Speaker 1:
Please welcome Dr. Michael Hoffman. The title of the presentation today is Supporting Early Deaf Identity Development. Dr. Michael Hoffman is a pediatric psychologist at Children's Hospital of Philadelphia within the Center for Childhood Communication and an assistant professor of psychiatry in the Perlman School of Medicine at the University of Pennsylvania. He provides integrated psychological services with an emphasis on patient-centered care, collaborative care for deaf and hard-of-hearing children in the families. Dr. Hoffman serves on the cochlear implant team and provides outpatient consultation for cochlear implant candidates and those who recently were implanted. He also helped to develop a tiered model of service to screen all deaf or hard-of-hearing patients and provide great interventions for challenges related to deafness, deaf identity, adjustment to hearing loss, limited device usage, minimal stress related to hearing loss, academic and peer difficulties, and traditional psychiatric diagnosis such as anxiety, depression, and ADHD. Dr. Hoffman is deaf himself and utilizes one cochlear implant and one hearing aid. Please join me in a warm welcome to Dr. Michael Hoffman.

Dr. Michael Hoffman:
Good morning, everyone. How's everybody doing today? You maybe need a little bit more coffee. First, I want to say thank you so much to the EHDI planning committee and everyone involved for giving me the opportunity to be here and present. I'm really excited. It's been an awesome conference so far, meeting people and seeing such diversity of opinions and perspectives, and I think that's really powerful and probably something we need a little bit more of in this country, not less. And so hopefully over next hour or so I can give you some more input and ways can think about how we keep supporting the families and the patients we serve.
I have no financial disclosure to report, some objectives, a little bit about road marking before we get going. We're going to talk about some of the research in the early deaf identity for young children and how to support that. We're going to get into discussing specific strategies that can be used in supporting the families and the children that you work with, and then we review a broader framework of multicultural identity and intersectionality, and thinking about how that can be used and conceptualize the best way to support the family center we work with. When I get the opportunity to do presentations like these, I sometimes see some wonderful, wonderful talks at conferences. They're fascinating and then I walk out and I'm very much unsure of how to take that and apply it to my day-to-day life. That is great. So interesting. I have no idea how to use that. And so what I'm hoping over the course of the next hour, is to give some specific techniques, skills, concrete strategies that you can walk out of here and try with your patients or with your kids at home for our parents that are here.
I'm also going to introduce myself a little bit more, explain a little bit more about my background. We'll go into the research. I'll give you a framework for cultural identity and intersectionality, starting a little bit more broadly and then we'll tailor that down a little bit more specifically to deaf identity in particular, and then going into some specific concrete recommendation strategies.
So I myself as [inaudible 00:03:38] introduction, I have hearing loss. I was born with bilateral and severe to profound hearing loss via connexin 26. And so for me, I was diagnosed at five months of age, which for most of the folks in the room here, you probably know that Universal Newborn Hearing Screening did not exist back in the '80s when I was born, and so I was caught pretty early at that time and started wearing hearing aids pretty shortly thereafter. And I was a patient at Children's Hospital in Philadelphia for the first 18 years of my life before I transitioned to college.
So I wore my bilateral hearing aids pretty much my entire life until age 28, and actually, when I was in graduate school, one of my colleagues who's an audiologist had said, "Hey, Mike. Did you ever consider if you were a candidate for an implant?" And I said, "No, not really. No one's ever suggested to me." And I knew that my right ear was a little bit worse than my left ear, and usually I did most of the work on my left side. So if my battery died on my left side, I would take it from my right and move it over. I could talk on the phone on my left ear, but not on my right ear. And she said, "Mike, go just walk around for a day or two without your left hearing aid, because it doesn't sound like you ever really spent time without." I did that and I was like, "Wow. This is much harder than I actually thought it'd be."
And then did the testing and became a candidate. Clearly I was a candidate in my right ear, and decided after a year of thinking about it and stressed about it, having lot of conversations with my wife about it being the decision to go ahead and get the surgery. So it was implanted the 28th at the University of Miami. So I say all of that to tell a little bit about my own experiences because I've had the opportunity as a patient to receive care in lots of different settings, whether that's a large pediatric hospital, a university training clinic when I was in college, small private practices as I was living in the community, going through OVR, getting lots of resources in that way. And all of that certainly informs and shapes how I think about my perspectives and the patients that I serve now. And because this is a conference where we're mostly talking about kids. [inaudible 00:05:47] I had to conclude a little picture of me back then. Much to the chagrin of my mom, my cheeks are smaller now.
So professionally, I attended the University of Miami and got my Ph.D. in pediatric psychology. Shout out to the few pediatric psychologists here in the room. There's not many of us. We're small, but we're a mighty crew. So if you're not familiar with pediatric psychology, what that means is we are a child clinical psychologists, but we specialize specifically in kids who have some sort of medical complexity or medical background. And so as I moved through training, I had the opportunity to work in a lot of different clinics, diabetes, primary care, cardiac, inpatient. We're working with lots and lots of different medical populations, but the one that was always nearest and nearest to my heart was the opportunity to work with kids who were deaf or hard of hearing. In the pedi psych world, there hasn't been a whole lot of integration. There hasn't been a ton of psychologists that have said, "Hey, this is a population that would really benefit from [inaudible 00:06:51]," and so there's a huge area of opportunity for growth there.
