AlleyCat

I absolutely understand what you're saying. It's the same issue I took with my parents. My preschool teachers, and K-2 teachers felt I was doing "way to well" to stay in a program with any accommodations. My parents listened to that, and that is why I got transferred to a mainstreamed, regular elementary school with no accommodations until 5th grade. And I'm profoundly deaf. Go figure ...

I think the difference, however, is between what you have described how well Li-Li functions with her CIs versus my HAs. I don't dispute in the slightest that she has better speech discrimination and other testing scores than I do. I take no resentment at that -- after all, if she can gain the most out of her CIs, then she certainly should.

So I think this is where the misunderstanding lies -- even with HAs, I was at best functionally deaf. I could not get enough speech discrimination. I could not understand teachers. I needed an ASL interpreter. If Li-Li is able to accomplish all that on her own, why do we call her functionally deaf? That's what I have trouble with -- it's just the terminology that I do. I would love to see a better choice of words used, if that makes sense..

Deafness

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GrendelQ

Let me ask something in a different way. Do you think our educational system should require that every child who is a candidate for a technological accommodation to take that path and to employ that accommodation continuously to receive an education based on those accommodated abilities? So, basically, do you think every deaf child who is a candidate should be required to receive and use a cochlear implant and obtain educational services based on the resulting classification as "functionally hearing."

I ask, because that's pretty much what people are arguing: that because my child can hear at a certain level in a booth with a technological accommodation, this should be the sole means by which she should receive her education, without the opportunity that she currently has to learn in two ways, with access to sound and without. As a deaf child, she can shift with ease into a voices-off environment, with her CIs off, without any gap in her learning experience.

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AlleyCat

First, let me ask you: who is calling her functionally deaf or functionally hearing? Is it you, or is it the school system? And which?

GrendelQ

I classify her as profoundly deaf, as do her doctors, and her school district. And all accommodations and school placements are made with this in mind. Several on this forum have argued that she should not be considered deaf, but instead should be classified by her hearing ability in a booth with CIs on, which is at typical hearing levels: using the term "functionally hearing" or "functionally HOH". I disagree with the use of this term.

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shel90

As an educator who works in the field of deaf ed, I have to agree because that is how we identify our students with CIs.


That's why I was so against with Fj's definition of children with CIs as "hearing". I had arguments with her about it.

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AlleyCat

And before I reply because I'm reading this remotely, how old is she again? 5? I just want to give the best answer possible.

GrendelQ

Turning 5 next month, she's been at a bi-bi school for the deaf for more than 2 years, spending part of each day in an acoustic access class of peers (a handful of children with CIs), with roughly half of each day spent voices-off in an ASL immersive environment with a broader set of deaf peers and instructors. She's bilingual, ASL was her primary language, she uses either English or ASL depending upon her environment/the language of those she's interacting with.

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faire_jour

Wirelessly posted

i have no idea who you are talking about but it sure as heck isn't me!! I do NOT think deaf kids with CIs are hearing, they are deaf. That can hear, but they are deaf.

if you search the forum you and easily see that i have never said anything of that sort. Please do not spread misinformation about me simply because you disagree with me on some issues. I hope you will retract that and clear it up.

GrendelQ

I've seen you post that pretty emphatically.

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deafdyke

ooooo...good point. And most school districts would say "if she's hoh, then she can get by with minimal accomondations approach" Since it's been the policy of most sped systems to minimal accomondate hoh kids.
Oh very true. But there ARE severe kids who are simlair to Li Li...not to mention auditory nereopathy kids too. And you're supposing that hoh= oral and minimal accomondation approach...Not always, and I think that may be changing. I know of an Early Intervention group in PA, made up of dhh kids of toddler going into preschool age. The parents of hoh kids want their kids to go to WPSD and the parents of deaf kids want them to go to DePaul! I think you're basing that on the old "uses a hearing aid well" sort of thinking which is what experts use to decide who's gonna get which services.
Um when did I say that they don't have academic programs? They do.....but the thing is...they are private schools so they can work on the really tough cases and make them easier for deaf programs in the mainstream to deal with. It's the public school vs private sped school. Private sped schools serve kids that mainstream programs can't serve very well. That is why you can get funding for a private sped placement through a public school. If the public school could serve the dhh kids through their oral deaf program (and there ARE oral deaf programs available) then they would without having to deal with the expense of sending them off to a very expensive oral private program.
And yes, right on jillo!!!! They want to mainstream as soon as possible so that they can be all " Yay! We've got sucessful dhh mainstreamed kids, so they don't have to deal with the added difficulties of later grades. Trust us faire joure.....it's not surprising they are doing decently early on.....but just wait a few years.

