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ROUGH EDITED COPY

EHDI

2017 EHDI ANNUAL MEETING

PLENARY IIIEXPERIENCE OF A DEAF PEDIATRICIAN WORKING WITH FAMILIES

IN A DEAF MEDICAL HOME AND

PRESENTATION OF POSTER AND WEBSITE AWARDS

FEBRUARY 28, 20178:00 – 9:20 A.M.

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>> Good morning. We're going do start in a few seconds. If everyone could come in and take their seats, that would be great. Thank you! Good morning again. My name is Sadie Silcott, I am with the health resources and services administration. I would like to welcome you again to the EHDI meeting. We hope that you have enjoyed the meeting thus far.We have a few announcements and housekeeping items before we get started.For those who are checking out today, luggage storage will be available. Bring your luggage to room Regency 6 on this floor.At the end of this plenary session, we will announce the Poster Awards and the EHDI

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Website Award for 2017. We ask the winners to stay for a Few minutes so we can be sure to take your picture.A blue ribbon will be place on the awarded posters. You are encouraged to check out these and all of the fantastic posters in the Exhibit Hall. That's right next door. While lunch will not be providedtoday, there is a food court connected to the Hyatt Regency. Also, the Market in the hotel will have items available for purchase. The Hotel restaurants will also have options for lunch. So if you have time, feel free To try the available selections.This meeting would not be possible without the support of many people, including:Our outstanding audiovisual service company, Alliant Event Services.The phenomenal CART writers and ASL interpreters through Alternative Communication Services.The local volunteers who are serving as room moderatorsAnd the Utah State University's inn and conferenceCenter for organizing this meeting with great care and skill. Finally, on behalf of the meeting co-organizers, I'd like to recognize and thank the 2017 Planning Committee and staff for their dedication to making this meeting a success. Please hold your applause. Until I'm finished at the end of the names.Will the following people please stand:

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Treeby Brown, Joy Brisighella, Jamie Cousins, Kirsten Coverstone, Kelly Dundon, Michelle Esquivel, Steven Florio, Marcia Fort, Gayla Guingnard, Linda Hazard, Tawny Holmes, Thomas Horejes, Vicki Hunting, Casey Judd, Ben Kaufman, Michelle Koplitz, Sean Maiwald, Mandy McClellan, Mary Ellen Nevins, Robert Nutt, Tammy O'Hollearn, Terri Patterson, Sandi Ring, Sharon Ringwalt, Tony Ronco, Christina Turgel, Allison Ward,Karl White. Thank you all for a job well done. [Applause]And now, I am going to introduce our third plenary speaker of the EHDI meeting, Dr. Robert Nutt. He will present on his experience as a deaf pediatrician working with families in a deaf medical home. University of Rochester division of neurodevelopmental and behavioral pediatrics,Dr. Robert Nutt graduated from Dartmouth College and received his medical degree from the Geisel School of Medicine at Dartmouth. He served on the Newborn Hearing Screening Task Force for the New Hampshire, helping to establish the universal newborn hearing

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screening program in that state. Dr. Nutt completed his pediatric residency training followed by clinical fellowships in academic general pediatrics and developmental and behavioral pediatrics at the University of Rochester Medical Center. Dr. Nutt has cared for families in both a primary pediatrics clinic and a developmental-behavioral pediatrics specialty clinic. He developed an ambulatory pediatric clinic that provides direct care to deaf and hard of hearing patients and families as part of a patient-centered medical home at the University of Rochester. Dr. Nutt has been director of the Deaf Health Pathway at the University of Rochester School of Medicine and Dentistry, teaching medical students about caring for deaf patients and other special populations. He serves on the Monroe County, Task force ofChildhood Hearing and is a member of the American Academy of Pediatrics Leadership Team For early detection and intervention.His lifelong personal experience with hearing loss and proficiency in spoken English and American Sign Language allow him to appreciate the importance of early childhood language acquisition.Please join me in giving Dr. Robert Nutt a very warm EHDI welcome. [Applause]>> Dr. Robert Nutt: Thank you, Sadie, for that wonderful introduction.

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A young boy sat in the middle of the floor in his bedroom surrounded by four pale white walls that towered over his smallfigure. On the walls hung several paintings that he had doneduring his free time at school while his classmates and teachers sang along to the record player. He loved musicbecause everyone always looked cheerful during music time, but he preferred painting. A splendid array of stuffed animals stretched across the head of his bed, adding color as if to compensate for the pale White walls.Over the headboard, a dim light illuminated his kaleidoscope of these colorful friends as they watched the boy play quietly on his bedroom floor. He alwaysseemed to understand what they were saying even though they never spoke back to him. Perhaps it was because the words were notwhat mattered in his expansive, colorful imagination. His imagination made up for their silence.With his hands he built a miniature log cabin and imagined that he was the strong yet gentle father from the books his mother read to him as he fell asleep each night.