In Miami, and then I went over to the Board of Children's Health. My location was in Delaware on internship, and I'm eternally grateful to my training director at the time. She came up to me and she said, "Mike, I know you really want to do deafness work, but I know nothing about deafness. I know the hospital, you know deafness, you know nothing about the hospital. Let's go try to make this work," and also, [inaudible 00:07:19] who were very welcoming and supportive and let me come in and started building out integrating psychology services into the clinic, I stayed there for six years as an intern and then a fellow, went four years as faculty before I had the opportunity to transition to CHOP about a year and a half ago. For me, that was really meaningful because as I mentioned before, that's where I was as a kid. And so to have this opportunity to go back to the hospital where I got care feels very, very full circle in a way, and it's very special to be able to do that.
So continuing on, to share a little bit more about myself, and the reason I'm giving you so much background about me is because it's important to acknowledge our own perspectives, our experiences, and our own biases that we might bring to the table when we're working at supporting families. If folks have ever seen something like this, this is called a multicultural identity wheel, and so in it, we've obviously got my name in the middle and then some of the different identities that I hold around it.
So some of my more visible, obvious identities such as a white male and some of the other identities such as being a father of two. I was raised in South Jersey, the suburbs of Philadelphia in a middle-upper class neighborhood. Obviously I've spent way too much time in school as a psychologist getting educated. I'm a big Philadelphia sports fan. Sorry, I'm not sorry. It's going to come up again. And yeah, I have a hearing aid, an implant, I'm cisgendered and so I also acknowledge and recognize that even though I do have experience as a deaf individual, I also have a lot of privilege and identities as of right now.
A few framework facts before we keep going. I'm not going harp about this too much because I'm sure most of you know all of these things, but they're important to just remind. So about two, 300,000 children have some form of hearing loss. What I think is the most important point up here is that 95% of children with hearing differences are born to typically hearing parents, which is going to be pretty important when we come back to talking about identity because that is an identity that those parents, those caregivers, often don't know much about, if anything, and they're never getting that. So I'm sure you've all seen that and experienced that in the conversations that you've had.
Roughly 70% of kids [inaudible 00:09:41] Universal Newborn Hearing Screening these days. About 50, 60% of children with hearing loss have some unknown or some underlying non-genetic ideology, and about 20% have syndromes. 60-ish percent of individuals, that's children and adults, in the US use assistive devices, and then about half a million people in the US [inaudible 00:10:02]. All of this is to say there's a ton of diversity, there's a lot of different experiences, and I think it's really cool, because what it means to each person to be deaf and what their experiences are are unique to them.
This slide is a little bit busy, but I always like to throw this in my presentation because this is just a very cool visual recommendation of the different forms of languages that exist, and I think sometimes it's easy to default to ASL as one category and spoken language as another, but there's an entire spectrum, [inaudible 00:10:37] in the middle of lots and lots of different forms of languages that are important to keep in mind. A few more table-setting facts. So deafness is not a monolith.
There's a ton of diversity, as I've mentioned, with experiences and that's important. Audiological level or what we might see on an audiogram does not necessarily equal someone's deaf identity or the lived experiences. You could take five children and five adults who have absolutely identical audiograms, maybe the same PTA, and go sit down and have a conversation with each of them and say, "Hey, what's it like for you when you go to school, when you go to work, when you're with your friends, when you're with your family?" And you are going to get wildly different answers. And so recognizing yes, the information you get in your healthcare setting is important, but it's not all of the data that we need. Last but not least, I'm using the term deaf or hard of hearing today. I'm using that more as umbrella term. I'm using that to encapsulate all of the children and families that we see, and just be mindful and respectful of that because there are a lot of different ways in which people identify in terms that they prefer.
So what does the research tell us? What do you know? Obviously, again, as I'm sure many of you have experienced, for the caregivers who have a child who's recently identified or newly identified with hearing loss, it's a big adjustment. A lot of families will say that there's a sense of grief, there's this uncertainty, there's this guilt, there's this stress that they feel about learning that their child has hearing loss, and some of the qualitative studies have shown that they will use terms like shock and guilt, and grief and denial. It's hard for them, and they're going through their process of shifting whatever idea they had in their head of, "I'm going to have a child. This is what I hope and dream and expect for my child, and now there's some kink or a curve in the road that I wasn't necessarily anticipating. I don't know what that means."
And so most caregivers of deaf children will rate and describe higher levels of stress and higher levels of anxiety than typically hearing children. That is important because we've all seen how a parent's stress and acceptance and processing can impact their early transition into early intervention, into following up with hearing devices, into meeting the 136 guidelines, and so not surprisingly, higher parenting stress is associated with also all those things, but higher-rated behavior problems. We often talk about language. That's understandably and obviously the number one outcome that most of us think about when we're speaking on deaf children and looking at their overall development, but there's a whole other picture out there and other ways in which children are developing, and so a parent can talk about behavior challenges and other challenges that come on. Also, if you are a family that is experiencing increased stress because of a new diagnosis of hearing loss and other complexities if your child is deaf plus, the very next place that all that strain follows is into the marital relationship or the parenting relationship. So that is something that's important.
