REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"Lessons To Learn From Deaf College Students:  
A Panel Presentation" 
Room:  Vienna
Tuesday, March 5, 2019
11:00 a.m. ‑ 12:00 p.m. CT

REMOTE CART CAPTIONING PROVIDED BY:
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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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>> Okay, everybody, hello.  We are ready to start.  Nice to see all of you here this morning.
Of course we have some parents and some professionals from the field.  We're here to see the results of your hard work.
These children went through your early intervention systems back in the day, so we'll see what works and what doesn't work straight from the horse's mouth today.
We have a panel of college students.  And we're here to learn from them today.
We're going to ask each of the panel members to introduce themselves, where they're from, their major, and if they're a senior, what their future plans are.
After we have the introductions, we have a few questions that we will be posting for you to see that the students will be answering, and then we'll leave it open for questions and answers.
So we'll go ahead and start with you, Ralin. 
>> Hello, my name is Ralin [chuckles], I'm a student at Gallaudet University, I'm Deaf.  ASL is my native language, so that's the language that I will be using to speak for the rest of the presentation.  
[Pause].  
>> And then my major is I am a senior at Gallaudet University and I will be graduating December with a double major, sociology and communication studies, I have a minor in ASL and Deaf studies.  I was born in Minnesota, went to the School for the Deaf, graduated high school in Indiana School for the Deaf.
And what else did you need?  
>> We'll ask you questions more a little bit later.  Great. 
>> Hi, my name is Ally, I am a senior, and I am now going to sign.
I do prefer American Sign Language, ASL is my preferred language, mode of communication, because spoken English is really a tool for me.  I am a senior, my major, self‑designed, I'm majoring in bilingual outreach studies, working with families and children and my goal is to work with the cognitive language delay, because for many years I have worked with children with mainstream environment.  I am the product of mainstream environment myself and that's my fascination. 
>> Hello, everyone, I'm Gabby, I will graduate this May.  I grew up speaking, but I also grew up signing.  I'm going to stop talking now because I prefer to sign.
Hello, everyone, so I grew up in Iowa, majored in biology and chemistry, minor in general studies and public health.
I do want to get involved in intervention.  I never really realized that public health and early intervention had such a great connection, so that's something I'm very passionate about.
I really grew up signing and speaking at the same time.  My sisters and brothers are deaf.  My sister was language deprived and so my early intervention specialist really supported American Sign Language so I want to indicate that I am a good communicator visually and auditorily, but I prefer ASL.  
[Pause]. 
>> American Sign Language is my true language and I can explain everything in American Sign Language, so that helps me with my English writing as well, so having ASL and English, both of them are really excellent tools for me.  
>> Hello, everyone, my name is Brianna, I go by Bri, I am a third year student majoring in deaf studies and my goal is to advocate for deaf children and give them a path.  My family is a hearing family but chose to expose me to ASL in my youth.  
>> Just making sure [tapping microphone] just making sure, my name is Katy, I am deaf‑blind and I am going to sign, I can't speak and sign at the same time, it's so confusing, so I will go ahead and sign now.
I'm a fourth year student at Gallaudet University, I'm majoring in social work and I have a minor in psychology.  I will be graduating this May ‑‑ finally! ‑‑ I'm looking forward to it and beyond that, I would like to go to grad school, I was accepted to the Gallaudet master's social work program and in the future, I'm not sure exactly what I will do with that but I know I want to work in some sort of organization, probably with deaf‑blind folks.
I'm also Latin‑ex and I have an interest in looking at that identity and that's what I'm looking forward to in the future.
>> Good morning, everyone, my name is Shelby Dean, I am not a Gallaudet student but formerly was one and I remember sitting with these students about five years ago as a Gallaudet student.
I currently work at the university as a football coach.  I am also involved with a lot of different activities on campus.
So I have a full‑time job in the Admissions Office, I travel the country speaking to different programs, be they mainstream programs or deaf schools, about the benefits of coming to Gallaudet.
So thanks all for coming to this workshop today.  
>> Wonderful, guys.
So now we're going to go through the first four questions.  I'll go through them.  Some of you have already answered some of these questions, but these just help you ‑‑ help the audience know who you are a little bit better.  
>> All right.  Are you ready for the whole kit and caboodle?  I'm from a deaf family, my sister is here and she is deaf.
My parents were very strongly involved in advocacy in the state of Minnesota.  My educational experience, I went to the Metro Deaf School which is the first school for the deaf in Minnesota, it's a day school.
I was there till 9th grade.  And I realized I wanted more of a challenge.  I wanted to be with peers and have a bigger class size.  Metro School was great but it was rather small.
So, I was offered to go to my public school.  And I didn't want that, because I wanted a signing environment.  I expressed myself in American Sign Language, I think I'm funnier in American Sign Language than I am in English, and I went to the Indiana School for the Deaf.
My family signs at home 100% of the time.  Also I can speak and hear a little bit, so can my sister, but everything I've always known is American Sign Language, it's my native language, I can't imagine life without it.
Am I satisfied with the quality of communication with my family?  Absolutely.  Without that, I wouldn't be where I would.
