Advice please: son doesn't want to wear HAs

[Speedy Hawk]

When I was at school I hated FM. They so annoying with box clip on my belt and wires to my hearing aids. I did have wireless FM at college but never used it cos I don't wear hearing aids.

I used to switch FM off and never hook wires to hearing aids, they tucked in belt pretending I did hook it up. Most of time teachers doesn't know.

Also I hated wearing hearing aids so I used to switch them off and keep it in my ears for show so that my parents and teachers assuming I am wearing them. Sometimes I get sharp jolt to my brain with very loud sound (kids are noisy and clumsy) or very sudden noise when I am not expecting it. I used to get dizzy even sound and hearing aids set is so low that I cannot hear it, I still get dizzy. I don't know why that is. Something do with vibration of hearing aids sending sounds to my ears making me dizzy, doesn't matter if I can or can't hear it.

Now haven't wore hearing aids for years and my brain feels much more relaxed and fresh.

 

[Jazzberry]

Some hearing aids don't have volume control???? That is news to me.

Yes. I recall that in the mid, late 1990s that hearing aid manufacturers were saying that digital hearing aids did not require volume control and in fact would not perform well with them. (The program wouldn't work, or something like that.)

At the time I was very doubtful, but I gave my audiologist the benefit of the doubt. Mostly because my aided hearing had improved so much with the last pair of hearing aids which had also used a lot of new technology and algorithms at the time.

However, no VC was a big mistake for me. I didn't have enough money at the time to correct the mistake and unfortunately it took a real toll on my ability to get along well with some of my co-workers and managers.

Apparently many HA users, esp. those who had severe or profound losses, complained very loudly so the manufacturers brought the VC feature back.

It makes sense that we would need VC. People with hearing that is statistically normal have a two-way nervous system between the ear and the brain. I've been told that its been proven that people with statistically normal hearing can choose to tune out or tune in to various sounds at will.

To the degree that the ear is damaged, people with hearing loss cannot do that. And there is no two-way tuning system hot wired between the brain and the hearing aid.

So, I think it is better to have volume control. I suspect the main reason there is no VC in some HAs is because of cost considerations. It must make the algorithm simpler to leave VC out of the equation.

As it is, VC on digital HAs is different than VC on the analog HAs of the past. I remember that with my analog HAs I could have full control over the volume with the VC wheel. I could go from no sound to full sound with the VC wheel.

With digital HAs I can adjust it at pre-set intervals and those intervals only make it a little to moderately quieter or a little to moderately louder. Still it is much better than no VC. In the future I will ask the audiologist if those pre-set intervals can be adjusted to cover a wider range of volume.

 

[sallylou]

The family has to accommodate the deaf child. The deaf child should not be accommodating the family. It's most important that the child's needs are met. Please don't shoot the messenger. I'm not criticizing you. I just want to emphasis how important this child's educational placement is. It sounds like your working hard to find options. Good luck!

 

[Speedy Hawk]

Analogue hearing aids defo got MUCH better VC and more control to the user than digital aids. When I tried out my digital aids when I was in my mid teens it was useless! It made no difference, I cannot tell if it was quieter or louder. I wanted FULL control of VC like Analogue. Course that isn't possible with digitals for some reason. That wasn't only problem, too many problems comes with digital aids for me.

 

[deafdyke]

That's horrible.

He only has one teacher. She is very interested in using the FM system. The kids in class are very interested in seeing the FM system being used. He is excited about the idea and liked showing it around, but the reality of actually using it is something else right now.

One of teacher's concerns is that if she lowers voice/whispers, DS might not know that she is talking if he doesn't have the boots on or isn't looking at her.

Last night was Curriculum Night at school, got to meet the Reading Specialist, Music Teacher, and PE teacher. #1 thing when talking with them was something would come up about DS, I'd say that he's d/hh, and they would remark, "Oh, I noticed (those things) in his ears."

