Read the transcript here

This week on the All About Audiology podcast, Dr. Saperstein interviews Janna Cowper. Janna, who is hard of hearing, also has 2 daughters who are HoH themselves. Janna is the founder of Hardofhearingmama.com. She shares her own story as well as education posts on Instagram. Currently, Janna is studying  at Gallaudet University with the goal of becoming a Deaf Mentor. 

This week on the All About Audiology podcast: 

• 3:20 – When one is writing reports for clients/patients, the wording and labeling used in the introduction and summary to describe this child, really matter.

• 9:00 – When kids see their parents advocating for their needs, they can learn to advocate for themselves too.

• 12:00 – If accommodations are helping to support a child, do not take those accommodations and such access away.

• 21:00 – Medical professionals are experts in diagnoses, therapy, and best guidance;  clients are the experts on the actual lived experiences of these diagnoses. 

• 32:00 – Before speaking about milestones and goals, professionals can repeat parents’ requests so that the parents know that they are initially being heard.

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

Connect with Janna:

Janna’s Instagram Page

https://hardofhearingmama.com/

• Dr. Michelle Hu @mama who hears
• Chloe Tompkins
• Gallaudet University
• https://hardofhearingmama.com/affiliate-links/

• The Ups and Downs of Tara’s Communication Journey – Episode 85
• All About navigating deaf identity with -Episode 86
• All About Advocacy Organizations – Episode 59

Transcript:

Dr. Lilach Saperstein:

Welcome back to the All About Audiology Podcast. I’m your host Dr. Lilach Saperstein, and on this show we talk about all things that are related to your actual experience and your life. Not just about hearing loss, audiograms, and devices, [and there are] so many tips and tricks we can share. But what I love to bring up for us also is this other part of the journey that’s about identity, and advocacy, and connection, and communication, [and] the stuff that actually matters, like how to talk to our kids and how to make them feel like they’re super amazing, important, confident. And also that we should feel that way as parents in general and as professionals as well.

Today on the show, I’m so excited to be joined by Janna Cowper – hard of hearing mama. You for sure know her on Instagram or from hardofhearingmama.com. [She has] so many amazing posts and conversations, and I just love being in your sphere and seeing what you’re creating. So I’m really excited to dive in. Welcome, Janna to the show.

Janna Cowper:  

Thank you so much. I’m really excited to be here.

LS:

So you, yourself are hard of hearing and you also have children who are in this same experience. So I’d love to hear how your experience growing up is different than what you’re providing for them. I think that contrast would be an interesting thing to go back [to reflect on]. Also looking into the history, how things have changed over time, but also will be hugely valuable to our audience. And as we all know, the majority of hard-of-hearing children and deaf children are born to hearing parents who don’t have any experience or understanding (certainly not personal experience for the most part). So I think it’ll be fascinating to hear, take it away.

JC:

That is a loaded question. There’s a lot in there. So I’m going to try and break it down. And I’ll just talk about some key differences between when I grew up and the age my children are growing up in. We are in different times of life, the world, centuries, the way stigmatas are seen are different, the way hearing loss and deafness is looked at is different. [And] even if there’s a lot that hasn’t changed, there’s a lot that has. And that includes technology and that includes awareness and education. And one of the key differences is just simply who you’re surrounded by. My hearing loss is hereditary; it’s on my mother’s side of my family. And it gets passed down. If I hadn’t passed it down, it would never be packed down. But if I do pass it down, my kid can potentially pass it down. 

I grew up in a time where, in my family chain, they were never really heard of a Deaf community. So there was always someone in the family with a hearing loss and so their view is [that] you need to blend in. You need to be like everybody else; wear your hair down [and] cover your hearing aids because you don’t want people to see it. You don’t want people to know [you have hearing aids]. So this was ingrained in me as a child. Now for my children growing up [I instill in them that] you are hard-of-hearing, you are deaf. This is who you are and that cannot change. You don’t need to hide it. Be proud of who you are: wear your hair up, decorate your hearing aids, get beautiful colored ear molds or spunky colored ear molds, however you want to refer to them, [and] celebrate it. And those are just two different narratives being formed in the way we’re growing up. Now I’m not saying what my parents did was wrong. That’s what they were taught. And I just happened to grow up in a way where I learned things.

