ROUGHLY EDITED COPY

EHDI - STOPHER‘The Dream Team: The Playbook for Partnership between Parents and

Professionals’Casey Judd

March 9, 20153:20-3:50p ET

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Can you keep writing so that I can, I need to space text on the screen so you can write what I'm saying and I'll try not to talk too fast so you won't have a problem writing what I'm saying. Just messing with you -- just a reminder, you will stay connected all afternoon. Thanks.

[Speaker off mic]. [Captioner is unable to hear the speaker].>> Okay, can you hear me? Okay, thanks, welcome, guys, I'm

going to quickly introduce myself and we're going to talk about parent support. I know that you've probably heard this already or if you've been to other sessions, that's what everybody kind of talks about, the need for parent support and I want this to be interactive. If you have questions or, we're going to talk through things with each other, there's a lot of other people that are more experienced than me in this room today. So, we can all benefit from everybody here. Can you just raise your hand if you, do you have a deaf or hard of hearing child? Okay...great. Let me introduce myself real quick.

My name is Tiffany Savage. I'm from Texas. I work for Hands & Voices. I'm a parent guide for Hands & Voices. I'm also on their board. I have lots of kids. I have five kids and my husband and I have been married for 26 years yesterday. And he's

at home with all of the kids while I'm here, for our anniversary, so, that's been really fun for me. Our oldest two are biological, my younger three are adopted. Two from foster care and our littlest one is from Haiti. She's 4 and she's our deaf one. She's bilaterally implanted. She uses total communication, she speaks and signs, goes to regional day school program there. So, I'm not so seasoned in this part of my life, but...have done support groups for adoption for many, many years. And...just know why parent support is so important and getting the support you need. So everything I talk about is probably something you've already heard, but hopefully I can say something that's going to spur you to do something or make a change or to ask a question and if you have questions, please raise your hand through this and I will answer if I know the answer, if I don't, I'll find somebody in here that does.

This, I thought was really important. And I just have this in my house of what the word support means. All or part of the way of. (?) You can't do it yourself. If you don't have somebody supporting you, lifting you up and carrying you through this, no matter what stage of the journey you're on in this experience, not just deaf and hard of hearing kids, basically in your life, you've gotta have, you have to have a support system around you. And it's so, so vital for your mental health and the health of your family that just remembering the importance of this, I think, is really necessary. Just to know that you're not there by yourself. So, statistics are big, of 24,000 kids in the U.S., here, born with some degree of hearing loss. This statistic is really high of families that are hearing that have deaf children or hard of hearing children, it's in the 90% range. And so, sometimes it's super overwhelming.

My story was, I didn't know that my daughter was deaf until we brought her home and she walks in the door and she's deaf, what do you do? It's overwhelming. It's overwhelming when you have your baby in the hospital and they do that initial screen and say "your child doesn't hear." What do you do? Do you reach out for support? Do you seclude yourself? How do you handle that? It's those steps of connecting to people and finding people, but just knowing that you're here with all these people that have all done it and you're not by yourself, that's probably the biggest step. Kind of to get through.

And I feel like if you don't have a baby or a little one, this stuff is going to be repetitive and you're already going to know

what this looks like from your initial diagnosis, from your newborn hearing screening, to a referral process, to what is your role as a parent or family. This afternoon all changes throughout the life of your child. But, the support that you need never changes. You always need that, you know, I need support to be a mom of a 25-year-old, the same as I needed support of being a 4-year-old. It just looks different.

What's the, what does the referral process look like? I'm probably going to have acronyms or things up here that aren't the same for you in your state, if you don't know what that person is or that acronym is, ask me and I'll explain, I can say ECI. You may just not know what that C is because you only have EI, which I learned like two seconds ago, so, ask me questions about that if you have them.

But I know for, the referral process, sometimes works really, really well. Sometimes it doesn't work really well at all. And...I know we're trying to change that, babies aren't slipping through the cracks, they're getting the services they need, but that doesn't always happen. How do you know you're getting the services you need? Who do you talk to? How do you know who to talk to? All of you are probably familiar with the 1-3-6. If you're not, you can probably find this chart downstairs. This is super helpful to a mom that has no idea what's happening. And...even just like on the EHDI website, there's great, great materials for you to look through, to print out, to go back to and share with your friends and to give these to early intervention coordinators and teachers. When your child starts school, building just the positive relationship with your school district, it's so important. Even if you're, I know, for me, you get this referral and ECI comes into your home, now your child's enrolling in pre-school, but your child's nine months old. Why are they in school? Why do you have to have all of these things? It's just part of the process.

But knowing how, why these people are your support system and kind of what to do for them is welcoming, everybody's now coming into your house, so...what does that look like? What is that -- now you've got ECI people coming in your house and the school district coming into your house, does your house have to be clean? Does your house have to -- what do you have to do to make that work? Well...I learned really early on, I'm not the hospitality director, I'm not in charge of baking them cookies when they come. They don't expect that. Probably don't want

that because they don't know who's been helping you make your cookies and licking the beaters and all that stuff is probably not really sanitary for them, anyway.

But...knowing that, to have them walk alongside you in your life, where you are at the moment. If your four kids have all had the stomach virus all week, but now they're all better and your early intervention, you know, school liaison is in your house and you haven't done laundry in a month, how can she work with you to make laundry something that you know, a learning tool that you're working through. Maybe you sit down on the floor with your little one and you are sorting colors and you're talking through that, while she's also helping you do the laundry. Use what you can use. I mean, I learned how to do that really quickly. We were washing dishes, everybody's going to wash dishes. Let's all do this together. She didn't ever mow our yard, but she did everything else in the house with me.

So, you're enrolling them in pre-school and and do understand why you're doing that, ask for another parent that's gone before you or in this process, ask the school district, can you give me the name of somebody that can help me through this? And they will. Most of the time they will. Why are immunizations important? I don't want to know what you think about immunizations, but they're important in this process. Once you start this, your child has to be immunized, why? Because the school requires it. At eight months, they don't have to have five years of shots, they just have to be current where they are. If you need forms, they're online, you can print them out. You'll be asked for them, be prepared.

What if your parent advisor is giving you advice and you're not a parent? All of your kids teachers aren't parents, everybody that deals with you isn't necessarily a parent. Listen to what they have to say and try to pick up something out of it. They see things from a different lens than you do. A parent advisor may come into your house and they, or a speech therapist or your ECI coordinator, they may be 24 and out of college and this is their first job. And you're thinking, I'm 100 and I have 17 kids and you're going to tell me how to do this with my kid? But...they come from a fresh perspective, they've got something out there that you didn't know, they're trained in this, you're not trained in doing this, that's what they do. They're not trying to tell you how to parent. They're not giving you behavior charts and telling you to go to therapy and -- I mean, they might be, in my

case, maybe for one kid, but not all of them. But listen to what they have to say. A lot of times they get a hard wrap. They hear parents all the time "what do you know about my kid?" My parent advisor got that a lot. How many kids do you have? She didn't have any kids and she wasn't married, but she also went to school to do this, this is her background, let her be your support and your sounding board, don't be mad at her. You should be giving her Starbucks, not telling her what she doesn't know about your kid.

