Frustrated With Audiologist!!

Her ST insisted that if she used signs that she wouldn't learn to speak. I insisted that if she learned some signs she'd at least avoid most of the time kids with ds experience extreme frustration and behavior problems caused by having a limited expressive language,
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I think i heard that the thinking is that, kids with ds may not be as mr as some people think.........it's just that they don't have sophisticated spoken language.
 
Jag, you brought up a good point,children sometimes get frustrated when they cannot get their point across.It was soo awesome the day my daughter was 8 months old and signed "no" to me.I was feeding her and when she didnt want anymore she stuck out her little arm, waived it back and forth and shook her head! I was so happy that food wasn't splattered all over me instead! My point that I bring up to all the audiologist I encounter is,When my daughter is not wearing her CI,how will I communiate with her?When she has an ear infection or is in the bath tub? what if she is doing something dangerous in the pool and needs to be told otherwise? How will I communicate with her???? And I always see that pause and they usually tell me they understand. She just switched audiologist.She is seeing a different one now that she is going through her CI evaluations.So, this was the 1st visit, and I was told she had strong opinions on no signing.Well, I also have my strong views but the difference is IM the parent! When i look to the future,I look foward to having that mother-daughter bond.I want her to be able to come to me and know that im with her 100% Are there any parents that had difficulty with being overprotective? I hope people arent like," here comes mama bear!" Hmmm...maybe that wont be so bad...= )
 
lol Ange I am glad to hear you chose a different audi and do hope this one is more willing to slow down and go at the pace YOU are comfortable with.

You sound like a very caring parent that is trying to do a 100% best for her child. Even if you are called a mamma bear, I would say proudly yep that is me, but at least I know that I am doing all I can to give my daughter the best of all tools and life.

I applaud a parent like you that wants not only a chance at a hearing enviroment for her child, but also a chance for your child to stay on a par in language as other children. You also are giving her a choice at being able to sign with the best of us, but chose not to or chose to do so.

Even though you may come across bickering in this forum in many of the CI threads, just remember only a VERY FEW of us do not support CI's. MANY of us are only concerned with a child developing language delays, by parents WITH HOLDING signs from their implanted child's toolbox.

All in all, I would like to close this post by saying sometimes being a *mamma bear* is not such a bad thing. You definitely are looking out for your daughter, and no one could ask for more than that.
 
ange26s said:
Jag, you brought up a good point,children sometimes get frustrated when they cannot get their point across.It was soo awesome the day my daughter was 8 months old and signed "no" to me.I was feeding her and when she didnt want anymore she stuck out her little arm, waived it back and forth and shook her head! I was so happy that food wasn't splattered all over me instead! My point that I bring up to all the audiologist I encounter is,When my daughter is not wearing her CI,how will I communiate with her?When she has an ear infection or is in the bath tub? what if she is doing something dangerous in the pool and needs to be told otherwise? How will I communicate with her???? And I always see that pause and they usually tell me they understand. She just switched audiologist.She is seeing a different one now that she is going through her CI evaluations.So, this was the 1st visit, and I was told she had strong opinions on no signing.Well, I also have my strong views but the difference is IM the parent! When i look to the future,I look foward to having that mother-daughter bond.I want her to be able to come to me and know that im with her 100% Are there any parents that had difficulty with being overprotective? I hope people arent like," here comes mama bear!" Hmmm...maybe that wont be so bad...= )
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Oh, I can guarantee you that you will be called over-protective, over-assertive, and many other things as you advocate for your daughter's needs. But the frustration those professionals and educators feel over your refusal to accept anything but that which will prove to be the best benefit for your daughter is minor compared to the frustration your daughter would feel in not being able to communicate. As I told them, it does not matter to me how my son communicates, but only that he can communicate!

I have traveled the road you are on right now. It is not always the easiest road to travel, but I can tell you that you and your child will both be grateful for your continued battles to give her all the tools she needs.

And you are tight....the "here comes mam bear" is not so bad. In fact, it can work to your advantage. LOL!
 
