Our 10th Child’s Voice Podcast was released on March 20, 2019. To listen to the Podcast, please Click Here.
(Transcription at the bottom!)
On episode 10 of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Jessica interview Theresa Harp about her experience counseling families of children newly diagnosed with hearing loss through their decision-making process as they determine what mode or modes of communication to use with their child. Theresa is a speech-language pathologist, a certified Listening and Spoken Language Specialist, and fluent in American Sign Language. She owns a private practice called Sound Speech in Watchung, NJ that provides aural habilitation, speech therapy, auditory-verbal therapy, and American Sign Language instruction to children with hearing loss and their families. She also works as a New Jersey Early Intervention Hearing Consultant.
Tune in to the episode to hear all about…
- Theresa’s role as a Hearing Consultant in New Jersey – what this means & what important work she is doing with children with hearing loss and their families.
- The different communication modes available to children with hearing loss and their families – from Listening and Spoken Language to American Sign Language to Cued Speech and more.
- How families go about making this decision, what families need to know on this topic, and how professionals can support families during their decision-making process.
- And more!
Theresa as well as Jessica & Tatum shared several resources throughout the conversation, including…
- Theresa’s blog where she wrote a recent post about online resources available to families & professionals. Her blog can be found at soundspeechnj.com/sound-speech
- The Facebook group, The Radical Middle Project in Deaf Education
- The book, Counseling Persons with Communication Disorders and their Families, by David Luterman
Where to Find Theresa
- On Facebook @soundspeechtherapy
- On Instagram @soundspeech
- And her company’s website, soundspeechnj.com
Where to Find Us
This episode was recorded by Michael McCortney and edited by John McCortney.
Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.
Tatum: Welcome to All Ears at Child’s Voice, a podcast, discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. We’re your hosts. I’m Tatum Fritz.
Jessica: And I’m Jessica Brock. Last week we talked to Uma Soman about how best to support children with hearing loss throughout their educational careers. It was a great episode and both Tatum and I learned a lot while speaking with Uma, so be sure to go back and listen if you haven’t yet.
Tatum: Today on the show we will be beginning a two part series on modes of communication. Today we’ll be talking to our guest, Theresa Harp, about counseling families through their decision-making process as– as they determined what mode or modes of communication to use with their children with hearing loss, and in two weeks we will be speaking with a parent of a child with hearing loss and her family’s decision to use both listening and spoken language and sign language with their son. Theresa, welcome to the show.
Theresa : Thank you. Thank you so much for having me.
Jessica: You’re welcome. So Theresa is a speech-language pathologist as well as a certified listening and spoken language specialist. In addition to being Listening and Spoken Language Certified, Theresa is fluent in American Sign Language. Theresa received her bachelor’s degree from Loyola University in Maryland and her masters from George Washington University in DC. She owns a private practice in Watchung, New Jersey. Did I say that right?
Theresa : You did, yup.
Jessica: Okay, she owns a private practice in Watchung, New Jersey called Sound Speech that provides aural habilitation, speech therapy, auditory-verbal therapy as well as American Sign Language instruction to children with hearing loss and their families. Theresa, Do you mind telling us a bit more about your private practice and the services your practice offers?
Theresa : Sure, I would love to. Um, I actually started my private practice back in 2014. And that was out of my home, but then I had kids and it was very difficult to hide the children, hide the dog and run a business. So this past June, June of 2018, I found a brick and mortar location and I have been practicing there ever since. And it’s going really well. I own the practice and I’m currently the sole provider and I focus exclusively, like you said, on families who have children with hearing loss. And so that includes, you know, babies who are just a few months old and we have some kids that I’m treating that are, you know, in the middle school and early high school age range as well. Technology can range from hearing aids to BAHAs to cochlear implants. And as you mentioned, we offer listening and spoken language therapy, but also can provide a total communication approach and sign language instruction as well, depending upon what the families have chosen for their child.
Tatum: That’s awesome, that’s so exciting that you moved into a brick and mortar.
Theresa : It was a really good shift for me. I loved being, you know, out of the house. I think there’s, there are pros and cons to every, every option, but it’s been a nice transition and it’s a nice place to come and I’ve been just sort of focused on trying to set up the environment so that it’s conducive to kids of all ages and all of that. But it’s been a great experience. I’m really enjoying it.
Jessica: That’s awesome. It’s probably difficult to limit background noise in the house with other kids and the dog running around.
Theresa : Yeah. I used to have to shuffle them out the door and have my husband or my mom come and get everyone out of the house. And um, you know, it’s like, pay no attention to the man behind the curtain type of thing. And so that got a little bit tiring very quickly. So this is, this is a better fit for me.
Jessica: Well, we are happy for you.
Tatum: Yeah, congratulations.
Theresa : Thank you. Thank you very much.
Jessica: So Theresa additionally works as a New Jersey Early Intervention Hearing Consultant and meets with families of children who are newly diagnosed with hearing loss to help counsel them as they decide on a mode of communication to pursue with their children. We’ll get more into this when we get into our main discussion. But Theresa, do you mind briefly telling us about this program and your role as a hearing consultant?