So, now the reading specialist knows that he must be tested by a familiar person (in the IEP), the music teacher knows that he voice might be pitched where it is because he is d/hh, and the PE teacher knows we can put EarGear on if there's a problem with his HAs staying on when he's active and that she can use the FM system, too, if need be.

(This is rhetorical, but: Do people really not know what hearing aids are for or what they look like? Or that kids can be d/hh?)

For people who have used FM, would it have been useful for things like PE when maybe playing a sport, the teacher is farther away to hear instructions/read lips?

Yes, yes, I know ASL is the way to go! But, in the interim...

Thank you everyone for sharing on this thread! Very useful to me!

EEEEEKkkk.....that's a RED FLAG. Have they ever taught a dhh kid before? Oh boy.....that's another flaw in mainstreaming. It assumes that the teachers are familiar with how to teach kids with classic disabilties. Unfortuantly most teachers (including sped teachers) get minimal training. I would definitly look into a Deaf School/program placement ASAP. It might not seem bad now, but trust me, it will get worse!

 

[Jazzberry]

Rivenoak, when I googled for your son’s hearing aids technical specifications, I found two links:

Oticon Tego Hearing Aids - Hearing Instruments at Discount Prices - HearingPlanet
http://www.oticon.ca/professionals/.../~asset/cache.ashx?id=1930&type=14&format=web

BTW, most children are prescribed BTE hearing aids. When reading the above two links I made the assumption that you son was, like most children, prescribed BTE aids.

Per the first link, Oticon Tego has 4 programming channels and per the 2nd link Oticon TEgo has the 4 programming channels grouped into 3 channels and they are:

Tego are gathered in
3 channels: LF, MF and HF channels for
low (0-500 Hz),
medium (500-1600 Hz)
and high (1600-5900 Hz) frequencies

I did not see what the actual 4 channels are, but I was reading fast and I may have missed it.

My understanding is that each channel can have the volume gain and compression set separately.

Per your son’s audiogram, he appears to have an unusual graph for his right ear. The most common type of hearing loss is a sloping loss. Most people with hearing loss hear better in the lower pitches and the hearing loss increases as the pitch rises. However, your son’s hearing loss in his right ear does not do this. As per his audiogram, his hearing improves again as the frequency rises and only then becomes the typical sloping loss. The shape of his audiogram appears to be almost a “reverse cookie bite” hearing loss. Because of the:

* unusual shape of his audiogram
* it slopes off more steeply at the last two higher frequency points measured
* and because he doesn’t feel comfortable wearing his right hearing aid

I would ask the audiologist to also measure his hearing at the frequencies at the dotted mark lines -- that would be 3 more measurements. I’d say more, but I can’t read the numbers on the audiogram. Its not coming up clearly enough on my monitor. But it does look like she opted to measure his loss starting at 500 Hz and stop measuring his loss at 4000 Hz. If so, I would ask her to measure his loss at 250 Hz and 6000 Hz also. And again, because his loss has an usual shape, it slopes steeply, and because of the discomfort he has expressed I would also ask her to measure it at 5000 Hz. That would be an additional 3 measurements for a total of 6 more measurements.

Ask her if she programmed his hearing aids using the HA manufacturer’s 3 channel or 4 channel grouping.

And I would ask her to test his recruitment (MCL and especially the UCL test) using the pure tone test at each of the frequencies where his hearing loss was measured. MCL and UCL is usually tested with speech not pure tones -- but that is probably not the best approach. (More on this at the end.)

Putting it all together, it is possible that the audiologist may not have enough flexibility in the hearing aid manufacturer’s program to set the hearing aid to be comfortable for your son in his right ear. If that is the case than a necc. compromise may be to give him less gain. He may end up not getting all the gain he needs, but than again he won’t be getting pain from the hearing aid because he is getting too much volume where he hears better. For his next pair of hearing aids, perhaps he can get one for his right ear that will allow for program settings that will fit his actual hearing loss.


I would ask her about this. Try to see if she can show you how the programmed gain complements his audiogram.