Of course my extended family can hear and my bond with them is actually not at the level of the bond that I have with my immediate family.  
[Pause]. 
>> So let's go ahead and do all four, not just the first three.  
>> I needed to have captions on the TV.  I wasn't able to understand anything without captioning.
I didn't have interpreters often in my life except for out in the community, like at doctor's appointment, because I was in a deaf classroom with teachers who use sign.
My education experience was fantastic!  Because of my parents.  I don't think that I would have gotten as far as I have gotten without my parents.  They advocated for me, they put English words on everything in the house.  When I was looking at the dishwasher, I didn't know the sign for it or the oven, I didn't know the name of it, I would pull it down and say "What is this?"  So they paired English with sign throughout the house.  And my parents are the reason why I am here today.  
>> Hi, everyone.  Again, I grew up in a hearing family.  None of them used American Sign Language.
When I was growing up, I used ‑‑ signed exact English and spoken English as a communication modality.
I was in a small town, but we did have a small deaf program that was run in the school district there, about two or three deaf students ‑‑ about 23 deaf students.
So generally my experience as a child was one of using spoken English, but eventually I started to sign.
At the age of 15, I moved to a different high school, which was a public high school.  I'm from Oregon ‑‑ Washington State which I forgot to add at the beginning, but I moved to a public high school in Oregon.
In my previous experience, I had had a lot of bullying from other students in the school district in which I was in.  But I didn't find that in my new school.
There was some signing in that environment as well.  I had never had an interpreter in the past, so this was a completely new experience, much more open to me and something that I appreciated having access to ASL.
It was like a light finally went off for me.  That I finally understood the material that was being presented.
And I actually started experiencing some remorse about my past, that I hadn't had that type of access, that I was always relying on lip reading.
And I realized that I was delayed in understanding the content that I should have been learning at school because of the lack of language access that I had.
So I had to really play catch up in this new environment.
[Pause].  
>> I realized that even though I could speak English pretty well, I couldn't understand it at the same level, and so ASL provided me an access to the material that was new and more engaging for me.
I love my hearing family.  That's not to say that I don't.  I don't necessarily have deep and meaningful conversations with them, though.
I have two sisters.  And each of them signs a little bit.  So because of that, I'm a little closer to them.  They've taken the time to learn how to interpret for me when we're in family gatherings and I'm missing out on some of the information that people are talking about.
My mom did learn some sign, but she thought that because I spoke so well, I didn't need to access anything through ASL.
But I really find that for myself, accessing information through visual language is much more effective.  
>> Do you want to add if you had any technologies that you used to support your communication?  
>> I used hearing aids growing up.  I also knew about closed captioning, but at the time you had to purchase a closed captioning box and that type of technology was too expensive for my family.
We didn't use interpreters, as I mentioned, I grew up using SEE and not using interpreters in school.
It wasn't until I got into college that cell phones took off and computers on a personal level as well, so I was sort of the typewriter‑type technology level in high school than some of my peers sitting here today. 
>> So, my background is a little interesting, I'm going to kind of do my best to be clear about it.
My family is mixed deaf and hearing.  My parents are hearing.  And I'm the last child, I'm the baby of the family.
So there's a total of ten kids.  My dad remarried and so there were five kids, there was one deaf, and there's five of us who are hearing in my immediate family, and so anyway.....
I was the baby.  And I was lucky that I was exposed to ASL very young.  When I was born, I could hear, I had a mild hearing loss, but then about two or so, I don't know.... I mean, my older sister was really my role model and encouraged me to get language and I was very resistant to sign language when I was younger, because my parents were telling me things like, you know, speech is better, hearing is better, those sorts of things, and we want you to be able to interact with your hearing peers better and my family members better.
So I wanted to be the same as them, so that's why I spoke all the time.
I did have a good relationship, but then I would end up interpreting for my brothers and sisters.  We were never 100% culturally one or the other.  I ended up interpreting a lot and it was very tiring and very difficult for me, having to listen and speak and sign and produce, so that was a challenge as I was growing up.
My educational experience, I went to preschool, I had a FM system so I had everything, all the technology.  I did not have an interpreter.  And then my hearing loss became worse.  We needed an interpreter, they brought somebody in for me.  And then there was another boy who also had a hearing loss.
And so with having only one of us was difficult for the district, but having two of us, it made it easier to provide those services, but that all began for me at a very young age.
Then that boy transferred to a different district, the interpreter didn't want to stick around and I was back struggling using a SEE interpreter and my brothers and sisters used sign language and using SEE was difficult and I wanted to go to another school but my parents didn't want me to do that, I spoke well, and I didn't want to go there, however, I would create, like, I was actually deaf so that I could be convinced to go to a deaf school, so I made it into the deaf school and got there with my siblings, but at the residential school, there was a lot of language and I realized I was behind on language.
It's not anybody's fault.  I get it.
So I did go to the mainstream school at the same time I was at the residential school and I was able to do both of those residential opportunities that was good for me academically and socially for my peers and both of those things came to me which was wonderful.
My family communication, I spoke a lot with them and I would have to switch hats and become the interpreter and do that a lot.