Theresa : Absolutely. This is a grant funded role that began, I guess it’s been about eight years now. Uh, there’s myself and there’s one other hearing consultant. And between the two of us, we cover the state of New Jersey. The way that works is anytime a family enters Early Intervention and there’s a diagnosed hearing loss that family is getting referred to either myself or to my coworker. We’re reaching out to that family as a free resource to them to go over really anything and everything that they’re ready to hear. Everything is done remotely so, you know, either by phone or by web cam technology because we do cover the whole state and there’s only two of us, so we use webcam and phone technology to reach out to families and really just sort of meet them where they’re at and, and figure out, you know, what information they’ve been given so far about hearing loss, helping them understand things like audiology reports, test results, recommendations, answering whatever questions they may have and offering them input and strategies about things that they can do to support their child’s language development. And really all of that has to be done from a very unbiased but comprehensive perspective so that we can sort of help them get started on this journey and figure out a path forward.
Tatum: Yeah That was going to be my first question about traveling just because Jessica and I work in early intervention, so we travel a lot.
Theresa : Yes.
Tatum: But that’s awesome that you’re able to use the technology to reach people all over.
Theresa : Yes, I did Early Intervention for quite a long time and I feel the struggle. I feel your pain, uh, you know, sometimes you feel like a traveling salesman you know, you’re in your car, you’re eating in your car, you’ve got a trunk full of toys and all sorts of things, papers and all of that. So yes, I hear you.
Jessica: So we’re recording this obviously before we air it, so we’re recording this in January for our listeners and it’s snowing aggressively outside. So we are stuck inside, um, because the roads are so terrible. It’s good that you’re able to do that remotely because otherwise you would probably be spending all your time on the road all over….
Theresa : Absolutely. Absolutely.
Jessica: Um, so I have so many more questions about your role as a hearing consultant, but maybe before we jump into our main discussion, we like asking our guests every week for a story from the past week. So it could be anything, something cute or something funny or heartwarming. Does anything for you come to mind?
Theresa : A lot of things do come to mind. I actually had a session earlier today with a little girl who I’ve been seeing, I see her privately now, but I saw her when she was a baby in Early Intervention, and we’ve been working on communication repair strategies and you know, self advocacy, things like that when she doesn’t hear something, we really have been focused on us you know helping her ask for repetition or clarification. And I was talking with her and her mom because of course parents are in all the sessions, um, and her mother was talking to me and I didn’t quite catch what her mom said. So I looked at her and I, and I said, “What, Huh?” something like that, but something exactly what we tell our kids not to do. And the little girl who I was seeing, she looked at me and she said, “Ms. Theresa, “I think you mean, ‘Can you say that again, please?'” So she totally caught me. She had overheard what we were saying. She heard what I said and she corrected me, which I thought was really great. And then she proceeded to say to me, “I think you may need earring aids, Ms. Theresa.” Not hearing aids, but earring aids.
Jessica: That’s very funny. You must have been so proud of her, but also so..
Theresa : Yes, absolutely. We, we learn from our mistakes. Right. And when you, uh, when you’re your clients or your students are catching your own mistakes, I think that’s really great.
Tatum: Yeah, that’s how, you know, they really got it.
Theresa : Exactly.
Tatum: So why don’t we go ahead and jump into the main discussion now. Before we go any further, do you mind defining what we mean when we say communication mode?
Theresa : Sure. When I think of communication mode, I’m essentially referring to the way in which a family’s communicating with their child and that could be spoken language, English, Spanish, it could be a visual language system, such as American Sign Language or ASL as we call it, or a combination of those approaches.
Tatum: So you kinda got into this, but, um, what other possible communication modes are there for children with hearing loss?
Theresa : Well, I think there are many, but the most common ones that families seem to be choosing are the ones that I mentioned, um, spoken language, sign language, you know, and there’s a couple of different caveats to that which we could talk about. And then total communication. The meaning of, that seems to vary depending upon geography, location. But, um, when I think of total communication, I’m really thinking of families or children using spoken language, sign language, gestures, really any sort of modality or cue that might assist them in communicating. There’s also cued speech. I don’t know if you guys are seeing that all that often anymore. I’m really not, but that I think always should be mentioned and noted. And that’s really a communication modality where you’re using a simple hand movement around your mouth or around your face that will help to clarify words that might otherwise be misinterpreted or misunderstood for someone with hearing loss. Like for example, “man” versus “pan”, you might have a special cue by your hand to help someone who’s using lip reading to differentiate between those words that look similar.
Tatum: Yeah. In graduate school I had one student who was using cued speech and it was a special circumstance.
Jessica: And I’ve had one kiddo consider cued speech. There’s a program in the suburbs here in Chicago that teaches through cued speech. Um, but I feel like most of our kids…. We primarily work in listening and spoken language, but a lot of our kids, the big question is to include sign, to not include sign, to do sort of a combination of…. And it sounds like that’s similar to your experience.
Theresa : It is. Yeah. And you know, sometimes you get in your bubble, like your geography bubble and you forget that, you know, a lot of the trends and the things that you’re seeing might be specific to location. But as I’ve been talking with people across the country, it really seems that the two biggest modalities that are most common are spoken language and then total communication. Um, so, you know, spoken language paired with the use of sign language and I think, you know, in years back when I first started, because I’ve been practicing for about 10 years, and when I first started, I’ve always done kids with hearing loss, but when I first started there was a big differentiation or distinction between auditory-oral versus auditory-verbal. It was, it really was essentially the same thing. I mean auditory-oral was referring to, um, spoken language, but you could use, you may have some visual cues like lip reading and gestures and things like that, um, not with sign language, but just spoken language with the use of lip reading or speech reading versus auditory verbal, which is I think what people pictured at least years back of the therapist sitting there with a listening hoop in front of her mouth. And you couldn’t see any visual accused like speech reading and things like that. But now it seems like we’ve sort of done away with that. I don’t know if you guys are seeing the same thing in Chicago, but at least in the New Jersey, New York area, it seems to just be listening and spoken language now, which I think is a good thing.
