Episode 31 Show notes

Usher’s Syndrome, a Family Perspective with Robin Lockwood

On episode 31 of All Ears at Child’s Voice: A Hearing Loss Podcast, Haley and Elise speak with Robin Lockwood. Robin is a parent of a child, Allison, with Usher’s Syndrome. She has also just received her masters of science at Washington University in Deaf Education. Robin speaks about how she coped with Allison’s diagnosis of Usher’s Syndrome, a progressive hearing and vision loss disability. She talks about her journey from an attorney to a teacher, how being a parent and educator has helped with her ability to advocate for Allison, and her family’s resilience through it all.

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Special thanks to John McCortney & Michael McCortney for their work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.

 

Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.

Paige:

Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. I’m Paige and I’m an audiologist at Child’s Voice. My favorite thing about Child’s Voice  is hearing the kids talking and laughing throughout the hallways each day, and watching them grow throughout their time at Child’s Voice. And now, to start the show.

Elise:

I’m Elise Sundberg and I’m a teacher at child’s voice working with the school age children. And now I’m one of the podcasts co-hosts, I’ve been helping out behind the scenes for a while now, but this is my first time recording with a guest. I’m so excited for today’s conversation.

Haley:

And I’m Haley Gubbins. Today on the show we talked to Robin Lockwood. Robin is currently a teacher of the deaf at Weingarten Children’s Center, an Option school located in Redwood city, California. Robin became interested in deaf education after her daughter was born with profound hearing loss in 2013. She left her career as an attorney to pursue a master’s of science in Deaf Education from Washington University in St. Louis graduating in 2020. I actually had the pleasure of teaching her daughter for a short amount of time and I got to know Robin during those few months, Robin is a dedicated mother who advocates for her daughter so well as they navigate Usher’s syndrome. Robin, we are so happy to have you on the show.

Robin:

Thanks Haley and Elise. I’m so happy to be here and thank you for that very kind introduction. It’s really nice to see you again, Haley and talk to you.

Haley:

Yeah. So I’m glad that you’re here and I’m really excited to learn more about Usher’s syndrome. So I’m very excited to talk about today’s topic.

Elise:

Before we jump into the main discussion we like asking each of our guests to share a little story from the past week. It could be anything to help the listeners learn a little something about you. Does anything cute, funny or heartwarming come to mind?

Robin:

Well I mostly was at work this past week with my students at school, which usually has lots of heartwarming stories, but I think what I will share is just getting last week to go with my family, to the beach at half moon bay and we watched the sunset into the Pacific ocean. Um, that’s the first time we’ve done that since we moved back to California last summer. Um, and that’s just always is such a, um, awesome experience. So, and just seeing the sunset into the Pacific ocean is amazing. So, um, yeah, that was an awesome part of my last week.

Haley:

That sounds really nice to be by the ocean because being an Illinois, we don’t have the option. We go to lake Michigan, but that’s not quite the same as the ocean. So that’s a wonderful little story.

Elise:

It sounds so beautiful! I mean that story, but along with where your school is located in the Redwoods.

Robin:

Oh yeah. It’s, it’s pretty awesome location. We’re close to wine country, close to lake Tahoe, close to, It’s close to everything and we’re 30 minutes from the city. I love it.

Elise:

I’m so jealous.

Haley:

I’m Definitely jealous. So enjoy that beach for the both of us since we’re here. So to start with today’s discussion, I mentioned that I had the pleasure of teaching Allison when she was three years old and now she’s a big eight year old and I just can’t believe it. So when did you find out about Alison’s hearing loss and then her vision loss? Because when I was teaching her, she had glasses, but she was not diagnosed with Usher’s syndrome. And if you’re unfamiliar with what usher syndrome is, it’s hearing and vision loss, and it’s a progressive loss as the child grows older. So when did you find out about Allison’s hearing loss and then when did you find out about her vision loss?

