REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"Sound Features"
Room:  Vienna
Tuesday, March 5, 2019
9:40 ‑ 10:05 a.m. CT

REMOTE CART CAPTIONING PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
www.captionfamily.com

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Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings.

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>> Everybody, I think we'll settle in and get started.  Thank you for choosing this session this morning.  I'm excited you're here.  My name is Elizabeth Seeliger and I am from Wisconsin Sound Beginnings and an EHDI program director for 18 years, a long time, this might be one of my favorite projects, because it allows me to see my work come full circle.
It also allowed a really interesting collaboration I'm really excited to tell you about and hopefully you all can, if not help me expand this project, at least expand the idea of working with this group of people.
So, we have called this project Sound Futures and it was a collaboration between Meredith Brazza, who is in the room, stand up, Meredith, once upon a time, Meredith was a baby, and now she's Meredith. 
[Laughter]. 
>> ELIZABETH SEELIGER:  A doctor of audiology student.  And Ben Sheer who is a high school ‑‑ he was a high school sophomore when we started working on this project, he is now a senior and about to graduate.
And then myself, who a very long time ago was also a baby.
And the three of us worked together on this project.
So, a couple of things I want to tell you is that Meredith approached me and asked for something to do with Wisconsin Sound Beginnings as an undergraduate student, wanting to learn more about the field of audiology and early intervention in particular.
Ben's dad reached out to me and said hey, my son is looking at getting into an Ivy League school and he needs a special project and he really wants to give back to kids like himself.  Is there anything that you have in mind for him?
I, of course, said I have no idea what we should do together [chuckles], so the three of us just sat down and had a conversation, and out of that conversation came this project.
So I just want to highlight how cool it was to work with a high schooler and a college student, like the future, right, and myself.
So what did we decide to do?  Well, when we were talking about the resources that are available, we talked about sort of early hearing detection and detection itself and a project that connects parents with deaf adults, we talked about parent‑to‑parent support.
And Ben said well, wait a second, do parents have access to kids like me?  Do parents have access to, like, high schoolers?  My experience as a high schooler is different than deaf adults and would parents be interested in meeting someone like me?  And I thought that was a great idea.
What you don't know when I first started Wisconsin Sound Beginnings 18 years ago, the grant had a lot of information what I was supposed to do with hospitals, what I was supposed to do with physicians and audiologists, and the word "parent" didn't exist in the entire application.  It was written before me, I was hired after that written application, and I thought what am I really supposed to be doing here?
So I went and interviewed parents who had children who are deaf or hard of hearing 18 years ago and said what do you want this system to look like?  What am I supposed to be doing here?
And so Ben is featured in this video, so you'll see him tottling around as a 18‑month‑old and his parents really helped guide, like, the last 18 months of my career with this interview.
So parents experience the news that their child is deaf or hard of hearing completely uniquely, everyone has their own experience, so I want to just tell you this is representing only one experience.  And I understand that there's a whole range of other experiences, but I just thought it would be interesting to see where this little guy had come from, because I think that parents wonder, right, when they're holding that baby in their lap during the ABR and hearing that their child is deaf or hard of hearing, they're wondering what does the future hold for my kid?
Here's Ben's dad talking about that.  
[Video played]. 
>> I think it was helpful, especially with Jacob, that the person realized that you're a person ‑‑ that you're your child's dad and he's hearing impaired. 
>> ELIZABETH SEELIGER:  And it's a VHS tape that was audioized. 
>> It's not black and white and has a number, it's a person you have aspirations for.
And to some extent, when you first find out that they're shattered, although you seem to find out more and learn more about the whole culture and all the opportunities that they have to use whatever devices that people elect to get to put those pieces back together.  The lives are put back together and your dreams are put back together and your aspirations are put back together.
But there's a period of time where I think I'd use the term "shattered" for a period of time when you first find out, and you say what are they going to do?  How are we going to handle this and those sorts of things.
I thought it was very helpful to have such a personable experience with our audiologist who really thought more of you as a person, as a parent, than just as, you know, a 10:30 visit and it's over at 11:00 and, you know, move on.  I thought that was something that was great for us. 
