All About The Parent Journey – Episode 62 – with Liba Lurie
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Liba Lurie is a parent, psychologist, and creator of the 5 Step Framework to Stop Reacting and Start Responding to Your Kids.
In today’s episode, she tells the story of how her son was diagnosed with hearing loss, and explains why it’s so important for children to have parents who remember to look after themselves, too.
This week on the All About Audiology podcast:
- 1:49 – Liba’s son’s kindergarten teacher brought to her attention that her son was having some difficulty with pronunciation. A hearing test revealed that he was struggling due to hearing loss.
- 5:49 – It can be hard to pinpoint mild hearing loss since it can sometimes be mistaken for something else, such as behavioral issues. This may cause it to go undiagnosed for a long time.
- 7:14 – As one of the 5 senses, hearing plays a huge role in processing the information we receive from the outside world. For those who can’t hear, it can sometimes feel like they are living in a different reality.
- 9:37 – Liba had two positive experiences that helped her to better understand her son’s hearing loss: the explanation given to her by the person who did her son’s hearing assessment, and the simulation shown to her by his audiologist.
- 15:57 – It’s important for parents to take care of themselves, too. Not doing so can have a negative impact on the connection and relationship they have with their children.
- 17:09 – Sometimes, emotions can be conflicting. When Liba found out her son wouldn’t be able to serve in the Israeli Army due to his hearing loss, she was relieved he would never be in combat. However, there was also a sense of grief that came with the knowledge that he wouldn’t be able to serve his country.
- 22:17 – It can be easy to become overcome by guilt, and wonder if as a parent you did something wrong to cause your child’s diagnosis—but you did not! Grief is a process that you must move through in order to eventually reach a point of acceptance.
- 25:35 – There are many resources that can help families after a diagnosis is received. Parents deserve to have support, and children deserve to have parents who feel safe and secure enough to guide them through life.
- 36:20 – It’s important to have support from family and friends, but they aren’t always the best person to reach out to when you need help. Speaking to a therapist can be a great option.
- 42:02 – There are times where you might receive resistance from people in your life who don’t understand the decisions you are making for your child. You may not be able to control the words or actions of others, but you CAN control your response.
- 46:48 – Knowing what your goals are for the future are important in being able to make difficult decisions in the present moment. Sometimes a decision that feels inconvenient, such as switching doctors or schools, will push you towards your end goal.
For more resources and research visit:
All About Audiology Facebook group
Motherhood In The Making Facebook Group
Mentioned in this episode:
The F-I-G Method for Advocating
Listen Next/Related Episodes
Ep. 63 All About Educational & Informational Audiological Counseling – with Dr. Sarah Sparks
Episode 50 – All About Therapy – with Dr. Yona Saperstein
“You as a parent, your story matters a lot, and it’s gonna to affect your child in very significant ways, you can’t just neglect that and focus only on what they need without taking care of what you need” -LS
“Hearing is one of the senses. It’s how we take information from the outside world, process it, make meaning of it and develop a sense of self in this world. And when you can’t hear or see, you’re in some ways in a different reality”- LL
Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and on this podcast we don’t just talk about hearing tests, hearing loss, hearing aids, all the things that come with audiology. We actually talk about YOU and YOUR experience, whether it’s for yourself or for your child or if you’re a student or a professional joining us today. I’m so grateful you are a listener to the podcast.
Today, on the show, we are going to be talking with Liba Lurie. She is a mom of four, a psychologist and creator of the Five Step Framework To Stop Reacting and Start Responding To Your kids. She’s passionate about helping parents figure out what’s really going on for them and their kids so they feel more calm and more confident and create nurturing, loving, lasting relationships with their kids. I’m so excited to talk to Liba because that is exactly everything that we do on this show and my vision and mission in the world as well.
Dr. Lilach Saperstein: “So, welcome Liba. Thank you so much for coming on the show.”
Liba Lurie: “Thank you, Lilach. Thank you so much. Thank you to your listeners. I’m really excited to be here.”
LS: “Yeah. You know, it is something that is really exciting to talk about when you find someone who gets it, because parenting is a big, big umbrella and then when you come down to hearing loss or communication, it’s a very specific kind of challenges that come with it. We’re always like, you need to communicate, you need to talk better. What if that itself, is the block?”
LL: “Right. I think what really resonated when we first connected is that recently we discovered that my son has hearing loss and that we are navigating this process. The emotional and practical process of getting him support.”
LS: “How old is he? Tell us about him.”
LL: “So, my son is in first grade. We are a two language family, we are a bilingual family. There are some expected delays in language, but then as his language developed, he was having some difficulty with pronunciation. His kindergarten teacher brought this to our attention and said, maybe you want to get this checked out. So, we pursued speech therapy, and as the process is here, we live in Israel, in order to get speech therapy covered by insurance, you also need to do a hearing test. And I thought, okay, why not. Fine. I’ll check it off the list, fourth kid, I suppose I’ll do this. Turns out that he was having trouble.
I remember sitting there in the hearing test and noticing what was happening. I could see that he was really having trouble and I remember that drop in my stomach. I suspect your listeners have experienced this. The professionals who are listening, it’s important to know that parents are experiencing this sense of profound grief. A deep sense of fear, loss and sadness around a child’s ability. What you thought and believed and expected would be for your child, and then you start to think, oh no this isn’t what I expected. It’s so frightening and it’s so sad and it’s all those things all at once. It’s so strong that it is not unusual for a parent to get really swept away by that and to be overcome by that.
