our story.

[Courtneydang]

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.

 

[deafdyke]

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.

What state are you in? Contact your state's Deaf School.....She might be able to attend there, if it is close. There might also be magnet or regional dhh programs near where you are.....Those are really good for HOH kids. I see you've already discovered the frustrations of the public school system. Unfortunatly, most public school systems aren't well trained in how to teach dhh kids. Most of the time even the special ed teachers just get a minimal amount of training on how to teach us. I really think you should definitely look into a dhh program. She can learn Sign, meet other kids like her, and learn from specialized teachers, as well as have the advantage of a mainstream school that is familiar with how to teach kids like us......
It's good you're learning sign. Some postlingal kids love it, others not so much... but it's always good to give a kid Sign as an option.

 

[Bottesini]

If she has a moderate, conductive loss, why doesn't she have hearing aids?

If you can't afford them, contact Starkey Hear Now, or your local Lion's club.

With that type of loss, aided, there is no reason why she shouldn't be able to function very well in her local school.

She should also be in speech therapy in your local school system. You should take documentation from your doctor, and she should have an IEP.

 

[deafdyke]

With that type of loss, aided, there is no reason why she shouldn't be able to function very well in her local school.

She should also be in speech therapy in your local school system.

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?

 

[deafdyke]

shes a brilliant girl, but she cant display that at school because she cant hear the instructions.

Keeping her at her neighborhood school will just have her doggie paddling. She might thrive and be a superstar....but simply b/c the teachers are not well trained to teach dhh kids, she probably wouldn't. Placing her in deaf ed/dhh program will most likely give her the tools to REALLY thrive in all areas. Remember it's not just deaf kids who struggle in the mainstream. Very often it's HOH kids too. It's important to remember that HOH kids can benefit from Deaf ed too!!!!!

 

[deafdyke]

With that type of loss, aided, there is no reason why she shouldn't be able to function very well in her local school.

It's also about the big picture. An inclusive education neglects so many areas. Usually all an inclusive education can really offer is a minimal accomondations approach. Meaning speech, front row seating, FM device and if the district is really generous a notetaker.
You sound like a pro oralist " Oh all she needs is hearing aids and to attend her local school." I hate saying that but you do.....what's wrong with a dhh program where she could learn ASL, and have TODs and have dhh peers?

 

[deafdyke]

OH, one way to argue about getting specialized services is that you could argue that she may have a progressive loss, and you want to prepare her for everything. We have a couple of adults here who had progressive losses....they weren't upset about losing their hearing, but they were upset that they weren't given the TOOLS to cope with the progressive loss (ie ASL etc)

 

[deafdyke]

I think it's VERY audist to assume that all a HOH kid needs is neighborhood school and a hearing aid and speech.

 

[Bottesini]

It's also about the big picture. An inclusive education neglects so many areas. Usually all an inclusive education can really offer is a minimal accomondations approach. Meaning speech, front row seating, FM device and if the district is really generous a notetaker.
You sound like a pro oralist " Oh all she needs is hearing aids and to attend her local school." I hate saying that but you do.....what's wrong with a dhh program where she could learn ASL, and have TODs and have dhh peers?

The local schools would be the location of a dhh program.

This sounds like a very neglectful parent who wants to raise a deaf kid.

But while I am going to overlook your insulting attitude, our discussion of this matter will go no further.

 

[Bebonang]

The most important thing is to have sign language like ASL so that she can follow the instructions in her classrooms. I was in the mainstream school and it was difficult to follow what is being said in the classrooms. You have no idea how difficult it is to go through struggle trying to make head and tail of what the teachers said. So please let her learn sign ASL so that she can have ASL interpreters to follow the instructions. Lipreading especially with the hearing aids still is difficult and hard to make out when there is not much sound to the words. That is why we can not pick up with words. Also she need to be with other deaf children who sign with her. That would be great so that she don't get left out. Hearing children are not much help with that.