deafdyke

And faire joure...you think that getting services through a deaf School or program is hard? I really do think that your issues with trying to get good services had to do with a) Utah Schools for the deaf and Blind is not exactly a traditional disabled state school set up. It's mostly self contained classroom style or still finding its niche (in the case of your charter school that became a part of your state's School for the Deaf) and didn't have experianced speech therapists. Had you experianced a better set up (eg Maryland school, Govenor Baxter, ASD all kinds of Deaf schools) , you prolly would be RAVING about bi bi programs! Try fighting for dhh or blind/low vision or whatever "classic disabilty" accomondations at a mainstream school, that generally only has Resource Room style special ed or minimal accomondations for a solotaire kid. There is a REASON why there are still sizable Deaf Schools and dhh formal programs and dhh camps. I can pretty much say that many of the parents of the older solotaire mainstreamed kids are secretly asking themselves " Why cant there be a school for dhh kids, without having to go through this mainstream crap."
ALSO, if oral kids are doing so well in the mainstream, then how come their acheivement levels are so low? Students with disablities in the mainstream are at high risk for low achiement. Very few of them score high on acheivement tests for example.

AlleyCat

Sorry, I ended up taking a nap and never got back to the board last night. I think the classification of her being profoundly deaf is correct, as you have said. I think you and I will disagree on the functionally hearing part, though if she is doing so well with her CIs. If she is doing well at her school, is there someone there that's giving you a hard time about classification of her deafness? I think I have lost track of this, sorry. It's 4:30 a.m., the insomnia is back!

GrendelQ

I think she's deaf, she's classified for both medical and educatioal purposes as being profoundly deaf. It's only on this board that some think I'm wrong in considering her deaf and that children with CIs should be labeled as hearing or mild or moderate HOH (whatever the level she tests in a booth with CIs on) rather than as deaf children.

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BecLak

I agree. I was labelled that all my life until recently, when as an adult, I read the audiogram for myself. It's a half way place between Hearing and Deaf, a no-man's land. Anyone who IDs as Deaf then don't go there. It is more for people who want to ID as 'hearing'.

One deaf friend asked me "Do you ID as HoH? or Deaf?" - "I said I am severely-deaf. I am well past the range of HOH"

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dogmom

I have a mild hearing loss so ID as hoh. But also ID with Deaf cultural perspective and would prefer to sign more as opposed to speak since signing feels more natural to me and my speaking doesn't so easily. People can have trouble understanding me.

AlleyCat

I don't think she should be labeled as hearing just because she has a CI. We both know she's profoundly deaf. I consider the scenario to be that Li-Li seems to be functionally hearing if she can do well without assistance. I still need assistance (e.g. interpreters for staff meetings at work, I don't use a phone the conventional way, etc.) so I consider myself functionally deaf. But, I don't think you should worry about the terminology. If she is getting everything she needs from home and school, that should be all that matters.

deafdyke

I dunno. I think that hoh as a label can mean not quite deaf and not quite hearing.
Maybe a good term might be deaf with hoh abilty.

jillio

Yes, Grendel, you are absolutely the wisest, most well informed, perfect parent God ever put on this earth. Satisfied now?

Now please, can you stop interrupting discussions with your need to have everything addressed to you personally?

GrendelQ

Thought you had an issue with people telling others what they can and can't post?

You come out of the blue and argue with me for who-knows-what reason, contradicting me by insisting that my profoundly deaf daughter is not actually deaf and then complain that I interrupted the discussion? You really are being such a silly woman.

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deafdyke

Grendel what do you think of my new term? I actually think you're coming at this from an "traditional educational" label perspective.
You're right.......good CI/HA severe-profound/profound user is different from a kid who's a good HA user but still has residual hearing, and can VERY easily aquire English as a first language.
And wasn't Li Li's first language sign? I think there's a whole bunch of labels out there...eg CI user, but more on a TC level vs CI user oral only vs all sorts of combonations.

jillio

Exactly. It gives a mixed message, and ends in the child not getting the accommodations they need. And it isn't just parents. When the school system asks for the audiogram to document the need for accommodation, they asked for the aided audiogram (functional) and then make their decision of what will be offered based on that. And it is why I caution parents against saying things like, "My child is deaf, but she can hear...."

jillio

I'm not telling you what you can and cannot post. I am asking you to stop turning every thread into some sort of perceived insult made directly to you.

Actually, you are the one that started the argument over literal levels and functional levels, insisting that they were one and the same. But hey, no matter. Continue on with that belief. The public school system will be happy to educate you.

Just stop taking everything as a personal insult. The vast majority of the time my comments have absolutely nothing to do with you until you attempt to make them about you. Obviously you need to be told how wonderful you are as that is the only thing that you consider "supportive". So okay, I'll support you in your need to be told that you are a perfect parent who has learned more about deafness in a couple of years than anyone before you has ever been able to learn.

GrendelQ

I stated that my daughter is deaf -- you insisted that she's not and brought up the term "functionally HOH" as a label that should be applied to her. That's a term the public school district that has classified my daughter as deaf doesn't employ.