LS:

This brings up for me the concept of identity first or person first. I actually recently taught this to my students in their oral rehab university level class. And the assignment was [to] go research these two approaches and tell me what you think. [And I asked them to answer:] what’s your opinion of which one is correct. And of course the answer at the end is context dependent. It’s case by case and there isn’t necessarily a right one. It really depends on so many factors. But the idea in short of identity first: is saying that I am hard-of-hearing or I am deaf 

and person first: is saying I am a person who is hard of hearing or I’m a person with hearing loss. This whole linguistic semantic way of getting very nitty gritty with the way people describe themselves, the way professionals talk about you and about your child. It’s very loaded, and it will change over time. So I think something you’re describing is sort of within that debate.

JC:

I mean, it’s interesting to look at it that way. I have to confess as someone who has grown up being hard-of-hearing, or deaf, or with hearing loss or however 

LS:

Right, you start tripping up. You don’t know what to say.

JC:

Well, I guess if I’m being honest, I’ve never thought about the way I identify myself as identity first or person first. I know what you’re talking about. I know the concept of it, and maybe I should think about it more, but I guess I’ve never thought about it that way. I am deaf and I am a person who is hard-of-hearing. They both for me are applicable. And so I haven’t given a lot of thought to the argument, and for my family personally, about whether it’s person first or identity first.

LS:

And I actually think that’s one of the major sensitive points/issues that people focus on that, like what is the wording, and start having fights and [then there are] Facebook threads that go on and on and on of people arguing about what words we are using and how we should approach this. *sighs* And I really think there’s a lot of grace in both directions. [And] that it doesn’t necessarily matter the exact wording and it might change. It probably will change over time.

JC:

I think you said two true things. It probably will change over time. And you said just a few minutes ago that it really depends on the individual and their preferences.

LS:

Yeah, we were talking about when you’re writing reports for your clients/for your patients, what wording you use in the introduction and summary to describe this child really matters. It comes with them. These labels are important because they matter for what services they’ll have and how they’re seen. But I really want to always bring in the human side so I’m very grateful to hear that for you it doesn’t really matter. It’s not the point. So tell us a little bit more about when you were growing up. So this [condition] was in your family. It was part of the experience that was familiar to the people around you. Tell us more about that. 

JC:

Well, when I started talking about my family online, my intent was to talk about being heard of hearing and raising heard of hearing kids and the joy that comes with it [and] the activities we can do together [and] how we work on speech and language. And that was the intent. And once in a while, I’ll throw in stories about when I grew up and my access at school. And suddenly that topic kind of hit home for a lot of parents. Especially hearing parents who kind of wanted to understand what their child might be going through. So I started diving into that a bit more. And what I found in kind of having to think about the way I grew up is I had access in some places, but I didn’t have a lot of access. There was not a lot known about education. And as a child, you’re not thinking about your access. I can look back at it and say, ‘oh, clearly I did not have access.’ But as a child, you’re not thinking that. As a child, you’re in school, you want to go home, you want to watch TV and you want to have your snack. But when I talk about access to school I’m talking about things like I had an FM system. That is access, but technology has changed. Back then, in the 1980s specifically, FM technology is not what it is today. So for me it wasn’t really access. Basically it was a piece that attached to my hearing aid. I wore a box. The string between my hearing aid and the box was too short. I walked around lopsided and no kid wants to do that. I even had to sit lopsided; that’s how short it was. And then it was staticky. And then I got in that group to take away from that. And then you’re trying to get in that group to work with your telecoil. And, you know, no kid should be working that hard. And no kid is gonna hold their telecoil up and that was the 80s FM system. It was staticky. It had good intention to get the teacher’s voice to the student. But then if the students talked, you kind of had to figure out what was going on. FM system today, and not even fully FM systems, mini mics for my kid growing up today [such as] my kid in kindergarten – she got that accent of her teacher having a mini mic and it can be adjusted so that she can still hear other students around her. So she doesn’t have to figure out when to turn it off. That’s a difference in access. Another difference in access is education. When I was growing up, teachers didn’t know about accessibility options for hearing life. Some people had me sit in front of the class. Some people said I didn’t need to because I didn’t want to. But if I asked for extra time on a test because of noise [or] if I asked for help with things I didn’t understand, I was told that giving me extra notes or anything would be an advantage over other students. I know today, there’s still issues with that. But I know today, looking back, that I can advocate for that on behalf of my kids, because I couldn’t recognize that. So that’s just a bit of a difference. And I’m not saying that my parents didn’t recognize that, but today I have a network of teachers of the deaf and people who I’ve met and worked with. So if I need help advocating, I can get that and I know where to tap into and who to talk to. And if my kids can see me advocate they can learn to advocate for themselves. So one of the differences about advocacy is something as simple as asking the teacher to wear a Mini Mic and they say, ‘Oh, you need to wear your mini Mike.’ 