Tatum: Yeah, I think we definitely see the same thing. I remember in undergrad, the auditory-oral versus auditory-verbal being emphasized a lot, but once I got to grad school nobody really spoke about that distinction unless they were talking about the past.
Theresa : Yeah, exactly.
Jessica: So you mentioned this when you were talking about your role as a hearing consultant that in New Jersey, you and this other hearing consultant, the two of you talk to families about selecting a communication mode for their child and for their family. Has the process always been that way for families to choose or is that a relatively new program?
Theresa : That’s always been something that we have included as part of the hearing consultant initiative is talking about that piece. And a big reason for that was because what we were finding was families were, you know, getting enrolled in Early Intervention and getting setup with service providers and programs and they hadn’t been given any information about the different communication options. They didn’t know that there were options. They didn’t know what those options were because nobody had told them or if someone had told them, you know, perhaps they told them at a vulnerable time or that information wasn’t really processed. Um, and so the point is that families weren’t hearing it one way or another and they weren’t understanding it. So we’ve always made sure that that has been a component of the hearing consultant initiative. And in my work, in my private practice, most families, by the time they get to me, have chosen an approach, a communication modality. But of course, you know, and I’m sure we’ll, we’ll touch upon this as we’re talking, but as kids get older, their strengths and their needs may change. And so your approach and your choices may also need to change with that. Um, and so one of the components in my role in private practice is helping to guide families and figure out, okay, is this approach working? Are we seeing the results that we’d expect to see and that we want to see? And if not, what do we need to do to pivot to make sure that we can achieve those goals that the family has set out to work on?
Jessica: I love that you guys have this program in place and that you’re also continuing to guide families as they get older. I feel like when I first start seeing a child in early intervention, there’s so much information to cover and sometimes that intentional conversation about communication modality gets lost in the shuffle of, maybe I’m their second provider or maybe they’ve already made a decision. Maybe you know, maybe someone else has talked about it. Tatum, you’re credentialed as an Early Intervention evaluator. Does that conversation come up in evaluations with families? Because sometimes I feel like it doesn’t ever really come up in therapy sessions.
Tatum: I feel the same way. And then just before I answer that question, Jessica, just to touch on it too, like we are listening and spoken language program. So by the time a kid gets to us, it feels like, okay, well they’re working with the listening and spoken language provider, at this point we’re going to do listening and spoken language therapy. And I don’t know all the time like how intentional the family was about selecting that. And then often, other times families might get sent to a provider outside our agency that does sign automatically. Um, and I don’t know how intentional families are about choosing to incorporate those signs. And then just Jessica’s right, I did recently start doing initial evaluations in Chicago and I feel like sometimes it’s touched on lightly. In my evaluations I’ll ask families like if they thought about it. But so much is happening that day that um not very much time is spent on it. And oftentimes the way it works in Illinois at least is that initial evaluation might be, there might be multiple providers there. So I might be there doing the aural rehabilitation eval. But another provider might be there doing a speech therapy evaluation and that provider may or may not have a background in hearing loss and then everyone in our system gets a developmental therapy eval. And that provider most likely does not have a background in hearing loss.
Jessica: It’s a lot going on.
Tatum: So there’s multiple people there who are trying to get their evaluation done and there’s just like not very much space for it. We do refer families to this Illinois program called Guide By Your Side and at that point they might get in contact with a parent guide who might speak more to them about it, I’m just not sure how intentionally the family has made that decision or if it’s kind of been made for them by who they were referred to first or, unless, sometimes we have these, what I would think of as “rock star” families that have done a lot of research on their own and they really understand like the kind of approach that they’re in and the decision behind it. But those are, that doesn’t always happen because often with the family’s grieving or they might not have like the institutional knowledge to do that research. So I love that New Jersey has this program.
Theresa : Yeah, I think you bring up a good point. I think a lot of it is dependent upon who the family interacts with first and who they get assigned to in terms of, uh, you know, an Early Intervention evaluation or private evaluation or whatever. Whoever the first players are that are involved in the child and the family’s case can really play a huge role whether those professionals realize it or not in, you know, the child and the family’s decision about a communication modality. Families don’t know what they don’t know for them, this is all new and you know, with the majority of children with hearing loss being born to hearing families, you know, for 90 to 94 percent of the families that we’re talking about, this is completely brand new to them and they just don’t know what’s out there and they don’t know that there are choices and they don’t know what those choices are. And it’s also interesting to see as I collaborate with other professionals, you know professionals who don’t specialize in hearing loss, whether that’s a PT or an OT, you know, other disciplines. They encounter a child with hearing loss and they just assume, whether they assume that’s to use sign language or they assume that’s to use spoken language. They just make these assumptions because they don’t realize that not every child with hearing loss uses sign language and they don’t realize that not every child with hearing loss uses listening and spoken language. So it’s just interesting to see how people’s, you know, experiences and biases and backgrounds can really shape what path the family winds up on and we really want to make sure, at least in New Jersey, that we’re helping families to know what all of their options are so that they are the decision makers.
