Ep. 8: Advocating Using the FIG Method w/ Dr. Saperstein

 

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https://d3ctxlq1ktw2nl.cloudfront.net/staging/2020-6-23/a692528f-ace5-f386-ae9a-45efb58ef047.mp3

FIG is an acronym to guide advocacy for your child. They are the three considerations you should take when advocating for your child, according to audiologist Dr. Lilach Saperstein. FIG stands for: 

F: familiarity 

I: intention 

G: goal 

My journey with Kimball’s hearing loss on Dr. Saperstein’s podcast: https://allaboutaudiology.com/all-about-deaf-plus-and-rare-disorders-episode-41-with-madeline-cheney/ 

Check out Dr. Saperstein’s podcast: https://allaboutaudiology.com/ 

Link to get a workbook with the FIG method: https://allaboutaudiology.com/fig/ 

Episode Transcript

Lilach  
In this case you do need to bring all that mama bear energy and papa bear you know guardian energy. Come and get it like this is the time to bring out all of that energy and fight for your kid. But like save it when it's a kid on the playground who doesn't get it.

Madeline Cheney  
Hi, I'm your host Madeline Cheney and you're listening to episode 8 of The Rare Life: advocating for your child using the fig method with Dr. Lilach Saperstein. Dr. Saperstein created what she calls the FIG method for advocating for your child. We will obviously get into more details about it but just an overview, FIG is an acronym. So each letter in fig stands for a consideration you should take when knowing how and if you should advocate for your child. F stands for familiarity. I stands for intent, and G stands for goal. I really appreciate this practical approach to something as complex and emotionally charged as advocacy. This is a great follow up to last week's special topic episode with mom Emily as she talked about her own experience and educating others about her daughter Nora. These episodes really work well together. As special needs parents, we have a lot of opportunities to advocate for our child and a lot of different scenarios and situations. I'm really excited to know about this and I can use this tool and now you can do so. Dr. Saperstein is an audiologist from Israel. And we connected through social media because she's actually a fellow podcaster. She has a podcast called All About Audiology and I actually got to share my story about Kimball's hearing loss on her show, which was really fun. So if you are one of my fellow hearing loss parents give her podcast a listen. She shares some really interesting insight from the point of view of an audiologist and she also shares parent stories about the hearing loss journey. And it's just such a great resource. So I will put a link to her podcast in the show notes as well as a link of my interview on her show if you're interested in that. Lilach is a lover of dessert and dancing in the kitchen. Let's learn about the FIG method. 

Well, Lilach, thank you so much for joining us today.

Dr. Saperstein  
Thank you so much for having me. I'm so excited for this conversation.

Madeline Cheney  
Yeah, it will be great.

Dr. Saperstein  
It's something advocating, I just think it's important for anyone and everyone to like, find your voice and be able to speak for what you need. But so, so much for parents of children who really have really need an advocate who really need somebody to speak for them.

Madeline Cheney  
Yeah. In the special needs world, it's a big deal that to be able to advocate and to know how to do that. Can you give me a little bit of background about your FIG method that you have created for advocacy? 

Dr. Saperstein  
I'm so excited to share it with you and share it with the world. The FIG method for advocacy is something I came up with. It's a three part framework that has three letters F, I, and G. And we're going to talk about what the whole concept is and how you do this. But I just think it's really important to mention that advocacy, it doesn't just happen automatically, because your child gets a diagnosis like not at all. If anything, you're so overwhelmed with, like, this big news. There can be grief, there can be shock. There can be all these big questions and action that's like, very important and very immediate for your kid appointments and driving around and doctors and then like therapies and all these things, that it's-- sometimes advocacy gets pushed aside and you yourself are processing. So then how could you possibly come and explain it to someone else when you maybe aren't so clear yourself? So it's important to give yourself space when you're going through all of that journey, that advocacy will come in when when you need it. Like usually when you notice something's not going right, and then you're like, Hey, I actually do need to step up over here. But to like, give ourselves space and permission and forgiveness and compassion, all those things that we wish for everyone else to have for us and for our child. Give it to yourself and to your partner and to your family.

Madeline Cheney  
Yeah, I love that, which is why we're even having a conversation about learning how to advocate like, it doesn't just come naturally. And so you have a background as an audiologist, how has this principle come into play in your world of your profession?