I am severely to profoundly deaf now and so I started out mild and although something is different.  Although it's fine, I'm happy, I'm great, I can't hear, I'm tired!  I will say that tinnitus sound, the ringing in the ear, I really hated that and now that's much less and I'm very excited about that, that's one benefit!  Really, tinnitus is a terrible thing.
I guess, I do grieve my brothers and sisters and doing something I couldn't do, we never had 100% familial parent protection and learned about.  I learned about jokes and humor and irony later in life and I learned that later and I didn't understand why jokes were funny and the news and things like that.
But when I went to the residential program, I could see all of that and it was much more interesting.
I do use hearing aids.  I do use the microphone/FM system stuff.  Interpreters, I love working with the interpreters, I have access to the information then.
The residential school teaching signing was wonderful, I had access there.  Deaf role models, my sister, she is my first deaf person that I've ever meant and she ingrained to me do you want to be a smart deafened person?  Start reading.  I don't want to read.  I don't care, start reading!  So every night she would make me read, force me to read, and I thank her.  She would be my dictionary, I would look at a word, ask her what it means, she would tell me, I get it, it was perfect, I get the word, it was perfect.
So I think those are all those questions.  Okay, thanks. 
[Laughter]. 
>> Well.... my life has been a bit complex, so here we go.
All my family can hear.  I'm the only who can ‑‑ who is deaf who cannot hear or speak.  I use American Sign Language.  Unfortunately, my parents do not sign.
I have one sister and two sisters‑in‑law who supports me and inspires me.
The communication hasn't been perfect, I feel overlooked at times, I feel left out, but I want to be involved.  And even if I ask to be involved, I'm left out.
When my mother found out I was deaf, she looked at different schools.  I went to a mainstream school in San Diego, California, where I was born and raised.
I learned American Sign Language.  I had a deaf teacher where I really felt my first connection.  And I had some deaf peers in that program as well.
But when I would go home, there was such a struggle to communicate.  That was a problem.  I wasn't able to communicate in any meaningful way with my family.
I felt so happy and able to be me when I was at school or communicating with deaf people and not at home.
In middle school, with the angst I was experiencing, I asked my parents if I could go to the School for the Deaf, and they said I could not.
After nine years, I realized that it was enough.  My sister‑in‑law saw the frustrations and the problems I was having and the oppression I was experiencing both at school and at home.
She said why don't you go to Gallaudet University?
I wasn't sure about the education level at Gallaudet ‑‑ or they weren't sure about the education level at Gallaudet, and even though that that was my dream, I was being told that it wasn't the best place for me to go.
So I asked my sister‑in‑law if I should continue in a mainstream program?  If I should go to a School for the Deaf?
I just felt so lost.
I talked to my mom.  And then my mom was on board.  She said you should go to a School for the Deaf.  And I'm, like, hey, what are you doing, mom?!  You've been telling me I can't and all of a sudden she said I could, and that's because the teacher had reached out to my mother and told my mother how poor the education was at a School for the Deaf.
And my sister‑in‑law and my mother and myself went to the California School for the Deaf in Riverside, CSDR, we went for a visit and I was a junior at the time and the deaf teachers and communication access was exactly what I needed.  It was the perfect fit.
I begged my mother.  She supported me, after we went on the visit, which was exciting.
I went to youth leadership camp once I went to CSDR, I finally found my identity as a deaf person.  I had been struggling with who I was for all of this time.
So I'm really grateful for youth leadership camp, for the stimulation, for the openness, for the ability to communicate and be myself.
So, I transferred to California School for the Deaf in Riverside.
And one, Allison Morano, a person who is a deaf teacher and bilingual instructor, she was telling me to go to Gallaudet, I thought I would just finish high school and go and get a job.
I was told in my previous school, I would never be able to do anything beyond high school.
Alissa encouraged me to apply and I was so resistant because of what had been fed to me about my limitations.
I did apply and then I met Beth when I went on a visit.  Actually, she was at Fremont and I met her.
She also encouraged me to attend Gallaudet.  And I've been at Gallaudet.  I wouldn't be here without Alissa and my sister‑in‑law and those that could believe I could do something beyond what I was always told that I couldn't do.
I wasn't satisfied with my communication.  I struggle with my family even to this point.
My parents still don't sign, even though they've seen the transition that I've had in moving to a School for the Deaf and Gallaudet University.
I use closed caption on the TV.  I use notebook computer.  
[Pause]. 
>> Old fashion technology, paper and pencil, interpreters.  And that's it.  
>> So I'll talk a little bit about my family as well.  I am the only deaf‑blind member of my family in, like, the entire family history, generationally, there is no other deaf‑blind individual, no other deaf individual.
I was not identified until 19.  I am now 22, soon to be 23, so I grew up deaf, but not identified as deaf‑blind until just very recently.  Which is ironic.
At the age of 19, I found out that I had Usher syndrome Type II and that really changed everything.
But, of course, I met, like, if you had met me three years ago, you would never have known that I was deaf‑blind because I would never have admitted that, I would never have said I'm deaf, that's it, that was all.
