Lisa Kovacs: "What Works for Your Child is What Makes the Choice Right!"

Take a listen to this engaging conversation with Lisa Kovacs.  Lisa is a parent and professional who has had over 21 years of experience parenting her own child as well as advocating and empowering other families who are on this journey.  Lisa gives us a peek into her own journey of raising a child who is deaf/hard of hearing and provides our listeners with thoughtful, reflective advice.  Lisa is also employed by the Hands and Voices organization which is a parent-driven organization that supports families with children who are deaf or hard of hearing with a motto of “what works for your child is what makes the choice right”.  Lisa is the current director of programs in which she provides support and oversight to the GBYS and ASTra programs, including start up support, as well as providing technical assistance and information coordination.  She is also the director of the FL3 program.    

To connect with Lisa or find out more information about Hands and Voices, visit the following links:  

lisakovacs@handsandvoices.org

Hands & Voices Chapter listing – https://handsandvoices.org/chapters/starts.htm  

Family-based Organizations/ Family leaders FL3 Center listing – https://handsandvoices.org/fl3/topics/fam-fam-support/need-support.html

H&V Facebook page - https://www.facebook.com/handsandvoices  

 Transcript: https://www.3cdigitalmedianetwork.com/empowear-audiology-podcast

For more information about Dr. Carrie Spangler- check out her LinkedIn at https://www.linkedin.com/in/carrie-spangler/

For transcripts of this episode- visit the podcast website at: https://empowearaudiology.buzzsprout.com

Transcript

00:00:00] Announcer: Welcome to empowEAR audiology with Dr. Carrie Spangler.
[00:00:14] Carrie: Welcome to the empowEAR audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.
[00:00:43] Thank you for listening, and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowEAR audiology Facebook group. Transcripts for each episode can be found at www dot three, the number three, C digital media network dot com under the empowEAR podcast tab.
[00:01:16] Now let's get started with today's episode. All right. I just want to welcome everyone to the empowEAR audiology podcast. I have a special guest with me today, Lisa Kovacs, and she, um, is part of the hands of voices, program. She's the director of programs and she provides support and oversight to the guide by your side and ASTRA programs, including startups support as well as providing technical assistance and information coordination.
[00:01:49] She is also director of the FL3 center, which was also going to talk about it a little bit later, but, um, I'm going to welcome Lisa today to the empowerEAR audiology podcast. Thank you Lisa for being a guest.
[00:02:04] Lisa: It's so great to be here with you, Carrie. Thanks for having me.
[00:02:08] Carrie: Yes. I was just trying to think about how we connected and I want to say that we connected in Columbus, is that right?
[00:02:17] Well,
[00:02:19] Lisa: I think you're right. I think I, I think I met you through campUS.
[00:02:23] Carrie: Yeah, so campus or that overnight camp. Um, and I think you were one of our guest speakers for the parent panel that year. And you came with your son, maybe that first year, and then you came back, uh, after that. And campUS was just an overnight program for individuals or teams that are deaf and hard of hearing teens.
[00:02:44] to learn about transitions. So.now that you have a lot to share on a professional side too, but before we kind of get into your professional journey, I would love if you would be willing to share a little bit about your parent journey, because I think parents stories are really powerful to share. So would you be willing to back up a little bit and share that.
[00:03:08] Lisa: Sure. Yeah. So of course, it's gonna age me a little bit to talk about the age of my son, but yeah. You know, I have to be honest, it's really fun to be on this side of the, um, parenting journey. Um, my, our son, my husband and I, we have four kids and our son, Anthony, uh, is 21. He's a junior in college. Now I'm studying theology and philosophy at Marian university.
[00:03:36] And, uh, our journey started when he and his twin sister, uh, were born three months premature. So, um, that was, uh, a pretty rough time for our family at the time. Um, we have two other girls, um, and they were foreign to at the time. And, uh, so Anthony and his twin sister, Lanie uh, we're at Riley children's hospital in Indianapolis, um, for three months, um, both really, really sick babies at the time.
[00:04:06] And so, um, they both spent, uh, over a month on, um, a ventilator and, um, uh, but, uh, both really have had. Great outcomes. They had incredible care at Riley. And, uh, so our, our hearing journey began, um, right as we were getting ready to exit the NICU three months later, um, they came to do his newborn hearing screening.