There needs to be many, many more stories like this....MANY
 
deafdyke said:
I think i heard that the thinking is that, kids with ds may not be as mr as some people think.........it's just that they don't have sophisticated spoken language.
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these kids have MR ranging from very mild to severe/profound. But it is very rare to find a child or person with DS who does not have mental retardation. But being a syndrome not ever person with DS has the same problems, some have few and others deal with many medical problems. The intelligence of a child/adult with ds can be tested fairly accurately with the IQ test for the deaf/hoh. And many parents are insisting on that test being used. While I don't believe in that type of testing and have rarely had it given for IEP purposes there is a 25 point difference in my daughter score between the verbal IQ test and the non verbal. One problem these kids have with IQ tests is they do have fine motor problems that also impact their scores. Hence my opinion that the IQ itself is worthless when writing an IEP.
 
just remember only a VERY FEW of us do not support CI's.
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Yes, and just remember that a lot of the anti ci types tend to be misinformed about what a ci is. I really think within a few years attitudes towards cis are going to become a lot more moderate.
Just hang in there.................It's getting a lot more accepting.
BTW, are you a member of the American Society for Deaf Children? It's an excellent organization for parents of dhh kids.

these kids have MR ranging from very mild to severe/profound. But it is very rare to find a child or person with DS who does not have mental retardation.
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Ummm not quite. I know MR is very common in the Down's population, BUT the thing that I was saying is that sometimes maybe the IQ tests can't quite measure the IQ of a Down's kid, b/c of spoken language issues. Actually, it's possible that there are tons of people out there with Down's, but they aren't being recorded b/c they are too "high functioning." Scienctists are very conservative.....they usually only record the worst cases, and dismiss the higher functioning cases. Believe me, I know........
But being a syndrome not ever person with DS has the same problems, some have few and others deal with many medical problems.
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That's the same with my syndrome (which is sort of like Down's)
 
This makes me wonder if the CI candidate, when they are checking out the possibility of implantation, should make certain the audiologist in the area is top-notch? Seems to me the Surgeon, the surgery is nothing compared to what lies ahead with an audie....I think the audie is KEY and I have heard altogether way, way too many stories about bad ones, bad in the sense they don't know all that much about what they are doing to bring along the CI recipient. Makes me wonder about the success rate of the CI as it relates to what the audie has/has not done.
Why, my own audiologist admitted she knows very little about the CI and doesn't take them on.....thank God for small favors, eh?
 
ange26s - I think you have an amazing attitude here and have been the best advocate for your daughter! :applause: I cannot add much to what has already been said. Total communication is, I believe - the best way to start her off in life. She will naturally gravitate towards what is easiest for her and acheives the best results. And she will have options to choose from. Wish there were more parents willing to go to bat for their children as you have.

I was diagnosed with a hearing loss at age 3 and the Dr told my parents that I should "learn to use" what I had. So I did - and that got me - practically no friends and not much of an education either. The only 'good' thing is that I became a visual artist and a relatively successful one - and I am just fine being on my own and can occupy myself very productively. Not so good with people skills though - as i am finding out...but that is the communication disability...and the internet and sites like this changed all that for me! :cool:
 
deafdyke said:
Ummm not quite. I know MR is very common in the Down's population, BUT the thing that I was saying is that sometimes maybe the IQ tests can't quite measure the IQ of a Down's kid, b/c of spoken language issues. Actually, it's possible that there are tons of people out there with Down's, but they aren't being recorded b/c they are too "high functioning." Scienctists are very conservative.....they usually only record the worst cases, and dismiss the higher functioning cases. Believe me, I know........ That's the same with my syndrome (which is sort of like Down's)
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As I said IQ tests aren't a good way to help people with DS. (or any other type of LD) While you 'might' find individuals with mosiac DS who can funtion as normal even those are very rare. Mosiac does not effect all the cells in the body and could effect physical features but not the brain, but mosiac is only hmmm been a long time but I believe 1 or 2 % (maybe 5) of the DS population.