And then the other thing, in the school process, don't apologize for the decisions you make for your child. You are your child's advocate and you, there's no sense in saying "I'm sorry, I'm choosing this...maybe you should help me do this...." Don't apologize. You're the parent. You make the decision. Your decision might change. I'm the crazy parent at the school, we started in one class and moved to another, three months later I didn't like it, we moved to another, whatever, that's what worked for us. We have to figure that out. You're going to go through that a million times through their life. You're just, you're going through it, it's whatever works, at the time, for your child. You don't have, there's no reason to apologize for what your decisions are.

Doctors as your support system. You're making a lot of big choices really early on. Do you need hearing aids? Do you need an AVR? What does that look like? Do you want your kid to be sedated or not sedated, hungry or not hungry? Whatever they're telling you, you need their support, but also, find somebody else that's done it before. And ask them, what did you do? What are my rights? What do I know that I can go in a little bit armed with ammunition. Take somebody with you. Our parent advisor went to our early doctors appointments with us. I couldn't have done it without her. She was my only support and she didn't have kids, she never parented before, but this is what she was trained to do. She asked questions that I would never have asked. I didn't know to ask, and literally, I couldn't have done it. You're starting out, you're in schools, doctors, therapies and you're trying to reconcile my child's deaf. Did I do something wrong? Is this my fault that my child's deaf? How do you put all those pieces together and still stay sane without drinking too much or eating too many cupcakes. There's a cochlear implant comparison chart, that's just free for you all, you can have that, you're welcome. If you're in that process of coming up with how to choose, how do you know which hearing aid's the best?

How do you know what implant to choose? Who's telling you -- for us, our doctor didn't give us very many choices. And...our school district said, you have more choices than that. Research that and learn what, what all is out there, what's available. We ended up not having a choice, this is helpful to many parents. It's interactive and updated all the time. Even if you're not choosing and your kids have been implanted awhile ago, it still shows you what's new and current and changing in that system. And...good things to give to teachers and it's a good resource.

Support of your extended family. This sometimes gets touchy, but not everybody's going to be on your team. Everybody will have an opinion. Everybody has an opinion of the choices you're making. And, that's hard, sometimes, for families to work through. Do you, I mean, do you care what your parents think? I mean...most people probably care what grandma thinks about what choice they're making. Are you choosing to sign? Are you choosing the oral route? What are you choosing and what's the family saying? Are they your best support system? Some families are great support systems and they don't know any different, they just follow what you do and they're right on board with you. Some families are totally not on board.

I would say even within your own family, I can tell you, just personally, my husband struggled greatly through the process of having a deaf child. He just, he thought you know, we started this second family and this was kind of going to be easy and we were going to, you know, we're in a different place than we were the first time we had kids and this was going to be easy and we're bringing her home from this orphanage and it's all going to be great and now she's deaf. He said to me, he was really struggling, working all the time, I didn't know why he was absent and he said, I never wanted a deaf child. Okay...well...I don't know really how I handled that in the moment. I'm not sure I said the right thing at the time, but...he was able to verbalize that was a huge step. And had, how we reconciled that, through me trying to find support for him. Moms are all about it. Look in the room. How many, you know...it's, moms are doing it, moms are there, every day, working through this. Doctors appointments, therapies, figuring this out, dads kind of have a hard time with it. So...we, we're trying to figure out what kind of support can he have? In our area, there wasn't a lot of families for him to connect with that the dads were in the same place he was or the dads were not deaf. And he obviously didn't want to be part of the deaf community, so we went to -- our state

has a family weekend retreat at our School for the Deaf. If your school has that or you have any kind of opportunity to be there, you should be there. That was life changing for our family. He went to family weekend retreat and saw a roomful of other dads that were in his same place. He heard from a speaker who challenged him and showed him that it's okay to be the father of a deaf child. Hearing dad who know has a kid graduating from high school and going to college and they can communicate and he can learn, I mean, you can still learn sign language when you're in your 40s. I mean, you can learn other languages, it is possible. And...he didn't see the need in that, he didn't want to learn to sign, he got to hear from students, which was really big, I think kind of big for both of us, but to hear from students that said, what would you do different? What would you, if your parents could go back and do something different, what would you wish your parents did for you? All of those students said to him, I wish my dad had learned to sign. I wish my dad had tried harder to communicate with me. And that was like...oh, okay, I'm in, let's do this. What do we have to do? Got a deaf baby, let's go. He was all about it. So, support, not just for moms, but for dads and for siblings and I mean, you need support throughout your whole family system.

How to be the best advocate you can be. Moms probably already know that but...you're their only advocate right now. When they're little, until they're out of your house, even when they're out of your house, really, they stay around forever. You cannot sometimes get them to go away. Just...how it is. You're the only one making their decisions, especially when they're really young. You've got to help them do what's right and make those decisions and, and will you regret some of the decisions you made? Yep, you're going to. I mean, you're going to screw up, you just are. Are they going to resent you for that? Probably not. I mean, 50/50 chance they're going to come back and need a lot of therapy. Maybe that's just my kids, I don't know but...yeah, you've got, you have to be their advocate and you have to find them the support they need. So then now, it's not all about you, it's also about them. What kind of support system do they need? Do they need peers? Do they need a mentor? I mean, a 4-year-old could use a mentor of somebody else that's not me, that maybe, like for us, we bring in, I had to search really hard to find sitters that could sign, but can also speak because my other kids are hearing. So, I bring babysitters in that are at a local college and this is what they're going to

school for and they're hearing and they sign and they, and not only are they keeping my kids and they're safe, I pay them really, really well, they, they're teaching my other kids. And...am I getting support from, we do a Shared Reading Program and I don't know if that's something, if anybody's heard about it, we do shared reading programs, which is through our HUD. Lisa, tell me if I'm getting this wrong, it's new.

But we have a book we go through, we do it via Skype and the person that's reading is deaf and she signs and she reads with me and my kids and she only signs, so then she teaches me how to do that with our whole family. So our other kids are also learning this in and it's interactive and she's helping me see, she's building more skills than just learning to sign. She's really a part of teaching concepts out of this book, but now she's also, now I've got a new support person, one more person I add to my tool bag. She's deaf, she signs, she gets it. Not only does she do this, but she's a therapist. She probably doesn't know I'll be using her for that at some point, but as many people as I can get in my tool box, I need them. I need them around me, I can't do it by myself.

