Before I start, yeah, let me record. Because I told her I was going to record, but I almost forgot to turn that on. So that would have been fun. OK, so tell me about your family journey please.
OK, so my husband and I have three children. The first two children are significantly older than our last-- 18 years apart from our first to our last. And when our youngest was 13, I found out I was pregnant and we had our daughter.
And there was no diagnosis of any sort of issues with hearing, anything like that at birth. But by age two, she was not communicating as what I was used to with my two older children. She had very little language and was starting to have some behavior problems that seem to be frustration-linked.
And so we took her for an evaluation through a recommendation from our pediatrician. And they diagnosed her at that time with a speech delay. And they immediately began services, probably within five or six weeks of her second birthday. And they taught her some basic sign language, which she took to and used immediately, and just some coping skills.
She was getting occupational therapy. We took her to John Tracy Clinic for a more advanced hearing screening, and it was inconclusive. They really couldn't find anything wrong at that point. So we continued services. At three, she entered our local school district and continued services there. She attended every day.
And she got speech services, occupational therapy services, and she also received preschool-type schooling. And then, at age six, she started general ed kindergarten. And she was screened in the fall of that year. And actually, the school nurse said that she had a failing grade on her hearing test.
And so I scheduled an appointment with an audiologist, and they did a full workup on her and discovered that she had bilateral hearing loss and recommended hearing aids. So that was kind of where our journey started. We work towards getting her hearing aids at that point. So she was almost six years-- just a hair before her sixth birthday.
It would help if I unmuted myself, wouldn't it?
Now, what language do you use in the home currently?
We speak English in the home.
OK. Now, does your daughter sign still or not at all?
Well, at the time, no. So when she was-- she is currently 13. So when she was about 10 years old, I started actively looking for someone to teach her ASL-- actually, at first, her and I. I looked for classes for her and I could learn together.
And then I actually found someone that is-- took ASL. She's a hearing person that took ASL, and she is fluent. And she's assisted others to learn ASL. So my daughter attends weekly classes with her to learn ASL.
And then we found church services in ASL for her to attend prior to COVID, where she went almost weekly where the entire service was held in ASL. So she became pretty fluent and really learned to communicate. And you could tell it just-- it's her language. It really works for her.
So the hearing aids allow her to attend general education with speech support. But I can tell that just the language of ASL is how she processes communication with others.
What prompted the interest in learning American Sign Language?
Well, to be honest, I saw how well it affected her when she was two and three years old and her basic signs that she learned. And then, our concern as parents was that until about her eighth or ninth birthday every year, as she had her annual hearing test, her hearing was degrading. So we were concerned that at some point she might not benefit any longer-- she is not eligible for implants, because she has a nerve issue.
It's not an ear issue. It's her nerves that don't work properly. They don't transmit the signals properly. So if hearing aids don't assist her, then she will be, essentially, deaf and unable to communicate if she doesn't have a language.
How is that for her-- now she is mainstreamed, correct?
How is it for her being in a hearing school? Does she have an ASL interpreter with her?
So basically until she started learning ASL on her own, her whole communication was, like you said, aurally. She learned-- yes. And that was the other thing we discovered in testing is she learned to lip read. So even though they said children her age couldn't do it, when they tested her, she had an 80% plus that she could do that.
So that what prompted us more was, like I said, we were concerned at some point she might not be able to access that anymore. And she had a real interest in it. We had an interest in supporting her as a family to try to learn some basic signs and just support that-- give her a link to her community. Because the deaf community is going to be her community.
It's not putting hearing aids on a hard-of-hearing kid and now she's hearing. It's a different-- I have come to learn, because I didn't know a lot before we had her. But I really-- as a family and myself personally, really took the time to try to educate myself, because I don't want her to feel like we're pushing her into a mold she might not feel like she fits in.