Please keep in mind that this is just a guess based on very limited information. It may be something else entirely.

( BTW, 4 channels are not that many channels. My current HAs has 4 channels. I’ve had a lot of trouble financially over the past 10 years and my current pair of HAs are not as good in quiet situations as the pair of hearing aids I had purchased in 2002. It has fewer channels and more distortion and I can tell that I’m not hearing as well in quiet in 2011 as I did in 2002, and it’s not because of additional hearing loss. It’s because of the technology that I have available to me. On the other hand, my current pair of hearing aids does handle noise better.)

Anyway, moving on to VC and telecoils. The second link said that VC and telecoil were optional for BTE HAs. If you don’t have them on his current HAs, I would ask to have them added in. I think they can do that at the factory. I would also ask the audiologist if it would be possible to get the telecoil, but without the auto feature. My concern is that if he happens to go into a strong electro magnetic field it would turn on when he doesn’t want them to. That might be uncomfortable for him because he may hear buzzing sounds. Also, telecoil programs are sometimes set with different gains than other programs and that may affect his comfort also.

I live in NYC, and I’m constantly walking into strong electromagnetic fields. I’ve been told that even some refrigerators and overhead fluorescent lights(the kind found in offices and schools) can create a strong electromagetic field!. So ... I think that I would want the option to at least be able to override the auto feature.

Anybody else have an opinion on this? I admit that I have never tried that feature. I still have nightmares over that time I got sold a pair of hearing aids without VC.

FWIW, I’m inclined to trust your son. If he says that his HA is uncomfortable, I believe him! He’s 6 years old -- most 6 year olds just want to be play with the other kids in their class, right? If the HAs were helping him do that without discomfort, I’ve no doubt he would wear them without protest.

I have to say this brings back memories of my grade school days when I was expected to wear a hearing aid whose setting hurt my ears. Not fun.


I have more suggestions but I don’t want to run afoul of the M.A.

Feel free to “circle” me at Google+ My account is set up under Jazz Berry. Or PM me your e-mail address and I’ll email you what I will be posting at my Google+ account later tonight.

 

[Jazzberry]

For people who have volume control, at what age do you think you would have been able to manage it? I have no idea if little fingers would have a hard time "dialing in".

I got my first pair of HAs when I was 5 years old. I was able to turn the switch on and off and I was able to use the VC wheel, no problem.

The controls are a little different on HAs these days -- more likely to be buttons and/or toggle type switches. Instead of an on/off switch most HAs have you push out the battery case when the HA is not in use. I think your son could manage it.

But give him a little bit of time. I have a total of 4 programs on mine and I'm suppose to be able to tell which one I'm using by listening to the beeps! Crazy huh, cuz I don't hear well. Duh. Well after about 2,3 hours of practicing I got it. Think they call it auditory training.


ETA: Of course, until I could hear the difference between the beeps, I knew what program I was in by counting the number of times I pressed the button.

 

[Jazzberry]

Analogue hearing aids defo got MUCH better VC and more control to the user than digital aids. When I tried out my digital aids when I was in my mid teens it was useless! It made no difference, I cannot tell if it was quieter or louder. I wanted FULL control of VC like Analogue. Course that isn't possible with digitals for some reason. That wasn't only problem, too many problems comes with digital aids for me.

I think that the old fasioned VC wheel had more range than most current HAs VC push button which adds or takes away a set amount of decibels. I don't know how much of that is under the control of the audiologist -- it depends upon the manufacturer and how they designed the HA and how they designed the software that allows the audiologist to manipulate the HAs settings.

I'll also say that I've been to quite a few audiologists over the past 47 years. (I'm 52.)

I believe it's not just about academics. Its also about creativity, imagination, empathy and talent. Most audiologists don't have hearing loss and they have to imagine what their clients are experiencing. I think its amazing when a hearing aid adjustment works and not surprising, but of course unfortunate, when it doesn't.

