"In-between"

[JadeSkye]

I don't really know where to begin. I have posted a few times about my 3 year old daughter and her sudden (or seemingly sudden) hearing loss this past December. You can find those posts in the "parents" section if you like. I am posting this question/rant/what-have-you in this section because I think that this would fall under Deaf/HOH culture and issues.

Quick background: we finally had the sedated ABR done yesterday and it showed a moderate/moderately severe loss in both ears. (The audiogram starts at either 250 or 500hz and around 40db and slopes down to the right ending around 2000hz and 80db- I didn't get a copy of it then but next time we go back I will ask for a copy for my records, I basically memorized the begin and end points because I wasn't sure if they would give us a copy right away.) Her right ear is slightly worse than her left ear, except a the highest pitch where the left ear becomes slightly worse than the right. The audiologist who did her test (we have not been assigned an actual audiologist for her yet) sounded confident that hearing aids would "fix" things and that she will be fine to go to a mainstream school and just need speech therapy.

My issues: I am really not sure how "bad" her hearing loss is. In terms of being hearing or being stone deaf, it looks like she falls in the middle- she would be considered hard-of-hearing. I want to keep taking ASL classes like I have been (through our state Deaf school- Florida School for the Deaf and Blind) and I really think it would be beneficial for her to learn it as well and have a good basis in ASL and speech. I still want to look into sending her to FSDB as an option, because I honestly think they would probably offer a better education to her than our local school district (we live in a pretty rural area) and they understand working with Deaf/HOH kids. I liked the ENT and the audiologist we saw BUT they both came across to me as being a bit "audist" (the ENT talked about how great advances in technology are and how it could make her basically hearing and something about deafness being a disability (I had stopped listening for the most part to keep myself from saying too much- I understand the concept of deafness being a disability and to an extent I think it does make things harder for some but I don't really look at it as a majorly limiting disability) and then the audiologist basically said that she wouldn't need sign language OR the deaf school, she would do perfectly fine with hearing aids and mainstream school). I don't know if I have been reading too much and have "over-sensitized" myself to the worries of dealing with "audism" for my child (the rest of our family is hearing in case you need to know or wondered) or what. Then I was talking to my coworker today and telling her about the outcome of the test. I started telling her about the "audism" that I picked up on and she said something to the effect that I seemed to be resisting the idea that my daughter's hearing wasn't "as bad" as I had prepared myself for it to be (I always plan for the "worst" in a situation). I admit that since yesterday I have been fighting with myself about this idea "why are you still thinking of the idea that she should go to a deaf school and learn sign language- it's not "that" bad"... But I don't really think that my feelings are because I am in some weird way "disappointed" that she is not completely deaf... (Gosh this is hard to explain, and getting quite long- please bare with me and feel free to ask questions to clarify because I am really struggling with this right now!) I almost feel right now like it is going to be harder in a way for her to be hard of hearing than actually deaf because of issues like this. I am afraid that the hearing world will look at me like I am crazy for "imposing a deaf life (or something to that effect)" on a child that is "almost hearing". And I am afraid that the Deaf world is going to look at me as some kind of weird wanna-be or whatever, that is just looking for a reason to be a part of their culture (or something equally strange). I really feel like we are at an "in-between" space right now and I don't know what to do... SO- I guess I am just really looking to see what you guys think. Maybe there is someone on here that has been HOH like this as a kid and they have some insight into things. Or maybe you could just give me your thoughts on the situation (you can even call me crazy if you need to- if enough people do it then maybe it will help me make a decision ). I almost feel like I am spinning in circles faster than I was BEFORE we had the answers to how much of a hearing loss she has!!

 

[shel90]

Trust me, the Deaf world would not look at you as some kind of weird wanna-be. We have had many parents of deaf children become a part of our world so it is not a new concept.

However, yes, there will be people criticizing you for imposing the "deaf" life on your daughter but as long as your daughter develops fluency in language (ASL) without any struggles, grows up being who she is instead of being someone she is not , and a sense of a community, thats the most important thing.

I grew up orally and mainstreamed but I became truly happy when I finally learned ASL and found the Deaf community at 25 years old. Makes me wish I had that growing up.

Good luck!

 

[shel90]

(the ENT talked about how great advances in technology are and how it could make her basically hearing and something about deafness being a disability (I had stopped listening for the most part to keep myself from saying too much- I understand the concept of deafness being a disability and to an extent I think it does make things harder for some but I don't really look at it as a majorly limiting disability) and then the audiologist basically said that she wouldn't need sign language OR the deaf school, she would do perfectly fine with hearing aids and mainstream school).

