our story.

[goodonya]

Hi Courtneydang
It is a hard learning curve that you are on. The ladies roughing you up are much older than you. They know a lot and while I am irritated with how they are treating you they do know exactly where you are at.
They are thinking of your child with their big hearts, while they do not sound so big hearted toward you they do have some good advice.

 

[Courtneydang]

Hi Courtneydang
It is a hard learning curve that you are on. The ladies roughing you up are much older than you. They know a lot and while I am irritated with how they are treating you they do know exactly where you are at.
They are thinking of your child with their big hearts, while they do not sound so big hearted toward you they do have some good advice.

I suppose you may be right. Its a sad time we live in, when the first thought of these ladies is I made the informed decision to harm my daughter so I could raise a deaf kid. Its absolutely appalling to think someone would actually do that.
I beat myself up every day with just the thought that my decision may be the reason she's losing her hearing now.
But really, there's no way to know that they would have prevented it.
Because from my reading the damage to her outer hair cells wouldn't have been lessened with the tubes.




Posted from Alldeaf.com App for Android

 

[deafdyke]

it does serve a wide range of kids learning and behavior disabilities. It has a small dhh program with teachers better educated for dhh kids.
Ill be making calls to set up an interview..
In the mean time ill just continue my fight with her current school to make sure she stays on track.



Posted from Alldeaf.com App for Android

Oh, wow!!!!! That sounds like a perfect school! It sounds like the school version of the special needs preschool I was in 30 years ago.
Like it's a low incidence disabilities school? Maybe she can go there for elementary school. Also supplement with sending her to Austin, or other places for Deaf Camp. How cool is it that the school has a small dhh program?

 

[Courtneydang]

Quote:

Oh, wow!!!!! That sounds like a perfect school! It sounds like the school version of the special needs preschool I was in 30 years ago.
Like it's a low incidence disabilities school? Maybe she can go there for elementary school. Also supplement with sending her to Austin, or other places for Deaf Camp. How cool is it that the school has a small dhh program?

I'm not sure what a low incidence disability school is. When I searched dhh schools in my area, that one came up.
Its prek-grade 12, theres about 200 students, and 10% are dhh. I'm sure there is certain requirements to get in, and I'm not sure her hearing is to that level yet. I am at a complete loss when it comes to reading the audio report, from what I gather her right ear is borderline mild/moderate loss and her left is significantly worse.


Posted from Alldeaf.com App for Android

 

[caz12]

it when read stories like this i so glad i live under our nhs,you having to opt for no surgery because expence...lots of us complain about nhs but your health service or( lack of it unless rich)to me seems nearly inhumane in so called civerlized country...very sad

 

[CSign]

Sorry Botti, I disagree vehemently. We have had a major emphasis on HOH kids attending their Local School for DECADES now. Heck it was common when my grandmother was in school. It really hasn't made a huge difference as to achievement. Quality of neighborhood schools varies significantly. It IS a FACT that most even special ed teachers do not have a lot of training on how to teach low incidence kids. I'm not suggesting "ship her off to res school" But I AM suggesting looking into regional dhh programs, since they could benefit her a LOT.
And she is postlingal. She doesn't nessarily need speech therapy. Her speech is as good as its going to get. Her speech is never going to be like a hearing person's. So why put her through that if she doesn't need it?

Why do you write with such an authoritive tone, when you have absolutely no real information or facts to support your assertions?

You have no idea whether it not this child can improve her speech abilities, or whether or not she would benefit from speech.

I didn't read anywhere in the OP where she stated anything about her child being able to speak "like a hearing person". It seems like you have some obsession/fascination with individuals who are DHH talking like a "hearing person"- and it is only you who ever makes such ridiculous assertions.

Anything is possible, including this child developing intelligible speech if the hearing loss is not so profound that she cannot access speech frequencies.

Don't tell a parent not to pursue something when you have no foundation to base it on. It does a disservice to the child in question. You don't know enough to make any definitive assertions.