Dr. Saperstein  
Absolutely. I work with families who have a child that has a hearing loss diagnosis or more than one child. And what I found in my work is that there is so much to do, like we have to do testing, we have to fit hearing aids, we have to talk about batteries and tubes, or when there's cochlear implants. There's a certain surgery. So like there's other really big major concerns, medical. And also just like, like I said, a lot to take in. And then there was this extra missing next step that a lot of families didn't have. They didn't even know that they weren't on that journey, because there was so much involved in the first part. So when I'm--my whole mission, and my whole goal is to show people that there's a parallel thing happening, that you can both kind of always be hopping from one to the other, or you're doing the practical, technical important stuff. And you're also doing the fluffy and also very important stuff. It's equally as important, you know, so crucial that your mental health should be taken care of as a parent that you should be supported, and know what your resources are, and be able to communicate with the people around you about what you need, what your kid needs. Like all those things needs to be happening together with not after.

Madeline Cheney  
Right, in tandem. Yeah, I really like that.

Dr. Saperstein  
In tandem. That's a fancy word. Nice.

Madeline Cheney  
Now I sound really smart!

Dr. Saperstein  
Yeah, perfect. That's exactly I'm like in parallel. Yeah, in tandem. Perfect.

Madeline Cheney  
That's so great. So let's jump right into it!

Dr. Saperstein  
When you're looking at the FIG method, you pick a situation, pick a situation, how do you know which one to pick? It's very easy. The one where you got really angry, or really like upset or triggered or you're crying in your car afterwards. Or like you came home and told everyone like that lady that in the store, she said this and that or she looked at us this way or that way, like something that like really got you push your buttons. So for, for everyone who's like listening right now you can just think for a minute, and it will probably pop right up. Who that person is like, was it a kid at the playground that was rude to your kid. Or maybe it was like your pediatrician that totally missed everything you were trying to say to them, was it that IEP meeting, or like school meeting or whatever was happening, like, bring that scenario into your mind right now and hold it.

I got one.

Yeah, like maybe it's a doctor, maybe it's a family friend. Maybe it's your mother-in-law, you know? And you have to think about like, what happened? What did they say? What did--how did you react? Okay, so now that you have that in your mind, think about the F, the F is familiarity. Who is this person to you? So we just gave a bunch of different example scenarios, but and the one that you're thinking of, is this person important to your life? Like you have a relationship with them? Or are they a stranger? Like what is your familiarity with this person? Do they have "authority", like are they a medical professional or school professional or therapist? Or are they just a random, anybody off the street? Who thinks they could say stuff like this or is it someone on Facebook who you don't even know who they are, but like their comment ruined your day. So when you think about the familiarity, okay, so you like put that over here by the F and you hold on to that and say, just like label, what kind of relationship you have with this person, if you have one, and then I is intent. At this point, we want to try to see who is this person and what were they trying to do? What was their goal? Like what was their intention? Their intention was maybe to ask a question like curiosity. Sometimes they're coming in saying--and like staring like kids stare at the playground or at Chuck-E_Cheese's they're just staring at you and staring at your kid like maybe they have, you know, wheelchair or crutches or whatever else is going on. And this kid really had curiosity. That could be the intent. Or maybe the person's intent was they were trying to cover themselves like the doctor was being so insensitive by giving you like 8000 things like could go wrong, and just like rattle them off instead of being nicer about it, and it's like, well, their intent wasn't to hurt your feelings or upset your, you know, scare you, they really just have to do that like to cross off and check that they said it. So when you go back to the situation, you know, was the person really trying to upset you or anger you or hurt you? Or did they just need information? Like, is it the caseworker trying to get the story? And you're like, why are they making me go back and say the whole thing all over again? And it's like, you know, that's, it's a totally valid response. But when you start to say, hey, wait, what do they actually want? They want information or they're curious, or they're, you know, or they're rude. That could be it too. Like, you just just try to fill in in your framework of FIG. What's the F? Like, how familiar am I with this person? What do I assume their intent was because we can never really know. That's the other thing. You can't ever get into someone else's mind, but you can make a guess. And it helps to sometimes say were they really being mean? Which could be? Or was it coming out of ignorance and maybe curiosity? Or maybe they were really trying to protect you. Like, this is a really common one with family extended family, especially in-laws even more so since you already have that like, you know, in laws and-- 

Madeline Cheney  
Kinda...tension?