I hadn't figured out my identity really yet.  I would have told you nope, I'm deaf, I'm not deaf‑blind, even though people would say that maybe you need to have things that were provided, like CDIs and pro‑tactile and interpreting and I learned about those things, I learned about pro‑tactile in my class, oh my goodness!  Oh my goodness!  What a change!
As I said, my family doesn't sign fluently.  When I was younger, I would go to the day program, the deaf day program, so there was some sign language being learned.
My mom learned some sign language as well because she took some sign language classes.  I would call them sign language class, not really American Sign Language.
We went to the early intervention program, you know, for ‑‑ through the EI system.
My parents were taking classes for a couple of hours to learn some sign language I think once or twice a week.
They did pick up some signs, that's true, two of my sisters, my older sisters were also signing.
So, that's when I began to sign as well.
Plus oral speech therapy, all that stuff, so I grew up doing that, speaking, all that kind of stuff, so that's how I grew up, speaking.  More speech therapy.
My deaf identity with the more speech therapy I got sorta went away, I started not signing at home at all, I only wanted to speak with them, so then my skills in sign language went.... 
[Pause]. 
>> Everybody's skills in the family and mine just went down.
So then we went to a little bit of sim com using voice and sign at the same time and that's how I grew up.  Not at home.  Out in the community or at the mall, I wouldn't sign, I would only speak.  Because I wanted to be the same as everybody around me.
I was a little bit embarrassed about the Deaf identity.  And I had no support.  The school said, you know, we have academics for you, but where's my identity support?
Got into Gallaudet University, another huge change, culture shock, captioning, American Sign Language interpreters, everybody signing, technology available, amazing!  Nobody is using their voice. 
It's where I found my deaf identity and it was still a little difficult, because I was not really fully deaf.  I'm not sure where I had been my whole life, I ignored my sign language, I preferred to focus on the hearing world so long.
Now I'm switching over to Gallaudet University and into the Deaf world and I was awkward about that.
I love the Deaf world, I support that 100%, but it was a challenge for me.
Then for technologies, yeah, I do use those, I grew up with a cochlear implant, I was implanted at the age of two and, again, as I said, I spoke and everything, so.....
I was in school until.... 
[Pause]. 
>> Mainstream until I went to Gallaudet University.  Sim coming, I had to learn how to stop doing that at Gallaudet University, I know people disagree with that but my opinion is I want to stop doing that.
I asked to go to the residential school before and was told no, it's too far away, I come from a Hispanic family, values of the family and closeness is very important to us, we want to support each other and be there for each other, so ironically, though, they're not into supporting a deaf person. 
[Laughter]. 
>> They love me, yes, yes, yes, they do, however.... there's parts of me they couldn't fully support, they didn't know how to support, but at Gallaudet University I realized that sign language is very important and it's much better for me to sign and I want my family to come and use American Sign Language with me but even today they still expect me to talk.
My family is well.  They're Hispanic so they use Spanish, so Spanish language is the language at home and it's very difficult for me.  My step‑dad doesn't understand any English at all, so for me, English, American Sign Language, Spanish, my Spanish itself is not that great, I will say, but.....
I keep telling them please teach me Spanish, they say no, they want me to focus on English and spoken English, so that was a challenge.
So it's been tough growing up.  Communication has been a little difficulty.  That's why with my friends, I do what I could.
When Gallaudet University goes on break and you have to go home, I feel depressed when I have to go home, I don't want to go home, I can't wait for break to be over and for school to start again, because I'd rather be at school, because the school is my world.  Home is not my world.  I don't feel the same there.
So I do have a cochlear implant, as I said.  Not one, but two.  Ironically I just use one right now, but I do have a second one that I don't use.
And so as an adult, I just want to experience the options that are best for me.
Cochlear implant gives me a lot of sound input that I have to practice with and my patience has kind of dwindled in doing that at this point as an adult.
But if I think about them, encourage as a younger age, not necessarily as a baby, but maybe as a younger adult, that's a different story we can talk about later.
But that's kind of my history right there.  
>> So again I'm Shelby.  I grew up in Colorado.  It was in a mainstreaming program, and my entire family is a hearing family who does not know sign language.
I grew up in an oral program without an interpreter.  I had no deaf access or ASL instruction throughout school.
I grew up speaking.  I guess I could speak pretty well, but I had always sort of preferred visual communication.
I was exposed to Deaf culture pretty late, similarly like other members of the panel, really the first time I went to Gallaudet University.
I attended the Jump Start Program, that's a program for deaf and hard‑of‑hearing students who don't know American Sign Language or much about Deaf culture to arrive on campus about four weeks early to learn American Sign Language, to learn basic sign, like where is the bathroom and how do I fingerspell my name, I didn't know any sign language when I arrived at D.C. and wow, look at what happened.
I used a FM system in the class, I would often sit in front of the class because of that to gain the most access to spoken language, but I still missed out a lot.  I was far behind my hearing peers, I didn't really understand what was going on in class discussion and felt like I was missing out.
I missed out especially a lot on English class because I was going to speech therapy during those periods, so I was, you know, learning how to speak, but I was missing out on the instruction about the language that I was learning how to speak.
