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EHDI – Grand Hall BTo Sign or to Speak: Do I have to choose? Perspectives of Two Pediatricians on Early Language Access for Deaf and Hard of

Hearing (D/HH) ChildrenCasey Judd

February 27, 2017

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>> Testing, testing.>> [Speaker off mic].>> Hi, my name is Rob Nutt and this is Rachel St. John. We

are pediatricians and we will be talking about an exciting topic that is part of our interest, of our groups. To Sign or To Speak. A question that people often struggle with when communicating with a child that is deaf or hard of hearing. The decisions they have to make when that happens. So...we are going to talk about our perspectives in terms of early language access for these kids, okay? Welcome.

So, we have nothing to disclose, however, we are members of the EHDI leadership team. We are very much involved in the national organization and we have a wonderful time doing that.

The objectives of the session are to outline the importance of supporting both spoken and sign language opportunities for infants who are deaf and hard of hearing.

To increase familiarity with current peer-reviewed publications, research regarding bilingualism, as well as spoken language outcomes for deaf children natively exposed to sign language.

And to clarify some common misunderstandings regarding language deprivation and attempts to compare linguistic complexity of American Sign Language and spoken English, okay?

So...so...approximately, so, the range is from one to three, out of 1,000 infants born each year identified to be deaf or hard of hearing. More than 90% of those are born to hearing parents. They'll be deaf children of hearing adults who have very little exposure or knowledge of hearing loss, deafness, language, other than their own. Maybe an oral language other than English, but manual communication is something that is very unfamiliar to the parents.

Through the Program to Enhance the Health & Development of Infants and Children through the AAP, they consider this lack of immediately accessible shared language a developmental emergency.

That's something we'll be focusing on today. As a developmental pediatrician for me, this is a developmental emergency for these kids. That's why we do what we do.

And there's -- I don't disagree with it anymore, about the earlier we identify these children, the better it is, regardless of the language option that you choose for that child. Okay?

So, the guidelines for identification and intervention are based on tight timelines in order to avoid long-term language and cognitive developmental delays.

So the role of the medical providers, and I use that term broadly, the growing national consensus on the importance of early identification and implementation of the support services, the 1, 3, 6 model we have for EHDI. We have a consensus about the timeline this happens so we can all adhere to that and again, the goal is a general mindset, we need to find them, assess them correctly and we need to make sure the published support services are in place for optimal development, okay? I hope everybody agrees with that so I haven't said anything controversial yet.

We'll get to that part of the session.[laughter]

>> So...however, families -- so, we recognize this universal message of education, we all have some agreement with what's going on with that.

We are, the medical providers, especially, parents and everybody who is a stakeholder in what we do have an important role in formulating what we, or Dr. St. John and I are referring to as a universal message, okay? The reason for this is because parents are confused and we're trying to reduce the amount of

confusion, frustration, that parents experience during this time by offering a universal message to these families who are going, already coming to terms with the concept that their child will be different from them.

So...the discussions between parents and professionals are often limited by two things. One is the professionals experience, their personal experience, with, if any, with deaf people, okay? Their training, so, medical school might have 15 minutes of deaf culture and you know, I think, as I talked today, pediatricians during our session yesterday, that that often leads to us making knee-jerk referrals to audiology ENT because pediatricians don't know much about this. Except those who come to EHDI.

So...and also, the convenience of variable resources. This is a big issue that we need to be more aware of and respectful here in the EHDI community. Not everybody is an optimal state with a well-oiled machine. Not everybody is in a metropolitan area. The experience [indiscernible] about the amount of funding. There are some chairs up front for those coming in, if you want to wander to the front.

So...we want to make that point that without a universal message, parents are at risk for being steered into a single language model. This process may not be an effective choice given the needs and goals unique to each child and family. Okay?

You'll hear a lot from me about this tomorrow, but we're starting to touch on it today. I hope we can have a good discussion about it.

Okay...so...with this, I was hoping to try to make this a little more interactive. So...parents of EI teams, traditionally have to choose when communication modality for a family and their deaf or hard of hearing child. So, does anybody want to share an experience you have or share a story that you experienced at one point or another? About this?

>> Do you want to talk into the mic? >> One thing I've encountered in working a lot in parent

support is that often people, the reason they want them to choose one modality is because they don't want them to linger in that "I'm making a decision" phase too long. They feel like they should go one way and get on with it, one way or the other type of thing. I'm not saying I'm going with that, but that's one of the things I've encountered.