LS:

That is a very big difference in recognizing that the technology in itself has changed so much and overall awareness and understanding also has changed. So those two things combined. 

So what would you say are the challenges that your kids have now? The bar has gotten higher and things have improved. What challenges would you say they’re facing or that you’re advocating for? Now that all this is available, we got to get people to adapt and use it.

JC:

For clarification, my kids are oral and they do attend a mainstream school. They do have a bit of ASL, but they mostly choose to speak. So the challenges are still in education in that hearing loss is a spectrum. If my child understands you in one room, they may not understand you in another room, my child may understand one peer, their voice but not another peer. Or even [with understanding] teachers my child may understand one teacher better than another. And that education about the fact that there’s a spectrum. My kids are growing up during a pandemic where we wear masks. I advocate night and day for clear masks. And yes, I am aware of the truth that they are not easy to wear out there. They get spit on them, they get foggy, they’re not comfortable, they get sweaty. And so I don’t ask people to wear clear masks all day. I say ‘can you wear them during story time and circle time? Can you wear them at moments where you are giving them very clear instructions and not when they are playing because I know they can lower their masks. But getting people to understand why it’s so important for them to wear clear masks is really difficult because my kids are oral and the wording is that they do well and I put that in quotes they do well and the truth is, they do do well. They do very well with the tools they’ve been raised with. We’ve worked a lot on language, both spoken and ASL and the problem is when people see that they do well. They say well, they don’t really need clear masks [because] they hear me fine. They don’t really need that access because they’re doing so well. And that is an issue because suddenly accommodation starts seeming like not as important without realizing the accommodation allows them to do well. People don’t see that they learn to figure things out in the way that ‘I see where all my classmates are going. I see what all my classmates are doing. I am figuring out how to make things work and especially at preschool age, and even my oldest at kindergarten age, is not going to show so much. But I worry about when they get to grade 2 and when they get into grade 3 and other things start to come into play in education. So I am always advocating to make sure they understand that they have access.

LS:

The idea of listening effort and listening fatigue.

JC:

Yeah.

LS:

Getting tired from listening. I love Dr. Michelle Hu @mama who hears, who has been on the show. She has the one infographic of the duck paddling furiously under the water but above the water, everything seems serene and calm. And I wonder if that’s your experience too as an adult. 

JC:

So I love Michelle as well and that infographic I know exactly which one we’re talking about. And it’s 100 percent true and I think one of the things that’s true is the duck paddling underwater that’s also subconscious. As an adult I’m so used to all these things I do to figure things out. I’m not even aware that I’m doing them and then if I think back about them, it’s like yeah, I am absorbing a lot of information.

And just to give you an analogy. Like when you think about how [the field of] audiology: [when] sound vibration comes into the outer ear, the middle ear, the inner ear, and it’s like instantaneous that you hear. You don’t realize that it’s all doing all that stuff but it’s doing it. It’s  going through a lot of process[ing]. But you’re not thinking about it. And the same thing – all the work that we’re doing. We’re not like thinking I’m doing all this work, and I’m figuring out all the things, but if we think back about it, it’s like yes, we are doing a lot of stuff to essentially accommodate a hearing world by wearing hearing devices, by speaking, by reading lips, by putting sounds and voices together. 

Your recent reel about learning about the ear. I was excited about that. Because you know I like to talk about the ear and how it works, and all the parts, and marvel at how many things are happening.

JC:

I seriously sit there in my audiologist class with my mouth open.

LS:

And that’s just the beginning because then the processing of putting all that information together at the brain level. Oh my goodness.

LS and JC:

*laughs*

LS:

So yeah, it’s very important to realize that even if kids are doing quote on quote, well, that doesn’t mean they don’t deserve all the access and ease. We don’t want things to be any harder than they need to be. And that’s an important thing to bring up. I wonder about teachers who are educated and who want to learn and do well and bring it into the classroom. What are some of the things that they’re missing? Again, I feel like this conversation is about raising the bar [and] going above and beyond.