In high school, we realized, of course, that my English was far behind my peers, which of course is not a surprise, and so we needed some intervention in order for me to catch up.
I think for me going to Gallaudet was the best decision of my life.  Fortunately for you ‑‑ for me, my family completed ‑‑ completely supported that decision.
My mom had found out about Gallaudet University and read up the programs and thought that it would be a really good opportunity for me, socially especially, to go to a place where people were deaf like me.
I had never met another deaf person until that point.  I was in an environment by myself among hearing peers and so I never felt that experience of living in a Deaf world, of people who had had similar experiences to me, even though there had been some programs about ten minutes away from me from where I grew up.
For me, I guess talking about my communication with my family, I would say it's pretty good.  I can still talk and hear fairly well, especially in small groups or when someone is looking directly at me.
In larger groups where there's a lot of conversation, it tends to take me a little longer to understand what's going on, but I generally can follow.
My parents have become very big supporters of the disability rights community, they have become involved in local government and different communities to ensure that there is access for children growing up in situations like mine, in Colorado, where they can have some deaf mentors.
There was no Deaf Mentor Program in the '90s when I was growing up, but now fortunately there are deaf mentorship programs where we can help expose families to the ways of being deaf and hard of hearing as adults, whether that be American Sign Language or language deprivation and how to catch up children in developing their language skills.
I've also, of course, developed my identity as a Deaf person and that's really changed my outlook on who it is that I am, being able to get into that culture.
I wish that I had had that much earlier in my life.  I don't blame my parents for that, they were certainly in a situation of un‑knowledge of what is out there, but I think that we can all learn from that and make sure that we expose children at a young age to the things that will help them grow.  
>> Thank you so much.
It's interesting to hear six different stories.  And I'm sure we have many, many more stories from people in the audience.
I'm going to show you the next two questions, and I think we have 25 minutes left, so we're good on time.
I'll show you the next two questions.  I want you to feel free to add a little bit more, because I'm sure that things have popped into your mind.  
Ally is saying yes, definitely.  
Since you answered your question, so we'll let you add on, so we'll take a moment with these two questions.
If you thought of something that you wanted to elaborate on from the past four questions, please feel free.  And Ally is saying let me take a minute to refresh my memory exactly what I want to say. 
>> Well, I have a comment.  As I mentioned, my family communication growing up, but also I mention my friends, my peers, there were two different ways to communicate.  With my family, I was able to communicate, with my friends, I was able to sign, and so ASL with my ‑‑ well, what am I trying to say?  Wait a minute.... sorry.... SEE?  Do you SEE?  
[Laughter]. 
>> Signing and listening just makes my brain go crazy!  Honestly I have to do one thing at one time.  It's difficult to do all of this at the same time!
Okay, so deaf‑blind individual, now, I like this, because the family doesn't know how to do tactile or anything, they won't understand what a CDI is, a certified deaf interpreter, that kind of stuff, PT, they don't understand, I had no idea what was going on, trying to explain that and expose my identity to the family is really challenging, they still don't get it.
But my friends, some of them actually are thrilled to death to me, I mean, really, I love my friends, some know tactile, some know pro‑tactile and they're picking up more from me and that experience I learned why I wanted to have a CDI, a CDI, pro‑tactile, I wanted to do that well, and, for example, what Bri was talking about ‑‑ Bri is my good friend, she knows what she's talking about ‑‑ and I have a lot of good friends, and darkness is difficult for me, I can't see, and sometimes even just instead of waving to get your attention in a dark room, having contact is person, my friends will get me in on the conversation. 
[Pause]. 
>> They don't treat me as if I'm something fragile and going to break or with kid gloves, they know how to communicate with me.
Sometimes I'll even ask.... um.... because a deaf‑blind individual, we have different perspectives, we don't mind the touch, we would prefer the touch.  Some people have different relationships with that than I do, some people don't like that.
I don't like when people take over control of me.  I am an adult.  Treat me as an adult.  That's what I want.
Don't oppress me because I'm deaf‑blind and deaf and all of that.  So please don't do those things.
And my friends already know that.
They don't want to do for me.
I will ask, "Would you mind helping me and doing something with me?  Would you help me do whatever?"  I will make those decisions.  In the beginning it was awkward, I had to tell my friends don't just take over for me, I can ask what I need when I need it.
Every deaf person is a different person, but when you are working with them, when you're meeting a person who is deaf or deaf‑blind, ask them what their preferences are.  Don't assume they're all the same, because they're not going to be, that's just a little tidbit I would put out there for you. 
>> Can I add something?  Do you want to go, Ally?  Okay.  
>> So I want to talk a little bit more about my family.  I have five siblings.  I'm the baby.  So there was no signing that happened in my house.
I didn't have any language access.  I didn't have a way to communicate until I was seven.
That's some severe language deprivation.
Out of the blue, I was able to pick up sign rather quickly and catch up from the deficit.
And people ask me if my parents were deaf and I told them they weren't, they couldn't believe it.  And especially since I didn't learn American Sign Language until I was seven or eight.
I have other friends who have families that didn't communicate with them and they really struggled to learn language.  It was very difficult for them.