 

[Bottesini]

it when read stories like this i so glad i live under our nhs,you having to opt for no surgery because expence...lots of us complain about nhs but your health service or( lack of it unless rich)to me seems nearly inhumane in so called civerlized country...very sad

Except that it is all a lie. Medicaid, under which the child of the OP is covered, by her own account does provide for all these services for minor children.

The Early and Periodic Screening, Diagnosis and Treatment (EPSDT) Program.

EPSDT is the child health component under Medicaid (42 U.S.C. 1396a(a)(10)(A); 1396d(a)(4)(B); 1396d(r)). EPSDT services are mandated for children from birth through age 21. A state must provide to Medicaid beneficiaries under age 21 hearing services, including appropriate screening, diagnostic, and treatment, including hearing aids. Specifically, EPSDT covers the following medically necessary audiological services for children who are at risk for hearing impairment:
Audiological assessments;
Hearing aid evaluation; and
Medically necessary hearing aid services, including hearing aids and hearing aid accessories and services.

These hearing services must be provided periodically at intervals that meet reasonable standards of medical practice.

Because of this national requirement for coverage of children, the compilation below delineates only the Medicaid coverage for adults.

Medicaid Regulations | Hearing Loss Association of America

 

[CSign]

To the OP: does your child have an IEP? It does not sound like it, and if she did have an IEP she would have appropriate accommodations to access the curriculum. Also, it is my understanding that Texas has great DHH programs. So, get her officially diagnosed along with hearing aids so that she doesn't need to have you yell at her or cup her ear to hear you.

 

[Courtneydang]

Except that it is all a lie. Medicaid, under which the child of the OP is covered, by her own account does provide for all these services for minor children.

so now you are calling me a liar?
when she was 3, and we first found out about her MILD hearing loss, which i might mention yet again, TUBES PROBABLY WOULDNT HAVE HELPED, she had private insurance. all of the pediatric ENT's in the city were "out of network" insurance would ony have covered $11 of the doctors bill, leaving the hospital bill and the anesthesiologist bill 100% up to me. we also lived in kentucky then.
she has only been on medicaid for the past 2 years. after about 18 months of not having insurance.

To the OP: does your child have an IEP? It does not sound like it, and if she did have an IEP she would have appropriate accommodations to access the curriculum. Also, it is my understanding that Texas has great DHH programs. So, get her officially diagnosed along with hearing aids so that she doesn't need to have you yell at her or cup her ear to hear you.

we only got the diagnosis on december 27th. the schools are closed until next week. and we have another doctors appointment the week after that.
for some reason unknown to me the audi we saw last week didnt say anything about hearing aids.

 

[Bottesini]

so now you are calling me a liar?
when she was 3, and we first found out about her MILD hearing loss, which i might mention yet again, TUBES PROBABLY WOULDNT HAVE HELPED, she had private insurance. all of the pediatric ENT's in the city were "out of network" insurance would ony have covered $11 of the doctors bill, leaving the hospital bill and the anesthesiologist bill 100% up to me. we also lived in kentucky then.
she has only been on medicaid for the past 2 years. after about 18 months of not having insurance.


.

I am going by what you said about her being on Medicaid.

And the surgery for tubes is not that expensive either, even if you covered it yourself. Plus hospitals have charitable programs that will cover costs for people who can't afford it.

Be as defensive as you want, but your kid is the one who is going to live with the results of your decisions.

Actually we have a moderator here who lost his hearing the same way. The mother did lose custody and he was adopted, but he does still seem pretty bitter about it.

 

[CSign]

so now you are calling me a liar?
when she was 3, and we first found out about her MILD hearing loss, which i might mention yet again, TUBES PROBABLY WOULDNT HAVE HELPED, she had private insurance. all of the pediatric ENT's in the city were "out of network" insurance would ony have covered $11 of the doctors bill, leaving the hospital bill and the anesthesiologist bill 100% up to me. we also lived in kentucky then.
she has only been on medicaid for the past 2 years. after about 18 months of not having insurance.

we only got the diagnosis on december 27th. the schools are closed until next week. and we have another doctors appointment the week after that.
for some reason unknown to me the audi we saw last week didnt say anything about hearing aids.