Robin:

She was diagnosed with hearing loss via the newborn hearing screening at the hospital. She did not pass the hearing screening, and then through a series of re-screenings and whatnot, she was finally diagnosed with, uh, profound bilateral loss, at six months old through a sedated ABR test. So, we’ve known about her hearing loss. I mean, essentially since she was born in the hospital. And when we went through the process for CI evaluation, you meet with a genetic counselor and we chose not to do the genetic tests testing at that time. We would have had to pay for out of pocket. And I think we were just kind of overwhelmed generally and just chose not to do genetic testing. So we did not find out about the Usher’s syndrome until she was almost five. She was diagnosed with usher syndrome.

Haley:

What made you look further into her vision loss? Were there changes that you noticed, with maybe how she was reacting or maybe she was talking about how she couldn’t see certain things? What made you look into that?

Robin:

So she, like you said, she had glasses when she was in your class. She had glasses since she was two for astigmatism. And we did notice that she had a harder time seeing things at night, compared to my son, she would get very disoriented in the dark. There’s also for some types of usher syndrome, a component related to balance, and she’d always had issues with balance. She didn’t walk until she was after older than 18 months old, which can be assigned for Usher’s. So I was not really ready to go there. So we were actually just at an annual optometrist appointment and the doctor looking at her retina said, “I’m seeing some things that are concerning” and I knew right away. So she referred us then to an ophthalmologist who works with inherited retinal diseases and that doctor confirmed the diagnosis of Usher. And that was shortly before she turned five.

Haley:

That has to be so hard.

Robin:

Even though it had been in the back of my mind for some time because of the, the balance issues she had had and noticing issues with night vision, even having that in my mind didn’t prepare me.

Elise:

For Those listening and might not know, I know there are three types of usher syndrome type one type two and type three. What type does Allison have?

Robin:

She has type one. So there are the three main types. And then I think they’ve identified at least 10 subtypes within those. So she has type one B and type one, it’s generally going to be profound hearing loss, congenitally from birth, and then the progressive vision loss that starts in type one generally, before 10 years old. And you start to see signs when they’re fairly young.

Haley:

Oh, wow. I didn’t realize There were even three types. And then the subtypes in between. That’s amazing that they could at least the different markers for each evaluation and where the child’s at.

Yeah, and they’re still discovering new subtypes so it’s changing all the time.

Haley:

Well, isn’t everything in deaf education or  with children, with hearing loss? Everything is always changing.

Elise:

So can you speak more about your initial reaction and even your family’s initial reaction to finding out about her Usher’s?

Robin:

Sure. There was nothing that was going to prepare us for that. And there’s no sugarcoating, it was devastating. I think there’s was never going to be a good time for it, but the timing was also very challenging. I was just accepted into graduate school. We were starting to plan to move across the country, to Missouri where we had never even been before, leaving our friends, we weren’t going to know anybody. Allison was just getting ready to graduate from Desert Voices and mainstream into kindergarten. So I think, you know, we thought at that point that her biggest challenges were behind her. She had come so far in terms of her speech and language she was doing amazing. And then it just felt like starting all over again, just being thrown back into that grief. And in terms of our family, for my husband and I, it took us a long time to actually tell our extended family about the diagnosis. I think it was so challenging for us to deal with our own grief of the idea of like placing that grief also on our parents and trying to manage their reactions to it. It was just, it was too much. I don’t know if that’s like the best or healthiest reaction, but it was all that we could manage at that time. I couldn’t share it with my parents. It took me awhile to be able to take that step because it was just so overwhelming.

Elise:

Yeah. Sounds like you’ve got to take it one step at a time. And you shared when you were ready.

Haley:

Well, and I think you bring up an interesting point, the grief process. I think some families or people listening who don’t necessarily have a child with a disability, that grief process is so real. And there are times where it’s cyclical, where you just come to a point where you’re like, “yep, we’re good”. And then you mentioned, she’s going to mainstream, which is hard anyway, to start over for a child. Right. And then you get this second diagnosis and it’s kind of going through that process again, of coming to terms with this could be a setback. I think Allison is thriving just based on what I see, but it’s just one of those things where it’s, it’s gotta be so hard where you’ve already been through this once and you think that she’s ready, she’s successful and then you have to start it over. So I think that’s really important that you bring that up because that’s a topic that people don’t really like to talk about, but it’s a very real part of, you know, hearing loss or disabilities in general. So,  I can’t imagine what you’ve been through, but when you were talking about your initial grief process, you mentioned how you’ve gotten accepted into the Washington University program, to become a teacher of the deaf. And I think that’s so amazing because when I met you, you were an attorney still. So you started out as an attorney, but that changed once Allison was born, but was that a hard decision for you to make, to go from being an attorney to a teacher?

Robin:

When my son was born, I left  my job as an attorney to stay home with him and then kind of went back part-time on a contract basis. He and Alison are only 16 months apart. They’re very close in age so, that process of leaving my career as an attorney had kind of already started. and it was not necessarily related to Allison’s hearing loss. I kind of had already decided to step away. Obviously my choice of my next career was  inspired by my experience with, with Allison. Was it a hard choice? I think I knew I was making the right choice. The hardest part for me was just being concerned about other people’s expectations about it or judgment about it. I think  when you’re an attorney, you put so much time and money into developing that career. And just so much of your self-concept and self-worth are tied up into your career. And so making that choice to go into deaf education, I was more concerned, I think about how other people would react. And I think once I was able to get past that and get past worrying about other people’s judgments or feelings and focus on what, knowing what was best for me, it was easy. It was never that hard of a choice for me. I knew it was the right thing for me, and I’ve never once regretted it. I’ve never once missed being an attorney. And now being in deaf education, it just feels like being at home. It’s definitely the right fit for me.

Haley:

And I think it’s really cool that you have a unique perspective to be a parent with a child, with a hearing loss. And then also a teacher. Elise and I, we don’t have any kids of our own, we’re just teachers of the deaf, but you have this dual perspective where you can see it from both sides. And I think that that’s just an amazing quality to have, and I think it does solidify your choice to be a deaf education. So I’m very glad you’re in the field.

Elise:

Yeah. And going back to the grief process, is something so real that all parents have to go through in their own, their own timing. And I think sometimes as educators or professionals, we sometimes forget that about families and parents and, we’re trying to reach these academic goals. And then it’s, we’re, we’re thinking about “why isn’t this, the focus on parents’ minds”, but sometimes that grief process is more prevalent.

Robin:

No, that’s right. And that’s exactly right, Elise. And I think as professionals, we do need to keep that in mind. We’re so immersed in the field and we’ve worked with so many different kids and for the parents, this is it, this is their one kid. This is their one child with hearing loss. And, there are so many different issues as a parent in the grief process. So, what they might be experiencing in that school, at school that day, it might not be what’s on that parent’s mind. And I think you need to always remember that and meet parents where they are at, in their process. It is an important part. If you don’t have parents, parents are not working for their grief. They’re not going to be able to then move on to doing what they need to do for their children in terms of their education. So they have to work together with those two things. I think.

Elise:

So thinking about how your transition from being an attorney to becoming a teacher of the deaf, how has that changed the way you advocate for Allison and her needs?

Robin:

I think being both an educator and a parent just gives me a lot of perspective on both sides. I think as a parent, so many parents are scared of the IEP process. There’s a lot of anxiety about it and it’s viewed as being very contentious as a parent. And I think coming to it now as an educator, I know that teachers do not like IEP meetings any more than parents do.

Haley:

I agree with that, we don’t love them.

Robin:

And, just understanding that, you know, everybody at that IEP table has the best interest of that child in mind, and it’s not really an “us versus them” situation. Nobody goes into special education unless they want to help families and help students. So really everybody’s on the same side. And so I think it’s helped me to recognize that, you’re not the best advocate if you go in there fighting and you’re trying to win, it’s not a win, lose situation. We’re all on the same side. And so I think  recognizing that  we do all have the same goals in mind, but we’re coming at it from different perspectives or maybe different angles, but need to start from a place of just building connections and trust. And I think that starts with building connections and empathy and finding that initial common ground, if we’re all there to help that student. So being an educator and a parent and having been on both sides has just helped me to build that perspective.

Haley:

Well, how has it changed how you advocate for Allison now that she also has vision loss. How did it change once you’ve got that diagnosis of Usher Syndrome or has it changed?

Robin:

It’s changed a lot because Usher is such a rare disease. Many people who’ve never worked with a child with Usher, or even if you’ve worked with one child with Usher, you’ve worked with one child with Usher’s. It’s so variable. So, I think it’s your role as an advocate as a parent, when you have a child that has a rare disease is even more heightened because you’re the person at the table who knows the most about it. And so even though if you have professionals- a teacher of the deaf, who’s worked with children with hearing loss or a teacher of the visually impaired. they may not have worked with a child with Usher, you’re in a position as a parent of having to educate the other team members about Usher and how Usher is presenting in your child.

Haley:

That’s a really good point to bring up is that even when it comes to kids with hearing loss, but especially kids with hearing loss and maybe additional needs, you’ve only ever worked with that one. So you might know about hearing loss, but it’s going to differ based on when that child was diagnosed, are they wearing their implants or their hearing aids at home, then you throw something like a vision loss on top of it. And I have not personally worked with the child with Usher;s but, Elise, I know you have before. It’s just different case by case. And so I think that’s really important that you bring that up just because you know, it with one kid doesn’t mean you’re going to know all the answers with any kid with Usher’s or another disability.

Elise:

Right. And from my experience, knowing that you initially just learned that the child has Usher’s Syndrome you don’t always know exactly what type and even the 10 different subtypes, I didn’t know that either. So you can learn that from a parent that has gone deeper to the genetic testing and you’re in the field so you know a little bit more about that etiology, but some parents that don’t know much about hearing loss, they’re still learning that part of this community. And then Usher’s Syndrome on top of that, they might not know all of the little nuances to advocate for their child. Is there any advice that you might give parents who know their child has a hearing loss might be suspecting, there’s something else like vision loss or anything else?

Robin:

I think for a parent who is suspecting a vision loss, or if they’ve just had a child diagnosed, I think advice would be to take it one day at a time and one piece at a time don’t overwhelm yourself. There’s so much information and it’s overwhelming. You’re already kind of drowning because you’re worried about this diagnosis. So don’t take on more than you have to take it one day at a time to get one piece at a time, make the one phone call that you can that day, you know? And I think the most important thing is to connect with other parents who’ve been there. Even if you don’t say anything, even if that parent doesn’t say anything, just having that connection to a parent who’s been there and understands the grief without having to say any words. It’s just, it’s so powerful and so important. And that’s ultimately what helped me work through my grief. And now I’ve been able to help other families with it. And I just think that community is what’s going to be the most helpful.

Haley:

I think that’s so important to find that community. And I know that you came from an option school with Allison where you had that available to you but then once you go to a new school or once there’s another diagnosis, it’s kind of like you have to find your group again. And so I think that’s so, so important. And I’m really glad you brought that up because I, I think sometimes parents feel they’re alone in some of it, and, especially in that grief process. So finding a community could definitely help you through that and know what the next steps are. And yeah that’s wonderful. I’m so glad you found that. I was in a district where I was the only deaf ed teacher and I was like, “I can’t do this alone”, but I cant imagine as a parent with a child with disabilities, you have to find your, your family,  your group. So  to kind of bring it back to Alison, Can you tell me the different professionals and support staff on Allison’s educational team and touch on how Allison’s doing?

Robin:

Sure. So yeah if you have, you know, the dual diagnosis like this your team can be quite large and it’s varied a little bit over the years. Currently, she has a teacher of the deaf and an educational audiologists through the school district also. And the audiologist has been super helpful. I think going back and forth from distance learning, to being in person, there are some different challenges. So she has been amazing. And her teacher of the deaf, she doesn’t currently have a speech language pathologist. She graduated out of speech last school year. She’s above and beyond where she needs to be with speech and language. But she has obviously had that in her team in the past. She has a TVI, which is a teacher of the visually impaired, who she works with on braille skills. So reading and writing braille and also works with goals related to connecting with the blind community and other people who have vision loss. It’s part of her IEP goals. I think just having a self-concept related around vision loss, because she grew up with so many kids with hearing loss, but had never interacted with others who have visual impairment. So that’s part of her IEP as well. And she has an O and M specialist, which is orientation and mobility. So, she works on using a cane, which she does use it at night. She has night blindness. So her vision at night is very, very poor. So she works on using a cane, and also mapping skills. So just knowing where you are in your environment, Cardinal directions, what’s north and south, sort of like mapping your home. So getting around our house, even if it’s very dark, she can do, because she has a mental map of where everything is in our house. And so that’s something she works on with her O and M instructor at school. In the past, she’s also had a physical therapist and occupational therapist related to her balance issues. Some types of Usher also have the vestibular dysfunction. And so she’s worked with those professionals on balance, building her core and, body awareness. And she’s also previously had a social worker, on her team. Because I think with that progressive, loss like this there’s can be so many social, emotional, things related to it. So for Usher’s Syndrome, it’s often considered best practice to have, a social worker or a counselor on the team as well, just to help, the student deal with all those changes. So I think, I think that’s it. I think that’s where all the members of our team.

Haley:

You know, there’s just a laundry list of people you’ve had on the team, but it seems like you’ve covered all your bases, so that’s, that’s good. That’s what’s best. So what are the qualities that you appreciate the most in the professionals that work with Alison and your family? I think you mentioned, you know, O and M and the teacher for the visually impaired, how has that given you like a new perspective or have you appreciated what they’ve done? Or something, because this is all new. Can you talk a little bit about that?

Robin:

I think for any of the professionals across the board, just communication and, building trust. I think if you have a good relationship with the professionals, it is so helpful. It opens up communication. So I think starting off with a new family, just building on that trust by listening and, not coming in, trying to tell the parent everything, but just listening to what they have to say first and showing your own vulnerability as a professional. So her very first ever TVI,  teacher of the visually impaired in Phoenix when she was first diagnosed, she called me and was telling me about kind of her experiences, because she had a child who was blind. And I think her sharing that story and kind of opening up with her own vulnerability helped to build the trust. And I felt like I was able to kind of go with her with all of my concerns. So I just think initial relationship building is so important with professionals.

Haley:

It really is. And I think that at the core of being a teacher, it really is being able to build that rapport and have those relationships because goals will be easier to reach because you’re all on the same page. And I know, Elise, that’s a big part of your foundation as well as building that rapport.

Elise:

Right. And even thinking about when I first started college, in my teacher training, the first step was building rapport with the student you’re working with. And I don’t know if we always talk about building the rapport with the parents and especially with the younger children, that is, that’s probably the biggest thing you can do. And I was thinking when you were talking about Allison’s support, can you talk a little bit more about what her current vision is like now?

Robin:

It is so variable across different types of Usher, and it can vary even within one type that can be a lot of variability. So for her she has a night blindness. So if it’s low light, she has a very hard time seeing, and it takes her a lot of time to adjust to changes in light. So if she’s outside and comes inside. It takes a long time for her eyes to adjust. And being in bright light is challenging too so she wears sunglasses outside. Right now her peripheral vision is still pretty good. That’s going to start to decrease. So that’s the progressive part of it, um, is that her peripheral vision will begin to decrease. So we haven’t seen a lot of that yet. She’s eight but throughout adolescents that will start to progress. We’ll start to see more of that. So right now it’s mainly the night vision that’s challenging for her.

Elise:

So at school functionally, can she see what she’s reading and she’s working on the braille to help support that later when she does lose her vision?

Robin:

So she was dual literacy from kindergarten. So she started with braille and kindergarten as she was also learning to read print at the same time, which was awesome for her. Cause I think she had this one-on-one braille instruction in addition to the reading instruction she was getting in class. And I just think it helped her print reading as well to have this dual track with braille and print. She’s doing really well with both of those things and yeah, it’s to start it now so that when she does need it, she has that skill already because braille is very challenging thing to learn and it can take a very long time. Just starting that now and also exposes her to using braille. I didn’t want to wait to introduce a cane or a Brailler until she was older and might be more resistant to it as an adolescent, I wanted to start it younger. So she was used to it and more confident in it.

Haley:

Yeah. I think that, again, you bring up a really great point of starting young because I work with three to five, you, Elise, you work with a little bit older and Robin, you also correct me if I’m wrong, you work with the preschool level?

Robin:

Right. I have pre-K, they’re four to five.

Haley:

Well, I think sometimes parents think, okay, well they’re three years old and they’re going to learn all this really quickly and we’re getting them in early enough, but as an educator or professional, we understand that the earlier you start using those devices, the earlier you start learning that Braille, the outcomes are going to be so much better and it’s going to be an easier transition and we’re going to see more progress. So I think that’s amazing that she was learning two ways to read the, the braille and print. And I think like you were saying, it’s just going to be better for her. Maybe she doesn’t need it now, but that doesn’t mean she won’t need it later.

Elise:

Right. And it’s all about the support. Sometimes, we know of students that use sign language as a support where they can still use their spoken language and use their voice. But the sign language can help either understanding concepts or expressing concepts. So it’s the same with braille supporting her reading. I know that I’ve heard of some toys that have braille or like Legos or blocks that have that. Have you experienced any of that?

Robin:

TVI actually just gave us the Lego’s that have braille on them and they’re Lego brand Legos. They can fit with all your other Legos, but there have braille letters on them and you can build words. So she’s been playing with that.

Haley:

That’s a really fun toy! I didn’t know that existed. How amazing, that’d be so fun.

Robin:

Yeah. it’s pretty new!

Haley:

There are words on the Legos or is it like the color words?

Robin:

They’re letters. So each Lego then has a different letter, so you can use it to build words.

Haley:

Wow. That is so cool!

Elise:

What do you want parents or professionals to know about hearing loss? And then also, what do you want parents or professionals to know about usher syndrome?

Robin):

Yeah, and it is so hard for me now to like piece apart the hearing loss from her Usher’s Syndrome because they are so connected. And I think that’s part of what my advice would be is that it’s not vision loss plus hearing loss. Like you can’t think about those things separately. When you have a kid who has any kind of deaf blindness it’s, it’s not additive. You don’t, you know, you can’t okay. We have a teacher of the deaf who’s working on this and we have a TVI who’s working on this. It has to be collaborative. So I think that would be the best advice is that how you’re working with this child, you need to have all the team members communicating with each other because it’s not separate. Someone with vision loss, they’re typically relying on their hearing. And if you have someone with hearing loss, there are a lot of visual clues that help that person. And so, a person who has dual sensory loss, you have to consider it altogether. So I think just collaboration among the team members is the best advice and listening to the parents, giving the parents a chance to tell their own story of where they’re at. Um, because they are going to be the experts when it comes to their child.

Elise:

That’s such a great answer. It’s the whole child, it’s not just this part and this part. You know, you do your work, SLP can do their work. It’s the team is working together collaborating, and it’s the whole child to focus on

Haley:

It’s what makes Allison Allison, right? It’s what makes that kid, that kid, it’s all of them. We have to look at the whole child and not just the pieces.

Elise:

Are there any parent resources that you can recommend for parents that are learning more about Usher’s Syndrome or where to find support?

Robin:

Yeah, there are some really good ones. Some that are started by parents of kids with Usher. There’s an organization called Lane of inquiry that was started by a mom who has two sons with Usher’s Syndrome and she provides parents support. She’s also a special education researcher. That’s a good place to start. And then there’s an organization that’s called Ava’s Voice. That was also started by a parent and they provide a lot of support, not just for parents of kids with Usher’s syndrome, but also for, children and adolescents with Usher’s syndrome to connect with other kids, which is something I will definitely do for Allison as she gets a little bit older. And there’s a summer camp for kids that have Usher. That’s another good resource. And then just the Usher’s Syndrome coalition is a good place to go, just to learn more about usher, the different types and to stay up to date with different research and things that are happening. That’s a good place to go.

Haley:

Those are awesome. Yeah, we’ll take those links and we can post on our Instagram and share it. You talked about having that community and having these places for people to already reference is just going to get the word out there more and have more of that support. So we’ll definitely include those in our show notes and in our Instagram.

Elise:

That is great. Thank you. So Robin, we’ve been talking a lot about how you’ve worked through this and gotten to support Alison, and how is Allison coping with all of these changes?

Robin:

Great question. And it’s interesting because she’s the one who is experiencing this. She has vision loss and hearing loss and out of all of us in my family and extended family, she probably has the best attitude about it. Honestly, she is. Um, as I’m sure Haley, remembers she’s the same super happy, optimistic kid. And if anybody is prepared for these kinds of challenges, it’s Alison, because she does have this really, sunny disposition and outlook. She does get anxious, so she has anxiety about different things. And then as she gets older, I do want to get a counselor on her team again, just to make sure that she has that support as she deals with the progression of her vision loss.  She has a great outlook. She never, ever complains about having to work hard. I mean, all of her services right now because we’re kind of in this hybrid mode right now with school, she has her vision services after school. So she has a full school day, just like the other kids in her class. Then she stays a half an hour later every day to see, her TVI to work on braille or to work on her cane skills. But she never complains about it. She has great relationships with her providers and just a really positive attitude about it.

Haley:

That’s amazing. One thing I keep saying is that, especially this year, I feel like we didn’t give kids enough credit and kids are so much more resilient than we think. So, although this is hard as a parent or, extended family, like you were saying, Allison’s just resilient and this is what it is. And it sounds like she’s just taking the bull by its horn. And she’s like, “all right, this is what I’m going to do.” So I’m so glad to hear that she’s, she’s been able to still be Alison, you know, I remember as a little three-year-old, but I’m glad to hear that she’s still as sunny and happy as she once was. So to go off of that and to kind of wrap it up, what are your hopes for Allison as she grows up looking back, like, do you have any favorite age or a favorite age or a milestone, and then you can see this becoming a hopes and dreams for Alison as she gets older.

Robin:

I think the hopes are Alison it’s the same as it is for both my kids, right. I just want her to be happy and to be independent, looking into the future, there’s a lot of research that’s happening right now related to inherited retinal diseases. And I do, I follow it closely. There’s a lot of awesome things happening. They’ve some success with gene therapies for other retinal diseases. So, you know, I’m hopeful maybe that she won’t have to, live with progressive vision loss. Maybe this will help her, but I don’t hang my hopes on that. And when I look at my hopes for her future, I know that she can be successful and fulfilled regardless of what happens. And regardless of if there is ever a cure for this. And so I guess my hope for her is that she has such a strong self-concept and self-confidence that she knows that she is capable of doing whatever she wants regardless of what she is able to see or hear.

Haley:

That’s awesome. I’m so happy to hear that. I like that you brought up that your dreams for her are the same as your son. Why you would have any other expectation because she’ll put her mind to it. And then what are you most proud of for Allison through this process and, and her growing up and knowing that this is going to be progressive? What have you been most proud of during everything?

Robin:

I think I’m just most proud of Alison maintaining just her optimism and how hard she works and just for our, our family just staying our family, like it’s shaped who our family is, but it doesn’t define our family. And we are still, the family that Aaron and I bring are the values that we bring to our family. And, I think just how close we’ve remained as a family and how optimistic she is and how that kind of leads, the optimism, our family towards this disease for Allison.

Haley:

I love that you said it shapes your family and it doesn’t define you. I think that that’s, that’s a great way to put it. It might’ve changed some things, but that doesn’t define who you are as a family, and you’ve only come out of it stronger.

Elise:

Thank you for joining us for another episode of all ears of child’s voice, be sure to join us for our next episode. We release episodes once monthly.

Haley:

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Elise:

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Haley:

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Elise:

Thanks for listening, Bye!

 

Paige:

Thanks for listening. Be sure to subscribe to the show wherever you listen so you don’t miss any episodes. As always we appreciate your feedback so please send us an email or voice memo at podcast@childsvoice.org If you are interested in supporting Child’s Voice and programs like this one, please visit us at childsvoice.org and click on the Donate Now button.

 

Children:

Bye! Thanks for listening!

 

Resources

Braille Legos- https://www.legobraillebricks.com/

Lane of Inquiry- https://www.laneofinquiry.org/

Ava’s Voice- https://avasvoice.org/discush/

Usher’s Syndrome Coalition- https://www.usher-syndrome.org/