I had a different experience, fortunately, for myself.
I am a person who experienced grave language deprivation, but fortunately for me I was able to close that gap.
Again, my family didn't learn sign.  My sister‑in‑law learned new sign.  And I identified her as my mother instead of my own mother.  I bonded with her.  And she has done everything for me and invested so much time and energy into me.  So I just wanted to add that clarification.  
>> Let's do one more clarification and then we'll go to the final two questions, and then open it.
I think we have ten minutes left, about, right?  20 minutes?  Ten, okay, we have ten minutes left.  
>> Okay.  I'll be quick with my comment then.
When I was three, I was found to be deaf, diagnosed, and I was profoundly deaf at the time in both ears.
I got hearing aids at the age of four and I was enrolled in preschool at that point.
My parents were the type of parents who would listen to any person in a white coat who told them what to do, figuring that they were the wisest about how it is that I should become a deaf person.
But unfortunately there were no other resources available to them or no other voices that they listened to.  
So I encourage all of you to gather as many resources that you can and not to make the choice of language for these children.
ASL is a language.  English is a language.  There are other communication tools, like cued speech, SEE, other resources that we have that are non‑linguistic that we can provide the students to use.  
[Pause]. 
>> And so we have all of these communication tools that we need to allow children to choose for themselves and guide their own destiny and guide you as parents and you as practitioners in finding out what works best for them, right, not to make a language choice early on for them.
For me, it worked, to speak English.  And I'm happy to have done that.  And I was pretty good at reading lips.
But I realized, as I mentioned before, that I was missing out on a lot of information, that I didn't have an equitable experience compared to my hearing peers.
So the goal in our field should be able to reduce language deprivation and cognitive delay because of that language deprivation.
At the Clerc Center, they have a lot of strong resources that I encourage you to check out.  They're posted on their website there at the Clerc Center and those are some wonderful things that you can use in your practice. 
>> Okay.  I think I'm actually going to open it up for questions from the audience, so feel free to ask specific individuals, it doesn't have to be a question geared towards the entirety of the group.
Wonderful, so we have 20 minutes left.  Do we have any brave souls?
>> Okay.  I am a mother, I have a deaf son ‑‑ oh, maybe I should just come up front.  
[Pause]. 
>> Sorry.  My sign isn't the best, but I'm going to try my best.  I have a son who is deaf and is six‑years‑old currently, will be seven soon.
My concern is that not all parents learn sign for their deaf child.
I do, and I serve on five boards at home.  But I'm becoming labeled as a "mom from hell."  
[Laughter]. 
>> Or the scary mom.  It's because I am not comfortable with the services that we've been receiving and the support that we've been receiving from the department.  We have a School for the Deaf and sometimes there are bullying that I'm receiving from deaf people or people that can hear in the community.
So my experience is actually fine, but I'm concerned for my son and how he can continue to advocate for himself and identify well as a deaf individual.
I just don't want him to feel bullied because of me and making sure he's involved as he is and not because of me. 
>> I can answer that question, my sister and I, when we were young, the school district said hmm.... your daughters are fine, they should go to a mainstream program because the deaf school is not a good fit.  My mom was a mom from hell too, she said no, I know what's good for my kids, there was a lot of back and forth on that one.
But I think really that made me speak out too.  And your son I think has a wonderful role model.  You've become ‑‑ let him speak out just like you speak out, which is great, like I did with my parents.
At the IEP meeting with kids, even though I was in first grade, my mother is, like, she is the person who this is for and she will be at the meeting, and my mom was pointing out that this is the bus person and this is the teacher and so really, that led me get through the IEP meetings and I ended up leading them on my own because my parents taught me how to do that, to advocate for that, and they wanted their children to do for themselves.
They did a great job.  I'm here, look.  So be a role model for your son.  That's awesome!  
>> That's really too. 
>> I would like to say my mom, too, advocated all the way, although she didn't sign or anything like that, but she did advocate for her kids, so continue doing what you're doing, I think that's important.
My mom did support me at the time when I was a junior getting ready to go to Riverside.  The department ‑‑ the district said no, they kept telling her no, but my mom said she is going to do this, we will figure this out, she now what I wanted and she knew what was best for me and even though we got pushback for that, all of the fighting was worth it in the end, I was finally allowed to do that and go there, it took a long time to do that but we were able to do that and my mom was wonderful in that even though communication is difficult for her, as I already mentioned, but she was wonderful, she allowed me to do that.
And I would encourage you, you're wonderful!  
>> So a lot of times when I talk about my sister, my sister fought really hard for me, my parents didn't so much.  My sister fought so hard for me and I'm so fortunate.
My parents ‑‑ I didn't feel like my parents cared about me, but my sister did.
I see my sister as my mom, even though she's not.
But it's because she took on that role of care and advocacy and she used her experience to fight for what was best for me.
If I was behind in something, she would make sure that I was on track.  And even though I was resistant to her in many different ways, she said, "You'll thank me later."  And I do!
I think deaf mentors in the state of Utah, we had experience with them.  I saw parents who cared about their kids.
I think that you can be an inspiration for others, not just your family.
Seeing people who work hard and then other families not knowing what to do, people can be matched up with you.
I think more and more parents getting involved is the best.
I think many parents are the parents from hell, just like you, and maybe they have the spirit of the parent from hell, they just don't know how to unleash it, so you can be a guide to them.  
>> A quick comment.  Don't give up.  Don't.
We had to work and we're still working really hard for deaf children today.
Remember yesterday there was the workshop, the plenary session about the burnout, right?
We can't afford to be burned out.  We have to continue to fight for our rights, so that ‑‑ we can't afford the burnout.
So if anybody in the profession, any of the parents, please don't give up, keep up the fight for your children, for all of us.  We're trying to meet every child's need.
And thank you for that!  
>> Thank you so much.  Thank you.  
>> I'm the mother of two deaf girls, 28 and 29, and I was also the mother from hell.  I'm still here!
And I remember when I had my first daughter.  The information I was given was very limited.  I knew what the experience of a deaf person was, but I was thinking, 90% of deaf children have parents who can hear, and that is when this field became my calling.  I knew I needed to be involved with early intervention and that's why you're here.  Your hearts are all in the right place.
So how can we spread the word?  How can we have the most reach?  Because we're all in this together.
>> Anymore questions from the audience?  
[Pause]. 
>> Sure.  
[Pause]. 
>> My question is specific about Usher syndrome Type II.  We learned one month ago that both of my children have Usher, and so now one is 4½, the other is 18 months.
So as a college student that experiences deaf‑blindness, what should I make sure I do now to help them as this progresses?  
>> Thank you for the question.  Thank you.
Really, that's inspiring that you asked me that question for deaf Usher's ‑‑ that's makes me so happy that somebody asked me about that!  That makes me so happy!  Look at this!
You're lucky that your kids found out early, not like me, I didn't find out until I was 19, so that was unfortunate because my whole life I had Usher's but I was never diagnosed with it, and my family didn't know it, they didn't realize it, they didn't have a chance to realize it, really.
My friends in college knew if, but nobody else did, and they would say do you have Usher's?  What do you mean?  No, I'm just deaf.  What?  You're always focused on one thing.  What's going on?  I'm.... okay.... okay.....
And of course my parents, even me, even myself, when I would see the doctor, if the doctor said you have Usher's, you know how that feels, there's a lot of feelings about that, because my whole life I missed things, I had eye doctors, I had glasses since I was five, we would ask the doctor but why is this not getting better?
With all of today's technology and everything, what's going on?!  Why is this?
I mean honestly we should have known something before this, but we didn't.  They just said that she can't.
So really, I just tried everything that was out there and I just let it all just suck and whatever, it was out there, it wasn't diagnosed.
With your children, they are going to experience a lot of emotion around that, there will be a lot of bullying, people telling them they can't, there will be a lot of that going on.
But believe in your children.  Support them.  Ask them, what do you want?  How can I support you?
Because if you listen to the child, the child will be able to express more if you ask them more questions.  If the parents do for rather than teaching how to ask for, it's different for the children in that situation.  They will be afraid to ask for.  Lead them.  Don't let them take passively.  They have a voice, give them the rights.  In education, make them passionate about education.
Find a good doctor, that would be something.  Don't find a doctor that gives you bad experience like I had, find a good one.  If you have to go to a different state, a different clinic, whatever, find one that will help you with Usher's.
They can go to the residential school.  Find out what the resources are, we didn't have them when I was growing up, we didn't know about them, which is fine.
When I got into Gallaudet and ASL, I would encourage the use of CDIs as interpreters. 
The first time I had a CDI, I didn't really have a CDI for about three years and then finally when I got CDI with PT, I realized how much information I was losing, with pro‑tactile and sign language combined, it give me access I didn't have before, I built my identity, I learned about who I am.
My syndrome myself, I don't have to rely solely on tactile language, I can work with pro‑tactile and sign language.
I'm still awkward and still learning a whole bunch about the resources, but the exposure to the resources is key.
The kids will resist at times, that's fine, let them disclose what they want at some point, because they will.
Don't tell them, you know, that they have to do ABC/XYZ, let them make those decisions.
Encourage them as much as you can.
The kids will be able to at some point express what they need very well with your support.
And really, honestly, thanks for asking that we.
I'm here to ‑‑ please get ahold of me, let's share contact information or whatever we can do, because I really appreciate that.  Please.  Thank you.  
>> And if you wouldn't mind, if I could add to that.  You know, we're all here because of language, right, language screening, hearing screening, identification.
And Usher syndrome is another thing that maybe we should be screening for, right?  That's another syndrome that's affecting our deaf children.
So let's make sure that our health systems are checking for Usher syndrome, that they're doing vision screenings as well that they're doing newborn hearing screenings so we don't have children waiting until they're 21 to find out they have Usher syndrome. 
>> I want to make sure the audience understands what a certified deaf interpreter is.  Is everybody familiar with a certified deaf interpreter?  It depends on the deaf‑blind person's needs.
There's a national organization of the deaf‑blind, so there are so many resources there that you can have access to.