JC:

Well, that’s a tough one to answer because there [is a chance by] stepping into when I advocate I might be asking a teacher to change their curriculum, or I might be asking them to change their goals. One of my child’s preschool teachers said she wanted to teach the kids a bit about ASL, and we can get into the whole argument of who should be teaching ASL but I’m not going to. [Instead] I’m going to say if you want to show them ASL, I bought her flashcards of ASL letter shaped hand cards so she could hold them up. Because, hey, if you want to please go ahead, but I don’t want to overstep my bounds as a parent to the fact that you were a teacher. And so we were sitting in circle time the other day, like I came in with my child; she didn’t want to let me go. She’s like ‘okay, just come join our good morning song.’ And it’s like: “Good morning. Good morning,” and they’re clapping their hands and it’s like “happy to see you.” Very simple words. Happy to see you. Good morning. And I’m like, these are really simple signs, and in a perfect world. We could collaborate with a deaf educator or a teacher of the deaf to maybe talk about how we can include some simple signs in these good morning songs instead of just clapping our hands. That’s language for everyone. And that becomes a very fine point of advocacy and trying to take over a curriculum. And that is something I’d have to discuss more with a school and that just happened very recently, like yesterday recently, so I haven’t figured out how to approach that, but there are things I see. And yeah, it would be great in a perfect world if there could be a teacher of the deaf or deaf educator on every campus to just say, ‘hey, here’s small things you can do to just add some extra language to your curriculums.’ 

LS:

I have to shout out Chloe Tompkins who is a music teacher and is hard-of-hearing and does sort of ASL combined music classes in libraries and birthday parties. But she’s got a YouTube channel. We love her YouTube videos that she has [including] all the simple singalong songs for kids, like toddlers and kindergarten age. And we really love watching them with my kids too. So she’s doing that. So when I saw that model, I know exactly what you’re referring to. And maybe that’s a suggestion – if I may – to share those videos with the teacher and say, like maybe something like this or maybe incorporating this kind of gentle introduction that isn’t like I’m telling you what to do, but let’s collaborate.

JC:

I probably would take that and send that to the school and just say, hey.

LS:

Yeah. I want to hear more about the classes you’re taking and the program being a mentor. Oh my goodness, tell us about that. My background is that I’m a graphic designer. That’s what I do. I run a small creative services business. And during the pandemic when my kids were home, they are aged 3 and 6 now but at the time they were 1 and 4; they were really young. So because a lot of my business subsided with the pandemic, I worked in a lot of event spaces, and all the events were shut down. It didn’t shut down my business, but I was able to stay home with my kids, and that’s when I decided to start Hard of Hearing Mama. The one thing that’s been clear to me is I am talking about all these things. They are my personal experience that shaped my life and it’s been fulfilling to talk about it. But more than that, to have people reach out to me and say things. [For example] I had one person say ‘you explained something that I never understood about my mother and why she reacts a certain way with interruptions. Thank you for helping me understand that. I now get along better with my mother. I’ve had kind of funny things. I wrote once about why I eat quickly because I don’t hear what’s going on around me. So I may as well just be eating, and it was a reference to when I was young. And I had a parent reach out and say I can’t understand why my seven year old eats so quickly and even though I’ve been asking them to slow down, I never thought about the fact that they might not be understanding what’s going on around them. Thank you for that. Then I have other Deaf individuals reach out to me and say I am on my journey but thank you for clarifying so much, and why I do something that I didn’t even think about. And I realized I want to talk to people more and there’s a lot of things people don’t know about hearing loss. They don’t know about growing up [or] about their kids growing up what they might be thinking. There’s a lot of people learning to understand themselves. This stigma is out there. There’s a lot of stigma out there [such] that the spectrum of hearing loss is not a good thing, or it will lessen your life quality, or something. And I’m like I really want to challenge that. It’s not to say that there aren’t difficulties navigating the hearing world and how to ask for accessibility while you’re also providing accessibility, sometimes in the form of speaking and in the form of hearing devices. But I want to work with people more directly so that they can improve their relationship. They can improve their way of thinking. And someone even said to me today, I wish I could have your outlook on hearing loss. And I said my outlook was 40 years in the making. It’s been a journey [vs] someone who more recently had a diagnosis. And like it’s okay for you to not be happy with this. And it’s okay for you to go through these emotions. It’s okay for you to feel these things. While I am proud of who I am. There are days where I’m out with a bunch of people in a noisy place. And I’m not happy with it either just because of the circumstance that I have placed myself in. So it’s okay to feel your feelings and all that. And I wanted to work with people. 

