Absolutely, absolutely. Thank you so much. OK, so, basically, what this project is, is the way that Rutgers does their doctorate of social work program. And instead of doing a dissertation, I am putting together a multimedia project, which is essentially a website. And my website is geared towards hearing parents who have deaf or hard-of-hearing children and are making linguistic choices for their child.
So I was wondering if you wouldn't mind-- I'm going to cut my camera off while you answer, so, that way, you're onscreen and not me. So could you tell me a little bit about your process, like how did you find out that your daughter was deaf? What were the doctors like? Could you just provide me with some of that information?
OK, do you want the quick version or the longer version? Give me whatever you think will be backed.
OK, all right, so Tinsley, whenever I had had her, which she-- I was full term, no complications, nothing like that-- she failed her hearing screening in the hospital when I delivered. And, actually, the way I found out initially, it was literally 3 o'clock in the morning. Everybody was asleep.
And it was a girl that worked in the nursery. I think it was just a nurse. She came in, and I had been scared because I looked over and Tinsley was gone, and I didn't even know they took her. But, anyway, she just literally said, oh, yeah, by the way, she failed her hearing screening.
And I was like, what? Because I have no hearing loss. My husband doesn't have hearing loss. Actually, Tinsley's the first deaf person I ever met in my entire life. So I was totally-- I mean, 3 o'clock in the morning, you're groggy. I didn't really understand what she said.
So I tell my mom and my husband about it. And they had said, come back in two weeks, and we'll test her again. So we go back two weeks later, and it's kind of the same process. They did another-- well, actually, we were there for about four or five hours. They did multiple ABRs on her, and, every time, there was no response from either ear.
And so the nurses then tell me, oh, well, we've been having trouble with our machines. So that's maybe what it is. So, at first, they had said when she was newborn that it's probably fluid. Go back two weeks later. And then all of a sudden, well, "our machines are acting up." No one wanted to be the one to say it, right? So they told me that we would then need to schedule with an audiologist.
And this is something I tell everyone, because it really was the moment I knew for sure that she was deaf. But we left from the hospital after that second visit. And my husband put her in her car seat, and she was asleep. And we were in the middle of the parking lot by ourselves, and he got this far away from her face and screamed her name at the top of his lungs, and she didn't stir. And we were like, OK, yeah, because, of course, we're hearing parents. We're totally like, there's no way our kid is deaf. We've never even-- we've not encountered this.
So then we both knew, but we follow up with the audiologist. Again, we were there for probably four or five hours. She ran multiple tests, and she told me the same thing. She said, your daughter-- I have no response from either ear. I've tried multiple times. So at that point, we knew we needed to figure out what we're going to do.
I remember my very first thought when she told me, I was like, how am I going to be able to communicate with my own daughter? Like, that's terrifying. I was so overwhelmed. I was terrified. I was scared. So we, at that point, told our families-- because, at this point, our families, our extended family, had no idea that we were even going through this process.
We go, and we got a second opinion because, actually, our extended family was like, there's no way she's deaf. There's no way. We get a second opinion. She is.
So that's how we found out. It was a long process, and it was a whole lot of situations a lot of families come up against. Oh, well, it's fluid in the ear. Oh, well, our machines are messed up. And, oh, well-- and no one ever wants to be the one to say, OK, yes, your child has hearing loss. So that-- we had everything happen, I think, that you could. But we were able to get on the ball and get things rolling because we had our second opinion done by the time my daughter was a month old, so.
Now, does your daughter wear any ideological devices? She have hearing aids or implants?
Yes, so she is bilaterally implanted. She got her first implant on her right side when she was one and her second whenever she was two. That being said, she has always-- we had-- we being my husband and I. That's a whole other situation. But we've always signed with her from the time we found out.
We knew that even if she got the implant, for one, it may not work. For two, we knew it would be off, so she needed to be able to communicate from first until she got her implant. And three, we knew there was an option that she may not like them. She may hate them. She may not want them, and so we wanted to be prepared, as well as be able to give her the option.
So I actually have looked at her implants kind of different. I know that they're not popular. I know that there's a lot of issues. But the way that I've always looked at it is, I am enabling her to ultimately make the choice for herself. I felt if we went ahead and did the implants, when she's known to get the best benefit, when the surgery is easier on her, and we do all of the things, as well as always keep up with signing, have her exposed to deaf adults, get her involved in deaf culture as much as possible, then she can make that choice. I don't ever want to feel like I kept an option away from her.
So, this way, she can do it. And if she decides one day, I don't like this. I don't like hearing. I don't want to wear them, just don't put them on. Easy, easy as can be.
And then she already has ASL there for her, versus having to try to then learn ASL if she hates her hearing. So I've always just thrown the options, and we go with what works for her. Even though she was implanted, my daughter did not talk until she was three years old, did not talk. So we signed up until then, just signed.
She talks a lot, and she goes back and forth. Really, when she knows I don't understand her is when she really signs, and it's a very like-- [GRUNTS]
Right, right? This is what I'm trying to say.