[00:04:34] And ironically, this was in June of 2000 and Indiana had just passed its newborn hearing screening mandate. Um, so wow were we fortunate. Um, so they came in and, and um, you know, we were learning lots about newborn screening back then, so they just kept screening him over and over, um, hoping he would pass and he didn't, um, his sister did, but he didn’t.
[00:04:59] And so, um, we were sent home from the hospital, um, needing to do pediatric audiology follow-up. And so from that point again, remember this was 21 years ago. Um, he came home on oxygen and so they were, um, at the time only doing, um, sedated ABRs and they didn't want to sedate him, uh, until he came off of oxygen.
[00:05:24] And so finally at about 10 months of age, We were able, um, to do his sedated ABR. And from that we learned, um, about his hearing loss. He in the NICU had, um, a couple of pretty big risk factors for hearing loss. He, um, was given ototoxic medications because he was sepsis. Um, and, uh, he also had a toxic bilirubin.
[00:05:52] Uh, and had many, many blood transfusions. And so his final diagnosis after a few different opinions was that he has auditory neuropathy bilaterally. So, um, so yeah, so because of, um, being so premature, he and his twin sister were both receiving early intervention services. We were getting all of them, OT and PT, developmental therapy.
[00:06:19] And then when he got diagnosed. Um, with his hearing loss, we started, um, speech therapy. So, yeah. So, um, from that point on, you know, it was, it was a little rough. We had, um, you know, lots of decisions to make as a family. This was, um, really new to us. We had, um, all of the experience was new. We hadn't really experienced any family members who were dealing with, um, a child born really premature.
[00:06:50] We didn't know anybody, um, who was deaf or hard of hearing. So all of it was a new experience and, um, it was, uh, like I look back now and think, wow, those were some crazy heres. Um, so, uh, so at the time of his diagnosis, um, my older two would have been five and three and then, you know, twin one-year-olds. Um, so it was a really crazy time.
[00:07:19] Carrie: So you said Anthony was officially diagnosed at 10 months of age, and then you were already receiving early intervention. What was your next step after that diagnosis?
[00:07:30] Lisa: Yeah. So originally he was diagnosed with bilateral sensorineural hearing loss. And so he was fitted with hearing aids. And, um, so then we started, um, you know, all kinds of intervention services we were doing, I guess I would call maybe total communication at the time we were doing
[00:07:46] Sign language with him as well as working on, um, some spoken language as well. Um, again, back then, I didn't know what I didn't know. So I didn't know the difference in all the different signing systems or about American sign language, or I didn't know, you know, even about listening and spoken language. Um, and so that all came over time for us.
[00:08:09] Um, we just, you know, started doing, um, whatever we thought might work. And then we really just had to kind of watch him and we had to change courses a couple of times to find what was going to work for him. And then, um, there was just some, some, um, I'm going to talk about like the parent gut feeling, there was just some things in my gut that just kept feeling like it wasn't.
[00:08:31] So we went and got a second opinion about his hearing and that's when we got the diagnosis of auditory neuropathy. Um, so we didn't change much. He, he, um, he's been a hearing aid user even with his auditory neuropathy and he's done really well, um, with hearing aids and, um, but it was just good to know, to kind of understand a little bit more about, you know, the way we would approach, um, some of his interventions
[00:08:58] Carrie: Right. So, and then after just kind of going back to some of your school journey with Anthony. What was that like from a parent perspective of going, did he go to a preschool school or did he start in kindergarten and then kind of maybe just some highlights along the way for you that
[00:09:19] Lisa: way? Yeah. Yeah, sure. So, um, because of, um, all the other.
[00:09:25] complex medical needs. He had early on, um, uh, early intervention was tough for us. And, um, so I, he was still, he, um, made huge gains in, um, his occupational therapy, uh, physical therapy, developmental therapy needs, like at age three, he was aging out of all of those services, but he was significantly still behind in language.
[00:09:52] And so, um, again, I didn't, you know, you don't know what you don't know as parents. And so I just kind of started doing my research at two and a half. The school districts came out and did like that transition meeting with us. And prior to them coming, I'd gone to visit some different preschools. I had gone to, I went to visit our school preschool, our public school preschool.
[00:10:14] I went to, um, visit a couple of private preschool placement. And, um, when the person came into our house to talk to us about transitioning into school, I, she mentioned the public school preschool program. And I said, yeah, I went to visit that. And I said, I'd really like to talk about some of these other private school placements that I went to look at too.