From two windows came the sunset's soft, rosy-purple glow that came in and surrounded the boy's small figure as if it were a barrier between the imaginative world and the meticulously constructed one that went on around him.between the animals and the sun set, he surrounded himself with colors and patterns. It was theway he saw the world, in meticulous detail, anything else was undeserving of his attention.

Suddenly he was pulled out of

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his imaginative world by his mother's voice. "Robbie?" Still on the floor, he turned around Slowly to face her. "Why didn't you come when I --"

His innocent expression stopped her from finishing. She lowered Her voice again and asked, "Robbie? Whydidn't you come when I called you?"

"I didn't know you were calling me, mom. Is dinner ready yet?" He stood up, taking his mom's hand and followed her down the stairs, where dinner was waiting. I was only 4 years old. I don't know if my mother knew it, but that was the day that my deafness became a part of me. I started to put together my apparent stubbornness and constantly ignoring, the tantrums, the habits I had of pulling her chin in my direction when I was talking. She knew. Something was different. That was the day when even though nothing had changed about me, everything was about to change for her and the rest of my family.

A few weeks later at Children's Hospital of Philadelphia, I again got to interact with stuffed animals. They didn't talk back either. But they clapped and spun and made lights go off. That was fun. Because it made me feel good that if I pushed a button, I got to do that. I was right. And that was the day I got my fourth label. I was a boy, I was a brother, my parents named me Robbie. And the doctor said I had a bilateral sensorineural hearing loss. I have carried those labels all the way to this stage, and it is my pleasure to have the opportunity to talk with you all this morning and share my experience growing up with deafness and the insights I have gained from working with deaf and hard of hearing children and their deaf and hearing, hard of hearing, and deaf parents.

Despite having a new baby at home, my parents sprung to action. Parental tenacity. They talked to everyone, the audiologist, the otolaryngologist, the education specialist at the Pennsylvania School for the Deaf, the teachers and speech therapist at the private school where my brother was enrolled already. I know of many parents in this room who are all going through or have been through that. The fact that you're here demonstrates your tenacity, your willingness and everything that I have seen from working with parents it is that that drives the success of our deaf and hard of hearing children.

My parents also experienced emotions like many parents do now when they learn their baby did not pass the hearing screening. It wasn't available then, but we have that now at a very early age.

To parents who can relate to this, I want to acknowledge that you just want a good baby. You just want your baby to be all good. That's natural. That makes us human. When you're in the hospital room, postpartum, fluctuating hormones, trying to breast feed, nursing coming in -- nursing in every hour and a half to two hours and

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waking you up, and the emotions that come when somebody who you don't know says that your baby might not be all good. You have to deal with that, with everything else going on, as well as welcoming a beautiful, new baby into your home.

That sadness that you feel, that grief that you experience is valid. You should know that, and I think everybody respects that. It's what happens after that, after you grieve, after you learn, that's what we're all interested in, and that's why we're here.

So as a boy, I had my own emotions. I was scared, I was angry, I was frustrated. Again, my mother just thought I was never 3 1/2, 4-year-old boy, but that was the day when she realized maybe it's not him. Maybe it's something else.

By the time I was 6 years old, I was wearing hearing aids. That's my family. I'm not advancing the slides very well. OK. That's my mom and my dad. I was born in West Virginia. My dad was in the Navy -- I was born in Portsmouth, Virginia, my dad was in the Navy. The story my mom loved to tell has nothing to do with my hearing loss, because it was much earlier than that, but the doctor brought her back, he brought me back to her, I had big, black eyes. That was the time when they used to put silver nitrate around babies' eyes. She thought something happened to me.

Later when she learned of my hearing status, it wasn't the first time she was scared something might be different.

So by the time I was 6 years old, I was wearing hearing aids all the time, except when I slept, showered and swam. We didn't have all of the flare, all the colors, or the fancy earmolds, all the stuff you have now. But my first audiologist got me to accept my hearing aids by making office visits fun. He made little animals out of the earmold guk left over. I still have a little duck. [Laughter]It's very hard now, so it preserved forever. [Laughter]He also told me that I could scare away the neighborhood bully by putting my hands over my ears, feedback. Scare him away. [Laughter]I tried that. [Laughter]He didn't run away. [Laughter]But he thought it was cool. So he stopped bullying me. Transition to the third grade was challenging as learning became more language based and instruction became more didactic. We were also noticing, well, my parents were, that my hearing level was changing. I got my Telex body aid. I had lots of good books about that. It was also the year that "Gremlins" came out. For those who are old enough to know "Gremlins," that's Gizmo. The furry thing you don't want to get wet. [Laughter]One of the rules for me and my class was to not get Gizmo wet, to not get my auditory trainer wet. Because my classmates noticed that the little pink thing sticking out of my ears looked a lot like this guy. We called him Gizmo.

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So third grade I had Gizmo. In seventh grade we upgraded to Gizmo 2. That was Comtex technology.