I guess I'm just as confused as the others. Didn't you just say she was diagnosed with a mild hearing loss at 3? Why wasn't she aided then? Is it because you didn't want to consent to a simple procedure where they put tubes in her ears to drain the fluid so that her hearing would improve?

What was the recent diagnosis you got?

 

[Jane B.]

hi guys! my story is kinda long.
My daughter is now 6 years old and has been losing her hearing since she was 3. no doctors, ENT or audiologist seems to be able to tell me why or if she will eventually loose all of her hearing.
she first saw an ENT when she was almost 3 years old,(for recurring strep throat) he said she had about a 30% hearing loss in her right ear and 10 in her left, it was probably caused by an ear infection that got left untreated and scared her ear drum. he said tubes may or may not help, and it would probably resolve its self before she started kindergarten. so i opted not to do the tubes, mostly because i couldnt come up with the money to do it. insurance only covered $11 of the entire surgery. thats another story for another day.
the beginning of her kindergarten year was fine, she would occasionally get in trouble for "not listening" or being loud, but nothing outrageous. she was an only child that had never been to day care so being rambunctious was to be expected i suppose. towards the end of the year it was noticeably worse, she was constantly asking me to repeat my self and cupping her hand around her ears. so we were back in the doctor who really didnt say anything, we couldnt get a referral to an ENT because she wasnt getting ear infections.
so in the past six months its alot worse. she cant hear unless im directly in her face and speaking quite loud and shes lip reading as best she can. if she cant see me, unless im yelling, she doesnt even know im speaking. her spelling is far behind, shes spelling what out lips say "wet" when you say "went" and her speech is starting to sound the same. she has the volume on the tv all the way up and with the sub titles. we were in the audiologist this week and he offered no explanation or solution. he said she had "moderate conductive hearing loss, abnormal acoustic reflex and abnormal outer hair cell function". but didnt explain what any of that meant or what i need to do now. i left with more questions then answers. now im trying to get her to an ENT to try to figure out what we need to do.
its been a not fun adventure.
we are trying to learn how to sign to make communicating a little easier at home. and i have no idea about what to do at school. shes a brilliant girl, but she cant display that at school because she cant hear the instructions. and the teacher just gets short with her and she ends up in trouble when shes asking for instructions to get repeated. ive already had to switch he teacher once.
so here i am. where do i start, learning how to sign in adulthood, and teaching her? any advice or where to start with anything would be greatly appreciated.

I guess I'm just as confused as the others. Didn't you just say she was diagnosed with a mild hearing loss at 3? Why wasn't she aided then? Is it because you didn't want to consent to a simple procedure where they put tubes in her ears to drain the fluid so that her hearing would improve?

What was the recent diagnosis you got?

I think a lot of this is because those that are judging what was done are a lot more familiar with what is normally done than the OP. Besides that she is contending with Medicaid. From what I added the bold to it looks to me like she didn't know it was a simple procedure and that the doctor really didn't explain what a difference it could make. What would all of you have done if you were told "it would probably resolve its self before she started kindergarten." at a time when you were already strapped for cash?

 

[CSign]

Um Rocking, it started out as MILD....and it sounds like the mild that you can compensate for.

Is cupping the ear the type of compensation you are referring to?

 

[CSign]

I think a lot of this is because those that are judging what was done are a lot more familiar with what is normally done than the OP. Besides that she is contending with Medicaid. From what I added the bold to it looks to me like she didn't know it was a simple procedure and that the doctor really didn't explain what a difference it could make. What would all of you have done if you were told "it would probably resolve its self before she started kindergarten." at a time when you were already strapped for cash?

I'd like to say first and foremost that I am not judging the OP.