Oh, to AllDeaf forum. I hope you can browse around the forum and learn about Deafness, Deaf Culture and hearing aids, even CI (For me, it is not good to have surgery). See you around here.

 

[Courtneydang]

If she has a moderate, conductive loss, why doesn't she have hearing aids?

If you can't afford them, contact Starkey Hear Now, or your local Lion's club.

With that type of loss, aided, there is no reason why she shouldn't be able to function very well in her local school.

She should also be in speech therapy in your local school system. You should take documentation from your doctor, and she should have an IEP.

I honestly have NO idea why the audiologist didnt recommend hearing aids. he was a bit of a condescending prick and im going to find another audiologist next week. he spoke to me like i was an idiot, and made me feel like crap. he wouldnt answer my questions and said i needed to take her to our family doctor.
her speech is generally fine. but she does mispronounce a few things. but nothing im too worried about. especially not if she/we can learn to sign. my thought is, communication is necessary, speech isnt. shes open to learning how to sign, and she uses the few signs she does know.
im just really worried about school. the school for Deaf and HOH is close to two hours away from where i live (longer if you catch city traffic) and im not sure the public school will do anything without specific request from a doctor. im not getting any cooperation from her teacher or counselor. ive sent emails and called sent notes asking for some information asking about the dhh programs.

 

[signcrazy]

Wow, this sounds just awful. I'm hard of hearing and my mother has had to fight for me throughout the years. I hate when people make it so difficult to help others. I do wish you the best.

 

[shel90]

I honestly have NO idea why the audiologist didnt recommend hearing aids. he was a bit of a condescending prick and im going to find another audiologist next week. he spoke to me like i was an idiot, and made me feel like crap. he wouldnt answer my questions and said i needed to take her to our family doctor.
her speech is generally fine. but she does mispronounce a few things. but nothing im too worried about. especially not if she/we can learn to sign. my thought is, communication is necessary, speech isnt. shes open to learning how to sign, and she uses the few signs she does know.
im just really worried about school. the school for Deaf and HOH is close to two hours away from where i live (longer if you catch city traffic) and im not sure the public school will do anything without specific request from a doctor. im not getting any cooperation from her teacher or counselor. ive sent emails and called sent notes asking for some information asking about the dhh programs.

Why am I not surprised? Keep fighting and still contact the deaf school for support even if your child wont attend there. I am sure they can give you information on deaf programs to help meet her needs.

 

[rockin'robin]

I can imagine what this little girl is going through!.....And if I were the Parent...I would have done everything in my power to get some help for her.....Does the Parent have Medicaid?....

Sorry, this story makes me angry and hurt....surely there are doctors out there that could have helped her!...

 

[MCB]

Send a letter to the special education department of your school district demanding a special education evaluation for your daughter. Attach a copy of the audiogram report. If you get the second opinion from another doctor before you take this measure, enclose the two reports.

You can send a copy to the state department of education; special education; DHH programs. Make sure there is a notice to the school district where the "carbon copy" is sent.

They will tumble over their heels getting things lined up.

 

[Courtneydang]

I can imagine what this little girl is going through!.....And if I were the Parent...I would have done everything in my power to get some help for her.....Does the Parent have Medicaid?....

Sorry, this story makes me angry and hurt....surely there are doctors out there that could have helped her!...

as hurt and angry as it makes you, im probably 100 times more upset.
but she is infact on medicaid, and if any of you have ever had experience with it, theres alot of red tape making it very difficult to get anything done. i lost my job last year (where i had her covered on private insurance) and im currently only working part time and cant afford it.
in order to get her to an ENT with medicaid, she has to have 6 ear infections in six months. BUT shes not getting ear infections. the only reason she was able to get into the audiologist was she failed the schools hearing test twice and the schools referral was good enough . i have her report form the audiologist im taking her to the pediatrician on the 17, and if i cant get a referral to an ent i plan on filing appeals with medicaid to get them to make an exception. which can take more than two months.