Dr. Saperstein  
Right. They're your family that you got later in life, so it's not the same as your family grew up with. Anyway, the very common thing is that extended family might not accept a diagnosis and might be saying like, Well, why do they need hearing aids? They hear me just fine or like, Do you have to do such and such in public can we like feed them in the car if we need to feed them in different way than other kids are fed, like those kinds of things. Sometimes for them, their intention is that they're still processing their own, and they're still going through their own shame. And, you know, things that they have to work with. So it's really not about not accepting that you're not okay. Like they're not okay. So when you put that in, in your list in your mind and the thinking method, you're like, it's not really about you. And that takes a lot of the pressure off in those situations.

Madeline Cheney  
So I think that like with the intent, the nice thing about either figuring out their intent or kind of giving them an intent, whether or not it really is accurate, I think it also helps you like you said, you kind of  depersonalize it. So it doesn't seem like it's a personal attack on you. Because I think that's a lot of times how they feel to you like, they don't like me, or they think I'm a bad parent, or you know, you internalize them, when really it is more about them. It's less about you or more about the job they need to do, or their insecurities because even when they and it's meanness or rudeness it's there. I mean people who are in a good place like confidence wise and and just personally they don't--They're not usually mean people. So that's one thing that's helped me like with a situation that Kimball had. Kids were making fun of him. And he was not aware because he's young enough. But when you were talking about the intent, I was like, they just wanted attention. They wanted their parents to pay attention to them. And sometimes we do that in stupid ways. But I think that intent, it's great to kind of put yourself in their shoes a bit, and see what they were meaning by it or that it really wasn't personal.

Dr. Saperstein  
Yeah. And, and that there's no real judgement about it. You're just kind of saying you're considering it for a moment, and then moving on, like, FIG, you know, we're not like, I'm not coming in here and say, Well, maybe they didn't mean to, maybe they this and that, like saying they're great and you should not feel your feelings. Not at all, like totally validate how you feel about it. Then just for one second, go there and then and then come back.

Madeline Cheney  
Just briefly. That's interesting. Why do you say that?

Dr. Saperstein  
Because I feel like that can become dangerous and become kind of toxic where you're always in other people and constantly forgiving other people for their behavior. But like, that's why I say if it's someone who's consistently rude to you every single time or just doesn't get it like, then you they have made their intent clear enough. It's like, it's very specific to whatever situation is. And it's also-- I like to pick one circumstance, like go in that story, be in that playground. Like, be there and feel the asphalt on your feet. And the kids pushing the kid on the slide, like, get into it really do like a visualization with it. And so it's kind of like a one moment in time circumstance. But you can definitely expand it afterwards. Like, series and patterns.

Madeline Cheney  
Yeah. And it probably becomes a habit once you use the FIG method over and over again, where you can just say, like, like, that wasn't their intent. They meant this. I'm not gonna take it personally and then kind of move on.

Dr. Saperstein  
That's right. And then when you get to the goal, this is where the magic happens.

Madeline Cheney  
Okay, excited for the G.