[End of video]. 
>> ELIZABETH SEELIGER:  Okay.  So you have a little advice, those of you who are audiology trainees out there, these are people, not a 10:30 appointment, right?
And he talked about not knowing what the future held for his son, right.
And that his hopes and dreams had sort of been shattered.  I think that's really powerful.
And so I'm excited that we have an opportunity to highlight a variety of students, a variety of young adults who have different life experiences, who.... who define success differently; who see themselves and their own identities differently.
So what we did is Meredith and Ben and I got together, they drafted interview questions.  We sent out an invitation, just in one very small area of our state, because we didn't know how this was gonna go [chuckles], and we had the technology to do the videotaping locally, so we wanted them to come to us.
We had nothing to offer them as far as money or support; just an opportunity to tell their stories.
I want to use all of you to crowd source some information, okay?
So, this is not live, this is in production right now, so there's a couple of things that I'm aware of.
One, just by the virtue of how this project came together, an oral kid is producing it and I'm aware that there is some bias at the beginning of this, right, and I think there are some pros and cons having an oral kid be the one to introduce the project.
We do have a child who is culturally Deaf who is represented.  And we have a girl who is hard of hearing but uses sign language as her primary communication.  They have different educational opportunities.
But again, we just took whoever came in our door to videotape, so I just want to say that.
We also right now only have the videos captioned but in the process of having them ASL ‑‑ an ASL overlay so it's multi‑modal and accessibility.  But it's a work in progress, so it's not all done just yet, so I just wanted to put that out there.
Also, the IT guys that are helping me, they have a very long introduction time to read the little bio, and so I'm going to ask you, I'm going to play the video.
So this is what this is going to be, in case you want to leave. 
[Laughter]. 
>> ELIZABETH SEELIGER:  We're going to watch some of these videos so you can see who's represented and kind of the stories that are represented.
But there's an intro.  And when you're done reading it, I want you to raise your hand, because I have no idea what the average length of time it takes somebody to read these videos, so I'm going to crowd source your information today and note when the last person is done reading, I'm going to write down the time, because then we'll shorten that, okay?  All right. 
So here is the introduction to Sound Futures.
And this is that little boy in the video.  
[Video played with captions]. 
>> ELIZABETH SEELIGER:  Okay.  So ‑‑ yeah?  Did you have a question?  
>> [Away from microphone and unable to clearly hear]. 
>> ELIZABETH SEELIGER:  Oh, gosh, sorry.  Thank you.
There's actually a written introduction on the other videos [chuckles], so thank you for being such a good rule follower and instruction taker. 
[Laughter]. 
>> ELIZABETH SEELIGER:  So, that's the introduction.  Our idea is that these will be available on the website.  There will be that intro and then all of the other little picture files where they can click through and pick which ones they want to access.
The part that Ben was really excited about is that maybe also young kids would get to watch these.  He had met a little fourth grader at basketball camp that had a cochlear implant like he does and followed him around all day long and he thought maybe other boys like that one who had never seen someone with a cochlear implant might see these, and the EHDI coordinators that said 0‑3, that wasn't my intention, but that was his intention for the project.
So, here's the first video.
I'm going to do the intro, you're going to raise your hand when you're done reading, and I'm going to skip through, each video is 5‑7 minutes long, we can't watch them from beginning to end, but when it's launched, we'll make sure you know about it, okay.
I started where I could with baby pictures because I think this is what parents see and then this is who they wonder if they will become.
Whoa.... come on, technology.
There we go.  So here's the written introduction, and when you're done reading, raise your hand.  
[Pause]. 
>> ELIZABETH SEELIGER:  Okay, good.  Hold on, one second.....
Yeah, Connie?  
>> I would give it a little more time for everybody in the room because of language reading. 
>> ELIZABETH SEELIGER:  Thank you for pointing that out. 
>> There was a question in the back, why are we reading?  