Jessica: I love too that you guys are sort of a follow up in the timeline of a child’s diagnosis, that you’re not contacting that family at the audiology booth when they find out the results of the ABR.
Theresa : Yes.
Jessica: Because I think you mentioned it’s a vulnerable time when they get this information oftentimes. And so I don’t know that they’re always hearing it.
Theresa : Mhhmhhm
Jessica: So when you do get in contact with these families, what information and resources are you providing to the families? Or is it mostly just, it sounds like you first start by meeting them where they’re at?
Theresa : Yeah, and in my role is the hearing consultant, myself and the other hearing consultant, we have created and put together packets of comprehensive, unbiased information that we share with families. It’s a pretty thorough and detailed packet and it covers things from choosing a communication mode to communication strategies to factors to consider with your auditory environment to professional and parent-driven websites that are reputable websites that can offer additional information. So a whole host of topics that we cover. And so every family gets that packet and gets that information. Um, and they have that, you know, for their time in Early Intervention and you know, people are ready for certain information at certain points. Not everyone’s ready for all of that up front and you know, people, some people kind of want to take a little bit at a time and then you’ve got other types of families that want anything and everything as much information as they can up front. So you sort of have to figure out what the family’s ready for and where to prioritize and where to start. So we use that packet as a guide and as talking points for families. And then just sort of get information from them, let them talk and share what they’ve been through so far, what appointments they’ve had and what their understanding is of the information that they’ve been given. And it’s funny, you know, a lot of families have a lot of questions. “Oh my gosh, yes. I’m so happy you called. I’ve got a whole list of things to ask you.” And other families they can’t think of a question. It’s just very interesting to see how different people deal with different types of, of information and you sort of have to factor that in as you’re engaging with families and guiding them so that way you can give them the information that they are looking for when they’re looking for it and when they’re ready to hear it.
Jessica: Do you find that difficult to do over the phone?
Theresa : I think it’s one of the hardest things about doing it by phone. When we had the initial conversation with families, it’s almost always by phone. And so that can be a little bit limiting, um, but when we have our follow-up conversation with families, it’s typically taking place with the Early Intervention case manager or service coordinator as we call them in New Jersey. That meeting is designed to take place by webcam and it just makes for such a different type of interaction. Um, families tend to be more open. And I think for me the biggest asset to doing it via webcam is being able to read body language and, you know, I think of one time when I had a conversation with a specific family and it was the second conversation. So the service coordinator was there and the technology wasn’t working for whatever reason, you know, because that’s how technology goes. So we had to do the meeting by phone and you know, I went through this whole thing, we’ve probably had a 45-minute conversation, and it was a little bit one sided. Mom was a little bit difficult to get involved in the conversation. But, you know, I thought, okay, great. I went over everything I wanted to go over. I feel like this was successful, you know, these are all the things I’m thinking afterwards. And you know, about five minutes after that I get a phone call from the case manager, from the service coordinator, and she said, “I just wanted to let you know, if you thought it was a little bit awkward, mom was basically crying throughout that whole conversation.” And I just felt terrible because I had no idea and had that meeting taken place by Webcam, I think the conversation would have gone very differently. Um, but it’s just so hard to gauge that when you’re talking by phone. Um, and so the way that I think is most conducive to learning and to an open conversation is really to have that visual piece so that face-to-face interaction via webcam. It’s just so important.
Jessica: Yeah this is, it’s a really sensitive conversation that you’re having with families. Both because they’re very overwhelmed with all of the information, I can imagine. But also they’re probably thinking like, this is setting up the rest of my child’s life, their education, the support that they need, even if they’re not consciously thinking that, that’s really kind of what we’re talking about. I mean, things can certainly change later on and you’re not signing a contract to spend the rest of your life signing or not. But it’s very heavy. And so I can imagine it being really difficult. Even over webcam. I mean, It seems really emotionally heavy.
Theresa : It is heavy. Yeah, and overwhelming. Um, and of course with the hearing consultant role, we’re grant funded, so we’re very limited with the number of interactions that we have with families. And so sometimes you’re trying to cram in these big topics and these conversations with families when they’re just not ready but that’s when you’re supposed to be doing it because that’s what the state says. And so you’re trying to balance all of that. But at the same time be respectful of families where they are at emotionally and what they’re ready to take on and to take in. So that’s why I love the private practice piece because I can have that ongoing relationship with families where they’re coming to the office and it’s very personal but we have that connection in that relationship. We can build that rapport and that really lends itself to I think a much more collaborative dynamic which can make such a huge difference as you know in caring for children who are deaf and hard of hearing.
Jessica: So when you’re communicating with families about deciding on a communication mode, either in your private practice or in your role as a hearing consultant, you have this comprehensive packet of information that helps outline all of the information that they need to know, but how do you help guide them in actually deciding on what’s most appropriate for their child?
