Ep. 212: Teaching Families Self-Advocacy with The Asian Allergy Mom

We explore how parents can find their voice and then guide their children to a life of self-advocacy with Ina K. Chung, who is known as The Asian Allergy Mom. Ina is outspoken about teaching children self-advocacy while encouraging parents to feel confident in finding their voice as they demonstrate to their families that they deserve to advocate and be heard. 

Resources to keep you in the know:

• A Kid's Book About Food Allergies - Ina K. Chung
• The Asian Allergy Mom - Instagram
• The Asian Allergy Mom - Website

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Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Transcript

Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use. Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal, board certified allergist or healthcare providers for advice specific to your situation. Hi everyone. I'm Caroline Moassessi, and I am your host for the FAACT Roundtable podcast. I am a food allergy parent advocate and the founder of the GratefulFoodie blog, and I am FAACT's Vice President of Community Relations. Before we start today's very interesting conversation, I just want to pause for just a moment to say thank you to DBV technologies for being a very kind sponsor of FAACT'S Roundtable podcast. Please note that today's guest was not sponsored by DBV or compensated in any way by the sponsor. To participate in this specific podcast. We're exploring how parents can find their voice and then guide their children to a life of self advocacy with Ina K. Chung, also known as the Asian Allergy mom, who's outspoken about the importance of teaching children's self advocacy while encouraging parents to feel confident in finding their voice as they demonstrate to their families that they deserve to advocate and to be heard. And we'll be discussing Ina's new book and asian cuisine and how to make it even more allergy friendly. Welcome, Ina, to FAACT's Roundtable podcast. We're absolutely delighted to have you to join the food allergy conversation today with fact.

Ina: Thank you so much for having me. I'm happy to be here.

Caroline: So let's start with our listeners getting to know you better. So, can you share your journey into our food allergy world? And then a little background on the allergies that your family manages and just things to help us to get to know you better.

Ina: Absolutely. So, my name is Ina Chung. I'm an Asian American mom of two. I'm living in Denver, Colorado, right now. My daughter is the one in our family with food allergies. She's allergic to peanuts and dairy and egg. It all began for us when she was four months old. She had severe eczema, and the dermatologist we were working with recommended that we get her tested for allergies before she starts solids. So this is not typically the advice given nowadays, but the allergist did go ahead and test for a bunch of different things. There were some very low positives, some higher positives we were told to give her the low positives at home and to avoid the high positives, which were peanut, dairy, and egg. A year later, we had moved to a new city, and our new allergist wanted to do baked milk and baked egg challenges, and she unfortunately, reacted to both. So whether or not they were true allergies to begin with, I think about how it doesn't really matter now because they were confirmed that day. So my daughter has been avoiding peanuts, dairy, and egg all her life. And since then, I started an Instagram page called the Asian Allergy mom, where I share about our life and about the delicious food that we eat, the advocacy that I practice for both of my kids. And so that's kind of where we are today.

Caroline: Thank you for sharing this. And listeners. Ina is very interesting. She's also an accomplished author, and we're gonna talk about her book in a little bit. And she has a goal to bridge that gap with some of our food allergy concerns in this yummy, delicious asian cuisine. So we're gonna be talking food as well. So stay tuned. It's going to get very interesting very quickly.

Ina: That's right.

Caroline: So now, Ina, as a passionate mom who really works very clearly to uplift others, how are you using social media to share your message about self advocacy? And really, what do you think? Is that main message that you're sharing?

Ina: Yes. So one important part of what I do on social media is connect people to expert resources like allergists who are interpreting the incredible research that's coming out these days. There is a lot of outdated information out there, a lot of fear based messaging, really scary stories that, while important to be aware of, these scary stories, don't represent the fullness of the experience of food allergy families. So I try to point people to podcast episodes and other allergists Instagram posts because I believe that the beginning of self advocacy is education and facts. We need to educate ourselves so we can advocate for our kids at the allergist's office, at school, with our families. We need to educate ourselves so we can share accurate information with our kids.