[00:10:35] And, um, she said to me, her exact words were, oh, we hear it. You know, X school corporation, we. Only use our preschool. There's no other options. And so I just knew, again, that mom gut feeling. I knew that probably wasn't right, but I had to go to work and I had to learn everything I needed to learn kind of about special education.
[00:10:58] And you know, what my rights were, um, what our rights were as a family and as parents for Anthony. And so by the time I, I was, I was equipped with some information and resources. By the time we had his first IEP meeting. And so, um, we did ask, we did propose as parents for him, um, to attend a, um, private preschool program, um, through, um, the public school at the, at the expense of the public school.
[00:11:27] And after a very long meeting, um, the team did come to the decision that that would be an appropriate placement for him and that they were willing to give it a try. So, yeah, so he, he attended a, um, a private, deaf and hard of hearing preschool program. He was there, um, for three years, uh, and then his last year there, he did a split placement.
[00:11:52] So to make transition back into our public school better, we did, um, three days a week at the private preschool placement and two days a week at a public, um, preschool, um, gen ed preschool program. And then by the time he was in kindergarten, he was fully mainstreamed
[00:12:09] Carrie: Wow, but that's great during any, and I know it's going to kind of feed into all of your experience of, um, professionally that you have right now, too.
[00:12:19] But I just want to say, since I did have the opportunity to meet Anthony a couple of years back, he's such a sweet, smart, amazing kid. And I didn't, you know, I didn't know him when he was little, but I knew him as he's transitioning in the college and, um, just amazing what he's doing right now. And just to see him now, um, when you kind of tell that story, um, you know, where, where you all started, right.
[00:12:47] Lisa: Yeah. You know, I got to say it takes a village. Um, we had some incredible, um, support along the way. We had, um, really fantastic professionals, um, who supported us, um, you know, provided us with great information and resources. I couldn't have done it. We, my husband and I could not have done this without them and they taught us very early on, um, that Anthony needed to be a strong little advocate for himself.
[00:13:15] So yes, you got to meet the benefits of that great information and resources that people came to us early on, um, to create the young man that Anthony is today.
[00:13:27] Carrie: Yeah. Is there anything reflectively that you would have done differently if you would have maybe known or. had different information or not part of the journey and you just learn along the way and it helps you in one way or not.
[00:13:45] Lisa: Yeah. If it was at all possible, you know, it would have been nice to have like, you know, a way to look into the future. Um, so knowing what I know now, um, I was so stressed and so worried and, you know, um, there were some just nights of no sleep throughout the journey, worrying about getting to where we are getting the best outcomes for him.
[00:14:09] And I look back and I tell families today, Enjoy the journey enjoy every minute of the journey. Um, and then the other thing is, is that, um, we didn't have the opportunity early on to meet diverse, um, deaf and hard of hearing adults. I, and, you know, they, uh, have so much wisdom, um, to share with us as hearing parents.
[00:14:30] And so I would have done that a little bit sooner too. I would have sought that out.
[00:14:36] Carrie: Yeah, that's interesting you say that. Cause my mom probably would have said some of the same things too is, you know, she wished she would have had a crystal ball. She wished she would've had the other parents as well as, you know, deaf adult.
[00:14:52]or hard of hearing adults to see and talk to you. Bye it's. Like you said, all part of the journey and most parents have never had that experience before. So it kind of gets me to more of, um, Involvement with Hands and Voices, which is a parent driven organization that supports families with children who are deaf and hard of hearing without bias around communication modes or methodology.
[00:15:22] Can you share a little bit more about how you got involved and connected with Hands and Voices?
[00:15:30] Lisa: Sure. Yeah. Hands and voices has been such a big part of our family journey. Um, I found hands and voices. I went to a presentation by hands and voices in my home state here in Indiana. Um, when Anthony was about two and a half, about that time, we were going through all that stressful time, transitioning to preschool.
[00:15:50] And I sat at this presentation, listen to the mission and the philosophy. Of the hands and voices organization. And, um, it may sound funny, but right. I sat there and like, it was like this big weight came off my shoulders and I'm like, I found my home. I found my people, um, the philosophy of hands and voices of, um, you know, their motto of what works for the child is what makes the choice right.
[00:16:15] Was exactly what I needed at that moment. Um, you know, this, this world, um, of deaf and hard of hearing can be quite controversial at times. And I was finding myself caught right in the middle of it. And when I listened to this idea that, you know what we, um, let's focus on what we all have in common. And that is this idea of.