We've seen examples many, many times where our parents are not necessarily on the same page. Sometimes they're completely different books, and it's hard for them to come to a consensus and find a middle ground from which to move forward. When I was preparing for this presentation, I think one of the most interesting studies out there was talking about parental anxiety and how that significantly predicts attendance of early intervention. So if you're experiencing more parental anxiety, you are probably less likely to follow up with early intervention services. And the most fascinating part of this to me was this about 20% gap between parents and families who are following up with their required medical appointments versus those who are following up with early intervention.
So you're navigating this whole period of having a young child. You may still be recovering from birth, you may be dealing with other children at home, other lifestyle circumstances, you go, "Okay, I'm going to go to the audiologist, I'm going to do the hearing screening, I'm going to maybe devices if that's something that we are pursuing," but all of this other stuff maybe feels a little bit more optional, and so then we see that drop off that happens. And for many of us in this room, I'm sure we would love to close that gap and have those numbers be ideally equal and certainly close to 100%.
In kids themselves, research has shown that the mean age of awareness is approximately age three, and so what I mean by that is around age three, children start to look at certain traits and states as being more stable and consistent. In my house with my almost three-year-old, she's a very big fan recently of going, "You're a boy, I'm a girl," and if I say, "No, no, no, I'm a girl," she's like, "No, no, no, you're a boy," and so that is starting to be more consistent for her. Around age four, that's when children are able to start perceiving some differences between themselves and others. So they may notice that they've got a hearing aid, or they may notice that they've got cochlear implants.
It's not going to be super nuanced and in-depth, but they're able to perceive differences that are happening as they go to preschool or go out to play groups, gymnastics, dance class, whatever it may be. Which also then says that the impact of those psychosocial experiences, the impact of that early identity is happening at a young, your age before maybe families might think about having those conversations or those dialogues with their kids.
So having set the table, and then right now, we're going to shift and talk a little bit more about cultural identity. Cultural identity more broadly defined is someone's self-conceptualization as an individual and within broader cultural groups. You're going to hear me say this about 20 times over the course of the presentation, but identity is fluid. It is constantly shifting and evolving and changing based on social, cultural and historical experiences. What an identity means, how we experience our identities are constantly changing over time. You can break it down into three parts, cultural knowledge, category label, and social connections. I always like to explain this a little bit more using an example, I think that makes it a little bit more digestible. And so if you're remember back to my identity wheel, I said I was a Philadelphia sports fan. The Eagles winning the Superbowl has not made me any less obnoxious about that.
And so when we talk about cultural knowledge, that's my connection or my understanding to core characteristics. So as a fan of the team, I know the history, I know a little bit about who they played, I know some of the players and when I go have a conversation with someone else who's an Eagle's fan, there's a little bit of a shared basis that we're drawing from. We've got that shared understanding of who the team is, who the players are, and how the NFL works, et cetera.
Then there's that category label, which may not be me having a direct conversation with somebody, but I've said this to my wife a million times, no matter where in the world we are, if we're traveling back to Philadelphia, if we're getting ready to get an airplane, there's at least one person wearing an Eagles jersey today, and I can see them and be like, "Yep. Go birds." We know what it means. And last but not least, there are those social connections. If I go to sit with a friend, I watch a game, if I get together with my family, if I'm teaching my children about what it means to watch the Eagles, that is how I'm expressing that identity in all those different ways.
Obviously there are tons and tons of different cultural groups and different identities that someone can have in their nationality, their ethnicity, their religion, their social class, and more. Importantly, when we talk about identity in correlation with deaf children, we have to also consider how cultural identity is transferred. What does that transition look like? There's two broad categories that you can break down. The first would be observational learning. Some sort of transmission just from watching and seeing. The second would be some active guided participation involvement in a group. And so vertical transmission would be some sort of identity that is passed on usually from caregivers to parents to offspring. The example that always comes to mind for me is usually religion, and so if I want to teach a child about what it means to be Jewish, Muslim, Catholic, or any other religious identity, I'm bringing them to my place of service, my place of worship, or practicing tradition or practicing holidays, teaching them lingo and passing that culture down to them as a parent.
The second one is horizontal transmission, which would be from peers. So not from your parent, but from the people in your cohort, your generation. The example I always think of when we're talking about horizontal transmission is social media. If our children access social media, they go on, what they see and the way they engage with social media is very different for their culture than it is for ours. The lingo, the language that kids use today, all the sign terms that they have, that's horizontal cultural transmission and [inaudible 00:20:02]. And then last but not least would be oblique transmission happening from older generations or institutions, but not necessarily that immediate family.
So if we flash back, we said 90, 95% of children who are deaf are born to typically hearing parents, which means this vertical transmission is not really happening. Those parents do not have that identity of the deaf parents. Obviously there's a caveat if you have parents who are deaf themselves who raised that children and that is amazing, but by the numbers, that's more of the exception than the rule. And so most of the transmission of the deaf identity is happening via horizontal transmission or oblique transmission. And as caregivers, they have to make that decision to go seek out more of that culture, more of that identity that they don't have and say, "I'm going to bring this to my child."
Next piece would be considering intersectionality. I hope most people at this point in 2025 have heard this term and have started to understand it a little bit more, but if not, this term was coined by a Black woman named Dr. Kimberlé Crenshaw in 1989, and it is the interconnected nature of social categories such as race, class and gender and regarded as creating an overlapping and an independent system of discrimination and disadvantage. So intersectionality involves negotiating your own diversity and figuring out how to express that with clarity and confidence in different settings, and certainly it changes across the environments that you're in.