Caroline: So, I'm a fan. I follow you on social media, and I do notice certain things. And so now, how can parents embark on this journey to learn to find their voice when advocating for their child's safety? You talk a lot about that, and you're so encouraging to parents because it's so true. Right? We. Our child gets diagnosed, we try to learn about it. And whether we're shy or outgoing, it doesn't matter. Now we have to find this new voice, and you talk a lot about it. So can we explore this with you?

Ina: Absolutely. Yes. I think that finding out about the diagnosis and even just keeping our kids safe is hard enough. And then our kids enter. You know, the world of playdates, preschool, kindergarten, and the mental load on us just quadruples, doesn't it? And thinking about advocating for ourselves is something that we don't really get taught from our allergists. Sometimes. Sometimes maybe they do. What I'll start by saying is that I am, I was and still am, an extreme people pleaser and introvert. I often get this tunnel vision about what I perceive other people want from me, what is needed in order for everyone in the room to be happy, often at the cost of my own needs or even the needs of my kids. And so having the kids that I do, my son is autistic, and my daughter has food allergies. The lessons I learned about how to overcome this aspect of my personality are really hard won. So here's what I've learned when I need to advocate for my daughter. For example, if the preschool teacher says they're having an orange party and everyone's bringing in orange food, this happened. My first instinct is to just freeze. Oh, gosh, this feels really big. And suddenly I don't even have the words, what can I do? What can I say? I don't want to be a bother to anybody. These are the thoughts that come to my mind. At first, so much insecurity. But when I take a breath and shift my focus, I imagine my daughter strong and confident, advocating for herself in this situation. I imagine what I would want her to do and say, and suddenly it becomes so much clearer. And then those things, the things I imagine her doing and saying, that becomes my guidepost. And I feel more confident to do those very things. So I'll send an email, talk to other parents, ask to see the ingredient labels, ask if I can be present at the event. And there's one more perspective that really helps me, too. When I advocate for my daughter, when I speak up, I know that I'm modeling for my daughter what she deserves, and she deserves inclusion and safety. And my hope is always that she sees what I'm doing, hears what I'm saying, and learns that this is what she is allowed to do for herself when she's ready. So all those things combined give me the words and the confidence I need to advocate for both of my kids.

Caroline: This is incredible. I feel like you just shared this magic formula because you just described everything. We go through. I mean, even though my kids are in college, as you're talking, I'm like, oh, gosh, been there, done that. But I have to say, I don't think I ever had that moment where you were saying, you know, how am I going to model this for my daughter? What do I want her to be doing? And I really love how you bring up. You deserve to advocate and you deserve to be included. That's such a powerful message for our children to learn. I mean, this is amazing. Thank you for having me. Thank you so much for sharing this. And also, listeners, I will make sure in the show notes you have all the links to Ina's website and her social media and the book that we're going to talk about in just a hot minute and recipes and all the good stuff.

Ina: That's right.

Caroline: So now let's turn to the children. When and how do you believe parents should start teaching and encouraging their children to self advocate? You already mentioned, you know, you're modeling it, but is there a moment where you're going to stop and actually do some, you know, very conscious and serious education? And then also, if you can touch on if there are any tools or specific language that they can use or things that you teach them. And then the last part, because I'm just throwing it all in here for you, is, let's talk about your book, because I think it's this beautiful tool that just really doves tail right into this. Working with our children, working with the families.