I've read articles that said that most people are not satisfied with their hearing aids. Many hearing aids are not worn but end up taking up space in a dresser drawer. I believe there is room for improvement in how HAs are fitted, but I don't have the answer.

It reminds me of an article I read years ago. A newspaper reporter went to six (? about that many) different accounting firms and gave them all the same information and the same numbers. He got back six completely different tax returns.

I would not be surprised to find out that if a newspaper reporter with a moderate or severe loss went to six different audiologists, that he would come back with six different fittings. I'd like to see a newspaper do this undercover story!

Also, FWIW, I still remember my switch over from analogue to hybrid analogue to digital HAs. I still remember the relief I felt when I switched over to the digital HAs. Before then, when wearing analogue hearing aids, my scalp and neck muscles were always tense. Sound made me tense.

I was able to stay relaxed with my first pair of digital HAs even after I put them on. I told my audiologist this. She had not wanted to fit me with digital HAs because my loss was so severe that she didn't think I could make the adjustment. However, I had tried them at a convention, so I knew I would like them and I pressed her to prescribe me a pair. When I told her how my neck and scalp muscles were no longer tense, she told me that she was sorry and apologized to me. (She had been my audiologist for several years and had sold me some of those analogue HAs).

The state of the technology was not her fault! But I was glad that my story made an impression on her, as a result she probably didn't delay that long selling other people with severe losses digital aids.

Hearing loss is complicated and I believe it is very difficult to effectively fit each loss with a pair of HAs.

My hope is that more and more will be learned and understood and that fitting HAs will become more of a science and less of an art. If we can get to that point, then I believe that in the future more HAs will be worn and less abandoned in dresser drawers.

 

[Buffalo]

What year was this? I was only given one body type HA to wear in 1953.

In early 60's. I had to have two body type hearing aids as my ears needed to hear at different volumes. My mother would take extra cloth from the hem of my dresses and sew pockets on chest for them. I looked like a mature drawf.

 

[rebeccalj]

DS is almost 6, hoh, and has just started Kindergarten.

It seems like every year we go through this: he refuses to wear his hearing aids. And now, he refuses to even consider putting the boots on to try the new FM system.

Right now, he will consent to wear the left HA all day. He might wear the right one for part of the day, but by the time school is over, it's out.

When he has an ear infection, he of course doesn't have to wear both. When it's really humid and he says his ear itches, he doesn't have to wear both.

We are extremely lenient about not wearing them in the evening on weekends at home.

But his favorite thing right now is to say he won't wear them, or one, is that "they're beeping so I can't wear them." Even when we know a fresh battery is in and shouldn't beep.

So, for kicks, I hung them outside my ears one afternoon for a few minutes & never heard this "beeping." I told him this the next time he offered that as his reason, and he looked sheepish like I'd caught him out.

He tests everyone and everything. It's in his nature as well as being a child. And, this is one thing in his life over which he can exert control. I know he respects his TOD, but he only sees her once a week. I wonder if some of this is trying to have control over his new K teacher.

We've never used punishment if he didn't wear the HAs, but I have been known to bribe him to keep them in all day.

I just don't know what to do at this point.

Part of me thinks, "Well, we're the adults. We say he has to wear them." But, it's not like we can staple them to his head. Just kidding, for sure!

Part of me thinks, "Well, he's the one who has to wear them. If he doesn't want to, so what."

We have an appointment with the ENT and the audi today to make sure all is healthy w/ ears and HAs are functioning. We will also talk again about sound levels and recruitment.

Advice, stories, hints, kicks in the pants?

Uhm, maybe he's more comfortable being deaf than you are that he is not hearing?

 

[rebeccalj]

I hope you don't think we are forcing him through pain. If anything, we are very lax, I hope. I don't want to be one of "those" parents.

Ok, I will admit, one time I physically restrained his hands so he couldn't pull them out at the audi's for one test. He has been very uncooperative about testing and we just needed this one last one for the school district. I'm ashamed of it.

He has a mixed loss.

He sometimes hears "well" without them. In some situations, a person might not know he is HOH. In many other situations, it is more evident that he is not Hearing.