With that said, it is the responsibility of parents to do their homework and ask questions.

If a child has enough fluid in the middle ear to warrant tubes, it would be incredibly irresponsible (and potentially negligent) of the doctor to say that it "would probably" resolve itself by kindergarten (2 years). That is a critical time in a person's life to acquire language, and the issue could have been rectified by (at the least) placement of tubes.

I would have done things different, but that's me. Like I said, I don't judge others. But I also don't let others (or money) dictate what I do (or don't do) with my child.

The past is in the past, and you (the OP) can now work to ensure that all of your daughters needs are met. No use crying over spilled milk. It's already done, so now is the time to clean it up. Your daughter will thank you for it and I think you will feel better about things too.

 

[Courtneydang]

I am going by what you said about her being on Medicaid.

And the surgery for tubes is not that expensive either, even if you covered it yourself. Plus hospitals have charitable programs that will cover costs for people who can't afford it.

Be as defensive as you want, but your kid is the one who is going to live with the results of your decisions.

Actually we have a moderator here who lost his hearing the same way. The mother did lose custody and he was adopted, but he does still seem pretty bitter about it.

she IS on medicaid NOW but she Wasnt then. my cost to cover the surgery would have been about 2grand, i applied for a care credit card and wasnt approved. i had no way to come up with it.
but im done talking and explaining the same thing over and over to you, apparently your lack of hearing has effected your ability to read.

I guess I'm just as confused as the others. Didn't you just say she was diagnosed with a mild hearing loss at 3? Why wasn't she aided then? Is it because you didn't want to consent to a simple procedure where they put tubes in her ears to drain the fluid so that her hearing would improve?

What was the recent diagnosis you got?

she had very mild loss at age 3, it didnt effect her communication or speech. i made the best decision at the time with the information i had. ill say it one more time. the ent was pretty confident that the wouldnt do much good.
she showed NO SIGNS of farther loss until september/october this year.
she was diagnosed moderate conductive hearing loss. bilaterally on December 27.

I'd like to say first and foremost that I am not judging the OP.

With that said, it is the responsibility of parents to do their homework and ask questions.

If a child has enough fluid in the middle ear to warrant tubes, it would be incredibly irresponsible (and potentially negligent) of the doctor to say that it "would probably" resolve itself by kindergarten (2 years). That is a critical time in a person's life to acquire language, and the issue could have been rectified by (at the least) placement of tubes.

I would have done things different, but that's me. Like I said, I don't judge others. But I also don't let others (or money) dictate what I do (or don't do) with my child.

The past is in the past, and you (the OP) can now work to ensure that all of your daughters needs are met. No use crying over spilled milk. It's already done, so now is the time to clean it up. Your daughter will thank you for it and I think you will feel better about things too.

if the ent had told me "tubes will definitely prevent future hearing loss" i would have sold my soul to the devil to make sure it was taken care off. but no. he confidently told me "the damage is done, tubes probably wont do much good because shes older and not going to get ear infections often" and she hasnt. shes had maybe two or three ear infections since then, i kept up with her allergy shots until we moved to texas, and her new alergy test said she doesnt need them anymore. she hasnt gotten strep throat, shes hardly been sick.

 

[deafdyke]

Is cupping the ear the type of compensation you are referring to?

No. I know it's very difficult to believe for hearing people, but you can COMPENSATE for a mild loss by SPEECHREADING!!!!! That is how dhh kids managed to fool hearing parents for years and years.
Granted for a formally hearing kid, they might not realize they can compensate for hearing through another sense....and I do think if a kid is cupping their ear to hear, they might need a hearing aid. But her mom doesn't say if she did it regularly or once or whatever..........

 

[deafdyke]

Ummmmm you guys are assuming that she has the type of loss that was caused by not having tubes. How the heck do you not know it wasn't just a plain old progressive loss due to an unknown etoilgy?
Tubes may have helped, or they might not have. We don't know! But she DID have a very mild loss even BEFORE the question of tubes came up, which makes me think that she might have a progressive loss unrelated to not being treated for tubes.

