our story.

One thing I'd do.... Maybe see if your daughter can trial at the school....
Are there any other dhh kids in your daughter's school? Maybe talk to their parents about what the school experience is like? That might give you a good idea about the low incidence disability experience in your district. The mainstream/neighborhood school doesn't always have the best services etc
Also, maybe a good idea might be to have that school evaluate her, and make reccomendations, as to services......She might not need speech therapy. It just irritates the crap out of me that everyone assumes that dhh kids, including postlingal kids need speech. I've not met Courtney's kid, but she ALSO doesn't express extreme concern with her kid's speech.
 
deafdyke said:
One thing I'd do.... Maybe see if your daughter can trial at the school....
Are there any other dhh kids in your daughter's school? Maybe talk to their parents about what the school experience is like? That might give you a good idea about the low incidence disability experience in your district. The mainstream/neighborhood school doesn't always have the best services etc
Also, maybe a good idea might be to have that school evaluate her, and make reccomendations, as to services......She might not need speech therapy. It just irritates the crap out of me that everyone assumes that dhh kids, including postlingal kids need speech. I've not met Courtney's kid, but she ALSO doesn't express extreme concern with her kid's speech.
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i called medicaid today to see what i needed to do about getting a second opinion. to get her hearing aids. they are sending me paperwork, hopefully that will be done by the end of the month.
the schools arent back in session till the 8th. im going to send her audiograms via email to the nurse and the counselor, as well as the special needs coordinator for the district as to keep record that i have provided them a copy, and see what they say. if i dont get an answer im happy with, ill go above their heads and straight to the school board.
im not concerned with getting her a speech therapy at least not yet. her speech is fine right now. im not sure if IF her hearing continues to deteriorate if her speech will follow suit, but its not an issue right now. her language and vocabulary is leaps beyond her age.
im really hoping we can get some help from the doctors. im worried about her getting hurt, she always helps me with dinner and nearly burned her self because she didnt hear my say the lid was hot.(because she wasnt looking at me i had to yank her away. im worried about her crossing the street to catch the bus in the mornings. i cant keep her in a bubble. it seems like every day that goes by its gets worse.
 
deafdyke said:
One thing I'd do.... Maybe see if your daughter can trial at the school....
Are there any other dhh kids in your daughter's school? Maybe talk to their parents about what the school experience is like? That might give you a good idea about the low incidence disability experience in your district. The mainstream/neighborhood school doesn't always have the best services etc
Also, maybe a good idea might be to have that school evaluate her, and make reccomendations, as to services......She might not need speech therapy. It just irritates the crap out of me that everyone assumes that dhh kids, including postlingal kids need speech. I've not met Courtney's kid, but she ALSO doesn't express extreme concern with her kid's speech.
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and i want to say thank you. for all your help. i am so lost and since i cant seem to get help from doctors.
 
called medicaid today to see what i needed to do about getting a second opinion. to get her hearing aids. they are sending me paperwork, hopefully that will be done by the end of the month.
the schools arent back in session till the 8th. im going to send her audiograms via email to the nurse and the counselor, as well as the special needs coordinator for the district as to keep record that i have provided them a copy, and see what they say. if i dont get an answer im happy with, ill go above their heads and straight to the school board.
im not concerned with getting her a speech therapy at least not yet. her speech is fine right now. im not sure if IF her hearing continues to deteriorate if her speech will follow suit, but its not an issue right now. her language and vocabulary is leaps beyond her age
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Yes, hearing aids might help. I wonder if you could request a trial.....Some HOH kids don't benefit from aids. It's still worth it to try them since she might really like them.
and yes ....GO MAMA.
She may never need speech. That would be AWESOME if she didn't!!! The articulation and mechanics of speech therapy is pretty freaking BORING. If the issues are severe that's one thing, but very often parents seem to think that speech therapy can produce "like hearing" speech. Even HOH and postlingal kids still have articulation and mechanical issues (pitch, volumne etc) ....Language and vocab are the most important things to worry about. ...and with the addition of ASL she'll be able to do anything!
 
maybe you can help me here, lately >past two or three days< k has been 'hearing' me say her name when i havent, said anything. she complains that "a bumble bee is buzzing in her ear" what could this be?
 