40 years ago, my mom was told the same thing by my doctors. Boy, they were seriously wrong.

 

[MCB]

It is often easier to think in black/white. When you start seeing things in shades of grey, it requires more thinking/research. All children benefit from baby sign, and your daughter more than most. Having had an introduction to sign at an early age, it will be easier for her to learn it later should something happen to the rest of her hearing. As of now, she will probably be educated in the mainstream, with minimal supports/adaptations.

I find that the hearing world is stuck on lips are for kissing, and that is all they are good for. Makes it difficult for lipreaders. Since she will be raised hoh, and signing, comfortable with the Deaf world, she will have a good understanding of that form of audism. Don't tell her that HA's will make lipreading unnecessary, because they won't.

 

[JadeSkye]

MCB- I definitely agree that it is easier to think in black and white. I am usually a shades of grey person, I can see possibilities and look into things through thinking and research... A situation like this though, I don't really know what that "grey" area means... What school is the best option (deaf or mainstream) and why would it be better? There seems to be no middle road "culturally"- you are either Deaf or hearing... So- how do you choose which side to lean towards? Does that make sense? I am good with knowing that life isn't black and white (I see it every day at work) but this situation just seems to be a hard one to figure out what that grey area is...

 

[MCB]

There seems to be no middle road "culturally"- you are either Deaf or hearing..

Of course there is a middle road. I am not talking about culturally-- she makes that choice, once you have given her the tools with which to make that choice. I am talking about her unique abilities, which are yet to be explored and developed, and her use of those abilities to form her own nest in society.

Deaf or hearing? I am neither. I am HoH, and some day might consider myself deaf. That is my choice, and dependent upon my ability to learn more sign.

I refuse to think in terms of labels: they tend to obscure the uniqueness of each individual.

 

[deafdyke]

The audiologist who did her test (we have not been assigned an actual audiologist for her yet) sounded confident that hearing aids would "fix" things and that she will be fine to go to a mainstream school and just need speech therapy.

My issues: I am really not sure how "bad" her hearing loss is. In terms of being hearing or being stone deaf, it looks like she falls in the middle- she would be considered hard-of-hearing. I want to keep taking ASL classes like I have been (through our state Deaf school- Florida School for the Deaf and Blind) and I really think it would be beneficial for her to learn it as well and have a good basis in ASL and speech. I still want to look into sending her to FSDB as an option, because I honestly think they would probably offer a better education to her than our local school district (we live in a pretty rural area) and they understand working with Deaf/HOH kids. I liked the ENT and the audiologist we saw BUT they both came across to me as being a bit "audist" (the ENT talked about how great advances in technology are and how it could make her basically hearing and something about deafness being a disability

You are 100% correct. Just b/c she's HOH it doesn't mean she's "more hearing" then deaf. It just means she may be able to use her hearing aids well. She is just as Deaf as someone with severe/profound loss. I think you should look into FSDB....it's one of those schools that do have quite a few HOH kids there. It annoys me to no end that HOH kids are automaticly thought to be more hearing then Deaf. Virtually ALL HOH kids do get speech therapy and mainstreaming.....really hasn't helped us.

 

[deafdyke]

MCB- I definitely agree that it is easier to think in black and white. I am usually a shades of grey person, I can see possibilities and look into things through thinking and research... A situation like this though, I don't really know what that "grey" area means... What school is the best option (deaf or mainstream) and why would it be better? There seems to be no middle road "culturally"- you are either Deaf or hearing... So- how do you choose which side to lean towards? Does that make sense? I am good with knowing that life isn't black and white (I see it every day at work) but this situation just seems to be a hard one to figure out what that grey area is...

Then again HOH people can be just as Deaf as someone with severe/profound loss. The only reason you're even worrying over this, is b/c of an audist mentality that says that "hoh kids are more hearing then deaf" RME.
There is NO reason why hoh kids cannot benefit from a Deaf approach.
Here's my thinking............Send her to FSDB for a few years, so she gets a solid foundation for mainstreaming. She'll get HOH services (and the speech therapy will most likely be better then she'd ever get in the mainstream) but she'd also get Deaf stuff too............the more tools in the toolbox she has the better! I know a lot of audilogically HOH people who identify strongly as Deaf... I have no idea where the heck the idea that ALL a HOH kid needs is speech therapy, mainstreaming and How the Ear Hears came from. You gotta admit that the traditional Hearing Health 101 route (for hoh kids) is pretty damn boring.

 

[Jane B.]