Yes, yes. But she does wonderful. I mean, she goes back and forth. And right now this morning, we still don't have our ears on. She didn't want them on this morning, and that's fine. We can still manage, whether we have them or not. So that's my long way of saying, we've just thrown everything, because I don't feel like it's my choice to make. It's hers. It's that she is deaf, not me.
I wonder how you came to that realization, because that's very, very different from a lot of hearing parents of deaf children. Right.
So, me, I am a Type A personality, so I researched everything. I looked at everything. I wanted to know everything because, like I said, I've never met a deaf person until I had my daughter, so this was all brand new to me. So what I did-- and a lot of it was really hard whenever you go through reading some of the main things that can be said, no matter what you do. I had no idea.
The way I explain it to my family, it's almost like there's a war within that world, and I don't belong in that world. And so I was sitting there thinking, OK, if it were me, what would I think I would ultimately want for myself? And I think that I would deserve to make that choice. So I wanted to give that to her, and we have followed her the whole way.
So, like I said, today, I asked her if she wanted her devices on. She was like no. She's not really feeling good today. And so I'm like, OK, that's fine. And we respect her decisions on it, and we've always done that. And so I think that's what helped us, was we researched, we learned, and we put ourselves in her shoes. And I just-- I feel like, as my child, she deserves to have that choice, and it's not mine to make for her. It's not my life. It's not my choice, and I've always looked at it that way.
My biggest fear was, I did not want her to look at me one day and say, why did you try to fix me? Why did you not let me do this? Why did you not let me do this? Why did you not expose me to deaf culture? Why did you make me go with the hear-- I did not want to ever have to say, I don't know. I didn't even think about it. So I did think about it, and that's how I got there.
How has the deaf community accepted you and your family and your daughter?
So, actually, the very first deaf person that I met besides Tinsley was a very bad conversation. We were still learning, so Tinsley would have been one at the time, so we were still pretty basic with our sign language. And, of course, with her, she was still very basic with sign language too.
So we had told him-- we said, we have a deaf daughter. And he asked if she was implanted. And we said yes, because, at that point, she had just got them. And I'm glad I didn't know a lot of sign language at that point, because whatever he said was not very nice. It was not very nice. But we knew that. Like I said, we did our research. We knew. I understand why there's a lot of controversy with it. I get that. I understand why a lot of people feel the way they do. I totally get that, and I respect that.
So that was hard, and it kind of scared us away a little bit because we were afraid to put ourselves in the position to feel that way again, especially when we were signing with him to tell him Tinsley was deaf. And you could see in our view that we had made the effort to try to do both.
But, anyway, that took some time to get used to it, but I decided again-- I was like, this is not about me. This is not about my feelings. It's not about how Blake feels this is about her. So I had to put my big-girl panties on, and we went to silent dinners. And, luckily, I got involved with Hands & Voices, which I don't know if you know much about Hands & Voices.
But-- you don't, OK, so quick, Hands & Voices-- it's a parent group. We are all parents of children that are deaf and hard of hearing. And our motto is, what works for your child is what makes the choice right. OK, so basically, we are not biased one way or the other. We just want to support families so that they can do and make decisions and get resources for their kids, regardless of what they choose.
So I get involved with them, and we host a lot of events, and we do things. So that's really how I got involved with the deaf community. So we had silent dinners that I would partner with people on and things like that. So now, the deaf community here, at least-- they all know Tinsley. They love Tinsley. Tinsley loves being around them. I love getting to have that exposure to be around them.
And it took me putting aside, I'm scared. I know that my signing is not up to par. I know that I'm not where I could be. But, again, it's not about how I feel. It's her. So it's been really good. Like I said, it is scary. It's intimidating, but you just have to do it.
Have you gotten any negative feedback from hearing people about your bilingual approach?
Oh, yes. So that's where things get complicated. And to make it-- I don't know-- easy, we've not had support from extended family, as far as signing with Tinsley. It's been a big cause of contention between everyone.
What do they--
One of the--
What do they wish-- what do they think she should-- how do they think she should communicate?
The oral, because, literally, we had sign language classes held at our house prior to Tinsley getting her implant because, like I said, she deserved to have access to communication. So I explained to everyone about the implants. They may not work. She may not like them. She still deserves to be able to communicate with people, blah, blah.
And one of the family members said, this is a waste of time. Why are we doing this? She's going to be hearing in six months anyway. So they look at her as, she's hearing. Well, she's not hearing. She'll never be hearing. She is a deaf child that has access to sound through technology, but she's not a hearing person. She'll never be a hearing person.
And so the signing kind of stops within our house outside of that. A couple of people have tried a little bit, but there's no effort to try to sign with her, no effort to learn, and that hurts as a parent. And a lot of people don't understand why my feelings are so hurt about it.
But, at the end of the day, she knows who can sign. She knows where she feels most comfortable. And so she doesn't do a lot of the things like most kids. She doesn't stay at grandparents' house. She doesn't go, because I'm like, if something happens, you have to be able to communicate with her.
Right.