Might be what a lot of us have, tinnitus!!! It is awful. There is a thread about tinnitus on this site. Take a look it might help.
 
do you have facillitators at local hospitals,if so insist on one when you see dr.s all those involved with your daughter will have it explained to you and to her on level she and you understand.
facillitators is something the n.h.s adopted from the states,i am about to use one when i see dr with my daughter soon
 
BTW, I think you're doing the right thing right now........coming here and talking about what to do regarding things like academic placement.
It's good you came. We are the experts....She may only need a neighborhood school setting with a bit of accomondations, (and maybe going to deaf camp during the summer) but then again she might really benefit from a dhh program. It is hard to tell, seeing especially as she is postlingal. Then again, I know some dhh as TEENS who have expressed desire to attend a deaf school/dhh program! I do think that the overwhelming majority of dhh kids would really benefit from attending a deaf program or a deaf school. It's definitely something to look into!
 
deafdyke said:
BTW, I think you're doing the right thing right now........coming here and talking about what to do regarding things like academic placement.
It's good you came. We are the experts....She may only need a neighborhood school setting with a bit of accomondations, (and maybe going to deaf camp during the summer) but then again she might really benefit from a dhh program. It is hard to tell, seeing especially as she is postlingal. Then again, I know some dhh as TEENS who have expressed desire to attend a deaf school/dhh program! I do think that the overwhelming majority of dhh kids would really benefit from attending a deaf program or a deaf school. It's definitely something to look into!
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deafdyke
I have added bold to part of your post quoted above. Based on what I have seen of your posts you do regard yourself as an expert. But, what qualifies you as an expert? Your profile only mentions being a college student as occupation.
 
Jane, that's easy. Although I am not a Ph.D in this area (and my profile is outdated) We have actually LIVED and experienced the downsides of inclusion. We are not Grizelda Fothergils thinking that just b/c a kid is placed in the same classroom, as hearing/nondisabled (this goes for kids with other disabilities too) they'll get the same education. Heck, I have friends who teach who tell me that they're seeing the exact same thing with their students, that they saw with me....We LIVED the theory...and the theory isn't very good.
The assumption that inclusion/mainstreaming is somewhat better is based on a very old assumption. One of the problems is that back before mainstreaming was common, kids who were mainstreamed didn't get the attitude " oh gawd....one of those kids." For decades, we've been lumped in with the kids who are in sped b/c it's a dumping ground, and thus haven't responded well to that sort of placement. B/c we were in inapproreate placements, we didn't do as well as we could have. You do know that even mainstream special ed teachers get very minimal traning on how to teach dhh and other low incidence students right?
You also know that it's common as hell for mainstream school admins to act like you're requesting that a mentally disabled student be put in an AP class, if you request accomondations beyond the basics right?
 
and might I add, the mainstream experience has changed drasticly since you were in school. If I recall correctly you're a unilateral late deafened person right? If you were in school today, yes you'd thrive with minimal accomondatons.....unilateral kids can and do thrive with a minimal accomodnations approach. They generally don't need a lot of accomondatons (there are exceptions thou)
But my point being is that it's overall a very good idea for parents of dhh kids to investigate deaf school or dhh program placement.
I have friends, with children who are in the "crack" between mental disability and learning disability. They are so frustrated with the mainstream sped system, that they have told me if their kid was dhh they would automaticly send them to a deaf school. I think that says a LOT!
 
I dont understand courtneydang. Will you expain to me what does her % hearing loss mean? I never had my hearing loss described in %. Only in decibel. What is your daughters hearing loss in decibel? Also, i live in austin, texas. I also am on humana medicaid/care. I never had to have six ear infections in six months to go to an ENT. Look at your Maunal. If the ENT accepts your Humana medicare/caid then you make the appt and you take your daughter. The other thing. Please help me understandwhy your little girls teacher has not written up an IEP (individual education plan) for your daughter if you already told her she had a hearing loss and had documentation proof from a lic audi. The teacher could had an IEP plan written up that requested your daughter to be referred to an ENT for farther examination. Also, if your daughters audi could have referred her over. Im sorry, i just dont understand this whole thing. Perhaps im in left field , but with my experience this story just doesnt seem right. Are you WANTING a deaf daughter? It seems everyone is fast to slap hearing aids on her and send her off to a deaf school. But I'm no so sure its your lil girl as much as it is the mom. This story has too many flaws.
 