 

[Courtneydang]

I can imagine what this little girl is going through!.....And if I were the Parent...I would have done everything in my power to get some help for her.....Does the Parent have Medicaid?....

Sorry, this story makes me angry and hurt....surely there are doctors out there that could have helped her!...

Im sure as angry and as hurt it makes you, im about 100times more upset.
yes she is on medicaid. and if youve ever been on/hadkids on medicaid you know how difficult it is to get anything accomplished. she needs to have 6 ear infections in 6 months to get a referral to an ENT, but shes not getting ear infections, she hasnt one maybe two in two years. im hoping i can get the referral to an ENT just based on her audiology reports, but the soonest i can get her to the pediatrician is the end of janurary. Im sure there are better audiologists, that would have done more for her, however i could only choose from three. and i picked the one i could get her into see the quickest, and the one closest too me, which was still over an hour drive.
i plan on filing an appeal with medicaid early next week, to try to bypass the redtape to get to an ent and a different audi.

 

[Anij]

I'd make sure that you're given a copy of any of her audiograms (and learn exactly what they mean).

It sounds like she'd be a great candidate for BAHA (ask to do a BAHA headband trial)

 

[rockin'robin]

Im sure as angry and as hurt it makes you, im about 100times more upset.
yes she is on medicaid. and if youve ever been on/hadkids on medicaid you know how difficult it is to get anything accomplished. she needs to have 6 ear infections in 6 months to get a referral to an ENT, but shes not getting ear infections, she hasnt one maybe two in two years. im hoping i can get the referral to an ENT just based on her audiology reports, but the soonest i can get her to the pediatrician is the end of janurary. Im sure there are better audiologists, that would have done more for her, however i could only choose from three. and i picked the one i could get her into see the quickest, and the one closest too me, which was still over an hour drive.
i plan on filing an appeal with medicaid early next week, to try to bypass the redtape to get to an ent and a different audi.

Does the little girl have a Primary Doctor? ...Surely, that doctor would do the referral. Even the schools give hearing tests to students if they suspect the child is not able to hear well....A school nurse would surely be able to help also...

You've waited a long time now....and seem to have more "patience" than I would ever have......as I would raise holy hell if something like this happened to my child...

I cannot fathom seeing a ittle girl "cupping her ear" to be able to hear!...Like some old person....

 

[Courtneydang]

Does the little girl have a Primary Doctor? ...Surely, that doctor would do the referral. Even the schools give hearing tests to students if they suspect the child is not able to hear well....A school nurse would surely be able to help also...

You've waited a long time now....and seem to have more "patience" than I would ever have......as I would raise holy hell if something like this happened to my child...

I cannot fathom seeing a ittle girl "cupping her ear" to be able to hear!...Like some old person....

she does have a primary pediatrician (and an appointment in two weeks) however she CANT do the referral until shes "chronic recurring" ear infections. which shes not getting. and even if she did do the referral anyway, medicaid will not cover it.
when she was younger, she had private insurance. and a referral wasnt needed, i took her to the ent, and did the best i could with the knowledge and resources i had at the time. the doctor said the damage that was done would not get better. and putting tubes may or may not prevent more damage that probably wouldnt happen. putting the tubes in would have cost me more than 2grand, that i just didnt have. and for the next two years or so i knew she had mild loss and since she wasnt in school, we dealt with it at home. it wasnt bad. its really only been since late september that i noticed a marked decrease in her hearing,(and thats when i sent a note asking if the school would do a hearing test so i can use the referral, and when the teacher gave me a hard time i demanded her class switched, and the school JUST did the hearing test on december 17) and really only the past 4 or 5 weeks that its been drastically worse.
hindsight is 20/20 i should have done the tubes in 2009, and if i could go back i would. but i cant, i can only deal with it now and move forward.