So back to the original question about a program I’m taking, it’s at Gallaudet University, and it’s to be a peer mentor for the Deaf and Hard of Hearing. The program itself is geared [at] adults being peer mentors to adults. But I do also want to work with parents of Deaf and Hard of Hearing children to help in that journey. And basically to have a credential to talk to people about hearing levels, hearing loss, deafness. And I would like to somehow change what I’m doing to focus more in that direction. So that’s why I started that program. In it we talk about the history of hearing loss. We talk about audiology, we are going to have a class down the road about personality traits, which I cannot wait. And so it’s been interesting so far. I’m in my second semester. So there’s not a whole lot that I can give beyond information of two semesters, but right now we are on basic audiology. 

LS:

It is incredibly valuable. I don’t even know the first time I heard the expression Deaf Mentor well after graduate school. Like not even within the program of being an audiologist. It may have been mentioned you know sort of in passing. But the idea that the experts on this topic are the people who have lived experience. And yes, audiologists go through incredible amount of training. And we know a lot about devices and diagnosis and testing and of course also balance and tinnitus. And I’m a very proud audiologist. *laughs* But I also think that there is not enough understanding of the limitations of the expertise in audiology and that it doesn’t carry over into what is it like to be in that restaurant and be in those situations that are difficult. And having a peer mentor or an adult for your child, right? Or any kind of setup like that is so missing to me. Like once I had this big mindset shift through the podcast and talking to so many amazing people and understanding that the experts here are not the professionals only. Everyone has their slice and there’s expertise. But parents, you’re the experts in your children and talking to people who have grown up and experienced what your child is going through is so insightful and so valuable. So if anybody out there is sort of feeling lost in the flow of information coming only from doctors, and audiologists, and speech therapists, and educators who each have a lot of wonderful things to say – don’t forget to add to that team and reach out and seek because no one’s going to hand it to you.

This is the kind of thing that in advocacy, [where] you need to seek out a Deaf mentor like really try and see what services are there to connect with someone who knows what this is like beyond the professional sort of medical, educational [advice] but also the real life experience. 

JC:

I agree with all that but I do have to add a slightly funny story in that, I have talked to a few people. And especially understanding more of the intricacies of audiology, I randomly have met a number of people lately who are like, ‘I know I have hearing loss. And so I didn’t want to pay for a hearing aid. So I just bought this hearing aid online and I did an online hearing test.’ And I’m like no! *laughs* What if you have something blocking your middle ear? What if you have conductive hearing loss? You can make your hearing worse. You need to go to see an audiologist. 

LS:

Yes!

JC:

And that’s why they teach audiology in peer mentoring. So we can say these are all the things that could possibly be happening. This is why it’s important that you see an audiologist even if you end up buying a hearing aid online, which I still don’t think is right, but at least you know your hearing chart, your hearing test, what your audiogram is. And you can make a really much more informed decision than just randomly saying “I’m not hearing well.”

LS:

Thank you. I appreciate that. Definitely, very good advice. I’m really a big advocate for people knowing what the scope is, the scope of practice, what’s within my expertise and what’s outside of. And when it’s outside of, then have a referral. But yes, definitely, of course see an audiologist. A licensed one, and if you have children, hopefully a pediatric one to really try and get exactly what you need. And absolutely get the highest level of care that you have resources and availability to. Absolutely, good point. Good point.

And another thing I wanted to bring up for our listeners is the amazing resources you have on the website of so many activities, games, toys. And how to use them from a parent’s perspective seems completely helpful. Instead of like what do I buy? How do I use these things? So talk a little bit about all those posts and how that came to be. What advice do you have for people?

JC:

I have to credit a lot of those posts to the teacher of the deaf and hard of hearing that my kids had. I will say and I will admit that when they were born, I didn’t think we needed early intervention. I’m like well, I’m hard of hearing. I mean, I know everything there is to know about it. What could I possibly need to know? It turns out [I needed to know] all the things you don’t think about when you’re a child and that includes access to language because I only knew what I knew, right?