I happen to be a psychologist. I happen to have formulated a framework and I teach this framework. I live the framework that enables me to recognize my emotional experiences, regulate them, make space for them, and to be okay with them so that I can make space for my child and support my child. But, it’s not something that is so obvious when it came to my husband’s attention. He really struggled to wrap his head around it. He was really overcome with fear, disappointment and sadness. To his credit, he knew it. He spoke to his therapist about it because it’s real.
I suppose before we get started in our conversation, I think it’s important that parents and professionals realize that the emotional reactions that we have are real. They are important, not only because they are real, but they are important because making space for them is really the first step in to being able to support your child in their journey, to come to accept, make sense of and accept their experience.”
LS: “Wow, thank you so much for sharing all of that and being so open with this. Because I do feel that a big part of what happens, is that the focus is on the child and the hearing test. Here’s the results, here’s what you need to do. Boom, boom, boom, let’s go. The medical team and everyone who is there is very practical and moving forward and here’s what it is, here’s what we need to do without making space I think for this.
I kind of go through the question myself, is that really the time and place when you’re an audiologist and you have fifteen patients to see in four hours and all of that, but when I was on that side of the booth, being in clinic, I always felt that that was missing. I know how important it is. That’s what really brought me into this work of being online and doing the podcast and having these conversations, making room for this, that you as a parent, your story matters a lot. It’s going to affect your child in very significant ways. You can’t just neglect that and focus only on what they need without taking care of what you need. So, everything you said about noticing your emotions regulating, space… So, let’s get into it.”
LL: “Yes. If anything, Lilach, it’s even more important.”
LS: “I agree.”
LL: “I’m not up-to-date with the political correct stuff so forgive me, it’s through ignorance but I suppose we don’t use the word disability, but hearing impairment is significant. It’s significant and harder to identify, I believe. You will let me know as an audiologist, it’s harder to recognize. It’s harder to pinpoint and it can go undiagnosed for a long time.”
LS: “So, he was already five or six, coming into first grade and at that point you aren’t sure. Is it social? Is it that they are ignoring? Is it behavioral? Is it a difficulty reading? You are already getting into all these other skills, and you see it’s way before all those other things, it’s access to the sound. Even a mild hearing loss, is not mild. It’s how a person experiences it, how it shows up for them. So, absolutely, everything you are saying (is true).
So, the term, the latest from what I understand is that we use hard-of-hearing for people who have some sort of hearing loss and people identify as deaf if they feel like their modality is not auditory oral for spoken and hearing but they prefer to use sign and they use other modes. So, kind of hard-of-hearing and deaf is the umbrella term.”
LL: “That’s good to know. Thank you.”
LS: “Yeah, sure. And the hearing impairment, is still a medicalized term. But I think socially and colloquially, we really don’t want you to be seeing it as an impairment. On the other hand, I think there is some important element in knowing that this is holding you back in some ways.”
LL: “Right. I think sometimes we shy away from our challenges, but as you are saying, it is a challenge and it is real and it affects a child, especially, as they are developing. It affects their perception of themselves and others in the world around them. This is one of the senses. Hearing is one of the senses. It’s how we take in information from the outside world, process it, make meaning of it and develop a sense of self in this world. And when you can’t hear or see, your in some ways in a different reality. If someone is talking to you, hello, and they are feeling frustrated, you are like, ‘why are you so frustrated?’ “
LS: “It’s the fourth time I called you”, but it’s like I didn’t hear you. Yeah, yeah.”
LL: “I didn’t know that. I didn’t know that. What I’m experiencing in my mind and body is not a reflection of what’s happening on the outside and that disconnect can be very frightening. Ultimately, what we are doing as parents raising our children, building relationships with them, is that we are inviting them from their own mind and body into reality. We are accompanying them as they develop. Now with hearing loss, with this impairment, I’m going to use that word, with this impairment, the path is rockier if it’s not diagnosed. Now, once it’s diagnosed, now we start a new path. And on that path, I think it’s important and I say this to myself, it’s so important that I make space for this.
I can tell you, when he was fitted, oh man, when he was fitted for the hearing aids, any parent who has gone through this knows. I’ve actually looked online. When we came home, we wanted to show dad what happened and I wanted to show dad so that he was in the know. And he knew because he was in the dark for so long, because I had done all the tests and it kind of crept up on him. I, sort of got hints to it so I had time to try it on.”
LS: “You know, you had a very powerful experience being in that room, so you saw him not hearing the sounds and you heard them and you saw him not hearing them. And that, by the way for our students and young professionals, that is a very important tool to bring the parent in so it’s not just like a paper and what do all these scribbles mean. You experience it.”
LL: “Yes. What I found helpful Lilach, having professionals in mind, having professionals who are listening, what I found very helpful was two things. One was that the woman who gave the assessment, she said to me (about) my son, ‘this will make sense to you.’ It’s still making sense to me that he is thirty on both sides. You know what that means. I don’t know what that means. And I’m sure you need to see more information, that doesn’t give you enough information but she said to me, your son can hear. He can hear. She said to me like this, ‘He is a child who hears, but he can’t hear everything, everywhere.’ So, she explained it to me and she gave that to hold on to. That was something I repeated to my husband.