I was an easy target for those in class who needed to bully. I don't know if there was any association, but that was around the time I started to have a recurring bad dream. Every few months, I had a dream that to me the at the time was absolutely terrifying. I would wake up like any other morning, take my hearing aids out of the dehumidifier dryers, put them in my ears and turn them on. Silence. I would open the battery door, take it out, make sure I had them in the right way, put them back in. Nothing. I was complete dependents on the functioning of advancing assistive technologies. I had no other way to communicate. This absolutely terrified me.

I eventually shared this with my mom, who, bless her heart, signed up with me to take sign language classes at Pennsylvania School for the Deaf. We went two nights a week for 10 weeks, four classes in a row, back to back. She would pick me up after sports practice. Have dinner in the car for me in a Tupperware container. Go for two hours of sign language class, from 6:00 to 8:00, drive home, and then in a private school I would begin all the homework that they give you, all the papers they give you, all the studying they give you around 9:00. In high school I figured out how to use study hall really well.

So my fourth class was taught by a sign language interpreter. There was disagreement whether or not hearing people should teach sign language classes, even interpreters, but this was a blessing for me, because that interpreter introduced me to the students in the high school downtown. Not only I was I learning sign language for me, and maybe practicing with my mom, who was OK, but I picked it up much faster than she did, necessity is the mother of invention or need.

We went bowling. We signed. I realized that my residual hearing was not the only thing that I had to depend on, and if I ever woke up and my hearing aids weren't working, even if I changed the batteries, that that would be OK. I would still be able to connect with people. I would still be able to connect to the world. And that was OK.

So when I was 4, I developed my diagnosis of my identity. When I was in junior high school I officially joined the deaf community. So I spent kindergarten through 12th grade at chestnut hill academy. I was the only deaf student in the school. I was a tri-varsity athlete. Cross-country, wrestling and crew. I took AP classes in college. I took AP classes my senior year. At CHA they have something called a senior project, the second half of the senior year, you do a senior project. Because I had an affinity with Pennsylvania School for the Deaf and the kids at Lincoln high school, I set up this project at PSD. So I called this going to France. Because after struggling with AP level courses in high school, after struggling with using an assistive listening device, after struggling with note takers and making sure that I understood everything and everything was on me, in the afternoon, around lunchtime, after PE classes were over, I could get in the car, and I realized I could leave my hearing aids in the car. I didn't have to wear the earmolds. I didn't have to listen through a straw, which is what it seemed sometimes. Or breathe through a straw.

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When I got to Pennsylvania School for the Deaf, where the rule is that everybody on campus has to sing, hearing or deaf access, that was my France. It was literally like flying across the Atlantic, fitting into a different world, but somehow I knew the language. I was learning it quickly and assimilating quickly. I was getting to know this part of me that, after 14, 15 years, meeting only one other deaf person, before meeting the kids in Lincoln high school, that that was a country that I could get along with, and I didn't have to struggle so much.

My classmates in school, they were OK. When you're in a school for 14 years, they kind of accept you. New kids came in. The thing that I noticed was that I never had to explain how to communicate to me to the new kids on the block.

So one time I asked a friend of mine why don't I have to do that. How do they know? Are they just good people? [Laughter]We have an admission process for school, but I don't think they test you on how you interact with individuals who are deaf or hard of hearing. And they didn't attend the meeting every year that my mom and I did together eventually to educate the teachers. So what was going on?

I found out that my classmates, who had been with me had been with me since kindergarten, they just taught me how to interact. That's fascinating to me, because if you talk about deaf culture, deaf culture, the horizontal phenomenon, not a vertical phenomenon, because individuals who are deaf or hard of hearing get the sense of comfort and identity from peers, as opposed to from the parents, because there are deaf and hard of hearing children born to hearing parents.

Here we were in an all-hearing school, except for myself, and I was seeing another example of horizontal cultural communication and improvement for my life. They also said that rob could go to any college he wanted. I was 7th out of 40 in my class. My parents never had to push me. I was self-driven. Just because I'm deaf, either I'm overcompensating or just because I'm Rob. Those are two different things. Ultimately, they became. I have trouble separating them now. I'm Rob. This is me. So I applied to Dartmouth College early. I was accepted. There is one other, I moved to Hanover, and there was one other deaf student there. However, she graduated after one year on campus together. I started to feel isolation. I started to feel isolation. I was alone. The academics were fantastic, overwhelming. They overwhelmed every one of my coping mechanisms that I had developed in school, because I went from a class of 40 to a class of 1400. So obviously the classes were bigger, the attention was less, and we had to figure out my accommodations after the school year started. That was before CART. Before CPrint or those new technologies. Eventually, I would have a major in the class who could type pretty fast, sit next to me. That was all we had. I dated one of them. But otherwise -- [Laughter]So Dartmouth was amazing academically. Socially, I was a member of a fraternity, sigma alpha epsilon, the fraternity my dad and brother are in. It was a chance to have a

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group of friends who happened to be on the rowing team with me. That's just what we did.