>> ELIZABETH SEELIGER:  I was trying to understand ‑‑ this intro was 30 seconds long but everybody was pretty much done by 20 seconds, so I just want to understand if we have the timing right for the intro, and you're helping me understand that so I can go back and make edits if it's appropriate.  Or if it's fine the way it is, that's okay too.  Yeah?
We are going to hear from Jacob who is actually Ben's brother, okay, and.... we're just going to let this one play.  
[Video played with captions]. 
>> ELIZABETH SEELIGER:  So I just wanted to play one from beginning to end.
I think what we wanted to do is just normalize the experience of kids who are deaf or hard of hearing.  This idea that kids who are deaf or hard of hearing can grow up and be high functioning just like everybody else.
Instead of just saying the words, you know, which can kind of minimize parents' experience of whatever emotional response they're having, on their own time, they can go and seek out this information and be able to give themselves their own ideas of who their child might become.
This is Tobin.  I'm going to let you watch Tobin.  The video is silent right now, he signs as his primary communication.
It is captioned and we are working on having a voice‑over.  Okay.
So raise your hand when you're done.  
[Pause]. 
>> ELIZABETH SEELIGER:  Hmm.... the feedback is it's too small?  Okay.  
[Pause]. 
>> ELIZABETH SEELIGER:  Do you want me to read it?  Do you want me to start over?  No?
My family is a mix of American and Indonesian.  They're all hearing.  I'm the only deaf person in the family.  My mom is from Indonesia.  A lot of her family lives in Indonesia.  My dad is American and his family is from Central Wisconsin.
They are near the Appleton area.
Every year, we travel back and forth.  So I'm not disconnected from my father's family.
I have a connection with them.  And a sister who's adopted.
She picked up sign language as well.  I don't know, maybe because she was young and it was easy for her to pick up.
My dad was the last one to learn sign language.
So he goes on to talk about his really good friend, they talk politics and things like that.
He talks about getting his motorcycle license and how exciting it was for that to happen.
He talks about traveling internationally and what that's like as a deaf person.
So, this is talking about how they instructed him what to do during his motorcycle test.
So, again, just some of those questions that parents might have, like, will my child learn to drive?  If I don't give them audition, does that limit them in what they can do?  And we just really wanted to highlight that experience that that's not true, that that's a myth.
So, this is Madeline and her mom is in the office, so we'll let you see Madeline.
And I'm only going to so little snippets going forward, you get the sense of what it is, because we're running out of time.  
[Pause].  
[Video played with captions]. 
>> ELIZABETH SEELIGER:  And Madeline is gainfully employed, right?  [Chuckles].
Okay.  So that's Madeline, she grew up hard of hearing, has two hearing aids.  She goes on to talk a lot about sports and how she was an advocate for herself as an athlete and how her family influenced her ability to be a good and solid advocate.
This is Patrick.  Patrick went to the Deaf Olympics and definitely identifies as an athlete, so we're gonna ‑‑ whoops ‑‑ I'm going to actually skip along.
I think we're doing pretty good of our timing with those intros, I don't think I have to make a lot of adjustments, so you don't have to do that.
Patrick is a student athlete, he won a gold medal at the 2018 Deaf Olympics and he will talk about his close connection to people around him and how sports has impacted his life.  
[Video played with captions]. 
>> ELIZABETH SEELIGER:  Okay.  Just to give you a little sense of who Patrick is.
This is Ben.  You already saw him, he's the one who introduced the video, so I'm just gonna show you that he talks about travel and going to his homecoming dance, which I think is really cute, because again, I think it just gives an idea of normalcy in life.
I think that starts at 2:18. 
[Video played with captions]. 
>> ELIZABETH SEELIGER:  Oh, actually, I don't want to use that part ‑‑ 
[Video played with captions]. 
>> ELIZABETH SEELIGER:  So this little snippet there for you; they're a cool family.
Okay.  So, again, I said this is a work in progress.
Kaitlin's video is not embedded yet, but I want you to see Kaitlin.  Kaitlin went to a School for the Deaf in Wisconsin and talks about her life aspirations and shares her story of how she became deaf, so she was a late ‑‑ one of our late.... what am I trying to say?  Not identify late ‑‑ late onset, there we go.  