This quote from Boys Town has been a part of me for a long time. Way before I brought home a little girl that was deaf, I worked for Boys Town. In time, most parents come to realize that many of these dreams they had for their child can still be accomplished despite the earring loss. Your kids that have hearing loss have the same aspirations and goals and can be the exact same thing that your kids without hearing loss can be and sometimes that, you're thinking, as a hearing parent, how do I work through this? They're not ever going to be, I had a mom tell me the other day, my child is probably going to be profoundly deaf and he's nine months old and he's never going to be anything but a teacher.

Well, first of all, what's wrong with a teacher? And I'm like, there's a lot of teachers and we need teachers, but why? She said, the only deaf adults I've ever known have been teachers. We connect you with some deaf adults that are and aren't teachers, I introduced her to an engineer, and you know, she's like "my son could be an engineer?" It's just teaching the people around you and learning for yourself and not being afraid to say that. For her to feel okay to say to me, my child's never going to be anything, that's hard to say. But now she said it and we can work through it. Not judging the next person, that's

big. Connect, connect, connect, you know, it's all about connection.

What services do you have in your community? Things you can figure out for support, find groups on Facebook. Find local, your school, if you have a family weekend retreat, if you can come to things like -- anything that is offered, go to it. And don't complain that you don't have the opportunity to do things if you're not going to things that are provided. Because...there are -- if you have a local Hands & Voices chapter, go to that, get the connection, find the parent guide. Parent guides sometimes will be your Lifeline, for awhile until you can figure out how to do things on your own. Their goal is to help you be self-sufficient and connect you with other people and it works. It just, it works. I had a parent guide, I am a parent guide. Without my, I never met my parent guide face-to-face, Texas is a huge state, she lived in -- seven hours away from me, but we communicated on the phone. She had a son that was older, 13, had a hearing loss and could help me through the process. Here's what you do, here's what you look for. There are so many people, if I didn't have them, I wouldn't be in a place where I am now. I'd still be out there floundering, trying to figure out how to connect.

So, if you have Hands & Voices, get in contact with them and get your parent guide to help you. Other than Facebook and places in your community, find support groups. There's gotta be something in your area, I mean, I don't know where you live. If you're in Alaska, there might not really be a support group for you. Once you connect to just a few moms, those three moms are going to know three more things and three more resources and 16 more things you can have to support you. Use what you can, use what's around you. That is all I have and we're close to end of our time. Do you have questions or, yep?

I do and it's awesome. You don't have to be just a teacher. That helped that mom get to her place. You do what you do for your child. Anybody else have questions of how to get to anything or find support, floundering and need something today? You're not floundering, I do not want to hear from you.[laughter]

I would say, first of all, don't judge a book by its cover. What you think they might need, might not be anything they need. Yeah...and asking them direct questions. I mean, you have to be,

you can't just say what do you need? They don't know what they need. Maybe you just say they're in a new place and you say, this is what you do today. I'm going to check back with you, is this what you do. You're going to go do these three things, I have already signed you up for this thing called Hands & Voices and you have a parent guide, they're going to call you. Answer your phone, e-mail them back and they're going to walk you through this process. Do you have like, talk to your ECI coordinator, talk to -- just, I think for the coordinators to kind of know that, when you're in early intervention and you go in and say, here's what you need. They don't know. When they're tiny little ones and you don't have a deaf person in your family, you've never been around a deaf person, you've never seen sign language, you have no idea, it's overwhelming. So, for the early intervention coordinator to go in and say, here's what you do, I need you to do these three things. We're having this event, I need you to be there. It costs $75, you don't have the money, let's find resources. Helping people find resources is big. But not just, just thinking this person is a therapist, by trade or she's a whatever...you know, whatever the family looks like, that they have it altogether and they know everything, they don't know everything. They need, sometimes, somebody to walk them through that, what they really need is you to connect them to another family that's already done it and if you have to go meet with them at your house or have coffee or whatever, just make them connect. In that early time, you don't want to connect with anybody, you're just trying to stay afloat, trying to stay afloat. If somebody will invest in you and take the time to make you do it, super beneficial. We're all done? Thank you.

[Next presentation].>> Hello, my name is Lisa Crawford. We only have 30

minutes, I have more slides than I will probably get through, but...I just want to explain up front, I'm going to go through some really quickly and others ones I want to hopefully have a little time at the end to have a little bit of group discussion and feedback.

I work for a state outreach office in Texas. I'm connected with the School for the Deaf, but we provide services across the state

to families with children who are deaf or hard of hearing, birth to 21. I'm also, we help fund and coordinate the Guide By Your Side program in the state. And...I'm also on the board of our Texas chapter of Hands & Voices. And I'm a parent. My daughter is now 18, she just started college. When we got EI services, it was a long time ago, but I still remember it. And I just want to give you a little background on why I chose this topic. I do work with families quite often. Recently our state has been trying to improve some systems. We've been working on this issue on how to help families get into services, addressing loss to follow-up and then we're just finding out information about misunderstandings that parents may have about what early intervention is or why it might be needed. So...I just had a curiosity about this and decided to do a survey. So, it's a real brief survey, but I love kind of getting feedback from parents directly.

So...that's really the meat of what I'm going to talk about. Just curious who's in the audience today. How many -- I wrote this down so I wouldn't forget. Early intervention service coordinators? Any medical providers? Pediatricians? Audiologists. There we go. Deaf Ed educators? Okay...parents? Okay...EHDI program staff? Anybody else I forgot?

Okay, great. So...yeah, this is a little bit of information, I think it crosses the continuum in a lot of ways.

So...all right, so here's the learning objectives. You might have seen it in the abstract, but really, just trying to, with this short survey, trying to get at why parents might have been satisfied. Hopefully that's my title. Hindsight is 20/20. Parents that have gone through it, looking back, thinking about services they received. Did they understand them when they got them? Did they think they got what they needed? How would they rate them?

And looking at possible strategies to get parents enrolled in those services if they didn't understand them or possibly may have even refused services because of that.

I'm not going to spend a lot of time on this, I have four or five slides that touch on JCIH guidelines and principles. If you don't know what this document is, I assume probably most of you do, but if you don't, it's the Joint Committee on Infant Hearing. On the handout that should be going around, there's a link where you can download the document. It's on the American Academy of

Pediatrics website and it's just a great, great resource, it talks about best practices and guidelines and principles related to EHDI programs and how those services should be delivered. How families should be given information and there's just all kinds of reasons why I love it, but I just pulled out a few things and I'm going to go over them really briefly. It kind of comes up later. I tried to pull out the things that were in the 2007 updated version. I actually have heard there's another update coming, maybe 2015, but...I, I haven't gotten any detailed information, but this is just something to watch out for.