>> I guess, for me, when my daughter, when I found out she was four, when she went to kindergarten, the School for the Deaf closed, so there was a choice between going to the auditory oral

program or the ASL program. I was limited because I'm hearing, my husband's hearing, and we didn't speak sign language. So...because my daughter didn't have ASL as her main form of communication, ASL wasn't a choice for us to put her through that.

So...we kind of had to choose.>> I think that raises a really good comment too, which is,

I think Robert touched on this, a lot of times people are really comfortable with what's available in their immediate community and don't feel like they necessarily need to do anything beyond that. And I think, a lot of people, when they come into this process, don't know that that's something they can advocate for. You don't know what you don't know.

When you're presented with an expert, who says here are your two choices, you don't say, aren't there four? Or aren't there six? You say, okay, I'm choosing between these two options and I think that that, the system, sometimes, can be where the limitation starts and that's very challenging.

>> Hi, I'm a pediatrician by trade, but I'm also father of two deaf boys. My first was born in 02. I don't want to take this whole session, but basically, the decision, by two hearing parents for two deaf children, is oral. Okay? We live in St. Louis. There are oral schools. There's Illinois School for the Deaf which is about an hour and a half away. Two hearing parents, one's a pediatrician, one's a speech pathologist, neither knows particularly about ASL. My wife knows a little bit, I knew none. We were basically going the oral route.

So the oral route, that includes my first son with moderate to severe and bilateral hearing aids and my third son, which has a profound, severe to profound loss, after which, after he was diagnosed, we took sign language classes right away. And actually, our brother-in-law said, now he's profoundly deaf, so we all need to take ASL, which...okay, but then he got his cochlear implant and became oral and we lost all the ASL. It's like learning Chinese here and staying here. Not moving to China, you know?

So...that was, that was kind of the thing with us, we had our decision made because...we're oral, you know? And...but we would have had to choose ASL. He reaches out from his blanket in the morning and goes...no, I don't want to wake up. That was a weird decision, medical provider and --

>> We met last year, didn't we? Good to see you again. Yeah...every year, we meet every year. You raise two really good points. The first being that you actually felt, in your family, like this is what you needed to do. I think part of that is

because you actually did recognize that there were opportunities to choose from and that your family guided those. That's kind of what we're getting at. It's not so much that, the bilingualism thing, I don't want that to throw anybody. This is not the everybody has to be bilingual talk. This is the, everybody needs to know what's out there talk. They can make the right choice for their family. Sounds like you made the right choice for your children and they were two different choices. The second point, that needs shifted over time and that's fine. And kids, I mean, I think from, I think I speak for my colleague here, I know I speak for myself and probably several other providers in the room. It's wonderful from a developmental perspective when we see a child who's been given multiple language opportunities organically make the shift themselves as they develop. They're using what they need in the moment and sometimes it's "I stay with several languages." Sometimes it's "I used to be geared toward one and it's changed toward another." I'm pretty crappy at predicting that stuff, doing the crystal ball thing.

I think your situation is more of what we want to see. At least you were aware there are several ways to approach this and you didn't feel like there was some blanket, one-answer that had to be applied to your kids and when that need shifted over time, you shifted with your child. That's what we're really shooting for. I appreciate your comments.

I think...we also want to make sure we leave some time at the end for discussion. Don't we always say that? I hope we'll do it. So...I think we're going to keep moving, but this is the richness that we love in workshops like this. We don't need to bark at you for an hour. That's kind of dumb. Thank you all for your comments, I think they're perfect.

>> Hopefully this won't eat into time for discussion, but I wanted to ask because of what the comment said. Speech Language Pathologists who know a little bit of sign. Awesome. Audiologists who know a little bit of sign, awesome.

I'm going to push this, I want planning, but...if you're an SLP or as I like to say, SLT. That's not a pathologist, but the way I like to write my notes. If you're a speech language therapist, raise your hand. Three? Okay...how many of you know sign? Three. Okay...awesome. And I assume that's self-directed? Is that self-directed or is that in your curriculum? Curriculum? Okay. That's my ability to look through it. I can see all the way back there. Okay...

Okay...how about audiologists? So...keep them up.>> I know you people in the back who -- yeah.

[laughter]

>> How many of you know sign? Okay...so most of you, most of the young ones, that's fantastic. Somebody from each want to stand up and talk about why you know sign language?