Yeah. So, anyway, it's been more of a battle within our extended family than those outside of the family. I've not had many people discourage us outside of the family. But inside of the family, I'm not even saying it's really discouraging. It's just there's no support. No support.
Why do you think there is no support?
Because it takes effort, you have to put yourself out of your comfort zone, you have to be willing to learn something new, and, most of all, they have to be willing to admit that Tinsley is different. She is different. Nothing's going to change that. There's nothing wrong with her. She's just different.
And so I think a lot of people stay in denial about things, and that's just never been-- my husband or I, that's not what we're about. She's our daughter, we accept her for who she is, and she was made the way she is for a reason, and we were never in denial about it.
Yeah, I want to share-- or just briefly with you, I've been doing these interviews with some parents. And I have actually friends that are here in this area. So I'm deaf, and my youngest son, when he went to preschool-- just randomly, his best friend is deaf. It's like, he just gravitated towards the little boy in class who was like Mommy.
So I've become friendly with their parents. And when I interviewed his dad, he said, you know, actually, Theo just said, Mom and Dad, I want to sign at school and speak at home. So he's going to the deaf school, where he getting just deaf edu-- and then he wears his hearing aids and talks orally at home, and that's working for them. And there's a lot-- did you ever get any feedback from doctors about language?
Well, not much. Her audiologist, I'm very thankful is very supportive. I know, again, that's not typically the case. We've been very fortunate, but I also think a lot of that comes down to, you as a parent have to be willing to stand your ground and let them know that you're not going to flex on it. And if you're not willing to flex on it, then I think they're more accepting of things.
But we honestly have not had much trouble. But, also, I would challenge anybody to give me any issues about-- because you can see she's successful. It's working. So if it's working, I don't see what the problem is.
So how old is Tinsley now?
She's 6.
She's 6. Now, does she go to kindergarten?
She's in kindergarten. So she's been mainstreamed. She started preschool at three. And so I was very fortunate, because she actually got three years of preschool.
I started preschool at three too.
Yeah. So we got three full years of preschool, which was great, and our school system was wonderful. The supports were there. She had a deaf language model, so her deaf language model, who she still has today. And I cannot tell you-- I tell her all the-- I'm like, I can't express enough how thankful I am for you, because she has-- I cry just talking about her. Tinsley needed her. So, anyway, she's had that. She has a teacher--
Well, how did-- so you said she needed her. How? How do you-- like in terms of--
So I know I'm not qualified to teach ASL. And what I've been having to do is kind of teach myself and show her. So she needed to have that true instruction from a deaf adult, which is hard to come by in Kentucky. We have nothing set up for deaf kids in Kentucky. It's awful. It's horrible. We're working on it, but it needs a lot of improvement, and so--
I'll help you too from over here. [LAUGHS]
Good. Wait, I mean it's atrocious, but that's a whole other conversation. But she needed that. She needed to see a successful deaf adult. She needed to see someone like her because, like I said, I don't know anyone else like her. So we've always had Miss Lisa. That's her name. And then she has a ToD. She had them every day in preschool, and then now, we've added an interpreter for kindergarten.
So she has all three of those supports at school, but our school system has been absolutely wonderful. And what we've asked for, we've gotten. What she needs is there, and she's successful because of it. I mean, she really is. So I'm very thankful. We're very fortunate because, again, that's not the usual. It's just not, unfortunately.
Yeah. So you have a whole network of other hearing parents of deaf children that you can rely on?
Yeah, so we-- it's a national-- well, it's kind of international now. But we have our Kentucky chapter, so we're all spread out throughout the state. So it's really nice because we have parents who have children that go to KSD. We have children who just use their devices. We have children that just sign. So we have a whole gamut.
So if I'm having a trouble or problem, I can talk to someone who has already been through it because their kid's 17 years old. Or I can help that parent who's just now starting out that's like, I don't know what to do. I'm scared. I'm overwhelmed. And I'm like, I've been there. I've been where you are. Let's go through this together. We can get through this together.
So that has been instrumental because you don't feel alone, and if you feel alone, I feel like that's when you kind of clam up, and you get scared, and you're afraid to get out of that zone. But I feel more comfortable to get out of my comfort zone because I do have that safety net there. So it's been wonderful. Oh, here's Tinsley.
[INAUDIBLE] You say hi? Who are you? [LAUGHS]
Hi.
She's the best.
She's off today?
I have her home. So she has a lot of additional health issues. So with COVID being so bad, she's homebound.
Yeah, wow. COVID, no fun. No fun.
Oh, no.
Well, we're expecting snow here in Connecticut. We're going to get hit with, like, 21 inches. So my boys are thrilled. Mommy doesn't shovel, so-- [LAUGHS]
My husband was stationed at Fort Drum for years, so he would get feet of snow. What military branch?
So Army.
OK, my husband's an Air Force veteran.
Nice, nice.
Yes, yes. He's hearing, obviously, so--
Yeah.
All right, I'm going to stop recording, unless you have anything else you can think of.
No, I mean, unless there's anything else you want to ask. Like I said, I'm an open book. There's nothing that I'm not willing to share, if you can't tell.
Well, perfect. Yeah.