So, I pulled out things related to early intervention services and communicating with families. So the document is much more complex and goes into all, other areas of EHDI, but some of the things I pulled out, these were highlighted updates in 2007. All families of infants with any degree of hearing loss should be eligible. There should be an easy pointed entry for services, which we struggle with in our huge state of Texas, but these are things that should happen, would be great if they did. Oftentimes we struggle with them.

Early intervention should be provided by professionals who have experience working with children with hearing loss and that doesn't always happen. That certainly didn't happen with us. It's kind of a funny story now, but when my child was identified, she was about nine months old and the first person who came to our home was someone experienced with blindness. We were like...why? But that was the closest they had, the closest they could get. We actually ended up moving, three months later, to get across the county line, because we found out there was a different program and different services, not too far away. That kind of stuff, unfortunately does ham. But it certainly is something we still struggle with sometimes and it's something to be aware of.

In terms of the natural environment, they did some clarification on that and in the last update, related to the services could be home-based or center-based so they clarify that and then communication, this is key too. Many times they are given to the parent, but doesn't mean they understood it. It's an overwhelming time. That's something we often find is a misunderstood issue with parents, the hospital said we gave it to them, but the parent doesn't know there was actually a referral or a need to follow-up.

Parents should be provided with the appropriate follow-up information and I've I've got a couple highlighted in red. I think they're so important. Communicating with the family in an understandable format. Oftentimes families are given a brochure or they're, they've sat down with somebody for five minutes and somebody explained something to them. Did they understand it? Did anybody check to see? Did you ask them to repeat it back? Did you ask them if they had questions? Did you take the time to really make sure they understood what they were walking away with? And I think it, it takes repeated exposure, a lot of times for parents, I know for me, it certainly did, before I fully understood a lot of the information that was being shared.

Just transmitting information amongst systems, not just with the family, but that's very important, and then the last one here is that it's just key that families should be made aware of all the options related to communicate and hearing technologies, presented in an unbiassed manner and that informed family choice and desired outcomes should guide the decision-making process.

I could do a whole day on unbiassed manner and how you do that and how you share that information, but I think the one thing I want to just emphasize and involving Hands & Voices, of course, we train on this all the time, it isn't about filtering out information that you give to parents, and just giving them something that's very white wash with no one's opinion in it, it's helping the parent understand, there is some controversy out there, there's a lot of opinions out there, but you need to go to all different sources to get good information. And to empower them to be the ones to go out and do that.

So...how I would explain it is that you're really working towards bringing them in the direction to find out about all of these options, give them information as best you can, but the one thing I tell parents is the huge red flag, if there's one person in your life trying to be the expert in everything, runaway as fast as you can. Nobody can be that person. And you need to ask questions and meet people and go and meet a deaf and hard of hearing adult and talk to somebody who is in a signing program, in an oral program and visit those places and learn these things for yourself. There's just no one size fits all.

And two real quick, updated principles, focusing on the informed choice, shared decision-making and families having access to information about all the options and then, again, reemphasizing

that services should be provided by somebody who is knowledgeable about childhood hearing loss.

Okay...now we're going to skip to the survey. I did pass out the questions that I actually included in the survey. It was very informal, not research-based, just I like doing surveys and so, I threw together some questions. If you look at the questions, some of them are logic-based, meaning that however they answered one question, some other questions might have popped up. They didn't necessarily see each question.

I pulled out the main ones and summarized them here, but there's a few other ones, just so you'd have the list of questions I provided and on the back, there's that link to JCIH as well.

So, I did get 67 completed surveys, which I was pretty happy with. I used the national Hands & Voices network to get the survey out, we also used our Texas Hands & Voices network. For the most part, most of the parents filling these out were already connected. It's really hard to get to those parents that have never had services or still don't.

So...you know, we are kind of missing out a little bit there, but I really wanted to hear some, you know, on the ground stories from these parents and get their feelings about what their services look like and then, they're just parents with children of all ages. I didn't know how many responses I was going to get, but it worked out well. About a quarter of them had children that are birth to three now, who are in services, we could get their perspective and you can see about 20% was over the age of 12. So we had a pretty wide description of families.

Then I asked about the age of ID. I was just curious. Numbers don't look awful, but good 55% of them were identified at birth to six months, that did pretty good and we had some areas you know, numbers across the board and then I pulled out the three years or older. So we did have a little bit of a jump there, where 12 out of the 67 were actually identified after three years, which of course, then goes into whether or not they received early intervention services. So, those 12 did not, that's why it makes sense to connect.

But 55 and the 67 did receive services. So...then I got into asking them to rate their services. On whether they felt they got what they needed and just in general, how would they rate them? I kept it very broad and put some open-ended comment boxes in there for them to explain their ratings.

The majority of them rated their services excellent or above average. If they got good services, they went on and on and raved about their early intervention. People were using names, they were just going on and on. I'll summarize those comments in a minute and we did have some that were average to poor. So, I really wanted to pull those out as well to see why they rated it that way.

So, started out with those average or below ratings. Most of these are just direct quotes. A lot of these correlate to the JCIH principles. They weren't getting done, therefore, people weren't very satisfied with and so these are very directly related.

The first one is that no options were given. They were told what they would get. Delays to determine eligibility, which resulted in a delayed enrollment. Providers pushing their opinions, low expectations for the child. Personality conflicts, with the provider, service coordinators or providers that were unknowledgeable about deafness or hearing loss. Poor communication and follow-up. The parent was the one that had to contact EI in order to get services, instead of the other way around.

And then, favoritism shown towards specific ethnic backgrounds. We've got comments all over the board. And then I kind of pulled out these comments for those that rated their services above average or excellent. Comments about being paired with the deaf or hard of hearing adult who was trained in sky high. Services changed as appropriate. EI helped us understand that we're providers of therapy to our child. She did put that in quotes. I know over the years, we don't want parents to feel like they must be the teacher to their child, we want them to be a parent, but I do think the model has changed over time. When I was in services with my child, I think it took me, I didn't realize that, really, for quite awhile, I thought that provider is there to work with my child. I would watch and sit and learn on my own. Now I think that model is really changing to include that parent as much as possible.

So...I've seen that shift myself and I think it's really key that parents understand their part in it but aren't made to feel they have homework six hours a day and don't have time to be a mom.

And receiving assistance to connect to other families, that was a positive. It's great when early intervention providers can do that.

They were responsive, they'd answer questions at any time, they listened, that's a simple one. They provided a play group and they shared information without bias.

So, of the parents that said they didn't understand their services, I tried to pull out more about that. What didn't you understand about them? These were the comments. They didn't understand all the options. They weren't explained in full. They weren't given all the options and they weren't sure who paid for services. That's something we hear quite a bit. Parents can sometimes turn down services because they really don't understand who pays or how that works. And...oftentimes that's really something you have to spend some time on and work through with the parent and that, I know that looks different in every state too.