So a lot of the activities I post are in language. I refer to them as spoken but they’re all spoken ASL or any sign language you can use to do any of those activities. A lot of them are based on work with a teacher of the deaf. In anything you’re doing, there’s language [such as] putting on your clothes, there’s language. [You can say] ‘we’re putting our pink socks on and not making it an activity, it’s fun. But in anything you’re doing that’s fun, there’s always language. So it’s a way to insert something that you want to work on. [Or] Vocabulary you want to work on. I’ve had fun with my kid, and that’s why I started the whole thing. It’s like fun and it doesn’t have to be an exercise [you tell your] child ‘say the word (insert word here).’ You know it can just be in games. It can be in arts and crafts. It can be in music. It can be in getting dressed and brushing your teeth and eating dinner.

LS:

Or the letter cookie cutters for playdough or for cookies, but I saw you also had like the silicone molds or ice cube tray also for letters. So then that’s like a whole other sensory and it’s for sure a game, but you’re also doing literacy. 

JC:

And that the thing is, when we’re working on the activities, we’re not only thinking about language, we’re thinking about fine motor skills, gross motor skills, just everyday stuff that they’re doing. And one of the things our teacher of the deaf encouraged me was to let them make a peanut butter and jelly sandwich by themselves or even when you’re baking a cake do not try to help them [as] that’s how they learn. This is what one cup is. This is what half a cup is. Let them make the mistake. You have to be okay with the mess. And if you’re not okay with the mistake, make a peanut butter and jelly sandwich. But I did a post [on this]. It wasn’t visually crafted very well. Therefore I don’t think it was read very well but it’s like how to make a peanut butter and jelly sandwich in 20 steps leaving it up to your child. Alright, we’re gonna make a peanut butter and jelly sandwich. What do we do? What do we need? We need bread. All right, where’s the bread? It’s in the fridge. Okay, well, let’s go get it. What do we need to put on the bread? Peanut butter and jelly. And where is it? And They find it. All right, are we putting the bread on the floor? No of course, it goes on the counter. And do we need to put it on anything? And they say ‘oh we need a plate.’ We need a plate. Right and how are we going to get the peanut butter and jelly on the bread? Oh we need a knife. Obviously with one of those toddler knives like a safe one. But you let them do it. You let them take the peanut butter. Whoa that’s a lot of peanut butter [or] Oh, that’s not a lot. That’s just a little bit of peanut butter. Is that the way you like it? 

That’s all language and spoken sign, and they are also using their problem solving skills and fine motor and learning where things go and how they go. So it’s a great activity: make a peanut butter and jelly sandwich in 20 steps.

LS:

That’s great. I really loved that page; it was so inviting, so colorful. And you have all the links right there. So I’m going to send people to your page now. Whenever [people ask me] ‘like what games [or] what activities?’ I’m like I know just the page. I bookmarked it! 

And I think that we don’t want to get ahead of ourselves like you [don’t] need to buy 1,000 things. Like you said, it’s all the daily things of life. And I think the most important base level thing is shared attention [such] that you are doing something together and communicating about it at the same time. That’s the deal. 

JC:

That’s exactly it. There’s always this balance. I mean, you don’t have to spend every waking moment working with your kid, but your kids want to be with you. They want to play with you. They want to do something with you. And so those little activities – like I had one about where’d the hat go? Where is it? Where did we hide it? Where should we put it? – you just said it, you don’t have to buy fancy toys. Although some fancy toys are fun, but you don’t have to. Everything you need is around you to make up games and stories and crafts. [You can even use] empty toilet paper rolls.

LS:

*laughs* That is definitely a thing that is upcycled on the regular in our home. Like one time I think that one of them was ripped or wet and it was in the garbage can. And one of my daughters is like what is it doing in the garbage. Who put this in the trash?

JC:

You threw out my toilet paper roll! *laughs*

JC:

Yeah.

LS:

It happens. Oh, I have to also just give a shout out to the idea of upcycling for a second. So many of the things that we buy packaged, are exactly perfect for other things [such as] for storage, for toys, for sorting.

JC:

I’d love to tell you about one of them. I do not have a post about this, but this is great. You know those little pouch packages with the twisty tops. 