And as many people talk about, they code-switch in different environments. Who I am right now is Dr. Hoffman up on the stage. It's a very, very different version of myself than I was last night when I went out with some friends. That's okay. Both those are true, both those are part who I am, but I am code-switching a little bit, I'm being professional as I'm up here, as much as I can be. I really love this image because it shows the overlap of all those identities. They're not unique little bubbles that's easy when you're trying to write it out and put down a piece of paper to think about it, but in actuality, most of the identities we have overlap and intersect in lots of different ways. The one that I like even more would be this one.
So this is what they call the wheel of power or privilege, and just to orient you a little bit, if you're looking at it, you can see different identities on the outside. So whether it's education, skin color, citizenship, status, gender, language, and then if you have the identities that are on the outside of this circle, that are further out, those are ones that are often more marginalized. And then if you have the identities as closer to the middle, those are more approximal to power. And so if I look at myself on this wheel, I have to acknowledge that white, I have a lot of education, yes, I've got hearing loss, and I'm able-bodied otherwise. I am heterosexual and neurotypical. I have what I would consider fairly robust mental health. I am a person who is able to exercise and move. I am a person who's been able to buy a house. I am middle-upper class, I speak English. I'm cisgender.
So I hold every identity that is more approximal to power than most might, and so I have to also recognize when it comes to my experience engaging in the healthcare system, I have a very privileged view of what it needs to be deaf and when I need to go to the hospital. My parents, they could take me to the hospital. If my [inaudible 00:23:34] broke, if my batteries were dead, we could run to CVS. It wasn't a worry of how we were going to get there or who was going to pay for it. That's not always the case for a lot of our families, and so we have to keep in mind that broader intersectionality as well and wide disparities.
This example I really like to share, I had a family who was coming to our clinic. They had two children who were in deaf, both of whom were implanted. The family was from Eastern Europe, and this is the first time I was meeting them. Mom comes in with one of the kids and they've got the great aunt and the grandmother with them, they were speaking another language. And if you sit in my office, you will see that I've got pictures of my kids and a couple friends and some of my family on my wall, and I see the grandmother and the great aunt conversing, and they're having their conversation and they reach over and they tap the mom, and she says to the mom, she goes like, "Tell him good job." She's pointing to a picture of my daughters and she's like, "You have a family. That is awesome."
And in that moment I'm a little offended. I'm like, "Yeah, of course I can get married and have a partner and have kids. What the hell are you talking about?" But in the same breath, I'm kind of taking a beat and realizing that for these two women coming from Eastern Europe, that idea of what it needs to be deaf is very different from them. The folks that they have seen who had hearing loss in their country probably had little to no access to services or accommodations. They probably didn't have a great language system, they probably didn't have great access to jobs. And so I represent an entirely different way of what it could mean to be deaf. So well on the inside, I was a little bit like, "What the hell, ladies?" On the outside, I understood where they were coming from.
I have another patient who I've been working with now who is a young Black male, and he was a cochlear implant candidate. He had been a candidate for about two, three years. He was struggling in school. He did not have access to ASL, he was a primary spoken language communication, but there's a lot of social things going on outside of the home and inside the house that was making things hard for this family. He had a brother who was a twin who had previously been involved in an assault. He had a TBI. His brother was also arrested and falsely accused of murder and put in jail for three or four months before he was released. My patient coming in very, very clearly has signs of PTSD and depression and anxiety. So we as a team are trying to consider how we get him to move through this process. We have to be mindful of the other identities that he has and what his experience was in the day to day when he leaves the hospital doors.
So to bring it back together, we have to consider all of these different identities, and so I think this is a really, really great exercise. When you're thinking about people that you are going to go work with, what do they look like? What are the different ways that can come from? And again, just a reminder that one size does not fit all. What people's experiences are, what their identities are, both as deaf individuals, as parents of deaf children, can be radically different. So let's shift a little bit more into deaf identities because that's really what you're here for. That's what you want to hear me talk about.
So when a parent or a caregiver learns about what it means to have a kid who's deaf, that term of deafness is totally new for most of them, and they're trying to define what it means to be the parent of a deaf child. We never have to sit there and think, "What does it mean to be the parent of a hearing child?" I have two girls that are typically hearing, I've never had to wonder about that. So caregivers, they're doing a lot. They have to make decisions in this time about language, about education, about charitable care, about healthcare, medical intervention, all while learning how to be a parent in general. If any of you in this room have kid yourself, you know how exhausting and tiring it is just to parent the child, let alone consider all these other decisions.
And so they're juggling tons of things, what it means to be the parent of a deaf child, what it means to have a deaf child from a developmental perspective, what it means to have a deaf child from a cultural perspective, which they probably don't have, how to advocate on behalf of their child and support them in navigating these systems. And so it's trust. I find a lot of times when I'm talking to parents, we are having conversations about, quote, unquote, "Success." How do we define success? What does success mean? And oftentimes there's a shift, this conversation of talking about success through the lens of developmental milestones, language scores, how are they doing on this stuff? How are they doing on all of the ages and stages or the other questionnaires that a pediatrician might give you, and are they progressing it that way? And I wonder sometimes if that isn't rooted in nihilism and ableism, because when you think about building a culture identity, it usually has nothing to do with what your standard score on a test is.