It was fun because I was in a fraternity where we were together on Wednesday, downstairs, you basically tell stories and have good fun. Really more innocent than you hear about on the news. It's actually a lot of fun, and that's why people enjoy that.

I couldn't have CART in the basement of a fraternity. Dartmouth wouldn't provide that accommodation. So I became the mic. Everybody said you have to speak into the mic. Even after some of them had a few beers, they still remembered to speak into the mic. That was fantastic! That's why I call them my brothers. You can measure by the amount of alcohol consumption and the ability to still maintain your communication ability. [Laughter]I felt isolated and alone. Sophomore year my parents came up. It was a rainy fall day, and my mood definitely matched the weather. And my mom asked me what's up? Very perceptive. She knew. I said, I'm alone. I'm doing OK. We're figuring out the accommodations. I'm making some friends. But it's just not real. There's too much outside of my world and not enough inside. I'm losing myself. I think I might be depressed.

So she said, All right. Do you think you want to go visit Gallaudet? NTID? Is that something you would like to do? Remember, I'm at Dartmouth College, ivy league school. This is where we are. For my mother to actually -- my dad's alma mater. For my mom to offer that was huge. It was cold at that time. We visited Gallaudet, and it was an amazing experience for me. Just because in Lincoln high school I saw people who were signing, who could understand, because by this point I was pretty good at signing. Developing fluency. And developing cultural acceptance.

There were still worry about whether or not I would be accepted, because I grew up oral, I wear hearing aids, I don't sign like everybody else did. So lots improved. I've improved. That's improved, because the culture in the deaf community had become more accepting, and that's something that we, the deaf community, always have to do, which is become more accepting of different members of our community, our signing community and different levels, different people who have different hearing levels and different signing abilities. Because if we want people to accept us, we have to show them that we can accept everybody. OK. All right.

So -- so that was cool. Eventually, I decided, well, it turned out that I would have to take classes not at Gallaudet, but GW or Georgetown. So I would have to be off campus, but be staying at Gallaudet for social reasons, soul enrichment and fulfillment reasons.

I love Dartmouth. I love my friends. I love my fraternity. This is something my dad has a lot of influence over the final decisions that I have. That's what surgeons do, they make final decisions. But they -- I hope you got that joke. [Laughter]Surgery is definitive. It's a final decision.

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But so my dad said that's where I got the story of why did I go to CHA instead of PSD. Again, my parents and I didn't talk about this very much. I'm a sophomore in high school, figuring out how this happened. So he told me that I chose CHA for you because your brother was already there. It would be easier for the family, because education was the most important thing.

Also the status of deaf education at PSD at the time was not on par as what I would get as a student at CHA. That's something else that is an environmental condition that we need to consider improving in order to make schools for the deaf viable options, but educational opportunities have to be the same, independent of the language environment.

So another thing that happened at Dartmouth was the going to events again, this time in Boston. At the time, there was one student at Harvard who was like me. One student at Princeton like me. One student at Brown like me. Some people may know who these are. So one student Ohio Wesleyan. One student at Columbia. So there were about seven of us. And we all got together in Boston. That was fun. Because we're all smart. We're all savvy. We're all stressed. We're all various degrees of signing. So it was fun. There was a mixture of lipreading, of what? Of repeat, repetition, of "What's the sign for?" And eventually, towards the end, everybody was just having no problems with communicating, because that's what the deaf community does. We have very brief moments trying to figure out communication, whether it's a presentation or hanging out at the hotel bar. You figure out communication, then you just go. Not saying that you just go, the communication stops, the ears stop, the deafness stops, and you talk about stuff.

That's something that I think everybody needs to get to as we talk about getting to a point of common ground, is we have to address the hearing level, the language, the access. But eventually, we just have to make sure that the deaf children are growing up in a place where they are themselves and they understand themselves by their name, not by a part of their body or perception that other people have of them.

So Dartmouth -- here I am, my AP biology teacher taught me about the balance of the hearing world and the deaf world, because I had to decide when going to college, do I stay in the deaf world and go to Gallaudet, or do I go to the hearing world? What should I do? So you're talking to your mentor, and she told me, You do really well with one foot in both worlds. So there's a sign, I'll try to do this, but there's a sign, I'll go ahead and do it. The sign is this. Most deaf people know what that means. That means ouch, really. But what it means is -- [Laughter]So if you are on a fence and you do that, it would hurt, right? One foot on either side, but you straddle the fence, that hurts. [Laughter]So -- I guess I like pain. I don't know. [Laughter]So that was her perception of me. But she said you do really well riding the fence. Just what I've done.

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College, another thing came up. This was cool. I majored in religious studies and biochemistry, molecular biology. So what? Two very different things, OK? I see somewhere between science and religion is the truth. I'm just going to give you this plug right now: Somewhere between oralism and manual is the truth. [Applause]That's enough about college. OK? [Laughter]I could go on and on about college. All right. So one thing that I started to feel, and it had to do with what happened sophomore year, it took me some time with a therapist to try to figure this out, but I call this half the man. Some of you may have heard me talk about this last year.