LS:

Oh Yeah.

JW:

Those twisty tops, you probably have multiple colors of them. If you save them, you can actually draw colors on a paper and make it like a coding thing so that they have to follow the color pattern with that code that you make or you can just make a pattern and then they have to keep extending it with all those colors. There’s a lot of stuff that can go into [by asking them] what are you doing, right? 

LS:

We have so much stuff going in and out of our house all the time. So turning on a new filter to like hmm, we could use this. Anyway, I think I could talk about ideas forever because once you go into the playing, and mom the life. [As well as for] parents, all caregivers who are constantly looking for ideas, so it’s good to be inspired by each other and share what seems so obvious to you. Someone else was like ooh, great idea. I haven’t thought of that. 

I want to hear if you have a point also for our professionals who are listening [such as] some advice for audiologists, speech therapists, teachers, and specifically about them in relationship with the parents of the children in their care. There’s sort of this triangle right? The parent and their child – everything is for them and for the child and their goal. But the rapport with the parent is also hugely important for the relationship. And sometimes it can be a little tricky as a professional to be with the child and working with them but also communicating with the parent about what to do at home. 

JC:

It’s a really tricky one and it’s hard to answer. The reason it’s hard to answer is because I am a parent. And as a parent, you’re playing the role of a parent and an advocate. I don’t want to say the problem. But the blurred line, maybe, is that as a parent, we love our children while we are advocating for them and we also advocate for what we want to see from children and what we hope our children can be. When we talk about children, it’s out of love, and the things we want for them. Whereas when we’re talking to a professional or non professional, maybe an activity coordinator, they are thinking about outcomes that they may need to reach or meet. It’s almost easier for a parent to have an advocate speak on their behalf because then they’re speaking about the outcome that they want for the child. Maybe [it’ll be] from the parents perspective, but that emotion is not going to get away. And as a parent, we tend to use  emotion, and that’s where things start to get mixed up because a professional might think they’re too close to it or they maybe don’t understand the professional side – where they have milestones and goals. And then there are just so many factors and nuances in that, that it really kind of depends what professional you’re working with. And it depends what kind of parent you’re talking to and depends on the outcomes anybody wants. And sometimes you’re on the same page and it’s great and sometimes you’re not and there’s a  battle. But one thing I would say from a parents point of view because that is my point of view is that it’s okay for professionals to have the milestone. I think sometimes there’s a patient that can maybe come in and [then the professional can] repeat back to the parents what they’re [the professional is] hearing. You can say ‘I acknowledge that these are the things you are saying that these are the things you want’ [and say this] before talking about milestones or goals or even facts because when we repeat back to people what we say, and this is more of a technique I use in my client work with mirroring, they feel heard most of the time. So the one thing I would just offer to let parents know is that they are heard by [the professional] repeating what they said even if you’re paraphrasing it, and so that they are saying yes, you heard that right. And then you can kind of go into what’s gonna be milestones or the goals. Because if they feel heard, they’ll listen a bit more to what maybe you’re trying to achieve and your perspective on the matter. With all that being said there are different programs, there are different people, there’s so much involved with so many nuances. But at the end of the day, I think that small detail of acknowledging what a parent says Jive will go along with whether you agree or not.

LS:

Yes, validation. It really is such a huge part of all of our communication. Thank you so much. What a beautiful thing to offer to our listeners. And there’s also a full transcript of all of our conversations at allaboutaudiology.com.

Janna, I’m so grateful that we had the chance to chat a little more in depth, [rather] than reading each other’s posts. We’ll have all the links in the show notes at hardofhearingmama.com  for you to check out all of the resources and that beautiful list of games to play. 

And thank you very much for all of the listeners of the show and being part of the all about audiology community. You are so appreciated. I’m always here for you and happy to hear how anything we talked about lands for you, [or] any questions you have, [or] any offers or suggestions. And if you know anyone who will be perfect to be a guest on our show, you can nominate them. You can send me a DM on Instagram or through Facebook or through my website and a huge huge thank you to the patrons of the show. And if you’d like to become a patron that’s at https://www.patreon.com/join/allaboutaudiology, thank you very much. This is the all about audiology podcast. And I’m Dr. Lilach Saperstein.

The post All About Raising HOH children as a HOH Parent- Episode 88 appeared first on All About Audiology.