But I also understand that that's how parents are. They want their kids to hit all those developmental milestones as best as they can. So I hope both of those things is true. Yes, they want their kids to be as close to typically developing as they can be, but also there's this other part of that identity that might be getting missed. And so research has shown that as families meet teachers of the deaf, adult deaf mentors, the people in the community when they're young, they tend to shift a little bit away from that as their child ages and they get into school. That's kind of the most important part if we're talking about a positive identity. So when we think about forming an identity for young children, we have to consider how do they learn about what it means to be deaf. Who's doing the transmission? Where is that transmission coming from? And again, unless that family has some previous experience with deafness, it's probably not coming from them and that transmission is happening more horizontally or obliquely.
There's a couple of studies that I wanted to reference real quickly. This was a great one that had some quotes about teenagers and their experiences. So in the paper they say identity of deafness is not a static concept, but a complex ongoing quest for belonging, a quest that is bound up with the acceptance of being deaf while finding one's voice in a hearing-dominant society, or as one of the teens said in a much, much less sophisticated, more succinct way, "I'm just trying to figure out how to be deaf in my own way."
This was another interview that came out in 2023, which is great because research tends to be a little bit slow sometimes in coming out, and it talked about the idea that deaf identity is increasingly complex. It's fluid and is subject to significant change over time. So there's constantly this negotiation and renegotiation about the identity that you hold and what it means to be deaf that bounces back and forth between signing and speaking worlds that evolve. In this paper, they coined this term, which I will say I've never had anyone use this in clinical context, but I still love it, so I'm going to put this in. They talk about D-e-a-F, and the F, the reason it's capital is because they're referring to fluid, thinking about deaf identity as fluid and shifting. And in particular, they were referring to those who use hearing technologies but might go to a mainstream school.
I was even thinking about some of the patients I see who when I was working in Delaware, worked at the Delaware School for the Deaf, they were in an environment where they were signing all the time with their peers. Their experience of what it means to be deaf in school is one thing, and then they leave school and they go home on the weekends, they go with their family and they go with their neighborhood friends and they're now in the hearing world and most people are voicing, maybe some family members know ASL. Their experience of what it means to be deaf on Saturday and Sunday, very different than Monday through Friday. Both of them are real, both of them are true. They're shifting, they're flipping hats. And so they're constantly constructing and reconstructing that identity.
The other piece that we can't ignore because the answer to everything involves some degree of technology is how much technology and data has changed things for us over time. So what it means to be, say, an individual who's profoundly deaf is inextricably tied to what is available from the medical system. What it means to be a deaf person with a cochlear implant is really different from people who were in three, four generations prior to me who might not to [inaudible 00:31:53] schools for the deaf. If I had been born 30, 40 years earlier, maybe even 10 years earlier, maybe even five years earlier, I could have had a very, very different experience. I would've had a very different experience. And so now that the people who are profoundly deaf are more and more of those kids are getting implants and technology, what that means is they lean more towards a hearing [inaudible 00:32:11]. They lean more towards being in mainstream schools and mainstream environments and not until later that they start to ask some of those questions about identity.
There was a great documentary that was called Deafness in Three Movements, Moonlight Sonata. I don't know if anyone has seen it. It might make you cry if you watch it, but beautifully, beautifully done. It had two grandparents who were both profoundly deaf. They communicated via sign and they didn't voice at all, and then they had to hearing daughter and her daughter ended up having a deaf grandchild. He got bilaterally implanted, and you can see this tension between this grandchild who had bilateral implants who communicated via spoken language, and his grandparents who mostly communicated via ASL. And just even within the same family system, their lived experiences were so different that it was hard for the grandparents to have a relationship with their grandchild who were the same core identity that was tying them. And so I also want to say that identifying with deaf culture is certainly and in no way an opposition to identifying with some sort of hearing culture, and there are a lot of strengths in either ways.
This next part could be a topic all in and of itself, but there are a lot of ethics and questions that we have to think about as providers. Namely, what is the perspective or the bias that we bring when we're serving families? Am I thinking about deafness from a medical lens or as disability? Am I thinking of it as a culture and identity? Somewhere in the middle? We all have our opinions. That's why you care about this stuff, it matters to you, but you have to be mindful of how do you bring that into the room. See my [inaudible 00:33:47], talk about that more. The other way that I like to think about, it's kind of like the parable of the blind prophets, the blind philosophers and the elephant, right? Deafness is really, really different depending on where you're standing and how you look at it. And not to say that anyone is right or wrong, but everyone has their own interaction and their own experiences with it.
So what can we do? How do we actually help and support some of these families? I wanted to start more with some guiding principles. This is something that I come back to time and time again in the families that I see. Number one would be if your child is old enough to ask the question, they're old enough to get the answer. And what I mean is when a kid comes to you and they say, "Why do I hearing aids and someone else doesn't?" Or, "Why this and not that?" They're already thinking about it. They're already kicking that question around in their head and trying to come to some sort of resolution, and I got the opportunity to jump in there and have a conversation with that child, then I can shape and form that understanding and that concept in the way that I want to, "This is why you have hearing aids, this is why your brother or your sister doesn't. This is why we're considering getting an implant. This is why we're not."