If I divide myself in half, this is my hearing side, and this is my deaf side, my hearing side, so I had a diagnosis, I had hearing aids, they were fitted, adjusted, I knew my audiologist better, she was like my aunt. She was great. I saw her all the time. Every time I had a change in my hearing status, we got steroids, and that's why I'm so short. [Laughter]No, I'm just kidding. So here we are, OK, we're choosing academics instead of PSD. We're choosing -- I'm in a hearing family, and so I'm dealing with all of this stuff. I'm addressing it, I'm overcoming it, doing well, seventh in my class, getting involved in the school, and I'm really successful. Right? I had bad dreams. I'm frustrated. My mom is telling me I'm not going to have any -- my mom is telling me I'm not going to have any friends. Because of my behavior, my stubbornness. Why am I like that? It's because it's hard. So this is my grass half empty. Open though I was successful, even though I was determined, even though I was starting to fight, it hurt. It hurt emotionally. That's something I would emphasize, there's an external world that deaf people, people who are hard of hearing, have to interact with, but there's also an internal world that we have to put up with, that we have to address. And that glass can be half empty. That is a deprived half of a soul, and it hurts.

We need to find ways to help our children, regardless of communication, methodologies, what I say profile, because I prefer it be more than one, but whatever your choices are is the choice you make. But whatever your choices are, that emotional side of that individual has to be addressed, and I started to feel that profoundly, empty. OK?

So going to Boston, taking out my hearing aids on the bus and going to Boston, that started to fill up. Teaching sign language classes to my friends started to fill up. Meeting a girlfriend outside of my fraternity, teaching her the manual alphabet, then dating 3 1/2 years, that started to fill up.

So technology has been a huge thing. Before I do that, I'm going to go back. OK. This is a big thing of mine. I skipped this. So the kit bag. OK? One thing I want you guys to remember is adaptation. Why do we have five senses? Because our ability to adapt with our environment. Not having as much hearing ability as most people in a society that depends on sound, OK? Think about the car. Is it more effective for a car to flash their lights to warn you or honk their horn? Think about that.

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We live in a society that could be visual, but because the sound apparatus in our body is more sensitive to most people, our society, our world is dependent on sound. OK?

So we have our senses for adaptation. In order to adapt, you have to have skills. OK? It's your profile of skills that give

you the ability to adapt to different situations that are prepped for it. I call that your kit bag. That's right here. You carry it everywhere you go.

The reason that I -- the reason why I am a deaf physician is because my kit bag is loaded!

Before I applied to ENT residencies and didn't match, I had never failed to do anything. But that experience, phew, that was difficult. I mean, I felt like I was in the lion's den. OK?

I'll get to that, if I have time. That's a little more emotional, so I'm trying to keep things in ways that I can explain to you clearly. OK.

So sometimes to fill that side that is neglected, to make you feel good about yourself, OK, you go to courts. Since we're in Atlanta, everyone is reminded this is MLK's ground zero, OK, so this is one of my favorite quotes, because it gives me a lot of feel good. This -- deaf is not easy. OK. This is not the NAD conference. This is not the A.G. Bell conference, this is not the otolaryngology conference. This is the EHDI conference. You're starting to feel something different here, it's happening, and that we're finally started to figure out how to raise deaf children, deaf and hard of hearing children. I use deaf generally. So it's hard. It's not easy. I'm proud of everybody for being here, because this is the conversation that we have to have.

In my mind, when I make all my money and retire, maybe even if you guys want to help me do it, it's kind of already happening with common ground, but I had the idea of the deaf child project. And the deaf child project is the next roundtable with all of the stakeholders, everybody. Everybody has a voice. Everybody has equal voice. Everybody is around king Arthur's roundtable.

Baby that is identified as deaf or hard of hearing is put in the middle of the table and we figure out how to raise that baby in our world. OK?

No, no, no more golden providers, where the first person you talk to is the most influential. No more early intervention programs struggling to educate coordinators how to counsel families who have a deaf and hard of hearing child. But people who know about it, make the decisions. We have this for JCIH, we have this for EHDI, and we're getting there. That makes me really, really proud, because this is something obviously with my boulder that I've had to carry my life, through school, through in the crew shower with my hat on so my hearing aids don't get wet, through medical school, the operating room, through working with the engineering school, to develop things for the operating room so that I would be able to pass or even be interested in surgery. This is the conversation that I think about every day.

It's not do I need a cochlear implant. That's not a thought in my mind every day. I have two hearing aids, and I think about this. How do we raise deaf children?

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So medical school. One story with this. This is important. I had not used sign language -- I knew sign. I went to Boston. I once in a while got to hang out with deaf friends. I met up with more deaf friends. When I would go home, that deaf side was just here. It wasn't filled. I come to EHDI, it's up here. But I go down. It's just right here most of the time.