Theresa : Yeah, that’s a great question. We have a resource that we devoted exclusively to choosing the communication option and it’s really a summary of what the different communication modes are. And I apologize I’m using communication options, communication modes, all those terms sort of interchangeably, but they’re all referring to the same thing. This handout will look at a summary of what each of those communication modes is so that families can get a better understanding of that. But I think more importantly, quite frankly, there’s a list of questions that parents can ask themselves, the factors that they can consider when choosing a communication mode. And so what I sort of, how I tend to open it up with families is I ask them what they envision for their child five years from now, 10 years from now, what do they picture when they picture their child, you know, growing up. And the other piece of the puzzle I think that is always important to consider is the amount of auditory access. Because um, if we’re talking about choosing a spoken language outcome, of course we need to make sure that that child has the auditory access to lend itself towards that communication outcome. So, you know, if we’re focused on spoken language, we need access to spoken language. So we talk about how much is your child hearing, how much is your child getting acoustically? And then figuring out what the next step forward would be. And in terms of, you know, sign language, the child is probably like a few months old, we don’t really have a whole lot of information yet about that child. The family doesn’t know a whole lot about that child yet. Um, but a lot of families tend to say, well, we picture spoken language, but if you think sign language would be good or you know, we’ll, we’ll do anything and if we need to add in sign language, then we have that as a, as an added bonus. So we can talk about that and see if that might be something that they want to implement. But I think it sort of evolves as they go forward. You know, and what families say in their initial conversation with me may be very different from what they say, maybe six months or a year or two down the line.
Tatum: You touched on this a little bit already with what you said about auditory access, but are there ever any times in which a communication mode may not be appropriate for certain children? And then how do you counsel families through that?
Theresa: Yeah, I think that’s a really hard piece because there are cases where a child isn’t getting the acoustic information, the auditory information that they need in order for listening and spoken language to be a realistic and viable outcome for that child. And that can be a really difficult conversation to have with families and it typically isn’t just one conversation, at least in my experience. You know, in some cases, although rare, there may be genetic conditions or anatomical anomalies where, you know, the anatomy does not lend itself to spoken language. They might not have an auditory nerve or the nerve may be underdeveloped. Cochleas might not be conducive to a cochlear implant. And so sometimes families aren’t ready to hear that and they aren’t ready to, to process that. And of course there’s also times where children have additional disabilities or additional diagnoses where there may be some cognitive implications. And the spoken language piece is just not coming. It’s not developing at the rate at which it should be. Even with cochlear implants, and I’m thinking I’ve had a few families where we’ve had to have that conversation multiple times to help them see what some of the challenges are that their child might be experiencing with spoken language and to let them sort of process that and see what some of the benefits are to using some sign language and sign support and then I think once they start to see some success with that, they’re more willing to move forward.
Jessica: It can be very difficult I think for families to picture something different than what they initially pictured in terms of communication mode and they just want their child to be successful and be able to communicate, so if they’re able to find resources that allow their child to do that, then that probably makes transitioning away from an expectation a little bit easier. Not that it ever is easy.
Tatum: Yeah. I’m just thinking how nice it is to have a hearing consultant on the team too, because oftentimes that conversation falls almost solely to us if it has to come up. And as their ongoing provider we can develop nice rapport, but sometimes is nice to have a third party come in and also be able to speak.
Jessica: Theresa, what do you think most influences a family’s decision on choosing a communication mode?
Theresa: Well, I think that, you know, because the majority of kids who are deaf and hard of hearing are born to hearing families, I think that piece alone really plays a vital part in families’ decisions to choose, what I’m seeing anyway, in my experience, a listening and spoken language outcome. It tends to be the majority of families that I’m working with are focused at least primarily in the beginning of their journey on spoken language because that’s what they know. That’s their language. That’s what they’ve always known and used. It’s sort of like having a child born who speaks Spanish and the family only speaks English and you’re like, okay, now we have to learn a whole new language to try and communicate. With our families that’s not always a realistic approach. And in cases where that might be not necessary or that’s the necessity, then of course you do what you need to do for your child. You do anything you have to do for your baby, but, um, because families use English and they’re used to using spoken language that tends to be what they’re choosing. And most families have never met a deaf adult. They’ve never met someone with hearing loss. They might not know anyone who uses sign language. So this is sort of outside of their experience, outside of maybe their comfort zone. And I think that’s why it’s important that families do learn all of their options. In New Jersey we’re really building up a program to offer families the opportunity to meet deaf adults who use ASL, who are successful in both the hearing world and the Deaf community so that families can have exposure to that as well. But I think first and foremost, the majority of families in this area seem to be choosing the spoken language approach. And that’s because that’s what they know and that’s what they’re comfortable with. And especially now with today, the technology, it’s amazing what hearing aids and cochlear implants can do and really the possibilities are endless thanks to all of that.
Jessica: One of the questions that I have a difficult time answering is when families ask me about outcomes and expected outcomes for children who signed versus expected outcomes for children who are listening and spoken language versus expected outcomes for kids who were exposed to sign language before they got their implants and then were listening and spoken language after. And I, I have a very difficult time answering this question because I’ve read the research none of it can be directly applied to one child and so I have a difficult time knowing you know, what to say and that situation. Is there information or other resources that you can provide to families who might be asking those types of questions?
Theresa: That is a very hard question to answer.
Jessica: Come on Theresa, we’re holding out for you!