Then again HOH people can be just as Deaf as someone with severe/profound loss. The only reason you're even worrying over this, is b/c of an audist mentality that says that "hoh kids are more hearing then deaf" RME.
There is NO reason why hoh kids cannot benefit from a Deaf approach.
Here's my thinking............Send her to FSDB for a few years, so she gets a solid foundation for mainstreaming. She'll get HOH services (and the speech therapy will most likely be better then she'd ever get in the mainstream) but she'd also get Deaf stuff too............the more tools in the toolbox she has the better! I know a lot of audilogically HOH people who identify strongly as Deaf... I have no idea where the heck the idea that ALL a HOH kid needs is speech therapy, mainstreaming and How the Ear Hears came from. You gotta admit that the traditional Hearing Health 101 route (for hoh kids) is pretty damn boring.

At what level are you talking about for HOH and needing services? It appears that you are lumping a great span of loss together. I would expect that there are some with a detectable loss but not need such things as speech therapy.

 

[JadeSkye]

Of course there is a middle road. [...]

Deaf or hearing? I am neither. I am HoH, and some day might consider myself deaf. That is my choice, and dependent upon my ability to learn more sign.

I refuse to think in terms of labels: they tend to obscure the uniqueness of each individual.

for the feedback... I guess I didn't really know how to throw my thoughts out there on this one, but you helped clarify it better. I know there IS a middle road, I guess I am just confused as to what that would be. I guess the middle road would be giving her ALL the tools (speech classes AND ASL, and sending her to the deaf school if she qualifies) and once she is older she can choose for herself how she identifies and where she feels comfortable... I guess I am just worrying about giving her the best life I can and the most opportunities I can (heck, I worry about that for her 7 year old sister too, and she is hearing).

As for labels- I try not to think in those terms much either, but sometimes it seems like that is the best way to get OTHER people to understand things... I guess I am just concerned that if she is "labeled" hard of hearing then people will think that she is "basically hearing" once she has her hearing aids... And how will that affect her education IF she IS mainstreamed?

MCB- Since you identify as HOH, what does that mean to you? Have you been HOH since you were a child? What was that like? I guess what I am really searching for here is for people's experiences and how you handle things because I am hearing and even though I try to put myself in her shoes I REALLY don't know what it's like and what she will be facing as she grows up. (Maybe I just think too much... Maybe I am trying to "plan" too much too...)

 

[MCB]

I guess I am just concerned that if she is "labeled" hard of hearing then people will think that she is "basically hearing" once she has her hearing aids...

That is where you will need to develop your advocacy skills. However, I think it would be unreasonable to expect the district to spend time teaching her sign; that would be your responsibility.

Since you identify as HOH, what does that mean to you? Have you been HOH since you were a child? What was that like?

My hearing loss became significant only about fourteen years ago, and was then a cookie bite. It is progressive, with Meniere's episodes. I am 63 now. So the fact that I used to be a school psychologist is most important.

 

[JadeSkye]

That is where you will need to develop your advocacy skills.

My hearing loss became significant only about fourteen years ago, and was then a cookie bite. It is progressive, with Meniere's episodes. I am 63 now. So the fact that I used to be a school psychologist is most important.

Guess I will just have to learn a different type of advocacy now (I work as a victim's advocate, so I know a little something about advocating for people).

Thanks for the feedback. Guess I just need to learn all I can about this so I can do my best advocating... Any suggestions on good websites or books to read about raising HOH kids?

 

[AlleyCat]

As for labels- I try not to think in those terms much either, but sometimes it seems like that is the best way to get OTHER people to understand things... I guess I am just concerned that if she is "labeled" hard of hearing then people will think that she is "basically hearing" once she has her hearing aids... And how will that affect her education IF she IS mainstreamed?

The "basically hearing" or "HOH" can get more difficult for receiving services. If it is thought that she's "hearing well enough" you will find a bigger fight on your hands for services for your daughter. I would be firm about her db loss (and it's okay to disclose to them her db loss WITHOUT HA's -- such as what happens if she has a day where her HAs are broken or not working and doesn't have that assistance?)

 

[MCB]

Sarcasm alert!

The "basically hearing" or "HOH" can get more difficult for receiving services.

In a black and white world, it all depends on who the person is, whether HoH is considered deaf or hearing.

 

[AlleyCat]

I was referring more to what the schools might perceive HOH or "basically hearing", not so much the family or the individual (the daughter, in this case.) And that the schools might put up resistance on providing specific services.