>> I'm not an audiologist yet, I know sign because both my parents are deaf. ASL is their primary language. I grew up learning it and now I'm excited to use it in my future profession.[applause]

>> Who wants to go after that, right? Who wants the mic? If somebody doesn't mind, this was part of my learning. Part of my curriculum. I was surprised that a number of people said "this was part of the training." Can anybody -- does anybody want to speak to that?

>> My undergrad degree is in Deaf Education. I did the sign language thing. I know how to use cued speech and...auditory, oral, auditory verbal, I have it kind of figured out.

>> I haven't figured any of this out.>> Just one more, I love parents, but how many of you are

parents? How many of you know sign language? Okay...so, it's about half of you, maybe? Maybe 40% of you dropped your hand. So...I just want to emphasize that. 60% of you know sign, awesome. The glass is half full, but I just noticed this discrepancy that there's professionals who are starting to acquire the skills because they're part of curriculum but somehow it's not getting to the parent. I just want to acknowledge that. Even in this room with a passionate group, there's a little bit of discrepancy between the professionals and the parent. Okay? I don't have an answer why. I think that -- it goes to the meat of the complexity of what we're talking about.

>> I also think it's worth mentioning, I think it's a really excellent illustrative point that Rob raises. It's not, in any way shape or form to say the 40% of you who don't sign are somehow lacking something or deficient. A lot of that is about making choice and that's what we're talking about here. Informed choice. So, that was not meant to be evocative of having feels about any of that, it's really, I think part of this is seeing where we are, we do this kind of check in every couple years and see how are the things shifting or staying the same. That's very valuable to us. I just wanted to really emphasize that. This is not about how many, raise their hand, yay, we all sign, that's not the point. The point is to see what is translating from the professional realm into the parent realm.

>> We play off each other, you can see that? She cleans up after me.

>> He's really difficult to work with, I'm just saying. Really challenging.[laughter]

>> Hi, I'm a deaf mentor here in Georgia and I'm deaf. My husband works -- he uses a cochlear implant. Now, we were visiting a family and encouraging them sign language and other possibilities. They could speak and it was very awkward at first. One family was thinking about, if they wanted to do a cochlear implant, that's fine. Why not? Their baby is still deaf at night, even without the cochlear implant on and the parents were thinking, oh...that's true. That realization, that amount of information that the family got, they thought by getting the cochlear, it had fixed it and the world was going to be hearing again. But they didn't even get information about what happens if they're not wearing the implant, let's say at night when they're in bed. I think that's -- I honor the speech and oral approach, that's fine, development and listening skills, but sign can be for emergency use and evening use when you don't have your cochlear implant on. That's one of the approaches we take.

>> Thank you, I think you illustrate what we could have a whole another workshop on. The identity piece that goes around with this. It's not the focus of this particular workshop, but I think it's a very natural connection to what we're talking about and it's critical and so...thank you for bringing that up. I think it's really important that we think about those things.

>> Can everybody see this? I see head nodding, I'm sensing you understand this. Okay...oral Schools for the Deaf used to have kids sit on their hands. And slap their hands with rulers if they did signing. They didn't grow up in a School for the Deaf, part of the deaf community and culture, that's part of our culture that we experienced that. And we are trying to get away from that. So...every time any entity kind of reminds us of that experience, the eugenics and others, negative experiences of deafness in our country, not in my lifetime, but in the history of our community. That helped. We're not just talking about ASL. Okay? As opposed to LSL, that was the previous slide, okay? We're not just talking about one or the other, okay? We're talking more about the deaf experience and the language as a conduit for the identity of the person with the diagnosis. Okay?

>> I'm just going to go back to Rob's slide for a second. Except I'm going forward. As a pediatrician, but also as a person, I struggle terribly with this. I struggle with it, I struggle with it personally and emotionally and all those things are important, but I really struggle with this linguistically.

When we have families who come to this country who are not native English speakers and they are speaking whatever the L1 language is in their home, and they have children who grow up in America and English-speaking school systems. I'm talking about

all kids at this point. At some point, the child very quickly gains English fluency and often the family does as well. And when we have a family who gains enough English fluency over time, how many of you would sit down with that family and say "now that your English is good enough, you really do not need to speak Spanish in your home anymore and you certainly don't need to speak it with your child." Who's done that? No one at all. I haven't either. That seems kind of odd.