I don't need a number to tell me my child does not function normally. I know of 'high' functioning people with DS who still need help to some extent. So really I doubt there are very many people out there with tri-21 who do not have MR. My point of stating what I did is to get parents to us alternative methods of testing when planning IEP's. IQ tests are worthless IMO. (yeah I know some people really think they are great. LOL)
 
jag said:
As I said IQ tests aren't a good way to help people with DS. (or any other type of LD) While you 'might' find individuals with mosiac DS who can funtion as normal even those are very rare. Mosiac does not effect all the cells in the body and could effect physical features but not the brain, but mosiac is only hmmm been a long time but I believe 1 or 2 % (maybe 5) of the DS population.

I don't need a number to tell me my child does not function normally. I know of 'high' functioning people with DS who still need help to some extent. So really I doubt there are very many people out there with tri-21 who do not have MR. My point of stating what I did is to get parents to us alternative methods of testing when planning IEP's. IQ tests are worthless IMO. (yeah I know some people really think they are great. LOL)
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I'm going to have to agree with you on this one, jag. Alternative testing methods are needed for any student with MR or an LD.
 
jag said:
As I said IQ tests aren't a good way to help people with DS. (or any other type of LD) While you 'might' find individuals with mosiac DS who can funtion as normal even those are very rare. Mosiac does not effect all the cells in the body and could effect physical features but not the brain, but mosiac is only hmmm been a long time but I believe 1 or 2 % (maybe 5) of the DS population.

I don't need a number to tell me my child does not function normally. I know of 'high' functioning people with DS who still need help to some extent. So really I doubt there are very many people out there with tri-21 who do not have MR. My point of stating what I did is to get parents to us alternative methods of testing when planning IEP's. IQ tests are worthless IMO. (yeah I know some people really think they are great. LOL)
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I agree. As a special education teacher, I will tell you for some students the testing is just to allow for eligibility. I'm more interested in finding strategies for teaching, comprehension, and strenghts instead of IQ or even achievement testing.

I have student with high function austism. Another state gave a verbal IQ test, he scored low. Our school psychologist gave a non-verbal IQ and he scored differently. We used other data as achievement and benchmark testing to see which testing was valid.

Jag, What part of the IEP do you view as the most important in planning your child's education?
 
vallee said:
I agree. As a special education teacher, I will tell you for some students the testing is just to allow for eligibility. I'm more interested in finding strategies for teaching, comprehension, and strenghts instead of IQ or even achievement testing.

I have student with high function austism. Another state gave a verbal IQ test, he scored low. Our school psychologist gave a non-verbal IQ and he scored differently. We used other data as achievement and benchmark testing to see which testing was valid.

Jag, What part of the IEP do you view as the most important in planning your child's education?
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I will tell you that when they insisted on an IQ test when my daughter was 6 and I asked them to show me WHERE in the regulations it says the only way to qualify is an IQ test they backed down. Alternative tests can be used even with LD's. A high functioning child can be tested by alternative means to. And parents should research and push for testing that is relivant to the child.

The IEP as a whole is all important. The information to set goals and objectives is based on PLOP and the testing data that is available, ongoing assessments etc. We try to work on her weaknesses while pushing on with her strengths. Good testing data can help any child with any disorder/disablity, IQ's are not good testing data since they ususally are conducted in a couple hrs on one day and if the child is having a bad day the data is way off. But unfortunately parents don't learn enough about the process, though the internet is helping with that. :)

I have to say that the current team is really very good and we do wish we had moved her from her home district into her current setting sooner, so I would say to parents who aren't happy with where the child is to go and research the options and come up with a better solution. Parents do know their child best. Will the screw up at times, sure but that's life. One thing my internet buddies always stressed was an IEP meeting can be called at any time. I do know many schools (including my child's former one) try to say that no they only have to have an anunal meeting but we worked that out with our school....paper trails can work wonders. (that's a hint for those of you parents just beginning...you should always keep notes even notes from phone calls regarding IEP issues, send letters with copies to yourself and etc...it will help you if you need to go to due process, do not rely on the school staff they have a boss to answer to no matter how nice and supportive they may be)
 
jag said:
I will tell you that when they insisted on an IQ test when my daughter was 6 and I asked them to show me WHERE in the regulations it says the only way to qualify is an IQ test they backed down. Alternative tests can be used even with LD's. A high functioning child can be tested by alternative means to. And parents should research and push for testing that is relivant to the child.