You obviously feel very strongly that other people's deaf children with CIs should not be considered deaf, and I know that my child is deaf and am very happy with how the school has classified her with regard to the amazing accommodations we're receiving. I don't think that we're going to come to an agreement on this, so why don't we just leave it be.

I agree with DD and think that the bi-bi programs that can support both ASL and English (written and spoken) won't be threatened by av and auditory-oral programs, and can provide amazing opportunities for deaf children who would otherwise be mainstreamed.

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deafdyke

Grendel, in defense of jillo, I think maybe she may have had a tough therapy session with a public school kid or frustration over public school issues, and is taking it out on you. I know you don't and can't really understand since you've gotten great accomondations at Li Li's current placement. Actually wait..Retract that..I know you understand a bit, b/c of your husband being a teacher. But to actually experiance it.....let me just say that I have a feeling that a lot of the kids who are being mainstreamed orally will return to TLC or to a regional dhh program b/c of all the ****ing crap with hearing schools.
Personally, I would consider Li Li to be Deaf with aided hoh abilty. If a hoh kid can also be Deaf, then a deaf kid could also be hoh. Except in this case, she has no residual hearing when she doesn't have her device on. There are severe profound deaf kids with HAs who identify as hoh too.
It really is sematics.
And you know.....MAYBE just maybe some of the parents who chose oral first as an option, might be more open to having their kid learn ASL sooner, since they won't have to worry about taking a few years for their kid's spoken language to develop, like they did in the old days. Unfortunatly, we'll still prolly have a lot of parents who think "oh my kid only needs speech. ASL is just for kids who can't speak well (not taking into account that while oral abilty is awesome, most orally skilled kids are lost beyond one on one situtions.
If Deaf Schools could produce kids who are bilingal in speech and sign, a lot more parents would prolly opt for them!!!

jillio

Who on this board thinks that it is wrong that you consider your child deaf?

All I am saying is if you consider her deaf, then be consistent in that, particularly when you are dealing with a home school as you will be in the very near future.

You are not the parent that consistently says, "My child is deaf, but she can hear." That is the sort of statement I was saying will result in not getting the services a child needs. And trust me, the mainstream school will indeed attempt to use "functional levels" in determining which accommodations are necessary. I see it all the time, and actually experienced it with my own son. And the workplace is even worse, not to mention SSA and SSDI and BVR.

The only reason you or your child got brought into this discussion was because you objected to my use of literal levels and functional levels without fully understanding what I was saying.

jillio

Nope, not a tougher than usual session, nor am I taking anything out on her. She took exception to my use of the terms "functional" and "literal" levels and made it something personal when it was not even close to that. She simply has not had the experience with the school system yet that would allow her to understand the way those terms are applied and used to deny services. It is in her best interest, and her child's best interest, to be aware of these things, but she will learn it the hard way as long as she continues to discount and argue about everything I say just because it was me who said it. If that's the way she wants to go about it, fine with me. But I thought she was here looking for support. The best support a hearing parent can get is to be aware of the pitfalls ahead.

deafdyke

Very good post. It does seem that unless a home school is experianced with dhh kids, they try to use the functional hearing level to go " Oh they can function, as a minimal accomondations kid ,they don't need all this "special stuff" and thus deny the student accomondations that could help them REALLY thrive. However, it does seem that Grendel actually GETS it...as she does want to keep Li Li at the Deaf School. Which is AWESOME!!!!!

jillio

Plenty of experience.

No, they don't.

jillio

Agreed. It is awesome that she wants to keep her daughter at the Deaf School. However, when her child reaches the age that the home school becomes directly involved in deciding placement, she will no doubt have a fight on her hands to accomplish that. It is a fight I fought for my son, it is a fight I have helped other parents fight, and it is a fight that is tough enough that many just give in to the school system. It is easy when all you are concerned with is EI services. The big battle is ahead. Parents need to be prepared for what they are going to encounter. If they wait until the time comes, they will be caught unprepared, and then the time the child spends in the mainstream while the fight goes on becomes longer and longer, creating more educational delays.

GrendelQ

EI governs up to the age of 3. From 3 on, placement is determined via the home school. I think this is national, but can only speak with certainty to MA requirements.

Li will be entering her 3rd year of educational placement governed by her home school district starting in sept. We've just had the IEP that determines this and the school has committed to and has budgeted for another year: going up to $75k tuition + $20-25k transport when my child turns 5 next month.

Our special Ed director in the home school explained that because placement is already established at a school for the deaf, this will not change throughout elem school unless we choose to change it. This was a pleasant surprise. Especially since there is a child with a brand new CI mainstreamed in the 2nd grade. We don't think there will be any concern until HS, when there will be 8 deaf children all governed by the same regional HS, and 3 of those kids currently attend tlc's soon to close Randolph campus (tc, unlike our campus's bi-bi program)

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