Now, one of your listeners might be listening and say, well my child doesn’t hear. And that’s okay. What’s important is that you know. The need to know where and why. Where is my child on the spectrum. Give me the reality check. I need to know what’s real here because as I had mentioned, what we’re doing is helping our children, accompanying them on their journey into reality. So, we can reflect back to them, this is what’s real here and we can relate to them from reality. Here’s the reality, you can’t hear. That’s the reality. Now, I have to be accepting of that reality. I have to be okay with that reality so that I can make sure that it’s a safe place to invite them into, to accompany them into as they come to recognize that this is their reality. That it’s safe and I get it and reflect it back to you and I’m with you in it so that it can make sense.
That’s how, whether it’s hearing, hard of hearing, hearing loss, deaf, whether it’s anxiety, whether it’s fears or deep sadness and grief, our job as parents is to say, I see it, it’s real and I’m here to keep you company. So, we have to be able to tolerate our own experience of it so that we can feel safe in the reality. So, it was very helpful.”
LS: “And not to fix it.”
LL: “Yeah, not to fix it. Yeah, I can’t. Hahaha. I can’t and I think that’s what’s so hard for us, is that we can’t fix this. The reality is that you can’t fix it. You can support it but you can’t fix it.
Another helpful message that I got was from the audiologist who did his (fitting of his hearing aids). As I said, we were sitting and getting him fitted, I was still a little bit in denial. I wasn’t really sure it was real. And she demonstrated it to me. It was very helpful as a parent, I’m speaking to the professionals here. And maybe the parents who are listening who haven’t had this and still don’t really understand it, to ask, ‘can you explain it to me? I’m hearing. I’m not hard of hearing so I don’t really get it.’ Just like my daughter was saying to me the other day, she was like, ‘wait, what do you see?’ I’m legally blind and you have to special order my contact lenses. I have very, very poor vision. For any contact wearers, I’m like a negative eight. It’s very, very poor vision and I was trying to explain to her that it’s very hard to explain what I see and what I don’t see. Or how I do see.
It’s hard to explain how you hear. It was very helpful when the audiologist used her machine to simulate it for me and in that moment, it was so eye opening. Oh, oh. I had this real sematic experience and cognitive understanding. First of all, this is real. And wow, that is hard. That would be hard. Now I get it when they say he has to use a lot of mental energy to hear. Mental energy that could otherwise be put towards other functions. It was very eye opening. So, for the professionals listening, I think it’s important. These were important experiences for me as a parent that helped me understand what’s really happening.
And to the parents, as a professional, I want to acknowledge that, acknowledging what is real and what is really happening is hard. It is hard. There is a natural sense of grief that comes with it. What’s nice about recognizing that we are sad or that we feel loss, is that when we make space for that, we can come to accept it. And with acceptance, we can move forward as opposed to being taken away by the grief, sort of being swept away by it, we can be conscious about how to support our children. We can be connected with our wants and our needs and our children’s wants and needs and say, ‘what does my kid need right now?’
I find myself being far more thoughtful in light of that capacity as opposed to when I first became a mother and I was really overwhelmed by motherhood. And my daughter was born with a condition, she was in the NICU for ten weeks. I was exposed early on, in my early twenties, to the medical world and it was very frightening and I didn’t have the skills that I have today and that I teach. It’s made a huge difference for me to be able to support my son and say, you know what would be really helpful to me right now? And I can ask for it. I can say I need this right now, I need this support.
I’ve been very lucky and I find here in Israel, I’ve been very well supported by the system and I’m very impressed. Not every one is so lucky and not everybody has the same experience because their needs might be different. But it is important that we recognize that we, as parents, have needs for support. I think, Lilach, in your coaching how important and valuable that is, not just for the parents but for the children. We don’t realize that when we help ourselves, we are helping our children.
When we get the emotional support that we need, emotional practical support, we are ultimately helping our children. It funnels down to our kids. Not only are we given the direction, here’s what has to happen, a, b, and c. But that we are given that (feeling) of, good, someone is in my corner. I’m not alone in this, because I think that is something that is also part and parcel of the experience. Not just for your child, but also for you. Nobody gets it and it’s nice to be understood and that’s ultimately what we want to give to our children: understanding. Even if you can’t speak, or you can’t hear me, I still understand you.”
LS: “There’s still communication there. Connection.”
LL: “There’s still communication there and therefore, connection. Absolutely.”
LS: “That’s always the goal.”
LL: “It always the goal. The connection. Absolutely.”
LS: “I think that as parents, we get a lot of this messaging that you are now for them. You exist now to take care of them. Honestly, in the beginning, that is true. They are not going to survive if you don’t feed them every three hours or more often. So, we kind of sometimes stay in that mentality, okay now the kid is in charge and I’m there for them. Coming out of that mindset, I think is really the power when you remember that actually you are the adult here and you are there to help your child, to lead them, to guide them. I know there is this big debate if parents should be friends with their children and what that means, the word “friend”. But you know, maybe it could be friendly but I still think there should be some…”
LL: “You think they should be parents and part of being a parent is having a relationship and it should be a positive, nurturing, supportive, secure relationship.”