But...when we're talking about infants who can't immediately access listening and spoken language, but can access visual language, there's this funky no, no, no thing. Milk comes out at six months, they're so much less-frustrated. Why does this only apply to the children who are hearing but something about, you have the deaf child, that becomes a problem. It never made sense to me, if you haven't figured out by now, this is a little bit of a provocative workshop. It's provocative for Rob and I too. My other hat, I'm an interpreter and I actually always talk with our interpreting team before we do this. They are not invisible and they are not here as conduits of information. They are human beings in the room. I let them know, I said, I have a slide coming up that's very emotionally provocative for me. I'm working on two hours of sleep. You're going to see some stuff that I want you to be ready. We're just provoking the conversation. This is hard for me. I think it's really important as providers who are the specialists and people look to us for guidance. This is difficult for me.

Moving to this bilingualism thing...again, this isn't about choosing one or the other. And this is not about having to choose both. This is about the opportunity for a family to know that these are both opportunities or that there are multiple opportunities for language development so that they can have an informed choice about what works for them over time. I picked a few things I thought were interesting. There's a lot more. When you look at bilingualism in general, interesting stuff comes out of the data. You see increased executive functioning across the life span. It actually, being exposed to more than one language, developmentally, changes the way we cognitively process information as people. There are some studies to show that increases our conceptual understanding of things.

I love the Fan study. Increased accuracy of interpreting intended meaning. There's this better skill at interpreting what people are trying to convey to you, maybe not with vocabulary. It's kind of a positive form of stress early on in development. This brain that is trying to incorporate really different

information coming from different sources. That's that promotes a different kind of brain development in human beings.

I like the potential mitigation of cognitive decline in old age. I got two languages under my belt. Apparently I'll be great until I'm like 85. I think I'll have some other problems, but this is, this makes me feel good. That exposure to multiple languages.

So...this is the kind of meat we all came for. Spoken and sign language data. I talk about this stuff with families. We're not here to throw anybody under the bus. This isn't about the bad speech pathologist, bad pediatrician or audiologists, we hear enough of that crap. I go to the data, I go with my experience. I've been doing this for 17 years. That's important. But...I always go to the data. The data continues to grow and we continue to learn more about particularly children whose initial input into language is visual and then looking at spoken language outcome. That's what we're talking about in kids who get cochlear implants.

Anyone in the process of waiting for amplification, potentially is in this scenario. And sometimes we hear things like well, you know, if you start using a visual-based communication system, they're going to rely on that and not embrace the audio input when it comes. That's from a very well-intentioned place. I think that initially that kind of makes some sense. Okay...so let's look at the data because we have data now. How many of you are familiar with our friend Christine Yosinaga-Itano? Can I talk about her behind her back? I'm so fortunate to sit on joint committee for infant hearing with her. She is, she is a true data pioneer in this area and I lean heavily -- I've been leaning on her work for a long time. As I know a lot of you are.

But you know, her, her early data is the stuff that is my favorite in a sense that she did a lot of very robust studies with lots of kids, lots, big Ns, big numbers and if you identify children, we know early identification is important and provides services, services meaning and including access to language. Before six months of age, your result is improved language outcome regardless of mode. She was very clear in her data about that. It did not matter, when you controlled for mode, visual, signed, I almost want to say smoke signal, but I know that wasn't in there. It, it, that was irrelevant. If you had access to language, it's the whole language is language and language to a developing brain is language to a developing brain.

The thing that keeps Rob and I up in the night is lack of access to language in a developing brain. And Rob will talk more about that.

Rachel Mayberry, are you guys familiar with journal impact, you want to see general impact factors that are greater than one. That means somebody else cited the paper. Nature's journal impact factor, the last time I looked was like 47. It's astronomical. You know AAP puts out a journal called Pediatrics. It has a journal impact factor of five. Which is really good. Nature is like off the chain in terms of the rigor of this. So, Rachel, Dr. Mayberry got a good one in there. But all her studies were with kids you're looking at visual language, spoken language, the order of them and she saw that the meat of what she was studying was that early introduction of a first language significantly improved development of the second language. Regardless of mode. It didn't matter which came first, chicken or egg, it's that you needed the early input to get the brain primed for language learning and the longer the brain is without language, the longer the brain is without language and at some point, that ship sailed. That was a really big one in 2002.