[Video played with captions]. 
>> ELIZABETH SEELIGER:  She's talking about her experience at the School for the Deaf.  
[Video played with captions].  
>> ELIZABETH SEELIGER:  Okay.  So that just gives you a smattering of the videos that are available.
I wanted to come back to this.  And I know we're almost out of time.
So I just wanted to let you know what we're thinking about these videos.
So we really want to recruit and film additional young adults with an increased focus on diversity.  Obviously there are not a lot of people of color represented in our videos.  We know that every life experience is different and we just want to represent kind of different ideas of success, like if we could find kids who are doing really well in the trades, if we can find kids who are doing really well, like, just talking about sort of what makes them happy so that we understand there is a lack of diversity in our videos right now, and it's definitely an area that we're focusing on.
Meredith, I must not be a terrible person to work with because she keeps coming back. 
[Laughter]. 
>> ELIZABETH SEELIGER:  So I think we're going to finish those ASL and voice‑overs.
I mentioned that Ben really wants this to be ‑‑ he talks about a day that he spent at the Boys and Girls Club being introduced to what it was like to have a Big Brother, like in the Big Brother, Big Sister program and turn this into a peer mentorship program.  He got into Stanford, so he's going to be in college [chuckles] and I think you'll have a different idea of busy once you're there, but we can keep talking.
But I do think there's opportunities for a Zoom setup or kind of a peer, like a peer group facilitated, so we're still talking about what that could look like, where we could kind of train them as peer mentors and we could make matches through technology.
And then we need to, like, get them out into the world.  And obviously these are not proprietary, we want them to be utilized, so if this is a resource that you think would be helpful in your state, please contact me and let me know.
And when they're out there in the world, we can make sure that they're available to you, okay?
Any questions?  I know I have, like, a minute.  Yeah?  
>> [Away from microphone and unable to clearly hear]. 
>> ELIZABETH SEELIGER:  Well, speak up and if I need to, I'll repeat the question. 
>> You'll need to repeat the question for the captioner.  
>> [Away from microphone and unable to clearly hear]. 
>> ELIZABETH SEELIGER:  So the question was have we thought about making this into a video podcast?  I could nerd out with you all day about that. 
[Laughter]. 
>> ELIZABETH SEELIGER:  And I think I would be totally open to that, that would be a great next step. 
>> [Away from microphone and unable to clearly hear]. 
>> ELIZABETH SEELIGER:  Oh my gosh!  
[Laughter]. 
>> ELIZABETH SEELIGER:  So I'll be getting your contact information before we leave.
Any other questions or thoughts about this?
[No response]. 
>> ELIZABETH SEELIGER:  Nope?  Oh, yeah?  
>> [Away from microphone and unable to clearly hear]. 
>> ELIZABETH SEELIGER:  Great.  Oh, good, I'm glad to hear that.
So she just said, as a parent she thinks this is a valuable resource.  Thank you, that's all validating when you spend time on a project to know that it's actually useful.
Yeah?  
>> [Away from microphone and unable to clearly hear]. 
>> ELIZABETH SEELIGER:  Wonderful.  So it would be a good resource for other kids.
So, I mean, I've crowd sourced your feedback today and I've crowd sourced your reading capacity.  But if you have kids that you ‑‑ I mean, this doesn't have to just live in Wisconsin, this is something that can be produced anywhere, so if you have kids that you think would make a good story teller that you think should be highlighted, I think that this is, like, something we can collaborate on in different states and create this video library of kids and, like, a story board and I think that would be really cool.
I had to get over how awkward they are but kids are just awkward. 
[Laughter]. 
>> ELIZABETH SEELIGER:  And I wanted to fine tune them but that's how kids talk or communicate.
Okay.  Any other last thoughts?
[No response]. 
>> ELIZABETH SEELIGER:  Okay.  Then I'm going to get off the stage and let my friend Lylis come up.
Thank you for your time.  
[Applause].
[End of session].  

** Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings. **