So in third year of medical school, all my classes with CART. OK? Microphones, FMs and not being exposed to the same language, word exposure, terminology my hearing peers were. I had an experience that changed my life. I was in the ICU on my surgery rotation. We were in a group of about seven of us. What I usually did, I gave the microphone to the person who was presenting. The problem was that the microphone, this person talks, I can't hear them, here I am, they're either passing the microphone around to them or I'm not getting everything, I'm hoping that I can figure out what they said by what they said. OK?

There happened to be a deaf patient in the ICU. So we borrowed the interpreter, just for a minute. My whole life changed. I never realized how much I was missing. I didn't have to pass a microphone around. I didn't have to put my burden on somebody else, let alone a surgeon. I could make surgeon jokes because my dad is a surgeon. [Laughter]And I have used interpreters since then. I saw it in Congress, on the congressional floor, they walk around with the stenograph with the thing on them. I was like, I could have done that on rounds! [Laughter]Have goggles with text and other stuff, I could have contacted the engineering school. We could have done that. That's what I did in addition to going to medical school, find a way or make a way. That's been another big quote of mine, is if you can't find a way, then it's up to you to make one. OK?

So since then I've used interpreters, and I don't have to worry about missing things, because I only have to work one place. I only have to look one place. Yes, there are other things I have to worry about. In medical school, in residency. In residency, I called myself Peter Pan. That's easy to do when you're a pediatrician, because you get to make jokes. The reason is because he's trying to get to his shadow, I was trying to get away from mine. But it followed me everywhere. Everybody knew I always had somebody. You could always tell the new nurses, because when I would walk by the door, they would come out. The nurses would bump into my interpreter who was following me. [Laughter]The ones who were savvy knew when I walked by, you could see them wait. You know?

[Laughter]It was fun. We're running low on time, so I want to move forward. I did have the opportunity to teach deaf education at NTID between medical school and residency. So this is a picture of me dissecting bovine eyes as part of the explore your future with high school students. I just want to say, the one thing I noticed from this that I want to share

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with you is that I notice that the kids who are mainstreamed, with hearing aids, cochlear implants, etc., they have fantastic vocabulary. They finish their work on time. They are great. But their creativity and their confidence was lacking. And I think as a developmental pediatrician it's because they had underlying anxiety. And that comes from growing up as a mainstreamed individual, because you're anxious because you're always being vigilant of things you're missing.

The deaf kids, OK, they didn't have as much English language. Not as much written English or, in many of them, didn't use verbal communication. OK? But their creativity was phenomenal. Their willingness to engage, their confidence, the social interaction amongst each other was -- they just got along. The mainstream kids were usually on the end, and I just noticed that. So something for us to consider as we see the experience of older kids and the decisions that we make.

OK. So in the 3 minutes, I want to share this with you. I am a developmental pediatrician. During seven years of training at the University of Rochester I had the opportunity to work with just families that sign. Some of them were interpreters. Willing to come to me. That was more for me, because I sign. So my patients can use that language. But I was able to provide direct clinical communication with deaf parents. And then many hearing parents brought their hearing to me, mostly because I was a role model, but also because I could communicate directly with that child. These are some of them.

The bottom one with me in my white coat, which I don't wear very often, I'm in my white coat because it's Halloween, I'm pretending I'm a resident. [Laughter]So they are twins. This is the fifth generation deaf family. OK? The mother married one man, had two hearing kids, divorced him. Then had -- so had two twins, both deaf, then had a third who is deaf with another, her new husband. These are the younger kids, all deaf. And they sign. They're young. They sign. They communicate. It's a pleasure taking care of them.

OK. So in this kind of clinic you have four possibilities. You have the red is hearing, and the blue is deaf. So you either have a hearing child of a hearing parent, you have a deaf child of hearing parent, which is most deaf kids, you have a deaf parent of a hearing kid, or a deaf of a deaf. OK?

So for the hearing -- I'm going to tell you things I think about when I think about these four groups. Hearing parents of hearing child, what can they do? For us, as EHDI and as what we're trying to figure out, make our society more accepting, inviting.

Celebrate diversity. OK? Maybe even teach them baby signs, because in my view, I will say this up here, as a developmental pediatrician, I believe that all babies should learn sign language. Regardless of the hearing status. [Applause]Decreases frustration in your early age, before the naso muscles are developed, the baby can say mama, with three, four, five signs that reduces frustration. I've seen it in both my hearing boys, and starting to experience receptive language, auditory and teaching visual to my third baby, who I'm very excited to get home to. So the reason for

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this is what? If everybody new sign language -- if everybody knew sign language, everybody would be bilingual. You could talk through glass. If you forget your keys or you forget to say I love you to your wife, you can talk through glass! That's not a deaf thing. That's a cool thing! Right? [Laughter]The other thing, if we start early, and everybody, not only you, reduces infant frustration, but you start to have general acceptance of a community fighting really hard to be respected.