Then, more of that same question, what didn't you understand? It can be difficult to understand the service delivery, what are the agencies coming into my house, who's providing the therapies? Why are you here? What do you do? And I think that's really something that can be very overwhelming for families.

One family was excluded from connecting with other families. I don't know why they don't know why, but they put that down. It was assumed that they wanted mainstreaming and other options were not given so...I think, again, this is hindsight. They look back and they know, there were other options, but when did they find out about that? We don't know.

And then I wanted to kind of try to get into you know, now that there were things you understand you didn't understand, what would have helped you? What do you think would have helped you understand these services better? The comment was, somebody who had experience with children with hearing loss, you know, one story that I, that I've heard from a number of families could be an example of an audiologist who is used to working with adults and they come in with this child who has been diagnosed maybe with a mild loss, they're told, you know, it's mild, just wait and see what happens, there's no rush, we don't need to get the hearing aids. Nothing to fault the audiologists, but they don't have that experience with kids and they're making that assumption and I've heard that story quite a bit.

So that's just like one example that there's definitely something to be said to have that expertise working with these children. I mean, it's just something you really can't get around.

Having the options explained to them, that's something they'd like to see, would have like to see happen. Time helped, it was just too hard to grasp it all at once. You cannot give it to a family one time and expect them to fully internalize it all.

More explanation during the intake about what to expect. Time, most parents don't care what EI is until they need it and then it's a learning process. So, I think again, that repeated exposure over and over.

Someone who was knowledgeable about hearing loss and then she identified herself as a deaf mother and no one explained services to her. So obviously there might have been a language barrier there. Something that needed to be addressed and wasn't.

So, you've got the survey, I'm going to skip through this quickly. I want to get to the last two slides and get some comments from the audience. Case studies, we're doing something in our state right now, we have parent guides contacting families who are in the process and aren't advancing through and they're trying to identify the loss to follow-up and whether it's a loss to documentation or whether or not that family truly is not following up with an audiological appointment or whether that family's into early intervention services. I had a few anecdotal stories about that. I'll get to that in a second. Some families don't know if they're receiving services sometimes. They had someone come into the home for another reason. Maybe their child has other issues. Sometimes they don't know they're getting it or they just decide to go with a private, you know, services because they've run into walls and barriers and don't want to wait, but I think the knowledge that you could have both private and public is certainly helpful.

So, this is where I want to get to so we can chat about it for a few minutes. I have two slides. I want to talk about the difference, suggestions for when you're offering services, what kinds of things could we do to improve our on standing? And the second part, once services are initiated. So, for this first one, we have somebody in the audience from our state, Gene, he kind of worked on a script at one point. She was trying to help her early intervention providers over the phone. We had this long conversation, there was a lot of things she hadn't thought

through, but we were still looking at it in a lot of ways, we're still back on our, you know, developing that and she's going to work on that, but I think what that process taught us, there are so many scenarios you can't anticipate you can't create one script that will fit all. You have to do a lot of training and work with those coordinators to give them examples of what they might need to provide to the parent and how to respond when parents act a certain way. And not try to get overwhelmed. You get on the phone with a parent and you're trying to explain everything all at once. They don't know who you are, they don't have any reason to trust you. You have to kind of build that little bit of a rapport. It's been very nice to have some of our follow through guides who are parents themselves call these parents and try to connect on that parent level and then start asking some questions about where they're at in the process.

We have found that a lot of parents, obviously, don't understand why services might be needed. They have this, you know, two-month-old who is deaf but it's kind of an invisible disability, you don't see a language delay happening, you don't maybe understand the implications of that, so it really needs to be explained to them why those services are needed and what they can, how they can benefit from them and how their child can benefit from them.

And then, eligibility in our state, we're supposed to provide some support during the identification process because there's a referral after the out-patient screening, but there's not a consistent understanding of that across our state, so, oftentimes, families are told to get the diagnosis and then come back for services, but they may be running into barriers to get the diagnosis. So, who's helping them there? And I'm sure different states that might look different, when can EI enter in and start providing support?

I wanted to open it up and see if anybody else had thoughts on when you're offering services to parents, what would help them understand better or what could we do as providers to facility the parent understanding of services?

Okay, I'm going to repeat for CART, but she has a question about the survey process. Okay, the question is, did I have families respond who had more than one deaf child and was there a difference between when the first child was identified versus the second child? Unfortunately, no, I wasn't able to pull that out. I didn't ask that specific question, but just because I do work

with families, I think, I do hear that quite often is that they'd certainly learn, having that first child, then what might be expected and what they can, then, ask for and what it might look like, but I would --

>> [Speaker off mic].>> Okay. Okay, so she was asking because, she has three

children who are, who receive services and she said the services had actually diminished over time and she was curious about that. But I didn't, I wasn't able to pull anything out in this particular survey.

I saw another hand. I'm going to, actually -->> My questions is, for the ones that declined services at

the beginning, you had families that didn't opt into intervention -- you do any more additional questions as to why they didn't opt-in to intervention?

>> I was hoping to get some of those in the survey, but...again, I think because I was tapping into a pretty educated group of parents that I didn't get many that said they refused. I got some that said I didn't receive any services, but most of those were because the child was three years or older.

But, just anecdotally, we do hear sometimes that it's because they're not sure what the services are. In our state, some of our ER services are under the umbrella of MHMR agencies. Mental retardation. They're identifying themselves through this agency. There's that disconnect. It's like why are you calling me? That doesn't apply to my child. Things like that that I've heard. Payment, if, if there's a payment required or they think there's payment required, they may not think it's something they want to take advantage of. Those are just things I've heard. I don't know if anybody else has heard of other reasons why parents might refuse services?

So you decline services based on what they were providing you? >> Yeah.>> So the service coordinator was coming in and not looking

at what the child needed, just providing what they had and it wasn't helpful so you just opted out. That makes sense. I know we only have like a few minutes, I wanted to get to the next one. This one would be, when services are initiated, what kind of strategies could we use to help parents understand services? So you know, just pulling out a couple things here. Which hat each person wears, what kind of services they might be providing and placements, what placements are possibly available and the

communication options. So, you know, obviously you can't do that in one visit. That's something you have to do over and over again and try to kind of meet the parent where they are. Which can be you know, really interesting. I wanted like every bit of information all at once and some parents you know, just a little bit at a time, so you want to really work with them and see how comfortable they are with receiving it. Just, ongoing review of the IFSP is always good, the progress of the child and then connecting with other families, I think that's absolutely huge, like Tiffany mentioned in her presentation. That helped me, talking with other families, trying to figure out how they used their early intervention, whether it was to do dishes or whatever, but finding out how those services can look is really helpful, because I had no experience with that. So...it was really a key piece to get that peer support.

Any other thoughts on that? When services are initiated? >> [Speaker off mic].>> I didn't get this translated in Spanish. I was going to

do that, but ran out of time. One of our follow through guides is bilingual, she's able to speak Spanish and calls them.