deafgam said:
I dont understand courtneydang. Will you expain to me what does her % hearing loss mean? I never had my hearing loss described in %. Only in decibel. What is your daughters hearing loss in decibel? Also, i live in austin, texas. I also am on humana medicaid/care. I never had to have six ear infections in six months to go to an ENT. Look at your Maunal. If the ENT accepts your Humana medicare/caid then you make the appt and you take your daughter. The other thing. Please help me understandwhy your little girls teacher has not written up an IEP (individual education plan) for your daughter if you already told her she had a hearing loss and had documentation proof from a lic audi. The teacher could had an IEP plan written up that requested your daughter to be referred to an ENT for farther examination. Also, if your daughters audi could have referred her over. Im sorry, i just dont understand this whole thing. Perhaps im in left field , but with my experience this story just doesnt seem right. Are you WANTING a deaf daughter? It seems everyone is fast to slap hearing aids on her and send her off to a deaf school. But I'm no so sure its your lil girl as much as it is the mom. This story has too many flaws.
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it was the ENT who said those percentages a few years ago. im really not even sure how he came up with them because she wouldnt do the hearing test, he put these things in her ear and had a little hand held thing that beeped. i dont know what they meant either, he was very confident it wouldnt get worse. i wish i had asked more questions, because i feel like a jackass now.
the audi we went to last week gave me charts that i dont know how to read, but from what i can make out, her right ear is at 40db and the left is 50db.
when she started kindergarten i gave the school her paper from the ent (that was two years old at that point) and had had contact with her teacher on a regular basis. she was progressing at/above speed.
at the beginning of this year (first grade) she was fine. it wasnt untill late september that i started noticing her sitting close to the tv, took her to the eye doctor thinking she couldnt see, then noticed her saying "huh i cant hear you" all the time. so i took her to the pediatrician several times who said her ears looked fine. and there was no need to get a referral to the ent or audi. (never doing a tone test) in october i started asking her teacher if she noticed k having trouble, she said no. so i asked the school nurse to do a hearing test because, that i got back on december 17. and i made an appoinment with the audi for the next week.
ive changed her pediatrician twice. and ive been told she cant see the ENT with out a referral from a primary care doctor. (shes on amerigroup with medicaid). and her old pediatrician said she cant/wont do the referral until she has "chronic recurring ear infections" so im taking her to a different doctor next thursday and bringing her audio report and seeing what they say. i asked the audi if he could do the referral, he said it has to be the pediatrician.
im not sure what kind of people you have contact with that WANT to raise a deaf child, but im not one of them.
im not sure what is "flawed" other than i didnt feel the need to post every detail of her life. bottom line is, my daughter cant hear, and i dont know what to do.


"In most cases, you need to have a referral from your child’s doctor to see another doctor."
^^from her medicaid handbook.
 
Personally, i think you answered your own questions. You dont know how to ask questions! If the audi handed you your lil girls hearing test and you cant read and understand it how and why on earth would you turn around and walk out of her office. You should had said thank you for the test. Now lets go over it so i can understand what is going on with my lil girl because i dont understand this audiogram. If the ENT is using terminology you never heard of or not sure about, stop him and ask him to explain. Dont sit there and let them talk over you like that. You did nothing but acted like you knew what he/she was saying and misled them. You hurt your own child by doing that. Raise your hand...flag them down...say-whoa please explain what is going own so as the mom i can get a better picture of whats going on. If you didnt understand anything with audiograms, terminology etc....dont leave till you do!!! Insist your daughters primary doctor finds her another ENT and have her checked out. Sometimes you can find a place to do free hearing checks at the health clinic in austin. Ask your primary dr about it. Contact deaf services and ask about free hearing test for children. They can direct you, too. But you need start asking questions when you dont understand something. Thats hour own fault. And now your child is paying the price. Good luck.
 