[00:16:39] Raising deaf and hard of hearing children to reach their, you know, um, optimal, um, you know, outcomes and, um, and it, and there's multiple ways to get there and what works for one child and one family doesn't necessarily work for another. It was, it was such a refreshing idea. And so, yeah, I've been with hands and voices now.
[00:17:02] 18 years. Uh, so I started as the founding parent of the Indiana chapter. I sat there that day and said, I want this in Indiana. And, uh, so myself and actually a deaf adult, um, who was also a parent of deaf children. Um, started the Indiana chapter. Um, I guess that would have been back in like 2003 or four.
[00:17:27] And, uh, and then I worked for the Indiana or I was a volunteer for the Indiana chapter for many years. And then in 2009, our early intervention, um, system, our early hearing detection and intervention system, EHDI. Uh, wanted to fund a guide by your side program. They wanted to formalize parents, parents support.
[00:17:50] So I had the opportunity to start that program in Indiana. And, um, you know, what a humbling experience, uh, for many years, Carrie, I got to be the first point of contact, um, calling those families right after they had just, um, were, um, given the news that their child was identified as deaf or hard of hearing.
[00:18:12] And so, um, that is what made me, who I am today is, you know, we're talking about my family and Anthony and our story, but really, um, what equipped me to be able to do what I do and support families is listening to all the other family stories. So, yeah, so I did that, um, in Indiana and then I started working for Hands and Voices headquarters, um, in.
[00:18:38] 2012. And so we are 45 chapter strong in the US and Canada. Um, we're an organization for parents. That's led by parents. So all of our chapters are led by parents like me. Um, it was founded for parents and professionals in Colorado, um, about 25 years ago. And then all of a sudden word got out, um, about the mission and the organizational structure, and then other states wanted Hands and Voices.
[00:19:11] So our primary purpose now at Hands and Voices headquarters is to support our chapters in, you know, these 45 chapters who are on the front lines, um, providing support to families and professionals in their states or territories. And, um, you know, we, we say we envision a world where deaf, where children who are deaf or hard of hearing have every opportunity to thrive, achieve their full potential and experience equity and inclusion.
[00:19:38] That's our vision.
[00:19:40] Carrie: I love that vision too. And yeah, to know that you started with just one chapter in Colorado and have grown to 45 chapters in the US and Canada is amazing. And think about all of the support and parents that are able to be reached by having this vision and mission that Hands and Voices. Has for all of you, but kind of going back to your story that you said you started in Indiana as the Guide by your Side, what would you say coordinator or, I mean, is that a good word?
[00:20:20] Okay. So, um, was Guide by your Side and official program at that point in time, or was that something that you helped develop?
[00:20:30] Lisa: Yeah, no, I'm so Guide by your Side was founded actually out of our Wisconsin chapter. I don't know the exact year. Um, but, um, again, by some great professionals there that had this idea that, um, I actually formalizing, um, parent to parent support.
[00:20:49] Of course, that is not saying that informal support of parents just meeting each other is not vitally important, but actually taking this idea and formalizing it where there's a true curriculum and a training and, and, you know, um, evaluation of how the program's working for families so that we can constantly be improving it that idea
[00:21:10] Um, came about out of our Wisconsin chapter years ago, and then just started growing. And I don't know where Indiana was and it was in the early, early group of Guide by your Side programs. But I don't remember exactly where.
[00:21:24] Carrie: Okay. And so what I guess the benefits obviously of implementing this type of the program would be having that curriculum and, um, you know, uh, something that you actually following and training and things like that.
[00:21:39] How many states right now have a
Guide by your Side program? Like an official one through Hands and Voices
[00:21:48] Lisa: Yeah. So we have 25 states that have a funded guide by your side program, where they have, um, organizations or agencies who are funding them in many states guide by your side, um, is a good fit for EDHI program.
[00:22:06] In meeting their family support and engagement, goals and objectives. Um, so many of our programs have, um, are supported and funded through the, through the EHDI system. Um, but there are diverse funding. Um, you know, sometimes it's it's money that they've raised on their own, or we've got a couple of our programs that are funded by their school for the deaf.
[00:22:26] So there's a variety of different, um, organizations who fund. Our Guide by your Side program. I think what makes us unique is, um, several years ago, We were able to be involved at Hands and Voices with a research group out of Canada, from Western university and Dr. Sheila Moodie, and they were developing, um, a conceptual framework of parent to parent support.