You can have those conversations. If you do not, then kids are going to get answers in some way. They might get it from somebody else, they might get it online these days or they might just come up with some weird explanation that makes absolutely no sense. And it's also many conversations. It is not one. So if you're talking to a child about what it means to be deaf, you're not just doing it one time and like, "Cool. Okay, thanks. What do you want for dinner?" No, no, no. This is an ongoing discussion. With my daughter who's five years old, I've been just using the language, "Yeah, daddy's got a cochlear implant. You talk to daddy when he just woke up, daddy did not hear a word you say." And so I'm helping her understand, right? She now is interested enough to go want to change my batteries, and get my implant battery out the charger, which gives me a little mild anxiety attack because I'm worried she's going to break it, but I'm trying to let her get involved and understand what that means.
Be honest with your kids. So many times as parents can really want to protect our kids, it is a big, scary dark world out there, and I understand that, but kids have really, really good [inaudible 00:36:08]. So when you don't tell them the truth, they might not know exactly what it is that we're not telling them the truth on, but they have an inkling that's something not straightforward, and I've had families of, say, eight, nine-year-old kids who have progressive hearing loss who now have just underwent a significant trial, and they're becoming cochlear implant candidates and those families have never talked about the possibility of that kids hearing changing with them. So this nine or 10-year-old is struggling because all of a sudden their world is rocked with trying to figure out what's going to happen to them, are we going to do an implant or not?
And be developmentally appropriate. My daughter, who's five, does not need to know the number of electrodes that exist within my brain or what [inaudible 00:36:58] is, but she can understand what it means to have a cochlear implant. In short, succinct is usually a pretty good way to go. Consider all those things we were talking about, bias and perspective, also what caregivers want versus what the child needs. So when we're having conversations with families, is the main driver of their sort of decision-making coming from the caregivers themselves or they're coming from the children? So some parents, when we talk about, say, again, we pick the cochlear implant example, they think implants and hearing aids as completely different categories and others think of it as just one thing. And so yeah, who's driving the conversation? Where is that kind of [inaudible 00:37:38] intention coming from, and how do we balance those?
Also, for ourselves. Like I said, all of us care deeply about the families that we serve. Y'all care deeply about the deaf population, that's why you traveled here for this conference. But can you check yourself at the door? Because when I meet with a family, I always say, "Look, I am certainly a person who has hearing loss myself. I have my own ideas, I have my own biases. I have my own perspectives. My job as Dr. Hoffman today is to give you as best as I can, the most information to help you as a family get to the decision that feels best for you, and how can I support you with that?" Easier said than done. We as psychologists spend way too much time self-reflecting and thinking about what we bring into the room, but it's really, really important.
And certainly as a deaf [inaudible 00:38:25] myself, I get asked questions all the time, they're like, "Dr. Hoffman, what would you do?" "I can't tell you that. I can't tell you what I think you should do. I can only help you make your own choice." Just to bring back the [inaudible 00:38:42] from yesterday, you got to check yourself before you wreck yourself. Keep that in mind and consider when we're talking to families.
Colors. So we've been talking out a lot about the explicit message, the way that we say things and how we communicate, just as important if not more important as the implicit messages that we send to our children. So colors, colors, colors. So many times I hear family say things to me like, "Oh, man. Dr. Huffman. We're trying to figure out what color to get, and I don't want my child's hearing aids or implant to be the first thing that someone else sees. I don't want them to be judged for being deaf," and I go, "Okay. Yeah, that's fair. I understand where you're coming from," and sometimes teens will say that, "I don't want other people to see that." But for the little ones, if we let them embrace it and have fun with it and think it is cool... You get a new iPhone, you want to swag it out, you're going to get a cool case and put some fun stuff on it, right?
The Debbie School in Miami, one of the first places I did a rotation at, we had a young man who had something very similar to the Hulk here, and every time I would walk in there, he'd be telling me, "I got the Hulk, I got Spider-Man, I got Iron Man today." He loved it, but that was his way of embracing and showing off his devices that his mom would get hin there. I had another patient who was known around for school for having about 80 different pairs of earrings that she would hang from her tubing. She had, I believe, a whole box of different choices. Now, you don't have to go out and buy your children 80 pairs of earrings, but the idea was [inaudible 00:40:19] be like, "Yeah, this is part of you. We're going to embrace it. We're going to make it cool."
And don't underestimate the power of brands. You slap a Paw Patrol on anything, and it's cool. We need Chase and Ryder and Rubble hearing aids now. We'll make it fun. For me, when I grew up, I always had usual color hearing aids until I was about nine or 10, I think is when my parents asked me what I wanted, and at the time, I believe it was Phonak operating the clear casing around the hearing aids so you could see the internal components. I thought that was the coolest thing in the world, and that's what I got. And I love to have those hearing aids. I still have them in my house. So having that conversation about why do you want these colors? A simple hack I use with parents sometimes, I'll be like, "By the way, just so you know, if you get beige brown and your two-year-old throws its hearing aids in the grass, good luck to you. But if they're hot pink, it's going to be a lot easier."