deafgam said:
Personally, i think you answered your own questions. You dont know how to ask questions! If the audi handed you your lil girls hearing test and you cant read and understand it how and why on earth would you turn around and walk out of her office. You should had said thank you for the test. Now lets go over it so i can understand what is going on with my lil girl because i dont understand this audiogram. If the ENT is using terminology you never heard of or not sure about, stop him and ask him to explain. Dont sit there and let them talk over you like that. You did nothing but acted like you knew what he/she was saying and misled them. You hurt your own child by doing that. Raise your hand...flag them down...say-whoa please explain what is going own so as the mom i can get a better picture of whats going on. If you didnt understand anything with audiograms, terminology etc....dont leave till you do!!! Insist your daughters primary doctor finds her another ENT and have her checked out. Sometimes you can find a place to do free hearing checks at the health clinic in austin. Ask your primary dr about it. Contact deaf services and ask about free hearing test for children. They can direct you, too. But you need start asking questions when you dont understand something. Thats hour own fault. And now your child is paying the price. Good luck.
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did you read further up in the conversation where i said the audi was a condescending prick, and wouldnt answer my questions? he acted like it was a huge wast of time for me to be in there, and before i even got to my car i was on the phone with another doctor to get her seen. when i asked him what do i do now, he said "take her to a pediatrician" walked out, sat at the desk and started eating. i understand enough to know that i need to peruse other options until i get answers. she has a doctor appointment with my sons pediatrician the 17th, and ive already requested paperwork from medicaid to get as second opinion, and to bypass the referral process and just see an ENT, and filed a formal complaint against the guy we already saw.
I understood fine when the ENT said "she has MILD hearing loss, but it wont get worse"
are you a doctor? how do you KNOW my "choices" negatively effected her? what CHOICE could i have made different with the knowledge i had at the time? please tell me again how i should have gone against what the doctor said to do a seemingly unnecessary surgery and exposed her to general anesthesia (which we have a family history of having bad reactions too, im allergic, and so is my grandmother) and she already had a genetic growth restriction, theres no telling how she would have reacted to being sedated. do you KNOW for sure that would have prevented her from losing more hearing, do you KNOW that the "simple procedure" wouldnt have done more harm than good?
no you dont, no one does.
but thank you, ill find the deaf services in our area, and see what they can do.
 
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Courtneydang said:
did you read further up in the conversation where i said the audi was a condescending prick, and wouldnt answer my questions? he acted like it was a huge wast of time for me to be in there, and before i even got to my car i was on the phone with another doctor to get her seen. when i asked him what do i do now, he said "take her to a pediatrician" walked out, sat at the desk and started eating. i understand enough to know that i need to peruse other options until i get answers. she has a doctor appointment with my sons pediatrician the 17th, and ive already requested paperwork from medicaid to get as second opinion, and to bypass the referral process and just see an ENT, and filed a formal complaint against the guy we already saw.
I understood fine when the ENT said "she has MILD hearing loss, but it wont get worse"
are you a doctor? how do you KNOW my "choices" negatively effected her? what CHOICE could i have made different with the knowledge i had at the time? please tell me again how i should have gone against what the doctor said to do a seemingly unnecessary surgery and exposed her to general anesthesia (which we have a family history of having bad reactions too, im allergic, and so is my grandmother) and she already had a genetic growth restriction, theres no telling how she would have reacted to being sedated. do you KNOW for sure that would have prevented her from losing more hearing, do you KNOW that the "simple procedure" wouldnt have done more harm than good?
no you dont, no one does.
but thank you, ill find the deaf services in our area, and see what they can do.
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Read deafgam's "about me" and you would have seen a possible source of help.

You do seem to get hostile if anybody tells you anything except what you want to hear.
 
It is wonderful that you are a parent that takes the time to see that your daughter is saife. If you could get one of her little friends to help her that would also help. But the school should take care of all of this and not give her a label.. Given the right direction I am sure she will do great..and thanks for doing a great Job with your daughter..Linda
 
Bottesini said:
Read deafgam's "about me" and you would have seen a possible source of help.

You do seem to get hostile if anybody tells you anything except what you want to hear.
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no, i get hostile when negative judgement is passes on me, by people who dont know the entire story.
when you call someone a liar, and say they are an unfit neglectful parent, you can expect them to get hostile.
you do not know my story, you dont know what ive been threw with my daughter. you know a few of sentences i CHOSE to share. why dont you take a couple extra seconds to try to see things past the tip of your nose, and try to understand. the only thing you have said was i was a bad parent for not getting tubes, when you have no idea the situation i was in, financially or otherwise, or if the tubes would have even worked.
 
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