Dr. Saperstein  
Yes, the G in FIG is for goal. And in this case, it's your goal. What do you as the parent want out of this? In some situations, the goal is to move out of that situation exit, you need to leave, leave the playground, get out of the supermarket, like, don't be in that place where someone is antagonizing you, or is rude to you or us making you feel unwelcome or whatever it is that's happening. Maybe you need to leave. Like and then your goal, like what do I actually want? Then you come and say, Oh, I have to get--for the safety of myself and my child, we got to get out of here. Like that's what's safe right now. But sometimes the goal is, I have an opportunity to educate and to help this person learn. So that once--but you need the first two steps to be like, Okay, if this is my sister in law, and I really like her and we have a relationship that's going to continue hopefully for many years. And this is our holiday get together. I'm not leaving. But I have an opportunity to say like, Do I want it? Do I want now to engage and say, well, actually what you just said, do you not know such and such, ABC? And then she's like, oh, maybe I don't know. So maybe like engaging from a place of I want to educate and help them understand. And other times the goal is that you're trying to get services. Like if you're at a meeting, you can't leave and you're not there to tell them what they need what they need to do, you say, here's what I need from you. Here's what the services you're offering me once a week when I'm telling you we need four or five times a week. So in this case, you do need to bring all that mama bear energy and papa bear you know, guardian energy. Come and get it like this is the time to bring out all of that energy and fight for your kid. But like save it when it's a kid on the playground who just doesn't get it. So it just helps you to contextualize like get a bird's eye view a little bit, and a little more more space. Because when you're at the doctor's office and they're like trying to just push the next drug on you, but you really try to get them to listen. Wait, do we really need this? What are the side effects? What are the other options? What are alternatives? That's where you need to bring out your energy to ask those questions and get your whole plus and minus. But like, when it's this-- it's just the famous mother in law story. And people like I've just heard it many, many times. Where even grandpa or grandma's like your own mom also, let's not say there isn't difficulties in every mother-daughter and whatever relationship, so sometimes there's a lot of tension there about your parenting in general. Now add on top of it, whatever special needs, chronic health, whatever else is going on. There are places you're going to have to start putting boundaries and advocating even in your own childhood home or even when they come to your home, like those relationships. And now you said like familiarity: This is super important to me. And their intent is they still love me they just don't get it yet. So my goal is let's talk about it. Let's get some education. Let me show them some videos or take them with me to a peer support group event type thing so they can see other kids who are like my kid. Maybe they've never even seen this and like you're sitting here doing 18 hours of googling, but mom didn't do that. Like grandma right? So she's like, still like What is all this? What are these words? What is it this?

Madeline Cheney  
Yeah. I think part of the educating can be also educating them and like, that was a rude thing to say. And you can say in a kind way to just to say like, when you said this, that feels hurtful to me and I don't appreciate it when you say that. Because I think a lot of times (especially when there's someone that is close to someone, you love them), they're not trying to be mean. They may say things that are really hurtful and they just don't understand because a lot of times, that is-- they haven't gone through the same thing. Like maybe they didn't have a child with special needs. And so they don't understand how that feels as the mom when someone's saying something like that to you. So I feel like that's an important part of that, you know, the goal of like okay, one of my goals is going to be to kind of raise awareness in you that I feel terrible when you say that, you know, like, that's hurtful. And they'll probably be like, wow, like, I didn't realize that and, and in the end, a lot of times when I have those open conversations with people I love, we come out of it feeling so much closer and so much more love. And it also--that doesn't come up over and over and over and it doesn't fester.

Dr. Saperstein  
Right. Well that's so important. And another important thing that happens is that a lot of times we freeze, like physically in our body. When we get overwhelmed, we you know, there's fight or flight but there's also freeze where you just like cannot react. And it happens a lot in medical settings, especially when there's a big hierarchy difference in like certain countries that's even more pronounced just culturally, like if a doctor says something well, that's just, you know, there, patriarchal kind of model, instead of this shared decision making. So that's also like maybe you could say, one of your goals here is to actually speak like to get words out, to respond. And a lot of times it gets really flipped on its head, because when you want or need to say what you need to say in that school meeting and in the doctor's office, but you can't, then you end up screaming, or like emoting and getting really upset outside of those situations where that's misplaced, you need that, that energy and that fight, where you need it. And then when it's not relevant, like then it's not about having a thick skin. It's more like just saying, This isn't where I'm going to spend my energy. Like you could still hurt but I I'm not gonna now engage in it and let it go, you're just gonna let it go.

Madeline Cheney  
Yeah. And to write them down too. To have them in a note in your phone or like text yourself, those-- I have a lot of conversations with myself in text message for all the things I need to remember.