I like that we're seeing more cochlear implant studies, I think that's what everybody's looking for now in terms of the advancements of technology. These are small studies, the journal impact factors range. There's, they're all over the place. But...they're, they're necessarily small studies because we're looking at deaf parents who have chosen to get a cochlear implant for their deaf child and the native language and the first language of the home is sign and then we are measuring spoken language outcomes. This isn't a huge population, but a growing one.

So, now we have, the last time I gave a talk like this, I had Hassanzadeh. Introducing visual language doesn't impede the development of spoken language. I'm not going to make any comments about whether it's good for it or neutral, because all that stuff is still coming out. Some studies say there's no difference, some studies say it actually facilitates spoken language. I'm not here to say which one is "righter." None of them found a detrimental effect in these homes where visual language is the primary language. These kids spoken language outcomes with their cochlear implants were not delayed compared with their hearing peers.

It's very seductive to think they would be. Well... there's not a spoken language all around. If you have a family interested in a CI, they're not putting it in and hoping it's going to work. They're putting it in and giving their kid access

to listening and spoken language therapy. That's how it works for everybody. The presence of the moving of the hands doesn't get in the way of this process and that's the data talking. That is not me and that is not Rob. That's the data.

So, I think that's always very important for me when I'm talking with families. There's this concern and it's very real, it's an older concern, that when you're talking about the auditory cortex. I'm not a big researcher in auditory cortex. I know we have a couple physiologic audiologists in the audience that could go to town on this. There's a concern, understandably that if you provide competing visual stimulation, that kind of takes up room in the auditory cortex, that would be given to listening and spoken language input. That, there was a really big study in neuroscience, Frontiers of Neuroscience which has a nice journal impact factor, like two or three. They showed that's not what's happening. It was suggested in animal models. I think people ran with it, but it's not been born out in reality. And in this article, they make a point of saying the best guarantee of good language outcome after a cochlear implant is the establishment of a secure first language before the implant, however that was achieved.

So, there's a real, there's a real common theme here. Laura Ann Pettito was a huge researcher was the VL2 Center. Her work is all about functional and infrared MRIs. Looking at how the brain processes information visually versus temporally. And what she has found is that regardless of how it comes in, and those pathways are not exactly the same. They have a common train station in the superior temporal gyrus. All these things are heading towards the same place. And...I think, I'm really glad that Chris mentioned this whole, you have to pick once a week and get moving. We don't want to delay a decision.

My concern, I'm so glad you talked about that, my concern is that you pick one and if it works for your kid, awesome. And you totally lucked out, but what if it doesn't? And we keep jamming the square peg in the round hole. Now we're getting really functional language delay. You want to talk about we're not doing anything, we're not doing anything. It's making sure people know there are multiple opportunities and those can shift over time.

So, I think...and maybe I'm completely alone on this one...in my talking with folks over the years and having kind of discussions about this, I think there's an inherent misunderstanding by providers in lots of areas about what sign language is. Which leads to very well-intentioned advice about

this whole pick this one way and do this one way and we've gotta do it this one way. Because the other thing isn't an option.

Excuse me. This is my -- I shouldn't play poker. This is the, I'm about to talk about stuff that's really emotionally charged for myself so I'm going to hydrate. We are a full disclosure workshop here.

I took this from a Plenary that was given here, a couple years ago, I'm sure many of you attended it. It's...it's a really good example. Again, I'm not here to throw anybody under the bus. I'm here to talk about what's being put out in the community by people who are specialists and are viewed as experts in the field. We have to talk about the info.

There was a comparison in this Plenary about the richness of language and very true, how important that is in the early developing brain. So, this slide went up. And it was talking about this, this idea of language richness and it was measuring numbers of words in spoken language compared with sign.

So...basically the comparison was in the second edition of the Oxford English Dictionary there, were full entries for 170,000 + words. Comparatively, the Random House Unabridged Sign Language Dictionary identified roughly 5600 signs. I love that we keep this stuff. This is from the script. I know you can all read, but I have to say it for me. And now CART.

So the Oxford Dictionary shows about 171,476 English words. No one knows all of those. We do know if a child is to have a good opportunity for Postsecondary Education, they ought to be familiar with about 100,000 words. An unabridged sign language dictionary identifies 5,600 signs. That's an understatement, because there are a lot of subtleties that can be added to that, but there's a great deal of fingerspelling that has to go on.