Ina: Right? Thank you so much. Yes. So I believe so strongly that advocacy starts with education. You gotta know your stuff. So when it comes to our kids, we can absolutely teach them from a very young age those age appropriate terms and information that they need to know. So child development experts tell us that narrating the world around our babies, even before they can speak, helps with their language development. So I used that advice to infuse allergy education for my daughter when she was a baby. So that even the day after my daughter's diagnosis, at six months old, I had her in the baby carrier at the grocery store, and I was narrating what I was doing. I was saying, oh, this snack has dairy and egg in it. Those are your allergens. They're not safe for you. Let's go find something else that's safe for you. And I just continued to use that language as she got older. And as she did get older, I explained more about what allergies are. And here is my definition for toddlers and preschoolers, because a lot of times people ask me, like, what can I even say? How do I define it? I don't even know what to say. And so here is my definition for our really young ones. I would say, you know, you have something called food allergies, and that means something different has happened with your body, and your body thinks some foods are dangerous, and if you eat those foods, then your body might feel really, really bad, or we might have to get help at a hospital right away. And some people get really anxious about that last part, about going to the hospital right away. And so I think, you know, your child, if that's going to cause a lot of undue anxiety, then maybe wait until they're a little bit older. But I do think it's important to let our kids know that there are some real dangers. But whenever I do talk about the dangers, I always describe in the same breath how we can keep our kids safe. So I'll tell my daughter, like, I know how to keep you safe. I always have your medicine with me. I always make sure your food doesn't have your allergens in them. We're going to be careful, but we don't need to be afraid and rapid fire. I'll just name a few things I did as my daughter was growing up that made her into the incredible self advocate she is today, even at age six. So when we're at the grocery store, I'll point out her allergens so that she knows what they look like. I teach her what foods often have her allergens, them what allergens in them, like yogurt, goldfish, butter. Pizza is typically made with dairy. I model for her how I prevent cross contact at home and when we're out and about, you know, I taught her to reject any food that hasn't been checked by me or by my husband, and I told her why. And I know that some parents are really afraid to have these conversations with their kids, but I highly, highly recommend doing so ASAP because we want them to have all the self advocacy skills, all the practice advocating for themselves that they can before they go to school. And so I wanted to talk about my book quickly. The book is called a Kids Book About Food Allergies. And I wrote it with a wonderful publishing company called A Kids Company. You may have seen some of their many other wonderful books. And basically it reads like a social story, and there's no characters. It's just me talking to our kids. It's for kids five and up. And I did a read aloud in my son's third grade class about this book, and they were fascinated. I talk about what allergies are, what can happen when someone consumes their allergens. But I also have a very strong message about inclusion. I say in the book that there's one thing that I want our food allergy kids to know. It's that they deserve to be safe. They deserve to be included always. And I made sure that the designer I was working with put those letters in all caps, fill the page, because that's really the message that I want kids to walk away from knowing that that's what they deserve. And so this book is for kids with food allergies or without food allergies. It's meant to kind of work on both levels. Like, I wanted our kids without food allergies to kind of be eavesdropping on this conversation about me reassuring our kids with food allergies that, you know, they deserve to be included in our birthday parties, playdates, in school, PTO PTA events. And so that's kind of the reason why I wrote this book, and I'm really, really proud of it.

Caroline: And now, when did the book come out? It's pretty new, isn't it?

Ina: It is pretty new. It came out at the end of November, 2023. And it's available on Amazon. Yes.

Caroline: Oh, excellent. And again, I will have the links for it. You know, I'm a personal fan of buying books like this and giving them as gifts or buying them when I want to educate somebody and say, oh, by the way, you know, my child has allergies, and, oh, here's this really fun book. I know it's a kids book, but it's actually kind of fun. And you can even read it with my child, you know, and explore together. So this is very exciting. So, again, I'll make sure we have the links.

Ina: Thank you so much.

Caroline: So now let's switch gears for a moment. You also work to let people know that asian cuisine can be very allergy friendly. So if you can share with us, how can people explore asian cooking? And how can we get rid of some of those fears that are just not valid?