LS: “So, investing in yourself as a parent, I think is one of those switches that has to happen, which is, you are doing everything for your child and if you don’t do for yourself too, then that’s detrimental in the end to the relationship and the connection you have with them.”
LL: “I was thinking about when my son was getting measured for his hearing aids. We were in this small room and we’re sort of experiencing it together. It was the first time being there. I never had a child measured for hearing aids. And I remember, it was this experience of understanding, and recognizing, and experiencing the reality that this is real and this is happening. I remember feeling the loss. There was a lot in there. I think what I was saying, that the professionals of the audiologists helped me understand with her machine. I remember sitting there.
Here in Israel, army service is compulsory and it is something that is generally valued, culturally it’s valued, serving your country. A very patriotic country. He’s our fourth child and our only son, we have three girls and a boy. So, him going to the army is something that is on one hand special that he would potentially a combat soldier but also very frightening as a mother, you could imagine. I remember asking the audiologist, ‘can he serve in combat?’ She said, in short, ‘not likely. It’s a risk to his security if he is in the field and if he loses his hearing aid, he will be more vulnerable so it’s not likely’. She said, ‘things could change. He’s only six, things could change but I imagine not.’ And in that moment, again, I faced the grief. I was relieved, don’t get me wrong, there is also relief.
I think there are two things here, one is that the grief keeps coming and that’s okay. It’s supposed to be that way. In comes in waves, as grief does. That’s the nature of it. The second part is, there can be other feelings as well. I was grieving but I was also really relieved and excited to go home and tell his big sisters, here is some good news that he won’t serve in combat. My daughters were actually really concerned for their little prince. It’s something that they worry about, so they were happy about that. We actually happen to have a neighbor whose daughter is deaf in one ear and he was working in intelligence in the army, so he said, ‘So, he’ll serve in intelligence.’ And I was like, oh yeah, there is more to the story.
As parents, we have these visions for our children. We have these hopes and dreams for our children and whether it’s discovering your child is hard of hearing or that your child has other challenges and that they won’t be able to fulfill your dreams, yes there is grief in that but it’s also okay, because it’s not the only story that is to be had.
There is this possibility that if we are able to embrace reality and all the emotions that come with that, then we are able to support our children in their story as they write their story and they live their story and they get to actualize their potential whatever it is. That’s theirs. It’s really a wonderful opportunity as a parent.”
LS: “Totally. And that you’re not the one who is writing the script by the way, hahaha.”
LL: “No, you’re not. You’re really not.”
LS: “There’s a moment of confronting that. You don’t always make all the decisions. Hahaha.”
LL: “That’s right. And that’s whether your child is hard of hearing or not. That is the nature of being a parent and I think something that I teach parents, is about reality. Between you and me, Lilach, and all of your listeners, I help parents grow up. And growing up is essentially coming to live in reality with what is and to be able to tolerate it for what it is. And that means that it’s not all good or all bad, but it’s gray and that we can live in it and it’s hospitable and it’s safe and I can not only just tolerate it, but I can actually grow in it. I can be productive. I can lead a meaningful life and have meaningful connections even if I don’t always get my way.
That’s what we are confronted with here when we discover that our child is hard of hearing or deaf. That is, I’m not getting my way here. And not getting what you want, is hard. I was just speaking to a client this morning, and part of her process is not getting what you want, and it’s really hard. She didn’t have a parent who said to her, this is what you want but you can’t have it. But it’s okay. I’ll be here for you and make space for you and keep you company as you negotiate and navigate all the feelings and emotions that are going to come up for you in that reality and your disappointment. You can’t get everything you want.
And that’s real and I think oftentimes, parents think that they have somehow failed. We very often jump to judgement. We judge our kids, we judge the system, we judge ourselves. That is fine. That is automatic, but it’s not reality. The judgments are real but they are not all a true reflection of reality. You haven’t done anything wrong. You are not a failure. Neither is your child or the system.”
LS: “Wow, I’m so glad you are bringing this up. The guilt is one of the things I hear a lot, a lot about from parents. Did I do something wrong during the pregnancy? Should I have known about this sooner? Did we make the right decision? Again, that goes with all parenting, #momguilt. But, how do we live with that feeling and also regulate and comfort and say, I did what I knew and did the best that I could and it wasn’t my fault. How do we come to that, what’s your advice for that?”
LL: “Through grief. Because acceptance comes through grief. To forgive is to accept is to grief. If anyone is familiar with the five stages of grief, that acceptance is the fifth stage and it’s all linear. These are the stages:
- Bargaining, like maybe if I did this and maybe that, and we sort of fantasize about different possibilities.
These four stages are the preliminary stages to come to acceptance. When we come to accept that this is it, then we can forgive ourselves. Then we can say, this is what it is, and it’s okay. And so am I because I am human. I can accept myself and the parts of myself but only if I let myself know that they exist: the part of myself that is angry, the part of myself that wishes it was different, the part of myself that is so sad and the part of myself that doesn’t want to believe it’s true.
Let me tell you as a mother, they come up for you whether you like it or not, they’re going to come up. It’s whether or not you are willing to pay attention to them. And say to yourself, this is real and I would even encourage you to share it with other people and say, I’m so sad or so angry. Seek out people in your life who can make space for that and can nod. Just like you would step into a home where someone is grieving, you would just make space for them because there is nothing you can do about it.