So, one thing that came out of that, I overheard a comment where our EHDI department wants them to identify, they are with the state when they call. So they're aware of who's calling. She had experience with certain parents, when she did that, they'd hang up on her. She had to be clear about who she was, what she was doing, so just understanding, you know, families are coming from all different places and you don't know their situations and you really want to be sensitive to that. So, any other comments? Yeah?

>> In our program in Massachusetts, we have a specialty service program for deaf and hard of hearing, babies and toddlers. One thing that's been helpful to parents, when they come to visit our program for the first time, they get our handbook, a welcome packet, what the roles are, what the services are, the menus and digest it in their own time. Not just sit down with our family liaison for an hour. Get a range of information that they have to remember and process, something they can go home with, like a signing time video or other information on things they digest over time. Having a handbook is helpful for our families.

>> Yeah, that's great, anybody else? I think we're about done, I'm sorry. So, if you have any questions, feel free to ask me, but thank you.

[applause]

[Please stand by for next presentation].>> Okay...my name is Jane Madell. I'm an audiologist,

Auditory-Verbal Therapist and Speech Language Pathologist and I'm going to talk about the audiology part of the team. Also on our team is Monique Baker, who is a mom of a 5-year-old with bilateral cochlear implants and also the director of Kentucky Hands & Voices.

Next to Monique is Sally Tannenbaum who is a teacher of the deaf and she is an Auditory-Verbal Therapist and works at the University of Chicago Medical Center Cochlear Implant Program. Whoo! That was hard.

Okay...now I just have to figure out how to forward the slides on this thing. Next, okay...this isn't a good thing. I don't -- wait, I'm sorry, there's the remote. Okay...one minute, something's going on, everybody I apologize, I hate technology and I have the most slides in the -- okay, there we go. So, Sally came up with the name dream team. The whole idea is if we can get everybody together, it really be a dream team. A long time ago, we thought we were just supposed to tell parents what to do, we know now, that was a really bad idea. Tell me and I'll forget, show me and I will remember, involve me and I will understand, step back and I will act.

So, our goal, really, is to help parents be the senior member of the team.

So here's a team. You can see that the family is in the middle, but the family is also over here, because while everything surrounds the family, all of these people are part of the decision-making process and the family is definitely in it.

So, the role of the audiologist in the dream team, the first obligation of an audiologist in this team is to have high expectations. Good enough is not good enough. Only absolutely excellent is good enough, as far as auditory skills are concerned.

Somebody said to me the other day "when I think about you, I think be your saying every decibel counts" and I really believe

that. It's not okay, it's just gotta be right up there. We need to be able to listen to the people who work with our kids every day. Because the people who work with our kids are working, seeing those children more often and we need to be listening to those kids and hearing what they are saying about how a child is performing. I forget to do this when we started. How many people in this room are audiologists? Speech Language Pathologists? Teachers of the deaf? Parents of children with hearing loss? Great...EHDI coordinators? Administrators? Did I leave anything out? Students? Thank you. Sorry. Pediatricians? Whoo! Really bad. Okay...you were on the list of people -- sorry, I apologize.[laughter]

So, we all need, we need to listen to everybody on the team. One of the things I hear from teachers and from speech pathologists and Auditory-Verbal Therapists all the time is, I tell the audiologist he can't hear S and they're saying I did my job you know, now it's your problem. Which is, of course, ridiculous. If the kid can't hear S, it's my problem. I'm the audiologist, I set the equipment. We need to listen to each other.

We need to problem solve to make sure that access to auditory information is really happening. I hear from a lot of people, a concern that we shouldn't be making hearing aids too loud because we are overamplifying and will be damaging the auditory system. I've been an audiologist for almost 50 years and I have seen enormous changes in technology and I have fit, I don't even -- I can't even imagine how many hearing aids and cochlear implants I have fit over the years, but I haven't seen drops in hearing as the result of fitting technology. I am much more concerned about not having access for language than I am about a kid who's got a profound hearing loss, having a drop so I can make them hear better.

So...if they -- I mean, I haven't seen a kids hearing drop from technology, but, the hearing loss offers some amount of protection, when we're putting 130 decibels into an ear of a child with a profound hearing loss, it's not the same as putting 130 decibels into a normal hearing ear. I think the overamplification thing, you need to lay it to rest.

Audiologist basics, obviously, we're testing hearing. We're going to select and evaluate technology. We need to be sure that we know how a child hears with their technology. With their

hearing aids, with their cochlear implants, with their bone anchored systems, with their FMs. The only way we know that is testing. You cannot assume. It's telling you how much sound is reaching the eardrum and what I like to say is, you can get really [indiscernible], it has nothing to do with how the child's hearing. We need to put a child into a test booth and make sure they have the auditory access for brain development that we want them to have.

So we need to get aided thresholds for the right ear alone and the left ear alone so we can make sure they're hearing what they need to hear. If we test bi-neutral and not test separate ears, we need to do that. We know the child's hearing throughout the frequency range and we need to do speech perception testing. Before a kid is ready to do regular speech perception testing, we can use body parts and familiar words to make sure we know this child is hearing. We want to be sure that the child is hearing at the top of the speech banana or what I call at the string bean, so we know the child is really getting every phoneme they need to get. You want to monitor their progress, we want to talk to families about the test results and make sure they understand what's good and what wasn't so great about how a child is hearing. We want to work cooperatively with other team members within our center or at other centers.

It's important, if a kid has appropriately-fit technology and enriched auditory exposure, they're going to have great auditory brain development. If they do not have appropriate technology, if it's not providing responses in the string bean, no matter what great auditory exposure we give them, they are going to have poor auditory brain development.

If we get the best possible technology and they don't have auditory exposure, no one's talking to them, they're not going to have good auditory brain development. So, it's really critical that we make sure we get, everybody gets everything.

So, here's the speech banana. Our old fruity friend. If you're at the bottom of the speech banana, you only hear 10% of what is said. If you hear at the top of the speech banana, you hear 90% of what is said. If you hear in the middle of the speech banana, you hear about 50% of what is said. My goal is to have the kids here at the top of the speech banana which is why I want to talk about the string bean. That's where I want my kids to hear.

So, we need to know if the technology is appropriately fit. The child needs to hear throughout the frequency range. 6,000 and 8,000 hertz really matters. If you miss the high frequencies, you're missing very important grammatical markers. You're missing possession, pluralization, non-salient morphemes and nonstressed markers. If you miss those things, it's going to affect language learning and literacy. And therefore, all the goals that you have for the child. We also need to be able to hear soft speech, something like 90% of what kids learn, they learn by overhearing it.

