has their their also connections. Um, outside of the SRF that maybe they know that they could connect us to. So I think that's really powerful. Yeah. Just starting small and, um, I think just listening to each other. What what is the purpose? What what does this group need? And how are we here? To support each other? Yeah. Great. Ana, did you learn anything from. Yeah, I think it's similar than that. You don't need a lot to create community. You can just start with, you know, we don't always do, like, a class. Yeah, kind of thing. Sometimes it's just come and just talk. Talk about something. And they are the experts because they are the ones who are living it. So you don't really need to bring an expert every time or you don't need to. The group is free, by the way. So they just come. Yeah. Yeah. It's very accessible and you don't really need that much to create it. Absolutely. How much of a difference would you say that it makes being able to provide child care? I feel like that's a big deal for parents to be able to relax and have both parents attend. I feel like that has been instrumental in getting the group going. I don't know what your thoughts are around that. Yeah, it's very different when their kids are not in the room. Yeah. Yeah, they can just talk and know that there won't be any interruptions and they don't have to be aware of where. Where is the kid who's running away? Yeah. They're safe. They know that they're having fun and they can just relax and do their thing. Yeah. Have whole sentences with another adults. It's a thing. Yeah. I think similarly, just like I've heard from parents saying like, this is the time that I get for me to interact with other adults and just know that everything is going well with children. And I'm just here and I'm learning and I'm. Yeah, just connecting. Connecting. And I think that's, I think something a big thread through everything is that sense of connecting with others. It's highly valued in this group. Yeah, absolutely. Yeah. Um, well, Jenny and Anna, thank you so much for joining us on this episode. We're so happy. We would love to check in with you in a couple of seasons, maybe next season to see how things are going. Um, and for anybody that's listening out there, like Jenny said, start small, but start small, have some simple objectives. And just I think knowing and understanding and appreciating the purpose of why you're getting together is the most important thing, right? Because then everything else will follow after. So thank you so much for sharing your experiences. Thank you so much for running with this program and for providing such a safe space for our families. Um, it's pretty cool to see. So thank you for joining us today. Thank you for having us. Thank you.