I think I posted his audiogram on another thread; I don't have it at hand. As of late Spring 2011, when we finally got the range of tests done in one fell swoop, there was no decrease in hearing. Possibly a slight increase due to new tubes having been put in.

He has less loss on the right; this is the side he doesn't like to wear. However, if he's not wearing the left one due to an infection, he will wear the right one.

And eventually, if we wait him out long enough--over weeks--he will usually agree to wear both for the school day.

I don't want to be defensive and don't mean to be. I don't post much, so you don't have much background. I will try to fill in if necessary. I don't always know the right terminology, either, so I will try to learn that, too.

If he only wants to wear one, I'm ok with that. We can change the IEP if the school has a problem with it being his choice.

I wish he would try the FM to see if it helps him hear his teacher. Last year in preschool, one of his classmates had more of a broadcast FM system, but my son has the direct teacher to boot kind. We won't know if he can benefit from it unless he'll wear a boot.

His first language was ASL. He speaks English now. But, from other things I'm noticing, we need to revisit the use of ASL.

To the first bolded *sigh*. Maybe I'm a little impatient lately but, for crying out loud, deaf children COMPENSATE!!! They do not suddenly *hear better* one day over the other. They are learning from visual cues!!!!! What you *think* is a good hearing day is just your child picking up on the visual and body language necessary to communicate.

The final bolded *sigh*. His first language *WAS* ASL? Why is it no longer? I'm pretty sensitive about this so forgive me if I seem overly blunt. It bothers me that you say that and then say, "He speaks 'English' now like this is some kind of victory. Sad. There are thread after thread after thread of grown 'little deafies' who share our experiences with the hearing world and, still, nobody seems to listen save for a select few.

I pity your child. You obviously love him but you don't accept him.

 

[rivenoak]

EEEEEKkkk.....that's a RED FLAG. Have they ever taught a dhh kid before? Oh boy.....that's another flaw in mainstreaming. It assumes that the teachers are familiar with how to teach kids with classic disabilties.

Apparently there is only one other d/hh kiddo at the school right now and they've had a few others over the years, but I don't know how many.

And this is all complicated by the fact that 2 elementaries closed over the summer and this school has "new" staff who came from the other schools. So who knows whether or not they have had experience with d/hh or not at the previous school.

Also complicated by no one at the school officially knew he was coming until two days before school started, so his records couldn't be transferred ahead of time, etc. Why this is is a long and boring story which I will spare you; I will say that I tried to register him ahead of time, but it wasn't possible.

 

[rivenoak]

FWIW, I’m inclined to trust your son. If he says that his HA is uncomfortable, I believe him! He’s 6 years old -- most 6 year olds just want to be play with the other kids in their class, right? If the HAs were helping him do that without discomfort, I’ve no doubt he would wear them without protest.

Yes, I tend to trust him as well. He's not a complainer by nature, doesn't cry or fuss when he trips or falls off something. If he says it hurts, it hurts. I'm trying to understand why & remedy it.

As it turns out, he didn't want to go to Speech because it was during recess. Due to the heat, the kids got to stay in and watch "Word World." No 6 year old wants to leave his friends who are having fun time after lunch, especially when they're watching a video. I am very frustrated to learn that, so the school and I will have to talk about what is an appropriate time of the day to do a pull-out.

 

[rivenoak]

The controls are a little different on HAs these days -- more likely to be buttons and/or toggle type switches. Instead of an on/off switch most HAs have you push out the battery case when the HA is not in use. I think your son could manage it.

There is a small button on the back of each HA that I will assume is for VC, as they are turned off/on with the battery case.

In fact, he and I were practicing with the case the other day. For a long time, he had locks on the cases so that he couldn't get at the batteries. Now, one HA doesn't have a lock and the other one's broken, so he can now turn them off when he wants or help change batteries.