Ina: Absolutely. So there is this pernicious myth that anyone with a peanut or tree nut allergy, especially, cannot eat asian food safely. I met an adult with an egg allergy who has never had any type of asian food in their lives due to their allergies. And this made me so sad. Asian food is so delicious. And I gotta say, as people who manage food allergies, our diets are already limited. And I hate to see myths and generalizations limit people's diets even more. So, yes, there are some Asian dishes with tree nuts and peanuts and egg and sesame, but there are just dozens of distinct Asian cuisines out there, and they cannot be generalized because they are so different from each other, just as French food is different from greek food, as Brazilian food is from Jamaican food. So if you're familiar with americanized chinese food, this looks nothing like korean or Japanese food, for example, or even food from China itself. And I'll use Korean and Japanese food as examples because these are the asian cuisines I'm most familiar with. As a Korean American, I can think of one traditional korean dish and zero japanese dishes that actually contain tree nuts, not even any peanuts. It's not something I grew up eating in a korean immigrant household. So when I heard that folks who are allergic to peanuts and tree nuts are avoiding all asian food, including, you know, korean japanese food, it just blew my mind. So if you're looking to expand your palate and add some delicious variety to your meals, I highly recommend looking into specific asian cuisines, like Vietnamese, Thai, Korean, Japanese, whether that's through cookbooks, Instagram accounts, or websites, you can get to learn the flavor profiles, the commonly used ingredients in some of these cuisines. And you'll realize that a lot of these cuisines are very allergy friendly, and there's going to be something that will work for you. Something that I recommend for a lot of my followers is to start with. Lotus Foods is a company that makes rice ramen that is top nine free. It's called millet and brown rice ramen. And adding that to your homemade chicken stock with, you know, whatever vegetables you want to throw in there and some, like, rotisserie chicken or whatever meat you have lying around, it's a great way to get started with some asian flavors if you want to throw in some soy sauce or. Sanjay Tamari is a wonderful company that makes all different kinds of soy sauces. One that is gluten and wheat free, that's called tamari, and one that is completely free, I believe, of all nine top allergens. And that's, there are no soy sauce, which is pretty new, and I've heard really good things. So there's a lot of products out there that are accessible to our allergy families.

Caroline: Thank you so much for sharing. I confess to not realizing that Korean cuisine was safe for my daughter, I think, until she was in middle school, when a new restaurant popped up in town, and I went inside with my friend and on the bookshelf, they had these really cool books, and then there was a food allergy book.

Ina: Oh.

Caroline: So I go to the counter, I'm like, excuse me, I just saw a food allergy book over here. Like, what's going on? And they're like, oh, the owner's child has allergies. And then I mentioned my kids allergies. And then they looked at me and they're like, well, of course your daughter can eat food here. And then they went through everything, and I was like, you're kidding. All these years?

Ina: Yes. Yes.

Caroline: I'm like, wow. And actually, my daughter did end up going to Korea a year ago and had a great time. But it was so funny. So I confess you were right. We get these ideas in our head, and we don't realize it. So if someone does go to find, like, they find a recipe and there's an ingredient that's unfamiliar to them, is it best for them to, like, maybe go on the Internet? Like, what should they do if they see an ingredient that's just. They don't understand it? What would you say to them?

Ina: That's a great question. I mean, it depends on where. If you're reading it from, like, Instagram, you can just contact that creator, I'm sure. Like, for me, I can definitely answer a question like that. Yes. Just doing an Internet search. There's so much interest in asian food these days, and I feel like there's so many websites that talk about all the, you know, lesser known ingredients that really break things down. So I feel like there's. There's a lot of resources out there that a good Google search will. Will turn up a lot of great results.

Caroline: Thank you. So before we wrap up today, is there anything else you would like our listeners to hear from you?

Ina: I just want to tell our allergy families that the allergies are not our fault. I want to tell them that when they are excluded, when they are made to feel less than that, that's not our fault. And we have the awesome responsibility to advocate for our kids. And it can be so hard sometimes. But there are a lot of us out there. And as much as you might feel alone, you're not alone. There are tons of communities out there. I mean, the Facebook groups are hit or miss. Right? But, you know, there's Instagram community. I'm meeting so many wonderful people on my Instagram page, and it's been wonderful. So you are not alone. So that is the message that I would love to leave your listeners with.

Caroline: Thank you. Those are absolutely perfect. Inspiring words again. Ina, thank you so much for your time. I know you're such a busy mom with young children, and we just appreciate you sharing your passion with us today.

Ina: Thank you so much. It's been so fun.

Caroline: Once again, I would like to say thank you to DBV technologies for being a very kind and generous sponsor of FAACT's Roundtable podcast. Please note that today's guest was not sponsored by DBV Technologies or compensated in any way by the sponsor to participate in this specific podcast. Thank you for listening to FAACT's Roundtable podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review, and listen to our podcast on Pandora, Apple Podcasts, Spotify, Google Podcasts, iHeartRadio, and Stitcher. Have a great day and always be kind to one another.