 

[deafdyke]

Why do you write with such an authoritive tone, when you have absolutely no real information or facts to support your assertions?

You have no idea whether it not this child can improve her speech abilities, or whether or not she would benefit from speech.

I didn't read anywhere in the OP where she stated anything about her child being able to speak "like a hearing person". It seems like you have some obsession/fascination with individuals who are DHH talking like a "hearing person"- and it is only you who ever makes such ridiculous assertions.

Anything is possible, including this child developing intelligible speech if the hearing loss is not so profound that she cannot access speech frequencies.

Don't tell a parent not to pursue something when you have no foundation to base it on. It does a disservice to the child in question. You don't know enough to make any definitive assertions.

CSun, even late deafened people may have deaf speech. I didn't either, but the IMPLICATION with speech therapy is that a dhh person can have perfect speech. If her language was behind, I'd be ALL for the therapy....But you are NOT even HOH. I suggest you put on a pair of earplugs while trying to learn how to pronounce words in a foreign language. This child's speech DOES sound overall intelligible. It's not like everyone's saying " I can't understand her speech!" It sounds like she's at the level where a lot of HOH kids are in intelligbailty!

 

[deafdyke]

I'm not sure what a low incidence disability school is. When I searched dhh schools in my area, that one came up.
Its prek-grade 12, theres about 200 students, and 10% are dhh. I'm sure there is certain requirements to get in, and I'm not sure her hearing is to that level yet. I am at a complete loss when it comes to reading the audio report, from what I gather her right ear is borderline mild/moderate loss and her left is significantly worse.


Posted from Alldeaf.com App for Android

Low incidence disability means a disability that you wouldn't nessarily see all too often in the public schools......and even some that are seen a lot , but they are severe. The problem with public schools is that while they're good at educating learning disabled students (ie dyslexia, ADD etc), as well as low incidence kids who may only need minimal accomondations, they're not great at educating low incidence kids. These are kids who are smart and can learn, but b/c mainstream teachers get minimal training on how to educate that population, they very often fall through the cracks. It's awesome educators have realized that maybe this population might need specialized education in order to succeed. Also awesome that you have that resource!
That is AWESOME that 10% of the students are dhh! It does seem like dhh programs are getting a lot more flexible with letting HOH, even mildly HOH kids in. It's not like you're trying to get a unilateral loss kid into the program. You want ASL fluency and other dhh peers as well as teachers who are familiar with how to teach dhh kids right?
Your experience with public school hasn't been that great....you can argue that her teachers aren't trained to teach kids like her. She is also at risk for progressive loss......I know a lot of HOH as kids adults, who lost their hearing....they're OK with it, but they just wish they'd gotten the chance to be fluent in ASL, instead of a HOH style minmal accomodnations approach.

 

[Courtneydang]

Ummmmm you guys are assuming that she has the type of loss that was caused by not having tubes. How the heck do you not know it wasn't just a plain old progressive loss due to an unknown etoilgy?
Tubes may have helped, or they might not have. We don't know! But she DID have a very mild loss even BEFORE the question of tubes came up, which makes me think that she might have a progressive loss unrelated to not being treated for tubes.

THANKYOU!
granted i dont know much about how ears work, but from my understanding, the damage to the outer hair cells, wouldnt have been prevented.
also, the ENT said an untreated ear infection "possibly" caused the stiffened ear drum when she was three. BUT she had strep throat every other week, so i think her pediatrician would have noticed an ear infection bad enough to have damaged her eardrum. she had only One ear infection up to that point. and even if she had more, they would have been treated by the antibiotics for the strep throat.
its not like i ignored my kid and just let her be sick.

oh i might mention she was born with an uncommon growth restriction. there is no "proof" that her growth disorder causes, or doesnt cause hearing loss. for all i know THAT is the ultimate reason behind it.