If we have to teach kids by having a face-to-face dialogue for everything they have to learn, they're going to have limited learning. How many of you have had the experience of saying something to your partner and having your kids say "why did you tell daddy that?" Why were you listening? But for the kid who didn't hear that, they're missing a lot of language. So...we want to really be sure that kids can hear soft speech. We need to test them at soft speech. If you have aided thresholds of 35 decibels, you're not hearing soft speech, that's where soft speech is.

Our goal is not to hear at zero decibels, our goal is to hear at about 20 so that you can get good speech.

Audiologists need information from the family and the early intervention providers and the therapists who are working with this child. What phonemes is he hearing? What phonemes is he missing? How far away can he detect the sounds? Are his language skills developing in one year progress, in one year's time? Do other team members have concerns about how this child's auditory skills are developing? And what specifically are their problems? Is the child using an FM system? Are they wearing their technology full-time? What situations are difficult for a child to hear?

If a child is not doing well, we want to change the technology settings, we want to try new technology, and maybe we need to consider a cochlear implant. We need to listen to the reports from other team members. We want to listen to their information, we want to modify the settings. If a therapist says to me, he can only hear sss when I'm standing right next to him, I know I have to change the settings on the technology to make the high frequencies at 4 to 7,000 hertz higher, otherwise, he's not going to hear that, that's my job.

We also need to teach parents how to change technology and parents of newborns can do this. We teach parents, when you put one hearing aid on and say bah bah bah, watch was the baby does. Let the parents tell us what phonemes the child is hearing and at what distance, in the right ear and at what distance in the left ear, so we can then go to the audiologist and say, fix this, we need to make it better. What are we --?

So, we can have parents check one, check information in the right ear, next time the baby wakes up, test one phoneme in the left ear, time after that, test another phoneme in the right ear and get yourself the whole picture. When you go to the audiologist, you're ready. I encourage parents to keep records so they know what the baby hears. I encourage people who are doing therapy with the kid, to keep records and tell the audiologist so the audiologist knows what they have to do to change the settings of the technology.

So, if a child is not making progress, suspect the technology first. Is the child wearing it full-time? Is he comfortable with the technology on? Can he hear high frequencies? Never assume. Test the child and tell me whether he really can. Is he wearing it consistently? If a child wears technology four hours a day, it will take him six years to hear what a typical hearing child hears in one year. We need to help parents understand this so that their goal is to keep the technology on full-time. Does the family have appropriate expectations? Are they requiring full-time use of technology? Are they providing auditory stimulation? Do they expect the child to listen and talk or do they assume this child can't listen and talk? Do the clinicians who are working with the child have appropriate expectations? Are they checking the technology? Are they keeping it on? Are they expecting the child to respond and reply when we talk to them?

Okay, I'm going to move onto Sally.>> I'm going to keep talking, I've been doing early

intervention for about 35 years and it's really, really changed over time. It's, we wear so many hats, I can't possibly address all of that now. Who are EI providers in the room again? We're really honored, I feel like we're all really honored to work with these families on their journey, whatever that journey is. I think in the long run, it's how do we want families to remember our role? Were we there for them when they needed it? Did we really ask them, what do you need now? What can I do for you now

and Dr. Fletcher talked this morning about language outcomes, what the communication outcomes the parent wanted. It was our role as an EI provider to guide them through that, that language outcome. I'm a spoken language, listening and spoken language, certified Auditory-Verbal Therapist, I can work on listening and spoken language. If a parent chooses total communication outcome, I need to provide that. If someone chooses listening and spoken language, they need a team who can provide that.

While we're working with the parents a couple stories recently came up. When I talk about experiences to make it meaningful for the child and the family and at the same time, be realistic and consider the families demands.

So, at the hospital, I have parents telling me about their EI and I have EI providers coming to me telling me about the families and one EI provider told me the family wasn't able to follow through on anything, she gave them a very simple activity of doing Goldilocks and the Three Bears. She modeled it for them and asked the parent to go home and do it, the parent couldn't do it, she said she felt overwhelmed. She has four children, she drives four and a half hours to go to therapy. She doesn't have time to sit down, get three different bears, three different sizes, three different bowls -- I was thinking, it's not about Goldilocks and the three bears, it's about the language. So I said to mom, do you get your child dressed? She said yeah. I said maybe one time you could put on something that was too big and say, oh no, this shoe is too big, you know, this shoe is too small, this shoe is just right and leave it at that or maybe when you're feeding your child, give them something that's too hot or too cold, just, what we need to think is think about what these families are going through and try to make it meaningful. Because I raised three little kids and I remember lying to my pediatrician about are they getting dressed by themselves, oh yeah, yeah, are they putting on their own jacket, absolutely they're putting on their own jacket. Who has time to put the jacket upside down and wait for three little girls five and under to put them on? Nobody has that time. So, I just feel like we have, we have to guide them through this, but we have to be realistic. My job is not to make the parent a teacher, it's just to provide their enriched language environment and we can do that, they can do that, but we need to do it together.

So that's my, that's my spiel, basically. Also, we said help the parent be the child's advocate. They're their advocate from the

very beginning, but they don't know that. Every time they do something, I was at the park today and somebody asked me about the hearing aids. I said, what did you do? They say, I told them. You are your child's advocate until they can advocate for themselves. Every step of the way, we're building and empowering this parent to do it. They just don't know they're doing it.

Jane talked about high expectations. In Illinois, it's different. I'm a developmental therapist who specializes in hearing loss, I'm a DTH, I'm on the team with a speech pathologist, PT, OT, whoever's on there. In some states, you don't have a DTH, which is really unfortunate. I feel like whoever is an expert of the child with hearing loss needs to take over, needs to take that role on. So...if you have a team and you know how important it is to keep that amplification on, you need to let every team member know that. You know, somebody needs to step it up and tell the PT that you know, that child needs to be wearing their Baja all the time. We need to come up with a system to help mom keep it on, whatever it is. So, someone really needs to take a leadership role and communicate with the hospital. So that's my other hat, I am the codirector of the Pediatric hearing loss program at University of Chicago Medicine, along with Dana Meskin. We came up with a team we sent out. EI providers are definitely part of the team. We do, we want your input, we, we may not, you may wonder why we went ahead and did something that you didn't recommend, but we really, you're the ones working with the families, we value your input.

So...this is all up online, I don't want to take up Monique's time, you can look at this, but the bottom line is, it's important to ask the parent, do you see a difference when your child is wearing their hearing device? And let us know what the parent says. We ask the parent that too, but everybody needs to make the parent aware, oh, should there be a difference when they're wearing their -- you know, what kinds of things are you noticing? That's really important.

Then of course, we're looking at how often is this patient wearing their device? And to tell you the truth, our team has kind of gotten to the point where if the device isn't doing any good, we are not holding back because they haven't worn their hearing aid consistently. We're finding over and over again, the parent who doesn't put the hearing aid on consistently, they're wearing the cochlear implant because they're getting results from it.