Representation matters a lot, and so one of the really cool things about the era that we exist now is you can talk about social media and online and all the harms that's happened, but there's a lot more access to different communities and groups. Shout out to all the moms and the parents at Etsy who make really cool things and will sell them in their shops. There's Joss, the American Girl Doll. Have people heard of her? Yeah, she's pretty cool. So she's out there. Now you can go and get a Joss doll with her hearing aid. Lego put out a set of this young guy at the hamburger truck, a burger stand. And so what's cool about that one is Lego didn't even advertise it as a cochlear implant. They're just like, "Yeah, burger stand with customer," and he happens to have this CI. They fold that in.
Yesterday I was at one of the booths where I believe are a group from UPMC, and they had just put a beautiful document together of all of the different books out there, and they categorized based on language preference, based on age, [inaudible 00:42:29] and so on. There are tons of books and resources out there that we can bring. This picture here of Derrick Coleman, the Seattle Seahawks football player in the top corner. I don't ever remember growing up and being like, "That's a deaf person. That one's a really, really cool example."
I was very much a [inaudible 00:42:46] normal boy who loves sports and loved watching all that, and I remember right around the time in the early 2000s, the Seahawks had won the Super Bowl. Their full-back at the time had hearing aids, and Duracell put out a battery commercial feature for him. It was the first time I was like, "Wow. This is really freaking awesome. There's a commercial with Derrick Coleman." I probably watched it 10 times in a row just to see that. Tons of books on [inaudible 00:43:17] that Apple had put out the cartoon version on. If you go on Apple TV. So there's lots and lots of representation out.
When I was in Delaware, I had the opportunity to do a grant with a couple of my colleagues who were here to work with the Delaware School for the Deaf, and we were given some basic resources and supports to all of our families and using the early intervention providers to take those into the homes because that's where you go. Some of them were diapers and wipes, some very basic supplies for families if they need it, battery checkers, tube blowers, things like that, some ASL books. But the number one thing that we sent out there that we got tons and tons of feedback on were these babies that were created, and the woman who did the examination, she did a bunch of different diverse babies, some with hearing aids, some were BAHAs, some with implants, and we tried to match them as best as we could with a different kid [inaudible 00:44:12].
We got so much feedback about how the kids loved having a doll or a toy that actually had hearing loss. I know all the companies on the manufacturers had the koala and the panda and such, but there's also plenty of other ones out there too. I brought one of these home for my daughter and she loved it, and then promptly decapitated it. It's the thought that counts.
Community managers, that's important. So this is from the Deaf Starbucks in D.C., [inaudible 00:44:44], which is awesome. There's obviously some communities that have a really, really robust opportunity to engage and to be out there and see all the deaf individuals. And I know for folks who live in more rural areas or away from big cities, that's much harder. But there's a lot of really, really incredible groups out there that are doing important work to unite people, and the internet technology makes that possible. Hands & Voices, the American Society for Deaf Children, all the camps, all the organizations out there. Even me as a deaf-specific provider, families go, "Oh, you're a deaf adult. I want to hear from you." I can't speak to what it's like to be a parent of a deaf child. I can't speak to what it's like to be a deaf child now today. Certainly, social media, you can go out there and social media hashtags, but it's a little dicey, you don't know what you're going to get.
I think about in my experiences, I grew up [inaudible 00:45:39] oral, typically hearing school. I was the only deaf child out there in my environment, and so when I was about seven or eight, my mom came to me and she said, "Mike, do you want to learn ASL?" And I was like, "No, I want to play basketball." It just wasn't something that my parents had really folded it in or talked to me about when I was younger. So when they brought it to me as I got a little bit older, I was like, "I don't know. That sounds weird. I don't want to meet other people," because it wasn't part of my experience. And so I was the only one who had that. The deaf camps seemed really awesome. I've never had the opportunity to attend one as a kid, but it seems like a really moving and valuable experience for the children.
The implicit language cues. Don't apologize for your child's hearing differences or for their hearing loss. If you hear them saying, "I'm sorry, I missed that," or, "I didn't catch that. My bad" I know sometimes it's just a quick turn of phrase, I'm guilty of doing that a fair bit, but you have the opportunity to really stand on your two feet and model for your child like, "You deserve access and you deserve accommodation. And no, I'm not going to say sorry because I requested preferential seating or an interpreter, or whatever it might be." You're a modeling that for your kid. You're different. It's okay.
I think it's a really, really crucial point. So many times when I'm talking to parents, we're talking about that early grief, mainly what's sort of underpinning that is this sense of I don't want my child to feel different or be different than anyone else. I get that. I understand. Nobody wants their kid to be different, but they are. It's not a bad thing. It doesn't mean anything is wrong with them, but they are different. And when we as caregivers or parents go and say to our child, "There's absolutely nothing different about you, Mike. You're just the same as everyone else." Cool, peace. And then I go to school and I sit at my desk, I don't see anybody else in here with hearing aids. What the hell are they talking about?
And what it ultimately does is closes the door on communication. If I tell my kid that there's nothing different about them for being deaf, it means that we're not going to talk about it. It's not a conversation we need to have. It's not a thing, versus saying like, "Hey, Mike. Does anyone ever ask you about your hearing aids? What do you say? How does that makes you feel when they ask you about that? Do you want to practice what we might be able to tell them? What's it like when you go get your FM system to someone?"
I don't recommend this, but this was what I did as a middle schooler because I didn't want to talk to my parents about it. I had the FM system. I despised my FM system because I didn't like having to single myself out and go up to my teacher in front of the class, especially when they had substitutes and I had to spend two minutes explaining it to them. And so when I was going into middle school, it broke, and so I spent three years, the entirety of middle school, giving a broken FM system to all of my teachers because I didn't really want to use it, and they didn't know how to check it. It was a conversation I had.
I do not tell my patients that story, but... By the time I got to high school, we're having our IEP meeting with my mom, I say, "Mom, I really don't want to use the FM system anymore," and she goes, "Well, how do you know you don't need it?" I was like, "Well, I just think I'll do all right." And she goes, "All right. I'll make you a deal. You can try and not use your FM system, but if your grades slip, then you're going to have to use it." I said, "Fine." And then of course I told her the truth after that, and she just kind of looked at me like, "What the hell?" There was nothing she could do about it.
I also remember my mom in other ways when I was going into kindergarten, it was my first day at elementary school when she brings me next to my teacher and she says, "Listen, Mike's got hearing loss and wears hearing aids. If he tells you that he cannot do something because he's got hearing loss, he's full of crap," and then she turns and looks at little five-year-old me and she's like, "You heard what I just told her." I was like... She knew what I was getting ready to do. I was going to use it to my advantage, but she called me out. So teaching our kids like, "You're different, and that's okay. Yes, you do have hearing loss, or you maybe use ASL or maybe a person who has a cochlear implant, all right, let's have conversation about it." Even now when we talk about the term of disability, for some kids, they think of that as a dirty word, some kids embrace that. Everyone defines these terms differently, and having those conversations is important.
An incredible resource that I found, and I wanted to give them credit here because these were not all my ideas, but the National Deaf Children's Society, which I believe is based in Australia, have put out a document. And so they offered a few other suggestions, like creating a personalized photo book that captures information. So even [inaudible 00:50:41] community, they will do this too. Kids are little egomaniacs. They like to learn about themselves. They like to talk about themselves. So here's what it looked like when you had a hearing test, this was your ABR. We got pictures. These were some of your TODs, these were some of your SRPs, these are your audiologists. These were the people who went back and forth to help you out before you can even remember anything. These are the people, these are your communities, these are the devices that you have. It's part of their identity. It does not have to define them. It doesn't have to encapsulate them. It's not all of them, it's part of them.
Watching videos. YouTube, again, this is where technology can be leveraged to our advantage. Ms. Rachel, I know she's a banger right now. Every kid loves Ms. Rachel. You can go on there and watch videos with interpreters in a corner and have exposure to that. Pretending and playing. We all spend time at home pretending like they're making food or making ice cream, or doing a doctor's check. What about messing around and playing like you're doing a hearing test? If they're drawing pictures of themselves as they get a little bit older, you call out their ears to call out their hearing aid, so you can talk about that. You can do it as a painting. Lots of different ways.
So I wanted to bring this home a little bit as we get to the end and thinking about this concept of deaf identity also kind of in contrast to the capacity as here. And so again, I know I'm a person who communicates through spoken language. I don't experience a lot of challenges with my articulation skills. I'm very palatable as a deaf person. When I walk into my hospital, they're like, "Yay! we got Mike. You can hear. This is amazing. We've got to deaf person works for us." But my experience, again, is very much rooted in privilege, and so I know that it's really different to support me as a psychologist than maybe someone who communicates in ASL. And so when we think about kids, oh, well, does that deaf child feel supported in recognizing, understanding and embracing their own hearing loss?
I thought the Richard Rodgers talk was amazing yesterday, and really loved that. Psychological safety, coming from a place of love. How do we inspire your joy? How do we make kids feel like they can embrace their hearing loss and their identity in a way that's fun? When we hear comments like, "They just need to wear their devices or they don't want to use the FM," okay, but why that though? What's driving them, what's their opinion? So having those conversations is important. Do they think of disability as a dirty word? Do they think it's a bad thing? Do they have shame and guilt about going to a school when their classrooms are [inaudible 00:53:09]? And how do we have conversations to help them assimilate into those environments?
Siblings. They're hesitant to have conversations, they're hesitant to talk. Model all these same things. Tell them how to answer questions, tell them how to explain their hearing aids to their friends. Don't close the window on those siblings talking to you either. You can also show them how to do communication strategies, getting someone's eyeballs, getting their attention, using some praise, using some simple instructions. In the end, this matter is a lot because evidently identity is also tied to development, and those really adorable one, two, three four-year-olds are going to turn into teenagers and tweens, and just by nature of development, they want to be, quote, unquote, "Normal." They want to fit in.
And I want my children, my patients, the families I serve to have some positive experience in association with their identity, because when they get to that teen years, it's going to be hard. Some of those hits are going to come, and can I build up a little bit of armor? Can I build up a little protection where they've met other adults, they've met other kids, have gone to camps, they've had positive experiences, so that when that first peer who makes one of them hits, they can understand that and feel a little bit more strong.
If we don't take the time to have conversation and discuss what it means to deaf, we don't help them build up an identity in that way, then those kids will really, really struggle and they constantly compare their hearing loss to those who don't have hearing loss. That's the only framework to which they see. For some people, deafness is the core lens through which they do their world. For some people, it's a small piece of it. For some, it's in the middle. There's no right or wrong way to have a deaf identity, but building some and fostering some can be really protective for when your kids get older. Thank you. Yes.