Theresa: No I empathize with you. I felt the same way. I have the same struggle and I hear you, I feel exactly the same way. I think that, um, you know, everything obviously we’re evidenced, we use evidence-based practice and we are research based as we should be, but um, I mean I think at the end of the day families need to do what works best for them and what they feel comfortable with and you don’t, they might not know that from the beginning. And that’s okay. I think you do what feels right and what fits and you modify as you go. I mean, like I say to families, this is not a permanent decision. This does not need to be, you know, a one-time decision, a one size fits all. You do what feels right right now with the information that we have and what we know and then as your child grows and as we’re going, if we need to adjust and modify, we will do that. Regardless of what option you’re choosing, I think you need to commit and families need to commit. They need to really give, you know, give it time and give it the commitment that it deserves and the dedication that it deserves to really implement that communication mode wholeheartedly as much as they can. Because what works for one child and one family is not necessarily the same thing as what works for another.
Jessica: I love that answer because it encourages families to both commit, but also know that this isn’t a lifelong commitment, that things can change. I feel like it’s hard to find that balance between a family really, you know, 100 percent committing to a certain mode and all of the therapy and new information that comes with that. But also that can be really scary, right? If they don’t know that it’s 100 percent going to work for their kiddo and you’re saying like it’s, you know, we need to really give this a good shot, then that can be kind of a tough balance. So that answer I feel like helps them be confident that we’re going to try this, we’re going to see how it goes. We’re going to really do this the way that, whether it’s listening and spoken language or sign or total communication, but also like it’s okay if that doesn’t work, you know, in six months it’s okay if we have new information that we need to switch to something else or try something.
Tatum: I liked what you say about commitment too. I know you mentioned earlier the challenges of learning an entirely new language, um, to work with your child and to communicate with your child. But listening and spoken language is a challenge too. Getting the devices on, getting to your audiology appointments, sticking to your therapy schedule. Um, so do you talk to families about like how big of a commitment both options are?
Theresa: Yes, and I think it’s sort of one of those things that you don’t really realize until you’re in it, until you start doing it exactly what all of that entails. But absolutely. Um, you know, it’s not just, hey you get hearing aids, you activate your cochlear implants and you’re good to go. I mean we’re talking about follow up appointments and testing and we’re talking about really having all of these listening and spoken language strategies become second nature to the point where they’re interwoven throughout your day. And of course doesn’t happen overnight. And so there’s a lot of ongoing follow up. This is a long road. It doesn’t just happen, you know, in a year. It doesn’t happen in a day. Doesn’t happen in a week. It just, it takes time. So I don’t think families can fully grasp that initially because they just, they haven’t seen this before. They haven’t been exposed to it before until they start going. But you know, that’s another reason why I think it’s so important for families to talk with other families and be connected with other families of kids with hearing loss who have been through this who are maybe a little bit further down the road and can share their insights and their experiences about what to expect. And how, regardless of what option you’re choosing, it’s going to be hard work, but the outcomes can be really amazing.
Jessica: Yeah. I found that to be helpful for a lot of my families too, getting them in touch with other families who have been through it before. Really just you can like see the relief on their faces when you go to their house and they’re telling you about, you know, whoever they met last week because it’s just takes away some of that fear of unknown-ness
Tatum: So we’ve talked a lot about a family making their personal decision, and we’ve talked a little bit about situations in which that decision can almost be made for them. Does access to services ever play a role in what communication mode families are able to use? So maybe there’s not a place to learn sign language or there’s not a listening and spoken language specialist nearby. How do you help families deal with this? And does it play a role?
Theresa: So I do think that access to services can be a barrier. You know, depending on where you live, what’s nearby, you may have different resources in your area and at least within New Jersey there seems to be a variation in terms of programs, early intervention programs and school-age programs for kids with hearing loss. It seems that the northern half of the state is more connected to programs like that. Whereas the southern part of the state, there’s not really any programs in that area designed for kids with hearing loss, at least from a spoken language outcome. And there’s fewer service providers that specialize in hearing loss. And so yes, these are barriers, but I do think that there are ways around them. And I think it’s important that we as professionals are helping families get access to the resources that they need. So, you know, for example, there’s a growing number of listening and spoken language specialists who are offering telepractice now, and not just in New Jersey but across the US. And so being able to connect parents with some of those practitioners who might be able to offer some listening and spoken language therapy, by webcam, which is tremendous. And then, you know, in terms of learning sign language, I think there are so many resources that are out there. There’s YouTube channels and there’s online courses and there’s you know, Facebook groups and Facebook pages. And so it’s really a matter more of helping families find these resources and letting them know that they are out there and trying to connect them to those resources. And that I think can often be the bigger challenge.
Jessica: I feel like that’s a great piece of advice for providers to be the ones to look for that because parents are, they’re so overwhelmed and they don’t know what are the reliable resources and what aren’t and they don’t probably know about teletherapy. They’re still learning like what an audiogram is. So for providers to be able to help them do some of the more nitty gritty work of finding other resources out there that are reliable I think is a good thing for families.
Theresa: Yeah, I agree. They’re overwhelmed and this is new to them. So, you know, whatever resources we have to be able to share that with families is so important. And you know, again, being able to connect families to other families and you know, now with Facebook and social media, parents can connect with other parents instantaneously. I mean these are huge assets, these Facebook groups, and while certainly they have their limitations and they’re not at all to take the place of professional advice and counsel and things like that. There’s something to be said for that family connection and for a parent to be able to connect with other parents in any part of the world, in the blink of an eye without having to leave their home. And take some of the pressure off of families of having to meet people in person where they might be a little bit nervous or emotional, anxious, things like that. With parents being able to connect with other parents that way they can see what resources other families are aware of and other resources that other families are using. And then it sort of helps parents stay more informed and connected.