Okay...I'm going to tell you my heart's going like 200 miles an hour trying to read this to you and not like have stuff. And the reason that I react so strongly to this is that this is a classic example of taking data and doing stuff with it to make it support what you're talking about. This assessment is taking a low context measure of language, so, are we all familiar with high context and low context? Basically low context language is language that builds words and vocabulary in complexity to express meaning. So it's all kind of vocabulary expressive, high context languages use a lot more intent, body language, shift, implied, it's, it's just how they function. So you know, the classic, the classic example other than sign language is initially, some of the Native-American languages that incorporated spoken language, but there was a lot of other stuff

that was very visual that brought different meaning to what was being said. That's a high context language. English is one of the low context language poster children which is we start talking about something and talk about it more and more and it gets richer and we add all this stuff. As the words get bigger and we talk more about it, the thing takes shape. This is how we do. It's not that one's better than the other, they're just different. When you take a low-context measure of language richness which is words count and you apply it to a high context language, you get this. It's just not an accurate way of looking at stuff.

So...here's my really charged slide. This is my, love you guys, it's coming slide. I'm going to give you an example. I'm going to try to stay with the mic, so I'm going to be back here a little bit. It'll be a little awkward.

The best comment I ever got, and I use my colleagues words to me, not because I want to make them feel bad, it's because...they're so rich with what we need to talk about, they're really good examples. I had a colleague in speech pathology, speech therapy, who I work with a lot and is wonderful and a great collaborator and really broad. I was surprised when she said this. She said, we're talking about all this data and language richness and she said, in English, we have words like, and I'm going to ask the interpreter to fingerspell these. Yacht, row boat, kayak, motor boat, but there's really only one sign for boat. And part of me died a little bit. What I recognized in that moment, from the you are the provider, you are the expert perspective, she didn't understand how ASL works and was still giving people advice about it.

So...I'm going to -- let's talk about this boat thing. The way we work in ASL for those who are not in the hand thing. Like I'm not even forming words at this point. Maybe I didn't hydrate enough. When we talked about stuff in ASL, we have this thing called topic comment. It's a visual language and it's in space. And so, we place something in space and then we talk about it. In English, we talk about something and it emerges as we're talking about it. In English, we talk about stuff that's not there all the time and we give this back story and we talk about the thing and everything applies to it. We don't do that in ASL. If we talk about something and we haven't put it in space, we all look like we don't know what we're talking about.

So, boat. And I'm going to do this for the folks, if you're an ASL user, maybe hold and don't throw that out. There I want people to think about this. So...when we talk about kinds of boats, I'm going to show a kind of boat we talk about in ASL.

The first sign I'm going to use...is boat. Because...we have one sign for boat. Okay, here we go. Tell me if this, at all, looks like a boat that you know. Because...again, we only have one sign for boat. What is it? [laughter]

>> That would have been really embarrassing if people were like "I don't know what that boat is." We do this all the time. We have a boat, it's long and skinny and a person sits in it and goes like this...it's a kayak. We have a boat, a person sits in it and rows, and the boat moves backwards, it's a row boat. We have a boat and it's big and it's fancy and rich people stand around on it and get drunk and throw their money around, it's a yacht.[laughter]

>> That's how the language works. Yeah...that's why we only have 5,600 signs in the dictionary. Because...when you look up boat...it looks like this. And then we add all the stuff to make it a yacht a boat, a kayak, blah blah blah. That's how we work. When you make this distinction with this word count thing, you're using spoken English to measure American Sign Language. It just doesn't work.

Okay, I got past the really yucky stuff for me. Thank you for entertaining me. This stuff is hard. When you're viewed as the professional, it's really important to have humility about what you don't know and punt to other people. That's why we have audiologists and speech therapists. I'm not going to pretend I can do those things. We all need each other. If you're going to counsel somebody about not doing something and you've got bad data, you're not doing your job well. Another one I like to talk about is finish. So...again, there's this sign...if you look it up in the 5,600 word dictionary and you look up finish, this is what you will see. Yeah...see, I'm getting there dude, give me a minute. Rob's like no, it's different depending on how you do it. I know, it's a talk. Love him. He's a very difficult man to work with.[laughter]

>> So...what we do with this sign if we change the placement, the orientation, the motion of the nonmanual marker that appears on our face, the meaning changes completely. Oh good Lord, thank you. So...all done, finished. Yay! Awesome, applause. Same sign. It's up here, it's bigger. I have a manual marker with it. Enough. You're done. Stop. Did you go to the store? Already did it. It's the language. It is beyond rich, it's just rich in a high context and not a low context way. So the West Greenlandic Inuits have around five different words for ice depending on its character. We only have one word for ice in English. Should we abandon it and adopt West Greenlandic

Inuit? No. Thank you for riding with me on that one. It was big.