[00:22:51] So Hand and Voices was on the, um, original group that was developing this framework. And once the framework got published, our Guide by your Side programs have now, um, infused that into our work. So we use that framework, um, as we're supporting families.
[00:23:11] Carrie: Yeah. That's an incredible framework too, that you guys have with Dr.
[00:23:15] Sheila Moodie. Can you walk through just. About, like if a family would have a guide by your side, um, person, I guess, trained, uh, parents, what does the, what kind of support overall, or kind of from a 360 degree view, does that person provide to the family?
[00:23:37] Lisa: Sure. So, first of all, we're always following the family's lead.
[00:23:41] So, you know, every family, like I, all the families I've connected with there just, hasn't been two that have been identical. So you're really trying to get to know the family first, find out what their immediate needs are, but we're really looking at, you know, different domains. So we're looking at the family wellbeing.
[00:23:58] We're looking at the child wellbeing. We're wanting to make sure that the family has good, accurate information. Um, that they are empowered to make decisions for their child and family. So those are the areas primarily that we're looking at. But again, um, we, uh, we train our parent to parent support providers, um, to make sure that they're really following the families need.
[00:24:24] Um, we always say, you know, you can go in with an agenda, but you will scratch that agenda completely. If the family has something else, that's an immediate need. And I also want to, I'm talking about parent to parent support, but I also want to mention that Guide by your Side has a deaf adult to family support component.
[00:24:41] So we also train deaf and hard of hearing individuals, um, from diverse backgrounds. So making sure that parents can meet, you know, a deaf or hard of hearing adult who functions. Um, and they're in navigates their world using American sign language, a deaf and hard of hearing adult who uses spoken language and, you know, cochlear implants and hearing aids and a hard of hearing deaf and hard of hearing adult.
[00:25:04] Um, so we that are deaf and hard of hearing adult to family support is so that those individuals can share their lived experiences with families as well. So that's an additional component to the parent to parent support.
[00:25:18] Carrie: That's a great component as well. And just like you said, with, you know, going into families every family his journey is a little bit different.
[00:25:26] And so being able to. I have that I guess, shared experience from a deaf and hard of hearing adult. It is important to, because all of the journeys are going to be a little bit different, um, that they bring to the table. What if a state does not have a program? Is there, have you heard of any ways that states have tried to implement or another avenue to implement this kind of parent to parent support?
[00:25:53] Lisa: Sure. So, first of all, I want to say all of our chapters. Um, so, you know, I said we have 45 chapters and we have 25 guide by your side programs. All of our chapters are providing support to families. Um, you know, that's just who we are. Uh, but some of them have been able to receive funding to implement this formalized program.
[00:26:12] Um, I also want to mention that at Hands and Voices we're just one. Organization of many really strong organizations out there. And I don't want to begin to, you know, even mention them all cause I'm going to leave somebody out, but there are also other really fantastic family-based organizations who can provide family to family support as well to families.
[00:26:36] Um, you know, it's not about us making sure it's hands and voices that's providing it. We just want to make sure every family is getting access to. And, and Carrie when I talk about access, one of the, um, biggest challenges that we face is that some states have identified that family to family support is, um, part of their systems of care for family.
[00:26:59] So they ensure that every family gets referred to family, to family support families. Families don't have to go find it then. If you remember, you know, just 20 minutes ago when we were talking about my family journey and I didn't know what, I didn't know, families have so much going on that to, to assume that they are going to be able to go out and seek family to family support, um, is, is, um, it's just, it just doesn't happen.
[00:27:27] And so when a state system recognizes that this should be a part of the systems of care that every family should equitably get offered the opportunity to enroll in a family to family support program. That's where we see again, equitable support when it's not set up that way. I believe the families who need us the most are who don't find us, um, because.
[00:27:54] You know, there's no system that sets sets set up that they get an automatic referral.
[00:28:00] Carrie: Yeah, that makes sense. And I believe the Joint Committee on Infant Hearing their position statement, 100% support this family to the family support. And you have, you know, American academy of pediatrics and audiology and speech pathology and parents, and lots of organizations.
[00:28:19] Who've recognized the importance of this family to family connection.
[00:28:23] Lisa: Yeah. You know, that's been my experience certainly as a parent, myself, is there are just some, um, fantastic, um, professionals and leaders out there in the field who really see the value of family to family support. Just like I say, you know, I, I'm a hearing parent, I, I don't have the lived experience of a deaf or hard of hearing adult or I'm, I'm not a speech language pathologist, or I'm not a teacher of the deaf.
[00:28:49] Um, it really takes us all. Um, and so, you know, for those fantastic professionals out there, being able to ensure that families are also getting access to other families for information, um, it's really important. And yeah, the joint commission on infant hearing certainly supports our work.
[00:29:08] Carrie: So moving a little bit.
[00:29:09] I wanted to talk about a couple of other programs that Hands and Voices has. And you talked about empowering pay rights earlier. And so handsome voices has a program called Astra. Could you share a little bit more about Astra and how that really helps with advocacy and empowerment?
[00:29:29] Lisa: Yeah. So Astra stands for advocacy support and training.
[00:29:34] Um, and this program was established, um, after Guide by your Side. And it, um, it really just took all the educational advocacy work that Hands and Voices had been doing and packaged it into a training curriculum. What happens is many parents like myself, um, find themselves having to quickly learn about special education or what we'll call part B services.
[00:30:02] So transitioning from early intervention into special education and you know, many parnets. Again, like me would say, we, I just started learning about early intervention. Now I've got to learn about, you know, part B or special education. So that's what Astra is intended to do is train parents and equip them with the information that they need so that they can best advocate for their children.
[00:30:28] Carrie: It the training. Typical, I guess, um, training, is that done? Like what does it look like? Is it like a one day thing? Is that a couple of days? Thing?
[00:30:40] Lisa: Yeah. So, um, if you, if you go onto our website under Hands and Voices.org, we have a whole Astra section. Tons of resources there. Um, the training is actually done through our chapters.
[00:30:52] So the chapters, because they're, you know, they're our frontlines, they're our local people. So the chapters can conduct the training, um, and their state or province or territory. Um, and so we've trained now in 25 states, um, in the United States. Astra and we call it basic training. But, um, I don't know that there's anything real basic about it.
[00:31:16] Um, it's like drinking from a fire hose. I'll be, I'll be honest. It's an eight hour training. Um, and then, um, our chapters can also apply to have what we call an Astra program. And when they become an Astra program, they train individuals, um, to then be Astra advocates on behalf of families. And that's a whole second day of training, kind of the finesse of advocating on behalf of a family or not on behalf.
[00:31:45] Let me change. Let me say, alongside a family, our, um, our goal is not to do it for the family. It's for us to be models for the family to teach them so that they can then do it themselves for their child. And ultimately our goal is, is that then they'll model for their child, so the child can advocate for themselves.
[00:32:07] So that's yeah. So that's what Astra is all about. Um, and like I said, we've been, we've been to 25 states so far. Um, and we have lots of professionals that join us at our training too. And, um, seem to also really enjoy it.
[00:32:21] Carrie: Yeah, that was my next question. Is it targeted to other people besides, you know, families that you've fed a lot of professionals and debt going?
[00:32:30] Lisa: Yeah, it's really good. You know, um, I always try to, as, um, I always tell our chapters, we want to make sure we have lots of families there, but it's nice to have a mix of parents and professionals because just by the comments and the questions that are asked, they learn from one another so much. So it's, it's always good.
[00:32:47] Um, to have a mix of parents and professionals together during the training
[00:32:52] Carrie: And is this training targeted to a certain like parent child age range? Or is it from birth to graduation?
[00:33:03] Lisa: Yeah, it's really it's birth to yeah exiting school, you know, the, the. Um, you know, my son, my son's a junior in college and that, and although I'm really over the peak of the journey, um, you know, the journey continues.
[00:33:19] And so there's so many transitions from early intervention to preschool from preschool to kindergarten. And then middle school, you know, when they all of a sudden start changing and having lots of different teachers, and then that transition age, when we're really looking at post-secondary education or transitioning into the workforce there's, um, needs of students then.
[00:33:43] So really Astra covers that whole age.
[00:33:47] Carrie: Yeah, there's always something new. I think as a parent, you probably feel that every like stage of transition, it brings about those emotions again, then how you deal with it might be a little bit different but the challenges change along the way, and to be able to have other families and professionals to ask, um, would be important too.
[00:34:08] Lisa: Yeah. And you know, again, we talked about the uniqueness of each child and what's also awesome about Astra is that we serve families no matter what the communication or language is of the child, whether they're attending their home school or whether they're attending a state-based, um, deaf school or they're attending a private
[00:34:28] You know, listening and spoken language school, we are trained and equipped to support families, um, to whatever that educational need is of that student. And we know that again, um, that is unique based on each child and family.
[00:34:42] Carrie: Right. Yeah. Thank you for sharing about that as well. And I know I, I attended one as a professional in Ohio.
[00:34:49] It was a while ago, but I, I did get a really nice book that had a lot of information in it. And then I know you can go to the website and find additional support and information there too. It was a great trainingt for that day, and like you said, it was like drinking out of a fire hose because there was so much great information that was coming out of that whole information packed day.
[00:35:12] before I wanted to ask you about one other program that I know you are the director of, and that is the FL3 center. So how did this program or center come about? And can you share a little bit more about that?
[00:35:30] Lisa: Sure. Yeah. You know, we just had to join the professional world of acronyms when it comes to deaf and hard of hearing.
[00:35:36] So FL3 stands for the family leadership in language and learning center. And this was first established in 2017 by the health resources and services administration at the maternal child health bureau and its purpose is to provide technical assistance and support to national state and territory, EHDI systems of care.
[00:36:03] In order that family engagement, leadership and family support is provided to newborns and young children. So, you know, again, you talked about joint commission on infant hearing, being, you know, very supportive around family support, um, HRSA or the health resources and services. Administration also has a strong belief in the value of family engagement, leadership and family support within the EHDI system.
[00:36:29] So Hands and Voices was fortunate enough to be the first recipient of the federal funding. And then we were awarded the second round of a cooperative agreement in April of 2020. So we're working through our second round of. And the center allows Hands and Voices. Um, the opportunity to support all family based organizations, not just our chapters, um, and parent leaders in the 59 states and territories.
[00:36:57] So that's exciting. We're meeting, you know, lots of, um, other people out there who are doing this work of providing family leadership and engagement in the EHDI system. So we really appreciate our work that we do with all the EHDI system stakeholders. And we're committed to ensuring that families receive the best possible resources that they can so that their children can achieve success.
[00:37:24] Carrie: That sounds like a huge opportunity. Can you just share a little bit more of how, um, your center is able, uh, how they are supporting the different states? I mean, is it one person from each state kind of is connected to you? Or, or how does that work.
[00:37:44] Lisa: Yeah. So we, um, we really look to each one of the EHDI programs and the 59 states and territories to identify who the family based organizations are in their state that they're working with.
[00:37:56] Although, you know, all of our resources are available to any family based organization in every state. Um, and we really look at kind of targeting like technical assistance and training to family based organizations. We look at communication dissemination, like kind of being a, um, a national communication and dissemination around family engagement, leadership and family support.
[00:38:21] Um, we look at national partnerships through the family-based organizations need to partner with, um, you know, all the different professional organizations. So national partnerships are really important to us as well. Um, so we kinda, we look in all those different areas and, you know, it was a great starting place, um, with Hands and Voices, because we do have chapters in, you know, 45 different, um, states and territories.
[00:38:46] So that was a great starting point.
[00:38:49] Carrie: Wow. And so now that had just started in 2017, I'm sure that you and knowing you have a big vision for where it can go. This center can continue to grow and go.
[00:39:00] Lisa: Yeah, it's been really fantastic. Um, you know, working with, again, uh, the leaders of the EHDI programs in each state and territory, it's, it's wonderful to see the passion and the professionals who are leading those programs to ensure that newborn screening is happening.
[00:39:15] That diagnosis is happening on time that we're hitting those one, three, six timelines. Um, it, and so, you know, we're just here to, um, support them in any way that we can, because we all have the shared vision of just ensuring that all kids, um, you know, achieve their optimal success success.
[00:39:35] Carrie: Wow. Well, thank you for sharing about those programs, I guess, um, as we start to wrap up here with this podcast, So do you want to just kind of give a quick synopsis of, I know there's so much information on your website as well, but just kind of maybe some of the highlights of professionals or parents or people are listening today, if they would go onto your website, what, what would they see?
[00:40:04] Sure.
[00:40:05] Lisa: Oh gosh. Okay. So I'm going to start with our most recently released resources. So, um, we, in the first round of the FL3 center, we, um, partnered with a wonderful group of, um, professional experts in language and literacy. So researchers, speech, language pathologists, um, who came in, um, volunteered their time to work with us.
[00:40:29] And over the course of three years, developed some language and literacy tip sheets for families. And so we have those up on our website now, um, we have now added a family activity guide to each one of these, um, language and literacy tip sheets. And now we are working and interviewing each one of our language and literacy expert.
[00:40:54] To come and talk about those, the tip sheets that they were involved in creating and how families can best use them. So, yeah, like right now, up on our website, we have Christi Itano, who's up there, you know, with, you know, uh, a couple of great, um, videos I think about, uh, phonology and semantics Um, and, uh, so we're constantly adding new videos as we go.
[00:41:21] That same group also helped us, right. Um, um, developmental milestones resource. So it's, um, you know, there's lots of different developmental milestone checklists out there. This is more about explaining the importance of developmental milestones for families and how parents can, um, learn more about what to expect their child to be doing at different ages and stages.
[00:41:45] And then, um, finally this past year, you know, through living through COVID in the past couple of years, we created what's called the virtual waiting room. It's on our homepage of our website right now. And it's a really fun, interactive, um, resource that has information about tele-health parent to parent support.
[00:42:05] There's a really good, um, guide for families to audiology. And then like if you click on the little coffeemaker, it's a self care station that really talks about the importance of parents and, you know, making sure while they're doing all this hard work for their child, that they're taking care of themselves.
[00:42:22] So. That's just a few of our recently released, um, resources, but I really encourage you to, you know, explore our whole website and we are getting ready really soon to unveil a new homepage. So, um, that will be coming
[00:42:39] Carrie: Oh well, that is exciting to look forward to you too. And I will in the show notes, definitely link the Hands and Voices website.
[00:42:48] So people can go directly there and explore all of these new resources as well as the resources that you already have up there. As we wrap up. Is there anything Lisa that I didn't ask you, that you were hoping that you'd like to share?
[00:43:05] Lisa: Well, I was just thinking about like my advice to parents. Um, you know, when I look back on my journey, it, it's amazing to know that the difference, um, a family can make in a child's, um, language learning outcomes.
[00:43:22] Um, Being able to, there's so much to learn about how to provide a language rich environment for our kids. And that's where it all starts. Um, there's a lot of pressure about making different decisions for our kids, whether it's, you know, the language or communication modes or methods we're gonna use or what school we might, um, be exploring.
[00:43:45] And what I'd like to say to families is, um, you've got to start somewhere. And I think less emphasis should be made on the decision that's being made and more emphasis on that once you make the decision having, um, professionals around you who can help you, um, progress monitor to make sure that the direction you're going is working for your child and it's okay to change courses.
[00:44:11] It's, it's just fine. Um, and, uh, to trust your gut, I mentioned my parent gut a couple of times. And knowing that, you know, your child best and last, um, have fun. It can be a lot of work. Um, but there's so much joy. We sometimes have to just slow down enough to find the joy and enjoy it. The years fly by fast.
[00:44:38] Uh, so soak in this time with your children, because you just don't get the.
[00:44:44] Carrie: That is wonderful parent advice, but, um, for out families as well as any parent along the parenting journey. Cause it does go so fast and sometimes we get caught up in that moment and. Of stress and making decisions. And I like what you said too about, you know, taking time for yourself to doing that whole journey and being able to reflect on everything right.
[00:45:08] . I want to thank you, Lisa, for being a part of the empowEAR audiology podcast and sharing just your parent journey, as well as giving our listeners an overview of Hands and Voices and some of the programs that are offered there. And, um, I'm going to provide some of those links in the show notes about the wealth of information that you provided as well today.
[00:45:32] Lisa: Thanks, Carrie. It is such a pleasure to work with professionals like you and, you know, your unique experience of being deaf or hard of hearing your self bring so much value to us as parents. So I really appreciate you inviting me today. And I'd like to invite all the listeners to come, um, you know, follow us on our social media, too at Hands and Voices.
[00:45:52] Our Facebook page has over 13,000 followers right now. Um, but we have plenty of room for more. So we would, um, love. Everyone to join us on Facebook.
[00:46:04] Carrie: All right. Thank you, Lisa. And I want to say thank you to all of our listeners. I want us, um, for spending time with us today. If you've enjoyed this podcast, please share it with others and take the time to give a positive review and until next time.
[00:46:18] I hope you stay empowEARed on your journey.
[00:46:21] This has been a production of the 3C Digital Media Network.