I know that we have two more quick questions, somebody from on the left side of the audience, did that person leave?
We have five minutes left.  Yes, mmm‑hmm?  
[Pause]. 
>> I know you just briefly touched on the medical community and I wanted to know, as you guys were growing up, how you felt supported by audiology or how you could have felt more supported by audiology?
And if you didn't, what changes you would have wanted when you were growing up?  
[Pause]. 
>> Okay.  So, on my experience with audiology, I had an awful experience, I hate to say it.  I didn't feel supported at all.  They encouraged me to get an implant, which I didn't want.  I went to the audiologist regularly.
And my mom started seriously considering a cochlear implant for me.  And I said no.  And she's, like, no, come on!
So I went to an appointment to learn about it, because my mother persuaded me.
And when I said no, the audiologist was actually mad at me!  And berated me for not making the choice.
I don't actually have a cochlea.  I can't be implanted.  I can't hear.  I'm not going to be able to benefit from it.
So, the doctor kept talking about how they could find a cure for me.  I was nine at the time!  And I said I'm proud to be deaf.  And the audiologist was completely shut down by that statement and didn't want to have anything to do with me, left the room, and I never saw that audiologist again.  
[Pause].  
>> Growing up, my experience with audiologists would be that, you know, we would go and have appointments and they would often tell me that I would hear so well and that I could speak so well, and that they thought that that had something to do with why I was smart.
I want to make sure that we understand that hearing levels and speech ability has nothing to do with the intelligence of a person and so we need to divorce those concepts in the medical field.
Now I'm working with the first deaf audiologist in the field.  Audiology in a field is not an anti‑deaf field, it just needs to be ‑‑ we just need to reframe how we look at deaf children, especially those who are accepting different types of interventions. 
>> All right.  
>> I really wish my audiologist is or was here.  I can't see whether or not they are, I haven't seen them in 15 years.  I saw them recently and I had a very positive experience with my audiologist, who knew sign language and sat with me.  I lived in rural Iowa.
I didn't really have American Sign Language access, but that audiologist had trained in Minnesota and was able to talk to me about what my hearing aids were doing for me.
Never ‑‑ she never talked to me about needing to speak more or do something differently.  She asked what I wanted.
And I told her I was tired of the FM system, she told my dad, because I was afraid to tell my dad because he was so focused on me being able to hear.
And my audiologist really advocated for me and told my dad that the hearing I was receiving through my hearing aid device was enough and that a FM system wasn't necessary.
And because the advocacy that she gave to me, I was able to get what I needed.
Also, she spoke to me and not to my parents over me.
And she always gave me a choice.  
>> So at one point she mentioned that her aunt is an audiologist who is deaf as well.  Okay.  
>> So one last question.  
>> So just some feedback.  It's not so much of a question, I'm just interested in hearing your feedback.
I have a six‑year‑old who's hard of hearing and I have a four‑year‑old who's hearing and I have a 18 month old who's deaf, so we have a very diverse home.  We use a lot of English, my husband is a CODA, we use a lot of sign language.  I can't say we're ASL users, we would like to be, but we're not quite there yet.
Anyways, it's about my six‑year‑old.  He ‑‑ so he can understand sign language but he refuses to use it.
And actually he has said to me, mom, I don't want to sign anymore.
So hearing everything you guys have said, I find it very interesting that my hard‑of‑hearing son has made that bold statement with us.  He's very oral, he understands ‑‑ like, he speaks all the time, but I just am interested in any feedback you might have in orders to his not wanting to use sign language.
We told him that's fine, you don't have to sign to us but we're going to continue signing because your baby brother is deaf.  And we sign in the house.
It's a funny line to draw so any feedback in regards?  
>> May I?  
>> Actually we are being told that we're out of time, so let's just have one short response, one short response.  
>> I just have one quick little thing.
Maybe your oldest is interested in using sign language with the baby, his siblings, and maybe encourage him to read to them and play games and use it that way.  Maybe he needs a confidence booster, I'm not sure, but anything to interact with the siblings that's younger and encourage that as a team and support.  You could try that.  I don't know.  But try it.  
>> So as I mentioned before, I'm hard of hearing.  When I first was exposed to sign, I was a little resistant to using it and I felt like it was a weird communication modality at the time, but at one point, my cochlear implant had broken and so when I went back home, I was actually fully deaf.
And at that point, I realized that having ASL as a tool for myself was something useful, because there might be a time where I wouldn't be able to rely on spoken and language and technology may fail at that point and I saw ASL as a tool that was useful for me at that time.
My wife is also hard of hearing, so we have a family situation that's kind of similar to yours, you know, we can talk to some people, we can sign with others, and I think that there's nothing really wrong with that.
So there's maybe no easy answer.  Obviously with your deaf baby, you're going to want to continue to use sign language.
And maybe the older children will eventually see that as a useful tool for communication in the home.
But I think continuing to expose them to those languages is important.  
>> Okay.  Thank you to our wonderful panelists.  And the bottom line is family involvement is the key.
Thank you!  And have a great trip back home later today, for those of you who are traveling. 
>> Thank you all. 
>> Thank you.
[End of session].

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