We did a really crummy job leaving time at the end, but you guys have been participatory, so that's lovely too.

>> One thing that we do, so...you can look at the citation, you can read about language deprivation, so...sorry...I'm just going to sign if that's okay. I can do this, I can do this. So...[laughter]

>> So, what we've shown you, okay? Is with boat, there's a lot of things you can add to make it more colorful to describe what kind of boat. Okay? So, that's using one sign and adding things to describe what kind of boat. Then...you have and signals that use, hand forms that use facial and body positioning to be able to emphasize what this is. Okay? That changes the meaning of the same word.

With language, language, deprivation, okay? We changed that sign to be clear about what we mean. And now...what tends to be used is language deprivation. That means that it was either taken away or ripped away or emphasizing a severe process that this person experienced. And not a good way, okay? Because there are catastrophic developmental consequences.

That are referred to as a developmental emergency by the academy, okay? I can SIMCOM too, because I taught at NTID. That's the only reason I'm allowed to do that.[laughter]

>> He's in the back of the room if you want to talk to him afterwards. Basically, we have five minutes, okay...this is basically, you want to stand up so they can see you. I'm not going through this in this time, I want you guys to make comments, but this is basically what what I was just describing. Really severe, severe...developmental emergency consequences of not providing language in a timely manner. Okay? And for a deaf child who is waiting for amplification, hearing aid or cochlear implant surgery, they're just, they're not being exposed to formal language during that time, again, as a developmental pediatrician, scares me. Okay? We're trying to emphasize that. This is not my slide.[laughter]

>> You like that? Not my slide. No...did you know you were coming to a birds and bees talk? So...we have five minutes left, I know there's a ton of really rich discussion that is not going to take place in five minutes. Robert and I have a couple real-life scenarios that I think drives this point home. But...I think it's reasonable to just check in with the audience, we're

flexible. We have really fun stories to share with you, we're happy to do it. Everyone's like, yes, you have to talk about the uterus. And then I always look like, how are you going to do that, sorry, sorry you lost the lottery on this one.

So...and again, this is a story from a -- [laughter]

>> Go ahead, just get it out. Yeah...normally I'm doing this like I'm the last person on Tuesday and everyone's really punchy by then, so this gets really crazy. So...this is another interaction I had with a professional, again, somebody who I collaborate with, who is really bright, who is great in her field and...very well-intentioned. She says to me, here's what I'm worried about when I'm talking with a family about what language they're going to choose to use with their child. Right away, the hackles go up because what is a singular concept? I'm already like and I've been talking for an hour and a half about bilingualism and you're going "it's gotta be one." But...okay, let me hear it.

You have a mom who has a daughter and...you know, we're figuring out what we're going to do and you know, at some point, that little girl is going to hit those puberty, I see people already going "oh God, where is this going?" That little girl will hit those puberty years and she's going to get her period and if you've decided that you're going to use visual language, and you, as the parent, are learning it as a second or a third language as an adult, and you're not going to be fluent, to talk about something this abstract...you're going to have to pull somebody else in to that very private conversation. An interpreter, a teacher, someone from their school and that's going to have to happened second-hand. You're not going to be able to have that fluency to talk about the fact that you're going to have a period every month. I had all sorts of reaction to this. Wow, you are selling your parent short. You don't know what they're capable of.

But that aside, my response was, I'd like for anybody to be able to have that conversation with that child at all. Because...for what Rob was just emphasizing, if you don't provide any intact language, in those early developmental years, and I see it in my clinic all the time and I clean it up all the time. This is a little selfish. All the kids who failed whatever pathway they were put on, they hit 13 or 14 and suddenly there's blood and they don't have enough abstract language development to have this talk in English, Spanish, sign, pantomime. It's not going to happen. They're going to freak out because no one can

have that conversation with them because they didn't have a foundational language to build on. That's my terror.

So...and again, it gets back to why does it have to be one? Why does it have to be if you pick sign, it's all sine, sign, sign, sign, sign. And that's it, thank you, Brenda. Love you.