Jessica: Technology has really changed you every facet of this profession. And the resources that families now have available to them are just, I feel like they’re just exploding like both socially and emotionally. And then also all the hearing technology is just kind of incredible.
Tatum: Yeah. And not to toot our own horn, but that’s why we wanted to start this podcast.
Theresa: I know. I’ve been sharing it with the families I talk to.
Jessica: Oh you are, oh that makes me happy
Theresa: Yes, absolutely.
Jessica: Oh that’s wonderful.
Tatum: Just as an overarching question, what do you find most difficult about counseling families on communication mode?
Tatum: I know it’s a tough one.
Theresa: That’s a hard one. Um, I think there’s, there’s a few challenges. One of the challenges that I find is families who aren’t yet ready to hear what you have to say and maybe just aren’t open to getting information. They just aren’t, they’re very closed off. That can be challenging and it’s understandable. It’s through no fault of the family of course, but that can be very challenging from a professional standpoint and trying to reach that family because of course, you know, if you don’t have a rapport relationship with a parent they’re not going to buy into what you have to say and it’s really hard to get anywhere. It’s really hard to make progress in terms of their child’s progress in implementing strategies and all of that, but they’re just not ready to listen. So I think that can be one of the biggest challenges on my end in terms of connecting with families and trying to provide them with information about communication modes. Um, and then of course, you know, the emotional piece and families that are overwhelmed and emotional, um, that can be difficult to sort of, to navigate, you know, they don’t teach you those things in school. We didn’t take any courses on counseling and, emotions and things like that. So that’s sort of that baptism by fire. You learn as you go.
Jessica: there’s a book about counseling families with communication disorders…
Tatum: Yeah, what’s his name? I was obsessed with it.
Jessica: We’ll have to link it.
Tatum: I don’t remember. I feel like David Loderman?
Theresa: Oh yes!
Tatum: We had to read that in graduate school and I was like obsessed with it.
Jessica: Yeah, he’s an audiologist, right? So He’s, I think,
Tatum: I think he definitely works in hearing loss.
Theresa: I think he’s an SLP. For some reason I was thinking he did stuttering, but…
Tatum: It’s been too long since graduate school but we will link that.
Tatum: I know what book Jessica is referencing and it was very life altering for me, so we’ll have to put it in the…
Jessica: The show notes.
Tatum: The show notes, yes. Those very much sound like the same challenges that we just have in early intervention in general, even past choosing a communication mode, getting the devices on, getting parents to start using parallel talk. Sometimes it all comes back to, they’re not ready for it or just the grieving process. So our field as a whole is definitely dealing with that.
Jessica: Do you think that it’s possible to stay neutral when providing information about communication mode? How do you remain unbiased? How do you advise other professionals to remain unbiased?
Theresa: Well, I do think that everyone has some inherent bias that you just can’t escape. I think that’s a given. It’s just part of you as a person. But being conscious of that, being aware of that, and keeping it in check is so important. Um, I don’t know that I really have any secrets or any answers, but I’m just constantly, you know, reminding myself that I’m the outsider. I may be the expert in hearing loss in this relationship, but I am not the expert in this child and I’m not the expert in the family. And I never want a family to look back and remember me in the process of choosing a communication option. It needs to be their decision. And I mean that in the best of ways. I’d love for them to remember me, but not for them to remember me as they’re choosing how they want to communicate with their child. This decision, it has to be 100 percent their decision. And I work really hard to be impartial and to all of their options to them. And I say to family, you know, I say to families, listen, I have knowledge in listening and spoken language. I have knowledge and American Sign Language. My husband has family members who are Deaf, you know, capital D, Deaf. And so I feel like I can kind of empathize with, with both sides of the coin. And try to say that to them so that they understand that I’m not trying to sell them on one approach versus another. It’s really a matter of what works best for them. So I do think it is possible to stay neutral, but I think you need to be really conscious of that. So that’s my idea.
Tatum: Yeah. I love what you say about owning your inherent bias. My other degree in undergrad was rhetoric and writing and we learned…it was like drilled into us. You can never be objective, like no piece of news can ever be objective. Um, and that you just have to know that you’re always gonna have that underlying bias that you can’t eliminate, but the best thing you can do is be aware of it. My undergrad that I went to, they were, um, it was in Austin where there’s a big D Deaf community. I was definitely exposed to the hearing loss world first through the American Sign Language side of things. And then I went to Vanderbilt, it was very oral, so I’ve definitely seen both ends and I’ve definitely seen people on both sides not own their bias. So it’s just something that we all need to be aware of.
Jessica: Definitely. There’s a group called The Radical Middle in deaf education. Have you heard of them, Tatum?