Guilt is a manifestation of our thoughts that say, you should have or you have to. Those are not necessarily true. Guilt is not always true. We need to be able to reflect on those thoughts and say, is this true? Is this true or is it my way of distracting myself from the grief. If I tell myself, I should have done something different, then I don’t have to pay attention to how sad I am that I didn’t and how helpless I feel.”
LS: “Oh man, helplessness. That is a big one. I think that’s exactly why I feel it’s so important that people who are listening to this podcast and people who are googling the things and looking at blogs and connecting and doing all these things, you are looking for more, because you know that you are not going to stay in helplessness forever. First of all, you can’t because your kid(s) need you. So, come on, come with us. Let’s get through this. But also, you know.”
LL: “Yeah. Yeah, I’m happy to hear that you offer coaching to parents because I think it’s really important that that service is available to parents because many parents need that and it’s nice to know that what you need is out there. You just reach out and take it. If you don’t know it’s there, you don’t know it’s available to you. But it is available to you and it’s important that parents have that direct one on one support, really someone holding your hand.
I happen to be very lucky that I got this phone call this morning, just before we spoke Lilach. Just before we spoke, this woman called and said, hi, it’s so and so. And I was like, who? I’ve got to chat with Lilach in five minutes, what do you want? Hahaha. She was a very sweet woman, she says, ‘Is this your son’s name?’ I made the connection very quickly. But she said, ‘I got your name from a woman at the organization here.’ I said, ‘oh I know you. You work in the school and tutor the kids and support the kids and really hold their hands…’ And in that moment, I felt so much at ease because feeling alone is so common, (especially) whenever your child encounters a challenge.
I run The Motherhood in the Making Community on Facebook so that women who face challenges with their kids can come in and say, I’m not alone, right? Because it’s so important, it’s so valuable that we don’t feel alone in it because first of all when we are alone, we are triggered, we are frightened and we are less likely to feel safe to make space for what we need to make space for so that we can come to acceptance and then make space for our child. So, I was very grateful to get this phone call and I’m very happy that you offer coaching to parents, because I think parents deserve this. In and of themselves and their children deserve parents who feel solid and secure and just to hold your hand through it.”
LS: “Another thing I wanted to say about grief, it’s really like this spiral. Every time you go through all the stages, then you kind of start all over again about the next thing. You do the baby stage, and then you’re like okay I understand babyness. And then they are toddlers, and you’re like okay, now we are doing communication and we are doing what kind of educational placement and friendships and play…”
LL: “And then you move to tantrums and toilet training.”
LS: “Oh my Gosh, yes, do you want to talk about toilet training. Ugh.
Exactly. And trying to get your message to get across and getting frustrated that you can’t. Then you move to school age and you’ve got all the school things, bullying, academics, pressure.”
LS: “Gosh, yeah. And then you get to teenagers. Yay. I don’t know anything about that yet.”
LL: “I can tell you. It’s like having toddlers again. Hahaha.”
LS: “Aha! And then I think also about being an adult parent to adult children is a whole other story all over. It’s not even the whole in-law thing, which is also, like once you are in a relationship and then you are dealing with someone else’s family. So, there’s a lot. It’s called life, man. Okay, you are going to go through all the stages and every day is a new making and a new grief and a new acceptance.”
LL: “That’s right. Ultimately, our job, I say to parents, is to take responsibility. Ultimately, I have to take responsibility. I have to take responsibility for my children. I have to start by taking responsibility for myself. Taking responsibility doesn’t mean what we think, that responsibility means being good. We associate it with being a “good girl” or “good boy”. Be responsible, don’t mess up! We think of responsibility often in our performance and achievement.
I’m talking about being responsible for myself. That means that I am response-able, I am able to respond. Being able to respond to a situation means that I know that I exist. To exist means that I am okay with all the parts of myself: my wants, my needs, my wishes, my desires. All of my emotions, all of my automatic thoughts and judgements. I don’t judge them for being there. I’m okay with them being there because I’m accepting of myself. That’s what it means to be responsible.
When we are responsible for ourselves and we are responsible for our children, it’s our responsibility to also speak for myself and say, it’s my responsibility to support my child. I’ll say, to support my child in the way that I wasn’t supported which makes it a lot harder if you didn’t have the modeling, not just the behavioral modeling but also the emotional experience that we all know, it shapes, right? We all know it cognitively in this day and age that our early childhood experience shape us in the future. It’s whether or not I’m willing to take responsibility for it and to say, well I guess this is who I am. Own it and live it and say, I really struggle with sadness because when I was a child, I wasn’t allowed to be sad. So, I’m responsible for myself now and so I go and get the help that I need so that I can feel safe, feeling sad.
When I discover that my son is hard of hearing, I can be sad. I can feel sad. I can ride that wave, let it take me to shore. Stand on solid ground and catch him. Because he’s going to come next. He’s also going to have his grief. He’s also making sense of all this and I need to model to him, it’s okay. It’s okay.”
LS: “What happens when you are in a wave and you are flailing and flailing? That’s not a good place to be. You’re going to be stuck in that storm. Sometimes you need to let it carry you.”