That is an excellent point. And she's lucky to have a family that supports that. Now, is everybody-- is anybody else in the family interested in learning to sign with her? Because I know that you mentioned that you were taking classes, and then-- now are you start taking classes with her?
No. I am not taking classes with her. And to be honest, I really should be-- we have basic signs we use amongst us, and everybody's willing to do more. It's just at this point, I think as a family we're so used to communicating the way we always have that there hasn't been a push. But certainly, at some point if she wants to make ASL her main language, then we're going to have to be able to communicate that way. And that will be her choice.
That will be her choice. So my question for you is, what kind of feedback did you get from doctors and audiologists in terms of her diagnosis and the best interventions for her? Could you just explain a little bit more about the general feedback that you got from the doctors?
So doctors and audiologists-- anybody that was a support staff-type person-- we were really well supported. We live in a community here in Southern California that is very proactive for inclusion of disabilities, of lifestyle, whatever. It's a very-- it's that kind of community.
So we weren't facing any problems. Everybody was like, here's what I specialize, here's how I'll help you, here's where I'll point you to help you do something else better. The problem we found is she has no other disability. She completely tests for general ed.
As a matter of fact, she apparently has-- she's intelligent. I mean, she does well in school. And the problem we had was general ed teachers having a concept of how to support her. That's been the hardest thing we've had all through the years. For the most part, other than a couple of missteps a couple of years, it's been pretty supportive and understanding.
But we advocate for her, too. If there's a problem, we step right in and say, hey, you need-- and our audiologist, the school audiologist, is fantastic. As a matter of fact, I nominated for her an award, because she will get right in there with that teacher and say, do you understand that this is the support she needs? How can I support you to support her? So I can't complain about our journey at all. We, here in this community-- and I know that's not true of everywhere else.
So where are you in Southern-- my sister-in-law is in Coronado.
We're in Redondo Beach, California. So we're south of Los Angeles.
OK, so you're in between-- yeah. You're north of where my sister is. She's near San Diego. Yes, that is correct. We're north. Yeah.
Excellent. So what do you think are things that you learned along your journey that you think other hearing parents of deaf or hard-of-hearing children should know? Like the [? do ?] that you wish somebody had sat you down and told you at the beginning of this journey.
I think the biggest thing that parents-- obviously, the diagnosis of realizing my child was hard of hearing, perhaps, heading towards deafness and needing hearing aids and might have to navigate through life that way was shocking and overwhelming at the time.
I think what would really help support parents is understanding that culture-- the deaf culture, the hard-of-hearing culture-- is not providing hearing to a child with that disability. It's a different culture.
There are different needs. There's different communication styles. She processes information completely different than my other two children did. And that, I think, is the most-- and as a parent, you have to immerse yourself. You have to search that out and figure it out to be of service to your child.
And I think that's maybe part-- that missing piece-- when there's a diagnosis given. Here's what the medical situation is, but here's the emotional part that you as the parents need to support and understand. And I think that was the missing piece.
Yeah. And I have to tell you that I agree. Because I also-- I work with other therapists. I work with deaf and hard-of-hearing adults and teenagers, and I see that. And I see that a lot of families tend to focus very much on-- not necessarily language, but spoken language, to the detriment of a lot of other basic skills. And it's heartbreaking.
Yeah, I could see how frustrated she would be if that was our focus is just to get her mainstream, mainstream, everything, because that's just not who she is.
Now, you said that you had never really had much experience with deafness prior to having your daughter. Correct.
How did you find out about the deaf community?
Several way-- I did a lot of research. I did a lot of reading, and then and working with her ASL teacher who is a hearing person that learned ASL and kind of immersed herself in that community. She was a great resource, because she enlightened me to a lot of the-- just the way that that communication is very direct. And some people, in an English speaking situation, like some of the ways that she-- especially as a child connecting with an adult-- can almost be perceived as rude. But it's just direct, because that's how she processes.