Yeah, like it's not worth it. Well I was like while we're in the topic of medical, you know, advocacy, it helps me to to be like, Hey, we're going to the GI doctor today. So I need to talk to him about this issue this issue and I wonder about this. And those, I guess they become my goal. I haven't really thought about it officially with the FIG method. But going in to the meeting with your goal in mind, I think is really helpful because then you don't I mean, like it helps you. Instead of like, wow, they're the doctor. They're this authority and kind of feeling. I don't know, I feel it's comfortable to be like they're in charge. I'll just let them do it. And so I think having those goals ahead of time is really helpful. So in the moment, you don't lose your nerve and not saying anything. You're like, well we need to talk about these even if we don't find answers. He needs to be aware that these are things that are on my mind or things that I've noticed or things that I want to address. And I think that helps you feel like the leader of the meeting, right like because as a parent you really are. You are the person--You are the main advocate for your child. No one loves them like you do. So having that that forethought of what your goals are, I think is really helpful.

But this really goes along with, with therapists too a lot of times I--we have awesome therapists in homes, like they come to our home and help Kimball and they will ask like, So do you have any questions? Or like, are you struggling with anything right now? And if I haven't thought of that beforehand, I mean, I'm like, I don't really remember. I think there was something but I can't think of it. And so I think having that goal, like with this meeting, I do want to address how this assignment they gave me to work on with my child is not working so well. And maybe we need to kind of reframe it or we need to tweak something about it because it just is not coming naturally to me, or just coming up with some kind of focus, because again, it's important to find your voice as the leader of this team, this medical and therapy team for your child.

Dr. Saperstein  
Exactly. And not only are you the leader, you're also the manager, and you're the service coordinator of your--and you're the scheduler, you also have to be in charge of meals and laundry on top of those kind of duties. And so in that role of manager, it's, it's very hard to take that on, because like a moment ago, you were pregnant. And now there you are in like 1000 responsibilities and, and like some people really go headfirst into that role. They're like, like I said, the Googlers people who have their notebook and their pen and they're like, what do I need to do? Give me a list, set it up, join this group, join that Facebook group, advocate like, you know, the people who are Go, go, go, but like that's how some people can cope. But other people, they, like I said, Go into freeze. And they're like, I don't know what this means. I don't know what to do. And so and that's also a response. So like, whatever it is that you--however you've reacted to this, it's exactly what you needed to do. But now that you're ready to start looking into ways that you're going to learn how to how to do this, like actually coming up for air and saying, hey, from on top, can we put some systems into place? How are we going to get support who are going to work with, bring in some other things to make it comfortable and successful for your kid plus for you, and the other kids in the family and your marriage, like everything has to be addressed?

Madeline Cheney  
Well, Lilach, I would love to end with how people can find more about the FIG method and about your courses. Can you tell us a little bit about that?

Dr. Saperstein  
Absolutely. So for anyone who's interested in specifically about hearing loss and audiology, come listen to the All About Audiology podcast. And definitely find special guest, Madeline, on one of our episodes. So we talk a lot about the parent journey and the parent experience with their child's hearing loss and a lot of information, but also tons of support and parents stories. So that's for the hearing loss. And for advocacy, I really think it can apply to lots and lots of parents who are dealing with any kind of chronic or you know, special needs where it's going to continue into all the years of your child's life, not just like a one thing that we're doing this month like it's going to go on. So you have to also rise with that and grow with that. So I do have a course on advocating and that is available at allaboutaudiology.com/fig and I have a special free download for all the listeners. You can come by and download it at allaboutaudiology.com/advocate. And over there you'll get a free download with a couple of tips and more on the fig method. And if you use the #fig on Facebook or Instagram, then you will see lots of pictures of delightful figs which I love to eat. But also you might see some posts about people sharing about their big experience where they were able to advocate by contextualizing the situation with the familiarity, the intent and the goal.

Madeline Cheney  
I love that. Well, thank you so much Lilach. I think this is just so important. And I think it'll really help all of us to be able to have that in the back of our mind and it's nice little acronym that we can bring up like FIG! I need to make sure that I remember that through all the other things that are going on all the appointments and the medicals we remember this tool for advocacy. I really appreciate you. 

Dr. Saperstein  
Thank you for having me. 

Madeline Cheney  
If you are a professional and you have a message that would be impactful on the show, head over to my contact page on therarelifepodcast.com. If you know someone that fits this description, please send them my way. You can like my Facebook page, The Rare Life Podcast for sneak peeks about episodes coming up. Coming up next week is episode 9, Taking Charge of Your Child's Therapies. This is a solo episode and I'm excited to talk about this with you. See you next time.
 

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