 

[CSign]

for the feedback... I guess I didn't really know how to throw my thoughts out there on this one, but you helped clarify it better. I know there IS a middle road, I guess I am just confused as to what that would be. I guess the middle road would be giving her ALL the tools (speech classes AND ASL, and sending her to the deaf school if she qualifies) and once she is older she can choose for herself how she identifies and where she feels comfortable... I guess I am just worrying about giving her the best life I can and the most opportunities I can (heck, I worry about that for her 7 year old sister too, and she is hearing).

As for labels- I try not to think in those terms much either, but sometimes it seems like that is the best way to get OTHER people to understand things... I guess I am just concerned that if she is "labeled" hard of hearing then people will think that she is "basically hearing" once she has her hearing aids... And how will that affect her education IF she IS mainstreamed?

MCB- Since you identify as HOH, what does that mean to you? Have you been HOH since you were a child? What was that like? I guess what I am really searching for here is for people's experiences and how you handle things because I am hearing and even though I try to put myself in her shoes I REALLY don't know what it's like and what she will be facing as she grows up. (Maybe I just think too much... Maybe I am trying to "plan" too much too...)

Supports and services are based on a child's individual needs, not based upon category of eligibility, so that "label" doesn't need to be a concern unless you want it to be. You live in Florida? According to their guidelines, a child needs to have an "educationally significant" hearing loss, not a primary category of eligibility of Deaf, which is unlike some other schools. So it would seem that if your daughter (?) wouldn't be hindered in any way if she is labeled as hard of hearing.

 

[caz12]

i got lot empathy with your position it so much easier to be one thing or other...my opinion for what it worth do ASL it will not be her first language as yet but may well be as she gets older.be great help if she can sign
i know of kids HoH given aids which these kids could not use brrought up with voice and life hard,they found deaf people went to clubs and learn bsl and now life is good...if do asl at home first then when at school be lot easey for her.you wont loose anything teaching asl but there lot to benifits

 

[MCB]

According to their guidelines, a child needs to have an "educationally significant" hearing loss,

That is with any condition. If it is not educationally significant, the child is not eligible for special education services. As in a learning disability-- defined by achievement in an area significantly below ability. If the child is gifted, or close to it, and achievement in an area is significantly below the ability level, but within the average range, and the student is not frustrated by that underachievement, the student does not qualify for services.

If a child is HoH, achieving well, but socially isolated, depressed, etc, then minimal special education services would be justified. This does not take into consideration the probability of preschool services, which are designed to reduce the possibility of needing services later. The preventive functions of preschool services are usually well worth the time.

 

[Deanne]

Her hearing is in my range, so I'll help how I can. I have one ear reverse slope and one sloped though, so not quite the same. Remember that everyone is different Your mileage will vary, and all that. With my aids, I can easily carry on a one-on-one conversation indoors. I can do ok in a small group if we're in a circle. In a classroom setting, I have a hard time hearing people behind me, so if someone asks a question I turn around to see who is talking. I was in Disney World a few weeks ago and heard nothing.

Without my aids is going to differ from hers a lot because I have one 'decent' ear in both high and low frequencies, so I'm guessing I hear better than she will. I can hear a car on the road, a plane flying overhead, crows, lawnmowers, etc. I don't hear many small birds, leaves, rain, etc. I usually have my aids in though, so it's hard to remember what I don't hear hahaha.

I was in speech therapy in elementary school and apparently speak just fine now. If I could have gone to a Deaf school, I probably would have jumped at the chance. She will learn English from you, from her friends, from TV, etc. She will not learn ASL on her own. In a hearing school she will always stand out because of her aids. However, I think she'd probably do just fine if they are willing to help her out with things that are difficult for her. I remember having an awful time in gym class, just could not hear what I was supposed to be doing with all those darn sneakers making noise. Until she's old enough to tell you what's not working for her, I would go to class a few days with her to try to see trouble spots.

Good luck!

 

[deafdyke]

That is with any condition. If it is not educationally significant, the child is not eligible for special education services. As in a learning disability-- defined by achievement in an area significantly below ability. If the child is gifted, or close to it, and achievement in an area is significantly below the ability level, but within the average range, and the student is not frustrated by that underachievement, the student does not qualify for services.

If a child is HoH, achieving well, but socially isolated, depressed, etc, then minimal special education services would be justified. This does not take into consideration the probability of preschool services, which are designed to reduce the possibility of needing services later. The preventive functions of preschool services are usually well worth the time.

This. You could argue that she will not get the specialized services that she needs at a mainstream school. Preschool/kindergarten at deaf/blind/other specialized schools tends to ROCK, and far outshine ANY public school offerings.