Why does it have to be one? This is not a, this is not a let's all sign talk. Let's make sure that families understand that there are multiple ways to cram language in early when it counts so that when there's blood at age 13, somebody will be able to have this talk with this child. I don't know who it's going to be, that's not my decision, I don't want to be there when they decide, that's for them to decide, somebody will be able to have this talk in a language. That's my response to this. Bet you were hoping for something a little more graphic. But that's all I got.

>> That's my slide. Okay, so the intersection, okay, one minute, you guys can stay or go. I don't know if anybody has the room afterwards, but seems like we have a good crowd, so we'll keep going.

>> We'll hijack the room.>> So, we're here until tomorrow too, so...but, we go to bed

about 10:00 tonight so...so...I'm a developmental pediatrician and my passion is the intersection between deafness, autism, and language deprivation. Okay? I missed a session right next door which was touching on this, but that's because of scheduling. So...when you have a child who is not speaking, who is not interacting, who is socially awkward and might have a behavior problem, what's going on with that child? That's my job? And that's what I've becoming really good at doing. And the reason is because, not because I have a whole lot of experience, I have a few gray hairs, but people have more experience at this than I do. It's amazing when going through my training is that all of these patients [indiscernible]. Even people in the practice for 25 years are still stumped by this. The reason is because language, this emphasizes the severity of language deprivation. The child with hearing loss, who has no language, acts like a child with autism. They have no language. They get scared, nobody's communicating with them in a way they can understand. That is autism. They get the diagnosis, they get the services, maybe somebody will do an audiogram on them. Maybe somebody would even do a cochlear implant and later find out they have normal hearing, which has happened. If you want to talk about that, I'd be happy to talk about it at another time.

So...what do you do? Have you ever tried to teach a child with autism sign language? Some people have. It's not easy.

There was a wonderful presentation from Boston about two years ago where they started talking to me about how to do that. A version of struggling with autism [indiscernible], we're making break-throughs. That's something I want to leave you with. Research that we now have, that's starting to enlighten us. For the researchers in the room and those who do literature studies to support your work, refer and do good research. Not research that will prove your point. That's unethical, that's bias. Okay? So...people came to me from, to Rochester, New York from Puerto Rico. The child was basically born deaf but put in a school for children with autism and he tried to jump out the second story window, so he was put in a psych ward and got no language. At 14, his mother finally flew him to Rochester so he could come to a School for the Deaf. He was provided sign language services and a 14-year-old now with 3-year-old sign language skills, okay? But he's making progress.

So...as a developmental pediatrician, that he was in my PCP clinic. He got more bang for his buck. So...what do I do with him? Do I take the autism diagnosis off? Because he's making progress with his language? No...then he doesn't get his services. All right? So these are all diagnostic dilemmas and emphasizing the importance of language and the importance of monitoring language and also, the importance of not waiting. Okay?

I just want to emphasize that. Yes, it's hard for parents who use their hands to communicate, except for getting a free pass at this. So...that, that, you can learn enough sign language, okay? Just, this is a little different than the case I worked at, more appropriate to this, okay? I'm going to take it off here. It's distracting.

You can see I get wired up about this. I'm supposed to be a professional, but this kills my personal spirit. That I'm supposed to leave at the door as a medical provider. Okay? When I get a 7-year-old who comes to me from a city three hours away with good services, because that child has been fitted with hearing aids, fit we did a cochlear implant, given lots of speech therapy, but for some reason, a child isn't acquiring language, okay? So...I have to start thinking about intellectual disability, but when the parents tell me oh...we're teaching him sign language, and then I say, tell me more, how are you teaching him? We open a book, we sign it to him and we close the book. I'm like...that's not how you teach a child language. Okay? You can't just expect the child to know it because they're deaf. Okay?

So...those skills have to be developed. We acknowledge that and that takes time. The earlier the start, the better you'll be, the better your child will be, okay? So we are really advocating, today, to at least consider using all language opportunities in your child's language profile. That's the way I like to say that. It's not a choice, it's a profile. Think of shades of gray, not black and white, okay?

>> Like 50 of them.[laughter]

>> Okay, we're done.[laughter]

[applause]>> Thank you, thank you for staying, like...this was such a

great audience. We're going to hang around -- I don't know if this room is needed -- I don't know if -- okay, so we're going to go out in the hall. We'll be around for a little bit so...you know, if you have burning questions...feel free to come. Thank you so much for coming.

[Session concluded at 3:07 p.m. ET].

"This text is being provided in a rough draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings."