00:00:02.000 - 00:00:52.500

This is Carol Johnson, interviewing Michelle [Allen}, on Friday, November 5th at approximately 5:00 o'clock p.m. So, before we start, do I have your permission to record this interview? Yes. Okay, great. So, I just kind of want to start off with getting some general information about you. So if you could tell us kind of where you're from, and just a little bit about your life and then also about your child. Okay. I'm uh, I'm from Maryland. I live in Glen Burnie now, born and raised. My daughter is nine. She was born, severe profound deaf, hearing loss and we didn't find out at the newborn screening we found out when she was about eight months old.

00:00:54.300 - 00:01:30.750

Okay, and do you know what caused her hearing loss or do we have any idea about that? We don't. I didn't get any genetic testing done. But I have hearing loss in my family. My grandfather, when he was, I think eight started going deaf in one ear and then progressively in the other one. And then my dad also a little bit, but no deaf members that we know of. Okay. Yeah, and then sorry, did you say your daughter has hearing loss in one or both ears? Both.

00:01:32.800 - 00:03:55.800

Both ears? And so when kind of what was the process for you? Once you found out, she had the hearing loss and how did you decide to ultimately approach it? So I guess the process was just whatever is next. I went to the Google machine and Googled everything. I Googled hearing loss and first and looked at resources in the area that could help her. And the first thing I came across was. Well, the first thing we did was go to the audiologist. We found out by going to the audiologist and she had to have an ABR to get tested to see if she was profound And, then, once we did get the diagnosis, it was just looking for resources. I think Maryland School for the Deaf popped up and early intervention popped up. So I just I just what was next like, okay, I went that and that and that and that. We tried initially, we tried at the hearing and speech agency. We tried hearing aids in those didn't offer any help. She had a little residual, hearing in one of her ears. I don't remember. I think it was the left one and those, but those didn't help at all. So then we started the process of getting her Cochlear implants. Okay, great. When you first found out about her hearing loss, kind of what were your first thoughts or reactions? Where you overwhelmed at all? I wasn't when I first found out. I know her dad was, but I wasn't. I just did like I said, I was so focused on what's next. I think, my pivotal point was when I think I assume that the hearing aids were going to fix it. Like, she was gonna be able to hear and they didn't. I did feel like a sense of loss. I guess grief would be the closest. Because I just thought that was going to fix it. I didn't know anything about like, oh sorry, Mom [interruption in interview]

00:04:01.800 - 00:07:50.800

[Interruption in interview] [Interview resumes] The last part I remember I don't know if you heard this when she got her hearing aids, that's what I felt, and they didn't work. I felt a sense of grief and just an unknown just unknown of what's going to happen. Yeah, so that's obviously really hard and stressful. What did you kind of do to try to reassure yourself that it was going to work I just really did what was next to do. I felt she was going to be fine. I felt that like just deep down, even though I didn't know what to do next, I still felt like she's fine. She's gonna be fine. This is not a new thing. And, not just she's going to be fine because I'm going to fix it. I just think she'll be fine. So, I would just tell myself that. And, then, I started connecting with people. When I went to Maryland School for the Deaf, they had a parent group. And I just was reading a lot and then talking to the parent group and learning ASL and focusing on that and communicating with her with sign. And I was getting interaction and I was communicating. So I think I just kind of focused on that. It really when she was a baby. It wasn't or even younger, there was just so much to do next to get her not just with cochlear is but like, with education and learning sign language and there was so much to focus on. I didn't think I really noticed much of a, I didn't feel overwhelmed. I felt overwhelmed by the amount of appointments, but not by the actual reality. I think, the reality didn't, or how it's different, didn't, come until much later.

00:07:52.900 - 00:11:02.000

Yeah, and then sorry. What age was it that she got the Cochlear implants? She was 18 months when she got one and then she was two and a half when she got the second one. Okay. Could you describe that process a little bit more with how many surgeries it was? How the healing process was and how that kind of worked? Sure. So that process was one of the first things they said to us when the hearing aids didn't work. They said to me that they do have Cochlear implants and I had already been involved with the deaf community, so there was a little schism. I was trying to understand about doing Cochlear implants and not and I was really just trying to find the science behind it. So, that was kind of overwhelming a little bit there. Trying to now engage with a culture I knew nothing about. And then, trying to do what was right for her and then not experiencing it. It was a lot of mental circles. So I just did a lot of reading. And then when I decided to do, you know what made me decide to do, the cochlear was meeting a speech therapist that worked at [Johns] Hopkins. And we were talking and she signed. And she had dealt with a lot of kids that did have cochlears and did sign language, so talking to her and understanding the two worlds. I finally decide to do that. So I researched, you know, where's the best place to get them done? And it's fortunate we're so close to Hopkins. There was a doctor there that's been doing it for 20 plus years. And so I started researching him. I met him and then it just kind of she got ready for surgery the night before and it was nerve wracking. And sitting in the waiting room was nerve-racking. But I knew it was going to be okay. I just had this sense of this is going to be ok and it was. I'd say preparing for the second one was more nerve-racking because maintaining that sense that it's going to be okay is great. And it's a good story. I can tell myself. But then the second time if felt like I was chancing it. Like, well, it was okay this time and the second time you're messing with the odds or something like that. I don't know. But that mentality was in my head. And, Hopkins was great. They had speech therapy. It wasn't just about getting the cochlear. They explained that well ahead. This isn't a fix. I mean it is but it's not, as far as her hearing. But it's something that you have to work on. She has to work and then I started learning how developing language, worked auditorily. And, so I was prepared for that afterwards and I'm glad I prepared myself and they did too.

00:11:04.500 - 00:13:11.300

So, then, once you've got the implants and you started doing the therapy, what did you do with her on an everyday basis? And how was the hospital, and the doctors involved with that therapy? The doctors were great. The doctors, there were surgeons, and then there were the speech therapist. I guess they're doctors. I don't know, but they were great. This wasn't new for them. This was a large center that had a lot of history. We did speech therapy there once a week. We had mapping once a week just to adjust it initially. Learning about all the equipment was a little overwhelming, I'm very ADHD and sloppy. So, I had to start really paying attention to each intricate part and having an organizational system, which I sort of did. I just had a box which was pretty big for me and I had a box of stuff. It was just a lot of new learning and Hopkins was really good. I forgot the other part of the question. Oh, and they told me to just talk, everything, say, to parents of children without hard of hearing, or deaf, that just talk everything you're doing, which I was already kind of doing when I was signing anyway. So, I just kind of bridged it from that talking, which I would sign and talk at the same time. So, when you communicate with her is a primarily through signing or talking or do you continue to do both now? So, now it's shifted. I would say it's been waves in. This was on me. Right now, it's primarily talking. Her talking to me. I would say it's like 50/50 with me communicating with her sign and talking. But, she doesn't sign with me because I'm so much slower then her now.

00:13:14.800 - 00:18:47.150

And how do you talk about her hearing loss with her? And how do you kind of advocate for her? Have her advocate for herself in terms of school or social life? So, school, I have not had a lot of issues with her IEP, her individual education plan. She, since I had made the decision that she's going to go to the deaf school, I haven't, I've heard stories, I haven't had to because they've been very supportive and I've filled in the gaps where I think speech needs to be a focus. So, we go to outside speech or we do it at home. So, for school there hasn't been. But, then camps, there's been as far as advocating for a sign language interpreter or accessibility. That's now what I'm starting to notice I think the difference of having a child that doesn't have heaing loss or doesn't need the extra accessibility right now. Well, not now because it's covid. But, when I would go to yo her her camps and when I was signing up for camps, I just had have to start weeks ahead of time to get an interpreter to make sure they understood how she hears and that it's not like our hearing. Now, that was like that when she was like, 6 to 8, and she was learning how, you know, to say, can you repeat that? Can you say Again, and she was also having a lot of like in social situations. She had her CI's on and kids would stare, and she doesn't like people staring, And, now she's kind of moved through it to. Well, she went through a thing. She would explain it right when she met people and say this is what this is. I can't hear you well. Until like last year before it was she wanted to hide the CI's or me to not sign. But she was her choice. But now it's been a little different where she just kind of moves through it. So, social situations. As far as like if we would get together with friends, because a lot of, well all my friends, have hearing children, that don't have, you know, CI's or hearing aids. So, that was when she was younger. It was not. I noticed a big difference once they get to the age, she got to the age where she wanted to have like social groups because in groups it's harder for her. So, I would find myself interpreting for a lot. And asking her did you hear that? Did you hear what he said? And that was that. And then, I noticed that she usually takes control of the situation or whatever, the playgroup is, she'll take control. So, she understands what's happening. It seems like this is what's happening. She'll understand, so, she can control the environment and make sure she's getting all the information. So, as far as advocating for her in camps requiring or trying to get a interpreter has been an issue. You know, there's certain small camps I really want her to go to, but the information would be lost if she didn't have an interpreter, or if it was one on one, I guess it would be different, but. So, advocating for that, and then trying to pay for the difference, and what's not covered. Yeah, that's great. Have you noticed during this time? Any significant setbacks or issues? You've had while trying to get this language acquisition? Not really. I mean, I think that if, let me think about it for one second. The only thing is for me as my availability, as far as signing and being a single mother. It was a lot of, I mean it's a lot of work for not single mothers, but to have to learn another language or do the extra reading. But for her, I really think since the initial part did made sure that she has had that early intervention and got as much resources as I can and the School for the Deaf was super helpful too. I think with her that just that was helpful. I didn't notice any delays with her acquiring language. She was pretty well ahead on most of the developments. Now, after COVID, I've noticed some regression with English, like learning, as far as certain structure. I don't know specifically, but I could notice that her language is a little behind like behind hot behind. Well, yeah, behind now. So, I've noticed that.

00:18:48.700 - 00:21:25.200

Yeah, what parts about COVID do you think kind of have caused that? So definitely, I would say right now the not getting her to write as much, since she's not at school. She, last year, we just, she didn't she didn't write. She eeads a lot. She reads all the time, and I think the main things, since we're not sitting down and doing a lot of writing, or I'm not correcting, her a lot on how things are pronounced, since she read so much, she understands the words. It's just when she says them, she says them like she hasn't heard them before. Like it's a new new word. And now, so it was sign language. The grammatical structure is different and we did a lot of signing this year. And still, she'll say, but with sign language, you say the word, the action or the noun first and then you fill in the rest, kind of like Spanish. And sometimes, she'll speak and sign like she'll speak the grammatical text of sign, not text, context. But COVID, specifically, she didn't have access to both worlds. Then in school, they kind of teacher the differences between the languages and I'm just, I just know it as a second language a little so I don't really go into all that. So, how, besides the support group with other parents, how have you kind of taught yourself sign language in a way that can kind of keep up with her? So, I did the community college. I did up to ASL 3. Then, one semester. I did Gallaudet for an accelerated program. So, that was one way. And then, I did a couple meet up, deaf meetups, or ASL, meet ups where it's usually students trying to learn, people are trying to become an interpreter. Books online. I guess mostly, it was with the college classes, because that was the best resource is having or meetups where you have to practice.

00:21:27.500 - 00:22:43.920

Okay, and then so kind of shifting a little bit. How have you talked to her about her hearing loss? Does she understand that she doesn't hear the same way as other people? And how do you inform her of what's happening with her body? She definitely understands that she doesn't hear the same way as other people. Do you mean it for more like how the CI's are in her? What do you mean? Yeah, so to what degree does she understand that she has Cochlear implants and this is why she has them what they do for her to. How much can she know, and then explain that to other people? Oh, she's, I don't know, is there a 10 out of 10? She's pretty well aware of what they are, how they work. She's aware of the fact that she can't hear without them. That one sounds different than two. She's pretty aware. She's knows how they work and everything.

00:22:46.900 - 00:24:52.400

How much do you communicate with her about, like how you said you had some setbacks with COVID, how much do you and her communicate about issues that happen and how to move forward with them? We're pretty good about that. Issues pertaining to her hearing loss or just in general? Mostly pertaining to her hearing loss, but just anything in general about your communication. If she has questions, she'll ask, she'll explain, I can't say specifically, but she'll talk about how hard it is in situations with groups. And she'll just talk about it. And I can't, I don't usually say well it'll get better this or that. I said that really sucks and how can I help? And she'll just talk about it. She'll say this is, why I do this because I asked you, I don't remember specifically, but I remember saying, is this why you did this? She had moved or something, so she could hear someone better, and she had pulled somebody aside to hear them better. And she said, yes, and she's pretty good about it. And I do notice that she'll share a little less when she went to camp. The Interpreter was not stellar, but she navigated it. She said that she could figure out how to navigate it and sometimes she'll be like, oh, no, it's fine. Because she'll know that I'm saying well, let's make this better. Let's go in there and fix it. And she's like, no, I'll figure it out. So, she tells me and then she tells me to a point where she just wants to do it herself.

00:24:55.100 - 00:28:56.400

Okay. Yeah, that's great. So I know that it right now you said that she's in a school for the deaf. Do you plan to ever put her in just a regular public school? Or do you want to keep her in a school for the deaf? I don't know if they go up high school. Yeah, it goes to high school. I don't know. This is a something I have oscilated about numerous times. I've reached out to our local school. We're supposed to actually have a tour within the next couple weeks. I said, if you're interested in going to a hearing school, let me know. We'd have to commit. I would want you to commit for a year, if you do it. And, she said she has, and then she changes her mind sometimes. I don't know. I still just, don't know. Because she connects so well with her deaf peers at school and has so much in common and it's stuff I can't teach. I can't teach Deaf culture to her. I can't teach and there's just so much Social Capital she could build within the community, that I wouldn't be able to give her. Although, there is academics, and I don't know if I just don't understand how things, I think she's very smart. So, I know that the local public school could probably offer a little more because there are behavioral problems in her school with kids which are directly related to parents not being able to communicate with their children. So, that presents itself as behavioral issues with the children, for no fault of their own. And so, there are setbacks with going there. But, I don't know. There's just so much you can learn there that I couldn't teach her. So, I would like her to look at the mainstream school so she has a basis to see what it is. But, there's just so many factors. Is there another kid there that has a Cochlear? Is there someone she can relate to there. What's her emotional stability? Which I far as emotionally, I think she's pretty, she has some strong emotional stability. So I don't know. I don't know. That's a big, I don't know. Yeah, that's totally understandable. Is there one specific factor? What's the most important factor in determining if you're going to put her into a public school, rather than keeping her in the School of the Deaf? How her emotional stability is in middle school. Middle school is such, I am preparing, that I just think it's a time when kids get lost because well A, our prefrontal cortex is growing, and we just want to fit in. So, it's like a grow or go kind of time. So, I think I would be basing it on that. How? I mean, that's the main decision. Now, academic, she's home., I homeschool like one day a week. I let her stay home and we just do a lot of science experiments and kind of just have fun. I need to do more writing. I can fill in the gaps with academics. She's very smart. So, I'm not concerned so much with that, and she will get heard, like she'll make her voice, she'll make her point across. But, I do want her to, I guess I would just have to see what, there's too many factors, how her social emotional strength is, what the public school has to offer that the deaf school doesn't have, and if there's anyone that she can connect with at the public school.

00:28:58.900 - 00:30:54.400

Yeah, that definitely makes sense for sure. So, when she has the cochlear implant in is she fully capable of hearing to a somewhat normal degree, or does she still have some hearing loss? She's considered hard of hearing, even with both of her cochlears. She can hear, in group situations, it's difficult. One-on-one is optimal optimal. Lip-reading, she fills in the gaps with lip reading. So it would be considered hard of hearing with their CI. She won't hear perfectly. It's a little electronic. It's only way she knows how to hear. But I would say, I think they said, I can't say 50% of well, then it's layered so, now. It's very different. I don't know how, she's really good one-on-one, and she fills in gaps with lip reading. So, I would say she's considered hard of hearing. So, with the lip reading, once COVID happened in people started, wearing masks, did you notice that affected her hearing significantly when she was trying to comprehend people? Absolutely. That's was the biggest, and that is probably now that you're saying that, that's probably one of the things where her acquisition of the proper context for English started to slip, because lip-reading was now out of the question and not only that the maks muffled sound, so there was no hearing. It's already muffled in a way, if there's no mask, but when there was a mask, it was muffled exponentially. That's why we did a lot of sign. I mean, we were home for a lot of it, but we did a lot of sign at that time.

00:30:56.300 - 00:33:11.940

Yeah, that totally makes sense. Was there any instances where, not just in COVID, but particularly during COVID, where you maybe would avoid doing certain things you would normally do because her hearing loss would just make it so much harder and you couldn't get accommodations like an interpreter? Absolutely. I can't specifically think of it, but I know that I've had that thought. I mean there's definitely been camps from, like I can't fight for an interpreter on this one. And, certain family gatherings I tend to shy away, and then try to just set up something smaller. Those kind of things. Yeah, does she get overwhelmed in big groups because of just all the noises that are around her and does that kind of affect her in terms of emotional stability? I think she has, and I can't take any credit for this because she's just kind of cool, but she has now channeled that into, like before I said, she would kind of take control of the situation and, you know, kind of be leader, be, people say bossy, but she would be just take control of the situation. And now it's more I've noticed her being silly and goofing around being like a, jokester and trying to make jokes and get everyone's attention to make a joke. And so she channels it. I know she channels that more with large groups. She doesn't go shy away, but she puts kind of a show on in another way. So it, I don't think it's, it's got to be exhausting. She is very extroverted, so that's helpful for me. I'm so introverted that I probably would not have gone that way, but I know that it's different. It's not the same experience. So, she has a smaller group of people and it's not where she has to put a show on for the whole thing. She enjoys the attention, but she would rather interact with people than be the entertainment.

00:33:14.200 - 00:34:27.600

Are there any extracurriculars are activities she's involved in that involve groups of any size regularly? So that's a big, I have not got her involved in sports. I was planning on doing it, and then COVID happened in general. I kind of wish I had because we could have navigated the, I don't know how to not mean I do, I've had people tell me. But that's one been one of the things is trying to figure out accommodations with a certain sports, because her school doesn't have sports in it. [Audio interruption] Sorry, I have escape artist for a dog. I forgot the question. We were talking about if there was any extracurricular, she was involved in youw were talking about sports.

00:34:28.100 - 00:36:39.950

All right, so the only extra curriculars, well not lately because of COVID, she would have after school events at her deaf school where they would just do games and like kickball things. But other than play dates, we don't have any, and camps. She did carry a lot of camps. I would do a lot of camps in the summer. But other than that, we haven't done any extracurricular and trying to figure out accommodations and all of that is a big one, and being a single mom, and having to do all, not just with regards to her accommodations, but getting there also. Yeah, for sure. What kind of camps have you done in the past, or what her favorite camps that you do? So, my kind of general rule of thumb was try to do four camps in the summer, two hearing and two deaf, or at least one deaf camp. So, there was that camp, and it does hearing children also, but it's a Camp invention, it's a science camp and that was at the school in Frederick. So, we just go and stay in Frederick every year for that. She hasn't any sports camps. A lot of science camps. She did a Roblox Camp, which is a game, huge game. Then that was hearing and that was in Annapolis. She went to Gallaudet. There was a camp in Gallaudet that three years in a row, I think it was, and the Gallaudet campus called the Visual Learning, VLR, great program, and they do both English and sign, obviously the main focus is sign language, but a lot of visual learning, and things like that. So, a lot of science camps. What kind of sports, if any, have you considered getting her into or that she's shown interested in?

00:36:41.500 - 00:37:57.100

Soccer, swimming, basketball. My dad teaches her gold, my dad's a golf instructor. So he does teacher golf when he's in town. But it's just one-on-one. Has there been a discussion about, if she does start a sport, how that would affect her having a Cochlear implants? Would she wear the Cochlear implants while she plays? She would, kind of, we would probably navigate that as a happens. I was thinking probably not, because they fall off so easily, but I know that I'm part of a group on Facebook and they have lots of ways that you can, like headbands, but she would probably be more comfortable not having them on when she played and just rely on like cues. With the implants, in terms of maintenance and care, how do you go about that or how active do you have to be with maintaining them and keeping them working well?

00:38:04.200 - 00:39:42.690

Advanced Bionics is the one that she went through, and they are very good with the warranty, but they are. The care is not that bad. There's a dryer. You put in the dryer, make sure. But it's the losing them, the age that she was implanted up until now, they're so active and she's school part of the day on the bus. So, we've lost two of them. We've had to file insurance claims, so that there's that. It's usually the losing them. That is the main thing, the maintenance of them is not bad. With the insurance, have you experienced any issues getting them or having a procedures done with your insurance? No, there's been, when we lost one, I had to call and kind of fight a little bit for it. But she's on state insurance, and that is very good with, as regards to being covered by speech therapy and all of that. I can't imagine, one of her friends had to, it was a mess. It was very expensive. And so no, she's on state and that hasn't been an issue. But if it was on private, I can imagine being it would be more troublesome or difficult. Yeah, I've heard insurance with Cochlear implants is not fun sometimes. Do you think she has more hearing friends or his non-hearing friends? And do you think she interacts differently with her hearing or non-hearing friends?

00:39:45.300 - 00:42:18.420

I do. She's really about 50/50. She has her hearing friends, I mean non-hearing friends at school, which we have a couple play dates outside of school. And then she has some kids in the neighborhood that she hangs out with. And I don't, I'm trying to think, I think it's harder as far as taking control of the situation. I see that more with hearing peers, than her deaf peers. And sometimes I think that's what the contention is, when she's in a group of deaf peers is that her, I mean, she's still very outgoing and wants to be in control, but she's still, she's not challenged is the word. The dynamics are different as far as her with their hearing peers because she'll take control of the situation. It seems to be easier for do that in that situation as opposed to in with her deaf peers. Do you have any idea why that is? I haven't, the only thing I can think, is that I don't know. The only thing I can think of is with her deaf peers, I mean this is completely, that the same they could have developed the same coping mechanisms being in a you know, primarily hearing world that then now trying to fight with a dynamic of being in both worlds and figuring out their social dynamic like that. So only with like the same experience is, I think that that's why there's the back and forth a little bit. As far as being in a hearing peers and them allowing her to take control, I don't know. It may be because, hearing culture is a little different than her deaf culture, as far as being quiet, when someone else talks. There's a lot, for lack of better word, there's a lot of interrupting with Deaf culture. There's interacting back and forth in this, and that. With hearing, it seems to be like, turn taking, and she'll just keep taking her turn, and if that makes sense. Do you know why there's interupting and deaf culture more than hearing culture?

00:42:19.500 - 00:45:27.780

It's just how interacting, the only thing I picked up on is it would be like, let me try to get this out, right. Asking questions and getting to the exact description of what the story is, is the primary goal; finding out and understanding exactly what this person is saying is the primary Dynamic within deaf, from a hearing person's perspective, in deaf communication. You want to find exactly what they're saying and you want to understand it and you want to know what's happening. With hearing, I think more of it since we just blah blah blah talk all the time there's just so much fluff and it's not you don't want to understand what someone saying, but that there's just a that's not the primary goal. You hear what they say and then you move on. But, within deaf cultures, I want to understand exactly what you're saying. Like that's the only thing I'm my guess is. Yeah, no definitely makes sense. So kind of just moving on to some more broad questions in general throughout this whole a process, what do you think has been the most helpful thing that you or someone else has done in helping you figure out everything? Even if there's a couple things Most helpful... All right, let me look in my brain real quick. I really would say I guess the parent groups. The accessibility to be enabled, like the deaf school as far as, in all of that, going through that process and being able to communicate her with her, learning sign language, and being able to communicate very early on. So the classes, I don't know. They're all just little pieces. I mean, that was primarily, being able to communicate with her was primary. And whoever helped me communicate with her better and faster was the best thing. Like the speech therapy was very helpful, and the sign language classes, and the parents sharing resources. That initially started a really good foundation. So, I would say the initial foundation building that was very helpful. So, the deaf school, the hospital, the speech therapy from the clinic, all of that. Yeah, that's great. I think it community is really nice. What's been the hardest, or one of the hardest parts, of this experience?

00:45:30.200 - 00:48:19.500

Not being able to say that's gonna be okay. I mean, it is eventually, something's going to be okay, but not when she shares oh, it's really hard when I do this. I can't, I have no experience to pull out from. So, I'm sorry, that sucks, I wish I could help you navigate that better. You know, that I think is the hardest. Because as a parent, I want to obviously fix things, but just sitting back and having to watch her navigate in a social situation and missing out, like missing things and or just navigate this situation that may be harder but not being able to offer any experience like, "oh well, that sucks for you, I guess you got to figure it out." I mean, I can be empathetic but I think that is the hardest and trying to anticipate, like I said middle school and the social the drive and need to fit in and how that might be harder for her in middle school when that comes. So that that's probably the hardest. Yeah, that is hard. So, is there anything up to this point you wish you would have done differently or anything that moving forward you plan to start doing differently? I would like to, the past few years, I would like to better my sign language. My sign language. I would wish I would have stuck with that with school steadily. I did want to be an interpreter at some point, but my brain doesn't work like that. But, if I could just be on par and and I think that, continue my sign language and connect her with communities across, not just at school, like deaf community, because we're in such a big deaf area and I'm such an introvert, but I should have just like, dove in. I wish I would have dove in a little more to the deaf community and got her involved, not just with school. So, I think I would have done that a little differently, and the sports. I would have started sports earlier to navigate that easier. Do you have any, since COVID has kind of placed a lot of things on pause, what's the first thing that once things kind of start getting back to more normal, I guess, what's the first thing you want to start working on? Is it sports? Or is it something else?

00:48:20.300 - 00:48:56.800

It's both sports and the deaf community. Both of those. To someone in your support group who's newer, what is the best advice you can give to somebody who is just entering into this kind of new reality/community? So much advice You can give as much advice as you would like

00:48:56.800 - 00:51:41.000

So much or nothing at all. I think I would just say, just set a good foundation, a really good foundation. As early as you can is what served me. I think the best is being completely booked solid. The first few years when language is so important and just kind of prepare for that, that it's going to be, it's going to feel like you're constantly moving and not stopping but it will pay off. And give yourself breaks. Honestly, that's the big one and self care, you know, self-care, you know, that old cliche "can't take care of other people unless you take care of yourself." So yeah, take care of yourself and just set a good foundation. I think that's a really great point. How do you kind of take the time to make sure that you are in the right mindset to care for your daughter and help her the best that you can? I mean, whatever, for me, personally, I found working out was helpful. Just being in the soil, like planting. Finding little hobbies that you don't forget, about my hobbies and sometimes I didn't get to it. And I killed lots of plants, but that I just kept trying, and then now I've cultivated it, a little more so it's a legit hobby. But, have things, I was learning things. Even at that point in my life was a little tumultuous. I was still learning what I liked. So just trying things that might make me happy and to get, because I was constantly out of my comfort zone the whole time, because I was learning a new sign, learning new language in the unknown of if I'm going to get a Cochlear not, the different culture. There was all this new uncharted newness. I was uncomfortable all the time. So I needed to take moments where, and for me, it's either reading, or just like where I just sink into something. I can get in a good flow with and relax and allowing myself, and scheduling that, I mean that too, like, this is important. I have to do this. It's important to me. Even if it's just like, you know what, I want to see the new Netflix thing and I'm going to schedule like three hours where I'm just going to do it and that's okay. That's okay. I think it's so great that you kind of managed to carve out that time for yourself. Was there anything you kind of had to put on hold or stop that you used to do beforehand?

00:51:43.700 - 00:54:40.000

Not before. I mean, like I said, I was still learning really how to be an adult for myself. So, I didn't know, I was going to school the whole time. I would take him just a class a semester and I couldn't really dive, and I don't think it's just with how busy I was. I think just have a kid in general, I couldn't dive into school like I wanted to. But not really, I'd say now is more likely because I'm so hyper focused on I want her emotional, it's been a tumultuous couple of years with COVID and everything that I've been focused on, trying to develop, social emotional stability, and all of that that I've decided to not go to school for a while and just kind of focus on that for the next couple years. So, I guess now that, but that seems important. Like I think I got that from COVID that this is like a really, not that it wasn't important before, but this is this is going to be a hard time, like this time this age bracket and I might be pulling from my own experience, but. I was going to, I wanted to go to Hopkins do all this stuff with Neuroscience. But I mean that I like what I'm doing with her now. Yeah, do you think having your daughter and going through this with her, if you do choose to go back to school, do you think you would want to pursue a career in a similar field now? No, I think the only thing that really, put, that was towards that as being an interpreter, but I do think that I've been particularly interested in Neuroscience because of, I think the language, learning about, you know, acquiring language was very interesting as far as the different parts of the brain and that got me set in the motion of being interested in that as, far as the brain. But I'm more interested in group aspects. So maybe, because I like studying group behavior, so maybe introvert, extrovert. I don't know if specifically like audiologist or speech therapist or anything. I don't know. I don't I haven't had a lot of interest in that. But yeah, maybe like language development and I don't know. I've no idea. I like studying people. I want to be research that clinical researcher. So whatever behavior they're doing in groups, I like to study. Maybe it would be something as far as hearing and not hearing. Yeah, I know. She's only nine, but has she kind of expressed the desire to go into a field related to hearing loss at all, or is she aware that could be an option for her?

00:54:40.600 - 00:56:42.200

Mo, as much as I push for science, she wants to be a YouTuber. So I don't know. I don't know. No, she hasn't expressed any interest in that. It's mostly animals and YouTube or create games. She said something about creating video games. Okay. Yeah, that's super interesting and I can definitely tell your answers are based off of your desire to study people in the way that you kind of interpret everything. So as we're cutting close to the end of our time, I don't want to have to keep you for too long. Is there anything that I might have missed that you think is important to talk about or just anything you're particularly passionate about that you would like to share. I don't think so. I mean, the only thing like when you asked as far as what was most important, I would say definitely the sense of community. And that has, I feel passionate that if I didn't have that, I didn't have these other people that were going through the same experience or you know, all the varied experience that I really would have had no basis, because I could have read everything but you know, there's something about talking to somebody. I mean, there's not something it's physiologically and talking to somebody that you can hear their experience and understand it on an empathetic level. So, I do feel passionate about this sense of community. Is so important, and I can tell that's what, when you asked, what's one of the first things? It's developing that sense of community. Again, I would like to do since COVID's passed, its kind of flaked away. Did you experience any issues joining the community? Or were you just kind of in it as much as you wanted to be in a thing with let you in it?

00:56:43.400 - 00:57:38.300

I didn't experience any issues. If I did, they were, I'm guessing they were self created in my head when I was back and forth about her having a Cochlear or not, but it was all very welcoming. You know, there's there's Facebook groups that, they have back and forth about the the contention, which is not as big now with getting a CI and not getting one, but that's Facebook, As far as in person no, everyone was very welcoming and empathetic and, really supporting her, they were them. She was the main. I was just a parent. I mean, not just a parent in a way, but supporting her was a number one priority. Okay, that's great. Thank you so much for sharing all of this with me. I think it's been super interesting for me. And I'm sure anyone who listens will agree.