So hearing parents of a deaf or hard of hearing child, that's most of us. OK? Most of you. Maybe me. We're trying to see whether our 2-year-old is stubborn like me. I'm stubborn. So that's most of us. I hope that from hearing me talk this morning that you have a little bit of validation for your experience. You're allowed to grieve. You're allowed to go through those stages. What we need to do is we have to get to acceptance. OK? The sooner we get to acceptance of the whole child, we can focus on the whole child. OK? So grieve, but you really have to have programs, support, therapy, instructional tools to allow parents, caregivers to get to a point where they can accept the whole child. Then the parent will be more ready for understanding the different communication profiles that the child might embrace.

Deaf or hard of hearing parents of hearing children, this is CODA, child of deaf adults. My observation with these kids, this is something that EI does not provide services for these children. They're delayed. Especially if the parents are oral deaf. OK? The reason is because oral deaf parents can't fully hear their children, parents who are bilingual may communicate more effectively in sign, but they've been taught speech. It's not clear. They talk to their hearing child in unclear speech, and the child either develops unclear speech, because that's what they hear all the time, or they develop behavior problems because they're language delayed. They get credit for the words. They get credit for the signs, about you they're delayed. It looks like they have severe ADHD at 3 years old. Real ADHD as a developmental pediatrician, 3-year-old ADHD, because the parents have no control over them. Because their words are no, their words are stop, their words are respect me, their records are that hurts my feelings. They ignore it, because they know their parents won't hear them.

I have fun family that is particularly struggling with this, they don't want to put their kids in preschool. I've heard that from some of you here. That's not an option for them. They can't afford it. The state won't pay for it. They can't afford it without subsidies from the state. So they don't want to put them in preschool. So they take them to the mall, they turn on the TV, that's how they get them exposed. As pediatricians and medical providers that's not a way you acquire quality language.

So deaf of deaf parents. So these are families that grieve. These families, some of them in my practice have grieved when they find out that their child does not pass the hearing screening. Just like the majority of parents who are hearing, they wants their baby to be like them. Yes, they recognize that deaf is not easy, but they want their baby to be like them. So they grieve that process. They're mad. So I have to help them figure out, OK, but if you want your child to go to RSD, you still have to go to follow-up. That's

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something we need to encourage them. It's like why are they so much against the screening? Because they know that their child is deaf. It's genetic. It's been in my family. They're not going to have a problem. They'll learn sign language individually in the environment and have incidental learning from that. They're going to grow and thrive, because they're going to learn sign language. Don't worry. The research shows that.

But they still need to go to follow-up because they need the diagnosis, because they need the diagnosis, because our system needs the diagnosis in order to get them into the School for the Deaf. OK? Follow-up is still very important for these families.

OK. So I think we're out of time. It's been a pleasure talking with you. I'm going to say I'm thankful to EHDI, the MPHP, for the CDC for sponsoring this, bringing us target. I look forward to working together with North Carolina next week when we move there. I'm happy to talk with you, happy to answer questions. Do we have time for questions? No? OK. OK. I'm here. You're welcome to come up and talk to me. My e-mail, or through the app. Thank you very much. It's been a pleasure. [Applause]>> Sadie Silcott: Thank you Dr. Nutt. We really appreciated that presentation. Thank you! Now, I would like to ask Tony Ronco to come to the stage to present the website of the year. For 2017. >> Tony Ronco: Good morning. Where is my clicker? This will be about the website of the year for 2017. The goal here is to make sure that we have like a friendly competition in order to improve not only the information that's disseminated, but also to make it user-friendly and easy to access. So let's get started.

These are past winners. We had Pennsylvania in 2011, Minnesota in 2012, we had a tie in 2013, highly unusual but it was great to see that, North Carolina and Oregon. And in Kansas 2014, Washington 2015, and last year it was Iowa in 2016. That was a brand-new site for them, and it paid off wonderfully for them. So this year, this is what we're going to find out. First, this takes a village to do, all these evaluations in all of the states. If these people are in the audience, can we please have them stand up quickly. We do appreciate their efforts, because they sacrificed not only their time with their family, helped out. So this represents a lot of hours of their time, and I deeply appreciate you helping with this effort. Thank you. For those curious about it, there's three website components. I mentioned them earlier, it's content, design and layout, accessibility. That's making it basically the information to be user-friendly, the website itself to navigate it, being user-friendly, and it being accessible, user-friendly. You kind of hear a theme going on.

If you want to look this up, these are the website checklists. These are the components that are measured. So you can look that up. I want to hurry through it.

Now, there we go. That's the accessibility part. This is this year's finalist. The finalists. So Idaho, Illinois, Nebraska, Hawaii and Louisiana. Just to get to the final round is quite an accomplishment. So they all deserve a hand. [Applause]And the winner is -- uh-oh. We'll have to wait for it. Illinois!