There's not-- like for her, as she learned language, nothing was an adjective. Everything was a noun or a verb. It either moved or it had a name. It wasn't described. So when she started communicating with other children or adults, she didn't have those nuances of language like a child-- a seven-year-old would have, an eight-year-old, and a nine-year-old would have, because she didn't learn that. It wasn't natural to her.
She didn't pick it up naturally.
Yeah. So that really helped me. It's just my own research, my own observation, getting to know people that had more familiarity with the community enlighten me as to what I was seeing.
Would you say that it was easy for you to access services, or did you have to make it a point to make sure that you were offered services?
Kind of a combination. So public education services are based on testing. But that's not necessarily the best services the child needs. So there has been some push to get more time, additional time, don't cut out time to get her support.
And it's just the kind of-- for lack of a better way to say it-- nature of the beast. If you don't advocate for yourself and for your child-- and like I said, we're in Redondo Beach. We have a great school district. They are very in tune to service providers for your child.
But they're also locked in to what an offer of FAPE is. It is what it is. So they're kind of limited. So fighting with our insurance company to try to get services-- that was really wonky. And then with the school-- the school district was easier than the insurance company.
So it's like, if you don't advocate, you're not going to get what you need. And to me, it's appalling that they do not cover hearing aids under hardly any insurance coverage. Nothing that my employer has.
That was going to be my next question. Yeah, hearing aids-- like you said, she wears hearing aids. And I know that if she were implanted, the implant would be covered by insurance.
That is correct. So I have my own feelings about that as a hearing aid user. But I'm wondering how you feel, as a hearing person who has a hard-of-hearing daughter who needs this equipment and insurance companies won't cover it.
It's appalling. It's appalling. If she had eyesight issues, needed 3-inch glasses, those would be covered. But because she has a hearing disability, you don't cover anything?
Or you go-- this is the other experience I'll share with you is our insurance offered a discount if you used a certain agency to provide these hearing aids. It was the worst doctor-type experience I've ever had. The person did not address her, try to comfort her, ask her anything about her opinion. Basically it was like check the box, check the box, let's do this, let's do that.
And my husband and I left there and said, I don't care if we pay full price-- which we ended up doing. But we found an audiologist who is-- we still have her. She's wonderful. And we paid cash out of pocket to keep her and service our hearing aids, because she cares about the children.
She takes all the time it takes to comfort them, adjust, to make sure they're comfortable. She's priceless. And the insurance-- what the insurance company provided was just-- it was awful. It was a terrible experience.
Well, I'm very sorry that that happened to you. You're really-- I'm glad that you have an excellent audiologist. Because I also had an excellent audiologist growing up. And actually, my sister still sees her. My sister is hard of hearing. And they kind of become family after--
Yes. Yes, she's watched her grow since kindergarten, and she's now in seventh grade. So it's every year, you go in, catch up. Every six months we take her hearing aids in and have them serviced and make sure they don't need something.
So I mean, that's been a great relationship. But I had to search that out. It's not just out there offered to you. You have to search everything out as a parent.
And sometimes, that's hard for a parent if they don't necessarily have the resources. Thank you so much for being willing to spend some time talking to me. I might have some more questions, but I don't think so. I mean, do you think that-- is there anything else that I should probably know?
You covered it pretty thoroughly. And if you think-- if there's any other part of this process that we could help you with, if you ever need to speak to my daughter or you want to speak to me again, please reach out to me. We would be happy to assist you. We love the fact that somebody is seeing the problem and working to change it.
Because like you said, we're fortunate. We live in a community that we can access things. I can imagine if we lived in a small town or an area that didn't have that low-incidence disability, that there's nothing. And that's just horrifying to me, because these kids-- they deserve everything that everyone else gets.
And sometimes it's hard, because even though it's not an invisible disability, like up here, it is an invisible disability. And the world treats you very differently when they realize you can't hear.
That's right. Yes, I agree.
So I'm going to stop recording.