LL: “Right. Right. Lilach, I want to add that we do flail. We will flail but what’s important is that we can observe ourselves in the flailing, and that we can also hold space for ourselves and be that comforting adult voice that perhaps you’ve never had, but can recreate. Take responsibility, recreate it for yourself and say, it’s okay. You are allowed to flail right now. You are allowed to feel this. Breathe through it. Ride the wave. Make space for this. I think that’s why coaching is so helpful because you can have someone reflect that back to you and say, it’s okay. It’s totally okay that you are feeling this way. This is to be expected. This is what happens when you discover when your child is hard of hearing. This is what happens when you suddenly have to navigate a whole system that is completely foreign to you. That’s what happens when you feel scared. You flail a little bit but it’s going to be okay. So, you can have this comforting voice that says it’s going to be okay. But like you said, we have to do that so that the wave doesn’t overtake us, that we can stay on it and ride it.”
LS: “Right, and to follow this metaphor even more, I love metaphors. Sometimes, you are in the middle of a hurricane and you need a boat. You need a helicopter. It’s not always like surfing weather. Sometimes, you are really hit with something bad.”
LL: “You know what’s so hard and it’s a bit of a play within a play, Lilach, parents who get hit really hard, part and parcel of why they feel it so hard is because they didn’t have anybody there to help them, and negotiate the storm. So, the storm seems a lot bigger to them than it really is. Not to say that it is not, as we are saying now, not to say that it is not sad and disappointing and upsetting and unfair and all those parts. But it can feel differently for different people.
For some parents, it feels so big because no one was there. What happens is that because it’s so big, what parents think unconsciously is, well I guess this is just proof that there is no one there. So, I’ll be a voice to the listener who needs to hear this. That’s not how it has to be. You don’t need to go through this alone and you don’t need to suffer alone. You can call for help. And there is help to be had. Even though, in the past, you might have sought help through your non-verbal communication and you weren’t heard, because often these perceptions are formed very early on. You weren’t heard, you weren’t seen, you weren’t recognized, maybe you were dismissed or maybe you were put down.
So, you’ve concluded, well I guess I’m on my own here and there is no one I can trust. That’s not reality but it feels real. It’s not reality. In reality, I can speak to you from the other side. The world is a nurturing place. It is a hospitable place. It’s a place of great potential and while it can be scary sometimes and it can be predictable, it is still a place worth participating in and finding connections in. To participate in this world is to connect in this world. It’s not to be alone. So, if that seems frightening to you, I understand it. Trust me, believe me, hahaha. You may not trust me but I hope you can feel me when I say, I know all about it, but it doesn’t have to be that way.”
LS: “Yeah, I think we can all connect to that.”
LL: “Yeah, and we can all take responsibility for ourselves as adults and say, it doesn’t have to be this way. We can recreate something new for our children, especially for our children who are facing the challenge of hard of hearing or deafness that, hey, you’re not alone. Let me show you that you’re not alone.”
LS: “When you first brought up the word “responsible”, my immediate unconscious, subconscious, whatever you want to call it, felt this feeling of like, oh, I’m responsible, I have to do everything myself. It’s all on me. And I watched myself think that and as you were talking I was like, wow, I still kind of hold that feeling that I have to do everything myself and I’m responsible and no one is there for me. Actually, the new definition or re-invigorating this truth that responsibility means it’s my job to help myself, doesn’t mean I have to do everything myself. Wow. That has been a great lesson.”
LL: “Yeah, well you’ve given me a definition now that being responsible, as you’re speaking, I’m thinking, yeah being responsible is exactly what you said. I was taking a note here and wrote, being responsible is allowing yourself to feel safe in connections. I’m allowed to feel safe in connections. I’m allowed that even though I haven’t in the past. I’m allowed to feel safe in connections. Feeling safe in connections, I’ve learned, is actually asking for help, saying I need this. I want this and to feel okay and safe to express that. Even though my automatic expectation is that it’ll be like, Oh god, you are so needy. Or, what do you want from me, don’t bother me, or crickets and no one is there to even hear me.
Different parents have had different experiences and their experience of being parented. And now as adults, we have a choice to make it even, and as we said, the responsibility to allow ourselves to feel safe in these connections and in these circumstances, reach out for help. Asking for help is not dangerous. It is safe to ask for help.”
LS: “I wan to put something out in this part of the conversation about who you ask for help from. Sometimes, we repeat and repeat and repeat the same story and don’t recognize the insanity of that. Basically, I’m talking about how, in times, we reach out to people who are our family, or our close friends, whatever doctor you had on your insurance or whatever audiologist was in your neighborhood, kind of the automatic whoever is there. It’s not necessarily the person you need to reach out to. It’s not necessarily the person that can offer you the help that you deserve, to be this person that can be a mirror that’s outside of you.
I have to plug in right here, therapy. You know, you’re a therapist but from my perspective as having been in therapy, it is transformational to be like, you don’t know anything about me and I don’t need to see you outside of this hour, but you are totally here to help me. Just that, about the relationship, and I’ve talked about this on the episode, All About Therapy that was an episode with my husband who is a family physician. We talked about how important that it is to know that that’s out there. I think therapy and coaching as well and these kinds of frameworks and programs that show you something different. It’s very awesome to go to your mom or your grandma or someone who is in your life that’s a constant and hopefully a source of nurturing. But A), that’s not the case for everybody and B) this is a new story. The topic of deaf and hard of hearing, of audiology, you might want someone who knows what the number 30 means or what the situations are so that they can really advise specifically.”
LL: “Right. But more than that, what I think you are saying as well, in light of invoking therapy, is that what we want is somebody who doesn’t take up space but gives us space. Someone who is going to make space for us and not take up the space. That’s what I want to give to my child. That’s what I want to ultimately want to provide for my son. I want to make sure that my stuff doesn’t fill up the space so that he can have space to just experience it and to be able to encounter himself, because this is all new for him too. He ultimately, psychologically speaking, developmentally speaking, needs to be able to encounter it and feel safe to do so. The only way is for me to get out of the way, haha, and not take up the space and push it out of the way because it’s too much, my feelings are too big here. It doesn’t mean that I’m not allowed to have feelings.
When you spoke about infants and infancy, wow, you were remembering what it’s like to have an infant who just takes up everything. It doesn’t mean that my needs and wants went away. I still had needs and wants. I needed hugs. I needed to be listened to. I needed to complain. I needed to be fed. I needed to pee. Haha. My wants and my needs didn’t go away, but considering the circumstances, there was another person in the relationship who needed and wanted more.
That’s what happens in therapy. My needs and wants don’t go away. I don’t disappear as a person. But my client will step into the space, it’s their space. This is your hour, this is your space where we deal with what’s happening for you. I’m still a person, I exist, but it’s not about me. This isn’t about me. And that’s something that we want to do in some ways, mimic for our children. Ultimately, I think what’s important, what we are speaking and the idea of connection and allowing ourselves to feel safe in connection is synonymous to allowing ourselves to want and to need. Very often, we don’t feel safe in our wants and our needs. Unconsciously, we will make choices that reinforce our belief that our wants and beliefs are not okay.
So, we’ll just accept that the doctor in our area, or the audiologist down the street or what’s in our insurance and we won’t pause and say, wait a minute, what do I want here? We’ll tell ourselves stories like, oh, it costs too much money or I don’t have the time. While there may be some truths to it, like it’s more convenient this way, well there maybe truth to it but ultimately we need to ask ourselves, is this what I want? If money, time and convenience wasn’t an issue, what would I want? Whether or not, I get what I want, it’s still important to acknowledge what I want and what I need.
Whether you are seeking support for yourself and your child who is diagnosed as deaf or hard of hearing, or any other issue in life, especially as a parent, because your role is so important in nurturing your child’s ability to feel safe in connection, is that we need to start with ourselves and ask ourselves, what do I want and what do I need. That can be very scary. That can be very scary, nevertheless, even though it’s scary, it’s still important. It’s okay to feel scared, of course you feel scared. No one ever asked you in fact, they would ignore you or put you down or what have you, that doesn’t mean they go away.
That doesn’t mean they go away and it’s important now more than ever to ask yourself, what do I want? What do I need? And to take the steps necessary, whether it be therapy, coaching, and you reach out to Lilach and you get her support, whatever it is, it’s important that we ask ourselves, what do we want and what do we need and acknowledge that the inevitable and the natural, normal if you will, waves that we ride in this process and to make space for them.”
LS: “Liba, I want to ask you about specifically the topic of family that are in their own story, at the same time that you are going ahead and doing everything you need to do. (For example) your mother-in-law will make a comment, ‘they don’t need that, they hear me just fine.’ Or a spouse who doesn’t want to join appointments, you know all those things. Another thing that is also very common, something we hear about that the mom is ready, is kind of doing all of this work of feeling the feelings and learning and Googling and studying and trying to do what’s right. But they, in their life, don’t have the support and they are now also in an advocacy role, which is something that I teach in my workshops as well, the advocacy, the F-I-G Method. So, I’d love to hear if you have some advice on how to navigate some of those conversations.”
LL: “Yes, well, I think what’s really important, I’ll speak more on an umbrella sort of macro here, is that we can’t control everything. I can’t control what my mother-in-law says or does.”
LS: “I need that on a bumper sticker…”
LL: “I can’t control her. I can not control her but I can control the way that I respond. So, that can be hard because what I would respond with is, and this is what I teach in the Five Step Framework, step four is to respond. When we respond, we need to be clear about what we want and what we need and we need to communicate it. I like that you use the word advocacy because we need to be able to advocate for what we want and what we need, at least in my framework. I’m really curious to hear about this advocacy and the F-I-G Method.
(In answer to your question), to say, I acknowledge your point of view. He hears you just fine but here’s what’s happening. I’m the mother, so here’s what’s happening and I’m gonna advocate and I’m going to stand up and say, here’s what’s going to happen. If you take issue, that’s fine. I’m happy to talk to you about it, I know it’s hard to wrap your head around but please don’t do it in front of my son so it doesn’t confuse him and it doesn’t scare him.
I might turn to my husband and say, ‘I know this is hard for you because you haven’t been going to all of the appointments. And I know this is hard for you.’
Sidebar, it’s hard for him, just so you know ‘Mom’. It’s hard for him too. My husband is like, ‘he’s my boy…’ He also comes with his own perspective of him being ‘the kid with the hearing aids’. When we grew up in the 90s, kids who had hearing aids, it was not cool. It was not cool at all. I had glasses and it was not cool. That was the story that we had. And I had my own reaction to that. I think what happens Lilach, is that we have our own reaction to that, our own hurt and threat, like screw you, that’s my son you are talking about.
Again, it brings us back to pause and reflect what’s going on with you, connect with what’s happening for the other person, this is hard for my husband and then respond and say, look, I know this is really hard for you. I think it’s really important #IwantIneed for you to come to the next appointment.
Tomorrow, my son is going for his third test and my husband is taking him. He is going to take him and it worked out with the scheduling. Also, I said, I think it’s a really good idea for you to have this opportunity and it’s also great for my son to have you there so he knows you are on board too and he can have this experience with everybody. His world is full and there is no mystery around it. There is no mystery or secrets or we have to protect anybody from this. Everyone knows what the reality is and it helps him come to terms with the reality as well.
As I was saying, I can’t control my husband’s reaction to it. I can’t control what he does. It’s not in my control and this goes for anything, ladies. This is for anything. You can’t control anyone else but you can control how you respond to it. To respond is really important to know what your wants and needs are and to advocate for them. That’s the real challenge, in light of what I said earlier about our own conflicts around our needs. We have conflicts that doesn’t feel exactly. Part of us knows that we want and need it. The other part of us will say, don’t want and need it. It’s dangerous, you’ll be left alone and rejected if you do. So, we have to come to terms with that and to resolve that conflict so that we can confidently and safely say, this is what I want, this is what I need. ‘I need to hire Lilach’.
I need you to not say this in front of my son or I need you to go to this appointment, what have you, want, need, whatever. That would be my contribution. Those are my thoughts on the matter.”
LS: “I also talk a lot about this choice of switching providers, getting a new doctor, even changing your child from one school to another. There’s paperwork, it’s a hassle, it’s not an easy thing to do. You make those kind of decisions on purpose, but if you don’t, then it’s just one thing after the other and you may not be getting what you want.
So, I love the framework of knowing what you want and that’s my G in the F-I-G Method. G is goal, you have to know what your goal is. Sometimes your goal is to educate and you need to explain to mom, here’s what the hearing loss looks like and explain what that means. Sometimes, your goal is to leave the party where your friends are being insensitive and not paying attention to what your kid needs and you don’t want to deal with them anymore. So, you leave the party. Your goal right there is that you don’t want to be in that situation any more. Other times, your goal is to care for yourself and notice that whatever is happening here, is not even about your kid. It’s totally about you.”
LL: “Right, that’s really important.”
LS: “When you are in an advocacy meeting, in the United States, you have these IEP meetings to get them services, you come in to that meeting with your goal. You know what kind of therapy you want, you know what frequency and you know which provider is going to give it and which one is not. So, you know your goal and then you come in to that meeting being a totally empowered person in that situation, in your advocacy.”
LL: “Yeah, and you feel safe. Even though there will be emotions to ride in those meetings, because they are not always pleasant, you can stay on the board. You can stay solid and you can make space for what comes up for you but still be very clear about your goals and about what you want and what you need and advocate for them. That ultimately, is what it means to take responsibility, that I can feel safe in connection. The connection is with myself, my child, with my partner, with the world at large, with my purpose, with my meaning and it is really important.”
LS: “I’m so glad that we had this conversation.”
LL: “Yeah, me too.”
LS: “It’s going to continue. It’s something that on the podcast and with each other, we can continue these questions because, that’s the whole thing. When you study to be an audiologist, you learn very specific and intense training about hearing, hearing loss, devices, and I am always bringing in the counseling and bringing in the additional emotional parts of what this is. How it affects your children, to each other, the siblings. Who gets more attention, less attention. Labels and all that. You and your partner or spouse and how you two are handling it. It’s much bigger. It’s much bigger.”
LL: “Yes. Yes. Because as humans, we are much bigger than our bodies. We are not just in the medical field. We look at the body. We diagnose the problem and we treat the issue, which is great and I’m happy for it but we also sometimes in the medical field, the mind is forgotten.”
LS: “Let alone the soul. Okay. Haha.”
LL: “Yes, yes, yes.”
LS: “You gotta bring that back in.”
LL: “Yes, absolutely. There is something much greater than the body, things that cannot be observed and are very unique and individual. And that is really the seed of connection, the part that goes beyond, the parts that are beyond our performance and our behavior and our actions or what our body does or doesn’t do but the deeper parts of our Self. I often say, ‘Who am I?’ To do that, in order to connect with that, we connect with not just our bodies and our physical selves but our emotional selves and our spiritual selves. Things that are beyond us. That’s where connection lies. If we feel safe enough to do so.”
LS: “If people want to find you, learn about what you do, where can they find you?”
LL: “If someone would like to learn about me and find me they can go to my website, libalurie.com. Or, if you are on Facebook, you can come into the Motherhood in the Making Community if you are a mom who wants to work on herself and build better relationships. You can certainly join me on the Motherhood in the Making Community, your first protocol is my home page, libalurie.com.”
LS: “Excellent. And it will also be linked in the show notes as well as a full transcript of our conversation today at allaboutaudiology.com.
Thank you so much Liba for joining us today.”
I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.
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