Jessica: Um, I can’t remember who runs it. I found them through Facebook, the goal of it, and don’t quote me on this because I’m not a part of the organization, but the goal is to find like a common ground between like that understanding that the decision has to be based on what’s best for the family and it’s not a one-size-fits all decision. We’ll link that too. I feel like I’m doing a terrible job of describing their mission, but it’s basically like they’re looking at different research and different resources for families that can help them with that understanding that we can all be too biased. It’s better to have that mentality of what’s best for the family, so
Theresa: That is so important. I will have to check them out. Um, you know, I think obviously historically this has been a constant theme, you know, spoken language versus sign language and there’s a long history of that as we all know and it seems to come in ebbs and flows and I know recently, at least in this part of the country, there’s been a big push for teaching sign language and using sign language with families and there’s a lot of talk about language deprivation and all of that. I don’t know if you guys are seeing that out by you, but it’s happening a lot over here. I think while I understand the message behind those movements and that movement in particular, I think a lot of it too is misleading and confusing for parents. So I feel very strongly about remaining, I guess you could say radical in the middle or the radical middle because, um, there’s just so many opinions out there. Um, and again, it’s not a one size fits all. So I think it’s really important for families to know that and to feel free to choose what works best for them, not what they’re being told they should or shouldn’t do.
Tatum: So before we wrap up, Theresa, do you have any resources that you share with families once they have made a decision on communication modes?
Theresa: For families that have chosen a spoken language approach, I have, I always recommend the Hearing First website and of course AG Bell’s website. They have some fabulous resources on there. I actually just wrote a blog post for my private practice, Sound Speech, about some of the websites that should not be missed for parents of kids with hearing loss. So if you wanted to see that blog post, you could go to my website which is soundspeechnj.com. But Hearing First and AG Bell are great for listening and spoken language. And then I’m sure you guys are familiar with the website Success for Kids with Hearing Loss.
Theresa: So, that’s a nice resource as well. And I just discovered a website. I’m going to check the name of it because I don’t want to give you misinformation for learning some sign language online. I know there’s like the big ones, ASL Pro and Life Print and some of those, but there’s another website that I just came across as I was preparing this blog post and it was about had some videos that are free tutorials of learning ASL and is sort of categorized by food and drink and basic nouns, household objects, things like that. So for families that are looking to learn about a specific topic or group of signs, they can go to signlanguage101.com.
Jessica: Very cool. Well, we can link all of those in our show notes too, your blog post and Success for Kids with Hearing Loss and all of them. We’ll link them all in our show notes for our listeners. One last question Theresa, do you have any advice for families or professionals regarding anything that we’ve talked about today?
Theresa: So in terms of advice for families and for professionals, and I think this applies to both, but I just, it sounds cliché, but I really do feel strongly about trying not to form judgments or preconceived notions about what you think something might be, um and also to just really keep learning and keep evolving because families don’t have all the answers and we as professionals certainly do not have all the answers. I’ve learned so much in my practice and in my role as the hearing consultant, as I’m meeting more families and meeting more children with hearing loss of different etiologies and backgrounds. I really think just when you think you know about something, something happens, it keeps you on your toes. So really keep learning, keep evolving, and stay connected because the possibilities are endless.
Jessica: That’s perfect.
Tatum: Yeah, I love that.
Jessica: Before we close out, we wanted to fact check ourselves really quickly. So the book on Counseling Persons With Communication Disorders is by David Luterman. We looked that up and then The Radical Middle has a Facebook group and a website called radicalmiddledhh.org. Their official about us information says that they’re a platform for researchers, practitioners, families and members of the deaf community to communicate and collaborate with others who have a variety of expertise across modalities. So that’s a cool initiative that is worth giving a shout out to. So we didn’t want to be spreading false information on our podcast, so we all did some googling and that’s for listeners. So do you want to things up, Tatum.
Tatum: Sure, so thank you so much for joining us, Theresa. This has been amazing. I think Jessica and I have learned a lot from you and it’s also just been really enjoyable talking to you.
Theresa: Thank you. Thank you for having me. It was honestly my pleasure.
Jessica: Listeners, we would love to hear from you and professionals. How do you help guide families through choosing a communication mode that works best? Families, what has your own experience been like? What mode or modes of communication do you use with your child? Please let us know what your thoughts are on today’s episode.
Tatum: Thank you for joining us for another episode of All Ears at Child’s Voice. Be sure to join us for our next episode, we will be speaking with speech-language pathologist and Auditory Verbal therapist, Michael Douglas, about bilingualism and hearing less.
Jessica: It should be a good discussion so please tune in. As always, we released episodes every other week on Wednesdays, so look out for our next one.
Tatum: If you’d like to reach out to us, you can find us on twitter and instagram. I’m @TatumFritzSLP, and Jessica can be found at @jessicabrockSLP
Jessica: And you can also email us at firstname.lastname@example.org and you can find episode show notes and archived episodes at our Child’s Voice website, childsvoicesho.wpengine.com.
Tatum: And then if you’re interested in learning more about Child’s Voice, Child’s Voice is on Facebook as well as twitter and instagram with the handle @childs_voice, no apostrophe, and then before we officially say bye, Theresa, is there any contact information you’d like to leave for our listeners if they’d like to get ahold of you?
Theresa: Sure. You can find me on Facebook, the Facebook page is @soundspeechtherapy and on instagram @soundspeech. And my website is soundspeechnj.com. That’s Sound Speech N J for New Jersey dot com.
Jessica: Perfect. We’ll put all of that in our show notes. Thank you again Theresa so much for joining us and thank you listeners for tuning in. We will see you next time.
Theresa: Thank you.
Child’s Voice Students: BYE, Thanks for listening!