 

[jillio]

Yes, I tend to trust him as well. He's not a complainer by nature, doesn't cry or fuss when he trips or falls off something. If he says it hurts, it hurts. I'm trying to understand why & remedy it.

As it turns out, he didn't want to go to Speech because it was during recess. Due to the heat, the kids got to stay in and watch "Word World." No 6 year old wants to leave his friends who are having fun time after lunch, especially when they're watching a video. I am very frustrated to learn that, so the school and I will have to talk about what is an appropriate time of the day to do a pull-out.

No matter what time of day they do it, it is never good for the child. And it gets worse as he gets older.

 

[DeafCaroline]

Yes, I tend to trust him as well. He's not a complainer by nature, doesn't cry or fuss when he trips or falls off something. If he says it hurts, it hurts. I'm trying to understand why & remedy it.

As it turns out, he didn't want to go to Speech because it was during recess. Due to the heat, the kids got to stay in and watch "Word World." No 6 year old wants to leave his friends who are having fun time after lunch, especially when they're watching a video. I am very frustrated to learn that, so the school and I will have to talk about what is an appropriate time of the day to do a pull-out.

That's the worst...having to stay indoors to do speech therapy while other kids ran out to play.

 

[rivenoak]

To the first bolded *sigh*. Maybe I'm a little impatient lately but, for crying out loud, deaf children COMPENSATE!!! They do not suddenly *hear better* one day over the other. They are learning from visual cues!!!!! What you *think* is a good hearing day is just your child picking up on the visual and body language necessary to communicate.

The final bolded *sigh*. His first language *WAS* ASL? Why is it no longer? I'm pretty sensitive about this so forgive me if I seem overly blunt. It bothers me that you say that and then say, "He speaks 'English' now like this is some kind of victory. Sad. There are thread after thread after thread of grown 'little deafies' who share our experiences with the hearing world and, still, nobody seems to listen save for a select few.

I pity your child. You obviously love him but you don't accept him.

Thank you for sharing your thoughts and concerns.

I could have chosen my words differently. I probably still won't choose them correctly now.

He speaks English now (as opposed to German which both DH & I know and could have taught him, but we don't speak it on any kind of a regular basis) because as he grew older that seemed to be his preference. I don't see it as a victory.

Sometimes, I think it would be "easier" to make some of these decisions if he had no residual hearing or if speech hadn't come easily for him. I feel caught between a couple of worlds, who have differering on opinions on what's right for this HOH child. And oddly enough, the pro-ASL stance here isn't what I've experienced in my small real world interactions with d/hh.

It is very confusing for this hearing parent to sort it all out. I'm trying. And I hope that one day when my son looks back, he will see that for the mistakes I made, I didn't make them out of malice and always tried to learn and go forward, and that he will forgive me.

 

[rivenoak]

That's the worst...having to stay indoors to do speech therapy while other kids ran out to play.

I was trying to remember what I was pulled out of when I did speech therapy. I can't remember and I suspect my mother won't.

I do remember that I was pulled out of reading to study French for a while and while I liked doing something less boring, I didn't like being the "weirdo" who had to leave the classroom.

 

[rivenoak]

Uhm, maybe he's more comfortable being deaf than you are that he is not hearing?

He might be. It's not a topic we've managed to sort out. I'm not sure how to approach it with him and not have him give me the answers he thinks I want.

Any suggestions are welcome.

 

[rivenoak]

No matter what time of day they do it, it is never good for the child. And it gets worse as he gets older.

At what point does a parent say, that's it, his articulation is as good as it's going to get & that's fine, no more therapy? Or how can one know that that point is approaching?

As he grows older, of course his opinion will be heard and considered. But, right now, as parents, is it not up to us to say, "we think this is of benefit to you"?

At this point, is 15 minutes a week (I *think* that's what it is) too much to ask? I don't know. Seems reasonable, but maybe it isn't.

For me, I had a sybillant (sp?) /s/. I went to therapy for a short time, it was corrected, and that was it. Since then, I no longer have a sybillant /s/. That's my only personal experience with it.