It doesn't always correlate. The child's not wearing their hearing aid 24/7, how could you implant them? They're not wearing it, they're not getting everything and we get that. It's hard to keep putting on a device that they're not seeing thing. We encourage parents to wear it, but we know when they get the implant, they're wearing it because they get benefit from it.

The other thing, real quick, Dana is wonderful, our doctor is, we don't punish a child because of the parents. Parents don't always do what we say, but that's not the child. We need to look at the child, okay? Even our parents that don't always come to mapping, if they wear the device, they're getting benefit and it's really made a difference.

The other thing we're looking at, what kind of, yeah, speech and language, what kind of vocalizations? How is the child communicating? What's the quality of production and also areas of concern.

Most likely we all have the same areas of concern. We see families with unrealistic expectations and we try to council as much as we can. We know parents might not be great at that follow-up, we're looking at cognitive skills and other disabilities and the bottom line is do you think this patient has hearing access to all the speech frequencies? We need to know that. If you don't know how to do that, talk to your implant center and they'll guide you through how they can determine if you have access? Yeah. I saved you, I wanted the parent to have lots of time to talk, this is Monique. You need this.

>> Okay, is that high enough? Okay...is that good? Is it working? Yes, okay...I'm going to talk about the role of the family. I'm, first and foremost, a parent. A lot of this -- is that better? Okay...so...a lot of this is stuff that I've done, but also stuff that I was told to do by my team, or coached to do.

So...best practice is daily listening check of equipment, of course, you want to make sure if your child is amplified or wearing technology, that it's actually working. When we had hearing aids, we had a device we could listen to it, same with cochlear implants, but I opted to use the remote so I could see everything's green, everything seems to be working correctly and I know. Or you know, do a quick check of the ling sounds. Did I do this every day? No. I still don't do it every day, but you get to know your child. When they're really babies, it's a best practice for that.

Identify problem areas in their speech, speech perception areas. If you're saying something and they're responding back to you in a different way, we had my daughter in a sound booth one time. Many times she says an FL or hear it splash, she'd say splash. We kept testing it, we checked her mapping, she did tweak it a little bit and she did a few more times at home and that was it. So just you know, really being cognizant of that, making sure you're getting your equipment checked if you're having speech perception areas.

Situations with, in which your child's not hearing, you know, of course, it's going to be usually those times when it's really high background noise or a gymnasium, when she's at her brother's basketball game and there's six other basketball games going on at the same time. You know...that's correct barely here, let alone, you want her cochlear implants on, it's just so over the top for her. With their buzzers going on.

So, being cognizant of that, you know, not forcing her to sit there, if she wants to take one of them off, it's fine with us. We also had our audiologist program a noise background in for us so we could turn that on, it just dampens all that background noise. She could only hear stuff in front of her, but that's fine for her in that environment. Be aware of situations like that.

And learning concerns. If your child's not meeting your goals, his or her goals, being proactive and looking out for that. I guess this is the third time we've had this in here, have high expectations, but truly, the sky is the limit, shoot for the moon, if you reach the stars, then I think you've won majorly. For me, one thing I did and continue to do when setting goals for my daughter, I always look at that. Will she be meeting that halfway through the year? Is this going to be hard enough for her? Or our suggested new goal, if I get the answer, well, that's what a typical 3-year-old was doing, then, and she's 2 and a half, then I'll feel like it's a good goal. She's, I want her to be caught up, I want her to be doing what her age-appropriate peers are doing and listening to your gut. You know, as they said, you, I'm my child's advocate, I'm teaching her and I will continue to teach her to advocate for herself but nobody is going to do it, except for you, even if you have the best team, they have your child's back, they want to be on your side, but you are your child's voice, you are your child's advocate.

If you want your child to talk, you've chosen spoken language, even if you haven't, if you've chosen ASL, you have to provide them with a lot of spoken language. It's been a couple years, I went to a presentation, and one thing I took out of it is it's never too early to start incorporating additional language. Broadening their vocabulary. Don't just say "that's great" you know, it's fantastic, marvelous, incredible, extraordinary, continue to broaden that vocabulary for them. It's never too early to start that and describe everything you're doing all day long. I'm walking up the stairs now...you know, just the more language you can provide to that little child is going to just broaden that, broaden their language and catch them up faster.

Again with auditory environment, I never had music playing at home, never had a television on, if I was really wanting to work with her, I didn't want her distracted with background noise, it's just an additional thing that will distract her from what I'm trying to teach her or from hearing that language and be the listening police. Whether you're at home, in your child's classroom, go and sit in your child's classroom. Like, I hear noise over here. Is your child going to be sitting under the air conditioning vent, under a heating deck, computers where a fan will be going on all the time. Making sure they're not sitting close to those areas or even seeing if there's something they can do in the classroom to turn something off while your child's in there and work with your team.

I've been so lucky, one of our EIs in here, such a wonderful experience for me and my daughter, our team was wonderful. But I know that's not always the case. You're going to come across people that you don't necessarily see eye to eye on and you feel like you have different goals, but you know, stay positive, and don't just automatically go on the defense. Then they are going to go on the defense. It's a small world here and you're going to, it's going to circle back around. You have to work with that person again, you know? Next year, five years, you never know. You do not want to burn any bridges. Stay positive, they will respond in a positive way. You respond negatively, then someone else is going to want to reciprocate that.

And lastly, for us, I know, one more minute, parent support, for me, it was vital and I'd highly suggest to any parent to find other parents out there. I, I found other parents through Hands & Voices, which if you're not familiar, it's a wonderful worldwide organization, they have chapters in almost every state

that support other families for children with hearing loss. They have a Guide By Your Side program that pairs parent guides that have been trained, have walked down the Sam path with families that are newly diagnosed and make sure they know what their communication choices are, they know what opportunities are out there for them.

AG Bell Association, you know, there's multiple ones and at the end of the day, your providers are a wealth of knowledge of other families. You know, they, they can't just hand over the information, but they can certainly say "I know this family that is going through the same thing...why don't I call them and see if I can give them your number" or visa versa. Don't be afraid to ask your providers for other families that have walked in your shoes. Even just to connect, even if it's not apples to apples, to know someone with a child with hearing loss is huge. Is this your slide? I don't know who's slide this is, but it's self-explanatory. Educational advocacy and legal rights. I think that's all. Questions...comments?

>> We did really good on time.>> Very impressive. Got it done on time.>> We did, I know, right?

[applause]>> Questions? Comments? Thoughts? >> Yeah, go ahead.>> Okay, there's a YouTube video in which I have a

demonstration of what it's like to hear in the classroom with and without an FM system. It's great to show the teachers. They all go oh my gosh. It really makes a difference. I, I don't have something about early listening, but let me work on that. Okay? Anything else? Okay! Thank you.[applause]

[Presentation concluded at 3:51 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."