The IEP as a whole is all important. The information to set goals and objectives is based on PLOP and the testing data that is available, ongoing assessments etc. We try to work on her weaknesses while pushing on with her strengths. Good testing data can help any child with any disorder/disablity, IQ's are not good testing data since they ususally are conducted in a couple hrs on one day and if the child is having a bad day the data is way off. But unfortunately parents don't learn enough about the process, though the internet is helping with that. :)

I have to say that the current team is really very good and we do wish we had moved her from her home district into her current setting sooner, so I would say to parents who aren't happy with where the child is to go and research the options and come up with a better solution. Parents do know their child best. Will the screw up at times, sure but that's life. One thing my internet buddies always stressed was an IEP meeting can be called at any time. I do know many schools (including my child's former one) try to say that no they only have to have an anunal meeting but we worked that out with our school....paper trails can work wonders. (that's a hint for those of you parents just beginning...you should always keep notes even notes from phone calls regarding IEP issues, send letters with copies to yourself and etc...it will help you if you need to go to due process, do not rely on the school staff they have a boss to answer to no matter how nice and supportive they may be)
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nodding, I agree 100%.


I do tell my parents the bold comment. I might not be the favorite of the LEA and psy, but I do believe in developing an IEP that benefits the child not the teacher. Another thing that parents do not realize is that just because the IEP is "typed out" it is still a working document. I encourage my parents to make changes and suggestions to it. Also read and reread the rights to IDEA that is sent home with any invitation to any meeting. And just like you keep all paperwork.
 
jag said:
I will tell you that when they insisted on an IQ test when my daughter was 6 and I asked them to show me WHERE in the regulations it says the only way to qualify is an IQ test they backed down. Alternative tests can be used even with LD's. A high functioning child can be tested by alternative means to. And parents should research and push for testing that is relivant to the child.

The IEP as a whole is all important. The information to set goals and objectives is based on PLOP and the testing data that is available, ongoing assessments etc. We try to work on her weaknesses while pushing on with her strengths. Good testing data can help any child with any disorder/disablity, IQ's are not good testing data since they ususally are conducted in a couple hrs on one day and if the child is having a bad day the data is way off. But unfortunately parents don't learn enough about the process, though the internet is helping with that. :)

I have to say that the current team is really very good and we do wish we had moved her from her home district into her current setting sooner, so I would say to parents who aren't happy with where the child is to go and research the options and come up with a better solution. Parents do know their child best. Will the screw up at times, sure but that's life. One thing my internet buddies always stressed was an IEP meeting can be called at any time. I do know many schools (including my child's former one) try to say that no they only have to have an anunal meeting but we worked that out with our school....paper trails can work wonders. (that's a hint for those of you parents just beginning...you should always keep notes even notes from phone calls regarding IEP issues, send letters with copies to yourself and etc...it will help you if you need to go to due process, do not rely on the school staff they have a boss to answer to no matter how nice and supportive they may be)
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Excellent advise to parents regarding IEP procedures, as well as testing alternatives. The only thing I would add is to keep the documentation until your child has graduated from high school, as IEP information from previous years can be used to set precedent.
 
vallee said:
nodding, I agree 100%.


I do tell my parents the bold comment. I might not be the favorite of the LEA and psy, but I do believe in developing an IEP that benefits the child not the teacher. Another thing that parents do not realize is that just because the IEP is "typed out" it is still a working document. I encourage my parents to make changes and suggestions to it. Also read and reread the rights to IDEA that is sent home with any invitation to any meeting. And just like you keep all paperwork.
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And, if you do not agree with the IEP as written, do not, under any circumstances, sign it. If the team refuses to rewrite to include those services you feel is necessary for your child's education, or if they refuse to amend services as proscribed in the IEP, simply inform them that you will be going to due process. It is also helpful to determine, beforehand, if your shcool system, in fact, if your state, is in compliance with the legislation set forth throughthe ADA and IDEA. Many states are out of compliance, and those that are out of compliance are on shaky ground in any lawsuit or due process hearing.
 
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