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[Applause]If representatives want to come up, we have a certificate for you. No one? We'll get them later. Oh, there we go! >> Wow! >> Tony Ronco: Congratulations. >> Just thanks to division of specialized care for children for housing it, and huge, huge thanks to Kerry Ballion and the Illinois Guide By Your Side folks, because a lot of the content is because of them. [Applause]>> Sharon Ringwalt: Oh, those lights are bright! So I'm Sharon Ringwalt, and I'm here to announce the winners of the posters, poster different tracks. I first of all want to thank my committee. If you're members of the committee and here, please stand up. They're Marcia Fort, Tommy Jorge, my left-hand man here, Pamela Dawson, Claudia Webber, Winnie Chung, Steve Richardson, and Nancy Sager. So wave your hands, stand up.

I also want to thank the behind-the-scenes folk who make this possible, who really offer support to the committee throughout the year. That's Joy and Nandi, Casey and Karl. So thank you all. To get to the envelopes, and I think I have the right officers. In the right envelope. [Laughter]I can do this. I'm going to hand them to you one at a time. The first category is early intervention, the winner is poster 14, purposeful play for parents and professionals, it was presented by Emily Noss, Ashley Irick and Autumn Sanderson. [Applause]If those folks are here, if you will come down. Tommy will hand you your certificate. If you will stay over there, we'll get a picture of you at the end. The second category is EHDI program enhancement, and the winner is poster number 5, effective answers to the most common questions from nursing staff. That poster was presented by Melissa Richardson and Sandra Davis. [Applause]The third category is follow-up, tracking, and data management. That winner is poster number 3, what can newborn hearing screening data tell us about factors associated with loss to follow-up? That was presented by Hayden Engstrom and Alissa Fosnight.

The fourth category was family perspectives and support. That winner is poster No. 33, factors that influence device selection by parents of pediatric cochlear implant candidates. The stage is beginning to tremble. That poster was presented by Donald Goldberg. [Applause]The fifth category is EHDI workforce issues. The winner is poster number 42, are we there yet? Lessons learned from a hearing loss -- genetics needs assessment. That one was presented by Kunal Sanghavi. [Applause]The next category, category number 6, was program evaluation. The winner there is poster number 45, a new day for EHDI in Georgia: Capturing individualized hearing

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screening data on the newborn screening card and electronic birth certificate. That one was presented by Michael Lo. [Applause]OK. The next category is audiological services. The winner is poster No. 25, are audiologists directly referring children with hearing loss to early intervention? [Applause]That one was presented by Bridget Shanahan, Cailin Shanahan, and Natalie Loyola. >> Thank you so much. >> Sharon Ringwalt: Thank you! OK. The next category is language acquisition and development. The winner is poster number 37, language connection: The joint benefits of preschool inclusion. It was presented by Sarah Bethfly and Lindy Powell. [Applause]The last category is the best student poster, there were 17, 18 students posters this year. All of the posters -- it's a challenging category to judge, because people put so much work into them. And all of the posters. But I'm especially proud of the students. The best student poster they year is poster number 55, improving EHDI in the state of South Dakota: A parent's perspective. It was -- [Applause]Presented by Megan Wegher and Kiersten Meyer. [Applause]Thank you to all of you who presented posters. I know you put a lot of work into it. That's really evident. Thank you to my committee. And thanks to all of the winners. Let's get a picture of them. Thanks! [Applause]>> Sadie Silcott: I have a few reminders before you leave the meeting.Be sure to complete all of your evaluations and turn them in. If you prefer, you can do this right in the meeting app. It's pretty cool!Your input is extremely Important to us.If you complete paper copies of the overall meeting and poster evaluations, be sure to turn them in at the registration desk.We use the evaluationsto make changes to the meeting. So it's very important that we receive them from all of you. Also, if you are applying for continuing education credit forthis meeting, be sure you complete and turn in all of your

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forms before leaving if at all possible.You may have noticed that again this year's EHDI Meeting has just three plenary sessions Since it worked really well last year.Once again, instead of a closing plenary this afternoon, we have more breakout session time and opportunities for you all to attend them.So this makes our last generalsession all together at the meeting. We really appreciate your support in making this year's meeting a fantastic event! As we close our last plenary and wish you another good day at EHDI,We'd like again to thank our -- to thank everyone for being a part of this meeting. This year's meeting has been enriched by your creativity, hard work and obvious preparation. Each year we come together to share what we know, to learn from one another, and to work together to improve EHDI. We've had valuable instructional sessions, stakeholder meetings, networking opportunities, poster sessions and many excellent presentations, to give us new skills, broaden our perspectives, and inspire us to carry on our work with new energy. We hope that you will join us for the 2018 EHDI meeting in Denver, Colorado next year, which will take place on March 18-20. Until then, enjoy the rest of the meeting, and return home reenergized and equipped with new information and connections to make a difference for children and family. Thank you! [Applause]